I am not responding well to most treatments. I'm very surprised. I respond to Tetracycline, but only moderately to low for Doxycycline (And the results disappeared after only a few weeks), and I showed no improvement with Minocycline.
No results with Biaxen, Plaquenil, Zithromax, and Plaquenil as well as switching to Zith with Amantadine. Bicillin shots didn't work, Factive didn't work, the Cowden didn't work (Infused Condensed), and Bactrim gave me a bad rash, Rifampin raised Liver Enzymes too high, IV Vanco caused allergic reaction. Oral Omniceft didn't work. Detox didn't work, using Nebulized Glutathione, ALA, NAC, Chlorella, Chelation (Chelex), Adrenal treatment didn't work. Infared Sauna, Diflucan didn't work, although I tested positive for Mold, so we're trying a very heavy antifungal called VFEND next. Maybe that will help. Dr. Zhang's treatment didn't work, but I did notice strong Herxheimer reactions with Coptis, but not Allicin or other treatments. Valtrex didn't work.
Bactrim would have worked well had I not had to stop it. I felt "strong strong" reactions to it, and saw improvement quickly.
I just can't get over the 35-50% plataeu. That's the best I've felt. Treatment has worked over long periods but it's been 7 years just to get where I am. I can exercise on my bike, which improves symptoms temporarily (But not about 40%)and it only lasts a few hours. I've used Nystatin as well.
Levaquin was used in the past during a massive improvement period, but I was also on Bactrim and had just come of IV Vanco about 1 month earlier -- so Levaquin may have been responsible, but I'd have to try it again.
My doctor wants to go back to the IV and try Rochepin and IV Doxycycline. I'm ambivalent and don't think it'll work. It might, but..... you know, ...I'm discouraged.
Another treatment that has worked, but didn't actually improve function was Malarone. Night sweats have drastically decreased. Most nights now I only change once or maybe twice. It was about 5-10 before. Shortness of breath improved too. Neither symptom was painful or causing loss of function.
I bought a Rife Machine, but will not use it until I've exhausted all of the doctors (and my) oral or IV therapies. I have no metal fillings, but I did test strongly positive for Lyme, clinically I'm diagnosed with Bartonella of the tick variety, Babesia, Mycoplasma P, Clymidia P, EBV, Rocky Mountain Spotted Fever tested positive on Quest. I had high Mercury initially and moderate Lead levels -- both of which (as I said) were treated long term with Chelation.
Host Defense didn't help. Magenesium levels were normal, supplementing didn't help. B12 levels were normal, but supplementation with B12 injections (from Fallon Compounding) didn't help. Thyrod testing was positive across all spectrums, Free T, T3, T4 blah blah, supplementing with Armor Thyroid didn't help. Correcting Estrogen balance didn't work, nor did high does Probiotics with VSL#3, Theralac, and Saccromycines (sp?) Artemesie didn't work at the highest dose (6 capsules per day). Mepron didn't work (highest dose, 2 tsp x 2) Vitamin D was very low, supplementing with D2 and D3 didn't help. Fish Oil made me feel sicker. Multivitamins of the highest quality didn't work.
Assuming Autoimmune issues as a possibility? Prednisone didn't work, Remicaid didn't work, Imuran caused allergy, Methotrexate didn't work. (These were all given before diagnosis, unfortunately). Prednisone releived symptoms temporarily, so we know inflammation and the immune dysregulation are probably part of the problem). Transfer Factor Plus worked extremely well for about 1 week and didn't work again. I used 9 capsules when I did it.
Wellbutrin alleviates some cognitive symptoms to a "minimal" degree. Lamictal balances mood "minimally" Ativan permits sleep to a minimal, sometimes moderate degree.
Aspirin does alleviate stabbing and dull aches and pains sometimes. Heavier pain killers worked early in the illness to some degree in high doses, like Demoral and Morphine.
Most sleep medications didn't work. I've tried about 100 different medications over 25 years, and only about 5 improved function in minimal or moderate ways.
Tetracycline and Malarone are the only two that appear to be actually hitting an infection and are actually helping maintain 35-50% function.
So what am I missing? I may have done more but can't remember. If you mention something I've tried, I'll say so. Otherwise, I'm all ears. Ideas?
I've had the infection as far back as age 9. I'm 31 now. My parents believe I was "possibly" infected at around 18 months old, as an infant. They said I went from a gentle baby to suddenly psychotic and aggressive -- attacking pets and furniture, (Biting it and clawing...)
Most of my symptoms are CNS and cognitive/psychiatirc, as well as digestive. I did have all the other typical aches, joints, etc, but they weren't as crippling. Fatigue is also prominent.
Cliff Notes: I've seen 150 + doctors over 20 years, and tried over 100 + drugs, including most convention and alternative treatments given for Lyme and associated infections. We know 99% that I have Lyme, 100% that I had RMSF, Mold, abnormal cortisol, abnormal Brain SPECT, EBV, CPN, Myco P, Mercury/Lead. Only Tetracycline and Malarone helped get me to 35% on average, with some periods of 40% and occasional spikes to 45% and one or two spikes at 50%(a few days at most) (Over 7 years).
Posted by glm1111 (Member # 16556) on :
Hey MB,
I know I have given you this info before, but since you are not making progress with your current tx, I thought I would give it another shot. Have you considered the info on
???? If you have this co-infection, (filarial worms) you may want to consider using some antiparasitics. Also there is a lot of good info on curezone about parasites and Lyme.
Gael
Posted by dmc (Member # 5102) on :
Why not look into trying Tigecyl? I feel that made the most difference. Only did 4 months, had to stop due to blood clot
Posted by METALLlC BLUE (Member # 6628) on :
DMC, the IV Tigecycline? Yeah, I've been considering it as a possibility. Gael, yeah I still have to look into that. It's on my list. Thanks for the reminder.
Posted by ukcarry (Member # 18147) on :
Metallic Blue, you should be congratulated on your persistence.
I've been ill a long time too, though only diagnosed in 2007, so have tried far fewer medications.
I've not seen real improvement either as of yet, but I am trying AI therapy. I can't yet give a full, positive recommendation, but I wonder if it would be worth your while looking into.
Hope you can find something positive to reach a better level,
Carry
Posted by JamesNYC (Member # 15793) on :
God MB, I'm sorry to hear all this.
What were your dx criteria? Aside from clinical, what else did you test positive for besides RMSF?
James
Posted by Marcie (Member # 10070) on :
What dose are you on of Malarone? Maybe you need to up your does or possibly switch to a different babesia treatment like mepron or quinnie/clindamyacin? If malarone is helping or maintaining you must have babs.
Hope you find your answer soon.
Posted by D Bergy (Member # 9984) on :
I guess I am confused as to why you have not used the Rife machine. Although I am not as experienced with using it for Babesia as Lyme, it seems to knock Babesia back easily. Like a few treatments and symptoms are gone. It will come back, but it takes a longer time.
There is no conversion issue with any of the co-infections, so you can use it anytime without any problem with any other medications for co-infections.
You can also try 2 Hz to attempt to relieve swelling in the joints. I have not determined how effective this is, as my wife's reactions are inconsistent, but there is reason to believe it works to some degree.
Just start slow.
Dan
Posted by Sparrow (Member # 11734) on :
I am sorry you have had problems progressing in your treatment. My 20 something daughter has similar problems so I can relate.
Before my daughter was diagnosed, I read a book about a rheumatologist named Dr Brown (I think) who isolated myco in rheumatoid arthritis patients and treated them with IV tetracycline. I thought my daughter had juvenile rheumatoid arthritis at the time and I convinced someone to give her IV tetracycline mixed with a meyers cocktail. She had an IV every week for 5 weeks and felt great. I wanted to continue, but this was all under the radar and the person who helped me with this wanted to work on immune boosting.
Naturally, she crashed and we went on to more doctors and finally got a positive lyme diagnosis several years later and babs still later. She eventually did IV rocephin and doxy and neither worked as well as the IV tetracycline. I have never been able to get a doctor since then to even try tetracycline.
Long story short, since you seem to respond to tetra and you had a positive myco, maybe IV tetrcycline would work. Hopefully you can find a doctor who will prescribe it if you want it.
Also, you did not mention any homeopathic treatments. My daughter tried the Deseret Biologicals Bart Series and was very much improved for several months with that. She has crashed, but it was more effective than most of the antibiotics we have tried and lasted longer. We are still trying to explore homeopathics for her.
I wish you luck on your quest for treatment and hope you can reach a 100%.
Posted by Myco (Member # 9536) on :
I agree with Sparrow that IV Tetra or Doxy might be a good idea. How long did you give the Minocin? I find that many patients respond to Mino or Doxy with Zithromax MWF and then added Flagyl Pulses, but this is a long treatment and you must stick with it through the good and the bad. The herxing can last a long time and you must take binders. Switching protocols too often may be a bad idea.
Posted by massman (Member # 18116) on :
How is your liver still alive ? And kidneys as they are a liver backup ?
Parasites can very much be a concern that interferes with progress.
What is your diet ? You may want to check out the Paleo Diet thread here. Drugs may kill but they do not and cannot chande your internal terrain.
Posted by METALLlC BLUE (Member # 6628) on :
quote: Metallic Blue, you should be congratulated on your persistence.
I've been ill a long time too, though only diagnosed in 2007, so have tried far fewer medications.
I've not seen real improvement either as of yet, but I am trying AI therapy. I can't yet give a full, positive recommendation, but I wonder if it would be worth your while looking into.
Hope you can find something positive to reach a better level,
It's a possibility I've considered. It's on the list. I'm trying to do therapies based on the science available. As the scientific evidence ran thinner and thinner I relied more heavily on patient reports, but those are gradually running thin, so I needed new ideas. Thanks for mentioning the AI again.
quote: What were your dx criteria? Aside from clinical, what else did you test positive for besides RMSF?
Labcorp, BayState Reference, and Quest identified various bands for Lyme Disease, but none was specific. Both Labcorp and Baystate found band 41 on IGG. Quest found 41 and 45 on IGG. Igenex found nearly all the specific bands and most non-specific bands for IGM, as well as four bands on the IGG, but one of them was IND -- but it was assumed positive given the combination of other bands.
EBV tested positive with Quest, but only IGG, thus Valtrex. RMSF was positive but only on the IGG. Tetracycline had been given from 2002 onward through 2008, with a total of about 4 years of total treatment. Minocycline was given in 2009 for a total of 4 months, and Doxycline was given a total of 2 months following Minocycline. It was assumed by my physician that after this much treatment, it would have killed the RMSF combined with all the other antibiotics too, but especially the cyclines. Here is the actual listing:
Heavy Metals: Lead and Mercury Doctor's Data Urine Toxic Metal: Lead & Mercury Elevated.
Chlamydia Pneumoniae Quest Diagnostics CPN IGG 1:128 H <1:64
Mycoplasma Pneumoniae Quest Diagnostics AB IGG, EIA 1.84H <=0.90 ISR
Hypercortisolism Aeron Life Cycles Elevated Morning: 8 a.m. 10.5 max range 6.0ng/ml 12 p.m. 3.63ng.ml max range 2.5ng/ml. Test repeated later, Hypercortisolism in the morning and at night.
Stachybotrys Chartarum IBT Reference Lab Stachybortrys Panel II IGA 6.9 <01.0mg/L Repeated IGA 4.8
Abnormal Bowel Flora Genova Diagnostic NG No Growth Escherichia coli, PP +2 Candida Albicans
Babesia None Clinical Diagnosis
Bartonella None Clinical Diagnosis
CD57 through Labcorp found 85, anything above 60 is considered reasonable but far from well in Chronic Lyme Disease. It suggests that relapse will take place or that the patient has co-infections -- if after extensive treatment.
Fry Labs blood smear found something which has yet to be agreed upon. He says it's a parasite of some form.
Testing through MDL, showed no positive tests for a variety of tick born infections, both PCR, and Western Blots. Igenex testing was negative for everything but Lyme -- All co-infection panels were run, except they don't test for RMSF.
Here was the symptom pattern as well:
CT scans, Xrays, testing of all infectious diseases known to cause this pattern, as well as as internal digestive investigation, and comprehensive metabolic functions across the board were conducted. Over the years, Psychiatric evaluations, MRI's were performed. Evaluations for cognitive function found deficits across the board in visual spatial, memory, short term especially, temperol lobe deficits were severe as well as frontal lobe function was diminished by 50-70% on Brain SPECT scanning.
- Unexplained flu symptoms: fevers, sweats, chills * * 1987 - Swollen glands * * 1987 - Difficulty with concentration or reading * 1987 - Forgetfulness, poor short term memory * 1987 - Joint pain or swelling * * 1987 - Muscle pain or cramps * 1987 - Memory impairment or loss "brain fog " * 1987 - Dyslexia and word-finding problems * 1987 - Attention deficit/hyperactivity disorder * 1987 - Anxiety * 1988 - Nightmares * * 1988 - Ear Infections * * 1988 - Sore throat & Nose Bleeding* * 1988 - Fatigue, tiredness, debilitating * 1988 - Confusion, difficulty in thinking * 1988 - Visual/spatial processing impairment trouble finding things, getting lost, bumping into things * 1988 - Slowed processing of information * 1989 - Sleep Disorders, insomnia, waking up constantly. * 1990 - Violent behavior, irritability * 1990 - Rage attacks/impulse dyscontrol * * 1990 - Lightheadedness, wooziness, difficulty walking straight * 1990 - Tremor * 1991 - Depression * 1991 - Antisocial behavior * 1992 - Exaggerated symptoms & hangover from alcohol * 1992 - Twitching of the face or other muscles * 1992 - Headaches * * 1992 - Blackouts/Fainting * * 1992 - Tingling, numbness, burning, stabbing sensations * 1992 - Heart murmur or Palpitations, pulse skips, * * 1992 - Stiffness and cracking of the joints, neck, or back * 1992 - Eyes: double, loss, blurry, pain, increased floaters * 1992 - Ears/hearing: buzzing, ringing, ear pain * 1992 - Dizziness, poor balance. * 1992 - Sexual dysfunction or loss of libido * * 1993 - Unexplained weight change loss * 1993 - Shortness of breath, cough, * * 1993 - Change in bowel function constipation, diarrhea * * 1994 - Obsessive compulsive disorder OCD * 1995 - Abdominal Pain, Acid Reflux, Nausea * 1995 - Rapid mood swings that mimicked bipolarity * 1996 - Disorientation: Walking into rooms & not knowing why. * 1996 - Excessively itchy skin * * 1996 - Hands and/or bottom of feet ache * 1996 - Blood sugar changes * * 1996 - Photophobia Light sensitivity * 1996 - Phonophobia Sound Sensitivity * 1996 - Upset acidic stomach and nausea increased * 1996 - Chest pain Heart/Left of * 1996 - Rib Pain Left side, around top of Liver * 1997 - Unexplained hair loss while brushing or showering * 1998 - Cold hands/feet, Clammy * 1998 - Night sweats Bed, Pillow, and changing cloths often * 1999 - Transient muscle pain which jumps around the body * 1999 - Extreme weight loss 80lbs in 4 months * * 2000 - Sleep Paralysis * * 2000 - Testicular pain * * 2000 - Crohn's Disease * 2000 - Irritable bladder or bladder dysfunction * * 2000 - Panic attacks * * 2000 - Facial paralysis, drooping eye lids -- Bell's palsy * * 2008 - Trouble beginning Urination at night. *
quote: What dose are you on of Malarone? Maybe you need to up your does or possibly switch to a different babesia treatment like mepron or quinnie/clindamyacin? If malarone is helping or maintaining you must have babs.
Hope you find your answer soon.
Mepron was given for 4 months, 2tsp twice per day. A potential idea you mentioned is on my list Quinnie/Clindamycin. It is presumed to be Babesia, though other parasites around the world are known to respond to this drug. With other co-infections confirmed, we can safely assume the clinical diagnosis of Babesia is likely.
quote: I guess I am confused as to why you have not used the Rife machine. Although I am not as experienced with using it for Babesia as Lyme, it seems to knock Babesia back easily. Like a few treatments and symptoms are gone. It will come back, but it takes a longer time.
There is no conversion issue with any of the co-infections, so you can use it anytime without any problem with any other medications for co-infections.
You can also try 2 Hz to attempt to relieve swelling in the joints. I have not determined how effective this is, as my wife's reactions are inconsistent, but there is reason to believe it works to some degree.
Just start slow.
Joint swelling isn't a problem, but thanks for the suggestion. Treatment with antibiotic therapy isn't compatible with Rife therapy based on patient reports. If this is true, it should make sense now why I haven't used the Rife Machine yet. Rife is a big commitment without any clear science supporting it, so while it's on my list, I've got to exhaust other pharmaceutical options with more evidence before I make that commitment. Any further advice, or should I wait if I'm continuing to attempt drug therapies aimed at Lyme Disease.
quote: I am sorry you have had problems progressing in your treatment. My 20 something daughter has similar problems so I can relate.
Before my daughter was diagnosed, I read a book about a rheumatologist named Dr Brown -- I think-- who isolated myco in rheumatoid arthritis patients and treated them with IV tetracycline. I thought my daughter had juvenile rheumatoid arthritis at the time and I convinced someone to give her IV tetracycline mixed with a meyers cocktail. She had an IV every week for 5 weeks and felt great. I wanted to continue, but this was all under the radar and the person who helped me with this wanted to work on immune boosting.
Naturally, she crashed and we went on to more doctors and finally got a positive lyme diagnosis several years later and babs still later. She eventually did IV rocephin and doxy and neither worked as well as the IV tetracycline. I have never been able to get a doctor since then to even try tetracycline.
Long story short, since you seem to respond to tetra and you had a positive myco, maybe IV tetrcycline would work. Hopefully you can find a doctor who will prescribe it if you want it.
Also, you did not mention any homeopathic treatments. My daughter tried the Deseret Biologicals Bart Series and was very much improved for several months with that. She has crashed, but it was more effective than most of the antibiotics we have tried and lasted longer. We are still trying to explore homeopathics for her.
I wish you luck on your quest for treatment and hope you can reach a 100%.
IV Tetracycline exists? I knew about IV Doxy and IM Minocycline --which isn't commonly used-- as well as IV Tigecycline, but I never heard of IV Tetra. What is the Meyers cocktail?
I've used the full Pekana Homeopatic protocol and saw no results. I tried Naltrexone but reacted harshly with intense side effects at only 2mg, thus it was stopped. The Desert Biologicals was on my list too, and I'm glad to hear you had some results with it. It very well could help me.
I can get just about any medication prescribed that I ask for. My primary has been super kind to me. I worked hard for her trust though and keep her updated by e-mail every week or two. She pretty much prescribes whatever my specialist requests so that I can get full coverage in Massachusetts. My LLMD is not in my state thus his prescriptions are not covered sometimes.
quote: I agree with Sparrow that IV Tetra or Doxy might be a good idea. How long did you give the Minocin? I find that many patients respond to Mino or Doxy with Zithromax MWF and then added Flagyl Pulses, but this is a long treatment and you must stick with it through the good and the bad. The herxing can last a long time and you must take binders. Switching protocols too often may be a bad idea.
I had used Cipro and Flagyl in the past and saw no results. The Dorxy -- Extended release-- Doxycycline was 2 months and Minocycline was done for 4 months. I think I said 2 in my original post, but I looked it up again
Zithromax was combined with the Minocycline, Mepron and showed no results. I experienced no herxheimer reactions on almost all the therapies. Bicillin caused some mild Herxheimer reactions, and so did Dorxy and Tetracycline. Tetracycline causes clock-work reactions. In other words I can time to the hour practically of how long the drug must be taken until the Herxheimer reaction begins and ends, and when the improvements happen. It's exactly 9 days of using the drug when the Herxheimer begins, and the 12th day when it ends. By the evening of the 12th day or 13th morning the results come and I begin feeling about 5-10% better, which is alot when you're only at 35%. I go from homebound to actually being able to leave the house. I'm still disabled of course but I'm "better". If I could hit 50% and stay there, I could actually live a life while disabled -- relationships, even light schooling or employment.
So that is whee I am.
Posted by METALLlC BLUE (Member # 6628) on :
quote: How is your liver still alive ? And kidneys as they are a liver backup ?
Parasites can very much be a concern that interferes with progress.
What is your diet ? You may want to check out the Paleo Diet thread here. Drugs may kill but they do not and cannot chande your internal terrain.
All panels are normal for organ function. Everything is working well -- luckily.
Parasites are quite a possibility, but I'll have to explore that further with the doctor.
My diet hasn't influenced anything except a few digestive symptoms. Sometimes grains upset me, and other times not at all. I depends if the Lyme improves. With Tetracycline, they decrease. I've changed it extensively over the years, including vegetarian, meat, etc -- no grains, with grains, you name it. Dietary change doesn't seem to impact the overall picture. I was tested for Sprue and Celiac too.
I was diagnosed with Crohn's Disease, but am on Pentasa to control symptoms. The disease has pretty much gone from crippling to almost entirely absent as the years passed on Tetracycline. When I flare up real badly -- for whatever reason -- I feel some "Crohn's-like" discomfort, but no loose stools etc, just a slight tightness by the terminal ileum (slightly above Appendix)
Posted by METALLlC BLUE (Member # 6628) on :
Here is a list of About 1/2 of the medications I had used and the results. These were the most important ones.
Medications: And there Outcome
Ritalin SR 20mg No Response Lithium No Response Prozac No Response Disiprimine No Response Eskalith 400mg x 2 No Response Norpromine 100mg po t.i.d No Response Imuran Poor Response Allergic Cefotan Fair Response Percocet Fair Response Proctofoam Poor Response Nitroglycerin Poor Response Lorazepam 1mg x 1, then 2mg x 1 Great Response Protonix 40mg x 1 Great Response Nexium 40mg x 1 Great Response Sulindac 150mg x 1 No Response Roxicet 5/325 Fair Response Trovan Great Response Metronizdazol 250mg No Response Zithromax 250mg and 500mg x 1 No Response Prednisone 10mg, raised to 80mg slowly (Good initially) Poor Response: Devastating Azathioprine No Response Cipro 250mg No Response Prilosec Great Response Asacol 3,600mg per day No Response Tuberculine S No Response Methotrexate No Response Paxil 20mg (Induced Panic Attacks) Poor Response Remicade 3 infusions 300mg No Response Morphine 15mg Good Response Zoloft 50mg (induced Panic Attacks) Poor Response Demerol Great Response Pentasa 1,000mg x 4 Good Response Reglan 5mg po a.c. Great Response Tylenol 650mg Fair Response Aspirin 625mg Fair Response Droperidol Poor Response Prevacid 30mg No Response Ambien 10mg Poor Response Amitripyine 25mg x 1 No Response Compazine 10mg every 8hr Great Response Tetracycline 750mg x 2 then 1,000mg x 2 Good Response - Relapsed Biaxen Clarithromycin 500mg x 2 No Response Plaquenil 200mg x 2 No Response Tramadol 50mg as needed Good Response Oxycondone 5mg through 325mg every 4hr, Great Response Lidocaine 2% gel Great Response Phenergran 12.5mg po 4-6hr as needed. Great Response Penicillin VK 1000mg x 2 Good Response - Relapsed IV Vancomycin 1gram through 1.250gram Good Response - Relapsed Lamictal 100-300mg Good Response Bupropion 100mg -300mg Fair Response Sonata 10mg Poor Response Trazadone 50mg Poor Response Lunesta 2mg Poor Response Hydroxzine HCL 25mg Great Response Ranitidine 150mg x 1 No Response IV Levaquin - 1.250mg Great Response - Relapsed Zantac 150mg x 2 No Response Sulfameth Trimethoprim Bactrim 800/160 x 2 Great Response - Relapsed Darvacet (Induced Panic Attacks) Poor Response Hydrocortison Cream 2.5 Propoxyphene 100WAPAP650 every 4h. Good Response Diazepam (Valium) 5mg (Panic, Dizzyness) Poor Response Rifampin 300mg x 2 (Caused Severe Insomnia) Poor Response Minocycline 100mg x 1 (Caused Dizzyness & Anxiety/Panic) Poor Response
Antibiotics Duration & Support: Outcome
26 Weeks Arithromycin Zithromax 500mg x 1 No Response 24 Months Plaquenil 200mg x 2 No Response 48 Months Tetracycline 750mg x 2 Good Response - Relapsed 4 1/2 Weeks IV Vancomycin & Oral Penicillin Good Response - Relapsed (Allergic To Vancomycin at 2 weeks in) 24 Months Clarithromycin Biaxen No Response 2 1/2 Weeks Sulfameth Trimethoprim Bactrim Great Response - Relapsed 9 days Sulfameth Trimethoprim (Bactrim) (Redish sunburn appeared) Strong Herxheimer Reaction- Relapsed 4 days Levaquin IV Great Response - Relapsed 2 1/2 Weeks Oral Levaquin Great Response - Relapsed 1 Day Rifampin 300mg x 2 (Caused severe insomnia) Poor Response 4 Months Minocycline 100mg x 2 No Response 10 days Diflucan 200mg No Response 18 Weeks Mepron 2 tsp x 2 Weak Response 12 Weeks Bicillin Injections 2.4mu mf (originally mwf & 1.2mu) Weak Response
Herbal/Alternative Outcome
8 Weeks 4 Life Transfer Factor Plus 3 x 3 Great Response - Relapsed 30 Days Nutrimedix Samento 20-25 Drops x 1 Strong Herxheimer Reaction - Unknown 14 Days Nutrimedix Burbur 10-20 Drops x 2 Fair Response - Relapsed 2 Days Nutrimedix Banderol 5 Drops x 1 Good Herxheimer Reaction - Relapsed 10 Days Nebulized Glutathione 2-3 ml x 1 Strong Detoxification Reaction - Relapsed 60 Days Dr. Zhang Artemesia 1 x 2 Fair Response - Relapsed 60 Days Months Dr. Zhang Coptis 2 x 3 Strong Herxheimer Reaction - Unknown 109 Days Dr. Zhang HH 1 x 3 Strong Herxheimer Reaction - Unknown 73 Days Nutribiotics Grapefruit Seed Extract 40 drops x 1 Weak Herxheimer Reaction - Unknown 25 Days Nutrimedix Trace Minerals 15 drops x 1 No Response 49 Days Dr. Zhang Allicin 3 x 3 Weak Herxheimer Reaction - Unknown 73 Days Nature's Way ALIVE 2 tablets x 1 No Response 10 weeks Arctic Omegapure Fish Oil 1 x 3 Poor Response (Causes worsening of symptoms and doesn't improve)
I haven't updated this list in a few months, so there are other things that I mentioned earlier, such as Pekana, full Cowden etc.
Posted by METALLlC BLUE (Member # 6628) on :
I'm a perfect example of Chronic Persistent Lyme inspite of "more than adequate" antibiotics. The IDSA is run by morons. They'd just say it was refractory Lyme or false positive testing. Or, they'd say the testing lab lacked credibility.
Now remember, the positive Lyme Disease test was done in 2008. It was IGM positive and "almost" IGG positive. This was all inspite of a huge variety of antibiotics. It wasn't until 2009 though that I explored a lot of complex protocols. No changes took place, even with those.
Posted by Myco (Member # 9536) on :
Looks like you did not do combos for long periods of time to get the bugs in all the stages. For example: Doxy (daily), Zith (MWF), Flagyl or Tinidazole (pulses) adding Rifampin to the mix later.
Posted by METALLlC BLUE (Member # 6628) on :
Myco, I couldn't tolerate the Rifampin. My enzymes went through the roof. I haven't done Tinidazole in a pulse fashion but I did do Minocycline Daily 300mg x 2 with Plaquenil 200mg x 2 daily and Zithromax 500mg x 1 daily.
I did not actually pulse though. I my LLMD why we weren't doing the combinations longer and he said it wasn't necessary in my case. He said based on my response to Tetracycline I should see results within one to two months at most when a drug is working for me.
I have read the research of other physicians and know there are differing opinions on duration though, so it's quite possible that duration is an issue. I don't know though. I can bring those options to the table along with everything else you guys have mentioned. My LLMD's PA probably would be receptive to most of it I think.
[ 11-20-2009, 11:56 AM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
A patient messaged me and said they had good result when combining Clindamycin/Malarone/Artemesia. I've not done that exact combination before either. I've used long term Artemesia though and used it with Mepron.
I'll find out more from the doctor. I haven't scheduled a follow-up yet since I've been so burned out. I really didn't want to keep charging forward after having done so much treatment over this last 9 months. I'm trying the VFEND starting tomorrow. If it doesn't work then I'm going back on the oral Tetracycline so I can get some relief, and then I'll see the doctor when I feel more motivated. It will be then that I can bring all these ideas to the table.
Posted by Abxnomore (Member # 18936) on :
I know we are all different but I personally think high doses in combos for extended periods of time work best and IV along with high dose orals even better.
I don't think it's good to switch before the 8 month mark at a minimum and I think the highest dose one can take works best using all the types of meds that attack all the forms of the bacteria.
Posted by AZURE WISH (Member # 804) on :
It seems your biggest relief is from babs treatment?
Do you think maybe you did not treat it long enough at a shot?
Have you tried artemisinin?
Was you only on malarone by itself and mepron by itself?
Sorry if i missed or misread anything it is alot of text in alot of posts.
Posted by Sparrow (Member # 11734) on :
Yes, IV tetracycline exists, but IV therapy has its own problems. My daughter had great results with the 1/week tetracycline and dismal results with rocephin and doxy on a daily basis. If you want to try rocephin, you might try IM first although those shots hurt more than most--that's why my daughter switched to IV on that.
A meyer's cocktail is a mix of magnesium chloride, calcium, B vitamins and vitamin C that is given IV. It can be helpful by itself for patients. I think if someone could come up with some way to compound it to be given in a different method, it would be greatly beneficial for lyme patients!
Deseret Biologicals have several other series that might help you, so you might look at more than just the Bart Series.
Also, I think you could still run your rife machine on say a parasite program or a viral program and still do meds. I am under the impression that you shouldn't treat lyme with antibiotics and run the rife machine due to the possibility of it going into cyst form. I may be wrong about that, but that is what I thought I read.
Posted by METALLlC BLUE (Member # 6628) on :
quote: I know we are all different but I personally think high doses in combos for extended periods of time work best and IV along with high dose orals even better.
I don't think it's good to switch before the 8 month mark at a minimum and I think the highest dose one can take works best using all the types of meds that attack all the forms of the bacteria.
I agree, but when I signed on with my LLMD I agreed to his method. I'll revisit the "long term" issues and quick changing routines again to see if he has any other reasons for doing it that way.
quote: With Quote It seems your biggest relief is from babs treatment?
Do you think maybe you did not treat it long enough at a shot?
Have you tried artemisinin?
Was you only on malarone by itself and mepron by itself?
Sorry if i missed or misread anything it is alot of text in alot of posts.
Well, it's hard to say if Babesia treatment has been effective in "all" areas. Only the night sweats and shortness of breath have significantly improved, but nothing else has. Neither of those symptoms was impairing my quality of life so it didn't impact functioning.
It's possible treatment wasn't long enough for some of the drugs. My LLMD says it was, but... you know there is disagreement between specialists on that front -- even between LLMD's.
I've done long term Artemesiae with Dr. Zhang's products, but not the Artemisin -- which is the synthetic version -- purified? -- if I remember correctly.
No the Malarone and Mepron were not by themselves, but changes were made in such a way that I could tell which drug was and wasn't making changes.
For example, Mepron caused the sweats to intensify immensely once added to the routine. I was changing clothing sometimes up to 10 times per night. When Malarone was added, gradually sweats decreased to only once (and sometimes none) per night. Shortness of breath was never very severe for me. It was more of an anoyance that came and went every few days or so. With Malarone it has pretty much disappeared.
It would be awesome if the Malarone led to more serious symptoms improving, but so far it hasn't.
Tetracycline therapy has been most useful. However, Bactrim and Levaquin when mixed in 2005 to treat Sepsis made a "massive" dent in the infection causing me to go to almost 50% function occasionally, with 45% function common. That was a big big boost for me and I was only on the IV Levaquin for 3 days or so, and then given another 2 1/2 weeks orally combined with another 2 1/2 weeks or so of Bactrim. They were typical doses given for co-infections too, which was coincidental.
It's very possible those drugs helped, but I can't go back to Bactrim because of allergies. Levaquin is a possibility.
I was only on IV Vanco and Oral Pen for 4 weeks in February of 2005 (That is how I got the sepsis, right after I finished the Vanco. I developed an allergy to Vanco 2 weeks into the IV, but I forcefully stayed on it for another 2 weeks, which was quite a devastatingly miserable experience that I don't recommend. I was desperate since it was the first time I'd gotten IV and I really needed to take what I could get. My doctor was not the type of guy to prescribe IV, so the fact that I got it was really incredible.
[ 11-20-2009, 11:57 AM: Message edited by: METALLlC BLUE ]
Posted by massman (Member # 18116) on :
Traditional testing for liver functioning is worse than poor. That means that when the traditional testing finally shows some stress then your liver is really messed up.
Seems to me there has to be a major block that may be the sticking point. IMO so called "science" can and often is poor and unreliable. take a look at the flu vaccine article available on the www.mercola.com site today.
Posted by METALLlC BLUE (Member # 6628) on :
quote: Yes, IV tetracycline exists, but IV therapy has its own problems. My daughter had great results with the 1/week tetracycline and dismal results with rocephin and doxy on a daily basis. If you want to try rocephin, you might try IM first although those shots hurt more than most--that's why my daughter switched to IV on that.
A meyer's cocktail is a mix of magnesium chloride, calcium, B vitamins and vitamin C that is given IV. It can be helpful by itself for patients. I think if someone could come up with some way to compound it to be given in a different method, it would be greatly beneficial for lyme patients!
Deseret Biologicals have several other series that might help you, so you might look at more than just the Bart Series.
Also, I think you could still run your rife machine on say a parasite program or a viral program and still do meds. I am under the impression that you shouldn't treat lyme with antibiotics and run the rife machine due to the possibility of it going into cyst form. I may be wrong about that, but that is what I thought I read.
That's what I've heard too about the Rife/Antibiotics for Lyme. See, I respond to some antibiotics, so it's a big concern that the reason is that Lyme is still a big issue, but the fact that I'm not responding thus far to most of the drugs tried (Or I can't use the drugs that likely were working because of reactions).
The Desert Biological and AI are two products I've heard a lot about, so I'm keeping those in my mental notes. I can do the research on it and get comfortable in the future after I've explored more of these other ideas.
I had IM Bicillin shots, and they hurt like a son of a ***** -- I had to use the 2.4mu later, so I could probably hand the IM Rochephin if the doctor agreed to try it first. There is concern though that IM wouldn't be even close to as effective as IV.
I'm not really thrilled about trying it. I'm not confident at all in that drug for my case. It's possible it could make all the difference, it's just based on my history I have a hard time justifying it's value. He wants to try it though.
[ 11-22-2009, 01:11 PM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
quote: Traditional testing for liver functioning is worse than poor. That means that when the traditional testing finally shows some stress then your liver is really messed up.
Seems to me there has to be a major block that may be the sticking point. IMO so called "science" can and often is poor and unreliable. take a look at the flu vaccine article available on the www.mercola.com site today.
Oh I have no doubts about a lot of the testing criteria. It's just that I tolerate most treatments and detoxify just fine. On that front I've been lucky. Plus I'm not yellow yet, so I feel pretty confident my liver is surviving. My kidney numbers are solid and I haven't had any problems with blood sugar in many years (when I was untreated I had hypoglycemia).
I will keep an eye out though. My LLMD says everything looks good though. It's just a shame that the Rifampin caused such high numbers. Everything returned to normal after I terminated the treatment, but it took about 3 weeks.
My big concern right now is that my immune system is reacting to something -- bacterial or parasitic, and without aiming a tolerable and correct treatment at it, I won't get where I want to go.
I'll keep these concerns noted though because when I see the doctor I want to get more indepth information on his view of these suggestions and his experience.
[ 11-20-2009, 11:58 AM: Message edited by: METALLlC BLUE ]
Posted by Myco (Member # 9536) on :
I would try a two antibiotic combo like mino/zith or doxy/zith and then add in a cyst buster.
You could also try Rifampin again with Zith and see if the liver acts up again. Most people handle it well. Has really worked for my LLMD's patients. Then later you could add a lyme treatment to the mix and a cyst buster.
Also agree that you might want to try Malarone combo.
Posted by D Bergy (Member # 9984) on :
To the best of my knowledge, there is no proposed problem using frequency treatments for any Lyme co-infections while using antibiotics.
There is the theory that antibiotics will chase Lyme spirochetes into hiding, making frequency treatments less effective, but I think even this is based on flawed logic.
I hope you can improve. I do admire your tenacity. I am not sure I could have made it through all the treatments and trials you have experienced.
Good Luck.
Dan
Posted by Hoosiers51 (Member # 15759) on :
Low Dose Naltrexone helped me respond to drugs that I hadn't responded to in the past. I really think it's crucial for some "non-responders."
I would try LDN if you haven't already. Be sure to order it from a compounding pharmacy that is familiar with the logic behind this therapy, so they don't give you the wrong kind (wrong kind, I think, is the extended release...but check). Check www.lowdosenaltrexone.org for recommended pharmacies.
It's not necessarily just for "auto-immune"...it rebalances whatever is wrong with the immune system, even if the immune problem is not known. Or it "seems to."
Have you gotten your IgG subclasses checked? If they are below range, you might literally "need" IVIG. Getting that test done is something else to scratch off the list.
Also, I would try to find some of the other drugs similar to Bactrim (they aren't really used among Lyme/co patients) and try those (check Wikipedia...you'll be able to quickly find which drugs are related to Bactrim). Also, I think you can get one of the ingredients in Bactrim on it's own. Maybe you could tolerate that without the allergy.
But be sure it was an allergy too, of course, and not just something mistaken for an allergy. Obviously allergies should be taken seriously though.
Have you tried HIGH dose Amoxicillin (PM me for dose if curious)? Or higher doeses than normal of Bicillin? Those are two of the only Lyme antibiotics that REALLY help me. If I wouldn't have found them, or Bactrim, I'd probably be still doubting anything would work.
Posted by tmmort (Member # 14013) on :
Hi Metallic Blue!
I am just amazed at how well you have tracked past treatments and how well you communicate in your posts
I'm sorry that you haven't seen more progress. I've tried many different treatments over the past 6 years, only I couldn't possibly recap like you have. I think your brain is working well!
The LLMD i was seeing thinks that it's Babesia that is keeping me from getting well. That and who knows what else?
Keep trying.....you can get to 50%
Posted by keltyl (Member # 14050) on :
Metallic Blue...I could have written that post myself. Right now I'm on plaquenil,Factive(every day), and IV rocephin. Been on lots of others too.
I have bugged my LD about parasites for months and months. I tried Humaworm and broke out in hives. Finally got a call the other day, he's sending me to a infectious disease dr in NYC who deals alot with parasites. I rally feel it's a problem for me and will be the answer to my prayers.
Posted by Hoosiers51 (Member # 15759) on :
Just read another one of your posts here.
Since Bicillin caused mild herxing, you may just need to try the LDN first (to be sure your immune system is ready to do it's job), then do a higher dose of Bicillin. Some people get the 2.4's, twice a week, I believe.
Or to take the easy way out (no shots=less hassle), look into VERY HIGH doses of Amox. Again, PM me for doses. They're high, but they really help. Amox crosses into the brain in very high doses. In the standard Lyme doses, it probably does not.
I only weighed 100 lbs, and I was taking gobs of Amox, so I'm sure it won't hurt anyone. It's a pretty safe drug. Some LLMD's have caught on to this high dose Amox thing. I got to the point where my mouth would literally water when I saw the pills. It wasn't hurting my body at all, it's a safe-"er" drug.
High does Amox is the first thing that ever helped me. I have been treating for 8 years. Tried a lot of stuff, like you.
Posted by lou (Member # 81) on :
Having a lyme brain, I can't remember if you said when you took the plaquenil. It has been suggested that this drug increases the efficacy of biaxin/zithromax. One lyme doc alternates this with tetracycline. As for minocin, I too had the dizziness thing and quit taking it. Later restarted and the dizziness was no longer a problem. Don't know why.
( I edited this post because the tetra with plaquenil part was wrong; it is macrolides that are said to be more effective with plaquenil, at least by some accounts.)
Also, art and clindamycin helped me. It sometimes is the right combo, rather than the individual drugs themselves.
Some people have found lariam to have nasty side effects, others thought it worked great. Groovy has developed his own approach to babesia, can read his posts on the subject.
You have so many pathogen problems and a prior history of steroids, so this has got to be a factor in your response. Some doctors describe it as peeling the layers of an onion, not to expect any one treatment to do the whole thing.
IMO, this is why tickborne diseases are chronic, so hard to treat, complex. It is almost too much for any one doctor or any group of doctors to deal with this much complexity and unknowns.
The opposition, of course, would just say you were nuts. I would say instead that anyone who persists in such a difficult situation is heroic.
[ 09-27-2009, 09:36 AM: Message edited by: lou ]
Posted by Hoosiers51 (Member # 15759) on :
Clindamycin is on my list of things to try too. Some people really seem to do well on that drug. Thanks for bringing it up, Lou.
Posted by springshowers (Member # 19863) on :
MM Wow You have a huge long list of things you have tried and done. I am so sorry your in the position you are but can relate!...
I have no answers sadly or even suggestions since I have not yet found what works for me either.
I though and feeling hopeful about some treatments that include an integrative approach of homeopathic and conventional treatments that include things like IV Abx and also IV Ozone and UVB treatements and IV Nutritional treatments and IV EDTA or DMSO and Peroxide and such. Hitting the blood hard.
But .. who knows... and I have had some better days and worse days while trying it so far.
I am finding that this crap really hides inside your tissues and lymps and organs and such. When I do any detox treatments that hit those areas I am dead to the world. It is so painful. I have been given some Cold Lazer tretments on my lymph areas and I am within one hour sweating and headaches and flush and tired and I lay down and do not get up for days. Uggghhh.
I am torn on detox but know it has to be done. I can treat sometimes and start to feel better but then relapse. But when I treat and do lots of detox I am feeling so horrible the whole time. I hate messing with these bugs and do not know if it is possible to rid them all. IT does not feel like it is possible.
You post is a huge picture into many of our lives of all the trials and effort we put forth into this disease and yet still not able to get well.
Its discouraging yet gives a good reality into the strength of this illness and how there is no answers that are clear cut for us.
TO get to a point where we can live somewhat " with " the disease and have a somewhat of a quailty of life that we can accept is all I can ask for anymore. I have not found a single doctor who said this is a curable disease.
I wish I could help. I feel for you and I hope you find something to help better and moreso than the other things you have tried..
I do want to note one thing. THere have been times I have taken a combo of meds that I just could not tolerate or I had a bad resonse to and I Swore I would never try it again. Somehow it came full circle and my doctor would ask me to try it again maybe a year or two later. And when I would the experience was nothing like the first one. It really made me think. I am not sure why this happens but it does. So I try to not rule out things that did not work before.
Now that opens up a whole nother world doesn't it?
Posted by JamesNYC (Member # 15793) on :
Wow, MB, that is an impressive history!
Coincidently, my symptoms were almost the same as yours at the same time as yours, in 1987. I was told it was CFS, of course.
I got bitten up in the Berkshires, not too far from you.
But what kind of super tick bit you to give you all those infections? Did you ever see it (or them?). How could you have been infected with all those bacteria? I mean, that is incredible, you have almost all of them!
In your sx list you didn't mention UTIs or prostate problems. Are those like the ONLY sx you didn't have?
I'm surprised that you've not been on IV rocephin (unless I missed that one somewhere). I would have thought you'd be on that.
Also, I think you weren't on some of those abx for long enough. I agree with Abxnomore.
And with all your infections, how do you distinguish one improving from all the others that may not? Maybe you were finally getting the advantage on one, but the others were causing more of the sx, you couldn't tell, and assumed the tx wasn't working.
I'll bet all those bacteria are cooperatively suppressing your immune system.
4 months of Mepron seems a little short. I've been on it for 4 months now, and probably will be on it for another 4, but did 6 months last year.
Anyway, man, I'm sorry to hear about what you've gone through. They should make a documentary about you! You are everything that the IDSA says can't be.
I hope something works eventually.
James
Posted by lou (Member # 81) on :
hoosier -
Clindamycin is said not to work on lyme disease. Not sure if this is true or not. Maybe it is working on one of the other unidentified bugs in our blood, of which I have several. If a parasite with a cyst form, this could explain why it works but there were relapses. The toxoplasma drugs have this action, plus nasty side effects for some people. I don't think the anti-parasite drugs are specific, they seem to use the same thing for a number of different ones.
And there is a clinical trial coming up for a new drug that is said to work for both malaria and toxoplasma, presumably other parasites. Hits the cyst form too. But the first trial will be for malaria, and some time in the future the drug would be available for off label use. Hope it does well in the trial and doesn't take forever to come to market.
Posted by massman (Member # 18116) on :
How can you tell that you detox fine ?
And how about a LLND that may look at the problems differently than a LLMD ?
Posted by tick battler (Member # 21113) on :
Wow Metallic, hang in there. Your persistence and attention to detail will pay off! I'm sure you mentioned this, but I missed it - how long have you been treating?
Just some thoughts that came to mind:
- I agree that the parasite thing is real...salt/c could be a low risk option to try for a while...I think Dr. K treats parasites first, before going after Lyme. Once you knock them down, perhaps you can get a better response with the lyme meds.
-also - I was impressed with groovy2's protocol for babs - maybe try something like that or the quinine/clind option. Sounds like you still have it and I have heard many times that it is BABS that keeps us from getting well. You have made some progress, but are still having sweats...so it appears it's still there. It can take one or two years to get rid of. My boys have been treating it for a year with Mepron/biaxin/artemisinin and are much, much improved but the symptoms come roaring back when they go off the meds.
- the rife thing might be worth trying. I have not heard that it is contraindicated with abx. I am going to ask Dr. H about it on Oct when I see him. John told us on our recent phone consult that he has seen it work in 10% of people and the others herx too strongly on it. I would imagine this is b/c they do too much the first time. John didn't talk much about it but was wary of the safety. He didn't deny that it probably killed lyme, etc.
Good luck to you.
tickbattler
Posted by Healing in Santa Cruz (Member # 7798) on :
If you haven't already get checked for Pyrroluria KPU. Also Homocysteine levels. I did 4yrs years straight of lyme and co,parasites killers and only got sicker. I came up high positive on the pyrroluria urine test and then High Homocysteine. http://drrandy.org/article.html Posted by bettyg (Member # 6147) on :
quote:Originally posted by tmmort: Hi Metallic Blue!
I am just amazed at how well you have tracked past treatments and how well you communicate in your posts
mort, you hit it right on the nail; mike has such detailed, specific records that we can all learn from mike's examples he's shown above!!
well done mike! don't take the time to adress my comments ok! save your energy and time for others hugs/kisses my friend...
Posted by Robin123 (Member # 9197) on :
quote:Originally posted by lou: hoosier -
Clindamycin is said not to work on lyme disease. Not sure if this is true or not.
Lou - clindamycin is just about the only abx I can take and it has been successfully treating me since I tried it three and a half years ago.
I have just Lyme, no co's. Slight possibility I could have mycoplasma - haven't tested for it.
Within a week's time of 150mg 4x/day, it took my fibro pain to zero and reduced joint pain greatly.
I herxed after one month - ie, with profound fatigue. I reduced down to about 2/day, which I continue to do.
Still continues to work. If I don't take it, these symptoms return.
I've never had C diff with it. Had that with erythromycin once.
I noticed it's not on Mike's long list. Wanna try it, Mike?
Posted by lou (Member # 81) on :
Also, some people have been found to have hypercoagulation (thick blood). Do hemex panels to find this out. Could prevent the abx from working as well.
Robin, glad you found something that worked. That is not a very big dose. Is it oral? But a lot of us may have other unidentified bugs that clindamycin may be hitting. The fact that you don't know about them does not mean they aren't there! Treatment seems to be a trial and error thing so often, because we don't know entirely what we are dealing with.
Posted by METALLlC BLUE (Member # 6628) on :
quote: MycoI would try a two antibiotic combo like mino/zith or doxy/zith and then add in a cyst buster.
You could also try Rifampin again with Zith and see if the liver acts up again. Most people handle it well. Has really worked for my LLMD's patients. Then later you could add a lyme treatment to the mix and a cyst buster.
Also agree that you might want to try Malarone combo.
I am considering most of these options, including attempting Rifampin again perhaps. Others have recommended the rest of what you've said, so that'll be on the table too.
quote: D BergyTo the best of my knowledge, there is no proposed problem using frequency treatments for any Lyme co-infections while using antibiotics.
There is the theory that antibiotics will chase Lyme spirochetes into hiding, making frequency treatments less effective, but I think even this is based on flawed logic.
I hope you can improve. I do admire your tenacity. I am not sure I could have made it through all the treatments and trials you have experienced.
Unfortunately, with all these different therapies, adding the Rife in during such violent transitions would complicate things -- this is per the advice of my LLMD. It'll still be an option for later though. After all, I already have the machine. Thanks man, I'll need the luck.
quote: cottonbrainHave you tried a gluten-free diet?
Yes, improved bloating and gas. However, other foods cause the same symptoms, including come meats. Just about everything seems to cause the digestive upset. It improves with antibiotic therapy to various degrees. I'm on high dose probiotics as well, but that made no difference, even after 4-5 months.
quote: cottonbrainDo you eat many sugars or refined carbs?
Yes, if I restrict everything, I noted no change, so I stopped trying. Unfortunately I've found the only thing that restricting everything does, is make me unhappy without improving my situation. If it helped, I'd keep it up, but it just didn't make much difference.
quote: cottonbrainHave you tried lumbrokinase or heparin for biofilm penetration?
This I only did while on IV Vanco and Oral Penicilin. IV Heparin was given during the entire process to keep the lines clear. Whether it helped or not, I don't know given the time period. I was on those drugs, and then I got sepsis about 1 week after discontinuing the IV therapies. I was then hospitalized and given high dose IV Levaquin/then Oral, and Oral Bactrim. It was a month later, in 2005 that I suddenly had a massive surge of progress. I can't help but think it's the Bactrim and Levaquin and only mildly the IV. It's unknown though. I can't return to Bactrim, given allergies developed (Or at least a red-man rash). I can try the Levaquin again however. Have you tried the modified Yasko approach for CFS?
quote: cottonbrainHow about the methylation cycle block protocol by rich kronenburg(sp)?
Haven't tried it. We considered it with the LLMD but we both agreed that this just doesn't make sense given my patterns. Detoxification and liver function have always been stable. I'll keep this in my notes though, just incase I need to return to the idea.
quote: cottonbrainThere's also Dr Pall's NO-OONO protocol -- don't know if i've got that right.
Haven't tried it. I'll do research on it.
quote: cottonbrainHave you checked that your drugs are not interacting with your supplements? My LLMD prefers that i not use too many supps, since interactions aren't well known. I noticed that you used Grapeseed extract -- that has a lot of interactions, i think (?).
My LLMD said none of the drugs used would interact, but he did say to take my supplements far away from my antibiotic therapies as well as some herbal therapies, which I did. The Grapefruit Seed (Not Grapeseed) is what I used in the past, and we did check in advance to make sure it didn't interact. I do have concerns though that somethings could still interact without our knowledge, -- as you said, so this could be possible even though the LLMD and I confirmed what wouldn't interact.
quote: cottonbrainDo you have any gold crowns on your molars? Some contain high levels of palladium, a toxic metal.
Fortunately I have perfect teeth. Luck of the draw on that front, so no dental work.
quote: cottonbrainHave you had your house checked for toxic mold?
I was, and the numbers were very abnormal. We treated it initially with 2 weeks of Diflucan. I was skeptical that this would be enough, and so we retested me. The numbers had come down about 1/3, but I still felt the treatment was inadequate and so I now convinced the doctor to give me a drug called VFEND, and it's much much stronger than Diflucan.
quote: cottonbrainHave you had your house checked for Radon?
I had considered this and I'm pretty sure I asked my mother a few years ago if they confirmed this. I'll ask again, I want to be perfectly clear. I highly doubt it's the source of my problem but it's important nonetheless.
quote: cottonbrainDo you have any of the newer toxic drywall in your house?
It's possible, the entire house was rebuilt about 6 years ago. I did in-fact have mold problems in one area of the house. When I moved in, the pain used was cheap. The bathroom filled with your typical black mold on the ceiling. I'm not certain this is the dangerous kind since not all black mold is a problem, but regardless, I still went ape**** in trying to get the problem resolved and to get a vent put in. Now the ceiling is spottless, since we killed all the mold and used a special paint. I am frustrated by one issue though. They installed the vent, but only had it release into the upper atic, which is apparently a common method -- but in my opinion it's stupid and could result in mold in the atic -- but I'm no specialist on the issue either.
quote: cottonbrainDo you ride in your car a lot? Does it outgas chemicals from the plastics? Does it output a lot of electomagnetic radiation from the dash area?
No, no, and no. It's a Hyndai Elantra. I have no "interesting" interior gadgets aside from my small GPS, but I've been sick long long before I even bought this car. I don't feel any better driving, leaving the house, or going anywhere as well -- which tells me I don't have a chemical sensitivity. I can tolerate -- without feeling sicker -- just about any smell that I come in contact daily.
quote: cottonbrainDo you have mouse poop in your house? (sounds stupid, i know, but this can be toxic too)
I did. I got mouse traps, killed the *******s (I know..inhumane, whatever) and then I cleaned up everywhere with bleach. This was awhile ago, but again I had the problems long before this event.
quote: cottonbrainHave you tried sleeping under a wireless tent and/or using special paint to block EMF's in your bedroom?
No, but I really don't think EMF is the problem. It is possible of course, and I know a lot of patients who have. If it came down to it and nothing else ever worked, I'd probably go as far as installing one though -- but for now, it'll have to be on the back burner.
quote: cottonbrainMB, I'm in a similar boat to yours, seems like I am only inching forward occasionally, and then nothing -- above are some strategies I plan to employ. Right now I'm working on amalgam removal.
I'm real sorry to hear you're struggling too. I was fortunate not to have Amalgams at any point, but even though I didn't, I did still have high mercury and lead. Both of which I detoxed for about a year now. We could recheck the numbers, but I doubt that's related. Nothing improved even with long term chelation. Keep us updated on how you do -- especially me!
quote:Hoosiers51 Low Dose Naltrexone helped me respond to drugs that I hadn't responded to in the past. I really think it's crucial for some "non-responders."
I would try LDN if you haven't already. Be sure to order it from a compounding pharmacy that is familiar with the logic behind this therapy, so they don't give you the wrong kind (wrong kind, I think, is the extended release...but check). Check www.lowdosenaltrexone.org for recommended pharmacies.
It's not necessarily just for "auto-immune"...it rebalances whatever is wrong with the immune system, even if the immune problem is not known. Or it "seems to."
Unfortunately I had massively strong side effects from LDN. We tried but I just couldn't tolerate it. The doctor has considered trying 1mg or even 1/2 of a mg. It's a possibility in the future.
quote: Hoosiers51Have you gotten your IgG subclasses checked? If they are below range, you might literally "need" IVIG. Getting that test done is something else to scratch off the list.
Got it done. All was normal.
quote: Hoosiers51Also, I would try to find some of the other drugs similar to Bactrim (they aren't really used among Lyme/co patients) and try those (check Wikipedia...you'll be able to quickly find which drugs are related to Bactrim). Also, I think you can get one of the ingredients in Bactrim on it's own. Maybe you could tolerate that without the allergy.
Great idea.
quote: But be sure it was an allergy too, of course, and not just something mistaken for an allergy. Obviously allergies should be Hoosiers51taken seriously though.
I turned red, like I had a bad sunburn. Interestingly, it also "felt" just like a sunburn. There is only one problem though. I wasn't exposed to the sun -- not even remotely. I keep all my shades down and I hadn't gone out the entire time I was on the Bactrim. I'm pretty sure it was an allergy, but I'd have to be tested to confirm it. I'm not sure they have a test for Bactrim allergy though? Do they?
quote: Hoosiers51Have you tried HIGH dose Amoxicillin (PM me for dose if curious)? Or higher doeses than normal of Bicillin? Those are two of the only Lyme antibiotics that REALLY help me. If I wouldn't have found them, or Bactrim, I'd probably be still doubting anything would work.
I used the highest dose possible of Bicillin. 2.4mu. It was painful as hell. Most people get the regular dose of 1.2 per dose, that's 'Half' -- talk about insane. That's how far we've been willing to go. I did not try Amoxacillin though. Is there a difference that would be significant enough to try? I did Omniceft, but saw no results.
quote: tmmortHi Metallic Blue!
I am just amazed at how well you have tracked past treatments and how well you communicate in your posts [Smile]
I'm sorry that you haven't seen more progress. I've tried many different treatments over the past 6 years, only I couldn't possibly recap like you have. I think your brain is working well!
You'd be surprised by how much difficulty I have. The difference is, I use the edit key a lot, and I compensate like that poor guy from Memento. I record "everything" -- no matter how trivial. Daily journals of meds, how I feel. I then condensed all the material over time into a document covering about 20 years. Give me a list of names to remember, or repeat your phone number ten times, and I probably can't tell you much. I play video games, and I get my *** handed to me, because I can't "think" as fast nor respond as far as opponents. Worse still, my motor cordination is poor, so writing "hurts". I have to hold the pen so tight to force my hand to keep the letters looking like letter. I don't even bother trying to write by hand because it hurts having to grip it. I'm sure other members know what I'm talking about.
quote: tmmortThe LLMD i was seeing thinks that it's Babesia that is keeping me from getting well. That and who knows what else?
Keep trying.....you can get to 50%
Thank you very much. I'm just trying to inch forward. I've been sick my entire life, so I just don't know what it will be like to ever be 100%. All I know is how I function relative to the "average" people I know. I've seen glimpses of higher function, which can't possibly just be accidents, but rather normal abilities I'd probably have if I was well. Strange abilities, like actually remembering things that otherwise would boggle me up. It's strange seeing strengths come out and then disappear as quickly. One day I'll get there though.
quote:keltylI could have written that post myself. Right now I'm on plaquenil,Factive(every day), and IV rocephin. Been on lots of others too.
I have bugged my LD about parasites for months and months. I tried Humaworm and broke out in hives. Finally got a call the other day, he's sending me to a infectious disease dr in NYC who deals alot with parasites. I rally feel it's a problem for me and will be the answer to my prayers.
quote:
Gael has consistently reminded me over time about this, and I take it seriously. It may be a problem. Many of the drugs recommended in this thread would hit a variety of parasites, so it's a possibility I'd kill them in the future.
Just read another one of your posts here.
Since Bicillin caused mild herxing, you may just need to try the LDN first (to be sure your immune system is ready to do it's job), then do a higher dose of Bicillin. Some people get the 2.4's, twice a week, I believe.
Yeah, I did that (Both 1.2, and then 2.4 for awhile). It just didn't work out with the LDN.
quote: keltylOr to take the easy way out (no shots=less hassle), look into VERY HIGH doses of Amox. Again, PM me for doses. They're high, but they really help. Amox crosses into the brain in very high doses. In the standard Lyme doses, it probably does not.
You can post them (Or PM). I'm sure we're talking 4 to 6 grams per day if I had to presume.
quote: keltylI only weighed 100 lbs, and I was taking gobs of Amox, so I'm sure it won't hurt anyone. It's a pretty safe drug. Some LLMD's have caught on to this high dose Amox thing. I got to the point where my mouth would literally water when I saw the pills. It wasn't hurting my body at all, it's a safe-"er" drug.
High does Amox is the first thing that ever helped me. I have been treating for 8 years. Tried a lot of stuff, like you.
Thank you for contributing this information. I hadn't though of going "real" high on the Amox, just at a traditional dose by LLMD standards.
quote:louHaving a lyme brain, I can't remember if you said when you took the plaquenil. It has been suggested that this drug increases the efficacy of biaxin/zithromax. One lyme doc alternates this with tetracycline.
Mr. Boston does. I did the Plaquenil with Biaxen for about 3 cycles of 6-8 months each. No results were seen. Zithromax and Amantadine were tried later for one cycle but it only lasted about 2-3 months. I saw no results from that. The Tetracycline is the only thing that "really" gives me worthwhile percentage points, but still, it doesn't get me past the plateau. I keep going back to it though when I feel I can't take anymore of being homebound.
quote: louAs for minocin, I too had the dizziness thing and quit taking it. Later restarted and the dizziness was no longer a problem. Don't know why.
Same here. I did it, got dizzy. Restarted later at a much lower dose, then boosted the dose over a few weeks. I reached 200mg finally, and took it for awhile. All of this was combined with a lot of other meds. Nothing worked unfortunately. Most combos just haven't clicked, but fortunately for me a lot of people chimed in here with new combinations that I haven't done. They also made it clear that duration may be a factor.
I'm not sure why duration is a factor though given I respond so effectively and quickly to Tetracycline. I mean, it doesn't take these drugs months to get into my system, so I would presume if the Tetracycline is hitting an infection -- which it must given the intense clock-work fashion of the Herxheimer response and then the recovery. I would presume other drugs would follow a similar pattern -- perhaps a little shorter or longer, but not "months" in a case like mine.
When new patients start treatment, they're so heavily infected that it does take 6-8 months for even a glimpse of progress. Some see that progress, then it disappears and doesn't return until well over a year or two.
But me? I respond and gain 10% in only two weeks with Tetracycline? What is going on there, that's what has me wondering? And why does Tetracycline work, but Minocycline and Doxycycline didn't work as well? Although, the Doxycycline "was" working very very similar to Tetracycline for a few weeks, and it too followed the exact 2 week spectrum that I mentioned earlier. The only difference was, the progress came and went quickly, while Tetracycline leaves the progress for about 6-8 months until it wears out and needs to be stopped for two months, and then restarted so that it starts working again.
quote: lou( I edited this post because the tetra with plaquenil part was wrong; it is macrolides that are said to be more effective with plaquenil, at least by some accounts.)
Right, I understood that.
quote: louAlso, art and clindamycin helped me. It sometimes is the right combo, rather than the individual drugs themselves.
Yeah, others mentioned that. I'm keeping that idea higher on my list, as well as the drugs for Babesia and other parasites. It only seems appropriate given the strong responses to Malarone.
quote: louSome people have found lariam to have nasty side effects, others thought it worked great. Groovy has developed his own approach to babesia, can read his posts on the subject.
I heard about that. It was recommended by my LLMD, but I turned it down at the time since my girlfriend had atrocious side effects and I wasn't interested at the time in visting it myself. I suppose it's a possible option again, given I might run out of other less risky choices. I would do Lariam before IV, obviously.
quote: louYou have so many pathogen problems and a prior history of steroids, so this has got to be a factor in your response. Some doctors describe it as peeling the layers of an onion, not to expect any one treatment to do the whole thing.
IMO, this is why tickborne diseases are chronic, so hard to treat, complex. It is almost too much for any one doctor or any group of doctors to deal with this much complexity and unknowns.
Absolutely. The good news is that the steroids were used 9 years ago. I've taken a lot of immune stimulants and done a great job of healing myself. I had bone loss, kidney stones and skin damage from the steroids. Now my bones are strong, no stones in 9 years and my numbers on all my tests for my immune system are "relatively" good, aside from the CD57 which was 85, but even still, that's not a danger number. There is most certainly a dysregulation going on with the immune system though -- even if the numbers are right, but I think the key is in the pathogens. I think treatments aimed at those are more probable to result in improvement -- at least right now. If this ends up not being the case, some members have recommended immunologists that I could try. I'll gather information down the road on that. I'm going to copy this entire post when it's all done, and refine it so I have simple notes on all the recommendations.
quote: louThe opposition, of course, would just say you were nuts. I would say instead that anyone who persists in such a difficult situation is heroic.
I wish I saw myself as heroic, but really I see myself as an organism just trying to survive. It's in my genes, and death or ongoing suffering just doesn't appeal. Now if I ran into a fire to save someone else? Then I might be open to a compliment. It's all philosophy though.
quote: springshowersMM Wow You have a huge long list of things you have tried and done. I am so sorry your in the position you are but can relate!...
I have no answers sadly or even suggestions since I have not yet found what works for me either.
I though and feeling hopeful about some treatments that include an integrative approach of homeopathic and conventional treatments that include things like IV Abx and also IV Ozone and UVB treatements and IV Nutritional treatments and IV EDTA or DMSO and Peroxide and such. Hitting the blood hard.
Some of those ideas you listed are potential options. I'm not malnourished so I doubt Nutrition will help, but EDTA or DMSO (might, .....on a slim whim) be an issue. I don't think detox is my issue, but obviously I've gotta try things systematically. IV Ozone was something my girlfriend has talked about. I'd consider it. UVB didn't help me unfortunately.
But .. who knows... and I have had some better days and worse days while trying it so far.
I am finding that this crap really hides inside your tissues and lymps and organs and such. When I do any detox treatments that hit those areas I am dead to the world. It is so painful. I have been given some Cold Lazer tretments on my lymph areas and I am within one hour sweating and headaches and flush and tired and I lay down and do not get up for days. Uggghhh.
Are you certain it's detoxification reactions? I haven't done Cold Lazer, but I've heard about it here on Lymenet. Might as well add it to the long list in my notes.
Initially when I began detoxing I had anxiety, felt sicker, and generally had a lot more cognitive and CNS issues. After doing the detoxification protocol for a few weeks the symptoms subsided. I stayed on the protocol for a year and never saw progress.
quote: springshowersI am torn on detox but know it has to be done. I can treat sometimes and start to feel better but then relapse. But when I treat and do lots of detox I am feeling so horrible the whole time. I hate messing with these bugs and do not know if it is possible to rid them all. IT does not feel like it is possible.
Well fortunately science and possibilities aren't about "feeling." The reality is, it's possible. If you know the target(s) and you search, you eventually find answers. Whether or not it "will" happen in our lifetime however, that's where we probably get hung up. I think Jesus said it best in Matthew 7:7: "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you."
Religious or not, you can't argue with that philosophy. We stand a good chance of getting from point A (sick) to point B(well), if we actually start actively moving towards the destination. Does anyone have a map? Eek, nope not that I know of, but hey, I've wandered around in dark places blind and still found my way. I banged my shin and elbow into a ****load of hard objects, but I eventually found light.
quote: springshowersYou post is a huge picture into many of our lives of all the trials and effort we put forth into this disease and yet still not able to get well.
Its discouraging yet gives a good reality into the strength of this illness and how there is no answers that are clear cut for us.
Pointing out the obvious has been a wonderful skill in my life (Kidding). We'll figure this out together -- as a community of researchers, patients, families and so forth. We can't help but not do it, because we're curious, desperate and many of us still have faith. I can't say much about the last one, but like I said, I believe the impossible just takes a little longer.
quote: springshowersTO get to a point where we can live somewhat " with " the disease and have a somewhat of a quailty of life that we can accept is all I can ask for anymore. I have not found a single doctor who said this is a curable disease.
It's curable. Sorry to disappoint you though. I'm not a doctor. Anyone who thinks otherwise is a fool. Unless you can predict the future, it's not possible to stake that claim. Just because we can't see it, touch it, and experience it, doesn't mean it's not there waiting to be accessed. The complexity of our situation is a matter of all the comorbid illnesses that stack on top of each other when an immunosuppressive infection(s) get into a poor sad host like us, and generate a lot of variables. We just have to figure out X + Y = 1834948394839874349023457293572903430349643563634634634764
What combinations of numbers give us that conclusion? It's a big task to do in your head, but not impossible.
quote: springshowersI wish I could help. I feel for you and I hope you find something to help better and moreso than the other things you have tried..
I do want to note one thing. THere have been times I have taken a combo of meds that I just could not tolerate or I had a bad resonse to and I Swore I would never try it again. Somehow it came full circle and my doctor would ask me to try it again maybe a year or two later. And when I would the experience was nothing like the first one. It really made me think. I am not sure why this happens but it does. So I try to not rule out things that did not work before.
I agree, and I learned this lesson most heartedly when I tested for Lyme. A negative doesn't mean a negative, and a bad response doesn't always mean the second try will be a repeat with medication.
quote: springshowersNow that opens up a whole nother world doesn't it?
Let's hope there is life on this "other world." Scientist agree that statistically, there are 4 million possible planets that can hold life. If we can get to the moon and and send a mission to Pluto, we can figure out Chronic Lyme and associated diseases.
quote: JamesNYC Coincidently, my symptoms were almost the same as yours at the same time as yours, in 1987. I was told it was CFS, of course.
I got bitten up in the Berkshires, not too far from you.
But what kind of super tick bit you to give you all those infections? Did you ever see it (or them?). How could you have been infected with all those bacteria? I mean, that is incredible, you have almost all of them!
I was likely bitten hundreds of times since I played daily in the woods as a child. I would go down to Rhode Island near the coast and trek through the woods too at length. It probably wasn't one incident that brought me to this point. It's sad to me. I was just a child and didn't know. I sometimes dream about going back in time to warn my younger self. Silly imagination of a desperate man,
quote: JamesNYC In your sx list you didn't mention UTIs or prostate problems. Are those like the ONLY sx you didn't have?
Read the last one. I started having problems urinating at night last year. My numbers for Prostate were normal though. 1.53. My LLMD said "we're going to keep an eye on that, because at your age I don't like to see even that number." I didn't really understand that though. It wasn't my LLMD that told me that though, it was his PA. Who knows. I've had some UTI's but they were mild and I never associated them with Lyme. I mean I've had maybe one or two in my life, but don't most people get them once or so?
quote: JamesNYC I'm surprised that you've not been on IV rocephin (unless I missed that one somewhere). I would have thought you'd be on that.
Everyone, including the LLMD asked me that? Why in the world didn't I use it? My response: Mr. Boston. That pretty much answer the question. When a doctors protocol is nothing more than rotating mono therapies orally, and has an aversion to anything else, including IV -- you kind of go "hmmm." I have no idea how I convinced him to do IV much later though, but his opinion was IV Vanco and Oral Pen, were key, not IV R. I didn't understand then, but I do know Dr. Burrascano is a proponent of IV V -- but only in some cases, and toxicity is an issue in his notes.
quote: JamesNYC Also, I think you weren't on some of those abx for long enough. I agree with Abxnomore.
And with all your infections, how do you distinguish one improving from all the others that may not? Maybe you were finally getting the advantage on one, but the others were causing more of the sx, you couldn't tell, and assumed the tx wasn't working.
I have no idea. I just reported the symptoms systematically like I always did. Things either stayed the same, or go worse -- but not in a "Herxheimer" worse kind of way. My herxheimer responses are extremely repetitive. When I have them, all the same symptoms increase at the same rates. As far as the duration, again -- I would have stayed on longer if the LLMD thought otherwise. I made suggestions that it wasn't long enough, but he told me "No no, you would absolutely have seen progress with this, or that." Since he's one of the best in the world, I presumed he knew better than me -- especially since I had done other therapies long term and saw nothing. Like I said, I respond so fast to Tetracycline, so I don't know what's going on.
You're right though, it's still a possibility that concerns me. I can have whatever drugs I request from my Primary, so I could self-treat if I chose, but I don't think it's a bright move just yet, not until I've exhausted this "World renown" LLMD's advice. I'll consider seeing another LLMD if necessary as well, but really, how much better is there than my LLLMD?
quote: JamesNYC I'll bet all those bacteria are cooperatively suppressing your immune system.
I bet they're too. We're going to have to keep attacking this from a lot more angles -- and we will, even if we have to go way out into left field. We'll do it all, in all combinations -- until the answer is found. I made a commitment to figure this out, and while I get discouraged, angry, fatigued and sometimes feel like quitting -- I just stop, and relax, even if it means months of surrendering -- but I always get back up. That's what life is all about. How many times can you get up after being knocked on your ***?
quote: JamesNYC 4 months of Mepron seems a little short. I've been on it for 4 months now, and probably will be on it for another 4, but did 6 months last year.
I thought so too, but the LLMD said "nope nope, we're switching now to Malarone." It made sense to me, since I wasn't seeing results anyway and the Malarone was going to go after the same thing. Once on the Malarone I made progress. So, was he right or wrong? I don't know yet. All I know is it's helping those particular symptoms (Sweating, and Breathing).
quote: JamesNYC Anyway, man, I'm sorry to hear about what you've gone through. They should make a documentary about you! You are everything that the IDSA says can't be.
I hope something works eventually.
It's true, positive tests on the IGM and everything. There is something important to note. With Tetracycline alone, my Brain SPECT scans went from severely abnormal, to entirely normal after 4 years of treatment. I repeated the scan 2 more times since then, and they were normal. The doctor who did the scans at UMASS memorial saw the progress and is Lyme Friendly.
So, something about Tetracycline is hitting that scan too. Lyme is currently "assumed" to cause abnormalities in our BRAIN SPECT scans, but perhaps it's not the only thing? Maybe it is though. Either way, in 2008, my IGM was lit up like a christmas tree, with a positive NYS, CDC, and by Igenex criteria. When I showed Mr. Boston, he was shocked. Moments before I pulled out the lab he was telling me that maybe my problems weren't Lyme, and that was why I wasn't getting better. I said, maybe it's not "just" lyme, but Lyme is "100%" apart of the problem still. He said, how do you know? I pulled out the lab and he nearly fell out of his chair. There is "NO WAY" a test could be that positive via IGM and multiple IGG bands, after IV Vanco, Oral Pen, Tetracycline, Biaxen, Plaquenil, Zithromax/Amantadine, Bactrim, Levaquin. No way, right?
False positive the IDSA would say. No way, no way. Everything is compatible. The Lyme is a major player still, and something is keeping it that way......like a parasite, or another infectious disease. Perhaps possibility another factor even that we haven't considered, but I'm running out of ideas about what else it could be, so that's why I came here.
quote: lou Clindamycin is said not to work on lyme disease. Not sure if this is true or not. Maybe it is working on one of the other unidentified bugs in our blood, of which I have several. If a parasite with a cyst form, this could explain why it works but there were relapses. The toxoplasma drugs have this action, plus nasty side effects for some people. I don't think the anti-parasite drugs are specific, they seem to use the same thing for a number of different ones.
And there is a clinical trial coming up for a new drug that is said to work for both malaria and toxoplasma, presumably other parasites. Hits the cyst form too. But the first trial will be for malaria, and some time in the future the drug would be available for off label use. Hope it does well in the trial and doesn't take forever to come to market.
This brings me back to the Dr. Fry smear. Positive, but what is it? Is it even a pathogen that's dangerous? We just don't know 100% (last I heard anyway). Have things changed on that front recently? Does he know what he's seeing on those tests?
quote: How can you tell that you detox fine ?
Well I suppose my subjective view would make it impossible to say it's a fact, but I feel zero, using all the detoxification methods. I have no chemical sensitivities like most people with that problem. I have been on detoxification protocols to address all aspects of the process over the last year, and my LLMD said he also thinks it's not an issue.
It's possible though. It's just not an area we're focused on given there are so many others that seem more probable at the moment. I won't abandon the possibility though.
quote: massman And how about a LLND that may look at the problems differently than a LLMD ?
The suggestion will probably be made by my LLMD if nothing else works. He has a handful of people who he refers out when cases just don't respond. There is also the Chinese Medicine physician he wants me to see, so I'm still considering that.
quote: tick battler Wow Metallic, hang in there. Your persistence and attention to detail will pay off! I'm sure you mentioned this, but I missed it - how long have you been treating?
7 years in total. Progress has been slow, but I gained about 1/3rd of my health back. I was dying prior to diagnosis. A real **** storm, if you know what I mean.
quote: tick battlerJust some thoughts that came to mind:
- I agree that the parasite thing is real...salt/c could be a low risk option to try for a while...I think Dr. K treats parasites first, before going after Lyme.
He's in Washington state, is that right? I've read some of his work. I'd have to review it. Salt C is something I'm not considering until much much further down the road. you knock them down, perhaps you can get a better response with the lyme meds.
Yeah, we'll discuss it when I see him next.
quote: tick battler-also - I was impressed with groovy2's protocol for babs - maybe try something like that or the quinine/clind option. Sounds like you still have it and I have heard many times that it is BABS that keeps us from getting well. You have made some progress, but are still having sweats...so it appears it's still there. It can take one or two years to get rid of. My boys have been treating it for a year with Mepron/biaxin/artemisinin and are much, much improved but the symptoms come roaring back when they go off the meds.
Yeah, combinations will be discussed. What is Groovy's protocol anyway? Anyone know?
quote: tick battler- the rife thing might be worth trying. I have not heard that it is contraindicated with abx. I am going to ask my LLMD about it on Oct when I see him. John told us on our recent phone consult that he has seen it work in 10% of people and the others herx too strongly on it. I would imagine this is b/c they do too much the first time. John didn't talk much about it but was wary of the safety. He didn't deny that it probably killed lyme, etc.
He said the same thing to me -- verbatim in-fact. I have the machine, and I've done a lot of research on it before I bought the machine. What intrigues me is all the patient reports of people who "do it right." Doing it right is subject though, because all we have are the patient reports thus far. The fact that "a lot" of people experience positive progress is what turned me on. When a very high percentage of people follow a systematic pattern based on prior patient reports, the reactions are controlled carefully, and treatments only done every 1-2 weeks at first. Some require resting even longer, since the response can be intense, but they keep chipping away, and they report that if they hold fast, that 6-12 month into treatment, it becomes noticeable that it's working. It's a commitment though, and that combined with listening to my physician first, are why I'm waiting. I have to exhaust things in a pattern, else I risk jumbling things and not knowing what is doing what and why and how is my body going to deal with it?
This is why I ran metabolic panels for every single drug after using them for a week -- even the less harmful ones. Mixing drugs or treatments without knowing would screw me. I once made the mistake of starting drugs in a combo because the PA told me "don't worry about it" -- and against my better judgment I did. One week later, my Liver enzymes were ALT 296, and AST 153 respectively. Talk about screwing the pooch. I was on about 15 things and didn't know which drug, or which combo -- contributed to that, so it took me over 2 months to restart everything and figure it out. Rifampin was the culprit, and it only took one day of using it for the blood work to shoot through the roof. I'm still not 100% confident today that the Rifampin did it, or could do it again. It could have been an isolated incident. It took 3 weeks for the levels to return to normal. I tested weekly to confirm the progress and to determine that the test itself wasn't a fluke.
So .... what a mess this all has been.
quote: Healing in Santa Cruz If you haven't already get checked for Pyrroluria KPU. Also Homocysteine levels. I did 4yrs years straight of lyme and co,parasites killers and only got sicker. I came up high positive on the pyrroluria urine test and then High Homocysteine. http://drrandy.org/article.html
I'll keep that in mind. Homocysteine levels have all been normal. I have not dealt with KPU though as it seemed presently to be the least probable issue. As usual though, it could be an issue, so I'll take note.
quote: BettyGHi Metallic Blue!
I am just amazed at how well you have tracked past treatments and how well you communicate in your posts [Smile]
mort, you hit it right on the nail; mike has such detailed, specific records that we can all learn from mike's examples he's shown above!!
I'll offer this. I rewrote Betty's original Lyme Disease package (No offense to Betty, she did an awesome job of collecting so much data). It's about 100 pages. It will include the method by which I recorded my data. However, it's taken me over a year to rewrite it and I still haven't had the energy to finish it. I can give basic formats to people who wish to e-mail me though. In-fact I'd be willing to let people post the template online. I have one for individual appointments, and one main Medical Record that records the entire history into about 20 pages. The actual medical records themselves -- the originals from various doctors, is about 2-300 pages. So, 20 pages of condensed data which is easy to read and easy to reference very quickly (within seconds) could help other patients. You have to know how to use Word or some other program that allows you to create tables though if you chose to make your own.
quote: Robin123 Lou - clindamycin is just about the only abx I can take and it has been successfully treating me since I tried it three and a half years ago.
I have just Lyme, no co's. Slight possibility I could have mycoplasma - haven't tested for it.
Within a week's time of 150mg 4x/day, it took my fibro pain to zero and reduced joint pain greatly.
I herxed after one month - ie, with profound fatigue. I reduced down to about 2/day, which I continue to do.
Still continues to work. If I don't take it, these symptoms return.
I've never had C diff with it. Had that with erythromycin once.
I noticed it's not on Mike's long list. Wanna try it, Mike?
It's absolutely a possibility that I'll bring up with the doctor.
quote: LouAlso, some people have been found to have hypercoagulation (thick blood). Do hemex panels to find this out. Could prevent the abx from working as well.
Robin, glad you found something that worked. That is not a very big dose. Is it oral? But a lot of us may have other unidentified bugs that clindamycin may be hitting. The fact that you don't know about them does not mean they aren't there! Treatment seems to be a trial and error thing so often, because we don't know entirely what we are dealing with.
Absolutely. It's all experimental, and that's why most doctors won't touch us. The reality is though that science doesn't progress without experimentation and hypothesis. We try as hard as possible to narrow down the variables, but sadly without the tools and knowledge -- most of us aren't savvey enough in a laboratory to get down to the bottom-line.
Someone will though, that is very very likely. I'd like it to be sooner rather than later though!
Thank you so much for all of your responses. I'm trying hard here to figure out what's going on. Sorry for the length of this post but I wanted to make sure I responded to every contribution. The cliff notes for those who haven't read everything? We covered an awful lot of possibilities.
[ 11-20-2009, 12:04 PM: Message edited by: METALLlC BLUE ]
Posted by Bugg (Member # 8095) on :
Metallic Blue-
I am so sorry that you have struggled so profoundly for so long. I wish I had the "magic answer" for you.
If you should ever want it, I can PM you the name of a highly-regarded, world-reknowned tropical disease expert who is supposed to be one of the foremost diagnosticiations in "rare diseases"....I have no idea if you would need such an expert, but I'm happy to pass his name onto you....
Take Care
Posted by JamesNYC (Member # 15793) on :
MB,
That was the most amazingly complete response to all the posters to this topic!! It must have taken HOURS! LOL Great Job!
I had chronic UTIs for several months after I had my rash from my first infection. It was a "non-specific" type. I would be get 2 weeks of Doxy, the UTI would go away, only to come back. I'd be retreated, etc. Other people have reported UTIs that wouldn't go away too. I was just wondering if you had that sx too.
Hang in there, we're pulling for you.
James
Posted by springshowers (Member # 19863) on :
MB I may not have read every detail of our post. But what IV antibiotics have you done? I think I read Rochephin. But anything else?
I am curious if maybe you have exhausted all of that route. I am doing IV antibiotics for the first time and Its too soon to give a result on it but I am feeling like I respond much better to the IV than the Oral and can tolerate much higher dosing by far too.
Posted by sixgoofykids (Member # 11141) on :
I Metallic. I read your first post, but not all the others .. just saying in case my post doesn't follow with the thread.
I found that abx got me to a certain level of functionality. That was okay, especially since my functionality on them was a bit higher than yours.
However, I wanted more, so I was open to trying something different. You can't keep trying the same thing and expect different results.
The two biggies for me were Bionic 880 therapy and KPU protocol. Bionic 880 has kept my infections down for 10 months now. KPU helped with the remaining symptoms due to its influence on detoxification I believe. Given your CNS symptoms, I would look into it.
Currently, I take one Depyrrol in the morning, thyroid, iron, mag, and oil of evening primrose. I take an herb to help with sleep. I photon once per month. That's all I do.
I add in detox once in a while. Currently I'm doing the Dr. Natura cleanse. Amazing. I've also done several rounds of Humaworm. Both help, as did Hulda Clark's liver cleanse (I did five before it was "clean").
Now I'm 100% and still improving ... what's improving is my sleep is getting deeper, I started dreaming again, and I fall asleep earlier and wake up earlier. That's a sign that the adrenals are healing.
Also another thing that's improving is my muscles. I had some atrophy on my left side (I am left handed) and am working on that with Pilates. I also have a chiropractor .... that is helping because I was all out of whack having one side stronger than the other.
So, at this point I'm dealing with the damage done from the disease and not the disease itself.
I have all the Crohn's symptoms, but was unwilling to see another doctor so am not formally diagnosed. I eat lots of fermented foods - kefir, kombucha, and raw sauerkraut. As long as I eat one of those with each meal, no GI trouble at all.
It took some time after returning from Germany to get to where I am, that wasn't the end of the road, but I trusted the photons and did not add in a bunch of other stuff aside from detox and KPU.
Again, this is what worked for me. Take from it what you feel will help you. If you've done abx for 7 years and are not reaching health, I would drop it for a time and try something different be it rife, photons, or whatever. You can always go back to abx.
Posted by sammy1 (Member # 12754) on :
Abx imho won't cure you. Try salt c and rife. It has saved my life.
Posted by ticked-offinNc (Member # 15420) on :
Lordy MBlue,
Seems like you have improved, pets and furniture huh?
I am really sorry you feel stuck, I wish I had an answer for you. But I dont think I have ever been at your level my whole life.
You are intellegent, have attention span, organizational skills, respect and kindness toward others.
I cant imagine the things you will accomplish and do when you do get better.
You have already left your mark in the world, and you are still young.
Ever think of seeing another LLMD for just a consult?
Just look at all thr responses you get when you post, people here really appreciate who you already are.
Posted by WildCondor (Member # 434) on :
Metallic,
Have you ever done larger doses of Flagyl? I mean something like 750 mg 4x per day 4 days on, 3 days off, then pulse something like Bicillin 1.2 MU 3-4x per week along with 2,000 mg Biaxin with it. I would do all of those plus get in a monoplace Hyperbaric chamber for 30 dives (to start) if you can afford it. That protocol blasted my Lyme nice and hard and I never relapsed afterward. I would give Levaquin or Cipro in higher doses than you initially took another chance too, and combine them with Biaxin possibly. Hang in there...something will work. Posted by Robin123 (Member # 9197) on :
quote:Originally posted by lou: Robin, glad you found something that worked. That is not a very big dose. Is it oral? But a lot of us may have other unidentified bugs that clindamycin may be hitting. The fact that you don't know about them does not mean they aren't there! Treatment seems to be a trial and error thing so often, because we don't know entirely what we are dealing with.
To answer you, Lou, yes, it's oral clindamycin. 150mg 2x/day now. 4x/day when I started.
And yes, one researcher told me it could also be hitting mycoplasma.
I don't think I have any other co's, so don't know what else clinda would be hitting. It's my Lyme symptoms that it has been treating - fibro pain to zero, joint pain down I'd say about 80%.
Now back to Mike: I like sixgoofy's suggestions to look more broadly. We have reports, for example, from Lyme patients going to India for stem cell injections and they are just about 95% better.
So I encourage you to take a look at all treatments people are trying, not just abx.
Posted by CD57 (Member # 11749) on :
Metallic I am soooo impressed with your record keeping. You have one of the best LLMDs in the county. What does he say about all of this?
I don't have strong herxes to meds either, and while I am better than when I started out 3 yrs ago, in some ways I am much worse (CNS/psych). I now have permanent damage acquired ON treatment (go figure). My LLMD has suggested that my immunological impairment is a reason for my lack of strong herxing and thus improvement. I don't know what I have to do to boost this, but I will do anything. I am trying to look into IVIG but don't know if that will help. I reintroduced LDN after quitting it so we will see if that does anything.
What does your gut tell you is your biggest issue?
Posted by coltman (Member # 21272) on :
Have you tried immune modulation?- this is very poorly researched subject in US , but very interesting one and unlike alternative treatments it has plenty of clinical research(done outside US ) backing it
LDN is a first thing you can try -easily accessible in US , it is also interesting that it uses different mechanism than other immune modulators -it acts on opiod receptors, it seems help MS people
Then there is cycloferon, polyoxidoniy ,licopid (and many others but those are most mainstream -available trough some overseas pharmacies) They have very safe profile and are used for in wide range of applications ( HIV, TB, hepatitis, other chronic and sometimes acute infections of bacterial and viral origin)
I do suggest to stay away from IVIG and interferons though as unlike those listed above they directly introduce exogenous cytokines into the system, this approach has has high probability of negative side effects. The drugs listed above act on signaling pathways - so cytokines are produced by your own body .
Posted by METALLlC BLUE (Member # 6628) on :
quote:
Bugg: I am so sorry that you have struggled so profoundly for so long. I wish I had the "magic answer" for you.
If you should ever want it, I can PM you the name of a highly-regarded, world-reknowned tropical disease expert who is supposed to be one of the foremost diagnosticiations in "rare diseases"....I have no idea if you would need such an expert, but I'm happy to pass his name onto you....
Sure, yes that would be helpful. Any information is useful.
quote: JamesNYC MB, That was the most amazingly complete response to all the posters to this topic!! It must have taken HOURS! LOL Great Job!
I had chronic UTIs for several months after I had my rash from my first infection. It was a "non-specific" type. I would be get 2 weeks of Doxy, the UTI would go away, only to come back. I'd be retreated, etc. Other people have reported UTIs that wouldn't go away too. I was just wondering if you had that sx too.
Hang in there, we're pulling for you.
I remember reading about quite a few people who suffered from the UTI issue as well, so clearly immunocompromised patients are -- as we already knew -- at risk for other infectious diseases that they'd be less resistent too. Interestingly though, many of us also notice we're more resistent to some infections, such as the cold or flu. While of course we still can get these while sick, it's been a trend I've noticed in my own life. Whenever my health improved, I suddenly had colds occasionally and even the flu. Could be anything, maybe it's nothing -- just an observation.
And thank you, I am just really busting my balls here doing everything, but it takes such a long time to explore ever option. Not to mention many options require extensive periods of time just to complete "one" thing. If it works, great, but in my case nothing has, so that's why I got frustrated and asked for help.
quote: springshowers MB I may not have read every detail of our post. But what IV antibiotics have you done? I think I read Rochephin. But anything else?
I am curious if maybe you have exhausted all of that route. I am doing IV antibiotics for the first time and Its too soon to give a result on it but I am feeling like I respond much better to the IV than the Oral and can tolerate much higher dosing by far too.
I did IV Vancomycin for 4 1/2 weeks or so, wit Oral Penicillin at the time. I haven't exhausted the IV route, so I'm wondering what you and others have for options. I've gotten some good feed back in the thread but I'm sure there is a lot more. IV is in my future, I'm pretty certain of that. I just want to make sure when I commit to it (Given I had sepsis before), I want to be prepared and safer. I didn't "know" it was sepsis until it nearly killed me, my specialist in Boston just brushed it off as part of a "Herxheimer" response. I told him that severe chills and high fevers didn't seem like a herxheimer to me. He told me to have the line pulled and that was when I ended up in the emergency room just a day later. So if I'm reluctant, seeing the white light sort of dose that to a person I'd think. I will do it though, because I know it's the logical next step, but I want to make sure my ducks are in a row and that I'm not missing treatment for other infections before I step into treating Lyme at full speed. The Babesia and Bartonella absolutely must be addressed more fully in my opinion. If I improve after addressing those, I'll know I can move onto the IV, but if something else is lingering unchecked, such as another parasite (besides babesia) or .....perhaps something else, I have to figure it out.
quote: sixgoofykids I Metallic. I read your first post, but not all the others .. just saying in case my post doesn't follow with the thread.
I found that abx got me to a certain level of functionality. That was okay, especially since my functionality on them was a bit higher than yours.
However, I wanted more, so I was open to trying something different. You can't keep trying the same thing and expect different results.
Certainly, that's what we've talked about through this thread. Systematically exploring all the options until we move to the next stages. You and I shared the same doctor (I am not aware if you still see him), and so we've done things in a consistent pattern and constantly strived to move into new areas. Currently we're seeing if a drug called VFEND might work. I'm on it now, -- my second day -- and we're hoping to see results within two weeks. It's an anti-fungal drug but also, possibly, may have strong effects on Lyme and other bacterial infections. It's a weak study, but the study done on Diflucan was the "possibility" factor that led me to convince him to give it a shot. To do it meant I'd have to stop all treatment which is exactly the point I was at. I needed a break. I've been going full steam for 7 years and my mind is burned out. A lot of factors have been going on in my life right now that have discouraged me and so I really needed to pull myself together gradually and come here to find out "all" the things that are available. My LLMD is well versed in a lot of stuff, but once he starts hitting a wall and gets stuck, he'll try to experiment. Experimenting means you're all alone really.
quote: sixgoofykidsThe two biggies for me were Bionic 880 therapy and KPU protocol. Bionic 880 has kept my infections down for 10 months now. KPU helped with the remaining symptoms due to its influence on detoxification I believe. Given your CNS symptoms, I would look into it.
It's been covered. It's a possibility down the road but cost at present is not feasible. However, since Erica lives just south, I will perhaps go if other options do not yield anything worthwhile. I'm glad you've continued to feel better than you were.
quote: sixgoofykidsCurrently, I take one Depyrrol in the morning, thyroid, iron, mag, and oil of evening primrose. I take an herb to help with sleep. I photon once per month. That's all I do.
Pretty basic routine, I'm sure you're happier not being pumped up on drugs.
quote: sixgoofykidsI add in detox once in a while. Currently I'm doing the Dr. Natura cleanse. Amazing. I've also done several rounds of Humaworm. Both help, as did Hulda Clark's liver cleanse (I did five before it was "clean").
Now I'm 100% and still improving ... what's improving is my sleep is getting deeper, I started dreaming again, and I fall asleep earlier and wake up earlier. That's a sign that the adrenals are healing.
Humaworm? Is that available by prescription or another way? I know about Dr. Hulda Clark's routines to some extent, and of course keep that in the back of my head for down the road. Dr. Natura cleanse, What is that?
quote: sixgoofykidsAlso another thing that's improving is my muscles. I had some atrophy on my left side (I am left handed) and am working on that with Pilates. I also have a chiropractor .... that is helping because I was all out of whack having one side stronger than the other. So, at this point I'm dealing with the damage done from the disease and not the disease itself.
I have all the Crohn's symptoms, but was unwilling to see another doctor so am not formally diagnosed. I eat lots of fermented foods - kefir, kombucha, and raw sauerkraut. As long as I eat one of those with each meal, no GI trouble at all.
It took some time after returning from Germany to get to where I am, that wasn't the end of the road, but I trusted the photons and did not add in a bunch of other stuff aside from detox and KPU.
Again, this is what worked for me. Take from it what you feel will help you. If you've done abx for 7 years and are not reaching health, I would drop it for a time and try something different be it rife, photons, or whatever. You can always go back to abx.
sixgoofykids.blogspot.com
Pilates and meditation were recommended. I find riding the bike for now has been useful and I do very minor meditation. I did see a Chiropractor, but the issues I was seeing him for were regarding a flat foot on my left side. In that respect I was out of whack as well, and it was causing knee problems. The issue in the end was really just getting someone to create an appropriate support. No one ever could. I went through many expensive pairs of custom pieces and finally decided to start making my own out of over the counter ones. I take them, they tape slices of paper to areas until it feels right. It takes hours and God I hate it, but it's helped more than all the thousands of dollars spent on people who "specialize" and still couldn't get it right.
I'm also diagnosed with Crohn's Disease. I'm absolutely certain that it's the result of the illness as a whole and not a separate entity. It responds well when all the other symptoms do as well. Tetracycline therapy has significantly improved it over the years. I'm glad you're doing ok in that respect because it can be painful and frustrating for many.
Erica kept me up to date on your blog regarding your trip and the processes you went through. Some of your details here though may be useful to me, so I'm taking note.
I appreciate your taking the time to offer this information.
quote: sammy1 Abx imho won't cure you. Try salt c and rife. It has saved my life.
Yeah we've covered that in the thread. I'm very glad to hear it's helped you. It's in my notes.
quote: ticked-offinNc Lordy MBlue,
Seems like you have improved, pets and furniture huh? [Smile]
I have, in minor ways -- at least I call them minor. It took me a year debating with a therapist whether I'd get a cat. I mean seriously, who does that? Oh...Lyme patients, that's who. Such tiny choices (at least to me) make such a big impact and are hard to adapt to and tolerate. I'm working hard though.
quote: ticked-offinNcI am really sorry you feel stuck, I wish I had an answer for you. But I dont think I have ever been at your level my whole life.
You are intellegent, have attention span, organizational skills, respect and kindness toward others.
I cant imagine the things you will accomplish and do when you do get better.
You have already left your mark in the world, and you are still young.
Thank you for the kindness. I just really am so tired of this process. I mean it's one thing to be stuck for a month, a year, or even 5, but almost an entire lifetime? What a curse. One thing I will never admit is that this disease made me a better person. You'll never hear me say that. I've destroyed so many relationships and hurt so many people. You know why? Because my roommate (Lyme) takes control of my mind from time to time (Less so with antibiotic therapy over the years), but enough so that the depression, rage, mania, and incredibly disrespectful behavior and comments made me a massive burden to those who matter most. Thankfully, as I improved in some areas (I have an awful long way to go cognitively and mood wise -- medications are what keep me somewhat (if that) stable. I just want to be free. I feel like a prisoner who was sentenced for a crime he didn't commit, and now he must sit in his cell with all his law books in order to solve an injustice. But sadly, with Lyme there is no one to blame. With the co-infections and other comorbid states -- I can't plead my case and somehow overturn the "wrong" that's been done -- because there was no wrong. It was just...events that I happen to be there for -- like some of you. In other cases though, a doctor missing a rash or denying treatment is one thing -- but I'd been sick long long before that. Ignorance, that's all I plead and trust me, if you ever plead ignorance in a court of law, they'll say "Just because you didn't know, doesn't mean you're not still subject to the consequences." A police officer told me that once. Oh how true. So that's a little venting!
quote: ticked-offinNcEver think of seeing another LLMD for just a consult?
I've seen three. Of course the first one was highly conservative. The second would have missed a variety of co-infections because she said (and I quote) "I don't run testing. Why would I test you for something I know you already have?" My response: "Uh, but what about the things you don't know I have that may create a more complicated picture?" She agreed to run testing but would not sign off on the labs I chose. Instead she used Quest. She said the treatment plan was simple. 90 days of Ceftin at a specific dose. If it didn't work, another 90 days at double the dose. If that didn't work, 90 days and again double that dose. If in the end none of that works, IV Rochepin. That was what she offered. She told me to change my diet, reduce my stress, and explained a few supplements to me. It just wasn't sensible, so I stayed with the first guy until I could get up the nerve and finances to see someone much more experienced. When I finally did, it costed me thousands and thousands of dollars. This illness - since I originally fell ill as a child -- has cost well over 5 million dollars. Fortunately I've only paid at best 50-75K out of pocket. Sick and broke! The typical story.
In the end, I may have to see another specialist, but I'll cross that bridge when I get there.
quote: ticked-offinNcJust look at all thr responses you get when you post, people here really appreciate who you already are.
And I seriously am grateful and appreciate all the information everyone has given me. Thank so much.
quote: WildCondor Metallic,
Have you ever done larger doses of Flagyl? I mean something like 750 mg 4x per day 4 days on, 3 days off, then pulse something like Bicillin 1.2 MU 3-4x per week along with 2,000 mg Biaxin with it.
I haven't. It's an idea though. I've used all those meds at lower doses of course and say no results, but a high dose could make a difference I suppose. I'll bring it up at my appointment.
quote: WildCondorI would do all of those plus get in a monoplace Hyperbaric chamber for 30 dives (to start) if you can afford it.
That was brought up by OXbabe as well, but it's just not feasible financially. My monthly limit financially -- with stretching myself to the absolute limit is $500. I will -- just in case I can find a way -- remember this though, because I'm well aware it could work.
quote: WildCondorThat protocol blasted my Lyme nice and hard and I never relapsed afterward. I would give Levaquin or Cipro in higher doses than you initially took another chance too, and combine them with Biaxin possibly. Hang in there...something will work. [Smile]
The Cipro/Levaquin idea with high dose Biaxen/Plaquenil are a potential idea to try since we did not do high doses. At most I used 500mg of Levaquin orally with some IV Levaquin for one a few days. Biaxen never went above 1,500mg per day and Plaquenil always stayed at 400mg total per day. So, I'll bring these up too. I've brought up the Levaquin, but there is a bit of concern there even doing it at the regular dose.
I came up with an idea -- or remembered should I say -- that dosing really "dose" have a lot to do with how a medication does or doesn't work and this brought me to the Cycline issue. What if the reason Minocycline, Doxycycline didn't work was because the actual amount of medication (even with high absorbtion) wasn't enough compared to the Tetracycline, which I was taking at 1,500mg and 2,000mg at one point? It's possible that the theory of lower dosing doesn't hold true in all cases? Just a hypothesis with no real value, but it was on my mind.
quote: Robin123
To answer you, Lou, yes, it's oral clindamycin. 150mg 2x/day now. 4x/day when I started.
And yes, one researcher told me it could also be hitting mycoplasma.
I don't think I have any other co's, so don't know what else clinda would be hitting. It's my Lyme symptoms that it has been treating - fibro pain to zero, joint pain down I'd say about 80%.
Remember, I am also diagnosed with Mycoplasma, but it's the Pneumoniae type.
quote: Now back to Mike: I like sixgoofy's suggestions to look more broadly. We have reports, for example, from Lyme patients going to India for stem cell injections and they are just about 95% better.
So I encourage you to take a look at all treatments people are trying, not just abx.
I'm keeping an open mind and piecing together what I think is probably the next best possible option. So yeah I'll certainly look into it all.
quote: CD57
[quote]Metallic I am soooo impressed with your record keeping. You have one of the best LLMDs in the county. What does he say about all of this?
He said, I'm sorry you feel so discouraged but we're doing what we can, and when we start running out of things, we've gotta take the next logical step, and that's preparing your body for IV antibiotic therapy. I told him I felt that we should explore some other lower risk treatments first, and I mentioned a few. He shrugged and said that when I was ready and didn't feel so burned out he'd try. I told him to consider the VFEND during this break period and he shrugged and said "Ok, I'll write you a script for 2 weeks, but that's it. If it's going to work it'll start in that period and if it shows results will continue it." I then pleaded with him for a prescription of Tetracycline. He absolutely hates Tetracycline. He favors Mino and Doxry/Doxycycline. However, Tetracycline is the only one that ever made a dent. I didn't have to plead, but I wanted his consent so I'd feel I was at least following orders. I could easily have gotten the prescription another way. I'm blessed with a Primary who was open to the research I presented, UOS, as well as my systematic method of trying to figure out which drugs are doing what. That pleased her, so she's written everything for me instead of having my LLMD do it Living in MA, I can't get coverage for NY prescriptions, so it was perfect for me.
One other thing that bothers me is the fact that he "Is" one of the best, if not the best. I'm aware of a few others who match his skill but I'd really hate to waste part of my 500$ spending limit just making a flight!
quote: CD57I don't have strong herxes to meds either, and while I am better than when I started out 3 yrs ago, in some ways I am much worse (CNS/psych). I now have permanent damage acquired ON treatment (go figure). My LLMD has suggested that my immunological impairment is a reason for my lack of strong herxing and thus improvement. I don't know what I have to do to boost this, but I will do anything. I am trying to look into IVIG but don't know if that will help. I reintroduced LDN after quitting it so we will see if that does anything.
What does your gut tell you is your biggest issue?
Immunological impairment could mean you might need a Lyme Literate Immunologist. However, before that I'd try Transfer Factor Plus, with continual high dose antibiotics (Preferably those known to "not" affect white blood cells or do anything else to the immune system.). Immune stimulation and modulation comes in a variety of forms, but light to moderate exercise for 20-30 mins can help increase immune response when combined with high dose antibiotics, LDN, Transfer Factor. The exercise part works for me. The Transfer Factor would have likely made a massive impact had I known at the time that I needed high dose antibiotics in combination. I felt "really really" well on Transfer Factor Plus for about one week, but this was before any other treatment. The progress disappeared though. I've also concluded based on my experience that Transfer Factor Plus should not be taken daily. It should be pulsed. Perhaps 5 days on, 5 days off etc. The dose of TF should also be very high, unlike what the package says. It should be at least 9 pills per day taken three times apart. Unfortunately the product is expensive, but with pulsing it, costs would reduce substantially. I think I may return to the TF again as another possibility when I get back on the antibiotics. Cost is about $50 per bottle with 60 capsules. Divide 60 by 9 and it'll only last about 6 days per bottle. So per month, it's about $200 I would think. My concern is some people don't respond though, so it's a risk.
My symptoms do decrease during exercise, which leads me to believe that endorphins combined with anti-inflammatory actions (modulation) help the immune system. IVIG could very well be helpful to you if it really is your immune system. You may need testing further to see if it's necessary though because there are risks of reaction. It's worth investigating though. The LDN was a good idea. My LLMD says combining LDN with a product called "Pekana" which is a Homeopatic treatment helps a lot of his patients. Combined they work much better than either alone he said.
I think the biggest issue is probably Lyme Disease combined with Bartonella. However, since treating the Babesia has helped so immensely, I'm thinking it may be that I'm not progressing because of the Babesia. So, knocking one infection down at a time or together in an order makes sense to me. My immune system is normal aside from dysregulation with inflammation, but the inflammation isn't "insane." It's more along the lines of a low level inflammation that creates a lot of these symptoms, and if the proper infections are targetted, the triggers removal will decrease the inflammation.
[ 11-22-2009, 01:13 PM: Message edited by: METALLlC BLUE ]
Posted by merrygirl (Member # 12041) on :
I didnt read all the resposes so sorry if i missed something.
maybe its time to think outside the lyme and co's box.
maybe thats not whats bothering you anymore.
Posted by METALLlC BLUE (Member # 6628) on :
quote: ColtmanHave you tried immune modulation?- this is very poorly researched subject in US , but very interesting one and unlike alternative treatments it has plenty of clinical research(done outside US ) backing it
LDN is a first thing you can try -easily accessible in US , it is also interesting that it uses different mechanism than other immune modulators -it acts on opiod receptors, it seems help MS people
I tried the LDN but had awful side effects. I may return to it in the future. It's a possibility.
quote: coltman Then there is cycloferon, polyoxidoniy ,licopid (and many others but those are most mainstream -available trough some overseas pharmacies) They have very safe profile and are used for in wide range of applications ( HIV, TB, hepatitis, other chronic and sometimes acute infections of bacterial and viral origin)
Interesting, I'd never heard of those drugs. Thanks for mentioning them.
quote: I do suggest to stay away from IVIG and interferons though as unlike those listed above they directly introduce exogenous cytokines into the system, this approach has has high probability of negative side effects. The drugs listed above act on signaling pathways - so cytokines are produced by your own body .
Yeah, I mentioned the IVIG thing just above your post to CD57. Risks, but... perhaps she can benefit from your post as well. She's doing the LDN now, and I offered her a few ideas. I'm not planning to do IVIG as I don't think my problem requires that, but I do think immune modulation could help my symptoms. It's not the "increase" part I need so much as modulating and balancing inflammatory responses vs infection fight and other efforts of the immune system. Then again, I heal slowly too, but I think that's also caused by low level inflammation through the body.
Posted by METALLlC BLUE (Member # 6628) on :
quote: MerrygirlI didnt read all the resposes so sorry if i missed something.
maybe its time to think outside the lyme and co's box.
maybe thats not whats bothering you anymore.
I'm confident it is a big part of the problem still, given I'm responding to the Malarone and the Tetracycline still, as well as a partial response to Doxycycline, a "minor/moderate" herxheimer reaction to Bicillin, and of course the enormous herxheimer reaction that takes place only 5 days into treatment with the Bactrim.
It's highly unlikely the Malarone is reducing symptoms by any other mechanism than killing something. The Tetracycline and Doxycycline are subject to all the usual debates about pain receptors, reducing inflammation, as well as their antibacterial properties. I can say that both Doxy and Tetra caused strong (and Tetra still dose) herxheimer reactions about 1 1/2 weeks after starting, and then a decrease in symptoms takes place at 12-14 days. The Bactrim could have been causing side effects leading to such a powerful response that I attribute as a Herxheimer reaction. I could be wrong though, since it's subjective -- but it sure did feel like a Herxheimer. All the cognitive, psychiatric, joint aches, digestive bloating, palpitations etc. All potential side effects, but you don't usually start improving in the symptoms you started with after only 7-9 days.
I mentioned earlier however that I can't take Bactrim since I had red-man syndrome, and Dorxy doesn't make sense to try right now since I stopped responding within one month of use.
I'm confident we're dealing primarily with infectious diseases, especially with all my positive tests, however -- that doesn't mean I'll avoid going outside of this box if I don't find progress with any known options. I just don't think right now is the time to move away from them.
Thanks for reading my post and offering your thoughts. It helps me to clarify what I really think I need to focus on. If the focus turns into a dead end, then I'll change the lens.
Posted by coltman (Member # 21272) on :
quote:Originally posted by METALLlC BLUE: I'm a perfect example of Chronic Persistent Lyme inspite of "more than adequate" antibiotics.
It wasn't until 2009 though that I explored a lot of complex protocols. No changes took place, even with those.
You seem tried lots of stuff but its really hard to tell whether it was combined or not .It is strange you want get back on tetracyclines (and not doxy or mino) as tetracycline is practically obsolete -it has worse bio-availability , worse action, worse spectrum , worse side effects
There is also a lot of clutter meds listed (psych meds pain meds ,etc) which do blurry the picture
p.s. Hmm I had impression Dr.H is fairly aggressive (if it same Dr H I think of) , I would think he would use combo abx
Posted by JamesNYC (Member # 15793) on :
MB said:
quote:He said, I'm sorry you feel so discouraged but we're doing what we can, and when we start running out of things, we've gotta take the next logical step, and that's preparing your body for IV antibiotic therapy. I told him I felt that we should explore some other lower risk treatments first, and I mentioned a few.
I don't see how you have any other serious options left. Nothing has worked.
How come you haven't been on long term Rocephin like so many others? (If you already addressed this, and I missed it, my apologies).
But my question from way up the thread was, how do you know if you're getting a response when you have SO many bacteria, causing SO many sx? You could knock out, say, RMSF, and still feel awful because of the others.
My guess would be that your immune system is very compromised. Abx work by keeping the bacteria from replicating so that your immune system can kill them off. But obviously if your immune system isn't up to the task, the bacteria live on. Or are killed very, very slowly. (that would explain your lack of response in a "normal" time frame).
I don't know much about the bactericidal abx, but I would think that even they rely on a good functioning immune system.
As I go through this journey, I find that Babs is a much bigger problem than is usually thought. But the babs should be the easiest to directly treat since it's a different bug and different kind of drug.
Since it's blood borne, it can be attacked much easier than Lyme which hides in the tissues. But 4 months of Mepron isn't necessarily enough.
The anemic condition babs causes of too few usable RBCs must make every kind of abx less effective, as well as suppressing the immune system. It will also make you feel fatigued and make any kind of physical effort harder.
Dr H should be a leading LLMD in the field. Does he consult with other LLMDs about your case? You are very unusual in that you have proven multiple infections.
You really should be a published case history of how the IDSA protocols do not work. I mean that in all seriousness. I wonder how the IDSA would characterize you. All in your head?
Have you tried living someplace else for a few weeks just to eliminate environmental factors? Maybe some of your pain is from living in Springfield!
James
Posted by METALLlC BLUE (Member # 6628) on :
quote: coltman
You seem tried lots of stuff but its really hard to tell whether it was combined or not .It is strange you want get back on tetracyclines (and not doxy or mino) as tetracycline is practically obsolete -it has worse bio-availability , worse action, worse spectrum , worse side effects
Yeah, My LLMD prescribed Mino and Dorxy for quite awhile. Mino showed no results and Dorxy showed results in the exact time frame that Tetracycline dose -- including the Herxheimer reaction. The problem is, it stopped working quickly. I've done probably 8-10 cycles of 6-8 months each, of Tetracycline and it's never stopped working until it wears out at the 6-8th month marker. When it stops, I start back up two months later and it works again. The problem is, it only raises my function by about 10% at best. 10% is better than nothing right now and I need some relief.
quote: coltman There is also a lot of clutter meds listed (psych meds pain meds ,etc) which do blurry the picture
p.s. Hmm I had impression your LLMD is fairly aggressive (if it same LLMD I think of) , I would think he would use combo abx.
Yes, it's the same doctor you're thinking of. Highly aggressive and we've done multiple combinations. That's why I'm concerned.
quote: James I don't see how you have any other serious options left. Nothing has worked.
A lot of options were given in the the thread, so I feel more encouraged by that.
quote: JamesHow come you haven't been on long term Rocephin like so many others? (If you already addressed this, and I missed it, my apologies).
I covered it earlier. My prior LLMD didn't prescribe IV for 99% of his patients (His words), but in my case I convinced him 3 years into treatment to go with the IV. I didn't know much about Lyme back then. I didn't know I had co-infections either. He gave me IV Vanco. I told him it seemed strange to do that and not IV R. He said "IV V" is better. I accepted his statement.
quote: JamesBut my question from way up the thread was, how do you know if you're getting a response when you have SO many bacteria, causing SO many sx? You could knock out, say, RMSF, and still feel awful because of the others.
We're confident the RMSF is gone. It's of course obvious that multiple infections can cause multiple symptoms and he and I discussed that at length. I noted, based on other patient and LLMD reports, that Babesia causes "exaggerated" symptoms in the form of immunosuppression, breathing difficulty, higher fevers, and night sweats." When we put medications together, we tried to carefully do them one at a time and to use specific things for specific diagnosis. For example the Malarone. When Night Sweats and Breathing improved, but nothing else (and it only improved when Malarone was added) we can presume it's Babesia or some various parasite. Bartonella tends to cause more exaggerated symptoms of the psychiatric and G.I. system, including bloated belly, accumulation of fat in uneven distribution that doesn't respond to exercise or dietary changes, as well as insomnia. Many of these symptoms easily cross over to other infectious diseases (So do the Babesia symptoms). We can't confirm anything definitively.
quote: JamesAs I go through this journey, I find that Babs is a much bigger problem than is usually thought. But the babs should be the easiest to directly treat since it's a different bug and different kind of drug.
Since it's blood borne, it can be attacked much easier than Lyme which hides in the tissues.
The anemic condition babs causes of too few usable RBCs must make every kind of abx less effective, as well as suppressing the immune system. It will also make you feel fatigued and make any kind of physical effort harder.
I'd had anemia too in the past, so I think we can presume that adds a little more circumstantial evidence to the diagnosis. There is no gaurantee that any assumption we make that we'll target exactly that alone.
quote: JamesYour LLMD should be a leading LLMD in the field. Does he consult with other LLMDs about your case? You are very unusual in that you have proven multiple infections.
Sadly my case is actually quite usual given the context. Prior steroid use, allergies, multiple misdiagnosis etc. I'm sure he'll consult if he finds it necessary. He does refer patients for certain issues when necessary. If I have to see another LLMD at any point, I'd do that too.
quote: JamesYou really should be a published case history of how the IDSA protocols do not work. I mean that in all seriousness. I wonder how the IDSA would characterize you. All in your head?
They don't care. Every argument I've made to them (and I have) they've said:
"Lab Lacks credibility, must be false positive, lab error, not Lyme since you didn't recover with adequate antibiotics. Test can remain positive even post-infection, etc. Actually their list of rebuttals are so long and so convoluted that no matter which way you go and no matter how much proof, they'll find a way to deny it as they have thus far in the general community.
For those rare rare cases of ongoing infection inspite of antibiotics, they call it "refractory" Lyme Disease and say it's extremely rare. What confuses me is that if Chronic Lyme doesn't exist, then why do they state that refractory Lyme exists even in "rare" cases? The IDSA has never made sense, nor answered these questions with satisfactory answers.
I showed all my studies on persistent infection (I've got over one hundred -- which equals about 1,000 pages), and they say "They're not double blind placebo controlled." So they dismiss it as though it's meaningless. That's absurd.
quote:Have you tried living someplace else for a few weeks just to eliminate environmental factors? Maybe some of your pain is from living in Springfield! [Wink]
James
That's amusing James. I do in-fact think the negativity of the city isn't helpful, but as far as it physically causing illness because of pollution or other chemicals, it doesn't make a difference where I go. I've gone away for months at a time to different places, including to Italy for 3 months. Nothing changed.
[ 11-22-2009, 01:14 PM: Message edited by: METALLlC BLUE ]
Posted by lymielauren28 (Member # 13742) on :
Hey Metallic, I'm so sorry for all the suffering you've endured. That you're still sane is a testament to your incredible character.
Knowing what I know now, my advice would be to Rife. It's incredible and has allowed me to discontinue all pharmacuetical meds. Even after I quit abx I was still treating babs with Mepron - when my insurance ran out I freaked - no way could I afford 2 bottles of Mepron every month and I was still really sick with babs symptoms.
I don't know why it took me so long to try my machine on my babesia infection, and I'm sorry it did. Just like Lyme, my machine has blasted my babs into oblivion. It makes me sick when I think of the thousands of dollars I spent just on antimalarials alone - and all that time all I really needed was my $3oo Dan Tracy.
One of the other benefits of Rifing is that I'm not in a constant herx like I was with abx - I have more control. I usually Rife on Friday morning and herx Saturday and Sunday. I may still feel a little rough by Monday but I'm functional. The rest of the week is gravy.
All the excuses you're giving for not using your machine are the same ones that I used. I say quit with all that and give it a whirl - I don't think you'll be sorry.
Best of luck to you with whatever road you choose to take and I truly hope you get much better soon.
Posted by D Bergy (Member # 9984) on :
lymielauren28, have you found that Babesia is easily knocked down using frequencies?
I have treated this co-infection early on using frequencies and it all but disappeared for many months.I t may even be totally gone.
I am asking because it almost seemed to be too easy to knock out, and since I basically hit it a couple times and it was gone, I wonder if this is common or if it was some huge coincidence.
I think metallic blue is trying to limit the different approaches in an organized way, so effectiveness can be determined. A good idea in general. It gets confusing piling one thing on top of another.
At least that is how it appears to me.
Interesting reading. Lots of experience being imparted in this thread.
Dan
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by METALLlC BLUE: [QB] Certainly, that's what we've talked about through this thread. Systematically exploring all the options until we move to the next stages. You and I shared the same doctor (I am not aware if you still see him), and so we've done things in a consistent pattern and constantly strived to move into new areas. Currently we're seeing if a drug called VFEND might work. I'm on it now, -- my second day -- and we're hoping to see results within two weeks. It's an anti-fungal drug but also, possibly, may have strong effects on Lyme and other bacterial infections. It's a weak study, but the study done on Diflucan was the "possibility" factor that led me to convince Dr. H to give it a shot. To do it meant I'd have to stop all treatment which is exactly the point I was at. I needed a break. I've been going full steam for 7 years and my mind is burned out. A lot of factors have been going on in my life right now that have discouraged me and so I really needed to pull myself together gradually and come here to find out "all" the things that are available. You know Dr. H is well versed in a lot of stuff, but once he starts hitting a wall and gets stuck, he'll try to experiment. Experimenting means you're all alone really.
I still have him look at my blood work for thyroid meds. I've cut down a lot on thyroid meds, but still take them. He is open to trying other things and I think it's good to take the risk. If it's not working, you will know.
quote: I'm glad you've continued to feel better than you were.
It's nice to be living life again and not to have to think about or deal with Lyme.
quote: Pretty basic routine, I'm sure you're happier not being pumped up on drugs.
For sure! These are all supps, too, nothing is for infections. I still use the Bionic just to be sure it doesn't all come back ... kind of a safety net for me.
quote: Humaworm? Is that available by prescription or another way? I know about Dr. Hulda Clark's routines to some extent, and of course keep that in the back of my head for down the road. Dr. Natura cleanse, What is that?
Humaworm is available at www.humaworm.com . Parasites were a big deal for me. I really shot forward in my treatment back when I was on abx when I treated parasites and bartonella. Dr. H and I didn't know which one helped the most.
Dr. Natura is a cleanse kit that you buy off the internet. It has some herbs you take in the morning. Then a fiber blend. Then a tea you drink at night. Very cleansing. Good herbs.
quote:Pilates and meditation were recommended. I find riding the bike for now has been useful and I do very minor meditation. I did see a Chiropractor, but the issues I was seeing him for were regarding a flat foot on my left side. In that respect I was out of whack as well, and it was causing knee problems. The issue in the end was really just getting someone to create an appropriate support. No one ever could. I went through many expensive pairs of custom pieces and finally decided to start making my own out of over the counter ones. I take them, they tape slices of paper to areas until it feels right. It takes hours and God I hate it, but it's helped more than all the thousands of dollars spent on people who "specialize" and still couldn't get it right.
I'm also diagnosed with Crohn's Disease. I'm absolutely certain that it's the result of the illness as a whole and not a separate entity. It responds well when all the other symptoms do as well. Tetracycline therapy has significantly improved it over the years. I'm glad you're doing ok in that respect because it can be painful and frustrating for many.
Erica kept me up to date on your blog regarding your trip and the processes you went through. Some of your details here though may be useful to me, so I'm taking note.
I appreciate your taking the time to offer this information.
I'm happy to.
A good pilates instructor can help you build the muscles properly to help with the foot problem. Not just any old mat class, but a teacher who has experience and training to work on the reformer. Not saying it will fix it 100% or quickly, just that it will help you to build the muscles up how they're supposed to be. Chances are that you stand on the inside of your foot. If you stand barefoot you will probably notice that you don't stand evenly on the ball of your foot ... you most likely roll to the big toe side. Try to distribute the weight evenly and that will help. Working on the reformer helps to build the muscles in the area while having the weight distributed properly.
Another way to see what I'm talking about is to look at your achilles tendon ... it should be perpendicular to the floor. Concentrate on holding it that way to exercise your foot in the proper position.
I have a family history of GI issues going back at least three generations. I agree that Lyme certainly made it worse, and I'm working on healing 100% in that area, but I also know it's genetically a weak spot for me. I've had a ton of improvement, like I said, eating fermented foods, but last night for dinner I didn't eat anything fermented, so had poor digestion again. No pain or other problems, just doesn't digest completely. But, I think you're right, it gets so much worse, painful, and inconvenient when you're sicker.
I really hope you find the right treatment combination to get you well. Seven years is a long time.
Posted by peacemama (Member # 17666) on :
M,
I am in awe at you and all you've done, all you've tracked and all of us that you've helped.
I've still had my best results with homeopathics. If you can find a good person it can, IMO target from a different angle than the abx. Deeper. My homeopathic herx is always bigger than any I've had on abx.
Posted by lymielauren28 (Member # 13742) on :
Hey Bergy,
It may have been a huge coincidence for you and a lucky one at that! I started Rifing for babs in June - it's almost the 1st of October and I still have to Rife for it. It does keep coming back. I'm not sure if I'm rifing often enough for babs and that may be part of the problem. I do it once every week or so and sometimes wait even longer.
This is because I rife for it and all symptoms are gone within an hour or so - I don't herx anymore just feel better after doing it. So I'll feel ok and babs free for a week or so and then the symptoms come back and then I rife for it again. I know one guy who beat babs using rife but he did it every day for about 3 weeks, using his machine about 25 minutes a day.
This may be what it takes to really kick it if you have a heavy load. Plus we all know that babs replicates much faster than Lyme.
My babs frequencies are 20,27 and 570. I also just added in 76 which some say hits babs. It definately hits something because both times I've used it I've had a reaction WHILE using it, which is unusual for me. I typically don't feel anything when sitting in front of my machine. The only other frequency I've felt a "hit" on while using it was 20 and 612.
I do understand that Metallic is trying to systematically eliminate what doesn't work and figure out what does, and i do respect that. It's just very hard NOT to push a treatment on others when YOU KNOW it works and works better than anything you've ever tried at that. Good thing I don't have a bullhorn haha! I've told many of my out-of-state Lyme friends that haven't rifed yet that they're lucky I don't live closer - I'd strap them down in front of my machine and make them use it, LOL!
It's just something I feel so strongly and passionately about because it's been so effective and miraculous for me. I also know that it may not be as effective for the next "lymie" - we're as different as our symptoms as far as what works and what doesn't...
Posted by D Bergy (Member # 9984) on :
I have found that frequencies works well for those who detox well, and not so good for those who do not.
This is the same result for most any treatment, those who detox well get better, and those who do not, suffer.
Metallic Blue may be one who cannot shake the toxins, so it is a difficult proposition, no matter what treatment is used.
I would guess that is the most likely reason for nothing working, even more proven treatments.
Dan
Posted by METALLlC BLUE (Member # 6628) on :
quote: lymielauren28
Hey Metallic, I'm so sorry for all the suffering you've endured. That you're still sane is a testament to your incredible character.
Knowing what I know now, my advice would be to Rife. It's incredible and has allowed me to discontinue all pharmacuetical meds. Even after I quit abx I was still treating babs with Mepron - when my insurance ran out I freaked - no way could I afford 2 bottles of Mepron every month and I was still really sick with babs symptoms.
I don't know why it took me so long to try my machine on my babesia infection, and I'm sorry it did. Just like Lyme, my machine has blasted my babs into oblivion. It makes me sick when I think of the thousands of dollars I spent just on antimalarials alone - and all that time all I really needed was my $3oo Dan Tracy.
I remember when you messaged me looking for information. It was May 17th 2008 thru March 24th of 2009. Sent me private messages talking about "The Beatiful Let down" and some things we had in common. You wrote telling me about Dan Tracy, and that you ended up having to wait 6 more weeks for a machine than you'd hoped. You told me you'd keep me up to date etc. You asked me about Italy, and that you'd visited when you were 18 years old. In the end you told me you were extremely confident in the treatment. I had in-fact read Bryan's book, Later you were willing to help me with the Zithromax, if I remember but were unable to find the bottle." In the end I did get extra Zithromax.
So, I kept track, I didn't forget. So tell me now more about your progress.
quote: lymielauren28 One of the other benefits of Rifing is that I'm not in a constant herx like I was with abx - I have more control. I usually Rife on Friday morning and herx Saturday and Sunday. I may still feel a little rough by Monday but I'm functional. The rest of the week is gravy.
All the excuses you're giving for not using your machine are the same ones that I used. I say quit with all that and give it a whirl - I don't think you'll be sorry.
Best of luck to you with whatever road you choose to take and I truly hope you get much better soon.
You provide a convincing argument that I've been trying to avoid for a long time. It just seems rather risky to turn to the IV only to wait for a treatment that may show no results, -- and at best, only improve my quality of life temporarily and thus require retreatments with uncomfortable IV or other sources.
I'm thinking very carefully about my next step Lauren. I "might" take a risk and focus on parasites, and Rife. I have to think over it and keep refining it. That's where you guys are coming in handy. Someone asked me above what I felt "In my gut" was this: "I think the biggest issue is probably Lyme Disease combined with Bartonella. However, since treating the Babesia has helped so immensely, I'm thinking it may be that I'm not progressing because of the Babesia. So, knocking one infection down at a time or together in an order makes sense to me. My immune system is normal aside from dysregulation with inflammation, but the inflammation isn't "insane." It's more along the lines of a low level inflammation that creates a lot of these symptoms, and if the proper infections are targetted, the triggers removal will decrease the inflammation.
It seems clear to me, that if Rife works as intended (and as reported by many hundreds of people that I've crossed), that I may be able to do this sooner rather than much later. I think considering Parasites can be done before then. It's been an issue many other people have brought up after reading my case. For whatever reason, it very well could be that, so I'll pursue it.
quote: D Bergy lymielauren28, have you found that Babesia is easily knocked down using frequencies?
I have treated this co-infection early on using frequencies and it all but disappeared for many months.I t may even be totally gone.
Can you tell me which frequencies you used, duration between sessions (i.e. every week), dose (time frame i.e. 2 mins) and how long it took before you saw results? Also, can you tell me the frequencies for the specifics which you used your treatment? Did you use it for Lyme, Bartonella, Babesia, Parasites, Viral, Organ/Lymph, whatever? I'm asking these same questions to Lauren.
quote: D BergyI am asking because it almost seemed to be too easy to knock out, and since I basically hit it a couple times and it was gone, I wonder if this is common or if it was some huge coincidence.
I think metallic blue is trying to limit the different approaches in an organized way, so effectiveness can be determined. A good idea in general. It gets confusing piling one thing on top of another.
At least that is how it appears to me.
Interesting reading. Lots of experience being imparted in this thread.
That's exactly right. Lauren knows that though, because she's been through it to some extent. Basically the idea is to pick an approach that is reasonable, low risk compared to other therapies, has the potential for a higher rate of success over other therapies, and can be done in a "shorter" time frame. Ironically, if you look at the whole picture of my case, Bartonella treatment would be reasonably short, but the risk is moderate to high. The time frame is 3-4 months continous, with a potential repeat cycle. Can Tetracycline or a maintence drug be used while on Levaquin? The parasite therapies can be used with Rife, so that's a possibility. I'm aware Bartonella or an oranism "similar" can be treated to a much lesser degree with Rife, but I don't know the latest data.
I think was made this thread so useful was how comprehensive we're making it. It's not serving just me, but anyone who has come to this place. It gives people an idea how to proceed -- sort of a road map, and ideas of what it takes in the worst possible situations to advance. I'll probably make a list near the end of the thread discussing in brief paragrapths what each person has said for a potential treatment regimen. Simplified, it may seem easier.
quote: sixgoofykids
I still have him look at my blood work for thyroid meds. I've cut down a lot on thyroid meds, but still take them. He is open to trying other things and I think it's good to take the risk. If it's not working, you will know.
It's nice to be living life again and not to have to think about or deal with Lyme.
For sure! These are all supps, too, nothing is for infections. I still use the Bionic just to be sure it doesn't all come back ... kind of a safety net for me.
Humaworm is available at www.humaworm.com . Parasites were a big deal for me. I really shot forward in my treatment back when I was on abx when I treated parasites and bartonella. He and I didn't know which one helped the most.
What your LLMD's perspective been -- more specifically -- when you've discussed the directions you've taken. How do you know parasites were such a serious part of your situation? Do you know which type of parasites? Also, how long did you treat them for, and with what treatment, and what dose? Bartonella: How did you handle that? How many treatments did you throw at it, and which drugs or other therapies were used?
quote: sixgoofykids Dr. Natura is a cleanse kit that you buy off the internet. It has some herbs you take in the morning. Then a fiber blend. Then a tea you drink at night. Very cleansing. Good herbs.
I appreciate your taking the time to offer this information.
I'm happy to. [Smile]
A good pilates instructor can help you build the muscles properly to help with the foot problem. Not just any old mat class, but a teacher who has experience and training to work on the reformer. Not saying it will fix it 100% or quickly, just that it will help you to build the muscles up how they're supposed to be. Chances are that you stand on the inside of your foot. If you stand barefoot you will probably notice that you don't stand evenly on the ball of your foot ... you most likely roll to the big toe side. Try to distribute the weight evenly and that will help. Working on the reformer helps to build the muscles in the area while having the weight distributed properly.
Another way to see what I'm talking about is to look at your achilles tendon ... it should be perpendicular to the floor. Concentrate on holding it that way to exercise your foot in the proper position.
I have a family history of GI issues going back at least three generations. I agree that Lyme certainly made it worse, and I'm working on healing 100% in that area, but I also know it's genetically a weak spot for me. I've had a ton of improvement, like I said, eating fermented foods, but last night for dinner I didn't eat anything fermented, so had poor digestion again. No pain or other problems, just doesn't digest completely. But, I think you're right, it gets so much worse, painful, and inconvenient when you're sicker.
I really hope you find the right treatment combination to get you well. Seven years is a long time.
You likely won't hear about me jumping into a Pilates routine anytime soon, however, it'll be on my mind. My body isn't in poor shape like it was. I was able to do weights and bike riding to build everything back up. However, the stretching and meditative aspect of Pilates appeals to me, so I'll think about it. Erica will probably give me insight into it and convince me somehow. I'm really glad you're feeling so much better. I know you also had a very long term illness. Being sick an entire lifetime has been hell on earth for me. The suffering has been unbearable. The 7 years of antibiotic therapy came way too late for me. I'm optimistic I can win this though, and I'm glad you're winning yours.
quote: peacemama M,
I am in awe at you and all you've done, all you've tracked and all of us that you've helped.
I've still had my best results with homeopathics. If you can find a good person it can, IMO target from a different angle than the abx. Deeper. My homeopathic herx is always bigger than any I've had on abx.
A lot of people have recommended Homeopathics. They aren't in conflict of Rife therapies, are they Lauren/Bergy? I'm thinking of giving the LDN another shot too, and possibily Rifampin (even though my Liver didn't like it). I can test it and see what my blood work does this time. Can Rifampin be mixed with Levaquin? Obviously the idea is to go after Bartonella.
quote: lymielauren28
Hey Bergy,
It may have been a huge coincidence for you and a lucky one at that! I started Rifing for babs in June - it's almost the 1st of October and I still have to Rife for it. It does keep coming back. I'm not sure if I'm rifing often enough for babs and that may be part of the problem. I do it once every week or so and sometimes wait even longer.
What are the symptoms that you experience prior to treating it? When it returns, what do you experience?
quote: lymielauren28This is because I rife for it and all symptoms are gone within an hour or so - I don't herx anymore just feel better after doing it. So I'll feel ok and babs free for a week or so and then the symptoms come back and then I rife for it again. I know one guy who beat babs using rife but he did it every day for about 3 weeks, using his machine about 25 minutes a day.
This may be what it takes to really kick it if you have a heavy load. Plus we all know that babs replicates much faster than Lyme.
My babs frequencies are 20,27 and 570. I also just added in 76 which some say hits babs. It definately hits something because both times I've used it I've had a reaction WHILE using it, which is unusual for me. I typically don't feel anything when sitting in front of my machine. The only other frequency I've felt a "hit" on while using it was 20 and 612.
How long do you do each frequency? (i.e. Dose). And you perform the cycle once per week you said. I asked Bergy above: "How long it took before you saw results? Also, can you tell me the frequencies for the specifics which you used your treatment? Did you use it for Lyme, Bartonella, Babesia, Parasites, Viral, Organ/Lymph, whatever? I'm asking these same questions to Lauren.
quote: lymielauren28I do understand that Metallic is trying to systematically eliminate what doesn't work and figure out what does, and i do respect that. It's just very hard NOT to push a treatment on others when YOU KNOW it works and works better than anything you've ever tried at that. Good thing I don't have a bullhorn haha!
I know the feeling. I understand exactly what your intent is, and since I know your history -- and you're a Switchfoot fan -- I can't help but feel your persuasiveness may move me. I've done my homework on Rife, so it's not exactly a stretch at all for me to invest 2 years. I just want to make sure I'm not up against other "evils" -- if you know what I mean. I want to make sure I know what I'm hitting. I think Lyme, Bartonella, Babesia and potential parasites is the issue. I want to make sure that's the issue. Lyme is definitive. A parasite of some sort (Likely Babesia) is a very high probability, at least 95% if I had to guess. Bartonella is entirely clinical, but I have all the symptoms. My feet ache a lot (I feel like I'm carrying 1,000 pounds and it's pressing my feet right into the ground. I have exaggerated psychiatric and G.I. symptoms compared to many other patients I've spoken to. I have the midline belly fat. I eat reasonably well, and exercise 1 hour every single day (occasionally rest once every two weeks maybe) and the fat doesn't budge. My calorie intact isn't excessive. At most, possibly the occasional 3,500 calories while splurging (once every couple weeks), and the rest of the time, about 2,000 to 2,500 calories. Dieting has never budged it. It seems I burn muscle instead of the fat too, even when I supplement with protein. So, that is a symptom of Bartonella of the variety Dr. Schaller talks about in his book. As far as Parasites, I don't know what symptoms they should cause -- I only know what the Malarone is treating and I haven't read much on them.
quote: lymielauren28I've told many of my out-of-state Lyme friends that haven't rifed yet that they're lucky I don't live closer - I'd strap them down in front of my machine and make them use it, LOL!
It's just something I feel so strongly and passionately about because it's been so effective and miraculous for me. I also know that it may not be as effective for the next "lymie" - we're as different as our symptoms as far as what works and what doesn't...
You said it sister. I thinking very carefully about it, because if I choose to do it, I may end up doing it within the next couple months. I'll finish this VFEND. We'll see how I feel. If I continue to improve, I'll do that. If I don't, I'll go back to Tetracycline so I can give my body a rest. Then, I'll come off all treatment entirely. How long do I have to be off antibiotics before beginning Rife therapy? What is it, like 1 month?
Also, if I do the machine, it's the EMEM3D2, with the manual knobs and the radiant bulb, as well as the hand held contact device with the metal plate you stand on. Which method is encouraged in your options?
[ 11-22-2009, 01:15 PM: Message edited by: METALLlC BLUE ]
Posted by sixgoofykids (Member # 11141) on :
Hi Metallic,
One Sept. I was at an appt with Dr. H and he said that because of my heavy cognitive symptoms, the next time I came to NY we were going to discuss IV treatment, but he wanted to try one more treatment first because of some success I had when we treated a GI infection with Cipro.
He put me on Levaquin (also Malarone, Lariam, Tindamax, and some others). In the meantime, I read about Humaworm and started on it myself.
When I went back in Jan. I was feeling much better and my head had cleared. I saw a HUGE tapeworm pass with the Humaworm. He asked how I knew it was a tapeworm. I said because it was flat, about 7 ft. long that I saw, and I gained 10 pounds after passing it, and my appetite reduced.
I did Humaworm four times. I passed probably 30 roudworms about 10-15 inches long using Enula.
Not everyone has visible parasites, in fact, something like 90% of parasites are not visible to the naked eye.
Dr. H and I really did not know how much improvement came from Humaworm and how much from bart treatment. I took Levaquin for 3 months, then followed it up with Rifampin for 6 weeks. Rifampin may as well have been sugar pills as there was none of it left.
Even if you don't try Pilates, you might try focusing on holding your foot properly and walking that way around your house a little each day to try to build the muscle up correctly in that foot.
I had an appt with the PA over the phone when I got back from Germany. She said unless I needed to go back on treatment and get direction from them that I didn't need to have phone consults anymore, so I have not had an appt. since Nov of last year. As a result, I have not talked to Dr. H about what I have done since then.
Posted by METALLlC BLUE (Member # 6628) on :
quote: sixgoofykids Hi Metallic,
One Sept. I was at an appt with my LLMD and he said that because of my heavy cognitive symptoms, the next time I came to NY we were going to discuss IV treatment, but he wanted to try one more treatment first because of some success I had when we treated a GI infection with Cipro.
Yeah, that's what some G.I. physicians prescribe for Crohn's Disease with fistualizing components. I had a fistula and man was it painful. Flagyl nor Cipro helped back then but it was under entirely different circumstances. It might be useful now. That's why I'd like to follow up on the Levaquin.
quote: sixgoofykids He put me on Levaquin (also Malarone, Lariam, Tindamax, and some others). In the meantime, I read about Humaworm and started on it myself.
Do you think I could benefit from a similar protocol? Lariam and Tindamax are generally safe?
quote: sixgoofykids When I went back in Jan. I was feeling much better and my head had cleared. I saw a HUGE tapeworm pass with the Humaworm. He asked how I knew it was a tapeworm. I said because it was flat, about 7 ft. long that I saw, and I gained 10 pounds after passing it, and my appetite reduced.
How long were you treating with those antibiotics and the Humaworm? Was it a month between appointments or longer?
quote: sixgoofykids I did Humaworm four times. I passed probably 30 roudworms about 10-15 inches long using Enula.
Not everyone has visible parasites, in fact, something like 90% of parasites are not visible to the naked eye.
How far apart was each cycle of Humaworm, and did you stay on the antibiotics the whole time. How long did you stay on the antibiotics and did you start each one individually? Was there different time frames for each drug or were they generally all stopped together?
quote:sixgoofykids He and I really did not know how much improvement came from Humaworm and how much from bart treatment. I took Levaquin for 3 months, then followed it up with Rifampin for 6 weeks. Rifampin may as well have been sugar pills as there was none of it left.
Was the Levaquin, Tindamax, Malarone and Lariam all taken together for that three months? I'm wondering if going back to Rifampin would be beneficial even though my Liver Enzymes went up. I figure what's the worst that could happen if I run testing one week into it? If the numbers go up, I stop, and if they don't, I could continue? Thoughts? The Bartonella is really a concern because we don't know what type of Bartonella it is -- or if it even is Bartonella -- Like Burrascano says. Whatever it is, it has the same symptoms other patients have complained about.
quote:sixgoofykids Even if you don't try Pilates, you might try focusing on holding your foot properly and walking that way around your house a little each day to try to build the muscle up correctly in that foot. [Smile]
I have Flexible Foot Flat Feet with tibia torsion on the same leg. It's a ***** and I do have the symptoms you mentioned. Over pronation, and an inability to control it. I bought a stretching device which has helped a lot. It's a simple tool that I bought for 30 dollars. I used it for about two weeks and my feet improved a lot. I think Plantar Fascitis was involved too because icing in combination with doing forward and reverse calve exercises (using the device and just flexing my foot back and forth -- seemed to improve flexibility and improve the foot. However, it's going to be a chronic problem for life unless I wear shoes all the time. Without the support the foot collapses no matter what I do, and the muscles surrounding the area just go back to the way they were. It really sucks, but at least I know I'll be able to walk reasonably ok at some point.
quote: sixgoofykids I had an appt with the PA over the phone when I got back from Germany. She said unless I needed to go back on treatment and get direction from them that I didn't need to have phone consults anymore, so I have not had an appt. since Nov of last year. As a result, I have not talked to my LLMD about what I have done since then.
What have you done since then, just the things you mentioned? Are you sleeping at set times and exercising beyond the Pilates? Do you find you can think clearly? What does the Bionic do anyway -- biologically speaking. I know it involves photons but beyond that no matter how much data I read about it I still never quite understand the underlying way that it works.
[ 11-22-2009, 01:16 PM: Message edited by: METALLlC BLUE ]
Posted by CD57 (Member # 11749) on :
How does one find a Lyme literate immunologist? Goodness.
TF plus is from Researched Nutritionals. I just ordered that, will let you know how it goes.
-------------------- Immunological impairment could mean you might need a Lyme Literate Immunologist. However, before that I'd try Transfer Factor Plus, with continual high dose antibiotics (Preferably those known to "not" affect white blood cells or do anything else to the immune system.). Immune stimulation and modulation comes in a variety of forms, but light to moderate exercise for 20-30 mins can help increase immune response when combined with high dose antibiotics, LDN, Transfer Factor. The exercise part works for me. The Transfer Factor would have likely made a massive impact had I known at the time that I needed high dose antibiotics in combination. I felt "really really" well on Transfer Factor Plus for about one week, but this was before any other treatment. The progress disappeared though. I've also concluded based on my experience that Transfer Factor Plus should not be taken daily. It should be pulsed. Perhaps 5 days on, 5 days off etc. The dose of TF should also be very high, unlike what the package says. It should be at least 9 pills per day taken three times apart. Unfortunately the product is expensive, but with pulsing it, costs would reduce substantially. I think I may return to the TF again as another possibility when I get back on the antibiotics. Cost is about $50 per bottle with 60 capsules. Divide 60 by 9 and it'll only last about 6 days per bottle. So per month, it's about $200 I would think. My concern is some people don't respond though, so it's a risk.
My symptoms do decrease during exercise, which leads me to believe that endorphins combined with anti-inflammatory actions (modulation) help the immune system. IVIG could very well be helpful to you if it really is your immune system. You may need testing further to see if it's necessary though because there are risks of reaction. It's worth investigating though. The LDN was a good idea. Dr. H says combining LDN with a product called "Pekana" which is a Homeopatic treatment helps a lot of his patients. Combined they work much better than either alone he said.
I think the biggest issue is probably Lyme Disease combined with Bartonella. However, since treating the Babesia has helped so immensely, I'm thinking it may be that I'm not progressing because of the Babesia. So, knocking one infection down at a time or together in an order makes sense to me. My immune system is normal aside from dysregulation with inflammation, but the inflammation isn't "insane." It's more along the lines of a low level inflammation that creates a lot of these symptoms, and if the proper infections are targetted, the triggers removal will decrease the inflammation.
Posted by METALLlC BLUE (Member # 6628) on :
quote: How does one find a Lyme literate immunologist? Goodness.
TF plus is from Researched Nutritionals. I just ordered that, will let you know how it goes. CD57 How does one find a Lyme literate immunologist? Goodness.
TF plus is from Researched Nutritionals. I just ordered that, will let you know how it goes.
The first place to start would be to ask your physician you see for the illness. They "might" know of someone who is at least Lyme friendly.
The Transfer Factor Plus I was talking about is made by 4 Life, but you can compare the products to see if they're compatible.
Posted by blaze (Member # 16838) on :
Your symptoms are similar to mine. Biaxin, rifampin, plaquenil, malarone. They all help some, but I can't seem to get over the hump of about 30-40% improvement, some days even less.
Posted by keltyl (Member # 14050) on :
Six (and all)...I see the same LD as you, only the other PA. I have bugged him for months about parasites, since I feel it is a problem for me. Finally, he talked with an infectious disease doc in NYC who deals with parasites. He says he is not well versed in treating them, talked with this doc, and they both feel it would be worthwhile for me to see him.
Nothing I have been in in a year and 1/2 has worked for me. Right now I'm on rocephin, Factive, and Plaquenil.
It's always in the back of my mind, you saying you didn't see any improvement until you dealt with the parasites. I had a tapeworm as a kid, and I think it never went away.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by METALLlC BLUE: [QUOTE] Do you think I could benefit from a similar protocol? Lariam and Tindamax are generally safe?
Lariam can have some psych effects. I hallucinated twice, the first two times I took it, but didn't tell Dr. H (I was bad! LOL). Then no trouble after that. You could talk to Dr. H about it. I know I was on several other things - lariam, malarone, tindamax, levaquin, artemisia, and I can't remember which antibiotic .... maybe mino? or amoxy? In the end, I think it was the levaquin more than the malarone/lariam because it ended up that I had to go back on Mepron, those two weren't enough.
quote: How long were you treating with those antibiotics and the Humaworm? Was it a month between appointments or longer?
It was a little over three months, but the Humaworm was only 30 days. I had monthly phone consults and blood work, but I have to fly to get to NY so he didn't make me come every month.
quote: ]How far apart was each cycle of Humaworm, and did you stay on the antibiotics the whole time. How long did you stay on the antibiotics and did you start each one individually? Was there different time frames for each drug or were they generally all stopped together?
I did the first three rounds about 90 days apart. Then the next one was several months later. I stayed on the abx. I did add each abx in every couple days so if I had a problem I would know, though Dr. H liked me to start them all together. All were stopped together unless I stayed on one in the new combo.
quote:Was the Levaquin, Tindamax, Malarone and Lariam all taken together for that three months? I'm wondering if going back to Rifampin would be beneficial even though my Liver Enzymes went up. I figure what's the worst that could happen if I run testing one week into it? If the numbers go up, I stop, and if they don't, I could continue? Thoughts? The Bartonella is really a concern because we don't know what type of Bartonella it is -- or if it even is Bartonella -- Like Burrascano says. Whatever it is, it has the same symptoms other patients have complained about.
Yes, I took them all together during that time. The first six weeks was HORRIBLE! Then I saw improvement. The pain the Levaquin caused was almost unbearable .... epsom salts nightly. We didn't know what kind of bart I had either, or if I even had bart.
quote:I have Flexible Foot Flat Feet with tibia torsion on the same leg. It's a ***** and I do have the symptoms you mentioned. Over pronation, and an inability to control it. I bought a stretching device which has helped a lot. It's a simple tool that I bought for 30 dollars. I used it for about two weeks and my feet improved a lot. I think Plantar Fascitis was involved too because icing in combination with doing forward and reverse calve exercises (using the device and just flexing my foot back and forth -- seemed to improve flexibility and improve the foot. However, it's going to be a chronic problem for life unless I wear shoes all the time. Without the support the foot collapses no matter what I do, and the muscles surrounding the area just go back to the way they were. It really sucks, but at least I know I'll be able to walk reasonably ok at some point.
It's good that you're aware of it and are doing what you can do.
quote: What have you done since then, just the things you mentioned? Are you sleeping at set times and exercising beyond the Pilates? Do you find you can think clearly? What does the Bionic do anyway -- biologically speaking. I know it involves photons but beyond that no matter how much data I read about it I still never quite understand the underlying way that it works.
I methodically used the Bionic to treat infections when I got back. I did coffee enemas to help with toxins as I felt I needed them. For a while it was daily, now it's once every couple weeks.
I've done five Hulda Clark liver cleanses. HUGE, HUGE help for me.
I've taken a round of Humaworm. Now I'm doing Dr. Natura (an herbal cleanse).
I tried taking some herbs, but find the photons do better on their own.
KPU has been a big help, second to the Bionic.
Right now I'm in training to become a Pilates instructor so I'm doing 7+ hours per week of Pilates classes, so nothing else as far as structured exercise. I might go on a walk or bike ride for leisure. Before this, I was doing Pilates 2 x per week, weights 2 x per week and cardio 4 x per week for 40 min.
I generally go to bed around the same time and sleep until I wake up. It was 9-10 hours, but has gone down to 7-9 hours.
No cognitive symptoms, except, sometimes I have a poor memory. I have trouble remembering names. I have trouble recognizing faces. None of that is out of the range of normal though, except I think my memory used to be a little better than it is. I can once again remember what I need at the grocery, that was a big deal.
Basically, the photons give energy to the body, and the nosodes taped to the solar plexus with the bacteria in them give the immune system direction. I think that you can't find how exactly they work because I don't think we really know. It works via physics and we're used to chemistry.
I chronicled every single thing I've done in my blog if you want details, though I'm happy to answer in this manner, it's just not as detailed (or as long).
Posted by pab (Member # 904) on :
Have you seen the slide show from the June 26, 2008 Lyme-Autism Connection Conference?
Pages 22 - 46 shows 24 different things that interact with Lyme. It's an impressive diagram!
Posted by METALLlC BLUE (Member # 6628) on :
Here is the list of interactions from that chart that someone listed above my post. Here are the ones I've treated heavily (T) and here are the ones that I haven't treated (U)(Undone), and here are the ones I think were undertreated and still possibilities (UP)
Bartonella (UP)
Anaplasma/Ehrlichia (T)
Parasites (U)
Mycoplasma (T)
Morgellons (U)
Heavy Metals (T)
Allergy (U)
Hormone Dysregulation (UP)
Adrenal Fatigue (U)
Pesticides (Environmental Pollutants) (U)
Geopathic Stress (U)
Worms (U)
Prions (U)
Electromagnetic Stress (U)
Genetic Mutations (U)
Depression & Anxiety (T)
Dysbiosis/SIBO (U)
Viruses (UT)
Biotoxins (T)
Yeast (T)
Mold (UP)
Leaky Gut (U)
Babesia (UP)
Bacteriophage (U)
Now I'll list the them in the order of treatment through total untreated and mention some of the things that were done or not done. My primary focus is on the Babesia, Bartonella, Parasites presently. If these are preventing recovery from Lyme, then I need to figure it out.
Treated Heavily
(T)I never was diagnosed with anaplasma/Ehrlicia, but I treated it extremely heavily with drugs that would have resolved the problem.
(T)Mycoplasma Pnemonia was heavily treated as well, with cyclines, quinalones, and a variety of drugs.
(T)Heavy Metals: Mine were high for Mercury and Lead. I have treated heavily using the Cowden, Metal Chelation, including Chelex, Chlorella, ALA, NAC, for 6-12 months. I think (though can't say definitively) that this was treated adequately.
(T)Depression and Anxiety were treated symptomatically and responded to "only" Welbutrin, Lamictal and Ativan. None of the other treatment drug choices worked. I still have a lot of depression, but it's far from significant like it was.
(T)Biotoxins have been treated at length, but there are protocols like the Shoemaker that were recommended, but which I never did. I didn't feel that this direction was necessary right now.
(T)Yeast & Mold were treated with Grapefruit Seed Extract, Probiotics, VFEND, and Diflucan, as well as Nystatin and other products from Cowden as well as Dr. Zhang.
Untreated issues:
(U)Parasites could very well be a problem in my case, as well as worms. I'm considering this fully right now as the treatment is easy and can be done quickly.
(U)Morgellons: I doubt this has any role in my condition. I've seen no "major" symptoms that stand out. It was left untreated for this reason.
(U)Allergy: I have dust allergies and possibly allergies to certain grains (Including Gluten), but the symptoms disappear at times, allowing me to eat things just fine, and other times I get gas and bloating. As far as medication allergies, I've had some. There could be other allergies at work, but I don't think that's an issue to get into at this point on the path.
(U)Adrenal Fatigue: I don't appear to have it, given I have the opposite of what most here have. I have hypercortisolism in the morning and evening. My levels are always high. Rather this would be a hormone dysregulation. We have used treatments for that.
(U)Pesticides (Environmental Pollutants): It's unlikely that this is my problem. I've done treatments that would indirectly target this, and of course I feel no better no matter where I go for extended periods of time. However, we did have Mold on my bathroom ceiling and air conditioner, so in a sense we treated those factors.
(U)Geopathic Stress: Someone told me to check the house for Radon. Is there other things I should be looking for? As far as I know that was tested, but I have to confirm it.
(U)Worms: A long with Parasites, it's an issue that is up in the air. I am very seriously preparing to possibly pursue that direction shortly.
(U)Prions: Never considered it. I'm not really sure I could. How would it be handled?
(U)Electromagnetic Stress: I feel the same no matter where I go. Away from EMF, and in front of my Wireless PC. Nothing seems to change this aspect of my health that I know of. Genetic Mutations
(U) Leaky Gut: I had this problem at one time. It appears to be gone now. If I treated it, it was by accident and thus I consider untreated. I used heavy Prednisone for a period of time before diagnosis and the symptoms went away entirely, along with all the bowel inflammation which I think caused it (leading to healing). It's unknown exactly what happened.
Undertreated and or a possibility:
(UP)Bartonella: This is a big one. I'm going to pursue a long course of Levaquin to see. I may consider Rifampin again, but the first time I had high liver enzymes as a result of it's use. Are there other treatments to mix with Levaquin or would it be effective itself over the 3 + month period? It's been undertreated in my opinion.
(UP)Hormone Dysregulation: We used Seriphos to lower my cortisol levels but the problem seemed a bit bigger and may need more options. What are my options for lowering that as well as other things? I did treat Thyroid with Armour T for many many months. No change was noted.
(UP)Viruses: All my tests came back negative except a low IGG titer for EBV. We treated it with Valtrex. I asked about heavier treatments but they said it wasn't a concern without other viral components.
(UP)Babesia: We've hit it hard with Zithromax, Plaquenil, Mepron, and now Malarone. We used high doses. The symptoms improved but aren't gone. I also used extremely high doses of Artemesiae by Dr. Zhang while on the Mepron/Zith. The doctor told me to drop it after I was seeing no results. Any recommendations for further Babesia therapies?
Posted by METALLlC BLUE (Member # 6628) on :
quote: keltyl Six (and all)...I see the same LD as you, only the other PA. I have bugged him for months about parasites, since I feel it is a problem for me. Finally, he talked with an infectious disease doc in NYC who deals with parasites. He says he is not well versed in treating them, talked with this doc, and they both feel it would be worthwhile for me to see him.
Nothing I have been in in a year and 1/2 has worked for me. Right now I'm on rocephin, Factive, and Plaquenil.
It's always in the back of my mind, you saying you didn't see any improvement until you dealt with the parasites. I had a tapeworm as a kid, and I think it never went away.
Perhaps you could start treating yourself with the Humaworm. I looked into it, and it's only $30. I'm having a problem purchasing the product from their website though. Their Paypay is rejecting my credit card for some reason. Is there another place I can buy the product Six?
Posted by coltman (Member # 21272) on :
quote: (U)Worms: A long with Parasites, it's an issue that is up in the air. I am very seriously preparing to possibly pursue that direction shortly.
Ivermectin seems good .And cheap.
quote: Hormone Dysregulation. High Cortisol
Exercise lowers cortisol levels. One of the things to try
quote: (UP)Babesia: We've hit it hard with Zithromax, Plaquenil, Mepron, and now Malarone. We used high doses. The symptoms improved but aren't gone.
Add Clindamycin to Plaquenil? Clindamycine + quinine is treatment of choice for babs
Posted by METALLlC BLUE (Member # 6628) on :
quote: sixgoofykids Lariam can have some psych effects. I hallucinated twice, the first two times I took it, but didn't tell my LLMD(I was bad! LOL). Then no trouble after that. You could talk to himabout it. I know I was on several other things - lariam, malarone, tindamax, levaquin, artemisia, and I can't remember which antibiotic .... maybe mino? or amoxy? In the end, I think it was the levaquin more than the malarone/lariam because it ended up that I had to go back on Mepron, those two weren't enough.
This is very helpful. I haven't done a few of those drugs, including Amoxy. Did they give that to you prior to Bicillin or does it have different affects than Omniceft and Bicillin? I've been told the high dosing has an impact? If you were in my shoes, what would you focus on -- knowing what you do now?
quote: sixgoofykids It was a little over three months, but the Humaworm was only 30 days. I had monthly phone consults and blood work, but I have to fly to get to NY so he didn't make me come every month.
Ok, very helpful. I feel like I was undertreated inspite of what the doctor said. The N.P (J) especially was most hesitant about prescribing just about anything I needed. He felt alternative methods were more suitable, but I don't agree at this point.
quote: sixgoofykids I did the first three rounds about 90 days apart. Then the next one was several months later. I stayed on the abx. I did add each abx in every couple days so if I had a problem I would know, though he liked me to start them all together. All were stopped together unless I stayed on one in the new combo.
It only makes sense to me, and I don't understand why he doesn't suggest the same thing to patients. Do you think multiple cycles are necessary for the average person? And what about this Natura that you've mentioned. What is it's purpose?
quote: sixgoofykids Yes, I took them all together during that time. The first six weeks was HORRIBLE! Then I saw improvement. The pain the Levaquin caused was almost unbearable .... epsom salts nightly. We didn't know what kind of bart I had either, or if I even had bart.
It's good that you're aware of it and are doing what you can do. [Smile]
When you saw horrible, do you mean Herxheimer horrible -- or that with side effects etc? The pain of the Levaquin, was that a side effect or the actual infection being targetted? When I used Bactrim, I had really bad pain during the Herxheimer period. It totally incapacitated me, but then lifted. It's such a shame I can use it.
quote: sixgoofykids I methodically used the Bionic to treat infections when I got back. I did coffee enemas to help with toxins as I felt I needed them. For a while it was daily, now it's once every couple weeks.
I hear a lot about the enemas. I'm not sure how to tell whether it would or wouldn't be necessary. I suppose I would have to try to know, and while I'd love to feel better, something tells me I have bigger fish to fry first.
quote: sixgoofykids I've done five Hulda Clark liver cleanses. HUGE, HUGE help for me.
I've taken a round of Humaworm. Now I'm doing Dr. Natura (an herbal cleanse).
The Natura herbal cleanse and Hulda Clark products are in capsule form? How long are cycles (i.e. 2 months?) between the 5 times you've done it, and what was the duration of each cycle? (i.e. 30 days)
quote:sixgoofykids I tried taking some herbs, but find the photons do better on their own.
The machine cost a lot of money, which is sad for someone like me, but I do think I have access to the Bionic temporarily if I went to visit Erica for 3 months -- which I plan on doing. I think I need to explore other things before I reach that point though.
quote: sixgoofykids KPU has been a big help, second to the Bionic.
Can you tell me more about the KPU, is it a product, cost, cycles, duration? What is it basically?
quote: sixgoofykids Right now I'm in training to become a Pilates instructor so I'm doing 7+ hours per week of Pilates classes, so nothing else as far as structured exercise. I might go on a walk or bike ride for leisure. Before this, I was doing Pilates 2 x per week, weights 2 x per week and cardio 4 x per week for 40 min.
I generally go to bed around the same time and sleep until I wake up. It was 9-10 hours, but has gone down to 7-9 hours.
No cognitive symptoms, except, sometimes I have a poor memory. I have trouble remembering names. I have trouble recognizing faces. None of that is out of the range of normal though, except I think my memory used to be a little better than it is. I can once again remember what I need at the grocery, that was a big deal.
Basically, the photons give energy to the body, and the nosodes taped to the solar plexus with the bacteria in them give the immune system direction. I think that you can't find how exactly they work because I don't think we really know. It works via physics and we're used to chemistry.
I chronicled every single thing I've done in my blog if you want details, though I'm happy to answer in this manner, it's just not as detailed (or as long).
Wow, I'm impressed. So basically you're living the same type of lifestyle I would live. What an amazing recovery process. It's a shame it takes such hard work and so much money, but I'm really appreciative of your helping me and that you are doing so much better. I'd take one of "your" classes one day when I get better. Wouldn't that be fun? I'm definitely motivated now instead of discouraged. Yet, still burned out at the same time. I'll come out of it though.
I'm going to read your blog in detail to clarify all these points. I'd love to know more about how Photon therapies work, but unfortunately it remains a mystery right now for me. I don't know physics or chemistry "that" well.
[ 11-22-2009, 01:17 PM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
quote: Ivermectin seems good .And cheap. Exercise lowers cortisol levels. One of the things to try. Add Clindamycin to Plaquenil? Clindamycine + quinine is treatment of choice for babs.
Excellent, so you question plaquenil with Clindamycin? I think I'd certainly give the CL+Q a shot after the Malarone. Can they actually be done together if you know?
I get plenty of exercise (Not enough stretching though), but I ride my stationary bike for about 1 hour a day. I might benefit from doing it earlier instead of a few hours before bedtime. I also find I'm far more stressed when I play my Xbox near bedtime.
I think those may help. Stretching and meditating may be worthwhile as they give me time to slow down. The only problem is I don't like doing either!
Posted by METALLlC BLUE (Member # 6628) on :
Here is some additional information to help people see "exactly" where I am in my symptoms and their intensity. It'll help you see what areas are most affected. I wrote this as part of an update for my LLMD when I saw him on the 15th of September. My symptoms haven't changed since.
Here is a legend so you understand what things mean:
Rating Scale. You'll see the words "None" "Low" "high" etc, following the symptom on the list. Each one below gives you an idea from your own perspective how it affects me.
None: No symptoms at all
Low: Minimal and intermittent, tolerable
Moderate: Some symptoms, some what tolerable
High: Intense symptoms, potentially intolerable
Severe: Intolerable symptoms, extreme.
Note: The Symbol (+ 1) indicates a step up from one tier to another since the last appointment. (- 1) indicates a step down from one tier. (+ 2) onward indicates two, etc.
Present Symptoms: [09-15-09]
Face, Neck, Head o Unexplained Hair loss - Moderate o Headaches - Moderate o Twitching of facial or other muscles - Low o Facial Paralysis - None o Tinging (nose, cheeks or face) - None o Stiff or painful neck, creaks, cracks - High o Jaw pain or stiffness - High + 1 o Sore throat - None o Facial Nerve Pain - Moderate + 2
Eyes & Vision o Double or Blurry Vision - High o Floaters -Moderate - 1 o Pain or Swelling of Eyes - Low o Sensitivity To Light - High o Flashing Lights - Moderate
Digestive and Exretory Systems o Diarrhea - None o Constipation - None o Bloating Gas - High o Abdominal Pain - Moderate o Irritable Bladder (trouble stopping or starting)- Low o Upset Stomach (Nausea or Pain) - Moderate
Musculoskeletal System o Joint Pain or Swelling or Arthritis - High o Stiffness Of Joints, Back, Neck - High o Muscle Pain or Cramping - High
Respiratory & Circulatory o Shortness Of Breath, Cough - Low - 1 o Chest Pain or rib soreness - High o Night sweats or Unexplained chills - Moderate - 1 o Heart Palpitations or Extra Beats - None o Heart Blockage - None
Neurological System o Tremors or unexplained shaking - Moderate o Burning or Stabbing Sensations - High o Weakness or partial paralysis - Moderate o Pressure In Head - Moderate o Numbness in body, tingling, pinpricks - Moderate o Poor balance, dizziness, difficulty walking in morning - High o Lightheadedness, wooziness - Moderate o Ringing in ears Low - 1 o Fine motor movement impaired: High
Psychological, Psychatric Well Being o Mood Swings, Irritability - High - 1 o Unusual Depression - Moderate o Low frustration tolerance: - Severe o Suicidal Thoughts: Low + 1 o Disorientation (Getting or Feeling Lost) - Moderate o Feeling as if you're losing your mind - Moderate o Overemotional reactions - High o Too much sleep or Insomnia - Severe o Difficulty falling asleep or staying asleep. - Severe
Mental Capacity, or Cognitive Function o Memory Loss (Short or long term) - High o Multitasking - Severe o Confusion (Difficult Thinking) - High o Difficulty with Concentration or reading - High o Going To the Wrong places - Moderate o Speech Difficulty (slurred or slow) - Low o Stammering Speech - Low o Forgetting how to perform simple tasks - Moderate
Reproductive o Loss Of Sex Drive - Moderate o Sexual Dysfunction (Testicular pain) - None o Impotence - None
General Well-Being o Unexplained Weight Loss or Gain - High o Extreme Fatigue - High o Swollen Glands - None o Unexplained Fever (High or low grade) - Moderate o Continual Infections - None o Wax and Waning Symptoms - High o Migrating Pain - High
Skin o Unexplained Rashes - High o Itchy Skin: High + 1 o Slow Healing: High
Repeat of the Legend for post reference:
None: No symptoms at all
Low: Minimal and intermittent, tolerable
Moderate: Some symptoms, some what tolerable
High: Intense symptoms, potentially intolerable
Severe: Intolerable symptoms, extreme.
Note: The Symbol (+ 1) indicates a step up from one tier to another since the last appointment. (- 1) indicates a step down from one tier. (+ 2) onward indicates two, etc.
Cliff Notes: This post contains a list of my symptoms and their intensity. I update the list monthly and provide my LLMD. Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by METALLlC BLUE: [QUOTE] ]This is very helpful. I haven't done a few of those drugs, including Amoxy. Did they give that to you prior to Bicillin or does it have different affects than Omniceft and Bicillin? I've been told the high dosing has an impact? If you were in my shoes, what would you focus on -- knowing what you do now?
I think Bicillin would probably be better. Dr. H himself used Bicillin to treat his own Lyme Disease. I also liked Omnicef, but because of GI trouble took Cedax (same family) instead. I was not willing to do Bicillin. I was very thin when I tried it (one time) and it just didn't work out for me. I also bruised very, very easily at the time.
You do need high dosing on the amoxy. I did 7500 mg per day.
Knowing what I do now, I think hitting the Lyme is the biggest thing. I still had bart and babs last time I was muscle tested, which was in April, but I was very functional ever since I returned from Germany the Nov. before that. The babs and bart weren't as significant with the Lyme gone. Though I think with abx treatment it's a good idea to treat coinfections .... I think ILADS experience has shown that.
quote: Ok, very helpful. I feel like I was undertreated inspite of what the doctor said. The N.P (J) especially was most hesitant about prescribing just about anything I needed. He felt alternative methods were more suitable, but I don't agree at this point.
Maybe see if you can make appts periodically with Dr. H. He would try to switch me over to herbs, but we always ended up going back to abx as soon as I declined.
quote: It only makes sense to me, and I don't understand why he doesn't suggest the same thing to patients. Do you think multiple cycles are necessary for the average person? And what about this Natura that you've mentioned. What is it's purpose?
Yes, I do think it takes multiple cycles, and also multiple treatments. I never saw one roundworm with Humaworm, but saw about 30 of them on Enula.
Dr. Natura is about cleansing the colon. It also has cleansing herbs for the liver, kidneys, etc. Check out their website, it has impressive herbs in it.
quote: When you saw horrible, do you mean Herxheimer horrible -- or that with side effects etc? The pain of the Levaquin, was that a side effect or the actual infection being targetted? When I used Bactrim, I had really bad pain during the Herxheimer period. It totally incapacitated me, but then lifted. It's such a shame I can use it.
Herxheimer horrible. We presumed the pain to be from the infection. I talked to Dr. H about it on the phone one night because I was concerned about it. It ended up being the infection as the pain started lifting and went away completely during the 3 month period. I felt really good, had a clear head, and was highly functional at that point. It lasted for a while, but then babesia creeped in again. The bart seemed to stay away.
quote: I hear a lot about the enemas. I'm not sure how to tell whether it would or wouldn't be necessary. I suppose I would have to try to know, and while I'd love to feel better, something tells me I have bigger fish to fry first.
A lot of what we do creates toxins. I found the enemas gave me relief. I did them daily almost all through abx treatment. On really bad days my kids would make the coffee for me and bring it upstairs because they could see the difference themselves. Dr. H is supportive of them, you can ask him about them. He doesn't outright recommend them (LLMD's have to be careful, you know), but he was supportive of me doing them.
quote: The Natura herbal cleanse and Hulda Clark products are in capsule form? How long are cycles (i.e. 2 months?) between the 5 times you've done it, and what was the duration of each cycle? (i.e. 30 days)
Here's the Hulda Clark website. http://tinyurl.com/m45nd8 You don't have to buy a product from them, it's olive oil, grapefruit juice, epsom salts, and orthinine. I did them two weeks apart, except for a couple that I waited a little longer.
Dr. Natura is capsules and fiber in the morning and tea in the evening. The first time you do it, you're supposed to do it for three months. It's a more expensive one.
quote:The machine cost a lot of money, which is sad for someone like me, but I do think I have access to the Bionic temporarily if I went to visit Erica for 3 months -- which I plan on doing. I think I need to explore other things before I reach that point though.
Or maybe even do the follow up work with the PE1, which is less expensive. Some who can't get the Bionic are using it with good results. You do need follow up work after the Bionic.
quote: Can you tell me more about the KPU, is it a product, cost, cycles, duration? What is it basically?
Basically, it's addressing a mineral deficiency that Dr. K has found 80% of Lyme patients have. There are a few threads here on it. Pyroluria, kryptopyrroluria threads. Also, check out drrandy.org, then click on articles, he's written a good article on it.
quote: Wow, I'm impressed. So basically you're living the same type of lifestyle I would live. What an amazing recovery process. It's a shame it takes such hard work and so much money, but I'm really appreciative of your helping me and that you are doing so much better. I'd take one of "your" classes one day when I get better. Wouldn't that be fun? I'm definitely motivated now instead of discouraged. Yet, still burned out at the same time. I'll come out of it though.
I'm going to read your blog in detail to clarify all these points. I'd love to know more about how Photon therapies work, but unfortunately it remains a mystery right now for me. I don't know physics or chemistry "that" well.
It is nice to be living life again and only thinking of Lyme when I'm on here answering questions. I'd love to have you in one of my classes! I taught my husband today ... my first guinea pig. He did great, but I found it hard to teach! I'll get it figured out though.
[ 10-01-2009, 06:35 PM: Message edited by: sixgoofykids ]
Posted by sixgoofykids (Member # 11141) on :
As far as I know you can only get Humaworm from the website. There might be a phone number there you can try.
Posted by keltyl (Member # 14050) on :
I am trying to keep up with this thread since I need this info too. Thanks!
Metallic...I did several months of Bicillin 2-3x a week. Didn't do a thing for me either, just like everything else.
Posted by JamesNYC (Member # 15793) on :
MB,
Wow, I am impressed. I'm not nearly as sick as you and you are FAR more organized than I am!
The sx that stood out are SO typical of lyme and babesia. And, those two work together to suppress the immune system for the other.
Babesia sx include many of yours that you rate as "high" and "moderate". They included, shortness of breath, fatigue, night sweats, difficulty sleeping/insomnia, depression, weight gain, and fever. The shortness of breath and sweats have improved, so that's great.
I guess stay on it (I *think* you're still on Malarone). It can take a very long time depending on the severity of the infection, and yours seems severe. Mepron is supposed to work better, as you know, but whatever works for you is best.
(Babs has been my big problem, so I'm partial to getting rid of it. Many of my sx I thought were from Lyme were actually Babs).
This is a great thread, btw. It lays out every treatment option there is.
God, I hope something finally works for you. I think it's great that even with all your illness you have a GF! That's awsome!
James
Posted by keltyl (Member # 14050) on :
Metallic....Apologize for the name, I really did know that but sure you know what a Lymetard is, especially for me when it starts getting to be late afternoon.
Posted by CD57 (Member # 11749) on :
One note re Levaquin: my current LLMD says that it actually hits Lyme as well as bart.
Posted by METALLlC BLUE (Member # 6628) on :
Further notes for consideration. A patient sent this to me privately. Actually a few patients did in various combinations.
I'm not sure if they would tolerate their names being used, so I'll just supply the data.
Stem Cell therapy is currently being considered a treatment for aspects of Lyme Disease, including potentially in helping patients with compromised immune systems.
Stealth Pathogens (L-form of Lyme)Another area that is classic, yet has not yet been mentioned, is the work of Dr. Lida Mattaman. She, as you may know, was well known for the discovery of cell wall deficient bacteria. We later learned that Lyme Disease, also has a growth cycle beyond the simple Spirochete. It has a Cyst form: doesn't cause symptoms in most patients. It has the spiral form -- or Spirochete (it is mobile), and finally the L-form.
Antibiotics do not work on the L-form without forcing conversion. So how do we get a pathogen to avoid going into cyst form or L-form (antibiotics and many herbal therapies create this conversion)?
Rife Machines (and) Marshall ProtocolWell another patient reminded me of the Marshall Protocol and Rife Therapy. I recalled Rosner talking about Benicare in 2005 "Lyme Disease and Rife Machines:, but it hadn't clicked yet. The compatibility issue was still a concern. Bryan has since confirmed they are compatible and far more comprehensive than either done alone.
Cell wall drugs works great in patients who have an untreated infection -- without co-infections, because the load of the infection actually being reduced significantly and cyst conversion happens rapidly (cysts don't cause symptoms as far as we currently know) Relapse is simply a result of a few factors we know of, but especially the cyst form, and L-forms which appear when the bacterium is exposed to hostile events. So why do protein synthesis inhibiting drugs like Tetracycline work in me? Cell wall deficient bacterium respond partially to inhibitors. So patients with a high load of this form or cyst form, would receive only a minimal "partial" response. Hence, the gain of only 5-10% for me with Tetracycline. I'm a non-responder to Minocycline at 200mg taken for 2 months, and a "partial" responder to Doxycycline, but only temporarily.
]Why Only Partial Response or No Response
Bryan Rosner writes:
"When Vitamin D levels are appropriately reduced (which leads to decreased production of 1,25-D), antibiotics not only work better, they can become hyper-effective. So effective, in fact, that only a minuscule dose is needed to elicit powerful antibacterial action. This outcome is seen even in patients who have previously failed to respond to high-dose antibiotic therapy. For example, someone who previously experienced only mild benefits when taking 300mg/day of minocycline will experience dramatic benefits during use of the Marshall Protocol even though doses as low as 10mg/day may be used.
The amplified effect of antibiotics has a twofold benefit. First, it means that antibiotics will actually start to work for people who had not previously responded to them; and second, it means that antibiotic side effects are kept to a minimum during use of the protocol because doses can be kept low. This is great news! The Marshall Protocol solves two of the primary problems facing Lyme Disease sufferers: the marginal effectiveness of antibiotics and the toxic side effects associated with their use. Of course, increased effectiveness of antibiotics also means that herx reactions can be much more severe, thus, special care and caution is necessary. "
So while we've all talked about the Marshall Protocol at various points, I haven't seen this discussed in this context.
[b]Maybe It'll Work For Me or Others[b] We're talking about patients with multiple chemical sensitivities -- patients who are allergic or can't tolerate most antibiotics, and people who have entire failed therapies -- oral, herbal, IV, hemopatic, and onward.
My excuses for not turning to Rife sooner are for the reasons previously mentioned. I had to try things in accordance with reducing symptoms and in an order. However, if I'm only reducing symptoms and not solving the underlying issue fully, I won't see the full recovery I'm looking for.
I have a few ideas of what direction I'll take, but this thread has been incredibly helpful. I'm still looking for more data.
Posted by sixgoofykids (Member # 11141) on :
Yes, these are embyronic stem cells, but they were donated by a family who miscarried and the doctor clones the cells, so the doctor does not need an ongoing source of stem cells.
To me, lowering Vitamin D is illogical. Fixing a balance between D2 and D3 is logical, but lowering Vitamin D makes no sense in light of recent research that shows that it helps the immune system even with fighting cancer. It also seems most of us are Vitamin D deficient.
The Marshall Protocol boards kick people off who say something negative about it, so I don't know where to really get a balanced idea of how well it works. I haven't seen people here shouting that it worked great for them like people do for ILADS protocols or rife.
I got the idea that people used rife for maintenance much like I use the photons for maintenance. Not because I feel bad, but to keep it in remission. I don't want this to come back. I treat monthly to prevent relapse, not really to feel better.
Posted by btmb03 (Member # 18394) on :
"I get plenty of exercise (Not enough stretching though), but I ride my stationary bike for about 1 hour a day. I might benefit from doing it earlier instead of a few hours before bedtime. I also find I'm far more stressed when I play my Xbox near bedtime."
I fully understand that you need to improve MB, but I am impressed by the amount of exercise you are doing. Riding a bicycle for 1 hr?? That alone means you have a pretty good aerobic threshold.]
Have you ever had a bicycle ergometry done? (V.O2 Max test) testing for oxygen uptake? If you're doing that much aerobic activity (even at a slow pace) you doing extremely well. There may be other issues that you're obviously trying to figure out and I hope and pray that you do.
However I think it is important to see what you *are* able to do, like write amazing posts (just skimmed thru this one, can't read each and every post) so intellectually and cognitively you are also doing fairly well just based on what you're telling us.
Sometimes a lot of patients don't realize how far they've come. A subjective number representing a % of functioning is not necessarily an accurate indication of where the patient is at.
In any case I wish you luck and better health!
Posted by METALLlC BLUE (Member # 6628) on :
quote:sixgoofykidsI think Bicillin would probably be better. He himself used Bicillin to treat his own Lyme Disease. I also liked Omnicef, but because of GI trouble took Cedax (same family) instead. I was not willing to do Bicillin. I was very thin when I tried it (one time) and it just didn't work out for me. I also bruised very, very easily at the time. You do need high dosing on the amoxy. I did 7500 mg per day.
I did exceedingly high doses and a long duration of IM Bicillin. All it did was leave scar tissue on my rump. The Amoxy seems less appealing now.
quote: sixgoofykidsKnowing what I do now, I think hitting the Lyme is the biggest thing. I still had bart and babs last time I was muscle tested, which was in April, but I was very functional ever since I returned from Germany the Nov. before that. The babs and bart weren't as significant with the Lyme gone. Though I think with abx treatment it's a good idea to treat coinfections .... I think ILADS experience has shown that.
Who did your muscle testing?
quote: sixgoofykidsMaybe see if you can make appts periodically with him. He would try to switch me over to herbs, but we always ended up going back to abx as soon as I declined.
I think he will be far less receptive to most of my ideas unless they involve the IV, and or other drug therapies -- aside from drinking tree bark (which is what he wants me to literally do for 3 months). I'm not certain what I'm going to do, or what I'm going to say to them when I go back for my appointment. I know I'm trying hard to avoid that IV. I want more than just "ok." I don't want to have to keep sticking a PICC or Port in my chest either when I relapse, which appears to be inevitable based on patient reports.
quote: sixgoofykidsYes, I do think it takes multiple cycles, and also multiple treatments. I never saw one roundworm with Humaworm, but saw about 30 of them on Enula.
Dr. Natura is about cleansing the colon. It also has cleansing herbs for the liver, kidneys, etc. Check out their website, it has impressive herbs in it.
Ok, that's helpful.
quote: sixgoofykidsHerxheimer horrible. We presumed the pain to be from the infection. I talked to it about it on the phone one night because I was concerned about it. It ended up being the infection as the pain started lifting and went away completely during the 3 month period. I felt really good, had a clear head, and was highly functional at that point. It lasted for a while, but then babesia creeped in again. The bart seemed to stay away.
So it really makes sense as of presently to go after the Bartonella and Babesia in my case. I'm thinking a three month cycle of Levaquin, combined with Babesia therapy and Parasite therapy would be a good preparation for following Rife (with perhaps additions).
It's a reasonable idea I think.
quote: sixgoofykids A lot of what we do creates toxins. I found the enemas gave me relief. I did them daily almost all through abx treatment. On really bad days my kids would make the coffee for me and bring it upstairs because they could see the difference themselves. He is supportive of them, you can ask him about them. He doesn't outright recommend them (LLMD's have to be careful, you know), but he was supportive of me doing them.
Yeah he's talked about them and given his opinion. I know "exactly" where he stands on it and trust me, he gave me TMI during a few appointments. Funny really.
quote:sixgoofykidsHere's the Hulda Clark website. http://tinyurl.com/m45nd8 You don't have to buy a product from them, it's olive oil, grapefruit juice, epsom salts, and orthinine. I did them two weeks apart, except for a couple that I waited a little longer.
Dr. Natura is capsules and fiber in the morning and tea in the evening. The first time you do it, you're supposed to do it for three months. It's a more expensive one.
Ok, great. Good ideas for potential future cleansing.
quote:sixgoofykidsOr maybe even do the follow up work with the PE1, which is less expensive. Some who can't get the Bionic are using it with good results. You do need follow up work after the Bionic.
Gotcha.
quote: sixgoofykidsBasically, it's addressing a mineral deficiency that Dr. K has found 80% of Lyme patients have. There are a few threads here on it. Pyroluria, kryptopyrroluria threads. Also, check out drrandy.org, then click on articles, he's written a good article on it.
Strange, I've heard about it but don't understand what Pyroluria or Krypto are. Is it a state of disease or a consequence of Lyme?
quote: sixgoofykidsIt is nice to be living life again and only thinking of Lyme when I'm on here answering questions. [Smile] I'd love to have you in one of my classes! I taught my husband today ... my first guinea pig. He did great, but I found it hard to teach! I'll get it figured out though.
Teaching isn't easy. Sadly it's one of my strengths. All the things I'm good at are things I don't like doing. All the things I suck at, are things I enjoy. Go figure?
quote: JamesNYC: Wow, I am impressed. I'm not nearly as sick as you and you are FAR more organized than I am!
The sx that stood out are SO typical of lyme and babesia. And, those two work together to suppress the immune system for the other.
Unfortunately the symptoms are typical of a lot of other things too, which given my track record with co-infections, who knows what else is hanging around between those two little *******s. This is why I'll focus on the Lyme, Babesia, Bartonella, Parasites, and target each one, to see which treatment works. I like breaking things down so I can understand as much as possible. I still won't have objective data, but it still will be useful.
quote: JamesNYC:Babesia sx include many of yours that you rate as "high" and "moderate". They included, shortness of breath, fatigue, night sweats, difficulty sleeping/insomnia, depression, weight gain, and fever. The shortness of breath and sweats have improved, so that's great.
Yeah, now if only all the others would improve. Another issue is that of relapse. Getting better is one thing, but entirely eradicating it is another that I have to figure out. We all do.
quote: JamesNYC:I guess stay on it (I *think* you're still on Malarone). It can take a very long time depending on the severity of the infection, and yours seems severe. Mepron is supposed to work better, as you know, but whatever works for you is best.
Yeah, Malarone is what made the difference, but then again it could just be that the Mepron was the forerunner to the progress. Afterall, sweats did significantly increase with the Mepron, but the improvements never came and that is why they switched me. I can't say more than that. Other antibabesiosis treatments will be needed, I'm just not clear yet on that one. I will be soon though.
quote: JamesNYC:(Babs has been my big problem, so I'm partial to getting rid of it. Many of my sx I thought were from Lyme were actually Babs).
This is a great thread, btw. It lays out every treatment option there is.
God, I hope something finally works for you. I think it's great that even with all your illness you have a GF! That's awsome! [Wink]
I'm hoping we can get all the options by the end, and then on the last page I can collect all the data, simplifiy it, and present it coherently so they can be listed and explained simply.
I am certain I'll find a solution, I'm just not sure where. The girlfriend thing is unbelievable. Awesome relationship, but we have a tough time coping with each others health problems. It's exhausting and so we both needed a break. She went home to be with her family. I'm burned out heavily to the point where I've needed about a month or so of rest. Having been delt the "Options running out" card by the LLMD contributed to my depression and burnout.
quote: keltyl Metallic....Apologize for the name, I really did know that but sure you know what a Lymetard is, especially for me when it starts getting to be late afternoon.
Don't worry about it. Sorry to hear about the IM B not working for you either.
quote: CD57 One note re Levaquin: my current LLMD says that it actually hits Lyme as well as bart.
Great, I'll possibly get a break from the Lyme too if it works somewhat. I'm really not sure what it'll do actually, but it's on my list of probable treatments coming up.
Yes, these are embyronic stem cells, but they were donated by a family who miscarried and the doctor clones the cells, so the doctor does not need an ongoing source of stem cells.
That's positive news.
quote: sixgoofykidsTo me, lowering Vitamin D is illogical. Fixing a balance between D2 and D3 is logical, but lowering Vitamin D makes no sense in light of recent research that shows that it helps the immune system even with fighting cancer. It also seems most of us are Vitamin D deficient.
Bryan Rosner says it's counterintuitive, and while I certainly don't understand it completely, I do have to wonder about the hypothesis of the possibility.
quote: sixgoofykidsThe Marshall Protocol boards kick people off who say something negative about it, so I don't know where to really get a balanced idea of how well it works. I haven't seen people here shouting that it worked great for them like people do for ILADS protocols or rife.
I don't think it has a balanced view, but the good aspect I can see is that it's compatible with Rife, and Rife we know can work. I already avoid the sun and have had low Vitamin D for years -- even with lots of supplementation, so I hardly am concerned about it. The objectivity would be nice, but the possibility is nicer that it could be a potential avenue. I've heard of a number of reports (from people I know) who did do well on the protocol. I also know people who failed to respond.
quote: sixgoofykidsI got the idea that people used rife for maintenance much like I use the photons for maintenance. Not because I feel bad, but to keep it in remission. I don't want this to come back. I treat monthly to prevent relapse, not really to feel better.
Yeah, I understand what you mean. At this point, I've nearly passed all the scientifically supported avenues. The MP has "some" science behind it that can be challenged further before doing anything. I'm looking for less risk, lower cost, and potentially better results from whichever treatment I do. The IV just doesn't make sense. If I fail the therapies in the order of lowest cost to me, lowest risk etc -- I move up to higher cost, lowest risk -- and further, high cost, high risk.
Whatever it takes.
[ 11-22-2009, 01:19 PM: Message edited by: METALLlC BLUE ]
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by METALLlC BLUE: I did exceedingly high doses and a long duration of IM Bicillin. All it did was leave scar tissue on my rump. The Amoxy seems less appealing now.
That was what I said ... I work way to hard to keep lumps out of my @$$ to use a drug like that! Amoxy was very unappealing.
quote: Who did your muscle testing?
I'm sorry, I can't say. It was part of the deal. Someone highly trained.
quote: I think Dr. H will be far less receptive to most of my ideas unless they involve the IV, and or other drug therapies -- aside from drinking tree bark (which is what he wants me to literally do for 3 months). I'm not certain what I'm going to do, or what I'm going to say to them when I go back for my appointment. I know I'm trying hard to avoid that IV. I want more than just "ok." I don't want to have to keep sticking a PICC or Port in my chest either when I relapse, which appears to be inevitable based on patient reports.
In rereading what I said, I realize I was unclear. it was when my health declined that he'd put me back on drugs. At the point we were discussing IV, I was actually open to it, but I see your point.
quote: So it really makes sense as of presently to go after the Bartonella and Babesia in my case. I'm thinking a three month cycle of Levaquin, combined with Babesia therapy and Parasite therapy would be a good preparation for following Rife (with perhaps additions).
It's a reasonable idea I think.
Sounds reasonable to me. You have to go with your gut. Listen to your body.
quote: Yeah he's talked about them and given his opinion. I know "exactly" where he stands on it and trust me, he gave me TMI during a few appointments. Funny really.
LMAO! They aren't as bad as they sound and they really help a lot of people.
quote:Strange, I've heard about it but don't understand what Pyroluria or Krypto are. Is it a state of disease or a consequence of Lyme?
I think it can most likely work either way. I think for me it came first. I really seem to have a family history of it symptom-wise, though I'm as likely to convince them to look into this as I am to have them realize their other symptoms are from Lyme.
They don't really know for sure. Are people with this condition more likely to get Lyme or does Lyme cause this condition?
quote: Teaching isn't easy. Sadly it's one of my strengths. All the things I'm good at are things I don't like doing. All the things I suck at, are things I enjoy. Go figure?
It's a strength for me, too. It's just taking pilates classes and teaching them are sooo different!
Maybe you like a challenge?
Posted by coltman (Member # 21272) on :
Her blog is great read overall and details her experience using HESC for treatment of lyme
Treatment looks costly at first glance till you realize that same services in US would cost you 10 fold (2 month in hospital with daily procedures , tests and MRIs)
Posted by METALLlC BLUE (Member # 6628) on :
quote: btm03I fully understand that you need to improve MB, but I am impressed by the amount of exercise you are doing. Riding a bicycle for 1 hr?? That alone means you have a pretty good aerobic threshold.]
Have you ever had a bicycle ergometry done? (V.O2 Max test) testing for oxygen uptake? If you're doing that much aerobic activity (even at a slow pace) you doing extremely well. There may be other issues that you're obviously trying to figure out and I hope and pray that you do.
I have not had that test done. Yeah, I got past the exercise induced debilitating fatigue to some extent. However, it comes back when I try to use certain muscle groups "anaerobically". Biceps, Upper Legs and shoulders seem to bring on the symptoms fastest. I've never known why. So weight training can trigger it. It's strange how functional I must seem given all the contradictory ways my body works, but the one real indepth issue is that I feel really bad doing various daily activities -- even if unlike some patients I can force myself to do them. Doing things makes things worse though, so I don't force anymore. I've come to the stark conclusion that pushing only leads to more suffering in my case and I'm uncomfortable enough at rest.
Some activities, like the bike -- don't instigate symptoms unless I push beyond that 1 hour (or if I up the intensity) then the post-exercise debilitation would occur. If you really want to see a contradiction, think about this. I play X-box *while* I ride the bike. It took me about 6 months to get used to sitting upright peddling while losing myself mentally in a game. Multitasking, right? Yet why in the world can't I multitask in regular activities?
The symptoms often happen in the CNS. Dizzyness, crippling fatigue, feeling like you're going to pass out -- those types of feelings. Vision becomes blurry and whitish looking etc.
I could run 5 miles if I wanted to, but the suffering it would induce would be enormous and my recovery time would take literally about two weeks or longer to heal.
So, the disease has changed with a lot of Tetracycline, (Possibly IV V, 2 week Bactrim, and 2 Week Levaquin) and now Malarone, but I still can't get past 35-40%. I don't leave my house because it makes me feel worse. It's like the more stimulation of sound, light, cars, wind aggravate me and my frustration tolerance drops. I come moody faster and become quick to anger. In a controlled environment, like my living room, in loose fitting clothing, I feel much better.
I save all my energy, everyday, so I can ride my bike and just do the chores I need to do -- which I haven't been doing lately because I've been so fatigued.
quote: btm03However I think it is important to see what you *are* able to do, like write amazing posts (just skimmed thru this one, can't read each and every post) so intellectually and cognitively you are also doing fairly well just based on what you're telling us.
There is no doubt I've come a long way, but a long way for me was the line between death up to 35%. Tetracycline would boost me another 5-10% if fortunate. That leaves a lot of areas still crippled. For example, I write well, but I can't "write" well with my hands. My dexterity and muscles twich and cause me to lose control of the pen, so I have to grip it hard to make a signature. Same with guitar playing, and video games. Standing causes stabbing pains in my ribs. My hands get icy and my feel too. My neck feels like a tightened spring, stiff and achy, along with my other joints.
Yet, I can think through "some" things well. However, when I had testing done across the board, I had deficits primarily in the temporal lobe and prefrontal lobe, worse on the left than right. The Brain SPECT scans are clear now, and yet I still have many of the same symptoms. I could write fine online before I was treated -- even at the worst of my illness, but I still can't add or subtract easily. I have trouble with visual spatial recognition, and retrieval of information -- like most of you.
It's like my brain compensated, allocating skills to certain areas while other areas remain deficient. My short term memory is poor. I often forget my own phone number when I call an office and they ask me "What number can I reach you at?" I got a cell phone because I'm on SSI, and I've had it for about 6 months now, and I don't remember the number. I figure I'll just use it for outgoing emergency calls anyway.
It takes me ten times longer to learn material than the average person, but because I'm so persistent, I study ten times harder to encode and take in information. I've been like this my whole life. I can't draw or paint, or do anything that requires creative visual material. When I try to see an image in my head of something, it's usually grayed out, and blurry -- difficult to visualize anything.
It's little things like that which most people don't notice. Or the severe depression, insomnia and other central nervous system problems. The abnormal mood changes and frustration tolerance.
Some parts work well, but then you have all these other things wrong. I look healthy aside from the gut that won't go away no matter how much I exercise and diet, and the balding (which doesn't run in my family) from the inflammation and the huge raccoon eyes, no matter what, even if by chance I do get reasonable sleep (which is rare).
It's like, most of my symptoms that allow me to walk and talk are "tolerable" -- I have all these other high, or severe symptoms that cripple other areas.
Oh, and typing allows me to edit. Without that, I'd sound like a moron. I'm sure others can relate. I can't spell worth a damn.
quote: btm03Sometimes a lot of patients don't realize how far they've come. A subjective number representing a % of functioning is not necessarily an accurate indication of where the patient is at.
Maybe not, but I'm far from well, I know that. I'm not bedbound most days, but I am homebound most days.
quote: In any case I wish you luck and better health!
Thank you.
Posted by METALLlC BLUE (Member # 6628) on :
quote:sixgoofykidsThat was what I said ... I work way to hard to keep lumps out of my @$$ to use a drug like that! Amoxy was very unappealing.
I'm sorry, I can't say. It was part of the deal. Someone highly trained.
I hear ya. I probably know the person too. Give me a clue? East coast or West Coast?
quote: sixgoofykidsIn rereading what I said, I realize I was unclear. it was when my health declined that he'd put me back on drugs. At the point we were discussing IV, I was actually open to it, but I see your point.
Sounds reasonable to me. You have to go with your gut. Listen to your body.
I see. Working it out in my head is tough since new information is constantly coming in. Once it's all settled though, I'm sure I'll know the right route.
quote: sixgoofykidsLMAO! They aren't as bad as they sound and they really help a lot of people.
I think it can most likely work either way. I think for me it came first. I really seem to have a family history of it symptom-wise, though I'm as likely to convince them to look into this as I am to have them realize their other symptoms are from Lyme.
They don't really know for sure. Are people with this condition more likely to get Lyme or does Lyme cause this condition?
It's very strange. I'll look into it. Good news is I don't have the "genes" that are often implicated in causing ongoing Lyme Disease problems.
quote: sixgoofykidsIt's a strength for me, too. It's just taking pilates classes and teaching them are sooo different!
Maybe you like a challenge?
I think so. I'm sure you'll get the hang of it. In a way it's probably undermining your own techniques that you've been used to. You have to focus on others and that adds a huge new dimension to your own workout. I think you're right about the challenge. Unfortunately I never overcome it since all those areas are ones where my Lyme (and others) interferes with my ability to master the task. Guitar for example. I can't get past this place I've been stuck for about 5 years now. I finally -- after a year of trying -- learned how to play and sing at the same time, but I can only play rythmn, and if it's even slightly out of sync vocally, I can't perform it.
It's **** like that, and I think It's my "smaller" version of pushing, like so many patients do physically.
Posted by TerryK (Member # 8552) on :
I haven't read through all the recent posts on this thread so forgive me if I"m repeating anything that's already been said.
I think the crux of the matter for many of us is immune system functioning. We need our immune system in Th1 mode.
Some infections can make your immune system tip over to a Th2 response and we need a Th1 response to help get rid of lyme. One very helpful book that explains most of that is Dr. S's book, "The lyme disease solution". http://www.lymebook.com/lyme-disease-solution
To illustrate the need for a th1 response, there is a mice study that showed that sub-toxic levels of mercury make it difficult to get rid of lyme because of it's affect on the immune system. They specifically mention that you need a Th1 response to help get rid of borrelia. I believe exposure to mold, including mold in food is another immune system issue. Actually, according to some of the studies that I've read, seems like anything that depletes glutathione can tip the immune system over to th2. Here is the mouse study. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/57277?
If you haven't already read it, consider reading "Insights into Lyme Disease Treatment" By Connie Strasheim. It's interesting to read what each doctor thinks works best. http://www.lymebook.com/insights-book-connie
I think parasites are a big issue and if you have costant exposure to mold you will likely not get well. I have both of those issues and am dealing with them now. I'm seeing good improvement with another round of babs treatment and anti-parasitic treatment. I think the key is finding the issue that is making it hard for *your* immune system to function effectively.
Seems like the genetic issues are huge for some of us too probably because of their effect on glutathione. AND if you are in treatment, and you are of the genetic type that does not make enough antibodies to get rid of borrelia and/or mold toxins, then you must continue to take binders. IF you have these problems it is an on-going treatment, not one that you can treat and be done with. One or 2 doses per day is not enough. Minimum 3 doses per day is needed from what I've read and from my own experience.
One last note. I'm not sure why you are waiting to treat yourself with rife. My neuropathy started to come back this past 6 months despite my hefty abx treatment protocol. Rife helps a LOT. The burning feet start to come back, I rife and within a few days it's gone. Rife can be used to move your lymph system and to help with other infections. Many other things too.
I think I've mentioned this before but muscle testing of some kind is very valuable. It's not perfect but can be extremely helpful.
I'm hoping that you find the answer for yourself and your girlfriend. I'm still looking for answers myself. The more reading I do, the more I think the th1 functioning of the immune system is critical. I don't think IV abx is going to solve the problem if your immune system is not functioning properly.
Terry I'm not a doctor
Posted by TerryK (Member # 8552) on :
"We show that in all cases, GSH depletion inhibits Th1-associated cytokine production and/or favors Th2-associated responses."
Terry I'm not a doctor
Posted by greenbow (Member # 21463) on :
i definitely feel your pain..physically and frustration wise. i'm looking for the "answer" to all this too.
Posted by METALLlC BLUE (Member # 6628) on :
Can someone instruct me on the proper frequencies to attempt should I begin this process with Rife therapy?
Are the numbers in Bryan's Rife book appropriate, or do you have specific ones you use that have worked?
Posted by TerryK (Member # 8552) on :
Personally, I use the CAFL and muscle test for the right frequencies. Dan Bergy can probably help you determine which ones might work for you.
For the burning feet I personally need rickettsia frequencies but someone else will need frequencies for whatever is causing their problem.
Some of the frequencies that I've needed throughout have to do with viruses. Also lymph movement and lysine stimulation. Once in awhile I need lyme but I'm already on pretty heavy treatment for that so it seems to be covered pretty well which may be why I don't muscle test that I need lyme frequencies very often.
Start VERY slow as some people have a big herx. Some say 1 minute is long enough until you know how you respond. With muscle testing I do very long sessions - yesterday I did 2 1/2 hours. I think that is unusual and not the experience of most people.
Bryan's argument not to use rife and abx together does not make sense to me. He contends that abx will drive borrelia into cyst form. From everything I've read, anything that threatens borrelia drives it into cyst form. If rife kills borrelia, that is a threat. Just my opinion and again, I base my rife treatment on muscle testing and I find via muscle testing that it is perfectly fine for ME to use the 2 treatments together.
edited to add: I have Bryans book but I don't use it to pick frequencies so I can't tell you if they work or not. Again, it will depend on what your specific issues as to which frequencies would work best for you.
Terry
Posted by keltyl (Member # 14050) on :
Haven't had time today to keep up with this thread, but I did ask J about muscle testing and was poo pood. I also mentioned rifing quite awhile back and was told they "weren't fans of rifing". Of course that doesn't me if the point comes I want to try it, I will.
Posted by TerryK (Member # 8552) on :
I've talked to some doctors who use muscle testing and feel it is valuable and others who don't. To each his own. It works for me. I don't bother trying to convince a doctor one way or the other. I never bring it up at all with some because it is clear that they would not be open to it. I think many of them have no experience with it and simply don't believe in it.
Same with rife. Some have patients who have success stories and thus they think it might be useful. Others don't. shrug
Terry I'm not a doctor
Posted by glm1111 (Member # 16556) on :
MB...FYI...Just thought i would add this info as a possibility as to why you may have fatigue when you use a certain group of muscles. This used to happen to me. Round worms can invade and travel through muscle tissue.
Google " worms in muscle tissue"
They also migrate to the lungs. I had severe asthma (rush to the hospital via ambulance asthma) for 40 yrs until I started using antiparasitics. My asthma and breathing problems are completely gone.
These parasites can do a lot of damage especially when the immune system is not functioning properly and leaves us open to a parasitic hyperinfection.
I feel them wiggle and die daily in my muscle tissues so I know they are/were there. Hope you find an answer soon,
Gael
Posted by coltman (Member # 21272) on :
quote:Originally posted by TerryK: I think the crux of the matter for many of us is immune system functioning. We need our immune system in Th1 mode.
Some infections can make your immune system tip over to a Th2 response and we need a Th1 response to help get rid of lyme.
I'm hoping that you find the answer for yourself and your girlfriend. I'm still looking for answers myself. The more reading I do, the more I think the th1 functioning of the immune system is critical. I don't think IV abx is going to solve the problem if your immune system is not functioning properly.
Thanks for Great links Terry!
And I am myself reached conclusion that Th1 response is critical for combating chronic infection. But what is not clear is the exact nature of immune dysregulation.
On the other hand it seems MS and neuro symptoms are most likely caused by Th1 responce (which is inflammatory in nature and is characterized by production of macrophages and lysis of infected cells)
So its not per se lack of th1 response. It is that its for some reason ineffective in eliminating chronic infections . One of the mechanisms is subversion of macrophages themselves- it is been documented that intracellular bacteria inhibits cell apoptosis and therefore able to stay in the cells much longer and reproduce there, s it also can subvert detection mechanisms preventing recognition of infected cells.
Posted by coltman (Member # 21272) on :
quote: Bryan's argument not to use rife and abx together does not make sense to me. He contends that abx will drive borrelia into cyst form. From everything I've read, anything that threatens borrelia drives it into cyst form. If rife kills borrelia, that is a threat. Just my opinion and again, I base my rife treatment on muscle testing and I find via muscle testing that it is perfectly fine for ME to use the 2 treatments together.
Well the thing if the rife works how they think it works (and it if works at all) it destroys spirochette immediately during rifing session (by breaking its cell wall). So it doesn't have a chance to convert to cyst form
Spirochette converts into cysts when it starts sensing hostile environment - like elevated level of harmfull (to it) abx in the blood. ABX do not destroy bacteria immediately - they take time to work, so it has time to convert
All in all if rife works I think his argument makes perfect sense.
So main reason to not use abx during rife is to allow bb come out and be in spirochette form which is only form vulnerable to rife. I dunno though if intracell abx cause conversion to cyst - that a topic to be researched if some abx do not cause it it makes perfect sense to use them
I do know though which abx definitely cause the conversions to l-forms and cysts- cell wall inhibitors like cephalosporins or penicillins.
Posted by AliG (Member # 9734) on :
I haven't read this thread in it's entirety. I've scanned your Sx & Txs (as best I could).
I second James' opinion in that I see persisting Babesiosis and Lyme.
I had the hardest time tackling Babesiosis but I do think I finally did.
IV Clindamycin IV Azithromycin Mepron Diflucan (all 3 weeks on, one week off - repeated 3 times) Artemesiae (1 week on, three weeks off, repeat 3 times)
During 3rd week (before break)- 3-5 days of Flagyl(metronidazole)-depending on tolerance & Questran (cholestyramine) to absorb toxins
That seemed to have eliminated the Babs symptoms.
Just before doing that I did Biaxin (4 mos) along with Ceftriaxone(3 mos added in after 1 mo) & Zhang's herbs, during the last week, I dropped Biaxin & added in Flagyl & Questran.
I think that made SIGNIFICANT progress against the Lyme during that Tx.
Had I taken out the Babs before that, it might have done the trick, but I believe that the Babs still protected the Lyme to some degree.
Since that last IV Lyme tx & then taking out the Babs, I've been on Mino, Rifampin, & Diflucan and had a MUCH slower creeping back of symptoms than with previous Lyme Txs.
A recent dental appointment sent me into a flare & I've now added a fairly high dose of Amoxicillin to the mix. That seemed to settle the flare.
I don't know if it will pull me back out of the creeping sx. I guess time will tell.
I'm not sure what direction we'll go in at my next appt, but I don't think it's going to be weaning me off abx like I had been hoping. Not just yet anyway.
If I were you, I'd try to lay off the aerobic exercise & aggressively tx Babesiosis for a few months. I think it's the Babs causing you to have problems with non-aerobic exercise.
The non-aerobic exercise should be starting with stretching & resistance no more than 1 hour every other day, and working up to light weight & gradually increasing but still no more often than every other day until you get the Lyme taken care of.
I almost forgot..... I also did a month of Bactrim in between the IV Lyme & IV Babs Txs & it may have been helpful for me because the Sx didn't come back during that time.
I don't recall reading why you couldn't take it but I have no way of really knowing whether it made a difference or if I would have still felt good without it.
If you think parasites/worms may be an issue....
Zhang's Allicin (best taken with chlorophyll capsules if you plan to keep your girlfriend unless she takes them too ), + raw pumpkin seeds (taken first thing in am & every 6 hours after for a few days), + papaya (I get the large Miradol Papaya & eat 1/2 per day) +/- & bitter melon(if you can stand it (ICK) I think Zhang's has capsules but I haven't tried them) should address them.
I'll try to go back & re-read, but I wanted to post this in case I didn't get a chance & forgot about it later.
Ali
Posted by AliG (Member # 9734) on :
Pardon my ignorance, but I really don't get the whole "rife" thing.
If this is the case:
quote:Originally posted by coltman:
Well the thing if the rife works how they think it works (and it if works at all) it destroys spirochette immediately during rifing session (by breaking its cell wall). So it doesn't have a chance to convert to cyst form
wouldn't one treatment cure you?
Perhaps I should go try to read up on rife.
Posted by TerryK (Member # 8552) on :
Coltman - thanks for the links and the info. I didn't know about MS and neuro symptoms and a Th1 immune response. I think when either Th1 or Th2 becomes dominate it can be hard to get rid of certain infections. I'm far from an expert although it is an area that I plan to look at more as time and energy allow.
I've recently found a plant (PawPaw) that seemed to help me quite a bit. The leaves work on malaria but I've been using a product made from the twigs. Most interesting thing that I read about it is that it downregulates ATP (energy production) of abnormal cells. It's used for cancer.
We know that babesia, bart and babs can all live inside the cell. It's possible that Paw Paw reduces the energy available to these organisms which would drive them out of the cell where maybe they can be killed or perhaps they die in the cell?
Based on the thought that it down-regulates cellular ATP production I initially thought I might actually be more fatigued but just the opposite happened. I assume I have a lot of abnormal cells that are sucking up my energy?
I'm still looking into it and can't recommend it for anyone else because I don't know enough about it yet.
Here is the description of the product that I take. Paw Paw Cell-Reg� selectively targets specific cells to enhance the overall health of the body.
Paw Paw twigs contains acetogenins-active compounds that modulate the production of ATP in mitochondria of specific cells, which affects the viability of specific cells and the growth of blood vessels that nourish them.
A recent clinical study with over 100 participants showed that the paw paw extract, containing a mixture of acetogenins, supports the body's normal cells during times of cellular stress. Paw Paw Cell-Reg is a valuable tool in strengthening and supporting the immune system.
Only those who desire to target specific cells should take this product on a regular/daily basis.
Terry I'm not a doctor
[ 10-02-2009, 06:48 PM: Message edited by: TerryK ]
Posted by TerryK (Member # 8552) on :
AliG & Coltman - as far as I know, no one really understands how rife works.
I doubt that it inhibits formation of cysts but who knows?? Even if it did, it would seem unlikely that a person wouldn't have all the forms of borrelia in their body if they've been infected for very long but again, who knows? Each cyst supposedly can break open and release up to 5 borrelia. You can see how one would have to kill all cysts in order to get rid of the infection entirely.
In any case, it works for me. It's not perfect, it's not the only thing I need. It is another tool that I find very helpful.
I avoid spending time and energy trying to convince anyone. There are many discussions of this nature going on in other places. I just wanted to convey my personal experience with it in case it was helpful.
Terry I'm not a doctor
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by METALLlC BLUE: ]I think so. I'm sure you'll get the hang of it. In a way it's probably undermining your own techniques that you've been used to. You have to focus on others and that adds a huge new dimension to your own workout. I think you're right about the challenge. Unfortunately I never overcome it since all those areas are ones where my Lyme (and others) interferes with my ability to master the task. Guitar for example. I can't get past this place I've been stuck for about 5 years now. I finally -- after a year of trying -- learned how to play and sing at the same time, but I can only play rythmn, and if it's even slightly out of sync vocally, I can't perform it.
It's **** like that, and I think It's my "smaller" version of pushing, like so many patients do physically.
Actually, with Pilates you don't work out with the class because you need to be free to help, so it doesn't affect my workout. What's challenging is learning to tell others what to do when I'm not doing it myself and learning to put it into words.
I play flute at Mass every Sunday. When I was sick, I could only play the melody. The harmony if it was a pretty good day. Now I can play the flute part which is typically different than what everyone else is playing/singing. I think a big part of the block with music is the Lyme, at least it was for me.
Posted by springshowers (Member # 19863) on :
Here is a simple and short page that talks about how it was developed and how it works.
This site also compares and talks about other energy devices from a practitioners and patients perspective.
Terry thanks for that info, the pawpaw sounds really intriguing. I'm going to go check that out!
Spring thanks for that link. I'll check that out too. It sounds like I might find some answers there.
Sorry to sideline your thread MB, with my questions Shame on me Posted by TerryK (Member # 8552) on :
Thanks for the link Spring. I think there are a number of theories about how rife works. Rather than divert this post, I'll link to AliG's post where she asks about rife. Good thinking to start a new post AliG. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/86466?
Hopefully the pawpaw will turn out to be something useful for us. So far I'm pretty happy with it but I've only been taking it for about a month and at low doses.
Terry
Posted by oyvey (Member # 11581) on :
Some of your emotional and mental symptoms seem very close to those of my family and two friends who all have had severe Bart. The six of us tried Cipro, Factive and Rifampin and doxy but nothing worked except levaquin.
One thing about Bart is that it seems to respond quickly to the right antibiotic for the individual but if it isn't taken long enough--if you haven't really decimated the bacteria-- Bart comes back very quickly, and it is soon just as strong as ever.
This is a bacteria that replicates much faster than either the spiro lyme or the parasite babesia.
I have known a couple of other people like us who couldn't get anywhere with any treatment for Bart beside levaquin, and their improvement in mental and emotional stability was also rapid. So if you were improving with the levaquin and didn't take it long enough you would probably relapse quickly and then feel as if you hadn't gotten anywhere.
I also read about a case just posted in the blog by lymeMD about a patient who wasn't improving on the lyme treatments given. It took many tries until he finally found the right antibiotic cocktail for her but now she is improving.
So God Bless and keep on keepin' on. My husband has had terrible gastro problems with lyme for over a decade--much pain and debilitation-- and he kept asking about rifaximin Finally he got some prescribed for him and he was tremendously improved within weeks. Amazing.
Posted by METALLlC BLUE (Member # 6628) on :
quote: TerryK Personally, I use the CAFL and muscle test for the right frequencies. Dan Bergy can probably help you determine which ones might work for you.
For the burning feet I personally need rickettsia frequencies but someone else will need frequencies for whatever is causing their problem.
Some of the frequencies that I've needed throughout have to do with viruses. Also lymph movement and lysine stimulation. Once in awhile I need lyme but I'm already on pretty heavy treatment for that so it seems to be covered pretty well which may be why I don't muscle test that I need lyme frequencies very often.
Start VERY slow as some people have a big herx. Some say 1 minute is long enough until you know how you respond. With muscle testing I do very long sessions - yesterday I did 2 1/2 hours. I think that is unusual and not the experience of most people.
Bryan's argument not to use rife and abx together does not make sense to me. He contends that abx will drive borrelia into cyst form. From everything I've read, anything that threatens borrelia drives it into cyst form. If rife kills borrelia, that is a threat. Just my opinion and again, I base my rife treatment on muscle testing and I find via muscle testing that it is perfectly fine for ME to use the 2 treatments together.
edited to add: I have Bryans book but I don't use it to pick frequencies so I can't tell you if they work or not. Again, it will depend on what your specific issues as to which frequencies would work best for you.
Terry
Could you post in my new thread on Rife Frequencies about which you use etc? I'll be a big help I believe if people like you can contribute.
How slow do you think I should begin when I do choose to start? How long would you recommend I rest for as well?
It's self evident to me (not to sound pompous), that antibiotic therapies create a hostile environment within the body which can be perceived , which Rife therapy is a bit more like striking an environment with Lightning and then disappearing as fast as it arrived. Does that make sense? Something tells me that Lyme has evolved through millions of years and to many environments, but never to electricity! Then, time goes by, and another lightning strike!
Did you like his book?
quote: keltyl
Haven't had time today to keep up with this thread, but I did ask J about muscle testing and was poo pood. I also mentioned rifing quite awhile back and was told they "weren't fans of rifing". Of course that doesn't me if the point comes I want to try it, I will.
Who is J? PM me? My doctor isn't a fan either and said "I just don't see them getting better."
quote: TerryK
I've talked to some doctors who use muscle testing and feel it is valuable and others who don't. To each his own. It works for me. I don't bother trying to convince a doctor one way or the other. I never bring it up at all with some because it is clear that they would not be open to it. I think many of them have no experience with it and simply don't believe in it.
Same with rife. Some have patients who have success stories and thus they think it might be useful. Others don't. shrug
Can you tell me more about muscle testing and how you perform it yourself?
quote: glm1111
MB...FYI...Just thought i would add this info as a possibility as to why you may have fatigue when you use a certain group of muscles. This used to happen to me. Round worms can invade and travel through muscle tissue.
Google " worms in muscle tissue"
They also migrate to the lungs. I had severe asthma (rush to the hospital via ambulance asthma) for 40 yrs until I started using antiparasitics. My asthma and breathing problems are completely gone.
These parasites can do a lot of damage especially when the immune system is not functioning properly and leaves us open to a parasitic hyperinfection.
I feel them wiggle and die daily in my muscle tissues so I know they are/were there. Hope you find an answer soon,
I ordered Humaworm to start. A 30 days supply. I'm also still on the VFEND, and it did create a Herxheimer reaction, so it's not clear what is going on. If I begin to get better, I'll have more to report. VFEND is in the family with Diflucan of antifungal (and molds).
quote: coltman
Some infections can make your immune system tip over to a Th2 response and we need a Th1 response to help get rid of lyme.
I'm hoping that you find the answer for yourself and your girlfriend. I'm still looking for answers myself. The more reading I do, the more I think the th1 functioning of the immune system is critical. I don't think IV abx is going to solve the problem if your immune system is not functioning properly.
Thanks for Great links Terry!
And I am myself reached conclusion that Th1 response is critical for combating chronic infection. But what is not clear is the exact nature of immune dysregulation.
On the other hand it seems MS and neuro symptoms are most likely caused by Th1 responce (which is inflammatory in nature and is characterized by production of macrophages and lysis of infected cells)
So its not per se lack of th1 response. It is that its for some reason ineffective in eliminating chronic infections . One of the mechanisms is subversion of macrophages themselves- it is been documented that intracellular bacteria inhibits cell apoptosis and therefore able to stay in the cells much longer and reproduce there, s it also can subvert detection mechanisms preventing recognition of infected cells.
I have zero doubt based on my own research that immune dysregulation is common, and abnormal cytokine production can and dose result with chronic illness. The immune system is overwhelmed and then literally controlled like a puppet by the invader to maintain an environment that is as tolerant to the host as possible while also as tolerant to the host -- so the host will live long enough to play it's role.
I think immune system modulators and stimulants (of various types depending on the case) can be discussed greatly at length with a Lyme literate immunologist. However they are in short supply.
quote: coltman
Well the thing if the rife works how they think it works (and it if works at all) it destroys spirochette immediately during rifing session (by breaking its cell wall). So it doesn't have a chance to convert to cyst form
Spirochette converts into cysts when it starts sensing hostile environment - like elevated level of harmfull (to it) abx in the blood. ABX do not destroy bacteria immediately - they take time to work, so it has time to convert
All in all if rife works I think his argument makes perfect sense.
So main reason to not use abx during rife is to allow bb come out and be in spirochette form which is only form vulnerable to rife. I dunno though if intracell abx cause conversion to cyst - that a topic to be researched if some abx do not cause it it makes perfect sense to use them
I do know though which abx definitely cause the conversions to l-forms and cysts- cell wall inhibitors like cephalosporins or penicillins.
Yes, that's correct the Cell wall inhibitors have been shown in valid peer reviewed studies to cause conversion. The Cyclines to a much lesser degree.
quote: AliG
I haven't read this thread in it's entirety. I've scanned your Sx & Txs (as best I could).
I second James' opinion in that I see persisting Babesiosis and Lyme.
I had the hardest time tackling Babesiosis but I do think I finally did.
IV Clindamycin IV Azithromycin Mepron Diflucan (all 3 weeks on, one week off - repeated 3 times) Artemesiae (1 week on, three weeks off, repeat 3 times)
During 3rd week (before break)- 3-5 days of Flagyl(metronidazole)-depending on tolerance & Questran (cholestyramine) to absorb toxins
That seemed to have eliminated the Babs symptoms.
Just before doing that I did Biaxin (4 mos) along with Ceftriaxone(3 mos added in after 1 mo) & Zhang's herbs, during the last week, I dropped Biaxin & added in Flagyl & Questran.
I think that made SIGNIFICANT progress against the Lyme during that Tx.
Had I taken out the Babs before that, it might have done the trick, but I believe that the Babs still protected the Lyme to some degree.
Since that last IV Lyme tx & then taking out the Babs, I've been on Mino, Rifampin, & Diflucan and had a MUCH slower creeping back of symptoms than with previous Lyme Txs.
A recent dental appointment sent me into a flare & I've now added a fairly high dose of Amoxicillin to the mix. That seemed to settle the flare.
I don't know if it will pull me back out of the creeping sx. I guess time will tell.
I'm not sure what direction we'll go in at my next appt, but I don't think it's going to be weaning me off abx like I had been hoping. [Roll Eyes] Not just yet anyway.
If I were you, I'd try to lay off the aerobic exercise & aggressively tx Babesiosis for a few months. I think it's the Babs causing you to have problems with non-aerobic exercise.
The non-aerobic exercise should be starting with stretching & resistance no more than 1 hour every other day, and working up to light weight & gradually increasing but still no more often than every other day until you get the Lyme taken care of.
I almost forgot..... I also did a month of Bactrim in between the IV Lyme & IV Babs Txs & it may have been helpful for me because the Sx didn't come back during that time.
I don't recall reading why you couldn't take it but I have no way of really knowing whether it made a difference or if I would have still felt good without it. [Roll Eyes]
If you think parasites/worms may be an issue....
Zhang's Allicin (best taken with chlorophyll capsules if you plan to keep your girlfriend [lol] unless she takes them too [Big Grin] ), + raw pumpkin seeds (taken first thing in am & every 6 hours after for a few days), + papaya (I get the large Miradol Papaya & eat 1/2 per day) +/- & bitter melon(if you can stand it (ICK) I think Zhang's has capsules but I haven't tried them) should address them.
I'll try to go back & re-read, but I wanted to post this in case I didn't get a chance & forgot about it later.
Ali
Thank you Ali, for your experience and sharing your opinion with me. I have done all of Dr. Zhang's treatments. Only Coptis gave me a strong reaction (Herxheimer), but then I didn't recover. I can't take the Bactrim because it turns my skin red and makes me feel like I have a sun burn - even though I didn't go into the sun. I'm very ambivalent about running IV's at this point. I don't want to keep pumping and pumping drugs through my system that just aren't working. I'm going to focus on the parasites first and work with this antifungal VFEND temporarily. I'll keep everything you've said on file. My night sweats were nearly absent last night. Just a slight slight dampness around my neck, but it was very minimal. I think going after the Babesia more heavily is my next challenge, and I think I'll talk to my physician about focusing only on that with drug therapies.
quote:
TerryK
Coltman - thanks for the links and the info. I didn't know about MS and neuro symptoms and a Th1 immune response. I think when either Th1 or Th2 becomes dominate it can be hard to get rid of certain infections. I'm far from an expert although it is an area that I plan to look at more as time and energy allow.
I've recently found a plant (PawPaw) that seemed to help me quite a bit. The leaves work on malaria but I've been using a product made from the twigs. Most interesting thing that I read about it is that it downregulates ATP (energy production) of abnormal cells. It's used for cancer.
We know that babesia, bart and babs can all live inside the cell. It's possible that Paw Paw reduces the energy available to these organisms which would drive them out of the cell where maybe they can be killed or perhaps they die in the cell?
The Pawpaw sounds interesting. I'd like to know more as you go.
quote: TerryKBased on the thought that it down-regulates cellular ATP production I initially thought I might actually be more fatigued but just the opposite happened. I assume I have a lot of abnormal cells that are sucking up my energy?
I'm still looking into it and can't recommend it for anyone else because I don't know enough about it yet.
Here is the description of the product that I take.
Paw Paw Cell-Reg� selectively targets specific cells to enhance the overall health of the body.
Paw Paw twigs contains acetogenins-active compounds that modulate the production of ATP in mitochondria of specific cells, which affects the viability of specific cells and the growth of blood vessels that nourish them.
A recent clinical study with over 100 participants showed that the paw paw extract, containing a mixture of acetogenins, supports the body's normal cells during times of cellular stress. Paw Paw Cell-Reg is a valuable tool in strengthening and supporting the immune system.
Only those who desire to target specific cells should take this product on a regular/daily basis.
[quote] TerryK
I doubt that it inhibits formation of cysts but who knows?? Even if it did, it would seem unlikely that a person wouldn't have all the forms of borrelia in their body if they've been infected for very long but again, who knows? Each cyst supposedly can break open and release up to 5 borrelia. You can see how one would have to kill all cysts in order to get rid of the infection entirely.
In any case, it works for me. It's not perfect, it's not the only thing I need. It is another tool that I find very helpful.
I avoid spending time and energy trying to convince anyone. There are many discussions of this nature going on in other places. I just wanted to convey my personal experience with it in case it was helpful.
As some may have read, I fully agree about this. It's a tool that can't be ignored by anyone earnestly seeking truth as well as recovery. I'll take recovery over truth though at this point. If it's a placebo effect like many of the critics say -- great, give me some. However, if placebo effect were apart of my process, you would think the 5 million + dollars I've spent so far since birh (Mostly the insurance company...poor *******s), that something else would have gotten me better. The only thing that worked was a bottle of Tetracycline that costs $20 dollars a month, and it brought me to my current plataeu. So why did antibiotics fail me thus far? We don't know, but what we do know is I still have Lyme, and a variety of other things that probably are hindering recovery. That is what this thread is about.
quote: sixgoofykids
Actually, with Pilates you don't work out with the class because you need to be free to help, so it doesn't affect my workout. What's challenging is learning to tell others what to do when I'm not doing it myself and learning to put it into words.
I play flute at Mass every Sunday. When I was sick, I could only play the melody. The harmony if it was a pretty good day. Now I can play the flute part which is typically different than what everyone else is playing/singing. I think a big part of the block with music is the Lyme, at least it was for me.
Oh, I see! Yeah, I've gone through that. It's like, uh...it's obvious. You do .....uh...twist...um, stretch --- oh hell, let me just try it and then tell you. So you know exactly what I'm talking about when it comes to the musical decline in ability. I agree. I think it's the Lyme in my case too. My cordination is like an infants sometimes. I can't get that "fine motor" moving effectively or fast enough.
quote: springshowers
Here is a simple and short page that talks about how it was developed and how it works.
This site also compares and talks about other energy devices from a practitioners and patients perspective.
AliG Terry thanks for that info, the pawpaw sounds really intriguing. I'm going to go check that out! [Smile]
Spring thanks for that link. I'll check that out too. It sounds like I might find some answers there.
Sorry to sideline your thread MB, with my questions [Roll Eyes] Shame on me [tsk]
So'k, but I would like to get back to exploring other issues. There is so much left to cover.
quote: TerryK
Thanks for the link Spring. I think there are a number of theories about how rife works. Rather than divert this post, I'll link to AliG's post where she asks about rife. Good thinking to start a new post AliG. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/86466?
Hopefully the pawpaw will turn out to be something useful for us. So far I'm pretty happy with it but I've only been taking it for about a month and at low doses.
Terry
Yes, please keep me updated on that.
quote: oyvey
Some of your emotional and mental symptoms seem very close to those of my family and two friends who all have had severe Bart. The six of us tried Cipro, Factive and Rifampin and doxy but nothing worked except levaquin.
God it's good to hear that. I mean it's sad, but Levaquin is my last hope and I have a huge supply of it right here with me. I'm going to use it. I just want to make sure I do it right when the time comes. I'll consult my specialist. I thought I was the only one who failed Factive (Based on how my LLMD, PA, and NP responded when I told them it didn't help)
quote: oyveyOne thing about Bart is that it seems to respond quickly to the right antibiotic for the individual but if it isn't taken long enough--if you haven't really decimated the bacteria-- Bart comes back very quickly, and it is soon just as strong as ever.
That was my experience. Bactrim caused me to feel like death within 3-4 days of starting it. I was totally debilitated and couldn't talk or move. My GF had to care for me. Then, suddenly a day and a half later, it passed and I started to feel better. Sadly, then I developed the red man rash and had to stop. This is a bacteria that replicates much faster than either the spiro lyme or the parasite babesia.
quote: oyveyI have known a couple of other people like us who couldn't get anywhere with any treatment for Bart beside levaquin, and their improvement in mental and emotional stability was also rapid. So if you were improving with the levaquin and didn't take it long enough you would probably relapse quickly and then feel as if you hadn't gotten anywhere.
I don't recall relapsing quickly, but I think the IV Levaquin and potent Bactrim combination taken for about 3 weeks probably really sent it spinning. I felt around 45-50-% for about a year after the IV V, Oral Lev, and oral B. I think the Bactrim and Levaquin were the primary agents responsible.
quote: oyveyI also read about a case just posted in the blog by lymeMD about a patient who wasn't improving on the lyme treatments given. It took many tries until he finally found the right antibiotic cocktail for her but now she is improving.
So God Bless and keep on keepin' on. My husband has had terrible gastro problems with lyme for over a decade--much pain and debilitation-- and he kept asking about rifaximin Finally he got some prescribed for him and he was tremendously improved within weeks. Amazing.
So glad to hear. Do you recall what the combination was? Is it related to our discussion?
Posted by TerryK (Member # 8552) on :
MB wrote: Could you post in my new thread on Rife Frequencies about which you use etc?
I'm getting ready for a doctor's appointment over the next few days but I will after that.
MB wrote: How slow do you think I should begin when I do choose to start? How long would you recommend I rest for as well?
I would play it by ear. I don't know which frequencies you are starting with but I'd start with no more than one minute per frequency at first and I would only do one pathogen. Your next session will depend on how you respond to the first one. If a big herx, give your body time to clear out toxins and recover. Go by how you feel. I've gone for as long as 3 weeks and as short as 3 days between sessions. Give yourself at least 2 days between sessions, ideally more time than that once you have figured out how you respond to it.
MB wrote: It's self evident to me (not to sound pompous), that antibiotic therapies create a hostile environment within the body which can be perceived , which Rife therapy is a bit more like striking an environment with Lightning and then disappearing as fast as it arrived. Does that make sense?
Makes sense but we don't really know how rife affects the body. It could change PH, oxygen levels and many other things for a period of time after treatments making it a more hostile environment for borrelia or other pathogens.
I agree that borrelia has survived for a very long time by adapting. It is great at that from what I've read. I don't know how fast it could adapt or become resistant to rife. I tend to think it would not happen very fast but that's a wild guess, I have no data at all to back it up.
MB wrote: Did you like his book?
I found it helpful when trying to figure out what type of machines were out there but it is not a book I use as a reference.
MB wrote: Can you tell me more about muscle testing and how you perform it yourself?
It is complicated. I'll e-mail you. Will try to get it done in the next few days but it might be Wed. or Thurs.
Glad you have some new things to try.
Terry
Posted by kim812 (Member # 17644) on :
MB- I had to reply to your post. I haven't been around for a while since I have discontinued treatment. I thought I had been on alot of abx/meds but you have done way more than me. I was seeing Dr. H and JF in NY also and wasn't making progress. They finally told me about some chinese doctor in VT they thought I should see. They said he was good with complicated cases but that his herbs tasted and smelled terrible. Then they wanted to send me to a endocrinologist in CT. Now I never had any thing close to a positive test so in that way you are different than me.
I honestly think they didn't know what to do for me anymore and that is when I began to really doubt the Lyme diagnosis. I was on IM for 4 months 3X weekly and IV for 9 months. Nothing....Plus countless other abx along with treatments for co-infections.
I hope you find your way back to health. I am on year 5 and won't give up trying to find the answer...
Posted by METALLlC BLUE (Member # 6628) on :
Let me update you all, and then I will attempt (though I'm very tired and depressed today) to respond to some of your postings.
Next Move
On October 20th, I have to get a colonscopy done. It's routine for me, so don't worry.
After the 20th, I considered starting Humaworm. However, after further discussion it is my opinion that I will first do a long term trial of Levaquin. I started a new post here at Lymenet about preparation for Levaquin use. If you have opinions or answers to my questions, please tell me:
"My expectation is 3 months +, magnesium supplementation.
Can I pulse this drug 4-5 days on, 2-3 days off, and expect to still see the same results while minimizing side effects?
Which type of Magnesium is optimal?
May I mix Tetracycline with levaquin?
At this time, only Malarone, and Levaquin would be the drug choices unless Tetracycline was necessary to arrest the Lyme Disease.
I am writing my LLMD to tell him I'll be self treating under the care of my PCP, and that I don't wish to make the long drives at this time to see him. I'm burned out with 9 months of aggressive drug therapy under his care. "
Letter To LLMD: I'm now working on a letter to the N.P. at his office. Informing him of my decision is difficult. Here is what I've chosen to say.
"To JF: You requested I write you after completing a course of VFEND. I experienced a herxheimer reaction at day 8 1/2. The response ended, but I did not improve beyond 35% (blood work was done). I am ending treatment with VFEND. I've done continuous aggressive therapy for 9 months now since I arrived at your office, and I'm burned out and discouraged, so I did not setup a follow up visit for this month (I will eventually). I believe the Babesia and Bartonella are my primary problems interfereing with my recovery. In 2005, after having IV sepsis (with Vanco), I was placed on Bactrim and Levaquin. I improved dramatically while doing this. I can no longer return to Bactrim or Vanco due to allergy. I'm going to give Levaquin (500mg) a chance with a three month cycle per Dr. Burrascano's guidelines under the care of my primary care provider. Magenesium supplementation included. While Factive did not work, it is my impression from other patients that Levaquin is sometimes necessary instead for clinical Bartonella (tick variety). It is still not clear whether I will pulse the Levaquin to reduce side effects. I also believe that Malarone has been a fine treatment for Babesia in my case, but that treatment should be expanded eventually to ensure it's resolved. Thougths? 2tsp x 2 Mepron was already used with 500mg Zithromax, as well as long term Dr. Zhang Artemesiae (6 caps day). I believe IV treatment and Dr. Quang are not optimal options at this time for my Lyme Disease, as I am not confident they hold a solution. Such commitment for little result or fragile remission (at best in my case) is not the direction I wish to pursue for now.
Please feel free to write or call with brief thoughts. I will perform all treatments under the supervision of my PCP. You can expect to see me at the office in December probably. The trips are exhausting as it is, so this break will help me. Medicare doesn't cover my phone consults. If treatment fails due to side effects, I will terminate and go back to Tetracycline before seeing you.
Sincerely, Michael
Primary Care Provider: S******* D N.P. 413-739-**** Michael P***** Phone: 413-747-****"
Thoughts? Changes to the letter? Any help would be greatly appreciated.
[ 11-22-2009, 01:20 PM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
Additionally, I've read some books, and purchased some new books. Feel free to comment if you like. I'm primarily focused on Rife, Babesia and the 13 Doctors books.
First, I've made a purchase of 6 books to help me sort out some questions.
Previously I've read:
Cure Unknown (Pamela Weintraub
Babesia (book 1) (Dr. Schaller)
Bartonella (book 1)(Dr. Schaller)
Healing Lyme (Stephen Buhrner)
When Antibiotics Fail: Lyme & Rife (Bryan Rosner)
Coping With Lyme Disease (Denise Lang & Dr. Kenneth Leigner)
The new books are:
"The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm?"PJ Langhoff; Paperback;
"Rife's World of Electromedicine: The Story, the Corruption and the Promise" Barry Lynes; Paperback;
"Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies" Connie Strasheim; Paperback;
1 "The Rife Handbook of Frequency Therapy, with a Holistic Health Primer" PhD Nenah Sylver; Hardcover;
"Lab 257: The Disturbing Story of the Government's Secret Germ Laboratory" Michael C. Carroll; Paperback;
"Babesia Update 2009: A Cause of Excess Weight, Migraines and Fatigue? A Common Reason for Failed Lyme Disease Treatment" James Schaller M.D.; Paperback;
Posted by METALLlC BLUE (Member # 6628) on :
quote: TerryK I'm getting ready for a doctor's appointment over the next few days but I will after that.
Ok.
quote: TerryKI would play it by ear. I don't know which frequencies you are starting with but I'd start with no more than one minute per frequency at first and I would only do one pathogen. Your next session will depend on how you respond to the first one. If a big herx, give your body time to clear out toxins and recover. Go by how you feel. I've gone for as long as 3 weeks and as short as 3 days between sessions. Give yourself at least 2 days between sessions, ideally more time than that once you have figured out how you respond to it.
At this time, I'm considering one frequenc for 1 minute. This is subject to change. 612hz
quote: TerryKMakes sense but we don't really know how rife affects the body. It could change PH, oxygen levels and many other things for a period of time after treatments making it a more hostile environment for borrelia or other pathogens.
I agree that borrelia has survived for a very long time by adapting. It is great at that from what I've read. I don't know how fast it could adapt or become resistant to rife. I tend to think it would not happen very fast but that's a wild guess, I have no data at all to back it up.
If I had to take a guess, I doubt Rife will induce adaptation. Resistence may become an issue, if one particular frequency kills spirochetes of a particular physical type, leaving behind those that may require different frequencies. I could see that taking place, but the simple changing of frequencies over and over may resolve that. This is more a hypothesis than statement, obviously.
quote: TerryK I found it helpful when trying to figure out what type of machines were out there but it is not a book I use as a reference.
What do you use for your primary reference? I found the book helpful but have concerns that being it was written in 2004-2005, it may be outdated "somewhat" as the discussion has been ongoing.
quote: It is complicated. I'll e-mail you. Will try to get it done in the next few days but it might be Wed. or Thurs.
Glad you have some new things to try.
Terry
I think I received your e-mail. I will read it shortly.
quote: kim812 MB- I had to reply to your post. I haven't been around for a while since I have discontinued treatment.I thought I had been on alot of abx/meds but you have done way more than me. I was seeing the main LLMD and N.P also and wasn't making progress. They finally told me about some chinese doctor in VT they thought I should see. They said he was good with complicated cases but that his herbs tasted and smelled terrible. Then they wanted to send me to a endocrinologist in CT. Now I never had any thing close to a positive test so in that way you are different than me.
That's exactly what they wanted me to do. See. Dr. Q. I've met him plenty of times under other circumstances and he's a great guy, but he's made it clear in respect to Lyme Disease that he can't solve the problem, only support the body. However, he may be able to diagnose other ailments and treat them effectively. Which testing did you have anyway?
quote: kim812I honestly think they didn't know what to do for me anymore and that is when I began to really doubt the Lyme diagnosis. I was on IM for 4 months 3X weekly and IV for 9 months. Nothing....Plus countless other abx along with treatments for co-infections. I hope you find your way back to health. I am on year 5 and won't give up trying to find the answer.
I agree, they don't know what to do. IV is the next step and I don't think it's the right course for me. What are your symptoms?
[ 11-22-2009, 01:21 PM: Message edited by: METALLlC BLUE ]
Posted by CD57 (Member # 11749) on :
Metallic, what about Avelox?
I know a patient of Dr H and PA who is done with treatment from IV Rocephin, IV Avlox, malarone, plaquenil and something else, pulsed.
Posted by Parisa (Member # 10526) on :
It's late and I'm too tired to read all of the responses but I wanted to say that my husband never herxed alot. However, he did improve on certain drugs. We never saw big improvements with Lyme drugs although we do know that it is in the picture. Where he did make big and obvious improvements was with Babesia treatments.
The first round of mepron (4 months) there was some improvement and the thought was we had addressed it. Other drugs were rotated in for about 7 months when we determined the Babesia needed to be treated some more as he was declining versus improving at that point.
IV Flagyl brought alot of improvement. I don't know what the difference would have been versus oral. Malarone was added to it and again more improvement noted. There was three months of Flagyl and about 8 months of Malarone.
I believe IV Zith was added after the Flagyl was retired. He then was shifted to IV clindamycin and quinine - about 4 months worth. At this point, it looks like the Babesia has been knocked out.
Early in his treatment my husband did about 8 months of artemisinin and zithromax but never got great results with them.
I think you should try the antibiotics you haven't tried to see if you get results, treat your babesia more aggressively and for a longer duration and possibly with IVs, and also use meds you know have worked in the past but for longer duration.
The fact that you have had some improvement is a good sign. It means that you are a responder. It's just a matter of figuring out what you will respond to (and you've definitely been through alot of meds).
Posted by Robin123 (Member # 9197) on :
Mike, I haven't read thru all the thread, but have you tried treating with a PEMF machine? It's a magnetic machine and restores the body's electromagnetic flow so everything works better.
Posted by kim812 (Member # 17644) on :
MB- I had testing for everything you can imagine. The first visit I had with JF they took 13 tubes of blood. I had previously had the WB done and all the co-infection testing. If you want more specifics on the testing I will be happy to list them for you. Mostly it was Virus's and other bacterial infections I had never heard of.
When they started suggesting I go to other doctors that is when I knew they had no clue as what to do. I was having phone consults with JF that were very unproductive. He would take me off one abx and two months later put me back on. It was turning into alot of confusion and questions.
I have done two rounds of IV and they were not successful. Dr. H really doesn't like doing IV because he told me people 90 percent of the time relapse afterwards.
I have to say that the one thing that made me lose faith in them was when I was on IV in March 2009 and they told me to discontinue it but to leave the line in. Well that line was in for 2 months unused. I even had an office visit and said what should I do have it pulled and he said no. So finally at the end of May I called JF and said I want the line pulled and he said oh well maybe I will start you on some zithromax IV. I told him that this had been unused in 9 weeks and now all of the sudden you want me to do Zithro. I said NO I was having it pulled and that is the last time I spoke with them.
I truly hope you find some relief from your symptoms and I think you made the right decision to take a break from them. It was very difficult for me to travel out there too.
My main symptoms which I had from the very start are chronic fatigue/total physical exhaustion, calf pain (twitching-shooting-burning). I have also had many other symptoms including- eye pain tingling and pinpricks (hand and feet) insomnia and very poor sleep quality sweats night and day low blood pressure lightheaded when standing up hand stiffness no appetite weight loss abdominal pain
I can't think of others at the moment. The physical exhaustion is my most debilitating symptom. I have had to totally change my life due to this and no abx have helped with either of my two primary symptoms.
I wish you luck in your quest for better health and I will continue on as well. The letter to JF was great...I probably should have written one to him too but at the time I was extremely disappointed and a little upset with how things turned out with them. Take care
Posted by cleo (Member # 6646) on :
I agree with myco's statement not high enough or long enough. I did not respond until the 4month on the same combo. 1 to 2 months is not long enough. I sent you a pm.
Posted by Abxnomore (Member # 18936) on :
I agree with cleo and myco. Why not try IV for a extended length of time, six or more months with levequin? If after that, you still get don't get any results than I would give up on the ABX route.
But IMO until you get on IV and some heavy hitter orals in high doses along with a cyst buster for a "long" period of time I'm not sure you can tell for sure that you have reached the end of the line with ABX.
You seem to have a lot of neuro symptoms. IV is what by passes the stomach and gets right up to your brain. It usually is best for helping clear neuro symptoms but not just IV alone....aggressive oral treatment along with it.
Posted by keltyl (Member # 14050) on :
This thread is scaring and depressing me, since I see Dr. H and JF also, as I mentioned earlier in this thread.A year and 1/2 with no improvement either.
Now doing IV Rocephin,Factive, and plaquenil. I really don't want to think I'm wasting all this money, worst of all, that I'll never get better.
I see Dr. H next Wed. I've actually only seen him once since I started, so maybe this will prove interesting. I haven't found the Factive of any help either, and I've been on it everyday for several months.
I will be seeing a Dr in NYC in Nov. for parasites. I keep thinking maybe this is holding me back, b/c of what I have read on here. Hoping it's not another dead end.
Posted by onmyway (Member # 17607) on :
I also did 5 mmonths of TYGACIL! I also threw a blood clot and got a pulomnary embolism. However it was the oe drug I fetl it jumped me from 40% to about 75%! if you tolerate tetracyclines it is was better than IV DOXY!!! Most people have a hard time tolerating it though due to stomach issue. I was ready with anti-nausea meds and made it through 5 months. Think hard about that one. They say it is one of the best!!!! Good Luck!!! ONMYWAY
Posted by massman (Member # 18116) on :
Here we go round in circles. And circles.
Circles of drugs and frustration.
You may want to check out the thread "How do you determine what you need ?"
It could well apply to these poor results and sad stories.
Posted by Abxnomore (Member # 18936) on :
keltyl I don't want to discourage you but 1 1/2 years is really a very short time to be treating this illness. It's about that point when one begins to find their footing especially as relates to co-infections and seeing what may be helping and what's not.
It's early on in your journey. IMO IV rocephin is one of the least effective IV meds but many do get help from it. I think that was even mentioned to refute one of the studies done by the IDSA during the IDSA hearing but I'm fuzzy on that now. Plus, why risk losing your gallbladder when there are so many other IV ABX available, which I think are so much better.
Springshowers is doing IV flagyl, along with other IV ABX and detox IV's at Evita. Now I think that has to be really hitting something.
TYGACIL, thou hard to tolerate does seem to bring good improvement in some and so does vanyco but vanyco must be used in the hands of a very skilled doctor. Peaks and troughs must be monitored on a regular basis. I saw one friend go from about 25% to probably 90% on Vancyo and orals used for at least 8 months, may be more.
Posted by keltyl (Member # 14050) on :
Thanks all for your advice, I do appreciate it. I know 1 1/2 yrs isn't that long, but I've seen no improvement at all. I'm not young, and that bothers me too. I don't have years and years for treatment, I want some enjoyment out of life b/f I get too old.
These other IV meds, are they as expensive as rocephin, and do the ins companies not want to pay like the rocephin? I do believe one should show more improvement with IV's vs orals.
I do wonder also, there are many meds I haven't been on yet that others mention here, and wonder why.
Posted by CD57 (Member # 11749) on :
what about gentamicin?
Posted by kim812 (Member # 17644) on :
keltyl- don't be too discouraged. I believe I had no success because I don't/didn't have Lyme. I have been on thousands of pills for months at a time. They tried all different combos and none of it did anything for me at all.
I know Dr. H is not big into IV therapy and really doesn't like to do it but I am sure if you wanted to he would agree.
Yes I have also spent thousands out of pocket for office visits, phone consults, supplements, gas, hotels and medications..all to to avail.
I think Dr. H and JF are great at what they do as long as the patient indeed has Lyme.
The last abx I tried was Factive and I had zero response. That is when I said enough... I think Dr. H and JF were beginning to think maybe they were treating something that wasn't there. You have to do what you think is the right thing for yourself and your body.
I wish you luck in your continued search for better health
Posted by Abxnomore (Member # 18936) on :
I can't speak to pricing and insurance but no matter who your LLMD is and how well regarded he or she is the only way you will get what you want and get progress is by being an educated patient and asking to try things that you think may work.
As you are doing here, unfortunately, it is your job to see what other doctors and patients are recommending, dosages, combo's and adjunct treatments besides ABX such as supplements, IM mag shots and B12 Methylcobalamin, adrenal support, heavy metal toxicity testing and removal, candida, detox issues that have been discussed at length in anohter post regarding Phase 2 of liver detox, and neuro transmitter testing....a very important over looked issue.
If he or she will not be open to having that kind of dialogue with you, than it's time for a change.
A great resource for medical abstracts is www.pubmed.com and of course, lymenet is one of the best places for this kind of information.
Adding an edit based on kim812 response: For seriously ill patients I can't see how one can make any headway without extensive IV and orals. There is no way that orals can get up to the brain like IV does. The only chance you have is with huge doses of orals and most patients can't tolerate them and still you won't get the same effect. IM bicilian gets deeper than many orals.
Posted by keltyl (Member # 14050) on :
Thanks again to all of you. I was on bicillin shots for several months, along with an array of others. I did the bicillin 2x a week, then 3x a week with no response. And also, BTW, I was CDC positive for Lyme.
I have learned alot from this board, but very hard for me to keep up with it.
I am on IV rocephin now, have an appoint next Wed. Anything any of you think I should ask about, that would go along with the rocephin. Taking factive and plaquenil right now.
All of what has been mentioned today, I have never heard of. I know you mentioned he is not big on IV, but they have been trying to get me to agree to rocephin many months ago.
Posted by Abxnomore (Member # 18936) on :
I don't want to change the direction of this post. Post a new one about your situation, and what if any thing rocephin has done for you. I never really thought he was IV adverse when it came to one of my friends who went there. I just think rocephin is not a very good choice.
Mike....it's all yours Posted by keltyl (Member # 14050) on :
Sorry rattling on, I did't even realize what thread I was on. Sorry Mike.
Posted by METALLlC BLUE (Member # 6628) on :
It doesn't matter. Keep talking Keltyl if it helps.
I'm overwhelmed at this point, so I'm not absorbing much now from my thread. I'll return to it as I move through the available choices. If I tried to do everything that everyone recommended, I'd die (likely), so I'm sorting out the next basic step, and then I'll cross bridges as I come to them.
The information offered is extensive, exhausting and would take many years to complete if it was done. I think everyone understands this.
Posted by kim812 (Member # 17644) on :
I just wanted to add that I was on Rocephin for 9 months and Bicillin for 4 months so I think I gave it a good try.
I am not saying Dr. H doesn't want to do IV. He told me that many of his patients relapse afterwards so it was not a top choice for him...
I second that. sorry mike...
Posted by keltyl (Member # 14050) on :
MB...My sentiments exactly...I got overwhelmed trying to follow this thread....and it is extensive and exhausting. I don't seem to retain anything I read either.
Posted by seekhelp (Member # 15067) on :
There is some incredible information in this thread, but tough to take in. What completely blows me away is how many here can AFFORD or get coverage for 8 months of Vancomycin, 6 months of Tygacycline, a year of IV Rocephin, 10 months of double-dose Mepron, etc. Is there a bank with a teller handing out Benjamin Franklins I'm not aware of?
I imagine this wipes out most people's savings. How on earth do these LLMDs say go go go 2 years with 0% improvement? Am I the only one who finds that very disturbing? I completely understand trying IV if orals fail due to better BBB penetration. That makes perfect sense and worthwhile.
I guess what seems odd is so many here say LLMDs recognize Lyme with tons of experience and their clinical Dx is accurate. From what is written here, it seems possible, this is not the case. Sure, we can say this person has a complicated case or whatever, but some of these guesses must be wrong. I really hope the testing improves soon.
Posted by seekhelp (Member # 15067) on :
I'm not saying it's one's total fault. I'm just have concern at times about how long and strong you go as a doc if you see very little or any improvement treating with meds you know should have effect. I mean when you treat thousands of patients, you've seen a lot of clinical examples, right? I respect a doc who steps back at times and says am I doing the right thing?
Posted by kim812 (Member # 17644) on :
seekhelp- I had to pay for the IV out of pocket. My insurance company only gave me a months worth. I think that is why the doctors do it as a last choice. The insurance would pay for my bicillin injections though. I know some ins. doesn't.
Was I diagnosed because I went to a "LLMD" because my doctor here was very reluctant to treat with just my 41 band.
That is where I have a problem with the testing. I realize it isn't very good but just because I have "lyme" symptoms doesn't mean I have Lyme. I didn't test positive for anything and I am sick...so who is to say I don't have one of the other illnesses I tested negative for. My symptoms are pretty universal to so many illnesses.
My doctor here did step back and take me off abx for a break. He is not a well known LLMD but he knows his stuff and started to wonder....
You are not the only one finding this disturbing.For sure if I had stayed with my doctor I would still be on abx because he would have continued giving them to me but I had to just say enough already after 30 months.
Maybe I am wrong but I am going to take a while to sort things out and see where it leads me.
Posted by massman (Member # 18116) on :
Einstein's definition of insanity is doing the same thing over and over again and expecting a different result.
Posted by Parisa (Member # 10526) on :
Seekhelp,
Believe it or not, we actually got almost two years of IV antibiotics paid for by insurance. The infusion company would submit them and obviously knew the secret code to get them authorized. Now, the oral antibiotics? We've had to pay for alot of them out of pocket.
Posted by CD57 (Member # 11749) on :
I wonder about this 10% group as well. I guess I am in that group but I refuse to give up. I think there may be some sort of immune thing going on which prevents the immune system from recognizing the infection and fighting. When that is the case, abx are useless.
I don't know what the answer is. I am 2.75 yrs into treatment and could have written MB's post. Actually I have had some improvement but nothing in the past year to speak of. Whatever I have grows back in 48 hours and does not seem to respond to anything. It gets suppressed but then rebounds immediately. This is not Lyme.
Posted by massman (Member # 18116) on :
tosho - the current remarks about lack of progress is depressing, isnt it ?
The assumption seems to be that drugs can cure all (while kicking the liver to death)
This drug, that drug, what about all the others that are posted about here. I realize that when one pretty much confirms they have lyme and / or coinfections the reaction is kill 'em kill 'em kill 'em.
I have always advised to get the detox organs in good shape then the affected organs in better shape then attack the lyme. But it seems hard to not immediately react to the kill 'em response.
If treatment is often repeated or constant with very poor or no results isn't that doing the same thing over and over again and perhaps a bit insane ?
Posted by seekhelp (Member # 15067) on :
Massman, did you have Lyme/cos and beat them? Can you give us some background? If you already did, I apologize and ask if you can point to the thread so I can read it.
Posted by CD57 (Member # 11749) on :
MAssman you can't detox an infection.
Posted by kim812 (Member # 17644) on :
I think the 10 percent is very low..I think there are many more people in that group.
I have not given up but have taken a break in abx to search for other answers. I will never give up trying to find out what made me sick.
My body needed a break from the constant barrage of abx. I have constant yeast as a result even though I haven't been on anything since April 2009.
At one of my appt.s I asked JF why I wasn't getting better and he told me there are so many wierd bugs out there that are infecting people that they know nothing about.
He told me I could possibly have one of them but if it was some type of bacteria it should have been long gone with the combo's of abx I have taken.
Posted by coltman (Member # 21272) on :
quote:Originally posted by kim812:
He told me I could possibly have one of them but if it was some type of bacteria it should have been long gone with the combo's of abx I have taken.
If its a retrovirus like HIV or XMRV then abx are useless
I also think that on top of infections genetics are also a huge factor. Some people do not get sick regardless of exposure -their bodies control infection and damage.
There is a lot of environmental damage as well (from air and water pollution) so all those factors combined cause the disease.
Posted by METALLlC BLUE (Member # 6628) on :
quote: CD57 Metallic, what about Avelox?
I know a patient of your LLMD and his PA who is done with treatment from IV Rocephin, IV Avlox, malarone, plaquenil and something else, pulsed.
Never used it. What is it?
quote: Parisa It's late and I'm too tired to read all of the responses but I wanted to say that my husband never herxed alot. However, he did improve on certain drugs. We never saw big improvements with Lyme drugs although we do know that it is in the picture. Where he did make big and obvious improvements was with Babesia treatments.
The first round of mepron (4 months) there was some improvement and the thought was we had addressed it. Other drugs were rotated in for about 7 months when we determined the Babesia needed to be treated some more as he was declining versus improving at that point.
IV Flagyl brought alot of improvement. I don't know what the difference would have been versus oral. Malarone was added to it and again more improvement noted. There was three months of Flagyl and about 8 months of Malarone.
I believe IV Zith was added after the Flagyl was retired. He then was shifted to IV clindamycin and quinine - about 4 months worth. At this point, it looks like the Babesia has been knocked out.
IV Clindamycin and Quinine, with IV Tetracycline, IV Flagyl, these are all possible ideas.
quote: ParisaEarly in his treatment my husband did about 8 months of artemisinin and zithromax but never got great results with them.
I think you should try the antibiotics you haven't tried to see if you get results, treat your babesia more aggressively and for a longer duration and possibly with IVs, and also use meds you know have worked in the past but for longer duration.
The fact that you have had some improvement is a good sign. It means that you are a responder. It's just a matter of figuring out what you will respond to (and you've definitely been through alot of meds).
We're working on that. I also did not respond to high dose Artemesiae, with Zithromax. We know it's infection causing my illness. I am going after the Bartonella next, and attempting to increase the Babesia therapy.
quote: Robin123 Mike, I haven't read thru all the thread, but have you tried treating with a PEMF machine? It's a magnetic machine and restores the body's electromagnetic flow so everything works better.
No I haven't.
quote: kim812 MB- I had testing for everything you can imagine. The first visit I had with JF they took 13 tubes of blood. I had previously had the WB done and all the co-infection testing. If you want more specifics on the testing I will be happy to list them for you. Mostly it was Virus's and other bacterial infections I had never heard of.
When they started suggesting I go to other doctors that is when I knew they had no clue as what to do. I was having phone consults with JF that were very unproductive. He would take me off one abx and two months later put me back on. It was turning into alot of confusion and questions.
I have done two rounds of IV and they were not successful. He really doesn't like doing IV because he told me people 90 percent of the time relapse afterwards.
I have to say that the one thing that made me lose faith in them was when I was on IV in March 2009 and they told me to discontinue it but to leave the line in. Well that line was in for 2 months unused. I even had an office visit and said what should I do have it pulled and he said no.
So finally at the end of May I called JF and said I want the line pulled and he said oh well maybe I will start you on some zithromax IV.
I told him that this had been unused in 9 weeks and now all of the sudden you want me to do Zithro. I said NO I was having it pulled and that is the last time I spoke with them.
I truly hope you find some relief from your symptoms and I think you made the right decision to take a break from them. It was very difficult for me to travel out there too.
If I were to do IV, I would be far more likely to try the other ideas offered. IV Tetra, Tigecyline, IV Flagyl, IV Clindamycin (Quinine IV?), IV Levaquin, etc.
quote: kim812 My main symptoms which I had from the very start are chronic fatigue/total physical exhaustion, calf pain (twitching-shooting-burning). I have also had many other symptoms including- eye pain tingling and pinpricks (hand and feet) insomnia and very poor sleep quality sweats night and day low blood pressure lightheaded when standing up hand stiffness no appetite weight loss abdominal pain
Same as me basically. Well, If you see my list higher up on page 2, you'll see the whole list, but yup. I had all of these. It's definitely infection driving this and I'm positive it's not antiinflammatory effects from the Tetracycline, otherwise Minocycline and Doxycycline would have helped -- and.... the symptoms wouldn't take two months to return after discontinuing Tetracycline. Whatever it is, is probably low load, low level infection.
quote: kim812I can't think of others at the moment. The physical exhaustion is my most debilitating symptom. I have had to totally change my life due to this and no abx have helped with either of my two primary symptoms.
I wish you luck in your quest for better health and I will continue on as well. The letter to JF was great...I probably should have written one to him too but at the time I was extremely disappointed and a little upset with how things turned out with them.
Thanks, I sent the letter last night after making some minor revisions at the bottom. I wrote this instead for the conclusion:
"I am still ambivalent about the IV treatment, for the reasons we talked about. I'd like to explore my co-infections further first if that is acceptable?
I will perform my current treatments under the supervision of my PCP. You can expect to see me at the office in December probably. The trips are exhausting as it is, so this break will help me. If treatment fails due to side effects, I will terminate and go back to Tetracycline temporarily untill I see you. If treatment is useful, I'd like to add to it and get further insight from you at the appointment. If you have an immediate concerns or thoughts, feel free to respond."
quote: cleo I agree with myco's statement not high enough or long enough. I did not respond until the 4month on the same combo. 1 to 2 months is not long enough. I sent you a pm.
What I find strange is that when I do respond to something, it's immediate. Tetracycline, bang, Herxheimer 8-9 days in, then by the 12th day, symptoms begin lifting. Same with Doxy (except the Cape Cod trip ruined it when I overdid it). Doxy never did return my progress. Malarone also responded very quickly. It was about a week. Bactrim also causes an immediate response (5-6 days in, Herx, then improvement around 8th to 9th).
So, It's possible duration is the issue, it just isn't something I'm going to explore at this time. I've spent 7 years working with "duration" and staying on some drug combos for 6-8 months -- infact, I'm coming up on my 8th year. I've got to take the risk that the time frame isn't the issue as much as dose and type of medication or treatment. The only "duration" treatment I'd consider at this exact moment is Rife and Levaquin. If I must, I'll return to "duration" drug trials later.
quote: Abxnomore I agree with cleo and myco. Why not try IV for a extended length of time, six or more months with levequin? If after that, you still get don't get any results than I would give up on the ABX route.
But IMO until you get on IV and some heavy hitter orals in high doses along with a cyst buster for a "long" period of time I'm not sure you can tell for sure that you have reached the end of the line with ABX. You seem to have a lot of neuro symptoms. IV is what by passes the stomach and gets right up to your brain. It usually is best for helping clear neuro symptoms but not just IV alone....aggressive oral treatment along with it.
I agree, I haven't reached the end with Antibiotics, I just don't have it in me to make an attempt right now with IV. I've burned out after nearly 8 years of playing with antibiotics. I'll keep in mind everything you've mentioned and possibly return to it once I don't feel burned out on this issue.
quote: keltyl This thread is scaring and depressing me, since I see the main LLMD and his N.P. also, as I mentioned earlier in this thread. A year and 1/2 with no improvement either.
Now doing IV Rocephin, Factive, and plaquenil. I really don't want to think I'm wasting all this money, worst of all, that I'll never get better.
I see him next Wed. I've actually only seen him once since I started, so maybe this will prove interesting. I haven't found the Factive of any help either, and I've been on it everyday for several months.
I will be seeing a Dr in NYC in Nov. for parasites. I keep thinking maybe this is holding me back, b/c of what I have read on here. Hoping it's not another dead end.
It's a pain in the *** process. Just keep knocking and someone will eventually open the door.
quote: onmyway
I also did 5 mmonths of TYGACIL! I also threw a blood clot and got a pulomnary embolism. However it was the oe drug I fetl it jumped me from 40% to about 75%! if you tolerate tetracyclines it is was better than IV DOXY!!! Most people have a hard time tolerating it though due to stomach issue. I was ready with anti-nausea meds and made it through 5 months. Think hard about that one. They say it is one of the best!!!! Good Luck!!!
Wait, which one are you talking about? Tygacil? You got a blood clot and embolism from what? The line?
quote: CD57 what about gentamicin?
I haven't used it. It's a possibility.
quote: Abxnomore Frequent Contributor (1K+ posts) B12 Methylcobalamin, adrenal support, heavy metal toxicity testing and removal, candida, detox issues that have been discussed at length in anohter post regarding Phase 2 of liver detox, and neuro transmitter testing....a very important over looked issue.
I haven't done the Neurotransmitter testing. I'm keeping a note of it.
quote: tosho Hi,I haven't read whole topic (it's long) but I wanted to say that I am also patient of your LLMD and we can't find anything that can help me. One time I asked the doctor and he said that about 10% of his patients have poor response to treatment. My previous LLMD also couldn't help me despite many efforts. I think it's very important not to give up. From my observation - also from my local lyme people - 100% of patients who are overloaded with coinfections (babesia, bart, myco, chlamydia all at the same time + other co's) are extremely difficult to treat. I know persoally about 10 people that are positive for all this co's and they improved 0% after 1-2 years of abx. How discouraging. I am myself 3 years into treatment with close to zero improvement. (about 2 years in total of abx and 1 year of 'natural therapies', e.g. Klinghardt)
I second other people's opinion that it's important to stay on one regimen of abx and not switch without reason. For me cell-wall abx like Rocephin and Bicillin were useless.
Abx that I react to: doxy or mino - I herx on these - derealisation kind of feeling + wave of flu-like fatigue rifampin - keeps my bartonella "in check" propably I will restart it soon as I am now on Bactrim that plateaud. tinidazole - flare of fatigue. macrolides
And I'm infected with all of those you mentioned. Well, it's hard to know if I still am after all these years of treatment, but the ones we are absolutely sure of is the Lyme and (Something responding to Malarone).
The big question for you is, when you react, how long did it take for you to react to Mino/Doxy? A week? Month? I suspect it's sooner than later.
quote: seekhelp Reply With Quote There is some incredible information in this thread, but tough to take in. What completely blows me away is how many here can AFFORD or get coverage for 8 months of Vancomycin, 6 months of Tygacycline, a year of IV Rocephin, 10 months of double-dose Mepron, etc. Is there a bank with a teller handing out Benjamin Franklins I'm not aware of?
This could turn into a big problem for me eventually.
quote: Tosho I wanted just to clarify, that I was talking about patients that are positive for all coinfections all at once (babesia, bart myco and chlamydia). These are usually the poorest responding to treatment and difficult to treat. It's important to keep in mind that about 90% of patients improve on long term abx without so many problems. Just a note not to discourage others from treatment.
That is exactly what I noticed. My doctor says (In Under Our Skin), that his patients are coming in "more" co-infected and much sicker than there were even 10 years ago. I'm one of those 10% cases. My last LLMD said so too. I have a positive IGG and IGM Lyme test "after" about 5 antibiotics that were taken for far longer than 6-8 months in multiple 4-7 cycles. That's a long time for Lyme Disease to persist inspite of appropriate antibiotics. It's highly probable the co-infections are really holding me down.
quote: massman Einstein's definition of insanity is doing the same thing over and over again and expecting a different
I heard Dr. Wormser and Steere say the same thing when referring to treating Lyme Disease for more than 4-8 weeks. Their argument rested on "It's insane to keep treating a patient beyond the recommended guidelines when multiple multicenter double blind placebo controlled trials have shown that patients with persistent symptoms (after having had Lyme Disease), don't improve with long term antibiotics. The problem is, we have quotes that say "If you don't succeed at first, try try, try again." So which is it? So, it's a bit easy to mock the fact that patients are all at different places in their exploration of treatment. People can't try every technique all at once. There has to be a process basded on their willingness and tolerance, as well as what is probably resonable between them and their specialist. They can't be expected to just jump off antibiotics because it hasn't worked in a year, when a year and a month may have been the difference.
In my case, the same rule applies, the difference is I've hit a wall and need to rest after having done "tons" of cycles of long term antibiotics. Maybe I didn't do the IV for years, but trust me, I've done a lot, over almost a decade. Does more need to be done? You bet. Do different things need to be done beyond antibiotics? I suspect so.
[ 11-22-2009, 01:23 PM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
quote: CD57 MAssman you can't detox an infection.
I agree in respect to the issue that I've done extensive Detoxification protocols. Transdermal Glutathione, Nebulized Glutathione, NAC, ALA, Algas, Chlorella, Chelex (with DMSA), Pekana, Colon cleaning, Infared Sauna -- and on and on.
The issue for me, is the infections. I'm not "scientifically" certain, but I have a lot of lab tests showing a lot of positive infections, and I've been on a lot of antibiotics, which seem to "not" be reducing the positive testing -- at least for the Lyme.
I'm still responding to some antibiotics and antimalarial treatments, so I think it's safe to presume we're dealing with a persistent chronic infection(s).
Posted by coltman (Member # 21272) on :
quote: I heard Dr. Wormser and Steere say the same thing when referring to treating Lyme Disease for more than 4-8 weeks. Their argument rested on "It's insane to keep treating a patient beyond the recommended guidelines when multiple multicenter double blind placebo controlled trials have shown that patients with persistent symptoms (after having had Lyme Disease), don't improve with long term antibiotics. The problem is, we have quotes that say "If you don't succeed at first, try try, try again." So which is it? So, it's a bit easy to mock the fact that patients are all at different places in their exploration of treatment. People can't try every technique all at once
I see one big problem with many lyme treatments I saw from this board. -They are all mostly empirical, lets try this... then that, then this...
Compare that to CPN protocol, really clear cut, when , what dosage , for how long. Its essentially very close to Burascano guidelines(ones which apparently very few llmd follow)
There are reasons for doing what Burascano suggest , I did 3 month of research and I arrived to almost same protocol (enhanced a few points, but core idea is same - combo abx in high enough doses to be bactericidal).
Imho for chronic bacterial infection (such lyme, CPN or TB) you cannot do mono abx, you cannot do low dose, -those things breed resistance and reduce efficiency. You must use various synergistic treatments (certain supplements and drug) as alone abx are not that effective .There are chances that one single abx could be good enough -if your immune system is great and dice falls right. If it doesnt -you will likely breed resistance and are worse than before.
As an example like amoxy once a day 500 mg or so ... - with 1.5 hours HL and non bactericidal blood concentration at this does this is recipe for complete ineffectiveness and resistance build up.
Posted by seekhelp (Member # 15067) on :
Coltman, can you get on the phone and start telling all the LLMDs that? lol
Posted by keltyl (Member # 14050) on :
Well, guys. I have no idea what I am going to say Wed at my appoint now. My brain is overwhelmed.
Anyone want any messages relayed? (just kidding, of course). Posted by METALLlC BLUE (Member # 6628) on :
quote: seekhelp Coltman, can you get on the phone and start telling all the LLMDs that? [Smile] lol
Seriously, if only they all came to a general consensus to use his tools. Dr. B's guidelines is the first place I direct patients who are looking to get informed and to start the journey with an LLMD. I tell them "It's your bible." You start with that, then individualize as necessary for your specific situation.
Following it doesn't guarantee success though, since he admits that it's an open discussion and ongoing investigation. What else can we do but experiment once we've exhausted the science and we've run out of options?
My answer: ask others if they know of any other options that you may not know of. Then you exhaust those as you're able. It will take years now to exhaust the new data presented here. That's awesome, because now I'm not stuck at a dead end. However, I'm still sick, and it still sucks, but I -- like most here -- have to keep experimenting and following what little scientific and clinical evidence is available.
When evidence runs out and clinical options also appear exhausted, you can't just go "Oh well, I guess I'll just give up." Experiment, try at random if necessary.
It's not over until my pulse stops and they can't revive me.
Posted by seekhelp (Member # 15067) on :
MB, I agree having options is wonderful and experimenting when tried and true failed is absolutely necessary.
I look at like this. Dr. B is supposedly the most respected Lyme physician in the world. He treated patients the longest from what I can gather. There seem to be so many LLMDs who toss his guidelines to the side and say I can do better.
Common sense would lead one to believe anyone who subscribes to ILADS would say let's use his trials/errors/suggestions as a starting point and go from there. Unfortunately, that's far from reality. You can't 'go from there' and say OK, I'm going to use monotherapy, I'm going to cut doses down by 75%, and I'm going to ignore this/that. Now you've turned a truck into a boat.
There can be 50 reasons why the plan fails including intolerance to drugs, severe herxing, and infections/health conditions not mentioned in the guidelines. But, why not try the best practicioner's master plan first? Nearly everything in life has a best approach method. It's like re-inventing the wheel each and every time and it seems inefficient to me.
I know you've done it all. I'm making a general point as I read so many times on this forum things that grossly conflict with his guidelines, but ironically they are distributed to new members right up front. Odd.
Posted by massman (Member # 18116) on :
This says detox an infection ? "I have always advised to get the detox organs in good shape then the affected organs in better shape then attack the lyme."
That I cut + pasted from the post I composed.
I did not say anything close to detox an infection.
Will get back for other replies later. Have a web date scheduled for 3:30 with my almost 12 year old kid. She is going to teach me to do something on the web.
Posted by groovy2 (Member # 6304) on :
Hi Blue--
I did not read most of the above posts but-
Sounds like the only meds that helped were meds that go after Babs--
Maybe you should try the Chloroquine and Primaquine treatment -
It Helped me Greatly--
Babs is a Tuff bug and I did not get well until I treated it --
This treatment has started being used by some LLMDs-- and they are having good results --
Do a search on me #6304 and put Primaquine in the search box--
I have written Many posts about it--
From what I hear the people that have used this treatment did not have as Bad of herx as I did and had good results -- Jay --
Posted by METALLlC BLUE (Member # 6628) on :
I received a reply to my letter I sent to my LLMD. My letter was posted further back in the thread on October 10, 2009 10:41 AM
" Hi Michael, Per J, The update was appreciated. If you prefer to follow up with your Primary Care Physician for treatment of tick bourne illness, that is fine. If you have any other questions or concerns, you can call the office. (Insert Phone Number)
Thank You"
Basically, what I get from his response is "Do what you've gotta do."
I can return when I need to, so doing the Levaquin trial, Malarone and following up as I learn more will help. I need time to do research, rest and figure out what other steps I might take while using the Levaquin.
Posted by JamesNYC (Member # 15793) on :
Coltman,
What is with you?
Have you even seen a LLMD yet? Your anecdotal, skimpy research may convince you, but you are no LLMD and no Dr of any kind.
You have all of 3 months of "research" and you think so much of yourself that you know better than LLMDs with real world experience treating real patients? Now you're a freaking expert?
You have barely any experience even HAVING the disease, IF you even have it. You're hardly convinced you have lyme.
Collecting info is not the same as having experience. You don't seem to understand that.
Posted by coltman (Member # 21272) on :
quote:Originally posted by JamesNYC: Have you even seen a LLMD yet? Your anecdotal, skimpy research may convince you, but you are no LLMD and no Dr of any kind.
You have all of 3 months of "research" and you think so much of yourself that you know better than LLMDs with real world experience treating real patients? Now you're a freaking expert?
Certainly not . It is amazing though that in 3 month of research you can learn a lot more about the problem(and around it) than many MDs learned about it in their whole life (mainly because they do not have any stake in the subject)
Not considering myself and expert, but I do think I know the reasons behind Burascano protocol guidelines in more depth than you ever cared to know , if you can bring forth the argument why bid 500 mg amoxy is effective(or some such "abx" protocol) - I listen, just please care provide links to research papers you base your opinion on.
I'd love to hear about flaws in my "anecdotal skimpy research". - I certainly could miss or misunderstand something, after all 3 month is short time.
You on the hand behave like a troll - instead of presenting actual arguments you resort to ad hominem attacks and appeal to authority. You can stop waving your "you are not llmd flag" - you are not one either.
quote: You have barely any experience even HAVING the disease, IF you even have it. You're hardly convinced you have lyme.
Really? I think you are the one deluded here as you have no idea about my experience and length of it . And btw dont you have only 41 band positive, yet apparently you are beyond any shade of doubt.
quote: Collecting info is not the same as having experience. You don't seem to understand that.
"Having" experience is having an MD near your name and practicing for many years? Why you even here? Got to your MD ( I suggest IDSA ones - they have most impressive credentials!). Stop trolling around here then
You seem not to understand that regardless whether you have formal credentials ,regardless of how many years sitting behind the desk signing same papers and doing exact same thing it will not magically make you know more about the problem
Facts are facts.If we talk chronic lyme here - there are tens of thousands of papers on pubmed you can read. You can read about each specific abx, their mechanisms of actions, clinical trials results, specific treatments. -you seem not to understand the simple fact that regardless who prescribes the drug it works the same(whether your are "llmd" or not)
Having said all that - I do not in fact claim I know more about chronic infections than "all LLMD". I am just saying give me a good reason to why to deviate from Burascano guidelines if you treating chronic persistent infection such as BB. Not empirical and personal ones, but real facts why exactly you want drop drug or low dose it.
In fact there are papers out there suggesting that Burascano guidelines might be too conservative in some areas if we talking about treating persistent neuro infection with spirochette.
Posted by kim812 (Member # 17644) on :
MB- I never sent JF a letter stating I was trying elsewhere. I don't think he would have cared if I came back or not.
I don't even think he knows I haven't been out there since April...I probably should have just in case.
They did charge me alot of money to have all my records sent to my new doctor though.
Anyway at least he replied to you and he was always good at getting back to me everytime.
Good luck with your treatment.
I was on Levaquin for 3 months back in the summer of 07 and I had a sore throat for 10 months and the levaquin made that go away but that was about it.
Take care Kim
Posted by sutherngrl (Member # 16270) on :
Coltman, I don't think there can be one set protocol for what we have. Just like ppl with AIDS, we have so many factors in play. There can be no one size fits all protocol. There are a million reasons why.
I have nothing against Dr B's guidelines as a place for doctors that have never done their own research to start. But my LLMD has researched LD for 30 years. Why should he need Dr B's guidelines at all? He has all the information through personal experience, through pathological and clinical experience of his own.
I don't want a one size fits all protocol myself. I want a doctor that "knows" LD. Has years of experience and uses that experience to heal me. Not a copy cat doctor that follows one mans guidelines because he has not taken the time to study patients and results himself.
Coltman, I do think you have done a lot of research, as we all have. But until you have gotten deep into treatment you are lacking the personal side of it all. There is a difference between reading, comparing and actually treating LD. Its not nearly as simple as you would hope it to be.
Posted by METALLlC BLUE (Member # 6628) on :
Can I use Levaquin in combination with Tetracycline?
Posted by METALLlC BLUE (Member # 6628) on :
Also, I'm still on Malarone treating the Babesia. Would Levaquin and Malarone cause a problem? My doctor had me on Factive and Malarone. Factive is in the same family as Levaquin.
Posted by Hoosiers51 (Member # 15759) on :
I ran Levaquin, Malarone, and Tetracycline through www.drugs.com's Interactions Checker.
Tetra/Atovaquone (in Malarone) is a moderate interaction:
"tetracycline ⇔ atovaquone
Applies to: tetracycline, Malarone (atovaquone/proguanil)
MONITOR: Concomitant treatment with tetracycline has been shown to reduce atovaquone plasma concentrations by approximately 40%. The mechanism of interaction is unknown. Therapeutic failure may result. MANAGEMENT: Clinical response to atovaquone and parasitemia should be closely monitored in patients receiving tetracycline"
So I'm thinking it's okay, because if you prefer Malarone to Mepron, it is probably the Proguanil in Malarone that is benefiting you more anyways.
Also had this to say about tetra and food:
ADJUST DOSING INTERVAL: Administration with food, particularly dairy products, significantly reduces tetracycline absorption. The calcium content of these foods forms nonabsorbable chelates with tetracycline. MANAGEMENT: Tetracycline should be administered one hour before or two hours after meals.
Then of course it says take Malarone with fatty meal....which you would especially want to do if the integrity of the atovaquone is already being compromised by the tetra.
I would check with a doctor too though. They say using Mepron will lower Levaquin's effectiveness, even if you use it later on.....so I don't know if together that effect would be worse.
That is LLMD knowledge...you'll find people talking about it on LN if you search.
Posted by METALLlC BLUE (Member # 6628) on :
I'm reading portions of one of the books: "Insights Into Lyme Disease Treatment."
It's pure gold folks. Everything we're talking about here (much of it anyway) is talked about in that book, including dosing, combinations and the specific therapy (drugs, herbs, supplements).
I would recommend it to anyone struggling like I am.
Posted by coltman (Member # 21272) on :
quote:Originally posted by sutherngrl: [QB] Coltman, I don't think there can be one set protocol for what we have. Just like ppl with AIDS, we have so many factors in play. There can be no one size fits all protocol. There are a million reasons why.
There is one for CPN (infection very similar in many ways) , people use successfully for treating MS. I don't see good reason why there is no consensus for TBD protocol.
There are many variables regarding other co-morbidities and individual patient needs true , so treatment for other conditions /approach may vary but when we talk about specifically BB I dont see a good reason why not use something with a proven base
All in all I can see why Dr's doing it (many different reasons), but I dont think they act from the point of view of most effective treatment.
quote: I have nothing against Dr B's guidelines as a place for doctors that have never done their own research to start. But my LLMD has researched LD for 30 years.
Why should he need Dr B's guidelines at all? He has all the information through personal experience, through pathological and clinical experience of his own.
Well there is extremely solid basis behind what Burascano has written in his protocol. I have read it on my first day I started researching lyme, but only now I started realise whole depth of it and why it is the way it is. Burascano doesnt describe it there in details as it is not in the scope of his guide.
But once I started researching how abx work (I researched pretty much every single group of abx and in many cases particular drugs) ,what are mechanisms of antibacterial action , abx resistance, action against specific bacteria (I researched TB,BB , syphillis, CPN) there is much more than meets the eye in the selection of drugs and dosages.
It is complex and complete system ,and I frankly don't see good reason for dramatically altering its core -as it is based on solid research. I can see several ways it could be improved and built on though.
And btw its no coincidence that CPN protocol (there are few variations but they have same core) is a mirror of Burascano, even though it is made by different doctor. There are certain things that must be covered when you treat persistent bacterial infection -and both those protocols are in consensus about this.
quote: I don't want a one size fits all protocol myself. I want a doctor that "knows" LD. Has years of experience and uses that experience to heal me. Not a copy cat doctor that follows one mans guidelines because he has not taken the time to study patients and results himself.
Well its great if you have a doctor who studied the probem in depth and arrived to effective treatment protocol. I think somebody like lymeMD guy is probably very knowledgeable and has a lot of experience (and btw he does generally uses pretty Burascano like approach)
There are many factors though why a great doc might not do best treatment for you -he has lots of other considerations . Some of them are liability and medical boards issue, some of them are because of his experience with other patients (which affects your treatment too- no matter how much in common you have or not have with them).
It is same issue as with other MDs in general -it is safer to do as little as possible, it does not pay to be aggressive in the field of managing outpatient care , specifically chronic diseases and lyme in particular.
It is a consensus among docs (yes even around LLMDs) that if you are not in danger of dying any time soon you are ok. There is approach of "minimally effective treatment" adopted so deep at the core of medical profession (and a lot of medical research field too, sadly) that I believe it produces treatments(or no treatment at all) which serves as breeding ground for chronic conditions and untreated permanently ill population
quote: But until you have gotten deep into treatment you are lacking the personal side of it all. There is a difference between reading, comparing and actually treating LD. Its not nearly as simple as you would hope it to be.
Well there is are several reasons I did not start a treatment and "not have personal side". For one I wanted complete the testing and confirm most likely cause of my problems, that was(and to some degree still is ) a research subject on its own, -there is vast array of diseases out there which have similiar clinical presentation, it did require a lot of reading and researching into them .
It also required tests to be done - that was most time consuming part as it took several appointments to cover the minimal grounds, I received my igenex results only yesterday)
Immune system is a huge topic as well - and I frankly not anywhere close to solving it , there appears no consensus about it , immune system fine works are generally still a mystery .Most of the information out there is of descriptive nature, there are very few effective methods of using it for treating disease (aside extremely crude approaches such as corticosteroids and interferons). Effectiveness of immunemodulation is mostly empirical - there is no clear understanding exactly how it is achieved .
There was also a very big question of whether the aggressive abx protocol is worth the risk vs its potential benefit ( there is an option of just correcting the damage with symptomatic treatments , which ,too, needed to be investigated).
There are many ways to screw things up and make it worse and I wanted research alternatives and option before making final decision
I want be comfortable with it - know why I am doing it, why it works and why it might not work. Several approaches were to be researched (alternative treatments salt/c ,MMS, rife) and MP (MP is in a class of its own) . ABX protocols themselves had to be researched. Lots of grounds had to be made before I could arrive at some conclusive point.
So I wanted personal element out of it. I will not be doing because somebody somewhere thinks it might work or some anecdotal evidence on the internet. Personal investment muddies the waters -once you commit to something it is harder to correct mistakes. So before commitement I want to know as much as possible
Posted by ping (Member # 6974) on :
Tetra/Atovaquone (in Malarone) is a moderate interaction:
"tetracycline ⇔ atovaquone
Applies to: tetracycline, Malarone (atovaquone/proguanil)
MONITOR: Concomitant treatment with tetracycline has been shown to reduce atovaquone plasma concentrations by approximately 40%. The mechanism of interaction is unknown. Therapeutic failure may result. MANAGEMENT: Clinical response to atovaquone and parasitemia should be closely monitored in patients receiving tetracycline"
So I'm thinking it's okay,...
I'm just now getting to read this thread...
Hoosiers - NO, it is not okay. I ran into this interaction a number of years back when using Mepron and Minocycline. Any drugs related in either "family" will have this reduction. MB - Don't waste your money with this combo. Find one that doesn't interact in this way or you'll be spinning your wheels, again. I figure you're already stressed out and depressed enough.
coltman - All are entitled to their opinions here, as am I, so I'm going to state mine. I think sutherngrl showed great charity and was accurate when she said that you "don't have the time in" to be experienced enough on a personal level to be aware of many things. (However, leave it to a New Yorker, like JamesNYC to really let it rip.) We are all well aware that you've researched your lil' heart out, but the time factor really is very, very important; eventually, you will understand this. BTW - Have you seen an LLMD yet?
ping "We are more than containers for Lyme"
Posted by METALLlC BLUE (Member # 6628) on :
I have an interesting question. In the new book "Insights Into Lyme" I was reading a section regarding "why people don't get well."
I felt deeply unhappy (with myself) when everything that was mentioned was pretty much a perfect description of me. Only the issues weren't about the factors surrounding the disease, but rather the personalities of patients that contribute to their downfall.
People who are defined by their disease, or who are unable to "push" through the pain by going on with their life. It goes on to discuss a lot of things, but it made me feel guilt and sadness. What if I'm just weak psychologically and the reason I'm not getting well is because I'm isolated, lack spiritual direction, and all the things that were mentioned.
He goes on to say "People who spend all their time talking about Lyme and posting on the internet" are the ones who stay sick. One of the answers was that those who get caught up in the details and ask "How/Why" questions about the technical workings of treatments or of the disease don't get well.
Does anyone know what I mean? I mean, I feel that I'm held hostage by my condition. It impacts every decision I make, from how long I wait to go to the bathroom, to whether I clean the dishes in the morning.
Does this same concept apply to someone who has been sick their entire life almost? I mean, I fought for over 10 years getting up every morning while sick with this disease. I found hard, and when I was first diagnosed, I fought hard for a few years too. I found the harder I pushed, the harder the disease pushed back. It knocked me down hundreds of times (If not thousands) and as bullheaded as I was, I kept getting back up. Finally, I didn't get back up, because I realized that it was irrational and was only causing me pain to keep trying to live beyond my ability.
I'm not sure what to think. I feel guilty sometimes, for not fighting harder. I often feel depressed and don't have the energy to invest as heavily as I'd like in research. I've read almost all the studies. I've read many of the books. I take the medicines as prescribed and I try "hard" to believe in meditation (which I can't seem to do easily), and I've tried to eat right, drink tons of water and do everything I was told, but nothing actually helped (permanently). Nothing made me feel better than 50%.
I'm just not sure what else I can do.
Posted by D Bergy (Member # 9984) on :
I think they simply are stating that you are not going to know all of the what's and why's about the disease and the treatments. Don't get bogged down in the details, too much.
You will know when you are getting better, and why is not unimportant, but getting better is more important.
I guess that is why I am doing the research and treating for my wife. She does not know why I do what I do, and I know partly, but we have to see from results what works in the end. A theoretical cure is only that. In the end you have to do something, even if it is not 100% correct. You learn on the way.
I use the old football analogy. Keep doing what you are doing, as long as it works. When it quits working, do something else.
Dan
Posted by D Bergy (Member # 9984) on :
Some people just are much sicker than others also.
Do not take it as a personal failure. It is the nastiest disease I have dealt with and it is not easily resolved or treated much of the time.
You can improve one way or another. It just is not going to be easy or fast.
The first thing to put in your mind is that it can be done.
Dan
Posted by sutherngrl (Member # 16270) on :
Metallic, From what I can see the majority of Lyme patients are the strongest, toughest people I know. LD is such a contriversial illness, so in many ways that makes it different from many other illnesses.
We have no choice but to get consumed in research. Its our survival. We can't depend on mainstream doctors to help us, so we become consumed with LD because it seems the only way we will ever get our health back.
However, I also get what the book is saying. I have discovered that I have to take breaks from reading and talking about Lyme. I find ways to take my mind off of it, if only for a few hours a day. I also take days off from LN so I can completely clear my mind of illness. And this does aid, I believe, in healing.
I too feel that I am held hostage by this illness. It is hard to find any normalcy in this life of LD. Everything about it is bizarre!
Posted by ping (Member # 6974) on :
quote:Originally posted by METALLlC BLUE: I have an interesting question. In the new book "Insights Into Lyme" I was reading a section regarding "why people don't get well."
I felt deeply unhappy (with myself) when everything that was mentioned was pretty much a perfect description of me. Only the issues weren't about the factors surrounding the disease, but rather the personalities of patients that contribute to their downfall.
People who are defined by their disease, or who are unable to "push" through the pain by going on with their life. It goes on to discuss a lot of things, but it made me feel guilt and sadness. What if I'm just weak psychologically and the reason I'm not getting well is because I'm isolated, lack spiritual direction, and all the things that were mentioned.
He goes on to say "People who spend all their time talking about Lyme and posting on the internet" are the ones who stay sick. One of the answers was that those who get caught up in the details and ask "How/Why" questions about the technical workings of treatments or of the disease don't get well.
Does anyone know what I mean? I mean, I feel that I'm held hostage by my condition. It impacts every decision I make, from how long I wait to go to the bathroom, to whether I clean the dishes in the morning....
MB - One of my old LLMDs called it, "Caught in a Loop", with regard to how Lyme pts minds are affected. Most highly infected pts have this problem and it's almost impossible to just "snap out of it", as that book might portray. If you were someone just a couple of months into tx and complaining, then the mentality/personality aspect would fully apply to you, but, in your case, after how many, 7 or 8 years of tx, no wonder you're fit to be tied; you're exhausted! Anyone would be. I was, after 7 years of it. (Been off abx for almost 2 yrs.) As you said, the disease takes over your entire life...There's no way around it!
Does the person who wrote that book have Lyme? Or in remission from TBD? If the answer to both of those questions is "No", then, please BURN THE BOOK! I know what it's like to be isolated with no direction and stuck as a bug on fly-paper; I've been sick all my life too. Of the vast majority of my friends/acquaint., they have Lyme, or HCV, etc. and they don't and won't take near the initiative as I have and do and as you are to get well! This has been such a stunner to me. They refuse to do in depth research and endeavor to get well, instead, they call me on the phone and ask me for answers. I tell you, MB, I'm at the point of just not answering the phone anymore and wanting to start completely over again.
As for communicating on the internet to those of us who have your kind of experiences / illnesses, or to an otherwise 'healthy' person, what the heck are you going to talk about with a healthy person who has no blooming onion of an idea of what chronic illness is like? And can you do the things / keep up with someone who's healthy? NO! I highly suspect this book was written by a relatively healthy person who can do as he or she likes. MB - YOU'RE NOT ABNORMAL FOR YOUR SITUATION! If the author were ever in your situation, they'd feel the same way, okay!
If you want all this to stop, the number one thing to do is to explore and actually take avenues to get well, which I think you are doing. I also think you're what we call in Texas, "dog tired" at the moment and on a guilt trip for being sick. Please, please, for you and all of us 'friends of you' here, the first thing you can do is to stop reading the freekin' book!!!!!
I work a 40 hour a week job; blessed to have it, absolutely hate the type of work, many of the people and at this point, I've learned to accept it. Meanwhile, as my TBD has abated, I've enrolled in Beginning Ballroom Dancing one hour per week (I used to be well-advanced) and am learning about investing money (as if I really had any money...I have this old, rich auntie who could kick-off any time and I need to be ready. Don't know how much she's going to leave me though...No, really, I'm serious.) Do as much forward-thinking as you possibly can. You might only be able to pick one thing to focus on and that's all you need. (Remember what Billy Crystal said in City Slickers?) Just that one thing, for now. Doesn't have to be that one thing the rest of your life, just for the time-being. This is all you can do for now, MB.
You can't think your way out of this illness and I'm so damned sick and tired of hearing this crap from everyone. It's another spin-off on the, "it's all in your head" doctrine. It's the toughest kind of ridicule people like us have to deal with; which is not being believed. Here's the catch for "the others" though, MB.... Everyone is going to get their turn! I can almost guarantee it! Less than 5% of the people on this planet die quickly (in their sleep, or drop dead, etc.). Most contract some type of infirmity and suffer slowly until it's done. What I'm saying isn't cruel, it's just a reminder to myself that some day, they will know what it's like and I don't have to explain anymore. Over time, my explanations to people have become less and less, due to this realization.
So, aside from posting here in Questions so you can find a tx combo that helps you, please go over in Off Topic and post something completely unrelated, as if you were well and wanted to do something, travel somewhere, whatever. I know it's difficult, but FORCE YOURSELF! Just one thing. I'll post to your thread and I'm sure others will join in.
AND STOP READING THAT G - DAMNED BOOK!
ping "We are more than containers for Lyme"
[ 10-14-2009, 04:38 PM: Message edited by: ping ]
Posted by METALLlC BLUE (Member # 6628) on :
Thanks for the commentary on the book. I still am not entirely sure how I feel about what I read. I re-read the material to my girlfriend (who also has this illness) and she seemed to feel that what the doctor was saying is relevant but not in a personal way. I felt that she was saying what sutherngrl and ping were saying about "being stuck."
I still feel ambivalent. I personally feel that I'm so burned out and "dog tired" as ping said, that it's easy for me to feel guilty about suddenly slowing way down and feeling this almost quiet despondent acceptance shadowing over me. It's one thing to accept your present circumstances (which everyone tells us we should do), but at the same time never accepting the situation as permanent and irreversible. I just don't want to fall into that trap. Many here have said "I keep fighting and pushing myself, even when it hurts -- through the pain and exhaustion, because I know if I stop, I'll just die." Is that me?
I feel like I'm slowly giving up. The reality is that I am most certainly discouraged and my faith has taken a devastating blow the last year or so. I moved into a very (seemingly) rationale perspective of the world. I went from a devote spiritual person practicing many faiths (Mostly Christian at the time), to "It's a fanciful illusion to think any outside forces other than mere probability were dictating my life, and thus meditation and prayer became unmotivated processes. It was as though I couldn't find the will to connect since I felt there was nothing to connect to. I stopped trying to live for something more.
This isolated feeling has certainly played a role in increasing depression, isolation and the decreasing ambition to "push" for a future beyond living to work, buy a house and live the life that most people take for granted. It was as though my dreams and ideas about idealism died too.
This isn't my fault though -- not a personal shortcoming anyway, I've tried very hard to take advice, and to do what I thought were the right things. I tried to be faithful and to maintain whatever stability I could.
I feel as though I am really stuck, but......... I just don't think I'm the type of patient who doesn't get well because of how stuck I feel "now". It's true I've worked with the wrong doctors and that while people were encouraging me to move on, I dragged my feet because of trust issues. The doctor kept telling me "Everything will be just fine, keep going, it takes time". 5 years later I was still sick!
It's true I had all the same difficulties that many patients have, and that I am obsessively ambitious about keeping my doctors updated, and recording symptoms, my lifestyle changes, diet and other issues, but it's all waning now.
Yet, the "treatment fatigue" is also true -- I've invested myself fully in recovery only to see a gradual eroding of that fire within.
People have told me for a long time to never let that fire burn out. They said, you've got to stay bright and ferocious and keep fighting. I think I've done that to the best of my abilities, but I'm just not sure anymore what I'm fighting for?
Am I fighting for the sake of proving a point? Am I fighting so I can move on with my life and forget about everyone else who is struggling? Am I complacent and tired?
There is a song that comes to mind that goes:
When all I have is on the floor divided And I'm a world away from peace Behind your eyes is where I know I'll find it Who you are defines my dreams? You already take me there.
Well I'm a broken hearted man, complacent and tired I've been knocked out of the ring I've played the fool for long enough to fight it It's in your arms I find my place.
This song is a spiritual one. The person is basically talking about external and internal struggles we all go through in our lives, but also knowing they have a rock or anchor in God to hold onto. I just don't have that anymore.
I love my family, girlfriend, friends and certainly myself -- that's why I'm trying to find answers in this post. I'm just so tired.
I've even grown to tired to edit my post, so if some of it is rambling and confusion, ....sorry.
Posted by Vermont_Lymie (Member # 9780) on :
MB,
Wow, just read your post above -- what a moving spiritual song.
Sorry that you are so tired. Hope that we can all take that load from your shoulders for a few minutes so that you can rest.
I have always said that TBD treatment is a leap of faith, 'cause it takes so long to see best results. Rest and then come back to it when you can.
On a practical note, I wanted to ask:
Have you ever tried the Buhner core protocol herbs with antibiotics?
The cephalosporins (oral) have gotten me better, but adding andrographis, resveratrol, and cats claw clearly improved the efficacy of antibiotic treatment, for me.
The best protocols are ones with multiple abx/herbs at the same time, though the herxing can be rough at first.
[ 10-14-2009, 08:11 PM: Message edited by: Vermont_Lymie ]
Posted by seekhelp (Member # 15067) on :
Ping, that was quite a post. Wow, I agree. MB, I wish I had better words to say, but I just wanted to commend you on your efforts to date. You seem like one dedicated person. Don't kick yourself please.
Unfortunately most people are too ignorant to understand. I, like you, will not accept this as my new life. If I were you, and I'm not, I would do rife. Go outside the box. This is if you see no improvement with your Bartonella Tx.
I'd have no reservations about out of the box treatment protocols after 7 years. Hell, I'd strongly consider Germany. Just the fees from your current doc probably run up eventually to that point. Go down fighting. Yeah, stop to pick up new weapons occasionally, but keep fighting.
Posted by catskillmamala (Member # 12536) on :
Metallic Blue,
I haven't read all of the posts in this thread, or the book Insights Into Lyme (I will- hubby owns a bookstore), but I just wanted to share my experience:
When I was sick I ate, breathed and slept lyme. My family thought I was crazy. I spent every minute I could reading and researching. I started a lyme support group in my county. I was online contantly, lurking more than posting. I was CONSUMED. I was taking dozens of pills per day. I tried many combos (not as many as you).
My husband finally told me that he couldn't stand talking to me, he'd come home from work and I'd start talking about lyme. I told him, "Researching Lyme Disease is my FULL TIME JOB." I had my life taken from me and I HAD to figure it out.
I think I did figure it out. I was on abx (oral and IV), I did herbs, I bought a rife machine (and used it-still do). I am better. I've been off abx since August 18th and so far, so good. I can DRIVE! I am working full-time. I can parent.
I am not as crazy about researching lyme and every co-infection. But I still check in on lymenet, I still run a support group, I still try to raise awareness everywhere.
My point is this- they told me it was all in my head, that I was obsessed, that I enjoyed being sick, that it was psychological, blah, blah, blah, but now that I'm better, no one says that. They say "wow, you did a lot of research and really pursued aggressive and alternative treatments, no wonder you are better and my (friend, neighbor, relative) isn't."
If you are really sick, spending your time researching and learning and trying to get well is a sign that you are NOT crazy. You are trying to get better and it may be easy for people who don't know illness they way we do to say that you're stuck and that it's a personality thing keeping you from getting better, but if that's true, what changed in my personality after 2 years?
Posted by METALLlC BLUE (Member # 6628) on :
Guys, thanks so much for standing by me and saying this stuff to me. I really think you guys are helping me a lot here.
I suppose I doubt myself and feel a lot of these things because -- ....anyone in my (our) situation would.
I'm going to follow thru on the Bartonella treatment. My girlfriend told me she also would like to see me go to Germany, but the time frame isn't right. She's going to Germany in November and her family is paying for the necessities. I know they want me to go so I could save all that money and just pay for the medical care.
I wish I could do it, but the time just isn't there, especially with how I'm feeling. I am considering it seriously though, but I think if I have to pay, I'll pay later.
She also feels this is best, and she told me the Bartonella treatment I'm considering is good. She said "Keep it simple" -- just do the Levaquin, Magnesium, Malarone and that's it for the "core" direct treatment. Obviously supportive aspects, like probiotics and my "symptom" reducing meds, like Nystatin, Welbutrin and such will continue.
I feel this is the best direction right now too.
I said this to my girlfriend early this morning:
[08:28] MB58SC: I really am just super tired, and I think when I'm mentally able the motivation and hope will turn back on.
[08:29] MB58SC: I think when you've been screwed for so long and stuck after trying so hard so many times, you just get knocked down and stay down for a bit longer each time.
[08:29] MB58SC: But, if you're tough -- like Rocky tough -- you'll get back up, even if you lose some fights.
[08:29] MB58SC: It just will take "longer" to get up this time.
So, I think that's the bottom line. I'm afraid of not getting back up, but it's not in my nature inherently to stay down permanently -- but even iron can be bent and broken, so if I stay down longer, I don't have to feel guilty knowing it won't last.
If someone else stays down, who am I to judge? They have their reasons. Maybe they were knocked down and finally knocked out. We're not unbreakable -- but... I'm not broken yet.
Posted by Abxnomore (Member # 18936) on :
Hi Mike,
I strongly disagree with what was written in that book and when I read stuff like that it really angers me. What choice do we have other than to stay connected with other folks who have Lyme and research and learn? Only those who suffer with this illness can truly understand the depths of loneliness and despair it can bring.
Even with the best LLMD's we have to educate ourselves about his illness and stay up on research. It would be a great luxury if circumstances were such that we did not have to but we do.
I think you are doing and have been doing a great job at trying your best to feel better. There are times when this illness may temporarily beat us back a bit and we need to take a mental break and regroup but in reading what you have written and corresponding with you there is no doubt in my mind that you are handling this just the way you should be and with courage and strength.
These feelings of guilt are normal, but they are just passing phases. It sounds to me like you have a plan and I truly hope it brings you some improvement.
If it does not, I am 100% sure you will find another approach as there is one thing I have learned is that there are always options even when we think we have exhausted them.
Hang in there. You are to be commended for being such a fighter and such an excellent thinker and researcher and also for personally contributing so much to this site.
Better days are in store for you.....I know you will never give up! It's not an option and we won't let you Posted by ping (Member # 6974) on :
quote:Originally posted by catskillmamala: My point is this- they told me it was all in my head, that I was obsessed, that I enjoyed being sick, that it was psychological, blah, blah, blah, but now that I'm better, no one says that. They say "wow, you did a lot of research and really pursued aggressive and alternative treatments, no wonder you are better and my (friend, neighbor, relative) isn't."
If you are really sick, spending your time researching and learning and trying to get well is a sign that you are NOT crazy. You are trying to get better and it may be easy for people who don't know illness they way we do to say that you're stuck and that it's a personality thing keeping you from getting better, but if that's true, what changed in my personality after 2 years?
Yes, Yes, YES!!!! Absolutely / Precisely! They are NOT the one's who are ill! They don't understand!....Yet...(Remember, everybody will get their turn. No one gets out of life alive.)
Bravo to Abxnomore and others as well.
MB - Try to rest. I know letting go for a while (not forever) is difficult, but you're obviously exhausted. STOP READING THAT BLASTED BOOK!
ping "We are more than containers for Lyme"
Posted by coltman (Member # 21272) on :
Hey ping, for some strange reason I get the impression you'd maybe like MB to stop reading the book?
I don't know...I could be wrong though.
Posted by D Bergy (Member # 9984) on :
I have been doing a little experimenting with the XMRV virus, using frequencies.
The treatment produced no reaction at lower Hz frequencies. When I converted the frequencies to the Mhz range the frequencies made me itch, and my Terminal Ilium got sore with the first four frequencies.
The Terminal Ilium is one area where my Crohn's has been active in the past.
Since this area is probably sensitive already, the results are inconclusive. It could be that any high frequency would irritate the area, or it could be that the specific frequencies actually were hitting something.
I am going to do this for a few more days and see if I can determine anything more concrete.
This is an interesting virus, that has the potential to cause many conditions. It is all speculation at this point.
Dan
Posted by Lymeorsomething (Member # 16359) on :
I can't be certain but I really think Levaquin helped me. It gave me a sore achilles' tendon on one heel during treatment but I did notice some improvement after finishing a course. You just have to watch and not push too hard with the exercise while on it. If you think it helped, it may be worth another course.
Posted by TerryK (Member # 8552) on :
Sorry you feel discouraged Mike. It would be a miracle if we didn't get discouraged at times.
I've had doctors (not LLMD) ask me when I'll give up looking for answers. My response is NEVER!!! It's not in my nature to give up.
You seem to be cut of similar cloth. You may need a rest now and again but I don't see you ever giving up. Just the fact that you posted this thread indicates that you are continuing to look at your options.
I often hear doctors blame the patient for not getting well under their care. I will objectively (to the best of my ability) entertain any and all reasons that a doctor *thinks* might be hindering healing and address the issues if I feel they are part of my problem but I am not willing to blame myself for not getting well.
I followed the treatment protocol of one doctor for over a year and I did have improvement but didn't get well. Later I got my medical records from her office and read in her chart notes "Why won't Terry let herself get well." She was assuming that her treatmet for yeast should have gotten me all well. I was never treated for infections of any kind (besides candida) and I have many that I had for decades by the time I got to her.
The reasons patients don't get well is because they have not received the right treatments for their condition. Genetic issues, lifestyle issues (the right food etc.), and yes emotional issues are all part of it but most importantly is finding the right treatment for the underlying causes.
The only way to find all the issues is to keep looking. I commend anyone who continues to empower themselves by educating themselves and looking for answers. Many of us would not be here today if we were not the "personality" types that we are. I embrace it!!! I appreciate it!!! And yes, I try to strike a balance.
Appreciate yourself for your many positive personaly traits and your considerable talents. Work on those things that you feel might be hindering you but try to NEVER blame yourself for being sick. Borrelia and other infections are why you are sick.
Terry
Posted by dan67 (Member # 20344) on :
The key is balance. Too much focus on Lyme, and one can't "see the forest for the trees". Mental health is negatively affected.
But too little focus on Lyme, and one doesn't do enough to get well and may even be out and about staying up late, eating crap food, and asking to just get worse and worse.
Balance.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by tosho: MB, you mean this Bionic thing ? That's the last thing I would consider to do. I read somewhere here that people paid ca. 8000$ for this machine. I am afraid the actual cost of the machine construction is just a tiny part of this price, the rest goes straight to sellers' pocket. The statement of this dr. in Germany that says you are Lyme free after Bionic course is a pure lie in my opinion.
Quite honestly, I don't care if it cost them one penny to make the machine and the rest was profit, I'm 100% well and the person who made the machine earned their pay!!!
Posted by sixgoofykids (Member # 11141) on :
I think I both agree and disagree with the comments about getting well. I personally NEEDED the people on Lymenet to tell me it's all going to be okay and to tell me what I was feeling was normal. Lyme is very lonely and I needed the camaraderie of Lymenet.
On the other hand, I think you have to have a positive outlook to get better. I always knew I'd get better. I never questioned it. I admitted when I felt bad and rested (no, I think not pushing through is sometimes the best option), yet, I did not admit defeat.
I did own my disease. I owned it, it did not own me. I am a Lyme survivor, just like there are cancer survivors. I had to accept it and take ownership of it to admit I needed to fight it. That's how my mind works. I am better, yet I am still here posting as I can to give back.
For a while, yeah, I was pretty much defined by my disease. I was totally disabled, how could I not be?
Posted by CD57 (Member # 11749) on :
Metallic, for what it's worth, that comment that the LLMD made in the book really ****es me off. He made this exact comment to me when I started getting sicker on his protocol......it felt like a way to put the responsibility on me. Because I didn't have the right attitude? I never (or rarely) questioned his decisions, just brought some ideas to the table. But because I declined, it was apparently my fault.
Please don't take that comment in the book to heart. I haven't given up and I don't expect that you will either. I am pursuing some lines of treatment that I never in a million years would have considered because guess what? I'm not giving up.
Posted by CD57 (Member # 11749) on :
I think what TerryK said about the immune system is key.
I am just now learning about all this stuff. I am working with an LLMD who knows it and believes the key is to "rev up" the immune system to kill the bugs and then pulse therapy until the immune system comes back online. I believe the words he uses are "immune reactivity" vs "immune containment". As therapy progresses, he looks for immune containment.
I am definitely in "revved up" and reactive mode right now, which is not a nice place. But I look forward to my immune system coming back online...I honestly think that is why my treatment to date hasn't worked. I don't even think Lyme is really a problem, it's this BLO thing that is causing the problem. In a body that has 500 trillion organisms in it, why should this one thing be able to cause so many problems?
What I have learned: some Lyme patients seem to treat, herx, and then get better. Neat as pie! An immunologist I saw last week said "if you treat an infection with the right abx, you get better. If not, something else may be going on, like an immune problem". In my case, I'm pretty sure it's my immune system. So I'll need that corrected. It hasn't happened for me by constant use of abx, no breaks. Hoping the new direction will work.
Posted by METALLlC BLUE (Member # 6628) on :
Ok, let's all run an update! Those who have seen their doctor since originally writing here, please tell me what you've learned.
I've now done this protocol for one month:
Malarone 100/250mg x 2, Lamictal 200mg x 2, Ativan 2mg x 1, Pentasa 1g x 2, Wellbutrin 200mg x 1, NSI Magnesium 300mg x 2, Levaquin 500mg x 1, Nystatin 500,000U, Saccharomycin DF 2 caps, VSL #3 Capsule x 1. Armor Thyroid 60mg x 1
The only two things that are "new" for that 1 month however, was the Levaquin and Magnesium. Little progress has been seen - if any. Some sore achilies heal and tenderness was felt, but is generally harmless and has alleviated. Insomnia worsened temporarily but has improved somewhat. Last night I slept the entire night without waking, which is rare -- however, I also dreamed that my father died and I experienced intense grief. When I woke up, I was so shaken that I wanted to call my father.
I "did" sleep the whole night though! I doubt this is progress from treatment though.
Did most people who achieved success with Levaquin not see results early on (1 - 2 months?)
I see the PA of my LLMD's office on Novemeber 19th (Next Thursday). She and I have a much better relationship then I have with the N.P. or the main LLMD She will surely help answer my questions.
In my next post I need a little help. I'm posting the update I'm writing for the PA and would like others to review what I'm going to be saying.
[ 11-22-2009, 01:23 PM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
Here is the written portion I need reviewed. If I've left anything out, please let me know.
Special Note: I saw you last on [04-28-09]. ``Since my last appointment with the N.P. and my primary LLMD, they discontinued just about all aspects of treatment. I expressed that I was burned out and was ambivalent and anxious about going to IV therapy. I was concerned that I might put so much effort into getting the port and treatment and still probably relapse in the end. Obviously, I had treatment fatigue. I took a much needed a break and wrote JF to inform him. I do not and still do not think IV Doxycycline or IV Rocephin is the right drug choices based on my history - at least at the moment. Given my reactivity to Tetracycline, I could see perhaps using IV Tetracycline or Tigracycline, along with Tindamax, and or considering IV Levaquin (possibly). My goal presently is to move from a 35-40% plateau to at least 50-55%. We know I have no allergy to Levaquin or the Cycline family thus far, having used Doxycycline, Tetracycline and Minocycline orally. Yet, it is only Tetracycline, which seems to maintain the plateau. I can return to Dorxy to see if a positive result happens again however, given the drug seemed to fail after an intense activity induced relapse. I've never used Oral Tindimax. I have used oral Flagyl and oral Cipro a long time ago but the dosing was small and for unrelated issues. It was not combined correctly with any particular drug combination. IV Flagyl (If the IV were used), could potentially be valuable as well as an oral preparation before considering IV.
It is my opinion, having treated my Lyme disease for 8 years now, that the primary problem is still likely the co-infections. The drugs we used would have targeted Mycoplasma Pneumoniae, Rocky Mountain Spotted Fever, Chlamydia pneumoniae, Stachybotrys Chartarum, and the other infections found, but progress would not occur with Lyme disease, as we know if the major underlying co-infection isn't hit with the right combination. I believe we need to hit the co-infections harder, especially the Babesia. We know it's responding well to Malarone. Why Malarone? Moreover, why is the response to Mepron weak? Could it be the time frame? I used Mepron for 4 months at 2 tsp x 2. Perhaps the duration wasn't long enough - or perhaps it paved the way for Malarone? Alternatively, perhaps the proguanil is responsible. Given proguanil's propensity to expand Atovaquone's properties, what would the outcome be if we used Malarone ``with'' Mepron (assuming proguanil still isn't available as a preparation on its own?)
Expanding treatment to include (or rotate since some are in the same family) perhaps Artesunate, Pyrimethamine, Clindaymycin, Quinine, Lariam, Chloroquine, Chloroquine Ivermectin could be options. IV therapies for Babesia were also suggested. In the past, I did dismiss Tindimax in favor of GSE, and I entirely declined Lariam. Perhaps even including Sulfadiazine or another drug in that family is possible, as long as it doesn't create a reaction like Bactrim. I do believe an oral trial of Levaquin of a three-month time frame is warranted. I began this therapy independently. Results so far have been increased symptoms, minor response in improved sleep, though it is hard to differentiate whether lack of treatment for Lyme Disease is resulting in a backslide - the seasons interference (or perhaps both plus other factors). Additional therapies for Bartonella may be useful in my opinion, though I'm uncertain why a bigger response isn't present so far. Perhaps duration, or....the Lyme and Babesia are the primary contributors to symptoms instead. While I had a poor response to Rifampin with increased liver enzymes, there are multiple reports of ``single'' episode events that do not reoccur when the drug is reintroduced later. My increase was seen in one day, and this could have been due to combination therapy. When Rifampin was introduced again, I retested to see if the response was present. It did not produce increase liver enzymes. Possibilities? Unknown. Careful monitoring over a course of twice per week initially could result in opening a prior door that we thought should be closed.
Naltrexone is another potential door that could be opened in-spite of past reactions. Perhaps even a lower dose would be appropriate rather than starting immediately at 2mg. I've heard reports of patients responding to drugs they previously did not respond to because of including LDN. High dose Amoxicillin has worked for some patients who did not respond to Bicillin - a possibility. Returning to Biaxen in an appropriate combination, rather than just Biaxen/Plaquenil alone, may make a difference. Another potential contributor is Parasites. I've purchased 30 days of Humaworm, though I have not used it. Dr. Natura was recommended as well. Perhaps pyrroluria, High Homocysteine, biofilms, or hypercoagulation is contributing to my situation? A patient mentioned this, while others mentioned Bionic 880 therapy and the KPU protocol. Hyperbaric Oxygen was highly recommended. IVIG was suggested, though I'm uncertain this is optimal in my case and could induce severe side effects. Immune modulators besides LDN were also mentioned, such as cycloferon, polyoxidoniy ,licopid, though I know nothing about these. Another Transfer Factor treatment could be potentially useful - with the appropriate brand. Perhaps a cytokine profile is useful? I still have my EMEM3D2 Rife Machine that I am very seriously interested in pursuing, though I know the stance of your office on its sparse effectiveness. I will eventually pursue it regardless, as almost every patient I've spoken to who stuck with it beyond 6 months are seeing positive long term results if the therapy is done ``slowly and consistently.''
Additional ideas offered to me were muscle testing. I know nothing about this. Modulating the production of ATP via mitochondria function was mentioned to me. Apparently, a product called Paw Paw Cell Reg was used to do so. Someone mentioned IV Avolox, but I have no idea what this is. It was apparently a patient who had been seen in your office. Another person suggested IV Gentamicin, Roxithromycin. Then neurotransmitter testing was also suggested. Someone mentioned the possibility of a virus called XMRV, which I know nothing about; Additional herbs mentioned were andrographis, and resveratrol.
**edited to remove doctor's name**
[ 11-22-2009, 01:24 PM: Message edited by: METALLlC BLUE ]
Posted by unsure445 (Member # 15962) on :
This is a lot to comprehend! You are so thorough and seem to have a good handle on it all.
If you don't mind my asking, was it your doctors decision for you to stop almost all treatment in April or your own? Did your symptoms worsen quickly after discontinuing treatment?
Good luck at you appointment and hopefully you'll get on the right track. I would definitely bring this report with you but put it in their hands to figure out.
Also, what did you mean by "the seasons interference"?
Take Care!
Posted by seekhelp (Member # 15067) on :
MB, has a doctor(s) ever said you are too intelligent and articulate in writing to be so sick? I wonder if your thoroughness backfires? I think you do a great job with everything and am very impressed. I can see docs manipulating your abilities though. I hope you get some good direction moving forward.
I always struggle with how to present myself to docs. It can always go either way. Your research is so thorough it's like you're in the doc's seat at times!
Posted by sk8ter (Member # 8671) on :
Wow you are amazing to have even continued with all of this. Bless you. One thought though is have you been checked for genetic detox issues. People like me cannot detox these pathogen due to genetic detox issues. Dr. Klinghardt's site has a huge article on KPU therapy. Vitamin Diagnostics Methylation Pathways test can show which pathways are not working. There is a protocol that can open these up.
Also , as stated atthe latest ILADS conference Biofilms are not allowing all these ABXs to penetrate the pathogens. Are you on any systemic enzymes such as Lumbrokinase, Serrapeptase, Wobenzyme, Rechts-Regulat, Nattokinese to break up the biofilms? This is so important.
Also by looking at some of your allergic reactions to certain classes of meds it looks like you may have a genetic block in liver enzymes. Especially the sulfur drugs.The Vitamin Diagnostic test would show your doc this.
As to LDN. The latest research by the doc who founded this says now whatever dose helps each person is that person's dose. I can only tolerate 1-2mg and then I have horrible symptoms ( not a herx either). So I stay there and it helps everything. Ms patients are told to not go above 3 mg. I have mine compounded in a liquid with no perservatives by McGuff's pharmacy in Calif. I started at .5ml. It took along time for me to get to 2mg/ml. So that is a thought too. Hope this helps.
Posted by METALLlC BLUE (Member # 6628) on :
quote: This is a lot to comprehend! You are so thorough and seem to have a good handle on it all.
If you don't mind my asking, was it your doctors decision for you to stop almost all treatment in April or your own? Did your symptoms worsen quickly after discontinuing treatment?
Good luck at you appointment and hopefully you'll get on the right track. I would definitely bring this report with you but put it in their hands to figure out.
Also, what did you mean by "the seasons interference"?
Take Care!
It was my choice to terminate most of my treatment in September. I had treatment fatigue basically. I'd had enough and just needed to take a break. I did worsen gradually. The seasons have consistently worsened my condition, primarily Fall and Spring. At that time of the year I also get "worse."
quote: MB, has a doctor(s) ever said you are too intelligent and articulate in writing to be so sick? I wonder if your thoroughness backfires? I think you do a great job with everything and am very impressed. I can see docs manipulating your abilities though. I hope you get some good direction moving forward.
I always struggle with how to present myself to docs. It can always go either way. Your research is so thorough it's like you're in the doc's seat at times!
I do get strange looks from my Lyme Specialist(s) sometimes, as well as other doctors I've seen. They asked me "How can you complain about cognitive problems when you're able to present documentation like this? None of my patients do this."
My response is, if you had hours and hours to gradually put together something on paper, then you could do it too if your life was on the line.
I keep tedious notes (since I can't remember) and then take those notes and condense them for the appointment. I also tape record my doctors appointments.
For some reason my ability to "think about words" was not affected by my illness, yet everything else is impaired. My memory, my ability to visualize something in my head, my speech, my psychiatric behavior and feelings, vision, and hearing are all impaired in various ways. Ask me to do some simple Math, then you'll really see the problem.
I'm just incredibly diligent because everyone else failed (s) to be. I mean seriously, I've seen over 150 doctors since I was a child, and it took nearly 2 decades to diagnose me? It took being at death's door before I was fortunate to find a specialist who knew how to at least get me started on the path to recovery.
If a physician thinks I'm too intelligent to be sick, then they're obviously too stupid for me to employ.
Posted by METALLlC BLUE (Member # 6628) on :
quote: Wow you are amazing to have even continued with all of this. Bless you. One thought though is have you been checked for genetic detox issues. People like me cannot detox these pathogen due to genetic detox issues. Dr. Klinghardt's site has a huge article on KPU therapy. Vitamin Diagnostics Methylation Pathways test can show which pathways are not working. There is a protocol that can open these up. Also , as stated atthe latest ILADS conference Biofilms are not allowing all these ABXs to penetrate the pathogens. Are you on any systemic enzymes such as Lumbrokinase, Serrapeptase, Wobenzyme, Rechts-Regulat, Nattokinese ? to break up the biofilms? This is so important. Also by looking at some of your allergic reactions to certain classes of meds it looks like you may have a genetic block in liver enzymes. The Vitamin Diagnostic test would show your doc this. Hope this helps.
Thanks for the additional information. In my latest update to the doctor I mentioned KPU and other conditions associated. I also mentioned biofilms. I'll include the enzymes you've mentioned and the other suggestions. I've not been tested extensively for any of the things you brought up.
Posted by twinkle (Member # 16287) on :
MB, Just a quick question - were you taking B vitamin supplements when you got the rash from taking Bactrim?
You can get an awful rash (really a flush) from Niacin; it is very hot, so that your skin feels like it is burning and is sensitive to the touch. It can spread all over your body, and you can feel cold, but can't stand to have anything touch your skin.
It can last 20 minutes to all day. I took a double dose by mistake and it was not fun. Now I am sensitive to even the smallest dose, 25 mg, in a B complex vitamin, still getting a mild but unpleasant flush.
When it happened to me I had no clue, and finally found it after search the net for hours for "rash" instead of "flush." My dr. said good, you're herxing........
Posted by METALLlC BLUE (Member # 6628) on :
Twinkle, actually, now that I looked at my records, yeah I was taking a good amount of B-Vitamins. These are the records of the last time I took Bactrim. It documents the beginning through a few days after finishing the drug. Clearly progress was made. This is a concern as Bactrim would be very useful if I could use it.
Records Below:
[07-14-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. I woke up exhausted, felt like I needed at least 2 hours more of sleep. I felt better later in the day, from around noon onward. I went to my appt with Constance, and symptoms were around 40% functional. Muscle and joint pain are present, insomnia is serious still, though psychiatric symptoms seem to have decreased, including sound and light sensitivity.
[07-15-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling exhausted. Went back to sleep from 8 to 11 a.m. and felt better. I took an extra ativan to accomplish this. I felt around 40-45% during the day, about 40, and did some cleaning downstairs. My strength gradually decreased around supper time, and I became irritable and tired. My muscles in my joints and back are sore.
[07-16-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling better than the day prior, but was still pretty tired. Irrability was mild though present. Insomnia was present. I had a difficult time concentrating and maintaining composure, but succeeded in the end. I dealt with an extremely stressful even having to tell Mark that I knew about what he'd done to Erica, and about the consequence and feelings involved. It was so stressful that it was surreal. I felt like time stood still. I made it through and now my muscles hurt, my neck is tight, and I'm starting to get the evening "fatigue/symptoms" that occur. Today I was around 45% functional.
[07-17-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up really tired, slept until about 7 a.m. Fatigued in the morning, feeling exhausted. Mood was stable and uplifting, genuinely content. I worked out for 1 hr, which went well. I consumed a lot of fluids. My back, joints, and left foot are hurting a lot -- aches and pain. However this was after washing the car all day, cleaning my bike, and cleaning my porch. Hair was falling out less. Into the evening I became severely irritable. I still haven't had a Herxheimer reaction from the Bactrim.
[07-18-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up extremely exhausted. I could barely function. It took me an hour and a half to be able to wash some dishes. I think the exhaustion from working yesterday is the culprit. Moderate work today, would be best. Hair is falling out quite a bit. Decided to do some work, ended up working for 3 hours, and exercised for 45 mins. Too much, ended up feeling exhausted, though still functional. Into the evening, I stayed up past 9, and irritability, low frustration tolerance, sweaty hands, back, groin, and ongoing hair loss followed. Blurry vision out of left eye. Back pain and leg pain present. I took 2 625mg Aspirin earlier for the pain. They helped mildly. Hand tremors present. Aching joints in the hands. Light sensitivity increased.
[07-19-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. The 6th day of Bactrim. Tonight or tomorrow I should experience a sharp increase in symptoms. Disability will likely drop me to 25-30% function. I woke up exhausted again, felt like going back to sleep. Stayed awake so I wouldn't get worse. Felt run down, but took the dog outside. I managed to work out for 45 mins on the bike. Symptoms of hairloss continue, aching in the spine, and joints, especially feet and knees is present, including arthritis while riding the bike. Starting to feel spacey and irritable around 4:30 p.m. -- I did go to the movies, but felt tired. Function was at 35%. Extreme sickness followed into the evening around 8 p.m. Stiff joints, fingers and nerves inflammed. Bowel inflammation, mild nausea, runny nose, cough, and a moderate headache of about 5 on the 1-10 as well as "air hunger" -- a symptom in which the patient breaths, but is unable to adequately inhale the necessary breath completely. I am certain this is a Herxheimer reaction beginning.
[07-20-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Couldn't sleep last night, though dead tired. Stayed up until 2 a.m., and insomnia continued through the night while waking up countless times. Went back to sleep around 7 a.m. and slept until 10:30 a.m. Quality of sleep was 10%. Waking, cloudly thinking, with stiff joints, of the fingers, spine, hips, knees, feet. Shoulder muscles, back, spine are stiff. Mild nausea. Tremors are mild, if even present. bowel is bloated, upset, especially lower. light sensitivity is 5 on the 1-10. Cough, fluish symptoms, are mildly present. Extremely fatigue. Concentration limited. Memory difficulties.
[07-21-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Couldn't sleep last night, though dead tired again. Doubled Ativan in order to function for an appt today. Sick in the morning, but better than last night. Functioning around 35%. Stress during the day was enormous. I flared up around 4 and started have irritability. I had muscle pain, and malaise all morning, but it graduqally increased to a disabling level. Took 3 aspirin 625 mg each yesterday to sleep, but 2 tonight. Headache around 5.5. Rib pain, chills, fever, bloating, stiff joints, light and sound sensitivity. Neck pain serious, walking and gait have become distorted, a limp while walking is present. Skin pain, and hair sensitivity is present. Overall function has dropped to 25% functional.
[07-22-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up exhausted. Sleep quality was absolutely horrible. I had chills, and night sweats. I had to change my clothing a number of times, and switch pillows. Joint pain, and muscle pain are present. My skin feels like I have a sun burn all over -- everything hurts to touch or be touched. Light sensitivity, sound, all difficult. I woke with a mild headache, and I've been sweating. I took 1 aspirin this morning 625 mg. Function today is around 30%. Is it possible Bactrim is antimalarial as some say, and that I have Babesia? This is unknown. It could be a problem defining a co-infection.
[07-23-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling really tired. My skin feels like I have a sun burn, and I'm sweating. I had night sweats all night. I also had chills. I have a minor headache. Sleep was absolutely horrible. I woke up countless times miserable. At 2 in the afternoon I was able to both work out on the bike for 30 mins, and then take laundry downstairs. I felt "malaise" but not debilitated. I was able to go downstairs and do and hour and a half of work, including repairing a shelf, washing a refrigerated, and cleaning some dishes. My back aches, but isn't serious. 3 on the 1-10. Fatigue is 5 on the 1-10. Irritability is increasing. As the evening went forward, I had increasing redness of the skin and a burning sensation. While other symptoms decreased, this one began increasing. A sign of a potenti side effect or allergy was developing. Dicontinuation of treatment is necessary. Monitoring will continue.
[07-24-08] Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling a little better. I took an extra 1 mg of Ativan at 4 a.m. to help me get through. It's now 6 a.m. and I can function at about 40%. My back still burns, but it's not as serious. I changed my clothing a few times last night, due to excessive sweating. Symptoms have decreased. I feel cold, an my back aches, but it's far less than the last few days. Pain in extremties mild, and improving. Complains have decreased with just about every symptom. Fatigue, soreness, aches, and general malaise is ongoing. Function of around 40-45%. Cognitive function impaired this morning. I felt as though I were in a fog at 10 a.m. and though I were going to fall asleep driving. I felt hot out in the sun. Some skin rash has appeared. Could be Bartonella. May be Bactrim. Unknown.
07-25-08] Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling tired, but it soon went away. Many symptoms improved, allowing me to function at 45%. The skin sensitivity and redness began disappearing. I worked out on the bike for 1 hour and then worked downstairs cleaning for 3 1/2 hours. I was tired, and fatigued. My joints were popping and I felt aches and pains as the day wore on. Into the evening I began to feel irritable, but overall progress was made. Posted by METALLlC BLUE (Member # 6628) on :
So Twinkle, what do you think? Could this be the same thing you're talking about?
Posted by JR (Member # 16898) on :
I haven't seen the IDSA speak out about Rife Machines, and Bionic 800,and the salt/c or marshal protocol. They just said long term antibiotics is not effective.
You say almost nothing has helped-well you have plenty more options. Read Dr. S's The Lyme Disease Solution and go on the inflammation diet.
Posted by METALLlC BLUE (Member # 6628) on :
So I finally saw the PA (Who I like, and who knows my case best) yesterday [11-19-09]. I'll give you a full run down of everything we talked about, but then ultimately tell you the final drugs we settled on. They will be listed in "Bold.".
I told the PA that the only positive results I've seen since last seeing her was while using Malarone. I explained that the Malarone at twice per day 250/100 was solid.
I presented my documentation, which she was thrilled with. I expressed that the others (especially the head LLMD) looked at me funny when handing these updates to him. The PA said "Uh, well I love it, everything is here, the appt goes faster, and we're both clear where you've been and what the next steps are."
The PA then told me about a patient (Random tangent), who went to Colorado -- (She was sick sick sick like you and not making progress). She went to CO, spent 3K, and had all kinds of herbs, colonics, body work, fasting, cleansing, and it lasted 8 days. She came back, and she said she felt great, that all her symptoms were gone." -- I don't know...but I'm just mentioning it.
I told her I'd heard of people mentioning it, and expressed a run down of things I'd tried that may be related.
I told her that while she was gone I had to see other people in the office -- which I'd said I absolutely wanted to avoid as much as possible, and that she was the only one I wanted to work with from the start." I told her things didn't go well, that personality conflicts abound and that generally my opinions were dismissed or avoided. Of course being the way I am, I'll force them down your throat if I'm paying you hundreds of dollars per hour to work "for me" to help me. The reality is, the patient is the one who gives the doctor the diagnosis, the patient is the center piece of observation both physically, and cognitively/emotionally." She felt bad and said, I understand -- well, what you do works extremely well for me, so I don't understand, but whatever."
I agreed and we moved onto further discussion. I showed her what meds I was presently on. VSL#3, Theralac, Saccromycin, Malarone, Buproprion, Magnesium, Ativan, Pentasa, Lamictal, Levaquin.
She asked me if I'd done Levaquin previously through their practice, and I said no -- we did Factive, and it was worthless for me.
I then presented a list of everything we'd tried in a color coded sheet. The medications I had great responses to were Malarone, 5 months, no Relapse.
She then asked further questions about the Levaquin. I told her I'd used it previously, during a period which I was given it via IV and orally for a few weeks for a septic reaction to an IV line. I was given IV Vancomycin, Oral Pen VK, -- then stopped both as a result of an allergic reaction. I developed sepsis following the discontinuation of these drugs and was hospitalized. A month later after having left the hospital and having done both the Levaquin and Bactrim at home orally, I suddenly improved dramatically. Since that time, I've been trying to use one drug at a time to see which was responsible for the progress. I'd done Bicillin, nothing. Vanco I'm allergic to and thus can't redo, Bactrim was revisited, but a strange response developed, which seemed like a sun-burn or a potential reaction to the drug. I discontinued it, but I did see improvement.
The Levaquin was the final drug to revisit. I've been using it for a month and any changes I've seen have been subtle and could be easily explained by other modes. In other words, I told her I wasn't certain of the drugs impact so far.
She then covered the Rifampin and said "What happened with this?" I told her about my liver enzyme count, that I'd only used 1 dose, had crippling insomnia, anxiety and the liver issue. However, I've also heard of patients having strong reactions initially, especially if the drug was combined with many other medications at once -- which is what happened, and so, it could have been a reaction unrelated directly to Rifampin alone.
She agreed, and felt that we could carefully monitor the liver within one week. This way we could easily avoid conflicts and see whether this potential candidate could rise again.
So she said "Rifampin and Levaquin would work well together, if you can tolerate it, so I could add it to what you're already doing -- which is another 2 months of Levaquin."
She then began reading my diary of what happened during the week I used Bactrim. We came to conclusion that this drug also may be revisited, simply because the symptoms could have easily been related to sun-burn, since that type of reaction is not seen generally with Bactrim, unless you've been exposed to the sun. At any rate, she said she was open to another test trial which would also be carefully monitored when we chose to revisit.
We then changed subjects and moved onto the discussion of Babesia again (We'd just been talking about Bartonella when discussing Rifampin, Levaquin and Bactrim)
She then mentioned the drug Remet, and said it's another option. She said we don't prefer to go up on the Malarone to three per day since we don't see results -- we used to do it in the past. She said "Here is an option, if we used the Remet, you would have to stop the Malarone and Levaquin." I told her that probably wasn't the best direction to take given we already have a foundation of progress (without relapse) on Malarone. -- and the Levaquin should be given a little more time. Although no major results are seen, a combination may alter the progress of the Levaquin.
She then proposed another option: I could always add Rifampin to Levaquin, or I could add Bactrim to Levaquin.
We then considered the issue of the Liver, regardless. She said we could use Milk Thistle, ALA, NAC, Hepa 2 (Dr. Zhang.
She stated that using one drug alone -- such as what I'm doing, would probably not be in my best interest given I've done so much -- so many mono therapies. Dual combinations and more are probably the best course at this point, but we've got to make sure to prevent damage. And thus the Rifampin and Levaquin with Liver support would be most useful.
So we'd keep the Malarone, Rifampin and Levaquin, and then add from there -- potentially Bactrim, depending on what takes place. I asked if Bactrim with Levaquin was ok, and she said -- hesitantly -- yes, but I usually see better progress with the combination of Rifampin and Levaquin.
She said the usual course with the Bactrim would be using a Macrolide, like Zithromax or Biaxen. I told her I could not get my hands on Zithromax through the insurance. She then considered Biaxen again, and I said I'd check into it.
She said "I could" do the Bactrim, Levaquin or others -- just because it's our standard doesn't mean I can't -- it's just... we'd need to tread carefully. I want to help you function better, not be slammed so hard by adding the Septra too (Bactrim).
I told her I was strong enough to take a harsh hit compared to most patients -- my body is much stronger but the symptoms are still pronounced like the fatigue, no so much pain or enormous amounts of inflammation.
She pushed the Rifampin and said "Well, if I were you I'd do the Rifampin because you really didn't even ever use it -- one day just doesn't count." I agreed.
My mother then said "Make sure you tell her about the weight loss." I then told her I'd lost 13 pounds since last seeing them in September. She thought it was significant, but I said I'd been losing weight before that too I believe. She said that Levaquin can cause weight loss, but that as long as I'm eating reasonably, I'd be ok. I told her I was eating fine, it was just that I didn't have the overwhelming compulsion to eat more than necessary like I was before.
She then mentioned thyroid. My last test showed slightly low T3, but I told her I'd started the Armour Thyroid 1 1/2 months ago, and that not once have I seen progress while using it. I'd used it for many months prior -- like 5-6, and nothing. I then read down the list of things I used to "support" the body -- and told her, I really don't think we're looking at a toxic body issue, or even a major hormonal issue in the Thyroid as much as this persistent low load infection(s) that just won't take a seat. She said "Yeah, maybe, I mean we've hammered you." I said yeah, I did this, this, this, this, this -- it's just not sensible to pump all this money into these other areas when I'd done them for more than enough time. She said maybe.
I've done so much detox, 3 months of the Cowden, Alive, Vitamin D, Thyroid, NSI ALA/NAC, Dimension 3, B12 Shots, ---.........
I said there was only one thing that made a change in my numbers probably, but which didn't improve how I felt. The Seriphos made an enormous change in my cortisol levels. MY numbers in the morning were actually low, while my 10 a.m. and 2 p.m. numbers were slightly too high. She said we'd balance these slight deviations out by using the seriphos 1 cap at 10 and 1 at 2.
I also did, Valtrex 4 months, nothing. I also did VFEND (trying to see if it had a better response to Diflucan -- like the study that was done). Results, nothing. Nystatin, nothing (thought it's mostly there to just protect), Diflucan, nothing, Plaquenil, nothing, Mino nothing, Biaxen, Nothing, Amantadine, nothing, Azithromycin, nothing. All of these were done for extremely long periods of time, except Diflucan.
We then covered Tindamax. It was clear that we want to add this at some point. She then said "We can do an odd regimen, maybe next month. Levaquin and Rifampin for the Bartonella now, then next month Zithro, Tinda, Septra. I told her I couldn't use the Zithro since Insurance won't cover it, so she asked if Biaxen would be covered? I said "Maybe." She continued: Just 4 days a week. Either do Septra/Biaxen, 4 days on, 3 days off, and Tindamax 3 days on 4 days off, or 2 weeks Tindamax on, 2 weeks off, but it's kinda harsh, it's really rough. She said it's tough on the liver and in terms of Herxheimer reactions probably for someone like me -- she feels (and I agree) that cystic infection is prevalent in my case, only because the logic is so obvious. I've done antibiotics straight for nearly 8 years, and if illness is still present -- which it is since the Lyme Disease Western Blot through Igenex was positive across the board.
She then said -- I think it's best to do the Septra, Tinda, Biaxen. If the current regimen for this month (Lev/Rif/Mal/Lariam), then we'd stay with that, otherwise we'd go onward to the next regimen.
I then asked her about "How" Tindamax has an effect on the cystic form of Lyme Disease. The chemistry of Tindamax, and it's relationship to Lyme Disease, clearly shows it does not work for Lyme Disease as it's spiral form. She said, we don't know entirely, we only know the studies that have shown that family of drugs breaks up the cyst. We think it's possible that the drug has antiparasitic properties, which could be responsible.
She then switched topics and said: I think that in your case, you know you've got this chronic state, where you're not dying, but you're not living -- and it's likely the Bartonella advances slightly, then the Lyme - and it's probably a low load. This has been going on for such a long time that you know the antibiotics aren't the answer to your complete wellness, but right now we want to just move you up a notch, so you can then move further trying other methods.
She then asked me about LDN. I explained that I had a lot of side effects. I told her it seems that when I have side effects it's often when the drug is taken near bedtime, which is the time of day my symptoms are most active. She said "LDN really could be of value, it would really calm your cytokine activity. She asked me what I'd tried before, and I said 2mg. She said "I would consider starting again but using only 1mg." She then said "And the Pekana Drainage, what happened with that? I told her I did it for 30 days but then the main LLMD told me to stop. She said, that's strange, because that's really more of a long term thing. We'd use it to decrease the flares, usually.
I then told her that I'd never seen results on any supportive therapies except Transfer Factor Plus by 4 life (Which worked for one week while taking 9 caps per day), but then it stopped working after that. She then told me "Oh, that's the kind we have." She said "You could try searching around for a different company, it may be useful, but I don't know." I've done a very large amount of immune stimulation, so further work in that area seems worthless -- if my immune system isn't strong now, then it's not for lack of trying but because we have to focus on these infections.
She then asked me about Hyperbaric. She really would like me to do it, but cost and location make it prohibitive. The fact that 60 sessions would be needed, plus going 2-4 days per week (o even everyday if possible) just isn't going to happen. I told her I was disappointed. I would look in my area locally to see what options were available, but if it's not covered by insurance there is no way my meager SSI check can pay for it. She then said "Yeah, even if travel was resolved (such as having you stay with someone), those other factors are limiting.
We then discussed sleep. I told her I felt the Levaquin was interfering somewhat with sleep. I told her the Ativan just isn't strong enough to push through it. She recommended trying something new. She asked me a long list of drugs and I told her I'd already tried all of them, but the one I had not was Seraquel. She said "Divide it into two or even 4 doses of a 25 mg pill. See what feels right, but don't expect to function for at least 8 hrs. You'll be out like a light. I told her I just don't want to wake up feeling sicker or even more sluggish. She understood.
I told her the bowel issues had resolved from the VSL and Theralac/Sac. I asked if I could lower anything. She said, I would still continue at least three, Theralac, VSL, Sac, or remove the VSL and use Ultra Flora, but stay with more during this process. I said I may as well stick with the capsules then, because I can use one VSL cap and it's 112 Billion. She then said "Jeez, yeah that's way more than the Ultra Flora or others, yeah, stick with that if you can -- I love the product and use 1/2 packet for myself. She then asked if Insurance covers it (Hers does cover the double strength). Sadly mine won't cover it.
I told her I also saw some results from 60 days of Zhang Artemesiae, but it wasn't significant and relapse did take place.
She then said "Well, hold on a minute I just want to check with the big guy about doing the 3 Malarone. I don't want to lose this idea. She then came back and explained that if I'm having such a good response, we will increase the Malarone to 3 per day.
Then we turned to my actual written update.
She then said "Ok, so you wrote here that you were burned out, and the doc wrote in your notes that they were thinking about using the IV. I also see your concern about turning to the IV and relapsing -- because it's true, it's very likely that will happen to you." I agreed and said, it's just not sensible yet to go that route -- having to install the port, manage everything, etc. It should be a last resort I think. She agreed and said we'll wait.
She then noted that I wrote "Tigacycline". She said, oh yes this would be good, but we can't prescribe it yet. Only Infectious Disease doctors are being permitted at this time. I then pointed out the IV Tetracycline. She said yeah, but we've "never never" use that, and even still if we did it, it's just no different than anything else we'd do via IV here -- Doxycycline etc. It'll just end in Relapse probably, you know? I said "Yeah, I think so too, but it's that temporary progress I'd considered."
She then looked at the IV Flaygl idea and said "Hmmmm, Hmmmm." She wasn't really convinced it appeared that it would be write for me. I told her I'd just thrown it in -- that I didn't know anything about it.
She said "You'd done all the supportive stuff, you've done so many drugs -- we're missing something, I just can't quite tell. I mean, I really don't think your load of infection is high, it's like, I know the antibiotics aren't probably the answer -- but I do think we can get you higher up the ladder, but...what else is it?
I said, perhaps we are just facing excessive resistance, or maybe another infection or circumstance is present. I highly doubt it's autoimmune but I do think the immune response is being triggered by something -- could it simply be a low load of what we already know, or something undiagnosed?
She then continued "You know, maybe something in Eastern Medicine holds the key, but it's just....something we don't know here. Wouldn't it be great if some plant in the rain forest holds the key to something like this? You would just rub it all over, bath in it and bang, be cured Wouldn't that be amazing?" I then said "Well, a lot of the medications we've advanced started there, and still evolve from there -- it's possible, but it's certainly not a full understanding of what's happening here. It was an amusing break in the conversation, because really we know we're dealing with excessive complexity here in my case. Yet, what if it's something very simple we're overlooking?
She was reading the report so much faster than I could read. I stopped her, and said I thought the Mepron could have been used for two short of a duration -- though it didn't seem likely given the fast response to Malarone. But why? Why Malarone? She then said "Progunanil" -- perhaps the strain of babesia you have just isn't responding at all to Mepron or these other antimalarials but that particular drug is.
I then asked her about using Malarone and Mepron (just for kicks). She said "The only time we've ever gone extremely high on either -- or added both together was for extremely heavy people."
She then covered the ideas I listed for Babesia, including Quinine, Clindamycin, Lariam, Chlorquine, etc. She then asked me if I'd ever done Lariam, but I told her I'd dismissed it in the past because of the side effects. I would consider it though. She said "I'm going to write a prescription for that, adding it to Rifampin, Levaquin, Malarone. I'd give you at least 6 weeks to get on them, then add the Lariam. Check the liver each week while adding each week.
I pointed out the other Babesia drugs aside from Lariam. I mentioned other physicians had success with that Clinda/Quinine. She said Clinda/Biaxen, with Mepron. The Ivermectin you mentioned here is just the IV of the other drug here. I'll write some of this down, just for consideration of a future plan.
I then went off on a tangent. The last time I was here for a visit (not with you), you know what they told me? They told me that about 5-10% of our patients don't recover because of psychiatric/emotional blocks. It's very unfortunate that you're not responding to treatments.
I then said "I looked at J and the doctor as though they had three heads. Obviously that isn't what's going on in my case. My mother spoke up (as did my father) saying, yeah he's really grounded, the kid is most certainly not nuts. He's had therapy for over 20 years, if he's not "unblocked" by now, it's a little absurd. The PA agreed and said "Yeah, I'm pretty sure by our discussions that it's obvious you're biologically ill from infection, not "blocked" in any way that would keep you ill, especially given your response to various treatments like Malarone and Tetra. We've seen this happen before. I don't know why they said that, I can't get into their heads, but I do know we do see cases in which the patient is not compliant, or sabotages treatment and things of that sort that do impair recovery, but they're extremely ill, and it's true they sometimes come to treatment with not only the infections and the mental illnesses caused by the disease, but also with severe psychological problems from family history, drug addiction or other unrelated issues that were present before illness.
I laughed and said "Yeah, hook me up with that crack." Everyone laughed, and we all knew it was absurd.
She then laughed and said to my mother and father "You really need to stop beating your son, in a joking tone." It was hilarious, seriously.
Me, I'm normal -- well, in respect to the average behavior and thought processes of most human beings, you know? I'm not thinking or feeling unconscious destructive tendencies -- in-fact I've got a great girl (who you know and treat here), a great family -- who clearly support me (They're sitting right here now), and a place to live, good care, and I'm complacent in some way, considering it could be so much worse, you know?
She then said "Yeah but it could be so much better. And I said "Yeah, exactly, that's why I'm here, you know? It's just a long process,\. What can I do -- keep expending enormous amounts of energy railing against reality? It seems those who rail hard and are desperately trying to be heard -- which is absolutely reasonable -- are called nuts. Now they're implying that someone as sane, calm and focused as me isn't recovering because I'm a head case. Alright chief, ...... uh uh. So yeah, I looked at them like they were the ones who weren't looking at the reality of events.
No, the reality is I have a disturbing chronic infection which is poorly understood and I'm probably one of the most compliant and proactive people you see. The problem isn't me, and I'm not even saying it's them -- it's that we're missing something, period. They said "Well if you're not going to do the IV, we'll need to refer you to someone else." I said "Are you serious?" Let's figure it out instead of assuming.
She agreed. She said "Jeez you're passionate, it's true though."
I know you're the only one who was going to say "Yeah Mike, there are options."
She then started reading my list again and said "IVIG?" Who recommended this? I just said "Meh, it was thrown out there during discussions but it wasn't really a recommendation. I just added it because it was a related concept in the larger picture."
She then read further "Humaworm?" Mmmm, good, yeah we've not covered parasites of this sort at length yet, and I like this stuff. It's great. I've seen results in patients and I'd like you to hold off on it, but keep it ready on the backburner. Perhaps after the three regimens, or even this next one -- we'll see.
She then read that I'd listed Rife therapy. "I see it says you have an EMEM23D. You know, ok, yeah if you wanted -- it's your deal, you could do a month of what I prescribe, and a month on of the Rife, and then switch back and forth. It's only once every two weeks, right?" I said "Yeah, ok, I mean let's get real, although your office doesn't make any official statements (or obvious reasons), you've all generally looked down on patients who do go off on this direction. You've said that clinically you've seen patients not respond and rather they only flare-up from it."
Now what I've heard is entirely different. The response really have more to do with appropriate management and consistency. If someone is extremely ill, and jumps on Rife, yeah -- it could be a nightmare from die off, or....whatever other effect the machine has on the body. But everyone I know who has done it right and done it long term (even without antibiotics), shows good progress. They gain 5,10- or even more percent. It's no miracle, that's been made clear by all of the people who are seeing progress on it, but it's also no hocus pocus bull**** that fits only the criteria of your observations. It's worth a shot if you consider the risk to reward. We're dumping **** into my body here. Do you really think cancer or whatever other risks are somehow so much more apparent and threatening? No....
She agreed and said, do what you think is best in that respect. It's an option, no doubt. Pulsing it in etc.
We then discussed Muscle Testing. She said "mmmmm, I don't know. I mean it's very subjective. I know patients who did extremely well with it. I have one guy who calls me by phone for consults and I read off the options to him based, and he'll just say "Yup, nope, yup, nope, nope -- my body can't use that. The kid made enormous progress. Who knows? I just give him the options and I told him to pick and choose whichever he wishes to use.
She continued down the list and noted: Roxymycin. That's Europe, right? Yeah, you could use this if you could get your hands on it. This would be ok instead of Biaxen as an option too.
We then discussed the new study released last month on "Xenotropic murine leukemia virus-related virus (XMRV)". I told her it is a gammaretrovirus that was first described in 2006, It is only one of three now that we've discovered in this class for infections in humans.
She said she hadn't heard about the study on CFS and this, and so I told her the basics: The study released of about 104 patients, demonstrated that 67% of those with CFS, were positive for the infection, while only 4% of controls were positive. This is only a correlation. Obviously we do not know the cause and effect, but who would wait if they were suffering? She said "So like, we're talking about a virus very similar to HIV then, or..."
I said "Yeah, yes, in-fact the hypothesis currently under investigation is whether an HIV regimen would apply to this particular virus. I then mentioned a doctor down in Houston who was involved presently with finding a routine that may work. I also told her that testing would be available in 3 months (based on the Houston Drs report).
After we finished this discussion she began listing off what she thought this present routine should be. She said:
Lariam: 1 250mg every 5 days.
Malarone: 1 x 3 per day 250mg/100 per day
Rifampin 300mg x 2 per day
Levaquin 1 500mg x 1
Low Dose Naltrexone: 1mg per day
ALA 600mg per day
NAC 600mg x 2
Milk Thistle 1 x 3
Hepa#2 1 x 2
Theralac: 1 per day
Saccromycin: 1 x 2
Seraquel: 25 mg x 1 (break it up)
Seriphos 1 at 10 a.m. and 1 at 2 p.m.
We then continued discussion of the list. I labeled all the infections and abnormal factors that we've diagnosed since I began in the office.
Positive testing for:
CPN MYCON StacB Mold HyperCortisol RMSF Chronic Lyme Bartonella, Babesia Heavy Metals Vit D def Abnormal Bowel flora.
We can presume very reasonable that we've wiped CPN, RMSF, and MYCON off the map. The amount of treatment would have been devastating over a course of 8 years. Mold would highly highly unlikely survive VFEND and Diflucan, even in separate minimal 2 week cycles. My numbers went down significantly just with Diflucan. Aside from that, we already solved the mold issues in the house. I can test again however, but the AC's were washed and bleached carefully, the ceiling was entirely void of mold and repainted with anti-mold properties. We've addressed the Adrenal issue at length, and it's significantly closer to normal now -- we've got that under control and the labs prove that. The Chronic Lyme is clearly still a threat, the test was positive in-spite of ongoing antibiotics at the 7 year mark. Bowel flora is now normalized -- at least symptoms appear to clinically demonstrate that. Vitamin D supplementation was done heavily for a year, both prescription dose and then V3. I would think we've hit that issue pretty well. So that leaves Bartonella, Babesia and Lyme. We know the Babesia is responding to Malarone (Or at least something of that sort). We know I respond heavily to Bactrim, which we can presume is another infection -- probably this Bartonella you've diagnosed. Heavy Metals were done for nearly 8 months. That's plenty of time based on my numbers, but we ought to retest this and the mold.
The PA agreed with every single thing, and said retesting was needed for the metal and mold. She said it was nearly impossible (in her opinion) that any of the other infections aside from Bab, Bart and L would survive the long term therapies of the sort I've had.
Our assumptions could be wrong, but they are as reasonable as could be expected at this point.
I want you to use Reloraplex for the adrenals after you've finished the Seriphos. We can work that out at the next appointment in two months.
Recheck the mold in the house if you can, bedroom and living room -- that's where you spend all your time, right? I said yes.
The last thing we covered was the symptom pattern.
She saw that the sleep was the severest, as well as neurological symptoms. I mentioned I did have mild tenderness in the tendons while using the Levaquin (Levaquin also happens to cause insomnia, and this is how we moved onto this issue). She told me "Absolutely be careful for anymore symptoms in those tendons, we don't need a rupture, right?"
Ok, absolutely check Liver every week, and the CBC at least every two weeks.
[ 11-21-2009, 10:06 AM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
That's the long version. Sorry it's so long, but I basically transcribed the tape recording, so you're actually getting "the entire" appointment.
The short version of what we're trying is "listed" and in bold near the bottom of the last post.
Posted by Stacyb (Member # 13084) on :
Just wondering if you had ask the PA about Hyper-coagulation or Biofilms?
I saw you had such a detailed list that you may want to ask about those issues too?
Posted by Stacyb (Member # 13084) on :
Sounds like you have a great plan and that you really have not hit Bartonella for any length of time. That maybe the missing piece?
Posted by seekhelp (Member # 15067) on :
Thanks for the update MB. I hope the next course puts you in the right place. that protocol would KILL me. You must be made of titanium (same strength as WildCondor). Posted by METALLlC BLUE (Member # 6628) on :
I forgot those topics Stacy. I will cover it again. Yeah, the update was probably overkill, but the only part you all "really" need is the listed medications.
Posted by Stacyb (Member # 13084) on :
I am glad that you have a new sense of direction and some options for a plan. I personally like all the details you relayed. Definitely a strong protocol but I have done many like that too. Hope this time you get better results!
Posted by sixgoofykids (Member # 11141) on :
Sounds good, Metallic!
I used Humaworm (I was actually on Levaquin and other stuff at the time but figured it was better to try it and ask forgiveness than wait for permission). Dr. had never heard of it and wrote it down and the website to check out later, put the note in his wallet.
Parasites were a HUGE part of treatment for me. I can't even stress how much it helped. I hope you do push them to let you address parasites!
Good luck with your new protocol.
Posted by seekhelp (Member # 15067) on :
I am SO glad this stuff is here to get a real-life assessment of what this office does. I have a keen interest in it. BUT, how does this not violate a LYmenet rule of discussing specific protocols from docs? We all know who MB sees.
I'm all for abolishing the rule and getting real data like this, but I don't run the board. I'm always amazed at how thorough the office is and how much more they consider that other LLMDs. They seem to be willing to try ANYTHING. That's very encouraging.
Posted by Rumigirl (Member # 15091) on :
Wowee, I really hope that the regimen you worked out with the PA will see major improvement over time. I am one of those people, also, who has tons of the various infections---over all or most of my life with uncountable tick exposures---including yet another one this year.
IF you don't see the progress you would like from this tack, I would really consider Tigecycline. Dr. B is talking about it and recommending it a lot. It has helped quite a few people a lot. And it does get the co-infections, except, Babesia. It's damnably expensive if your insurance doesn't cover it (mine won't cover any IV now), and it's only IV, but consider it down the line, if need be.
Also, rife, etc. is another way to go. But for right now you have more than enough to keep you busy!
At first this thread, and so many like it, is so discouraging, because I am afraid that it will continue to be my story, too, but I did have improvement before my tx came to a screeching halt, due to multiple problems. Hopefully, I will crawl my way back and then up from there.
It's awfully hard for those of us who have sooo much to work with. Here's to a new plan and improvement coming. Bart and Babs are such formidable entities, as is Lyme!
Posted by METALLlC BLUE (Member # 6628) on :
quote: I am SO glad this stuff is here to get a real-life assessment of what this office does. I have a keen interest in it. BUT, how does this not violate a LYmenet rule of discussing specific protocols from docs? We all know who MB sees.
I'm all for abolishing the rule and getting real data like this, but I don't run the board. I'm always amazed at how thorough the office is and how much more they consider that other LLMDs. They seem to be willing to try ANYTHING. That's very encouraging.
Well, I signed documentation allowing them to do this. I'm well aware that we're performing some experimental work based on hypothesis as well as using clinical experience, observation and objective indications.
Not only that, but she knows that I discuss my visits openly with the Lyme Community. I told her that. She knows the work I do with the list, that I collect patients personal experiences, and her opinion was "That's great, patients should know what they're getting into." She said that's perfectly fine. Not only that, she allows me to tape record the appointments. I think knowing this, it's quite ok to post my experience. Also, I removed all initials from my posts. They all say either "PA, or my LLMD." It was an additional measure. Others are encouraged (Or possibly 6 could edit them) to change the initials and location. I think the posting is worth the effort to make such change if some feel overly concerned.
Another important thing to remember is that the office I see has already experienced legal issues previously, and now laws are in place that protect them when treating patients like myself. They can not be reported to a state medical board by any individual private insurance company. The only insurance they take is not private sector and has approved their methodology.
With all this said, I think it's crucial to permit me to demonstrate what a productive appointment with an LLMD "should" look like. If you're not receiving adequate time, logical treatment considerations, compassionate care, and instructive teaching (both to and from the care provider), then you're not asking enough from the doctor and you must speak up. Was what I did in my appointment overkill and unreasonable? Absolutely not.
An appointment should -- in my opinion -- be a brain storming session, not a dictation without thorough exploration and explanation.
Hopefully my post provides ample reason to justify what I've given for information.
Now remember, I did not receive this same care from others in the office. I've been vocal in the past to those who asked me privately how I felt about some of the negative things I experienced. I've also met people who did not prefer to work with the person I worked with during this appointment that you've just read about (The PA). They're reasoning was that they can't think clearly enough to discuss much, and rather they simply need dictation. Or, they feel the appointment is too "scattered" -- which is absolutely the hallmark of brain storming, and so that may not work for them. Others have said they felt that the style of my appointment (when they experienced it) was too pushy, to.... much, too soon. In other words, aggressive. And rightly so, she is far more aggressive and desires to move you as fast as you can into a treatment protocol. Notice that I made it clear I was not going to race to the finish. I'm calm, and going to go at "my" own pace, not hers or anyone elses. My concern isn't so much high liver counts or excessive herxheimer reactions, but rather sharp side effects. So what did she do when I put my foot down? She said "Good, that's perfectly fine, in-fact you can cut pills into pieces and increase like that too."
I think patients should see this. One last comment that should amaze everyone. The appointment only lasted about an hour. So go overly prepared. Feel free to ask me for the template I used. I really love sharing these things if it will help you formulate your own concise report for your doctor.
A complete report should include:
All diagnosis,
All medications we've used thus far,
The results of each medication,
Condensed symptoms listed, with indicators of how severe or minor the symptom is (1-10 scale works for each symptom),
All testing done thus far (with any unusual results specifically listed),
All presently used medications, including the date they were started, and whether the dose changed at any points.
When a case gets too complex, the doctor can't keep going back to your records -- your records are hundreds of pages sometimes, but with a condensed report, I gave 5 pages using only three pieces of paper, and provided them with almost a years worth of data. It took her under 3 minutes to read all the data. Now compare that to how long it takes you the average patient to provide a year of data? When I first saw the PA for the first time about a year ago, I had to give her my "entire" history dating back to when I was a child (I'm now 31]. The report Included 20 + years of material. Even after a full review of all records, the report was 17 pages long, but it was easy to find any particular piece of data when asked (Under 10 seconds)."
Organization makes appointments shorter and should make an LLMD much happier. If they aren't happy, then they aren't the right LLMD for me.
Ask for the template via PM.
Posted by keltyl (Member # 14050) on :
Sounds like an almost duplicate appoint I had recently!!!
Posted by METALLlC BLUE (Member # 6628) on :
Really Kel, so the appointment went well? What happened?
Posted by JR (Member # 16898) on :
Lou B Administrator Member # 64
posted 08 May, 2009 01:59 PM -------------------------------------------------------------------------------- LymeNet Users,
The LymeNet Terms & Conditions contain the following: "You agree not to post the last name, or the first name, of any person that treats Lyme disease. Instead, please use the first initial of the last name only, with the state, but not city. For example, Dr. G. in WV. This person's contact information should not be displayed on LymeNet. However, you may PM or email this information. This is to protect those that treat Lyme and the Lyme community."
I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit.
Current HIPPA laws prohibit the doctor from discussing your care with anyone but you without your written permission. I suggest you respect the doctor - patient relationship by discussing any issues or concerns directly with the doctor and not posting them on an Internet BB
How can this thread go on and on? Lou B entrusted this board to Jenifer and the new mods- What part of: I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit. does MB and the moderators not understand?
Posted by nefferdun (Member # 20157) on :
What I read in your diagnosis is that it was determined by clinical diagnosis you do not have bartonella. . . is this correct?
You have many symptoms of bartonella so I don't know how anyone could miss it. Some of you symptoms include forgetting nouns, sore throat, insomnia, rage, depression, muscle twitching, headache, eye problems, feet hurt and irritable bladder. . .
You said you greatly improved on levaquin but then relapsed - typical of bart. You said you got bad insomnia from rifampin, which is a typical herx in the treatment of bartonella which refampin is for. And you herxed on only 3 HH capsules a day? That is very much bart.
Just my opinion, but I think you need to address bartonella with another doctor.
Look at your skin for these indications of bartonella (you can also buy Schaller's book to see what I am talking about). peas size brown spots, loss of pigmentation, pin head size blood blisters, swelling around feet, ankles, hands etc that does not dent, stretch marks that are red or purple, spider veins, broken blood veins, marking resembling stacked clams, marble like nodules under the skin that hurt when pressed, lumps along the shin bone, unusual skin tags, moles etc. . . .
Do you have a loss of motivation and a general feeling of apathy as though not connected to yourself and life? I can't imagine growing up with lyme and bart! Of course you would be diagnosed with ADD! I hope you can find a solution. Don't give up.
Posted by nefferdun (Member # 20157) on :
PS. See you are seeing someone that recognizes the bartonella and wants to address it now. Yeah!
Posted by METALLlC BLUE (Member # 6628) on :
quote: I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit. does MB and the moderators not understand?
No disrespect to you JR, but That's a lot of suggestions, regardless of how strong they may be. Under HIPPA, I am permitted to use my records as I wish, the health care provider is obligated via HIPPA to abide.
quote: What I read in your diagnosis is that it was determined by clinical diagnosis you do not have bartonella. . . is this correct?
I am clinically diagnosed with Bartonella.
quote: You have many symptoms of bartonella so I don't know how anyone could miss it. Some of you symptoms include forgetting nouns, sore throat, insomnia, rage, depression, muscle twitching, headache, eye problems, feet hurt and irritable bladder. . .
That's most certainly me -- or at least I had those symptoms at various points.
quote: You said you greatly improved on levaquin but then relapsed - typical of bart. You said you got bad insomnia from rifampin, which is a typical herx in the treatment of bartonella which refampin is for. And you herxed on only 3 HH capsules a day? That is very much bart.
I thought it was the Levaquin, but at the time I was also fresh off IV Vancomycin and Oral Penicillin (A month earlier), and then when that ended, I ended up with sepsis from the PICC line and had to go to the ER. I was then given IV Levaquin and Oral Bactrim. I stayed on these for about 2-3 weeks.
I agree, I have some doubts, but the symptoms match the profile, so it's possible, especially given my response to antibiotics and antimalarials. It's not a far reach to presume Bartonella can be correlated.
I'm now presently on Levaquin, and I see little results after over a month of treatment. I tried to repeat the results and used each drug alone. Bicillin via IM (in place of oral VK Pen), Bactrim, and now Levaquin. The only one that caused a sharp reaction was Bactrim. Vancomycin can not be repeated as I am allergic.
quote:
Just my opinion, but I think you need to address bartonella with another doctor.
I agree, but instead I addressed it with the PA, who by the way I consider to be much better at her job.
quote: Look at your skin for these indications of bartonella (you can also buy Schaller's book to see what I am talking about). peas size brown spots, loss of pigmentation, pin head size blood blisters, swelling around feet, ankles, hands etc that does not dent, stretch marks that are red or purple, spider veins, broken blood veins, marking resembling stacked clams, marble like nodules under the skin that hurt when pressed, lumps along the shin bone, unusual skin tags, moles etc. . . .
I've read the book.
quote: Do you have a loss of motivation and a general feeling of apathy as though not connected to yourself and life? I can't imagine growing up with lyme and bart! Of course you would be diagnosed with ADD! I hope you can find a solution. Don't give up.
Thank you very much for your concern and for giving me all this information. I have taken measures to resolve all of it. Now let's just hope I don't have massive side effects or any other complications from the new treatments.
[ 11-22-2009, 01:40 PM: Message edited by: METALLlC BLUE ]
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by JR: Lou B entrusted this board to Jenifer and the new mods-
What part of: I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit. does MB and the moderators not understand?
LouB was a GREAT moderator/administrator of this board. Well-loved and respected by all. It has been difficult to step into his shoes and moderate this board. Questioning our abilities publicly does not help.
JR and anyone else, in the future if you have a question about a post and want the moderators' attention, please press the "report post" icon under the post and write us a note. It will come to us so that we can discuss it with you privately. Thank you.
Posted by springshowers (Member # 19863) on :
MB I did not realize you had a picc line before and have done all those IV abx and such.
Are you still thinking of getting a port? or no?
I am so happy I got one and am doing IV abx because I finally feel like I am actually getting somewhere. Not sure how long you did the IV treatments or what they were.. but.. curious what your thoughts are.
??
Posted by METALLlC BLUE (Member # 6628) on :
Hey Spring. Yeah I had a PICC line in 2005. I received IV Vancomycin for about 4 1/2 weeks, but I was allergic and had to stop that an the oral Pen VK.
I think IV is exceedingly useful for many people, I'm just not thrilled to go that route after what happened. Sepsis was a real *****.
Which antibiotics are you on? Eventually if none of these treatments work then we'll move onto IV, but not before exhausting lesser risk options.
Posted by springshowers (Member # 19863) on :
Oh sounds like you went through a lot .. Ughh that sucks..
I can see why you would want to exhaust the others first.
I have had not complications with my Port. It took me awhile to adjust to it and I am a sensitive person so It was weird for me..
I have been on IV for 3 months now. I did IV zith and IV Flagyl for 2 months straight. 500 mg of zith and 1500 mg of flagyl. Now I am on Doxy IV and am pulsing it 3 day s week 400 mg. I do ringers solution on my days off and also now pulse in some other things such as alinia and plaquenil and trying to make sure I have the cyst killers in there and also doing Artimisinin.
Ok prior to this.. I could NEVER tolerate any of this. I went through a lot the first two months. But it has now gotten me to where I can treat this disease. I spent years taking tiny doses of this and that or having such trouble taking oral meds and being told it I was herxing. I still do not know if my load was so high or I have some sort of issue taking orals. I dont know. I just know. This is 100 percent different for me. I know I will have to transition back to orals at some point. Either insurance will cut me off or my doctor will say enough. Not sure when that will be.
But I am going to stay on this.. for sure.. as long as I can. I am not cured or even "well" . But I have made huge moves in a short time frame compared to the 10 other years of trying to change things or get better. It took me 7 years to get somewhat better on orals and I relapsed. I knew I did not have 7 plus more years to inch back to that place. I just had to try the IV route. Glad I did.
Everyone is different. So..who knows.I have heard it does not help them and they like orals better. This disease is a mess and there is no one answer that will help us all.. sadly.
But learning from one another does help.. I think sharing has been the biggest learning experience I have had and I have only been online on the forums and such for a year.
So. anyway. i wish you all the best.
I noticed too there was a comment about checking out the mold or such in your house. Have you done that. what methods are you using? are you just using those mold growing kits and putting one in each room and outside to compare? or??
let me know.. i am needing to check out my house..
Thanks..
Posted by METALLlC BLUE (Member # 6628) on :
Update:
I'm responding again to the Malarone. It caused some significant depression at first when I increased from 2 tablets to 3, as instructed.
My LLMD told me to expect it, so mom and I watched out. I'm better from that, but now I started the Rifampin, and "oh my god" it's hitting something. I feel like the worst I've felt in probably years. Some type of die off is going on. I'm hopeful it's just that and nothing anything else. It "feels" like a massive herxheimer reaction. The side effects have been typical: some anxiety, red/orange urine, and debilitating insomnia.
The Seroquel did not work. I also tried the Xanax, and just like Valium, it caused the "reverse" effects that I wanted. My heart was pounding all night with anxiety and insomnia.
Last week while using the Rifampin, I was around 25% function. If I dropped to 20, I would have had to stop and contacted my doctors. 20% has always been marked by hospitalization, but now that we know many of the pitfalls from years of doing this, it would be unnecessary as long as I stopped treatment temporarily. Herxheimer reactions can literally kill if they cause acute damage during the immune system activation.
I'm waiting on the Rifampin blood work. I stopped it last Friday so I could get the results back to make sure my liver is ok. Hopefully the liver support my LLMD gave me does the trick.
I wrote a thread here about the events with the Rifampin:
quote:I noticed too there was a comment about checking out the mold or such in your house. Have you done that. what methods are you using? are you just using those mold growing kits and putting one in each room and outside to compare? or??
I have the test kits but I haven't used them. I've had too much going on. My numbers keep going down each time I test the Mold, and I've treated it extensively, so I probably am ok, but the method I'm supposed to use is the kits. I have two of them. My LLMD told me to put one in the bedroom and living room (Where I spend all my time -- I also had my AC's in those rooms).
So anyway, that's all.
Posted by David Miller (Member # 21583) on :
Sorry to hear all the hell you've been through MB.
I wish there was a way for you to try HBOT - sometimes just a couple of treatments will give a good indication whether it can provide a cure or not.
It sounds to me like you have heavy biofilm buildup - I can't imagine anything else that would withstand the onslaught of treatments you've been through. I was reading something last night about researchers looking into the chemicals used to clean pools because a variety of bacteria form biofilms on the side, but didn't see anything that looked like results you could use. I don't suggest drinking bleach:)
On the biofilms note, however - have you tried any of the proclaimed cures for biofilms? I've seen a few herbs suggested as useful in breaking them down.
My apologies if that was already covered, it's a very long thread.
Posted by sixgoofykids (Member # 11141) on :
Haritaki is good for biofilms. I could not take it in the form of Triphala, it was too strong, but Banyan herbs makes Haritaki alone. It is the herb that was used in that famous science project where the girl learned it broke up biofilms.
Posted by Larkspur (Member # 5131) on :
Hi all - it's been a while. I (unknowingly) broke up biofilms using Detoxamin (chealtion) in the fall and had a massive relapse!
My LLMD and I had know idea my bug load was so high. I had been functioning at about 90% or so..
It's been a rough few months..
Posted by METALLlC BLUE (Member # 6628) on :
So I began back on Tetracycline temporarily so I could take a break (symptom wise) from the last year of abuse I've subjected my body to. I've been working with Dr. H in NY, as you know. We tried everything except IV. He wanted to do it, I declined for now.
At any rate, exactly on the date I said I'd be very sick from the Tetracycline Herxheimer reaction, I am. Wednesday (today). I began the drug March 2nd, it is now 8 days in. By the 12th day I will improve from 35% to 40%. If fortunate, by the 14th day, I will improve to possibly 45%. I will then hit a plateau and remain there.
I have tried all the conventional drugs we typically use for Lyme, including Minocycline and Doxycycline. Yet, why is it Tetracycline specifically is the only one to produce this perfectly timed Herxheimer response and then improvement period?
The only other drug to cause improvements which were similar was Doxycycline. However, the Doxycycline loses it's effect after about 1 month. The Tetracycline doesn't lose it's effect for 6 -7 months, then it must be stopped for 2 months, and then rinse and repeat (8th day Herxheimer, 12th day Improve).
The other drugs which caused similar reactions in half that time (4 days) were Bactrim and Rifampin. Rifampin caused the Herxheimer reaction but never led to progress of any kind. Bactrim was discontinued due to side effects.
What is the common denominator here? I don't know. Tindmax, GSE, and other drugs showed no progress or change.
Lyme is definitely present. Testing confirms that, Malarone caused a significant decrease in breathing problems and night sweats, so it's presumable. The short reaction time to Rifampin and Bactrim are intriguing. The Herxheimer reaction caused by these two drugs is much different than those caused by Doxycycline or Tetracycline. They are perhaps 3 times worse, but also are shorter in duration. The reaction on Tetracycline lasts 2-4 days, the reaction to Rifampin and Bactrim lasts 1-2 days.
We could assume Babesia, Bartonella (or some other unknown infection), as well as Lyme Disease are responding to these drugs. Malarone led to improvements in night sweats and breathing, while Mepron, Zithromax, Arthemesiae, and Lariam did not.
It appears Penetration of the drug may be the problem. LDN did not result in any changes. Adrenal therapy improved test numbers drastically, normalizing their function, yet no symptomatic improvement took place. Three rounds of VFEND/Diflucan substantially lowered Stachybotry Chartarum IGA numbers, probably close to normal now, though I have not retested. It is assumed given the numbers lowered by about 1/3rd to 1/2 each cycle. Initially 6.9 (without treatment), then 4.8 after 10 days Diflucan, then 3.2 after about 12 days VFEND. I have just completed 17 days of VFEND. Given the last number was 3.2, the average decrease should be about 1.2 to 1.6, dropping the number to 2 or less. Normal is below 1. 17 days is a long cycle, so the number may even be normal. No progress in symptoms have been made, even as this number dropped.
The next therapies on my list are as follows.
Continue using:
Lamictal, 200mg x 2
Buproprion (Welbutrin) 200mg
Trace Minerals Research (liquid) 30-40 drops per day in Filtered water.
Chemet 400mg every 3rd night w/10 drops Algas, and 7 tablets Chlorella. (Detox for heavy metals).
Heel Detox Homeopathics (Liver, Kidney, Lymph)
Cholestapure (Detox Binder)
Lorazepam 2mg (Sleep)
Pentasa 1,000mg x 2 (Bowel inflammation)
Tetracycline 1,500mg
VSL, Theralac, and Saccroymycins Probiotics)
Magnesium 1 gm
I'm also eating reasonably well, and juicing vegetables (Green/Red Pepper, Carrot, Celery, Spinach, Brocolli, Cucumber, Romain Lettuce). I add Stevia, 1 packet
Fruit Shakes (1 apple, blueberry, strawberry), 2-4oz Uncooked Oatmeal, 1 cup Soymilk, 2oz Cottage Cheese, 8-16oz Filtered Water, and Whey Protein. I also add stevia 1 packet.
(The Veggie/Fruit shakes are done bi-daily. One day I do Veg, then next day I do fruit).
Dietary wise, I feel solid. Yeast issues are not present, and Lyme specialist agreed. Different diets were tried. None resulted in changes in symptoms other than bloating/gas. These symptoms change relative to gluten intake, but also to inflammation. When systemic symptoms improve due to drug therapy (such as Tetracycline), the bowel symptoms improve independent of diet.
My next plan is to cut out some of the things from this current routine, leaving a barebones framework. Cuts will be Tetracycline, Theralac, Algas.
Treatments which worsened symptoms in a "non-Herxheimer" response were Fish Oil (Multiple brands), and Vitamin D2 and D3.
Transfer Factor Plus led to "significant" improvements when used entirely alone 9 years ago. I'm going to give the latest brand another shot. When I improved, It only lasted one week, but the improvement was from 25% to about 50-55% at 9 capsules per day. Cost wise, this is not sustainable. No herxheimer reaction or flu-like symptoms were seen.
I will be starting the Bionic 880 in a few weeks. Rife therapy will wait as a result of the shorter treatment duration of the Bionic. All necessary tools will be used in the same pattern that Dr. W in Germany uses. However, instead of IV, the preparation of Sodium Bicarbonate will be taken at the same dose orally. I will try hard to cut my drug treatment to bare minimum, but it will not be entirely possible to remove them all, which is what Dr. W prefers. I will also be unable to avoid EMF fields, as I live in the city of Springfield.
If progress is not made, I will attempt to use the Bionic in another location where EMF is significantly reduced. Nosodes and other tools (Blood sample) will be used later.
That's my update.
Posted by map1131 (Member # 2022) on :
See, you are one with a plan. You've done your research. You know there is a much bigger picture than just taking some abx and miserable. You will change that plan, adjust that plan, anything to help yourself.
Someone questioned your protocols in an earlier posts I was reading. It's just so much more complicated for those of us experienced to tell others:
A+B-D+E-divided+F=success!!!!!!!!!! If one of us could patent the formula we would be rich.
Pam
Posted by seekhelp (Member # 15067) on :
Good luck MB. I wish you the best.
Posted by djf2005 (Member # 11449) on :
Good luck Mike, I know that your diligence will pay off. Keep at it.
Posted by CD57 (Member # 11749) on :
By Chemet, do you mean Chelex? I thought Dr H liked that product.
Posted by sixgoofykids (Member # 11141) on :
Thanks for the update. I'd stop abx two weeks prior to the Bionic.
EMF's were a problem in the beginning for me when I returned from Dobel. I bought a Philip Stein watch that counter-acts EMF's and haven't take it off except to shower since I bought it two days after I returned.
It took almost a year with the Bionic to reach remission. And, as you know, I did lots of detox along the way with it. Good luck!
Posted by METALLlC BLUE (Member # 6628) on :
Chemet is the prescription version of Chelex. It's used for heavy metal toxicity, especially lead.
Where did you buy the watch Six? How did you know that EMF's were an issue for you?
Posted by sparkle7 (Member # 10397) on :
Good luck, Metallic Blue!
I'm rooting for you! I hope you can come out of all of this illness & treatments someday soon.
Posted by sixgoofykids (Member # 11141) on :
I bought it in Las Vegas, LOL! You can buy them at their website though ... and on the website I believe they have listings of jewelry stores that carry them.
Interestingly, part of their sales pitch is doing muscle testing in the store. I saw the muscle testing on my husband using a cell phone that was on but not in use with and without the watch and was amazed. I bought it on the spot. This was two or three days after I returned from Germany.
I became sensitive when I started Bionic 880 treatment. I think that the treatment is doing things on the "physical" level (as in physics, not chemistry). That change made me feel strange when I was around heavy EMF's.
I am okay in a place that has wireless internet, but if someone is near me with a computer working off the wireless I can tell their wireless is on .... ie, my daughter turns her wireless on at work and I feel bad if she's next to me at home and has forgotten to turn it off .... not nearly as bad as I used to, now it's just a little energy drain.
Posted by METALLlC BLUE (Member # 6628) on :
Interesting. I'll wait to see if I react. As far as I know I've never reacted differently from the day I got sick until now. When I travel, it also didn't change.
I'll see what the Bionic dose. I do know the Tetracycline is causing me to still experience die-off today. It's Thursday, 9 days in, so only 3 days left until I feel better. (That's the prediction). Then Erica will arrive, and I'll begin therapy with her.
The Infusions may be an issue since it's not usual for physicians to be helpful with this type of thing. I'll see if my own N.P. is willing to help.
Posted by METALLlC BLUE (Member # 6628) on :
Thank you also for all the well wishing. I have no idea what is going to happen.
Posted by seekhelp (Member # 15067) on :
Did Erica get cured in Germany MB?
Posted by sixgoofykids (Member # 11141) on :
When I returned I didn't have the infusions. I took magnesium, burbur, drank a lot of water and used coffee enemas. Infusions would be best though. No telling how much help they really were especially since they had zinc and I needed KPU.
Posted by aMomWithHope (Member # 19255) on :
Good luck, MB, with your Bionic treatments.
This thread was very interesting to read.
I look forward to hearing about your experience with the Bionic.
I hope it finally brings you the relief and recovery that you so very much deserve.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by aMomWithHope: Good luck, MB, with your Bionic treatments.
This thread was very interesting to read.
I look forward to hearing about your experience with the Bionic.
I hope it finally brings you the relief and recovery that you so very much deserve.
For those who hadn't seen the update on the Bionic, I started a new thread. Here is the link to the Bionic Therapy:
Summary of Events: Treatment works, but it's not going to solve all your problems overnight. It takes work, it takes a lot of sessions (More than 5). I did 13 and I only made it to about 40-45%, and I was at 30-35% when I began. I don't know how it works, but it does.
Posted by DoctorLuddite (Member # 13853) on :
MB, How old are you? Have you satisfied yourself as to the origin of your high mercury/lead? You mentioned a low vitamin D, I didn't have time to read the whole thread (longest one I've seen, btw) but have you tried correcting that?
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by DoctorLuddite: MB, How old are you? Have you satisfied yourself as to the origin of your high mercury/lead? You mentioned a low vitamin D, I didn't have time to read the whole thread (longest one I've seen, btw) but have you tried correcting that?
1: 33 2: Yes, a lot of chelation over a year. 3: Stopped Vit D, makes me feel sick and the sick feeling does not resolve no matter how long I stay on it.
I am feeling better, and I am stable at 35-40% without antibiotics. The next step is killing these little bastards that remain.
Posted by DoctorLuddite (Member # 13853) on :
But what was the origin of the heavy metals? Amalgams? Tainted groundwater? Proximity to smelting operaton? Chelation can help, but you must halt ongoing exposure.
I would posit that the low vitamin D is related, and understanding why you get sick when you take it (do you also get sick when you go out in the sun?) might help you find a way to get your level up without getting sick.
Posted by METALLlC BLUE (Member # 6628) on :
I have news. Between my last response on Marchy 7th, I had been continuing Rife therapy using an EMEM3D2 machine at various frequencies. I have recorded and charted every single session in a chart as well as a one page write up. Rife therapy I believe hold benefits, but I believe that depending where you are in your illness, the type of power you should use makes all the difference.
For someone who is just beginning, an EMEM3D2 might be key, if they've done minimal antibiotics, and want to start Rife.
For someone who has treated Lyme an c-infections for nearly a decade with heavy duty antimicrobials, herbs, and 30,000 dollars later worth of therapy, a high powered Coil Machine is the way I'm going to go.
I'm awaiting for my order to be filled with John Stoller, but in the meantime I decided to add one varible to my routine. Since I was at baseline, it couldn't hurt.
[04-24-11] - Sunday
I began taking a cheap OTC product called MSN, which stands for Methylsulfonylmethane (MSM) is an organosulfur compound. The organic sulfer component does not cause allergies or side effects but is said to have profound anti-inflammatory effects, reduce allergies, reconcile Fibromyalgia type soft connective tissue pain, as well as treating severe athritis. The dose is extremely crucial as most people who use this supplement only take small amounts. Initially only 2 grams should be used once or twice a day, then as time goes on and a clinical response is see thru improvements, more is added until 4-8 grams is commonly taken. Some severe illnesses respond to doses as high as 60 grams. Fortunately, the supplement is dirt cheap and can be purchased in bulk. I bought 2.2 lbs of the organic crystals for 20 dollars. Given my reaction, let's hope it's followed by improvements in key areas.
I began taking MSM Sunday Morning at 2grams in the morning. I repeated the same on Monday. By Monday evening I started have excruciating headhaces and had to take pain medications (Ultram).
Here are the notes I took while it happened:
[04-25-11] - Monday
I laid in bed all night awake, even with large doses of Ativan, Sleep Aids, and Ambien. I had chills, fever, sweating my skin hurts to touch, my eyes are sensitive to light, and my ears are sensitive to sound. I have a serious migraine that is not responding to high dose Ultram, a prescription pain medication. It feels like the Flu multiplied x 10.
It is not a flu however. All my muscles ache and throb and walking on my joints or using my arms creates a poping sound, combined with arthritic pain. Clearly this is a Herxheimer reaction. I performed Rife therapy yesterday. MSM) is an organo-sulfur compound. The organic sulfer component does not cause allergies or side effects but is said to have profound anti-inflammatory effects, reduce allergies, reconcile Fibromyalgia type soft connective tissue pain, as well as treating severe athritis. The dose is extremely crucial as most people who use this supplement only take small amounts and the purity is not usually know. Initially only 2 grams should be used once or twice a day, then as time goes on and a clinical response is see thru improvements, more is added until 4-8 grams is commonly taken.
Some severe illnesses respond to doses as high as 60 grams. Fortunately, the supplement is dirt cheap and can be purchased in bulk. I bought 2.2 lbs of the organic crystals for 20 dollars. Given my reaction, let's hope it's followed by improvements in key areas. The product I bought I confirmed was in-fact 99.95 pure Methylsulfonylmethane. I wanted no added ingredients and no fillers and I found someone who had the perfect product.
[04-26-11] - Tuesday:
Alright, here is what I presume is happening. I took a shower last night, but I had to hold the wall. Everything was pinning and "heavy." I cleaned up, and immediately I began profusely sweating.
All night long I saturated my clothing and bed sheets and pillows. I changed them over 15 times each. This pattern of symptoms is associated with a parasitic infection similar to Malaria. It's found here in New England in Ticks, and produces very similar symptoms. Upon killing it, it too produces a die-off reaction. In other words, if you treat it, it makes you must must sicker for a few days during early therapy before improvements take place.
The next issue is Bartonella and Lyme diease. I've never had a strong reaction to antimicrobial medications like this except for the antibiotic BACTRIM and IV- Vancomyin, which is given in the vein.
[04-27-11] - Wednesday
Now, my joints don't hurt and aren't stiff like there were, but I am still sweating and feverish. I still have muscle aches and mild fatigue but the worst is over for now -- until the next dose of MSM kicks in. Instead of taking a break today, I took the same dose of medication from yesterday. I'll tough it out. I won't die, so it's a good idea if I want to get to the other side. I won't be able to do my Rife treatments, or Ride the exercise Bike or do any type strenous activity which sucks.
This is key information for people to consider, as I never provide reports until I'm 100% confident they are having a strong noticeable effect. Whether that effect leads to improves, I don't know. That's really the key issue, but these preliminary results are a start.
[ 04-28-2011, 10:17 AM: Message edited by: METALLlC BLUE ]
Posted by aMomWithHope (Member # 19255) on :
Any chance you have a detox pathway defect, i.e., can't detox or process sulfur?--thus the cause of these symptoms?
I hope it is a herx reaction instead and that you continue to improve!
Thanks for the update--always interesting info--look forward to reading more updates as you go along.
May it bring the relief you seek!
Posted by METALLlC BLUE (Member # 6628) on :
[04-27-11] - Wednesday Continued
The chances of it being a detox issue are extremely slim since I've never problems with Detoxification and I've used Sulfur medications.
I also took my morning dose of MSM and I'm still continuing to improve. Also, MSM has never shown to cause side effects of significance even in people with multiple chemical sensitives or people who had "sulfa" "sulfite" allergies. I took a nap and didn't sweat once during the naps.
I'm able to move around more, I have more energy, and I can easy do some light task if I wanted, such as clean up my kitchen, or fold some laundry.
I'm not doing these things however, my body needs time to recover.
[ 04-28-2011, 10:18 AM: Message edited by: METALLlC BLUE ]
Posted by aMomWithHope (Member # 19255) on :
MB, that's wonderful news and definitely promising!
I will keep MSM in mind and ask my child's LLMD if he recommends it for children.
I wish you continued success!!!
Posted by METALLlC BLUE (Member # 6628) on :
If you're really interested then see if you can get this book at the local library or find it used real cheap. It'll tell you everything to do. The Miracle of MSM:The Natural Solution for Pain [Paperback]
Again, the issue appears to be does. Many people use MSM in joint supplements, but the amount must be significant and pure to meet medicinal needs.
Remember, this is all preliminary. Saftey is solid, supplment is dirt cheap especially when bought in bult.
I encapsulate my own using 1gm pill containers.
The Book can be found here CLICK HERE Posted by METALLlC BLUE (Member # 6628) on :
[04-28-11] - Thursday
All night long I saturated my clothing and bed sheets and pillows. I changed them over 15 times each. This pattern of symptoms is associated with a parasitic infection similar to Babesia in my opinion.
I suspect the immense onslaught of sulfur attacked Bartonella, and thus Babesia surfaced. My reason to suspect this is on [04-27-11] I woke up, still tired but had more energy. I immediately got up and started doing things, but I made sure not to overdo it. This energy increase and decrease a wide range of symptoms signals this probability. I woke up today, and the same exact pattern took place. I am coughing a lot, breathing is more difficult, and the sweating is profuse and to the point where I would literally call it "insane." I also was running fevers of 100-101F on Tuesday
I'm going to attack the Babesia with my Rife Machine and see if a die-off response takes place. I will hit it hard with over 1 hr of therapy.
Posted by Jane2904 (Member # 15917) on :
Wow, MB,
I hope MSM is the answer for you. Best of luck
Posted by METALLlC BLUE (Member # 6628) on :
Since the Babesia has clearly surfaced and I've done almost 1 1/2 years of Babesia therapy, does anyone have any suggestions? I've never used Artemisinin, and I have a large supply of Malarone which appears to have suppressed it previously but didn't kill it.
Babesia: Ideas to kill it?
Posted by METALLlC BLUE (Member # 6628) on :
04-29-11 -- Friday
Interesting news. I may not have to worry about the Babesia for right now. It all depends on if this pattern continues: I only had to change my clothing 3 times last night. It appears things are slowing down. it's 4:30 a.m. right now and my body is telling me "Sorry Bro, but it's time to get out of bed." So here I am. Good news. I went to bed at 8:30 p.m. so it makes sense that I'm up so early. This is all good news, very good. I hope it continues.
Here is my latest plan of attack if all goes well:
I'm using my Rife machine on the same cycle now that I have been (Every 48hr). I rifed for Babesia for 1hr yesterday, and I'm still taking 2gm MSM daily. This organic sulfur is ****ing off a lot of the microorganisms in my system. I can "feel" them antagonizing my immune system. It's like a war inside. They seem to be losing finally, but whether they lose just a battle or lose the war is an entirely different story.
In 2 weeks, I'll increase the dose of MSM to 4gm per day, and every 2 weeks after, another 2 gm until I see the desired results.
Once I get my Coil Machine from John -- which I will get -- I'll then kick the **** out of the remaining buggers.
I may pull back on the MSM if I think it's suppressing some of the infections. If that is the case, I'll cycle MSM at a high dose until I have another Herxheimer Reaction. The moment the reaction peaks, I'll stop the med (MSM).
I'll keep Rifing, but will rest without MSM for 3 weeks, then add Tetracycline alone at 2g. I'll use that until the Herxheimer peaks, and stop that and then rest for 4 weeks, then I'll repeat the MSM.
All in between this, I'll be Rifing. I am certain this is the best routine I've ever come up with.
It follows all the patterns I've been talking about. It incorporates my theory of weakening the immune system (Higher intensity aerobic exercise), pulsing, deep penetration therapies to attack deep tissue, ligaments and other sequestered sites, as well as immuno-modulation, thus decreasing the inflammatory response systematically. The exercise will also be pulsed in order to coax the infection out of hiding. When the immune system is suppressed, the infection takes the opportunity, a bit like bait and switch.
I'll slam the high intensity aerobics during the short periods prior to and during Antibiotic use and MSM use to get optimal kill in tissues. The Rife will then clean up.
Co-infections will be dealt with as necessary in the same format
Posted by METALLlC BLUE (Member # 6628) on :
The effect of methylsulfonylmethane on the experimental colitis in the rat. Amirshahrokhi K, Bohlooli S, Chinifroush MM. Source
Department of Pharmacology, School of Medicine, Ardabil University of Medical Sciences, P.O. Box 56197, Ardabil, Iran. Abstract
Methylsulfonylmethane MSM, naturally occurring in green plants, fruits and vegetables, has been shown to exert anti-inflammatory and antioxidant effects. MSM is an organosulfur compound and a normal oxidative metabolite of dimethyl sulfoxide. This study was carried out to investigate the effect of MSM in a rat model of experimental colitis. Colitis was induced by intracolonic instillation of 1ml of 5% of acetic acid. Rats were treated with MSM 400mg/kg/day, orally for 4days. Animals were euthanized and distal colon evaluated histologically and biochemically. Tissue samples were used to measurement of malondialdehyde MDA, myeloperoxidase MPO, catalase CAT, glutathione GSH and proinflammatory cytokine TNF-α and IL-1β levels. Results showed that MSM decreased macroscopic and microscopic colonic damage scores caused by administration of acetic acid. MSM treatment also significantly reduced colonic levels of MDA, MPO and IL-1β, while increased the levels of GSH and CAT compared with acetic acid-induced colitis group. It seems that MSM as a natural product may have a protective effect in an experimental ulcerative colitis. Copyright � 2011. Published by Elsevier Inc.
-----------------Oxidative Stress
2: Cell Mol Biol Noisy-le-grand. 2011 Feb 12;57 1:62-9.
Effect of topical application of methylsulfonylmethane MSM, EDTA on pitting edema and oxidative stress in a double blind, placebo-controlled study. Tripathi R, Gupta S, Rai S, Mittal PC. Source
University of Allahabad, Department of Biochemistry, Allahabad, India. Abstract
No pharmacological treatment exists for lower extremity pitting edema, characterized by inflammation, found in chronic venous insufficiency. Treatment with EDTA, an effective metal chelator, was explored because it can modulate free calcium and iron and prevent further free radical production. However, EDTA may not effectively penetrate the cell membrane, hence methylsulfonylmethane MSM, reported to facilitate transmembrane transport, was added. The effect of topical application of a lotion containing MSM+EDTA was assessed in two phases of a double blind, placebo controlled clinical trial. In phase 1, patients having swelling in the lower extremities were randomly distributed to receive the MSM+EDTA lotion or a placebo vehicle alone. In the second phase, patients were given MSM as placebo followed by MSM+EDTA lotion for 2 weeks. The circumference of calf, ankle and foot for both legs were found to decline significantly after 2 weeks of application of the lotion/ but not placebo, and total antioxidant capacity FRAP and lipid peroxidation products MDA, assayed in blood, showed decline in oxidative stress. Application of MSM alone increased the swelling. Thus EDTA+MSM offers an efficacious treatment for lower extremity pitting edema, through reduction in oxidative stress.
-----------------Useful In Cancer Therapy
3: Methyl sulfone induces loss of metastatic properties and reemergence of normal phenotypes in a metastatic cloudman S-91 M3 murine melanoma cell line.
Caron JM, Bannon M, Rosshirt L, Luis J, Monteagudo L, Caron JM, Sternstein GM. Source
Department of Cell Biology, School of Medicine, University of Connecticut Health Center, Farmington, Connecticut, USA. [email protected] Abstract
BACKGROUND:
The most deadly form of cancer is not lung or colon, breast or prostate; it is any cancer that has become metastatic. Mortality due to metastatic melanoma, one of the most aggressive and deadly cancers, has increased steadily over the last several decades. Unfortunately, the arsenal of chemotherapeutic agents available today is most often unsuccessful at extending and improving the life expectancy of afflicted individuals. We sought to identify an effective and nontoxic agent against metastatic melanoma.
METHODOLOGY/PRINCIPAL FINDINGS:
We chose to study Cloudman S-91 mouse melanoma cells sub-clone M3, CCL53.1 because these cells are highly aggressive and metastatic, representing one of the deadliest types of cancer. Melanoma cells also had an experimental advantage because their morphology, which is easily monitored, relates to the physiology of metastatic cells and normal melanocytes. We chose to test methyl sulfone -Methylsulfonylmethane- as a chemotherapeutic agent for two reasons. Because of its chemical structure, we speculated a potential anti-cancer activity by targeting microtubules. Equally important, methyl sulfone has a well-established safety profile in humans. Surprisingly, we found that malignant melanoma cells exposed to methyl sulfone demonstrated the loss of phenotypes characteristic of malignant cells, and the reemergence of phenotypes characteristic of healthy melanocytes. Briefly, over time methyl sulfone induced contact inhibition, loss of ability to migrate through an extracellular matrix, loss of anchorage-independent growth, proper wound healing followed by contact inhibition, irreversible senescence followed by arborization with melanosomes in arbors as seen in normal melanocytes.
CONCLUSIONS/SIGNIFICANCE:
Methyl sulfone may have clinical potential as a non-toxic agent effective against metastatic melanoma. Additionally, methyl sulfone has promise as a tool to explore molecular mechanisms of metastatic transformation as well as fundamental processes such as cell migration, contact inhibition, wound healing and cellular senescence.
The anti-inflammatory effects of methylsulfonylmethane on lipopolysaccharide-induced inflammatory responses in murine macrophages.
Kim YH, Kim DH, Lim H, Baek DY, Shin HK, Kim JK. Source
Center for Efficacy Assessment and Development of Functional Foods and Drugs, Hallym University, Korea.
Methylsulfonylmethane MSM, also known as dimethyl sulfone and methyl sulfone, is an organic sulfur-containing compound that occurs naturally in a variety of fruits, vegetables, grains, and animals, including humans. In the present study, we demonstrated the anti-inflammatory effects of MSM in lipopolysaccharide LPS-stimulated murine macrophages, RAW264.7 cells. MSM significantly inhibited the release of nitric oxide and prostaglandin E 2 by alleviating the expression of inducible nitric oxide synthase and cyclooxygenase-2 in LPS-stimulated RAW264.7 cells. Furthermore, the levels of interleukin-6 and tumor necrosis factor-alpha were decreased by MSM treatment in cell culture supernatants.[/b] Further study indicated that the translocation of the p65 subunit of nuclear factor NF -kappaB to the nucleus was inhibited by MSM treatment in LPS-stimulated RAW264.7 cells, in which it helped block degradation of inhibitor of NF-kappaB. In addition, in vivo studies demonstrated that topical administration of MSM at 500-1250 microg/ear resulted in similar inhibitory activities in 12-O-tetradecanoylphorbol 13-acetate-induced mouse ear edema. Collectively, theses results indicate that MSM inhibits LPS-induced release of pro-inflammatory mediators in murine macrophages through downregulation of NF-kappaB signaling.
-----------------Skin Inflammation & Vasularity
6: J Cosmet Dermatol. 2008 Mar;7 1 :8-14. Combined effects of silymarin and methylsulfonylmethane in the management of rosacea: clinical and instrumental evaluation.
Berardesca E, Cameli N, Cavallotti C, Levy JL, Pi�rard GE, de Paoli Ambrosi G. Source
San Gallicano Dermatological Institute, Rome, Italy. [email protected]
OBJECTIVE:
This study aims to evaluate a topical treatment based on silymarin/methylsulfonilmethane S-MSM to improve erythematous-telangiectactic rosacea. METHODS:
Forty-six patients affected by stage I-III rosacea entered this double-blind, placebo-controlled study. Subjects were treated for 1 month. Clinical and instrumental evaluations were done at baseline, after 10 and 20 days, and at the end of the study. Itching, stinging, erythema, and papules were investigated clinically as well as hydration and erythema instrumentally with capacitance and color measurements. RESULTS:
A statistically significant improvement was observed in many clinical and instrumental parameters investigated P < 0.001. In particular, improvement of skin redness, papules, itching, hydration, and skin color occurred. CONCLUSIONS:
The combination of silymarin and S-MSM can be useful in managing symptoms and condition of rosacea skin, especially in the rosacea subtype 1 erythemato-telangiectatic phase. The action can be considered multicentric and multiphase because of the direct modulating action on cytokines and angiokines normally involved and up-regulated in the case of such skin condition.
Randomised, Double-Blind, Parallel, Placebo-Controlled Study of Oral Glucosamine, Methylsulfonylmethane and their Combination in Osteoarthritis.
Usha PR, Naidu MU. Source
Department of Clinical Pharmacology and Therapeutics, Nizam's Institute of Medical Sciences, Hyderabad, India.
OBJECTIVE:
Glucosamine, classified as a slow-acting drug in osteoarthritis SADO, is an efficacious chondroprotective agent. Methylsulfonylmethane MSM, the isoxidised form of dimethyl-sulfoxide DSMO, is an effective natural analgesic and anti-inflammatory agent. The aim of this study was to compare the efficacy and safety of oral glucosamine Glu, methylsulfonylmethane MSM, their combination and placebo in osteoarthritis of the knee.
PATIENTS AND DESIGN:
A total of 118 patients of either sex with mild to moderate osteoarthritis were included in the study and randomised to receive either Glu 500mg, three times daily for 12 weeks. - Notice the higher dose of 1,500mg of MSM, aka 1.5GM Patients were evaluated at 0 before drug administration, 2, 4, 8 and 12 weeks post-treatment for efficacy and safety. The efficacy parameters studied were the pain index, the swelling index, visual analogue scale pain intensity, 15m walking time, the Lequesne index, and consumption of rescue medicine.
RESULTS:
Glu, MSM and their combination significantly improved signs and symptoms of osteoarthritis compared with placebo. There was a statistically significant decrease in mean +/- SD pain index from 1.74 +/- 0.47 at baseline to 0.65 +/- 0.71 at week 12 with Glu p < 0.001. MSM significantly decreased the mean pain index from 1.53 +/- 0.51 to 0.74 +/- 0.65, and combination treatment resulted in a more significant decrease in the mean pain index 1.7 +/- 0.47 to 0.36 +/- 0.33; p < 0.001. After 12 weeks, the mean swelling index significantly decreased with Glu and MSM, while the decrease in swelling index with combination therapy was greater 1.43 +/- 0.63 to 0.14 +/- 0.35; p < 0.05 after 12 weeks. The combination produced a statistically significant decrease in the Lequesne index. All treatments were well tolerated.
CONCLUSION:
Glu, MSM and their combination produced an analgesic and anti-inflammatory effect in osteoarthritis. Combination therapy showed better efficacy in reducing pain and swelling and in improving the functional ability of joints than the individual agents. All the treatments were well tolerated. The onset of analgesic and anti-inflammatory activity was found to be more rapid with the combination than with Glu. AKA MSM is key and works fast It can be concluded that the combination of MSM with Glu provides better and more rapid improvement in patients with osteoarthritis.
-----------------Systemic Distribution Of MSM Efficient
8: J Agric Food Chem. 2007 Feb 7;55 3:1033-8.
Pharmacokinetics and distribution of [35S]methylsulfonylmethane following oral administration to rats.
Magnuson BA, Appleton J, Ames GB. Source
Burdock Group, 888 17th Street N.W., Suite 810, Washington, D.C. 20006, USA. [email protected] Abstract
Methylsulfonylmethane MSM is a sulfur-containing compound found in a wide range of human foods including fruits, vegetables, grains, and beverages. More recently, it has been marketed as a dietary supplement worldwide. The objective of this study was to evaluate the pharmacokinetic profile and distribution of radiolabeled MSM in rats. Male Sprague-Dawley rats were administered a single oral dose of [35S]MSM 500 mg/kg, and blood levels of radioactivity were determined at different time points for up to 48 h. Tissue levels of radioactivity at 48 and 120 h and urine and fecal radioactivity levels were measured at different time points for up to 120 h following [35S]MSM administration to rats. Oral [35S]MSM was rapidly and efficiently absorbed with a mean tmax of 2.1 h, Cmax of 622 microg equiv/mL, and AUC0-inf of 15124 h.microg equiv/mL. The t1/2 was 12.2 h. Soft tissue distribution of radioactivity indicated a fairly homogeneous distribution throughout the body with relatively lower concentrations in skin and bone.Approximately 85.8% of the dose was recovered in the urine after 120 h, whereas only 3% was found in the feces. No quantifiable levels of radioactivity were found in any tissues after 120 h, indicating complete elimination of [35S]MSM. The results of this study suggest that [35S]MSM is rapidly absorbed, well distributed, and completely excreted from the body.
-----------------Safety
9: Food Chem Toxicol. 2007 Jun;45(6):977-84. Epub 2006 Dec 13.
Oral developmental toxicity study of methylsulfonylmethane in rats.
Magnuson BA, Appleton J, Ryan B, Matulka RA. Source
Burdock Group, 888 17th Street NW, Washington, DC, USA. [email protected] Abstract
Methylsulfonylmethane (MSM) is a metabolite of dimethyl sulfoxide, and occurs naturally at low levels in many foods. MSM has received wide attention as a dietary supplement to promote joint health. The objective of these studies was to determine the developmental toxicity potential of MSM when administered orally to pregnant rats during the period of major organogenesis and histogenesis. In a preliminary dose-finding study, distilled MSM microprill (i.e., microspherical pellets of MSM) was administered by oral gavage at dose levels of 0 (vehicle control), 50, 250, 500, and 1000 mg/kg/day to 8-9 sperm-positive female Sprague-Dawley rats/group/day on gestation days 6-20. No evidence of maternal or fetal toxicity was observed. For the definitive developmental study, four groups of 24-25 timed-bred primiparous female rats were administered 0, 50, 500, or 1000 mg MSM/kg/day via gavage on gestation days 6-20. Maternal feed consumption, body weight, body weight gain, uterus weight and corrected body weight/body weight gain were unaffected by treatment. No evidence of maternal toxicity, and no significant differences in litter viability, litter size, or litter body weight were detected. Fetal evaluations failed to show any biologically significant increase in the incidence of anomalies in the MSM treated groups, and no malformations were seen in any of the fetuses. No evidence of fetal mortality, alterations to growth, or structural alterations were observed in the fetuses of dams administered 50-1000 mg/kg/day. Therefore, under the conditions of this study, the no-observed-adverse-effect level (NOAEL) for maternal and developmental toxicity was 1000 mg/kg/day.
10: NMR Biomed. 2005 Aug;18(5):331-6. Dimethyl sulfone - Methylsulfonylmethane in human cerebrospinal fluid and blood plasma confirmed by one-dimensional (1)H and two-dimensional (1)H-(13)C NMR.
Engelke UF, Tangerman A, Willemsen MA, Moskau D, Loss S, Mudd SH, Wevers RA. Source
Radboud University Nijmegen Medical Centre, Laboratory of Pediatrics and Neurology, NL-6500 HB Nijmegen, The Netherlands. Abstract
(1)H-NMR spectroscopy at 500 MHz was used to confirm that a previously unidentified singlet resonance at 3.14 ppm in the spectra of cerebrospinal fluid and plasma samples corresponds to dimethyl sulfone (DMSO(2)). A triple resonance inverse cryogenic NMR probe, with pre-amplifier and the RF-coils cooled to low temperature, was used to obtain an (1)H-(13)C HSQC spectrum of CSF containing 8 microM (753 ng/ml) DMSO(2). The (1)H-(13)C correlation signal for DMSO(2) was assigned by comparison with the spectrum from an authentic reference sample. In plasma and CSF from healthy controls, the concentration of DMSO(2) ranged between 0 and 25 micromol/l. The concentration of DMSO(2) in plasma from three of four patients with severe methionine adenosyltransferase I/III (MAT I/III) deficiency was about twice the maximum observed for controls. Thus, DMSO(2) occurs as a regular metabolite at low micromolar concentrations in cerebrospinal fluid and plasma. It derives from dietary sources, from intestinal bacterial metabolism and from human endogenous methanethiol metabolism.
[ 04-29-2011, 06:51 AM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
There are literally hundreds of studies demonstrating this. The issue is "dose", not so much duration since it works quickly in most people.
High dosing is necessary.
For those interested in doing further research in credible medical journals, please go to pubmed.gov and type in: Methylsulfonylmethane
This substance no only appears to be effective in all the areas I pointed out, but also as a solvent in industry. It's ability to help transport substances across membrane tissues may be useful in other applications, including with the use of antibiotics.
[ 04-29-2011, 06:53 AM: Message edited by: METALLlC BLUE ]
Posted by Razzle (Member # 30398) on :
Individuals who have CBS and/or SUOX methylation cycle genomic variants should not use MSM. This is because the CBS and SUOX genes influence the body's ability to process and detoxify sulfur compounds. If these genes impair the function of the enzymes sufficiently, then sulfur compounds become toxic chemicals even in small amounts, and can actually lead to metabolic crisis.
I have experienced such issues with a variety of sulfur compounds, including many of the foods that are natural sources of MSM, and I have a CBS genetic variant. My reactions are anaphylactoid if exposure levels are high enough... Yes, these reactions could be fatal. I can't call them anaphylaxis because they are not allergic, they are metabolic intolerances. But the symptoms are systemic and life-threatening.
Posted by METALLlC BLUE (Member # 6628) on :
Well, I guess people in Razzle's boat will need to watch out, but for me the risk to benefit was to go for it, especially with all the toxic drugs I'd taken. The first 48 hours were pure hell. I was told to expect that for a very long standing illness. I felt like I was dying, so anyone considering that should be aware that you may feel like hell too, as opposed to literally dying. Again, risk to benefit. You have to decide for yourself and talk to your physician.
So here is an update:
Friday - [04-29-11]
More energy. Felt well enough to do morning chores, ride the exercise bike, go for a drive, and laundry. Brushed my teeth, showered, did dishes.
Aches and pains are less thus far. It is only 10:45 a.m. here. I've been awake for 6 hours and going strong.
I have only been for a drive twice in the last 6 months, and today was one of them.
Posted by tickled1 (Member # 14257) on :
Wow! I'm so excited for you that this may be the key. Can't wait to hear ongoing updates!
Posted by METALLlC BLUE (Member # 6628) on :
Ongoing updates so far have been positive. As I increased the dose, I did not have the repeat flu-like symptoms but I've gradually felt a reduction in pain, inflammation, and an increase in energy and mood.
It's still too early to confirm that this isn't a placebo effects or a coincidence, but I will continue to update.
If this pattern continues into the next month, with a steady uphill pattern, I'll be inclined to recommend it. For now, I can only recommend researching the topic for oneself.
Posted by METALLlC BLUE (Member # 6628) on :
Sunday - [05-15-11]
It has been about 3 weeks since I initially began at 1gm. I climbed each week about 1 to 2 grams, until I reached 5 grams last week.
The first few days were quite distressing, with massive Detoxification. It's the type of symptoms you might experience withdrawling from a narcotic, with wide spread systemic aches, fever, chills, fatigue, and a lot of pain.
After that, I improved around 2 g, and reached 45% at my maximum, which is significant, given that is the best I reached with antibiotics orally.
However, as the dose increased beyond 3g, symptoms gradually worsened, with feelings of fatigue, insomnia, and just general malaise. The feelings you might have following a night of drinking too much alcohol.
Here is my theory. While the MSM has a potent inhibitory effect on the immune system, it's also extremely potent at producing Glutathione in the liver. This causes the body to try to detox from typical things it comes in contact with or stores during therapy from Lyme or just general disease.
The detoxification process can only move forward at a very particular speed for each individual, so the more MSM I added, the more of a toxic burden my body was attempting to remove, and it could not keep pace, thus symptoms worsened.
Another piece of evidence that leads me to this conclusion is that I smell extremely bad -- body odor, especially after working out. Previously prior to the MSM I never smelled, but now it's potent. I suspect my body is removing the toxins through pores, especially where major lymphnodes are present under the arms and groin. These toxins must be have fatty content or other be organic, because the bacteria are feeding on it, causing the smell.
So, that is my thoughts. I will cut back, and I'm considering a Tetracycline combo in a week. I will add a high dose of Tetracycline, probabl 2g or higher per day, for about 2 weeks. When the Herxheimer hits, I will immediately cut the drug, and rest for a few days and detox. I will then either repeat the MSM at a low dose, or possibly a much higher dose. We'll see what happens. Pushing appears to be helpful in seeing where to take the therapy but not so hard that it leads to overwhelming the system.
So, it clearly is powerful, but whether it can lead to significant progress remains to be seen. Temporary progress has been seen which can not be attributed to any other therapy.
Posted by tickled1 (Member # 14257) on :
Really interesting.
So are you still seeing a LLMD or are you going it alone now?
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by tickled1: Really interesting.
So are you still seeing a LLMD or are you going it alone now?
I've been alone since the end of 2009. My doctor had tried everything except IV antibiotics. I'm saving those as a last resort.
Posted by gailth (Member # 30851) on :
metallicablue, have you tried the salt/vit c protocol? It has helped so many people. I'll start tomorrow and I will post result. It is a long treatment though but conventional treatment are eternal. Take care
Posted by gailth (Member # 30851) on :
metallicblue, have you tried the salt/vit c protocol? It has helped so many people. I'll start tomorrow and I will post result. It is a long treatment though but conventional treatment are eternal. Take care
Posted by doopideedoo (Member # 31675) on :
quote:Originally posted by METALLlC BLUE: Sunday - [05-15-11]
Another piece of evidence that leads me to this conclusion is that I smell extremely bad -- body odor, especially after working out. Previously prior to the MSM I never smelled, but now it's potent. I suspect my body is removing the toxins through pores, especially where major lymphnodes are present under the arms and groin. These toxins must be have fatty content or other be organic, because the bacteria are feeding on it, causing the smell.
I came across a blog post the other day which mentioned that sulfate may feed candida, and that one possible sign of this might be bad body odor.
It's just shy of half way down the article. Look for the paragraph that starts with "One researcher..."
Posted by METALLlC BLUE (Member # 6628) on :
I stopped smelling a few days after doing a lot of exercising and drinking filtered water with trace minerals added.
My immune system definitely turned out. I've never had Candida problems, I was tested via stool sampling.
I'm in my second week of Tetracycline therapy combined with MSM. I should notice a hit within a few days as the Herxheimer reaction appears.
Posted by ks90 (Member # 31737) on :
Wow. You had this for 20 years. I would have shot myself. No, better yet, I would have shot myself while jumping from a bridge.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by ks90: Wow. You had this for 20 years. I would have shot myself. No, better yet, I would have shot myself while jumping from a bridge.
Trust me, I thought about it a lot. I've had it for even more than 20 years, it's just that I only became "significantly" sick for a period of time at age 9. Prior to that I had a lot of problems too but I was young and my parents and doctors never attributed it to my current condition.
Dr. H & L believe I was 18 months old when it began given the reports from family. Apparently I went from being a very calm and loving child to violent and manic. They told me I would chew furniture and scream.
The key to my survival has been a combination of luck, lucid periods of intelligent decisions on my part, and my unbreakable promise that I made to myself.
At age 17, I had been in and out of psychiatric units twice. I remember standing in the shower and this looming depression was consuming me. I was bleeding from my rectum, my heart was throbbing, my head was throbbing and faint, my eyes sensitive to light and my skin felt like I was being burned alive. Everything in my body was failing. The inflammatory response caused by the infections was so chronic that one autoimmune disease after another was appearing.
In that shower, that night, I asked myself: It's time to make a clear decision and whatever the outcome, I will follow thru no matter how much pain or hard work is involved. One side of the equation was death, the other life. If I chose death, there was no possible way for me to find a solution, and curiosity for me is like breathing is to most people. I had to do it, I had to know. Yet, the overwhelming suffering was so profound and disturbing that I could not keep going. I had to be kind to myself. If I did end it, was I doing what was right? Was ending my suffering fair? After careful thought, I felt it was the best option under the circumstances if I could not obligate to the other. I chose to stay alive and see the process thru to the bitter end. I would let the disease kill me rather than take my own life. In that decision -- that promise -- I knew it would be possible to defeat the disease, but I also knew there was no guarantee, since I didn't even know what I had. I wasn't even diagnosed correctly yet. I not only needed to find out, but even if I did, could it be cured?
It took another 7 years before I was diagnosed correctly with Lyme, and another 8 years after that before the co-infections were discovered. So, I survived on a promise for 15 years.
Had the infection taken hold of parts of my mind that prevented me from considering the possibilities, I just may very well have ended my life and it wouldn't have been my fault for it is the only possible way I would make that decision, and I suspect it's often why other people end their lives too. Foresight. If I lacked the ability to imagine a future where the problem was solved, then that would be all.
For those who made the other decision, I completely understand and think no less of them for it.
Today I still have not cured the infection(s). I still don't know if I will, but I won't stop until I find out.
For anyone considering one choice or the other, it's all on you. My only advice is to write notes to yourself over a period of months to find out if "you" are still inside there. I wrote diary entries because I knew the personality changes, memory loss and other abnormalities were like gaps in time. I could see myself at times doing things and sayings things to people that I know inside that I could never do or say and still live with myself. Yet, I did them.
Not only was the body broken, but so was the mind, so to make this decision, you've gotta have an idea of what the true you really wants.
Posted by METALLlC BLUE (Member # 6628) on :
Update: MSM did not work, nor did additional cycles of Tetracycline. The infection has adapted.
Rife therapy with the EM machine was a failure after over 100 sessions (carefully documented HERE)
It's time to move to the IV. I've decided to return to Dr. D in Boston, given he and I discussed and previously worked on using IV antibiotics. I had not returned to the IV for a lot of reasons, 1: Trauma from the last septic process that nearly killed me, and 2: I felt I hadn't explored the lower risk options, although those lower risk options had almost no science to support them, the risk to benefit was appropriate at the time. I've dealt heavily with Co-infections under the care of Dr. H in NY, but Dr. D is affordable, takes my insurance, is willing to write the scripts after thorough debate and planning, and my primary at home will now be fully in the loop and capable of providing local care if anything goes arong. I also have a surgeon on hand for any line/inserts.
Now, it's IV time. I'm performing a number of activities and need your help:
1: Retesting via Igenex, complete panels for Lyme 5060, and the full Co-infection panel, as well as Bartonella Fish and Babesia Fish, and the CD57 that they now offer. 2: Local Retesting of blood work, including viral, bacterial, parasitic, fungal, and other forms of infection.
I need help choosing which tests to run through my local lab, including immunological testing, Gene testing or anything else that might be pertinent to giving me information.
Here is what I have listed so far:
Igenex
6050: Lyme Disease: Includes IFA, IgG and IgM Western Blots and PCR (whole blood and serum):
5090: Babesia, Ehrlichia - Anaplasma phagocytophila (HGE) or Human Monocytic Ehrlichia (HME), and Bartonella. IFA antibody tests: Babesia microti-#200, Ehrlichia: #203 Anaplasma phagocytophila (HGE) or #206 Human Monocytic Ehrlichia (HME), Bartonella - #285 and Babesia FISH-#640.
CD57 Test - It is expressed on both, natural killer (NK) cells and T lymphocytes.
Regular Lab:
Ehrlichia, Ehrlichia serologies & PCR
Bartonella Hensale & Quintana, Serological, cultures, or PCR
Tularemia, Serologies
Rocky Mountain Spotted Fever (IFA) & PCR
Relapsing fever serologic testing
Chlamydia Pneumoniae Serological testing & PCR
Mycoplasma Pneumonia PCR
Mycoplasma fermentans PCR
Toxoplasmosis polymerase chain reaction (PCR
Babesia Microtic Smear Serologic testing for antibodies against Babesia (both IgG and IgM) & PCR
Babesia Ducani Smear, Serologic testing for antibodies against Babesia (both IgG and IgM) & PCR
Viruses:
Cytomegalovirus CMV pp65 antigenemia test (IFA) and PCR & ELISA (Or IgG, IgM)
Human herpesvirus 6 & 7 (PCR or Serology)
HSV 1 and 2 IgG and HSV 1,2 Screen, IgM, EIA Antibody levels. If the HSV 1,2 Screen, IgM, EIA is positive, an HSV 1,2, IgM, IFA
Colorado Tick Fever (CTF) complement fixation & IFA
Epstein-Barr virus Serologic & Mono Spot
Coxsackie A and B (B more important) PCR or Serology
Immunological:
Cytokines IL-6 and TNF-alpha
chemokine CXCL13
Endocrine:
Testosterone: total testosterone with sex hormone-binding globulin (SHBG)
*What "specific" tests should be done for the Endocrine system or any other recommended tests? I.E. Serology, IgG/M, Smear, etc.
Information on IV supplies
I'll also need information on what type of IV line will be most effective for reducing complications. I do want to continue working out if possible (Biking) with the line, but I'll give up things if necessary. I'm thinking a chest port may be most appropriate, but I'd like to know what tools I'd use to cover it and protect it. I'd like to know the details about how it's maintained, who deals with it (nurse?) what, who, how, why, when, where basically.
IV Formulation Combinations
I'll then need help formulating an IV combination therapy that will be most potent based on my prior response to medications. I responded very well to Bactrim, Vancomycin, Tetracycline, Doxycycline and Malarone.
That's all I have to go on. There are still many drugs I have not tried, or drugs that work differently when taken via IV verse orally. So, combination therapies? Where to begin?
I'm not concerned about Detox and all the other supplements surrounding this process. I already know what to do on those fronts.
Additional concerns are that I developed bad allergic reactions to Vancomycin and "probably" Bactrim. So I need alternatives that work on the same mechanisms of the bacterium while using a different drug if possible, or combinations.
[ 07-05-2011, 03:06 PM: Message edited by: METALLlC BLUE ]
Posted by map1131 (Member # 2022) on :
MB, I'm glad you are posting your findings. I have been worried about you and I think you knew that I didn't agree with your rife protocol.
I'm glad you are stepping back and rethinking this whole BIG picture. I too last week had blood drawn and sent to Igenex.
$1600 worth of tests and gave them my credit card number. My primary Insurance is Humana and I know I'm going to have to fight and appeal process to get them involved. They will one way or another.
Medicare will also have something to say to Humana about paying their part. So I will fight that battle when it happens.
Humana doesn't know that I'm not the same insuree as 8-9 yrs ago. I backed down after losing my first appeal, too ill to fight and just accepted our paying. No more!!
Good luck with the regrular labs. Now they can find mycoplasma pn, HHV-6, EBV, CMV, c-reactive protein, thyroid including t3 t4 tsh and TPO AB, which shows if you have Hashimoto's, immune system attacking thyroid.
I was reading Amy Tan(famous author with Lyme) last night. They drew blood on her and intentionally sent if off to 5 different labs.
The results were all over the board. It was the TRUTH. Most of these labs are just about worthless unless they happen to have a good lab person actually using the tools and the work needed or the best trained to do this work.
It is really sad that WE are trying to find answers to very complicated situations and we must depend/rely on others to know how to do the job correctly.
It matters if I have mycoplasma pn. I have lyme, most likely bart and bart(soon to hopefully find those answers), so all these viruses that I test highly positive for are relevent to my body and health.
I don't want to hear the bu!!crap that many people have these simple viruses in their body and they aren't important. These people need to go back to medical school and get a real education on the NEW SUPER bacteria, protoza, parasites and viruses that are making our patients very ill.
Oh by the way if you are considering going to endocrine specialist. You must educate them also. You will need to educate every direction you turn.
That's okay because that is why we are here is to educate. But my new endocrine said I was on too much thyroid. She lowered my dose and it made me into one crazy woman.
She told me that the lower dose was correct and I keeded to see psyco doctor about my depression meds. She wanted me to see a specialist for each of my sx. HELLO????????????????
I'm blessed that I have a PCP that's been with me since 98-99 when this nightmare began. Yes, I ventured off and seen specialist here and there.
Found them to be ignorant or unwilling to learn. I've had 2 that got it....my eye doctor and my therapist, in 12+ yrs. All of the alternative type docs get it, mostly.
Never know I might go back to LLMD, but I do know it won't be for abx unless something is killing me bacterial wise.
I wish you the best. I hope you find some answers and can finally reach some degree of improvement.
Don't get rid of that rife machine. It might help you eliminate some of the smaller evils haunting you. You never say never.
Pam
Posted by METALLlC BLUE (Member # 6628) on :
Pam, Thank you for your response and experience. I've been thru all the same things -- like a lot of people here, so I can say I really relate. I'll just keep telling myself that somehow I'll work this out and find a way. The truth is though, I'm so tired. My attitude needs some serious adjusting if I want to keep my head up and stay motivated. Ironically it's pushing against the tide to force yourself to adjust your attitude of being helpless and hopeless when the situation really is that way. So be it though. Lie to yourself if it'll get you thru to the end, and that's where I am. It's a strange place to be.
Posted by lymewreck36 (Member # 4395) on :
MB, I just ran across your post. All traetments have failed me. I'm thinking about going back to Dr. W for Bionic 880. First time, 5 treatments didnt' take me to health, but this time will try to run it longer and buy the machine. Any advice. My body is rejecting all medication and I'm nearly face down, bed ridden, my brains swimming so that I think I am loosing my mental capacity quickly.
Cried my eyes out tonight. Think I"m at the end and should "prepare" myself.
Mary
Posted by lymewreck36 (Member # 4395) on :
Metallic Blue, how do you continue. I think about ending it a lot, but I fear going to hell, and I have three beautiful daughters with chronic lyme. What would I teach them.
Lord help us all.
God bless you MB. I will pray for you tonight really hard. I don't pray enough. Tonight I will.
Mary
Posted by Robin123 (Member # 9197) on :
I feel for you both - I have witnessed turn-arounds in hopeless cases here before - via stem cell injections, oxygen dives, the right meds or herbs or supplements.
Mary, I haven't read much about what you've gone through, but have you tried the herbal route? Any of the herbal remedies?
I'm a lighter case than you both, but still have felt stuck. I have experienced four breakthrough treatments where I have felt previously stuck, the latest being detoxing with FIR so I can start to handle chemicals again, as in touching materials and being around smells -
I think you need to keep asking and looking for what people try that you haven't tried yet.
Posted by map1131 (Member # 2022) on :
I'm always open minded to the next healer and sure enough I got some great info Friday.
I looking forward to making some phone calls tomorrow morning. I'm not giving up, no way.
lymewreck, please don't think or write things like that. It is scarey to me to read when someone says they want to give up.
Don't know you, but I just don't want anyone in this situation to feel or have to think that way.
Don't lose hope. It's very hard work and everything is so expensive and many things are out of pocket expenses. Where there's a way there's a way.
I'm personally wearing alot of armour the last couple months but I have too to get thru what I know must be done. I'm truly blessed and only a messenger.
Robin, I know that word stuck. I'm stuck and don't know which way to go. But I'm going somewhere.
Pam
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by lymewreck36: MB, I just ran across your post. All traetments have failed me. I'm thinking about going back to Dr. W for Bionic 880. First time, 5 treatments didnt' take me to health, but this time will try to run it longer and buy the machine. Any advice. My body is rejecting all medication and I'm nearly face down, bed ridden, my brains swimming so that I think I am loosing my mental capacity quickly.
Cried my eyes out tonight. Think I"m at the end and should "prepare" myself.
Mary
You can visit my post on Bionic therapy if you wish. It "seemed" to work, enough where I would continue if I had access that was easier. Search for my name and the subject "Bionic" and you'll find a post about preliminary results as well as a comparison of Rife to Bionic.
I went the Rife route using only one machine. It failed. This dose not reflect failure of the concept, just as the Bionic would not reflect failure if it worked for others but not myself.
Don't quit. Don't you want to see how the story ends? It's possible to solve this problem. Like I've said, if we can build planes, trains, computers and come up with some amazing ideas -- then we can solve this too, we just need to stick with it long enough.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by lymewreck36: Metallic Blue, how do you continue. I think about ending it a lot, but I fear going to hell, and I have three beautiful daughters with chronic lyme. What would I teach them.
Lord help us all.
God bless you MB. I will pray for you tonight really hard. I don't pray enough. Tonight I will.
Mary
Mary, see post time stamp: May 29, 2011 09:05 PM
That will tell you how I do it, and why I made the choices I have. Thank you for the prayers. Unfortunately as time has passed I realized that I'm totally on my own -- aside from advice from people here and there. But ultimately, I have to make the choices that will either bring me to health or failure. Whatever the outcome, I'm ready.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by gailth: metallicablue, have you tried the salt/vit c protocol? It has helped so many people. I'll start tomorrow and I will post result. It is a long treatment though but conventional treatment are eternal. Take care
I never answered this question. No, I actually had not done this. I suppose I could go another year or two doing something like this or the Marshall Protocol, but it's gotten to the point where family and friends see me circling the drain and feel it's time to hit the highest risk therapies.
I think it's time as well. It could be the biggest mistake of my life, or it could be the key. Whatever the outcome, the Salt C and other treatments will still be waiting. I just can't wait anymore. I'm dying spiritually in this apartment. It's been 10 years of different treatment methods, and 3 decades of misery. It's time to take the biggest leap.
Posted by METALLlC BLUE (Member # 6628) on :
I added some additional tests based on Dr. Burrascano's guidelines. Here are some of them:
Endocrine:
Testosterone: total testosterone with sex hormone-binding globulin (SHBG)
Untill I can come to the Reality of what I just digested from YOUR LIFE...
I appreicate The TRUTH and Honesty in this.
I am thinking Salt.. The Finest healing salt in this world... if I am going out in A Blaze of Glory... let it be that I salted my self to death to beat this PLAQUE... Life is to Love One another.
Posted by METALLlC BLUE (Member # 6628) on :
Update:
I moved onto a new Lyme Specialist in CT after being "let go" by Dr. H in New York.
My Lyme Specialist thinks he knows what is keeping me sick and he thinks there is good reason to be hopeful. The news was very surprising. My Heavy Metal test wasn't a shock -- excessively high lead levels, moderately high Mercury levels. Lyme Disease IFA was Equivocal and both Western Blots were Igenex positive. The Bartonella Henslae IGG came back positive (This was surprising), as well as Rocky Mountain Spotted Fever (Also surprising). Ready for the big surprise? What came My blood smear for FL-1953, also known as PROTOMYXZOA came back "significantly" positive, with widespread massive biofilm production in the blood.
This infection was never treated, Ivermectin is the treatment of choice thus far among people diagnosed with it, and the progress can be substantial. Therefore, the doctor is going after this, as well as the other infections, and I'm using two very simple treatments to do it: Artemisinin Essential produced by Hopkington Pharmacy in Massachusetts, and Compounded Ivermectin in it's purest form starting at 1mg. The AE is taken 2 caps x 2. The AE has heavy metal binding agents in it. Here are the ingredients: Artemisininm, Essential Phospholipds, Calcium EDTA, Alpha Lipoic Acid, and Olive Oil.
The biggest problem with FL-1953 is it produces massive amounts of biofilm. To give you an idea, think about the plaque buildup that takes place on your teeth over time. That's "biofilm" Now imagine your blood and arteries being filled with this. Other infectious diseases associated with ticks seem to have evolved together, with this infection providing a nice safe niche in the form of the biofilms. This information I'm presenting isn't new per se -- the infection of FL-1953 was discovered in 2009 and named in May of 2011. Biofilms have been suspect in Lyme Disease for a long time now. Treatments which break up Biofilms, including AE with it's EDTA, are useful in gradually tearing down the wall.
It is unwise to attack the biofilm or infection quickly or with heavy treatment. Like Lyme -- the consequence will be a massive flare-up of the disease, thus a "gentle" approach over a longer period of time is optimal to treat. People are free to share this information. The Ivermectin they can order if they can get their physician to send the prescription to Hopkington Pharmacy and start with a compounding of 1mg, and gradually increase each week by 1 mg until you reach three -- but only if symptoms do not increase. If symptoms increase substantially it means you've gone too fast for your particular case. The AE is over the counter and can be purchased I believe from Hopkington possibly, or you can get your doctor to order it for you and pay him/her directly. Hope this helps.
So, bottom-line, the reason some patients with severely chronic Lyme Disease and co-infections may be because they also have this co-infection which requires a very specific plan of attack that often isn't incorporated in the therapies offered by most Lyme Disease specialists.
This is being found in many other conditions as well, such as patients with Fibromyalgia, CFS, MS, ALS, etc.
Some people have asked why the Ivermectin must be compounded initially:
The reason for the compounding is that it's purer, and you can better control the dose early in therapy. If you're reacting heavily and flaring up on Ivermectin, it's too much, otherwise those doses are fine. The dose for the Ivermectin Compound Agent is "For 2 weeks take 1 capsule (1mg) every 3 days. After two weeks, increase to 1 cap (1mg) every other day, and yet again after two more weeks take 1 cap (1mg) every single day. The dose then climbs from there to 2 and 3 along a similar pattern. The dose for the AE (A Essentials) is 2 capsules twice per day for 5 days, then the weekend off, then another week, then weekend off, and then another week (So 3 weeks in total you're taking it with the weekends off). After your third week you take the entire fourth week, including the weekends off, and then you start over and rinse and repeat.
Posted by METALLlC BLUE (Member # 6628) on :
I also continue to Rife. The Coil dose seem to help, but it only gives me about 5% points thus far.
Posted by seekhelp (Member # 15067) on :
MB, I'm curious as to the name of your new LLMD. The doctor sounds VERY educated. If you can PM me, I'd greatly appreciate it.
Posted by Haley (Member # 22008) on :
This is incredibly exciting. Please continue to post on the Ivermectin thread as well, so we can know your progress.
I am on ivermectin and so far I beleive this is going to help me get well.
I personally believe my problem is filarial worms due to all of my symptoms. These parasites have a symbiotic relationship with Rickettsia(sp) which explains my high RMSF titers. I have always responded to Doxy and Mino, also Flagyl. The other abx that really got me was Rifampin which can treat Filiarial worms.
I remember that tetracycline helped you also in the past.
Thank you for all the detailed information on the AE. I will check that out.
Please keep us posted MB
Posted by CD57 (Member # 11749) on :
Yes MB so glad for your posts, they help everyone. I really hope the Fry thing is a breakthrough for you. I had similar results on my smear and was told that folks who have been on long term abx have more biofilm. Tough huh?
Posted by sparkle7 (Member # 10397) on :
Interesting! Thanks for posting. I hope this will get you well.
Posted by tickled1 (Member # 14257) on :
I'm SO excited for you! Awesome news! I wonder if you see the same LLMD as me. I'll PM you.
Posted by lymenotlite (Member # 33166) on :
Getting rid of intestinal parasites is very important since 70% of the immune system is in the guts and apparently it is our immune system that does most of the work.
Early on I was given a stool test which went to Genova Diagnostics. Turned out I had the most common intestinal parasite which was blastocystis hominis. Alinia did the job of getting rid of it.
Posted by CD57 (Member # 11749) on :
I don't think Ivermectin gets into brain?
Posted by Haley (Member # 22008) on :
I do think it gets into the brain and my LLMD said that it does. I have been off and on IV meds for over 2 years. I took 1/2 pill of Ivermectin and I could feel that it went into my brain much the same as IV but stronger!
Posted by tickled1 (Member # 14257) on :
Do I have this right? Is Heartguard for dogs Ivermectin?
Posted by BoxerMom (Member # 25251) on :
Metallic - I am so happy for you!
Only on Lymenet do we congratulate someone for identifying their potentially life-threatening parasitic infection. And that's why we're so great!
I continue to rule in/rule out various tick-borne infections. The fun just never stops!
I plan to try Ivermectin on my next round, as I am currently herxing my face off on antibiotics and antiparasitic herbs.
I can't wait to hear how you do on your new program.
Again, congratulations. Your persistence has paid off.
I hope you find much healing in your very near future!!
BoxerMom
Posted by Haley (Member # 22008) on :
Oh and MB. You should seriously write a book with the kind of notes you take.
Posted by jackie51 (Member # 14233) on :
Great news. I hope you continue to do well.
Posted by Abxnomore (Member # 18936) on :
All I can say is WOW. I wish you the best with your new protocol. I hope this is the final link towards moving toward your recovery.
Posted by Tammy N. (Member # 26835) on :
MB - I have been thinking of you! This is great news to hear!
I felt MUCH better after being on Ivermectin for just 2 weeks. Maybe related to this infection?? Now I want to be tested also.
Please keep us posted. Routing for you! Tammy
Posted by nefferdun (Member # 20157) on :
That is great news. Are you following Dr F's diet suggestions? I am on and off it myself but think it should be the next move for me.
I took ivermectrin horse wormer once and had no reaction at all. Does that mean anything? I squirted the amount for my weight on a cracker and ate it - it was so awful. No wonder my horses hate it so much.
Posted by CD57 (Member # 11749) on :
Neff -- how long did you give it? Looks like it takes awhile.
Posted by sparkle7 (Member # 10397) on :
It took me a few days before I had a cleansing reaction to the ivermectin. It tastes awful. I used to chase it with some yogurt & something sweet.
It great if you can do this with an MD & take the compounded version - but I did the horse paste & it went well. I took it for about a month off & on as per my dowsing.
I also added in pyrantel pamoate & praziquantel. I don't know if I'm "done" with parasites but I have to deal with yeast now. It might be the order of things - I don't know?
Posted by sparkle7 (Member # 10397) on :
PS - Yes, I believe it's the drug in Heartguard.
Posted by jdp710 (Member # 34017) on :
A long video but interesting to watch on her experience with FL1953.
I had a miserable 2011. I heard about the research in November. In early December I tried it, and had a horrible 3 week herx. Once through that I felt better than I had in all of 2011. I've since added nattokinase and serrapeptase to try and break the biofilms some more.
I'd love to see Timothy Lu's biofilm therapy applied to lymies, but it hasn't happened yet:(
MB, I wasn't surprised that rifing didn't get you well and I'm delighted to hear that you may have, after two decades, found the key to your illness. An untreated disease that builds strong biofilms explains everything you've gone through.
Thanks to your posts here, your hell may help others escape the same fate. Please keep us informed; I've been following your illness for years now.
Posted by tickled1 (Member # 14257) on :
Does Protomyxoa come from a tick?
Posted by manybites (Member # 33750) on :
Dr Fry found it in mousquitos as well.
Posted by METALLlC BLUE (Member # 6628) on :
A quick response. I'm at 1mg everyday, and every 3rd day 2mg. The final outcome is to reach 3mg, but the problem with my case is this infection has had a lifetime to build up biofilm and to establish itself, so the doctor told me to not expect a quick recovery.
He did not recommend Dr. F's diet, although he is in close contact with Dr. F, Dr. H in NY, Dr. J in CT, and Dr. K in Washington.
He also stated that a single patient of his is using Rife and experimenting with frequencies on a coil machine outside the typical range. He has the same infection and did not respond to other therapies but now is substantially improving on a particular frequency that he has not officially released. He told me "If you ask me, I can tell you what the frequency is when it's given to me." In other words, I can't recommend it or tell you how to do it, or anything else.
So, we "might" have a possible option in the Rife field for treating this parasite "maybe."
I'll get the info to everyone the moment I get it and start experimenting.
Yes, it comes from Ticks and probably other vectors, but I personally do not know. Manybites above says Dr. F found it in pesky skeeters.
Posted by dal123 (Member # 6313) on :
Who is dr f? Plse pm me
Posted by Tonglen (Member # 18472) on :
MB, really appreciate the update and hope you feel better soon! Curious, since you tested positive for lyme and bartonella as well, do those get treated after FL 1953 or will you fold in additional treatments?
Posted by Tammy N. (Member # 26835) on :
MB, care to give us an update when you have a moment?
Wondering how you're making out.
Wishing you well!
Posted by Tammy N. (Member # 26835) on :
Up:)
Posted by Haley (Member # 22008) on :
I'm wondering myself. Where are you MB?
Posted by METALLlC BLUE (Member # 6628) on :
I haven't responded or been on Lymenet because I don't have any positive news to report.
The only information I have is that the doctor began with Ivermectin, the results were disappointing combined with Artemisinin Essentials. The AE definitely woke up a parasite of some kind (Probably Babesia). I went from no night sweats to full blown night sweats and then it vanished after a few days. We then tried Alina combined with the AE and the Alina then caused the same pattern. Night and day sweats, except the sweats didn't go away after a week like the AE. The Alina caused them to worsen and then my heart started hurting during workouts. Then it got worse and I started getting exercise induced fatigue. You all are familiar with it. When you move around too much or push, you feel like you're going to pass out and die? That's the exercise induced fatigue.
Also, breathing became more difficult, like the sweats, fatigue and heart/chest pain. My doctor suspects we're ****ing off the Babesia, which I've treated extensively. When I say extensive, I mean years and years of anti-babesia therapy. Nothing seems to really end this infection, it just gets suppressed, or at least the symptoms do somewhat. My doctor doesn't feel distressed about options like my other doctors did. Perhaps that is because my current doctor is up to date on the cutting edge data and willing to experiment with my consent. We're doing whatever it takes to try to make a dent.
So that is where I am. I wish I had better news.
Posted by nonna05 (Member # 33557) on :
I'm sorry to read you didn't get further along yet.. You mentioned before that you were at 45-50%.
Is that still the case?
You mentioned exercise like it's something you do often,, Does that also mean you get out and about OK?
I ask because I am not able to push through to do much at all and 50% would be a God send right now.. I of course am shooting for 100%.. So maybe , compared to some I'm at 40% (sure doesn't feel like it , sitting,laying in my room 90% of the time) and you're at 70%........ The symptom's and marker's to this illness are so crazy.......
So hitting the Parasites didn't do much... Since you look into so many combo's have you tried GSE with anything??
Was the Bactrim incident a Herx or Allergy reation... I ask because After being on rifampin a long time and trying it again,,I got a reaction,
So they said allergic,
This didn't feel right so I tried it back at my original dose and my original manufacturer.. Didn't have a proplem...Thay just say I'm past that now..on to other treatment's
Take care..
This new LLMD ,,what's his plan>??
Posted by sixgoofykids (Member # 11141) on :
Hey, MB, thanks for popping in, sorry you're not doing better.
When I used photons to hit the Lyme, afterward the babesia did flare up. I took something (tonic water with natural quinine in it) to help with the symptoms, but I believe it was the strength of my own immune system that finally got the babesia.
It did flare badly right before it let go. It's like it had one last hurrah.
I HOPE this is what you're experiencing. EVERY SYMPTOM with EVERY INFECTION or even stuff I didn't know about flared as I retraced/healed.
Since you used photons and it's babesia that's flaring, I can't help but wonder if it's a similar phenomenon. Keep working on getting your BODY stronger.
I hope something works soon!
Posted by tickled1 (Member # 14257) on :
So sorry to hear that you haven't made more progress. Hopefully what Six said is true and this is just a last hurrah.
Posted by tickled1 (Member # 14257) on :
METALLIC, you mailbox is full.
Posted by METALLlC BLUE (Member # 6628) on :
Alright, more news for everyone:
I've continued the same protocol since you last heard from me, except we added Beyond Balance CLAK Detox, and Beyond Balance MCBABS2, both of which are drops that I take 20 each x 3 per day.
I've learned a few tricks that may work for other patients since then.
The biggest one: Ultrama (Tramadol) when mixed with certain drugs appears to enhance their ability to work, or it itself enhances sleep quality. I suspect it's synergistic effect comes from a combination of Ativan @ 2mg with 50mg of Ultram(Tramadol) The difference between sleep quality was night and day. I'm now getting much more restful sleep, while before, Ambien, Ativan, Melatonin, stopped working - and even still the quality wasn't good as most of you recall from this thread. It "helped" but barely. Added the:
Marijuana significantly improved the combination (smoked), about 5-8 tokes from a pipe. It also took away pain, decreased nausea, alleviated depression and improved sleep quality. In an attempt to try to find something safer for my lungs, I tried (completely by chance) the Ultram. Clearly pot won't work for everyone and can cause the same paradoxical effects as other drugs/or not work at all/or has side effects that are unpleasant and can happen even in healthy people i.e. (paranoia, respiratory issues, anxiety, etc)
My function increased from 35-40 up to 50% on better days. This is almost near where I was in 2005 thanks to IV Vancomycin. I believe the combination of symptomatic treatment is primarily holding symptoms at bay. Sleep makes a big difference in terms of immune function, so my immune system is far more relaxed during the day up until about 6-9 p.m. when the symptoms return gradually until they become crippling, causing pain, headaches, severe neurological/psychiatric changes. I absolutely must go to bed no later than 12, but 9-10 is optimal still.
Additional news, and this applies to everyone who does treatment daily without breaks and feels a little better but never quite seems to get passed the hump.
Breaks! Take breaks, such as 1 week on, 1 week off, or something that your body responds to. If you've been treating for awhile you shouldn't get sick immediately, but if you do, it's because you're not far enough long in treatment to take breaks. Of course you should always slow down the dose or stop for a day or even a week if you have Herxheimer reactions that threaten to send you to the ER. The ER is unnecessary when a Herxheimer reaction is the cause. Don't "push" through it when it gets severe, just stop. But of course, speak to your doctor about this. Beware that many doctors say "not" to do this - and to simply push through. I disagree, and you know your body - so you decide whether the ER trip is worth it verse just a few days off.
Since I started taking breaks my behavior has changed greatly. I am more stable, not as moody. However towards the end of the week after being on AE, Alina, and the Beyond Balance Drops, I get ****y, achey, sweats at night, and other typical herxheimer like symptoms. They last usually from Thursday until the following week on Tuesday/Wednesay (my off week). So even half of my off week is consumed with recovery, which is frustrating if you're trying to have a life. I'm considering asking my doctor to give me even more breaks between treatments so I can live and not cause my personal relationships to explode - which they do, thanks to the isolation, irritability and other "mean" attitudes I get when a Herxheimer hits.
Summing it all up: So these are the basics: Pulse treatment, Ultrama/Tramadol induces high quality sleep in conjunction with Ativan or probably any Benzo (I'm presuming, but not positive), and avoid ER trips caused by Herxheimer reactions at all cost. You know your body, don't get into the danger zone or try to push through.
I also had hammered my Babesia and Bartonella previously with very long durations, so the Rife didn't really hit them much either. My big problem seems to be tied to that protomyxoa rheumatica that Dr. Fry discovered. We continue to treat it, but it's had 25-30 years to form biofilms, so breaking them down will probably take another 5-15 years, and if I go at high dose I become severely suicidal, physically disabled and close to going to the ER, so we can't go after it hard. The Herxheimer is too strong.
If anyone has questions about this post or anything else, you may also contact me there. I don't come to Lymenet often except for educational resources. There isn't much left to learn so I'm on facebook most of the time with my other Lyme pals. Love all you guys for all the support and information you've shared with me over the years.
Take care all, Michael
** Marketing parts removed **
[ 12-10-2012, 04:04 PM: Message edited by: sixgoofykids ]
Posted by faithful777 (Member # 22872) on :
Glad those specific drugs worked for you. The rife machine could help you if you relapse and they are good for other illnesses. I wouldn't part with mine.
Tramadol or Ultram does not give the same results for everyone as it did for you. I am glad it solved a problem for you.
For me and others I know, insomnia was a side effect of that drug. Also, even though it is a synthetic narcotic, it can be addicting.
Be careful when you want to get off and titrate down the dose slowly. No one likes those creepy crawly feelings of drug withdrawal.
Posted by map1131 (Member # 2022) on :
MB, so good to read you're seeing improvement.
I too suggest you keep that rife machine. You never know when it could come in handy down the road. I use my for colds, flu, uti, detox the little things that come up in health tx.
Pam
Posted by METALLlC BLUE (Member # 6628) on :
Update: Ultram wore off after one month of use, back to not sleeping well. Marijauna still helps with falling asleep but the quality is not sufficient for proper function.
Alinia did not change the outcome of my symptoms. Artimisinin Essentials, like Alinia caused die off, but again never resulted in changes in symptoms.
I'm back to where I started, 35-50% function, with my baseline around 35% mostly.
We're re-running almost every single test all at once, and I have a sleep study coming up. We're now considering, for the first time in years, using IV antibiotics.
Personally I think it was a very bad decision for my LLMD's early on to not begin with IV, as it ended up being the only thing that really helped a lot in a short period of time. IV Vancomycin.
We tried Cucumin for symptom relief, etc, we tried GABA pharmaceutical grade, and Glutamine for digetive issues - nothing improved the symptoms.
After 30 treatments with the Coil and about 100 treatments with the Plasam Rife Labs machine, no results were seen. Reactions to treatment and all frequencies resulted in no progress.
As far as everything else, the Ativan is no longer effective and I'm lowering the dose gradually without too much suffering.
Sorry I don't have better news.
Posted by Tammy N. (Member # 26835) on :
MB -- so sorry to hear this news.
You are so smart and dedicated....which leads me to believe that one day you will conquer. My sincere hope is that it will be in the near future.
Sending the best of thoughts your way.
Posted by Jane2904 (Member # 15917) on :
Metallic,
So sorry to hear the updated news.
I second what Tammy wrote.
If you do go the IV route, I hope it brings you to recovery.
My best to you.
Posted by annxyzz (Member # 20404) on :
Just a thought, but I am trying sovereign silver (nano colloidal) and having a monster herx . I can only toolerate 1/2 tsp with my herbs ( I rotate them) and have been on it a month. I can not prove it , but my instincts lean toard believeing that nano silver can kill almost anything . I read posts at different boards that indicated people with coinfections got their lives back to a more normal state , like 8man12 , who is a member here .
The effect of silver shocked me by the third day . I am going to continue and then add enzymes for biofilm - like serra peptase . I tried it and it was also extremely potent . It works and was almost scary for me. I will slowly add it again when I get stronger .
I wish you the best !
Posted by tickled1 (Member # 14257) on :
Blue,
I'm not sure if I've asked you this before but have you ever been screened for H. Pylori? With all your GI issues and the fact that Vanco has worked for you in the past I think it could be a factor.
It is for me and I've been doing some reading on how bad it can really mess someone up. It can cause neuro issues amongst many other things.
After all the abx I've done I hadn't done Flagyl till last fall (for something non Lyme related) and it is the first time I felt normal in years. The effect has slowly worn off though but I only took it for 10 days and plan to take it again.
Posted by oxygenbabe (Member # 5831) on :
Metallic--what about HCL to disrupt biofilms?
Posted by glm1111 (Member # 16556) on :
MB,
Have you considered the full Dr. K. antiparasitic protocol and then doing antiparasitic herbs and salt/c in between? Just thinking you might have the Filarial worm co-infection that needs aggressive therapy.
Gael
Posted by jupiter76 (Member # 37697) on :
I want to ad that the girl in the video above also took alinia during this three months together with cholestyrammine.
Posted by sparkle7 (Member # 10397) on :
All the best to you MB. We all deserve better than to go through dealing with this rotten illness - whatever it may be.
Sometimes, you have to take a rest from trying to fight it & just try to do the best to maintain yourself. I hope something will come along to heal all of us who are suffering.
Posted by adamoo (Member # 43659) on :
MB wrote: "After 30 treatments with the Coil and about 100 treatments with the Plasam Rife Labs machine, no results were seen. Reactions to treatment and all frequencies resulted in no progress."
Could you tell something more about this? How long 30 treatments with Coil last? Did you have reactions after coiling sessions?
Posted by Nula (Member # 38409) on :
Metallic Blue, are you still around? If so, how are you?
Posted by bluelyme (Member # 47170) on :
Did you try emailing him?...im curious too, mb had resolve dicipline and organization one could tell from his writings...i had stumbled upon this thread ..i may have to try new things as bvt is getting harder..has any one come up with a frequency for proto?
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