METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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).
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Why not look into trying Tigecyl? I feel that made the most difference. Only did 4 months, had to stop due to blood clot
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
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,
posted
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.
Posts: 323 | From Michigan | Registered: Sep 2006
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
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
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
posted
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%.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
posted
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.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
massman
Unregistered
posted
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.
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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)
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
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.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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
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.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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.
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
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
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
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%
Posts: 69 | From fort collins, co | Registered: Dec 2007
| IP: Logged |
posted
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.
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
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 ]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
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?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
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
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
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.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
massman
Unregistered
posted
How can you tell that you detox fine ?
And how about a LLND that may look at the problems differently than a LLMD ?
IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
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
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
posted
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.htmlPosts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
bettyg
Unregistered
posted
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...
IP: Logged |
posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
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
Posts: 1155 | From Southeast | Registered: Oct 2005
| IP: Logged |
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
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
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.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
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.
Posts: 261 | From Piedmont | Registered: May 2008
| IP: Logged |
WildCondor
Unregistered
posted
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.
IP: Logged |
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.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
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 .
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
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
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
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.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
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
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
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.
Posts: 564 | From Tick Hell | Registered: Oct 2008
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
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...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
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
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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.
IP: Logged |
posted
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.
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
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).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic