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
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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
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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
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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: 2924 | From Minnesota | Registered: Aug 2006
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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
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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
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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.
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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
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METALLlC BLUE
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Member # 6628
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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
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AZURE WISH
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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
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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.
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METALLlC BLUE
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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
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D Bergy
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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: 2924 | From Minnesota | Registered: Aug 2006
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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
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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
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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
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Hoosiers51
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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
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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
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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
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springshowers
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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
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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
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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
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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 ?
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tick battler
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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
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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
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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...
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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
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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
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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
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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
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
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
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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
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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.
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