Lost in the sound and the fury of the clashes between the conventionals and alternatives here on Lymenet are any data of the relative efffectiveness of the treatment modalites. I see it argued continueously that long Term IV ABX only achieve remission. Is this the position of ILADS or the LDA? Are there any full recoveries among the tens of thousands treated with IV ABX? Does anyone know what percentage, if any, that amounts to? I think it very likely that most people who were treated sucessfully by longterm IV ABX are conventionally biased, and might not report their success to this board, if they were ever on it. On the flip side of the coin, as far as I can see, only GiGi and maybe a few others claim to be cured by the addition of alternative treatments. I am talking "cures and remission" here, not the much more openended topic of "what has helped". As with so many other things in life, the joy is in the headbanging, and I wouldn't want to dimish that pleasure for anyone. Still, I am odd enough to be curious about the facts.
Posted by charlie (Member # 25) on :
Actually, despite being nearly bedridden, I have achieved a years long near complete remission using self administered oral abx.
Ok I need a tune up a few times a year and my knees and elbows are permanently ugly enough to keep me out of the mr universe contest but everything else is OK and I did NO alternative stuff unless you consider artemisinin alt. which I don't.
Charlie
Posted by wrotek (Member # 5354) on :
Doctors cure Lyme, but very few ^^. And ofter they get persecuted for this.
Posted by ByronSBell 2007 (Member # 11496) on :
I say we all get in one big hot sauna for 24hours and fry the bugs to death.
Posted by tailz (Member # 10014) on :
We need to turn off all this electromagnetic chaos, and then our bodies will get the right 'signals' to heal.
We can keep searching for a chemical - we can have some success trying to manually operate our own immune systems - but neither of these methods of cure are logical, nor will they ever bring us lasting relief.
Posted by helen65 (Member # 2962) on :
Greatcod, have you not been told that Lyme is incurable? Just wondering, Helen
Posted by tanzi2u (Member # 9237) on :
Not trying to offend any PETA people, but this study gives me hope:
Antibiotic treatment of experimentally Borrelia burgdorferi-infected ponies
Abstract
The objective of this study is to determine whether doxycycline, ceftiofur or tetracycline could be effectively used to treat equine Lyme disease.
Ponies experimentally infected with Borrelia burgdorferi by tick exposure were treated with doxycycline, ceftiofur or tetracycline for 4 weeks (28 days).
Doxycyline and ceftiofur treatment were inconsistent in eliminating persistent infection in this experimental model.
However, tetracycline treatment seems to eliminate persistent infection.
Although serum antibody levels to B. burgdorferi in all ponies declined gradually after antibiotic treatment, three out of four ponies treated with doxycline and two out of four ponies treated with ceftiofur, serum KELA titers were raised again 3 month after treatment was discontinued.
Five months after antibiotic treatment, tissues aseptically collected at necropsy from ponies with increased antibody levels after antibiotic treatment also showed culture positive to B. burgdorferi in various post-mortem tissues.
However, all four-tetracycline treatment ponies showed a negative antibody level and culture negative from post-mortem tissues.
Untreated infected ponies maintained high KELA titers throughout the study and were tissue culture positive.
Posted by Greatcod (Member # 7002) on :
Helen, I've never been told that Lyme is incurable, nor do I know that ILADS or the LDA take that position...just don't know. Tenzi2u --And the tetra has worked reasonably well for me, but I always relapse.So...
Posted by KS (Member # 12549) on :
I have personally spoken to 3 people with chronic lyme (one woman undiagnosed for 20 years and near death when diagnosed) who truly believe they are cured. One has been symptom free for 15 years, another for 12 years and the third for 3 years. Whether we call it permanent remission or cure, I truly believe this is something we can all hope for. Each of these 3 people were treated for TBI very differently but obviously got the right recipe for their personal infections. I too wish there was more data available......
Posted by Itsy_bitsyone (Member # 12635) on :
In my area there is an Amish lady (she won't be posting, obviously) who has been "cured" by her own admission for several years following doxy then shumaker protocol.
Not sure how I feel about that protocol, however, this woman has gone on to be healthy, have healthy babies, and lead a normal amish life...which, is a much harder life out here than what we live.
Me, I'm on tertracycline. Glad to hear it works in horses, but unfortunately, I'm not a horse. Having two horses myself, I know a lot of the meds they take are the same as what we take for similar health issues, but I am not so sure how close our body chemistries are.
Posted by Truthfinder (Member # 8512) on :
Greatcod, until Lyme is finally 'dragged out of the closet' and given the attention it warrants, I don't think we will ever have any numbers or percentages for any 'cures', do you?
I'm afraid we still have to rely on 'anecdotal evidence'. It's all we have. And if proper records are kept by practitioners (and many LLMDs are very diligent about this), it can be very helpful in getting a general picture of what works and what doesn't, how long, etc.
Tracy
Posted by savebabe (Member # 9847) on :
I am starting to believe there is no cure, but only remissions. Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by savebabe: I am starting to believe there is no cure, but only remissions.
Yes, hopefully though we can get the remissions to last a really long time. I remain oddly optimistic too that biomedical research will eventually come up with better treatments.
Posted by Michelle M (Member # 7200) on :
I suppose the IDSA would have us believe the horses are lying.
Michelle
Posted by elley0531 (Member # 9434) on :
quote:Originally posted by savebabe: I am starting to believe there is no cure, but only remissions.
I wish i could say this isn't the case, but at this point I feel like it maye be true for some people. I don't think I will ever be able to completely be well.
My relapse last summer (after not having Lyme for 17 years) was so drastic, it left lesions on my brain. Def not MS lesions. They weren't even there several months prior (I had an MRI done in April 2006 for headaches and it came back clean, then I relapsed badly after wisdom teeth removal in May 2006 and got a secodn MRI done in Nov 2006-lyme lesions present).
Posted by clairenotes (Member # 10392) on :
I don't think lesions are necessarily permanent.
Claire
Posted by Aniek (Member # 5374) on :
You won't find percentages, because there is a lack of research in the area. The only studies looking at long-term abx used 3 months of IV antibiotics. So is that really long enough to judge?
The one that is published of the 2 (last I heard the second is published yet) has many faults to it. They used patients who already had treatment failures, and the treatment was doxy part of the time and Rocephin the other part. The paper then treated the results as if they applied to all long term use of antibiotics for Lyme.
There is even less research around the alternative treatments.
Honestly, people's testimonials on this board are the best you have. My personal belief is you need antibiotics to kill a bacteria, but you also need to use some alternative treatments to strengthen your system.
It's possible some of the herbs are strong enough antibiotics. I know I've had great yeast control with Cumanda.
Posted by elley0531 (Member # 9434) on :
quote:Originally posted by clairenotes: I don't think lesions are necessarily permanent.
Claire
I don't think they nec. are either. My doc said its possible they will heal. They weren't severe lesions. He has me on supps for it. So I hope for the best. I will have another MRI in about 3 months.
Posted by 5dana8 (Member # 7935) on :
Originally posted by savebabe: "I am starting to believe there is no cure, but only remissions."
I agree with savebabe but in a positive way. Remissions can feel a whole lot like a cure sometimes
Just have to be on the lookout for any return of symptoms
in 21 years with lyme & co-infections abx has brought my life back many times.
Not 100% evrey time, but to the point where I can enjoy life.
I now do rife and supps now only & feel it's helping alot.
IMPO There has been many different ways to bring about remission. For me it's not been by abx alone but in combination with alternative treatments as well. There's no black & white to this disease.
Posted by elley0531 (Member # 9434) on :
quote:Originally posted by 5dana8: Originally posted by savebabe: "I am starting to believe there is no cure, but only remissions."
remissions can feel a whole lot like a cure sometimes Just have to be on the lookout for any return of symptoms
yup! Mine is under control. I still have some minor symptoms, but compared to last summer-wow-what a difference!
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