Treatment Of Post-lyme Disease Syndrome

[calypso]

For those who have tested positive for Lyme well after the fact and have symptoms ... see link below:

http://www.journals.uchicago.edu/CID/journ...4918677970Guest

Amy

[Dizzy Dame]

Hi Calypso,

I couldn't acess the article. However, I wouldn't trust any one source about anything with regards to lyme disease. There are so many conflicting studies...

When HIV and AIDS first became a major problem, similar things happened within the medical comminity. For the first few decades no one had a clue what was really going on, but over time, people began to learn more and now we understand HIV and AIDS fairly well.

I feel the same is true with Lyme disease, but we are still in that early, chaotic phase. Every year researchers are learning more about new strains of lyme and other pathogens that can mimic lyme. Hopefully within the next decade or two, doctors and lawmakers will have a clearer view of how lyme disease works, but I'm positive we're not there yet, or even close.

My personal belief is that if a person has tested positive for Lyme, is treated, and still has symptoms; or tests postive for lyme many years after the fact, there isn't much harm in trying antibiotics. Syphilus can live in the body for years, and can survive treatment--it seems if one pathogen can do it, why not others?

[Lukkychrm42]

I was under the assumption that Lyme disease was basically chronic, and that the bacteria generally stay in the body, so ongoing treatment or at least intermittent treatment over time is necessary. So therefore, while it might cause other issues as well, what remains in the body is still Lyme disease, not merely a side or after effect.

Hmm.

[DancingLight]

I can't access the article either...Is it possible for you to cut and paste it??? I'd like to respond, but would like to see the article!

Thanks!

Em

[MomtoGiuliana]

Thanks for the link Amy. If her link doesn't work try

http://www.journals.uchicago.edu/CID/journ...0897/40897.html

I would recommend reading the entire article b/c it is long, and complex. Since some of us have been diagnosed with suspected Lyme as an explanation of symtoms, this article seems relevant to our board.

I copied the relevant passage that Amy refers to, below, if that is ok and does not violate copyright.

The reference is: Clinical Infectious Diseases 2006;43:000

Post?Lyme Disease Syndromes

There is no well-accepted definition of post?Lyme disease syndrome. This has contributed to confusion and controversy and to a lack of firm data on its incidence, prevalence, and pathogenesis. In an attempt to provide a framework for future research on this subject and to reduce diagnostic ambiguity in study populations, a definition for post?Lyme disease syndrome is proposed in these guidelines. Whatever definition is eventually adopted, having once had objective evidence of B. burgdorferi infection must be a condition sine qua non. Furthermore, when laboratory testing is done to support the original diagnosis of Lyme disease, it is essential that it be performed by well-qualified and reputable laboratories that use recommended and appropriately validated testing methods and interpretive criteria. Unvalidated test methods (such as urine antigen tests or blood microscopy for Borrelia species) should not be used.

There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (6 months) subjective symptoms after recommended treatment regimens for Lyme disease (E-I).

Therapeutic modalities not recommended. Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see table 4) (E-III).

[pamyla]

Hi all, There is a lot of controversy in the lyme community and there are basically 2 sets of treatment guidelines that have emerged. One is what has previously been posted - the IDSA (infectious disease society of america) as they just published updated guidelines.

This article here will give a good synopsis of how the guidelines were updated -

http://www.docguide.com/news/content.nsf/n...52571FB00569D15

The other set of guidelines is given by ILADS (the International Lyme and Associated Diseases Society) - www.ilads.org.

Treatment guidelines can be found here - http://www.ilads.org/guidelines.html

Most of us with chronic lyme who are undergoing treatment are seeing a doctor who follows the ILADS guidelines, as the IDSA doctors do not advocate long-term antibiotics.

I think this article does a good job of explaining how there are 2 sides -

http://www.ilads.org/insurance.html

I think it is important that patients be aware of both schools of thought so they can make an informed decision. There is research supporting both, and the guidelines are very different with regards to treatment. We definitely need more research....

Pam

[MomtoGiuliana]

I realize that everyone will form their own opinions on this topic.

Dr. Joseph Burrascano is the author of the ILADS guidelines (it appears). Based on concerns with his treatment of Lyme disease, Burrascano's license to practice medicine in the state of New York is, or was, on probation. Not sure of the status now. In addition, he has no articles on this topic published in peer-reviewed medical journals.

Katherine

[pamyla]

Katherine, I think you're looking at the wrong thing. Sorry, I should have posted a more direct link - I realize now the link was on the right side of that page. Dr. Burrascano was one of many authors.

http://www.guideline.gov/summary/summary.a...amp;string=lyme

Deciding about treatment can definitely be challenging. Until more research is done it's up to patients to be informed. (hey, sounds like POTS doesn't it )

[Guest malosp]

Everyone,

Lyme is so controversial for sure. Everyone has to decide for themselves.

The only proof I need though is that now...my POTS symptoms are almost gone. no dizziness, no more fast heart rates, no insomnia. I choose the antibiotic route and it is working for me. I would take antibiotics any day over the way I felt, hands down. I work in the medical field and I was one of the biggest disbelievers in lyme there was. Maybe it is a lyme like illness, I just know I am responding to antibiotics.

Dr. Joseph Burrascano is not suspended and he was cleared of all charges. Many other doctors not just lyme doctors also get investigated. I like to think of him as a pioneer in his field. Just like it was finally discovered that H. pylori (which is a bacteria) not stress caused stomach and peptic ulcers, I know someday it will be acknowledged that lyme can continue to live in the body causing havoc just like syphlis.

Take care everyone.