Something weird about IDSA guidelines

I know it is well-known by people on this forum that the IDSA's guidelines for the treatment of Lyme disease are in no way reflective of reality and lead to unnecessary pain and suffering for thousands of people. But I didn't realize some important ways in which the IDSA guidelines differ from those of other countries, and those for other diseases.

Out of curiosity, I looked up the UK's mainstream Lyme treatment guidelines (https://www.nice.org.uk/guidance/ng95/chapter/Recommendations#management) and noticed some subtle, but important differences:
- Nowhere is a course of antibiotics shorter than 21 days recommended (except for azithromycin, which lasts much longer in the bloodstream, at 17 days)
- Dosage recommendations for amoxicillin are higher
- In the case of persisting symptoms, physicians are directed to consider the possibility of treatment failure and treat with a second course of antibiotics using a different front-line agent
- It does not encourage further antibiotic treatment by GP's after two courses, but says "referral to a specialist" may be required

And then, looking at the CDC guidelines for treating syphilis (https://www.cdc.gov/std/tg2015/syphilis.htm), you see that doctors are supposed to follow up with patients extensively and evaluate for signs of treatment failure, retreating as necessary.

In both cases, the guidelines use neutral-sounding language and acknowledge that the standard treatments are not infallible. This makes the snide language in the IDSA guidelines about "chronic" disease seem even stranger, and the absolute certainty the IDSA appears to have about the eradication of Lyme with a single course of antibiotics, and the "do nothing" approach to continued symptoms seem even more out of line.

I'm not sure what's going on at the IDSA, but their guidelines seem out of step with science, common sense, and any reasonable standard for patient care.

Post Edited (1yrinVA) : 8/25/2018 3:24:52 PM (GMT-6)

That is interesting....thank you for posting! Worth bringing up to IDSA drs.

1yrinVA said...
Girlie - IDSA recommends 10-21 days of Doxycycline or 14-21 days of Amoxicillin for early Lyme. I find it hard to believe they really have such confidence that 10 days of Doxy or 14 days of Amoxicillin are foolproof for this disease.

Do they explain what they mean by "early Lyme?" What do they recommend for Lyme that is not "early?"

I believe IDSA considers early Lyme to be both "early localized" (bullseye rash) and early disseminated (the first few weeks-months of untreated infection), treating both more or less the same unless there is neurological involvement.

For late Lyme they either recommend 28 days of oral antibiotics for Lyme arthritis, or IV ceftriaxone for 2-4 weeks if there is neurological involvement.

So really they don't functionally treat late disease much different than early at all.

Unless you actually find an embedded tick or see a bullseye rash, it seems near impossible for either the patient or the doctor to correctly diagnose the infections in the "early" stage.

I never saw a tick or a bullseye rash. My first symptoms were a host of neurological symptoms, not "the flu." Furthermore, I suspect I at least had bartonella and possibly babesia since birth or early childhood and that my immune system kept it in check. I think the onset of my symptoms were due to immune dysregulation and not acute onset of infection. From being around this forum for a year, I get the sense there are many others with scenarios similar to mine.

Until the medical "authorities" acknowledge and accurately describe the presentations of cases such as mine, it seems that a fair portion of folks will continue to develop chronic or late, disseminated infections.

If they ever get accurate testing in place, it would be beneficial to have babies screened at birth for vector bourne infections and also for genetic susceptibility to borrelia.

Post Edited (WalkingbyFaith) : 8/26/2018 8:51:20 AM (GMT-6)