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by PragmaticPulp 2386 days ago
> I don't think it's possible to make an absolute statement like this with 100% certainty

100% certainty is an impossibly high bar in any hard science

This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities. Many of these patients might very well have entirely treatable yet unrelated disorders, but their fixation on the chronic lyme infection theories keeps them focused on the wrong treatments. Many doctors have tried endless treatments with high-dose antibiotics, but the clinical studies consistently show no difference vs. placebo. We all need to move on from the chronic lyme infection theory unless/until someone provides real evidence to the contrary.

> There are patients who test positive under CDC criteria, take antibiotics, and never see a transition from IgM to IgG.

That was me. I tested positive under the CDC criteria, but followup IgG tests were negative. I lucked into a very astute infectious disease specialist who was as up-to-date on the research as I could have hoped for, and she even took the time to walk me through the various theories and studies.

3 comments

> This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities.

The chronic lyme people (e.g. ILADS) are often making recommendations that aren't based on solid evidence, but the reason they exist in the first place is because the CDC recommendations are also bullshit and the CDC isn't doing nearly enough to stem the epidemic.

There only have been a couple antibiotic studies, it's hard to get funding for more elaborate studies because of the controversy. Those studies ignore the research on biofilms and only gave antibiotics for a couple weeks. And even in those flawed studies there was a marked improvement in quality of life for Lyme patients.

Let's take the PLEASE[0] study for example. Although significant improvement in health was measured (on average 4.6 points on the SF-36 scale; 3 points is considered significant progress) the results were presented with the headline: 'Long-term use of antibiotics does not benefit long-term complaints of Lyme'.

While tens of thousands of patients have been cured by a cocktail of antibiotics taken for several months or sometimes years. This is also what the current in vitro research is showing. Lyme persisters can only be killed by a combination of antibiotics.[1] Like tuberculosis. And it's also what this data analysis of 200 patients shows.[2]

>We collected data from an online survey of 200 of our patients, which evaluated the efficacy of dapsone (diaminodiphenyl sulfone, ie, DDS) combined with other antibiotics and agents that disrupt biofilms for the treatment of chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS). ... Conclusion DDS CT decreased eight major Lyme symptoms severity and improved treatment outcomes among patients with chronic Lyme disease/PTLDS and associated coinfections.

And recently we have the spectacular results of Disulfiram.[3] A clinical trial is underway at Colombia University so we won't have offical results until 2021 but all signs point to it being a gamechanger. Lyme communities are full of people with miracle stories after taking Disulfiram.

[0]https://www.nejm.org/doi/full/10.1056/NEJMoa1505425

[1]https://www.jhsph.edu/news/news-releases/2019/three-antibiot...

[2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/

[3] https://www.ncbi.nlm.nih.gov/pubmed/31151194

Did you continue to rest positive for IgM? Did you eventually identify an actual cause?