LymeScience website collates information which is sceptical of some "alternative" Lyme tests and the like

https://lymescience.org/

It looks to me like it was probably partly or fully put together by Dr David Patrick, a Canadian Infectious Disease physician and epidemiologist who has published some research on ME/CFS
https://me-pedia.org/wiki/David_Patrick

 

I’ve been on there before but can’t remember what I thought about it. That graphic seems absolutely plausible.

@Dolphin what your impression of the ME/CFS work?

 

It's hard to assess whether Lyme is over or under diagnosed as there is no accurate testing. Everything is pretty much a guess. Without accurate, valid and verifiable data it's all just thinking and words.

 

Yeah @Joan Crawford.
my impression as someone who considers that I may have it and have met people with (mainstream medicine)
verified late diagnosis and extreme complications, I think mainstream medicine massively under diagnoses Lyme and Co-Infections.

But this leaves the gates open, for those unscrupulous actors to move in and build their own businesses. I have been informed by a medical doctor who refers their patients to lots of more alternative clinics (they are on board with a lot of it) that I would be given a positive diagnosis on the alternative test and be charged 2-3 grand minimum to be given intravenous antibiotics. That many of her patients had asked to be referred there and as far as she could tell were not recovering.


So I think the answer is both, mainstream seems to view people thinking that they could have Lyme as a possibility as ridiculous, and point to the private racket as evidence of this. Rather than evidence of how they’ve driven people to it with their insistence that so many people with physical symptoms only have them for psychological reasons. The sort of dustbin diagnosis where you don’t ever get any better and by the time you get much worse it’s already too late.

 

I agree that it is likely under diagnosed. Hard to prove though without clear, objective evidence of ongoing infection.

Treatment with multiple antimicrobials (mainly antibiotics) from 2005 is what got me back on my feet from severe ME symptoms.

To add to the mix, I have underlying immune deficiencies which makes it harder for me to clear bacterial, fungal and parasite infections. I do, thankfully, respond to vaccines and antimicrobials.

Hard to decifer which is chicken and egg here as essentially the areas of immune deficits I have are those needed to clear borrelia. So, do I have ongoing infection (I think it is still there as I deteriorate off antibiotics) (infected with tick borne disease (aged 11)) because of immune deficiency or are my immune deficits damage due to infection/untreated infection for 20 years? As we have no data pre 11 years of age it's unanswerable.

I don't really get the rationale for IV antibiotics tbh. I see patients who persist long term generally improve. There is I think no rationale for trying to rush treatment. I tried at times and it backfired with too overwhelming side effects and intolerable level of symptoms. As borrelia divides so slowly and I keep hearing (unsure if this is myth or accurate) that many antimicrobials are effective in their 'killing' work during reproduction/division in the life cycle so a slow plod of treatment would make more sense to me. And that is what I see working (for those that supposedly do have Lyme and who have the resources to persist in treatment).

As an aside, I follow up patients with Lyme and ME type symptoms. In longer term (3 years plus) of slow, persistent oral antimicrobials some do get better. They tend to be patients with clearer history of tick bites, social and financial support to continue with long term treatment and have the resilience to persist when the treatment can get rough. Many people drop out. This may be because it's not for them, decide it does not fit their symptoms etc or they are not supported enough in maintaining treatment which in my experience was extremely tough going. Uncertainty and disbelief from family, medics etc stops many people persisting too.

So many unknowns. Minimal science input to investigate.

Sadly, unlikely to be assessed effectively in any RCT as timescales are so long. It can take years of treatment for benefits to be clear and consistent. Need to be objectively measured too. My pre and post functioning across physical and cognitive is very large indeed. I went from bedbound taking 3 months to write a three paragraph letter, to completing several masters degrees and a doctorate and now working FT