Im being evangelized at about lyme treatmentd agsin and its getting under my skin

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So, back to good old uncertainty.

Scheduled to do some major treatments to halt and reverse myndecline , that I researched and my doctors who are experts think are necessary. But now I wonder if I have it all wrong and just have Lyme. It's impossibleto rresearch everything at once
 

duncan

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There are currently three FDA-approved Lyme diagnostics: ELISA, Western Blot, and C6 (which is a sort of ELISA on steroids.lol)

Then you have to factor in the algorithm for determining the threshold for positivity. that was decided almost 30 years ago in Dearborn Michigan, and the tailspinning began shortly thereafter...

Elisa refers to a type of pcr test used for many otherthings, and western blot is similarly general, but a western blot and elisa for lyme is a standardizedthing with the CDC, whatever bands they use for both I trust,
ELISA, as it's employed to Lyme,, looks for antibody levels. PCR, as it's employed for Lyme, looks for the anitgen or spirochete itself - or at least its DNA.

What do you mean by that, and how do you know I haven't looked into it? I looked into igenex and even the most chronic lyme believing researchers like Fallon, think its bunk and they show their work pretty well. I believe the truth could be yetuncovered, I dont think this is a closed case, but I think no test is better than a wholly inaccurate test and the CDC tests measure something pretty well, and are better than igenex and most private labs
I cannot speak to how much research you've undertaken, but this paragraph suggests to me that perhaps you've overlooked some areas? The CDC has mischaracterized. the extent of the Lyme problem for decades. Decades. How long did they preach, hard to get, easy to cure, while simultaneously claiming only 20,000 to 30,000 cases annually in the US? Now it's widely acknowledged that annual Lyme cases exceed 400,000. That is exponentially different.

Vaccine and diagnostics are two important pivot points in Lyme world, and you may wish to parse down there in your continuing research efforts. It's hard, though. It may not be worth the effort; it seldom is for me anymore. The concentration it takes exacts too great a toll on me.
 
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So, back to good old uncertainty.

Scheduled to do some major treatments to halt and reverse myndecline , that I researched and my doctors who are experts think are necessary. But now I wonder if I have it all wrong and just have Lyme. It's impossibleto rresearch everything at once
Especially when you are severe. That's my problem too. And there are a lot quackeries out there who claim to be experts (KDM for example). So I became very careful what doctors tell me.
 
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cannot speak to how much research you've undertaken, but this paragraph suggests to me that perhaps you've overlooked some areas? The CDC has mischaracterized. the extent of the Lyme problem for decades. Decades. How long did they preach, hard to get, easy to cure, while simultaneously claiming only 20,000 to 30,000 cases annually in the US? Now it's widely acknowledged that annual Lyme cases exceed 400,000. That is exponentially different.
Again, it's not about trust in the CDC. It's about not seeing better standards or tests to replace that one.

And when health agencies bungle things, it makes me think they're not infallible, but it does not make me think that the opposite of what they say is true either.
Like what happened with covid and masks.
 
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Its an impressive study and fairly interesting, and ill have to read it more. But it's still a single study.

And even this study which is definitely the only study I've seen of its type , was only able to get modest results from s fairly extreme treatment regimen. It makes it seem like dormant Lyme , if it does exist , is an indicator of immune health or the terrain its on, rather than being important in and of itself.

Every review I've seen of rcts of antibiotics for post treatment Lyme has been negative , and I've rarely heard of Lyme doctors that weren't outright quacks. Ill have to think this over , but I'm not sure what conclusion I should draw. How do I find out if there were responses or criticisms to this article. Also , I'm wondering how this relates to the overall microbiome , inside and outside a the body
That's not a study, it's a single case report of a single patient. It's notable precisely because it doesn't match what we see in other cases, hence the write-up.

Notably, the patient's symptoms during the persistent infection were very different than CFS. She had massive problems with different organ systems that were apparent through traditional testing.

Given case studies like this, it may be possible for Lyme to persist in certain rare situations. More study is always welcome. However, I haven't seen any real evidence that these scenarios are common without the other presentations associated with Lyme disease, as this patient experienced.

It's becoming impossible to have honest conversations about Lyme online because the chronic lyme theories have evolved on multiple levels of "but what if..." reasoning, chained together with isolated experience reports and case studies like this one. The current popular version of chronic lyme requires that we assume persistent lyme infections are hiding in ways that don't appear on traditional tests, manifest with symptoms different than typical lyme infecitons, and always stay constrained to a hidden infection below the threshold of an active infection (which is different than this case study, which clearly progressed to active infection).

These case studies are always interesting and I want to see more research in the area, but I can never square them with the popular chronic-lyme-explains-everything claims online. There are too many gaps and too many assumptions.

I also tested positive for lyme under the CDC criteria. I took the antibiotics, but after several follow ups with an infectious disease specialist associated with a local research university, I never showed IgG positive. It was ruled a false positive.

@frozenborderline did you ever test IgG positive? If you were only IgM positive but it never progressed to IgG positive, I would assume a false positive.
 
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That's not a study, it's a single case report of a single patient. It's notable precisely because it doesn't match what we see in other cases, hence the write-up.

Notably, the patient's symptoms during the persistent infection were very different than CFS. She had massive problems with different organ systems that were apparent through traditional testing.

Given case studies like this, it may be possible for Lyme to persist in certain rare situations. More study is always welcome. However, I haven't seen any real evidence that these scenarios are common without the other presentations associated with Lyme disease, as this patient experienced.

It's becoming impossible to have honest conversations about Lyme online because the chronic lyme theories have evolved on multiple levels of "but what if..." reasoning, chained together with isolated experience reports and case studies like this one. The current popular version of chronic lyme requires that we assume persistent lyme infections are hiding in ways that don't appear on traditional tests, manifest with symptoms different than typical lyme infecitons, and always stay constrained to a hidden infection below the threshold of an active infection (which is different than this case study, which clearly progressed to active infection).

These case studies are always interesting and I want to see more research in the area, but I can never square them with the popular chronic-lyme-explains-everything claims online. There are too many gaps and too many assumptions.

I also tested positive for lyme under the CDC criteria. I took the antibiotics, but after several follow ups with an infectious disease specialist associated with a local research university, I never showed IgG positive. It was ruled a false positive.

@frozenborderline did you ever test IgG positive? If you were only IgM positive but it never progressed to IgG positive, I would assume a false positive.
A case report fulfilling the scientific methods is a so called „case study“ so please don’t argue about terms. We all agree that more research is needed. Additionally he said that he had the clinical symptoms.
 

duncan

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The current popular version of chronic lyme requires that we assume persistent lyme infections are hiding in ways that don't appear on traditional tests, manifest with symptoms different than typical lyme infecitons, and always stay constrained to a hidden infection below the threshold of an active infection (which is different than this case study, which clearly progressed to active infection).
"Traditional" tests are in great measure what's being contested. But what you suggest is imo inaccurate anyway - all you need do is research Lyme prior to '87 or '88 or thereabouts, and many of those studies would disagree with you. The 180 that was nimbly performed around 1990 was extraordinary. History, it turns out, is important to appreciating the Lyme debacle.

It's becoming impossible to have honest conversations about Lyme online because the chronic lyme theories have evolved on multiple levels of "but what if..." reasoning, chained together with isolated experience reports and case studies like this one.
I have these conversations in person. I've had them in person with many of the movers and shakers of Lyme policy. I must tell you, the "but what if...' .claim hasn't been a thing for years, nor need it be. Too many animal studies, too many persister studies, etc.
 

hapl808

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I did have the bullseye or ring type rash while in SE Asia. When I was finally tested for lyme (years later), I came up negative in ELISA and Western Blot, and no trace of any of those pathogens on a qPCR / NGS diagnostic test (more recently - but from a lab where I'd question their methodologies).

So therein lies a problem. I've tried antibiotics - I got quite a lot of relief the first time I tried them, but less and less after that. Is that because of SIBO (I've tested positive for that), or because of persistent lyme, or because of MMP inhibition (some non-hypermobile connective tissue problems), or who knows. With all our vaunted diagnostics, at the end of the day most of my labs look 'fine' and therefore treating from there quickly moves into fringe territory unfortunately.
 
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@frozenborderline did you ever test IgG positive? If you were only IgM positive but it never progressed to IgG positive, I would assume a false positive.
There is zero doubt that I had Lyme, an acute case. I don't know all the technical details but there was no doubt , I had the fever and rash and also tested positive , in an endemic area, not from a fancy Lyme quack or naturopath, but just from my regular, licensed pcp . no doctor I've had has doubted that I had lyme. The question was just do i still have it. I know after infection is cleared yiu can supposedly have fslse positives drom residual antibodies. But the initial infection was never in doubt .

The rest of what u said I mostly agree with but parts of the case study seem very novel AND thorough. It merits further study. That doesn't mean we need to make narrative leaps to saying everyone e who gets post Lyme symptoms has chronic infection
 
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I did have the bullseye or ring type rash while in SE Asia. When I was finally tested for lyme (years later), I came up negative in ELISA and Western Blot, and no trace of any of those pathogens on a qPCR / NGS diagnostic test (more recently - but from a lab where I'd question their methodologies).

So therein lies a problem. I've tried antibiotics - I got quite a lot of relief the first time I tried them, but less and less after that. Is that because of SIBO (I've tested positive for that), or because of persistent lyme, or because of MMP inhibition (some non-hypermobile connective tissue problems), or who knows. With all our vaunted diagnostics, at the end of the day most of my labs look 'fine' and therefore treating from there quickly moves into fringe territory unfortunately.
When its been awhile since initial infection especially and also when its false negative not false positive, that's a whole other thing. I definitely don't think the CDC tests are perfect. Just not sure there's better tests. I'm going to try some doxycyline for mmp inhibition. Its been causing headaches tho
 
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A case report fulfilling the scientific methods is a so called „case study“ so please don’t argue about terms. We all agree that more research is needed. Additionally he said that he had the clinical symptoms.
I had clinical symptoms congruent with me/cfs , cci , mcas , pots, and yes , post treatment Lyme disease syndrome. But perhaps the last one is redundant. We have so many post infectious illnesses
 
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This episode may be relevant to what we are talking about.

Discusses Lyme, bioweapon, the controversy from a couple angles , some debate on that , and lake Tahoe cfs outbreak and environmental toxins
https://soundcloud.com/headlessyouthpodcast%2Ftribulations-25-ft-allegedlyzo A lot to cover in a couple hours but maybe we will do a repeat episode with some of you guys if you have knowledge we're lacking


I certainly know a lot about cfs but not about Lyme
 
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This episode may be relevant to what we are talking about.

Discusses Lyme, bioweapon, the controversy from a couple angles , some debate on that , and lake Tahoe cfs outbreak and environmental toxins
https://soundcloud.com/headlessyouthpodcast%2Ftribulations-25-ft-allegedlyzo A lot to cover in a couple hours but maybe we will do a repeat episode with some of you guys if you have knowledge we're lacking


I certainly know a lot about cfs but not about Lyme
Its a detailed episode