UK CFS Patient Rediagnosed with Lyme

[duncan]

Thanks @duncan the bullseye rashes is the only thing that makes me think about testing for Lyme - I don’t remember feeling ill around the time or in the year following. I noticed you mentioned swollen knees in subsequent posts. I have some pain in muscles and joints but not noticeable swollen knees. I suspect that if anything I had a mild Lyme infection at the time of the rash that hasn’t persisted but may have contributed to me getting ME. Several years earlier I had chicken pox as an adult and also think this is a contributory factor. I definitely get PEM which also makes me think probably not chronic Lyme. If the testing was more reliable I would do it just to check. But if I get negative on the current tests I still won’t really know so waiting until there are better options seems sensible rather than spending cash to learn nothing conclusive.

This is somewhat similar to the path I took relative to ME/CFS and Lyme. I am oversimplifying a bit for the sake of narrative, but I got a bull's-eye rash. I knew what it was immediately. I had never had Lyme at the point, but I felt I could ride it out and let it resolve on its own, especially since I was a partner in a research firm, and I was reluctant to take any days off unless I had to.

Sure enough, the rash subsided without me going to the doctor's.

About a year or so later, I started having trouble with my balance. I had trouble with driving a car. I had depth perception issues. I wrote a lot, and I started having disconcerting issues there. I didn't know it, but I believe this was the beginning of my struggle with neurologic Lyme. Like you, I did not have swollen knees. A year after that I got shingles, and a nasty virus, and one year later I got another bulls-eye. This time the tick was embedded and the doctor removed it himself, and after a few days feeling like I had a bad flu, I was diagnosed with Lyme.

The way you describe your muscle and joint pain and of course PEM, suggest ME/CFS to me as well (not trying to diagnose you, of course), but if it were me, I'd want to do a western blot - if only because you might have had the EM. But it's not inexpensive, and I do not know what it would show, and you'd likely have to buck the system because in the UK the test usually administered is the C6, which is an ELISA.

In the States, in endemic areas, people try to find doctors who know a thing or two about Lyme, they take ten days or so of antibiotics right up to the day they get tested. This, in theory, agitates the spirochetes in infected patients. This triggers an immune response, and you see more positives on your tests - but only if you're, in fact, infected.

It's a process, it's not cheap, and testing sucks, so I wouldn't second guess you for a second if you just sat pat.

 

[Inara]

But what if I said that what you have learned about Lyme and otherTBDs may be a spoon-fed marketing campaign to make you think exactly as you do? You'd scoff, yes? So did I until I dug into it. It's what I did before I got sick; for three decades I was a research analyst. What I found when I dug beneath the surface of Lyme turned my stomach. It undid everything I had learned as a kid about Science and the scientific endeavor and integrity and truth before profits etc.

Could you give some references to read? I am not well informed about Lyme but interested.

 

[duncan]

The best book I have read is "Cure Unknown" by Pam Weintraub.

But it's a book, not a study.

I can direct you to specific studies - like the internal effort to replace the CDC 2 Tier with the C6, which the UK bought into - but these are very very specific, and there are so very many of them. I tracked down like 10 C6 studies, in sequence, starting in 1998 when it was first proposed.

One that stands out is Steere's 1983 watershed study bifurcating symptoms. Remember, it's a contrived bifurcation. Some might argue this help set the tone for belittling patient symptoms, although I don't think that was his intent at the time. It may be behind a paywall, though, now that I think of it. I actually payed to read it, it seemed that important to me. Weintraub discusses it in her book, if I remember correctly.

For me, reading about the development of the C6 back in 99 or 98 helped a lot. It lent some perspective into the politics that were developing at the time that helped shape the Lyme diagnostic market. It was meant to be a replacement for the 2 Tier, but it got too much resistance, despite the NIH's participation. Nevertheless, it is the go-to diagnostic in the UK

Look into the Lymerx Vaccine debacle. For many people, what is happening with Lyme is all about $'s, and the Lymerix vaccine - it's development and marketing effort and subsequent withdrawl, are a case in point.

Maybe have a go at IgeneX website. This might help you understand why they include bands 31 and 34 in their WB when the CDC does not - and why these were shelved during the 1994 Dearborn Diagnostic-Vaccine nonsense.

Let me know if you want me to list specific studies.

ETA: What you need to read is the negative stuff that has come out of the likes of the ALDF, headed by a former lead of the NIH Lyme Team. Then there is the current Head of the NIH Lyme Team, Marques, who is part of the ME/CFS NIH study. Makes me shudder - like the 2015 or 2016 study she headed, as I recall, that stated people that had Lyme not only were cured of Lyme with CDC/NIH recommended abx protocol, but actually felt better than before they ever got sick.

There is literally so much...I'm like a kid in a candy shop without any sense of direction or time, and holding my Mom's credit card.

Maybe just read Cure Unknown, @Inara. It really is that good. It will give you all you need to know about the science and the politics and the skullduggery and the very real risks and chaos that pervade Lyme.

 

[Inara]

Thank you duncan, that's really a lot