Discussion in 'Infections: Lyme, Candida, EBV ...' started by Patient4Life, Jan 8, 2020.
I would put a lot of money on Justin Beiber not having Lyme disease. In fact I'd put a lot of money on a lot of people not having Lyme disease!
I really wish someone could know conclusively whether they have Lyme disease or not. The problem comes when you hear/learn that the test is not conclusive & produces false negatives & false positives. how do you know if you have it or which doctors (either saying you have it, or you don’t), are right?
I feel worried when discussing because theres a thought in the back of my mind - could I have Lyme? I had positive tests at a private clinic - but later found out one of the tests cross reacts with autoimmune antibodies, which I do have - so it didn’t necessarily mean I had Lyme. Yet it was taken to mean I definitely did by the doctor, which made me uneasy. Then the more specific test - came back negative. But people with the exact same test results as me got treated for Lyme, sometimes for years, with antibiotics, herbs etc. Some of them have improved so much, but they also had other treatment as well eg PoTS.
But nearly everyone I knew who went there, with ME, despite different symptoms sometimes, was diagnosed with Lyme. Maybe they did have Lyme - but then it would seem everyone with ME really has Lyme as an underlying condition. But that can’t be true because the OMF etc have investigated that I’m sure...But the Lyme publicity is enough that once in a while someone will mention Lyme to me & how they knew someone who had it and took the herbs and now is fully cured and walking around again - and get me to look into it or research or speak to someone - I will feel bad all over again that I didn’t go for Lyme treatment & question if that’s the reason I’m still ill.
This is one of those things that I wish we had conclusive answers for, as I feel confused whenever I listen to “either side” of the debate.
I was just thinking about this earlier. A clear-cut diagnostic test for Lyme would really improve the situation. A lot of people would find they had been misdiagnosed.
Almost certainly a lot of people are misdiagnosed with Lyme due to inaccurate tests, and vice versa. The problem isn't solved even by having accurate tests though, as many highly rated immunologists think having acute Lyme may trigger a real post-infectious condition, where the infection is no longer active. After all, that's more or less exactly what happens in ME/CFS as well, i.e., often you have an acute viral infection, after which you never recover, but most of the time no active infection is found later on. The difference is, post-Lyme patients usually don't have certain characteristic ME/CFS symptoms like PEM for example. So the issue then becomes, if you got badly ill following an acute Lyme infection, but a bulletproof test told you were negative, what are these patients supposed to do next? They'll end up exactly in the same pit as ME/CFS patients, or even worse because their only diagnosis is taken away, with no support from doctors.
My understanding is that Lyme patients have a higher success rate of recovering if treated early. Three months of treatment is sufficient.
That's a good point. I was thinking of a test that showed any past infection, rather than present/acute infection
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