My wife would freak if ME/CFS proves to be a channelopathy. She would think I'm encroaching on her space - although technically hers is a potassium channelopathy, not calcium.
I must admit the overlap in symptoms can be, at times, striking.
I lump them both under exertion PEM, but maybe you are right and they are distinct, @rvallee .
Sound sensitivity appears to be a trigger for you. Perhaps it's the noise in and of itself, or might it be you focusing on the noise? For me it's the focusing that can be my undoing. Concentrating...
AD and AD plaques and a potential role of infectious disease biofilms:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5008232/
This link suggests spirochetes as a possible agent, but it could be any one of several infectious diseases. The spirochete angle is supported - in addition to this...
Is there a disease that doesn't have fatigue as a characteristic? If so, THAT is the disease that needs investigating into fatigue. The rest seems like busy work, like when you were a kid in school and you pretended to be reading during study or quiet time, but were really just wasting time.
My infectious disease doctor is suggesting I get this test. I have to explain to him why that is not a good idea:
a) It is a much better test for early Lyme, with very impressive accuracy ratings. But for late stage - not so much;
b) It's not FDA-approved, so you pay out of pocket, and it can...
"...nor do we have objective tests that make diagnoses secure for any of these conditions."
a) Actually, there are three FDA-approved objective Lyme tests that can be - and are being - used to diagnose late stage Lyme refractory to antibiotics, aka chronic Lyme. So there are objective tests...
@Mij, my csf results were inconclusive because they didn't do all the tests they should have, given the protocol. So one of the doctors reviewing the results of the vestibular testing was just opining about testing for any brain infections that might be behind the vestibular issues...
Well, I don't recall. My take away was they (two doctors) were talking about a brain biopsy, but the vestibular includes things outside the brain. They were intent on describing how screwed up my vestibular system was, and I was trying to affix a cause. They said something to the effect it could...
"Goofiness"? That's an OI thing according to this study? Fair enough.
The boat swaying, which I can identify with, I associate with vestibular issues, but who can say? For me, it's the whole head thing, including sight and hearing - but balance is definitely off, enough so I take nausea meds...
I'm not sure that catagorizing MS as autoimmune is universally accepted, or even if there is consensus that points that way. I seem to recall a good deal of writings that leaned toward infections of various sorts.
I don't have a horse in this race; I'm just wondering at the almost assumptive...
It's funny how a handful of the entrenched older guard from a couple of specific medical niches cannot shake free from their perverse obsessions, even when the writing is on the wall, even when the world is increasingly watching and aware.
I cannot help but wonder what the formal difference is between an anecdote and a case study. Level of detail or scrutiny? Who is doing the scrutinizing? Length of write-up? Whether it gets published?
In terms of utility, is one necessarily better than the other outside of the name?
If as a...
Those among us that have been this sick for an extended period likely have long since reconsidered wellness advice from most everybody.
I cannot think of a single expert, especially world-renowned medical researchers/clinicians, as well as medical institutions like the CDC and NHS, whose advice...
Willy Burgdorfer discovered the causative agent behind Lyme. He was recruited to investigate an outbreak of something in CT because of his world-wide acclaim when it came to the study of spirochetal and ricketsial diseases, among other vector-borne diseases. He identified the new species and he...
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