Search results

I know this isn't what you were speaking to, @Mij , but lest anyone think I don't deserve my ME/CFS diagnoses, I received them from no less than six clinicians, four of whom were all prominent ME/CFS researchers. Each one would be recognizable to most on this forum - and each was well acquainted...

This is still widely underappreciated. Fortunately, awareness is slowly gaining traction, as is the novel(!) concept that some of these pathogens can cause neurological problems via infecting the brain, including babesiosis. Th babs brain connection should have been on the map in a big way years...

I hear you. But that's not the way it works. It's not the real world. I had an embedded tick removed in the center of a bulls-eye. But I'd been infected long before that. That was almost 20 years ago. Since then I've tested positive on the 2T and the C6 and the MTTT - all FDA aprroved and...

Sure you can. PEM aside, tell me the difference between Lyme symptoms and ME/CFS symptoms. They can be identical. It's easy to appreciate how doctors can confuse one for the other. Compound that with dismal diagnostic protocols and solutions, and one's own immune abrogating Lyme responses. It's...

I did. I do. Why? Did the Lyme kill off the ME/CFS? Does that mean I need never worry about getting cancer as Lyme will eradicate it? People can have more than one disease at the same time. I've three at least right now. Four.

Oh dear. In the US, in North Carolina, many CDC-approved and FDA-approved tests for Lyme were positive for patients, and later recommended to be discounted because someone maintained there weren't enough of the right kinds of ticks in NC. Which is just silly. This blade swings both ways. Who...

Can you, if you stick to FDA-approved? Although there are gougers for sure, I'm not clear on how large this specific problem is. Lyme patients aren't all rubes; people know how to research, and now more than ever before, they do. Period. Here is the real problem. This is a two-sided coin. Show...

There are some genetic tests. Not many. There are a handful of neurologists that might make a clinical call. Sorry, I don't remember in general how testing is done. I know only one rare type, and it's a genetic one. I think testing sodium/potassium/calcium levels while episodic might be a way...

It's like trying to share the gravity of ME/CFS to not just healthy people, but to other chronically ill - you have to live with a channelopathy, or live with someone who has one, to grok it.

How many diseases that fall under this umbrella have fingerprints on them?

I wonder who the science advisor was for the Contagion script. :rolleyes:

While it's great to sorta admit there are long-term intractable problems with some infections, and it's great to unite infection sufferers under a kind of support group/banner, and yes, there's power in numbers - I still cannot help feeling "one step forward, two steps back". How'd direct CDC...

Small world. I was recruited for this for the CFS cohort, and also considered for the PTLD part; I declined regardless: And I was in a subsequent one to this below with the Georgetown U folks.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9632922/ https://pubs.acs.org/doi/10.1021/pr300577p

Mental illnesses are problems with the brain. I use brain cancer as my rubric. Would I go to a psychiatrist to treat my brain cancer if I developed it? That's just silly. Nor would I go to one if my brain were infected by a pathogen - even if I evidenced mental problems. If psychiatry is...

That lot wears hyperbole like a bad toupee.

Diagnostics suck.

I have found that the math is not a neat math. It's more or less guilt or success by association. My ire is pretty much directed at diagnostics, but I've plenty to go around. There's more than enough for clinicians and researchers who ascribe binary diagnoses to phantom culprits based on...

How do you balance the positives associated with treating possible bacterial infections with the negatives of mitochondrial problems?