Search results

CBT for renal issues? Mind over bladder?

This is an Aucott effort. I couldn't help but notice they cite 5% to 15% of Lyme patients go on to develop so-called PTLDS. The commonly accepted range, for years now, has been 10% to 20%. But there is a revisionist movement within some of the most conservative fringes of Lyme establishment to...

@Webdog , you could send one additional letter noting it is your 4th (or whatever) iteration, only cc it to your Congressional Representative, and let them see that cc. That might get their attention. I don't think I'd care for that stress, personally, so I wouldn't blame you if you opted...

I am not sure they have really explained it in this interview. You can plug in just about any virus or infection where he uses "Lyme", and come up with a post-viral fatigue type syndrome. It also is not clear that these ex-Lyme patients won't eventually come down with sequelae; many who...

I came away from this interview with an uneasy feeling. The lead investigator seems centered on - yet again - fatigue. Moreover, the other ME/CFS feature that appeared to have his attention is malaise? So what he, in part, tries to impart to the interviewer, the specific sequelae of pwME that...

There are hundreds of diseases/infections. Hundreds. Out of this rich pool of infectious diseases from which to pick, they just happen to pick the one disease that arguably is more disputed,more contentious than ME/CFS? "Convenient" does not do it justice.

Lipkin was joined in this effort with Lyme royalty: Adrianna Marques of the NIH, and Brian Fallon of Columbia U's Tick team. That's significant backing. I wonder if a clinician ordering the test for a patient can pick and choose those pathogens he wants tested, or if it's a set template, and...

These days, @Webdog , with the rate of flu deaths for kids at an all time high, and increasing coverage of the Lyme debacle grabbing the spotlight, CDC repute may be not something NICE wants to hang its hat on.

Yeah, sadly, there are not too many of these, are there? I imagine there are far more expert ME patients, and many frequent this forum. As it is a forum, discussing symptoms, while refraining from making diagnoses, would be expected. As ME/CFS is a syndrome by some definitions, it's not too...

I would think one way to approach this is via patients' ejection fractions, and I see that one of the links provided by @Andy suggests the same.

Eh. Although it would be good to have a packaged lab approach to helping diagnose multiple TBDs, I am under the impression after reviewing this that it would still only be testing for exposure, which for Lyme at least means we cannot distinguish an active infection. If I am misinterpreting...

Yes, that is one good explanation. A second might be that the infection persists, frequently at sub-clinical levels, at least in terms of most conventional labs.

I'm not sure this accomplishes or prevents what the researchers might imagine it does. Moreover, to some it might smack of false peer-reviewed nonsense with a dollop of elitism thrown in for flavor. Letting patients in to at least listen to hitherto closed sessions might actually aid in the...

A psych looking into biobehavioral gender differences in pwME? What could go wrong?

Most ME/CFS manifestations are refractory to treatment - if only because no one know nothing about treatments which consistently work for any subsets, let alone across subsets. "The prompt restoration of normal function" is at best a myth for most pwME.

Sleep...A downstream effect. I should think well they know it.

What a load of crap. Weight is secondary. Fix the primary culprit first. Oh, right...

I have a tin ear these days - upon rereading what I wrote, it did come across negative. Sorry. Tell the neurologist you have concerns about PP. People with PP often have treatment options that really work, which for most of us would be a good change of pace. Oh, that sounds like a downer, too...

It's a challenge to find a neurologist qualified in this area, for sure. It's not unlike finding an expert in ME/CFS. If there are 1000 neurologists, maybe only one or two would have a vague idea of PP. You read a PP patients' forum and it reads like an ME/CFS forum - often frightening and bleak...

I am no doctor, but these descriptions seem similar of those I've heard from patients with various forms of Periodic Paralysis (these typically involve channelopathies,e.g. potassium). Episodes can occur at odd times, for instance, upon waking. It may be prudent to see a competent physician to...