Search results

NeuroLyme can present with brain lesions. The theory is they dissipate with proper abx treatment, but with inadequate treatment, they can appear and reappear - much like the way that MS sufferer had lesions coming and going. Then you have the whole new anti-MOG thing (used to fall under MS...

I want to say the MRIs aren't THAT expensive, or at least not like a PET scan. Maybe $1,500 US, whereas a PET could be $10,000? It's been a while since I priced them, and my memory isn't want it once was, but I think it's broadly like that (check anyway, as I may be way off). I think if there...

A confused pretzel that imagines it's a straight line?

To me the news isn't so much that this release spotlights Ron Davis's work. To me the news is that it's from the NIH going out to its subscriber base.

I got this in an email today from the NIH. https://www.nih.gov/news-events/nih-research-matters/blood-test-may-detect-myalgic-encephalomyelitis/chronic-fatigue-syndrome

Maybe sleep is a canary in the coal mind. What part(s) of the brain regulate sleep? So much speculation. It's sad we do not know even why one of the common grounds among most pwME is screwed up. And that's not peculiar to ME - we just don't know enough about sleep. I still worry that sleep is...

Yes, I do as well. They are exceptions, but that's okay. You are one of them. Exceptions can become the norm, and we can strive for that and hope for it. But the bad ones - who are the rule today - need to be called out. And the indifferent ones need to be taught their indifference can be...

Good thought, but they don't. Perhaps a primer on how to filter through clinicians to find a caring one. Come to think of it, it would be great if there were a primer for doctors that included a long look at their attitude, at least, for starters; as a group they have refined condescension and...

Device type aside, I would worry about who infers what from what bits of data. Even if we could influence sleep patterns, I'm not clear we have any solid data showing it would help the majority of pwME, or even the majority of severe patients. I even am concerned about the entire sleep emphasis...

I cannot imagine any meaningful utilitarian results without soliciting patient input, and that will be no small feat on several different levels.

You want an evidence base to help manage severe ME patients, and you think you're going to capture inferential data without any questions from this population where labs and imaging are pretty much a bust, and when they're not, the testing is often controversial or unproven? You certainly can...

Medical axioms have a bad history with pwME; they not only may not apply, they can make us worse. You might as well start with asking about our mood when we are crashing, or before we crash, or after. Not only is mood irrelevant as a causative agent, those who query it have mischaracterized us...

What a very kind thing to say! When I said I was not hopeful, I meant I was not hopeful the meds would help. I post less these days because I make more mistakes when I write - one of those is not anticipating how readers will interpret what I right, and what I omit. My understanding is, like MS...

My memory has been on an inexorable decline for years. My Lyme doctor prescribed an anti-viral used for memory issues in Parkinsons and MS patients, but I had a terrible reaction to it, and I tolerate most drugs; I lost an entire day on it because I could not keep my eyes open and kept...

I cannot recall if Davis has any federal funds feeding his efforts, but if so, the Bayh-Dole Act may play a role in how freely he can speak.

Keep an eye on Bartonella. Vets are the canaries in the mines, and guess what is felling them increasingly these days. ETA: I have tested positive for Bartonella a few times, I have no cats, nor have I for 40 years.

Conversion Therapy for the diseased.

I understood @strategist question to be directed not at the diagnosis, but at how the term paralysis was being employed in the label Periodic Paralysis. If I was right, then PP likely would be correct provided it's a channelopathy - despite no paralysis being evident. PP is an overarching...

It is the correct label. Its accuracy is similar to CFS in that some people have fatigue as a principal complaint in CFS, some do not. In Periodic Paralysis, some people are paralyzed sometimes, some people never are, but suffer profound weakness in their muscles, or have other issues. If you...

Few things in our orbit are that simple, including most cases of channelopathies that I am familiar with. Potassium adjustments through diet can help mitigate episodes, but not many sufferers I am familiar with are cured.