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I have bilateral vestibular damage. I was tested and it is pronounced, as I recall. The thing is - and my memory is suspect - I recall the ENTs at this leading research facility opining it could be my brain, that infection may be the cause. I remember asking them how we could check, and they...

Pinwheeling. I get this sometimes when I am laying down. It's really disconcerting. I've gotten so bad I could not do anything but try not to puke. It's like my head is moving desperately to turn behind me, and my eyes are lagging behind and trying to catch up. Only, I'm not moving There are...

Are there any pwME that have gotten/are getting their LDH tested to see if it's elevated?

Isn't there a link between high RDW and NO? I wonder if this relates to decreased red blood cell deformability someone (Ron Davis and others?) found in pwME?

Addicted. To exercise? I remember when addicted meant addicted.

Yes. The brain could just be one of a couple privileged sites. How do you check, I wonder. Even in autopsy, tissue sampling has to look for something. Can one just look at neuroglial cells and see they're not structurally right? Do you have to look for some sort of signature or footprint...

I am reminded of that old Woody Allen quip, "I would never belong to a country club that would have me as a member" - or something along those lines.

A lot of good stuff in here, "abnormal sickness response" references notwithstanding.

I know it; I know I should try it. Whether I can muster the will power...Thanks for the input.

I do not understand. I think my brain is shutting down for the day. I may have Hashimotos. I am hypothyroidal and on levo. But every now and then I test positive for that anti TPO thing associated with Hashimoto's. I shrug it off since treatment is the same, ie, levothyroxine, but maybe a...

10 to 30%....It's kinda weird how that 20% persistence to the point of disability keeps surfacing. It could suggest an immune issue common to about that amount of people. I don't believe that for a second. Moreover, if anything, I suspect that roughly 20% on average estimate is way, way off...

I'm not a fan of the dutch study. For example, look how they estimate cognitive difficulties. How do you really accurately do this without assessing pre-Lyme levels against Lyme levels on an individual level? The answer is you cannot, certainly not with most of the blunt cognitive assessment...

Look at the first sentence of the Dutch study: "Concerns about long-lasting symptoms attributed to Lyme Borreliosis (LB) are widespread in the western would, while those symptoms are highly prevalent in the general population." Without reading a word more, I'd respond apples and oranges. A...

Yes. I couldn't agree more. But medically speaking I fear such stories would fall under anecdote or, if lucky, a case study. I used to work for a research firm. We did loads of questionnaires and focus groups and the like. We had a discerning group of clientele, too, so they had to pass muster...

How do you qualify what patients experience, in a statistically compelling fashion, if not through a questionnaire? Just because so many have been crafted poorly and even, arguably evilly, it doesn't mean a good and useful one cannot, or should not, be built.

Bets on whether the "fatigue" and "cognitive" efforts will prove successful?

Or on roughly 20% of Lyme patients, for that matter. And some other issues that are not so ME/CFS like, e.g. lung issues. Oddly, many with chronic Lyme have lung issues, but this is primarily due to excess baggage associated with sister TBD's like babesia. Do people with Lyme have PEM? I don't...

The patient voice frequently is best heard from a questionnaire, but it can and is distorted all the time. Questionnaires have for many of us become synonymous with sleaze and bias and corrupt intent. A patient-selected patient advocacy needs to work with an independent questionnaire company to...

I have been diagnosed with both. Over the past two decades I have been a member of many ME/CFS and Lyme forums. Although what you opine, @Dolphin, certainly has happened, it has been - at least in my experience - the exception rather than the rule. I can only speculate as to why. BTW, I find...

If I had to guess, I'd say it's similar to the reason many with ME/CFS disparage and don't want to be associated with the chronic Lyme community. It's the whole True Science only validates me and mine gestalt.