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My dear friend took Xyrem for ME related insomnia, he did not do well on it. He experienced hallucinations.

Small movements for those who are able can be beneficial, simple ways to engage in low-grade, constant movement throughout the day, utilizing natural movement patterns like walking and bending to get the pot out of the lower drawer.

So I'm a little over 2 weeks post second Pfizer and I can say that it didn't improve my vestibular virus or health.

My understanding is that the casual link with RA are “effect” rather than “cause” and can be explained by an underlying immune dysregulation?

He received a letter of warning from the FDA several years for making 'treatment' claims to "treat' alzheimer’s, heart disease, cancer and diabetes. He's a shyster.

Thirty years ago in Canada, I was told that there were no treatments available, and that we just don't know who will recover and who won't. That's the truth, even today.

I agree @Invisible Woman Admitting they don't know shouldn't dismiss the fact that their patient is ill/disabled and needs support even though the prognosis is unknown.

There is nothing wrong with a doctor telling their patient that they simply don't know.

@Barry This was the same situation here in Canada.

The thing is that the physician does not know the outcome and yet chooses to discourage the patient with a negative outcome. Thankfully she has support and joy in her life. There are many that don't, and this sort of attitude could be the final straw.

"I was sitting in the wheelchair that I’d needed for the past four months when a physician concluded our appointment by getting on his knees, looking me straight in the eye and declaring, “You need to accept that you’ll never work again. You’re too sick.” Just wow, what a terrible thing to...

I am curious to know what tests were performed to determine that he would benefit from taking methotrexate.

Does anyone know if Brian Vastag got sick at all from the J&J vaccine? He wrote that he is 'immunosuppressed' and not 'immunocompromised". What makes someone immunosuppressed?

Yes, this is the way it feels for me too.

I'm actually quite amazed how members here can write long articulate posts. I can not write more than 2 small paragraphs. Question for those with cognitive PEM or cognitive impairment. Do you have a sore head/forehead when you are mentally drained? I can recover much quicker from...

Exactly. My brain actually shuts down when my heart races and breathing increases. I have to stop talking in order to preserve my physical energy so that I can continue the walk.

I feel dehydrated not thirsty. I also feel hot during PEM, and drinking a lot of fluid doesn't relieve symptoms.

No, but I was able to sit upright for long periods of time, and didn't have chest/forehead pressure or any other distressful symptoms that I experience now. Maybe there is also something else at play? I started experiencing OI after I had a relapse from taking immune modulators that...

The interesting thing is that I didn't have orthostatic impairment during that time period. That developed several years later.

My cognitive exertion/sensory can induce physical PEM and vice versa. I went for a 2 hour car ride several years ago and I could barely lift my arms the next day, and I was the passenger.