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I took Imunovir. The virologist I saw did a small study with Dr.Hyde years ago on ME pts. I asked him how they felt after the trial and he told me they felt 'less fatigued'. Well, it put me into a terrible relapse.

One thing I am certain of is that I will never take another immune-modulating drug ever again. I went from feeling 90% improved to 30% in 2001 from taking immune modulators. The drug reactivated HHV6 and EBV and I relapsed terribly, my CD4 and CD8 t cells plumited. I was left...

@chrisb I've seen him lurking here under his own name :emoji_eyes:

Ron Davis: 25:47 Now the other thing that we decided to do in this project is to test some of the ideas that patients have had, are they right or not. So I've heard a lot from patients that "Oh I keep getting viral infections . . .I get them all the time, it's really my real problem . . . I'm...

So we can now refer it 'it' as a recyclable virus?

Are you familiar with the history of John Martin? He is a fraud, there is no such a thing as a 'stealth virus'- it was his own creation. A good friend of mine was watching NBC news when reporters tracked him down and tried to interview him in his driveway to confront him about his bogus...

I took the potent Turkish nigella/black seed oil daily for 2 years with no results.

From my own personal experience with ME for almost 30 years.

I can guarantee that there is zero correlation.

@Sarah94 as someone who has been around the ME community for almost 3 decades, I can tell you that this is nothing new. It just becomes circular, unfortunately.

In general I sleep well and wake up feeling refreshed, so unrefreshing sleep has not altered my cognition.

I didn't experience cognitive/processing decline for the first 11 years of illness, I was sharp as a knife, it was when I started improving and doing physical exercise (PEM over and over again) that my cognition declined. I didn't even realize this until a few years later.

@Kitty there are distinct differences and some similarities between sickness behaviour and ME, take a look here. I experience both. Also, the "PEM" I experience with sickness behaviour is immediate, my ME PEM is always delayed.

Yes that is correct. I can no longer blow dry my hair upside down and have to put my foot up on the wall at eye level to tie boots or sneakers. Also, looking upwards with my arms up (putting up curtains or cleaning vents) makes me feel very unwell for hours after, but I think that...

@Forbin Please share :) I turned into a complete drama queen when they did the vestibular caloric stimulation test at the hospital. Pouring cool water in my ear, turning the lights off and asking me to count backwards from 100 was more than I could handle when my head starting spinning at...

Ok, you go first :D

The thing is, the actual vertigo does not cause energy depletion for me, but when I'm over exerting (physical and mentally) that swaying sensation in my head starts up and I need to lie down for it to stop. Back in 1992 when I 'recovered' from my sudden viral onset after being ill for 8...

@Forbin a sudden viral vertigo attack caused my ME onset. The injury from that episode changed something in my brain. For years I felt this rocking/swaying side to side movement sensation in my head and the only immediate relief I got was lying down. After 6 years it went away, but...

@TigerLilea that is just terrible. So many things can cause this, viruses, falls, explosions/blasts, sports etc It's very debilitating.

This might be what Dr. Moreau is seeing in his "type 1" vertigo ME subgroup regarding exertion?