Are our Brains SUNK?

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 2, 2009.

  1. ladybugmandy

    ladybugmandy Member

    i am very worried. my brain fog has ruined about 17 years of my life - it is SEVERE.

    and i keep reading about how many HIV+ patients, even on the HAART protocol, have cognitive decline. the damn virus keeps on replicating in the brain, where a lot of the drugs cannot reach high enough concentrations.

    is this our fate too?

    i am just starting to accept that i have a retrovirus and all the psychological and social repercussions that will accompany that - not to mention how long it might take to feel even a little better on the toxic drugs....

    but are we going to be aging faster, becoming senile faster, and dying sooner like many HIV patients?

    i don't see why not.

    :-/ wish we had even a little good news in this mess for once.

  2. romalaw

    romalaw Member

    Hi Sue, I'm sure your brain fog feels severe to you, but it doesn't come across in reading your thoughtful, intelligent, well crafted posts.

    I have also had the same questions about aging faster and whether there have been any studies correlating dementia/Alzheimer's with CFIDS. I know I have felt like I have aged more rapidly in the last 11 years, particularly when I compare myself with my friends and family my age. While I still have brain fog and cognitive deficits with the damn disease, in some ways it has improved from the early years, or maybe my brain has learned to compensate, or I've restructured my life in a way that helps to minimize it. I do know that NADH, klonopin, prednisilone and adequate sleep help.

    Are you still on the antivirals, tapering off or gone cold turkey.

    I was going to also rant about Dr. Lerner but I guess I won't go there.
  3. TigerLilea

    TigerLilea Active Member

    Hi Sue - You might not have XMRV. Don't forget that the original testing was done on the sickest patients that were hand picked. There have been a few people now who are reporting that their test results came back negative.
  4. ladybugmandy

    ladybugmandy Member

    tiger....thanks for the post. i know i will have it. i have been tested for everything under the sun and nothing has really come up as being definitely active in all this time. i can feel that this is it, for me at least. my symptoms fit perfectly with a retrovirus and my neurological problems are worse than most people i have spoken to. its like someone is squeezing my skull in 24/7.

    romalaw....thanks for your post. i have been meaning to call you again...i have something interesting to tell you:) please let me know when it would be a good time.

  5. romalaw

    romalaw Member

    Hi Sue, call me anytime today after 4:00, all day Friday or Saturday. I'd love to talk with you.

    Glen, yes, I take 10 mg of NADH first thing in the morning on an empty stomach. It really helps my cognition. I have stopped it a couple of times over the years and even my husband notices the difference in how my brain functions (or doesn't) when I'm off of it. I've been taking it about 5 years.

    I tried it once in the 2nd year of my illness (it's been 11 years) and at that time it did nothing for me. But as with several supplements/treatments I've tried, sometimes they work differently at different stages of the illness. Hope this is helpful.
  6. onset1990

    onset1990 Member

    It makes me sick just thinking about what I've lost...memory, ability. I haven't lost my creativity or abstract thinking. Just the cognitive ability to use it! It's like everything is in the drawer but I can't get the drawer open. Do you know what I mean? I feel scrambled!

    oh, I should add, 20 years of this for me![This Message was Edited on 12/03/2009]