Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Sep 10, 2010.

  1. AuntTammie

    AuntTammie New Member

    I have been crashing so badly lately & it is really affecting my cognitive processes, as well as the physical stuff........the reason that I am finding it particularly frustrating rt now is that all the info about XMRV and the latest study is finally out & I cannot get my brain to function well enough to figure out most of what I am trying to read

    eyes are not working rt, can't stay online long bc I keep getting incredibly nauseous & in pain, exhaustion is making everything incredibly difficult, etc.....all sorts of other ever so fun symptoms getting so much worse, but the timing for the cognitive issues is REALLY getting to me bc I really need to be able to understand this stuff becasue I am extremely desperate for some hope

    ....have been hanging on and waiting to read all this, and I still don't think anyone can really say yet if a retrovirus is the cause, a cause, or just strongly correlated with ME/CFS.....but I so seriously need to be able to read and comprehend this.....grrrrr
  2. gapsych

    gapsych New Member

    Sorry you are going through this. I know all of us want to keep up with this latest news.

    Can you tolerate something like a podcast?

    I only get the dizziness with the computer maybe once every three months or so and can only imagine how awful it must be to have it day after day.

    Take care.

  3. AuntTammie

    AuntTammie New Member

    thanks for your general I have more trouble with cognitive processing when I hear somethign, as opposed to reading it; however, at this point, a pod cast may be better than trying to be online much

    do you know of any good ones re the latest retroviral info?
  4. gapsych

    gapsych New Member

    I know the Q and A session is on YouTube but you could also just listen to it. I think there is a way to download just the audio but have no idea how to do that. I wonder if there is an audio version?

    During a conversation I have more trouble processing what I hear. However, if I am listening to one thing such as NPR, I have no problem concentrating on it. Go figure. I like to download it on my IPOD so the ear buds probably also help as I think part of the problem is background noise interfering. Kind of a figure/ground type of thing where the two are competing.

    Good luck and let me know if you find anything interesting. I have become fascinated with virology but a lot of it goes over my head.

    [This Message was Edited on 09/11/2010]
  5. AuntTammie

    AuntTammie New Member

    thanks - I will definitely have to try to listen to this soon
  6. simpsons

    simpsons Member

    hi long time no speak

    sorry your feeling bad i.m the same the more you try to do the worse you get i.m doing it as well

    the advise i give myself is this
    you know what to do rest and stop trying to push yourself - the more you push the worse you get

    care with diet wheat eggs dairy

    herbal antivirals echinacea melissa

    stimulate cell energy q10 magnesium

    b12 supplements for brain function energy and muscle pain

    sleep most important of all perhaps

    if my pots is bad i add salt to my diet (though caution for some here)

    the basics are this is looking like a retro virus like hiv

    though this is a gamma retrovirus

    judy.s study was backed up by alter (lasker award winner)

    prof k d meirleir has also confirmed positive

    they have found it in nasel passage and other organs around the body

    it can be reactivated by excessss stress on the body as we know by emotional physical stress a bug flu or other illness

    they have looked at some retrovirals used in hiv and they have found not all are going to work as different virus. and caution as retrovirals can do mitochondrial damage in hiv and we already have mitochondrial damage

    the blood working group are working on this now a found it in blood donations

    its not just the xmrv but mlv.s which are variations or related virus's

    they are working on a test and have found i think rna in urine so that may be a test they will work on

    some of their top people are working on this as per the sticky post at the top of the front page

    any corrections are welcome i.m just as brain fogged as you aunt tammie so don.t worry

    rest well and come back to in when you are feeling a bit better

    there is nothing thats going to come out in the next few days that will change how we are treated straight away it may take months

    though by christmas i think i hop we may have a nice christmas present in the way of news

    peace rest and goodwill

    take care
  7. ljimbo42

    ljimbo42 Active Member

    I've been dealing with severe cfs and fibro for 20 years and the best,cheapest, and fastest acting supplement I found is vinpocetine. It is very inexpensive at, its $5 for 90-10mg. You can also get it at vitacost fairly cheaply. Its a supplement that starts to work within 10-15 minutes. I've been taking it for a few months now and it really helps with focus and concentration. I take 10mg 2-3 times a day and it works great! Best of luck.....jim