Post Polio Syndrome On TV

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Mar 10, 2006.

  1. Mikie

    Mikie Moderator

    Last night, our news did a feature story on patients with Post Polio Syndrome. It was very informative and mentioned that while exercise is beneficial for most conditions, it only makes PPS worse. Treatments suggested were pain meds and plenty of rest but no exercising.

    It was explained that the Polio infection had killed some of the brain's neurons and that others had to take their place. The neurons which were still working were working overtime and eventually burned out. As PPS patients aged, they had fewer and fewer working neurons.

    This is not unlike what Dr. Cheney says about the slight seizure state many of us suffer from. He prescribes Klonopin to protect the neurons from premature death from overfiring. His theory has always made sense to me and, as much as I hate taking a med which affects GABA in my brain, I hope it is helping to protect it.

    Conversely, Dr. Cheney does not recommend stimulants nor SSRI's (and probably not SNRI's) because they increase the state of seizure and, according to him, fry the neurons.

    This is another reason I think it is so important to treat CFIDS and FMS. I know had I not gone down that long road of treatments, I would be worse. I was getting worse for a long time until one day, I could no longer get out of bed. Denial kept me going but it doesn't work forever. If I had started treatment earlier, it likely would have not taken so long. I like the FFC's because they are so aggressive. I do not believe most docs know just how aggressively our illnesses must be treated.

    Love, Mikie
  2. karinaxx

    karinaxx New Member

    I am in contact with Jane Colby from Tymes Trust in England, an organisation which specializes in ME (cfids) in children. They believe that ME(cfids)is having something to do with the Polio Virus or generally Retroviruses. I dont know if you know them, but it is intresting to read into their stuff at www.tymestrust.org
    karina
  3. Mikie

    Mikie Moderator

    My stepsister has PPS. She is now on oxygen and has trouble getting around. Unfortunately, she smoked, like her dad, my stepdad, and probably has emphasema like he did. I don't know whether that's why the oxygen or not.

    I think a lot of PPS people are probably misdiagnosed as having CFIDS or FMS. Some had such light cases of Polio as children that their parents didn't even realize that's what they had. One type of the vaccine may have given them Polio.

    At least with CFIDS, we stand a chance of healing. These people just seem to continue to get worse.

    Love, Mikie
  4. Bambi

    Bambi New Member

    meds for PPS. I know not that long ago they had an awful time trying to get pain relief. When I asked my pain
    specialist about it several years ago he just said "Shhhh, don't think about that right now". Of course he does always check for muscle loss etc but I haven't had any yet. I had a guy in a chat support room I was in who had gone from standing, to a cane and to a wheelchair in a short time. He was worried about having to go to
    an iron lung type device next. It can kill you I think.
  5. Mikie

    Mikie Moderator

    I know that everyone who was vaccinated probably wonders whether she may have PPS and not CFIDS or FMS. I watched a documentary on "The Origin of AIDS," and the theory is that AIDS came from using tissue from chimps to produce vaccines.

    CMV from the Herpes Family of viruses may have come from animal tissue. I know vaccines have helped wipe out many diseases but I also believe they have caused some huge problems we are now dealing with.

    Love, Mikie
  6. Bambi

    Bambi New Member

    wore a brace through most of kindergarten. When I heard people were getting it back, I ran out and got a new dose..foolishly thinking that would protect me from PPS. In fact I may have done just the opposite of what I should have done..but at that time there wasn't that much info on
    PPS out.

    I read an interesting article that said since we started giving the Polio vaccine in Africa they have had their first outbreaks of the disease.
    Now when villages hear they are coming with the vaccine many run and hide out in the jungle to try and avoid it. Maybe they are smarter than we were.
    [This Message was Edited on 03/11/2006]