CFS: Permanent damage

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jul 11, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i was wondering if anyone could ask their specialist about the supposed STAT1 and p53 deficiency they say all CFS patients have. can this cause a lot of problems later on? these enzymes are very important for cancer defence and pathogen control.

    the articles i read about this are way over my head and my specialist is hard to talk to.

    if you do get well from CFS, how damaged is your immune system still???

    thank you
  2. spacee

    spacee Member

    Dr. Cheney thinks that our dna is changed by CFS and he thinks that his protocol should correct it in about 2 years.

    I have always done some of his suggestions but now I am doing more. Supplements and B12 injections, breathing exercises.

    Any info you want about him is either in the library or you can google his name and "treatment". Jam338 says that he has some new DVD's coming out very soon.

  3. RunningAntelope

    RunningAntelope New Member

    That's simply not true. It may be true later in the course of the disease, when physiology normalizes somewhat, though the major damage has already been done. In the early days of the pandemic, there were many proven immunological abnormalities, including immune depression, depressed NK numbers and activity, and a CD4/CD8 ratio abnormality that was the mirror image of AIDS. And, frankly, many of the patients had depleted CD4 counts that would clinically have put them in the AIDS camp. I was one of those, along with all of my opportunistic infections in the first few years of the illness. My immune system has since normalized, with the exception of high antibody titers to EBV and HHV6, which, of course, means nothing.

    I would go so far as to say that if you did NOT experience the profound damage to the immune system in the first few years of your illness, then you do not have classic CFIDS (Chronic Fatigue Immune Dysfunction Syndrome). You may be in the "chronic fatigue" bucket, but you do not have MY debilitating disease.
  4. marti_zavala

    marti_zavala Member

    You are mistaken.

    In additon to list from running antelope, there are several other abnormalities including TH1/TH2 imbalance, excess cytokines, etc.

    There are currently two research studies that are documenting the immune issues.

  5. findmind

    findmind New Member

    Funny you should ask...

    Thursday, after discussing all my various labs, MRI, x-ray, and finding I'm fine on B-12 and Vit D (35), I asked the dr. if he could explain to me what STAT 1 is...

    His answer: STAT? That's the emergency call for doctors, in hospitals...I said, no, STAT-ONE!

    He said he had no idea...was he lying, or is he really just ignorant?

  6. jasminetee

    jasminetee Member

    That's exactly how the doctors are looking at it and really, who can blame them? How many of us have been tested for immune system problems?

    I don't think doctors are lying when they say they haven't heard of STAT-1. I would only expect immune system specialists to know what it is.

    STAT is a gene protein. It stand for: "The Signal Transducers and Activator of Transcription (STAT, also, called signal transduction and transcription) proteins regulate many aspects of cell growth, survival and differentiation.

    The transcription factors of this family are activated by the Janus Kinase JAK and dysregulation of this pathway is frequently observed in primary tumors and leads to increased angiogenesis, enhanced survival of tumors and immunosuppression.

    Knockout studies have provided evidence that STAT proteins are involved in the development and function of the immune system and play a role in maintaining immune tolerance and tumor surveillance." - Wiki

    The National CFIDS Foundation states: "STAT-1 is decimated in CFIDS and it turns out that HHV-6, EBV, enteroviruses, borne virus parvovirus, as well as many other viruses are not capable of doing that." This points to something else causing the destruction of STAT-1, if indeed it is being destroyed in us.

    This info is according to NCF's privately funded research. They've known this for years now. The problem is that the AMA and the CDC and other U.S. medical organizations don't pay any attention to the research done by the NCF.

    I would like to hear of any PWC who has had their STAT-1 tested. It would be very interesting if many of us could get it tested. That might help us see what's really happening with our immune systems.

    Also, Prohealth has an article about our immune systems and STAT-1:

    [This Message was Edited on 07/13/2008]
  7. quanked

    quanked Member

    respond here. My thought processes are not what they once were. I saw the "Permanent Damage" phrase and had to see what was being written about it.

    I read a book a number of years ago about CFIDS sufferers. I think it was an anthology by the sufferers.

    Some of the narratives were scholarly and I could not fathom how someone with CIDS could write with such skill. But then not all sufferers have the mind fog I have learned by reading this board.

    One author discussed the permanent damage not of the body's immune system but of brain functions. She discussed loss of IQ overtime (measurable)and the loss being permanent. I have never forgotten this because I feel that I have lost some IQ. It scared me then and it scares me now.

    Not sure why I felt I had to share this but for whatever it is worth.
  8. ladybugmandy

    ladybugmandy Member

    i am half asleep as i write this so please excuse errors... not worry so much about brain changes or "damage". in the people who have recoevered, they say they have recovered all of their congnitive functioning.

    the brain is an amazing organ that can heal and form new connections over time, perhaps with supplements like NADH. yes..there may be an overall volume decrease in the brain in CFS...but if you find treatment and improve, i do not think it will noticed by you.

    i am just worried about the STAT1 cuz i read somewhere...i think it was a paper by demeirleir or one of his colleagues...that if your LMW RNase L/normal RNase L is over 2.0, you have no STAT1 left (and something else is gone too..i cant recall). well mine was much greater than 2.0

    STAT1 deficiency can be lethal and i have read this is in many places.

    there is no commercial test for STAT1.

    i'm trying to piece together the amount of permanent damage we have in our immune systems....i know it is response to IL-15 in people with history of mono.....this all sounds so scary.

    i wish i could see an immunologist to help me make sense of it.

  9. KelB

    KelB New Member

    I'm a recoveree, just dropping by to offer support. I had (what I would consider) a mild case of CFS for three years.

    At its worst, the brain fog was such that I mis-spelled my name when signing cheques and got lost about 300 yards from home on a road I'd lived on for 20 years.

    A year after I first considered myself recovered, I'm going to start a degree course at university. It seems to be my experience that cognitive function can return.

    Wish I could offer hints on how to recover, but mine seems to have been spontaneous. No magic bullet I'm afraid.
  10. RunningAntelope

    RunningAntelope New Member

    Me thinks that Dr. Goldstein's patients probably fall into the CFS camp that has a psychoneuroimmunologically-induced component to begin with; you know, that dreaded, vague notion that CFS is a psychological illness that so many TRUE CFIDS patients have found to be not only terribly offensive, but just drop-dead incorrect? CFS is a large umbrella that may include various diagnoses and catalysts, such as lyme, mycoplasma, etc., as well as personalities that tend toward depression. But CFS is NOT CFIDS.
    [This Message was Edited on 07/14/2008]
  11. jasminetee

    jasminetee Member

    But it's not CF. It's true that some people may not have had CFS in the first place when they think they did but I do think that most people like Quanked really have it. Notice she didn't say she was cured. When people say they've recovered but have CFS they usually still can tell they're not 100% better but they're better enough to function normally again for the most part. They may still suffer more IBS, and get more flus and still get odd pains etc...

    One of the things that keeps coming up is that most people who go into remission with CFS say they didn't do anything in particular, it just happened. I went into a decade-long remission myself and it happened for no reason in particular too.

    Quanked said she hesitates to respond here and I can see why she would. We need to believe each other here because it's important for us to hear from the people who are recovered to give us hope. Also, look at how much disbelief we all encounter out in the world. Believe me, it doesn't go away if you're lucky enough to go into remission, instead people doubt you were ever ill to begin with.

    Sue, I know what you mean. My immune system is not acting right at all and after reading about STAT-1 and other components actually revving up in us and burning out altogether, I'm afraid it's irrepairable.


    [This Message was Edited on 07/14/2008]
  12. findmind

    findmind New Member

    The discussion here is very intriguing as I have just been told for sure that I have myasthenia gravis.

    It is caused by a neurotransmitter called acetylcholine being depleted. First signs (and mine) are the eyes closing of their own accord.

    Today the dr told me 80% "progress" to having to take immune system suppressors, some have their thymus removed (if they have one; they shrink and disappear as we age, he said).

    My limited research mentioned antibodies against viruses and vaccines being one cause of acetylcholine being depleted; I have EBV and 3 mycoplasmas. Of course I never mentioned this to the neurologist who will be following me. (Give me time to work into it)

    Anyhow, what was my point? Shucks, in one brain cell and out the other!

    Can anyone fathom why I responded with my own personal experience? I can't.
    Something about STAT-1? p53? Darn...

    Well, if anyone can connect these dots, have at it...I've lost it!

  13. jasminetee

    jasminetee Member

    It's interesting that you have depletion of acetylcholine.

    "Acetylcholine is one of many neurotransmitters in the autonomic nervous system (ANS) and the only neurotransmitter used in the somatic nervous system. It is also the neurotransmitter in all autonomic ganglia."-Wiki

    I've read that CFS often or maybe always attacks the basal ganglia. It seems CFS and mycoplasmas have the ability to actually knock out important chemicals and proteins in our systems leading to a vast array of Sx.

    What you've shared fits in here perfectly.

    [This Message was Edited on 07/14/2008]
  14. ladybugmandy

    ladybugmandy Member

    findmind..i am sorry about this dx....yet another problem that CFS untreated can cause i suppose.

    long term chronic infections can obviously have so many'd think more doctors would have been on the ball about this years ago.

    i am floored.

    i have to wonder....if i didnt get mono....would i be perfectly healthy??
    [This Message was Edited on 07/14/2008]
  15. Mikie

    Mikie Moderator

    We have had some here who have recovered and they say that they have not lost their mental faculties nor memories. The loss was temporary and returned with recovery.

    Researchers are not finding what they believe are subsets of PWC and that may make the difference in recovery. The same is true of children with autism and may explain why some respond to certain therapies and others do not.

    I have taken an IQ test online and it was a few points lower than formerly but that could easily be explained by fatigue. When I am tired, I transpose letters and numbers and can't remember Jack. It changes, depending on how I'm feeling. There are days when I'm sharp as a tack.

    I think we have to look at healing over a longer timeline. Healing with us usually takes years. I have to take a long look back to see just how far I've come in the last seven years. I've gone from being bedridden and on Morphine, so fogged (even without Morphine) that some days, all I could do is go from the bed to the bathroom by holding onto the walls, to being able to work part time. The difference is amazing but if I only looked at one year in the middle, I don't think the healing would be so impressive. There are still days when I just lie around resting so I can continue to work.

    The big question in my mind is just how much better I can get. The answer may be more years down the road. In the meantime, I'm getting older, so that will offset some progress. I am soooo grateful for the healing which has come my way. I say, "Never, ever give up and expect healing to occur."

    Love, Mikie
  16. marti_zavala

    marti_zavala Member

    I have better cognitive skills now that at other times of my illness.

    So I do not believe brain funtion loss is permanent.

    1. I stopped taking NAC which was causing die off of chlamydia pneu.

    2. I started taking acyclovir for my out of control viruses.

    There is some thought the anti-virals affect the adenosine pathway which is related to dopamine. Not sure yet. But I do know that not being SO sick from viruses, my brain is better from that aspect.

  17. Slayadragon

    Slayadragon New Member

    Usually I want to have as much information about everything related to my illness as I get my hands on.

    I'm not sure how focusing too much on trying to figure out the answer to this question is useful though.

    Unless of course, you are trying to figure out how to repair whatever hypothesized damage is which case it's not permanent at all.

    Otherwise, since there's no definite answer one way or another, focusing on this aspect seems likely just to lead to depression and a sense of hopelessness.

    Of all the qualities potentially relevant with regard to successfully pursuing wellness, those two seem the last on the list of usefulness.

    Just my opinion though.

    [This Message was Edited on 07/15/2008]
  18. ladybugmandy

    ladybugmandy Member

    you are right, of course. if only i didn't have thie OCD!!!
  19. jasminetee

    jasminetee Member

    Personally, I want to know what I'm dealing with. That's probably why I read the scientific articles with a dictionary and sometimes I look up every word I don't know and then study about the body and how it works etc...

    I want to know reality. I can then know for sure that this is a very debilitating illness and that I can expect to get worse over time most likely, (I do still believe in miracles though) and I can plan for that. Also, finding out that this is so detrimental to our health helps me not accept blame that I am not doing enough to get well. If there's permanent damage to my immune system and nervous systems and heart and brain etc... then it makes sense that I'm so sick and in so much pain all the time.

    Knowing the reality of the situation helps me know that the doctors are totally wrong in belittling our illness. It will help the researchers know what to concentrate on as well. It will keep me from spending astronomical amounts of money, time and precious energy on things that can't work because they aren't repairing the damage.

    I'd like the CDC to do this kind of testing on us and then truthfully say what they see is going on.

    I'd love for this information I've read about permanent damage to our bodies to be proven wrong. That would be great. But I want to know the truth.
  20. ladybugmandy

    ladybugmandy Member

    actually, there is evidence. they have tested tissue samples and found live virus despite low antibodies, in many patients.