martizavala question and anyone multiple chronic/stealth viruses

Discussion in 'Fibromyalgia Main Forum' started by theatergirl, Jul 14, 2008.

  1. theatergirl

    theatergirl New Member

    Hi,

    I have been full blown CFS/ME since 1996.
    Was HCMV determined mono which led to Guillian Barre
    in 1978. Fairly "well" many relapsive episodes in my 30's and full blown at 44. I have know for years that my CFS is stealth viral. I hae asked over and over to docs about this and like many others, have received lots and lots of garbage responses, all in my head, blah, blah.

    I have Kaiser only and this DD has literally destroyed my chances of holding down a job any longer, so money has become a real problem. Thahnk good ness I have a great husband who love me!

    I keep wondering if an anti-viral can have affect on chronic/stealth not acute and also if it is primarily CMV with HHV 1, 2 EBV and HHV6 all in there too. If they all have adjusted to hiding and the immune system cannot fight off the bugs.

    No docs have allowed me any antivirals and also if transfer factors might work instead.

    Thanks to all,
    theatergirl
  2. marti_zavala

    marti_zavala Member

    Here is my opinion - which may be wrong.

    I believe that we are all infected with stealth virus - either the same one or a mutated "viteria" part virus, part bacteria, similar to mycoplasmas. Dr. John Martin did a lot of work in the 90's and Dr. H in Hawaii is carrying it forward. The stealth virus puts out a toxin which is similar in structure to the ciguatera isoptope (the toxin that is in the puffer fish). Again, it is an isotope not the actual fish toxin. According to Dr. Martin and now Dr. H. from Univ. of Hawaii, 95.x% ME/CFS patients test positive. You can send your blood to be tested for this for $100 (this may not be accurate today, it was free then they started charging $100, not sure what they are charging now).

    I also have chronic viruses and bacteria. I do take anti-virals and they do keep my viruses under control.

    It was very hard finding a doctor to prescribe anti-virals. I prefer Valtrex but my insurance won't cover that on an ongoing basis but they will allow acyclovir.

    These are old anti-virals and not experimental like Valcyte or Ampligen which seem to be harsher. I had no bad effects - only good ones.

    I don't believe that I am getting rid of it - there are other structures in my body that are not working. The viral symptoms come back within 3 weeks after getting off Valtex, they come back within 1 week after getting off acyclovir.

    But I am not bedridden and my brain is functioning so much better. There is talk that anti-virals affect the adenosine pathway which affects dopamine - still researching this.

    I don't know why I haven't tried transfer factors - I do believe they are effective from what I have read. I think start low and go slow is the key for those. I do not know if they affect the adenosine pathway as I really don't know much about them.

    I would suggest that try to find a doctor who will work with you. If anything, challenge one to give you a two week course of acyclovir to see if you feel better. Also there are many treatment articles where the top ME/CFS clinicians are using anti-virals so that might help you.

    But in the meantime, I would definitely try the transfer factors. I think that I will start them after the summer is over. (trying to get paperwork and housework done this summer so I can hit the methylation protocol hard this fall.)

    All the best,
    Marti


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

    theatergirl New Member

    Hi again,

    Interesting to you...I learned of Dr Martin in 1997. I contacted him and truly believe in his work, knowing that he has been demonized by our govt and has had a very hard time putting forth his theories. I never got tested by him, even though I did a fundraiser here in N Cal for him at my theatre, he came here and he spoke etc. That was so early on.

    I will see if I can find the doc in Hawaii you are referring to. I have Kaiser and my doc there is beyond passive. He just tells me to watch my stress. Bull!!! The triggers are multi-fold and cascade over and over again, leaving me housebound for months. I get "well" but do not stay well and then am housebound again for months. I know that there should be a way to shorten the episodes, catch them early when the tingle is just, maybe in my hands.
    It goes within days to bedridden with extreme neuro problems, inability to walk (most likely same pathways that caused the CMV mono and Guillian Barre in late 70's).

    You cannot believe the number of docs I told the same thing to and they never ever believed me. So discouraging! My good doc retired in 2000. He did not understand the disease, but he loved me and would do anything to try and figure it out.

    Anyway, I am going to try the transfer Factor is got here from ProHealth and see what happens...still trying to figure out how much to take and when in day, right now I have inability to eat, nausea and extreme muscular fatigue.
    Real sick and in the 8th week.

    Thanks for talking with me,
    theatergirl
    [This Message was Edited on 07/14/2008]
  4. marti_zavala

    marti_zavala Member

    Okay, I'm a dummy. Ciguatera epitope not isotope (sheesh!)

    I just sent them an email to see if they are still accepting samples. I will post the info here. I was certain that I had the instructions in a word document but have been unable to find it.

    Marti


    * The Hokama Group at the University of Hawaii-Manoa investigating ciguatoxin is the only group known by CFS Phoenix to be directly engaged in research on a channelopathy in CFS. The information below is from The Pacific Research Center for Marine Biomedicine website at http://www.prcmb.hawaii.edu/)

    · The specificity of the test used to find the ciguatera epitope is being improved. Various techniques (NMR mass spectroscopy) are being used to further characterize ciguatoxin.
    · Ciguatera toxin will be added to sodium channels of cells to determine if it effects sodium channel function.
    · Perhaps most importantly for CFS patients the composition of the lipids the monoclonal antibody test picked up in CFS, hepatitis B and some cancer patients is being determined. These lipids will be added to sodium channels on cells to determine if they effect sodium channel functioning.
    · Lastly, in an attempt to determine where the lipids are coming from, liver cells will be exposed to ciguatoxin, and then monitored to determine if they are the site of lipid manufacture.
    The Hokama group's most recent report to the NSF stated their purification of the ciguatera epitope has enabled them to resolve 2/3rds of the indeterminate results, and that the source of the sodium channel disruption due to ciguatoxin has been identified. The antibody test formerly used latched onto a part of the toxin that was not involved in sodium channel disruption. A new antibody test presumably has been or will be created.



    Ciguatoxin – greatly increased levels of the ciguatoxin epitope, a marker of altered sodium channel activity, in most CFS patients provide the best evidence yet a (sodium) channelopathy occurs in CFS. Whether these findings reflect a chronic disease process or something more specific to CFS is unclear but research, thankfully, is underway to elucidate the intersection between CFS and ciguatera (Pearn 2001, Hokama et .al. 2002, 2003a/b).



  5. charming

    charming New Member

    My job just dropped kaiser as one of the choices for health care and you do know you can go online to kaiser permemente and log on to view all your test results and blood work and email your doctor and make appointments and refill prescriptions with out ever leaving your house or be put on hold.I start seeing my new doctor next week,Heres a what to look for to see if your blood work is in good standing Comprhensive metabolic panel look at your ALT, AST,Protein and if your AST is high and your ALT is abnormal and your protein is high then contact your doctor and ask questions about it.
    [This Message was Edited on 07/14/2008]
  6. findmind

    findmind New Member

    You can go to ncf-net.org and see if they are still offering the test.

    They are good about answering emails if you need to do that.

    immed.org is the Garth Nicolson lab that tests for stealth viruses, with specific instructions what to take for them. Your dr. might recogize his name, he is very famous

    findmind