Discussion in 'Fibromyalgia Main Forum' started by deliarose, Jun 17, 2006.

  1. deliarose

    deliarose New Member

    I'm just wondering what pathogens you were both diagnosed with?

    It might give the rest of us a betetr understanding of your respective reocveries.

    Also, did you do PCR testing and did you repeat the tests, and if so, how often?

  2. deliarose

    deliarose New Member

  3. TwinMa

    TwinMa New Member

    Stormy is out of town until 6/22 and elsa hasn't been posting lately. Elsa hadn't posted since 5/13, but I see she did post yesterday. Hopefully, she'll see this. I miss her posts!
  4. deliarose

    deliarose New Member

    tnx.... i'll check back
  5. intensemom

    intensemom New Member

  6. elsa

    elsa New Member

    Hi Delia,

    I hope you are doing well. I have been on the quite side lately .... popping in and taking a look but not necessarily posting. I am flattered you thought of me.

    My monster pathogen was the all popular EBV. It has been a while since my initial testing occurred so my terminology may be off a bit.

    I had the usual testing one has, IE antibodies, etc for EBV
    and the numbers showed an off the charts measurement. With these results my PCP ordered a PCR specific to EBV.

    These really are helpful tests as they are extremely sensitive and allow detection of a target pathogen in a sample vs. just antibody testing. These tests are also supper fast and not that costly. Helpful in the beginning of the diagnostic phase.

    If you hold with Dr.Chaney's "Three Phases of CFIDS" and Dr. Bennett's (plus many others) definitions that our illnesses are cellular metabolic dysfunction and neuroendocrine diseases, then the actual viral infection may not matter beyond being the initiating factor it is for about 70% of CFIDS patients.

    What is of big importance is what steps are taken to "fix" the neuroendocrine problems. ( Cellular metabolic Dysfunction is directly related to hypothalamic injury. )

    As you are addressing the above mentioned, you should also find a method that suits your health-care philosophy to beat back the opportunistic infections that coincides with each of our particular CFIDS/FMS illnesses.

    I was lucky. I did not have multi-infections occurring like many here have to deal with. Also, I was diagnosed fairly quickly and started on valtrex within three weeks of telling my PCP my suspicions of having CFS/FMS. Not the case with too many of our members here .....

    After the diagnostic testing I really didn't have a whole lot of follow up pathogen testing. Our thinking was get the root causes under control, get the pathogens beaten back where they belong and devise a plan to maintain my health.

    I had a run of the mill EBV antibody test done once we suspected early remission. It showed what the majority of people's test would show ..... that I have come into contact with the EBV at some point in my life. That was good news for me.

    Valtrex, famvir, Transfer Factor, colostrum, whey protein concentrate, high doses Vitamin C (spread throughout the day), Vitamin E plus other anti-oxidants did an unbelievable job in addressing my EBV.

    All but the rx anti-virals (I didn't take this time) have helped since remission in keeping an average (relative, I know, lol) flu bout from sending me back to the CFIDS/FMS starter gate .... thank God above!!

    I hope you find this helpful. Quite wordy I know .... something I can't seem to get a handle on, lol. I will keep trying though!

    For what it is worth ..... Dr.'s Teitelbaum, Chaney, Lapp, Bennett, Holtorf and E.Vliet are excellent resources for mapping out a treatment strategy.

    So are Mikie and Stormy. You might want to add Mikie's name to the title as she is the Dr.Chaney expert and extremely knowledgeable on pathogenic infection.

    Between the three of us you will get a very well rounded view of treatment options as ours are all similar yet at places very different.

    My personal philosophy holds most closely to Dr.Teitelbaum and the FFC centers (Dr.Holtorf - original FFC Medical Director and still may be.) Dr.Teitelbaum has recently joined the FFC organization in a Medical Director capacity as well.

    That's pretty strong treatment ammunition for two diseases no one wanted to treat beyond handing out AD's, anti-inflammatories and referrals to the psych ward! (Laughing here ...)

    Reminder to all that the FFC and Teitelbaum treatments can be done on your own with your health-care prof. ..... as I did just that. The centers hadn't opened yet when I started my treatment.

    Thanks for the kind words ladies. They made my day a good one!

    Take care,

    [This Message was Edited on 06/19/2006]
  7. deliarose

    deliarose New Member

    thanks for the reply.

    Actually, just saw a new doc, and he Rx'd Valtrex, but I think he is of the same mind the specific antigen is not all that important...

    Interestingly, he seemed very interested in Xyrem. He pointed out that I don't get any stage IV sleep which is when the body's growth factor produces Igm (hope I'm getting these terms right).

    Seemed to think that drug would be worth trying.. but evidently, most insurance cos won't pay for it, without a diagnosis of narcolepsy.

    Anyway.. appreciate your feedback.