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Epstein–Barr virus infection induce chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by heapsreal, Aug 31, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is dr K considering antivirals for you while on ritux? I ask this as i heard him mention this as a theory.

    cheers!!!
  2. niall

    niall

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    Dr. Rey phoned my after I got home from the Ampligen treatment. She said there was a significant improvement in my viral antibody titers which were drawn on August 6th. I asked her why I was not feeling well even though I am improved from last year. She said that there are other viruses involved and the Ampligen causes my symptoms to become worse. She used a word like Hertz....something. She said she will not start the Famvir while I am on Ampligen because it will make me feel much worse. So the plan is to detoxify for month and then start Famvir at 125mg twice a day. I will know the full dosing protocol next week.
  3. madietodd

    madietodd Senior Member

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    She probably said "herx" http://en.wikipedia.org/wiki/Herxheimer_reaction.
  4. Jacque

    Jacque Senior Member

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    Yes he mentioned it and I am gonna bring it up on the 9th.... Stay tuned :)
    merylg and heapsreal like this.
  5. Jacque

    Jacque Senior Member

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  6. niall

    niall

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    Yes, thanks Jacque, that was the word Dr. Rey mentioned. How is your Lyme condition now?
  7. Jacque

    Jacque Senior Member

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    BAD.... very bad...as I cannot tolerate killing it off :mad:
  8. niall

    niall

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    Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
    The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
    Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

    Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
    August59 and SOC like this.
  9. niall

    niall

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    Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
    The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
    Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

    Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
    heapsreal and Jacque like this.
  10. niall

    niall

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    Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows.
    The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody.
    Then the HHV-6 IgG went from a positive titer of 1:160, to a "mildly activated" positive titer of 1:80.

    Dr. Rey said she will start me on Famvir after a month of detoxification from the Ampligen. The dosing is less than I had anticipated...250mg, take 1/2 a tab once a day for two weeks. Then take 250 mg, one tablet once a day for six months. Repeat blood work in six months
    heapsreal likes this.
  11. Jacque

    Jacque Senior Member

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    Keep us posted... so did you also notice an improvement in symptoms along with an improvement in labs?
  12. Jacque

    Jacque Senior Member

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    Good stuff heaps!! When you say you don't have that EBV feeling...can you tell me what your EBV symptoms are? Were they flu like or ?? And do you suffer with a lot of nerve,muscle, etc pain?
  13. Jacque

    Jacque Senior Member

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    I wish I knew whether the Viral infections I have EBV ... HHV6... HSV1 and 2 are what is causing the intense pain I experience or is it Lyme? I just wish I knew the answer to that... I guess I will get it with the Rituxan and hopefully eventually the Antivirals...I those don't help the pain I will know it is likely that nasty bacteria...
    Xandoff likes this.
  14. Marg

    Marg Senior Member

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    Sounds abut right to me Alex, when can I make an appointment? I was tested for Lyme but I am not sure if the test was good enough, it was in the 90's.

    I was very surprised to learn from a friend whose whole family has Lyme that a person does not have to be bitten by a tick. It can be passed from mother to child and husband and wife. She tested and then the doctor suggested the whole family since ervyone was sick to a certain degree. She had to worst case though and is much better after 3 years of treatment..a little of everything ever used.
  15. niall

    niall

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    Yes, I feel less sick, somewhat more like normal on a day to day basis and I can work about the house for five to six or seven hours a day with a nap or two in between. I still have a sore throat, muscle pain (although less) and still must be careful about not over extending myself. These symptoms may subside more when I'm off the Ampligen.
  16. niall

    niall

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    Jacque, how can you contemplate taking another antiviral while you are on the Rituximab and feeling so bad?
  17. Ecoclimber

    Ecoclimber Senior Member

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    merylg, jeffrez and GaryK like this.
  18. Jacque

    Jacque Senior Member

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    I am really not feeling all that bad... no worse than before the Rituxan... I would say my energy and flu symptoms are 50-75% better but I can hardly enjoy it bc of the constant pain in joints, muscles, etc... Dr. Kogelnik did mention to me that he may consider Anti Virals in Addition to the Rituxan when I first started treatment... so will see what he thinks when I see him on the 9th.
    merylg likes this.
  19. GaryK

    GaryK

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    Thanks Eco a very interesting read!
  20. Xandoff

    Xandoff Michael

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    Jacgue,
    I have been in pain for eight years. My belief is that what ever the illness is that we have (ME-CFS) is of viral nature and throws are entire system off. The sytems that elegantly regulate our immune system are "off". I have degenerative disc disease and other neck and spine problems that might not humble a "healthy" person" but with our un-balanced chemmistry I think our voulme control that regulates our pain gets stuck and amplified. I feel like I have a migraine of the spine. I went off all pain meds in December 2011 and life is a bear. Pain colors everything I do. You can look at my home page to see all the viral sub infections I tested for postive for. All the usual culprits, EBV, CMV, etc etc etc etc. I hope you feel better. I have had 15 injections of GcMAF once a week. I also take Low dose naltraxone for pain and it does help. All my best to you J!

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