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Dr Montoya and Valcyte

Discussion in 'ME/CFS Doctors' started by Butydoc, Mar 4, 2013.

  1. Butydoc

    Butydoc

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    Just finished see Dr Montoya this morning. A very interesting visit. It is note worthy that I was treated by him in 2007 with Valcyte. He began with the usual loading dose of 1800 mg/day for three weeks followed by the therapeutic dose of 900 mg/day. Like many who reported their experience with Valcyte, I was very ill from the side effects of the drug for the 7 months of treatment. Recently my symptoms have worsened and I began another round of Valcyte. Dr Montoya has changed his protocol for all patients and no longer uses the loading dose protocol. He starts on a low dose and works up to the therapeutic dose. He claims patients tolerate this schedule much better without compromising the results.

    His present belief is that cfids is caused by a genetic predisposition to immune dysfunction that is triggered by a viral infection. He also believes that herpe viruses are responsible for the subset of patients with mostly cns symptoms.

    He strongly believes that inflammation (probable cytokines) are responsible for the subjective symptoms. He claims Valcyte or other antivirals are part of the puzzle and anti-inflammatory drugs is probable the other piece.
    This is why he believes Retuximab improves some patients. He is now adding colchicine to his antiviral regimen with good success. He feels that he may need to use other drugs like methotrexate or Retuximab if the lesser dangerous drug colchicine is not effective.

    He is working with Dr Lipkin on deep sequencing to look for HHV6,7,8 and other novel viruses.

    Starting next year, cfids will be taught to the medical students at Stanford as a medical disease. In his experence 85% of doctors still consider cfids a psychiatric disorder. He hopes to dispel this myth.

    Gary
    Xandoff, Kati, merylg and 18 others like this.
  2. Sasha

    Sasha Fine, thank you

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    That's extremely interesting, Gary - thanks for posting. I've just found my hhv-6 titres are very high and I'm trying to get Valcyte here in the UK, on the NHS.

    I'm glad to hear Dr Lipkin is including hhv-6 in his study. A major study like that could have a big impact internationally on treatment in a way that the small studies and chart reviews done on hhv-6 in ME/CFS haven't.
    merylg, vli and ukxmrv like this.
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    Gary- Thanks for your great Post. However, Anything that made me sicker that long- would not work for me.
    I could not tolerate anything that did not give me some relief. I hope it works for you. Mine started with a viral condition. However, years ago they gave me Gamma Globulin when they were doing trials in research from a Infectious Disease Dr. I improved or started to improve in 3 weeks. Frankly if it is making you that sick I would think they would lower the dosage or strength. I think it is wonderful that they are going to start teaching CFIDS in schools. have CFS/ME DD/EBV/CMV. The RBV and CMV are not reactivated . I think it is because of the Gamma Globulin. Who knows.
    I was infected over 20 years ago.

    Best of luck to you and I hope you start feeling better soon..

    San Diego #1
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    colchicine are u now using this med for inflammation. I would be interested to hear if others have used it for this same reason. Interesting thread.
  5. Sasha

    Sasha Fine, thank you

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    Sparrowhawk likes this.
  6. aquariusgirl

    aquariusgirl Senior Member

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    It inhibits mitosis. So that would be a negative for our community ....but anti inflammatory is good.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i read that it works on neutrophils, so im not sure how it would go with some of us with low neutrophils, something to look deeper into.

    Colchicine binds to proteins in the microtubules of neutrophils. Neutrophils are a type of white blood cell. By binding them, the neutrophils cannot migrate to the area of inflammatory response to uric acid crystal deposits. Colchicine has a suppressive effect that helps to decrease acute gout attacks, thereby relieving pain and discomfort associated with gout.
    http://arthritis.about.com/od/colchicine/a/gout_medication.htm
    SanDiego#1 likes this.
  8. RUkiddingME

    RUkiddingME Senior Member

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    Thanks for the update Gary! Also fantastic news about doctors finally learning about us in med school. It's about time!!! Yikes that colchecine sounds scary though..
    heapsreal likes this.
  9. lnester7

    lnester7 Seven

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    Does anybody knows which is the antiinflamatory drug been tested by Dr Elander?
  10. Oh man. This so sounds like me. History of immune related disorders on my fathers side of the family, also parents who both have a form of the herpes virus, so i wouldn't surprised if my immune system was somehow already sensitive to it.
  11. jsfm

    jsfm

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    Hi all, I just got a huge let down on Friday. Dr. Montoyas office put me on a 4 year waiting list to see him. I felt so terribly let down as I have been following his work since about 2007 and this was the first time I could get a referral to go see him.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What about dr lerner?
  13. Not be more of a downer but when i was put on the waiting list i was told it would be a year and a half. That was three years ago, i suggest finding another savvy doctor in the meantime, i did and am seeing some light at the end of this long depressing tunnel.
  14. jsfm

    jsfm

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    I would for sure be willing to go see Dr. Lerner, however based on his website I wasn't sure that he was still seeing patients.
  15. jsfm

    jsfm

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    I am not surprised, I am continued to look at other doctors I just don't know who to choose at this point. If I may ask who did you end up seeing?
  16. SOC

    SOC Moderator and Senior Member

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    What about Dr Kogelnik? He used to work with Dr Montoya and is using antivirals and other more progressive treatments... or so I hear.
    Marianarchy likes this.
  17. SOC

    SOC Moderator and Senior Member

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    I think he's still seeing patients, but if he prescribes antivirals he wants to see you every 4-6 weeks which would be quite a burden if you're in the Pacific NW.
  18. Marianarchy

    Marianarchy

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    I agree with SOC. When I couldn't get in to see Montoya, I called Dr. Kogelnik's office. He worked with Montoya at Stanford on the Valcyte study. His clinic, Open Medicine Institute is located in Mountain View. It only took me a few weeks to get an appointment. He does use progressive treatments like Valcyte and Rituximab. He is also trying to get funding to do a study on GcMAF.
    merylg, SanDiego#1 and heapsreal like this.
  19. vli

    vli

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    Freaking fantastic.
    Xandoff, merylg and Sasha like this.
  20. vli

    vli

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    ...does anyone know if that'd include Vistide?

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