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My recent visit with Dr Montoya

Discussion in 'ME/CFS Doctors' started by Butydoc, Feb 2, 2015.

  1. Butydoc

    Butydoc President

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    A brief time line. I started seeing Dr Montoya in 2007 where I was treated with Valcyte. After 7 months, I quit the drug because it was making me worse. I believe this was a result of starting with too high a dose and never recovered until I stopped the drug. I improved enough to return to work part time, but in 2012 my health started to deteriorate. I saw Montoya who started me on Valcyte and colchicine. He also started me on doxycycline at my request (high titers of m.pneumonia). I improved to function at about 75%. I stopped taking all of these drugs after about 1 1/2 years because of increase liver enzymes and decrease creatinine clearance (a measure of renal function). My numbers returned to normal and I felt fairly well for about 6mo, then again started to deteriorate.

    I saw Dr Montoya on Jan 13th, 2015. He still believes that inflammation is an extremely important aspect of CFS/ME. He believes that Valcyte is a potent antiviral and anti inflammatory drug. His new recommendation for me was to start Valcyte as a suppressing dose of 450mg daily which should be acting as an anti inflammatory drug, acyclovir 800mg twice daily as an antiviral drug and celebrex as an anti inflammatory drug. We spoke a bit about the Japanese study that showed brain inflammation. He appeared very excited about the direction of this research. I believe he feels that the anti inflammatory properties of Valcyte may be its major benefit. It has been approximately three weeks since I started this new therapy. I have improved relatively dramatically. I've grained weight and muscle mass, something I haven't been able to do in 11 years. I feel pretty good but not normal. I'm still improving. I might mention, my original test in 2007 showed high Igg titers of EBV, HHV6 and M.pneumonia.

    Dr. Montoya now has an assistant whose primary job is to write grants. He expects to get between 10-20 million dollars this year. Unfortunately I didn't have much time to speak with him since he was off to a meeting immediately after my consultation. He was very kind to see me at 8:30am that morning.

    Best,
    Gary
     
  2. Kati

    Kati Patient in training

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    Do you mean get 10-20 millions from NIH?
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    Does Celebrex cross the BB barrier? Also, in what circumstances might we be concerned about the cardiac risks of Celebrex?

    This is absolutely wonderful news! Thanks so much for sharing it.

    Sushi
     
  4. IreneF

    IreneF Senior Member

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    How are you tolerating the Celebrex? Isn't it a NSAID? My stomach got screwed up by Voltoran.

    I also get high titers of M. pneumoniae, and have cleared it with abs, but I didn't feel any better because of it.

    Currently on Valcyte and colchicine. Not seeing Montoya until May. What's been helping me the most is aggressive rest. I sleep as much as possible and don't push myself at all. I spend most of my time on the couch. I'm still housebound but I have much less brain fog and pain, and my sleep cycles are stabilizing.
     
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  5. SOC

    SOC Senior Member

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    I agree that aggressive rest is critical. In my experience, aggressive rest without other treatments only stabilized my condition, but didn't improve it. However, the treatments (AVs and others) didn't work well or quickly without the addition of aggressive rest. I suppose our bodies can't heal, or fight, or whatever, while we're still pushing them beyond their limits -- no matter how good the therapy.
     
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  6. Butydoc

    Butydoc President

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    Hi Kati,

    Not sure where his funding sources are coming from.

    Best,
    Gary
    Hi Sushi,

    Apparently NSAID do cross the BB barrier and suppress microglial cells.
    Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation
    all NSAID probably have some cardiac risk similar to Celebrex. Montoya started me on 50mg bid which is a small dose. Hopefully this lower dose will decrease the likelihood of developing the potential cardiac complication. I consider this a acceptable risk considering for what I'm being treated.

    Best,
    Gary
     
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  7. Butydoc

    Butydoc President

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    Hi Irene,

    Yes, Celebrex is a NSAID. Unlike advil, it is a selective cox2 inhibitor. It should have lesser GI issue compared to non selective cox inhibitors. I have had no GI issues so far. Hopefully the lower dose will prevent this problem.

    Best,
    Gary
     
    Sushi likes this.
  8. Wally

    Wally Senior Member

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    NK17, catly and Butydoc like this.
  9. Butydoc

    Butydoc President

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    Daffodil likes this.
  10. Daffodil

    Daffodil Senior Member

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    a lot of specialists including celebrex in the regimen these days.

    so happy you are feeling better, gary!
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Butydoc thank you for posting all of this and for your overall generosity of spirit. Your improvements have been very motivating for me and I am so glad you continue to feel better.
     
  12. NK17

    NK17 Senior Member

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    Thanks @Butydoc for updating us.
    The expected grants news is really wonderful and I'm positive Dr. Montoya's group will put every penny to work.
    Do you think Stanford might be the first clinic to open a Center of Excellence?
    I'm currently on Valcyte and Famvir, but not feeling any improvement. What I really experience more and more is an overall inflammatory state.
     
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  13. Folk

    Folk Senior Member

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    What's doctor Montoya's toughts on lyme and coinfections?

    I never hear him talking abiout it, or prescribing long term atnibiotics...
     
  14. IreneF

    IreneF Senior Member

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    He's never mentioned Lyme to me. I think he tests new patients for it as an exclusionary diagnosis, but I don't think he treats it.
     
  15. ebethc

    ebethc Senior Member

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    Hi Gary - is celebrex still helping you? any GI issues? any other side effects?

    I've been avoiding celebrex because it is a NSAID and I also read that it can cause weight gain, but then I read your post... I'm hopeful because if I'm not in pain I'm fairly functional. Let me know how it's working for you.

    thanks!
     
    Last edited: Jun 20, 2015

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