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Interesting visit with Dr Montoya

Discussion in 'ME/CFS Doctors' started by Butydoc, Feb 25, 2014.

  1. Butydoc

    Butydoc

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    Just spent some time this am with Dr Montoya. He now claims he can prove that inflammation is a major component of CFS. He hopes to have his results published before the Stanford symposium.

    The most interesting piece of new information was about the super cytokine Leptin. One of the professors at Stanford measured the cytokine level, including Leptin, daily on a large number of patients. He had them fill in a questioner about how they felt each day and then matched their blood work to the answers. What he found was that the Leptin levels would rise or fall consistent with the patients level of fatigue. Apparently Leptin is a pro inflammatory cytokine.

    Does this mean that Leptin can be used to monitor ones progress or aid in the diagnosis as a bio marker? Can manipulating Leptin be a potential treatment? Again, very interesting and exciting. This Leptin results may also suggest why diet may play a role in our disease.

    Also something interesting about Valcyte. Montoya claims he has strong evidence that validates Valcyte as an anti-inflammatory drug. He still believes that an infectious agent or other triggers such as chemical toxins may start the disease but inflammation is the common mediator of CSF. He believes many of his results are from the anti-inflammatory effects rather than the antiviral effects from Valcyte.

    Presently he is using colchicine as his first line anti-inflammatory drug with some very promising results. He still doesn't know if this is the best choice, but it is a good starting point.

    This visit he increased my dose of colchicine to 1.2mg/day. I'm much better since I started the Valcyte/colchicine regimen but still not normal. He increased the dose to see if I can increase my wellness to the point where my immune system reboots.

    Montoya also asked me to attend his symposium on March 19th. He felt my input as a patient and physician could help in the discussion section. He even offered to pay, which I declined. Very nice to know we have such a dedicated physician in our corner.

    Regards,
    Gary
    SDSue, Waverunner, shannah and 21 others like this.
  2. Ema

    Ema Senior Member

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    My leptin was high when I tested it. I'm sure this is a factor in metabolic issues for me as well.

    Interesting to know about its inflammatory properties as well.

    I have found some articles showing Wellbutrin to be an anti-inflammatory that may be useful in our population as well.

    To combat leptin resistance, Holtorf describes using a combo of Wellbutrin and naltrexone. I've always wondered if this would be a useful combo in ME/CFS too.
    Hanna likes this.
  3. rosie26

    rosie26 Senior Member

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    Excellent ! Thanks @Butydoc . Fab-u-lous. !!!
    Last edited: Feb 25, 2014
  4. Sasha

    Sasha Fine, thank you

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    Very interesting, @Butydoc! Congratulations on your improvement.

    Does Montoya only use Valcyte for patients with evidence of inflammation in blood tests? Would that be a high CRP level (sorry, I'm not a clinician)?
  5. Vegas

    Vegas Senior Member

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    Lipopolysaccharide causes a robust release of leptin. You cannot find a much more inflammatory substance. I suspect the release of leptin is in part counter-regulatory because LPS reduces appetite and leptin increases appetite. A tricky little way to restore glycogen and set in motion a glucocorticoid response. I don't think Leptin is necessarily a bad thing, it has a role in mitigating the effects of LPS. In other words, don't shoot the messenger, go after the real perpetrator.
    Ema and merylg like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thinking out aloud here but if valcyte works through anti inflammatory affects then it should work in more people and those with no active herpes infections.
    I also wonder if this reduction in inflammation is because it's actively treating viral infections and these viruses are causing this inflammation.
    SOC and Sushi like this.
  7. Sea

    Sea Senior Member

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    @Butydoc is this information some of what Dr Montoya did not want to be discussed openly before he has published his work? If it is I would prefer it be removed and we wait a little longer.
    SOC and rosie26 like this.
  8. bel canto

    bel canto Senior Member

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    The study described above (leptin-related) sounds like the one he released last year, where he followed ten patients by taking blood from each for 25 days, and having them do the journals. It was discussed here in this forum, but I think it was such a small study that it didn't do more than point the way to some additional research. I believe that he does also have some embargoed data that we will hopefully have access to soon.

    I don't know anything about the valcyte information that he's describing, but it surely is interesting.

    Sea, you have made a good point to remind us all to be careful with posting data that we shouldn't.
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  9. Butydoc

    Butydoc

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    Montoya claims that crp, highly selective crp and sed rate are generally normal even though other inflammatory markers are elevated. I don't know if he uses Valcyte strictly as a anti-inflammatory drug in some patients.

    Regards,
    Gary
    Last edited: Feb 26, 2014
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  10. Butydoc

    Butydoc

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    Hi Sea,
    I don't know if this is the information/ research that Dr.Montoya didn't want posted. I've told him in the past that I post some of the information on PR that we discuss during our consultation and he was ok with it. He did not in anyway forbid me from discussing this info with other people.

    Regards,
    Gary
    merylg and Sea like this.
  11. globalpilot

    globalpilot Senior Member

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    I'm certain Dr Montoya said in one of his talks that valcyte did not produce positive results in patients unless they had high antibody levels. This latest evidence regarding inflammation is very interesting but that statement is also playing in my mind. Maybe he will comment on this at the meeting. I hope so.
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  12. NK17

    NK17 Senior Member

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    Thank you Gary for sharing all these informations with us. I can't wait to read what Dr. Montoya has found and what he will publish, hopefully before March 19.

    In the meantime while waiting patiently, I have started the treatment with Valcyte, under the guide of Dr. Kogelnik (post graduate fellow of Prof. Montoya).

    I can report that my CRP and SED RATE have been low and stable for a long time and that I'm not surprised by the findings that Valcyte may function as anti-inflammatory. Other drugs such as ABX like azithromycin have proven to work as anti-inflammatory. The dose and the length of treatments is probably critical in order to quench the inflammation, probably driven by viruses, bacteria and toxins.

    I was recently talking to a liver specialist at Ucla and he stated that most blood panels run on PWME come back normal, he added that we don't know yet what to measure as a proof of a dysfunctional immune system and that he really hopes that Dr. Montoya has just found that.

    I'll finish quoting Albert Einstein: "Not everything that counts can be counted, and not everything that can be counted counts.", I'm sure we all agree that this is very much our case :).
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  13. globalpilot

    globalpilot Senior Member

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    Of cour
    I was thinking the 1-1.5 years of treatment on antivirals is needed to quench the inflammation long enough for tissue repair to happen.
  14. Firestormm

    Firestormm Guest

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    How is your ME following this lenght of time on Valcyte? Thanks :)
  15. Grigor

    Grigor

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    Dr. Montoya is a very cool guy . I wish we had him here in Amsterdam. Would love him to try things on me grrrr
  16. Butydoc

    Butydoc

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    I had to retire from my practice 1 1/2 years ago do to the severity of my symptoms. My orthostatic intolerance ( bp frequently in the 85 systolic range with dizzy spells), worsening of my brain fog and just generally feeling sick. I spent 50% of my time in bed.
    Fast foward to now, minimal OI, rare brain fog and increased ability to socialize. I'm now able to ski at least half days at an expert level without crashing. I don't spend any time in bed except to go to sleep. Definitely not completely well. I still crash if I over do it and still have sleep issues.

    Best,
    Gary
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  17. Grigor

    Grigor

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    That's really an amazing result . Wow.
  18. Valentijn

    Valentijn Activity Level: 3

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    KDM is pretty close by in Brussels :)
  19. Grigor

    Grigor

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    Too far for me for the moment and KDM is good but not very communicative let's say.
    Both are obviously good and for both I wish they were in Amsterdam ;-)

    Anyways on what dose did Dr. M. put you on?
  20. Butydoc

    Butydoc

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    Hi Grigor,

    I was treated for 7 months in 2007 with a starting doses 1800 mg/day for three weeks followed by 900mg daily. I was very sick from the medication and didn't improve until I was off Valcyte. This time around he started me at 225 mg/day and increased the dose over two months until I reached the therapeutic dose of 900 mg/day. Montoya no longer uses a high starting dose because of the number of severe bad reactions and generally treats for longer than 6 months. Probable 2 years for me. This time around I didn't suffer any down side from Valcyte with this slower protocol.
    Best,
    Gary
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