Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Questions for Dr Montoya

Discussion in 'General ME/CFS Discussion' started by eljefe19, Sep 8, 2016.

  1. eljefe19

    eljefe19

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    Hey guys,
    I'm seeing Dr Montoya next Monday. Does anyone have any questions you would like me to ask on behalf of the community?
    Let me know!
     
    Groggy Doggy, actup, merylg and 3 others like this.
  2. msf

    msf Senior Member

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    Yes, when is his and Lipkin´s pathogen study going to be published? He´s been promising exciting results for over a year!
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    Does he see any treatment possibilities coming down the pipe in light of the Naviaux study?
     
  4. andrew p

    andrew p

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    With regards to the Naviaux study, it's suggested that antivirals should not been taken as long term use can inhibit mitochondria. They don't mention valtrex or valctye. What are his views on potential damage to the mitochondria from use of valtrex or valctye.

    It would be awful to find that there is a potential cure in the future, but due to long term use of antivirals the mitochondria are irreparably damaged and so those that took them are left without a long term cure.
     
  5. cman89

    cman89 Senior Member

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    I wonder how much could be saved by concurrent use of mito support supplements? Whitney Defoe was even reported to have SNP's that are known to affect mito health, so supplementing would make sense anyway
     
    actup likes this.
  6. Sushi

    Sushi Senior Member Albuquerque

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    There has been a lot of discussion of this and, as I remember, most found that it either had no effect or a negative effect. For me, no effect. Perhaps that button has to be turned off first. Another question for Dr. M!
     
    actup likes this.
  7. cman89

    cman89 Senior Member

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    No effect unless immune system or pathogens are lifted, but it may keep one in state, rather than inducing damage. Unless one is correcting an SNP, Methylation is really for detox and for keeping one in health. Its helped me, but mainly by keeping me in state...
     
    actup likes this.
  8. halcyon

    halcyon Senior Member

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    I'd also like to know about this, as well as when he will publish the cytokine data he showed at the 2014 IACFS/ME conference.
     
    Last edited: Sep 8, 2016
    Gingergrrl likes this.
  9. Groggy Doggy

    Groggy Doggy Senior Member

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    This is great example of team work. Thank You!
     
    Gingergrrl and KristenSF like this.
  10. eljefe19

    eljefe19

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    No problem. I thought you guys would appreciate. Unfortunately I've just been told that Dr Montoya does not want to see me, he has decided to discharge me because I am "too aggressive."

    I will do my best to get in there and see him so I can be a voice for this community. The unfortunate truth is I've been mistreated by Stanford from day 1 and this is simply more of the same. I have only ever been "aggressive" because I am aggressively pursuing recovery . They simply are fragile egos and it doesn't do us sick patients any good. I'm sorry guys.
     
  11. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Let Dr. Montoya know that his assistants should be more responsive to inquiries and requests from patients.
     
  12. eljefe19

    eljefe19

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    This is the exact issue to which we had problems. I could not agree more.
     
  13. Groggy Doggy

    Groggy Doggy Senior Member

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    Oh no, so what options do you have now? Did he refer you to someone else?
     
    Gingergrrl likes this.
  14. eljefe19

    eljefe19

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    He wants to pass me off to someone else. I have suffered so much in the last year under his teams' care and the level of mistreatment has just been astounding. Somehow advocating for myself is too much for the fragile egos at Stanford. I think Dr Montoya has a lot of questions to answer about both his subpar treatments and the subpar treatment of his patients in general.
    I'm literally about to get on a plane for this appt. how after one year of languishing with his stupid Valcyte treatment, inadequate in so many ways, four days before I'm finally supposed to see Dr Montoya he drops me like this.
     
    Sidereal and Gingergrrl like this.
  15. Groggy Doggy

    Groggy Doggy Senior Member

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    So you will see a RN or PA at the clinic? I hope they don't refer you to The Integrative Medicine Center which in my sarcasm I refer to as the "Stanford Somotaform Center" since its ran by a psychiatrist who promotes psychobabble.
     
  16. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Hmm...

    Mindful Nourishment
    Forgive for Good Workshop
    Mindfulness Meditation Course
    Love Yourself: For Everyone Else's Sake
    Positive Psychology: The Pursuit of Happiness

    Well if it floats your boat it is all good. I have been there done that...
     
  17. Groggy Doggy

    Groggy Doggy Senior Member

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    It won't cure ME though :(
     
  18. wastwater

    wastwater Senior Member

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    I was going to say ask him if sv40 might be relevant still
     
  19. frog_in_the_fog

    frog_in_the_fog Test Subject

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    I remember going to an integrative medicine practitioner, and she would always do this prayer and put her hands on me before intravenously infusing me with some kind of magical concoction. I think it was just saline solution with vitamins, but I didn't actually know for sure. She did suggest I see a doctor for my hyperthyroid condition which was something that had put me in the hospital, but which was not actually disclosed to me by the hospital doctors at the time. So she did do something good for me even if she couldn't completely cure me.
     
    Groggy Doggy likes this.
  20. Gingergrrl

    Gingergrrl Senior Member

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    I am so sorry to hear this and I was also mistreated by Stanford although at another clinic (and have never seen Dr. Montoya or been to the ME/CFS clinic just to be clear). I am shocked but yet also not shocked that he could just "drop" you right before you are about to get on a plane for your appt! This is actually completely unethical unless he gave you some solid, valid referrals who can provide treatment to you instead. Did he do this? Please keep us posted, and it was so kind of you to offer to ask him our questions, but am now thinking you need to focus on yourself and getting answers for your treatment moving forward.
     

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