A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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New doc at Stanford

Discussion in 'ME/CFS Doctors' started by IreneF, Jul 5, 2017.

  1. IreneF

    IreneF Senior Member

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    I had to change an appointment at Stanford because the nurse practioner I was supposed to see retired. There was an opening to see an actual physician, so I took it. Saw him on Monday. His name is Hector Bonilla and he grew up very close to Dr. Montoya. He's harder to understand than Montoya but is like him in other ways. He thinks CFS/ME is caused by a viral infection of the mitochondria.

    His recommendations:

    200 mg co-enzyme Q twice a day on top of everything else

    No d-ribose. He says the evidence isn't there.

    Curcurmin. Don't remember the amount but I'm skeptical of the usefulness of the stuff.

    Mediterranean diet. Lots of olive oil, walnuts, greens. No red meat. (The no red meat might be hard because my husband likes it.) I eat like that as much as I can anyway.

    Re-start Valcyte (if my insurance will pay for it).

    75-100 g dark chocolate a day (about one large bar) I am having a hard time eating that much.

    De-stress. I think he would recommend meditation. I told him I spend a lot of time with my cat, and she's a destresser. He thinks the reason I've been in a prolonged crash is that a close friend of mine died in Feb.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @IreneF Good to know that there is a new doctor there. I hope he works out for you. I'd choose dark chocolate over Valcyte any day though! But if it works....
     
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  3. IreneF

    IreneF Senior Member

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    I prefer Montoya. I've been seeing him for about 9-10 years.
     
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  4. Daffodil

    Daffodil Senior Member

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    @IreneF you were told to eat dark chocolate? wow lol. so do you have to eat it bitter or can there be sugar?

    i miss chocolate A LOT. a food tolerance test showed i should not eat it. i used to cheat but now havent had it in a long while.

    do you feel that montoya has helped you feel better after this long seeing him?
     
  5. IreneF

    IreneF Senior Member

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    It's supposed to be dark, not bitter. Sugar isn't very good for you, obviously, but bitter or baking chocolate is inedible.

    Nothing I've tried has made a huge difference, including rituximab. I was better for 2-3 months until Feb. I was grocery shopping and cooking and even went to a movie. Now I can cook only about every week or two.

    There is no cure. All a person can hope for small, incremental improvements.
     
  6. Alvin2

    Alvin2 Senior Member

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    I may be in the minority here but i don't like these recommendations or theory.
    The viral infection of mitochondria has some backing but so does many other theories.
    Q10 has been found to be low, it may help some people but i assume the point is because of the mitochondrial theory.
    Ribose is harmless to most people and i have found personally it does a fair amount more then the Q10. Its expensive though. :bang-head:
    Curcumin is riskier then people like to believe, it can cause some problems, but does he have real evidence for it, or is it based on the mito virus theory?
    The diet has little scientific backing in ME/CFS, i'm not saying its a bad diet, though i would go for some meat, vegetables and some olive oil/nuts.
    Valcyte is a drug i have no knowledge of so i can't comment.
    Dark chocolate seems to out of left field.
     
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  7. Daffodil

    Daffodil Senior Member

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    @IreneF not true! you need to see DeMeirleir. i was almost dead....i mean could barely turn over in bed. now i can walk 2 miles, cook, clean etc. (not all on the same day though lol) he uses antibiotics..believes its intracellular bacteria...and has a very promising new treatment coming up too.

    i thought chocolate without sugar is always insanely bitter?
     
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  8. Daffodil

    Daffodil Senior Member

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    @Alvin2 i have to agree. this treatment sounds non medical
     
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  9. IreneF

    IreneF Senior Member

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    Yes, choc. w/o sugar is bitter.
     
  10. Alvin2

    Alvin2 Senior Member

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    Indeed, if the pyruvate dehydrogenase theory is correct then more meat is probably good, more amino acids for fuel instead of less.
     
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  11. IreneF

    IreneF Senior Member

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    Dark chocolate is high in phenolic compounds that act as anti-inflammatories:
    https://www.ncbi.nlm.nih.gov/pubmed/27070643

    Montoya believes ME/CFS is an inflammatory disease. He's referred me to Stanford's amyloid clinic based on elevated antibody light chains. Amyloidosis can be a consequence of long-term inflammation.

    There's been a lot of research on curcurmin, but nothing conclusive.

    The Mediterranean diet is considered anti-inflammatory.

    Valcyte (valgancyclovir) is an antiviral that also has anti-inflammatory action in the nerrous system.
     
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  12. IreneF

    IreneF Senior Member

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    It's based on the inflammatory nature of red meat, not on protein content.
     
  13. Alvin2

    Alvin2 Senior Member

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    So the theory behind these treatments is to load you up on anti inflammatories.
    Let us know how it works out.
     
  14. IreneF

    IreneF Senior Member

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  15. Kati

    Kati Patient in training

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    If everybody ate chocolate and tried Co-Q -10 already! :bang-head::bang-head::bang-head:
    I am so over these kinds of recommendations. This is not medicine.
     
  16. Daffodil

    Daffodil Senior Member

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    @IreneF it is an inflammatory disease but the signals come from the gut. Does montoya even check gut flora?

    I never even thought of amyloidosis. I am worried now! I hope you do not have it. I guess we are all at risk for that with all the inflammation...

    xox
     
  17. IreneF

    IreneF Senior Member

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    It doesn't hurt, except for the cost. And I have other signs of inflammatory problems. All I can hope for is a small improvement, really. I don't think anyone expects more than that.
    I'd like to get back to where I was in Jan.

    Really, the Valcyte is a much bigger deal, esp. as it's a strain on my liver and kidneys.
    I don't know what he checks now. He's got years of my records. I participated in the Columbia microbiome study thru Stanford, so he certainly is aware of gut stuff. He's also very conservative.

    I'm going to the Stanford amyloid center in about two weeks. I'm thinking that the elevated light chains are due to an inherited predisposition to multiple myeloma. My dad died of it and there's a genetic component. Amyloidosis is difficult to diagnose and they may want to take a belly fat biopsy and bone marrow sample. I probably won't be able to afford that until I can get better insurance coverage.

    Anyway, I will post about my appt. over there. I'll ask if they think CFS/ME is a risk factor.
     
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  18. Barry53

    Barry53 Senior Member

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    My wife homed in on the dark chocolate thing while ago. Here in the UK we tend to call it plain chocolate. i.e. Chocolate without any milk in it. When my wife is in energy-gone mode, she craves sweet stuff as an energy boost, but tries to control this craving because of normal health concerns, as well as it giving her indigestion. But she has found plain chocolate much easier to digest. Hard to tell though whether any perceived energy boost (or maybe just feeling slightly better is more accurate to say) is real or placebo.
     
  19. IreneF

    IreneF Senior Member

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    Well really I think it's like following a healthy diet overall--you may not feel better overnight (altho I feel better when I eat better)--but you improve your chances of staying as healthy as possible.
     
  20. Daffodil

    Daffodil Senior Member

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    @IreneF please keep us posted on what happens at the amyloid clinic!

    I took valcyte for yrs, even after my bloodwork showed I should stop. didn't help. hope it helps you.
     

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