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Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

Discussion in 'General Treatment' started by Jesse2233, Nov 26, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    A friend and current Stanford patient shared this with me.

    Thought this might be helpful to those interested but unable to attend their clinic due to cost or location.

    As always discuss w/ your own doctor.

    Note: not all of these drugs are prescribed for every patient. These are menu options so to speak.

    Antiviral
    • Acyclovir
    • Famiclovir
    • Valacyclovir (500mg, 2x daily)
    • Valganciclovir
    • Fluoxetine (Enterovirus)
    NK cells / inflammation
    • Low dose naltrexone (1-10mg)
    Diet / anti-inflammation
    • Mediterranean diet (fruits, vegetables, whole grains, legumes and olive oil. Meats: fish and poultry over red meat).
    Supplements
    • Turmeric / meriva (500 mg, 2x daily), ginger, green tea, b12, CoQ10, dark chocolate
    Anti-inflammatory drugs
    • Hydroxychloroquine (200mg, 2x daily)
    • Colchicine
    Lifestyle
    • Rest aggressively, never crash, expend 50% of available energy, resting means no cognitive or physical activity

    Tagging @RYO as he was interested in Hydroxychloroquine dose
     
    Last edited: Nov 26, 2017
  2. boombachi

    boombachi Senior Member

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    Thanks for posting.
     
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  3. MartinDH

    MartinDH Senior Member

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    Just lie there and pretend to be dead...
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    Possum Protocol
     
  5. geraldt52

    geraldt52 Senior Member

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    and try not to disturb/annoy the healthy people...
     
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  6. jpcv

    jpcv Senior Member

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    I think that these medications and orientations make sense , the antiviral treatment is open to discussion but it´s acceptable.
     
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  7. Diwi9

    Diwi9 Senior Member

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    @Jesse2233 - When I tested for NK function with Quest, I believe I was an 8 or 9, just above the cutoff. I had been on LDN for a few months and am curious how LDN affects NK function, if you know?
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    My understanding is LDN improves function, but I haven't seen studies substantiating that
     
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  9. Learner1

    Learner1 Professional Patient

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    Thanks for posting - I've been on their wait list for 15 months and its good to know what we're missing...

    So, do bacterial infections not exist in their world? Or autoimmunity? Or underactive immune function?
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    Aroa, Diwi9 and Learner1 like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    Not only is there no mention of bacterial infection or autoimmunity but they seem to recommend a "one size fits all" diet which would never work for a mast cell patient or anyone with food allergies/sensitivities. I have never been to the Stanford ME/CFS Clinic but I went to another Stanford Clinic that was sorely disappointing to put it politely.
     
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  12. Diwi9

    Diwi9 Senior Member

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    You're a rockstar. Thank you.
     
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  13. JES

    JES Senior Member

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    It is very interested that they are experimenting with Fluoxetine, it's a medication I tried already two years ago when I read it had anti-enteroviral effects. With the calculations that @Hip provided me, it turned out that even a small dosage of Fluoxetine, smaller than the 20 mg starting dosage that is used for depression, should be enough to reach effective antiviral concentrations in the brain.

    To my disappointment there was no significant improvement to any of my CFS/ME symptoms from Fluoxetine. So that pretty much rules out a CVB3/CVB4 infection in the brain for my side. The conclusion I made from this is that either the enterovirus infection that causes the symptoms is rampant elsewhere in the body, where Fluoxetine achieves a much lower concentration, or I don't have any CVB infection at all and my CFS/ME symptoms are caused by something else. I have yet to read from anyone with CFS/ME that has had success with Fluoxetine and I'm aware of at least a couple of persons who have tried it.
     
    Last edited: Nov 27, 2017
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  14. Hip

    Hip Senior Member

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    I was looking more closely at the anti-enteroviral mechanism of fluoxetine, and it occurred to me that fluoxetine's mechanism may not work for non-cytolytic enterovirus infections. In fact, fluoxetine might even promote non-cytolytic infections.

    So given that the chronic enterovirus infections found in ME/CFS patients involve a non-cytolytic infection, as well as a normal lytic enterovirus infection, this could explain why fluoxetine may not help. Fluoxetine may work for the lytic infection, but not for the tricky non-cytolytic infection.



    The technical details of why I think fluoxetine won't work for non-cytolytic enterovirus infections are as follows (bear in mind that I am not a virology expert, so this is just my own interpretation, and I may be wrong):

    This study says that fluoxetine inhibits the 2C viral protein made by enterovirus. This viral protein is important for normal lytic replication. This paper explains a bit more about the 2C protein: it says that enteroviral 2C protein "may be crucial for the synthesis of positive-strand RNA from the negative-strand RNA template".

    The way enterovirus normally replicates is by making a small number of negative-sense viral RNA strands, containing the full the viral genome. Each negative RNA strand acts a template or "stamp", and this strand is able to create multiple positive RNA strand copies. These multiple positive RNA strands are then packed into new viral shells to make new viral particles. This is the normal lytic virus replication cycle.


    In normal lytic enterovirus infections, you find that each single negative RNA strand is able to create around 100 positive RNA strands.

    However, in non-cytolytic enterovirus infections, something goes wrong, and the negative RNA strand template is unable to make lots of positive RNA strands, because something blocks the production of positive strands. When you get this shortage of positive RNA strands, that's how a non-cytolytic infection arises (I won't explain the details here). Thus when something blocks the normal production of hundreds of positive strands in a lytic infection, that lytic infection is converted into a non-cytolytic infection.


    So if we now go back to fluoxetine, we see that the 2C protein "may be crucial for the synthesis of positive-strand RNA from the negative-strand RNA template". Thus inhibiting this 2C protein will block the production of positive RNA strands, and is this way, may turn a lytic infection into a non-cytolytic infection. So fluoxetine might even increase levels of non-cytolytic infection.

    And for existing non-cytolytic infection, fluoxetine may not have any antiviral effect at all, because as explained, in non-cytolytic infections, positive RNA strand production is already blocked, so fluoxetine's positive strand-blocking effects will be superfluous and ineffectual in non-cytolytic infections.
     
    Last edited: Nov 28, 2017
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  15. wastwater

    wastwater Senior Member

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    I can imagine psycs chuckling saying get em on Prozac and tell them it’s for enterovirus if that’s what they need to hear
     
  16. JAH

    JAH Senior Member

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    I’ve been tested for CPN, but I can’t remember if I was given antibiotics. Test has to be clear positive. I’ve been given antibiotics for SIBO.

    They test for immune dysfunction, not sure if Montoya looks at auto immune. I was tested for auto immune markers by a neurologist referred by Dr. Montoya. (I’m too tired to look back at all my Stanford tests for details)

    Testing and treating MCAS is a big miss. Not sure if Dr. Montoya thinks it’s outside of his expertise (infectious disease) but they should absolutely look at it. Maybe one of his specialists treats it, but it hasn’t come up for me.

    No one has ever recommend a “CFS”diet to me. (Not questioning anyone’s experience! Just giving my own)

    I think their general approach is to look for and treat viruses and inflammation. You might remember Dr. Montoya’s cytokine study.

    JAH
     
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  17. Learner1

    Learner1 Professional Patient

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    Clear positive??

    CPN is difficult to get rid of. It takes at least a macrolide and rifampin over time to get rid of it. Its a bad bug, robs us of ATP and B vitamins, and can cause other serious health problems including cardiovascular disease and MS.
    This is highly frustrating. Stovepipe medicine is not in our best interests... we need to be looked at from a holistic point of view.

    I saw an immunologist who was interested in my underactive immune system, but told me to see an infectious disease specialist if I could get a culture of any of my infections... CPN is acellular and in my liver, not sure how to get a culture of that. Anyway, I saw an infectious disease doc who tested me for syphilis (which I had no reason to believe I had) and refused help with the infections I do have.

    Then, the immunologist recommended seeing a rheumatologist for my autoimmune issues. I'd already seen one, who sent me to a neurologist who did an MRI and said I don't have MS, a liver doctor who told me no one gets infections in their liver and told me to stop taking nutritional supplements and tried hard selling me a colonoscopy as he owns the machine, and then when I refused to see her favorite endocrinologist to look at why I take thyroid hormone and hydrocortisone, which are both managed very well by my naturopathic doctor, she fired me as a patient, without finding the auto immune problems my ME/CFS doctor found.

    I'm finding it very expensive and time consuming to go on wild goose chases by doctors who are either too narrow in their focus or unwilling to look at us holistically.

    Seems to me either an immunologist or an infectious disease doc should be able to look for chronic infections, delve into the state of our immune sysyem, whether underactive or whether an infection has provoked autoimmunity, and be able to devise a comprehensive treatment plan.

    I get tired of knowing more than the doctor does on these topics and I didn't go to med school... Surely with 8 years more of medical training and years of experience treating patients, they ought to have a leg up on treating us, without us having to spoon feed them research articles or going on a wild goose chase to a bunch of other specialists...

    Managing our health by committee doesn't lead to efficient care, it leads to us trying to coordinate a bunch of specialists with their own ideas and manage communications in fits and starts...
     
    Last edited: Nov 28, 2017
  18. JAH

    JAH Senior Member

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    I hear what your saying.

    Just about Stanford= I did have a “comprehensive treatment plan” for infections, it just didn’t work. Also Dr. Montoya is really hemmed in by Stanford, and has to be extremely conservative. Seeing specialists there is bureaucratic and exhausting, but you can get a ton of testing- if that’s what you want-that’s covered by insurance.

    I think a private solo practitioner is a better choice for us, because he or she can look at everything, look holistically, and try a lot of different approaches. But those docs are expensive and most don’t take insurance.

    And the real reality- you see the “best” docs, the ones people love on forums, work at the best hospitals, cost the most money, order all the tests, and it still might not do a damn thing.
     
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  19. Learner1

    Learner1 Professional Patient

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    Perhaps it wasn't comprehensive enough?

    Seems like we need more doctors trained in how to deal with all of us. The value of the doctor who is holistic in how they approach our many issues is that we can get further ahead faster. ;)
     
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  20. Suffering Succotash

    Suffering Succotash

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    <<Also Dr. Montoya is really hemmed in by Stanford, and has to be extremely conservative. Seeing specialists there is bureaucratic and exhausting, but you can get a ton of testing- if that’s what you want-that’s covered by insurance.>>

    Montoya is hemmed in by his research schedule and frequent sabbaticals. He actually pays very little attention to patients, sees them once a year. Had terrible followup with me, forgot to do 75% of the things he said he'd do and then wouldn't respond to messages or emails. Bonilla is inexperienced.

    For these reasons, I think this next paragraph is what's best:

    <<I think a private solo practitioner is a better choice for us, because he or she can look at everything, look holistically, and try a lot of different approaches. But those docs are expensive and most don’t take insurance.>>
     

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