International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

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

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

  1. Steve4Andrea

    Steve4Andrea

    Messages:
    38
    Likes:
    101
    pattismith likes this.
  2. LifeIsSweet

    LifeIsSweet

    Messages:
    53
    Likes:
    53
    I have Mycoplasma Pneumonaie and I was prescribed three months of antibiotics. I will go through those before I start my antivirals and LDN. I doubt though that 3 months dosage will do much good.
     
  3. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,930
    Likes:
    5,120
    Southern California
    Nope
     
  4. XenForo

    XenForo

    Messages:
    88
    Likes:
    232
    Wait, "nope" as in Montoya is no longer using Rapamune, or just no word on the status of Stanford's use of Sirolimus yet?
     
  5. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,930
    Likes:
    5,120
    Southern California
    No word. Sorry lol should’ve been more clear
     
  6. el_squared

    el_squared Senior Member

    Messages:
    104
    Likes:
    56
    Hi, I see Dr. Bonilla and before that I saw the nurse Jane Norris, at the Stanford clinic. I too am seeing the limitations of the clinic, and I have not improved. Do you know if any other CFS doctors in the Bay Area? I see a naturopath who is experienced in Lyme, but she doesn't seem to know much about ME/CFS.
     
    Suffering Succotash likes this.
  7. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,318
    Likes:
    3,981
    Pacific Northwest
    You might try Dr Chedda or Dr. Kaufman at the Center for Complex Diseases in Mountain View. I got in there and have been making progress over the past 8 months, while I'm still sitting on Montoya's waitlist at Stanford.

    They have a broader range of treatments available and customize their approach for each patient, and they're tied into the research through the new Stanford Center of Excellence.

    I also have an excellent naturopath who has helped me tremendously with HPA axis, nutrients, microbiome, detoxification, and mitochondrial support.

    Without one or the other I wouldn't have gotten this far.
     
  8. marlabal

    marlabal

    Messages:
    4
    Likes:
    7
    I have been seeing Dr Chheda in Mountain View and really like her. I haven't seen improvement yet, but she seems to be checking and trying most things I've seen on this forum. She is exppensive $450/visit, but if she can give me my life back, it will be worth it.
     
    Learner1 likes this.
  9. el_squared

    el_squared Senior Member

    Messages:
    104
    Likes:
    56
    That sounds great. Can you tell me more about the treatments that have worked for you?
     
  10. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,318
    Likes:
    3,981
    Pacific Northwest
    I've been on T3/T4, hydrocortisone, Valtrex, Valcyte, IVIG, medications, nutrients, and botanicals for MCAS, and IV rifampin, azithromycin and doxycycline. We're also looking at meds for hyperadrenergic POTS and possibly Rituximab (as I fit with the people they've seen respond).

    I've had a trend of steady improvement over the past 8 months, though its cyclical due to the IVIG cycle. I had the best day in 2 1/2 years on Friday, where I was active most of the day and felt normal, though I still have crashes, but they're not as bad as they were.
     
    Last edited: Feb 6, 2018
  11. JAH

    JAH Senior Member

    Messages:
    466
    Likes:
    537
    San Jose
    He does prescribe sirolimus.
     
  12. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,318
    Likes:
    3,981
    Pacific Northwest
    Sirolimus is an immunosuppressant. Exactly why is this a good idea?

    As a cancer survivor, stimulating mTOR doesn't seem like a great idea, not does it for anyone with an underactive immune system or smouldering infections.
     
  13. el_squared

    el_squared Senior Member

    Messages:
    104
    Likes:
    56
    Wow, I'm amazed you have been given all these things -- rifampin via IV...and how were you diagnosed with MCAS? I've never even been tested for it. The Stanford clinic doesn't want to test for much of anything.
     
  14. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,318
    Likes:
    3,981
    Pacific Northwest
    My doctor customizes his approach to each patient. He suspected I had MCAS due to the detailed health history I gave him, then tests he ordered confirmed it.
     
  15. Suffering Succotash

    Suffering Succotash

    Messages:
    29
    Likes:
    18
    I think MCAS is showing up more and more in patients with MECFS. That's what I'm reading and hearing from inside the medical field.
     
    Sancar, Forçe e Honra and XenForo like this.
  16. Suffering Succotash

    Suffering Succotash

    Messages:
    29
    Likes:
    18
    IRT mycoplasma, you probably have to be on antibiotics longer than three months to kick it. It's a bear of an infection and really gets established in the body. Recommended to me: take Clindamycin 6 months, then go off for 1 month, get re-tested by the same lab, then go back on for another 6 months.
     
    Forçe e Honra likes this.
  17. Suffering Succotash

    Suffering Succotash

    Messages:
    29
    Likes:
    18
    Learner I, I will write you a personal note about MCAS. Runs in my family. Thanks for your post.
     
    Learner1 likes this.
  18. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,318
    Likes:
    3,981
    Pacific Northwest
    I just found an interview with Dr. Afrin, where he was discussing autoimmune MCAS.

    After seeing this, I'm wondering if it can be triggered in the same way EBV and other infections that are common enough in many of us trigger antibodies. Does anyone know?
     
  19. Suffering Succotash

    Suffering Succotash

    Messages:
    29
    Likes:
    18
    That is my understanding, that MCAS is autoimmune.

    My guess, is that MECFS will be eventually discovered to be an immune illness also, with dysregulation at both ends -- meaning the patient has both an under-active immune system and over-active immune system (autoimmune).

    As an autoimmune illness, MCAS can be triggered by a variety of factors. Seems to be, at least partially, a histamine response. But it can't be only that.
     
    Forçe e Honra and Learner1 like this.
  20. Diwi9

    Diwi9 Senior Member

    Messages:
    893
    Likes:
    3,144
    USA
    @Jesse2233 - Doesn't Stanford also use Plaquenil?

    I have an upcoming appointment (it took over 1 & 1/2 years on the waitlist). Happy with the treatment I'm getting with Dr. Chheda, but willing to do an intake and get an opinion from Stanford.
     
    Forçe e Honra and Learner1 like this.

See more popular forum discussions.

Share This Page