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My Stanford ME/CFS Clinic experience

Discussion in 'ME/CFS Doctors' started by Diwi9, May 25, 2018.

  1. Diwi9

    Diwi9 Administrator

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    I recently went for an intake at the Stanford ME/CFS Clinic and wanted to share my experience for those that are interested in pursuing this clinic.

    I was referred to the clinic in October, 2016. I did not have an appointment scheduled until May, 2018. So, it was a long wait.

    I arrived for my appointment about 45 minutes early. This was good, because the clinic moved locations since they sent me my appointment instructions; I was not informed about the location change. I was able to get to my appointment in time; the new location is off-campus in Atherton.

    Upon arrival, the staff were friendly and helpful. Stanford is out-of-network for my insurance, so I paid $881 upfront for a one-hour appointment.

    Dr. Bonilla was about 1/2 an hour late, but was incredibly friendly and compassionate. I was asked to repeat my illness summary (prepared in advance per instructions) to him during the appointment, which gave him an opportunity to ask questions and seek clarification at points of interest. He also went through my medication list, sticking to most of it, but adjusting some supplements.

    I was provided a referral for endocrinology (follow up for prior abnormal lab results), neurology (POTS/OI), and some lab work (NK function, thyroid, inflammation marker, and toxoplasmosis - which totaled $1,700, also out-of-pocket). Thankfully, Dr. Bonilla heavily relied on my prior lab work, so I did not have to repeat most of the expensive testing I had already done.

    Treatment-wise, one can expect options including antivirals, LDN, diet, supplements, and anti-inflammatory prescriptions (Plaquenil, Colcyris, Arava). He gave strict guidance on pacing and heart rate monitoring. Patients are taken seriously and treated respectfully. Dr. Bonilla has been prompt in his response to me with each lab result that has been completed.

    I did not think the appointment was a waste of time or money. However, continuing treatment there would be very expensive for me as it requires in-office appointments and travel/lodging is expensive in the Bay Area on top of the cost of medical services being out-of-pocket. I will do at least one follow-up, but can't say past that because of cost.

    If you have decent medical support at home that is clueless as to treatment for ME/CFS, visiting this clinic to get a protocol in place may be worth it if your GP will work with it. If you are in-network, the clinic and the extensive resources within Stanford Medicine group are a boon for diagnostic options.
     
  2. Wonkmonk

    Wonkmonk Senior Member

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    Thanks for the interesting report

    What supplements does he recommend?
     
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  3. Diwi9

    Diwi9 Administrator

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    He specifically recommended: Liposomal Ubiquinol (CoQ10) (200mg/day), L-Carnitine (1g twice/day), and Turmeric w/ Meriva (500mg twice/day).
     
    Last edited: May 25, 2018
    pattismith, Sing, alkt and 7 others like this.
  4. Runner5

    Runner5 Senior Member

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    "He gave strict guidance on pacing and heart rate monitoring"

    Really interesting post, thank you so much for sharing. Can you tell us a little more about the pacing and heart rate monitoring?

    The out of pocket expenses in the states are crazy but that's actually not too bad cost wise. The out of pocket I've spent just this year is kinda insane, and the cost of not working, of course, is worse. Thank you again for the report!
     
  5. Diwi9

    Diwi9 Administrator

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    @Runner5 - The out-of-pocket would be okay, but for the fact that I pay very high rates per month for the insurance I have. Apparently, Stanford gives a break on labs for people without insurance, but I get to pay full rate and pay for my insurance that covers none of it! Also, he limited my lab work. Some labs can only be performed at Stanford.

    Dr. Bonilla looked at the health app on my iPhone, which I've never looked at. It did a pretty good job of tracking my steps and it was quite obvious that I have mastered the art of push-crash. When I feel better, I act like I can make-up for down time... I've heard doctors talk about pacing, but he looked at my stats and said no more than 2,000 steps per day (on bad days I'm normally under 1,000 and on good days I often get to about 4,000). He also did not want my heart rate to go past 100, whereas I had capped myself at 115. So, now I have a reduction to my steps and heart rate. I don't know if it will help improve my situation, but I'm going to try it out and see if I have less fluctuation.
     
  6. Shoshana

    Shoshana Northern USA

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    I recently had began a re-trial of CoQ10, and have been taking the Ubiquinol form of what I think is a good brand softgel.

    I am planning to reorder supply, soon, and now, reading this thread, I wonder/ I am confused by the Liposomal.
    Would that be liquid only? And what brands are quality ones?

    And any input , on if I should order that, instead?

    That was interesting how specific, that doctor was about the pacing instructions.
     
  7. Diwi9

    Diwi9 Administrator

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    He referenced "Tischon" which is an online seller on Amazon. So far, all I've found for liposomal ubiquinol is very expensive. I think the bottle I got was $197 and only 170 doses. I will have to find a cheaper supply to continue with this form of ubquinol...unless it turns into a miracle supplement...which I doubt it will ;)
     
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  8. Pink

    Pink Senior Member

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    Costco sells a liquid co q 10 that is supposed to be ubiquinol.
    Personally I couldn't tolerate the taste or texture, made me nauseous.
     
  9. Shoshana

    Shoshana Northern USA

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    But are all liquid forms, "liposomal"
    And all non-liquid softgels, NOT ?
     
  10. Diwi9

    Diwi9 Administrator

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    I don't think so...but I'm going to look into what Costco carries.
     
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  11. Diwi9

    Diwi9 Administrator

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    Shoshana likes this.
  12. joanierav

    joanierav

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    diwi 9. please give us an update on how you are progressing on this new regime you will be trying.. i am so jealous. good luck to you .

    joanie
     
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  13. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Fat soluble CoQ10 is not liposomal CoQ10. This is liposomal CoQ10 (Tischon).
    There was a member here who swore by this, even though it was expensive. I can't find the thread.

    https://www.ebay.com/itm/162157723191
    https://www.amazon.com/exec/obidos/ASIN/B001XQV1EY/

    Lower dose for pets:
    https://www.amazon.com/Liquid-LiQsorb®-Liposomal-CoQ10-Drops/dp/B000EALKY6
     
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  14. Shoshana

    Shoshana Northern USA

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    Diwi9 likes this.

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