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

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LifeIsSweet

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54
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.
 
el_squared

el_squared

Senior Member
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127
Suffering Succotash said:
<<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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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.
 
Learner1

Learner1

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el_squared said:
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.
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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.

ETA: Stanford finally called me after a 19 month wait on their waiting list, offering me an appointment 12 months out. I laughed - a 31 month wait for help??? I don't need help like that!
 
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M

marlabal

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4
el_squared said:
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.
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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.
 
el_squared

el_squared

Senior Member
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127
marlabal said:
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.
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Learner1 said:
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.
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That sounds great. Can you tell me more about the treatments that have worked for you?
 
Learner1

Learner1

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el_squared said:
That sounds great. Can you tell me more about the treatments that have worked for you?
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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.
 
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Learner1

Learner1

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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.
 
el_squared

el_squared

Senior Member
Messages
127
Learner1 said:
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.
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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.
 
Learner1

Learner1

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el_squared said:
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.
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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.
 
Suffering Succotash

Suffering Succotash

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33
Learner1 said:
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.
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LifeIsSweet said:
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.
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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.
 
Learner1

Learner1

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Suffering Succotash said:
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.
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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?
 
Suffering Succotash

Suffering Succotash

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33
Learner1 said:
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?
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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.
 
Diwi9

Diwi9

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@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.
 
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