Disappointing Visit to Dr. Montoya's PA

[ebethc]

No, its not the filler. I went to my compounding pharmacy and they made me up a 0.5.mg Naltrexone tab. My 0.5mg tab is the exact same sized tab as the 1.5mg tab- that means I'm taking even more filler. I have no anxiety on the 0.5mg tab. So it can't be the filler.

which pharmacy did you use?

 

[IreneF]

I'm new here. Anyways, yes, I also was not impressed with Stanford. I went for the first time last summer . I saw a Physician's assistant. I believe there is only 2 of them, hence they have a very large patient load. I don't think Dr. Montoya actually sees the patients himself or at least I only had the possibility of seeing a P.A.(apparently some patients on here have seen him in the flesh???)

Anyways, I was thoroughly unimpressed with my visit. It was a one hour visit the majority of which I brought the P.A. up to speed on my patient history, my symptoms, etc. That took about 40 min. Then she talked about the importance of diet, and probiotics, etc....general health stuff. We talked a bit about prognosis and how pacing was important. And then five minutes before my appointment ended she wrote me a prescription for Naltrexone. She explained how it helped regulate the immune system and how it benefited 70% of Stanford's CFS patients to some degree. And she gave me a prescription for Amitriptyline to help improve my sleep. She did not go over how to take them, we didn't discuss in depth all the benefits and risks. And then I was wisked out of there. My head was spinning it all happened so quickly. We did NOT discuss any other treatment therapies. I was given a Stanford email account and she said she would fill me in on the rest via email. Then I went downstairs at the clinic to get my blood taken which took 4 minutes (to test for viruses, etc.) And then I left. It was a crazy whirlwind experience.

I was also very disappointed when I asked the doctor's assistant if Montoya's protocol included the drugs Ampligen or Rituximab. These are two drugs that are showing great promise for a subset of CFS patients. I don't even know very much about CFS (I haven't read extensively due to cognitive disfunction and having received my diagnosis relatively recently), but even I know about these drugs. She had never heard of them. She clearly doesn't know too much about CFS then....she obviously just follows Montoya's protocol. I imagine he has a manual or some such thing which the P.A.'s are to follow with clear instructions: Step 1....step 2.....etc..... first treat all patients with Naltrexone and Amitriptylne. When blood work comes back, treat patients between the ages of 18-60 who tested positive with CMV or HHV6a with Vistide, patients 60 years + are to be treated with blah, blah, etc., etc. I don't really know, I'm just imagining.

The P.A. I saw also spent several minutes discussing how candida could potentially be indicated in the expression of CFS symptoms and how I could potentially have that. Candida....seriously? I was expecting to see someone who practices rigorous science and who's treatments are based on patient trials and hard data. Now I know nobody knows much about CFS at this point and it's all largely just hypotheses, but as far as I know (published studies in reputable scholarly journals) Candida is only a problem for folks who's immune systems are so compromised that they are dying ie. in hospice. Important Note: she did mention that the candida theory was hers and wasn't part of Dr. Montoya's protocol. She also mentioned that I should consider going gluten free, again her idea, not endorsed by Montoya. As far as I know the protocol is entirely that of Montoya, but these P.A.'s do add in their two cents ie. try taking this supplement, etc.

Anyways, the replies to my long, in-depth inquiries to my P.A. via my Stanford email account are very short and sometimes unhelpful. I have on several occasions had to repeat a question two or even three, yes, three times. My P.A. gives me the impression she isn't very knowledgeable about CFS or makes me nervous that she might not even entirely understand the science behind all the therapies on offer at Stanford. For instance, my blood work revealed that I have an infection and my P.A. wrote me a prescription for such and such as per Montoya's protocol. So I make inquiries....what are the benefits/risks and I get one line replies. I had to go see my family doctor to get info about the drug in question and they know nothing about CFS and these treatments.....that's how exasperating my Stanford experience has been thus far. I'm frustrated. Maybe my P.A. really is a smart and knowledgeable clinician, but I would never know because I get very short (I'm talking two sentence) replies.

I'm not giving up on Stanford yet. If they can help me, then dealing with the P.A.'s will have been worth it. But so far it hasn't been the world class experience I had been hoping for. I guess the P.A.'s- all two of them- are overworked....have huge patient loads. Perhaps, it's not the P.A.'s that are to blame at all. Perhaps, it's the Chronic Fatigue Clinic at Stanford's budget, organizational issues, etc, underfunding, etc. Because the P.A.'s are the face of Stanford, no doubt they get all the blame. In any case it's been very exasperating at times.

Anyone else exasperated by Stanford?

I wonder if this is a new PA. One of them recently quit, so they've probably hired someone and are getting her up to speed.

My last visit with a PA was not so great, but at least she didn't mention candida or going gluten free. You should complain. The squeaky wheel gets the grease.

You probably have Mycoplasma. It seems to be common among CFSers. I've twice taken antibiotics for it, but I didn't feel any better for it.

Montoya does see patients. I don't know if he sees every single one.

 

[frog_in_the_fog]

My thoughts...

LDN does do something, it is not in our heads. I take the full 4.5mg dose in the morning without any ill effects. I could not take it at night as it disrupted my sleep and caused panic attacks.

If candida really is an issue, this stuff works like a charm: Thorne Research Formula SF722

I have heard of patients getting fired by the Stanford clinic, so the squeaky wheel does get greased. Stanford is only interested in virus related CFS/ME , if you have 50 symptoms they don't really care about treating those symptoms.

It really is a team effort, you need to have some good doctors working for you. The quicker you dial it in the better, this is not a disease you want to take complete hold of you.

 

[ebethc]

It really is a team effort, you need to have some good doctors working for you. The quicker you dial it in the better, this is not a disease you want to take complete hold of you.

who's your doctor now?

 

[Firefly_]

who's your doctor now?

@ebethc my advice would be go see Dr Kaufman at OMI in Mt View

 

[ebethc]

@ebethc my advice would be go see Dr Kaufman at OMI in Mt View

I am leaning that way I have an appt early next year... I keep re-scheduling w him b/c I don't have the money, but in the mean time, I'm investigating other avenues.... Currently, curious about Lucinda Bateman, but it seems pretty impossible to get in to see her...

Re OMI: do you know if they are solely focused on anti-virals and SIBO/gut issues (like stanford)? I feel like so many doctors have a really specific playbook and don't deviate too much... I hope the more aggressive CFS therapies like Rituximab, Ampligen and IVIG are available at OMI, b/c that's probably where I'll wind up...

 

[IreneF]

I had rituximab at OMI, but the short-lived response I got was not worth it. Just an FYI.

 

[snowstorm24]

I wonder if this is a new PA. One of them recently quit, so they've probably hired someone and are getting her up to speed.

My last visit with a PA was not so great, but at least she didn't mention candida or going gluten free. You should complain. The squeaky wheel gets the grease.

You probably have Mycoplasma. It seems to be common among CFSers. I've twice taken antibiotics for it, but I didn't feel any better for it.

Montoya does see patients. I don't know if he sees every single one.

Hi IreneF, thanks I'll look into Mycoplasma.

 

[ebethc]

I had rituximab at OMI, but the short-lived response I got was not worth it. Just an FYI.

yes, it's extremely toxic and expensive! something like $64k for 18 mos of tx..yikes..

do you know if OMI prescribes ampligen? I know that they rx ivig, and, of course, av's...

 

[Firefly_]

I'm not sure re ampligen, but I do know that he tests for every damn thing under the sun on an ongoing basis (I get labs done probably 3 or 4 times a year and the last set was 17 vials of blood) and treats accordingly. And for me he's batting a thousand as far as "I think you have this or that even though preliminary tests come up negative, so he does more in depth testing and lo and behold, yup. I also appreciate the fact that he doesn't rely solely on pharmacological meds but will recommend things that you can get otc that might address issues more safely and effectively than a prescription drug.

I know he wants me on IVIG but the battle with the insurance co will be daunting because I passed the vaccine immune challenge and I don't get obvious infections anymore so...anyhow, that's my 2 cents...think he's brilliant and the sun shines out of his ass lol

 

[Sushi]

do you know if OMI prescribes ampligen?

I've never heard of them prescribing ampligen. I think that because of ampligen's limbo status there are only a few docs who are allowed to prescribe it as part of a research initiative--or something like that!

 

[ebethc]

I've never heard of them prescribing ampligen. I think that because of ampligen's limbo status there are only a few docs who are allowed to prescribe it as part of a research initiative--or something like that!

thanks! Yes, Lucinda Bateman, Lapp, and Peterson are the only 3 that I know about.

Why is ampligen in limbo?

 

[Sushi]

Why is ampligen in limbo?

It is not FDA approved. There have been problems with Hemispherx Biopharma, Inc.'s trials. Others are more familiar with the story, but it has been a long, bumpy road toward approval.

 

[Gingergrrl]

thanks! Yes, Lucinda Bateman, Lapp, and Peterson are the only 3 that I know about.

Why is ampligen in limbo?

OMI does not prescribe Ampligen and limbo is b/c of FDA and pharma politics like Sushi said.

 

[IreneF]

yes, it's extremely toxic and expensive! something like $64k for 18 mos of tx..yikes..

do you know if OMI prescribes ampligen? I know that they rx ivig, and, of course, av's...

When I had ritux it was abt $6k/treatment, so total would have been $36k. It's not very toxic, altho it can leave you vulnerable to certain infections.

 

[IreneF]

My experience with blood tests has been disappointing. Something shows up, I get treated, and I feel the same afterwards. Or else it's something that can't be treated, such as low NK function.

 

[ebethc]

When I had ritux it was abt $6k/treatment, so total would have been $36k. It's not very toxic, altho it can leave you vulnerable to certain infections.

was the $36k out of pocket? or, did you have to pay for it, then get reimbursed?

how long are you vulnerable to infections? e.g., during the treatment, then "x" months afterwards??

 

[IreneF]

was the $36k out of pocket? or, did you have to pay for it, then get reimbursed?

how long are you vulnerable to infections? e.g., during the treatment, then "x" months afterwards??

I don't remember. All I got was a whopping cold. I'm not exposed to people and their germs very much. I practiced good hygiene--really increased my hand washing.

 

[ebethc]

I don't remember. All I got was a whopping cold. I'm not exposed to people and their germs very much. I practiced good hygiene--really increased my hand washing.

was it worth it?

 

[Gingergrrl]

was it worth it?

I cannot answer for Irene, but if I can get RTX, the opportunity will be worth it b/c I am now certain, as are most of my doctors, that auto-antibodies are behind the core of my problems. If I have the opportunity to wipe them out, I will grab it with both hands. There is a free program Genentech that has a lot of hoops to jump through (2-3 insurance denials before you can even apply) but this is my plan. You would still pay all infusions costs but the RTX itself would be free. For me, this would be in 2017 and right now still trying to get approved for higher dose of IVIG.