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?
