Disappointing Visit to Dr. Montoya's PA

[ebethc]

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.

do you know if RTX raises NK cells (directly or indirectly)? that's my personal holy grail

 

[Gingergrrl]

do you know if RTX raises NK cells (directly or indirectly)? that's my personal holy grail

I have no idea, sorry!

 

[IreneF]

was it worth it?

Hard to answer. I didn't have to pay for the drug itself. I was hoping it would help research, but I don't think OMI has published anything.

I think it depends on what you can afford and if you are willing to accept that it won't work for you.

 

[IreneF]

do you know if RTX raises NK cells (directly or indirectly)? that's my personal holy grail

It affects B cells, not NK cells.

It could be that my NK function was too low for RTX to work very well for me.

 

[Gingergrrl]

It could be that my NK function was too low for RTX to work very well for me.

Am curious why low NK function would make RTX not work? Am clueless and really curious since my NK function is very low, too.

 

[ebethc]

Am curious why low NK function would make RTX not work? Am clueless and really curious since my NK function is very low, too.

so is mine ... 2 LU last time! Low NK cells & poor function are a biomarker for cfs, so it seems unlikely that a cfs drug would be dependent on healthy NK cells... I'd like to know more for sure..

 

[Gingergrrl]

so is mine ... 2 LU last time! Low NK cells & poor function are a biomarker for cfs, so it seems unlikely that a cfs drug would be dependent on healthy NK cells... I'd like to know more for sure..

Wow, I thought I was the winner with 5 and later 6 LU! As far as I know, there are many illnesses with low NK functioning and when I saw a mold specialist and also my mast cell doctor, neither were surprised at all and felt they matched with mold exposure and with MCAS (or just with an abnormal immune system in general) so I don't think it is exclusive to ME/CFS although it is definitely correlated.

And RTX is not a drug that was developed or FDA approved for CFS either. It is used off-label in many conditions, but it is only FDA approved for (I think) lymphoma, rheumatoid arthritis, and maybe 2-3 others. It's purpose is to wipe out the B cells so the reason I want to do it is to try to knock out all of my autoantibodies at the production level. If I did not have proven autoantibodies, I would not take the risk.

 

[ebethc]

Wow, I thought I was the winner with 5 and later 6 LU! As far as I know, there are many illnesses with low NK functioning and when I saw a mold specialist and also my mast cell doctor, neither were surprised at all and felt they matched with mold exposure and with MCAS (or just with an abnormal immune system in general) so I don't think it is exclusive to ME/CFS although it is definitely correlated.

And RTX is not a drug that was developed or FDA approved for CFS either. It is used off-label in many conditions, but it is only FDA approved for (I think) lymphoma, rheumatoid arthritis, and maybe 2-3 others. It's purpose is to wipe out the B cells so the reason I want to do it is to try to knock out all of my autoantibodies at the production level. If I did not have proven autoantibodies, I would not take the risk.

interesting.... I don't know if it's a match for me yet - just learning about it in advance of my appt w Kaufman in a few months... Also, I found this, which seems to indicate that RTX stimulates NK cells
https://www.ncbi.nlm.nih.gov/pubmed?cmd=historysearch&querykey=9

I have a mast cell disorder.. not sure if it's my core problem, but I don't think it is... I think its really just a function of my broken immune system... If I were stronger, I think it would go away or be better.. I believe that read here on PR that others have mast cell issues go away as they get better

Re mold - very confusing for me b/c dampness really bothers me, and for a long time I thought it was mold spores in the air, but supposedly, all mold does not product mycotoxins and myctoxins are the real ... My problems started as a child and I wasn't living in a moldy house or in a particularly damp climate.. not super dry, though... I feel great at high altitudes, no pollution, super dry (< 30% humidity), and sunny mild weather... I wish I understand more about nitric oxide, because that seems to be at play... Just starting to read martin pall re nitric oxide, but not understanding it yet..

How do you know if mold is your problem? do you have a strong reaction? my allergist said that any particulate matter makes my system flare, not an allergic reaction per se, like an IgG reaction... I didn't test positive for ONE allergan in a v thorough test - which shocked me... My allergist might be right, and/or, my immune system is too lame to make antbodies.. is that possible? questions for dr k

 

[IreneF]

Am curious why low NK function would make RTX not work? Am clueless and really curious since my NK function is very low, too.

It just popped into my head. Since NK cells kill other cells, if they are not responding normally to stimuli they won't kill the B cells that are tagged by rtx. I have no idea if this is how it works. Perhaps @Jonathan Edwards can help.

 

[Jonathan Edwards]

It just popped into my head. Since NK cells kill other cells, if they are not responding normally to stimuli they won't kill the B cells that are tagged by rtx. I have no idea if this is how it works. Perhaps @Jonathan Edwards can help.

NK cells probably contribute to killing via rituximab but there are other mechanisms that can be used. As far as I know nobody has ever come across a case of rituximab failing to deplete B cells because of poor NK function - certainly the Norwegians treating CFS/ME have never reported this. It would be obvious because the B cell count done after treatment would not be as low as it should be.

 

[BellaSC]

I had a bad experience to. Stanford told me to start at 1.5mg than if tolerating go to 3mg, then ending up at 4.5. I started having severe anxiety at 1.5 mg. After several weeks I stopped and started having crazy withdrawals!!!! Couldn't sleep, panic attacks. Went to see my psychiatrist and she told me it wasn't possible.....it was placebo effect. After 6 or 7 day I took 0.5mg and within an hour I felt better. I'm still at 0.5mg 6 weeks later, but am afraid to go up for fear of the anxiety. Maybe I'll try. Could someone who also had anxiety advise, please!

I tried two times to take LDN as directed by my PA at Stanford.... first time I took at night and maybe slept 2 or 3 hours total. It was horrible. I felt like a zombie. When I called my compounding pharmacy, they said to star far lower than the original 4.5 mg and start with .5 only....
Took me months to give it another try. This time I took it during the day...only .5mg
I had such a severe onset of nausea that I almost drove myself to the hospital.
I just couldn't tolerate it at all and was not willing to subject myself to these extreme reactions. Clearly my body did not like Naltrexone.

 

[BellaSC]

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?

Really sad to hear about your experience at Stanford.....

Fortunately my last visit was much more reasonable.
But since they've tried all their protocols with me- except Valcyte , which Dr. Chia pleaded with me NOT to take.
Since I actually get to see Dr. Chia himself and not a PA, I listen to and trust him.

So at my last Stanford PA visit, she referred me to their Integrative medicine Clinic at Stanford.
Long and good visit there a couple months ago.
They are having me do some complicated testing through Genova Diagnostics.
Took me quite awhile with brain fog to get it together and figure out the sequence of what to do first etc.
Stool, Blood and Urine....a little complicated but I'm getting it done.

I feel hopeful....
and Ive actually been not having as many infections and acute episodes....sleeping better as well.
I weaned myself off Gluten about 2+ years ago and stopped eating much dairy.
I take a lot of supplements...Multi Vit, B-12, D-3 (5,000mg per day), Axthasanthin, Biotin, L-Lysine, DHEA, Probiotics and Equilibrant -which is Dr. Chia's propriatary formula of vitamins and Chinese anti-viral herbs.
I also use " Power To Sleep" by Irwin Naturals after I took myself off Ambien about 5 years ago.

I also got a book called "Medical Medium" by Anthony William. All about Chronic Illness.
Following some of his protocols- all food/ nutritionally based, seems to have made a difference.

 

[BellaSC]

I see you are already seeing Dr Chia and OMI. We have given up on our expectations for Stanford. And their success rate is about 30%. I read that some people have been on antivirals for 7 to 10 years before they had good results.
Regarding LDN, a lot depends on the fillers the pharmacy uses to mix it with. You can also ask them to just use sterile water. But it does say to start with .5 mg. some people stay on that dose.

I do also see Dr Chia but have not gone to OMI due to the prohibitive cost out of pocket....
I've been on disability for 8 years so paying hundreds of dollars and then praying that Medicare will reimburse , is just a little too stressful.
And yes, Ive been on antivirals for 8 years....

 

[snowstorm24]

Hi IreneF, thanks I'll look into Mycoplasma.

Hi Irene. Yes, I did test positive for Mycoplasm Pneumoniae. Stanford want me to do 3 monthes of antibiotics. I haven't decided what to do yet....I want a second opinion. My family doctor said I would be crazy to do antibiotics for that long. Isn't it dangerous....wouldn't it disrupt my gut microbiome....and would it fully recover when I stopped? Have you tried the three monthes of antibiotics? How did it go?

 

[JES]

Hi Irene. Yes, I did test positive for Mycoplasm Pneumoniae. Stanford want me to do 3 monthes of antibiotics. I haven't decided what to do yet....I want a second opinion. My family doctor said I would be crazy to do antibiotics for that long. Isn't it dangerous....wouldn't it disrupt my gut microbiome....and would it fully recover when I stopped? Have you tried the three monthes of antibiotics? How did it go?

Antibiotics for lyme disease are often taken for even longer periods, sometimes for over a year. For mycoplasma most doctors also recommend at least one month. The effect on microbiome is quite difficult to predict, as it depends on the individual and the type of antibiotic taken, some antibiotics are more broad-spectrum than others. I have taken courses of a few months in attempts to treat mycoplasma and felt worse towards the end of the course, but it's individual.

 

[ebethc]

It's purpose is to wipe out the B cells so the reason I want to do it is to try to knock out all of my autoantibodies at the production level. If I did not have proven autoantibodies, I would not take the risk.

how do you know if you have autoantibodies? what is the test called? at this point, I can't remember if I've been tested for this or not... yet. I'm going to Kaufman next year..

If RTX is $6k at OMI, I don't think that I can afford this anyway, but good to know!

 

[IreneF]

Hi Irene. Yes, I did test positive for Mycoplasm Pneumoniae. Stanford want me to do 3 monthes of antibiotics. I haven't decided what to do yet....I want a second opinion. My family doctor said I would be crazy to do antibiotics for that long. Isn't it dangerous....wouldn't it disrupt my gut microbiome....and would it fully recover when I stopped? Have you tried the three monthes of antibiotics? How did it go?

I don't recall how long I took antibiotics. I think it was doxycycline for 6 weeks. I did not enjoy it--bad taste in my mouth, stomach aches, and vaginal yeast. I ate natto for my gut. I did not feel at all better for the ab treatment. So my N=1 experiment was negative. I'd like to get feedback from other people, tho.

 

[xrayspex]

Really sad to hear about your experience at Stanford.....

Fortunately my last visit was much more reasonable.
But since they've tried all their protocols with me- except Valcyte , which Dr. Chia pleaded with me NOT to take.
Since I actually get to see Dr. Chia himself and not a PA, I listen to and trust him.

So at my last Stanford PA visit, she referred me to their Integrative medicine Clinic at Stanford.
Long and good visit there a couple months ago.
They are having me do some complicated testing through Genova Diagnostics.
Took me quite awhile with brain fog to get it together and figure out the sequence of what to do first etc.
Stool, Blood and Urine....a little complicated but I'm getting it done.

I feel hopeful....
and Ive actually been not having as many infections and acute episodes....sleeping better as well.
I weaned myself off Gluten about 2+ years ago and stopped eating much dairy.
I take a lot of supplements...Multi Vit, B-12, D-3 (5,000mg per day), Axthasanthin, Biotin, L-Lysine, DHEA, Probiotics and Equilibrant -which is Dr. Chia's propriatary formula of vitamins and Chinese anti-viral herbs.
I also use " Power To Sleep" by Irwin Naturals after I took myself off Ambien about 5 years ago.

I also got a book called "Medical Medium" by Anthony William. All about Chronic Illness.
Following some of his protocols- all food/ nutritionally based, seems to have made a difference.

I am curious why did Dr Chia plead with you not to take valcyte? (My body doesn't like valtrex at all so avoid)

 

[Gingergrrl]

If RTX is $6k at OMI, I don't think that I can afford this anyway, but good to know!

I there is great variety in price depending on insurance authorization, if you get the Med subsidized by Genentech, etc. My plan is to work w/my OMI doc but have the RTX infused locally at the same infusion center where I currently get my IVIG. This is all so preliminary I probably should not even jinx myself by mentioning it. But wanted to reply b/c I think the cost must vary greatly.

 

[Suffering Succotash]

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 had an extremely disappointing experience also. Slap-dash medicine and no follow-through. The PA is good, but she is not a physician.