Is it worth the trip/cost to Dr Montoya Stanford Clinic???

[Daffodil]

@fireflymd antibiotics and i think sometimes anti inflammatory. he has been researching this disease for like 30 yrs....he is way ahead of anyone else.

if you cant get to him, i have heard good things about dr. kaufman (open medicine institute in cali i think??). from what i recall, he uses similar treatments

 

[IreneF]

Hi Chickpea,

I have been a patient of Dr Montoya for several years and now see Dr. Bateman. Dr Montoya is a compassionate physician and has other stated, he is mostly concerned with viral causes of CFS/ME. His mainstays of therapy are antivirals and anti-inflammatories. My problem with his clinic is that he is so busy that his PA's end up managing the patients, frequently without his input. Some of his PA's are knowledgable but others are incredible uninformed and make poor recommendations. It appears you have already tried most of what he has to offer in terms of treatment. Dr Bateman is now seeing me and my daughter. She is much easier to contact and will arrange a Skype consultation in followup if you desire.

Best,
Gary

Actually, last few times I saw Montoya, he was much less interested in viral causes and more interested in inflammation. He does have a staffing problem, though.

 

[LifeIsSweet]

Hi Gary, I have a question for you - when you started antivirals, did you feel worse before you started feeling better? I started taking Acyclovir for high VSV-1 a couple weeks ago, and feel horrific. I felt bad before but either I'm having the mother of all flare-ups or I'm reacting to the antiviral. Question is - Am I having an "allergic" reaction of sorts, or is getting worse before I get better part of the recovery? I want it to work and am willing to hang in there.

Also do you still take Cochicine?

I went to Stanford and met with one of Montoya's P.A.s who did not consult with him. She never answered my follow-up questions when I tried to contact her afterwards. Such a shame. What benefits are you getting from Dr. Bateman? Is this Lucinda Bateman? I assume you have skype appointments.

Would love to hear from you!

 

[Butydoc]

Hi Gary, I have a question for you - when you started antivirals, did you feel worse before you started feeling better? I started taking Acyclovir for high VSV-1 a couple weeks ago, and feel horrific. I felt bad before but either I'm having the mother of all flare-ups or I'm reacting to the antiviral. Question is - Am I having an "allergic" reaction of sorts, or is getting worse before I get better part of the recovery? I want it to work and am willing to hang in there.

Also do you still take Cochicine?

I went to Stanford and met with one of Montoya's P.A.s who did not consult with him. She never answered my follow-up questions when I tried to contact her afterwards. Such a shame. What benefits are you getting from Dr. Bateman? Is this Lucinda Bateman? I assume you have skype appointments.

Would love to hear from you!

Hi Lifeissweet,

I also had a bad reaction to Acyclovir. Probably started on too large a dose. May need to start out on a much smaller dose and increase it until you reach the proper therapeutic level. Dr Montoya generally starts patients on a very small dose. Probably didn't tell this to the PA's. Again, I believe some go his PA's are incompetent and very poorly trained concerning CFS/ME. I found some of the PA's to frankly dangerous. I would request a different PA.

I no longer take colchicine, wasn't effective with me.

Dr. Bateman's first appoint with me took three hours. She does accept most insurances. She extraordinarily competent with CFS/ME and taylors her care to the individual. She does not use Valcyte and feels the evidence doesn't justify the risk. She realizes that there is no cure presently but seems very excited concerning the Retuximab trial. Her sister had CFS/ME and ultimately died from from lymphoma. This is what got her interested in CFS/ME.

Dr. Batemen spends a lot of time trying to improve your symptoms. You can have Skype conversations but charge you because the insurance companies won't pay for this type of consultation. I have a vacation home near Salt Lake City and am able to see her in person.

Best,
Gary

 

[Binkie4]

@Butydoc ,@LifeIsSweet

Hope you are ok with me joining in to ask for advice re acyclovir. I am almost 4 weeks into treatment and feel diabolical- I related to your 'terrible' @LifeIsSweet. Am not sure whether I should be continuing and would welcome opinions.

For background, I live in UK and was diagnosed in 2008, attended the local CFS hospital based service in 2009 and had a few CBT sessions, no GET. Had some improvement from tonics made up by medical herbalist, and take a range of supplements. Was very slowly improving until about 2 years ago when deterioration began, now severe.

As you know, UK NHS treatments are very few but I recently made a private appointment with the head of the local CFS/me service, Dr Bansal, who prescribed acyclovir, 400mg x3 daily. No instructions on starting slowly, so I took 1 tablet for 1 day, 2 on the second day and full dose on day 3. ( I checked with another of his private patients who had the same instructions and started full dose on day 1)

On day 8, I woke with a fearful depression lasting 24 hours and then passed, but have felt increasingly unwell since then, truly terrible. Dr Bansal wrote that acyclovir is well tolerated and to increase fluids, and to see GP if no improvement. I see him again in July. I know that a lot of people here have difficulty with acyclovir so I wonder if you have any further advice.

I have an appointment to see my GP tomorrow but in all honesty, doctors here are not well trained in ME, so it's necessary to look further afield.

If this is a herx type reaction, how long should I expect it to last? Would reducing the dose help? Stop for a while and restart?

I hope you don't mind me drawing on your experiences. Also hope that you are feeling a lot better now @LifeIsSweet ? Did you both manage to continue Acyclovir and did you feel any benefit?

 

[LifeIsSweet]

Hi Binkie,

Since I stopped taking Acyclovir I learned a couple things - first, you're supposed to start on a small dose and increase slowly. I started with 800 mg. So, there's that. Also, if you felt bad it might actually be a good sign that you are responding to treatment. It's not a herx reaction but something similar. It could last months before you feel better. So, I intend to start again soon on a low dose. I may do Valcyte or Valtrex instead of Acyclovir.

OH, I just remembered something important. Do you have a mycoplasma infection? (I take it you have herpes, epstein barr or some other chronic viral infection.) If you don't know, please get tested for it. I think it needs to be dealt with before starting anti-viral therapy. That's what the Physician's assistant at Stanford seems to think. Treating that is opening a whole new can of worms...

ALSO, and this is the most important thing, Binkie: any other viral "co-infection" needs to be treated first. According to Dr. Lerner, these must be addressed first before antiviral therapy is to be effective. Here is the abstract and a link to the full study. (You can skim through the Patients and methods section, but read the Purpose and Results and conclusions):

Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome

Purpose: We hypothesized that chronic fatigue syndrome (CFS) may be caused by single or multiple Epstein–Barr virus (EBV), cytomegalovirus (HCMV), or human herpesvirus 6 (HHV6) infection. To determine if CFS life-altering fatigue and associated findings including muscle aches, tachycardia at rest, chest aches, left ventricular dysfunction, syncope, and elevated herpesvirus serum antibody titers are reversed by long-term subset-directed valacyclovir and/or valganciclovir.

Patients and methods: Data were collected at physician visits every 4–6 weeks from 142 CFS patients at one clinic from 2001 to 2007. To be included in this study, patients had to be followed for at least six months. The data captured included over 7000 patient visits and over 35,000 fields of information. Severity of fatigue was monitored by a validated Energy Index Point Score® (EIPS®). Baseline and follow-up serum antibody titers to EBV, HCMV, and HHV6, as well as coinfections with Borrelia burgdorferi, Anaplasma phagocytophila, Babesia microti, and antistreptolysin O, 24-hour ECG Holter monitors, 2D echocardiograms, cardiac dynamic studies, symptoms, and toxicity were captured and monitored. International criteria for CFS plus a specifically designed CFS diagnostic panel were used.

Results and conclusions: The Group A herpesvirus CFS patients (no coinfections) returned to a near-normal to normal life (P = 0.0001). The long-term EIPS value increased (primary endpoint, P , 0.0001) with subset-directed long-term valacyclovir and/or valganciclovir therapy. Secondary endpoints (cardiac, immunologic, and neurocognitive abnormalities) improved or disappeared. Group B CFS patients (herpesvirus plus coinfections) continued to have CFS.

http://www.treatmentcenterforcfs.co...ment-of-142-herpesvirus-patients-with-CFS.pdf

 

[Binkie4]

Hi @LifeIsSweet

Thank you so much for your full response, your experiences and Lerner's paper, now printed off and ready to read.

Since writing my post, I have already reduced my dose. Took 800 mg yesterday, and have not taken any yet today so that it's 22 hours since taking any. Woke feeling so much better but muzziness returning a bit so will have to see. I like to persist but am not sure it's the wisest option.

I think you must have stopped if you plan to restart at a lower dose. Would you mind telling me how long you tried acyclovir, and owhat dose you will be trying? I have decided that I cannot continue with the side effects as severe as I suffered so my options are 1) stop altogether or 2) reduce dose.

Another problem is that I do not have any results for tested viruses. My Consultant does not advise getting them ( he seems to go on history and clinical picture) so my base knowledge is limited.

I will read Lerner's paper and formulate more questions.

Am also trying to get to grips with Lyme. I had 2 tick bites around the time I became ill and recently persuaded my GP to test for Lyme. It was negative- Elisa, but I know how unreliable that test is so I think I need a western blot. It's very hard here to get any sort of testing because of the hold the psychologists have had on the illness.

Anyway thank you again. Hope your next try works well and let us know how you get on. This forum is a godsend.

 

[LifeIsSweet]

With respect, I think you need to find a new doctor. For one thing, you should be tested for viruses. If you don't have them, you shouldn't be on antivirals, for God's sake!

What makes me really mad is that you had TWO TICK BITES around the time you got sick and your doctors at the time weren't persistent in making sure you got the best tests. Igenex is pricey but I think it's legit. In any case, maybe you could see a "Lyme-literate" doctor who will listen to you. You can still have lyme without having gotten the bullseye rash.

It's important that you get tested for those co-infections mentioned in Lerner's abstract. They need to be treated first before you can have any success with antivirals. That's what I need to do before I start again (on a small starting dose of 200 a day). I would ask your doctor how to get off the Acyclovir. I think you can just stop without tapering but I'm not sure.

Good luck to you!

 

[Binkie4]

@LifeIsSweet

Thank you for comments above. I would love to have choice of doctors in UK but they just don't exist.
The NHS has had very strict prescribing rules, just CBT and GET for ME/CFS, and GPs cannot prescribe outside these. ( Currently NICE is reviewing whether this advice needs reviewing- yes, I know this sounds odd). The dreadful PACE trial with its manipulated results has imprisoned us all.

I decided I wanted to have a wider choice so recently had a private consultation. Cost £250 for half an hour, and acyclovir prescribed. Follow up in 3 months. Struggling with the herx type reaction as I have described. Reduced dose for 2 days but aim to go back up today.
My GP yesterday did order more NHS tests including viruses but to my mind it would have been more logical to have these before treatment. Anyway he is being as cooperative as he is allowed to be. I took him the recent letter to the NY doctors which interested him.

I did discuss Lyme and , as I said, have already had an Elisa test which was negative. I know this test is unreliable so asked about a western blot test. GP looked up tests and came up with an immunoblot test??? for which I would have to pay £300. I.e. non NHS. He is only allowed to prescribe Elisa on the NHS. Once I've checked that this is reliable, I think I'll go forward with this. If anyone is able to comment on Lyme tests and reliability, would be grateful. Am in UK so don't have access to US labs.

Thanks for the advice.

 

[edawg81]

Once I've checked that this is reliable, I think I'll go forward with this. If anyone is able to comment on Lyme tests and reliability, would be grateful. Am in UK so don't have access to US labs.

I think the LLMD prefer these labs:

http://www.igenex.com
https://www.arminlabs.com/en/tests
http://www.redlabs.com/request-forms

I tested positive on igenex IGM WB (western blot) only and not through local labs via Elisa and WB. But as always with chronic disease, who knows what virus or bacteria is playing a role in ME/CFS.

 

[Suffering Succotash]

Actually, last few times I saw Montoya, he was much less interested in viral causes and more interested in inflammation. He does have a staffing problem, though.

Dr. Montoya is PART of the staffing problem. He is phoning it in at this point - only in the clinic 4 hours a week and not providing appropriate care for ME/CFS patients. He saw me for a few minutes, then completely walked away from my care. He never responded to many, many communications over months asking him to clarify his treatment plan, including the very odd decision to prescribe an antiviral for a virus that tested negative. His PA is very good but is no substitute for a physician dealing with a very complex illness with many components. Dr. Bonilla is a noticeably uninformed about ME/CFS -- he is not a valid options for patients at this point because he is so inexperienced in the illness. Seems the reason he was hired was that he was from Colombia, not because he had ME/CFS treatment knowledge. I'd say the whole experience at the Stanford CFS Clinic -- except for the PA -- is kind of a sham.

 

[TrixieStix]

Too bad it's impossible to become a patient at Bateman Horne. They are booked solid. I got on their waiting list a year ago and never heard a peep until a few days ago when they sent out an email basically saying that they still are not accepting any new patients and won't be anytime soon.

 

[Sad Dad]

Seems the reason he was hired was that he was from Colombia, not because he had ME/CFS treatment knowledge.

I appreciate the frustration you've had at Stanford. Like Dr. Montoya, Dr. Bonilla is an infectious disease specialist. My personal guess is that he was brought in to help solve the PA problem that others have had.

 

[Suffering Succotash]

I appreciate the frustration you've had at Stanford. Like Dr. Montoya, Dr. Bonilla is an infectious disease specialist. My personal guess is that he was brought in to help solve the PA problem that others have had.

The problem with Bonilla is that his understanding of the illness is in its infancy. When he was in the exam room with Dr. Montoya and me, Montoya was explaining the most basic concepts of the illness, stuff we patients have known for years. It was embarrassing. I can't believe someone so unknowledgeable was hired to provide patient care. The clinic at Stanford now is limping -- Montoya is rarely there, Bonilla is very inexperienced, and the poor overworked PAs don't have the medical knowledge to substitute for a physician.

 

[Lanya]

I've seen Dr. Montoya for years, and he is an incredibly nice man, but his range of knowledge is really limited to infectious diseases and anti-viral treatment.

I like to check in with him nonetheless (since I live in the area) but he's now having patient seen Dr. Bonilla, who I really disliked. He seemed somewhat knowledgable but didn't listen to my specific issues, liked to lecture, and was generally abrasive. Maybe I saw him on a bad day, but it was quite a letdown from Montoya, who is knowledgable within his specialty. The PAs are compassionate but overworked and their knowledge is pretty basic.

 

[Learner1]

This thread explains a lot.. I've been on Montoya's wait list for 9 months and hasn't heard a peep. I did, however, find Dr Kaufman, who's a couple miles away at the Center for Complex Diseases, and he's great. Well with flying to CA to see him. I've heard good things about his partner, Dr. Chedda, too.

 

[cb2]

Does anyone feel like Dr Bonillla is getting up to speed? It makes sense that a new doctor would know very little about CFS since not much is known about it anyway. Hoping after a few months Dr Bonilla is grasping some understanding? I had a visit on Monday and was proud of myself for averaging 4000 steps a day. Spread throughout the day. He chided me that was too much. I had been. Able to do the 4000 steps to day without crashing.
I left feeling kind of defeated. He prescribed plaquenil in addition to the famvir I have been on since Dec. He said its safe in the the doses he gives, 200 milligrams twice a day. ( not sure how I feel about this) then told me I really really need to pace. He said don't you want to get well and do things with your life in the future. With my body, I have noticed moving less actually makes it harder to do anything overall.

I also tried to show him some issues I've been having with my lips. He said it was the virus flaring up and didn't even really look, but after doing my own research, it seems to be some Slight yeast infection.

Prescribing the plaquinel and not doing any labs but telling me to come back in 6 months seemed a little startling to me. Maybe it's supposed to be up to our primary to follow up with those things.? But it seems like the prescribing doctor would be the one to do such.??

 

[Suffering Succotash]

Hi Gary, I have a question for you - when you started antivirals, did you feel worse before you started feeling better? I started taking Acyclovir for high VSV-1 a couple weeks ago, and feel horrific. I felt bad before but either I'm having the mother of all flare-ups or I'm reacting to the antiviral. Question is - Am I having an "allergic" reaction of sorts, or is getting worse before I get better part of the recovery? I want it to work and am willing to hang in there.

Also do you still take Cochicine?

I went to Stanford and met with one of Montoya's P.A.s who did not consult with him. She never answered my follow-up questions when I tried to contact her afterwards. Such a shame. What benefits are you getting from Dr. Bateman? Is this Lucinda Bateman? I assume you have skype appointments.

Would love to hear from you!

When I took the antiviral Valcyte, I read a great deal about it before beginning, and what others said, and what I found is, yes, you do feel worse before you feel better.

I thought this was due to viral activation before die-off. You might research Herxheimer effects. Yes, hang in there. I had good results from it.

Stanford's CFS clinic is poorly run. Montoya who is almost never there, Bonilla who is very inexperienced in this illness and just does formula-work, and the overworked PAs.

This is an extremely serious debilitating illness and the infrequent care provided by Stanford CFS, is, IMO, medically negligent given the seriousness of the illness.

It's not even up to the standards of Stanford Medical.

 

[Suffering Succotash]

Does anyone feel like Dr Bonillla is getting up to speed? It makes sense that a new doctor would know very little about CFS since not much is known about it anyway. Hoping after a few months Dr Bonilla is grasping some understanding? I had a visit on Monday and was proud of myself for averaging 4000 steps a day. Spread throughout the day. He chided me that was too much. I had been. Able to do the 4000 steps to day without crashing.
I left feeling kind of defeated. He prescribed plaquenil in addition to the famvir I have been on since Dec. He said its safe in the the doses he gives, 200 milligrams twice a day. ( not sure how I feel about this) then told me I really really need to pace. He said don't you want to get well and do things with your life in the future. With my body, I have noticed moving less actually makes it harder to do anything overall.

I also tried to show him some issues I've been having with my lips. He said it was the virus flaring up and didn't even really look, but after doing my own research, it seems to be some Slight yeast infection.

Prescribing the plaquinel and not doing any labs but telling me to come back in 6 months seemed a little startling to me. Maybe it's supposed to be up to our primary to follow up with those things.? But it seems like the prescribing doctor would be the one to do such.??

In my opinion, there's no way Bonilla could be anywhere near where he needs to be to effectively and skillfully treat patients given how green he was less than a year ago. His knowledge of MECFS was in its infancy, and I was floored to see how little he knew.

The informed patients on this forum know far more than Bonilla, and Bonilla is just using a formula script to treat every patient.

Also....whenever a doctor says anything like this:
<<He said don't you want to get well and do things with your life in the future.>>
I consider that manipulative talk.

It usually comes after you disagree with Montoya or Bonilla on something,
and they throw it in your face, as if to say,
Don't disagree with my [standardized] advice/treatment -- don't you want to get better?

When, in fact, you're asking a legitimate question about a treatment that often uses
very powerful drugs with not the best percentage of effectiveness treating the illness.

There are a few things in the standardized arsenal that Stanford CFS/Montoya/Bonilla use
that aren't getting the results that justify prescribing them to the extent that they do.

And if you have a particular illness that's a comorbidity with MECFS, that is totally ignored for its contribution in exacerbating the MECFS.

(I'd take a closer look at Plaquenil were I you -- not much success I've heard with it; read
the other comments here -- and the ocular risk is high.)

Lip/virus issue -- was Bonilla thinking this was HSV and not yeast?
He should be able to make a dx on the spot.
BTW, when I saw first him, he was learning the HSV family members. Shudders.
Could not believe this doc was hired to treat this enormously complex illness.

 

[Suffering Succotash]

[QUOTE="Prescribing the plaquinel and not doing any labs but telling me to come back in 6 months seemed a little startling to me. Maybe it's supposed to be up to our primary to follow up with those things.? But it seems like the prescribing doctor would be the one to do such.??[/QUOTE]

The followup at Stanford is lousy. Every 6 months, see patients once a year?
That's not illness management.

For Plaquenil, you should have safety labs done by Stanford before starting to get a baseline and then every 3 months. Look up what those labs are. The same lab should do all the testing.

Of course, get the ocular exam before starting Plaq and schedule those regularly with an eye doctor. Check the latest ocular screening protocols to learn how often (they just changed).

Plaq is an antimalarial and is sometimes used to treat autoimmune illnesses, if you have one or several. Read the research on this on PUBMED, and also read the comments here by other folks. There is some research coming out that MECFS is an immune illness with both hypo and hyper immune function. Whether Plaq helps with that, hmmm, uncertain.

It was prescribed for me, and
-- the lack of followup on it by Montoya/Bonilla
-- the lack of success from it as described by other patients, and
-- the ocular risk made it not seem wise, to me.

But you have to make your own choice.