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

Discussion in 'ME/CFS Doctors' started by chickpea, Nov 1, 2016.

  1. Ugh!
    I have been battling with M.E. for 13 yrs with no actual improvement. I have seen a couple CFS specialists; Dr Byron Hyde and Dr Alison Bested (in Canada) and a few visits with Dr Klimas a couple years back when I was living in Florida. Now I live in Minnesota, and am deciding if it's worth seeing yet another doctor. At this point, I ONLY want to see a doctor that will TREAT my illness and help me improve. I am dubious if Dr Montoya will actually be able to help? Is he worth the cost, all the travel required to get to him, time and precious energy on my part? I don't think I can handle another disappointment of failed medical help.
    I know this much:
    I have issues with my thyroid
    Orthostatic Intolerance (positive tilt table)
    Very Low NK function
    Tested positive for: CMV, EBV
    Brain Spect show significant brain perfussions
    Exercise test showed low VO2 Max and duration

    I have tried and either have not tolerated or had no change in symptoms:Immunovir, Valcyte, Equilibrant, thyroxine, Ritalin, various herbs, supplements and vitamins.

    If anyone can help with their own experiences of Dr Montoya's - if they found it helped them, made them worse, or basically remained the same, I would so greatly appreciate it!

    Much apprecaition and hugs to my fellow ME. survivors!
     
    Binkie4, Jan, justy and 4 others like this.
  2. *GG*

    *GG* Senior Member

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    I don't see him, don't know a whole lot, but do know that there is not much treatment for ME/CFS. So, why not wait a year or 2, perhaps save some money, since money is an issue, and you don't have a lot of energy, which is typical with this illness.

    Is the Orthostatic tolerance causing issues? that is treatable, correct? Do you have low thyroid? That is being treated, right?

    I did the VO2 max testing also in 2010, going to share it here eventually. I was found to be "moderate", which doesn't feel like it when you are in the rat race!

    Looks like my disability is soon to be "finalized" after 3 years, so I likely have a lot to deal withi in the near future.

    Just my 2 cents.

    GG
     
    Jennifer J, Dechi, Neunistiva and 2 others like this.
  3. IreneF

    IreneF Senior Member

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    CFS/ME is still incurable. Otherwise we wouldn't be here.

    I see Dr. Montoya. I'm on colchicine, LDN, and Famvir; used to be on Valcyte but my insurance stopped paying for it.

    Nothing I've tried has been it. I've had a little improvement, but that could be due to anything.

    Also, you will be seen by a nurse practitioner, not Montoya. I don't think the current NPs have enough experience at present to be helpful if you've already seen other specialists and are on top of your OI and thyroid problems.
     
    Jennifer J, BurnA, Sancar and 5 others like this.
  4. Daffodil

    Daffodil Senior Member

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    @chickpea I haven't seen Montoya but I hear it is very difficult to see him; you are seen by an assistant. my friend has been seeing him (and other doctors) for a long while and is no better.

    if this means anything, I was bedridden and now can function at 35-40% (give or take) thanks to Dr. DeMeirleir

    xo
     
    Dechi, Sancar, actup and 1 other person like this.
  5. I've been meaning to thank you all for your replies!
    I think hearing that others have been and still struggle with their ME it defeats the purpose, and upheavel of going. So for now, I've put Stanford to the back burner. Especially after learning, I don't even get to see him after all this cost and effort. Thank you again for helping me out - I love this site!
     
    Dechi and frederic83 like this.
  6. Louie

    Louie

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    I am seeing Dr. Montoya and he seems focussed on a viral cause and thus anti-viral treatment. You say you have already tried several anti-virals so Dr. Montoya likely won't offer you much else.

    He is doing research so the above comments are subject to change. Hang in there.
     
    Jennifer J and fireflymd like this.
  7. Dechi

    Dechi Senior Member

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    @chickpea Do you mind if I ask why Dr Hyde was a disappointment ? I am currently seeing him and am interested in your experience.
     
    justy and Theodore like this.
  8. IreneF

    IreneF Senior Member

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    I support Dr. Montoya and all he does. I've had the opportunity to be enrolled in some studies. It's just that there aren't any effective treatments. Sure, some people might get better on one thing or another, but no one understands the disease and nothing's been shown to change the course of it for more than a few lucky souls.
     
  9. @Dechi Sorry for long delay! Dr Hyde was an amazing doctor in the sense of uncovering. I had nearly every test imaginable done, and got some answers of what the problems are. The frustration was, there was no treatment plans or options presented. Now this could be due to the fact, there isn't any guranteed treatments available, but I wanted to try something. He is very knowledgeable and very kind. He truly gets ME and is a unique doctor. I will be forever grateful for his testing. Just wish I had a treatment action plan. How are you finding things?
     
  10. Kati

    Kati Patient in training

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    Hi @chickpea, we will hear further from dr Davis (Stanford) and the Norwegian team about what science has found, and there might even be new treatments. DR Davis said by the end of the year, and Dr Fluge and Mella's retuximab trial results are due next spring.

    If I were any unattached patients out there looking for new treatments, I would try to find a doctor they trust most and who is more likely to offer the more cutting edge treatments or clinical trials. Usually physicians offering clinical trials will pick patients from their practice first.

    If you have tried the regular treatments (Valtrex, Valcyte, LDN, oxymatrime, Imunovir) then aligning for the next step (the next treatment on the lime) might make most sense at this time.

    Best, Kati
     
    Jennifer J and Theodore like this.
  11. Dechi

    Dechi Senior Member

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    @chickpea thanks for the feedback. Just like you, I appreciate Dr Hyde very much. The only thing is he doesn't practice full-time and he is out of the country a lot. Plus, I don't have a plan B for when he retires, I am not finished testing and it worries me.

    My spect scan has shown significant hypoperfusion, just like you. I am awaiting for an MRi in a few weeks and still waiting for an appointment to do a gastric biopsy.

    Dr Hyde is the detective kind, mainly. He finds out what you have but doesn't treat. He will however send you to the best specialists if they can help. I owe him a lot, my current GP does nothing for me.
     
  12. Alvin2

    Alvin2 Senior Member

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    How did you get appointments with these doctors?
     
  13. Dechi

    Dechi Senior Member

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    @Alvin2 Dr Hyde takes about 10-20 new patients per year. Check out his website www.nightingale.ca

    You will find all the infos you need to contact his office.
     
  14. Alvin2

    Alvin2 Senior Member

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    I did, never heard back :(
     
    Theodore likes this.
  15. Kati

    Kati Patient in training

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    This is exactly why we need a medical specialty caring for us. Family practice is not going to do any more than ordering standard blood work, doing annual exam and offer routine vaccination.
     
    Sancar, Joh and Webdog like this.
  16. @Alvin2 Dr Bested was back in 2005-2007 when she had an office in Toronto, On. From what I can telll, she closed that office, moved to Vancouver to try and set up a ME office there and for whatever reason that is closed and I no longer know where she is or what she is doing sadly. Dr Hyde is tricky, he is basically part time and I only got in I think because at the time, I lived near Ottawa and kept calling until one day HE actually picked up the phone and I told him how long I'd been sick etc and he agreed to take me on. Like I said though, for me, neither doc was actually able to help me improve sadly. It's very frustrating.
     
  17. @Dechi I totally agree. That's great you got the scan, it will help for Disability route too. I'm now in the States, but try in keep in touch with Dr Hyde every time I go home. He really is in the know and I pray he will find something before he retires....or passes away, I feel like he will be searching for us until the end. The GP are truly useless, it's so frustrating and appalling the lack of medical help in both countries. I thought moving to the States I'd find better care, but it is SO expensive, in with private health care. Keep me posted on your journey, I'm very curious. Hyde sent my stomach biopsy to Dr Chia and it confirmed retroviruses...that may be the route I go next. Good luck and keep in touch!
     
    Dechi likes this.
  18. Dechi

    Dechi Senior Member

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    @chickpea I will try to keep in touch, but I have very bad memory so do please forgive me if I forget... :-(

    Dr Hyde thinks I may have enterovirus 68. I will certainly post about it when I find out. Thanks and good luck to you too !
     
    Sancar likes this.
  19. fireflymd

    fireflymd

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    Daffodil, what did Dr. DeMeirleir treat you with that provided improvement?
     
    Dechi likes this.
  20. Butydoc

    Butydoc President

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    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
     

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