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Disappointing Visit to Dr. Montoya's PA

Discussion in 'ME/CFS Doctors' started by BellaSC, Mar 1, 2016.

  1. BellaSC

    BellaSC

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    I feel as if I'm at a new crossroads after 8 years with CFS....I would love feedback/ support.
    Ive been a patient of Dr. Jose Montoya at Stanford for 8 years now.

    Last week I had a follow-up visit with one of his PA's -Physicians Assistant who specializes in CFS.
    Definitely not what I would expect from a Chronic Fatigue practitioner at all....and Ive seen her many times before.
    After she asked me how I was doing and I explained that I spend at least 50% of my waking time in bed, she expressed surprise. REALLY??!! You're a Chronic Fatigue Practitioner and you're surprised that I'm in bed
    this much??! I was so unbelievably disappointed and have never felt so dismissed and depressed since I was diagnosed. She also asked if I was on disability. YES, Ive been on disability ever since you've known me.
    She somehow acted like I was still so sick because I wasn't cooperating and taking the meds she and Dr Montoya had prescribed. I don't do well at all with meds and had a horrible reaction to an anti-inflammatory they prescribed last year. It changed my personality and I started to lose my hair. So not a big fan of random meds.

    She had prescribed Naltrexone months ago and I had a horrible experience when I took it as directed- at bedtime. I was lucky if I slept 4 hours that night. It took me a week to recover.
    So after my visit last week and now feeling very insecure about being on SSDI, my illness and the lack of support I just experienced, I decided to have another go with the Naltrexone. I took it this time during the day and became horribly unbelieveably sick. Nausea like Ive not experienced before. All I could do was get into bed and hope I didn't die. It was THAT bad!! At one point I thought if I did die, that I'd certainly feel better.

    So I'm wondering what others experience has been with Dr Montoya and his team over the last year or so?
    Ive been very disappointed.
    The last time I actually saw Dr. Montoya I had to wait almost 2 hours and when he finally came in to see me, one of his staff kept interrupting to tell him when and where the staff meeting was that he was now running late for. I was angry to say the least and did not feel cared for nor very important as his patient.
    The last thing I thought Id be dealing with is feeling unsupported and dismissed by Chronic Fatigue practitioners.
     
    Sancar, PhoenixDown, MeSci and 12 others like this.
  2. roller

    roller wiggle jiggle

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    perhaps you can try taking ginger with the naltrexone.
    the opioid system and substance P are (somehow) strongly related, faik.
     
    ebethc and BellaSC like this.
  3. BellaSC

    BellaSC

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    Thanks for your suggestion @roller.
    I did make some ginger tea..... and after speaking with the pharmacist, he recommended starting at the lowest possible dose of .5 mg. I haven't been able to get myself to take it again. Yet.
     
    MEMum, Little Bluestem and Misfit Toy like this.
  4. Sushi

    Sushi Senior Member Albuquerque

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    What dose did you have the bad reaction to? Many need to start with a very low dose and have bad reactions to higher doses in the beginning.
     
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  5. Mary

    Mary Senior Member

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    @BellaSC - I'm really sorry to hear about the PA - yes, she of all people should not be so clueless, I expect that from regular MDs, not a supposed CFS specialist, which makes it much worse and much harder to take. I wish so badly that some of these people could spend one day in our shoes, or even just an hour!

    I had a bad reaction to naltrexone. I first took it 6 years ago and it made me very spacey such that I couldn't function properly (I think I was on 1.5 mg., can't remember exactly), I stuck it out for several days and finally gave up.

    I retried it about 6 months ago and this time it wiped me out badly, drained all my limited energy. I started at 1.5 mg., then cut that in half after a couple of day, and then in half again, and after 10 days I was completely exhausted (even though I was sleeping okay) so I just stopped it, figured it wasn't for me. It does help some people but it's not for everyone.
     
    BellaSC likes this.
  6. ahmo

    ahmo Senior Member

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    So sorry you've had this terrible experience. You can take LDN in the morning, maybe later shift to night, or not. I started w/ match-stick size doses, after opening the capsule. I still had some detox response, even with such a tiny amount. I increased by that small amount each day, eventually reaching .5mg. take it really slowly. If it works for you, you'll have discovered a wonderful anti-inflammatory. good luck.:hug:
     
    MEMum, BellaSC, Valentijn and 2 others like this.
  7. aquariusgirl

    aquariusgirl Senior Member

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    Try taking binders when the nausea comes on. Pectasol. Glaucomann Etc
     
    BellaSC likes this.
  8. Misfit Toy

    Misfit Toy Senior Member

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    I'm really sorry you had that experience. Can you tell Dr. Montoya? I think these specialists do give a lot of meds, correct? That's why I can't see them, really. Anyway, you shouldn't have been treated that way and it's weird for a specialist who probably isn't cheap to have that kind of staff.

    I did horrible on LDN but may try it again, in the AM, super low dose. Maybe. I could not sleep at all on that stuff.

    You are not alone. I just had my thyroid removed and the surgeon didn't even see me prior to, or after the surgery. How's that one for you? These healthcare professionals need a bleeping PULSE.
     
    Sidney, actup, MEMum and 1 other person like this.
  9. JES

    JES Senior Member

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    It is unfortunate that you had so bad side effects from the medication. LDN is ranked as the best pharmacological treatment by CFS by patients on this site, so there is a good reason why it gets prescribed. It also typically has very low side effect profile (consider that drug addicts are prescribed 50 mg dosage). I started with 0.5 mg and moved up to 1.5 mg in a week or two. The only side effect I had was a bit decreased sleep quality for the first few days, but after that it actually improved my deep sleep somewhat.
     
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  10. bertiedog

    bertiedog Senior Member

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    I disagree with what you have said here. I tried LDN at around 1 mg or as bit less for 6 months and virtually every time I took it it made me feel space and dizzy just like @BellaSC described. I didn't experience nausea. I got no benefits whatsoever from it but I did get more migraines. I can have periods of doing well anyway so at times I might have thought it was helping me but then I would have bad periods too so over time I could see there were no benefits and the way if made me feel within an hour of taking it was horrible and anxiety provoking something I don't normally suffer with.

    We are all different that is for sure and what suits one does not suit everybody. Just because you tolerated it well doesn't mean we will all be like that. As I said above I gave it 6 months with no benefits.

    Pam
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I had a bad experience with LDN as well but I do not tolerate many meds that others do. I also had a very bad experience with a so called ME/CFS expert (not Montoya and I have never been to his clinic) so do not take it personally. It was disappointing but I moved on to see another doctor who was great. Am not going to mention any names, only that I relate to your experience.
     
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  12. Sidereal

    Sidereal Senior Member

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    Sorry to hear you've had such a bad experience at the clinic. I also had a terrible reaction to LDN when taken at bedtime. Could not sleep AT ALL. Switching to a really low dose and taking it in the morning seems to work for some but for me the side effects (vertigo) outweighed the benefits so eventually I gave up on this drug.
     
    BellaSC likes this.
  13. Daffodil

    Daffodil Senior Member

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    @BellaSC hi bella. sounds like an awful visit. any chance of changing doctors?
     
    MEMum and BellaSC like this.
  14. roller

    roller wiggle jiggle

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    i think she takes naltrexone, not ldn.
     
  15. JES

    JES Senior Member

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    From what I've read LDN works better for certain autoimmune conditions like MS and fibromyalgia than for CFS. Still, it doesn't change the fact that it's ranked number one on a CFS patient survey and in general is well tolerated compared to other drugs. A few years ago it would have been impossible to get LDN prescribed for any condition in my country, but now many pharmacies mass produce it.

    I think the problem is that people on this forum tend to be very ill and LDN isn't a miracle drug, but rather something that offers mild improvement at best.
     
    MEMum and BellaSC like this.
  16. Sushi

    Sushi Senior Member Albuquerque

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    LDN = low dose naltrexone.
     
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  17. roller

    roller wiggle jiggle

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    yes, i know.
    but naltrexone is very different from ldn and imo the dose cant be just lowered/upped (as possibly with ldn)
    its quite complicated even...

    i think the effects of ldn and naltrexone are quite different.
    even though the same substance.
     
    Last edited by a moderator: Mar 2, 2016
    BellaSC likes this.
  18. BellaSC

    BellaSC

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    I was originally prescribed a dose of 4.5 mg....The dosage was changed to a super low dose of .5mg. I just haven't been able to get myself to take it after having such bad reactions to it both times I took the 4.5mg.
     
    Last edited by a moderator: Mar 2, 2016
  19. BellaSC

    BellaSC

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    I was told by the pharmacist that Naltrexone actually affects the immune system and rebuilds T-Cells.
     
  20. BellaSC

    BellaSC

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    I could possibly change doctors....I also see Dr. John Chia who is fantastic and will see him at the end of this month. The only other option locally to me is Dr. Kogelnick and Kaufman and they don't take insurance. As I'm on SSDI I have Medicare for insurance.
    The initial visit to Dr's Kaufman and Kogelnick are $455. and follow-ups are $355. That's a LOT of money when you're on SSDI with no other support.
     
    actup and ukxmrv like this.

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