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Do I need an ME/CFIDS doctor?

Discussion in 'ME/CFS Doctors' started by iwantsimple, Oct 19, 2011.

  1. iwantsimple

    iwantsimple

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    I live in Fresno, California, and I see a general practitioner for my CFIDS/ME. We focus on alleviating symptoms. I'm 1 year into the disease.

    Should I seek out a doctor who specializes in CFIDS/ME? If so, who would you recommend? I'm willing to participate in studies, etc... I just don't know if seeing a specialist would even make any difference.

    Your thoughts? Recommendations?

    THANKS! :)
  2. Esther12

    Esther12 Senior Member

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    Probably not. It's important to try to have yourself checked out for alternative diagnosis's, but I'm not sure if it's worth going to great trouble/expense to see a CFS specialist - it depends upon your own circumstances though.

    Hopefully someone with appropriate local knowledge will have some advice too. Good luck with it all.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Depending on the specialist you see, I would recommend seeing one who has a good track record at helping patients. It would be a big financial investment, but it could also protect you from treatments that might cause you harm....and you might find a treatment that actually helps and prevents further damage. Being only one year into the illness, you have better recovery chances than if you had had it for a very long time.

    I don't know the docs in your area, but I'm sure others here do and might give you a recommendation. The trick is to be very selective and learn how such a specialist treats his/her patients, whether a good proportion are getting better and whether that approach "suits" you.

    I personally see a specialist and am glad of it, though not anywhere near your area.

    Best wishes in this hard decision.

    Sushi
  4. iwantsimple

    iwantsimple

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    Thank you for your replies. I'm looking forward to hearing from anyone in California, too! Thank you!
  5. markmc20001

    markmc20001 Guest

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    Hi Michelle.

    I don't know how many "CFS" specialists exist in this world truthfully. One thing is for sure, your regular doctor is going to get you knowhere with this disease. It might get you some really lousy CBT, but that is about it.

    I'll tell you what I wish I had done along time ago. Get a good battery of tests to determine what kinds of infections I had. You need a CFS doc for that. I think Dr Jose Montoya of standford was doing that for free during a trial, but I don't know if it is still going on. That might help give direction as what to treat.

    In my mind, first suspect is Lyme. I think it is a epidemic. I saw a couple so called CFS docs in northern california, and not one has considered Lyme. Lyme is probably the first suspect in my mind.

    One doc isn't going to do it. You might have to try one two or three to get a feel for what direction to go.

    I would stay away from prescription meds whenever possible, I got a screwed up stomach from some prescription stuff. I would stay with supplements as much as possible. Even then you can get screwed up too. However, you might need some antivirals or ABX to treat infections. BUt do it as an absolute last resort in my mind. Also be very careful with chelators in my mind. They might some people a little good, but use caution.

    I'm going to see a naturopath, or acupunchusits next.

    Good luck, and I often give bad advice so please do your homework.

    I would suggest trying to find a support group too, That should help you figure out what is working in your area.

    Good luck.
    Mark
  6. iwantsimple

    iwantsimple

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    I guess I am lucky in that my doc did test for Lyme and a bunch of other viruses, as well. She found a very high Epstein-Barr number (had Mono 20 years ago, so the antibodies will always test high, she said), and she found a high ANA and CH-50. Also, she found very high numbers for Candida, which we treated with anti-fungals for months and finally got under control. She is really, really willing to follow my lead on any tests I want to have done, so if you have a list of anything you think I should be tested for, please do share! At this point, I am only treating symptoms (pain and sleep) with mobic and ambien.

    Does Dr. Montoya take new patients? 2 hours away from San Francisco, 3 hours away from Tahoe, and 4 hours away from LA. So, I *could* travel to a doc...
  7. markmc20001

    markmc20001 Guest

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    HI MIchelle. I have no idea what I was tested for actually, but apparently there is a lot of stuff to check for.

    It is hard to get in to see Montoya I think. Somebody told me It takes two years to see him.

    I would also be aware that most of these guys can be bankruptingly expensive and insurance rarely covers what they charge. They can write their own checks because they are in such demand and take extra risk with treating such a group.

    I wouldn't do phone consults if you are are on disability, because that will screw you up for sure. Your realtionship with your doc, and your benefits provider. It's all about trust, and soon as your doctor doesn;t trust you, or support you, it will make you suicidal when you rely on disability benefits to keep a roof over your head.

    That being said, I think Gordon Medical Group has a good group of doctors and might be worth looking in to. I haven't beenthere, but they have a website.

    Everybody is different, (and my guess is) probably does best on a tailored treatment that they develop with what they learn from a mixture of other patients, personal research on the internet, and with a good doctors(and naturopaths) guidance/direction/oversight. One guy had an infected tooth that was causing all his problems! Doubt many doctors would pick that up!
  8. markmc20001

    markmc20001 Guest

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  9. iwantsimple

    iwantsimple

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    Trust between patient and doctor is crucial, I agree. I have a great relationship with my doctor, and I don't want to step away from that at all. I'm thinking that maybe I will simply bring her the info I find. She is definitely willing to learn about CFS.

    I'm curious: what does a neuropath do?
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  11. November Girl

    November Girl Senior Member

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    You're not that far from Dr. Peterson at Incline Village, Nevada. There is a series somewhere here on the forum written by Corinne detailing her 4 visits with him. I think that most of the big docs will work with your local physician to an extent. That is definitely a question worth asking. I think that having a local doc who is willing to learn, and a CFS specialist would be ideal. I have the first, and hope to see Dr. Klimas in Miami next year.

    I think the big advantage of a specialist is that they know what to look at.
  12. Hope123

    Hope123 Senior Member

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    Just wanted to note, contrary to maybe what some people think, Peterson, Montoya, and Klimas all take some private insurance (check with your insurance and their offices) and Medicare also. So do some of the other big name CFS specialists. And they aren't as expensive out-of-pocket [talking about visits here - labs and treatment will vary and add to your cost] as you might expect when compared to some practitioners who don't take any insurance. The major obstacles to seeing them often are ability to travel and long waiting lists.

    Other than knowledge and experience, the three above are also ethical and not into price gouging. I'm pretty skeptical about a lot of practitioners and my feeling has been that many CFS specialists not only price their services far beyond what many people can afford but also earn money from medicine, services, treatments that they prescribe, sometimes without clear disclosure. I am not saying that they shouldn't earn a fair income from their work but there is fair and then there is outrageous.

    You should also keep your primary care physician as you will need him/ her to take care of your regular health needs and to monitor you closely. The specialists are usually too busy to handle other health issues outside CFS and in fact, both Klimas and Montoya necessitate that people have a primary care doc.
    merylg and WillowJ like this.
  13. Flurrywinde

    Flurrywinde

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    Sorry for resurrecting an old thread, but I just moved to the Fresno area (Coarsegold, actually). Iwantsimple, have you had any luck finding anyone? Also, this doctor of yours sounds good. What's her name?
  14. iwantsimple

    iwantsimple

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    Hi, Flurry. I never found a CFS specialist, and after more testing, it turned out I have Lupus and Antiphospholipid Syndrome, but I can recommend an excellent doctor. Her name is Dr. Karen Hansen-Smith. She is a concierge doctor, meaning you have to pay her 125/mo regardless of insurance. For that, you get to actually talk to her, get appointments usually the same day, spend as much time as you need (usually, I am with her for 30 minutes to an hour), call her directly and actually speak to her the same day, email her, text her, contact her on weekends, whatever you need. Totally worth the 125/month. Here's a link to her website: http://www.hansen-smith.com/ I've been with her for a couple of years now, and I can say for sure that that the contingency fee is WELL worth the cost. If I had gone through regular doctors, I would still be very ill and have no answers or treatment. Now, while I'm still ill, I have answers, medications, and hope! Good luck! :)Michelle
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  15. lnester7

    lnester7 Seven

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    I would go to one or somebody who understand CFS! The money I spent on supplements trying things!! and the Dr sent me back and forth to every imaginable specialty. You loose too much time and energy!! So wherever and whatever can cover the most with the minimal effort.

    Not counting that following the "elimination process" took 5 years to diagnose me and is just too much of an inefficient way to do it and expensive. A person who knows what they are doing, will be the fastest way to get what things are wrong and have the elimination done the fastest. My humble opinion.
  16. Flurrywinde

    Flurrywinde

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    Thanks for the great info! Are tests or drugs covered by Medi-Cal or Medicare when you see Dr. Hansen-Smith? Is she the same doctor you describe above as being open to all the things you wanted to try? That's what I need.

    $125/month might be a bit high for me, but I'll do it if I have to. Inester7, you have a really good point too. I'm in a 22 year elimination process myself, spending hundreds per month on supplements. I'm hoping a doctor will run the tests to help me decide what's helping and what isn't. Even better would be a CFS specialist, of course, so I'm looking for that too. Given that I can't afford anything if it's not covered by Medi-Cal or Medicare, though, I'll settle for the best I can get with what I have.

    Iwantsimple, have you heard about the connection between autoimmune diseases like lupus to gut dysbiosis? From what I've researched lately, fixing the gut might help you a lot.
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  18. WillowJ

    WillowJ Senior Member

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    I know this is an old question, but because it was posted to the thread and not answered, I thought I would answer.

    In the US, it depends on one's state. In some states just about anyone can call themselves a naturopath or Doctor of Naturopathy (ND). In other states, this is a licensed medical professional. One would need to look up the regulations in their own state. If interested in finding an ND, one can check the national licensure board (also covers Canada, Puerto Rico, and US Virgin Islands) to see whether they will have a standard education and be licensed/registered in one's area.

    In WA and OR, and ND will have gone to ND school (such as NCNM or BU) with a residency or internship or something like that, and learned human anatomy, pharmacology, and other such things like MDs learn. They will also have learned nutrition, herbal medicine, and homeopathy. And some other CAM (complimentary and alternative medicine). They may practice integrative medicine (combined Western and CAM). They will typically prescribe a mix of dietary changes; whole-food vitamins; herbal supplements; traditional prescriptions; homeopathic remedies; various alternative treatments depending on practitioner such as hydrotherapy, Bowen therapy, microcurrent therapy, Traditional Chinese Medicine, acupuncture. If lifestyle changes (e.g. exercise for non-ME patients; sleep hygiene) or supportive counselling are indicated, they will recommend that.

    An ND typically spends a lot more time listening to symptoms and trying to figure out what is going on than an MD would. However they may still have a set of ideas about categories patients fit into. These are sometimes based on tangible things (e.g. Candida) and sometimes based on far-Eastern mystical religions. One might wish to interview the practitioner or view their website and ensure one is comfortable with their approach before making any decisions.
    Valentijn likes this.
  19. JAH

    JAH Senior Member

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    Dr. Montoya does take Medicare, so he would be an option for you if you can get in. He focuses on viral infections- I would only recommend him only if you have tested positive for viruses or think you have viral infections. I would see Peterson if I were you...good luck,

    JAH
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Note: Both these doctors have long waiting lists.

    Sushi

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