The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Finding an Open-Minded Local Doctor

Discussion in 'ME/CFS Doctors' started by JaimeS, May 11, 2015.

  1. JaimeS

    JaimeS Senior Member

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    This was initially going to be a post to answer a question posted by @cman89 , but then I realized it was quite off-topic (the initial topic was to do with epinephrine!) so I moved it to a new thread and replied here.

    I would love to hear other people's take on the same topic. I think this is something that a lot of newbies could use some help with, so please share your knowledge and experience here!

    Original posted question:

    @cman89 then said,

    And my answer:

    First, I went onto a rate-my-doc site and looked for people who listed themselves as internists rather than GPs. I probably got that idea by reading something on here - I was a lurker long before I was a poster. After reading comments on the rate-doc site like "they really listen" and "they take time to explain", I called a few offices. In several, the staff seemed surly and uncooperative. One office never called me back; I suppose their patients are not that important to them. Lack of communication is a pretty good indicator of a lack of general interest.

    Finally, I rang offices where the person who took my call was the mother of an old student of mine. A student who'd been a little difficult, but we'd gotten along well. Mother heard I'd had son as a student, said, "...oh, I'm sorry." I was struck with offense on the child's behalf. This kid was quirky but good-hearted, of the bright ADHD variety. But she'd obviously been trained by circumstance to believe that everyone but her found him to be a trial. I rushed to assure her that he hadn't been any real trouble, and that he was a bright kid with a sweet nature and that's all that really matters, and I'm sure he's continued to get good grades and do well. There was a pause, followed by a heartfelt, "...and what can I do for you?"

    Sometimes karma is real. :redface:

    I told her I was having real issues, and I needed someone bright, research-oriented and collaborative, who was willing to talk things out. She was able to direct me to the best person in her already highly-rated practice, and she seemed very sure: "oh, you want Doctor X!" Me: "...you think so?" Her: "...oh absolutely, that's exactly who you're talking about." And she was right. I won the doctor lottery, especially for my podunk little area.

    Even if you can't have this kind of luck, you can still go to a doctor rating site and look for local internists who come highly rated and call their offices (or drive by/stop by) to see if they have a good feel - staff who like working there, good working environment, an energy that seems to be of the push-forward, do-better variety. My previous GP is highly rated on those sites despite being condescending, narrow, and quite certain of his genius-level expertise despite all evidence to the contrary, lol, so you also want to talk to someone and ask for investigative, open-minded qualities in particular, and you definitely want to visit or call so you can get a feel for the place. Your instincts will tell you a lot.

    Even if you are being seen by one of the ME experts, it's VERY helpful to have someone local to touch base with.

    -J
     
  2. Lacey

    Lacey

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    Having been to a few terrible doctors in search of a decent one (and having to do this again, for my "every day needs" GP, though this matters less than the specialist doc treats CFS etc but has now just moved overseas and also can't get me funded meds, but I still need a GP), I'd like to see a system where we only had to pay the doctor if they treated us well on the visit.

    I've had some bad experiences.

    I'm doing what you suggested above - ringing around and talking to the reception staff - if they are pleasant and helpful then it's definitely a good sign, but the only true test is once we're in the office with that new doctor.
     
    JaimeS likes this.
  3. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    For a local doctor, I would advise finding one who does house calls. Or somebody who sees patients in nursing homes. Or somebody who sees geriatric patients.

    These doctors are more aware of disabilities. Though they may not know mecfs, they can see the profound disability of this illness, and be open to it - and over time, learn about it.
     
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  4. cman89

    cman89 Senior Member

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    In this vein, do you swear by Naturopaths, allopaths, chiros, etc...?
     
  5. cman89

    cman89 Senior Member

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    In other words, exclusivity?
     
  6. minkeygirl

    minkeygirl But I Look So Good.

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    I googled and found a great NP near me who Skypes. She is not perfect but she knows far more than any doc in my medicare HMO. She treats my viruses, immune issues and infections with supplements and medications and anything else that may come up.

    She supports the crazy stuff I do, she's compassionate and has no ego.

    The likelihood of finding someone who can spend hours researching, who makes house calls, (really?) and gets disabilities is slim. I wouldn't want a gerontologist. All because they understand age related disability doesn't mean they have a clue about us.
     
  7. JaimeS

    JaimeS Senior Member

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    I don't rely on one 'school' of doctors exclusively, @cman89. The doc I have is an internist, and an MD. NPs seem more likely to be open-minded, though, and osteopaths as well. However:

    I went to see an herbal practitioner. I like herbs as meds for various reasons I won't get into here, but I went with a student practitioner at my old school, and she really wasn't scientifically literate enough to be seeing anyone. I said "nothing serotinergic, and nothing corticotrophic" and explained my reaction to such substances. Unfortunately, she was one of those alternative practitioners who went into the field and believed she wouldn't need the hard sciences. I have very little patience with that mindset.

    What did I get? I got a formula with lots of serotinergic and corticotrophic herbs, because they were adaptogens, and her training told her burnt out adrenals = supplement with adaptogens. She ignored the science altogether or worse, thought the herbs would be gentler, simply because they were herbs.

    I never put anything into my body without doing the equivalent of a research paper on it.

    And the moral of the story (!) is that just because someone is outside of the mainstream doesn't mean they'll be any more helpful than someone knee deep in the mainstream. ;)

    -J
     
  8. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I would add NPs to that list - they are usually more understanding than physicians.
     
  9. cman89

    cman89 Senior Member

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    "nothing serotinergic, and nothing corticotrophic"- what were some of the herbs that were in fact prescribed that fell into this category? I assume stimulants?
     
  10. JaimeS

    JaimeS Senior Member

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    The serotinergic ones were stimulant for me, @cman89, but adaptogens are theoretically gentle normalizers. For normal people. ;) They work on the HPA axis somewhere.

    Adaptogens include Withania somnifera, Panax quinquefolius (P. ginseng is a little excitatory in my opinion), Schizandra, Astragalus, reishii, and liquorice.

    Latin --> English as I'm running out of energy. :)

    Excellent book on the topic is Winston's Adaptogens: Herbs for Strength, Stamina and Stress Relief. Section on Nootropics in there too.

    [Edit: I should say this is a PRIMER on the topic. Anyone truly interested in the pharmacology of plants probably wants Wichtl's Herbal Drugs and Phytopharmaceuticals, although it is sadly deficient in New World plants.]

    -J
     
    Last edited: May 12, 2015
  11. Misfit Toy

    Misfit Toy Senior Member

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    I need both meds and supplements. ND's are too holistic minded and don't believe in meds and many MD's are not really into natural remedies. My acupuncturist believes that only she can help me, every ND I have ever gone to says they can cure me, every homeopath makes me sicker than a dog.

    I love my CFS doc but he only has 20 minutes to cover my 50 problems. If he had more time he would be the winner. A lot of times I go in and tell him what tests I want, what meds I want to try and he is so eager to get me better that he listens, which is really what all of us need. He is the winner actually. And there are a few times he has messed me up, but the thing is...he tries more than anyone.

    I believe in all treatments at different times. I have never found one to be better than another. Sometimes meds are the only thing that works, sometimes supplements can help, but rarely-to be honest. Right now, magnesium shots with taurine are so helping my pain. My doc prescribed them thanks to a member on here. I get so much info from here. Thank you, PR.

    Sometimes herbs can help. TCM has pulled me out of the abyss at times, but cured me...nope.

    I think that each have there place.

    I think the only think I haven't tried is witchcraft and that might just be next! :eek:
     
    Jennifer J likes this.
  12. Gingergrrl

    Gingergrrl Senior Member

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    I do not have a local GP doctor and have given up that I will ever find one in my city. I have a semi local cardio but feel he is useless at this point. I am attempting to re-establish care with my former ND out of desperation to get tested and treated or referred to someone for mold issues. my CFS specialist is 6-7 hours away and I am now too ill to make the trip to see him in June.
     
    Jennifer J likes this.
  13. SickOfSickness

    SickOfSickness Senior Member

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    I desperately need a good primary care physician. I used to think I could make do with one who usually prescribed/ordered what I wanted (since I could provide good reasons). I can't anymore.

    It's hard for me to ride in a car, but I can do it, for a good doctor.

    I wish I had more money to spend on doctors. I believe it would make so much difference in my care.

    Whenever I move, the availability of good doctors is a big deciding factor.
     
    Last edited: May 12, 2015
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  14. JaimeS

    JaimeS Senior Member

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    @Gingergrrl - I'm so sorry. It's the worst when you can't find someone. I really thought it could be anyone at first, like @SickOfSickness says, but like s/he says, you eventually realize that's not going to cut it.

    It's so important to speak to someone on the phone or visit. My first call went something like this:

    Me: Hello. Listen, I have a chronic health condition. I would really like to speak with the doctor for five minutes on the phone so I can get a good feel for their work. I don't have a rash or the flu - this is someone I need to be able to work with long-term. So it's very important to me that the doctor be someone I can really work well with.
    Receptionist: ....
    Me: ...would that be possible?
    Receptionist: ...I can set up an appointment for you?
    Me: ...I don't want an appointment. I would like to speak with the doctor for just five minutes. I could swing by between patients and see if s/he has time for a quick chat in person, if that's better.
    Receptionist: ...
    Me: ...whenever would be good for them.
    Receptionist: [finally processes request] This isn't what we normally do.
    Me: I'm well aware. Unfortunately, I have a complex, multi-system issue, so I can't do the normal thing.
    Receptionist: You could get an appointment and see if you like the doctor... or you could go online to a doctor referral site to see if other people have recommended -
    Me: I'm sure the doctor is fantastic. I haven't heard bad things about the doctor. I've heard good things. That's why I'm calling.
    Receptionist: [relieved] Oh!
    Me: But my insurance has it set up that I can only see a GP a certain number of times a year. If it doesn't work out with this doctor, I can't just shop for another one. I'm done for six months.
    Receptionist: Hold on, let me see... [insert elevator music here] ...the doctor says we don't do things like that.
    Me: Of course not.
    Receptionist: Could I set you up an appointment?

    Putting this in script format makes it seem even more farcical, along the lines of Rosencrantz and Guildenstern are Dead.

    It was that personal help from the woman whose son I taught that made me sure this was my doctor. Without that personal recommendation, I feel pretty sure I would have missed out... again. You gotta know someone on the inside. ;)

    I'm seeing her again this week, and I'm very hopeful that she will continue to live up to my expectations. Her only issue as I see it is that she doesn't feel justified in examining some of the more specialized stuff. Like, I need GH injections probably (but it would be nice to talk to an endo about it!) but she would just refer me to a random endo regarding that. And since she's new to the area, she doesn't have the first clue about who's any good.

    Regardless, she talks things through with me, is aware of what I'm taking and what I'm sensitive to, and does not believe my physical ailments translate to a mental illness. At this point, she IS the holy grail of docs.

    -J
     
  15. SickOfSickness

    SickOfSickness Senior Member

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    I laughed out loud at this. Your script is completely true to life.

    But it's sad that you only found one through luck of knowing someone. I need some luck here because I am :bang-head: :cry: and that only makes me worse.
     
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  16. JaimeS

    JaimeS Senior Member

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    @SickOfSickness : http://www.healthgrades.com/

    Enter your area. Search for internists rather than people who call themselves GPs, in your area. Being attached to / associated with a decent hospital is good. Call around when you have the energy and see if you can talk to receptionists or visit. We have all been burned again and again, but don't give up on finding someone who, even if they aren't an expert, can at least stand in your corner!

    -J
     
    Anju likes this.

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