Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Dealing with disbelieving doctor

Discussion in 'ME/CFS Doctors' started by lllamamom, Jan 26, 2018.

  1. Shoshana

    Shoshana Northern USA

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    Thumbs pressed ! :)

    We can add that in, to our PR list of terms. Thanks for sharing that with us, @Joh

    Even though it is not a new term, it IS new to many of us, and we like to learn from each other. :hug:

    I do not have a written Cheesus list, but I KNOW who they are! :thumbsup::lol:
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I love it!

    Thank you and if I could, there are three Neuros, a rheumy, a pulmonologist, and my former PCP that are on my Cheesus list but it is not in my best interest at this time to say anything. The worst of all the docs I mentioned, who came close to destroying my chances of getting treatment, was a Neuro at Stanford but it would truly work against me to ever contact him again and I do not intend to.

    Amen! Fingers crossed and thumbs pressed!

    Edit: Cross posted with Shoshana!
     
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  3. lllamamom

    lllamamom

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  4. Whoops

    Whoops

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    As a 6' 5" 285 lb male, I feel where you are coming from. My previous neurologist who was literally half my size did the push/pull tests and told me that I did not have any indications of weakness, I about lost it. I could have thrown this little person across the room 10 years ago. As a former avid biker, hiker and backpacker, I have always had incredible leg strength and in the past could easily max out the leg presses at the gym and do a full set at the max weight of 600 lbs without breaking a sweat. So I think it is especially funny that a puny toothpick doctor even thinks he is capable of accurately evaluating a decline in my strength. Why isn't there a more quantitative method of measuring strength and/or weakness?
     
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  5. lllamamom

    lllamamom

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    There is--however, the meters seem only to be in hand specialist's offices, or such. Everyone else relies on the ridiculous "squeeze my finger". I agree with you, Whoops, I'm not your size, but often think about the amount of hurt I could put on a doctor if I took them literally. Indeed, one snippy doctor told me I was "too strong" for my age. I just looked at him, and asked if he'd ever heard of working out. He chided me for "not going to a gym". I pointed out that the nearest gym was 50+ miles away, and the barn, with weight lifting <hay bales, poop shovels, wheelbarrows>, cardio <moving the animals, chasing the dogs, getting rid of the rattlesnakes> and endurance--too numerous to list here--was 100 yards away. And cheaper.

    I suggest that there be a coordinated campaign here in the US to bring ME to the forefront--make May 12, ME Awareness Day, something that gets covered in the local news, even if it means spending our entire "envelope" for the period. Otherwise, nothing will get done. UnRest got us started on the path--what about those of us able to, calling or writing NPR, or wherever, and saying "that's a start, but there's more of us. Here's our story..."
     
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  6. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    Excellent job of fighting back! Have you seen this new article in the New York State Family Physicians mag/journal by Mary Dimmock et. al.? We all should have a copy handy when encountering ignorant doctors for the first time!

    http://forums.phoenixrising.me/inde...n-me-by-mary-dimmick-et-al.57746/#post-956210

    Sorry for your suffering.

    RWP + PWR
     
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  7. Daffodil

    Daffodil Senior Member

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    i say, "alright" with a smile and walk out of the office. stopped trying to argue a long time ago
     
  8. lllamamom

    lllamamom

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    That is a great article!

    My GP last week asked for information. I'm giving her this article, the physician's research from me association.org.uk, and one other long article. At least she asked! Fingers crossed
     
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  9. Mel9

    Mel9 Senior Member

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    I have my copy printed out and ready
     
  10. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    That's wonderful! Hoping for the best!

    RWP + PWR
     
    alkt likes this.
  11. Stretched

    Stretched Senior Member

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    I’ll join your anger, frustration, against this doctor and his silent contingency... . I am w/o a doctor. A few years back I got referrals to try non affiliated CFS doctors.

    I called and each appointment administrator probed for my specific illness. I told them in a round about manner about “real CFS,” bypassing yuppie flu and other frivolous
    diseases. Each called back within a few days stating they didn’t treat CFS, as if they were card carrying anti-CFS club members.

    I was so livid I wanted to go by the CDC (nearby) and pick up (abscond with) some toxic neuocleotide Tiger urine or equivalent near lethal nuclear contaminated monkey poo and send it to each good doctor, smeared all over the insides of sealed plastic envelopes on top of mints. I didn’t, of course after I got over my rage,

    Instead, I decided on a mail campaign, like resume sending to another 30 prospective GPs. All neat, tidy, polite. I did not get so much as a phone reply! Well, that did it for me. I’ll learn it myself, having degrees and experience in academic publishing. I’ll tell you this, these good old boys were graduates of or affiliated with Emory Universty.

    I don’t have an answer for you but my other specialists are no way Emory affiliated. My opinion on this one is litigation, of a class action nature against the AMA and individually against the would be defendants. I think this as a group action is the only way we’re going to get legitimate international attention and respect. The problem is who we’re going to as point man to fund, and the other to run the litigation?
     
  12. lllamamom

    lllamamom

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    Hang in there, folks, there's a bit of hope. I mentioned that my GP asked for information? And that I basically flooded her. Her nurse called back today, and said "Dr. said to tell you thank you. The information entirely makes sense, especially in your case" .Hello? A tiny bit of acceptance?

    Much better, I think, than another doctor I've been trying to work with, who has decided that all CFS is diet based, or because of a recessive MTHFR gene (seems to be the latest "craze").
     
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  13. Ruthie24

    Ruthie24 Senior Member

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    I have had the same experience. I used to do those muscle tests on patients and when my neuro did one on me, I told him I had 90 year-olds who exerted more pressure than he did during my supposed strength test.

    Those muscle tests are usually used on a person with a neurological or orthopedic disorder so you can compare one side to the other and/or look for functional strength deficits. They are worthless for telling us if we have lost strength compared to our pre-illness level.

    For the record, there are dynamometers that can be used to document the number of pounds of pressure you are able to exert on a strength test but they have not caught on in most practices as they are a bit awkward to use and, although supposedly reliable, don't always seem to be.

    Most medical providers are taught by the "that's the way we've always done it" method and most are quite happy to go on practicing just that way.
     
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  14. lllamamom

    lllamamom

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    Thank you, Ruthie24, I couldn't for the life of me remember the name of the gizmo.

    As for "that's the way we've always done it"....oh, yes.

    Have to report a tiny, tiny win: walked past the arthritis doctor's office (where one supercilious jerk told me "at your age you should expect a little ache"), and noticed that the jerk is GONE off the list of providers! I stuck my head in just long enough to say hello to the nice PA-C that had tried to help, and found out that the GP I'd given the pile of information to was sharing it! There's faint hope...
     
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  15. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    That's such encouraging news! Thanks for updating us!

    RWP + PWR
     
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  16. Sundancer

    Sundancer Senior Member

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    there are two on my cheesus list, i will not go into detail. neuro and intern
    But even though that's 15 ( no 16 ) years ago, I still remember, painfully. They'll both be retired now. But I know that on the day they stand before Petrus, a frown will be their part.

    since then I have not visited a specialist and told my new GP that i will not start with it either.

    But new GP ( the old one retired) is nice. He believes I'm ill. He comes to my house so that I do not have to go out. Looks at bloodwork with me, did another thyroid because I saw a bad trend ( yes, now looking what's wrong) , listens to how I'm doing, and what, and why.

    I think, more one can not hope for in these days of MEbashing.

    Told him about Myhill, that I have an interview with her. Would he care to read that?

    Oh yes, please. So it lays here, printed. Waiting for his next visit.
     
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  17. Alexi

    Alexi

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    My list is long too.....
     
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  18. lllamamom

    lllamamom

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    Want to cry. Gave some of the current information to my functional medicine doctor, who previously seemed receptive, as I needed to go back on valacyclovir. I don't know what happened, but got essentially a backlash from her, saying no insurance would approve the suggested year of it, it was dangerous, and ill advised. HUH? I looked at the research again, and nowhere does it mention these problems. I'm in the US, where admittedly ME research and knowledge is still in the stone age, but really? Dangerous? Far fewer side effects, from what I've been reading, than the Lyrica, or other suggested meds.

    Anyone else have this backlash?
     
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  19. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    Sorry for the reaction. It seems to me that the Dr. is unfamiliar and therefore uncomfortable, worried about a bad outcome. My wife & I have been listening to a recent video from Dr. Montoya in which he discusses side effects from an antiviral (but it might be the other v-drug), but I'm not sure which. Here's the link: http://forums.phoenixrising.me/inde...feb-2018-partly-on-antiviral-treatment.58055/

    Anyway, I think he said that the reason for all the worry and warnings arose from its use in cancer patients and others who had a greater risk of complications anyway. In other words, they were overblown for ME patients.

    That may not help you with this doctor, and I seem to remember that your options were limited. And it could be the other antiviral he was talking about. BTW: There may be other threads about this info/video as well.

    Our current doctor is very risk averse as well. Again, so sorry.

    RWP + PWR
     
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  20. ChrisD

    ChrisD Senior Member

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    I hadn't had a GP appointment for over a year until yesterday and felt that it would be appropriate to have a general check-up seeing as my health is really not great, and I was hoping to have routine blood tests which I thought was sensible. I saw a Locum doctor and to be fair to them, it is tricky to achieve anything in ten minutes, and I also wasn't expecting to.

    But what I find interesting is whether we should even mention ME at the start of the appointment as it seems to turn them off immediately and if you have no new symptoms (they are really focused on symptom changes) then you receive a sort of ''well what do you want me to do for you?'' attitude. This guy was really friendly, understanding and cooperative yet also quite dismissive of the idea of ME and despite the fact that I have been through a specialist ME service, he was really hung up on the fact that I didn't have a diagnosis (which I do, but for some reason the service had been reluctant to record it). He seemed really intrigued as to why a ''27 year old male'' would be in this condition and not be working, and really innocently showed a complete lack of understanding for ME.

    I don't blame this doctor at all, and he didn't have an attitude about it that some others have experienced but I was just quite taken a back when he explained that he couldn't write me off work for benefits when there was no clinical evidence of illness, which seems like a really dated view since I thought we were supposed to be at a stage now where we were past that logic, of lack of.

    I dread the moment when they scroll back through my medical records to 4 years ago which show anxiety and depression symptoms (before ME) and in an instant decide that it's a psychiatric case. I also asked for a stool test and SIBO test, to which he questioned what symptoms I had that would require that, and I responded with ME symptoms which apparently wasn't specific enough - it just shows a complete lack of knowledge into ME research.

    Sorry I didn't want to hijack this thread but thought my story might be relevant.
     
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