Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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I finally found a doctor, and I'm now receiving treatment.

Discussion in 'General ME/CFS Discussion' started by Chriswolf, May 16, 2017.

  1. Chriswolf

    Chriswolf Senior Member

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    I found a doctor in my city who specifically takes on people in my situation, this was back in early December, I did an absolute mountain of tests from that month on until about February.

    The medications I'm now on are

    - Cortef 20-10-5mg every day (my cortisol levels were in the dr's opinion unacceptably low, he was shocked to find out that I had seen an endo two years prior and he saw roughly the same labs and did nothing).

    - Fludorcortisone (my aldosterone levels were in the basement as well, I was having serious orthostatic problems, on a good day my upright systolic blood pressure would be in the 110 range, and at that level I would still feel pretty awful.

    - Dessicated Thyroid (erfa) and Cytomel (my TSH when he tested it was almost 14, it had gotten progressively worse over the last year)

    I also have to take potassium chloride because the fludrocortisone depletes me, and I also voluntarily take vitamin k2 in order to help keep my blood pressure up during the day to reduce my dependency on fludrocortisone.

    I also had an electrocardiogram done, which confirmed some of the cardiovascular/circulatory problems I'd been having since around 2010, a part of my heart now doesn't work properly, which the doctor attributes to damage induced by extended periods of inflammation and hypothyroidism.

    I'm still not 100% but I'm doing a heck of a lot better than I was, I definitely seem to get worse when the weather gets warmer in terms of my blood pressure. I think my next diagnostic approach will be to see somebody who can help figure out of I have some kind of catecholamine disorder, as low dopamine might explain my orthostatic problems post-treatment.

    All I can tell any of you who were in my position for years is to keep faith in yourself and keep holding on until you can find somebody to help you. I had so many regular establishment shill doctors try desperately to tell me that it was all in my head and to pump me full of SSRIs. Now I have diagnostic proof that there were some very serious issues that required treatment, and I now have a history of positive response to treatment, so it will be very difficult for the government to pull the plug on them in the future.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    great to hear. Yes we often can get some improvement when we find a "good" doctor. Its sad so many of us arent getting to work with a good one.

    best luck

    ps. One bad thing Ive found is that even if one has a history of something helping, if u loose the dr you are with, you can loose the treatment being recieved as a lot of other doctors will still ignore things and what was helping. We really are often at the mercy of what drs we get
     
  3. belize44

    belize44 Senior Member

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    This is wonderful to hear! It gives me hope that my upcoming appointment will yield equally good results as well!
     
    Jennifer J, Chriswolf and Mary like this.
  4. Mary

    Mary Senior Member

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    @Chriswolf - I'm very happy for you! :thumbsup: finding a good doctor is next to impossible and many of us never manage to do so.

    Do you mind sharing what city you live in and the name of your doctor?
     
    Jennifer J likes this.
  5. Chriswolf

    Chriswolf Senior Member

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    @Mary If anyone would like to know, ask and I'll send you a PM.
     
    Mary and Jennifer J like this.
  6. justy

    justy Donate Advocate Demonstrate

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    I'm glad to hear this - good luck with the treatments.
     
    Hilary, Binkie4 and Jennifer J like this.

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