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Letter to my Doctor

Discussion in 'ME/CFS Doctors' started by creekfeet, Mar 22, 2010.

  1. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    After much consideration I drafted the following letter to my doctor. I'd welcome any thoughts on it, before I send it.

    Thank you again for our appointment on the 19th of February. As you requested I have been considering your advice to try Celexa to reduce symptoms of fibromyalgia and chronic fatigue syndrome. I am concerned about this medication’s tendency to cause nausea as a side effect. I am already experiencing some nausea; more would decrease my already compromised ability to care for my children and myself. My reactions to very low doses of medications tried already indicates some sensitivity, and therefore the advisability of proceeding with the utmost caution.

    I do want to proceed with treatment, and am impatient to find anything that would bring relief both to myself and to my 16-year-old son who is suffering from CFS and Firbomyalgia to the extent that he’s mostly bedridden. In such sensitive and painful condition, however, I would repeat that our treatment must follow a path of caution.

    To me, “proceed with caution” would mean to avoid the style of prescription that I have so far met with for this condition: X medicine has helped a percentage of patients, so let’s try it and see if it helps you, and if the side-effects are intolerable we’ll stop. Trial and error, along with stress, have already worsened my condition since it was first diagnosed.

    In a positive sense, to “proceed with caution” suggests a more science-based approach. Specialists who have seen hundreds of patients over decades have created a consensus on diagnosis and treatment which includes suggested testing specific to the systems effected by chronic fatigue syndrome. I enclose for your consideration a copy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners. If you would kindly pay particular attention to pages 8-9 and page 18, you will see the broad range and specificity of tests suggested. Running as many of these tests as possible on both myself and my son would provide us with a fair picture of the specific systems that are effected in our two cases, and treatment plans could then be devised which would address exact deficiencies, weaknesses, needs.

    I am seeking appointments with a specialist, Dr. Dan Peterson in Incline Village, who has experience running these types of tests on many ME/CFS and fibromyalgia patients and familiarity with patterns of presentation and responses to treatment. I don’t know if or when I will be able to get appointments with Dr. Peterson for myself and my son. Whether or not we are seen by Dr. Peterson, I would be grateful for your involvement in our ongoing care locally, particularly if you have time to familiarize yourself with the document enclosed.
  2. Kati

    Kati Patient in training

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    Creekfeet, this is a fantastic letter, very respectful and professional. There is no suggestion from my part other than sending it as soon as possible!!!

    Of note, the Canadian Consensus will become out of date when the latest XMRV studies turn out to be in our favor. I hope that your doctor is aware of this development and is willing to dig a bit deeper than the usual flu and annual check up.

    I cross my fingers for you.
  3. _Kim_

    _Kim_ Guest

    Nice work creekfeet.

    There is only one sentence that I think can be improved upon:



    How about: My previous reactions to low dosages of medications suggest drug sensitivities, and therefore, it would be prudent to proceed with the utmost caution.
  4. creekfeet

    creekfeet Sockfeet

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    Oh yes, Kati, you can bet I'll be keeping my doc aware of XMRV progress. And thanks, glad you liked the letter.

    Kim, that is a fabulous edit. I have plugged in your sentence verbatim instead of the clunky one I had.

    I'm still welcoming any additional comments. This will go out tomorrow at the soonest, and maybe a few days later. I need to look at it with the clearest brain I can get for one final proofreading, and I think I could use a couple of days rest before that final proof.

    Thanks!
  5. _Kim_

    _Kim_ Guest

    creekfeet,

    One more read-through and I have another suggestion:

  6. creekfeet

    creekfeet Sockfeet

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    Good thoughts, again, Kim! Thanks.

    Odd that I didn't say eager. I always used that word instead of impatient when my kids were small and tugging at me. "I know you're very eager..." So I will definitely make that change.

    Yes, we'll both be seen by this doc though my son hasn't been yet so I might clarify that a bit.

    I'll have to think over the thing about Peterson; hoping they'll call me back tomorrow and give me a better idea of what I might hope for. Since it is probably longshot, maybe I should indeed leave it out. I'll see. Ideally though the tests would be ordered and interpreted by Peterson. I really believe that after reading Corinne's series about seeing him, and what she had to say about the way he interprets tests.

    I kinda went into the letter with an attitude of knowing what I want and imagining I can get it.
  7. JT1024

    JT1024 Senior Member

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    Massachusetts
    Hi Creekfeet,

    I think your letter to your doctor is great. Regarding the Celexa, I found some information on Patientslikeme.com (PLM) that you might find helpful:

    http://www.patientslikeme.com/treatments/show/26-celexa

    I hope you and your son get to see Dr. Peterson soon!

    ~ JT
  8. creekfeet

    creekfeet Sockfeet

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    Thanks, JT! I tried and didn't find anything very relevant on PLM before. What you've linked is excellent. Looks to me like Celexa works for depression and anxiety which I don't have, not so good for fatigue and pain which I do have, and its most common side effects are fatigue, brain fog and dizziness which I already have. >< Forewarned is not taking any damn celexa.

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