1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Help me to get ready for specialist appointment

Discussion in 'General ME/CFS News' started by lnester7, Jan 6, 2012.

  1. lnester7

    lnester7 Seven

    Messages:
    1,157
    Likes:
    1,028
    USA
    to all,

    Is there any tests or questions that you recommend I ask for my first visit to Nancy K? Any test/treatment that is out of the ordinary and that patient has to bring up??

    Thank you for the Help
    L
  2. barbc56

    barbc56 Senior Member

    Messages:
    1,282
    Likes:
    658
    Dr. Klimas may already do these tests but the following were very helpful for me.

    Ferritin level not just iron level. It can cause the same symptoms. Mine was so low and because I have RLS, and absoption problems from IBS, I had a nine hour infusion of iron which helped immensely. For RLS you need at least a reading of 120. I was 19 and it went up to 288. There's a wide range of what is normal, but depending on your health different ranges may be recommended for different health conditions.

    B12 and Vitamin D as I was low in both so needed supplementation. You have to be careful with the vitamin D. Even though I was deficient, I started with a weekly megadose of D and developed a kidney stone which may have been related. I now take the daily dose.

    Sleep study. I have sleep apnea as well as RLS and little deep stage sleep. I think everyone with our DD, should have this as most of us have some kind of sleep disorder.

    These were definitely helpful for me. Dr. Klimas probably knows the above but a lot of doctors don't do these. tests.

    As my neurologist said, while the above helped, I will always have the ME/CFS and fibromyalgia.


    Barb C. :>)

    While all these are now under control, it hasn't cured the CFS/ME but I do feel better.

See more popular forum discussions.

Share This Page