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My experience with Klimas

Discussion in 'ME/CFS Doctors' started by thegirlwiththedog, Mar 19, 2011.

  1. Kati

    Kati Patient in training

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    I got just a couple weeks worth of imunovir. Now I am on inosine, smuggled from the US. (Nancy had to laugh about how ridiculous that some of us canadians have to smuggle inosine, a perfectly legal supplement from the US)
    I take the same dosage as Hope.

    Success for me would be increase in NK Cells function. 4.6% was my latest value.
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Chris, I take AHCC, Maitake D Fraction drops also. Other immune supplements also.
  3. glenp

    glenp "and this too shall pass"

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    Thank you for posting all of the information you got from Dr. Klimas office. This is so very helpful for those who are not able to see a specialist. Its important to have a blood pressure monitor and monitor your bp and heart rate while resting, sitting, and standing and after standing for a period of time, so that you can see these differences. Most physicians are not paid to take the time to do this testing. You can google "poor mans tilt table testing' Many are not aware of this and given medications according to the reading at the doctors office which can actually be harmful to us.
  4. thegirlwiththedog

    thegirlwiththedog

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    Sorry not to have updated this in so long. My follow-up with Klimas had a ton of information, but none of it directly affected my treatment. I did much better for a while after my appointment with her, primarily because of the electrolytes, but this sumer has been pretty awful again.

    I think I've figured out why: I'm not managing to control my
    orthostatic intolerance. My guess is that my kidneys have gotten
    more efficient at eliminating sodium from my system, so that the
    quantity of electrolytes that was sufficient before is no longer. It's
    funny, though, because I've felt like electrolytes weren't helping the
    way they once were. It may be that that's just because I haven't been
    drinking enough.

    To begin to test all this, I ran my own, homegrown tilt table test. I
    lay down for ten minutes and took my blood pressure and heart rate.
    Then I stood up, standing as still as I could, and took my blood
    pressure and heart rate (except that I stupidly forgot the heart rate)
    every five minutes. I did that this afternoon, and from the morning
    onward, I'd had about 1/4 teaspoon salt and 1/4 teaspoon potassium in
    my breakfast smoothie, two glasses of Nuun, and two salt tablets (each
    containing 8% of the US RDA of sodium). After 22 minutes, my blood
    pressure had dropped to 80/60 and I stopped because I felt like I was
    going to throw up. (That was a better result, though, than when I did
    the tilt table test with Klimas, when after 8 minutes I was at 80/52.)

    Next I drank two more glasses of Nuun, and after 20 minutes I repeated
    the test. This time I passed, with my blood pressure holding steady at
    105/75.

    So it's possible that if I simply drink still more electrolytes, I'd
    be feeling a lot better. Of course, there's a question of how much I
    can make myself drink, and it seems like I'd already consumed a fair
    amount this morning. Also, if my hypothesis is correct, then if I
    increase my electrolyte intake, my kidneys will likely just get more
    efficient still, and I'll start feeling like crap again.

    So I have a four-fold plan. One is that I'm going to
    generally push the electrolytes, planning to consume at least four
    glasses of Nuun, plus my usual salt in my smoothie and salt tables.
    Two is that I'll monitor my BP frequently, and anytime I'm feeling
    crummy and my blood pressure is at 100 or below on top or 70 or below
    on bottom, I'll down some more Nuun. Three is that I'm going to repeat
    my tilt table test at other times of day. Mid to late afternoon is
    when I'm generally feeling my best. This morning, I felt truly horrible
    in a low-blood-pressure kind of way, and that was right after I'd
    consumed a fair quantity of electrolytes, so I'm dubious but curious
    whether more electrolytes could have done the job.

    And that raises number four: I'd like to figure out
    what Klimas's next treatment option is likely to be
    and then get my PCP to prescribe it, since it takes
    so long to get an actual appointment with Klimas. I
    figure that on Monday, I'll call her office and see if I
    can wrangle the information out of them, but I was
    also hoping that maybe someone here who has
    worked with her could tell me. So, any suggestions?

    By the way, one comment about her for people
    considering working with her: Her office is incredibly
    disorganized. I've had to request everything multiple
    times. So be persistent.

    One of my conclusions is that I should have had a
    follow-up appointment with her much sooner.
  5. ahimsa

    ahimsa Senior Member

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    Hi girlwiththedog,

    Have you tried any prescription medications to try to manage the orthostatic intolerance? I skimmed your first post but didn't see any mention (maybe I missed it) of drugs like midodrine, fludrocortisone, etc. and whether you found them helpful. Or maybe you have not yet tried them?

    Just curious - I wasn't able to read that first post slowly/carefully right now (gotta log off soon) so I hope I'm not asking too many questions!
  6. thegirlwiththedog

    thegirlwiththedog

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    The only prescription med I've tried so far is Atenolol -- 12.5 mg twice a day. I also wonder whether that could be making it worse.

    It now seems like some kind of med is in order. Part of what I'm curious about is if anyone knows what med Klimas tends to start with.
  7. ahimsa

    ahimsa Senior Member

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    That seems possible to me. I know someone who tried Atenolol (Tenormin). She had to titrate down to a very low dosage before she got to a place where it helped keep her heart rate down without making her feel worse. Since she couldn't break the tablets down small enough she actually went to some sort of liquid form and used a set amount of drops. This was years ago so I don't remember all the details.

    I never tried this drug because my biggest problem is dropping blood pressure, not high heart rate (although I get that, too). There is a warning about taking this drug if you have low blood pressure (see http://www.drugs.com/atenolol.html) but since blood pressure issues are so complicated in folks with NMH or POTS it may not always apply to every patient.

    I hope someone here is able to answer your questions! I don't know anything about what meds Klimas uses for her patients.
  8. anniekim

    anniekim Senior Member

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    Hi the girlwiththedog. In your first post on here after seeing Klimas, you said she wanted you to try Ldn again. May I ask whether you did go back on it and if so, how are you faring on it? Many thanks
  9. thegirlwiththedog

    thegirlwiththedog

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    I did go on LDN, and I didn't notice any impacts one way or another.
  10. Ocean

    Ocean Senior Member

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    Have you had any follow-ups with Klimas? Are you noticing improvement in your condition from her treatment, now that it's been a while since you went to see her? Also, how long were your initial visits with her? Thank you!

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