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My appointment with Dr. Klimas was wonderful

Discussion in 'ME/CFS Doctors' started by me2, Sep 18, 2010.

  1. me2

    me2

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    My 17 year old daughter and I had appointments on the same day with Dr. Klimas. We were both very excited to see such a knowledgeable doctor. We were not disappointed.

    Her nurse practitioner is gentle, kind and very insightful. She took my initial history while Dr. Klimas took my daughter's. It was clear from the questions I was asked that the many pages of paperwork i sent in had, in fact, been read. Then we both met with Dr. Klimas, who told us how the various symptoms we all have are inter-related. You can look at her numerous videos all over the internet to get her take on it. (So much better than my trying to explain it.) She ordered a great deal of blood work and will be speaking with us the first week in October about the results.

    Regarding XMRV and the Alter paper's variants, she was cautious but optimistic, saying "It's a very exciting time." She also feels that the fresher a blood sample is the more accurate the viral testing will be---so much so, that she doesn't feel it is best to test for it at the present time. I believe she is working now on coming up with a more standardized retro virus test at the University of Miami. She also indicated the she hopes to start research trials of various antivirals and combinations of antiviral meds in the near future.


    My initial observations are that this is a place that accords CFS sufferers a large measure of dignity and compassion. The outer office has 3 massage recliners. The first person you will meet is Hannah. Hannah, who wears many hats at the clinic, is incredibly easy to talk with. She is like the hub of the wheel that keeps everything spinning properly. I don't think there is a job title for the many responsibilities she has, but I can say from experience that she is unlike any other front office individual with whom I have interacted in my long medical history -- i.e., she is helpful, pleasant and thoughtful.

    And then, there is Dr. Klimas. Have you ever noticed that your physician enters the office from a back door? Well, not long after we arrived at the CFS clinic, the door opened into the small waiting area and in walked Dr. Klimas. She is truly unassuming and I do not know how she manages to keep vanity at bay. I don't want to sound like a groupie, but this woman has done so much for the cfs community with her advocacy and research and is world-renown for her discoveries--and yet, she came out to the front office area and sat down next to me with her laptop to confer on which type of CPAP mask I would prefer. Look, MDs, in general, just don't give a hang about my preferences. But Dr. K cares.

    My daughter was sent home with a device that monitors her sleep and I was given an IV of saline. I immediately felt a heaviness lift off my chest. Although she feels my daughter and I are in different subsets, we both have hypovolemia. She wants us to drink 32 ounces of Gatorade or its equivalent each day.

    It was an amazing visit and I am definitely looking forward to the results of our lab work.
     
  2. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    Thank - you so much for your report on your visit to Dr. Klimas.

    Please keep us updated on your results and her suggestions.

    glen
     
  3. zoe.a.m.

    zoe.a.m. Senior Member

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    Hi me2,
    So glad you had such a good experience and I really appreciate all of the details. At this point I'm happy to live vicariously! I also like hearing that Nancy is "truly unassuming," it's what I imagine, but great to hear confirmed. I don't know how she does what she does and all that she does. I'm so happy for you and your daughter and I hope you keep us updated!
     
  4. Kati

    Kati Patient in training

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    Me2, thanks for sharing your experience. I saw Dr Klimas at the end of June and I refer to that visit as "my spa" day!!! Hannah and Nancy were wonderful, now if we only could clone them.

    I am a bit disappointed that her XMRV test is not ready- she froze some blood from me and said it would be ready by mid- September...
    Oh well...
     
  5. floydguy

    floydguy Senior Member

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    Thank you for sharing. Please keep us updated as you learn more. Just curious how far how out she is scheduling?
     
  6. calzy

    calzy Senior Member

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    I LOVE her..she is like your very own bff.
     
  7. JT1024

    JT1024 Senior Member

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    Massachusetts
    Thanks for telling us about your visit! She and Dr. Peterson definitely need to be cloned! I wish I could go to either on of them.

    Perhaps someday soon, I will.
     
  8. sensing progress

    sensing progress Senior Member

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    Thanks very much for the report, me2! I am seeing Klimas in just over a week myself so very happy to read of your positive experience.

    One question: at what point during your appointment was blood drawn? I hope it's not at the beginning as I'm worried it will totally knock me out and I won't be able to process anything that's said to me.

    Cheers!
     
  9. BEG

    BEG Senior Member

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    Does anyone know if she takes medicare?
     
  10. calzy

    calzy Senior Member

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    Naples Florida
    Only at her practice at the University of Miami. However she has a 4 year waiting list. Her partner Dr. Rhe at the University, has openings, and I hear she is wonderful. Dr. Klimas trained her.

    Remember, she has 2 pratices, one private (no medicare) and at the University.
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    She sounds wonderful, if I cannot get help more locally,, perhaps I will travel in the future!
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Perhaps you should just mention this to them? Most of my Dr appts, this happens at the end.
     
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm. perhaps the only time I would think cloning is acceptable, that is as long as they agree to it! LOL
     
  14. me2

    me2

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    Latest Update on Our Visit

    I appreciate all of the responses to my post and would like to echo what others have said - Dr. Klimas does have two practices. The first practice is at the University of Miami. The waiting list is only long if one must see Dr. Klimas. I have heard good things about Dr. Rey. Here is a link to the contact information for the University of Miami practice:

    http://medicine.med.miami.edu/x636.xml (If anyone has a different telephone number to contact this office, please correct me.)


    Her private clinic, The Chronic Fatigue Clinic, took only a month from referral to appointment. The University will file insurance for you, but the Clinic will not. However, the Clinic will give you the paperwork to file with your insurance carrier, yourself. I have not had the energy to even pursue reimbursement from my insurer yet.

    That being said, an appointment with Dr. Klimas is worth selling a kidney if that is what it takes to see her. She has calmly dealt with my inefficiency in listening to my voicemail, and simply called the backup number I provided. She made numerous calls but never complained about it.

    She was concerned about some early lab results for my daughter. When I returned her call, she carefully discussed the results with me, took down the phone number of our pharmacy and called in prescriptions herself, immediately. I don't believe I have ever had a physician call me directly because they were concerned or take such prompt action. Then, on top of that, Dr. Klimas and Hannah helped us get authorization with Express Scripts for payment of the unusually large amount of antibiotics we needed.

    The lab results:

    She found a raging Lyme infection, previously undetected by standard testing, in my daughter. She also found evidence of my being exposed at some point to Lyme. I have been tested many, many times for Lyme Disease with negative results each time. Dr. Klimas ran one battery of tests and found it immediately. I realize it is very hard to find evidence of this particular disease, but the fact is, she did.

    My daughter is now taking a combination of antibiotics: 500 mg of Amoxicillin to be taken 4 times a day and 250 mg of Azithromycin twice a day. From what I have now read about Lyme, it could have killed my daughter, but the quick diagnosis makes treatment success highly probable. I am also taking a combination of antibiotics, but due to my penicillin allergy, I am taking 100 mg of Doxycycline twice a day along with the 250 mg of Azithromycin twice a day.

    In addition, she discovered an extreme Vitamin D and mild B12 deficiency in my daughter. My labs showed mild D and B12 deficiencies and Coxsackie virus. The latter finding surprised me since no one has found this virus previously. But then again, this is the "Klimas difference." :Retro smile:

    Some of the lab results have not been received yet, so I am excited to find out Dr. Klimas' further recommendations at our telephone appointment in October. I can already see a little more color in my daughter's face.
     
  15. susan

    susan Senior Member

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    Do you know why you have to drink the Gatorade...it is salty is it not? Would it be to increase your BP.
     
  16. me2

    me2

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    Before our appointment, my daughter and I were asked to record our first morning temperature and our BP before getting out of bed and BP again in five or ten minutes. Dr. Klimas felt we both have low blood volume and orthostatic intolerance/POTS. Dr. Klimas also said that all of the systems of the body that are affected by CFS tend to create a loop and each malfunction tends to reinforce the others. So she hopes to break the cycle by treating the OI.

    As an aside, she sent a family member to the Disautonomias and Mitral Valve Prolapse Center in Birmingham, Alabama. Back in the early '70s, Dr. Phillip Watkins at this Center was the first doctor to take my strange symptoms seriously. They advise the Gatoraid use, too. Actually, they prefer sugar-free sports drinks, and Dr. Klimas said any sports drink was fine (not just Gatoraid).
     
  17. me2

    me2

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    My daughter just reminded me that we didn't take temperature readings at all, just BP and our pulse. Sorry for the confusion.
     
  18. paddygirl

    paddygirl Senior Member

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    For those who can't travel or afford to travel to Dr Klimas, there is a brilliant set of 'expert' videos from her and others on the cfsknowledgecenter site. Just click on the 'expert' tab. Some of those were always free, now all are. If you can afford it a donation is welcome but not required. Lots and lots of good information in there.

    Paddy
     

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