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Klimas cfs clinic

Discussion in 'ME/CFS Doctors' started by leaves, Mar 18, 2010.

  1. leaves

    leaves Senior Member

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    Appointment with Dr Klimas

    I like to conform to traditions so for spring break I went to Miami ... and to see dr Klimas’ brand new cfs clinic. Below my experience:

    First I saw Dr Chahine he is an internist and immunologist. He gathered all the info for Dr Klimas; discussed my previous test results, asked me which symptoms I had, and checked my vital signs. He was very friendly and thorough, made sure we went over everything. Thereafter he discussed my case with Dr Klimas and Dr Klimas drew my blood to test for pathogens and immune function. It was totally weird to have a VIP trying to stick a needle in me ☺ After that me and my mum could go to Dr Klimas office and we discussed my symptoms, treatment possibilities, and a preliminary treatment plan. Dr Klimas was wonderful, brilliant and so charming.
    Some interesting things that came up:

    xmrv
    I tested xmrv+ by VIP labs. She is a bit cautious about xmrv. My feeling is that she does believe it could be a major player, but that some of the recent studies did make her less convinced than she initially was. Also she is not sure how reliable the VIP lab test is because the testing methods are so intransparant.
    At present she does not offer xmrv+ specific treatment, but if there are more studies and evidence out there, and more information on potential treatment candidates I think she would start treating this.

    Memory problems
    She was not sure whether my xmrv infection was responsible for my cognitive problems (memory problems since very young age), she suspected neuro inflammation caused by hhv6, for which she will test me. Many cfs people can’t use parts of their brain. Funny is that my fatigue problems started much later and that despite having no memory I could still go to the university; apparently my brain found cooping mechanisms. A neuro spec scan to confirm inflammation would be too expensive therefore (and because low risk) she has prescribed low dose naltraxone, and suspects that will help.

    Endocrinology
    My hormones are very low and I have long term amenorrhea. She wants me to see an endocrinologist, and will give me a referral for a good one. She wants me to do a stimulation-inhibition test of the pituitary gland (?) She agreed that my hormonal problems are more likely to be a consequence than a cause of my poor health.

    Leaky gut
    She was very open for my suggestion that my gut problems may be a big player. She mentioned a leaky gut test, and a way of fixing it; taking antibiotics that kills everything in the gut (I have weird flora) and then build it up with probiotics. I had the feeling that we will look at this in a later stage.

    Immune system
    She will run many tests to see how my immune function works and whether I have hhv6, lyme etc and will, depending on the results, prescribe immunovir. And she discussed valcyte and valtrex too (for hhv6). She also mentioned Dr Chia’s oxymatrine. It is important to see whether my immune problems are of a autoimmune nature, or as a response to a viral infection. This can be done also by looking at cytokines.

    Sleep
    Sleep is very important, also for making hormones. I do not have restorative sleep, so she wants me to do a sleep study. Hannah could arrange for me to get a sleep study in Miami in the very same week, so that was great. I am not sure what the treatment possibilities are in this domain, but she does, so no worries there. BTW shealso mentioned ZEO a sleep measuring gadget.

    Autonomic/fight flight response
    She discussed malfunctioning of the autonomic nervous system. This seems pretty plausible given my very low pulse rate (around 45). I indeed feel like I am ‘hibernating’ all the time. This is fixable apparently. It is not clear to me whether she tested for this, or how this works. I will ask her when I have my skype meeting.


    Tilt test
    Two days after my meeting I went back to the clinic for a tilt table test. There again Dr Klimas and Hannah were amazing. I totally adore them, I felt like putting them in my suitcase and taking them home ☺. She found that I have orthostatic intolerance/ or autonomic instability. Apparently many cfs’ers have this.
    She recommended me to take a break when I exercise after 10 min (this is person specific), and lay flat, also to wear these old people support socks/stockings, to keep my blood from going in my legs and to drink electrolyte drinks for blood volume.


    Costs; about 850 for the initial meeting and about 450 for the tilt test + iv (iv is 80 so watch out with that). I probably have some copayments for the lab tests and the sleep test. We will see where that will take me....
    UPDATE: depends ofcourse on your insurance; but my lab tests where $350 copayments in total

    Plan:
    She will refer me to an endocrinologist. She will also write a note for my Dr’s to convince them that I have CFS (I asked her to put a lot of seals and stamps on the document, lol.) I will start taking my LDN and do the electrolyte drinks for blood volume. In a month all results will be in and we will have a skype conference and make a treatment plan. At that point she will probably decide on immunovir and oxymatrine and valtrex etc. Perhaps also think about tests and treatments for leaky gut. I plan to return to Miami in half a year or so.

    Ok People. Hope this helps. If you have questions; shoot! I am so excited about Dr Klimas! We are very lucky to have her.
     
    Ocean likes this.
  2. Kati

    Kati Patient in training

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    Leaves, thank you very much for all this good information. I wonder how long it took for you to get this appointment? It's great that you got in and your report it concise and easy to read. Again thank you!
     
  3. dsdmom

    dsdmom Senior Member

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    Thanks Leaves! I go next month and am so excited (and a bit nervous!) but am happy to know what to expect.
     
  4. leaves

    leaves Senior Member

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    Hey Kati
    Thank you :) Actually it was not hard to get an appointment at all, they just opened the clinic so no waiting lists yet.
    Dsdmom; you are so very welcome! Don't be nervous, you'll love it :)
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Been curious since she announced it would open in January. Been wanting to hear a report.

    Tina
     
  6. jimbob

    jimbob ME/CFS84-XMRV+

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    Leaves, I'm hoping for all of us that we won't have to have such extensive and seperate tests, that xmrv will prove to be causitive and that a one punch fix will knock out all of these nasty symptons!
     
  7. Forebearance

    Forebearance Senior Member

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    Thank you so much for sharing your experience, Leaves. It was very interesting!
    Forebearance
     
  8. leaves

    leaves Senior Member

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    Update: the sleep study was fully covered by my insurance. I have borderline sleep apnea and I have a lot of dozing (small periods of sleep at the later stage of the night). The nurse there told me to retrain my system and get out of bed after the alarm clock goes off as dozing significantly reduces quality of sleep. Hard for me because i am so tired when I wake up, but am going to try.
     
  9. Lesley

    Lesley Senior Member

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    Leaves, I would love to hear you elaborate on this a little bit. My daughter is struggling with sleep and has a terrible time waking up. I've been letting her wake up slowly, and I'm wondering if I should just make her get up.

    And thank you so much for sharing so much information about your visit. I think I am going to make an appointment.
     
  10. Cort

    Cort Phoenix Rising Founder

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    Wonderful summary. I had a hard time figuring out the price for the first two appointments from her website. Can you tell us what - aside from lab tests - it cost? If you're paying out of pocket could you give us an idea of total price if you feel comfortable with that?

    I remember she was very excited about XMRV to begin with but has always been cautious about testing and she apparently still is. I'm surprised, though, that she can't figure out what VIP Dx is doing. I assume that she's asked.

    This is the third really good report I've heard about Dr. Klimas. I have a little interview with her about the clinic coming up. Good luck with it - please keep us posted!
     
  11. serenity

    serenity Senior Member

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    Austin
    i also have borderline apnea & have been told to wake up at the same time every day. i am not going to try it, i need my sleep - as much as i can get.
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    One option I have found effective is to get up if you can, but take a nap in the afternoon. I know, I know, they all say nap will keep you from sleeping. But the key is to not let your nap go too long. I lay down with no sensory input and possibly sleep for an hour. And even if I don't feel like it, after the hour, I become active, even if it is just typing on computer. But I will admit, I feel awful right after a nap. But, usually, within thirty minutes, I have much more energy than I would have had I not rested (sometimes I don't actually fall asleep.)

    But even healthy people take naps (is even expected in some countries).

    So getting up and sleeping at regular time may be good. But if you didn't get enough sleep, you can make up for it during the day.

    tina
     
  13. leaves

    leaves Senior Member

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    Hey Lesley,

    Sure, I am not a sleep expert (although I do it a lot :)) but I'll try, this is what I understood from the nurse: There are several stages in ones sleep, especially the later stages in sleep are very important, for making hormones and for recovery. When you do a lot of dozing, that time is not filled with the important type of sleep, but low quality sleep.
    The best approach is to go to bed early at the same time everynight, put the alarm clock 9 hours later (thats how much I currently need), and get out within 10 minutes after the alarm clock rings. It will take a while but your body will get used to it. If you are very tired during the day you can try to do a nap in the afternoon.
    I have not discussed this with Dr Klimas yet, but if she gives any additional or conflicting advice I will let you know.
     
  14. leaves

    leaves Senior Member

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    Hi Cort,

    Thank you so much for your kind words :) I looked it up again and the costs for the first day (was also my first appointment) was a total of $894. I expect to not get reimbursed for this, although one can try to send in a claim to the insurance. The reason that it was so expensive is that I was a high complexity case (charge more for that) and because I was there for a very long time (4 hours or so). The blood tests they did that day where all billed to the insurance, I dont expect I have to pay for that. One the next appointment i had a tilt table test which was $369, and unlikely to be reimbursed by insurance. The saline infusion i got was $88, out of pocket costs. The sleep study I did is fully reimbursed by my insurance. Thus the total cost of this for me was $1351. But costs will be very person specific.

    About the XMRV:
    Pathogenity: not sure yet
    TESTING: yes, she contacted the VIP labs to understand their testing methods. But they were very secretive about it, did not actually know what the method was as their method was patented (by WPI?). So hard to check. She seemed more concerned about false negs than false pos though. However I talked to her later about the Japanese study results and she was pretty convinced about that.
     
  15. ukxmrv

    ukxmrv Senior Member

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    I tried the go to bed and get up with an alarm method for years and sadly, it just didn't work for me. I never settled into a routine of early nights and early starts.

    My quality sleep is roughly between 4am and 11am each day. If I don't get this particular sleep I get more and more sick with viral symptoms until I am bedbound with a very low quality of life and functioning. If I can sleep during these times I have better brain and physical functioning.

    It could be genetics, my family are night owls with only a couple of exception. Then there is cortisol, my cortisol is low in the morning and higher in the afternoon. This didn't change during the time I was trying to "reset my body-clock".

    What I suspect that the "repair" part of my sleep cycle is in the morning. I don't nap in the afternoons.
     
  16. serenity

    serenity Senior Member

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    Austin
    yep UKXMRV it's the same for me. there is no way i'm gonna try that, i get my best sleep at the time they are wanting me to get up. & i cant' nap during the afternoon, never have been able to. plus who has the time, i sleep about 12 hours. i barely get anything done before it's time to go back to bed.
     
  17. leaves

    leaves Senior Member

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    Hey Ukxmrv,
    You know best what works for you. If you do better sleeping in or long that is what you should do. The only thing to watch for is the dozing: it is better to always be allowed to sleep as long as you want without putting an alarm clock, because then you wont have the dozing (waking up to see if you can sleep some more, and then sleep a little while, and then wake up again). you want to make the undisturbed sleep as long as possible, to reach the better stages. Does that make sense?
     
  18. flybro

    flybro Senior Member

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    pluto
    snap about the alarm, symptoms and sleep times UK.

    My best sleep times seem to be anywhere betwen 4am and 2pm depending on the time of year.

    from tina:-
    it nearly always takes me an hour or more to get to sleep, even when I am absolutkey exhasuetd and had a sleeping tablet. So I have a lay down for up to a couple of hours. if after an hour I havnt slept I'l get up again.
     
  19. serenity

    serenity Senior Member

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    Austin
    yes Fybro it is the same for me, sorry Leaves that i jumped on the negative there - didn't mean to, just a reaction to the idea of waking up when i dont want to. ack! haha! ;)
    but i really do hope it works for you.
     
  20. ukxmrv

    ukxmrv Senior Member

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    Thanks Leaves, for taking the time to explain it so well to us!

    I'll watch the napping and make sure that I get my deep sleep.
     

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