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Might go to Dr. Klimas' office

Discussion in 'ME/CFS Doctors' started by madietodd, Apr 16, 2012.

  1. madietodd

    madietodd Senior Member

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    Could you post your experiences if you've been to her clinic? I'm interested because I think she does comprehensive testing, way beyond the stool and urine tests I've had done. Also, I don't have a doctor, and it might be time for a specialist.

    She's a direct flight from where I live, always a plus!

    Thanks, all.

    Madie
     
    L'engle likes this.
  2. Ocean

    Ocean Senior Member

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    Madie, I'm thinking about this in the back of my mind too if things don't pan out for me locally.

    In addition to experiences I'm curious about costs including for testing and even some possible medications, as well as what's it's like to work with her from afar. Does she do followups by phone, etc., how often are you expected to see her in person and all that. Do you have to have a local doctor who's willing to work with you. I planned to contact their office and ask all this but it wouldn't hurt to hear others' experiences too.

    My one concern with Dr. Klimas was that unlike Enlander I don't think she offers GcMAF. I don't know if there is a way to find out in advance if one is a good candidate for that, since I think that would be one factor in determining who to go see. But overall, I thought Klimas might be a good start for someone like me who's had no treatment whatsoever and no specialized testing, if I could manage the travel and the costs.

    Madie, I hope you don't mind my hitching along on your thread. I planned to start one on this soon but it seems silly to have two asking just about the same question.
     
  3. madietodd

    madietodd Senior Member

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    No, this is a perfect thread to hitch onto. This is the beginning of an idea for me, and I'd have to accumulate a bunch of money before I could go, anyway.

    I emailed the office yesterday, and got a response last night. I asked if they could take a stab at telling me what I would likely end up paying for an intake and testing, with BC/BS coverage. Hannah replied that they're just now working out a contract with BC/BS, and they'll know more in a few weeks.

    In chat yesterday, someone who goes to the clinic said the intake appointment costs just under $700, and if you want the exercise test, it costs $600. Followups can be by phone, which is great.

    I also asked when the next opening was, and Hannah said May. That was a pleasant surprise.

    Nobody sees Dr. Klimas. We're seen by Dr. Ray (Rey?).

    I remember reading a description of people who are prime candidates for GcMaf, but of course I forget where I saw it. I didn't fit the profile, so I didn't save the information. It must be here somewhere; maybe a GcMaf person will chime in. Dr. Enlander's website says the test for needing GcMaf is nagalase, but that the test is unreliable.
     
  4. lnester7

    lnester7 Seven

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    I see Dr Rey and So far so Good. (Since February)
    I got tested for all virus known to CFS (Parvo, coasakie, hh6v, EBV......so on)
    Complete immune Panel and Cytokines panel. She might request other tests depending on what you have gotten done so far.
    I got prescribed imunovir+ equillibrant. Others I know got on Famvir or other antivirals depending on virus and levels.
    I have only gone once, 2 other phone consultations. I forgot the price but phone consultations were cheap (less than 200 I think not sure).
    Follow up in 4 months for blood work and follow up. Results again by phone consultation.

    So far I went from 4 to 7 in bell scale . Getting more used to the drugs. U have to take off the weekends off of imunovir and it was brutal the first weeks. Now not so bad. So I would do it again and I am happy I did it. I paid out of pocket for consults and just charged the tests to insurance.

    7
     
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  5. madietodd

    madietodd Senior Member

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    Inester, did your insurance pay for the tests? I've heard rumors that lots of CFS tests aren't covered.

    Did you go back to Florid for the 4 months later bloodwork? Or do you have a local doctor who arranged that?

    Madie
     
  6. maryb

    maryb iherb code TAK122

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    Inester 7 interesting to see you thought the first few weeks were brutal, maybe thats where I went wrong with the Immunovir, I only took it for 5/6 days and gave up I felt that bad.... makes me wish I'd continued now.
     
  7. SOC

    SOC Senior Member

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    I have my first follow-up visit by phone today. I'll let you know how that goes.

    My initial visit was very positive. Dr Rey accepted all the labs I had previously and only ordered tests I hadn't had, which can be a money-saver compared to docs who want to do everything themselves. She also gave me scripts to have any common tests done at my home lab (or whatever lab my insurance wanted to use). The immune labs have to be done there, though.

    I'll have to ask my husband if all the immune labs were covered, but I'll get back to you on that. I'm pretty sure that the doctor appt and the exercise test was covered, we just had to pay up front and submit to the insurance company ourselves.

    The thing about getting tests covered is not to have them submitted "for CFS". HHV-6 tests, for example, should be submitted showing that the test is for "persistent hhv-6 infection". How do they know you have it before the test? I dunno. I don't understand the ins and outs of the medical paperwork, but I guess the point is that they're testing to see if you have a persistent hhv-6 infection. :confused:

    My understanding is that at the 4 month visit you have more immune tests to see how your immune system is responding to treatment, so you have to go back to Miami. Other appointments can be done over the phone, as I understand it. Also, I believe there's a law that a doctor cannot prescribe for you if s/he hasn't seen you face-to-face in the past year, so you have to go to Miami at least once a year.
     
  8. lnester7

    lnester7 Seven

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    Madie, I don't remember any test I paid for. I think insurance covered all, they included whatever else on the consultation fee. I need to go back to Miami in July 2012 for the 4 months follow up.

    Mary,


    Imunovir: first days I felt pain like hell in the knee and shoulder. It was to the point I couldn't walk on it (the right thing to do was to back off on doses) at the time I didn't know the meaning of "not tolerating" hehehhe. Now If I experience pain, I back out a doses and good to go. Then the weekends off, I felt like Flu or had the Mono also very depress and irritable. BRUTALLY felt bad, but Dr called and say well u had 7 bad days now only 2 bad days!! I said heck good point. So I did it. After the 2nd weekend off was just the blues, 3rd weekend off: better, this was the 4th and didn't notice any difference than when I am on it. So I think I passed the worse.

    This was the imunovir plan.
    1/2 a pill first 3 days. If tolerated move on else stay in dose.
    1 pill a day for 3 days. If tolerated move on else stay in dose.
    2 pill a day for 3 days. If tolerated move on else stay in dose.
    then I alternate 5 days 2 pills a day. 5 days 3 pills a day. Weekends Off. 1 month Off every 6 months.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi madie and others,

    There really isn't a cast-in-stone profile for someone who will respond well to GcMAF. High nagalase is one indicator and they used to think the genetics of the Vitamin D receptor mattered, but that is under discussion.

    Also, as to the nagalase testing, other docs found that if they eliminated some of the variables (such as taking blood, fasting in the morning instead of any old way) that the test was accurate. How accurate we don't know but my values have consistently marched down the scale (high going down) so that is one indication that it is at least ballpark right.

    Some doctors also screen for certain co-infections before giving GcMAF but others don't. So it is early in the game yet to have a good profile of a "responder."

    Best,
    Sushi
     
  10. Ocean

    Ocean Senior Member

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    Sushi, If I remember right in the past you discussed doing research and talking to others and learning that you had a good chance of being a good fit for GcmAf. Do I remember that right? If so, how were you able to draw that conclusion?

    I still think Dr. Klimas's clinic is a good place to start for those like me who've not had specialized testing or treatment. So I will inquire with them about fees. That part might be what is the big shocker for me. Aren't tests a big part of the expense? I think a lot of the tests may be ones not typically covered by insurance? And of course travel costs will be high, especially for anyone who needs a few days of rest both before and after traveling, that would make it longer trip and more hotel expense.

    For those who've seen Dr. Klimas, can you get your prescriptions through her or does your local doctor have to give refills or whatever?

    ETA: I didn't realize that patients only see Dr. Rey. Does Klimas just not see patients at all right now, or is it that she's not seeing new patients?
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ocean,

    At the time I started GcMAF, retrovirus involvement was still a potent theory. I had tested positive on a gamma retrovirus test, and that is what, at the time, made it seem I'd be a good candidate for GcMAF as it had proved successful in treating HIV.

    Sushi
     
  12. SOC

    SOC Senior Member

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    I believe that Dr Klimas is swamped with the move to the new university and so is not taking new patients at the moment. It may be a while before she will be able to.
     
  13. Ocean

    Ocean Senior Member

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    Thanks for the reply Sushi.

    For others who've seen Dr. K or any other specialist really, what can one expect as far as medicine costs for things like immune modulators and antivirals? I'd like to have some idea upfront to know if I could even afford the medicines before deciding on possibly seeing one of these doctors.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ocean,

    I don't think anyone can really answer that as it depends on what is prescribed and whether your insurance covers it. It could be very little or it could be a lot.

    The only thing that I know is not covered by insurance is GcMAF and that also varies hugely in price according to your source--it can be inexpensive or very expensive.

    Best wishes,
    Sushi
     
  15. SOC

    SOC Senior Member

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    What you need and what you can afford are two different things. It's my impression that Dr K or Dr R will work with you to do the best they can for you given your economic limitations.

    There is no way to know how much the best treatment for you is going to cost until you have all the tests and evaluations to see what problems you have. That said, most medications and high-powered supplements for ME/CFS are pretty expensive. And then there's the issue of what your insurance will pay for and how much. Generic valacyclovir paid for by insurance might be cheap (to you) compared to a less expensive supplement that insurance doesn't pay for.

    Like everything else with this illness, there are no clear or straightforward answers.
     
  16. Ocean

    Ocean Senior Member

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    Well what are some average costs assuming insurance refuses to cover? Expensive is relative, so I'd love to get some actual numbers. How much are things like Immunovir, Equilibrant, or Valcyte if insurance does not cover them? I understand I won't know in advance what treatment I'll need, but would like to try to get some idea of the cost of some of the more commonly used treatments. I think that's the best I can do without actually being seen and tested first. Thank you!
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Also, some of us in the US who find our insurance won't cover expensive medications get them from Canadian pharmacies where they are less expensive. That is another thing to check out.

    Best,
    Sushi
     
  18. lnester7

    lnester7 Seven

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    Just to update you. My symptoms are VERY reduced (except neuro Symptoms). But the malaise and fatigue are now manageable. I am very happy w progress (but tooo slow for my taste). Also, That whole new symptom pupping up every month has stopped. When I go down I recover much faster. Have not been paralyzed tired again. Have follow up coming up so I can report on test also, not just perception.

    7
     
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  19. Ocean

    Ocean Senior Member

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    That's very encouraging Inester!
     
  20. Sparrow

    Sparrow Senior Member

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    I would be interested in this as well. I think the last time I looked into it, the figure was something like $20,000 a year for Valcyte, but I'm not sure if that was name brand vs generic or what kind of dosing they were talking about. Could be out of date as well. I want some quite badly, but we just couldn't swing that much and my husband is working from home now so we've lost our drug coverage.

    Equilibrant is listed on their website as $49.99 for 90 tablets. Looks like they recommend up to 6 tablets per day. So that would be $1216.42 per year if you took it every day.

    I think I recall somebody mentioning Immunovir was around $100 a month or so. Again, though, I have no idea what kind of dose they were on or where they were getting it.

    GcMaf I read $400 a month, but again, not sure what kind of dose that is or how typical.

    I would rather go guaranteed high quality with this kind of stuff, I think, if I was going to shell out that much for it anyway. I'm torn on name brand vs. generic where it's available. I know it's not supposed to make any real difference, but I've had medications before where it really did. Something about the way the rest of the pill was put together or the supporting ingredients maybe, I don't know. But I know that the name brand and generic versions did REALLY different things for me (...Neither one did something good, mind you, but they both did something different. ;)) .
     
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