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Any reason to see Klimas/Rey over Peterson?

Discussion in 'ME/CFS Doctors' started by November Girl, Oct 21, 2012.

  1. November Girl

    November Girl Senior Member

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    I plan to see an ME specialist for the first time in early Feb of next year. My original plan was to see Dr. Rey or Klimas. With all the upheaval in that office right now, I can't even make an appointment for 2013. I know their clinical backgrounds and clinical approach vary, but not much more than that. My symptoms pretty much cover the gamut for ME/CFS and my insurance is Medicare. Either way, I expect to pay a lot out of pocket.

    Any input on this would be welcome.
  2. lnester7

    lnester7 Seven

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    To be honest I applied like in 5 different specialist. Only Dr Rey and Elander were taking new patients (not too long waiting list). Dr Peterson asked me for my records and depending on your application he might see you or not. So I have been established w Dr Rey for 1 year and I am still waiting to hear from Dr Peterson. I am happy at Klimas group. But I think is a matter of how soon do you need the help.
  3. MishMash

    MishMash *****

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    Dr. Klimas is the master of immunological testing. She used to be an HIV/AIDS researcher. So she will nail down exactly what is disrupting your immune system and give your hard copies of the tests. On the other hand, like any other doctor, she doesn't have any definitive cures. And I didn't get much benefit from the supplements she prescribed. In fact I stopped taking them after several months. In saying that, I'm pretty sure if any doc had the solution to this illness we'd already know about without seeing Peterson or Klimas, right?

    Dr. Klimas's value in this whole field, at the end of the day, will not be in seeing individual patients; but in higher-order theorizing and trials as to the origins of CFS. She is more of a big-picture scientist and a researcher than a hand-holder and primary care time doctor. I know she is intensely interested in Rituximab and she is personally in touch with the Norwegian researchers. She is constantly going to conferences and beating the bushes for treatments and biomarkers for our illness. I haven't been to see Peterson, but I picked Klimas because I wanted the solid immunological testing I might use should I face a disability hearing situation.
  4. Rooney

    Rooney

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    Dr. P. takes Medicare. I'd call for an application and send in your basic labs. I got in on a cancellation. I wouldn't be put off by the application.
  5. November Girl

    November Girl Senior Member

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    My basic labs are pretty basic! the majority of my testing was done years ago, and unfortunately those records are lost.
  6. August59

    August59 Daughters High School Graduation

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    I haven't seen either one, but I do not think you would be making a mistake with either one. It may better serve you by just trying to get in with both, call and talk to the insurance coordinator and see if she can give an idea of what your out of pocket will be. Find out about accomodations because I'm pretty sure they both are about 3 days initially (MishMash probably has input on Dr. Klimas).

    How far from airport will you be and the cost of airfare to each clinic. Either one could probably be turned into a mini-vacation (I said that because I haven't been anywhere in 5 years!!!).

    One good question is how often do they require you to return if you want to remain under their care.

    Sit down and make you a list of some questions and I wouldn't make it to many, just the very important ones. Call each office get as much information as you can. Then answer some of your own questions about transportation, lodging, special foods you may need, if your not traveling by yourself, does your companion have any special needs. Think about the extended stay for a little R&R.

    Once you get this information out in front of you the answer might become crystal clear.

    If your trying to judge it on just based on their merits I don't believe their is enough difference to do that. I personally would let them cut off one of my fingers to let me go see either one.

    Sorry, it got a little longer than i expected and I was certainly not intending to make it harder for you to make a decision.

    Please let us know what you decide and when the time comes and you don't mind please update us on how your appointments go. I think everyone on the forums enjoys hearing about another members trip to the top tier of doctors for ME/CFS.

    Good Luck!!
  7. November Girl

    November Girl Senior Member

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    August, Thank you for some excellent points. An extended stay does sound nice! I will call Dr. Peterson's office. I wonder if asking for an insurance coordinator would help to get past the extremely unhelpful answering service - definitely worth a try. Being on Medicare, I do expect a lot of out-of-pocket. Too bad I don't have even a small fraction of the money I spent on docs years ago, none of whom really helped, and some of whom were downright quacks.

    Inester, I'm very anxious to do this, and hope to see some improvement, but sadly, a few months won't make that much difference after 36 years.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    as for klimas being the immune specialist for which i agree, dan peterson has teamed up with the aussie bond uni guys who are also specialising in diagnosing cfs through nk bright cell fucntion??
    November Girl likes this.
  9. Hope123

    Hope123 Senior Member

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    You have to check with their office but Klimas does take Medicare; however, as I understand it, the waiting list is longer for Medicare than for other types of insurance. I pay for my care without insurance so check with them personally to find out the situation.

    Other thing about Klimas is she will do some follow-ups via Skype so that might be helpful for those who aren't able to see her in-person every time; however, Florida laws require patients to see their docs at least once a year. And that also makes sense from a medical perspective; I would not trust a provider who never sees you in person but would prescribe anyway.
    November Girl likes this.
  10. Anne LiConti

    Anne LiConti Waiting for Rituxan

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    Ive been in the ME/CFS doctor club since 1994. For personal reasons, I just recently scratched Peterson off of my referral list because he knew about Rituxan for years and never looked into it, is busy pushing Ampligen which still isnt approved, and is hooked on the anti virals which do nothing. You can hear him say he knew about Rituxan on one of those CFS Alert videos, I think its video #26.

    Klimas if she does a Rituxan trial otherwise no. From what I understand, she isnt personable. When I called her office when I first moved to Florida, told them I was Dr. Susan Levine's patient, they still gave me a hard time and couldn't tell me whether or not they would take me as a patient. So I didnt pursue any further.

    Dr. Enlander or Dr. Susan Levine in NYC would be my first choice if I were first going to a CFS doctor at this time. I went to Dr. Susan Levine when I lived in NYC and after I moved to Florida I made a few trips there, she didnt charge me because she knew I was going through divorce and had no money or insurance.

    Dr. Lapp in NC is good, I personally know a few people who have gone to him for years. He also has a few other doctors in his office that are good from what my friend told me who just went there for her yearly appt.

    Dr. Cheney- if you are Rockefeller and have the $6000 up front to pay him, he doesnt take insurance. A friend of mine called his office about a year ago and she had to go on a waiting list for a year just to get an appt. I dont think they ever called her.

    I see one of the low key doctors in Orlando since 1996, he kept me on Dr. Levine's protocol, the later added immune globulin and pain meds as I needed them, etc....
    There is also a GP about 3 miles from me that knows the illness, people come to see him all the way from Tallahassee (6 hours away). He took an interest in the illness when his wife got it. I see him as well because I have other health issues and he is more convienient to get to than my Orlando doctor who I see every 3 months.
    ggingues likes this.
  11. nanonug

    nanonug Senior Member

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    It is my opinion that in most cases ME/CFS is simply undiagnosed Mast Cell Activation Syndrome. This post enumerates some of the symptoms associated with mast cell disorders. If you have some of them there is a decent chance your problem is MCAS. As such, and in my opinion, it would be better to see an immunologist willing to do the tests for MCAS.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Could be. Nanonug, what do you make of Dr. Byron Hyde? I just saw him today give a presentation, gave me a lot to digest!

    GG

    PS The presentation was videotaped and will be posted on the MA CFIDS website in the future.
  13. nanonug

    nanonug Senior Member

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    I am afraid I don't have much to say as I am not familiar with him.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Well, you might want to research him.

    GG
  15. Anne LiConti

    Anne LiConti Waiting for Rituxan

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    My friend went to see that presentation by Dr. Byron Hyde. She said it will be on the internet soon. She said it was very good, she is a long term patient too. I look forward to seeing the presentation.
  16. Anne LiConti

    Anne LiConti Waiting for Rituxan

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    I actually do see an immunologist for IGG subclass insufficiency, I just may have to look into this!
  17. Gamboa

    Gamboa Senior Member

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    Hi all,

    I am actually a patient of Dr. Hydes so can offer some insight on him. I am 48 yrs old, female and suffered from ME/CFS for at least 10 years, maybe more. It is hard to say exactly due to slow onset and fluctuating symptoms and severity. I started seeing Dr. Hyde March 2012 and have had many long visits since. I have another thread about the first few visits and will be writing a new update, hopefully later today.

    The bottom line is that he has sent me for many, many tests, done by many specialists to rule out all sorts of diseases including a lot of very obscure and rare ones. So far, and we are almost at the end, he has not discovered any other diseases and believes I truly have ME/CFS and have not been mis-diagnosed. This is a bit unfortunate since it leaves with me with no treatment options and a diagnosis with a disease that gets no respect.

    My visits with Dr Hyde, on the whole, have been good and I am glad that I am seeing him but there are a few drawbacks. The three areas that I would have liked more exploration in, infectious disease, immunology and endocrinology, have only been skimmed over. I think the reason for this is that he has no friends in those fields.I used to work in Microbiology at the Ottawa Hospital for many years and knew all the Ottawa Inf. Dis and Microbiology doctors .I also met all the new ones coming through since they had to do training with us in the lab. None of them believed in ME/CFS and Dr. Hyde was considered a nut case and not respected. We were always having to cancel lots of tests that he was requesting. As a result, he has no one here to refer me to. He also knows that they know nothing about the illness so it would be pointless sending me to them. I noticed the doctors that he has referred me to such as a neurologist and a hematologist were both the same age as Dr. Hyde and friends of his.

    He also doesn't prescribe any medications and doesn't appear to know much about natural supplements and things like going gluten-free. Also, here in Canada, I don't think we can get things like ampligen and other anti-virals.

    I am now considering going to the states to see someone, possibly Dr.Klimas.

    Gamboa
    Kati, merylg and ggingues like this.
  18. acer2000

    acer2000 Senior Member

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    Well I can't comment on Dr. Klimas, but I have seen Dr. Peterson for a few years. Here's some things to consider:

    His office is located in Incline Village, NV which can be easy or hard to get to depending on where you live.

    Dr. Peterson + staff have tons of experience with ME/CFS and is a very caring doctor. His initial workup is very thorough and includes infectious disease, immune markers, lumbar puncture, MRI, cardiac, and treadmill tests to "quantify" your fatigue. I doubt I would have been able to get another doctor to do this kind of workup on me, or if I did I'm not sure they'd know what to do with it. Dr. P's experience is huge here and its a big value to seeing him.

    My insurance paid for most of the workup. I would think it would be expensive if you didn't have insurance. Some of the immune markers he tracks are still considered "experimental", so insurance coverage would be hit or miss on those. He also takes medicare.

    With my case, he found several abnormalities but no "smoking gun". He has tried me on several empirical therapies which have not been successful for me. He appears very familiar with various anti-virals, but since I never have any quantifiable viral activity I haven't been put on them. I have not tried Ampligen, but I'd imagine his patients have a good shot to qualify for the open label trial as his office is a site.

    He's pretty risk averse when it comes to treatments so that's good for safety's sake. I'd say he has a healthy skepticism of the "drug/bug of the month" crowd. If you want to jump on the latest thing before there is much in the way of evidence, it might be a frustrating experience. He has been around a while and knows the ins and out of dealing with disability companies with respect to ME/CFS. His patients are well characterized and he is connected with ME/CFS research community (what exists of it) so his group is given the opportunity to participate in research projects going on in the CFS field. (ie his patients in the XMRV studies, etc..)

    The only frustrating aspect of my experience with him is that sometimes communication and follow up is harder than it should be. He is essentially a small town/one doctor operation. He travels a lot to meetings. I'd imagine if you are a local CFS patient, it would be pretty smooth as you could just have regular appointments with him and follow up that way. But at a distance, communication can be inconsistent and getting your lab results can involve delay. It often takes multiple contact attempts to get a response. This has gotten better lately as they have hired a research assistant who is very organized. To be honest, he and his staff have always come through for me when I have needed them so I can't complain much, but in this area his office could use some improvement.

    The thing to understand is that even though hes probably one of the best in the field of ME/CFS and hes a very caring doctor, nobody knows the cause of ME/CFS. Even with all of the testing he does, he doesn't always know what it means (for example, I have cytokines in a certain pattern and all he can tell me is that a subset of his patients also have this, but he doesn't know why). Its still pretty trial and error to see if you will respond to any treatment he has.

    I'd suggest that if you go to see him you should submit to his whole workup. He may find some treatable illness and you may get better. If he diagnoses you with ME/CFS, then I think its worth leveraging his experience trying some of the more empirical treatments he has.
    vli and jimells like this.
  19. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    acer2000 does he not have email? My Dr has that so saves a lot of trouble of calling and remembering the answer etc..

    GG
  20. acer2000

    acer2000 Senior Member

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    How specific and certain does Klimas get with the immunological testing? Is she able to narrow down suspected pathogens or disorders based on cytokine patterns? Or is it more general? I've always wondered about this.
    ggingues likes this.

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