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CFS Doctors in or Near NC, USA?

Discussion in 'ME/CFS Doctors' started by Dan, Aug 16, 2010.

  1. Dan

    Dan

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    Perth Australia/NC USA
    Hi all,

    Does anyone know of any doctors treating/investigating CFS in North Carolina, maybe the Charlotte area? My radius of travel is not limited but I'd like to start near home if anyone knows of a good doctor.

    Thanks
  2. sensing progress

    sensing progress Senior Member

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    Tucson, AZ
    Yes, one of the best, Dr Lapp, is in NC! He has been treating ME/CFS patients for many years. http://www.drlapp.net/. They also do clinical studies there, including one of 2 or 3 approved sites in the US for testing Ampligen.
  3. Dan

    Dan

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    Perth Australia/NC USA
    I'm sure I've read about him in the past and didn't realize he was in this state! Been out of the country for quite a while. Thanks very much for replying
  4. Daffodil

    Daffodil Senior Member

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    isnt cheney in NC as well?
  5. powertool4

    powertool4

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    If i were in north carolina, I would go see Dr. Buttar. He primarily treats cancer but also treats other chronic illness. I recently have been corresponding with one of his patients who is now cancer free because of Dr. Buttar's treatments. He is also a very outspoken doctor against pharma and the governmental corruption FYI.

    his website is drbuttar.com
  6. BEG

    BEG Senior Member

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    Southeast US
    Cheney is in Asheville, NC.
  7. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    I'll second the Hunter Hopkins Center - Dr. Lapp did a CFIDS Webinar not too long ago. He has a great associate in the office with him and she is actually more clinical than Dr. Lapp. Her name is Dr. Laura Black and she was at the WPI this week for the Symposium. Dr. Lapp stayed at the office and don't get me wrong because he is very good, but it just seems that is the way things have evolved. Dr. Lapp is very good at the politics end of it and that is why you see them getting quite a lot of clinical trials. It's really worked out good for them and good for us as far as I'm concerned.
  8. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    Dr. Buttar's Website / NC Medical Board

    If you go to Dr. Buttar's website and encounter the video concerning the North Carolina Medical Board don't be alarmed. NCMB are a$$h#&$s as they are always after someone that is not mainstream by the book doctor. Before they got after Dr. Buttar, they were harassing Dr. Jemsek. Dr. Jemsek was in the original group of doctors that went after Lymes the way it should have been treated, also known as a LLMD. They had actually suspended Dr. Jemsek's license and just would not leave him alone. Dr. Jemsek's daughter had became ill and was just not able to take care her and fight the NCMB, so he moved his office about 15 miles into the state of SC. I personally know of a couple of people that would have either died or been severely disabled if not for him. He has now moved to DC because of his daughter's health.
    So, as I stated earlier, don't be concerned with the video. I don't know Dr. Buttar or anyone that has been there, so I can't vouch for his treatments
  9. MEG

    MEG Senior Member

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    Asheville, NC
    HUnter Hopkins and Dr Black get my vote. They are an amazing team....no better health care anywhere.
    Marian RN
  10. Stone

    Stone Senior Member

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    NC
    I live in NC as well, and would love to see Doctor Lapp, but they do not accept Medicare and their fees are way out of my range, and way above and beyond typical specialist's fees. That said, I understand that they spend hours evaluating you very thoroughly, and I've never heard a patient complain that they didn't get appropriate value for their money. If you do find a doc who accepts Medicare, please PM me and let me know. It would be wonderful! BTW Dan, what city are you in? If you like, PM me and let me know. We just might be neighbors. :)
  11. muffin

    muffin Senior Member

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    USA!
    As August has pointed out - The North Carolina Medical Establishment is a PROBLEM

    There is a very major problem in North Carollina with anything at all to do with CFIDS. Doctors will NOT treat the sick here. They will not even write down in their notes that you have CFIDS, but they will write that you have a "fatiguing illness". The Medical establishment in NC is very powerful and has indeeed run out several doctors that treated CFIDS and FM. Dr. Cheney in Asheville is one of the only doctors I know about here in WNC that treats CFIDS. His charges are very high but he is using those high payments to help fund his own research. So I do understand. Of course, I am a huge Cheney supporter so whatever he does is great by me. Aside from Dr. Cheney, I know of no other doctors here that treat CFIDS. Those that did treat CFIDS were literally run out of NC. Amazing!

    For whatever reason, there is a massive NC medical board attack against CFIDS. This is super correct. I don't know why but it is the case. Remember, a very sick child with CFIDS, Ryan Baldwin, lived in Buncombe County (Asheville, NC) and they took him from his loving and supportive parents and grandparents and put him into a wretched foster care situation - no health care or education for him at all. The Baldwins need money to pay off huge legal bills to get their son back. That is also on the Causes site. Lisa Baldwin is super smart and a very, very loving Mom. If you can, donate to them since this was so unethical and illegal. Basically, Buncombe county Department of Social Services saw that Ryan was getting SSA money and they grabbed him to get that money. This has been written up about other states and the huge amount of money that those states and counties make taking the non-sick/non-abused kids who get SSA money and put them into horrid foster care - just to get that money. Sorry, this is an aside that really got me and many hundreds of other people who knew about this story and did try to help. But Lisa Baldwin and her family need help in paying those legal bills off. IT ALL was so insane.

    So, what August has said about the Medical Board in NC is sadly dead-on. This MUST change. There are many people here in WNC that are sick but do NOT have a diagnosis or any sort of treatment. I have bumped into people who have all the symptoms of CFIDS but were getting no real medical care. Beyond criminal, wouldn't you all say?

    So much must change and change soon. Enough is more than enough.

    Thanks August for pointing out the dirty games that the North Carolina Medical establishment is doing to the CFIDS sick and the doctors who try to treat them.
    lifeonerth likes this.
  12. Misfit Toy

    Misfit Toy Senior Member

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    As everyone mentioned, there are many CFS docs in NC. You are lucky to live there...not so lucky to have CFS. Let us know who you will see.
  13. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    Glad to do it and it's like I said. I don't know Dr. Buttar, but I do know the NCMB and what they have done to ruin very good doctors. It's funny how these doctors go to different states and don't have any problems and in most cases become extraordinarily successful.
    I believe there used to be a orthopedic surgeon or neurosurgeon in Asheville named Dr. Rosen, that was trained in a pretty specialized cervical (neck) procedure. He had performed this procedure on someone and coincedently this person had either been diagnosed with fibromyalgia or had very obvious symptoms of fibro, but this had nothing to do with the surgery. However, it became very obvious that the surgery had a tremendous impact on this persons fibro condition. Dr. Rosen wanted to look into this further and found that under very specific conditions this surgery had "cured" fibro in other patients. The truth was that they didn't have fibro to start with, but instead there was an upper cervical condition that caused at least part of their problems. He performed a couple more of these procedures with the same results. Then there was this patient that I believe came up from Florida and needless to say the procedure did not work for her and she was a pretty prominent socialite in Florida. She decides to sue him and report him to the NCMB. They claimed that he was advertising that his surgery cured Fibro and stripped him of his surgical license for quite a few years. Dr. Rosen had evidence that the woman lied about part of her condition and that she was an alchoholic, but that had no effect on the NCMB decision. They ruined this doctors life because of a drunken socialite from Florida. Sorry for the long post, but felt like it needed to be said!!
  14. Stone

    Stone Senior Member

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    NC
    Yes, as for me, I'm ever so interested in finding a doctor who has even a basic understanding of CFS. I can work with that if the doctor is open minded and not threatened by a patient who is informed about their disease. It's odd, I encounter physicians whom I wouldn't normally think of as needing to know a ton about CFS and yet are surprisingly knowledgeable about it. Then I encounter internists, neurologists, rheumatologists and endocrinologists who are completely clueless about CFS.

    Just two days ago I saw a dermatology PA who was very well informed about CFS to my utter shock, so just for entertainment I thought I'd mention the new retroviral causation 'theory'. She grasped it immediately! I didn't have to go over the difference between a virus and a retrovirus, and she actually said, "Wow, so that makes three! (known pathogenic exogenous human retroviruses in general) It certainly does fit, doesn't it? Wow, that's amazing." Then when I added, "Yeah, and get this, they're finding it in something like 3% to 7% of the healthy population, maybe more." The look on her face indicated that she completely understood the implications of that. I was so surprised that she understood all this without additional explanation that I had to consciously close my mouth because my jaw had dropped.

    It's such a hit and miss thing. My gyn doc is relatively very well informed about CFS but in sharp contrast, my well-known and highly respected internal medicine PCP is almost completely in the dark. When I gave my new internal medicine doctor a copy of the Canadian CFS/ME document (which I printed out in color, put into sheet protectors and bound nicely into a durable folder with good-looking labels) he actually asked me what I wanted him to use it for. I had to explain that since this disease is so grossly underfunded that there is consequently almost no practical information available for physicians to refer to concerning the diagnosis and management of this disease, I thought it would be a good idea to get something current and useful into his hands. He said, "Oh yes, I see. This will be very helpful, thank you very much. I'll put it to good use."

    I just never know from one physician to the next what the starting point is in terms of their level of understanding of CFS. If the physician is open minded and not threatened by a patient's attempts to respectfully supply them with information they can use to help, I can work with that. But if there's an ego issue on the physician's part, it doesn't work out so well as you might imagine. I recently had to change primary physicians for this very reason. She was quite upset with me during an office visit when I respectfully corrected a couple of her statements such as, "There's no pain what so ever with chronic fatigue", "It's caused by Epstein Barr Virus" and "There is nothing biologically wrong in CFS; it's a wastebasket diagnosis". When I did give her, again in a very respectful and polite fashion, the correct information on these issues, she responded very angrily with, "I don't like it when my patients know more about their ilness than I do!". Even after confirming what I had just said on her computer database right there in the exam room, she was still livid, all the more so actually!

    At least she was honest enough to admit that she didn't like her patients being more informed than she. After that, on every subsequent visit she wrote "depression" as the reason for the visit, no matter what problem I was seeking help for. I eventually had to change PCP's. At least now my new PCP is not threatened when I supply him with information necessary to help me or expand his understanding of my illness, since he sincerely does wish to help, even if I have to help him do so. Even so, I can't wait until this disease falls clearly under the infectious disease umbrella, and the ID docs have some reasonable protocols to follow with us. What a day that will be!
    HalcyonsF8 and lifeonerth like this.
  15. HalcyonsF8

    HalcyonsF8

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    Desperately seeking PCP Greensboro/Triad area NC knowledgeable in ME/CFS that accepts medicare.
  16. CallieAndToby

    CallieAndToby Senior Member

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    florida
    Dr. Black also works at the hunter hopkins center but takes a more holistic approach. I only spoke with her once but really liked her. But you have to really research their treatment approaches, because I went up to NC and was not happy with the approach. They just try to comfort the patient and don't attempt anything experimental, i.e. antivirals and immunomodulators. I'm not bashing, again I love them and think they truly care about their patients, but this approach did not help me. I think it comes down to what you've tried, what you want to try, and what you expect. Lapp does have a good web-site so read up.

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