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In need of a new doctor, I live outside of Philadelphia

Discussion in 'ME/CFS Doctors' started by Misfit Toy, Feb 18, 2010.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I have been seeing a doctor for 10 years now. At the Woodlands Healing Research Center. I am a complicated case with severe allergies and bascially a universal reactor. In the past 2 years, my health really took a turn due to perimenopause and adrenal exhaustion. He has tried BHRT, ACE for the adrenals and he basically puts me on stuff that may or may not work. The problem is, I am spending a fortune on supplements that I may have a reaction to or that I can't tolerate because my body turns it into something else. I have to recommend the testing, I have to bring in articles, I am the one who makes suggestions. He treats the symptoms. That's it. Like a bandaid.

    I can't reach him, he is quick or writes an email that is a sentence. My friend in New York wants me to see a Dr. Morrison. His specialty is not CFS. It's a little all over the place. I am scared on what to do. He is $750 out of pocket, first visit. I am in the dark here, as many of us are. I don't know what to do. All I know is that I am getting sicker and sicker and it's not getting better. I am 39 and progressively getting worse. I am sick of trying to figure it out myself and trying treatments because someone recommends them.

    It's all a mess. Any thoughts?
  2. aquariusgirl

    aquariusgirl Senior Member

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    Well it sounds like you gave yr current doctor a good long try....so definately time for a change.
    I've never heard of Morrison and I would want to know what his treatment protocol is and what his track record is with CFIDS patients before I forked over $750 to begin with.
    I think this is the dilemma we all run up against because I don't think there are (any?) many good CFS docs out there.
    In the end, I think you look at their treatment protocol and decide if that's the way you want to go.
    Corinne has a thread where she discusses in detail what kind of txt she is getting from Dan Peterson .. down to the labs he orders.
    Long waiting list I think and one of his things is IV antivirals. Heavy duty antivirals like Vistide. Ross has talked about his treatment.
    Then there's Paul Cheney in Asheville, N. Carolina. I was just watching one of his videos about diastolic dysfunction.. and the man is smart and knows this illness. I'm kind of put off by the cost, although I'm not clear on how much would be out of pocket after insurance.
    Plus, I can get Nexavir, mag/taurine shots, B12 shots, from my local doc.
    I am intrigued by his use of arteminisn though and would like to do it.. under the supervision of a knowledgeable doc... which unfortunately I don't have.
    There's Dr Klinghardt in Washington state.. more alt med.
    Then there's karen Vrchota in Winona, MN, Dale Guyer in Indianapolis, Derek Enlander and Susan Levine in NY.
    If you google their names you may come up with testimonials both here and on the prohealth message board.
    I think there are patients of all these docs on the boards.
    Personally, I traveled to see Dr Joe Brewer in Kansas CIty, MO. Loved him. Nice man. Very open minded...didn't want to give me valcyte cos I hadn't had a family .. and beyond some supplements didn't seem to have much else to offer at that time. that was a few years ago.
    I saw Dr Charles Lapp in Charlotte, N.Carolina. Boy, that was a waste of money.....and before anyone jumps on me.. yes, he's a nice, caring doctor, but "he couldn't help me."
    Now I'm stuck managing my own care. I have made some progress doing methylation support. Got me out of the depths of this illness..but it's slow going. Now adding amino acid IVs....and looking at energy medicine to kill off bugs.
    Haven't found any doctor that seems to beckon, although mike dessin's doc Admin edit - privacy issues sounds promising, but he's not taking new patients apparently.
    Sorry.. long-winded...but may be of some help.
    BTW< there's a patient with the name Running Antelope over at the prohealth forum fibro/CFS message board who is a Cheney patient and has talked about his progress.
    Good Luck. Keep us posted!
  3. aquariusgirl

    aquariusgirl Senior Member

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    what about nancy KLimas in Miami. She is a big in CFS research (i think) and is /or has recently opened a new clinic.

    I'm sure others will chip in.. but it might help if you give a sketch of your major complaints and yr diagnoses and what has or hasn't worked for u so far.
  4. Misfit Toy

    Misfit Toy Senior Member

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    Dr. Cheney is super expensive. I have had friends go to him. This whole thing is so confusing. I am so sick I can't even make up my mind and think clearly. I need help bad. I am sick of this illness. The worst is when you are too sick to even take care of yourself or cognitively make headway. I agree with you, I need to ask this doctor some questions. $750 is a lot of money and I want to know what exactly it is that he does that is so different. My biggest problem along with just everything is that after 21 years, I am giving up hope. No one really knows what to do. There are so many complexities to my case that it is really hard.
  5. aquariusgirl

    aquariusgirl Senior Member

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    When you say you'r a universal reactor, do you mean you have MCS?
    Grace Ziem has a protocol for MCS, if so.
    alos, can i ask how are those friends doing with cheney? Any success stories?
  6. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Spitfire,

    Trying to find a good doc for this illness is so exhausting!! Just a comment about Dr. Cheney. A good friend of mine who lives in my town sees Dr. Cheney and has made some extremely good progress (especially in the last few months) in feeling better. Altho she has not been able to return to work yet. He is definitely beyond expensive so he is out of the question for most of us. However, there is a good bit of free information posted about his protocols on his web site, some on this forum, and some posted on the Dallas Fort Worth support group site by Carol Sieverling. There are also some inexpensive DVD's that discuss his theories. My local primary care doc has been pretty good about following some of his protocols altho stopping short of recommending the cell signalling factors which I understand can be quite tricky.

    Good luck with whatever you decide to do and please keep us informed on how you are. The support on this list is incredible. You are not alone.

    Take care,

    Hysterical
  7. anne

    anne Guest

    Dr. Levine in NYC is a terrific CFS doctor.
  8. Misfit Toy

    Misfit Toy Senior Member

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    I think the problem with Dr. Levine though is she too doesn't see the patient for that long. I need someone to really go over my tests, my 21 years of info. Dr. Levine doesn't do that. She will give you meds you want. I want more of a western medicine doc along with alternative treatments. From what I hear, Cheney is $7,000 which is just ridiculous! Many who are sick can't afford even $100. I realize I will have to pay out some money, but don't make me broke only to get me a little better! It's sad. I have some friends that say they would pay whatever they had to to get well, but I don't believe in getting well with this illness, I would take just a 30% improvement. I will look into some of his protocol though. So, thank you!
  9. Sue C

    Sue C Sue C

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    finding a doctor

    Hi there, Am very moved by your story. How exhausting, it is going through many years of trying to get answers and a treatment plan to help you gain balance and stability.
    I became ill with a gradual onset in early 1990's, had a great nursing career, went on and completed a second science degree, all the while feeling my battery slowly
    losing its go. So when I crashed, it was down for the count. At that time, I was married a few years, had bought a house which counted on both incomes. When my work
    insurance paid for a handful of specialists and tests, nothing tangible was found. That led me to a nutritionist, acupuncture with chinese herbs for a good two years while
    I would get treatment and then return to the major stressors of a job and home environment, with renovation of our old house, chemicals, paints, etc. One day I found a book about CFS,
    which I had not heard of. Both Dr. Paul Cheney and Dr.C. Lappe had a cfs clinic then in Charlotte, NC It was the luck of the draw that when I called for an appt. it was with Dr Cheney.
    At this point, I could no longer work, and had to file for disability. (had been denied twice due to being young), and it took years more until I did look sick. So, I needed someone as scientific and brilliant
    who was challenged by this so called mystery illness. To summarize, I was tested for disability diagnosis documentation and continued seeing him for 8 years until he closed for his heart surgery. All those years
    prior to my divorce, he accepted my ex's health insurance and my family helped with my supplements. Then, I could not return after his practice reopened due to being on Medicare and very low income (single).
    The others who posted you, gave you, imho, the best doctors advice. I have heard Drs' Enlander and Levine speak at recent conferences and are very smart and compassionate. But found
    I cannot tolerate antiviral tx due to liver and gut detox issues. And cannot tolerate any therapeutic doses of glutathione (methalation) or that group. It is not hard to know where you have been and how you feel
    that hope is waning. Somehow, as others said, my memory with names makes me yell,........one has to pause and reconsider, take a deep breath and know that you are on the right track today, in the oresent. You found this wonderful supportive group who live what you live with and know how you feel. From here, just let go for the moment and you will find what comes next. As far as writing or blogging, Jody's blogs helped me enormously a few months ago when I found this forum.. So, Spitfire, know tha Sue C (creamcheese) is cheering for you, and saying a prayer thatyou find your way with hope.
  10. Julia Rachel

    Julia Rachel

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    Hi Spitfire:
    Have you tested positive for any of the viruses or co-infections? Do you have a diagnosis as of yet? If you have not been tested, I would focus on getting tested for the EBV (IgG AB & Nuclear Ag AB) , HHV-6A,Thyroid (TSH,T-4 and T-3), Micoplasma, CMV, Chlamydia (all 4 tests), Testo, Cortisol and DHEA levels by a doctor who knows these tests well and how to read the results. This will give you a diagnosis of CFS/CFIDS/ME or rule it out. A CFIDS/CFS/ME specialist would be the best. I would suggest calling All the Hospitals in your state and asking them if any of the doctors who are associated with their hospital are considered Chronic Fatigue Syndrome specialists. I have tried this approach and have found a good CFIDS specialist this way. I am a scientist and trust scientific data. I am not into self medicating. However, this site as well as others is an INCREDIBLE wealth of information and the folks are amazing. Blessings.Julia.....http://vlgonvalcyte.wordpress.com/
  11. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I have tested positive for all of those since the beginning. Actually CMV, no..I am free of that. But I have been tested and I have CFS..that was not what I was asking. I need a good doctor. And, truth be told, there may not be one! I say that because I am super sensitive to meds and supplements and have problems..so many illnesses, that one has to be well versed and since they really don't know what they are dealing with...I struggle, as do many.

    Thanks to Sue C for such a nice response and to all of you!

    I am going to go to an MD, acupuncturist who does kineseology too. We shall see what happens. I would go to someone who was expensive if I really felt that they could do something, but even then, I only have so much money. I will keep plugging away!
  12. Carrigon

    Carrigon Senior Member

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    I'm not near you, I live down by the Maryland border. All the doctors here suck. They know nothing about CFIDS/ME and their office staff treats you like you are insane if you dare say you have it. Their approach is to ignore it.

    You'd get more help if you studied herbal medicine and self treated according to symptoms.
  13. CindyWillis

    CindyWillis

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    Go to Dr. Sharp in Fort Worth Texas. He follows Cheney and takes insurance

    Try Dr. Sharp. I have almost fully recovered with him in 4.5 months.
  14. CindyWillis

    CindyWillis

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    The cell signaling factors really helped me a lot. See Dr. Sharp for them

    The cell signaling factors are critical. I recommend you see Dr. Sharp in Forth Worth Texas who can give them to you.


  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hampton, NH
  16. CindyWillis

    CindyWillis

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    I take Cheney's cell signaling factors through Dr. Sharp and only found it tricky to find the right time of day to take them. I am a night person so take the AM every evening at 6:30 and the PM in the middle of the night at 3:30. It took me a month to figure that out although it was on Dr. Cheney's website as clear as day that night people may need to shift the time around. Everytime I take it (twice a day) I feel GREAT. Increased energy and ready to go until bedtime. I would in no way would question taking them but take the effort to figure out the best time and if it makes you tired, you have the opposite time. If you get increased energy then hour by hour move it up or backwards until you get the most energy from them. There is nothing to be afraid of, he just may not understand what it is and needs more information.
  17. CindyWillis

    CindyWillis

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    Dr. Sharp works with Dr. Cheney and takes insurance and follows Dr. Cheney's protocols and has his medicine. His wife and son have the illness as well so he is very sympathetic and helpful. I got better very quickly. I paid the $50 for Cheney's website and studied it closely and follow it and work with Dr. Sharp as well.

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