If you had all kinds of bucks where would you go for help for cfs

Discussion in 'Fibromyalgia Main Forum' started by PaulMark, Nov 6, 2002.

  1. PaulMark

    PaulMark New Member

    a hypothetical quest. of course, if $ were no object say you were like magic johnson, who is on azt but also i found out went to europe for some alternative med. treatments for his HIV, remember now one article quoted my dr. cheney as saying he had 20 cfdis patients with non HIV pos. like symptoms, i'm not one that i know of but i do know they use s. bourdlardi in gut infections in aids patients andhe likes it too.

    so if you had the bucks and had cfids and fibromyalgia, but thisi quest. may be for those with primary dx of cfids like myself i've developed more of the body pain aching later in my 5 yrs of illness as i've progressively worsened,

    where would you go? Cher recovered she has bucks, I wonder what she tried. Naomi Judd had $ she recovered from severe hep C thru conventional and alt. methods,

    interesting subject any ideas from you smart people.

    PM
  2. PaulMark

    PaulMark New Member

    a hypothetical quest. of course, if $ were no object say you were like magic johnson, who is on azt but also i found out went to europe for some alternative med. treatments for his HIV, remember now one article quoted my dr. cheney as saying he had 20 cfdis patients with non HIV pos. like symptoms, i'm not one that i know of but i do know they use s. bourdlardi in gut infections in aids patients andhe likes it too.

    so if you had the bucks and had cfids and fibromyalgia, but thisi quest. may be for those with primary dx of cfids like myself i've developed more of the body pain aching later in my 5 yrs of illness as i've progressively worsened,

    where would you go? Cher recovered she has bucks, I wonder what she tried. Naomi Judd had $ she recovered from severe hep C thru conventional and alt. methods,

    interesting subject any ideas from you smart people.

    PM
  3. allhart

    allhart New Member

    very good ? which i can not answer , i wish they would share there secreats even if we cant affordd them
  4. Shirl

    Shirl New Member

    I would build a house on my property here, for a good couple of people to live in for free, to take care of the grounds, my house and animals, and continue to treat myself!

    I have hospitalization/insurance coming out of my ears, and rarely use it. I don't trust the medical profession with these two illnesses, either they don't know, or they don't care and I doubt if $$$ would make much difference.

    I would not take all those drugs (most are probably unproven), I would not be a 'lab rat' for any doctor or hospital full of them these days!

    I have wondered about Magic JOhnson, he sure as heck looks healthy and its been over ten years that he was diagnosed with the HIV thing, it would be very sad if there is a cure for AIDS and they are not treating the average patient because of money or these lousy insurance people have these days!

    As for Sher, she is so dramatic, maybe she has something that was curable and not CFS. Who knows. I am not big on the celebrities, I commit the horrific sin of not ever watching the Opra Winfrey show!!! can't even spell it.

    I am a total realist, believe half of what I see, none of what I hear!

    I have been doing better by just researching, being on this board, reading books, and listening to people like myself that are suffering and trying supplements, etc. to help themselves, than I ever did with doctors and meds that made me sicker.

    I was just bit over twenty times by an Asia Spider, I did not go to a doctor, I treated myself, this wonderful lady here, Acesnanna, told me to use Vinegar, and it is working, if I had went to a doctor I may not be here right now with all the meds they would have given me!

    My dog was bit twice by poisonious snakes, I called the Vet, he offered to put her down for me. I said no, I treated her with half/half milk, Yogurt, Essiac Tea, and a high protain diet. That was three years ago, she is still with me, oh yes, I said a whole lot of prayer for her and a lot of others prayed too. Also for the spider bits.

    Sorry, you kind of got me on a vent here, which is something I rarely do! Sorry about that.

    Shalom, Shirl






    [This Message was Edited on 11/06/2002]
  5. sybil

    sybil New Member

    Dr Andrew Wright as a private patient.his surgery is about 35/40 miles from where i live,so i can't get an NHS referal.but he has treated someone i know who has ME and she has gone from being practically bed-ridden to feeling well enough to resume employment.this was after 5 years of being told be her family doctor and various consultants,it was all in her head.it turned out it was in her head,a chemical inbalance in her brain!
    he is one of the few doctors in the U.K. who actually believes there is an organic and individual cause for our DD's and is prepared to do lots of tests to find out why we are sick,

    sybilxxx
    [This Message was Edited on 11/07/2002]
  6. sybil

    sybil New Member

    Magic Johnson is probably taking about 25 pills a day to keep him as fit as he is with HIV.
    i have a close friend with HIV,he is very healthy and leads a totally normal life.but,he does take an awful lot of pharmacutical drugs to keep that way.but if he catches a cold,it can take about 6 weeks to get over it.
    in his case ,drug companies are keeping him alive and he is very grateful for the extremely expensive medication he receives paid for by our national health service,


    sybilxxx
  7. Mikie

    Mikie Moderator

    According to "Osler's Web," it isn't HIV which causes people to get so sick, it's HHV-6 which is present in a lot of people with CFIDS.

    I would most likely go see Dr. Cheney as I believe he knows more about CFIDS than most any other doc in the U.S., but I still haven't heard of anyone who is significantly better for having seen him. The reason I would go is because he would run all the pertinent tests to give me a more complete picture of my situation.

    Like Shirl, I am content to read what is being done and pursue it on my own. If I don't continue to get better, I may still go see him. I believe there may well be another stealth pathogen, perhaps a virus, as a factor in my CFIDS. My zapper gets rid of a lot, but stealth pathogens are very difficult to get rid of.

    Love, Mikie
  8. jami117

    jami117 New Member

    If money were no problem, then all the things I need money for now would be satisfied. I would continue under the caring supervision of my doctor, Shirley Scott, since she is very knowledgeable about these DDs and I am seeing very slow progress. But, with all that money, I'd also go to Germany for about a month and try their sleep cure and go to the spas for a soak and massage every single day!! A full month of reduced pain would be heaven!!!!
  9. SharonR

    SharonR New Member

    To Dr.Deepak Chopra, and probably spend a month relearning how to live. Dr Andrew Weil, same thing.
    It's the whole person, environment, physical ailments, thought process, and most of all spirituality, however you call it.
    The series of Bill Moyer/Joseph Campbell was sooo fascinating to me.
    I know that part of my problem happens to be environment, where I live is not where I want to be. So I am in a state of Dis-Ease.
    We were transferred here, and I keep thinking, one more year, and we should be able to sale this huge hulking albatross of a house buy a townhome or condominium and I will take a sabbatical. I am not thru with my life. I will stay married, and meet back when he's ready to retire. I love my husband, we are friends, but simple things please him. Golf on Saturday. You know what, I still have unfinished stuff to do! I have never been to Santa Fe, been to Sedona, Phoenix, but never to the place I really wanted to go. I want to smoke peyote out in the dessert, I want to see what Peru looks like.
    Oh my God, this has turned out to be a testimonial, and I just realized what I have said. Thanks PM, great counseling session..
    I feel better.
    Haste La Vista.
    SharonR
  10. PaulMark

    PaulMark New Member

    jaimy ll7: your post about sleep cure in ger. caught my eye.. how did you find out about this, what is it, and where in germany, it's a big country,

    do you know anything about it, couriouos ??

    thanks a lot PM
  11. Jasmine

    Jasmine New Member

    I would probably visit Dr. Cheney if I had unlimited funds. You pretty much need unlimited funds to see Dr. Cheney. But I got a rejection letter from Dr. Cheney about two and a half years. It seems he doesn't like to see patients who have CFIDS for more than ten years and he was limiting his practise at the time.

    Or I would visit India for several months and see all the best doctors there.

    By the way I read that Cher recovered from Epstein-Barr by using homepathics and something else. Can't remember the second thing she used.

    Love, Jasmine
  12. PaulMark

    PaulMark New Member

    jas: i have seen chen. for 4 yrs. now and gotten sicker and sicker, the prob. is i can't afford to contact him by phone or fax as needed he's smart no doubt,

    where did you read about cher???? do you know?

    god bless and thanks PM
  13. JP

    JP New Member

    Good question...I am not sure where I would go and I would probably want to wake up to a very light massage every day, in my home. I might also go to wonderful spas and have treatments that were nurturing and gentle.

    thanks for the question...jan
  14. AnnetteP

    AnnetteP New Member

    I would stay EXACTLY where I am: with my current dr. From all I've read, I think she's as good as the top dr.s (at least in dealing with my situation she is) who write books: does all the same lab work and tends to go against the traditional views on basic blood work. There is NOTHING she would deny me if I insisted on it (test wise I mean). And, if I tell her about ANY book, she wants the author's name and the full title (unless its one she's already read, and most of what I talk about she HAS already read). By the next visit or two, she's read the book!

    Early on I thought about going to Europe, specifcally to some German hospitals. But, realistically I was so sick and to have to travel back and forth to anyplace long distance was not as alluring as the possibility of a cure. Of course, that was when I first started reading, and like a lot of people would have paid anything and gone anywhere to have anything done, if it offered even the slightest glimmer of hope.

    I'm with Shirl on this, and find myself second guessing EVERYTHING dr.s say. (I even tend to treat my own cats, like Shirl with her dog.) I have to remind myself that my dr. is NOT really a dr. lol I mean in the sense that she's more like me and not big into meds to just bandage a situation. (So, if you want painkillers she's not the dr. to see!)

    I guess I would change this thread to: If you couldn't afford your dr. who would you see/what would you do. And my answer would be: I would keep on doing what I'm doing, which is reading and being my own advocate. Plus, I'd use a lot of the supplements recommended on this site, all the while educating myself on them (to be sure they were what I wanted to take) and I'd use the help of a friend who is an hebalist.

    Annette
  15. teach6

    teach6 New Member

    Annette, I was wondering if anyone else would say the same thing I was thinking. My doc is constantly learning and even doing his own studies on his patients and how they react to certain protocols.

    When my insurance denied coverage for a med he wanted me to try because my dx is not the one they accept he copied an article that shows that CFS patients have been helped with this med. I'm still waiting on the outcome of this. I just know he is in my corner 100% and will go above and beyond to help his patients. I don't think I can ask for more than that.

    When I have questions or problems I call the office and get a response the same day, even if it is the third day in a row that I've called. I am not a number to him, but a patient who is looking for ways to feel better. He is open to alternative treatments too.

    I really doubt I could get this kind of service from a high priced expert. I'm sure they would be too busy to give me the personal attention that I've needed and come to rely on.

    Barbara
  16. kadywill

    kadywill New Member

    I'd go to Ocracoke Island, NC and just "BE"!! I'd help deliver a few babies if I felt like it. Help a few "oldsters" if I felt like it. Soothe a couple of children if I felt like it. I would walk on the beach with my love and would memorize each sunrise and sunset if I felt like it. Someone else would cook and clean if I wanted them to. I would dress casually....or not. I'd enjoy the sounds of the ocean and the gulls. I would hire a pilot to fly me to see my kids and grandkids when I felt like it. I would enjoy everything.....I would just treat my symptoms and forget this illness as best I could. I would just BE....