Crohn's Disease? No, it was ARD!

Discussion in 'Fibromyalgia Main Forum' started by ginnybaby, Aug 30, 2003.

  1. ginnybaby

    ginnybaby New Member

    Hi to all here........I am searching now for information on a REAL doctor to help my daughter with thyroid problems and/or possible adrenal glands that are not funtioning properly. I am in the Dallas-Ft. Worth area........after 14 years of her being in bed and in horrid pain, I finally figured out her problem.......she had a body full of adhesions!!!!!! And all the doctors in the US had ignored and ignored......we just returned from Germany in April where she had successful surgery for ARD and now she is living again---but, can't lose the 30#'s she gained from being in bed sooooooooo long. She is working out 2 hours a day, strict caloric intake, and no weight loss. We just went to a seminar on BRT and that seems rather way "out there".......so, still trying to find a holistic doc or MD that ignores blood work and gets to the problem at hand....Thanks, my heart goes out to all of you---I read many stories......isn't life frustrating at times (to say the least)?????!!!!!! Keep searching for your answers! It took me YEARS, but now Melissa is well!!!!!!
  2. Shirl

    Shirl New Member

    Hi, welcome to the board. The weekends/holidays are slow here, so if necessary keep your post bumped up.

    I can't help with a doctor, but I know we have many members in your area, so hang in there someone will help you.

    It is wonderful to hear that your daughter is doing so well, it sounds like a miracle for sure.


    Again, welcome to the board.

    Shalom, Shirl
  3. ginnybaby

    ginnybaby New Member

    Not sure about bumping the message up, but I will do the research to figure it out--thanks for the nice welcome!
    [This Message was Edited on 08/30/2003]
  4. ginnybaby

    ginnybaby New Member

    Hi Nink,

    ARD is "adhesion related disorder" (or disease)........I prefer to not think of it as a disease! My daughter became extrememly ill at 13 yoa---severe stomach pain, throwing up, etc.........she was diagnosed with Crohn's disease. After much research I found there were no granulomas in the biopsies that were taken (20 plus tissue samples).....plus she did not have the symptoms as the other children in the support group we were attending.......thus began a nightmare search in and out of doctors' offices with all them ignoring how ill she was and telling us she needs an antidepressant......she spent her days in bed in pain, constipation, headaches, aches, severe stomach pain, back pain, etc...........13 years later I was convinced she had endometriosis, even though all ob/gyn's said "no".......found a doc that agreed and he went in via laprascopic surgery and found a pelvis FULL of adhesions.....all her organs were FUSED together and she had intestines pulled down and stuck to the bladder, uterus, etc.......she was a mess........another surgery 6 months after that one and she became worse. That is when I learned adhesions come back, thus our trip to Germany to a talented surgeon that is not scared to operate on the bowel and Europe also has a barrier that is not available in the US............now, she is living again!! And we are soooo thankful, however, she cannot get her weight to budge. She is huge around the stomach area......and so depressed.....I am thinking the years of prednisone has destroyed her adrenal glands and she has no metabolism........she also has polycystic ovaries.........Long answer for a short question!

    BRT is Body Restoration Technique......we decided it is not for us. You hold these vials and they "stimulate" your pressure points and the theory is that the energy created causes the "problems" in your body to go out via urine, etc. and they claim it causes weight loss, cure thyroid problems, etc..........maybe so, but we were not impressed.
  5. kgg

    kgg New Member

    It's so difficult to see our children sick like that.

    My experience is that homeopathic practitioners and some docs who are nutritionally minded will treat hypothyroid symptoms without the labs being abnormal. It's difficult to get mainstream docs to treat without abnormal labs.

    You may not want to hear this but here it goes. . . The years of prednisone may have caused a yeast overgrowth in the bowels, which could in turn cause leaky gut syndrome. That is where the intestinal lining becomes too permeable allowing undigested food to pass through,and this causes food allergies. My son has a lot of them. When someone has food allergies losing weight is difficult. Don't know why, just one of the symptoms of food allergies.

    Health practitioners that treat leaky gut syndrome usually use a lab called Great Smokies Diagnostic Labs. They also may be the people who will be willing to treat the low thyroid symptomatically. If you contact Great Smokies they will tell you people in your area who use their facilities. They have a web site, just do a search. I believe you just email them asking for docs in your area and they will email a list to you.

    Last thought, selenium 200mg/day supposedly helps convert T4 to T3 in your blood. Armour thyroid is T3. So until you find someone, it may be the thing to start with.

    Keep us posted on how she is doing. -Karen

    Another last thought. . . after reading Klutzo's and Madwolf's posts, she also may be dealing with adrenal problems. But the same practitioner should be able to test for that also.
    [This Message was Edited on 08/31/2003]
  6. Shirl

    Shirl New Member

    Shalom, Shirl
  7. crissyfamily

    crissyfamily New Member

    she is expensive and she does tests but she works on adrenals. she is holistic, endocronologist, studied chinese herbs and does weight loss....she started out as a compounding pharmacist. she is 200 hr and 1st tests are usually 1400...she is a tough lady and don't tell her got her name off internet...research anti ageing in dallas off sherry lane and preston...dr. marina johnson...she does not file insurance and you pay up front...she is a tough doctor, but very very skilled....she works on things other doctors don't even have a clue about.

    best of luck to your daughter.....

    take care
    crissyfamily
    [This Message was Edited on 08/31/2003]