Great Smokies Ashville USA

Discussion in 'Fibromyalgia Main Forum' started by quilp, Oct 22, 2006.

  1. quilp

    quilp New Member

    I have recently had a diagnostic test involving a urine test. Yet to receive the results. has anyone else had such a test and if so was it usual. The test was around $400 !
  2. Lendy5

    Lendy5 New Member

    Hi Quilp - Do you live in or around the smokies? We are thinking about moving to that area. We just got back actually and always hate to leave. It's so beautiful this time of year.

    P.S. I haven't heard of this specific test but would be interested to find out about it.


    Thanks!
    carolin
  3. springlakeorphan

    springlakeorphan New Member

    Sorry I don't know about the test you are speaking of.Was it for Fibro? Let us know more about your health.
    PS I'm from Cashiers. Thanks,Mary
  4. Scapper

    Scapper New Member

    I've had several tests done in the past from Great Smokies. I had saliva and stool tests done....but I don't think I had urine, can't remember.

    However, I do know that this facility is well-known, they perform extensive out of the ordinary type testing (not done at your run-of-the-mill labs).

    They are expensive, I know. I was able to get a portion covered by insurance though.

    I hope they come up with something helpful for you!

    scapper

  5. quilp

    quilp New Member

    More to the point scapper did any of the tests prove useful to you ?
    Sorry, I suffer from CfS and like the rest of you I have suffered dreadfully during the last eleven years. I never thought it was possible to suffer so much without dying.
    In answer to your other question I live in the UK. If Great Smokies clinic do manage to help me, you know what I might just live there in the future.
    I feel like crying; I read some of the posts and in empathasing tears just roll down my cheeks. I am incredibly unhappy. Life as a healthy person wasn't exactly a stroll in the park, but this illness is enough to finish me off.
  6. Slayadragon

    Slayadragon New Member

    I looked through my files and realized I've had a bunch of tests done through Great Smokies. I didn't recall that all of them were from there. Some were from years and years ago, though. They may have been eliminated or changed significantly by now, with additional ones being added.

    Here are the ones I found:

    **

    Stool Test:

    I get stool tests done there when my system gets messed up.

    They're very good at finding parasites. I'm thinking I may have one soon since I was in some rural regions of Japan recently and could have picked one up. My system hasn't been great since I've been back.

    They're fine at measuring probiotic levels,, but that's not that helpful since most of us take a lot of probiotics regardless.

    The thing that might be especially helpful is that if you do have a lot of yeast or a particular kind of bacteria, they list the kinds of substances (prescription as well as natural) that might be helpful in getting rid of it.

    (Or at least, they did this in 1997. Or maybe they do it only if your doctor orders it.)

    For instance, on one test, they said that I had Klebsiella Pneumoniae that would respond well to six particular antibiotics as well as citrus seed extract. They said it would respond less well to berberine (goldenseal), oregeno oil, sanguinaria (whatever that is), plant tannins (don't know that one either) or uva ursi.

    On a 1996 test, they said that I had significant yeast and that it would respond well to Diflucan and Itraconazole (but less well to nystatin). They also said it would respond to caprylic acid and sanguiraria, but not as well to garlic, undecylenic (not sure what that is), and plant tannins; and not at all to goldenseal or uva ursi.

    I don't know if this was accurate or if they still do it. It would be cool if it did work, though.

    I took some of those substances (and did other things), and those problems went away (temporarily) at the time. Whether the other non-recommended substances also would have worked, I don't know.

    The stool tests look at well you're digesting your food. There are a bunch of other markers, but I don't know what they are.

    **

    Here's an "Elemental Analysis Hair" that I did in 1996. I measures heavy metal toxins. They cut of chunks of your hair (it has to not have coloring on it) and then analyze it.

    I see about 30 substances here. They also do things like Calcium/Magnesium and Salt/Potassium ratios.

    On mine, for instance, it says that mercury is somewhat high (chelation and removal of dental problems supposedly took care of that problem) and that manganese, chromium, and boron were low.

    Based on the hair test, they suggested that abnormal minerals were probably contributing to fatigue (Hg and Cr), and allergies. They said that glucose intolerance and general toxicity might be problems.

    These results are supposed to tell you what to supplement in your diet (e.g. chromium) and what you might try to get out (e.g. through chelation.)

    **

    A test I did in 1998 was a detoxification profile. It stated that my detoxification mechanisms were working adequately. I think that the results of this test were one of the reasons that my doctor has not encouraged me to try chelation, even though he has a lot of patients on it.

    **

    Another test was called "Women's Hormonal Health Assessment." I had that done in 2002. (I'm almost sure this was a blood test.)

    It measured progesterone, DHEA, testosterone, sex hormone-binding globulin, three kinds of estrogen (estrone, estradiol, and estriol), as well as factors related to estrogen.

    This suggests whether supplementation might be useful, or whether supplementation is at the right level.

    In my case, an component called 16alpha-Hydroxyestrone was found to be above the reference range. It said that this was associated with a variety of diseases and causes. Their recommendation was more cruciferous vegetables, normalizing body weight, exercise, omega 3 fatty acid and flaxseed.

    I think the doctor recommended that I take an unusual supplement for a while, which I did. However, since this test was done when I was younger and I have now moved into premenopausal, I'm not sure if I should still take the supplement. I suppose we could have the test done again, but (now that it's clear that my immune system is a major problem) we're working on that for the time being.

    **

    Another test was for amino acids, done in 1999.

    . Based on the test results, supplementation of specific amino acids are recommended. It also suggests specific vitamins/minerals that might be useful.

    For a while my doctor was having amino acid formulations compounded individually for each patient. I don't know if he does that any more. I found the compounded ones to be expensive, but did continue to supplement with ones that seemed particularly low.

    As might be expected for someone with mood and CFS disorders, my phenylalynine, tryptophan, and tyrosine levels were particularly low. I have found supplementation with dl-Phenyalynine to be especially helpful.

    The suggestions for me for vitamin/mineral supplementation were pyridoxyl 5-phosphate (B5), B12, thiamine/riboflavin, niacin; A or D or E or beta-carotene, and magnesium. I forgot all about this test until now, but I just realized that those are indeed the supplements that I now take. (Folic acid, zinc, manganese, moybdenum and zinc did not seem to problems for me, and I do not take these.) Maybe this was buried in my subconscious memory, or maybe I've just found that I feel better with them. I don't know.

    The test also shows susceptibility to various disorders. Mine suggests that osteoporosis and neurological disorders are likely to be problems. I've spent a lot of time getting my moods in order. Osteoporosis runs in my family. I've since been taking natural progesterone (which builds bone) and natural estrogen (which prevents bone loss). Recently I had a bone density test, and it was absolutely normal. If I had had doubts about taking those substances prior to the test, I think it would have convinced me that maybe it was worth the risk.

    **

    The most recent test I had done was a genetic test for immune components. It was done in 1992.

    There are five immune markers measured. Four of mine showed abnormalities (one of the genes was "bad"). One (related to the arthritis, asthma, osteoporosis and cancer) was normal.

    Apparently this is not a "one good gene = fine" type of thing. One bad gene is enough to cause problems.

    The tests suggest some things you supposedly can do to help the body with these problems. For instance, for the chronic inflammation one, they recommend fish, colorful fruits and vegetables, less vegetable oil and fatty meat, fish oil, and milk thistle to reduce risk. If inflammation is present, they recommend boswella, licorice, tumeric, and possibly corticosteroids.

    I don't know that their suggestions on what to do about the problems are that helpful. However, this was the first test that I got done that showed there was something really wrong with my immune system, and that it was genetic. (My doctor said I was in something like the bottom 5% of the population.)

    Now that the tests for Natural Killer Cell activation, Rnase activity, cell death and viral load are available, I would be much more inclined to get that one. (It's from another lab.) The genetic testing was interesting, though.

    **

    I imagine they do lots more tests, too. I can't tell you what they do though.

    **

    Some doctors do not believe that Great Smokies is very reliable. I tend to think that they do the tests quite well, and that their answers are consistent with my own experiences.

    Whether they turn out to be really helpful for you (or provide you with any information that you hadn't, through trial and error, figured out on your own) is another question.
  7. deliarose

    deliarose New Member

    which lab did yr most recent viral load tests?

    Was it Redlabs in Nevada?

    tnx
    delia
  8. Slayadragon

    Slayadragon New Member

    It was done by

    Immunosciences Lab
    Beverly Hills, CA
    310-657-1077

    They have a pretty good Web site, although unfortunately it doesn't describe different tests. (There were about fifty of them on the test order. I think this one was simply marked "CFS".)
  9. Scapper

    Scapper New Member

    "More to the point scapper did any of the tests prove useful to you?"

    Quilp: Sorry to hear you are suffering so badly. I too suffer daily with CFS.....for almost 12 years now.....not easy to say the least.

    I don't have copies of the tests that were run so I'll try to recall as best I can. They were done in 2003 so I basically just remember the outcome.

    I had stool done. Not sure what my doctor ordered or what they check for. Lisa above detailed the stool analysis very well. Mine came back showing a specific bacteria that needed to be addressed.

    My 24-hour saliva test was very validating. It showed how exhausted my adrenal glands are. Seeing that my cortisol was the lowest in the a.m. (rock bottom low) was very validating as to why I'm so severely sick in the a.m.

    The testing helped to give my doctor direction as to what to treat first. He focused on my adrenal glands.

    I'm not sure what your doctor is looking for????

    Please let us know how you do with your urine test.

    I hope I answered your question.

    Hang in there!!!!

    scapper