FFC -- Test results (2nd visit, Dec. 19, 2005)

Discussion in 'Fibromyalgia Main Forum' started by Juloo, Dec 20, 2005.

  1. Juloo

    Juloo Member

    Got the test results back from the first 27 vials of bloodwork. Lots of work to be done!

    Low Iron
    Insulin Resistance
    Decrease NK Cell Activity
    Increased RNase-Lactivity
    Candida Overgrowth
    Abnormal Lipid Panel
    High C-Reactive Protein
    Low Pregnenolone
    Low Growth Hormone
    Low Testosterone
    Adrenal Dysfunction (DHEA, Aldosterone, Cortisol)
    Low Thyroid
    Low b12
    High Liver Enzymes (high was 'normal' for so long and no other doc cared)

    Not much of it surprises me! Most of it I either knew already or suspected strongly. Am surprised about Insulin Resistance, but since I already have hypoglycemic episodes (and no evidence of diabetes yet), Dr. B is holding off prescribing meds which might make the hypoglycemia worst. This is the first time the C-Reactive Protein has been high as well, although with my family history on my father's side, this doesn't come without warning.

    Fortunately, the blood coagulation defect is not going to be treated at this time. The less specific test came back positive, but the more specific test came back negative. So if I don't make progress, this can be looked at closer in the future.

    Had a few more vials of blood taken for more testing -- minus EBV, which I already know is positive. Another month, and I'll get the results of those.

    It was a nice trip to Atlanta. I took my son with me as he was out of school. We visited a Natural History museum after my appointment and stopped to see an Aviation Museum on the way back to Florida.

    From here on out, I'll probably be doing the rest by phone.


    [This Message was Edited on 12/20/2005]
  2. Juloo

    Juloo Member

    I've definitely got a lot of stuff to think about. I think I'm going to have to plan a half day just to sit down and figure out when I'm supposed to take what supplements and meds so that I don't take something with something else that I shouldn't!
  3. meowchowchow

    meowchowchow New Member

    Thanks for posting! What did she prescribe for you?
  4. Juloo

    Juloo Member

    She's prescribed the following supplements:

    Maitake, Chelated iron, Liv52 (to help the liver clear out), Omega 3s, and DHEA and Pregnenolone. I'm going to have to go slowly with the last two because I've taken them in the past and after a bit I get premenstrual symptoms that worsen. I'm also going to be watching the iron situation. I get nauseated if I take too much, so I may have to skip days.

    Then I've got the followng meds to add:

    Cortisol, Testosterone cream, and T3.

    I've never actually taken cortisol, but have taken licorice and ACE drops. I'll see how I do. I can always switch back if the supplements are kinder than the hormone.

    I'm actually looking forward to the T3. I've known for quite a long time that something wasn't right, thyroid-wise, but it took the FFC testing to find the problem.

    There is a possibility that I will also need to go on Glucophage for the insulin resistance, but Dr. B. is going to wait and see if some of the other treatments help in that area. The Glucophage can have a side effects of causing hypoglycemic episodes, and since I already have evidence of that, she doesn't want that to become worse.

    These supplements and meds are added to the ones I'm already on: Nystatin, NT factor, TF4000, and Daily Energy Infusion. I'm temporarily going of of the Energy Extract because it has 7-Keto, and with the pregnenolone above, it would be too much for me. Oops -- and Xyrem.
    [This Message was Edited on 12/21/2005]
  5. auntyemnga

    auntyemnga New Member

    Juloo,

    At my 3rd visit I asked Dr. B about virus testing and she said they'd changed and was now waiting awhile before testing for viruses.

    Since you had blood drawn on your 2nd visit, did Dr. B comment that they've changed the protocol back to testing for viruses on the 2nd visit?

    Sorry, I got a little confused (which doesn't take much these days!),
    Sheila
  6. Juloo

    Juloo Member

    I told her that she'd better get me now, as I'd probably do check-ins by phone as I live in another state. Do you know why the protocol changed? I don't have the hypercoagulation situation -- could that being positive instead of negative been an issue?
  7. auntyemnga

    auntyemnga New Member

    problem could be the difference. I do have that as a problem. I think they try to fix things in a certain order. 1. Endocrine system 2. Hormones 3. Viruses and I don't remember what else.
    I've had thyroid cancer so my endocrine system is all messed up. I won't let her mess with my thyroid. I've had breast cancer twice. She put me on 4 different types of hormones and it really messed me up so I quit taking them.
    I don't know what she'll have planned when I go back on the 4th.
    Thanks for your response!
    Sheila
  8. pawprints

    pawprints New Member

    Thanks for the update on your appointment and your post on the Xyrem. I had tried the Xyrem a few times before but always had side effects, which I now think were due to not sleeping long enough. Perhaps as you mentioned the higher dose helps more.

    By the way where in Florida did you drive from? I was originally from North Florida and love it there.

    Happy Holidays.
    Shana
  9. pawprints

    pawprints New Member

    I grew up in Jacksonville. Now I am in South Florida and miss North Florida so much, especially the beaches and the people.

    I give you alot of credit for making that drive to Atlanta. You must be in decent shape to have done that drive. Did it wear you down?

    Good luck with the next few nights sleep. I never thought to go up that high of a dose. I just felt wired all day on the lower dose.

    I may switch to the Georgia center since it is closer and so many posts seem positive about it.

    Shana
  10. Juloo

    Juloo Member

    It's just a little over six hours from here. I take non-Interstate roads through Callahan, up to Waycross, and over to Tifton, GA. Then I-75 up from there. A couple of things that help: it's the winter (I hate the summer heat because it really drains my energy), and I plan recuperation time into the end of my trip. I just couldn't do the trip on back-to-back days, so I drive up on Sunday, see the doctor Monday a.m., drive back Tuesday. Also, getting in on Sunday and leaving mid-morning on Tuesday avoids all that awful Atlanta traffic.

    This second trip I took my son with me to keep me company. He's 9 and a good traveller. Since he is less likely to be so involved in the trip that he will willingly skip a meal, I am reminded that regular stops are required, and that helps to make the trip less stressful.

    Another benefit is that I work with my husband, so he's flexible about what time I made it into work the couple of days following the trip.

    Admittedly, I am in very little pain, as CFS is the biggest problem. If I have to, I do the big 'no-no' of guzzling caffeine during the trip, but I kept it down to one bottle of soda up and one back. Also, I listen to books on tape in the car to keep from being bored. We had very good weather -- cool and clear -- and even though the landscape is very stark, I find it beautiful to drive through the southern countryside during the winter.
    [This Message was Edited on 12/24/2005]
  11. lolee

    lolee New Member

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    lolee
  12. pawprints

    pawprints New Member

    Sounds like you made the best of the trip and took it at a good pace. Guess you can do phone consults now that you are underway.

    Happy Holidays.
    Shana