FFC Follow Up test results!

Discussion in 'Fibromyalgia Main Forum' started by ldbgcoleman, Sep 13, 2005.

  1. ldbgcoleman

    ldbgcoleman New Member

    I started treatment at the beginning of May. I was intially tested and they found: Low NK cell activity, Adrenal Fatigue, Thyroid, and Hyper coagulation. After I started treating the hypercoagulation I was re-treated for viruses. They found mycoplasma and 16 times higher than normal EBV.

    I Started treating the first four things at at the beginning of June. I started treating the bacterial and viral infections 9 weeks ago.

    I was retested for the first four, 5 weeks ago. Everything has drastically improved with the exception of the Adrenal Fatigue. I was taking Licorice for this instead of the cortisol mainly because I thought cortisol would make me gain weight. I am still not in the normal range for any of this but the numbers are much better.

    I will not retest for the infections until December because they want me to be on the antibiotics for a miniimum of six months. I will stay on everything I am taking until then. I am continuing the Heperin for the Hypercoagulation as well.

    I am feeling about 75% better. Most days I go all day and fix dinner etc... I am making plans, I am looking forward to doing things, I am keeping obligations and not canceling at the last minute. I would never have believed this 5 months ago.

    I felt so much better that I knew what I was doing was working but it really felt good to see it on paper. The one thing I didn't take their advice on taking the cortisol for the adrenal was the only area I showed no improvement. I feel like I am really on the right track.

    Take Care everyone and I am happy to answer any questions! Lynn
  2. pumpkinpatch

    pumpkinpatch New Member

    I'm so happy for you. Nice that you've had such progress and they pinpointed all your trouble areas.

    I get my retested and some new reports back next week. I'm inching along and definitely have more energy. You've been so encouraging for everyone here.

    Still looking forward to skiing!

    Cindy
  3. lbconstable

    lbconstable New Member

    Hi Lynn,

    Thanks for the update! Your progress has been such an encouragement for me.

    I have felt so under the weather for the last several weeks. But I think I'm feeling so crummy as a result of immune response - so that's a good thing.

    Today and yesterday have been so much better. I'm hoping I'll have a reprieve from the immune response for a bit here. I'm taking Heparin (4 months), Transfer Factors (2 months), a very low dose of Cytomel (T3 for thyroid), and a bunch of supplements. I have taken Cortisol in the past - again very low dose. I went off of it when I first started the Heparin because I was feeling so much better. But now I'm kind of sorry I stopped taking it.

    I've thought of starting Licorice. How much do you take and what brand are you taking?

    Are you still taking antivirals? How long do you need to take them?

    Love, Laurie
  4. jaltair

    jaltair New Member

    Thanks for sharing with us.

    I've thought about going to a Fibromyalgia and Fatigue Center; however, problems with paying inhibit that! I'm going to a PMD internist right now and she seems pretty open to ideas that I put out; I just thank God for her.

    The hypercoagulation sounds interesting, and I've read about what others have said regarding this. However, I've had studies on platelets and all has been well thus far.

    Good luck, and keep us updated!
  5. Countrymom

    Countrymom New Member

    for sharing. I go for my first appointment next Monday.

    You are my inspiration to go to FFC Atlanta and I hope I have as great a response as you have. Congrats!!

    Dani
  6. MKlady

    MKlady New Member

    So great to hear your good news! What a lift tonight for me as I'm having a terrible time just adjusting to the supplements I started last week after my first FFC visit - nausea and insomnia mostly. I'm hanging in assuming that it's a good thing but have talked to the nurse daily! I get my lab results week after next. I'm so hopeful about this treatment and I'm so happy for you that it's working. Gives us all hope!!
  7. hopeful4

    hopeful4 New Member

    Lynn,
    I'm so glad for you that your progress is so dramatic! 75% improvement sounds like a miracle! You're soooo getting your life back.

    I was on the cortisol for several months, but stopped that and testosterone due to severe irritablity and anxiety. Just thought I'd tell you that I did not gain any weight on it.

    Your positive results are inspirational!

    Best wishes,
    Hopeful4
  8. rileyearl

    rileyearl New Member

    Hi Lynn,

    How wonderful that you can go all day! I'm so encouraged by your report. My second appt in Seattle FFC is next week. I guess I'll find out what magic powders will cure me then!

    Francie
  9. onedaymagpie

    onedaymagpie New Member

    Hi Lynn:
    Great news! That was one thing I really liked about the FCC approach (I go to the one is LA) is that there is an objective way to test the results. From my prior experience in seeing a doctor who only treated the candida, and was able to get that number under control years ago when I first came down with CFS, I felt so much better and was able to work full time.

    You have provided so much encouragement to those of us, including me, who are still in the earlier stages of treatment (3 months). While I still have lots of crappy days, I am having a day or two here and there where I am feeling better. It will be really interesting to see how your tests in December turn out - pls keep us posted.

    I do have a few questions: I also have high EBV. What anti-viral do they have you on and what dose? I am on Valtrex and started hyperion about 4 weeks ago and am taking 50 cc twice a day. What amount are you taking?

    Also, did they retest your NK cell activity (mine, like I think a lot of us, was low, too)? If so, what was it and what is it now? And what have you been taking for this? I am curious to compare notes . . .

    Thanks for the inspiration,
    Maggy
  10. Shannonsparkles

    Shannonsparkles New Member

    Keep us updated. :)
  11. justlooking

    justlooking New Member

    and all of your updates. You all are my guinea pigs LOL.

    I'm glad to see so many feeling better and believing they are getting better. Keep us all updated on your progress or if anything sets you back....its all very interesting!

    Congratulations on the start of getting your life back.

    Sincerely
    JL
  12. laura81655

    laura81655 New Member

    First of all, Congrats on all of your hard work working with the Center. It sounds like things are going so much better. Can you pinpoint one of the treatments that have helped you? Or do you think that it's a combo of everything you have tried?

    I'm going to the Los Angeles FFC 9/29. I'm wondering how much they will be able to help because I haven't been sick since 2003 during my last job working with High school kids. They came to school sick quite often. I was sick with Flu, colds, sinus infections that whole year.

    Now, I have pain just about everywhere, and crushing fatgue quite a bit. I'm hoping the bloodwork will reveal whats going on. It's encouraging to see positive results. Thanks for keeping us informed. -Laura
  13. ldbgcoleman

    ldbgcoleman New Member

    Hopefully this answers all the questions! Thank you all for the support! I need it.

    They did not retest NK activity because the test is $350.

    Adrenal fatigue stayed the same The licorice I am taking (and the DR recommended) is Gaia Garden and it is inexpensive. They have a website. It comes in liquid. You can put it in tea and it doesn't taste. 20 drops in the am and 10 drops in the afternoon for a pick me up. I couldn't tell much difference with it but it is worth a try at the low cost.

    Reverse T3 it was 169f and now it's 33Lf whatever that means it is much better and I am staying on the same thyroid dose

    Hypercoagulation- They did not repeat the entire Thrombotic panel. They did repeat Fibbrinogen which was 459 and is now 444. Some progress.
    Cardio CPR- was 8.6 and is now 4.7. I am doing great here. This one is scary because anything over 3.1 is at high risk for cardiovascular disease.

    I am taking Famvir for the EBV and Doxy for the mycoplasma. I will continue on everything until Jan 1. Then we will reasses again

    We also did some cancer screening panels and they all came back negative. She wants me to get a colonoscopy as well. I am planning to get in tip top shape.

    Tonight my huband and I are starting a Latin Dance class (He thought I said lap dance and agreed! Ha) I never thought 5 months ago I would be Latin dancing instaed of crawling into bed.

    I am prayng this works for all of you and my results are lasting. I also hope everyone will keep posting their results. Progress seems slow at first but when everything kicks in watch out! I hope I have answered all the questions. If not ask away! Lynn
  14. Defibro

    Defibro New Member

    I got my test results in August and turned out that I have the same as you, so far:
    Low NK, Adrenal fatigue, Thyroid, and Hypercoagulation.
    I am on Heparin now for 2-1/2 weeks, 2 weeks on Thyroid (just started the 25 mcg), cortisol, Bio-identical hormones, progesteron, and testesteron. He also wants me to do GH, I am waiting for the insurance approval for that (require pre-approval).
    I am not feeling any better yet, may be tiny winsy (benefit of the doubt), but at least I have no side effect from the medecine, or supplement. Is it may be, because I have some viruses that will show up latter (when they order new tests), after the heparin takes effect??? Sooo here comes my question: When did they test you for the viruses?


    Thanx so much for your report, waiting to hear more good news..
    Defibro
  15. ldbgcoleman

    ldbgcoleman New Member

    Sounds like we are on the same track! I tested for the viruses about 3 weeks after I started on the Heperin. The got the results 3 weeks after that then finally started the ABX.

    The Heperin was very hard for me at first. I got very tender and swollen. That has gotten much better and now it is no big deal. I still hate swollowing all the pills though Yuck!

    The ABX made me really sick for about 5 days or so then I really turned the corner. I will warn you I cannot get in the sun at all now because of the Doxycyclene. I had a sever reaction. If you take that be very careful until you know how you will react.

    Please keep posting about how you are doing! Lynn