Results of retesting after 9 months at the FFC

Discussion in 'Fibromyalgia Main Forum' started by ldbgcoleman, Feb 15, 2006.

  1. ldbgcoleman

    ldbgcoleman New Member

    Today I got the results of my retesting for the three major things I have been battleing. I am amazed to see resulkts on paper from reputable labs. I have already been retested for Thyropid which is completely under control and have beaten Candida, normalized my adrenals and raised ny NK cell activity.

    My results are!! drum roll please.....

    Hypercoagulation- I have gone from the highest number she had seen so far 60 to a 2. my hypercoagulation is gone and as of today I am off of the Heperinand the Lumbrokinese! YEAH!!! We will occasionally moniter the Hypercoagulation to make sure it is not returning. I am not sure how often or how long it take to build back up I forgot to ask but am sending an email with those questions.

    EBV- I have gone for a 1:16 which is 16 times the normal level for inactive EBV to .90 which is below the normal level. My EBV is inactive now!! I am continueing on the Famvir for 6 more weeks and then easing off of it! Yeah again!!

    Mycoplasma- the only disappointing thing is the mycoplasma has not changed that much. I am continuing on the Doxy and we will switch to either Cipro or Biaxin when i get off the Famvir. We are changing one thing at a time for now and being cautious. I am anxious to get off of things but I have worked so hard to get better I am not doing anything to screw it up!

    If we can get the mycoplasma under control I will officially be in remission! At this point I will come in every 3 to 4 months for monitoring.

    I am really pumped! I feel about 85% better most of the time. It was Feb 22 2005 that my Rhuemyt told me to find a support group and I got mad and decided to take matters into my own hands. I have gone from going downhill fast with maybe 4 good hours a day and some days being totally bedridden to going all day long most days and doing things I had almost given up on!

    Good Luck to Everyone and as always I am happy to answer any questions about my treatment. Lynn

  2. GBHope

    GBHope New Member

    That's great! I wish you continued good health. I unfortunately cannot afford to go there. Bad credit and no credit card available for that. Due to health reasons, had to go through a bankruptcy and we are still struggling. You keep up the good work!!!

    GBHope
  3. pawprints

    pawprints New Member

    Thanks for staying on this board and updating us with your success. I am so happy you are doing better. Your posts give us hope and also educate those of us working at getting better.

    Best to you in this next stage!
    Shana
  4. suz9601

    suz9601 Member

    First congrats...I did heparin for 7 months and know that is a relief to be done w/the shots..

    On the EBV was it IGG that was elevated or IGM? Did the FCC say that high IGG titers was reactivation>?? Just curious I am trying to figure this whole EBV thing out.

    Did you take antivirals or proboost for the EBV?

    Thanks for your help, glad you are doing much better.
  5. ldbgcoleman

    ldbgcoleman New Member

    Ok I am still struggleing to understand all of this too! b

    The Ebv tests were: EBV early antigen (EBV-EA) IGG AB
    < or = 0.90 it was 1:16

    < or = 0.90 means negative- No antibody detected
    0.91-1.09 means Equivocal
    > or = 1.10 means Positive antibody detected

    EBV IGM AB 2.82 was 1.04
    EBV Nuclear antigen EBNA AB IGG 3.09 was 5

    Suggestive of a past EBV virus infection.

    I took am taking Famvir for the EBV

    I hope this helps! Lynn
    [This Message was Edited on 02/15/2006]
  6. bpmwriter

    bpmwriter New Member


    did you take transfer factor, mushrooms, anything else with the famvir?

    do you attribute victory over ebv to the famvir, the IVs (i believe you were getting these regularly) or both??

    thanks for sharing this info. i've been waiting for someone to post viral retest results. as soon as my taxes for last year are done, i'll qualify patient assistance and might try the famvir.

    eddie
  7. intrigue

    intrigue New Member

    Lynn,

    As always, you have been a hope and inspiration to everyone on this board!

    I am so happy for you! I hope to be in your shoes here in a few monthes.

    - Ellen
  8. cbs1234

    cbs1234 New Member

    Lynn,

    Great news for you.

    A word of caution on the cipro. Read the package inserts carefully. If you take it, watch for any tingling, numbness, tendon or joint pain. These symptoms are a prelude to much, much worse problems.

    Good luck.
  9. ldbgcoleman

    ldbgcoleman New Member

    Yes I am taking T-factor 4000 and Miyake mushrooms. I seemed like I turned the corner when I started the Famvir and Doxy. I tis hard to know which one helped as I started them at the same time but I am guessing the Famvir since the Doxy was for myco and that hasn't gotten much better.

    I stress that my case wasn't as complicated as some and I have not had this as long. Maybe this is why I have gotten good results. I just want people to find a Dr who will listen and order the testing so we can try to get to the bottom of the issues we have instead of just treating the symptoms.

    Lynn

  10. ldbgcoleman

    ldbgcoleman New Member

    I will check into the cipro thanks. I can ask for the Biaxin option. I have taken that in the past with no problems for sinus infections! Lynn
  11. Mikie

    Mikie Moderator

    There are other ABX besides the Doxy which are recommended for the mycoplasmas. Cipro is a very heavy hitter ABX with more side effects than the others. If it were me, I would discuss other options with the doc. Minocin has had excellent results with mycoplasmas and some have done well on Zithromax. Cipro would be my last drug of choice. I can't take it myself as I'm allergic to fluoride but there are other side effects. Some docs have prescribed several ABX together and some rotate the ABX and seem to get results that way.

    I hope you can find something to get rid of the mycoplasmas and I'm so glad everything else is doing so well. Thank you for posting this. We love good news posts.

    Love, Mikie
  12. bpmwriter

    bpmwriter New Member


    one more question! can you remind what daily dose of famvir the ffc recommends? i'm going to try to get my local doc to write a script.

    e.
  13. ldbgcoleman

    ldbgcoleman New Member

    Eddie sorry it ook me so long. Every time I hopped onto my computer I was too lazy to go downstairs and look at the dose! I am taking two 500mg tablets twice a day. I don't think the Famvir make me feel funky I am pretty sure it's the Doxy. I am amazed the Famvir worked and I was thinking the EBV would be harder to get rid of that the mycoplasma!

    Good Luck Lynn
  14. auntyemnga

    auntyemnga New Member

    that is great news!! I am so happy for you. I know it's been a long 9 or 10 months but you were determined to win.

    Keep up the good work,
    Sheila