Low level activation of coagulation system

Discussion in 'Fibromyalgia Main Forum' started by cindye, Oct 21, 2006.

  1. cindye

    cindye New Member

    I was wondering if anyone else has been diagnosed with low level activation of coagulation system by FFC and if so, have you undergone the treatment they recommended?
  2. bigmama2

    bigmama2 New Member

    what is the name of that test? was it the fibrinogen? I have been tested at ffc, and my fibrinogen was a little high, but they didn't recommend a treatment yet.

    I don't really understand much about the fibrinogen.
  3. abcanada

    abcanada New Member

    Not sure what that actually means, just curious as I've come to know alot about the coagulation system, recently having two blood clots and being diagnosed with Protien C Deficiency.
  4. cindye

    cindye New Member

    Yes, this has to do with the fibrinogen. My daughter is having blood work done this week to see if her immune system is strong enought to do the treatment. They give you lumbrokinase capsules to dissolve the old fibrin which has been coating the inside of the blood vessels which limits oxygen and nutrient flow into the cells and then you take heparin injections to thin the blood so new fibrin does not develop.

    I recently have been able to find some information by typing in Low level activation of the coagulation system. Each time I do a search, I find more information so apparently it is a relatively new treatment. You can also type in the name of the capsule and get some info.

    They claim to have seen dramatic improvements with this so I am crossing my fingers and doing a lot of praying!
  5. cindye

    cindye New Member

    In talking with my regular physician, she informed me that anyone with this disorder should not be taking birth control pills or any other type of hormone i.e. progesterone or estrogen. She also recommened an appointment with a hemotologist - we have that scheduled. Not doing any treatement etc until after this appointment.
  6. elliespad

    elliespad Member

    Yes, I have this problem also. My initial treatment with FFC included twice daily injections of Heparin for one month. During this month, IHAD ABSOLUTELY NO MUSCLE/TENDON PAIN. Still had joint pain, but the other vanished completely.

    When I switched over to the (very expensive) Lumbrokinase, the pain returned, pretty much right away.

    Went to Norwalk, CT FFC on Nov 7, and he just ran the infectious panel, and hormones again. We'll see.
    [This Message was Edited on 11/09/2006]
  7. MtnDews

    MtnDews New Member

    There are also several blood clotting factors. I have factor II and factor V Leiden. I managed to pass that down to my daughter who also has MTHFR. All these are mutated genes as I understand it. You may want to do a google search for clotting disorders to learn more.
  8. cindye

    cindye New Member

    Thanks for all the info everyone has given. I will continue my research and as I mentioned, we have an appointment with the hemotologist so hopefully that will shed some light on the situation.

    Thanks again and Happy Thanksgiving!
  9. bigmama2

    bigmama2 New Member

    for the info. someday I'll research this more.

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