Heparin Users FFC or OthersAdvice

Discussion in 'Fibromyalgia Main Forum' started by pawprints, Jul 14, 2006.

  1. pawprints

    pawprints New Member

    I have been on Heparin almost one year. Recently, my FFC doctor(Sharp) said I could stop the shots. I am so excited.

    My question is should I request a repeat of the original ISAC panel? He based this on my PTT level of 29, not on the ISAC tests which he used to diagnose me.

    I can not tell that I feel any dfference from the shots. I will speak to him by phone on Monday and wondered how other doctors have decided to stop the shots.

    Thanks for any advice,
    Shana
  2. MtnDews

    MtnDews New Member

    Shana,
    Why were you put on Heprin in the first place? Did you have a blood clot? Did the dr do a clotting panel on you? If so, what clotting disorders do you have? (I have factor II and Factor V Leiden) I think you would have to be off of blood thinners to have the panel done. Is he going to put you on Warfarin or Coumadin? No shots involved with those!
    H
  3. pawprints

    pawprints New Member

    to your questions..I had the ISAC panel done for hypercoagulation.

    No mention on other drugs, but I will know more when I speak to him on Monday. He will probably recommend a natural alternative.

    Anyone else know the answer to my original question about bloodwork to be done by the FFC or other doctor letting you know the Heparin has dissolved the fibrin.

    Thanks again.
  4. Mikie

    Mikie Moderator

    Is usually used for overgrowth of fibrin in those of us who have suffered chronic infections. Our type of hypercoagulation can be different than that which produces blood clots. The ISAC panels are a very good tool to diagnose this condition.

    My doc and I used it empirically and it really produced a strong immune reaction when the pathogens in the blood, hiding in the fibrin, were exposed to my immune system. I only did the injections for three months.

    If it were me, I would talk to the doc about whether he or she thinks retesting is a good idea. Good luck.

    Love, Mikie
  5. onedaymagpie

    onedaymagpie New Member

    I would ask for the blood test, especially after a year - that would be interesting to know what it tests at.

    My FFC dr put me on heperin for about 4 months or so (also for fibrin)- but said that I shouldn't be on it any longer than that. My very basic understanding on taking it was that it would clear out the fibrin so as to expose the various items we were going after (viral and candida) that would "hide" in the fibrin. But that once I stopped the heperin, the fibrin will slowly return.

    I really didn't notice any difference in how I felt either before, during or after the heperin.

    Please let us know what your doctor says about this - I would be really interested.

    Take care, Mag

  6. pawprints

    pawprints New Member

    I will ask on Monday and let you know. My only concern is the money issue and my doctor is leaving the FFC, so I don't know who would get the results.

    I didn't know the fibrin comes back. I think Nattokinase will help it stay away. I will ask him about this as well. Did your doc mention that supplement to help breakdown the fibrin?

    Regards. Hope you are doing well!
  7. onedaymagpie

    onedaymagpie New Member

    Yes, I should have mentioned that. He advised that after I stopped the heperin, to take Lumbrokinase, which I understand is very similar in effect to Nattokinase (as I try to make sense of it all in this brain fog). Ironically, while on the heperin, he had me on an am and pm dose, but after the heperin, said to just take one a day.

    As for the cost - while my insurance does not seem to cover much, at least it has done the blood tests by the FFC. If you're paying out of pocket . . . Your doctor could probably tell you the cost - it seems like some tests are reasonable in price and others - outrageous. Also, if you stay with your doctor when he leaves, I'm sure he could get your results from FFC.

    You may already do this, but after the FFC advices a supplement, or whatnot, I find I almost always find it on the net for much less. Indeed, many posters here have steered me to less expensive sources.

    Looking forward to hearing from you,
    Maggy