Tansy - ISAC coagulation

Discussion in 'Fibromyalgia Main Forum' started by Rosiebud, Nov 15, 2005.

  1. Rosiebud

    Rosiebud New Member

    Hi Tansy

    I was re-reading one of your answers to a post of mine and saw you outlined that ISAC coagulation is common with people with CFS / Fibro.

    My daughter has Factor V Leyden which has caused her to miscarry and have an ectopic pregnancy. When she gets pregnant again, she will have to inject heparin daily.

    I asked my doctor to have me tested as this can be an inherited problem but he saw no reason to do this as I didnt miscarry.

    I've noticed more and more members from the States getting heparin and wonder if I should be taking a daily aspirin or taking literature to my doc to read so he will agree to the test.

    My daughter has CFS/Fibro too, should she be taking heparin now? I know you're not a doctor Tansy but I dont trust the NHS. My daughter's blood was tested after second miscarriage, they wrote to her that blood was fine. Two years later after losing a tube to ectopic pregnancy, they told her (in a very offhand manner I was there) that she had actually tested positive for Factor V Lyden two years before.

    Any advice will be, as always, greatly appreciated.


    [This Message was Edited on 11/15/2005]
  2. tansy

    tansy New Member

    Hi Rosie

    Talk about timing. I recently had a phone call from my sister, my niece is having related problems too though not ME/CFS. This now makes it relevant to many family members including my son, who is currently under the “care” of a NHS vascular surgeon. Neither of us are impressed atm. Since early summer he keeps getting blood infections and phlebitis. As you know he was very ill at 14 and gradually got back to 90%.

    I had miscarriages, one successful pregnancy, then found myself unable to conceive even though I had no problems before. Prior to that I had a major pulmonary embolism that I was lucky to survive, was fortunate then to have landed up in the hospital where one of the UK’s top doctors for this worked. The clots had formed in the pelvic region, not in my legs. I was on the pill and had over exercised - long distance run.

    All family members who are affected have poor circulation and test results which one would have thought doctors would take more seriously particularly in light of some of our medical histories and how my paternal grandmother died.

    I hate that doctors can be so flippant; too many of them just stop caring about people and what their lack of interest is costing their patients. Inadequate NHS resources don’t help; doctors are encouraged to go for the quick cheap fix, or use a wait and see policy.

    As a result of self-treating I have no doubt how relevant it was for me. Due to low platelets it took some convincing on the part of others; but thanks to their persistence, then researching it for myself, I was left with no doubts. After my trial and error, and reading lots of feedback on various sources, if I were starting over again I would use turmeric and then add in natto.

    If you have not read them already I suggest the following websites

    ISAC is triggered by intracellular infections. 90% with ME/CFS and lyme disease have ISAC, in 75% PWME/CFS tested a hereditary coagulation disorder was identified. So it is hardly surprising FFC patients are testing positive too.

    Hope the info on these web sites help.

    Love, Tansy[This Message was Edited on 11/15/2005]
  3. Rosiebud

    Rosiebud New Member

    I felt sure you would have an answer for me.

    What happened to you is terrible.

    I'm so sorry about your son too, he was doing so well. And your niece, to have those things in the family and not be regulated, it's disgusting.

    I will look up these sites and I'm going to talk to my doctor again and have my daughter talk to hers. She has been put in touch with the head paediatrician in Glasgow and a woman doctor who is heading research on this blood problem but she is not to get in touch with them until she gets pregnant. I think I'll get her to give them a call now.

    I'm going to email this to my daughter as you explain it all so much better.

    Thanks again and I'm thinking of your boy.

    [This Message was Edited on 11/15/2005]

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