for sujay re hypercoagulation

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 26, 2003.

  1. tansy

    tansy New Member

    Thanks to jellybelly's persistance which finally got things through my addled to brain to the bit where bells ring I know I absolutely have to chase this up.

    I'm throbocytopenic so have to go about this purely through addessing chronic infections, I suspect both bacterial (or/or microplasma) and viral due to history etc.

    Did have TH1 TH2 turn around and low supressor cells years back, but my condition has changed in it's nature since then. I'll see if GP is able to access that test herself. Now in the second half of my 22 year illness I have little or no resistence, allergies are calmer but I'm only really making progress with gut symptoms.

    NADH woke me up but highlighted problems rather than address them, years ago had same 24 hour urine test as quoted in research - marked deficiency. Haematologist rubbished this said only people with cancer show these results, I do not have cancer.

    There's problems with neck & spine too which may account for some symptoms. After bad viral infection at 13 found circulation in arms bad if arms above head for long ie when sunbathing. IBS appeared at the same time as if out of blue, stress not so much a factor, viruses or any infection would trigger it off for months at a time then it would just disappear again. With CFS whole GI tract affected. Likewise mouth, sinuses, throat, ears etc.

    Had PE at 22, was on contraceptive pill. Given warfarin after son's birth, ok in that area since.

    Circulation bad, activity on good day improves it to a point, if I go beyond that circulation gets really bad.

    Very very unwell last 5 years, fatigue different, brain worse, sleep problems were bad but now disasterous. I took NADH because I felt as though every cell in my body was grinding to a halt.

    GP wants me to start oestrogen but I wanted to bounce this at you first. Also this is going to be very hard to get accepted, investigated, and if necessary treated in the UK. GP is good but she can't get me "out of area" referrals on NHS. I've looked up the sites, and this convinces me further. Of the tests to indicate this are there a few that are not too expensive and available in regular hospital labs?

    Sorry this has been so long but I'm desperate: my diet's good, take supps etc, always had a positiive attitude, but the underlying problems have got steadily worse over these 22years.

    Your input would be so appreciated.

    Cheers

    Tansy
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  2. sujay

    sujay New Member

    Sorry you're having such a hard time. I'd be very nervous about starting oestrogen with your history (of PE on OC). I think looking into hypercoagulation is a good idea. The tests are realatively expensive, and believe me, I know that can be a problem, but how much money has gone down the drain tending to these symptoms over the years?

    The coagulation cascade is so complicated that even if you are thrombocytopenic and still taking warfarin, you may benefit from addressing hypercoagulation IF YOU CAN IDENTIFY IT. Tests to start with should include CBC, sed rate, PT/PTT and D-dimer, as well as anticardiolipin antibody and lupus anticoagulant. Those tests are all relatively inexpensive and should be readily available. Unfortunately, none of them is a good substitute for the ISAC Panel, available through HEMEX Labs in Arizona.

    I agree you should also try to identify the pathogen (or pathogens) behind your symptoms. I would recommemd the CFS PCR Panel at Medical Diagnostics Laboratories in New Jersey. Dave Berg and Eli Mordecai are the medical directors of the two labs respectively, and I've found both very easy to talk to.

    I'll be interested to hear how you do, and would be more than happy to answer any questions you or your physician may have. (Sometimes I have to answer "I don't know", in which case I may be happy to give you my opinion, but I'll let you know when I'm just speculating.) Good luck to you both. I'll be looking forward to finding out how you progress.

    Love, Sujay
  3. tansy

    tansy New Member

    I was really concerned about using oestrogen, that's why I used alternatives and my GP gave me additional info, she even went on a course for GPs on alternatives to HRT. She just felt things had got so bad we had to try them. I'd much rather address this now. By the way I'm not on warfarin. Just took it for 6 months after son's birth.

    I've always felt the infections never went away properly. I still have low grade fevers for months and night sweats for the last 22 years. I've used all the more natural "bug killers" but don't feel they have worked. Would you in my position try long term anti-biotics and anti-virals? I've been ill for so long doubt most tests would show them up. Am going to ask for heliobacter test though.

    Had another look at info. Problems started after mumps then flu, more bells ringing. Seemed fit most of time but realise fresh air and sport increased my sense of well-being, more oxygen better circulation. Always had too many muscle cramps and the stitch for someone who was that active. Bells, bells again.

    I can't explain how I feel now, I'm having a whole bunch of emotions. I've searched for so long, always sensed something like this but couldn't get to the bottom of it all. It's going to be so very hard to get docs here (UK) to take it on board, but at least there's hope I can stop this horrendous downward spiral.

    Like you I am a mother with a son who has been ill. It started when he was 14, bedridden at first and then a long haul back to where he is now at 26, much better but still struggling. I'm sure you understand that I have to find the answers, not just for myself but for him too.

    Warm thankyou hugs

    Tansy
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    [This Message was Edited on 05/27/2003]
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  4. sujay

    sujay New Member

    My heart aches for you and your son. I have a 26-year-old, too, so I can sympathize with your concern for him.

    I would definitely look into the possibility of hypercoagulation*, and then try to identify the pathogen that might still be behind a lot of your symptoms. If your doctor can't be persuaded to order the ISAC Panel you might want to see if she(?)'d consider treating you empirically with LOW-DOSE heparin. (I'd use the dose we use to prevent blood clots in high-risk situations.) After 3-4 weks of treatment I'd recommend getting the CFS PCR Panel from Medical Diagnostic Labs in New Jersey. I wouldn't want to put you on an antibiotic unless your doctor could identify the pathogen you should try to eradicate. That being said, I do have one patient that I treated empirically (without benefit of lab tests to back up my judgment)and he did recover. However, at that time he and I discussed the risks and benefits as thoroughly as we could, given that I did not know any labs that would do the particular tests I thought might be helpful. We just have to hope your doctor is willing to learn as she goes.

    * You might also want to consider getting a Hereditary Thrombosis Risk Panel from HEMEX Labs (in Arizona. They're the ones that do the ISAC Panel.) This tests for seversl of the more common genetic problems (though it certainly doesn't cover them all). A better understanding of what might have put you at risk might help you and your doctor better understand the risks that might be involved with estorgen therapy. You might also want to consider a skin patch, as we suspect that avoiding the first-pass effect that you get when you take medications by mouth might be what most increases your risk for clots. It's a lot to think about. Be grateful that you have a doctor who is willing to review the options with you. Best wishes to you both, and let me know if I can be of any further assistance.