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Hughes / antiphospholipid syndrome

Discussion in 'General ME/CFS Discussion' started by stevesayshi, Apr 11, 2014.

  1. stevesayshi

    stevesayshi

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    Curious if anyone had been tested and/or treated for this condition. I am not yet sure if I have true PEM or just a really rapid and progressive onset of exercise intolerance and autonomic dysfunction common in ME/CFS. I believe the hypercoagulability / hyperviscosity hypothesis has never really taken off, but given my sed rate of 2, elevated fibrinogen, and physical proximity to Dr Berg's lab, I am going to check it out. Will report back.
    merylg likes this.
  2. Sidereal

    Sidereal

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    I have both autonomic dysfunction and antiphospholipid syndrome. A recent paper on the link between the two issues may interest you.

    http://lup.sagepub.com/content/early/2014/02/25/0961203314524468.abstract

    Ema, stevesayshi and merylg like this.
  3. stevesayshi

    stevesayshi

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    Wow thanks that all sounds very familiar. I am wondering if you have had any luck with treatments? After a brief phone interview the naturopath Dr Berg recommended jumped straight away to ozone therapy which I am not so sure about -- don't know if my body needs more oxidative stress right now.
  4. alex3619

    alex3619 Senior Member

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    Hmmm, this almost sounds like me. I don't have Raynauds, and I got my headaches under control a long time ago through diet, but I do have what sounds like livedo reticularis, which is a particular skin discoloration, particularly in the lower extremities. My feet are totally discoloured on the top, going up over the ankles, and no doc has ever been able to figure it out. I have moderate balance problems (as defined by the hospital) and definitely have memory issues. I will have to have this specifically investigated.
  5. Sidereal

    Sidereal

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    Nope, no luck from conventional treatments (aspirin, prednisone) but I do think it's worth getting a rheumatology consult nonetheless to see if you have this and/or other autoimmune diseases. Autonomic dysfunction is common in various autoimmune diseases. See this for instance:

    http://www.ncbi.nlm.nih.gov/m/pubmed/17432103/

    I already had a diagnosis of OI/POTS before seeing a rheumatologist. He said he didn't know what that was but that in any case it doesn't go with connective tissue diseases. LOL, if only they spent even 20 minutes a day reading abstracts from their professional journals they wouldn't sound so foolish. Mind you, this is Europe, medicine here is free but abysmal, light years behind latest research. Maybe there are more clued in rheumatologists in the States?

    Anything looks better than ME/CFS on the chart and will get you less abuse from MDs in the long run, even if the alternative diagnosis doesn't ultimately change your management (fixing leaky gut, pacing, supplements etc.)
  6. voner

    voner Senior Member

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  7. stevesayshi

    stevesayshi

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  8. amaru7

    amaru7 Senior Member

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    I also have tested Anti-Phospholipid Syndrome and got it. My internist didn't explain to me though, what it means
  9. Ema

    Ema Senior Member

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    I'm actually just getting ready to start Lovenox. It supposedly also kills babesia as well...
  10. stevesayshi

    stevesayshi

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    Amaru, it's potentially a serious condition. The links voner and Sidereal shared are very informative.

    Ema, please let me know how it goes.
  11. Mya Symons

    Mya Symons Mya Symons

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    I have been wanting to get tested for this for quite awhile, but can't get a doctor to do it. Can you tell me what the exact name of the test is. Please.

    These studies are why:

    http://journals.lww.com/bloodcoagul...igue_syndrome_and_or_fibromyalgia_as_a.6.aspx

    http://europepmc.org/abstract/MED/9392689/reload=0;jsessionid=B57bSNo6sQpdzU09HG0j.20

    http://link.springer.com/article/10.1007/BF01452251

    Just had to add this last one because it is so confusing. It seems more than one study has found both anti-serotonin antibodies (or precursor antibodies) and anti-phospholipids antibodies in people with FMS or ME or both. However, this one says they found anti-serotonin antibodies but they randomly decided there is no diagnositic relevance for no apparent reason??? They do this a lot with ME/CFIDS and FMS, don't they? We found this but it can't have any meaning--it's just CFS or Fibromyalgia!!:bang-head:
    http://www.jrheum.org/content/28/3/595.short
  12. Sidereal

    Sidereal

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    It's a blood test where they measure a few antibodies. You may have one or more of these in APS. They can also occur in other diseases.

    http://en.m.wikipedia.org/wiki/Antiphospholipid_syndrome

    Steve, no, I haven't tried heparin.
  13. Mya Symons

    Mya Symons Mya Symons

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    Thank you! They offer one of these tests (anti-cardiolipin) at walkinlab.com.
  14. Ema

    Ema Senior Member

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    I had the Esoterix panel for antiphospholipid syndrome...and it was totally negative. Phooey. That really would have tied together some symptoms for me.

    But I think I'm still going to get to do the heparin...I probably won't find out now until after my appt in May though because I didn't have the right form for the ISAC panel.
  15. stevesayshi

    stevesayshi

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    Thanks for the update. I hope you do get to try it.

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