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Originally Posted by heb1212
DejaVu and others... thanks for this information. I've been a member of this site for a few years now and have told my story in bits and pieces throughout that time. This thread is of particular interest to me and quite opportune. This past April, I tested mildly positive for anticardiolopin antibodies but five times normal for the beta 2 glycoprotein antibodies (antibodies associated with antiphospholipid syndrome). The test was repeated last week, three months after the initial test per the guidelines, and I'm still significantly positive for the beta 2. It leaves me with meeting the laboratory diagnostic criteria but not the clinical criteria, which requires a thrombotic event. Hmm.. waiting for a stroke or pulmonary embolism. I've had body-wide burning neuropathy for four years, which the doctors tell me is a central nervous system "sensitization" likely caused by the severe viral infection I had. So far, there hasn't been a decision to treat with anticoagulant therapy given the lack of a clinical event. My rheumatologist said the antibodies can be as a result of a chronic viral infection and not a genuine case of aPL. I'm an enigma. Thanks again!
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I'm a bit confused as you said you tested 5 times normal/negative...yet I guess now you are positive. Do I have that right? So just the one test positive (and mild + cardiolipin)??
Your rheumy is right that there are other reasons for positive labs. But no one like to wait for a stroke. This would be the case in which aspirin is considered if the next labs (both aCL and Beta 2) are positive. It's a tough call to start adding a risky blood thinner like warfarin when there is no clinical symptom at all.
As for your body wide neuropathy, I would think the virus may have triggered an autoimmune process and thus neuropathy. Have you been checked for various AI diseases??