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!

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??

Thanks for all your answers. I am so angry because I went to take this test by myself (I paid) just to rule out the possiblity of antiphospholipid syndrome, because stroke and cardio-vascular disease runs in our family.Unforunately my test was positive, low to moderate. I have to check once again. But now I am pregnant. I am very very scared of getting Heparin and bleeding to death. I did not have TIAs or stroke, I had migraines with aura (or are that just small tias, dont know). I have also a patent foramen ovale (a hole between two chambers of the heart). Are there any test that can predict if you will have bleeding after taking Heparin?

Am,if I will have negative results, is it possible that I had higher anticardiolipin because of some viral infections (I work in Kindergarden).

Good morning, En Bloc... thanks for your response. What I meant was the reference range for the beta 2 was 0-20 and mine was 115, so a significantly positive test the first time. The second time it had dropped to 75. And you're right... the thought is that the virus set something in motion. I am still testing positive for the parvo virus b19 dna almost five years later. It has entrenched itself in my blood cells. It's been documented to cause arthritis and possibly lupus, but so far extensive AI diseases are all negative except the aPL. I can't help but feel something's brewing because one can't feel this crappy for this long and in this much pain without something eventually showing up. thanks again!

Barbie... I guess anything is possible, but without a confirmed history of a viral infection it would be anyone's guess. As much as I'd like to take a pill to make this all go away, I realize after four years that that's simplistic. There are inherent risks to taking a blood thinner that my doctor and I are going to discuss in September. So sorry that you're struggling with all this.

Oh I got it now!! I thought it meant you had 5 tests...all being normal/negative. Then the positive test. Makes perfects since now!! LOL

I'd agree...something is brewing. Are they checking you out for autoimmune disorders?

I would suggest you see a hematologist if you are pregnant and have the (even just one) positive APS test. APS can be problematic during pregnancy and you should be followed carefully and maybe rechecked (the anticardiolipins) sooner than the 6 months.

There is not really a test to check for possible bleeding after heparin use. The INR level can be monitored with warfarin use, but this test is not effective for heparin. Again, you should follow-up with a hematologist now that you are pregnant.

Thanks, I will. I will mention it to my OB tomorrow. It can cause stroke or misscarriage or stillbirth, I know. But I am very scared of Heparin.