Deep Dive into Antiphospholipid Syndrome Diagnostics

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I was admitted to the hospital back in December '22 with a large DVT in my leg. I never had a clot before in my life (60 years). I exercise regularly, never smoked, don't take any meds, and have generally been in good health most of my life. Blood tests taken at the time of my clot showed negative for Lupus but mildly elevated levels of Anticardiolipin antibodies IgM (IgG normal) and Anti-beta-2-glycoprotein-I antibodies IgM (IgG also normal).

The tests were repeated and showed similar results 4 months later whereby the doctors declared I have "APS". However I am not convinced for several reasons:
1) All of these test were taken while on anticoagulants which I understand can skew, or even invalidate, the results
2) They discovered I had a UTI at the time of the clot and first tests - which was treated but not eradicated - and has since returned, possibly explaining the elevated IGM levels.
3) I've had 4 shots of the COVID vaccine followed by long covid that I was still recovering from up until ~October '22. I suspect the "spike proteins" are still floating around in my blood and they have been proven to cause clots.
4) In an effort to overcome the drain of long COVID I became addicted to diet energy drinks sweetened with Erythritol which a recent study found can create blood clots (at least in vitro).

So, while I very well may have APS so do many other people who are asymptomatic and NEVER get a clot. And otherwise healthy people can develop a DVT by simply sitting on an airplane for a long time. Therefore I am skeptical of the diagnosis. I do not believe my clot was caused by APS but, rather, the "perfect storm" of all those things going on with me at that time.

Nevertheless, they have me on Warfarin - a highly toxic, antiquated drug with a long list of dietary restrictions and warnings. I don't like it at all and feel it is unnecessarily poisoning my body. (For those of you unaware, Warfarin was fist developed for - and is still used as - RAT POISON!)

I would like a second opinion but my health care provider will not refer me to anyone else. I understand you cannot give out medical advice but your comments RE my situation would be greatly appreciated. I will pay cash to go "out of network" if there is a possibility this diagnosis may be wrong. Thank you.

raisingjakestudios
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Fwiw and with all due respect: Dr. Hughes, who Hughes Syndrome/APS was named after, said he thinks it makes no sense to have to test more than once. He also thinks you can dx APS without a thrombotic event. Those initial criteria were for classification, not for clinical use and they unnecessarily delay treatment.

mountainmolerat
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I was diagnosed and survived CAPS on the 28th of October 2023. I am still in the hospital since the 28th of October of 2023. Two months were spent in the ICU.

I pray that no one gets C.A.P.S.

eaglewolf
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Thank you, Dr. This was very informative video. I would be most interested in whether you know anything about the AVISE testing. Also, would you comment please about the correlation of your testing with a high titer ANA ?

Lifeisgood-td
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I wish there was an actual cure and diagnosis for aps, I hade dvt in my leg and it took me until I was coughing up blood to go to the hospital, I had pneumonia too . They said there was no direct cause for the aps and no cure just a blood thinner for the rest of my life .

bradosborne