I have Hughes Syndrome and have been working with my primary who has been very, very accommodating with my treatment, however she feels that my treatment needs surpass her comfort level.
I was diagnosed with APS in late 2014 and initially responded to aspirin, but my symptoms relapsed soon after starting.
I have NOT had a clotting incident, and in the states it is VERY difficult to find a physician who will actually treat this.
Is there anyone here who sees a Hughes literate physician?
thanks,
ehc
Written by
ehc918
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Hi there. You have one of the best doctors in the country there in CA. Dr Daniel J. Wallace. Look him up on Amazon, he has written many books. I have met him and he is a kind and caring man.
If he is not close enough to you at least he would be worth seeing, getting on track with treatment then recommending a doctor closer to you and getting a copy of what that Doctor does. You always get better care if a doctor feels they are being watched by an expert.
I'm in Florida or would be with Dr Wallace myself.
Just had an appointment with Dr Wallace who does NOT think I have APS because I have low positive test results and I've never had a clotting event. Terrible disappointment.
Wow, I'm so sorry you had such a bad experience. We've all had them and it's miserable and demeaning.
I suppose on the other hand, it could be positive if he is correct and you Don't have it. But that does not answer the question of why you are low positive. Did he give you and answer to that or what it could be?
Has anyone else who was diagnosed with Antiphospholipid syndrome had a virus like Shingles, Epstein Barr, or Strepcococous? It doesn't have to be recent either. In my case I had Shingles a month prior.
Very interesting. There could be a lot of different causes to APS. Did you have Shingles a month before you got a diagnose of APS? I have APS but I did not have Shingles. So you believe that was your "trigger" to APS?
Yes, I was informed by reading a book that has changed my life in thinking this APS , I will have to live with forever. The book is Medical Medium by Anthony Williams. He did not address blood clots in book but all autoimmunune is caused by viruses like Epstein Barr and Shingles, etc. I had other symptoms caused by shingles in book, collitis, anemia, a frozen shoulder. Recently spoke with someone who was using his protocols, as which I am, and am symptom free. Elimating foods that feed viruses, dairy eggs, wheat, processed foods and sugar, corn, pork andcanola oil. I feel with eating mostly fruits and vegetables , a little meat and nuts and seeds I am keeping it from flaring, maybe killing virus. Anyway it's a very interesting book and he has a radio show on Hayhouse Monday at 2 or listen to shows on SoundCloud. You have to be open minded though.
You have 2 types of immunity markers, IgG and IgM. IgG tests for exposure in your past, but doesn't mean you actively have the infection or antibodies present. IgM is a current marker of infection, indicating recent exposure and antibody formation.
I have been IgM positive on every single test I've taken since 2006. I'm also always IgG positive too.
One theory is that because of the sediment of fibrin in our abnormal blood, our bodies can't push the virus into remission. A combination of blood thinners and antivirals and systematically needed to eradicate this.
Read Medical Medium by Anthony Williams, it tells you that Epstein Barr is responsible for lots of autommune , and how to heal. It's helped me and want to spread the word.
YES!!!! There is actually a lot of evidence in a "viral induced antiphospholipid syndrome" and that's what my doctor and I have been trying to deal with. In 2006 when I started feeling super crappy I tested active positive to CMV, but nobody thought a thing of it really. Viruses usually run their courses. In 2013 my dr decided to run all viral tests again and I was STILL positive. Did several rounds of Valcyte, but I have continued to test active positive to CMV until this day. From my research, the "herpesvirus" family, including HHV6, EBV, and CMV are the viruses most associated with this antiphospholipid syndrome.
Uhhh, yeah. My PCP actually commented that it was "interesting" that I'd tested positive for mononucleosis, and asked me when I had it. When I said never that I'd known of, he shrugged it off. No direct correlation made, but to be honest, I don't think my PCP knows much about APS.
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Do I need ongoing consultant support?
Haematologist still says my migraines have nothing to do with APS/Hughes
I am moving to the Woodlands in Texas anybody know a Doctor Who is good with Hughes syndrome
California??
