NEED DOCTOR in Southern California

[ehc918]

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

[Lure2]

I am very glad that you are looking for someone who is an Expert on our illness!

I hope you will get some answers and I want to wish you Good Luck!

Kerstin in Stockholm

[zzcat]

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.

Good luck!

[ehc918 in reply to zzcat]

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.

[zzcat in reply to ehc918]

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?

[jetjetjet]

where do you live in the states ?

[Aktop]

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.

[Lure2 in reply to Aktop]

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?

Best wishes from Kerstin in Stockholm

[Aktop in reply to Lure2]

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.

[Karen56 in reply to Aktop]

Yes. My Immunologist said that Epstein Barr might have been responsible. I have no idea when I had Mono. But the virus was still high in blood tests.

[ehc918 in reply to Karen56]

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.

[Aktop in reply to ehc918]

I am going to get retested in near future,

[Aktop in reply to Karen56]

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.

[ehc918 in reply to Aktop]

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.

[Hughes-Comrade in reply to Aktop]

Yes, Epstein Barr .

[Hidden in reply to Aktop]

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.

[GinaD]

I received the shingles shot last year. No side effects, no issues.

again – where do you live? I see a good APS doctor in Northern Kentucky. You may also want to check APLS action for recommendations.