Diagnosed with APS in 1998/99, on cou... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,356 members10,544 posts

Diagnosed with APS in 1998/99, on coumadin since 1996

craftymom77 profile image
3 Replies

I got a blood clot when I was 19. Doctors didn't know why, and put me on coumadin for 3 months. The symptoms improved, but then after the 3 months of treatment ended, I experienced burning in my fingers and toes. I took an asprin a day and the symptoms resolved. I stopped taking it thinking I didn't need the asprin any more. I developed another clot, this time in my ankle. I chose bed rest at home, but within a week it became a Pulmonary Embolism. Life long coumadin.

Fast forward 22 years, I have had 3 successful pregnancies but lost 3 babies including one at 24 weeks due to HELP syndrome. I was on Lovenox for 2 of the 3 and Heprin for the other.

I am 41 years old now and eat clean (no dairy, gluten or processed foods). Pretty much Paleo eating, but my antibodies have never come down.

I just had an amalgam filling removed a month ago, which I had since 1994.

I was hoping to be able to get my antibodies down and get off of coumadin someday. But after reading about many of the members' experiences here, I doubt that will happen.

I am in the Houston area and would love to have a good but more natural doctor recommendation; someone who can help me manage my care.

Written by
craftymom77 profile image
craftymom77
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Wittycjt profile image
Wittycjt

Check my posts, i have listed some docs fromTexas from others there. Let us know. Good luck,Cindy

MaryF profile image
MaryFAdministrator

Hi and welcome, thanks for writing up your history, lots on here have had similar. On this forum, regarding medical professionals it can be about localised knowledge and Cindy has some suggestions for you. Do make sure your thyroid is checked plus your levels of vitamin D, B12, folate and ferritin as if these are low it will make you feel worse, plus can affect your antibodies with regard to low vitamin D: ncbi.nlm.nih.gov/pmc/articl...

MaryF

GinaD profile image
GinaD

I am also a clean foodie type. Take solace that coumadin nutritional guidelines can be annoying but unlike many meds, there are few side effects. High calcium levels can aggravate arthritis -- and thats it. Nothing else. Im sure you know, but just in case- adjust your coumadin doseage to fit your healthy diet, not vice versa!

You may also like...

Newly diagnosed with APS

and starving. My doctor told me no vitamin K no dairy no grain. I don’t know what to eat. Vitamin...

Recently diagnosed with Primary APS

did have a few early miscarriages in the first 2 months of my pregnancies.  Almost miscarried my...

APS positive but won’t diagnose

and I’m currently 13 weeks pregnant and no blood clots). I’m taking a baby aspirin daily and my...

Just diagnosed APS, Already have MS, Need support and advice please

I'm now 37, I had an arterial clot in my leg, almost a full amputation. I have since had 3 more...

Just diagnosed with APS

with my vision and headaches. The stroke made the doctors here look at my medical history, going...