Sticky Blood-Hughes Syndrome Support
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Low positive antibodies so doctor won't treat

Hi, everyone. How many of you have found that, if you have low positive antibodies, you have trouble finding doctors to treat you? I'm running into that. The CCF doctor said my antibodies are too low to be treated. He didn't consider that I have the antibodies, period, along with a history of blood clots (he said that since they weren't unprovoked, they didn't count); I have livedo regicularis; migraines; and so many other symptoms of the syndrome, plus a brother who had three heart attacks before aged 50, another brother who has had several TIA's and has seizures; a son who had seizures and now has severe chest pain with exercise; a cousin with lupus; a dad who died of a heart attack at age 66 while on coumidin. He said my, and my family's history sure supports an autoimmune condition like APS, so he understands why I have the low level of antibodies that I do, but he doesn't believe I have APS and treating for it would be hurtful to me.

What do you all think? I contacted the Foundation, and she thinks this doctor is incorrect, so she called another top APS doctor in the US, and she said she doesn't care how low my antibodies are or why I got blood clots, I have the antibodies, period, and I got blood clots, period, and with my family's history, I need to be treated.

Ugh. Did all of you have such a hard time getting diagnosed? I have a pathologist saying I have this, a top doctor in Maine saying I do, but three docs at CCF saying I don't, but the Foundation president saying I do. I don't know what to think.

I do have my two brothers and son getting tested for it.

Thanks, everyone.


9 Replies

hi linda -a assume your in maine? im in N.H.- i see a doctor in lebanon N H at dartmouth hitchcock - he also works in mass genneral- hes the best i have found - i had aps since aug 31 of 09 -still i was having trouble - i saw him in nov 2011 after running 23 blood tests he found the problems and is still going forward with me . if you are interested it would be worth th trip believe me - get back to me--------------------------------------- jet


This is a good idea, to locate somebody in your area, using the correct mecial practitioner with working knowledge - I hope your situation improves, do keep us posted. Mary F


Linda, I was having strokes (or TIAs or mini strokes -- the difference between a TIA and a mini stroke is in the eyes of the practitioner.) It was scary and hard to live life never knowing when one side of my body would become paralyzed (and a tad inconvenient don't ya know?) Some old high school friends who had become doctors (in other states) got together to discuss my bizarre symptoms and, basically, diagnosed me over the phone. Local doctors were split on the issue of "is it or is it not APLS," and my (then) GP had over-ruled the specialists. My high school buddies got me an apt. in Cinn, the diagnosis was made, I was put on warfarin, and I've lived happily ever after (past 10 years) until this current hip/leg/back pain started a year ago.

But yes, some of us have had a hard time on that road to a diagnosis.

Good luck, and I would second jet's suggestion that you go out of state. It worked for me.

And re antibodies: A classic diagnosis requires a couple of positives separated by a period of time. But in your case, you sure are marking off a lot of boxes in that check list. Remember you can always self-medicate with a baby aspirin a day.



I am wondering who the doctor is in Lebanon, NH at Dartmouth Hitchcock and also MA General.

I was diagnosed with APS after bloodwork positive for antibodies last year. A year later, I am showing no antibodies, but my symptoms continue.

In the arena of self-help:

I have several members of my immediate family with autoimmune conditions and one of our doctors suggests no gluten, no dairy and no soy for anyone with autoimmune disease. This is striving to get at the root of the autoimmune state. Good luck to you.


Hi, everyone. I'm sorry, I'm not from Maine. That's just where the doctor the Foundation president called, is from. She trusted this doctor's opinion on my case and wanted her opinion, so she called her. I'm from Northwest Ohio.

I take in no gluten, dairy, or soy and haven't for years. Can't tolerate most foods so have lived on a "formula" for years.

I would like to take an aspirin a day (thank goodness my two brothers already do), but I go anaphylactic with it.

Jet: I know I wouldn't be able to make a trip to NH. Would this doctor work with me long-distance, do you think?

Gina, who did you see in Cincinnati? I'm not too far from there, maybe three hours.

Thanks, everyone.



I am glad you are getting some support, things will get better with ideas flowing in! Mary F



I know how very frustrating this can be. As I believe Gina said, a correct diagnosis can take time. I went atleast 10 years without a diagnosis myself. For many with varying symptoms any disease can be difficult to diagnose. I think the hardest part for us is the "not knowing" why we feel this way and what it actually is.

I think doctors lean towards the safe side in diagnosing any issue because as the one doctor told you a treatment could be harmful to you. Some doctors are more proactive than others too.

Did you speak to Dr.McCrae? You said that you left a message with his he the one who told you this or the Dr. Bartholomew? I see McCrae Monday morning.

Also...I think we all need to be careful and remember that those we reach out to for support are not medical professionals. We all have our opinions.

We all have each others best interest at heart. We all have our experiences and can share what has occurred and where and how we got through it. Support is SO important.

There is not one doctor who can diagnose anyone over the phone... there are just so many issues that go into a diagnosis. I recently wrote a letter to a physician asking for direction, advise, etc about APS. That in itself is a stretch as they will not have all of my records, lab tests, etc.

I hope the best for you. Let me know if you would about the docs at CCF.

Take care Linda,




I have never had a positive antibody test and yet Prof Hughes diagnosed me with APS! There are lots of factors that have to be taken into consideration besides antibody tests and I really think that physicians that rely solely on blood results do a hugh disservice to their patients.

I really hope you can get the decision you need in order that you can get the care and treatment you require.

Good Luck.


I did not talk with Dr. McCrae face to face. I sent him a very descriptive email containing my symptoms and he had my lab results at his fingertips since I had the tests done at CCF and he's a CCF doctor. He was not impressed with either my history or my lab results. I was told that he is purely textbook and stands by the numbers over history. I need someone who sees both.

Thanks. Linda


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