Tested positive on antibodies I don't understand

[lemonworld]

Anticardiolipin IGM and beta2-glycoprotein IGM

Tested three years appart, positive both times.

My doctor said they weren't very high above the normal range, though she said she didn't know anything about it, and couldnt find much info about it other than: higher risk for miscarriage and blood cloths, and not to use hormonal birth control.

Does anyone else have these?
I've read that people with antiphospholipid syndrome can have fatigue as well. How do I know if that's not what I have instead of ME?
Since my doctor can't tell me anything, is there some kind of specialist I can see about this?
(I also wonder if these antibodies would be a problem if I were to try rituximab sometime. I were supposed to be in the study, but they told me I couldn't because I tested positive on those.)

(Sorry for asking but I'm so tired of being alone in all of this )

 

[Shoshana]

@lemonworld

I wish I knew any answer for you, but I do not. All I know is that you are not alone.
It is so very confusing and worrisome, that we don't know where to find the medical info and help , that we need and deserve.

 

[Gingergrrl]

I've read that people with antiphospholipid syndrome

@lemonworld Were you officially diagnosed with anti-phospholipid syndrome?

Since my doctor can't tell me anything, is there some kind of specialist I can see about this?

I would assume that a hematologist would be the best doctor to see for any blood clotting disorders?

(I also wonder if these antibodies would be a problem if I were to try rituximab sometime. I were supposed to be in the study, but they told me I couldn't because I tested positive on those.)

Do you mean that you would have been in the Fluge & Mella study in Norway?! Did they rule out people with auto-antibodies? I know they had people in the study with the Cell Trend auto-antibodies as well as thyroid auto-antibodies (all of which I have) but I was not sure about the others.

I tested negative on the anti-phospholipid, or Hughes Disease, panel prior to starting IVIG. I know that blood clots can be an issue with IVIG b/c it is such a thick substance but I am not sure how they would relate to Rituximab?

 

[Learner1]

The game some of the expert ME/CFS doctors seem to be playing with us is to collect up a good picture of how much autoimmunity we have. Many of us have antibodies to odd things, and they're not all the same.

Do you have any other autoimmune conditions? Hashimoto's, celiac, RA, Sjogrens, etc.?

My doctor told me that if you have one autoimmune issue, its highly likely you have others, and that many of is have a genetic susceptibility to collecting them. And that infections, like EBV, can stress out imnybe systems to the point they start creating these antibodies.

There's the obvious question of the impact of your specific antibodies. I don't know enough about yours to tell you the impact and what you can do. Mine make me tend toward high BP, where most folks around here have low BP, so I'm on a blood pressure med while others are trying to raise their BP.

Beyond treating them, the most advanced doctors are looking at how to get rid of them. Some of us are on high autoimmune doses of IVIG, immunoglobulins, while others are trying monoclonal antibody treatments like Rituximab or even hematopoietic stem cell transplants.

Do your research and find out what's right for you and keep searching til you find a doctor who understands and can help you.

Best wishes...

 

[lemonworld]

@Gingergrrl

No, I haven't been diagnosed with anti-phospholipid syndrome. I was just told I had those antibodies, and my doctor said she didn't know anymore about it. So I've just been reading about it online and found the term anti-phospholipid syndrome, and I'm not saying I have it, I'm just wondering if it could be something worth looking more into.

Do you mean that you would have been in the Fluge & Mella study in Norway?! Did they rule out people with auto-antibodies? I know they had people in the study with the Cell Trend auto-antibodies as well as thyroid auto-antibodies (all of which I have) but I was not sure about the others.

I were supposed to be in the study. I had to do a lot of test before hand, and they told me because of those antibodies I couldn't partisipate.

 

[lemonworld]

And that infections, like EBV, can stress out imnybe systems to the point they start creating these antibodies.

My illness started with an EBV infection I think

Do your research and find out what's right for you and keep searching til you find a doctor who understands and can help you.

Thank you for the encouragment!

 

[Learner1]

You are quite welcome! Good luck!

 

[Gingergrrl]

So I've just been reading about it online and found the term anti-phospholipid syndrome, and I'm not saying I have it, I'm just wondering if it could be something worth looking more into.

@lemonworld I definitely think it is worth looking into further if you have the opportunity.

I were supposed to be in the study. I had to do a lot of test before hand, and they told me because of those antibodies I couldn't partisipate.

That is so interesting. Do you know what other auto-antibodies Fluge & Mella tested for (or pre-screened) as part of the study? I know some of the people in the study were positive for Hashimoto's Abs and for the Cell Trend Abs so I am wondering which ones led to people being excluded (like you were with the anti-phospholipid Abs)?

 

[lemonworld]

@Gingergrrl No, I don't know. But my doctor might have a copy of the tests they took, so I can ask. Though out of the tests they took, I don't know which would rule out people and which wouldn't, so maybe there's no use.

I wonder why we were excluded. If they think we have something else, or if it's just to have a homogeneous group in the study or something.

 

[Gingergrrl]

@Gingergrrl No, I don't know. But my doctor might have a copy of the tests they took, so I can ask.

If this is a doctor that you will be seeing again anyway, I think it would be very interesting for you to get a copy of your tests (both for your own future reference and to know which auto-antibodies might have excluded you from the study).

I wonder why we were excluded. If they think we have something else, or if it's just to have a homogeneous group in the study or something.

I am very curious, too, which auto-antibodies excluded someone from the Rituximab study and why? Is it b/c they felt this meant you had a different illness or b/c they wanted a homogeneous group going into the study. Either way, it is very interesting!