covid testing for Hughes patients

[GinaD]

Any data of covid testing on diagnosed APS patients? Are some tests registering false positives? Are some covid tests more accurate for us thsn others?

[MaryF Administrator]

Watch this space, I am not clear on this yet, hopefully if anybody sees anything from around the UK or the world, they will put it on here. Hope you are well. MaryF

[HollyHeski Administrator]

What a brill question, a lot of research going on but no answers yet?

[KellyInTexas Administrator]

I haven’t heard.

I would think the virus itself would need to flag positive in the nasal swab .

Our son became unwell with fevers and Covid like mild symptoms( no sore throat/ no cough) only high fevers.

His doctor had him tested.

Our son has APS. ( 2 Antiphospholipid antibodies positive, no clot- no thinners.)

He was negative, thank goodness!

He was presumptive positive until swab came back from Atlanta’s CDC

Only if blood were run and...

1. Patient were on thinners

Or

2. Patient were LA positive, but no clot, so untreated, aspirin only- would clotting time in VITRO ( in tube) be prolonged.

This could be explained to the doctor.

Then the poor doctor would not know if it was the LA antibody, or perhaps the Aspirin the patient takes.

The nasal swab would need to tell the story of positive or not for Covid 19.

( however... can be false negatives with those if the administrator of swab doesn’t swab high enough or aggressively enough. I waited one day extra - with doctor’s blessing and caution if he worsened to come in immediately- to have my son swabbed so the virus could replicate enough to get a high enough count to be easily detected on nasal swab.)

[Cinn987]

Been wondering as it seems our antibodies are found in positive covid patients..

[pinkyandperky]

I had to have a covid test so I could undergo a minor hospital procedure. It was negative but i am only APS positive on the anticardiolipin antibodies.

[GinaD]

Please someone correct me if I’m wrong! But my understanding is that the cardiolipin antibodies are similar to the covid antibodies. So, good to know!

[veganworld in reply to GinaD]

I have heard this also. I would like to think that they would be able to extract cardiolipin antibodies if they became useful and transfuse into patients with Covid. They need to try everything. Maybe we will all turn out to be of use. That would be great.

Kaz

[GinaD]

That is a positive possible correlation. A possible negative one is the growing evidence of blood clots, in the heart , lungs and now ' covid toes.' -- could be our reactive antibodies just make things worse. So much about this disease and how our body reacts to it is unknown. The cytokine storms that kill so many patients is, sadly, caused by a lethal mistake our own immune systems are prone to make. Our human bodies have little genetic experience with how to deal with these invaders.

[jetjetjet]

I had just talked to my Supervising nurse yesterday and the antibody testing not working for us because of anti cardio and i am LA positive .They are keeping me away from it all as i am high risk with the A+ blood also INR testing pushed out to a week .

[gazaeee in reply to jetjetjet]

Hiya. Forgive me if I'm asking a silly question but are you saying that anyone LA positive won't show the covid antibodies? I had the covid antibody test and it came back negative?

[jetjetjet in reply to gazaeee]

Gina hit it right in the head !! Thanks Gina . I am what is considered a triple positive meaning i have all 3 Blood issues L.A. -- beta 2 --- and the Anti cardio . And I also am primary . Being a Male which puts me in the rarest categories .This triple also makes my INR'S very erratic as the warfarin Sulfate is my Anticoagulant and i test every three days { blood draw at Hosp. lab . The LA is one of the worst BAD GUYS to have . it is also one reason I can't finger test at home .

[gazaeee in reply to jetjetjet]

Yes I noticed that there seem to be very few men with APS but why is LA the worst of the bad guys?

[GinaD]

My understanding is that there are a variety of covid antibody tests and many of them will give us APSers a false positive or false negative. So --after I was possibly exposed last week, I went for the active virus test-- which was negative, but I might have been early in possible infection, so I am semi-isolating myself until Monday which will then be 2 weeks from possible infection.

[gazaeee in reply to GinaD]

That is interesting. I wonder why.

[GinaD]

Antibodies are grouped into what I would call " families," depending on what aspect of an invader the antibody will attack. The antibodies which cause APLS mistakenly attack the linings of our own capillaries. It certainly looks like those antibodies we have are in the same family as those a body may create to also attack covids. So, we may test positive when we actually have not been exposed to covid because the antibodies look so similar.