Testing positive and really scared

[BobbyPeru]

Hey everyone

I am a 42 year old male in NYC with no history of strokes, Lupus or any autoimmune issue. No weird symptoms.

A couple of weeks ago I did an extensive series of exams because I have slight malar edema (also known as festoons). I have had the edema for a few years and it was bothering me.

The doctor who ordered the blood work thought we should dig deeper and see what might be causing the edema.

Everything was looked squeaky clean - except for anticardiolipin antibodies IGM and glycoprotein antibodies IGM. The cardiolipin result was 98.3 MPL-U/mL and the glycoprotein was 64 U/mL. I don't know if these are "through the roof" or what.

I tested negative for the IGG, IGA and all Lupus-related exams.

I am obviously very nervous and trying not to let my negative thoughts overtake me as I reach out to a couple rheumatologists and try to shed light on what this might mean.

I was very sick 1 month prior to the blood work with a fever of 39 Celsius and a lingering cough/sinusitis. In retrospect I wonder if it could have been Covid or just a nasty bug.

Could this have activated these antibodies? Trying to hold onto some hope.

[lupus-support1 Administrator]

Welcome!

I’m sorry to read your concerns. Before replying to you. If your name is your real name, it would be better, for privacy, to use a different name.

I’m sorry to write that the only person who can answer your question is your doctors ie your rheumatologists and sometimes this can take a while because blood tests can change over time. For example, you wrote that you had been quite ill: your temperature was very high. Blood tests can and do change over time.

I am more concerned about your last point about giving you “some hope” as if you are very afraid. My advice is to go and speak to your doctor, if not your rheumatologist, your GP/primary care doctor so they can ease your mind.

With good wishes,

Ros

[BobbyPeru in reply to lupus-support1]

Thank you. Are you referring to “Bobby Peru”? It’s not my real name, no

[Star13]

Has the Doctor who ordered your blood work ordered a repeat of the anti-cardiolipin and glycoprotein tests again in 12 weeks time?

In order to get a positive diagnosis of any of the autoimmune diseases that have the three antibodies of the two you say you have tested positive to, you must test them twice 12 weeks apart to see if they are still positive. This is because of the very reason you mention that some infections or viruses can cause these antibodies to raise. You may remember during the pandemic that a lot of people with Covid were testing positive for Antiphospholipid syndrome but they didn’t actually have it. Their blood levels eventually returned to normal so if your Doctor has not already done so ask him to order the repeat tests in 12 weeks. The fact that you had no symptoms before is always a good sign. I hope you find the cause of your original complaint.

[BobbyPeru in reply to Star13]

Thanks Star. Yes the doctor ordered getting tested again in 12 weeks. I am just concerned because the numbers are very high. I don’t know if that would be the case with a recent infection

[Star13 in reply to BobbyPeru]

Really can't comment on that Im afraid. If your infection was covid who knows what it may have done as that was having all sorts of affects on people. Id try not to worry if I was you. Most people with autoimmune conditions have many symptoms which Im sure you would be aware of so even if you had antibodies and no symptoms, they may well not do anything anyway. Id just try and forget about it for the next few weeks and hope it was just a storm in a tea cup. After all had you not gone to check about your festoons you would never have known about it. I assume the Doctor has checked your Thyroid?

[BobbyPeru in reply to Star13]

Hi Star! Yes , all thyroid related exams were normal. Literally everything else was squeaky clean- just these two antibodies which obviously made me concerned.

Is 1 month long enough for igm antibodies to still be in the system (let alone at such high levels) if it was “just” a viral/covid or bacterial infection? Wouldn’t my other levels show infection too if that were the case?

[Star13 in reply to BobbyPeru]

Im afraid those are questions I just can't answer.

Dr Jason Knight who runs a APS Lab in Michigan and does a lot of research there, has a very good website. He also did a lot of research during Covid on the very subject of why people were getting APS antibodies. You might find it helpful to look through his website and read some of his studies. He also is quite amenable to answering the odd question or two via email. You can also join their email list and they will send you their latest newsletter each month.

medresearch.umich.edu/labs-...

[BobbyPeru in reply to Star13]

Thanks Star! I just reached out to his office.

Is an ANA test (to test for Lupus, for example) completely different to a Lupus Anticoagulant test?

[lupus-support1 Administrator in reply to BobbyPeru]

Even doctors get confused about the Lupus Anticoagulant test because it’s not a test for SLE ie systemic lupus erythematosus but a complicated test for Hughes Syndrome ie APS. There isn’t a blood test for SLE. If a doctor isn’t actively looking for SLE, it can be overlooked. SLE is called: a disease of 1,000 faces because it can mimic many diseases. It’s an autoimmune disease. Some patients with SLE can also have Hughes syndrome, named after Dr Graham RV Hughes discovered APS as a distinct phenomenon.