Tranquility1

I should mention, I was told the below were normal.

Hexagonal Phospholipid Neutral0sec

Platelet Neutralization0.0sec

Anticardiolipin Ab, Igg<10

Anticardiolipin Ab, Igm<10

Anticardiolipin Ab, Iga<10

Beta-2 Glycoprotein I, Igg<10

Beta-2 Glycoprotein I, Igm<10

Beta-2 Glycoprotein I, Iga<10

AnnNY

The antibody tests that were in the lower box are mostly what is the recommended tests for APS in the Hughes Charity website. I had those tested as well, except for the top 2. My anticardiolipin antibodies even though they were below ten were given number values, so my Anticardiolipin IGG antibody was 8 (Done 2x 13 years apart and the same value). When I have seen these <x values they often seem to mean 9.x, but it is hard to know because it could be anything under 10 theoretically depending on the lab. The Hughes website for instance says Anticardiolipn Igg has a low positive is 2 to 20. I don't know if this a laboratory difference or if it is because in the US they just don't consider a low positive to be that low.

What did they tell you about the labs in your top box? I've seen Dvrrt screen, but I don't precisely know what it means. The other antibodies seem more obscure. I've never seen them done on myself. Were you told you were negative for APS or positive? Will they treat you will anti-coagulants? Usually the lab marks which values are high or low according to their laboratory.

You might still be considered seronegative, but they don't acknowledge that much in the states. But you know, just a patient who seems to have neurological symptoms that respond to heperin and aspirin and looking for an answer.

Manofmendip

Hello Tranquility 1

I'm sorry but we are not medical professionals on here and we cannot interpret your test results, you must discuss them with your Dr. Why has your Dr not gone through the results with you?

Dave

Tranquility1

Hi Dave!

My internist ordered the tests, but is unfamiliar with antiphospholipid syndrome and has asked me to see a specialist. My appointment isn't until mid-September. In the mean time I feel awful and have crazy fatigue. I'm going to have to find another doctor who knows Hughes Syndrome and believes in seronegative APS.

Thanks!

Janet

AnnNY

Were all the tests considered in the normal range by the laboratory? Or did you see that?

Tranquility1

Thanks everyone! Yes, it looks like the numbers put me in seronegative territory. The thought of having to climb that mountain is depressing at the moment. When there is no energy for anything, finding extra energy for the littlest things takes away from what else I can do. I'm sure meditating will put it in a better frame of mind.

Knowing my results, I don't see the need to wait for an appointment with a doctor in September who doesn't believe in Seronegative APS to begin with. I may or may not have APS, but a doctor that doesn't believe in Seronegative APS is not going to leave that possibility open. Therefore, the hunt is on for a doctor in my region who believes seronegative APS can exist. Then that doctor can then decide if I fit or not.

The best study I have seen on Seronegative APS (SNAPS) was published in March 2014 in the Journal of Immunology Research. It's titled "The Mosaic of “Seronegative” Antiphospholipid Syndrome". I am sure many on this site are familiar with the study (but it's new to me).

My summary of the article is that patients who have symptoms of APS, but who test negative for the antibodies should continue testing for the antibodies using additional various testing techniques. These researchers found a good portion of SNAPS patients to be positive using various new testing techniques.

Here are a few interesting snip-its from the article:

"Three possible explanations for the existence of such “seronegative” cases have been proposed: either the diagnosis is wrong, or that previously positive aPL tests have become negative, or, as seems most likely, the current range of tests is inadequate."

So above the scientists are stating that it's most likely that the current range of tests is inadequate for those who are diagnosed as seronegative APS.

"Results revealed that 13/24 (54.2%) SN-APS sera were positive for aCL (9 of whom were also positive for lysobisphosphatidic acid) by TLC immunostaining, 11/24 (45.8%) for anti-vimentin/cardiolipin antibodies, 3/24 (12.5%) for anti-prothrombin antibodies, and 1/24 (4.2%) for anti-annexin V antibodies. These findings suggest that in sera from patients with SN-APS, antibodies may be detected using “new” antigenic targets (mainly vimentin/cardiolipin) or methodological approaches different from traditional techniques (mainly TLC immunostaining). Thus, SN-APS represents a mosaic, in which antibodies against different antigenic targets may be detected".

...

"In the clinical practice it is possible to find patients with clinical signs suggestive of APS, who are persistently negative for the routinely used assays to detect aCL, aβ2-GPI and LA. For these cases the term of SN-APS has been proposed [26–30]. Similarly to classical APS, SN-APS can have an accelerated progression, resulting in multiorgan failure, ending to catastrophic APS [31]. Thus, since clinical features of SN-APS appear to be similar to APS, the most convincing explanation for the existence of such “seronegative” patients may be that the current range of tests is inadequate. It may depend either on limits of the traditional technical approaches or on the existence of different antigenic targets."

...

"Taken together, these findings indicate that the execution of all these tests (TLC immunostaining, antivimentin/CL, antiprothrombin, and antiannexin V) can be very useful for identification of autoantibodies in so-called SN-APS patients. We can assert that, by using these approaches, it is possible to detect autoantibodies in the majority of the patients (79.2%). We suggest using all these different diagnostic approaches in the most reliable sequence, starting with TLC immunostaining, then antivimentin/CL ELISA, and eventually anticofactors ELISA to reveal the hidden reactivity of the conventional aPL detection (Figure 1). The combination of the first two diagnostic tests, TLC immunostaining and anti-vimentin/CL ELISA, detects aPL in about two-thirds of tested samples."

...

"However, although these approaches ameliorate our diagnostical possibilities, we are still unable to detect autoantibodies in a percentage of patients with a clinical picture suggestive of SN-APS. Other unidentified cofactors may be involved in sera reactivity. Further studies will shed light on “new” antigenic specificities in SN-APS as well as on the real importance of nonclassical antibodies found in SN-APS."

...

"These findings suggest that in sera from patients with SN-APS, antibodies may be detected using “new” antigenic targets (mainly vimentin/cardiolipin) or methodological approaches different from traditional techniques (mainly TLC immunostaining). Thus, SN-APS represents a mosaic, in which antibodies against different antigenic targets may be detected." hindawi.com/journals/jir/20...

Has anyone here tested using the TLC procedure or various other procedures?

Part of the mountain is finding a doctor who is familiar with the above and is willing to do these tests if deemed appropriate.

Tranquility1

LabCorp is a big testing company in the U.S. The test my doc ordered (along with other tests) was called the antiphospholipid antibody comprehensive test. Link -- labcorp.com/wps/portal/!ut/...

This test includes the tests for antiphosphatidylserine IgG and antiphosphatidylserine IgM.

More and more research is coming out about the association of antiphosphatidylserine and APS. Orgentec summarizes it by stating: "For the diagnosis of APS, some authors hold the detection of anti-phospahtidyl serine to be more meaningful than the detection of anti-cardiolipin." Link -- orgentec.com/index.php/en/p...

100 years from now, scientists will know all the antibodies, blood tests, and genetic links. However, we are living in a time where the field is still new and what is known is in it's infancy.

Here are a few studies on Antiphosphatidylserine and ASP.

Antiphosphatidylserine/prothrombin antibodies in primary antiphospholipid syndrome. Link --ncbi.nlm.nih.gov/pubmed/226...

Antiphosphatidylserine/prothrombin antibodies (aPS/PT) as potential markers of antiphospholipid syndrome. Link -- ncbi.nlm.nih.gov/pubmed/223...

Now I'm going to meditate on "I am perfect and at peace living in a time where testing is in it's infancy for APS". I'm going back to being tranquil.

Lure2

Hello, The first question is to get a diagnose (with our without the antibodies). The second is to find a doctor that knows APS and understands that we can be zero-negative (sometimes with or sometimes also without antibodies)-

You must now try (as you say yourself) to find that doctor that knows APS so well that he is willing to put you on an anticoagulating drug that makes you feel much much better. . Perhaps first on Plaquenil and then Pradaxa or Warfarin. I only quess this as I amlLearning from this site and from the books of APS.

What do you say about this? I am sure you will succeed because I think you are a "fighting spirit" and you may know that I personally think you have APS.

Bless you and my best wishes from Kerstin in Stockholm

Tranquility1 in reply to Lure2

Thank you for all your well wishes. I truly feel supported by this community. A little piece of feeling known when society and friends really can't possibly understand crippling fatigue and neurological symptoms without ever experiencing them. I'm sorry that all of you have had your own share of health difficulties, but I am really glad you are all here to support each other and to be supported as needed.

I am going to read all the posts on Plaquenil and Pradaxa or Warfarin so that if the doctor mentions them I'll understand various positions. Knowledge is powerful.

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