SCLERODERMA levels?

[JustDiagnosedChris]

I had a flag shown on the test for Antiscleroderma-70 Antibodies

The result was 2.0

What does this mean?

Nothing else showed up, and Lyme was negative?

[Lynne G.SD]

Hi Chris;
I have had SD so long that numbers don’t mean anything.This is newer stuff.The are only 4 good labs that use the same kind of testing in the U.S Clongen,Fry,Tarci and Igenex.If your test was done by an other it might be useless.Maz will know for sure if you mention the name.

[Anonymous]

@JustDiagnosedChris wrote:

I had a flag shown on the test for Antiscleroderma-70 Antibodies

The result was 2.0

What does this mean?

Nothing else showed up, and Lyme was negative?

Hi Chris,

Many people have anti-scl-70 antibodies and no sign of SD while other have SD without the antibodies. Unless you have clinical signs of the disease, your 2.0 is only a number. It’s something to watch and consider but many healthy people walk around with anti-scl-70 antibodies and never develop SD.

I didn’t start out with clear signs of SD, my first diagnosis was lupus in April/May 2013. Last June, my labs came back with a low positive anti-scl-70, 1.1, and I did go on to develop SD skin issues. At that time my ANA was negative. I had dark, thick patches develop on my face, neck, chest, forearms, fingers, and knees with skin tightening of the calves, feet, forearms and fingers. This all happened within weeks. However, progression stopped by August, a few weeks after starting LDN. This includes the progression of some systemic lupus issues. I tested positive for Lyme through Igenex in August. Since then, everything was in a holding pattern with occasional flares that were manageable.

In January 2014 my labs came back with a positive ANA and the ant-scl-70 was 5.4, which my dermatologist – who saw hundreds of SD patients at Mt Sinai Hosptial in NYC – considered high. He said I was the first SD patient he’d seen with those numbers who didn’t have more obvious signs of the disease. I started AP in April and, since then, my face is almost back to normal (about 90% better) as is the skin on the rest of my body. I had blood drawn yesterday so I won’t know the current ANA and anti-scl-70 numbers until next week. But the numbers don’t matter to me. Most of my GI issues have improved, my skin issues are almost completely resolved and I feel almost as good as I did before I became ill. I still have some vascular and joint issues as well as UV photosensitivity thanks to the Lyme/lupus but I expect them to resolve with AP.

A year ago, I was exactly where you are today, very frightened and expecting the worst. Well, the worst hasn’t happened and it’s never going to happen. Follow the advice you receive here and you’ll be fine.

All the best,
Kelly

[JustDiagnosedChris]

Thank you!

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