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So is this it? Do I finally have the answer?

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Old 11-25-2007, 07:35 PM   #1
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Join Date: Sep 2007
Location: Upstate NY
Posts: 28
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So is this it? Do I finally have the answer?

Hi guys!
Well, my name says it all...selfdiagnosed!! Not really though
I did "self diagnose" Lyme disease this summer. Now that I have had over 3 months of antibiotics, I am no better. My rheumie says that any longer on the antibiotics would be considered quackery!

I thought I had found all of my answers in the Lyme diagnosis. But, henceforth, this isn't so.

Here is what happened when I started the Lyme treatment. I developed a blood clot in the arm where I was receiving the IV medications. Then they moved the IV to the other arm, and I developed a second clot! So, this led me to the hematologist who put me on coumadin until he can test me in April for the reasons why I clotted.

I then did my research and learned about Hughes syndrome. Also decided to take a trip down memory lane and see all the specialists again to see if anyone could pinpoint why I keep having the symptoms.

Neuro doc said not something they can find. So I headed to the Rheumie. There I got the battery of bloodwork - and here is what she found:

ANA "mildly" positive (not sure what that means)
Lupus Anticoagulant positive
aCL positive
Vitamin D "way too low" at 20 (doc said should be up over 32)
I can't remember any others...

Anyway, she started me on the plaquenil 1x per day for a few weeks and then I am to start taking it twice per day. She said it will take a while to feel better. How long?? Anyone know??

I didn't get a straight "you have lupus" or anything like that. So, I am wondering is that it? She mentioned that I do have the sjogrens (sp??) and to ask the eye doc to write me for Restasis drops.

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Old 11-25-2007, 07:37 PM   #2
Junior Member
Join Date: Sep 2007
Location: Upstate NY
Posts: 28
selfdiagnosed HB User
Re: So is this it? Do I finally have the answer?

Forgot to add:
I am female, 30 yrs old.
Symptoms began just after baby #1 was born, got better when I was preggo again with #2 and then got worse again after he was born! They were both 4 weeks premature after a lot of bedrest for preterm labor.

Last edited by selfdiagnosed; 11-25-2007 at 07:37 PM.

Old 11-25-2007, 08:14 PM   #3
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Re: So is this it? Do I finally have the answer?

Hi. From your rheumie's comment about Sjogren's, it *may* be that you tested positive for the anti-Ro autoantibody, which attacks cell cytoplasm. FYI, anti-Ro can be positive in lupus &/or in Sjogren's syndrome. (I was positive for it, too, but I have just lupus, not Sjogren's.) You could ask you dr., and also ask for a copy of your test results for your files.

If you are positive for anti-Ro, you may be especially photosensitive; thus you might want to ask your dr. about sun precautions.

"Mildly positive" ANA probably just means it was positive but not wildly high. ANA fluctuates but is not a very good gauge of disease activity, per Dr. Wallace in his book.

Plaquenil can take as much as 3-4 months to kick in *fully*, but you could feel meaningful improvement more quickly than that. (I certainly did.)

My vitamin D & folate levels were also low before Dx, but those improved steadily, too. Anemia of this type is apparently common with inflammatory diseases.

If you want to read, two excellent lupus authors are Dr. Daniel Wallace & Dr. Robert Lahita. Their books are in most libraries & bookstores.

I'm really glad you got yourself to this point & that life gets better for you from this point on. Let us know how things are going, when you can, OK? Sending my best, Vee

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