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Posted 3/2/2009 12:46 PM (GMT -5)
Has anyone been or heard of someone being misdiagnosed with lyme and ended up learning it was lupus, or vice-versa?

I happened to be reading about lupus and it was described as "one of" the diseases that are often called "great imitators", which as you know, lyme is also called that.

Although the listed lupus symptoms do not seem familiar to me, figured I'd see what you guys know...

Posted 3/2/2009 1:28 PM (GMT -5)
It was thought that I had Lupus for years but I always tested negative on the ANA. I think they can test you using ANA and it is not elelvated in Lyme but is with Lupus.  D

Posted 3/2/2009 2:06 PM (GMT -5)
And there should not be any CD-57 or western blot abnormalities with lupus as well, then I take it?
Posted 3/2/2009 3:09 PM (GMT -5)

I was reading alot on Lupus and there are specific tests you can have done for Lupus not just the ANA. I honestly can't remember what they were but I can look them up if you want. I had them listed at one point and I was going to have my doctor do them. I am still very unsure about my Lyme diagnosis and was looking into other diseases.

I have a low CD-57 but I don't think that test means a whole lot. Post if you would like me to get those test names for you.

Kim

Posted 3/2/2009 3:20 PM (GMT -5)
My doctor wouldnt even do the CD-57, said it did not "prove" anything. I just wanted to see what my levels would show, he downright refused. Not sure why he had such stronge opposition  D

Posted 3/2/2009 3:57 PM (GMT -5)
Lupis was the very first MISDIAGNOSIS among many that I have since 2003.
Posted 3/2/2009 4:15 PM (GMT -5)

Dowa said...
My doctor wouldnt even do the CD-57, said it did not "prove" anything. I just wanted to see what my levels would show, he downright refused. Not sure why he had such stronge opposition  D


Which doctor?  A doctor presuming and treating Lupus or an LLMD, refused to do CD57?
Posted 3/2/2009 4:50 PM (GMT -5)
I was dx with lupus in April 07. I was not satisfied with that dx so looked deeper, discovered lyme, got tested and I was cdc neg, but had a few lyme bands, then was dx by an LLMD with lyme Aug 07.

My LLMD thinks it's only lyme, My Rheum doesn't think it's lyme. I think it's both. I think I was infected with lyme many years ago and  it turned into "lupus"
Dr's have no idea what lupus is, as they don't know what fibro is. They gave these illnesses names not knowing how or why they are.

I'm classified as having lupus with lasting effects from lyme.

No one really knows.................yet!
Posted 3/2/2009 5:38 PM (GMT -5)
Lyme actually CAN cause an elevated ANA count, but it won't usually be as high with Lyme as it can go with Lupus. I've got a diagnosis of "Secondary Lupus" but I personally believe it is Lyme because I don't have the symptoms consistant with Lupus but DO have clear symptoms of Lyme. There are specific antibodies present in most with Lupus that may or may not be present in those with Lyme. And it is possible to have both - if a person who has Lupus is bit by a tick carrying Lyme, then they are just as likely to get Lyme as anyone else bit by a Lyme-carrying tick.

My $.02...
Posted 3/2/2009 5:40 PM (GMT -5)
Well, the description of lupus that I found would cause me to describe it as an immune system issue where apparently your own immune system is causing damage.

Doesn't the "other" camp in the Lyme community suggest that "chronic lyme" maybe some sort of immune system response that continues even after the lyme bacteria are killed off by treatments? Coincidence?
Posted 3/6/2009 9:02 PM (GMT -5)
Razzle,

I didn't know that LD could cause an elevated ANA, that's very interesting.  I had a "speckled pattern" ANA result.  My Neuro called it a borderline Lupus result, which is crazy.  This is the same Dr. that wouldn't even test me for LD because I never had a Bull's eye rash.  When I finally got a WB 7 years later it was positive.  This Neuro was saying everything BUT LD, maybe MS, maybe Lupus.  I learn something every day! 

Posted 3/7/2009 8:13 PM (GMT -5)
Both my husband and my 4 year old son had an elevated ANA from lyme!

tickbattler
Posted 3/10/2009 4:50 AM (GMT -5)
I believe ANA can be elevated due to inflamation. My daughter had an elevated ANA with a speckled pattern when she was 5. Pediatrician suspected Lupus, which she of course did not. Was dx lyme, treated for a long time, symptom free for over 10 years.
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