posted
I read past posts on lupus and lyme but haven't seen any discussion regarding the butterfly rash on the face.
If you have the rash, which I do , would that confirm lupus overy lyme. I have chronic lyme with positive pcr and sometimes western blot. I have bart and babs and all the other various viruses.
Also have chronic imflammatory demylinatING polyneuropathy. I get ivig every other week. I just started weaning off plaquanil and got worse.
Anybody have the rash? Theresa
Posts: 479 | From nj | Registered: Nov 2000
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posted
I get redness in that area due to food sensitivities. My doctor has even noticed it. He tested me for it years ago and found Sjogren's instead.
I was on another board today and someone mentioned that Lupus is a diagnosis of exclusion (like MS) and that nearly everyone with Lupus will test positive for Lyme at one point or another.
Not sure if any of this helps, but thought I would throw it out there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I had the lupus rash on my face (got worse if I went outside), along with positive ANA. This got me a Lupus diagnosis.
But I discovered the rash on my face was being caused by a reaction to the soap I was using to clean my eyeglasses interacting with my skin, and sunlight made the reaction worse. Changing to a different soap to clean my glasses made the rash go away.
But I still tested positive on the ANA test even after the rash disappeared. All of this was before I knew I had Lyme.
Since getting diagnosed with chronic Lyme, and getting some abx and using some herbal remedies, I have not tested positive on the ANA test in a few years.
Incidentally, you may want to stay on Plaquenil - it is listed as one of the meds that helps some types of antibiotics work better for Lyme.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I most certainly had the lupus looking butterfly rash but did NOT have lupus.
I was sent to Rheumotologists and even tested positive with the ANA.
With that said, I was confirmed Lyme about a year later and with years of lyme, bart, and babs treatment, I no longer have that rash.
But yes, I actually was out with my husband with another couple and the man said that my rash looked like Lupus and he knew that because his first wife died of lupus.
The current girlfriend kicked him under the table and told him that was not what he should be telling me.
But I say this only to say that in my case, it was Not lupus and can be treated. I'm now healthy and in long term remission and no more butterfly rash or any of the other tons of horrid symptoms.
Good luck to you and keep us posted.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thank you all for response. My symptoms aRe very intense since stopping plaquenil. I started it again. I guess no one can tell the difference between a true case of incurable lupus and chronic lyme. God bless theresa
Posts: 479 | From nj | Registered: Nov 2000
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I was just wondering... How did you find out you have chronic polyneuropathy? I feel as though I have been exhibiting those symptoms and thought it was all just due to Lyme. So how did you find out? What tests were ordered for that? Thank you!
Posts: 123 | From New jersey | Registered: Oct 2015
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posted
When I exhibited signs of neuropathy of my feet I went to a neurologist and he sent me to someone for emg testing. They test your nerves with a needle and a meter . That determined I had demylinating nerves. There was ana testing for autoimmune disease also a spinal tap.the thing is it can be caused bu a Tru autoimmune condition which could be controlled but not cured or lyme disease. My doctors feel if you cure the lyme it will stop. I hope this helps. I'm not the best at explaining things. Theresa
Posts: 479 | From nj | Registered: Nov 2000
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I have the butterfly rash and am CDC+ for Lyme and have a + ANA for Lupus.
My Dr did a Anti-DS-DNA test as an additional way to check for Lupus.
It came out positive as well.
I've been in treatment for years now and still get the rash any time I walk outside and don't
have sunblock on. To be honest, I'm still not sure what to think about it all.
I agree with Razzle about the Plaquenil.
Feel free to PM if you want to.
Posts: 1408 | From Tx | Registered: Nov 2009
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