Topic: ok now test time, lupus, sjorgren's or lyme?
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
i reacently have had terrible symptoms after being faboulous for 3 weeks before my surgery and 1 week after. main annoying symptoms are very very dry mouth, hurt red dry eyes.use restasis for increase in tears. moving joint pain always. neuralgia always. up and down neuro days.
new interseting symptom started yesterday. the dreaded butterfly rash under eyes, with face feeling like fire.
so lyme dx confirmed many times. all sjorgren's and lupus tests nrgative, mean nothing like lyme.
ithought the butterfly rash under the eyes was dx of lupus the same as the bulleye rash is to lyme???
true or not.
ci know you can get secondary Sjorgren's from lyme. eye doc had me tested for both. can you also get secondary lupus from lyme????
anybody reallly know??? docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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quote:Originally posted by stymielymie: main annoying symptoms are very very dry mouth,
I'm afraid I do not know about a lyme-lupus connection. However, I wanted to mention that for years I've gotten the dry mouth too, and for me it's connected with a slow down in the gut.
Laxatives, or herbal colon cleaners, or anything that promotes gut motility reduces the dry mouth for me. No doctor has been able to explain why.
Posts: 727 | From USA | Registered: Mar 2006
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lymednva
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Member # 9098
posted
The answer is yes, you can have Lyme masquerading as Lupus.
I tried to persuade a friend to look into this and I thought she would never speak to me again. Fortunately we are on friendly terms again, but she's adamant about having Lupus, won't consider looking at Lyme.
I'm not the only one who had the same thought about her and Lyme, maybe just the only one to bring it up.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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tdtid
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Member # 10276
posted
This so called "butterfly rash" has been with me for many years before my Lyme diagnosis. Infact, it was so very present, that I was tested for Lupus more times than I could count.
I was seeing a Rheumotologist on a regular basis and he would consistently tell me that I do NOT have lupus but then what was causing the rash aspect of all my odd symptoms?
I would go to another specialist and they wouldn't believe I said I tested negative for lupus and would retest me. I never did get a positive test for lupus.
I was also suffering from dry mouth and dry eyes and nasal passages all year round so was doing all the saline solutions and then assumed the dry mouth must be a side effect of some med they gave me.
Since this time, I have been diagnosed with Lyme and NOW I hear that this "lupus butterfly rash" is actually another symptom of lyme but not once did a doctor tell me there was any other possibility.
I know when I first came to the boards (I've only been in treatment just short of two months, so it wasn't that long ago), but there was a topic about this unknown red looking butterfly rash that many of us have.
This is not to say you shouldn't go through the usual testing for lupus, etc, but that I can say first hand I was plagued off and on with this rash for five years before getting all the pieces to fit together with a positive lyme test.
Good luck and let us know how it goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Jellybelly
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With all the Lyme in my family, we suspect that my dad who had what they "thought" was Lupus, actually had Lyme. They were never sure he had Lupus, but it looked similar, but then so does Lyme.
I think that Lupus is one of those things that they will eventually find also has an infectious ause, and Lyme will be one of the possibilities.
Posts: 1251 | From california | Registered: Apr 2005
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TerryK
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Member # 8552
posted
I've had the butterfly rash and been tested for lupus many times with negative results. I still have the lupus rash and IgM and IgG IgeneX positive lyme tests.
The page is too big to paste into this message but read this page for info on lyme and lupus. Also, somewhere else on this website he talks about the cheek rash being caused by borrelia. I believe this is the doctor that wrote the recently published books on babesia.
quote: However, I wanted to mention that for years I've gotten the dry mouth too, and for me it's connected with a slow down in the gut.
I also have dry eyes (they were driving me crazy with itching), mouth etc... I have had a gut infection with p. mirabilis that was causing all kinds of digestive disturbances. I've had it treated and since then I haven't been bothered by dry eyes. Thanks for mentioning this because I think you could be right about there being a connection with the gut. Perhaps it is related to fat digestion?? Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
The When To Suspect Lyme Disease essay
http://cassia.org/essay.htm Very often, the pinna and ear lobes are varying shades of red. Less commonly, a similar erythema can be observed on the hands or malar (upper cheeks) areas. A malar rash is not pathognomonic of Lupus, if in fact SLE is distinct from LD (Abstract 55A, V LD Symposium). Fifth Disease (slapped face) is suspected of being due to LD.
Posts: 6286 | From Oregon | Registered: Jan 2006
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stymielymie
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Member # 10044
posted
terry i had never read that bottom article in all the years i've been reading. i tried the palpation test down the bottom ten minutes ago and my tibia still hurts.
yes i know all these disease are very closely related, and secondary sjorgren's is maybe a cop out for more intense lyme symptoms, since bb and babs both cause all these symptoms.
the problem is the literature mentions drug induced lupus. since i am on many drugs, i don't know which ones are doing it or is it the lyme.
the thing that put me into remission for 4 weeks was 5 weeks of vfend. my stomach didn't feel right so i started vfend for 5 weeks. it cleared everything, no symtoms the stress of my wife leaving kicked the lyme back on full force.
don't know whether to reduce the drying drugs, zoloft,trileptal, trazadone,vfend. or reduce the uv sensitive drugs.. biaxin, zoloft, plaquenil, vfend
or maybe i should get a nice young girl to make me happy again!!!!
its half your age plus 7 correct. any 33 year olds looking for a boring time????? i look like santa in the sun and can't see what you look like. but my hearing is good, taste na, but the most important thing still works good.
any more help except from cavey, toney, doney will be appreciated yes ia am a dr., dave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I just wanted to add, that I have the dry eyes/mouth all the time whether on drying or any medications at all for as long as I remember.
I never heard it could be connected to digestive issues. Hmmmm... Wonder how to fix that?
(I'm waaaay to old for you DD, hahahahaha. I'd need a 31 1/2 old. Nah, not unless he cooks and cleans.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Doc Dave, I had a positive Elisa and a positive ANA at the same time.
And I am convinced I don't have lupus.
I have no butterfly rash.
Next week I will get my lab work back with a new ANA.
I am anxious to see if all the antibiotics 'cured' my lupus.....
Von
Posts: 258 | From Washington State | Registered: Nov 2005
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ArtistDi
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Member # 2297
posted
Many people will disagree with me, but I think one can have both infection and an inflammatory condition that brings on autoimmune symptoms.
My group of doctors, including a llmd, neuro, pcp, and now immunologist have concluded that I have two illnesses going on at once--Lyme and autoimmune.
I have chronic pancreatitis, which is quite rare with lyme, but not autoimmune, along with dry mouth and Raynaud's symptoms. I have had to address both the infective and autoimmune qualities of my health.
Doc, look into a good immunologist, because maybe IV gamma globulin or plasma exchange, which is used with MS patients could be an option. In the most simple terms, IV gamma replenishes the blood and body, and plasma exchange takes out the antibodies in the blood that stir up autoimmunity.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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stymielymie
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Member # 10044
posted
your the one that changed the lock on me!!!!!
nom i have to go get a locksmith to come and open the lock!!!!!!lol
daveeey
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Foggy
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posted
Doc, did you mention to your LLMD that you're using Restasis? It's Cyclosporine based, which is an immunosuppresant.
My LLMD told me not to use it.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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stymielymie
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Member # 10044
posted
yes he knows and theophtamalogist was trained in philly and is very lyme literate. he was the one that sent me for tests for sjorgren's and lupus.
very impressive eye doc.
docdave.
cavey: i have the mostest you just waiting for the best last,try all the others but you'll come back to me.
daveey
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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stymielymie
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Member # 10044
posted
caveey, i give up . i got more casseroles when my wife left than you could posibly imagine. the only single guy in a country club community with many single widowed and rich woman.
so, the rest can now have you. i'll take my chances here. it may be a tough job, but somebody has to take care of all these women.lol
daveey Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
men need three things in this order remote control and beer casseroles and food naked women.
see your not number one either.
daveey Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I was dx w/ Lupus. But magically the Lupus which is an incurable desease disappeared w/ my antibiotic treatment of lyme.
It must be a miracle.
Be diligent w/ your meds, vitamins & probiotics.
I was sick for 7 years before being dx. I've now been on antibiotics for over 2 years.
I'm working full time and exersizing regularly. It truely is a miracle.
MIRACLE = ANTIBIOTICS
-------------------- HEATHER
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Fortunately we are on friendly terms again, but she's adamant about having Lupus, won't consider looking at Lyme. ![[bonk]](graemlins/bonk.gif)
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