I've had Lupus for the last 20 years and in 2000 I had a bull's eye rash on my leg. I was dealing with a lot of deer at the time. Was told that there was no Lyme disease in southern Ca. So I ignore it till two years later when my test turned positive. Three years ago, my tongue started swelling, the skin on my hands and face is getting thicker and tighter and I have been told that I don't have scleroderma. I spent 6 days at the Mayo Clinic, went through a whole battery of tests including a tongue biopsy to be told that I don't have lupus, I don't have scleroderma and I don't have lyme disease, but I have epithelial hyperplesia with submucosal edema (properly translated: swollen tongue)... They don't know what the cause of all these symptoms is. It is scary and frustrating. Just wonder if any of you out there has been dealing with this kind of symptoms?
Posted by mjbucuk (Member # 843) on :
my son always tested negative by ELISA testing... despite having lyme (& babesia). In other words, the tests are not necessarily accurate.
(My son does not have the same symptoms as you... but perhaps someone else can help you there.)
Posted by Jill E. (Member # 9121) on :
I'm sorry I don't have an answer to your specific symptoms, but just want to confirm that there is Lyme in Southern California.
Unfortunately, most doctors do not know or will not admit it.
I was bitten four years ago in San Diego in a residential neighborhood standing on cement feeding a cat. My dad was bitten this summer and now we suspect my mother was too. All they've done the past four years is take care of me. None of us are outdoorsy people.
If you visit the CaliforniaLyme group at Yahoo groups, the home page has a map showing that Southern California is confirmed as a high-risk Lyme area even by the California Department of Health.
I even have a report indicating which neighborhoods in San Diego have proven Lyme ticks, and the doctors still won't believe me.
I have made many friends among Lyme patients in Los Angeles, Orange County, San Diego, etc.
So you are not alone. By the way, even though you were near deer, Lyme ticks are often carried by rodents - this is the major way in Southern California, so please be careful around rodents. Here in San Diego we have tons of them because homes are built near canyons, etc.
One of the excuses the local doctors gave me for there being no Lyme here is there are no deer in my neighborhood. But I know there is a terrible rodent infestation!
Many people have had problems with Mayo not believing in Lyme, especially chronic Lyme.
Take care, Jill
Posted by klutzo (Member # 5701) on :
My first thought in seeing your sx was hypothyroid. Lyme often causes hypothyroid, but low thyroid function from any cause can make your skin thicken and your tongue swell. Have you got any other sx of low thyroid? Have you had a blood test for Complete Metabolic Panel done recently?
I am not a doc, and could be completely off base, but if it hasn't been checked, including your T3 level along with the usual TSH, it would be a good idea.
Klutzo
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Deep in 'tis pear: I've had Lupus for the last 20 years and in 2000 I had a bull's eye rash on my leg.
I would definitely suggest getting tested again thru Igenex Labs in CA. It's one of the best labs for Lyme testing. A bullseye means you had/have Lyme.
Do you ever have crawling or biting sensations? Thickening of skin could point to Morgellons, go to Radio Shack and buy there $9 dollar pocket scope, see if you have black specks and or fibers embedded in your skin.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Deep in 'tis pear:
I've had Lupus for the last 20 years and in 2000 I had a bull's eye rash on my leg.
I was dealing with a lot of deer at the time. Was told that there was no Lyme disease in southern Ca.
So I ignore it till two years later when my test turned positive .
Three years ago, my tongue started swelling, the skin on my hands and face is getting thicker and tighter.
I have been told that I don't have scleroderma.
I spent 6 days at the Mayo Clinic, went through a whole battery of tests including:
* a tongue biopsy to be told that I don't have lupus,
*I don't have scleroderma
* and I don't have lyme disease,
* but I have epithelial hyperplesia with submucosal edema (properly translated: swollen tongue)...
They don't know what the cause of all these symptoms is. It is scary and frustrating.
Just wonder if any of you out there has been dealing with this kind of symptoms?
Welcome; I've not heard anyone talk of the swollen tongue.
Posted by tothepoorhouse (Member # 8595) on :
OMG, I can't believe no one has spoken of a swollen tongue. I have this. So bad that at times I have to just hang my mouth open to breathe.
At night, I have to try to curl it as I try to go to sleep. Hard to explain, but it's like my tongue is too big for my mouth.
I also have thyroid problems so I don't know if it's lyme, thyroid, both or what that is causing this. Docs don't seem to have any answer.
But I definitely understand.
Sometimes I feel like Gene Simmons from Kiss....if anyone gets the reference. Posted by Marnie (Member # 773) on :
Your cortisol level is low, yes? Thick skin.
Adrenals might be pooped out.
Swollen tongue...niacin deficiency.
Posted by radiogirl (Member # 9202) on :
there are atleast 100 cell wall deficient bacteria they do not test for.You can always ask for an antibiotic probe to see how you react.These bacteria can all cause edema .Go to www.immed.org clinical papers there.Also go to roadback.org go to bulletin board and see if you can find a doctor in your area that specializes in AP(antibiotic protocol).You can request a list.Therare alot of people on that board with all kinds of diagnosis often told there was nothing else or more medicine can do for them that are thriving with the help of the AP.Keep Going You Will Get Through This,RG
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