Rare disease? Sjogren syndrome maybe? Had lyme disease 3x 20 years ago but cured.?

by Cures For Stuff



I’m trying to figure out what is going on with me. I have gone through years of problems. I had lung problems at birth. And most of my childhood had severe dry eyes. Things progessed to 3 collapsed lungs, Tumor removed in my appendix, Bad teeth (well to me it is but I have to work real hard to keep them together), Numbess feeling in my hands, feet and face, periods of memory loss, brain fog, swelling in joints, arthritus, fybromyalgia, sharp shooting pains in the corners of my eyes. Legs feel like they are burning at times, I jolt my legs when I sleep. Stand for to long and I have a major shooting pain in the left lower part of my abs. Sharp shooting pains in the sides of my chest walls and occasional middle where the ribs meet. I get lumps that dissapear they get real big then go down takes time. Weird rashes on my pointer fingers, elbows and knees. Psoriasis on scalp and eyebrows. And yet the tests come up negative for locking me into a specific disease. Any ideas?
I have ulcers in my mouth as well. Lost %50 motility in my throat.
Past year have not been able to stand my armpits being touched feels swollen. Doctors now adays don’t seem to want to be bothered with me or atleast the ones I have chosen. They see a symptom and say thats odd and do no more. Eye pain they didn’t even look at my eyes. Even Dartmouth Medical in NH won’t call me back to help me know what is wrong. I’m out of Mobic and they appartently have been to busy to call me in the last 48hrs that I have left a message. I’m tired of being sick.
HIV test was negative and I know I was tested for HEP A and B with negative unsure if they did C or not. Lyme test was negative, Lupus test negative, not fully sure what tests were done they were also done over a year ago. Vitamin D level is low and Potassium has been low causing my blood pressure to be very high. On 50,000ui 1x a week for D. Just eat a better diet for the potassium.
I don’t believe its lyme disease. Maybe something that could be from it but I don’t believe that I have it. Went to one of those lyme literate doctors and he was a scam. Done the seminars and discussions as well. Alot of them were zeroing out there white blood cell count. To me that is crazy. I have looked into the history of my family and truly believe this is something genetic. Lyme could of made it worse but I don’t think that is the underlying problem.

{ 2 comments }

1 Stephanie December 7, 2009 at 12:23 pm

you need a hep panel run- do not rely on a liver panel as with many people with liver disease do not always show and increase in alt and ast.

you have many classic symptoms of hcv infection.

i had almost every symptom you mentioned beginning at age 8. (mid 70′s) and wasn’t properly diagnosed until I was 34. dont wait….get a hep panel done.

good luck and hugs….i’ve been there!

2 Dekayel December 7, 2009 at 12:32 pm

The symptoms you list just scream “Lyme disease and co-infections”! Be advised that the Lyme test they probably gave you (the ELISA test) has a very high false-negative rate. Which means you might test negative, but still have the disease. (Plus, if you had Lyme 20 years ago, there’s a strong chance it wasn’t completely eradicated–it’s known to hide out in the body and then come roaring back at another time.)

You’ve also discovered the truth that mainstream medicine doesn’t recognize chronic Lyme when it’s staring them in the face–it’s a story is repeated over and over and over, leading to untold suffering of thousands of people.

You need to get to a doctor that knows how to recognize and treat long-term Lyme, and that will be someone associated with the International Lyme and Associated Diseases Society (ILADS). Some of your problems may well be those “associated diseases” also known as co-infections–other illnesses transmitted by the same tick-bite that gave you Lyme. But they require a different kind of treatment than Lyme–so if you have co-infections 20 years ago, the antibiotics given for Lyme wouldn’t have helped.

I suggest you go to http://www.lymenet.org, click on “flash discussions” and then click on “medical questions.” Here you can communicate with hundreds of patients who have experienced similar symptoms, and have advice on how to determine if in fact Lyme is what you are dealing with. They can also advise you on how to find a good Lyme-literate doctor.

Other good sources of info about Lyme disease:
http://www.canlyme.com
http://www.lymeinfo.net
http://www.lymediseaseassociation.org
http://www.ilads.org
http://www.betterhealthguy.com
http://www.publichealthalert.com
http://www.freewebs.com/teenswithlyme
http://www.lymetimes.org

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