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Lyme Disease Message Board


Lyme Disease Board Index


Hi,
I was dx'd with lyme when I was 20 - after it had progressed into encephalitis & meningitis- so I was hospitalized for 1 week on antibiotics and sent home with oral antibiotics for another couple of weeks. (that was in 1980) In the last couple of years (+) I've developed autoimmune disease but doctors can't pinpoint what variety of AI it is. It looks like seronegative rheumatoid arthritis, looks like lupus, acts like MS, chronic fatigue, I have mild seizures, tachycardia, sjogrens, etc. - but no label other than UCTD. I'm wondering if it has something to do with the Lyme disease since I probably didn't have proper treatment 17 years prior. Can Lyme go dormant for a long time and then start causing problems again?
I'm on methotrexate, prednisone, enbrel, anti-seizure meds, muscle relaxants and have been through numerous specialists.
Now my thryoid seems to be giving out since my cortisol levels are now very low. I've lost 35lbs in the last 6 months, I stay cold all the time, low blood pressure (90/50), low body temp (in low 97 range) only slightly elevated ANA (1:80) but I do have positive C-ANCA which perplexes my rheumatologist - I don't have Wegener's or Lupus. I've been REALLY sick for 2 years now. At times, it's been difficult to walk/climb stairs and at other times, I've battled narcolepsy (which isn't happening right now thank goodness). I've been referred to an endocrinologist recently to do ACTH testing - but of course, the wait to see the endo is 2 months.

My rheumatologist ran a BB lab early on and it was negative - but I understand those tests aren't always reliable.
I may be out of my mind thinking the Lyme could still be in my system after this long. Can anyone put my fears to rest (or not) ?
Thanks for any advice~
Gina
Gina,
I'm in the same boat as you. I have been sick for several years and last year was diagnosed with a "mystery" autoimmune disorder by my rheumy, and my primary doctors is sure it's Lupus, even though I have a negative ANA. I had several tick bites 30 years ago, and vaguely remember a bullseye rash on my big toe, but otherwise did not get sick (that I can remember). So i had no treatment. I also have many of the symptoms ticker listed. It's difficult when the symptoms also apply to so many of the other diseases. I also have two kids who I am worried about. I just want a definitive answer to my problems.

I'm also on prednisone and plaquenil. I have gained so much weight on the prednisone. As if I didn't have enough problems. But prednisone is the only thing that takes away the excruciating pain I had in my muscles.

I hope you get some answers. My doctor dismissed my story of a tick bite and rash 30 years ago, but then again, he probably doesn't know much about Lyme.





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