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Lyme Disease Message Board

Lyme Disease Board Index

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~

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