posted
Hello, My doctor (internist, specializing in environmental medicine) has been telling me i have Lyme disease, and I'm getting more convinced he is correct. The problem i have with it is that the Western Blot test was inconclusive. I don't completely understand the test results (most columns were negative), but i was positive ++ for band 41kDa "having been exposed to spirochetes", on both the IGm and IGg tests, though, as my doctor says, that doesn'thave to mean lyme spirochetes. I was IND for band 31 kDa on IGm, and IND for band 39kda on the IGg test. He says the test is not always reliable, especially in the case of someone who is not well enough to mount an antibody response. That would be me. I also have chronic mercury problems (being addressed).
The one thing that tends to convince me is my CD57 count, which was 15 a few months ago, and now is at 11. I understand that's very low and is indicative of late-stage Lyme. Does anyone know -- is that always the case? Or can something else make CD57 that low? What does that mean for my chances of recovery?
Several reasons I have been hesitant to believe i have Lyme is 1. The WB test inconclusive 2. Been careful about ticks, never had a rash 3. Don't have any joint pains 4. my temp is chronically low (even on thyroid med it rarely gets above 97). I don't get feverish though i feel feverish in spells..
The reasons for believing i have Lyme are: 1. CD57 = 11 2. have spent time in NY woods and Maryland woods (and French woods -?), and Colorado woods, and Florida wilds.
I have autonomic nervous system problems, fatigue, autoimmune issues (blood tests), adrenal and thyroid hypofunction, and other symptoms which may be attributable to either Lyme, Mercury, or both, or neither (i like to keep an open mind).
I also tested negative for babesia, but my doctor thinks i have it. He says the test for this is quite inaccurate. I was on Plaquenil for 2 months but went off it because i was too miserable on it.
Considering the miseries involved so far in treating Lyme, it would help to know more clearly that i actually do have Lyme disease.
So, I guess i'm looking for people here who are experienced with chronic Lyme, and maybe know something about the various tests (i've had lots of them), and wouldn't mind giving me some advice.
thanks for listening, NJ
Posts: 22 | From Maryland | Registered: Mar 2008
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I know how you feel.
Posts: 85 | From Staten Island, NY | Registered: Nov 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Do a search for low temperature. Many of us have low temp all the time because spirocjetes cant live in high temps. We also have low blood pressure.
Most lyme patients DONT get the classic bulls eye rash. I only got hives.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
It is not an uncommon scenario. The low CD57 is a good indictator though I would not go with that alone. If someone had no symptoms and no Bb bands, that might make me wonder. You have some Bb bands though with the 31 and 39. It sounds like your immune response is suppressed and thus you are not going to show much with antibody testing. Consider some testing for co-infections, or even the Central Florida or Fry Labs testing to see if you can get more to support the dx. It sounds likely though.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Can you tell me where to get more information about "Central Florida or Fry Labs testing"?
thanks, NJ
Posts: 22 | From Maryland | Registered: Mar 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by LisaS: Do a search for low temperature. Many of us have low temp all the time because spirocjetes cant live in high temps. We also have low blood pressure.
I didn't know lots of lymies have low blood pressure and that it's possibly caused by lyme. Mine is always so low! 80/50's and 90/50's.
Same with my body temp. Luckily, though, it's seemed to have gone up somewhat with treatment.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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