I've learned some things by reading these forum postings, but this all has me pretty confused... Here's a few questions...
1) Can you initially have a "presumptively positive" test to begin with, then test negative 2 months later, even if you're still sick? 2) Anyone know a source for easy-to-understand information on how to understand my test results? (I mean, just to help me be able to read them- I know they're not gospel truth.) 3) Would you reccommend ignoring the tests completely, as long as I'm dealing with a doctor who's really committed to figuring this out? (I'd still be curious to learn how to read them)
And here's how things have played out so far (hope this isn't too long- but it seems like people wanna hear details on this forum)...
When I initially got sick (a few days after a deer tick bite), I was put on 3 weeks of doxycycline immediately, without waiting for tests. Great, right? I mean, at least the ER doctor didn't tell me I had the flu. The first antibody test came back with an "abnormal" flag, but western blot was negative- I have since learned that the wb would pretty much never come up positive that soon after infection, Correct? Basically, I was diagnosed based on just symptoms and the tick bite.
I was feeling fairly good for a few weeks following the doxy. Then sick again. Went to a great new doctor. Really, he's just great. He ran the tests again, fully expecting a positive wb. He put me on more doxy, for now. Well, this time I tested totally negative, but am obviously having a relapse of exactly the same illness. My gut still tells me it's Lyme- and I clearly respond well to the doxy.
Oh, "Dr. Great" was surprised by the neg results. He told me to stay on the doxy anyway. Like me, he feels my symptoms and pattern of illness are consistent with Lyme.
Many thanks to all of you who lend knowledge and support here.
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
1. Sure. No test can tell you whether Lyme has left your body.
2. Someone else will have to help here.
3. So far as the tests. I would not fret about it. What you want is treatment. If you are getting treatment then dont worry about it.
If you have a Western blot too early..false negative. Too late...false negative. Some people dont make antibodies at all genetically and so therefore never have a positive Western blot.
posted
western blots are very unreliable tests .they are done on a gel medium and the reading of the gel lines is very, very subjective. the only reliable test that if positive is positive that lyme bacteria is in your system is a pcr test for lyme or coinfections. even this test is questionable depending on the lab doing the test. this is a dna test for the actual bacteria in your system, if its positive you have lyme bacteria active in your body period. the problem with this test is that it only tests the sample they send to the lab, blood and urine. the lyme bacteria can be in such minute quantities in the blood that the sample they take may not have a bb bacteria in it. this disease does not produce hugh number of bacteria as with tb or an infection, the bb bacteria can be hidden in muscles,tendons, lymph nodes, synovial fluid, and spinal fluid without being in the actual blood stream, hence you could have lyme and never get a positive pcr because of this. at this point in time there are no gp's in the country that know enough about lyme to treat adequately. you should seek a llmd asap/
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I've learned some things by reading these forum postings, but this all has me pretty confused... Here's a few questions...
1) Can you initially have a "presumptively positive" test to begin with, then test negative 2 months later, even if you're still sick? 2) Anyone know a source for easy-to-understand information on how to understand my test results? (I mean, just to help me be able to read them- I know they're not gospel truth.) 3) Would you reccommend ignoring the tests completely, as long as I'm dealing with a doctor who's really committed to figuring this out? (I'd still be curious to learn how to read them)
And here's how things have played out so far (hope this isn't too long- but it seems like people wanna hear details on this forum)...
When I initially got sick (a few days after a deer tick bite), I was put on 3 weeks of doxycycline immediately, without waiting for tests. Great, right? I mean, at least the ER doctor didn't tell me I had the flu. The first antibody test came back with an "abnormal" flag, but western blot was negative- I have since learned that the wb would pretty much never come up positive that soon after infection, Correct? Basically, I was diagnosed based on just symptoms and the tick bite.
I was feeling fairly good for a few weeks following the doxy. Then sick again. Went to a great new doctor. Really, he's just great. He ran the tests again, fully expecting a positive wb. He put me on more doxy, for now. Well, this time I tested totally negative, but am obviously having a relapse of exactly the same illness. My gut still tells me it's Lyme- and I clearly respond well to the doxy.
Oh, "Dr. Great" was surprised by the neg results. He told me to stay on the doxy anyway. Like me, he feels my symptoms and pattern of illness are consistent with Lyme.
Many thanks to all of you who lend knowledge and support here.
What about PCR testing and the Lyme urine antigen test (LUAT). DNA doesn't lie but timing is important on the testing. Find a LLMD. Doxy is the drug of choice for an acute infection. Chronic Lyme needs to be treated more aggressively, ie Zith, Biaxin, Flagyl....
Posts: 40 | From Brandon, MS. USA | Registered: Dec 2003
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