He said my test results that they ordered were negative and asked why I was there. (I tried to get a copy but I think there was a misscommunication)
I showed him pictures of my rash and the test results I got most recently with the 39 and 23 reactive bands.
He said that those bands were suspicious even though my test was "cdc negative".
So he's put me on abx and I go see him again next month to see how I'm responding.
I was scared witless at this appt and didn't talk and think like I should so I didn't ask the question that is now bothering me.
Why was my test suspicious 2 months ago but negative 1 month later? DO I have it or don't I?
Is all the crap I'm going through from Lyme or am I in "remission"? Or is it something totally different.
I thought I was going to get answers but I swear I'm more confused now than I was before.
Posts: 115 | From Central PA | Registered: Jul 2009
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posted
Southerngrl...maybe I didn't explain right. He agrees that the rash I had was lyme rash. His comment on the test being negative was before I showed him the pictures of the rash or my other tests.
Then he asked me how I was treated and why I wasn't further treated when the abx I was on before clearly hadn't gotten rid of the infection.
Now I don't know if he said suspicious or specific. He saw the 39 first then the 23 and it seemed that after that he seemed more "sure" of my need for treatment. I pretty sure he said something about the fact that 23 or 39 were specific.
I would have liked to take someone but I just don't have anyone to take.
He also said that there were a lot of strains, I think, and that finding the right abx was like throwing a dart. That we would just have to keep trying till we found one that worked for me.
Posts: 115 | From Central PA | Registered: Jul 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Okay, here is my advise. Start writing down everything you want to ask your doc at your next appt. If you have to, just hand the piece of paper to him. Believe me, he has seen that before, especially with lyme patients. I think I had to do that at one of my first few appts.
Also don't waste energy trying to figure out your test results. 23 IS lyme specific and even if you didn't have that band, LD is a clinical diagnosis.
Let yourself soak that in.
I remember when I freaked out over test results in the beginning. After a while you will come to realize how much of a waste worrying about them is.
All that matters now, is getting well. Your doctor gave you antibiotics, so he obviously is treating you for LD. He wants to see how you react to this particular antibiotic. He may change it next month or not.
If you trust him then don't worry, just let him do his job. Your job is to take care of yourself.
So what if you were nervous at your first appt, you will be more prepared next time and less nervous by then. It will all work out!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Funny on the meds. I went to the pharmacy to get them filled got questioned about pre auths and such or paying the co pay and just decided not to wait on the pre auth so I could get started (also would have cost me same either way).
Got home to take it and found that it was a different med. I forgot that I had another new script in my purse from the day before from another doctor.
oops.
Posts: 115 | From Central PA | Registered: Jul 2009
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posted
Clinical history, such as a tick bite, a rash, or symptoms that sound like Lyme give you and your LLMD evidence that you have Lyme.
A Lyme test can provide more evidence that you've been exposed to Lyme, but the test is so inaccurate with frequent false negatives that there is NO test that can tell you that you don't have Lyme, or that the Lyme you previously had is gone.
So if a doctor says you don't need treatment because your Lyme test was "negative," that's why people question whether he's Lyme literate. LLMDs know not to rule out Lyme just because of a negative test.
It is common for people to test differently at different times and through different labs. It depends how active your immune system is with making antibodies, how the lab does the test, and whether you have the particular strain of Lyme that that lab tests for.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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