I'm not being treated for co-infections nor have I been tested for anything except for two strains of babesia. (negative)
My eye issues have been my major problem with Lyme. That and depression. I have also had buzzing in my head/ears for a month. I guess in my case, Lyme really is all in my head.
I know bartonella can cause the problems I'm having, but I've had no other symptoms. My LLMD clinically ruled out co-infections.
However, I'm wondering if I do have something else. My LLMD thinks this is all Lyme but when I asked about testing for co-infections, I was told that a there are a lot of false negatives and a negative test doesn't mean I DON'T have a co-infection.
I'm confused as h-e-hockey sticks.
Do I even bother getting tested for co-infections? (I got a kit from Igenex) I don't think I'm going to get treated for anything else if I don't get a positive result, yet I'm told that a negative result could be inaccurate.
Clear as mud?
I just don't know what to do. I've been treating for almost 8 months. The problems I have are getting worse. Shouldn't SOMETHING at least be starting to improve by now?
Posted by Larae30 (Member # 35220) on :
Some of my tests have been positive, some negative. I have been treating lyme and babs and thought that was all I had. I started Rifampin last week because of possible bart on a blood smear result and have been herxing, soooo I have bart, too...
I almost feel like you should attempt treating them to see if you have a reaction because the testing is so unreliable?
Posted by slowli (Member # 36697) on :
My LLMD didn't bother with testing, also because there are so many false negatives, but her response was to treat me anyway based on symptoms that were borderline Lyme/co-infections.
You might want to try a new LLMD, both because you're not progressing in the right direction and he or she isn't doing anything about it, and also because he or she seems to be erring on the wrong side of caution.
Posted by sammy (Member # 13952) on :
Ask for the tests. I was positive for many coinfections and I have an immune deficiency that should makes these tests less accurate (more likely to be false negative for me).
Your LLMD is probably trying to be kind and trying to save you money. But you have to balance that with knowing what is going on. Knowledge is power. A positive test could help.
If she really doesn't want to test, ask her to try treating you for awhile. See if you can gain some symptom improvements that way.
Tests are imperfect. Be open and talk with you doctor. Explain your concerns and she should be understanding.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by slowli: My LLMD didn't bother with testing, also because there are so many false negatives, but her response was to treat me anyway based on symptoms that were borderline Lyme/co-infections.
You might want to try a new LLMD, both because you're not progressing in the right direction and he or she isn't doing anything about it, and also because he or she seems to be erring on the wrong side of caution.
-Exactly
Posted by In19944 (Member # 34272) on :
So true..some drs like my firsr one purposely didnt test because the results might mean aggressive treatment....more liability on her part. That led to 7 months of inadequate treatment.
My second doc ran a full panel and i tested positive for 8 others.
I would switch docs if possible
Posted by WPinVA (Member # 33581) on :
It sounds like you gave this doctor a good try but it's not working out. As comparison, I have been in treatment for 9 months. I still have a ways to go, but I am feeling a LOT better these days.
I don't see any reason not to test for co-infections. If you're worried about the cost, you could start with LabCorp and see what you get, then make the decision whether to pay out of pocket for Igenex.
Posted by sideways (Member # 34352) on :
I just wanted to thank everyone for the responses so far. I'm going to go ahead with the testing. I just have to find somewhere to get my blood drawn. Hopefully our family doctor's office will do it.
Posted by Lymetoo (Member # 743) on :
Just remember that even if the test comes back negative, you could still have a coinfection.
Posted by sideways (Member # 34352) on :
I just wanted to thank everyone for the responses so far. I'm going to go ahead with the testing. I just have to find somewhere to get my blood drawn. Hopefully our family doctor's office will do it.
Posted by sideways (Member # 34352) on :