posted
My eye(s) is/are bad again. (mostly my right eye)
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?
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
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?
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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posted
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.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
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.
Posts: 5237 | From here | Registered: Nov 2007
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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
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
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
Posts: 184 | From taking pills | Registered: Oct 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
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.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
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.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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