Sensitivity of tests for co-infections?

I'm still struggling with a clear diagnosis, but haven't had igenex testing yet. My LLMD was skeptical about the value of co-infection tests--even done by igenex--since she sees lots of false negatives.

2 LLMDs diagnosed me with likely Lyme plus co-infections, and several blood tests support Lyme, but nothing definitive. For example, Labcorp: Positive IgG band 41, and Cd 57 - 26. (Of course, subsequent visit to infectious disease dr told me NOT Lyme or any co-infection and offered no recommendations)

I've been doing cowden protocol for over 1.5 months. I seemed to have some increased energy and function level in first couple of weeks. Now, not so much, plus debilitating headaches, the hallmark of my first 8 months of illness, seem to have returned with a vengeance.

My LLMD ordered Lyme tests #188 and 189, but left it up to me to decide which Bart and babesia tests to have igenex run, depending on how much I was willing to spend on possibly false negative tests.

I made the mistake of contacting anthem to ask about likely reimbursement for igenex, and now I have to wait for my LLMD to receive notification by snail mail about what tests anthem will reimburse.

If I could go back in time, I'd just get tests run and ask for reimbursement afterwards. I'm wasting precious time and feeling pretty hopeless.

Curious about y'all's experience with igenex co-infection tests. I was very confused about the many possible tests they offer for babesia and bartonella.

Thank you for sharing your experience or advice.

Runnergirl82, thanks! Do you know specifically which Bart tests were run?

a llmd with 25 years experience sounds great IF your experience has been good with him. I guess uncertainty is part of the Lyme torture

What is your health worth? I'd give every cent I own to be 100% healthy. If you have the funds then do a full Igenex test with co-infections. While it still isn't more important than a clinical diagnosis it can help in your overall treatment plan. I did the full tests and came back positive for Lyme and Babesia Duncani. My LLMD knows the Duncani strain is harder to eradicate so it gives him more information to go about treating me. I happen to be fortunate that I was originally seeing a doctor in my network who was familiar with ILADS and Igenex and ordered the tests so my insurance company covered most of the tests at the normal % for in-network (with the exception of a few considered "experimental"). It was reimbursed after I paid out of pocket. This is rare though you usually only get reimbursed through out of network if you have the option.

Yes, I'd pay any amount to have my health back. But I certainly don't have money to spare or throw away on unreliable tests.

I'll get igenex testing for Lyme at least, maybe others as well. Thinking I'll talk to llmd and go ahead and start antibiotics to target coinfections. I'm not getting better on cowden after 48 days.

Thanks

What I've heard is that taking antibiotics prior to the Lyme test actually helps (it stimulates your body to produce antibodies and avoid a false negative) BUT Girle, you are right, you do need to be off them for a period of time before the Igenex test.

I was on antibiotics for 2 weeks, and then I was off of them for a month before having my test taken. I remember I called Igenex and asked what they suggested and they were helpful (I can't remember their exact answer), so maybe give them a call and ask.