Help!! Negative test after two positives but still symptomatic

I’m new here. I suspect I’ve had lymes for a long time and had many false positive’s. Two years ago I tested positive and have tested positive- until now. I’m seeing a new LLMD who initially put me on oral abx and is now planning on placing a picc ( which would be my third) and doing iv. He was also going to take me out of work for the 6 weeks or so I was on abx, which as a single mom who works full time as a nurse I could really use the rest. He did labs because I haven’t had them done in awhile and my lymes came back NEGATIVE. I’ve had at least two positive test so I’m very confused, it was a regular antibody test. I have been symptomatic which is why I went back for treatment. I’m very confused right now and concerned that this will change the plan we discussed. Please don’t think I want to have lymes, I just thought I finally found a MD who could help me and now my blood work says I’m negative. I have heard of false negatives, I’m pretty sure I had quite a few, but I’ve never heard of a false negative afraid positive test.
Any help would be appreciated

Hi and welcome!

In our files there are charts that list symptoms of the various tick diseases that have been discovered. You might want to look through our intro to new members, and take the time to look at those charts.

As the above poster stated, Half the tests come back negative. I can't remember what percentage of that are false negatives but bear in mind that the Lyme bacteria changes itself a number of times inside of us, and is able to hide without being in our blood stream. Most Lyme tests are testing blood, so if the bacteria isn't in it at the right time, it gets missed.

I'm not sure if the urine test is still available.

Also the CDC isn't honest about the tests or the infections and often require more positive results than necessary to actually BE positive.

If I were you I'd go by symptoms and not worry too much about test results.
So, you're seeing a Lyme Literate Doc now? If you are still symptomatic, you are still positive meaning the bacteria, if it was ever in you, very likely still is.

Frustrated38 said...
I’m new here. I suspect I’ve had lymes for a long time and had many false positive’s. Two years ago I tested positive and have tested positive- until now. I’m seeing a new LLMD who initially put me on oral abx and is now planning on placing a picc ( which would be my third) and doing iv. He was also going to take me out of work for the 6 weeks or so I was on abx, which as a single mom who works full time as a nurse I could really use the rest. He did labs because I haven’t had them done in awhile and my lymes came back NEGATIVE. I’ve had at least two positive test so I’m very confused, it was a regular antibody test. I have been symptomatic which is why I went back for treatment. I’m very confused right now and concerned that this will change the plan we discussed. Please don’t think I want to have lymes, I just thought I finally found a MD who could help me and now my blood work says I’m negative. I have heard of false negatives, I’m pretty sure I had quite a few, but I’ve never heard of a false negative afraid positive test.
Any help would be appreciated

Hi Frustrated - welcome!

There is a high percentage of false negatives with Lyme antibody tests.
Getting a negative doesn't really mean anything...except that your immune system hasn't mounted a response to the bacteria.

If you were positive before with symptoms....and didn't do effective treatment...and you still have symptoms...then you still have Lyme disease.

Buhner protocol is a popular one on this forum.


Keep reading posts...ask questions...etc.