Tested positive once, negative after

Hi all!

I recently moved from the coast of Maine to Georgia and have been suffering for years with chronic fatigue, headaches... the usual suspects.

In Maine I tested positive for Lyme with a western blot and was given a round of doxy and then went on the Results RNA sprays, and felt as normal as I could imagine. Then, with that being pretty expensive, I stopped and started to feel a little worse and all, but thought maybe it was something else. But I was re-tested for Lyme, twice. Both of those have come back negative, but I'm wondering...

that'd be on the side of "possible", right? To have been tested + one time and then - afterwards? Or am I just fishing? My symptoms are rough, again. I'd been admitted to the hospital because of suicidal tendencies and the fatigue is absolutely debilitating.

I thought I'd come on here and introduce myself and also seek a little input.

Thanks!

Hi Lyme_in_Georgia!
Welcome to the community!

If you haven't yet, we do encourage all new members to read through the "New to Lyme" thread, as it has a lot of really great and helpful information contained in it.

It's really very possible that you had just enough treatment to push the bacteria out of the bloodstream enough to keep you from having a positive test this time - but the timing of your experience certainly indicates that you likely didn't have enough treatments - especially if you weren't able to extend the treatments for 2 - 3 months past the point where you had no more active symptoms.

These bacteria don't live out their lives in the bloodstream, where the immune system can get to them, and testing can reveal them - and the testing is very faulty, missing up to 50% of those that actually have the infection - not to mention the co-infections that are usually there as well. Where you tested for any co-infections?

Unfortunately, many Lyme patients do attempt suicide, or deal with suicidal thoughts. I know I did. This can be from Lyme or Bartonella (one of the co-infections that are possible), and is considered a symptom of these infections. So do be sure to include that with your list of symptoms.

Do you have a Lyme literate doctor to evaluate you again? I would suggest talking to a LLMD, or you could try starting a natural treatment on your own to see how you respond.

Let us know what other questions you may have and we will see how we can be of help!!

Well hot dang, thanks for the notes so quickly!

I was at Erlanger yesterday and while my PCP admits she doesn't know much at all about Lyme or about natural healing, she understands that Lyme is a real thing and that holistic health works, as well, and gave me someone to see whom others have also recommended. I'll give him a shot, and try getting back on the supplement package I was on a couple years ago. That was when I was felling the most normal I had in a long time.

Thank you, again!

Good luck and let us know how you are doing.

I would go back on the protocol that previously worked - and hopefully you will get results again.

Thanks, Traveler! I've been working hard to wake up every morning and embrace that my life is exactly where it is supposed to be at each moment in time. There's only forward movement and I can't look back on too much. Here's hoping this will work again... fingers crossed.