I was diagnosed with Lyme, but now it's a "false positive" says my GP

(I'm relatively new here. Live in BC Canada. Was very ill starting ~July 6/15. No ticks found, or bite, or rash. Blood test for Lyme through CDC was positive Aug. 7/15 & started 100mg doxy twice a day).

On Tuesday of last week (Aug. 25) I went to see my GP as there had been a cancellation. Therefore I did not have any of the research that I'd printed out, with me.

I wanted to discuss my continuing symptoms, the possibility of testing for co-infections, and putting me on more aggressive treatment.

My main symptoms were a headache I'd had for about a week at that point, without relenting much, and fatigue. I identified these as the same "feeling" of the symptoms I'd had pre-diagnosis.

My GP did not really want to discuss this stuff with me. He said I had a tension headache and gave me prescription anti-inflammatory and muscle relaxant. He didn't want to treat Lyme more aggressively (felt I'd already had adequate treatment) and said if I still had symptoms, it was chronic Lyme and he couldn't do much about that. He didn't want to test for co-infections. But said if I was concerned he could refer me to an infectious disease specialist (I confirmed that I wanted this). I felt that I would rather be over-reacting and treating than under-treating!!

On August 26, I went for an initial consult with an LLND. He agreed with my concerns, immediately put me on 200mg doxy twice a day, an anti-yeast and better probiotic. He took blood for the coinfection test through Igenex and sent it off right away ($700 later).

On August 27, 6pm, my GP phoned me while I was driving with some friends, going away for the weekend. He said he'd sent a long letter to the ID specialist, and that in fact, my "initial" Lyme test was positive but the confirmatory one wasn't, and therefore I don't have Lyme. They also both agreed that Lyme "isn't in your area", same with Babesia, which I'd asked about. They were considering if I had relapsing fever (also a tick-borne Borrelia). But in any event, I'd already been treated adequately.

End result: I am going for more bloodwork on Monday, for a new 'Lyme serology', plus testing for a few other things including syphilis and possibly HIV. I am NOT at-risk for those two, but evidently they are on the menu.

I didn't tell my GP about seeing the ND. I don't feel comfortable about it, but I'm not sure I trust my GP either. This is horrible.

I then contacted the ND and asked his opinion. He said, this happens, better to stay on the abx for the full course, we can re-consider as you get more results in. This was my gut feeling too!

Meanwhile, I went into my GP's office over a week ago and did an authorization to send me copies of my medical records from May to August. I still haven't got them. I'd like to know what the actual first and second Lyme test results were. I went online, where I can see some of my bloodwork, but only some results are available, so all I got was things like red blood cell counts, etc.

If anyone has any input, I'd love to hear it.
unefaune

It sounds like you had the two tiered test - first one is either Elisa or IFA and if it's positive they do a Western blot. So it sounds like you were positive on the first test but negative on the WB.

Lyme disease is definitely in your area.

The co-infection tests are even more unreliable than the Lyme tests...so don't be surprised if you don't get positive results.
So did you get the Igenex WB test done or just co-infections?

Do you mind me asking where you decided to get treatment? Did you go to the coast?

Thanks for both your responses!

Interestingly the pharmacist, when he saw the ND's name on the label, said "oh you're in good hands, he has several Lyme patients that come here."

But... "we don't have Lyme in our area."