Equivocal Lyme Results

[FastHands]

Yes, I just had a friend go through this. The tests are not perfect, and there can sometimes be "background," so there are ranges. The lowest range means it's negative. The "equivocal" range means it's kind of between the background noise range and the definitively-positive range. People in this range should be retested using a more sensitive assay.

[FastHands]

Jun 16, 2014 9:21:42 GMT -5 carrotsmakemefat said:

Jun 16, 2014 9:15:16 GMT -5 FastHands said:

Yes, I just had a friend go through this. The tests are not perfect, and there can sometimes be "background," so there are ranges. The lowest range means it's negative. The "equivocal" range means it's kind of between the background noise range and the definitively-positive range. People in this range should be retested using a more sensitive assay.

Interesting. My result was a .91. And from the chart it appears that a .91 can be negative and the beginning of equivocal. So I'm NOT in that mid range at all if they are looking for above .91

I would assume that they aim to be somewhat conservative with the cutoff values (meaning that they would rather people get retested who don't need it than not retest someone who needs it), so I would assume that you are probably truly negative. That said, though, I will say that my friend tested borderline between equivocal and positive and still had to really fight to get retested. So while I understand wanting to stay away from google, if you are having symptoms that made them suspect Lyme enough to test for it and you can't find any other reasonable causes, you may want to push for the more sensitive test if just for peace of mind.

[castle281]

This is FastHands friend (and a lurker) chiming in. I had equivocal results and had to fight with my doc to get the second stage test done, which ended up coming back positive. This was after 6 different doctors and 6+ months of trying to figure out what the hell was wrong with me. If your doctor offers to do the second stage test, definitely take them up on it. It's really hard to get a Lyme Disease diagnosis, so those of us lucky enough to get a positive or equivocal on the first stage test should jump at the opportunity for the 2nd test. A lot of people don't even get a positive or equivocal the first time around.

FWIW, the first stage test can also test positive or equivocal because of other types of infections so it's worth asking your doctor what else might be causing it if you come back negative on the 2nd test.

[castle281]

Jun 16, 2014 9:30:44 GMT -5 carrotsmakemefat said:

Damn. I've thought my symptoms could be so many things. Honestly. And if it comes back as Lyme I will officially be "mind blown." I have the symptoms, but my symptoms also present as a bunch of other things. My CRP has been high for 4+ years with no real answers either.

I sent a note to the neurologist on the patient portal, and the PCP. I'm interested to see what they say. If nothing else I wanted them to have my work # to reach me during the day since the nurse said they'd be calling.

This was me. I had a wide range of symptoms that overlapped with many other things, and Lyme Disease wasn't on my radar at all. I've been on antibiotics for a little over a week and I'm starting to see small improvements.

[Deleted]

Do you know which test was run? ELISA and Western Blot are notorious for being incorrect. IGeneX is considered the most sensitive one you can get currently. I would definitely go and seek a second opinion.

[castle281]

Jun 16, 2014 10:46:32 GMT -5 @scottydeux said:

Jun 16, 2014 9:21:42 GMT -5 carrotsmakemefat said:

Interesting. My result was a .91. And from the chart it appears that a .91 can be negative and the beginning of equivocal. So I'm NOT in that mid range at all if they are looking for above .91

My result was a .7 on that test and I have Lyme. That was a test given by my neuro who doesn't believe in LLMDs. It really depends on how hard you want to press the issue/how sick you are.

I was a 1.08 (so on the high end of equivocal) and my doctor didn't want to run the Western Blot. He wanted to put me on ADs instead, even though he had suggested the Lyme Disease test in the first place. I had to go to another doctor and insist on the test.

[castle281]

Jun 16, 2014 11:02:43 GMT -5 carrotsmakemefat said:

It was a regular blood test. Lyme IgA I think ? Just waiting for the doc to call or mail me on the portal.

It sounds like you may not even be in the position to have to fight...yet. But push for the second test if your doctor doesn't want to run it.

To Scottydeux's point, there are people who don't test positive on the WB that have Lyme, and the Igenex lab may be the route to go, but generally, LLMDs and Igenex don't take insurance, so you'd be out of pocket. It's worth having it run through a mainstream lab if your doctor agrees to test you and it won't cost you much with insurance.

Based on the research I'd done (and a lot of what I'd read on this board), if my WB had come back negative my next step was to go to an LLMD and test through Igenex.

[keyslover]

Find an LLMD.

Lyme is treatable, it may take time. But you know what you are fighting.

On my phone, will add more on computer.

[krisandgrace]

Jun 16, 2014 10:46:32 GMT -5 @scottydeux said:

Jun 16, 2014 9:21:42 GMT -5 carrotsmakemefat said:

Interesting. My result was a .91. And from the chart it appears that a .91 can be negative and the beginning of equivocal. So I'm NOT in that mid range at all if they are looking for above .91

My result was a .7 on that test and I have Lyme. That was a test given by my neuro who doesn't believe in LLMDs. It really depends on how hard you want to press the issue/how sick you are.

DH had Lyme for almost a year before he got a positive test.  His primary care refused to put him on antibiotics with out a positive so we found a LLMD. By the time he did he had dizziness so bad he would have failed a field sobriety test, his first doctor thought he was depressed. :^)

[castle281]

Jun 16, 2014 11:35:59 GMT -5 carrotsmakemefat said:

So how do you treat Lyme anyway? I've known two people who had it. Both seem to be totally normal now (in fact one just had a second kid, after a diagnosis maybe 3 years ago)

The first step is antibiotics. For some people one round is enough, but for others it's not. Then there are other courses of treatment that others here can explain far better than I can.

My doc started me on one month's worth of antibiotics.

[castle281]

Jun 16, 2014 13:27:04 GMT -5 carrotsmakemefat said:

Ok now I'm curious why Lyme is such a disputed disease in the medical community. Looking up LLMDs is weird...I'm getting weird results I mean

I watched the documentary recommended here (Under Our Skin) which talks a lot about the disagreement in the medical community. I definitely recommend it.

When I started looking up LLMDs I found that I wasn't going to be able to get a name off the internet. You're going to have to post on a forum and someone will send you a PM with names in your state. There aren't many where I am in FL and I ended up going to a "Lyme friendly" GP whose name someone PMd me instead.