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Posted 9/23/2014 4:17 PM (GMT -5)
I guess this is part of my denial phase, but I keep wondering what if everyone would test positive or IND on lyme specific bands? Of course, we wouldn't be testing without symptoms, so we likely all have Lyme or something going on. It seems every test posted is positive, or labeled negative but with IND bands of concern.

My brain is going into conspiracy theory mode thinking "What if nobody ever purely tested negative across the board, or at least on the Bb specific bands?"
Posted 9/23/2014 4:32 PM (GMT -5)
You have to remember that this is a Lyme forum - so all those here at least suspect having Lyme or another tick-borne infection.

Igenex specially trains their Lab techs, use a very specific medium to test with (which is why they have a higher rate of positives than other labs), and take the time they need to in order to perform the testing properly.

They have plenty that test negative, but those people don't usually come to a Lyme forum to post either. They move on with their life and see what it might be.

This denial is something many of us go through. I went into denial for years after I first realized that I had Lyme (please don't do that!!!) I even went through it on my second go-round! I kept thinking "Seriously?, how can this keep happening?" Even though I had a tick attach more than once and had plenty of mosquito bites and even had a run in with some fleas!

Some days it's just hard to wrap your head around the enormity of this.
Posted 9/23/2014 4:42 PM (GMT -5)
Some days it's just hard to wrap your head around the enormity of this.


^^^^ this exactly Traveler.

I've been researching symptoms like neuropathy and autoimmune disease and diets/treatments for a year. I've been researching Lyme for 6 months. Clearly my gut was onto something, and I'm glad I'm semi prepared to jump into this world. But yes, it's hard to accept it because it is so so enormous. Thank God for forums like this one.
Posted 9/23/2014 4:58 PM (GMT -5)
Just remember that once you accept it, you can begin to heal. That's what made the biggest impression on me each time I realized I had Lyme. It wasn't going to leave me alone until I beat the infection, and this time I was able to tell myself that I did it once & I can do it again!
Posted 9/23/2014 5:43 PM (GMT -5)
I just wanted to say... I tested TWICE for Lyme disease and both times they came back negative. I met someone who has been diagnosed with Lyme disease via an igenex western blot. And both times I tested it came back negative for both IGG and IGM. So people do test negative. However I tested positive for anaplasmosis and mycoplasma. And tested clinically for bartonella. I also believe I had Lyme symptoms as well since many symptoms I had were Lyme.

But keep in mind I have been battling the infection from 3 days post infection and got it from someone's tear. (I know people will argue against me and say but you had to have had a tick bite at some point in time, but this is the reality of how it happened) I got the 41 band ++ and the second test I did was 41 +. I got a 39 as IND both times. These is considered a "weakly positive test" by my LLMD. The testing is just used to support a clincial diagnosis.
Posted 9/23/2014 7:35 PM (GMT -5)
LymePickle I technically tested negative as well, but with IND on a couple Lyme specific bands and positives on other bands, so...negative but clinically not negative. Mine is similar to yours, positive on 41 and IND on 39, and I have IND on 34.

I'm just playing devil's advocate and trying to reconcile myself to becoming someone with a chronic illness that requires treatment and lifestyle changes.

It's just a tough time.
Thank you all for the support.
Posted 9/24/2014 11:41 AM (GMT -5)
Also, we must remember that even the best WB tests only look for 4 or 5 of the over 300 strains of Lyme Disease - so if you have one of the strains that isn't being tested for, then of course you will have a negative WB. This is why even on the CDC webpage for Lyme disease, they still say that it's a clinical diagnosis.
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