How common are 'false positive' (are they really false)?

I was hoping someone could point me in the direction of studies showing how often diagnostic tests for Lyme disease come back positive in people who are not ill (test 'controls'). I ask this because I have been wondering if this infection could actually be more common (at least in certain areas), but only cause serious reactions in a subset of those infected due to differences in the immune system or perhaps due to syndemic effects. That is, is it possible that 'false positives' (which, from what I've read, are rather common) actually *aren't* 'false' positives, rather that some people do in fact have this bacteria in their system but for some reason do not have serious negative effects due to it? It's hard to imagine that no one would think to study control populations, but Lyme disease seems very (pathetically) poorly studied in general (which is surprising to me given the geographic range of the disease). Perhaps instead of trying to figure out how to kill Lyme, figuring out why some people don't get seriously ill from it might be better goal.

I ask this because I only recently, by chance, came across photos of the Lyme rash. It seems from what I've read that, if noticed, the first course of action is to slam the person with heavy antibiotics for about a month. Well, I for sure had this when I was 9 or 10 but never went to the hospital for it - it cleared up so we didn't bother seeing a doctor (and no one recognized what it was). Never got a fever or aches or anything else, just a few 3-6 inch bull's-eyes that cleared up after about 2 weeks. I live in MA and grew up playing out in the woods like every other kid in the 80's where I lived, and it's really hard for me to believe that it was rare to get bit by infected ticks out there (my back yard was literally grass, dirt, trees, ticks, and deer) - if people always had the severe reaction that is claimed half my state would be incapacitated (although I guess the general level of functionality here is debatable). It seems to me that it'd be more credible to think that (at least in the northeast) that the infection is similar to something like toxoplasmosis - a decent number of people have some level of infection, but only a subset get seriously ill. Have tests *actually* been done that prove otherwise?

In any case, rushing to the doctor to have everything in my own little personal biome eradicated (despite not feeling ill) because I realized I had this rash 25 years ago seems...well really stupid, but there must be some reason I didn't get sick - I'm just not sure if I was / am just really lucky, or if this might actually be the usual and medicine just needs to drop the 'if it's too small to see we don't need to bother learning how it works' attitude.

I totally understand what you are saying. I am of the belief that this illness is a lot more complex than the medical profession gives it credit for. I wonder all the time when exactly I got bit, did I get bit again, do people who think they get bit again just come out with symptoms again, is lyme the cause of MS and many other illnesses meaning that the many false negatives are dangerously low, why are entire families infected, etc. Until this disease gets the proper recognition and research needed, we won't know these answers.

Hi Araella!
Welcome to our little spot! I am sorry that you have to even consider that you could have to deal with this disease.

I have been active on this forum for about 4 1/2 years now, and before and during that time, I have been doing my own little research into these infections. The best source of scientific information that I have found is "Google Scholar".

As for what I can tell you based on what I've been reading - there is a much higher rate of infection than what is being claimed - and there is plenty of evidence for this claim. There is a lot of info on this on another great website - lymedisease.org and on this one - www.lymeinfo.net/articles.html

These infections are also well known to stay 'under the radar' and only come out when the body's functionality is being compromised due to stress. Lots of us here have had these relapses until we finally discovered what we were dealing with and sought out treatment.

You are right - these infections are far from being rare!! That's what the Infectious Disease Society of America (IDSA) wants us to believe, but it's just not true! Just hang around this one site, and count the numbers of new members we can get in just one month! That's just the tip of the ice burg, as we are only one small group - there are a whole ton of support sites for those with Lyme and/or other tick-borne infections!!

There are just too many studies to point out here, but are a couple to get you started.
www.canlyme.com/labtests.html This is written by a Micro Biologist named Tom Grier.

www.anapsid.org/lyme/lymeseroneg.html

More information can all easily be found by 'googling' certain terms like "infection rates of Lyme" or "rates of false negatives, false positives in Lyme". If you don't find enough or the right results, I would highly suggest that you use Google Scholar. This is a search engine that is designed to specifically find things like scientific studies and patents and other things that may not normally come up in a general search on Google or Yahoo or whatever.

Unfortunately even our own CDC takes the side of the IDSA, and supports their false claims. Please see this article for further info:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/ So you will need to read carefully and watch who the Researchers are to understand from which side they are seeing things.

I hope this helps some! If not, maybe you could narrow down your questions so that aren't so broad? We do like to help people get the right information!!!

It's quite possible that your immune system was operating at a high enough level that it took care of things. I do have to say that there is no other disease or condition that creates a bull's eye rash though, and if the bacteria isn't gotten rid of, the body will succumb to the effects of the disease. I personally have 'lost' three different organs, and have many other issues due to the bacteria doing their thing unchecked in my body for over 4 decades. I was infected at the ripe age of 7 the first time.

So not treating isn't the best advice - if there is a bull's eye rash we always recommend that that person get in to receive treatment, because most can't fight off the infection. Personally, I think it has to do with genes, but it's just a guess. If a person starts on strong, yet appropriate doses of abx, it's highly likely that the infection won't spread into the rest of the body - as I said, most people's body can't fight this infection off on it's own -obvious by the infection rates around the world.

As for the abx - there are many of us that are having great results treating with herbs and other natural treatments, so there's alternatives.

I'm so glad that you made it out without the infection spreading like it does for most. With that being said though, should you begin to feel ill and there seems to be no explanation for it, or if you have another Bull's eye rash, please don't wait around to see what's going to happen. These infections can be truly devastating for most, and could be for you next time.

It's really so confusing and the answers out there suck. I was bitten by a tick when I was a kid. I found it imbedded in my leg.

I did not show symptoms until I was 28 when I started having panic attacks. Of course I didn't know it was Lyme...I'm still not convinced because I took Paxil and got it under controll.

Several years later I had a baby and had 3 years of post partum depression, but it wasn't just depression. It was the weirdest sensations and anxiety I ever knew. There began the brain fog and I had terrible sciatic and sacral pain. I sought out acupuncture and thing improved.

Now only recenty, with the onset of extreme anxiety, depression and (this is new) OCD, and these terrible stomach problems has the my ND put it together that it could be Lyme. My cd 57 was 29 indicating an active infection I don't know if I've had it since I was a kid and fought it off. Maybe that tick wasn't infected and I was recently bitten. Or maybe my husband gave it ti me? He found a tick in his armpit 10 years ago in Yosemite and got very sick for 3 days. Those were the only symptoms he ever showed. He is the most energetic and positive guy I know. He also has had numerous chigger bites...they're nasty! So why doesn't he show symptoms and I now am?