3 Things You May Never Have Had (But Still Have Lyme Disease)

Last week I wrote a post on 5 things that may be clues you have Lyme disease. This week I’m coming at it from the opposite direction and talking about 3 things you may never have had (but still have Lyme disease). There are so many misconceptions around Lyme disease, including its diagnosis and treatment, and some of the historical factors. So read on for these 3 things and let’s try to clear some of it up.

1. Memory of a tick bite
   Many people who have Lyme cannot recall a tick bite. While textbook definitions of Lyme quote a tick bite as the only known mode of transmission, we do know that people have been infected by other critters such as fleas, mosquitos, lice and mites. There is also sexual transmission and congenital transmission to consider.

   But back to the ticks, even if one was bitten by a tick, the ticks that tend to transmit Lyme are the nymph ticks, which are the size of a poppy seed. Furthermore, ticks gravitate towards areas that are dark and safe for them, such as in the scalp, or in skin folds. So one may easily have been bitten and not have seen it at all. I would say about 1/2 of my patients have no recollection of a tick bite, but very definitely have Lyme.

2. A bull’s eye rash

   The classic Lyme rash is called erythema migrans, aka EM rash or the bull’s eye rash. It is a round ring, with a central clearing, appearing as a target shape. While a bull’s eye is a sign of Lyme disease, the non-appearance of a bull’s eye rash does not rule out Lyme disease.

   Again, things can get confusing. I have some patients who do recall a rash, but was told at the time it was ringworm, or a spider bite, or something else altogether. Misdiagnosis is common. But do not think that just because you never had a rash, you couldn’t possibly have Lyme disease.

3. A positive lab result

   Ok, now I’m really going back on what I said last week in my “5 clues you have Lyme disease” post. In that post I said that a positive Lyme test is an indicator of having Lyme disease (despite what many doctors try to tell you). What I’m saying today is equally true in my mind – not having a positive Lyme test does not rule out Lyme disease. Trust me, it’s not that we’re inadvertently trying to diagnose everyone with Lyme, that’s not it at all. But often Lyme, especially when chronic, does not show up on antibody tests on Western blots. This is largely because Borrelia suppresses immune function, and the labs are measuring immune responses. So we have a lab test measuring an immune response to a bacteria that suppresses immune response. You can see the problem here. Therefore, diagnosis must be carefully made based on a number of factors, including history (where one grew up, lifestyle factors such as frequent camping or hiking trips etc); clinical presentation (meaning the constellation of signs and symptoms) as well as lab findings. Lab results alone can be misleading.

   Very few things about Lyme disease follow clear textbook definitions and descriptions. Many doctors are not aware of this, and subsequently may miss a diagnosis because they’re looking to check the boxes of at least one of these factors, sometimes all of them. Again, I encourage you, if you think you might be impacted by Lyme, to seek out a Lyme-literate practitioner for a comprehensive evaluation.