Here's What I Remember (And What I Don't)

Posted by Nikki DiSalvo on

I don't remember ever finding a tick on myself or having the notorious erythema migrans rash--the "bull's eye" rash that most people associate with Lyme Disease, including many doctors. It's actually not surprising that I never found that supposed hallmark though, because an estimated 40-70% of people with Lyme don't recall ever having a rash! 

There are a multitude of reasons why the range is so large, including generally skewed data in individual studies (such as the CDC often citing data from surveillance cases, which use a rash as one of the criteria for surveillance, so obviously the people they are looking at would have a higher rate of rash reporting) and the fact that there are differences from state to state in the number of people reporting a rash. A rash is not always present and even when it is, there's no guarantee that it is going to be found. Ticks can be really tiny little buggers, smaller than a poppy seed when in their larval form. They release a small amount of anesthetic when they bite, making it even harder to know you've been bitten. So if you get a tick bite on say, your back or behind your knee, you may or may not get a rash and if it is there you might not even see it.

Sorry guys, I know some people hate to see these images, but I think it's important information!

Although I never found a tick or rash on myself, I did pull a tick off the head of a little girl I was nannying for about 5 years ago. Gross doesn't even begin to describe that experience. While brushing her hair I felt a weird lump on the back of her head. The tick was so engorged I don't even know how I recognized it. After a cursory internet search I kind of-sort of figured out how to remove it and somehow I got it out in one piece. Pure luck I think, because I really didn't know what I was doing. I put it in a jar and made a doctor's appointment for her right away. If I remember correctly they put her on a few days of antibiotics and said not to worry about it, that the antibiotics were just a precaution. As far as I know she hasn't displayed any symptoms of Lyme Disease.

A few months later I got sick and my health has never been the same since. I got what seemed to be a really bad persistent cold. I was sick on and off for about a month with fevers, a cough, all kinds of congestion, headaches, earaches, and I lost my voice a couple times for a few days each time. I probably would have had a sore throat too, but happily I had my tonsils removed when I was 19. It felt like the illness took forever to get over and the ear problems that developed during this time have never gone away. I remember having so much pain and clogging in my ears, going to the grocery store and having one of the employees ask if they could help me find anything. I did need help, but I couldn't hold a conversation because I couldn't even hear myself talking, so I got completely flustered and basically ran away! How embarrassing. 

After dealing with this for a few months I decided to see an Otolaryngologist (ear, nose and throat doctor). The appointment lasted all of five minutes. He stuck a finger in my mouth, pressed on the back of my jaw from the inside, asked if it hurt (it did) and told me that meant I had TMJ Disorder. He was the first in a long line of doctors to give me an answer that only lead to more questions and no solution. My dentist agreed that I could have TMJD but he didn't see any evidence of a misaligned jaw or any of the other things that usually cause issues with the temporomandibular joint. I stopped chewing gum, went on a soft food diet, and tried to be mindful of how wide I opened my mouth when eating or yawning. Nothing alleviated the issues I was having. Even when more symptoms began to emerge--bigger much weirder symptoms--I held onto the idea that maybe TMJD was causing all of my problems. 

Around this time I started going back to school and also started getting headaches and visual disturbances. The headaches that developed were unlike any I had experienced before. They came in a few different flavors, probably the most common back then were the ones I called "headband" headaches (the pain felt like it was right where a headband would sit on my head--not that I can actually get a headband to stay on my strange tiny skull). I also started having flashes of light, like little blue or white sparks, in my visual field. I noticed that some types of light made my headaches and the visual problems worse, especially florescent lighting. I attributed all of these problems to the TMJD and maybe stress and excitement from starting classes. At that time I could still fool myself into thinking that everything I was experiencing fell into some range of normal. 

Note how none of these things I've described are the "typical" Lyme Disease symptoms that most people think of. With the exception maybe of the fevers I got that first month and the headaches, none of my symptoms lined up with what is commonly expected of someone with Lyme Disease. I still have headaches and visual disturbances, but they've evolved and mutated, becoming much harder to deal with. Of course I also developed a whole slew of other symptoms and started having issues that sent me to the emergency room on several occasions, but I'll save all that fun stuff for my next post. 

Be Well,