June 30, 2011

A Word About My Experience With Lyme Disease

Lyme disease is one tricky subject. For every one article, story or study, there is another countering its claims and providing another point of view. For my sanity, I'm recording my experience with the full and clear knowledge that it may not resemble anyone else's. But, maybe it will.

Getting bitten
As a dog owner I'm 100% terrified of ticks and Lyme disease. After having a beloved family dog die from it, I'm HYPER vigilant about checking Micky anytime we are in the woods or tall grass. Mother's day weekend I took Micky and my brother's dog Kenna for a walk in the woods, then promptly brushed and checked them all over upon our return. Perhaps I should have done the same for myself.

I will say this in terms of prevention. I wore long sleeves, long pants, socks and shoes. What I now know is that I should have tucked my pants into my socks. Because somehow either in the woods/grass or after, I ended up with three ticks on my leg for 24 hours. Two wood ticks and one deer tick. Man alive, are deer ticks tiny.

The ticks labeled A, B and C are various stages/gender wood ticks. Easier to see for sure. The ones labeled D, E, F, G, H are various stages/gender of deer ticks. Tiny little shits. From here.

After finding the ticks, I kept an eye on my leg for several weeks to see if the telltale red bullseye rash would appear. It did not.

My symptoms
What did appear about three weeks later was fatigue. During my regular workouts I started noticing I had less energy and drive. Usually working out gives me energy, instead I started to feel like it was being leached out of me every time I worked out. The following week I noticed in the mirror at work the glands around my neck looked swollen. Also that week I began having a lot of soreness in my joints, specifically my shoulders, knees and elbows. I was super tired each night. But, still no bullseye.

Things I blamed these symptoms on:
  • If I had a day where I didn't eat as well or fuel my body
  • Emotions (my grandfather died during this time period)
  • Change of seasons (Spring)
The real kicker came about five weeks to the day I was bitten. I was talking to someone at work and all of a sudden felt like I was going to pass out. For several days afterwards, I felt like I had the drunk spins. I never knew when it would hit, but it felt like there was a mini tornado inside my body. Oddly enough, the tornado was on an angle. Like a bunch of hula hoops were twisting around inside my on a roughly 75 degree angle. It sucked.

One other thing I'll say about the hula hoop/tornado time period, that was when food really started to become a problem. Eating made me feel awful. Another yucky symptom I had that week and during the first week of treatment was the feeling that my tongue had been burned. An icky sensation. Very distracting.

I went to the doctor after a Sunday that had me sleeping in until 10, taking a three hour nap and then going to bed at my normal time with no repercussions from all the extra sleep. Very unlike me. I also went to the doctor that day because I felt like hell.

Here's where things get tricky. Lyme disease doesn't always show up in bloodwork. It especially does not show up in early stages. If you got bit on a Friday and went to the doctor on Monday, you wouldn't have much to show except knowing you had been bitten.

Per my doctor, my symptoms and the fact that I had a deer tick on me for 24 hours, she felt safe treating me for Lyme disease without a blood test. There's a lot of theories on this. Given how awful I felt and how many of the symptoms I had, I felt comfortable getting on the medication. I did, however, have a blood test before starting it, which ended up showing as negative for Lyme disease.

And re: the bullseye. According to my doctor, only about 40% of people who have Lyme disease get it.

After three weeks of antibiotics (finished yesterday, woot woot!), whether it was Lyme disease or one of its related diseases, I feel 1,000 times better. It was an exhausting ordeal and a physical kind of chronic hurt I'd never felt before.

With this medication and kind of bacterial infection, you definitely feel worse before you feel better. The first few days of medication made me feel like I was on a roller coaster. Since it is a disease that spirals through your blood stream, the medication spirals out after it. I also rested and did absolutely nothing besides work, sleep and rest on the couch for the first week.

My story
I can only speak to my experience. As a woman, I'm pretty in tune with myself, my body and how I feel. That's how I knew something was wrong. This wasn't just fatigue or emotional exhaustion. That said, not all ticks result in Lyme disease. If you have one on you for an hour, you don't need to freak. But, when one's had a chance to nibble on you for 24 hours, pay attention.

The thing I really learned is damn, deer ticks are tiny. Like the size of a sesame seed. So watch out my friends. Check yourselves before you wreck yourselves.


Ole Gustafsven said...

Thanks for that. I have tick avoidance tip that I always like to pass. Wear a collared shirt. I think that's why collars exist in the first place. A hat is a huge help too.

One time, camping up north, we paddled up to an awesome campsite. The 'living room' (aka campfire area) was under huge pine tree on a rocky point on a lake. While sitting around, we started seeing ticks on the ground. Eventually, we noticed they were raining on us from above. A really learned that wood ticks aren't so bad after that, strangely enough.

Trust my on the collar though.

camby said...

I'm glad you are feeling better! We're about to head to the lake for a week. Talk about tick checks...