How Did You Contract Lyme Disease?

For many people, contracting lyme disease can be something that goes like this:
Scenario 1: 
Hey, let's go outside, maybe for a hike, or a swim in a lake, or hang out in a generally wooded area. Sure, sounds good!
Later that day they discover a tick attached to their body. If this is their first tick bite, and it is after the early 90s, they will immediately freak out, but then figure out how to detach it safely, and then go to their doctor. If you save the tick, you can sometimes confirm lyme, sometimes not. If you go on to the "watchful waiting" stage, you will wait to see if a bullseye rash appears near the bite site. Some doctors in endemic and epidemic areas will immediately put you on a course of antibiotics and the young disease will be on it's way out of your body, with nary a symptom.

For other people, contracting lyme disease can be something like this:
Scenario 2:  
Hey, let's go outside, maybe for a hike, or a swim in a lake, or hang out in a generally wooded area. Sure, sounds good!

Later that day, no one discovers a tick attached to their body. They don't recall a bite at all but they do develop some cold-like symptoms and a strange rash that doesn't resemble a bulls-eye at all. If you live in an endemic or epidemic region, a very good family physician will do a tick interview, asking if you've been outside, how long ago, symptom onset, etc. If they do indeed figure out that it is lyme disease, they will also put you on a .course of antibiotics. Could be a bit longer depending on how long ago the alleged bite happened. 
Scenario 3: 
Or, later that day no one discovers a tick attached to their body. They don't recall a bite at all. And they don't develop any symptoms at all for many weeks or months. As long as this person sees the right kind of doctor at this stage, it can still be a few courses of antibiotics and you will be on your way without another thought.
People in this scenario have likely been bit by the nymph form of the tick. It is the size of a poppy seed, and can hide in hair, on necks, inside socks, and wherever they land they will crawl up. These tiny little devils also carry some of the most potent and active forms of the lyme spirochete (spear-oh-keet, more on that later). Because they are so small, they are able to go unnoticed for the full 36 hours it takes to complete the transfer of lyme to the host. and then they fall off and go on to infect another unsuspecting host. 
Alright already, but how did YOU contract the disease?

My exposure to ticks began around the age of 3 when my paternal grandparents bought a cabin in the Lake of the Ozarks in southern Missouri. It needed a LOT of work so we were down at the lake almost every weekend during the summers, swimming or hiking or going out on the little fishing boat.

Anyone knows that in back woods Missouri in the late 70s, ticks were just a part of everyday life, and we checked a lot. We knew how to remove them cleanly and leave no residue. It was just something you do, like putting calamine lotion on a mosquito bite.  (I will reference why there was no tick hysteria until the 1990s in my next post).

My family and I can recall being bit by adult ticks that had to be removed from me over a dozen times. And that is just the ones we know about. I never had a rash. Never immediate symptoms. We were down there for years, and I can tell you that not only was I bit multiple times, I was also infected at least twice. I will post my health decline and how it manifested throughout my life in another post. But for me when I wrote out my entire health history, there was a clear line between Kindergarten and
First grade. My immune system was weak and I would ALWAYS get sick more than anyone in the class. I also started having horrible headaches. The district wasn't sure that they would let me move on to the next grade because I was out so much.... Until they saw my grades and instead put me in the gifted program. At least it didn't go for my brain first!

At this point no one knows anything about lyme disease or its diagnosis. I will explain that in the next two posts about the history of lyme and the progression of the disease in my body.

For now, me and my joint pain, eye patch/double vision, and my afternoon cognitive impairment must be going. If you've gotten this far, please let me know of any questions you have that you would like answered either in comments or as a complete post. Talking about it and education people about it through the complicated and messy world of advanced late stage lyme is the only way to get my story out there. My biggest hope with this blob and other forms of outreach that we really can raise the money it will take to eradicate this disease from my body. The price tag for that is around $90,000. Share this at will.


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About Me

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Seattle, WA, United States
I was recently diagnosed with late stage lyme disease along with other tick borne diseases, which I have had for 30 years. Now begins the fight.