Something you guys may or may not know about me: I have Lyme Disease. May is Lyme Disease Awareness Month, so I figured I would do a lime-colored look and tell you guys a little bit about my journey with Lyme.
Lyme is a tick-borne illness, although the scary thing is that it’s not as common as you think that you know you got a tick bite. For example, I have absolutely no idea when I was bitten. That makes treatment tough, if you can’t pinpoint when you might have contracted it. So, I really have no concrete time when I could have gotten it.
I did a race in north GA one spring about 4 years ago, which is the best guess I had, but it’s impossible to know, really. Lyme can lie dormant in your system for a long time, so there’s really no telling. I lived in New England when I was little, so I could have gotten it then.
In 2011 after my race, I had started to feel sick constantly. At first, I thought I was pregnant. My main symptoms were constant-nausea, exhaustion, and mood swings. This is interesting, because a lot of people have intense joint pain as a main symptom, and I had some, but it was really pretty minor.
After many tests, trying to figure out what was wrong, I was finally tested for Lyme, and in GA, doctors aren’t very familiar with it, so the fact that the Dr thought to test me for it was pretty amazing.
So, since I had it, I went through the standard treatment (10 days on antibiotic). I was referred to an Infectious Disease-specialist doctor who told me that after that treatment, I shouldn’t worry about whether or not it was gone. He said that if you treat it with the antibiotics, it wouldn’t come back.
Just in case you need to know, it’s flat out wrong.
If you don’t treat Lyme aggressively when you first get it, then it can become Chronic Lyme, which is MUCH worse. In fact, if you have Chronic Lyme, it can take years to fully treat, if it ever even gets fully better!
Skip ahead to 2014, and in the spring, I start feeling sick again. Same thing. Thought I was pregnant: constant nausea, headaches, extreme exhaustion, mood swings, some cognitive issues (confusion, mental fogginess – I even got into a minor car accident because of the cognitive stuff!). Again, not pregnant. Went back to the Dr. (a different one this time). They re-tested me after I asked them to. Lyme was positive (well, at least as positive as you can get with the tests – they aren’t very good tests).
So, this GP referred to me to another Infectious Disease specialist. This guy was total asshole. Seriously, I have never been to such a pig-headed doctor.
He said that I did NOT have Lyme. That it wasn’t even possible. He said that Lyme didn’t exist in Georgia, so therefore, it was impossible for me to have it.
He tested me for a ton of different other things he thought it could be, but it all came back normal. He really did test for 20-30 other things he thought it might be, all of them fine. I think he thought I was faking it, which is something that happens to Lymies all the time, unfortunately.
So, he told me to come back in 6 months if I was still feeling poorly.
Seriously. That’s what he told me. That wasn’t a good enough answer for me.
He said it wasn’t Lyme, but all of his arguing about how it wasn’t possible didn’t convince me.
So, I did some research, got a referral through a well-respected Lyme association for a LLMD (Lyme-Literate MD) and found my current doctor. I don’t want to give any details on her, since it’s a very sensitive political issue. If you haven’t seen it, watch Under Our Skin (you can find it on YouTube!), an amazing documentary that outlines all of the political nonsense surrounding Lyme.
My doctor, though, has made all the difference. Finally someone doesn’t treat me like I’m crazy. Finally someone listens to me. Finally someone knows the difference in whether I have Lyme or not Finally someone thinks about what co-infections go along with Lyme and treats me for those too.
Without her, I would still be sick.
Over a year later, I’m finally feeling better.
I am currently waiting for some test results where they try to grow the Lyme bacteria in your blood. If it doesn’t grow, then you can officially know you are Lyme-free.
Anyway, that’s my personal Lyme story.
To be honest, if you know anything about Lyme or research it, you’ll see that my story isn’t uncommon. In fact, I had it really lucky. I only had to go through 4 doctors to finally find someone who would treat me. Someone who wouldn’t think I was crazy. Or someone who wasn’t going to just say “Oh, you have chronic fatigue – deal with it,” which happens a lot actually. Lyme is often misdiagnosed. Doctors often just don’t think to test for it. Or when they do, they don’t treat it thoroughly enough.
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