I’ve been living with Lyme Disease for awhile now.
So I thought I’d give you an update on what things are like after some time has passed since the day I received my Lyme Disease diagnosis…
What It’s Like Living With Lyme Disease
Just over 1 year since I was diagnosed, I began to experience regular daily symptoms that were attributed to the Lyme Disease.
So I had a full year of virtually no symptoms at all — except for those initial aches, pains, and swollen joints when I was first diagnosed.
While I got a clean bill of health at my annual checkup 1 year after the Lyme Disease diagnosis, the doctor told me that I have Reactive Arthritis now.
At first, the Reactive Arthritis (also known as Reiter’s Syndrome) only showed itself whenever my immune system was compromised (like when I had the flu last month). Then, it would go away after a couple of days. But now, it’s a daily occurrence. In fact, it never really left after I had that last bout with the flu a month ago.
So now my mornings are started with very stiff ankles and joints. Most noticeable: the middle/top portion of the bottoms of my feet (near the arches) feel extremely tense, tight, and sore. They will not bend at all — until I’ve walked around for a bit. And still, my walking is never really pain free — especially when barefoot.
Beyond that, I have constantly achy elbows pretty much 24/7. Or rather, it’s more like the muscles in my arm near my elbows are incredibly sore — for no reason at all. I haven’t done any heavy lifting or anything. And they never feel better, not even with Ibuprofen.
The same neck pain that I experienced back when I was first diagnosed is back as a constant dull pain now.
I haven’t explored any treatment for the reactive arthritis yet. And I’m not taking any meds other than Ibuprofen as needed these days (which is a lot — usually 800 mg every 4 to 6 hours).
My Previous Tick Bites
For the record, I have received a ton of tick bites (more than 30) in each of the states that I’ve lived in — except for Indiana and Ohio. (But I only lived in Ohio and Indiana as a child many many years ago.)
Check out this list of Reported Lyme Disease Cases.
The reason I’ve had so many tick bites over the course of so many years is because I spend a great deal of time outdoors… in the woods… with lots of camping… and hiking.
Plus, I’ve always had dogs at the same time — and each of my dogs has had their fair share of ticks that I’ve promptly plucked from their fur.
Of course, most of the time, the ticks were at least slightly embedded into my skin, or my dog’s skin. So tweezers were required to remove them — and you never really know if you’ve gotten the tick’s entire head out or not. Plus, the venom (or infected saliva) is probably already in your system at that point anyway.
Specifically with regard to Nashville, Tennessee… Jim and I have each gotten about 2 dozen ticks on us each and every year that we’ve lived in Tennessee — 7 years now. We camp, we hike, and we venture into the woods a lot. Plus, we’re building a log home in the woods — and we’ve come back several times loaded with ticks. That is, until we started using Permethrin last summer. (Good news: since then, we haven’t found any ticks on us… not a single one!)
Unfortunately, our dogs usually come back with a tick or two (or 35!), after long days in the woods. This, despite the fact that we keep them on both Frontline and Heartgard — for ticks, fleas, and heartworm preventatives.
So, needless to say, I wasn’t the least bit surprised to learn that I have Lyme Disease.
Unfortunately, I’ve had so many tick bites in my lifetime, it’s hard to say which ONE might have caused the symptoms to appear.
I Had The Lyme Disease Rash, Too
It just so happened that I took a picture of one particular rash that appeared a couple days after a tick bite 2 years ago. (At the time, I didn’t realize it was a rather serious rash from a tick bite — though I obviously felt it was unusual enough to take a picture of.)
My rash looked like the 3rd and 4th ones from the top, pictured here. (My Lyme Disease rash was in a place that can’t be shared in a photo on the Internet — right between the crease at the top of my thigh and the groin area.)
About 60% of light-skinned patients notice a unique enlarging rash, referred to as erythema migrans (EM), days to weeks after the bite. On dark-skinned people, this rash resembles a bruise. Source
That’s the only time I can remember getting a rash after a tick bite. In the past, my tick bites would just itch and turn red. No big deal. But this time it turned into a full-blown rash — and you could “feel” the fever in it.
The photo from the tick bite that led to my rash was taken in June of 2006. They say that Lyme Disease shows itself many months, if not years, after the actual tick bite. So I guess this could be true in my case — as it has been nearly 2 years since that tick bite (and that Lyme Disease rash) occurred. So I guess I’d been living with Lyme Disease in my body for about 2 years prior to my diagnosis.
Did you know that Lyme Disease isn’t the only serious disease you can get from a tick bite? Here’s a list of all tick-borne diseases.
Lyme Disease Doctors In Nashville Tennessee
The 2 questions I get asked the most when people find out I’m living with Lyme Disease in Nashville Tennessee are:
- “Have you found anyone who is knowledgeable about Lyme Disease in Nashville?”
- “Can you recommend any Lyme Disease doctors in Tennessee?”
My reply (since I haven’t sought any additional treatment since my diagnosis) is: “Unfortunately, no.”
However, I am keeping my ears open if I should happen to hear Lyme Disease mentioned locally. And I’m watching the comments to this post for doctor recommendations made by others — because I know that someday in the future I will probably need a Lyme Disease specialist. (Trust me, if and when I do personally visit a Lyme Disease doctor, I will post another update right here.)
I know that I happen to be one of the lucky ones who isn’t struggling too much while working and living with Lyme Disease.
My symptoms are much less severe than others whose stories I’ve heard. But like I said earlier, no 2 people will have the same experience with Lyme Disease. It’s different for everyone. So I continue to count my blessings, and I deal with the aches and pains to the best of my ability — without letting them slow me down (much).
Did You Know There’s A Movie About Lyme Disease?
I will say this, for what it’s worth…
The movie Under Our Skin had a huge impact on me.
It validated a lot of the concerns that I had about Lyme Disease. It sort of gave a face to the disease — for me. Or rather, it gave me several very vivid examples of people living with Lyme Disease that are now ingrained in my memory.
I count my blessings every day and I consider myself extremely lucky that my symptoms are nowhere near the severity of those whose lives are profiled in the movie.
One takeaway for me is the fact that several Lyme Disease doctors and specialists are mentioned (by name and city) in this movie. Some are probably no longer practicing, and others may not be available for new patients — but if I needed a Lyme Disease doctor tomorrow, I would re-watch that movie with pen and paper in hand and jot down the names of each of those specialists!
I think that might be a good starting point. I would begin by researching the individual doctors’ names online and/or the name of their offices. Then, who knows, maybe a phone call to some of them could actually lead to helpful information or a specialist who can help here in Nashville Tennessee.
Here’s the movie trailer for Under Our Skin:
(I watched the movie Under Our Skin on Netflix streaming. If you have Netflix, I highly recommend it.)
Fellow Nashvillians Who Have Lyme Disease
So I thought it might be interesting if I could find other people near me who also have Lyme Disease — perhaps we’re (unfortunately) all part of a local trend together.
Here are a few people living with Lyme Disease in Nashville that I’ve found:
Lisa Bevill from Nashville, Tennessee has Lyme Disease too. She documents all of her symptoms and treatments, and how to get in touch with others who have Lyme Disease in Middle Tennessee. This is her story.
Matthew Goss, also from Nashville, has done a lot of research on Lyme Disease. And he’s also lived with it for 6 years. This is his story.
Tina Jolly is from Michigan, but she found a doctor in Nashville (her 24th doctor!) who helped her get some action toward treating her Lyme Disease. This is her story.
Ann Davis, a Christian musician living in Nashville has Lyme Disease. Fortunately, she discovered a doctor, Jonathan Forester, in nearby Pineville, Louisiana, who, having once contracted Lyme Disease himself, was a specialist in detecting and treating it. He was the first doctor in 8 years of treatment to discover that Davis had Lyme Disease. This is her story.
Marie Turley lives in Nashville and spent 5 years sick with Lyme Disease. This is her contact information.
Daryl Hall (of Hall & Oates) has been living with Lyme Disease after moving to Nashville a few years ago. Before moving here, he performed in Nashville many times and has recorded songs here for years. Thankfully, they caught his Lyme Disease early. This is his story.
TIP: I haven’t done this yet, but here is the form to report your Lyme Disease in Tennessee. (Form PH-1600). Why should you report it? For one, so the Lyme Disease stats by state (like all of those I’ve mentioned in this post) will be more accurate. Lyme Disease is a highly under-reported disease.
Here’s what I’ve learned about how to treat Lyme Disease — based on my own Lyme Disease treatment regime. The truth is… after living with Lyme Disease for so long now, I think I’m getting close to my next phase of treatment.