I live in Nashville Tennessee. I was recently diagnosed with Lyme Disease. (By the way, in some parts of the country, they call it Lymes Disease — but technically, it’s Lyme Disease.)
With approximately 20,000 new cases reported each year, Lyme Disease is the most common vector-borne disease in the United States … Lyme Disease became nationally notifiable in 1991. Source
It was after a month of having “weird” symptoms, several trips to the doctor, and several rounds of tests, that they finally realized Lyme Disease was the reason for all of my recent ailments.
Despite having many different symptoms and signs of Lyme Disease, that was actually the last thing they tested for.
My official Lyme Disease diagnosis came on Tuesday, April 8, 2008.
But… I’m one of the lucky ones. Typically, people go through upwards of 20 doctors and years of wrong diagnoses and treatments before they’re accurately diagnosed with Lyme Disease.
Here’s how I found out I had Lyme Disease, and what I’m doing about it now…
My Lyme Disease Symptoms
My first signs of Lyme Disease were typical to those experienced by others with Lyme Disease in some ways — but not in other ways.
Here’s what I started experiencing (out of the blue) one morning:
- Massive aches and pains in all joints — mostly feet and neck, and to a lesser degree my hands (fingers). It was so bad in my feet that it was very hard to walk. And so bad at my neck that I couldn’t turn my head to the right or left, up or down — the muscles were so tight leading to a stiff neck like I’ve never experienced before.
- Fever. Normally, I barely register 98 on a thermometer on a good day. So this was a sure sign that something was up.
- Swelling in my ankles, hands, wrists, and feet.
- Every single lymph node in my body was sensitive to touch, and those areas just ached all the time — without being touched. I learned that I had lymph nodes in places I never knew I had lymph nodes. I guess this is the same as swollen glands.
- Every single muscle in my body ached for no reason. I had not done anything strenuous in the days leading up to this. But even my ribs hurt to touch, and my hips. I just felt like I’d been beat up.
- A weird sensitivity on various places of my scalp — NOT a headache though. Not a migraine either. It’s as if the pain was from the inside out, but you didn’t notice it until you touched it on the outside. Mostly at the very top center of my scalp, and at the base of my neck — right where the head and neck meet. This is the one and only symptom that has never gone away from that very first day my physical signs of Lyme Disease began.
- Inner ear pain, but no sore throat. It was as if I had water in my ears. Plus, there was a minor ache way inside all the time. (This symptom has also remained, but it’s less noticeable unless I think about it.)
- My throat was very red, but it wasn’t sore. With the fever, inner ear pain, and swollen glands behind my ears at my throat… it appeared there could be something with the throat going on.
- Numbness that came & went on my last 3 fingers on each hand (fingertips only), as well as the last 3 toes on each foot (tips only). Plus, the tips of my ears felt tingly and numb most of the time.
- Complete lack of energy. This was partly due to the pain, and partly due to just feeling fatigued and frustrated that no one could find a reason for all of my aches and pains. It’s as if they weren’t really there — no test could validate them. UNTIL that day that my doctor thought to do a Lyme Disease test! (In fairness, he had no way of knowing how much time I spend in the company of ticks. We had never discussed that before — so what we now know were signs of Lyme Disease could have meant practically anything to him.)
Other signs of Lyme Disease that began to appear a week or so later:
- Weight loss for no reason. This continued even while I was on Prednisone for nearly a month, and Prednisone is supposed to make you gain weight. As soon as I went off the Prednisone, my face, neck, and scalp swelled up enough to be barely noticeable.
- A crazy fast heartbeat that came and went. It would typically start racing right after I ate my first meal. And it would sometimes start back up at night — which made sleeping very difficult. Sometimes it would just start racing for no reason. It was very scary. I tried anything I could to slow it down — to no avail. Once I went off the Prednisone, this symptom pretty much went away.
- Constant ringing in the ears. This one continues to this day. It starts the moment I wake up — even with no TV on, no radio, no nothing. However, because I’m busy throughout the day and there is a lot of noise, I don’t seem to notice it as much. But in the evening, it gets worse again — as things quiet down and I try to get to sleep. I was also noticing a greater sensitivity to loud noises and high-pitched sounds.
More About The Onset Of Lyme Symptoms
These are just a few of the interesting things I’ve learned about the signs of Lyme Disease after receiving my diagnosis:
- One of the strangest things about Lyme Disease is the fact that the symptoms are rarely the same for any 2 people diagnosed with the disease.
- In terms of getting an official Lyme Disease diagnosis from the doctor… they say that the earlier you catch it, the “better” your symptoms will be and the shorter they will last.
- One sad fact about Lyme Disease is that it usually doesn’t present itself in the form of visible symptoms until many months (if not years) after you get the tick bite that infects you.
- And you can actually test “negative” for Lyme Disease for months or years — despite the fact that you have Lyme Disease in your body just waiting to make its grand appearance in your life!
I’ve always wondered if you already have Lyme Disease and you get bitten by another Lyme-infected tick later, do your Lyme Disease symptoms get worse? In other words, can you get Lyme Disease more than once?
Then I found this:
Bad news: if gone untreated, Lyme disease can cause arthritis, cardiac disease and neurologic disorder. More bad news: Lyme disease isn’t like the Chicken pox. There is no immunity. Once you have Lyme disease, you can get it again. Your pets can also get it, too. So, do your best to avoid any possible tick bites! Source
What Exactly Is Lyme Disease Anyway?
Lyme Disease is an auto-immune disease — a disease where the immune system attacks your own organs. This happens when something confuses your immune system.
The finding has bolstered the view that the symptoms are caused not by bacteria, but rather by the body’s own autoimmune response. Researchers theorize that the body may attack its own healthy cells, mistaking them for harmful bacteria. If such is the case, and there are no bacteria to destroy, antibiotic therapy in these patients may be unproductive. Source
From what I can tell, the worst part about having Lyme Disease is the fact that the symptoms are so unpredictable.
That, and the fact that the signs of Lyme Disease come and go — pretty much for the rest of your life (particularly when you don’t catch it early).
Once you have Lyme Disease, you always have it. It goes into remission and then flares when your body is weak. It attacks different parts of your body … It is not curable, but treatable. Source
In my case, it looks like my Lyme Disease diagnosis came 2 years after the tick bite that gave me the rash — which is most likely the tick that transmitted Lyme Disease to me.
These are photos of the type of tick that carries Lyme Disease. It’s called the Deer Tick (also known as Ixodes scapularis and Ixodes pacificus). The most visible characteristic on a Deer Tick is its long, black legs.
Matthew Goss, for one, would argue that there are several other ticks that can transmit Lyme Disease, as well.
Some Of My Doctor’s Early Theories Before My Official Diagnosis
Despite the fact that my tests kept coming back negative for each of these, some of the health issues my doctor thought could be going on were:
My Own Early Theories Before The Lyme Disease Diagnosis
My first thoughts (based on what little I know about the following illnesses) were that I might possibly have:
- Rheumatoid Arthritis — It felt exactly like what I imagine arthritis to be like. My fingers and toes were massively painful. I couldn’t bend them — yet they were slightly bent by themselves.
- Multiple Sclerosis — I’m telling you, my body had a mind of its own during those first days that I experienced early signs of Lyme Disease. I couldn’t walk properly. My reflexes and reaction times felt slower — so much so that I thought maybe I shouldn’t be driving at times. And my mind seemed like it was in a haze most of the time. Plus, I used to do bike rides for the Multiple Sclerosis Society — I probably did a dozen or more of their rides through the years. And 2 of those times, I didn’t raise the minimum donations that they asked you to raise. (I was selfish and I just wanted to do the ride.) Truth is: I’ve always feared that Karma would get the best of me someday for that.
I will say this… I didn’t tell anyone about my symptoms until after I got the diagnosis, because I didn’t want others to (unintentionally) scare me with symptoms and diagnoses that they were familiar with… or that they’ve heard others have experienced… or maybe something they’ve read about this or that.
Instead, I wanted to rely 100% on the doctor.
I’m not one for hypothesizing. I prefer to have things in black & white. And I didn’t even go onto the Internet to research different symptoms and illnesses and diseases. I think that does more harm than good sometimes — because you can start to “feel” symptoms that you aren’t really having.
My Personal Updates
Here’s the next phase of my Lyme Disease journey: My Lyme Disease Treatment Regime
And here’s my recovery update: What It’s Like Living With Lyme Disease In Tennessee