I live in Tennessee. I was recently diagnosed with Lyme Disease. (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 “weird” symptoms, several trips to the doctor, and several rounds of tests, that they finally realized that Lyme Disease was the reason for all of my recent ailments. Lyme Disease was actually the last thing they tested for.
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 are accurately diagnosed with Lyme Disease.
My symptoms were typical to those experienced by others with Lyme Disease in some ways, but not in others.
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 big sign 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 as 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 the day my symptoms 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 — partly due to the pain. 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 try the 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 now.)
Other symptoms 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 comes and goes. 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. 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 or high-pitched sounds.
The Meds I’ve Tried
Remember, Lyme Disease was the last thing they tested for. At first, we weren’t sure if my symptoms were the result of something viral, bacterial, or what — so the doctor put me on 2-week course of Antibiotics and Prednisone (mostly for the swelling I think). I quickly realized it was the Prednisone that was having the biggest effect because I took it in several doses throughout the day. And I knew when it was getting time for another dose, because my body would start to tighten up and get sore again.
So, after 2 weeks of the Antibiotics and Prednisone, I went off the Antibiotics, without incident. At the same time, I tried to go off of the Prednisone as well, but the symptoms immediately came right back. When I couldn’t walk again the next morning, I went back to the doctor for another series of tests and another round of Prednisone until we could get to the bottom of this. The only thing we knew for sure was that there was clearly something inflammatory going on in my body. And the Prednisone was helping.
Now I find this:
Above all, do not let your doctor treat you with steroids if you believe you may have Lyme. This will suppress your immune system and can cause irreparable damage to your central nervous system. Source
By the time the Lyme Disease diagnosis arrived — a little over a month after the symptoms initially started — I was near the end of my 2nd round of Prednisone. I stopped the Prednisone on that day. The doctor and I decided to see how the symptoms showed themselves with no meds in my system at that point. At first, all went very well. (But I kept a week’s supply of Prednisone on hand just in case — I don’t ever want to go through that painful walking and tightening of the joints and muscles again!)
How I’m Feeling Today
It’s still very early… it’s only been about 2 months since my symptoms first started. But at this point, I’m only dealing with 4 main symptoms and I’ve have no meds in my system at all for the past 2 weeks:
- Neck pain at the base of the scalp… which goes along with the scalp sensitivity all over… which goes along with the swelling in my face, neck, and head (as evidenced by the fact that my glasses & a headband I used to wear a lot now hurt my scalp when I’m wearing them). And the deep inner ear pain is still there.
- A new symptom: my eyesight seems to be getting worse. I normally wear glasses on rare occasion to read or work on the computer. But now I find that I need them all the time. Most things are blurry that weren’t before — not just reading and computer things.
- Another new symptom: headaches! We’re talking round the clock here. I’ve tried Acetaminophen (Tylenol), which had no effect at all. Ibuprofen does help a tiny bit, but not enough.
- And the final set of symptoms I’ve acquired: difficulty concentrating, I’m easily agitated, overly emotional at times yet a strange lack of feelings or emotion most of the time — like I’m in a daze, I’m feeling quite forgetful these days, and I’m doing a lot more typos when I’m at the computer than I used to (I work on the computer fulltime). All of these things just lead to even more fatigue and frustration. The symptoms are never the same from one day to the next.
Unfortunately, these symptoms seem to be getting increasingly worse, so I guess it’s time for another visit to the doctor. This time it will be a specialist, at my doctor’s recommendation. (A rheumatologist.) Plus, I’m thinking I don’t want to go too long without some form of treatment for the Lyme Disease anyway… here’s why.
In addition to whatever the rheumatologist recommends, the doctor said I will most likely be starting a series of different antibiotics that have been used to help treat Lyme Disease.
Several antibiotics are effective in the treatment of Lyme disease. The present drug of choice is doxycycline, a semisynthetic derivative of tetracycline. Even patients who are treated in later stages of the disease respond well to antibiotics. In a few patients who are treated for Lyme disease, symptoms of persisting infection may continue or recur, making additional antibiotic treatment necessary. Varying degrees of permanent damage to joints or the nervous system can develop in patients with late chronic Lyme disease. Typically these are patients in whom Lyme disease was unrecognized in the early stages or for whom the initial treatment was unsuccessful. Source
More About The Onset Of Symptoms
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.
Plus, they say that the earlier you catch it, the “better” your symptoms will be and the shorter they will last.
However, 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. Couple this with the fact that 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.
Lyme Disease is an auto-immune disease. That is, a disease where the immune system attacks the person’s own organs. This happens when something confuses the 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 Lyme Disease is the fact that the symptoms are so unpredictable — and that they seem to come and go, pretty much for the rest of your life. Particularly when you don’t catch it early. In my case, it looks like we’re 2 years out from the bite that gave me the rash, and most likely the Lyme Disease.
Here is a picture of the type of tick that carries Lyme Disease. It’s called the Deer Tick (also known as Ixodes scapularis and Ixodes pacificus) and its most visible characteristic is its long black legs. (Matthew Goss, for one, would argue there are several other ticks that can transmit Lyme Disease.)
Some Of The Doctor’s Early Theories
Despite the fact that my tests kept coming back negative for each of these, some of the things my doctor thought could be going on were:
My first thoughts — based on what little I know about the following illnesses — were:
- Reumatoid Arthritis — It so felt 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 themselves.
- Multiple Sclerosis — I’m telling you, my body had a mind of its own during those first days. 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 though 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… :o)
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 at this point. 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 for the most part, because you can start to ‘feel’ symptoms that you aren’t really having sometimes.
My Previous Tick Bites
I have received a ton of tick bites (more than 30) in each of the states that I have lived in — except for Indiana and Ohio. But I only lived in Ohio and Indiana as a child many many years ago. Every single state that I’ve lived in as an adult I have dealt with lots and lots of tick bites, including Texas, New York, Florida, and Tennessee.
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… lots of camping… and hiking… plus, I’ve always had dogs at the same time. And each dog 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 dogs’ skin. So tweezers were required, and you never really knew if you got the entire head out or not. Plus, the venom or whatever they have is probably already in your system at that point.
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!
But we also have dogs, and they usually come back with a tick or two (or 35!), as well. This, despite the fact that we keep them on both Frontline and Heartguard 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. But it just so happened that I took a picture of one particular rash that appeared a couple days after a tick bite. And my rash looked just like these. (Mine 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. Usually they just itch and turn red. No big deal. The tick bite that led to the rash was 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 is now nearly 2 years after that bite occurred.
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 (.pdf).
Why I’m Really Mad…
Okay, so Lyme Disease had my name written all over it, and now was simply my time to get it. I don’t have a problem with that. (I mean, I’d rather not have it, but hey, it’s in the cards I was dealt.) The reason I’m really mad is because I’ve since learned that, while there is no vaccine to prevent Lyme Disease, there is one particular Antibiotic (Doxycycline), that, if you take it within 72 hours of receiving a tick bite, will almost completely knock out the possibility of you getting Lyme Disease.
Early treatment (within 72 hours of tick bite) with a single dose of 200 mg doxycycline is effective in preventing Lyme disease. Source
Lyme disease is very difficult to catch, even from a deer tick in a Lyme-infested area, and can easily be stopped in its tracks with a single dose of an antibiotic [doxycycline], a new study shows. Source
Okay, so if those of us who spend a lot of time outdoors and tend to get a lot of tick bites knew that… don’t you think we could prevent a lot of Lyme Disease (and these horrendous symptoms that linger for years!) from even occurring in the first place?!?!
Why is no one broadcasting this information to the public… to doctors who can broadcast it to their patients… and to pet owners (who could contract Lyme Disease from removing ticks from their pets)?
I haven’t spoken to my doctor about this yet, but I’m going to ask for a prescription for a couple of those pills (you only need one pill for it to be effective) just in case I get another rash from a tick bite — or Jim does. Am I the only one who thinks this makes sense? [UPDATE: Matthew Goss did this before his hiking trip.]
Like I said, I haven’t spoken to the doctor about this yet, and I dunno… perhaps this particular Antibiotic is a “dangerous” one, or it has bad side effects or something. But can the side effects be worse than the Lyme Disease I’m living with day in and day out?
Okay, I just found this about the antibiotic called amoxicillin… not doxycycline:
It has been estimated that if a 10-day course of amoxicillin were routinely used for antibiotic prophylaxis after tick bites, 8 cases of drug-associated rash, including 1 severe life-threatening reaction, would occur for every 10 cases of early Lyme disease that were prevented. In addition, 3 cases of minor amoxicillin-related adverse effects (e.g., diarrhea) would occur for every case of Lyme disease that was prevented. Source
And here’s some interesting info about the small percentage of people that doxycycline doesn’t work for.
And in a recent report, it appears that they’re downplaying the effectiveness of the single-dose of doxycycline that seemed to work in the past. And they’re now saying this:
A single dose of doxycycline given orally is only 20-30% effective at preventing these diseases in mice. The researchers found that a new formulation of doxycycline hyclate that is programmed to release the drug over a 20 day period is 100% effective. Source
Most patients responded similarly to either the 10-day or 20-day cycle [of doxycycline]. The study suggests that people with early Lyme disease and no heart, joint or neurologic abnormalities, such as meningitis, can usually be treated successfully with 10 days of antibiotic therapy. Source
Fellow Nashvillians Who Have Lyme Disease
Lisa Bevill from Nashville, TN 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 & Oats) is not from Nashville per se, but he’s played here many times and recorded his songs here, as well. He too has Lyme Disease. Thankfully, they caught it early. This is his story.
James Alan Duke, author of The Green Pharmacy Herbal Handbook, has Lyme Disease. He received basic antibiotic treatment for it in Nashville. This is this story (and advice for which herbs might help).
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 stats like all of those I’ve mentioned in this post, will be more accurate. Lyme Disease is a highly under-reported disease.
UPDATE #1: My First Round Of Treatment
Today I started a series of antibiotics for the treatment of Lyme Disease. I’m on Doxycycline 100mg twice a day for 2 weeks. (Most do 4 weeks, I’m not sure why my doc chose a 2-week course.) If that doesn’t help, the doctor said he’d like to try Amoxicillin and Azithromycin (also known as Zithromax or Z-pac).
The doctor also prescribed Butalbital for the massive headaches that I’ve been having round the clock for the past week or so, and a muscle relaxer (Cyclobenzaprine 10mg) to take at night for the horrible head & neck pain that I’ve had for over a month now.
The doctor has also set the wheels in motion for an appointment with a specialist. We actually had an appointment booked with one of the 3 rheumatologists at Vanderbilt Rheumatology of Cool Springs. They’re located right next door to my doctor. And they have their own in-house lab and x-ray facility — I like that. But they don’t seem to have anyone who specializes in Lyme Disease or its effects, per se. So, to avoid being sent through a multitude of tests again to help with the pain in my joints (which at this point is secondary to the head, neck, vision, hearing, and memory issues), the doctor decided to explore a few other options first. Most likely, it will be a visit with someone who specializes in infectious diseases (specifically, Lyme Disease) IF he can’t find a rheumatologist that knows something about Lyme Disease. I realize it could take a little while for him to find the right specialist for me, as I’m pretty sure that I’m one of the first Lyme Disease cases my doctor has had. I’m just happy that he diagnosed it relatively early and that he’s so willing to help me get to the bottom of it.
Oh, and did I mention that we are self-insured? That means, we have a really high deductible ($10,000, our choice), after which the health insurance company (yep, it’s a national one; and a reputable one) kicks in 100% of our health expenses from there. So while money is no issue at a time like this — and we are certainly willing (and able) to do whatever it takes — my doctor recognizes the importance of finding “the right” specialists and trying “the best” medicines rather than going through a lot of trial and error and then relying on a health insurance company to cover it. That’s simply not an option here.
Coincidentally, I found out yesterday that my dog doesn’t have Lyme Disease.
UPDATE #2: What Things Are Like A Year After My Diagnosis
Just over 1 year since I was diagnosed, I’ve only recently begun to experience regular daily symptoms that are attributed to the Lyme Disease. That’s right, 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 recently, the doctor told me that I have reactive arthritis now. At first it 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.
My mornings are greeted 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 achey 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.
Update #3: Lyme Disease Doctors
The 2 questions I get asked the most are:
- “Have you found anyone is knowledgeable about Lyme Disease in Nashville?”
- “Can you recommend any Lyme Disease doctors in the area?”
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 doctor, I will post another update right here.)
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 off 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 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.
It 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’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.)