Lyme Disease Really Sucks!

Okay! Living Free is about . . . well, Living Free, of course. But, I’m going a little off course with this post. I hope you’ll bear with me and take heed from my experience.

This past week I contracted a disease I had seldom given any thought to. Yes, I was aware of it and, certainly, since I’ve lived in rural and wooded areas full of wildlife (including whitetail deer) for the past 37 years, I was aware of the disease and how to contract it. Well, here is the fact – I have it!

Sometime during the past two to three weeks (most likely) a rotten little, bloodsucking, deer tick, about the size of a period on this page, somehow attached its microscopic mandibles into the flesh on the back of my right thigh. It fed off me without me seeing or feeling it. It’s long gone, but it left behind some of its microscopic bacteria that ultimately can become and, in my case, has become a full-blown case of Lyme Disease.

For those of you not fully aware of Lyme Disease, back in the mid-70’s a group of, mainly, small children in Lyme, CT began displaying various symptoms that weren’t easily explained. Some of these symptoms appeared to be arthritic. By the early 80’s researchers had figured it out. It was determined to be transmitted by this nearly microscopic deer tick.

The challenge is that the symptoms may not appear for anywhere from 3 to 30 days of being infected. Additionally, the initial symptoms are flu-like. The rash is usually the give away. However, the classic rash, a bulls-eye, only appears on about 80% of the cases. My rash is on the back of my right leg – quite frankly, this is a location that I seldom spend a lot of time looking, probably because I’m not double jointed. Also, there is no itch or pain commonly experienced with most insect bites.

Once the rash appears, however, it usually is very apparent because, instead of blossoming and then receding and fading away, the Lyme rash continues getting larger and redder. The center is very dark while the outer perimeter is red, but not as dark. Additionally, the rash is very warm to the touch. My rash, when I first noticed it last Monday evening, quite by accident, was somewhat larger then a very large silver dollar size. Today (Sunday, 7 days later) it is about 6” long and about 5” wide, very dark, almost black and blue appearing, in the center and dark red to lighter red closer to the outer perimeter. It’s still very, very warm. And, still no itch or pain.

Okay, so you get the disease, you get a big red rash and then you get over it and it goes away and you have an immunity like with the measles or similar, right? If it were that simple it would be more tolerable. First, there is no acquired immunity. When I shake it this time, I could contract it again next week if another little bloodsucking deer tick targets me.

When did I get bit? I don’t have a clue. Where did I get bit? Again, I don’t have a clue. What were my first symptoms? This past Monday I woke up with a headache. It felt like it might be a typical sinus headache, so I took my normal remedy to get rid of a sinus headache. But, it didn’t help. I also began to feel quite fatigued, a very unusual feeling in the middle of a normal Monday afternoon. I went to meet a lady friend, a psychiatric nurse, for dinner in Martinsburg, WV, about 25 miles from where I was located at that time, in Winchester, VA. It’s a short hop up the interstate and I do it almost every week to meet up with Carolyn. I had very little appetite. That is also unusual. Then Carolyn and I went to sit and chat and enjoy the pleasant weather in her car before she had to go on duty at the local VA Hospital. She said I reclined my seat and fell asleep. That’s also not like me.

Finally, she went to work and I had a challenging 25-mile drive back to Winchester. I arrived at 7 PM. By 9:30 PM I was in bed with my head pounding, aching all over unable to stay awake. I was in bed until 9:40 AM the next day, slightly over 12 hours. I was soaked to the skin as was the bed. My headache was worse. My knees hurt and it was hard to stand on them. My body thermostat was rapidly cycling between sweltering and sweating profusely and chills and shivering uncontrollably. I was putting clothes on and taking them off all day. I also had no appetite and didn’t eat all day.

I needed to drive into the northern Virginia (Washington, DC) area late in the afternoon. It was a very long and challenging one and a half hour drive. I went out to eat with my buddy in Falls Church and was able to eat about half the amount I would normally eat. It was a Chinese buffet and I selected mainly nutritious foods – steamed, low fat and such. I went to my room, attempted to get some work accomplished and ultimately crashed for the night – another 12-hour rest period.

Wednesday morning my hips were in pain then my knees, back to my hips, I was sweating and freezing, the rash I had discovered Monday night before I went to bed, was getting larger. Wednesday afternoon, I began to wonder what I was going through. I’d heard of symptom like  this being attached to Lyme Disease, so I looked it up on the Internet. My gosh, my symptoms were classic. I also checked my blood pressure and it was getting lower and lower while my resting pulse rate was climbing by 10, 15 and more beats per minute. So, I called my doctor’s office in Winchester and the earliest they could see me was Saturday morning.

So, here I am, a normally very healthy, agile 66-year-old guy walking, eating and acting like a very old man. I was never hungry (though I did keep myself hydrated). It hurt going up and down stairs, either my knees or my hips, sometimes both. The sweating seemed to continue but the chills were much less in frequency. My headache was constant, but I think I was getting used to it. I normally suffer from tinnitus from my years in the recording industry, but now the ringing was almost unbearable it was so loud. And, while I might be in bed for 12 hours, I was constantly turning trying to find a comfortable position. Either the knees or the hips would hurt forcing me to move to another position. About the only time I could be comfortable was in a sitting position, but I couldn’t sleep sitting up.

People kept saying why didn’t I go to the Emergency Room or an Urgent Care Center, but there was little more they could do for me then what I already knew from my reading all the information from the CDC, NIH, Mayo Clinic, WebMD, MedicineNet and a few other places. I felt like I wanted to finally be diagnosed and treated by the people who knew me best and had my records. So, I hunkered down and prepared to hang in until I could meet with my own doctors. I left northern Virginia on Friday afternoon, dealt with more traffic then I cared to and eventually made it to Winchester. There my friend, Judy, another nurse, looked at the rash and along with the other symptoms, based on her limited knowledge and exposure to Lyme Disease, said it sure looked like it.

Saturday morning, it was confirmed at my doctors’ office. They said it looked like a duck. It quacked like a duck. It acted like a duck. They sent me to the hospital for an ultrasound look at my leg just to make sure it might not be something that we all missed. But, the ultrasound didn’t find anything out of the ordinary. I went to my local Walmart pharmacy where my prescription had been called in and picked it up. I went back to my room in Winchester and took the first dose of 14 twice a day doses of Doxycycline antibiotics.

So, what is the long-term prognosis? Well, first, the headache seems to have finally gone away. The ringing in my ears is much quieter and manageable. My hips and knees still alternately hurt like arthritic pain (I don’t have nor never have had any arthritic symptoms, so I only know this from what is written about it). I don’t have a fever and I haven’t experienced any chills in a couple days, but I did wake up wet again this morning. The rash appears to continue to expand in size. People who have been bitten on the back have had rashes up to 12” in diameter according to records. My blood pressure and pulse have reversed back to their more normal rates and counts.

I have an order to have blood drawn to check for the Lyme Disease antibodies, which is the final part of the diagnosis. However, this normally will not show up for several weeks. So, I have to wait on that part. As I approach the 14 day point with the Doxycycline, they’ll check my continuing symptoms and determine if I need an additional 7 to 14 days of treatment.

Since I appear to have caught my case very early, the chances are very good that I’ll have a full recovery. However, if I hadn’t, the long-term effects are quite serious, even deadly. Lifetime Lyme Arthritis (similar to Rheumatoid Arthritis), facial palsy, Spinal Meningitis, vascular issues, heart failure, peripheral neuropathy, memory loss and chronic fatigue syndrome are all possibilities. Basically, consider that the brain, nerves, eyes, joints and heart can be long-term targets of the untreated disease. Permanent paraplegia is also a possibility, though only in an extremely limited number of cases. The list goes on, but you should have the picture.

While I should realize no long-term impact, there are no guarantees. My recovery could take a week or two and up to three to four weeks. Some of my symptoms may disappear only to reappear at different times during my recovery. Fatigue may be the most common symptom to remain or recur, but the joint pain may also come and go along with the headache. It’s certainly something I wouldn’t wish anyone to experience. I can’t tell you how to avoid the deer ticks. They’re so small as to be all but invisible. Only a very small percentage of the ticks carry the bacteria, so, even if you’re bitten you’ll never know it. When you’re bitten it’s likely you won’t know if you’re infected until the symptoms appear. But, if you begin experiencing any of the symptoms I’ve described, immediately look for the rash somewhere on your body. It could be in places you’d least expect (call them private, if you will). Have it checked out immediately and don’t take any chances. Left untreated, once the symptoms disappear, and they will after a few weeks, Lyme Disease can really destroy your life years later.

To your health!

Enthusiastically,

Ed