Lyme Disease

Swamp

Swamp

Mattatuck Trail, Warren, Connecticut.

I took a hike along this new section of the Mattatuck trail that’s right in our little town. It crosses this swamp and I had to bushwhack in deep snow closer to this viewpoint through what looked to be a tick-infested jungle of branches to get this shot.

Around here Lyme disease is a real worry so going off trail in a place like this is a risk. I thought this shot might be worth the risk but having had Lyme disease I can tell you, it wasn’t. I like the shot but Lyme disease is no fun at all and if I had it to do over again, I’d have skipped this off-trail bushwhack.

I have Lyme Disease

For the last month I’ve been feeling various odd symptoms on and off: joint ache, stiffness, occasional headaches and I had a groin injury from yoga a month ago that would not heal and seemed to be getting worse. I wrote it off to summer-fall transition, allergies, getting old, and being out of shape.

Early last week I started feeling feverish in the evenings although the next morning the fever was gone and I felt better. Each time I thought I might go to the doctor the night before I decided to not go the next day when I woke up as I was better. However, the “better” was getting progressively worse and on Thursday I went to our family doctor.

I told him my symptoms and that my hunch was Lyme disease but I had never had it before, knew little about it and never saw the classic bulls-eye rash around the tick bite. He asked me a few questions then had me strip and in one minute he said he was pretty sure I had Lyme disease; he’d found a secondary rash on my chest which, amazingly Anne and I had never noticed even though it should have been right in front of my eyes every day in the bathroom mirror. The nurse (who is his wife) took blood but he was quite sure I had lyme and given the lack of accuracy on blood tests he prescribed a month of the antibiotic Doxycycline.

It was both a relief and a bit frightening to have an explanation for what was going on: I now had a label for what was happening to me yet I didn’t know much about Lyme disease except that the antibiotic typically taken is rough on the stomach and that some people have a hard time getting this infection out of their systems.

Given my symptoms, our doctor (who we like and trust) theorized that I’d had the tick bite about six weeks earlier, had missed the initial rash and never saw the tiny tick on me. He thought there might have been more than one bite. This meant that my case of lyme is considered just past “early stage” and might be a bit tougher to get rid of quickly. He warned me that I’d have good and bad days for the next month, even while on the antibiotic.

I picked up the antibiotic and took one that evening. The next morning I felt considerably better, better enough so that it struck me odd that I had had no idea of how bad I was feeling all the time. From what I’m reading now, this is a big problem with self-diagnosis of Lyme and related infections: the symptoms come on so slowly and are so mild initially and ramp up so gradually that we run the risk of writing them off to a bad day, getting old, whatever.

I’ve now been on the antibiotic (twice a day) for four days and I’m feeling much better. I still have a bit of joint ache, still get a bit feverish in the evening but life is going on and I hope/pray that a month of drugs gets the infection out of my system. And, lucky me, the antibiotic isn’t bothering my stomach.

What is amazing to me is that I’ve never had Lyme disease before. I spend a considerable amount of time outside, either tramping through tall grass on hikes to take pictures or working on our place. I typically wear shorts and even though I shower at the end of days where I’m out, I don’t really do much of an inspection for ticks. And these ticks are so small that my middle-age eyes will probably continue to miss them if they’re on me.

I do know that Lyme disease is transmitted by deer ticks so know to avoid places that deer hang out. But, maybe I didn’t take this knowledge quite seriously enough as I’ve never had Lyme disease before.

Gary makes a friendI have a theory on where I got the tick bite: it was in this spot at Macricostas preserve. This image of my friend Gary who was visiting was taken July 8th which might be a bit early but it’s possible it was this very day in this very spot. The grass is trampled in this area because deer sleep here. Perfect spot for deer: visual protection deep in the tall grass and a stream for drinking and the ticks hop off into the grass. Had the bite happened this day it would mean that I’ve been carrying Lyme for two months. I’m not sure I was wearing shorts here but it’s still possible that a tick got me through a sock.

Jon at Macricostas PreserveThe other possibility is this visit to the same spot with Jon on August 4th. The grass was still deep and there were plenty of deer beds in it. I’m pretty sure I was wearing shorts here. This would mean I’ve been carrying Lyme for about a month.

Hard to know for sure but that’s my theory. You can bet I’m not going back to that spot without full body armor on. But, kidding aside, now that I know what Lyme disease is about I’m going to be quite paranoid about tick bites for at least a little while. Good thing it’s the end of the season but alas, fall is coming and ticks just love leaves. Ugh.

Note: scrubbing with a course washcloth or Luffa will not remove these ticks; once they attach one has to use classic tick removal technique.

Issues
Because we live in rural Connecticut our doctor has seen a lot of Lyme and he says that it “presents” in so many different ways that unless a physician has a lot of experience with it or has done extensive research it’s easy to misdiagnosis non-classic later stage presentations of Lyme.

Because the symptoms of Lyme disease can be confused with symptoms caused by other things, self-diagnosis is tough if one misses the visual cues and many people, like me, progress into later stage infections.

Because of these and other issues, there is both under and over diagnosis of Lyme and because of this, to some in the medical community it’s a controversial disease.

Had my infection continued to get worse unchecked I’m pretty sure I was on my way to something close to Meningitis which would have put me in the hospital.

Bottom line: if you think you have it, do something about it immediately.

Resources
Lyme disease at Wikipedia
Lyme Disease Association, Inc.
Lyme disease at Medline
Lyme disease at Family Doctor.org
Lyme Disease FAQ
Lyme Disease Resources
IGeneX, Inc., Reference Laboratory
International Lyme and Associated Disease Society
Diagnostic Hints and Treatment Guidelines for Lyme and other Tick Borne Illnesses
Nancy’s Plea (on doctors with reservations about diagnosing Lyme)