I have Lyme Disease
Tuesday, September 11th, 2007
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.
I 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.
The 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 shots 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
Lots of Links on Lyme Disease
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)
Sorry to hear about your illness Richard. It sounds very serious from the name, i’m glad it can be remedied fairly easily. Heres to hoping you get over the major symptoms soon.
Hi Richard,
Good to hear you are feeling better. You were wearing shorts that day - I have a couple of pictures of you walking along with rucksack and tripod over the shoulder.
Take it steady and speak soon :-)
Jon
So sorry, Richard, to learn about your getting Lyme Disease. Do follow all the doctor’s instructions since this is one of the most dangerous/difficult diseases you can get, and very hard to get over. I’ll be thinking good thoughts about you. ;-)
richard -
sorry to hear this. follow what you’re supposed to do and get better old friend!
will
Thanks Jamie, Jon, Diane.
Update: just stopped by the doctor’s office and my blood test was positive to Lyme. Still waiting on the more definitive western blot test. He also said that after I left two more people came in with similar symptoms and yesterday he had another one. All have lyme in later stages. The fact that they have Lyme is less significant than the fact that adults, who know about Lyme aren’t able to detect it early enough to avoid problems. That’s scary.
Hey Richard,
It’s very good to hear that you found the tick bite before things got too bad. It’s amazing to see how frequent tick bites are becoming, and also that you realized you had lyme! My mother was bitten by a tick about 5 years ago during a family visit, but unfortunately no one could figure out her illness until about 2 years into the illness and it had already reached her nervous system. She continues to take medication to this day and her pains are on and off, but she unfortunately is stuck for life since it was discovered so late. I’m happy to hear that you did in fact figure out that you have lyme before things went downhill quickly. I hope I don’t scare you too much by telling you how serious my mother’s illness has become, but I’m trying to show more of a worse case scenario and give you hope since your illness never reached the late stages. I hope you recover very quickly and it’s good to hear that your medication is sitting well with your stomach. God Bless!
Jeez Richard, That sure is a bite (I couldn’t resist the joke), but I know Lyme’s is no laughting matter. Perhaps you can get the rest you need (”Honey, I can’t do that hard work right now. The doctor says to get more rest.”) and spend more time on the computer, maybe organizing your photos - ha! I hope the anit-bio kills the little varmits the first round. Stay out of the woods for awhile and get well. -Scott
Justin: no problem on your story, thanks for sharing it. What happened to your mother is more common than you’d think which is very sad. Some of it is from misunderstanding and misinformation and some of it is from poor diagnosis by physicians who don’t know enough about it. In my case, I really blew it by waiting so long to get to our doctor who would have diagnosed it weeks ago. That’s the big lesson here for anyone who lives in a place where Lyme is.
Scott, I wish it were that easy but alas, when you feel crappy it’s hard to get work done on the computer because focusing is hard and joint ache makes it hard to type. But, I’m feeling considerably better now and hopefully in a month I’ll be rid of it. I’ve got so much freakin’ work to do outside. Soon…
Wow. Crazy stuff. Glad you’re on the mend now, Richard!
Thanks Newley. One day at a time and today looks like it might be pretty good.
Whenever I have read about your treks into the outback, I always wondered about you and the tick situation, being tick-paranoid myself.
I never go into the woods or fields anymore. I jokingly say that Lyme disease is Nature’s way of keeping people out of the wilderness.
Feel, better, friend.
sheryl k
Thanks Sheryl, I”m slowly getting better and feel a hell of a lot better than I did last week. As far as avoiding the woods and such, it’s a thought but it doesn’t last long as I really love being outside in the very places that are problems. So, I have to learn to dress better and actually check myself out when I get home. The problem is, I can’t see all that well anymore nor can I reach everywhere that needs reaching! Sigh.
a full-length mirror helps because they love the backs of knees… (also, in between toes, groin, armpits, hairline at back of neck) I’ve had them all. It helps to enlist the help of a friend to check. Glasses help too.
to quote Alfred E. Newman, “Yecchh…”
be well.
Sheryl: Alfred e. Newman… you crack me up and I needed that. Thanks.
I’m so sorry to hear this. I hope you are well again soon. If you are going to have some down time you may want to go check out skookumchuck.org I’m hosting it on .mac using iWeb and more or less designing it myself, albeit somewhat amateurishly. (I like the way you render your quotations, how do you put the big quote mark in there?)
I laughed my ass off at the Japanese hurdle race!
Again, sorry to hear you’re down… Hope you’ll be tramping through the woods again soon.
Thanks George, I take it a day at a time.
The big quotes are a CSS style added to the “blockquote” tag. They appear automatically when I use the html blockquote tag.
Yea, that Japanese hurdle TV show is too much. The world sure is a funny place.
I haven’t lurked on your blog for a couple of weeks and imagine my surprise to hear this news. It sounds like you have caught it soon enough. We live with that fear in Kansas now and warn everyone who visits us to check themselves. Double Yecchhh
Pam: I finally passed a point (yesterday) where a lot of the symptoms are just about gone or gone completely. Nice to feel good again, it’s a real drag to have one’s ass dragging for so long. I figure I have plenty of time when I get older to have a draggin’ ass. I posted on this less to get personal attention, more to bring attention to pieces of having Lyme that are problematic: recognizing it and getting it correctly diagnosed.
Thanks for bringing my attention to this post; I’m wondering how I missed it in my feed, but that’s by the bye. What a horrible thing to have crept up on you in this way. If you get the chance, give those deer a stern talking-to about leaving their ticks lying around so carelessly. I’d make sure to wear a bio hazard suit while you talk to them of course, just in case.
I’m glad to hear that the antibiotics are doing good works - and good for you for writing about this. There are many people nowadays who will do a Google search before they think about making a doctor’s appointment.
Sarah: not sure the google search is better than the right doctor but you’re right, maybe reading this will help people make the call. However, as my step daughter has learned, not all doctors know much about Lyme. Sigh.
I hope YOU feel better soon, I was sorry to read about what’s going on with you and maybe, just maybe it’s how you missed my less important Lyme post. Hey, by the way, is there Lyme in UK?
I’d not heard of Lyme disease before, but a quick bit of research reveals that there are 3 species of tick that can cause Lyme disease in the UK. Hmm, I won’t be playing with the deer in Knole Park any time soon, that’s for sure.
Sarah, and don’t hike where deer sleep either.
Dear Richard,
Sorry to hear about your recent diagnosis. Thank you for sharing your story and shining the spotlight on Lyme. I’d love to invite you to share your experiences with Lyme disease on Trusera.com, an online health network where you can find and share real-world experiences with others who’ve been there. Our company was created after our founder’s difficult experience with Lyme disease, which took eleven doctors and finally one email from a friend to diagnose (http://www.trusera.com/users/storyguy/stories/the-bite-that-changed-my-life).
Please let me know if I can send you an invitation to the site – would love to talk to you more about some meaningful programs to help build this resource.
Warm Regards,
Tara.holahan@trusera.com
http://www.trusera.com
Trusera username: teh4
Tara: Thanks for your comment. I emailed you. I’d prefer to simply link to this post from your site. I’m happy to join your site and do it, or you can feel free to do it yourself. Let me know what works best for you.