Lyme Disease Stories

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One Man's Experience with Lyme Disease

John got Lyme disease on a camping trip with his son. This video describes how the early symptoms felt and how he was treated by his physician, Dr. Heaton. Dr. Heaton talks about some common concerns that patients have with Lyme disease and where it occurs. John follows up with some tips for avoiding tick bites and Lyme disease.

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Announcer: The Centers for Disease Control and Prevention presents Lyme Disease, One Man's Experience
John:My name is John. I got Lyme disease last July of 2011. I was out in the woods camping with my son, with the boy scouts, and we’d been out there for a week and that’s when I got it. You know being in scouting and being an outdoors type of person I knew quite a bit about it. I knew what the symptoms were like and I knew it was a tickborne disease. And that it was something that you definitely want to get checked out if you see any symptoms. In the evenings when we’d come in from the activities that we were doing in the field, I felt an itch on my right hip and didn't think anything of it because it just seemed like a mosquito bite, or some other kind of a bite that would normally itch. And that was about Wednesday or Thursday that I noticed that. Later on I checked you know for tick and didn’t see anything there, but later on it presented itself a bit differently.
Announcer: Early symptoms of Lyme disease can include a red expanding bullseye-like rash, fevers, chills, fatigue, headaches, muscle and joint aches, swollen lymph nodes and facial paralysis on one or both sides known as Bell’s palsy.
John:Well I started to feel ill probably, you know if I'd noticed the itch on Wednesday, probably by Friday, I started to feel just a little not quite myself. Still didn't really connect the two. By Saturday morning by the time I had gotten home I was just feeling lethargic, tired, a little achy. I’d gone to take a shower after being out in the woods and, got out of the shower and looked down at that same area and noticed there was a bright red bullseye rash, and so I knew there was something wrong at that point. Well, I went and visited Dr. Heaton and Dr. Heaton took a look at the rash and we talked about treatment possibilities. You know he calmed me down a little bit, I was a little nervous about the whole thing, given that I'd been bitten by ticks before but had never seen a rash, and this was the first time I did and so I was concerned about some of the long-term effects.
Dr. Heaton: Every one of us seems to know somebody that has dealt with Lyme disease and some of those people have developed complications that last longer than others. Some people are worried about the long term side effects. Other people feel like, man, I feel so awful, I have headaches, I have a rash, I have body aches and I can't think at work, how am I going to get back to work in the next two or three days because I have an important thing to doing two days from now and they want to be fixed right away.
John:He told me that it’s better to go ahead and treat it, that there wasn’t a need at that moment to do a test given how it was presenting and how it was feeling. He said a round of doxycycline might be the best method to help me out. The first couple of days afterwards I was still kind of feeling achy. I missed one day of work on Monday feeling kind of feverish and achy. But I was back at work by Tuesday. By the next Saturday felt fantastic. I was back to my old self again.
Dr. Heaton: The good news is the vast majority of people treated for Lyme Disease do very, very well, and I would say that most people see resolution of some of their symptoms within the first two or three days, at least starting to. But it takes up to a few weeks to see complete resolution of their symptoms that they came into the office with. There is a lot out there thanks to the internet in regards to Lyme disease which is good and bad for doctors and for patients I think. It's so common that people have had friends who have experiences with it, so often by the time that they come into the office, even if we haven't made the diagnosis yet, they're already convinced they have it, they are already concerned about certain things. In the area of the Northeast especially and then also Wisconsin and Minnesota area, highly endemic areas for Lyme. Then you really ought to be doing nightly checks especially during summer months for ticks and sore moving the ticks before you go to bed that night.
John:I think that you know more and more, you hear about more and more cases it's just very important you educate yourself about Lyme disease. Understand what the symptoms are like and get yourself to a doctor just as soon as you see or feel any of those symptoms so they can check you out professionally. A couple of things you can do to prevent Lyme disease is wear insect repellant that's got DEET in it and spray around the entrances to your clothing. Check for ticks daily after you've been out in the woods or near deer. You can also shower right after and when you take a shower you can check, check yourself over for ticks and call your doctor if you have a fever or see a rash anywhere on your body.
Announcer: Learn more at www.cdc.gov/lyme or www.cdc.gov/ticks

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Ticks Strike Twice

Linda got Lyme disease once but was later bitten by another tick. Read her story to find out how she felt and why it's important to remain vigilant against ticks.

Linda's Story

“I’ve had Lyme disease two times. The first time was in 2001. I likely got the tick playing in the yard with my daughter. We live in Maryland and we back up to park land. Deer are plentiful.
I developed a bull’s eye rash, first on the back of my knee, followed by one on my lower back a few days later. I had heard that a rash could be associated with Lyme disease so I looked up Lyme disease on the internet. I also read about the symptoms and testing. The information on the CDC website advised me to go to the doctor and share my symptoms and ask about testing. After reading the information, I went to the doctor and they took a blood sample. I never found a tick.
About 5 days later, before the test results even came back, I began to develop flu-like symptoms. I remember the symptoms coming on quite rapidly one morning. By early afternoon, I was quite sick with a high fever. It was a Saturday, so I drove myself to the afterhours care at our HMO. I remember having a horrible headache; the worst one I have ever had and all my muscles hurting. Because I was so ill and all my symptoms were consistent with Lyme infection, the doctor put me on antibiotics right away--even though the test results were not yet back. The test did eventually come back positive. My symptoms cleared up very quickly, within a couple of days. I have no lingering symptoms at all.
I got Lyme disease a second time about 3 or 4 years ago. I had what appeared to be a scab on my hip that wouldn’t go away. I finally picked the scab off; later I realized that the scab was probably a tick. I had a small rash that developed around where the scab had been and showed it to my friend who is a physician’s assistant. She suspected that it could be Lyme. I made an appointment with my doctor who ordered a test. He prescribed antibiotics even before the test results came back positive. Because I took the antibiotics right away, I never got sick like I did the first time and never had any other symptoms.
I am always very wary of going outside in the spring, summer and fall without repellant. So many people in our neighborhood have had Lyme disease and the deer population has grown in the last 10 years, so I always feel a bit concerned; more so for my children than for me. I insist they have on bug spray when playing in the yard and always check them for ticks every night when they have played outside.
It’s so important to get accurate information about the signs of Lyme disease. If someone suspects they have been bitten by a tick or have a suspicious rash, the best advice I can give is to not wait to see your doctor. If it is Lyme disease, the sooner you can be diagnosed and treated, the less likely you are to develop more serious symptoms.”