I was bitten by a tick in May of 2009. It was a very small tick, no more than a couple of millimeters big. When I found it embedded onto my thigh, it must have been there for at least 24 hours. Being so small, it could have been there longer. After pulling out the tick and making sure every part of him was removed, I put some Neosporin on the bite area and went about my business.
Being an outdoorsy person, ticks weren't something to worry about. Usually, they would telegraph their presence with their slow, ponderous walk up your arm or leg. If you were outdoors, you'd simply flick them off. If you were indoors, you'd find a creative way to dispose of them. In the outdoors, you are much more concerned with keeping mosquitos and black flies at bay.
After about 3-4 weeks of my tick bite, I noticed some redness around the old bite mark area. A few days after that, I got the familiar "bullseye" rash known as EM (Erythema Migrans). Some people report no pain with this rash, but that was not the case with mine. The ring areas of the rash were very painful and walking was a little delicate. Our neighbor, an RN at an area hospital, suggested I make an appointment with my primary care physician.
With my story of a previous tick bite and the resulting EM rash, my doctor made a quick diagnosis of possible Lyme disease. A victim of Lyme himself, he prescribed a 2 week long regimen of 200mg Doxycycline 2x/day. Additionally, he ordered some standard blood tests, including the Western blot test for Lyme Disease antibodies. He noted that if the Lyme Disease test came back positive, I would likely be getting a call from the CDC (Centers for Disease Control), as they would be collecting data for Lyme infections in our area.
After the 2 week antibiotic treatment period, the EM rash was gone and I was feeling well. I had not received a call about test results, so I placed a call to my doctor who told me that my Lyme test had come back "equivocal". He said that was not unusual, since the treatment could have started before Lyme had become fully engaged in the body.
"Oh well", I thought. At least I was feeling good again. And, I had taken on the dreaded Lyme Disease and could cross that one off my life list!
In late October of 2009, I started a remodel project on our upstairs bath. It was a total renovation down to the studs and joists. It required a lot of physical effort- hauling out the demo'd flooring and wall materials, as well as bringing the new building materials upstairs. I noticed that my knees were starting to hurt at the end of the day, so I started wearing knee pads when working on the subfloor and plumbing. It helped mask the pain, but at night, the pain was steadily increasing.
In early November, the knee pain had moved to the backs of both knees. There was also a shooting pain up the tendons on the side of my knees when I knelt down. I was thinking that maybe I was twisting my legs somehow as I slept. One night, when I woke up in the middle of the night for a bathroom break, I started shivering. By the time I made it back to the bed, even my teeth were chattering! These chills would come every couple of weeks or so, but I kept explaining it all away in my head.
By end of December, I've resigned that something is going on. It's harder to walk, I've lost interest in any more home improvement projects, feel very tired and wake up in cold sweats at night.
In early January, I'm now running a low fever during the day. My knee joints have completely swollen up. There are "hotspots" of red swelling that seem to move around my knee joints. These spots have moved onto the top of my feet, so now my feet have limited motion. My legs don't fit into my skinny jeans and I struggle putting on my socks and shoes. I can't walk. My wife moves our bedroom to the downstairs bedroom so that I can avoid steps.
A warm, red spot about the size of a golf ball appears on the top of my right hand by my ring finger. Within 2 hours, that spot feels as though it has been hit by a hammer! I spend my time researching my symptoms on the internet to find what it could be. My wife says, "I think it's your Lyme disease- it's back!" The next day, that spot moves over to the top of my right wrist and my right hand swells up like a club! That's it! I make an appointment with my primary care doctor for that same day.
Knowing my previous history with Lyme and the asynchronous joint swelling symptoms I am experiencing, my doctor says I'm exhibiting the symptoms of late stage Lyme Disease. The doctor says it could also be my body staging a delayed autoimmune response to some antibodies related to the treated Lyme. He prescribes 2 months of Doxycycline 2x/day. He also orders another round of blood tests including a standard Lyme test. He recommends OTC NSAID's for swelling and fever relief. I start taking 800mg of Ibuprofen 3x/day. The doctor says, "If you feel any worse, go ahead and go to the emergency room- I'll catch up with you there." As I'm going to the pharmacy to pick up my "Doxy", I'm thinking that I haven't looked so forward to filling a prescription in a long time!
In the days after starting my antibiotics, I see my temperature soar to 102.4 degrees at times during the day. Nighttime is a horror of sweats and chills- I sleep on top of beach towels so that I can change them out during the night. I dread having to go to bed.
3 days after the blood tests, we find out the Lyme test has returned negative. My doctor calls and says, "I diagnosed based on your symptoms, but now I don't have a basis for the treatment that I prescribed. I'm referring you to a colleague of mine who is an infectious disease specialist."
The specialist orders a full range of blood work. I've never had so many viles taken at once- 7! One of the tests ordered...can you believe it...is another Lyme test. She says that Lyme disease is seen in our geographic area year 'round now. Ticks can be active during an early thaw or milder winter. You can also encounter them in the firewood that you split, stack and haul into your warm home. I saw where this was going. "Do you think I was bitten a second time by a tick?" She said it was possible, the bullseye rash that is such a dead giveaway only shows itself in some cases. She said it could also be secondary or advanced stages of the prior Lyme infection. There is not yet a lot of empirical data on this disease- even the CDC says the standard blot test for Lyme disease is not effective. Better to wait on the results from the tests and proceed from there.
One week later- blood tests are back. Lyme disease test ....is....negative. Inflammatory markers including CRP are flagged as high. My infectious disease doctor says, "It's obvious that your body is fighting something. Continue with your antibiotics, and we'll do another round of blood work in 2 weeks."
February starts to show improvement. The roving hotspots are starting to diminish. My right hand has now gone back to normal and there is no pain in my wrist. Body temperature during the day hits a high of 100.4. Toward the end of February, I can walk unassisted for short distances and can tackle steps one riser at a time.
To build me up a little bit, my wife plans for us to go to Philadelphia for a getaway weekend on March 5. I'm steadily, but slowly, getting better each day. The last of my Doxycycline will run out the Monday we get back from Philly, and I'm a little worried about that. As it turned out, the weekend went very well. I could walk around for about 4 hours or so, then return to the hotel to elevate my legs for an hour or so and then go back out again. Nighttime chills and daytime fever seem to be gone and walking is much easier.
On March 18 I had a follow up appointment with my specialist. My inflammatory markers, while still above the normal ranges, showed a large improvement since the previous testing. Swelling in the knee joints in much reduced, so that I can walk up to 2 miles. She would like me to start reducing my Ibuprofen and Naproxen doses to wean myself off of them in 2 weeks. It's recommended that I just take Ibuprofen, 800mg, 2x/day to start.
I'm steadily returning to health, but it is a slow process. I think back and recall how slowly all of my symptoms came on. It's amazing that they are fading as slowly as they came. Not much of an ending to a long story is it? Oh, I forgot to tell you- that last Lyme test from March 18? Negative!
As much as I would like to be labeled or stamped, "Lyme Disease Sufferer"- it's just not that easy. I may never know what this ailment was, and conversely, I may see it again. Thanks for listening!
John
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