How Late Stage Lyme Disease Caught Me Off Guard

Health, wealth, and time are our most valuable resources, and I like being in control of them. But sometimes circumstances arise that we don’t foresee. Over the past few months my health went out of my control as I developed late stage Lyme disease. It left me mentally and physically incapacitated for some time, and I’m still recovering from it.

Anyone who is active outdoors can come in contact with ticks carrying Lyme disease. If diagnosed early enough, a short regimen of antibiotics can cure it. The big problems occur when it’s left untreated for a long time.

I thought I knew how to diagnose Lyme disease. I even took my mother to the hospital for it last summer when she developed a high fever and and the well-known bull’s eye red spot. After some antibiotics, she recovered quickly with no ill effects.

My early stage Lyme disease didn’t show obvious symptoms

I’ve since learned that many people don’t get these initial symptoms, or they can be hidden. I didn’t know much about late stage Lyme disease, and the symptoms crept up on me slowly over a few months.

I did a lot of mountain biking last summer and pulled off some ticks, but didn’t see any attached for more than 24 hours. One day I was riding alone, and took a jump that I shouldn’t have. I landed on my head and broke my helmet in six places. My recovery was slow. After x-rays came back clear, we blamed being tired, sore, and weak on the bike accident. In retrospect, the accident may have covered up early symptoms of Lyme.

I probably picked it up in the woods

One month later I was feeling better, and even went on a great trip to Belize. I was still mountain biking, hiking, and growing food in my greenhouse. I did however start feeling lethargic and started writing less often. At one point I jokingly told my wife that I might be having retirement induced cognitive decline…

Late stage Lyme disease symptoms started showing

About 4-5 months in, I woke up to a particularly stiff knee. I figured I just needed to work it out, so I did some squats and went for a bike ride – it didn’t help. The swelling and pain progressed until I was barely able to clear the snow in our driveway or walk up steps. With a surfing trip coming up, I went to the doctor to sort it out.

My doctor told me I should have been taking more ibuprofen to bring the inflammation down, and sent me to an orthopedist who took x-rays. Nothing showed up, and the orthopedist gave me the same directions as the doctor – take ibuprofen. So I spent the next few weeks on the couch popping ibuprofen like candy.

The swelling went down, and over the next couple of months I made two trips to surf in Costa Rica. At this point I was having headaches, and my eye was twitching under strong sunlight. I thought it was weird, but was having too much fun surfing. My knee even started to feel better being in the water.

Time out of the water was spent icing my knee

In between the trips I had another issue with a lot of rib pain (turned out to be a fractured rib from surfing,) and my doctor put me on a steroid which also helped with my knee. I surfed the whole second trip (my doctor failed to inform me on the x-ray results about the fractured rib,) but my knee was getting stiffer.

Finally getting a diagnosis for Lyme disease

When I got back from Costa Rica, I was about seven months into the ordeal. My knee was swollen like a cantaloupe. I was also getting very tired and lethargic, and spent most days in bed surfing Reddit and YouTube. I couldn’t focus enough to do anything else like writing.

Depression hits me hard when I’m not productive, and this was the first time that I thought I’d rather be at work. Anytime I tried to exercise, my symptoms would get even worse, and my brain was mush.

I saw my doctor again, and asked to see a better orthopedist who drew fluid from my knee. From the color of the fluid he immediately suspected Lyme disease. My knee fluid and blood were sent out for testing.

I started googling and found that I matched all the symptoms for late stage Lyme – knee swelling, lack of energy, depression, headaches, light sensitivity. All of the sudden everything clicked, and I was filled with a combination or remorse (for not catching it sooner) and relief.

My treatment for late stage Lyme disease

Before even getting the test results I went back to my doctor to get on antibiotics ASAP. We decided I should start a round of Doxycycline immediately, and I was given a one month prescription.

I was so happy when I got my giant blue pills. Within a few days the mental fog started to lift. It was incredible being able to just focus on a project for more than a few hours.

I found ways to do some things

Then, I started having what felt like muscle spasms. There was intense burning pain in the back of my leg, but no actual spasms. It kept me in bed most days, and awake at night. This lasted for a couple of weeks as the bacteria was killed off. The pain subsided just enough to go on our trip to Grenada nearly a month later.

Is there such a thing as chronic Lyme disease?

My doctor was all over the place with how long I should be taking antibiotics, and didn’t have a clear prognosis. In doing my own research, I saw that the CDC doesn’t recommend taking antibiotics for more than a month. They also do not recognize chronic Lyme disease. This was the opposite of what I’d read on many blogs and heard from friends who had Lyme disease.

On advice from the orthopedist who did correctly diagnose me, I saw an infectious disease specialist. After a quick exam I was definitively diagnosed with Lyme arthritis.

I asked him what he thought about chronic Lyme, and the fact that people have issues long after being cured with antibiotics. He confirmed what I read on the CDC website. They believe the Lyme bacteria are killed off after one month of antibiotics. Some doctors have done more harm than good by prescribing high doses of antibiotics for as long as the symptoms are recurring.

Why I have chronic symptoms from Lyme arthritis

While bacteria are killed off, they can leave lasting damage behind. In the case of Lyme arthritis, it’s believed to be an autoimmune issue. The Lyme bacteria have an antigen that closely resembles the antigens in our tendons. The infectious disease specialist said that our body’s immune system can’t differentiate these antigens and keeps on attacking.

In addition to continuing complications, I will always test positive for Lyme disease. The blood test only looks for Lyme antibodies which never go away. This is another reason people are misled into thinking there is a chronic Lyme infection. I can however still get Lyme disease again, and drawing fluids from swollen joints to test for Lyme DNA is the only way I’d be able to tell if there was a recurrence.

Recovering from Lyme arthritis

It’s been about 10 months since I contracted Lyme, and over 2 months since I completed taking antibiotics. Recovery has been painfully slow.

I’ve been doing physical therapy which has helped. I still can’t squat all the way down, or go for a run, but yesterday I went on a short hike for the first time in months. It’s been awesome finally being able to get outside to catch up on work around my garden.

Since I can get Lyme again, I plan to be more careful going forward. I used to avoid chemical sprays, but this summer I’ll be spraying down religiously with DEET. The infections disease specialist also recommended treating our hiking and biking clothes with Permethrin (affiliate link.) This stuff is supposed to last through several washes and be a constant tick shield.

I’ll be a lot more careful in the woods

Moving on from Lyme

Sometimes I blame retirement and being caught up with travel for missing the disease myself. Other times I’m pissed that the medical professionals didn’t catch it. But at the end of the day, life is unpredictable and shit happens. I’m realizing how spoiled I’ve been with my health, and how lucky I am to have a prognosis for a full recovery.

This experience has left me with a new appreciation for how physically involved my lifestyle is, and how one day I won’t be able to keep up. That leaves me even more grateful for the opportunities that I’ve had, and eager to keep enjoying life and early retirement freedom for as long as I can.