My Battle with Lyme Disease

Many of you know that I have had several struggles with my health in recent years, including battling Chronic Lyme Disease. For those that don't know I was bit in December 2003 (9 months into a 2 year planned stay in Indonesia) and became sick in January of 2004.

Initially we didn't know what was causing me to become sick as the symptoms were vague including headache, fever, swollen lymph nodes, sore and achy muscles/joints. We checked for all the common tropical bugs including malaria and they were negative. Because one of my symptoms was a bad sinus-like headache and we hadn't figured out it was all related to the bite from several weeks ago I was treated with antibiotics for a sinus infection. This caused what was most likely Jarisch-Herxheimer reaction, which is when the antibiotics kill off so much bacteria quickly, your body is overwhelmed by the toxins released by the dying bacteria. This initially made me worse, causing my red blood cell count and platelet count to drop and me to get sicker including fainting while working at the hospital (not something I recommend!). Again tests for all the "normal" bugs were negative so I took some time off to recover, but I didn't get better as I and everyone involved assumed I would. Then I developed a classic bull's eye rash and when I showed it to the American doc working at the hospital he was able to tell me I was most likely sick with a rickettsial infection (Lyme's family). So we switched to a different antibiotic and while I wasn't as sick as I was initially I continued to have fevers and other symptoms. So over the next month I traveled out to Malaysia where they removed and tested a very swollen lymph node from the back of my right leg (the original bite had been behind my right knee) but were still unable to make a specific diagnosis. So it was onto to Singapore where I had my initial positive Lyme disease titer but we overlooked it because it was borderline and because confirmation would have required follow-up testing.

Finally in May I headed back to the US for some rest and more medical testing. Imagine showing up in several doctor's office and reporting that you had recently been living in the jungles of Indonesia and now were sick. They pulled out the maps and books (literally) and ran pretty much every test they could think of and they were all negative. So they decided to treat for the most common culprits including malaria, just in case. After a month I was feeling better so I headed back to Indonesia to finish my two-year term. While I never felt back to my 100% I was well enough to work for the most part as long as I took regular times to rest. As you can imagine this was a time of physical, emotional, and spiritual struggle.

Over the next several years as I completed my term in Indonesia and then spent a year in the US working and served in Indonesia again for 6 months I settled into a chronic pattern. While I was not at 100%, I was OK except for a pattern of flares following stressful times or travel and then better after a time of resting. I continued to have what I considered symptoms of an infection including fevers, sore throats, and swollen lymph nodes as well as chronic joint and muscle pain. No doctor could figure it out though and most said I probably had chronic fatigue after battling whatever I had been initially sick with. This didn't ring true for me but I slowly learned to manage my own health including times for rest and trying to prevent flares. Then in the spring of 2007 I moved to Everett and began working with a new doctor. I figured she would be like the rest but she took one look at my history and asked me if anyone had ever tested me for Lyme Disease. Together we searched the records and found the test from Singapore. She then asked me if I had ever heard of Chronic Lyme Disease. She just happened to be from Connecticut, where Lyme was originally found and named. Through her I connected with a team experienced in treating Lyme Disease who did more testing and confirmed the diagnosis.

Over the next three years I was treated with long-term high-dose antibiotics and supportive therapy. Initially I felt worse but slowly and surely there was improvement. I was blessed with an amazing team including my doctors (including a naturopath) and supportive family and friends, who even went as far as to give me shots and IV treatments at home. Finally in the summer of 2010 after several months without a flare I was declared to be in remission and able to stop treatment. 

Imagine 4 shots of this a week for 6 months!

Sometimes it resulted in messes like these

Unfortunately, almost exactly a year later the symptoms started again reoccurring in increasing frequency and severity, so in November of 2011 I went back on antibiotics. Symptoms have again decreased and it has been several months since I had a bad flare, so as of Wednesday we have stopped the antibiotics. While this will never be a bug that I will most likely completely beat (although we can pray it does) my docs agree that living in Indonesia is OK as long as I have access to the medications I need and plan regular periods of rest into my schedule. Thankfully the antibiotics are easily accessible in just about every country in the world.

The other issue that I have dealt with both times is Hashimoto's Thyroiditis (auto-immune disease of the thyroid - basically your immune systems attacks your own thyroid). Over the past several months I have gone gluten-free and that combined with treating the Lyme Disease has decreased the antibody levels from greater than 500 to less than 20, which is normal! Hopefully with a little time to heal, my thyroid will resume producing its normal hormones on its own and I won't have to take medication daily.

Please continue to pray that the Lyme Disease will stay in remission and I will stay as healthy as possible. There is obviously a lot of stress in preparing and moving to another country, so please pray I will take the time I need to rest to help keep myself healthy. Pray also for the emotional and spiritual struggles that accompany a journey like this. It is easy to become discourage, when my body doesn't keep up with my hopes and plans. It is also tempting to be frustrated with God at times, although time and again I have seen His faithfulness and provision. If you want more information about Lyme Disease you can check out ILADS or to watch a movie/expose just go to Hulu and search for Under Our Skin.