Parasites, Part One

Many people have asked for more details concerning my parasites, so I've decided to write some of my story out on paper. I won't go into all the gory details (this would be "rated R" if I did that!), but will hopefully give you a clear picture of what has happened.

Sixteen years ago I served as a BSM summer missionary in the bush of Mali, West Africa. I spent three months living in a shack with no electricity or running water -- it was quite an adventure! Every day the temperatures would soar to well over 100 degrees, and staying cool was not easy. So when some African friends invited me to go swimming I couldn't resist. (Now, picture me back-stroking in a muddy pond where several villagers defecate on a regular basis.) I didn't know it at the time, but hundreds of microscopic worms (schistosomes) had burrowed their way through my skin and made their way into my blood stream. A few weeks later I developed Katayama Fever and thought I was going to die. I was misdiagnosed with Malaria, treated, and was back in the U.S. a few days later.

Over the next year I struggled with stomach pain and a lot of bloating. The doctor in Montana did some blood tests and that's when the nasty bugs were first detected. I was treated for the parasites (three pills in one day) and there was absolutely no follow-up. The symptoms returned a few years later, but the doctor in North Carolina said I had IBS (yet another misdiagnosis -- you'll see that this happens a lot in this story!). I went ahead and lived with the symptoms and thought little more about it. Parasites didn't cross my mind because I had been treated already.

Several years passed with few symptoms -- until three months into our first term in India. The pains began in my groin area and were very sharp and painful. The urologist suspected kidney stones, but the ultrasound revealed nothing. The sharp pains returned a few weeks later, but were now in my prostate as well. They did literally dozens of tests (blood, urine, stool, etc.) and a cat scan. Nothing. According to all the tests I was absolutely normal. However, the pain quickly became constant and much more intense. The urologist said I had "chronic pelvic pain syndrome," which means he has no clue what's wrong with me. He told me there was nothing he could do and referred me to a pain specialist and psychiatrist (for counseling).

I went to two other urologists in India and, after seriously violating me, they said the same thing as the fist urologist. The pain quickly spread down the back of my legs and into my feet. My lower back began to hurt, and then the pain got into my neck and down my arms and into my hands. My whole body hurt -- all the time, and sleeping became nearly impossible. The pain specialist had me on several different pain killers but none of them seemed to help. In our search for a drug that would work I began to have allergic reactions -- one reaction put me in the hospital for five days with a full-body rash.

I finally got permission to see doctors in Thailand, but they told me my situation was "hopeless." One doctor actually tested me for Schistosomiasis, but the results came back negative. I returned to India and things actually improved for about a month, but then got much worse than before. I saw a neurologist who did more testing to rule out MS, including two MRI's. Again, nothing. On paper I was very healthy. Despite the paperwork, the pain got so bad (especially in my groin area and rectum) that I could not sleep at all, except for occasional napping. Language-learning came to a halt and I felt useless. I spent most of my time sitting in a large bucket of hot water to ease the pain. I cried out to God constantly, day and night, pleading for mercy and healing. I read the Bible cover to cover, searching for answers and a word from the Lord. I had missionary colleagues and national friends come and pray over me. Things only seemed to get worse, and God seemed very distant and quiet.

I took a stress test and completely failed it. The member care leadership recommended I return to the U.S. for better medical treatment. Our company graciously allowed our whole family to return to Montana and continued our pay and insurance while I sought answers and treatment that worked. The mission house at Emmanuel Baptist Church in Billings opened up literally a week before we arrived and we had a place to stay. They had also purchased warm clothes for our family as winter was just beginning. Lifeway Church of Billings brought us meals for the first few weeks as we made adjustments and set up appointments with doctors. We were overwhelmed by the love these two churches showed our family! God was ministering to us through His people.

In a matter of a few weeks I had appointments with a urologist, a neurologist, a GI doctor, and a rheumatoid specialist. I had dozens more tests done, including two more MRI's and a colonoscopy. My general practitioner finally said, in frustration, that there was no proof that anything is wrong with me. He wondered if I were crazy. That broke my heart. I wasn't making this pain up in my head -- it was very real! And no one had any answers!

Four months of heavy antibiotics seemed to help some and I finally began sleeping through the night, though I was still struggling terribly with pain. I changed my diet and began taking several different vitamins at the request of friends. I did feel better, but the pain was not going away. In fact, I began to have muscle spasms all over my body all the time. New symptoms like this began to develop all over. Stomach pain became unbearable at times, and finally I began to pass blood in my stool. That really freaked me out, so I had another colonoscopy. And that's when they finally found it.

The doctor noticed "worm holes" in my colon! He took a biopsy and it revealed that I indeed had parasites (Schistosomiasis) -- the same parasites I picked up in Africa all those years ago. They had sixteen years to breed and multiply in my body, working their way deep into my muscle tissue and organs. I read a few articles online that said that if these parasites (blood flukes) are left alone for years, they could do serious damage to a person's body. The biggest threat is cirrhosis of the liver. The eggs of these parasites constantly let off toxins in my body that cause inflammation resulting in tons of pain. They can go undetected because they can hide in places like the liver or colon or burrow even deeper into muscle tissue. That's why my tests always came back negative for parasites.

I was referred to an infectious disease doctor here in Billings who was able to give me the treatment (a one-day dose of a drug called Praziquantel). I took the drug and within two days felt 80 percent better. It was a miracle! However, the pain began to return, so he ordered another dosage. Again, I felt much better with no symptoms, but after a few weeks the pain began to come back. I took yet another round of the meds, this time at twice the dosage as before, and for three weeks I felt absolutely no symptoms. I felt like I was a new man! However, the pain did start to come back again. The doctor told me there was nothing he could do at this point -- Praziquantel is the only known treatment. He admitted that he knew nothing about Schistosomiasis, but he was also unwilling to do any research or help me find more answers. I'm now on my own to try and figure out how to completely eradicate these bugs from my body.

So, as I write this story I am one week away from flying to Toronto to begin a new assignment. I am 80 percent better, which is amazing. I want to be 100 percent better, and I wish I knew of a doctor who knew more about these parasites. I'm praying that I will find such a doctor/specialist in Toronto. I'm still struggling with pain, though it's not nearly as intense as before. I trust that God will completely heal me in time.

I will write more soon on how this experience has had an impact on me emotionally and spiritually. I am so grateful for how the Lord is working everything out for the good and for His glory. This is a beautiful story and a very important part of my own life story, because God is using all of this to mold me and change me.