Posted on Dec 7, 2009 in Blog |

While on vacation over Thanksgiving, I read Amy Tan’s The Opposite of Fate; Memories of a Writing Life. I didn’t read her bestseller, The Joy Luck Club. But I knew Tan had Lyme disease and I wanted to learn from her. I wanted to read her experience, strength and hope. Her Lyme story didn’t surface until the final chapter (starting on page 367), but by page 23, I was busy highlighting: ‘We were both easily moved to tears, for we felt deeply and were warmly touched by the warmth of the love that so many friends freely gave to us.’

I read the book slowly; I didn’t want it to stop. Amy and I had become friends in just 23 pages. So by the time I reached page 367, I was dreading what I knew was coming very soon: the end of the book. And then, on page 372, the words popped up from the page. ‘She [the doctor] wanted to do more tests so we could rule out a tumor in my pancreas.’

I don’t have a tumor in my pancreas. But doctors thought I did starting in 1985.

I don’t think it really matters, except to satisfy my curiosity, to figure out when I contracted Lyme disease. We know I had it at least five years ago when I tested positive for h.pylori during an endoscopy. Unfortunately, my gastroenterologist didn’t know that h.pylori is a co-infection of Lyme.

But I think I have had it since I was 18 years old. My senior year of high school, I contracted viral meningitis. Just a few months later, in college, I was sleeping 23 hours a day. I had to drop out of school and come home to many blood tests that ended up showing nothing. Years later, I suspected that it was Chronic Fatigue Syndrome or Epstein-Barr Syndrome. My physicians didn’t know about those two viruses in 1981.

I struggled with depression throughout college and numerous viruses that couldn’t be clearly diagnosed or cured. In 1985, I went to a doctor complaining of diarrhea, upset stomach. I thought I had another ulcer. A few days later, I received a call asking me to return to the office for more tests. No, it couldn’t wait. That was the first time I was tested for pancreatic tumors.

I was tested again in 1988. That time, I was sent to NIH in Bethesda. They did all their tests, and on December 27, 1990, I was told that somehow, my tumors had ‘disappeared.’ I came home thanking God for the miracle He just bestowed upon me.

In 2005, I went back to the doctor complaining of diarrhea and abdominal pain. An endoscopy showed the h.pylori infection, but my pancreas was putting out massive levels of gastrin again, indicating those tumors again. And again, the final tests showed no tumors. On my chart, the doctor wrote, ‘Autoimmune issue?’

It’s just another piece of my puzzle. But here’s the kicker and why it’s important for me to know when I developed this disease:

For the past three weeks, our 16 year old son, Stephen, has been sick. After five antibiotics, and some blood work, we found out that he has mono (for the second time), strep throat, a sinus infection, and an ear infection. It was only after two shots of Rocefin and another oral antibiotic that we started to see improvement.

And today, we got the rest of the bloodwork back. Stephen tested positive on five DNA strands for Lyme disease. We tested positive on the same four of five strands. Luckily, I see my LLMD appointment is on Thursday, so I will take Stephen’s results in with me to see what our next step is.

Does it matter if he contracted Lyme in utero? Probably not. Feeling guilty isn’t going to do anything in a positive way for anyone. As someone said to me earlier today, ‘It is what it is.’

I guess I just want to know. No reason. I just do.

But I also need that my energy needs to focused on the healing portion of this journey. And it’s much easier this time around . . .

P.S. – Jeff is getting tested on Thursday as well.