Monday, November 30, 2009

The Peace of Healing

As I begin my last infusion of the day, I am listening to Pandora internet radio. The music is comforting my soul and I don't feel as far from family. Kenny G brings memories of Chicago Christmases.

I think this is the slowest I've ever taken life. I am at peace knowing I am doing the best I can to give my body it's best chance to fight this disease. My liver enzymes were better this week and my picc site looks great. I am exhausted from the treatments, but I am not fighting it. Just sleeping and setting alarms when needed. A bit of knitting here and there. I don't think I'll be home for Christmas, but it will still be special because of the gift of the chance to beat this disease.

The hardest part of treatment isn't the fatigue or physical pain of the herx reactions. It is letting go of the regret of lost moments. Kids grow so fast. Chris called on Skype so I could see the new haircut our 12 year old gave him. She did a nice job! I smile knowing that when the going gets tough, my family will be able to handle just about anything.

Rosemary scents the room, a tiny "tree" from my daughters. It makes me smile.

Wishing you peace this holiday season.

Monday, November 16, 2009

Better Days to Come

My Lyme numbers are now in the danger zone as I wrestle with double vision, nasty headaches, tenderness in various bones in my skull, difficulty walking along with other neurological issues and finding the wrong word slipping into my sentences several times a day. Today I received a new picc line and the first infusions of antibiotics, while I rolled a skein of beautiful yarn into a ball, a gift from a dear friend. I love the color and softness and look forward to creating something special. As I neared the end, the tangles I never seem to avoid became more challenging, but I really loved the yarn and didn't want to lose any so I kept working to untangle each snarl. Finally, almost magically, I was at the end, which you see pictured above in my lap and the analogy to my fight with this disease did not escape me. There is no simple fix when you have neurological Lyme. I'm still working on the snarls and though I miss my family dearly, I know that each infusion brings hope of better days to come.

The girls cheered when they saw my first infusion tonight on Skype. Three infusions down. There are some Borrelia that are in for some serious trouble tonight.

Saturday, November 7, 2009


I see two problems with diagnosing a patient with Lupus before accurately ruling out Lyme disease. First, the treatment of Lupus by design compromises the immune system, which in a Lyme patient cripples its ability to fight the Lyme bacteria. Symptoms worsen, sometimes resulting in irreversible damage. Second, the drugs that compromise the patient's immune system make it virtually impossible to have a positive Lyme test. This is huge because so many physicians rely on a positive test for diagnosis. In my own case, two early negative Lyme tests were irrelevant because of the immunosupressive drugs I was taking. Four weeks into my IV antibiotic therapy, after all immunosupressants were removed from my system, I tested positive for Lyme disease. If I had not found a doctor who understood this, that test and diagnosis would never have come.

According to Stricker et. al in Future Microbiology:

“…there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies. Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to ‘post-Lyme syndrome’, namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.”
Perhaps this is why, a year after I began treatment for Lyme disease, my ELISA and Western Blot IgM values are still positive for Lyme disease and climb when symptoms worsen.

If you are interested in reading more about the chronic Lyme controversy, Kris Newby wrote an insightful blog for Under Our Skin Chronic Lyme, Real or Imaginary which included the above quote. I pray for a day when science will trump financial gain.

Friday, November 6, 2009

When Did It Begin?

After years of illness, I was finally diagnosed with Lyme disease in November, 2008 and began immediate treatment. Previous diagnoses included Lupus, mixed connective tissue disease, Sjogren's syndrome, Scleroderma, Raynaud's syndrome, posterior orthostatic tachycardia syndrome, migraines, neuropathy, hypermobility syndrome, TMJ, carpal tunnel syndrome, ulnar nerve compression, chronic fatigue syndrome, fibromyalgia, antiphospholipid syndrome, intermittent hearing loss, arthritis, Candidiasis, hypoglycemia, degenerative disk disease, Epstein Barr and human parvo viruses, median arcuate ligament compression syndrome, eschemia, Bell's palsy, chronic sinus, ear and urinary tract infections, trigeminal nerve involvement, joint pain, costal chondritis, mild foot drop and possible vasculitis of the small blood vessels. M.S. was on the horizon. I still flirt with symptoms of M.S..

I am often asked, "How did you get Lyme disease?!"

I will never know when I was exposed or if I have been repeatedly infected, but I've certainly had ample opportunity. As a child, I spent five summers from the ages of 5 and 10, camping for entire summers while my father worked on his Master's at Central Michigan University's Biological Station on Beaver Island. Covered from head to toe with black fly, no-see-um and mosquito bites, it was a fabulous childhood and a pivotal influence on my adult life.

Our family spent the summer of 1976 camping while my parents cleared land and built their home in a wooded lot adjacent to a field frequented by deer. How I loved to walk with my dog and ride my pony through those fields while growing up.

Had we been wrong about the ringworm on my stomach? Could it have been a bull’s eye rash?

What about the run-in with ticks on a hike in the Porcupine Mountains in 1982?

During the fall of 1983 at Michigan Technological University, I spent a night in the woods with fellow classmates as we helped with an off-road rally, the Press on Regardless. I awoke days later, running a fever and covered from head to toe with tiny spots resembling a Rocky Mountain Spotted Fever rash. The campus physician was puzzled by my illness. My son, born a year and a half later was 9 1/2 weeks premature.

Add another red flag to the summer of 1989. I was taking field classes at the University of Michigan Biological Station. A chipmunk was a continual visitor to our dorm room. Did it carry a tick into our room? During that summer, our class of 15 students and three instructors headed to Sugar Island for an overnight field trip. The group stayed in one cabin and some of us opted to sleep under the stars. I still remember the beautiful stars and my giggles as my sleeping bag kept sliding toward the lake shore. When our class was preparing to return to the Station, I became violently ill with what I thought was flu or food poisoning. However, I was the only one who became ill. I now know that a summer "flu", especially if no one else becomes ill, is a very red flag.

Within a few years, I could hardly walk due to arthritis in my right knee, I had daily sore throats, frequent respiratory and UTI infections and lost my voice at the slightest cold. A walk-in collision with a school bus mirror resulted in post-concussion syndrome, two weeks of missed work and months of short-term memory loss. I was bothered for many months, nearly a year, when an itchy sore on the back of neck in my hairline refused to heal. Students would remind me to eat protein when I would become weak and pale.

Our current home backs up to a beautiful field. Deer frequent our backyard.

I am a biologist and a nature photographer. Much of my life has been spent surrounded by nature. It is a part of who I am and what I love. My husband sides with the MTU theory. The truth is that we can only be sure of one thing. I've had it for a long time.