It's a new day, day 101. The sun is out and the snow is fresh and beautiful. I've finished my last infusion. My nurse will be here shortly to remove my picc line. It feels a bit like being in a life boat and losing your paddles. I'm not worried about having my line pulled. It's painless. It's just that in the past, I've slipped on oral antibiotics before. That leaves one a bit nervous. This was my third picc line. Hopefully, it will be my last.

How do you know when it has been long enough? The double vision has subsided, my liver enzymes need a break and I've been away from my family for a long time. It's enough.

So tomorrow, I am heading home to begin the next phase of this journey. For those of you who know my girls, please keep it a surprise. They will be so excited! I'm looking forward to trying the "toaster" my husband ordered. Yes, I know, it looks like a gimmick from the fifties, but I was intrigued by Ashley's January post about FAR Infrared Saunas and am hopeful my our new sauna will provide an added edge toward healing. My husband has already fallen in love with it. I can't wait to return to the pool at physical therapy and now that I'm thinking of water, three cheers for showers where you can get both arms wet! Heavenly! Home. I can hardly wait! It's going to be a good day!

Just one

"Do you have any questions? You may ask anything."

During the fall of 2008, just moments after learning I had Lyme disease and several co-infections, I was reeling with emotion. Relief to finally have an accurate diagnosis, anger it had taken so long, validation of various symptoms and anomalies in blood work, frustration that the Lupus treatment had worsened symptoms, sadness about being away from my family for treatment, anxiousness to feel better, and a pit in my stomach at the possibility our daughters also had the disease.

"Where should we take them?"

Their symptoms? Daily headaches, joint pains, severe asthma, severe sleep apnea, fatigue, insomnia, frequent respiratory, ear and urinary tract infections. Our oldest was losing ground cognitively. Our youngest had been born with severe intrauterine growth retardation, resulting from a problem with the placenta. Entering this world at 2 pounds 9 ounces, she had been fighting with a compromised immune system since birth. She was born with a rare eye defect known as primary hyperplastic persistent vitreous that had resulted in the removal of a stalk of blood vessels and then her lens in her right eye. She had worn a contact in her right eye since three months old, contact and bifocals since 5 yrs. By the age of two her growth had nearly stopped and she began nightly growth hormone injections. Lymph nodes in her neck were enlarged. She had severe sensitivity to environmental allergens that would trigger rages and horrible headaches. Autistic-like behaviors included flapping her hands like a bird. Sometimes we would get frozen in the grocery store, I with milk bottle suspended in mid-air because she would know that it had to go in one perfect place in the cart to avoid becoming very agitated, but she was unable to tell me where to put it down. Her drawings often a flurry of black scribbles.

We were fortunate my doctor had pediatric experience. Our oldest tested positive for Lyme disease, Hashimoto's thyroiditis, HV6, CMV and Epstein-Barr. She began immediate treatment. I remembered a time a few years earlier when her platelets dropped and she was evaluated for autoimmune diseases. The specialist took me quietly aside and told me it was not unusual for a child to assimilate the symptoms of a chronically ill parent. Ironically, her symptoms mirrored my own because we shared the same disease and viruses.

Our youngest joined our "picc team" three weeks later. Fortunately, my husband did not have the disease. It hasn't been an easy road for any of us, but the girls have come so far in their treatments, it warms our hearts and gives us much to celebrate. I'm improving, too, just at a slower rate. Chris and the girls have been so supportive during my third and hopefully final picc line as we continue to strive for a healthy family; a dream shifting to reality with each passing day.

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.

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.

Flaws

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.

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.

A New Path

I needed the the help of a specialist who understood Lyme disease for a definitive answer. Sadly, Lyme-literate physicians are hard to find. They are devoted to helping their patients fight a disease the CDC is hesitant to acknowledge, late-stage Lyme disease. In some cases, they face persecution for diagnosing Lyme and for having too many cases because others refuse to treat. It must take amazing bravery and grace to work to make a difference where the medical establishment has failed. Dr. Charles Ray Jones, the Lyme-literate pediatrician featured in Under Our Skin is an excellent example. Lyme disease can be incredibly complicated. The cases are the toughest of the tough. Organizations like Turn the Corner Foundation are working to make a difference. Their work includes training physicians to accurately diagnose and treat Lyme disease and the foundation is an excellent resource.

The morning of my follow-up appointment, one of my nature photos appeared on the cover of the New York Times. I prayed it was a sign of good things to come. At the appointment, I listened, then cried. I met my parents in the parking lot. More tears. Nearly a year and a half after we first suspected I might be misdiagnosed, we had our answer. I undoubtedly had Lyme disease. The Lyme bacteria had affected nearly every part of my body including my heart, which had developed a rare T-wave flattening and mitral valve prolapse. Along with small nodules in the thyroid, I had a one centimeter nodule close to my spine that would need monitoring. I also had very high viral loads from multiple co-infections. At the time of my diagnosis, I had experienced 71 of 75 Lyme symptoms. A picc line insertion was planned so I could receive IV antibiotics over the next six weeks. I would remain within 45 minutes of the hospital during my six weeks of treatment, hours from home.

I was reeling: relief to finally have an answer, anger that it had taken so long, terror knowing that my children were also sick, sadness to be saying good byes to family and friends for weeks, elation at knowing I had a chance at a better future. In less than a week, I was driving to begin treatment and a new life. I turned on the radio. The election returns were beginning to come in. The third amazing event of the week was unfolding. I woke to a message on my phone from a dear friend,

"It's a new day! You're beginning treatment and we have a new President!"

It was November, 2008.