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.

Too Far Down the Rabbit Hole

What followed was even more amazing. Olivia began saying we had bed bugs, as that’s where the itching took place. She named them Darlie and Marlie and began to draw cute little pictures of them. At one point, she had me hold a knitting needle up to her back toward the end of a treatment so Darlie and Marlie could jump on and she carefully carried it out for Daddy to see.

Most amazingly, Olivia began sleeping soundly and she started to grow for truly the first time in her life. The enlarged lymph nodes on her neck decreased in size and her vision improved. Her doctors were both puzzled and amazed. We quietly celebrated, knowing they would be unlikely to believe us if we had told them our story.

I wish this had been our happy ending. We truly didn’t care what name we gave to the illness that was making us sick. We just wanted desperately to get better. Unfortunately, gradually we all lost ground, Olivia with rages, extreme sensitivity to allergens, and finally with a low frequency hearing loss. When she was in a rage, all I could do was to hold her and repeat over and over she was safe. It calmed her. She became a mouse or a bird whenever nervous or frightened. Making eye contact became more and more challenging. Math became very difficult for Mikayla to comprehend and she endured daily headaches, and much joint and muscle pain. I had an onslaught of neurological symptoms, with grasping and walking becoming frightening challenges. We were too far down the rabbit hole. We needed to know. Were we battling Lyme disease?

An Alternative Approach

The naturopath told me it was safe to use the oil anywhere I had pain. I was tender along the mastoid bone behind the ear. My husband suggested I swipe it with oil. We turned out the lights to go to sleep. Almost immediately, I felt as though I were in an Indiana Jones movie with tiny “worms” crawling right through my skin, similar to the first experience with oil on my spine, but much more intense. It was completely freaky. I asked my husband to turn on the light to make sure he didn't see anything. It’s amazing he didn’t just pack up at that point. I never had that intensity of a reaction again. Just days later, I developed the massive ear infection. Did it contribute? I don’t know. The timing was coincidenta, yet what physician would have believed me? I was having a hard enough time with just the medical facts.

Olivia had developed sleep apnea. She would wake, hypoxic and terrified. We were scared, too. Chris wondered if low oxygen levels were waking her? He was right and the apnea severe. She had her tonsils and adenoids removed with little improvement, than developed one ear infection after another, five in six months or perhaps one that never completely went away. Each new round of antibiotics, she would wake, screaming in agony, “Owie, owie, owie,” over and over again, grabbing her tailbone and base of her neck. We had no answers.

Then one night, Olivia rubbed my back after a particulary itchy session to make me feel better. She woke in the night screaming, just as she had with the antibiotics.

I took her to the pediatrician, only to learn that though her ears were red, she did not have an infection that warranted treatment. The pain had another source. It was on the way home the answer struck. My oils had caused Olivia to experience a Herx reaction. The realization that Olivia had Lyme disease, too, hit hard. She needed help, but where should we turn?

On the heals of so many doctors refusing to listen, the answer came easily to my husband, toward the one person who was helping me, my naturopath.

I called and explained what had happened and we were in her office the next day. She believed Olivia also had Lyme disease and wanted to begin a milder mixture of essential oils. Instead of her spine, we were to place it around the soles of her feet.

That night, Olivia lay on the bed while I applied the oil. She sat up and began looking around, saying there were bugs in the bed that were biting her. They were on her legs, her back and finally her neck and back of head. I told her it was okay and it would only last for about ten minutes. We did a crazy dance we called the itchy dance and giggled until the itching stopped. She lay back in bed and turned to us with a surprised look on her face and said, “I can hear!”

Then she lay down and fell into a peaceful deep sleep, the first we had ever observed.

My husband turned to me and an expletive slipped from his lips. It wasn’t that he hadn’t believe me. It is just that with an adult, how much was psychological? There was always the argument that I was getting better because I wanted it to work, though that argument certainly had not held up with my previous treatments. Olivia had no preconceived notions of what to expect or what would happen as a result of her treatment. She knew only that we had rubbed something on her feet. It was simply amazing!