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

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.

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.

Tuesday, October 27, 2009

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.

Monday, October 19, 2009

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?

Thursday, October 15, 2009

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!

Wednesday, October 14, 2009

Finding Relief in Alternative Medicine


While my condition gradually worsened, a friend with Lyme was enjoying some relief of symptoms under the care of a naturopathic doctor, who had helped another with similar symptoms that proved to be hormonal in nature. We heard of a third case of Lupus not responding well to conventional treatment, where the patient was improving under the care of the ND.

The specialists had tried for two years to help me with little avail. This woman had taken three individuals with similar symptoms, correctly disseminated them and helped them all. I made an appointment to meet with her. I wanted to hear what she had to say.

I had never visited a ND, but just five minutes into our visit, I realized I had been naive. She, herself, had suffered a life-threatening illness and had been given months to live. She had a young daughter and wasn’t ready to give up. She turned to an ND for help and the treatment worked. After recovering her health, she went back to school, receiving her degree in naturopathic medicine. I came to the sudden realization that medicine didn’t start with modern medicine and the pharmaceutical companies. It has been practiced for hundreds of years. After discussion and examination, this ND was convinced I had Lyme disease.

Her first objective was to help me to eat again. I started by grinding foods in a food processor and adding an enzyme powder to aid in digestion. Both helped. We also began treating the Lyme disease with essential oils and ledum (rosemary). Essential oils are a mixture of oils, like mandarin and peppermint with natural antibacterial properties which are rolled on the spine where they are quickly absorbed. With each treatment, the skin would redden, burn at the base of my neck and I would experience intense itching and a sensation that tiny “worms” were crawling along my spine. It was unlike anything I had ever experienced. The scientist in me asked my husband to try. Nothing happened.

“Kim, that’s because I don’t have Lyme disease,” he said.

Within a week, the tremors in my middle fingers had significantly improved, providing hope of better days to come.

Tuesday, October 13, 2009

Weird Became My Middle Name

My husband banished the phrase, “It could be worse.”

Even without saying the words, I was plagued by strange symptoms. My knee locked as I was getting out of bed, days after ear surgery, leaving me in agony. I thought it was a dislocation. This had been happening with my hips when sitting due to the hypermobility syndrome, but this time I had torn my meniscus, a bucket handle tear, locking my knee.

The surgeon agonized over the best solution. He was concerned I had reinjured the ACL, already repaired in 1982 and 1992 when symptoms in the knee had made walking a challenge. A third ACL would be a serious challenge. If another ACL reconstruction was necessary, we had to decide between using cadaver tissue or quadriceps tissue.

Cadaver tissue scared me. My body was rejecting anything foreign and I feared this would be no different. My rheumatologist feared the quadriceps tissue removal would be too invasive and recommended cadaver tissue. My orthopedist, after much thought and research opted for the latter, if needed. Fortunately, neither was necessary. The ACL was saved by tightening with a 'shrink wrap' technique and the meniscus repaired.

As I healed, I knew something wasn't right. Within seconds of lowering my leg, my foot would swell, turn blue and cause pain. For months I suffered RSD like symptoms, forced to keep the foot elevated. An EMG confirmed nerve damage to both the femoral and peroneal nerves. My quadriceps atrophied.

Physical therapy provided some relief. Though I didn’t gain significant strength, pool therapy slowed my decline. Within a year, I was experiencing severe carpal tunnel syndrome in both hands and I had ulnar nerve entrapment. I underwent two carpal tunnel surgeries and an ulnar nerve release with little improvement. Other nerves flared. I developed mild foot drop in the leg that had surgery and shortly after being fitted for a brace began to experience problems with the left which were corrected by orthotics. A diagnosis of MS was on the horizon. Walking became a challenge. I bought a walking stick, with the reality I could wake one morning unable to walk.

Yes, I know. Weird became my middle name. Some probably though it was my first.

Monday, October 12, 2009

My Response


This morning a story on NPR, How the Modern Patient Drives Up Health Care, made me cringe and left a twinge of fear. I feel that the message especially puts Lyme patients at risk because of the resistance of doctors to recognize and treat the illness. When it was over, I turned to my twelve year old daughter who had also been listening and said, "If we had just accepted our symptoms as something that could not be changed, we would all still be very ill."

She agreed. Thankfully, we researched, advocated, and we're slowly regaining our health.

I left the following comment at NPR's website.

"In 2004, I was misdiagnosed with Lupus. The Lupus medications compromised my body's ability to fight my true illness, Lyme disease, as well as compromise the tests for Lyme. If I had simply accepted my original diagnosis and decline, not analyzed my blood work and symptoms on the Internet, I may not have lived to write to you. An earlier diagnosis would also have saved countless tests that were ordered by my physicians during that time. I was fortunate to have been trained as a scientist, yet it still took years to reach an accurate diagnosis for myself and my daughters. Doctors are not infallible. If something is wrong and you are not responding to treatment, you must educate and advocate for yourself. I recognize that a passive patient may be easier for a doctor to treat, but doctors should be open to accurate relevant information. Both physician and patient will be better for it."

My best to all of you.

Sunday, October 11, 2009

Divine Providence II


Sometimes illness proves a blessing. As sick as I was, the respiratory infection yielded valuable clues as to the source of my illness. With a weakened immune system, the Lyme symptoms came through loud and clear. The infection also left an ear infection in it's wake that took a serious turn when it spread to the mastoid bone behind my ear. Turning to an urgent care for help and finally ending up in an ENTs office where my ear was drained of infection and a tube surgically added for drainage. High dosage antibiotics continued. The ENT later confided I had missed a hospital admission and PICC line antibiotics by the narrowest of margins. I started to feel better, for the first time in years. My coloring and energy level were improving. I couldn't help but feel that perhaps God had weighed in on the matter of whether my body needed antibiotics. Whatever was wrong most definitely responded to antibiotics. Even with a horrible infection, I felt better!

Thursday, October 8, 2009

Divine Providence

Deep into this nightmare, it was natural to question the presence of God. I used to joke that there must have been something I did that really made Him mad. Though even at the worst of times, especially at the worst times, there were amazing moments that changed our lives for the better.

Olivia’s doctors and nurses were surely blessings. Our friends, during the first five months, before my long-term disability went into affect, were amazing. Countless dinners arrived at our door. One night, a professor from Chris’s college rode up on his motorcycle to deliver a loaf of warm bread he had just learned to make. We were invited to dinner with a few close friends, which turned out to be over five hundred very caring people. The culinary arts students at the High School hosted an additional benefit lunch with the leftovers.

A day before the dinner, my life became an episode from the 1994 television show, Touched by an Angel. A beautiful card came in the mail, resembling a wedding invitation. As I opened it, we puzzled over who might be getting married? Instead, it was an invitation for a cut and style at a local salon at significant discount. My husband said, “Call her.”

I explained my situation and she made an appointment for me the following morning. I walked in the door and instantly, Tina, herself battling Lyme disease, knew something was terribly wrong. At 5’ 9”, I was fast approaching super model dimensions. We talked as she cut my hair, then she stepped away from her island and called her husband, asking him to run home for a book for me. It was a book written by Jordan Rubin, a young man with Crohn’s disease called, The Maker’s Diet. I left her salon with a new book and new friends.

I found The Maker’s Diet fascinating for its blend of science and Christianity. It is rare for the two to meet and they did in this book splendidly. Rubin, a religious man, became extremely ill with Crohn’s disease and like me, was having an impossible time eating. It occurred to him that a huge increase in autoimmune cases in recent times might be related to our processed diets and he began researching and eating a Biblical diet, with healing results. I was pleasantly surprised to find I had already stumbled on a few of the same foods: organic dairy and baking supplies, oatmeal, fish, and pumpkin. I began adding probiotics: kefir, olives, stuffed grape leaves, fresh mozzarella. To my joy, I found I could tolerate all. I also read that flax seeds were excellent for inflammation of the gut. I began stirring a spoonful into my yogurt each day and my abdominal pain improved. I was learning how to eat to avoid the pain. I still couldn’t eat a “big person’s” diet, but at least I was holding my own!

Wednesday, October 7, 2009

A New Doctor

During the spring of 2007, I turned to my dermatologist for intelligence and honesty. I was physically losing ground with no clear explanation of why. I had developed a very itchy bump at the base of my hairline and remembered it as the same place that had been itchy and refused to heal for months and months years earlier; a likely spot for a tick bite. It was feared I had both Lupus and Lyme because the ANA was so high. The advice: pack the family up and head east.

The appointment with infectious disease yielded little help. Symptoms were ignored while much emphasis was placed on a positive Lyme test. I tried to explain my concerns about the number of friends who were ill at a field station we attended. Class trips to the Michigan's Upper Peninsula, students and researchers coming from all over the country, all over the world, the chipmunk and mouse populations on campus. His question, “But are they white-footed mice?”

When an article came out just weeks later discussing the explosion of white-footed mice at the field station due to global warming, I sent a copy to their office along with a note, “Yes they are. : )”

I never heard back, not about test results or the note.

At my neurologist appointment, I expressed concerns about a misdiagnosis. To my shock and horror, he repeatedly screamed, “You do not have Lyme disease!"

I managed to walk out of the office in front of everyone who had overheard before dissolving into tears in my car. I vowed never to step foot into the office again.

My sister called. While fighting breast cancer, she had developed a few unexplained autoimmune issues, as well, and suggested I call her rheumatologist. Her general practitioner had been growingly concerned about my health and felt it was imperative I get another opinion. I called her rheumatologist’s office and after a lengthy discussion with the PA was told, “I could head east, but she truly felt my sister’s doctor could help me.”

I had not been working since 2006. Money was of concern. If I were to see this doctor, I could stay with my sister for appointments. I decided to give her a chance. My dermatologist made the referral and the rheumatologist expedited the appointment because my ANA was so high.

I told my story over from the beginning. For those of you who have been in this position, you know just how difficult that is, but this time to a doctor who listened compassionately. The one point my earlier doctors were missing was that I had a family I loved, young children who needed me, and a loving husband. I wanted to get better. I was very ill and she would do her best to help me. She ran a lot of new blood work, with one startling surprise.

My ANA was normal! How did an ANA (1:2560) return to normal in six weeks time, virtually impossible for lupus? I had taken two rounds of antibiotics for a severe respiratory infection and sinus infection, my only change in medications. If my blood work had been elevated because of the combination of Lyme bacteria and human parvovirus, antibiotics knocking down the Lyme would remove one of the two factors necessary and potentially result in a normal ANA. Her lab work indicated elevated human parvovirus, offering further support of the theory. Epstein-Barr levels were also high. Most importantly, I was under a new doctor's care for the next phase of our journey.

Tuesday, October 6, 2009

Abandoned

I turned to the Internet and found a physician, Linda K. Bockenstedt, MD, at Yale who was doing research with Lupus and Lyme. It seemed a perfect match. I approached my university rheumatologist who was open to the idea because she knew the doctor. When the referral came to my home, it was highly biased. According to the referral, I had all of the classic symptoms of Lupus including a prominent malar rash though she had earlier discredited my rash as malar. She also said I was suffering from Lupus-induced anxiety. Money was tight. With such a biased referral, we feared the trip would be a waste of time, money and energy.

At the same time my case was painted as classic Lupus, which just a few weeks earlier had been considered atypical Lupus and perhaps not Lupus at all, my Prednisone was running low. I had been taking it for years and my body no longer was able to make cortisol on it’s own. It was life-threatening if I didn’t take it. Neither my phone calls or the pharmacy’s were answered in repeated attempts to seek a renewal. My local rheumatologist said I was a patient of the physician he had referred me to. On my third call to that office, a nurse answered the phone and the office had no choice, but to fill the prescription. Did this mean they were beginning to question my earlier diagnosis, too, especially since, if I did have Lyme, prednisone was one of the last drugs I should be on?

Our family left for spring break in Phoenix to visit my husband's family. The plane ride was excruciating for me. I was hit by a crippling migraine as soon as we ascended. It would not respond to medication and I was in agony until we landed when it almost instantaneously disappeared. While in Phoenix, I realized I had miscounted my Plaquenil, a prescription I normally received from Medco, a mail order pharmacy. I tried repeatedly, along with the Walgreens pharmacist in Buckeye, AZ, to have the rheumatologist’s office call in a prescription to carry me over. They never did. I knew at that point I was on my own. I suspected it was because they feared a misdiagnosis had compromised my health. Wagons were circled, and backs turned. Fearing a lawsuit, they chose to protect their own rather than care for their patient. Somehow, I needed to find a new doctor, one I could trust, to to provide a critical unbiased diagnosis, but where could I safely turn? I debated this question as I wrestled another excruciating migraine flying home.

Monday, October 5, 2009

The Nightmare Continues


I imagine that the next few blogs will be as difficult for you to read as it is for me to relive and for that I apologize. I have a knot in my stomach even as I type. I have often said, I would not have believed it had we not lived it.

The Monday following our weekend research session left me anxious to share our findings. I called the referred neurologist who just a week earlier expressed grave concerns about my declining health. I told her I thought I might have an answer, Lyme disease. I can still sense the awkward silence and hesitation that followed. Then, in less than five minutes, she stood by the decision of her colleagues that my disease was unexplained autoimmune, complicated by depression of a long illness, complicated by the care of a sick child. In her opinion, Lyme disease was highly unlikely. She then told me she was late to an appointment and hung up. I was left shaking.

Shortly after, I had a follow-up appointment with one of the top rheumatologists in the country and brought up the possibility of Lyme. She told me she had only seen two cases in her entire career. I had not been in a highly endemic area on the East coast. She did not feel it was a possibility, ending the discussion.

My family and friends had participated in local walks to raise awareness and research dollars for Lupus. My husband claimed I was northern Michigan's poster child for Lupus. Just before our research, I had been asked by the Alliance for Lupus Research to fly to Washington, D.C. to lobby for Lupus funding and had already agreed to go, though I was desperately ill. When I first agreed, my parents were terrified because of my illness. My Mom asked, “How can you go?”

I answered, “How can I not?”

Now I faced a huge moral dilemma. What if I didn’t have Lupus? What if it were indeed Lyme disease? How could I lobby as a victim of Lupus? I sought the counsel of my local rheumatologist who assured me I could go to D.C. knowing I had Lupus. In examining my hands, he declared, “Those are Lupus hands.”

I went to Washington, but came home with even more questions about my diagnosis. No one looked like me. At that time, I had shrunk to a size four. I was 5’ 9” with a difficult time walking and a terrible time eating. Those I met had sisters, mothers, aunts diagnosed with Lupus. There seemed a strong genetic component, yet I was the lone case in our extended family. Also, the trend was for one system to be primarily involved. I had multiple systems changing all the time. The Lupus patients talked about their flares. I was sick all the time. I had no break. There was one other woman at the conference who ate as I did. Fortunately, she was one of the organizers, who was as thrilled to meet me as I was to meet her. She made sure I had a refrigerator in my room and helped me find organic foods I could tolerate. She told me her doctor had said she had heightened sensitivities to additives and preservatives and another piece quietly slipped into place. Ironically, a sinus infection prompted another round of antibiotics and members of the conference commented at the end of the physically draining week that I looked better than when I had arrived. I felt a bit better, too. Interesting.

Saturday, October 3, 2009

Beware of Lyme and Fifth's Disease!

We were left holding two puzzle pieces: my "sky high" ANA usually indicative of Lupus and my red lacy rash. Each time I googled “red lacy rash,” Fifth disease appeared. Finally, I googled Lyme disease and Fifth disease and made a startling discovery. A pediatric rheumatologist had published an article in the Journal of Rheumatology, warning physicians to take care diagnosing patients that had both Lyme disease and Fifth’s disease, a common childhood illness characterized by a slapped face appearance and a red lacy rash, because their blood work misleadingly presented as systemic Lupus. My red lacy rash? My flushed cheeks? My lupus-like ANA?! Could the human parvo virus and Lyme bacteria be teaming together to make my bloodwork appear as though I had Lupus?

Though Fifth disease is commonly a childhood illness, it can also be a stealth virus, lurking especially when the immune system is compromised, causing chronic fatique and fibromyalgia symptoms, of which I was experiencing both. If I had Lyme and Fifth's disease, there was a plausible scientific explanation for my elevated ANA in contrast to the Lupus diagnosis. I said, "I bet I have human parvo virus."

Just weeks later, human parvo was confirmed with levels being very high. Also, perhaps more amazingly, after two rounds of antibiotics for the respiratory infection, my "sky high" ANA returned to normal. This made sense if my elevated ANA was dependent on HPV and Lyme. By knocking down one of the two necessary factors down, the ANA returned to normal. Such a reversal in ANA was virtually impossible in Lupus.

We were elated! We finally had answers to countless medical mysteries within our family. Our puzzle was complete, with every single piece falling in place. From a scientific aspect, our family's story was fascinating. Little did we know our battle had only just begun.

Friday, October 2, 2009

Herxing!


In our research, it didn't take long to learn the most dangerous thing you can do for a patient with Lyme disease is to compromise his/her immune system. My immune system was severely compromised by CellCept and Prednisone. Why had I not crashed sooner? I remembered Plaquenil, a drug that significantly helped my joint pain and stiffness, was also an anti-malarial. I wondered if it had been used in the treatment of Lyme disease? Yes, and when combined with certain antibiotics, it was very effective, boosting the antibiotic to super antibiotic status. Had Plaquenil helped temper the negative effects of the antivirals, buying me time?

We learned of the Jarisch-Herxheimer reaction, also known as a Herx reaction which according to Wikipedia, "occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases. The intensity of the reaction reflects the intensity of inflammation present.”

The bacteria that causes Lyme disease, genus Borrelia, is a spirochete capable of causing a Herx reaction. Chris exclaimed, “That’s what happened to you when you had the respiratory infection! You herxed!!”

He was right!! The headache and tingling sensations I experienced up and down my arms, the extreme fatigue, back and neck pain, the sores and joint pains all fit! We looked at each other, shock reflected in our eyes, followed closely by another sudden realization. We finally had the source of Olivia’s unexplained agony each time she started a new antibiotic for the frequent bouts with bronchitis and ear infections. Her screams of, “Owie,” over and over while she grasped the back of her head and tail bone now made sense. She had been herxing, too!

Occum's Razor


While sitting at our computers, we let the questions fly.

Could the Lyme bacteria be transmitted in utero? Yes.

Does it cause premature birth? Yes.

Create problems with the placenta? Yes.

Cause intrauterine growth retardation? Yes.

Cause birth defects of the eye? Yes.

Result in severe allergies and asthma? Yes.

Compromise the immune system? Yes.

We were shocked! We had an explanation not only for my own health conditions, but Olivia’s, too! The astronomical statistics suddenly fell into place.

Olivia had grossly enlarged lymph nodes in her neck. A year earlier, I had become concerned Olivia might have Lupus because we had so many overlapping symptoms. Her endocrinologist had feared cat scratch fever because it would explain her nodes. Lyme disease also caused chronically enlarged nodes. Had we been that close to a diagnosis a year earlier?

Mikayla, also a preemie, had health issues, too; daily headaches, muscle and joint pains, stomach pain, Achille’s tendinosis, asthma and a tendency for bronchitis, her body’s inability to hold up in competitive sports like gymnastics and soccer. I was hit with the reality both girls might be ill, though my husband quickly discounted Mikayla. He was adamant. I finally asked him why?

I’ll never forget his answer, “I just can’t comprehend all of my girls being sick!”

Yet the pieces fit, perfectly. It was as though we had been working on a thousand piece puzzle for years with little success and all of a sudden the pieces were flying into place. At one point, my husband exclaimed, “It’s Occum’s razor!”

I asked what he meant? He said the simplest explanation is often the correct one. The pieces fit because we had found what was wrong. I had Lyme disease. My family had Lyme disease.

Wednesday, September 30, 2009

The Internet Can Be Your Friend

I have never been more grateful for my scientific training. I started gathering my medical records and for one weekend, my husband sat at one computer and I at the other, papers everywhere. It was like a scene from Lorenzo’s Oil where Augusto and Michaela Odone were desperately trying to find a cure for their son, Lorenzo, who was suffering terribly from ALD, Adrenoleukodystropy. Doctors had no answers. They were their son’s only hope at life. We were in a similar search for our lives.

We had it easier than the Odones in 1984. We had two computers and Google, the web search engine. I began with my blood work, using Google to help sort what each test meant, both in purpose and also in results. To my shock, of the ten Lupus tests that had been run four different times over the past couple years, I had never had a positive test! My positive ANA was very high, usually indicative of Lupus. My IGM levels had been elevated on several occasions and it warned on the blood work that lupus and chronic infections of Lyme and Syphilis could be responsible. I ruled out Syphillis.

We looked at more tests. On each of four spinal taps, my protein levels were mildly elevated and climbing, with a few white blood cells in each, consistent with Lyme disease. My general blood work indicated a pattern of elevated white blood cells inconsistent with Lupus. It had been explained by inflammation, but certainly a chronic bacterial infection could produce the same results. Elevated amylase levels, unexplained by the Lupus diagnosis, could be explained by Lyme disease.

I knew there was a controversy concerning Lyme disease in the U.S. and turned to Canada and the CanLyme website for information, hoping to find an unbiased resource. I was startled to see of the 75 symptoms common to Lyme, I had experienced 65! It suggested that if you had more than 20, you should be evaluated for the disease by someone who understood the disease. Many of the symptoms listed, I had experienced during my trips to the ER just weeks earlier when nearly a dozen neurologists had examined me, yet Lyme disease had never been mentioned. Why?

In their defense, one could say my Lyme test had been negative. Unfortunately, a false negative result occurs in 40% of late-stage Lyme cases, which is why a Lyme diagnosis in late-stage Lyme should also be based on clinical symptoms. Though a negative ELISA seemed to satisfy my doctors, it didn't put my mind at ease, due to my overwhelming number of symptoms and especially when I read that Prednisone, a drug I had been on for years, was the last drug that should be given to a Lyme patient because it compromises the immune system. I had been placed on two powerful immunosuppressants, Prednisone and CellCept. If it turned out my disease was indeed Lyme disease, the misdiagnosis had not only robbed me of precious treatment time, but had weakened my own body's ability to fight the disease. Our search continued.

Tuesday, September 29, 2009

Sometimes the Horse is the Zebra II

Now, two people who had battled Lyme were telling me my symptoms matched. My hair stylist was fighting Lyme disease and seemed to know my new symptoms before I walked through the door. Because our symptoms were virtually identical, she wondered if I might have Lyme disease in addition to Lupus while I wondered if her doctor had missed Lupus? Early in our friendship, she gave me a Lyme test kit for Igenix, which my rheumatologist discarded in the trash. At the time, I did some research on my own finding the two diseases were very similar and took comfort in knowing that I was working with one of the top rheumatologists in the country. As my symptoms continued to worsen and my disease pattern mimicked hers, I remember saying later in our friendship either she had Lupus or I had Lyme, because we certainly had the same disease. Now a second person was saying the same thing! The time had come for more research.

Doctors were so insistent on looking for the horse when hearing hoof beats, but what if, just maybe, the hooves belonged to a zebra?

Monday, September 28, 2009

Sometimes the Horse is the Zebra

I had too many doctors, too many egos, with no one willing to be accountable. I was trapped in the middle, passed from one specialist to another, but with no one looking at the big picture. Throw in all of the side effects no one liked to talk about and I was certainly caught in a nightmare with one end in sight. In the back of my mind, I kept thinking how much bad luck could one family have? Statistically, it didn’t make sense. If each event was a separate random event, the odds were astronomical. Could there be another explanation?

A few days after arriving home, I was getting out of the shower and noticed several long red streaks traveling down my spine. I called my daughter and asked if she noticed anything?

She said, “You mean those bright red streaks on your back?”

After the neurologist had questioned my ability to perceive changes, I could have kissed her. I may have! We got a camera and began taking pictures. We recorded the streaks on my back, my hands and the dark veins under my eyes that varied with my prednisone levels.

Then the phone rang, the call that would save my life. My neighbor was checking in on me to see how I was doing? When I described the week’s events, she quietly said, “The only time I ever had a headache like that was when I had manifestations of Lyme disease, I was sweating profusely and I remember my eyes were bloodshot. I’ll be right down.”

In her arms, she carried a brown box filled with files she had gathered over the years regarding Lyme disease. A newspaper article of a young man from Ann Arbor who told a similar story took my breath away because there was a photo of his hands. I gasped, “ Those are my hands!”

Sunday, September 27, 2009

Be Wary of Too Many Specialists

With the involvement of each new organ system, I gained another doctor: rheumatologists, neurologists, dermatologist, opthamologist, optometrist, extra trips to the dentist, vascular surgeon, gastroenterologist, internist, hematologist, orthopedic surgeons, ENT. Liv had an endocrinologist, pediatric opthamologist, pediatric orthopedic surgeon, pediatrician, pulmonologist, a bone geneticist and an ENT. It was not unusual for Olivia and I to have two or three appointments a week, between the two of us. The car was on autopilot: Petoskey, Traverse City, Grand Rapids, Detroit. The appointments alone would have made working impossible.
At a point where eating became nearly impossible, too, I called my internist who was out of the office for the day. A partner agreed to see me. After spending time discussing my case and examining me, he asked if he could be frank?

“You have too many cooks in your kitchen.”

I agreed.

“And each one is prescribing medications. You are getting limited benefits and all of the side-effects.”

I knew he was right. My case was fast becoming a hopeless mess of symptoms and side effects. I had just returned from a disheartening trip to Ann Arbor.



With my immune system repressed, I had been hit hard by a respiratory infection. Doctors added strong antibiotics, but I felt terrible. My energy level crashed. I was hypoxic around the lips and had strange tingly sensations up and down my arms. The night of my birthday, I was struck by an excruciating pain in the back of my head unlike any I had ever experienced. Within moments, I had the sensation of something breaking away and I felt a hot liquid sensation move down my spine followed by pain in one leg. We called Ann Arbor. Fearing vasculitis of the brain, the decision was made for my husband to drive me to University Hospital’s emergency room in the middle of the night. The doctors in Ann Arbor feared if I went to Petoskey, the transfer would take days of precious time and the risk warranted the trip. We dropped our girls off at my parents and I said good-bye, not knowing if it would be the last time I saw any of them. I couldn’t lift my head off the seat.

During the week that followed, I was in University Hospital’s ER three times. Over a dozen neurologists, of varying degrees of education, examined me. At one point, we were surprised when the doctor on call told us the rheumatologists weren’t sure I had Lupus. My husband and I were speechless. Lupus had been confirmed by their very own hospital in January, 2006. I had countless tests, an MRI and CAT scans. At one point, doctors felt I was severely dehydrated due to positional changes in my blood pressure. This didn’t make sense, as I was recovering from a spinal tap and had been drinking non-stop. The pain in the back of my head was excruciating and unlike any I had experienced with a migraine. Even my skull was tender. It hurt to lie on a pillow. If upright, I was in danger of passing out. My eyes were bloodshot and I was sweating profusely. The strange tingly sensations continued along my arms. I developed a spinal headache from the spinal tap that showed mildly elevated protein levels and a few wbc.

At the end of the week, I visited U of M’s top neurologist and rheumatologist. The rheumatologist was convinced the MRI of my brain did not show Lupus involvement in the brain and felt my symptoms were more neurological in nature. When one of the residents exclaimed, “But why is her ANA sky-high and climbing?!” No answer. The same intern asked about my CellCept levels being three times the normal amount? Again, no answer, only a stern look. I appreciated her attempt to find an answer. She had the makings of an excellent physician.

With no answers, I was sent to my neurological appointment, where I was told my headache was ruled a migraine variant and my symptoms were more unexplained autoimmune than neurological; unexplained autoimmune, complicated by the stress of caring for Olivia complicated by depression from my own chronic condition. I tried to explain I was not fighting depression and this was unlike any migraine I had ever experienced. The doctor did not feel it could be vasculitis of the brain because the MRI showed virtually no change from the year before. I shared my husband’s concern that we were running out of time to figure this out. He continued to smile and simply reiterated. When I showed him my hands, which had lost most of their muscle tone in a short period of time, he responded that was how I perceived my hands, though an emergency room doctor had expressed concern about earlier muscle wasting months before. I knew we were running out of time, too, and suddenly I realized these doctors were not going to figure it out. It hit like a ton of bricks. My prednisone levels had been raised to 60mg and my body was reeling from the shock. After holding my emotions together over countless appointments, I started to cry, seemingly adding fuel to the depression argument. I left the office reeling with anger, sorrow, and true fear. I hardly spoke as my Dad took me home, my thoughts spinning.

Saturday, September 26, 2009

Chocolate Chip Pumpkin Cookies



Ingredients

1 cup canned or fresh cooked/mashed pumpkin
1 cup organic sugar
1/2 cup cold expeller pressed olive oil
1 egg
2 cups organic whole wheat pastry flour
2 teaspoons baking powder
2 teaspoons cinnamon
1/2 teaspoon sea salt with trace minerals
1 teaspoon of milk
1 tablespoon vanilla
2 cups organic dark chocolate chips

Combine pumpkin, sugar, vegetable oil, and egg and stir. Dissolve baking powder in the milk and add to the mixture. Stir in flour and dry ingredients. Mix. Stir in vanilla then chocolate chips.

Bake in 350°F oven for 12 minutes or until done.

If you make from fresh pumpkin, be sure to roast the pumpkin seeds when baking the cookies. We like to soak them in a bit of Tamari and roast for about 20 minutes. They aid in inflammation.

Enjoy! : )

Thursday, September 24, 2009

Bad Things Can Happen to Good People III


I taught the day after Christmas break. After 17.5 years of teaching, it would turn out to be my last day. I went to my rheumatologist’s appointment after school and learned if I wanted to be there for my own children, I would need to take a leave from teaching. He felt it was time to seek the advice of more specialists. In early January, I had an appointment with the rheumatologists at the University of Michigan hospital in Ann Arbor. I went straight from my appointment to admissions, where over the course of the following week countless tests were run and rerun. By the end of the week, the following conclusions were drawn. I had elevated lactic acid levels and the doctors believed I was suffering from ischemia of the bowel. They also felt I had celiac artery compression syndrome which would require surgery, but my prednisone levels had been increased while in the hospital and the surgery would need to wait until they were lowered. Finally, they confirmed the lupus diagnosis.

When I returned to see one of U of M’s top vascular specialists six weeks later, he felt the celiac artery alone would not be causing my digestive problems and strongly suspected small vessel vasculitis. Surgery was no longer recommended and I began taking CellCept, an experimental drug first designed for chemotherapy patients. It was a strong anti-inflammatory and immunosupressant. It was also brutal on the stomach, a challenging drug for someone who was already having a difficult time eating.

I started with a half pill, 250mg and over the next several weeks gradually increased to 1500 mg twice a day. Because you could not eat two hours before and up to an hour after, my eating schedule became very regimented. I suddenly had a greater understanding for my grandmother.
I found that oatmeal helped ease the painful side-affects of some of my medications and those I was to take with food, I took with oatmeal. I found I could tolerate pumpkin cookies made from organic ingredients. Later, friends sent a pumpkin bread recipe that was also delicious. When nearly all food became extremely difficult to eat, these foods, along with SlimFast supplementation kept me going.

SlimFast? Why would someone 5’ 9”, who went from a size 12 to a size 4 drink SlimFast? I did get some strange looks in the grocery store, but the answer was simple. I couldn’t tolerate the taste of Ensure or Boost. I mixed SlimFast into Shetler's milk and could tolerate the taste. I supplemented twice a day.

To counter inflammation and further compromise my immune system, I stayed on higher dosages of prednisone, taking up knitting to combat the side-effects. I tested negative for SPRUE on multiple occasions and was not allergic to the common foods. This didn’t surprise me. It wasn’t that I couldn’t eat flour. I just couldn’t eat highly processed flour and it needed to be organic. I was especially sensitive to any fruit that was not organic, even bananas and watermelon. The more processed the food, the more difficult time I had eating it. I also had trouble with anything acidic. I had become very sensitive to additives and preservatives. As for meats, I could tolerate fish. In the early days, I was often doubled over in pain within minutes of eating. Some foods seemed to pass very quickly. Eating out was nearly impossible. Traveling, extremely difficult. I began to pack my own food wherever I went. It was too difficult to find food on the road. There would come a day when my body couldn't tolerate SlimFast and I was forced to turn to baby food to keep going, much to my daughters' horror. I am happy to say baby food is no longer in my diet.

Tomorrow, the pumpkin recipes...

Bad Things Can Happen to Good People II

At my first visit with the rheumatologist, I learned I had what is known as true Raynaud’s syndrome, identified by abnormal looping blood vessels at the base of my nails. This explained the discoloration and numbness that would appear when my hands and feet were exposed to the cold. My cheeks were pink and the doctor believed I had a faint malar rash. My joints were very loose and I was considered to have hypermobility syndrome. Pin pricks with a needle suggested some loss of sensation in my feet. An EMG was ordered of my legs and more blood work followed.

I tested positive for mixed connective tissue disease. I also tested weakly positive for antiphospholipid syndrome, suggestive of a potential clotting disorder, a possible explanation for the placental abruption in my third pregnancy. I began Plaquenil, which helped with my stiffness. I visited a hematologist to evaluate if an aspirin a day was adequate treatment for the antiphospholipid syndrome and he felt it was. At the same time, he noted a red lacy rash on my legs.

By August, the diagnosis of Lupus was added to mixed connective tissue disease.
My neurologist felt the daily headaches were migraines, though they were always in both temples, occurred daily, began with the other unusual symptoms, and were not nearly as severe as migraines I had experienced in my teenage years and also when I was pregnant with my first child. The loss of color vision was attributed to migraine auras.

By November, I was experiencing loss of feeling in parts of my face that would last up to two hours at a time. When walking across the gym at Mikayla’s school, I suddenly felt as though I had been stabbed with a knife in my abdomen. Appendicitis was ruled out and a series of tests run. Amylase levels were elevated. I had been experiencing early satiation after just a few bites of food since early in the summer, but suddenly, eating was a truly painful experience. The pain in the abdomen would start minutes after I began eating and would last for hours. A colonoscopy suggested potential vasculitis. I had a cardiac ultrasound that suggested possible clots in the heart.

Wednesday, September 23, 2009

Bad Things Can Happen to Good People



I learned this lesson early in life. As a three-sport athlete, in volleyball, basketball and track, I dreamed of competing at the collegiate level. Those dreams were destroyed along with my anterior cruciate ligament when I was clipped in the right knee while shooting a lay-up at basketball camp the summer of my junior year in high school. I worked hard at rehabilitation, but each comeback was marked by another injury. Finally, during the spring of my junior year, I landed in the office of orthopedic pioneer, Dr. Lanny Johnson, faced with the decision of continuing to compete or walking for the rest of my life. I chose walking, along with an ACL reconstruction using graphite fibers to replace my ligament.

Bad things can happen to good people, a life lesson for me. As I struggled to right my world at the age of 17, the president of student council/quarterback of the football team joined me at lunch to tell me how sorry he was. His kind words touched me. Little did I know, a few years later, I would return the favor after he suffered a similar injury, ending his collegiate career. I rebuilt my life, helping coach my senior year. The experience would shape the direction of my college education and my future career as a science teacher and coach.

Our daughters learned the lesson the day our youngest was born. Unfortunately, the lesson kept coming. Olivia’s early struggles with vision and rickets, were not her only challenges. She battled one respiratory infection after another. At eighteen months, we nearly lost her to respiratory syncytial virus, RSV. A child at daycare was identified with RSV and within 24 hours Olivia began coughing in a way we had not heard before. She visited the pediatrician the following morning. I was nursing her in the evening when she stopped breathing. We were a half hour away from going to bed. If it had happened later in the night, we might have missed it. I rushed her outside into the cold air while Chris called the ambulance. The shock of the cold air triggered her breathing and the ambulance arrived within minutes. Her oxygen saturation levels were in the seventies on the ride to the hospital as she struggled to breath. Upon examination in the emergency room, the pediatrician told us it was one of the most serious cases of RSV he had seen and she was admitted immediately. By the end of the week, she lay draped over my lap as we "camped" in an oxygen tent, turning blue whenever her oxygen levels dropped and sweating profusely. She had not said a word in days. When the pulmonologist and head nurse both expressed concerns about the need for a transfer, we listened and pushed for the transfer. They accompanied us in the ambulance to Helen DeVos Children's Hospital in Grand Rapids, though both of their shifts had ended. I was grateful for their care and support. Olivia responded well to the change in treatment and within 24 hours we knew she would make it.

The respiratory infections continued, each ending in an ear infection.

With all we were facing, it was not surprising that I was not feeling well. All of the trips to Detroit and Grand Rapids, along with teaching full-time started to take their toll. My dermatologist, noticed a strange rash on my forehead and ordered a biopsy that came back inconclusive for scleroderma. She asked, “How are you feeling?”

Tired was an understandable answer considering everything we had been through. I had never fully recovered from the bed rest and resulting caesarean. Months of stress, managing Olivia’s care had taken their toll. I was also teaching full-time: three science preps/five classes. I graded papers while I ate lunch at school.

Little things, each easily explained, started to pop up. A co-worker noticed I sometimes had difficulty breathing. My toes began to go numb. I started experiencing daily headaches. My body would get very stiff when I would sit, making it difficult to stand. Some days I would experience severe neck or back pain. I woke each morning with a sore throat. I lost my voice easily.

One of the strangest things happened while teaching. As I looked out in the room, it looked like the back of the room was in a fog, the colors muted. We were in the middle of construction in our building and it wasn’t unusual for a hallway to fill with dust or sometimes smoke. This time I couldn’t smell anything. I asked the kids if they noticed it? Some thought so. I called a custodian in and he quietly told me there was no fog in the room. I called Olivia’s opthamologist in Petoskey and went for a check up. I would later learn a loss of color vision occurs when your retinas do not receive adequate blood flow.

About the same time, I jumped over a small pile of snow in our driveway and was startled by a crack that sounded almost like a gunshot. I was even more surprised when I took a step and my ankle felt mushy in my boot. I had torn ligaments in my ankle, but unlike a typical sprained ankle, I had not twisted it. It happened just from the impact of landing. When I met with the orthopedic surgeon, in addition to the torn ligaments, he identified severe Raynaud’s syndrome in both feet that required medical treatment. I called my dermatologist, who asked if I could come right away.

“Kim, which ankle did you injure?”

It was not uncommon for a foot to stay blue for several days after a sprained ankle, but both were blue. “Kim, which ankle did you injure?”

We went through my list of oddities and a patch on my forehead was rechecked. It was time to order additional blood work. When it came back, my antinuclear antibody test, also known as an ANA, was positive and quite high. An elevated ANA often indicates autoimmune conditions. Something was up, something more serious than just being tired. An appointment was arranged with a rheumatologist as soon as was possible.

Tuesday, September 22, 2009

I am One Tough Cookie in my Wonder Wear


When Olivia began vitamin D supplementation we hoped her growth rate would improve. Before beginning supplementation, she was well below the lowest line on the growth curve, in a fraction of one percent. We hoped for a lengthening in her arms and legs that would improve her overall proportions. We also hoped she could make up some lost ground with her overall length.

As she approached the age of two, though her bones showed visible strengthening and her alkaline phosphatase levels were again within normal range, we faced sobering news. Olivia’s growth was leveling off. Our baby, at twenty-one months was 28 inches tall and weighed 18.5 pounds. We made the decision to begin growth hormone therapy on her second birthday.
There were very few times I cried during those first two years. The day we learned Olivia’s growth rate was slowing brought tears. There was no guarantee growth hormone therapy would work. If Olivia’s body was unable to make growth hormone on its own, supplementation could potentially be successful. If Olivia’s body already made growth hormone on its own, but didn’t know how to process it, the additional growth hormone would make no difference.

Olivia has an amazing spirit. We have often said, “The only thing tiny about Olivia is her size.”

Facing the world at a height of less than three feet is a daunting challenge for a spirit of any size. We prayed for the best.

I was very nervous when we received our training to begin injections. I had handled the contact lens without a problem, though I didn’t wear contacts myself. I had weathered the eye surgeries. This was, somehow, different. Fortunately, Chris had previous experience giving injections and took the lead. He was also very encouraging, insistent I learn, too. The Genotropin pen is designed to minimize discomfort and Olivia would later criticize flu vaccinations for not using a similar needle and technique. Fortunately, I mastered the technique and Olivia, after weeks of blood draws was an amazing patient. She would try hard not to wiggle, knowing it would hurt less if she didn’t and we had to promise not to breath. The same promises still hold true.

She once told me just before her shot, “I am one tough cookie in my wonder wear!”

We laughed and laughed and you know what? She is!

I once heard a physician at St. Jude’s say, “We would never wish a serious illness on a child, but those who survive grow up to be really cool adults.”

Olivia will be a real cool adult. Her sister Mikayla will, too.

Monday, September 21, 2009

The Attributes of an Outstanding Physician II

There were others who were instrumental in changing Olivia’s life for the better. We were told repeatedly, that she would experience catch-up growth by the age of two, but as I changed her diapers, I had a nagging feeling something was wrong. On hearing my concerns one day, my older daughter's pediatrician asked if she could take a look?

I undressed Olivia and she turned to me and said if it were her child, she would take her to a pediatric orthopedic surgeon. Later admitting she was unsure if she was seeing a rare form of dwarfism, she was certain something was very wrong. She arranged for the appointment within a month, just shy of her sixth month birthday. She took the time to listen. Olivia’s life would be forever better because of it.

The ortho ordered an x-ray of her femur. It showed a fine white line along the outside edge of her bone. He repeated the x-rays on a few more bones. All showed the same fine white line. There were also hairline fractures. He sent us immediately to the hospital for a full skeletal set of x-rays. Every x-ray showed the same pattern.

At the end of the day, he turned to us and admitted he did not know what was wrong with Olivia, but asked for time to think about it and to make a few phone calls. I knew we had another excellent physician, greatly appreciating his honesty and candor.

A few days later he called, asking us to take Olivia in for blood work.

“What are you thinking?” I asked.

“I think she has rickets.”

“Rickets!!” I exclaimed.

I remembered rickets from my freshman Biology class as the disease that results from a vitamin D deficiency. I was shocked!

When her blood work returned, her alkaline phosphatase levels were sky high. Dr. Forness’s hunch had been correct. She had a severe case of rickets. We were to discourage any standing and begin vitamin D supplementation immediately. She began weekly bloodwork to monitor her condition.

So, how did an infant in 2003 develop a disease hardly reported in the United States for decades?

As one specialist colorfully put it, “We had a train wreck in the making.”

What conditions led to our train wreck? Olivia, because of the severe intrauterine growth retardation caused by the insufficient placenta, ran a 70% risk of developing a metabolic bone disorder. I had been on bed rest through the summer, depleting my own vitamin D supply. Olivia’s skin is a bit darker because of her father’s Filipino heritage, increasing her risk even more. She had spent little time outside and when we did venture out, her car seat was covered with a blanket so we would not accidentally lose the contact lens. Finally, I was breast-feeding and our pediatrician had not seen the need for vitamin supplementation.

It turns out that breast milk is almost the perfect food. It has everything a baby needs with the exception of vitamin D. Olivia’s pediatrician sincerely apologized for the oversight, another important quality, and we began treating the deficiency with supplementation. Olivia’s alkaline phosphatase levels slowly came back into the normal range. An endocrinologist oversaw her treatment.

Her pediatrician sincerely apologized.

“I should have caught that. I won’t make the mistake in another child,” she promised.

Her sincerity was so very much appreciated, for isn’t that what most of us hope for? That we learn from our mistakes and in the life of a physician, that another child is spared the same mistake? I consider the courage to admit a mistake and correct it whenever possible, the gold standard in medicine. Ironically, if it happened more, I suspect there would be fewer lawsuits and healthier patients. Truly, what patients want more than anything is to get better.

To say her endocrinologist had a significant effect on Olivia’s life would be an understatement of immense proportions. He is an amazing man and an amazing caregiver. In his personal life, he battled diabetes and Parkinson disease with courage and grace and was an inspiration to his young patients and their parents. Though no longer actively seeing patients, I am sure his colleagues continue to value his wisdom for he is highly intelligent, a fantastic problem solver and leaves no stone unturned. He loved Olivia and the feeling was mutual.

He once told me, “We may never understand all of Olivia’s mysteries, but we should never stop trying.”

This final quality would ultimately save our lives.

Sunday, September 20, 2009

The Attributes of an Outstanding Physician


Olivia’s PHPV took us to Children's Hospital of Michigan in Detroit because our eye doctor told us our doctor was the best. I knew we were working with someone special when my phone rang at lunchtime. I was in the Taco House drive-through getting lunch and was surprised to see the doctor’s number. Our first appointment was a few days away. I excused myself and answered the phone. He was on his lunch break, in a similar drive-through and wanted to introduce himself and gather information on Olivia’s case.

When I would later see just how busy this man was, every day, helping kids to see, I would find that initial phone call even more compassionate and amazing. Upon examination, we learned Olivia’s eye condition was more severe than originally thought, along with two attributes of an outstanding physician, honesty and the ability to know your limitations. A outstanding physician has the confidence to ask for help when needed. Olivia's doctor, already one of the best, turned to one of the top retinal surgeons in the world for help.

The retinal surgeon did an amazing job removing Olivia’s stalk of blood vessels, but left the lens intact. We were puzzled because the defect in the lens blocked 80% of her vision when the pupil was dilated. How would she see? Three weeks later, it puzzled her other doctor, too, for the retinal surgeon's reputation was flawless. After examining Olivia, he asked us if we would mind having lunch at the hospital while he arranged for an afternoon appointment with his superior for another opinion. The lens did indeed need to be removed and Olivia was quickly scheduled for a second surgery.

This doctor had the confidence to ask for help while questioning the earlier decision of a highly regarded colleague. When facing a medical crisis, it is critical to remember that even the best can make a mistake. Doctors are human. The patient came before a reputation and Olivia had a better chance of seeing because of it.


Over the coming months and years, Olivia returned for several exams under anesthesia. Each time, a Children’s Hospital nurse would wrap her in a warm blanket when we would arrive early in the morning and Olivia would often fell asleep before anesthesia. I will never forget one exam under anesthesia in particular, the morning her doctor asked for the honors to carry Olivia to anesthesia, asleep in his arms. We are forever grateful for his courage, compassion and integrity and give thanks to both doctors for Olivia's miraculous gift of sight.

Friday, September 18, 2009

When the Alligator Opens II

She was a fighter from the beginning. Just fourteen inches long, Olivia surprised all by perfect Apgar scores. She was a 35-week baby trapped in a 30-week body. An ultrasound showed brain sparing, the body’s amazing ability to preserve its most important part during starvation. Nearly a third of the placenta was dead tissue and scar tissue, causing severe intrauterine growth retardation and shortened limbs, yet miraculously, Olivia’s brain was of normal size. She would spend the following weeks growing under the protective watch of the Neonatal Intensive Care team with the normal ups and downs of the life of a preemie. Her spunkiness served her well.

When she was a month old, a pediatric opthamologist discovered a rare birth defect. Olivia had a condition known as primary hyperplastic persistent vitreous (P.H.P.V.), a rare eye condition found in infants. Olivia's was particularly severe and unlikely related to her prematurity. P.H.P.V. involved a stalk of blood vessels that, during the early formation of the eye, provides a blood supply from the retina to the newly forming lens. In a normal eye, the blood vessels degenerate to the optic nerve and the lens clears. Olivia’s stalk of blood vessels never degenerated. If you looked at the pupil of her right eye, it looked like she had a tiny white daisy in the center. When we took her photo, she had “red eye” in just one eye, her right, every time.

She faced a quick flurry of appointments and surgeries at Children’s Hospital of Michigan and Beaumont. Timing was critical. The earlier the repair, the better the prognosis for vision because the brain must learn to see. The first surgery removed the stalk of blood vessels. Three weeks later, a second surgery removed the lens in the same eye. We were fortunate to have some of the best doctors in the world fighting for some semblance of vision in her eye in a race against the clock.

The night of her first surgery was the longest of my life. She was strapped face down to a board for the first twenty four hours after surgery. She couldn't nurse for comfort. To make matters worse, at one point in the night, there was a fire in the kitchen of the hospital and the fire alarms blared for what seemed like hours. I finally learned the trick of bundling her tiny four pound body, resting my hand on her back for comfort, and the two of us captured a few hours of much needed sleep.

It was also the surgery where I learned firsthand that you must stay close to your child in the hospital. Olivia's I.V. had been placed in backwards and she caught it on the board she was strapped to. A stream of blood pooled below her. My father ran for help and the nurses came running. I shudder to think what might have happened had we not been there, as tiny as she was.

When Olivia received her first contact lens at just shy of three months, she rode in her car seat, flipping her hand over and over, staring at the details of her hand. We knew we had made the right decision, preserving eyesight in her spare eye. It would never equal the other, but at least if something happened to her good eye, she would still be able to see. The doctors referred to it as her spare eye.

After a dozen trips to Detroit, Olivia’s eye was healing and her vision greatly improved by the contact lens. We had much to celebrate. I was understandably exhausted. The stress of the pregnancy had been hard on my body combined with bed rest meant I had underwent a C-section at the physically weakest time in my life. With no time to recover physically, I had moved straight into the rigors of the NICU: long hours, the daily stressors, the physical demands of nursing a preemie, slow healing and excessive bleeding wore me down even more. As the months passed, I was tenuously balancing a teaching career with an infant who required much attention, another who had just started school and one who was in high school. Yes, I was tired, exhausted even, but understandably so and I kept putting one foot in front of the other, moving forward.


When the Alligator Opens



It was 2004. We were just checking in to the Renucci Hospitality House at Helen DeVos Children's Hospital in Grand Rapids, Michigan. Our daughter, Olivia, then two, was there for another round of appointments with her specialists. After a warm welcome and quick hello to the fish in the aquarium, we headed to our room. "When the alligator opens, you go inside!" she instructed.

The elevator opened and in we went, facing the unknown head-on.

"How do you do it?"

I've been asked this question more times than I could count. No one asks for a situation like ours. You just take it one step at a time, one day at a time. Always making the best of the situation at hand.

Olivia had faced the alligator since birth, actually before birth. A partial abruption of my placenta left her literally starving in utero, the placenta crippled in its ability to provide desperately needed nutrients to her growing body. She was my third child. Her siblings, both preemies, brought warnings of her eminent premature birth. Despite bed rest, I experienced frequent contractions and remained small, warning bells of an impending problem. Yet the complication amazingly went undiagnosed until days before her birth, by Caesarean section, during her thirty-fourth week. She weighed just 2 pounds 9 ounces. A true miracle at the beginning of her journey and ours.