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


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


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.