Just One Pill: A Story of Lyme Disease

By Deb Mowbray

I remember in the 90’s how the movie, Awakenings, affected me. A poor man, trapped in a neurological coma-like prison took one simple pill and experienced a miraculous breakthrough awakening. Unfortunately the effects couldn’t be sustained by repeating the dose. How horrible that he was free and then reverted back to his mental prison. What could have caused this? Why aren’t they giving him more? This cannot be a true story! It was just too horrific to contemplate so I shut it out.

But it was true. And now I know how he felt. I am all too familiar with what may have caused it and how it feels to be shut out.

At three and a half years of age, my normal, thriving, tow-headed boy developed uncontrollable seizures. There had been no trauma, infection, fever or recent vaccine. Subsequently, every anti -seizure medicine and combinations thereof were tried to no avail. He was even placed in a drug induced coma and endured experimental brain surgery only to awaken both times to a cacophony of seizures – all courtesy of cutting edge medical institutions.

At the same time, his thirteen year old sister was experiencing typical Lyme symptoms of swollen knees, joint complaints and rashes which rapidly progressed to neurological complications. Regardless of the symptoms they both tested negative using standard tests for Lyme disease. Eventually my daughter was diagnosed with rheumatoid arthritis and my son with refractory epilepsy; they were sent home with a wheel chair and a helmet.

A local physician, considering my daughter’s dire diagnosis and classic presentation, felt we had nothing to lose but to try IV Lyme treatment. Her response was nothing short of miraculous. She went from being bed ridden to winning equestrian competitions and excelling in school again.

While my son’s situation proved more complex, his response was equally miraculous. After an initial worsening of symptoms- tagged the Herxheimer (reaction which indicates the killing of a spirochetal infection) he improved and became seizure free for extended periods without added anti-seizure medication.

But after a year reprieve seizures and other neurological symptoms resurfaced. Treatment resumed. The sweats at night were a welcome sign that he was experiencing a Herxheimer and responding to the antibiotics. He awoke feeling better, hitting golf balls clear into our neighbor’s yard and nailing all of his long division problems. At this point I was convinced that his resurgence of seizures was attributable to Lyme. My daughter has also experienced episodes of debilitating flare ups that have been alleviated by additional treatment.

Through the years I have witnessed similar improvement among countless other patients who’ve received Lyme treatment after being misdiagnosed with other debilitating conditions. Many of their stories can be seen on the website of renowned pediatric Lyme doctor Charles Ray Jones, M.D. at www.drjoneskids.org. The very compelling and eye opening movie, Under Our Skin, can also be viewed on his website, and I would encourage everyone to do so. Because whether you believe in chronic Lyme disease or not, it is a fact that we live in a Lyme endemic area.

Now after a near two-year break, my son is experiencing seizures again. We had to fly him to the hospital for an IV dose of anti-seizure medication, which he continued to seize right through. After the IV, the neurologist agreed to let me take him home noting his history and the fact that he was out of status epilepticus; he wasn’t in imminent danger, and there was nothing, short of another brain surgery, that hadn’t been tried. He sent me armed with an emergency plan and directions to slowly increase anti-seizure medications- even though triple doses of the same meds did nothing in the past.

Perhaps we had lowered his Lyme treatment too soon. Or the infection had become immune to the current protocol. More concerning is the possibility that damaged tissue is aggravating the brain and causing seizures. Only time will tell, as once again, I am working with my Lyme doctor in conjunction with the neurologists to try to find a treatment that he will respond to.

I wrote a book several years ago about our plight. It was my therapy and my gift. A promise to my children to never give up. A promise to my contemporaries’ children to never be silent. A promise to myself to hang in there. And most importantly- A promise to God to keep the faith. Given our experience, the diagnosis- and ultimate treatment plan- was not a hard decision to make. In the end trying a pill wasn’t hard. The fact that it has worked three times now is a Godsend. I can only hope and pray that it works again. And know that I will never give up the search for the answer- or the pill that makes the difference.