TOUCHED BY LYME: Massachusetts activist slams back at Lyme disease

 

by Trish McCleary

I woke up one morning in June of 2006 and my head felt foggy. My son said, “Mom, you don’t look so good.” I assured everyone I was fine, got the kids off to school and then took a short nap. I awoke with my mind in a numbing state and my body in full panic. Something was very wrong.

I managed to get a call off to my husband at work, desperately seeking help. I hung up the phone and tried to calm myself. Within minutes, the phone rang and I couldn’t lift my arms to pick it up. What was happening?

Then an ambulance arrived, called by my husband when I didn’t answer the phone. I was unable to move or to answer the EMT’s questions. When the paramedic realized I could understand him, we communicated by having me blink once for yes and twice for no. I could feel nothing and say nothing.

After a quick assessment at my local emergency room, the doctor on duty told the nurses to leave me alone. “When she’s ready to talk, she’ll talk.” I lay there alone, trying not to panic. The words in my head were clear. Did I have a stroke? Why won’t they help me? When I finally heard my husband’s voice, the medical staff acted as if they’d been helping me all along. I had no way of telling him anything.

Testing finally began and I knew something was strange when I didn’t feel the needles or catheter going in. I began to feel it must be my time to leave this earth. Thoughts of leaving my children and life were overwhelming but I had no way to express it or be heard.

My husband insisted I be transferred to a larger hospital in Boston. At the second hospital, I was met by a nurse yelling, “Look at that left facial droop!” I remember thinking: poor bastard. Who are they talking about? Turns out it was me! The left side of my face had drooped and doctors responded with a stroke protocol.

When a scan revealed I did not have a stroke, they did not admit me to the hospital.  Instead, they called the Psych Department for what they figured must be a psychological disorder. Before long, my husband was arguing with psych doctors saying, “This is not psychological. You must admit her and figure this out!” Our pleas fell on deaf ears and I was sent home in the condition I arrived.

For the next five days my husband drove me to every Boston hospital we knew of. They all looked at me, didn’t know what to make of things, and sent me away. My shocked children kept asking why nobody would help their mom.

For more than four months I lingered in this condition. Eventually, my right side regained some movement. I recovered some ability to speak but couldn’t put a sentence together. We visited a therapist out of desperation. Was I crazy? Was this psychological?

The therapist, stunned at my condition, suggested I might have Lyme disease. What? How can that be? Lyme surely doesn’t do this to a person! The therapist made me an appointment with a Lyme-literate MD (LLMD) in Connecticut.

A two-hour drive brought us to a Lyme specialist who helps patients from all over the world. His concern for me was genuine and he seemed to know exactly what was wrong with me and what to do about it. He assured me he could help but said it would be a long process. He urged us to learn all we could about Lyme. He sent me to a Lyme-literate neurologist who discovered, with SPECT scans, multiple lesions on my brain caused by Lyme disease. These doctors seemed to know exactly what blood tests and scans to order. How did all the other hospitals and doctors not have a clue?

We learned the controversies surrounding this disease and that health insurance would probably not cover the long and costly treatment. The doctor started me on oral antibiotics. Almost immediately, my speech came back. With physical therapy I regained use of my left side.

Eventually, our finances dried up and I had to stop treatment. It wasn’t long before I was again very ill. Bedridden, weak and without treatment covered by insurance, I began to prepare for the reality of my death.

In December 2009, I learned of a new LLMD in Massachusetts accepting new patients and insurance. Having nothing to lose, I made an appointment. This new doctor seemed optimistic about my healthy future. Her knowledge of the disease seemed endless and we felt our prayers had been answered.

With IV antibiotics, probiotics and an herbal protocol, I felt my life coming back. By Christmas Eve, I could go downstairs without assistance and enjoy my family for the first time in a long time. I knew I could and would fight for my life.

By the following May, my life saver (LLMD) had been harassed out of business for treating Lyme disease beyond the 30-day treatment guidelines set forth by the Infectious Disease Society of America (IDSA.) This is a common occurrence for doctors who treat Lyme disease. It leaves patients without a specialist and without care.

The PICC line was pulled from my arm and meds abruptly stopped. Hundreds of other patients and I were left without our Lyme doctor and nowhere to turn. The abrupt halt in medication was a miserable experience. My face drooped again as left-sided weakness presented itself once more.

I existed day to day, allowing only positive thoughts in my mind and prayers. Over the next couple of months my health began to improve and I found myself in a sort of remission for the first time in years. Since then, I have worked with an LLMD in Connecticut who helps keep me going.

My story was put in a local paper and the days following were filled with phone calls to my home from people who recognized themselves in my story.  I knew I had information that could help them. I knew when I got out of this bed after 2 ½ years I had to do something.

I started a Lyme disease awareness and support group called S.L.A.M. (Sturbridge Lyme Awareness of Massachusetts, S-L-A-M.org.) I now advocate for better testing, treatment and research of tick-borne illnesses. Bringing awareness and making resources available to those suffering is our mission.

I started a campaign called “Ribbons across America” which has become well known in the Lyme community and across the country. “Ribbons” asks homes and business to hang lime green ribbons for all to see for the month of May which is Lyme Disease Awareness Month. Many town commons in Massachusetts have participated.

We’ve supported state legislation which now allows LLMDs to treat for as long as they need without fear of being harassed. We continue to educate our communities and legislators and have introduced the ‘Time for Lyme’ curriculum (now the Lyme Research Alliance) into our local school system.

Massachusetts Governor Deval Patrick has asked me to serve on the newly formed Massachusetts Lyme Commission. Citations from both the Senate and House of Representatives adorn my desk in my home office and a Proclamation declaring the month of May “Lyme Disease Awareness Month” from our Governor sits beside them.

For me the struggle with chronic Lyme and the damage to my body is ongoing as it is for most chronic Lyme sufferers. Until better testing becomes available, early stages of Lyme will continue to go undiagnosed or misdiagnosed and this epidemic will grow. My entire family has now been diagnosed with Lyme disease and have undergone numerous treatments. Signs that my sons were indeed born with this disease are everywhere and unanswered medical issues now make sense.

I am proud to serve as a voice for the hundreds of families who have asked for my help. I will continue to fight for more research, better testing and treatment that is covered by insurance for those suffering tick-borne illness. The thought of my sons suffering as I did is unthinkable.

Click here for the website of Sturbridge Lyme Awareness of Massachusetts (S.L.A.M.)