MY LYME – MY VOICE
By Trish McCleary
As a survivor and now advocate for Lyme disease I hope my story will play some role in bringing change desperately needed for research and better testing of Lyme disease, as well as, mandated insurance for treatment coverage. Change is needed to educate our medical community so others won’t suffer as my family has.
As a teen, I began suffering from chronic muscle and joint pains with doctors telling me I had some form of arthritis. Into my 20’s I was sick with whatever went around and constantly on antibiotics to get well. It was clear my immune system was not what it needed to be, but doctors ignored my concerns. I was living my life in constant pain, fatigue, and illness and was told: “You’ve got two small children; you’re supposed to be tired all the time!”
Eventually, I was tested and classified as having Fibromyalgia. This classification is not so much a disease as a category of symptoms for which nobody knows the cause. Doctors seemed content with the diagnosis, and I had to trust in their knowledge. I learned to live with it, but was becoming more crippled by pain without relief. My body struggled daily, but my mind was determined to be an active and involved mother of my two boys and wife to my husband. I constantly wondered what my future would be living in so much physical pain.
After a horseback riding accident in 1996, my body seemed to erupt and awakened a beast that was within. I believe this event saved my life because I was forced to seek answers for a body that was no longer functioning properly. The stress and injury from the accident were all my diseases needed to take complete hold, and my life would never be the same.
Years later, I was diagnosed with Hypothyroidism and for a time I thought this was my answer. Weight gain I couldn’t understand melted away, and I felt less fatigued but still in terrible pain. Things could be worse, or so I thought.
In June of 2006 I woke to get my kids off to school. I was aware my head felt foggy and not right. My oldest son, then 15, asked “Mom you don’t look good. Are you ok?” I assured him I was fine, and I would go back to bed when they left for school. I couldn’t imagine after a short nap I would wake in a mind-numbing state and my body in a full panic I could barely control. I managed to get a call off to my husband at work desperately seeking help. Something was very wrong! I hung up the phone and sat down and tried to calm myself. Within minutes, the phone rang, and I realized I was unable to answer it, unable to lift my arms to pick it up. My mind racing but clear I couldn’t understand what was happening. Before I knew it, an ambulance had arrived. Called by my husband when I didn’t answer the phone. I remember the EMT’s asking me questions and when I went to answer I couldn’t speak! They lifted me onto the gurney, and my body was limp. The Paramedic quickly realized I could understand him and alert despite my inability to move. We began communicating by blinking once for Yes and twice for No. I could feel nothing and say nothing.
I was taken to my local Emergency Room and quickly assessed. To my amazement, the doctor on duty told all of the nurses to leave me alone. “When she’s ready to talk, she’ll talk” and away they went. I lay there alone doing my best not to panic. The words in my head were clear my thoughts were racing. Did I have a stroke? Why won’t they help me? I don’t know how much time passed before I heard my husband’s voice. This is when the medical staff came into my room and acted as if they’d been helping me all along. I had no way of telling him anything. Given a drug to counteract the effects of drugs in case I had overdosed at the doctor’s insistence but there was no change.
Testing finally began, and I knew something was very wrong when I didn’t feel the needles or catheter going in. I began to understand this was my time to leave this earth, and the thoughts of leaving my children and life were overwhelming, but I had no way of being expressed or heard. Calm came over me, and I was at peace for that moment.
The CT Scan showed no brain bleed and with no answers and with the seemingly unconcerned staff, my husband insisted I be transferred to a larger hospital in Boston. Our request was granted but with no rush. It was evening when I finally arrived in Boston by ambulance.
Met by a nurse from down the hall yelling, “look at that left facial droop” and I thought to myself, the poor bastard who are they talking about? It was me! The left side of my face had drooped, and doctors reacted with a stroke protocol where everything moved very fast, and it became clear to these docs I couldn’t speak or move. They were confused as my records from the first hospital said that I arrived complaining of a sore throat! Unbelievable! Upon my husband’s arrival, he told my story and scanning began only to reveal I did not have a stroke, no brain bleed was seen. This being the case they would not admit me, but they did call the Psych Department for what now must be a psychological disorder. The exam didn’t take long, and before I knew it my husband was arguing side by side with psych doctors saying “this is not a psychological issue you must admit her and figure this out!” Their pleas fell on deaf ears, and I was sent home in the condition I arrived. “Do you need help getting her in the car?” asked the staff.
For the next five days, my husband drove me to Boston to every hospital we knew, all taking one look at me, moving quickly but then confusion on their faces when it was determined I hadn’t had a stroke, and I was sent away. It was unbelievable this could be happening! My children, shocked to see me home, asking why nobody would help their mom and my husband struggling to answer with anything that could make sense while I was still unable to communicate or walk.
How damaged is healthcare in this state when they can send someone away in this condition? Even Nurses sent to our home for my “Psychiatric” condition would not touch me because they were told one thing only, to arrive and see the ‘condition’ I was in. Nothing close to what they expected to see.
For four and a half months, I lingered in this condition with my right side eventually regaining some movement as well as my ability to speak but no ability to put a sentence together or get out of bed on my own. We decided to visit a Therapist out of desperation. Was I crazy? Is this psychological? Upon arrival, the Therapist was shocked at my condition. After some questioning suggested I may have Lyme disease. What? How can that be? Lyme surely doesn’t do this to a person! Our therapist immediately made a phone call to a Lyme Literate MD (LLMD) in Connecticut and secured me an appointment immediately.
A two-hour drive led us to the doors of a Lyme specialist who helps patients from all over the world. His concern for me was genuine and for the first time, he seemed to know what was wrong, and what to do about it. Reassured he could help, held some relief, but it would be a long process, and we were urged to learn all we could about Lyme. He sent me immediately to a Lyme Literate Neurologist, who would discover, with the help of SPECT Scans, the multiple lesions on my brain caused by Lyme disease. These doctors seemed to know the appropriate blood tests and scans to order. How did all the other hospitals and doctors not have a clue?
We quickly learned the controversy surrounding this disease and that health insurance didn’t even cover my appointments. They would probably not cover the treatment – which would be a lengthy and costly process. Treatment started right away with a clinical diagnosis and oral antibiotics. Almost immediately my speech came back and with physical therapy I regained use of my left side. I continued to improve but plateaued over the next two years of oral medications.
Hospital visits were frequent during this time though with left sided weakness and facial droop returning five or six times during treatment. Hospitals did not believe Lyme disease could this to a person. During treatment, our finances were drying up, and treatment eventually stopped. It wasn’t long before I was again very ill. Bedridden, weak, and no insurance coverage for treatment we began to prepare for the reality of my death. I did my best to tell my husband about the little quirks and needs my sons would require from him. I did my best not to lose all hope.
It was December 2009 when I learned of a new LLMD in Massachusetts accepting new patients and insurance. I had nothing to lose; a quick explanation of my symptoms got me an appointment quickly. On my first visit, multiple blood tests were performed, and this doctor seemed very optimistic about my having a healthy future if I agreed to treatment. Her knowledge of the disease seemed endless, and we were hopeful our prayers were answered.
IV antibiotics, probiotics and an herbal protocol to help boost my immune system and detox from all of the die-off caused by medications, was the plan for my treatment and by Christmas Eve, I was able to go downstairs, without assistance and enjoy my family for the first time in a long time. I felt life coming back and knew I could and would fight for my life.
By May of that year, my lifesaver (LLMD) had been harassed for treating Lyme disease past the 30-day suggested treatment guidelines set forth by the Infectious Disease Society of America (IDSA) and I was again without a physician and a way to get the meds I needed. This is common practice in the medical community for those choosing to treat Lyme disease. The IDSA has chosen not to change their treatment guidelines even after scientific evidence has been offered to prove change is needed and anti-trust violations filed against them.
My PICC line was pulled, and meds abruptly stopped as I was told there would be no more medicine for me. Hundreds of patients were left without their Lyme doctor and nowhere to turn. The abrupt halt in medication was a miserable experience, and I’m just happy to have lived through it. My left face again drooping and left sided weakness again presented itself. We had no place to go and no funds to go out of state for help.
I existed day-to-day allowing only positive thoughts in my mind and prayers and continuing herbals prescribed. 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. My story was placed in a local paper in April of 2009, and the days following filled with phone calls to my home from people asking for help. Recognizing themselves in my story, I knew I had information that could help them. I knew when I got out of my bed after two and a half years I had to do something. I chose to be a part of the change in the way Lyme patients were not only treated but to do all I could to raise awareness as long as my body would hold up.
My husband and I founded a Lyme Disease Awareness and Support group called S.L.A.M. (Sturbridge Lyme Awareness of Massachusetts) S-L-A-M.org. I am now an advocate for better testing, treatment and research of Tick-borne illnesses. Bringing awareness by making resources available to those suffering. We started a campaign called “Ribbons across America” which has become well known in the Lyme Community, across the country, and around the world. “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.
We’ve supported legislation, which now allows LLMD’s in Massachusetts to treat for as long as they need without fear of being harassed. Massachusetts Governor, Deval Patrick, invited me to serve on the MA Lyme Commission, and I proudly served as a voice for the Lyme community. I have since Co-founded MA Lyme Coalition working directly with legislators on a bill to mandate insurance coverage for Lyme treatment (MA S.502.) I now serve as a member of the Patient and Family Advisory Committee (PFAC) of my local hospital where I hope to bring much-needed physician education for Lyme and other tick-borne diseases.
We continue to educate our communities and legislators and have managed to introduce the ‘TimeforLyme’ curriculum (now the Lyme Research Alliance) into our local school system. It is our hope that all schools will adopt the inexpensive curriculum and become Lyme Literate communities.
Citations from both the Senate and House of Representatives adorn my desk in my home office and several Proclamations declaring the month of May “Lyme Disease Awareness Month” from our Governor sits just beside them. In 2015, I received an MAUnsung Heroine Award and citations from Governor Baker, MA Senate and MA House of Representatives, a genuine honor!
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 infected with Lyme disease and has undergone numerous treatments. Signs that my sons were indeed born with this disease are everywhere, and some of their unanswered medical issues now make sense.
Indeed, the majorities of people who find their way to my support group have been misdiagnosed or are symptomatic and cannot afford reliable testing and treatment.
I will continue to do whatever I can to fight for more research, better testing and treatment that is covered by insurance for those suffering from Tick-borne illnesses, as the thought of my sons suffering as I did is unthinkable.
Together we can make a difference!
Mother, Wife, Chronic Lyme Survivor, Advocate
Twitter: @SLAMLyme and @LymeCoalition