As a survivor and now advocate of Chronic Lyme disease I hope my story will play some roll in bringing change so desperately needed for research and better testing of Lyme disease. Change is needed to educate our Medical Community so others won’t suffer as I have and families across the world are suffering.

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. My Mother was diagnosed with Lupus among other illnesses but doctors didn’t believe this was my issue. I was living my life in constant pain, fatigue and illness and was told “you’ve got two smal children, you’re supposed to be tired!”

Eventually I was tested and diagnosed with Fibromyalgia. This is not so much a disease as a category of symptoms for which nobody knows the cause. Doctor’s seemed content with the diagnosis and I had to trust in their knowledge. I learned to live becoming more crippled by pain and having no 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 waken 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 was all my disease needed to take complete hold and my life would never be the same.

Eventually 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 pain. Things could be worse or so I thought.

In June of 2006, I woke to get my kids off to school and 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 that I would go back to bed when they left for school. I couldn’t imagine after a short nap waking 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. I was unable to lift my arms or move any part of my body. My mind racing but clear I couldn’t understand what was happening. Before I knew it an ambulance had arrived. They were 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! The Paramedic quickly realized I could understand him and was alert. We began communicating by blinking once for Yes and twice for No. I could feel nothing and say nothing.
Taken to my local Emergency Room I was quickly assessed and 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 laid 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 husbands 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.

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 had no way of being expressed or heard.

Hours passed with no answers and a 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 arrived in Boston by ambulance. I was met by a nurse from down the hall yelling “look at that left facial droop” and I thought to myself, 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 husbands arrival he told my story and scanning began only to reveal I did not have a stroke. This being the case they would not admit me but they did call the Psych Department for what now must be a psychological disorder. Exam didn’t take long and before I knew it my husband was arguing side by side 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 5 days my husband lifted me into the car and drove me the hour to Boston to every hospital we could think of. All taking one look at me, moving quickly but then confusion on their faces 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. How damaged is our healthcare in this country when they can send someone away in this condition? Even Nurses that were sent to our home for my “non existent” 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 4 ½ months I lingered in this condition with my ride side eventually regaining some movement and words coming out in whatever order they wanted. We decided to visit a Therapist out of desperation. Was I crazy? Is this psychological? Upon arrival the Therapist was shocked at my condition and 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.

A 2 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 exactly what was wrong with me and what to do about it. I was assured he could help 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 exactly what blood tests and scans to order. How did all the other hospitals and doctors not have a clue?

We quickly learned this was not a politically correct disease to have as health insurance didn’t’ even cover my appointments and would probably not cover the treatment which we were told would be a long and costly process. Treatment did start right away with a clinical diagnosis first. Almost immediately my speech came back and with physical therapy I regained use of my left side. I continued to improve but plateau over the next two years of oral medications.
Hospital visits were frequent to help me through the affects of the Herxheimer reactions during treatment and our finances were drying up and treatment eventually stopped. It wasn’t long before I was again very ill. Bedridden, weak and without treatment covered by insurance we began to prepare for the reality of my death.

It was December 2009 when I learned of a LLMD (Lyme Literate MD) in Massachusetts accepting new patients and insurance. 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 in my having a healthy future. Her knowledge of the disease seemed endless and we knew our prayers were answered.
IV antibiotics, probiotics and an herbal protocol was the plan for my treatment and by Christmas Eve I was able to go downstairs, unassisted, to enjoy my family for the first time in over 2 years. I felt life coming back and knew I could and would fight for my life.

By May of that year my life saver LLMD had been harassed out of business for treating Lyme Disease past the 30 day suggested treatment guidelines set forth by the IDSA (Infectious Disease Society of America), a common practice in the medical/insurance community for those choosing to treat Lyme disease. A practice that leaves patients without a specialist and without care. I’ve learned the IDSA has chosen not to change their treatment guidelines even after scientific evidence has been offered to prove change is needed.

My PICC line in place was pulled and meds abruptly stopped. Hundreds of patients were suddenly 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. Over the next couple of months my health began to improve and I found myself in remission for the first time in years. The infusions of antibiotics everyday had worked! My story was put in a local paper in April of 2009 and the days following were filled with phone calls to my home of people asking for help. Recognizing themselves in my story families contacted me and I knew I had information that could help them. I chose to be a part of changing the way Lyme disease is treated. I started a Lyme Disease Awareness and Support group called S.L.A.M. (Sturbridge Lyme Awareness of Massachusetts) S-L-A-M.org . We work with larger organizations to raise awareness of Chronic Lyme disease and on legislation to improve testing, treatment and research of Lyme disease. 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. “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 MA adorn “Ribbons” in an effort to raise awareness of Chronic Lyme and Tick Borne Illnesses. We’ve supported legislation which now allows LLMD’s in Massachusetts to treat for as long as they need without fear of being harassed. We continue to educate our communities and legislators and have managed to introduce the ‘Time for Lyme’ curriculum into the Tantasqua School system in Sturbridge, MA. It is our hope all schools in MA will adopt the inexpensive curriculum and become Lyme Literate.

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 be undiagnosed or misdiagnosed and this epidemic will grow. My entire family has now been infected with Lyme disease and 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 Tick Borne Illness.

Together we can make a difference!

Trish McCleary
Chronic Lyme Survivor