TOUCHED BY LYME: Massachusetts activist slams back at Lyme disease

9th August 2012

trish mccleary

Lyme activist Trish McCleary tells how and why she founded "S-L-A-M."

 

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.)

 

 

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Comments

15 thoughts on “TOUCHED BY LYME: Massachusetts activist slams back at Lyme disease

  1. Your story and the thousands of others need to be heard. I’m so glad you are heading up this group and being a voice. You GO GIRL !!!!!!

  2. Sorry to hear of your illness yet so glad you are reaching out to others. My daughter has been going from doctor to doctor for the past year with fatigue and extreme pain throughout her body. She too finally found a lyme literate dr. We too are speaking out to help others.

  3. Thank you for all your dedication and hard work. I know it is a struggle for you while you are fighting Lyme. My daughter is also a victim of chronic late stage Lyme misdiagnosed leaving her in a helpless condition much like yourself. She too has a little boy born with Lyme who also complains about his bendy parts hurting – he is 7yrs old with damaged joints from the illness. Our state has only three LLMD’s as so many have been forced out of business due to use of extended antibiotic treatment. As a Lyme patient caregiver I understand the suffering not only physically but emotionally and financially. My daughter’s situation has also caused stress in the marriage which does not help her condition any. There are times things look pretty hopeless. I pray for the day everyone is truly aware of this debilitating illness and takes it seriously. They need to realize that Lyme Disease is not only transmitted by an infected tick. It spreads much the same as syphilis, which is cousin to Lyme. God bless you for your good work.

  4. Thank you for being so brave about what has happened to you with the journey of Lyme Disease. I too woke up one morning in June of 1997 and I was in such pain I couldn’t believe it was real I hurt so much..I spent the next 10 years with out a diagnoses and struggled everyday to raise my daughter and try to save our home. I was a single Mom working at home and Home Schooling my child at the time this all hit. It’s still a struggle after years of treatment. I have had Lyme for over 25 years we guess, and no one paid any attention to my pleas either. It’s very heart breaking when this happens in any disease. Let’s find a way to be stronger and help put this disease in the hands of real doctors that can work to help us be well.

    • How could I not also say that my daughter was born with Lyme due to me not having a diagnoses back in the day when my husband took me to every hospital in the area. No one would even look at me seriously anyway. That was in 1986 and in 1997 I had the major Lyme onset that took everything from me and my child. I lost my home my job and my sense of being due to Lyme and the doctors who say it doesn’t exist. Well here is the evidence right here in these and all the words here said. Thank you for your work and the work that so many of us do without pay and recognition. WE are the soldiers of this war, the war on Lyme.

  5. Thank You for continuing to help others who have been affected by tickborne pathogens. Too often, people get better and move on with their lives. I am thankful that you and others continue to educate the unsuspecting public about the severity of these myriad pathogens and I am saddened that you had to live through this horrific experience with callous medical personnel who so easily turned their back on you.

  6. It has been proven over and over, late-disseminated Lyme bacterial encephalitis, carditis, hepatitis, myelitis, arthritis (and all the other bugs not tested for from ticks) do not clear w/ (10-30) days oral amoxicillin treatment which further if your lucky even to get that, it’s ususally prescribed at dose below recommended by (CDC).
    The (CDC) reports late-disseminated neurological Lyme disease (borrelia are known to pass the blood brain barrier within 72 hours) which then requires aggressive (30) days (IV) cefriaxone treatment to cross the blood brain barrier and cerebral spinal fluid.
    Why does (IDSA) ignore “warranted” prompt and proper (CDC) (IV) ceftriaxone antibiotic treatment for late-disseminated Lyme disease and most-likely other common co-infections for prevention of serious neurological and long-term health consequences?
    This ignorance causes serious long-term disabilities. even death.

  7. Wow! Your responses are amazing I couldn’t imagine my story would reach so many. I wish you well and I hope to be able to continue the work I now do for all of us.

    Together we can make a difference!

  8. What an amazing story & thank you so much for sharing your heart & story! I have one thing to share however, that hopefully will speak to people here. Long term antibiotic use is NOT the answer. I’m speaking from personal experience as I also have lyme, so does one of my children and several friends of mine. We’ve all done the long term antibiotics, and while they offered some immediate relief – the side effects of the antibiotics are horrible. Antibiotics make the disease hide only to return at a later date smarter & even more powerful! My LLMD couldn’t recommend it, but I purchased a Rife Machine (Frequency Generator). It has changed all of our lives dramatically! No more antibiotics!!! I’ve been free of them for over a year, and the GB-4000 I purchased has been a godsend. My life and energy are back! Everyone who has used my machine has seen great results (without any antibiotics!) Please people… research it… look into it yourself! Bryan Rosner has written an amazing book about lyme/rife machines. It will change your life!!! Be informed! Be proactive! Have faith! And don’t give up! Blessings to one and all!!!

    • this is the most typical Lyme rash I have seen yet. Tested her, but went ahead and treetad her with oral antibiotics immediately did not want to wait until tests were back, 2 weeks later done with antibiotics tests came back positive for Lyme Now what are the chances of my grandaughter here in Indiana getting bit and myself in Conneticut l983 also getting bit if this disease is not prevelent??? Dilch I am telling you this disease is thick and it is getting ignored.All it takes is for the fda or the cdc to say lets treat it now and not wait until meningitis, bells palsey or wheelchair is the next level for individuals. I do not like antibiotics and will do anything to keep from taking them because of the thrush and candiadias they cause plus I have reactions to them, but believe me, I have already pulled off three ticks this spring from working in the yard and trimming trees and leaf raking, if I get down sick again, I will go to the ends of the earth to get help before I end up like I was at my lowest part of Lyme. I realize this is a long letter I am sorry but want to get point across that people need to recognize this disorder when they first get it, I think if I were let go again and the doctor would deny me treatment a lawsuit would be in the works. These doctors are sworn to help those out there who are hurting , not diagnose them as nuts. Remember Al Capone,? He died of syphlis another spirochetal disease just like Lyme and he went crazy and blind before he died. How many out there will have to die from the Lyme before we get a decent test and the cdc agrees to let up on the guidlines so someone can be treetad early rather than late when the damage is already done. Thank you if you print this probably long and boring note.. cjl

  9. The US medical system is, to an outsider, appalling. Not just the intolerable (lack of) treatment of Lyme but more generally. Why so many fight Obama’s health bill is a mystery to most of the world… truly amazing.

    Very sorry about your experience, mine is lesser but similar. It’s a hard road and a tragedy that so many lose so much so unnecessarily. Some decision makers should be held to account.

  10. Does anyone have any thoughts on why this IDSA, CDC, insurance company, medical groups etc.. haven’t been hit with a class action lawsuit? What am I missing given all the well documented harm that has systematically been done?

  11. Thank you so much for telling your story and becoming an advocate of Lyme awareness. I have been teking care of my daughter who has had lyme for the past 6 years. Similar story to you in the mainstream medical community. Not many believe you out there. I want to encourage caretakers to listen, believe, and get help for your loved ones. It is almost a fulltime job to keep up with the care: healthy organic food, herbs, meds, doctor visits, encouragement and a FIRM belief that they will be well again.

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