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Lyme Disease, Pit Bulls, and Life

Struggles, hope, and Chronic Lyme Disease.

Adversity is something we all face at some point in our lives, to different degrees and at different times.  I am no stranger to this fact, and rather than shy away from the challenges and curveballs life has thrown in my direction, I am doing my best to share my story and advocate in the hopes that I will make a difference or touch at least one person. 

My story begins when I was ten years old, nearly fifteen years ago in Pennsylvania while attending summer camp.  I had a blast that summer out on the lake, in the woods, riding horses, doing anything and everything outdoors you could possibly think of.  I had always been careful and aware of ticks, I knew they carried potentially dangerous diseases, but I did not know the repercussions and life altering events that would follow that care free summer in the sun. 

I never found the tick that bit me, but when I returned home to California after summer camp, I had the tell-tale signs that I had been bit.  I became acutely sick with flu-like symptoms, had an extremely painful and swollen knee, and the hallmark erythema migrans (EM) or “bulls eye” rash.  After a stint in the hospital and being misdiagnosed with a staphylococcus (staph) infection, I was continuously ill.  I was treated with antibiotics for the staph infection while in the hospital, but I never made a full recovery.  I had recurring joint pain that migrated throughout my body along with joint swelling and redness.  Six months after the initial onset of symptoms, I had an answer: Lyme Disease. I was told that Lyme Disease was an easily treatable bacterial infection.  Little did I know what these bacteria would eventually do to my body, my relationships…my life.  I was prescribed four to six weeks of doxycycline and was supposedly “cured”, but I never felt the same.  Over the course of my childhood I experienced constant migratory arthritic symptoms and myalgia.  I also had digestive issues, but I just thought I had a sensitive gastrointestinal system.  I saw many doctors, including general practitioners, orthopedists, chiropractors, physical therapists, etc. and never found any answers.  Although the pain was uncomfortable, I remained mostly functional.  I did have to give up soccer, skiing, and snowboarding and it affected my ability to ride and show my horses, but I was able to continue forward in life.  I learned how to compartmentalize my pain and my ability to tolerate it increased.  I lived in constant pain without knowing or understanding why for twelve years.  In January 2010, my life changed forever.

I studied animal science in college, and was heavily involved in breeding cattle and horses.  I do not know if I became re-infected, or if my body just gave up after being sick for so many years, but in January 2010 I became acutely and intensely ill, and things have been going downhill ever since.  My joint and muscle pain intensified drastically, I began to struggle with major memory loss, had trouble focusing, began to get lost in the same town I had lived in for nearly five years, started experiencing numbness and tingling throughout my body, and started to have severe gastrointestinal issues to the point that I could not eat or drink anything without becoming violently ill. 

Once again, the quest for answers began, and this time I had a science based education in my arsenal, and I started researching chronic and persistent forms of Lyme Disease.  What I found has been reflected in the struggles and hardships I have had in receiving treatment and care: the medical community is in a boxing match over whether or not this actually exists.  Well, ask myself and thousands of other patients who suffer from this disease and other tick born diseases (which I will discuss shortly): it does.  Contrary to what many doctors have told me, the symptoms are NOT in my head, I am NOT crazy, and I am NOT trying to attract attention. 

While I began seeking answers and trying to find a doctor who not only believed that I was seriously sick but who would treat me, I moved to Mississippi to attend graduate school.  I was supposed to study applied beef and dairy cattle reproductive physiology and embryology, what I had worked so hard to achieve.  Unfortunately, by the time classes began, I could no longer walk, drive, or even hold a water glass.  My body collapsed, as did all of my hopes and dreams for the future.  It was at this point I finally saw a Lyme literate medical doctor (LLMD) in San Francisco, and was diagnosed with Lyme Disease (again), Babesia, Bartonella, and both monocytic and granulocytic forms of Human Ehrlichia.  Although I was finally happy to have some answers and a doctor who not only acknowledged the severity of my illnesses but who was competent and extremely experienced in treating them, it was distressing and overwhelming, and the life I had worked so hard for collapsed around me.   

The course of treatment for these chronic infections, known as Lyme and co-infections, is long term antibiotics combined with diet alterations, immune support, and other holistic/homeopathic supplements and medications.  I had to leave graduate school and was unable to work.  I went from working three jobs and being a full time straight A student who thrived off ambition and success, to being house bound, often times bed bound.  It was utterly devastating.  Everything was taken from me: the work I loved so much, the education I cherished, and many relationships slipped through my fingers.  Through the worst period of my life, all that remained were my pit bulls and my horses.  I will never forget the moment that I realized that even through the darkest hour, there is always light, even if you have to search for it.

After leaving my fiancée who struggled to be supportive through the hardships associated with chronic illness, moving to an unfamiliar place, having to quit nearly everything I loved, I felt overwhelmed and alone.  I didn’t want to live.  I remember sitting on the bathroom floor, handgun loaded and ready.  I just wanted to die.  It was all too much for me to bear; so much grief, loss, and pain flooded my body like a disease itself, it poisoned my spirit.  It was toxic.  I closed the bathroom door and sat down, tears stinging my eyes and eventually pooling down onto the bathroom floor.  My dogs must have sensed something was wrong.  All four of my pit bulls worked together, and somehow managed to open the door.  To this day, I do not know how they managed to do so, but I am so thankful that they did.  My dogs came slowly into the room, and all lay down at my feet and began gently showering me with kisses, washing away the tears and the pain.  I had always had a passion for pit bulls, and for advocating for such misunderstood animals, and it was at that moment I realized that even when you think you have nothing left to live for, there is always a purpose to your life.  I let myself really cry for the first time in years as my dogs comforted and consoled me in a way nobody else could.  Their unconditional love and need for me was invigorating, and it came at the moment I needed it most.  When I was unable to reach out to anyone else, and felt completely isolated and alone and no longer wanted to live, they came forward.  They saved my life and for that, I owe them everything. 

Nearly two years later, I am still incredibly ill.  I am on IV antibiotics, and swallow about ten pills multiple times a day.  I can barely work, and am looking into applying for disability.  Even though this has been an uphill battle and I struggle each and every day, I have learned a lot about myself and those around me.  My best friend and I founded Bully Bark, a pit bull training and advocacy group.  I am also an officer for CHAKO Pit Bull Rescue and Advocacy, a non-profit based out of Sacramento.  I do a lot of rescue work and save many pit bulls, trying to give back to them what they have given to me: hope.  I was misunderstood and mistreated by the medical community for many years, just like these dogs are misunderstood and abused in today’s society, and I feel a connection to their plight.  They are the drive in me to push forward and to live, to make a difference, one day at a time. 

When life seems its worst, and you feel like you can take no more, challenge yourself and your ideals.  You will be surprised how heavy a burden you can carry.  I have many days I cannot leave my house, I can’t drive, I can’t even always leave my bed; but I also have times when I can, and that is where I find joy and happiness. 

There is always a purpose, always a reason to live, and always someone (or something) who needs you.  I am chronically ill, and I may or may not ever fully recover, but it does not, and will never, define me.  I am not my illnesses. What I hope people take away from this really has nothing to do with Lyme, pit bulls, or even me.  It has to do with the human spirit and desire to survive and fight; this innate drive and fire in all of us to be the best we can be even facing seemingly insurmountable odds.  For me, my pit bulls and the work I do with them give me a reason to be on this earth and a reason to fight and stay strong.  Whatever that is for you, hang onto it, indulge yourself, and fight life’s battles head on, and as long as you do that, there is no such thing as losing. 

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Lance Howland (Editor) June 07, 2012 at 05:32 PM
A lot to chew on here, Meryl. Thank you. i like the way you've combined the science and the personal story.
Meryl June 07, 2012 at 05:34 PM
Thank you Lance. It was a hard piece to write, and even harder to share with the public, but I think there are a lot of people that need to hear this type of thing. We all need to know we are never alone in our struggles, even though it often times feels that way. I appreciate the compliment.
Vince Giordano June 07, 2012 at 06:52 PM
Wow - this is a powerful story. I have always had an almost "phobia-like" fear of ticks for this very reason. My question is do you think the misdiagnosis contributed to the worsening of your problem? Thanks, Vince
Meryl June 07, 2012 at 07:02 PM
Vince: yes, it definitely did. For most people, if they catch the infection early (within a few days), and they are treated with doxycycline either orally or via IV, for the appropriate length of time, they will recover. There is a lot we don't understand about how and why certain people develop chronic forms of the infection such as genetic factors, immune system issues, delay in treatment, and the co-infections. I definitely think that I have some genetic predisposition to a more severe case of illness than some, but the delay in diagnosis and lack of proper course of treatment is probably the most significant factor contributing to the severity of my illness. Hope that answers some questions. :-)
Heather Candido June 07, 2012 at 07:04 PM
You are an inspiration! Most people would have given up long ago and lived life defined as their illness. Thank you for all you do for bully breeds and for people! Sharing your story will help hundreds of people not only realize that anything is possible but that the power of love that a dog can have is unmatchable!!
Meryl June 07, 2012 at 07:06 PM
Heather, thank you. This is humbling for me. I appreciate your kind words very much. Thank you again.
ann parker June 07, 2012 at 08:11 PM
My Granddaughter has lyme disease with other co.infections Bartonella and who knows what else, it took 7 years for them to diagnois her thats when the co- infections come in, after having lyme and being misdiagnoised. She is extremely ill, it is in her brain among areas. If the fda wood understand how this epidemic is infecting so many people, instead of fighting the LLdoctors, they should be trying to find a cure. Not bad for a man made disease. Look up Jessie Ventura and lyme disease on plum Island. An Island straight out from Lyme Connecticut. Where the disease was first found. On plum Island scientist did research on the ticks they were trying to make them stronger and deadly for germ wars. Well it backfired and the ticks got loose, the island was straight out from lyme connecticut. Now these little bugs are killing off our own people. why cant the government come and spray these thingts, they know people are dying from these things.
Josette Rhodes June 07, 2012 at 08:20 PM
I am so very proud of you. I have a 17 year old daughter with lyme. She has been sick for years. Same story. At the time she was bed ridden, hardly able to lift her head from the pillow, an angel came into her life. We are not sure of his heritage but we are sure God sent him to us. He is a black, tan and goofy. He went to my daughter Jewel and has never left her side. I do not know where she would be today if he had not adopted her. I believe sometimes we really do have angels without their wings come into our lives. Hang in there. You are strong. You are brave. Thank you for having the courage to share your story. Blessings, Josette
Tasha Brooks June 07, 2012 at 08:36 PM
Thank you for sharing your story! I can relate on so many levels! I have Lyme & Co. which I first got presumably in the early '90s while grooming dogs for a living in Sonoma County. I was reinfected 3 years ago when my Boxer came in from my suburban yard in the Bay Area and had numerous ticks on him. I had three embedded in me by the time I finished bathing him. I knew little of Lyme disease , though my health had been plagued by a pleathora of ailments since my early twenties. I removed the ticks, talked to a doctor friend of mid who gave me a round of Doxy and said that would cover me from any possible infections. I soon felt sick and lesions formed all over me. I went to doctor after doctor. How could they say I was fine? There were holes in my flesh! Perfectly round idenitcle open sores! I was too sick to work- I had been working with a Dog Behaviorist as a handler. I was essentially bedridden by the time a miraculous chance meeting my brother had with one of the producers f Under Our Skin. My brother called me, told me about Lyme. He set up an appt. with a Lyme Liiterate Doc nearby. I've been in treatment ever since. I may not ever be 100% well. But I'm able to function, to be a single parent to my kids, to enjoy simple walks with my dog again.
Meryl June 07, 2012 at 08:38 PM
Thank you so much Josette. If your daughter needs any support, feel free to send her my way. I have a facebook page. Thoughts and prayers your way.
Meryl June 07, 2012 at 08:39 PM
Tasha, I'm so happy you are on the road to recovery. I hope you continue to improve.
Wendy Vogt June 07, 2012 at 08:45 PM
Thank you for writing this so eloquently. I think this is actually a huge part of your healing... telling your story and getting it out leaves you free to let it go and focus on keeping your eye on the prize: getting your health and life back. I live in CA too and am also disabled with Lyme, Babesia, Bartonella, and erlichia (sp?). This disease strips you down to the bare metal and forces you to find something powerful to live for. My kid is now 14 and has been my reason for staying strong even when everything around me is collapsing. So i find ways to laugh with her... laughing and just letting go no matter how much pain i am in - and believe me, it is a huge amount i live with every single day. I get it. I really do. You are amazing to have written this and reached out to so many others who are hurting and feel alone. Thank you for your courage and surrender to these challenges.
Michelle McKinstry June 07, 2012 at 09:16 PM
Thanks so much for sharing your story. I was first tested in 1990 while in college. Doctor after doctor, u know this that goes. Finally Spring 2010 after 23 yrs of hell I finally tested positive with co infections. Now I'm getting ready to have my 2nd picc line in. I too have been to the brink, I had many pill bottles I took out of cabinet n I was going to ingest them all. By the grace of God n a fighting spirit I'm still hanging in there. I knew I had a purpose....n that my day would come to the reason y. I feel blessed that it hasn't taken my life as it has for others...I m here to continue this fight n spread awareness so others realize what a life altering disease this can be. Love & light as u continue your journey. Blessings to u n all who fight the battle n those who have passed. May we continue to be the voice for those no longer with us.
nicole foggiato June 07, 2012 at 09:53 PM
This is beautiful. I was almost to tears by the end of this. You are a beautiful person who is bringing hope and awareness to so many people out there, whether its for Lyme disease, Pit bulls or who we are as human. Thank you so much for sharing this with us all. Lots of love from my pack and me!
Meryl June 08, 2012 at 12:29 AM
Thank you to everyone. I appreciate the kind words and support more than you will ever know. My goal in sharing my story was to reach out to others, and I am humbled and so grateful to have been given the opportunity. Love you all. -Meryl
DArla Brown June 08, 2012 at 01:45 AM
Very well written story. Unfortunately it's a lot like many people I know including myself. I would advise you to go ahead and apply for social security disability as it usually takes a couple years to get it and through a lawyer at that. This way you can still volunteer for the pit bulls and allow your body to rest and recover. May I also recommend a book called The Tick Slayer. It's a very good personal success story of a girl who has "cured" herself of lyme and it gave me great hope. Hope of getting back to 100% and not settling for anything less. Prayers to you my friend. Never give up. Your story is an inspiration...thank you for sharing it.
Kim June 08, 2012 at 03:02 AM
Thank you so much for writing this, I'm also a victim of Lyme and Co-infections...Your words echo my own in many ways. Bless those sweet bully's! It is my hope that you and I and the rest of us suffering from this awful disease reach recovery!
Stephanie V June 08, 2012 at 04:01 AM
I like your article. I live in Pleasant Hill, CA and dealing with Lyme Disease too.
Meryl June 08, 2012 at 04:37 AM
Stephanie V...find me on facebook!
Meryl June 08, 2012 at 04:37 AM
Thank you.
Barb bennett June 08, 2012 at 08:44 PM
Meryl..you are a trooper..I have a friend with Lyme with similar diagnoses too..she is going through a lot right now..dr Dennis Bouboulis in Connecticut is a specialist...Nd treats many, many people with all of the things you have..he is in Darien, ct...you hang in there girl! You are a trooper and beautiful!
Grace Alongi June 10, 2012 at 04:25 AM
I just read your story and you are extremely strong! You are amazing and I am glad you are able and doing more than just surviving you are educating, thriving, and using your story to help strengthen others! My Pitbull/ German Shepherd mix helped me feel less alone when I almost all of my friends left me. Every time I started crying she came up and gave me a whole bunch of kisses always cheering me up! I love how you wrote everything so inspiring! Remember the more you believe you will heal the more you will feel healed! You are amazing girl keep it up and you will continue to help 100's, 1,000, and even more! Keep using your voice and you will continue to touch many people's hearts with your inspiring story! Just like you said there is always a purpose and a reason to live! You are so amazing words can't even describe! Keep staying happy and enjoying the things you love and you will continue to attract those good things! Much love xoxo -Grace
Patricia Harris June 10, 2012 at 07:55 PM
Thanks for sharing and caring for yourself. Pat
Patricia Harris June 10, 2012 at 07:58 PM
interested
Thank you for sharing your story and for the work that you do.
Anne Mobley June 12, 2012 at 05:48 AM
What a story! I can only imagine your frustration. I knew little of this disease until hubby and I went to see one of our favorite entertainers who was appearing locally. We had not seen him in a few years. To our surprise, he practically had to be carried to the stage as he could not maneuver the steps to the stage. I thought he had Lou Gehrig's disease as I had known someone years ago who lost all muscle control. We found out it was Lyme's Disease. I pray that you will find a complete cure. It is sad that someone so young has been so plagued. Keep up the positive spirit.
Joan October 18, 2012 at 08:48 PM
What an inspirational story lots of love and light to you and your angel pittie babies xxxx
cheriebnyc March 06, 2013 at 07:52 PM
Striking story on many levels - my father went through a terrible experience with Lyme but after *finally* finding a competent doctor and the right treatment, he DID get better. Those dogs are so awesome - they are such sensitive and intelligent creatures. thank you for taking a stand on their behalf!
Y Rose August 23, 2013 at 12:35 AM
Dear Meryl, I hope that you are well or at least doing better. Can you please provide me with the name of your LL doctor? I live in Martinez, CA and I brlievd that I have early stage 2 Lyme Disease. If you can't post the doctor's name publically, let me know and you could maybe FB or email me. Thank you in advance!!!

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