Fighter Survivor

Yesterday, I saw my doctor to get the results of my CD57 blood test and to discuss my symptoms and medications.  I was disappointed to see my CD57 level drop again, but not destroyed!  Truthfully, I've been fighting this fight long enough that a breakdown just hasn't occurred.  I'm happy that I am handling everything, but don't think I won't cry if I need too.

Through this Disease, I really have been blessed.  I am blessed with a loving family that willingly takes care of my every need.  They bend over backward for me.  I have a wonderful support system, packed with close friend, that encourages me, prays with me, cries with me...they are just amazing!  And I am blessed to have gained and continuing to gain new Facebook friends that are better known as Lymies!  I love them all!

I won't lie, this past month has been extremely difficult.  I have been having numerous seizures, have developed ataxia, have experienced symptoms of paralysis, a really sore throat, and major pressure in both ears.  As a result, I have spent most of my days either sleeping in bed or the recliner, or even the car when going to and from appointments (don't worry I'm not driving).  I have cried a lot as Jeff (hubby) has tried to massage my feet and legs to get them out of intense cramps and paralysis. 

June has started off with numerous seizures, blurry vision to where I can hardly see what I am writing at this present moment.  But, I'm not going to allow this disease to make me a victim regardless of how much pain I am in.  Jesus Christ is with me and making me into a Fighter Survivor!

When will I see my body healed is a good question.  That is completely up to God.  He will either heal me here or when He takes me home. I trust in the Lord with all my heart!  He loves me like no other.

Thank you for your continued prayers, encouragement, love and support!

Love,
Sydni

Pit Bulls, Lyme, and Life by fellow Lymie, Meryl Cohen

Pit Bulls, Lyme, and Life

By: Meryl Cohen

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. 

Strength For Today

Oh Lord, I thank You for answered prayers for strength for today!  Your mercy and grace are such a treasure to me.  Nothing can compete with Your love!

Last night on Facebook, my dear friend Beena David asked what your one wish would be for tomorrow.  I simply answered to walk in the sunlight.  In my head I knew this had a slim chance of happening.  See I've really been struggling with my sleep.  I have been going to bed around 11:30PM and not waking up until 5PM, usually only because my husband is determined I'll eat something for dinner.

I went to bed last night thinking about how I answered Beena's question (by the way, my dear friend said she would give up her wish to see mine come true) and what the possibilities of it happening would truly be.  I prayed that God would take my hand, even for just a moment, and take me outside in the morning.

To my complete surprise I woke up at 8:20AM.  I had to lay there in bed to determine if I was dreaming or if I was really awake.  By about 8:45AM, I was putting my shoes on to go outside (many of you know that I walk with a quad cane and get very nervous about walking outside alone).  As I stepped outside on the patio this peace just overwhelmed me.  My mind was clear.  God took my hand and led me about 10 feet to the garden.  He wanted me to experience His creation.  He showed me some beautiful flowers that had taken bloom.  He wanted me to feel His presence and nothing else.  Folks, there was no pain of any kind in my body.  I truly believe Jesus was using this moment to remind me that He is only a prayer away.  

As I write this, I am experiencing some pain, but I know God gave me that moment of relief to be free in His Healing hands.

It wasn't a sunlit day, and I didn't take a long walk, but God was with me and He didn't leave me in the dark.  I thank Jesus for this precious time with Him, especially as He reminded me that I am a living testimony that He is using for His glory.  I also thank Beena for asking her question.  Without her I don't know that I would have had this experience.  I probably would have just gone through a regular day of laying in the dark.  Instead, I experienced the SON light!

May is LYME Disease Awareness Month

Do Your Tick Checks and Wear Your Lyme Green  

A Lyme's Update

This was an appointment I was dreading do to.  I had Jeff came into the appointment, simply because I get tired, scared, and confused.  I simply eyed Jeff, as I sat down for unexpected blood draw.  This blood test was for thyroid levels.  This is because my thyroid needs to be at a specific level whether that is increased, balanced, or decreased.  After two attempts, poor Ian had to call it quits.  In my appointment, first thing first was discussing the CD57 level.  It was down to 132.  It decreased from a month ago, which was 136.  We are going to test again in a month.

Dr Knight is thinking that my thyroid level might be affecting my body to get enough so I'm not sleeping all the time.  If so a med change the way would result in some kind of direction and hope that my body decreases.

I am starting protocol #4 antibiotic, Flagyl.

Dr. Knight believes that my shaking, awake and asleep, is indeed a seizure disorder, but right now she wants to work on the Lyme's because it can cause such symptoms like seizures.  I'm having problems  with my vision as well and again, we think it is medicine related.

Basically, we are in in a wait and see moment.  Tomorrow will be better as I see my chiropractor.  

I appreciate you following this page and praying for me and my family.


God bless & much <3,
Sydni

 

Good News!!!

I am so excited to tell you that my doctor just emailed me with good news.  After 7 weeks of oral antibiotics, Praise the Lord, my CD57 level is at 135!  This is the best it has ever been with oral medication.  The highest it's ever been with 148 and that was on the PICC line IV antibiotics.  That's only a 13 point difference, which is amazing.

I am very blessed because I have talked to other Lymies that are getting CD57 scores between 16 - 40.  I've realized that even though I am in pain and feel really sick, it could be worse.  

God is not evil.  He didn't curse me with this disease.  God is LOVE!  If it weren't for my relationship with Jesus Christ, I would not be able to fight this trial.  I personally don't have the strength to survive this on my own, but with Jesus, He strengthens me and carries me through this nightmare.  

I am scheduled to see my doctor next Monday, so if I learn anything new I will pass it on to you.  I thank you for your love, prayers, and support.

Love - Sydni

Feeling Lousy

I have been feeling lousy lately.  I don't know if it is from the antibiotic change, the crazy cold one minute warm the next weather, or just feeling overwhelmed to get things done.  Tomorrow I return to the Neuro-Psych Doctor about the testing I had in February.  I must admit that I am nervous.  If things come back with a diagnosis, then we will know the problem and hopefully how to treat it.  But, if things come back with no diagnosis or a very minimal idea for why this is happening then I'm left wondering.  The question would be what is causing the cognitive and memory problems.  I would be lying if I said I wasn't anxious.  Worst case, I see my counselor on Friday so I can vent then. Depending on what I find out tomorrow I just might text message her.  My goal is to send a blog message out to all of you tomorrow.  Please keep me in your prayers and thoughts.  Thank you & Much Love - Sydni

Step 2

I started step 2 of the new antibiotic protocol last night.  I am now on 875mg of Amoxicillin twice a day.  Today I slept until 3PM.  I am feeling loopy and kind of lousy, but I'm fighting through.  I just wanted to give a quick update.  Thanks for your love and support!