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
Wednesday, June 6, 2012
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.
Wednesday, May 2, 2012
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!
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
Thursday, April 19, 2012
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
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
Monday, March 19, 2012
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
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
Tuesday, March 6, 2012
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
Thursday, February 23, 2012
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!
Wednesday, February 8, 2012
Enduring Suffering
This past Sunday we had a guest speaker at church. His name is Tim Saddler and he works with IBSA, which is the Illinois Baptist State Association. He spoke on Disciples Making Disciples, but part of his sermon was on enduring suffering. I want to share with you what he shared with us.
The Scripture Reading was taken from 2 Timothy 2:1-10....
You then, my child, be strengthened by the grace that is in Christ Jesus, (2) and what you have heard from me in the presence of many witnesses entrust to faithful men who will be able to teach others also. (3) Share in suffering as a good soldier of Christ Jesus. (4) No soldier gets entangled in civilian pursuits, since his aim is to please the one who enlisted him. (5) An athlete is not crowned unless he competes according to the rules. (6) It is the hardworking farmer who ought to have the first share of the crops. (7) Think over what I say, for the Lord will give you understanding in everything. (8) Remember Jesus Christ, risen from the dead, the offspring of David, as preached in my gospel, (9) for which I am suffering, bound with chains as a criminal. But the word of God is not bound! (10) Therefore I endure everything for the sake of the elect, that they also may obtain the salvation that is in Christ Jesus with eternal glory. (ESV)
Enduring Suffering simply means taking suffering patiently. Easier said I know, but it is surely possible if you're willing to try. Pastor Tim Saddler said, "If you can run through the pain, you will win the race." Believe it because everything is possible with Jesus Christ.
Pastor Saddler said there are 3 ways that we should endure during our suffering...
1) Like a soldier (vs. 3-4)
2) Like an athlete (vs. 5)
3) Like a hardworking farmer (vs. 6)
This week every aspect of enduring during suffering has taken place in my family. Sunday night my mother was enduring like a soldier. She was using a table saw and cut off her index finger and mangled her middle finger. After being in 2 ambulances and 2 hospitals, unfortunately both fingers were unable to be reattached. In the midst of this trauma, she has stood like a soldier and comforted everyone else. She has shared her faith with everyone, including me. I was angry with God, but she reminded me that God is in the midst of it and he protected her from things possibly being worse. Mom has stayed focused on the mission and is sharing God's love.
Monday, my sister endured like an athlete. She ran through the pain to the other side. On the first day of her new job she suffered from 2 Grande Mal seizures and was taken to the hospital where she was hooked up to a Video EEG. Talk about a Massive Headache! On Tuesday they removed the lead wires, but she didn't get to come home. Knowing my sister I believe this was the hardest part for her. She came home this morning and is doing well. This situation was just one more thing to add to her testimony. She made it to the other side by trusting in Jesus Christ.
As you all know I have Chronic Lyme's Disease. Yesterday evening I had a petit mal seizures. I strongly believe this is due to a Lyme's flare up and the stress of the traumas that have occurred in my family. I'm enduring my suffering like a hardworking farmer. Each time I share my story, it gives me a chance to share my relationship with Jesus Christ. I can honestly say that without Jesus I wouldn't be where I am today. I know that God will heal me in His perfect timing whether that is here on earth or as He heals me home.
Part of being a Soldier, an Athlete, and a Hardworking Farmer is preparing daily. God has worked in all of us and He prepared us for our suffering. We may not understand why these things have happened, but God had it all worked out. Spending time with Jesus by reading the Bible, Singing Praises to Him, spending time in prayer is part of our daily preparation.
So why does God allow us to endure suffering? So that those who have not heard the Word of God may have a chance to develop a relationship with Jesus. We are Disciples with the desire to make other Disciples.
The Scripture Reading was taken from 2 Timothy 2:1-10....
You then, my child, be strengthened by the grace that is in Christ Jesus, (2) and what you have heard from me in the presence of many witnesses entrust to faithful men who will be able to teach others also. (3) Share in suffering as a good soldier of Christ Jesus. (4) No soldier gets entangled in civilian pursuits, since his aim is to please the one who enlisted him. (5) An athlete is not crowned unless he competes according to the rules. (6) It is the hardworking farmer who ought to have the first share of the crops. (7) Think over what I say, for the Lord will give you understanding in everything. (8) Remember Jesus Christ, risen from the dead, the offspring of David, as preached in my gospel, (9) for which I am suffering, bound with chains as a criminal. But the word of God is not bound! (10) Therefore I endure everything for the sake of the elect, that they also may obtain the salvation that is in Christ Jesus with eternal glory. (ESV)
Enduring Suffering simply means taking suffering patiently. Easier said I know, but it is surely possible if you're willing to try. Pastor Tim Saddler said, "If you can run through the pain, you will win the race." Believe it because everything is possible with Jesus Christ.
Pastor Saddler said there are 3 ways that we should endure during our suffering...
1) Like a soldier (vs. 3-4)
2) Like an athlete (vs. 5)
3) Like a hardworking farmer (vs. 6)
This week every aspect of enduring during suffering has taken place in my family. Sunday night my mother was enduring like a soldier. She was using a table saw and cut off her index finger and mangled her middle finger. After being in 2 ambulances and 2 hospitals, unfortunately both fingers were unable to be reattached. In the midst of this trauma, she has stood like a soldier and comforted everyone else. She has shared her faith with everyone, including me. I was angry with God, but she reminded me that God is in the midst of it and he protected her from things possibly being worse. Mom has stayed focused on the mission and is sharing God's love.
Monday, my sister endured like an athlete. She ran through the pain to the other side. On the first day of her new job she suffered from 2 Grande Mal seizures and was taken to the hospital where she was hooked up to a Video EEG. Talk about a Massive Headache! On Tuesday they removed the lead wires, but she didn't get to come home. Knowing my sister I believe this was the hardest part for her. She came home this morning and is doing well. This situation was just one more thing to add to her testimony. She made it to the other side by trusting in Jesus Christ.
As you all know I have Chronic Lyme's Disease. Yesterday evening I had a petit mal seizures. I strongly believe this is due to a Lyme's flare up and the stress of the traumas that have occurred in my family. I'm enduring my suffering like a hardworking farmer. Each time I share my story, it gives me a chance to share my relationship with Jesus Christ. I can honestly say that without Jesus I wouldn't be where I am today. I know that God will heal me in His perfect timing whether that is here on earth or as He heals me home.
Part of being a Soldier, an Athlete, and a Hardworking Farmer is preparing daily. God has worked in all of us and He prepared us for our suffering. We may not understand why these things have happened, but God had it all worked out. Spending time with Jesus by reading the Bible, Singing Praises to Him, spending time in prayer is part of our daily preparation.
So why does God allow us to endure suffering? So that those who have not heard the Word of God may have a chance to develop a relationship with Jesus. We are Disciples with the desire to make other Disciples.
New Lyme's Antibiotic Protocol
Dr. Knight has started me on a Lyme's regiment. Here is the following information so you can follow along....
1st 4 weeks - Doxycyline - Jan 24 - Feb 20
2nd 4 weeks - Amoxicillin - Feb 21 - Mar 19
Week 7 - CD57 (blood test) week of March 13th
3rd 4 weeks - Malarone & Biaxin - Mar 20 - Apr 16
4th 4 weeks - Flagyl & Bactrim - Apr 17 - May 14
Week 15 - CD57 (blood test) week of May 8th
This is subject to change depending on how I am responding to each medication. Assuming this regiment works (shows improvement) then it will most likely be repeated. I have no idea how long this protocol will continue. I'll do my best to keep you posted.
1st 4 weeks - Doxycyline - Jan 24 - Feb 20
2nd 4 weeks - Amoxicillin - Feb 21 - Mar 19
Week 7 - CD57 (blood test) week of March 13th
3rd 4 weeks - Malarone & Biaxin - Mar 20 - Apr 16
4th 4 weeks - Flagyl & Bactrim - Apr 17 - May 14
Week 15 - CD57 (blood test) week of May 8th
This is subject to change depending on how I am responding to each medication. Assuming this regiment works (shows improvement) then it will most likely be repeated. I have no idea how long this protocol will continue. I'll do my best to keep you posted.
Saturday, February 4, 2012
A Long Week
My doctor seems to have a protocol just about together. I just have to check on a few things before I post it for all of you. It includes rotations of antibiotics and blood work. In addition we are trying to get me started with physical therapy. Hopefully all of this will help me to feel better. It won't cure my Chronic Lyme's Disease, but it will treat the symptoms and God willing we will see some improvement.
I know that God is in control and I am doing all I can to place my trust in Him. I would greatly appreciate any thoughts and prayers for Jeff and me. Jeff is busy with work and taking care of me, while suffering from his own back pain (his back is severely misaligned...hoping to get the insurance to cover chiropractic care). Please just pray that we will both be out pain and that we will remember that we are in the palms of God's hands.
Love - Sydni
Wednesday, January 25, 2012
Beginning the Test
Today I began with the Neuro-Psychologist for Neuro-Psych testing. Today we completed 2 hours of history and I am SO thankful Jeff was there to help me answer some of the questions. At one point I became so overwhelmed that I became emotional. I guess that can go with it.
The actual testing is February 9th and 16th for a total of 6 - 8 hours. I am having this testing done because I am having increasing cognitive issues. The doctor even noted some issues today in taking my history. I must admit that I am fearful and anxious, but I guess that is normal.
Today a friend reminded me of the voice of TRUTH. That truth comes in many forms and can even hurt, but it just depends on the circumstance. Truth is Truth and we can either ignore it or accept it no matter how painful it might be. The doctor also touched on this subject saying that it is better to know what is going on and be able to treat it or learning techniques to help it, than to ignore the problem and possibly let it get worse.
So instead of worrying I am going to do my best to put GOD first. Recently I received an email about an individual with Developmental Disabilities that believed God was living under her bed. How awesome to have Hope, Love, and Protection under the bed instead of the monsters that most of us grew up believing. Now, when I go to bed not only do I believe that God is with me, but in my prayers I ask Him to surround me in my bed and to protect me from nightmares and fears. He is helping me to let go of my worries and fears and helping me to focus on the TRUTH. What a blessing!
So as I prepare for the remainder of these tests I won't make room for the monsters, but for GOD, He can have total control.
As for the LYME's Treatment.... I have a sinus infection so I was started back on Doxycycline, which is also a medication I have taken for the Lyme's. So hopefully this will kill off the infection and work to increase my CD57 numbers.
Thanks for all of your prayers. I love you all.
Love - Sydni
The actual testing is February 9th and 16th for a total of 6 - 8 hours. I am having this testing done because I am having increasing cognitive issues. The doctor even noted some issues today in taking my history. I must admit that I am fearful and anxious, but I guess that is normal.
Today a friend reminded me of the voice of TRUTH. That truth comes in many forms and can even hurt, but it just depends on the circumstance. Truth is Truth and we can either ignore it or accept it no matter how painful it might be. The doctor also touched on this subject saying that it is better to know what is going on and be able to treat it or learning techniques to help it, than to ignore the problem and possibly let it get worse.
So instead of worrying I am going to do my best to put GOD first. Recently I received an email about an individual with Developmental Disabilities that believed God was living under her bed. How awesome to have Hope, Love, and Protection under the bed instead of the monsters that most of us grew up believing. Now, when I go to bed not only do I believe that God is with me, but in my prayers I ask Him to surround me in my bed and to protect me from nightmares and fears. He is helping me to let go of my worries and fears and helping me to focus on the TRUTH. What a blessing!
So as I prepare for the remainder of these tests I won't make room for the monsters, but for GOD, He can have total control.
As for the LYME's Treatment.... I have a sinus infection so I was started back on Doxycycline, which is also a medication I have taken for the Lyme's. So hopefully this will kill off the infection and work to increase my CD57 numbers.
Thanks for all of your prayers. I love you all.
Love - Sydni
Sunday, January 22, 2012
Been Awhile
Sorry Folks, it's been a long while!
Summary.... the best way to sum things up is to say I had a PICC line in the spring/summer after having been hospitalized in late March 2011 due to a reaction to such a high dose of antibiotics to attempt to kill of the Lyme cells. After receiving the PICC line I received IV antibiotics for about 3 months until my line became infected. The highest my CD57 level got was 148. Our goal is over 200. Post the PICC, my CD57 level has continued to drop and as of my appointment this last week it was down to 99. The lowest it has ever been was 83.
As you can probably guess, I am depressed. I am unable to drive so I am totally dependent on others to go anywhere. My parents, mother-in-law, and husband have been driving me to appointments and occasionally out to eat or a store. I have a bad case of cabin fever and am craving a vacation. Hopefully Jeff and I can go to the beach later this year. Maybe for our 10 year wedding anniversary in September.
My doctor is presently working on developing a medication protocol of antibiotics that I hope to begin soon. I have been off of antibiotics since October 2011; my year of treatment mark.
On November 5, 2011 we celebrated my sister Jen and my new brother-in-law, Brian's wedding. I was blessed to be their matron of honor and I was able to walk down the aisle without my quad cane. I was even able to dance that night at the reception. It was an answer to prayer.
Recently, I have started having spells of blurry vision and even blacking out. I fell down the stairs twice last weekend. Fortunately, I was just sore and had no major injuries.
It's my goal to be more active and keep you better posted on my diagnosis of Chronic Lyme's Disease. I hope that if you know anyone with Lyme's this blog can provide them with education and hope. Also, if you have a chronic disease of some sort share it with me. I would love to be in prayer with you. For I know we are in the Healing Hands of Our Savior, Christ Jesus.
With Love - Sydni
Summary.... the best way to sum things up is to say I had a PICC line in the spring/summer after having been hospitalized in late March 2011 due to a reaction to such a high dose of antibiotics to attempt to kill of the Lyme cells. After receiving the PICC line I received IV antibiotics for about 3 months until my line became infected. The highest my CD57 level got was 148. Our goal is over 200. Post the PICC, my CD57 level has continued to drop and as of my appointment this last week it was down to 99. The lowest it has ever been was 83.
As you can probably guess, I am depressed. I am unable to drive so I am totally dependent on others to go anywhere. My parents, mother-in-law, and husband have been driving me to appointments and occasionally out to eat or a store. I have a bad case of cabin fever and am craving a vacation. Hopefully Jeff and I can go to the beach later this year. Maybe for our 10 year wedding anniversary in September.
My doctor is presently working on developing a medication protocol of antibiotics that I hope to begin soon. I have been off of antibiotics since October 2011; my year of treatment mark.
On November 5, 2011 we celebrated my sister Jen and my new brother-in-law, Brian's wedding. I was blessed to be their matron of honor and I was able to walk down the aisle without my quad cane. I was even able to dance that night at the reception. It was an answer to prayer.
Recently, I have started having spells of blurry vision and even blacking out. I fell down the stairs twice last weekend. Fortunately, I was just sore and had no major injuries.
It's my goal to be more active and keep you better posted on my diagnosis of Chronic Lyme's Disease. I hope that if you know anyone with Lyme's this blog can provide them with education and hope. Also, if you have a chronic disease of some sort share it with me. I would love to be in prayer with you. For I know we are in the Healing Hands of Our Savior, Christ Jesus.
With Love - Sydni
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