Story -

LYME DISEASE is KILLING ME

LYME DISEASE is KILLING ME

If someone walked up to me three years ago and told me I would be bedridden from a tick bite…I would have laughed.  Unfortunately, I am unable to laugh anymore…all because of a little tick bite.  
 
It took three years, six MRI’s, two CT scans, five ultrasounds, two EKG’s, one C-Spine, one L-spine, and one spinal tap to identify the root of the evil disease that destroyed my life.  
 
There is no cure for the condition I am in and it is very difficult for me to cope with living this way. 
 
Over the past three years I have lost a lot of friends because I wasn’t able to go out and party anymore.  I lost my job because I was unable to work.  I lost my health insurance because I lost my job.  Fortunately, I have an amazing family who did not let me give up on myself and I have the love of my life still by my side.  
 
So far I have been diagnosed with Chronic Lyme disease, Fibromyalgia, Pseudotumor Cerebri, Celiac disease, Chronic Fatigue Syndrome, Organic Brain Syndrome, High Blood Pressure, tachycardia and patellar instability.  Throughout this ordeal I also managed to develop severe anxiety and depression.  
 
Every couple of months, I visit with a Lyme specialist in Houston, Texas and Skype with another Lyme specialist in Orange County, California.    
 
Before my diagnosis I was actually told by a doctor that I was too young and pretty to be sick.  Another doctor looked at me and simply said it was physically impossible for me to have Lyme because it only existed up north.
 
It is beyond frustrating when people don’t take me seriously or believe me when I describe how sick I am feeling.  Just because of the way I look I was told by doctors and some friends that I was fine…that my symptoms were all in my head.  
 
Well I don’t wake up everyday and ask to have recurring headaches and a low grade fever at all times.  I don’t wake up everyday and ask for my entire body to ache as if I have the flu.  I don't ask to get seizures in my legs or have persistent insomnia.  I don’t wake up everyday and ask to have absolutely no energy so that I can barely make it from my bed to the couch.  I also don’t suddenly think to myself…today is the day I want to have a rash on my stomach and experience the worst stomach pain ever. 
*Attached is a picture of my stomach when I was in the Emergency Room.

My symptoms are physical.  Not all in my head.    
 
I was hospitalized three times last year due to the severity of my symptoms.  I have tachycardia and my blood pressure remains at a dangerously high level despite being on two different medications for it.  No doctor has been able to find out why my heart beats at an average rate of 140 – 205 bpm.  I have been told at the age of 28 that I am a walking heart attack.  I have to follow a strict gluten-free and organic diet.  I take 18 different supplements and medications daily.  I am not allowed to exercise and have to keep my stress level at a minimum.  Living with this disease is stressful enough in itself. 
 
I nearly died twice after my first hospital visit.  
 
During my first hospital visit, the doctors changed my medications and prescribed me three new ones.  At the time I was not aware the dosages were too strong for my body and I took each pill as directed.  
 
It took only two weeks for the medicine to build up in my system and cause black outs with suicidal tendencies and actions.    
 
The first episode occurred when I was in the car with my mother and brother.  I asked my mom to pull over on the side of the highway.  I suddenly jumped out of the car and walked across the first two lanes of traffic.  I then stood in the middle of the second lane.  A pickup truck barely swerved in time to spare my life.  I then continued to cross two more lanes of traffic traveling the opposite direction.  My mom followed me the entire way trying to get my attention.  She finally caught up with me and when she turned to face me she realized I was not mentally there.  I had completely blacked out.  She started shaking me and I woke up.  I instantly started crying and I had no clue where I was.  She walked me back to the car and immediately called the doctor to inform her of what happened.
 
During my second hospital visit, I was waiting in the ER for a doctor.  I was talking to my family and I suddenly grabbed the first bottle of pills I found in my purse.  I put all the pills into the palm of my hand.  I began to bring them to my mouth and my mom jumped on top of me and started screaming for help.  I woke up in a hospital bed with members of the hospital staff surrounding me.  I had no recollection of the second incident.  Luckily, I happened to already be in the hospital and they were able to find the cause of why I kept blacking out.  
 
The side effect for each medicine I was on at that time included “suicidal thoughts or actions”.  In my case it was proven to be true on all three.        
 
Lyme continues to migrate throughout parts of my body.  I go to bed with at least ten symptoms and awake in the morning with ten different symptoms.  When Lyme settled in my knees, my kneecaps turned inwards and I became bedridden.  I currently wear braces on both knees.  
 
My most recent blood work and tests show I have blood clots on my brain and a co-infection in my lungs.  I physically cannot have a PICC line put in because my veins are too small and it would be too dangerous considering I already have blood clots.

I miss little things that I used to take for granted.  I miss going outside.  I miss seeing friends.  I miss driving my car. I miss sleep. I miss being able to eat food that isn't gluten, wheat, soy, dairy and sugar free.  Most of all, I miss the days when I didn't have to miss these little things.

I know I have a long road ahead of me and I continue to move forward with the support of my family, friends and my one true love.

Since my diagnosis in 2011, I have tried all antibiotics (including IV therapy) to help reduce the severity of the disease.  However, all medication has failed to put me into remission and I continue to live with severe symptoms.

As of August 16, 2013 I have made the decision to no longer continue my Skype appointments with the specialist in California.  It took me six months of treatments and $7,000 on my Visa card to realize no progression with my health has been made.  Even though I feel defeated, I refuse to give up on myself.  I look at this as a new step toward the beginning of the end.  Now I will begin my search for a holistic doctor located in Texas and pray for my happy ending.

© 2013 Valerie Lynn. All rights reserved.

***UPDATE AS OF OCTOBER 2014***

It has been over a year since I posted this story. So far no progress has been made. I had a major full blown seizure in July 2014 and I was rushed to the hospital in an ambulance. Thanks to my love who was there at the time and called 911 right away I am still alive. As of two months ago I am seeing a new holistic doctor two hours away from where I live. I hope she can help me for now. I found a doctor in a different state who has a treatment that will help with my symptoms but of course there is no cure. Moving to a different state is my ONLY hope to have a somewhat normal life again. My fiancé is currently working to save up so we can move for my treatment. We hope we will only have to wait another year until we are able to accomplish our goal. Until then I try to keep my hopes up high and remain positive even though some days that seems impossible. 

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Valerie Lynn

Thank you both for your comments and the Lyme information! <3

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Danielle Badams

Thinking of you!! I cannot comprehend what you must be going through!! I have found SO much help in my life with holistic healing called 'Life Alignment' by Jeff Levin. They can skype if you ever wanted to look into it. Its just incredible energy work!! Just wanted to share. If you have never seen seen the Lousie Hay movie - 'You can heal your life' is AMAZING as well :) Perhaps its not on Lyme but an amazing explanation of changing our lives and the way we think :) I pray you may see some sort of brightness in every day in anyway :) sending love 

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Valerie Lynn

Thank you Danielle for your sweet message and the information. It's crazy how you mentioned the holistic approach as I actually made an appointment today for a new and holistic doctor that I see next week. I believe this is going to be the right type of doctor this time. I'm super excited :)

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Danielle Badams

That is SO exciting Valerie!! You are so strong and are teaching us SO much about life and how precious EVERY little moment is!! :) Hope to hear some more from you in the near future!! Praying for you :)

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Jimmy Arnold

Wow Valerie,

I was blown away when i read this story and sympathy, will not be what i will offer, because you have not placed this story here, for that reason,but you did place it here for the sole purpose, of allowing us all, to see how valuable life is and how easily, something such as this, can invade it and attempt, to remove all of the simplicities in our lives that i and many more before me, have taken for granite and held not, valuable to our hearts. At all times, shall the smallest little episode or simplest little matter take credence in our lives and how we should cherish it, every waken day, we have been entrusted with it by God.You are what i thought, (up to this day), once only existed within the manuscripts, of a man written book,(the dictionary) which is in true essence and a value placed beyond any value, in the word (courageous) and beyond anyone's beliefs.My heart sunk, when i read this story but once again, was it placed back into perspective and upliftment, as i read of the power,(even you to this day), you continue to contain, in your heart and those, that so lovingly and faithfully, remains so compassionately with you,every step of this battle.I really take my hat off to your family members and male friend, for their love and admiration for you, throughout all you have been faced with and still are, so valiantly battling.You (Valerie), are a true version of a hero, (unsung) but through your story,the song you have entrusted to our ears, have been sung by the choirs of all the angels in heaven at your side and through their song and with Gods will,shall you once again, do all the things you once loved doing and with those, you shared those passions with.Thank you for allowing us to come into your life, through this story and through prayer and faith, fight this fight along with you and your loved ones.So when you allow yourself to sleep tonight,(for you will sleep), know deep within your heart, that you and yours, is not alone, in this quest, for your full and strong recovery, to being the care free person you once again, long to be.All the unabated steps needed to be taken, we will unselfishly take them for you, until you are capable of not only, (without any assistance) once again, take them yourself but being able to run them as well.....Dale Cooper is a wise man and i too have sought his advice on major medical issues,(for my mother) and she have accomplished many feets through his advice, that no doctor had even spoken on, in her behalf and to this day,she continue to speak very highly of this man, to all that ask of her productive and highly successful, medical regiment.He gave her healing  advice, when the doctors had none, are no more to give and he will always remain a friend of mine....You continue to take complete and healing care and please remain positive, even through all you have been through.Your testimony of your hard fought battle, through this story, will be the major factor, in your allowing us all, to help you defeat it..........My prayers for you and yours, are extremely strong and forever continuous and rest to be assured, you are a fighter and must continue to fight and realize, just as you yourself stated, that this is the beginning of the end of your plight but the start of a new you to come, in the eyes of us all...I Have a hard prayer for you tonight and until your plight, has been abolished for good.        

Always Kept in Prayer,

Jimmy

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Valerie Lynn

Jimmy,

I wish I could give you a hug.

I am beyond words to say...

I truly thank you from the bottom of my heart for you to take the time to write me such a powerful and comforting message. Thinking about what you said will actually help me go to sleep tonight. Thank you for your prayers. You are so amazing and compassionate and I cannot thank you enough for how you made me feel. I feel at peace right now and I look forward to the future and next week as I am going to see a new and holistic doctor. The future looks bright :)

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Jimmy Arnold

Greetings Valerie,

Sorry for the late response, but on the contrary, It's you Valerie, (we all need to hug and thank our (many)lucky stars), that you exist, as our beacon of hope and illustration,, on what faith  perseverance and determination, can do for a person, that has so much of it to give and ask nothing in return, (accept), for what still remains hers to life,(her life back) and we join you and ask for it, for you as well. It's only right and fitting, that this should be done. Your fight is valiant and with all the effort in the world have you made, now it’s Gods turn to pick up the ball and gain the ground, that desperately needs to gained, on your behalf. Hope all is well with you and my prayers remain hard and in full affect…..   

Take Care as always,(your friend), 

Jim   

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Emma Theedom

I'm glad you directed me to this story. I am astounded by your courage. I wish I could meet you in the flesh, so some of your bravery could rub off on me. You are a hero Val.

Everytime I read a story regarding illness, it's becoming a recurring theme in how the healthcare scheme almost seems like they don't really care. When they try to pin it on you and your mental visions that you're ill, when actually, it's very clear you are. I am losing trust in the healthcare system as each week passes. But I will pray for you Val and that you will find your happy ending we all hope for.

And Jimmy's right you know, I couldn't of worded it better than what Jimmy has said. Each episode, each little thing, I hope creates some enlightenment for you eventually. I've realised to appreciate everyone and not hate. There is no time to hate. Everyone has there story and will always want a patt on the back or a hug.

I wish you everything Valerie Lynn. xxx

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Valerie Lynn

Emma - Thank you so much for taking the time to read my story and to leave a comment. What you said was so very sweet. I wish we could meet too :)  Like you I do think the healthcare system is failing us. I found out some really bad news last week that I waited 2 years and 3 months to receive. But I told myself that instead of sitting around wasting away in my own misery to just take it as it is. Since there is nothing I can do to change anything I will just have to accept it and move forward. It did take me over 3 years of living with the constant symptoms to change my outlook on life. I used to be sad all the time and wished I was how I used to be. Some time over the weekend my outlook changed to a more positive aspect. I am not sure what the hell happened. Day by day it is still a struggle to get out of bed but I know one day there will be a reason why all this happened. I will keep you in my prayers and if you ever need someone to talk to you can always send me a message.

Val <3

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POET WILLIAMSJI...

Dear Valerie Lynn,

Your above story posted on 18th August 2013 is heart touching, I am studying the symptoms of this disease, I wish I could complete my writing on you and the disease.

Regards & Love

WILLIAMSJI MAVELI

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Valerie Lynn

That would be wonderful! Every case is different with completely different symptoms. Eventually your organs start to fail and your immune system attacks your body. I did a ton of research when I was first diagnosed. My major symptoms now is it has traveled to my heart. I spend quite a bit of time in the hospital and have many different tests done quite often. I was lucky for a while to have health insurance through my mom and unfortunately we found out we lost the health insurance yesterday. It has been one thing after another lately. I will look for the research I did a few years ago. If I am able to recover it I will be happy to send it to you!

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POET WILLIAMSJI...

Poetess Valerie Lynn,

Believe in GOD, the Almighty, You will be recovered and cured soon. Myself and my family are on our knees for a special devotional prayer sung along with our usual prayers. Keep away from the thoughts of the disease, Read, write and post.

Regards & Love

WILLIAMSJI MAVELI

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Valerie Lynn

WILLIAMSJI - You have brought so much hope and comfort to me in my time of despair. You are absolutely right. I need to keep my head up and look to God and believe in him that he will be the answer I have been searching for. I thank you so very much for your prayers! In fact I cannot thank you enough for your kind and humble words. I haven't been to sleep yet but I'm going to try to get a couple hours of rest and awake with a more positive outlook on life. I will talk to you tomorrow and I will thank God before I go to sleep for having the pleasure of meeting you on this amazing poetry site. God Bless You!

Love Always,

Val ♥️

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Syd

Hi Valerie, 

It took me a while to scroll through your pages to find your story after reading your profile. I'm so glad I did though. I can't begin to imagine what you've been through and are going through. You're an inspiration and a reminder to us all, to value each day and especially value the things we take for granted. In the UK I don't think we have lyme disease. Stay strong, I wish you the best for the future and I look forward to reading your poems. 

Take care - Syd 

 

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