Your New Lyme Anthem (and some random football commentary)

An incredible woman once told me that when her husband, who was undergoing treatment for Chronic Lyme along with a myriad of co-infections, got really down and depressed she would turn on Christian praise music. Even if it is just in the background, it would help lift his spirits and change his mood.

This past weekend, after getting some very encouraging news from my LLMD on Thursday, I went through a really rough herx that lasted for days. Admittedly, I threw myself a pity party.

I am finally well enough on certain days that I can get out of the house and someone had given me and my boyfriend tickets with incredible seats to the Bama vs. Florida football game. (I apologize in advance to any Gator fans that may be reading this blog).

Quick Disclaimer: If you have no interest in college football skip the next few paragraphs...I finally make my point and I will place an asterisk where you should start reading again.

I was a student when Tyrone Prothro, famously known for making one of the most incredible catches in NCAA history (see video of "The Catch"...and picture...can you tell I'm college football obsessed?!), suffered a career-ending complete fracture of both major bones--tibia and fibula--of his lower left leg in the 2005 Florida game. 

Picture credit to http://www.tyroneprothro.com/

Sitting in the stadium while watching the majority of the Florida fans cheering and celebrating the injury with the Gator Chomp while our beloved Prothro was carted off the field is a memory that will be seared in my mind forever and created a grudge that may never be forgiven. 

[If you are on a mobil device and cannot see the video of Prothro and "The Catch", just click this link due to IT issues: http://youtu.be/Y7DSmFvDoYk ]

In all fairness, Bama fans retaliated in a classless way when we beat the Florida Gators and their beloved Tim Tebow in the 2009 SEC Championship game by replacing "Hey Gators!" with "Hey Tebow" in our Rammer Jammer victory chant as he shed, ahem, a few tears on the sideline.

I admit to thoroughly enjoying loudly lending my voice to this taunting chant in the Georgia dome that year, but in my defense, I spent my entire college career watching Alabama lose most games in its fall from grace as a historical football powerhouse. So when, as a graduate student, we finally started playing like the Bear himself was smiling down on us from Heaven, I completely lost my composure and enjoyed ever tear that fell from Tebow's Heisman-winning face. 

On a side note, I now realize that Tim Tebow is an incredible man and I have nothing but respect for him. Seeing a football player openly praise God in this era of dog-fighting and domestic violence in elevators is a breath of fresh air. I wish him all the best in his career as a football commentator and genuinely have enjoyed watching him this season on the SEC Network (didn't he look good in that houndstooth hat when he picked Bama to win last Saturday? But I digress...).

**Alright non-football fans, pick back up HERE:**

So, after receiving good news from my LLMD and having a relatively herx-free treatment week, I was elated that my health is improving and looking forward to finally getting out of the house and going to a a great football game with a strong tradition of rivalry. In the South football games are social affairs--we get dressed up, tailgate in tents or at our favorite bars from college, and see just about everyone we know, including friends I have not seen in years. Having Lyme puts a stop to any form of social life, so between the game and getting to see friends, I was ready to feel "normal" for the first time in as long as I can remember. I had been feeling so relatively well all week that I just knew I would be able to participate in all the fun (in a Lyme-responsible way, but still) without having to use an excessive amount of certain medications to do so.

This along with the fact that I had convinced myself my herxing from now on would be hard but manageable led to one of the biggest pity-parties I have thrown myself thus far in this journey through treatment. This was one of those mind-numbing, being tortured from the inside out kind of herxes that just would not quit. I was miserable. I was angry.

My anger, for the first time in almost a year, was turned towards God. "WHY!" I screamed over and over again. "Why are you punishing me?" I was so mad at Him for giving me this disease, for all of the things Lyme has stolen from me, for broken relationships due to my health, for the loss of my 20's, for living 28 years with these evil bugs and parasites living inside of me and wreaking havoc on my mind, body, and spirit.

In my anger and confusion I even asked my boyfriend what I had done that caused God to punish me so. When I am in my right mind I know the following to be true: I do not believe in a God full of wrath--I believe in a God of love; a God whose Son suffered and died on the cross to forgive our sins. A God of beauty and warmth. A God of creation. A God that is good. A God that heals. And a God that has healed me--mind, body, and soul.

But this weekend I had forgotten that God. I was angry with the "punishment" He had given me. Babesiosis, one of my co-infections, is one of the plagues that God sent to the evil Pharaoh. In my Lyme-rage tinted lenses, He had sent this plague to me. To punish me. To torture me.

Just so you know, I do not think that God 'gave' me the diseases I have. I do think they are evil. But that is for another time, another post...

So, looking back to the first sentence...I did not even remember the advice of listening to Christian-based music at the time of this torturous herx, anger, and self-pity. But my sister did send me to a link to a song that was written about a girl fighting Lyme.

I listened to it. And listened to it again. And again. I cried as I listened to the words. I cried for the loss of a regular life. I cried for all those suffering from this disease. I cried for all the lives needlessly lost. 

And I cried because God is healing me from this disease. I cried tears of joy as I realized it truly is not over yet--I can keep on fighting.

The tears were cathartic and calmed me down. My anger subsided. I awoke the next morning and I felt relatively good. The herx had run its course and I prayed to God for forgiveness for my anger, apologizing for blaming Him for my illness. 

The purpose of this long-winded, rambling and at times random blog post was to share this song with you. Give it a listen. And, when you are herxing and emotionally hurting, listen again. Have faith, for it is not over yet.

"Oh, to everyone who's hit their limit, it's not over yet, it's not over yet, and even when you think you're finished, it's not over yet, it's not over yet. Keep on fighting, out of the dark and into the light (it's not over), hope is rising, never give in, never give up, it's not over yet"

Listen Here by Clicking 'Play' (and if you cannot see the video just click on this link to listen: http://youtu.be/maSQ3cgvta0)

 

Be sure to watch this quick video of the band talking about the song that they wrote for their youngest sister and her battle with Lyme Disease: http://youtu.be/xaSM1G37yhU

Check out the lyrics by clicking the blue words: For KING & COUNTRY - It's Not Over Yet Lyrics | MetroLyrics 

And for those who were wondering...the game was incredible. I was able to watch Bama throw it down the field in HD from my couch like the team never has in my lifetime. It was an exciting game, both teams played really well, and we walked away with an impressive win. Although it has been years since I've been well enough to attend a game, I look forward to potentially going to one later this season. I am staying positive and know that with God's help I will continue to get well and will one day step back into Bryant-Denny stadium knowing that for me, it will be a huge win, regardless of the outcome of the game. And...I might even feel a little normal. 

Edited:

Sorry for all the IT issues. I'm not sure why the videos do not show up on mobile devices (it just shows up as a huge blank space), so I have just put the links on there. Also, to avoid any confusion, my pity party was based on a lifetime of having lyme disease and the effects of a herxheimer reaction, not simply missing a football game. I focused so much on the game to show how, when you have Lyme, sometimes being able to go or do the simplest things are HUGE.

I hope that you love the song and find it helpful, no matter what battle you are fighting.

love and healing,
S

ps-
If you enjoyed this article or any of my other blog posts (most of which focus more on the literal aspects of lyme disease), help a lymie out and share this blog :)

My Personal Lyme Story: The Fight for my Life

Sarah Israel

Contributing Writer

Friday, Jan 10,2014

PC: Erin Zimmerman Photography \ MUA: Morgan King Makeup \ Wardrobe: Siren's at the Beach (Santa Rosa Beach) \ Styling: Rachel K of The Southern Atelier

Last year, after being sick for over 10 years, I began sharing about my disease. I am an incredibly private person and until last May, I only gave specifics of my illnesses to those closest to me. I did it to protect myself, build barriers, so that I would not appear weak. But mostly, I now believe I did it because of my pride.

I have always taken very good care of my physical-self, working out very hard and eating healthy. Having people know that I was 'sick' was embarrassing to me. Plus, many of my diagnoses and the treatments that come with them are topics that do not belong in civilized conversation, especially with my male friends. It was never something I was comfortable sharing.

Every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors’ best efforts. Finally, in June of 2012, I was diagnosed in DC by one of the leading Lyme Literate Medical Doctors (LLMD), as having Late Stage Chronic Lyme Disease and several co-infections, including Babesiosis and Bartonella.

All of the diseases I had been diagnosed with through-out my lifetime were caused by Chronic Late Stage Lyme Disease as well as it’s co-infections, which are often worse than the Lyme itself. I, along with most Chronic Lyme patients, have several co-infections, but I will only cover the two worst ones I have. The first, and most difficult to treat is Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms (called “Malaria at it’s worst”). The second major co-infection I have is Bartonella. “Bartonella henselae is the causative agent of the notorious cat-scratch fever, endocarditis, and several other serious diseases in humans. It is not uncommon for patients to contract encephalopathy.”http://www.envita.com/lyme-disease/chronic-lyme-disease-coinfection-bartonella-causing-more-chronic-fatigue-problems#sthash.054HxyVR.dpuf  

This diagnosis of Late Stage Chronic Lyme Disease (CLD) was like an umbrella--it covered every single illness I had ever been diagnosed with (see list below), because those illnesses are all symptoms of CLD. CLD is known as "The Great Imitator" for mimicking over 300 diseases such as MS, ALS, Parkinson's, Alzheimer's and Rheumatoid Arthritis, to name a few. My sister, Julia, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2 and we have recently learned that her JRA was actually caused by CLD that we both contracted in vitro. Click here to read her story:http://whenlifehandsyoulyme.blogspot.com/2013/08/guest-blog-lifelong-battle-with-jra-lyme.html

Here is a list of the diagnoses I received over my lifetime that were caused by CLD:

Malignant Brain Tumor
Mononeuritis Multiplex
Neuroborreliosis
Fibromyalgia
Idiopathic Hypersomnia
Mitral Valve Prolapse
Dysautonomia
Hypothyroidism/Hyperthyroidism
Post Traumatic Stress Disorder
Fibrocystic Breast Disorder
Complex Ovarian Cysts
Endometriosis
2 Abdominal Hernias
Vestibulitis
Interstitial Cystitis
Pelvic Floor Muscle Dysfunction (High Tone, Rated: Severe)
Pelvic Congestion
Tumors in Pelvic Floor
Appendix Stones
Kidney Stones
Arthritis: Left SI joint and Left Knee
Narrowing of both SI Joints
Abnormality in Cervical Spine
Coccydynia
Anxiety/Depression
Non-Epileptic Seizures
Pain Induced Panic Attacks
Severe Muscle Spasms
Acute Paralysis
Speech Paralysis
Symptoms of Multiple Sclerosis
Symptoms of Parkinson’s Disease

Relieved that I now had a reason to why I was not getting any better from previous years of treatment and all three pelvic surgeries, I began telling my local doctors the 'good news.' For me, being diagnosed with Lyme, something treatable, was a blessing. I had been facing a lifetime of sickness with doctors who had either given up on me or told me we had tried everything possible with no success. We all thought I would be severely sick the rest of my life and never truly get any answers. I was advised to have my eggs frozen, as my reproductive system would eventually fail. I knew that treatment for CLD would be grueling, but it was much more favorable to go through years of torturous treatment, put it into remission, and move on with my life than to live a life of chronic illness, wondering why I would never get well.

I quickly learned that CLD carries many negative connotations and many are extremely skeptical. I had some doctors tell me that it does not exist, others that it does not exist in the South (although research has proven otherwise). I was written off by most people, some friends telling others that my disease was not a big deal and I was just being dramatic and craving attention.

I became very isolated, partly due to the heartbreaking reaction of others to my diagnosis but mostly due to the nature of the treatment. The protocol to treat CLD is lengthy and actually makes you much worse before you get better. My life was filled with complete darkness and depression, I could barely get out of bed to go to the bathroom. I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain. I would have seizures, pass kidney stones, and go in and out of consciousness all in one day.

This time was truly the darkest days of my life, I was hopeless. My brain was so foggy that I could not think straight, much less walk straight. My short-term memory was shot. I was beginning to wonder if I was going crazy. I was desperate and had to quit treatment for a few months, which was devastating given the length of time it was going to take to go into remission to begin with. It turned out my body could not handle this phase of treatment and I was having severe reactions. I was having a massive healing crisis; the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released into your system, and if the amount of toxins gets too high, it can wreak havoc on your body and even lead to death.

I slowly came back into the light after putting the treatment on hold. I started seeing an Ayuverdic specialist here in Homewood, Denise at Blissful Heights. I got my body back in balance and began treatment again and this time I had learned my lesson. I became obsessive about detoxing and still consider it my full time job, as it requires total commitment.

May rolled around and I was handling my treatment much better. It also happened to be Lyme Disease Awareness Month. I was re-watching a speech by Real Housewives of Beverly Hills star and former model Yolanda Foster regarding her battle with Lyme, crying with frustration that there are so few advocates for Lyme Disease that have celebrity as a platform (most celebrities with Lyme Disease do not go public with their battle). Then it hit me: instead of continuing to hide this disease from others by virtually disappearing from friends and family, I needed to be an advocate. I did not have a platform to be heard by millions like Yolanda, but I do have facebook and a blog and I, too, can reach people.

I started May off by posting educational information for Lyme Awareness on facebook—tired of my self-imposed silence and wanting to break free of my fear. The love and support I received was completely overwhelming. The South is severely lacking in Lyme advocates, so I was emboldened by the initial response of support to try and fill that roll and joined an amazing organization called the Alabama Lyme Disease Association (https://www.facebook.com/AlabamaLymeDisease). It started off with a few facebook posts and then my blog, which, to my dismay, has been incredibly successful and read by over 12,000 people around the world.

I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have CLD but cannot afford the treatment. The most important thing right now is for people to learn about Lyme disease -  to know that over 300,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and insurance companies will not touch it since the treatment costs are so significant. 

The treatment for CLD is aggressive and lengthy. I am beyond blessed to go to the leading Lyme Literate Medical Doctor, who was formerly one of the top AIDS researchers, so he has a very strong background in Infectious Disease. Treatment makes you significantly more sick before you get better. It is a grueling journey—one that has left me bedridden, unable to think or speak at times, and in a pit of total darkness. Because of how torturous treatment is, along with other factors, such as isolation, the suicide rate in CLD patients is extremely high. Most do not commit suicide because they are depressed—but because it is the only way to escape the physical pain and mental anguish you experience.

Invisible illnesses are hard to understand, and most people's natural reaction is to back away from the unknown. I pray that the people who read this that have their health will gain a better understanding of how to 'handle' it when a person in their life becomes sick...not necessarily with Lyme but with any other disease that you cannot see with the naked eye.

Living with Lyme has taught me so many lessons, and already I am a happier person because of it. I have found a closeness with God that I didn't realize was possible and have completely let go of all my fears. One day a few months ago, I was suffering from a rather gloomy outlook and it seemed as if my treatment would go on forever and it would never end. I was in a very child-like state--feeling so sorry for myself and thinking over and over again that I will never beat this--and while in this state I had an uncontrollable yearning to be held by my father like when I was a child and he would tell me "everything will be okay"...and he seemingly always made things better. I always felt safest that way and when you are a child you truly believe with all of your heart that your parents can indeed make everything better.

I remember lying on the bathroom floor in a ball of pain and crying, rocking back and forth, and screaming "Why God? Why!! I cannot do this. I just need someone to hold me and tell me I will be okay." I suddenly realized that the yearning I felt was not for my father on earth, but for my Heavenly Father. At that moment I felt a tremendous weight lifted off my shoulders and a warmth that calmed me down enough to fall asleep. The next morning I woke up and felt something new deep down in my Soul. It was not a belief that I will get better and I will heal, it was a profound and factual knowledge that I WILL conquer this disease, without a doubt.

I have always felt close to God and prayed in the morning, before meals, and at night. But on that day I felt lifted up so high as that I could see everything from God's perspective. I started to learn how to live with him by my side at all times and share with him everything I do and everything I am going through. My yoga and meditation practices even became spiritual, a time to calm my mind and just listen, and to take the time to thank Him for his healing Grace.

The treatment had caused my small frame to balloon up to 145 lbs, and I could barely look at myself in the mirror. But once I started living my life close to God, the image in the mirror changed. This diseased body of mine is just something my Soul is living in while I am on Earth. My soul is not sick, just the capsule that carries it. I am not saying that I was able to get over my pride overnight, but it did make it much easier to handle. By the way, to show you how crazy the treatment can be, I lost all of the weight in a few months by switching antibiotics and now have lost too much weight (I'm fighting to stay over 100 lbs and lack any muscle tone at all). Random weight gain and weight loss occurs in a lot of Lyme patients, as does severe muscle atrophy.

Before my body put on the brakes and completely quit on me, I was working 60-70 hour work weeks working for my father. He in no way required this of me and even told me to stop working so much, but my overly-compulsive Type A personality would not allow it.

Fast-forward to now: after a lot of hard work and yoga, yoga therapy, ayuverdic therapy, meditation, breathing exercises with a biofeedback machine, etc I have learned to control the beastly Type A overachieving personality and become closer to Type B. This is not something I am doing so that I can get better and get back to work and my old ways, it has been a complete lifestyle change. I have learned to love myself exactly as I am and to not judge my body on what it is going through. I have a greater appreciation of God's creation and even see colors more vividly. I feel so at peace in nature and have a peaceful mind, something that I have never had before. Instead of judging my self-worth based on my accomplishments (I was named Birmingham's top Young Professional and received several community service awards, including MyScoop’s Birmingham’s Top Belle), I have learned to love myself as God made me, not because of what I have achieved but because of the person God created me to be.

I have made a major lifestyle change that will remain with me the rest of my life. I am still the same person--a little too competitive and obsessive at times--but God has found a light in the darkness of this disease. I will never be the same as I was before and thus my life will be so much more fulfilling. This curse has become my blessing and will change the course of my life forever.

God bless you all and please join me in praying for all those infected with Lyme...send them love, support, and healing. A patient's mental state has a lot to do with the success or failure of fighting a disease, so show love and kindness to all you know who are ill. After all, happiness and companionship are far stronger than any painkiller.

Thank you to all of you who have always supported me—my family, my amazing boyfriend and my friends. I am blessed to have such a wonderful group of people who have never given up on me.

May 2015 Update: I was hospitalized last Fall and had to move back in with my parents. My outcome was looking bleak--I had toxic hepatitis from treatment and the doctor told my now-fiance had we waited any longer to come in I could have suffered complete brain damage or even loss of life. I started to wonder if the fight was over and continued to pray to God for miraculous healing. By Christmas of 2014 I was able to function more normally than I can ever remember. 

Chronic Lyme patients with co-infections do not suddenly get better--it is a very slow progress. God performed another miracle on Christmas and started giving me my life back. My specialists were baffled at this sudden and extreme improvement and instead of moving on to remission treatment they chose to forgo any more treatment and told me if I continued my healthy lifestyle and holistic treatments that I could put myself into remission. God went above and beyond again--I had been praying for remission treatment in lieu of the intense regimen I had been on. But our God has no limitations and he showed me I was not dreaming big enough. 

I still do not function normally but most days people who do not know me cannot tell I'm sick--and most days I do not look sick. I've gained 15-20 lbs back and no longer have that yellow/gray palor to my skin. I still have flare-ups but I no longer feel tortured. I go back to my specialist in DC within the next month and would appreciate prayers that I am close to or have found remission. It will still take a year at least for my body to heal from the trauma but I will gladly take that on. 

I'm getting married to the love of my life in Alys Beach (in Santa Rosa Beach, FL) in September and I have been able to start a fashion blog with a new friend who is so amazingly supportive of me. Our blog, The Southern Atelier, has brought so much joy into my life. And Rachel and I are using it as a platform to raise awareness and funds for Lyme Disease in the South. I'm also excited about moving from Birmingham, AL to Fairhope, AL and for the ability to do so.

I will leave you with one last image. This is when I got home from the hospital in late October and the picture on the right is of me and my fiancé a week before Christmas. Much love to you all. If either picture is not loading please click the small square box. 

Here I am doing the #lymediseasechallenge. Please join me and #takeabiteoutoflymedisease. Just post it on your social media using those two hashtags. 

For Additional Information:

http://whenlifehandsyoulyme.blogspot.com/
www.facebook.com/whenlifehandsyoulyme
www.facebook.com/alabamalymedisease
http://www.tiredoflyme.com/

Please follow The Southern Atelier on Facebook and Instagram!