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Life in Lyme Light Posts

Story 22

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How has Lyme Disease affected your life?

Please forgive me for my run-ons and, I have serious Lyme brain!! My name is Jen and I’m 29 years old and I was bit by a tick 6 years ago in my own backyard in Southern California. I had never heard about the dangers of tick bites or about Lyme disease. It was during the recession (2009), that I had the tick bite (and not knowing it would make me sick yet) and for the life of me during those times I could not find a full time job that offered any type of benefits.. I was working two jobs at the time -waitressing and bartending. The recession was extremely hard, every time I took one step forward, it was 4 steps back. I struggled just to keep myself alive during that time and was still stuck living with my parents, including my abusive psychopath father. Several jobs that I had I would show up to work one day and the business would be shut down with no notice. I was constantly seeking security from a job at this point, which was next to impossible.

My 20’s were anything but easy. I take that back, my whole life has been anything but easy if I’m going to be honest. The pain started to get worse and spread to different joints and what I secretly knew all along that I was sick with something my whole life and that it was starting to get worse.. It was 2011 when I started going to the Dr’s because I finally got a decent job with benefits that I could actually afford. It took 3 years of job hunting in the recession, I kid you not. I live in the mountains so it’s a small town feel (where everyone knows your name and when your period is coming) with few jobs open even when the economy is thriving up here. I’m impressed with what I accomplished looking back now knowing just how sick I was even then.

I had chronic bronchitis for 3 months and worked two jobs without a day off for 36 days straight during the holiday season while I was very sick, and then they finally sent me home because I literally sounded and looked like Linda Blair and customers weren’t happy since I was around food and drinks. The cough is still with me today, it comes and goes when it pleases. That’s when the Lyme started to hit me though on top of my EDS which still wasn’t diagnosed yet at this point in time.

You may not believe this but I’ve literally spent my whole life feeling sick and in pain, and not just a little pain. Honestly my first memory is when I was 2, I was standing in the kitchen and I recall pulling out a fork from the open utensil drawer, I remember it was shiny. My father was washing dishes still and putting them away, and as I grabbed the fork I dropped it and watched it hit the kitchen floor. I recall hearing the sound of the fork drop and as it dropped the most horrendous terrifying sound came from my father, he screamed in his high pitched manic tone and his face twisted in such extreme anger and disgust. I tried to run, I recall being terrified as he came after me – it was all so fast, he spanked me over and over again and then he grabbed me hard by my arms and dragged me to the closet. He locked me in the closet with no light for the rest of the day, he let me out a hour before mother came home and bathed and put me in my pajamas, but I don’t recall what happened after that And you may not believe it, because it certainly doesn’t make sense to beat a child for dropping a fork, but this and many incidents like this did often take place in my house..It was never something I did that would ever even come close to constituting the physical abuse the 210 lb man induced on me as a small girl. I was too frightened from the beginning to ever do anything to anger the beast. I survived by remaining extremely passive (a skill I learned from my mother) and received less beatings that way. The beatings happened most often especially after dad had a bad day at work where he felt like his supervisor or some customer did not treat him with respect that he automatically deserved. The last time my father beat me I was 17 and I swore after that he’d never lay a hand on me again! He came home in one of his moods that night, but there was something so sinister about his look. I could tell right when he entered the door that I was in for real trouble. Let me mention his step-father had passed away 3 days prior to this and my father had daddy issues and was abused himself (or so he says, he’s a compulsive liar as well) so it doesn’t surprise me that this triggered him to want to take it out on me yet again. But he didn’t want to just take it out on me, he snapped. He genuinely wanted to kill me that night, and I’m confident if my mother hadn’t clawed him off of me while he was choking me past the point when I was already unconscious on the floor -I wouldn’t be here today. When he put his hands around my throat I locked eyes with my father for just a moment and his eyes were fully dilated and I could not see his pupils at all, it was as if his eyes had gone black,  he was smiling as he was choking me and I knew one thing for sure- this man was not my father.

See for some reason he wouldn’t raise a hand against my mother, only me. He was a shorter man- about 5’7”, he grew up with a definite little man syndrome and talked endlessly about how he would kill these fictional bad guys in different fantastical scenarios where he’s always the hero of course because he’s so smart and tough and as he experimented with different personalities and clothes to make him look like a tough guy- first he tried cowboy  with lots of the real outfits and expensive dusters, still looked silly on a short chubby man. Then he went for biker, he saw tv shows about biker gangs and he wanted to be cool like them, so he wanted to be in a biker gang and tried to get into the Vagos for a very long time.. This isn’t just a man going through midlife crisis, this is a psychopath who simply wears many pleasing masks.. He would abuse our pets and knock out their teeth when they disobeyed him with a wrench to teach the dog who was master. These horrors and misdoings of my father are really just a small taste, one day I’ll write a book dedicated just to him as a thank you for all he’s done for me…but that’s for another day. You could say I was born into a world of pain. As a very young child I used to come home in tears everyday from the pain all the way up through middle school, my father was an abusive man and didn’t want me going to the Dr.’s and started to beat me when I complained of pain or stomach issues or cried in front of him at all. Crying was a huge trigger for my father to beat me. He enjoyed beating me in general, but crying of pain or of sickness always constituted a beating in his eyes as well because I was faking. I’m not talking a spanking with a belt type of beating. I’m talking fists and punching, hitting, kicking, and spitting, he loved to spit. He told me over and over again that I was making it up for attention. My father is a sick evil twisted man that would later be diagnosed as a psychopath, bipolar, and a schizophrenic (that last one’s due to the meth) and he truly is all that and more.

Needless to say, with a father like that I didn’t get the help I should have. I also learned how to shut up and deal with the pain in order to survive in my house, because he literally would beat me, and I mean beat me if I showed any weakness in front of him, I had constant migraines, stomach issues, and troubles swallowing or keeping food down starting at a very early age. They took me into a doctor in second grade for my weight because they suspected a thyroid issue, I was only 20 lbs. at the time, and the Doctor said I was fine and that little girls just tend to not eat a lot and that the pain was just growing pains and the fact that I couldn’t keep down vegetables or fruit since I was a baby was of no concern to him, and he said I seemed perfectly healthy so to let me continue on my diet and not to worry about the fruits and vegetables because all my blood came back as healthy and good minerals, except of course low on Iron. My parents were satisfied with those answers. My whole life I saw no other option for survival, but to keep it all in and to stay passive to not disturb the angry beast that was my father.

I got down to 86 lbs. when I was 17 because of the stomach issues and pain. I had another very long period where I was just simply not able to keep food down again or eat at all. The pain, the migraines, and oh dear god the stomach issues got worse. I was still dismissed until 2011 when I started to complain about waking up every night because my arms were popping out of socket in my sleep. They were actually dislocating. They still do, every day and every night. My joints have been dislocating since I was 2, all of them. CPS was called a few times due to the dislocations and bruises when my parents brought me into the ER a few times but after the second time one of the Dr’s told them I was just double jointed and taught them how to put my shoulder back into place. There was no more need for Dr visits for dislocations or anything after that, dad didn’t want to be caught after all for the actual abuse that was going on.

It was forbidden for me to go to both Dr.’s and Dentists my whole life. Well it was forbidden for me to almost go anywhere, he loved that control and keeping me close. My mother had to sneak me out a few times because by high school I was getting chronic bronchitis several times a year like clockwork, I developed asthma in highschool, and walking pneumonia as well. I was always sick and never allowed to go to the Dr.’s or to get medicine. If dad found out I went to the Dr.’s and had medicine, he would steal it, he loved inhalers and steroids the most. He simply didn’t care that I was sick or had asthma myself, he took what he wanted, why would he care about my health when he so actively participated in trying to destroy it??

Finally, in late 2011 my previous Dr. diagnosed me with Ehlers-Danlos Syndrome due to me describing my chronic shoulder dislocations in my sleep. He did the Beighton scale on me- and I scored 8 out of 9. I felt relieved at first until I went home and looked up the disease. I knew then that I was never going to be out of pain. After years of trying to make any headway on seeing an EDS specialist and getting literally nowhere I was also finally tested for Lyme Disease (which I didn’t know I was being tested for) and showed up positive on both tests. I’m grateful that I found out finally, but now I’m in the Late Stage.

I have had Lyme Disease for 6 years now without treatment. I did the standard 28 day Doxycycline treatment just this last November, but showed no improvement, only more degradation from both diseases. My Doctor doesn’t know how to diagnose Lyme officially since she’s never done it as she states (I think she’s just scared or ignorant or just dismissing me again) and I cannot receive anymore treatment from her for Lyme or else she’d risk losing her medical license.

My next step is Infectious Disease to see if they’re allowed to treat my Lyme and my Bartonella (I believe that’s what I saw on the paper, I need to find it…) Co-Infection. An answer my Dr. could not give me, so I don’t know what to expect. The thing that really makes this a bad combo is that I already had one auto-immune disease that’s attacking literally all my joints and organs, now I have another disease doing the same exact thing and then some… except it is bacteria that’s determined to live and breed. Did I mention Lyme has a 100% fatality rate when left untreated? Let me repeat that… Lyme has a 100% fatality rate when left untreated.

Unfortunately, the CDC does not recognize Chronic Lyme and therefore does not approve treatment of such individuals for their disease. Late stage Lyme Disease resembles Cancer at this stage, let me describe how- My hair’s falling out, and I don’t mean a little bit, I mean chunks and bald spots okay, it’s so not ideal for this 29 year old, and I can’t eat, I’m in pain ALL the time and I could only measure it by degrees of HELL now, no scale of 1-10 will ever suffice to describe my level of pain that I endure daily, my version of lvl 2 now a days is the equivalent to the feeling of a broken foot  I’ve surpassed normal people’s measurements of pain years ago. The combination of 6-20 dislocations in an average day and night (in case you’re wondering- those hurt just as bad as breaking a bone, and it hurts dislocating it and  then putting it back in its’ socket also hurts just as bad- but has to be done) I describe the pain of a dislocation like slamming a metal car door on your hand… you just have to get that hand out of the door- you can’t think about anything else because the pain is so intense it’s blinding, instinct takes over—this is what it’s like to dislocate a joint. Then with seizures and chronic extreme flu like symptoms and being unable to eat truly is hell, I can feel myself dying and am given no help by the Dr’s I’m holding my hands out to.. My last Dr.’s visit just last week included me begging my Dr. to please not let me die at age 29 and to get me to someone that can treat my Lyme disease. The truth is, she’s done all she can do for me, according to the CDC.

There is research proving active Lyme exists in the dead brain cells of Alzheimer’s, Dementia, Parkinson’s, ALS, and MS sufferers. Unfortunately that Dr.’s funding for Lyme research was promptly pulled by the CDC and American government. He was just too efficient. The CDC was forced to change their initial projection (which is what chooses the amount of funding that would go to said disease of course, which is why Lyme diagnosis has such strict criteria to keep that number down as low as possible, just a numbers game to let you in on why they do it) of 30,000 to 300,000 and admits that they believe it to be much much HIGHER than that projected number as well. This already means Lyme blows AIDS and Cancer out of the water as far as people being diagnosed with it, and yet I had never heard of it until I was diagnosed in 2015?? and maybe you haven’t heard that Lyme’s an epidemic now either.

There’s a few things I want to say in case one day my autopsy reads death by cardiac arrest or stroke because the coroner will never put down Lyme. I, just like so many others, was dismissed wrongfully over and over again. I have lost count how many times I’ve gone to Dr.’s and they simply look at me and see a young woman with no visible physical ailments- so if she’s complaining it must be in her head, Does this ideology sound familiar to you? Sounds like what was unjustly done to many woman in the 1940’s and 1950’s.

As a society we have not let go some of our oldest bias beliefs! Dr.’s are not above this mentality, on the contrary. Dr.’s are just as influenced as anyone else. So, what happens when you’re a young woman that has multiple serious illnesses in America? You get dismissed over and over again until you’re so sick you’re truly disabled and need help to go to the bathroom or to brush your hair. You dislocate while you breathe and you faint and seizure, you’re unable to eat and your heart feels like liquid fire is pumping into it and your veins and oh so many more awful symptoms you could list off… but it will almost always first be misdiagnosed as depression or fibromyalgia… maybe over and over again. Even after each test shows something abnormal or you test positive for Lyme. That Dr. still sees just a normal young girl sitting in front of her, but she never actually listens or even encourages the girl to tell the her wants wrong- she sighs each time and says we don’t have time for all of your problems.. Even after I rack up diagnosis after diagnosis proving that I’m not a drug seeker or hypochondriac.

Things remain the same. They may be able to read my chart, but they simply refuse to look up what any of my diseases are. Therefore all my diseases remain irrelevant to them and it’s still a clear diagnosis of depression or fibromyalgia. I’ve never worked a job where it was acceptable when a customer asked an off the wall question that I didn’t know the answer to (which happened at every job at some point, sometimes a lot) was it okay to leave the customer hanging with no answers. That meant I had to go find answers.

So tell me if employees who get paid minimum wage are expected to do this for their customers, those customers including Doctors because they are customers too -meaning they have this expectation of us when we serve them at our jobs, but a Dr. that makes $100 a hour or more, can’t turn on their computer screen and type the name of any of my diseases to help save my life?

This is oh so concerning, seeing how they’re meant to save our lives and serve us, but instead we go in there and simply let them tell us what they think is really wrong with no sufficient testing or proof.. I’ve fought for myself and for answers for years now. You become your own advocate when you become chronically ill, but it’s hard to constantly fight for your life and beg Dr.’s for help and always leave empty handed, it gets harder the more sick I get, day by day, while they wait in their clean offices and I seizure at home and continue to deteriorate from both my diseases. I am hoping to get treatment for my Lyme so that I may one day live again. Because I assure you, this 29 year old has yet to live at all-don’t you think??- and deserves a shot at some happiness.

I have had Lyme for 6 years now which has given it more than sufficient time to attack my heart and brain now. I am well into Late Stage at this point. I was born with EDS and suffered because of it my whole life but did not get diagnosed until 2011. I’ve survived an abusive father and the recession, all while being sick. I will not go out without kicking and screaming and making a huge fuss while I’m at it! I’ll tell you that!!! There is no justice to Lyme because like so many other epidemics before, the CDC has to keep it hush hush and lie about the truth behind Lyme and again the proof that it causes Parkinson’s, ALS, MS, Alzheimer’s, and Dementia Why? Because we love repeating history’s mistakes!! It’s our favorite!

One Dr released his findings- he had been researching Lyme recently and found in all the  Parkinson’s brains he autopsied in the past 5 years not one of them didn’t have Lyme disease in their brain tissue. This is again not the first time this research has been found regarding Lyme.The real sick thing is the CDC and government have known since the early 1900’s and even had a vaccine for it but decided against it for humans due to unwanted side effects. There is still a Lyme vaccine available for dogs though! Now many people like myself will be flooding dr.’s offices with pages full of problems and each Dr may just have to spend more than 15 minutes with their sick patients to actually figure out what’s wrong-oh no, they won’t meet their quota which means they get paid a lot less. So the answer is the Dr. doesn’t have time for difficult patients- patients that are actually sick.. I strongly believe I should be able to sue every doctor that turned me away and refused to listen to all my symptoms and flat out refused to help me with my pain just because I’m a young woman. I know for a fact I would not have Late Stage Lyme if only they had listened and helped me like they’re supposed to, instead of labeling me into their already set up bias diagnosis of young female with anxiety or depression, the “hysterical” diagnosis as I call it- they’re telling you it’s in your head. But if only one Dr. had listened to me and let me get through my whole list of symptoms just once, maybe if they were listening for once then maybe instead of soiling myself almost daily I would be in a wedding gown instead, walking down the aisle to marry the love of my life, William. I should be able to sue all the Dr.’s that refused to treat me for pain all because I was too young for them to believe I was in pain. I should be able to work and make a decent living for myself, instead I’m bedridden seiziuring and drooling and struggling to read, talk, or remember my own brother’s name for half a day and become pretty much like a Dementia patient with my memory at this point which makes me feel 90 not 29! I shouldn’t be balding and starving to death because my own body won’t let me eat. I shouldn’t be sentenced to this hell with no light at the end of the tunnel because Dr.’s didn’t think I looked sick enough or old enough for their liking to treat for an illness.

My family and loved ones should be able to sue for malpractice if I die from Lyme, and it would be Lyme that killed me, if they refuse to treat me. They won’t be able to sue for malpractice, the Dr. is protected of course, because CDC says they cannot treat Chronic Lyme because it does and doesn’t exist maybe, go to their website and read the ridiculousness that is there for Lyme… if you look at their site, they discuss stages of Lyme and if it lasts for years untreated which is how you hit (some hit it before a year) Late Stage, that would make it chronic in it’s own right.. They even state that more abrasive antibiotics should be used intravenously. The catch that they have put in there is that they believe if the first round of oral antibiotics doesn’t work then it’s not Lyme. There’s no scientific formula for Late Stage Lyme and how long it takes to kill the bacteria after it’s been building a colony in your body for 6 years. The way they kill it is similar again to what Cancer patients go through, they do chemotherapy and for Chronic Lyme it’s years of different antibiotics on and off to make sure you kill all the clever Lyme, because it lies dormant and sleeps where you can’t find it. . All this information is there for the CDC to take into consideration from scientists… wonder why they’re not interested in Chronic Lyme?? It’s always that one magical word. Money.

I blame the CDC for this epidemic- and trust me it’s become an epidemic now, for all the lies surrounding Lyme and once again for money and greed. I blame the Dr’s for condemning me and others like myself to live in hell with no help because we’re not worth helping! We’re new and scary, they rather wash their hands of us! Where’s their Hippocratic Oath now? I know it’s been broken by my Dr.’s! I have begged for years for help, and was simply turned away and even shamed at the same time. How has that not directly lead to my demise? I would like to hear how any of my Dr.’s could defend dismissing my serious symptoms like constant fainting and not being able to eat for months, and especially dislocating all my joints multiple times and day and while I sleep! Must be nice to play god and make quick health diagnosis in 5-10 mins of hearing the patient and never swaying from the first diagnosis- because you’re a genius, and you can’t be wrong- and suffer no consequences if you’re wrong anyways, it’s no skin of the Dr.’s back. That’s right, they’re saved because they listened to you list a few of the symptoms. They don’t have time and can’t be expected to listen to you for more than 30 minutes about your different type of symptoms, other patients are waiting and they’re overbooked anyways to get the right amount of money. It’s really a shame that it’s set up for failure on the Dr.’s end, they could never give decent care to their patients in such short amount of time even if they wanted to, and most don’t seem like they want to at all. Doctors are stuck on always misdiagnosing people when they hear these words “pain, fatigue, loss of appetite, loss of sex drive, loss of feeling in your hands and feet, fainting, almost fainting when standing, not have a bowel movement for weeks, hallucinations, ringing in the ears, seizures”… but wait, they don’t let you get that far down the list, and you have so much more… they only heard pain and fatigue and somehow they think you’re depressed now too, because you sure don’t sound chipper as you’re trying to go through the list that she stopped listening too after the first two symptoms and only acknowledges those. I kid you not, my Dr will only address the first one or two things that comes out of my mouth each visit and will literally tell me we can not go through my list. I’ve never stopped bringing my list and attempting to try to get each problem addressed… she’s stuck to what she said about not being able to ever go through the list.

It’s maddening being sick to the point where you feel your body dying and your Dr. won’t give you anymore time than the 9 year old that came in for a vaccine shot. All chronically ill patients fail to get appropriate care from the medical system. Doctors view us as too hard or difficult to deal with because they don’t know our diseases, there needs to be more educated doctors and specialists for these chronic illness patients. Dr.’s are letting chronically ill patients fall through the cracks, Something radical needs to happen now in order to save many lives!!

What inspires you?

It definitely has to be art. I believe there is a reason some of the best artists were considered crazy or doomed to suffer, perhaps for these sufferer’s the only way to capture their pain, their frustrations, or their dreams and relate to society was through their art. Perhaps the only freedom they had was their art, because there are no restrictions on art, no rules you have to follow, you can just create. I plan to continue to dream through my artwork as well as push myself to get better! I am also greatly inspired by the member’s posts in the support groups and the amount of information and support people give one another.

“To live is to suffer, to survive is to find some meaning in the suffering.”- Friedrich Nietzsche

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Story 21

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

“How are you feeling?” Knitted brows narrow with what is probably genuine concern, but feels like pity. Exhausted. Hysterical. In pain all the time. Hopeless. Suicidal. “I’m okay.” The tension this familiar stranger expels is palpable, her anticipation that I might say something less than pretty draining like the air of a flyaway balloon; which in a matter of seconds is what she gets to do. Fly away, free from the woes of a chronically ill somebody.

Growing up in a quaint community coupled with a history in the nonprofit sector, has branded me with the infamy of big-time illness in a small time town. Should I emerge from my cave for an outing to the local natural foods store, an interaction such as described above will be inevitable. Feeling about as inconspicuous as a dog walking on her hind legs, I get through the interaction. If I were being honest, though, I would punctuate this conversation with unflattering grimaces, tears and the admission that this lady’s perfume is killing my liver. But I don’t. Why not?

From the most practical of standpoints, the answer is that I just don’t have the energy. A reassuring, if not plastered smile and nod, is often the easiest of uneasy methods to get through this. And that. I’m getting through my life, not living it. I’m existing in what feels like a parallel universe while those my age, my peers and forgotten friends are living. But I just don’t have the energy to live.

Societal and cultural expectations too play a significant role in my ironic attempts to soothe the healthy. The symbol of a gracious, beautifully broken tired but determined sick person is just that, a doctored fairytale. She does not exist in the real world of ugly that is chronic illness. Yet the mass population is unaware of this and therefore believes not only in her, but that I should be her; that I should sustain myself on Hallmark colloquialisms and spout pearls of wisdom in the face of adversity.

Don’t count on it. Being ill is a blemish society attempts to conceal on multiple layers. Political, industrial, medical, recreational and relational boundaries for how we may be sick are exclusionary and not to mention, ridiculous. A paradigm of denial, encapsulating not only Lyme disease, but also those of us with chronic illness as a population, makes us wrong. Demonstrate anger about the injustice of it all, and you are not being sick in a socially appropriate way. If I were to bare the naked torment of my being, I would not be concealing my illness in a normative manner that protects the status quo and those who benefit from it. Yet, despite my sociological theorizing and righteous indignation, I won’t hesitate to apply a social Band-Aid for your comfort. Not even for a second. When a man with green eyes and the steady stroll of someone who knows how to savor offers a smile, I want so badly to be the unblemished woman of my imagination. A woman who thrives where she is, blooms by the simplest of moments and can coexist completely with another because the ever-present something by her side is not called pain. It’s called health.

But today, she’s not me. I long to reach out to Green Eyes, to wrap myself in the cloak of stability beckoning me forward; to ask him to ask me “how are you?” And to mean it. Mostly, I crave to wilt, be vulnerable, fall apart into a gazillion shards and without trepidation, for him to reply “Yes.” He would say yes to all things me.

To follow her journey, visit this Lyme warrior’s Facebook page.

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Story 20

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How has Lyme Disease affected your life?

There are Two Tick’s that invaded my body, my mind, my health and my existance. Two separate Lyme Disease diagnosis flowing through my  blood. Many Spiroquetes/Parasites invading my Spirit, turning my Soul into a Ghost and sucking my essence…

I learned how to second guess myself. I began judging myself as others may perceive me. I began shaming me. I let hate in. I chose disease as a way of life. I began defending Lyme Disease as my reality. I began to question non believers and non educated persons of Lyme Disease. I see only my comrades in Lyme Literate people. I shelter my heart in places you can’t touch and away from non believers. I only find interests in my small world of Lyme Disease in constant learning. I am critical of Doctors, Healthcare providers, and Healers who band together in ignorance, I have lost friends, my life, my knowledge, my serenity, my laugh, my passions, my drive, my purpose, my trust, my eyes, my ears, my smell, my touch, my instincts, my intuitive, my drive and my world.

I am paralyzed in thought, movement, peace, love, trust, faith and hope.

Peace and Serenity I yearn for, but can not afford.

I feel a shift now. I feel God’s grace and love. I have been on my knees more in my life than all of my Catholic training and beyond. A trust is creaking my closed door, that was once shut. A renewed faith is lifting my heart. Today, I feel my lips curve upward into a smile as I see hope in the near and not the distance. I felt love for the first time last night in ever so long as the words of my son clicked instead of rolling off… “I need you as much as you need me, we are both in this together…” God could not have been more profound in my eyes, ears, life and in my heart at that very moment, I felt that shift.

I will band every ounce of good, emotion, reality, trust, passion, drive, purpose and love possible to get on this train and let go, release, trust and forgive to move forward into a new journey a new life intended.

I have not let this in as I built walls, armies, and a defense no government could infiltrate.
Of myself I cannot do this but the Christ within me can and is performing miracles in my mind, body and affairs here and now. Thank you.

I Am That I Am…
I am a child of God and therefore I do not inherit sickness…
Please God, help us, guide us, strenghten and lift us up as We Lymies need you more than ever.

What inspires you?

My adult children Andrew, Kylene and Brynn, the sun and the moon, colors, flowers, laughter, sadness and joy, peace, serenity love and hate, the smell of a newborn baby, my Mother’s smile, the tops of the mountains, the depths in the sea, the tide and the waves, the moon, the fear of the unknown, laughter and tears, sorrow and pain, Love and Hate, birth and death, reassurance, hate, empathy and compassion, anger and forgiveness, sickness and in health, kneeling and praying, opening my heart and mind, trust, meditating, yoga, rest and sleep, love… Jesus and God.

“Dreams And Dreaming is a possession of the heart.
Stop dreaming the heart ceases.” – Myself 1979

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Story 19

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How has Lyme Disease affected your life?

Hi, I go by Coco. My friends call me Coco Chanel from school. I am a cancer survivor, I like to keep it real, light sad at times if need be. I am a fibro patient at the present time and like to help people with that and survivors of cancers. I hope to keep in touch and have fun online as I am alive and doing well with the good news, I had another cancer scare this past June…1998 to present… out of work, due to a hypertrophied kidney right absent.

What inspires you?

I like to get and give advice of my illnesses. Joke and make things a lil lighter in life.

I can do all things through Christ whom strengthens me.

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Story 18

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I am a mother of 4 kiddos, ranging from 19-6. The oldest has made me a grandmother! I was a social worker until this past January where Lyme has left me bedridden at times and quite limited. I had been sick most of my life, dealing with asthma and allergies as well as some severe anxiety and depression. I had been hospitalized a total of 3 years of my life accumulated. My mother tried to give the most normal life as possible but environmental, physical as well family dysfunction would try my spirit.

My mother now tells me she remembers a rash that looked like a bull’s eye on me was a child, but doctors had passed it off as ringworm. Throughout childhood, I would be on antibiotics, steroids, and many other medications to keep my asthma at bay. I was allergic to animals, smoke, perfumes and dyes, pollen, molds, almost anything outdoors. My guess is my Lyme was kept at bay as I would be medicated periodically with all different types of antibiotics. When I was five I started pulling out my hair due to high anxiety, a disorder called trichotillomania. I would pull out eyelashes, eyebrows and my head hair.

Teenage years:
My parents ended up getting divorced. I started counseling and using drugs. I would engage in crazy behaviors. The once straight A student dropped out of school and ended up in rehab. My behavior was completely out of control. My asthma continued and I would continue to be hospitalized. My knees had also given way at the age of 16. This should have probably been a symptom of Lyme but was dismissed as my lengthy use of prednisone that had supposedly destroyed my ligaments.

My poor choices led me to have 2 babies by the time I was 19. Both pregnancies I had issues. I was still having asthma issues. I worked at restaurants and would get pneumonia breathing issues. I had surgery on both knees, one at 17 and the other at 22. I would continue to take antibiotics and steroids intermittently. I then had a third child at 23. This child was healthy out of the three. All of my relationship choices were pretty terrible and I was incapable of loving myself or respecting myself. I would make many horrible choices and go out and drink and smoke pot to “have fun.”

This would always hurt me and I would again end up in the hospital. I also ended up in the hospital for a few suicide attempts. My parents had finally divorced and my mother decided to remarry. I felt lost, alone and did not feel as I fit in. Eventually all the illness caught up with me, leaving my doctors to tell me I could no longer work in restaurants. I was approved through Vocational rehabilitation to attend college. I was able to get my GED as well. I would go to therapy weekly. As my mother had a new family, my dad had a new girlfriend with young kids. I look back and look at how mentally unstable I was. Lyme and my support system kind of sucked at the time…

20’s:
I now had 3 children and met a man who truly loved me. He would take care of me when I was sick, but of course the sick attract the sick, he was an alcoholic. He would be very loving and raise my 3 kids. The doctors decided to try sinus surgery to help alleviate my asthma symptoms. It helped for a bit. Again, I was on countless antibiotics and steroids. I would have horrible shoulder and back pain but I always just dealt with it, as my breathing issues were worse and I had gone to doctors almost every other week. Every doctor office and staff knew me by name. I hated being the frequent flyer and I knew many of them thought I was a hypochondriac. My husband who relapsed ended up in jail due to drinking while being on probation, and would hang himself on his 31st birthday, leaving me widowed with 3 kids ages 2, 5, and 7.

My physical health of course took a turn for the worse. I would work and go to school full time, and raise the kids. I was always tired but pushed through it. I ended up graduating with honors with my associates and received a full scholarship to a 4 year college. There was a semester at the undergrad school I had to take a leave, again due to my health. I was in a car accident and then also got some sort of infection, it took me weeks to recover which pushed me back a semester. Pain in my back, shoulders, knees, asthma and allergies would continue to have me susceptible to infection. The May before I graduated I got my first migraine that would just not go away. I was put on antibiotics as well as migraine medications. I remember feeling out of it and completely not right. I did graduate with my Bachelor’s and began working with Autistic children, something I was quite good at.

30’s:
I would again meet someone who was not good for me and get pregnant with baby number 4. I had my fourth baby at 31. The pregnancy put me on complete bed rest. I would have preeclampsia, breathing and heart issues. The father did not stay with me and my mother moved in for months taking care of me. The baby ended up with heart and breathing issues when he was born. He ended up being 10 lbs 8oz. due to the prednisone. I was on BP meds, antibiotics and other meds while pregnant. I was fired while on short term disability at my job. I cried when I lost my insurance and then had no income. I used my income tax to live off of, and once I had the baby was able to collect unemployment. Eventually I found another job working with Autistic children and again loved my job but I would still miss a ton of work for being ill. I started having stomach issues, where I felt like I was going to vomit all the time. I would be placed on many prescription anti-acids and of course they did not work.

I met my husband who I am with now. We have dealt with many ups and downs in our marriage. He has taken over the father role of all 4 of my kids. He is a good provider. I was still getting sick here and there and just didn’t realize my immune system had been so compromised. There was a family history of gall bladder disease so as my stomach issues continued, and my gall bladder removed. My stomach issues continued to where I ended up passing out at work. My doctor stated I needed to be hospitalized and they should run tests. My doctor who hospitalized me ended up giving me a week worth of IV antibiotics. After this, I stayed well for almost 8 months. Than all the symptoms returned and I would continue to get dizzy, vomit, pain and just not feel right.

2011-2012 Moving, Marriage and More sickness:
We moved to Ocean City MD, from Lancaster PA and I would start a new chapter. The summers I always seemed to be healthier and the first summer here I did okay. I started a new job as a clerk at our local health dept. and two weeks later we went to Disneyworld. Halfway through the trip I got seriously ill, not being able to eat, throwing up and the 14 hr ride back. I started seeing a gastronomist who did a colonoscopy and endoscopy. He placed me on more anti-acids as he said I had IBS. I really started watching what I ate and started taking probiotics I did okay and would work, but I missed a lot being ill.

Mark and I got married in May 2012. I ended up becoming very ill again a few days before we left our honeymoon in Jamaica. My primary doctor prescribed me antibiotics and an anti-anxiety. After a few days of antibiotics I started feeling better. Right before the actual wedding, I became so sick I felt like I was going to pass out and nauseas. I had to push the wedding back a half hour. I was able to push through it, but I do remember feeling awful. As the days went on my stomach continued to hurt and I would buy milk of magnesia and take baths daily.

2013 Finally a diagnosis!
I became so ill I ended up once again in the ER. At the time I did not know they tested me for Lyme. I was so excited to get a phone call saying I had a diagnosis! My PCP’s nurse called and stated that they were putting me on doxycycline. My Lyme was at bay while on the antibiotics. It was 3 months now since I was on the antibiotics and at least the brain fog seemed to lessen and the pain was not as bad. My PCP said she could not continue to prescribe antibiotics. Two months later, symptoms returned tenfold. I made an appointment with a Lyme doctor in Lanc, PA where I was originally from as there was none here.

Over this past year I have become more ill and heart issues and high BP. I experience pain throughout my neck, hips, heel, and shoulders. Brain fog, confusion, twitching, and so tired. My breathing recently deteriorated so I am now on prednisone which is a no-no in the Lyme community. In the past few months I tried a glutathione IV and ended up with anaphalaxysis. I would try multiple supplements but I would have allergic reactions. My liver enzymes are high and white blood count is high. I have anaplasma, mycoplasma, h pylori, borrelia and possibly babesia and bartonella. I was recently allergy tested through the Lyme doc and we realized that I am allergic to a ton of food, and many other things which has limited my treatment. I am currently doing the fodmap diet which has helped immensely. I am also taking all gluten, dairy free, casein free, nut free supplements.

I have been on FMLA from my job since January and it killed me at first thinking that I was not worth anything if I am not working. I have learned that is wrong. I realized that I can be a huge impact on my children while I am home, even if it just sitting on the couch. I can be a support to my husband and cheer him on, and I can help others with Lyme. I can advocate for others with Lyme. My immediate coworkers have supported me and did the Lyme Challenge which has brightened my days! I will push forward and I will not remain silent!

What inspires you?

People that do not follow the norm, God, the beach, my family, and art.

“Courage is not having the strength to go on; it is going on when you don’t have the strength.” – Teddy Roosevelt

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Story 17

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Sometimes I feel that I progress forward, and then Lyme pulls me back. It rears its ugly head and reminds me that I will never again be what I once was. I am a psychotherapist, so I’ve never believed in the term “normal,” but after contracting Lyme and living this life, I realize that there IS such a thing. Normal was before Lyme. Normal now has a name.  It used to feel like my ankles were breaking with every step I took. It was hard for me to get up in the mornings (and I”m a morning person), and when I did, I felt I was losing my mind. I couldn’t remember my name at times, and at other times, I couldn’t remember the simple things like turning off the stove, or the name of my child’s teacher. Everything hurt, including my teeth, and I gained 20lbs. in 2 weeks. Of everything, this alarmed me the most.

I went to a doctor who informed me that I was fat, and that I had to exercise and there was no miracle pill for it. I never went back, as I only asked WHY this occurred, not what I could do about it. After seeing many doctors for over 2 years and feeling worse and worse, I finally had one who told me that I had Lyme.

The 30 day cycle of antibiotics was great, and all that 20lbs was once again lost. But a month later, the symptoms came back worse. I now gained 40 lbs. in 4 weeks. I was told I had Fibermyalgia, Lupus, and Rheumatoid arthritis. But the specialists disagreed, and asked me to see an infectious disease doctor. This doctor told me point blank that I had Chronic Lyme. He told me I needed a transfusion that cost $4K since it was a 4 week process. Instead, I looked online and found Steven along with others. I tried his protocol, and it worked for 8 months! I felt great! I did not lose any weight, nor did I gain during this time. But after that 8 months, I started swelling up so bad that I couldn’t see, and I gained another 20 Lbs.

This time, I was referred to a lyme specialist, who I have been seeing for a year now. I still swell, but I’ve lost weight and do not have nearly the amount the pain that I did. I realize that I swell more when the moon is full (weird, right?) and am foggy brained during a week when I only take vitamins rather than antibiotics. I decided that I couldn’t let Lyme get me down – so I’ve gone back to school and am attaining my Doctorate online. It helps keep me focused, and quite frankly, sane. My parents and my kids are supportive and loving, but I do not wish to be someone’s worry or burden. So I always push on, and hope that I am also inspiring my kids that even if they feel knocked down, they can get right back up and push through it. They can lay there for awhile, but cannot wallow in self-pity, as it does nothing positive for anyone.

I’ve gone gluten and soy free, which actually has helped tremendously. I’m starting to enjoy life again, but cannot get to excited or I end up laying in bed for two days. Stress is my number one enemy. I have been told that stress can literally allow the lyme spirochetes to survive and thrive. Living stress free is not realistic, but meditation and yoga helps. Having and needing to learn a new way of life is so different than wanting to learn a new way of life. Sometimes I forget this, and forge ahead. Then BAM, on goes the weight, and the rash on my face, and the fogginess and pain settle in. I’m not a big believer in “everything in moderation” and “easy goes it.” That’s my story. It’s been 5 years now. I can hope that one day I will fly like a butterfly, and find my normal again.

What inspires you?

Inspirations come to me in many forms. I love art and photography, and so IG has given me a way to view things that I might never have before. I love to read and write, and I love school. People are always inspiring to me. I hear my clients tell me their stories (I work in trauma), and I think that I am pretty well off. I love Tedtalks and…. sharks. I love sharks. I went swimming with Sharks in Belize with some friends last year, and it is a memory that I cherish. My father is a Vietnam veteran who has chronic lymphocytic leukemia, a rare form from Agent Orange. Nothing keeps that man down, not even having only 1/2 a calf. He runs every day, and inspires me to keep going. My dogs and my kids are my lifeline. I look at them, spend time with them, and all of a sudden, I know it’s gonna be alright. The concept of love is so much more now, so much more. One other thing inspires me and it might surprise you. Anger. It’s ok to feel anger, but it is how it is used that matters. I use the emotion to turn to positivity. For instance, “I CAN do this – darn it!” So I do.

“Fear does not decide my fate” – Anonymous

“It is what it is” – Anonymous

“Fall down seven times, stand up eight.” – Japanese Proverb

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Story 16

story16_web
© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme Disease took my mind and my body. It made me crumble inside when I was once a healthy young mother with so much ambition and physical strength. I loved to dance, how I loved to dance anywhere and everywhere but the disease took my legs and feet, I am only 28 and now have severe peripheral neuropathy, my feet burn, my legs shoot with pain, standing is sometimes not an option, walking exhausts me. I use a cane and wear braces on my feet. Lyme took my brain too, thinking, talking, and configuring simple thoughts has become a chore. I don’t retain information, I stutter and fumble over my tongue to say words. I lose my train of thought and become confused very easily. I get migraines and headache that last for days, ringing in my ears, stomach problems, aching and stiff joints. I have extreme skin sensitivities, such as to touch, cold/heat, plus I’m prone to acne, rashes, and boils. Aside from the physical affects of Lyme, the emotional toll it takes is debilitating in itself, there is frustration, depression, anxiety, and so much fear. I get frustrated when I can’t clean my house, can’t walk my kids to the park, can’t carry on a conversation or just can’t feel good. The fear I try to push to the back of my mind, will I be able to perform my duties as a mother, will I get to watch them grow, will I be still be alive in a year, will I have to use a wheelchair soon, can I fight another day, and the most terrifying: what if one of my children contract Lyme?

Lyme has become my life, it consumes my body, and my days. I fight each day to get through and to have another day tomorrow, I am not garenteed another but I can do my best to make each one count, to make sure my family knows I love them, to be a friend, to lend advice, to encourage, and to raise awareness.

What inspires you?

My children inspire me, they give light to the darkness and make each day worth living. They are the reason I get out of bed, the reason I push through, and the reason I smile. The patience and support they give their sick mommy is inspiring.

“I am also inspired by the other Lyme sufferers, each story is unique but each goal is the same, to fight, to share, and to love.” – Anonymous

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Story 15

story15_web
© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme has affected my life in so many ways. I was so strong when I got bit by the tick that made me sick. I was on a vacation to my home in Georgia. I was visiting my Aunt Ruby who lived across from my Daddy’s house on family land. I grew up playing in woods there. It’s so beautiful. They’re pine trees you can’t wrap your arms around because they’re so big and different mineral springs with the little fiddle ferns growing beside them. We only walked her driveway the day I got my tick. We all, my husband, son & myself found ticks on us later that night  back at home in Tennessee but I missed 1. I found it on my breast days later and had to get needle to remove because it had died.I was working nights, studying for the Apprentice Test at General Motors my  job for 19 years. I was taking care of my 3 yr old during day before work. I ignored the rash (not a bullseye) on my shoulder and blamed it on cheap detergent I had recently bought. I got a really bad headache that I tried to ignore. I blamed it on all the Algebra I was studying after so many years away from High School. Nothing helped the headache and I very rarely ever had headache before. Headache never went away even for 1 minute. I was so tired. Really bad tired.

On the 9th day I lost control of my bowels when I stood up and knew something was wrong. I drove myself to Ambulatory Clinic and Dr. held me there 5 hours testing everything. She came in and asked “Have you been bit by a tick lately?” and I remembered the tick I had to remove with needle. I tested positive for Lyme and 3 other co-infections. She gave me 5 months of Doxycycline. I felt better on them, but all symptoms came back when I would finish dose. She sent me to Vanderbilt CDC because I was still sick. Dr. at CDC came out to where I was sitting and said, “There is no such thing as Lyme disease in state of Tennessee. I agreed to see you because you said you got your tick in Georgia.” Then she spent remaining time trying to convince me I did not have Lyme. I never went back.

I had to have my right jaw replaced because I was hurting so bad and had a nerve that was pinched and would not stop twitching on face. Surgery didn’t stop pain even though Dr. assured me it would. Have constant ringing in ear that has never stopped. Have vertigo that comes without warning and has made me where I don’t leave house much. I have nerve damage to my Inner Ear. Same nerve also controls vision and memory. I have dealt with all this since year 2000. Still have not found Dr to treat Lyme. It’s illegal in Tennessee for Dr to treat Lyme.

I have since inherited the land in Georgia, on which I got Lyme. It took 6 years and a lot of prayer for me to be able to go there. Now I go and spend the night there when I visit my Father. It bothers me because I don’t ever plan on selling the land. It’s been in our family 100 years. I want to hand it down to my son one day. I am worried about him or 1 of his children getting Lyme in the future and then not being able to find a Dr. or can’t afford treatment.

I can’t give blood to Red Cross anymore because it never leaves your body. I was retired with 19 years from General Motors because I was considered a safety risk. I had vertigo on the assembly line. So thankful I worked for a company that had a Union.

I can’t sleep on some nights because of constant ringing. Had Breast cancer and mastectomy 2 years ago. I blame Lyme since it was not genetic. I have constant nerve pain in back. On other side I changed for the better because I got stronger in faith and know God will help me. He has been my constant friend. I have had people who don’t believe in Lyme Disease. Some family and so called, “friends” I understand things now I didn’t before.

I, by chance, caught a CBS news Sunday Morning News show a few years back where a man retired from CDC on Plum Island. He said in interview (and book he had written) how government had hired a scientist from Germany to contract work on Lyme and other Diseases for possible warfare stuff. They tested on cows in open air corals at the time and first case of Lyme appeared in Lyme, Conn. ACROSS the river from Plum Island. This is why they don’t want to acknowledge it. Also, film “Under our Skin” documentary. The 2 Drs. who did film explained how Drs. who sit on panel and make up rules for other Drs. own the Patent for Lyme Disease even though they still deny there is Lyme. It’s political. It’s aggravating and frustrating. IT’S WRONG. It’s also out of my control. I pray God will turn their hearts and do the right thing.

What inspires you?

My husband & my son.  They have been so good to me.

Sometimes when I am having a bad day with vertigo and can’t get up and do what I want I hear my Mom, who for all her life dealt with breathing problems, say, “One day at a time and sometimes 1 hour or minute at a time” And I will think okay, right now I don’t feel well, but maybe in a minute it will be better.

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Story 14

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How has Lyme Disease affected your life?

Lyme Disease has has shut me down physically. A tiny little bug with such power. I am 55 yrs old and have been fighting this disease for 24 years… And I’m tired. I’m a very loving fun woman with great faith(which has gotten me thru this journey) I have a very strong family and furry dog angel by my side.. Which I wish for everyone fighting this crazy disease. There are not enough words to describe what I go thru on a daily basis I have been in bed for years now..some days I think I’m dying and days I wish I would. Then you get those lil miracle days THAT GIVE YOU HOPE! I have a loving husband(high school sweetheart) and two beautiful daughters(whom have watched and lived this struggle since young girls) and my dog angel whom sits by my side every moment of everyday! This is what gets me thru. Every part of my body has been affected. From brain, heart , lungs, organs removed, stomach, muscles, nerves,soooooo tired,the pain is unbearable(yet they make you fight for pain med) I have been told I’m crazy by more doctors I care to mention. I KNOW WHO I AM! I AM STRONGER(then I ever knew I could be) My faith and family carry me thru this horrible disease! WE NEED TO BE TAKEN SERIOUSLY BEFORE MORE LIVES ARE LOST ON A DISEASE WHICH COULD HAVE A CURE… If yet one person with the answer would be BRAVE and come FOWARD and help us. WE NEED HELP! thank you for listening to my story.

What inspires you?

I am inspired by brave strong people! I am inspired by the human strength. I am inspired by how people with LYME just keep putting one foot in front of the other.. No matter how weak we may feel.. We just keep going in hope of a cure! HOPE FOR A CURE!

“Out of difficulties come miracles.” – Anonymous

“When my precious child, I love you and would never leave you. During your times of trial and suffering, when you see only one set of footprints; it was then that I carried you… faith and hope.” – Anonymous

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Story 13

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How has Lyme Disease affected your life?

Lyme has changed me, and my life drastically. I am no longer able to work, and the financial strain is terrible. I have had to pay hundreds of dollars out of pocket for treatment, and I am still not well.

What inspires you?

The Lyme community inspires me with their compassion, knowledge, and thoughtfulness.
Without them I fear many of us would be lost.

“Spread your wings and fly.
Fly into the storm.
Be determined to survive.
Stay true to your course,
and follow your instincts.

You will make it through the storm.
On sunny shores you will arrive,
tattered, and weary,
but much stronger than you
ever thought you could be.”

-JLS

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