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