About the author and creator of TruthAboutLymeDisease.com
TruthAboutLymeDisease.com Author and Creator, Dana:
It was a dark, night. I was walking up a hill and in the distance I saw what appeared to be a grave yard surround by wrought iron fencing. There were at least 3 "people" that opened the gates and I entered. They led me to a spot, or was it a plot? I looked downward and I was standing at the edge of a pit of fire. The pit was square, it would engulf me head to toe if I were to jump in feet first. Flames shot upward from the pit at me and without anyone speaking a word I knew I had no choice, I had to get into that fire. I didn't feel fear oddly, the fire would be consuming, and it would surely burn. Then just like a scene from a movie, I shot straight up out of bed in a cold sweat, heart thumping. "Oh God," I thought "it was a dream, a nightmare!” Yet, I knew without a doubt something horrible was about to happen in my life, that dream had meaning. Over the next few days the dream weighed heavy on my mind and I thought of everything in my life that had meaning to me, my parents, my husband and son, even my dogs and cats. I never thought of myself though. I would pray I was wrong, that I was taking the dream too seriously. But I couldn't shake the "knowing" that something was coming. I knew the warning was clear, and I clearly understood that fire is hot and it could be a taste of hell. 2 weeks later I "jumped into the pit of fire”.
I never imagined then that everything would completely change and the life I once lived, I would long to have back and that it would become all but a distant memory and that having my health would mean more to me than anything could. There is a saying that a person doesn't pay much attention to their health until it is gone and then you would pay any price to get it back.
Only those who have had their health and lost it, truly understand that the saying "If you have your health you have everything". It is by far the truest statement ever spoken. If you have your health, be thankful every day. In an instant, a second, everything changed beyond my wildest imagination. It would become my only focus from the time I got up until the time I went to bed, day after day, month after month, year after year.
My Healthy Life……
My husband and I met and were friends in high school. After high school we ran into each other and to make a long story short, we married when he was still a teenager, 19, I was a year older. 10 years later, our only child, a son, was 4 years old. Life was good. My husband was working long and hard hours and was making a good living for us. I was a stay at home mom and loved every minute of my life. I jumped out of bed each day without a single thought of my health. We were thrilled to be able to buy our first brand new home so young and soon a new boat. I'd get a new car every time the warranty ran out without fail. I'd never drive a car more than 3 years. We'd take vacations to Hawaii at Thanksgiving every year. We lived a middle class, comfortable, exciting, active life. Soon, we added 3 dogs (along with our 3 cats) to our family. I had been an animal-lover my entire life and this truly made my life complete. Our life was simply beautiful.
If you want to make God laugh, tell Him YOUR plans…….
We had plans like every couple. One day we would travel when our son went off to college. But little did we know that a "thief" was lurking and would change everything in our lives in the years ahead. This thief would take nearly everything from us, health, financial security and everything we had planned and hoped for. Waking up each day to a nightmare of too many symptoms to count. No average human being could comprehend the hell that Lyme is. Décor became boxes of medications and supplements and books on every aspect of health. Life became tolerating each day, no longer looking forward to the day ahead or truly living, every day is a fight to regain health.
Financial struggle and eventual ruin comes with the loss of health. You are putting every dime into treatments, doctors, whatever might work. Your "belongings" mean very little when you are in a fight for your life. All that matters is regaining health, the once “normal” thing that now seemed so far out of reach. Our view of life was shifting, vacations, camping, boating, new cars were meaningless. We were now thankful to be able to make the mortgage payment or to be able to pay the outrageous medicine prices that insurance didn't cover. Vacations now meant going on long trips to "special" doctors and the weekend camping and boating trips and yearly Hawaii vacations would become memories with pictures as proof of a once healthy existence. All long gone, lost to being a prisoner to a body that demanded 'round the clock attention.
Suffering in a world of pain and agony that no human should ever have to experience. Who knew looking forward to making a trip to the grocery store was now what I had to look forward to and was thankful, grateful from the heart if I could manage it? Illness changes you in every way. Everything is about health. I became hyper-aware of every food I would eat, objects I would touch (they might have germs), walking through the grass (because ticks live there) was a daring proposition. The air I breathed, the water I drank, the shampoo I used all carried so many chemicals, they alone could kill a horse. The “health” of everything in my home, the possible bacteria laden carpet to the possible mold hidden in the walls and spores floating out of the air vents. Everything on this planet was a possible hindrance or contributor to my lost health. Hyper-aware, over analytical all while in horrendous pain head to toe and feeling utterly sick and to top it off worried about every penny spent. This would become an average day in my life.
Hindsight is 20/20……..
Looking back, for years all of us had at least some symptoms. Things that most people “blow off” as no big deal or “normal”. Now that I am very well educated about Lyme and every aspect of it and aware of any contributor to the demise of health, it easy to see the answer was so obvious. But we didn't realize something sinister was forming and neither did any doctor. There are hundreds of possible symptoms of Lyme and the combinations that any person may end up with are endless. 2006 is the year that all the pieces of the puzzle would come together, it would take me to deaths door and it would turn our lives upside down, inside out and hurl me into a world I never imagined existed, fighting a disease I had heard of, but hadn't a clue how vicious, virulent and absolutely disabling it truly was.
When or how the infections started, is still a mystery. None of us remember a tick bite or a rash (and many, most don't). Although there is a very real possibility I could have been born with Lyme (although not symptomatic) my mother was bitten and not treated as a child and it could have been passed congenitally or maybe we were infected when we were camping or when we walked our dogs in the tick infested field near our home, or maybe the most common place (for anyone) to be bitten, our own back yard.
We will never know for sure how we were infected or who was infected first. Besides a tick bite, bites from all blood-feeding insects (don't be fooled that the "Deer Tick" is the only carrier of Lyme, all ticks can be carriers) fleas, mosquitoes, congenital and sexual transmission are all possible. We had our share of exposure to fleas/ticks with our pets going years unprotected before Frontline came on the market. I had even pulled ticks off my dogs when I once delayed putting Frontline flea/tick topical on them. We do not live near deer or forests, we live in suburbia.
Symptoms make their appearance one by one......
The 10 year span from 1996-2006 each of us had experienced an illness that Md's could not fully diagnose. The 3 of us saw a total of over 30 Md's in the years to come. Later, I would learn they just did not have the knowledge needed. Md's don't have to take a class on tick borne diseases and if anything, they are taught it is hard to catch and easy to cure. The opposite is true, it is easy to get and very hard to cure. The fact is Lyme is believed to only go into remission. So, during this 10 year span different things popped up, they applied a diagnosis to each symptom, for me, migraine headaches, vertigo and ultimately fibromyalgia. For my husband disk degeneration & chronic fatigue and for my son chronic ear infections and later migraines.
Most mainstream doctors know nothing about tick borne diseases. Lyme was only discovered around 1980. Even had we known for sure we were bitten by a tick at some point, doctors would have never made the connection or believed it could be chronic. They just do not know any more than any other average American regarding Lyme disease. Although, I find it amazing everyone knows about West Nile Virus and if you were anything like me, I was dodging mosquitoes. The media blitz on WNV covered just about every aspect of the hideous virus, but there was no media blitz on the hideous deadly tick borne disease bacteria's lurking in back yard bushes or grass found in every state in this country and around the world.
My precious son gets sick with a “mystery illness”…..
In 1997 at age 7, my son developed a "mystery illness" that would become so severe I was sure he would die. It started as any flu with fever and body aches. When the fever would drop, I'd send him back to school only to have him sent home hours later with a fever again. Weeks passed and we were going to his doctor almost on a daily basis. They did numerous tests including a lumbar puncture and still no diagnosis.
Eventually many doctors were involved in his case and not one of them could figure out what was going on. I kept asking over and over for antibiotics, but they would not prescribe them without a definitive diagnosis. Finally he was so sick he could barely walk, his legs hurt so badly, he was losing weight. I now had no choice but to make my demands clear as crystal to these doctors. I told them I would not leave the office without antibiotics, even though I didn't have a clue as to what was wrong, call it mother's instinct, I knew antibiotics would somehow help. I told them to find the answer or my son was going to die and I know they took me very seriously, as the look on their faces proved they were thinking the same thing. They did finally Rx the antibiotics and looking back the "jump" on antibiotics was an imperative move.
I never stopped fighting for my son. I called those doctors everyday if we weren't already at their office. Finally, I received a call from his primary doctor that they wanted him admitted into the hospital and put on IV antibiotics asap. They said he possibly had a strep infection that had entered his bloodstream, but I couldn't understand that, his strep test was negative. It didn't matter, he was finally getting the attention and the treatment he needed and for that I was thankful and asked no more questions and we admitted him in the hospital within hours of the phone call. Within days he responded to the IV antibiotics, the doctor's showed concern for his heart and did an ultra sound that came back normal and shortly after he was released on oral antibiotics for many weeks. Thankfully he seemed to recover fully. Life went on.
A few years later I ran into his Md and thanked him again for saving my son's life from strep. His response would stay with me for forever, "We never knew what was wrong and we hoped he would respond to IV antibiotics, we knew it was serious". I left puzzled and the pieces wouldn't be put together for years.
Pain the name of the game………..
Over the span of the previous 15 years, I had been in several car accidents. It never failed someone would rear end me at a stop light, again and again and again. These accidents resulted in a non-union commuted (broken in half) collar bone and many bulging disks throughout my spine, neck to lumbar. I was no stranger to pain and I must admit very tough. I am a fast moving, fast talking, type A personality, I wouldn't allow anything to "lay me up", I always pushed through and few could ever guess anything was wrong. I suffered in silence.
Eventually, after many years, the injuries began to heal. The collarbone never healed perfectly and caused a lot of pain. I settled into chronic pain and I was diagnosed with Fibromyalgia, again. I never bought into the Fibro diagnosis. I wanted to know the cause. I suddenly started developing migraines with auras, flashing lights blinding me before the mother of all headaches would settle in with severe nausea for the next 24 hours. I suddenly awoke one New Year's Day to (BPV) vertigo that lasted 3 months solid, many times it was so severe I'd have to crawl on the floor, it was like being on a non-stop roller coaster, my world rocked with dizziness and nausea.
I saw a neurologist in 1998 who ordered a brain MRI, he was concerned about MS. I remember the call to this day about the MRI results. I was told by the neurologist the MRI was "normal". 10 years later this "normal" MRI would come up again. The 1998 MRI was not normal it showed brain lesions (common with Lyme and often misdiagnosed as MS) and I was never originally told anything about the brain lesions. I asked for the MRI report from 1998 in 2008 when I had another brain MRI and that is how I learned about the brain lesions. I was astonished to find out I had brain lesions for at least 10 years. This proved I had Lyme at least since '98.
God knocks on the door of my heart……
In the 90's my brother who was a Christian would come over and watch Joyce Meyer. Annoyed at first, I eventually got hooked watching her with him. She is a TV bible teacher that anyone could relate to and understand and I eventually became a Christian. Joyce has been a part of my daily life, every single day since she first appeared on TV in the mid 90's. I have watched her grow from teaching at small churches to football stadiums filled with people. Her show “Enjoying Everyday Life” is very well known now and so is she. I just never realized that God would arrange using Joyce to save my life as you will see later in my story. When Joyce Meyer's staff learned of this, they printed my story in her magazine in the summer of 2008. Whether you are a Christian or not, as my dad always said, "Into every life a little rain must fall". Dad wasn't kidding. I just didn't know then how severe a storm could get.
Doctors can't find what my husband is sure is killing him…..
Around age 30 my husband started having severe back pain & sciatica which led to his first back surgery. Back problems are thought to be brought on by the bacteria of Lyme, destroying discs and doing damage that we were unaware of. The timing was all very near my sons hospitalization and migraines and vertigo appearing in me. He was thankfully able to go back to work after the surgery, at least for several more years.
Then, in 2003 my husband had a mysterious body-wide pain explosion that was set off by a lumbar puncture at Kaiser. He had not been feeling well for many months leading up to the LP, saying at his worst point he was sure he'd die. He had every test imaginable, but no diagnosis. Ultimately, this extreme pain became unmanageable at home and he was hospitalized for further testing. He was released after 10 days. He had many tests, bone scans, MRI's, blood tests and more showing "nothing wrong". Lyme rarely, if ever, shows up in a lumbar puncture.
Eventually his illiterate Md diagnosed him with Somatoform (physical symptoms, which mimic disease or injury for which there is no obvious reason) basically meaning the symptoms felt real but couldn't be. He was in so much pain he could barely walk and had to use a walker. I felt helpless and knew something was very wrong. I eventually took him away from his HMO to the neurosurgeon that did his first back surgery. I would have done this sooner, but being stuck with an HMO is a nightmare and it was costly. He had a second back surgery. During surgery old fragments of a disk were found and the pain did abate some after surgery. A disc fragmenting is excruciating. Yet, even after surgery, he still felt sick and slept nearly non-stop for the next 2 years. He also endured 2 knee surgeries during this time. Eventually, he developed chronic pain and was diagnosed with Chronic Fatigue Syndrome. His symptoms so disabling, he had to "retire" at 38 years old.
More family members with “mystery” symptoms…..
If one family member has Lyme it is more than likely everyone in the house has been exposed too. Family members have the same exposure risks whether that be camping, gardening, etc. Symptoms for me were coming and going through the years, but remained mostly manageable. Strangely, my older sister started experiencing similar symptoms and she eventually also was diagnosed with Fibromyalgia and if all this weren't enough, her husband had his own unexplained severe illness that had been going on for many, many years, 2 decades. He had seen so many Md's throughout the years all over the country and none could diagnose him. Finally, a Chronic Fatigue specialist diagnosed him with, you guessed it, CFS. Although we didn't live under the same roof, our exposure risks were very much the same starting with having the same mother.
My sister and her husband lived in a nice area that was like a wildlife refuge, deer, turkey and other wildlife roamed right through their yard. Nearly every weekend we'd take our son out to their house to stay and play with his cousin. We had camped and went boating with them often during the “healthy” days. We had common places of exposure from our mom to camping to where she lived.
Toxins fall from the sky over our home.........
In 2005 our county started aerial pesticide sprayings in the name of West Nile Virus. These toxic chemicals were sprayed right over our rooftops. This wasn't "dusting" of crops this was a pesticide dump over thousands upon thousands of homes in our city and they still spray every summer. The planes fly 200 feet right over our rooftops 2-3 nights in a row and they dump their toxic poisons. Anyone with a brain would know this has to be very harmful. I have had a horrible feeling about this from the first time they took to the skies with their pesticides. Within months of the first aerial pesticide sprayings in 2005 I had many, many more "symptoms" appearing that would come and go. Ringing in my ears, insomnia, stomach pain that would wake me up doubled over in pain, heart palpitations. I developed "tennis" elbow and tendinitis in my shoulder for no obvious reason. I easily herniated a disk in my back. Lyme attacks & weakens everything, but my illiterate primary doctor still didn't suggest any disease. My immune system was starting to "crack" and pesticides are a notorious poison for suppressing the immune system. I didn't know anything.....yet. The EPA (Environmental Protection Agency) appeared helpless in the county decisions and warned they did not know how it could affect people in the long term, only acute symptoms were kept on record, if and only if, people reported them. The annual spraying continues to this day and now they upped the ante by using a more toxic organophosphate spray, basically a nerve gas (yes, a nerve gas) that they say is safe because they spray it in “ultra low volume”. I can't imagine what "dose" of nerve gas would be safe.
The storm hits and packs a near death punch.......
The night of Good Friday in 2006 as I was getting ready for bed when out of nowhere, I was stopped dead in my tracks. Suddenly it felt as if someone had buried a hatchet in my left shoulder blade. The pain was crazy and extremely intense. It was an unusual pain, a sinister pain, with indescribable sensations, it was a deep nerve pain. I had never suffered nerve pain, but you know without a doubt what it is when you have it. Suffice it to say, it was absolutely unbelievable pain! It was a deep searing pain & within a week it felt as if that "hatchet" came through my chest and the pain has spread all throughout my chest and upper back. I could barely breathe, let alone talk. I was frantic. I began seeing Md after Md. At first the symptoms had them scrambling to test my heart, but all was normal. Even a full physical for neurological problems turned up nothing.
7 weeks later, still no answers and the pain existed stronger than ever. My chiropractor, being the most sympathetic, thought I had pulled a muscle in my back but I strongly disagreed and knew he was wrong. I warned him and anyone that would listen, it was serious, VERY serious and it had to be stopped. I had been put through many tests by now, blood tests, MRI's, Ultra sounds, CAT scans, all normal. I had a sense of "urgency" in my mind, that someone, anyone, must stop this. I feared the pain spreading for some reason. I was panicked and in excruciating pain with no answers. I had numbness and tingling down my arm into my fingers forming. It mimicked symptoms of heart attack. But to me, it was very unusual and I kept saying it felt like an infection, but wondered how could an infection be localized in my shoulder blade? I was absolutely terrified.
I opened the medicine chest one day, there was a bottle of Cipro. I studied the bottle wondering if I should take one. I worried that doing this might mess up tests and threw the bottle back into the medicine chest. Looking back, had I taken the Cipro what came next might have never happened.
I went to an Md that came highly recommended. He was also positive I had a pulled muscle. I tried to explain that I had done nothing to "pull" a muscle and argued that 7 weeks of this pain not subsiding at all couldn't be a pulled muscle it just was not a pulled muscle. He said it could be nothing else. He said I needed corticosteroid injections. I very hesitantly accepted to do the injections but at the moment he approached with several full syringes on a tray, I had second thoughts about it, I tried to stop him and said "How about using lidocaine only?" Had he done it my way, the rest would have never happened. He said, "You'll be fine" and the needles were in my back before I knew what hit me. He had me follow up with a treadmill test to "make sure" the pain wasn't heart related. 3 days later the treadmill test was scheduled and the shoulder blade pain was absolutely torturous, my chest hurt so much. I was full of anxiety, feeling slowly like I was beginning to die. I didn't think I'd make it through the treadmill test, but I was determined and I too wanted to make sure it wasn't my heart. I went through with the test and when it was over, strangely I had no pain what so ever.
What I feared most came upon me.....
The morning after the treadmill test I awoke to what felt like a horrible case of a "strange" flu. My throat felt like it was closing, and it was hard to breathe. I also had a fever, it felt like the flu times 10! I called the Md who gave me the cortisone shots. By the time appointment day arrived I now felt the original shoulder blade pain spreading from my shoulder blade downward to my kidney and right to the other shoulder blade. The MD ordered a kidney ultra sound, thinking now I had a kidney stone. By the time test day arrived, my pain had spread to the other kidney as well and was now wrapping around to my rib cage area. I was mentally cracking. I never had felt pain like this and it was spreading so rapidly. I was sure I would die and I was so scared, I wondered where and when it would end.
I looked at my calendar and in big letter's I had written "cancel appointment" on the day the shots were to be given - if only I had cancelled that appointment, if only.
A week after the shots, I could no longer eat. I had pain everywhere from the waist up at this point. My chest, upper back, my esophagus felt burned, literally like a hole existed in it. My stomach would only hold a few ounces of fluid and felt like the contents would choke me. I had horrible burning spinal pain, my stomach & intestine felt utterly burned, destroyed. I dropped 20 pounds within weeks. The kidney ultra sound results came back normal. I started to wonder if I had meningitis, I knew death had to be imminent.
I began to write goodbye letters to individual family members and letters to Md's in case I was rushed to the hospital and couldn't speak. I wanted them to know what had happened to me. I was sure I was dying and how I lived through all this and what was still to come, I can only credit God alone. I often say I actually did die in 2006 but my spirit hung around for some reason to remain in a very tortured severely injured body.
New symptoms were popping up faster than they could schedule tests, they'd schedule testing for one thing and before I could complete that test, the pain had spread elsewhere. I started to develop an excruciating painful tingling and numbness all over my body including my jaw, teeth and scalp, chest, back, stomach, legs, feet. The strangeness and the utterly painful searing nerve sensations I had never experienced and they were driving me crazy, there is no way to explain it. There is no pain so widespread so painful in every nerve, muscle, tendon, bone and cell all going on at the same time I could even compare it with. I felt like a prisoner, tortured day and night by an unseen assailant, trying my hardest to not mentally break.
More doctor's, ER's and more blood was taken, more testing still no diagnosis as the pain deepened and spread like wildfire. How much longer could I live? How much longer did I want to live? I asked each Md about the possibility of a bacterial or viral infection this is what it felt like since the shoulder blade pain started. None of the doctor's agreed stating it was "much too rare" or "impossible" after all, all basic blood tests were coming back "normal". I couldn't convince any Md of the bacterial or viral theory and I continued to exist in a state of pain, anxiety and near insanity that no one should ever have to experience and honestly, I am absolutely sure not many have to this extent and lived to tell the story.
Several months had passed by now and the pain was everywhere, all throughout my body, all at the same time. It ripped through me like hundreds of knives from every angle, stabbing, burning shooting pains everywhere, always and never a moment's rest from it. To explain this pain to someone who has never experienced it is quite impossible. I lived healthy for years and I could have never understood this without experiencing it. There really are no words and this is a very feeble attempt to help you imagine what I was going through. Every bone, every nerve, every tendon, every muscle. Even the skin from my scalp to my feet hurt so bad you could not touch me. Thumbtacks in my feet, nausea, sensitivity to sound, light, the list goes on, truly it would be easier to explain what I did NOT feel. It was too much. I became bedridden. My mind breaking, the pain being so widespread, it was just way too much for a mind to grasp my brain could not keep up with all the agonizing "action" in every part of my being. By the time is was over, or maybe I should say, beginning, it felt like a grenade had gone off inside my body and shrapnel was shredding me apart from the inside, out 24/7.
The education begins………..
My entire family was at a loss and very worried and thankfully very supportive. They knew me well enough to know something terrible was being missed. I warned them that I could die and felt I likely would. I wasn't eating, I was pale and thin and looked like I didn't have long to live. My sister began a search for MD's out of our area. I was now mindless of anything else but my own world of agony. I secluded myself from the world, not answering the phone or returning calls. There was nothing new to report, it hurt to talk and I was tired of answering the question, "How are you?"
It had been months now. While in bed would spend much of my time researching my symptoms online. Lyme Disease came up several times, but as far as I knew I hadn't been bitten by a tick so the search continued. Then I came across a Lyme symptoms list, the symptoms fit, almost exactly. Viral neuropathy fit as well. I was down to only 2 things that it could it be, I knew that much. I also knew the cortisone shots had suppressed my immune system badly and it had done something horrendous, but what? I would later learn of the many Lyme patients who had corticosteroids and the destruction it caused, even death.
The more I studied the more educated I became. I had read that not noticing a bite or a bulls eye rash was common. So the next visit to my Md I asked for a Lyme test. He told me I had already been tested and it was negative. He was starting to imply that I was making this up or was just crazy. I ignored his illiteracy and I insisted on the test. My parents were with me that day and my dad actually cornered the young-cocky-wet-behind-the-ears doctor and said, "There is something wrong with my daughter and you are missing it, do not believe for one second she is making this up!" Before I left the office that day, I insisted that he give me antibiotics as well. He reluctantly ordered the test and just as reluctantly prescribed 2 weeks of Amoxicillin. He was angry and told me, "Stop reading the internet, let me be the doctor!" Thankfully, I didn't take that advice, there is little doubt I would have never been diagnosed correctly and no doubt I'd be dead today.
I started the Amoxicillin and was sure within a few days I would be feeling better. I actually naively hoped I had Lyme, I had visions of wellness within days. That is what I had read, a few weeks and I'd be well. But I had gone months now, approaching 50+ symptoms. I didn't realize then it was much more complex than a simple bottle of amoxicillin. I had no idea that Lyme enters the nervous system almost immediately and becomes well established, hard to reach.
By day 3 on Amoxi my pain was worsening, how could I get any worse? I remember calling my mom, crying, screaming on the phone telling her that my pain was getting worse. She called a holistic doctor she knew and he told her, "Maybe the worsening is a die off reaction created from killing a bacteria". He was on the mark, but didn't' suggest what kind of bacteria could create a worsening of symptoms.
My research on Lyme Disease now became an intense search for answer a race against the clock. While my Lyme test results were still "out". I started finding reliable information. I learned about the unreliability of the standard test given at all labs and hospitals. I learned about "herxing" (die off reaction) the worsening of symptoms when antibiotics are started. I learned of a tick borne specialty lab called Igenex. I was now finally getting somewhere.
By the time the Lyme test result came back, I knew the test was unreliable, I knew it would be negative, so why was I so floored when it actually was negative for the second time? My Md called to deliver the news and then diagnosed me with a very obvious symptom, "anxiety". His tone on the phone that day was condescending as if I had lost my mind. I told him I no longer needed his help and that he was "a fool" and when I found out what was wrong, I would educate him. I hung up crying, hopeless and again begging God for an answer, even though I had the answer, the doctor made me doubt it.
A way out forever…..
The number one cause of Lyme Disease death is suicide. I didn't know for sure what was wrong with me then, but I was about to become a statistic without even knowing it.
For a strong willed, focused woman, I had totally lost myself to a world of agony I couldn't comprehend or believe anyone had been through anything close to this and survived to tell the story. When my husband and son were asleep I would go into my (walk-in) closet at night in agony. I'd lie on the floor holding my knees to my chest, just crying and begging God from the depth of my soul for help, release, even death. "Please God, kill me, heal me whatever necessary to end my suffering". I vowed in those very dark moments that if I survived this and found out what was wrong with me, I would let the world know. People could not be allowed to suffer like this and without knowing why. I often wondered many times, how many people or if there were any at all out there in the entire world suffering like I was and with no answer to why. I wondered how a body could handle this much pain and not die, it made no sense. Why didn't my heart just seize up and stop? Yet miraculously, I just kept breathing.
That same night, I was taking a shower, I felt my mind becoming totally and completely unhinged, I mean unhinged! It was a feeling I never before experienced. I became emotionally robotic, no longer crying, no emotions, just utterly disconnected from who I am and the tortured body in which I existed. I had been tortured by an unknown, unseen enemy that wouldn't stop for many months. I am surprised the "break" in my mind didn't happen sooner. As I showered I trembled in pain head to toe and I slid down to the floor of the shower, just staring, emotionless & dazed from the non-stop pain that wouldn't give me a moments rest. I wanted to wake up I wanted someone to shake me and wake me up and tell me it was only a nightmare. I thought of the dream that I had months ago of the fiery pit. I thought of my beautiful son, my parents and husband how much they wanted the old me back, but she was nowhere to be found. I looked down at the water swirling around me, I wished I could drown there, I wanted to die, death was my only way out. I momentarily wondered if I was losing my mind and for a few minutes I concentrated hard to "will away" the pain, but it continued. It was real, it was consuming me and I could no longer live another minute like this.
My mind was set. I didn't think how those who loved me would feel, I honestly didn't care. I was in the darkest place a mind can go. In fact I thought my family was being extremely selfish for expecting me to go on living for them in this horrible condition. I knew I could no longer live like this, not one more minute, hour or day. I wanted it over and the way out was clear, I felt relief knowing it would soon be over. I would be free. In minutes I quickly planned to end my life. I had never had a suicidal thought in my life, not one until now. It was so completely out character for me, but my character had been swallowed up in burning hell of agony. I have always been a happy person, one who loved life and would spring out bed anxious for the day and positive through and through. I had never experienced a depressed day, not ever in my life. But the pain, the pain, the pain, the pain it was too much pain, never ending constant torture and I didn't believe that anyone could help me.
As I sat on the floor of the shower, I pictured in my mind a dramatic end to it all, I would get into my car travel a nearby road where few cars were, get the car up to 90 mph and slam into a telephone pole. I pictured sparks flying the pole disintegrating, this would surely get some ones attention and I would have been happy to prove to all those doctors I had seen, that surely the autopsy would reveal what was wrong.
There would be no goodbyes to my son who was on his computer, no goodbyes to my husband sitting watching a basketball game. Very lost in a world of agony, I would quietly leave them. As I prepared for the last few minutes of my life, I put my robe on, hair still wet, I grabbed my keys and headed for the door. Then something insignificant caught my attention. A CD series by my favorite minister, Joyce Meyer, called "The Power of Hope". The amazing thing about this CD series was that it arrived months before I was sick in the mail. I never ordered it and no one ordered it for me. I wasn't sick then and I certainly wasn't hopeless. When it arrived, I remember thinking "Hope? What in the world, where did this come from?" and I threw it in a drawer.
There it was lying on my dresser somehow. I looked at the CD series and for a moment my mind thought "Hope?" Is there really such a thing?" In a God-given-decision-changing-second, I decided to listen to the CD's. I had never been so hopeless. I asked my husband to help me put headphones on, my scalp was so tender and hurt so badly, I could barely get the headphones on. He got me set up with the Cd player and I went to my bed and lay there listening, eyes closed and trying very hard to focus on the subject, not the pain that engulfed my body like the fire I had dreamt of. I ended up listening to all 4 Cd's that night and when they were over, I listened again until I felt renewed mentally & spiritually and it gave me inner strength, it gave me a glimmer of hope. I didn't feel it in my body, but I felt it in my heart and spirit.
A prayer answered………..
Obviously and thankfully, I never went through with my plan, again, hind sight is 20/20 and I never knew then that help was around the corner. My prayers were answered when I received a call from my sister soon thereafter. She said she had found an Md who was known for "mystery ailments" and in depth blood testing 2 hours away from me. I was very doubtful. I had to wait 2 weeks until my appointment and in the meantime I spoke several times with a woman in their office who assured me they had seen many like me and they could diagnose me, I was convinced I had to see this doctor.
I learned only when I arrived at the doctor's office they primarily dealt with tick borne illnesses. I had no idea there was such a doctor. I had literally fallen into the hands of an LLMD (Lyme literate Md). God is so good.
When I met with the doctor, I had developed a "chip on my shoulder" sure he would be just another dead end and I would be diagnosed with depression or some other obvious symptom. I told him my entire story and he sat there and listened intently like no other doctor had for over an hour and when I was finished speaking, I asked, "Do you think I am crazy?" He said, "No, I think you have one or more tick borne diseases". Someone believed me? A doctor actually believed me! No anxiety diagnosis, no implying I was crazy? God is amazing.
I asked about the possibility of having viral issues too, he agreed that too was a possibility. They tested my blood for viruses and the results came back positive for 4 active viruses, HHV6, CMV, EBV & HSV. In fact my viral titers were so high, my LLMd said he had never seen titers that high in his career and he said he couldn't imagine all the pain I was suffering.
Finally, my blood test for tick borne diseases were sent to Igenex Lab (now used world wide for its accuracy by Lyme literate Md's) and 2 weeks later I received the call from my LLMd, I was "..a strong positive for Lyme Disease, as well as 2 co-infections, Bartonella and Ehrlichiosis". I cried. Not tears of joy either, I knew I had a long painful road ahead, I also knew I may never be well, but I knew there was at least some hope. I was started on a combo of antibiotics and antivirals immediately.
I have been on many antibiotics, antivirals and I am unable to take them at the high doses recommended. I have found them all extremely hard to tolerate at the pain levels I experience. The most progress was made on Amoxi w/Biaxin right away. Later, I was put on Bicillin IM injections, the shots are painful but nothing compared to what I have suffered, the herx intolerable at times and a mental annihilator because it does kill well in the brain, as well as IV according to my LLMd. The co-infections give virulence to Lyme and unless they are all wiped out, the diseases will persist.
I have all but given up treatment for now to mainly focus on rebuilding my body and symptom relief. I have found that Lyme can wipe out vitamins and minerals and truly people need to know that minerals, especially magnesium, are absolutely important to helping the nervous system. I remain in pain management; it has taken years to find a decent combo of meds that help to some degree. I do injections daily of either Magnesium sulfate or Methyl B12 to restore nervous system function. I also invested in an Infrared Sauna (at the urging of my doctor) that is absolutely the best investment I have made, it helps to raise body temperature, which some doctors believe will effectively kill most bacteria's, over time. It detoxes the body and heals damage. Infrared sauna must become a way of life, not something temporary, so I invested in a good one.
My LLMD believes that Lyme Disease was "percolating" for years, coming out one symptom at a time, the migraines, the vertigo, the body aches then finally, the trigger that caused the explosion. The cortisone shots that hammered my immune system, effectively knocking out the fighting ability of my immune system, rendering it incapable of fighting any bacteria or virus and both viral and bacterial diseases disseminated body-wide, into my nervous system causing pain and neuropathy throughout my entire body that cannot be described in words.
The pain I have lived with is not in vain and how God uses it…..
My diagnosis helped 5 others in my family alone and solved the mystery of my son's illness at age 7. My son & husband tested through Igenex within months of my diagnosis, even though both were not symptomatic at the time, they were positive. My sister's family has tested positive as well. It solved the 20 year mystery for my brother in law of why he was sick so long with no answers. A positive test doesn't necessarily mean active lyme. Active Lyme is based on symptoms.
My son's Lyme was dormant from age 7 until 17. But unfortunately after getting a deep skin infection (staph) from a cut, it brought Lyme out of dormancy, one year after my diagnosis. I would have never known what was wrong with him hadn't I experienced Lyme first hand, but I recognized it quickly and he was soon in treatment, I am glad I was here to help him get the help he needs.
It is believed the Lyme bacteria never leaves the body, it only goes dormant, into remission. Our immune systems must become stronger and the bacteria must be knocked down, in order keep the disease under control. Some people can recover completely and for long periods, years and years at a time, maybe even a lifetime.
My husband went through 2 years of Lyme treatment, mostly as a precautionary and to see if it helped the pain he lives with, it didn't help and it didn't hurt. He still battles pain daily. He is believed to have an "inactive" infection and his pain is likely related to structural injuries and surgeries. Yet, I can recognize “flares” of the disease when he reports certain symptoms that only Lyme can create.
I have had an extremely painful case with so many things going wrong. It is truly a miracle I didn't die. My doctor has said developing a pain syndrome as severe as mine, he sees it, but not every day. Lyme Disease and co-infections mixed with active viruses can be an extremely painful combination especially since they head straight for the nervous system for their attack. The best advice I can offer anyone - stay away from corticosteroids. I learned the leading LLMd in the U.S. coined a term - "the steroid disaster" and trust me he wasn't joking. Yes, some people never experience what I have after shots, others do. Do not be willing to take the chance. Rule of thumb, no shots, no pills, no inhalers, that are immunosuppressant, not once, not ever.
I learned that any kind of cortisone (Kenalog, Prednisone just to name 2, but there are many, many more corticosteroids) given with a bacterial infection can be deadly and there are records of Lyme patients actually dying. I know without a doubt I was at deaths door with one foot inside. It had knocked out my immune system and give opportunity to the bacterias and awakening dormant viruses pushing them deep into my body and nervous system. Many have made the same mistake as I have and suffer beyond comprehension because of it.
No end to the list of symptoms……
I have experienced so many symptoms on the “Lyme-list”, there are few I have not had and some that aren't even on the list. My best guess is about 50+ symptoms in all. Some of my symptoms include: tender painful scalp, sparking nerve pain in my scalp (cranial neuropathy), jaw, teeth, legs and feet, muscle twitches, migrating pain, shooting, burning, stabbing, pins & needles, numbness, blurry vision, deep ear pain, burning spinal pain, stomach pain, intestinal pain, rib cage pain, memory problems, brain fog, chest pain, headaches front/back of my head, shoulder blade pain, kidney pain, bladder pain, pulling stretching burning nerve pain in my legs, bee sting feelings, water dripping feelings, shocking electrical sensations, burning eyes, narcolepsy-like fatigue, hopelessness, emotional mood swings, crying non-stop for days, leg weakness, joint pain, tendon pain, neck pain, sacrum pain, spinal pain, foot pain, feeling of walking on thumbtacks, hot flashes in my feet, internal tremors, nausea, balance problems, vertigo and even shooting pains in my bladder and even rectally. I also have had ringing in my ears, anxiety/panic attacks, heart palpitations, depression & vivid nightmares. There really are not any places in my body that I haven't had pain. Physical findings related to Lyme: brain lesions thyroid nodules & uterine fibroid tumors.
I have endured tremendous suffering and pain that I never could have imagined existed. No one should ever have to experience pain/sickness to this degree. Doctor's should have nailed this right away, but 99.9% are completely illiterate. I have learned of the Lyme-wars between Lyme literate Md's and mainstream Md's. Some don't even believe "chronic" Lyme exists, but I am here to tell you along with many thousands of sufferers it DOES exist!
I have spoken with thousands of suffering Lyme patients through email, Lyme forums. I started Christian Lyme Disease Support on Facebook. There are many ways to connect with the Lyme-world on Facebook, many forums and help available to those looking for help. The Lyme community is the kindest most understanding human beings on this earth. They are the silver lining in this cloud. I have met so many wonderful people. I try to do all I can to lead those suffering to find help. If I have made the difference in one person's life, then the suffering I have been through has been worth it.
Years ago in that closet of my bedroom, on the floor crying out to God, I vowed to tell the world what happened to me when I learned what was wrong. I am thankful to God that I have been given this chance to do so here. I started this website with high hopes that people searching for answers will find their way here and learn that they are not alone, there are many thousands of us and there is hope, there is treatment available.
Just remember please, if you are sick or in pain never give up, never give up! Don't let that darkness envelope you as it did me, as it has many others that have completed their mission to end their lives. Your answer could come tomorrow, don't quit today! This life is a gift, perfect no. Make your misery your mission to help others and keep believing and never lose hope!
If you'd like more information/support join our forum on Facebook. Click on the "Forum" tab at the top of this page. For help finding an LLMd, please click the "Resources"tab at the top of this page. More information can be found by clicking the tab "Everything you need to know" also at the top of this page.
Peace & prayers in your pursuit of health,
This site is dedicated to all those suffering from Lyme Disease, my prayers for you go up daily. May God bless you with renewed health and so importantly a positive, hopeful outlook during the battle. You have purpose!