I have most likely had Lyme for thirty-five years. I have a great immune system so was healthy most of the time though I had random symptoms for as long as I can remember. I was disabled by the illness in 1982, 1986, and 1991.
Through my healthy years I had weird issues, like in the fall my shoulders would ache. I thought I was just in bad shape and the heavy sweaters caused pain. I had terrible fatigue and wondered why everyone else wasn't as tired. They were all problems that could be considered somewhat normal.
Then in 1982 when I was in college, I was so tired all the time that I got up only for class. My roommate was very worried and took me to the emergency room, where the doctor told me not to drink so much alcohol. This lasted several months, then resolved with a lot of rest, exercise and sunshine. Ironically, I had terrible insomnia despite the debilitating fatigue.
A repeat happened in 1986.
A special post today to update you on the release of my novel about Lyme disease, Over the Edge. Remember, if you’ve submitted your Lyme story to this blog, you need not buy the book. A free copy will be sent to you after the book is released on May 1. But for all your friends and family, I want you to know I just found a special price for Over the Edge on Amazon. This pre-order price of $9.99 is a full one-third off the regular store retail price of $15. Pre-ordered books will be sent to buyers as soon as the book is released in May.
Over the Edge has garnered some wonderful endorsements from people well known in the Lyme world, including Dr. Nick Harris, President/CEO of IGeneX; Dr. Christine Green, an experienced Lyme-literate doctor in California; and Jim Wilson, founder of CanLyme, the Canadian organization for fighting Lyme disease.
Folks, I’m very excited about the release of this novel. The story is suspenseful and fast-paced—fulfilling my brand of Seatbelt Suspense®. At the same time, interwoven into the story is a lot of information on Lyme disease and the Lyme wars. Lyme patients will feel validated in reading this book, because Jannie displays many of the symptoms they struggle with. And your friends and family will better understand those of you fighting Lyme. Even my close friends, after reading the manuscript, all said, “Wow. We saw you go through the disease, but now we have such a better understanding of what you had to fight.” This is exactly what I want to hear! I know many people may not pick up a nonfiction book about Lyme disease. But they may read a suspense novel for entertainment, never realizing—until the book is done—how much they’re going to learn about the disease and its medical challenges.
In addition to the story itself, in the back of the book I’ve included a rather lengthy Author’s Note that explains the Lyme wars and the challenges Lyme patients face. The Author’s Note also includes links for further information about Lyme, and for learning about Lyme symptoms, testing, and how to find a Lyme-literate doctor.
A New York publicity firm is setting up radio and TV appearances for me in May—Lyme Awareness Month. I will keep you informed. Whenever I appear, I will not simply be talking about the novel. I will use the novel’s platform to talk about the plight of Lyme patients and to emphasize that changes in the medical system must be made.
Back cover info about Over the Edge:
---------------------------------
Janessa McNeil’s husband, Dr. Brock McNeil, a researcher and professor at Stanford University's Department of Medicine, specializes in tick-borne diseases—especially Lyme. For years he has insisted that chronic Lyme disease doesn't exist. Even as patients across the country are getting sicker, the committee Brock chairs is about to announce its latest findings—which will further seal the door shut for Lyme treatment.
One embittered man sets out to prove Dr. McNeil wrong by giving him a close-up view of the very disease he denies. The man infects Janessa with Lyme, then states his demand: convince her husband to publicly reverse his stand on Lyme—or their young daughter will be next.
But Janessa's marriage is already rocky. She's so sick she can hardly move or think. And her husband denies she has Lyme at all.
“Welcome to the Lyme wars,” Janessa.
-----------------------------------
You can read the prologue of Over the Edge here.
Feel free to link to this post from your own blogs, and to post about the pre-order price. And by the way, are you connected to my new business page on Facebook? That's a good way to keep up with my news and upcoming media appearances. Just visit the page and click the "Like" button.
Pre-order Over the Edge now from Amazon.
Last January on my 23rd birthday I checked into the hospital, as suggested by my neurologist, to have a battery of tests run. I had MRI’s, CT scans, a spinal tap, HIV and AIDS test, and saw an infectious disease specialist. Everything came back stellar except for an elevated white blood cell count. They released me from the hospital, told me I had migraine issues, and prescribed meds.
They suggested I see a balance specialist next, so I had a balance test done. It showed slight damage in my left ear but was at the marginal level to have any impact. The specialists said I had a vestibular problem and needed balance therapy. I went along with it and had balance therapy three times a week.
Each time I went my vertigo increased gradually and the therapist was perplexed that I hadn’t shown any improvement. I decided to go seek a second opinion at the Eye and Ear Infirmary in NYC, one of the best. I took another vestibular test and various others. This time nothing came back at all. I went to the head of the department who was well renowned for making “miracles” happen with his patients. He treated me for four months, again with no substantial gains. A very confident man, he was baffled and told me he was deeply sorry that he could do nothing for me.
I was near the end of my rope. I didn’t know where to turn. I was deteriorating rapidly. I had completely abandoned the life I once cherished. I couldn’t move out of bed, and trying to maintain simple dialog with someone seemed next to impossible. I began to be moody, and found my emotional threshold was on a very short line. All the neurological factors began to come into play--the brain fog, poor concentration, poor memory, shaking, light sensitivity, anxiety, head tremors, blurred vision, heart palpitations, dyslexic indications, and problems with sensory integration.
Mid September 2009 is when I finally stumbled upon the answer I had been looking for. A friend of the family knew someone who has been in remission from Lyme disease for nearly eight years. She was informed about my symptoms, and urgently told me I should go see her LLMD. She said her case sounded an awful lot like mine. So I booked my first appointment with an LLMD in Mount Kisco, NY.
He wrote down my symptoms and took blood. The doctor immediately put me on Amoxicillin and was convinced I had Lyme. My blood work returned, and I received a negative result once again. The doctor was not discouraged, and stated that this happens to about 50% of patients due to inaccurate tests. He said it’s often referred to as a false negative. The only concrete evidence was that my white blood cell count was elevated substantially, and he called these Lyme marker indicators. He is basing my case on the literature and not the tenuous tests and knowledge that surround this dreadful disease.
The oral prescriptions I was on for two months did virtually nothing for me, so now I am on the big dog “Rocephin IV” coupled with Zithromax. The first two months I started to make some headway, with suppression of fatigue, dizziness, migraines, heart palps, brain fog, concentration, blurred vision and so on. Then I started to herx badly around week ten.
All these symptoms returned full-fledged--if not worsened--and new symptoms began to emerge. I started to feel excruciating pains throughout my body and became intermittently numb throughout the course of the day. The doctor says this is a telltale sign of good things to come and I trust him implicitly. He has done wonders for many, and I have confidence in him. This is my 14th week of treatment and am still in the abyss of a herx.
UPDATE: I am nine months into this merciless battle and I have just switched LLMD’s. I am on a very compressive protocol. I re-took my lab work and this time sent it through IGeneX Labs. Finally after nearly two years of searching for some peace of mind, I received a strong positive Western Blot Lyme test which is CDC positive through the State of NY. My blood work also showed that I have secondary infections which are caused by a tick bite as well. I am positive for Epstein Barr Virus, Mycoplasma and HHV-6. I also have low levels of exposure to Q-Fever, but my doctor believes the levels are so low that he isn't concerned yet.
I'm still unsure where and when I contracted Lyme Disease. There are four different scenarios that could have been the case. The longest would go back about six years and the shortest about two years. It is common for the disease to stay in a quiescent stage for a long time. This could explain why it took so long for my symptoms to manifest.
So my plight continues as I desperately try to make sense of this all. However, I have made some progress. I was bed-bound for months and could barely pull myself together to get to the bathroom, or hold myself up long enough to take a shower. I am still facing ailments that make me incapacitated and home-bound. But now I am able to do small tasks as long as they are limited and not sequential. Living life with a chronic illness puts things into perspective for you. It makes you appreciate the things you once took for granted, and health is of paramount importance.
The compulsory confinement is not easy for a young adult. Never would I have conceived that a simple task like walking my dog to the front yard would be so grueling, holding a conversation with my best friends would be something to dread, or simply running an errand to a store would be unbearable because my brain doesn’t have the capacity to deal with environmental stimuli. Lyme's Disease is one of the most misunderstood and distorted diseases, and is becoming a pandemic. It strips you of your identity and personal sense of self. The journey back to health is a long haul--costly, filled with affliction and adversity--and is one of the toughest uphill battles one will ever encounter.
This is going to be a massive hurdle and a trial by fire. But I have to believe I will see the dawn of a new day and regain control of my life. The sense of solidarity in the Lyme community has lifted my spirits when I am in total despair. So as a testament to myself, family, and supporters, I will put forth a valiant effort. I will make sure when I see this through, that those who are still suffering--or have just started their journey towards health--find the courage and support they need.
It's difficult to deal with all the slander, scrutiny, and lack of credibility surrounding Lyme, but we all have a purpose here. We will set the stage, as we are the pioneers for this disease. Because we played an integral part, there will be a voice for those in the future, and hopefully a diagnosis. Stay strong everyone, and carry on!
Chris Michael Nimphius, New York
Nearly two years ago I was on spring break having the time of my life, partying quite hard as most college young adults do. I remember very vividly when my first symptoms started to manifest. It was the last night of our stay and we had just started out on our adventure towards debauchery.
We finally made it to the club, which was huge and could fit more than ten thousand people. One of my buddies was lagging behind. I told the rest of the people to go ahead and I would catch up with them while I waited for my friend. After some time I was informed that he wouldn’t be joining us, so I went ahead with my plans. I attempted to find the group that had gone ahead without me.
While frantically looking for my friends, I suddenly became extremely lightheaded, light/noise sensitive, and I thought I was going to collapse at any moment. I was now even more panic-stricken and needed to find my friends. I tried to elicit all the energy left in my mind and body. Finally I located one of my friends and implored him to leave with me. This way if I was going to faint in this strange environment, at least I wouldn’t be alone.
We left the club and decided it was best to stop at a cafe for water. Maybe I was just extremely dehydrated. Much to my dismay this didn’t help. We finally made it back to the hotel, which seemed like an eternity. At least this was a refuge from the all impurities outside. I tried to sleep before we had to catch a flight back home in the morning, but I had no luck. Then the notorious preamble to Lyme started. Suddenly I had flu-like symptoms. I was freezing, yet sweating profusely at the same time.
Please understand that if I had written this a few years back, it would have not only been a breeze, but I would have been thrilled to embark on a project with such a hugely important subject. Writing is my heart. It kills me to say that it is now the hardest thing in the world for me to do. Lyme is in my brain, and my mind is what has paid the biggest price. This is my story, painfully condensed.
In the summer of 1973 I was bitten by a tick. At first the little bump behind my ear didn’t bother me much, but then it started to feel hot. It must have bothered Mom too because she brought me to the doctor to have it removed. It felt like the doctor had stuck a needle behind my ear and I screamed. I was only three years old.
About a week later, I developed encephalitis, an infection of the brain. It began with a fever and a nightmare I could not wake up from. There were bees all around me, stinging and burning my skin. Finally, I opened my eyes to the painfully bright walls of our bathroom. My father sat in front of me, eyes wild and fearful. I wanted to tell him I was awake, but my head hurt and the light was too bright. I closed my eyes and the buzzing in my ears turned to sirens.
--------------------------------------------------------------------------------
I don’t remember the time in the hospital. What I do remember is a mixture of nightmares, hallucinations and rare moments of reality all jumbled together. This went on for a couple years. I remember being the only one in kindergarten with grey streaks in my hair. It was hard to concentrate in school and I was often so sick I would miss weeks of school at a time. My shins hurt really bad at night and the nightly nightmares continued. Everyone always thought I was being a crybaby or faking when I just didn’t feel right, and that made me more determined to endure as much as I could. There were times I felt fine, which made it harder to understand when I didn’t.
At the age of 14 I was brutally raped at gunpoint and physically abused. I became suicidal and developed a life-long injury to my hip from the physical abuse. Then at the age of 24, while pregnant with my first child, I was in a car accident. Nothing was broken, but somehow my back was never the same, just like the minor injury to my hip that left me with a limp. At 25 I gave birth to my son via emergency c-section. He was over nine pounds, strong and healthy. I went into shock. Recovery was a long and slow process. I suffered severe postpartum depression and probably as a direct result, a divorce from my husband soon followed.
Within a year, I met the man who would become my best friend and partner. He took me to beautiful places like the San Juan Islands where he first taught me to drive a boat. We both loved the outdoors, enjoying walks in the woods and numerous trips to the beach. After the birth of my second child I was still very active, but with each child, my back got worse and worse. By the time I had my third child, there was no denying that there was something very wrong with my back and hips. Then after sneezing, I herniated a disk and my prescribed bed rest left me barely able to move.
Finally I was referred to an orthopedic surgeon who diagnosed me with sacroiliitis, arthritis in the joints connecting my hips to my spine. I was sent to a rheumatologist who said after viewing my CT scan that there was arthritis all throughout my spine. Then he added that it was, “not a rheumatologic issue” and referred me to a sports injury specialist who promptly referred me to a physical therapist. All the while, my regular doctor was experimenting with various NSAID’s, (non steroidal anti-inflammatory). At the same time, I was having a painful swelling in my groin area that never was diagnosed.
Then came an excruciating kidney infection that left me with serious doubts about my medications. At one point I was given Vioxx and found myself in the ER, barely breathing, with a stiff neck.
Then there was “Sky.” He would have been my fourth child, but I lost him. After that I went off all medications, thinking that somehow the NSAID’s had killed my baby. I soon became pregnant again and lost that one too. By my third try, which I vowed to be my last, my doctor finally discovered that I was no longer producing progesterone, a hormone needed to prepare my body for childbirth. My baby was born just over six pounds, with jaundice--but alive!
About a year later, I was rushed to the hospital with horrible abdominal pain. I was diagnosed with diverticulitis, an infection of the large intestines. I was put on heavy duty antibiotics, and after taking them for just a few days, I began having horrible headaches down the back of my head. Another trip to the ER gained me a bottle of morphine, but no answers. Later when I saw my doctor for a follow-up, she said I was having caffeine withdrawal from being on a restricted diet. Eventually the headaches subsided and I thought the worst was over.
Then on February 26th, 2009, my whole world came crashing down. I received a phone call that morning letting me know that my best friend, who was like a brother to me, had passed away. At that very moment it was like a ton of weight had been thrown upon the back of my neck. I could barely hold my head up, and then the headaches came even worse than before. I struggled through the week of his funeral short of breath and having sharp chest pains as well as the unbearable headaches. My doctor insisted that it must be a new onset of migraine headaches. I no longer trusted her and decided to do my own research.
I stumbled onto an article called, “When to suspect Lyme.” I hadn’t even thought about the tick bite many years before, but I was curious and read it. It was like reading about myself, and by the end of the article I was sobbing. I knew I had finally found the answer. I went to my doctor right away, but her response was not at all what I had expected. Despite all the evidence right in front of her--my three inch thick medical file--she insisted that Lyme is not in Washington State. She agreed to a blood test, but said she would be flabbergasted if it came back positive. The first test was negative, but I refused to give up.
I sold my cars, took out loans, whatever I could do to afford an LLMD (Lyme Literate Medical Doctor). He immediately ordered a western blot blood test, which is much more accurate than the previous blood test I took. It came back positive.
Thirty-six years after being infected with Lyme disease, I finally received a diagnosis! I now take about 25 pills a day and still suffer with excruciating headaches, stiff neck, horrible back pain, numbness in both arms and legs, severe sensitivity to light, shortness of breath, sharp chest pains, dizziness, clumsiness, terrible short term memory, chills and fevers, and many other symptoms.
I have been undergoing treatment for Lyme for over six months now with no improvement. I sometimes wonder if I will ever get better. I know I have to keep fighting though, because this is much bigger than I am. I’ve learned that there are others like me, and I’ve learned that at least two of my four children were probably infected with Lyme while still in my womb. My fight is now for them, and I can only pray that they will be diagnosed before it is too late.
I cannot afford an LLMD for every member of my family. I can’t even afford my own treatment. If more people understood--if more doctors understood the devastating effects of delayed diagnosis, there would be no more people like me. Chronic Lyme Disease wouldn’t have to exist. But it does.
Christina Lindell, Washington
How is it that a child can sense something is not quite right when she seems to be the picture of health to all who observe? It was the little things, you know? Frequent stiff necks – one so severe I had to wear a neck brace for weeks. Cluster headaches that were diagnosed as allergy-induced sinus headaches. Fatigued and feeling so cold all the time that some thought I must be anemic, but my iron count couldn’t have been more perfect.
I can’t remember a time in my life when I didn’t bruise easily. And my eyes would get tired easily; the more I read the more they hurt and the blurrier my vision would become. But it wasn’t a vision problem. An eye doctor finally diagnosed me with weak eye muscles and gave me a prescription strong enough to be considered reading glasses by today’s standards.
My muscles would get sore as naturally as any other child’s when doing things the body wasn’t used to, but it always took me days longer to overcome the soreness than it did other children. My comprehension level was low. Explain something while showing me and I could get it. Expect me to read or follow along while reading and it was gibberish.
There were times when I’d get the flu and nobody else would. But the strangest thing was every now and then I would wake in the middle of the night with this uncontrollable need to continually swallow. I would inevitably vomit. Though sometimes I had night sweats, there was no fever and no extended illness. Usually after I vomited I was fine by morning.
After a waterslide accident at the age of twelve in which I injured my spine, I began to have chronic pain down my right side. My sacrum was - and still is - constantly swollen, and I developed Irritable Bowel Syndrome. I always had problems with the inability to gain weight, but this made it worse.
Was my immune system wrecked?
As a trained herbalist and health-conscious individual, I changed my diet, used herbal medicines as needed for the ever-growing list of ailments, and I started doing some research into what might be going on. I’d feel great for while, and then, out of the blue, I’d be slammed with another round of misery. What started out like the flu--fatigue, achy joints, stiff neck and headache--was getting progressively worse with each new episode. These episodes of assault were lasting for weeks at a time with a distinct cycle of symptoms, to the extent that I started fearing for how much more my body could take without suffering permanent damage.
Jesse and I moved to the San Francisco Bay Area in 2005. I’d written off graduate school by then because I was too sick too frequently and no longer felt like I could make a commitment to anything of significance. The chronic digestive issues were nothing compared to what was happening now. In 2006, I found myself in the ER at UCSF Hospital from the severity of the current assault. Amongst many other things, I’d experienced a temporary paralysis of my limbs. The ER doctors ran a battery of tests and couldn’t find anything. They referred me to specialist who ran another battery of tests and decided I had an autoimmune condition involving my nervous system. He surmised that I would need to take steroids for the rest of my life.
I declined and followed-up with another physician who ran another battery of tests and found nothing. To each of these doctors, I specifically noted the tick bites with the bull’s eye rash and the deterioration of my health from that specific moment in time onward. Each of them ignored that piece of the puzzle. Without another answer, it became easy for me to do the same.
I grew up in a beautiful small town in western Kentucky. I spent much of my childhood playing outdoors at my grandmother’s little farm “in the country” and, as a teenager, with a growing love for nature, I frequented the Land Between the Lakes for long hikes, picnics and camping trips. Ticks were just part of being outside. We’d do tick-checks when we got home and flush the little buggers down the toilet. They were common and no one seemed to think anything of them. Nor did anyone seem to know the potential dangers of the illnesses they carry. As creepy as ticks may be, they didn’t keep me from doing the things I loved or visiting places of beauty in nature.
As a child and teenager, I was healthy, strong and athletic. I swam every day in the summer, played varsity tennis from the seventh or eighth grade through my junior year of high school, often accompanied my father on golf outings and helped my mother in the garden. I never had a broken bone, any sort of surgery, or any memorable illness until my senior year. During the late summer of 1995, I accompanied a friend on an off-trail exploration through a forest in Cadiz, Kentucky.
At some point during our hike, I discovered a multitude of ticks crawling all over my legs, as did my friend. They were too many to count and had somehow managed to find their way past pant legs down to my ankles, and socks pulled up to my knees. Both of us were covered from the hips down with these tiny monsters. It was the first time I experienced ticks in mass numbers, so many of them covering such a large area of my body. While a random tick here or there was common, this was a new experience with a distinct sense of urgency.
Then in 1982 when I was in college, I was so tired all the time that I got up only for class. My roommate was very worried and took me to the emergency room, where the doctor told me not to drink so much alcohol. This lasted several months, then resolved with a lot of rest, exercise and sunshine. Ironically, I had terrible insomnia despite the debilitating fatigue.
