Have You Heard About Lyme Disease? If only I had known…

When I moved to Wisconsin in December of 1991,  I had absolutely no idea what a tick looked like. Indeed, that tiny oversight in my life would prove to be the most life-changing event to ever occur.

Along with the associated difficulties of selling our Illinois home and packing up two toddlers and a household of possessions while surveying and purchasing another home in only a two-week time period (due to a job transfer), I would never have imagined that health issues would become part of the mix. The “urge” to move had been so positive, so convicting, so assuredly the “right” thing to do. If only I had known…

Then came a sunny August day which I thought would be better spent outdoors in the backyard of our Elkhorn home, about 15 miles north of the IL/WI border. Later that day when I rescued my 3-year old’s eyesight from the randomly flung sand delivered by her 2.5 years younger brother’s orange sandbox shovel, I had no idea the black specks that were solidly attached to my children’s legs were the tiny nymphs of Ixodes scapularis (black-legged) deer ticks. I had no idea there are hard-bodied and soft-bodied ticks nor many different species which transmit diseases. That summer day and another soon after which presented me with an adult tick that was lodged upon my left shoulderblade would launch my family on a curious odyssey of illness, discrimination, family separation, and my career of research and writing that would span the next decades of our lives. If only I had known…

In 2006 I wrote my first book about Lyme disease and the toll it took on just one family, because we did not know about Lyme or the arthropods (jointed legs) including ticks, mites, lice that transmit a tiny corkscrew-shaped bacterium called Borrelia burgdorferi or “Bb” for short. It would be years before I would be among the first to publish in my books that Bb is transmitted by mosquitoes and insects, where the organisms have been found in the guts of these and other insects (although the scientific arena continues to deny the possibility that mosquitoes can transmit these infections). And over a decade of research, there would be much that I would discover about these organisms and their carriers (vectors) that had not yet been published until my books. If only I had known…

In 1994 after two years of fighting debilitating symptoms which ranged from migraines and intense “gallbladder” attacks, to neurological issues, a heart arrhythmia, and hallucinations of imaginary but 3-D and very life-like people walking around my bedroom when I would awaken, I was tired of the dismissals by my “expert” doctors who told me that there was “no” Lyme disease in the state of Wisconsin. Meanwhile just two hours north of where I lived, Yale University scientists were trolling the woods around a military camp, collecting and evaluating fauna for evidence of tick-borne diseases. I swore to the Lord that if He would “allow” me to discover the origins of this insidious illness and change the way the disease was denied in the medical arena, that the suffering that I and my children were enduring (for they were ill as well), would be worth it. If only I had known…

A few years later I would go from being a vibrant and relatively healthy 30-something to a debilitated, largely bed-bound shadow of my former self, and I would have to close my home-based business that was already operating in the 6-figure range with very little effort. Years would pass as rapidly as the doors the physicians closed behind me as they told me my lab tests were “normal” and my symptoms were “all in my head.” I was often told to take a vacation, get more rest, and stop worrying about every little thing that I felt. How does one stop worrying about imaginary people walking around their bedroom? How do we stop worrying about headaches which are so intense there are no vocabulary words to describe the level of pain? How does one stop worrying when they cannot function to change the diapers of their children, fix a meal, brush their own hair, get out of bed and use their legs to walk, or a myriad of other symptoms so bizarre and foreign to us (and which change on a daily basis) that to describe what are so numerous that we need a pen and paper to write them all down? If only I had known…

For those of you who have not read my work over the past decade, I will tell you that this family endured a dozen years in a post-divorce family court, other court-related matters, custody reversals, denied illness at the highest levels of the medical world, discrimination and false allegations, untreated infections, and far more than I care to regurgitate here. But you may read the short story of this history in my REVISED and recent book titled “The Singing Forest: A Journey Through Lyme Disease (Revisited).” In this version of the book, I have rewritten the entire story and included events that are not told in the first edition of this book, as well as have revealed the first part of the truth about the origins of the Lyme disease and Morgellon’s spirochete, Bb. Yes I am saying again what I have been talking about to physicians since 2006. Indeed when I released the first edition of this book in 2006, there were some very strange visitors to my web site. I hardly expected web site traffic from Langley, Virginia (home of the CIA); Ft. Collins, Colorado (home of the CDC); New Haven, Connecticut (home of a certain ivy league university and related research stations); and from a site in So. America which is home to some important agricultural laboratories. Why would anyone from any of these areas visit my then humble web site, let alone know who some then obscure Lyme patient/author was?  Perhaps it was not what was in the book at the time, but what I had printed on the cover of the book that was the culprit. If only I had known…

In my later book series “It’s All In Your Head” I revealed the anecdotal transmission of Lyme disease via mosquitoes; the evidence that Lyme was a persisting infection; that it is sexually transmissible; that it is transmissible in utero, via nursing, and via sexual fluids as well as other bodily fluids including urine, sweat, and saliva. I collected more than 200 stories from Lyme patients around the world and selected 80 from 11 countries and the US to tell the story of what life is like living with Lyme disease. If only I had known…

The third book in the series is “The Baker’s Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm?” I had no idea when I wrote it that it would become an integral part of a Connecticut anti-trust lawsuit against the Infectious Diseases Society of America (IDSA) medical diagnostic and treatment guidelines for Lyme disease; nor a popular Lyme documentary film called Under Our Skin. (Open Eye pictures). I also had no idea that its inclusion as part of the evidence in a post-finding hearing in Washington, DC would provide the kind of global exposure that the book would receive. I also had no idea that I would end up providing research for legal and medical lawsuits around the world. If only I had known…

In time I would write several more books about Lyme disease, including “God Science: The Secret World of Rampant Genetics, Hidden Illness, and Biotech Profiteering” and “The Fourth Monkey: An Untold History of the Lyme Disease Epidemic.” Both of these books would reveal the true history of the origins of Lyme disease, which does not in fact hail from Connecticut as a basic illness – it came from Europe. However, the “new” form of Lyme disease has important ties to Connecticut and what “they” were experimenting with, and releasing into the environment. I tell that history in my books, and it is not the “Plum Island” or other conspiracy theories that we have endured for decades – stories that perhaps were meant to throw us all off track. If only I had known…

When I began my research into Lyme disease, the very first thing I said was “maybe everything that we have been told about Lyme disease is entirely wrong.” It seems that I was right. It was, and it remains wrong. In fact the history and the organisms are very different indeed. You can read about what constitutes the organisms of Lyme and Morgellons (which is a Lyme-plus infection). In 2009 when I attended the official premiere of the Lyme documentary UOS in Charlotte, NC, I met my first Morgellon’s patients and discussed with them their current treatments, which were the same as those used to treat Lyme disease. We spoke at length about their exposure history and other topics which were greatly helpful to me in determining the causative factors involved in Lyme/Morgellon’s. If I had only known…

Well in time I did (a great deal more than hypothetically) determine the origins of Lyme and Morgellon’s and a whole bunch of related human disease states – insect biowarfare of agricultural, veterinary, and industrial importance. This is not biowarfare in the sense that we think of weapons of warfare against human targets. However the history behind those kinds of warfare do bear commonalities with the insecticidal history I reveal in my books. It is urgent that people understand that one particular weapon of warfare, ANTHRAX, which is a soil bacterium, or I should say an “almost anthrax” in the form of Bacillus thuringiensis or “Bt” may have “allegedly” become part of the organism that is infecting millions of people on a global basis. I have to say “allegedly” because of well, conspiracy theorists and web visitors who reside in New Haven, Ft. Collins, or even Langley, Virginia.  If only I had known…

To learn about the connections between insect biowarfare and diseases of our day, please pick up any of my books “God Science,” “The Fourth Monkey,” or “The Singing Forest (Revisited).” Yes agricultural and industrial insecticides, wastes, and mutational events from genetically modified organisms (GMOs) are (allegedly) key components to Lyme, Morgellon’s, Celiac disease, Lupus, ALS, MS, Parkinson’s, Diabetes, and a host of other diseases. Learn what else you do not know about these topics in my book. The evidence is overwhelming but little published to date. Certainly no one else has connected the factors together in the manner that I have, in the overall puzzle of tick-borne illnesses. If I had only known…

The denial of infectious diseases on a global scale is probably the greatest tragedy known to mankind. I have known too many people who have died of Lyme disease, an illness touted by some as “hard to catch, easy to treat.” Several people I know have family members who committed suicide because of the kind of brain disarray and dysfunction that occurs; or because they could no longer endure the severity of pain and other symptoms that a supposedly “invisible” illness brings. The continued denial of patient disability benefits, insurance coverage for treatments; refusal of doctors to diagnose patients because of ignorance at the educational level; and long list of denials in many arenas is an ongoing tragedy. If only I had known…

Why is Lyme a four-letter word? The reasons it would seem, as I divulge in my books, would seem to indicate what my early web site visitors were probably worried about – that it would be discovered that those who hold the patent rights to the GM insecticides that are used agriculturally and industrially around the world, could not only be traced back to GM formulas; but they were also clearly causing human illnesses; and there was “nothing” that could be done this late in the game. It is too bad that the devastation which was first noticed to be occurring at a livestock level was not revealed as soon as it was “discovered” in the 1950’s. For if it had been, generations of people would have been spared an insidious illness. And I would not be writing this blog, nor would the books and other things I am about to reveal over the next year or two come to light. If only I had known…

In this month of May, I would ask that you and your families become better educated about the poppy seed-sized nymph ticks (since their tinier mite-sized larvae are nearly impossible to see); and the larger adult ticks which are small but noticeable. Please take great care to cover your skin when outdoors, especially in the woods, fields, or grass (and more so by water bodies). The best way to avoid Lyme disease is by education and prevention. It is the easiest thing to do. Wear tick repellents; check yourself after being outdoors and remove any ticks found. Immediately visit a doctor if any flu-like symptoms appear, even if you feel better a few days later. If only I had known…

If you happen to be among the less than 30% of people who display a bull’s-eye (circular) rash or any other kind of rash after exposure to a tick bite, then please get medical attention for as long as you have symptoms. Seek out a physician who has treated Lyme patients in the past, because they are typically more educated about proper testing and treatment options. Lyme disease and the “co-infections” which commonly accompany it, are life-threatening infections which quickly become persistent, systemic disease. They will infect and adversely affect every organ system in the body. Once it enters the nervous system, you are toast unless and until you get proper treatment. I don’t say this lightly, but in the interests of keeping things a bit light on a very dark subject, please take my word for it. If only I had known…

Please take measures to protect yourself, your family, your friends, and your pets. While pets can be treated with antibiotics, it is curious that many Lyme patients cannot have access to the very same inexpensive drugs that their veterinarians provide for animals. Meanwhile these same drugs are sold at inflated pharmaceutical prices to Lyme patients who can often not afford them, or who are told they are only “allowed” 30 days or less of these drugs; while their symptoms continue. When a physician in 2004 told me behind closed doors that he was “not allowed” to diagnose Lyme disease, it would be a huge clue to the political paradigm of denial that all Lyme patients encounter somewhere along the road to diagnosis and treatment. If only I had known…

When I tell people that yes I have actually had more than 100 medical visits and as many denials that I could possibly have Lyme disease before I was diagnosed properly, they hardly believe it. But my 16″ high medical record stack (and growing) supports these claims. It took 12-1/2 years before I was correctly diagnosed with Lyme, although at the start I had actually visited one of the world’s first dermatologists to diagnose and treat a Lyme patient in Wisconsin. He looked at my rashes and said “not Lyme.” I nearly died twice during my disease odyssey, once I was hours from death in a hospital ER on IV medications. “If you had not come in when you did, you would not have survived the night” said the ER physician. Why had I come in? I had seen an educational TV program about bacteremia (blood poisoning) when I was a child and had connected that distant memory with the red lines that were traveling up my arm. I felt like I was dying, and I can’t tell you what that feels like except that you KNOW you are dying. Why hasn’t there been educational program on TV for Lyme disease? If only I had known.

May is Lyme disease Awareness Month. In April of 2004 I had the WI governor declare May Lyme disease awareness month in this state. I have the proclamation still in my office. Unfortunately it is now 9 years later and not much progress has been made for all the advocates protesting and the books published...or so it seems. However, I have been fortunate enough to be placed in a position that despite being largely home bound, I have been privileged to be on the front lines of battling this insidious illness. I am working on multiple books about Lyme/Morgellon’s; my blood has been used to create novel diagnostic tests for tick-borne infections over several years; and I have the distinct privilege of working with many ILADS (International Lyme and Associated Diseases Society) physicians who are knowledgeable about diagnosing and treating tick-borne infections. I have also begun work as a researcher on another Lyme-related documentary film. I continue to provide research and writing services to legal entities, physicians, and others around the world; and to write, record, or otherwise get the information about Lyme and Morgellon’s out into the real world, under the radar of those who would visit my humble web site worrying about the cover of my latest Lyme book. If only I had known…

If only I had known about Lyme disease before I moved to Wisconsin. If only I had known that my family would all become infected with an illness that is easy to catch and hard to treat, would I have moved here? The answer is that had I known about Lyme disease, I could have prevented it. But since I did not know about it before making the move, the damage has been done. And like so many advocates, physicians, patients, families, and friends who are trying to raise awareness about Lyme/Morgellon’s this May, I fought back against the paradigm of denial and disinformation with everything that I had. We continue to stand before you as testaments to a visible but invisible illness. If only I had known…

We will continue to shout (or sing) with one collective voice that we are real people dealing with real disease and we deserve better. We will continue to work by whatever means is at our disposal to reveal the truth about tick-borne illnesses. And we will continue to urge everyone to become better educated and to prevent these infections before they become life-changing and life-threatening events. Thank you to everyone who advocates for tick-borne illnesses, no matter how sick (or well) they are. We will not be forgotten, which by the way, was the title of a poem I wrote in 2004 (The Forgotten) which told the story of what life is like living with Lyme disease. You can see it in my latest book “The Singing Forest (revisited)” available at http://www.allegorypress or at Amazon.

God bless those who are fighting against the denial of Lyme disease. We are making progress and one day soon we will win. Until then, our best insect bioweapons of warfare are EDUCATION and PREVENTION.

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2 thoughts on “Have You Heard About Lyme Disease? If only I had known…

  1. Have you read about the theories that the Black Plague is believed to have been a combination of bacteria/viruses? Anthrax is one of those suspected. Perhaps Borrelia is another one which worked in combination with the Anthrax and contributed to the Black Plague. Maybe this is why Phil Baker was assigned as Program Officer to both Anthrax and Borrelia investigations by the DHHS/NIH and NIAID… And just to add some “crazy talk” to my points, wouldn’t any scientist/researcher/MD love to be the one to find the answer to the Black Plague? What notoriety they would receive! Scarey thought since finding the answer to the Black Plague also means that someone could create a biowarfare weapon of that caliber as well.

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