"The Singing Forest,
A Journey Through Lyme Disease
Not long ago I came across a poem sent by a very wise, mature political activist. She is a tough and seasoned person with a strong business orientation, who really has seen it all. I was surprised to see the excitement in her email about a poem.
Then I read the poem. After the first few lines of the poem by PJ Langhoff, I started to find my eyes dilating and my brain expanding. My entire being was inhaling in a way that only the mystics strive to describe. I had had this experience before in the presence of very rare and very special people – individuals with a very rare prophetic genius.
I suppose that is how it felt to those who first heard the Rev. Martin Luther King as he was flowering into his calling. Or those who listened to Mother Teresa speak about "human dignity in the weak who manifest the image of God," as she walked among those who seemingly least displayed it in their utter weakness.
As I read the poem I started to shudder and shake, not with revulsion, but with the sense I was witnessing the birth of someone who possessed many rare gifts, which fused, and became a spokesperson for millions. PJ Langhoff is that person.
In the same way I could not stop reading her poem, I believe in time, many will not be able to pull away from her. In a time of much "data" and mere information, she offers a mixture of experience, wisdom, passion and clarity that only a prophetess can offer.
I have lived in areas in which walking to the mailbox through a well groomed lawn is a risk. Lyme disease and its many coinfections is something I understand personally, due to my experience with my immediate and distant family and friends. Loved ones with boundless energy, over years, could not rise from a chair. Others became irritable and excessively sensitive, and they struggled to treat their children, spouse, friends and coworkers with civility. Others developed various illnesses and psychiatric trouble. Many lost their advanced cognitive edge and struggled to hide their fogginess. A couple drinks made them into different creatures—strangers to those who loved them and knew them.
My sons were each told they were fine by well meaning pediatricians. One son had a single very specific positive Western blot band, which simply means he had antibodies to a protein only found in those exposed to Lyme disease. My treasured child decayed over half a decade, as physician after physician offered useless information. Even respected academic and Ivy League centers mocked and actually despised me for suggesting he should be considered for Lyme. I simply had no idea what was wrong, and was trying to keep an open and curious mind.
Finally, after he could no longer function reasonably in school, I did for my son what I had done for so many in my medical practice. I fired all of his useless narrow thinking physicians, and I decided to find his cure. Of course, while I had done this with many illnesses before for my patients, I knew nothing about tick-borne illness, because my infectious disease mentors knew virtually nothing about it—though they acted like they could give God some lessons. It is no surprise to me that a passionate and motivated housewife discovered modern Lyme disease, in a flood of local children in the backyards of so many sleepy Ivy League schools.
My rejection of the reflexive and impulsive "wisdom" of five-minute pediatric evaluations is not unique to me. By the time my family was riddled with various tick borne infections, many tens of thousands of patients throughout the USA, had come to the conclusion that mainstream medicine was repeating its common error. They had fogged out on early HIV/AIDS information, they had ignored and mocked the idea of an infectious cause of stomach ulcers, and they had mocked the merits of essential nutrients while exclusively embracing drug company grants and ideology. Having published on both the usefulness of medications and nutrition, I felt I was in a good position to criticize.
But when my son's SPECT Scan came back with 70% of his brain inflamed with infection from Lyme, and higher quality lab testing showed clear and diffuse Lyme disease proteins throughout his blood, I was not able to calmly criticize. My level of hatred was so intense, that I was unable to speak. "This is not possible." I thought. "How can so many academic centers miss this for so many years as this infection ate my son's body away?"
I had believed in the merits of education, and had valued the notion of the specialist and the expert, but I was seeing my son slowly die in the name of these false cults. All the years of visits to experts who were certain of nothing except that "he did not have Lyme disease," came flying through my mind in image after image, as if I was dying. And I was dying, because to me, being a father was my deepest joy and deepest fear. The notion of losing a child as both my beloved grandparents had done was my greatest fear, and it was happening. His school was worthless, and in the simplistic psychology of the 1950's, the teachers and administration, tried to "help us" with our parenting. My wife and I listened to them gauge us with their titanic ignorance, and finally I explained to the principle of one old leaky moldy private school the magnitude of his ignorance. He was not happy. And I was beyond fed up listening to clique masters with their simplistic answers. Could school staff really be this utterly ignorant and useless? Again, I saw that a belief in the wisdom of schools is often misplaced. We successfully home schooled him for a year.
Another of my dear children was then found to have four Tick-borne infections, including the malaria-like Babesia. This infection does not respond to the same medications used for Lyme, and is one reason some Lyme patients died in past decades.
Of course we tried to explain these medical issues to their physicians, school, and our friends, but they simply listened with glazed eyes. Indeed, some of these NE USA residents clearly had signs of psychiatric and cognitive Lyme disease themselves, but the first thing to go is insight, so we were talking to the walking dead or to those who covet simplicity over reality.
Slowly, it became clear that many of my extended family members had Lyme and their symptoms were as unique as their DNA. Some had eccentric weight gain, others had trouble finishing a task, another was suddenly struggling with addictions, and another had decreased memory and was rigid. Another had joint and muscle aches that they attributed to "old age." Nonsense.
My family tried to follow the principles of some outspoken Ivy League Lyme "experts" and the leading infection society. Both claimed Lyme disease was magically killed in 30 days. You understand they did not suggest treating 29 days or 31 days, but 30 days exactly. They never seemed to say what one should do with coinfections, perhaps since they rarely tested for them.
I read their flawed studies and watched my children struggle with the absence of improvement, and finally turned to those who actually treated Lyme, instead of magically and sometimes fatally just wishing it away.
It was at this time that I met dozens of physicians involved with ILADS, a collection of physicians and other health care workers who were committed to advanced, reasonable and complete Lyme disease treatment. They had all seen the status quo treatments, and seen them kill people. So their position was to treat Lyme until the signs and symptoms were gone. It is hard to imagine that this is seen as either controversial or insightful—treat until a return to baseline health. That this is actually debated is unfathomable. You see too many anti-clinicians caught with Ivy around their neck, long-term antibiotics for a zit is fine, but using it to relieve and improve chronic Lyme symptoms, to them, is an abomination.
One physician who had treated 9,000 children with Tick-borne infections was in the backyard of Yale. His name was Charles Ray Jones. He was a pediatrician who had walked with Dr. Martin Luther King in the early days, but then he turned his efforts toward medicine and pediatric cancer. After many discoveries and successes with cancer treatment, in the 60's, he slowly started to treat various Tick-borne infections. No one in the USA or the world has his decades of experience in pediatric tick-borne infections, and that experience helped to save the lives of my children.
And yet, despite his decades of sacrifice and service, he currently has to explain to the Connecticut state medical board and their "experts," who have a fraction of his experience, why he treated a child in another state who was found to be positive for Lyme disease on his lab tests without seeing her. It seems no one on the board has met a physician with a six month waiting list who works 12 hour days even when 78 years old and crippled? So because he decided to "do no harm" and prescribe an antibiotic to a sick symptomatic child on his six-month waiting list, he has to face a medical board with virtually no understanding or experience in pediatric Lyme disease.
Over the years, we have followed the advice of Dr. Jones and others in ILADS, and we have spent hundreds of thousands of dollars in the treatment of our immediate family, our wider families, friends from all over the USA who became infected, and to strangers who have received free care and had bills forgiven since they could not afford medical care or medication.
Currently, my children are largely recovered and enjoying a life without fatigue, sadness, memory trouble and aches. I am providing ongoing treatment since they are not fully cured. I am also working to help restore organs that may have been weakened by their undiagnosed infections. One of my best friends died quite suddenly of suspected Lyme disease, so I work to strengthen their bodies, so we will not be faced with their surprise deaths, something that is not rare in the Lyme community.
As a research and clinical physician, I treat patients from all over the USA who have been unable to find a cure for their illness. Most have been to between five and forty smart and experienced physicians before me. Unfortunately, due to a lack of understanding from their sincere physicians, some of these individuals are ill from tick-borne infection like Lyme, and the routine labs used to test for it are of such poor and inferior quality, that even patients with the rare bulls-eye rash come up negative after one or more months. In other words, after the body has had plenty of time to make Lyme antibodies.
Most physicians do not realize that Lyme is present in every part of the United States, and that routine cheap labs only detect a limited number of Lyme strains. I often see individuals whose Lyme has been missed and who suffer with seizures, strokes, "ALS," embolisms, tics, mania, migraines, MS, autism, and heart damage. Sometimes I offer information to ill individuals and other physicians and they react with disdain to my gift. "They are too far-gone," some might say. I hope not. But many people have lost their ability to have insight into their own body and brain changes. Some are too lost because Lyme has affected their mind and they cannot consider other opinions. Lets hope those you love are not too far-gone.
I hope you are not too far-gone. I hope you can open your mind and heart to the exceptional material offered by one of medicine's new lay prophets. I offer this book to you with my strongest endorsements, knowing that this is important and well-written information that will empower and strongly encourage many people. You will also see that you are not crazy. You are not alone.
James Schaller, MD, MAR
Tampa and Naples, Florida
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