The truth about Chronic Lyme Disease is harsh, frightening, and at this time somewhat hopeless, as AIDS was a couple of decades ago. I’ve observed that though Chronic Lyme Disease has been around for decades it’s pretty much not understood by most Americans. I know that AIDS hasn’t been cured but it is now rarely deadly and is treated as a chronic condition similar to diabetes. Some day this will be the case with Chronic Lyme Disease.
Recently one member of our Wednesday Wheeler bike club, who hasn’t been riding with us lately, sadly wrote about the announcement I sent:
“It really struck home since it sure seems like I am the same boat as your daughter — obviously there is no treatment since I know you must have pursued all avenues. It was pleasure knowing you and cycling/hiking etc.”
Unfortunately he now has a debilitative disease that the many conventional M.D.s he has seen failed to diagnose, which he suspects is Lyme.
I’ve decided to send this short essay (below) on Chronic Lyme Disease to my physician and health professional friends, most of whom are not Lyme-literate but might be in a better position to contribute to attaining the critical mass needed to cure this evasive and dreadful cluster of associated tick-born diseases. I’ll also send it to those of my friends expressing their sympathy on my daughter Wendy’s death, who may have told me that they didn’t know Lyme could be fatal.
Lyme disease is the fastest growing reportable infectious disease in the U.S. based on an analysis of CDC reported cases, which are recorded on a passive, not mandatory, reporting system. The CDC has acknowledged that reported statistics greatly understate the true incidence of the disease. The actual number of new cases probably exceeds ten times that number, or about 200,000 new cases per year. Massachusetts ranks fourth nationally in incidents of reported Lyme disease cases, behind Pennsylvania, New Jersey & New York.
A physician friend of Wendy’s who has been struggling successfully with Chronic Lyme Disease is planning to write a book and I agreed to collaborate with her on a chapter devoted to Wendy and her painful journey.
Thank you again for your friendship and your sincere expressions of sympathy. The world has become colder and lonelier for me and the many others, friends and family, who knew and loved Wendy.
The Buried Truth:
How is it that a ‘difficult to catch and easy to cure’ disease can claim so many lives? The answer is, at once, so simple yet extremely complex. It is this very dilemma that keeps the truth buried.
The simplicity relies upon the fact that Lyme and other tickborne associated diseases can be lethal. They are stealth pathogens that invade the body and wreak havoc on every inch of its systems. They know no boundaries, pass through all barriers and essentially use the patient’s own immune defense forces as ammunition against them.
The complexity lies within the bacterial, viral, protozoan or microbial ability to become covert and therefore evade the most common diagnostic criteria and most standard treatment protocols. ‘Lyme disease’ for most infected patients is rarely only the bacteria known as Borrelia burgdorferi. We are now finding that most patients harbor a collection of multiple diseases that can be contracted by a single encounter with the most notorious vector- The Tick.
We are also finding that ticks are not the only vectors that carry these multiple diseases. Mosquitoes, lice, biting flies, fleas, chiggers, mites and sand flies are only a few of the known carriers. We also know that some tickborne diseases can be passed from person to person via sexual transmission, by congenital means, through blood transfusion and with organ transplants.
Animal to human transmission is also reported via exposure to infected animals such as squirrels, dogs, cats, birds, sheep and cows among others.
Tickborne diseases claim lives in many ways. The length from infection to fatality varies widely with the nature of each disease and with each patient. Some diseases are quick to claim lives and others linger at length until the patient’s body gives in to the devastation or the patient’s spirit gives in to the desperation.
It is not uncommon to see another cause of demise listed on a death report for the tickborne disease infected patient. Once the body becomes immunocompromised and multi-systemic infection occurs, the door is left wide open to other possible conditions that complicate the patient’s original diagnosis and prognosis.
Even under the most optimal conditions: with a swift diagnosis, the best of possible protocol plans and attentive physicians, the eradication of tickborne diseases is subject to the individual’s response to treatment.
Unfortunately, most patient care does not fall into the optimal condition category. Many go for weeks, months, years and decades before a proper diagnosis is made and a treatment plan is initiated.
These patients have endured dozens of physicians still clinging to misinformed protocols backed by misguided political forces. They have also been ravaged by inconceivable insurance nightmares that have led to extreme social, financial and personal loss.
The truth of what plagues their lives has been lurking underneath multiple misdiagnoses, indescribable pain to mind, body and spirit, denial of the patients’ own experiences and the continued prevalence of a simple myth that pleads to be uncovered and recognized for exactly what it is…The Buried Truth.
© 2006 The National Lyme Disease Memorial Park Project