The New York Times contacted me in September to write an Op-Ed piece for them about the chronic Lyme disease situation in the USA, which has been ignored for so long, and actually decried by medical groups and most recently by the media and renowned newspapers, such as Slate and The Washington Post, who brushed off this life altering infection as a “quack illness!”
Sadly, The New York Times ended up not running my piece, due to the accelerated presidential campaign news, becoming so central. However, I still have my powerful Op-Ed, and share it here now. I would love to see it make its way into a major publication or of course more blog sites. Please pass it along to all people and places you feel it will resonate with.
Thank you for supporting my work and efforts to illuminate the tragedies of this very REAL epidemic.
Lyme Disease – A Campaign Issue That Lingers
Katina I.Makris, CCH, CIH
While campaigning in Virginia Romney/Ryan were lambasted by reputable publications for their efforts promising to thwart Lyme disease, a growing epidemic, decried as a “ quack illness” by the uninformed. Yet, people are concerned for contagion in their own neighborhoods.
Since it was first recognized in 1975, this tick-borne illness has been highly politicized and contentious; wide-ranging symptoms making it difficult to diagnose and treat, earning Lyme ‘The Great Imitator’ moniker. The CDC and the Infectious Disease Society of America recognize acute Lyme- the achey, flu-like symptoms occurring right after a tick bite, but deny Lyme manifests as a chronic illness.
I’ve seen the devastating effects of chronic Lyme countless times, and have lived through it myself. On a June night in Massachusetts, a standing room only crowd; newspaper reporters, doctors, board of health members converge, stricken citizens voice their messages:
“ My health has deteriorated for 15 years, with apparent fibromyalgia, Bells palsy and dementia. Only last year did lab work prove I have had lyme all along,” an infuriated woman conveys. A single mom’s 9 year old son has been paralyzed. She says, “Famous hospitals had no answers. Fortunately, a savvy physician recognized the neurological form of Lyme and 9 months later on IV antibiotics, he is able to ride a bike again.”These are real people, with a real disease, who need real help. Lyme is not the ‘’illness du jour’.
The Lyme-causing bacteria, Borrelia burgdorferi, is cork-screw spirochete, akin to syphilis. If not treated promptly, the spirochete disseminates throughout the body, burrowing into soft tissues, joints, the nervous system and organs, triggering auto-immune responses and inflammation, resulting in diverse symptoms from vertigo to palsy to mental illness. Authorities agree that acute Lyme is arrested with simple, ample antibiotics, while long term forms brew a sea of controversy, as a documented consistent cure is nonexistent.
With commercial Lyme lab tests exhibiting a 65% false negative error rate, finding Lyme knowledgable doctors, who know to use one of the USA’s diagnostic specialty labs is difficult. Certain states have stripped physician’s licenses for long term antibiotic use, despite clinical evidence of success. On the other side of the fence, thousands of patients do not adequately regain their health, even after years of expensive multi-pharmaceutical combinations. These tragedies only underscore the necessity of more timely research and treatments options.
Most doctors are unaware Lyme exists outside of New England. But ticks, the prime vector for Lyme, are found everywhere in the U.S, having spread as a result of global warming and migratory bird patterns.
A woman from Tennessee told me she removed 14 ticks from her husband, 5 with bulls-eye rashes, after clearing brush. Their physician said “This isn’t Lyme disease, we don’t have that illness here. It is only found on Cape Cod.” Her husband went on to suffer crippling migraines, joint pain, and depression and can no longer work. But, as the world warms and different infected tick species move comfortably into new habitats, we should be especially alert.
In 2011, 35,198 new Lyme cases were reported by the CDC, representing a 40% increase from 2006. Additionally, the CDC acknowledges that the true number of Lyme cases is probably ten times higher, translating to an estimated 3,000,000 Americans shuffling through our health care system in various states of misdiagnosed illness over the past ten years alone. (Klempner et al. 2001). Mismanaged Lyme disease is over burdening the medical community, the insurance industry and wrecking lives.
Renowned Lyme specialist, Alan MacDonald’s 1980s studies proved that 70% of Alzheimer patients tested positive for the Lyme-causing spirochete, and that Lyme could cross the placental barrier, affecting the fetus. Yet, a 100% accurate borrelia culture test and more private research into this area could not get governmental financial backing. The position of the IDSA remained unchanged: Lyme disease was a short term infectious illness and any patient complaints made after the brief antibiotic treatment were non related or a ‘’post syndrome’. (Burrascano 2012)
Western society experiences a massive life-altering epidemic—HIV, polio, tuberculosis—approximately every 30 years. HIV exploded into our lives in the 1980‘s, when Lyme was still an unsuspected acute illness. Covertly, Lyme pirated its way into our backyards, as who ever saw the pin sized deer tick nymphs creeping across their back or scalp? Are we sitting in the crosshairs of the potential epidemic of the 21st century having ignored its ugly saber strikes? Tick borne organisms could be the lock and key ingredient to many of mankind’s chronic ills.
Having lived in heavily infested Massachusetts, Romney maybe more Lyme aware. Partisan rhetoric and media slant shouldn’t obfuscate basic medical funding for a disease that does not discriminate against any American; age, economic status or political party included. ILAD’S president Dr. Leo Shea sums up the situation, “ We witnessed HIV be disregarded by medical authorities as thousands died. We cannot afford to let Lyme destroy another generation.”
Katina I. Makris, CCH, CIH is the author of “” Out of the Woods, Healing Lyme Disease, Body, Mind & Spirit”, Elite Books, 2011.