Lyme Afflicted Entrepreneur Seeking to Raise Awareness About America’s Hidden Epidemic
Martinsburg, WV- Arthur Ebeling believes that Lyme disease is one of the great health crises of our time. Ebeling, a former collegiate athlete, has been under the assault of the disease for over a decade. A very late diagnosis in 2010 had allowed the infection to spread throughout his body including his brain, heart and eyes. Not only did he ultimately test positive for Lyme disease, but also co-infections including babesia and bartonella. The presence of co-infections is increasingly characteristic of Lyme patients, Ebeling admonishes. Since his diagnosis in 2010, Ebeling has been battling back after the disease nearly took his life; he is currently receiving treatment at the Zhang Clinic in New York City, headed by Dr. Qingcai Zhang. The Zhang Clinic is recognized for managing the most difficult of Lyme cases and is noted for its integration of Western medicine and traditional Chinese medicine (TCM), precipitating a philosophy known as modern Chinese medicine. The Zhang Protocol, a comprehensive herbal formula created by Dr. Zhang, is endorsed by Dr. Andrew Weil for the treatment of Lyme disease, particularly latter stage, more difficult cases. It was through Dr. Weil’s website and endorsement that Ebeling discovered Dr. Zhang. Ebeling insists that the Zhang Clinic has saved his life and he is optimistic about his recovery.
“To help others afflicted with Lyme brings a measure of peace and reconciliation to my own struggle,” says Ebeling.
He is channeling that same will in an effort that he hopes will fundamentally change the way Lyme disease is treated and diagnosed. He has established the Lyme Warrior Foundation,www.LymeWarrior.org, has partnered with the Zhang Clinic and is working on a book to be released this December, “Lyme Warrior: Healing Lyme Mind, Body, Spirit.” The foundation’s directives include research efforts to improve early screening efficacy as well as advance treatment options, promoting preventative practices and education about the disease and finally offering an information resource for those afflicted. Ebeling believes in promoting a message of empowerment and also educating patients on what lifestyle practices they can assume to assist recovery and restore health.
The disease, named for early recognized cases in Lyme, Connecticut, is caused by a bacterial infection, borrelia burgdorferi. Borrelia is most commonly communicated by ticks. Ebeling explains that Lyme disease is the fastest growing infectious disease in the U.S. and that perhaps as dangerous as the disease itself is the disinformation surrounding it. Ebeling notes that the disease is poorly diagnosed and treated both because of ineffective diagnostic tests and also the attitude regarding the disease within the medical establishment. “Many tests are antibody based,” says Ebeling. “The human body will likely not produce antibodies until 6 weeks post infection. By the time the tests may be sensitive, the infection has likely already disseminated. Some people are not symptomatic in early stages, many do not present the characteristic erythema migrans rash. Thus, early diagnosis can be quite challenging. As the disease progresses and involves more systems, it can imitate many other illnesses including MS, ALS, Parkinson’s, fibromyalgia among others. This obfuscates the diagnosis further and makes the disease far more complicated to treat. The longer the infection persists, it is more likely to disseminate not only through the blood stream but retreat from the blood stream into deep tissue and organs including the brain and heart. In this way it can elude antibiotics and also confound screening tests. Because of the clear challenges to effective diagnosis and treatment, a more open posture is needed within the medical community. A reliance on current tests and current treatment guidelines propagated by the Infectious Disease Society of America is a grave disservice to those suffering; a moral imperative exists to reconsider the way the disease is managed.”
When detected early, Lyme can be treated swiftly and effectively with antibiotics such as dioxicyclin. Yet as Ebeling noted, because early diagnosis is difficult to achieve and frequently missed, many are treated in later stages. Many Lyme patients, Ebeling believes, are untreated, misdiagnosed or undiagnosed altogether. A large number of the patients treated in these later stages are not cured or must return to antibiotics after symptoms return; Ebeling notes the disease can become a chronic affliction, a fact that remains passionately debated within the medical community. Because of this, many patients encounter difficulty in accessing the care they need. Often, after their initial treatment course is expired, they are denied further treatment despite their symptoms. Doctors that agree to offer long term care are sometimes sanctioned by insurance companies and can even lose their license to practice. This division was explored in the award winning documentary, “Under Our Skin.”
Poor screening tests are largely responsible for the chronic Lyme debate. If tests fail to see it, some doctors have a difficult time acknowledging that it is present, despite a patient’s clinical presentation and despite the understanding that the tests themselves are not always accurate. Ebeling insists that current treatment courses do not last long enough and are not sufficient in resolving the disease. “Sadly, patients are penalized for the oversights of the IDSA and the modern medical establishment,” says Ebeling. “Lyme can unequivocally become chronic. We have identified certain factors that contribute to chronic Lyme: late diagnosis allowing the disease to become multi-systemic and create a host of secondary complications including autoimmune disease, the morphogenesis of borrelia into antibiotic-resistant cyst and L-forms and also the presence of co-infections, some of which do not respond to antibiotics, or are overlooked and in tandem with Lyme infection, can overwhelm immune defenses.”
As the preponderance of evidence continues to support Lyme’s ability to persist after antibiotic therapy, especially in latter stage cases, Ebeling believes solidarity within the medical establishment will be achieved. That is part of what he hopes to realize through his leadership at Lyme Warrior. Ebeling not only asserts that the length of treatment is not sufficient but also the method itself is not comprehensive. “Particularly for those suffering in later stages of illness, conventional Western medicine does not offer complete resolution of the disease. There are many deficits in the way Lyme is currently being treated not only in the length of treatment, but the intrinsic treatment philosophy,” says Ebeling. “I experienced this firsthand, having not responded to extensive antibiotic therapy. Lyme requires a more complex treatment method that not only includes bactericidal and antibiotic intervention but also mechanisms that bolster immune function, repair damaged tissue and promote detoxification. Patients, particularly those suffering the latter stages of illness and chronic infection, often cannot be restored by antibiotic therapy alone and the infection often returns. Excessive or long term antibiotic therapy communicates unique risks and with dubious efficacy. Lyme disease really presents an opportunity for Western allopathic practitioners to consider a wholesale shift in the way chronic disease and infectious disease are managed.”
Perhaps even more alarming is as the protracted medical establishment remains gridlocked in debate, Lyme is becoming more and more prevalent. In fact, more people suffer from Lyme disease than from AIDS and West Nile Virus combined. The CDC formerly reported 20,000-30,000 new cases annually. Ebeling and many members of the Lyme community vehemently disagreed with these numbers. Recently, the CDC amended these estimates to reflect 300,000 new Lyme cases annually, a tenfold increase. While Ebeling maintains that the CDC estimates have long been far short of actual Lyme incidence, he is encouraged that their recent announcement ushers hope of greater research subsidy and improved awareness. Ebeling personally believes Lyme incidence could still be much higher than even the CDC’s updated figures.
Ebeling must continue to manage his own recovery. For him, the Lyme Warrior Foundation is part of his healing. “To help others afflicted with Lyme brings a measure of peace and reconciliation to my own struggle,” says Ebeling. And much like his own recovery, he is optimistic about the future for Lyme patients. “I believe in the work we are doing as well as other great organizations such as the ILADS and Lyme Disease Association. I also believe in modern medicine, I believe in science, I believe in the many superb doctors and medical practitioners in this country, on both sides of the debate mind you. We have not answered all of the riddles of borrelia and the Lyme complex yet- but I know that we will. The attitude towards Lyme is changing rapidly; more and more research will be conducted, more will be learned and I believe ultimately that there will be solidarity and full cooperation within the medical community.”
The Lyme Warrior Foundation is in part looking to galvanize a grassroots involvement. The foundation allows anyone to establish their own community chapter as well as raise awareness through events and fundraisers. Ebeling has also started speaking about his experience with Lyme. Ebeling hopes that Lyme Warrior will play a critical role in advancing Lyme research in the future. The foundation is currently seeking corporate sponsors, volunteers and research partners.