From Alpha to Omega: Solving the Mystery of Lyme and Chronic Disease

Like birds flocking, 186 people traveled from Massachusetts, New York, other New England and MidAtlantic states, and across the U.S., Canada, and Spain to the Omega Institute in Rhinebeck, NY to learn, share, heal and fight Lyme disease. Because Lyme mimics many common chronic diseases, the weekend was designed to help people who go from doctor to doctor with chronic, debilitating symptoms, looking for answers and effective treatment.

Now in its second year, Dr. Richard I. Horowitz of Hudson Valley Healing Arts Center in Hyde Park, NY led the workshop with Katina Makris, CCH and CCX, and Tom Francescott, ND. Dr. Horowitz wrote the book on Lyme disease: Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease. He has made the rounds speaking at major hospitals.

What did we learn? As much as we could absorb, with hours of talks and scores of slides covering everything from Lyme spirochete strains (Borrelia burgdorferi et al.), the latest research, lab tests, co-infections and coexisting conditions to treatment strategies, from the right antibiotics to complementary strategies helpful to those with persistent infections. Lyme is a spirochete that has a lifecycle in its host (whether a tick, deer, chipmunk or human) so if not caught early, the parasite can be harder to treat.

We also learned how to share, open up, laugh, cry, and relax in the company of strangers who quickly became friends in the shared understanding of serious, longstanding, and often denied illnesses. The setting was rustic and beautiful, the food healthy and excellent, there is a lake, a sauna, and spa and wellness services available for those who are inclined for a little extra help.

The facilitators were mindful about building a sharing community, as psychological healing and shared connections with others with similar experiences are essential to those with chronic illnesses. This is especially important when you are misdiagnosed, ineffectively treated, or ostracized as a malingerer because “you don’t look ill,” or “you have been treated according to the guidelines,” or you have been told it is “all in your head.”

As you recover, you never quite return the same way and to the same place you left, because the experience changes you, you are older, and it has taken a toll on your family and loved ones, friends and activities, employment and income, and retirement funds and life savings.

Federal agencies were largely spending money elsewhere and ignoring this growing epidemic, and backing dated guidelines and testing procedures. Many reported seeing specialists who on were at a loss, some dismissive and insulting. The treatments that were supposed to work may have worked for others, but not enough for you.

Smaller workshops gave us choices to learn more about co-infections like Babesia, Bartonella, and Powassan with Dr. Horowitz — truly hair-raising, but to be forewarned is to be forearmed. There are troubling rates of coexisting conditions such as mercury and mold toxicity, as there is a complex dance between the immune and neurological systems. Presenters also covered integrative treatment strategies, as each person is a symphony of interconnected systems.

At night, there was music, and sharing. Where else could you hear a guitarist singing ballads about Lyme disease? Who knew the woman from LA, an aging Brahmin Beauty, would be as funny as Lily Tomlin telling the story of her impossible journey from successful professional to bedridden, broke and broken with Lyme? How could she possibly get to the Omega Institute in Hudson Valley, NY because she had Lyme? She could hardly get up in the morning, turn on the computer, register until she applied for and received a scholarship, or book a plane ticket until an old friend volunteered to pay for it. But she did.

Those with Lyme can and will do anything to get healthier again, and support and help are essential along with antibiotics and insurance coverage for tests and treatments. What struck most was how sick all of us were and some still are; how hard it is to fight persistent illnesses in the face of dated and inappropriate guidelines, disbelieving doctors, and unhelpful insurance companies. Yet the human spirit, hope for recovery, and progress toward, it will not be denied.

Why is Lyme spreading so rapidly? Dr. Horowitz gave some sobering clues: ticks can spread on birds, so it is airborne. The CDC just revised its estimate of US cases from 30,000 to 300,000. It is ubiquitous in the Northeast. This estimate may be off by a factor of 10 to 100, as it seems almost every family has experience with Lyme disease. And too many have some experience with mercury poisoning and/or mold toxicity. Sadly, many do not know it yet. They are just struggling with premature aging and a range of chronic diseases, or kids with issues and mystery symptoms, or aging parents needing all kinds of care and caregiving for cognitive, illness, memory, mental status, and/or mobility issues.

Living Well with Lyme: is it an oxymoron, or an apt description? I came to the weekend thinking we need a War on Lyme, with carpet bombing of permethrin, seasonal prophylaxis like for malaria with doxycycline monohydrate, an extended hunting season on deer and chipmunks, and to learn how to strengthen our immune systems so they have a better chance fighting this off based on the gene lottery. Perhaps we still need all of these. Perhaps the latter will do.

At the same time, I left the weekend with a broader perspective and even a peace with my health challenges. They may not disappear completely, but wax and wane and need periodic attention. We learned that health is a journey and not a destination. This was a life lesson.

Living Well with Lyme. We learned how to do that together, as individuals, as members of our families, and as a community. Where else could a learning weekend come to a close with a tick song — animated, no less — with guitar by Darryl Hall of Hall and Oates, and singing by the indefatigable Dr. Richard Horowitz? Only at Omega.

Laura Henze Russell is the Principal of Precision Research and Communications, and Hidden River Health Challenge. She is launching a call for Medical and Dental Device Safety Urgent Reform, MEDDSURGE

Precision Research & Communications: Precision Health.

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