by Annie Courtens

Alyssa Powers started getting sick in 2002 when she was eleven years old. She was tested for “pretty much everything,” she said, including fibromyalgia, multiple sclerosis, brain tumors and leukemia. When all the tests came back negative, doctors told her to call a psychiatrist. After two years of suffering symptoms, she finally found the culprit: Lyme disease. Her doctor wrote her a prescription for twenty-eight days of antibiotics and sent her on her way.

Lyme disease, a tick-borne illness caused by the spiral-shaped bacterium Borrelia burgdorferi, afflicts over 300,000 Americans every year, according to the U.S. Centers for Disease Control. The standard protocol for diagnosed patients, as established by the Infectious Diseases Society of America and most recently updated in 2006, is the four-week regimen of antibiotics that Powers received. Experts agree that for most sufferers who catch it early on, this therapy is quite effective.

But for up to 20 percent of patients, the four-week antibiotic treatment fails, and troubling symptoms continue. While the reason for this remains largely unknown, the speed of diagnosis and treatment appears to be a critical factor. “Treatment failures or relapses are reported with all current regimens” of antibiotics, states the International Lyme and Associated Diseases Society (ILADS), a non-profit forum for medical professionals, “although they are less common with early aggressive treatment.”

Powers, who was diagnosed and treated two years after her initial infection, is part of the 20 percent of Lyme sufferers in whom the standard antibiotic treatment failed. Aching pains, arthritis in her joints, killer migraines, and trouble concentrating plagued the once-active sports star through high school and college. In March 2013, she suffered a concussion and her symptoms escalated, she said.

Over the course of a year, she went from playing soccer six nights a week and running each morning to being in a wheelchair unable to walk, drive, or work. She currently sleeps fifteen to nineteen hours a day, as her Husky, Achilles, patiently awaits her recovery.

Extended Antibiotic Therapy
With many cases of Lyme disease unresolved by the standard treatment, some doctors appear to be veering away from the recommended guidelines. In three nationwide surveys from 2009, 2011 and 2012, researchers found that 56 percent of people diagnosed with Lyme disease were treated with antibiotics for longer than the recommended four-week regimen. The data, collected by researchers from the CDC’s Division of Vector-Borne Diseases, analyzed self-reported diagnoses, treatment and recovery among Lyme disease patients through public surveying and separate analyses of insurance bills and lab tests.

cdc data

One of the Centers for Disease posters
showing the results from a nationwide
survey on Lyme disease treatment.
Over 56% of patients are treated with
antibiotics longer than four weeks.
Photo credit: Centers for Disease Control

Powers is one of them, too, currently undergoing long-term intravenous treatment in Tampa, Florida.

One rationale for this extended antibiotic regimen is the theory that long-term symptoms are the result of a continuing infection. As one doctor told Powers, her concussion “woke the bacteria bugs up.” It’s a controversial theory, because diagnostic tests generally cannot find the bacteria in these patients. This is because the antibodies to the Borrelia are no longer present in the body. And the most common test, the ELISA (Enzyme Linked Immonosorbent Assay) is only 55% to 90% sensitive to locating these antibodies which makes it even more difficult to diagnose.(See Jennifer McGreevey’s story, “New Research Aims to Improve Lyme Disease Diagnostics.”)

However, new research supports the notion that the Borrelia bacteria can persist even after standard antibiotic therapy. In a study conducted at Columbia University, Borrelia bacteria passed from mice to ticks, even after the mice had been treated with a full course of antibiotics, as Columbia University Lyme disease expert Brian Fallon reported in a March 2014 lecture. While “it’s an evolving story,” Fallon told reporters from the Poughkeepsie Journal, “no longer do they [the academic community] think that the antibiotic treatment necessarily wipes out all the spirochetes,” he said, referring to the spiral-shaped form of the bacterium.

Nevertheless, extended antibiotic therapy to wipe out lingering Lyme bacteria may be both dangerous and ineffective, studies have shown. The National Institute of Allergy and Infectious Diseases has funded a handful of placebo-controlled clinical trials (in 2001, 2003, another in 2003, and 2008) on the effectiveness of prolonged antibiotic therapy in patients suffering from long-term Lyme symptoms. These trials have found no evidence of significant benefits from the long-term therapy. In fact, some of the participants in these trials suffered adverse effects, including, in the case of one woman prescribed intravenous antibiotics, death.

Some experts such as Dr. Raphael Stricker dispute the results of these studies, citing evidence from less rigorous, uncontrolled experiments showing that long-term antibiotic therapy works, and noting that its effectiveness may depend on the timing of the treatment.

Alternative therapies

Heather Bruntil and her family sought conventional treatment for Lyme disease when their household of four simultaneously came down with the tick-borne disease after a hike one early spring a few years ago. When that didn’t work, Bruntil said, “I battled with my insurance company to cover IV antibiotics.” Still, even after other extended antibiotic therapy, the family struggled to get better.

Bruntil turned to a book called Healing Lyme by master herbalist and psychotherapist Stephen Buhner. The book advocates using potent herbal medicines and supplements, in particular andrographis, Japanese knotweed and Cat’s Claw used in the core protocol. Andrographis, or green chiretta (Andrographis paniculata), has been used for centuries in China and India and may be beneficial for Lyme symptoms because it is considered anti-spirochetal, and is believed to enhance immune function, protect heart muscle, act as an anti-inflammatory (for arthritic symptoms) and enhance and protect liver function. Cat’s Claw (Uncaria tomentosa, U. guianensis) is a woody vine commonly found in the Amazon rainforest. It may be useful in treating Lyme symptoms such as arthritis and muscle pain, by enhancing the immune system. Japanese knotweed (Polygonum cuspidatum) is an invasive species  in New York state. It’s believed to be useful in fighting off the spirochetes that cause Lyme, as well as providing anti-inflammatory properties by protecting the body from endotoxin damage and reducing Herxheimer reactions.

All three of these herbs, expert herbalists say, can be taken either alone or in combination with antibiotics to treat Lyme. After learning about Buhner’s protocol, Bruntil decided to get rid of all the pharmaceuticals her family had been using and follow his recommendations, even though Buhner himself suggests that the herbal protocol should be used alongside antibiotics to achieve an optimum outcome.

Bruntil discovered that many of her symptoms, which she thought were caused by her Lyme disease, were also in part due to the antibiotics. She had to “repair all of the damage done by them [antibiotics],” she said. The long-term antibiotics had resulted in painful side effects, particularly on her gut flora. Since transitioning away from antibiotics and focusing on herbal remedies and diet, Bruntil and her family have finally recovered. She is now an herbalist and helps guide others suffering from Lyme in the New Paltz area.

While Bruntil did her own research to find the best remedies for her and her family after antibiotics failed, many naturopathic or homeopathic practitioners, such as Rhinebeck’s Dr. Tom Francescott, offer personal consultations for long-term Lyme sufferers.

New York State does not license naturopaths as medical professionals, however, fifteen other states do. Francescott earned his doctorate in Naturopathic Medicine from Bastyr University, one of four medical schools in the country that specialize in evidence-based natural medicine. He treats patients suffering from a range of diseases, from Lyme to Crohn’s disease. He offers treatments based on homeopathy, herbal medicine, craniosacral therapy and other alternative medicines. Naturopathic medicine involves creating a personalized treatment for each individual patient, which Francescott believes is especially important with Lyme disease, since it affects each patient differently. “A tick could bite two different people,” he says, and each person would have “complete different reactions.” Francescott recommends pairing his therapies with antibiotic therapy, speculating that an integrated and comprehensive approach may be the most effective in fending off the infection especially if the Lyme is caught late.

One of the most popular advocates for alternative therapies for Lyme disease is Dr. Richard Horowitz, author of Why Can’t I Get Better? Solving the Mystery to Lyme and Chronic Disease, who claims to have treated more than 12,000 Lyme patients. One of the therapies that Horowitz uses in his practice involves a protocol developed by Dr. William Cowden, an internist and cardiologist specialized in integrative medicine. The “Cowden Protocol” uses various herbal extracts such as Samento, Banderol, Cumunda, Quina, parsley, and Burbur that are believed to act as broad-spectrum remedies against Lyme, exerting antibacterial, antiviral, antiparasitic and antifungal effects, as Horowitz writes in his book.

NutraMedix, a company that sells the Cowden treatment, provided the herbs to Horowitz to administer in a six-month clinical trial with his patients, studying the efficacy of the herbs versus standard antibiotics.

According to Horowitz, the Cowden treatment improved acute and chronic Lyme symptoms in over 70 percent of the patients in whom he prescribed the full protocol. A follow-up study was conducted by researchers from the University of New Haven. They tested the effectiveness of Samento and Banderol extracts against the most commonly used antibiotic in Lyme disease, doxycycline, on several different forms of Borrelia burgdorferi, including the spirochetes, round bodies, and biofilm-like colonies they form. (See John Carey’s story, Biofilms: The Culprit in Chronic Lyme). The results showed that the herbal extracts were effective in eliminating or dramatically reducing all three forms of the bacterium whereas the doxycycline  had a significant impact only on the spirochetes.

A Personal Journey

Deborah Alecson, who also went through the frustrating process of not being diagnosed promptly, had to eventually leave her job as an autism specialist to focus on healing her Lyme disease. She received antibiotic treatment, she took herbal remedies, and she was treated with homeopathic medicine. But she says it wasn’t just the medicine that helped her get back on her feet.

“The most important aspect of healing from Lyme and all diseases is the spiritual,” she said. Alecson, a peaceful yet tenacious woman nearing sixty, contracted Lyme in 2009. To get rid of it, she dedicated as much strength and energy as she could into spiritual work and daily swimming.

Too many Lyme disease patients, such as those she met in a Lyme disease support group she held in her home in Massachusetts, allow the “disease to become their identity,” she said. No matter how much money they spent or experts they saw, she said, their recovery did not come any faster or easier.

For many patients with long-term Lyme symptoms, patients should ask themselves, “what is the spiritual aspect to this illness” Franscescott said. He believes that those who suffer Lyme and other diseases should pay attention to the “whole body” including the emotional side, adding, “you can give them information but they have to find their way with support.”

Alecson eventually recovered sufficiently to launch into a new career as a professor teaching thanatology, or the scientific study of death. But despite feeling better, she realizes that her symptoms could come back at any time. “Am I spirochete-free?  I don’t know. Will I develop a disease process that eventually kills me, due to either the Lyme or the treatment? Who knows?… I’m not saying I’m cured or 100%,” she said, “but I’m totally humbled.”

PT

Alyssa Powers is now going to physical therapy a few times a week where she is rebuilding her strength to be able to walk again on her own.
Photo Credit: Lacey Powers

Follow Alyssa’s journey to recovery on Facebook