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Chronic Lyme Debate Comes to the South Fork

Posted on 26 June 2013

By Kathryn G. Menu

Robbie Vorhaus has a passion for gardening at his North Haven home, cultivating organic produce with his wife, Candace. But these days, preparing for this pastoral tradition is almost like preparing for battle. Dressing for the garden now entails a full-body spray of tick repellent before dressing in long pants, long sleeve shirts, closed toed shoes, gloves and even a bandana.

Afterwards, he tosses his clothing immediately into a dyer and takes a shower. Even then, there is usually one or two ectoparasites that have somehow found their way through his layers of protection.

Sometimes he wonders if he should be gardening at all.

Officially diagnosed with Lyme disease, Vorhaus said so far this season he has picked over 100 ticks off himself. Last season, he counted 100 in total, the year before 25. In 2010, he only counted 10 ticks.

This was what brought Vorhaus to Mara Williams, a nurse practitioner, author of “Nature’s Dirty Needle” – a book dedicated to Chronic Lyme Disease (CLD) – and founder of Inanna House, a not-for-profit healing center for CLD in California.

And through Vorhaus, Williams has come twice to Sag Harbor to talk about CLD, the challenges she believes those who face tick borne illnesses face and why she believes there is a light at the end of the tunnel.

Last weekend, Williams drew dozens to lectures at both the John Jermain Memorial Library and the Sag Harbor Presbyterian “Old Whalers’” Church.

For Williams, the distinction between acute Lyme disease and CLD is a critical distinction – and one the entire health care community is not yet ready to stand behind.

According to the Centers for Disease Control and Prevention (CDC), Lyme disease is caused by the bacterium Borrelia burgdorferi, a spiral-shaped spirochete, transmitted to humans through infected blacklegged ticks. Typical symptons, according to the CDC, include fever, headache, fatigue and erythema migrans – the characteristic “bulls eye” rash most families are warned to look out for as an indictor of contracting Lyme.

According to the CDC, if left untreated Lyme can spread to joints, the heart and the nervous system. It is diagnosed base on symptoms, physical finds like a rash and exposure.

“Patients treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely,” according to the CDC. “Antibiotics commonly used for oral treatment include doxycycline, amoxicillin, or cefuroxime axetil. Patients with certain neurological or cardiac forms of illness may require intravenous treatment with drugs such as ceftriaxone or penicillin.”

The CDC notes on its website that 10 to 20-percent of patients, in particular those diagnosed later, may have persistent or recurrent symptoms despite antibiotics. They refer to this as “post-treatment Lyme disease syndrome or PTLDS.

While the CDC and the Infectious Diseases Society of America (IDSA) contend patients should be treated for Lyme disease with a recommended course of just two to four weeks of antibiotics, the CDC does acknowledge there are those with long-term effects.

“Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection,” states the CDC of PTLDS, noting similar “complications” or “auto-immune” responses are known to follow other infections including Campylobacter, Chlamydia and Strep throat. The CDC notes some health care providers tell patients they are symptoms as a result of a persistent infection with Borrelia burgdorferi. The CDC states recent animal studies have left questions that show cause for more research; however, it adds regardless of the cause of PTLDS, “studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo.”

It adds that long-term antibiotic treatment for Lyme disease has been associated with series complications.

In addition to Lyme disease, Anaplasmosis, Babesiosis, Ehrlichiosis, Rocky Mountain spotted fever, Richettsiosis and Tularemia are other tickborne diseases found in the United States.

Williams, like many practitioners handling CDL cases, disagrees with the CDC and the IDSA in their definition of CDL and how it should be treated.

Williams has not only written a book on the subject, but is also planning to open the not-for-profit center, the Inanna House, in California to aid those with CDL.

According to Williams, and others who stand behind the CDL cause, it is an affliction not limited to the Northeast, but a world-wide epidemic. CDL is defined as being ill with Lyme disease for more than a year, and the longer someone carries the illness, the greater chances secondary illnesses – or co-infections in the form of bacteria, parasites or viruses – will occur. These can include Babesia, Typhus, Ehrlichia, Epstein-Barr virus, Fibromyalgia and Bartonella.

Other systems in the body – the immune system, the hormonal system and the autonomous nervous system – said Williams, stop functioning in a healthy way, leaving those seriously afflicted with CLD sensitive to everything, including environmental like exposure to chemicals or toxins as well as stress.

But while Williams disagrees fundamentally with the way CLD is diagnosed – or not diagnosed – and treated, her main goal is to provide people with increased awareness about prevention, the reality that treatment for CLD is available and works and that there is a light at the end of the tunnel for those who have suffered for so long.

The International Lyme and Associated Diseases Society (ILADS), counter to the IDSA, is a group of healthcare professionals working on building evidence based medicine around their belief – and Williams – that current testing for Lyme is inadequate, the disease is prevalent without the instance of a rash, can be chronic in nature and needs immediate, and sometimes long-term care.

Williams and the ILADS recommend those bitten by ticks remain proactive about their health, and those in hot zones like the East End remain vigilant about their immune, digestive and liver health as a means of counteracting Lyme if it is contracted.

“The way to look at it is to keep yourself health internally, eat good clean food, take good, immune supporting supplements, support the detoxification pathways in the liver, do all the things preventatively to support your body so your body can handle it,” said Williams, adding a probiotic regimen is also recommended for intestinal health.

If you have been bitten by a blacklegged tick, Williams and the ILADS believe treatment is necessary – whether herbal or pharmaceutical in nature. Williams does not believe a dose to a months worth of the antibiotic doxycycline will take care of the disease in the case of CLD – where someone has had the disease for over a year – but that long-term antibiotic care or integrated care with nutritional or herbal supplements is necessary to truly fight the disease.

The debate over CLD has heated up in recent years, as awareness has led those who believe they have CLD or their family members have CLD to come out of the shadows and demand not only recognition, but care.

Treatment is “hugely expensive,” noted Williams, who hopes to open her center with the hope of being able to provide care to those who may not be able to afford it.

But hiding behind the belief that Lyme and its co-infections fall into one treatment category is not a reality Williams sees in practice. It was evidenced by the numbers that flocked to her lectures in Sag Harbor last weekend, desperate for answers.

“Every body is unique, and bodies respond differently to infections and to treatment,” said Williams. “We have to take a more comprehensive approach, looking at all the factors including potential co-infections, when providing treatment. We have to let that guide what we do first in terms of treatment.”

 

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