About 40 years after Lyme disease first appeared on national shores – specifically in Lyme, Connecticut, it is still a complicated, controversial conundrum for long-term sufferers and doctors. Despite the complexity and debates, some baby steps in research, treatment, and state and national legislation reveal the nation as a whole is beginning to take the tick-borne disease more seriously.

“It’s definitely a crisis. There is no doubt in my mind,” says Pat Smith, president of the nonprofit Lyme Disease Association (LymeDiseaseAssociation.org). “I’ve been involved with this for 32 years. I’ve seen nothing but numbers going up. And, unfortunately, remedies to combat it have not kept up.”

In 2013, the latest final numbers available from the Centers for Disease Control and Prevention (CDC) show that 36,307 people reported Lyme disease nationwide. And 2,925 of them, or 8 percent, were in Connecticut. Connecticut ranks fifth in the number of cases, behind Pennsylvania, Massachusetts, New York and New Jersey, Smith says. As far as the rates of incidents per 100,000 people, Connecticut had the fourth highest incidence rate with nearly 59 people per 100,000 people infected in 2013.

However, those numbers are misleading when it comes to this infection. Smith notes the reported numbers are only a fraction at 10 percent of the true cases of Lyme disease; cases have to meet a narrow CDC definition meant for surveillance, not for diagnosis. Fairfield County alone had 434 new cases in 2014, according to the Connecticut Department of Public Health, compared to 335 reported cases in 2010.

And added to the latest worries of tick-borne illnesses is the Powassan virus. Professor Durland Fish of the Yale School of Public Health – who has studied Lyme and other tick- and mosquito-borne diseases – said in an April interview that the virus had previously been rare in humans. However, recent ecological changes have caused the pathogen to spread to the deer tick, which is also responsible for Lyme. Powassan differs from Lyme in that it can be transmitted from ticks to humans much more quickly and is more likely to be fatal, according to the Yale website.

Legislative Progress

When patients have first tested positive for Lyme disease, they are likely put on an antibiotic regimen for up to a few weeks or a month. That can help rid the body of the disease if it’s caught quickly. But the Infectious Diseases Society of America (IDSA) does not believe in long-term treatment of Lyme. “Most cases of Lyme disease are successfully treated with a few weeks of antibiotics. Using antibiotics for a very long time – months or years – does not offer superior results and, in fact, can be dangerous because it can cause potentially fatal complications,” is one of the Lyme points explained on the IDSA website (IDSociety.org).

Most medical doctors adhere to these guidelines and “that is the heart of the problem,” Smith says, because long-term antibiotics have been known to help some chronic Lyme sufferers.

There is progress. As of mid-June, the Connecticut state legislature is considering a bill that would put $100,000 into education and prevention. BLAST – which stands for Bath after outdoor activity, Look for ticks and rashes, Apply repellants, Spray your yard, and Treat your pets – is a prevention program created by the leaders of Lyme Connection (LymeConnection.org), formerly known as the Ridgefield Lyme Task Force. The bill was awaiting the governor’s final approval in mid-June.

Nationally, U.S. Rep. Chris Smith of New Jersey, co-chairman of the congressional Lyme disease caucus, proposed a bill in June in the House appropriations committee that would help fund Lyme research. A total of $5 million has been included in the Department of Defense spending bill. The funding would help military personnel who have contracted Lyme find better treatments.

And in May, the energy and commerce committee passed the 21st Century Cures Act, which is designed to revolutionize biomedical innovation, including key provisions to boost research into Lyme and other tick-borne diseases.

More than 120 locations worldwide have confirmed cases of Lyme disease in the military services, Rep. Smith said in a statement. “The advances in research and treatments made on behalf of our men and women in uniform have substantive and beneficial applications for patients in the greater population.”

Research

Answers are coming, albeit more slowly than anyone would like. Dr. Brian Fallon, director of the Lyme and Tick-borne Diseases Research Center (Columbia-Lyme.org) at Columbia University Medical Center, has been conducting research since the early 1990s. Experts know early antibiotic treatment is essential and those with neurological problems often benefit from IV antibiotic therapy, Fallon says.

A new brain imaging and treatment study will start soon at the medical center – funded in part by the Global Lyme Alliance – for patients suffering from persistent pain and/or sensory hyperarousal after well-documented Lyme disease. The study will look at pain pathways and circuits, and treat them with agents that adjust neurotransmitters that specifically correlate with pain. “Then we’ll evaluate if they are better after treatment,” Fallon says. “The goal is to see if we can demonstrate the effectiveness of a new non-antibiotic treatment for patients with post-antibiotic Lyme pain – one that modulates the neurotransmitters that mediate pain transmission,” he says.

The medical center is also set to conduct a study with Dr. Charles Alexander, a Southport-based psychiatrist who has expertise in Kundalini yoga. It’s available free of charge to people with well-documented prior Lyme who have chronic fatigue or pain. It incorporates Kundalini breathing, guided meditation and light stretching every day for 20 minutes, for eight weeks, with evaluations at different intervals (for more details, call 646-774-8100).

Another hopeful sign is a new vaccine for those living in Lyme endemic regions, developed by scientists in Virginia. It is about to be approved for dogs, and could likely lead to a vaccine for humans in coming years, Fallon says.

Gary Gruber, a naturopathic physician with offices in New Canaan and Stamford, has been treating people with Lyme for ten years. “The most important thing about treatment is personalization. You cannot just give someone a standard off-the-shelf protocol because that’s what you heard could treat Lyme disease,” he says. He looks at how each person’s body regulates itself via the immune (including the digestive system), nervous and hormonal systems. One test he conducts is CRT, or computerized regulation thermography. CRT is an FDA-approved non-invasive method of evaluating a body’s organs. Testing is done by measuring body temperature at different points on the skin, which correspond to specific organs and tissues.

Gruber also tests for food allergies, yeast infections, viral infections and heavy metals, which can downgrade the immune system. And he has patients learn how to manage their potentially negative or critical emotions. “I can’t stress it enough,” he says. “Your immune system is tied into your emotions.”

And it’s all tied to Lyme in that “dis-ease” means the body is out of balance. He suggests proper diets, including low protein and alkaline foods, and avoiding dairy and meats – which create acidic environments in which bacteria and fungus like to thrive and become virulent.

Chronic Sufferers

Some people with chronic Lyme disease tell similar stories of missed diagnoses and frustration while seeking relief. Deni Weber, 64 of Georgetown, is a licensed professional counselor and certified as a diplomat of comprehensive energy psychology. She runs a support group for Lyme sufferers. She was diagnosed 15 years ago, but likely had been bit years before.

Weber first went to a naturopath who told her she was going through perimenopause or menopause. Then she felt flu-like, and her primary care physician told her to get a blood test. “I was one of the lucky ones. I tested positive,” she recalls. Half the time typical blood tests do not test accurately. She took antibiotics for 28 days, which is typical. The fatigue stayed and she just wanted to stay on the sofa and watch television all day. “I don’t watch TV,” she explains.

Weber eventually saw a naturopathic doctor and was treated with homeopathic pills, and later oxygen therapy via a mask. She was also treated with Ondamed, which is an FDA-approved biofeedback device for muscle relaxation.

It helped her, but she still combats balance issues, pain in her neck, cognitive impairment, hearing loss and poor memory. “Sometimes when I know what I want to say I feel like I’m in a big cloud and I cannot get the words out,” Weber says. “Memories are very important things in my life.” She was shocked, disheartened and sad to realize she couldn’t remember parts of her son’s birth 28 years ago.

Karen Gaudian, co-founder of the Lyme Connection, also treated her Lyme disease – complete with neck stiffness, muscle spasms and debilitating headaches – with bouts of antibiotic treatments interspersed with natural remedies over about five years. “I saw numerous physicians and took a lot of different antibiotics and herbal treatments,” she recalls. “I think I’m recovered. I can say my name and dial a phone.”

All four members of her family also had Lyme. “I never found a tick on my kids,” she recalls. For one daughter, it took 12 years for her to fully recover after diagnosis. Her husband still battles symptoms and doesn’t work.

“It’s a very complex organism, and it’s a sister of syphilis,” Gaudian says. “Some patients are really traumatized from their doctors who might dismiss them, or they send you to psychologists, and insurance won’t pay for it,” she says. “Your spouse might get mad because you’re not functioning, and you might hurt friends because you are cancelling on events. You might make mistakes at work. It’s a whirlwind. And when you come to a support group, there is help and you are not alone and you can get through it.”

The group also pushes for legislation and policy changes. Physicians who treat Lyme for longer than 30 days risk being brought up against their medical examining boards in their states as this is outside the recommendations of the IDSA. “This has been a problem specifically with Lyme disease, but is becoming more common with other illnesses as well,” Gaudian says.

Leslie Beech of Stamford spent $25,000 on treatments for her Lyme disease. It started in 2005, when she was 35 and had insomnia. It was followed by headaches, shaking and crying fits, mood swings and digestive problems. She couldn’t straighten her leg at one point, and her anxiety grew. She then felt vertigo and had an MRI done. Nothing was found, so she was prescribed medication for migraine headaches. She saw three ear, nose and throat doctors who found nothing wrong. At one point she felt as if bugs were inside her skin.

Doctors eventually prescribed Seroquel for sleeping and Lamictal for anxiety and mood swings. In 2008, she sought Chinese medicine and therapeutic massage treatment at Arogya Holistic Healing Center in Westport. It wasn’t until 2012 when Dr. Monique Class of Stamford diagnosed her with Lyme and ordered the Western blot test. She referred Beech to receive vibrational medicine, which included 126 days of herbal remedies and some supplements. She never took antibiotics for Lyme.

Beech, who stays away from wheat, sugar and processed foods, lives now with only a few mild symptoms and manages them through diet and stress management. She uses essential oils to help her sleep, relax, elevate her mood, combat headaches and aid with back or adrenal pain.

Testing

Many Lyme sufferers have suspected Lyme in the past, but simple blood tests show they test negative for the disease. Robert Favicchia, a self-employed horse farrier in Danbury, had blood tests that came back negative. But Favicchia was suffering from intermittent stabbing pains in his arms, memory loss and brain fog; he was convinced he had been bit by an infected tick years prior. Finally, his doctor had a specialty lab called IGenX test 15 vials of his blood, which found he did test positive for Lyme. Favicchia had been likely living with untreated Lyme disease for nearly a decade.

Hope

Smith of the Lyme Disease Association says her youngest daughter suffered from Lyme symptoms for 27 years, including seizures. Her daughter now lives and works in New York City. “She still has problems, but she’s able to function,” Smith says. “You do need to be patient and realize that oftentimes it is a long road. But stick with it and find a physician who is knowledgeable. Many times people can return to a somewhat normal life where they are able to function in society.”

Fallon even believes that in another three to four years new diagnostic tests will be available. “There is so much exciting work going on because of the advances in biotechnology,” Fallon says, including speed and accuracy of newer approaches to molecular genetics, metabolomics and immunology. “The future [regarding Lyme] for people in Fairfield County is going to be excellent in another 10 years. The technology is enabling vast strides both in diagnostics, the identification of promising new treatment approaches, and potentially, in the not-too-distant future, a different and better vaccine.”

Angela Pascopella is a 25-year journalist, who also works full-time as managing editor for a national business trade publication. She lives with her husband, Robert Favicchia, in Danbury.

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Local Resources

• Other resources for information include Tick-borne Disease Alliance (TbDAlliance.org) and the Under Our Skin documentary (UnderOurSkin.com/#Home-Emergence).

• Lyme Disease Association - Eastern Connecticut Chapter - [email protected]

• Lyme Connection - Town Hall Annex, 66 Prospect St, Ridgefield - 203-431-2745 - LymeConnection.org

• Gary Gruber, ND - Family and Environmental Medicine - 68 Old Stamford Rd, New Canaan 203-966-6360 or 111 High Ridge Rd, Stamford - 203-539-1149 -
ScienceMeetsNature.org

• Deni Weber - Inner Change Counseling - Center for Holistic Health - DeniWeber.com