Lyme Disease & Chronic Pain

09/04/2011 08:32

Lyme disease is the fastest growing infectious disease in the United States, with an estimated 225,000+ new cases each year, according to the national Lyme Disease Association (LDA). Named after Lyme, Conn., where it was first found, Lyme disease is transmitted by the bite of an infected deer tick.

Often, people are unaware they have contracted Lyme disease, since ticks carrying the Lyme-causing bacteria are small—often the size of a poppy seed—so many people don't even notice or remember being bitten. And, contrary to popular opinion, less than 60% of those infected develop the hallmark circular "bull's eye" rash—some may have another type of rash or no rash at all.

Another challenge is the lack of "Lyme literate" providers, according to Pat Smith, president of LDA. "Lyme disease often goes undiagnosed for long periods of time, and sometimes it is not adequately treated, so patients may go on to develop persisting symptoms," she said.

While most people have a complete resolution of symptoms after standard treatment of early Lyme disease with a 3-week course of antibiotics, some are left with ongoing, potentially debilitating health problems, including arthritis and serious neurological issues.

 

 Is it Lyme?

Although most tick bites don't result in Lyme disease, it's helpful to know what to look for. Common symptoms, many of which mimic the flu and other diseases, may include:

    • A skin rash, often resembling a bulls-eye
    • Fever
    • Headache
    • Muscle pain
    • Stiff neck
    • Swelling of knees and other large joints

So, how do you get Lyme disease?

When an infected tick bites you, bacteria known as Borrelia burgdorferi can be transmitted into the skin, rapidly flooding the bloodstream. From there, the bacteria can lodge themselves in different parts of the body—from the joints and connective tissue to the heart, spine, brain and other areas.

Here, they may reside quietly, not causing any major problems, or they could trigger a strong proinflammatory immune response that may lead to swelling and/or pain in the joints, an irregular heart rhythm and/or meningismus. Meningismus is the irritation of the membranes surrounding the central nervous system that can lead to stiff neck, severe headache, paralysis of the face muscles (Bell's palsy), nausea and numbness, pain or weakness of the limbs. If the bacteria manage to creep into the central nervous system, patients may also experience confusion, memory lapses, poor coordination, mood swings and other cognitive issues.

Lyme-related Pain

A study in the December 2008 issue of the Journal of Arthritis and Rheumatism found that most patients with chronic Lyme disease report associated pain. They are also likely to experience fatigue, difficulty concentrating and sleep disturbance—all vicious parts of the pain cycle.

"I've had patients describe it as a deep boring pain almost as if it's in their bones," said Brian Fallon, MD, director of the Columbia Lyme & Tick-Borne Diseases Research Center at Columbia University, which opened in April 2007 to better understand the occurrence and treatment of chronic persistent symptoms. "Patients can also get odd sensations. One woman described what felt like a wooly caterpillar on fire under her skin."

Experts say it's reasonable to believe that some patients with chronic pain syndromes associated with Lyme disease may develop a heightened activation of the pain pathways, sensitizing them not just to one type of pain, but multiple types of pain. This means that otherwise mild symptoms might be perceived as abnormally intense, problematic or distressing for a patient with a history of Lyme disease, or for those with other pre-existing pain conditions like fibromyalgia.

 

 Preventing Lyme from the Start

If you and your loved ones enjoy spending time outside, the LDA recommends that you get tick smart.

  • Check yourself for ticks, and don't forget your pets too. If you find a tick, it's important to remove it properly to avoid increasing the risk of infection. Use pointed tweezers as close to the skin as possible and pull the tick straight out. Never squeeze the tick's body because you can accidently inject harmful organisms into your body. And never put any substance on the tick to try to get it to back out.
  • Choose light-colored clothing to help you see ticks more easily. Put clothes in the dryer for 35 minutes to kill any ticks on them upon return from the outdoors.
  • Wear long-sleeved shirts and long pants that can be tucked into your socks so ticks can't crawl up your legs.
  • Try to walk in the center of trails to avoid overgrown grass or brush.
  • Become an informed consumer. Learn about products, including insect repellents containing 10% to 30% DEET (N,N-diethyl-meta-toluamide) or Permethrin-based products that can be used on clothing before wearing them. Always follow cautions and directions on the product label and when using repellents be careful not to apply too much.

 

 

 

"There are a fair number of patients who do develop what I call sensory hyper-arousal," said Dr. Fallon. "For example, they may have trouble going outside in normal daylight without closing their eyes or wearing multiple layers of sunglasses, or they may have a heightened sense of hearing so that normal sounds are much more irritating or confusing, or be more sensitive to touch so that skin sensations, let's say clothes on your body, might become very uncomfortable."

 

LYME TRUTHS

  • Lyme disease can affect the skin, joints, nervous system and other organ systems. About 10-20% of untreated patients will develop chronic arthritis that lasts a lifetime.
  • Not all deer ticks are infected with the bacteria that cause the disease. They are called deer ticks because they usually feed and mate on deer.
  • Lyme disease is most common among people who live in Northeastern, Pacific Northwest and Northern Midwestern states.
  • Ticks are generally found in areas where there is leafy material or other ground cover; lawns that border woods or fields, typically along pathways waiting for low lying vegetation.
  • If you don't notice the "hallmark" bull's eye rash, you could still be infected; less than half have of people infected actually have it.
  • Ticks can be the size of a poppy seed—so most people don't notice or remember getting bitten.
  • More likely to get bitten April through November, although with climate changes the tick population appears to be changing, so this may be becoming a year-round health threat.

 

Challenges to Adequate Treatment

The standard treatment for Lyme disease based on one set of professional guidelines from the Infectious Disease Society of America is generally 3 to 4 weeks of antibiotics. A second course may be recommended if the patient relapses or symptoms persist. The problem with this approach, according to Dr. Fallon and Smith, is that a short course of antibiotics alone will not help the minority of patients who suffer significant, persistent health problems related to this infection.

"Most people now acknowledge that Lyme disease can cause severe neurological problems and pain if untreated," said Smith. "Many treating physicians and patients feel that small amounts of the organism may be left, causing the ongoing symptoms, perhaps by triggering an immune cascade."

The immune system, in producing inflammatory markers, can contribute to painful symptoms. For example, there have been a number of studies of Lyme arthritis, which can be profoundly painful and debilitating, yet it's been very hard to document evidence of remaining infection in the joints in these patients, which has been problematic, explains Dr. Fallon.

"There remains a misconception among some health professionals that Lyme disease is easily cured and that anyone who has persistent symptoms has some other problem unrelated to the Lyme disease," said Dr. Fallon. "And when you have someone who was perfectly healthy until age 35 and all of a sudden they get a well documented case of Lyme disease and for the next 10 years they're struggling with pain, fatigue, parathesias, maybe some cognitive problems…to say that's a different illness just doesn't make logical sense. Ongoing symptoms may no longer be due to persistent infection, but to say it's no longer related to the initial Lyme infection seems odd."

The Search for Answers

Research is underway to find strategies to treat persistent symptoms other than prescribing more antibiotics.

"We need a much more comprehensive approach to helping people with chronic persistent symptoms, including pain," Dr. Fallon said. "These might include anti-depressants, hypnotherapy, biofeedback and more formal evaluation of other problems that may have developed."

In Sweden, researchers are studying why some patients develop chronic persistent symptoms, while others clear the infection very quickly. This promising area of research is looking at genetic variables in patients' initial immune response against the Lymeinducing bacteria that may help predict who is going to develop chronic symptoms and who will not. For example, some patients have a strong proinflammatory response and are able to fight off and kill the bacteria. Others might have a strong proinflammatory response that never stops and, therefore, causes ongoing symptoms even after bacteria has been cleared. Still others might not have a strong enough response and may not be able to eliminate organism before it gets lodged deep in tissue.

"This work is very promising and addresses the logical assumption that as human beings our genetic variability plays a role in our immune responses," says Dr. Fallon. "Most patients do well in clearing the infection. But, even if 10% go onto develop problems that can last for several years, that's a large number of people and lots of disability given the high prevalence of Lyme disease in the community."

 

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