What we don't know about Lyme disease can hurt us. In fact, what we don't know can lead to disaster.
Lyme, often called "The Great Imitator", flaunts itself in a myriad of different guises, masquerading as other illnesses. Lyme disease has been misdiagnosed as autism, amyotrophic lateral sclerosis, bipolar disorder, Chronic Fatigue Syndrome and depression.
It's passed itself off as dementia, fibromyalgia, Gulf War syndrome, lupus and multiple sclerosis. It's been mistaken for obsessive compulsive disorder, Parkinsons' disease, rheumatoid arthritis and schizophrenia.
In actuality it's an infection transmitted by ticks carrying the bacterium Borrelia burgdorferi, the corkscrew-shaped spirochete that causes Lyme disease.
The classic Lyme scenario is misleading. Infection isn't always a result of walking in the woods. Sufferers aren't always aware of a tick bite and, when they are, the bite doesn't always leave a bull's eye rash.
Monday (who asked that her last name not be used) is a Lyme sufferer in California, where people aren't "supposed" to get Lyme. Monday says she and her siblings were born with it, infected pre-birth by their mother who later died of undiagnosed chronic Lyme. She says she then passed it on to her own daughter in the womb.
It's been believed that deer ticks carrying Borrelia burgdorferi were restricted to the Minnesota woods or the east coast. But the ticks' stomping grounds extend much farther. In the past decade, Lyme-laden ticks have appeared in every state and around the world.
There are five subspecies of Borrelia burgdorferi with over 100 strains in the U.S. and 300 strains globally.
Populated areas are not exempt. And deer are not the only accomplices. According to research from the School of Public Health, 71 species of birds carrying black-legged ticks spread Lyme. The journal Frontiers in Ecology and the Environment says almost 60 percent of bird species infect ticks. So do chipmunks, mice and shrews.
Lonestar ticks of the Pacific coast also carry Borrelia burgdorferi.
And Borrelia burgdorferi isn't the only infectious agent these ticks carry. Anapamosis, babesia, bartonella and ehrlichia are co-infections which need simultaneous treatment for a chance at full recovery.
Less than half of all Lyme patients remember a tick bite, or display a single erythema migrans (EM or "bull's eye") rash. In fact, a wide range of rashes can appear, from multiple, to flat, to raised, to blistering. A rash can look like a spider bite, cellulitis or ringworm. Some people have no rash at all.
Sue Jackson of Wilmington, Delaware, figures she caught Lyme the old-fashioned way, camping. But she never saw a tick. Nor did she see one when her son Jamie previously contracted Lyme.
Sue has battled Chronic Fatigue Syndrome since 2002. But in 2008 after a family camping trip, her CFS symptoms worsened, and she experienced new symptoms. Pain in her knees made her think of Lyme disease, because her 16-year-old son Jamie had severe knee pain during two bouts of Lyme.
Jamie tested positive for Lyme in 2003, after flu symptoms and knee pain, and went on amoxicillin. Within months he was symptom-free. In 2004, Jamie contracted Chronic Fatigue Syndrome but had no sign of Lyme. CFS treatments helped. But in 2007 Jamie again tested positive for Lyme, improving somewhat on doxycycline.
In 2009, Jamie had lines like stretch marks appear on his back and pain in the soles of his feet. Bartonella, a co-infection, can cause these types of marks, foot pain, headaches and light sensitivity. Jamie tested positive for Lyme and babesiosis, another co-infection, giving him a diagnosis of three tick-borne infections.
Sue said, "Pay attention to your own instincts. If you feel something is wrong or different and your doctor says it’s nothing, go see another doctor. In Jamie’s case, we knew his symptoms perfectly matched those of bartonella, based on our internet research. The doctor’s explanation of stretch marks from growth just didn’t make sense – Jamie has never been overweight and grew at a fairly normal rate. Plus they exactly matched the photos we found online of bart rashes. You have to be your own (or your child’s) advocate."
Don't focus solely on the bull's eye. Watch for symptoms like headaches, stiff neck, sleep disturbance and cognitive problems. Other symptoms are hyperacusis (severe hypersensitivity to sounds), lightheadedness, numbness and tingling, photosensitivity (hypersensitivity to light), tinnitis ("ringing in the ears") and twitching muscles. Effects on the nervous system can cause anxiety, depression, mood swings and panic attacks.
There are two approaches to treatment. Antibiotic and natural protocols differ widely, but patients improve on them both.
The International Lyme and Associated Diseases Society (ILADS) advocates using antibiotics. ILADS cautions that short courses won't eradicate Borrelia burgdorferi. ILADS recommends prolonged treatment because consequences of unresolved Lyme are more devastating than the consequences of long-term antibiotic treatment.
According to ILADS about 25 percent of those with acute culture-proven Lyme disease remain seronegative (showing a false negative) on serial Western blot sampling. The Western blot identifies Lyme antibodies, and detects chronic Lyme infection.
Diagnosis of the Western blot should be performed by a laboratory like Igenex that specializes in Lyme, and that reads and reports all bands related to Borrelia burgdorferi.
The Centers for Disease Control and Prevention (CDC) eliminated the reading of Bands 31 and 34. However these bands are essential to identify Borrelia burgdorferi infection.
The CDC surveillance criteria for Lyme were created to study factors affecting the health of different populations. The CDC website says these were never intended as diagnostic criteria. They were never meant to fully define Lyme.
Sue's Western blot test had come back negative. She took the antibiotic doxycycline to determine if she had Lyme. Her symptoms improved, then worsened, which is a herx reaction that occurs when toxins are released in the healing process.
Sue knew she needed a Lyme specialist and contacted Sue Driver, founder and leader of Delaware's Lyme Support Network, and a Lyme sufferer herself. With Driver's help she found Dr. Steven Streit in New Jersey.
Streit ran tests for Lyme and co-infections through Igenex. Sue tested negative except for one positive band for Lyme. But Streit took her symptoms and her response to doxycycline as a Lyme diagnosis.
Sue is on her fourth round of doxycycline. "My Lyme doctor still feels optimistic that I will eventually get rid of Lyme completely," she said.
"At my last visit, he said it seems I’m at a plateau in my treatment, so he recommended another supplement (a homeopathic remedy) that he thinks will help to draw the Lyme out into my bloodstream so the doxy can get to it better."
Sue urges anyone who may have Lyme to seek referrals to Lyme specialists immediately. "Get tested through Igenex – make sure that all co-infections are included. Educate yourself; read the diagnosis and treatment guidelines at ILADS."
Monday always knew something was wrong. But it was years before she knew what it was. She eventually found a doctor who said, "It sounds like you have Lyme."
As Monday learned about Lyme, "everything finally made sense". She was diagnosed in January 2009 at the age of 59, after being sick and seeing doctors without success most of her life.
She said, "Even the most loving, caring doctor is unaware. If they don't see a bulls-eye rash they say it can't be Lyme."
Monday takes the natural approach. She's seeing a naturopath and a family physician who is board-certified by the American Board of Holistic Medicine. She said they saved her life through a combination of homeopathic, naturopathic and western treatments.
She uses herbs, tinctures and other naturopathic remedies. She takes vitamins, minerals, probiotics and hormones. She's utilized plant stem cell therapy and homeopathic remedies. Monday's natural protocol focuses on building up the terrain of her immune system and eliminating toxins. Her body's defenses are strengthened so they can take on Lyme and co-infections, and win.
She said, "There is hope. You get diagnosed. It's a very slow process and you have to be patient, but you have to hope."
Monday rarely leaves the house. She's still partially bedridden, and still occasionally needs oxygen.
Monday said, "You have to change the way you think about living. If you're not doing something you're worthless. That's what I used to think. I went into deep depression. I had to change the way I thought . Be thankful for what you can do. It's a radical change."
She can't walk around the block yet, but she can go part way. This is enormous improvement, since a year or so ago she couldn't get out of bed.
"The loss has been unbelievable. I made a six figure income, and went down to zero. I couldn't get out of bed to go to the bathroom."
Monday's first husband left her and their daughter. "I had no idea how I was going to feed her."
She has remarried, to a supportive and nurturing man named Walt. "Without my husband, I don't know if I would have survived."
Walt encourages all those suffering with Lyme, "Be open to alternative ideas and alternative treatments. Other civilizations have existed far longer than we've had modern medicine."
Basic Information about Lyme Disease
Looking at Lyme Disease