InFocus Magazine

One afternoon back in 2011, Amber Robinson noticed something strange about her left hand.

“It felt weird all of a sudden,” says the 44-year-old Courtenay woman. “The padded area on my palm, just underneath my thumb, started to spasm. It was sort of like an internal tremor or like aliens were inside my hand.”

Since that day, Robinson’s hand symptoms have persisted and worsened. “Not long after, I started to lose my grip. I’ve also experienced nerve pain, and my hand will occasionally go into a claw—it will spasm really strongly and my entire hand will clench. When that happens, I have to use my right hand to pry my left hand open.”

What Robinson didn’t know at the time was that her bizarre hand symptoms were just the beginning—the beginning of her journey into the terrifying and lonely world of Lyme disease.

Lyme disease, named after the town in Connecticut where it was initially described, is caused by Borrelia burgdorferi, a spirochete or corkscrew-shaped bacteria that commonly infects woodland animals such as rabbits, deer mice, songbirds, and most commonly, the white-tailed deer. Lyme’s main vector—an insect that is a carrier of a disease-producing organism—is the black-legged tick, an insect that’s barely the size of the period at the end of this sentence. The tick feeds on these infected animals, and if the infected tick eventually lands on and bites a person, it can spread the bacteria to its new host.

Once the Lyme-causing bacteria is inside of a person, the spirochete can drill through tissue and can embed itself in the central nervous system, heart, brain, liver, spleen and joints. These highly evolved microbes cause a host of symptoms ranging from dizziness to paralysis. Some infected individuals report flu-like symptoms, fatigue, neck stiffness, jaw discomfort and swollen glands. Nervous system abnormalities include memory loss and partial facial paralysis (Bell’s palsy). Peripheral neuropathy, migratory joint pains and pains in the tendons, muscles and bones may occur later in the disease. More subtle changes such as memory loss, difficulty with concentration, and a change in mood or sleeping habits have also been associated with Lyme disease. The sheer range of symptoms of Lyme disease—there are more than 100—have caused this shape-shifting disease to be dubbed ‘The Great Impostor.’

Lyme could also be called ‘The Great Traveler’, since it is found on every continent except for the Antarctic. In fact, though already impressive, the habitat range of ticks is increasing every year as climate change warms the earth, thereby increasing the areas where ticks can survive.

As one would suspect, the increasing range of ticks means it is becoming easier for one to be bitten by a tick.  In fact, here in British Columbia, Western black-legged ticks are active for every season, posing a year-round risk.  British Columbia represents the latest province where Lyme disease is endemic or well-established, with the heaviest concentration of ticks found in the Lower Mainland and Vancouver Island.

Though tick bites are the most common way a person can become infected with Lyme disease, it is proven that pregnant women can pass it on to their unborn children. In addition, a prenatal infection of Lyme disease can make the mother more likely to miscarry. Not yet proven is the question of whether or not Lyme disease can be contracted sexually or through blood transfusion.

Even though Lyme disease is considered the most pervasive vector-borne illness in North America, it has, for the most part, flown under the radar of most public officials and medical professionals. In fact, Canada’s Public Health Agency only started tracking the disease in 2009. Even so, some consider Lyme disease to be one of the most under-diagnosed diseases in Canada. In North America, more people contract Lyme than they do AIDS, West Nile and Avian Flu combined.

Lyme disease certainly wasn’t on Robinson’s radar. “I don’t remember ever being bitten by a tick,” recalls Robinson. “But I did love to camp with my daughter over the years—we spent a lot of time outside.” In fact, spending time in wooded or grassy areas is considered the number one risk factor in contracting Lyme disease. Generally, ticks prefer humid environments such as forests, leaf mold, and on lawns and back yards where ticks climb up grasses and bushes on the edges of trails to wait for a new host to pass by.

Because a tick bite is painless, many people, like Robinson, do not realize they have been bitten. To make matters worse, though some Lyme victims experience immediate symptoms after infection, others may be asymptomatic for months or even years. Symptoms, when they do appear, will sometimes disappear and then reappear at various times. Lyme can even go into a dormant stage in the form of cysts, sitting quiet in our system for years, even decades, until the right combination of stresses tip the scale.

Robinson believes this is what happened to her. “I think I lived for years with the bacteria in my body, and for the most part I don’t remember having symptoms during that time. But a couple years ago I traveled to Mexico and came back quite ill. I think that infection triggered the Lyme bacteria to come out of hiding.”

Soon after Robinson’s return from Mexico her symptoms began, starting with her hand and quickly growing into a long list of ailments such as joint pain, dizziness, debilitating fatigue, tinnitus, brain fog and carpal tunnel. The fact that Robinson lived for years not knowing she had Lyme disease has made her recovery especially elusive, since early treatment of Lyme disease is critical.

When identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease. However, if left untreated, Lyme disease can cause permanent damage to the heart, nervous system and joints. Unfortunately, Lyme is very difficult to diagnose because symptoms vary from person to person. As a result, many Lyme disease sufferers are initially misdiagnosed with other diseases that have similar symptoms to Lyme, such as multiple sclerosis, lupus, Parkinson’s, early-onset Alzheimer’s, autism spectrum disorder and ALS. In fact, many patients with fibromyalgia, chronic fatigue syndrome and autoimmune diseases often have untreated Lyme disease. When patients who in fact have Lyme disease are not diagnosed or are misdiagnosed they do not receive the appropriate treatment, thereby exacerbating the symptoms.

Like many with Lyme disease, Robinson was initially diagnosed with ALS. On her quest to find what was wrong with her, Robinson consulted with two neurosurgeons—the first who decided that Robinson was suffering from ALS.

“After he told me that I had ALS, I spent the next couple of weeks preparing to die,” recalls Robinson. She even measured her living room to make sure that a hospital bed would fit and she ensured that her mother would be able to care for her. Even so, there was a small part of Robinson that refused to believe that ALS was the reason for her symptoms, so she asked for a second opinion.

“I asked to see the other neurologist for a lumbar puncture and for some more nerve conductive tests,” Robinson says. After enduring more tests, the second neurologist informed Robinson that she was missing a critical component to ALS—conductive blocks—and therefore determined that ALS was not what was causing Robinson’s hand symptoms.

“In my heart of hearts I knew that I did not have ALS,” says Robinson. “Though the tests were incredibly painful, that was a very happy doctor’s appointment.”

The next day was a happy day too—and that’s also when Robinson started to suspect the real reason for her illness. “I remember that a ferry passenger commented that my smile was the biggest he’d seen in a long time,” recalls Robinson, who has worked for BC Ferries for the last 15 years. “I told him that I was smiling because I didn’t have ALS. I was surprised when he told me that he’d also been diagnosed with ALS, but it turned out to be Lyme disease.” That got Robinson wondering—could it be Lyme disease that was making her so sick?

Lyme disease was now on Robinson’s radar, but she needed a definitive diagnosis, and unfortunately, that can be difficult to achieve. In order to be diagnosed, patients are told to look for a bull’s-eye rash known as Erythema migrans. The problem is that many Lyme sufferers—at least 50 per cent of Lyme cases—don’t present with the bull’s-eye rash. “I don’t remember ever having had the bull’s-eye rash,” Robinson says.  Surprisingly, most physicians still use the bull’s-eye rash as a first indicator of Lyme disease.

According to the Centre for Disease Control, Lyme disease should be determined using a clinical diagnosis, meaning that the physician makes the diagnosis using your clinical history and symptoms. Lab tests should only be used to confirm a clinical diagnosis. However, many physicians in Canada still depend on a test-derived diagnosis before treatment will be given.  The problem is that the two-tiered testing protocol used in Canada and the US is riddled with false negatives and is unable to detect all bacterial strains and co-infections.  As well, the first test—the ELISA—is ineffective in detecting the infection in its early stages. A negative test means the second phase—the Western Blot—isn’t applied, and closes the door on further testing and treatment.

Through shear perseverance, Robinson finally received a diagnosis for Lyme disease. But the diagnosis was just the beginning of her battle.  For most people diagnosed with Lyme disease, a large part of the battle is the cost of treatment. According to numbers provided by the American Centre for Disease Control, the cost of the disease in the United States is more than $3 billion annually—a financial impact borne largely by patients and their families.

Here in Canada, the situation is no different. In fact, for most Canadians with Lyme disease, the cost of late-stage Lyme treatment is devastating. Most have to pay for their treatment out of pocket as long term treatment for Lyme is not covered under the Medical Services Plan. Paradoxically, many Lyme disease sufferers lose their income when they need it most, as they can no longer fulfill their job requirements.

“You have to go underground to get treatment to fight Lyme,” Robinson says. “Every day I worry about my livelihood and my finances. Treatment such as antibiotics and IV injections are all coming out of my pocket. I spend over $900 each week for my treatment, and that doesn’t include my supplements or my antibiotics.”

Since first being discovered in 1977, few if any diseases have held as much controversy as Lyme disease, especially chronic Lyme disease. In North America, the guidelines of the Infectious Diseases Society (IDSA) heavily influence most physicians. In fact, most physicians within the mainstream medical community are quite skeptical about the existence of chronic Lyme disease. IDSA guidelines state that there is no convincing biologic evidence for chronic Lyme infection and recommend only the short term treatment. IDSA guidelines advise that Lyme can be effectively treated with no more than four weeks of antibiotics, and any symptoms that persist after treatment are attributed to temporary residual effects of the Lyme bacteria, or even as psychosomatic.

Lyme advocacy groups and ‘Lyme-literate’ doctors disagree with the IDSA guidelines. They believe long-term antibiotics are required to completely vanquish the infection. Long-term antibiotics are considered necessary because of the long division time of Borrelia burgdorferi. Most other pathogens, such as Streptococcus or Staphylococcus, only take 20 minutes to double, but the doubling time of Borrelia burgdorferi is estimated to be 12 to 24 hours. Most antibiotics are cell wall agent inhibitors, meaning they can only kill bacteria when the bacteria begins to divide and form new cell walls. Therefore, a slow doubling time means less lethal exposure to antibiotics.

Most bacteria are killed in 10 to 14 days of antibiotic treatment. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present for much longer—some experts estimate that antibiotics need to be present 24 hours a day for 18 months to completely eradicate the Lyme bacteria.

The problem is that Canadian doctors who’ve treated “chronic Lyme” with long-term antibiotics have been disciplined and/or seen their medical licences revoked. The result has been a medical standoff—and an underground Lyme treatment network that sees Canadians travelling to the areas in the US called Lyme-leper colonies, and paying upward of $50,000 for treatment.

“It’s bad enough to have Lyme disease, but then to not get any support from my country’s medical system—it just adds insult to injury,” says Robinson. “The emotional pain is huge. You feel abandoned when you have Lyme disease. When you try to get medical care you just keep running up against brick walls. Here’s how I can best describe how I feel—I used to be very patriotic, but not anymore. My country has failed me.”

The treatment for Lyme might improve soon here in Canada, thanks to Elizabeth May, Green Party leader and the MLA for the Gulf Islands. In 2012, May decided to fight for Lyme disease sufferers when she put forth her private members bill C-442, titled the Federal Framework on Lyme Disease Act. C-442 calls for a coordinated strategy to track the incidence rates, create educational materials to raise awareness about Lyme disease, and establish testing and treatment guidelines. It also calls for research support and more reliable diagnostic testing, as well as increased education and awareness among physicians. Unlike most private members bills, C-442 passed unanimously at third reading by the Senate on December 12, 2014 and now awaits Royal Assent by the Governor General for it to become law.

Though the future of Lyme disease treatment may be changing for the better, at present those with Lyme disease have a hard battle to fight.

“Having Lyme disease… it’s a roller coaster,” says Robinson. “I take it day by day. Lyme just leaves nothing untouched—it’s taken over my life. And it’s pretty isolating too. You quickly figure out who your people are when you have Lyme disease. Some really rise to the occasion and some just want to pretend it’s not happening. It’s hard because Lyme disease doesn’t look like cancer does. Outwardly, I might look like I’m healthy, but inside I’m riddled with disease. And if someone else says, ‘Oh, but you look good!’ I think I’m going to freak out.”

Though life is a day-by-day operation for Robinson, she has found that she has a circle of supporters who she knows will stand by her. “Though shift work is hard and the exposure to the elements impedes my progress, I know that going to work is good for my mental health,” she says. “It’s a big extended family there [at BC Ferries]. My co-workers make me feel good and loved. They’re very supportive.”

Robinson also has her mother, Robin Dyck, to help her through this incredibly difficult time. “I’ve watched Amber suffer and many times I’ve wanted to trade places with her,” says Dyck. “But I’m so proud of her. Through it all she’s never taken the word ‘no’ as an answer and she’s researched Lyme disease daily since her diagnosis. If anyone can turn this around it will be Amber.”

And Robinson has every intention of turning things around, but she needs some help along the way. Robinson’s longtime friend, Paige Ennis, set up a fund raising page at YouCaring when she saw what her friend was going through.

“I admire Amber so much,” Ennis says. “She has no choice but to go to work every day because it’s tricky here in Canada when you have chronic Lyme disease. Amber wants to enjoy life to the fullest. To live and be free. But Lyme disease has really tied her down.

“The fundraising site…well, it’s had almost 400 shares, but only a handful of donations. I want people to know that any amount is appreciated—even $20 or $30 makes a huge difference,” adds Ennis, who is hopeful that those who read this article will go to the YouCaring page and help Robinson as she faces her battle with Lyme disease.

To help Robinson in her battle against Lyme go to: www.youcaring.com/medical-fundraiser/amber-robinson-no-time-for-lyme-/272792

 

Lyme Disease & Tick Protection

Western Black-legged Ticks:
The Western Black-legged tick is very common during the spring and early summer. It occurs on vegetation in warm, moist areas on Vancouver Island, the Gulf Islands, and along the mainland coast between the United States border and Powell River. Its eastward range extends along the Fraser River to Yale and north to Boston Bar. The red and black females and smaller black males attach to humans, deer, cats and dogs, becoming grey and bean-like in size as they feed.

• Color: Reddish/orange-brown with dark legs
• Shape: Flat, broad oval
• Size: 1/4 inch long

 

How can you protect yourself from Lyme disease?

• Wear long sleeve shirts and long pants when going into tick country.
• Light colors are best so ticks can be easily seen.
• Tuck pants into socks and spray clothes with a commercial insect repellent containing diethyl toluamide (DEET) to repel ticks.
• If possible, avoid game trails or old roads overgrown or closely lined with vegetation. Tick levels may be high in areas frequented by animals.
• When resting, sit on a bare rock, a ground sheet, or a vegetation-free area instead of stretching out on vegetation.
• After being in an area known to harbor ticks, make daily examinations for ticks, paying particular attention to the pubic region, the base of the skull, and the scalp. Check the backs of everyone in the group and carefully inspect any children. Clothes should be closely examined for ticks, especially near the collar, after they have been hanging overnight.
• Remove ticks promptly.
• Check pets carefully, as they are a source of entry for ticks into the house.
• Deer hunters should spend extra time checking their gear before bringing it their car or home.

 

How to remove a tick:

Many methods have been developed over the years for removing feeding ticks, which connect themselves to their host with small, barbed mouthparts. Ticks do not burrow under the skin. A number of the more drastic techniques such as using a hot cigarette, gasoline, or hot matches to induce the tick to detach itself are unreliable and may cause injury to the person involved. Ticks are most safely and effectively removed by a slow and gentle pull without twisting, using tweezers or fingers. This will normally remove the tick with the mouthparts attached.

• Remove the tick right away (if possible, wear disposable gloves when handling an engorged tick)
• Use tweezers or fingers to gently get ahold of the tick as close to the skin as possible. Don’t touch the tick with your hands.
• Without squeezing the tick, steadily lift it straight off the skin. Avoid jerking it out. Try to make sure that all of the tick is removed.
• Once the tick has been removed, clean the bite area with soap and water, then disinfect the wound with an antiseptic.
• Wash your hands with soap and water.
• If your doctor wants to have the tick tested:
• Save the tick in a container with a tight fitting top. Dampen a small cotton ball and put it into the tick container to keep the tick alive. (A live tick is necessary for culturing the spirochete, which causes Lyme disease.) Label the container with date shipped, name and address of person bitten or what type of animal the tick was from, what part of the body was bitten, and what part of the province the tick probably came from. Include the name and address of your family physician. For laboratory testing, this container should be mailed as soon as possible to : BCCDC Laboratory Services – Parasitology Section: 655 West 12th Ave., Vancouver, BC V5Z 4R4

 

If you have a tick bite:
If you had a tick bite, live in an area known for Lyme disease, or have recently traveled to an area where it occurs, and observe any of these symptoms, you should seek medical attention:

• Red, expanding rash called erythema migrans (EM)*
• Fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes.

*Some people may experience an EM rash and the general symptoms. In other people, general symptoms may be the only evidence of infection.

For more information visit the BC Center for Disease Control website at www.bccdc.ca