Silence and Denial

Waging the Lyme Wars

Robert Clark

Linnette Mullin, age 47, is a mom of four boys, a published author, and a full-time student at Columbia International University. On first impression, she appears to be a normal, healthy, and happy lady. But what is not readily apparent is the silent battle she wages each day in the form of Lyme disease, which causes her chronic fatigue, muscle pain and weakness, and various handicaps that keep her from leading a normal life.

Although she began seeing symptoms in her childhood in the 1970s, finding the diagnosis of Lyme disease took more than 30 years. She grew up exploring the Mark Twain National Forest in Missouri and was exposed to many deer ticks, so she was most likely bitten and infected multiple times in her childhood.

“I had some really strange symptoms but none that were terribly alarming for years,” says Linnette. “When I was a child, I remember one year in school, I had a stiff neck so bad that I actually had to wear a neck brace for at least a month. There were other things, like from the time I could remember fixing my hair … I would rarely put it up in a ponytail because my arms would ache so badly from holding them up above my head.”

At various times throughout her childhood, Linnette experienced flu-like symptoms, high fevers, and chronic fatigue, all at very odd times and unconnected to normal seasonal sicknesses in her community. When she was a teenager, she developed hot flashes that were unexplainable, but she was always terribly cold and was even tested for iron deficiency because of her consistent chills.

Linnette married in 1992 and had four children, but she still continued to struggle with vague, unrelenting fatigue and muscle pain. She was diagnosed with fibromyalgia in 1998 when her health grew more and more concerning. “I got extremely ill,” she says. “It took me four years after that to go from being bedridden about 80 percent of the time to functioning about 80 percent of the time, but I still dealt with fibromyalgia and fatigue.”

It was not, however, until the birth of her fourth son in the winter of 2006 that she started getting so sick that she became truly worried. “I had the feeling that this was not going to end well,” recalls Linnette. “So I went back to my doctor and told him I was going downhill really fast. And he looked at me and said, ‘I think you have Lyme disease.’”

The story of prolonged, life-crippling symptoms and misdiagnoses leading to a deeper health decline is typical of many Lyme disease patients. According to the Centers for Disease Control and Prevention, about 329,000 cases of Lyme disease are reported each year in the United States, but many experts feel that number is far below the actual rate because many people suffer through a wide range of symptoms that often go undiagnosed and untreated. And while it has grown in awareness in the medical world and general public, many common misconceptions and lack of knowledge exist, leading to many patients suffering for years without any help.

For starters, many assume that Lyme disease began in the 1970s as a brand new illness in Lyme, Connecticut, and that it is a purely regional disease caused only by ticks from one limited strain of Borrelia, the bacteria that causes Lyme symptoms. Another myth is that the person infected with Borrelia will always develop a rash and flu-like symptoms immediately after being infected.

However, the actual facts are much more complicated. “Lyme disease is hard to put into black and white,” writes Dr. William Rawls in his book Unlocking Lyme. He is a leading medical professional for the disease who has also battled the disease himself. “It is mostly a big grey zone when it comes to definitions, and nothing about Lyme disease can be considered classic.”

In fact, the bacteria that causes Lyme disease in its simplest form, Borrelia, has been present for thousands of years. In 2012, a 5,300-year-old ice man mummy studied by scientists at European Institute for Mummies and the Iceman at the European Academy of Bozen was shown to have been infected by Borrelia when he died. And in 2015, Oregon State University found an ancestral bacteria of Borrelia in ticks embedded in amber that was more than 15 million years old.

While it was originally thought that only one type of Borrelia could cause Lyme, scientists have found more than 20 strands of Borrelia over the past few decades, and at least 12 of them can cause Lyme symptoms, according to Dr. Rawls. In various studies, such as one conducted at the Pomeranian Medical University in Poland in 2007, Borrelia has also been found to be carried by mosquitoes.

As to symptoms, the target-like rash associated with a Lyme-infested tick bite only happens about 30 percent of the time, so many people will get a tick bite infected with Lyme bacteria without realizing it. Even if people do have a tick bite with strange symptoms and get tested for Lyme, current Lyme tests are notoriously bad at finding Borrelia in the body; thus, a patient may have Lyme but still not get diagnosed with it.

“[Borrelia] levels tend to peak 60 days after infections and then drop to low levels in the system,” explains Stephen Buhrer, author of Healing Lyme and a leading advocate for the disease. “Numbers may be so low that they do not show on even the most sensitive tests; they cannot be found even with a biopsy.” Additionally, both Buhrer and Dr. Rawls note that Borrelia can encyst when it feels threatened, boring deep into the host’s tissue and encasing itself in a protective shield that can make detection nearly impossible, and it can do so for up to two and a half years.

If it sounds like a nightmare, it is. A growing one at that. In the summer of 2017, record infections of Lyme were predicted due to rising tick populations in the United States, and some experienced doctors have even called Lyme a pandemic. Prominent celebrities like Avril Lavigne, George W. Bush, and Ben Stiller have all been diagnosed with Lyme.

Despite the continuing growth of the disease, people who suffer from Lyme are often caught in the crossfire of misunderstanding from the medical community, insurance companies that refuse to give adequate treatment or acknowledge Lyme, as well as general lack of awareness from the public.

Jenny, whose name has been changed for privacy, has lived in Columbia for 10 years. Four years ago, she was bitten by a tick while visiting North Carolina.

“I actually found the tick on myself,” she says. “I was told to look for flu-like symptoms, and I did not get those symptoms right away.” She never had a rash, either. However, six months after the tick bite, she began to experience excruciating headaches. Her doctors were treating her for cluster migraines, but her symptoms continued to get worse.

“My body had already had so many side effects,” she describes. “Joint pain, inflammation, vision impairment … lots of different things that Lyme disease attacks.” It would take multiple doctors before Jenny found one that could properly diagnose and treat Lyme.

Diagnoses are complicated by Borrelia’s cunning ability to manipulate the host’s immune system in a myriad of ways that often mirror other issues and diseases, according to Dr. Rawls. The bacteria can cause inflammation of the person’s immune system in a number of ways. In the most simplistic terms, Borrelia tends to attack collagen-rich tissues, like joints, the brain, and muscles, especially the heart, but it can cause a range of symptoms from depressive mood swings to a vast array of other neurological issues.

Borrelia is also often accompanied by a myriad of co-infections that also bring their own set of symptoms, such as mycoplasma, a microbe that causes very similar symptoms as Borrelia because of its same desire for collagen-rich areas; Bartonella, which infects white blood cells and can manifest bizarre symptoms such as massive rage and mood swings and a burning sensation in the heels, as well as liver, eye, and heart; and Babesia, which is a distant cousin of malaria.

“Lyme … can mimic nearly every complex disease known, including diseases that can occur in many different organs,” Stephen Buhrer summarizes aptly in Healing Lyme.   

This is why, according to Jenny, it is absolutely essential to seek out a Lyme Literate Medical Doctor if you know you have been exposed to ticks or have odd symptoms no one can diagnose. “Most of the doctors that you see will diagnose it as fibromyalgia, or lupus, or those types of things,” she says. “So that’s why it’s very important to get a doctor who knows to test for those co-infections and other things.”

In general, most LLMDs agree that antibiotics are usually helpful only with acute Lyme when symptoms are so bad they are life threatening or when a patient has just received a tick bite and needs to kill the bacteria off quickly. For chronic Lyme disease, where symptoms have lasted for years and the infection is deeply embedded in the patient, prolonged antibiotics can exacerbate the situation and cause more harm than good.

A variety of alternative methods can be implemented that have seen success, such as diet overhauls, herb remedies, stress management tactics, and a myriad of other lifestyle changes. However, every single patient is different, and no Lyme protocol works for everyone. Finding an effective treatment may require months or even years.

Linnette and Jenny assert that more work needs to be done to raise awareness about the disease, as well as more research and advocacy for finding effective cures for patients who have suffered. It is also crucial that anyone who has Lyme combat the disease through self-education around diagnoses and treatment, as well as find a LLMD who is well-informed about modern practices and research about the bacteria and other correlating issues. A multi-faceted approach to treatment that does not just rely on one source for healing is vital.

“If nothing else, if your mother, sister, child, or friend gets a tick, the best course of action is to make sure that your doctor treats it immediately,” says Jenny. “And you’re going to have to push it hard, because people are still uninformed about Lyme disease. Most people go, ‘Oh, we don’t have that in South Carolina. Oh, that’s not a prevalent disease here.’ But it is. It’s everywhere.”

Support from the individual’s family and friends is also important. “Emotional support is crucial,” says Linnette, who lives a very limited lifestyle due do the chronic effects of the disease. But she refuses to let Lyme define her entirely. “If they’ve been given a Lyme diagnosis, no matter how difficult it is for you to believe it because you can’t see it, it’s very crucial for you to be there for your friends or your relatives who have it.”

Lyme is a cruel disease that often leaves people feeling alienated and misunderstood because symptoms remain largely unseen to the onlooker. “We tend to be very private,” Linnette adds. “We’re so vulnerable. Sometimes it’s hard to even let people into our homes. So any type of support is huge.”