MINONG– Treating Lyme disease is more than just a part of the practice of Rebecca Keith, board-certified family nurse practitioner and owner of Keith Family Wellness in Minong.
“It is primarily all I do,” she said. “It’s probably 99 percent of my practice.”
Through her years of experience with it she has become convinced that the field needs earlier detection of the disease, appropriate treatment, more accurate diagnostic tests, more funding for those areas – and, critically, education for doctors and emergency room physicians on how Lyme generates such a range of differing, sometimes baffling, symptoms, often long after any first inkling that it may be present.
In Wisconsin, where Lyme is endemic, people who have been bitten by ticks should think “Lyme” if symptoms occur that have no explanation, Keith said. Chronic fatigue and fibromyalgia, for example, are clusters of symptoms that have no etiology and are often found in patients who have persistent Lyme, she said.
Teasing out what symptoms may tie into Lyme and what are unrelated can be a tricky process, and not all medical organizations agree on how Lyme should be treated or even if it can become chronic.
Lyme disease should be considered when people present with a plethora of symptoms that just don’t make sense or when a diagnosis is difficult to put together, Keith said.
Lyme disease is an infection from the bacterium Borrelia burgdorferi or B. mayonii, passed on by a deer tick that bit an infected animal such as a deer or mouse. Lyme guidelines say a tick needs to be attached (biting) for more than 36 hours to transmit the bacteria. A bull’s-eye rash is one of the initial signals of the disease, appearing within a week or two after being bitten in 70% to 80% of the Lyme cases. Some people get a solid rash or no rash. Some people report muscle and joint pain, fatigue, headaches, swollen lymph nodes, or flu-like symptoms such as chills and fevers.
The less-common B. mayonii can produce a diffuse rash rather than the bull’s-eye typical of the B. burgdorferi.
Lyme is treated initially with two to four-weeks of antibiotics, often doxycycline. Some practitioners do a Lyme disease test before beginning treatment, while others start the prescription immediately based on symptoms, with or without subsequent testing, since it can take the body four to six weeks after being bitten to develop the infection-fighting antibodies that show up as a positive on the blood test.
Sometimes a second or third round of antibiotics are prescribed.
Antibiotic treatment is standard, but how Lyme is treated if it appears to linger or it is joined by a co-infection is controversial. Some people have continuing joint or muscle aches, fatigue, pain, arthritis, and other maladies that they attribute to Lyme. “Chronic Lyme” is not generally a phrase used in the medical industry, but some practitioners call it “persistent Lyme.” Agencies such as the National Institute of Allergy and Infection Diseases (NIAID) call it “Post Treatment Lyme Disease Syndrome (PTLDS).”
‘Fact of life’
Keith hearkens to a publication printed by the Wisconsin Department of Epidemiology in 1989 that said Lyme is a “fact of life for all citizens of Wisconsin.”
“We are very, very endemic for Lyme disease in this area, very endemic,” Keith said. “And there was a study done in 2006, from the State Department of Epidemiology, and at that point, they tested the ticks north of Trego and Spooner and found 50% of the deer tick carrying the Lyme bacteria.”
Wisconsin and Minnesota are what the Centers for Disease Control calls “high incidence” states when it comes to Lyme, along with the 13 states from Maine south to West Virginia and Virginia. The CDC reports that Wisconsin had 1,794 confirmed cases and 1,206 probable cases in 2017 for a rate of 31 per 100,000 people, up from a three-year average of 26.6. High incidence is considered to be at least 10 confirmed cases per 100,000 people for the previous three years.
The incident rate in Maine and Vermont is more than 100 in 100,000.
Lyme may get all the attention, but ticks can infect people with up to 20 different pathogens so co-infections are often part of the puzzle affecting the person, Keith said.
“I’ve been treating it for probably about 10 years now,” she said. “And what we’ve noticed is that it’s not ever just Lyme disease, but it’s usually a combination of different things, including the co-infections that the ticks can carry.”
Those co-infections might include anaplasmosis, babesiosis, Lyme borreliosis, and Powassan virus.
Lyme tests are “not even close” to 100% accurate, Keith said, and research shows 30% to 70% of patients who have Lyme will not test positive for it.
“Once you’ve had it in your system for any length of time, your body really is no longer producing any antibodies to it,” Keith said. “So it’s very difficult to pick up.”
The tests were not created to be diagnostic, she added. “The tests were created by the CDC for surveillance purposes, to see where across the country we were finding pockets of Lyme.”
Some private labs have a more specific and sensitive test, she noted.
Keith believes that a clinical diagnosis can be made with Lyme: If people from an endemic Lyme area have a history of tick bites and have the Lyme symptoms, they should be treated for the disease.
She said an untreated case can lead to health issues that mimic others, such as rheumatoid arthritis, and the issues can progress without being traced to Lyme, ultimately possibly producing persistent headaches, neurological problems, and cardiac disease.
“Sixty percent of patients who have Lyme disease who go untreated may develop arthritis,” Keith said.
Even 30 years ago Lyme was found in every county in the state, and it was known that a person can die from it, that it could be transmitted from mom to fetus, that if untreated it affects every organ system of the body – including lungs, kidney, liver, spleen, brain, nervous system, and heart.
One of Keith’s defining experiences with Lyme began when her daughter, 5 years old at the time, got the disease though they did not know it for awhile.
“We just moved up to northern Wisconsin from southern Wisconsin, bought a hobby farm on 80 acres of land,” Keith said. “I don’t recall pulling a tick off of her, but they were common. And she laid on the couch for about three weeks and lost 8 pounds. And I kept taking her in [to the doctor]. I mean, she was sick. She clearly had something. Lyme wasn’t on my periphery. This was 25 years ago.
“And after that, she began to develop some pretty bad stomach issues. She ended up with irritable bowel, she lost 86 days of school one year, she developed anxiety. I had her down at Mayo [Clinic], our pediatrician said she needs to be scoped. Four days of testing $50,000, [they said] it’s all in her head. ‘Take her to see a good psychiatrist.’ I kid you not. So I’ve got a personal history with this.”
She addded, “And I can share over 300 pieces of research with anyone who would like it on psychiatric symptoms and Lyme disease.”
The Infectious Diseases Society of America (IDSA) says “if you have been treated, you are cured, and anything after that is Post Lyme Disease Syndrome and should be addressed by other medical specialty areas,” Keith said.
One of the theories on treating long-term Lyme is administering antibiotics long term.
In a statement to the House Foreign Affairs Committee for a hearing on “Global Challenges in Diagnosing and Managing Lyme Disease – Closing Knowledge Gaps” in July 2012, the IDSA said it agrees that some people who have had the bacterium killed by antibiotics go on to have what some people call “chronic Lyme,” though the idea of an active infection is “not supported by scientific evidence and, more alarmingly, the treatment of long-term antibiotic therapy will do patients more harm than good.”
“According to peer-reviewed studies,” the statement said, “these stubborn symptoms may be due to persisting inflammatory responses, by genetically predisposed individuals, to bacterial debris left in the body after the infection is cleared as well as joint damage caused by the initial infection.”
The statement said one study showed the arthritis symptoms can persist for nine years but gradually decrease and stop.
The IDSA eschews long-term antibiotic treatment, even suggesting that any success with it is anecdotal or placebo-based.
“Most cases of Lyme disease are successfully treated with a few weeks of antibiotics,” the IDSA said. “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.”
The IDSA said in the statement: “Whether long-term antibiotics benefit patients with persistent symptoms of fatigue, musculoskeletal pains and neurocognitive dysfunction has been scrutinized using the highest level of scientific evidence: four placebo-controlled randomized trials do not support the use of long-term antibiotics as an appropriate treatment for Lyme disease.”
The society added, “Further, no reliable evidence exists that supports the designation of Lyme disease as a chronic, actively infectious disease requiring ongoing antibiotic therapy.”
The IDSA says “chronic Lyme” and long antibiotic use is not supported by the “overwhelming majority of experts in the field of infectious diseases medicine in this country and abroad.”
The International Lyme and Associated Disease Society (ILADS) disagrees with the conclusions against chronic Lyme and continued antibiotic use.
“Lyme disease is a clinical diagnosis dependent on history, and physical examination, and supported by appropriate laboratory testing,” the ILADS said. “The elements of diagnosis are placed in the context of the activities and experiences of the patient, environmental exposures and risk factors, and consideration of other diagnoses that may explain or impact the patient’s symptoms. At the heart of the controversy is the relative weight given to each element that contributes to the diagnosis. ILADS’ position is that no single data point, including serologic testing [which detects the antibody against Lyme], automatically outweighs the contributions from all of the data in the patient’s presentation and evaluation.”
The ILADS said a person’s response to treatment depends on the bacteria species, length of illness, which body system is involved, co-infections, and the person’s overall health.
The organization recommends a longer initial treatment with antibiotics, generally 20 days to six weeks, and those with persistent signs of Lyme should get “individualized care that tailors antibiotic treatment to their specific situation. The duration of treatment and the choice of antibiotic or antibiotic combinations are clinical decisions to be made with several factors in mind. Long-term antibiotic therapy is not without risks, and should only proceed under close supervision.”
ILADS’ list of potential long-term symptoms of Lyme cites fatigue, cognitive dysfunction, headaches, sleep disturbances, migratory myalgia and arthralgia, numbness and tingling, neuropathic pain, depression and anxiety, and musculoskeletal problems.
ILADS said research has shown differing characteristics of those with Lyme compared to those with similar symptoms related to other medical issues.
Keith said long-term Lyme treatment is controversial because it takes “a long time to change medical paradigm,” Keith said. She cites as an example how it was known in the early 1900s that Helicobacter pylori can cause ulcers but the medical community did not recognize that research until the 1990s.
Keith said she has a list of more than 700 pieces of research, compiled by a psychiatrist on the East Coast, that talk about the persistence of Lyme disease.
“The vast majority of the patients that come to me have been seen by multiple specialty areas, including neurology, rheumatology,” she said. “Often people have stomach issues so they’ve seen gastroenterology. And no one seems to be able to figure things out. What’s really going on, what’s the underlying issue here? So these are the people that come and see me. And so a lot of them have been tested for Lyme and the test has been negative, but their health is continuing to go downhill.”
By the time they see her, she said, they have been sick a long time and “everything else has been ruled out.”
She has seen children diagnosed as infants with failure to thrive and has seen children on steroids for years for rheumatoid arthritis. She said she is frustrated because it seems to her the medical system is merely putting bandages on symptoms and not looking for the cause of the health issues.
She noted that another issue is that doxycycline works in an active spiral keto form of bacteria, so it prevents the formation of the cell wall of new bacteria. The bacteria, however, can evade detection by the immune system and take different forms, types that the doxycyclined will not kill or enter.
“So as soon as the doxycycline is out of the system,” Keith said, “if it hasn’t been effective in eradicating the bacteria initially, if we didn’t catch it soon enough, now you continue to have persister cells.”
The bacteria then can prompt different symptoms, sometimes long after the original diagnosis.
“We do know that you can have Lyme for decades and be fine,” Keith said.
By time clients go to see Keith, they have unexplained symptoms from multiple organ systems to the extent that some have been told to see a psychiatrist.
“And they usually do, but that doesn’t fix the pain, or the stomach, or the muscle or the fatigue or the lack of motivation, or the cognitive dysfunction, or the insomnia,” Keith said.
“It’s never a simple, quick fix,” she said. “It really takes awhile to figure out.”
During treatment, Keith has her patients “clean up their diet.” Some have stomach issues, for instance, that stop when dairy or gluten is eliminated.
“I’m very specific about dietary changes,” she said, “about elimination of certain foods that we know are more inflammatory in nature, supplements, always probiotics, bowels have to move. There’s a lot of things that have to be in place.”
Keith supports the long-term use of antibiotics, and she is convinced that inflammation and autoimmunity (overreacting to something) are interwoven into Lyme disease.
“So what I really want to impress here is it’s not usually just Lyme disease, it’s often the co-infections, and there may also be prior immunosuppressive health issues, including toxic mold exposure, that can be suppressing the immune system, and thereby not allowing the immune system to function like it should.”
Some people will have other problems preventing recovery, she said. “My job is to figure those out before we start treating to make sure we’re on the right track.”
Not many in the medical community specialize in Lyme, she said, and the difficulty of narrowing down symptom relief does not mesh well with the medical cost reimbursement system and the limited allotted time doctors have with each patient.
Keith said some of her patients have had Lyme for 30 to 40 years.
“ Are there points of no return, some people we can’t bring back? Yes. Not everybody is going to respond. But probably 95% of the time they will get better,” she said.
“Prevention is the most important thing that we can do,” Keith said. “But the nymph stage of the tick, which is responsible for about 90% of disease transmission, is about as big as the tip of your pen. They’re very difficult to find on your body, which is probably why most people don’t recall a tick bite.”
She recommends spraying a pyrethrin product on clothing thoroughly and letting it dry four hours. Pretreated clothing also can be purchased.
She recommends conducting thorough tick checks and wearing light-colored clothing so ticks can be seen.
“Watch those little kids because the largest age group of people developing Lyme are 5- to 9-year-olds,” Keith said. “They’re closer to the ground, they’re on the ground. They’re going to have more exposure.”
Pay attention if flu-like symptoms emerge during tick season, she said. Some people will get sick right away, but others may become infected in the summer but not have symptoms for months.
“Supporting the immune system is very, very important, and eating healthy and getting your regular exercise,” Keith said.
“And,” she added, “staying out of the woods.”
A Lyme disease vaccine was introduced in 1998, but opponents, according to the IDSA, made unsubstantiated claims about its side effects which were not backed by clinical data or trials, and the publicity sent the sales into a nosedive, forcing the manufacturer SmithKline Beecham pulled them the vaccine from the market.
A class action lawsuit had been filed against the manufacturers, saying the vaccine caused arthritis.
Keith is part of a local support group that has formed for sharing experiences and learning about research-based information.
Keith said she has hesitated to be involved in a support group because she is very busy with her practice, but several of her patients have said it would be helpful to have a support group and it is important for people to know they are not alone with their persistent symptoms that many people have.
“When it was mentioned to me that someone was willing to start this group, I felt it was good idea,” she said.
The group meets from 6 to 8 p.m. every third Thursday at the Spooner Civic Center in the even months and Jack Link’s Aquatic and Activity Center, Minong, in the odd months.
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