Med J Aust 2017; 206 (7): 320-324. || doi: 10.5694/mja17.00090
Summary
Tick bites in Australia can lead to a variety of illnesses in patients. These include infection, allergies, paralysis, autoimmune disease, post-infection fatigue and Australian multisystem disorder.
Rickettsial (Rickettsia spp.) infections (Queensland tick typhus, Flinders Island spotted fever and Australian spotted fever) and Q fever (Coxiella burnetii) are the only systemic bacterial infections that are known to be transmitted by tick bites in Australia.
Three species of local ticks transmit bacterial infection following a tick bite:
the paralysis tick (Ixodes holocyclus) is endemic on the east coast of Australia and causes Queensland tick typhus due to R. australis and Q fever due to C. burnetii;
the ornate kangaroo tick (Amblyomma triguttatum) occurs throughout much of northern, central and western Australia and causes Q fever; and
the southern reptile tick (Bothriocroton hydrosauri) is found mainly in south-eastern Australia and causes Flinders Island spotted fever due to R. honei.
Much about Australian ticks and the medical outcomes following tick bites remains unknown. Further research is required to increase understanding of these areas.
**Comment**
The key phrase: Much remains unknown. Truer words were never spoken.
Peter L. Salgo, MD: What are we looking for going forward 10 years from now? What is the future of Lyme disease management, whether or not it be testing improvements?
Robert C. Bransfield, MD, DLFAPA: I would think, eventually, you see a trend towards more DNA-based testing platforms that may evolve. I think, eventually, there would be better testing that would help. The question of vaccines, that has been something that people have been struggling with for a long time. One interesting thing is vaccines against ticks themselves, because there have been a lot of problems with the vaccines so far. I think that of those different things that are being considered, that’s probably the best option. So, it has been very hard to develop a vaccine. Just like a vaccine against the common cold. It may not be possible. I would love to see it happen.
Samuel Shor, MD, FACP: One of the major problems is, even if you have a good vaccine for Borrelia, what do you do about the co-infections? And more and more ticks are co-infected.
Leonard Sigal, MD: That’s why, going back to your anti-tick idea, there’s a wisdom commonly shared: the more erythema, the more redness and inflammation you develop at a tick bite site, the less likely you are to actually get infection.
Samuel Shor, MD, FACP: More robust immune response.
Leonard Sigal, MD: And so, that goes back to your comment. If you could come up with a tick saliva vaccine, not only would you cover Borrelia burgdorferi, but you’d also cover coinfections as well.
Robert C. Bransfield, MD, DLFAPA: And I also think there’s a trend towards looking in the microbiome— the tick microbiome, the human microbiome—and that’s part of disease. It’s not like you can ever just get rid of all infection in the body. It’s the microbiome that’s within us, and that’s, I think, becoming a broader area in psychiatry and general medicine with chronic illness: to look at chronic infections and the microbiome, and some of these infections are good for us.
Peter L. Salgo, MD: We’re going to get guideline changes going forward?
Patricia V. Smith: Yes. I think we need to get guideline changes, and the reason that we need to is because, even though I know the IDSA is coming out with their guidelines in early 2018, my understanding is they didn’t last time—and I’m guessing that they won’t this time—include anything for patients with chronic disease or post-treatment Lyme, whatever you want to call it. And so, that is very problematic, the same way with the CDC MMWR article. The way they have, in a little box in the side of the article, put in that they do not recommend any antibiotic treatment or IVIG treatment for chronic Lyme because, of course, we know chronic Lyme doesn’t exist. So, now you leave a whole plethora of patients out there without any kinds of options. They’re not allowed to have alternative medicine and they’re not allowed to have extended antibiotics, which are not alternative medicine. Tuberculosis patients get treated for 2 years with IV antibiotics.
Leonard Sigal, MD: And there’s a reason for that, Pat. There’s a reason for that, and that is the lack of really rigorous science in support of those approaches.
Patricia V. Smith: I agree with you.
Leonard Sigal, MD: What I’d like to see is cooperation between the 2 ends of the spectrum, proper studies.
Patricia V. Smith: I’m totally in favor of that.
Peter L. Salgo, MD: I need to stop right here. I’m going to go around and everybody is going to get a last word. You’re going to get it, too. Dr. Bransfield, start. This is your shot.
Robert C. Bransfield, MD, DLFAPA: So, William Osler, the father of medicine, once said, “To know syphilis is to know medicine.” But I think we could look at that in terms of Lyme disease, and to know Lyme disease, you really have to know not just medicine, but also psychiatry, entomology, epidemiology, immunology, psychoimmunology, rheumatology, and politics.
Leonard Sigal, MD: Throw cardiology in as well.
Robert C. Bransfield, MD, DLFAPA: And cardiology. You need a broad capability that’s beyond the training of most people. So, the big thing we have to add is some humility. We can’t have arrogance. We have to know that a lot of the answers to this are outside our field of specialty, so we have to have open dialogue, open communication like we’re having here, and that’s what will help resolve this.
Peter L. Salgo, MD: Dr. Shor?
Samuel Shor, MD, FACP: Well, it’s important, I think, to recognize that chronic active Borrelia infection exists. What is most contentious is this post-treatment component, which I’ll get to in a second. But what is often disregarded are those who never get diagnosed and are untreated. We have an expanding tick population, and the percentage of ticks are increasing that are actually infected. The majority of patients never recognize they’ve been bitten by a tick. There’s a large percentage of them who don’t have the hallmark feature EM rash, and if they do, it’s often in a hidden place, or it may be atypical. They present with common symptoms—summer flu. Then, throw in the post-treatment group that can potentially present in similar manners with chronic disease. We’ve already alluded to that there’s good evidence of persistence after requisite antibiotics. Not everybody who’s chronically ill after treatment has active infection, but I would argue that a modest percentage do. And so, we need to be empathetic in dealing with this chronic fatigue, chronic pain, and cognitive impairment, this complex group of individuals who, unfortunately, because of poor lab testing and the politicization of this condition, are often peripheralized.
Peter L. Salgo, MD: Dr. Sigal?
Leonard Sigal, MD: In clinical medicine, have an open mind and an open heart. To rephrase what you were saying, we have to have humility, absolutely. We don’t know everything. We have to be open to the possibilities of it being Lyme disease, being another infection, being something else entirely, being immune meditated or inflammatory mediated. You have to be aware of all the potential mechanisms, and you have to be humble in the sight of all these competing potentials. You have to have an open mind and ultimately, even if I can’t make a diagnosis, the person who’s sitting in front of me is suffering. And to show that person the door without any sense of what we’re going to do next is cruel and should not be the practice of any physician. So, an open mind, open heart, clinical practice, and better science. We need to stop arguing with each other, and we need to stop pointing fingers, and we need to be able to move on and say, ultimately, that the only important thing is the patients are suffering. Ergo, I agree: power, I agree; money, I agree. We have to throw out those things and get beyond ourselves and sit down and come up with the studies, mutually agreeable studies, that will allow us to come up with biomarkers; better sero-confirmatory tests, they’re not diagnostic tests; and better approaches to therapy. Anything short of that is an abdication of our primary responsibility, which is to practice scientific and empathic medicine.
Peter L. Salgo, MD: And I promised you the last word.
Patricia V. Smith: You did.
Peter L. Salgo, MD: And I’m keeping my promise. Go ahead.
Patricia V. Smith: I want to speak to the fact that, for many decades now, patients and advocates have been left out of this process of Lyme disease. And by that I meant they’ve been excluded. Other diseases have had committees for years that have sat in Washington, and they’ve sat with these working groups, and they’ve been able to have input on their diseases. Patients have been totally excluded. It’s very frustrating for them. It has caused, in my opinion, some of this bad science, because the educated patients know what kind of studies they need to help them with their disease. They just want to get better. They don’t care about these arguments, they want to get better. They’ve never been able to sit down like this.
So, finally, I’m pleased to say that last year we were successful for the first time, after a lot of opposition from the IDSA and others over the years, in getting legislation passed and included in the 21st Century Cures Act. That provides a working group that—there’s a working group now in Washington—only includes federal officials at the table. They have been making all the decisions for patients. That is really outrageous. And so now, patients, because of the way we set this up, will have a seat at the table, perhaps an advocate, or a member of a Lyme organization will have a seat. Our treating physicians who have never had any input into this process—guess what they’re going to be doing. They’re going to be working with all the different agencies to find out what the resources are that are available for research, what kinds of studies need to be done, and it’s also going to be done in a transparent fashion, whereas now it’s behind closed doors. No one knows what research is selected until after it’s done, and then you have no say in the matter. I just say for Lyme patients, the time has come when they will get a seat at the table, to be able to have input about their disease.
Peter L. Salgo, MD: Alright. Well, thank you all for being here. You can all take off your flak jackets and your helmets. This has been a tremendous discussion, one of the best in my career, and I’m glad we all got at the same place at the same time to discuss what has been one of the most contentious issues in modern American medicine. On behalf of our panel, I want to thank you for joining us, and I hope you found this Peer Exchange® discussion to be useful and informative. I’m Dr. Peter Salgo, and I’ll see you next time.
Most visitors go to the Alsace region of France to drink its fine white wines and to Lorraine for its ornate architecture. I went to see if the French are dealing with Lyme disease better than we are here in Massachusetts and across the U.S.
Last September, Francebecame the first country to release a national plan to address tick-borne diseases like Lyme. It ranges from ramped-up surveillance of ticks and infections to better treatment protocols and diagnostic tests.
In May, Canadareleased its own federal action planto address Lyme. In the United States, we have at least 10 times more cases of Lyme than France or Canada:over 300,000 cases annually, compared to about 33,000 in France and probably less than 10,000 in Canada. But we lag far behind on concerted national action, even as the problem of tick-borne diseases continues to grow.
So what can we learn from the French? A lot, I concluded. The officials, doctors and researchers I spoke with there emphasized that their national plan is still evolving. But already they are launching a sweeping initiative to tackle Lyme disease as a major public health problem.
An All-Hands-On-Deck Approach
Tune in to French radio this summer and you might hear this: Birds chirping, footsteps crunching on forest leaves, and a woman asking, “Ehhh, have you thought about protecting yourself against ticks?”
“C’est bon,” her male companion responds jovially. “The little beast won’t eat the big one.”
The woman shares a few anti-tick tips to avoid catching la maladie de Lyme, and the spot finishes up with a slogan: Against ticks — tiques in French — “to be watchful is to win.”
The 30-second spot from France’s public health agency is one of many on the airwaves this summer; others include experts answering questions about ticks and Lyme disease itself.
You’ll also find posters detailing how to prevent tick bites in pharmacies, medical clinics and even the Alpine Club of Nancy, housed in an art nouveau building just off the famous Place Stanislas downtown.
One of the new French signs warning of ticks at forest trailheads. (David Scales for WBUR)
At the entrance to forests in eastern France — in Kintzheim in Alsace, or La Haye in Lorraine — you’ll find more “beware of ticks” signs, with tips on what to look for and how to remove them.
France doesn’t have a magic prevention toolkit. In fact, much of what they’re doing — education, tracking ticks and counting Lyme cases — is similar to what we do, some of it at the federal level and some of it piecemeal, at the local level. They’re just doing much more of it, more thoroughly and robustly, than we do.
And they don’t need to rely on local public health heroes, as we often do in the United States. Here in Massachusetts, the heroes include Larry Dapsis, the entomologist for Barnstable County, who spends the spring and summer doing 70 tick-borne disease workshops up and down Cape Cod. Or Catherine Brown, the state public health veterinarian, who finds time among her innumerable responsibilities to also teach the public about Lyme. Their personal passion is key because their tick-related work runs on a shoestring.
France, in contrast, is putting strong systems in place and attacking the problem from multiple angles — coordinating between government agencies and recognizing that the complex problem of Lyme disease requires multiple simultaneous solutions.
“If we do a good job at prevention, we’ll have fewer patients who end up seeking care and struggling in the medical system,” said Lucie Chouin, a public health official for the Greater Eastern region of France. “For me, prevention is part of a package; if we only do so much, and do not do anything upstream, the problem won’t be resolved.”
And France is allotting the money to take that holistic approach. Though it does not specify a budget, the national French plan sets the priorities at high levels of government. The then-minister of health herself, Marisol Touraine, announced the release of the national plan this past September.
2,000 Forest Signs
Take education. Along with those radio spots and posters in the northeast of France, the government is paying to educate hundreds of doctors and place thousands of pamphlets in medical offices. At the cost of about 1,000 euros each it’s placing 2,000 of those “beware of ticks” signs across the country.
Tick and Lyme disease prevention posters and pamphlets from France. (Jesse Costa/WBUR)
That is a much more sweeping and energetic program than I’ve seen in the Lyme hotbed of Massachusetts, which leaves most Lyme disease issues to local officials. The state produces free educational materials, but it’s up to towns to use them. If a town wants to go beyond education — which experts think will be required to turn the tide against tick borne illnesses — they need to drum up the cash. So far, few towns do.
Compare that to what the all-hands-on-deck approach against Lyme looks like in France. Initiatives there, in addition to better educating the public, include:
Public health “Regional Intervention Units” to track Lyme and tick-borne diseases better, including an ongoing multi-year study of the number of Lyme cases in the Lyme-heavy northeast region
The Agricultural Social Mutual Fund, a social security system to protect agricultural workers, is supporting pamphlets and a push to pinpoint tick hot spots
And the medical system and the public health department are doing most of the heavy lifting to carry out the national plan
Pragmatic Science
Here’s something else France has that we don’t: an app that lets everyone report tick bites on themselves or their pets. It’s called Signalement Tique and was just released by the National Institute for Agricultural Research in July.
A screenshot from new French app for tracking tick encounters. (Courtesy Joseph Koehly)
The app is just one of many French initiatives under way to improve research on ticks and Lyme. The national plan puts heavy emphasis on practical research, and the ecology research that is crucial for fighting Lyme does not fall through funding cracks as it does here in the U.S.
Here, about two-thirds of our annual Lyme research spending is on basic biology. Research budgets tend to be smaller in France, but the emphasis is also different — more focus on projects that have immediate practical applications, such as identifying local tick hotspots or tracking what proportion of ticks carry diseases.
“We get money from time to time, and we’re used to working with less money for basic research,” said Benoit Jaulhac, an expert on Borrelia — the Lyme bacterium — and director of the National Reference Center for Borrelia in Strasbourg, where all French Lyme researchers are located. (No, we don’t have one of those either.)
But because some funding comes from the Institute for Public Health Surveillance, much of their research must yield “immediately applicable information,” Jaulhac said, such as tick-tracking and diagnostic tests. Few resources go to tick-tracking here; public health official argue that it is because tick numbers can vary dramatically from spot to spot, but another reason is that most simply don’t have the money for it.
Some particularly intriguing French research still in the planning phase: a study on what happens to people who get tick bites, looking not just at tick-borne illness but at whether the tick bites themselves could make people chronically sick over time.
The National Borrelia Center is also working with the the National Institute for Agricultural Research on tick surveillance and ecology research to figure out what could stem the tick invasion. In the U.S., the focus on basic biological research leaves ecologists often struggling to find grants to fund their tick-borne disease research.
Months Of Medical Care In A Day
Abdel Hafiz Abid can remember the exact day he became ill: July 5, 2014. He started to feel pain in his left leg, and particularly his ankle. At first it was occasional, but soon it afflicted him every day, and extended to his knees and back. He was also beset by fatigue — “Walking 200 meters feels like I’ve walked 25 kilometers,” he said — and by problems with short-term memory.
Family members suggested he had Lyme disease. “We vaguely talked about it, like everybody else,” he said. A number of them have that diagnosis, and he lives outside the city of Metz, in the Lorraine region of northern France, which has one of the country’s highest rates of Lyme.
The testing began. In a 2-inch black notebook, Abid keeps multiple yellow folders from each different laboratory and clinic he’s visited on his quest for a diagnosis. He’s been to clinics in France and one in Germany, spent thousands of euros outside what the national health plan covers, and tried multiple courses of antibiotics, some as long as six months. So far, nothing has worked.
So he came recently to Nancy, the biggest city in Lorraine, to spend the day at a new multi-disciplinary Lyme disease clinic run by Dr. François Goehringer, an infectious disease doctor.
“Ten years ago we used to say, ‘It’s not Lyme, we don’t know what it is,’ and they left our clinic with us saying, ‘We know you’re sick, but we don’t know what it is, au revoir, monsieur, au revoir, madam,'” Goehringer explained. Patients would then bounce from specialist to specialist getting different, confusing answers.
“We decided we could gain a lot of efficiency by trying to offer a day of hospitalization at the center of our approach,” he said. “The maximum of complementary exams and specialist advice to be able to weigh in on what the patient is suffering from.”
There are many specialized Lyme clinics in France and in the United States as well. What makes the Nancy clinic stand out is that one-stop shop organization. For a day, patients come to the hospital, get all the tests and scans, see various specialists and get started on treatments that fit their diagnosis.
Goehringer and his intern, Dr. Marie Geisler, go through Abid’s black folder in detail, reviewing all prior test results and consultations. Geisler sits with Abid to fill out the 10-page “Multidisciplinary Diagnostic Approach for Patients Suspected of Lyme,” a standardized questionnaire. There’s a cognitive assessment as well. Geisler then does a thorough, 30-minute physical exam, an EKG, and reports her findings to Goehringer.
Almost all of Abid’s tests for Lyme and other diseases are negative, except one 100 euro test from Germany that often returns false positives. His western blots, which would confirm the presence of proteins related to the Lyme bacteria, are all negative.
Dr. David Scales, left, with Lyme disease clinic staff Dr. Francois Goehringer, center, and Dr. Marie Geisler. (Courtesy)
“He has no objective evidence of Lyme,” Goehringer said after reviewing all the files. But Abid’s parathyroid hormone — which controls calcium and bone health — is elevated. It could be an explanation for some of Abid’s symptoms. Endocrinologists aren’t part of the Lyme clinic, but Geisler books him for a rapid follow-up appointment to check into it.
Like all patients who come to the clinic, Abid also sees Lorraine Callins, a psychologist who specializes in chronic illness and hypnotherapy. Many of her chronic autoimmune disease or hemophilia patients “feel abandoned by medicine, so they seek other roads,” she says.
If his symptoms warranted it, Abid would also have seen a rheumatologist or neurologist – common specialties for people with suspected Lyme symptoms.
Goehringer sees only four patients every Friday and has seen about 100 patients total since the one-stop-shop program began in January. He also aims to start a monthly meeting of various specialists to develop plans for some of the most challenging patients.
Some American clinics hope to organize similar one-stop shops. But since we have a fee-for-service system, expensive specialists are difficult to organize unless there is sufficient patient volume. It’s not impossible here, but it’s quite a financial challenge.
France faces its own challenges: The national Lyme plan aims to improve medical care, including with clinics like Goehringer’s, and sets ambitious targets to develop standardized treatment guidelines by the end of 2017. That appears unlikely, with doctors and Lyme advocacy groups still far apart on what the guidelines should be.
But while standardized guidelines are in the works, the Nancy clinic will at least offer a respite for patients who have spent months seeing myriad specialists in search of a diagnosis.
Will it improve outcomes? It’s too early to tell, but at least from the patient’s point of view it’s a step forward as it streamlines what is usually a months-long process into a single day.
Crossing Cultures
Maybe my starting point — What we can learn from the French? — wasn’t a fair one. We have deeply different health systems that reflect different cultures. France provides some of the best overall health care in the world and has a long tradition of viewing health care as a right, even enshrined in their constitutions.
It also has a national health system that pays for medical care. In this cultural context, spending on public health and prevention isn’t just seen as the right thing to do, but a way to reduce health costs later.
In contrast, in the U.S. we spend the most money on health care per person in the world, but don’t get more bang for our buck.
There are some hopeful signs of support for our fight against Lyme disease: The U.S. federal government has recently committed $40 million to create four regional centers of excellence for vector-borne diseases — which include Lyme — as part of its efforts to control the Zika virus.
But most of that money is expected to go toward fighting Zika, so it will likely do little to help fill the public health funding gaps that are leaving us far behind France in the fight against Lyme.
Reporting for this project was supported by the Pulitzer Center for Crisis Reporting. Dr. David Scales, MD, Ph.D. is an internal medicine physician at Cambridge Health Alliance and an instructor at Harvard Medical School. His doctorate in sociology included examining national flu pandemic preparedness plans while at the World Health Organization. He can be found on Twitter @davidascales.
This segment aired on August 16, 2017.
**Comment**
All the tests in the world may not diagnose Lyme/MSIDS. Lyme and the coinfections that typically tag along are some of the most complex pathogens known to man and defy testing again and again. Without a doctor’s sound, educated clinical judgement, tests for TBI’s are abysmal at best and miss over half the cases. https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/.
The 40 million going to regional centers for excellence in the U.S. needs to be watch-dogged as the author is correct in his statement that the preponderance of that money will be ear-marked for Zika, a disease that has caused 254 symptomatic cases of which 251 are from travelers returning from affected areas (outside the U.S.), 0 cases through presumed local mosquito-borne transmission, and 3 cases acquired through sexual transmission. https://www.cdc.gov/zika/reporting/2017-case-counts.html The CDC currently is estimating over 300,000 new cases of Lyme Disease EACH YEAR and the true number to likely be much higher. https://www.cdc.gov/lyme/stats/humancases.html
LDA/Columbia 18th Annual Lyme CME Conference Lyme & Tick-Borne Diseases: What Clinicians Need to Know about an Expanding Epidemic
Sept 23-24, 2017
Hilton Penns Landing, Phila., PA. Hotel info
Looking for the real facts on Lyme disease and other tick-borne diseases− what’s happening with coinfections such as Powassan, B. miyamotoi and with Bartonella? What’s new with rickettsial diseases and with tick bite causing meat allergy? Why do Lyme patients often have low blood pressure–how does Lyme affect the heart, breathing, and digestive process when the autonomic nervous system is disrupted? Can Lyme cause optic neuritis? How does inflammation from Lyme affect the brain and how can it be treated? Biofilms and persisters, what are they and are they causing chronic Lyme disease? What are some prevention strategies and have we learned new information from big data?
Pre-Conference Video, Approx. 3.5 Min
The conference is designed for doctors, nurses and researchers. Those who register for CMEs and CNE’s may receive credit, and the public is also invited to register. An included reception will enable conference attendees to network with the conference faculty.
Thanks to support from the Steven & Alexandra Foundation and IGeneX Labs for this conference.
Summary