Archive for the ‘Ticks’ Category

Man Dies of Babesia

http://6abc.com/video/embed/?pid=2444383“>http://6abc.com/video/embed/?pid=2444383  (video here)

http://6abc.com/health/husband-dies-of-disease-caused-by-deer-tick-in-bucks-co/2440066/  By Ali Gorman, R.N.  

Husband dies of disease caused by deer tick in Bucks County

 A Bucks County woman is sharing the story of how she lost her husband to a disease she’d never heard of, and is spread by ticks.

Crissy Naticchia is still in shock. Her fun-loving husband Jeff died nearly two months ago from an infection spread by a tiny deer tick.

“It’s going to be a long, hard road ahead. I mean we had so much to do. He was only 50,” she said.

In late July, Jeff came down with a fever, sweating and fatigue. At the hospital, Crissy says it took several days for doctors to make the diagnosis. It was Babesiosis.

Doctor Neil Fishman with Penn Medicine didn’t treat Jeff, but he specializes in infectious diseases.

He says Babesiosis is transmitted by the same tick as Lyme disease.

Many people infected won’t have symptoms, but for others they will.

“The problem is the disease can get very severe if people don’t have a normal immune system,” Dr. Fishman said.

That includes people on chemotherapy, transplant recipients, elderly and anyone without a spleen.

Crissy says Jeff had his spleen removed as a child, but it never caused any problems.

“In 26 years, he’d been sick maybe twice,” she said.

Now she and their children Nicole and Max are hoping to raise awareness about Babesiosis.

It’s considered reportable, and tracked by many state health departments including, New Jersey and Delaware, but not Pennsylvania.

Doctor Fishman says it’s relatively rare in the state, but could be emerging.

“As you said we are seeing more and more Lyme disease in certain parts of the state, so we may start to see an increase in babesiosis,” he said.

Crissy added, “We live in Bucks County, across from a state park, there’s ticks everywhere. I want people to know, it’s not just Lyme. There’s other horrible diseases that are carried by ticks.”

The best prevention is insect repellent with DEET, long pants or sleeves, and to check your body for ticks after you’ve been outside in a park or in the
woods.

In the case of Babesiosis, if ticks are removed within 24 hours, they can’t transmit the disease. However, there are other tick-borne illnesses that can be spread faster. (Please read comment at end of article)

It’s always a good idea to consult with your physician if you have any concerns.

—————————————————————————————————————————————–
**Comment** 

A couple of things:  the lack of a spleen was this man’s undoing.Risk factors for severe disease include:

Do not have a spleen (up to 20% mortality)
Weak immune system (AIDS, corticosteroid therapy, malignancy with therapy, multiple stealth microbe infections at one time)
Elderly (>50 years old, especially with health problems)

As to removing a tick within 24 hours not transmitting Babesia – well that’s a crock of hooey.  Show me the studies and I will find a hundred people who defy them.
Rather,
The claims that removal of ticks within 24 hours or 48 hours of attachment will effectively prevent LB are not supported by the published data, and the minimum tick attachment time for transmission of LB in humans has never been established.
Additionally ticks carry many other diseases including tick-borne encephalitis, human granular ehrlichiosis, babesiosis, bartonellosis, and others. The attachment times for transmission of many of these are unknown, though there is evidence that some are transmitted very quickly.
The challenge with these studies, and there are many, is that most placed multiple ticks on multiple rodents. Multiple ticks may be transmitting different pathogens. It has also been shown that ticks feeding on mice coinfected with B. microti and B. burgdorferi were twice as likely to become infected with Bb compared to B. microti, suggesting that coinfection can amplify certain pathogens – which is another reason to only use one rodent and one pathogen to separate out multiplying factors that muddy the waters. Also, rarely do studies record the titer of both tick and host – again, making it nearly impossible to determine what’s what. It was also noted that transmission times are unknown for many pathogens.
**And as always: if you are the ONE person who contracted Lyme Disease in 10 minutes, all these numbers are essentially meaningless. The frightening truth is that these numbers, along with geographical information regarding tick habitats, are often used against patients. It is beyond time for doctors to listen, educate themselves, and treat patients with the respect they deserve – not to mention it’s time for them to treat patients clinically and not based on tests that are wrong over half the time and with the knowledge that ticks are spreading everywhere and bringing the pathogens with them. (In other words, throw the maps away!)
The review essentially gives the following transmission times for various pathogens. Again, please know these numbers are not definitive and many, many cases have proven this fact.
Take each and every tick bite seriously and don’t mess around and take a “wait and see approach.” There is too much at stake.
 There is so much we don’t know for certain and peoples’ lives are at stake.  To claim to be all knowing would be foolish.  Far better to plainly state, “Ticks are nature’s dirty needles.  The quicker you properly get that sucker off the better, as there is much we don’t know about transmission times!”  

Calling All Wisconsinites

Dear Wisconsinites, would you please contact your US Representative and ask them to join the Lyme Caucus?

The Lyme Caucus is a bi-partisan group working together in Congress to take action on Lyme & tick-borne diseases. Under the leadership of Congressmen Chris Smith (NJ) and co-chair Colin Peterson (MN), it has initiated letters and actions to benefit Lyme patients, such as the inclusion of the monies for Lyme & tick-borne diseases into the Congressionally Directed Medical Research Program (CDMRP) and language and Lyme monies into Appropriations and to initiate favorable legislation. Additionally, it has queried government agencies over policies not favorable to patients. This has reminded the agencies that someone is looking over their shoulder. Many meetings have been held and educational sessions in DC for Congress.

If your US Representative or any US Representative who serves the state your group serves is not own the list below, contact him/her immediately and ask why not.

Remind them Wisconsin is 6th in the nation for LD and a hot spot for Anaplasmosis.  The Lyme disease tick is now found in 50% of US counties and there were almost 400,000 new cases in 2015, 30% of which are children between 0-19. There are about 20 tick-borne diseases now in the U.S. being spread by at least 8 different ticks, not just the blacklegged/deer tick.

Give them a simple task: Sign-on today to the House Lyme caucus! To sign on they can write:
Marisa.Kovacs@mail.house.gov Rep. C.Smith office OR
Tamir.Elnabarawy@mail.house.gov, Rep. Peterson office

Tell your Representative you will be calling back in a week to see if he/she signed up. Then do so!

List of Current House Lyme Disease Caucus:

Christopher H. Smith (NJ-4) Co-Chair

Collin C. Peterson (MN-7) Co-Chair

Lou Barletta (PA-11)

Michael E. Capuano (MA-7)

Steve Cohen (TN-9)

Gerald E. Connolly (VA-11)

Barbara Comstock (VA-10)

Ryan Costello (PA-6)

Joe Courtney (CT-2)

Diana DeGette (CO-1)

John Faso (NY-19)

Eleanor Holmes Norton (DC)

William R. Keating (MA-9)

Joseph P. Kennedy III (MA-4)

Zoe Lofgren (CA-19)

Sean Patrick Maloney (NY-18)

Congressman Tom Marino (PA-10)

James P. Mc Govern (MA-2)

Congressman Seth Moulton (MA-6)

Scott Peters (CA-52)

Chellie Pingree (ME-1)

Mark Pocan (WI-2)

Bill Posey (FL-8)

Tom Reed (NY-23)

Carol Shea-Porter (NH-1)

Glenn Thompson (PA-5)

Paul Tonko (NY-20)

Robert J. Wittman (VA-1)

To find your representative:  https://www.house.gov/representatives/find/

More about the Caucus:
The bipartisan Congressional Lyme Disease Task Force, co-chaired by Rep. Chris Smith (R-NJ) and Rep. Collin Peterson (D-MN), is dedicated to educating Members of Congress and staff about Lyme and other tick-borne diseases, as well as advancing initiatives that are designed to help the estimated 400,000 Americans who develop Lyme disease each year and all of those living with the disease.
As co-chairs of the bipartisan Task Force, Rep. Smith and Rep. Peterson lead annual appropriations requests in support of Lyme disease research through the Department of Health and Human Services and for research funding at the Department of Defense. In 2015, the caucus secured for the first time ever, $5 million in funding in the House Appropriations Committee annual military spending legislation, which was adopted in the Fiscal Year 2016 funding bill which was signed into law, and will provide resources for Lyme disease research through DOD’s innovative, high-risk, high-reward program.
Recently, the caucus secured another major win for Lyme disease. In December of 2016, the United States House of Representatives passed, and former-President Obama signed, the 21st Century Cures Act. The Cures Act included language – similar to a bill that Rep. Smith introduced previously – which created the Interagency Lyme and Tick-Borne Disease Working Group. Specifically, Working Group comprised of federal and non-federal members tasked with reporting to Congress on scientific advances, research questions, surveillance activities and emerging strains in species of pathogenic organisms.

Lyme Advocate, Bruce Fries and other advocates in the Washington, DC area, distributed awareness material to all members of the U.S. Senate and House of Representatives, including a copy of Dr. Richard Horowitz’s book, How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease, along with personal letter from Dr. Horowitz, and information about the Congressional Lyme Disease Caucus.

Attached is a copy of Dr. Horowitz’s letter & Caucus info:

Horowitz+Congressional+Letterv4++May-2017 (3)

Lyme_Caucus

Sample letter to WI US Representative:

Sample Letter to WI US House Rep

 

Together we can make a difference

 

 

 

 

Night at the Blood Sucking Creature Museum

http://www.kitv.com/story/36375179/a-museum-of-blood-sucking-nightmares-the-us-national-tick-collection

A museum of blood-sucking nightmares: the US National Tick Collection

Posted: Sep 15, 2017 9:18 AM CDT

Susan Scutti, CNN –

 

To get to the US National Tick Collection, visitors to the campus of Georgia Southern University must descend into the bowels of the Math/Physics Building, where sunlight is absent and locked doors with unpronounceable signs prohibit entry.

Curator Dr. Lorenza Beati, a smiling woman in wire-rimmed glasses and blue jeans, a woman who radiates the same vibe as a kindly, eccentric aunt, welcomes anyone who has daring enough spirit.

Inside the collection, an elaborate camera for shooting closeups of ticks has made its home in a cramped room. It has a strobe-light effect to capture precise images of individual ticks splayed on white backgrounds, and as she operates the camera, Beati’s palce face appears in shadow and light.

She leads the way to a large abandoned-looking space where retro scientific fume hoods, glass beakers and microscopes reside. A narrow hallway is made even more congested by filing cabinets lining both walls. In turn, they are crammed with dusty files and yellowed correspondence from another century.

The main room of the collection is a brightly lit, cheerful place with coloring books and temporary tick tattoos available for the youngest visitors, and immaculate white-metal cabinets holding countless drawers.

Open the drawers to find bottles upon bottles of tick specimens, an endless variety of small, dark forms permanently suspended within clear liquid — a science-fantasy version of prison or hell, depending on a visitor’s horror movie associations.

A trip through tick world

The national tick collection is part of the Smithsonian Institution and is the world’s largest, by every account. Housed at Georgia Southern University in Statesboro since 1990, the collection contains over a million specimens representing 96% of the world’s 900 recognized tick species, including all those found in the United States.

“We keep our ticks preserved in 90% ethanol,” Beati says, emphasizing the word “we.” When kept in ethanol, specimens can last hundreds of years, she says. Dry ticks pinned like butterflies have been known to last 200 years; these should keep even longer.

The collection’s birthplace was Rocky Mountain Laboratories in Hamilton, Montana, in 1905. Some of the specimens are historical artifacts — ticks found on presidents’ dogs or on animals shot by Teddy Roosevelt — but it doesn’t take a fancy pedigree to wow Beati.

“To me, the most basic dog tick can be interesting,” says Beati, also an associate professor of biology at Georgia Southern. All ticks are blood-feeders — that’s their only food, she explains. Some will feed on any of the many terrestrial vertebrates, a category that includes birds, reptiles, mammals and amphibians. Yet other ticks are finicky eaters, such as the rat snake tick, which feeds only on the blood of that particular serpent.

To most of us, ticks may appear to be just another bug, but this is not the case. Unlike insects with segmented bodies that include distinct heads, thoraxes and abdomens, ticks are more like “a unique bag containing all their organs,” Beati says. “Ticks are not insects; they are arachnids.”

With eight legs, they are closely related to spiders and scorpions. Ticks are also mites, a diverse subclass of arachnids. “Ticks are probably the group of mites best known because they transmit diseases,” Beati says.

In fact, the core of the collection was formed in 1905 when scientists discovered that ticks could transmit illness, she explains.

First reaction of visitors

The ancient Egyptians used large ticks with bright, colorful spots on their backs as inspiration for jewelry, Beati says. African ticks feed on large animals and so become the most decorated and most colorful — in some cases, a pure gold hue — among their species, she explains.

Children from the Statesboro area who make the trek to the collection, shepherded by their teachers, often love the colorful ticks, Beati says. They also like the big ticks, those reaching a size of three-quarters of an inch or more.

” ‘Can ticks explode?’ That’s one of the questions they have, because they see them so big,” Beati says. “No. Ticks cannot explode. They know when to stop.

“Ticks are never a favorite of anyone. Usually the first reaction — it’s always, ‘Bew, what are these things?!’ But when we show them how diverse ticks are, how important they are for public health, they become more interested,” she says.

She herself took to ticks only after learning more about them.

“I’m an M.D., and I started studying parasitology in Switzerland, and the specialty of the laboratory where I was studying parasitology was vectors — so all the attributes that transmit diseases to humans or domestic animals, and in particular, ticks,” Beati, a Swiss native, says. “They were discovering at that time Lyme disease in Europe. So it was a really hot topic.”

From the Institute of Zoology in Neuchâtel, Switzerland, Beati’s interest in ticks led her to the World Health Organization’s Collaborative Center for Rickettsial Diseases and Arthropod-borne Bacterial Diseases in Marseilles, France, and then the US Centers for Disease Control and Prevention in Atlanta. She was working at Yale University in New Haven, Connecticut, when the opportunity to curate the tick collection arose.

Beati — whose name means “blessed”In Italian — jumped at the chance. After all, the collection is an active resource that researchers from all corners of the Earth make the trek to see.

“They compare their specimens to ours to decide whether or not they are dealing with already described species or new ones,” Beati explains.

Previously unknown ticks, then, are sometimes identified at the collection by way of these comparisons. Along with taxonomy, scientists and students work on gaining a better understanding of tick biology and tick-borne diseases.

Ticks cause “many, many diseases,” Beati says. “Lyme disease is probably the most popular in the US.” Ixodes scapularis, the deer tick, transmits Lyme.

Another “very important disease” in America is Rocky Mountain spotted fever, which is transmitted by Dermacentor variabilis, or the dog tick. This disease has spread farther than its name would suggest, Beati notes: “There were some really deadly cases of Rocky Mountain spotted fever in the Native American reservations in Arizona and New Mexico.”

“Probably the most dangerous disease transmitted by ticks is Crimean-Congo hemorrhagic fever,” she says, explaining that Hyalomma ticks found in desert areas of Africa and the Middle East transmit it.

Once one person is infected, a tick is no longer required for this illness to be passed from person to person. “You bleed, and it can be deadly,” Beati says, shaking her head sadly. “It’s a bad disease.”

Global citizens

There are different opinions about when ticks first appeared on the planet, with hypotheses ranging from 200 million to 400 million years ago, Beati says. Yet all scientists agree on one thing: Ticks have evolved to adapt to an enormous number of habitats on all continents.

“So you can find them in Antarctica, and you can find them deep in the Sahara desert,” Beati says, adding that their blood habit has led to some unique characteristics.

For example, one family of ticks “can survive without feeding for decades,” she says. “They just go dormant, and their metabolism is very slowed down, but you open the box, you blow on the box, and they start moving around, and they are fine.”

Some of these ticks have been kept alive in the laboratory for over 12 years without any food: blood.

“If you think about ticks, they are parasites, but unlike a mosquito, a tick has to feed for a long time,” Beati said. “It’s not one second and it’s gone.” Instead, a tick has to fight the host’s immune system, and so it has developed a diverse array of molecules, she explains.

“They inject anesthetics so that you don’t feel anything,” Beati says. “They inject anticoagulants so that the blood will keep flowing where they are biting and it doesn’t clog. They inject antihistamines so that you don’t feel the itch when they bite, and they also inject molecules that really fight your immune system, so you are immune-suppressed where they bite you.”

Scientists have begun work synthesizing similar molecules in their labs to use as human medicines, she says. Recent molecular work focuses on the genetic material found in ticks. In fact, tick DNA is a gold mine of information.

“DNA extracted from a tick will contain both the DNA of the tick plus the DNA of the pathogens in the tick, or the DNA of the blood of the animal that was the last host of the tick,” Beati says. “You can basically have the list of every single bacterium that goes on in a tick. In one tick, you can find hundreds and hundreds of bacteria.”

With the field of tick-related science moving very fast, “we will discover lots of new microorganisms,” she says. The newest molecular tools and techniques help scientists predict the possibility of disease. “New diseases transmitted by ticks — people call them emerging diseases — have been popping up on a regular basis,” she says.

Whether you’re a scientist or a citizen, safety remains key when you encounter — or are bitten by — a tick.

Through her eyes

Depending on the species — and how well-fed they are — female ticks “can lay thousands of eggs. Two thousand. Three thousand,” Beati says. This is why people who wade into long grass and disturb a batch of larvae may find hundreds of ticks clinging to them.

“One of the important things we tell people when they want to remove ticks is, don’t break the tick,” Beati says. She explains that if you do so, any bacteria in the tick could end up on your skin. If you have an open wound, whether from the tick bite or not, the tick juice might infect you. “So always, when you remove ticks, make sure you disinfect well your hands and your fingers.”

For a tick to grab hold of you, you have to touch them, and then they will climb on you and decide whether you are an animal they like, Beati explains. If so, they will find a place on your body where they feel comfortable enough to feed.

This is usually a “darker place where they can hide,” Beati says. “So if you find a tick crawling on you, you have a bit of time before they actually start biting you.” Even after an infected tick bites, hours may pass — up to 24 after the initial bite — before you become susceptible to disease.

*Please see my comment at end of article*

Beati herself is no stranger to their bite. It happens all the time, she says: “I actually love that. It helps me collect.” That said, not every tick she discovers in this way finds its way to a home in one of her specimen jars.

Disease may be frightening, but fear is not uppermost in Beati’s mind when she sees a tick.

“If you look at any tick under the microscope, you will find something beautiful about them,” this renowned scientist says. “They look like beautiful wood.”

0riginal story: http://www.cnn.com/videos/health/2017/08/31/tick-lady-orig.cnn

**Comment**
As to transmission time to infection:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/ (Excellent video by microbiologist Holly Ahern)
Only 1 mouse study has been done that showed by 24 hours every tick had transmitted infection; however, animals studies have proven it can occur in under 16 hours and frequently in under 24.  NO HUMAN STUDIES HAVE EVER BEEN DONE, and no studies have determined minimum time required for transmission.  There is also the issue of partially fed ticks which can transmit more quickly as spirochetes are already in their salivary glands.  Also, Anaplasma and other tick borne infections can be spread in minutes.
One other point:  No ticks can’t fly, but they can blow in the wind.  They state they can’t drop from trees, but let’s use our gray matter for a moment.  If a tick comes off a bird or rodent in a tree, who is to say it can’t fall or drop and infect a person beneath.  Many patients insist they became infected this way.  https://madisonarealymesupportgroup.com/2017/07/13/tv-anchor-speaks-out-about-lyme-disease/ (one such story here but I’ve heard of many, many more)

TBI’s in Australia

https://www.mja.com.au/journal/2017/206/7/tick-borne-infectious-diseases-australia

Tick-borne infectious diseases in Australia

Stephen R Graves and John Stenos
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.

For more:  https://madisonarealymesupportgroup.com/2016/11/03/ld-not-in-australia-here-we-go-again/

https://madisonarealymesupportgroup.com/2017/07/25/brave-new-worlds-the-expanding-universe-of-lyme-disease/

https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/

https://madisonarealymesupportgroup.com/2017/08/05/cdc-maps-for-lyme-disease-not-accurate/

https://madisonarealymesupportgroup.com/2017/08/24/canine-maps-better-than-the-cdcs-in-predicting-lyme-disease/

https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/

https://madisonarealymesupportgroup.com/2017/03/02/hold-the-press-arkansas-has-lyme/

The Future of Lyme Disease – Final Contagion Live Segment

 Contagion Live  Sept. 7, 2017  Approx. 10:30

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.

The entire Contagion Live Series:
3rd Segment:  
7th Segment:  
8th Segment: