Visiting physician sheds new light on Lyme disease

Article Source: http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/

 

This past Friday, Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown (SRH) traveled to one of the nation’s front lines in the public health battle against Lyme disease to speak to a group of Martha’s Vineyard Hospital physicians. “I wanted to do this presentation by Skype because of all the ticks you have here,” she joked.

Dr. Zubcevik was at Martha’s Vineyard Hospital (MVH) to speak at grand rounds, a weekly meeting of clinicians, which on this day was open to the public, resulting in an overflow crowd at the Community Room just off the hospital lobby.

Over the course of the hour, she shared the most recent findings that she and her colleagues have made on the diagnosis and treatment of Lyme disease, in particular on the 10 to 15 percent of patients who suffer long-term symptoms, defined by Centers for Disease Control (CDC) as post-treatment Lyme disease syndrome (PTLDS). She discussed the protean nature of tick-borne diseases, the importance of public awareness, and the urgent need for the medical community to step up its game.

“Graduating medical students and doctors really aren’t educated about the gravity of this epidemic,” she said. “There’s a gap there that needs to be filled. We’re all responsible to educate our young doctors about what this entails.”

Dr. Zubcevic said the recent revelation that actor, singer, and songwriter Kris Kristofferson was cured of dementia once he was properly diagnosed with Lyme disease should be a lesson for medical professionals on how pervasive the disease is, and how often it is overlooked.

“Sudden-onset dementia should really be a red flag for Lyme [disease], especially in people with compromised immune systems,” she said.

“Everyone over 50 has a compromised immune system.”

Dr. Zubcevik said that doctors and parents should know that Lyme presents differently in children than it does in adults. “71 percent of the time, headache is the most common symptom in children,” she said. “Mood disturbance, fatigue, and irritability are also frequent symptoms in children. If they are acting out in school all of a sudden, get them tested.”

Dr. Zubcevik cited a particularly compelling example of undiagnosed Lyme disease where a 29-year-old male had been institutionalized four times for schizophrenia. After a series of tests, and in concert with a psychiatrist, Dr. Zubcevik began a course of daily antibiotics on him. “The first month he could remember what he had for breakfast,” she said. “The second month he could read a chapter of a book, and after six months he was back to normal. He could tolerate light and sound again, which he couldn’t before.”

Tick truths challenged

Dr. Zubcevik said recent research debunks several commonly held beliefs about the transmission and treatment of tick-borne diseases.

“The conception that the tick has to be attached for 48 hours to inject the bacteria is completely outdated,” she said. “There are studies that show that an attachment of 15 minutes can give you anaplasmosis,10 minutes for the Powassan virus, and for the different strains of Borrelia burgdorferi, we have no idea.”

Dr. Zubcevic said the notion that children, infants, or pregnant women should not be given doxycycline is also outdated. “Dermatologists have prescribed doxycycline to kids for years to treat acne; why not for such a debilitating disease?”

She also said the two-day course of doxycycline, often prescribed for people who find a tick embedded on their body, has little or no prophylactic value. “It should be 100 to 200 milligrams of doxycycline twice a day for 20 days, regardless of the time of engorgement,” she said. “It is not a two-day thing.”

The blood tests currently used to detect the presence of the Borrelia burgdorferi bacterium are the enzyme-linked immunosorbent assay (ELISA) and the Western blot test.

Dr. Zubcevik said research has shown there are 10 different strains of Lyme disease in the United States, and many of them do not test positive on the traditional Western blot or ELISA tests. In a previous email to The Times, she wrote that with current testing, 69 out of 100 patients who have Lyme disease may go untreated.

“The bull’s-eye rash only happens 20 percent of the time,” she said. “It can often look like a spider bite or a bruise. If you get a bull’s-eye it’s like winning the lottery. Borrelia miyamotoi, which we have a lot in Massachusetts, will not test positive on either test. That’s a huge problem, so the CDC is moving toward a different kind of test.”

Borrelia miyamotoi also has the potential to spread rapidly, since it’s transmitted directly from mother to offspring. Nymphal deer ticks need to feed on a mammal, most likely the white-footed mouse, to contract the virulent Borrelia burgdorferi bacterium.

In addition to Lyme disease, Islanders are also vulnerable to coinfections such as babesiosis, anaplasmosis, ehrlichiosis, and tularemia, which can also go undetected. “Babesiosis is a malaria-like disease that can persist for months or even years,” she said. “Patients who can’t catch their breath are a red flag for babesiosis.”

Double whammy

Dr. Zubcevik described deer tick nymphs as “the perfect vector” because of their diminutive size — the size of the “D” on a dime — and because of the analgesic in their saliva that often makes their bite almost undetectable.

The bacteria they inject are equally crafty.

“Borrelia burgdorferi is an amazing organism; I have a lot of respect for it,” she said. “It is a spirochete, meaning it can corkscrew into tissue as well as travel in the bloodstream. It can do whatever it wants. It’s twice the speed of a [white blood cell], which is our fastest cell. It’s so strong it can swim against the flow of the bloodstream.”

Dr. Zubcevik said there are videos that show a white blood cell pursuing a spirochete, which evades capture by drilling into tissue.

“It’s really easy to see why this adaptive bug can avoid the immune system,” she said.

Dr. Zubcevik said doxycycline stops the bacteria from replicating, but it doesn’t kill them. The rest is up to the body’s immune system, which is the reason some people suffer for so long.

“There’s a lot of neurotoxicity, which is why people feel so bad all over. It’s like a toxic warfare going on inside the patient’s body.”

Controversy continues

Last week, Governor Charlie Baker rejected the legislature’s controversial budget amendment that would have required insurance companies to cover the cost of long-term antibiotic treatment which chronic Lyme Disease (CLD) advocates maintain is the most effective treatment for their symptoms. The Massachusetts Infectious Disease Society, representing more than 500 infectious disease specialists, does not recognize CLD, and urged the governor to reject the amendment, asserting that long-term intravenous antibiotic therapy can be dangerous and possibly lead to “superbugs” that are immune to current treatments.

The CDC also does not recognize CLD or the use of long-term antibiotics for PTLDS. “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo,” the CDC website states. “Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications.”

However, the website also says, “Recent animal studies have given rise to questions that require further research.”

Dr. Zubcevik diagnoses the condition with a different name — “persistent symptoms related to Lyme disease.”

“I’m new to this field,” she said. “For me there’s no controversy. We have to innovate, we have to find solutions. [SRH] has connected with top scientists from all around the country. Studies show that after treatment in mice, dogs, and monkeys, Borrelia burgdorferi bacteria are still there. This has also been shown in human tests.”

Citing the work of Dr. Ying Zhang at Johns Hopkins Lyme Center, she said the most likely effective remedy will be a combination of several antibiotics. In a previous interview with The Times, Dr. Zhang said he has worked on an effective PTLDS treatment for six years, and that current Lyme disease treatments may not clear bacterial debris, or “persisters,” which may be one of the possible causes of PTLDS. Dr. Zhang said that his work on tuberculosis (TB) is his primary focus; however, advances in fighting TB, e.g. using new combinations of drugs already approved by the Food and Drug Administration (FDA), have yielded promising results in the fight against “persisters.”

“There’s also a need to develop a more sensitive test,” he said.

Patient advocate

Although she started out at Spaulding Rehabilitation Hospital focusing on the neuropathy of concussions, Dr. Zubcevik branched out into treating people with Lyme disease in part because both maladies can cause similar cognitive impairment. “I heard Lyme disease patients say they can’t remember what they had for breakfast, or they get lost driving home,” she said. “It sounded the same as concussion symptoms, so we started doing PET scans.”

Positron emission tomography, or PET scan, is an imaging test that uses a radioactive substance that shows brain functioning. Dr. Zubcevik said PET scan of a patient with persistent Lyme disease symptoms showed a brain colored in blue and purple hues, where a healthy brain presented with shades of yellow and green. She showed an image of the patient’s brain after six months of intravenous antibiotics, which was dominated by shades of yellow and green.

Dr. Zubcevik told the hospital gathering that many patients she sees have been suffering the physical, mental, and emotional effects of the disease for so long, they have lost the will to live. “I literally have patients who were just done,” she said. “They couldn’t go on. The first thing I do is validate their experience, and tell them, ‘I believe you.’ Sometimes they start crying because somebody finally listened. Some patients show symptoms of post-traumatic stress disorder because they’ve been ignored for so long. Marriages dissolve all the time because one spouse thinks the other is being lazy. Many chronically ill patients end up alone.”

Treatment at SRH borrows from many different disciplines. In addition to medication, it can include nutrition counseling, physical therapy, occupational therapy, speech language therapy, mental health counseling, and referrals to infectious disease and other specialists as necessary.

Dr. Zubcevik said that the program was initially funded by a donation from a patient who was treated shortly after the clinic opened. “We’re always looking for more funding,” she said.

The current wait list at Spaulding is about four months.

Prevention, prevention, prevention

“Once patients are doing better, I will call harass them on the weekend to check if they are taking the proper precautions,” Dr. Zubcevik said. “Are they using repellant? Are they doing daily checks? Are they treating their dogs? I don’t want to do another PICC line [intravenous drug access] or PET scan.”

Dr. Zubcevik also said many people need to know proper tick removal — using tweezers to grab the head of the tick, not at the body.

“Don’t don’t squeeze the belly of the tick, it will inject the bacteria into your bloodstream. Do not use oils; it can make the tick vomit the bacteria into the bloodstream. If the tick is deeply embedded, go to the doctor.”

More information on SRH can be found at www.spauldingrehab.org/deancenter

More information on tick-borne disease prevention can be found on the Martha’s Vineyard Boards of Health Tick-Borne Disease webpage.

Numerous videos on Lyme disease prevention, including Dr. Zubcevik’s presentation, are available on the MVTV website.

If you have been diagnosed with Lyme disease you might be eligible to donate plasma or a blood specimen and earn up to $600 or more. Visit www.plasmamedpatients.com for more info or call/text 561-962-5093.

Beyond Lyme: New Tick-Borne Diseases On The Rise In U.S.

It all started in the shower. Tucker Lane looked down, and there they were.

“Two ticks, on my right hip, directly next to each other,” he says.

At the time, Lane didn’t think much about it. He grew up on Cape Cod. Ticks are everywhere there in the summer. “Just another tick bite. Not a big deal,” he thought.

That was June. In September, everything changed.

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The world is in a new age of infectious diseases.

Over the past 60 years, the number of new diseases cropping up per decade has almost quadrupled. The number of disease outbreaks each year has more than tripled since 1980.

The U.S. is no exception.

The country is a hot spot for tick-borne diseases. In the past 50 years, scientists have detected at least a dozen new diseases transmitted by ticks.

“The more we look, in a sense, the more we find,” says Felicia Keesing, an ecologist at Bard College in upstate New York. “Around here, there’s anaplasmosis, babesiosis and a bacterium related to Lyme, which causes similar symptoms.”

And that’s just in the Northeast.

In the Midwest, you can find Heartland virus, a new Lyme-like disease and Bourbon virus — which is thought to be spread by ticks but hasn’t been proven yet. In the South, there’s Southern tick-associated rash illness. Out west, there’s a new type of spotted fever. And across a big swath of the country, there’s a disease called ehrlichiosis.

Most of these diseases are still rare. But one is especially worrying. “It’s a scary one,” Keesing says.

“Our local tick — this blacklegged tick — occasionally carries a deadly virus that’s called Powassan virus,” says Rick Ostfeld, a disease ecologist at the Cary Institute of Ecosystem Studies in Millbrook, N.Y.

Powassan is named after a town in Ontario, Canada, where the virus was discovered in 1958. Now it’s here in the U.S. The country records about seven cases each year on the East Coast and in the Upper Midwest.

What makes Powassan so dangerous is that it attacks the brain, making it swell up. In about 10 percent of cases, Powassan is deadly. And if you do recover, you have about a 50 percent chance of permanent neurological damage.

He was gone, just gone

Although doctors didn’t realize it at the time, it was Powassan flooding Lane’s brain.

Just a few days after he came down with his terrible headache, he was on life support in the ICU. His mother was sure she had lost him.

“If you opened his eyelids, he was just gone,” she says. “I have never been so devastated in my whole life.”

Doctors told her there really wasn’t anything else they could do for her son. But she never lost hope. “I did a lot of praying. I’ll tell you that much,” she says.

Then one morning, Cash went to visit Lane. He had been in a coma for a week. When she opened the door, she recalls, “he turned his head and looked at me.”

Then he tried to speak. “The only thing that came out was a ‘Ha,’ ” she says. “But he recognized me.”

From then on, Lane started to get better, quickly. He started to breathe on his own, to recognize people. In a couple of weeks he was out of the hospital.

As he woke up, Lane says, he was never scared or worried, because he was always surrounded by his family.

“My family and I are really close,” he says. “So when I woke up, they were all around me. My cousins were just joking with me and making me laugh and stuff like that. So it was all good.”

And it was all good. Lane’s recovery stunned doctors. “His recovery was truly remarkable,” says Lyons, his doctor.

But not everyone is as lucky as Lane.

Back in 2013, Lyn Snow of Rockland, Maine, also was bitten by a tick. She was 73, a well-known watercolor artist. Less than a week later, she was in the ICU, just like Lane.

“She subsequently went downhill, so unbelievably quickly,” says her daughter, Susan Whittington. “She became incoherent and delusional. She was talking to paintings.”

Within a few weeks, she was on a ventilator and completely unresponsive. Weeks went by. Eventually, Whittington got a diagnosis: Powassan.

That’s when we knew it was unrecoverable,” Whittington says. “That’s when we knew that we would have to let her go. And that’s what we did.”

It was all horrific,” she adds. “Just before my mom was bitten by the tick, she would walk 3 miles every day, ride horses with her grandchildren. She was an amazing grandma.”

Fighting back

There are many ways to protect yourself from tick-borne diseases. Wear long sleeves, spray on DEET and check yourself every night in the mirror — just to name a few.

But protecting whole towns, or even just a neighborhood, has been difficult.

“So far there have been no success stories of treating people’s individual properties in reducing cases of tick-borne diseases,” says Keesing.

But she and Ostfeld, her collaborator and husband, are trying to change that. They think they’ve come up with a way that may finally cut down on the cases of Lyme, Powassan and other tick-borne illnesses in the Northeast.

Their secret weapon is an unlikely critter.

“I can already feel that it’s a pretty fat mouse,” Ostfeld says, as he pulls out a white-footed mouse from a trap that’s been set up in a forest near his laboratory.

The traps are metal boxes, about the size of wine bottles, hidden underneath leaves. “Mice love to enter them,” Ostfeld says. “They love to enter dark tunnels.”

Ostfeld has been trapping and studying these little mice for more than 25 years. And he has found something critical to understanding tick-borne diseases: The mice are covered in ticks.

For some reason, ticks flock to mice. Other animals groom the bloodsuckers off and kill them. But mice don’t. They let the critters attach and feed on their face and ears.

Ostfeld says he has seen mice with 50, 60, even 100 ticks on their face and ears. “When I first noticed this, it really grabbed my attention.”

Most of these ticks are carrying Lyme disease, Ostfeld has found. Others are carrying anaplasmosis, babesiosis or Powassan. Some ticks harbor two, three or even four pathogens at once.

Theses observations gave him an idea: Use the mice to kill the ticks. Turn the mice into a little assassins, who run around the forest executing ticks.

This idea is surprisingly simple to carry out. Remember those boxes Ostfeld uses to trap mice? What if you put a tick-killing chemical inside the boxes?

A mouse walks into the box and is swiped with a little brush that applies a drop of the insecticide on its back.

“The chemical is the same that people put on their dogs and cats,” Ostfeld says. “But it’s an even tinier drop, much tinier. So a little bit goes a long way.”

And it lasts a long time. For weeks after the mouse leaves the box, it kills ticks that land on it.

But will it work in the real world?

This spring Ostfeld and Keesing have launched an experiment with 1,200 families in upstate New York to find out. Some families will get these tick boxes in their yards. Some will get a fungus sprayed on their shrubbery, which is known to kill ticks. And some will get neither.

Over the next five years, Ostfeld and Keesing will check to see whether the boxes and fungus keep people from getting tick-borne diseases.

Keesing is hopeful.

If anything is going to work to reduce the number of tick-borne disease cases in neighborhoods, this is going to be it,” she says.

Because here’s the thing about ticks: It’s not enough for just one or two families in a neighborhood to protect their yards, Keesing says. The whole community has to come together, in a concerted effort, to fight the onslaught of tick-borne diseases.

Read article here.

If you have been diagnosed with a tick-borne disease, you might be eligible to donate plasma and earn $1200 or more. Visit www.plasmamedpatients.com for more info or call/text 561-962-5065.

Did You Get Bit By A Lyme-Infested Tick? Here’s What To Do

What you don’t want to do is squeeze the body of the tick,” he says. “That will cause the tick to spew all of its stomach contents into the skin, and you’ll be more likely acquire whatever infection that tick was carrying.

_______________________________

By Michaeleen Doucleff

This spring and summer may be a doozy for Lyme disease, at least in parts of the Northeast.

“We’re anticipating 2017 to be a particularly risky year for Lyme,” says Rick Ostfeld, a disease ecologist at the Cary Institute of Ecosystem Studies in Millbrook, New York.

Ostfeld has been studying the debilitating tick-borne disease for more than 20 years, and has developed an early warning system based on mice. For more on that, check out the piece in our sister blog, Goats and Soda.

He’s not exactly sure which parts of the Northeast will be most affected, but if recent history repeats itself, the risk will be high in New York state and Connecticut, he says, and possibly patches of the mid-Atlantic region.

In other parts of the New England and the upper Midwest, Lyme continues to spread, says epidemiologist Kiersten Kugeler at the Centers for Disease Control and Prevention.

Lyme disease — which causes flu-like symptoms and arthritis — is spread by blacklegged ticks. They can be as small a a poppy seed. And they like to hang out in the nooks and crannies of the human body. “That’s the scalp, behind the ears, the armpits and in the groin area,” she says.

On the East Coast, most people catch Lyme right around their homes, Kugeler says, not just when they’re hiking or camping. “People may be putting themselves at risk every day without knowing it.” Here are some tick bite-avoidance tips.)

So if you live in places with Lyme, she recommends checking your body for ticks every day. Make it part of your daily routine.

And when you find a tick:

1. Don’t panic, says Dr. Brian Fallon, who directs the Lyme and Tick-Borne Diseases Research at Columbia University Medical Center.

2. Get out the tweezers. “Very carefully, go under the head of the tick with the tweezers and just pull out the mouth of the tick, which is embedded in the skin,” Fallon says.

“What you don’t want to do is squeeze the body of the tick,” he says. “That will cause the tick to spew all of its stomach contents into the skin, and you’ll be more likely acquire whatever infection that tick was carrying.”

Also, don’t put Vaseline or smoke from a cigarette or [a] match on it,” Fallon says. “Just use tweezers.”

3. Check the Lyme map. Next you want to figure out if you picked up the tick in an area where Lyme is a problem. The CDC tracks Lyme cases and has detailed statistics — at the county level — about where doctors report cases.

Another good place to check is the website of your state’s health department.

The goal is to figure out if Lyme is present in your community. If the answer is, no, then you can relax. The chance you have Lyme is very, very low.

If the answer is, yes, then you want to see how intense transmission is in your county. This information will come in handy down at No. 5.

4. Save that tick. If there’s a possibility you picked up the tick in an area where Lyme is common, Fallon says, you might want to hold onto the critter so a lab can test it for Lyme.

“Put the tick into a baggie,” he says. “The tick doesn’t even need to stay alive for a lab to see if it carried Lyme.”

You can also take a picture of the tick and send it to the TickEncounter Resource Center. Scientists there will help identify the tick and tell you the chance it could have Lyme.

5. Monitor your health. So now comes the big decision: Should you go see a doctor? That depends on two factors: your symptoms and your location.

Be on the look-out for any red rash, Fallon says. It doesn’t have to be shaped like a target or bull’s eye.

In fact, 80 percent of the time, the rash with Lyme isn’t shaped like that. It’s just red and expanding.”

“If you do develop an expanding rash, a fever or flu-like symptoms, don’t wait. Go see a doctor,” Fallon says. The earlier you start taking antibiotics the more likely you will recover fully and not have any lingering problems.

And while some symptoms persist even when people get treated, “The good news with Lyme is the majority of people who get treatment early do very well,” he says.

If you don’t have any symptoms, you don’t necessarily need to see a doctor, Fallon says. Not all blacklegged ticks have Lyme disease. And after it starts biting you, it takes about 24 to 36 hours to transmit the pathogen into your blood. So if the tick wasn’t on your body very long, you’re probably OK.

But if you live in a place with a high number of Lyme cases, you might want to check in with a doctor even if you don’t have symptoms, Fallon says, especially if you think the tick was on your body for a while.

“The Infectious Diseases Society of America recommends a one-day treatment of doxycycline, prophylactically,” Fallon says, “That’s believed to be protective, to some extent, from the disease.”

Read article here.

If you have been diagnosed with a tick-borne disease, you might be eligible to donate plasma or a blood specimen and earn $50-300 or more. Visit www.plasmamedpatients.com for more info or call/text 561-962-5065.