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Living with Lyme: Patients seek answers amid conflict in medical communtiy

by on July 03, 2017 10:13 AM

Jim Beauchamp says he was contemplating suicide before he finally found out he had Lyme disease. The once avid outdoorsman says he spent years with debilitating symptoms, battling back pain, jaw pain, stroke-like symptoms and tremors. He lived through panic attacks and uncontrollable anxiety. No doctor could tell him what was wrong.

Eventually he could barely walk, and he had had enough. But his wife made him promise to fight through it and keep searching for answers. He was eventually linked up with a doctor who had Lyme disease himself, and he put Beauchamp, who lives in Blair County, on a regimen of antibiotics, vitamins, and had him change his diet.

Beauchamp’s struggle is reflected in many sufferers of Lyme. There are those who are bitten by a tick, see a bullseye rash, get a short-term round of antibiotics, and are mostly fine afterward. These are the lucky ones.

The insidiousness of undiagnosed Lyme disease is that it not only can afflict hosts with physical pain and rob them of their cognitive abilities, it can put them under a mental strain with feelings of depression, frustration, and hopelessness.

It was a similar situation for Russ Rossman Jr., of State College. He thinks he picked up Lyme from a tick bite while he was active with the Boy Scouts in the early- to mid-2000s. By 2006, he says he started to “really feel it,” and was plagued with chronic fatigue and a mental fog that wouldn’t lift.

Rossman had a high-level job within Penn State’s administration, one that demanded the use of a sharp and energetic mind. So Rossman blew through his sick days while he battled his symptoms and searched for answers. After about a year, he says he had to leave his job because of his condition.

It felt defeating and depressing, he says, not knowing what was causing him pain each day, and he would “sit like a blob” inside his house.

“It’s a synergistic effect in that once you’re feeling all of those issues at the same time there’s a lot of people that get severely depressed because of it,” Rossman says.

After seeing 23 different doctors, he eventually received a diagnosis of Lyme disease, long after being told he didn’t have the bacterial infection. He expressed a sense of relief echoed by other long-term Lyme sufferers that once they have the diagnosis they finally have something to fight instead of fumbling around in the dark while their quality of life diminishes.

“Now you know you have something to treat,” Rossman says. “If you know the cause you feel a little more at ease. It’s the unknown, when you don’t have answers, that it gets frustrating.”

The unknown caused several Lyme sufferers in Central Pennsylvania to form the Altoona Area Lyme Support Group in August 2016. Their first meeting drew more than 100 people. It’s one of 13 such groups in the state recognized by the PA Lyme Resource Network and the closest to Centre County.

Beauchamp and four other members interviewed together say that they don’t want others to go through what they did in their battle with Lyme.

“We knew it was a huge problem, Lyme disease, and other tick-borne diseases in this area. So we just wanted to educate and help others who are suffering,” says Amber Altiero, one of the group’s founders.

“A lot of people when they are first getting to know about Lyme disease are very confused, maybe scared,” Bill Thompson says. “I know I was. So it’s good to have some other people that you can learn from and be supported by.”

The US Centers for Disease Control and Prevention’s map of confirmed Lyme cases shows the march west across the nation, with Centre County and other counties in Central Pennsylvania engulfed in what has become a growing health care concern.

Pennsylvania’s 7,351 confirmed cases from 2015 — the most of any state in the US — were preceded by 6,470 in 2014 and 4,981 in 2013. However, the number of cases does appear to ebb and flow, with 4,950 in 2009 to 3,298 in 2010, according to the CDC. Increases in reporting also do not always mean increases in the true number of cases.

There were 28,453 confirmed cases of Lyme in the US  in 2015, the latest year for available data, with another 9,616 probable cases. That’s up from 23,305 cases in 2005.

As with many diseases, especially one that can symptomatically parade as something else, it’s tough to get a bead on the number of cases in the nation. State departments of health and regional health care providers are responsible for reporting their data to the CDC, which in turn compiles it into publicly-available lists of confirmed cases. But the CDC admits this is well shy of the true number, and that as many as 300,000 people could be infected each year. Only a fraction of those are confirmed.

There is a conflict within the medical community on the particulars of Lyme disease, which most humans contract from blacklegged ticks.

Many diagnosed with Lyme report debilitating symptoms long after they have been treated, leading to the belief of some patients and doctors in “chronic Lyme disease,” or an ongoing infection from the Borrelia bacteria.

To treat these ongoing symptoms, especially in patients that went undiagnosed for years, some doctors have their patients on long-term antibiotic treatment, a risky endeavor for even the healthiest person. It’s also expensive, as health care coverage doesn’t have to pony up for the cost.

Dr. Kit Heron practices family medicine with Penn State Medical Group in State College. He formerly worked in Philadelphia, where he volunteered with the CDC’s education outreach program and trained in tick-borne illnesses.

“Lyme is a very recent disease,” Heron says. “Lyme is not pneumonia. Lyme is not diverticulitis. This is a thing that was really only discovered in the 1970s.”

Partly for that reason, most doctors take the recommendations of the most verified research, he says.

“In light of the chronic Lyme, or post-Lyme infection syndrome, there’s not a lot of really robust studies on chronic Lyme because the disease just doesn’t do that. It doesn’t behave in such a way that makes that easy to look into.”

Some medical practitioners argue in published papers and studies that there is no clinical evidence for chronic Lyme, and relegate the assertion to pseudo-medicine.

The consensus for the mainstream standard of care is summed up by Philip J. Baker, who published a paper titled “Chronic Lyme and disease: in defense of the scientific enterprise.” “Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit,” Baker wrote.

That’s the current stance of the Infectious Diseases Society of America, which advocates only for short-term antibiotic treatment. However, in its official statements paper from 2012, the IDSA acknowledges that patients can continue to suffer symptoms even after antibiotic therapy is believed to have killed the Lyme bacterium.

The CDC refers to ongoing symptoms not as chronic Lyme disease, but post-treatment Lyme disease syndrome.

“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,” according to the CDC. “Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications.”

That said, the CDC’s position is such that it doesn’t definitively know why some people continue to suffer from fatigue, mental fog, joint and muscle pain, and other symptoms for months or years after diagnosis and treatment.

Organizations like Holtorf Medical Group, with offices in Pennsylvania, say patients come to them with chronic symptoms after initial antibiotic treatment, and that current testing is designed for acute Lyme disease and fails to detect chronic Lyme.

The International Lyme and Associated Diseases Society also contends patients suffer from chronic Lyme, and points to frequent misdiagnoses in the early stages of Lyme as one of the culprits.

“Lyme disease is often referred to as the ‘great imitator’ because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment,” much like syphilis in the 19th century, ILADS says on its website.

In its treatment guidelines, ILADS advocates that medical providers discuss “antibiotic retreatment with all patients who have persistent manifestations of Lyme disease” after other options have been exhausted and the possible presence of other tick-borne illnesses has been investigated.

Heron says the issues surrounding Lyme, and the ongoing symptoms, come down to a matter of balance when considering long-term antibiotic treatment. Because the science isn’t there yet, he says the CDC, IDSA, and doctors who get their direction from those organizations, can’t responsibly prescribe long-term antibiotic treatment, which can be harmful after even just a few weeks.

“Everybody wants to take good care of patients,” Heron says. “It’s a question of where you are looking for that particular piece of knowledge that gets you that thing. Most primary care physicians go with the Infectious Diseases Society of America and the CDC because the research is verified very well. It’s conservative in that the drive is to treat the disease without harming the patient and the research that we have on the disease, that we know about, is a little bit more likely to maintain that balance better.”

As of now, the ILADS research hasn’t been fixed in the traditional tracks of medicine. The IDSA and the CDC approach is a clinical standard for a good reason, he says: it works for most people.

The future may hold more answers for those suffering from Lyme. Medicine and science are always evolving through research that works its way through review and verification.

Heron says a lot of the lingering issues could be because Lyme damages tissue that is not built to be repaired, like the brain.

Some of those who suffered for years because of Lyme have been willing to engage in what are considered by mainstream medicine to be more experimental treatments when initial rounds of antibiotics don’t seem to work.

Donna Ake, of Lewistown, says she lost her job because of Lyme disease, and missed countless family moments, like her son’s basketball games, because of her fatigue and other symptoms.

Ake doesn’t know when she was bitten. In 2012, her symptoms began with excruciating hip pain. She was a healthy person with a good diet. She was circuit-training multiple times per week.

By 2013 she was suffering from debilitating fatigue, among other health problems. After an enjoyable Christmas party at her husband’s workplace, Ake couldn’t get up the following morning. She says her legs just refused to move.

No doctor could give her the answers, she says. They told her she didn’t have Lyme.

One day while at the hospital, Ake was having a heart echo. The nurse kept asking if she was feeling OK. Ake said she was. They told her she was in heart failure. She subsequently spent four days at Geisinger Medical Center in Danville.

So Ake sought out a doctor who specializes in Lyme. After a four-hour appointment with him and another battery of tests, he diagnosed her with Lyme disease and babesiosis, another disease transmitted by ticks.

After a detox treatment, her doctor put her on a mild, pulsing three-month regimen of antibiotics, and sent her to other doctors including a cardiologist for the damage done to her body.

Researchers point to a booming mouse population as one of the causes for an increase in the presence of Lyme among ticks. Some animals will groom away ticks, but mice and other small rodents tolerate them and are great hosts.

Rick Ostfeld and Felicia Keesing have been researching Lyme disease for more than 20 years. In March, they told NPR they are worried 2017 will be a particularly risky year for Lyme, based on an increasing mouse population observed in 2016.

Lyme is the most reported vector-borne illness in the US, referring to illness spread by infected insects like flies, mosquitoes, and ticks. Though the sixth-most common in the CDC’s list of nationally notifiable diseases, it’s heavily concentrated in the northeastern US and northern Midwest.

CDC reporting data show the biggest months for onset of Lyme disease are June and July.

Ake says her symptoms are much better now, but she still suffers from heart palpitations, panic attacks, and intermittent brain fog.

“All you can do is push on and try to take the best care of your body,” she says, adding that she won’t go into the woods anymore and is “beyond paranoid” about getting bitten by a tick. She says she impresses safety on her children.

Beauchamp has been hunting again since he got Lyme, but his friends handle the deer since they know he won’t touch the animal. He says he doesn’t remember seeing ticks until about the last decade, but one of the last deer he shot had ticks covering its ears.

After an extended stint on antibiotics and intense scrutiny of how he expends his energy each day, Rossman says he began to feel better and the symptoms receded. But just this year, he began to feel fatigued again and his doctor in King of Prussia said he again has some of the antibodies associated with Lyme. Though he hasn’t been in the woods lately, he says it is possible he picked up Lyme again from a tick in his yard. But he says he hasn’t ruled out that the bacteria went dormant in his body and is re-emerging.

At 64 years old, Rossman is now living off of retirement disability. He used to avoid the woods after he got sick, but says he wouldn’t hesitate to go camping. However, when he does go for a trek, he’s sure to spray his clothes with bug repellant and take precautions not to touch brush or high grass.

“It’s just a matter of awareness,” he says. “You can’t really hide in your house forever.”

Sean Yoder is a staff writer for Town&Gown and the Centre County Gazette. 

 

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