The stories of pain, fatigue and delays play out year after year.

Rich Bowra went four months thinking he had Lou Gehrig’s disease and better get his affairs in order. That was after a doctor told him his illness was due to stress. And before yet another, Bowra said, who told him the problem was “in my head. I wanted to be sick.”

Mike Scheffey began feeling sick in January and was finally overcome at a late summer Phillies game. “I felt like I was drunk, wobbling all over the place,” he says. He had been told for months he had a virus. Now he was told the main problem was dehydration, which also led to a small stroke.

Both men, it turned out, had Lyme disease.

Bowra got sick in 1989. Scheffey got sick in 2018.

Forty-plus years after Lyme began sickening people around a small town in Connecticut, it’s still common for people to go months with their illness undiagnosed or misdiagnosed. Some are told they have ALS, multiple sclerosis or even Alzheimer’s disease. Or that it’s all in their head.

Pennsylvania reports nearly 10,000 cases of Lyme annually, more than any other state. Yet the true number of people who get sick is probably much higher: The U.S. Centers for Disease Control and Prevention estimates reported cases reflect only about 10 percent of the actual number.

Many patients blame doctors for not knowing enough about Lyme. Or for giving them two or three weeks of antibiotics, declaring the Lyme gone, and insisting their ongoing sickness must be something different. Then, when it finally becomes clear the problem is a case of Lyme that won’t go away, insurers often refuse to pay for the treatment.

Lyme also exasperates doctors. The test for it is notoriously unreliable, measuring antibodies that often don’t appear until weeks after the infection sets in. Many people don’t get the bulls-eye rash associated with Lyme or even know they were bitten by a tick, which is how humans get Lyme. And once Lyme is diagnosed, there’s serious disagreement among doctors over how to treat it.

Beyond that, Lyme could serve as the poster child for the ills of our fragmented health care system. It affects people in many different ways and in different parts of the body, including the heart, brain and joints. People commonly get sent to a succession of specialists, and often no one connects the dots.

Worst of all, many people who come down with long-term Lyme don’t know if they’ll ever be totally rid of it.

“I tell people 80 percent is my new 100 percent,” says Scheffey, 65, who used to run and bike daily on the Appalachian and other trails in Cumberland and Perry counties — likely where he picked up a Lyme-infected tick.

If there’s any bright spot in all the suffering, it’s this: More and more people are finally realizing a bite from a poppy seed-sized deer tick, commonly found in woods, trails and backyards throughout central Pennsylvania, can drastically alter their life, possibly forever.

“Who knew that ticks were nature’s dirty needles?,” says Linda Olley of Cumberland County, a retired registered nurse who believes tick bites led to her need for multiple joint replacements.

Some don’t seem to get better

Olley is referring to the fact the deer ticks which carry Lyme commonly carry at least one other disease, often more than one. In Pennsylvania, these increasingly include babesiosis and Bartonella, a pair of parasites that attack red blood cells. They can survive the antibiotics commonly used for Lyme. People have carried one or more for months, wondering why they’re sick.

The good news is that about 80 percent of people who get Lyme fully recover after two or three weeks of antibiotics. The bad news involves those who don’t quickly get better, or whose Lyme isn’t caught early.

Dr. Timothy Stonesifer is a central Pennsylvania family doctor sought out by Lyme patients. Many come to him, still sick, after seeing multiple doctors and specialists, including psychiatrists.

Stonesifer is convinced the true number of people with severe, long-term, sometimes disabling problems related to Lyme is dramatically underreported. He further believes the government is behind in investing in research to settle long-running questions and debates concerning Lyme.

“I keep saying when is when? When is the pendulum going to start to swing?,” he says.

Medical organizations clash

“It’s the longest war in medicine,” says Julia Wagner, president of the PA Lyme Resource Network.

It’s also an ugly one, set off by this: Two organizations provide treatment guidelines for Lyme. And they bitterly disagree.

Most doctors follow the guidelines of the Infectious Diseases Society of America, or IDSA. But many of the people made sickest by Lyme, and some of the doctors who treat them, embrace those of the International Lyme and Associated Diseases Society, ILADS.

IDSA recommends only short-term antibiotics to treat Lyme. It advises against antibiotics for problems that arise after that. ILADS recommends more aggressive use of antibiotics for early-stage Lyme, and sometimes many months of antibiotics for patients who remain sick or become sick again.

The organizations also disagree over the cause of the long-term ailments — sore and swollen joints, extreme fatigue, heart problems, depression — that last months or years for some people. According to IDSA, they don’t result from lingering Lyme infection, but from the body’s response to the Lyme, such as the body’s immune system mistakenly attacking itself. That’s why IDSA doesn’t back continued antibiotics for people who remain sick.

ILADS, on the other hand, believes Lyme can survive antibiotics, and sometimes needs to be hit with multiple antibiotics for months, often intravenously.

Here’s why it’s a high-stakes war: Health insurers typically follow the more conservative IDSA recommendation against long-term antibiotics, and therefore won’t pay for them. Patients who find a doctor willing to prescribe long-term antibiotics usually have to pay for it themselves.

Here’s why it’s an ugly war: The medical establishment embraces the more conservative ISDA guidelines. Medical boards in some states have punished doctors for taking the more aggressive ILADS-backed approach.

Moreover, a group of 24 Lyme patients has filed a federal lawsuit against IDSA, eight of the nation’s biggest health insurers and six IDSA doctors. They contend that, years ago, a group of IDSA doctors conspired with health insurers to limit Lyme treatment to 28 days of antibiotics, for financial reasons rather than the health of patients.

Meanwhile, there are the untold casualties — people who just want to find out what’s wrong with them and get their lives back.

‘I was never the same’

During fourth grade, Mikayla Vallati of Camp Hill woke with swollen joints, barely able to walk. The doctor said it was mononucleosis. When Mikayla didn’t return to normal after a few weeks, her mom, a registered nurse, suspected it was something else. She took Mikayla to more doctors. Each concluded her problems were related to mono. She missed two months of school.

“After that I was never the same,” says Vallati, now 18.

She tried to live normally, participating in activities including field hockey. In ninth grade, she developed severe pain in an ankle. The doctor believed it was growth-related. When it persisted, the doctor thought something might be broken and ordered x-rays. Then the other ankle swelled up, according to her mother, Julie Vallati. Mikayla was also tested for lupus and juvenile arthritis.

By her sophomore year she felt extremely tired, sometimes sleeping 24 hours straight. At one point she was told she was anemic. She had severe headaches and her vision worsened, forcing her to get glasses.

During those years, she also experienced severe anxiety that her mother says was “crippling at times.”

She often fell asleep on the couch at her boyfriend’s home. His mother, familiar with Lyme, asked if Mikayla had ever been tested and gave information to Julie Vallati. Mikayla’s parents decided to take her to a Lyme specialist in Connecticut, a six- or seven-hour drive away.

The specialist concluded Mikayla had Lyme, as well as babesiosis and Bartonella. He put Mikayla on antibiotics. None of it was covered by insurance. Julie Vallati estimates they spent $10,000.

But Mikala didn’t get better.

Eventually she and her mother attended a Lyme disease conference in Hershey, where they met doctors who said they needn’t travel to Connecticut and recommended doctors closer to home. Five months ago, a doctor in Lancaster put Mikayla on a combination of three antibiotics. She says she feels better now, although she still has periods of fatigue and she’s highly sensitive to light, causing her to take online college courses.

“At times I felt very hopeless,” her mother says.

‘They need thoughtful care’

Dr. John Goldman is head of infectious diseases at UPMC Pinnacle. Treating patients with things like infections in their hearts or bones, he often relies on heavy-duty antibiotics.

But he doesn’t offer antibiotics to Lyme patients who become sick after an initial treatment of 14 to 21 days of antibiotics, unless a test shows Lyme or another tick-carried infection.

His reasons are simple: There’s no research to convince him ongoing Lyme infection is the cause of the lingering symptoms. Rather, the most accepted research shows persistently sick Lyme patients given long-term antibiotics did no better than those given a placebo. Moreover, long-term antibiotics have their own risks, including bloodstream infections when given intravenously, and c-diff infections, which can result from antibiotics killing off good bacteria in the digestive system.

“I think it exposes them to risk without any clear benefit,” he says.

Goldman has cared for several hundred people with what he and the IDSA call “post-treatment Lyme disease syndrome.” He doesn’t doubt they are seriously ill, saying they are just as sick as people with severe heart disease or emphysema. However, he doesn’t believe it’s an active Lyme infection, but rather “the body’s reaction to the Lyme.”

“I am in no shape or form saying they don’t need care,” he says. “I’m saying they need thoughtful care, careful care.”

His first step is to look for other possible causes and treat any he finds. If he finds none, he has several drugs and medications that can help with Lyme symptoms such as chronic pain. Since the patients often have been inactive for a long stretch, he sometimes prescribes “gentle exercise” and weight loss.

He tells patients to expect it will take from six months to two years to fully recover. He estimates about 90 percent do.

“Literate” about Lyme disease

Stonesifer, the Shippensburg-area family doctor, is among the doctors considered “Lyme literate” by long-suffering patients and advocates. He subscribes to the ILADS’ more aggressive approach to antibiotics.

When someone comes to him with an early case of Lyme, he typically prescribes four to six weeks of antibiotics — about double the amount recommended by the IDSA. “My approach is I’m going to get this now so they don’t get chronic Lyme,” he says.

Stonesifer believes Lyme can survive antibiotics, leading to the persistent sickness some people get. When he treats patients with persistent illness, he prefers to get an exact diagnosis confirming Lyme or other tick-carried disease. But that can require $2,000 worth of tests, which often aren’t covered by insurance. If the patient can’t afford it, he might diagnose them for Lyme if their history includes definite bites from ticks in an area where Lyme is prevalent.

He typically prescribes from two to 12 months of antibiotics, often in combination. In addition, he might prescribe natural remedies and physical therapy or exercise. Some patients have later flareups, requiring new rounds of antibiotics, Stonesifer says.

Stonesifer is bothered by the “watch and wait” approach many doctors use with patients who know they’ve been bitten by a tick, but have no rash or symptoms. They are given a dose of antibiotics, then left to wait to see if other symptoms arise. Stonesifer believes about half the deer ticks in Pennsylvania carry Lyme, babesiosis or Bartonella, and possibly more than one of those.

“We live in Pennsylvania. We have 100,000 cases,” he says. “Would you want to watch and wait and potentially get a disease that is life-threatening?”

Stonesifer believes research is steadily confirming his views. One recent study found a form of Lyme that survived treatment with a single antibiotic but was killed off with a three-antibiotic combination. This form of Lyme also seemed to attack the joints more fiercely, and the researchers believe it might be responsible for persistent Lyme in humans. Stonesifer looks forward to follow-up research involving humans.

“I don’t think anyone has it figured out yet,” he says. “I think the medical establishment needs to figure out where we go from here.”

Pain lingers

Mike Scheffey, 65, lives in Cumberland County and is retired from a career in food industry quality control and government relations. In the early months of his illness, he was told he had a virus. The day after becoming ill at the Phillies game, he went to a walk-in clinic, where he was told he was dehydrated and sent to the ER for fluid. He had also suffered a small stroke.

A few days later he woke with a puffy face, swollen hands and a rash. Back at the ER, his wife asked that he be tested for Lyme. The test came back positive. A spinal tap showed it had spread to his brain.

He spent eight days in the hospital and received 30 days of antibiotics through a port in his chest.

Scheffey has resumed trail running and biking, although he doesn’t feel quite the same.

“To this day my joints ache,” he says.

Road looks rougher

Rich Bowra, 69, is retired after 30 years as executive director of the Dauphin County Library System. His first major Lyme symptom was an irregular heartbeat. His doctor attributed it to stress. But Bowra got sicker, developing tingling, numbness and twitching muscles, leading a neurologist to conclude he likely had Lou Gehrig’s disease, which is fatal.

After four months it became obvious the illness, which now included fatigue, fever and foggy thinking, couldn’t be Lou Gehrig’s disease. But a succession of specialists failed to offer a convincing diagnosis.

Eventually, while sitting in a waiting room, he picked up a Reader’s Digest and saw an article about a New Jersey man suffering from a mysterious new sickness: Lyme disease. The symptoms matched his own.

This was around 1990 — before unlimited information was a few keystrokes away. Bowra considers himself fortunate that, as a library professional, he had uncommon access to information. His research led him to people in Connecticut. He learned of a doctor in Sharon, Pa., 250 miles away. The doctor put him on intravenous antibiotics, which he took three times daily for five months.

Bowra finally began feeling better. He founded an early Harrisburg-area support group for Lyme patients. For several years, he described his Lyme ordeal to medical students at Penn State College of Medicine, urging them to be careful about dismissing patients’ complaints just because they don’t fit with their training and experience.

He’s had several flareups over the years, and twice went back on intravenous antibiotics. Today, Bowra says he feels pretty good, although he still has bouts of fatigue and twitching in his calves, which his doctor attributes to nerve damage from the Lyme. He continues to take antibiotics and travels to Sharon every three months for checkups.

“I just don’t care to go off the antibiotics right now,” he says. “It’s kind of like the old adage, ‘If it ain’t broke, don’t fix it’.”

For years, Bowra was active in Lyme support and advocacy. But he eventually pulled back. He no longer wanted Lyme to be a major focus of his life. And he became discouraged by the flood of online information about Lyme, much of it conflicting, much of it unproven, and much of it probably dangerous. He worries that for people with persistent Lyme, the road to the right treatment is no easier than the one he followed in 1989.

“It’s not like I was the pioneer and they’ve since figured it out,” he says. “I’m still the pioneer, but they still haven’t figured it out.”