Wisconsin’s ‘chronic Lyme’ patients embrace alternative treatments, rack up big bills

By Zhen Wang, Wisconsin Watch

 

Crystal Pauley, a former physician assistant, didn’t believe in so-called chronic Lyme disease — until she became sick.

Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just six out of 285 primary care doctors surveyed in Connecticut — an epicenter for the tick-borne infection — believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.

When Pauley worked for the La Crosse-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. “I’m working in the medical field,” she said. “We’ve never learned about that.”

Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become “pseudo-Lyme literate” because of her own personal journey.

Pauley belongs to a cohort of patients with Lyme-like symptoms but negative test results or patients with positive test results who suffer from lingering symptoms long after treatment. They call it chronic Lyme disease, while the Centers for Disease Control and Prevention labels it as Post-Treatment Lyme Disease Syndrome (PTLDS). The CDC says there is no known treatment for the condition.

“Their symptoms are always real. They’re experiencing them,” said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms.

“If someone is having physical symptoms and isn’t feeling listened to, then they’ll have mental health repercussions and then that will impact their physical well-being,” she said. “And then it’s a spiral that if you don’t address both components of health, you’re not going to make much progress on either side. And they will continue to feel sick.”

Wisconsin Watch talked with five Wisconsin patients, all women, who have been searching for validation and experimenting with personalized treatments as part of a long and sometimes grueling battle with the illness. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin — which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.

One of the five tested positive for Lyme using a two-step testing recommended by the U.S. Centers for Disease Control and Prevention. Three others tested positive using a test not recommended by the CDC. The fifth woman was diagnosed as possibly suffering from the disease by a “Lyme-literate” practitioner.

Wide-ranging symptoms

All of the five patients share commonalities. They’ve never noticed the signature “bull’s eye” rash around the tick bite, the hallmark of Lyme disease, which is seen in 70% to 80% of patients. But relentless waves of rheumatologic, cardiac and neurological symptoms have flattened their lives. Some of them were previously fit and healthy.

Pauley, 37, who as a student cranked through medical textbooks, began having trouble remembering

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Anxious about wellness treatment bills down the line? Do this.

The scary detail about retirement is that it can be difficult to estimate your potential living fees way in progress. If you intend to hold your recent household, its residence tax monthly bill could rise by $2,000 around the future 20 years. Or, it could rise by $10,000, and which is a huge difference.

In the same way, the price of healthcare could rise as soon as you enter retirement, and that could be thanks to a range of variables. Very first, there is certainly inflation – a little something a lot of people are acquainted with these times. Inflation has been notably robust inside the realm of health care, so in time, your charges could climb even if your wellness stays solid. But together these traces, the state of your health will also dictate how substantially cash you conclude up acquiring to spend on health-related care in the future.

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If you happen to be worried about affording health care once your time in the workforce comes to an conclude, you happen to be in excellent business. In a recent Principal survey, 64% of staff cited health care expenses in retirement as a factor that’s stopping them from experience monetarily secure about the future.

The fantastic news, while, is that there are techniques you can choose to preserve for healthcare in retirement. And the quicker you commence, the significantly less of a stress your senior clinical prices could possibly be.

Save now, worry fewer later

If you happen to be a long time away from retirement, predicting your potential healthcare expenditures can be challenging. And so your greatest wager is to just preserve as aggressively as probable.

To that conclude, you have some alternatives. Initially, you could search at maxing out your IRA or 401(k) strategy, if your employer features 1. The revenue you sock absent in both account will be yours to use for any goal arrive retirement, so the increased a equilibrium you accrue, the superior.

You can also search at contributing to a wellbeing cost savings account, or HSA. Not every person is suitable for just one of these accounts, and you can expect to only be allowed to participate if you might be currently enrolled in a superior-deductible health and fitness insurance plan plan. But if you do qualify for an HSA, it pays to max out or get as shut as feasible.

TURNING 65 IN 2022? Ought to you claim Medicare and Social Security?

Not like flexible investing accounts, HSA cash never ever expire, so you can fund your account currently and have that income into retirement. In the meantime, HSAs let you to commit cash you are not working with. And like Roth IRAs and 401(k)s, any financial investment gains you delight in in your HSA will be yours to appreciate tax-no cost. HSA withdrawals are also tax-no cost, supplied they are applied to address

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After Medical Bills Broke the Bank, This Family Headed to Mexico for Care

The Fierro family of Yuma, Arizona, had a string of bad medical luck that started in December 2020.

That’s when Jesús Fierro Sr. was admitted to the hospital with a serious covid-19 infection. He spent 18 days at Yuma Regional Medical Center, where he lost 60 pounds. He came home weak and dependent on an oxygen tank.

Then, in June 2021, his wife, Claudia, fainted while waiting for a table at the local Olive Garden. She felt dizzy one minute and was in an ambulance on her way to the same medical center the next. She was told her magnesium levels were low and was sent home within 24 hours.

The family has health insurance through Jesús Sr.’s job. But it didn’t protect the Fierros from owing thousands of dollars. So, when their son Jesús Fierro Jr. dislocated his shoulder, the Fierros — who hadn’t yet paid the bills for their own care — opted out of U.S. health care and headed south to the U.S.-Mexico border.

And no other bills came for at least one member of the family.

The Patients: Jesús Fierro Sr., 48; Claudia Fierro, 51; and Jesús Fierro Jr., 17. The family has Blue Cross Blue Shield of Texas health insurance through Jesús Sr.’s employment with NOV Inc., formerly National Oilwell Varco, a multinational oil company.

Medical Services: For Jesús Sr., 18 days of inpatient care for a severe covid infection. For Claudia, less than 24 hours of emergency care after fainting. For Jesús Jr., a walk-in appointment for a dislocated shoulder.

Total Bills: Jesús Sr. was charged $3,894.86. The total bill was $107,905.80 for covid treatment. Claudia was charged $3,252.74, including $202.36 for treatment from an out-of-network physician. The total bill was $13,429.50 for less than a day of treatment. Jesús Jr. was charged about $5 (70 pesos) for an outpatient visit that the family paid in cash.

Service Providers: Yuma Regional Medical Center, a 406-bed, nonprofit hospital in Yuma, Arizona. It’s in the Fierros’ insurance network. And a private doctor’s office in Mexicali, Mexico, which is not.

The Fierros have been strapped by unusually high medical bills from the Yuma Regional Medical Center.(Lisa Hornak for KHN)

What Gives: The Fierros were trapped in a situation that more and more Americans find themselves in: They are what some experts term “functionally uninsured.” They have insurance — in this case, through Jesús Sr.’s job, which pays $72,000 a year. But their health plan is expensive, and they don’t have the liquid savings to pay their “share” of the bill. The Fierros’ plan says their out-of-pocket maximum is $8,500 a year for the family. And in a country where even a short stay in an emergency room is billed at a staggering sum, that means minor encounters with the medical system can take virtually all of the family’s disposable savings, year after year. And that’s why the Fierros opted out.

According to the terms of the insurance plan, which has a $2,000 family deductible and

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Hit with $7,146 for two hospital bills, a family sought health care in Mexico : Shots

Claudia and Jesús Fierro of Yuma, Ariz., review their medical bills. They pay $1,000 a month for health insurance yet still owed more than $7,000 after two episodes of care at the local hospital.

Lisa Hornak for Kaiser Health News


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Lisa Hornak for Kaiser Health News


Claudia and Jesús Fierro of Yuma, Ariz., review their medical bills. They pay $1,000 a month for health insurance yet still owed more than $7,000 after two episodes of care at the local hospital.

Lisa Hornak for Kaiser Health News

The Fierro family of Yuma, Ariz., had a string of bad medical luck that started in December 2020.

That’s when Jesús Fierro Sr. was admitted to the hospital with a serious case of COVID-19. He spent 18 days at Yuma Regional Medical Center, where he lost 60 pounds. He came home weak and dependent on an oxygen tank.

Then, in June 2021, his wife, Claudia Fierro, fainted while waiting for a table at the local Olive Garden restaurant. She felt dizzy one minute and was in an ambulance on her way to the same medical center the next. She was told her magnesium levels were low and was sent home within 24 hours.

The family has health insurance through Jesús Sr.’s job, but it didn’t protect the Fierros from owing thousands of dollars. So when their son Jesús Fierro Jr. dislocated his shoulder, the Fierros — who hadn’t yet paid the bills for their own care — opted out of U.S. health care and headed south to the U.S.-Mexico border.

And no other bills came for at least one member of the family.

The patients: Jesús Fierro Sr., 48; Claudia Fierro, 51; and Jesús Fierro Jr., 17. The family has Blue Cross and Blue Shield of Texas health insurance through Jesús Sr.’s employment with NOV, formerly National Oilwell Varco, an American multinational oil company based in Houston.

Medical services: For Jesús Sr., 18 days of inpatient care for a severe case of COVID-19. For Claudia, fewer than 24 hours of emergency care after fainting. For Jesús Jr., a walk-in appointment for a dislocated shoulder.

Total bills: Jesús Sr. was charged $3,894.86. The total bill was $107,905.80 for COVID-19 treatment. Claudia was charged $3,252.74, including $202.36 for treatment from an out-of-network physician. The total bill was $13,429.50 for less than one day of treatment. Jesús Jr. was charged $5 (70 pesos) for an outpatient visit that the family paid in cash.

Service providers: Yuma Regional Medical Center, a 406-bed nonprofit hospital in Yuma, Ariz. It’s in the Fierros’ insurance network. And a private doctor’s office in Mexicali, Mexico, which is not.

What gives: The Fierros were trapped in a situation in which more and more Americans find themselves. They are what some experts term “functionally uninsured.” They have insurance — in this case, through Jesús Sr.’s job, which pays $72,000 a year. But their health plan is expensive, and they don’t have the liquid savings to pay their share of

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Never-ending costs: When resolved medical bills keep popping up : Shots

Suzanne and Jim Rybak, inside the craft room where their son, Jameson, would encourage Suzanne to make colorful beach bags, received a $4,928 medical bill months after it was supposedly resolved.

By Gavin McIntyre/Kaiser Health News


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By Gavin McIntyre/Kaiser Health News


Suzanne and Jim Rybak, inside the craft room where their son, Jameson, would encourage Suzanne to make colorful beach bags, received a $4,928 medical bill months after it was supposedly resolved.

By Gavin McIntyre/Kaiser Health News

Every now and then, Suzanne Rybak and her husband, Jim, receive pieces of mail addressed to their deceased son, Jameson. Typically, it’s junk mail that requires little thought, Suzanne said.

But on March 5, an envelope for Jameson came from McLeod Health.

Jim saw it first. He turned to his wife and asked, “Have you taken your blood pressure medication today?”

He knew showing her the envelope would resurface the pain and anger their family had experienced since taking Jameson to McLeod Regional Medical Center in Florence, S.C., two years ago.

As KHN previously reported, Jameson was experiencing withdrawal symptoms from quitting opioids. Suzanne feared for her son’s life and took him to McLeod’s emergency room on March 11, 2020.

There, they encountered a paucity of addiction treatment and the potential for high medical costs — two problems that plague many families affected by the opioid crisis and often lead to missed opportunities to save lives.

Jameson was not offered medications to treat opioid use disorder in the ER, nor was he given referrals to other treatment facilities, Suzanne said. The hospital wanted to admit him, but, being uninsured, Jameson feared a high bill. The hospital didn’t inform him of its financial assistance policy, Suzanne said. And he decided to leave.

Three months later, Jameson, 30, died of an overdose in his childhood bedroom.

Months of red tape

In the following months, the Rybaks received bills from McLeod Health addressed to Jameson. He owed $4,928, the bills said. Suzanne called and wrote to hospital administrators until September 2020, when the bill was resolved under the health system’s financial assistance program.

That was the last they had heard from McLeod Health until the new envelope arrived March 5 — one week before the two-year anniversary of Jameson’s ER visit. That visit was what Suzanne calls “the beginning of the end for my son.”

When the Rybaks opened the envelope, they found a strikingly familiar bill for $4,928.

“I can’t even describe my anger and sadness,” Suzanne said. “It’s always present, but when we received that statement, we were just stunned.”

There’s no national data to indicate how often patients or their families receive medical bills that were previously paid or forgiven, but hospital billing experts say they frequently see it happen. Patients might receive bills for claims their insurers already paid. A reminder statement may arrive even after a patient has submitted payment.

Unlike “surprise bills,” which often result from policy gaps when a provider is out

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Surprise medical bills are the target of a new law. Here’s how it works : Shots

The No Surprises Act is intended to stop surprise medical bills. It could also slow the growth of health insurance premiums.

J. Scott Applewhite/AP


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J. Scott Applewhite/AP


The No Surprises Act is intended to stop surprise medical bills. It could also slow the growth of health insurance premiums.

J. Scott Applewhite/AP

The new year brings new protections for patients with private health insurance who will no longer be blindsided by “surprise” medical bills when they unknowingly receive out-of-network care.

The No Surprises Act, passed by Congress in 2020 as part of the coronavirus relief package, takes effect Jan. 1.

It generally forbids insurers from passing along bills from doctors and hospitals that are not covered under a patient’s plan — such bills have often left patients to pay hundreds to tens of thousands of dollars in outstanding fees. Instead, the new law requires health care providers and insurers to work out a deal between themselves.

Here’s how the law will work and how it might affect insurance premiums and the health care industry.

It may slow premium growth

Some observers have speculated that the law will have the unintended consequence of shifting costs and leading to higher insurance premiums. But many policy experts told KHN that, in fact, the opposite may happen: It may slightly slow premium growth.

The reason, said Katie Keith, a research faculty member at the Center on Health Insurance Reforms at Georgetown University, is that a new rule released Sept. 30 by the Biden administration appears to “put a thumb on the scale” to discourage settlements at amounts higher than most insurers generally pay for in-network care.

That rule, which provides more details on the way such out of network disputes will be settled under the No Surprises Act, drew immediate opposition from hospital and physician groups. The American Medical Association called it “an undeserved gift to the insurance industry,” while the American College of Radiology said it “does not reflect real-world payment rates” and warned that relying on it so heavily “will cause large imaging cuts and reduce patient access to care.”

In early December, the AMA, joined by the American Hospital Association, filed a lawsuit challenging a part of that rule that outlines the factors that arbitrators should consider in determining payment amounts for disputed out-of-network bills. The case does not seek to halt the entire law, but does want changes to that provision, which it says unfairly benefits insurers. Later in the month, groups representing emergency physicians, radiologists and anesthesiologists filed a similar lawsuit.

Such tough talk echoes comments made while Congress was hammering out the law.

Unsettled bills will go to arbitration

The No Surprises Act takes aim at a common practice: large, unexpected “balance bills” being sent to insured patients for services such as emergency treatment at out-of-network hospitals or via air ambulance companies. Some patients get bills even after using in-network facilities because they receive care from a doctor there who has not signed on

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