Madison Area Lyme Support Group

From 2007 to 2021, private insurance claim lines with Lyme disease diagnoses rose 357 percent in rural areas and 65 percent in urban areas.

[Editor’s note: “claim lines” are not the same as individual Lyme cases. A claim line is a request for insurance reimbursement. One Lyme patient may have several claim lines, for lab tests, x-rays, etc.]

These and other findings on this tick-borne, bacterial illness were captured in an infographic just released by FAIR Health. The national, independent organization used its database of over 36 billion privately billed healthcare claims to conduct its 15-year analysis of Lyme disease.

This analysis builds upon a previous FAIR Health infographic that studied 10 years of Lyme disease data. Click here for the infographic released today.

Rural and urban differences

The infographic reveals key differences in prevalence of Lyme disease when comparing rural and urban areas. From 2016 to 2021, claim lines with Lyme disease diagnoses increased 60 percent in rural areas and 19 percent in urban areas, with diagnoses peaking nationally in June and July of each year.

During these summer months, rural areas, on average, had a greater share of claim lines associated with Lyme disease diagnoses than urban areas. From November to April, however, claim lines with Lyme disease diagnoses occurred more often in urban than rural areas.

Geographic distribution

In 2017, the states with the greatest proportion of claim lines with Lyme disease diagnoses as a percentage of all diagnoses in the state, from highest to lowest, were New Jersey, Connecticut, North Carolina, Rhode Island and Vermont.

Given that Lyme disease has been historically associated with the Northeast and upper Midwest, the status of North Carolina as the state with the third highest percentage of Lyme disease claim lines in 2017 suggested marked expansion to a new region. By 2021, however, North Carolina had dropped from the list.

The top states in 2021, from highest to lowest, were New Jersey, Vermont, Maine, Rhode Island and Connecticut. Maine, which was not previously on the list of top five states for Lyme disease claim lines, assumed third place in 2021, suggesting a growing presence of the tick-borne illness in the state. Connecticut and Vermont switched places, with Vermont emerging as number two and Connecticut dropping to number five.

Long-term symptoms of Lyme disease

Although Lyme disease is treatable with antibiotics, some Lyme patients later develop conditions with long-term symptoms, such as fatigue, muscle and joint pain and cognitive issues. Such conditions have been linked to post-treatment Lyme disease syndrome, sometimes called chronic Lyme disease.

To identify later diagnoses associated with Lyme disease, FAIR Health examined a statistically significant cohort of individuals in its private insurance claims database from 2017 to 2021, comparing the prevalence of certain diagnoses among Lyme patients to all patients in the cohort.

The analysis found that diagnoses such as malaise and fatigue and soft-tissue-related issues were more common among Lyme patients than among the total patient population. Across all age groups, patients with Lyme disease were generally more likely to have these apparently associated diagnoses than all patients in the cohort.

FAIR Health President Robin Gelburd stated, “Lyme disease remains a growing public health concern. FAIR Health will continue to use its repository of claims data to provide actionable and relevant insights to healthcare stakeholders seeking to better understand the ongoing rise of Lyme disease cases.”

This is the third study FAIR Health has conducted on Lyme disease, the first appearing in an infographic released in 2017 and the second in a white paper published in 2019.

About FAIR Health

FAIR Health is a national, independent nonprofit organization. It possesses the nation’s largest collection of private healthcare claims data, which includes over 36 billion claim records and is growing at a rate of over 2 billion claim records a year.

SOURCE OF PRESS RELEASE:  fairhealth.org

______________

For more:

• https://madisonarealymesupportgroup.com/2019/12/16/lyme-insurance-claims-make-huge-jump-in-u-s/
• https://madisonarealymesupportgroup.com/2019/12/14/trends-and-patterns-in-lyme-disease-an-analysis-of-private-claims-data/
• https://madisonarealymesupportgroup.com/2019/12/14/new-research-on-lyme-disease-surges/

In a new Netflix documentary, “Not Just a Girl,” country pop mega-star Shania Twain discloses details of her harrowing experience with Lyme disease.

The July 26 release of the film has prompted a lot of media coverage about the Canadian-born singer of such hits as “Man! You Make Me Feel Like a Woman” and “You’re Still the One.”

Watch what Good Morning America had to say.

Here are samples of other news coverage.

Today:  Shania Twain details Lyme disease symptoms: ‘I was afraid I was going to fall off the stage

Popsugar:  Shania Twain on Battle With Lyme Disease: “I Thought I’d Lost My Voice Forever”

Yahoo News:  Shania Twain opens up about ‘scary’ Lyme disease symptoms – what is the condition?

For more:

• https://madisonarealymesupportgroup.com/2020/02/18/shania-twain-on-performing-after-lyme-disease-battle-it-would-have-killed-me-to-never-sing-again/
• https://madisonarealymesupportgroup.com/2018/03/08/shania-twain-on-the-discipline-of-maintaining-her-health-after-ld/
• https://madisonarealymesupportgroup.com/2017/07/08/shania-twains-vocal-chord-disorder-caused-by-lyme-disease/

By Jamison Hill

Aug. 1, 2022

The last few months have been rough. I have been going through a brutal intake interview for In-Home Supportive Services, which provides me with caregiving hours. The intake interview did not go well.

Throughout the interview, I was required to demonstrate, both verbally and physically, how sick I am and the limitations that my illness imposes upon me. The irony of this is that in order to prove how sick I am, I had to make myself sicker.

I had to speak more than I normally speak. I had to move more than I normally do. I had to use emotional and cognitive energy that I normally reserve for other things.

The case worker performing the interview didn’t seem to understand my illness. I tried to explain that my illness is not a steady thing. It’s unlike disabilities that are the same from one day to the next. My illness varies from day to day.

On good days, I might be able to sit up and even take a few steps. On bad days, I’ll be lucky to be able to get out of bed and take my mobility scooter to the bathroom. Standing up is out of the question on bad days. And lately, because of the stress and exertion of this intake process, there have been an exceedingly high number of bad days.

A demeaning and detrimental process

What bothers me most about the process of proving how sick I am, is that it is demeaning to my psyche and detrimental to my health. If someone is sick, they shouldn’t have to prove it. And they definitely shouldn’t have to make themself sicker to prove it.

No one should have to put their illness on display like an exhibit at a science fair. But because many chronic illnesses are invisible — the symptoms are not clearly noticeable — we often have to do just that.

We have to push ourselves to the brink of exhaustion just so someone can catch a glimpse of what we’re going through. And then whoever is observing us carries on with their life while we are confined to bed for days or weeks, recovering from proving the legitimacy of our illness.

It reminds me of a story Michael J. Fox told in one of his memoirs. He was reflecting on a time when he testified before Congress about his Parkinson’s disease. And in doing so, he chose not to take the medications that improved his condition and made it manageable, more or less.

Because of this decision, his illness was on full display for the politicians in the room and the people watching on TV. His hands were shaking. His voice was wavering. It was scary, but that was the reality of his illness.

Because Fox had not taken his medication, some commentators said that he was putting on an act, that he wasn’t being truthful about his illness. In reality, he wasn’t just being truthful, he was risking his health for the sake of being truthful. He was giving people a glimpse at the worst of his illness and making himself sicker in order to do so.

More people believed me when I was sicker

Six years ago, I was completely bedridden — unable to lift my head off a pillow, too weak to eat or speak. Now my health has improved some, and I can get out of bed and speak for short amounts of time. But when it comes to proving how sick I am, I have never struggled more.

When I was at my sickest, it was easier to show others how sick I was. More people believed me because no one in their right mind would go without speaking or eating just so people thought they were sick. No one would stay confined to bed literally all the time just to get sympathy or money or whatever. But now that I can get out of bed, things are more complicated.

At first glance, it’s not always obvious how sick I am. But if you observe me for any significant amount of time, it’s clear to see that I am not a healthy person. You won’t see me eating in restaurants and going to concerts and seeing movies and watching ball games and swimming in oceans and hiking mountains and running on beaches and flying in planes and getting married and having children and doing all of the other things I would do if I were healthy.

All the proof I need

And that, my friends, is all the proof I need. I so badly want to live a healthy life. I want to be active. I want to move. I want to do everything I can as much as I can. And yet, that mentality is at odds with my illness. To minimize my symptoms, I must rest. I must ask for help. I must delay. I must do things later, when I am feeling better.

Even still, here I am, more than a decade into my illness and still having to prove that I’m sick. It’s a soul-crushing, pride-swallowing process that won’t stop as long as my illness exists. I hate it. But perhaps one day it will stop, and I’ll no longer have strangers judging how sick I am.

Jamison Hill has written about his struggles with myalgic encephalomyelitis and Lyme disease in such publications as The New York Times, The Los Angeles Times, and the Washington Post, as well as in his memoir When Force Meets Fate. This article is republished from his blog, Jamison Writes.