Woman warns of Lyme disease’s lingering effects
SUN PRAIRIE, Wis. – As Wisconsin enters peak tick season, a Sun Prairie woman is sharing her story battling Lyme disease, saying there’s more to it than you might think.
“First of all, I am a plant freak. I love them,” Alicia Cashman said. “I used to be outdoors all the time.”
Now, Cashman brings the outdoors indoors.
“Now I look at the outdoors like you were a soldier in Vietnam and there’s landmines,” she said. “Where’s the landmine? I don’t know.”
Cashman’s landmines are a bit smaller. She’s always on the lookout for ticks after she and her husband began having symptom after unexplained symptom about 12 years ago.
“Red, hot to the touch, I developed a fever. I started seeing flashing lights,” she said. “All of a sudden your life just goes to pot, and you can’t figure out why.”
Her husband developed anxiety and severe insomnia. In both cases, Cashman said it all came back to Lyme disease.
“Lyme is not what you think it is,” she said. “It’s way more complicated and complex.”
“We do know if people aren’t treated early, sometimes they go on to have lifelong symptoms,” said Susan Paskewtiz, a professor and chair of the University of Wisconsin Madison’s entomology department.
Paskewtiz said the initial infection of Lyme disease can change people’s bodies.
“Perhaps you’re forever altered as a result,” she said, adding that it can include heart issues, neurological symptoms and migrating joint pain, all things Cashman experienced. But early treatment can stop that, and that starts with early detection.
According to Paskewtiz, Wisconsin ranks among the top states for diseases transmitted by ticks.
“We have a lot of deer ticks here,” she said. “We have some places here where we’ve collected more ticks than recorded in the country, that’s very focal, a couple locations like that, but we’re high.”
Officials are already warning of ticks this year, and the city of Madison has seen the number of deer ticks rise significantly this month, according to a recent release.
Paskewitz said not everyone gets the characteristic bulls-eye type mark indicating Lyme disease, so flu-like symptoms including muscle aches and a fever can be other signs.
She said while there are usually about 3,000 to 4,000 reports of Lyme disease in the state a year, cases are likely under-reported, and she estimates the real number to be 10 times that.
Paskewtiz said there are two important things Wisconsin residents should know this year. Ticks can be as small as a freckle and found in places you might not expect.
“Usually, we recommend to people lawns are a pretty safe place,” she said, “but we’re finding them in those locations, as well.”
Cashman can still visit her plants outdoors, it just takes a bit more work. She gears up, wearing light-colored, protective clothing, and chemically treats both her clothes and yard.
“I’m doing great, but it’s taken 4 1/2 years of treatment, and I literally went from, ‘I want to die,’ to ‘I have my brain back,’” she said. “Where before, I didn’t think about it, now it never leaves my mind.”
She hopes others will keep the disease in the back of theirs.
“You can’t afford to be lazy,” she said.
Cashman now leads the Madison Area Lyme Support Group, which is presenting a free viewing of the documentary “Under Our Skin” Saturday at the East Madison Police Station May 4. She recommends those diagnosed with the disease check out the nonprofit organization the Wisconsin Lyme Network.
The Centers for Disease Control and Prevention describes patients with symptoms after the treatment of Lyme disease as having post-treatment Lyme disease syndrome, and the organization writes its cause isn’t known.
The CDC said alternative treatments for Lyme disease have been associated with complications, and its best to use care and consult a physician.
So thankful Dr. Paskewtiz filled in many of the points I wasn’t able to make. Although I shared how all my initial symptoms were gynecological and that I believe Lyme to be a STD as well as spread congenitally, they opted to leave that intel out. https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/
Unfortunately, the statement that a tick’s gut is a literal garbage can full of pathogens of which Lyme is only one of many, also was omitted. https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/
We are slowly pushing this thing up the hill. Just a few short years ago, nothing would have been said about the “lingering symptoms,” so that’s a huge improvement, but of course there’s much, much more to be done. https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/ BTW: Ahern states it’s 60% that have lingering symptoms – so it’s a significant subset of patients.
It is demonstrated that the chronic symptoms of Lyme disease are a reality, referred to as: Chronic Lyme disease (CLD); or Syndrome- Post-treatment of Lyme disease (PTLDS).
As we said at the beginning, the CDC does not recognize the term Chronic Lyme Disease (CLD) because it is confusing.
With respect to this, we conclude that the CDC is wrong because data demonstrated that months or years after adequate treatments with antibiotics, patients can have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD).
I told the reporter that had I followed the advice of the CDC I’d be dead by now. The tiny but overriding statement at the end of the article about “alternative treatments for Lyme disease have been associated with complications,” is a complete “Catch-22,” because anything but essentially 21 days of doxycycline is considered alternative to the CDC and that’s a huge problem. And by “consulting a physician,” that’s also setting people up for failure as there are only a handful of doctors in the entire state of Wisconsin who are properly trained and treat this monster appropriately. The same can be said of other states as well.
Sigh……well, there’s always next year!