(WLUK) — Memorial Day is approaching and some will be spending time in the great outdoors.
As the weather warms, the risk of catching Lyme disease increases.
“Lyme disease is an infection spread by tick, caused by bacterium,” explained Rebecca Osborn with the state Department of Health Services.
Osborn said Lyme disease shows no signs of slowing.
“We do have data that suggest that Lyme disease has increased in the last several decades,” she said.
Last year, Wisconsin had more than 3,000 Lyme disease cases. The state health department said the average number of reported cases has more than doubled over the past 10 years.
“If you get a tick bite, we recommend being aware of any symptoms that may be developed within 30 days of that tick bite,” said Osborn.
She added that symptoms include fevers, joint pain, headaches and bulls-eye rashes.
To prevent the bug bite, Osborn said, “Avoid tick habitat, they tend to live in brushy, grassy, wooded areas, if you can stay on trails or try to stay away from tick habitats.”
And if you are in the wood, health experts say you should check your body for tick, take a shower, and dry your clothes on high heat for 10 minutes.
Wisconsin legislators are also bringing awareness to this growing problem by releasing five bills.
Bill draft numbers and an overview of the five bills is listed below. All five bills were circulated for co-sponsorship in the Legislature Thursday, and are circulating until Tuesday, June 4.
LRBs 1758 and 3360 – Requires the DNR to post signs to raise awareness of Lyme disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after visits to be posted in a common area, such as the park entrance, a trailhead or in a campground, in all State Parks, Forests, Recreational Areas, and Trails
LRBs 1759 and 3359 – Requires the DNR to sell bug spray with DEET, which can help to repel ticks, in all State Parks and Forests when their Park or Forest Office or other location in the Park or Forest, such as a concession stand, is open
LRBs 2738 and 3358 – Requires the DNR to post information in certain Parks brochures to raise awareness of Lyme disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after visiting a State Park, and requires the DNR to complete an annual awareness campaign in May of each year, which is Lyme Disease Awareness Month, on digital and print platforms to raise awareness of Lyme disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after spending time outdoors
LRBs 1658 and 3355 – Provides an Epidemiologist Advanced position at DHS’s Division of Communicable Disease with the position dedicated to vector-borne diseases spread by mosquitoes, ticks, and other insects with a specific focus on Lyme disease, including raising awareness about and creating informational materials about Lyme Disease and other vector borne diseases
LRBs 1652 and 3362 – Establishes a sixteen-member Tick-Borne Disease Study Committee to create a report for the legislature on consensus-based recommendations for policy changes on awareness, prevention, surveillance, diagnosis, reporting, and treatment of Lyme disease
After speaking with a legislative aid about the polarization within the medical community, I warned him that bill #5 could have potential problems depending upon who is on the 16 member group. It is always concerning when diagnosis and treatment is discussed as the medical community is completely divided on both aspects.
The bills were released by Senator Cowles and Miller, along with representatives Mursau, and Milroy. They’ve since obtained more co-sponsors. Contact your reps and senators and let them know how much this impacts you and your families.
Headaches are a common symptom of tick-borne illness. Now that I’m in remission, I rarely get headaches. When I do, I’ve become adept at recognizing why I have them. Knowing the nuances of my headaches helps me determine whether my pain is Lymeor babesia related—or from something else entirely—and how to treat it. In short, I now know my own head as well as I know my own body.
I trained myself to recognize gradations and causes of headaches in part as a defense against people who thought they knew my head and body better than I did. In my worst days of battling tick-borne diseases, when I would complain to an acquaintance of a smashing migraine, they might say “It could be the weather.”
I wanted to scream. A headache that severe does not result from a shift in barometric pressure. Sometimes on muggy days with impending rain, I felt fine. My head was clear. I had no brain fog or pain. Other days, it would be beautiful and sunny outside, and I felt my head might explode. Healthy people were outside playing, encouraging me to enjoy the weather—“it’ll be good for you!”—when all I really needed was to take some migraine medication and sleep.
My headaches were caused by tick-borne illnesses, not by the weather. They also weren’t stress-related (though stress could aggravate them), or caffeine withdrawal. If you are bedridden with Lyme, wishing you could just take your head off and put it on the nightstand because it hurts so much, I am here to remind you that your pain is likely caused by a bug in your brain, not by any of these more typical causes.
It’s important to talk to your Lyme Literate Medical Doctor (LLMD) and perhaps get a scan of your brain to make sure nothing else—outside of the scope of tick-borne illness—is going on. It also helps to recognize different headache symptoms, so you can be as specific as possible when talking with your doctor. In my case, headaches related to Lyme took over my whole skull with a throbbing pressure, sometimes making me feel like my brain was getting too big for my skull. Pain caused by babesia was different; that tended to be a migraine, focused on the left side of my head. It was more searing, like someone sawing into the left side of my skull. Babesia headaches caused nausea and light sensitivity, while Lyme headaches caused a more generalized, tolerable pain.
Your own headache symptoms might be different. You might be suffering from co-infections I did not have, and suffer relapsing fevers that can cause their own species of headaches. Do you tend to get migraines for a few days in a row? Are your headaches local or generalized? Do they come on during Herxheimer reactions, or when you are pulsing antibiotics? If you’re female, are your headaches specific to a certain time of the month? Figuring out these nuances can help your LLMD treat you. I recommend keeping a written log, and marking any external factors (like stress or certain foods) that you think might be worsening your symptoms.
These days when I do get a migraine, it’s usually because I’ve pushed myself way too hard neurologically or physically. If they persist, I know my babesia is flaring. But the headaches I usually get now are the “normal” headaches healthy people thought I was suffering from years ago.
I’ve learned to differentiate between these headaches, too. Weather-related headaches mean slight pressure at the base of my skull, across both sides of my head. These I can’t do anything about until the storm passes, but the pain is minimal. Stress-related headaches cause inflammation only on the left side of the base of my skull, creating a knot that I can actually feel with my hand. It helps to rub the knot or get cranial-sacral therapy and sleep. Hormonal headaches feel like a buzzing across my temples, and are relieved with over-the-counter painkillers. Dehydration headaches are a tightening on the top of my head, signaling that I need to drink electrolyte-enhanced water.
All of these headaches are bearable. Getting these typical, that is, non tick-borne disease related headaches reminds me how very, very different they are than the agonizing headaches I suffered years ago. Learn the nuances of your own headaches, talk to your LLMD about them, and don’t let anyone but your trusted medical providers tell you what the cause of pain is in your own body.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com.
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**Comment**
This article takes me back to when I wondered if there would EVER be a day without an excruciating, all encompassing headache. Thankfully, these headaches are a thing of the past due to appropriate treatment. One of the most effective drugs for me was minocycline due to its ability to cross the blood/brain barrier: https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/
For me initially, the headaches were in the meninges (the layer encompassing the entire brain). The inflammation and pain were beyond anything I’d ever experienced. Then they became occipital (base of where head meets neck). Since I met numerous patients that had a Lyme diagnosis as well as Chiari, I had a MRI to rule that out: https://madisonarealymesupportgroup.com/2016/04/02/chiari/ The MRI for me was normal – showing nothing that should cause the type of pain I was experiencing.
I recommend you discuss these options with your practitioner IF you’ve had sufficient antimicrobial treatment but are left with a lot of pain. These substances did not work for me while in treatment for active infection. It wasn’t until after stopping treatment that they worked for me; however, you may be different.
I do feel one mistake people make is quitting treatment too soon. ILADS recommends being symptom-free for 2-3 months before stopping any treatment. As you see from the article on Babesia, Dr. Horowitz recommends 9 months to a year of steady 3 weeks on, one week off treatment. Many quit this too soon. It’s important to overlap treatment as well with numerous things hitting all the various angles. It’s also important to switch meds when you reach plateaus. My husband and I were treated with 4.5 years and have relapsed twice requiring 2-3 month stints of treatment. Make sure you see your practitioner if symptoms return. Read the following articles for examples to discuss with your practitioner:
WLN is actively seeking doctors to attending continuing medical education courses. Please contact WLN if you know any: https://www.wisconsinlymenetwork.org
The ninth meeting of the Tick-borne Disease Working Group (TBDWG) will be held at the Holiday Inn Washington-Capitol, 550 C Street SW, Washington, DC 20024, from 8:30 a.m. to 5:00 p.m. Eastern Time. The TBDWG members will focus on plans to develop the next report to the HHS Secretary and Congress on federal tick-borne activities and research, taking into consideration the 2018 report.
Registration:In-person attendance at the meeting is limited to space available. On the day of the meetings, seating will be provided first to persons who have preregistered. People who have not preregistered will be accommodated on a first come, first served basis if additional seats are still available 10 minutes before the meeting starts.
Members of the public may also attend the meeting via webcast. Instructions for attending via webcast will be posted one week prior to the meeting.
Public Comment – Information and Instructions
The public will have an opportunity to present their views to the Working Group during the meeting’s public comment session or by submitting their views in writing. Comments should be pertinent to the meeting discussion.
Verbal comments (in-person):
Requests to provide verbal public comment must be submitted via email by midnight Tuesday, May 28, 2019 (Eastern Time) to tickbornedisease@hhs.gov. In the Subject line please enter: Verbal Public Comment – June 4 Meeting.
A total of 30 minutes has been set aside for verbal comments. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible. If more requests are received than can be accommodated, speakers will be randomly selected.
Your remarks will be broadcast over a live webcast and will become part of the archived recording and meeting summary that will be posted on this website.
Written comments (posted on this webpage and accessible to the public):
Written public comments must be submitted via email by midnight Tuesday, May 28, 2019 (Eastern Time) to tickbornedisease@hhs.gov. In the Subject line please enter: Written Public Comment – June 4 Meeting.
When you submit your written comment, please include a statement letting us know how you would like to be identified with your comment. You may choose to use your name or to be anonymous. You may also list your city and/or state. If you are providing comments on behalf of an organization, please include the name of the organization. We cannot post your comment until you let us know how you would like to be identified.
Comments should either be provided in the body of your email, or in an attachment in Word format and equivalent to no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
We cannot post graphics, images, text boxes, or tables. If included with your comment, we will not be able to retain them.
A Lyme disease infected tick is pictured crawling on wood in this undated file photo. (Getty Images)
Nice weather is here and you’re out and about? Be on the lookout for eight-legged menaces on the march. Tick populations armed with the Borrelia bacteria are increasingly creeping into Canada, expanding and growing – and so too the number of tick-borne diseases, predominantly Lyme.
It’s a ticking Lyme bomb, and vastly under-detected across Canada. Dr. Vett Lloyd, a researcher and biology professor at Mount Allison University in New Brunswick, says eight out of 10 cases are being missed – along the coast, the number is higher.
The majority of Canadians who have Lyme disease are slipping through the cracks.
“Diagnosis is missed when Lyme disease is not considered as a diagnosis by the physician or patient and when the standard blood testing procedure is fault,” says Lloyd, a member of the new Lyme Disease and Tick-Borne Illnesses Task Force.
Decades-old testing protocols are a failure. Patients and advocacy groups report access-to-care a nightmare. If the disease is treated promptly with antibiotics, people get better. No treatment, and the illness becomes chronic and debilitating. Even deadly.
“It’s a serious and growing epidemic,” says Sue Faber, co-founder of the advocacy group LymeHope. She believes that because of so many missed cases of Lyme disease, “instead of 2,025 annual cases reported by Public Health of Canada, we are actually dealing with approximately 56,000 cases every year in Canada.”
Lyme-disease-carrying ticks are deposited randomly by our friendly migratory birds, such as wrens and robins. Lloyd actually got bit by a tick in her backyard – she describes her Lyme disease battle as “hell.” That’s how many would also describe navigating the health care system for diagnosis and treatment.
Many Canadians are being alienated by the conventional health-care system and seek costly private health care, even beyond the country’s borders, at their own expense, says Lloyd. Others follow home remedies obtained from Dr. Google and either natural products or antibiotics purchased from the black or grey market.
Adds Lloyd: “When Canadians are obtaining health care from the internet and antibiotics from their local drug dealers, I think it is safe to say that the current situation is both dangerous and cruel.”
Dr. Vett Lloyd. (Supplied photo)
Climate change is empowering ticks to grow in numbers. places and pathogens, says Mary Beth Pfeiffer, investigative journalist and author of Lyme: The First Epidemic of Climate Change. “By virtue of the developed world’s lifestyle and influence… we have paved the way for the first global epidemic abetted by climate change. Warming may not have caused this scourge, but it most certainly is enabling it.”
Winnipeg resident Joanne Seiff describes Lyme as “insidious. Being sick with Lyme is awful, and it creeps along – you feel worse and worse but it’s hard to get anyone to believe you.”
She got sick in May, 2016 with what felt like the flu.
“I had recurring fevers, swelling and fatigue that progressed to swollen joints, lymph nodes, and other Lyme symptoms.”
She saw multiple physicians, including specialists, and was dismissed in every case.
“Canadian health systems are unprepared for this. Doctors aren’t well-trained, labs don’t test for all the strains, cases are under-reported and there’s a real sense of disbelief that Lyme – and other tick-borne illnesses – exist here,” says Seiff, author and knitwear designer at joanneseiff.com.
Doctors need to become better educated and responsive, says Seiff, and “follow the protocol that suggests an immediate, prophylactic dose of doxycycline if Lyme disease is at all suspected.”
She also believes laboratory testing needs major updating and tick research proper funding.
Adds Lloyd: “The cost to individual Canadians ill with Lyme disease, and their families and communities, is already appalling in terms of personal suffering. At some point that will translate into a societal cost and change will have to happen.”
It’s a polarizing issue, and what’s more, Faber, a nurse, wants the public to know that
“human to human maternal transmission has been demonstrated in peer-reviewed medical and scientific literature. Lyme disease can be transmitted from mother-to-baby in utero causing miscarriage, death and/or newborn infection.”
Both Faber and LymeHope (lymehope.ca) co-founder/lawyer Jennifer Kravis believe they unknowingly transmitted Lyme disease to their children while pregnant. The medical world isn’t convinced, including the Health Canada website, that says “there is not enough evidence to confirm that Lyme disease during pregnancy has adverse effects for the fetus…”
Meanwhile, if you suspect you have Lyme disease, Jim Wilson, of Canadian Lyme Disease Foundation, advises “asking your doctor for the standard Lyme test with the full understanding that if the results comes back negative that in no way rules out Lyme disease.” More guidance is available at canlyme.com, including prevention and safe tick removal.
Protect yourself with tips from microbiologist and author Jason Tetro:
When outside, wear long, light-coloured protective clothing and tuck in pant legs into socks or boots.
Always use a product containing DEET such as Off! Deep Woods Tick.
After being outdoors, check your entire body for ticks including under the arms, inside the belly button and in and around the hair. Check your clothing, gear and pets for ticks.
Shower within two hours of coming indoors and throw clothing in a dryer on high heat for 10 minutes.
Yolanda Hadid Opens Up About Her Battle With Lyme Disease
**Comment**
Once again, an independent Canadian tick researcher has proven that climate change has ZIPPO to do with this, despite what a journalist selling a book with that title states.
I find it highly interesting that groups will promote Pffeifer’s book but not actual research showing how ticks proliferate. To state that climate change is “empowering ticks,” shows a real lack of understanding of ticks. They are extremely ecoadaptive and will be the last species on the planet besides the IRS.
It’s important we do not fall prey as Science has to populism and schticks in efforts of obtaining grant money for research. Lyme/MSIDS has been driven by politics and power since inception.
We should know better and refuse to climb into bed with the devil.
Climate data never has and never will help extremely sick patients. So much research on practical issues is screaming to be done that will actually make a difference.
Opinions expressed by contributors are their own.
