SYRACUSE, N.Y. (WSYR-TV) Ticks are in our yards and they’re saturating Central New York. One bite can change everything. Most people do not know Central New York is an epicenter for tick-borne disease. Most recent data indicates a 439% increase in Central New York between 2008 and 2018.
What are some of the symptoms of Lyme disease?
- Brain fog
- Joint Pain
- Extreme Fatigue
Doctors and scientists struggle to agree on how to get this under control.
TRACKING DOCTORS’ PROGRESS:
Saravanan Thangamani has been testing ticks from across New York State since the lab inside Upstate’s Institute for Human Performance opened in 2019. His project has blossomed into a crucial public safety tool. Each Spring Thangamani sees about a 10% increase in the rate of prevalence. Nearly 8% of the ticks they test carry more than one pathogen.
The big three tick-borne diseases in CNY right now are:
They’re spreading fast. If they’re not caught, some cases can turn deadly. For some of these pathogens, there’s no tell-tale rash to give it away. Even with Lyme disease, 20-30% of people don’t get a bullseye rash. Ticks are around all year round, so it’s important to be mindful, no matter the season.
Central New York is an epicenter for tick-borne diseases, and doctors here know that.
So why are so many people having such a hard time getting diagnosed? It’s partly because the symptoms are so vague, and they mimic other diseases like the flu, MS, lupus, and even arthritis.
The big barrier lies at the center of our medical community itself. From the warning signs to how long Lyme lingers, doctors disagree because the two main agencies who set the standard can’t get on the same page.
“Our practice follows ILADS which is the International Lyme and Associated Diseases Society,” says Jennifer Kohler, a Nurse Practitioner with Integrative Medicine of CNY. “With ILADS guidelines we recommend treating any tick bite because we know how aggressive Lyme can be.”
Meanwhile, The CDC recommends 36 hours. Dr. Kris Paolino, an Infectious Disease Specialist with Upstate Medical University says he generally leans more towards 24 hours because he believes you can still get transmission at that point.
So, depending on what guidelines they follow and their experience, doctors have different opinions on when to treat a tick bite. There’s also confusion over how to treat it.
“If you have a tick bite and you catch it within that first 72 hours of the bite, the studies that have looked at this have indicated you can decrease the risk of transmission of Lyme disease if you give a single, double dose of doxycycline,” Dr. Paolino said.
The problem Dr. Paolino sees with this type of prophylactic approach is that it’s not 100% effective, and that’s not always communicated to the patient. With symptoms being so vague, it’s easy to get bounced around without answers, especially if you never noticed a tick, to begin with.
“You could be sent to a specialist for the joint pain, you could be sent to a specialist for headaches, and I think patients get frustrated because now they have multiple people who are seeing them for one symptom and maybe the whole picture is being missed.”Jennifer Kohler
A lot of patients suffering end up feeling alone, unheard, and helpless, but even if you feel that way it doesn’t mean you can’t get better. It just means you have to fight for yourself until you find a doctor who will fight for you and with you.
HEAR FROM SURVIVORS:
BRENNA OSMUN: At 22-years-old Breanna’s life was flipped upside down. What started as a harmless bonfire sparked a permanent change in her life. Breanna noticed a rash on her leg. Shaped like a bullseye, her family immediately recognized the tell-tale sign of Lyme disease.
Like so many others, what should be an obvious red flag wasn’t enough for a doctor to diagnose. Within four days Breanna tested positive, and days later, she lost her ability to walk. It was up to a neurologist to save her life.
“He told my dad and I, you’re either going to die or we’re going to save you.”Breanna Osmun
Two months of I.V. antibiotics saved her life. Breanna’s second chance came with years of relapses until she saw what is called a “Lyme literate MD,” a specialist rarely covered by insurance.
“I felt my entire body was giving out. I felt like my organs were shutting down. I felt everything full force”
Breanna didn’t just have Lyme. Doctors at Integrative Medicine of Central New York diagnosed her with two other tick-borne diseases: Babesia and Bartonella. All three infections are treated differently and overlap like this is pretty common.
According to Jennifer Kohler, a Nurse Practitioner there, common symptoms of Babesia can include chills, fever, night sweats, and headaches.
Breanna was treated with more than a dozen herbs and antibiotics. Eventually, she reached remission, but it was a long, emotional road to get here. She was bedridden, missing out on memories and milestones she’ll never get back. But she wants to encourage everyone going through what she endured to fight.
“It gets better. It really, really does. And my life changed for the better I wanna say. Even though I was really sick, it does get better. And having that support really helps you. Don’t give up. Please don’t give up. I didn’t and I’m still alive.”
ROYALE SCUDERI: As the Executive Director of the Central New York Lyme and Tick-Borne Disease Alliance, Royale has met many walking in her shoes.
12 years ago Royale’s life was changed. Her husband was in Iraq, and Royale had to take care of her four children alone, while she was sick and getting sicker.
“I went through many months, many doctors, thousands of dollars. I just got sicker and sicker until I couldn’t work, I couldn’t mother.”
The treatment was scarce. She had to drive to Long Island for treatment for a year.
Three years ago, she helped start the non-profit now made up of a team of doctors, researchers, survivors, and scientists, all working hand in hand.
“I talk to these people who are desperate, who feel unseen, lonely, isolated, desperate for someone to listen and I can say I know what you’re going through.”Royale Scuderi
NICOLE SOMMAVILLA: Her story with Lyme disease started on her college campus in 2013.
She woke up on Valentine’s Day with a fever, feeling lightheaded, and nauseous. Rapidly everything declined. Her life was on the line.
“I actually became septic. They said ‘your organs are shutting down we don’t know if you’re going to make it.’”Nicole Sommavilla
It wasn’t until years later that doctors discovered Nicole was living with Lyme disease.
Her treatment became extensive. At one point, up to a dozen medications were needed to treat her Lyme, Babesia, and Anaplasma symptoms.
“I went from years of oral medications and injections to just one medication I’m on now and just a lot of maintenance with diet and knowing when not to push myself past my limit, it’s a lot of self-awareness.”
IMPORTANT LINKS AND RESOURCES:
- CNY Lyme and Tick-Borne Disease Alliance
- CNY Lyme and Tick-Borne Disease Alliance Facebook Page
- Upstate Tick Testing Lab
- Lyme Disease Association
HOLDING ON TO HOPE:
It’s pretty evident we have a long way to go with research, treatment, awareness, and understanding of the tick-borne disease.
But let’s not get discouraged, and instead, focus on all the progress that *is* being made.
Researchers are actively working on a Lyme vaccine, and with each study, it passes through, a vaccine is inching closer to reality.
“Really optimistically, I think five years would be the earliest I could see something being rapidly approved by the FDA.”Dr. Kris Paolino
A MESSAGE FROM NICOLE:
If you’re fighting Lyme right now, please don’t give up.
Don’t quit in the darkness. Most days it may feel easier to give in, but hang on. Lean into your support system and keep fighting. Because joy and healing are coming.