Articles
Tick Talk
July 25, 2024
Your Lyme disease survival kit
Elisheva Braun
Lyme disease has enjoyed its day in the sun with climbing awareness of late.
Is Lyme the rampant ravager some claim it is?
Is it as no-sweat treatable as others believe?
How detectable, diagnosable, and dealable are these tick-borne bacteria?
Amid so much fear and misconception, can we find the truth?
The doctor speaks
The Voice sat down with Dr. Ira Haimowitz for some myth-busting, facts, and preventative measures
Progression
“Lyme disease progresses in stages,” says pediatrician Dr. Ira Haimowitz. “The earliest sign can be a rash that appears up to 30 days after a tick bite. This rash may look like a bullseye around the bite or occur in a different area. However, only about 50 percent of people develop this rash. It’s fortunate if it’s caught at this early stage because that’s when it’s still extremely curable with antibiotics. As the disease progresses, symptoms may include achiness, low-grade fever, and joint discomfort, which can still be treated effectively with oral antibiotics. If left untreated, Lyme disease can lead to more serious complications involving joints or neurological issues, sometimes requiring IV antibiotics.”
Catching the infection early is crucial, as it can have serious effects on the heart, brain, and major joints. On the other hand, it’s often over-diagnosed.
“There are parents who assume that every kid who has fever or is irritable and not himself has Lyme disease, especially after removing a tick a few days before,” Dr. Haimowitz notes. “Not every child with a fever has Lyme disease. I recommend testing for Lyme disease only when children show symptoms directly related to it, such as unexplained swelling in a knee or elbow or prolonged fevers with no other cause.”
The only clinical testing available is a blood test that checks for antibodies to Lyme disease.
“It’s important to note that once someone has had Lyme disease, they can’t use a blood test to determine if they’re cured because the antibodies may remain in their system. Therefore, if a child is treated successfully and shows improvement in the early stages, they’re considered to be in recovery.”
Prevention
Dr. Haimowitz likes to tell parents, “We live in a tick-filled area and it’s unusual for a family not to experience a tick bite. The best way to prevent Lyme disease is to check yourself and your family members diligently every day for ticks. If you find a tick tonight, you know it wasn’t there last night if you check every night. Even though deer ticks can carry the Lyme bacteria, the risk of infection is extremely low if the tick has been attached for less than 24 hours. It’s important to check frequently because otherwise, there’s no way to know how long the tick has been imbedded.
“Keep in mind that ticks can be very small,” he continues, “sometimes no bigger than a pencil point, and they often hide in creases and crevices, making them hard to spot. I recommend checking your children for ticks when they’re in the bathtub. That makes it easier to do a thorough check.
“To minimize the risk, avoid letting your child play in dense foliage or tall grass. When possible, dress children in long pants and long sleeves, as more exposed skin increases the likelihood of a tick attaching. If you’re in wooded areas or if your kids are playing outside, consider using a protective spray with DEET to help prevent tick bites.”
Before you panic
You pulled a tick off your child. Now what?
There’s no reason to freak out from just any tick; there are different kinds. Dog ticks, or wood ticks—large, meaty ticks—don’t transmit disease. Only the smaller deer ticks carry Lyme disease.
Ticks can’t transmit bacteria very quickly. Even once they bite, if it’s removed within 48 hours, there’s no need to test the tick or the child unless the child has strong symptoms. The risk of transmission to a human host within that timeframe is almost zero.
Finally, don’t panic about any rash that features a red ring with a central clearing. Lot of kids get a localized allergic reaction from mosquito bites that can look like the Lyme bullseye rash. The difference is that mosquito bite reactions have a swollen, hivelike appearance, while the bullseye rash is flat.
Removal
To remove a tick, use a sharp tweezer. Hold it exactly perpendicular to the tick and pull it out in one move. This usually gets the tick out whole, but don’t worry if there’s a piece left behind. Once the tick is dead, it can’t do further damage.
Boots on the ground
Through his organization Life for Lyme, OJC founder and CEO Duvi Honig helps the Lyme community navigate diagnosis, treatment, and post-infection recovery. Here, he shares his field experience.
A new person
Until a few weeks earlier, 13-year-old Eliyahu was known for his success in yeshivah, his easygoing smile, and his love for basketball. Suddenly, he lost interest in learning, stopped going to shul, and took off his yarmulke. It was an alarming transformation—he was slipping in every area of his Yiddishkeit. Desperate for answers, his parents took him to doctors, therapists, and mechanchim, anyone who could help them get their son back. Nothing helped.
When they had exhausted all other options, Eliyahu’s mother reached out to Life for Lyme. After hearing the symptoms, Duvi Honig of Life for Lyme encouraged them to take a test.
“He was positive,” Honig says. “They were incredibly lucky to get a clear positive result, as they never would have considered treatment without a clear-cut diagnosis.”
Once the results were in, the pieces started falling into place. Lyme disease caused brain fog, so Eliyahu had difficulty learning, fatigue which made it hard to get up for minyan, and sensory issues so wearing a yarmulke was uncomfortable. But he hadn’t expressed any of that, and his parents were completely in the dark.
It’s a couple of years later, and Eliyahu is back in yeshivah and flourishing.
“It’s wonderful to see him back to his healthy, happy self,” Mr. Honig says, “but it’s unsettling to consider what might have happened if the Lyme had gone undetected.”
Diagnosis: “It’s in your head”
Misdiagnosis of Lyme disease is not uncommon. Doctors don’t call it the Great Imitator for nothing.
Life for Lyme has seen so many patients who complained of frequent headaches, night sweats, and more, whose root cause—Lyme—went undiagnosed. Symptoms can include fatigue, joint pain, neurological issues, and cognitive dysfunction, among others. Co-infections can add to the complexity of symptoms, making getting a diagnosis and treatment even more challenging.
Often, these patients complaining of debilitating pain, headaches, or seizures are sent for psychiatric help.
To Mr. Honig, these cruel misdiagnoses truly sting.
“Unfortunately, when they can’t find cause, it’s not uncommon for doctors to claim that people’s symptoms are in their heads or that they’re complaining to gain attention. How long would somebody enjoy being pampered in a facility? A week, a month? And how can you make up these symptoms? Pretend seizures? It would be laughable if it weren’t so sad.”
Rochel Leah contacted Life for Lyme after being diagnosed with Multiple Sclerosis. Half of her body was paralyzed, and an MRI showed lesions on her brain. After she was on steroids in the hospital for two weeks with no improvement, the doctors told her she would never recover and would be in a wheelchair for life. Parenthetically, they also mentioned that she was Lyme positive and advised her to investigate it once the MS was under control. As it turns out, the Lyme wasn’t a by the way. She immediately started on antibiotics, and after just 24 hours, Rochel Leah defrosted and was walking on her own two feet. She was fortunate to have had no co-infections, so her recovery was quick and complete.
Mr. Honig doesn’t want parents to think Lyme every time their child is achy or fatigued.
“It’s tricky, as there can be so many reasons why children might be struggling. Of course, the most obvious causes need to be checked out first, but Lyme should never be ruled out if things don’t add up. This is especially important when it comes to children, as they may be unable to express what feels wrong. Every illness has a cause. We must do everything in our power to find it.”
Hide and seek
Tick-borne pathogens hide in the body and evade detection. The bacteria that set off Lyme Disease, for example, can form protective structures called biofilms, making it difficult for antibiotics to reach and kill them. This can lead to chronic infection and ongoing symptoms. In addition to the direct effects of the infections themselves, the immune response to these pathogens can also contribute to chronic illness. In some
cases, the immune system becomes overactive, leading to inflammation and autoimmune reactions. This can further exacerbate symptoms and complicate treatment.
Sadly, there are many people misdiagnosed with non-curable diseases. Since there’s no completely accurate test, the diagnosis is mainly clinical. Medications are prescribed to alleviate symptoms, but they don’t tackle the root cause. In many cases over the years, Lyme spirochetes were found, often after it was too late, in autopsies.
Treatment
When dealing with or suspecting Lyme, seeking an educated doctor is key.
“Some doctors recommend that their patients wait 30 days and only come back if there are symptoms after that time,” Mr. Honig says. “Thirty days can be too long. By that time, the patient could already be very sick. Also, in some patients, symptoms show up way past the 30-day mark, making it much harder to diagnose and to treat. Other doctors give a one-off dose of antibiotics and then take the wait-and-see approach. While antibiotics suppress symptoms, making the patient feel better, once the infection is suppressed, it often returns with a vengeance and is much harder to treat. Very often, these patients get unexplained symptoms a while later. Assuming they got rid of the infection already, they never make the Lyme disease connection.”
Mr. Honig cautions, “Doctors and science are not infallible, and we must keep an open mind for the truth. Sometimes, it means opening our eyes to a different healing approach, but we must keep looking. Most doctors were never taught about tick-borne infections and don’t have time to research it properly. If it wasn’t taught in medical school, it must be made up, right? Although doctors acknowledge that Lyme exists, they don’t believe it can be so extensive and damaging.
When dealing with any chronic illness, the immune system is compromised, especially from the medication, so it’s important to work with a doctor who will fight and fill at the same time. With so many opportunistic infections and viruses coming to the surface, we need to fight the bad but also replenish the body with the vital nutrients it needs so it can heat more readily.
When life gives you Lyme
Life for Lyme walks patients through what tends to be an intimidating and confusing process.
“Every case is so individual, depending on the immune system and the co-infections that were transmitted, and no two treatment plans are the same. We always recommend that patients undergo extensive testing to form a complete picture of the issues of concern. It’s important to get the tests done at a reputable lab. We now recommend different labs for different tests based on extensive research and experience. Once the results come in, we refer them to a doctor who can make a diagnosis and recommend a treatment plan if applicable,” Mr. Honig explains.
“An often-overlooked part of the healing journey is post-infection. While the person is declared Lyme-free, there may still be a host of viruses and parasites present. There’s still a lot of work to be done before the person fully recovers. Also, some symptoms linger due to the autoimmune issues triggered by the pathogens’ attack.
“V’nishmartem me’od l’nafshoseichem,” Mr. Honig concludes. “We can’t be complacent. If you or your loved one has been ill for a while, you need to turn over stone after stone until you find the root cause.”