Life with Lyme How a Mother’s Intuition Helped Heal Her Child

AUGUST 25, 2022

THE BALTIMORE JEWISH HOME

Life with Lyme

How a Mother’s Intuition Helped Heal Her Child

As told to ChAiA FrishmAn

All names have been changed to protect the privacy of the family.

It was the summer of 2021. My family planned on spending July and August in the Catskill Mountains. This was my first time. I called a friend to ask what I needed to pack and what I needed to know. She was kind enough to go over her packing list with me, and as we finished schmoozing, she mentioned in passing that at the end of each summer, she always takes her entire family to the doctor to do bloodwork. Although she was careful about checking her kids each day, she still wanted to make sure that none of her kids still had any undetected tick bites lingering on their skin.

Now that I was aware of how populous ticks were in that area, I adopted her vigilance and was very careful to check my kids every night before they went to sleep to see if there were any signs of tick bites.

One night, early in July, as I was putting my daughter Peshy to sleep, I noticed a tick on her face, right below her hairline. I carefully took it off and put it aside. As common sense dictated, I calculated that it could not have been there for too long since it was on her face. I figured that I surely would have noticed it earlier, and if not me, someone else definitely would have seen it.

The next morning, I called Dr. Bleich’s office and asked for guidance. I was told that either I could test the tick to see what, if any, diseases it might be carrying, or wait and see if Peshy developed any symptoms such as fever, fatigue, headache, mildly stiff neck, aching or the classic bullseye rash. She never developed a rash, and she never developed a fever. But I had in my mind that we would test the whole family anyway when the summer was over.

When we came back home, life returned to its frenetic pace that punctuates returning home, starting the school year, and, of course, yom tov. On top of that, we celebrated a family simcha. To say we were busy was an understatement. For Peshy, the stress of the new year included beginning middle school. Compounded by Rosh Hashana coming before Labor Day, we were getting back by the skin of our teeth.

When Peshy started to act out and complain of feeling anxious, it was very easy to attribute it to all the changes that were happening very, very quickly. When her teachers called me to introduce themselves, I told them that my daughter was nervous about starting school, and they assured me that they would help in any way possible to ease the transition.

Shortly before the appointment for bloodwork, Peshy began to complain of ankle pain. My internal antenna shot up. This was a major red flag for me, knowing that she had a tick bite. I was nervous of the condition I had read about known as Lyme arthritis, in which Lyme bacteria enters the joint fluid, and the joint becomes inflamed. Lyme bacteria is what is the most commonly caused infectant from tick bites. I felt grateful that we had our upcoming appointment on the near future. I was prepared to talk to Dr. Bleich about it and have her bloodwork done.

On OctOber 5, Dr. Bleich examined Peshy. He felt that her joint pain was more related to her flat-footedness and to the fact that she’s a very active child. He suggested I make sure all her shoes, including her Shabbos ones, had good support. In the meantime, we would wait and see what the Western Blot test, the blood test for Lyme, showed. After the appointment, I promptly took Peshy to the store and picked up a brand new pair of shoes for her.

A few days later, I received a call from the doctor’s office with the results of the bloodwork. I breathed a sigh of relief when the nurse told me it was negative. What I didn’t know then was that, according to the CDC, in order for a Western Blot to be positive for Lyme, the patient needs to have a minimum of 2 positive bands of IGM,

which show a recent infection or 5 positive bands of IGG, which show an older infection, to be considered positive for Lyme. In actuality, Peshy had 2 bands of IGG present on the western blot, but according to the CDC, this is not enough and so the test was interpreted as negative.

We continued into the winter without much relief to Peshy’s leg pain. Her anxiety continued to be a problem and there were more and more episodes of her becoming “uncomfortable,” Peshy’s code word to describe when she was feeling anxious.

Since Peshy was beginning middle school, this was the first time she was eligible to receive school lunch. My daughter, always a fantastic and eclectic eater, began complaining that the foods offered in school were making her nauseous. While this was frustrating for me, because now I was making her alternate lunches, I attributed it to the fact that she was not used to the options they offered. This spilled over into her complaining about the foods I was offering at home. She was starting to complain about the foods that she had always enjoyed. She would complain that her usually favorite foods were making her so nauseous that she had to leave the room. Nausea progressed to stomachaches, and she began to complain often that her stomach was bothering her. I found her spending more time in the bathroom than ever before.

Around November time, at Parent Teacher Conferences, in speaking with the teachers, I brought up the topic of my Peshy’s anxiety, and I asked the teachers how she was doing in school. They mentioned that there were a few times in school where she became very emotional and seemed inconsolable. This was out of character for her, and so I asked them if there was a social worker who could see her in school on a regular basis. The teacher referred her to the social work department, and we were able to arrange for a social worker to see Peshy weekly and work with her on recognizing and coping with her emotions.

After a few weeks, the social worker called to tell me she was making great progress in school. I was surprised – this was not what I was seeing at home. Peshy would come from school, and within minutes she would transform from happy to devastated and she would begin crying hysterically about something from much earlier in the day as if it just happened. This started to happen as often as four times a week!

My previously confident and calm child was inexplicably transforming. She no longer had the capacity to balance or regulate her conflicting emotions, and the end result would be hysterical crying. I had no indication of which way she was going and could not prepare myself when her emotions were so erratic.

In February 2022, while catching up with my friend Shulamis over coffee, she confided in me that her daughter Sarale was just recently diagnosed with Bartonella, a common co-infection of Lyme Disease. She told me how her daughter was bitten by a tick in camp four years earlier, and her doctor did not run the proper testing on the tick or her daughter. Shulamis described how for four years she watched as Sarale progressively deteriorated.

Sarale’s symptoms fell into three categories, which included neurological, psychological, and gastro-intestinal. She described how hard it was to find a doctor to run the tests to evaluate if her symptoms were related to the bite throughout the four years. She ran from doctor to doctor, but they all dismissed the symptoms. Fortunately, she finally found a doctor willing to test her for Lyme and the co-infections.

My blood ran cold, and suddenly, a frightening thought popped into my head. What if all the symptoms Peshy was exhibiting were actually linked to the tick bite? It seemed pretty clear to me as we reviewed the timeline from the bite correlating with the list of

symptoms that had been growing slowly but progressively.

This information was very hard to process. I was honestly hoping that it wasn’t true, and as the information sunk in, the realization of how much she regressed from the time of the bite was terrifying Peshy was no longer the same child as she was before the trip to the country. The disease clearly entered her system and in a slow and insidious way did it damage. I felt as though I was racing against the clock. I needed to get moving on this. I started reading everything I could about Lyme and the co-infections from reputable and more importantly experienced medical sources.

Around the same time that this was all unfolding, Peshy started developing facial tics. It began as a simple blinking, then progressed to scrunching her nose, eventually it turned into jerking her neck back. My husband and I noticed this immediately, and it only strengthened our decision to move ahead quickly on the testing.

Throughout my research, I learned about Life for Lyme, a volunteer organization that provides support and guidance to those suffering with Chronic Lyme Disease and co-infections. From my first call with them, the volunteer that I spoke with gave me a lot of time and explained so much. He provided me with resources and a list of all the relevant testing we should be asking for from Dr. Bleich’s office. Next, I reached out to Dr. Bleich. We spoke over the phone and verbalized the concerns I had. I told him that I was coming in for my Peshy’s annual well-visit shortly and I wanted to have all of the tests run – total of approximately 30 different tests. I am not sure that he was in agreement with my assessment, but he did say, “You can never discount a mother’s intuition,” and he ordered the tests.

A few days later, the tests came back, and now that I had greater knowledge on what I was looking for, I asked for a copy of the test results. In bold red letters, two bands were positive. I began shaking. I couldn’t believe it. I felt validated. All the questioning I had since Peshy’s tick bite, the growing list of symptoms, all had a reason. I called Dr. Bleich to discuss the results and felt like my train came to a crashing halt when he said, “It’s not positive.” I didn’t understand. Peshy had a known tick bite. We had a clear timeline of symptoms but according to the CDC, there weren’t enough positive bands and so she didn’t qualify for antibiotics. I didn’t know what to do. Did this mean I was supposed to watch my daughter worsen? What more symptoms did she need to prove to be eligible for treatment? I felt lost and helpless. But I refused to give in. I pleaded my case to Dr. Bleich. I told him I was not walking away without antibiotics. Eventually, he agreed, but I didn’t feel the regimen he proposed was adequate from all of the research I had done. I wanted another opinion. Thank G-d, we were able to find another doctor, Dr. Plier, who was more familiar with newer testing options and treatment protocols for Lyme and the co-infections. He was able to order more specific testing from more sensitive laboratories to get a better picture of what was going on.

Dr. Plier explained to me that once someone has Lyme or any of the co-infections spread throughout the body, the infection is now referred to as chronic. As with any chronic illness, the downstream effects include a disruption of hormones, immune system imbalance and nervous system dysregulation. This can look like thyroid dysfunction, food sensitivities, gastrointestinal issues, neuropsychological disorders, and autoimmune disorders, to name a few.

It is because of the complexity of chronic illness that we needed to create a more holistic and balanced regimen. Peshy began taking two different antibiotics and several different vitamins to help support her immune system and rid her body of the infection. Dr. Plier also included a probiotic to help support her gut while taking the antibiotics. We focused on incorporating specific foods into her diet to help the good bacteria thrive. There are also herbal treatments that have shown positive results in helping to clear the infections, but these often come with strong smells and tastes, and because of her age, Peshy was not ready to tolerate them.

Despite the fact that Peshy continues to remain CDC negative for Lyme, we are seeing tremendous progress with a near resolution of symptoms. She is finishing her third month of this regimen now, and the goal is to wean her off of the antibiotics in the near future and see how she manages.

HOdu l’HasHem kI tOv.

I know this journey is still in progress, and we are still navigating our path with Hashem’s help. My goal is to maintain the progress we have made with keeping her immune system strong and trying to incorporate some mild herbal treatments to help kill off any bacteria that may still be lingering.

I feel it is important to tell Peshy’s story for a few reasons.

Number one is to increase awareness. Lyme disease and the co-infections are on the rise. For anyone who reads this story and the thought pops into your mind of a friend, cousin or neighbor who may be struggling to find answers to unexplained symptoms, this is for you. You can reach out and be a light to point someone else in the right direction.

Number two: For those of you reading this and may be trying to find answers for yourself, your spouse or your children, understand that Lyme Disease and the co-infections are complex. It is something that your primary care physician may not be able to manage individually due to its complexity and the amount of time and effort this takes. Doctors are bound by managed care companies and how they are reimbursed and therefore may not be able to dedicate the time to this.

There is new and emerging information on Lyme and the co-infections and how the body responds to chronic infections. There is a holistic component needed as part of a collaborative team. This can include infectious disease specialists, nutritionists, or herbalists. Functional and integrative medicine providers can also be of great help here.

Understand that there are many who are facing this challenge with you. Ask around; connect to another patient, parent or caregiver of some -

one who is going through this. We are out there. There is tremendous benefit in speaking with others who can help you along the way. You are not alone.

Number three: To the medical professionals: Lyme and the co-infections is a growing concern. It is something that in the past may have been more suited for specialists. It is unfortunately knocking down everyone’s door, and it is becoming more common on a primary care level. Educate yourselves on the emerging research and the testing options. Test early for Lyme and the co-infections, and if you feel like a patient requires more time than you can realistically give, refer them to someone who has the time and knowledge. Number four: To the parents whose children are returning from camp: if your child spent time in an area that was common for ticks, test them for evidence of Lyme disease and the co-infections when they return.

My previously They should be tested, not right away, but approximately 4-6 weeks after confident and calm they return; earlier may not show results. Be on the lookout for changes child was inexplicably in your child or symptoms that don’t add up. transforming. Number five: To the owners of sleepaway camps and bungalow colonies: Spray your properties. Unfortunately, sometimes camps and bungalow colonies are the most common place of getting bit by a tick. For all those children who never saw a tick bite, do it for them. Editor’s Note: This is one person’s experience with Lyme disease. As always, when it comes to medical concerns, please discuss your concerns with your or your child’s doctor.

A few things I have learned along the way.

In the last seventy years, the amount of trees on the eastern seaboard has doubled. The amount of deer in United States has increased by one hundred fold in the last ninety years. The amount of Americans living in the suburbs has reached 53% of the population. Combine all these factors together, and you have more people interacting with nature in an area that has an increased probability of harboring deer and subsequently ticks.

Deer are not the only animals to carry ticks. Dogs, cats, and woodchucks are examples of other animals that carry ticks. The list goes on.

Ticks don’t always carry Lyme. Sometimes they carry Bartonella; sometimes they carry Babesia, Mycoplasma, Ricketsial Diseases, and Powassan Virus, to just name a few. Be sure to look up all of them if you still have no resolution to your concern. Sometimes they carry a few at a time. These are referred to as the co-infections. Whenever possible, it’s best to test the tick at a reputable lab to make sure the tick is not carrying anything. Whenever someone is infected with more than one of the above mentioned, treatment becomes more complex and must account for the different infections involved.

Ticks vary in size. Sometimes, you may not even see the tick. Just because you didn’t see a bite, it doesn’t mean much if your symptoms line up with Lyme and the co-infections. If you are concerned, get tested.

Contrary to what many believe, ticks do not need to be attached for 12 hours to transfer these infections. There have been studies showing that certain infections can be transferred in 15 minutes. Some ticks carry diseases in their saliva. Common sense would dictate that if it’s harbored there, it is transferred as soon as the tick attaches itself to its target. The longer it is attached, the greater the likelihood of transmission, but it can happen as soon as the tick bites.

It is easy to miss the first signs of Lyme disease. The severity of symptoms vary, and if they are too mild, they can be missed entirely. While most people are waiting for a classic bullseye rash, the reality is that up to 60 percent of those bit do not develop the rash, and the percentage is even greater in kids. Anyone who has a known tick bite should get tested approximately 4-6 weeks later. Lyme disease is called “The Great Imitator” because it can literally mimic anything – physical, neurological, emotional, psychiatric, such as anxiety, panic attacks, OCD, Bell’s palsy, back or joint pain, cardiac issues, hearing or vision issues, to name a few.

Currently, the gold standard for testing among mainstream practitioners is the Western Blot, however, there are shortcomings. Some labs will only report on the bands that the CDC is looking for. In my daughter’s case, the first lab came with only two positive bands, but later testing from a more sensitive lab showed a few more questionable bands which, had they been included in the first tally of the required 5 bands, may have been the tipping point for her to receive antibiotics from the very first appointment we had.

If you or your child already have any form of chronic illness or struggles with any of the following effects of chronic illness: thyroid dysfunction, food sensitivities, gastrointestinal issues, neuropsychological disorders, or autoimmune disorders, talk to your provider, and when appropriate, begin antibiotics for a 30-day course. This will provide a better chance of eradicating any bacteria from the body before it becomes chronic.

The best resource we and many of our friends with loved ones infected with Lyme Disease found was chaiaforlyme.org

To contact Life for Lyme, use the following link: https://www.chaiforlyme. org/