Today, we have Adina Bercowicz and she is the founder of LymeTV, a nonprofit organization focused on educating the global community on Lyme disease and other tick-borne diseases. They focus on prevention and early detection awareness through film and video documentaries. Adina was inspired to create LymeTV after going through her journey with late-stage neurological Lyme disease and realizing the lack of information out there and tick-borne diseases. Her dedication to raising awareness spurred the creation of an organization focused on creating film content educating the world on Lyme diseases.
To learn more about LymeTV.org visit, lymetv.org.
Adina’s Journey with Neurological Lyme
Mimi: Adina, thank you so much for coming on today. I’m so excited to hear about your journey and I’m actually excited that we just connected the dots. So we’ve actually met before up at the ILADS Convention last year in Boston before lockdown. So thank you so much for coming on.
Adina: Thank you for inviting me. I’m happy to be here.
Mimi: Yeah. So let’s start out with your Lyme journey, your personal story.
Adina: Sure. Like many other people who have debilitating Lyme disease, I was diagnosed late stage. I actually got bitten by a tick or at least two ticks in Miami, Florida. That’s where I’m from. I am now in Portland, Maine, but I’m just coming up to my fourth year being in Portland. So I’m from Miami originally. I was born and raised there and there are ticks in Miami and in Florida, and people don’t really think about that in the tropical areas. So it started about February of 2013. I started feeling very fatigued. My son was just two-months-old at the time and I was trying to take him for a walk that would just be around a large golf course near our condo. And I couldn’t make the walk. It was only a four-mile walk, but I couldn’t even get from one bench to he other. I was quite fatigued and that was the very first time that I felt like something is wrong with my body because this is not typical. I used to be very active and kayak and spin class and mixed martial arts for staying in shape. And I loved being active.
So over time I started to have other things decline and most notably my cognitive ability was declining and I would have time distortion issues and memory issues. And I couldn’t even remember if I brushed my teeth. I would ask my husband 100 times a day, “Did I brush my teeth today?” And he would say yes and you asked me 50 times,” but I would not remember. And then along with that, of course, I also had joint pain and other things happening. So I went first to my rheumatologist and my primary care doctor and I thought that I was having different health issues.
I already did have autoimmune diseases that I knew about and some of them were hereditary, including psoriasis. Psoriatic arthritis runs in my family so I thought I was having an onset of that with the joint pain. So my rheumatologist ran some tests and scans. I’m very grateful for him saying this. He said, “I don’t see the arthritis right now. Could it be an early onset? Sure. But I don’t see it so I can’t give you a definitive diagnosis. Here’s some anti-inflammatories. If they don’t work, stop taking them.” So I took them for a bit. They didn’t help. I stopped taking them.
I figured that it was psoriatic arthritis and maybe it just wasn’t showing up yet. So I kind of brushed it off and left it for quite some time and didn’t go back to him. And my primary care, I had asked if she could do a vitamin panel on me. Because I thought maybe I had a vitamin deficiency and that’s why I was fatigued. And she ran all the panels. Everything was fine. She was like, “Even your vitamin D’s fine and everyone has a vitamin D issue.” So I kind of just chalked it up to a possibility of the psoriatic arthritis.
Fast forward another year and my health was continuing to decline and I didn’t recognize my own car. And I was not able to walk a couple blocks without feeling like I needed an inhaler or something. I had trouble breathing and I was in a lot of pain, a lot of sharp bone pain and nerve pain and it just wouldn’t stop. And self-care was becoming an issue. So I went back to both doctors and the first one I went back to, they were scheduled a day apart. I went back to my primary and I said, “I am heading back to my rheumatologist tomorrow to do some more scans because my joint pain is getting worse, but I wanted to make sure did you run the vitamin B panel? Because my fatigue is getting worse. And I really think there’s a vitamin issue.”
And she said, “Wait a minute, you’re having fatigue and joint pain? What else is going on?” So I kind of went through a list of what was going on because my rheumatologists asked me to keep a diary of my clinical symptoms to kind of see what was happening. And I’m so glad that he told me to do that. So I was starting to go down all of my symptoms and she said, “You sound like my daughter and she has Lyme disease.”
Adina: “So I’m going to run a lupus test, an RA test and a Lyme test because all of those should be ran together because the clinical symptoms overlap.” This is a primary care Miami, not a Lyme literate doctor. I was so lucky to have her. So she ran these tests and I already had an RA test from my rheumatologist so I knew I didn’t have RA. So I was thinking have lupus because I have other autoimmune diseases. So I’m like, “Great, another autoimmune disease.” And I was preparing myself for that diagnosis. And she called me about a week later and said, “Your lupus panel was fine, but you do have some Lyme titers.” And I said, “Whoa. Well, great because everything I read online says 30 days of antibiotics and I should be able to be fine.” I had never heard of Lyme disease before she said she was going to run a Lyme test. And she said, “Oh no, honey, my daughter’s been battling this for four years and you have a road ahead of you.” And I was just like, “No, that’s impossible. It’s 30 days. I’m going to take it. I’m going to get better-“
Mimi: Did she the antibiotics for the 30 days?
Adina: She gave me antibiotics for 30 days and refilled it a couple more times while I was finding a Lyme literate doctor. Now she was very knowledgeable and I attribute her to saving my life. I’ll come back to that in a moment. But she did put me on antibiotics on Doxycycline until I was able to find somebody who was more familiar with treating tick-borne disease patients. So I went on a search for one and it’s not many in Florida. But what she did do because of my cognitive decline and the migraine headaches that I was having, she sent me to a neurologist first and neurology ran a bunch of tests, including a spinal tap.
And so my spinal tap was positive for the Lyme bacteria. The titers were twice as high as it needed to be to trigger a positive test for the baseline. So we knew that I had neurological Lyme and I had a diagnosis of Lyme encephalitis. The neurologist said she knew nothing about Lyme disease. There was only a paragraph about it in the medical books when she was in medical school. She had no idea how to treat it and she offered me medication to treat my migraines, but I’m not going to treat the infection in your brain. So I feel like because of that, I have the damage caused to my body because I wasn’t treated early so-
Mimi: It’s like your carpenter ants. You go in there and it’s like you can get rid of the carpenter ants, but they’ve done the damage.
Adina: Exactly. Right. So I ended up finding a Lyme literate doctor who to be honest was not sending me to the specialist that I needed for the secondary diseases and things they did not test me for other tick-borne diseases except for ehrlichia, which I was also positive. Ehrlichia I feel like I got rid of fast on the doxy was treated kind of easily because other continuous tests after that at some point were all negative. And let me also say that during this time while I was on the antibiotics, I was getting other Western blot tests. And while they all had of course titers and positive bands, they weren’t CDC positive. And we know the issue with the test.
But when I was about to start IV Rocephin for my neurological Lyme disease at some point when I got to that point, I sought a second opinion from a neurologist in New Jersey. I flew to New Jersey. He was on a Lyme board somewhere, but he didn’t treat exclusively Lyme patients, but he did see some. So I went to see him with all my medical files to ensure that Rocephin was the treatment path that I should be seeking. And he said it was, but he did tell me that I needed to get off of the antibiotics for at least two to three weeks in order for the blood test to show accurate because the antibiotics can suppress the antibodies.
And when I did that, after knowing that I had a positive spinal and I was very sick. On my 14th Western blot, I had a full CDC positive only after I got off the antibiotic. So it’s just interesting to note that that obviously the tests are not very sensitive at the moment or they’re not very good. We know that they’re not-
Mimi: Totally accurate, but even if they are, mine were positive and it doesn’t matter. It doesn’t do anything. It’s not like all of a sudden everything was covered. And my world changed because I had seven positives on the CDC panel. Nothing was still covered. So it really it doesn’t even matter when it does come up positive. You moved from Florida up to Maine. You’re in Maine now. Where are you in your process now of healing?
Adina: So it wasn’t until I moved to New England that I actually got the proper care that I needed. So I did get a PICC line put in in Miami in October of 2016. This was three and a half years after I started feeling sick one year after I got my Lyme diagnosis and positive spinal. So I was on oral meds during that time and my Lyme doctor through a bunch of herbals and Samento, Banderol, all that stuff at me. I was not getting better. Not at all. I was consistently declining because the oral meds weren’t crossing the blood-brain barrier. When you have neurological Lyme disease, just like with Lyme carditis, the recommended treatment is IV Ceftriaxone. So eventually my insurance approved it because when you have a positive spinal tap-
Mimi: Yeah, it’s different story.
Adina: They cannot approve it. So it’s kind of like the golden ticket, but you don’t want a positive spinal, but if you have it, that’s going to kind of guarantee your Lyme treatment. So they approved it. I got a PICC line inserted. I got the Ceftriaxone. I had an allergic reaction. I couldn’t take the drug. My allergist in Miami tried to get me into UM’s allergy immunology department so I could do a desensitizing method in the hospital, but their infectious disease doctor unit said that they don’t deal with Lyme disease and brushed me off. They wouldn’t help me at all at University of Miami.
So fast forward, we moved up to New England and I became a patient of an infectious disease neurologist in New York. And that doctor tested me for a wider range of tick-borne diseases. So it turned out that I still had neurological Lyme because it was untreated. I was declining still. I had no longer ehrlichia, but I did earlier. I had babesia, two strains of bartonella and I also had high titers to Rocky Mountain spotted fever, which comes from a different tick species. So I had to have been bitten twice and never saw a tick on me in Florida, but I was healthy before my pregnancy.
So I also know that I got bit during my pregnancy, although I didn’t see the tick because I was healthy prior and my son tested positive when he was about two and a half years old for the same exact strains and species of my tick-borne disease.
Mimi: So you had it when you were pregnant?
Adina: I had it and it was congenitally-
Mimi: Or you could have had it before and you just weren’t showing the signs yet-
Adina: I was on top of my life game before we-
Mimi: I mean, the pregnancy could have also unleashed it. That could have been the thing that kind of broke the camel’s back.
Adina: I don’t know. I think it had to have been during pregnancy. We used to kayak and stuff like that state parks. We had a planned pregnancy. So two months before we started conceiving, I just graduated cum laude with a triple major in school. Mental capacity was fine. I was active. We were traveling. And even though I had autoimmune, I had autoimmune diseases diagnosed before, they were managed well and they were not debilitating me. There were fine. I felt healthy. It definitely came after the pregnancy and I did have a horrible pregnancy too.
Mimi: Are you better now or are you still on your healing journey?
Adina: I am on my healing journey, although I do not have tick-borne diseases any longer. They are treated. I was on long-term antibiotics. I had a PICC line of Ceftriaxone for 90 days and I was on about eight or nine months of the anti-malarials and other antibiotics to treat the other tick-borne diseases. I feel a lot better. I was having seizures and involuntary muscle spasms and jerks, and I was in really bad shape. I was walking like I had muscular dystrophy. I couldn’t properly stand or balanced myself. I am in a much better place and none of those things are happening, but I have other things.
So I have other diagnoses from the damage of the secondary diseases. So now I have what’s called CIDP, which is chronic inflammatory demyelinating polyneuropathy. It’s a degenerative neuromuscular disorder and it’s caused by your large motor nerves being demyelinated. So it’s an autoimmune disease. There could be many reasons that it starts, it could be idiopathic, autoimmune and possibly from infectious agents. Infectious agents can cause a wide variety of damage in autoimmune diseases. It can trigger these things. It’s nothing just for Lyme disease. We see it with COVID now. Along COVID it triggers other issues. So I have that.
I also have dysautonomia, many people know of POTS. POTS is one category of dysautonomia. I have my clinical symptoms of dysautonomia even when I’m sitting that I don’t have to be standing for it to happen. And I also have small fiber neuropathy and all of these things were diagnosed through extensive diagnostic testing, biopsies, autonomic testing at Brigham and Women’s Hospital in Boston, where I go to the autonomic center there now to treat me. So I am on lifelong, weekly infusions stop the demyelination.
Mimi: What kind of infusions are they?
Adina: IVIG. I was going to the infusion center, but because of the pandemic, I’m now doing them myself at home. So I’m doing sub QIG, which is intramuscular. And I was trained with a nurse via FaceTime. We’re still very much isolating and home. So I’m doing it now at home every week. And I do decline when I’m off of them. And I hope to one day be able to walk from my house to my favorite coffee shop that’s three blocks away without any aid one day. That would be lovely.
Mimi: So its affected your walking?
Adina: It’s not so much affected my walking, but the ability to stand up for a long period of time, because I have tachycardia and I have like abnormal EKGs often, so my heart rhythm is abnormal and my blood pressure gets really high or really low and when it gets low it can make pass out. I get very short of breath. I need an inhaler. I can do things and I can walk. I’m not wheelchair bound, but I’m a part-time wheelchair user. So when I’m doing things around the house like vacuuming, I have to sit down periodically and rest. I can’t change the sheets on the bed by myself. My husband has to do that because I can’t.
Mimi: It’s too much exertion. Yeah.
Adina: It’s an exertion, right.
Mimi: So tell us about how you started LymeTV Like how did that come about?
Adina: So that actually came about at the end of 2017, we incorporated in December 2017, but it was just right before that. One of my specialists in Maine sent me to a primary doctor here that I had never seen just to get some kind of, what are they called? I guess like a patient clinical school counselor that helps people manage all their doctors. I mean, my primary was great. I don’t know why she was sending me there, but I figured, “Okay, maybe she knew better. I just moved to Maine. Let me get somebody that can help” because she said, “You have a lot going on.”
I went to see this guy and he looked at me all of my medical files because I brought them from Florida. There’s no electronic system that I could transfer them. I had all these folders and he dismissed everything that my doctor said and the treatments that I was on for autoimmune diseases that I was being treated for years that run in my family. He said I was over-medicalized. And when he I found out that I had neurological Lyme and I said it was untreated so I’m in the process of waiting now to see this other neurologist. He said, “How do you know it’s untreated?” “Well, because I haven’t had Ceftriaxone and I’m still declining.”
He was arrogant to be honest and he was negligent. He wrote in my medical file that although that the patient has a walker, her gait seems normal. My gait hadn’t been normal for quite some time before then. I actually had a cardiac incident in his office. At the time we didn’t know I had dysautonomia until it was my endocrinologist who sent me to a cardiologist here because I had an incident in his office too. And he was like, “Oh my God, you need to see a cardiologist.” So I went to this primary, didn’t help me. My husband was with me. He didn’t check my blood pressure. He didn’t check my pulse. So I was having shortness of breath, like an asthma attack. And he wrote in my medical file that her breath in quotes. “Her breathlessness keeps interrupting me and then it seems to disappear out of nowhere” like I was making it up.
And I was like, “It takes about an hour for those autonomic dysfunction and episodes to calm down, sometimes longer.” So anyways, he was very biased and negligent throughout the appointment and did my medical file with what he was writing. So of course he dismissed me. He would not send me to a cardiologist. He said that he was being the gatekeeper for me not to get harmed from other clinicians. So because of that, obviously that’s why I requested my medical files. I wanted to see what he wrote in it. I took him to the Maine Medical State Review Board because of what he put in my file and his lack of helping or helping through a cardiac emergency in his office. And he got disciplined. He wasn’t put on probation, but a letter was put in his file for 10 years.
If he gets another complaint, maybe he will get probation or lose his license depending on the severity. He didn’t cause me harm. So that’s one of the reasons I think that they just put a letter, but they did state that his words in my medical file were dangerous and he should never be assessing a patient like that basically. So I got upset at the scenario and I was like, “I’m going to do something about it.” And besides taking him to the medical review board, I decided that I wanted to create an organization that put the divergent amount of scientific information in one place for patients and clinicians, because there’s not enough science for Lyme disease.
We do lack funding. We lack research big time, but the science that is out there is relevant and robust, but it does take a lot of digging to read through the NEI, to read the studies to make sure that the conclusions are important. Not all conclusions of a study means something or points something. And obviously popular media often distorts the conclusion of a study. They misinterpret it and then people make health decisions based on that.
So my husband has a PhD in historic epidemiology. My background is in nonprofit leadership and in public health as well. And so I decided that’s what I was going to do. I just wanted a place where all the accurate scientific information is there, going to debunk misconceptions and we’re going to have it where patients can have as a resource to take things to their physicians.
Mimi: Great. And so tell us more about it. So what have you done with it over the past three or four years?
Adina: Yeah. So in just over three years, we’ve actually been making large strides. We are a very young and small organization. We’re all volunteer. We have a board of six, a working board of six, but our team at the moment is a volunteer team total of 24. Not everybody works all the time. Some volunteers are events only. And of course we had no events this past year because of the pandemic, but we still are working with our community partners to do things remotely for them.
Since we’ve incorporated, we have created several PSA commercials for tick bite prevention information. They are only online at the moment, but we’re working on getting them in the broadcast network. And we have started a tick talk series that’s also only online. We have significant footage that we have filmed, four more episodes. It’s just a time constraint and getting everything edited in time when we’re working on other things. So more tick talks will be coming out this year that we’re filming-
Mimi: And you can find those where? On YouTube or on your website?
Adina: YouTube and I think some of them are on Facebook, but we are going to try to migrate them over for what we can do onto Instagram. But I know we have a 10-minute limit for IGTV and some of them run a little over like 12 minutes. We try to keep them around 10 minutes. So we also have our school program. So we have a tick health education program and we educate kids in school because first of all, the way I look at it is prevention is the most important aspect. We can have additional funding, which we need and we need better tests absolutely. We need to differentiate when a patient has early Lyme or late stage Lyme, or if it can possibly at some point differentiate the different strain of borrelia they have. Because some strains might be tolerant to some medications or more persistent, whatever the case is.
So we do need tests that are better and more accurate. That is very important. We also need better treatments for people who have persistent symptoms, because we know 20% of early treated patients have persistent clinical symptoms. Why? A variety of reasons. You know what? Maybe some of those patients, it’s very possible that some of those patients don’t have Lyme disease anymore, but have damage because of it and their doctors are attributing their clinical symptoms to the active infection, which they may not have anymore because-
Mimi: Or it could be parasites or mold or whatever else causing the problems.
Adina: It could be something else, but people are remaining sick and that’s a problem. So our focus, our mission is on the prevention of dangerous tick-borne diseases. So I just want to quickly talk about prevention and misconceptions because that’s what I do. My job is to make people fear ticks. And there’s a lot of misconceptions about ticks and tick diseases. One I want to talk about quickly are rashes. Obviously, we know you can have infection without having an EM rash. But we know now that rashes are strained-dependent and some strains of borrelia cause the rashes and some don’t and they can be regional.
So while the CDC states that 70 to 80% of people present with a rash. In Maine, it’s under 50% based on the 2020 legislative report. Every year, it changes a little bit, but it’s always under 50% present with a rash. So that’s important to know that you could not have a rash and be infected with Lyme disease. Clinicians need to know that as well. Removing a tick, you definitely don’t want to squeeze the tick or pull it off. You don’t want to burn it. You don’t want to put oil on it. You need fine tip tweezers to remove the tick at the head, because it’ll regurgitate gut bacteria into your body increasing your risk. You want to always save the tick for testing. You never want to discard a tick.
And natural ticks sprays actually don’t work against repelling ticks because ticks don’t have smell receptors like mosquitoes. So mosquitoes can be repelled by citronella and different things like that, but ticks need an EPA approved tick repellent. While there are many people who are DEET-aversed, it’s actually a misconception that DEET is dangerous. It’s been used for over 60 years and only 14 cases have ever been reported to the EPA for possible DEET toxicity and DEET was just a hypothesis in those cases, because the seizure activity could have happened from other reasons. Four of those people died and an additional person tries to kill themselves with it. But it’s because you can’t get DEET in your mouth. It is a chemical.
If you’re spraying it on your skin and safe, and if you’re ingesting it, of course it’s a chemical and it can cause an issue. So if people are still DEET-aversed and don’t want to use it, please use another EPA approved tick repellent. You can use Picaridin. You can use IR3535, but it has to be an EPA approved tick repellent for it to be effective. And the ingredient, active ingredient has to be at 20% or higher. Anything under that is just effective against mosquitoes.
Please protect your property with tick tubes and spray your clothes with Permethrin. And that’s all I got to say is take care of yourself. Your health is the most important thing. Never be complacent about ticks. Ticks are everywhere. You don’t need deer anywhere around. They’re going to be where rodents are.
Mimi: Bunnies too? Rabbits?
Adina: Yep. Birds. People have bird feeders on their property, feeding birds to bringing ticks to their property are attracting ticks. Ticks are in urban areas and parks and playgrounds and school campuses. And this is why a wider amount of the population needs to know about the dangerous of ticks and the government, because it’s an epidemic in this nation, the government really should be putting funding towards tick health education just like washing your hands or sex ed. This is why we teach kids in school to teach them these skills as a lifelong skill set because it’s important.
Adina: We teach children in schools all about ticks in a very fun curriculum. And our focus is on prevention. We also do community events that are geared to the underserved of our community. So every Lyme Disease Awareness Month except during the pandemic and not this year either, we have our bagels and bug spray events in Portland. We do two every year and we feed the local homeless community. We give them tick collection kits, free EPA approved tick repellent, and we give them tick brochures and information, and we answer questions.
It’s open to anybody, but it’s geared for the homeless and only the homeless get the free bug spray. We’ve partnered with the main VA to do the same thing. We’ve given the homeless vets in Maine free tick repellent and brochures and tick collection kits. We also target our events to Maine’s senior population because although nationwide the five to 14 age group has the highest demographic of Lyme and tick-borne diseases in the US, Maine as an aging state. So our highest demographic group of Lyme disease here’s the 55+group.
So we do have events for the senior community as well. We partner with senior community partners that target their audience for seniors. We also do events for the new Mainer community and because we have a new Mainer community of refugees that come here that may have never heard of ticks or tick diseases before or know that the dangers are here. So we very much target the underrepresented to let them know about the dangers and to give them the tools that they need.
So we have those programs and in our filming programs, we’re also filming a scientifically-based documentary on the emerging science of Lyme disease. And we have interviewed some amazing outstanding scientists who are doing great work on the front of Lyme disease. We interviewed Dr. Brian Fallon at Columbia University and we also interviewed Dr. Pardis Sabeti at MIT Harvard. She’s a computational geneticist and she’s doing work online now partnering with the Bay Area Lyme Foundation. So we’ve had some other interviews as well. That’s an ongoing project.
This year we’re currently fundraising to complete that project. Takes about four years to do a film and we have about two years of footage. So we’re about halfway through. We have done no in-person interviews for the film or filming through the pandemic. Because we do have a production team that is not something that we were doing in-house as far as the documentary goes. We do have a pro bono production team. They’re doing the film pro bono because they believe in the cause, but we still have expenses for the film because we have travel expenses, we have E&O insurance that we need for the film and just other things, audio tech people.
Mimi: That’s great. Now, if you had to learn for your LymeTV, for your different videos, have you had to learn that all on your own or did you already have that experience prior?
Adina: I completely learned. I didn’t even know of Adobe Cloud Suites packaging. I didn’t know anything about video editing. So I did learn that on my own. One of the people with the production company on the film kind of gave me a quickie crash course on the basics. And then anything else that was more complicated, I’ve used YouTube, but my editing is getting better over time than it was in the beginning. So there’s a progression if people see the earlier stuff to the later.
We’re a small nonprofit, we’re just trying to get the word out. We did film a parody music video of 99 Problems But a Tick Ain’t One. That was filmed in the summer of 2019 and it was released in May of 2020 last year. And that was a really fun video that we did. We had the Portland Police Department involved in our project. So I would say that was one of the better editors jobs. Over time as I had more practice it was easier to do.
Mimi: Thank you, Adina. This has been amazing. I’m so in awe of what you’ve done with LymeTV and all the different things that you have going on in the community as well, helping the underserved.