Mother’s Against Lyme: Congenital Lyme Disease

Ticktective Podcast Transcript

 

Isabel Rose, writer, performer, and activist is interviewed by Ticktective host, Dana Parish. Rose is working on a memoir chronicling her lifelong battle against Lyme disease, which she passed on in utero to both of her children. They discuss Isabel’s experience with Lyme disease and its impact on her and her children. Isabel highlights the lack of awareness and understanding of Lyme disease among medical professionals, leading to misdiagnosis and delayed treatment. She also discusses the connection between Lyme disease and other health issues, such as depression, autism, and gender dysphoria. She champions support for congenital Lyme disease and transgender children and their families. She emphasizes the need for improved diagnostic tools, better treatment options, and increased public awareness of Lyme. Isabel also calls for further research into the connection between Lyme disease and negative health outcomes. She is on the executive board of Project Lyme and co-chair of Mothers against Lyme.  Note: This interview has been edited for clarity.

“I was misdiagnosed for a horrifyingly long period of time—as were both my children.”

– Isabel Rose

Dana Parish: Hello, Isabel. It’s so good to see you.

Isabel Rose: Hi, Dana.

Dana Parish: So, we have been very good friends for many, many years. I won’t even say how long and because I know so many things about your background, it’s like I don’t even know where to start because you’ve had such a fascinating life, such a fascinating journey. You’ve written a book, you’ve made a movie, you’re an activist extraordinaire. You shine light where people didn’t know it could exist. Maybe we could start by talking about your own awareness, and how that came to be with Lyme and other tick-borne diseases.

Isabel Rose: My awareness intersects with you, and it actually begins before you diagnosed me with Lyme. It begins in Bridgehampton, NY, in my driveway in my car. I was incredibly depressed, and I was confessing to you that all of my professional dreams seemed to be taking a backseat to this endless round of doctor’s appointments that I was having because my back was always in spasm, my neck was in spasm, my thyroid was off, and my hip—which went on to be replaced twice actually—and I was also devastatingly depressed. I think that I was having suicidal urges and neither of us knew about Lyme disease, but we had that conversation in my car staring at the lawn.

Dana Parish: It was terrible.

Isabel Rose: I had this little child. I was only a mother of one at the time and I think that my eldest child was already having a lot of issues, which I didn’t understand. So, my life was going from doctor’s appointment, doctor’s appointment, doctor’s appointment, physical therapy—constant things. I was dragging her to a thousand different things and all of a sudden, my sense of my performance career, my writing career, every career was (on hold). I mean, I was misdiagnosed for a horrifyingly long period of time—as were both my children ultimately.

Dana Parish: And we should say you went to the best doctors in New York City. This is the thing that I constantly point out because people don’t understand it. They think they live in a great city like New York, LA, San Diego, or Nashville where you have great doctors and famous hospitals. You think you’re going to the best doctors and that you are going to get the right diagnosis, but it’s actually not true.

Isabel Rose: I mean to this moment, the ignorance—I mean I have to say at this point, willful ignorance of a huge majority of the medical world—is distressing, especially at particular centers of excellence that focus on joints or neurological issues, or any sort of psychiatric facilities. They had really best be up to date on the impact of vector-borne diseases on your functioning.

Dana Parish: Let’s just say that you and I have come together and confronted some of these people at a pretty high level and they don’t want to know because the amount of money that people spend fixing their symptoms is so extraordinary. I think people don’t realize joint replacements, lifelong psychiatric drugs, and appointments (are a cash cow).

Isabel Rose: My mother was on the board of the Hospital for Special Surgery in New York City and she was involved in the creation of the Pediatric Rheumatoid Arthritis Center, and she was put on Humira. She was told she had Rheumatoid Arthritis (RA), and of course I was screaming at her for the last six years that she has Bartonella because she had her heart valve replaced. I knew she didn’t have RA and she actually got diagnosed with Bartonella separately—not by me dragging her to a doctor—but on her regular blood test. It just came up positive and she is in a state of shock because this hospital let her down so severely; she just can’t take it in.

Dana Parish: And I think we should say Bartonella is a really common cause of rheumatic diseases including rheumatoid arthritis. Lyme was discovered as the result of an outbreak of Juvenile RA in Lyme Connecticut. I think it was something like 51 kids, and it was a mother—a brilliant mother like you—who put this all together and brought it to doctor-scientists and they found it and named it, and that’s what we now know as Lyme. But it causes all these other problems people don’t know. The thing about your case that astounds me among other things is that you and I sat down together and went through your medical records together. The most chilling aspect was going through them and seeing that you had an infectious disease doctor who noted a positive Lyme test as a false positive and noted that you should be rechecked in three months. He never even told you from what I remember.

“The willful ignorance of a huge majority of the medical world is distressing, especially at particular centers of excellence that focus on joints or neurological issues, or any sort of psychiatric facilities. They had really best be up to date on the impact of vector-borne diseases on your functioning.”

– Isabel Rose

Isabel Rose: It was a CDC positive test for Lyme and he never treated me.

Dana Parish: But he also wrote ‘false positive’ and noted that he would recheck you in three months, not to mention that the results were what they were, and it would come up positive again and he would say it again. These stories are just literally bone chilling.

Isabel Rose: I’m pretty sure that I got Lyme from my mother, but I was bitten by a tick at eight years old and then I had a stiff neck shortly thereafter and threw up and everything. Then I began a life that was challenging—and nobody knew what Lyme was back then. But by the time I was getting pregnant, I had multiple forms of roving arthritis and I was reporting significant brain fog, and floaters in my eyes. I hadn’t yet begun to have the Meniere’s episodes, but I just had many things wrong, plus extreme depression. Nobody ever mentioned Lyme, and I was allowed to carry a child to term—two children to term—and I lost another child in a pregnancy. That’s the most distressing thing. I think that the OB GYN world is so ignorant (about infectious diseases). It’s not just my life that’s been derailed, it is the lives of both my children. And this is very common. 

To backtrack, Dana, you figured out that I had Lyme disease, showed me my records, and I still said to you, “No, it can’t be Lyme.” And I think that that is typical—a kind of denial—because nobody realizes the radical systemic hijack that Lyme is ….and I’m using it the way you use it, by saying “Lyme Plus” (Lyme+) to encompass all the tickborne diseases. It’s a giant hijack.

Dana Parish: I think people can frame it now. The world understands what a common multisystemic chronic infection can do. So, Long Covid, chronic Lyme, the parallels are there. I just remembered we wrote that op-ed together for USA today, and I think we wrote it in March or April 2020. I know it didn’t come out until early May, but we knew as soon as we saw it. This is very, very eerily familiar and we were very concerned early on. 

Isabel Rose: I’m not happy that it took Covid to bring awareness to chronic, lingering post-treatment infections. But I’m glad that people are reconsidering the magnitude, and they haven’t even begun to talk about how Covid may be impacting pregnancy and children.

Dana Parish: They’re barely scratching the surface. I agree. There are some reports and some data, but I think people don’t understand. I’m sure that it’s the same as is the case with Lyme because they didn’t really do anything to stop it or treat it properly or create the right awareness around it. It’s not going to be front page news because it’s so horrifying what these diseases can do, congenitally. What are people going to do? What’s the average person to do? 

We didn’t really explain this, but Lyme is a lot like syphilis. It’s a ‘close cousin’ as we say. And so, all the things that can happen with syphilis can happen with Lyme and do happen to babies. We should dive into that because you really are an expert on this topic.

Isabel Rose: Lots to unpack there. We’re going to start with the fact that I have two children. I was already definitely greatly infected when I carried my first child. She appeared to be doing really, really well though. It was a regular pregnancy, a regular birth, and then she was bitten by a tick when she was four years old. My pediatrician said to me, “If there’s no bullseye rash or symptoms, forget about it.” So, several months later when she began to have her first meltdowns from multi-sensory overload and when she first began to have difficulty in school after being in the 99th percentile on all her early tests, I couldn’t connect it back to that tick bite because I was uneducated.

“I just had many things wrong, plus extreme depression. Nobody ever mentioned Lyme, and I was allowed to carry a child to term—two children to term—and I lost another child in a pregnancy.”

– Isabel Rose

Dana Parish: Only a few strains of Lyme produce a rash. So you just touched on something very important that people need to know. You do not always get a rash when you get Lyme or other tick-borne diseases.

Isabel Rose: Exactly. She then came home; she started telling me that her joints hurt and I thought it was gymnastics or ‘growing pains.’ She was bitten in the first week of November when she was four years old. By the following May, her knee blew up. She was rushed to the hospital and they removed fluid. And I said to the pediatric orthopedist, “Wait! Doesn’t Lyme disease cause knee problems? Could this be Lyme disease?” And he said, with such rigidness, “I’m not a quack. I’m not going to jump to that. I mean we’re going to let science tell us.” And I said, “Well, you wouldn’t want to start her on something right away?” And he said, “Don’t be ridiculous.” I mean he was so obnoxious. I remember it to this day.

Dana Parish: Oh my God.

Isabel Rose: So, she was put in the hospital because her white blood cell count was crazy. The knee looked like a little soccer ball. I mean she was four years old.

Dana Parish: I have a picture of her actually from the hospital from her lying there with that knee. I’ll never forget that.

Isabel Rose: She was screaming, getting the IVs and everything. Then they found that it was Lyme and they gave me two weeks of amoxicillin. We all know what that means. That means that her life went south. Because that was never going to be enough to treat a tick bite. The bite happened in November. It was now May. And she has struggled. And I got a text message from her this morning saying to me, “I haven’t gotten my period in seven months.” She’s 22. Do you think I need to check again? And she’s had constant ovarian cysts, perverse terrible problems there and many other problems. By the way, she is having hip surgery in January.

Dana Parish: No! Same as your hip replacement?

Isabel Rose: A little bit different. And she’s had her own OCD and neuropsychiatric issues that are very well managed now, but they have been extraordinary in what it’s meant for us. The fact that she stayed in school is amazing to me, and I know women who are really dealing with a lot more. So, I’m not saying things like, “Oh, mine has been the most horrible situation.” At the same time, I then had a second child. I had been bitten quite a few more times by ticks, so I was way more infected. And in this pregnancy, I remember I failed my stress test and my gynecologist said, “This makes no sense. You’re in extraordinary shape. You’re amazing. This doesn’t make sense. Don’t worry about it.”

I then went for my 36-week sonogram—that’s the very last sonogram before you have a baby. I was then told that the fetus had failed to thrive in utero. I haven’t failed anything since eighth grade. I graduated summa cum laude from Yale; the concept of ‘failure’ is not in my vocabulary or on my horizon. What do I do to make my baby grow? So, my child was born with microcephaly. We were told from birth it was going to be a rough road. 

I lost my baby weight really fast, and the road has had its ups and downs. I feel that we are way ahead of the tragedy that could have befallen us. I do know other children born with microcephaly who are quite low functioning. My child is really quite high functioning.

My child is on the autism spectrum, so is my first child, actually. Both my children are on the autism spectrum, both Dana, my firstborn, same. I knew I didn’t want to stigmatize her with it. She came to me to tell me that she had been masking, that she understood that she masks and that’s why a social life has always been so hard for her, why she doesn’t understand social kids. And we can talk a little bit about what it’s like to be with your girlfriends who have these swans of daughters and you’re getting this look like you’re a shitty mother. Your daughter is not a swan. People say, “Why isn’t she more polite? Or why isn’t she hanging out with all the other kids at the holiday party or something?” It’s hard to be the parent of a child who’s on the autism spectrum. As the mother, you’re implicated in an uncomfortable way.

“I’m not happy that it took Covid to bring awareness to chronic, lingering post-treatment infections. But I’m glad that people are reconsidering the magnitude, and they haven’t even begun to talk about how Covid may be impacting pregnancy and children.”

– Isabel Rose

Dana Parish: Yeah, blame the mother. As Dr. Bransfield has said, historically, anytime there’s anything going on with a child—whether they’re bipolar, schizophrenic, anxious, depressed, autistic—it’s always the mother’s fault.

Isabel Rose: Yes. I mean the only way a mother maybe should be blamed is that they pass it along congenitally. And that is a terrible guilt to feel, but something that unless you’re informed, you have no control over. So, it’s complicated. 

Dana Parish: Just so people understand, you’re saying that if you knew, if you had awareness that you had Lyme other tick-borne diseases, you had treated them, the birth outcomes could have been better is what you’re saying?

Isabel Rose: I think the significant thing that people need to understand is that if you treat (tick-borne infections) during pregnancy, the birth outcomes may be better.

Dana Parish: What are cases where they weren’t? I’m curious because you’re educating me here, too. There’s a general mantra about treating Lyme when you’re pregnant. I don’t think it’s even controversial. If you’re pregnant and you get Lyme, you definitely need to treat it to avoid worse fetal outcomes, potentially bad fetal outcomes. But do you know moms who have treated and still had a bad outcome?

Isabel Rose: I know many mothers who’ve treated themselves fully throughout their entire pregnancy and their children still have the whole Lyme package. And I’m sorry to tell you this, I hate being the bearer of bad news, but there is a very strong connection between infection in the mother and autism in the baby.

Dana Parish: We wrote about this in our book, Chronic, because we interviewed a microbiologist, Dr. Amy Proal, about this. If you are somebody who is highly knowledgeable about chronic infections and stealth pathogens, it is not as controversial as the general public would probably imagine.

Isabel Rose: There’s another thing—which again—it is controversial. What I’ve observed—and in my case one of my children is transgender—and then puberty actually sets in. Now, I want to say that there is a subset of either children born to infected parents, or children who get their very own unique tick bite. And it is just a subset of people who experience gender identity alterations. Sometimes sexual orientation changes.  Dr. Bob Bransfield is much more fluent on this than I am. His deep data shows that it can cause sexual compulsions. It can cause what we classify as ‘perversion.’ And what’s so upsetting is that the people suffering from this are classified as criminals, but they’re ill and they need treatment. That’s heartbreaking to me and especially the hatred against trans people right now. And I’m not saying that they need to be cured. They should take antibiotics and be cured, but it is causing it. Let’s have compassion around it and let’s also begin to understand if there is, in fact (because mine’s a guess), a subset that could be a representation of the general subset of the population. I’m just supporting what I observe in my community. I run these support groups, so I have a pretty constant stream of parents telling me what’s going on.

“I hate being the bearer of bad news, but there is a very strong connection between infection in the mother and autism in the baby.”

– Isabel Rose

Dana Parish: I saw it in your case. And I also know two other people very well who had kids who got a tick bite at some point at 12, 13, 14 years old and then changed gender identities. They then treated the infection when the family figured out what was going on and they went back to their original (gender identity). I’ve seen it with my own eyes.

Isabel Rose: I’m scared. I mean, I’m simply speaking to you and saying that it’s just something I’ve observed and in our own family this is happening. I don’t want to pathologize gender or give people—even a parent—false hope (and have them thinking) “I can treat my child for this.” The thing is that if the gender identity change is an indication of infection, it’s important to treat the infection. Not so much to help to cure the gender problem, but because the other manifestations of the infection are so serious and threatening.”

Dana Parish: Absolutely. And they can cause heart failure and you can die. That happens. I was reading about a case recently of a young boy who got a tick bite. Nobody took him seriously when he was having chest pain and he died from Lyme carditis. So, these things happen. Is there a way to prove an infection? Can you test cord blood? People are going to watch and listen to this and go, “How do you know that that’s why your child has X, Y and Z, or why you had a miscarriage at eight months?” People want to know how we can find out what’s really going on here?

Isabel Rose: I want to answer that. I want to answer how people can find out. But I want to go back to one point because it’s very important that we cover. There is literally an epidemic size problem of depression in young adults, in children in the population. But I mean especially in our kids and especially there is a problem with suicide. That number is going off the charts and I don’t want to discount the connection between infection and suicide in our kids and teens and young adults. For instance, I think that at college university health centers, the fact that they’re not educated about what Lyme can do (is a huge problem). You can have a psychotic break, you can have all sorts of terrifying episodes. And to be dismissed from a health center with a pamphlet on mindfulness, a recommendation for yoga, and to ‘call someone in your network’ is negligent.

Dana Parish: It is. And sometimes Lyme and other infections can present as neuropsychiatric illnesses. I had a psychiatrist recently watch the interview I did with Bob Bransfield who was a top expert in this field of neuropsychiatric illnesses related to infections. I know you know him very well. He’s also published on all of this. He’s also published papers on Lyme and infections and suicide. So, this has long been known in the Lyme world and in the chronic infection world. But I think outside of there, not so much. So, I had a psychiatrist say to me, “Should I always be checking my patients for these diseases?” Why wouldn’t you? I mean you and I both know psychiatrists don’t generally. They say, “Oh, we know about it, we check for it.”  I don’t know anyone really who had unless I had a very acute onset and a swollen knee and sort of the more classically thought of science on Lyme. I don’t know anybody who just went to a psychiatrist, and they were like, “Before we give you X, Y, and Z or make this diagnosis, let’s test you for a bunch of infections.” I’ve never heard that, and I’ve heard about thousands of cases.

“There is literally an epidemic size problem of depression in young adults, in children in the population. But I mean especially in our kids and especially there is a problem with suicide.”

– Isabel Rose

Isabel Rose: I want to now go to the question that you asked me. What can people do? Because it is a partner of where we are right now in this conversation. Our diagnostic tools are not where they need to be. And that to me is the single most important issue facing the population. We do not have enough dependable diagnostic tools available to the general public. And with infants in particular, often the infection doesn’t show up in the cord blood. Occasionally it does. I do have a mother in one of my groups whose child’s cord blood did test positive.

Dana Parish: What was the child’s symptomatology?

Isabel Rose: For babies, you’re looking at low birth weight; you’re looking at cardiac issues; you’re looking at oxygen. Are their fingers blue? Is there rejection? Are there allergies in babies?

Dana Parish: Do they cry a lot? Do they have more trouble sleeping? Is it that kind of stuff?

Isabel Rose: Yes, all of it. That can be an indication. Our mutual friend, Sue Faber knows more about this than I do—I hope she can illuminate this conversation around this—but for some reason, the blood tests often come up negative. My own blood tests came up negative year after year after year, and I was completely infected.

“Our diagnostic tools are not where they need to be. And that to me is the single most important issue facing the population. We do not have enough dependable diagnostic tools available to the general public.”

– Isabel Rose

Dana Parish: There’s a study that showed that traditional Lyme tests conducted at labs like Quest, LabCorp, and a lot of hospitals that use the same technology, miss 70%.

Isabel Rose: That sounds like a low number to me. 

Dana Parish: I know some people would argue it’s 90%. I mean, whatever it is, it’s really high and the tests are really bad. And then if you want to go to a specialty lab that has better tests, you have to pay out of pocket because insurance doesn’t want to pay for those. And then you’re being gaslighted by the infectious diseases community and pediatricians and internal medicine, they don’t really know. And of course, rheumatology is the worst. They don’t even know how to interpret any of the tests. It’s absolutely devastating.

Isabel Rose: Yes. I was left to flounder for 40 years. 40, not four, 40 years. My kids were left floundering. This is another thing that concerns me a lot is that there are many women who don’t realize they have Lyme disease because the symptomatology is not known. It just isn’t known. People don’t understand that their tendonitis is Lyme disease. They don’t understand that their anxiety or the tic in their eyes that makes them blink a lot, they don’t understand that that and their tennis elbow are really good clues (that it might be a chronic infection).

And then they have a child who’s definitely on the spectrum and they don’t understand that. That in and of itself is a clue that they have a family situation going on. I identify it very quickly now because I’m inside of it and I see it in seconds. I can look at whole generations. By the way, I was just thinking about this the other day, a grandfather, very sporty family in Aspen, all athletes, granddad, now Alzheimer’s son has some sort of degenerative spine condition. The daughter is bigender and on the spectrum and has insomnia from childhood. And to this day, I can look at those three generations and tell you that there’s infection through generations, a triple line, and that’s just an example. I see it all the time in different manifestations because I know all the symptoms like you do.

Dana Parish: And neurodegeneration is a very well-known symptom of Lyme, like Alzheimer’s, dementia, Parkinson’s. We’ve known this for generations, and yet there’s almost zero public awareness. It’s huge. And nobody knows. It’s absolutely a global phenomenon. Nobody knows because it’s all been covered up.

“I find myself incredibly overwhelmed by what I know. I was left to flounder for 40 years. 40, not four, 40 years. My kids were left floundering.”

– Isabel Rose

Isabel Rose: I find myself incredibly overwhelmed by what I know. And I often say that people don’t realize the size of the catastrophe. I hear these things all the time, like a mother who is chronically anxious or something like that. The child is fine. They just have crippling stomach pain. And I’ll say, “Has your child been tested for Lyme?” And they’ll just say, “Don’t be ridiculous.” And I’m dismissed. I sometimes wish I didn’t know what I know.

Dana Parish: Yes, I know what you mean. It’s a curse and a blessing at the same time.

Isabel Rose: They’ll just say, “Well, she’s been tested for everything, and they just can’t figure it out.” And I’ll say, “That’s usually when you need the Lyme test.” But then if the Lyme test comes back negative, you are doubly confirmed (negative) as I know.

Dana Parish: Well, that’s the problem. I don’t even tell people to test anymore. I say, “Have you been evaluated?” Because Lyme should be a clinical diagnosis based on signs and symptoms. Testing can confirm. There are other blood tests that you can use, inflammatory markers, things that give clues CD 57, but you need to go to a specialist. You cannot just go to your regular pediatrician or your ID doc at NYU. You cannot do that. That is not going to get these diseases ruled in or out properly. You have to see a specialist. ILADS.org has a good resource list of doctors, a network of doctors all over the world.

Isabel Rose: Project Lyme has a doctor referral list.

Dana Parish: Project Lyme is another great resource. 

Isabel Rose: Then there’s another issue that I think the Lyme community has to solve in itself, which is that people are desperate for some cure because they’re really sick and the sickness shows up in so many different ways. So, it means that there are some practitioners out there who maybe they’re helping some people, but they’re not helping everybody. Or there are some ruthless practitioners out there who shouldn’t be helping anybody, but they take our money. And it gives the Lyme world a difficult reputation, sort of like a public face. And that’s something that I do think about a lot in the absence of clear guidelines of how to treat because there are no guidelines. Well, there are Lyme treatment guidelines and they’re not effective. They’re incorrect. And the IDSA (Infectious Diseases Society of America), these are terrible guidelines.

Isabel Rose: For pregnancy, there are literally no guidelines. But in the absence, it’s a free for all and every case is different and every body is different. So, there’s a narrative that’s leaking out, potentially damaging to a community that in its essence is just trying to get better.

Dana Parish: Yes, we’re seeing this in Long Covid now. They’re going down a lot of the same roads. Western medicine has nothing to offer me or very little to offer me. I’m going to do Chinese medicine. I’m going to try hyperbaric oxygen. I’m going to try LDN, I’m going to an integrative doctor. I support that. All that stuff. And I totally agree with you. Part of the reason that this is happening is because we don’t have good treatments. So, then come up with better treatments! The mainstream really wants to help people instead of complaining about the fact that we go down these other roads. Help us get better, then we’re all for it! Chemotherapy kills a lot of people. Tylenol kills a lot of people. Nobody’s screaming on the front pages about that, but God forbid a Lyme patient try something a little bit outside of the norm. It’s like, “Oh my God, that doctor is crazy. That patient is crazy.” Well, guess what? Sometimes they also get better doing these alternative things. I did Chinese medicine; I did western medicine; I got better. They synergized. I did great. I did both. I was in heart failure. I came out of it. You’re going to argue with me about it? That’s what happened. You have a problem with it? That’s your problem.

Isabel Rose: I think that we are in the early days, sadly. For those suffering over many generations, it seems like how could this be early days? 

Dana Parish: But there’s not a really great effort, there’s not a lot of money from the NIH to fund Lyme. They’re really looking to push another vaccine. And there’s a lot of scandal around the lack of treatment, the lack of funding.

Isabel Rose: ILADS actually published that no further investigation into congenital Lyme was recommended. Really, that’s not even a scientific frame of mind. Questioning and investigation is at the heart of science.

Dana Parish: Of course. Well, the CDC even now acknowledges that congenital Lyme exists and is a problem. For a long time they wouldn’t admit it publicly because what they’d say in private is, “If we acknowledge it, we have to do something about it and we don’t have the means to do anything about it.” Well, you do actually. You could just educate people. You don’t have to do much more than that. You could just tell them about it and give them the opportunity to treat if their doctor and themselves together decide this could help.

Isabel Rose: It could help. And the thing that disturbs me and makes it hard for me to sleep some nights is that I can’t say with assurance to the women who come to me for advice, I cannot say to them at this time: “If you treat yourself through pregnancy, your baby will turn out well.” I’m unable to offer that comfort right now, and the only advice I can offer is to make noise and to ask or to call for more research. But this is years down the path. And what happens if you just want to start your family?

Dana Parish: All these women are asymptomatic. Also, another big problem is many, many, many people are asymptomatically infected, but then they have a child that’s highly symptomatic. So, that’s a really enormous issue.

Isabel Rose: I have these support groups and they’re sponsored by Project Lyme. I’m a board member there, but they’re run by me through Mothers Against Lyme, and I’m the co-chair of that group.

“The stress and strain of raising children who are sick, it can’t be overstated how great that stress is. And the toll it takes on the mother, on the parent, on the marriage. Marriages regularly fall apart over this.”

– Isabel Rose

Dana Parish: How can people join these, by the way?

Isabel Rose: Go to Project Lyme and if you scroll down on the page, you’ll see “Join a Mother’s Meetup.” The population of these meetings is varied. I have many women who don’t have Lyme at all, or they don’t think they have Lyme, and they have an adult child with Lyme who’s housebound. Maybe the kid is 36, 20, whatever these women have, their lives have fallen apart from the strain of having an adult child never leaving the house. It’s terrible. The mourning, the cost, all of it. 

Then I have women who have Lyme themselves and children with Lyme. That’s generally my population. One woman wanted to get pregnant. She definitely had just gotten positively diagnosed with Lyme and she didn’t have the money for treatment. And another woman in the group said, “You should really think about whether you want to have the child.”  I didn’t say it. I didn’t have the guts, but the mother-to-be just signed out of the meeting and kind of ran.

Dana Parish: It’s harsh. It’s a harsh reality.

Isabel Rose: It’s really true, Dana, that the stress and strain of raising children who are sick, it can’t be overstated how great that stress is. And the toll it takes on the mother, on the parent, on the marriage. Marriages regularly fall apart over this. It’s not just that people lose their career. You know what the story is: They lose their careers; they lose their marriages; they lose all their friends. Isolation is a terrible problem, and the despair is terrible.

Dana Parish: And people don’t really believe them. They don’t believe it can be this bad. They question you. They question it. Come on. Is it really Lyme? Just tell the kid to put on their shoes and socks and let’s go to lunch. But that’s not how it always works. You don’t get it if this is what you’re saying. It’s very distressing because you have the element of not being believed on top of everything else. If you had a child with diabetes, they believe you, or a child with cancer, they believe you. But somehow when you have Lyme, it’s the diagnosis of disbelief. It pervades everything.

Isabel Rose: And being gaslighted. I have to fight with myself against daily despair and I have to frequently celebrate small victories: a medication that’s working; a symptom that gets relieved—or I have to cultivate that. Otherwise, I don’t know that I could step forward. I wouldn’t get out of bed.

Dana Parish: I understand that. It’s very, very hard. It becomes a family affair. Your parents then are affected, the grandparents. Everybody is affected by this.

“I have to fight with myself against daily despair and I have to frequently celebrate small victories: a medication that’s working; a symptom that gets relieved—or I have to cultivate that.”

– Isabel Rose

Isabel Rose: Medical schools are going to have to start teaching it. It’s going to start there. Symptom awareness is going to be our greatest ally and improved diagnostics and a public awareness campaign so people can keep themselves from getting Lyme and their children from getting Lyme. But in the congenital situation, we really need the diagnostic to step in because like you said, it’s not going to capture someone who’s asymptomatic or who doesn’t understand that their little list of small things (symptoms) or maybe big things—who knows—but they don’t understand. That’s Lyme.

Dana Parish: Yes.

Isabel Rose: They’re like, “No, I have Crohn’s,” or “My thyroid’s off and I’m depressed, but I don’t have Lyme.” And I’m like, “Well, have you been evaluated?” Also, somebody who’s young with RA or something like that. If you say to them, “You should get yourself evaluated,” they don’t want to take the time to stop their life and figure out where to get a Lyme assessment.

Dana Parish: Yes. I have a friend who has RA and has rescued stray cats her whole life, which carry very high levels of Bartonella,  which can cause RA and other rheumatic issues as we talked about before. And I’ve said to her, “You probably want to check this out. You’re on immune suppressants.” She’s always sick because she’s on immune suppressants and now we’re in the era of Covid and she’s even more always sick. And she said, “I don’t want to.” Why not? “Because I just want to feel better and the immune suppressants shut down my symptoms. So, I’m not getting worse. I’m not getting better, but I’m not getting worse.” It’s hard to argue with that because I don’t want her to feel worse either. I want her to feel better too. But it’s also so complicated. I can’t promise her treatments are going to work.

Isabel Rose: It’s why I feel that we are in the early days, and I think that the future will show us a very big connection between infection in general, not just Lyme infection, but infection and negative outcome that isn’t immediately associated with that initial infection. So, if the first manifestation of Covid is a cough and a fever, six months down the line, when you have neuropathy and dizziness, what does it look like in its chronic form?

Dana Parish: That’s a great point. Excellent point.

“I feel that we are in the early days, and I think that the future will show us a very big connection between infection in general, not just Lyme infection, but infection and negative outcome that isn’t immediately associated with that initial infection.”

– Isabel Rose

Isabel Rose: I think that eventually they’ll be making a lot more connections between infections. And I also think, Dana, that I want to see the numbers and all the statistics. Of course these are skewed because of people who don’t identify themselves in this category. But I want to see if there’s correlation between Lyme-endemic states and autism, Lyme-endemic states and reported gender dysphorias. I’m really curious about it. And Lyme-endemic states and suicides. Maybe these statistics will get more attention. I recently saw a statistic, it was from 2015—so old—80% of marriages where there’s an autistic child end in divorce.

Dana Parish: And in the general public it’s like 50%. Right? So that’s significant.

Isabel Rose: It’s significant. And then you think that there’s a very strong connection between Lyme and autism.

Dana Parish: Yes.

Isabel Rose: You want to help the population. You need to go to that source. You need to go to Lyme. And I don’t know what the government gains by their negligence or by ignoring it or hoping it all to solve itself.

Dana Parish: That’s a much bigger topic. My view is that it’s about pharmaceuticals. We did a great amount of research on this for our book, and we wrote about it pretty extensively. Well, you and I both know, the market for immune suppressants is enormous. It’s billions and billions and billions of dollars a year. And we also know that infections cause a lot of the symptoms that these immune suppressants are treating. So, there’s no money in cures. I always say chronic illness is a cash cow. There’s not a lot of money in cures. There was a big analysis that’s been made public and written about in the mainstream about Harvoni, the hepatitis drug, which actually cures certain forms of hepatitis. And they did a big analysis on Wall Street and said, “It’s just not that profitable.” So, I am just making  up these numbers but the gist is—OK—$10 billion in the first year, but then as you cure people, you’re going to get down to $1 billion. It’s just not really worth it. And this is literally how it works. And it’s hard to believe because people want to believe, we as humans want to do good. 

Isabel Rose: Let’s think. What about a hospital? Listen, a hospital makes a lot of money sending you for your MRI and for your PT and for your epidural injection and for your hip replacement and for all these different things. And it becomes this endless cycle. But it’s a for-profit, and hospitals have to pay for themselves. So…

Dana Parish: I know we have to go. Isabelle, thank you so much. You are a gem. You’re brilliant, and you have so much insight and you are helping so many people. So, thank you for today. Thank you for your time and thank you for everything that you do.

Isabel Rose: Dana, thanks for chatting with me.

Dana Parish: Thank you for joining us for this episode of Ticktective, a program of the Bay Area Lyme Foundation. For more information or to get involved, please visit us at bayarealyme.org.