EPISODE TWELVE: DR. STEVEN PHILLIPS AND DANA PARISH
Dr. Steven Phillips and Dana Parish are the co-authors of the new book, "Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again". Dr. Phillips was a renowned infectious disease expert when he became a patient himself, suffering through a devastating bacterial infection that left him nearly paralyzed. Through his own research and self-diagnosis, he was able to find a cure for his illness and used his expertise to help others. Dana Parish is a singer-songwriter whose life took a turn for the worse after being bitten by a tick infected with lyme disease. She suffered long after initial treatment for lyme and finally found support when she became a patient of Dr. Phillips. Dana and Dr. Phillips talk about the sometimes murky diagnosis and treatment process of chronic illnesses borne out of infections and how to advocate for yourself as patient.
lyme, people, patients, doctors, infections, symptoms, phillips, antibiotics, illness, lyme disease, lyme patients, dana, treat, bacteria, life, test, stories, bartonella, studies, disease
Alison Hall, Dr. Steven Phillips, Dana Parish
Alison Hall 00:09
You're listening to between headlines. I'm Alison Hall. For today's episode of between headlines I spoke with Dr. Stephen Phillips, a renowned expert in the field of infectious diseases, and one of his patients singer songwriter, Dana Parrish, Dr. Phillips had been in practice for over a decade when he became a patient himself, severely affected by a complicated illness that was undiagnosed and mistreated for years. It had him nearly paralyzed. Dr. Phillips used his expertise to research and eventually self diagnose and self treat what turned out to be an intense bacterial infection. Upon his recovery, he started using his experience to help others. That's where Dana comes in. Dana was a thriving musician when she became deathly ill for a full year after a tick bite. Dana story may sound familiar to you, she struggled with symptoms of Lyme disease long after her initial diagnosis and treatment period. After a prolonged and challenging period of severe symptoms. She found her way to Dr. Phillips, and a solution for her condition. Together, they wrote a newly released book called chronic, the hidden cause of the auto immune pandemic and how to get better again, they share an experience faced by many people who struggle with chronic conditions. It's an area of health and medicine that is often misunderstood, and can even be controversial for patients. Talking about it and sharing experiences can sometimes be met with questions and disbelief. Lyme disease in particular is a hot topic between some of the medical community and the patients who say they suffer long after their initial treatment. The following conversation is Dr. Phillips and Dana's experience. While their stories don't encapsulate every patient experiences with Lyme disease or chronic illness, they share a roadmap for being your own advocate if you're facing a medical crisis. They share how navigating the system with a murky and poorly understood medical condition is similar to the current climate of COVID long haulers who struggled daily with new emerging symptoms, but don't have an official cure, or even a clear reason for their symptoms. Whether or not you have experienced a bacterial or viral infection in the same way that Dr. Phillips and Dana have. Their conversation offers a window into the challenging realm of diagnosis and treatment for many chronic illnesses. It highlights how open conversation between patients and doctors and collaboration amongst medical professionals and an increased focus on research will help both the medical community and to the patients who are suffering. Now on to my chat with Dr. Phillips and Dana. Dana, I would love to start with you. singer songwriter, you were on the cusp of signing this huge deal with Sony. And then your life took a turn.
Dana Parish 03:29
Yes, that's true. It was extremely devastating. And the timing of it couldn't have been worse. So July 4, weekend of 2014. I was in the middle of negotiating my publishing deal. And I was extremely excited just written a bunch of songs for Celine Dion, and I was about to make a record with Idina Menzel, and it was working with Carly Rae Jepsen, doing all these cool things. And then I got the bite that changed my life and derailed my life. And I went from being healthy and happy to being extremely depressed, anxious, suicidal, full body pain, weakness, extreme cognitive problems, like I couldn't read, and I couldn't write and I couldn't sing and I certainly couldn't show up in recording sessions anymore, and perform and do do anything that I've been doing. So I got the tick bite. I came back after this wedding in New Jersey with a very flu like illness. And a few days later, I saw a bite and a bull's eye, I walked to the ER got a couple weeks of doxycycline which is the standard of care for tick bites, when you have Lyme, and it's a really unfortunate thing that they under treat a lot of people like me, so I wasn't given enough and I went on to have an extreme amount of Full body mind symptoms. So I recovered from the initial flu like illness. And by October, about three months after my bike, all hell broke loose. So I woke up with a swollen breast. And it ended up that I went into heart failure by December. And in between I was living in Manhattan, and I went to see all the quote, top doctors at the top hospitals, I saw about a dozen doctors and from infectious disease to internal medicine, to sports medicine, because I was so weak, every single time I went, I kept saying to them, do you think that my symptoms could still be from that tick bite? Because I was totally fine before that. And every single one of those doctors said no. And the reason that they would say no, if they were pressed hard enough, was because that's what I learned in med school, I went to medical school, you didn't go. And I mean, a lot of patients have a sense that they're not believed. I think that I had like, symptoms that you could see, because I had the breast swelling, I had rashes, I had things that made them take it a little bit more seriously than a lot of other patients that I hear from that feel like, they're just told they're crazy. But you have so many symptoms, when you go through something like this, that you do start to feel like you're going crazy, because every day it's something else. And that's a hallmark of Lyme actually to have these roving, weird symptoms that just don't seem to connect don't seem to make sense unless you really understand what's going on with your body. So all I can tell you is I knew something was wrong. I felt it was intuitively connected to my tick bite, but I just didn't understand how to get the right help.
Alison Hall 06:49
Never heard of Lyme disease before this, or did you know anybody who had a similar experience.
Dana Parish 06:55
In retrospect, I know people who had similar experiences and never figured out why I grew up in New Jersey. So I knew very basically about Lyme, that you would get a tick bite and you will get a bull's eye. And I believed when I read about Lyme, which was that if you catch it early, and you take a couple of weeks of a very simple, generic antibiotic, you get better 100% of the time, that is absolutely wrong and untrue. And you really learned that the hard way. And I also should say that I was in the rare minority that saw the bite in the bullseye, most people don't. So not only are there strains of mine that don't produce a bull's eye rash. There are many, many diseases. And I'm sure Dr. Phillips will elaborate on this that are spread by ticks and other bugs that do not cause a rash. So and ticks also hide, right I was lucky I was bitten on my shoulder. But a lot of people get bitten in their scalp behind their ear behind their knee. It's not like they want you to see them. So they're very crafty. And I was probably also bitten in my sleep. So I want to tell people, you know, if you think that you can only get Lyme when you're hiking. There's also a lot of misinformation about how you get it. Are you a camper, are you a hiker, you don't have to be a I'm not a camper, or a hiker, I'm a city girl, I was at a wedding in New Jersey, I was on the beach for an hour I went to sleep and I came home with a raging case of lime, which also, you know, fast forward 12 doctors lucky enough to land and Dr. Philips office under his care. And lo and behold, that tick bite was driving my entire illness. So by the time I got to him and I was in heart failure, he knew that it was much more. It was much it was probably more complicated than just straightforward Lyme, he did a very good workup and found that I also had another tick borne disease or vector borne disease, other bugs spread it besides ticks, but I had bartonella, which is cat scratch disease. And the thing about cat scratch disease is not only was I not tested for it, not only was it not even thought of by infectious disease, it's considered a very minor self limiting infection by a lot of people in the medical world, but actually, it can be but it can kill you too. People die from it. And it can cause extremely serious illness. And it's highly misunderstood. And it's very unfortunate, because I think a lot of people who think that they got to think that you know, their line has been taken care of but they're still sick don't know that there are these other infections that could be driving their illness that were given to them. And this transmitted in the same bug bite
Alison Hall 09:43
might be a question for you. with Lyme disease, they get treatment. If you catch it early, then you're fine. So many people end up not being fine. I mean, what is the ratio of people who get treatment early and then they're fine compared to others. The chronic nature of this or is it always chronic?
Dr. Steven Phillips 10:03
No, it's not always chronic. But the studies are a bit all over the place. I mean, the the lowest rate of the development of chronic illness that I could find in any study was 5%. And in that study, they treated patients who had no disseminated symptoms, meaning like no body pain, no headache, no flu symptoms are nothing just a rash for less than one week, and they still had a 5% rate of people developing chronic illness. In the more typical manifestations of the illness, there's many studies showing like 20 to 25% of patients develop chronic illness. And then there was some studies that goes on at Johns Hopkins to show 39%. And then there was one at Danbury hospital, which is just up the street from my office. And they showed 61% of patients had the same exact symptoms as their initial line, up to a year later. So there are societies that will say, Oh, it's five to 10%. And they are looking at the most narrow spectrum of the studies and not taking the data in its entirety. I conservatively say 20 to 25%. That's my usual quote, but I know it can be higher. And you know, not all if you're just speaking toward lime, you know about Lyme, not all Lyme patients are critical. Like if somebody comes in with multiple rashes, or, you know, multiple symptoms throughout their body for a long period of time, they're more likely to, you know, to fail treatment with a short course of antibiotics and somebody who has a rash with no symptoms.
Alison Hall 11:26
You explain what Lyme is, and I and further what is an autoimmune disease.
Dr. Steven Phillips 11:33
So, so the strictest definition of Lyme is as caused by a bacteria called re burgdorferi. But Dana had mentioned this other kind of forums of Lyme, other other strains of species. So Lyme is caused by Sparky, which is spiral shaped bacteria, and there are 300 or so strains of actual bacteria that fit within the genetics of Lyme disease, you know, and then there are these cousins to Lyme bacteria that don't fit into the family tree. Exactly, they're far enough away that they're not really considered Lyme disease bacteria, but they cause the exact same thing. Like in the south, they have brilliant loan story. So it's the same genetic, you know, same basic family borrelia, but it's a different species. And it causes a Lyme like illness, basically, for all intensive purposes, the same as Lyme disease, but they don't test positive for Lyme. And they keep finding, you know, more and more species like these, and I can just name them, they're all around the country, and they're all around the world. So when people say, you know, they think they know what Lyme is, and this is what Lyme is, and this is what my test shows. It's such a heterogeneous kind of varied experience for folks that to kind of, you know, go by the stereotypes is, is do a real disservice to the majority of people get sick from these infections. And then there are other infections entirely that overlap with Lyme symptoms like 90%, like bartonella, and part now is considered an emerging infectious disease. So before the 90s, they knew only about two species of bartonella. And one was in the high Andes Mountains in South America. And if you didn't go there, you couldn't possibly get it. And the other was trench fever, which is like the British troops, like one third of them, or something like this got trench fever, and those are the only two they knew about. And then when HIV came along, and people's immune system started getting bad that had AIDS, they started seeing these bacteria and AIDS patients that they thought was just, you know, unusual bacteria that they identified subsequently as bartonella. And then they realized that partner was really ubiquitous organism and the infections are common, it's just is very, very hard to isolate, similar to how it's difficult to isolate. sparkies so and now there's been this explosion of data about bartonella and now they discovered like 45 more species, and at least 10 of them affect humans.
Alison Hall 13:45
Dr. Philips it bartonella is what you have.
Dr. Steven Phillips 13:47
Yeah, so I also got sick while I was sleeping. I'm not a camper. I wouldn't classify myself as a city boy, but I definitely not you know, I'm definitely a farm farm person. And so you have to like get away from the stereotype is actually more important, believe it or not in cities and there is in the country because you know, owning a cat is a big risk factor for bartonella acquisition because the fleas and the cats you know, bite people but, but Dana mentioned cat scratch disease and I want to just also clarify that it's a stereotype it's like the tip of the iceberg when a cat scratches somebody and gives them bartonella it's typically a really different disease presentation when a bug bites them. And you know, I didn't develop cat scratch disease and needed a Dana and we both had bartonella and who knows why I got so incredibly sick and almost died from it. But my story is, is pretty shocking. And the deal is that I had spider bites while I was sleeping, I didn't think anything of it. And within a couple months of those spider bites, I developed a rapidly progressive arthritis all of my body, notably my spine but elsewhere as well. And then I started getting you know, bad flu like symptoms when I call them my malaria symptoms because I had to be on A couple of blankets and I was shaking really severely, everything would get worse than late afternoons into the evening, I would spike fevers every night to over 102. And that losing 50 pounds. I got to the point where I had this ability, and I got even worse from that I couldn't walk. I didn't walk for two years. And it got to the point where I couldn't turn over in bed without assistance. It couldn't sit up. And I basically had everybody care for me. And that's what happened, you know, 24 hours a day. So in the midst of that, obviously, I went to many doctors, I went to 25. And here I am a doctor in this field at that point for 15 years, and this still happened to me. So I went to other doctors that kind of treat Lyme patients like I do. And they were thinking it was Lyme disease. And I was thinking of it, it wasn't and they have been lots of antibiotics that failed. It took a year and a half of orals and nine months of three different IV antibiotics. And they all flared me up and made me kind of worse. And it was really hopeless situation. The rheumatologist wanted to give me umbral and my diagnosis from them were spondylitis, and rheumatoid arthritis. And I kind of figured it all out in the last inning through a chance situation like as fate stepped in, and I took advantage of, of the experience and I I figured it out and saved my own life, and came back to practice in 2013. And what happened was, I got a chance email from an old friend asking me to help her friend's daughter. And they said that she was in the ICU. And was they thought she was gonna die. She was so sick. And could I help her and they thought she had brucellosis. And I looked at brucellosis, and at that point, I couldn't lift my arms against gravity. I remember clawing my way up the keyboard to help some really random stranger. You know, when I looked up the presentation of brucellosis, I was like, Holy moly, I have brucellosis. And it's not a common infection in the United States. And I told my doctor that I've got brucellosis, some clumps sure of it. And he's like, Well, nothing that I've given you is help. So whatever you say, we'll do. And I designed my own treatment regimen. And I started improving, and I got better and better and better. In the meantime, I sent out my blood to this pacella Research Center in Europe that I sent them emails and made friends with them. And they agreed to test my blood from rossella, saying that they have the best presale tests in the world that we don't have in the United States. And as I'm getting better Two months later, I get the results of their very fancy test pack. And like gratulations Dr. Philips, you don't have a trace of Barcella in you. You are, you know, just healthy as a horse, basically, good luck with everything. And I was like, What do I have? You know, so bartonella is the closest cousin to Barcella. And we think that that's the infection that I had this so much that doctors don't know about these kind of slow growing infections. It's, it's really amazing. I mean, patience, and I guess doctors like to portray that, you know, we like to think that doctors know everything, you know, we want to feel confident. But the truth is that they've done these studies and medical sciences only aware of point 00 1% of the microbes on the planet. And you say how can that even be, but that's what they shown through the genetic analysis of the microbes that we know about. And they can predict how many microbes are yet to be discovered.
Alison Hall 18:27
There are so many people, I think there's obviously so many people who have experience with these types of illnesses. I for myself, I'm lucky that I haven't yet had something like this happened to me. But as soon as I started speaking with you guys about Lyme disease, I racked my brain and thought, Okay, I know that person I know that person, I know that person who has been struggling with Lyme, or some version of a tick borne illness or Lyme like symptoms for years. And I've I'm guilty of thinking what I thought there was a cure for that, like, how are they still going through that? I don't understand? Are they not talking to the right doctor? Like what is it about line and line liked his illnesses and like yours, that makes it so difficult to get a diagnosis and treat?
Dr. Steven Phillips 19:19
So I think there's a few a few things in that question that are really noteworthy. Um, so one is just a broad spectrum of the infections that can occur. It's not just one things that are neat and tidy. You know, everything is set up in medicine these days for kind of quick care, you know, patients are in and out in five to 10 minutes. And we don't have the technology to adequately test these patients and say, okay, it's not like, you know, breast cancer has come such a long way. It used to be that all breast cancers were treated with the same chemotherapy, and now they have these precision medicine techniques where they can say you have this type of breast cancer, you have that type of breast cancer, you take this medicine, you take that medicine, and it's not that way with these illnesses. It's very, very aggressive. And, you know, keep in mind my treatment course, I was hunting and pecking for a long time with antibiotics to flare me up and never made me better. And when I finally did get better, and I went back to my rheumatologists and I said, Look at me, you know, look how much Look how normal now and look how bad I was. And how could you not know, I didn't really say an accusing way. But I said, I wanted them to change how they approach other patients with autoimmune disease, you know, I basically have this notion that I think is legitimate, that nature is not fickle, that it finds a pathway, and it keeps repeating it and it recurs, you know, throughout the world. And, you know, there's so many inflammatory pathways that we have in our body, and the term autoimmune disease refers to this inflammatory cascade. So I used the example of a patient who's on my waiting list a long time ago, and then she cancelled and she did make an appointment, and she was on the list because she had a rash called erythema nodosum, which is known to happen with Lyme and bartonella. And it turns out, she had a biopsy of the rash, and was tuberculosis, and she got her diagnosis. And so here you have three really, really different infections that all produce the same net inflammatory pathway, and it's the same exact rash. So I think I think in terms, it's kind of like that as well. So there's a lot a lot of data showing, for example, that infection is behind rheumatoid arthritis. I mean, most people don't know that there are 12 randomized control trials using antibiotics versus placebo. And the antibiotics work for rheumatoid arthritis and placebo doesn't. And it even works when standard therapies like immunosuppressants like methotrexate, and steroids are only doing so much, and the antibiotics take it a step further. So why isn't that being publicized? I think that a lot of the practices of doctors, unfortunately, are dictated by pharmaceutical companies, there's a lot a lot of money and a lifelong annuity of suppressing symptoms. And, you know, medical care has turned into this, like dogmatic way of saying, let's just pay for the rest of the life. And that's what one of my rheumatologist said, I said, Are you interested in, in what I'm interested in? I said, I want it I want this done, you know, with this over and she said, Well, we use rheumatologist don't look at cause we look at effect. And if we can suppress your symptoms for the rest of your life, we consider that a cure. And I said, I hear you, you know, I'm new. I'm trying to be neutral on this, but let's not call it a cure, call it what it is. It's palliative therapy. Okay. And, and, and I don't want you to use a cure word, we got a whole discussion about it. And she's a very nice lady. And I have nothing to say, but nice things about my rheumatologist, I see, they're all great people. But I don't think the field has been on target. Like, I think that, you know, you're gonna have a better outcome if you discover the root cause and treat that rather than just chasing after the symptoms throughout somebody's life.
Alison Hall 22:59
And we left off with you finding Dr. Philips, once you started working with him. I mean, how quickly Did you recover? And at what point did you turn into this? I mean, advocate for yourself, but also, for other patients?
Dana Parish 23:14
That's a good question. It's so the timeline. At the time, it just felt like forever, but I would say that I started treatment with Dr. Phillips around mid January of 2015. My birthday is March 30. And I remember it was the first time I actually went out to dinner since I got sick. And I was able to sort of get a sense of my life coming back. So a couple of months, the first couple of months were very, very, very hard. Um, my treatment, you know, treatment for Lyme disease has a very special gift, which is that you get worse before you get better. Oftentimes, there's a certain kind of reaction called a herxheimer, which is sort of famous notorious for Lyme patients. And sometimes even patients will stop treating early because they get worse than they freak out. They don't really understand what's going on. They think they're allergic to antibiotics or they can't tolerate antibiotics. And really, it's sort of like, the only way out is through for many, many of us including me. So I got much worse by Mark I was out of heart failure, I think by within like six weeks of treating with him. And it was so interesting because my cardiologist was is very collaborative use from Mount Sinai. He's a very mainstream doctor, but he would get on the phone with Dr. Philips and give him updates on my echoes and they he was very interested in hearing about why I was so sick and hearing. Dr. Phillips has insight so I really appreciate that there was some collaboration but very little. So I would say by June July, August, I was starting to not be homebound, though. To the time and by the end of the summer I was able to I was doing a record with Idina Menzel By that time, so I was writing again, I was singing again I was in the studio was working again, I was able to travel to LA, a little bit. And I just, it was a very slow one step forward two steps back kind of a process for a period of time. But I would say that the crux of the horrifying symptoms were Calm down, and you know, within the first four to six months, severe neuro psych symptoms, you know, severe anxiety couldn't be left alone, depression, insomnia, those things that really made the quality of my life unbearable, got a lot better in a couple months, and my heart failure, which made me feel like I couldn't breathe. So I really relate to the lung COVID patients a lot. When I hear that they can't breathe, it's terrifying. And I feel a lot of empathy for them. So I became somebody that couldn't live with what was going on in this landscape, I and I made a promise to somebody that helped me along the way that if I got better that I would champion the cause. And I would do all I could to bring light to this horrific situation to all these disenfranchised patients. So I began writing a column for the Huffington Post. I didn't think anything really would come up, it actually just wrote my story how 11 top New York City doctors missed my case of Lyme disease, basically, and it took off and then I interviewed actually, Dr. Phillips was a big deal to interview him because I was then getting so it's getting a lot of letters from people after I wrote that I relate to the story. Thank you for helping guide me to care. I don't feel alone, I don't feel crazy. I got to interview people like Dr. Phillips, because there was like hardly any information out there that was accurate about these diseases and how chronic they are and how stealth they are and how they hide and how they can have these great periods of latency. Another thing COVID is we're seeing this pattern and COVID people feel okay, I got this mild case, I'm so lucky three months later, all hell breaks loose. This is exactly what happened to me. And this is exactly what happens to many Lyme patients. This was actually published early on this period of latency by Ellen steer. So it's a it became a very clear that I had to keep doing this column because it was really helping people and I got to interview some celebrities and Daryl Hall and Kris Kristofferson had an incredible story that I read him, I read on rolling in the on the cover of Rolling Stone that like he had Lyme induced Alzheimers. And I thought, Oh, my God, I've got to get to him. And I, being music business, we had some mutual friends, and I was able, luckily to get to them. And they talked to me and gave me a really in depth interview about how he started with fibromyalgia, and ended up with Alzheimer's, you know, over a 30 year period. So, you know, you kind of get to see these crazy stories and these crazy patterns, but also these incredible stories of recovery. When people are fortunate, even after decades, sometimes, like in his case, to get better, you know, he has less Alzheimer's. Now, he went back on the road, after he got treated for Lyme after the millionth doctor finally discovered it. And then and then we started doing press together, Dr. Phillips and I, sort of when we met, we were like, you know, probably met in like 4000 old lives, you know, kind of a thing. And we were aligned in this mission to kind of change the paradigm and do all that we could do together. So we started doing some press. And lo and behold, we ended up with a book deal. We were not looking for it necessarily at all. I don't think we haven't even really talked about writing a book together. And it just happened. And it brought us to this moment. Yeah, we've been working on the book for like two and a half years now. It's been amazing.
Alison Hall 29:06
For people listening to this, who maybe have experienced or are experiencing the symptoms, and they're looking for a diagnosis, they feel that just something is not right. What is your advice to them from both of you?
Dr. Steven Phillips 29:20
I mean, my advice is, well, twofold. When you say when people don't have a diagnosis, they have symptoms that are a lot, a lot of people that do have a diagnosis, keep in mind that my diagnosis were spondylitis, which is a arthritis of spine, and rheumatoid arthritis. And there are people who get diagnosed with fibromyalgia or chronic fatigue syndrome or multiple sclerosis. And, you know, I can quote chapter and verse, the enormous amount of medical literature that links all of these conditions to underlying infections. And so they sort of make that clear that a lot of these diagnoses aren't really truly diagnosis. I mean, they're descriptions, they're collections of descriptions where they use One or two medical words, and it's a lot shorter than listing 40 symptoms. And, and that's really what they are. So I consider them non etiologic diagnoses are really descriptive diagnosis. If somebody breaks their leg, you know that they can't walk because they have a broken leg. But if they're weak from multiple sclerosis, and they have the myelination breakdown of the nervous system, how do we know there's not an infection driving that and the the evidence, you know, behind the relationship of sparkle infection, and Ms is huge, huge, huge, huge. So, put the advice that I give to people is to follow their gut. Like, sometimes doctors will say, because I went to med school or tennis or before, you know, sometimes it's kind of almost parental like Because I said so. And, and I think that you have to, if something doesn't feel right, if a doctor is disrespecting you or dismissing a valid, you know, point you're bringing up I mean, I've had doctors tell me that they attributed some symptoms to anxiety. But I don't really have anxiety. That's the only that's the only thing you know, like, when my when when I got sick enough that my joints swelled up like cantaloupes, they stopped saying that, you know, but until, you know, at the beginning, when it wasn't obvious to the whole world, I mean, my blood counts went nuts, everything, you know, when was so obvious that I was very, very sick? And you know, so yeah, my big tip is to not give up to find a doctor that can help you that realize that, unfortunately, in today's medical state of affairs, that it's really like an interview system. I mean, you're interviewing the doctor, it's you know, you have power, you don't realize it, but the patient is really the one who's in control, you're it's your body, and you have the right to make informed decisions. And those informed decisions should include various schools of thought on how to, let's say, evaluate rheumatoid arthritis or to evaluate multiple sclerosis. And unfortunately, people are just getting one school of thought and it's immunosuppressive way. And that's the only way
Dana Parish 32:11
I would answer that question. Similarly, and I would add that I was relentless. And that is my style. Anyway. Dr. Phillips will not argue with that good or that categorization. But I was determined to find the answer. And I, you know, when you're really sick, it's very hard to advocate for yourself, but you have to find the strength to do it. And if you can't, you have to bring somebody with you, who will do it for you. And I never settled for answers that didn't feel right. To me. It took me five months to get an answer that felt right. And it took my own research. I mean, I ended up googling all my symptoms. And what came up was a line checklist from a doctor who had retired his wonderful Dr. Joe Burris gone out on. And when I saw that checklist, and when I saw all my symptoms on there, the rage that I felt, because I had just been to a dozen doctors who didn't know this information, and it's right out there for you. The thing is, when doctors finished medical school, it's like the education stops for so many of them, they don't go and read the literature, they don't look it up, they just take the sound bites and regurgitate them to patients, and they're wrong a lot of the time. So I would say you have to advocate for yourself by also knowing when to move on. When a doctor isn't listening to or when they tell you that it's all in your head, and then it's all psychiatric with no cause and that you're just anxious. And they sort of attribute it to something in your life that really doesn't warrant the kind of anxiety that you feel. You have to kind of look elsewhere. Personally, I if you have these symptoms, and you've ruled out other big diseases, cancers, diabetes, Dr. Phillips can probably rattle off the list. I would go to an eyelids doctor, which is international Lyme and associated diseases society I la de s.org. And that's actually something that I did, you can email them and tell them where you live and they'll send you back a list of practitioners within like 100 miles of you. And I think that it's all about going to a specialist and somebody who really understands chronic complex illness in terms of how infections relate to them. And I don't think sadly, and shockingly, that infectious disease doctors are the best call for that. Once you get past the very acute, you know stages I just don't think that they can treat I've never really heard it. with very few exceptions, and same with internal medicine, unless people are specially trained, I just think you're going to hit a lot of dead end roads. And I wish I had taken that advice. I had been given it and I didn't listen, because it didn't make sense to me. But now that I understand the landscape, I can actually tell you that with
a lot of confidence.
Alison Hall 35:21
So much of what you guys are describing has come up recently, with long haul COVID patients with these long term symptoms being told, well, you had COVID and you recovered from it, you're testing negative, you're fine. You're probably anxious because you went through a traumatic experience with COVID. I mean, how does that fit in? For this might be this is a question for both of you, Dr. Phillips Phillips medically with what you've looked at with long term COVID patients, is it a similar autoimmune disease that is caused from this infection? Like what is the Connect here with the patients that you see and with what you're hearing about long COVID patients?
Dr. Steven Phillips 36:04
Yeah, so there are some really eerie overlaps between vector borne illness and COVID, especially long term COVID. They are both prone to problems with testing. The, you know, testing for vector borne illnesses is notoriously poor, testing for COVID is not amazing. And then they have these high rates of chronic illness. And there is data that's accumulating that people with COVID, many months out, they found active live virus, and it's not easy to find it's not from the swabs are just in the nose, the swabs are negative, they've had to go into the GI tract, they've had to do biopsies of the olfactory bulb right next to the brain, you know, way up into the nose. But these are patients who've had the regular nasal pharyngeal swabs were negative, but the biopsies are positive, and they were live virus, not just positive fragments, you know, just positive pcrs. So when people have long COVID, you say, well, it can be one of three things, one of three most likely options as to why they're having long COVID the easiest one for for us to get our heads around, I think, is that they did some permanent damage, you know, their lungs are shot, they've gotten bashed for the damage, it's gonna take a really, really long time to heal after the virus has gone. Okay, that makes sense to most people. And I think that probably is what's happening in some subset of patients. But what about the patients that had either mild illness or had a decent illness, but then they felt better and they were fine for a few months, then they start getting sick. Again, when you have this latency period, you can't really say it's from bad damage that's slowly healing, it doesn't fit that kind of paradigm. And then you say what is going on to these people have some low level of virus stone, their body is a herpes like virus, that it's causing some subtle damage. And that's a it's a reasonable course of thought. And and then the other thing that could happen, because before COVID came along, most people don't know this at all. But there are very high rates of asymptomatic infection with microbes like Lyme bacteria, and bartonella, and many others, just in people who are healthy, and they just walk around with these things, and they just never get sick. So I have in the past, again, years and years, decades before COVID came around, I would see patients where they would get like Dengue fever, or just a really horrible flu or bad mono, and all of a sudden, they're chronically ill. And then I evaluate them for vector borne illness, and they show signs of that on testing. And I treat them with not antivirals, but antimicrobials. And I use the term antimicrobials because I use both antibiotics and some herbals and supplements that, you know, kill the bacteria that aren't technically antibiotics, but the work in similar ways and they would respond so so did those Abed immunologic insult like a bad viral infection set off like an immunologic? You know, set off the applecart you know, just make it so some of these infections that were previously asymptomatic, now become symptomatic. And it could be a very fine line between health and disease and some people who have other asymptomatic infections. So that's yet to be determined. We don't know this is kind of still knew. And but I do think that it's not going to be as simple as a one size fits all approach. And when people are using the term post COVID or postinfectious syndrome, it's a damaging terminology because the infection, the investigation stops, like you put these people in a box and they can't get out of it. They're just a post infectious syndrome. That's just the way it is. Now you have some weird autoimmune disease. Now you have some weird immunologic phenomenon and we're gonna try and find another immune suppressant to give you now for the rest of your life, because this is what we're going to do. And that's gonna be very profitable for some drug companies. And patients will be on a lifetime as a medicine and maybe that's not necessary. So in my experience, I'm a big proponent of early treatment for COVID are no infections, ever where the official guidance has been, don't treat the infection early, wait to the latest stages. And if you get really, really sick, go to the hospital. And we'll try and give you something. If you cut your finger in the kitchen, this is like and we use this as an example in the COVID chapter of the book. So if you slice your finger in the kitchen, and you call your doctor, the doctor says, Wait till your fingers like ready to get, you know, fall off, basically, and wait till you're in septic shock and call me then find a new doctor. Like, they don't do this. This is not the standard for infections, they say they treat early and that's how you're the best outcomes. So I've been treating early whenever data has come out about stuff. In some studies that's safe, and you know, innocuous and, and inexpensive. I've offered it to my patients. I said, Look, this isn't standard of care. There is no standard of care about COVID. But if I was in your situation, I would want a doctor to offer me this. And my patients have done very well. I've treated over 50 COVID patients, none of them have gotten sick, many of them have been high risk, and they all turn around in 24 to 48 hours. None of them developed long. COVID I only have one long, COVID patient and she did not call me what she had a cute COVID she called her primary care doctor and the doctor says nothing to do stay home and you'll get over it. And she did not get over it. She stayed home. And she developed chronic chest pain and shortness of breath and couldn't breathe. And then she called me in a panic. And she responded ivermectin, which is a drug that's now being talked about for COVID. And a lot of studies showing it's useful.
Alison Hall 41:35
And Dana, when you hear what these long, COVID patients and you know, the media that's coming out about them or when you talk to I know, you spoken with Diana Barron, who heads up the long COVID community on Facebook. Do you empathize with these people who are describing feelings of like, Am I crazy? And why won't people listen to me? And something is not right here?
Dana Parish 42:00
Yes, I'm horrified by it. And actually, I've actually I've actually learned a lot from Diana, because I haven't been immersed in that world. But the but I do read everything with interest. And I do talk to a lot of Lyme patients who have gotten COVID, and who have gone on to have worse symptoms. And these are patients who were not treated early, generally speaking. Yeah, it's deja vu all over again, and I'm devastated. The other thing that I recognize is that many of them, in my opinion, do have a chronic infection underlying their symptoms, it makes no sense to me that they have these great periods of latency, only to have this reactivation three, four or five months later, three weeks later, it defies logic, if I'm wrong at the end of the day, fine. But at this point, I think it's extremely important that this be on the table and that this be in the spotlight, this concept is the case with other infections, there's a lot of precedent, there's precedent with other coronaviruses. So my advice to COVID patients is to seek out doctors who will work with you to that end, and really get to go to the ends of the earth to try to understand what is really going on. It's hard for me to believe that in the absence of something driving this, that these people are having this brain fog. I mean, I know there's damage associated with this infection, and there are with other infections too. So nothing is all or nothing. But I do think it's an important piece of the puzzle. And I am highly, you know, one thing that I don't want to forget to say either and Dr. Phillips sort of spoke to it. There is no money and cures. And this has been a thing, you know, a real problem with Lyme disease. And you know, maybe one of the reasons we don't have a good test is because there are people that don't really want Lyme patients to have answers because if you don't, if you keep getting chronically ill, you are going to probably end up on psych drugs and or immune suppressants and you're going to be an annuity for the rest of your life. Me I got better on a bunch of cheap generic antibiotics and Chinese herbs. No, I don't take anything anymore except a couple of vitamins and things that I'm doing for try to prevent COVID. And I will very occasionally have a flare of lime and I will treat it for a week or two with something great benign, like oil of oregano, or tetracycline, which is an old generic safe, you know, antibiotic, so, you know, I'll take it over being medicated for the rest of my life and never getting to the root. So yes, I I do really feel for the long hollers and I do hope that they can take some of the lessons that we've learned in life and apply them. I do think also things like diet, like things that just reduce inflammation, things that reduce your mental state stress and anxiety. And I do think a lot of this is driven anxiety is driven by brain inflammation. It's not just when a pandemic, you're anxious, that's actually really, really offensive to me, because that was what was said to me about, you know, well, of course, you're anxious, you just had this infection, your breasts just swell and your heart failure, no, my brain is on fire, too. So I think we have to respect that.
Alison Hall 45:22
That is a real thing. And I,
Dana Parish 45:25
you know, trauma therapy EMDR, there are things that helped me and that have helped that we write about in the book. And we did a whole chapter on trauma, because these illnesses are so traumatic, and losing the sense of your life as it was, and mourning your old life is incredible. There's nothing more traumatic to me than the kind of disabling crippling illness that you can have out of nowhere, when your life was just going along flying, and for me at the height of my life and career does happen. So it's absolutely crushing.
Alison Hall 46:02
For both of you, I mean, it's, it's crazy that both of you have had these experiences, and especially, I mean, Dr. Phillips, being a doctor, and going through that, and then having this miraculous recovery, and to see both of you doing so well. It's great. I was reading about the so called Lyme wars, and just how even Lyme is this big controversial topic that everybody sort of knows a little bit about, and, but not a ton about and knows that there's, you know, something going on there. Do you think that there, I imagine this is maybe one of the reasons why you've written this book, but it needs to be talked about more, and there needs to be more collaboration between patients who deserve to be heard, and the medical community in order for this line war, to be productive and to actually help people.
Dr. Steven Phillips 46:58
I think that the line wars are mainly between the doctors, not so much the doctors and the patients, because there's a subset of doctors who say that there's no such thing as chronic Lyme. And then there are doctors like myself who testify at these hearings, and we present the evidence of chronic Lyme. And every time the two groups have gone together in a public forum, the group that says that these chronic infections are real and very important thing, you know, when these laws are passed in various states, and the reason is because the evidence is incontrovertible. So they have isolated live Lyme bacteria, from humans, after literally years of antibiotics, no exaggeration, they say How often is up and done about 75 times in about 30 different studies, you say why so few, because the bacteria is exceedingly difficult to isolate from people that have the illness. So keep in mind that Lyme is a cousin to syphilis. They've been trying to grow syphilis picture from the blood of syphilis from patients for like 100 years. Good luck. It's it's like this elusive thing that nobody can do. And the animal data for Lyme has been so incredibly strong. So whereas they can't isolate it from the animals, blood just like the people, they cut the animals up and they find it actually no problem. So the same treatments that are supposed to be curative for people don't really care, the animals, even the monkeys, they've done for studies, dog studies, mouse studies, monkey studies, we're not carrying these animals. And then the marish no cherry on top of everything is that they found out about five years ago, now a lot of universities have come on board, the Johns Hopkins, two lane, Northeastern, you know, very reputable large universities have all found the same thing. Oops, we can't kill Lyme bacteria in the test tube with the antibiotics that are purported to cure it and people give me a break, you know, so if you can't kill it in the test tube, how can anybody make the claim that it's easy to kill in the body with all the nooks and crannies to hide, and so they don't have a leg to stand on. And that's just why I personally think that bartonella is much more of a, like a horrible plague throughout the world than Lyman's. And I know I'm a quote unquote people think of me as a Lyme doctor frequently. But I think that the, the, the evidence is evolving, and we're finding it if I have to say my patients that wind up in the emergency room that have the worst degree of illness like the most drama in their lives, and the people who are constantly feeling they're going to die It's really more than the other infections than than Lyme is a big big relationship like I said to Lyman MS, which was horrible and Lyme and Fibromyalgia which is very common, but for things like the true autoimmune conditions like the last level of inflammation, like I had, the inflammatory arthritic ones and the the other autoimmune conditions. It's, it's really more like fontanella is the big one.
Alison Hall 49:50
Dana, for you. What do you want people to know about Lyme disease but chronic illnesses generally like what does it really feel like to be a pain in this space,
Dana Parish 50:01
that is a really good question. I want people to know that there's hope that's a really important thing, because I can tell you from my own personal journey, that there were so little folk for me in the beginning, because I couldn't find very many recovery stories. And a doctor that I saw early on gave me this advice, he said, a lot of the people on the message boards that you're going to encounter, may not have Lyme, they may have other things, and you shouldn't be taking their stories and you know, these things to heart necessarily Go on, get information and leave. Because if you get mired down in this, you're going to never feel like you're ever going to get better, and then they eventually get better and leave. You know, that's kind of what he said. And I actually kind of found that to be true for myself personally. So I would tell people to look for hopeful stories, to keep them going that are similar to them, I would say that they should start looking at medical literature, it's a weird recommendation for somebody who's not in the medical field like I am, but I really learned to educate myself and then to educate my doctors. And I actually have successfully educated some naysayers. I'm not gonna say 100%. But I've definitely presented information in a very just truthful, and very humble way to them, I really would like to engage you about this, I really want you to learn. And I've had many doctors actually come back and say, Well, I just didn't know, I've sent them Dr. Phillips idsa testimony, which is filled with data that I pass I couldn't possibly convey. You know, we've definitely had an even an ID doctor from Harvard, read my interview with him and completely changed her entire life and her entire practice. So you just never know, by putting the truth out there who's going to hear it and whose lives are going to be changed. So I would say, you know, keep going, keep fighting, pressing for answers.
Dana Parish 52:05
you know, find a support system that's really positive. And that will show up for you in those times of need. It's a very desperate and isolating disease, people's husbands and wives leave them, people lose their children, people lose the support, even if their parents, I mean, I've seen it all. And I know Dr. Phillips has to, so um, surround yourself, you know, I surrounded myself as much as I could, with a very small circle of people who just showed up for me didn't care if they came over, and I couldn't talk didn't have any expectation of me for that period of time. And I was very lucky that my publisher at Sony, was told her what was going on. And she gave me space to get better and was very supportive. So I would say, surround yourself with positive people and don't watch stressful TV shows, that was advice that I got from a Chinese medicine doctor that I was seeing, at the same time said, keep your stress level as low as you can. And he just gave me sort of the permission to tune out negativity. And it was simple advice. But it was extremely crucial for my healing, actually.
Alison Hall 53:13
And Dr. Phillips, what about for you, any takeaways that you really hope that people listen to most from this interview?
Dr. Steven Phillips 53:22
I think the like Dana said, it's very important to surround yourself with the people that really come to bat for you. And I did the opposite. I wanted to do everything kind of on my own, except for the people that were taking care of me and making me food and helping me in that way. And I had just a couple of friends that I let see me some of my closest, closest closest, and the other ones I didn't, and I should have had more people coming and going, I should have been, you know, let let myself lean on them. And I should have had my primary care doctor on kind of a short leash. I mean, I meant to so many care doctors, you know, but I remember, she's a nice lady. But when I finally got better, I went for like some visit once a year. And she said to me, Well, I never thought you get better. Take care. You know, it was like part of the thing that just like slipped out when we're saying goodbye. And I just like took it in, and I went to the car, you know, I sat in the parking lot for 15 minutes. And it was just like really Stark realization that if it was up to her, she had no tools in our toolkit. And I wouldn't have gotten better if I didn't seek out everything. I mean, I contacted strangers on the internet, who are researchers and infectious diseases around the world on a daily basis. That was my job to try and save my life. And and it worked. But you have to wonder what kind of people don't have the will those tools you know, what, what are people supposed to do it on a medical training? You know, Dana, her tool that she's relentless. My tool is that I had medical background. What about people that don't have those skills, you know, you have to rely on others. I think it's really, really important. You should build yourself an arsenal. And if you don't have the strengths within you to find people to have those strengths, so they can help you because it takes a village sometimes to get over these things. And I would just, I would echo that, I would say that that's really important to lean on the ones that can help you,
Alison Hall 55:22
Dana, Dr. Phillips, thank you so much for sharing both of your stories with me. I'm just always fascinated by people who take deeply personal experiences, and then turn them into something so much greater, that could help so many people so so glad that your stories have happy endings, and that you've turned it into this really incredible life project. So thank you
Dr. Steven Phillips 55:45
Thank you so much for having us.
Alison Hall 55:53
Thanks for listening.