From Heart Failure to Co-Author of Chronic, Dana Parish

Dana’s Lyme Story and Healing Journey

Mimi: Dana, thank you so much for coming on today. I’m so excited. I first heard you speak at the Lyme Summit this past fall that I was on. It was online. It was a couple day Lyme Summit, and you spoke there, and I was so excited to have your book come out. I just purchased it and I just read it, and I’m blown away. There’s so much to talk about. So thank you so much for coming on.

Dana: Thank you.

Mimi: So I love the fact that I’ve read a lot of Lyme books, and what I love what you both did was you talked about things that people haven’t talked about, to be quite honest with you. I don’t want to call it controversial or whatever, but you’re bringing to the forefront a lot that I’ve thought about and I’ve put together, but I never really confirmed. So I’m so glad that we can talk about that today. But let’s start about with, first, how you came about writing this book.

Dana: Sure I got a severe case of Lyme and Bartonella the summer of 2014 at a wedding in New Jersey, and I was living in New York City, came back with a flu-like illness, got three weeks of antibiotics from the doctor, and was told I was going to be totally fine. “You’re lucky you got it early,” and that ended up to be the first myth that I was exposed to, that I had no idea that is extremely commonly thought in the medical community and the world at large. So early treatment does not necessarily confer a better outcome, actually, at all.

Three months after I finished the doxy, and my initial flu-like symptoms went away, but they do anyway, for the most part. So again, what’s what, who knows? Did the three weeks of doxy and I woke up three months later, and my body was completely haywire from my head to toe. My first symptom was breast swelling and pain, extreme pain. Couldn’t wear a bra. Couldn’t sleep. I was literally sweating from pain. And then my doctor sent me to an oncologist right away because she thought it was really alarming. He ruled out cancer, but he acknowledged, “It’s swollen. It seems painful. I don’t know why. Maybe you are too much soy.” I don’t even eat soy.

So again, just lots and lots of missteps from the very beginning. And then I went on to see 10 top New York City doctors, 12 top New York City doctors from there, and I had everything from fibromyalgia to extreme weakness. I couldn’t lift a fork. I could barely feed myself. I had visual disturbances, night sweats, rashes, all kinds of crazy stuff, severe insomnia, panic, depression, suicidal ideation, all new onset of things at the prime of my life, at the prime of my career in the music business. I just did a big publishing deal with Sony Music, was extremely excited about my future, and then totally struck down, at this point.

                                                        “Early treatment does not necessarily confer a better outcome.”

So I ended up in heart failure in December, and I finally Googled all my symptoms and I had 37 of 60. And that is when, finally, after all the 12 doctors said my symptoms could not be related to the tick bite, thankfully somebody sent me to Dr. Phillips, who saved my life, and he also found another infection that I had that’s super common besides Lyme, even though my Lyme was vastly undertreated, called Bartonella. Now none of the three ID doctors that I saw along the way even considered testing me for any other vector-borne diseases or any other infections.

Meeting Dr. Phillips & Beginning the Journey of Writing Chronic

Dana: So it was so important to us when we met, we just clicked, and we were just very aligned in our thinking. And when I became familiar and aware of the politics driving the misdiagnoses for this infectious disease, I was stunned, and I was like, “We have to do something for the greater good,” and he loved the idea of doing this book, and that’s how it came to be, and we’ve been on a mission ever since we met. It’s been really-

Mimi: Mm-hmm (affirmative). It’s great. And first I want to point out, I love how you guys called it Lyme Plus. So can you tell anybody who’s listening why you refer to Lyme as Lyme Plus throughout the book?

Dana: Yeah, sure. It’s never just Lyme, or it’s so often not just Lyme. So people think of tick bites and they only think of blind, even infectious disease doctors. But ticks are cesspools. They carry bacteria, they carry viruses, they carry parasites. So you can get five infections with one little deer tick bite that’s the size of a poppy seed that will bite you behind your knee, and you will never be the wiser for it, and you will get sick like me, but you won’t have the good fortune of seeing a bite in a bull’s eye on your shoulder like I did. That’s the thing that also people need to know.

People are really weird and defensive about Lyme, if they don’t know about it. I get lots and lots and lots of emails and calls from people saying like, “Will you talk to my sister? Will you talk to my mom? Will you talk to my friend, whatever? I know they have Lyme. Convince them, blah blah.” So occasionally I will make these phone calls or write these emails back and say, “Well, here’s the deal I was never bitten by a tick. I don’t camp. I don’t hike.” Well, guess what? I was bitten in my sleep. So you don’t have to hike. You don’t have to camp. All you got to do is live in the world and you are exposed to these infections, whether you know it or not, whether you believe it or not. Science is science. The truth is the truth. That’s my position. You have to be looking for the root cause of your illness or you’re going to be on the medical merry-go-round and you’re going to be put on long-term drugs that are just going to treat your symptoms. They’re just band-aids, and you’re never really going to fundamentally get better while you’re in this cycle. And that’s where I was.

Mimi: And I love how you talked about in the book that you don’t actually need to even be bit by a tick. There’s other ways to get Lyme Plus or Lyme.

Dana: Correct.

Mimi: Right? And it’s not really talked about it, and it’s kind of controversial. So I don’t know if you want to just touch on that as well.

“These things shouldn’t be controversial. They’re well-documented. There are 30 plus years of science that documents maternal-fetal transmission.”

Lyme Plus and Ways Lyme Is Controversial

Dana: Oh, absolutely. Just in terms of actual Lyme in itself, it’s congenital, too. So it can be passed on from a mother to a baby. Also, so can Bartonella, so can other infections. So there is a placental microbiome. These things shouldn’t be controversial. They’re well-documented. There’s 30 plus years of science that documents maternal fetal transmission. Lyme is like syphilis. So if you think about the history of syphilis, there’s a lot that’s been written about that. A lot that’s been known about that. Lyme is very similar. It’s a close cousin. So anything that syphilis can do, Lyme can do, too.

It’s arguable that Lyme isn’t more mobile and more insidious than syphilis. It can attack any area of the body. It can be transmitted from mom to baby. It can cause fetal demise. It can pause birth defects. It can cause a period of latency and deliver a healthy looking baby, and then your child has lots of neurologic or cardiac issues or ADD, these things that weren’t really such a thing when were all growing up, we even talk about we have microbiologist, Amy Proal, who’s an expert, and she’s brilliant. Talks about the link to autism. So all these things that can cause brain inflammation and developmental difficulties can be linked to infection.

Mimi: Do you also believe it could be sexually transmitted because it’s like a syphilis cousin?

Dana: I do. I do. And there’s some evidence of that. I can’t tell you how many couples that Dr. Phillips and I have talked to where one of them got the other one’s symptoms once they started becoming …

Mimi: And it’s never talked about. It’s weird to think about why is this not talked about? Right? Why is this not acknowledged? Like you said, it’s become political where if you go to the hospital, there’s just two different camps, and why is that? You guys talk a little bit about that in the book. So-

Economic and Political Factors in Lyme

Dana: I truly think that these infections are so out of control that they’re a problem too big to fix. They’re extremely expensive to fix, and the other thing I think that happened is that drug companies know that there’s incredible amount of money in chronic incapacitating illness with immune suppressants. A lot of people that started off with Lyme that ended up with, quote, “autoimmune diagnoses” like me do end up on lifelong immune suppressants like Enbrel or Otezla. There’s a big list of them, and they also end up on psychiatric drugs, which are really difficult to get off of as well. So you become an annuity to pharma if you are chronically ill. There is no money in cures. So if you cure people, the same thing we’re seeing in COVID where cheap, generic, repurposed drugs are being discredited, even though some of them are incredibly effective and shown by data to have …

For example, ivermectin, 80% mortality benefit. It’s cheap. It’s a couple bucks, 10, 20 dollars for a round of ivermectin. Remdesivir is 3,200 dollars to begin with, and it has no mortality benefit. And that’s what sanctioned by the NIH. So I think you just have to also look at the truth of the economics of these diseases. There is no question in my mind that at a high level, people know that infections are driving chronic illness.

Mimi: Right.

Dana: But there’s a lot of cover up here.

“There is no question in my mind that at a high level, people know that infections are driving chronic illness.”

Mimi: No, it definitely is. And I also love how you guys dive into the fact that a lot of auto-immune diseases, which include MS, even, and ALS, I know this too, personally, because I had a doctor that I went and had hyperthermia done, and he actually specializes in ALS patients. I was one of his only Lyme patients, and he said to me out of all of his ALS patients, he has tested them for Lyme, and 100% of them came back with Lyme and didn’t even know they had Lyme. So when I read this in your book, I was like, “See?” I knew, but then seeing it here, too, I would love for you to just talk how, really, there’s not that connection yet. Whenever I hear someone has ALS, I’m like, “Have you tested for Lyme?” And they’re like, “Well, I don’t need to,” and I’m like, “Well, maybe you want to. You never know if there’s that connection.” So I’d love for you to talk about that a little bit.

Dana: Yeah. The thing with ALS, I’m not a doctor, but of course, we write about it in the book, and Dr. Phillips will tell you it’s a really, really tough one to turn around. I think this percentage that he gives is something like 10 or 15% that he’s been able to help, because once it gets to that point, it’s really, really hard to reverse the damage and to save people. That is not to say their Lyme, in some cases, is not and has not caused ALS because it appears that it really has. And there are several examples of that in the book, too.

In terms of other neurodegenerative diseases and Alzheimer’s, these things have all had their roots in infection. MS has its roots and infection, and so does rheumatoid arthritis. All these things that people think of as having no cause, actually do have a cause. And it may not always be Lyme or an infection, there are probably other environmental factors, too. But that said, a huge amount of this chronic illness and these diseases are driven by infection. There’s no question.

Mimi: Mm-hmm (affirmative). And the other thing that you talk about, which I would love for you to go into, is the psychiatric effect to it. We have seen over the years, the increase in suicides, increase of people being admitted into help, and I don’t think there’s that correlation. And now, again, when I find out someone is suffering from schizophrenia or depression, I’m always like, “Have they tested for Lyme?” And they look at me like I’m crazy, but I’m like, “There’s something that could be an underlying cause of this.”

Neurological Aspects of Lyme 

Dana: Oh yeah. It was for me, too. And the thing was, it felt so organic. It felt like something that was attacking my brain. It didn’t feel like situational anxiety. There’s a difference between going through a divorce or I just lost my job or I have a sick child and feeling anxious and depressed rather than being at the prime of your life and, boom, all of a sudden you just want to jump out your window and you have no idea why, and you can’t control these intrusive thoughts. But there are varying degrees. I see people with a low level of anxiety. They tell me, “I have generalized anxiety disorder. That’s what my doctor said.” Well, what does that mean exactly? What is that caused by? If you’re not going through something super stressful in your life right now, you have to look at the brain as part of the body.

So when you have inflammation in your knee and you have knee pain or you have arthritis in your knee, you have to look at the same thing going on in your brain, and certain parts of your brain cause depression, some anxiety, insomnia, OCD, schizophrenia. You can see some really good work also by Dr.Ed Breitschwerdt from NC State. He’s very famous in the world of vector-borne disease. He is probably the world’s top expert on Bartonella, and Bartonella is another very common vector-borne disease, cat scratch disease. It can be spread through many different ways. Obviously, cats can spread it through a scratch or through a bite, cat fleas, you can get it through ticks, you can get it through mites, all kinds of stuff.

That’s another one that drives, and it’s very often confused with Lyme. So people get a negative line test. Again, tests are terrible. So we don’t even really rely on those, but they may have … For me, I also had Bartonella. Nobody was addressing it. And some of these treatments overlap, and some of them don’t. I needed some other things besides what I was given to just treat Lyme. I don’t think I would be here without having the proper diagnosis for both infections and having treated both infection thoroughly.

Mimi: Mm-hmm (affirmative). Yeah. It’s amazing that these facilities don’t test that right when you get admitted. There almost should be a panel that is run to figure out your nutritional panel, if you’re having deficiencies for minerals, or if you have a virus or a bacteria that could be affecting it, especially for children. My daughter was, I don’t know, maybe in six or seventh grade, and overnight, she became OCD, anxiety, screaming at night if you tried to get her to bed. It was overnight and it was crazy, and we didn’t know, and then we figured out it was the Lyme that was causing it. So once we treated the Lyme, it went away.

Dana: I’m glad, thank God, she got better. And I hear it every single day, and I lived it. I watched my symptoms peel away layer by layer, month by month as I treated my Lyme and Bartonella. And what never would have happened with psychiatric drugs or immune suppressants was that. Maybe it would have quelled my symptoms, but half the time these drugs don’t work that well. They also have a ton of side effects. So when you’re looking at these commercials and you’re looking at an Enbrel commercial, for example, and it’s like, “New and worsening heart failure, cancers, this, liver damage, kidney disease,” okay, well, what happens is when you suppress your immune system, but your immune system is overreacting because it’s reacting to an actual infection, but you suppress the body’s ability to fight that infection, the infection actually gets worse and causes your new and worsening heart failure and can cause these cancers. It’s really scandalous, and it’s really a crime to suppress people’s immune systems as quickly and as often as we do without thoroughly investigating.

Mimi: It’s interesting that this book came out now when we’re going through what we’re going through because you see a lot of similarities of what’s happening in the world, especially for the post-COVID … I don’t know what it’s called.

Dana: Right. It’s a bad term. It’s a bad term.

Mimi: Whatever they’re calling it, and then now, like you’re talking here about how there is no PCR test for Lyme disease, but that’s all hear about now. We all have to go get PCR tests to go anywhere and travel or do anything, go to school, but then why is there not a PCR test for Lyme? Or why is chronic Lyme not recognized, but chronic COVID is? 

Recognizing Chronic Lyme 

“You’re now seeing people who’ve been vaccinated who were long haulers for the last year, and some of them, their entire symptomatology, everything’s resolving.”

Dana: Well, it’s a very, very good point. The thing with COVID is that now, and we’ve talked about this too, and we do talk about this in the book, we are very worried because that term that you were talking about is called post-acute sequelae syndrome or something. It’s PASC. And it’s an awful term because it’s very similar to post-treatment Lyme disease syndrome where the implication is that the infection is gone, and COVID is a chronic infection in some percentage of people. It’s already been found living in the gut, it’s been found in the spleen, it’s been found in other organs long after the initial known infection has resolved.

So what is driving the symptoms of all of these long haulers? I’m sure it’s a combination of things. There’s no question that COVID causes extreme damage, in some cases, throughout the body and blood clots, and lung damage. But there’s also no question that chronic infection is also driving symptoms. You’re now seeing people who’ve been vaccinated who were long haulers for the last year, and some of them, their entire symptomatology, everything’s resolving. Well, you just have to assume that the immune system was boosted really, really quickly and really well and it was able to knock out the reservoir of infection, and there’s no other great explanation for why this is happening. So I think we have to start looking at these infections for the truth of them. There’s tons and tons of science, as you know from reading the book, that demonstrates Lyme is chronic just like Bartonella is chronic, just like other infections are chronic, and nobody argues with tuberculosis being chronic. Nobody argues that herpes viruses can be latent and you get chickenpox when you’re little, and then you can get shingles from that same virus 30 or 40 years later, and then it can lead to Alzheimer’s. 

Mimi: Right. So why are they not acknowledging? Because I think that’s a lot of the psychological damage that is happening to people who have chronic Lyme, right? Because we feel like no one believes us. I’ve heard from so many people, including myself, where we’ve gone to the emergency room numerous times to just be told that we’re crazy, that chronic Lyme doesn’t exist. So why do you think it’s not even being acknowledged?

                                      “It’s a scandal. It is a major coverup. It’s not a conspiracy theory. It’s actually true.”

Dana: Because I think there’s tons of money to … Honestly, I think it’s a huge scandal. I think that tons of money is being made keeping people chronically ill, and there’s not enough money in cures. I also think there’s just a lot of misinformation and propaganda put forth about antibiotics. If you have a doctor that’s using antibiotics responsibly and wisely, you’re not to end up with C diff, most likely. The real antibiotic resistance is coming from agriculture. There’s 80% of our antibiotic intake and exposure is from agriculture. It’s not from Lyme doctors-

Mimi: It could be from the … yeah.

Dana: It’s not from Lyme doctors treating Lyme for six months. You put children, teenagers on doxycycline for five years for acne, and yet we are not allowed to get more than two or three weeks of it for a brain infection. That is so scandalous. So people really understand, they don’t even give kids probiotics. I have tons of friends with teenage boys who’ve been on these drugs for years and years and years. Nobody bats an eye when dermatologists give them, but a Lyme doctor gives you three, six months of antibiotics, and oh my God, they’re on some hit list and they get their license revoked.

Mimi: Right.

Dana: It’s a scandal. It is a major coverup. It’s not a conspiracy theory. It’s actually true. So-

Mimi: Right. No, it is true.

Dana: We present a lot of the evidence in the book, and I think, honestly, it’s such an expensive problem to deal with, and it’s such a profound problem to deal with, and I do think public health isn’t equipped to deal with it.

Dana’s Words of Advice For Lyme Warriors

Mimi: It’s true. Now, just to end, how would you say, are you back 100%? Are you back to yourself?

Dana: Yeah. I would say that I have been well for five years. I did about a year of treatment, although I was a lot better for the majority of … under treatment, under the care of Dr. Phillips, I was markedly better within, I would say, six months. My heart failure was gone in two months.

Mimi: Wow.

Dana: My psychiatric stuff was gone pretty quickly after that, and my numbness, my tingling, my body pain, all those things just melted away step-by-step. And I did about a year of treatment, and that meant that I was on and off. The way he treats, every two weeks I would pulse. So really, the total time of me being on treatment was more like six months if you add up the actual time I was taking different therapies. I’ve been in remission. I consider myself for about five years. When I feel Lymey, I first try to sleep really well. I first try to clean up my act and eat no sugar and don’t drink coffee and don’t have any wine and those kinds of things. And then if that doesn’t work, I go right back on a couple of weeks of antibiotics, and I almost always get right back on track. So I actually have always gotten right back on track. So I’m really, really lucky. I don’t wait to treat. I don’t hesitate to treat. If I’m not better in a couple of days, I think it’s really important for people to know.

Mimi: So that Lymey feeling that you get, do you think it’s the Lyme re-waking up and you can take the antibiotics to get it back down again?

Dana: Definitely. They’re chronic infections. So whether people recognize that or not, or believe it or not, it’s science, it’s true, and every single time I take antibiotics or antimicrobials, I can even just take a round oil of oregano. It doesn’t always have to be anything major. And in fact, the only two things I ever take are tetracycline, which is, again, put kids on it for five years for acne. I’ll take it 10 days to two weeks, a few times a year, or I’ll take oil of oregano.

Mimi: How do you take that?

Dana: Liposomal oral from a pharmacy called Hopkinton Pharmacy. I don’t have a preference for a specific brand. It’s just the one that Dr. Phillips used to prescribe, and now you don’t need a prescription for it. So I’m used to it. I know I tolerate it. I trust them. So I feel comfortable there, but there’s probably many brands that are great.

Mimi: The antibiotics that you took pulsing, were they all oral or did you take any through IV?

Dana: Absolutely no IV. We talk about this in the book about how IVs are not necessarily better. They come with more risk, and they’re generally, in his experience, not necessary. So I’m not against IVs when people get better with them. I’m thrilled. It was not my path.

Mimi: And now there’s nothing else that you’re doing, like do you take Epsom salt baths or saunas, any kind of other things to take care of yourself?

Dana: It’s a great question. At this point, I don’t. During the time that I was very acutely ill, I did. Actually, a lot of things people told me to do made me, personally, feel worse. So I don’t want to discourage anybody from trying any of these safe things like Epsom salt baths. For me, they made me feel awful. So I kept doing them, thinking, “I’ll feel better,” and the only thing that really helped me when I was herxing, and I’m sure you’ve talked about this before, is gluten. I took some liposomal glutathione. That would help, and sometimes lemon water, and also just pulling back on what I was doing.

Of course, I treated under Dr. Phillips with a rotating course of antimicrobials and antibiotics, very simple stuff. Nothing wild and crazy that you’ve never heard of. And then I did a simultaneous adjunct treatment with Dr. Zhang in New York who has a Chinese herbal line. A lot of people recommended it to me. So I wanted to do both. I’ve always been a fan of Eastern medicine and done very well with Eastern medicine. So I did them both together. There’s more than one way to skin a cat. People sometimes get upset because they don’t want to do antibiotics, they don’t want to do this. There are other things you can try. This is my way of recovering. It may not be your way of recovering, and that’s totally okay. I didn’t know anything. So when I came into this, I had one or two friends that I didn’t even meet in person. They’re now very close friends, but angels who guided me through this process and told me what to do. But I never really went down the rabbit hole because the first doctor that I had before Dr. Phillips, who actually diagnosed me, I was out here in California and I was so sick and I couldn’t breathe, and that’s the heart failure was at its worst. So somebody got me an appointment with a doctor out here, and his advice to me, which I treasure helped me lot, was to not go on message boards and start going down the rabbit hole because he told me, “A lot of times you’re going to just see really bad stories and no hopeful stories because the people who get well, when they get well, they leave the boards.”

And that is the case, and it’s also one of the reasons that I wanted to write this book with Dr. Phillips, is because I could not find hopeful stories when I was going through this, and it was the most incredible despair I’ve ever felt in my life to feel like I had no hope. So if I can be a beacon of hope and my story can help people and that bunch of stories that we put in the book that are far worse than mine, where people came out of horrific illnesses and horrific death spirals, that’s a gift that I want to pay forward because it’s my commitment to the world. I got better. I need to share this message. I cannot let this crime continue to happen for another generation.

Mimi: Right. This is amazing, Dana. Thank you so much. This is Chronic. For anybody who’s listening, you have to get it. It is definitely worth reading, the history and everything that we talked about. And I really, really appreciate it and everything that you’re doing for the Lyme community. So thank you so much.

Find Dana and Dr. Phillip’s book Chronic HERE

This episode was sponsored by  Dr. Rawl’s Vital Plan Supplement Line. Dr. Rawls is a trusted MD whose life was upended by Lyme but was able to heal himself and use his experience to help others on their journeys battling Lyme. He is the author of Unlocked Lyme and the founder of Vital Plans, a supplement line made of herbs that supports the immune system (made especially for Lyme warriors). Dr. Rawls offers a free online survey that can help you get the right supplement protocol and on the track to a healthier life. Go to lyme360.com/DrRawls to learn more about the amazing herbal protocol I have been using.