Episode Transcript
[00:00:01] Speaker A: Welcome back to Integrative lyme Solutions with Dr. Karl Feldt.
[00:00:05] Speaker B: I am so excited about the show that we have ahead of us. We have some phenomenal information that could save lives.
You're gonna need to tune in to what's going on today. The information is jam packed, so don't step away.
Hello. Thank you so much for joining Integrative lyme Solutions with Dr. Karlfeld. I am your host, Dr. Michael Karl Fe Belt. I've been in clinical practice since 1987. I've seen pretty much everything under the sun, worked with so many different Lyme patients, and I know what a devastating disease this is. That's why I'm doing this podcast to make sure that you are armed with the information that you need in order to be able to be successful in your struggle with Lyme. We'll be featuring authors, doctors, professors, and also people like yourself that have gone through the journey that you're going through, that have been where you've been and is now on the other side. And they get to tell their victorious story as to how they battle Lyme so that you can implement that in your life as well.
Be sure to like us and write a review on whichever platform that you're listening on. What that does is it enables other people to see us more so that they have access to this information as well. So I'm so excited that you're tuning in and get ready for this upcoming show. It is going to be amazing.
Well, Jennifer Krystal, thank you so much for spending some time with me today on Integrative lyme solution with Dr. Karl Feld.
[00:01:48] Speaker C: Thank you so much for having me.
[00:01:51] Speaker B: Well, so you authored a book, One Tick Stop the Clock.
So obviously there was a reason for writing that book.
If you don't mind kind of telling me a little bit about that journey. I mean, how did it all start?
What was it that stopped the clock?
[00:02:14] Speaker C: It was a tick.
A tick that stopped the clock of my life. I was bitten by a tick at age 19 while working at a summer camp in Maine.
Though I didn't know until eight years later, I did have a rash on my arm. It wasn't a typical bullseye rash. It was an erythema migrans rash, but it was a blotchy red rash. And at the time, lime was not on my radar and was not on the radar of the camp nurse or other people who are other medical practitioners that I went to see. That was in 1997.
And I had waxing and waning symptoms for eight years. Just sort of getting worse and worse until I became totally bedridden in 2003 and was finally accurately diagnosed in 2005 with Lyme Babesiosis, ehrlichiosis, and also had chronic active Epstein Barr virus.
[00:03:07] Speaker B: That's a. That's a lot. So when you were talking about waxing and waning, what. What kind of symptoms were waxing and waning?
[00:03:16] Speaker C: The biggest thing was flu like symptoms. I would have fever, extreme fatigue. When I was in college, it was. When these would come on, it would be difficult for me to walk to class or walk to the dining hall, joint pain, headaches. And then eventually everything just worsened. It would turn into migraine headaches, the exhaustion would get worse. I was very susceptible to other acute illnesses, was seemed to chronically be getting bronchitis or ear infections, and eventually was having some brain fog, was having nightmares. My hands were trembling, my feet were burning.
I started developing systemic hives. And again, all of these things would come on and off, and doctors would just sort of look at them independently and not think about, you know, was there any root cause that might be linking them all together?
[00:04:08] Speaker B: And kind of, how did you. Because at that time, you're 19, going to school, going to college, I would assume. I mean, how did you navigate all of that? And then also friends, social life, how was all of that impacted?
[00:04:25] Speaker C: It was really difficult. By the times I was doing well, I felt great. But then I was always just getting sick again, and I really just felt like I couldn't keep up with my peers.
And when I would go to the college health center, they would always test me for mono, and I didn't have mono. And they would say, there's nothing else wrong with you. And eventually they would say, you know, maybe you should see someone in counseling about all of this.
And I started to believe that, you know, I started. Not that there was a problem with seeing anyone in counseling, though. There was certainly more of a stigma around mental health conditions at the time. But I started to believe, maybe it's all in my head, you know, maybe there really isn't something wrong with me, or maybe what's wrong with me is I just can't keep up with everybody. And so I tried to push my symptoms onto the carpet and just keep going more and more.
And it was difficult. It was really difficult to keep up socially, difficult to keep up academically. And then I would do well for a time, and then. And then crash again.
[00:05:22] Speaker B: And how did your. Your friends, I mean, friend group, how did they respond? And family members, I mean, how. How did they respond to your symptoms? Sometimes. Being there, not being there. I mean, how, how was that?
[00:05:38] Speaker C: Was really difficult for everyone to understand, myself included. It's interesting. I just saw a college friend the other day who I hadn't seen in years and she just developed a chronic condition herself in her back and read my book and you know, really felt seen in the book, but said, wow, I just didn't really realize what you were going through at the time.
And you know, my perspective was like, oh, everyone must see me as the sick girl, the one who's always getting sick. And she said like, I just, you know, sometimes you did, you got sick more than ever everyone else, but I just didn't really realize, particularly because so many of the symptoms were invisible. And so it's not like I had a cast or a cane, you know, to show what I was going through. And so I think it was, it was difficult for people to understand.
[00:06:25] Speaker B: And your parents, I mean, how, what, what role did they play throughout this process?
[00:06:32] Speaker C: So in 2003, when I began, I was living out in Colorado. It had been my dream to become a ski instructor after college. And I was, I was living out and became totally bedridden and I had to give up my life of independence and my dream job and move back with my parents in Connecticut. And it was really difficult for all of us. They have since come to a wonderful understanding of tick borne illness, but at the time didn't really get it. And there was a lot of pressure of when are you going to get better, how are you going to get better? When are you going to get back to your life? And it was really difficult for everybody. They certainly didn't expect me at age 25 to be back home.
And everyone was just sort of wondering what is actually going on and when will I be getting over it.
[00:07:22] Speaker B: Yeah. And that's the thing that I hear this again, Again, they have a certain level of patience for X amount of time and then after a while they're thinking, well, like you're saying it's got to be in your head because if it was, you know, some illness, it would have been done by now, you know, so it's got to just be in your head, you know, so how. And you're kind of starting thinking that, you know, maybe it is in your head. I mean, how, how did that feel? I mean, how did that change how you were addressing things?
[00:07:58] Speaker C: I felt a lot of shame and I felt a lot of pressure.
And um, I just, you know, I started to question maybe it, maybe it is all in my head, you know, and that really frightened me. It frustrated me. I felt that doctors weren't listening to me, but also started to question if this was somehow my own doing or something I should be doing better or you know, was it psychosomatic? So it, it really just led me to question myself.
[00:08:31] Speaker B: And, and did you, I mean when you think that it's in, you know, something that you're thinking wrong or emotionally, did you, did they try to prescribe them antidepressants or anti anxiety medication or you know, you said you went to a counselor. I mean what, what, what did you unravel with the counselor? You know, so what, how did all. As you played that out, what did all of that look like in the beginning?
[00:08:58] Speaker C: In 2003 when I was first sick and I was diagnosed with chronic active Epstein Barr virus, but had not yet been, which was a true diagnosis, but was only half the diagnosis and I had not yet been diagnosed with tick borne illness.
There's a scene I write about in the book. A primary care physician who I was seeing said similarly to what the college people had said, college health center people had said maybe you should see someone about this. And I had the same reaction of oh, I'm being told it's in my head again. But I was open to it. And he sent me to a psychiatrist and the psychiatrist, there's a scene in my book, you know, really gave no observation to my physical illness validation to, to my physical illness, except to ask me if I had a living will.
And then went on, she gave me a workbook for people with social anxiety disorder. And I looked through the workbook and I said this is not me. I've always been, I'm an extrovert. I've always been a very social person and in all the places that I've lived. And, and then I really started to wonder, well, what category have I put put into by the psychiatrist, by the primary care physician. And I, and that's really, you know, I write about in the book. That was really the moment where I felt like I need to stand up for myself and for other patients who need to be heard and know that this is not the correct diagnosis, this is not the correct practitioners for me to be seeing. And so I did not see a counselor again for it was another two years until I was accurately diagnosed with tick borne illness. And then at that time I did begin working with a great mental health counselor who had worked with people with chronic illness and was very validating of my experience and did not give me any, any diagnosis besides my physical diagnoses and did not put pressure on me time wise, but really helped me to learn how to live my life well in the context of chronic illness.
[00:11:00] Speaker B: Yeah, and that's the thing is that you have these so called professionals and because they are unable to essentially recognize what's going on, then they try to put you in a box that has nothing to do with what you're dealing with.
And then like you're saying, then you're starting to question yourself because they are the professional, you know, they should know.
But it's exactly what you're saying. I mean you, you know, you should not be bullied, you know, by these so called professionals.
You, you know your body better than they do and, but that, that's kind of the challenge, you know, when you are then looking for answers and you're thinking that they can give you answers and what they're saying is even further from the truth.
[00:11:47] Speaker D: Hello, dear listeners, this is Dr. Michael Karlfeld, your host of integrative Lyme solutions. Today I'm exc exclusive opportunity from the Karl center where we blend healing power of nature with groundbreaking therapies to combat Lyme disease and its associated challenges. At the Karl center, we're not just fighting Lyme, we're revolutionizing the way it's treated with cutting edge therapies like photodynamic therapy, full body ozone IV therapy, silver IVs, brain rebalancing, autonomic response testing, laser energetic detoxification and more. We aim to eradicate Lyme. Our approach is comprehensive, supporting your body's immune system, detoxification processes, hormonal balance and mitochondrial health, ensuring a holistic path to recovery. Understanding Lyme disease and its impact is complex, which is why we're offering a free 15 minute discovery call with one of our Lyme literate naturopathic doctors. This call is your first step towards understanding how we can personalize your healing journey, focusing on you as a whole person, not just your symptoms. Our team, led by myself, Dr. Michael Karls, is here to guide you through your recovery with the most advanced diagnostic tools, individualized treatment plans and supportive therapies designed to restore your health and vitality. Whether you're facing Lyme disease head on or seeking preventative strategies, we're committed to your wellness. Take the first step towards reclaiming your health. Visit us at thecarlfulthscenter.com or call us at 208-338-8902 to schedule your free discovery call at the Karlfield Center. We believe in Healing naturally, effectively and holistically. Thank you for tuning in to integrative lyme solution with Dr. Karlfeld. Remember, true health is not just the absence of disease and it's achieving the abundance of vitality. Let's discover yours together.
[00:13:47] Speaker C: And I understand that so many patients believe that, you know, because they are the professionals. And you know, I feel lucky that I, you know, eventually was able to push beyond that. But you know, patients get written into boxes all the, all the time. And I, and I recognize that I was also, and I was also dealing with anxiety and depression as a result of the tick borne illness. And so we also have this tendency to try to separate out. Well, either it's a, it's a mental illness or it's a physical illness. But without thinking about, well, there could be, you know, mental health repercussions or mental health manifestations of a physical illness and both could be going together rather than separating them out.
[00:14:30] Speaker B: Yeah, and exactly. I mean, obviously when you're in pain and you're not able to do what you're wanting to do, you're not able to pursue your dream to become a skill ski instructor that is going to, it in itself will impact you emotionally. But it doesn't mean that the illness is emotionally based. You know, it is like you're saying it's a repercussion of, you know, what, what initially was taking place.
[00:14:57] Speaker C: Yeah, it really got me thinking later about cause and effect and, you know, realizing that mental health conditions or mental health manifestations were effects of the physical illness, but they were not the causes. Cause.
The cause was a tick.
[00:15:14] Speaker B: Exactly, exactly. And so I'm curious, so you kind of went down that rabbit hole, kind of the emotional, mental. But then how, what did the rabbit hole look like in regards to your health journey before you got to the appropriate doctor? You know, what were, what happened there? I mean, what, what kind of diagnosis, what kind of treatments, you know, what was going on throughout that whole process.
[00:15:42] Speaker C: So at the time, my only diagnosis was the chronic active Epstein Barr virus. And I was fighting so hard for people to believe that, that it really didn't even occur to me, like, oh, there might actually be something else going on in addition to it. I was just, you know, fighting so hard to be believed for that.
And I was seeing a naturopathic physician at the time who was as helpful as he could be knowing, you know, with that only diagnosis. And he did feel there was something else going on, but just hadn't quite gotten to it yet and was able to help with other Impacts of what was happening, like adrenal function.
Thyroid helped me to get onto an anti inflammatory diet. So we did things like that that were helpful, yet we were still not getting at the root infection or you know, treating the root infections, I should say.
He did acupuncture, Chinese herbs, and they were helpful to some degree.
But again, we were not getting at the root infections, so they weren't helping to the degree that either one of us would have liked.
[00:16:51] Speaker B: And at least you weren't doing a lot of the destructive type of therapies. These are still supportive even though they were not identifying what truly was going on, just supporting the body in itself to try to heal itself. But when you have that tick borne illness that are kind of nagging and going after the immune system, it's not going to be enough to do acupuncture or some of those therapies.
[00:17:21] Speaker C: Exactly.
[00:17:23] Speaker B: And so when did you finally, I mean, as you were going through your journey and you were not improving. I mean, here you're 25, you're with your parents now.
How, how were you guided to go to the doctor that finally made the appropriate diagnosis?
[00:17:43] Speaker C: So it was interesting. I, I write this scene in, in my book as well. So one day, and I had been basically bedridden for, for a couple years and one day I was drying my hair, which was a big deal because I didn't have the energy to do that at the time.
But as I say in the book, you know, maybe I was cold that day, maybe friends were coming for lunch. Whatever it was, I was drying my hair and because my hands were up holding the dryer, I could see my elbows in the mirror. And I had big red rashes on either elbow.
And so I went to the naturopathic physician and I at that point had gotten used to just writing symptoms off because that's what so many doctors had done. So I said to him, I don't know, maybe I was leaning on my elbows funny or something. And he said, you know, those really look like Lyme rashes. I really think that you should go to a Lyme physician. And I really appreciated that doctor for recognizing that there was something. He said, you know, I think there's been an underlying infection. You would be getting better if there wasn't. And he really recognized that it was something, that it was out of his wheelhouse. And so he sent me to someone who was. And I really appreciate the humility of that because I, it allowed me to, to then, you know, open up that possibility and go see a Lyme literate physician and then was diagnosed with lyme ehrlichiosis and babesiosis, all of which were CDC positive tests, by the way, as well as a clinical diagnosis of them.
[00:19:11] Speaker B: So, so when you say CDC positive. So was it just through regular western blot or how, how, how were you. Or ELISA test, you know, how did you show that it was positive?
[00:19:22] Speaker C: It was positive on western blot. Mm.
And was said I had the right bands.
[00:19:30] Speaker B: That's amazing because.
Yeah, that takes skill.
[00:19:34] Speaker C: I know, I know.
And I know it's not necessary. The diagnosis is clinical, but I like to just add that in as a bonus. I did have the right bands.
[00:19:46] Speaker B: That's incredible.
And then I want to kind of go into your healing journey a little bit, but I wanted to, just for people to understand, you know, when you say bedridden, what does that mean? What, what did your days look like and what kind of activity were you able to do, you know, throughout those couple of years?
[00:20:07] Speaker C: Really not much. I mostly was truly in bed napping or trying to nap. The hardest part was that my mind was in overdrive because I had all these neurological symptoms, so I couldn't actually fall asleep a lot of the time. But my Betty, my body was so physically exhausted that I needed that sleep, so I mostly was just lying in bed.
On some days, I would feel, well, for a couple hours. In the morning, I might be able to run an errand. On a really good day, I might be able to have lunch with someone, you know, for. For a couple hours.
But that was it. I really could not do much of anything. Any sort of physical activity just made me feel worse, even just walking to the mailbox. And I was an athlete, you know, I was someone who wanted to be a ski instructor. I had been a skier and a runner and loved being physically active. And I was a double major in college and I loved to write and always had been very, very high achieving academically, and that was the type of person I was. And then I was totally just truly bedridden, just, you know, unable to really do much of anything for two years.
[00:21:20] Speaker B: I mean, no wonder how this might have been so confusing to your parents. I mean, here they're used to seeing this high achieving, athletic, energetic individual, and now their heart must be breaking just seeing that individual just laying there in the bed and not having a solution and not knowing what to do.
[00:21:44] Speaker C: Exactly. Yeah, it was really frustrating and scary for all of us.
[00:21:49] Speaker B: And so what do you do when you lay there? Do you watch tv? Do you, you know, are you on your Computer or you literally just kind of laying there not being able to do anything.
[00:22:00] Speaker C: So often TV would rile up my neurological symptoms more. I had a really hard time with sensory overload, and so I would try to watch a little, but it would be difficult.
A lot of times I was on my computer. I would email with friends a lot. I've. Writing became very therapeutic for me at the time, even when it was just to stay connected, stay socially connected with others and to. I had a friend who would play word games with me back and forth on email just to, you know, to keep me engaged, keep my brain engaged. So mostly that is what I would do. I might, you know, read light magazines, but I had difficulties, difficulty reading a full book and concentrating on. On anything more than a. Than a very light story.
So. And that was really difficult of, you know, trying to figure out how to pass the time and also feeling like I needed to be productive. You know, I'd always been productive in my life, and I. And I felt the pressure to do that. And so I would try to do different things, like tutor. I would tutor kids in French, and sometimes that was okay, and sometimes it wasn't. To go do that for an hour at a time.
I would try to. I had connected with a school group and I was doing some online editing for. For some of the students there, and I could do that sometimes. So I was always trying, feeling like I needed to be productive and that I was wasting my time just by being in bed.
And so it was really hard for me, even though I was just bedridden, to, to mentally give my body the rest it needed because I felt like I was supposed to be doing something, doing something productive.
[00:23:41] Speaker B: Yeah, here you're young and. And it's kind of that a stage in your life where you build your career, you build your future, and, and, and. And here you are, you know, not being able to. To do anything.
I mean. Yeah, what a. What a mind game. Yeah, what a mind game.
What. What's. So now you. You have the diagnosis, you know, and God. God bless, you know, that finally, you know, Western blot showed something.
So what. What was the next step? I mean, so you are with a Lyme literate doctor, and they, they see that this is what it is, you know, what were the next steps in that process?
[00:24:26] Speaker C: So I started antibiotics. I was on oral antibiotics for three months, had terrible Herxheimer reactions. And the doctor would say, that's great news. That means the. That means the drugs are working. And now, now I understand that at the time it was like, what?
I'm feeling worse. So that's good, that's good news. But now I understand that, you know, my body was, that the antibiotics were killing off the bacteria faster than my body could eliminate them and it meant that they were working.
So we did the oral antibiotics for three months and then the doctor suggested moving to iv.
So we did IV for nine months.
And then this was many years ago when IV Rocephin was used, which can cause gallstones. And it did for me. So I had to have my gallbladder removed. And then we switched back to oral antibiotics and also did a lot of nutritional supplements and was still on the anti inflammatory diet, which I still am to this day.
But, but really it was, it was the antibiotics that, that were really working on the infections at that time.
[00:25:34] Speaker B: And so when you're going through this, I mean, did you ever doubt that what you were doing was not working because you were feeling worse?
[00:25:44] Speaker C: I definitely did, especially in the beginning.
But then symptoms started to get better and you know, the joint aches went away and I started to have a little bit more energy so I could see that it was working. And my doctor was really encouraging, you know, showing that, showing, you know, this is going to really take some time, but we are seeing improvement over time and I would start to have more good days and then when I would backtrack a little, it wouldn't be quite as far.
But certainly there were times when it just felt like, I don't know if this is right. I don't know if I'm in the, if I'm on the right track here. I don't know if I'm ever going to get better.
And it was my friends really who rallied around me and just believed in me and believed that I could get better and really encouraged me and kept the faith during that time.
[00:26:34] Speaker B: That's, that's amazing. And when, when did you, how long did it take before you start to feel that, you know, my joints are not as sore? I mean, when, when did you start to kind of see that? Yes, what I'm doing is making a difference.
[00:26:48] Speaker C: I mean, even when I was just on the oral antibiotics for the first three months, I started to, to see that difference.
And then switching to iv, I had, you know, bad Herxheimer at first, but then things started to get better. So within a, within a couple months I would say.
[00:27:03] Speaker B: And, and so with that, and you said a bunch of other kind of nutritional supplements and things, you know. Do you, do you remember kind of what that looked like as well, in addition to the anti inflammatory diet, I.
[00:27:16] Speaker C: Remember that and there still are, although they've changed over time. There were a number of different things to boost my immune system and which I often, I'll tell patients, I think it was that combination of things that really helped me. Looking at things holistically, we had to get at the, treating the actual infections, but I think just doing that would not have been enough.
Really had to look at how to get my body well and look at how to boost the immune system and where there might have been nutritional deficits and looking at those sorts of things and having the anti inflammatory diet, I think all of that combined was needed.
[00:28:01] Speaker B: And what does an anti inflammatory diet look like?
What is that?
[00:28:06] Speaker C: So for me, there's no gluten and no sugar, and for a lot of people it's no dairy. I drew the line at dairy because I love my cheese and.
But I know for a lot of people that it also, it also is, is no dairy. But for me, going off the gluten and sugar made a big difference and continues to make a big difference for me. So I have been on that diet for a couple of decades now.
[00:28:33] Speaker B: And do you, I mean, some people stay away from things like nightshades or, you know, high oxalates or high histamine foods as well? I mean, did any of that, you know, become a play a role as well, or. It was essentially staying away from gluten and sugar.
[00:28:50] Speaker C: For me, it was just staying away from gluten and sugar and then also really thinking about what good things I was putting into my body. So, like, what kind of nutrients was I putting in? Am I eating a colorful diet? Am I eating enough fruits and vegetables? Am I eating enough protein? Am I eating complex carbs?
So, and for me, I had a lot of low blood sugar reactions. So I learned that eating smaller meals, having protein and complex carbs at every meal and every snack was really important for me. So sort of just figuring out what worked well to keep my system going and also just thinking about what am I putting into my system that is helping my body to nourish itself and to heal rather than hurt it.
And so I also avoided alcohol and still do. There's that part too, and caffeine as well.
[00:29:39] Speaker B: And. And were you, I mean, when you're sick, I would assume that it was hard to be, you know, drinking alcohol when you can barely get out of bed. So I assume that was an easy one.
[00:29:50] Speaker C: That was an easy one, yes. And it, you know, in college when people would go out drinking, and I would have a drink or two and feel horrendous.
And I never understood that, you know, why it seemed to affect me so much more than it affected others. And now I can understand why.
[00:30:04] Speaker B: Yeah, absolutely. And so you did then the oral antibiotic for, like, three months, and then the IV for nine months. So where were you at at the end of those IV antibiotics? Did you feel completely well, or what state were you in at that time?
[00:30:22] Speaker C: I did not feel completely well, but I felt significantly better. I had good energy in the mornings. I needed to take a nap in the afternoon. But I had started physical therapy. I was beginning to exercise. I was able to write.
I was just able to read more. Just was able to do a lot more.
And my doctor declared me in remission. And I really didn't understand at the time that Lyme was a relapsing illness. And I was really feeling like, okay, great, we're done. We did this. You know, I am feeling better, not completely better. I get it. I'm not skiing yet, you know, but I'm working towards it, and I'm done with this part of, you know, stopping my life. And I'm going to get back to my life. I kept using that word back. I can't wait to get back to life. I can't wait to get back on track. I can't wait to get back to work.
And when remission was declared, I threw a big back to life party and I moved off to Vermont because I wanted to be in the skiing lifestyle again. And I took an editorial assistant job and spoiler alert, dove in way too fast, stopped all treatment. So I had no defenses in my body and just tried to go right back to the life that I had previously been living and everything. Relapsed within three months of that.
And it was another couple of years. I went fully back to zero, had to go back to Connecticut with my parents.
And then it was another couple years on oral antibiotics and really changing my mindset and realizing what it is to have a chronic illness. And I can't control what the infections are doing in my body, but I can control external factors that might impact them. So I really had to start to think about how can I pace myself?
What limitations do I have? How can I respect them? How can I bring chronic illness forward with me in my life rather than trying to stuff it in the closet and going back to my old life? And it was that, that reframing that I think really helped me to truly start to get well. And I have Been in remission since that time now over a decade, and have had minor flares here and there, but have overall just been getting better and better and better and now feel that I'm at a point in my life where I know what I need to do to pace myself.
I do still take a nap every afternoon. It's just what my body needs to keep going. But besides that and you know, taking medications and supplements and sticking to my diet and just, you know, sticking within my own needs, I feel like I'm, I'm living a very healthy, normal life and I don't think about feeling sick anymore.
[00:33:19] Speaker B: I love that. Love that. So when you said going back to square zero, I mean, from the very beginning, does that mean bedridden again for two more, two more years?
[00:33:30] Speaker C: I did, yes.
And it was devastating. That was the, the lowest, absolute lowest point for me. I was feeling suicidal at that point, at the, at the very point of relapse and having to give up my life in Vermont because I just felt like I can't do this again. I already did it.
And my doctor really wanted to put me back on iv and I drew the line there because to me it felt like that would be truly going back to zero. And so I just said I really want to try on oral antibiotics. And he put a stake in the ground for a certain amount of time and said, if you're not better or starting to get better on the orals, we're really going to have to go back on iv. And I did start to get better on the orals and I did take antidepressants and did go back to seeing a counselor and just started working with adjunct therapies and again with just reframing my life. And my parents came to a much greater understanding of tick borne illness at that time. Time. So I also had a different support which made all the difference in my healing.
[00:34:38] Speaker B: Yeah, I can imagine that. Yeah. I mean, I, I, I can't even imagine. I mean, here, you, you fought so hard and then finally you, you, you taste that freedom and you taste, you know, I, I have my life back. I have energy and, and then all of a sudden just have it pulled away. I mean, it's, it's, it's almost, I mean, it is worse, you know, from my point of view that, you know, tasting it and then having it ripped away again, I mean, that, that must, you know, must be horrible. I mean. Yeah.
So how, and, and you went back to the same, same practitioner, I would assume, because they knew your case and they knew what, what had worked in the past?
[00:35:22] Speaker C: Yes.
[00:35:23] Speaker B: And what were their comments in regards to? That, you know, you'd stopped everything and then went back to normal life.
They say, you know, you, you dumb girl, you know, why, why did you do this?
[00:35:36] Speaker C: No, my doctor was, was very, I was saying that to myself and, and he was coming in saying, this could have happened if you were just lying in a hammock on a beach. You don't know what these infections are going to do. You're young, you wanted to get back to your life, you were trying to just live.
And. And then this hit you again, you know, and it's not, it's not your fault is what he needed to keep telling me, you know, and I also asked him, like, do, do you think I'm just crazy? Do you think it's in my head? Do you think there's something else going on? And he said, no. If you were suddenly showing different symptoms than what you've shown, you know, before or, you know, symptoms that are not related to tick borne illness, he said, but, but we're good looking at what we've looked at before and you had no defenses in your system.
And, you know, so he really validated what I was going through and again helped me to reframe my own thinking, which was, I did this to myself, this is my fault.
And he was saying, you were doing the best you could with what you had and now you have more information. And now he had more information too, of, okay, we can't just pull the, we can't just pull the medication away.
And we all recognize, like, okay, can't dive right back in, need to take some baby steps here.
So that was a learning curve for me, for my doctor, for my family, for everybody involved.
[00:37:03] Speaker B: And feeling suicidal. I mean, that is a big aspect for a lot of people battling Lyme just because it just pulls your life away from you and you don't get to experience.
You're essentially just there in pain, exhausted. And I mean, how did you. Was it mostly just counselor and then medication or can you talk a little bit more about that? Because there's a lot of people struggling with that and I would love for them not to feel kind of isolated in that feeling.
[00:37:39] Speaker C: Right. I really want to give people hope and inspiration too that it can get better. And I know how much the desperation of feeling that it can't and feeling like this is never going to get better.
And, you know, at the time I was feeling that way. I was not sleeping. I had been up for days on end So I literally was not in my right mind. And when I did sleep, I had hallucinogenic nightmares.
So I just, you know, I first just want to say to people that I know the desperation of that, you know, that feeling to be just. And, and what I, I write about this in the book. I, you know, I got to this point where I called my best friend and I said, I don't want to die, but I don't, I can't live like this anymore. And that's what, that's what it felt like.
And she really talked me off the ledge. So, you know, I feel very lucky that I had a good support system of friends that for, for my parents there were different things that happened that I can talk about that, you know, helped their understanding of tick borne illness and so helped me to get out of that and having a good counselor, that was really important.
And getting on the right antidepressant medication, you know, my doctor, I was just perseverating on. This is my fault. I did this to myself. I can't, you know, and weeping all the time. And so he said, you know, we need to get you on, on something that's going to boost your serotonin and you know, stabilize you. And it, it made a huge difference. So I really want to advocate for that for people too, to not be, not feel ashamed about medication that, you know, that that medication is meant to help you chemically in the brain. And it made a good, big difference for me.
And just, you know, again, having the right support system, having the right medications, having a good doctor and just having some sort of faith that it, that it really can get better. And I just really hope that people can see that. In my own story, just, you know, I was, I was literally on the floor at that, at that low point and life has gotten better than I ever could have possibly imagined.
And I'm so, so grateful that I hung on. And I just really want to encourage other people, no matter how dark it seems to hold on because there is light.
[00:40:00] Speaker B: I love that. I love that. And now when, and you said it took another couple of years and to get back on, you know, somewhat normal.
[00:40:11] Speaker C: It did. And then I, the important thing that I realized is that I need to take baby steps here. So instead of, you know, taking off to Vermont and diving right back into work, I stayed in Connecticut and I moved into my own apartment close to my parents so that, you know, I could take a baby step of independent living. I started volunteering first. Even though I wasn't making any Money. And I wanted to. And I wanted to be productive and.
But I. I needed to volunteer to just see how that worked in my schedule and then was slowly able to take on freelance writing jobs. So I really needed to. To build myself up. You know, I went back to physical therapy. I did that very slowly. I did other adjunct therapies and really started to think about illnesses. Taking care of my illness is my number one job, and I need to do that in order to be able to live these other parts of my life. And so I. I stayed in Connecticut, I think, for another three years, living on my own there, working up to, you know, the things that I could do until it got to a point that I was pretty bored with my new life, which was great. That, you know, what. What else can I be doing here?
And this is a great story I write about in the book. I went to the library one day to. To check out a movie that someone had recommended. And this is back in the day when we got paper call slips where what you had checked out was. Was on your call slip. And I was given the wrong person's call slip. I was given someone else's call slip. And on their call slip was the book Life disrupted dealing with chronic illness in your 20s and 30s by Lori Edwards.
And I was like, what is this book? How has no one ever told me about this?
And, you know, she wrote about all the things I had been dealing with. Losing and regaining your independence, dealing with family relations, dealing with. With relationships, dealing with, you know, not being able to support yourself financially and wanting to. And she seemed just like me, even though she had a totally different chronic illness.
And she had gone to grad school for creative writing and written this book and was teaching creative writing and living in Boston. And I thought, well, if she can do that with chronic illness, maybe I can too.
So I reached out to her and, you know, thanked her, told her how much her book had meant to me, and she wrote back and said, I'm so glad you reached out to me because I'm actually looking for a Lyme patient to interview for my next book.
So she ended up interviewing me for a chapter in her next book, in the Kingdom of the Sick. And I in turn, asked her about her graduate school experience, which was at Emerson in Boston. And long story short, I ended up going to Emerson, successfully moving to Boston, getting all the right support systems in place, successfully getting through grad school, and became a writer, wrote my. Wrote my book, started writing for the Global Lime alliance, and now teach creative writing and feel that I have ended up doing exactly what I was meant to be doing, and I'm back on my skis. I should add.
[00:43:15] Speaker B: I love that.
What a cool story. What a cool.
[00:43:19] Speaker C: So.
[00:43:22] Speaker B: When did you decide to write your book? And why did you feel that that book needed to be written?
[00:43:29] Speaker C: Those are great questions. So at the time that I was after my relapse, as I was, you know, beginning to get better again, I had always loved to write and saw how therapeutic it was, as I said, you know, just to be emailing with friends and writing out stories like that. And so at the time, actually, I didn't yet feel ready to write my illness story because I was still living it.
But I started emailing friends just about fun experiences we had had in college when studying abroad, and those started to come together into anecdotes that eventually came together in a book. And so I used writing in that way to write about a more fun time, a lighter time, a reminder to myself that I had once been a very vibrant and lively person who traveled around Europe.
And so that was what I wrote about when I was at my sickest. When I went to graduate school and moved to Boston and started a new life there is when I was able to start writing about my illness journey, because I had a life outside of it.
I wasn't just in bed dealing with being sick. I was looking at other people's writing, learning their stories.
And so that gave me the community and also the stage space to be able to do that.
And I realized how therapeutic it was for me to process through my experience in writing. But as I did, that also started to realize that my story could be helpful to others, you know, could be validating to others, could give inspiration to others.
What?
So I did start writing the book in graduate school. I knew I wanted to do that. And then there was an OP ed one day in the Boston Globe that gave some misinformation about Lyme disease. And I happened to be taking a class on OP EDS at the time. So I sat down that night and I penned an OP ed back with and that got published. And that was really what started off my journey as a Lyme writer and recognizing that I could use my voice as an advocate and stand up for other patients and to elevate the patient experience, to make that part of the narrative that is out in the world and correct some misinformation based on the lived patient experience that really encouraged me to continue writing and to keep going with the book.
[00:45:52] Speaker B: I love that. What kind of impact have you seen in people that have read your book or your columns, you know, what kind of impact have you seen, feedback, etc.
[00:46:07] Speaker C: So the best compliment I get from people is to say, wow, I feel like you're talking, like you're talking for me, you know, that I feel seen. This is exactly what I have gone through. I didn't realize someone else could do that or had gone through that or could put that into words. So that's the very best feedback I can, I can get, you know, and have gotten is that people feel seen, that they feel validated, they feel represented in the writing. They feel heard. Heard. The dedication of my book is for the patients who need to be heard. I believe you.
And, and so to be able to give that to others has been really important for me. But other great feedback I've gotten from people who don't have chronic illness is to say how they've really gained a new understanding of chronic illness and they've gained a new understanding of tick borne illness and they're going to become much more tick aware and they're going to be more appreciative of people with invisible illnesses and chronic illnesses and, and not as judgmental. And so that's been great to hear as well.
How the lay public has learned from, from my story, from, from other patients stories. And, and so that feels really good as well.
[00:47:18] Speaker B: I mean, what a blessing if, if this book would have existed, you know, for your parents when you were initially going through this. I mean, what I, I mean how it would have helped them to understand what you're dealing with and maybe it would have changed kind of how they felt about things.
[00:47:40] Speaker C: Yes, I think so. Yes. And for my mom, a big thing was she actually eventually read Coping with Lyme Disease by Kenneth Ligner and that really helped her to understand what, you know, what Lyme disease is. She saw other patients who looked like me, who had went through something similar to me. She read Laurie Edwards book and that was helpful. So I also saw there how much writing can help help people to understand.
But yes, I say to my creative writing students, you know, write the book that you need that you can't find out there that would have been helpful for you and you know, put that out into the world.
[00:48:19] Speaker B: I love that.
Well, Jennifer, this, this was amazing.
What a, what a story, what a journey, what a fighter you are. I mean, and, and that's the thing. Yeah. A fighter is not somebody that's always standing up, they're strong. It's somebody that's beaten down a lot of times and they're still coming up and then ending up victorious and and you truly that so and thank you for bringing this information out to the world.
[00:48:49] Speaker C: Thank you so much. Thank you for having me.
[00:48:51] Speaker B: Thanks so much.
[00:49:00] Speaker A: The Information this podcast is for educational purposes only and is not designed to diagnose or treat any disease. I hope this podcast impacted you as it did me. Please subscribe subscribe so that you can be notified when new episodes are released. There are some excellent shows coming up that you do not want to miss. If you're enjoying these podcasts, please take a moment to write a review. And please don't keep this information to yourself. Share them with your family and friends. You never know what piece of information that will transform their lives. For past episodes and powerful information on how to conquer lime, go to Integrative Lime Solutions and an Additional powerful resource, lymestream.com for Lyme support and group discussions. Joint Lyme Conquerors Mentoring Lyme warriors on Facebook. If you'd like to know more about the cutting edge integrative Lyme therapies my center offers, please visit thecarlfieldcenter.com thank you for spending this time with us and I hope to see you at our next episode of Integrative lyme Solutions with Dr. Karl Feld.
