Garreth Broesche talks chronic inflammatory response syndrome (CIRS) & expensive and ineffective treatment for the lyme he didn’t have.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
I have a few quick notes before we get started:
First, I am still behind on transcripts, but I’m making progress so I haven’t slowed down the publication schedule just yet.
Second, I realized that I haven’t said this explicitly on the show in a while, but I just want to acknowledge that I recognize that a lot of the stories I’ve shared so far have come from cis white women.
I would love to share more stories from people of color and non-cis folx (and I recognize that those groups aren’t mutually exclusive, but grammar is failing me right now). If you’ve been thinking about sharing your story and want to know more about the process, head to noendinsight.co/share-your-story.
Third, somebody nominated the podcast for a WEGO Health Award, so thank you, mystery nominator! I think that there’s a lot to be said about advocacy awards that are sponsored by healthcare corporations, but I’m also pretty excited for the chance to get the podcast in front of new people.
Now let’s get to the show!
Today I’m talking to Garreth Broesche about chronic inflammatory response syndrome, which is usually abbreviated as CIRS. He talks about the cost of healthcare and the impact that chronic illness has had on his career, plus takes us down some of the treatment dead ends he’s explored along the way.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: So I like to get started by saying: were you healthy as a kid?
Garreth: Yeah, I was really healthy as a kid. We can probably just really fly through my childhood. I mean I had some ear infections and some sinus issues and a headache here and there, but never any hospitalizations, never any mystery illnesses. Oh, I had mono when I was in college, but even that barely registered on my radar. I remember being tired for like a month, but I don’t even think it took me out of action at all. So it was pretty mild. And from roughly 25 to 35-ish, I was a professional musician and I was on tour for some of those years and that’s a really hard life. And my body held up just fine. So yeah, I was really, really healthy almost my whole life. I guess we can fast forward to… Well, there was a really super traumatic event where I got sick and I haven’t been better since. And I think that’s kind of different than most chronic illness people. Like usually there’s kind of a long slide into it or like in your case you’ve got a lot of weird things as a kid. I guess we’ll get to that, but in retrospect I’m thinking that there were some warning signs. So in 2008 – I would have been 35 – my then-girlfriend, now-wife and I moved to Madison, Wisconsin for me to work on a PhD and things started kind of going downhill there, healthwise. We had an awesome time in Madison and we really miss it and it was probably the best years of our lives, at least for me. But I started sleeping really poorly, just waking up constantly, and that got to be really bad at times.
Brianne: And that would be… So we’re at the beginning of everything. So right now, things are pretty much fine, you’re in school, but your sleep starts to suffer with no explanation, really.
Garreth: Right. And my sleep starts to suffer and I had some GI issues, basically chronic diarrhea. So that kinda went on for the four or five years we were in Madison. And you know how doctors are, they’re wrong more than they’re right. Nobody was able to figure it out with the sleeping issue. It was just like, “Oh, you’re probably stressed from graduate school, you’ll be better when you’re done with your PhD, blah, blah, blah.”
Brianne: And were you given anything to try beyond stress management, or did anyone have any… Five years is a long time to not be sleeping very well. And I know you kind of get used to this stuff, but also probably go through spurts of experimenting.
Garreth: I discovered that lorazepam really helps with sleep, I guess it was kind of the only pill that really helps me to sleep. But you have to be really careful how much you take of that. So, you can’t do it every night. And I was also drinking a lot. And not a lot a lot, but you know…
Brianne: Being a grad student.
Garreth: Yeah. Being a grad student and having a good time. I stopped eating gluten at some point, maybe 2012ish. And I think it helped a little bit with just my general mood and my stomach, but didn’t really help with the sleep. So I guess we’ll fast forward to 2013. So again, basically really healthy, nothing out of the ordinary. I mean, I rarely got the flu, I rarely got anything. I never missed work for any reason. So in the summer of 2013, kind of out of the blue, I get this email from the University of Houston, which happens to be my hometown and it’s kind of a long story, but my mom got my CV to someone in the dance department who got it to someone in the music department at the University of Houston and they kind of popped up with an emergency need for an adjunct. And I dunno how much you or your listeners know about academia, but it’s kind of its own thing and the job market in my field is just really bad. So getting an opportunity to teach was just enormous. So there was no question at all that I was going to accept this job. But I got the job like six weeks before the semester started and we lived in Madison, so just like pack up, move across the country, total chaos. Try to get ready to teach, for the first time being an actual professor. And I did it. My wife and I got to Houston and I got ready and I had just an amazing time teaching that year. I just absolutely loved it. So fall 2013, spring 2014, I just absolutely loved the students and loved teaching and it just felt really awesome to be in charge and it was just awesome. But at the same time I was just so stressed and so overextended. I mean my course load was really big and the pay is terrible and no health benefits.
Brianne: As an adjunct specifically?
Garreth: As an adjunct. Yeah. And this was before the Affordable Care Act had come into place. So, you know, that’s stressful. Also trying to finish my dissertation, finish my phd while I’m teaching. I mean, I’m not exaggerating to say I probably worked 60 hours a week. I’ve kind of always known this about myself, but I’m realizing how kind of important this is and how damaging it is. I’ve just always been really hard on myself and blaming myself when it’s the job market, you know. I have an older brother who has a couple of kids that are just awesome, my niece and nephew. And I remember, I guess it was around the Christmas table this past year, someone asked me for some avuncular—is that the right word for an uncle? I think it is, avuncular—advice for life or something. And I was real snarky. I was like, “Well, basically being good looking is the key to life.” And I was thinking about that and I wish I hadn’t been so snarky. I wish that I had said the most important thing in life is to be kind to yourself. And it’s taken me four and a half years of being sick to realize that. But I was not doing that before I got sick, even though I was just working so hard and just so overextended. I still insisted on going to the gym and swimming a mile, like five days a week. And I wasn’t doing that for the joy of exercise, I was doing it to kind of like… I could almost punish myself in a way, like push myself so hard. And I don’t know why I was like that, you know? And I don’t think I will be like that again whenever I get better. But, so this is all just to say that I think my mental frame was not super healthy around this time. So in the summer of 2014 I just felt like something was wrong. I woke up in the morning and I felt just horribly depressed and sad and just so stressed out. So anyway, we fast forward to the fall of 2014 and classes start again.
Brianne: Was this your second year of teaching?
Garreth: Yeah. My second year at U of H. They renewed my little adjunct contract and I had actually more classes at this time than I had the year before. And again, I just really, really love the teaching and love the interaction with the students and all that, but just super stressed out. And then I guess we get to “the event”. So October 24th, 2014, I remember that I got a paper into the national music theory conference, which probably to most of the listeners is like, “Oh my god, big deal.” But it is kind of a big deal if you’re trying to get a job as a music theorist, it’s kind of one of those rites of passage. So I got this paper into the national conference and I think it was like November 2nd or 3rd is when that was going to happen in Milwaukee. And so I was going to give the paper at U of H kind of as practice. October 24th, 2014, that’s the day, man. So as I said, I’d been having a lot of headaches leading up to that, like kind of severe, but I just kept working and kept pushing and I remember that day pretty distinctly. I was giving my paper at like three in the afternoon or something. And I hardly ever drink coke, but I remember I got a coke from a machine in the hopes that the caffeine would help with my headache. I just remember really not feeling well that day, just kind of a bad headache. So I give my paper and that’s all fine. And I go back up to my office, which was actually a practice room because I’m an adjunct. And maybe 45 minutes later I thought, “I don’t feel right. I’m going to head home.” And it’s hard to describe how I felt. I just, I didn’t feel right. Like I was kind of clammy and sweaty and I knew something was wrong.
Brianne: Like flu-like?
Garreth: Uhhhh, just really, really hard to describe. This is one of those things where I’ve had so many people ask me like, “Well, what are the details of how you felt that day?” And like, I didn’t take notes because I didn’t know it was going to be a lifechanging event. So I got in the car and drove home and I think I got home about five or something and my wife was like, “You don’t look well, you should go lie down.” So I did and within like an hour, this headache just blossomed into this… It’s just like a bomb went off in my head. It was just incredible. And I’d never experienced pain like this before, never knew it could exist. It just felt like someone was stabbing my brain with a sword made of ice or something, you know, it was just awful.
Brianne: And was it anywhere besides your head? Was it head focused, like migrainey almost?
Garreth: Yeah, it was really head focused and certainly migraine was one of my early diagnoses. I’d never had a migraine before, so it would seem odd that you would develop that at age 41, but I guess it happens. So this is an insane headache that went on for like three or four days. I could barely do anything but just lay in bed for several days, but I think I got back to work like the next week, on Thursday or something. And you know, even more work now piling up and more stress. And I just thought, “Okay, I had a bad headache, it’s going to go away, you know headaches, they come and they go away.” So it took maybe a week or two for the headache to go away. And I did have some sensitivity in my eyes to light. I mean, I’m a big baseball fan and I remember that year was the year the Kansas City Royals won the world series and I remember sort of watching the world series but the TV was too painful to look at. So I just kinda lay down with my eyes closed and listen to it as I watched, you know?
Brianne: Yeah. Like old school baseball on the radio kind of.
Garreth:
[laughs]
Yeah, exactly. So the headache eventually went away. But then it started to be replaced by this weird dizzy feeling that I have struggled to describe for years because I guess what I’d say about it is that we have words for things that are within the normal range of human experience. Like if you’re experiencing something that you’ve never felt before, what words do you put to it? I call it dizziness, but it’s not really accurate.
Brianne: Right.
Garreth: It also kind of feels like, I don’t know if you get car sick, but I’ve always gotten car sick if I try to read in the car or something. And you get this really fuzzy, just really uncomfortable feeling. So it’s kinda like that, but without a stomach component to it.
Brianne: I think about that with vertigo sometimes. Where vertigo is a word that is associated with dizziness and the feeling that I have had that I’ve called vertigo… Is this what people mean when they talk about it or is it a totally different thing? It’s like, I feel kind of like I’m on a boat. Like I can’t walk straight. We’re kind of guessing when they’re not a part of our everyday experience. Words are hard with chronic illness.
Garreth: Yeah, for sure. And it’s not vertigo because the room is not moving and I’m not moving within the room. It’s neither one of those things. So anyway, since the dizziness, it was like, for awhile I either had a really severe headache or I was dizzy, like on any given day. And I kind of preferred the headache because that’s the more normal human experience. So anyway, just kept working, kept pushing and just everyday hoping I’d wake up and I’d be fine. And I remember the end of 2014, early 2015, I had a few days that kind of seemed fine. Like I remember Christmas Day 2014, I more or less felt okay. A couple of days in January I kind of felt okay. But then eventually it just kind of settled in and it was just this weird dizzy feeling. And you know, obviously this is when I started seeing doctor after doctor and incorrect diagnosis after incorrect diagnosis. I’m sure a lot of your listeners had been through this. Migraine, vestibular migraine. I tried all these migraine diets, tried all kinds of nasty drugs that are supposed to help. I had four MRIs, didn’t show anything. All kinds of blood tests. Nobody could figure out what it is. So that goes on for most of 2015 just kind of trying migraine drugs and I did vestibular rehabilitation therapy, these head movements that you do. And I guess I’m a pretty disciplined guy, like when I have a goal, when I want to achieve something, I’m pretty disciplined about it. And so if I had a protocol, I’ll be damned if I didn’t follow it. So if I’m supposed to do the head movements for an hour and a half a day, I did it, you know?
Brianne: Yeah. That wasn’t prohibitive for you to have something that was intensive. And were you working still at this point or had you been taking some time off? How was that going?
Garreth: No, I’m still working. I mean obviously my performance started to slip a little bit and my attitude started to slip and the energy I was putting off, I’m sure it wasn’t super positive. But I kept my full course load the next spring. Four classes that semester. And I did finish my dissertation and defended my dissertation and all that stuff all while being sick. And then I think it was the next year, so fall of 2015. I think I cut back on my classes a little bit. I went from like four to three a semester. So I don’t know if you have any questions about that.
Brianne: I have one thing that I just I thought of to remember, which was you mentioned much earlier having had GI problems while you had some other stuff. And had those kind of resolved or was that another low burning issue, basically?
Garreth: I’d call that still a low burning issue. It had never really been resolved. And the sleep problem is still persisting too.
Brianne: So it’s like, perhaps unrelated things. Certainly unrelated body systems in the way that you maybe feel them, but they’re starting to layer in. Okay.
Garreth: Yeah, for sure. So I guess that gets us through 2015, just everyday hoping I’ll wake up and feel better and then not feeling better. Just like, what the hell is wrong with me? But just continuing to work as much as I had. But my social circle starts to shrink at this point. It’s like people would invite us out. I remember I had this great plan to go to karaoke with some friends and I was really excited about it and I was like, “Well let’s just push this back a week. I’m sure I’ll be better next week.” And someone invited us to dinner and we’ll say, “No, let’s try next weekend.” Just always expecting for things to just kind of magically clear up and get better, you know? I’ve spent 40 years feeling normal. Why would I not feel normal again?
Brianne: And why wouldn’t you recover when you always have before?
Garreth: Yeah, exactly. But after a while people will kind of stop calling you, if you keep saying no to social events. So we get to January of 2016, and I can’t even remember why I went to see this doctor. I guess I just heard she had a great reputation and I’m not going to say her name because she treats lyme basically against the law in Texas and so I don’t want to get her in trouble. I’ll say she’s Dr. S. So I went and saw Dr. S In January and within like 15 minutes of talking to me she said, “Well, have you been tested for lyme?” And I said, “Yeah, I’ve definitely been tested for lyme.” She said, “Well, show me the tests.” And I did. And she said, “That’s not sufficient to test for lyme. So I’m going to do a blood draw today, we’re going to do a bunch of tests. And I think you have lyme.” It’s very endemic in Wisconsin. I never had a rash, never was aware of a tick bite. I’m not particularly outdoorsy, but you know, that doesn’t mean I don’t have lyme.
Brianne: Right.
Garreth: So within about a week or two, whatever, I get a call from her office one morning and they said, “You have lyme disease. This is a clear diagnosis.” You know, 100% certainty you have lyme. And I remember that morning distinctly, I’m just so thrilled. I’m so happy. I’m just like, “Oh my god, I have a diagnosis.” Like finally. And they made it seem like, “Oh, you just take two or four weeks of antibiotics and you’re going to start feeling better.” And you know, boy was I wrong about lyme disease.
Brianne: It is so complicated. [laughs]
Garreth: It is so complicated. The politics around it are super fraught, like the CDC here in America doesn’t recognize chronic lyme as a real disease. So this is why Dr. S could get in trouble for treating it. And this is why she basically lies on the forms that she submits to to insurance companies so that we can get medications covered.
Brianne: Yeah, to get some stuff covered.
Garreth: Yeah. As my wife said a few times, “She may go to jail, but she’s not going to hell.” You know, she’s trying to help her patients.
Brianne: Yeah. Have you watched the documentary Under Our Skin about lyme?
Garreth: I have, yeah.
Brianne: Just out of curiosity, I don’t need to talk about it specifically, but that one piece of it where there’s a bunch of practitioners and some of them lose their license over the course of it and you’re like, “Ohhh jeez, that’s really what’s happening.” It’s so tough.
Garreth: Well, at this point… Like for awhile I was just really defensive about like, “Oh, chronic lyme. It’s a real thing. It’s a real thing!” But now I’m not sure it is, like maybe the people that deny chronic lyme are actually correct because how many people do you and I know who’ve been treated for chronic lyme who just never get better?
Brianne: Yes.
Garreth: You know? I mean, I know people who take antibiotics for five years and don’t get better. So maybe the diagnosis is wrong. And it’s not chronic lyme.
Brianne: Yeah. And I think what makes me so frustrated in the middle of that debate, because that’s kind of where I am too. Like I don’t actually feel like I’m on a side because on the one hand I’ve talked to lots of people who have at one point been diagnosed with lyme and are either getting treated or no longer getting treated or whatever. And then on the other side, I’ve read so much stuff with people being like. “Chronic lyme isn’t real. There is post-treatment lyme.” All of those arguments that we don’t need to get into on either side. Sometimes it feels like this argument misses the point. Because from my perspective, most of the people who are being treated for chronic lyme are definitely sick. And so it feels like what’s missing on that other side of the argument, that chronic lyme doesn’t exist – and maybe this is just what I’m reading – is it feels like a lot of people who are like, “Those people are malingering. They are faking.” Okay. You don’t have a better explanation! If you think that chronic lyme isn’t it, then look for a better explanation. That would be really helpful.
Garreth: Right.
Brianne: So there’s a rant that I have.
Garreth: Yeah, I totally agree with you on that. And you know, I’ve been there. I mean, no one’s ever said it to my face, but I think people question me. Am I just making this up? Is it all in my head? Have I created this as some really fucked up way to account for my own failures in life or something? Was I just so hard on myself that I made this happen? I’ve been saying for years that something is wrong with me and just because 17 doctors haven’t figured it out doesn’t mean that it’s not there. Doctors are not infallible. You know, you’ve got to take everything they say with a grain of salt and you have to do your own research and you have to be your own advocate. So I’m getting treated, so I start taking lots of antibiotics and even had a picc line for awhile to get IV antibiotics. And you know, this is kind of interesting. I want to tell a brief story about my wife. She’s nine years younger than I am. And a month or two before her 30th birthday, so this would’ve been 2012 and we were still in Madison. Her knees started to swell up really badly, and to a lesser extent, her wrist and hands. She was in a lot of pain and it was really obviously putting a damper on her life. This is when we were still in Wisconsin. They tested her for lyme. You know, it’s pretty frustrating that you’re a doctor in Wisconsin where there’s a ton of lyme and you don’t actually know how to test for it. They ended up coming up with the diagnosis of seronegative rheumatoid arthritis. Which was a bullshit diagnosis. So she was doing enbrel and I can’t remember the name of the other ones, but she got this pen in the mail and stabs herself with this arthritis medication. And she kept doing this for a few years into me being sick. And I told Dr. S about this and she’s like, “Oh, you’ve got to get her in here. She probably has lyme too.” And so my wife Lauren went in and got tested and, and Dr. S says, “Yes, you have lyme and we’re going to put you on antibiotics.” So my wife gets antibiotics and she did like four weeks of doxy and her swelling goes away and it’s gone forever, it’s never come back. So it seems like Dr. S was correct about that and my wife did have lyme.
Brianne: Yeah. Or something! Something treatable by doxy.
Garreth: Yes! Something treatable by doxy, right.
Brianne: So it’s not autoimmune.
Garreth: Yeah, exactly. So that kind of leads me to think that I do have lyme or I did have lyme because it can be sexually transmitted. And so maybe that actually was there or is there, I don’t know. It’d just mine’s not reacting to antibiotics. Eventually I got a little frustrated with Dr S’s office. She’s a doctor sees a lot of people and she wants to help a lot of people, so her office is just kind of hard to deal with. So I switched to a different doctor who I’ll call Dr. W for the same reasons, who basically also treats lyme the same way. But I just felt like I’d get more personal attention from him. And so I started working with him. And I guess long story short, I did massive amounts of antibiotics for about a year, late 2015 to early 2016.
Brianne: Okay. And IV, it sounds like, if you had to picc line.
Garreth: I only had the picc line for like six weeks, which seems weird. Why go through the trouble if you’re only gonna have it for that long? It was mostly oral. And also some dietary things and some antivirals. Just a lot of pills.
Brianne: Were co-infections a part of it? Do you know, like had you tested positive for babesia or bartonella or were they treating that in the mix as well?
Garreth: Bartonella yeah, mostly bartonella. In fact, one of my symptoms that I had mentioned was I had a lot of jaw pain. And that’s that since been resolved, turns out it was TMJ. So that’s good. At least I don’t have jaw pain anymore after I got treated for that. But they said that’s a bartonella symptom, but it turns out it was TMJ. It was basically, why am I blanking on the doctor’s name? Who’s in New York?
Brianne: Horowitz?
Garreth: Yeah, Horowitz. Yeah. So Dr. W is kind of a disciple of Horowitz. It’s basically that approach. Yeah.
Brianne: And that, to add an extra plug, Horowitz wrote a book called Why Can’t I Get Better? Which is a really good reference book, I have it somewhere, that’s why I can remember. It’s somewhere near me right now. And it’s incredibly helpful for just understanding what people are talking about, frankly, with all the layers. Because his MSIDS model. Multi-System Inflammatory…? Anyway, so that’s Horowitz. As an aside.
Garreth: Yeah. So I don’t know, we’re kind of fast forwarding here, but I don’t know if you have any questions about this period. I mean, I’m still working. I ended up teaching for four years at U of H, three of which I was really sick. And I’m still applying for jobs. I had one campus interview at this school in Ohio that like, if my life had been different it would’ve been an amazing job for me. I would have loved to have gotten that job and been working there. It breaks my heart that I wasn’t able to. I didn’t get the job and you know, I think I would have if I hadn’t been sick.
Brianne: Right, it impacts your ability to show up.
Garreth: I wasn’t telling people that I was sick, but I think you could just tell something was off with me, you know.
Brianne: Yeah. It impacts your enthusiasm and your cognitive function and all of these things that I feel like would be hard to fake on a job interview.
Garreth: Yeah, for sure. And the job interviews for academia are really gruelling. It’s like 12 hours of interviews and teaching classes, so.
Brianne: And I feel like a lot of panels. I am not in academia, but I feel like when I hear about it, it seems to be a lot of like five person panel interviews and stuff.
Garreth: Yeah, for sure. You’re sitting on one side of the table and five people are on the other side peppering you with questions. So yeah. So I guess that didn’t go well. I actually thought it went great and I thought I was going to get the job offer, but I didn’t. So eventually I made the decision that I just couldn’t keep teaching. I wasn’t performing as well as I wanted to and I just kept cutting back my classes. And the way it works at U of H was it was $3,000 per course. And it’s just not meaningful money. You can’t work enough when you’re sick for that to matter. So I guess we’re up to middle of 2016 now. So we’re still treating Lyme. I decided to try the naturopathic approach. And I heard on your episode that your sister’s a naturopath so… All apologies. I’m not very highoon naturopaths right now.
Brianne: That’s fine with me!
Garreth: So I’m sure a lot of people listening have heard of Dr. Klinghardt, well known for his naturopathic approach to treating lyme. So I booked two weeks at one of his clinics, Sophia in Seattle. And my wife and I headed up there in July of 2016. And I don’t have very nice things to say about Sophia. I ended up working with them for about a year and I’ve done the math and that year I spent $100,000 on treatments and it did not help at all. And I think looking back, I don’t think they ever had any clue what my actual diagnosis was. They just kind of treated me how they treat everyone. You know, they kind of have a menu of treatments and a lot of it’s very expensive and that’s just what they do.
Brianne: Yep.
Garreth: So this is the point in time where money starts just absolutely flying out the door. And I’m very grateful and very fortunate that my parents have means and their generosity is just absolutely bottomless and they just wanted me to get better. I’m getting emotional here because I’m just so grateful for what they’ve done for me, helping my wife and I. Like literally we would not have food on our plate and a roof over our heads, much less be able to treat if my parents were not so generous. And this is not to say… my wife works, she works really hard. She works a lot. She works for an estate sale company. She doesn’t make a lot of money. When you’re doing these kinds of treatments, even if I was working full time as an academic it wouldn’t be enough money.
Brianne: Right. And most of it, especially when you’re talking about that kind of stuff, but anything with chronic lyme really in this whole field is probably not going to be covered by insurance or barely going to be covered by insurance.
Garreth: Definitely not.
Brianne: Makes it even easier, kind of frankly, for them to price gouge. Like everything is so expensive.
Garreth: Yeah. So like, talking to a doctor at Sophia is like $350 an hour. I think Klinghardt himself is like $800 an hour or something if you actually want to see him. And then it’s just all these little things add up, you know, the supplements and tinctures and driving across Houston to get an IV that costs $150 a pop and you’re supposed to do that everyday for two months. And I’m going to a particular type of massage and just buying equipment. And it becomes a full-time job, as you know.
Brianne: Yep.
Garreth: So yeah, I don’t know if you have any questions or want to jump in here?
Brianne: So at this point, I want to just check in with the timeline. So have your symptoms changed at all? It was a lot of headache, dizziness, GI, sleep, which I imagine would also create fatigue, if you’re not sleeping well.
Garreth: Yeah.
Brianne: Are those still the primaries, has anything else popped up or changed?
Garreth: If you asked me to list my top 10 symptoms, it would be dizziness 10 times. I mean basically, that’s the whole ballgame. I have tinnitus in my left ear also that’s constant and probably would be annoying if that’s all I had. But given the circumstances I don’t care. You know, if I have tinnitus in my left ear for the rest of my life I really couldn’t care less. And I kind of only mention it to doctors because I hope it’s like a clue, you know? And I mentioned the jaw pain. As I said, I eventually got treated for TMJ and that cleared it up, so that’s good. I’ve been sleeping better I guess. I’ve been doing a lot to try to help with sleep. I’ve gotten really into meditation, which I actually think has helped with sleep. The GI stuff was really bad when I was on antibiotics. It’s better now. I’m just really strict with my diet and was doing a lot of bone broth for a while, which I think helped.
Brianne: Yeah, I was gonna ask what does that look like? I’m super interested in diets. Not in a prescriptive way, but as people find out what works for them that really interests me. So bone broth?
Garreth: Well, I mean, basically I’m gluten free, dairy free, and I try to keep sugar pretty low, but I do have a pretty vicious sweet tooth. So I’ve gotta have some chocolate, you know?
Brianne: Yeah. I eat an inappropriate amount of sugar-free chocolate I would say, which is not… Like you can’t eat very much of that because it’s hard to digest, but that’s where I’m at on the sugar journey.
Garreth: But no, I mean basically nothing has budged. I mean, the dizziness just does not change day after day after day. And that’s the thing that just really wrecks my life. I mean, I am very fatigued and I feel very stressed and very anxious, but you know, who wouldn’t after being sick for four years and you don’t know what kind of future you’re going to have and what am I going to do to make a living? I mean I spent 10 years learning how to be a music theory professor and that career has been taken from me. Maybe I can get back to it if I get better, but there’s been people that have been writing papers and teaching for the last two years and I haven’t.
Brianne: Yeah, it’s so much lost time.
Garreth: So much lost time. I don’t think I’ll ever really be competitive for a tenure track job again, unless someone just kind of really loves my story. You know, which I think is a compelling story and maybe I can try to use that. And I would definitely teach as an adjunct again, I’d love to, but you have to have another way to make money.
Brianne: You still need a main source of income.
Garreth: Yeah. So one thing I’ve done in the course of time is trying to learn how to build websites. I’m sort of googling like, “what careers make a lot of money in the year 2019?” And it’s like, it’s all computing. So I was like, “Okay, I’m going to try to learn how to do something on the computer.” It’s really hard, you know? But I feel like I’m getting there. And I’m going to do a shameless self plug here: if anyone listening needs a website. I’m kind of a beginner, but I’d really love a shot to build a website for you and you’d be supporting a chronic illness warrior. You can get my contact information through Brianne, so if anyone listening wants to throw me some work, I’d really appreciate it. And so there’s been a question like, am I having cognitive issues? And I don’t know. It’s hard to judge that on yourself. And it’s really hard in my case because I spent my whole life being a musician and learning about music and I’m not doing that right now. I still do play instruments every day, I have to or else I go crazy, but I’m not really engaged in that world every day. And I’m trying to learn this new stuff that’s really hard. So am I having a hard time learning computer programming because it’s hard and because I’m tired or because I have cognitive issues? I don’t know.
Brianne: Yeah. And if it’s a pretty constant issue, it’s also hard to compare. Like, for me when I was very sick, now a year and a half ago, everyday was a mess. And I’m now in a place where I wake up and some days… Today’s a good day actually. Some days I wake up feeling sharp, I’m like, “Oh, hello. This is a day where I am working.” And then some days like yesterday, I wake up and I’m like, “I need to go back to bed.” And when you have the comparison within your own life and body, then you can identify it again. I think especially cognitive fatigue or cognitive dysfunction is so hard to identify because your brain is the tool that you would use to identify it.
Garreth: To identify it, exactly.
Brianne: And so if it’s not working very well, like… That sucks.
Garreth: I mean for me, there’s not good days and bad days. They’re all the same basically. I mean, if I slept really badly then that will impact my ability to focus. But other than that, it’s the same every day and it just gets, it just gets so hard to find the time to do anything. So like right now I’m – we can get to my current diagnosis and my current treatment – but I’m doing hyperbaric oxygen therapy every afternoon for an hour and a half for two months. So that’s roughly 1:30 to 3, plus driving. So it’s a couple-hour thing. So I get up in the morning and I’ve got to sort of prepare my day’s protocol and I’ve got to do a bunch of things and take some pills and all this kind of stuff. And then maybe I have two hours between 10 and noon where I can try to work and then maybe I have two hours in the afternoon where I can try to work. And like, that’s it. There’s no more time in the day with the protocol and with the treatment. And I don’t function well if I don’t get a little rest in the afternoon. And then, so this is something that everyone with a chronic illness can identify with, the mail arrives and you’re just in fear of opening a bill because I’ve had so many tests and every day I’m like $600, $62, $940. You know, you just open it and you’re like, “What was this even for?” So like yesterday, or I guess I got this piece of mail on Friday but I decided to address it yesterday. I got this nasty note from a collection agency for $940, and all these threats about what they’re going to do to me. And this was for a test for gluten sensitivity that my primary care physician had ordered, which if I had known he was doing that, I would have said don’t bother. Because I don’t eat gluten and I’m fine with that. And the test says I’m not sensitive to gluten, but like I know I’m sensitive to gluten.
Brianne: And if you haven’t been eating it, it wouldn’t show up on a test anyway.
Garreth: Yeah, I haven’t been eating it anyway. So it’s clearly not part of why I’m sick. So the bill’s for $940. So I called this lab and I was like, “Look, I can’t pay this. What can we do? Can we reduce the price?” And they said, “Oh sure, no problem. We’ll figure something out and we’ll send you a new bill.” Well the next thing I know I get a bill from a collection agency. So I’ve got to call this lab and be like, “You guys promised me that you were gonna reduce the price. And then the next thing I hear is from a collection agency.” And it turned out they were really nice about it and I’m not going to have to pay very much, but my point is that that took an hour and a half.
Brianne: Oh yeah. So much time. And stress.
Garreth: And that’s two hours that I had set aside to try to work.
Brianne: Yeah.
Garreth: And, and so I lost that time.
Brianne: Yeah. There’s a lot of bureaucracy.
Garreth: It’s a lot of bureaucracy. You know, I’ve had so many conversations on the phone with the healthcare marketplace because our income is really low so we should be getting a lot of government subsidies. I didn’t file some form on time, so we lost our subsidies and now we’ve got to try to get them back. And just all that bureaucracy and all that time you spend on stupid crap. And you have so little time of day to function normally anyway that when you have to deal with things like that, it just kind of blows your whole day, you know?
Brianne: Yeah, yeah, yeah. And when you maybe get to do one thing a day. That’s how I feel about my to-do list. Like some days are nothing and some days I will do one thing. And if something else blasts the rest of your list out of the water, stuff can get put off for a really long time, which also makes work hard and deadlines hard, I find.
Garreth: For sure. For sure.
Brianne: Not that I’m doing much of that.
Garreth:
[laughs]
You make a podcast now.
Brianne: Yeah I do! That’s my thing that I’m doing and that’s why it’s biweekly, because it had to be. Okay. But so I think, I feel like chronologically, we haven’t caught up to present yet. You’ve gone to the naturopathic clinic, you’ve tried a lot of stuff
Garreth: Yeah. Looking back in time and being angry and bitter doesn’t do anybody any good. So I just try not to think about it. But for anyone listening, my advice: Don’t go to Dr. Klinghardt’s clinic. That’s just my advice. I’m sure he’s helped a lot of people. Didn’t help me. Complete waste of time and money. I really wish I hadn’t made that decision. So that’s all I’ll say about Sophia. So we’re done with that and I guess for awhile I didn’t really know what… I guess I didn’t have a treatment for awhile. Or a diagnosis.
Brianne: You kind of run out of things to try sometimes.
Garreth: Well, there’s always bee venom therapy at this point.
Brianne: That’s true. And celery juice.
Garreth: And you know, I want to say that my wife has just been incredibly supportive and incredibly loving and just… she and my parents and a couple of friends who check in on me. If it weren’t for them, I don’t think I’d still be alive, honestly. But you know, she’s had a few moments where she’s kind of freaked out, totally understandable. And I think she’s kind of wanted me to take a break in treatment. Like just stop for six months and see what happens. And that’s really hard to do. You know, intellectually I can say like, “Okay, well that’s a good idea.” But you always want to think maybe the next thing is going to work or the next doctor is going to figure it out. And if you’re not doing anything… There’s always hope that next week I’m going to feel better. But then if you’re not doing anything, you kind of lose that hope. And I think that can be really damaging to the old psyche.
Brianne: I also think it’s hard… Maybe it depends on who’s around you. And it’s interesting coming from your wife because I feel like other people in my family, they also want to know that I’m doing something. Like they want to know what the plan is to get better. And I also imagine being like, “Oh no, I’ve decided not to have a plan for a while.” That that would open up a bunch of difficult conversations, at least because of who the people in my own life are. But I’m sure that’s different person to person, family to family. But it’s interesting to think about.
Garreth: Yeah. So for me, I have to be working towards that goal. But I guess even… I tried DNRS for a while, Dynamic Neural Retraining System. I don’t know if you’ve heard of that. It’s basically a meditation practice, a positive visualization practice of visualizing a day like six months in the future and how great things are and you’re well. And so I was doing that for a while and it didn’t help. I mean, the answer’s always the same, nothing has helped. So let’s see, I guess we are now summer of 2018. And at this point I haven’t been working for awhile as an academic and haven’t been seeing many friends. My wife and I rarely go out because it’s just really hard for me with my symptoms, my dizziness. Like large indoor spaces are really challenging, going out to a restaurant with all the noise and all the visuals is really miserable, just is not fun at all. So I guess my dad kind of convinces me to give western medicine another try. And I am from Houston, so I know a lot of people here and my family knows a lot of people, so he kind of puts me in touch with some people who can maybe try to help me find a good doctor. So I kind of get back in the western medicine groove. And one of the doctors I saw here in Houston is a woman named Nellie Grose who’s kind of half MD and half Chinese practitioner.
Garreth: So kind of interesting and she spent a lot of time with me and I have a lot of Nice things to say about her. And she was also really honest, you know, which I appreciate. She’s like, I don’t know what you have. I don’t know how I can help you, but I want to do like one group of tests. I’m from a place called Cyrex labs, which kind of tries to be kind of a catchall for like, what is your body reacting to? And so she did this test, and the only thing I came up with was Aspirgellus, I’m not sure how to pronounce it, which is a type of mold. Yeah. And so she said I think you need to, you need to go find Dr Shoemaker. Richard Shoemaker, go to his website, call him and look into that.
Garreth: And so this was as I said, like last summer, I don’t know, July or August or something of last summer. So I did, I contacted Richard Shoemaker’s office and he doesn’t treat patients anymore, but he does kind of help you know, consult. Yeah. So I’ve talked to him a few times. He said, here’s, you know, nine blood tests you need to go get. Okay. And I got the blood tests and talked to him and he said “you have CERS. chronic inflammatory response syndrome.” You are sick because of mold exposure. You have the genetic markers, you have not a perfect picture, but these blood tests, you know, really reveal, I mean he again said 100% certainty. I’m certain this is what you have. Yeah. And so I’m not as excited this time about it because I’m much more skeptical, but you’ve already been through the Lyme debacle so I’m sure that informs.
Garreth: But, so one of the things that he had me do is this special kind of MRI called a NeuroQuant. I’m sure some of your listeners have heard of this. It basically measures the, sort of the size of various parts of your brain, compare it against other people your age or like the overall volume of your brain. And if certain parts are larger or smaller than what percentage they should be, it actually had to go to Fort Worth to get this test done, which is strange because Houston is supposed to be this awesome medical city. So I went to Fort Worth and got this MRI and getting this MRI interpreted by shoemaker and an another CERS doctor, who else, I’m sure I’ll talk about Critaneo who’s actually been treating me now. And it was really very frightening, but also very validating. Basically my brain looks like an Alzheimer’s patient or PTSD or someone who’s had a lot of concussions. Certain parts of my brain are, have shrunk by quite a lot. And that would explain, you know, mood issues. I would explain dizziness that would explain cognitive problems, explain a lot of things. So it was really scary because like my brain is literally damaged according to this test, but also validating, like I told you something was wrong.
Brianne: Yeah. Like something showed up finally. Yeah. If it’s something scary.
Garreth: Exactly. Yeah. So as I said, Shoemaker doesn’t treat patients anymore. So I kind of searched within his, he’s got a bunch of trainees, and it was actually after he saw the NeuroQuant he said “I think the guy you need to see is Craig Tanio who was in Miami, actually Hollywood, Florida. So, and I’m now working with him my wife and I went there in mid February, so just a couple months ago and saw him started on, on his treatment plan.
Brianne: Was that your first time seeing him?
Garreth: It was, I talked to him on the phone a couple of times. But I’m a month into his treatment protocol now.
Brianne: And what does that look like?
Garreth: Primarily it’s, Dr Shoemaker discovered that this cholesterol medicine called cholestyramine works great as a binder. A lot of people know about binders out there and in fact, I get a lot of, a lot of binders. When I was working with Sophia, I know I supposed to grab bad stuff, pull it out of your tissues and out of your body. So it’s a lot of cholestyramine four times a day. And it’s challenging because of binding, you have to wait like an hour after you eat and a half hour before you eat. So you have to find these big spaces in the day. In fact. Yeah, just for realism. I’m going to drink my cholestyramine right now while we’re on the air, because it’s time.
Brianne: Do it, it’s hard, especially if you have any other medications or supplements that also have food or non food requirements because you’re like, okay, I need to wake up and take something and then wait an hour to eat and then eat and then take more stuff and then wait two hours until I have an empty stomach again.
Garreth: Yup.
Brianne: I always end up like, I forget if I’m on, if I’m pulsing something right now I’m pulsing something that I have to take 10 minutes before food, two hours after, just going to keep talking while you finish your thing. But it’s like by the third day, never the first day. I always remember the first day, but by the third day I’ll be like, aw shit. I just had a snack. There’s never a time when I haven’t eaten for a few hours because that’s not what my life is like.
Garreth: I just screwed up this round of binding and I’ve got to wait another hour and a half
Brianne: Or I have to stay up later. I have to stay up later just to take the stupid thing. Which, I don’t do a lot.
Garreth: Well you know, I think one message that is important in this kind of builds on what I said earlier about like being kind to yourself. Like you don’t have to do your protocol a hundred percent
Brianne: Yeah.
Garreth: You’re not going to be better tomorrow because you got this one binding in. If you miss a round of binding, like you missed a round of binding, don’t be hard on yourself. Don’t, don’t make this another thing to beat yourself up about.
Brianne: Right. And especially if you have the like perfectionist tendencies, which, because you were talking about that earlier and I think a lot of people do.
Garreth: I think a lot of people that end up really sick do, actually I think that’s an interesting, would be an interesting research topic for someone.
Brianne: Yeah.
Garreth: The personalities of the people who end up chronically sick share.
Brianne: Yeah. Or like who end up in these rabbit holes. Because the other thing about it just as much as it’s like just eating is it makes it hard to do things. Like it can already be hard to leave the house for all kinds of reasons. If you’re tired, if you’re hurting, if you’re Dah, Dah, Dah, Dah, Dah. And then you also have to like bring all of this junk with you just in order to stay on your timeline, which is like,
Garreth: Right.
Brianne: So small, but it’s one more piece of cognitive overhead that can be frustrating at times.
Garreth: Yeah. And traveling, I mean my God, all the stuff you have to take if you go traveling.
Garreth: So yeah, so the, the binding or he wanted me to do hyperbaric oxygen therapy, which can help with a lot of things. It’s supposedly going to help me with cognitive issues, which again, I don’t know that I’m having, but you know, it’s, it’s easy. And I got a pretty good deal at $35 a session. But he wants me to do 40 sessions as quickly as possible. So it’s basically five sessions a week for two months. And again, that’s a big chunk of the afternoon. Yeah And it adds up in terms of the, in terms of the price of course. So I’m doing that. Oh, what else am I doing with Dr Taneo? There is a nasal, a sinus infection called Marquand’s and I am going to get it wrong if I try to say multiple antibiotic resistant, something, something, something.
Garreth: I don’t really understand what it is or how it relates to to mold illness, but at he wants me to, to clear that out. So it’s basically like you do a nasal rinse three times a day, with this new machine called the navage. It’s a terrible name, but it’s kind of like a mechanized, netty pot. And my wife was having to do that too cause she had her test from marquands and and you know, it turns out she has it as well. So there’s that. What else with Dr Taneo? I should have had my protocol here next to me. Cleaning, cleaning the house, cleaning the house is big. You know, we spend a lot of money. We’re, we’re renting a house here in Houston that was built probably in the 60s, so it’s pretty old and you know, it’s always rainy and always humid in Houston.
Garreth: So molds a big problem. So we’ve had the house tested numerous different ways and actually I think the house came out pretty well. We ended up replacing all of our AC. I hope my landlord doesn’t listen to this. We ended up replacing all of our AC registers and we’re just cleaning. We’re just keeping the house as clean as possible. Oh, I’ve got some air filter going. And we’re hoping that we’re going to do another, another test for like mold and hopefully it’ll be lower after all the cleaning we’ve done.
Brianne: And this isn’t where you were living when you first got sick?
Garreth: No, I was just about to talk about that. The clinical story. This, this diagnosis makes a lot more sense to me than, than Lyme ever did or any of the other ones. And so I’m really trying to be positive and right now my feeling is that this diagnosis is correct.
Garreth: I’ll be getting better within the next six to eight months. That’s, I think that’s right. And I believe in this diagnosis more than I’ve, it just feels more more correct to me. Part of that is sort of the clinical story. So we talked about how I started to sleep poorly and have stomach issues when I moved to Wisconsin. So the building that I worked in there the Moss Humanities building is this horrible, like ugly rundown building that was built in the late sixties, early seventies. And like, especially during the winter, when I left my office for the day, I could not leave any books or papers on my desk because they’re literally rained from the ceiling from condensation. Yeah. So there is oh, chance of this building doesn’t have mold in it. Yeah. If it’s, it’s constantly waterlogged and there’s just water in it all the time.
Garreth: There’s gotta be mold there. Yeah. So that, so maybe I started really reacting to mold when I was in Wisconsin and I started to sleep poorly. And I also, I was involved with the sailing club, university sailing club for a while. So I was in and around the lake when there was blue green algae, is that what it’s called? Yeah, when there’s blue green algae, which is a biotoxin. And then the first house we lived in, this is actually the third house we’ve lived in in Houston. The first one we lived in was by far the crappiest. The landlord just did not take care of things. I know for a fact that house had been flooded a few times. I have no doubt that that house had mold in it and that’s when I got sick. Yeah. So I think most of my exposure is in the past.
Brianne: Right.
Garreth: But you still just have to keep your environment as clean as possible so that you’re pulling more out than you’re taking in.
Brianne: Right.
Garreth: Essentially. And the better you can make that ratio of what you’re pulling out then what’s your and should be taking on and then the faster you should be able to recover. So clinically the story makes a lot of sense.
Brianne: Yeah, definitely.
Garreth: But you know, I still have a lot of skepticism. I don’t care what tests I take or how many letters a doctor has after their name. If they tell me I have a diagnosis x, I will believe I have diagnosis x when the treatment designed to help diagnosis x makes me feel better.
Brianne: Right.
Garreth: And that’s it. There’s no other evidence I will accept at this point.
Brianne: Yeah.
Garreth: I’ve said that basically exact sentence to Taneo and he gets it, you know? Yeah.
Brianne: Yeah. Cause it’s such a ride. I mean, and you’ve talked about it a little bit. About like, if you’re not doing anything then you lose hope. But it’s also true that like it’s such an exhausting journey. Every time you get a new protocol or you find a new doctor and you’re like, maybe this is the thing. And then if it’s not, you’re like, okay, okay, be cool. Like we can find something else to try.
Garreth: I mean, I don’t know how like mentally I will deal with it if like six or eight months from now, this is not helping. I don’t know.
Brianne: Yeah.
Garreth: Yeah. I feel like I’m kind of getting towards the end of what options I have and what I can do.
Brianne: Right. What to look into. I don’t know what I’ll do.
Garreth: I know. So I’m just trying to think really positively.
Brianne: Yeah. Well, and like with mold, have you, okay. Have you been down the mold rabbit hole the way that it sounds like you did for Lyme? Like, because I would say it also has a lot of interesting internet communities for example, they both do, of like people and all this stuff that I’m not advocating this I just, know from experience. It’s like have you read Through the Shadowlands by Julia Rehmeyer? I actually just interviewed her, which is exciting for me, but she wrote a book. It’s a, it’s a memoir, but, so she’s like a, she was a science writer, I think she went to MIT at one point and she like was writing a math column and she got sick with basically, I think she was diagnosed with chronic fatigue syndrome and she started researching and whatever and going through all of the things that people go through.
Brianne: And she ended up, I think through the Internet and this would have been like five or six, no more than that, this would have been almost a decade ago, I believe. And she also fell into mold stuff and it was like Schumacher was out there writing maybe even still training people at the time, but just like there are communities of people who are like, the only way to cure yourself from mold exposure, I don’t even know the language that they would use is, to go and be completely away from mold for two weeks and they call it a mold sabbatical and you’re like go and camp in the desert and everything has to be clearly new, or maybe not new, but definitely not mold exposed. So like all of your gear, all of your clothes, all of your whatever. It’s a whole rabbit hole.
Garreth: Yeah, I haven’t really heard about that specifically, but there are a lot of questions about, you know, some people say, oh you have to throw everything you have, every everything you have is porous. Every book, every paper. Every piece of clothes you have got to get rid of it. And then I think Shoemaker himself is like, that’s absurd. You don’t have to do that. I am washing all my clothes in Borax, which is supposed to kill mold. And you know as I said, we are cleaning the house. Like, you know, every single thing in the house. We’re cleaning, we’re putting a lot of books away. We’re not, we’re not throwing stuff away. So I’m trying to, it’s my, it’s the skepticism thing. Like I’m trying to straddle this line between, I want to give this protocol the attention that it deserves, but at the same time, money is a major problem. Even, you know, I, my, my, even though my parents are just so incredibly generous and they continue to help support us I can’t just be like, oh, I’m going to spend $5,000 having all my clothes sent to this place that cleans it from mold.
Brianne: Or I’m going to throw away every single thing
Garreth: I’m going to throw away, I’m going to throw away our $600 sofa and our $300 sofa and our bed and I’m gonna move. I’m gonna like, you know, find a house to rent that was built like five seconds ago. You know, we just, I just can’t spend that money in that time until I know that this diagnosis is correct. So if I get like a crack of light and I start to feel a little bit better and it becomes obvious that mold is the thing, then I will throw away every bit of clothes I have if I have to. I’ll do anything to get better. But you also have to have a healthy skepticism and you have to, you just can’t, you just can’t go whole hog and everything. Like I think the mistake I made with Sophia was that anything they said, the answer was yes. And no matter what the cost, no matter what the effort, and I just can’t do that anymore. Financially.
Brianne: Yeah. Yeah. And I think that’s one of the hardest things about it. On top of the actually living with sometimes debilitating symptoms is like this mental math of like what’s worth it and what’s not worth it. And I don’t want to be so skeptical that I don’t try something that might help me, but I don’t want to try absolutely everything because probably there are people out there who don’t know what they’re talking about. I mean, definitely there are people out there like that. And it’s like with what you were just saying about getting rid of all of your belongings. So we definitely lived in a moldy house and my moldy house definitely made me sick and we did not get rid of all of our belongings ultimately. But we had put them in storage for I dunno, three months or something after we left the house. But it’s like every time I’m doing so much better than I was in that house. No doubt, there’s no doubt in my mind that mold had an impact.
Garreth: That’s great. Well, that helps me to hear that, honestly. Yeah,
Brianne: I will say that. Absolutely. There’s no doubt in my mind that like, and I went through, I did not take cholestyramine although I’ve heard of it. I did take a lot of glutathione, which is like helping your liver process stuff. Oh, actually I took a lot of anti fungals. So I took like Nystatin and Fluconazole. Anyway, but we didn’t get rid of all of our stuff. And it’s like every time I start to feel a little bit worse, part of me is like, is this because I didn’t get rid of all of my clothes or we can get rid of our books, but it’s unknowable is the other thing.
Garreth: Right.
Brianne: So I’m with you on moderation, but it’s hard.
Garreth: And you know, the, the problem with like CERS is that the only research out there is by Shoemaker and his people. So you Google anything about mold illness and CERS and it’s like you get his website, you know, and so there’s kind of no way to sort of double check that.
Garreth: Although you know, I’m, I am seeing a primary care physician here in Houston who’s a really great guy and really thorough and really wants to help. I think he kind of doesn’t know what to do with me. But I kind of use him as like, does this seem like sound science to you? He feels like it does. So that, that helps me to, you know, anything to build, to build confidence. And I want to turn back to the chronic Lyme thing because you know, and maybe this CERS thing is really right in my case, maybe there’s a lot of people who are taking antibiotics for, for for Lyme and it’s really, it’s mold or, or you know, CERS. And like Sophia, they tested for mold but they didn’t know the tasks to do. Like, why did one of them not read one of Dr Shoemaker’s papers?
Garreth: It’s nine pages. It doesn’t take long. Yeah. If every patient that walks in the door, you’re like, we have to test you for mold. Why don’t you learn more about how to test for mold? It’s like insane to me. Like they never did the HLA Dr Genetic test, which shows I’m super susceptible to that. They never had that ordered. They had me do a real time labs test where it’s a urine test to see if you have mold in your urine. And it came out totally clean. So they said, you don’t have mold. The reason it comes out clean is because I have the HLADR Gene and I don’t detox mold. So it’s not, it’s not in my urine. It’s staying in my body, which is where you don’t want it. So you can kind of load up on glutathione and do some Saunas and that will get the stuff moving and then you do the test. And I did that and low and behold, I had a lot of mold in my urine. Yeah. So why do they not know that at this clinic in Seattle? Again, I don’t even want to… there’s no point thinking about that.
Brianne: It’s significant. I think this is true with Lyme and anything mold related is that they’re both like fringe ideas right now who have a couple doctors who are doing kind of all of the work and then other people who are following their protocols and it’s like there’s not really funding available. There’s not CDC recognition. There’s depending on who you believe, there’s an active lobby discrediting a lot of the work on these things. Like there’s so much, so many, so many politics around it that make it so much harder when obviously there are so many sick people, there are so many sick people.
Garreth: Well, and I don’t want to get into politics and stuff too much, but you know, I, the reason that I’m saying probably the reason that you’re sick is because our planet is sick and there’s just so much pollution. We have so much like heavy metals in our bodies and all kinds of toxic stuff. There’s plastic in the food that we eat every, you know, everything that we eat and drink and breathe has got crap in it that’s not good for us. And you know, I think I’m a canary in the coal mine and you probably are too. I think in the next 30 years there’s going to be just millions of people getting sick like this and that’s going to be a huge burden on our health care system and it’s going to be a total disaster. I’m so optimistic. I think that yeah, it’s really something that we have to address as a, as a society, but we’re not, we haven’t even started to.
Brianne: No, certainly not around this stuff. Not in any mainstream way. And it’s like all of the things that you can do right now, it’s also hard to tell if they are effective. As I’m sitting next to my fancy air filter and like I drink water out of my fancy water filter.
Garreth: Me Too. Do you have an Air Oasis? Is that what you’re rocking?
Brianne: No, no. I have a Molecule which is a..
Garreth: Oh, okay. I get asked for that on Instagram.
Brianne: Yeah. Yeah. It’s like a silicon valley created product. And I have two! I bought two.
Garreth: Yeah. I’ve got, I’ve got two air filters too. Yeah.
Brianne: At least this is like some of the protocol stuff to me where I’m like, well, I did it because I feel like I had to, because if air quality is a problem, then obviously I want to fix that. But I actually have no idea. I have no idea if this makes the difference or any difference to me, but it should.
Garreth: Yeah. Well you’ve already, it sounds like you’ve already proven that you, you got out of a moldy environment and that helped. So that would seem to be a pretty big clue for you. Yeah, so I’m just looking for, in the next like six months, I’m like, I don’t expect to be 100% better, but I need like a crack of light to shine through, you know? And, Dr Taneo knows this too, like you, you gotta prove to me there’s gotta be accountability. You’ve gotta prove it to me in the next six, eight months that this is helping. I want one thing I wanted to kind of address. We’re, I’m sure we’re probably getting towards the end of my tail here, but I just want to say to anyone who is listening who’s not sick but has friends who are sick, I just want to beg and plead to people to just reach out to that person, that friend of yours who is sick. I mean, it takes so little time. Just send a text, be like, hey man, I’m thinking about you. I hope you’re doing okay today. You know, it just means so much. I can honestly mean the difference between you know, between the day, just to know that someone’s thinking of you and your social circles shrinks, and you feel really lonely and you’re isolated because no one can understand what you’re going through. And people stopped calling and you just feel forgotten and cast aside. And just the, the tiniest bit of effort can mean so much. I’ve had moments where I just, I’ve had a lot moments where I’ve wanted to die, you know? And I’ve ended up calling the suicide prevention hotline a couple of times. I don’t think I’ve ever actually do anything to myself, but I’ve thought about it. And if you, you know, you never know that your friend who’s going through this is having that moment and you send that text and it’s just the perfect time and they’re like, you know what? I was feeling so bad and now I feel a little bit better. Yeah. So I really wanted to say that.
Brianne: Yeah. Yeah. I think that’s a really important reminder. I think like some people talk a lot about both the mental health side and also like you start to lose your identity. So you’ve talked about that a little bit about not, that you still are able to play instruments, but it’s not, you don’t engage with music the same way that you used to. You can start to feel like you’re disappearing from your own life because of all of the things that you did, the people that you saw the moment, like everything that defined who you are.
Garreth: Yup.
Brianne: Can we take it away from you or you lose them and it’s like, I get the other side of it that it’s hard for people who are like, oh well you keep cancelling plans so I’m just going to leave the ball in your court. And you’re like, okay, but that’s not the thing here.
Garreth: Yeah. And you know, at the same time I don’t, I don’t want to be judgy about other people and how, I mean, that’s, that’s why I said just if you have a friend going through this, just know that it’s, it really means a lot to them. If you, if you reach out, I don’t want to say the opposite and be like, you’re being a dick if you don’t. Because you know, if it were me and it was someone else like I wouldn’t understand. I wouldn’t get it. You can’t get this unless you go through it. And like I can be angry about the way that I was treated by the people I worked for at the University of Houston, or I can be bitter that this friend or that friend never calls me, but I don’t think I would’ve been any different.
Brianne: Right, right.
Brianne: It also like you can send texts, et cetera. This is, there needs to be more resources around this actually. But like that aren’t invitations necessarily. Youcan just be like, Hey, I know you don’t feel great. I’m thinking of you, which was your example. But like you don’t have to invite someone to do something if you don’t know what they’re up to. You can just say, hey, that’s fine. That’s good. Can you say, and it can make a big difference.
Garreth: Or even, you know, like, I know you’re probably not up for coming to this party on having, but I, you know, we’re going to miss seeing you. Yeah. And just the smallest bit of effort really, really, really means a lot. And I do have a several friends who do that, who just send me texts out of the blue and say, how are you doing man? You know, it means a lot.
Brianne: Yeah. Yeah. The relationships side of it, both like romantic relationships and family relationships and then friends who are kind of sometimes just out there. It can be such a big element. Like it puts such a strain on relationships and when you stop being the person you were in them for sure.
Garreth: Yeah. I think your phrase of like disappearing from your own life, is this really accurate. You do. You’re like, who am I anymore? I know. I used to be very outgoing and always wanted to go to the party. I’d be the last person to leave and I’m not that guy anymore, you know? Maybe I will be again. I hope so. I’ve also been, I started going to church, which is really weird for me. I don’t, I still don’t think I believe in God, but I’ve been going to Quaker church, which is just like an hour of silence. So it’s pretty awesome. And I’ve been trying to speak to God or whoever, and lately I’ve been saying thank you for this gift of this illness. I’ve learned a lot from it and this made me a stronger and a better person, but I’m ready for the next gift.
Garreth: Yeah. So yeah, we just keep fighting, don’t we?
Brianne: That’s, the thing to do. But that strikes me a lot. Like I’ve learned a lot, which is true. I’ve learned a lot. I’m ready for something new.
Garreth: Yeah. It ready for this space to be in the past and yeah, let me learn something new.
Brianne: Yeah, I like that a lot. I do think we’ve covered kind of all of my stuff and you’re, I know you brought up a few things. Is there anything else that we haven’t talked about that is on your mind about chronic illness? I feel like that’s the last thing you said was, so
Garreth: There is probably a ton of stuff, I feel like we have probably reached a pretty good, yeah.
Brianne: A good closing point.
Garreth: Well thank you so much for doing this. I really appreciate it. Instagram is my only social media that I like allow myself now, Facebook just, also, if you’re chronically sick, just don’t do Facebook.
Garreth: Just stop. Doesn’t help. I like photography a lot. So, you know, Instagram, I feel like I can handle it, but I thank you for what you’re doing.
Brianne: Yeah. It’s been an honor so far to collect stories. I really, I love it. Even if they’re, you know, they don’t have happy endings. They’re not supposed to. It’s just the truth of our lives.
Garreth: So, well, mine’s going to have a happy ending. So yes.
Brianne: But at the time of recording in general, I think, I think before I started releasing them, people were like, well, I haven’t solved the problem yet. So do you want my story? Yes, I do. They’re meaty. That’s the whole thing. Yeah.
Garreth: Well, thank you for collecting my story.
Brianne: Yeah. Thank you so much for sharing and thank you for your patience during the first like 45 minutes of nonstop tech issues.
[guitar riff]
Thank you for listening to episode 29 of No End In Sight!
You can find Garreth on instagram @garrethpaultx, you can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.
I’ve got many more stories to share with you, so make sure you subscribe on itunes or stitcher or wherever you get your podcasts. And if you’ve been enjoying the show, I would be so grateful if you could share a review on iTunes so that other people know what to expect.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.