Episode 8.5 – Bonus Adam

No End in Sight, a podcast about life with chronic illness

Brianne and Adam talk about diagnostic challenges, the limits of language, and the future of healthcare.

Listen on iTunes Listen on Google Play Music Listen on Stitcher

Transcript:

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

Since it’s a holiday here in the United States, I’m doing a shorter bonus episode this week. After my conversation with Adam that you heard last week, we ended up talking for about another hour. Some of this is a rehash of my own history, and some of this is more theoretical about the diagnostic challenges that are unique to chronic illness, and what the future might look like.

I would also like to take a minute to celebrate two new reviews on the Canadian iTunes store! I just learned that reviews only show up in their country of origin, which is kind of strange, but there ya go.

Ellbeeee said “An enlightening listen – whether you live with chronic illness or not. Great interviews, great work, highly recommend.”

And RWJBoon said “An exceptional podcast talking to people about an important, overlooked part of medicine, health and living.”

Thank you so much friends! And in this case, I think these are both from friends. Thank you for listening!

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]

Adam: If you don’t mind me asking, I’m sure your journey is equally long and detailed as mine.. But I’m curious what you’ve experienced that made you to do this, because this is something I’ve thought about before.I think a podcast like this would be incredibly valuable.

Brianne: Yeah. So, mine. I got one of my friends who is not sick to interview me, and I fully talked for two hours. But basically, I have been weirdly fatigued without any severe severe crashes. I didn’t go to the doctor for it a lot. I didn’t know what was going on, and I coped. Through most of my 20s, I think I was way overextended. So I was working full time and I was volunteering all the time. And at first I just had a really… well, I had had fatigue always and ignored it. And then I started to get just a really bad rash. That was the thing that happened for me. And I don’t know, the doctor gave me hydrocortisone cream and then something else. I went through this whole thing, and then I went to a dermatologist who told me it was scabies, which it wasn’t. It was all this stupid stuff.

And so I got, for one of many times, to that frustration point where I was like, “Okay, fine. I’m going to do a dietary intervention because I don’t know what other questions to ask, and I don’t know what else to do.” I think that time I did something called the Candida Diet, which is basically a low carb diet meant to target… It’s in that family of, “Okay, your intestines are overgrown with yeast.”

Adam: Yeah, starve it out.

Brianne: It’s one of those internet things that I have zero… I don’t care. I don’t care if it’s real or not. But I did it and it really, really helped very quickly. My rash went away completely. And I was at a point where I was scratching so much that I bled every single day. And so that really helped. But it involved… I stopped drinking completely, and I stop drinking caffeine completely. And during that time, I also started a new job. So I had been working somewhere that I was in a coworking space, and I basically worked lying down 50% of the time because there were a lot of lounge areas and so it was socially appropriate to work lying down 50% of the time. But the truth that I did not realise was that I really needed to work lying down 50% of the time. And so all at once I stopped drinking, which is really good at masking symptoms, and I stopped having caffeine, which is really good at masking symptoms. And I started working in an office where I had to sit at a desk from nine to five, which normal people can normally do. And I just started to have a really rapid health collapse.

So first I was just going home and going to sleep a soon as I got home. And I do have syncope, so I have fainted before from other things. But it was like, if I stayed up past 9:30, I would start to black out. My body was just not on board with being awake past 9:30. And I just kind of start to melt, I don’t even know how else to describe it. And this was a little bit over two years ago, so I’d kind of had all this vague stuff forever. And also, I had really bad mono in high school, and I am hyper aware of my lymph nodes because my neck lymph nodes were swollen at that point. And so all through my 20s if I didn’t sleep well, I would have tremendous pain in my lymph nodes. And I just thought that’s what being tired felt like. And this is like of those language things, I’d be like, “Yeah, I’m really tired. I didn’t get much sleep last night. My neck is throbbing.” And people are like, “Oh, yeah… totally… Throbbing-neck tired, I know what you mean…”

And so I was able to two years ago take my job remote somehow, and I was like, “Okay, I’m going to really focus on this.” And at that point, I went to see a functional medicine person. And she ran a ton of tests. And it was partly like, “Okay, here’s a bunch of supplements because your hormones are all fucked up and your everything is fucked up.” And I went on a prescription-strength, a bunch actually, prescription-strength anti-fungals. Because she was like, “Well, if the Candida Diet worked before, then maybe that’s a piece of it!” And that kind of helped, because I was at a point where I was sleeping probably 12 hours a night, and then two or three hours during the day, every day.

Adam: You were probably getting so diagnosed with depression so often.

Brianne: Oh, yeah, totally. And for me, my my dad died when I was 22 and I was deeply grieving. And that was a really difficult mental health time for me. And so at this point two years ago, it was really hard to be like, “Listen, I have experienced poor mental health. My mental health feels fine. I cannot get out of bed for more than seven hours a day.” Like, these aren’t the same thing. Please don’t tell me that. And actually as an aside, a reason that I think that therapy can be very helpful, because I did start to see a therapist and I was kind of talking about it with her. And I was more functional for a while, after all the antifungals. So I wasn’t napping all the time. And I moved into a new house. And she was like, “Hey, I’ve known you for a few months now, and I’ve heard you talk about this stuff and you sound really uncertain about whether it’s a mental health issue or whether it’s a physical health issue.” And she was like, “I just want you to know that I don’t pick up any signs of mental illness. What you are describing, although I understand that you don’t know how to describe it or what to attribute it to. But, I’m pretty confident that you’re describing something physical.”

And then I moved into a new house. My husband and I rented a house. We were living in San Francisco. And we went away for a week in June, a year and a bit ago, so 15 months ago, and we went away for a week and we came back to the house and I had my worst collapse ever. I couldn’t. I would go to the couch in the daytime and watch tv with my eyes closed, and some days I could go to the bathroom by myself and some days I needed to be walked to the bathroom. I couldn’t physically navigate that or get off the couch by myself. And that lasted for a week or two and then slowly improved. But still sometimes we’d walk to the grocery store and I would kind of just pop out of it. And I was mentally foggy and I was physically exhausted, just body tired. And I got a tremor, I started to shake all the time. Oh, and I had skin pain. The skin pain started earlier. I know what skin pain is called and now I can’t remember, but there is a medical term for it.

Adam: Yeah, I’ve been fortunate enough not to have to learn it.

Brianne: Yeah, allodynia. It’s called allodynia. But it’s just like… your skin hurts. I don’t have a better way to describe it. That had started a year before this started. So if I didn’t sleep very well or if I pushed myself too hard. So at a friend’s wedding when I was like, “Fuck it. I’m going to eat whatever I want and I’m gonna drink. And I’m gonna act like all these normal people who can go to weddings. And drink red bull to get through it.” And the skin on my thighs just felt like it was bruised. It’s like touching a bruise, but everywhere. And there’s no bruise. And then it would spread up my torso.

Adam: So I’m sure you got fibromyalgia too. Yeah.

Brianne: Yeah. So that was happening and that had gotten worse. And my joints were really swollen in my hands, this is last summer. And so I went back to my insurance doctor, my primary care physician, because the functional medicine person was someone I had paid out of pocket, They were an out-of-network person for sure. So I decided to go to my primary care physician, and I did it. I wrote out the list and I was like, “I am visibly shaking. I can barely walk. I have been brushed off by doctors since forever. And I’ve had other weird stuff. I’ve had a chronic sinus infection for years, just all of these little things that I’ve been tested for. I’ve had neck x-rays, I’ve had whatever since I was a kid, but nothing has ever meant anything. And it’s always been something that I could manage and it’s no longer manageable.” So she was like, “Okay…” So she ran whatever their standard test panel was, which was very small. It was an HMO. She’s like, “Everything looks good!” She just said, “You should be heartened by the fact that all of your numbers are normal.”

Adam: Yeah, I’ve gotten that a lot.

Brianne: Yeah. I was like, “I am not heartened.” And also, I didn’t know what to ask for. Because I had kind of wondered about autoimmunity, all of the usual suspects. I’d wondered if I had an autoimmune disease, and all of those numbers had been in range, and before that had gone into some fringy things like adrenal fatigue.

Adam: Yeah, that’s a really…

Brianne: It’s a good one. But certainly my hormones were fucked up in that way. But I didn’t even know what to ask her for. So someone suggested, “Why don’t you ask her, as a doctor, what would she do if she was in this position? Describe it again and ask what she would do.” So I said, “Okay, so if you were shaking and in pain and physically found it difficult to walk and you couldn’t work, what would you do?” And she was like, “Well, I guess I’d talk to my employer.” I was like, “I’m not asking you for career advice. I’m asking you for medical advice.” And she asked me to come back in. And I went through it again, and I think I did it at-home sleep test, and she was like, “Let’s let’s do a hand x-ray because of your knuckles. Even though all my immunity stuff had been normal, maybe it was rheumatoid arthritis, which it wasn’t. And she was like, “I discussed your symptoms with a neurologist, and they said it sounds fine. And I talked to the rheumatologist and they said it sounds fine.” I was like, “Well, I’m worried that it’s going to keep getting worse because I have this pain and right now it’s when I don’t sleep well, but it’s happening more and more frequently.” Because at this point It had been happening for a year. And I asked if she would classify it as chronic fatigue syndrome, having done the research that this is pretty meaningless and non treatable. But also I stopped working last September, and I just wanted a word to use when I told them why I was stopping working, because I felt crazy, and lazy and like I’m just, you know, out there.

So I was kind of of two minds about it, like I’ll pursue whatever I want to pursue, but I would still like a word that I can use when talking to people who do not want the details. And she was like “Well, that’s an elimination diagnosis. So, maybe.” And I’m like, “You’re saying that like you have other things you want to eliminate.”

Adam: You haven’t eliminated anything.

Brianne: But also you don’t have anything you want to test for, so… And so I was talking about the pain, and she was like, “Yeah, well, if it gets worse then we can put you on some fibromyalgia medication, which is basically antidepressants.” I was like, “I’m not going on antidepressants for something that you don’t understand.” I think depression is complicated, certainly. And I think many people are misdiagnosed because of all of the things that we’ve already talked about. But I am not taking a medication just because you want to give it to me so that I don’t keep asking you questions, which is what’s happening. And then at that point I stopped working, and at the same time, oh! I read this book Through the Shadowlands, which is a memoir written by this woman who is a science reporter, and she went to MIT, she… whatever. She had a math column. And then she started to get sicker and sicker and ended up being diagnosed with chronic fatigue syndrome. And it’s a really well written book about all of the difficulties of going in to see a doctor when you expect them to help you. She’s like, “I am not an out there person, I have full faith in science, and I did not expect this to happen. I know that my body isn’t working in and these doctors are trying to tell me that it’s in my head.” It just documents that really well. And it goes into a lot of the history of stuff with the insurance companies and the legacy of chronic fatigue syndrome. And then she finds out in her case that avoiding mold makes a huge difference in her neurological function and fatigue levels. She can basically live pretty normally if she fully avoids mold.

I was like, “Oh, that’s an interesting book.” And at the same time, we left our house again. So we’d been living in San Francisco, we were in Brooklyn for a wedding, I think. And we went out for breakfast, and then were debating whether or not to go on a 15-minute walk to stop at the pharmacy. And I hadn’t been able to walk that far in months, and then I could. And we were like, “That’s really weird.”

Adam: Yeah, I’ve had similar experiences. In the last few months, I had to go to Spain for work. I say “had to,” right. That’s a great example… I had to go to Spain. I was fortunate enough to go to spain for work. But obviously, as you can imagine, I was terrified that I would be in bad condition during it. And being there, I actually felt very refreshed, which is exactly what a lot of people want to hear. Like, “I knew you just needed a vacation!” It wasn’t a vacation. I was working literally the whole time. I was going in to work. I suspect it probably had something to do with the food, but I have no idea. I have no idea, it could have been anything.

Brianne: Yeah. There’s so many variables,

Adam: But it’s so funny that, like your travel thing. I’m sure you tell people that story and they just want to be like, “You got a town, you relaxed a little bit, you let loose.” And it’s like, sure, whatever you want to believe about me.

Brianne: Totally. It’s all better now. But from that, we were like, “But maybe it is something about the house.” Because a month before that we had been gone again and we came back and I nosedived again. So we decided to stay at a Residence Inn. I had a doctor’s appointment at the end of the month with this guy who was a naturopath. But it’s interesting because it varies state by state. So in California, they can prescribe and they can order labs. Which they could not in New York, actually. And so that was an interesting factor. And my sister had recommended him much earlier in the process, she said “This guy is like a lume and chronic infection specialist and also handles mold exposure.” I was like, “I don’t need to see that guy, that has nothing to do with me.” And by this point, I was like, “Sounds great. Give me all the tests.”

And so we moved into a hotel, and I was using a mobility aid because I was having so much trouble walking. And I found out when I saw him that my knee jerk reflex had stopped working. And I was mad that my HMO doctor didn’t test that, because that seems like a standard thing. And maybe she would’ve believed me that something was wrong. But anyway, among the things, basically, there was toxic mold in our house, which doesn’t explain everything but I was already susceptible. And so I had all of these new neurological symptoms that I’d never had before caused by the toxic mold in our house. It was chaetomium. And we had only been living there for six or eight months, it was very new. And certainly the 15 hours of sleep thing was before that. But it was just a really steep decline from there. And I’m still in the mystery situation of I’ve had an indeterminate lyme test, I tested positive for a bunch of co infections, so babesia and bartonella.

Adam: Oh so you were positive for those, that’s interesting.

Brianne: Yeah, so I was definitely positive for babesia and bartonella so he said, “You’ve definitely been bitten by a tick.” Even though I don’t remember having been bit by a tick. And I grew up in Canada, in Ontario, which is certainly lyme country, but doesn’t think of itself as lyme country. Which is true for a large swath of this continent. So I’m also in this weird thing of, babesia is related to… What’s it called? The thing where the medicine you take gives you creepy dreams.

Adam: Oh, malaria.

Brianne: Yes! Babesia and malaria are related infections. And babesia gives you air hunger, actually. And night sweats, which malaria also does. So that’s on one side, and bartonella which I forget what it’s about. But they’re all different, but all tick borne or including tick borne. So he’s like, “This is probably a factor, but also the mold compromises your immune system.” So, my first western blot that I had was indeterminate, but certainly some of the lyme-specific ones were positive. So he’s like, “This could mean something. Or it could mean nothing, because your immune system is so fucked up from the mold.”

Adam: How did they discover the mold? Did he literally say, “This looks mold-like.” And then you had someone come to your home?

Brianne: So, yeah. Mold is a really fun rabbit hole to go down. So we started to wonder about the house just because I read that book. And I know there’s an immediacy thing, where you read a book and it makes you wonder about a thing. But also my two really obviously sickest two-week periods have been after spending a week away from this house, and that seems strange. But I could also be burnt out from travel. And so we were kind of wondering anyway, just because of that. And then there’s a couple different tests that you can do. So on the one hand, there’s a mold antibody test, which I think many, if not all of them were positive out of range. But then there’s also a mycotoxin test that you can do, and just using the word toxin is another thing that’s really hard, because it’s a really thing but it’s also a health blogger thing. But some molds produce toxins. I mean, they all produce something. But so mostly when we think about mold in health, we’re thinking about the mold spores, which are the live part of the mold, which can impact respiratory stuff. But some molds also produce toxins, and this is true, and it’s extremely understudied, which she talks about a lot in Through the Shadowlands because she’s a science researcher, and so that’s kind of cool. She said they haven’t done research about the neurological effects of mycotoxins, and she’s like, “I tried to talk to people about it, and I was literally hung up. I don’t think of myself as a tinfoil hat science person. But there’s something going on here, and it probably has to do with the fact that insurance companies don’t want to cover mold remediation. So they are actively funding a ton of research that will discredit any research suggesting that mold causes chronic health problems.”

Adam: It’s so funny how tinfoil hat-y it sounds. I’ve literally used those words to doctors, being like, “I need you to understand before I tell you any of this story that I am not a conspiracy theorist. I need you to know that I don’t believe the internet. And everything I’m going to tell you is based on my objective experience. None of this has been read off a website.”

Brianne: Yeah, like I’m not out there looking for stuff to get upset about. But so then the mycotoxin test basically can tell you… it’s a urine test. And so the way your body works is that we do have a detoxification system. So when there is toxic shit in your bloodstream, it gets stored in your fat cells and and then at whatever rate your body can handle it is processed by the liver and kidneys. And so you can test for how many mycotoxins you are peeing out. So basically, what’s being processed by your liver and kidneys. And I think a tested for four, and also they were all very high and one was especially high. But there isn’t a one to one relationship between mold species and mycotoxins. So just from that test alone, you can go okay, something’s happening, but I don’t specifically know what’s causing it, because it could be a few different molds producing this thing. But we did have a mold test done in our rental house, and this was also super frustrating. I wasn’t there for either of them, so my husband was there. But the first guy who came in was the guy that my doctor recommended, and our landlord didn’t want him to drill holes in the walls, which is understandable. But he was walking around with a moisture detector. So a normal amount for a wall is up to about 14%. But all of the walls in the back of our house we’re at about 100, like the thing went all the way up. And so the first mold inspector was like, “I’d really love to know what’s in these walls.” And the landlord was like, “No thanks. I don’t want to pay for that. And also we’re going to get a second opinion.”

And so he found a different mold inspector who came in, who was just some tech who didn’t know about mold. But they ran probably an ERMI test is the standard test. It’s just like, what spores are here? And we got that back and had no new information. But what happened much later was we moved in with my inlaws for like, four months because we didn’t we didn’t know… Well, we’re very lucky because they live outside Boston, but they have a house in Rhode Island, so we didn’t have to live with them. But we didn’t want to rent a new apartment because we didn’t know what to look for. But we ended up eventually looking for a house and we had an environmental inspection along with the regular inspection, and that mold inspector looked at our San Francisco results, and he was like, “Oh, this one here, chaetomium, that’s a toxic mold.” So there’s no acceptable lab range for this mold. So most molds, of course, it’s not really possible to have a totally mold-free environment. And there’s no reason to want that, it’s normal for mold to be in the environment, like yeast. But this one is not acceptable and the spores are super heavy, so whatever it tests as, there’s more of it than that.

And then at the same time, my inlaws had a mold test done at their house and my stepdad had a mold test on at his house and on his paperwork on the standard boilerplate about how to interpret the results it basically said the same thing. It was like, “So we’ve put what we think are acceptable lab ranges, but please know that for these two mold, which is stachybotrys and chaetomium, there is no acceptable level.” So although we had whatever relatively low levels of chaetomium in one of the bedrooms, that mold inspector should have flagged that as there should be none. So now, I went through molder mediation treatment, which is I don’t know, a little bit weird. But my neurological symptoms are gone, so that is good.

Adam: What is it?

Brianne: What’s mold treatment? It’s basically enhance your detoxification pathways! So, yeah, who knows. Basically, I take, what’s it called that helps with your liver. And it is in a goop form.

Adam: It’s not like heavy metals, where you get chelation?

Brianne: The process is… And this is why it’s hard, because it is true that when you have something that your body doesn’t like in your bloodstream, it does put it in your fat cells. It’s also the same when your hormone levels are really fucked up or whatever. And so you take glutathione, that’s what it’s called. So glutathione is something that your body naturally produces. But if your liver is overloaded, then you don’t keep up. So you supplement with liposomal glutathione, which is basically helping your liver process the shit out of your bloodstream so that it stops putting it in your fat cells because it needs to be not in your body anymore. And then I was also still, and this is the weird part. I went on prescription antifungals again for a long time, and that helps, so I don’t know what that means. If I just am prone to a thing, or?

Adam: Yeah, I think about this too, with whenever I have to now. Because I get what I would call sick infrequently. I don’t even know. I haven’t been sick in years, do you know what I mean? I haven’t been like, “I have a fever and a runny nose.” I haven’t had that since I was a child. And I think it’s something to do with how my immune system works now. But whenever I end up taking antibiotics for any reason, like I took them when I had my wisdom teeth out, I took them when my doctor was like, “You’re fucked up.” It seems to do something. But I’m like, “How is this related to the picture?” And you never find out.

Brianne: Yeah, like I don’t know what that means. Because I don’t know if, like candida overgrowth is a weird thing.

Adam: Is it real, yeah.

Brianne: It seems to be an internet thing. But I know that every time I’ve taken antifungals, it’s improved everything about everything.

Adam: Can you take antifungals indefinitely, or is there a reason you can’t? Like some medicines you can’t, you know.

Brianne: So yes. So the prescription-strength one that I was taking, I’ve taken nystatin and the most recent one was fluconazole. You have to have your liver liver numbers checked every month I want to say, so it has a risk of causing liver damage for whatever reason, I didn’t look it up. But there’s also, and this is also in the interesting fringe thing, is that tea tree is antifungal and caprylic acid, which is in coconut oil, is antifungal. And the different fungi, I guess, are susceptible to different antifungals. So you can pulse through them, basically, if you wanted to. Also, I think this is why for me I do better when I’m on a low-carb diet. I just do. And it sucks right now, because that is the crazy phase thing. But I notice a huge difference pretty much right away. And a gross weird thing is that when I eat sugar, my mouth tastes bad. Which I think suggests that like there is either a bacteria or a fungus that’s just a natural part of my makeup that is producing a byproduct that I don’t like the taste of. But that sounds nuts and probably doesn’t matter.

Adam: Yeah, I wonder.

Brianne: But basically last year, especially for the month of September, which is when we were still in the house and hadn’t put any of it together, and I was doing really, really poorly. I could barely walk, I wasn’t leaving the couch, I had just stopped working. I was like, “This might just be it.” So it’s one thing, my current this just might be it is that I might always need to go to bed by ten. And if I don’t, I’ll be in pain. And I might always need to pay more attention to what I eat than other people. And I might not be able to, whatever, be as spontaneous. But I can have a mostly functional, if slower, life. But then it was like, this might just be it like. I have my phone and I have Criminal Minds on netflix and this might just be it. I got into new corners of the internet than I’d been in before, which is definitely more chronic illness related. I used to run a storytelling event in Toronto, and it still happens without me. But I spent a lot of time doing workshops with people, and it was specifically targeting things that we experience that we don’t talk about. So it was a lot of things about grief and a lot of things about mental health and a lot of things about dating and relationships. And it’s called Stories We Don’t Tell, but that was the point. And so I got into these other corners, and I was like, “Fuck, it is unreal to me. It is completely wild how common it is and how invisible it is.” And not just because you can’t tell that somebody is sick or disabled, but because of how many people are homebound. So it’s like people are just disappearing from the world and don’t have a good language to even talk about it because of the thing that came up a lot today, but it comes up all the time. When I say I’m tired, what I mean is really different than when someone else says it. But there isn’t really a word to distinguish.

Adam: Yeah, it’s interesting too, because I think about… I’m listening to what you’re saying and how it physically limits you. One of the problems I always had was I feel like I’ve lost so much context on what is safe. After the hospitalization event, because it was in such close proximity to me physically exerting myself. It sounds like you get to a point where you will pass out eventually. And I feel like I haven’t pushed myself that far. But I’ve pushed myself far enough that I was hospitalized with a heart issue after running around all day. I feel like I don’t know what the appropriate boundary is.

Brianne: Like, what are the warning bells?

Adam: Yeah, like maybe I should be pushing myself, because every moment that I don’t have a serious condition happening is in my head to some extent. And I don’t know how to set those, it’s a very hard boundary to set when these things are all hidden. I don’t know what, if any, maybe I’m not doing any damage.

Brianne: And I think it’s protecting it for yourself and then also defending it. Like if you decide on a boundary, defending it when other people push it. Which I don’t have an answer to at all, because I’m terrible at that. I’m terrible at it with food, I’m terrible at it with all of the things where I know what will make me generally feel better if I’m in my own environment. But if I’m not in my own environment, I’m so eager to participate in whatever is going on, because it’s nice to do that. But I can’t predict well what will cause a crash and what won’t.

Adam: Yeah, people also I think, just certain kinds of symptoms are… like neurological symptoms I think are particularly alienating because I don’t want to talk about them but people notice something is up. And then it’s like, is it better to be out trying to pretend this isn’t happening, or better to excuse myself and leave?

Brianne: Yeah, just like… time to go to bed now. And I also hate… at one point last summer in the middle of this, I volunteered at an adult summer camp for women. So I volunteered at that, and it was a lot of fun. And I didn’t sleep well, and I’ve gotten better at putting myself to bed early, even though I want to stay up late when people are staying up late. I’ve just gotten better at being like, “If I don’t do this, I’m going to shut down, so it’s not worth it.” But I had a tremor the whole time because it would get much worse when I didn’t sleep well. And one of my good friends was there, and she kind of knew, but she didn’t absorb any of it. And I had earlier in the summer kind of said here’s what’s working for me right now: I cannot hang out after seven. I cannot… all of these things, like a long list of what’s not working. And she was like, “Okay, sure.” And just, you know, turned away from it. And then she gave me a hug for some reason, and she was like, “You’re really shaking!” And I felt like, “Yes! I am! My body is not working! That long list of things that I gave you wasn’t because I was just trying to make some fun rules.” And by the end of the weekend, as a volunteer we were doing cleanup. And after three days of being in this immersive environment with people, I just couldn’t stand any more. So I was like “I’m going to go lie down on the ground while you guys do this. And I’m gonna hope that you have enough context to not think that I’m just an impatient jerk, but I can’t do it anymore.” It’s just so difficult to communicate it to people.

Adam: People want to not believe you. And not in a rude way. away. There’s some kind of weird mental block when it comes to health where like, I feel like it almost comes from a good place, like they want you to be wrong. They want you to be better. Like, “No, you can overcome this!” And then eventually though, that turns into bitterness because they’re just like, “You don’t want to overcome this. You don’t want to just get over it.”

Brianne: “You’re not trying hard enough.” And I think that one, they want that for you. And two, they don’t want to believe that’s something this random and debilitating that they’ve never heard of could happen, because if it could happen to you, it could happen to them. Which is more cynical, but…

Adam: Because imagine how different your experience of doctors is than theirs. Most people have never experienced, they’ve never had to have that faith severely broken. Like, maybe they’ve had a bad doctor or a weird experience. But they’ve never been as disrespected probably as you have by a doctor.

Brianne: And just dismissed. I mean, at that time a year ago before I knew what was going on, but after I had just walked 15 minutes straight for the first time in months. We were in New York and it was like one of my friends’ birthdays. So we went to a bar in Brooklyn of all places, and I had just decided to do this podcast, I think I did my first two interviews then, but it took me this long to actually get it out there because of everything else that happened. And I was talking about it because a couple people there knew that I was starting to do this. And some guy that I’ve met a couple times, but don’t really know, he was so confused by everything about it. So I was like, “Well, you know, people end up going to a lot of doctors, and it’s just tracing that story because it’s so difficult to get a doctor to take you seriously.” And he was like, “if a doctor doesn’t take you seriously, why wouldn’t you just find a better doctor?” And I felt like, “Oh my god. Your experience of health and medicine is so far away, and either you don’t know anybody or anybody that you know has not been able to tell you about it, because that’s not how everybody experiences medicine.” And it’s a really big problem because there’s a huge empathy gap that you could not even realize that there are people who are sick in a way that doctors just ignore them.

Adam: Yeah, I do also wonder how many people are just very, very sick but are not in a position to realize that they are not similar to other people and are told that they’re… I’m imagining someone in the same situation I’m in without the means. On the one hand, they’re suffering. On the other hand, maybe they just don’t address it, right? That’s something that makes this challenging for me. One of the things that I’m ashamed of. Yeah, if I didn’t have the resources, maybe I just wouldn’t realize that most people didn’t feel like shit and I never would’ve found out anything that I know about myself. I would just be living with it. I would just be alive, feeling shitty, and it wouldn’t matter. There’s something almost oppressive about the ability to dig in. It gives you the responsibility to do something about it. And that’s an alarming feeling too, because that’s very validating of the people who have the get-over-it mindset. They’re just like “Yeah, many people like you can’t afford to see a doctor.” And they’re right, that’s probably true.

Brianne: I think it’s true, and I also think plenty of people are doing way worse than we realise, way more out of sight. So there are a lot of people who are living on social assistance who have been diagnosed with fibromyalgia or chronic fatigue syndrome or any of these catch-all diagnoses who don’t have the means or social capital to go out and dig deeper and are just at home. They don’t leave their houses. And this on the internet, like in facebook groups, this is the sad edge of chronic illness to me. Not that I’m out here demanding optimism from everybody, because I don’t think that’s the point. But there’s this whole other thing of like, “I’ve been saving up for months to go see the only specialist in my state and one, he might recommend a treatment that I can’t afford because.” Well’ you’re exactly in that position. But I’ve talked to other people who are like, “Yeah, we were out of pocket $60,000 for my medication for a year.” So you might be able to save up the money to see a specialist, but that doesn’t mean you’ll have the money to pursue treatment.

Adam: Yeah, I do feel jaded by the experience now, you know, because of the benefits I’ve had. It makes it so hard for me to step back and really look at the issue as something solvable. What allows me to accept it is that I’ve been fortunate. Like what allows me to accept it is that I’ve been financially lucky.

Brianne: Yeah, and that’s huge. I have been too for sure. I mean, last September when I was barely functioning and didn’t know what was going on, my father-in-law was like, “I need you to do whatever it takes.” Because he worked in finance, and he was like, “Plenty of guys that I know just go to the Mayo Clinic for their executive check up. It’s the one where you just pay five grand and for three days they just run all the tests.” I mean, it’s for 65-year-old men. But he was just like, “Go do that. I don’t care what it is, go get whatever tests that you need to get done so that somebody can tell you what’s next.” And of course, one: super privileged, two: that tells you about his outlook that he thinks that that’s how it goes because he hasn’t experienced it not going that way. But I also think there are a lot of people who live… it’s weird because that also creates hopes. So I think there are a lot of people who don’t have access to health care who think that that is what will make the difference.

Adam: Right, that there’s a doctor somewhere who can figure it out.

Brianne: Yeah, but I have talked to enough people, including you, but I’ve talked to other people too, where access to doctors isn’t the problem. There’s still a problem. Which, I don’t know. I don’t think that it means anything specific, but I think it matters.

Adam: Yeah. Yeah, I do wonder. I’m in a very weird place with how much have I been guilted into thinking that this is fine? You know, I really feel like I’ve lost all sense of context. Like, what is fine? What is not fine? What should be sucked up?

Brianne: Yeah. Oh yeah. I do a lot of gut checking where I’m like, I really am sick. I didn’t just decide that I like lying around or that I really love Mandy Patinkin or something. No, I want to be working because I still don’t have a full time job. I am doing contract work or whatever. I have my own stuff that I’m doing but I don’t think that it’s a good idea for me to recommit to a normal schedule, because I still wake up in pain one out of every nine or ten days.

Adam: Yeah, it is funny when I… every once in a while I’ll get reminded. I was talking to a friend recently, and I was talking about how on some days when I can’t get out of bed for a long time, and I’m like, “Yeah, I think I’m depressed.” And my friend’s like, “I don’t know, I’ve been depressed and I eventually can get up.” And then it puts in context, well, yeah, you do have these other health conditions, maybe it’s related. You don’t feel depressed. And I start to wonder again. Like, yeah I guess that could be a concrete symptom, but…

Brianne: It doesn’t feel like one.

Adam: Yeah, you don’t want to… I can feel the skepticism when I tell people.

Brianne: Yeah, the answer is to only talk to people who have experienced chronic illness to really adjust your context.

Adam: I feel like even then, it’s such a strong… the desire for other people to tell people, “Have you tried this? Is it this?” is so powerful. Even with other people, I feel like it takes something. So there’s a guy that I work with who’s got what’s called complex regional pain. He had a surgery that went wrong with his ankle and developed a chronic pain issue. And he’s at all times in a state of devastating pain. Like he’s on painkillers 100%. He recently had a box put in his spine to do some kind of nerve therapy where it numbs the nerve by sending electrical pulses down it. There’s something so concrete about his problem that it allows me to really anchor on and be like, “That guy must know what it’s like.” But I feel like people with my story. I feel like they feel the urge. It’s like the same thing as when you do bias adjusting for yourself when you’re reminding yourself of all the biases to be careful of when you’re listening to someone speak. I feel that way when I talk to people with similar experiences to mine, where I’m like, “Picture yourself, this is what you sound like. This is not fake.” And it’s so much…  it feeds into my like, I understand why doctors don’t believe me, you know, my self-pitying attitude. I get it, they shouldn’t believe me, that kind of thing.

Brianne: Yeah, and I understand what sounds weird or nuts about it. Not that you’re asking for one, but I definitely don’t know the answer to that. But I do think that’s why I like finding books about it that are not necessarily advice based. Because I think, this is the health blogger thing, but it’s a lot of people who write too. Once you find something that works for you, for a lot of people their inclination is to be like, “Well, everybody should try this because I was in so much pain before and if it helped me, I can’t keep that to myself. I want it to help everybody.” And I understand that inclination completely, but what we need is better research. Like in general. And so I think that’s an interesting thing. Talking to people when people are able to check that a little bit. But then it’s hard when you’re like, “Okay, but I don’t want to tell people what helped me, because I know that it sounds nuts.”

So I’ve had a chronic sinus infection forever. And the guy was like, “Okay, I don’t want to put you on antibiotics because you’re on antifungals. And doing both is a problem because when you take antibiotics, you’re creating room for fungal overgrowth, so we have to manage one before we do the other.” It was the same with,”You might have lyme, we’re not putting you on doxy because we have to treat the fungal infection first anyway.” And so he was like, “So here’s what we’re going to do. You’re going to do steam inhalations of tea tree and eucalyptus oil.” And he’s like, “Just try it.” And I did, and it fucking helped. So I’m like, okay, great. There are a lot of people on the internet who are on both sides of the essential oils thing. People who are like, “Nobody needs medication when you can use essential oils.” And people who are like, “Never talk to me about essential oils, you idiot quacks.”

Adam: “It’s the devil.”

Brianne: Yeah, and I’m like, “Honestly, I woke up and my nose was running for the first three hours of every morning for eight years. And it doesn’t do that anymore. And the only thing that I did was inhale eucalyptus and tea tree every morning.” And I don’t know.

Adam: And people still don’t want to… it’s still so hard to confront someone with that. Even with the proof and knowing you experienced it. Because I feel like they automatically project you into exactly what you were just saying not to do. They throw you to like, “And so everyone should do it!” You know, like they put you in that position already. Like, “Oh yeah, you’re probably on the internet telling people to inhale this shit.”

Brianne: Yeah! And I’m not! I mean, I use twitter for this kind of thing, but for saying that, “A weird thing that happened is that this worked for me.” Never being like “Everybody go out and do it!” But it’s hard, because it’s hard to talk about it, because it undermines your credibility. Like, as a person.

Adam: For sure. Yeah. So I really feel like for me, the whole idea that I have a broken immune system, but it’s not a disease thing, was in all this time not something I had thought about. You know, you had said that you feel like better research is a direction to go down. Do you feel that… it really shattered this illusion I had around the idea that there are undiagnosed conditions in the world and made me lean more towards the idea that people are broken in different, potentially unique ways.

Brianne: I think when I say better research, I think I mean more in terms of lifestyle adjustments and other kinds of treatment as opposed to learning how to name every condition. I mean, I think someone’s going to want to do that anyway, so I’m sure that that research is happening. But my faith is definitely broken in the pharmaceutical industry.

Adam: For sure.

Brianne: And the way that that informs how diagnosis happens, like doctors only want to diagnose something that they already know a drug to prescribe. That’s been my experience. And so I’m not… and this is again, this is where it’s hard to talk about. I’m not out there being like “All drugs are evil! No one should ever take a medication!” But at the same time, I’ve had other stuff that I didn’t talk about where I was diagnosed with something that I didn’t have, and then told that I would just have to take a medication for the rest of my life. And then when I stopped taking that medication and did some other stuff, it cleared up on its own, which the doctor expressly told me that it wouldn’t. So here’s what I think, it’s fucked up that I can follow advice from the internet because I’m desperate, and sometimes it works. What if we invested some serious capital in figuring out what weird internet advice worked?

Adam: Yeah. I mean, it’s interesting. I guess when I was saying the naming thing, I meant less like labeling and more like… way in the beginning, I used to look at forums of people and be like, “All of these people probably have the same problem.” You know what I mean? Like there’s probably a few things out there that are causing these that we just haven’t discovered yet. Like some biome thing or some some constellation of problems that lead to this constellation of symptoms. But now I’m more of the mind that perhaps these are not at all… the scarier thought in a way is no one is using the same words to describe anything. And all these people with similar symptoms are very unlikely to be treated with the same thing.

Brianne: And also, because of the language problem, we can’t actually know that anybody needs the same thing.

Adam: Right. So, now I’m wondering more like, how far along does personalized medicine have to get to be effective? Right ? Because it’s like, I don’t lay awake thinking about this, but my brain does this funny thing where I think about objective knowledge. So objectively, there’s a “the thing that’s wrong.” Like I’ll think about this in the shower, “Right now you’re dizzy, there is literally a cause. There’s some objective cause.” So if you could zoom in, do a… what was that show called where the bus gets really small and the teacher takes them…

Brianne: The Magic School Bus.

Adam: Yeah, the Magic School Bus. So if you could Magic School Bus this, there’s a thing in my ear attached to a nerve to my brain and this constellation of brain systems makes you feel like this. And you know, there’s a literal something.

Brianne: Well, and with shower dizziness specifically, which I understand was not your actual question. Shower dizziness specifically for me is related to POTS,, which is a form of dysautonomia. Which is like, you’re upright and it just got hotter, and now your autonomic nervous system is mad. But being able to call that symptom POTS still doesn’t resolve anything because POTS is a symptom. So there’s that S for syndrome again.

Adam: Yeah, exactly. And then you know, it’s funny because then you get closer and further away. I had a doctor who recognized that my blood pressure changed 20 points when I was laying down versus standing up. And he’s like, “Yeah, you have some kind of autonomic nervous system dysfunction.” So that gets me closer. Like there’s “objective explanation.” There’s a there there, there’s something happening. But then after this whole thing with the Dr. Najjar stuff, it seems very likely that many people are just… perhaps the diversity of underlying causes is unfathomably large to the point that most of these people who are suffering would not be solved with better doctoring. There needs to be a fundamental shift in the way we are able to diagnose.

Brianne: The way we think about what that even means.

Adam: We would have to have a much deeper understanding of the mechanics of a form of discomfort to treat these things. And there’s so many avenues. It could be a state problem, like literally the state of your body right now. It could be some burden is imposed on your body that if we just knew where to look, we could find the bacteria or the mold or whatever. It could be a genetic thing, something’s flipped on or off for more likely 50 things are in a pattern that’s bad. You know, all of these different things. One day in the year 3000, when we hopefully still exist. You’ll get in a machine and beep bop boop, it somehow checks these things. But today there’s absolutely no connection between any set of objective states that we’re able to measure and of a particular bad outcome.

Brianne: And most numbers that we have still don’t really mean anything. Because plenty of people who test certain ways… Okay, so a thing that I have not read very much about that I’ve heard is the way that we used to think about alzheimer’s disease is that it’s plaque on the brain. And up until very recently it couldn’t be diagnosed until autopsy, and most people who’d been diagnosed with probable alzheimer’s were never autopsied. So this was this hypothesis that was out there that not that many people were doing the legwork on. And as it turns out, there are a lot of people who have plaque in their brain who do not show symptoms of alzheimer’s. So it is looking more and more likely that the plaque and the alzheimer’s or the plaque and the dementia are not related, we just thought they were because it looked like an explanation.

Adam: They’re co-correlated with something.

Brianne: Yeah, and so in the same way being in this family of fatigue things… so chronic fatigue syndrome is a great way of looking at it. Because it is certainly a cluster of people and a cluster of symptoms. And chronic fatigue and fibro, which are effectively the same but one is with pain. And the things that seem to be in common are mostly infection related. So it does look like an immune problem. But could it possibly be what you’re saying, incredibly unique. So, yeah, I was indeterminate for lyme, positive for bartonella, positive for babesia, but also positive for both of the mono viruses. So my CMV, one of the indicators, so the old one not the new one was very high, and also for my EBV. So cool, cool, both of those. But I had mono. So is this just telling us that I had mono or is it telling us that my immune system is doing a bad job right now? It has certainly been compromised, but is this what’s compromising it? Or is this just a number that isn’t impacting anything?

Adam: Yeah. We have very blunt tools. There’s only so many senses, right? So we have these very blunt tools for communicating what’s wrong. Like, think of the wide array of “my stomach hurts.” That’s a language problem and a sensation problem. Because the language problem is hurts can describe a million different things. Are you nauseous? Is it stabbing pain? Is it blunt pain? Is it discomfort? So that’s the word problem. And then the sensation problem is that my body doesn’t have a sensation for “I have a tumor.” I don’t have a sensation for “I have an ulcer.” I just have these blunt sensations, so it makes me wonder, too, all of these people who share symptoms. I mean, maybe one day we’ll have a level of symptom detection that’s beyond subjective. But until that point, you can’t explain something to someone who hasn’t experienced it. There’s no way of comparing symptoms across patients.

Brianne: Yeah, across people or to doctors. And also in that specific example, and English is worse for this, stomach is not a good word because we don’t use it anatomically. So there is your stomach organ. And then there is the region of your body that we call the stomach, and they’re not even in the same place.

Adam: Yeah, which is funny.

Brianne: Some other languages have different words for that, which is confusing. But if you say that your stomach hurts, it could be just about any of your organs, most people aren’t distinguishing there.

Adam: Yeah, so it makes me wonder, how diagnosable is anything based on symptoms?

Brianne: Well and symptoms are so… a different book that I have over there called Why Can’t I Get Better, it’s definitely lyme related. But he talks about it as MSIDS, which is basically a multi-system… the I is probably immuno.

Adam: Immunodeficiency.

Brianne: Yeah, basically. But he’s a lyme doctor in upstate New York. But he’s not like “Everybody has lyme!” He’s just like, “Here are the things that are really common among all of the different people that I see.” So they express differently in all these different ways, but there’s partly environmental. The book is divided into all this different stuff, and it’s super super comprehensive because he’s just like, “I don’t think there’s one thing, I think it’s that we’re all being impacted differently. And our environments have changed so much. Our food system has changed so much. All of these things. And not everybody is affected, and that’s great. But more people are affected by all of this shit, and it’s really hard to parse out. But here are the tools that we have, which aren’t always testing. Sometimes the tools are trying out treatments and seeing if they work.” Like glutathione which is the thing that I take, one of the things that I take, has been very helpful for me. And he has examples of doing it intravenously where he’s like, “This person came in and she looked drunk because she could barely walk and we put her on an IV and then she could walk and talk again. Her liver got backed up. Why? We don’t know. But she has a body where that is what happens. Her liver cannot keep up with her toxic load.”

Adam: Yeah, I mean, that’s exactly the kind of thing I’m saying. But, I agree. That’s just her liver was broken, and not in a way that’s like, “This is cirrhosis” or not a specifically prediagnosed thing. It’s a functional deficit.

Brianne: It’s systemic.

Adam: Yeah. We went way over time, I’m going to give you some of your life back.

Brianne: Yeah, it’s also definitely my bedtime.

[guitar riff]

Thank you for listening to this bonus episode of No End In Sight! I’ve still got more interviews recorded for future episodes, so make sure you subscribe on iTunes, Stitcher, or wherever you get your podcasts.

Happy Thanksgiving to all of y’all in the United States. If you’re spending the holiday with other people, I hope you can enjoy the day with as little stress as possible. I for one will be trying to balance my need to follow my diet and go to bed early with my strong desire to participate in one of my favorite holidays. To be honest, this will probably mean drinking wine and staying up past nine, but avoiding the grains on the table. 

I’ll definitely be making myself some sweet potato biscuits. If you have any excellent alternative Thanksgiving dishes, you can share them with me @bennesb on twitter and instagram.

If these stories have been resonating with you, then I’d love to hear your story. At this point I’ve interviewed a lot of straight cis white women, and I’d particularly love to talk to people with other perspectives. 

I also have a small Facebook Group called Chronic Hustlers, for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we dig into all the questions about working and running a business while prioritizing your health.

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. I’m running a buy one get one free sale for Black Friday, so I’d love it if you checked us out at digitalartisanal.com