(Julie Rehmeyer has experienced the ups and downs of Chronic Fatigue like few have. After years of gradual deterioration her health took an enormous and mysterious dive when she awoke one morning in 2006 barely able to walk. Six years later after work with an ME/CFS specialist failed to provide much help Julie tried mold avoidance. A month in Death Valley appeared to accomplish little but a strict mold avoidance protocol afterwards worked and over the next two years she slowly recovered a substantial amount of her health. Julie still has limitations and must be careful about mold but is now able to exercise and run, travel and work full time. She is currently working on a book about her experiences and the politics and science of ME/CFS. )
How long ago do you think your ME/CFS began?
My health began deteriorating in 1999, but it didn’t turn into full-blown, CCC-style ME until 2006.
(Julie woke up one morning in 2006 barely able to walk (see below). See Julies blog here for more on her Chronic Fatigue Syndrome story)
Were you able to track back your gradual onset or your sudden collapse to any exposure to mold?
I first started getting CFS when I was living in travel trailers while I built my house, and I now know they were moldy (like pretty much all old travel trailers) though that wasn’t obvious at the time. I moved to Berkeley in 2006, and Berkeley is notorious among those who are hypersensitive to mold for having some kind of widespread outdoor toxin that makes us really sick. My illness began progressing to the point where something was clearly really wrong around the time I moved.
My full-on collapse came at the end of 2006, when I was living in DC (which probably has a similar outdoor toxin) and had just gotten a hepatitis-A vaccine. I think the vaccine was the last straw, rather than a major cause in itself; I was generally deteriorating over the previous months.
Your story reminds me of Joey Tuan’s – he tried EVERYTHING before he tried mold avoidance – and then it worked (lol). You’d been to see one of our best – Dr. Klimas – without getting really good results.You’d probably experienced the best traditional medicine had to offer yet you still had trouble walking and your health was still poor. Was it only after that didn’t work out that you felt like turning to something like mold avoidance.
Oh yeah, absolutely. Mold avoidance sounded pretty kooky to me — until it worked. And Joey was a huge inspiration to me! His blog post about how he could exercise again was one of the things that made me consider mold avoidance in the first place.
Did a doctor advise you on mold avoidance or did you do it yourself?
I primarily relied on the help of other patients.
I wrote a story for Slate about ME/CFS in late 2011 while I was terribly, terribly ill — it was a tiny window when I was barely capable of it, and writing it left me barely able to make it from bed to the bathroom for a week after I finished it. But as a result of it, I was contacted by a fellow patient who is also nearly recovered through mold avoidance. Around the same time, my primary care doc mentioned the possibility to me that mold was contributing to my illness, and he gave me Shoemaker’s “Surviving Mold.”
I found the book nearly unreadable, though, and I probably wouldn’t have pursued it further (certainly not in the intense manner necessary) without this person’s help. That’s especially true because I was initially skeptical that mold could have anything to do with why I was sick: I’d gotten sick while living in dry New Mexico, I’d never lived in an obviously moldy building, I’d lived in many different houses during the time I’d been sick and I’d never gotten dramatically worse after moving, I’d never suddenly felt much worse when I walked into a building. It just didn’t sound like me at all.
She explained that I might not be reacting noticeably because my belongings could have gotten contaminated — particularly likely since I’d lived in Berkeley, which is so notoriously bad for folks who are sensitive to mold — and if that were true, I would be so steeped in it that I would never notice any variation. She suggested that a way to figure out if mold was contributing to my illness was to get clear of it by going to a particularly pristine desert for two weeks with none of my own belongings. The critical thing wasn’t whether I felt better while I was there — that might or might not happen, she said — but to see if I reacted to my own living space when I got back. If I did, then mold was almost certainly contributing.
Lacking any better ideas and figuring that if I had to have this damn disease I could at least have an adventure, I decided to try it. I seized a moment when I thought I was just well enough to do it, borrowed a bunch of stuff and swapped cars with a friend (hoping his stuff wasn’t problematically moldy), bought some new stuff, and went to Death Valley.
Extreme avoidance is a very challenging path. Some people are too sick to do it at all, and it’s especially difficult if you have kids or a partner who isn’t amazingly accommodating, flexible and supportive. Frankly, it’s a lousy solution — but compared to no solution, it’s pretty darn great.
While I was in Death Valley, I felt slightly better, but well within the range of normal variability. Before I went home, I went to Reno to visit Erik Johnson, the “mold warrior” who was one of the famous Tahoe cohort and who was the first ME patient to figure out the role of mold in his illness. He took me to some bad buildings around Lake Tahoe to help me learn the early symptoms of exposure.
I was extremely skeptical at that point, not being at all sure that this theory applied to me, and I was even more skeptical when I didn’t seem to feel much in the bad places he took me to. But indeed, a few hours after my “mold tour,” I could barely walk (a symptom I hadn’t been having much at that particular period). That was the first indication that I was hypersensitive to mold. I was very excited and fired off emails to friends: “Woohoo! I can’t walk!”
Then I went home to New Mexico, which I’d moved back to from Berkeley. My house was rented out and I was living in those same travel trailers I’d been in when I first started to get sick. Thirty seconds in my trailers was enough that I could barely walk a a few hours later. I also had more immediate symptoms that weren’t quite as acute.
Learning to recognize subtle symptoms of exposure is really critical. I found that after a while of practicing avoidance, I had no trouble at all recognizing when I was exposed because my reactions became quite strong, but early on, they were subtle and easy to miss.
What kind of mold avoidance did you do?
The critical thing wasn’t whether I felt better while I was there — that might or might not happen, she said — but to see if I reacted to my own living space when I got back. If I did, then mold was almost certainly contributing.
Extreme. When I got back from Death Valley, I found that I reacted strongly not just to the trailers but to my belongings in the trailers. I got rid of nearly everything that had been in Berkeley or the trailers. Luckily, the person renting my house at the time happened to break her lease and move out, so I was able to move back into my house, with just my camping gear.
Even more luckily, my house turned out to be mold-free and in a location with good outdoor air. The hardest part of avoidance for many people is that they have enormous problems finding a house they can live in. And if instead of living in my trailers when I returned from Berkeley, I’d moved back into my house with all my Berkeley-contaminated stuff, it might have made it unworkable for me for years. So I was hugely blessed.
After I moved into my house, I was extremely careful to keep my house good for me. I washed my clothes and showered as soon as I got home after going out, and I was vigilant in preventing contaminated objects from coming in. Over the next year, my reactivity got crazily extreme, to the point that once when I was stuck in a moldy tow truck, I went into convulsions. After a year, the reactivity went down, and while I still react, it’s not extreme or frightening anymore, just unpleasant.
Did you do any tests for mold and if so what were the results?
Yes, I did Shoemaker’s tests, which showed the typical pattern of inflammation for mold-injured people. They also showed that I’m genetically susceptible to mold. I didn’t test any buildings for mold — my own reactions were proof enough for me.
How long did it take you to see results?
A month after heading to Death Valley, I was able to hike up the hill behind my house, which is a 300-foot climb. I hadn’t been able to do that in about a year and a half. I was astonished and overwhelmed, and I emailed a zillion people from the top of that hill with a picture of the incredible view from there across the Rio Grande Valley, saying, “Oh. My. God.” That was the first indication that this whole crazy mold thing was actually going to make me better.
Over the last two years, I’ve done a lot of detox, and that’s been an important part of getting stronger and more resilient. Unfortunately, detox also tends to make you feel crappy in the short term, so I continued to deal with quite a bit of crappiness thereafter. But essentially, I was very much better very quickly after returning from Death Valley.
Do you have any idea what’s going on with Berkeley? Is it because it’s near the ocean do you think?
I don’t think being near the ocean is the key. Some locations near the ocean are excellent — I felt terrific in Hawaii, for example, and San Diego is reasonably OK for me. Many ME patients report doing well on tropical islands. But I really don’t know what is going on.
Do you need to continue with mold avoidance and if so what do you do?
Absolutely. I can detect when I’m in a moldy building very quickly now, and if it’s at all bad, I get the hell out of there. And I continue to be careful to keep my home toxin-free. It was extremely consuming for quite a while — it takes an enormous amount of effort to learn to detect mold quickly, to be sufficiently careful about protocols to keep your home and belongings free of mold, and to ferret out the problem when somehow your house does get contaminated (which is close to inevitable from time to time). I didn’t do much work for nine months after starting avoidance because it was so demanding. It’s no longer nearly so difficult now, partly because I’m better at it and partly because my reactivity is so much lower that I don’t need to be nearly as careful.
How important is getting the mold out of your clothes? I guess the idea is that you’re become hypersensitive to even very, very small amounts of mold and getting that out of clothes, off your hair, etc. becomes very important when you become hypersensitive?
It’s very important to have mold-free belongings, and yes, when you’re hypersensitive you react to almost unbelievably small quantities of contaminants, and those tiny quantities can be enough to keep you sick. I didn’t even try to save the clothes or other belongings from Berkeley, and I’m glad I didn’t. One thing I did try to save was a winter coat that I left outside under a carport for nearly a year, and at the end of that time, even after having it cleaned, it still bothered me. Of course, it’s possible that some of my belongings could have been saved, but the amount of trouble that can come from a single contaminated item is enormous, and I felt like it wasn’t worth it. Pretty much all that I saved were glass and metal objects, which I cleaned carefully and didn’t have any problem with.
“To me, the main thing to be taken from the success of extreme avoidance for some people is that we need some serious research into the impact of mold and related contaminants in ME/CFS and more generally.”
Did you ever have chemical sensitivities?
Not really. I had a great deal of difficulty finding a bed I could tolerate, and that may have been because of fire retardants or other chemicals in them. I just don’t know. But in general, no. Many people do develop chemical sensitivities in the process of avoidance, but it seems like it’s generally less critical for them to avoid every chemical that bothers them than it is to avoid mold — and especially to avoid the mysterious outdoor contaminant in Berkeley and other places, which seems to be remarkably bad for us.
Do you become sensitive to molds found out in nature or is it usually to molds found in the house? I remember taking a close look at a Joshua Tree and I was surprised to see how much mold was present even in that desert environment. Could something like that be bothersome?
I think that would be unlikely to be a problem for me personally, though people vary in these things. I also don’t have trouble with food molds, though I think I’m in the minority on that among those who are hypersensitive.
It’s clear that species of molds vary enormously in how problematic they are. And the problem may well not just be the mold itself — it may be the mycotoxins molds produce when they go to war with one another, or the volatile organic compounds they release, or the mycotoxins or VOCs that they produce only when they’re eating some particular substance. (I wrote an article about this here.) It’s all, unfortunately, quite complex.
At the moment, the best resources about mold and mold avoidance are paradigmchange.me and the Facebook group “Avoiding Mold.” I have to caution, though, that extreme avoidance is a very challenging path. Some people are too sick to do it at all, and it’s especially difficult if you have kids or a partner who isn’t amazingly accommodating, flexible and supportive. Frankly, it’s a lousy solution — but compared to no solution, it’s pretty darn great.
I think it’s important to understand, though, that extreme avoidance is more valuable as a clue than as an answer. We need to know how big a role mold is playing for ME patients in general, not just the few who have tried extreme avoidance. And even if it turns out that mold is a major player for everyone (which we certainly don’t know now), we can’t possibly have a million people in the US doing this. We need something better. To me, the main thing to be taken from the success of extreme avoidance for some people is that we need some serious research into the impact of mold and related contaminants in ME/CFS and more generally.
The book I am writing will describe my experiences in much greater detail, and it will weave in a lot of information about the science and politics of mold, ME/CFS, and other confusing illnesses.
As you avoided mold more and more you found that you felt worse and your sensitivity to mold went up greatly. Did you experience times of increased health interspersed with these really strong reactions? Is this a common pattern?
Yes. As long as I successfully avoided it, my health was much improved. And yes, that’s a common pattern. The reactions typically were short-lived — showering, changing clothes, perhaps doing some additional detox would generally take care of it, as long as I was pretty quick about getting out of a bad place. Early on, when I wasn’t so good at recognizing mold, I would often feel lousy for a full day, because I’d gotten too big a dose.
Is there anything specific you do to detox? Take supplements? Sauna? Or is it more a matter of making sure that you’re not in contact with mold?
I take a bunch of supplements that are supposed to support liver function, though I’m not confident that they’ve done much for me. Many people find cholestyramine helpful, though I personally didn’t. The things that have been most useful for me are far infrared saunas and, especially, coffee enemas (which sound awful, but man oh man, they make me feel better). Exercise can be helpful too, if you can do it.
On a scale of 1-10 with ten being perfect health where would you say you are now?
Maybe 8.5, but words can convey more than numbers. I’m working pretty much full-time, and I’m living quite a rich and full life. I travel with my husband quite a lot, I’m writing, I socialize, I can exercise, and probably most people who know me don’t ever see any signs that I’m not 100% well. However, I typically wake up in the morning feeling lousy, and I have to detox to get functional (though that seems to be lessening a bit). I occasionally lose a day to feeling bad, and I can’t always figure out why, though I often can trace it to some exposure that I didn’t manage to deal with quickly or thoroughly enough.
I couldn’t do a regular 8-5 office job; the flexibility of my work is key. I can sometimes exercise quite a lot and other times not much; I have to pay careful attention to where my body is day-by-day. And I certainly couldn’t live in Berkeley or many other places. I visited Berkeley recently, and I was amazed at how strongly I reacted to the outside air there: It felt like my entire nervous system was being crushed, and after a while I found it quite difficult to speak. But I was pleased to find that I could visit Berkeley for an hour or two at a time (decontaminating afterwards) without lasting problems.
I still sometimes get very impatient with the process, wanting to not have to worry about this crap anymore and just be well! Overall, it feels a little bit like having a toddler — a toddler’s needs come first, but you can bring a toddler along with you to lots and lots of things if you really want to. Actually, I guess things are a bit better than that now, and maybe it’s more like having a five-year-old. Not quite so demanding anymore. And I’m hopeful that with more time and detox, I’ll get significantly better still.
Lisa has a new blog post with just about everything she knows or suspects about this phenomenon. Much of it is speculative, of course, since there’s no formal research on the subject. But that post I think provides a useful place to start in trying to understand it.
Double Black Diamond Topic
You’re an accomplished writer and you clearly did a lot of work on the blogs yet they ended up on a small blogging site on the internet – not in a major publication. They certainly read like they should be in magazine somewhere. How did they not end up in one?
Yeah, I worked like hell on this piece. It went through at least a dozen drafts, with substantial changes between the drafts, and I started it last November. I don’t even know how many people I talked to about it — well over a dozen, maybe two dozen. I wrote it hoping to get it in a very prominent publication (the name of which I won’t mention), and they held it for two months, deliberating, and then said no. I tried a few more publications and got no bites, and I got to the point where I was just exhausted and felt like one way or another, it needed to get out there.
Unfortunately, placing articles about this illness is really tough. Editors have the same prejudices as the general public and doctors, so typically the starting place is pretty skeptical. And even if they aren’t so skeptical, they often figure that their readers are, and also that readers probably don’t start out very interested. I have an additional hurdle because as a patient, I’m seen as being biased.
The reality is also just so different from what people tend to imagine before they read about it that they can’t quite believe that what I’m saying is true. The narrative that’s in everyone’s minds is that it’s so, so controversial whether this is a real illness, and when I say that actually, among experts in the US, that’s not controversial at all, it doesn’t seem very plausible. All of that is frustrating, but it’s just the way things are.
I ran it in Last Word On Nothing because the site is run by friends of mine, and although its readership isn’t all that big, it includes a lot of science writers, and they’re some of the folks I’d most like to influence. Even in the top science magazines, the quality of journalism about ME/CFS isn’t what I wish it were, because it’s a really hard subject to parachute into as a journalist. The history is complicated and deep and affects everything, and the science is complex and messy and confusing, and just figuring out who the players really are is tough. And then even if you manage to figure all of that out, presenting all that complexity in a linear story readers will be interested in and absorb is another challenge, along with understanding the needs and sensitivities of the various stakeholders so that you don’t inadvertently say something you think is harmless that will infuriate someone. So part of what I hoped to accomplish with the piece was to give science journalists a bit of background, so that they don’t start out cold the next time they find themselves covering something about the illness.
Honestly, this is the hardest piece I’ve ever written. I often write about math, which Carl Zimmer called the “black diamond trial” of science writing, but math is nothing compared to writing about ME/CFS. It’s also immensely satisfying, though, because it really matters. And it has a big impact on me to write about it — it helps me understand what’s going on better, it helps me to integrate and make sense of my experiences, it helps me connect my own experience with that of others and feel less alone. So as much as I would have loved to have this in a big publication, I’m still really glad I wrote it, and I look forward to doing more pieces over time. (Not right away though! I need to make some money and work on my book.)
And maybe I’ll even manage to break into that prominent pub that held my piece for two months. I haven’t given up trying.
- Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome? Pt I
- Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome Pt. II
Julie Rehmeyer is a math and science writer in Santa Fe, NM. She is a contributing editor for Discover Magazine and has written for Science News, Wired, Slate, Science, and other publications. She is working on a book about her experience with ME/CFS and the science and politics of confusing illnesses. She recently wrote about her father for Aeon