Andrew’s Story: 8 Months of Extreme Avoidance allows Return to Hometown

This Q&A with Andrew is broken down into two parts. The first part is the podcast episode listed below this paragraph (please listen to that first). The second part is the written portion which you can find below, in this blog post.

INTRODUCTION BY BRYAN ROSNER:

I am excited to share Andrew’s story. After doing moderate mold avoidance, including taking Cholestyramine and living in his car and avoiding moldy buildings for over a year, he was not making enough progress toward healing and was still extremely sick.

It was only after 8 months of extreme mold avoidance (what is extreme mold avoidance?) in a tent that he was able to return to his hometown again, find a “good enough” house to live in, and continue making healing progress. I find this to be a fascinating, encouraging, and inspiring story.

(I, Bryan, have also experienced profound healing benefits from extreme mold avoidance).

Of the many interesting aspects to the story, two of the most important, in my opinion, are that extreme mold avoidance was what “pushed him over the edge” to be able to remain in a healing state once back to civilization, and that he actually was able to move back to civilization at all.

It is also noteworthy that “extreme” mold avoidance is special. It allowed Andrew to attain a level of success that “moderate” avoidance did not provide.

I think there are a LOT of really important concepts, wisdom, and data in Andrew’s words, so I encourage people to read this slowly and carefully and probably more than once. I think I could name at least a couple dozen important, “key points” from what Andrew says here.

Important Note: This blog post contains the story of someone who was able to do extreme mold avoidance and then return to living in society in a normal house. However, the timelines and successes contained in this post are highly variable depending on individual factors. This post should in no way be seen as a guideline that applies to other people. It is simply one person’s story.

(Bryan’s questions and statements in bold)

Tell me about your life before you embarked upon extreme mold avoidance. How sick were you, which other treatments did you attempt?

I was very heavily exposed to mold but for a shorter amount of time than you Bryan – only three years. But my Great Plains urine analysis had higher levels of ochratoxin A than either of two big time mold doctors in Boulder had ever seen; as well as very very high levels of some others too.

Prior to trying extreme avoidance, I did “moderate” mold avoidance. I did binders and CSM (cholestyramine) heavily for a year and a half and avoided bad buildings (basically all buildings) for more than a year. I even slept in my car in Colorado down to 14 degrees in the winter. But none of this was enough. I was still getting sicker.

I was seriously ill for 3.5 years, and less seriously ill for many years prior to that.

Someone asked me all my symptoms the other day and I sent this list:

Constant severe brain fog, memory issues, word recall issues, cognitive issues, severe emotional disturbance, disassociation, feeling of pressure and pixelation throughout my entire body especially in my head, insomnia, constant fear, worry, anxiety, hopelessness, terrible muscle weakness especially in my legs and arms, terrible constant fatigue, sun sensitivity, heat sensitivity, inability to work or walk more than a few minutes without getting terribly exhausted, chronic lung pain, terrible chronic sore throat (taking 6 ibuprofen a day), itchy eyes, constant post nasal drip and sinusitis, terribly dysfunctional immune system – catching 30-50 colds a year (I now haven’t had a cold since February), developed allergies I never had before to down feathers and other things, became sensitive to coffee, tea and beer – made my symptoms worse, inability to recognize beauty in nature, personality changed a lot and became very muted, dysphoria and disassociation, extreme fatigue, bed bound and many other things.

Before doing extreme mold avoidance I did activated charcoal for a year, huge doses like 10 to 12 g a day. I started doing it on a whim when I was very sick, before I was sure I even had biotoxin or mold issues. But every time I took the charcoal it made a huge difference. Once I realized mold was a serious problem I did CSM (cholestyramine) for about a year and that helped a lot too. I also did coffee enemas for a long time and they gave me big gains. I also took intermittent camping trips, quit my moldy job and left my moldy apartment and I did not sleep in a bad building for more than a night, sometimes sleeping outdoors in Boulder in 14 degree weather. This was all two years prior to extreme avoidance. I healed a lot but was still very sick. 

Leaving Boulder and beginning extreme mold avoidance in a tent is when things really began to change and even then, I still was very sick up until about four months ago. Some of my initial NM locations were no good. 

So I wasn’t going into extreme avoidance at my absolutely sickest, I had already healed some. Plus I was lucky to have only been seriously sick for 3.5 yrs prior. I think both those factors contributed to my ability to do shorter term extreme avoidance.

Various quotes from Andrew during his 8 months of extreme mold avoidance on the road in a tent. Andrew traveled and camped in may locations and lived almost exclusively outdoors for those 8 months:

I can hardly handle my tent and many clothes.  My chemical sensitivity got worse, or maybe it just became noticeable as separate from mold (or everything, even new stuff, is contaminated with mold or MT – I don’t know). Basically, I am “reacting to everything.”

(Note from Bryan: this phase of healing is quite common and is referred to as intensification, where reactions to mold – and other environmental stressors – is “intense”).

My plan is to drive to northern NM once it warms a bit, maybe a month, hopefully the virus has settled a bit and buy a truck around taos or Santa Fe. Buy an aluminum topper, some kind of mattress and continue doing avoidance in tent plus the truck.

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I was very desperate when I set off on the road to do this. I believe in mold avoidance. If I disbelieved, do you think I would be living this way in the scorching sun, sick and alone, more than two months now?

Comments regarding re-entering Boulder hometown area after 8 months of extreme avoidance. Remember, prior to extreme avoidance he was not making adequate progress and was very sick, despite a lot of attempts at “moderate” mold avoidance as well as many treatments, supplements, binders, and cholestyramine. 

Andrew “re-entered” Boulder in phases…first, by camping in a pristine location in the mountains above Boulder, making trips into town. Then, by staying in a hotel in Boulder. And finally, by moving into the good-enough house where he now lives and is still able to make progress toward health.

Erik Johnson, the person who first pioneered mold avoidance, referred to this kind of measured, careful approach as “mold avoidance skills.”

Camping near Boulder in a very pristine spot but going into Boulder once a week has really opened my eyes to the reality that mold isn’t just inside, but it is outside too. In fact, the outdoor toxins seem to be as much, or more, of a problem than indoor mold. It’s amazing how becoming unmasked to MT (and whatever else might be in the air outside) makes most moldy buildings like a temporary respite from the outdoor toxins…so long as the buildings are clear, which is rare to find.

(Bryan’s comment: I think this particular toxin behavior is more characteristic of FRAT, rather than MT…that is, the respite one feels when being indoors).

My tolerance for all things appears to be increasing too. But that initial extreme avoidance seemed to be necessary. 

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I was scared to continue programming into my body the need for pristine so I started living in a good enough hotel for a month and a half and did not seriously avoid outdoor stuff. As long as I slept in a clear spot I could tell I was still healing and my tolerance was increasing. 

Going from pristine outdoor to bad outdoor was terrible, but moving indoors and healing as I slept and then spending time in Boulder during the day, I think my body has shifted into healing without requiring pristine, which was my goal. I’m now living in a house that’s definitely not perfect but seems good enough. I still think I’m healing.

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Yes I eat at restaurants and spend time in friends’ houses. I seem to be reacting less to mold, but I can feel the outdoor toxins more so than before I left. 

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I still feel it. It’s just not terribly bad.  Living outdoors in pristine and then going to bad locations was terrible. But living in a fairly clear indoor setting, in a not-great location seems to equalize the reactions and my body seems to be adjusting and learning that it can heal in a less-than-perfect setting. Which was my goal.

I am now living in a pretty good but not perfect house right in downtown Boulder. The outdoor air is not good but since I’m not practicing extreme avoidance in pristine air my body seems to be adjusting. I am not doing extreme avoidance anymore; I only try to avoid really really bad indoor mold

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So long as I sleep in a good enough indoor location and don’t meticulously avoid exposure, my body seems to be adjusting and learning that it can heal in a less-than-perfect setting.

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I’ve been back in Colorado since early June. but I was sleeping and spending most of my time in a very clear outdoor location – clearer even than anything I found in New Mexico – A very high altitude location outside Boulder. Then I transitioned to a good enough hotel built two or three years ago. Some of the rooms were bad but some were good enough to heal. The hotel was surrounded by bad outdoor air. I stayed there mid August til October 1, when I moved into a house in downtown Boulder. I don’t think I would have been able to find this house without the help of my doctor, who helped me screen housing options.

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I’m pleased myself. I never could have predicted this outcome. During my extreme avoidance it almost felt like a death sentence.  I had no idea how I would escape the situation. It was an act of desperation, to hit the road for 8 months.

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I went back on a whim – as a kind of test. I did the dental procedure while I was back but that wasn’t the main reason I went back.

Ever since I’ve been back I’m experimenting with balancing my health, and with the quality and type of life I desire, trying to balance the two instead of pursuing one solely and at the expense of the other.

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I’m still working with my doctor. I give him a lot of credit for helping me move back indoors in a way that allowed me to maintain my health and continue healing. First time

In four years I am no longer falling back into serious illness.

My doctor has decontamination protocols for cross contamination and low level molds which are annoying but won’t shut down detox.  When I first moved into this house I had some insomnia and other issues but he helped me completely decontaminate my room and it became a very livable space.  

Did you ever learn how to identify the outdoor supertoxins FRAT and MT?

I didn’t. I purposely chose not to focus on identifying toxins – just paying attention to when I felt good and when I felt bad. I was scared to program my system around extreme avoidance. I didn’t want to heal in a way that my body required pristine so I didn’t want to hold onto any particular model and was careful not to program avoidance too deeply into my mind and body

But you think the extreme avoidance you did was important to your present success? Even without learning toxin names, of course.

Absolutely. I had to give my body a chance to shift into a healing state by removing environmental stressors. This did not occur in Boulder when I was attempting “moderate avoidance.” 

Does it bother you to talk about your extreme mold avoidance experience? Are you trying to forget about this aspect? 

Doesn’t bother me at all to talk about. I still consider myself a mold avoider. It’s the most essential piece to stay well I think. Just doing it a bit less extreme. Testing my limits and balancing a certain amount of health with a more expanded life

A lot of people report that in successful recovery, they are much more aware of mold toxins even though the toxins aren’t harming them as much. do you feel like you are more aware of mold now than before your extreme avoidance?

Much much more aware of outdoor exposure – yes. I have been unmasked and very sensitive to indoor mold for a few years. I definitely feel less reactive though.

(Note from Bryan: Please see this podcast for a discussion of the difference between “sensitivity” and “reactivity.” In short, sensitivity is the degree to which one is aware of mold exposure, and reactivity is the degree to which mold harms a person). 

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I wasn’t aware of how much outdoor exposure was affecting me until I left for NM last February. I was maybe 20% unmasked to outdoor exposure before leaving. 

My short trip to NYC last October unmasked me a bit. And provided some awareness of the effect the outdoor air here was having on me

(Note from Bryan: To understand what “unmasking” is, listen to this podcast episode)

So are there parts of the city you just totally avoid?

No. I just take a shower everyday and certain supplements/protocols if I’m feeling particularly off. But I’m trying to live a normal life – within bounds. I wouldn’t sleep in a mold building for instance (not that I could anyway, it’s so uncomfortable and insomnia makes it impossible).  But I limit time outside and once I start to feel really bad I go home and decontaminate and maybe do a few other things

Everyday I get exposed to something but it doesn’t knock me off the power curve – I’m still healing and no longer get sicker. I have a week here and there where I’m doing worse and become slightly more reactive again but it evens out and then I return to a certain baseline – I think this has to do with detox. I’m still very much healing, not done, and have a long way to go.

I also react to my girlfriend and my brother and many of my friends – especially those living in really bad buildings.

But as long as I can go back to my safe space and shower, my reactions tend to even out pretty quickly.

I was also able to save and decontaminate my car and most of my clothes – except those that I wore when I was dumping in pristine locations. (Bryan’s note: this is fascinating to me).

Comments on limiting time outdoors:

I believe my clear enough house protects me from outdoor supertoxins (maybe MT and/or FRAT) and other outdoor exposure, so I can return to baseline by going indoors

I still spend a ton of time outdoors because I’m balancing health with quality of life. I don’t always feel great outside but I can do my favorite hikes and exercise and spend time with friends.

But yes, outdoors is not great, some days are worse than others. always seems worse in the sun and the heat. Colder days I feel better. But it’s always tolerable for a time.

My doctor has suggested that “good enough” housing shields from MT and other outdoor exposures. That has been my experience as well.  I don’t feel the outdoor stuff inside when the building is clear.

I think I am able to heal in less than ideal outdoor locations because I have clear enough indoors so I can detox while I sleep and I always can return home, shower, put on fresh clothes and return to baseline.

I do think it was important to leave Boulder for awhile – remove environmental stress so my body could begin to shift into a healing state.

Comment on keeping a clean sleeping space:

I keep my bedroom completely clear and decontaminate it every week. The only thing I have in my bedroom is a Walmart cot and a sleeping bag. I put on fresh clothes and take a shower before going in my bedroom every night and I don’t hang out in there at all if I am not sleeping.

That’s a lot of discipline to keep up that routine. You must really be feeling the benefits of it to keep doing it.

Oh yes absolutely. I think if I’m not careful I will backslide. The bad stuff is all around me so I have to stay clean and clear

It is widely believed that mold reactivity may be caused by infectious components. Tell me about your experience with Lyme disease, viral infections and your trip out of the country which kicked off your reactivity.

This all really started for me after I went to Columbia in South America. As soon as I came home I started developing environmental intolerances.

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My girlfriend and I also caught some weird viral thing or something on Colombia that showed up primarily in our throats and as lethargy, and it never really went away. I definitely had a huge viral component to my illness .

Oh I also forgot that I treated re-activated chronic Epstein-Barr with this Chinese herbalist, homeopath, acupuncturist who used Vega testing to find Epstein barre (which correlated blood tests showing elevated antibodies). 

I think that was a really important healing step as well

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Oh yea – I had acute lymes disease twice in 2012. I grew up on the east coast.  Had bulls eye rash and got incredibly sick. Took antibiotics both times and killed it I think.  Western blot test showed negative a few years ago. IGeneX test is inconclusive. I’m not sure I ever had lyme beyond the acute infection. But find it interesting I later became mold sensitive.

General Comments:

Yeah, there were clothes that I wore in my pristine spots in Colorado and New Mexico, but I wasn’t able to wear more than one or two nights and heavy TSP couldn’t fix. Something about me doing deep detox in those clothes seemed to ruin them completely.

I was able to remediate old clothes, and current clothes with heavy TSP though.

I never felt great during extreme avoidance – not at the end, middle or beginning. Chemical sensitivity to tents never went away and I imagine would still be there.

I never woke up feeling 100% clear even though I was definitely in some very pristine locations.  I was still reacting to gear and maybe myself.

I started extreme avoidance last February and stopped camping in a pristine location in August, then transitioned to good enough but not 100% perfect hotel for 1.5 months, then a good enough but not 100% perfect home – older home even and standard construction, but somehow it never grew the really bad stuff. And the annoying stuff I was mostly able to eliminate with my doctor’s decontamination procedures. I still don’t wake up feeling perfect. Some annoying reactions, but actually less than when I was pristine camping. I think this “wake up slightly clearer” is because I’m further along in the healing process.

So anyway I would say “feeling insanely good” during extreme avoidance at least for me, was not predictive of doing well in civilization – I never even came close to feeling insanely good, yet I seem to be doing OK back in Boulder.

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It was a slow transition from camping to hotel to house so that helped. At the hotel I often was moving rooms, some were good some were  bad. Sleeping in this house initially was pretty uncomfortable. I had some insomnia and racing heart and brain fog and pressure sensations in my head. But I really was able to decontaminate the surface level stuff since there was no bad mold growing on the walls or anything. 

And honestly I’m not sure I would’ve been able to do this without my doctor’s help. I had tried unsuccessfully to move indoors for years but my reactivity was way too high and it was shooting in the dark for housing. I was so desperate and I kept signing leases on bad places. I often don’t feel the building immediately. I usually have to hang out for 30 minutes or an hour, and even then to be certain I like to spend the night.

I also think my extreme mode avoidance in combination with some of my doctor’s routines has dramatically reduced my reactivity. So I give so much credit to him. He really has been a saving grace.

You’ve told me before about how you wanted to keep your mind healthy in how you think about mold avoidance. Can you talk more about that?

I Just try to focus on health and listening to my body. I try not to take on new belief systems about what’s happening or how fucked I am and I try not to predict the future. All that stuff is hard cause it runs contrary to the fear programming of my mind. 

I didn’t try to name or learn toxins. my body was screaming at me and I was scared to tie a bunch of language and belief and fear to my experience that would further bind me to the necessity of extreme avoidance. I felt like tying my mind to these reactions would make

it harder to eventually disentangle. I didn’t want my health to be perpetually tied to extreme avoidance

Comments on Camping Gear

This is my third tent. First one from, Boulder I switched at REI for a north face tent, was intolerable. Ordered a mountain hardware mineral king 2 tent, all their tents are no FR (fire retardant). Great tent, really cool design, very roomy for two person and almost all mesh which is awesome. Favorite tent I’ve bought. It’s more tolerable than the north face tent but still problematic. As are the closed cell foam silver thermarest sleep mats recommended by Corinne