The camping cure

Living outside changes you. When environmental illness left me too sick to stay in my high-rise, I turned to nature to heal

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Photo by RMB Images/Getty

Photo by RMB Images/Getty

Jill Neimark is an award-winning science journalist and author, and a contributing editor and feature writer at Discover Magazine.

In 1996, I stepped into a New York writer’s dream: a rent-stabilised two-bedroom in a pre-war doorman building overlooking the Hudson River. Built in 1931, the great behemoth of a building contained nearly 300 apartments and a respectable smattering of famous musicians and artists. To the north, a curving boulevard dotted with gorgeous 19th-century row houses. To the west, a ribbon of green that ran many miles along the river. And the Upper West Side itself was foodie heaven. I thought, as any New Yorker dumbstruck by her luck would have: ‘I will live here forever. Yup, they will have to carry me out feet first on a stretcher before I ever leave.’

By late 2009, that moment had arrived. First, in the summer of 2000, came a tick bite that seemed to slash and burn me to the ground. I never recovered, in spite of antibiotic treatment. Then in 2005, a developer bought my building and for two years his team demolished and renovated 150 apartments, selling them as luxury condominiums. Swarms of demolition workers brought brick dust, mice pouring forth out of the walls, bursting pipes and multi-floor floods. My ceiling fell in from a torrent of water, my bedroom wall slid off like putty, my oak floors warped from erupting wastewater.

By the time the renovation was complete, my sanctuary was infested with mold and probably strange bacteria; back in the 1930s, they insulated between floors with rock wool, which holds an astounding amount of moisture and can grow mold and bacteria after flooding. I was bedridden, too ill to ride the elevator down one floor and walk across the lobby to get my mail. Afflicted by environmental illness, I became insanely reactive to everything – most clothing, my gas stove, a new mattress, the faint odour of fragrances on my partner, Paul, when he came in from work. And the noise, oh the noise. Every winter night, the rejiggered steam heat pipes shot out cannonballs and pistol fire. And the schoolyard under my window, once nearly deserted, was now packed all day long with screaming kids.

I had to leave, but it was like leaving my self. I ripped free of my emerald Oz only when I felt like I was going to die. We departed on Christmas Day 2009, and drove south to one of the loveliest sanctuaries in Georgia – Serenbe, a 900-acre new urbanism community crafted by Steve Nygren, a restaurateur, and his wife, Marie Nygren, a chef. I sank into the king-size bed at their inn, and knew I was never going back.

It would have been nice if I could have lived forever in Serenbe’s bed and breakfast, but that wasn’t possible, due to cost and the fact that the entire inn often rented out to wedding parties. So we travelled around the South, driving hundreds of miles here and there to check out supposedly non-toxic rentals, none of which were liveable. All the homes made me sick, and I broke three expensive leases. I was ‘tilted’, to use the acronym coined by Claudia Miller, a physician and environmental health specialist at the University of Texas. TILT stands for toxicant-induced loss of tolerance – a condition in which the immune system sustains too extreme or prolonged an exposure to toxins – man-made or natural. The individual, rather than recovering, suffers a strange breakdown, and becomes exquisitely sensitive to low doses of chemicals. I wrote about Miller’s work on environmental illness at length in Discover magazine last October.

We came to the proverbial end of the road in Loxahatchee, Florida – horse country – in January 2011. The owner of a bed and breakfast favoured by equestrians had sworn her place was mold-free. She’d even had a mold dog sniff it out, and proudly waved the certificate at us. But I could smell mold everywhere, and a few days later, we fled. Now what? We were homeless, it was winter, and Paul said: ‘Why don’t we camp for a few weeks?’

What the heck. We already had two backpacking tents, having tried it for a few nights in the Georgia mountains. We could view it as a vacation while we figured out our next move. So we drove to the nearest RV park and set up our tents alongside the fancy rigs.

And there, in that park, lying on a thermarest mat in a tent pitched on grass, my life took an unexpected turn. Because, quite simply, I felt better.

In one sense, I was about to discover an utterly simple answer (fresh air) to an unutterably complex condition (environmental illness). I had suddenly lightened my toxic load. As Bill Sothern, an indoor air quality expert and the founder of the Microecologies firm, told The New York Times last May: ‘The air indoors is 10 times more contaminated than the air outdoors at any given time.’ I didn’t have to test for, or calibrate, or catalogue, the innumerable potential contaminants, since they varied from place to place – fresh paint, synthetic carpet, formaldehyde, mold overgrowth, flame retardants, fabric softener, pesticides, second-hand smoke. I needed only to leave it all behind: to live, temporarily, outside.

But living outside changes you. You slowly unspool from civilisation, and the more you embed yourself in nature, the deeper the alchemy. Most of us sense this; it might be why camping, hiking and wilderness adventures seem to be an ever-greater obsession.

A few weeks later, we drove into 200,000 acres of national forest in North Florida. The drive from the forest edge to the campground itself takes about half an hour, through the choiring strings of gaunt loblolly pines rising like endless throngs of organ pipes reaching for the light. The hidden campground, on a spring-fed lake, is a moist and lush wonderland festooned with live oaks, pines and Spanish mosses. One lone cypress grows on a spit of land in the lake. Everybody loves it for its anomalous, gnarled, stubborn insistence on living where it unfortunately landed.

We chose the loop with water and electric. There, fitful insomnia gave way to deep sleep. (Yes, research from the University of Colorado confirms this effect; camping for one week, away from electric light, resets even the most stalwart night owl’s circadian rhythms.) My constant, aching muscle tension eased because, I guessed, I was nearly off grid, far from electrosmog. I ate fish an hour after it was caught from that pristine lake, and discovered that my body liked pure food. In short, the frisson of reactivity I had lived with for years was gone. I gazed up at a cerulean sky – a blue so blue it seemed an invisible hand had peeled wax paper off the stratosphere. I taunted the crazed mosquitoes banging against the mesh of my tent. I got stronger. We took long constitutionals, my old-fashioned choice of word for walks. A sunny day was laundry day: I heated water in a Le Creuset pot and washed my clothes by hand, hanging them to dry on a nylon line strung between trees. I loved to bury my face in their fresh scent.

Most striking, however, was my shift in mood. Rumination and anxiety seemed to melt away. And it was not simply the cliché of being in nature, for all nature was not equal. Over the next few years of frequent camping, I found I could always correlate clean air with clarity of mind and mood, as if my body was a pollution-sensing device calibrated to detect tiny shifts.

I learned to walk around a campsite and simply stand in the middle, feeling my body’s response, before I chose the place to pitch my tent

I discovered invisible ecosystems all around me, pockets of goodness and pockets of badness, carried on prevailing winds, borne on clean or polluted lakes and rivers, emanating out of untouched or developed land, shifting with the seasons. At every campground, high on a hill always felt cleaner. The sunnier sites grew no mold. The lakes where you were allowed to fish as much as you wanted felt good. The lakes in which agricultural run-off led to algae blooms made my body ache and pummelled my mood. I learned to walk around a campsite and simply stand in the middle, feeling my body’s response, before I chose the place to pitch my tent.

I met a retired lawyer who had Parkinson’s disease, a dog, and four cats. She was tent camping in national forests full-time, and boasted that her neurologist said she was doing better than his other patients. I met a family who, after financial and medical reversals, hiked the entire Appalachian trail to recover their sense of purpose and their centre of gravity. I met Roger and Alida. They drank too much, and grilled me fresh venison over their campfire. I coveted Alida’s firestarters – strips of primordial, sap-crusted pine that she and Roger had harvested from their timber. It burned sweet and pungent. One morning she traipsed over to my site and gave me two. I thought they were way too pretty to use, but not long after I gifted them to a young man who was hiking through the forest alone with nothing but a backpack. He borrowed our fire pit and firestarters to make himself a meal.

I continued writing, and Paul continued proofreading, using our aircard wireless adapters to create a hotspot wherever we chose. Dorothy, I thought to myself, we’re not in Kansas any longer. But where exactly are we?

And this is where my story veers from a tale of sickness and health, and rolls away in a different direction. Because the camping lifestyle took me back in time, to archetypes – building a fire, washing a shirt, tarping a tent for rain, resting in heat, rising in the cool dewy morning, foraging for food, sensing a storm not far off on the changing wind, feeling the earth heat up every summer day like a pot on a slow fire, noticing the inevitable exhalation around eight or nine at night when a cool breeze comes out of nowhere and the body sighs with relief. Old sayings suddenly had meaning. The harvest moon at the autumn equinox is bold and big and brilliant – and so named because in the days before electric lights, farmers could harvest their last crops all night long. ‘Red sky at night, sailor’s delight. Red sky at morning, sailors take warning.’ Yes, the timing of that red sky tells you whether dry or wet air is headed your way.

As the naturalist John Muir once said, ‘When we try to pick out anything by itself, we find it hitched to everything else in the universe.’ But not to the world found in cities or suburbs. The natural world is entirely unhooked from homes and hallways and steps and doors and chairs measuring just the right size for humans. That world is rarely 72 degrees and 30 percent humidity, and is certainly not climate controlled year-round. It is not a world in which weather is watched through a window, where if the power grid fails, it’s for a mere hour or a day, and where you rightfully wander from a room for cooking, to a room for watching television, to a room for dining, to a room for sleeping, to a room for washing… with light and dark obeying your whim and desire. No, it is an unpredictable world that demands participation.

We miss the creatures of the wild, so we tame a few – mostly cats and dogs – the great memes of YouTube and Buzzfeed, our perpetual children and compliant alter egos. But wild things intrude suddenly, and endear in odd ways. The nearly blind armadillo snuffling alongside the bushes hunting for bugs. The daddy-long-legs, a species 400 million years old, always clustering together, their spindly legs overlapping each other, on the mesh of my tent under my rainfly. Those spiders were so still and calm, such great meditators, they seemed like my special guardians. They were also amoral cannibals, and I watched one devour a carpenter ant in rapacious, sucking bites. The tree frog that lived under my tarp to escape summer heat. The cricket so mesmerised by my white noise machine that it crawled beneath and sang to it all night. The squirrel that daily tossed acorn shells into my tent from his tree branch and bounced them off my truck, chattering with mischief and joy. And the ants – all of the Southeast is a moving anthill in summer, upon which humans pour Comet, vinegar, talc, Raid, deadly poisons and inspired curses.

Then there was the imaginary fox that turned out to be a stray dog I nicknamed Ralphie, who stole our shoes at night, dragging them to the woods and dropping them there in a secret pile, half chewed. I accused Paul of playing tricks on me and demanded he return my sandals; he accused me of stealing his slippers and said it wasn’t funny. We found our shoes and began to feed Ralphie, but then he stole my shirts off the line and chewed the sleeves. It was his untamed way of leaving his mark and scent on our things, of trying to be part of our lives.

And, most memorably, the enormous, mutant scorpion that kept trying to climb into my tent and hide in there with me after a flash flood – terrifying me utterly – until he turned out to be a crayfish. What did I know of the distinctly different morphology of scorpion and crayfish tails?

In the city, I lived among my own kind: artists, writers, musicians, scientists, all of us seeking to understand the cosmos in deep and novel ways. The rest were strangers, and I ignored them, even the ones talking to the air or begging for money. When camping, I lived among strangers, and I had to face them. Often I learned new ways of being. A hunter showed me how he hauled a chair up into a tree and sat in it, ‘riding the wind’. A kayaker showed me his sleek $2,000 boat, made of high-tech gel and with the long lines of a Modigliani. It weighed only 20 pounds.

They seemed to come not to enjoy nature, but to raise an angry middle finger to the sky

Other times, I was smack up against folks I couldn’t escape from. Paul and I had a running and somewhat dyspeptic joke about the bubbas with dented, mouldy trailers: they built choking campfires with gasoline and wet or green firewood, even on a summer’s day; blasted music; watched loud football games on flat-screen televisions at their picnic table; drank beer. They seemed to come not to enjoy nature, but to raise an angry middle finger to the sky. They could ruin a weekend, but they mercifully left on Sunday to go back to work.

Camping has not cured me, but it has helped to heal me. I’m still sick – vulnerable genetics, a few tick bites, and some bad environmental luck has made me forever fragile. I still live with a complex, chronic, multisystemic illness – and if you granted me two wishes, it would be to have never walked in a tick-infested Connecticut garden in the summer of 2000, and for my building to have been overlooked during the Bloomberg expansion in New York City, so that it was never half-demolished and turned into a water damaged, sick building in the process. If I want a permanent and truly non-toxic home, I will have to endure the hassle of building my own concrete, tile and glass house, a decision I am edging closer to, with some trepidation.

Yet I’m back in the game of life. Much of the world and its chemicals sit well with me now. I wear whatever I want, cook over gas and propane stoves, and don’t notice residues of fabric softener on Paul’s clothes. I’ve camped winter and summer, and enjoyed them both. Where once I could barely walk to my bathroom, I now walk miles on nature trails and country roads. I become cold-adapted in winter, cooking in a hoodie and sandals, in temperatures that might have formerly made me shiver – and research backs me up there, too (cold thermogenesis, as it’s called, burns brown fat and raises antioxidant levels. It’s the reason Finns like to jump in the snow after a sauna).

This summer I spent time at an RV park in the northeast corner of Georgia, where I saw the glitter and dust of the Milky Way from horizon to horizon. And all the clichés held true: I was awestruck by my beautiful universe, and grateful to see it before me. The physicist John Wheeler once drew a large U and suggested that this might be the meaning of the universe itself. At one end of the U was the birth of our universe in the Big Bang, and billions of years of evolution later, at the other end of the U, was the human ‘eye’ or ‘I’. I looked back in time, gazing upon that birth. The universe seeking to know itself. The deepest dance there is. I had made it out of the devastation, so sick, and here ‘I’ was, contemplating my solar system, and now here ‘you’ are, reading my words.

‘The morning wind forever blows, the poem of creation is uninterrupted; but few are the ears that hear it.’ So wrote Henry David Thoreau in Walden (1854). My story is not so much about being sick and getting better, as it is about two ways of living, polar opposites, both uncompromising, deep, and enlivening: the life of the intellectual in the great city, and the simple, albeit often challenging, life of someone living close to the land. I recommend a good medicinal dose of both to everybody.

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Comments

  • http://www.suethomas.net/ Sue Thomas

    Jill, thanks very much. I really enjoyed this. I'm curious about the kind of balance you've now achieved. By the end of your piece it sounds as if you've found a way to live in conventional accommodation for at least part of the year as long as you intersperse / balance it with living outdoors for periods of time. Is that what's happening or have I misunderstood? And are you now able to visit the city, or stay in hotels for example? I don't have this condition myself, by the way, but am very sympathetic to what you've been through.

  • Greg Petliski

    Man wait till she sees the West.

  • Calamityted

    Consider adding Chaga Tea to your diet, or Multi Flora Polypore.

  • http://www.kristinohlson.com/ Kristin Ohlson

    Wonderful piece. Thanks!

  • Andrew Whipple

    Jill,

    Beautiful! Thank you so eloquently capturing "the camping cure."

  • Susan Linke

    Great piece! It's amazing how many additives are in our food supply. So many of us eat "on the go" at places like Chick-Fil-A for example. Their grilled piece of chicken has 20 ingredients, and the whole sandwich has about 50! I'm not picking on Chick-Fil-A, it's just one example out of thousands. Our bodies do much better with real food as you said. Another trigger for many people is vitamin D deficiency. We either aren't outdoors or slather on the sunscreen. Vitamin D is an important immune system regulator. Deficiencies are associated with chronic pain, autoimmune conditions, hypertension, depression, increased colds & flu, and so much more. We can't get it from our diet in sufficient amounts, and taking a supplement is no guarantee of absorption. It's necessary to get a blood test to check levels. I am a dietitian and for those that can't adopt the wonderful lifestyle you've been able to enjoy, we do have a great food sensitivity test that allows people to find out what their triggers are, or even more importantly, find out what their safe foods are. Once we know what is safe to eat, we can get symptoms improved within a couple of weeks typically. Thanks so much for taking the time to write the piece. As a minimum, it should encourage us all to simplify our lives and get out to nature more often.

  • TaosRandy

    Jill wrote another way excellent article!

    I very much relate to Jill and her healing journey. Daily access to fresh air is arguably one of the most important treatments for folks with Environmental Illness. Like Jill, I grew up and lived in NYC. For health reasons, I now live on the outskirts of Taos in a home made from natural materials. I am grateful to have access to plenty of fresh air, almost all the time. I would never have expected at any time in this lifetime that I would feel like a pioneer woman, but I do: I thrive on raw dairy and other whole, organic and unprocessed foods. We live off grid and are very much in touch with the changing seasons and weather. The rain fills our cisterns and the sun charges our solar batteries. We don’t have dogs or cats, but we have plenty of wild 4-leggeds drop by. Also we have plenty of winged visitors, like ravens, crows, hawks, finches and mountain bluebirds.

    Our current favorite 4-legged visitor is a lone coyote. When I toss food outside I sing a little yoo-hoo. Our coyote friend responds to my yoo-hoos and comes right by the house to eat our scraps and old food. He is our 4-legged composter.

  • John in New Mexico

    Jill's writing style makes me almost experience the events and her feelings. Aeon should treasure this insightful writer.

  • Scott Killingsworth

    This is absolutely beautiful--I really enjoyed reading it. I'm so impressed and glad that you have developed such a great perspective on your journey. I must admit that this is a daily challenge for me.

  • Jayne E Eldred

    A really beautiful piece, written captivatingly and so inspiring. :)

  • jill neimark

    Hi, just checking in now and want to thank you all for the lovely comments so far. I don't know how I'd feel if (when?) I went back to NYC, but I'm fine in Atlanta...and yes, stay in hotels--but not all are okay. Recently renovated, or ones with too much water damage, are problematic. Randy, your lifestyle sounds absolutely ideal. Scott, I do know it's a challenge...especially in more remote areas...Susan Linke, I am trying to adopt a more paleo diet, and source as much pastured meat, eggs, and organic local veggies as possible. In fact, the hunter in the piece who "rides the wind" procured 30 pounds of wild venison for me. Wild game, truly wild, is so much tastier than any pastured meat. So yes, "nature" includes food that is out in nature. I'd love to learn to forage at some point. Thank you all again.

    • http://www.suethomas.net/ Sue Thomas

      Thanks for your reply, Jill. Good luck for the future.

  • celticdoc

    That was such an eloquent and beautifully written piece! Very poetic. It was also one of the most compelling arguments for camping as the best treatment for environmental illness. I've read a lot of articles and listened to youtube videos but this was so excellent that it has convinced me to try camping for my own EI. Thank you Jill and thank you aeon!

  • Lisa

    This is a wonderful article, Jill. Thank you very much for sharing your experiences in such a thoughtful and evocative way.

  • Lisa Petrison

    This is a wonderful article, Jill. Thank you very much for sharing your experiences in such a thoughtful and evocative way.

  • kchristine

    A beautiful piece Jill and I am glad that you found nature to be your glorious respite from the world, as I have also known it to be, and there is absolutely nothing like becoming 'one' with nature in its full splendor! My only comment is that as I have gotten older, I find the adaptations to changing temps to be the greatest challenge for me! I would be curious to know how does one stay warm in a tent in winter and how did you avoid coming in contact with ticks, commonplace while camping? I see that you were for the most part south and that may have made the difference, as winter camping in the central and northern states are something that I would not attempt!

    • jill neimark

      HI KChristine, I didn't entirely avoid ticks--we got bit this summer, during unusual weather (it rained about double or triple the normal amounts, which kept the temperatures much cooler than normal, and allowed ticks to come out of the woods. Normally it's so hot and relatively dry in the summer, they would dessicate and die if they left their moist wooded leaf cover). Generally, I chose sunny spots not fronting woods. However, this summer we (or I) made a mistake. Lone star ticks are common down here, and they are very aggressive. They will travel quite a ways if they sense a host in the vicinity. They don't just quest on a blade of grass passively. Paul got 3 or 4 bites, and I got one (that I know of. You never know with ticks, if you see one, did you miss one). I got it off pretty quickly, though (found it in the shower in the morning, and it had not been there the night before). I had a pack of tick twisters. I'd never removed a tick before, since I never saw the first bite, and only discovered the huge bullseye on the back of my knee 2 weeks later. But the tick twister worked fabulously and off came the little rascal. Dropped him in a baggie. Sent him and an adult lonestar Paul got, off to Univ N Florida as they have a tick testing program, but never heard back, in spite of emails and calls, so that's unfortunate. I also began tick checks twice daily. Though some diseases can be transmitted quickly (babesia, or viruses), erlichia takes minimum of 12 hours, and borrelia is usually 24-48 hours minimum. Also, down here, imho, rickettsia are likely more common than nasty strains of borrelia like the devastating strains in the northeast. So as scary as it may be, twice daily thorough tick checks just like brushing your teeth, quick removal, and testing the tick should be pretty effective. Had I been that knowledgeable in 2000, I'd be fine today. In addition, I now never break my rule of choosing sites that are out in the open, away from the woods...as to cold weather. The polar vortex has ruined our winter camping plans...and we don't feel like going down to South Florida...but if you get a really well rated sleeping bag, and a small space heater, and a good 4 season tent, you can stay warm down to 25 or 30 at night. Very comfortable. High winds are not so much fun, though.

      • Logan McCulloch

        Borrelia can be transmitted in far less than 24 hours. The bacteria has been shown to reside in the mouthparts of ticks, not just in their guts. Also, research from the Univ. of N. FL is demonstrating that the Lone Star tick can carry the borrelia bacteria that causes Lyme disease. Great piece Jill. I struggled with Lyme, Bartonella and Mold illness for almost two years and just completed five months on the AT in mid dec..

        • jill neimark

          As I say, I sent my ticks to Kerry Clark, and didn't get acknowledgement, or return of calls or emails; in addition, his publication was not in a peer review journal. So I find his resesarch interesting but far from definitive. Yes on rare occasion borrelia can be in the mouthparts, probably from partial feeding earlier, but mostly, it is in the tick gut, and the feeding signals changes so it can ready itself for human blood and migrate to the salivary glands. The tick feeds very slowly the first 24 hours while developing a sac in its gut to hold the blood. So usually borrelia is not transmitted quickly. In any case, if you save your tick and send it to a reputable lab (one that will actually acknowledge the tick and test it!!) you will know what's in it. I don't know what AT is. Good luck hope you are feeling better.

          • jill neimark

            PS borrelia survives in the tickgut on tick antifreeze, which is based on glycogen, just fyi. It is very "dormant" in the gut, ie low metabolism, since it's not an ideal "diet"

          • Pamela Weintraub

            Clark's evidence and that of researchers from U of Texas should not be dismissed out of hand --his research is careful, and supported (though not yet reproduced) by other very credible researchers. The preeminent entomologist Jim Oliver, the top expert on ticks in the South, thinks the lone star transmits a form of Borrelia. This is an active controversy. But what is NOT CONTROVERSIAL is that the lone start carries a number of other potentially devastating infections --so be careful out there, as you camp.

          • jill neimark

            Agreed, I said it was interesting but far from definitive. My experience down here, which I know is controversial and that GALDA disagrees, is that lyme is fairly uncommon (compared to the northeast, where almost everybody who lives or vacations in those parts, has gotten tickbites, bullseyes, lyme, and so have their pets. Most did fairly well with antibiotic treatment, but there seem to be some strains up there that are totally devastating). There may be other borrelia, in fact it seems likely (why should there only be one species in America?) but I feel they are milder. I also feel the rickettsia are more common. I've met two people, randomly, who had rocky mountain spotted fever. One in Ellijay (foothills of the mountains) and another while hunting in Elberton (outside Athens). Both recovered quickly with doxycycline, but both got temporarily very ill. They've also done seroprevalence studies in kids in North Carolina, and found asymptomatic RMSF. So I figure the rickettsia are more common down here. Either way--there are good preventive measures one can take--and continue to enjoy nature.

          • Logan McCulloch

            AT is the Appalachian Trail. To my knowledge there are no definitive studies that confirm the bacteria can only reside in the tick's gut, and the 24-48 hour transmission guideline (quite a wide range of time) is merely an assumption based on the feeding process of the tick (as you accurately describe). As most who become infected never recall a tick bite, and those that do can only estimate how long the tick was attached, this guideline is virtually useless at best, and dangerous at worst. Here is a link to a video I recorded on this topic. Sorry Dr. Clark did not reply to you...I understand he is a one-man show conducting his research on a shoe-string budget. All too common for those trying to find answers to Lyme, the fastest spreading infectious disease in the US. Here's to your continued recovery as well Jill...thank you! http://www.youtube.com/watch?v=FkFjrmfoG0A

          • jill neimark

            Well, don't want to argue with you. Have read up on it quite a bit, and generally, it takes 24-48 hours to transmit for all the reasons I stated (the tick doesn't even consume much blood, nor regurgitate into the host, until it has developed the sac into which the blood can pour. The bit of blood it is sucking up, signals to the spirochetes to start changing, and to ready themselves to travel into the salivary glands--and not many make it. Though nothing is "definitive", in that anything can happen in nature, I think an immediate reaction is either 1) a tick who had a partial feeding elsewhere and 2) your own borrelia, a prior infection, immediately coming out into your bloodstream when the tick starts feeding. Don't forget, a prior infection of borrelia--those bugs want to get into the tick gut and be further transmitted. They don't want to die when you die. You are not their ultimate goal. Anyway...I wouldn't mind about Dr. Clark if he would state very clearly that you should not send your ticks to him if you're concerned about infection, that they should be sent to a regular lab, because he's so busy, he might not even be able to get around to testing them. He does state it can take some time, but the way the website reads, one feels one is going to help further research by sending GA and FL ticks that were embedded...so I will never know for sure if my little nymph tick carried anything. Of course, it most likely had a rickettsia, and not all those are catalogued...hey that's fantastic you did 5 months on the AT! It starts at Amicalola Falls State park here in GA (a beautiful park)

          • Nick

            Sorry to butt in -- I see that you have a good understanding of Lyme basics. I just wanted to say that you're incorrect that humans transmit Borrelia to ticks -- neither humans, deer, nor dogs are competent vectors. The true cycle is between ticks and certain small rodents and songbirds. We're a dead end.

          • jill neimark

            Thanks, Nick, that's really interesting. Do you have any citations for me? I'd appreciate it as I'm always thinking about borrelia and also about ticks, the swiss army knives of vectors...but it seems to me there have been studies done on volunteers with clean ticks, allowed them to attach, these were folk who supposedly recovered from borrelia...I'd have to go back through my files to find it...and the brave scientist doing it, I think they were trying to find out if they were still infected tho asymptomatic.....

          • Nick

            It's not only that the tick feeds slowly, but that Borrelia itself is quiescent -- the action of the tick's feeding activates certain genes that cause it to be transmitted. It is VERY unlikely for Lyme to be transmitted within 24 hours. Also, the Lone Star tick is not known to transmit a dangerous disease, if you didn't hear back from them it is probably because they don't test this species for infection.

            And I'm sure you know this, but chronic Lyme has not been demonstrated to exist. Researchers are unsure if it represents something new, or is just a random subset of people who have other chronic diseases -- but the conviction that one is infested with an incurable disease is itself a burden, and many of the people who feed the chronic Lyme industry profit off of them.

          • jill neimark

            Well, thank you for the information. No, Kerry Clark is testing lonestars. As to chronic lyme, it does exist. I have it. Maybe if I'd been able to some aggressive IV treatment, I'd be over it--but I can't tolerate that. As to why it exists, even Steere himself talks about OspA and antibiotic resistant lyme. I'd like to see OspA studied, that may be one mechanism for some of us with a very inflammatory response to OspA, which also resembles peptide sequences on some of our cells--which then would confuse the immune system, so that low level persistence of borrelia would continue to create a very pronounced immune response--as well as our own cells--etc. Steere recently gave an interview and discussed a patient with antibiotic resistant arthritis who got a treatment that cleaned out antibodies. Peer review studies show that IVIG for 6 months significantly helps both vaccine (lymerix) induced neuropathies, and lyme induced, ie chronic lyme. All infections, acute and chronic, are due to host/pathogen interactions, and soem of those are genetically and epigenetically mediated. For the 10-20% of us who can't shake this infection, more study needs to be done. I know many people who've gotten lyme and a few weeks of antibiotics cured it--others pretty disabled for months, years or life (we are the minority). As you know, many infections range from asymptomatic to deadly--from HIV all the way down to most tickborne infections. Erlichia, for instance, is often asymptomatic, even rocky mountain spotted fever can be--but sometimes it's severe or fatal. Thanks for your input, Nick. And I just want to reiterate--yes, the world can be a dangerous place, it seems, but education and prevention are key, wherever you are. Had I been educated in 2000--I would have known what to do the day of the tickbite I never saw.

  • B A

    Lovely article - thank you for sharing your journey. I am recovering from a similar experience that also led to me leaving the heart of a large city and breaking several leases. Luckily I was able to crash and stabilize at my parents' home and find a work suited to me. I have recovered enough to function fairly well, although not without a great degree of fatigue most days.

    Sometimes I mourn the past but I feel that I have found more peace in life than I would have had I not gone through this ordeal. I have just started to do a little traveling again and have great hopes for the future.

  • Vanessa Christian

    As some of you know, in 2006, our home became infested with mold after our washing machine overflowed, and the remediation company did not dry it properly. After months of bizarre medical issues, our animals dying one by one, and overnight becoming super sensitive to smells and inhaled substances, we came to know MOLD in water damaged buildings, can change your life for the worst! We became homeless as this woman Jill in this story did. We too were diagnosed with TILT. This is our story to the tee, and many of us have the same story. It is a sad story, but it does get better. Every sentence of Jills writings, we went through. I thank God for the internet. Where doctors had no idea how to help us, finding others that had survived the exact same issues, could. I am happy to say we are back in our newly renovated, non toxic, green built home again. We have regained much of our health back for the most part, and if we slip back into not feeling so grand, we know how to get ourselves back out, and we now help others get well. My family and I, had to start over from scratch. We threw away everything we once knew to be our belongings, which were then deemed toxic materials. We tore our home down to the studs. We had to stay far away from the construction due to having become desensitized no different than someone with peanut allergies - while some can eat peanut butter, others go anaphylatic. We had to stay clear until it was finished. Not only finished, but outgassed. As crazy as it sounded, living in nature for a while was the only way we could heal our overloaded systems. It was crazy to live through! Dropping the clothes off your back, showering outdoors and crawling into a tent. Having to gut the interior of your vehicles that were cross contaminated by the milliparts from your clothing and hair. We had to leave the city limits. Why could we not tolerate indoor environments? The doctors we consulted with did not know. We were living outside. It was a crazy ride. We learned much. We wore masks with charcoal in them indoors. We looked odd. In time, we didn't care. We couldn't care. We were failing and we had to get well . College graduates, athletic, normal, church- going, fun- loving family -within days of exposure to mold and bacteria in our home during a remediation - our healthy and wellness changed overnight. If any of you have bizarre medical issues, test yourself for both Lyme Disease, and more importantly, mold test your home - something invisible- very well may be making you sick. My GP that could not help us, now refers his patients to me. I test air and have an account at the same lab our hygenist, we paid $30,000 to, used. I respect mold and its power. I help others get well. It is the least I can do for those that saved my life - all found, not in a doctors office, but found on the internet. Thank all of you that have gone through this - for sharing how you got well. Thank you to the doctors that were taught "by us" and believed we weren't crazy. Thank you to the doctors that would write the prescriptions that helped us get well. For the sauna manufacturers, the IV vitamins, the clean water, the fresh air. It was a list of many things that worked together as a whole to help us get well. If you are suffering from environmental illness and are losing hope, contact me at bless1another@cox.net. I can help you. Thank you, and Be Safe! Vanessa Christian

  • Joanne Drayson

    Thanks Jill a really interesting article telling us what we know deep down but often ignore, even more so when we are sick with a chronic illness.

    Fresh air (and nature) who'd have thought it could help so much but yet we know it does and have probably always known.

    I was amused when a friend tore this article out for me to read - this link is only a short version but it is worth a read Fresh air natures antibiotics, killed E Coli in two hours http://www.newscientist.com/article/mg22029470.700-fresh-air-and-sunshine-the-forgotten-antibiotics.html

  • Diggitt

    Well, she washed her underwear in a Le Creuset pot. No old Revereware pot from Goodwill for her! You can take the girl out of the upper west side out apparently the upper west side's money-based values remain in the girl. Do these people work for a living?

    • among_primates

      Is that all you take from this, a deep focus on pot brands?

      Also, it seems to be a given in your comment that no one in the world ever bought a Le Creuset pot unless they suffered from "money-based values." Perhaps they wanted an enamel pot, as opposed to a metal one that might get scratched up -- someone with an environmental condition might care about that. Or maybe they just like enamel for cooking. Who cares? Judgmental much?

      • jill neimark

        LOL, I missed that one. That's hilarious. Yes, I get them because I can actually taste the metal ions from stainless steel pots (in fact, I can't even wear metal jewelry anymore) as opposed to enamel Le Creuset, and besides, Le Creuset last forever. And both my partner and I went on working with our aircards--we are portable. Goodwill and thrift shops, actually, are not amenable to me: fabric softener all over the clothes, sometimes pesticides where boxes of things have been stored, and a lot of musty odors.

    • jill neimark

      For this and every story I write I get paid. That's how I earn a living.

  • Belinda Brock

    well-written piece, thanks for sharing. when you camp out, how do you avoid pesticides?

    • jill neimark

      Hi Belinda Brock. Do you mean pesticides the park might have used? Or do you mean pesticides I would use? For the latter, I don't use them. I keep ants out by various devious means, which includes rings of Comet with bleach around my truck tires (they won't cross it), and coconut oil or vaseline smeared on cords, and tent stakes. They can't grab onto oily surfaces. As to mosquitoes and gnats, I sometimes end up bitten, because I don't spray Off, etc. For the campgrounds, or RV parks, they generally don't spray. The main problem is ants, and sometimes they will put a granule type poison on the mounds. I've never seen them spray outdoors. One concern I *would* have would be camping in areas out west where they have dropped toxic pink fire retardant in great plumes to put out wildfires. I might be hesitant to go into those areas for a few years. In GA when the Okefenokee swamp burned it burned for a year and was as bad as wildfires out west, but they let it burn to cleanse itself, and simply put rings of fire to protect neighborhoods. Eventually it burned itself out and then not suprisingly, two very wet years have followed.

      • Belinda Brock

        jill, thanks for a prompt and thorough answer. actually, i was referring to the camp grounds. i was thinking they might fog for mosquitoes.

  • Shirley0401

    I'd be curious to see how the author's insights might be joined to a lot of the interesting variations of the radical simplicity (or voluntary simplicity) movement. The more I read about people taking intentional, definitive steps away from materialism and traditional indicators of success, the more optimistic I am about our (and my own) possibilities for the future.
    It's incredibly heartening to read about someone taking conscious steps to figure out a life that works for her, even if it involves stepping away from the conventional path to success or reward. Part of what I think is so insidious about the many sicknesses (ones such as yours, Jill, as well as more existential ones) that seem to be a given in our modern society is the fact that they are so deeply intertwined with the foundational structure that the society is built upon. (How can you get away from the city when the city feels like a necessary part of your identity? Leave the city, you suggest, and perhaps your new identity will present itself.)
    I've recently discovered Aeon, and love the long-form, thoughtful articles. Between this and the John Quiggin pieces I read this past weekend, it feels like a new go-to site to check in on every few days. It's refreshing to see well-written, clearly reasoned, and measured writing on alternative ways of thinking and living that challenge the conventional limitations we can fall into treating as immutable.
    Thanks for the great work.

    • jill neimark

      Thanks for the provocative thoughts. I think someone who posted this on twitter, pointed out that not everybody can leave the city they're in. You simply might have a job there that supports a family, for instance. Certainly it was terribly hard for us, for all the obvious reasons. And I can say, I doubt I'd do well in a really remote place fulltime, without access to a city within some hours drive. Cities offer a lot: Atlanta has tremendous food I can't get elsewhere and I mostly have to prepare my own from scratch (Vonnie's greens -- vonniesgreens.net --; Your Dekalb Farmer's market: www. dekalbfarmersmarket.com ; R Thomas Restaurant, a favorite healthfoodie heaven, which produces homemade coconut water kefir that has seemed to cure my migraines etc...), medical care I'd never get out in the boonies and I rely on, etc. So I still orbit a city. I don't mind being four hours away to camp, but I prefer to be about 2 hours away, and for instance, Elberton, GA really does have clear enough air to see the entire milky way, but is only 2 hours from the city. I think the question is balance--which is so different for each of us, at different points in our lives. Thanks again for your thoughts.

  • Barbara Duncan

    Jill, Thank you for your beautiful, clear prose on living with Multiple Chemical Sensitivities, which I also suffer with. This article and the one in Discover magazine were such a solid start to bringing public awareness. Question: I thought about camping, but worried about the outgassing on the tent material and synthetic sleeping bag materials--did you have any problem with this?

    • jill neimark

      Hi Barbara, yes, many tents need to be outgassed. The higher end tents often have noxious chemical coatings that protect them from weather extremes. However, I have found a few that give me no trouble (but YMMV). I tend to get cheap tents with LOTS of mesh, made by Wenzel, under the name Wenzel or Mountain Trails. I would say about 3/4 is mesh. Even with the rainfly on, therefore, there is a lot of airflow. If it's cold, I then tarp over the tent to create another "wall" (or in rain, since the rainflies on these cheap tents are inadequate). I use a great silnylon tarp from a canoe place...now I'm forgetting the name. The tents usually cost about $50 and because I overuse them (ie not just a few weekends a year), they get grotty quickly. Then I either give them away or ditch them and get a new one. Another excellent tent is the northface brand. I have a Flint, which is really small, all mesh, with a rainfly. But for instance, some REI tents take a while to offgas even though well made. I'm very interested in trying the Paha Que Green Mountain, and willing to offgas it for a while. As to sleeping bags, I am pretty okay with them. I like Northface. But I hear that for more sensitive folks, Wiggies is a good brand. You can also use wool blankets. Thermarest mats are well tolerated by most EI. Some cots are pretty stinky (again, they may be meant for heavy use by hunters) but the REI comfort cot is terrific, and their other folding cot is also good. Another option is to rent a used tent from REI for the weekend (sniff them for mold, though). See which model you like.And finally, yet another option is to slink a hammock between two trees, and make a "roof" with a tarp over it. You can find nylon hammocks on sierra trading post, campmor, REI, etc, often for just $20. You can find pics and youtube videos on how to make a tarp roof over a hammock. Paul has done this at times.

  • Michele

    I would not be able to camp due to woodsmoke from camp fires. I have MCS and wood smoke is very bothersome for me.

    • jill neimark

      Campfires are definitely a problem, as I mentioned, when people don't build them properly. However, it depends where you are. There are fire bans throughout much of the west and southwest, for instance, so nobody is building campfires anyway.

  • Kat Dawes

    Thank you so much for this. Have you read Jack London's 'The Cruise of the Snark'? Chapter 10 describes The Nature Man, who is apparently beyond medical help until he escapes and lives in the wild, eventually ending up on top of a mountain in Tahiti, growing his own food etc. and in excellent health. He faces the same prejudices as those who seek alternative lifestyles still do, and at one point was carted off to a mental institution. It's inspiring, as is your piece.

    I was interested to read about TILT, as I think I may have something similar from a damp mouldy town house I lived in for a few years. The docs could never tell me why I got pneumonia and then kept getting chest infections. I was hardly able to walk about at one point. Being gentle and good to myself was the only thing that worked, and that includes living in a log cabin in a remote area, eating right etc. If I forget, I get sick again!

    One day, I hope to build my own eco home; in the meantime I'll camp more.

    • jill neimark

      That's neat. Glad you got out of the mold and into a log cabin--those are very good as long as you can handle the terpenes (they often are made of pine, cedar and other aromatic resilient woods).

  • Lucinda Hodges

    Truly enjoyed and was inspired by your article. I wrote a blog on Frugal Travel entitled: How to Vagabond around America on Five dollars a Night or Less, and I think it dove tails well with your article. I hope you don't mind if I share it. Nothing boosts our health like time in the wild places of the world. http://pariahahealingjournal.blogspot.com/2011/03/frugal-travel.html

  • Albert Donnay, toxicologist

    Thanks for this excellent article. I encourage readers to take a close look at Jill's photo. She has the "Tell Tale Face" of carbon monoxide poisoning, in which one eye appears lower than the other and the mouth is pulled up on the same side [This is named after Edgar Allan Poe, who was poisoned by CO from gas lighting, and wrote about his symptoms extensively in stories like Fall of the House of Usher and the Tell Tale Heart]

    The chronic oxygen deficiency associated with CO poisoning commonly manifests as chronic fatigue syndrome, fibromyalgia and not just multiple chemical sensitivity but multi-sensory sensitivity--or MUSES syndrome--in which people become much more sensitive not just to odors but also to lights, sounds, touch, taste, and other sensory stimuli such as hot weather, vibration, and sometimes even EMF from cell phones and computers.

    Another common indication of CO poisoning in women is that their PMS symptoms get much worse when the illness begins. This is because women make more CO than normal during this phase of their period (from the increased breakdown of hemoglobin in their blood to recover iron) and this syndrome is essentially about becoming hypersensitive to CO after some period of CO poisoning ends. Just as ex-smoker become sensitive to second hand smoke.

    Men also make CO all the time and moreso in response to stressors of any kind, but they are spared the monthly spike.

    If these symptoms match your experience, check out http://www.mcsrr.org

    The good news for Jill and others with the Tell Tale Face is that CO poisoning can be easily tested via blood or breath and is easily treated with supplemental oxygen or simple breathing exercises. Most MUSES cases recover within 4 months of daily treatment, but if untreated, the syndrome may persist for years or even decades as CO binds aggressively to heme proteins in tissues such as myoglobin in muscles, neuroglobin in nerves and cytochromes in mitochondria. A very small amount is metabolized to CO2, but most just stays in tissues unless and until treated.

    • jill neimark

      This same slight facial anomaly can be found in other relatives, so is likely genetic. And no, much of your description doesn't match my symptoms, nor does it match my history (lyme/babesia and then severely water damaged building). Thanks, though.

  • Xhosa

    Hi!

    We car camped out in the southwest for awhile, and I'm curious about how often you go into towns, how often you buy foods, and how you store it.

    We've always loved the ideal of living out in wilderness-like area mostly full time but wonder about food (we eat ancestrally/"Paleo"-like... would love to learn to hunt wild game) and have always been quite worried about ticks. :)

    Do you have any tips for someone who might wish to embark on living part-/mostly-full-time out camping?

    Thank you for writing this article. It was very inspiring. :)

    (I also appear to have some sort of extreme sensitivity to chemicals, unclean foods, and even TV's and cell phones and computers. I'm not quite sure what that's from - still investigating it. I would love to return to camping a lot more, either way, though. Cities are simply too bright at night... :) )

    • Xhosa

      Oh - I've found that good fermented foods seem to help me a lot, too...

    • jill neimark

      I use an Engel fridge/freezer, and it has to be run either with a solar panel or on electric (grid). We also use a cooler. We have a coleman folding camp grill, a propane one burner stove, and a crockpot.

  • Philip Savell

    Thank you Jill!

  • Patrick

    Fascinating article and great comments. Have one question which is what was the N. Florida campground or is it a secret?

    • jill neimark

      Hi Patrick, it is Osceola National Forest, about half an hour from Lake City, Fl. It's a wonderful place, no reservations though. 19 water and electric sites, a lot of water only sites, and then a bunch of primitive sites in a more wooded area.

      • Patrick

        thanks

  • Joey Tuan

    What a wonderful piece, Jill. Truth to power.

  • lymechic

    great article, jill. i admire your determination to get better at any cost. it seems odd that you attribute a whole lot of generally 'toxin' based problems to external toxins and not tick borne infection(s), when the symptoms can be identical. how is one ever to determine whether lyme toxins are making you feel awful, or enviro stuff. hope you can find some more natural antibiotics for fight your lyme.

    • Jill Neimark

      Hello lymechic. My experience is that chronic lyme or tickborne illness, in the genetically vulnerable, renders you more susceptible to environmental illness. Perhaps it is because in the genetically susceptible certain pathways, enzymes, or antioxidants are overwhelmed. Many with lyme do *not* suffer from EI. You would need a pre-existing genetic vulerability(or more than one). The symptoms are not identical (lyme and EI). I am not sure what lyme "toxins" are anyway. Has anybody identified "lyme toxins"? (beyond renegade doctors assuming they exist).

  • Deb

    Inspiring article. Thank you, Jill. I wanted to share an inexpensive treatment that has been making a huge difference for me. It was a post on the brilliant Lyme expert, Dr. Deitrich Klinghardt's, belief that the two biggest things that must first be treated in those suffering from neurotoxic illnesses are parasites (mainly lungworm) and chronic nasal staph infection. These nasal infections enter the hypothalamus which leads to suppression of MSH, which is related to chronic fatigue and much more. THE GREAT NEWS is that the treatment is so easy and so relatively inexpensive: Mimosa pudica powder is an Ayurvedic herb that is 30x stronger than the best medical drug. The dose is 1/2 teaspoon 2x a day two days a week, working up to 1 teaspoon daily for 3 months. In addition, use daily nasal rinses that combine the following 3 ingredients: salt, baking soda and xylitol. The nasal parasites eat the xylitol, bloat and die. I have been adding a little of the mimosa pudica to the nasal rinses, and I feel like I am returning to my old self before the neurotoxic exposure. I have tried many, many treatments, but this one is working by far the best for me. Wishing each of you a return to a healthy state.

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