Sunday, September 4, 2011

Back at home, fading like an old flower

As soon as we got into humid Arkansas, everything shifted.  At first a tiny bit.  But soon I could feel my good state of health slipping away.

We camped at huge Lake Ouachita, said to be the cleanest lake in Arkansas, and after setting up at an exquisite site on a narrow peninsula, we went for a dip.  An hour later we were both itching.  A hot shower before bedtime helped a little, but sleep was light and difficult  (usually one of the first signs of an exposure to some toxic trigger.)   A raccoon the rangers nicknamed Daniel kept me up chewing on  the gluten free bread and Whole Foods chocolate bars he stole from our unsecured cooler. He devoured  2 1/2 chocolate bars, including one with espresso beans..  I'll bet he was wired the next day!

I've heard from 3 other PWC's, all with mold illness induced CIRS, that they can't tolerate being near lakes.  Some think it could be the ciguatera toxin from algae blooms.  A related chemical, labeled a ciguatera epitope, has been found in the blood of 96% of CFS patients tested at the University of Hawaii.  The National CFIDS
Foundation has sponsored this research (see but their theory has not been taking up by many other researchers.  I hope they figure out what this 'epitope' is, since it's supposedly not the exact same thing as the ciguatera toxin that Shoemaker discussed in his earlier research on biotoxin illness.  If it turns out to be, then 96% of people with CFS will have CIRS from ciguatera.

In any event, no more dips in 'clean' lakes for me.  I'll stick to mountain streams which move too rapidly for algae blooms.

The day before we landed in Arkansas, we stopped in Oklahoma City.  Despite the high temperatures (102 degrees on, 105 on a local bank sign), I felt fabulous.  David and I walked around the botanical gardens, drove to the riverfront and walked around there, ate ice cream.  In the past I would've been beyond exhaustion by now.  But I wasn't.  So we walked around more by visiting the Memorial to the 1995 victims of the bombed Federal Building.  It was moving -- beautiful and peaceful and evocative.  I still felt energetic walking back to the car.  It was 7 pm and we'd been touring for over 3 hours!

 David wanted to get far from the city, so we drove another two hours to Lake Okmulgee State Park and set up camp in the dark.  We were a bit further from the lake than we were the next day, and I slept great. Also, Lake Okmulgee was not 9 feet lower than normal, although it was low.  I took a quick dip in the morning but didn't suffer any ill effects.

We brought the rain everywhere we went, starting in Pike National Forest, where it rained the night before the wedding after months of drought.  The rain followed us south, and in Santa Fe, was relentless -- 3 nights in a row, nonstop the last night,  In Albuquerque we had a drencher as we drove to a campsite and another drencher visiting a friend in the NW quadrant of the city.  It rained a bit at Lake Okmulgee, and at Lake Ouachita, which was 9 feet low when we arrived, the sky opened buckets.  We drove away the next morning in rain so thick we could barely see the road.

Crossing the Mississippi into Memphis, the rain stopped by I could feel my energy ebbing.  We drove north into Kentucky and camped in a state park near Mammoth Caves.  I still felt so good that I took a long evening walk to the restrooms to enjoy the luxury of hot water and flush toilets.  David was a saint and moved the tent after we'd set it up because the smell of a campfire started to bother me.  I wanted to take a hike the next morning, but just took the short, 1/4 mile walk down to the cave entrance from the visitors center.  The way back was a steep uphill, and I amazed myself by keeping up a good pace and not feeling winded..

 I was determined to maintain my gains when we got home the next evening.  The air was cool and the humidity unusually low for Ohio summers.  I inhaled the smell of oaks and maples and pines and fresh cut grass with sheer delight.   But my body was less thrilled.  II could tell by the way I felt as soon as I got into the house.

I tried to be careful, wearing my respirator in the house "just in case".  Yet by the end of my 2nd day back, I was starting to get fatigue, and by the end of a week, I was noticing the return of respiratory, neurological, cognitive, and endocrine symptoms.

I wrote out a list of the symptoms that returned.  They are:

  • headache behind left eye
  • moody, irritated
  • increased stress hormones and lowered ADH  (need to pee often and urgently)
  • unable to fall asleep
  • unable to stay asleep
  • restless legs and mild cramping
  • mild bloating or feeling of too much fullness after eating
  • stronger need to eat with less ability to wait
  • no desire to do anything physical
  • pain in soles of feet and the prelude to having trouble standing
  • more fatigue
  • bit of nasal/sinus congestion

I am now at a place where I can feel when the CIRS response flares.  As if the inflammatory cytokines are coursing through my bloodstream and into my brain.  And they probably are.  

I had my heart set on Santa Fe as a place to relocate.  I visually loved the city and the surrounding landscape.  But after 'camping' at the Hilton our first night in town, I got so sick that I really couldn't enjoy doing much in Santa Fe.  It rained every night we were there, as August is their 'monsoon season.'  I don't know if not feeling good there was due to the normal 2-3 days to recover from an exposure, or from increased levels of mold in the Black Canyon forest where we camped and in the city, where many faux stucco houses with flat roofs have inadequate drainage and become mold factories during the wet season.

I know only that the next day, when we stopped at a campsite in the Manzano Mountain range after driving through pouring rain and mud, I felt fabulous and wanted to take a hike for the 1st time in 12 years!  That feeling went away when we got back into the city, I took one whiff of my friend's apartment, and knew I could not tolerate the indoor air.

The trip taught me how healthy I can be in the right environment.  I also learned that just going into stores can trigger a CIRS reaction that continues hours later.  If I don't get back into clean air soon, as I learned from doggedly sleeping in the plush bed in the Hilton, I will get worse, and the reaction can take days to get out of my system.

But where is this healthy environment?  A campsite in a national forest with composting toilets and no running water is tolerable for a few nights, but not a few months.  I've contacted people on internet lists such as Sickbuildings who have walked this path before me.  Almost all say they wasted years and lots of money looking for a safe house.  Most advise me to leave my house and all my belongings, buy a piece of land, and build a safe house.  OMG

My temporary plan -- to the extent that I have a plan -- is to do a bit more camping someplace warming than Ohio.  I'm not thrilled at the prospect of investing in an RV, nor am I thrilled at the prospect of heating my shower water in a kettle and carrying my food around in coolers.  But I trust that the solution, for the time being, will come to me at the right time.

Now is not the right time, although I'm fading here in Ohio.  I have to harness my energy to get things done so that I can leave without abandoning obligations. This weekend I had a yard sale.  This week I will get some medical tests done.  I'll spend time doing research on campsites with running water and showers and not too far from organic food supplies.  I also have to look for a new car, since the carpeting in mine has a musty odor  and I now drive it with all the windows open.

The good thing is that my body has spoken loudly and clearly.  It's telling me what it wants -- clean air, far from pollution of cars and buildings with all their chemicals, moderate to low humidity.  My job now is to find the courage to give it that gift for several months in order to break the vicious cycle of inflammatory reactions and let my system settle into a new set point.  I'm excited to see where that point might be.

People on the internet have been great support.  We've had an active discussion about camping as an intermediate step in the healing process from CIRS on the sickbuildings yahoo list.  The locationseffect site   has provided interesting information, and various friends have chimed in with helpful suggestions.

If you know of a temperate climate, not desert, not humid, where I can live outdoors much of the winter, and have organic food accessible, please let me known.  I'm even open to 'renting' someone's back yard!

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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.