40 days and 40 nights in the deserts of New Mexico, Arizona, and California. But take off the zeros and you have the number of nights I suffered in Kristi’s house in the country SW of Tucson before I wised up and got myself to a safe place. That place was the beautiful Gilbert Ray campground in TucsonMountainPark, populated by tall saguaro cacti, squat barrel cacti, teddy bear cacti (not quite cuddly enough to hug), medium-sized mesquite trees and creosote bushes. The air was clean. Our site was spacious. But still something was wrong.
“It takes a few days to clear up from a reaction,” I said to David early in the morning after a night spent tossing and turning with very little sleep. It was my third night in a row without sleep, and I was still buzzing in the hyper-excitation state of a reaction to something resembling mold. I moved around all day, amazed at how well I was doing considering what I’d been through. I sent David to the Laundromat to wash the duvet covers to the quilts which he’d used (how stupid we had been!) in Kristi’s house after cleaning it up. I climbed into bed the next day certain I’d sleep like a baby.
Alas, it was not to be despite my immense fatigue. I snuggled under the covers and within a few minutes, felt the creepy crawly sensation through my legs, the one that makes me wish I could jump out of my body. I took a Xanax, squirmed and changed position 100 times. By morning, it was obvious to me that something in the tent had become contaminated from being ‘in’ or near Christi’s house. I had become so sensitive to things from her house that I hadn’t been able to sleep in my tent after I put in a lamp and heater that had been in her house..
The law of uncertainty says that I'll never know exactly what mysterious inhalant is triggering my immune system to undertake a dramatic, fierce inflammatory response. I suppose I could get a better idea by testing, but I'm not ready to drop $300 to ERMI test Kristi's house when I know it's not going to work. Besides, I already spent too much trying out the house, and left feeling angry that she charged us so much more than the place was worth, despite all the cleaning David had to do and the lack of internet connection the first two nights.
Although physically attractive and decently decorated, the house had lots of dust in it. Most likely the dust in the light fixtures in the bathroom contain the history of the house before and since Kristi purchased it on foreclosure. ERMI testing, which measures the DNA fragments in dust, tells us what has been in the house in the past (at least since the last thorough cleaning) and this method of testing can therefore shed light on whether there could be mycotoxins left in the walls, ceiling, attic, and heating ducts. To her credit, Kristi removed the heating ducts from the den room and installed a ductless heat pump. But it would behoove her to run an ERMI if she wanted to understand why she was still sick after all these years. I can guess from my symptoms that mold had once been an issue in the house and that mycotoxins permeated the walls and filled the attic. Perhaps there is still hidden mold. I took her word for it that the house was mold free forgetting that a year ago, I would have said the same about my house.
Kristi is not a moldie. She is ‘allergic’ to mold but has no mycotoxins according to test. Her primary injury was pesticides after Tylenol-induced glutathione depletion and intravenous antibiotics. This proves the difficulty of declaring a house ‘safe’. What works for one person may not work for another. Yet we need to have some standards in the CIRS/MCS world.
We all agree that an MCS-safe house is cleaned without toxic chemicals. Baking soda, white vinegar, hydrogen peroxide, and similar agents tend to be safe for most. But there are no standards for mold, no proofs offered from ERMI or HERTMSI testing. A mold sensitive person as a potential renter ought to ask to see a recent ERMI test.
One of my internet friends has checked out several ‘safe’ houses in the SE and found all of them moldy. The ‘safe’ houses in Seagoville to which Dr. Rea sends his sensitive patients are said to be contaminated by mold and algae toxins carried in the air currents that flow over the many ponds in the area. After a while, the term ‘Safe housing’ seems like an oxymoron – unless you build yourself a mini-biosphere from scratch.
Even after getting away from the house, mysterious contamination loomed over and inside our tent. David washed the duvet covers on Friday after my first night in the campground turned out to be a difficult one. It wasn't sufficient, so we spent a good part of Saturday in a Laundromat washing everything from the tent to the pillows. We hosed off our suitcases and sleeping pads, and let them dry in the warm desert sun. I had a very nice night sleeping (despite some of the Laundromat smells lingering in the blankets – a risk of using public washers and driers where remnants of fragrance and dryer-sheets linger) at last -- a true sabbatical after 6 nights of difficulty.
On the internet, I learned of people who were too sensitive to be near anything from their old house. I was told to throw out everything by some, everything porous by others, everything that can't be cleaned by still others. I followed the most liberal advice, celebrating my fortune in making progress with thoroughly washed and wiped household items that I didn't wish to repurchase at considerable expense. I was so glad I was able to keep my clothes, quilts, and shoes from my Ohio house.
Now in Tucson, for the first time I understood how a damaged immune system can become reactive to the smallest quantity of particles, or perhaps just the energy of a place, for I was reacting to each and every thing that had spent a few days in Kristi's house.
It's difficult and confusing. Does it wash away? Is one washing sufficient?Back in Ohio I'd had to do 3 washings of my sleeping bag with detergent and borax before I could tolerate it. Other things only seemed to take one washing. I think the sleeping bag took more because it had been with me for so long, having been purchased in 1975 and been through many houses and outdoor environments.
The issue of extreme reactivity also raises questions for me. Do I want my body to become less reactive? And if so, in what way might this happen? I like the early warning signs right now when I react quickly but mildly enough to something to remove myself from it before it messes up my thinking, energy, mood, and stamina.
I also think of my extreme reactivity this way: I Just as we want our gut to react and destroy one single amoeba before it can multiply and cause dysentery, so our systems react to anything perceived as a danger. The problem is that environmental toxins don’t multiply, yet my immune system goes all out in attacking them and doesn't do a good job of removing them. The danger, and the damage, arise mostly from the storm of inflammatory cytokines that the immune system releases and from my own inability to return to homeostasis due to my low and non-existent regulatory hormones, such as MSH, ADH, and VIP. With sufficient regulatory hormones and neuropeptides, I could react, remove myself, and feel great 5 minutes later.
Of course those with extreme reactivity have a hard time living in society. Many of those I know who've made the best recoveries from CFS live in trailers, which gives them the freedom to move quickly to a place with cleaner air. If a neighbor sprays pesticides or builds a wood fire and you start reacting, you can't move your home. You can only close the windows and turn on the HEPA filter.
So as much as I'd like to have an [immobile] home in which to live, we decided to look for a mobile one.
After several frustrating days of scanning craiglist for RV ads, visiting RV dealers, and researching how to make our own safe RV from a cargo van or box truck, we reached the decision to continue tent camping. The risk of buying an older home that caused me to react from mold and dust seemed to high. The newer ones reek of formaldehyde. The process of building your own from a cargo van takes quite a bit of work and couldn't be ready quickly enough to help us get through the winter.
I tossed around the possibility of cashing in my frequent flier miles to go someplace where it was summer. Ecuador? Supposedly cheap to live there, but not much information on camping. Australia? Too expensive. New Zealand? I read that at customs they ‘decontaminate’ your tent using who knows what chemicals. The Mexican Baja? We could drive there, but the problems with water, electric, and getting fresh vegetables would offset any benefit from warmer temperatures.
So off we go, back to Desert Hot Springs, to the healing mineral waters, ready to spend a month in an RV park in our little tent. The air is not as good, but the warm baths and the sauna make up for a lot.
Dr. Rea has his patients do one to three saunas a day. The operative theory behind this approach to healing is TILT: Toxin induced limited tolerance. He uses the analogy of a barrel. As it gets full, you can’t put anything more into it. Similarly, when the body is full of toxins, you can’t take any more and so you react. There are some problems with this theory, the main one being that most moldies become more reactive after they get away from a moldy environment. But we’ll deal with that in another post. .