Friday, November 25, 2011

Learning about contamination

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 Tucson Mountain Park, 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.  .  

Tuesday, November 15, 2011

Strong and vigorous, or weak and tremulous

Imagine feeling great when it’s cold outside.  To warm up you get in the baths or the sauna.  You sweat, you drink lots of water, you detox.  You come out feeling warm and less toxic, and the effect lasts for several hours.  If you’re lucky, the desert sun warms the chaise lounges by pool enough to lie outside in your bathing suit until 3 or 4 pm.  You make dinner with a floodlight if the weather is clear.  If rainy, you find a restaurant.  After dinner, you walk down to the pools and sauna once again to combine detoxification with relaxation. 

After you disconnect the air [un]freshener in the public restroom, the smells no longer bother you.  You climb into your tent and slip under down quilts and flannel sheets, fall asleep right away, and in the morning, wake feeling rested.  It’s 6 am.  You throw on a sweater or jacket and watch the rosy fingers of dawn lift the sun into the sky.  In a short while, it’s warm enough to remove your jacket and replace your wool socks with flipflops.  You heat water for breakfast tea on your Coleman stove, make eggs or hot cereal or gluten-free French toast, and still feel good enough after breakfast and clean-up to do something.  You know you have CFS but you don’t feel sick.  On the contrary, you feel strong and vigorous. 

It’s only when you do something more strenuous, taking a 1.4 mile hike through a nature preserve in the desert, that you experience your limitations.  In the past, 1.4 miles would have flashed “DON’T WALK” in large red letters in your awareness.  But since you’ve been feeling so good, you think you can handle it.  It’s 7:30 am and still cool.  The sky has filled with light gray clouds.  The path has more downhill and uphill than you expected, and the desert sand is often as soft as the sand on a New Jersey beach.  You tire when you reach your destination, lie down on a picnic bench for 20 minutes, and conserve your energy on the way back to the car by walking in silence.  Still, after eating breakfast and going to the pools, you feel fine at the end of the day.  PEM is no longer your shadow!

So you find yourself wanting more.  You believe you’ll feel better as you release more toxins.  You’ve seen Dr. Rea and Dr. Hope, both of whom said you’ll become less reactive as you become less toxic.  And your naturopathic training has taught you that removing toxins facilitates self-healing.  The toxins, whether mycotoxins or xenoestrogens or pesticide residues mess up hormones and neuropeptides in addition to creating inflammation.  With a lower toxic load, neuro-endocrine-immune functions will work better.

Consequently, you visualize yourself in a little house with tile floors or marble floors, a covered patio and lots of windows.  Outside it is warm and sunny.  In the house you can keep your things organized, your refrigerated meds at easy access, your nebulizer hooked up.  You imagine doing your coffee enemas and CSM on schedule, reading at night in bed, and making food on an electric stove.  You decide to try four walls and a roof once again before you give up on the great indoors and escape to summer in S. America, Hawaii, or the Caribbean islands. 

Your first stop is an RV dealer.  The sizes and prices vary greatly.  Your husband wants to transport a trailer behind his 6 cylinder F150, which means you have to find something lightweight and small.  You look at several 16 to 19’ trailers and find them all depressing.  They’re fine for a short camping trip, even a month or two in the summer.  But you know living in them for 4 winters months will not work out well.  Besides, the new ones still smell of formaldehyde and the old ones could have mold, since older RV’s are notorious for getting roof leaks and growing mold.  Many MCS, CFS and EI people buy them and strip them to remove any materials that outgas and grow mold.  But you have no place to do that, and can’t wait 6 months for a place to live.  Besides, the idea of living in an RV park inside an 8 x 15’ space is hard to digest after living in an overly large house.  And so you return to your tent.

This has been my life for the past 10 days at Sam’s Family Spa in Desert Hot Springs.  

Sam’s is a nice place to park an RV, but not such a nice place to pitch a tent for those you like privacy and the feeling of being close to nature.  But if you’re into mountain views, Sam’s has them a plenty: ranges to the north, south, east and west – with openings for the Coachella Valley’s I-10 to carry vehicles (and pollution) to and from Los Angeles.  The air has the constant haze of pollution.  Even in nearby Joshua Tree National Park, which extends many miles to the east of Desert Hot Springs, the ozone data from the various government agencies rank it as ‘moderate,’ one step below the level considered risky for the sick and elderly. 

I did well here physically, and found myself wanting to stay on as my strength and vigor increased.  I didn’t react adversely to anything until the day it clouded up and some odor rose near the pools.  The barometric pressure dropped.  Lying out in the sun required wearing jeans and a shirt.  On that day I felt tired and dozed off after lunch.  I wondered why I was suddenly tired.

An internet friend (Lisa) showed up at the place and we transformed our virtual Facebook friendship into something three-dimensional and material..  She came by the pools shortly after I awakened from my nap and asked “Did you feel anything different this afternoon?”

“Yes,” I answered.  “I suddenly felt so tired that I dozed off.  This is the old CFS-ME me, not the new me who sleeps like a babe at night and no longer needs to nap.”

“I think you felt the stuff I’ve been talking about.  It’s not mold, but maybe something rising from the sewers that seems to come out at times in many locations.  It’s not so bad here, but when it’s worse, I get an extreme reaction and almost immediately feel suicidal.”

Interesting, I thought.  David came by a little bit earlier and was full of negativity.  He said it came on after he went into town.  I wonder if he was also affected by the same energy even though he doesn’t have CFS.

The next day, I was normal again, despite the constant drizzle of rain, some of which infiltrated the tent and leached into my clothing, causing me to wrinkle my nose as the wet patches in socks and slacks touched my warm skin.  I walked over to find Lisa and soon forgot out them, perhaps a record for me in dealing with unpleasant temperature changes and weather.  Amazing!!!

I love feeling strong and vigorous, watching my body deal with all kinds of things that in the past would have sent me to bed with a sour face and whining voice.  I’m happy, amazed, and sick of camping.

Fast forward to our arrival Sunday night in Tucson, where Kristy has a rental unit out in the country is the middle of nowhere that we agreed to rent for a month.  We drive the back way from Ajo through the Indian reservation, oohing and aahing at the magnificent saguaro cacti rising from fields and hills.  There are few road, no industry, no farming. The air is clean yet wet, for it’s been raining all day, even though our 7 ½ hour drive took us through sunshine until the last hour.  We walk into the house.  It smells like heat.  There’s a space heater in the bedroom and a heat pump with ductless heating in the den.  Otherwise the place looks inviting.  I turn the heat off and open the windows to air the place out. 

David lies down on the bed to take a nap.  I unroll my freshly washed yoga mat in the den and start doing yoga.  The smell of the mat starts to bother me and the thought crosses my mind that the place will not work out.  I push it out of my mind, roll up my mat, and take care of making dinner in our tiny but well-equipped kitchen.  I don’t want to fail, don’t want to be outdoors.  It’s cold, rainy, and I drove all day (9 – 5).  I set up the tent on the covered patio as a back-up in case I can’t sleep indoors, and I set up an air mattress on the floor of the den.  With three options for sleeping (the bed is the 3rd), I’ve covered all bases.

After dinner I lie down on the bed to do my nasal glutathione.  My heart is pounding.  I recognize the signs of a virulent reaction to some mysterious thing that exists indoors.  I hope I’ve caught it early enough and announce I’ll be sleeping out in the tent. I still want the house to work out for cooking, bathroom, and rainy days.  I put a wool sweater on over my pajamas and crawl into a down sleeping bag, reading for a while with my headlamp.  My heart is still pounding, my hands are ice cold, the tent fly flaps in the wind and triggers my startle response.  A pack of howling coyotes sounds quite near and coming nearer.  I do not fall asleep until I take a Xanax – the 1st I’ve had since leaving Ohio in September. 

I wake feeling week and tremulous.  David and I confer about our options.  We really don’t want to drive 8 hours back to Sam’s and live outside in our tent.  So he decides to remove all porous items from the house and clean it thoroughly.   He isn’t happy about cleaning a house again; in fact, he’s downright hostile to it.  But the alternatives seem worse.  And so I spend as my time outside as the cool weather permits.

After a day outside, I’m doing significantly better than I was in the morning, but I’m still not weak and still prone to that feeling of inner trembling.  We decide to give me a week to adjust.  If I stabilize and don’t improve, we’ll use the place as a base to shop for an RV or plan a camping trip in a part of the world experiencing summer.  If I get worse, we’ll have to leave ASAP. 

I sleep outside that night in the tent, falling asleep easily and sleeping many more hours than normal.  All that sleeping concerns me, but I tell myself to keep an open mind.  It takes a few days for an inflammatory cytokine storm to move through the cascade of effects.  In the meantime, we’ll get clarity about our next move.

Tuesday, I’m still aware that something isn’t quite right in the house, but only the bedroom seems to trigger me.  I’m okay in the bathroom and kitchen, where there were never porous objects to remove.  The den, which had only a few sofa cushions and a musty mattress stored in the closet, is where I spend the rest of my indoor time.  The computer modem is in this room and I’m glad to have a connection that doesn’t drop me every 15 minutes.  I increase my detox protocol – a 2nd coffee enema in late afternoon, a 3rd dose of cholestyramine.  I don’t have nearly as much sinus pain nor do I have palpitations.  I start to think the place will work out for a month.  Even if I don’t continue to improve for the winter, at least I could stabilize.

As night falls, my feet and ankles are cold.  Oops, this is a bad sign, for I only get cold ankles when my immune system has started to react to some inhalant.  I’m leery of putting on the heat, and even with 2 wool socks on each foot I feel cold.  I start dreaming again of going off to a warm beach where I can comfortably live outdoors.

Don’t know yet what tomorrow will bring.  It’s a life of uncertainty.  We try to view it as an adventure, but sometimes the old worrying habits get in the way.  At least we developed an emergency escape plan today.  Like all such plans, we hope we don’t have to use it.  But I must say, having had a taste of nectar, I want to bathe in its sweet waters again, and I’m not sure I’m willing to compromise.  I’m about to get another blessing from Mr. Trivedi which I hope will increase my intuition about the best course of action for my future.

For those interested in reading about the experiences of others with CFS who have also found their symptoms dissipate and their strength return when traveling or moving to a place with clean air, visit the forums at Phoenix Rising and look for the link on Hawaii.  

Thursday, November 10, 2011

A reply to comments

I thought I’d take up the challenge of answering Karen J.  She wrote, in comments to my most recent blog,
You "felt the lethargy and fatigue of" your "WORST CFS", so you took a swim, did some yoga, and were still tired?  Can you see what's wrong with the picture Janis? Seriously. Talk about stressing or overstressing your overstressed, overtaxed adrenals.
I still don't know what you're running from. I hope you'll address this in your next post.

Okay.  I can see that someone who doesn’t know me and my activity level would find my wording vague and confusing.  I intended to convey the quality of the fatigue and lethargy, not the degree of it.  Obviously, during my worst times, I wouldn’t even go in the water on a warm day because I’d feel too cold.  But those of us who live with this illness know that fatigue doesn't even get close to capturing it what we feel.  It’s a close approximation, and sometimes moving around, cooling off, or getting fresh air can transform one from turtle mode to rabbit mode.   Then, I used the wrong word.  I didn’t 'swim' using any action that propelled my body from one side of the pool to the other.  I just took a dunk and cooled off, then hung over the edge of the pool. 

I often do yoga when I’m very tired.  I have yogini friends with CFS or Lyme or CIRS who also do yoga. Our practices vary, but they don’t entail 108 sun salutations.  Mine often has consisted of a practice entirely on the floor on back and belly.  I start this way, stretching slowly and breathing.  Sometimes I feel energized enough to do some standing poses or downward facing dog.  Other times I move from supine poses to seated forward bends.  It all depends on how the breath and the movement affects the energy flow in my body. 

I know there are lots of PWC's much worse who can't tolerate even a tiny bit of stretching. Throughout my 23 years of illness, stretching has saved me by reducing body pain, increasing circulation, reducing depression, opening up channels of energy flow.  During my worst relapses, I'd do an hour or two daily of restorative yoga, which involves putting the body in supported positions with bolsters and blankets.  When orthostatic intolerance turned into severe POTS, I did an inversion practice (headstand, shoulderstand, etc) twice a day.  Otherwise, I couldn’t function and could barely digest my food.  Yoga postures have a profound impact on the body, opening the flow of prana through the nadis and meridians.  When I do yoga, my tissues become better oxygenated and my organs function more effectively.

Lastly, Karen asked what I am running from.  My answer is that I am running to not from. But I’m not actually running.  I’ve been strolling leisurely, making my way from Ohio to California too 40 days.  I didn’t know where I was headed exactly.  I followed my inner guidance, and the suggestions of helpful friends who’ve found healthy environments in dry climates in different parts of the country.

I am looking for a place that appeals to my spirit and has clean air that my body likes to breathe.  I check the data from the EPA and other organizations if I like an area.  I look at the horizon, the visibility, the clouds.  When I find the place I’m supposed to live in, I’ll know it.

I won’t return to the part of Ohio where I got sick because of the high concentration of mold and mycotoxins in that high humidity air.  I’ll find an arid or semi-arid climate.  I won’t be in a big city, and I won’t be living near industry, but I’ll be close enough to civilization to purchase organic food and locally grown food.

I saw Dr. Janette Hope yesterday in Santa Barbara.  She confirmed my suspicion that I’m dealing with fungal infection in my sinuses even though the nasal cultures have thus far come up negative.   Because of this chronic infection (as my friend Robin explained to me from her contacts with Dr. Dennis), whenever there is moisture and whenever there are mold spores in the air, the sinuses get worse as the colony grows.  Dr/ Hope likes to treat this with anti-fungal nasal spray.

She confirmed my experience that the desert is an easier place to heal from mold illness.  Furthermore, at this stage, where I have only been away from the toxic environment for 6 weeks, I’m experiencing some unmasking, that is, reacting to things that I didn’t seem to react to before but which were toxic to me.  It’s my body’s way of making sure I get what I need to heal– clean air and clean water.

Mold and high particulates in the air we breathe all contribute to toxicity, tax the detoxification system, and in some of us, trigger a rapid inflammatory response in the brain and throughout the body.  Dr. William Rea has written many well-regarded books on this, starting the field of Environmental Medicine. He found that people who become toxic from a variety of causes have similar symptoms due to the way toxicity effects the nervous system, digestion, immune response, and cardiovascular system.  He actually started out as a thoracic surgeon and found that toxicity was at the root of the heart disease in his patients.

Similarly, Dr. Shoemaker has found that multiple biotoxins create a similar pattern of illness.  Mold, dinoflagellates, algae,and Lyme disease create an inflammatory condition that is chronic which is diagnosed by 6 or 7  biomarkers.   Once and individual has become sensitive to certain triggers (whether mold, pesticides, metals, BPA), the  inflammatory response creates a cytokine storm which is responsible for the symptoms we associate with fatigue syndromes.  Although neither Shoemaker nor Rea talk much about viruses, both acknowledge the important depletion of T regulatory cells in illness created by toxic overload.  Viruses and other infections take advantage of the weakened immune system and establish themselves. 

I know it's common to blame CFS on adrenal exhaustion (I was a practicing naturopath with graduate certification in natural endocrinology and worked all the time with salivary adrenal hormone testing).  However, in CIRS and most CFS, the adrenals are not the driving force behind the symptomology, and nearly all programs to 'fix' them fail to work because of the chronic stimulation of the inflammatory cytokine response.  While adrenal fatigue often responses to bioidentical hormones and glandulars, until the drain on the body is removed, the adrenals will remain stressed.  Hence, detox becomes a very high priority for those who wish to heal from this illness.

Detox involves supporting all organs of the body involved in detoxification (e.g. skin, liver, bowel, kidneys) as well as removing oneself from a toxic environment.  As long as the inflammatory response is still being triggered by whatever the body has become sensitized to, healing will be impeded.  Thus, getting into a healthy environment is step 2 of Shoemaker’s 12 step protocol, and a key part of Rea’s program.