Sunday, December 18, 2011

Live from Phoenix

I’m writing live from the new Trivedi center in Scottsdale Arizona.  The energy here is tremendous, infused with joy and truth.  It’s an amazing experience to feel so good and so consistently over the course of the day.  I hope someday to feel this way 24/7 without Mr. Trivedi’s assistance, for the energy he transmits from the Divine is present for all of us all of the time.

I found a beautiful place to camp at McDowell Mountain Regional Park.  The park sits in a valley surrounded by mountains.  Each site is spacious with ample parking, spacious tent sites, electric and water hookups, and magnificent views.  I arrived after a 5 hour drive from Desert Hot Springs on a windy day.  The tent wrapped itself around my space heater before I could stake it in. As a result, I didn’t get it oriented the way I’d wanted – which was to face the snow-capped peak in the distance.  Yet everything was perfect, as it turned out, for in the morning I discussed I was facing the rising sun.  And sunrise is one of my favorite moments of the day.

For most of my years with CFS, I didn’t see the sunset.  Previous to that fateful year (1987), I was a night owl who could barely rise before 8:30 am.  I always wanted to be an early riser, and often had a few days of that experience when the time shifted around daylight savings.  Now that I’m camping, and falling asleep with ease, I wake almost every morning at the crack of dawn.  And I love it.

This morning, however, the rain was pinging on the nylon tent fly at the crack of dawn, which led me to close my eyes and try to sleep a bit longer.  I ended up meditating and enjoying the luminous energy inside that Mr. Trivedi shared with me yesterday.  During that meditation I had several insights about my journey.  Above all, I stopped feeling upset about the difficulty I’ve had finding indoor housing and started to appreciate how fortunate I was to be living peacefully outdoors, even if not living with ease and the kind of material abundance I previously enjoyed.  At least I am living with a calm mind, with inner joy, and with simplicity.  It’s a big change from waking in the morning and having to write a list of thing to do before I can even clear my mind for a bit to meditate. 

I still don’t know where I’m supposed to spend the rest of the winter.  I like this area.  The weather is a bit milder than in the desert of Eastern California.  It’s easy to drive at night with the wide lanes and bright reflectors.  But I also feel incredibly drawn to Palm Springs.  Now that I can walk around a bit, I like the idea of being in a small city where I can walk on short errands rather than driving.  And, I started taking classes at a yoga studio which is heated to 105 degrees.  It’s not a strict Bickram class (only an hour and somewhat more gentle), but I sweat like crazy and feel as if I’m releasing oodles of toxins.

Before I end, I just want to add that the energy transmissions Mr. Trivedi gives also seem to support the release of toxins.  I don’t know if any research studies have been done to this effect, but according to the principles of quantum physics, two energies cannot occupy the same space at the same time. So if the scintillating energy of divine grace enters a cell, or an organ, it would follow that toxins are released at that same time.  Someday I’d like to see this tested.   

Thursday, December 8, 2011

Back to Baseline

It took about two weeks to recover from the debacle with the house I tried to rent in Tucson.  In retrospect, I should not have stayed and slept on the porch.  I should have picked myself up and left the next morning.  If I had, I would have recovered in a day or two.

The first few days back in Desert Hot Springs were difficult.  We arrived on Thanksgiving Day, noted the cool and brisk wind as we set up our tent, and then went into the office to pay our monthly rental.  Surprise!  There’s an ‘unwritten rule’ at Sam’s that tents are not eligible for the monthly discount.  That doubles the monthly cost, making it tantamount to renting a 3 bedroom house!  To add to my distress, they complained about the tent I had borrowed from Lisa and to which I was testing my reactivity.  “One tent only.”  Even though the rules say “one sleeping unit only,” and I was using the 2nd tent as my office.  So down came the new tent and back into my ripped, leaking old tent I went.

After several days of grumbling, (and talking to various levels of managers), I had a wonderful emotional detox, with flowing tears and wracking sobs, letting out all the pain of loss….of my house, of my Ohio friendships, of the routine of doing yoga and writing, of being warm after dark and having my clothes neatly organized on hangers and in dressers.  Life outdoors is hard.  And the winter weather doesn’t make it any easier.
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The wind blew fiercely on Thanksgiving evening.  But it was fiercer still the following Thursday when the Santa Ana winds raged through the valley from Los Angeles eastward, creating widespread damage to dwellings and trees.  We bought some heavy steel stakes and nailed our tent to the ground, and tied the shade canopy to a palm tree.  The winds here hit gusts of 40 – 50 mph.  We stayed warm in the pools and ate our meals out.

During this entire week, I continued to experience swollen glands and a bit of a sore throat – common CFS symptoms which had come on in Tucson.  But since David had the same symptoms at the same time, and I visited Urgent Care to rule out Valley Fever (a fungal infection in the respiratory tract), we concluded it was a viral infection.  My energy was poor; and I felt cold often. 

It wasn’t until early this week that I felt truly back to baseline.  And so today, to celebrate I took a hike in the desert, resting twice, but finding myself invigorated at the end. 

I haven’t given up on housing.  I saw a beautiful contemporary house with concrete floors and minimal furniture available for a house share.  I fell in love with it, but the owner read my blog (I forgot to delete the link from my e-mail signature) and (probably) freaked out.  I can understand this:  I myself would have judged someone like me as ‘crazy’ and ‘irrational.’ I’m sure it’s for the best, as another setback would be most unwelcome at this point in my healing journey.  But my urge to nest is greater than my fear of another bad experience.  And so I am perusing the classified ads in the paper and on Craigslist until I find a place that feels good to me.

In the meantime, I had blood drawn for lab tests and am waiting with great anticipation for the results.  Will my MSH be higher?  What about my ADH? and thyroid?  I’ve had several nights in which I’ve slept through without waking, which make me hope that some of these biomarkers are coming up. Dr. Hope also started me on an anti-fungal nasal spray that really seems to stir up whatever has been colonizing my head.  That’s another reason I didn’t feel great for the first week.  But my body seems to be adjusting, and the sinus pain is lessened.  And the mineral water in the pools is still feeling purifying and calming to me.  And so I go on, one day at a time, one cold evening at a time, climbing under layers of down at night and warming my clothes under the covers every morning.

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. http://forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-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. 

Saturday, October 29, 2011

What a Crazy Illness!

Sunset my last night at City of Rocks, NM

My stuffed nose disappeared the last day at City of Rocks.  Four days in the desert to clear up and acclimate!  I felt so good in the morning that I took a hike up the camp road at sunrise. 

Surprise!  Just because I feel energetic and strong doesn’t mean I can do anything aerobic—at least not yet.  I was pretty wiped out by the time I reached the top of the road, and instead of walking the entire loop, I returned down the hill (after resting for a while on a picnic table) and felt pretty tired most of the morning.  Next time I try taking a walk, I’ll do it on level ground.  At least walking to and from the bathrooms doesn’t tired me like it used to.  That is progress!

After City of Rocks NM, I spent two nights in a room made ‘safe’ for EI in the suburbs of Tucson.  The air in the room felt stale; but so did the outside air.  It was an attractive residential area, but only one window opened, and it seemed that the air exchange was lacking something.  The owner had converted her garage into a place safe for people with environmental illness, using metal shelving, mold resistant insulation, and tile with non-toxic grout.  I loved having a real kitchen and immediately drove to a supermarket which specialized in natural foods and bought a ton of fresh food, planning to make dinner for my wonderful host.

Within a few hours, I felt the lethargy and fatigue of my worst CFS, but devoid of other symptoms.  My host suggested it was a normal response to four hours of travel plus all the packing and unpacking.  I noted the possibility, took a swim, did some yoga, and was still tired.  I went to sleep at 7:30 pm and logged in more than 9 hours.  The second day, I felt the same lethargy all day, and the need to crawl into bed by 8 pm.  I tried spending most of the day outside, but it made no difference.  So I packed up my stuff and left early the next morning.

On the way out of Tucson, heading for Ajo, I saw a rental house share about 25 W of town which I really liked, so I decided to cancel my plans to drive all the way out to Ajo.  Instead, I headed up I-10 through Phoenix and then NW towards Kingman.  As I pulled out of Phoenix towards Wickenburg, where I’d planned to stop, the air felt clean and fresh (and significantly cooler).  I missed the RV park, and it was still early, so I continued heading north towards Burro Creek (land maintained by the BLM) which I reached just before sunset, enough time to enjoy the stupendous mountain views, find myself a site, and locate the bathroom.  I felt fabulous even though it was windy and cold – conditions that, in the past, would have sent me whining.  It was enough to put on a fleece jacket and some wood socks.  I made a sandwich for dinner and ate standing up at the side of the picnic table.  All the discomfort in my feet and head that gave me orthostatic intolerance in Tucson was gone!  Wow!

View from Burro Creek Campground

There’s not much to do after dark in the wilderness without a tent and lights (both tucked away in the car).  After listening to two CD’s, I was still not tired, and so I got out my computer and started writing this blog.  So much for my Tucson hosts theory that I was tired from packing and driving 4 hours!  I did all the same activities today, even drove an hour further, and continued to feel better as the day progressed.  Does that make sense?  Not based upon my previous experience of 20 years with CFS.  It only makes sense when I think of myself having Environmental Illness (EI) in which certain (unidentified) pollutants and toxins that I inhale or touch are having a profoundly negative effect on my brain and body.  When I get away from them, my body starts to function better.

The air is clean and fresh out here.  The sky is amazing out here.  There are no lights anywhere, not even on the bathrooms at the campsite.  You can see the milky way streaking across the sky.  I’m at a slight elevation (the road was uphill nearly the entire way after Phoenix), and mountains rise on four sides.  The wind whips through the valley, and the temperatures are in the low 60’s and dropping, but with my toasty down sleeping bag and wool long underwear, I have no fear of the cold. Now, after a full day of activity, I’m barely tired. 

Meanwhile, I’m so pleased to have escaped the ‘chronic fatigue’ I experienced in Tucson.   After living with it for 20 years, I have such tremendous joy at my newfound freedom from it.  All I need to do is live in the wildnerness!  Aaagh!  I want the modern conveniences of plumbing and electric and a nice kitchen again.  They’re no longer ‘conveniences’ but ‘necessities.’  And I miss easy access to internet and land line phones (because the cell phone hurts my ears). 

Even though sleeping in my Toyota Avalon is not an experience in comfort (for one thing, I’m a few inches taller than the car is wide, so I need to keep my knees bent all the time), I felt so good in the morning when I awakened that I decided to walk down to the gate to pay my fee.  When I got close, two huge bulls were grazing inside the campgrounds, and a herd of calves and cows were standing outside the cattle guard looking in, afraid to step on the metal slats.  One cow was trying to slide in around a rock at the side of the gate, but not fitting through..  I walked back to the car to get the camera, but when I returned, the calves and cows had dispersed.  It didn’t take long to pack up and head to Wikiup for a hot breakfast.  From there, it was almost another 2 hours to Dolan Springs.
  
In my fantasy, Dolan Springs was to be the wilderness experience near a quaint little town.  If you look on the map, it’s clearly in the middle of nowhere, with state parks and wilderness areas surrounding it, the west rim of the Grand Canyon 40 miles away, the Lake Mead recreation area north and West, the town of Kingman about 40 minutes south. In my fantasy, Kingman would have a great supermarket with lots of organic foods and a Trader Joes.  I stopped for gas at a shopping center that had all the stores normally next to Trader Joes, but no Trader Joes. 

North of Kingman the landscape changed.  No more stately Saqqara cacti, just acres and acres of sandy dust and little shrubby bushes.  I was quite disappointed, and for whatever reason – the mysteries abound—I started to get pain in my left sinus.  Was it emotional?  Was it because I got stuck behind a diesel truck on the uphill?  Was it the dust in the air?  Some pollution or industry around Kingman?  As always, many questions, no answers.  I guess it’s not for me to know the specifics, just to learn to trust my bodily experiences and honor them.

Dolan Springs looked like a typical Western town right out of the movies.  Dollar Store, no-name supermarket, one paved street through town, lots of trailers, RV’s, mobile homes, a few cafes, restaurants, a gas station, a chamber of commerce, a public library, police, fire, school.  I didn’t feel drawn to the place but I told myself to be open-minded.  Maybe the rental house would be lovely!

And it was.  All tile floors, all electric.  Roomy, clean, well-lit.  Just up against the eastern slope of the mountain surrounded by fields of Joshua trees.  Large empty garage in which David could paint.  The only thing that bothered me was the proliferation of aluminum foil, which he’d used to cover all the wooden shelves and doors, since many of his previous tenants were sensitive to wood.  I decided to give the place a try as the owner offered to let me stay for a night or a week.

We chatted for awhile.  I spent too much time in his house, which was not good for me.  I stopped in the public library – knew right away I can’t be inside that building – and had the same experience at the Dollar Store and the no-name supermarket.  What quality of life would this be?  Still, I figured the true test is how I sleep.

Fatigue again about 7 pm.  Kept myself doing odds and ends until 8:30.  No trouble falling asleep.  But since 1 am, I’ve been awake.  Turned off the heat and opened the window.  My left sinus swelled up badly.  So I finally got out of bed, and here I am, chirping away like a nightingale.  Chip chip chip.

My host in Dolan Springs told me that there was mining on the other side of the mountains (between Dolan Springs and Kingman) which had contaminated the water, but the well on this side is excellent.

Still, I am clearly reacting to something around here.  The combination of congestion and excitability (which I feel in my central and peripheral nervous system) is a sure sign of that.  Again, a mystery.  People say the air out here is good.  People say this is a great place to get away from electro-magnetic pollution.  Apparently, it’s not the place for me.

I’m sorry to move on.  I don’t have the vagabond mentality. I like to nest, organize my belonging, make a beautiful inside space and look out at a beautiful outside space.  So far only the rental 25 miles W of Tucson appealed to me visually, but the place was rather small for 2 people, and the sensitive owner has more restrictions that I think my husband could tolerate. 

So I guess that leaves me
    Still searching.

Monday, October 24, 2011

VIP, a very important peptide in CFS

You probably don’t have enough VIP.  98% of people with CFS don’t.  The MCS crowd hasn’t yet been testing, but when you learn what this neuropeptide does, you’ll probably surmise that low levels play a big role in that syndrome as well.

I’ve been thinking of going to Dr. Rea for allergy testing and environmental evaluation since I’m only about 3 hours from Dallas.  When I read that VIP, vaso-intestinal-peptide, plays a role in regulating sensitivity to chemicals and other inhalants, I started to wonder:  Should I just bumble along without knowing what I react to, continuing to use my intuition and somatic reactions as the most accurate barometer of safety?  And then continue working with the Shoemaker protocol until I can take VIP? 

It’s too soon to know the answer.  But I inform myself about VIP as I seek to understand my body and the way to restore it to optimal health.

In Ritchie Shoemaker’s 2011 IACFS paper, “Vasoactive intestinal polypeptide (VIP) lowers C4a and TGF beta-1, corrects refractory symptoms and normalizes abnormal biomarkers in patients with CFS”, the role of VIP is elaborated in detail.

He wrote:  VIP raises cAMP; lowers pulmonary artery (PASP) responses to exercise, blocks peripheral innate immune activation; reduces apoptosis of glial cells undergoing oxidative stress; raises VEGF; restores circadian rhythm; regulates response to olfactory stimuli in the suprachiasmatic nucleus; regulates dendritic calls; regulates Th17 function in autoimmunity; enhances IL-10 production; and modulates innate immunity.” 

Let’s put that into lay person’s terms. 
1.      Raises cAMP, short for cyclic Adenosine Mono Phosphate.  This molecule is one step away from ATP, the energy molecule, the one that mitochondria make in great abundance when they work properly.  All of us with fatiguing illnesses have low ATP, some from mitochondria damage, as Dr. Sarah Myhill has shown, some from interference in the citric acid cycle due to heavy metals (especially mercury and aluminum), some from poor metabolism of sugars that feed the citric acid cycle with pyruvate, some from a deficiency of oxygen transport into the mitochondria, etc.   From Wikipedia we read, “cAMP is… used for … transferring the effects of hormones like glucagon and adrenaline, which cannot pass through the cell membrane. It is involved in the activation of protein kinases and regulates the effects of adrenaline and glucagon. It also regulates the passage of calcium ions through ion channels.”   If you, like me, have issues with sugar metabolism (but not diabetes) and with adrenaline, you probably have low cAMP and would benefit from raising it.  In addition, cAMP affects cognitive function (not a big surprise since those brain cells of ours need to work properly.  By researchers have found a specific relationship between low cAMP and the cognitive deficits in age-related illnesses and ADHD.
2.      PASP (pulmonary artery response to exercise) may contribute to our exercise intolerance.  Shoemaker found that patients on VIP could tolerate more exercise.  It still remains to be seen if raising VIP eliminates the phenomenon Drs Snell and VanNess documented at Pacific Fatigue Lab, results unique to CFS in which repeating a sstress test within 24 hours showed markedly reduced capacity to produce energy and metabolize oxygen. http://aboutmecfs.org.violet.arvixe.com/News/PRJan09Pacific.aspx  It would also be valuable to know if the changes in receptor activity in CFS patients during exercise, documented by Drs. Kathleen and Alan Light, ceases to operate after normalization of VIP levels.  http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/
3.      Peripheral innate immune activation makes us itch, swell from bugbites and scratches, get extreme reactions to poison ivy.  When I was first diagnosed with fibromyalgia, the rheumatologist scratched me and looked at the red welt which formed; from that peripheral response, he labeled me with FMS.
  1. Reduces apoptosis of glial cells undergoing oxidative stress. Apoptosis is another way of saying that brain cells which have been damaged by free radicals commit suicide (a normal process to make way for new, healthy cells).  Yet when there is more death than replacement, cognitive function deteriorates.  It’s been said that we don’t notice cognitive deficiencies until we’ve lost about 70% of our brain cells.  Yikes!  Good to reduce this depletion of our brains by restoring optimal levels of VIP.  If the cells don’t commit suicide, they can be repaired and restored to optimal health with reduction in toxins and inflammation and increase in nutrients.
  2. Raises VEGF, a molecule which helps us build new blood vessels.  When too high, VEGF can support the growth of cancer.  Too low means less repair of damaged vessels, especially those tiny capillaries which feed every cell in our body.  Hence degeneration as tissues which are deprived of the blood bath bringing oxygen and nutrients hold onto the toxins that reduce optimal function.
  3. Restores circadian rhythm, the daily rhythm of hormones like cortisol, an important adrenal hormone which serves as a buffer against stress and inflammation.  Cortisol is highest in the early morning, drops to about half by noon, and then slowly declines in the evening until we are desirous of sleep.   Good to reverse an inverted or flat rhythm; the former keeps us up late at night, the latter leaves us in perpetual lethargy.  Disturbed adrenal circadian rhythms have been found in CFS-ME, as documented by data at Sabre Sciences, Inc, a lab which offers salivary testing of the circadian rhythm.  The majority of indexed studies on adrenal issues in this illness looked a total serum cortisol, finding no pattern other than disturbed regulation of the hypothalamic-pituitary-adrenal axis, while salivary hormone testing measures free cortisol inside the cells.  If cAMP is low, cortisol transfer into the cells will suffer.  Consequently, when I tested an 8 am serum cortisol and did an 8 am saliva sample at the same time, we found a very high normal serum level and a below normal salivary level.  My adrenals were working fine, but my cortisol was all bound by globulins as it couldn’t be transported into the cells which needed it.  No wonder I couldn’t tolerate taking Cortef (a cortisol replacement).
  4. Regulates response to olfactory stimuli in the suprachiastic nucleus, e.g. to smells and chemicals that we breath.   Right now, those of us with MCS are hyper-sensitive and get the kind of response to 1/10000th of a scent or odorless chemical that normals get to amounts 10,000 times greater than normal.  (Got these figures from Martin Pall, whose theory of MCS involves upregulation of OH and ONOO with NMDA receptor hyper-response.)
  5. Regulates dendritic cells, immune cells which present antigens to other immune cells so that these antigens can be eliminated.  Dendritic cells are found everywhere the body is in contact with the external environment: on the skin and in the inner lining of the nose, lungs, stomach and intestines. 
  6. Regulates Th17 function in autoimmunity, a type of T cell made my interleukin 17 which is found in excessive amounts in MS, psoriasis, rheumatoid arthritis, and other autoimmune disease.  They serve an important function at the mucosal barrier by producing cytokines which stimulate these cells to produce chemicals to fight candida, staph, and other microbes.  Without Th17 cells, there are more opportunistic infections.  I’ll personally be glad to get this working again, as I have had psoriasis ever since I relapsed in 1994, candida from before I got sick, and a tendency to pick up everything that comes along.
  7. Enhances IL-10, an important anti-inflammatory cytokine which plays a role in the gut-based immune system.
  8. Modulates innate immunity.  This is the part of the immune system that we are born with, our first line of defense against invading pathogens.  It is the part that goes wacky in CIRS, and presumably also in CFS. 

From a study of 1682 patients meeting the criteria for CFS, 98% had low VIP.  In comparison, fewer than 10% of controls have low VIP.  The range for VIP that Shoemaker uses is 23-63 pg/ml.  Shoemaker is working with VIP replacement, as a patented hormone replacement has been produced by Hopkinton Drug.  A talk he gave to other physicians used to be available at http://www.hcam.tv/videos/specials-and-unique-programs . It can still be accessed as streaming video on Shoemaker’s site at http://www.survivingmold.com/legal-resources/video

Excited?  You bet.  But beware of the fact that taking VIP right away doesn’t do any good.  As Shoemaker states repeatedly in his book, Surviving Mold, it’s crucial to eliminate environmental mold toxins, detoxify the mycotoxins in the body, and lower inflammation before you take VIP.  It might also be helpful to first balance some of the upstream regulatory hormones, such as ADH and cortisol.

After reading, I had to see what my own VIP levels was.  I was tested on March 11, 2011 for the first time, and my result, 23.5 pg/ml puts me in the low normal.  I don’t know from his IACFS paper whether this would be considered part of the 98% of low CFS patients or the 2% that is normal, but I suspect I would be considered normal, although barely.  Did my levels drop after 3 months of intermittent exposures to the toxic particles in my house that got stirred up as we cleaned and moved things? 

In the meantime, I’m not getting too far on the Shoemaker protocol.  Cholestyramine is step 3of a 12 step protocol, but I had to put it on hold.  I definitely feel better without it. There are other ways to detoxify biotoxins.  Perhaps following part of Rea's protocol (sauna, avoidance, desensitization) will work better for me.  But first I'll be meeting Dr. Janette Hope and trying CSM one more time.

Friday, October 21, 2011

Eye Candy

I wanted to take a thousand pictures over the last four days as I travelled from Dallas through Cache, Oklahoma, across the Texas panhandle, and through the mountains of New Mexico, but my camera was tucked away in my suitcase, which was buried in the tightly packed trunk.  So I have only pictures of the beautiful park in which I am currently spending my days:  a park in SW New Mexico known The City of Rocks.


Here’s how I got here:
My Dallas visit was aborted after the Marriott Residence Inn, which had promised me a green room, failed again to deliver close to the 3pm check-in time on Monday.  Angry and desperate for a place to sleep, I headed north on I-75 because it was the closest highway without construction near the hotel.  And construction-caused traffic jams in Dallas are ‘big’, like everything else in Texas, as I learned in the 25 minutes spent on a single exit ramp from I-635 in the misplaced hope that a personal visit to the Residence Inn would catapult action.  

About 45 minutes after running from Dallas, vistas of shopping malls turned to vistas of open pasture and undulating hills.  And they were hills, steep rounded hills, covered with green and yellow grasses and a few bushy trees.  When I paralleled the highway on a local road as I searched for my turn, the road hugged the hills like a roller coaster, climbing at grades of 9 -10% and dropping at the same steep rate.  The interstate running alongside smoothed out all the bumps, creating that seamless look of American uniformity which makes Walmart and Home Depot look the same in across the nation.

A half hour later, I turned onto I-35.  My plan was to go to Chickasaw National Recreation Area, just off I-35. where I would spend a day or two recovering and making plans to head west.  Divine had something else in mind, however, for as I crossed the border from Texas in Oklahoma, I jammed on the brakes and joined a long line of stopped cars.  On the right, was a long line of idling trucks.  Every now and then we inched forward, often because a pickup with 4WD had the good sense to cross the grassy divider and turn back into Texas.  My 2 WD sedan was not cut out for off-road travel, so I stayed in line while 5 miles ahead, police took their reports and ambulances rescued the bodies (survivors?) of an overturned semi blocking both lanes.  Unable to enjoy the delightful breezes on the prairie without the stench of diesel and gasoline, I rolled up my windows and took a car sauna.

Two hours later, I floored the accelerator and enjoyed going 75 mph for about 40 minutes.  Striking white cliffs and deciduous trees, some starting to turn color, ravished my eyes.  In the distance, black clouds and lightening bolts warned of dangers ahead.   Before long, I was driving through a thunderstorm with fierce winds arrived.  Passing the turn-off for Turner Falls (another lovely park I hope to see one day), I prayed the storm was local and small.  It was not.  And as it was pouring when I reached the exit for Chickasaw, I exited and headed West toward Cache, OK, with the intention of pulling into my old campsite and being welcomed ‘home’ by a familiar face. 

The route doesn’t look long on the map, but driving at sunset in rain with gusty winds, it turned into a very long drive.  Divine must have wanted me heading back there, for when I stopped at a filling station for directions, the person I asked said, “We’re heading there, just follow us.”  I did, and the rest of the drive went more quickly (helped by the fact that the car I was following liked to speed) with my leader taking me all the way to a familiar route 62.  I pulled into the station near the Wildlife Preserve just in time to receive the Monday night blessing from Guruji. 

No rain had reached this dry area, but the gusts of wind were fierce, at least 30 mph, perhaps more.  Dust and pebbles pelted the car windows.  I had organized my car so that, in an emergency, I could sleep on the backseat.  And that’s what I did!  I was so tired I didn’t care about stretching out my legs.  By morning, I felt well rested and had no sense of PEM (post-exertional malaise.)

The wind was still fierce the next morning, and the temperature had dropped into the ‘40’s and low ‘50’s.  It was easy to decide to head west.  But which way?

I chose the back roads, taking  OK 62 straight across the state of Oklahoma, where I enjoyed beautiful views of the mountains, golden pastures and green farmed fields.  Then I hit Texas.  The landscape turned flat.  I saw brown fields, yellow fields, and a few spots of green.  Cattle and horses.  More vast fields.  But soon I arrived at the foot of Palo Duro Canyon, the 2nd largest canyon in the US.  It runs 125 miles in length, NW to SE.  As I approached the SE corner, I enjoyed spectacular cliffs of red clay, and then finally, at a high point, a scenic view deep into the canyon.  The air was clean and fresh, but still very windy and cool.  Someday I will take the road up alongside the canyon and enjoy one spectacular view after another. This time, I needed to cover some miles and make it into New Mexico so that I could find a warmer, less windy place to sleep.

I didn’t realize southeastern New Mexico was so very industrial.  I arrived at Bottomless Lakes State Park, NM a couple of hours before sunset after driving through much commercial and industrial land.  It was a relief to find the park a considerable distance from houses and factories, even if it was SE of town, with the winds tending to come from the north and west.  The park is set among striking cliffs which rise above gently rolling hills covered with brush, and the altitude is slightly higher than the Roswell industrial valley.  Not surprisingly, the “bottomless lakes” had bottomed out and looked like oversized puddles.  From a distance they reflected the deep blue sky.  I took a site as far as possible from the lake at the highest point in the campground and pitched my tent on the concrete patio next to the picnic table.  Then I rushed back into Roswell for dinner and wifi and supermarket. 

As I returned to my campsite, my heart sank.  The factory was spewing sulfur-laden vapors into the air and it was floating towards the state park.  Light sparkled across the fields like a string of Christmas lights laying low to the ground.  I couldn’t figure out what the lights were for, but the risk was that it was something toxic.  What was I getting into?

Then I arrived at the campsite to find the raccoons had made a mess of my things.   Two sweaters had been unpacked from a zippered compartment in my suitcase, my toiletries were scattered everywhere, and the absorbent pads that I use for coffee enemas were strewn across the table, some chewed through, some nibbled at a corner.  How could I have been so careless!  I’d seen the open trashcans everywhere and assumed raccoons were not a problem here.  Perhaps the park deliberately leaves them open so that the critters can eat people’s garbage.  Whatever!  This coon must have sniffed out some fragrance in the pads, or my suitcase carried the residue of scent from a distant trip when I carried food in one of the pockets..  How disappointed the coons must have been to get a mouthful of absorbent cotton.  At least they didn’t gnaw holes in my sweaters.

I slept less well that night, every rustle sounding to me like raccoons hunting through my suitcase or my pots and pans – things I could have put back in the car but chose to leave out due to the late hour (past 10 pm) and the cold.  But thanks to the Trivedi blessing, I woke feeling well.  My nose was clear for once too! 

I headed further west, taking 380 from Roswell past a very cute town in the Capitan mountains, the first place I’ve seen in New Mexico that reminded me of little mountain hamlets in Europe.  From there, I headed towards Socorro and passed through an interesting area of lava rocks, where I stopped an enjoyed a fabulous view at the Valley of Fire Recreation Area.  The picnic tables are perched high on the side of a mountain which looks out over fields of lava rocks at distant peaks.  I met a couple from Snowflake, AZ, a locale which has an MCS community that I was planning to check out, but he told me that anyone with allergies to dust should keep away from Snowflake as they often have dust storms.  One less place to visit…. But also my options are narrowing down.

Others have written on “the Location effect” that they felt good in Socorro.   Consequently, I arrived there with great expectations, ready to turn west into the Gila National Forest and settle in.  But as I got off I-25, I was greeted by a smokestack belching black fumes into the air.  The Socorro valley has water, and therefore quite a bit of industry and farming.  The mountains of the Gila National Forest looked forebodingly high, and the wind whipped across my face blowing my hair into my eyes.  I made a U-turn and headed south, a Klondike ice cream bar in my hands.  Even before I’d finished the ice cream, I could feel my nose getting congested, and although this congestion lessened as I headed south into the higher temperatures of Southern New Mexico, it still hasn’t fully cleared up.

I saw some amazing scenery when I took Rt. 152 West to head into another part of the Gila National Forest, and steered through some pretty tight turns.  It was a slow ascent up to Emory Pass at 8228 feet.  If I’d read the map carefully and noticed that the high figures were the pass height, not the height of the surrounding peaks, I would never have thought about camping along that road.  I learned my lesson in Colorado:  don’t go into high elevations until you’ve had lots of time to adjust.

I tried to enjoy the mountain scenery.  There were evergreens and shrubs, a totally different look from the mountains East of I-25.  Both the foliage and shape of the hills reminded me much of the mountains in Tuscany where I lived for two years before I got sick.  However, the Italian Apennines and Chianti hills are punctuated with villas and villages, while the Gila mountains are completely uninhabited by humans. 

As the sun began to drop in the sky, creating a glare on my windshield that made it hard to see, I began to get nervous.  I would have to do the entire descent and then drive another half hour south to read City of Rocks State Park.  The State Park was my back-up location as I’d researched it in advance and knew they had electric and showers.  The challenge would be to get there before dark!  This was the hardest part of my trip so far!  It’s the first time I’ve felt anxious, but as I drove into that wilderness area, wondering when I’d get out, I found myself creating an inventory of what food I had.  Was it enough for 1 day, 2 days, 2 ½?  I reassured myself that I wouldn’t starve.  I didn’t have enough water to wash my hands and my dishes, but I did have enough to drink.  Every once in a while I’d remind myself of the beautiful scenery, then focus on the road again as it curved through 10 mph and 15 mph switchbacks.  When I came down the hillside and saw my first house I felt such a sense of joy and relief!  Civilization.  How wonderful.  Lights and telephones and modern conveniences.

I made it to City of Rocks in time to enjoy a magnificent sunset and a cold dinner.  I set my sleeping pad on a concrete pad, spread my sleeping bag over it, and tried to go to sleep.  To add to the tension of the day, an abusive man in a pop-up camper at the end of the RV park was yelling at his woman and cursing for over 2 hours.  I despaired of ever sleeping, but he did eventually shut his foul mouth and I dozed off under a dark, starry sky.

When I woke, I was congested and blowing and nearly incapacitated with PEM.  I rested during the day as much as I could, and felt a lot better in the evening.  But as the temperature drops, I find myself getting congested again. 

Allergic to the night?  Huh?

I’ve been reading in Dr. Wm Rea’s book about indoor and outdoor toxicity.  At night, the cooler air is denser.  Pollutants settle.  In afternoon, the toxic level is lowest.  Hence, my daily cycle of feeling clearest in the afternoon and getting more and more congested as the night progresses fits perfectly with the total toxic load of the outside air.  At night the wind also dies down around here.

What still seems strange to me is waking free of symptoms in the toxic air of Bottomless Lakes State Park.  Are natural pollutants such as terpenes from evergreens worse for me than industrial pollutants?  

Is this payback for 4 days of indulging in candy (eye candy) with all its stress?  

Am  I witnessing the pattern of masking and unmasking?

Masking is what happens as the body gets more toxic.  It ceases to react to toxins and pollutants.  Unmasking is what happens as the body releases toxins.  It becomes instantly reactive to pollutants.

As much as I miss wifi around here (I’ll drive 35-40 minutes to find a place in Silver City), I think it makes sense to stay for awhile here in the desert to see if I start to improve.  I had a lot of toxicity in the past week, with the mold, the driving, the industry, the lack of sleep, the stress, and the inadequate nutrition as I moved from one locale to another.  While I’m impatient to get into the Tucson area and check out two possible ‘safe for MCS’ rentals, I know I’ll get a more accurate sniff test if I’m in a less reactive state. 

Monday, October 17, 2011

Mold Hit

I was really stupid.  But my lax act was also due to the impact of mold on my brain.

Let me explain.

It rained.  I had a plastic tarp under my tent, separating it from the asphalt driveway.  After a rain, I normally take down the tent, hang the tarp on the line, and air out the bottom of the tent in the sun.  I say “I normally”, but truthfully, my role has been to remind David to do this. And David wasn’t here.

Alas, the rain continued for two days.  The following day was gray, blustery, and threatening.  I told myself I’d dry out the tent first thing Tuesday morning, but the dew was thick and the air was damp.  I chose instead to go out for breakfast and take care of my calls and errands.  I hoped to be back my late morning.

Alas, there were complications.  I couldn’t find a place for breakfast.  I suddenly had long phone calls because potential buyers made a good bit on the house.  I started to feel anxious about what he’d sell, where we’d store the rest of our stuff, where we would live, whether we should get a trailer specially outfitted for MCS or if I could find a safe house someplace.  So many decisions.  So little information!

I came back to the camp and looked at the sun beating down on the tent, on the plastic, on the black asphalt.  I felt tired.  I felt lazy.  I was hungry.  I couldn’t bear to spend however long it would take to take down the tent and then, within a few hours, have to set it up again.  I ate, rested, and it was 4 pm – too late to dry the tent out in the sun and set it up before dark.

By the next day, mold had started to grow on the underside of the plastic.  Water + plastic + 3 days = mold.

I was still in a dither the next day about the house sale, and still spent more time driving into town to get wifi and cell signal than my body could handle.  I got into the tent to sleep, lay my head down, and within a minute, my sinuses ached, my nose was stuffed and I couldn’t breathe.  I did the neti pot again, nebulized glutathione, and managed to get to sleep at some wee hour of the night.

Mold, I have discovered, affects my brain before it affects my sinuses.  So the dither I was in, the state of confusion (what to do, when, how, where, yes, no)—everything I chalked up to the house sale -- was exacerbated by the mold’s effect on my brain.  And that led me the following morning to totally forget about the wet plastic and my resolve.  Instead, I came up with several other theories:  the group of 100 young campers from Dallas who were upwind had brought in moldy tents; the newly arrived RV upwind was moldy; the whiff of mold I’d gotten when I started to take a walk in the woods (before turning around) was enough to trigger a reaction 4 hours later; my sleeping bag was making me sick.  I posted on Facebook about how hard it was to know the source of a hit.

Confusion mounted in my sleep-deprived state.  On Tuesday I had e-mailed Dr. Rea’s office thinking I might get some answers if I went down to Dallas and tried to stay in one of the environmentally-safe MCS rooms he rents.  I want to be able to live indoors again, with clean feat, plumbing, and electric lights.  But I still hadn’t heard back. 

So on Thursday, I called Dr. Johnson’s office (Dr. Johnson advertizes in the chemical injury network newsletter, Our Toxic Times.  He worked with Dr. Rea for many years before going out on his own.  I asked about MCS rooms, and they sent me to the Marriiot’s Residence Inn.  The room didn’t have all of the environmentally safe precautions Dr. Rea’s assistant had described to me, but I thought I had remembered incorrectly.  And in the state of a moldie turned country bumpkin, it never occurred to me that there was more than one Residence Inn in Dallas (I think there are 8 of them!).  And so I booked myself a ‘green’ room for a week and then telephoned Dr. Rea’s office to make an appointment there.  I had two Dr.’s appointments in Dallas and a room.  I was set to go.  I would leave my tent at the campsite, take only the essentials, and if I couldn’t tolerate the room, I’d return the next day.  That was my wonderful plan.

Although I slept well Thursday night (having been deprived of sleep the previous night), all the issues of sinus congestion, memory lapses and mental confusion increased.  I had a Master Blessing Friday morning and felt fabulous most of the day.  I wrote up my questions for the Doctors and wrote up a one page summary of my recent labs.  I took the longest walk I’ve taken in 3 years: a 20 minute brisk walk.  I got into the tent just after dark and read lying down.  By the time I was ready to turn off the light, I had a swollen gland and knew I was in trouble.

Hard pounding.  Jittery.  Restless. 

I lay in the back seat of the car wondering why I was conducting this experiment.  Was it so important that I be able to sleep in the car (in a fix) when I had this comfortable sleeping pad lying on the floor of my tent just a few yards away?  I got up around midnight and went into the tent.

Instant congestion.  Unable to breathe.  Mucous production.  I lay still and breathed through my mouth.  I sat up.  My nose cleared a bit.  I lay down and got more congested. 

By morning I’d figured out the source of mold was right underneath the tent.  I meditated in my car and slept for an hour at the cusp of dawn.  As soon as daylight made activity possible, I took down the tent, got a neighbor to remove the wet plastic, and aired out the tent.  The tent bottom didn’t look bad.  There were a few spots of dirt but not many.  It might have mycotoxins in it now making it unsafe.  I hope not.  It’s the only protection from the elements I have.  I spent the rest of the day cleaning everything thoroughly, packing up the car for my journey, and blowing my nose which was running like a dripping faucet, unstoppable.

My last night at the nature preserve was wonderful. I slept under the stars in my sleeping bag and a Walrus Bug Hut (mesh netting to keep the mosquitos from biting around sleeping bag and head).  I woke with an almost clear nose and started on my journey. By the time I arrived in Dallas at the hotel, my nose was clear.

Enter more complications.  The Residence Inn had my confirmation number but no ‘green’ room booked for me. The only good thing was that the desk clerk didn’t blink an eye when I walked in wearing my respirator!  They are used to chemically-sensitive people because their 4 green rooms are often occupied by Dr. Johnson’s patients. 

Dr. Rea’s patients tend to go to a difference Residence Inn in a different section of Dallas.  This I learned from voicemail messages from Dr. Rea’s office that I’d forgotten to check both Friday and Saturday. Another memory lapse.  Of course there were no vacancies at the other place.   But there were environmentally safe condos about 5 miles from Rea’s office.  So I called there.  And although there were still no vacancies (I had checked back on Tuesday or Thursday, I no longer remember,) the owner graciously offered to let me crash in the sauna room or storeroom.

That’s where I am now.  I knew the moment I walked into the space that I wouldn’t tolerate it.  I spent a few hours outside in the garden enjoying the use of free wifi and talking to patients of Rea and Johnson.  I met many people who have made great progress under these Dr’s care.  Some are still sick, but no longer incapacitated and close to death.  Others have flown the coup and gone on to live productive lives.  I learned that Johnson is perennially late and that Rea fits everyone into the same program.

But the most important thing I learned is this:  I can’t tolerate the air in Dallas, nor the indoor air at these Regina Caeli Environmental condos.  I slept fitfully for a few hours,  got congested again (none of my own bedding!) and at 4:30, tried to sleep in the car.   But I wasn’t tired!  That’s a sign my system in on high alert doing what it does to reduce inflammation by raising cortisol.

So I’ll be moving on.  Where to?  Camping in a remote area.   I’m going online now to look for places to camp in West Texas.  I’d like to visit Guadalupe Mountain.  Or I’ll go up towards Amarillo and spend a night or two at the beautiful Palo Duro Canyon.  I probably won’t have wifi or cell signal.  Right now, sleep sounds like a much better alternative.