Tuesday, August 9, 2011

Oxygen Adventures

Lily pond at Anchorage Farm, Pine, Colorado

Do you have a shortage of oxygen?  Dr. Paul Cheney has argued that everyone with CFS has symptoms similar to high altitude sickness, because we have insufficient oxygen available for normal body functions.  Dr. Ritchie Shoemaker's treatment protocol for CIRS involves taking EPO, a medicine that increases the ability of the body to process oxygen.  With diminished oxygen, cellular functions diminish and eventually shut down. 

Picnic area near Pine CO
Our plan was to camp at about 6000 feet in a Colorado state park not far from Pine.  But as we drove from Denver out Rt. 285 into higher elevations, I felt better.  My nose cleared and the symptoms of allergy like running nose and tearing eyes stopped.  We reached the town of Pine Junction at 8000 feet and turned down the mountain side towards Pine.  As we descended, my nose filled with fluid. So we stopped for lunch ina beatiful picnic area beside a burbling brook.

 After lunch we decided to camp at higher altitude.
8000 feet might have been okay.  But as we drove along 285, we didn't see anything.  We followed the road to the Guanella Pass where two camping areas were marked. The lower camping area was closed for construction and up we went to Burning Bear, just before Guanella Pass.  An alpine meadow stretched out between rows of peaks, the wind whipping across and cooling the sun-heated air.  The campground was tucked into the western side of a mountain, leaving us exposed to wind and sun.  We set up our tent, hauled cooking gear out to the picnic table.

I felt great.  I was surprised at how much energy I had.  I knew to be careful at c. 10,000 feet, especially since we'd been at sea level two days earlier, but I still walked back and forth from truck to picnic table, from picnic table to bathroom, from bathroom to truck.  I sat quietly and chopped onions.  Back to the truck.  Sat while I grated cheese.  Back to the truck.  The dust on my feet and my flip flops started really annoying.  My jacket went on when the sun passed behind a cloud and came off when the sun came out.  For the past four days I couldn't remember where I had stashed anything (hence I couldn't take or upload pictures).  My lack of ability to remember the simplest things at Burning Bear didn't seem like an ominous sign.

At 5:30 we at our dinner of onion soup.  At 6, I was suddenly too tired to walk to the bathroom.  I lay down and felt my heart rate accelerating.  My mouth felt dry.  I drank more water, but started to get a headache, and it seemed that the more I drank, the drier my mouth felt.  I sat up for awhile to set up our bed, brush my teeth and prepare for bed.  As the sun set and the temperature dropped, I curled up under 3 " of down loft and tried to relax away the worsening headache, queasiness and urge to move my bowels (it was too cold and I was too tired to walk to the bathrooms.)  David came into bed just as the sun fell behind the summit of a western peak.  It was not quite 8 pm.

"You'll feel better if you sleep," he assured me.  Yet visions of oxygen danced in my head.  I felt a sudden nostalgia for the nasal oxygen Dr. Majid Ali had me try back in 2005.  At the time, I hadn't felt any better breathing it --there was plenty of oxygen in rural Ohio.  Now I could smell it and taste it.  My headache became a vice around my temples.  My queasiness turned into an urge to expel the contents of my gastrointestinal tract. 

"We have to get me to a lower elevation.  Let's put the bedding in the car, move our suitcases and things into the tent.  We'll drive down the mountain and sleep in the truck."

"The road is paved heading north towards Georgetown," the campsite attendant told us, and that seemed infinitely better than the bumpy dirt road under construction we'd ascended.  What he didn't tell us what that it was twice as long, and that we had to go up another 1000 or 1500 feet before descending in a series of tight switchbacks.  Our truck stopped at few times on the descent to leave mementos of my recent meals along the roadside.  The neon signs of a motor Inn in Georgetown never looked more welcoming.  With toilet and clean hands, I went back out to the truck and finally had a cell phone signal to call 911.

Fifteen minutes later, on the advice of the medics, I was hooked up to an oxygen tank and a saline IV.  Oh sweet, sweet oxygen.  I felt my breathing relas, my headache dissipated.  But the stress, or the deprivation, left me with strange muscular tremors in my leg muscles.

The ambulance raced the 47.2 miles to the nearest Denver hospital while David struggled to follow them at 80 mph, praying no state trooper would decide to pull him over.  At the hospital, the ER doctor gave me another IV, more oxygen, and turned off the lights so I could sleep.   At 3 A.M. I was discharged and joined David in the hospital ER parking lot.  We awoke to a strong sun and a gaggle of hispanic construction workers pointing at the odd sight of a gray-haired couple climbing out of the back of a pick-up truck.

Now I'm back at 8000 feet, sitting in the garden of a bed and breakfast where we'll be staying from Thursday to Sunday while David makes the ascent towards Gunnison Pass to rescue our tent and clothing.  I'd love to be lower -- say 6000 feet -- as the air up here feels a bit thin, and I'm not interested in repeating last night's experience.  Fortunately, Pine is down in the valley, with campsites beside the Platt river and some small lakes, all at about 6000 feet.  How wonderfully inviting!

My friend Robin's ENT, a specialist in fungal sinusitis, told her that to reduce exposure to fungal spores, mycotoxins, and fungal DNA fragments which trigger the immune response that sends out memory T cells into a tailspin, our inflammatory cytokines skyward, and our compensatory immune regulation crashing, she needs to explore one of the following environments:
  1. right on the beach --not a block away
  2. high elevation
  3. desert
Right on the beach is not an option for someone with less than a million to spend on housing.  Besides, beach properties are prone to hurricanes, and hurricanes bring water damage.  High elevation is a harsh climate, and one that taxes our already-comprimised ability to deliver oxygen to our cells and transport it through the mitochondria to produce ATP.  So it looks as if I am left with the desert as the only option for a new place to live.  Or perhaps, a dry desert-like climate at a moderately high elevation will work out. 

In the meantime, a few more days of sneezing and wheezing in this splendid Colorado scenery.  With rest, your supportive prayers and the grace of the divine, my over-sensitive immune system will calm down and I'll stop reacting to the grass and tree pollens around here.  I know that my system was triggered into a state of hypersensitivity through exposures to dust, mold, cats, dogs and cleaning solutions in the Kansas City Q Hotel, my cousin's Denver suburban house, and my husband's truck. I used to have terrible ragweed allergies when I visiting my parents in West Virginia because their country house was full of mold.  The same ragweed in Ohio didn't bother me if I was rested and in a cleaner environment.

I am starting to see why living in a trailer makes sense to many people with MCS and CIRS.  Never before was I aware to this degree of how many environmental triggers contribute to the condition known as CFS.  In some ways, despite the unpleasantness of my recent adventures, I am learning first hand exactly what my body wants and needs to restore itself to good health.  Lisa's beatifully written story, Losing Everything to Gain Everything, inspires me to move forward courageously with inner guidance tempered by medical advice.

Thanks for your prayers.  It's a disapppointment that I don't feel fabulous out here, just as it was a disappointment that Aerosolver didn't transform my house into a safe haven. But I go on with the certainty that I will find what I am seeking.

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