Tuesday, November 20, 2012

Progress or plateau?

One of the most challenging features of an NEID Ineuro endocrine immune disease) is the ups and downs.  The ups excite us:  I'm finally getting results! we think as we explore a new protocol.  We tell all our friends:  You have to try X. It's really helping me but inevitably, a down comes along.  There's a change of weather, an environmental exposure, a used up supplement, an emotional stress and BAMM! we feel as if we've lost ground.  But have we really?

At times, it seems as though nothing is happening. We're at an okay place, better than before, but not where we want to be and know that we can be. We hang out here for awhile, hoping for a chance, plugging away at the same protocols that brought us to the improved level. After a while, we start asking if perhaps, we should try something new.... It's scary.  A new thing can cause us to lose all our gains.  On the other hand, there's that pie in the sky and we can't fly up to enjoy it.

I've been in both places many times.  I know  how confusing it can be.  Sometimes it takes outside confirmation; sometimes we can go inside and find the answers that are right for us.

This past Friday, I saw Dr. Janette Hope, the Environmental Medicine specialist I consulted last November.  Hope had environmental/mold illness, which led her to leave her busy practice, learn about environmental medicine and holistic healing approaches, and once recovered, start a new, small practice specializing in the problems from which she healed.

I was a bit leery when I first talked to her on the phone.  "I have ME-CFS as well as mold illness," I said.

"All of my patients have CFS," she replied.

Shit, another doc with no clue to what I'm going through, who thinks fatigue is the same as ME-CFS, I thought to myself.  But I still drove all the way to Santa Barbara because I wanted to have a doctor with whom I could consult by e-mail and phone, one would would return calls, treat me like a human being, and respond to my concerns with information and compassion.

I was arrogant enough to think I knew what to do.  I'd read Shoemaker's Surviving Mold.  I'd read online and listened to talks and studied functional medicine and nutritional supplements and a zillion special diets for healing.  I'd met Lisa Petrision, the doyenne of extreme avoidance, and I'd been reading post from her and a small group of others whose ME-CFS (or whatever they called it) disappeared rapidly when they got into a good environment.  I was seeking that Shangri-La and had found it living outdoors in the California Mojave Desert.  Fortunately, I was still a tiny bit open to Dr. Hope's suggestions.

Dr. Hope had me do several things that I wouldn't have considered on my own.  She had me use a nasal fungicide called Amphotericin-B which she ordered from a compounding pharmacy to avoid preservative and other nasty additives.  I came to her with the films from a CT-scan and the ENT report recommending surgery for multiple blockages.

She also emphasized the importance of getting glutathione into the brain through nasal drops and the importance of nebulizing glutathione.  Like Dr. Bill Rea, founder of the Dallas Environmental Health Center and of the field of environmental health, Hope believes that toxicity is one of the causes of our illness which can be addressed through detox protocols.  Since glutathione supports the detox pathway initiated  by methylation, a pathway in which I am deficient, I followed her advice.  Dr. Grace Ziem also uses nebulizing glutathione for her patients with MCS.

She also had me include bentonite (Sonne 7) as a binder for toxins that can be pulled out through the bowel, activated charcoal, and CSM from a compounding pharmacy without the artificial coloring, flavor and aluminum.(Yes, there is aluminum in the standard cholestyramine).

Before I saw her last week, I was wavering between feeling certain I was greatly improved, fearing that I hadn't made any progress, and thinking that I was at a plateau and maybe it was time to consider a trial of Gc-MAF.  Hope went through the list of symptoms I reported last year when I was less than two months into extreme avoidance and just beginning to tolerate CSM.  I was amazed and happy that I no longer had any of those symptoms, unless I had an exposure, with one exception: my brain is still a disaster in memory, word-finding, facial recognition, and executive functioning. An ENT confirmed with a CT-scan that my sinuses were now completely recovered, without surgery!  (And like most mainstream surgeons, he tried to convince me that I'd never had a real problem, that the first doctor had been wrong.  I let it go now.)

I left Dr. Hope feeling happy with my progress and determined to do and even better job this year of being compliant, of not putting off the nebulizing until I'm tired and then procrastinating until tomorrow, of doing exercise and sauna as soon as I get situated.

Housing is still the greatest obstacle, as it is for the majority of people with environmental illness. I'm nearly symptom free living outside in the Mojave Desert, but put me in a building, and I've got a long list of symptoms.

The greatest miracles of my current recovery are that I now have two places that I can tolerate:  one is a yellow all aluminum trailer from VRV (it really has other things in it like vinyl walls, foam insulation, and a formica type counter) but they are minimal enough and outgassed enough in my 2010 unit that they don't normally smell).  The second miracle is a house n the Santa Rosa mountains south of the Palm Springs area, rather than a tent.  It is a step up from a living in a tent and more than twice as expensive.   It is unheated and has no insulation. My husband calls it a submarine with screens.  Unlike my tent, it doesn't warm up during the day when the sun shines and at a 3000 ft elevation, it can get uncomfortably cold.  But it is the first house I have been able to sleep in for over a year. on.

I love the land that it sits on, with panoramic views of the Coachella Valley and huge rock outcroppings. and desert landscaping  All of the other houses in the community are similar -- no mold-infested humic soil from daily irrigation.  No pesticide laden golf courses!  No noisy, stinky car traffic.  We have only two known pollutants - the dust from the dirt roads, and the chemicals used to treat the well water, which without treatment, contains radioactive uranium.  If I were ever lucky enough (e.g. rich enough) to buy and build in this community, a full house reverse osmosis treatment system would be mandatory.

We're leaving this wonderful place on December 1.  The main house on the property, is moldy.  The property contains three buildings with bedrooms, a chapel and a blacksmith shop. The guest house, which I set up as my office, is also moldy.  As a consequence, my life is restricted to the one room casita, and the great outdoors.  At 3000 ft, the great outdoors has been considerably less inviting than it was last winter down in Desert hot springs.  I'm in survival mode much of the time to keep warm, and to get nourishment.

The refrigerator and stove sit in the moldy main house.  To go in there, I put on an N-95 mask with charcoal filter, a hat, and an old running suit that covers me from neck to ankles.  I don't bring any of those clothes or shoes into my sleeping area.  Even with these precautions, if I stay more than 15 minutes I get the disabling symptom of orthostatic intolerance.  Taking a shower doesn't help -- it just wastes time and makes a lot of laundry.  Nebulizing glutathione and using the neti pot does.

I've been managing in survival mode, waiting for the day when I can tolerate a house with heat.  We decided to move out because breathing spores of Stachybotyrus, Claedosporium, Aureobasilium, and
Aspergillus niger, are not helping me move further ahead.

I don't know where we are going.  Some little house or apartment sitting next to an irrigated and fumigated gold course?  A rectangle of gravelly sand at the RV park where I tent camped last year?  a trial of southern Arizona?  or a trip with my mother to some very hot Caribbean island?  The latter, of course, sounds best -- especially as I sit here with freezing cold feet -- but the reality of renting any place sight unseen is DANGEROUS when you are super sensitive to tiny amounts of mold, bacteria, viruses, dust, and chemicals.

I'm waiting, meditating, and praying for Divine Guidance.  I don't get lots of information in advance.  I usually know what I need to know at the last minute, or a few minutes later when I walk into a building and start to feel sick.

But my freedom has increased by leaps and bounds because of my I-Can-Breathe honeycomb mask.  I stayed inside a slightly bad hotel ballroom for two days wearing my lovely mask and managed to avoid symptoms.  Here I am at the retreat in the San Diego Town and Country Resort and Hotel in my lovely get-up. It was cold in the room so I wore a hat and pulled it down over my eyes to block the glare of the stage lights.
Next mask I order is in black, to match the hat and prepare me for my new career as a burglar!