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!







Thursday, October 4, 2012

Laundry issues


  

I haven’t been motivated to write. Part of the reason is because I committed to doing a paper (that 's academic jargon for an essay) for an anthology of essays from a conference that I was invited to attend last year, but  had to decline because the mold illness made travel overseas impossible. I sketched out my ideas before I admitted to myself that I wouldn’t be able to take advantage of a free trip to Florence.  Sigh!  How I was tempted!  But what good would it do me to be wired and incoherent or be dozing off and inarticulate for two long days?  Now if they had held it outside, say in the ampitheater in the nearby town of Fiesole, maybe I could have attended.  But at the time, I had no idea I’d do well outside.  Besides, the ampitheater is now a museum, having been built by the Etruscans several centuries before Rome ruled the Mediterranean.

Today I sent that paper off to the editor.  It was a loooooong haul--nine months, long enough to gestate a child.  I started writing it back in the winter.  I remember sitting out on the lanai in Hawaii every morning taking advantage of the shade; then spending the afternoon going to the beach and looking for better lodging.  I got to work on it in bits and starts over the next three months.  In retrospect, it’s amazing that I got a draft in by the July deadline with all the moving around and health crises I went through.  

The real challenge started when I had to revise it thanks to a corrupted file (the most recent version, of course), the lack of a printer, my contact lenses deteriorating so that I can only see out of one corner and have to turn my head like a robin to read, my glasses getting totally crazed – all this deterioration from the summer heat in the desert!  Nothing can live here but a few cacti. 

I used to batt these essays out in a few weeks in between teaching and meetings and advising.  How this illness has changed my brain!  It is most discouraging.  I’d like to announce that my brain is getting better, but there really are no signs that this is so.  Memory is an F.  Problem-solving a C minus.  Spatial awareness and visual recognition F.  Verbal skills A minus, unless oral, in which case it drops to a B minus.

Lots of other things have changed as a result of a year of avoidance.  The good news is that my sinuses are now completely clear and normal.  

In September of 2011, as I started on my journey across the country, my sinuses were moderately congested and the ENT recommended surgery to open them up.  I had a gut feeling that there was a fungal infection in them, although I had nasal swabs done 2 or 3 times that always turned out normal, but the ENT said he couldn’t tell until he cut and cultured.  Nope.  No cutting for me.  I’d see if they improved in a dry climate, I said.

Dr. Hope, who is treating me for mold illness, and who knows the work of Donald Dennis at www.chronicsinusitis.com, thought there was probably a fungal infection inside there dumping mycotoxins in to my bloodstream and keeping me sick.  She put me on an antifungal nasal spray.  I also followed Dennis’ advice to use a neti pot or nasal rinse up to 4x a day.  The nasal rinse clears out any mold spores which you breathe in the air, hopefully before the immune system mounts a reaction to them.  The nasal rinses definitely helped me to remove buggers and dust and to alleviate the stress to my nasal membranes of very dry air.

IPerhaps I am now less reactive.  I like to think this is the case but really don't know for sure as there is no standard against which to measure myself.  Maybe I am getting smarter at avoiding moldy places, or perhaps just lucky.  I managed to sleep one night in a hotel room but woke with leg cramps, which Shoemaker says is a sign of split compliment from an immune response to mold.  (I spent the second night in Phoenix sleeping in my car)

TNow I'm not far from Palm Springs, and I've felt pretty good around here.  I've even been able to go into many stores without dire consequences.

And only two sleepless, reactive nights in the 2 1/2 weeks since we moved it.  The first time was to our newest set of sheets which my husband had washed in the washing machine here.  I suspected the washer was not to be trusted.  It was a front loader, and it had sat unused for over a year.  Front loaders are notorious for getting moldy because the water doesn’t fully drain.  He ran the washer empty a few times empty, then threw in the sheets, towels, you name it.  I don't know why I didn’t object vehemently.  I forget at times to be vigilant. When we put the sheets on the bed, we discovered they were contaminated with mycotoxins, and by midnight, I was stripping the bed and sleeping on top of a towel.

The next day I went into TJ Maxx and bought a new set of sheets on clearance. They were high quality, 550 count cotton, but they made me sicker than the old ones..  I don’t know if they got contaminated with mycotoxins in the store or in a warehouse, or if I was reacting to some chemical used to treat them.  Whichever it was, trying to sleep on them left me with a splitting headache and a slight queasiness that got worse when I nebulized glutathione.  I felt wasted all day.

Now we have quite a collection of sheets!  Two sets of new sheets gotcontaminated earlier this summer.  The first new set purchased shortly after David arrived got ruined a few weeks later when he brought some awful toxin back from the San Francisco Bay area.  I washed them out by hand the next day but couldn’t get the stuff out, washed them again in a good machine but still couldn’t tolerate them.  They’ve been travelling in the back of my trunk in a black garbage bag.  Can’t bear to throw them out when they were only used for a few weeks.  

The sheets that replaced them lasted through all of July and August.  When we left the hotel outside of Boulder where we stayed while house/apartment hunting, David washed them in the hotel laundry.  I haven’t been able to tolerate them since. We had to pick up some inexpensive polyester sheets at the only store in a tiny Nevada town in Navajo country.  They also got ruined in the washer here.

A friend sent me a link to a laundry additive called EC3.  According to some tests run at RealTime Labs, the EC3 got rid of mycotoxins.  The research wasn’t impressive, and there are no data –just a letter from the lab stating the absence of mycotoxins, with no data on what was found in the clothing or linens before treating.  However, I thought it was worth a try.

First we washed the sheets contaminated in Boulder and from the SF Bay visit.  Alas, although we added EC3, it wasn’t enough to offset the mycotoxins/mold spores from the washer in this house.  Next, after reacting violently tothe new TJ Maxx sheets, I took one set of those sheets and soaked them for 20 hours in EC3 in a container set out in the sun.  Then I hung them to dry in the sun.

To minimize confusion, I took all the blankets and pillows to the Laundromat at Sam’s, where I had washed clothes without a problem for nearly 9 months.  We made up a bed with our camping mats and freshly cleaned bedding in the trailer, and lowered the back ramp.  It was the closest thing to sleeping outdoors, and I didn’t react to the sheets at all!  What a relief!  The 2nd night, repeating the same, I slept a little less well, but I had complicated things by going into town to the ENT, which meant going into a new building and staying indoors there for 2 hours. Tonight will be the first inside the house.

My advice now on the 'correct' way to go about this:  if you suspect a washer is bad, but have a particular reason to want to use it (as for example, you are paying rent for a place and that washer is in it), wash only one item, ideally something you don't mind throwing out.  Take the washed item into your bedroom and see if you react.  Of course, with fear and trepidation, how can you do a fair test?  You can have someone else wash two pillowcases, one by hand and one in the machine, and not tell you which is which. Then you can test out both pillowcases to see if you react.  If the washer seems to have potential after this,don't assume that it is!  Wash another few items and keep testing until you are absolutely sure it is not going to ruin your stuff.

Now about the house....   I’ll save it for another blog.  I can only say that I’m happy to have four walls and a roof over me, the property is magnificent and nourishes my spirit, and the rent is way too high for our budget, but desperation leads to strange behaviors and I was determined not to spend another year wandering from place to place in a tent.  It’s not perfect, but it’s working so far.

Monday, July 30, 2012

Update


It's been a long time since I've posted, and since several people have written to me asking where I am and how I am doing, I decided it was time for a post.

In many ways, the past two months have been most difficult.  I headed from Desert Hot Springs to Santa Fe, where I stayed in the yard of another woman with similar sensitivity to mold and CFS-like symptoms from exposure.  I enjoyed using her kitchen and bathroom, but I was cold in the evenings.  I came down with a cold after a few days, which got me to rest as I acclimated to the high elevation (7200 ft).  By the second week, I was out taking short hikes in the woods, gradually increasing the time until at the end of my stay, I was able to walk for more than 45 minutes, much of it uphill.

Santa Fe turned out to have many buildings that knocked me out more severely than anything I'd experienced recently.  It was strange, as I 'd go into a store and not notice much of anything but by the time I was ready to leave, I'd have some ymptoms.  I'd come home, shower, change my clothes, but it didn't seem to make much difference.  Whatever the toxins, they were in my system love the architecture and the size and the landscape.  It got to the point where I didn't want to go anywhere.  The exception was Ten Thousand Waves where I found the water clean and the air good, and I always felt better after leaving that place. The downside of hiking was that I sprained the supinators on my right foot the very last night, and hobbled around for a month waiting for it to heal.

We sold our house, which apparently is something very close to a miracle in today's market.  I felt quite fortunate, even though we lost money on it, but at least we no longer have the responsibility for its upkeep.  David worked hard to get everything ready to show the house, and then worked even harder getting everything packed up to go into storage.  He drove a UHaul out to Albuquerque towards the middle of June.  We met up in Albuquerque.

It's been wonderful to have David back in my life, but it's been hard on my health.  The house in Ohio contained mold and mycotoxins to which I had developed extreme sensitivity.  Although I've been able to keep my car and my clothing (which I washed several times in Borax and hung out in the sun), I found myself reacting to things David had brought with him.  It was terribly confusing because I was in a new place (the Bernalillo KOA for the first 3 days, then Cochiti Lake for the next 8) where the air was not particularly good, we went to hear a Buddhist monk speak the first night in a building I had never been inside, and he had a hard time remembering to get everything he needed out of his truck before he showered and changed.

So we made lots and lots of mistakes, and I got very ill. It got so bad one day that I was lying around in the tent all day feeling sorry for myself and wondering why in the Hell I was out camping when I could have been home in Ohio feeling just as sick with a more comforts.  That very day David had removed two foam cushions from his truck, washed the upholstered covers, and hung them out to dry.  When I got up for a drink I bumped into the covers, smelled mold, swooned, and went back into my tent/cave.   Thankfully, he ended up taking them to the dumpster and then cleaning up, but the whole campsite at that point was so toxic to me that I had to leave the tent in the night and sleep out in the driveway, as far as possible from the area where the cushions had been.

After that, we made lots of other mistakes, but we finally figured out how to live together.  We did most of our integrating at California Hot Springs, a neat old resort on the edge of Sequoia National Park.  We were usually the only people in their small RV park, which gave us the privacy we needed, and the hot springs provided great hot water and frequent opportunities to bathe and detox.  We griped about the lack of wifi (only on 9-5, inadequate bandwidth for anything but e-mail) and the total lack of telephone service, but the weather was pleasant.  I've been able to tolerate David's clothing and shoes, but still have questions about his vehicle. Testing things had to stop when we reached the 14 day limit at the park.

During our stay, we did some traveling in Sequoia National Park and, of course, took pictures of the huge, amazing trees.  I climbed Moro rock, some 370 steps, but that was about all the hiking I felt like doing.  I was still zonked from the reactions I had the first two weeks.




My reactivity seems worse than ever.  Thankfully, David does all the errands, but one day I forgot and ran into CVS to pick up something.  Boom!  I was floored for the rest of the day, even though I was in there less than 2 minutes and I followed the advice of Lisa Petrison to pour water of my head, wash my face, and change my shirt.  It seems that for me, once a reaction starts, it has to follow its course.  I can help it be milder by removing vestiges of the toxin from my person, but the inflammatory reaction has already started and, to some extent, has to play itself out.  Nebulizing glutathione seems to help quite a bit.

We drove over the pass and headed North on CA 395 with plans of camping at Lone Pine at the entrance to Mt. Whitney. But it was windy and the RV park that took tents was right on the highway, so we headed north to Bishop, bought food, and found a park off the road.  I had a terrible reaction in Bishop, however, even though it is desert and, to my eye, seemed a similar landscape to Desert Hot Springs.  Whatever was there made me emotionally distraught (it took about 10 minutes waiting in the parking lot outside Vons while David bought our food), I woke early feeling exhausted, and all the next day, while driving through the most magnificent scenery, I kept thinking about driving off a cliff and ending the entire nightmare.

Fortunately, once we headed inland and found our way to the Carson River, everything shifted.  I didn't much like the park (it was seedy and the bathrooms were tiny and cramped) but I found my mind returning to normal thinking patterns and I slept well.  We stayed in the area for a week (we were near Markleeville) as we could go into the public library and use wifi whenever we wanted, our phones worked, and Grover Hot Springs was only a short drive away.  I loved being among the Ponderosa pines and alders.  Our neighbor had a very popular hummingbird feeder and we watching those little darlings flit around.  Instead of getting a sudden and dramatic reaction, I experienced a slow decline.  By the end of the week I was always tired and dragging, and my bowels had stopped working.  The last night was the only one that I didn't sleep.

From there, we debated going North to Bend, Oregon via Susanville and spend a lot of time researching both areas. However, the cool nighttime temperatures discouraged us, and in the end, we only went as far as Carson City (less than 2 hours) where finding a Starbucks and Trader Joes made our day.  I felt better in Carson City at a city RV park than I had at anytime in the last month.   It seems ironic that, sleeping with an eyemask and ear plugs because of the city lights and traffic, I'd sleep better than I did in the peaceful parks where we'd been.  We visited Carson Hot Springs twice, and someone stole my Nook from my tote bag while I was napping peacefully on a sunny chaise lounge.  The thief charged A Course in Miracles and another inspirational book to my credit card, which led me to discover the theft.

It was only 3 days ago that we left Carson City and headed East on Highway 50, the "loneliest highway in the US".  What splendid landscape!  Huge empty valleys surrounded my mountains on all sides, endless roads.  We've been though brown barren areas and more verdant valleys and mountain slopes.  Our first night was a long detour (51 miles) from the highway to see the fossils of the ichthyosaur, a huge marine creature.  It was our first night primitive camping and the place was beautiiful, quiet and clear.  We had a splendid view of sunset over the mountains.  I had a little more fatigue than normal adjusting to the high elevation (about 7500).

The next day we drove further east, saw Indian petroglyphs and pictographs in a cave, and camped in a forest at 7900 feet.  Again, it was beautiful, but the nights and mornings were cold.  Tonight we are warmer at the Ely KOA where the showers are marvelous, but I miss the shade and the very fresh, clean air.

Tuesday, June 5, 2012

Safe and mobile housing

Background: Unable to live in my beautiful house in Ohio after getting clear (of mold and other toxins) camping for 2 weeks out West, I piled my Avalon full of camping equipment and left to find a new home in a dry climate.  The cold and the wind sent me south and west until I found Desert Hot Springs, CA, where I felt good enough to stay around for several months.  I searched for housing, but seemed to react to every building I tried out.  As the windy season approached, I left for Hawaii in the hope of finding tolerable housing there, reasoning that in houses designed for good air flow and without the need for heating or air-conditioning, and with beaches to spent time on, I should do well.  I tried eight locations on two islands, Oahu and the Big Island. After getting a series of increasingly violent reactions to the place no matter where I went, I got on a plane and flew 'home' to the hot water resort in Desert Hot Springs, CA where I’d previously felt good.  In two weeks I felt back to baseline. By the end of the month I had the energy to take short hikes again.  I then devoted myself to actively looking for mobile housing.

 My search has so far been unsuccessful, but I’ve learned much from consulting with others with CIRS and MCS who’ve found, modified, or built safe mobile housing for themselves. I thought it would be valuable to consolidate and share that information, starting with the picture of an inspiring, renovated-for-MCS trailer.


Pros and Cons of Mobile Housing
There are more cons than pros, so I’ll get them out of the way first. Recreational vehicles are generally cheaply made. They have poor insulation (the best in the industry have 1 ½” of foamcore polystyrene in the walls and ceiling) and thus tend to do poorly in extreme temperatures. Mold sensitive and EMF sensitive people avoid using their AC units and their forced air heating, and so they deal with this by changing locations with the seasons. The less expensive ones use many manmade materials which outgas. Even the expensive ones which use wool carpet and hardwood cabinets put foam behind the flame-retardant treated fabric wall covering. Furthermore, the cheaper construction leads to many things breaking often.

 The value of RVs drops about 5 to 10% a year, whether travel trailer/fifth wheels or motorhomes. Few dealers will take a unit less than 10 years old, and those that do pay very little for it. One dealer explained to me that, after about 13-15 years, too many things break and it is difficult or impossible to find parts to fix them, making them a liability issue for dealers. There are many 15-30 year old units for sale privately on Craiglist and RVtrader, as people try to recoup the money they spent.

Many of the older units have lots of hidden wood which, due to leaks, or condensation issues, can develop a problem with mold. Wood is a porous material. Thus, a mold issue in one part of a unit, even if contained to that area, can make other parts of the unit unlivable for a hypersensitive person.

Size: Even a relatively large unit (e.g. one 27’ long by 8’ wide with slides to add another 2’ width when parked) are smaller than a studio apartment.

For those with EMF sensitivities, a friend of mine wrote:
The small space of the trailer means that using any electrical device or appliance inside is risky for someone with EHS, as you said you have. Using the air conditioner is probably a bad idea, because this is a high wattage appliance with a significant magnetic field. The heater is lower emf, but could potentially still be an issue. You would want to sit/lie as far from it as possible to minimize the exposure. Other sources of emf in the trailer are the water pump (which is intermittent, so probably not a major concern), the refrigerator (which runs on gas, but still has electronic controls and a circuit board), and water heater (same as refrigerator). Again none of these are extremely high in their own right, but in a small space they could potentially be problematic.
On the pro side, price is generally significantly lower than any other kind of housing, making for a smaller initial investment.  If the unit doesn’t work out, you don't have money tied up in it as in real estate, and they're generally easy to sell if in good condition.

Another major draw for CIRS-MCS people is the ability to move around easily. After months to years looking for a safe place to sleep, a CIRS-MCS individual doesn’t want to take a chance again. Furthermore, the outside environment can change. A new neighbor may decide to spray pesticides, a farmer upwind might do crop spraying, a forest fire might start, a nearby building might become moldy and its mVOCs and dead spores drift over, or some industry might come in and dump toxins into the air or water. While events like these put a strain on everyone, for those with CIRS-MCS they can be devastating to health and well being.  

Another consideration for those of us on fixed [low] incomes: you can save a lot of money by dry camping on public land (BLM, Forest Service). A friend wrote:
Trailer life is less convenient and more physically demanding than living in a house, especially if you don't have water and septic connections. "Dry camping" (also called boondocking) like we do requires you to haul in your own water and haul out the septic waste. And washing clothes by hand is certainly more taxing than using a washer and dryer. You can get a washer/dryer combo unit for an RV, which requires using a generator unless you're camping in a place with an electrical connection.
I checked into the price of a washer/dryer which runs on 110 current: $650-950. Generators tend to be liquid propane, gas, or diesel – all fuels which can be problematic for those with MCS.

Strategies for finding a safe space.
hus far, people who’ve been successful in finding safe mobile housing have followed one of these paths:
          a. finding a unit they can tolerate from the start
          b. refurbishing a unit to make it safe
          c. building a unit from the frame up
I’ll talk about each in turn.

Finding a tolerable unit from the start
This usually presupposes only mild MCS, as nearly all units have carpet, foam, and other toxic materials. Because molded fiberglass units tend to have the wood subfloor sandwiched between two pieces of fiberglass in a vacuum seal, some believe these are the safest kind of unit to purchase. There is a lively market in used units, and people say they hold their value. Some brands are Scampi, Casita, Eggcamper. People have asked to spend a night in the potential unit to make sure they can tolerate it. Some owners are willing to do this, but only when they aren’t deluged with callers who don’t have special needs!

Disadvantages: They are all trailers, and tend to be quite small, 10 – 17’. The space, while sufficient for a single person, is a challenge for two people. Think about squeezing a kitchen, dinette, and bathroom into your bedroom and you’ll get an idea. Plastic (fiberglass is a plastic) is electrostatic and tends to suck up toxins like a sponge. Sensitive people say it gets contaminated and can’t be saved. Think of the way a plastic food container smells after storing tomato sauce. The harder plastics absorb less, but do they ever get to 0%?

I also consulted with Earthbound, who won awards for their 'green' construction, They sound promising, but I can't go to Marion, IN to check one out, and they don't yet have dealers around the country.  For more information, talk to Jon at             765-677-9090         


The other 'green' RV I visited was a Coachman Freelander.  It  didn't smell bad, and the salesman let me spend over an hour inside it.  The flooring is some kind of non-toxic linoleum and the cabinet doors are real wood.  I probably could have made do with it, but it felt cheaply made to me, and the price tag was nearly $50K, and I didn't trust the fake materials, whether formaldehyde-free or not.  Whatever is being use to replace formaldehyde could turn out to be just as much of a disaster as the formaldehyde. 


Some questions to ask in purchasing a used RV:
1. Pesticide use?
2. Smokers inside?
3. Cats or dogs?
4. Any history of roof or plumbing leaks?
5. Ever find mold?
6. Ownership history?
7. What product do you use in the blackwater and greywater holding tanks? (most use odor reducers full of formaldehyde – only good one is Odorlos; others dump daily and rinse tanks. Kristi says the half-life of formaldehyde is 5-12 years, so it’s useful to have a full maintenance history.)

 Refurbishing a unit to make it safe
There are three strategies here. The most extreme reactors start with an aluminum frame cargo van or cargo trailer, strip out the wood and make it into a non-toxic shell before they add whatever minimal furniture, tanks, and conveniences they need. Less extreme reactors start with a conventional unit, remove toxic items, and seal porous items.

Extreme reactors – MECU (mobile environmental control unit) invented by Erik Johnson
After having four conventional units go moldy on him, Erik Johnson discovered how to make a livable unit that would not go moldy and would be easy to decontaminate if necessary. He started with an aluminum-framed cargo trailer, stripped the wood from the walls and subfloor, and put in several inches of polystyrene foam insulation. He uses the foam as his interior wall, but also suggests installing an aluminum skin over it. Because the foam outgases in the heat, he set up a permanent rack on top that provides shade. To avoid toxic sealants and caulks, he put in windows that are screwed down tight with a rubber strip under the lip. The small air gaps help provide air exchange when the trailer is closed up. He uses a wood stove inside for heat during the cold months. He does whatever he can to minimize condensation inside the unit .  He keeps his space safe by decontaminating when he returns from trips through congested areas and buildings-- places he cleverly calls “civildevastation.”

On the suggestions of friends, I looked into having something like this build by two companies that make all aluminum cargo trailers, Carson and Aluma. This is not a price comparison, as I asked for different sized units from each company. All would be custom build with no wood anywhere, no sealants, adhesives, tape or silicon, following as closely as possible the guidelines Erik had found safe for himself, and which City Changer had found successful after reacting to the caulking in a pre-built all aluminum trailer. The floor would be made of interlocking plank and the walls would have uprights tubes as support. An aluminum skin would hide the foam insulation.

The largest unit I asked about was an 8.5’ x 18’ trailer with V nose (adds another 1 ½ to 2’ at the front end, with two windows, a side and rear door, 30 amp electrical service, a 6 cu foot refrigerator, a 12 volt battery, a ceiling AC unit with heat pump, 40 gallon grey and black water tanks, 50 gallon fresh water tank, sink, toilet, and outside shower. Total cost $17,000 by Carson. The unit would weigh too much (7000 lbs) to pull with our F 150 pickup (max 3500 lbs) so we’d need a new truck.

Aluma quoted these prices for a bare shell without tanks, toilet, or electric, just the trailer with foam insulation and aluminum skin:
 7 WIDE X 18 LONG PLUS A 3FT VNOSE-$11,400 
WIDE X 24 LONG PLUS A 3FT VNOSE-$18,095

 In addition to price, another disadvantage of an all aluminum trailer is that EMF sensitive people can’t tolerate much metal. I’m not sure about this for myself. I’m sensitive enough that I can’t sleep anywhere near a transformer (I discovered that my first night back at Sam’s Hot Water Spa) and I get pains in the my hands whenever I’ve tried to use a wireless mouse and pain in my ear from some cellphones. I’d sure hate to pay to have something built only to discover it intolerable.

To sum up, the advantages are: no wood, no plastic, no caulks and other VOC's, easy to decontaminate, freedom to furnish any way that works for you.

Gutted and rebuilt Airstream trailers
Tad and Justin Taylor’s strategy has been to gut and replace everything in a trailer with inert materials. This is involved and expensive, and uses the same approach as gutting and rebuilding a permanent house with inert materials. The Taylors do this work with used Airstream trailers and sell them from Brattleboro, Vermont at http://healthy-homes.com/ Their stuff is incredibly beautiful. However, if you decide to go this route, ask for samples of the materials. One of my sensitive friends could not tolerate the flooring.

 Another strategy of moderate to severe reactors is the fix up a conventional trailer. Credit for developing this process goes to Jeff, with thanks to my friend Scott for sharing details of the process with me and allowing me to tour two renovated-for-MCS trailers.

 Step 1: Finding a suitable unit to revamp 
a] ideally 7 – 10, maybe 12 years old (enough to outgas, not enough to fall apart if well cared for)
b] something that’s been in a dry climate all of its life (reduces mold risk)
c] no issues with mold or water intrusion
d] no unpleasant odors
e] solid wood cabinet doors

Step 2: Have it inspected by a competent servicing company for any water intrusion and any system issues (plumbing, electric, mechanicals if a motorhome, fridge) before purchasing.

Step 3: Verify that pricing is fair through nadaguides.com.

Step 4: After purchase, have all the windows and seams completely resealed by a professional before taking possession. Scott warned me:
“do not attempt to do this yourself with some sort of ‘safe’ caulk as it will NOT keep water out for long! You must use the right sealants, and not to worry --they do cure quickly and don’t smell after a few days. Failure to ensure that the unit is well sealed from the beginning will ruin even the best remodeling job.”
Step 5: Strip and Remove :
  • Remove and dispose or all furniture (not cabinets, but bed, tables, couch, etc. This is all toxic and must go if it has foam or any fake materials that could outgas.) (One person successfully covered the bed in TuTuff and got used to the sound of crinkling plastic when sleeping) 
  • Strip floors to the plywood subfloor. 
  • Remove carpet from walls, ceiling, cabinet interiors – carpet holds dust, even if regularly vacuumed, and dust contains fungal DNA which can cause reactions. It also holds odors and moisture. 

Step 6: Clean and Seal 
  • Clean everything thoroughly with non-toxic cleaners to remove every trace of dirt, dust, and odors 
  •  To make any RV safe when going down the road, so you don’t get dust, mold, and fumes inside, you have take out every light fixture and seal around the edges, same with all the pipe fittings and such, as there are usually small leaks. Jeff uses electrical and then oil tape.  
  • Cover plywood subfloor with Tu Tuff and foil tape.  
  •  Seal off interiors and exteriors of all cabinets (not exterior wood doors). Scott used aluminum foil and foil tape to get rid of formaldehyde in the pressboard, but said one could also use Tu Tuff if you don’t want foil. 
  •  Because wood absorbs odors and moisture, seal all wood surfaces with Weldbond.
 • An alternative to Weldbond is real shellac to seal all the wood surfaces.


    • From Wikipedia:)  Shellac is a natural bioadhesive polymer and is chemically similar to synthetic polymers, and thus can be considered a natural form of plastic. It can be turned into a moulding compound when mixed with wood flour and moulded under heat and pressure methods, so it can also be classified as thermoplastic. 
    • o Shellac scratches more easily than most lacquers and varnishes, and application is more labor-intensive, which is why they have replaced shellac in most areas. But damaged shellac can easily be touched-up with another coat of shellac (unlike polyurethane) because the new coat merges with and bonds to the existing coat(s). Shellac is much softer than Urushi lacquer for instance, which is far superior in regards to both chemical and mechanical resistance. 
    • o When dissolved in alcohol blends containing ethanol or methanol, shellac yields a coating of good durability and hardness. 
    •  o Shellac is UV-resistant, and does not darken as it ages 
  • If desired for extra safety, seal all walls and ceiling with aluminum foil or Tu Tuff and wheat paste plus foil tape. 
  • Paint all walls, exterior cabinetry (ir pressboard, not if solid wood), and ceiling with Murco M 100, a completely inert clay paint. Keep all windows open while painting and for at least one week afterward to ensure complete drying and offgassing. Do not paint when rain is forecast. 
  • Some people say they’ve successfully used Bioshield as a sealer. 

 Step 7: Lay porcelain tile (not ceramic—not strong enough) down flat over the Tu Tuff. Don’t use thinset and grout, it will crack in transit unless you use brands with toxic plasticizers. 

Now your RV is ready to become your living space. 

 One of the trailers I saw that was done like this was so beautiful that I decided to include a picture of it. It’s so much nicer than any of the prefab ones out there, unless you happen to be a wallpaper fanatic.



 Building your own RV from the ground up. I haven’t looked into this in as much detail, other than getting estimates from Carson and Aluma for wood free units (see above), but I did find some stories on the internet of people who have done this successfully.  

Also look at the many links at www.reshelter.org

There is an interesting option called the tortoise shell house, which advertises as “the high quality, low cost mini home.” They are built on wheels and there are several models available which you can see at http://tortoiseshellhome.com/index.html. The floorplan of the Box Turtle is a smart use of interior space for a 17’ trailer. The company now offers a 28 foot model that gives you a separate bedroom, and loft storage, called The Snapper: Don’t get too excited though. These houses are not free of wood, and thus potentially problematic for us mold sensitive types. 

 However, one can purchase the Galapagos model which is just a steel frame on wheels and allows you to build the walls any way you want. It includes a shower enclosure and faucet. The company says the frame is lighter, uses 30% recycled materials, and can be completely free of hookups by solar power and a high tech water treatment system that uses river or lake water for most of your water usage. One makes a 120 sq ft house, and two can be combined together to double the space. 

I learned about places that build RV’s custom and offer to use non-toxic materials: 
1. Richardson's RV Centers have created a new "Build Your Own RV" division for its customers across the United States. Not only can you build to the exact specs desired online, you can choose the colors, options, and features you like best. Don't know if they can use non toxic materials or not. http://www.buildyourownrv.com/ 

2. http://www.powerhousecoach.com/construction.html makes very expensive, luxury custom built rv’s


What kind of construction is best?
I thought laminated construction with an aluminum frame was the way to go until I spoke with a dealer who handles Excel trailers and fifth wheels.  Excel is considered the top of the line for fifth wheel trailers (also known as gooseneck trailers) as their units are built to withstand temperature extremes down to -10 degrees Fahrenheit.  The reason this company sticks with wood is explained on their website.
Wood is a natural insulator, while aluminum frame coaches transfer the cold from outside to inside, thus allowing condensation to form when that cold outside air meets the warm, humid inside air.  It really doesn't matter how thick your aluminum wall stud is, it can be the standard 1 1/2" stud, 3", or even 6" (For illustration only) and whatever temperature the outside of that stud is, it's going to be the same tempurature as the inside, next to your paneling.... creating condensation.
The issue of condensation is the main source of problems for us mold-sensitive folks unless we have a totally wood free unit.  But with luan wallboard (a thin plywood or pressboard) product on the inside of walls and ceilings, the condensation gets transferred to the wallboard from the back side, and this (even without water leaks) can lead to the growth of mold.  The salesman explained that with polystyrene foam insulation, condensation can occur on the foam and lead to small amounts of mold growing on water droplets.

The website addresses this issue:
Wood rots and aluminum doesn't!  Of course it's hard to argue with that one.  We have found the secret to this age old delema is to keep the water out.  With today's one-piece fiberglass sidewalls, one piece EPDM rubber roof, 2 piece gel-coat fiberglass roof, combined with the best sealants ever, keeping the water away from wood isn't as hard or tricky as it once was.
I thought I knew what to get and now my head is dizzy with indecision.  I liked the Lazy Daze Class C RV's that I saw on lots, but after I went to the factory in CA and saw how much wood was in the frame, I decided to look for a product with aluminum frame and laminated walls.  Now I'm circling back again.


 Other products people have safely used: 
a. Butyl tape 
b. Coating wood with magnesium oxide, which doesn't mold. 
 c. wool insulation sprayed with clay dust to dry it out further as it is already mold resistant and doesn’t outgas as much as polystyrene solid foam 
d. Silcone caulk with Microban (an antigungal). 
e. For more information, there is a good discussion on Erik Johnson’s FB page http://www.facebook.com/permalink.php?story_fbid=223633991073264&id=631131187 

 To learn about RV construction: Rexhall Aerbus in Lancaster CA (greater LA valley) has a video of the construction process for their motorcoaches: http://www.rexhall.com/index.php?option=com_content&view=article&id=35&Itemid=1Rexhall 
On the differences between laminated compared to stick and tin sidewalls on rvs, there is a funny video at http://www.youtube.com/watch?v=0dZp2B_mmow. The disadvantage of the laminated wall structure is that if a leak occurs, water will seep into the luan wall board and it’s expensive to have it repaired.

Wednesday, April 11, 2012

Bumbling around Methylation

Are you wondering whether you should try methylation support, and if so, whose protocol to follow?  If so, this blog might help you get a handle on what to avoid and how to go about it systematically.

My history
I started this blog when I decided to try the simplified methylation program designed by Rich Van Konynenberg for people with CFS to let others know if this program ‘worked’.  Before that time, I’d spent too much money on doctors and protocols that didn’t work, or that made me substantially worse, or that only seemed to work for a short while and then left me yearning for more.  I lacked the optimism that this new ‘miracle’ protocol would turn me around, even though Rich knew more about ME-CFS than any practioner I’d ever met. 

I didn’t make fabulous progress on the methylation protocol, and unlike many on the Yahoo support group, I didn’t feel any detox.  Yet I did experience one issue repeatedly: whenever I took too much B12, whether as hydroxyB12, glutathionylB12 (made by combining OH B12 with glutathione) or methyl B12, I would always feel like I was getting a cold, usually wouldn’t be able to sleep, and sometimes would feel hyper.  Then I’d back off once again and try to build up slowly.  It frustrated me that whichever practitioner I was working with would tell me “Take more B12” except for my mainstream PCP who looked at my high serum levels and suggested I didn’t need any.  So I tried to educate myself.

I joined Amy Yasko’s forum, tried small amounts of all 3 types of B12 (methyl, adenosyl, hydroxyl), multiple types of folate (5-mthf, folinic, folic acid), and many other supplements.  No improvement, no decline.  I tried Fred Davis’ protocol (posted as Freddd on Phoenix Rising) of using only methyl B12 and 5-MTHF.  Same dismal results with the B12 as before.  It was particularly bad if I did exercise when I first got a burst of energy from B12:  I was sure to come down with a cold later in the day.  Finally, I saw Alan Vinitsky, an innovative doctor who’d patented his ideas about methylation, and decided to learn from a pro.  Proof that methylation wasn’t working properly in my body came from my high MCV on standard blood tests.  From him, I learned all the things that methylation does and was better able to identify when it wasn’t working properly.  His protocol was expensive, as it involved taking large amounts of OH B12 combined with even larger amounts of inactive folic acid, up to 20 tablets a day, but I seemed to tolerate it for the first five months.  Then things shifted and I got sicker than ever, with constant colds, sinus infections, and fatigue. 

All these stories, as well as the theories underlying the protocols, are discussed in posts from February 2011 and earlier.

On blogs and internet discussion groups, I read of others who were having tremendous detox with methylation support.  Some were experiencing huge bursts in energy after a few rocky days.  Why not me?

It was around this time that Dr. Vinitsky identified mold as an issue causing my condition and set me on the path of remediating my Ohio house. Six months later, I left it to experience life in the great outdoors where I watched many of my long-term CFS symptoms go into temporary remission. Since then, I’ve been bumbling around with methylation support, unsure which protocol to follow. When I was camping and not going anyplace, I seemed to be able to increase B12 and 5-MTHF week by week. As soon as I started looking at houses in the hope of moving beyond tent camping, I’d get hyper and decide to stop everything, or cut down on B12 until I was taking a tiny piece of a pill.  What could be blocking methylation?

A few clues
Those practicing avoidance for a long time say you have to be in a good place to get detox to occur.  What I think they mean is that, if the body is involved in a chronic inflammatory reaction, you will not detox.  I’m so sensitive that, when I enter buildings, I often get a delayed reaction hours later.  Often I don’t smell or feel anything at the time.  Sometimes I do.  Either way, I find myself hours later feeling edgy, or blue, or hyper, or congested.

Some people can stop these delayed reactions by showering and washing their hair immediately after leaving the place.  The key is to get out quickly and clean up quickly.  To do this, one has to have some ‘realization’ that the place is, or could be, an immune system trigger. My downfall is that I forget until at 3 am, I’m not sleeping and feeling miserable.

Another clue came from Dr. Ben Lynch, a naturopath with a website devoted to methylation disorders and support.  In a discussion of side effects from too much 5-MTHF, Dr. Ben notes: "if one takes methylfolate before inflammation is controlled, the methylfolate will worsen it.”  Side effects of too much methylfolate include: pain, insomnia, irritability, skin rash, achy joints, palpitations, and migraines. 

He recommends the anti-inflammatory herb, curcumin, to offset inflammation, even though it is a methyl donor.  I tried a powerful curcumin preparation while in a chronic inflammatory reaction in my old house, and had bad reactions to it.  I can take the same product now without complications.  Interesting how removing myself from immune triggers reduces inflammation to a point where I can tolerate additional support.

Yesterday I learned from Dr. Lynch that all forms of 5-MTHF are not created equal.  In his post on April 5, http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/, he listed all the names used for methyfolate (there are about 20 of them) and then grouped them into active/effective forms and inactive/ineffective forms.  The prescription types are active and effective.  The OTC (over the counter) supplements vary.  Those that include the Merck-patented Metafolin are fine,  but they max out at 800 mcg compared to the 7.5 mg in prescription Deplin.  With the others, it’s a gamble.

Oops!  I used up my Metafolin-based supplement (Folapro) suspiciously close to the time I started getting unstable,  I also turned down a prescription for Deplin because my insurance wouldn’t pay the high cost, and ordered the least expensive methylfolate I could find.  What was really in it?

So I read more of Dr. Lynch’s blog where I learn that those supplements listing the L form or the S form of methylfolate are effectivde while those that don’t specify probably include a lot of the ineffective D form and R form of the molecule.  The chemistry of how each rotation differs from another is beyond my understanding, but I would love it if someone could explain it and let me post it as a guest blog. In the meantime, I remember that the D or R forms can be stored in the body, especially in the liver, and may inhibit regulatory enzymes related to folate metabolism.  The take home message – read labels carefully. 

I want to avoid all the dyes and fillers used by the pharmaceutical industry to make Deplin, and so I was glad to learn that Quatrefolic (available through Allergy Research Group at 800 mcg and now through Metabolic Maintenance at 10 mg) is a fine alternative to the prescription drugs. However, the cost is about the same. I check my order history and find that the brands I’ve been using in 2012 are using Metafolin. Guess that wasn’t the problem after all.

Back to Dr. Ben’s site where, in a recent post, How Much Methylfolate should you take?, he recommends titrating methyl B12 in combination with methyl folate in the ratio of the supplement he sells (how convenient!) which is 1000 mcg of methyl B12 combined with 800 mcg of Metafolin.  I, on the other hand, bumbled into trying 10,000 mcg of methyl B12 combined with 800 mcg of Metafolin.  Oops!!  (and then I tried injections of methylB12, probably getting even more.  Oops again!)

So now I try again, starting with a safe, low dose, and titrating up.  My Quatrefolic arrives tomorrow in the mail.

What about you? Are you trying to get all your folate from food?  or are you supplementing?
 
As a naturopath, I like the idea that fresh whole food can supply all the nutrients we need.  After all, the Greek physician Hippocrates said “Let food be your medicine” and the Bible similarly instructs us to partake of healing foods from the fruits and seeds of nature.  Yet many of us, despite an organic, whole foods diet rich in leafy greens, do not have sufficient folate in our cells for a number of reasons.  For decades, food has been fortified with artificial folic acid, a stable compound that has to be converted by an enzyme in the stomach into a useable form of folate.  When the bloodstream has high levels of unmetabolized folic acid, it’s a sign this enzyme isn’t working well (or that we’re taking more folic acid in supplements than the enzyme can handle.)  Researchers aren’t quite sure of this, but evidence points to a risk that unmetabolized folic acid has a detrimental effect on folate metabolism.  Another reason to read labels and avoid processed foods!

On top of this, many of us have genetic variants that slow down some of the methylation enzymes or cause us to use up B 12 or B5 or methyl groups too quickly.  In either case, we may find ourselves needing much larger amounts than we could ever get from food.

Even if you don’t have ME-CFS or another neuro-endocrine illness, be advised that methylation is now believed to be a key factor in preventing heart disease and cancer.  It’s an important factor in endometriosis, a healthy pregnancy, and many female syndromes that involve estrogen imbalances as well as mental disorders like schizophrenia, anxiety disorder, and depression. 

This doesn’t make methylation support a panacea for everything that ails you, but since methylation is a process that all cells in the body use to move CH2 radicals from one molecule to another, which supports over 40 different processes in the body ranging from the management of stress hormones, to immune reactions, to estrogen metabolism, to antioxidant control, a glitch in one place is bound to create a jam in another. 

Metametrix now offers a test (@ $150) for unmetabolized folic acid compared to serum methylfolate.  Vitamin Diagnostics Lab , now Health Diagnostics and Research Lab, offers a methylation panel for @ $300 which looks at all the steps in the cycle, including SAMe and SAH, reduced and oxidized glutathione.  In addition, your doctor can run serum folic acid through Labcorp or Quest to see if your levels are high or in the normal range.  But the new rage today is testing your methylation genetics and supplementing according to what you find.  The site 23andme.com offers extensive genetics testing for a very good price and their panel includes the important C677 and A1298 variants that could guide how you approach methylation supplementation.  When you get your results, go to Ben Lynch’s site and find out how to balance your genetics.  Or, if you’re capable of absorbing tons of information, visit the Yasko forum and dig in.

Sunday, April 1, 2012

Better than a view: more Hawaii experiences

What could be better than a view of the ocean?

I love views.  Ocean views, mountain views, panoramic views over hillsides and farms.  I grew up with a mother who willingly paid more for a room with a great view, and who got my father to buy property in West Virginia because it had an amazing 360 degree view of mountains and valleys. So when I found a rental on VRBO with an ocean view from the hillside about Kailua, I took it.  After I’d paid the nonrefundable security deposit, I realized that there was little outdoor living space.  What if the place were moldy?  (the owner had assured me it was definitely not¸ but I’ve learned not to trust owners.) What if it rained? (It did, first rain after a long drought.)  A few other ‘what if’s ran through my head, but we needed a place to sleep and cook meals, and we didn’t want to spend two hundred a night for a hotel.  So with a bit of trepidation and a lot of optimism, off we went.

I immediately loved Kailua-Kona and the energy of the Big Island.  Lots of lava and dry grasses, lots of tropical plants. It was warm and sunny, which was just what my spirit needed to heal.  Our host-owner handed us papaya and oranges from his trees and made us feel welcome and comfortable.  The kitchen was stocked with all kinds of useful utensils; the closet had boogie boards and coolers and beach bags, the place seemed to be mold free and immaculately clean.  Best of all, it had a beautiful view of the ocean.  We watched the sun set while eating dinner on the patio.  My roommate went into the hot tub.  I curled up under a blanket on the sofa, gagged on the laundry-detergent scent of the sheets, got out my sleeping bag and fell into a sweet sleep.

At 2 am I woke with racing heart and terrible cramps in my calf.  I remembered Shoemaker saying that calf cramping can be a sign of elevated C4a, one of the early markers of a reaction to mold.  I got up, set up my sleeping mat outside on the deck, and moved myself to the Great Outdoors.  I didn’t sleep a wink the rest of the night.

The next day I surprised myself by having decent energy, enough to go swimming, walk around some shops in downtown Kailua, meet up with some friends for fresh Kava and dinner.  I slept outside and woke up the next day with a cold and sinus infection.  Ugh!  I was wiped out for 2 days, then congested, cold and tired for the last 2 days.  It didn’t help that the weather turned gray and rainy 2 days in a row.

But in driving up the coast to check out some camping areas, I found places where my head cleared.  I felt particularly good in the south Kohala coastal area.  As soon as we turned around the NW corner of the island, coming into Kaha’au and Hawi, I got congested again.  Taking the highway back through Waimea to Kailua, I felt great on the stretch due E of that dry area and decided I’d look for housing in that area if I ended up staying on the island. I continued to sleep outside and work outside, despite periods of rain, because I felt jittery inside the house.We learned the last day that the owner had a pesticide company come monthly to spray the perimeter and set pesticide pellets in the garden right next to my sleeping area and I wondered how much pesticides could have been triggering me rather than mold..  

I had some trepidation as we left to drive to our new place on the wet side of the island.  I knew it was a beautiful house, and the woman renting it to me is an energy healer I've known through phone and Facebook contact for 5 years.  Surely the place would have good energy, and would be okay because it was right on the beach and fairly new and built over an area of lava flow from 1990 in which nothing grew.  The house turned out to fulfill its promise of being spacious, open, and sparsely but tastefully furnished.  I didn’t smell mold, see any inside mold, or any signs of water damage.  I did noticed lots of mold discoloring the cement walkway and the wooden porch in the back of the house and decided that since it was outside, it probably wouldn’t make a difference. WRONG

For me, outdoor mold does make a difference.   Some of the comments to my post ‘Hawaii on trial’ dealt with whether outdoor mold is toxic or not, and whether moisture alone is enough to cause an existing sinus problem to worsen or not.  One commenter wrote:  “it seems like the possibilities suggested so far are a) that there are toxic molds growing outdoors that are triggering immediate sensitivity reactions upon exposure (as I believe happens as a result of exposure to trichothocene producing Fusarium in farmlands in the Midwest); b) the humidity in the air is causing a sinus infection already present to flare; or c) mold spores in the outdoor air in some places are lodging themselves in the sinuses and causing a new infection.  It would be interesting to know which of these was happening for Janis, in the different places that she is visiting. I wonder how we could figure it out.”

Not expecting to figure it out myself, I went to Dr. Dennis’site, since he’s the one who taught me about fungal sinusitis and inspired me to get a CT-scan.  Here’s what he wrote:

“The real culprit: Mold, that is present in your everyday environment. In 1999, The Mayo Clinic proved that the cause of 93% of all chronic sinusitis is an immune reaction to fungus (mold). When fungi enter your sinuses they cause your immune system to react. Your body generates antibodies to fight the invasion. That battle leaves your sinus lining (the mucosa) pockmarked with microscopic pits that become the breeding ground for bacterial infections. It is only a matter of time before all the symptoms you hate hit you full force. It is also why antibiotics clear the infection only to have it returns weeks later.”
What follows are suggestions for nasal washing four times a day, mold remediation, anti-fungal house treatments, and similar interventions to control the total load of mold..

Dr. Dennis continues:
“It really is that simple. Control the antigen and you control your Chronic Sinusitis. Remember the body is like a bucket. The moldy air you breathe in fills it and the body protocol empties it. High air mold counts keep your bucket full and you sick, because you are constantly breathing in the antigen while only periodically emptying it with your nasal wash. That is why you must do both the body and the environmental protocols to keep the disease under control.”

I certainly agree with parts of this – mold in the air I breathe definitely impacts me.  I have circulating mycotoxins, and probably will continue to have them as long as the fungal foci in my sinuses keep producing toxins. I don't think it could just be moisture, as doing the neti pot helps.

I think Dr. Dennis errs in encouraging people to stay in their houses and try to make them mold free.  The friend who went to see him (and told me about it) was told something else in person:  “Get thee to the desert, to a high elevation, or to the beach—right on the beach, not a block away, and thou wilt be healed.”  Her husband has to stay in a certain metropolitan area that has none of those climates, so with her Dr.’s support, she’s building a house without any woods or forests nearby to keep the mold counts down, and following his protocol in other ways.  Another friend of mine built a house on steel piers and did much better once she moved into it.

Controlling the antigen has not been simple for me (as Dr. Dennis makes it sound).  I couldn’t seem to do enough in the moldy environment.  Too many sick people try to live in their remediated houses, only to fight a useless battle against the mold toxins and bacterial toxins from a water-damaged building (WDB) that are imbedded in parts of the house which were never touched by actively growing mold.  This stuff gets absorbed from moldy air also and some of us react to it.  I chose to leave my house rather than spent $100K or more replacing all the drywall and framing and basement concrete blocks.  I don’t regret it even though it’s been tough.  The gains I made were rapid and rewarding. 

But these get easily reversed when I get a mold hit, not only because sinusitis flares out, but also because of the general immune inflammation that starts up.  This is the process Shoemaker has researched and understood.  It is sad that more doctors, such as Dr. Dennis, don’t realize the significance of Shoemaker’s work for a subset of patients—those of us with ME/CFS, EI, chronic Lyme, and related neuro-endocrine-immune disease.  The immune reaction is a cytokine storm that sets into motion a cascade of reactions which can take from several hours to several days to play themselves out.  Something goes right into the brain (perhaps pieces of fungal DNA, beta-glucans, and/or bacteria and mVOCs) all of which trigger neurological, endocrine, and immune symptoms way more annoying and disabling than a sinus headache or stuffy nose.

I got to reexperience this pretty quickly in the Kaimu Beach house. 

After bringing in our suitcases, we went out to a wonderful meeting that evening with our host and made more new friends at the gathering, getting healing energy and giving it, feeling incredibly connected, peaceful, and hopeful.  When I had my hands on my partner and felt the energy flowing, I knew I had to get back to doing energy healing.  It was a fabulous feeling of having come home to my path.  And frankly, it surprised me as I’d started to write art history articles for conference publications (even though I couldn’t accept the offers to travel and speak at those conferences, and felt pretty sure I’d be going back to that work as my brain cleared.)

Back at our new house, I was too energized to sleep.  I sat out on the lanai working late.  When I finally crawled into my bed, I tossed and turned as my heart raced and my head swirled.  Finally, at some wee morning hour, I got out my camping equipment and set up inside on the living room floor as the outside air was terribly damp.  The floor boards felt coated with water.  Inside I ended up closing all the windows to keep out the damp, but even with a double dose of Xanax,  I got only 1 ½ hours of sleep before really bad calf cramps and a heart knocking on my chest wall like a caged prisoner awakened me.  I could barely stand and walk due to the sudden return of orthostatic intolerance.  And my sinuses hurt, my nose dripped, I coughed and all those messy yucky things.  I spent the day feeling like a zombie with racing heart and poisoned brain as we packed, drove back over the mountain, and found another place to rent in the S. Kohala area. 

On the way over, we tested the theory I learned from Lisa and Erik that going up to high elevations can help to clear your car and your stuff of mold toxins.  The road up to the visitor’s center on Mauna Kea takes one to 9000 feet.  It was cool and sunny, and we hung out for about an hour feeling better by the minute.  I haven’t had any problems in the car since, which admittedly doesn’t prove anything.  I did feel my racing heart calm down as I rested up there. 

I slept like a baby the first night in our new place (9 hours straight).  I could tell I was in a really good place as the 2nd day unfolded.  Despite my near total exhaustion, I could feel myself relaxing deeply, and my mood brightening.  I gave up the idea of taking a flight back to California that evening, and even began to consider staying here long term.  I did yoga nidra, qigong, and stuck acupnncture needles in a few points.  By evening, I felt something shift inside.  It was a nice feeling of settling in, the quiet after a raging storm.  This is better than a view, I found myself thinking as I looked out over the golf course knowing that around the bend, others can see Mauna Kea or the ocean from their terraces.

When my brain was working again, I remembered that my sleeping stuff needed to be decontaminated.  I washed the sleeping bag and pillow case, but that wasn’t enough to stop the raging sinus headaches I woke with every morning.  Apparently, all that stuff, which was in the trunk of the car rolled up in stuff sacks, was not fully accessible to the elevation effect in the course of a mere hour.  Next time I go up Mauna Kea I’ll take everything out and plan on staying for a longer time period. 

In the meantime, I slept in a bed last night.  Yes!  I SLEPT in a real bed.  And what a pleasure it was…. zzzzzzzzzz.  Looking forward to repeating the experience….zzzzz.

Today, my 4th in the new place, I feel my strength returning as my sinuses clear up and my body recovers from the cytokine storm.    For the first time in a week, I felt like taking a walk on the beach, did a little water aerobics in the ocean too.  An hour later, I had to walk a lot because I forgot important things in my car, and I got worn out.  It wasn’t nearly as much walking as I’d done at my best in the desert, but was more than I’d done since I arrived in Hawaii

Added the next day
It is my 5th night here, and my 2nd in a bed, and I am not sleeping much at all.  I don’t know if it was because I went to a new place to take a sauna, got overtired having to walk too far, or because I took a dose of ADH (desmopressin) before bedtime.  I’m leaning towards the ADH as I didn’t feel the same symptoms I usually get from a mold hit.

Desmopressin is used by Shoemaker as step 8 in his 13 steptreatment plan.   I was doing fine on it in the past, when I’d managed to go without a cytokine storm for a long time. I clearly reintroduced it too quickly. Shoemaker repeatedly says in Surviving Mold that, after a new exposure, one has to go back to the earlier steps and introduce them systematically all over again.  Oops!

It’s also possible that the Hilton spa has a hidden mold problem.  I know they have to work to control mold in the steam room because I asked them about it and learned that they clean it every 2 days.  Maybe the amount that builds up every two days is enough to ruin the entire space for hypersensitive persons like me.  I’ll test these two hypothesis over the next week by a process of elimination, stabilization, and reintroduction of one variable at a time.

In the meantime, I realize I have to be more careful.  I don’t like living a limited life, but for the time being, staying at my new home, going to the store, the beach, and some outdoor parks is going to be my life.  I have the enthusiasm and desire to do more, but my reality is still couched in hyper-reactivity.

Are there medical interventions that could make hypersensitivity lessen?  Various doctors have their theories and clinical experience.  Rea focuses on detox through sauna and oxygen, nutritional support, and provocation neutralization testing and shots.  He has patients block reactions in progress with serotonin and/or histamine shots.  Hope focuses on raising CNS glutathione through nebulizing and liposomal supplementation as well as CSM to lower mycotoxin load and other binders (charcoal, bentonite, zeolite) to pull out different groups of toxins.  Vinitsky focuses on supporting methylation with his 5:2 ratio of folic acid to hydroxyl B12. 

My plan is to get into Dr. Hope’s protocol living a quiet, isolated life until I get stable, then introduce sauna (whether the Hilton or through purchasing my own) and finally moving forward through the steps of Shoemaker’s program and increased methylation support, but with 5-MTHF rather than folic acid.  I tend to introduce too many variable too quickly in my enthusiasm and impatience, and need to slow things down.  This is a healing journey, not a triathalon.  I need to enjoy the process without rushing towards the goal or I end up as the hare losing the race with the plodding turtle.


Fortunately, I feel good enough about this place to have a surprising inner certainty that it’s going to work out for quite a while, and that brings me a feeling of tranquility.  Ironically, the desperation I had from the Kaimu Beach place brought me here, while my roommate, whose brain was functioning, found the place online.  In a calmer state I would have eliminated it because it sits on a golf course, near a road with traffic, and is carpeted throughout.  According to the advice of Shoemaker, Rea, Hope, and Nagy (a doctor I haven’t seen but who healed with the help of Rea from CIRS with extreme fatigue and hypersensitivity) carpets hold mold toxins, golf courses are laden with pesticides that interfere with neuro receptors, traffic adds an unhealthy level of solvents into the air.  Yet even though the place is not ideal, I’m experiencing daily improvements, which tells me that it’s good enough for now.

No environment is perfect.  Our world is toxic, with air and water currents carrying chemicals and metals far from the places they were dumped.  I do the best I can, and listen to the wisdom of my body so that, if I’m sleeping, relaxed, and have the desire to be active again, good things are happening inside.

Thank you Kaimu Beach house. Double thanks to your wonderful, compassionate and kind host, a facebook friend I’m glad to have met in person after many years of phone contact. May your desire to spread healing energy help many others in whatever manner spirit brings to each of our destinies.