Wednesday, October 23, 2013

Housing

One day I talked to a Facebook friend on the phone, the next day I was replying to an ad on Craigslist, and the day after that, I had signed a lease for a stunning apartment attached to a grandiose house. It sat on the top of a small hill overlooking an infinity pool and the Coachella Valley. It definitely didn’t have mold. It was built three years ago with high quality materials, all floors bamboo or natural stone. No odor of dust or chemicals. Smiling from ear to ear as I drove home, I thought how fortunate I was to be indoors for the winter. Finally. Moreover, the place appealed to my sense of beauty and was as close as I could get to the property I hope to buy.







My new friend motivated me after sharing her story about her own hypersensitivity and 18 months of homelessness. Now she was living in a ‘good’ apartment and making rapid progress. She filtered her air and restricted her time in stores, but was able to do some fun things in a busy, polluted city. Diligent research as well as trial and error had taught her, what worked and what didn’t work for mold-sensitive, chemically sensitive individuals. She warned me that three years was going to be a problem, but I wrote back that CA code prohibited formaldehyde in insulation, that this guy had used no VOC paint and some kind of less toxic insulation. The Bau-Biologist who went out to see the place with me approved of that less toxic stuff.

We’re all unique, of course, in that one of us might react to one toxin that doesn’t phase another. But in general, certain principles are sound, which is why specialists called Bau-Biologists can write books about building healthy homes with general guidelines of the chemically sensitive.

I recently read Paula Baker-LaPorte's Prescriptions for a Healthy House and realized that nothing for rent would ever meet her high standards. I even went through every CA and AZ home listed on Greenhomesforsale.com in the category of Healthy Homes. None met up to Paula’s standards for sensitives and none met my mold-resistance criteria.

Even in dry climates like the deserts, there is mold. Fungus is amazing in its ability to adapt to various environments, and fungal spores can sit around for years waiting for the right circumstances to start growing. Most indoor environments eventually give them that opportunity, despite vapor barriers and mold resistant coatings. Either there is a leak someplace, or condensation forms somewhere nearby. All the spores need now is a little bit of food, which is either provided by the building materials or by dust.

It seems scary, like some sci-fi horror film, Mold Takes Over the World. Yet mold is just nature’s way of decomposing organic materials:“for dust you are and to dust you shall return” (Genesis 3:19). Wherever there is organic material there is mold. I do better in the desert where the sand is mostly decomposed granite and the plant life is sparse. But people in the desert don't think much about mold because it's dray, despite the reality that all their housing has its share of wood, paper, plastic, and other organically-derived materials. Thanks to our focus on tight walls with vapor barriers to keep moisture out and toxic gasses from sneaking into the living space., when water does get in, it doesn't get out. As George George Swanson quotes repeatedly in Breathing Walls, nature always wins. This is why George is devoting his life to designing building envelopes that release moisture back into the air quickly enough to prevent the growth of mold.

My first night in the apartment was problematic, but as usual, I was confused about the cause. My sleep had been disturbed for over a month since my partner and I picked up some intestinal pathogen from out green smoothies at a new, raw juice bar. I was still waiting to get into the doctor who could order the tests and was self-treating with probiotics Align™ and Mutaflor™ which seemed to alleviate the worst of my symptoms. The whole experience left me feeling depleted of nutrients with unbearable fatigue and constant post nasal drip..

I came back to the trailer for the next night, slept a little better, but found it visually depressing. This rectangular box with poor lighting, aluminum floor, missing countertop, and broken faucet completely lacked aesthetic appeal. Moreover it was barely functional. Somehow I’d been managing like this, tuning it out of my awareness to survive. Now the contrast struck me full force. I went to the pools for a soak, grabbed a few more items, and rushed back to the rental.

A bit of internet research had clarified that some of my new symptoms were due to Vitamin B depletion, and especially folate. I had run out of B’s shortly after getting the bug and when I got around to placing an online order, I had chosen a smaller bottle from the same company of a slightly different formulation. It just so happened that formulation contained a few items that were not food-based—namely methyl B12. Thinking I could handle it is small doses, I opened a capsule and mixed it with oil, taking a fraction with a spoon. As my tolerance increased, I upped my dose in the new house, taking a fraction several times a day. As the place seemed to be working out, I added Vinitsky’s Illumivites¸ a sublingual B12 folic acid combo, which he had found to support the breakdown of histamine, taking one every time I woke from congestion.

Soon I found that my congestion of a month’s duration clearing up, my swollen tongue returning to a normal size, and my energy greatly improved. Suddenly I could do yoga every day, even some vigorous poses and I didn’t need 8 hours of sleep to feel fine the next day. I patted myself on the back for making a good housing choice.

Then I smelled mold in the bathroom drain. I panicked, told the owner. and went onto Facebook. Four suggestions later, I chose the easiest, non-toxic ones and mitigated the problem. One thing I learned, thanks to Mary Cordaro, a Bau-biology consultant, is that the smell was likely to be sewer gases from a dried out trap. I calmed down, used the baking soda, white vinegar treatment, and then kept the drain closed and a little water in the sink during the day. I also used a natural enzyme product called BioKleen.

My energy continued to increase and suddenly a good thing turned into a no-good thing. I was wired, waking at night, and getting tense muscles every afternoon – symptoms I remembered from life in a moldy Ohio house. Whatever was piling up was excitatory, and it was either the little bit of methyl B piling up or something in the new rental.

If it was too much methyl B, niacin ought to stop it. (Dr.Ben Lynch gets the credit for this tip.) But if it was the house, then I ought to sleep fine in the trailer. If it were both, I was in for a challenge. I began the experiment.

The second night my experiment was interrupted by an alarm that went off in the bedroom of the rental. Awakened in a daze from a xanax-induced slumber, I pissed off the owner by texting him at 3:30 am: “Urgent. Alarm going off. Moving outside with earplugs. Front door open. Just come inside to fix.” I knew it was probably a dead battery, but there were a lot of fancy electronics in the house and the ten foot ceiling prohibited me from checking that theory out. The next morning I had a slew of angry texts because I’d turned off my phone and he’d been trying to arrange for someone to come over and wanted to make sure I’d be home. How was I supposed to know he was in Mexico? If he had read my text carefully, he would have seen the bit about leaving the door open. I let him stay angry and didn’t bother to point this out.

As I looked back over my pithy notes and see if I could reach a conclusion from only 2 days of experimenting, I saw that xanax had induced sleep more often in the rental than in the trailer, where 1 – 2 times a month usually helped me survive exposures to stores.  I’m one of those mold avoiders who doesn’t get huge elief from the shower. I do it anyway,to avoid contaminating my living space, but it rarely makes any difference .If the toxin entered my brain through the olfactory bulb, the reaction will sneak up on me, usually revealing its presence as a very happy energized state when awake and a too happy to sleep state when I get into bed, along with slightly elevated heart rate. It was a case of wishful thinking, with one very perplexing symptom: I felt better inside the building than I did outside on the patio!

Providence brought me resolution in a strange way. The owner asked me to leave. I was, in his opinion, asking for too much. And I had crossed the line by asking him to let me try turning off the electric circuits to the bedroom at night as the EMF Bau-biology consultant had advised. He had even talked to the owner about it and measured the electrical fields. I wrote a long, impassioned plea about why it was important, and left him a photocopy of Jill Neimark’s article, “Allergic to Life” (available at Discover Magazine, which I will discuss in a blog on Phoenix Rising on November 2). The next morning I got a text message asking me to leave as soon as possible.

I panicked. It wasn’t going to be fun to apartment hunt again. Worse, I didn’t believe it was possible to find another good place anytime soon. I’d been lucky once. How lucky could I be again?

The message triggered symptoms of PTSD. My heart raced and pounded all day. Deep breathing and quieting thought had little impact. When I went back to the apartment to do a yoga, I found myself having flashbacks every time I heard the owner’s footsteps. I wrapped myself in a blanket at nightfall, and finally, after four hours of prayer and meditation, was calm enough to eat a little dinner and go to bed. I slept only a few hours before waking with some odd mixture of reactivity, PTSD, and exhaustion and decided after a bout of obsessing that I just couldn’t stay in that place. The unwelcome feeling was overpowering. I carted off some things and drove back to the trailer in the middle of the night. Calm spread through me. 

The next day, I met David at the airport on his return from a three week trip to Ohio, and, after bathing and resting in the trailer, we went over to the rental for a last trial. The place failed. Not only did I wake once with pounding heart and dry mouth, but even after I moved outside and logged in a total of nine hours, I felt like I’d been battered. I stumbled across the floor and realized my gait was as confused and unbalanced as my mind. In retrospect, I could see that I’d been terribly confused and forgetful recently. 

We packed up everything, and as we drove away, David pointed out some water and sludge in a dam less than two blocks away. Where did it come from? It hadn’t rained for over a week.

Maybe it was a good house, but in a neighborhood with some airborne toxins from the water, dirt and sludge. 

Maybe I could tolerate a little methyl B12. Maybe find just the right amount to increase energy without decreasing ability to sleep.

After we moved back into the trailer, a wave of relief washed over me. My gait improved and soon normalized. My confusion abated. I woke the next morning feeling toxic yet rested, and within two days on my detox regimen, the toxic feeling cleared and I felt ‘normal.’


So here I am, facing another winter in the trailer, happy as a lark. The perfect weather—cool nights, warm days, no wind or humidity—is doing its part to make my transition easy. And we took one tiny step to increase the aesthetic appeal. A coat of lemon-yellow/orange shellac lends a warm glow to the Philippine mahogany that revealed itself when the ugly gray vinyl was scraped off. At times it even looks beautiful, as does the view of Mt. San Jacinto through the palms. 

Tuesday, September 17, 2013

Is There Common Ground in the Mold Wars?



I

It pains me to watch “the mold wars” between various factions of the medical community treating mold illness. On one side is the valiant Dr. Ritchie Shoemaker, who wields a scythe to cut through prejudice and ignorance of the mainstream medical community and also holds a sword to defend against the threat of CAM-oriented physicians who have traditionally treated this patient population.

Shoemaker’s book Surviving Mold brought me to an awareness of the role played by mold in my long history of illness. My hunch that he was talking about my life experience was confirmed by the testing of a CAM-oriented practitioner,. Alan Vinitsky (Enlightened Medicine) had studied with Shoemaker but chose to approach healing in a different way.

Less than a year later, I set off on my journey to the dry and hot Southwest, I had to say goodbye to that wonderful CAM-oriented practitioner and find a physician knowledgeable about mold illness who would work with me by phone and email. I thought everyone who treated mold illness followed the Shoemaker protocol and didn’t question my friend’s recommendations much. I established myself as a patient of Janette Hope, a former pulmonologist who had formerly been sick with mold illness and was now recovered and helping others. Her program started with avoidance and CSM (cholestyramine) as well as a nasal spray to deal with the chronic congestion in my sinuses. It took a year before I discovered that Hope was a CAM-oriented environmental medicine physician and not a fan of Shoemaker‘s protocol. The “dangerous drugs” he uses, like Actos and Procrit, concerned her.  Her mentor, Bill Rea of the Environmental Health Center Dallas, similarly expressed his concerns with the toxicity of those drugs and the difficulty his patients would have tolerating them during a visit to his office.

A half year later, I decided to explore the Shoemaker protocol with Scott McMahon, the first physicians RS certified to follow his protocol. Even though I was clearly one of those super sensitive patients who could never tolerate drugs, I was curious to see if, in a mold-free environment, my detox pathways would work more effectively. I was also curious to see if combining the nutritional and detox support of Dr. Hope and other CAM-oriented environmental medicine practitioners could work together with the important discoveries of Shoemaker on how to reverse this crippling illness. Furthermore, I was fed up with my hyper-sensitivity and longed to have stability in my life again.  I figured that, if I could sleep and go to the grocery store again, I’d be one step closer to a normal life.

My first experience with VIP was a disaster and is documented in my post of May 15, 2013  Before starting it, I had met all the requirements needed for a VIP trial but I hadn’t finished all 11 steps leading up to it. but due to my extreme sensitivity, I wasn't able to benefit from VIP's purported ability to tame hyperreactivity. 
The next step on my journey was to normalize ADH and osmolality.  ADH, anti-diuretic hormone, is also known as human arginine vasopressin (hAVP). Mine was low, so low it usually tested as too low to measure. As I thought back to my first years in Gambier, OH, where I first became disabled by mold illness, I remembered keeping a gallon jug of water on my desk and sipping it throughout the day.  I was always thirsty. I saw this as a sign that my ADH had been low since 1983.

My body doesn’t like extreme changes, as it does not have the ability to adjust.  Vinitsky would say this is because the nervous system develops rigidity the longer it is affected by toxins and dysfunctional methylation. My deterioration started in adolescence, gaining momentum in the early 1980's with a sick building and a moldy town.  Consequently, there was little hope that my system would quickly adjust to a major change in its internal environment. My study with autism doctor, Amy Yasko, taught me the benefit of starting slowly and proceeding with caution. 
Dr. McMahon and I decided to start with the lowest possible dose available, desmopressin in the 0.1 mg size tablets.  I cut them into quarters, and started with one quarter. I didn't take the nasal spray because the dose can't be divided into quarters.  My body welcomed the support. Suddenly I wasn’t thirsty all the time.  Suddenly, I didn’t have volumes of pee every time I lay down.  I increased to ¼ tablet twice a day, then took ½ tablet at one time, then ½ tablet with ¼ tablet later in the day, and finally after six weeks, worked up to ½ tablet twice a day.  Once in a while, if I get an exposure, I’ll take another ¼ tablet.

The everyday benefits of this medication are that I’m not losing water constantly through urination. Consequently, I’m less dehydrated because the water I drink and absorb through my skin in bathing, stays around to hydrate my tissues. It seems like a no-brainer now, but I didn’t realize (nor did my practitioners) how much of a role dehydration was playing in my reactivity. Whenever I reacted to some inhalant, my stress response would kick in with palpitations, dry mouth, and an urge to urinate, all of which added to the stress in the physiology of my body. This is because our bodies need abundant water to dilute toxins, maintain blood volume and pressure, and perform many other important functions.  I'd read books like Your Body's Many Cries for Water by Batmanghelidj.  I'd tried alkaline water, structured water, prayed over water, distilled water, and just about every reasonably priced and overpriced water I could find.  No change.Your Body`s Many Cries for Water (ISBN10: 0970245882; ISBN13: 9780970245885) With dsmopressin holding my water retention levels higher, I now seem capable of mediating more exposures without those dramatic reactions I got used to having. At the worst, I now find myself alert until 1 or 2 am, sleep 5-6 hours, and take a nap the following day. Then I’m back to normal. Another effect of the improved water balance/osmolality is that I'm not thirsty all the time. If I'm away from home and can't get a drink, I don't go into a major stress reaction. I'm also sweating more than I ever did.

Getting to this point was not a straight, easy path.  There were many days that I held too much water, feeling my ankles and feet swell until I’d begin to question whether I had gotten orthostatic intolerance all over again.  Other times, I’d feel a rise in stress hormones when I took my dose of desmopressin. It was time to google ADH and cortisol.

Cortisol is an abundant stress hormone released by the adrenal glands which, happen to sit right on top of the kidneys.  It has a complex relationship to the water balance in our bodies (no need for the details), which is why people who have to take high doses of prednisone ™, an artificial cortisol, often look puffy and are given diuretics.  I learned from my reading that ADH works in conjunction with the hormone released by the brain called CRH, cortisol releasing hormone, to increase the release of cortisol.  Clearly, ADH isn’t for ME-CFS patients with high cortisol and high blood pressure, but it can certainly help those of us with low blood volume and a history of low blood pressure. [see a few citations at the end]

As I explored this step of the Shoemaker protocol, I began to see ways in which the 12 step protocol parallels the approaches taken by CAM-oriented environmental medicine practitioners.  The first step is avoidance of toxins, such as mold. Environmental medicine doctors and many patients go further by eliminating pesticides, VOCs, and whatever chemicals they can from their lives.

The next group of steps involves the removal from the body of toxins that cause immune system activation. Shoemaker’s steps 2, 3, 4 work with resistant staph infections in the sinuses, mycotoxins and Lyme toxins recirculating in the body, and gluten in patients whose tests indicate a sensitivity.. Cholestyramine is used for this purpose by Shoemaker, while many holistic doctors use other kinds of binders such as activated charcoal, bentonite, zeolite, chlorella, as well as chelators of metals in order to reduce the total toxic load. Glutathione and methylation support are used in this step to support the natural process the body uses to deal with toxins. Some practitioners will suggest herbs and supplements that support the liver, the main organ for the detoxification of chemicals. Others will recommend sauna to encourage the removal of toxins through the skin, the largest organ of detoxification, while still others focus on the lymph system. Everyone agrees that getting out the toxins and calming the immune system by appropriate treatment of viral, bacterial, and parasitical pathogens is a crucial next step.

After this, Shoemaker’s protocol focuses on restoring balance to hormones and brain peptides.. Step 5 addresses an abundant adrenal hormone, DHEA, which tends to plunge in people with chronic illness. At the early stages of chronic illness, DHEA will rise as it is an anabolic or rebuilding/buffering hormone.  As the chronic infections and toxic load conditions, DHEA begins to drop along with the reduced capacity of the adrenals to produce adequate anti-inflammatory hormones like cortisol and adequate supplemental gonadal hormones (especially after menopause and andropause, where the adrenals take up the slack from the gonads). CAM practitioners often talk about adrenal support, which may involve supplemental DHEA, or nutrition like glandulars and B vitamins. 

ADH, step 6, relates closely to that hormonal feedback loop known as the HPA (hypothalamus, pituitary, adrenal) axis because, as we saw above, ADH works to enhance the release of the hypothalamic CRH. It was quite brilliant of Shoemaker to consider it, when I think of all the time I’ve spent reading and taking courses on supporting the adrenals which, are only one third of the feedback cycle. The gland itself may get ‘fatigued’ but it’s just as likely, maybe even more likely in our toxic culture, for neural inflammation from mercury, cytokines, and blocked methylation to adversely affect this sensitive area of the brain. After all, the brain is neural tissue, and it is exquisitely sensitive to stress. All of us with ME-CFS know what this feels like, when our brains go on strike, either feeling fogged or jumping around as if the synapses were sparking like frayed copper wires. True, there are a few practitioners who offer glandulars to support the hypothalamus, and others who offer various supplements as brain food. I have no doubt this works for some individuals. In my own case, everything I tried was useless, either because it didn’t get into the brain, or because it wasn’t what my body needed to do the repair.

For once I am glad that the pharmaceutical industry has found a stable analogue for hAVP, one that can help the body hold onto fluids without increasing blood pressure by much. Note that the name vasopressin describes the other important function of this hormone, which is to maintain pressure in the cardiovascular system. True hAVP is given by IV in hospitals. I like bioidentical, but I’d never mess with hAVP outside of a hospital setting. Similarly, I like the idea of supporting the self-healing ability of the body, but I also see there are times when the body needs an artificial boost.  In the case of ADH, the normal feedback loop through which it lowers (downregulates) when stress hormones are high and increases (upregulates) when blood volume is low, gets messed up. Whatever it does to adjust to the chronically high stress hormones and chronically low fluid volume it doesn't undo easily. Taking desmopressin will hopefully allow tissues to adjust to higher levels. At a certain point, we hope my body will maintain those higher levels as its new setpoint.

All this brings me back to the beginning, where I spoke about the pain of watching members of the healing community fight over the correct way to help patients damaged by mold, one side arguing for a standardized protocol, the other arguing for a more subtle, individualized approach.

I wish these mold warriors could reach a truce. I wish the CAM-oriented environmental medicine practitioners would carefully weigh those aspects of the Shoemaker protocol that their protocols don’t address. And I also wish that Shoemaker would cease his criticism of those dedicated professionals -- men and women who have dared stretch beyond the drugs and surgeries of their training to devise protocols to help patients.  Here’s the kind of thing I’m talking about:

In a recent newsletter from SurvivingMold.com, following the announcement that Shoemaker will now consult directly with patients by phone, the office manager included the following plug for his expertise:
Just for comparison, ask the other purveyors of mold advice if they have they published more than 15 papers in peer reviewed literature on diagnosis and treatment of inflammatory response syndromes like mold illness? 
Have they published data on treatment of over 7000 patients (adults and children) sickened by the interior environment of water-damaged buildings (WDB)? Have they published on their carefully recorded data that has led to marvelous advances in delineating the physiology of these illnesses?
Have they lectured after invitation at over 75 venues? Have they understood the role of genetic susceptibility in this illness? Have they published 10 books (especially MoldWarriors in 2005 and Surviving Mold 2010)? Have they been accepted as an expert witness in mold illness litigation following Frye/Daubert challenges in over 45 cases nationwide?
Do they have patients from all 50 states and over 40 foreign countries? Have they provided testimony by invitation to the US Senate and in Congressional hearings?
Does he really need to belittle others in order to tout his own accomplishments? Every swing of the sword towards CAM-oriented EM practitioners pushes them farther away from exploring his discoveries.

I’m sure to get in trouble with some readers on this, but I have to say that our society gives too much weight to the truth of our scientific method without giving equal heed to its flaws.  The scientific method slowly became established in medicine and biology in the last three centuries. The foundation, however, as in physics and chemistry, is a mathematics that has been around for over 2000 years.  We have to ask, why did it take so long for the biological sciences to discover how to apply “the scientific method”? After all, brilliant researchers were looking at the human body, plants, and animals with careful attention to every minutiae.  These people knew their math.  They knew their astronomy.  They knew their logic. I ask this question because it is commonplace knowledge that many scientific truths are eventually proven to be less than 100% true, and some of them turn out to be patently false. We have to be careful bowing down to the God of Science when our knowledge is an infinitesimal portion of all there is to know.  Think of everything that was once considered true before the discovery of bacteria. Some of the ideas that were discarded with the new knowledge, ideas like the importance of the biological terrain, and now returning to the forefront of scientific research with studies of the human biome in gut, skin, and internal cavities.

The clinical experience of practitioners who have not done peer-reviewed placebo controlled studies, but who have a base of 30,000 or more patients (combined perhaps upwards of 80,000) who have responded positively to clinical protocols, is a source of valuable evidence. Traditional Chinese medicine and Ayurvedic medicine both developed through years of observation of patient response, still have significant validity in helping patients, and are still poorly understood by modern biological science.


We, the patient community, have to take the initiative. We have to ask our medical practitioners to test until they get to the root causes of our dysfunction. We have to encourage them to embrace all protocols that can help us heal from these isolating and debilitating illnesses. Let’s get as many practitioners, mainstream and CAM, looking for mold and environmental toxins as the causes of our misery. Let’s embrace medicine, detox protocols, nutrition, and whatever other modalities (energy work, acupuncture) support the return to wellness. We’re losing too much in productivity and generating too much suffering to waste time with another war.

More information on ADH and the stress response

Wednesday, May 15, 2013

Vasoactive intestinal peptide (VIP): my experience

I started VIP a week ago on the recommendation of a doctor who studied the Shoemaker protocol.  He thought I'd be a good candidate for it as it has helped many with CIRS, including those with CFS, to downregulate their hypersensitivity. In order to start it, you need to be living in a mold-free environment, or one low enough in mold that you're not reacting.  You also have to pass the VCS to show that your nervous system has recovered to some extent from the damage of cytokines and mycotoxins. MARcOns have to be gone.  I met all three requirements.

The normal, recommended starting dose is 4 sprays daily in alternate nostrils for three to six months, then a maintenance dose of two sprays a day. I did two sprays the first day since it arrived late, increased to three the second day, four the third day. I felt quite relaxed and mellow. I slept a lot more. But I noticed that it felt like I ate too much when I had a normal meal.

By the fifth day, I was having major fatigue issues, too tired to do anything until late afternoon.  I figured that with the added relaxation effect of the VIP, I was noticing the exhausted state of my adrenals.  I decided to try an adrenal glandular my old doctor had given me which, in the past, made me too hyper to sleep.  Unwilling to take a big risk, I bit off a 3rd of the tablet and noticed: NOTHING.

After three days of feeling too exhausted to sit up, having almost no appetite, feeling that I could not digest my food, experiencing air hunger, sleeping 9 hours and needing to nap during the day, I decided to stop the VIP.  My 'trial' lasted 6 and 1/2 days.

I did some research on the effects of this neuropeptide.  It has many effects on the body as do all neurotransmitters, which function somewhat like hormones (in that many tissues, organs, and body systems are affected)  Here are some of the things it does:


  • regulates neural excitability (hence, I felt like I'd taken a quadruple dose of Xanax)
  • involved in learning and memory, especially in brain regions of amygdala, hippocampus, cortex, and hypothalamus  (for a list of specific effects, http://www.biomedcentral.com/1471-2202/9/63)
  • essential for function of circadian rhythms
  • inhibits oxidative stress in the lungs (http://www.ncbi.nlm.nih.gov/pubmed/2474178)
  • anti-inflammatory
  • vasodilation and bronchodilation  (http://www.ncbi.nlm.nih.gov/pubmed/15162259)
  • increases cardiac contractibility and dilates blood vessels
  • immunomodulation
  • induces smooth muscle relaxation in the digestive system especially esophagus, stomach and gallbladder (suggests it should be helpful with GERD)
  • reduces gastric acid secretion stimulated by gastrin
  • in the intestine, supports secretion of water and electrolytes to produce pancreatic juice and bile, and pancreatic bicarbonate, leading to increased motility
There's probably more, but this list is enough to see how much it could potentially benefit ol' me with miserable memory, inflammation, high oxidative, poor circulation (in the presence of mold), slow intestinal transit time and a tendency to constipation, as well as the typical cardiac issues in ME-CFS which show up as weak pulse and sometimes, on EEGs. a flattened Q wave.  

So why am I having so much trouble?  My theory, untested as of yet, is that after being sick for 25 years, I've obtained a sort of homeostasis and by adding in just one of the things that are low, I've upset the balance.  I probably need something to counterbalance the mellow effects of VIP with some vasoconstriction.  But what?

I keep thinking of vasopressin.  It's also known as ADH or antidiuretic hormone.  When low, you have to urinate a lot and in large quantities.  This started happening to me as soon as I moved to Gambier, Ohio, where I used to sit at my desk with a gallon jug of water and go through the whole thing by the end of the day.  I only experience these symptoms now when I get exposed to mold or when I have some other kind of stress that makes me hyper and wired.  I'm not yet convinced that these are always from an invisible exposure.

Vasopressin helps the body retain water, constricts blood vessels, and increases blood pressure.  It's available by prescription in a synthetic form as desmopressin acetate.  I'm hoping to get it, or ideally a compounded natural vasopressin, and see if helps balance some of the unwelcome effects of VIP. As a synthetic form of vasopressin, it doesn't have much effect of raising blood pressure by means of vasoconstriction, because the molecule has been changed in several ways.  So far I haven't found a source that compounds a natural form without preservatives for us sensitive patients.

Shoemaker's 14 step protocol recommends correcting ADH fairly early on as Step 8, while replacing VIP is Step 13.  http://www.survivingmold.com/treatment/step-by-step    As I look over this list, I see that I've done everything through Step 7, so perhaps in our enthusiasm to make it possible for me to live a less isolated life (e.g. going into buildings in a city without getting sick), we missed an important step.











Friday, March 15, 2013

And the winner of the debate is....


Last week I started the Altwaters Technology drops with a mixture of doubt, skepticism, and optimism.  Doubt arose from my long journey with three relapses and many products and therapies, skepticism from my inability to comprehend structured water, and optimism from my phone conversation with Carol Keppler, the founder of Altwaters Technologies.

Now I’m a believer, but it took overdosing on the drops and feeling really crappy to believe that anything was happening from them.

Carol suggested I start slowly because I am sensitive to energies. I took one drop twice a day and felt better than usual upon waking. I was hungrier than usual during the day and more tired than usual after taking a hike. In fact, I felt like I had PEM all over again and got a little worried.  I took it easy the next two days as I was still pretty tired, and find myself feeling colder than usual. I figured this was either due to the drops, or to the normal, unpredictable ups and downs of living with ME-CFS.

By the fourth day, I was aching everywhere, which was an old, very familiar feeling. To my great pleasure, it reminded me of how far I’ve come over the years. I called the Lymie who recommended this stuff.  “What specific benefits did you get?” I asked.

She went on at length, with great enthusiasm, about how she had overcome her resistance towards exercise and how she was now standing up for herself and living her life the way she wanted to. She told me it was okay to stay on my supplements and decrease when I felt I no longer wanted them. 

I resumed everything the next day. Since I felt better, I increased to 3 drops with the intention of doing them twice a day, but the weather turned hot, and when I was thirsty, I drank the second bottle. Feeling nothing by evening from this increase, I took another 3 drops at night. 

Tuesday I felt terrific. I put 15 drops in my bottle, intending to divide it over the course of the day (having gone from 4 to 9 with no problem, it seemed safe enough. In fact, I really wasn’t worried about being safe, as by now I was convinced that the drops weren’t doing anything anyway. I was stronger than ever at my yoga Pilates course and my mood was wonderful. And so I took another 15 drops in the evening. That began my downfall.

 I barely slept but I thought it was due to one of the questionable supplements, Olenoate.  I took another 15 drops in the morning, and then BAM!  I was too exhausted to move.  I could barely sit up at a film.  I lay around all day, unable to sleep or deeply relax.  When I walked, my legs felt like lead. When I closed my eyes, a trillion electric sparks seemed to whirl inside me. It was like full blown ME-CFS, but something was different.

My Lymie friend said I’d probably overdosed and should take a 1-2 day break. I took her advice, slept better and felt terrific the next day – strong, alert, and happy.

This was the end of the first week, and I can now see the pattern.  When I detox electrical overload with the drops, I get a worsening of symptoms and a return of old symptoms.  My body feels strong for a day, and then starts to detox again.

This is the pattern of self-healing I learned about from Dr.Larry Wilson, consultant to ARL Labs, a company specializing in hair mineral analysis and mineral supplements.  Their founder, Paul Eck, discovered that supporting the adrenals and raising deficient minerals helps the body to heal itself. There is a rhythm to this process that can be visualized as a brick wall with a few bad bricks (let’s imagine lead bricks where there should be calcium.) Unless those bad bricks are on the top of the wall –eg. a very recent symptom – one has to disassemble the bricks above to replace the lead bricks with calcium, and then rebuild. During the demolition, a person feels as if they’ve reverted to the past. During the rebuilding, they start to feel better. Once the wall has been rebuilt, there’s a really good day until the inner construction Hair_Mineral_testing_graphicproject manager finds another place to demolish and repair.  This diagram was developed to indicate the relationships between essential and toxic minerals that Eck discovered over the course of his career through testing and supplementation.  It's a fascinating system.  Following ARL's guidelines, I brought my hair minerals into balance over a period of 7 years. You can read more about their approach at the two links above.

 Now I’m readying myself for the second week of drops and for new surprises.

Friday, March 8, 2013

Skeptic debates Believer



Believer:  I got benefits from frequency things in the past.  I tried Bach Flower Essences and other remedies but never felt a shift, yet when I studied color healing with Jacob Lieberman, I was able to sense changes in response to different colors. My roommate at that training told me about an Australian company that made color essences, which I ordered and used with success.  I even gave some to a Veterinarian, who reported that she had wonderful results with horses. 

Skeptic: I was getting better anyway.  Before I saw Lieberman I was able to take hour walks and sprint 5x across a soccer field.  Working with the Sota Instruments electromedicine pulser seemed to make a difference by forcing nutrients into the cells.  These subtle potions did nothing after I crashed from the fast, which proves they were useless.

Believer: I went to Sound Healing in Albany, OH where they tested my voice and gave me tones to listen to.  These definitely made a difference—and they picked up  my known cortisol and B12 issues.  I got such great results that I wrote a testimonial for them.

Skeptic: Don’t we usually get results when we want something to work?  I read on ProHealth and Phoenix Rising about all kinds of fabulous progress from people, and three months later they were back online looking for something else.  The tones didn’t bring me to wellness and I relapsed again.  After the relapse, I tried to use them but the technology was challenging. This CFS-ME is a relapsing illness.  You probably could’ve improved by eating potato chips!

Believer:  Well even if I don’t completely recover this time—but I might, because in the past I was trying things while living in a moldy house—I’ll welcome anything that improves my quality of life.

Skeptic: I never got anywhere with Willard’s Water, nor with the water imbedded with personalized frequencies from any of those Biotron and QXCI machines, nor the stuff from the Psychotronics Conference, nor any other drops added to water to make it alkaline, absorbent, structured, vibrating, happy….

Believer: Cut it out! I did get amazing results from Yuri Kronn’s Quantum waters, even before I knew anything about them. There was one that made me relax better than any pill; another that worked like magic against constipation.  I wish he’d stayed in business.   

Skeptic:  I opened my first bottle of drops from Altwater Technologies, and made myself a half quart of structured water designed to clear electrical energy.  I don’t expect anything much to happen right away.  Carol told me to dissolve one drop in a quart or more of water—the normal dose is to start with a half dropperful, e.g. 10 drops, but she said I’m too sensitive for that dose. Then I found the packet of salt I was supposed to mix up in the water, so I mixed up another half-quart.
Meanwhile, I’m grumping because she wants me to eat a vegetarian diet, forgo coffee, tea and alcohol, and I’m just not going to do it!  I went without caffeine and alcohol for 15 years and now I can tolerate them and …. What’s the point of getting well if you can’t enjoy these things?

5 pm
Believer:  Is there a connection between the water and this weird feeling in my body?  I lie on my yoga mat waiting for a Pilates fusion class and every cell in my body feels like it’s vibrating…Okay, the teacher’s a hunk, but too young.
  And then there’s this tightness in my neck and shoulders, like I used to feel from sitting at the computer for hours on end.  I’ll work it out in class.
  After class, the tightness is still here.  Ugh! All the lymph spots on my clavicles are tender.  So are the spots on the mastoid and the temples and the knees.

7 pm
   Soaking in the hot mineral pools isn’t enough to relieve my discomfort.  This feels like congested lymph.  Is the water causing this? It could be mobilizing toxins faster than my body can eliminate them?  
Skeptic: Maybe I'm just stiff because I did two backbends Tuesday and took a hike Wednesday and I'm not taking all my supplements.

Wednesday, March 6, 2013

Hope v OMG did I get swindled?


Most of you know what it’s like when a friend has great results with something and insists you try it. I usually balk. I’ve tried a gazillion supplements and herbs and therapies. I try to be open-minded, because I know that when one door closes another opens. But I’m too jaded after 25 years to run through every open door.  I look through it, to extend the metaphor, and if what I see looks inviting one day after another, I walk through.

Done with metaphors. A friend who has chronic Lyme but not CFS tells me she’s getting fantastic results with this water that’s impeded with frequencies.

“Uh huh,” I say, trying to be polite.

“You have to try it.” 

Come on, I think. “I’ll take a look at it,” I say. “What’s the website?”

The next day she calls, and e-mails that she let them know I was going to call and that they’d be able to do a scan for me on Monday.  I don’t listen to the voicemail and don’t call back. But I do decide to look at the website.

I read what I can, click on one of the interviews, turn it off after a few minutes. I am full of skepticism, but my friend is pretty damned insistent.  She’s so excited about this technology that she wants to study it and master it and use it in her healing practice.  I won’t agree to a scan but I do agree to a free 15 minute consultation.  It’s the least I can do, right? 

Before the interview with Carol, I ask her assistant to send me a sample scan so I can see what I (might) be getting into. My suspicions are confirmed.  I look at the numbers in every category and then at the scale on the bottom. I’m probably a -90 in every category.  Maybe just a -30 (=disease) in inflammation now that I’ve improved over the past year. I tell myself I’ll try one bottle of whatever Carol recommends for me and see how I do. If there’s a possibility it could make me less sensitive to things that make a bed soft, I’ll go for it. Sleeping on a hard aluminum surface is getting old.  The organic futons and the chem.-free 100% cotton blankets, even after washing, are going back. Carol is a medical intuitive. I’m mentally ready to hear something about my throat chakra –which I already know is giving me challenges and seems to be the current locale for holding stress.

I’m browsing the product list when Carol calls.  Her voice is nice. She starts relating information about herself which I’ve already read on the website.  I interrupt.  “I’m wondering which product would be best for me to start,” I say.

“Stress reduction,” she says right away, and my heart sinks.  I know I’ve been stressed out.  Isn’t everyone with this illness, especially when I get a reaction to something or other. The night before last was particularly bad because I tried the blankets again. It’s the same old thing.

But Carol goes on, and on, and before I know it, I’m interested in what she has to say.  She’s picking up that I’m extremely sensitive, and that I must have grown up with mold and either financial or emotional stresses (both), and she’s explaining how this affects the energy and electrical systems in the body.  It’s not hard science, but it’s making sense.  Before long, I’m ready to start the entire program of four products that get dropped into water, one each week.  She isn’t persuasive at all, which makes it all the more odd that I’ve had this 180 degree shift.

I ask for clarification about the stress reduction product.

“I don’t think you need that,” she says, now that I’m picking up more about you.  “You’re very intuitive,” she tells me, “currently at 90%. When you finish our program, you have the capacity to be up to 100%.”

How wonderful!  The main benefit I’ve experienced from the energy transmissions of Dahryn and Mahendra Trivedi is a huge shift in my intuition, in being able to listen, and in having the courage to follow through with what I need to do.  I need that extra 10% so I won’t order something else to sleep on that isn’t going to work out, I think.  I tell Carol I’ll go ahead with the full program, but I don’t think I need a scan. 

“You don’t,” she says.  “I’ve already picked up that your ability to repair is at minus 90.”

OMG, I think, that’s exactly what I guessed. I’ve been feeling her words penetrate into my heart chakra.  I’m feeling full of love, a wonderful amazing feeling, reluctant to get off the phone.  If I could feel this way all the time. “I don’t know why I feel compelled to say this, but ‘I love you’,” I say.

When we hang, I’m smiling from ear to ear, my love and joy are so great I want to hug the world. The sky looks bluer, the mountains more majestic. Airborn like a helium balloon, I put on my swimsuit and skip off to the pools thinking, finally,I’m going to recover with this product.

It only takes a split second for that feeling to shift from a dark thought.  I can’t believe I just spent all that money on frequencies when I’ve done that stuff before.  I must be crazy.

And so it is, that sadness overwhelms me.  Even though I lie out in the sun in air close to 80 degrees. Even though the young woman next to me tells me she thought I was a teenage when I was lying next to her with my face and gray hair covered. Even though I still have the memory of feeling overcome by love. Even though I’ve told myself to think positively….

I’m deeply aware that my belief system keeps me from healing.  I am doing better, but after 25 years, my identity has shifted to that of PWC with neurocognitive issues at constant risk of relapse, now turned mold survivor.  I wasn’t to think differently, but I don’t know how. 

Maybe one of the products can help with that.  Didn’t she say there was one to clear emotional memories and beliefs?

(PS, the products arrived today and I’ll start them tomorrow and write updates.)

Friday, March 1, 2013

Dan Neuffer's CFS Unravelled


I highly recommend Dan Neuffer’s CFS Unravelled for anyone with ME-CFS, FMS, Gulf War Syndrome, Lyme, CIRS, and other NEIDs (neuro-endocrine-immune diseases). I also think it will help family members to understand more about the variable symptoms we have and to support us in our efforts to heal.

Dan has a knack for simplifying complex science and presenting it quite clearly to a lay person. He wrote the book after healing himself from CFS, which disabled him for 5-6 years. After recovering sufficiently to exercise and return to a full life, he began meeting other people with ME-CFS, some of whom had recovered and some who just wanted to know what he had done. Dan’s generosity and desire to help others was made further evident in offering his book FREE as a Kindle book through Amazon. If he hadn’t done this, I never would have found the book due to the fact that I’ve stopped reading books, blogs, and forums on ME-CFS unless I’m searching for information on a specific issue.

Dan reminded me of the strategies I used to recover from CFS three times! (Okay, so maybe that's not a TRUE recovery, but each time I recovered to 90% and was able to live a productive, joyful life.) I did these things partly intuitively, and partly because I had no idea what was really making me sick and figured the best I could do was heal the things I knew were wrong, such as my gut, my endocrine system, my emotions, and my chattering mind. Each time I (almost) recovered, as I thought about getting back to work and even took some steps in that direction, some very stressful thing happened in my life, and this stress plunged me back into ME-CFS even though, when I first came down with it, I was having a much less stressful year than my normal life as a college professor.

The first time I relapsed I was still working hard. It had been six years since I had come down with a virus that affected my brain, but I thought I was cured and just having a few problems of aging or stress.  However, the man I fell in love with during a year in Florence on a research grant, and stupidly married, turned out to be extremely abusive. When I escaped from him, in abject terror, my adrenals were in overdrive, my body was depleted of nutrients, my cell membranes were damaged from oxidative stress—all things that Neuffer points out contribute to the pathophysiology and chronicity of ME-CFS.  Worse, I had PTSD and could neither sleep nor relas. I found yoga, meditation (using the Centerpointe technology) and energy work to bring calm into my life. I also made an effort to improve my diet thanks to the advice of a local, holistic doc. In sum, I followed Dan’s recommendations because they came to me as the right thing to do.

The second time I relapsed was six years later. When a former renter set fire to the rental house I owned I went into shock. Arson had been attempted the week before and I’d called out the arson squad to investigate. I felt vulnerable, considering that the fire was started shortly after I finished cleaning the house and drove home. My adrenaline rush was a normal response, but I couldn’t shut it off.  For weeks I was so charged up that I had to go out running every morning to burn off energy (and I’m definitely not a runner) but this gave me a great sense of pleasure after many years of being unable to walk around the block or around a supermarket.  However, because I could only sleep every other night, I surely was burning out all the reserves I’d accumulated over the past few years of careful rest.  

I went to the Tree of Life Rejuvenation center in Patagonia for a vacation, decided to see Dr. Cousens, and followed his recommendation to stay an extra week to do on an (un)supervised raw juice fast. While the fast calmed down my system, it did so by depleting amino acids needed for detox, burning up muscle as well as fat, and within two days of returning home, I developed severe orthostatic intolerance.  Within six weeks, my peace of mind was gone, my blood sugar regulation shot, my sleep disturbed, and my brain unable to concentrate. The work and diet that had helped me heal no longer seemed to make any difference.  And so I started taking classes in natural healing.  I soon became a certified naturopathic endocrinologist and built myself up by supporting my adrenals and other endocrine glands. I healed my gut by going gluten and dairy free (not cheating was really important here) and, with the help of a pharmaceutical drug, rid myself of an intestinal parasite that had weakened me since 1974.  I studied hair mineral analysis and balanced my body’s minerals while doing gentle metal chelation with OTC supplements.  All this greatly improved my functionality and had me teaching yoga daily, writing my memoirs, and starting to take care of things I’d let slide for the past four years. When I got to the point where I could hike for an hour and ride my bike at a decent pace, I thought I’d never crash again.

Yet I did. This time it was the stress of ending a long term relationship in 2007. I crashed, worse again this time than ever before, with a new set of debilitating symptoms that didn’t respond to any of the previous supplements, meditation, exercise, and non-toxic lifestyle regimes I’d explored.  I’m still building myself back up after five and a half years.

The one thing that has helped me the most this time was understanding the role of environmental toxins, such as indoor mold, in creating physiological stress.

What do I mean by physiological stress?  I mean the kind of stress happening in the body as it attempts to eliminate and contain toxins and pathogens, or as it attempts to adjust body temperature, blood sugar, and electrolytes to cope with changing conditions. This stress is a challenge to the body, just like strong emotions, over-exercising, or having too much to do and not enough energy to do it. A healthy body deals with it easily. A body living with a chronic NEID does not.

Dr. Alan Vinitsky worked with me to get to the bottom of my failure to recover, by doing tests that no doctor had ever done before. He’s a brilliant physician, and because he studied with Bill Rea and Ritchie Shoemaker, among others, he has a very broad knowledge base.  He found that, in addition to Lyme which had never been diagnosed before (he used Neuroscience’s new test, My Lyme I.D.), that I was a classic mold illness patient.  Just before I got the test results back, I read Shoemaker’s Surviving Mold, in a moldy hotel resort where I experienced an exacerbation of all my symptoms.

When I got home, I did what nearly everyone does: I got a remediator to clean up my house and tried to save everything I could. Within a few months, I had to leave the house and the town where  I lived for most of my adult life. Because of the dampness in that area, I was inhaling mold spores and mycotoxins daily.  Shoemaker has shown that people who don’t detoxify mycotoxins on their own develop a chronic inflammatory condition in which the immune system is always activated and damages cell membranes until vision, brain hormones, and other functions cease to work effectively. Thus, the body’s own response to toxins and pathogens creates a continuing physiological stress which leaves us vulnerable to any major increase in stress.

Amazingly when, thanks to Lisa Petrison and Erik Johson sharing their recovery stories, I left my house and belongings and moved into a tent in the desert (which was actually quite stressful on a physical level), about 18 of my 25 ME-CFS symptoms disappeared. It still amazes me that oftentimes I find myself standing at the table reading my e-mail when there are empty chairs nearby.  I never did this in the past, not since before the onset of ME-CFS in 1987.  Orthostatic intolerance was the one symptom I could never get rid of until I took this radical journey. 

Things aren't perfect, however.  I still have pretty severe cognitive deficits, a rigid ANS, a poorly regulating hypothalamus, and now a new, amazing sensitivity to infinitesimally small amounts of mold which keeps me from going into many buildings, sleeping on a real bed, and living in a normal house.

Many well educated professionals consider CFS to be an illness of toxicity. Because of this theory, people with CFS explore various detox protocols. But they rarely work! In reality, most everything that pushes detox makes us worse. Dan Neuffer understand this and doesn’t recommend detox, since he doesn’t give much credence to the toxicity theory. But just because detox rarely works does not mean the toxicity theory is wrong.

Cellular toxicity CAN and does cause all the symptoms of ME/CFS.  Dr. Bill Rea of the Environmental Health Center has documented this in great detail in his books. For many of us, it is the missing link, as it was for Lisa Nagy, MD, who is now recovered sufficiently to travel the US lobbying and teaching about environmental illness. Her recent lecture at the University of Pennsylvania Medical school is worth the hour spent listening here:  http://present.knowledgevision.com/account/kv-pr/subaccount/vpm/link/Nagy_Penn_Feb2012.

Toxins damage the ANS, CNS, and ENS (e.g the nervous system), affect all cellular processes and the functionality of the extracellular matrix. One class of toxins made by mold (the mycotoxin tricothecenes) was found to create adrenal failure in a research study Nagy discusses. Those same tricothecenes were used by the Soviets in biological warfare, as explained by Dr. Dennis at http://www.sinusitiswellness.com/articles/mycotoxins-cancer.html

One of the things I learned in my naturopathic study is that the body won’t be able to detox when it has weak adrenals.  Nor can it put the energy into eliminating toxins when it is caught in the stress of surviving.  Neuffer makes this point and therefore recommends that CFS patients work to heal gut and adrenal issues first.  I would add that, even before addressing these areas, a patient has to find out whether mold, pesticides, or other environmental toxins are triggering their system from outside or inside.  There are tests of body fluids from Genova/Metametrix and Real Time Laboratory as well as ERMI and HERTSMI-2 tests of home or workplace interiors, The Shoemaker panel of tests can also help your  physician determine whether you have CIRS, chronic inflammatory response syndrome.

Neuffer’s recommendations can make a huge difference for individuals who are not extremely toxic, or for those whose detox pathways have not been badly damaged by toxins. Shifting to an organic, non-toxic lifestyle, reducing stress, and cultivating hope and positive mental states aids recovery from every illness. However, those with damaged detox pathways, genetic SNP’s that slow their detox, and who live in the presence of environmental toxins may not make significant progress with such changes – not because they fail to follow one of the steps, but because their bodies cannot eliminate stored toxins as fast as they take them in.

Until one eliminates the provoking agents, the immune system, the endocrine system, the nervous system, and every connected organ in the body will continue to act and react in the natural effort to bring homeostasis.

Thanks for your work Dan.  May your book and website help many people recover their health and their lives. You are doing a great service to the ME-CFS community.  I hope you reach out to the greater community of NEID (neuro-endocrine-immune disease), which includes GWS, Lyme, PTSD, and EI.  What you have to say will make a big difference in the lives of all these individuals. 

Sunday, February 17, 2013

Sleep surfaces for the chemically sensitive


What can you sleep on after you’ve exhausted conventional beds, air mattresses, and self-inflating camping pads?  This is the question I had to answer  after a difficult January plagued by insomnia.and the triggering of symptoms.


We moved from the cold house in the Santa Rosa mountains down into the Coachella Valley to live in our newly purchased, used LivinLite VRV toyhauler at the RV park where I did well last year in my tent. After much detective work, I discovered that I was reacting to theThermarest camping mats I'd relied on since departing on this journey in September 2011.  I tested by the process of elimination. 

At first I thought the mats had gotten contaminated, but after getting a similar reaction to brand new Thermarest mats (a cushier model), I came to the conclusion that I was reacting to the chemicals used to make the foam. Back in Ohio I reacted to my natural rubber latex mattress (purchased because it was hypoallergenic) but did not test allergic to latex. The reasonable conclusion was a reaction to the residue of chemicals used to make foam out of natural rubber as well as those used to make other kinds of foam, like memory foam, which is in the Thermarest self-inflating mattresses.  

It was definitely a bummer to have nothing soft to sleep on.  My first escape was into the back seat of my car.  A little tight, but after two sleepless weeks, Zzzzzz’s were sweet. Who cares about stretching out legs when the brain goes into a restful state? I had to catch up on sleep and wipe out the grumps before the urge to stretch my legs out won over.

What worked inside the trailer was tying together the cushions from the outdoor chairs. These foam cushions had three and a half months outdoors 24/7 to outgas.  They don't make a comfortable bed, alas.

One day the owner of  nontoxic.com, Daliya Robson, came to the pools. After hearing that carbon blankets helped a friend of mine travel, I tried wrapping the Thermarest in carbon sheets from her store, covering every surface, and then putting a few layers of sheets on top.  The carbon is supposed to absorb toxins via contact with the mat surface.  They supposedly work the same way, but more effectively, than activated charcoal works in water filters and taken internally, where it is used in poison centers..

I went to the website of the company that makes the carbon sheets and blankets.  The manufacturer is Calgon Carbon.  Carbon cloths are listed under specialty products.  One type has this description:
Due to its microporous structure, Zorflex® activated carbon cloth has an extremely large surface area. To put its capabilities into perspective, just 1g of Zorflex® activated carbon cloth has the surface area of over half the size of a football field. This, combined with the strong electrostatic forces within the cloth, enables the cloth to be highly efficient at adsorbing both liquids and gases.
Following the links, I learned that  Activated Carbon Cloth (ACC) was originally developed by the British Ministry of Defence for use in chemical warfare suits. Information on the properties of the cloth can be found here: http://www.chemvironcarbon.com/en/activated-carbon-cloth/properties-of-zorflex, and in these two fact sheets: http://www.calgoncarbon.com/media/images/site_library/55_Zorflex_Woven.pdf
Zorflex is used medically for wound healing where, when impregnated with silver, it functions effectively as a barrier against infections, even micron-sized viruses, and in face masks.

From this research, it seems reasonable to conclude that one could make a fabulous civildevastation suit. Even a long cape with a scarf to cover the mouth and nose when necessary would be an amazing way to go out in the world.

Daliya has some suggestions on her website for the chemically sensitive:

If you react to toxic cars, old or new carpets, wardrobes, basement mold odors, mattress fumes or more, then consider the use of carbon blankets to absorb the fumes and odors. The activated carbon felt can be reactivated by placing in very hot sun for a few hours in the summer and 5 hours in winter sun. if they tear the separate parts will be effective even in smaller pieces..  Encase to avoid dust particles if you are severely asthmatic let someone else encase the carbon before use. Only 2 people out of thousands have had to do this. Activated Carbon Felt is, inert and insoluble and does not present any environmental hazards and is an improvement to activated carbon conventional granular or powdered activated carbon. 
Environmentally sensitive can use this felt material for protection from toxic fumes, mold odor or tobacco fume situations.  The felt blanket will absorb fumes from the carpet and the air and protect you from fumes and chemicals while it is on or near the offending item. We recommend encasing the blanket with a duvet cover, sew into a flat shee,t make shawls or scarves with it or even masks. 

I’ve been using carbon felt face masks that I purchased through ICanBreathe.com.  These nasks have made it possible for me to spend time in many more places. I’m waiting for the fashion to catch on. When I wear it, I get two questions:  Are you sick? What’s in the air that you aren’t telling us about?

Here’s a picture of me in my Honeycomb mask

 After my success with the Honeycomb, I ordered one of their black lace masks

and wore it Friday to the Palm Springs Art Fair where I got comments like Nice mask, Where can I get one of them?, I need one of those things too. (from David) It looks like you're wearing your underwear on your face!  (Stranger) You're a lucky guy.


I can’t say I gave the carbon sheet a fair trial.  I had my bed prepared with the wrapped sleeping pad, but before bedtime, decided I just wanted to sleep next to it the first night.  Within about 10 minutes, I kept hearing in my head take it outside, take it outside, and I wanted to follow my inner guidance.  Listening to the inner voice has been a crucial part of my recovery.

In my search for non-toxic bedding products, here’s what else I found.
Organic cotton is safe, but anything sold for sleeping has to be treated with flame retardants unless you have a doctor’s prescription. I’m not sure about the rules for cotton blankets.  Since cotton holds moisture, I’ve been warned that it attracts mold.  Also, cotton batting used in futons gets compressed and doesn’t fold well. It’s great for clothing and things which are easily washed and dried.

Shepherd’s Dream has lots of environmentally non-toxic wool products, ranging from futons to mattress toppers to sheets of wool felt.  They sent me their sensitivity kit, which arrived in the mail today. Everything smelled fine.  I set up the test according to their guidelines - put samples in clean glass jars out in the sun and then sniff. The wool bedding smells like lamb fat cooking. I'm not sure I can sleep with this stuff -- maybe under a carbon blanket, since I'm not allergic to lanolin. The other company with lower prices who sells wool futons and mattress toppers had a smell that made me gag, so they are out.

However, the page on wool felts at Shepherd's Dream gave me to the idea to make a bed out of wool blanket. Having taught yoga for a decade, I'm familiar with the wool and wool blend blankets available at a reasonable cost.  They are nice resilience and provide the kind of firm support that I prefer.

A few days ago we went to Harbor Freight to check out their $10 wool blend blankets, made in China, and got a nice dose of gasoline-smelling solvents. Ugh. I did some research and learned that APEO is used in detergents, cleaning agents, and textile production. These chemicals, which are toxic to the environment, are endocrine disrupters to wildlife. In humans, they mess with estrogen metabolism, which leads to cancer and other unhappy conditions.  There is other nasty stuff in dyes.

I checked in with Carolyn Gorman, author of Less Toxic Alternatives and several other books who wrote me that her research on fabrics revealed that permanent press requires many washes and time--say 2-3 years or maybe 24-36 washes--to come out of the fabrics. Textile dyes azo and aniline, the two most toxic, would be similar. However, she wrote that skin doesn’t absorb much from fabric.  Most absorption is through inhalation and ingestion (breathing and eating.)

Because my 2011 Metametrix toxicity panel showed that I already have very high levels of a derivative of APEO, I decided to make a conservative choice. I found, on sale, organic cotton yoga mats and chem free cotton yoga blankets at yogaaccessories.com, and with an extra 15% off online coupon, picked up two of each to make a starter bed. The sale combined with my limited tolerance of the hard floor got me to make a decision before completing my research.  The organic cotton batting sample I got from The Futon Shop in San Francisco smelled like cottonseed oil.  I'm hoping the stuff in the yoga futon mats is a better purified.  At least they are small enough to air out on the clothesline. After I try these out I may add a wool layer on the top, or bottom, or maybe two layers.  I’m waiting for that inner voice to guide me.

I wrote to Polartec because I have no problem wearing that material, it’s fairly inexpensive lightweight, and easy to wash.  A little research reveals that the stuff is just plastic. Yes, plain old plastic, made to be warm because of the way it is prepared to hold air. Some of it is made in the US (in Boston.)  Some is made from recycled plastic, and can then be recycled again, reducing landfill.  I totally support this.   I was tempted to try some for my blanket stack, but the ones sold at Bed, Bath and Beyond had a chemical smell that I would not want to sleep with.  I’m hoping  to learn what chemical residues are in Polartec fabric and then how long these residues last, whether they are water soluble, and how much laundering is required to remove them. Polartec has two new types--fiber with tiny carbon particles from coconut inside the fibers and fiber impregnated with silver, both of which absorb odors and protect from environmental toxins. Plastic, like cotton, does not have natural mold resistance, which is not a big problem with something easily washable that will stay in safe spaces.

Resources for environmentally and MCS-safe non-toxic bedding:
http://planetthrive.com/tag/restful-sleep/
http://www.thefutonshop.com/Organic-Wool-Mattress-Topper-Soft-3-inch/p/731/5694  (not on Planet Thrive list)