Sunday, June 22, 2014

Sweet sleep part 2

I wrote this a few weeks ago but held it up because I wanted to find pictures.  Well, I finally realized that I'd never get around to finding pictures, so here it is: JUST PLAIN TEXT.

The good news is that I'm still sleeping well.  I can count on being able to fall asleep at night, as long as I don't try a new supplement or go into a new building.  And so I wanted to share with  you the second, equally important dietary change I made: eating to lower serotonin and estrogen.

But serotonin is the happy molecule, you say.  Can't have too much.
Nope, Ray Peat argues.  Serotonin raises stress.  So does estrogen.

Us women know about high estrogen is not fun when it causes PMS at that time in the month.  I used to get candida infections every month  which went away with menses, suggesting some connection between high estrogen and low immune function.

So why the hype that estrogen makes menopausal women look younger, gets rid of their hot flashes, makes their skin supple?  It's got to be good.

Ray Peat says that it puts stress on the liver, which has to detoxify it and which, when overloaded, has a tendency to recycle estrogen instead of excreting it.  These recycled estrogens are even more potent as stimulator of tissue growth than the first, virgin press from the ovaries and are associated with a high risk of cancer. Peat admits that many menopausal women get symptomatic relief when given estrogen but says, much more eloquently than me, that it isn’t improving their hormonal health. It's like most of modern medicine -- blocking symptoms while creating a demand for more drugs.

One thing about estrogen those of us with ME-CFS and poor mitochondrial function will want to know:  “Estrogen steals oxygen from mitochondria, shifting patterns of growth and adaptation.” 
Toss out those premarins and read more here:

Progesterone is the good guy (gal?). Many following Peat's research take a product known as  Progest-E, which is pure progesterone in a base of Vitamin E.   Women of all ages can take it, but those cycling have to monitor the dosage more carefully than those who’ve reached menopause. 

Progesterone helps the body relax, and restore itself.  Ray Peat wrote:
In experiments, progesterone was found to be the basic hormone of adaptation and of resistance to stress. The adrenal glands use it to produce their antistress hormones, and when there is enough progesterone, they don't have to produce the potentially harmful cortisol. In a progesterone deficiency, we produce too much cortisol, and excessive cortisol causes osteoporosis, aging of the skin, damage to brain cells, and the accumulation of fat, especially on the back and abdomen.  Read more here.  
Of course I ordered some Progest-E and started putting it on my psoriasis patches as well as taking a bit orally and vaginally. But then I was taking progesterone cream for years and didn't experience any great benefits.

Serotonin is another matter.    Ray's the only voice claiming it’s excitatory and doesn’t deserve credit for the ‘feel good’ sensations that many get from SSRIs.
Misconceptions about serotonin and melatonin and tryptophan, which are metabolically interrelated, have persisted, and it seems that the drug industry has exploited these mistakes to promote the “new generation” of psychoactive drugs as activators of serotonin responses.

Peat argues that raising serotonin raises stress, and stress has a counterproductive action on nearly every aspect of our health, except that short-lived feel good of euphoria before the crash.
Some of his articles on serotonin are: 
 Serotonin, depression, and aggression: The problem of brain energy 

Thyroid, insomnia, and the insanities: Commonalities in disease   This stood out for me in my long history of fatigue, g.i. and brain symptoms:
Stress impairs metabolism, and serotonin suppresses mitochondrial energy production. Stress and shock tend to increase our absorption of bacterial endotoxin from the intestine, and endotoxin causes the release of serotonin from platelets in the blood.

So much for theory. Now what I did in practice is .........
Dr. VV told me that, if I want to continue to enjoy muscle meats which are high in certain amino acids which raise serotonin and estrogen, I should supplement with gelatin. Gelatin is high in amino acids used to make calming neurotransmitters (such as glycine).  I started with a box of unflavored gelatin packets to experiment and then moved on Great Lakes hydrolyzed collagen, which is tasteless and easy to mix in cold or hot beverages, and comes from grass fed New Zealand cows.

I also stopped eating muscle meats at night, unless I made lamb shanks or some other gelatinous cut so that I’d get a better balance of aminos.  Liver, by the way, does not seem to have those excitatory amino acids, and I found that I could manage liver at night. As I cut down on meat, I increased my intake of dairy and fruit. I’m still experimenting with the balance that’s right for me. 

I’m still amazed that all this works for me.  I'm also amazed at how much weight I've gained, much of it in my breasts, since I spent decades being unable to gain weight. That's the biggest downside so far to my change in diet.

How you feel is the ultimate judge of what works for you,  but as you make adjustments, or even ask if you should make adjustments similar to those I made, here are two things that are helpful:

1] body temperature.  Dr. Broda Barnes found that patients with morning basal body temperatures below 97.8 were hypothyroid, even if their thyroid tests showed normal.  Peat and others following his work suggest monitoring your body temperature for a week at the following times.
  • upon waking before you get out of bed
  • an hour after breakfast
  • sometime in mid-afternoon
  • at bedtime
Do this for a week and  you’ll have a good view of  your metabolic rate. 

You want 97.8 or higher when you wake up.  You want it to go up after breakfast.  You want it to hit somewhere about 98.6 during the afternoon. Even a little higher is okay.

It’s common for people with ME-CFS to have low body temperature.  Mine always was.  The highest it ever got when I went into a remission and could exercise was 98.2  Now I’m usually up to 98.8 or 99.1 in the middle of the day, and I come down to 98.6 at bedtime.

Everything works better at the temperature it was designed to work at. When our temperatures drop, we're on our way to hibernation, slowing down digestion and elimination, circulation, muscle recovery, brain function, but ironically, not sleep.


2] pulse.  This is the second thing you're supposed to monitor, but I don't,  so I’m going to quote from The Danny Roddy Weblog: 
The pulse rate, another self-diagnostic tool that complements the body temperature, reflects the rate at which the heart is pumping blood, oxygen, and nutrients to cells throughout the body. While many physicians subscribe to idea that “lower is better,” they tend to justify this theory using athletes as shining examples. Besides the fact that it is not uncommon for athletes to spontaneously drop dead, a lower pulse rate is suggestive of reduced blood flow, which, in effect, limits the rate at which cells can generate energy. Similar to the body temperature, there are some caveats to a higher pulse rate. In stress, the pulse rate can be maintained by adrenaline, sometimes elevating the pulse rate to over 100 beats per minute (BPM). Instead of feeling pleasant, elevated adrenaline causes anxiety and poor sleep. In all, a pulse rate of about 85 BPM and body temperature of about 98.6 degrees are suggestive of high rates of efficient energy production, rather than a metabolism maintained by the stress hormones.

Why bother?
 If you're doing fine, don't bother.  If you're living now or have been living for awhile with physiological stress that is constantly high, your energy metabolism has slowed, your cellular respiration has begun to break down, your enzymes and digestion and liver functions will decline in effectiveness, creating an even lower metabolic rate, and eventually you won't be able to continue running on stress hormones.

Because stress hormones, while they warm the body and give  you energy, are catabolic.  They break down tissue.  They damage thyroid.  And without thryoid, cellular respiration stops.

Stress comes in different flavors. There is the emotional stress of anger, fear, sadness. There's the stress of thinking thoughts that lead to anger, fear, sadness. Then there is the stress of lacking nutrients, lacking hormones, low or high blood sugar, being too cold, too hot, pushing yourself into action when you're tired -- all forms of physiological stress. 

Mold causes physiological stress reactions.  It can also mess with the brain and cause all those negative emotions and those damned thoughts.  Thus, even though Ray Peat doesn’t talk about  the importance of the environment, I think it's key to success.  You have to rid yourself of as many causes of stress from the environment as you can.  If you got sick from pesticides, or you got sick from mold, your system will emainsin a state of high alert as long as it is being constantly assaulted by that toxin.

Once you get away and stay away from those environmental stressors, you can begin to calm down. In many cases you have those toxins inside your body now, and so you react to those internal toxins as well as to the external ones you can’t avoid, so it’s not an quick process.

And because you are so unbalanced by having spent years coping with high stress due to these environmental toxins, plus the stress of a low metabolic rate, plus the stress of losing health, friends, family, job (whatever) your first priority in healing is to CALM DOWN.  This means you’ll be as tired as a sloth but you won’t heal unless you shift into the state of rest, digest, sleep, repair, also know as PNS activation.

You'll complain.  You'll doubt.  Everyone will tell you that energy comes later but you won't believe them.  You'll be sure your ME-CFS has gotten worse.

And then, wow, one day you'll realize you can go a full day without a nap, drink coffee all day long and sleep, stand up as long as you want to, and even get that rusty old brain to do some work.






Wednesday, May 21, 2014

Sweet Sleep


I’ve had sleep problems for a long, long time. They got so bad when I came down with ME-CFS in ‘87 that I thought I’d go crazy. Then I had the ups and downs or many, sleeping better whenever I improved, worse whenever I relapsed, but never getting hours of refreshing sleep where I didn’t wake to every barking dog and rustling leaf.

Mold avoidance helped a lot, and my first year was a honeymoon of rising with the sun feeling ready to face the day.  But as I continued to do mold avoidance something shifted.  I thought the solution was being more careful and spent months taking everything out of my living space, washing, throwing out, replacing, blah, blah, blah.  I ended up with this nice shed where I store everything I’m not currently using.   (Shed is way in the back)

NOTHING MADE A DIFFERENCE

That’s when another solution appeared: Ray Peat.

The message was in my mailbox  from an unknown, kind soul dated January 1, 2014.  Almost two months later, I opened it and responded.  “Why Ray Peat? Who are you?”

It gets complicated after that, but the end of the long story is that I started sleeping.  Immediately.

Then I found that when I ignored Ray Peat’s information and ate like I used to eat, I didn’t sleep.  Uh oh.  Instant un-gratification.  Like a trainer standing by with a whip or a nudge.

Only this time the solution was sweet.  SUGAR

OK, don’t yell and don’t faint.  I KNOW you think I’m nuts. I was pretty skeptical myself.  I worried about candida, cavities, and weight gain. So far 2 out of 3 came to pass.  But it’s not all bad because I’m also
1. sleeping
2. enjoying greater mental clarity
3. tolerating thyroid hormone
4. clearing up psoriasis
5. raising metabolic rate  (e.g. body temperature)
6. drinking coffee for the first time in 3 decades and licking my lips
7. having regular predictable bowel movements

“Get to the point already and tell.me.what.you. are.doing.already”
“WTF! sugar can’t do.anyone any good. It’s a fact."


Want to read a different point of view?  Here’s Ray on sugar issues (http://raypeat.com/articles/articles/sugar-issues.shtml) and on glycemia (http://raypeat.com/articles/articles/glycemia.shtml)


 The guy I live with eats a lot of sugar and feels guilty about it even though he’s been healthy his entire life and is still pretty energetic.  My low sugar high vegetable diet was something he could look up to and now he gives me a hard time when I “encourage” his “bad habits.”

I was pretty resistant to the idea of eating sugar, gelatin, orange juice, milk, and other things my Peat advisor VV told me about.  I was also resistant to NOT eating starches and fiber because I love my homemade almond bread, sweet potatoes, and fresh salads from our little garden.  So the only thing I remember doing seriously at first was STOPPING ALL PUFAS.

PUFAS are poly-unsaturated fatty acids.  Things like hemp-seed oil, plus the not so nice GMO laden things like corn oil and canola oil.  Even olive oil is high in PUFA, but lower than any other oil you can buy, so a little bit of it is ok.  I went cold-turkey on nuts, cheated with no more than 4 nuts a day, substituted butter and coconut oil for fats, poured kefir on my salad instead of olive oil, ate a little more cheese and a little more yogurt than I had been doing.

When I slept night after night after night, I decided Ray Peat was onto something, and I started adding other recommendations like eating liver, reducing animal proteins high in PUFA (chicken, turkey, pork, fish) and even making jell-O with white sugar (gulp).  I read a blog by Matt Stone recommending a mixture of four parts sugar to one part salt and kept this by the side of the bed in case I woke up during the night with pounding heart or hungry or just a little unsettled.  A month later I ordered a glass of orange juice (fresh-squeezed from a restaurant) which took me an entire day to drink--it made me so full!.  Soon I got me some T3 and took a teeny tiny amount.  I slept even better.

I have no idea if other people will ME-CFS will benefit from this approach.  I knew it was for me, even though I was resistant, because the pattern Peat and those inspired by him described of HIGH serotonin, HIGH estrogen, HIGH lipid peroxidation/oxidative stress, LOW progesterone, LOW body temperature, LOW metabolic rate, LOW thyroid hormone was EXACTLY the pattern I had.

Well to be honest, I thought I had low estrogen, since my blood tests barely find any, and my boobs were small and I was always thin, while estrogen is supposed to make women fat and buxom.  Then I remembered that I did have one saliva test after I relapsed in 2000 from juice fasting where my estradiol levels were 900% above normal.  Apparently more than estrogen is required for boobs and body fat. Whatever that is, I've got it, and here's the proof:


Also, to be honest, I had no idea whether my serotonin was low or high, but I identified with the symptoms of high serotonin when I read Ray’s articles about serotonin.  I can’t remember which one I read, but this one gives a close enough idea of how that neurotransmitter relates to stress and the kinds of mood imbalances mold exposures create in me via the stress mechanism.  http://raypeat.com/articles/articles/thyroid-insanities.shtml

I remembered that Dr. Rea (EHCD.com) told me he uses serotonin and histamine to control reactions to environmental toxins. So I was open to doing things to lower serotonin and estrogen.
 Except there is no way in hell I was going to take aspirin!!! Even though it lowers serotonin and estrogen according to Peat. http://raypeat.com/articles/aging/aspirin-brain-cancer.shtml   But eventually I bought some aspirin (it has to be the uncoated kind and pure as well so you can dissolve it in liquid). So far it hasn’t burned holes in my stomach.  I’m pretty cautious though and take a very low dose.

Why did I stop PUFA’s first? It was easy enough, although I really missed snacking on nuts the first two weeks.  But I read stuff in Peat about a relationship between PUFA and oxidative stress measures like MDA.  Mine was high on my first Genova NutrEval test and I thought it was from a mold exposure.  Of course the doc recommended I increase even more, and when I took my second test, I was even higher but I knew I wasn’t being exposed.  Worse, I’d tripled the amount of fish oil I was taking. Hmmm, if Ray Peat  is right, then cutting out fish oil and PUFA foods should lower inflammation. That’s why I took that step first.  Plus it was easier NOT to snack than to make a radical turn about in diet.

You can read more about PUFA’s here, and I promise you this synopsis is easier to follow that Ray’s work on sugar.  http://pranarupa.wordpress.com/tag/pufa/   But if you want to hear what Ray Peat has to say, go to:
http://www.functionalps.com/blog/2012/04/22/fatty-acid-composition-of-diet-reflected-in-fat-tissue/
http://raypeat.com/articles/articles/unsaturatedfats.shtml  (and then search for more and more)

One principle I understood early on is that the liver needs to rebuild its store of glycogen if you’ve been on paleo or something similar for a long time (I was 15 years on raw foods,raw vegan, no amylase, Pat Kane, Weston Price, paleo so I knew my liver glycogen stores had to be in the basement). If you don’t have sugar to burn,  your cells won’t be able to use thyroid.  If you take thyroid hormone and get palpitations or worse, you probably aren’t getting enough sugar needs.

If you starve yourself with a low calorie diet your metabolic rate will go down and your adrenal hormones will have to kick in to burn up amino acids.  Maybe I’ll talk about this stuff in the future in a Part 2.  No promises. I'm too annoyed with the spammers leaving comments to want to post much.

Back to sleeping before I end.  I had one week of three consecutive nights of six solid hours without waking for anything.  I even drank water before going to sleep.  The next week I had one night where I slept eight continuous hours, so soundly I didn't hear neighbors trucks or voices or even my guy waking up and going in and out. That's progress! 

If you want to learn more, here’s my brief guide to the world of Peating, Peatarians, and his maverick views on metabolism, hormones, and diet.

www.RayPeat.com   technical articles to keep you busy learning for at least 5 years

www.DannyRoddy.com   less technical than RP but still pretty complicated; free book on male pattern baldness (Hair Like a Fox)  interesting to women too and anyone wanting to understand cellular biology a la Peat; lots of great links too

Matt Stone at 180degreehealth.com   not at all technical, not strict Peat but inspired by him, easy to read, sends out free books if  you subscribe to his blog

If you have the patience for interviews, search for RayPeat on YouTube  (I haven’t watched any of them but I hear they are worthwhile)

Somewhere in between Matt Stone and Ray Peat you can get some informative essays at:
pranarupa.wordpress.com
functionalps.com (blog)

And here’s a great index, getting close to comprehensive, for everything video and audio on Peat:
http://caramellamorbida.blogspot.com/



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.