Tuesday, September 17, 2013
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.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