A friend loaned me Rea and Patel’s Reversibility of Chronic Degenerative Disease and Hypersensitivity, a thick, technical, soporific medical book which, when all the technical language is peeled away, has an interesting core of great personal relevance to me.
Over the past two weeks, since January 2, I have experienced a dramatic and traumatic transformation. I started waking around 4 in the morning, often with symptoms like palpitations or acid stomach. I’d meditate, relax, think, and eventually get up and start reading e-mail. By the end of the week, I was exhausted. Things improved a bit the second week, and then I started running around again, increasing my exercise, and resuming my supplements. Now I'm trying to understand what is causing what.
My first interpretation of the decline was emotional stress. When I woke feeling panicked, I thought about potential future changes in my life – some of which were actions I planned to take, others decisions I had to make. I identified the panic with fear about these issues and began working on them through journaling, talking, and contemplation. I got to a place of calm about the issues, but the early waking pattern persisted. It was time to look for another interpretation.
A friend who practices extreme avoidance suggested environmental toxins. Surely I’d been in some contaminated space and brought back toxins into my tent. The method of controlling environmental toxins is washing and discarding and of course, avoiding the noxious toxin. And so I washed everything that I could. I left everything out of the tent that night except the bedding I needed to sleep. I avoided going anyplace out of the ordinary. I also stopped all my supplements and medications on the hypothesis that something I’d added, increased, or changed was creating hyperstimulation.
I repeated the strategy for a second night, but I went someplace I’d been before without feeling bad as a result. I felt the fatigue come over me, and I napped that afternoon and slept that evening.
I got feedback on the supplements and meds, and determined that methyl B12 and ampho B nasal spray were the two most likely culprits. I added back my other supplements and resumed my life of house hunting, yoga, coffee shops, and socializing with the RVers in the park. I stopped sleeping again.
Now I'm back to my simple life of sauna and hot tub at the mineral pools, hot yoga, and short walks.I’m working on testing out various hypotheses, this time trying harder to control the variables. It’s a tough challenge, and it’s brought up some questions in my mind about the strategies I use, and others use, to deal with hypersensitivities. I haven’t been practicing extreme avoidance, and I really don’t want to. But I may have to do so if nothing else works – which is how many others I know came to this practice. In the interim, it helps me to understand how it could work, and what other models could also be successful interventions.
How does hypersensitivity develop?
Everyone who gets away from mold, as well as other toxins that made them sick such as pesticides, solvents, and other environmental toxins, eventually goes into hypersensitivity. For some it goes away after a period of time. For others it becomes a chronic, traumatically-limiting lifestyle.
The first volume of Rea and Patel is largely devoted to answering this question, for the authors assert that the hypersensitivity phase is most often ignored or mishandled in medicine. Moreover, they claim it is the main reason for the failure of treatment. My friends who practice extreme avoidance agree with this, asserting that Rea himself fails to handle it effectively due to the location of his
The authors say hypersensitivity develops when the normal processes of dealing with noxious substances fails. Either there is too much toxin for the body to excrete and adjust, or the exposure goes on for such a long time that the ability of the body to adjust gets compromised. This is not a novel idea. For example, Shoemaker says the same about mold illness, where the genetics of certain patients slow the excretion of toxins in those who get sick in low mold environments; at the same time, when the extent and duration of a mold exposure is substantial, even those with healthy genetics have the potential to get sick. Both the buildup of biotoxins and the depletion of regulatory neuro-chemicals like MSH, ADH, ACTH, and VIP create illness with hypersensitivity which Shoemaker sums up with the phrase "sicker, quicker."
What normally happens when something noxious enters the body?
I think it’s useful to understand the normal process so that we can better understand what is going on in our bodies when symptoms appear, for these symptoms are signs of the breakdown of this regulatory process.
First, the body pH drops in the connective affected area in the spaces between the cells (the connective tissue matrix, CTM) as sulfates and acetates are broken off from various organic molecules. I call this the preparation for war.
Then the small blood vessels in the area enlarge to let macrophages get to the noxious stuff so they can surround it. At the same time, fluid flows into the area to dilute the noxious stuff, extra oxygen is brought into the area to speed up the metabolism, and leucocytes arrive to join the fight. I call this the start of war. As you can see, we have troops on several fronts: the cardiovascular system, the immune system, and the oxygen metabolism. Then the blood vessels contract to keep the noxious stuff from getting into the general circulation.
If the battle isn’t won in about a week, the reserves are called up. These consist of macrophages from the bone marrow, lymph nodes, liver, gut, and other tissues which release a type of enzymes (proteolytic) which break down proteins. Then they engulf the noxious substance, the debris from the war, and the damaged lcucocytes. The proteolytic enzymes are like dropping a bomb, after which they start cleaning up the mess. .
Finally the repair and rebuilding crew arrives to rebuild the bombed city, oops, I meant body tissues. These are the fibroblasts putting out collagen and things known as PG/GAGs to heal the wound. If the job can’t be done quickly, inflammation sets in. That’s when CIRS and post-viral or post-Lyme infection CFS, chronic onset CFS, fibromyalgia, and a host of other chronic toxicity diseases set in. That’s when the body becomes hypersensitive.
A question I want answered is 'why does the hypersensitivity seem to get worse when we finally get away from the most noxious toxins?' I hope the book addresses this. When I met Dr. Rea, he gave me the 'barrel-is-full' explanation, e.g. toxic load. But my toxic load was actually lower in late October than it had been the year before when I was not experiencing hypersensitivity.
What factors determine whether inflammation and chronic disease sets in according to Rea and Patel?
Once we get chronic illness, what should we do to reverse it?
Because toxins seem to be absorbed more quickly than they are excreted, and most of us with chronic illness have genetic variants (called SNPs) which slow the detoxification processes known as hydroxylation, acetylation, methylation, sulfation, and glucoronidation, to name those I know I have problems with, the first step in correcting chronic inflammatory disease is limiting the influx of more toxins.
Think about it. If your body already has more toxins than it can deal with, and is telling you this with symptoms such as headaches, weakness, fatigue, itching, and pain, how could it possibly eliminate the backlog if it still has to deal with new toxins coming in?
There are many ways to address this. Shifting to organic food and pure water reduces those coming from pesticides, herbicides, plastics. I have a friend who fully recovered from MS by shifting to organic foods and eliminating cosmetics and other household toxins.
Cutting out or lowering prescription drugs (hopefully with the guidance of a qualified practitioner) reduces chemicals that challenge the detoxification pathways of the liver. Even 'safe' over the counter drugs can cause serious toxicity. I met a woman who severely depleted her glutathione by taking lots of Tylenol, and therefore had no reserves to deal with a pesticide exposure.
Spending time outdoors reduces exposure to indoor air pollution, while relocating to more pristine areas of the country reduces exposure to the solvents and metals from industry, traffic, and other sources of air pollution. But beware. Nature has its own pollutants, such as the terpenes from evergreen trees. Each person’s ideal location will be unique.
The practice of extreme avoidance makes the idea of great outdoor and indoor environments paramount. It’s what I’m doing, not because I thought it was a great idea to try it, but because my hypersensitivity developed to a point where I could not longer tolerate indoor spaces. At the same time, my longing to feel good was nourished by significant improvement while on a summer trip to
Extreme avoidance is a term coined by Eric Johnson for the strategy of avoiding the kind of mold and mycotoxins in the Truckee Lake Tahoe area that made him bedridden with CFS. In six months of extreme avoidance, he moved from bedridden to hiking to the top of
Where does nutrition fit in?
A body with optimal nutritional status will regulate better. It will also detoxify and rebuild more effectively.
Many holistic interventions focus on improving nutritional status, and this usually helps people with stored toxins who are no longer living in a toxic environment. Alas, most people with CFS don't know if their environment is toxic or not unless they can get to a really good place for a while and see if their symptoms start to disappear.
Holistic nutritional interventions try to reverse the processes that the body uses to deal with noxious substances. For example, since lowered pH starts this process, many holistic practitioners have their patients alkalize their body through the use of alkaline diets, or alkaline supplements like baking soda, magnesium and other alkalizing minerals. This usually isn’t enough to shift things in CFS -- at least I've never met anyone who got better doing it, although some get noticeable improvements. I myself tried many variations of alkalizing protocols for years and could never shift my salivary pH into a good range. Reading Rea and Kapel explains why: the circulation of mycotoxins and other toxins in my body, and the continual influx of mycotoxins in my environment, maintained the body in a state of preparation for war.
Many holistic practitioners get great results by targeting increases in nutrients (e.g. supplements, whole foods, raw foods, etc.) Once the nutritional status improves, the body does a better job of eliminating toxins. Some people test for what is needed by challenging the energetics of the body with applied kinesiology or variants on EAV (electro-acupunture according to Voll). Others look at body fluids and solids such as blood, hair, saliva, and urine.
Our testing of nutritional needs is still in its infancy. We can assess vitamin and mineral levels in the blood, but rarely in the tissues (with some exceptions, such as hair analysis for toxic and essential elements). Functional medicine is valuable here as a tool to determine what nutrients are not functioning properly at the time of testing. Labs such as Genova, Metametrix,
However, when war is going on inside, nutrient needs area constantly shifting. For example, during the phase of capillary dilation when the body is letting more macrophages flow into the area hit by something noxious, the dilated blood vessels might cause the symptoms of orthostatic intolerance such as tachycardia, lowered blood volume, and a drop in blood pressure on standing. At this moment, as the body tries to regulate with capillary constriction and nitric oxide, one might show a need for more arginine, even though two hours later, one’s arginine status could test out just fine.
But the bottom line is this: optimal nutritional status will support the process of recovery. We just have to use some common sense by tuning into ways our body communicates its needs. This usually takes some emotional work as well, for we all have patterns of eating connecting to our thoughts and our early experiences, which sends us to comfort foods, junk foods, and foods which give us a temporary fix but don’t nourish us in the long run.
Extreme avoidance can reduce the need for supplements by stopping or slowing the ongoing war. Using binders such as CSM (cholestyramine), charcoal, Chitosan, and bentonite clay, pull out the toxins but increase the need for nutrients by also binding healthy nutrients. In some cases, the toxins themselves block the availability of nutrients.
For example, no matter how much protein I eat, I show an amino acid deficiency. This puzzled me for years. Practioners said my digestion wasn’t good. Others said I was probably burning protein and amino acids for energy because my sugar and fat metabolism was poor. I tried a lot of interventions. It was an ‘aha’ moment to learn that mycotoxins in the class of tricothecenes (which I have) interfere with protein metabolism. Until I get all those tricothecenes out, I’ll need to make a point of taking amino acid supplements and eating high quality animal protein.
What happens when you can’t avoid a toxin because you don’t know what it is? What do you do when your body has and increased need for nutrients but you’ve suddenly become sensitive to those supplements?
Rea tries to avoid this problem by having his patients take supplements on a rotation basis, e.g. once every 4 days. It's complicated to do this. You have to be better organized than I can possibly imagine while living in a tent. Everyone with this illness has the challenges of uncertainty. We often don't know what is triggering us, unless we proceed like scientists by limiting the variables so that we change only one thing at a time.
I'm trying hard to discipline myself this way. But it's hard for me. The other day when I felt good, I so wanted to take a short hike. And so I climbed a nearby hill on the same day I reintroduced my handful of dinner supplements and went to the pools. When I didn't sleep well that night, I wondered which of the three to blame.
Many people practicing extreme avoidance find that their tolerance for supplements increases as their tolerance for exercise increases. You know how your healthy friends and family members seem to take any supplement they want without feeling a thing, while you take B12 or some other nutrient that you supposedly need, and feel hyper instead of better. Apparently, when the external environment improves, the internal environment can also improve. But it doesn’t always do so on its own.
Rea has some answers which involve a lot of testing, and a lot of money, which most of us can’t afford. Once he identifies the things to which an individual has become hypersensitive, he uses individually-determined doses of serotonin, histamine, and antigens to neutralize the response. This is called Provocation Neutralization Therapy and is offered by some allergists and holistic practioners. It's time-consuming to do the testing and it isn't covered by insurance.
Right now I see taking these serotonin and histamine shots as analogous to calling a truce in war. Once the war starts in response to a noxious substance, the injection stops the cascade of symptoms.
Another strategy he uses, because hypersensitivity often spreads once it starts (and because most sick people have developed sensitivities to foods), he has all his patients follow a rotation diet by eating each tolerated food only every four days in order to avoid the further spread of sensitivities.
This started me wondering whether the spreading phenomenon could account for ‘places going bad’ in the practice of extreme avoidance. Could it be that we develop new sensitivities to toxins even as we heal? I ask the question but I think the answer is, ‘probably not’ in most circumstances. People I’ve spoken to who have done this for a long time claim that their hypersensitivity is greatly reduced, that they can tolerate many places they couldn’t tolerate in the past.
Interestingly enough, those practicing extreme avoidance usually find that their food tolerances improve, but some food intolerances and some individuals don’t make rapid progress in this area. Reactions to foods are often delayed by 24-72 hours after eating. Furthermore, some 66% of the population has genes which respond to gluten with an inflammatory immune response in the gut, as Dr. Kenneth Fine of enterolab.com has shown. If you’re trying to stop the war inside but your body starts up another battle every time a cracker or a beer comes into the gut, guess what is going to happen?
I’m only on page 6 of the book so I don’t have any other answers yet. I’d like to see some data on the success rate of Rea and Kapel at reducing hypersensitivy. Those who practice extreme avoidance become very strong in body as long as they continue the practice. They lose their CFS symptoms as well as many of their food and fragrance and poison intolerances. But they still retain hypersensitivity to the environmental toxins (mold, etc.) that pushed them into illness, and consequently their lives are limited by the need to avoid places, people, and contaminated things.
If you’ve been to Rea, Kapel, or another EI practitioner and are willing to share your experiences with hypersensitivity, please post in the comment section below.