Big Problems and Slow Solutions / Rants and Silver Linings

The Big Picture

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My Heavenly Heat Sauna, arriving in 1999 and still in use in 2017.

I’m not sure I will ever publish this even though I have been thinking about it for twenty years. As long as I’ve been sick, I’ve been trying to put all the theories, studies, and anecdotes about TILT into some unified cohesive etiology and treatment. This is hubris on an impressive scale because I am not a physician, epidemiologist, researcher, or even investigative journalist. Fortunately my hubris is not driven by some need to achieve a big win. It’s just that the MCS subject has defined my life for twenty years and in a truly naive way, I want my life to make sense. I had not planned on telling anybody if I did figure it out. It just would have been comforting for it to have made sense in my head. Well, I have not figured it all out but I have made enough sense that I can stop obsessing about it as much. The knowledge has not cured me but the process has allowed me to heal from a severe reactor to a mild one. I can function well, albeit in a very modified way, which is an improvement over not functioning at all. So here is what I have learned about our common experience through reading, listening, and living.

How MCS develops…
The common starting point is damage from exposure to substances, usually man-made. But the mechanism for that damage is as varied as the individuals who develop chemical sensitivities. There are multiple reasons why a system might not safely be processing xenobiotics (1) such that some damage is done. The body may have some SNP (2) variations that make it unable to perform certain pathways in Phase I or II of the detoxification system (3). Then you’ve got unprocessed toxins, or halfway broken down toxins accumulating in the body. You might have a largely normal set of genes for detoxification but maybe inherited some epigenetic damage from your parents such that something activates at the wrong time. An infection or prolonged use of antibiotics might create such an imbalanced GI tract that the detox components in the intestinal lining become damaged. Auto immune tendencies, inherited or acquired, could lead to damaging agents that come from within. Even if one has detoxification and immune systems in perfect working order, low dose repeated exposure or single acute exposure to toxins in our every day chemical world can obviously overwhelm our body’s capacity for safe processing. Thus we have Gulf War Syndrome, Sick Building Syndrome, dental mercury poisoning and all those folks who played in the Dursban truck fog.

Whatever the initial damage pathway, the pattern of overwhelming the detox system and/or triggering the immune system means there are plenty of opportunities for sensitization to occur. The theory that makes most sense is that xenobiotics from any of the pathways listed above can damage neurotransmitter (4) receptors in cell membranes until they are kindled (5). The receptors’ function is to  receive neurotransmitters, which are responsible for communicating information throughout the body. Damaged receptors will be more excitable, producing increased symptoms. If they are limbic (6) cells then the sensitized receptors will allow for even more miscommunication with other systems, leading to multi-system symptoms or central sensitization. (7)

Thus the three part approach to treatment…
1. Avoid symptom causing triggers.
2. Heal the damaged pathway to function correctly or at least better.
3. Retrain or reset the limbic system to stop the sensitization.

Why It’s Different for Everyone…
There are an innumerable amount of chemicals in our daily life that could start and increase the kind of damage that leads to sensitization. Moreover, there are innumerable biological processes whose dysfunction would allow those toxins to hurt us more than the average person. Lastly there are innumerable places for that sensitization to start and then spread in the body. That is why there is no one cure for everyone. There are infinite paths to this illness and therefore infinite paths away from it.

I know that I have seen plenty of young people, who were only exposed for a short time, be able to heal from chemical sensitivities by avoiding some triggers, healing the originally damaged system with common sense nutrition and rest, and retraining the limbic system with meditation or Gupta. I am genuinely pleased for them and their relatively low impact approach to recovery. It gives me hope for the future treatment of all quickly diagnosed MCS patients.

But I also know some folks who were so damaged, especially back in the 90s and 2000s when we knew none of this, that the patient may not ever be able to heal their damaged pathways even if they could avoid all the triggers in the world and work directly with Gupta. I know folks like me who avoided triggers and gave my body enough time to heal, but were still limited in making any final recovery progress because my detoxification system had a lot malfunctioning and downright broken pathways. It’s only recently that we’ve got the genetic, metabolite, and intercellular testing available to us which can allow for development of very personalized nutrition and prescription protocols. These can give insufficient pathways the specific nutrients they need to work or compensate enough to work. I  believe Ziem and Pall were on the right track but that tool can be so much more effective when it’s personalized and more finely tuned.

Even if we (doctors, researchers, and patients) don’t fully understand the mechanism, this three part approach makes sense and works better than anything else we’ve got. It is just more time consuming than what we are used to thinking of as medical treatment.

Specifically What I Did…
It took me a few years to truly achieve the first step of removing symptom causing triggers. This was before the green movement and before so many healthy home type books had been published so there was extra trial and error time on my part to really vet everything that goes on or in my body. But eventually those steps allowed me to live free of chronic daily pain and that finally allowed some limbic retraining. Not that I’ve ever done any of the programs, but finding some way to live with a degree of peace seems to be as powerful as any program and I was able to come off of the prescription medications for my nervous system symptoms. I also believe well managed homeopathy and provocation-neutralization can be good tools for undoing sensitization as they address chronic and systemic issues. Once I had a handle on avoiding triggers and had given my limbic system time to regroup, I was healthier. But I was still a moderate to severe reactor because I hadn’t addressed any of the underlying reasons why I was TILTed in the first place. Fortunately by the time I was ready to jump back into the circus with doctors, they had made some discoveries in understanding so many more biochemical processes. I worked with Ziem for a few years and her protocol helped me quite a bit. But in the last 2 1/2 years I’ve made enough progress that I can actually work outside the home part time. Those health improvements have been done under the care of my primary care physician and more importantly, the nutritionist she recommended.

We’ve done testing, specifically Genovations’ DetoxiGenomic Profile, Great Plains’ GPL-TOX and Organic Acids Test, and multiple Doctor’s Data GI analysis. Because I had lived with this illness for almost twenty years before I started seeing her, I knew what my main triggers and symptoms were but it was fascinating to see the evidence of why those are my triggers and my symptoms laid out on a sheet of test results. It seems pointless to go into too many details here as those are specific to me and not applicable to all MCS patients. Suffice it to say that my SNP variations and nutritional deficiencies have led me to a handful of supplements that make a huge difference in my ability to handle daily exposures. I had tried a lot of these in over the counter versions before but apparently getting the right brand, blend, and dose makes a huge difference. After all these years of living with this illness, it blows me away that if I run out of S-Acetyl Glutathione, Alpha Lipoid Acid, N-Acetyl-Cysteine, milk thistle, or diindolylmethane I can regress back to moderate/severe MCS. A few pills – and they’re just nutritional supplements! If only they’d had these two decades ago, along with a health care practitioner to help figure out what I needed.

I am not cured. I continue to live in a very safe home and drive a car with an additional air filter. I have to request that visitors to my home do not wear fragranced product and my food allergies mean that I very rarely eat out. I still use my Heavenly Heat sauna and rarely travel beyond my daily routine of home and work. But I will go to my daughter’s school performance this week in a gym surrounded by perfumed people and I will be ok except for a small headache and nausea for the rest of the day. That’s a victory. Let me repeat that my particular path will not transfer to other cases and be as successful – an infinite number of ways to get it and heal from it. Additionally, I am not suggesting the only way towards health is expensive testing and supplements. But I believe that the three part approach is sound for everyone, whether it cures, heals, or improves. Avoid the triggers, address the original broken pathway, let time or retraining heal that limbic system.

The Big Picture Caveat…
Whatever unique combination of genetics and exposure has lead someone to develop chemical sensitivities, I believe it is worthwhile to identify those reasons for the sole purpose of healing and living a fuller life. But this does not address the larger issue of TILT as an increasingly significant public health issue. None of our individual treatments replace the need to completely reevaluate our society’s dependence on chemicals. The xenobiotic exposure that is part of our illness is effecting everyone on some level. With each year and each generation I know that we will see more and more people developing some form of TILT as an EI. The ultimate cure for MCS is to have our society regulate chemicals in a comprehensive, systematic way such that everyone can avoid the cycle of damage and sensitization before it begins.

Acronyms, Definitions and Further Notes…
MCS = Multiple Chemical Sensitivity
TILT = Toxicant Induced Loss of Tolerance
EI = Environmental Illness

(1)xenobiotic – relating to or denoting a substance, typically a synthetic chemical, that is foreign to the body or to an ecological system.

(2) SNP single-nucleotide polymorphism – A single site in any DNA sequence for which the identity of the nucleotide differs among individuals, often associated with a physiological variation, such as response to a drug, and used as a genetic marker.

(3) Detoxification system -A series of reactions that biotransform xenobiotics into a water-soluble compounds able to be removed safely from the body. This occurs mainly in the liver and to a lesser degree in the intestines and is a complicated multi-step process involving a host of enzymes, with multiple roles, and directed by many different genes. To give you an idea of the complexity, here is a simplified image that my nutritionist uses as a reference in our conversations (I think originally from Alternative Medicine Review by DeAnn J. Liska, Ph.D)

(4) Neurotransmitters -the brain chemicals that communicate information throughout our brain and body. They relay signals between nerve cells. Studies on neurotransmitter receptors TRPV1 and NMDA have demonstrated the kindling or sensitizing process. Those receptors can be found in most systems including respiratory, gastro-intestinal, and immune but are especially active in limbic, where a kindled receptor can miscommunicate with any other system.

(5) kindling – originally, the electrophysiological changes that occur in the brain as a result of repeated intermittent exposure to a sub-threshold electrical or chemical stimulus (as one causing seizures) so that there develops a usually permanent decrease in the threshold of excitability. The term is now more generally connected with sensitization which is the progressive increase in the size of a response because of repeated stimulation.

(6) limbic – a complex system of nerves and networks in the brain, involving several areas near the edge of the cortex concerned with surviving and adaption to the environment. This is where the biological response to stress takes place. It takes in information from the senses and the immune system and adjusts the body’s other systems accordingly.

(7) Dr. Molot pulled together a lot of studies from peer reviewed journals to support this possible mechanism in his book 12,000 Canaries Can’t Be Wrong. But the more generalized idea of limbic sensitization has been theorized by Bell, MiIler, and many more for decades.

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5 thoughts on “The Big Picture

  1. Thank you for this! The three step approach seems really sensible. I have experienced a slow recovery (over four years now and I still can’t work outside the home) by avoiding triggers and resting. I’ll look in to what pathways might have been damaged and how I can support their healing. I suspect I may have been doing this by addressing my food allergies (which skyrocketed after my exposure) and healing my gut by not aggravating it, and eating fermented veg and pro-biotics.

    Can I ask what filter you use on your car, where you got it from and who installed it?? I didn’t even think such things existed. Car pollution is my main trigger so I’d love to get this!

  2. Also – the big picture caveat.

    I truly think that a world designed for spoonies (all of us, with all our needs and triggers) would be so healthy for all the normal people too. Just because the air quality doesn’t impact them as severely doesn’t mean that their quality of life isn’t insidiously affected. And less pollution would mean that global warming would stop, more green spaces would have social benefits as well as health ones, the most amazing and effective public transport system would reduce the need for cars…

    Honestly, if us spoonies weren’t so tired, housebound, locked away and ignored, we would change the world! And what a world it would be!!

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