Am I “Allergic to Life”?

November 4, 2013

Claudia Miller

Claudia S. Miller, M.D., M.S., is an allergist/immunologist and tenured Professor at the University of Texas School of Medicine at San Antonio.

Janis Bell (JanisB) reviews her personal journey of chronic illness after being inspired by a new article written by Jill Neimark and appearing online today in Discover magazine. It highlights the work of Dr Claudia Miller (pictured) and her theories relating to extreme chemical sensitivity and toxicants, a condition she terms, Toxicant-induced Loss of Tolerance or TILT.

By the time I finished Jill Neimark’s “Extreme Chemical Sensitivity Makes Sufferers Allergic to Life,” (November 2013 issue of Discover Magazine – available free and online today), I was reconsidering my own story, the story I tell myself about the illness that changed my life.

Jill explains the groundbreaking theory of Dr Claudia Miller (pictured), a physician and environmental health expert, and writes:

“Miller studies a phenomenon she calls Toxicant-induced Loss of Tolerance (TILT). The word toxicant refers to a man-made poison, such as Dursban, whereas a toxin is a naturally occurring poison produced by living cells or organisms, such as spider venom.”

TILT happens when a susceptible individual gets sick after toxic exposures and then, instead of recovering, stays sick.

Maybe that sounds like your story, but instead of chemical exposure it’s a tick bite, an unknown virus, a moldy house or workplace, or a traumatic event.

I certainly felt it applied to my own descent into chronic illness, and as I read the article I thought carefully about my journey in a very new light – even though Miller’s research and Jill’s article, deal mainly with chemical sensitivity.

TILT is believed to play a role in neuroendocrine diseases such as Gulf War Illness, and I couldn’t help but wonder what kind of role it might play in ME/CFS.

Reappraising my life…

For years my story appeared straightforward – a sudden onset virus, that hit on the first Saturday of May 1987, led to chronic symptoms and no recovery. It changed me from an upwardly mobile professional to a downward-spiraling searcher of anything that would restore me to health.

Over the next two decades, the name of my condition changed as did the clueless physicians I travelled to see, and the all-too-confident alternative practitioners whose fees ate into my meager income.

While mainstream physicians waited for the virus to be identified by researchers and offered drugs for symptomatic relief – most of which I couldn’t tolerate – I immersed myself into research on nutritional, herbal, and energy therapies. 

Was I too toxic? Was I allergic? Perhaps deficient in some vitamin or antioxidant? Maybe full of parasites or infected with candida?

Over the years, symptoms disappeared and new ones emerged. I experienced hope and disappointment. I was lucky to have three glorious periods of almost total recovery, until they ended within a few months in crushing relapses, each one pushing me lower on the Bell Disability Scale and giving me new challenges to deal with.

Explaining Unexplained IllnessesI tried to understand what caused each relapse but my story didn’t change significantly until I read Martin Pall’s “Explaining Unexplained Illnesses” and learned how all of my extra diagnoses were connected by a vicious cycle of oxidative stress.

Pall explains how nitric oxide and peroxynitrite, abbreviated NO and ONOO (like Oh! no!) damage cell membranes. The membrane is the “brain” of every cell as it decides what nutrient and messengers come in and what toxins and metabolites get out. He himself had CFS for many years.

Through extensive reading as a biochemist at the University of Washington, Pall discovered that the NO/ONOO cycle, which is elevated in acute infections, becomes locked in that elevated state, interfering with cellular functions.

I ordered the anti-oxidant supplements he recommends from Allergy Research Group/Nutricology, and I bought home test kits (Oxidata test kit from Apex Energetics) to monitor a urinary marker of oxidative stress known as MDA (Malondialdehyde), so that I could see if the antioxidants were doing anything for me. 

I’ve learned over the years that most of the things that happen to me don’t show up in medical tests, but my scientific curiosity won over me. Would MDA go up when I felt worse and down when I felt better? There did appear to be a correlation: I felt a little better when I moved MDA into the low range.

Yet Dysautonomia/POTS, my most disabling symptom, together with PEM (Post-exertional Malaise), persisted with the tenacity of a pit bull. I was far from recovered, and far from the highpoints of remission I’d experienced in the past.

Surviving Mold - ShoemakerAnother influence on my own story came after reading Ritchie Shoemaker’s, “Surviving Mold”, while on a family trip to Costa Rica, lying in bed with a view of the Arenal volcano. After I laughed about having “first year medical student syndrome,” we uncovered a coating of the fuzzy black stuff on my bed frame and the underside of my mattress.

We hurriedly checked out and moved into a breezy room at the beach. Within a few days, I could participate in conversations again. By the end of our stay I was walking to nearby restaurants.

When I returned to the States, Dr Vinitsky (Enlightened Medicine) told me I had biotoxin illness as well as a few other opportunistic and causative pathogens no other physician had found, including Lyme disease.

Thoughts about mold pushed the onset of my illness back to 1982, at a time when I took a teaching job at Kenyon College and was assigned an office in the modern Biology building.

It was, I felt, the combination of windows that didn’t open, research animals in the basement, central air, and damp weather, that combined to spread mold spores throughout the building and into the air I breathed all day.

I believed I had the classic respiratory onset, then endocrine and immune issues, all preparing the way for that 1987 virus to knock me down.

ERM Index Values - Shoemaker - Janice Bell - Nov 2013When the ERMI (Environmental Relative Moldiness Index) test for mold in my current house came back with a high score (ERMI analyzes dust for fungal DNA and gives a score relative to other US households), we found mold in the basement under the crawlspace batts.

Survivors online warned me that remediation rarely worked for people like me. Still my partner valiantly tried to save the life we knew, replacing and cleaning and sealing off the affected areas around the house.

I would make a little progress but then crash again, reacting more and more violently to dust scattered in the air from his latest cleaning endeavor.

In desperation, we contacted the remediator in “Surviving Mold”, the book that had become my bible, and took his recommendation to fog the space with Aerosolver. Even though it was custom made for my sensitive body, with ingredients I used in tinctures and eyewash (glycine and borax), it did me in and less than two months later, I was in the car heading out west, my loving partner left to deal with the wreck of our lives.

My attempt at escape…

Although many people online suggested I go camping, I never seriously considered it until the emergence of this crisis.

My partner had been an avid backpacker in his twenties and thirties, yet whenever he suggested a camping trip Christine Lavin’s lyrics to her song, “Camping,” would run through my head:

“I’ve got stars on my ceiling that glow in the dark,

 I’ll open up the windows we can hear the birds in the park,

I’ll put Wild Kingdom on my TV…

This might not be camping but it’s close enough for me.”

Nevertheless, camping is what I ended up doing when other accommodation I tried to rent affected my health even more.

Janice Bell - Tent - Nov 2013

My home under the stars

The camping lifestyle is difficult, yet I never regretted my choice. As symptom after symptom lessened or entirely disappeared, I put up with the hard ground, the cold, the heat, wind, the endless packing and moving, the whiffs of a neighbor’s cigar or cigarettes, the lousy WiFi, the inadequate cell phone service, the dirt, the noise, the diesel fumes of a one ton pickups and large motor-homes.

And I complained whenever the cold wind ripped through my jacket or the rain left me huddled inside dripping nylon walls.

When my most disabling symptoms, PEM and POTS, began to clear in that low mold environment, I often thought, “Maybe all I have is mold illness, not ME/CFS.

Yet my ME/CFS diagnosis was sound, and approved by specialists.  I’d met the Canadian Consensus Criteria and had been a subject for research studies.

I felt there was an association between symptom onset and exposure. And it was interesting, if painful, to witness how certain exposures could suddenly bring on POTS and PEM again, but also satisfying when I experienced the relief as they went quickly away.

Reading about Dr Miller’s theory of TILT, I found myself re-thinking the crisis that sent me in exile from my house and the community where I’d lived most of my adult life:

What made me react to buildings?

Why had my sense of smell become dog-like in its acuteness, picking up fabric softener on a woman across the room and food smells long after a meal had been cooked?

Did everyone who left a moldy house have to go through this misery, and if so, why didn’t Shoemaker mention it?

It perplexed me that, while camping in the desert, I now seemed to be more reactive than I ever was back in Ohio. I had traded a disabling illness for one that left me as isolated and in my worst periods of relapse.  I was spending too much time on survival and not enough on productive, joyful activity that could help me heal. 

I wanted a unit like the one Jill described in her article and that Dr Theron Randolph had created for his own patients. These specially constructed units with filtered air, cotton bedding, and purified water, allowed patients to improve enough that he could test them to find out what was making them sick.

Willliam Rea of the Environmental Health Center in Dallas, houses his patients in similar rooms, but I was deterred by the expense, as well as the fact that my exploratory trip to Dallas had been a disaster (an experience I describe in this blogpost from October 2011 ).

Camping was the closest I could get to an Environmental Control Unit.

“Why am I more sensitive?” I asked Dr. Rea on my initial visit. He pointed to a diagram of a barrel filled with toxins until not one single drop could be added without spilling over the edge. “But I had more toxins in my house in Ohio!” I protested and left feeling very misunderstood.

Detoxify or Die - RogersThe toxic load theory of chronic illness was not unfamiliar to me. I had read the book from Dr Sherry Rogers, a former patient of Rea’s, who had said, “Detox or Die”. But what did any of this have to do with ME/CFS?

I and my friends were reaching the end of our patience. We had tried every classic detox protocol – juice fasting, liver cleanses, raw foods, sauna, and heavy metal chelation – with little or no noticeable benefits.

Worse, my experience with juice fasting at Dr Gabriel Cousens’ Tree of Life Rejuvenation Center had brought on my second relapse.

Yet there appeared to be some connection. After living in a tent for just over a month, I could tolerate CSM (Cholestyramine), the second step of Shoemaker’s mold illness protocol, although I had yet to benefit from its binding of fat soluble toxins.

When I met with Dr Scott McMahon eighteen months later, my Visual Contrast Sensitivity had greatly improved from the reduction of systemic mycotoxins and other toxins that CSM, charcoal, and bentonite pulled out. Maybe Scott knew why I was hypersensitive?

“We don’t know why some people develop MCS [Multiple Chemical Sensitivity],” he told me honestly, “And we don’t really know what to do about it.”

I braced myself on the edge of my seat as I waited for his answer to the next question, only relaxing my grip as I heard his encouraging words,

“Some get well when treated for mold illness.”

Phew! Maybe I was on the right track.

People with MCS, according to Dr Miller, are TILT’ed

We are more sensitive to minute amounts of things that others tolerate with little or no problem. Sure, all these toxicants and toxins eventually catch up to some people, but they can stand at a bus stop in Manhattan or LA without getting congested, losing their balance or becoming suicidal.

Dr Miller has proven that our sensitivity is real, validating the physical changes through publications in peer-reviewed journals. So why am I finding myself beset by gloomy thoughts as I get to the end of Jill’s article?

A few sentences are running through my head on repeat:

“…instead of recovering, the neurological and immune systems remain damaged…”

 “Once genes are switched on […] and once you are sensitized, you essentially have a reprogrammed cell…”

No, no, NO! I’ve been clinging to the hope that someday I’ll live in the world again, go to stores, go to parties. This camping thing has got to end!

I try not to dwell on the thought that I might always be living on the edge, vulnerable to the next exposure, a semi-hermit in our toxic world. But gloom settles into my bones.

However, I remember that Lisa Petrison (Paradigm Change), an ME/CFS survivor who recovered her life through mold avoidance, once told me that nearly everyone is hypersensitive at first, but if they stick with a program of avoidance, they eventually improve.

I mentally compared the intensity of my reactions in the past and my reactions now and noticed a slight improvement.

I contacted Jill to clear things up. Yes, she says, Dr Miller argues that we’ll always be more vulnerable than a undamaged person, but we can recover with proper avoidance.

Dr Miller herself was inspired by Randolph’s work because she saw people getting well in those non-toxic chambers as they unmasked and eventually were treated for their specific sensitivities.

She believes isolation from toxicants is key to healing and, in her blog, Dr Miller writes about how to help veterans with Gulf War Illness:

“The single most important task is to sort out and “unmask” the causes or triggers for their symptoms. This requires an environmental medical unit, or EMU. Congress once endorsed EMU research for the Gulf War veterans but never funded it. Only a few EMUs exist in the world. They are environmentally controlled in-patient hospital units designed to isolate patients from exposures that set them off.”

This encourages me in my plans to find land and build a non-toxic, healthy home where I can avoid mold and other toxicants.

Since Dr Miller isn’t a clinician, the article did not go into therapeutic approaches beyond avoidance of toxicants and toxins. Yet Jill’s summary on the path of toxicants – through the olfactory nerve in the nose and directly into the limbic brain – got me thinking about therapies for the limbic brain that have allegedly benefited patients with MCS and ME/CFS such as Gupta’s Amygdala Retraining and Hopper’s Dynamic Neural Retraining. Individuals swear these approaches made a profound difference to their health.

My own preference for “mind-control” is yoga. Since Jill’s article mentioned one patient who recovered from electo-shock therapy, a treatment used widely in the past to change the brain chemistry of depression, I hold to the belief that we can mobilize and direct the electric patterns of our brains through our thoughts. For millennia, yogis in India have defied the tenets of modern science by walking on hot coals, warming a circle of snow with their body heat, and stopping their hearts – as have Christian mystics. 

Then I find myself wondering if toxins (made by nature as compared to man-made toxicants), shift a body into TILT in the same way as toxicants.

Can fungal, bacterial, and viral toxins provoke neurological and immune system damage that persists even after the offending organisms have left?

Could these infections set up an inflammatory response which gets locked into place and becomes chronic, due, in part, to a vicious cycle of elevated NO/ONOO?

Bodies damaged by toxicant exposure (Gulf War Veterans, Gulf oil spill workers) get opportunistic infections just like those of us with ME/CFS as well as those infected by chronic Lyme Disease.

Are you at risk of Toxicant-induced Loss of Tolerance?

If you think that as you can live in a house and can tolerate a few medications, you are not at risk of TILT, think again. Maybe you remember some doctors who judged you as malingering when you reacted to one medication after another. Maybe family members or former friends think you are crazy and overreacting because you seemed fine one day and complaining of misery the next.

I recommend you give them a photocopy of Jill’s article, “Extreme Chemical Sensitivity Makes Sufferers Allergic to Life,” so they can see that there is scientific validity for TILT. You might just be too masked to see what you are reacting to.

According to Dr Lisa Nagy, a survivor of mold illness and TILT, and now an advocate for the environmentally injured, 60% of CFS patients have chemical sensitivity. If you react to supplements or to standard doses of medications, chances are you have more sensitivity than you realize.

If I’d understood the value of Dr Claudia Miller’s QEESI questionnaire, I would have known before using Aerosolver that I was among the 12% deemed vulnerable enough to go into full TILT. My doctor could have advised me to avoid the risk because it was just too great, and I could be healing from mold now in a nice house or condo in the desert city of my choice.

My friends and blog followers, if you have ME/CFS, be careful to avoid going into severe TILT.

Click HERE for the QEESI questionnaire to see where you score. Print it out (it takes a while to answer and calculate everything). Then come back to share your score in the comments section below.

 

You can follow Janis’s journey on her blog: “Search for the Cure: My Healing Journey”.

Support Phoenix Rising

Phoenix Rising is a registered 501 c.(3) non profit.  We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we’d love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

donate

31 comments

{ 31 comments… read them below or add one }

xks201 November 4, 2013 at 8:52 am

Great article.

BeatriceL November 4, 2013 at 2:31 pm

I took the QEESI test and scored low to moderate on the sensitivities part. However, my life has been pretty much halted by CIRS, and I scored 75 on the "effect on your life" portion, but it was due to mold avoidance, not chemical sensitivity. I can go into a mold-safe building even if it has a lot of chemical odors etc, but cannot go into an odor- and chemical-free building if it is contaminated by mycotoxins. I wouldn't stay inside a building that has odors but I have no particular reaction to it; it is an intellectual decision to not expose myself to this stuff.

anniekim November 4, 2013 at 2:43 pm

Really interesting article, thank you. I am a bit confused though, did the incident in Costs Rica happen after you became ill? Thanks

JanisB November 4, 2013 at 4:13 pm
anniekim

Really interesting article, thank you. I am a bit confused though, did the incident in Costs Rica happen after you became ill? Thanks

Yes, it was the winter of 2010-11 and I'd already been sick more than 20 years.

JanisB November 4, 2013 at 4:16 pm
BeatriceL

I took the QEESI test and scored low to moderate on the sensitivities part. However, my life has been pretty much halted by CIRS, and I scored 75 on the "effect on your life" portion, but it was due to mold avoidance, not chemical sensitivity. I can go into a mold-safe building even if it has a lot of chemical odors etc, but cannot go into an odor- and chemical-free building if it is contaminated by mycotoxins. I wouldn't stay inside a building that has odors but I have no particular reaction to it; it is an intellectual decision to not expose myself to this stuff.

Yes, it was the winter of 2010-11 and I'd already been sick more than 20 years.I

JanisB November 4, 2013 at 4:18 pm
BeatriceL

I took the QEESI test and scored low to moderate on the sensitivities part. However, my life has been pretty much halted by CIRS, and I scored 75 on the "effect on your life" portion, but it was due to mold avoidance, not chemical sensitivity. I can go into a mold-safe building even if it has a lot of chemical odors etc, but cannot go into an odor- and chemical-free building if it is contaminated by mycotoxins. I wouldn't stay inside a building that has odors but I have no particular reaction to it; it is an intellectual decision to not expose myself to this stuff.

Interesting. It's quite possible that the hypersensitivity that arises from mold is a different mechanism than the one that produces chemical sensitivity. Or that there are other factors which determine whether a person becomes TILTed to a severe level.

plant November 4, 2013 at 4:56 pm

Good article!

It's a great message – for people to prevent more severe MCS before it starts by recognizing risk of TILT.

As for whether the genes stay permanently messed up – we don't have that many people who have really managed to detox to the point of significantly decreased sensitivity, and those who do tend to take years or use very intense detox methods (IR sauna, coffee enemas, and more), so the assumption "it doesn't go back" could be true for people still being exposed but not necessarily true across the board.

(Just as many conditions that seem incurable, but could be incurable only for malnourished people, since they tend to resolve when people are getting really high quality nutrition, such as Gerson/juicing.)

I feel like my gene expression is changing from mold detox. I find that my brain feels entirely different, too. Much calmer. So I think I'm getting amygdala calming too from the detox (without having to specifically focus on amygdala retraining).

In my experience with mold avoidance and detox, I've come to think that the gene expression changes and sensitivity aren't a mistake but are probably smart moves on the part of the body. I almost never assume the body makes mistakes anymore. I don't see it as a malfunctioning body, I see it as a body trying to guide me to detox. Also, when I find things that detox me, my body grabs onto them in almost an addictive way. It knows what it wants. And I do get decreased sensitivity from detox, as well as a lot of other neurological improvements.

I'd also comment that something else I'm shocked by is the sheer volume of toxins I had in me. I've experienced all different sorts of things coming out of me at different times with different side effects, but just a massive amount of stuff. It just keeps coming. I keep having to dig deeper with deeper detox methods, but I'm still getting improvements.

I think the body was right to make me hypersensitive (to mold at least) to try to get me to detox like this. Maybe this would have been simpler before toxic mold was so rampant, and I could have just wandered away from a swamp and been "clear" easily in prehistoric times. But these days, countering the toxicity seems to involve good locations as well as tricks to speed up detox. Or at least that's what I'm doing.

plant November 4, 2013 at 4:56 pm

Just wanted to comment that if people want more information on the possible link of mold toxins and CFS, this is a great book for info on Erik Johnson's discoveries along those lines early on in the Tahoe outbreak that led the CDC to recognize "CFS":

Back from the Edge: How One Man's Discovery Brought Him From Desperately Sick with Chronic Fatigue Syndrome To the Top of Mt. Whitney in Six Months
http://www.amazon.com/dp/B00EDGEHT2

AbbyDear November 5, 2013 at 5:18 am

Great article – it fits me pretty closely. I am the model MCS patient, highly sensitive (intolerant) of chemical, food, and to some degree environmental (dust, mold, pollen). I can not tolerate most places. Among other things, pain is increased. I am quite certain circulation is restricted also, especially in chemical environments. Most doctors just do not even know this is a heelth condition to diagnose, much less treat. I do question the studies suggesting emotional/psych basis, though I do consider the brain (physiology) to be part of the problem (or could be).

Firstly, I could not follow the whole thread/articles – probably went to too many places at the same time. But just to be sure? – Janis wrote this thread, Jill wrote the Discover Magazine article, and Dr. Claudia Miller, MD was referenced quite a bit as an early advocate of this illness and TILT.

Secondly, I have a number of questions. Not sure if I can remember them all now, but I will try.
1. I would like to get proper diagosis of this illness, how does one go about doing that ?
2. Is there any bio marker tests that can be done to confirm?
3. Are there any clinics that actually do "exposure"/reaction testing to confirm this ?
4. Are there any direct blood/urine tests that detect micotoxins, biotoxins, … ?
5. What is relation to true allergy (IgE) ? do allergy shots cure? help? how can desensitizing a few environmental allergens eliminate (possibly different) response to hundreds of foods and thousands of chemicals?
6. Can they narrow this reaction down to some immune response, or one of the 5 hyersensitivity reactions (http://en.wikipedia.org/wiki/Hypersensitivity) ? Or is it completely different ? or unknown ?
7. Is there any relationship to lose of control of the immune system, e.g. low alpha-MSH, low cortisol, or cortisol resistance ? or could something be damaged by high cortisol levels, e.g. PTSD initiated illness ?
8. Does Dr. Miller, or her clinic in TX diagnose or treat this condition, or is she just in mode to make others aware of this? Is she looking for study patients ?

Thanks.

jenbooks November 5, 2013 at 11:25 am

Dr. Miller doesn't treat or diagnose. Have you heard of Planet Thrive? You might join it and find some answers there.

caledonia November 5, 2013 at 12:27 pm

You guys are making this way too complicated. It's the same mechanism that causes ME/CFS, i.e. glutathione depletion. Glutathione is the body's main detoxifier. When you don't have enough glutathione to detoxify toxins, you get symptoms. When I take methylfolate and B12, thus building glutathione, my MCS gets better. When I don't take it, it gets worse.

As to why would you get worse when camping – when you get away from the toxin, you start detoxifying it, but you haven't taken steps to rebuild glutathione. Therefore, you're depleting glutathione even more, therefore you react even more. Over time, once the toxin is detoxified enough, your glutathione is freed up to handle exposures again, therefore you don't react as badly.

Just avoiding toxins may be enough for some people to recover, but they may always have problems because the glutathione depletion is a vicious cycle i.e., glutathione depletion causes more glutathione depletion. So unless you take steps to break out of the vicious cycle, it becomes a chronic condition.

Read Rich Van Konynenburg's papers on glutathione depletion. This also fits in with Martin Pall's work. My Methylation Made Easy videos, part 1 and 2 are an easy to understand explanation of this. http://www.youtube.com/watch?v=o4uqEDK6BvM

Some people can take glutathione directly, and some people can't. The best way to rebuild it and to break out of the vicious cycle, is to do methylation treatment.

AbbyDear November 5, 2013 at 4:45 pm

I have read "Explaining Unexplained Illnesses" by Dr. Pall, and followed many of the suggestions in the Therapy chapter. Did not help, not even a little, not even for a second. I have done glutathione precursors, liposomal glutathione, glutathione IV pushes, ALA, vitamin C, E, minerals, etc. Did not help, not even a little, not even for a second. I have done liver flushes, juicing diets, dandelion-milk thistle and other herbs, and detox fasts, etc. Again, nothing helps, not even a little, not even for a second. I've done methylation supplements, for years. I have spent 10s of thousands of $, nothing helps. I think Janis, and Jill, I think mention limited effects of detox. There must be something to it however, and it may help some, but not me. It's great that some are helped by methylation and glutathione, and its worthwhile to try, but for me, i just gotta dig a bit deeper, and i need a real diagnosis and a doctor who understands MCS and ME – first need to acknowledge/understand the problem before randomly prescribing drugs….and i just really think there is more to it than just needing a supplement or two. They also have to acknowledge the difficulty and seriousness of the problem and be able to admit that they may not be able to cure this impossible illness. I also think about how if we are 100x more sensitive to things than normal, than unless we are 99.999% effective with detox, than maybe there would still remain enough to set things off. I do feel at times like i am being poisoned, but it does not really feel like a hangover/detox to me. I do feel the immune system is all rev'ed up, and reacting to everything and all the effects are difficult to describe. It has destroyed my life.

jenbooks November 5, 2013 at 5:38 pm

Abby, I did my 23andme. There are numerous genes involved in detox including liver pathways. I have a double deletion in c677t and in one of those important sod genes. Also some liver issues — slow acetylator etc. some folks who can't handle dursban ( such as Scott) may have a weak pon1 gene. If you can study your 23andme you can get some clues.

PearlGirl26 November 5, 2013 at 10:13 pm

Has anyone here with MCS and/or CFS/ME tried hyperbaric chamber treatment for detox? In theory, it seems to make a lot of sense and it's exciting to think of a treatment that does not have as many side effects as medication, but I haven't heard of many concrete success stories.

jenbooks November 6, 2013 at 5:59 am

Dr. William Rea, who is pretty controversial, does recommend oxygen during a reaction; either a small tank or concentrator. 2-5 liters a minute I think. He also has a source for ceramic masks I think. Don't know all the details.

HowToEscape? November 6, 2013 at 7:10 pm

One small quibble:

"defied the tenets of modern science by walking on hot coals"

There is a well-understood mechanism by which once can walk briskly over hot coals which have been burning for a while. It's possible to get burned if one changes the setup; one firewalk went wrong when the organizers used burning timbers, rather that charcoal which had burned long enough to form a layer of ash. Result: twenty burn cases. Ouch.

It's also possible to briefly dip a finger into molten lead and still have an intact, unburned finger afterwards. Not recommended for people with health issues ;-)

jenbooks November 7, 2013 at 6:36 am

@BeatriceL, that's likely why you were able to live in a camplite with a short period of off gassing. A chemically sensitive individual couldn't. @plant, yes and no about trusting the body. It's a complex system and can make errors.

JanisB November 7, 2013 at 10:10 am
AbbyDear

Great article – it fits me pretty closely. I am the model MCS patient, highly sensitive (intolerant) of chemical, food, and to some degree environmental (dust, mold, pollen). I can not tolerate most places. Among other things, pain is increased. I am quite certain circulation is restricted also, especially in chemical environments. Most doctors just do not even know this is a heelth condition to diagnose, much less treat. I do question the studies suggesting emotional/psych basis, though I do consider the brain (physiology) to be part of the problem (or could be).

Firstly, I could not follow the whole thread/articles – probably went to too many places at the same time. But just to be sure? – Janis wrote this thread, Jill wrote the Discover Magazine article, and Dr. Claudia Miller, MD was referenced quite a bit as an early advocate of this illness and TILT.

Secondly, I have a number of questions. Not sure if I can remember them all now, but I will try.
1. I would like to get proper diagosis of this illness, how does one go about doing that ?
2. Is there any bio marker tests that can be done to confirm?
3. Are there any clinics that actually do "exposure"/reaction testing to confirm this ?
4. Are there any direct blood/urine tests that detect micotoxins, biotoxins, … ?
5. What is relation to true allergy (IgE) ? do allergy shots cure? help? how can desensitizing a few environmental allergens eliminate (possibly different) response to hundreds of foods and thousands of chemicals?
6. Can they narrow this reaction down to some immune response, or one of the 5 hyersensitivity reactions (http://en.wikipedia.org/wiki/Hypersensitivity) ? Or is it completely different ? or unknown ?
7. Is there any relationship to lose of control of the immune system, e.g. low alpha-MSH, low cortisol, or cortisol resistance ? or could something be damaged by high cortisol levels, e.g. PTSD initiated illness ?
8. Does Dr. Miller, or her clinic in TX diagnose or treat this condition, or is she just in mode to make others aware of this? Is she looking for study patients ?

Thanks.

1. I would like to get proper diagosis of this illness, how does one go about doing that ?
I don't know the answer to this. There are physicians who treat MCS and others who treat Environmental Illness. Those who are members of AAEM http://aaemonline.org/ and ACAM are most likely to be able to help.

2. Is there any bio marker tests that can be done to confirm? Not as far as I know.

3. Are there any clinics that actually do "exposure"/reaction testing to confirm this ? Yes. This is done at Dr. Rea's EHCD http://www.ehcd.com/ as most extensive place in the country. Also done by Martha Grout in Scottsdale, by Kalpana Patel in Buffalo, and by others whose names I don't know, as some stay under the radar. Ask others in your geographic area.

4. Are there any direct blood/urine tests that detect micotoxins, biotoxins, … ?Yes, RealTime labs in Dallas tests for mycotoxins in urine and is recognized as the leader in this area of testing.

5. What is relation to true allergy (IgE) ? do allergy shots cure? help? how can desensitizing a few environmental allergens eliminate (possibly different) response to hundreds of foods and thousands of chemicals? There are different kinds of allergic reactions, and when the allergists all moved to IgE, many protested, including Dr. Theron Randolph who is mentioned in this article. You might read his book and get a better understanding of other pathways. Sterling Labs in VA does other kinds of allergy testing besides IgE using blood samples, but most physicians who follow Randolph test the patient. Miller follows Randolph in arguing that patients must be relatively clear of triggers for the testing to accurately determine their primary sensitivities.

6. Can they narrow this reaction down to some immune response, or one of the 5 hyersensitivity reactions (http://en.wikipedia.org/wiki/Hypersensitivity) ? Or is it completely different ? or unknown ?

7. Is there any relationship to lose of control of the immune system, e.g. low alpha-MSH, low cortisol, or cortisol resistance ? or could something be damaged by high cortisol levels, e.g. PTSD initiated illness ? All sounds possible. VIP supplementation, which works with MSH and cortisol and ADH, has been associated with reduced sensitivity.

8. Does Dr. Miller, or her clinic in TX diagnose or treat this condition, or is she just in mode to make others aware of this? Is she looking for study patients ? Contact her directly re study patients. She is not a clinician.

JanisB November 7, 2013 at 10:13 am
caledonia

You guys are making this way too complicated. It's the same mechanism that causes ME/CFS, i.e. glutathione depletion. Glutathione is the body's main detoxifier. When you don't have enough glutathione to detoxify toxins, you get symptoms. When I take methylfolate and B12, thus building glutathione, my MCS gets better. When I don't take it, it gets worse.

As to why would you get worse when camping – when you get away from the toxin, you start detoxifying it, but you haven't taken steps to rebuild glutathione. Therefore, you're depleting glutathione even more, therefore you react even more. Over time, once the toxin is detoxified enough, your glutathione is freed up to handle exposures again, therefore you don't react as badly.

Just avoiding toxins may be enough for some people to recover, but they may always have problems because the glutathione depletion is a vicious cycle i.e., glutathione depletion causes more glutathione depletion. So unless you take steps to break out of the vicious cycle, it becomes a chronic condition.

Read Rich Van Konynenburg's papers on glutathione depletion. This also fits in with Martin Pall's work. My Methylation Made Easy videos, part 1 and 2 are an easy to understand explanation of this. http://www.youtube.com/watch?v=o4uqEDK6BvM

Some people can take glutathione directly, and some people can't. The best way to rebuild it and to break out of the vicious cycle, is to do methylation treatment.

Not everyone is helped by restoring glutathione and methylation. I've been doing this since 2005, but got nowhere living in an environment with my primary trigger, mold. I still take glutathione in various ways daily as well as methylation supplements. Be aware that there are other major detoxification pathways in the body, such as acetylation, which is the one used for pesticides and other toxic chemicals, and this requires nutrients such as niacinamide and B1.

caledonia November 7, 2013 at 10:59 am
JanisB

Not everyone is helped by restoring glutathione and methylation. I've been doing this since 2005, but got nowhere living in an environment with my primary trigger, mold. I still take glutathione in various ways daily as well as methylation supplements. Be aware that there are other major detoxification pathways in the body, such as acetylation, which is the one used for pesticides and other toxic chemicals, and this requires nutrients such as niacinamide and B1.

Right, you have to do both – avoid the toxin and do methylation supps, as they both affect methylation. This is the thing that a lot of people don't seem to get – you will likely have to do a total program addressing all aspects that affect methylation, not just taking methylation supps and thinking it will fix everything.

You might get lucky and one aspect will be extremely helpful, but that doesn't occur for most people. So you have to do an overall assessment and treat all aspects:

1. any toxins still going in – get rid of the source of those
2. any ongoing infections – get rid of those
3. gut problems – address those
4. poorly operating methylation cycle – address that
5. still have metals despite killing gut bugs and addressing methylation (both of which will detox metals) – do further metal detox
6. you have a great deal of ongoing stress or past trauma still causing issues – address that
7. nutritional deficiencies – test for and supplement for those

I'm probably missing something, but you get the idea. All of these things affect methylation, therefore you have to do all of them to completely address methylation and get back in balance.

jenbooks November 7, 2013 at 12:17 pm

It's not at all that simple, Caledonia. 'Nuff said

Wayne November 8, 2013 at 11:07 am

Hi JanisB, and Jill Neimark,

Thanks SO much for these excellent articles. I normally don't read much at a time, but felt "fairly captivated" as I read both of your articles back to back. Your articles reminded me of an experience I had several years ago, and which I posted about on the ProHealth board. Thought I'd paste my original post here, as it seems relevant to the discussion.

Thanks again; double thumbs up! :thumbsup::thumbsup: — Best, Wayne

Originally Posted This on 5/31/07

I’ve had extreme MCS/EI in the past but I’ve improved somewhat over time. I’ve wondered a lot as to how a person could be so sensitive to such small amounts of exposure. I had an experience about a year ago that gave me some insight (for myself).

I was in the waiting room of the chiropractor/naturopath I go to who also does cranial sacral therapy. Before I knew it, his wife was spraying some “spot remover” on the carpet in the hallway. At the same time she was musing “Hmmm, I just remembered that some people can be sensitive to things like this”.

Well, about the time I started to reel from it, the doctor came out and escorted me into his office. I told him I could still smell the chemicals and I was getting sicker by the moment and getting so dizzy I absolutely had to leave.

He persuaded me to go with him into a back room that was still clear. I was very reluctant to do so because I did not want to waste a cranial/sacral session at a time when I was feeling extremely ill. I’m glad I did however, because within seconds of him putting his hands on my head, my symptoms began to wane almost immediately. Most symptoms were gone within a minute. I could hardly believe it as an exposure such as that would normally take me at least hours to start recovering from and sometimes days to get back my equilibrium.

What I learned is that the exposures I experience seem to primarily affect me neurologically. And I’ve come to believe that so many of symptoms we with CFS/FM deal with are neurological symptoms. Dr. Jay Goldstein’s drug therapy seems to have been specifically developed to alter/modulate neurological responses.

More natural therapies such as the cranial/sacral I mentioned and some of the NAET experiences others have shared seem to also modulate neurological responses. It appears in most cases that these all seem to be palliative measures and have to be continued indefinitely to sustain any improvement we may experience. My goal is to try to correct what is making us have such extreme neurological responses in the first place. To that end, I am slowly starting the methylation cycle block therapy.

Regards, Wayne

P.S. I had an experience a couple of months ago where some cooking done in the house was bothering me on a particularly sensitive day for me. Hours and hours later when I no longer was smelling it at all in the house, I kept waking up in the night smelling it over and over again. Felt like another indication to me that this is primarily neurological, with "imprints" being able to linger around long after one removes themselves from the exposure.

caledonia November 12, 2013 at 2:40 am
jenbooks

It's not at all that simple, Caledonia. 'Nuff said

@jenbooks I didn't say that application of the glutathione depletion hypothesis to real life treatment was simple, if that's what you mean. It's pretty tricky for most people, including myself. There is still much to learn.

Or are you saying that the glutathione depletion hypothesis is incorrect in regards to MCS and/or mold sensitivity?

My point was, assuming glutathione depletion hypothesis is correct, that there is already one all encompassing hypothesis that explains all the things in the article, which the article never mentioned.

So assuming it's correct, it gives you a framework of why things are the way they are, and how to proceed forward, instead of only understanding pieces but not the big picture, or wandering around randomly trying out things hoping they work. This is huge.

caledonia November 12, 2013 at 2:56 am
JanisB

Not everyone is helped by restoring glutathione and methylation. I've been doing this since 2005, but got nowhere living in an environment with my primary trigger, mold. I still take glutathione in various ways daily as well as methylation supplements. Be aware that there are other major detoxification pathways in the body, such as acetylation, which is the one used for pesticides and other toxic chemicals, and this requires nutrients such as niacinamide and B1.

Ben Lynch has two new videos where he talks about glutathione, which is relevent to this thread.

Folate and Methylation Defects and Metabolism in 2013: Clinical Breakthroughs (Part 1 – Presentation)

7 minute mark: Too much glutathione supplementation causes feedback inhibition
48 minute mark: explains how NAD (niacin) helps convert oxidized glutathione to reduced glutathione and why this is important

MTHFR and Methylation Advancements: Q and A with Dr. Lynch (Part 2 – Question and Answer Session)

29 minute mark: don't supplement with glutatione if you're deficient in NAD as it will just make oxidized glutathione. If you're deficient in NAD, you may take a glutathione test and have the results come out ok, when you're actually deficient in glutathione. This is because the low NAD masks the deficiency.

AbbyDear November 12, 2013 at 4:45 pm

@JanisB Thanks for the answers.

jenbooks November 13, 2013 at 1:07 pm

Caledonia, I'm saying….

1) Glutathione depletion is only one cause of inability to detoxify (or inadequate detox)
2) Methylation is such a basic function that you cannot necessarily predict from the few polymorphisms being studied, whether a person needs the basic methylation supplements that are so popular today, or whether they will react adversely. Methylating genes and viruses is both good and bad. For instance, you don't want to overmethylate your tumor suppressor genes
3) So much is yet to be learned, and when a doctor sells his own supplements I raise an eyebrow as to his objectivity
4) Lots of other pathways can be involved in sensitivity to chemicals or poor detox. Pon1 for pesticides, SOD inside the mitochondria, various liver pathways and many more.
In addition, chronic infections may be playing a role and once treated, detoxification might resume

South December 2, 2013 at 11:15 am

I'm not sure about something: based on this article, Dr. Miller didn't seem to have any recommendation as to what can be done about MCS (granted, it's only one article, which cannot replace a doctor's visit, but I would think there might have been some hints in her wording as to whether she has any answers to the problem, if she does have any answers). If she is just trying to define the existance of mcs, ok, I guess that's something for the future of getting the disorder recognized by mainstream. I just wish the article had been clearer as to whether she does anything for it.

I have low grade mcs — enough to have extreme empathy for those who have it worse than I do – and if I get frustrated at the lack of doctor interest in solving the problem, then I'm sure those who have it worse than I do must get frustrated as well. I went to an alternative MD once who discussed his awareness of the existence of the problem, but again, had no answers at all as to what to do about it, and I left his office completely frustrated.

Wayne December 2, 2013 at 11:40 am
South

I went to an alternative MD once who discussed his awareness of the existence of the problem, but again, had no answers at all as to what to do about it, and I left his office completely frustrated.

Hi South,

I just ran across this 2 1/2 min. video a couple days ago as I was researching deep liver and gallbladder cleansing. This woman claims to have completely recovered from MCS, and now runs a business (Optimal Health Network) trying to help others do the same. I haven't had a chance to persue her website yet, but thought I'd at least post a link here while it's on my mind (never know how long that will last). :rolleyes:

How to Heal from Multiple Chemical Sensitivities

jenbooks December 8, 2013 at 10:46 am
South

I'm not sure about something: based on this article, Dr. Miller didn't seem to have any recommendation as to what can be done about MCS (granted, it's only one article, which cannot replace a doctor's visit, but I would think there might have been some hints in her wording as to whether she has any answers to the problem, if she does have any answers). If she is just trying to define the existance of mcs, ok, I guess that's something for the future of getting the disorder recognized by mainstream. I just wish the article had been clearer as to whether she does anything for it.

I have low grade mcs — enough to have extreme empathy for those who have it worse than I do – and if I get frustrated at the lack of doctor interest in solving the problem, then I'm sure those who have it worse than I do must get frustrated as well. I went to an alternative MD once who discussed his awareness of the existence of the problem, but again, had no answers at all as to what to do about it, and I left his office completely frustrated.

She's not acting in the capacity of a physician, but a researcher trying to establish the validity of the condition. Were she to start offering solutions it would be very problematic–since she isn't treating patients. She just can't do that. If you want to see good research by an MD in a university setting, google Stephen Genuis (he's Canadian) and look at his treatments.

Dufresne December 10, 2013 at 10:14 am

Thanks for the great blog Janis!

We have a lot in common. I'm going to PM you with some of the things you mentioned that really resonated with me. It's important for us to post when approaches that are not widely accepted by our community, but have such relevance for so many of us, are incredibly helpful and reveal so much about the disease. The fact that extreme mold avoidance has helped most people that have tried it with the cardinal symptom of PEM deserves a whole lot more attention than it has received.

Allyson December 11, 2013 at 11:36 pm

NOt read all but allergies are very common in EDS – Ehlers- Danlos Syndrome
for unknown reasons

EDS has many symptoms similar to ME and so far many that I know of – over 100 – have been re- diagnosed with EDS after and ME/cfs diagnosis more info here

http://forum.notcrazy.net/index.php?topic=9571.0

cheers

Previous post:

Next post: