October 2011-- During the next six months, The Canary Report will be dedicated solely to me sharing my experiences while on the Gupta Amygdala Retraining program for MCS. If you'd like to be notified by email when blog entries are made, please subscribe in the right hand column below. During the entire six months, this blog will remain online but Our Canary Report network and forum will be offline and inaccessible to our members. Thank you for all your support! Aloha, Susie
 

I told the doctor I had to get out of the room and away from anyone with a fragrance on and yanked off all the electrical leads, grabbed my bag and pushed my way out of the exam room with one objective… get fresh air.

Letter to the Editor by Phil Bartow.

My message describes my having to battle my way out of the ER at a hospital in Renton, WA, because technicians wore deodorant or other sources of fragrance. Fragrances restrict/stop my breathing within minutes. When I detect a fragrance I have to leave the environment. People are not allowed into my home if I can “smell” them. The experience is more than olfactory but a visceral respiratory experience that happens before I smell it.

I will try to put my experience on my website at http://www.bartowassoc.com/fragrance. Some of it is “political” to the extent I want the hospital administration to make some changes.

I told the doctor I had to get out of the room and away from anyone with a fragrance on and yanked off all the electrical leads, grabbed my bag and pushed my way out of the exam room with one objective…get fresh air. I staggered I tried to keep one eye the floor pattern for navigation. Several people grabbed me at different times and tried to restrain me. This severely aggravated my deteriorated right shoulder but I was so stressed the pain did not immediately register.

In my struggling down the corridor I said a number of times I had to get away from deodorant and if I can smell you to get away. I heard a number of people say “we all wear deodorant”.

I heard comments in the ER waiting room to the effect that people thought I was dying. I was struggling for every breath. By the time I got to the front door I had pulled off the gown managed to get a pullover over my head. With my eyes closed going through the door I bumped into somebody, I opened an eye and saw boots and smelled the security guard. I opened my eyes enough to see the guard and heard some one say “let him go”. I turned my head and saw the doctor and one of the nurses from the examination room.

I staggered away from them and collapsed on a steel car restraining post long enough to catch a breath. I then moved on to find a bench in front of the hospital entrance, where I could put down my bag, take off the pullover (snow on the ground and very cold), pull a tee shirt on and then the pullover. My breathing improved. I was breathing clean air…

Also, with May being proclaimed by the Governor to be MCS Awareness month I am hoping to get the local newspaper to invite stories from readers about their encounters with MCS like experiences. I have emailed RiteAid pharmacy headquarters to encourage them to establish fragrance free product aisles. I find it a nuisance to have to sort through all the bottle and box labels to see which is fragrance free. A marketing opportunity for stores.

Thanks,
Phil Bartow

 

Does Multiple Chemical Sensitivity have anything to do with the sense of smell?

What role does the sense of smell play in MCS?

Q:

What role does our sense of smell and the olfactory system play in Multiple Chemical Sensitivity? Do people with MCS have a heightened sense of smell?

Thank you,
A Nosy Canary

A:

Aloha Nosy!

I am often asked these questions. The first point I always clarify is that MCS does not center on our sense of smell or an olfactory response. To understand this better, let’s review the cause of MCS.

Current research shows that MCS is initiated by a previous toxic chemical exposure from one or more of seven classes of chemicals, notably organic solvents (volatile organic compounds or VOCs), three classes of pesticides, mercury, and/or carbon monoxide. Toxic mold exposure also is reported to initiate MCS, and we find this cause most often in people with MCS who have lived or worked in “sick buildings” that have a toxic mold infestation (Pall, 2009).

So the first thing to understand is that despite many descriptions of MCS that you may find on the Web and elsewhere saying that the olfactory system has a central role in MCS, there is no evidence supporting that claim and in fact, there is considerable evidence against such a role. There are cases of MCS in people with no sense of smell– in fact we have several members of our community who have no sense of smell and also have severe cases of MCS.

Many people with MCS report symptoms of a chemical exposure without any chemical odor. I personally have had this happen: while sitting in my livingroom one day I was overcome with feeling ill, dizzy with loss of cognitive ability, only to discover the neighbor was spraying some sort of herbicide that had no odor.

There are three studies of MCS patients where a nose clip was used to block off access of odors and the MCS patients still reacted to toxic chemicals (Joffres et al, 2005; Millqvist and Lowhagan, 1996; Millqvist et al, 1999).

This is not to say that the olfactory system is never impacted in people with MCS, but rather that it does not play a central role in cause.

To explain this, I’d like to refer to the work of MCS researcher Martin Pall, professor emeritus of biochemistry and basic medical sciences at Washington State University. Pall’s research on MCS is widely published in books and articles, the most recent of which is a chapter in the authoritative international reference manual for professional toxicologists, General and Applied Toxicology, 3rd Edition, 2009.

Pall’s review of the literature and other research he’s conducted over the past eleven years show the probable cause of MCS is a biochemical mechanism involving nitric oxide (NO) and peroxynitrite (ONOO-), what Pall calls the NO/ONOO- cycle. Pall describes MCS, also known as chemical sensitivity and toxicant-induced loss of tolerance (TILT), as a disease initiated by toxic chemical exposure, leading to brain injury that produces high level sensitivity to the same set of chemicals that cause the disease. To get a little deeper into the science: all seven classes of chemicals mentioned at the top of my answer are thought to act indirectly to increase the activity of NMDA receptors, which are glutamate receptors for controlling synaptic plasticity and memory function. This activity, in turn, leads to rapid increases in intracellular calcium (Ca2+), nitric oxide, and peroxynitrite (ONOO-), acting to greatly stimulate the NO/ONOO- cycle. That cycle is what causes our myriad symptoms.

So how does this impact our olfactory system? Do people with MCS have a heightened sense of smell? Let’s ask Martin Pall.

“MCS is not primarily a defect in the olfactory system,” Pall says. “But when the olfactory system is impacted by the NO/ONOO- cycle it will impact the sense of smell. This is because both the NMDA receptors and nitric oxide have roles in the olfactory mechanism. However what impact the cycle has, varies from person to person, possibly depending on the severity of the cycle in that region of the body. Some people report being much more sensitive to odors but others are anosmic, completely devoid of the sense of smell.”

Aloha,
Susie

Photo credit.

 

Many of the resources used were environmentally-friendly, but it should be noted that “green” does not always mean “chemically safe.”

By guest blogger Catherine Ockey

Background

In the spring of 2009 we discovered a leak in a shower faucet in our home. Upon further investigation it was determined that water had been leaking down an inside wall for some time and had caused damage to the bathroom walls and subflooring. The process of repair and reconstruction occurred over a three-week period in the fall of 2009. Before the actual work began, however, I did a lot of research into chemically-safe (or safer) building products and found a contractor willing to follow my instructions explicitly. I am happy to share more details of my experience with anyone by phone or through email. Following is a summary of what we did.

Contractor

We found a contractor with experience in environmentally friendly building practices. He had previously built an entire house for a person with MCS, so he had some familiarity with the issues. However, every person with MCS has slightly different issues, so I micro-managed the entire project myself from start to finish. I let the contractor know upfront that this is how it would be done and also had this written into our contract with him.

Resources

Books

Prescriptions for a Healthy House, 3rd edition: A Practical Guide for Architects, Builders & Homeowners by Paula Baker-Laporte, Erica Elliott and John Banta. (Both my contractor and I had a copy of this book. It was our most valuable resource.)

The Healthy House by John Bower. (I have an older edition of this, but I believe it has been updated.)

Magazines

Fine Home Building
Green@Home
Mother Earth News

Web sites

Care2 Green Living
Safer Building

Various manufacturer’s Web sites

Lassen Technologies
Ecohaus
Healthy House Institute
Guide to Less Toxic Products
Safe Shopper’s Directory: Building Materials

Many of the resources I used were environmentally-friendly, but it should be noted that “green” does not always mean “chemically safe.” Ultimately, it was a matter of finding what materials would work for me and which ones were readily available. Contractors like to buy materials from known sources and don’t like to work with unfamiliar materials, but I maintained the role of “boss” through the entire project.

I also have to say that I left the house for the three weeks of actual construction and probably should have stayed away another week or two after that. I went to stay with a daughter in another state but carried a cell phone with me (along with my notebook of project details) and had several conversations every day with the project manager who was on the job here in my house. A sign was posted on the outside of the house concerning the chemical issues and all workers were required to come to the site fragrance-free (not even any deodorant). No smokers worked on-site.

When choosing materials we went for the least toxic with the shortest outgas time. We used interior grade plywood for the subflooring (which had been sitting outside for over six months, so had already outgassed significantly) and then covered it with 11-inch square ceramic tile, which formed an efficient barrier between the bathroom and the crawl space underneath. We used a no-voc grout that did not have to be sealed. The shower was also done in ceramic tile, as were the new laundry room and smaller bathroom that adjoined the main bathroom.

All paint was no-voc and there were no new wood products (other than the subflooring) introduced into the project.

The old vanity in the main bathroom had to be removed, but it was preserved and re-installed. The old vanity in the smaller bathroom could not be preserved, so we replaced it with a ceramic pedestal sink. For the mirror in the small bathroom, we found a frame made out of recycled barn wood, no finish on it, and had a local glass company cut a piece of mirror to fit it. There were some other things we did with fans and ventilation to prevent future problems.

My husband did remain in the house during the project, but lived in a back room that is separate from the rest of the house. The part of the house that was torn apart was draped off with previously outgassed material and the living room (the only room that couldn’t be completely closed off from the project) was emptied and draped with old cotton sheets. We ran a large air purifier 24/7 during the project and my husband sprayed a mixture of GSE (grapefruit seed extract) and water (20 drops GSE to 2 cups water) throughout the house at the end of each day.

Mold treatment: all moldy material was removed from the house and replaced with chemically-safe materials. A mixture of tea tree oil and water (2 t oil to 2 cups water) was sprayed on all surfaces multiple times throughout the project to kill any residual mold spores.

Results

I had some (relatively small) reactions to the materials when I returned home. I think if I had stayed away another couple of weeks I would not have had any reaction at all. This was a huge project that consumed a lot of time and money, but our house is so much healthier as a result. We were able to get a home equity loan to cover the cost. Unfortunately, it doesn’t look like our homeowners’ insurance will reimburse us for any of it, but we are still fighting that battle.

This is just an overview. I am happy to share details with anyone who is interested.

 

The story of my life was published today, it would have been nice if they got it right.

Post by Linda Sepp.

linda-sepp1The Star reports on my housing situation:

A victim of her own environment: Linda Sepp fought being evicted because of her allergies. But now she’s being poisoned at home.

linda1

To read the article, click on photo to enlarge.linda2

And here is my Letter to the Editor in response:

I’m really disappointed by these articles.

The reporter had all the information, including letters from doctors about my situation and medical need for “safe” housing, which does not exist and should be provided by the health care system for people who are severely chemically injured as a primary part of our required health care.

And how the landlord has placed impossible to overcome obstacles into his seemingly generous offer, and that I owe the rent money because the landlord moved my mother out from the downstairs unit with an offer she couldn’t refuse, while knowing that I could not afford it here alone.

And how the province is refusing to provide the type of assistance one would expect from a social safety net, that I almost froze to death here as a result, that I have no safe warm clothing to wear because I cannot afford chemical free safe clothing, which is another prescription from my doctors, or wash it here without whole house water filtration.

Also, that Martin Pall’s paper about Multiple Chemical Sensitivities / Environmental Sensitivities being caused by toxic chemicals, and the info about it in the Toxicology text with all kinds of peer reviewed documentation debunking the industry line about MCS/ES being a psychological condition.

The articles also completely minimized my symptoms, which are completely disabling, and neglected to mention the Human Rights Commission’s recognition of the disability.

Other relevant links are below:

A victim of her own environment.

A poisoned home life: Woman with environmental sensitives struggles to find safety.

The Canadian Human Rights Commission Policy on MCS/ES.

The Medical Perspective on Environmental Sensitivities by: Margaret E. Sears (M.Eng., Ph.D.).

The Housing Challenge in MCS.

Toxic chemicals found in common scented laundry products, air fresheners.

Dr. Steinemann’s research: “Fragranced consumer products and undisclosed ingredients.”

Synthetic chemicals on tap: A new USGS study finds low levels of pesticides and fragrances in drinking water.

When Neighbours Smoke: Exposure to Drifting Second-hand Smoke in Multi-unit Dwellings.

NOTE: fragrance chemicals and other VOC’s migrate in exactly the same ways.

Pollution & air quality – Indoor air quality – Scents.

Health Care Without Harm and Cleaners, Pesticides, and Fragrances: Global Overview.

General and Applied Toxicology, 3rd Edition, Chapter 92: “Multiple Chemical Sensitivity: Toxicological Questions and Mechanisms,” by Martin L. Pall:

Breakthrough study on Multiple Chemical Sensitivity shows MCS is an epidemic caused by toxic chemicals; peer-reviewed paper is published in prestigious toxicology reference work.

A major paper on Multiple Chemical Sensitivity by Professor Martin L. Pall (at left) is to be published Oct. 23 as chapter 92 in a prestigious reference work for professional toxicologists, General and Applied Toxicology, 3rd Edition (2009, John Wiley & Sons). Multiple Chemical Sensitivity (MCS) is also known as chemical sensitivity, chemical intolerance, and toxicant-induced loss of tolerance, with this last name emphasizing the role of chemicals in initiating cases of this disease. Pall’s paper, entitled “Multiple Chemical Sensitivity: Toxicological Questions and Mechanisms,” establishes five important facts about MCS:

1. MCS is a stunningly common disease, even more common than diabetes. This has been shown in a series of nine epidemiological studies from the United States and one study each from Canada, Germany, Sweden and Denmark. In the U.S., approximately 3.5% of the population is affected by severe MCS, with much larger numbers, at least 12% of the population, being moderately affected. MCS is, therefore, a very large international disease epidemic with major implications in terms of public health.

2. MCS is caused by toxic chemical exposure. Cases of MCS are initiated by exposure to seven classes of chemicals. These include three classes of pesticides and the very large class of organic solvents and related compounds. In addition, published studies implicate mercury, hydrogen sulfide and carbon monoxide as initiators. All seven of these classes of chemicals have been shown in animal studies to produce a common response in the body, excessive activity of a receptor in the body known as the NMDA receptor. Furthermore animal studies have demonstrated that chemicals belonging to each of these seven classes can have their toxic responses greatly lowered by using drugs that lower this NMDA response. Because excessive NMDA activity is implicated in MCS from other studies, we now have a compelling common response that explains how such diverse chemicals can produce the disease that we call MCS.

3. The role of chemicals acting as toxicants in MCS has been confirmed by genetic studies. Four such studies have shown that genes that determine the rate of metabolism of chemicals otherwise implicated in MCS, influence susceptibility to becoming ill with MCS. These four studies have been published by three research groups in three countries, the U.S., Canada and Germany, have collectively implicated six genes in determining susceptibility to MCS. Each of these six genes has a role in determining the rate of metabolism of MCS-related chemicals. The German studies by Schnakenberg and colleagues are particularly convincing on this because of the extremely high level of statistical significance of their studies implicating four of these six genes. There is only one interpretation for the role of these six genes in determining susceptiblity to MCS. It is that chemicals act as toxicants in initiating cases of MCS and that metabolizing these chemicals into forms that are either less or more active in such initiation, influences therefore, the probability that a person will become ill with MCS. It is clear, therefore, that MCS is a toxicological phenomenon, with cases being caused by the toxic response to chemical exposure.

4. We have, a detailed and generally well supported mechanism for MCS. This mechanism explains both the high level chemical sensitivity that is the most characteristic symptom of MCS, as well as many other symptoms and signs of this disease, can be generated. This mechanism is centered on a biochemical vicious cycle, known as the NO/ONOO- cycle, which interacts with other mechanisms previously implicated in MCS, notably neural sensitization and neurogenic inflammation. These act locally, in various tissues of the body, to generate local sensitivity in regions of the brain and in peripheral tissues including lungs, upper respiratory tract and regions of the skin and the GI tract. Because of this local nature, different MCS patients differ from one another in their sensitivity symptoms, because the tissues impacted differ from one patient to another. In addition to the evidence discussed above, this general mechanism is supported by various physiological changes found in MCS and in related illnesses, by studies of MCS animal models, by objectively measurable responses of MCS patients to low level chemical exposure and by therapeutic responses reported for MCS and related illnesses.

5. For over 20 years, some have falsely argued that MCS is a psychogenic disease, being generated in their view by some ill defined psychological mechanism. However this view is completely incompatible with all of the evidence discussed earlier in this release. While such incompatibility is more than sufficient reason to reject these psychogenic claims, the MCS toxicology paper lists eight additional serious flaws in the psychogenic arguments. There is a long history of false psychogenic claims in medicine, where such diseases as asthma, autism, Parkinson’s disease, ulcers, multiple sclerosis, lupus, interstitial cystitis, migraine and ulcerative colitis have been claimed to be generated by a psychological mechanism. The 2005 Nobel prize in physiology and medicine was give to Drs. Robin Warren and Barry Marshall for showing that ulcers are caused by a bacterial infection, and are not of psychogenic origin. It is clear, now, that MCS is physiological disease initiated by toxic chemical exposure that has been falsely claimed to be psychogenic.

Martin L. Pall is Professor Emeritus of Biochemistry and Basic Medical Science at Washington State University.

He is located on Pacific time in the U.S. and can be contacted at: 503-232-3883 and at martin_pall@wsu.edu. His web site is: thetenthparadigm.org.

Linda Sepp

 

Reporter misses the whole problem of toxic chemicals, calls illness “bizarre.”

My Fox Philly reports a woman exposed to toxic mold in her attic develops Multiple Chemical Sensitivity and is forced to live in a tent in her parents’ back yard. The sloppy reporter calls the woman’s illness “bizarre” and doesn’t even bother finding out the correct name of Multiple Chemical Sensitivity. And then, to add insult to injury, the reporter doesn’t clarify the difference between “odors” and fumes from toxic chemicals.

Doctors were perplexed when a healthy young woman from South Jersey developed a bizarre illness. Ordinary household odors make her so sick that she is living in a tent in her parent’s backyard.

Link to full story.

 

There is currently a movement away from use of chemicals, pesticides and fungicides and a person must consider one consequence of this trend may be to actually increase the likelihood of more exposures to mold.

HEIRS Environmental Research Blog reports that trends in using less toxic chemicals in the home may result in increased mold problems.

There is currently a movement away from use of chemicals, pesticides and fungicides and a person must consider one consequence of this trend may be to actually increase the likelihood of more exposures to mold.  We have made our opinions known on the use of chemicals in home and other places quite clear and we are not going to discuss it here. However, we mention it because it provides a good lead in for the true purpose of this blog.  In one of the most recent studies it was noted that determining a proper risk assessment must take into account the pros and cons of using more holistic measures for food production. Food is the most common mode of infection by mold and mycotoxins and for this reason one team of researchers set out to identify the relative toxicity of mycotoxins as compared to fungicides that are used on crops to combat them.

In this study risk assessment models were used. For the first, data was collected according to a probabalistic risk assessment which showed that neither of the two mycotoxins, deoxynivalenol (DON) and zearalenone (ZEA) or the two fungicides, spiroxamine (SPI) and tebuconazole (TEB) exhibited any impact on human health in terms of the model used. As the author describes, the model of Individual Margins of Exposure (IMoE) served as the basis for the compounds in populations and effects.  The researchers reached a conclusion from this study taking the IMoE data into account that the mycotoxin deoxynivalenol had the potential to cause the most adverse health effects of all of the compounds tested. (Muri, Nielson)

Link to full report

Feb 232009
 

It’s all about the choices we make: Good choices are good for our health and good for the planet.

Rachel, the mother of five, takes us on a tour of her house, and the choices that she and her family have made in order to live more environmentally conscience lives.

Video produced by James Shelley.

 

Who’s chirping about Multiple Chemical Sensitivity?

faucetIn a letter to the editor at The Sun Times, C. D White of Owen Sound, Canada, argues against fluordation of the municipal water supply.  After discussing how difficult it is to get away from fluoridated water, he asks: How do people with a chemical sensitivity cope?

A master’s student in the graduate school of journalism at the University of Western Ontario is working on a television documentary about Multiple Chemical Sensitivities/Environmental illness. He’s located in London, Ontario and is looking for subjects who live in and around the area, but would be willing to travel up to 2 hours in order to film.

Linda at ChemSense writes about an excerpt from a letter to invitees of the Disability Power and Pride Inaugural Ball asking attendees to “refrain from using perfumes or other scented products so that those among us with chemical sensitivities can enjoy the evening.”

Derval Dunford’s recovery from post traumatic stress disorder and Multiple Chemical Sensitivity inspired her to completely re-evaluate and change her life, culminating in Ireland’s first meditation album, titled Sui, featuring a unique range of guided meditation and relaxation sessions from five to 20 minutes.

CNN Money reports on a new website offering green cleaning products, links and Information on environmentally friendlier lifestyle choices. The new eco-friendly company claims they carry a line of products dedicated to people with allergies, asthma and multiple chemical sensitivities.

And from three canaries in the blogosphere:

Mokihana at VARDOFORTWO gives an update on construction of her tiny handcrafted MCS-safe trailer home or vardo. “Building VARDOFORTWO with gentle to the Earth materials is our primary motivation,” she writes. “Building this mobile tiny home with awareness for the chemical sensitivities that challenge me is an equally important motive.”

Jill at Building a Healthy House writes about love and loss with MCS. In her post titled Izzy gets two teeth and we all get a bad cold, Jill writes about the loss to mold of her journals on her daughter’s life. “Well,” she writes, “so now I’ll just post things on a blog for her, in case she does care, because I have finally learned that with MCS and mold sensitivities, you don’t keep anything on paper.”

Betty Jo at Digi Scribbles writes about a week’s delay in moving into a new apartment while she waits for the paint to dry.

Photo by Peppysis

 

If mold results from conditions such as structural defects or inadequate drainage, then the landlord is responsible.

Mold growing on wall.As a follow-up to the last post about the new movie Black Mold Exposure, here’s a column by Dennis Rockstroh at the Mercury News about landlords’ responsibility to tenants when a mold infestation occurs.

Q My granddaughter lives in an apartment in San Jose where they are forced to clean with bleach at least every other day because of a severe mold problem throughout the entire place. What are their rights as to moving immediately without giving notice for a month? How can they discover if their health has been compromised since living there? Do they have the right to sue the manager for extreme neglect or indifferent endangerment? I’m a worried grandma and would appreciate your help. They are newlyweds and we are very worried about them.

Shirley Johnson
Santa Clara

A First things first, Shirley. Your granddaughter should check with her doctor to make sure this is not causing health problems. The rest of it gets a little more complicated.

I checked with Martin Eichner of Project Sentinel at (408) 720-9888. He said that while significant mold infestation can cause serious problems for both the tenants and the landlord, the law does not require landlords to get rid of it — unless they are to blame.

Eichner said that if the mold is a result of the tenant’s failure to properly maintain the cleanliness or ventilation of the unit, the landlord has no responsibility to the tenant. If the mold results from conditions such as structural defects or inadequate drainage, then the landlord is responsible.

“The next problem results from the lack of clear remedies to remove mold. ‘Mold’ actually consists of a number of different organisms and various ‘experts’ often disagree about the appropriate process for its removal. Many insurance carriers refuse to insure landlords for repairing mold damage,” Eichner e-mailed me.

On the question of moving out, it depends on the lease. Or, if it’s month-to-month, your granddaughter would have to give a 30-day notice or pay for the apartment for the 30 days unless it is rented.

“The only justification for leaving early without paying the full 30 days, or for leaving before a long-term lease has expired, is clear evidence that the infestation was due to the landlord’s fault combined with some medical opinion supporting a conclusion that staying would constitute a serious health threat to the tenants,” Eichner said.

As far as a lawsuit goes, that is always a possibility.

Meanwhile, in addition to seeing a doctor, your granddaughter might also want to contact the city’s code enforcement office to see if the mold is the result of code violations.

Link

Photo by Wendy Brolga

 

Yesterday’s post on President-Elect Obama‘s request for input on Health Care inspired many of you to write him about Multiple Chemical Sensitivity. Bravo! Like true canaries, you are out front sending your messages of warning and need.

I’d like to post the letters if you would like to share. If you’ve saved a copy, send to me via email to susie(at)thecanaryreport(dot)org.

MissyMissy Gluckman (at left) wrote me this morning with a copy of her remarks. The Canary Report has been following Missy’s struggle with severe illness and MCS brought on by toxic mold exposure at her place of work. Here are Missy’s remarks to President-Elect Obama:

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