Some Promising News

I first read about Dr Martin Pall from CatherineWO at Breathez. Dr Pall is Professor Emeritus of Biochemistry and Basic Medical Sciences at Washington State University. His research has shed new light on the causation of MCS, Chronic Fatigue Syndrome, Fibromyalgia and Post Traumatic Stress Disorder. His research also applies to Gulf War Syndrome which he says has been shown to be a combination of the four.

I was first intrigued by his study for a couple of reasons. First, I’ve always suspected that, somehow, all of these diseases were related, though I had no idea how they were related. And second, it explains some of my own observations regarding the additive effect of products that trigger problems for me. As my disease has progressed, I’ve developed sensitivity to many things, including many foods. A prime example of additive effect is pecan pie. Nuts, for whatever reason, are often a migraine trigger. (Migraines are the primary symptom that I have, and I’ve long suspected that many migraine sufferers have a form of MCS.) Two years ago on Thanksgiving, I had pecan pie with our meal – around noon. No migraine. But, later in the evening I had a second piece (hey, it only happens once a year) and a migraine resulted. Hence, the additive effect theory.

As you read through Dr Pall’s website, you’ll find that he has developed a regimen of vitamins and supplements to treat these diseases. He lists this information in detail and mentions that there have been many who have benefited from his regimen.

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Asbestos Toxicity

The health issues caused by asbestos are yet another demonstration of the problems of our modern world. Too often modern man jumps on something new and uses it everywhere, without ever knowing what the long-range effects might be. Long ago, long before I knew I had health issues related to the chemicals in fragrances (when I thought it was just an allergy), I learned about the Great Law of the Iroquis and thought if was something that should always be practiced:

“In every deliberation, we must consider the impact on the seventh generation… even if it requires having skin as thick as the bark of a pine.”

Indeed, we are not patient enough to wait and see what effect something will have 7 generations later, but think how much better a world we would be in if we were that patient.

Some more about abestos: Although all forms of asbestos are toxic, the degree of toxicity varies with both the asbestos type and its particular state. The most toxic form is fibers of less than 8 micrometers in length and 0.25 micrometers diameter. These stay in the lungs whilst shorter fibers are expelled and larger ones do not damage lung cells. Although asbestos has now been banned, there remains much of it in the environment, particularly in factories, mines and even domestic buildings. We must be very careful that this is disposed of properly.

Asbestos was widely used before 2000 in the construction of buildings because of its many properties. It is a good thermal insulator, hence it was used to lag pipes and protect structural steelwork. It is also an excellent electrical insulating material. Moreover, it is highly resilient and does not degrade. But, unfortunately, it can also be deadly. Many people are now dying from past exposure to asbestos and will continue to do so unless action is taken. It is now illegal to use asbestos but countless tons of it were used in the past and much of it is still in place. It does not pose any risk as long as it is in good condition; however, if it is disturbed or damaged then it can become very dangerous for health because the asbestos fibers released into the air are prone to causing breathing problems for people who inhale them. Once the asbestos fibers are inhaled or swallowed, they tend to lodge in the lining around the lungs, heart or abdominal cavity and go unnoticed for many years. Ultimately, they will cause scarring and cell changes that can become a malignant cancer known as Mesothelioma. Anyone who thinks they have inhaled harmful asbestos fibers while performing their job may be entitled to make a claim for asbestos compensation.

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Another Sad Story

I got this email last week as a comment on my web site Fragrance Free World. It just seems lik such a cruel world we live in, doesn’t it?

One thing intrigued me. I’ve never really read about a connection between HPV or other vaccines and MCS. Have you?

Over the last 2.5 years, I have become extremely sensitive to fragrances and have had MAJOR health problems because of them. Up until last October, I’d had migraines on an almost daily basis because of fragrances. For the longest time, my doctors thought it was allergies…. in fact, I’d been on allergy medicine since I was 10 years old… I finally went to an allergist to figure out what it was I was allergic to and it turned out that I wasn’t alleric to anything…. not ever dust! So, after listening to my symptoms (constant sever headache, nausea, dizziness, confusion, easily sicken by motion, poor balance, EXTREME sensitivity to smells) my allergist thought I had transformed migraines and sent me to see a migraine specialist. Last October, I saw the migraine specialist and he prescribed me Topamax (anti-seizure med.) which he said was supposed to raise my tolerance to stimuli! It has made a world of difference. I can’t and NEVER will be able to w ear perfume, or use scented anything and neither will my husband and those coming in close contact with me, but at least now I don’t get an instant headache from every little whiff of fragrance like I used to.

I really don’t understand where all this came from. I myself used to love wearing perfume and loved bath and body works products, but now I couldn’t hate them more! Sensitivities to fragrances run in my family, so I’m sure it has something to do with that, but I think two other things (one huge one in particular) may be to blame for my sudden problems. 1. I moved into central WI to go to school… there are TONS over paper mills in the part of the state. Some days I can hardly handle the smell…. I sometimes wonder if being exposed to those chemicals on a daily basis triggered my problems because I never experienced them until I moved and went to college…. 2. Recently, I was given the 3 HPV shots and shortly after those is when I started having problems…. My dad had a similar problem after getting a flu shot which has had lasting effect on him as well…. there is no way to ever prove the HPV shot had anything to do with my becoming the way I am now, but it seems awfully
coincidental to me.

I feel like my sensitivities I have to fragrances and the migraines I get from them have taken over my life! Every single place I go is scented. It has gotten so bad that I have to sniff the keyboard and mouse in the school computer lab to make sure nobody before me has used scented lotion…. I have to sniff chairs that have fabric on them… I carry peppermint oil around with me to put under my nose ever time I smell perfume, cologne, fabric softener to drown out the smell to avoid getting a migraine and I end up applying the peppermint oil until my nose AT LEAST 10 times a day, I have to bring my own sheets when I stay in a hotel, I can’t go shopping anymore (which was one of my fav. things to do) because the mall REEKS of perfume, I can’t sit near people in movie theaters or ball games, I am hesitant to ride in other people’s cars or go into other people’s houses in the fear that it will either reek of smoke, air freshener, or the new car smell….. the only place I feel
I can be at ease and not always up tight is at home…. and up until I got married, I lived with roommates that were VERY insensitive to my requests of them not using fragrances in the house… so at that point even my house was not a safe haven.

I’ve dealt with people telling me it’s all in my head. My stupid sister-in-law even went as far as to tell me that I’ve made up my issues with fragrances and the migraines I get from them to control her brother. (He’s switched deodorant, detergent, stopped using cologne, etc.) It makes me sick that I’m now related to this woman.

I’ve dealt with people telling me it’s their right to wear whatever they want to wear and how dare I ask them not to. I just really don’t understand how anybody can have this attitude towards somebody. I really think it’s sad that people are so mean, ignorant, and inconsiderate just because they can’t understand what somebody is going through and choose to do what they know damn well is making others sick.

The section about me and my world brought me to tears. I sometimes feel like I’m totally alone. It’s nice to know that somebody gets it.

My dad and my aunt, but they’re not as bad as I am.

I view the usage of fragrances like smoking…. if you want to smoke, fine, but make others breathe your smoke in as well. If you want to use fragrances fine, but not in public places where everybody else around you is forced to smell it.

I wish more people would view the situation this way…. or at least not use the whole damn bottle every morning!

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Perfume and Fragrance Exposure During Pregnancy

I recently received an email from Richard Pressinger. He sent me a link to his web site – Chem-Tox.com. He also pointed me to a section on Perfume and Fragrance Exposure During Pregnancy and Learning Disability Research Web Site.

This is all very interesting to me because it supports my own hypothesis that the chemical pollution in our environment is severely impacting the future of our country. I wonder what else we’ll find before we decide to stop their use?

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A Visitor Needing Help

I wanted to call attention to the comments left by Tess on the Welcome Page. She’s dealing w/ asthma caused by fragrances and is in need of help and moral support. If you have any advice or words of encouragement for her, why not leave a comment there. I believe she subscribed to comments on that page and so will be notified of your comment.

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Do Unto Others…

Yes, the Golden Rule applies here: “Do unto others as you would have others do unto you.”

If you had an allergy or other condition that was worsened in the presence of some substance, you would want to avoid it. And it should be reasonable to ask friends, family and co-workers to help by not using it in your presence. Yet it seems that when it comes to fragrance, the Golden Rule goes out the window. Honestly, I’ve had friends, family and co-workers that thought that I just didn’t *like* fragrance. So it was really OK to wear them in my presence. Which is baffling. People so often equate an allergy with dislike, which isn’t what it’s about. If it were something I just didn’t like, I would endure it. But there are serious health issues for those sensitive to perfume.

There have been a couple of comments here recently that could be resolved with the Golden Rule. Linda left this comment on the Join the Conversation post:

I work in the Disability Services for Students Office at a college in Buffalo, NY and a faculty member down the hall wears an excessive amount of patchouli oil (2 different kinds). I am very allergic and I get temporal artery headaches, my throat swells up, etc. I went to the Administration over a year ago and I was told in writing that I was not allowed to approach this person about her smell nor was I allowed to mention the horrible smell to students in our office.

During exam week May 2008, four students were nauseous and had headaches due to her patchouli oil perfume. Since I am not allowed to approach this person, my boss has asked this person several times to give me the name of the products she is wearing. It has been a year now, and I still do not know what she is wearing. I have gone to an ear, nose and throat doctor, seen an allergist, and a neurologist and still cannot give them the name of the products she is wearing. An air purification unit was installed inside our office in May 2007 but this does nothing to address the issue of the smell outside our office.

On June 12, 2008, I left a phone message for Ann Curry Thompson to contact me. I have contacted lawyers in the Buffalo region, but no one wants to deal with fragrance issues.

I’m not really a big fan of lawsuits. I think there are far too many in this country. But, that doesn’t mean they are all bad. If you’ve got a problem at work and can get no help through your employer, then perhaps a lawsuit is the last option. If you have other ideas to help Linda, why not leave her a comment?

And this one from Sally was left on a recent Susan McBride Update post:

I too am living this nightmare. It use to be that my throat would close up and I’d get a pain in my chest like someone was sitting on it. But after months of having to have I.V. treatments with other patients who had on lotions. laundry soap etc. Even tho I was using oxygen. I moved to a new level. Now my eyes swell shut. That blew my theory of holding my breath when I moved around in public when confronted with a strong fragrance. I now must leave as quickly as I can before I swell up and can’t breath. If I sit in a seat that someone with heavy fragrance has sat I must throw those clothes away. No manner of washing, vinegar,borax,will remove it.

And I don’t have to smell it first to react. People don’t realize it is the chemical not necessarily the odor that causes the reactions. I am now isolated in a room by myself because even the doctors were horrified by my face. Yet still I react because it gets in the air system. I have been told by the place I’ve lived for 10 years that the can’t handle people like me. and have refused to renew my lease. A clear disability violation. Yet I can get no lawyer to handle my case, even tho I have several doctors who will confirm this. I live in florida if anyone can help me.

Please post a comment. I am battling mycroplasma pneumonia which makes my reaction to fragrance and chemicals even more severe.

The added stress of trying to find a “New” place that has not been smoked in, had fragrance etc. Is tremendous. Please post comments. thank you.

It really saddens me to read about Sally’s issues. Perhaps a lawyer is her best option too. I’ve read that Ann Curry Thompson has taken cases all across the country.

Have you encountered similar problems? What tips do you have for Sally and Linda? Leave a comment here.

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Tips for a Healthier Environment

I’m not taking credit for these suggestions. You can read EWG’s original article – 10 Everyday Pollution Solutions. I just wanted to list them here with some thoughts of my own.

1. Use cast iron pans instead of nonstick. I have always hated the idea of Teflon. Even before knowing about the toxic, bird-killing gases. The fact is that the stuff comes off the pan. So you know you’re eating it. I recently bought some commercial grade muffin pans. They were all I could find that were not non-stick. Do you know that they actually clean up better than the non-stick variety?
2. To avoid chemicals leaching into food, go easy on processed, canned or fast foods and never microwave plastic. Follow this link to read up on Bisphenol-A.
3. Buy organic, or eat vegetables and fruit from the “Cleanest 12″ list. You can see a rating of 43 fruits and veggies at FoodNews.org. The 3 most commonly purchased in our house – apples, strawberries and spinach – are in the “worst 12″ grouping.
4. Use iodized salt to combat chemical interference from the thyroid. Read more about rocket fuel contamination.
5. Seal outdoor wooden structures.Is there arsenic in your backyard?
6. Leave your shoes at the door. This cuts down on dust-bound pollutants in the home.
7. Avoid perfume, cologne and products with added fragrance. What a great idea. Check the cosmetics database for safer products.
8. Buy products with natural fibers, like cotton and wool, that are naturally fire resistant. Find products that are PBDE free.
9. Eat low-mercury fish like tilapia & pollock, rather than high-mercury choices like tuna & swordfish. Check the Safe Fish List.
10. Filter your water for drinking and cooking. What’s in your water?

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What Does Fragrance Free Mean?

I see a lot of talk on the web about this. As well as hear a lot of different comments. Some comments are about the fact that a product has an odor of any kind.

So, what do I mean by Fragrance Free?

It’s the addition of artificial fragrance that I mean when I talk about fragrance added to anything. You can call it “fragrance”, “masking fragrance”, “perfume” or even “parfum” (for that French feel). They are all the same. A bunch of chemicals that likely haven’t been tested on humans. Probably some have, but the fragrance industry doesn’t what to tell you about that. So they hide behind their “trade secret” claim.

You have to be careful when shopping. It isn’t enough that the front of the label says “Unscented” or “Fragrance Free”. There’s no FDA regulation about this. Or any regulation anywhere. If it’s a personal care product (shampoo, lotion, makeup, etc), then turn it over and read the ingredients. I know it’s more work, but if you’re sensitive, it’s necessary. Read the whole list. Fragrances are usually listed near the end, but don’t rely on that. I even read the ingredients when the front says “No Added Fragrance”. If you’re sensitive to fragrances, you can’t be too careful.

And if it’s a household product, it’s trickier. There’s no regulation that requires them to even list their ingredients. Sometimes it can be trial and error. Here are some clues: If it says “Fresh Clean Scent” or “Ocean Fresh Scent” or anything else that implies a certain scent, then don’t buy it. It has fragrance of some sort in it. Some products say “No Added Fragrance”. I trust these cautiously. Your best bet (although nearly impossible to follow 100%) is to only buy household products that list their ingredients.

And yes, a fragrance free product is likely to still have a ‘odor’ to it. Some chemicals have an odor. So you’ll still be able to smell something. Some people find the chemical odors objectionable. Which is why you often see “masking fragrance” in your ingredient list. To me, a masking fragrance is as bad (or even worse) than other added fragrances. I say worse because it can fool you without that fragrancy smell to it.

If you still want a product with a nice smell, consider purchasing a bit of an essential oil and adding it to your products. Don’t add a lot, a little goes a long way. And some of your ‘greener’ products have essential oils added. I’ve become so sensitive to odors that I stay away from these too. But you might want to give them a try.

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Household Products Database

I found a link recently to the Household Products Database. Created by the National Library of Medicine, it provides health & safety information on household products.

You can look up information by product or ingredient. For example, enter Fragrance in the ingredients search and you get this long list. I didn’t read the entire list, but I did look through it.

I learned some interesting things. For example, did you know you could buy Cologne for your pet??? I knew that if you took a pet to be groomed that they put stinky stuff on them. But worse – Crest Toothpaste is on the list as containing fragrance??!? What in the world? Why? Oh, sorry, probably cannot apply logic to this…

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From My Inbox

I receive emails via my other web site, Fragrance Free World, as well as from visitors to this site. I thought I would post some comments from a recently received email:

If exposed for more than 15-20 minutes can be under the weather, unable to sleep and depressed for 3-4 days thereafter

Air frsheners or fabric conditioners cause chest to tighten and breathing difficult

Sometimes feel that am tasting soap in my mouth and throat for hours afterwards

Have made my home free of chemicals and am well as long as I can avoid contact with V.O.C’s

Have followed development of REACH in the European parliament an am disappointed to see that 7 – 10 years will pass before chemical manufacturers need o show awareness and stringen safety controls so would just like to hear that someone out there is creating a greater awareness…..

I had not heard of REACH before so I thought I would do a bit of research.

Firstly, REACH is an acronym for : Registration, Evaluation and Authorization of Chemicals. This is a law that went into effect in Europe on June 1, 2007. The overall goal appears to be to protect human health and the environment from toxic chemicals. Prior to this law, chemicals that were in use prior to 1981 were sort of ‘grandfathered’ – i.e. they were not subject to the same regulations as newer chemicals. You can read more about REACH on this web site. While it is true that industry has up to 11 (eleven!) years to comply, it is encouraging to know that more is being done about this issue.

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