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.

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!

Check out my shop: Breathe Free Shop.

Leave a comment below if there is something else you would like to see.

one of a group of substances, usually acidic amino acids, that in high amounts react with specialized receptors in the brain, causing destruction of certain types of neurons.

These would include aspartame (aka Nutrasweet) and monosodium glutamate (aka MSG). Having a background in Biology, I knew from Biochemistry class (thanks, Dr. Phillips, wherever you are!) that aspartame and monosodium glutamate were amino acids. It puzzled me that something that is required for human life (amino acids are what proteins are made of) could also produce migraines in me.

Aspartame is widely used as an artificial sweetener. And MSG is ubiquitous in its use as a flavor enhancer – not just your Chinese food. Read your labels. It’s in nearly every commercial soup, salad dressing, sauce.

(Well except one well known commercial soup maker has a line of soups called “Healthy Request” which has no MSG, among other things. Which begs the question: If the ones without MSG are labeled healthy, what does that make the others? But, I digress.)

Glutamate (found in MSG) and aspartate (found in aspartame)

are two powerful amino acids that act as neurotransmitters in the brain in very small concentrations, … In higher concentrations as food additives, these chemicals constantly stimulate brain cells and can cause them to undergo a process of cell death known as excitotoxicity – the cells are excited to death.

That doesn’t sound like anything you want going on in your brain, right? And what about the developing brains of children? I admit I used to consume both of these, until the MCS got to the point that they caused migraines. If only I had known all of this long ago… I’ve now opted for less sugar, rather than sugar substitutes. As for MSG? Really the only reason it is used is b/c you can use less of the more expensive spices when you add MSG as a flavor enhancer.

Dr. Dean also says:

A growing number of neurosurgeons and neurologists are convinced that excitotoxins play a critical role in the development of several neurological disorders, including migraines, seizures, learning disorders in children, and neurodegenerative disorders such as Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, and amyotrophic lateral sclerosis (ALS).

I bought Dr. Dean’s book for the information about Magnesium and why we need it. But she has good information on other topics as well. You can also check out Dr. Dean’s web site.

• Chemical Sensitivity
• Food Sensitivity
• Electrical Sensitivity
• Electro Magnetic Field Sensitivity
• Pollen and Other Inhalant Sensitivities
• Dust, Dust Mite Sensitivity
• Fabric Sensitivity
• Multiple Chemical Sensitivity
• Candidiasis (imbalance of Candida yeast)
• Fibromyalgia
• Chronic Fatigue Syndrome
• Chronic Fatigue Immune Dysfunction Syndrome
• Restless Legs Syndrome
• General Anxiety Disorder
• Irritable bowel Syndrome
• Lupus
• Tinnitus/Menieres’ Syndrome
• Asthma
• Sick Building Syndrome

I suspect that there are still a couple of others to be added here. Among them would be ADHD, Gulf War Syndrome, MS and most any other auto-immune disease.

What does this have to do with Randolph’s Disease? Dr. William Meggs recently recommended that Environmental Illness/Multiple Chemical Sensitivity be renamed Randolph’s Syndrome, after Dr. Theron Grand Randolph. Who is this Dr. Randolph?

Theron Grant Randolph, M.D. is known in the chemical sensitivity network as the Father of Clinical Ecology or, as it is now known, Environmental Medicine.

Also from the web site:

Indeed, changing the name of MCS to Randolph’s would solve a lot of problems associated with all the other names in use. And, as his actual work would become more well-known, it might induce people diagnosed with CFS, Fibromyalgia, and Irritable Syndrome, Restless Legs Syndrome, General Anxiety Disorder, etc. to recognize that what they have is Randolph’s Disease. After all, he was treating all these named diseases long before they were treated as separate entities.

Which is saying what many of us have known all along – that this is one illness with a long list of variable symptoms. You can read more on this page about Randolph’s Disease.

There’s a lot of good information here. Especially the short documentary produced/directed by Alison Johnson that is titled Chemical Sensitivity: A 15-Minute Introduction. In the documentary are stories told by several workers that responded after the 9/11 attacks at the World Trade Center. It’s not surprising, at least to many of us, to learn that many people that responded to the 9/11 attacks and the subsequent clean up are now dealing with MCS. You can also read the transcript of the documentary, although it’s much more interesting to watch the video. It lets us all know that these are real people suffering from real problems.

I encourage you to visit this site and watch the short recording. Also, have the people in your life watch it too. It really helps you to see what a problem this is.

This has brought to mind a question for visitors to the site. Many people who have MCS can trace their health issues to a specific incident or exposure to chemicals. I’ve tried myself and am not really sure, since it goes back to when I was 16 and I didn’t know the full nature of the problem until over 30 years later. But, I do recall one incident that may have been the start of it all. I have a brother who is 6 years younger than I. When I was 16, we didn’t exactly get along (that’s putting it mildly). I can recall one time that he literally poured a bottle of my perfume out in my bedroom. While I can’t recall exactly when that happened, it was in the right time frame.

What about you? Is there a specific incident or exposure that you can trace you MCS back to?

• The MCS House Guest
• The MCS House Guest Part 2

This week is about loose ends. Just a few more things to consider if you’re expecting a house guest that has MCS or any other health issues exacerbated by fragrances.

I’ve been thinking about this topic as I go through my days lately and it’s reminded me of things I need to mention.

One thing has to do with soap. I have traveled with my own soap and shampoo since I was in high school. (Back then I traveled on a T.Rex’s back.) So I always have soap in the one bathroom that I occupy. But that isn’t always enough. There are a lot of soaps out that I refuse to use. Especially the liquid hand soaps that are so popular. They leave their perfume smell on your hands, and it stays for a very long time. I just cannot use them. They’re so penetrating that the smell is actually absorbed by the plastic container that you put them in. It can be awkward dealing with this issue. When I travel, I like to be a good house guest, but I also like to be migraine free. (And so does everyone around me b/c I’m not a lot of fun with a migraine!) This is likely the type of issue you might want to work out with your future house guest in advance.

Another problem area is the dishwasher. I’m still totally puzzled at the fact that when you go to buy detergent for your dishwasher, you have to choose a scent. Why? What in the world for? I really don’t want my dishes to smell like flowers, or lemons or anything else, thank you. Not to mention that I am then ingesting those fragrances when I eat off the plate! But it’s a fact of modern life that everything you find in your average grocery store has a fragrancce. Before I found fragrance free dishwasher detergent, we had rules. First, no lids to travel mugs were allowed in the dishwasher. They absorb the fragrance and then I have to smell it with each sip. Second, and most important, never run the dishwasher when I’m going to be near the kitchen. In our house, that means we only ran it when we went to bed or when we left the house. It may seem petty to you if you don’t have an issue with fragrances, but the entire time the dishwasher runs, it emits those fragrances into the air. Something to keep in mind with your house guest.

There is one topic that I haven’t covered yet, and that is Pest Control. If you live in Colorado, you can likely ignore this because you may not know what I’m talking about. But here in South Texas, insects are a problem. You cannot avoid having them come into your house. But pest control chemicals can be particularly nasty. We had one man doing our house for years and I had no problem with it. Sadly, he passed away. The next ones we brought in caused a three day migraine. I tried one more, recently. He said his products were “green”. Well, I didn’t have a migraine, but I was allergic to his products. So I sneezed and such for days. I still haven’t decided which is worse – allergy or migraine. Besides, five weeks later the ants are back in our kitchen.

I bring up pest control here because you may want to ensure that you don’t have pest control service very close to your house guest’s arrival.

On a side note – if anyone has suggestions on safe pest control, I could use them.

I have just a couple of points left to make here. First, some of us have diet problems that go along with the MCS. I know I do. I can’t eat msg, nitrates, most nuts, plus a few other things. So, you may want to ask your house guest about diet issues. After all, you wouldn’t want to plan a pizza night only to learn that your house guest can’t eat the pepperoni. (BUT, Whole Foods has nitrate free pepperoni!) And lastly, be considerate of your house guest. I’ve had people roll their eyes and act like I’m crazy. I may be, but I’m still super-sensitive to smells and am likely to notice things that others dont. So, if your house guest mentions a prolem, trust that it is a problem.

Well, I think I’m done with this series on the MCS House Guest. Unless someone has questions. Please leave your comments and questions on this post and I’ll try to address them.

• The MCS House Guest
• The MCS House Guest Part 2

This week I’m going to cover house cleaning and laundry issues, plus a bit more.

House cleaning can be a real issue since most of the brand name products are full of fragrances, VOCs, and who knows what else. I generally buy all such products at Whole Foods or a local health food store. Although, I confess to using a brand name toilet cleaner because it does such a good job. Might not be a good idea b/c I can definitely smell it, but still – I like clean toilets, too!

If you’re like most of us, cleaning your house is on the list of things you’re likely to do before someone comes to visit. And that’s ok. If you can, choose some less toxic, less fragrant products. But if not, it works for me if you clean a few days in advance. (But I can’t stress enough that this approach won’t work for all.) That will give the chemicals some time to clear the air.

If you want more on cleaning products, see these 2 posts:

• Fragrance Free Household Products
• More Tips on Fragrance Free Household Cleaners

What about your linens – especially for the bed where your guest is staying? You can reference this post I wrote earlier on my laundry recipe. BUT, if you’ve been using scented fabric softeners or dryer sheets and scented laundry detergent then those smells may not come out. I’ve read that it can take 20 – 30 washings. And I believe it. What are your alternatives? It’s rather awkward these days to hang sheets outside. That may work for towels, which is good because any fragrance left in the towels will transfer to the person using it! Another alternative for sheets is to talk to your visitor. I have sheets in every size and I am not above traveling with them!

What about your car, though? Hopefully you don’t have any type of “air freshener” in your car. Or if you take it to a car wash they don’t use one in your car. If so, a few days of open windows in the sunshine are in order. And hope that it works.

That’s all for now, I do have a couple of other things I’ve thought of. Plus, I’ve found as I go about my daily routine I think of other things. So, tune in next week for part 3.

As always, your comments, suggestions and questions are welcome!

The MCS House Guest
The MCS House Guest Part 3

I need some help! A family member with MCS may be coming to visit me and I want to do everything possible to make it a fun and pleasant visit for her (so that I may expect future visits)! I have a guest bedroom that is mostly closed off. I went in there the other day and it smells a little musty. The guest bathroom is the children’s bathroom but it’s also where I get ready every morning. I do use hairspray in there and unfortunately, there is no window. What things can I start doing now to help with the visit? Maybe you could write a series of blog posts on this?

So this is my start at answering her. I’m not sure just how many posts this will actually be. We’ll just see how it goes.

But first, a Disclaimer. (No, not about the fact that I’m not a doctor. Although I’m not.) This disclaimer is about the information I’ll provide and the fact that it is NOT One-Size-Fits-All. Every MCS case is different. There are people with MCS that are just not able to travel. And others that can, but they cannot tolerate many things at all. Indeed, it is a disease that has been known to destroy relationships. BUT, my limited travel experience tells me that if the other party is asking questions, it is likely to go well. My best experience was visiting my step-daughter. Of course, it helped immensely that her husband got migraines from (most) fragrances.

The best advice for anyone expecting a house guest is MCS is to ask them what they can and cannot tolerate. They’ll be delighted that you cared enough to ask.

So – on with the tips.

First, let’s talk about that musty odor. Believe me, there are a lot worse things than a musty odor. A room that’s been closed up will tend to be musty. How to cure that? Wash whatever is washable in a Fragrance Free Detergent. (All Free & Clear works well for many.) Don’t use any fabric softeners or dryer sheets. Baking soda in the wash, and vinegar for a rinse do well. Another thing that really helps is fresh air and sunshine. It’s amazing the odors a day in the sun will do for clothing, pillows, linens, etc.

If you’ve done any recent remodeling, let your house guest know in advance. Paint smells hang around for a long time. And if you have any planned, wait till after the visit.

Regarding the hairspray in the bathroom: Since it’s an aerosol, hairspray goes everywhere when it is sprayed. On the floors, any fabrics (rugs, curtains, towels), into the wood, even plastic will absorb those smells. So, if at all possible, find another place to spray it.

It’s funny how those odors are. You’re not likely to notice them, since you’re around them all the time. But they are there. I once had a not-so-thoughtful house guest who used something with a fragrance in it. Mind you, they were asked not to, but not everyone believes there’s a real health issue here. (Either it’s all in my head, or I just don’t like perfumes. You’ve no doubt met the type.) Whatever it was they sprayed, it hung around for a couple of weeks after they were gone.

The next thing I would address is the use of air “fresheners”. The rule there is – Don’t. Get rid of them now, as in ASAP. As in Yesterday. Your whole family will breathe better anyway as there really isn’t anything healthy in them.

I have to laugh at the managers of the copy franchises around town. They put all these plug-in air “fresheners” in their store because of the chemical smells from the copiers. One near me had 2 plug-in air “fresheners” within 6 feet of each other. What they don’t quite get is this. First, everyone is still breathing the nasty chemicals from the copy machines, even if they no longer smell them. Second, the VOCs in the plug-in air “fresheners” really are just as bad for you. So, they’ve only succeeded in making a bad problem worse.

Hopefully, you don’t use a lot of air fresheners throughout your house. If you do, and they’ve been there a while, then they have probably been absorbed by EVERYTHING. Warn your visitor, please.

An example of how pervasive the odors can be: My father’s house always had a particular odor to it. I suspect that it was some sort of fragrance, likely from a cleaning or laundry product used in the house. Everything that came out of that house had that smell. Clothing, furniture, papers. Literally everything. When I had to clean his house out last year, you could smell it. And realtors who showed his house commented on it. It did finally go away. By that time, the house was totally empty and the carpet had all been steam-cleaned. But it really did hang on to everything.

OK – next week I’ll have some more info. I’ll tackle cleaning and laundry issues.

Feel free to leave questions or comments here.

The MCS House Guest Part 2
The MCS House Guest Part 3

It seems from the very first, the Nightline piece had no intention of being objective journalism:

Nightline began the episode with “What if you “thought” that the world around you was making you sick? If you “feared” that the house you live in, the car that you drive and everyday activities such as watching television and talking on a cell phone were making you ill? Dr. William Rea “says” he has treated more than 30,000 people, from all over the world, who “believe” the world around them has made them sick. Very sick.”

There, there, dear. It’s all in your head. If you just thought differently, then you wouldn’t feel so bad. Puh-lease! Why in the world would I want to feel this way if there were a choice? Why would I choose to be a recluse. It’s not really who I am. It’s just what I have to do.

The article, by Lourdes Salvador, makes some very good points by applying critical thinking to the Nightline piece. I encourage you to read it all.

Ah, if we read on, we get a glimpse of what is really going on. Dr. William Rea, the founder of the Environmental Health Center, hasn’t been published in the journals published by the drug pushers – er – companies. You see, MCS isn’t generally treated with drugs.

And, after all, isn’t it the American way that every health issue can, and should, be resolved by drugs? How often do you got to the doctor expecting to leave with a prescription. It was so in-grained in my father that he would plan it. “I have a doctor appt. at 11:00 am. From there we can drop the prescription at the pharmacy, go to lunch, and then pick up the prescription.” No matter what he went in for. It’s even impacted how doctors treat patients. Doctors are part of the problem with antibiotic sensitive bacteria. It’s much easier to prescribe an unneeded antibiotic for a viral infection than to try to educate the masses.

It’s almost un-American to have an illness and not treat it with a drug. And that is courtesy of our local drug pushers – er – companies.

But, really, should an illness be treated differently just because drugs aren’t the solution? I think not. What are your thoughts?