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   MCS Guide -
   An introduction by Bonnye Matthews, MCS survivor
Matthews book
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     Bonnye Matthews, the author of this paper "Has My Environment Adversely Affected Me?", is an MCS survivor and author of books on Multiple Chemical Sensitivities, and a member of FedupFeds. We are pleased to offer her work as a unique guide for MCS that is unavailable anywhere else. Disclaimer: The author does not intend this as medical or legal advice, but as an educational service to the public and sufferers of environmental poisoning. --webmaster

Other recommended books:
Chemical Sensitivity, Bonnye Matthews (McFarland, 1992)
Defining Multiple Chemical Sensitivity, Bonnye Matthews (Ed.) (McFarland, 1998)
Chemical Exposure and Human Health, Cynthia Wilson (McFarland, 1993)
Newsletter:  Our Toxic Times from Cynthia Wilson (CIIN, P. O. Box 301, White Sulphur Springs, Montana 59645)
If you have porphyria or a porphyrinopathy, you'll need a booklet called:
Porphyrinogenic Substances from Cynthia Wilson at CIIN

 
RELATED:
See also
MCS,
FedupFeds topic page
Matthews on MCS 
FedupFeds topic page

 
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Has My Environment Adversely Affected Me?

Until 1989 I never had been asked that question. Since then I’ve received countless phone calls, letters, and email all asking the same question though worded in a wide variety of ways. Since that date, I have learned mostly the hard way through trial and error the ins and outs of a small band of environmentally induced medical conditions related to chemical exposures. I know nothing, for example, about what happens to people who are adversely affected by heat, fluorescent light, allergens, workplace violence or harassment, motion, lack of humidity, and so on. I do have more than a nodding acquaintance, however, with toxic chemical exposure, particularly the chronic, low level exposures.

My family has a term for my phone calls of this nature. They call it my "tape." When people call, I tend to "play my tape," because I say the same things to the callers. This tape may help some of you who are newly suspecting that your environment may be creating health problems. This problem is not limited to blue collar workers. Numbers of employees have been adversely affected in offices by so-called common office furnishings and products. Normally, I ask the person why they suspect the specific environment and whether they have any known toxics located in the area. I ask what medical route they have pursued. To share this information here, I will take a generic route. Since this material is designed for FedupFeds, I am assuming that the origin of the symptoms are associated at least by the reader with the federal work environment. What follows is information I usually provide to injured workers who suspect environmental toxics are causing their health problems.

"Tape": Have You Been Poisoned?

First of all, if you suspect that your symptoms are caused by toxics in the work environment, you have to find out. If you have had an explosive reaction to something, chances are you’re well on your way to discovering through the medical network what happened. In the case of low level toxic exposures over time, there are some symptoms that are quite subtle. Oddly, it is often the case that a large single exposure to a toxic is easier for the human to recover from than a chronic, low level one.

1. Identify what your symptoms are.

First thing to do is to write down a chart that shows the major body systems (that’s because that is the manner in which doctors will see you). If you develop pains in your liver write that down. If you have skin problems list that under skin. If you have breathing problems write that down. If your heart beats irregularly or your blood pressure falls quite low (or high) write that down. If you develop tachycardia ( really rapid heartbeats/minute) write that down. If your once normal temperature suddenly starts to drop into really low ranges (a degree or more below normal) write that down. Then, make a chart and keep it for two weeks and chart where you were that day and how your symptoms were. Then evaluate to see whether you can see a pattern.

A significant symptom in toxic exposure cases, one frequently missed, is short term memory loss. Typical of short term memory loss is knowing quite well where you lived as a child, but not being able to remember what you ate for breakfast or whether you did. Other signals are suddenly finding that you need a calculator to figure out the tip for a dinner out; driving somewhere and overshooting your destination or going in the wrong direction; finding yourself making memory jogger lists and notes, having a family member ask you to bring a cup of coffee from the kitchen while you’re in there and returning without it. Unfortunately these symptoms are all too often overlooked by both the patient and by doctors, particularly when the patient has compensated well and unconsciously. Even family members may not pick up on any change because the change comes on gradually and can be excused by any one of a number of reasons.

A symptom of symptoms is characterized by workaholic behavior and willingness to work significant overtime. That may sound absurd, but there is a relationship to chronic low level toxic exposure and addiction. An addict, however, can choose whether to take a toxic, the amount of it, the means of administration, and so on. In toxic exposure cases, the employee mostly doesn’t know it’s happening until it’s too late. Both the toxic addictive substances and low level toxic exposures have the nature of addiction. Characteristic of the chronic, low level toxic exposed worker is someone who performs above the norm. It’s as if the toxic gives a human a heightened level of performance for awhile. But, like illegal drugs, it is followed by a real downer unless the exposure is terminated before the critical point. And those who have experienced this type of workplace toxic exposure tend to continue to want to be in that environment even after they know it’s no longer safe. Mondays are days to look forward to--for awhile at least.

2. Identify what substances are in your workplace.

Toxic exposures can affect any part of the human anatomy. It is absurd to suspect just because something goes wrong that there’s a toxic involved, but since any system can be affected, it is wise to stay alert. Workplaces post Material Safety Data Sheets (MSDS), but they are hardly adequate. For example, many carpets glued to concrete floors contain and are glued to the floor with a substance called styrene-butadiene latex. These carpets off-gas as a chemical called 4-PC. Put your feet on the carpet while it’s drying and you can absorb all sorts of exotics through your skin. Breathe while it’s off-gassing and you can absorb the substance through your lungs. Carpets and the glues often contain a chemical called trimellitic anhydride (TMA). It’s very close to styrene in chemical structure. Generally, it is known what these chemicals do individually, but when they are added to the workplace as a mixture nobody knows precisely what they do. Well, some of us know very well what they do--now. But if you go to a store and look at a can of styrene-butadiene latex carpet glue, the container will say "no known health hazards." Everybody knows better, but nothing happens. The point is that even with MSDS, the employee will be exposed to some things which are never listed on the MSDS. As a result the very idea of informed consent is idealistic, not realistic.

Examine the products you use. Many will not even seem to be products. If you’re a painter, you know what the products are and usually you will have clear knowledge of what’s in them. If not, you can look for the MSDS on the net. However, if you work in an office setting you probably haven’t any idea that probably more than 50% of the printer toner from the photocopy machine is styrene. Some photocopy machines give off ozone during operation. You have to examine the area carefully. If products fail to list ingredients, write down what you can find on the label. Realize too that you must do this while you have the chance. Some work situations get terribly adversarial the moment anyone suspects an employee is looking for toxics in the work environment.

3. Try to chart your work area.

Realize that your air is not just a function of what is around your desk. The question is who shares your air? If you’re in a tall Federal Building, chances are that the air is shared by any number of other agencies. Who’s beside you, above you, below you? And what toxic chemicals are characteristic of their working environment.

Where is your office located? Is the environment industrial, and if so, what’s there? Is your environment downtown? What is the local air pollution control agency reporting each year on that environment? What is the prevailing wind in the area of your office? And what’s upwind from there? Even if your building has shut windows, your air comes from somewhere. You need to consider it. If your building has windows that can be opened, you should still be aware of what is coming toward you. Your local air pollution control agency will have charts that show not only the prevailing winds but can also give you the information on what other directions the wind comes from. what is upwind from those other wind directions?

4. See your family doctor, if you have one or an internal medicine doctor, if you don’t.

When you begin to develop symptoms that are significant, you need to check with your doctor. Good doctors will ask environmentally related questions. They realize that environment is important. Unfortunately many practicing today did not have environmental issues, at least not of this nature, as part of their training in med school. If you see a tie and your doctor isn’t tuned in, discuss what you’re thinking with your doctor. Be sure that you have a decent physical exam. Some problems are significant enough to be picked up on a careful exam. (Avoid the doctors who work in these groups where the doctor sees the patient for 10 minutes and all the rest of the time a physician’s assistant handles the nitty gritty.) You need someone who will listen carefully and ask questions, and who will answer yours even if it’s to say, "I just don’t know."

The reason for this first approach is that the doctor will have a generalist perspective. You need to see someone who has experience with the whole person, not one who looks at you and sees a liver, or a heart, or skin, or lungs. If you’ve been damaged by toxics, the damage tends to be general. That is, it affects more than one system in your body. That’s not always the case, but generally it’s true.

And you’ll need someone who is your primary physician. This person is like a dispatcher to send you to specialists and then like an overseer to keep tabs from the reports generated to know where you are in the process on all phases of your condition.

5. Get an answer to the question: Have I been poisoned?

It’s important to know one medical principle: Rule out physical cause BEFORE leaping to the psychologic/ psychiatric. Also realize that most doctors when they were in med schools were taught that people who present with multiple organ symptoms are psychological/psychiatric cases (or in their terms "head cases"). Recognize that toxics poison, they don’t create allergy, at least not when allergy is viewed as a reaction to a non-poisonous thing like dust mite droppings or cat saliva, nor do they necessarily make you crazy. Also, a poisoned person is not immune to having psychologic/psychiatric problems. In addition, having a psychologic/psychiatric problem doesn’t give immunity from poisoning.

Unfortunately many of the symptoms of chemical poisoning look just like psychological or psychiatric problems. Many doctors who are accustomed to treating symptoms (not all of them approach patients that way, but too many do) may look at you and see nothing seriously wrong and prescribe an antidepressant. If you’ve been poisoned that could be a very wrong thing to do. Before you take drugs of that nature be sure that you’ve ruled out poisoning.

Now, poisoning is a term that brings with it all sorts of mental images. If you’re considering that you may be working in an environment that contains toxics and you have symptoms that you strongly associate with that environment, you just have to get used to the term. Toxics poison. There is, however, life after poisoning.

6. Follow referrals from your generalist doctors to specialists.

If you develop conditions that are relatively normal following toxic exposure, your doctor will refer you to specialists. Begin your collection of identified problems arising from the toxic exposure.

7. Begin to create your medical file.

Be sure to include a complete medical record, which you have to ask for, from each doctor you see. Make at least two copies. One you keep and nobody touches but you. The other can be given to other doctors you may see. They can copy anything they like and return the file to you. Tab the sections for easy retrieval and keep a table of contents going.

8. If you have any hint of problems that affect your ability to think or remember, the best first test is a neurological assessment administered by a clinical neuropsychologist.

Do not go to a neurologist. The standard array of neurological tests fail to identify problems caused by poisoning due to lack of sensitivity. I recommend that you find a clinical psychologist who is a member of the American Psychological Association. They are uniquely able to diagnose brain damage done by neurotoxics.

Why that association? Well, in the first place clinical neuropsychologists are trained to use tools to make the determination of whether a problem with the brain is psychogenic or organic. That is their function. These doctors usually have a Ph.D. MD’s don’t diagnose organic brain syndrome (problems with the structure of function of the brain) unless they are doing some sophisticated brain mapping (e.g., PET, SPECT, Evoked Potentials--tests which are very expensive). Another reason? Yes. The American Psychological Association wrote an amicus brief for the North Carolina Court of Appeals in 1986 [No. 8610IC214, N.C. Industrial Commission, Edward Horne, Plaintiff-Appellant v. Marvin L. Goodson Logging Co. and SELF-INSURED (Hewitt, Coleman & Associates, Inc.), Defendants-Appellees; Docket No. I-1608, I.C. No. 809927]. The material makes it very clear that the testing done by clinical neuropsychologists is the tool of choice medically to determine whether brain injury is organic or psychogenic. That’s been the case now since 1986.

The neuropsychological assessment is a very sensitive tool. If you’ve had any brain injury from toxics, chances are you are in for some real tough unveiling of deficiencies. When you find that you just flat cannot perform a simple function, it tends to be demoralizing to say the least. If this occurs, remember to give yourself permission to ask the person to repeat directions. It’s also okay to state that what you’ve just discovered is upsetting and to give you a minute or two to get yourself together. Even if you think you’re fine, take some tissues if you tend to cry easily.

Once you’ve finished the exam, ask the doctor to send you a copy of the report and to include, if there is brain impairment, the degree of impairment and whether it is due to toxic exposure in your workplace. They classify the levels of impairment as mild, moderate, and severe.

It should be noted that some clinical psychologists may use the term toxic encephalopathy when they connect the organic brain syndrome with toxic exposure.

A word about brain impairment. Just because you have brain impairment doesn’t mean necessarily that you’re ignorant, stupid, retarded, or any of the terms you might associate with such a diagnosis. It does mean that there is abnormality. If you were used to reading at 700 words per minute and you can’t read anything well any more, but you can still get it if you read something over and over, well, then there’s been a change and you have to adapt, but you can still read. You may have to read it 5 times or 10 or 25, but eventually it’ll sink in. There are things you can do to help yourself with many areas that injury affects. It all depends on where the toxic hit and the degree to which you are willing to stretch and how you personally view yourself following this new knowledge.

9. If you find that you have brain impairment consistent with toxic exposure, then I view it as critically important these days to determine whether you have either a toxic induced porphyria or a porphyrinopathy.

You may choose to rule out porphyrias even in the absence of organic brain syndrome, if you occasionally have severe abdominal pain or your skin breaks our in blisters from minor contact with sun. I recommend Mayo’s in Rochester for the evaluation. The reasons: Mayo’s is the place where the tough porphyria cases get sent in the nation. Also, their lab is capable of testing enzymes. Now, Harrison’s Principles of Internal Medicine, 13th edition, Section 346 THE PORPHYRIAS, page 2073, states "The porphyrias are inherited or acquired disorders of specific enzymes in the heme biosynthesis pathway," and "a definite diagnosis requires demonstration of the specific enzyme deficiency."

That probably read like Greek, right? Porphyria is a disorder that occurs on the pathway to the creation of heme. Heme is a component of hemoglobin. Hemoglobin enables red blood cells to pick up oxygen.

Now, Mayo’s used to test for one enzyme and inferred enzyme deficiency for the remainder. Mayo’s in recent years has developed tests for the remaining enzymes. It is more accurate perhaps when looking for enzyme deficiency to measure the enzyme level rather than to infer them because of the amount of porphyrins excreted in urine or feces.

[Note: Harrison’s is the book doctors use among themselves to discuss medical cases.]

10. What if you have organic brain syndrome/toxic encephalopathy?

The first concern should be information. People with this condition frequently experience what has come to be called "brain fog." Brain fog is a result of contact with minute amounts of toxics that enter the olfactory nerve and from there can access the brain. The person who is experiencing "brain fog" is technically in a medical emergency. What occurs sets off a cascade of events that ultimately can take bites out of the person’s IQ as well as create brain lesions in various places. Whatever sets it off must be avoided.

It is also critical to keep in mind that when neurons are stressed as in "brain fog" they gobble up oxygen. That reduces the overall oxygen in your system. You may need oxygen for your brain, not your lungs.

Finally, if you find that you try avoidance but continue to have recurring "brain fog" you might want to try TRH. TRH is thyroid releasing hormone and it stops that cascade of effects that leads to so much damage. It is available as a nose spray.

If you’re involved in a worker’s comp case, litigation, claim for entitlements, get an attorney. If you have organic brain syndrome/toxic encephalopathy, you are not wise to try to do it yourself.

11. What if you have toxic induced porphyria or a porphrinopathy?

First, you have to realize that there are over 3,000 known porphyrinogenic substances. These are chemicals that can set off a porphyria attack. Some porphyria attacks (depending on the low enzyme) can lead to respiratory failure. Some types of porphyria lead to liver cancer. It is not a disease to toy with. The reason that it’s so important to know whether you have this is due to the fact that if you should require surgery, there are some anesthesias that can kill you. There are other common drugs which can set off porphyria attacks. The reason I indicated earlier that you need to pursue your diagnoses before taking antidepressants is because the drugs that are the standard anti-depressants, anti-psychotics, and anti-anxiety agents are largely porphyrinogenic. Other prescribed drugs can cause problems as well: the freon propellants in hand held inhalers for those with asthma can create problems for those with prophyria, cortisone can cause prophyria. cortisone can create a condition that the patient never had, diabetes, and has in many cases where those with asthma were prescribed cortisone. That further complicates the medical condition because carbohydrates relieve porphyria to some extent.

Now, remember that when heme is produced, the object is to transport oxygen. When you have deficient enzymes two things happen that are significant to the person with the problem: (1) they overproduce porphyrins and (2) they may get reduced oxygen transport. It is the deposition of porphyrins in skin that causes blisters or lesions from sun contact. Depositions of porphyrins anywhere is not healthy. They’re supposed to be excreted. I imagine a production line. All the workers are lined up along the moving line. The workers are enzymes and each has a job along the line to make a modification. At each spot along the line a porphyrin gets changed to a different porphyrin by the enzyme worker. Now, a worker doesn’t show (decreased enzyme = porphyria). What happens? The prophyrins on the moving line hit the station where that worker is absent and they start to pile up and overflow because the next worker can’t do anything with them. Decreased enzymes lead to increased prophyrins and porphyria.

Now, some chemicals are both neurotoxic and porphyrinogenic. That hits the human in two different ways simultaneously. The added problem is that while the brain is struggling and eating up oxygen, increasing the body’s demand, the system for creating the ability to transport oxygen is compromised. A lot of overlapping body systems get involved. And back to the choice of doctor, that’s why you need to see a generalist. Medicine is specialized. If you’ve been poisoned you are most likely to have a systemic problem, one involving multiple systems, if not all of them.

12. What’s most important?

The single thing I see all too often in chemical injury cases is that the lives of the people become further damaged from interaction in attempts to gain the benefits to which they should be given, from family and friends failing to understand the real problems, and from depression over what has occurred in their lives and with the medical conditions. There is life after poisoning. The quality may be significantly altered, but there is life. I encourage anyone in this situation to find something to pursue. Find things that give you pleasure that you can do. Find a psychologist you can tell your troubles to and try to keep from overburdening those with whom you live, friends, and family. The remainder of your life is not what others make it; it’s what you make it. Get bitter, terrified, too much of a burden, and you’ll be left alone. Reach out, do what you can to help others and do it with a cheerful spirit, and people will be supportive. Those decision that affect your own happiness are yours alone.

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