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Customer Review
Reviewed in the United States 🇺🇸 on May 14, 2013
I'm a 57 year-old man who has had MCS since 1978, before it even had a real name. I acquired the condition by virtue of a massive chemical overexposure that almost killed me. But here's the catch: the chemical was Freon. Monoclourodiflouromethane. This substance is harmless. The reason I almost died was because the sheer quantity of it replaced the oxygen in the room resulting in a near suffocation. So why did that give me MCS? Because the brain structure that is responsible for keeping you alive by avoiding danger, the amygdala, decided Freon was a mortal danger to me (since I almost died). Then, after dowsing my house with Spectracide to kill roaches, my amygdala extrapolated and decided that this insecticide was also a danger, apparently because of some overlap in its chemical structure with that of Freon. Then, things really spiraled downhill, as my crazy amygdala starting making connections between chemicals and ultimately decided that almost all aromatic chemicals are a danger to me. That is the cause of the spreading phenomenon that all MCS patients experience.
So, why am I so confident that the amygdala is to blame? Because a doctor put me on an ultra-high dose of Neurontin and I got dramatically better. Neurontin is an anti-convulsive that has a dampening effect on the amygdala. I had tried all the nonsense that the Environmental Illness community touts and found it all to be utter garbage. The top doctors in the field don't have a clue what they are talking about. First and foremost, the idea that the chemicals are to blame is stupid. Tiny doses of even toxic chemicals are not likely to hurt you. But my brain reacted violently to insanely small doses of harmless chemicals like laser toner. I literally couldn't be in the same room as a piece of paper that was printed on a LaserJet. Insane! Obviously, this illness has nothing to do with toxicity beyond the original incident or incidents that precipitated the damage. Yes, building materials can be toxic in large quantities, so getting MCS from a "sick building" is totally reasonable. But the real problem is not the chemicals, but an hyper-vigilant dysfunctional amygdala, which was damaged by some trauma, usually a chemical overexposure like what happened with me. Essentially, one should think of MCS as being similar to PTSD. PTSD is real, but the victim/patient is not in danger. So is it all in his head? Of course it is, but he's not a nutcase. He's brain damaged. Same with MCS patients.
So about the book: I didn't read it because I don't need to. I know MCS is real because I've had it for 35 years. The author may be well meaning but he doesn't have a clue what he's talking about. Just because medical "science" can't identify a cause for MCS isn't a reason to dismiss it. How many decades did medical science misdiagnose the cause of ulcers? A doctor found that they weren't caused by stress, but by the H Pylori bacteria. Decades of settled medical science was invalidated in an instant. Doctors are generally not a bright lot. And they can be quite disingenuous. If they don't know how to cure you, they'll blame your illness on you by saying it's all in your head. Or it's caused by stress. Or you're depressed. Well, guess what? Every single time a doctor says one of those three things he's lying to you. Doctors are too arrogant to simply say "I don't know." And this includes all the doctors that "treat" MCS. They are quacks just like the author of this book. Their treatments don't work because they don't have a clue what causes MCS. I spent two weeks in an Environmental Control Unit after I got sick in 1978, and it was a complete waste of money. Same goes for all the other BS that passes for MCS "cures" and "treatments." They are all crap because MCS patients have brain damage. Their amygdala has gone rogue and is sabotaging their bodies.
When an acquaintance asks me if I'd talk to a friend of a friend who has developed MCS, I say that I will, but only if they are willing to listen to the truth. If I end up speaking to the MCS sufferer, the first thing I tell them is to not waste their money on all the quackery that constitutes "medicine" in the EI field. Save your money because you are going to need it. Don't blow it on trying to get better and find yourself broke and homeless. Of course, few people take my advise and end up desperate. Money should be spent on controlling your environment, not on quackery. My second bit of advise is to find a doctor that will give them doses of Neurontin that exceed the max recommended dose, and therefore, exceed what your insurance company will pay for (I took 5200mg per day). If you can't take the side effects, then get off it, but at least give a shot. One final thing a person could try is one of the amygdala retraining courses (google it). I haven't taken a course because my neural pathways have been rutted over 35 years. But a person who has only had MCS for a few years may benefit. In fact a friend of mine had both MCS and electro-hypersensitivity and took one of those courses, and now claims to be 90% better. So maybe they work for some people.
Another thing I will tell people is that they should NOT move out into the country unless they can live in a house with a slab foundation. Houses with pier and beam foundations are often moldy. If you live in a moldy house you will almost certainly deteriorate. My EI doctor told me to move out of the city to get away from car exhaust and other chemicals. That advice almost killed me. Virtually all MCS patients are sensitive to mold, and mold is death. Stay away from it at all costs or you will not get better.
Bottom Line:
The author should know better than to say an illness doesn't exist that millions of people claim to have. That is just stupid and cynical beyond belief. I wonder if he thinks all those wimpy soldiers that fought in Falluja and now claim to have PTSD should be ridiculed and told it's all in their head. What a moron. But you know who else is a moron. All the clueless "doctors" that claim to be treating a disease that they don't understand, taking people's money, giving them temporary hope, but ultimately just scamming them. Other morons include all the MCS sufferers who blame their illness on industry. If you are reacting to chemicals in trace amounts, it's not the fault of the chemical company and it's not a conspiracy. Get a life. The problem is that you have brain (amygdala) damage. Deal with it and quit blaming the world. Don't alienate your friends and family by preaching to them about organic foods and other such nonsense. IMHO, wasting your money on organic foods is one of the stupidest things you can do. Conserve your cash! If regular store vegetables don't give you symptoms, then eat them.
So the author is an idiot, but he's mainly criticizing quacks (typical EI doctors) and morons (typical MCS sufferers). Everybody is wrong. I don't think MCS is curable for most people, but you can get better. Spend your time and money on controlling your environment, not "detoxing" or doing acupuncture, taking handfuls of vitamins, or any of the other 100 things you could do that don't work. And google "MCS + amygdala".
Good luck.
So, why am I so confident that the amygdala is to blame? Because a doctor put me on an ultra-high dose of Neurontin and I got dramatically better. Neurontin is an anti-convulsive that has a dampening effect on the amygdala. I had tried all the nonsense that the Environmental Illness community touts and found it all to be utter garbage. The top doctors in the field don't have a clue what they are talking about. First and foremost, the idea that the chemicals are to blame is stupid. Tiny doses of even toxic chemicals are not likely to hurt you. But my brain reacted violently to insanely small doses of harmless chemicals like laser toner. I literally couldn't be in the same room as a piece of paper that was printed on a LaserJet. Insane! Obviously, this illness has nothing to do with toxicity beyond the original incident or incidents that precipitated the damage. Yes, building materials can be toxic in large quantities, so getting MCS from a "sick building" is totally reasonable. But the real problem is not the chemicals, but an hyper-vigilant dysfunctional amygdala, which was damaged by some trauma, usually a chemical overexposure like what happened with me. Essentially, one should think of MCS as being similar to PTSD. PTSD is real, but the victim/patient is not in danger. So is it all in his head? Of course it is, but he's not a nutcase. He's brain damaged. Same with MCS patients.
So about the book: I didn't read it because I don't need to. I know MCS is real because I've had it for 35 years. The author may be well meaning but he doesn't have a clue what he's talking about. Just because medical "science" can't identify a cause for MCS isn't a reason to dismiss it. How many decades did medical science misdiagnose the cause of ulcers? A doctor found that they weren't caused by stress, but by the H Pylori bacteria. Decades of settled medical science was invalidated in an instant. Doctors are generally not a bright lot. And they can be quite disingenuous. If they don't know how to cure you, they'll blame your illness on you by saying it's all in your head. Or it's caused by stress. Or you're depressed. Well, guess what? Every single time a doctor says one of those three things he's lying to you. Doctors are too arrogant to simply say "I don't know." And this includes all the doctors that "treat" MCS. They are quacks just like the author of this book. Their treatments don't work because they don't have a clue what causes MCS. I spent two weeks in an Environmental Control Unit after I got sick in 1978, and it was a complete waste of money. Same goes for all the other BS that passes for MCS "cures" and "treatments." They are all crap because MCS patients have brain damage. Their amygdala has gone rogue and is sabotaging their bodies.
When an acquaintance asks me if I'd talk to a friend of a friend who has developed MCS, I say that I will, but only if they are willing to listen to the truth. If I end up speaking to the MCS sufferer, the first thing I tell them is to not waste their money on all the quackery that constitutes "medicine" in the EI field. Save your money because you are going to need it. Don't blow it on trying to get better and find yourself broke and homeless. Of course, few people take my advise and end up desperate. Money should be spent on controlling your environment, not on quackery. My second bit of advise is to find a doctor that will give them doses of Neurontin that exceed the max recommended dose, and therefore, exceed what your insurance company will pay for (I took 5200mg per day). If you can't take the side effects, then get off it, but at least give a shot. One final thing a person could try is one of the amygdala retraining courses (google it). I haven't taken a course because my neural pathways have been rutted over 35 years. But a person who has only had MCS for a few years may benefit. In fact a friend of mine had both MCS and electro-hypersensitivity and took one of those courses, and now claims to be 90% better. So maybe they work for some people.
Another thing I will tell people is that they should NOT move out into the country unless they can live in a house with a slab foundation. Houses with pier and beam foundations are often moldy. If you live in a moldy house you will almost certainly deteriorate. My EI doctor told me to move out of the city to get away from car exhaust and other chemicals. That advice almost killed me. Virtually all MCS patients are sensitive to mold, and mold is death. Stay away from it at all costs or you will not get better.
Bottom Line:
The author should know better than to say an illness doesn't exist that millions of people claim to have. That is just stupid and cynical beyond belief. I wonder if he thinks all those wimpy soldiers that fought in Falluja and now claim to have PTSD should be ridiculed and told it's all in their head. What a moron. But you know who else is a moron. All the clueless "doctors" that claim to be treating a disease that they don't understand, taking people's money, giving them temporary hope, but ultimately just scamming them. Other morons include all the MCS sufferers who blame their illness on industry. If you are reacting to chemicals in trace amounts, it's not the fault of the chemical company and it's not a conspiracy. Get a life. The problem is that you have brain (amygdala) damage. Deal with it and quit blaming the world. Don't alienate your friends and family by preaching to them about organic foods and other such nonsense. IMHO, wasting your money on organic foods is one of the stupidest things you can do. Conserve your cash! If regular store vegetables don't give you symptoms, then eat them.
So the author is an idiot, but he's mainly criticizing quacks (typical EI doctors) and morons (typical MCS sufferers). Everybody is wrong. I don't think MCS is curable for most people, but you can get better. Spend your time and money on controlling your environment, not "detoxing" or doing acupuncture, taking handfuls of vitamins, or any of the other 100 things you could do that don't work. And google "MCS + amygdala".
Good luck.
