Immune-mediated inflammatory diseases

[Jhanananda]

This is what my life has been for 19 years Snowflake, Arizona: where the residents are allergic to life

[Naman]

Wow this is happening to others as well.

[Jhanananda]

Yes, Naman, MCS suffers are a very small part of the population.  We often times are driven mad with the condition, which few doctors understand.

Multiple chemical sensitivity (MCS), also known as idiopathic environmental intolerances (IEI), is a complex chronic condition symptoms characterized by non-specific symptoms that the affected person attributes to encountering small amounts of common substances, such as perfume. The etiology, diagnosis and treatment of MCS are controversial and still debated among researchers, but a 2018 review concluded that a hyperactive limbic system and autonomic nervous system were confirmed features of the condition.[1] A 2018 systematic review concluded that the evidence suggests that organic abnormalities in sensory processing pathways and the limbic system combined with some specific, uncommon personality traits (such as heightened attentional bias) best explains this condition.[2]

Commonly attributed substances for MCS symptoms include scented products, pesticides, plastics, synthetic fabrics, smoke, petroleum products, and paint fumes.[3]

MCS symptoms are typically vague and non-specific. They may include fatigue, headaches, nausea, and dizziness. Although the symptoms of MCS themselves are real, and can be disabling, MCS is not recognized as a separate, discrete disease by the World Health Organization, American Medical Association, or by several other professional medical organizations.

Signs and symptoms

Symptoms range in severity from mild to disabling.

Symptoms are common, but vague and non-specific for the condition. The most common are feeling tired, "brain fog" (short-term memory problems, difficulty concentrating), gastrointestinal problems, headaches, and muscle pain.[3]

A partial list of other symptoms patients have attributed to MCS include: difficulty breathing, pains in the throat, chest, or abdominal region, skin irritation, headaches, neurological symptoms (nerve pain, pins and needles feelings, weakness, trembling, restless leg syndrome), tendonitis, seizures, visual disturbances (blurring, halo effect, inability to focus), anxiety, panic, anger, sleep disturbance, suppression of immune system, digestive difficulties, nausea, indigestion/heartburn, vomiting, diarrhea, joint pains, vertigo/dizziness, abnormally acute sense of smell (hyperosmia), sensitivity to natural plant fragrance or natural pine terpenes, dry mouth and eyes, and an overactive bladder.[3][8][9][10]
Causes

There is no clear consensus for the cause or causes of the symptoms of MCS. A 2007 National Institute of Environmental Health Sciences paper defined MCS as a "chronic, recurring disease caused by a person's inability to tolerate an environmental chemical or class of foreign chemicals".[11] A 2018 systematic review concluded that the evidence suggests that abnormalities in sensory processing pathways combined with peculiar personality traits best explains this condition.[2]

In addition to extreme sensitivity to low concentrations of certain chemicals, several hypotheses have been proposed. The distinction between physiological and psychological causes is often difficult to test,[6] and it is particularly challenging for MCS because many substances used to test for sensitivity have a strong odor. Odor cues make double blind studies of MCS patients difficult, as scents can provoke a psychosomatic response or recall expectations and prior beliefs.[6]
Chemical triggers

Many chemicals have been reported to trigger MCS symptoms.[12] Substances with strong scents are the most commonly reported triggers. These include a variety of cleaning agents, pesticides, perfumes, vehicle exhaust, the products used in barber shops and beauty salons, new carpeting, new furniture, chlorine and fluoride in drinking water, fresh ink, and less commonly wood smoke and secondhand tobacco smoke.[13][14] Food items reported as triggers include tartrazine (a.k.a. FD&C Yellow #5 or E102), and other azo dyes[15] (in the absence of an allergy), caffeine, and monosodium glutamate.[16]
Immune

One proposed hypothesis for the cause of multiple chemical sensitivity is immune system dysfunction after being sensitized by a chemical exposure.

Diagnosis

No characteristically unique signs, laboratory test abnormalities, tissue pathology, or course of illness have been identified, and it remains unclear whether symptoms are physiologically or psychologically generated.[32][33]
International Classification of Diseases

The International Statistical Classification of Diseases and Related Health Problems (ICD), maintained by the World Health Organization, does not recognize multiple chemical sensitivity or environmental sensitivity as a valid diagnosis.[4] The American Medical Association does not recognize MCS as an organic disease because of the lack of scientific evidence supporting a cause-and-effect relationship between very low level exposure and the symptoms of MCS. The American Academy of Allergy, Asthma, and Immunology, the California Medical Association, the American College of Physicians, and the International Society of Regulatory Toxicology and Pharmacology also do not recognize MCS.[5][12][34] The US Occupational Safety and Health Administration (OSHA) indicates that MCS is highly controversial and that there is insufficient scientific evidence to explain the relationship between the suggested causes of MCS and its symptoms. OSHA recommends evaluation by a physician knowledgeable of the symptoms presented.[35]
Other

In response to a WHO call for papers at the 5th Paris Appeal Congress of Environmental Idiopathic Intolerance conference that took place in Belgium on 18 May 2015, a report that was generally supportive quoted a number of international practitioners.[36] This was provisionally accepted by the Spanish health ministry, and later found proven by a judge in the case of a plumber in the Province of Castellón.[37]

MCS is a diagnosis of exclusion, and the first step in diagnosing a potential MCS sufferer is to identify and treat all other conditions which are present and which often explain the reported symptoms. For example, depression, allergy, thyroid disorders, orthostatic syndromes, lupus, hypercalcemia, and anxiety need to be carefully evaluated and, if present, properly treated. The "gold standard" procedure for identifying a person who has MCS is to test response to the random introduction of chemicals the patient has self-identified as relevant. This may be done in a carefully designed challenge booth to eliminate the possibility of contaminants in the room. Chemicals and controls, sometimes called prompts, are introduced in a random method, usually scent-masked. The test subject does not know when a prompt is being given. Objective and subjective responses are measured. Objective measures, such as the galvanic skin response,[38] indicate psychological arousal, such as fear, anxiety, or anger. Subjective responses include patient self-reports. A diagnosis of MCS can only be justified when the subject cannot consciously distinguish between chemicals and controls, and when responses are consistently present with exposure to chemicals and consistently absent when prompted by a control.

A 1999 consensus statement recommends that MCS be diagnosed according to six standardized criteria:[4][39]

    Symptoms are reproducible with repeated (chemical) exposures
    The condition has persisted for a significant period of time
    Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome (i.e. increased sensitivity)
    The symptoms improve or resolve completely when the triggering chemicals are removed
    Responses often occur to multiple chemically unrelated substances
    Symptoms involve multiple-organ symptoms (runny nose, itchy eyes, headache, scratchy throat, ear ache, scalp pain, mental confusion or sleepiness, palpitations of the heart, upset stomach, nausea, diarrhea, abdominal cramping and aching joints).

Treatment

It has been suggested that a multidisciplinary approach be taken to treating this condition that takes into account peculiar personality traits often seen in affected individuals and physiological abnormalities in sensorary pathways and the limbic system.[2]

In various studies, about one half of the patients who seek medical treatment for symptoms of MCS meet the criteria for depressive and anxiety disorders.[17] Because many people eliminate whole categories of food in an effort to reduce symptoms, a complete review of the patient's diet may be needed to avoid nutritional deficiencies.[40]

Epidemiology
Epidemiological data from three states put the prevalence of chemical sensitivity in 1999 at 16% to 33% of the general population, 2% to 6% of whom have already been diagnosed with MCS.[41] Women complain of MCS significantly more often than men, and most patients are 30 to 50 years old at time of diagnosis.

History

MCS was first proposed as a distinct disease by Theron G. Randolph in 1950. In 1965, Randolph founded the Society for Clinical Ecology as an organization to promote his ideas about symptoms reported by his patients. As a consequence, clinical ecology emerged as a non-recognized medical specialty.[46] In 1984, the Society for Clinical Ecology changed its name to American Academy of Environmental Medicine (AAEM). In the 1990s, an association was noted with chronic fatigue syndrome, fibromyalgia, and Gulf War syndrome.[41]

In 1994, the AMA, American Lung Association, US EPA and US Consumer Product Safety Commission published a booklet on indoor air pollution that discusses MCS, among other issues. The booklet further states that a pathogenesis of MCS has not been definitively proven, and that symptoms that have been self-diagnosed by a patient as related to MCS could actually be related to allergies or have a psychological basis, and recommends that physicians should counsel patients seeking relief from their symptoms that they may benefit from consultation with specialists in these fields.[47]

[Naman]

Thankyou for the quoted information.

[Jhanananda]

My goal in this post is to make public recent findings before death.  As many of you know I came down with a severe lung infection almost 2 years.  At that time I garnered the diagnosis of Chronic Obstructive Pulmonary Disease (COPD), even though I was not a smoker.  I also received a referral to several other doctors, so I acquired 5 more.  Lots of tests later, I could see that none of them expected me to live much longer.

I recall at the moment of "infection" I had left my van, which I lived in at the time, and was parked at the curb in a commercial neighborhood, to do something, I cannot recall.  However, I do recall seeing the neighborhood was full of smoke from one or more smoldering hearth fires, and I could tell from the offensive smell of the smoke at least one of those hearths was burning elm-wood, which is a local wood, considered trash, because it produce such an offensive smelling smoke.

That night I coughed none stop until I called a friend that morning to transport me to the ER.  They conducted an x-ray which revealed several sights of damage.  Days later blood tests were conducted by my allergist who had concluded that I most probably had acquired a fungal infection.  He prescribed an anti-fungal medication to be taken 1 does per day for 7 days. The box said it was a medication used to treat anthrax."  I looked up the medication on Google, and found that it could lead to kidney disease.

After the medication cycle I did have some recovery, but I was still very ill.  A friend invited me to move into a vacant travel trailer in her yard, and provided me with a power cord.  I moved right over to her yard.  I also asked a friend to take me to Walmart where I purchased a HEPA filter, because it seemed reasonable to filter out the allergens in the air that I would breath.  I found as long as I remained within 2 feet of the HEPA filter 24/7, with all of the windows and doors closed, then I had continual recovery, which took 2 months.  After that I had 2 relapses, the last of which the ER doctor found I had kidney failure.

So, 2 years into slow, but sure recovery I can conclude that the HEPA filter has done more for improving my health than anything I have done in my life that has been dedicated to optimum health for 45 years.  However, I have been back in the ER with respiratory, and/or autoimmune issues two more times that year since recovery; and 4 times now this year.

A few days ago I began to feel very ill, even though I had been in my HEPA filtered environment with a new HEPA filter for about 18 hours.  Not understanding why I felt so bad I drove to the ER.  They found all my vitals relatively normal, but marginal; however my blood sugar was 2 times over normal, but I felt profoundly ill.  I have had a blood sugar at 200 or higher without feeling as bad as I did that day. After 4 hours I had sufficient recovery to be released.  I drove to the Salvation Army where I picked up some surplus donated perishables, and drove back to the park.

At the park I started to feel severely ill again.  During my 4 hour stay in the ER I pondered my current ill health, and why the HEPA filter did not seem to work that day.  I also had observed that there was a control burn in the nearby forest, and there was cloud cover with an approaching storm.  I reasoned that there must have been elevated levels of organic vapor in the air that was being held in by the cloud cover, which a HEPA filter is not going to remove.  I also recalled that one of my DIY air purifiers had activated charcoal, which I had added to see if it would improved my health.  Since I built it last March I had found that DIY air purifier made me feel healthier, and had recovery faster, than just a HEPA filter only. 

However, feeling bad after only a 1/2 hour from the ER, I checked my blood oxygen concentration with a pulse oximeter. I found my blood oxygen concentration was at 50%.  I was experiencing a dark halo around my vision suggesting unconsciousness was coming soon.  So, I struggled to get my current model air purifier running, and put on the respirator mask.  I found my blood oxygen concentration rose to 98% (my normal) within minutes.  I remained resting with the air purifier running until I had full recovery.  It took only an hour.  I now use it 24/7.

Sadly, the medical equipment industry does not offer any air-filtration equipment for people with COPD; and none of my medical doctors, and ER doctors, seem to understand my auto-immune problems.

Conclusions:  The original lung infection from 2 years ago was most probably caused by a severe allergic reaction to air-borne combustion byproducts, among other things. HEPA filtration of air is insufficient to remove all of those byproducts of the combustion of wood to maintain my health, but it is a partial solution,  Adding activated charcoal to my air-processing system appears to be a complete solution.  We will see if I have full recovery.  I feel much better now, and am now designing modifications to the 3 air-purifying systems that I use to include activated charcoal.

[Alexander]

Hello Jeff,

I hope you are feeling better after going through all this! Are you on Medicare? Do they give you adequate care? The only other thing I can think of is perhaps relocating, to another state, or even to another country with socialized medicine, where perhaps you could escape the pollutants and get better treatment. Do you think you might fare better in CA, OR, or CO?

While I am not hastening the arrival of death just as you are, I for one ultimately look forward to it. Perhaps recompense will finally come then, leaving the difficult adversities of this experience behind at last. :)

[Jhanananda]

Hello Jeff,

I hope you are feeling better after going through all this! Are you on Medicare? Do they give you adequate care? The only other thing I can think of is perhaps relocating, to another state, or even to another country with socialized medicine, where perhaps you could escape the pollutants and get better treatment. Do you think you might fare better in CA, OR, or CO?

Thank-you, Alexander, for posting your concern for my welfare.  Actually I have been on AHCCCS for the 20 years that I have dropped out of society in pursuit of truth.  AHCCCS has actually provided me, as a poor person, with excellent medical health.  In fact in the last 2 years of severe health issues I have surely cost US American socialized medicine great deal of money.

By the way, my last trip to the ER, which was last week, the EKG tech who did an EKG on me, said,"Did you know that Prescott often has the highest pollen levels in the nation." 

I heard that 3 years ago from their respiratory therapist when she was giving me a breathing treatment.  I have to thank her, especially, and him as well, for being the only health professionals in Prescott, AZ, who told me that.  To date, none of my physicians told me that, which alerts me to the fact that the AMA might not be doing any of us a favor.

Since then I have been paying a great deal of attention to air quality in Prescott, AZ.  I have found that they were right, Prescott has phenomenal levels of pollen during the warmer part of the year, but not during the winter, when I have my worst respiratory problems.

I also found out that during the sunny half of the year Prescott often has extremely high levels of ozone (O3), making Denver, which is famous for its extremely high levels of ozone, a wise place for the people with respiratory problems in Prescott, AZ, worth considering moving to.  For your information, ozone (O3) is a well documented respiratory irritant, which should make us all question why most air purifiers offer ozone.

With further investigations into my health problems, and having studied the local fungi for edibles, and I have found a larger variety of fungi in Prescott, AZ, than anywhere in the western states that I have been in since starting my study of edible fungi, I have had to conclude that fungal spores have to be part of the air-borne allergens that cause the levels of respiratory problems in Prescott, AZ.  However, sadly, air quality monitoring station generally do no measure levels of fungal spores in the air we all breath.  But spores are more a problem in the fall, and before the first frost.

However, during the darker half of the year my respiratory problems have been clearly linked for me now to air-borne organic by-products of the combustion of wood, from people in Prescott, AZ heating their homes with wood, plus the national forest here conducting control burns every fall.

I moved here 10 years ago to get away from industrial pollution while I waited for the next archaeology project I could work on.  I have found massive allergies here, which have been caused by pure mountain air.

I did find traveling to treat my allergies worked.  I have done it since the mid 70s.  It worked very well until I arrived here in Prescott.  Along the way I have spent large amounts of time in California, Colorado, and Arizona.  I also traveled around the world as an adolescent.  I have never found a place where I do not experience allergies.  I simply come from the conjunction of two families with allergies, so genetically I got a double LL for allergies. 

Realizing that Prescott is the worst place that I have found on this planet for my autoimmune system I did not just leave here, I decided that I would use Prescott, AZ as my perfect storm to develop a system whereby I can treat my allergies allowing me to live anywhere.  I am now prepared to leave Prescott, AZ, because I know have a much better idea of the allergens that cause me problems; however, I am still developing a suit of respiratory equipment, which is progressing well, but will need a perfect allergen storm to be tested in.

While looking for places to move, I have seriously considered moving to Cuba, which has excellent social medicine, and is only 50 south of Florida.  I have also found a valley in Columbia which as ideal looking weather, which is worth investigating.  I have also seriously considered moving to Iceland, because I like their politics better than any country that I have investigated.  It seems to me that the people of Iceland are simply more intelligent than most other nations.

While I have traveled through Oregon several times, and I have spent weeks there, I have not spent enough time there to know whether it would be better or worse for me, but with a robust suite of respiratory equipment I am getting to the point that I can start traveling again, and I plan to spend more time in Oregon to see how well my health is there, if I live that long.

While I am not hastening the arrival of death just as you are, I for one ultimately look forward to it. Perhaps recompense will finally come then, leaving the difficult adversities of this experience behind at last.

Well, I too do not hasten death, but having traveled out of body for decades, then I know what death is all about, so I do not fear death, but look forward to it.  I am definitely done with life in a body, and thus do not expect to return again to biology.

[Jhanananda]

As this record shows, two years ago I became very ill with a lung infection.  At that time it seemed reasonable to me to purify the air I breath.  In two months I moved from my death bed to mobility.  My health continues to improve directly proportional to how much, and how well, I purify the air I breath.  I have come to realize that both HEPA filtration, and activated charcoal are necessary for continued, and improve, health. 

Forty five years ago I made a radical change in my lifestyle.  At that time I took up a contemplative life, which as you know has been most fruitful.  At that time it seemed reasonable to take up a lifestyle that was also based upon optimum health.  The concept of optimum health that I embraced was based upon pure food, pure water and pure air, which seemed reasonable to me. I have spent 45 years honing that concept based upon observed health. 

Having had a lifetime of respiratory health issues I moved to a mountain community, where the air is pure.  Unfortunately, my health took a steep nose dive after moving here. I have found that I am severely allergic to pure mountain air; and filtering the air I breath has produced the most radical improvement in my health in the 45 years of the pursuit of optimum health. 

Six months before I moved here I had a full physical.  At that time the doctor told me, "Mr. Brooks you have the cardiovascular system of an athlete, and all of your organs are functioning at optimum."

Six months later I moved to Prescott, AZ, a mountain community with no mining or heavy industrial activity, and no highway.  After arriving here I was in and out of the ER about every 2 months.  After six months here I went to a doctor for a full physical.

He said, "Mr. Brooks, you are full-on diabetic with a blood sugar 2.5 times over normal.  You also have high blood pressure."

The only change in my life was the move to a mountain community with pure, fresh, air.  After two years on purified air, my health has improved.  My blood pressure is normal most of the time, and my blood sugar is almost normal most of the time.  The improvement in my health is definitely directly proportional to how much of the air I breath is purified, and how well it is purified.

Last week I was back in the ER.  I have only been in the ER 4 times this year, which is a radical improvement.  Up until last weekend I had been depending primarily upon HEPA filtration of the air I breath.  Before driving myself to the ER, because I observed severe malaise arising, I had been in HEPA filtered air for 18 hours.  In the ER there my malaise did not exhibited respiratory involvement, nor high blood pressure.

I now realize that, while HEPA has definitely solved part of my health problem; however, not all of it.  During my recovery in the ER I realized that HEPA filtration is not a complete solution for my health.  I reasoned that activated charcoal would also have to be added to my air purification system.

Thirty minutes after I was released from the ER, I developed severe lack of oxygen concentration in my blood.  I parked my van, and moved into my living compartment, and powered up an experimental air purifier that I had been developing for 9 months  It included activate charcoal.  Once I was breathing through the powered respirator that I developed, which included activated charcoal, my blood oxygen level  rose from 50% (severely bad) to 98% (athletic level).

It has become clear I need to breath purified air for health; and pure mountain air is not pure enough.  US American health has been in decline since the 50s.  Is it possible that the over-all health of US Americans, and everyone else in the world, would be significantly better if more people breathed purified air?  I believe that it is reasonable enough that every one who is interested in optimum health should also breath as much purified air as they can accommodate in their lifestyle.

[Alexander]

Hello Jeff,

Still hoping you are feeling well. I would offer you help but you are on the other side of North America! Perhaps your children can help? I am just concerned with all the ER visits!

Have you shared your idea on the effects of the air with your GP? What were his thoughts on it?

[Jhanananda]

I have both an allergist and a pulminologist, as well as a GP.  I have mentioned it to all of them, asked them if the equipment is available, which they said it is not, and they humor me.  The increase in activated charcoal, which I baked out myself, is still working great.

[Jhanananda]

The single best thing I ever did for my health has been to filter the air that I breath.
A woman collapsed and died after being exposed to bushfire smoke as she got off a plane in Australia.

Installing air filters in classrooms has surprisingly large educational benefits

[Jhanananda]

Why cardiologists should be interested in air pollution

Abstract

Despite major improvements in air quality resulting from increasingly stringent legislation, there remains a strong association between daily mortality and current levels of air pollution. Growing epidemiological evidence suggests that many, perhaps the majority, of these deaths are caused by cardiovascular disease.

[Jhanananda]

Here is an interesting article on Why Does Inflammation Seem to Underlie All Sickness?. The article provides some history on medical researchers finding inflammation tends to underlie most diseases. We have seen this hypothesis before.  I am convinced that it is air-pollution that is the cause of chronic inflammation, which leads to disease.

Since the industrial revolution coal has been burned to fuel it as a primary fuel source, and coal is toxic.  However, we have the collapse of many civilizations throughout history.  I think it is reasonable to consider that you put too many people into a relatively small space, like a city, and combine that with burning wood, and eventually, the air pollution is going to start killing the inhabitants.

Here is a research report from 2012, The inflammation theory of disease
The second link also says gee inflammation seems to be behind lots of diseases, so maybe it is a gene that can be turned off.

Another interesting research paper that examines the psychiatric and neurological side of chronic inflammation. From inflammation to sickness and depression: when the immune system subjugates the brain

Another article examines how exercise reduces inflammation.  They found about a third of the benefit of regular exercise is attributable to reduced inflammation
: Raw and Red-Hot Could inflammation be the cause of myriad chronic conditions?

Another article links inflammation all sickness and depression, Why Does Inflammation Seem to Underlie All Sickness?

Another article attempts to define inflammation: Inflammation, Explained: What It Is and How It Affects Your Health