My Personal Story - by John Lea
I had problems with antiseptics even during my childhood in the 1940s and 50s. In those days these were generally phenol based including chloroxylenol ('Dettol') and trichlorophenol ('TCP'). My mother recalls using these on my childhood cuts and grazes only to find that they would became worse. Later on a purely dermatological sensitivity to these chemicals led to runny eyes and respiratory problems, especially when near to people using TCP. I was very fit as a teenager, becoming proficient in the stamina events of cross-country, long distance and fell running. I often ran 50 or 60 miles a week in training. Whether this was because I had large heart and lung capacity or all this training caused the growth of these organs I cannot say. All I know is I never got tired or fatigued even after several hours running and my pulse never went above 120.
It may have been a mistake to become a pharmacist with my already obvious problems with biocides but my father wanted me to follow in his footsteps and in those days that's what most sons did. During my studies my parents broke apart and I never did take over in his chemist shop, following a career in hospital pharmacy instead. Right from the start I had problems with phenolic disinfectants but at least they had a strong odour which meant I could try and avoid areas where they were in use and a few minutes exposure, though uncomfortable, didn't cause any long term problems.
I continued my career in hospital pharmacy, mainly as a ward pharmacist talking to patients about their drug treatment, moving from West Yorkshire to Shropshire in 1974. I was still very fit and travelled the 30 miles round trip every day by bicycle all the year round. Sometimes I had trouble with traffic fumes but this didn't seem to be long-term threat to my health. Looking back the combined exposure to these two irritants over many years could have been the cause of my later problems.
The use of phenolic disinfectants declined, partly because of an objection to their smell. I am sure most of you remember the all-pervading antiseptic smell of hospitals up to the early 1980s. This was generally because of the use of the product 'Stericol' as a general floor and work surface disinfecting agent. I was glad when these were phased out; it was getting to a point where certain parts of the hospital, theatres, ICU and casualty, were so bad that my eyes streamed continuously whilst I was there. What I didn't know was that what replaced them was, as far as my health was concerned, much worse.
Over the next few years I noticed that I was feeling more tired as the week progressed but I put this down to getting older and didn't push myself as hard on my bicycle rides. I always recovered at weekends except when it was my turn to provide out-of-hours cover. Eventually the tiredness and a developing muscle aching became so bad that I was taking the occasional day off work and needed to find out what was causing the problem. I was sent to see various consultants and even investigated for MS (one of my symptoms is numb patches, especially on my legs). Eventually, having found nothing which could cause my symptoms, I was diagnosed as a depressive and prescribed tranquillisers. This is in common with many ME and MCS sufferers. No-one who knows me could ever think of me as depressed. I am very even tempered and even now with all my problems I still have an optimistic outlook on life. I didn't take the tranquillisers for long; all they did was make me feel tired even at weekends. I stopped taking all prescribed treatment and was written off as 'neurotic'.
Without a diagnosis of my condition I could not take any more than the odd-days sick-leave without prejudicing my future employment so I struggled on. The continuous tiredness, all over body-aching and weakness made it difficult to continue as a ward pharmacist and I reluctantly changed my role to supervision of the dispensary.
What no-one had investigated was that the cause of some of my symptoms was asthma. How could this be? My normal peak-flow was, and still is, 680, very high even for a 20 year old. No-one thought to measure it when I was feeling ill; after all I didn't report shortness of breath and I was not wheezing or even coughing that much.
It was only when I was feeling particularly ill one day in 1992 when a chest physician happened to be passing that the first steps towards a diagnosis were made. My peak flow was unrecordable at first and even after an hours recovery in the fresh air was still below 200. This might not seem too bad for a severe asthmatic with a normal peak flow below 300, but when your body is used to having lungs with a vital capacity 30% above that of a normal person and a peak flow of nearly 700 reducing your lung function to 200 or 30% of what it expects causes severe hypoxia. It was no wonder I was feeling tired, dizzy and aching all over.
So, one possible diagnosis of my condition was asthma, but what was causing it and why was it atypical? Being fairly well clued up for a chest physician of that period he suspected that the cause might be work-related. He was the first to suggest this even though, in retrospect, it should have been obvious from the start. I was given a peak-flow meter and asked to make recordings every two hours for several weeks, also recording my assessment of my health on a scale of 1 to 10. Plotting these recordings showed that I started each week feeling well with peak flow readings above 650. As the week progressed these readings fell, but often not till Wednesday afternoon. Thursdays and Fridays were the worst with readings as low as 150. I recovered at the weekend. The detective work had started!
Unbeknown to me the chest physician was in touch with Dr. Sherwood Burge, an occupational health physician at Birmingham Chest Clinic. Without my knowledge they determined that the cause might be chemicals in the agent used to clean and disinfect the pharmacy floors, usually during Wednesday morning. I didn't like the smell of this fluid and it did irritate my eyes but it wasn't phenolic so I had no suspicions about it. They obtained a sample of the fragrance and detergent used in this cleaner and substituted this instead for cleaning the next week. I didn't know about this but I did notice that I was feeling much better at the end of the week than I had done for a long time. Success!! We now knew the likely cause and could do something about it. Just to confirm the diagnosis I was admitted to East Birmingham (now Heartlands) Hospital for challenge tests with the various ingredients in the cleaning agent. This proved that the causative agent was benzalkonium chloride. This belongs to a group of chemicals called quaternary ammonium compounds. They include other commonly used biocides such as cetrimide, cationic surfactants commonly found in washing powder, fabric conditioner, floor glass and furniture polishes and other industrial and domestic cleaning and disinfectant products. At that time I didn't appear to have problems with any of these other substances; that came later. [Richardson/Burge Paper].
What had made things worse was the attitude of the domestic applying this cleaner to the floor. It was supposed to be diluted 1 in 10 and the container clearly stated 'not to be used as an aerosol'. So what did she do? She used it neat ( 'it makes the place smell nicer and the floors shinier') and to save time instead of mopping it on she used a floor scrubber and squirted it onto the floor using a hand held spray bottle. Result - aerosol droplets of neat cleaner suspended in the air for several minutes. The cleaning agent was changed to one not containing benzalkonium and she was instructed to follow the instructions in its use ('mutter,,mutter. That stupid idiot has made my job harder, the place doesn't smell as nice and the floors aren't shiny anymore').
For a few weeks this worked - I was feeling much better. However, the former floor cleaning agent was still in use in most other parts of the hospital, including our pharmacy sterile unit, so I found myself confined even more to the dispensary area only. Not only that, the domestic was slowly beginning to try and get away with using the floor cleaner in other areas of the pharmacy, partly with the connivance of the pharmacist in charge of the sterile unit.
There was good reason for this and I don't and still won't blame anyone for my subsequent problems. The hospital had suffered several outbreaks of MRSA and disinfection of floors and work surfaces, using a cationic surfactant and biocide such as benzalkonium was, and is, part of the fight against this dangerous infection in hospitals. Some people argue that all that is needed is common sense hygiene but things have gone too far in most hospitals for this to be fully effective. It is also necessary to use these chemicals for surface sterilisation of surgical instruments which can't be sterilised using heat. Glutaraldehyde can also be used for this but even then there were worries about it causing wide-spread undesirable effects on people working with it.
So I now had a cause for my symptoms and the treatment was obvious - avoid benzalkonium. Easier said than done, especially in the hospital environment. It found its way into the dispensary area through the air conditioning system from the rest of the pharmacy and from other units, such as outpatients, on the same floor. Not only that, the air-conditioning system itself was being treated with agents to prevent the growth of moulds and bacteria, especially Legionella. Guess what was in it? benzalkonium chloride. The hospital authorities were very good and wanted to keep a senior member of their staff at work, if at all possible. They equipped a new office isolated from the air conditioning system where I could spend some of my time when it wasn't necessary to directly supervise the work of the department. It was at this time that I started to seriously look at the use of computer software in hospital pharmacy though my interest in this actually went back to 1976 when the first PCs were introduced. I had recently studied for a second degree at the Open University in maths and computing, originally to give me something to do to replace my now impossible outdoor pursuits. Now it was to become the basis for a new career.
Unfortunately I still continued to get worse. By 1996 I was coming into work on Monday, feeling ill by lunch time, going home and not returning till Thursday, when again I lasted only a few hours. I started to try and do some of my computing work at home to compensate for this. I began to notice that those members of staff, mainly young and female, who wore perfume were also causing me discomfort at the least. There seemed no way I could carry on any longer and I was warned more than once that I literally could die within the next six months of a massive anaphylactic reaction if I didn't stop all exposure to the triggering agents. I was old enough to accept early retirement on the grounds of ill health without a significantly reduced pension so I did so in April 1996.
The good thing was that the software development I had started 3 years before was incomplete and I continued to work on this for another 3 years as an independent contractor for my former employers. I could do this without any personal contact with the hospital. It took at least a year for me to start really feeling better and it was only then that I realised how ill I had been. I was lucky in that when we first arrived in Shropshire we had bought a rural property in the days before there was much demand for these places so we got it fairly cheap. With my condition this was now an ideal place to live, away from all the triggering agents. We could never have afforded to move to such a place given the prices they now command.
So I was getting better but it soon became apparent that this was only if I stayed away from all triggering agents. These were rapidly spreading to include all quaternary ammonium compounds and cationic surfactants and there seemed to be a synergistic effect when these were combined with artificial fragrances. Soon, artificial fragrances on their own were giving me trouble. We gave up using all products containing these chemicals including virtually all washing powders, cleaning products, hair shampoo, soap, sun lotion and other cosmetics.
Any contact with these chemicals was now causing an obvious reaction. Now I really was getting asthma and rhinitis as an initial reaction and this was followed 8 to 12 hours later (often in the middle of the night) by a much more severe secondary reaction with severe asthma and shuddering or cramp in virtually every muscle in my body making me cry out in pain and my heart rate goes higher than it ever did when I was running or cycling. Fortunately this usually only lasts for a few minutes - I don't think I could stand it for much longer. The asthma is only partly reversed by Ventolin and my muscles and bones continue to ache for several days after each attack.
There were still some people who said that it was smelling these products that made me react. Yet our garden is full of perfumed flowers - they don't affect me. How does this theory explain the secondary reaction which more often than not wakes me from my sleep?
It slowly got to a point where I couldn't risk any contact with other human beings. They exuded artificial fragrances and washed their clothes in modern detergents. Furthermore the fashion for so called 'air fresheners' was starting to take off so I couldn't visit other peoples houses or public buildings, especially public toilets. I couldn't go shopping or travel on public transport. Holidays were impossible if they involved any form of travel. We have always gone camping on holiday and for a time, provided we chose quiet sites, we could continue to do so for a few days in the summer but eventually even this became impossible.
I was supposed to visit Doctor Burge's clinic for an annual follow up but this was in the middle of Birmingham and there was no way I could cope with city air any more: I gave up going. Even visiting my own GP is a risky business. I stand outside until he can see me, even if it is pouring with rain. His waiting room is full of patients and receptionists who all seem to have applied new perfume or after-shave especially for the occasion. Dentists and opticians carry a similar risk.
I just about survived attending the weddings of my two daughters and even managed the father of the bride speech at one of them but this was several years ago and I was ill for many days after each event. Recently my mother became ill after a stroke. She continued to live at home with carers visiting several times a day but their presence made the environment impossible for me. Eventually she was admitted to hospital but I couldn't visit her and I didn't dare risk attending the funeral. I don't know how long it will be before visiting my grandchildren becomes too high a risk; they live on a housing estate. I dare not think about the almost inevitable event, as I grow older, when I need to visit hospital for treatment or even worse, an operation.
Eventually the software I was developing for my former pharmacy department was completed. However, one of these program suites had wider applications which could be used by other hospitals. This calculates the nutritional requirements of patients being fed intravenously. Using contacts I still had in the profession (especially the sterile unit pharmacist I mentioned earlier) I was able to persuade a large pharmaceutical company to sponsor further development of the software and distribute it under license to users of their products. Again, this was possible with the only contact being via telephone or the Internet.
There has recently been a worrying development in my condition. I am getting serious secondary reactions without a primary and my irritable bowel symptoms are now continuous. Somehow I could be coming in contact with a triggering agent by a route other than inhalation. We organically grow most of our food but need to buy in flour, pasta, eggs and dairy products and fruit in winter. We also draw water from a ground-water well. Maybe the food or water is contaminated with one or more of these chemicals. For instance, the practice of spreading sewage sludge on the fields could be contaminating the ground water with traces of household chemicals, such as fabric conditioner or fragrance, still in the sludge after treatment. There only needs to be tiny amounts to affect me. We could get connected to the mains water supply but I know this is drawn from the same ground water and treatment probably won't remove these chemicals either. I tried changing to artesian sourced bottled water for a time but this didn't make much difference.
Since I first started writing this story I have gone further with the water treatment. We now filter our drinking and cooking water to remove organic and heavy metal contaminants and replace the mineral content using 10ml of concentrated Himalayan salt solution in 5L of the nearly pure water. Since starting this nearly 6 weeks ago I have only suffered one mild asthma attack, and this was after accepting a delivery from van driver soaked in what seemed gallons of after-shave. Maybe my theory about the minute amounts of detergent and fragrance in ground water is correct.
As I have already stated, I don't blame anyone for the cause of my condition. The use of antiseptics and disinfectants has saved millions of lives over the last 150 years. It is unfortunate that a few of us have problems with them. There are people who say that if hospitals had paid more attention to hygiene and cleanliness and antibiotics had not been overused or prescribed for inappropriate infections then the MRSA bug would never have developed. Well, maybe so, but it has happened and now we have to cope with it. Life isn't like a computer game. If things go wrong because you made the wrong decision you can't load an earlier save and try again.
However, there is a different argument for most of the other chemicals which aggravate my condition. Most of them are unnecessary. I don't even consider they add much to most people's lives. We live in a consumer society created by a capitalist system which can only exist by continuously creating new products which they have to persuade people to buy by claiming they will improve their lives. The big industrial and chemical companies would collapse if they couldn't continually convince us that we can't live without their latest product.
This has many deleterious effects on both people and the environment:
Don't think I want to return to the 'good old days' before the industrial revolution. Many of the developments over the last 250 years have been for the good of both the earth and mankind. It also is the case that, without high consumer demand we couldn't have mass production and most products would be too expensive for the average person. It is just that many of these products are unnecessary.
- The more products you make the more waste products end up polluting the earth and oceans.
- The more 'new and improved' products you persuade people to buy the more they need to throw away the old ones causing even more pollution. Recycling helps but it is never 100% effective and costs more than using the raw materials - this may change in the future as the world's resources run out.
- Most of the products of the chemical industry end up in the sewers or the air. They don't get recycled. Many of them are not, or only slowly, biodegradable so the levels of contamination increase and spreads, even to the most remote parts of the earth.
- The more products you make the more of the world's resources are depleted, especially coal, oil, trees, plants and metal ores. One day these will become scarce and we might need them for more important uses such as medicines and essential electronic goods.
- As the consumer society spreads to the developing world new opportunities for profit are seen by global companies. This just makes the other four effects even worse.
Do we really need to ruin people's health and damage the environment just so the industrial and chemical companies can grow even larger? I know this can't be done overnight, the world's economy would collapse if we tried it, but maybe we should look a little more at the future rather than the present?