Post by Arun Nagrath on Jun 28, 2011 23:56:36 GMT
Hi guys, I am thinking of using the following overview of mine as an Information Leaflet for Doctors and Dentists. What do you think? Can we improve it?
Arun's overview of Breath and Body Odour
If you are a doctor or psychiatrist and you have been referred to this link by your patient it is because your patient's condition is poorly understood by scientists and poorly documented by medics.
For instance, you may have recently seen a patient who you can't smell, or can smell but not extremely strongly, and yet he claims that people can smell him 20 feet away! Furthermore, he has some bizarre notions about other people being allergic to the odour he gives off! He claims they cough, or develop runny noses or get sinus headaches or sneeze or get itchy eyes or get worsening of their breathing.
Does that sound familiar? Well, you have come to the right place. The patient is probably not delusional at all. These symptoms/ phenomena are manifestations of a type of human odour condition which has not yet been documented in medical text books! Many of us on this site have very similar symptoms.
Many people wrongly assume that Chronic Breath or Body Odour conditions are well researched and well understood. They assume that their doctor or dentist will have an expert knowledge of the cause and treatment of their condition. After all, Halitosis (bad breath) and Bromhidrosis (smelly sweat) are recognised medical conditions.
The truth of the matter is that doctors and dentists generally know mainly about the types of odour conditions which are associated with disease (pathology) or with hygiene issues.
For instance, a doctor will be able to tell you that there are medical conditions such as liver failure, kidney failure, lung abscess etc that can cause breath odour. Similarly, a dentist will be able to tell you that gum disease, tonsil infections, ENT (ear, nose, and throat) infections, dry mouth etc can cause breath odour. This is why the dentist and doctor should be the first port of call for getting the odour condition investigated.
So what about chronic odour conditions where the patient does not have any associated diseases? Well, for body odour the doctor will focus on hygiene (bathing often, changing clothing often, use of deodorant etc). Similarly, the dentist will talk about flossing the teeth, scraping the white/ brown plaque from the tongue, using antiseptic mouth rinses etc.
So what to do if you have a very marked problem and none of these measures really helps? What is the cause? Well it does appear that many of us on these sites appear to have some hitherto unresearched disorders related to their metabolism.
Having done some research myself in the past, I believe these are infact enzyme disorders (yes, more than one!) which bear some similarities to Trimethylaminuria (Fish Odour Syndrome) in that they are systemic but they have yet to be documented. This means that they do not have a name yet!!
Believe me, this lack of research is not particularly surprising since these are rare enzyme disorders. I believe they result in metabolites which cause secondary alteration in underarm flora (to produce bromhidrosis) and/or tongue flora (to produce halitosis). The odour can similarly come from any part of the body that has a high concentration of sweat glands.
Breath odour and body odour are pretty common conditions however there are some types of odour conditions which are pretty rare. For instance, faecal breath and body odour that can fill an entire room in a few minutes is likely to only occur in perhaps 1 in 10,000-50,000 people.
I have been involved in odour research in the past and let me assure you that it is very difficult to research rare enzyme disorders which do not cause serious illness but only result in odour. Part of the reason for this is that, without preconcentration, the odour concentration we produce is often below the limit of detection for all but the most sophisticated of analytical instrumentation.
Also, a mass chromatogram of human breath will reveal thousands of peaks, each peak corresponding to a different chemical entity. How will the scientist know which is the culprit chemical out of these thousands of chemicals in our odour! Only now, scientists are constructing a human breath metabolome which lists all the chemicals that have been found in human breath. So hopefully, in the future we will have a better idea of what is 'normal' in terms of our gaseous emissions.
The reason why the culprit enzyme has not been identified is because it is usually not the case that it is missing altogether. If this were the case then the research would be easy. Instead, there are usually subtle mutations that make an enzyme inefficient. It would be wonderful if scientists had the technology to sequence every enzyme in the human body in minutes. However, at present, this may take take years to achieve.
Our enzymes are determined by our genes and it is my belief that there is a genetic basis for most (if not all) of the systemic variety of breath/body odour conditions. Although the completed Human Genome Project allows us to analyse the genes in all our chromosomes, the process is painfully slow so it would not be currently realistic to compare all our genes with non odour-sufferers to identify the culprit gene.
If you are worried about having children, I would say that just because you have this condition doesn't mean that your children will necessarily get it. It depends upon your partner's genes.
Unfortunately, the systemic variety of rare strong odour conditions are difficult to treat but some people have had some success by following unusual diets e.g. vegan diet, low choline diet etc combined with excluding indole-producing vegetables from the diet. They have combined such diets with the use of supplements such as probiotics, chlorophyll, and used low PH body washes etc.
It is my belief that for the systemic variety (means passed round the body via the blood) of breath/ body odour, if you do not get the diet right then no amount of supplement or body wash will help greatly since you are still getting high levels of smell-forming metabolites being produced from the diet.
I encourage all members who succeed in reducing or eliminating their odour to post what they have tried in a link on the left side of the screen called "Success Stories".
However, please note that we do not all have the same thing wrong with us! This is evidenced by the fact that some people have breath odour, some have body odour, some have underarm odour, some have foot odour and some have groin odour.
These may be local (and hence more easily treatable by creams, peroxide mouth rinses etc) or they may be systemic (means passed round the body via the blood). Also, they may be constant odours or they may be intermittent. Furthermore, the odour can smell of different things e.g. it can be faecal, smell like normal body odour but 100 times stronger, it can have an onion smell or smell like garbage/ rotting vegetation.
So, as you can see, what works for one person may not necessarily work for another person. At this stage, a lot of the treatment is down to simple trial and error. However, I would like all members to complete a detailed database survey which I plan to introduce in summer 2009.
The aim of this survey is to try to establish what treatments are likely to be successful for your particular type of odour condition. In this way, in the future, we will be able to suggest a protocol for dietary or drug or surgical treatment depending upon your particular type of odour condition.
Such a Protocol might for instance have dietary modification as a first step. It may employ products to modify tongue flora, gut flora or underarm flora as a second step. It may use a variety of different products for further steps. Lastly, it may involve surgery as a last step. Surgical measures must only be tried when all else fails.
The Patient Database (what works, other diseases present etc) will be based upon actual member experiences. This will lead to a Treatment Protocol for ALL undiagnosed Breath and Body Odour conditions. I am hoping we have this protocol in place by June 2010 (fingers crossed). I will then be approaching NICE and NIH to get it rubber stamped. That is where we are going!
Generally speaking, doctors do not know how to treat strong peculiar odours where no organic disease is present. They have noted that these patients have a high incidence of suicide and are generally socially crippled by their condition. For this reason, if patients can not smell their own odour (often the case) then the doctor or dentist has been trained to deny the patient has a smell and even to insist that it is all in the patient's mind. They will also counsel the patient's relatives to deny there is a smell.
Unfortunately, this approach is rapidly becoming outdated since patients joining message boards such as this can see from everyone else's replies that a conspiracy is indeed in place.
They feel angry that their doctor and relatives and even friends have lied to them (even if it is supposedly for their own good). They feel particularly angry that their intelligence has been insulted. After all, if a person can not smell their own odour but it is a really strong odour then surely that person will receive feedback from other people about their odour several times a day wherever they go.
This odour denial approach was more successful in our parent's generation but people are more aware of everything these days and the general public is also more vocal than before about our odours.
Another problem with the odour denial approach is that it delays the process of us coming to terms with our problem hence prolonging our anguish. After all, how can we begin to come to terms with our condition when doctors, and dentists tell us it doesn't even exist and is probably all in our minds! This can make the patient feel ridiculed or even delusional.
Alternatively, the approach can give the patient the impression that the doctor regards the problem as trivial and isn't interested in the patient's welfare and can't be bothered ordering tests for a condition where no serious physical illness is present.
I think you can see now why most patients visiting their doctor about these odour conditions feel very disappointed with the visit, especially as it is so hard for many of us to talk about these conditions in the first place.
However, although doctors and dentists might tell us little porkies, we should not always assume the same to be true of family or friends who can not smell us.
People who see us regularly for long periods will rapidly loose the ability to smell us. If your friend who you meet every day wears the same aftershave or perfume daily then you too will loose the ability to detect your friend's perfume. Well, the same applies for detecting our odours! Believe me, this is true! It is especially true if you have a live-in partner, but often occurs with family too if you live in a small apartment where the odour is constantly present in all the rooms.
Patients with strong odour conditions which lack an organic cause will often end up being treated by psychiatrists for depression, social anxiety or phobic avoidance of society. Physicians will occassionally not be aware of the variable nature of the patient's odour especially if the patient is seen in a clinic where he/she may be seen by different doctors each time.
In contrast, a psychiatrist's appraisal will usually involve family members and it will become evident that the intermittent odour condition is very real and not imaginary. In cases where the odour is intermittent but occurs infrequently and there is no history from family, there is a very real danger that the patient may be wrongly diagnosed as having imaginary breath/body odour.
It must also be noted that eating red meat, dairy products, stress, consuming alcohol or coffee can all make the odour temporarily hugely worse thus some odour conditions can have huge daily variation.
For such reasons I do not believe delusional (imaginary) halitosis is as common as some dentists might claim. Indeed some dentists who specialize in such conditions may have a special interest because they themselves suffer halitosis. They will sometimes not realize that this may often prevent them from detecting a patient's halitosis!
In contrast, Halitophobia (an exaggerated concern about one's breath odour) is more common and may sometimes be due to odour accumulation in an environment where the sufferer is present for a good part of the day (at home or at work). Other people's comments about the odour many feet away will naturally make the patient feel that their odour is worse than it actually is when the problem is infact due to time-dependent odour accumulation in the environment. However, when it is at it's worst some types of breath or body odour can literally fill an entire lecture theatre in the space of a few hours.
Sometimes the psychiatrist may diagnose ORS (Olfactory Reference Syndrome) which is a psychiatric disorder similar to Halitophobia. This condition is considered by many to be a sub-type of OCD (Obsessive Compulsive Disorder) or BDD (Body Dysmorphic Disorder). So treatment will be the same as for OCD and may involve prescribing SSRI antidepressants such as Prozac or the use of CBT (Cognitive Behaviour Therapy).
As a pharmacist with experience in psychiatry I have found that the advent of these odour-related Message boards has produced a far more effective psychological treatment, and that is Group Therapy.
Just participate in our fortnightly phone conferences and you will experience the empathy and see what I mean. The message boards are a second choice for Group Therapy for those who feel too shy to participate in the phone conferences.
Arun's overview of Breath and Body Odour
If you are a doctor or psychiatrist and you have been referred to this link by your patient it is because your patient's condition is poorly understood by scientists and poorly documented by medics.
For instance, you may have recently seen a patient who you can't smell, or can smell but not extremely strongly, and yet he claims that people can smell him 20 feet away! Furthermore, he has some bizarre notions about other people being allergic to the odour he gives off! He claims they cough, or develop runny noses or get sinus headaches or sneeze or get itchy eyes or get worsening of their breathing.
Does that sound familiar? Well, you have come to the right place. The patient is probably not delusional at all. These symptoms/ phenomena are manifestations of a type of human odour condition which has not yet been documented in medical text books! Many of us on this site have very similar symptoms.
Many people wrongly assume that Chronic Breath or Body Odour conditions are well researched and well understood. They assume that their doctor or dentist will have an expert knowledge of the cause and treatment of their condition. After all, Halitosis (bad breath) and Bromhidrosis (smelly sweat) are recognised medical conditions.
The truth of the matter is that doctors and dentists generally know mainly about the types of odour conditions which are associated with disease (pathology) or with hygiene issues.
For instance, a doctor will be able to tell you that there are medical conditions such as liver failure, kidney failure, lung abscess etc that can cause breath odour. Similarly, a dentist will be able to tell you that gum disease, tonsil infections, ENT (ear, nose, and throat) infections, dry mouth etc can cause breath odour. This is why the dentist and doctor should be the first port of call for getting the odour condition investigated.
So what about chronic odour conditions where the patient does not have any associated diseases? Well, for body odour the doctor will focus on hygiene (bathing often, changing clothing often, use of deodorant etc). Similarly, the dentist will talk about flossing the teeth, scraping the white/ brown plaque from the tongue, using antiseptic mouth rinses etc.
So what to do if you have a very marked problem and none of these measures really helps? What is the cause? Well it does appear that many of us on these sites appear to have some hitherto unresearched disorders related to their metabolism.
Having done some research myself in the past, I believe these are infact enzyme disorders (yes, more than one!) which bear some similarities to Trimethylaminuria (Fish Odour Syndrome) in that they are systemic but they have yet to be documented. This means that they do not have a name yet!!
Believe me, this lack of research is not particularly surprising since these are rare enzyme disorders. I believe they result in metabolites which cause secondary alteration in underarm flora (to produce bromhidrosis) and/or tongue flora (to produce halitosis). The odour can similarly come from any part of the body that has a high concentration of sweat glands.
Breath odour and body odour are pretty common conditions however there are some types of odour conditions which are pretty rare. For instance, faecal breath and body odour that can fill an entire room in a few minutes is likely to only occur in perhaps 1 in 10,000-50,000 people.
I have been involved in odour research in the past and let me assure you that it is very difficult to research rare enzyme disorders which do not cause serious illness but only result in odour. Part of the reason for this is that, without preconcentration, the odour concentration we produce is often below the limit of detection for all but the most sophisticated of analytical instrumentation.
Also, a mass chromatogram of human breath will reveal thousands of peaks, each peak corresponding to a different chemical entity. How will the scientist know which is the culprit chemical out of these thousands of chemicals in our odour! Only now, scientists are constructing a human breath metabolome which lists all the chemicals that have been found in human breath. So hopefully, in the future we will have a better idea of what is 'normal' in terms of our gaseous emissions.
The reason why the culprit enzyme has not been identified is because it is usually not the case that it is missing altogether. If this were the case then the research would be easy. Instead, there are usually subtle mutations that make an enzyme inefficient. It would be wonderful if scientists had the technology to sequence every enzyme in the human body in minutes. However, at present, this may take take years to achieve.
Our enzymes are determined by our genes and it is my belief that there is a genetic basis for most (if not all) of the systemic variety of breath/body odour conditions. Although the completed Human Genome Project allows us to analyse the genes in all our chromosomes, the process is painfully slow so it would not be currently realistic to compare all our genes with non odour-sufferers to identify the culprit gene.
If you are worried about having children, I would say that just because you have this condition doesn't mean that your children will necessarily get it. It depends upon your partner's genes.
Unfortunately, the systemic variety of rare strong odour conditions are difficult to treat but some people have had some success by following unusual diets e.g. vegan diet, low choline diet etc combined with excluding indole-producing vegetables from the diet. They have combined such diets with the use of supplements such as probiotics, chlorophyll, and used low PH body washes etc.
It is my belief that for the systemic variety (means passed round the body via the blood) of breath/ body odour, if you do not get the diet right then no amount of supplement or body wash will help greatly since you are still getting high levels of smell-forming metabolites being produced from the diet.
I encourage all members who succeed in reducing or eliminating their odour to post what they have tried in a link on the left side of the screen called "Success Stories".
However, please note that we do not all have the same thing wrong with us! This is evidenced by the fact that some people have breath odour, some have body odour, some have underarm odour, some have foot odour and some have groin odour.
These may be local (and hence more easily treatable by creams, peroxide mouth rinses etc) or they may be systemic (means passed round the body via the blood). Also, they may be constant odours or they may be intermittent. Furthermore, the odour can smell of different things e.g. it can be faecal, smell like normal body odour but 100 times stronger, it can have an onion smell or smell like garbage/ rotting vegetation.
So, as you can see, what works for one person may not necessarily work for another person. At this stage, a lot of the treatment is down to simple trial and error. However, I would like all members to complete a detailed database survey which I plan to introduce in summer 2009.
The aim of this survey is to try to establish what treatments are likely to be successful for your particular type of odour condition. In this way, in the future, we will be able to suggest a protocol for dietary or drug or surgical treatment depending upon your particular type of odour condition.
Such a Protocol might for instance have dietary modification as a first step. It may employ products to modify tongue flora, gut flora or underarm flora as a second step. It may use a variety of different products for further steps. Lastly, it may involve surgery as a last step. Surgical measures must only be tried when all else fails.
The Patient Database (what works, other diseases present etc) will be based upon actual member experiences. This will lead to a Treatment Protocol for ALL undiagnosed Breath and Body Odour conditions. I am hoping we have this protocol in place by June 2010 (fingers crossed). I will then be approaching NICE and NIH to get it rubber stamped. That is where we are going!
Generally speaking, doctors do not know how to treat strong peculiar odours where no organic disease is present. They have noted that these patients have a high incidence of suicide and are generally socially crippled by their condition. For this reason, if patients can not smell their own odour (often the case) then the doctor or dentist has been trained to deny the patient has a smell and even to insist that it is all in the patient's mind. They will also counsel the patient's relatives to deny there is a smell.
Unfortunately, this approach is rapidly becoming outdated since patients joining message boards such as this can see from everyone else's replies that a conspiracy is indeed in place.
They feel angry that their doctor and relatives and even friends have lied to them (even if it is supposedly for their own good). They feel particularly angry that their intelligence has been insulted. After all, if a person can not smell their own odour but it is a really strong odour then surely that person will receive feedback from other people about their odour several times a day wherever they go.
This odour denial approach was more successful in our parent's generation but people are more aware of everything these days and the general public is also more vocal than before about our odours.
Another problem with the odour denial approach is that it delays the process of us coming to terms with our problem hence prolonging our anguish. After all, how can we begin to come to terms with our condition when doctors, and dentists tell us it doesn't even exist and is probably all in our minds! This can make the patient feel ridiculed or even delusional.
Alternatively, the approach can give the patient the impression that the doctor regards the problem as trivial and isn't interested in the patient's welfare and can't be bothered ordering tests for a condition where no serious physical illness is present.
I think you can see now why most patients visiting their doctor about these odour conditions feel very disappointed with the visit, especially as it is so hard for many of us to talk about these conditions in the first place.
However, although doctors and dentists might tell us little porkies, we should not always assume the same to be true of family or friends who can not smell us.
People who see us regularly for long periods will rapidly loose the ability to smell us. If your friend who you meet every day wears the same aftershave or perfume daily then you too will loose the ability to detect your friend's perfume. Well, the same applies for detecting our odours! Believe me, this is true! It is especially true if you have a live-in partner, but often occurs with family too if you live in a small apartment where the odour is constantly present in all the rooms.
Patients with strong odour conditions which lack an organic cause will often end up being treated by psychiatrists for depression, social anxiety or phobic avoidance of society. Physicians will occassionally not be aware of the variable nature of the patient's odour especially if the patient is seen in a clinic where he/she may be seen by different doctors each time.
In contrast, a psychiatrist's appraisal will usually involve family members and it will become evident that the intermittent odour condition is very real and not imaginary. In cases where the odour is intermittent but occurs infrequently and there is no history from family, there is a very real danger that the patient may be wrongly diagnosed as having imaginary breath/body odour.
It must also be noted that eating red meat, dairy products, stress, consuming alcohol or coffee can all make the odour temporarily hugely worse thus some odour conditions can have huge daily variation.
For such reasons I do not believe delusional (imaginary) halitosis is as common as some dentists might claim. Indeed some dentists who specialize in such conditions may have a special interest because they themselves suffer halitosis. They will sometimes not realize that this may often prevent them from detecting a patient's halitosis!
In contrast, Halitophobia (an exaggerated concern about one's breath odour) is more common and may sometimes be due to odour accumulation in an environment where the sufferer is present for a good part of the day (at home or at work). Other people's comments about the odour many feet away will naturally make the patient feel that their odour is worse than it actually is when the problem is infact due to time-dependent odour accumulation in the environment. However, when it is at it's worst some types of breath or body odour can literally fill an entire lecture theatre in the space of a few hours.
Sometimes the psychiatrist may diagnose ORS (Olfactory Reference Syndrome) which is a psychiatric disorder similar to Halitophobia. This condition is considered by many to be a sub-type of OCD (Obsessive Compulsive Disorder) or BDD (Body Dysmorphic Disorder). So treatment will be the same as for OCD and may involve prescribing SSRI antidepressants such as Prozac or the use of CBT (Cognitive Behaviour Therapy).
As a pharmacist with experience in psychiatry I have found that the advent of these odour-related Message boards has produced a far more effective psychological treatment, and that is Group Therapy.
Just participate in our fortnightly phone conferences and you will experience the empathy and see what I mean. The message boards are a second choice for Group Therapy for those who feel too shy to participate in the phone conferences.