[mpdela]

Two doctors from the Massachusetts General Hospital and Harvard Medical School posted a comment in my blog and the MeBO website asking people to participate in their questionnaire. This is what they say,

Think you smell bad?
Do others say you smell fine?
For a $10 gift card, take survey.
http://www.surveymonkey.com/ORSSurvey

(MGH OCD and Related Disorders Program)

Why is this research study being done?
Very little is known about individuals with body odor concerns or Olfactory Reference Syndrome (ORS). Therefore, the goal of the present study is to learn more about the symptoms experienced by individuals with body odor concerns, past treatment experiences, and how the disorder may interfere with life. We hope that this information will help us to address diagnostic questions and treatment needs, and eventually improve the quality of care for people who suffer from perceived body odor concerns.

Who do I contact if I have questions about this research study?
The principal investigator for this study is Sabine Wilhelm, PhD. She can be reached at (617) 726-6766 any time between 8 am and 5 pm EST, Monday through Friday.

You may also call Dr. Jennifer Greenberg, the co-investigator, with any questions. She can be reached at (617) 726-5374 any time between 8 am and 5 pm, Monday through Friday...

I know that many of us feel as I do about this diagnosis, and others do not. Please feel free to participate in the survey if you like, and to email these doctors with whatever comments you may have.

I have already written them my opinion, as I copied and pasted in my post in my blog. http://www.bloodbornebodyodorandhali...reference.html

Perhaps we can get these doctors who are with the Harvard School of Medicine to do research for us. We do need to let them know that we would very much appreciate it.

María

[elgrizzle]

I filled out the survey.

Wow, I always knew how bad I felt about my odor problem, but this really revealed to me how deeply affects my life.

Thanks Maria, great survey. The comprehensiveness of this survey gives me hope because it shows that people in the medical community are starting to realize how much of a problem this is. This could eventually lead to more research and treatment.

I stay positive and believe that they(maybe even me) will one day be able to successfully treat these conditions.

[vilenin89]

Yeah.. I just took it. Didn't use my real social security number though.

[manny_calavera]

I liked your response, Maria. Wow! You sure know how to speak for us! I'm glad there are people like you out there helping us out. I'll be sure to do the survey soon when I have the time.

Thanks for everything, Maria.

[manny_calavera]

I just completed the survey. Very misleading questions with the assumption that this is all in our head ...

[manny_calavera]

Hi Manny,

Perhaps we can update something after we get some feedback from the MGH, Harvard Med School, doctors and we have a good discussion about these things.

Thanks for sharing Manny.

María

http://en.wikipedia.org/wiki/Olfacto...rence_Syndrome

Anyone wish to add anything to the wiki page linked to above? People actually read this stuff, so it would be good for readers to see the opposite view concerning this subject.

[elgrizzle]

Ah, perhaps I had misinterpreted the survey. There is no doubt that I think about my odor too much, but I did not realize that the purpose of the survey was to solely focus on that aspect.

I read your email directed towards the research team.

"A diagnosis of Olfactory Reference Syndrome or any other related OCD diagnosis can be profoundly damaging to a person who suffers from intermittent body odor because the treatment for these conditions is geared toward denying the person their true reality and to instead force the person to lie to themselves even as the reality continues to replay itself throughout their lives."

Very well put!

[mpdela]

Hi everyone,

Thanks for your feedback. I would love to hear from others with opposing and supportive views as well. I always really looking for what others think, lest I should stray from the truth too much.

It’s not that I don’t believe in ORS, but rather that I am objecting to the lack of scientific testing to determine whether or not a person is emitting odorous compounds that some persons, not all, may detect. Consequently, the sufferer may be getting very negative reactions from co-workers and classmates and not understand why. Then this same sufferer goes to home or to therapy and is being told that he doesn’t smell and has ORS instead. Then he enters a whole treatment program in which he is trained to believe the false illusion that he never smells to anyone.

In reality then, some of the co-workers smelled him, because aggressive, passively or overtly, and the sufferer then interprets it as there being something wrong with himself – that he is not attractive, that he’s a horribly repulsive person to society, etc. However, the truth is that people were not reacting to his personality but rather his odor.

WE NEED TO KNOW THE TRUTH. That’s where I’m coming from. Not that I don’t believe that ORS doesn’t exist but that it should NEVER be treated UNTIL the sufferer has been tested for odorous compounds. Unfortunately, the only test out there is TMAU, which doesn’t measure the sulfur compounds, nor skatoles or indoles, ammonia, etc.

I have always turned to psychology to find answers to sort out my feelings and coping mechanisms to society, and have had years of therapy myself on and off throughout my life. It is most certainly very helpful when I find a good therapist. My son, the one who has the strongest odor, is currently in his Masters Program to be a Psychologist. He loves it so much that he says that he’s going straight into his PhD program when he finishes his Masters. I raised him to see the benefits of psychology, and he did.

I am simply focused on the foundation needed for the proper ORS treatment – to scientifically establish whether or not a person is emitting odorous compounds that perhaps only a fraction of society can detect, not based on the subjectivity of the olfactory system of the therapist or family members.

I encourage more feedback from everyone. I would really want to know what you all think.

María

[elgrizzle]

Im very proud for your son Maria. Thats excellent for him! Right now I am really enjoying learning at school, I just don't want it to end. I will definitely take more school once Im finished my audio production diploma to eventually get a PhD in experimental medicine. I know its two completely different fields, but I feel strongly about both. And I really want to solve this odor problem with research. and a PhD, so prestigious, even if I am producing music successfully, its just one of my goals !

BTW, I would be very angry if one were to diagnose me with ORS. I would argue with the Doctor and tell them they are wrong, and then report them.

[mpdela]

Hi elgrizzle,

Your studies sound so interesting and exciting! Good luck with that.

About getting diagnosed with ORS, even though I'm pursuing testing before a diagnosis and treatment is arrived at, I do believe we can all benefit from therapy as long as it is more focussed on how to cope with emitting body odor at the most inopportune social settings, how to cope with the rejection, and how to stay focussed on our educational and employment and other social goals, as opposed to someone trying to persuade us into believe that we don't smell. They don't know that, just like we wouldn't know if I have lung cancer without at least having a basic chest X-Ray! Why can't body odor sufferers have the medical system immediately prescribe a few basic tests when presenting with BO, such as a TMAU test and volatile compounds test to be done under the proper conditions to ensure the odorous compounds are present and not metabolized?

My suggestion is that if you're ever diagnosed with ORS, give your therapist a chance, explain how subjective you think the diagnosis is, and see if he/she would agree to help you cope socially with YOUR perception of emitting BO, how to help you get feedback from those you think smell your odor, and how to cope and function well to accomplish your goals. If you therapist agrees with this, I believe you can gain from doing therapy with him/her.

Meanwhile, I think we should continue to ask Drs Sabine Wilhelm and Jennifer Greenberg with the MGH OCD and Related Disorders Program of the Harvard School of Medicine to help us with research so that we can improve mental health treatment of persons with body odor to modern-day standards, whether it is ORS or based on a certified medical body odor condition.

These are their email addresses: jlgreenberg@partners.org , wilhelm@psych.mgh.harvard.edu

María

[manny_calavera]

Originally Posted by elgrizzle

Im very proud for your son Maria. Thats excellent for him! Right now I am really enjoying learning at school, I just don't want it to end. I will definitely take more school once Im finished my audio production diploma to eventually get a PhD in experimental medicine. I know its two completely different fields, but I feel strongly about both. And I really want to solve this odor problem with research. and a PhD, so prestigious, even if I am producing music successfully, its just one of my goals !

BTW, I would be very angry if one were to diagnose me with ORS. I would argue with the Doctor and tell them they are wrong, and then report them.

Don't ever argue with a doctor. You'll be the only one who loses if you do.

I hope they read this,

I went to doctor yesterday, I had appointment this time and different doctor in the surgery. I went in there with really only three or four main points that are affecting my life. Nightsweats,odour and few other other embarrassing hormonal related things..

He completely dismissed me - He said to me that no matter what anyone says to you - you think you smell and they may well be with you forever its mental and the way you perceive yourself and odour is wrong. He said that no doctor at any point has ever wrote i smell. So i said ok fair enough i can aspect that its possible that everytime i seen the doctor i don't have odour - mainly due i have shower 30mins before.


I did say i come back after 24hours and his responce was everyone smells after 24hours - so i said 12 and he still said the same - I said 6hours and that if i don't want to deal with public to speak to lady on front desk and explain it all to her and have to shame myself again.

PCOS - he said by look at me i don't have ( i do agree ) yet by just looking at me his gone agaisted 4years worth hospital constanlts saying i do - On some things it did make sence tho goes agaisted everything wrote on the internet about PCOS lol

I explain hospital sent me for mirc,cat scans he didn't no nothing about this - i explained every blood test my andrgoen horomons are high - I also asked about pcos mimic something else - he said well theres a question!! - it really like dealing with someone out the darkages

Also i said i have nightsweats - this is normal , hoflushs - this is normal " womens problems " - lots women have this ..

In end i said look your not going to belive anything i say to you or you dismiss it - So send me for blood test and then we will get results and you can take it from there ( every blood test i have they get all worryied and then say its pcos )

soo i got wait another month before see him - but even tho he thinks im loon - im hoping that once results back from blood test - I then correct diagnose which i do think its something miminc PCOS and hopefully can then get correct drugs and get some relief.

He also said i don't need medication and i should not take for depression or anything else - i said i wasnt on no medication and he said thats good as that stuff is like posion ( all the anxiety tabs and so on )

He listen - It was funny convo, i asked him straight if he thinks i have olfactory and he said he does think its mental - he don't think im hypercontract as i also asked this..

I told him i shouldn't have to proove i smell and judgements have been made on me without any investigation or have i ever been able to proove i smell due to i always shower...


I really really think that because i don't turn up there smelling terrible - this is how they judge me. They fail to realise its took me years or trial and error with deo's and soaps and way i wash and ton's of other stuff i have to do and foods i avoid to be finally to get this stage -- The fact is i wouldn't sit in doctors surgery full of people smelling bad - If i got comments as i have done in the past - i always will walk out and not put myself thro the depression or mental downturn that enduring that kind of negative hate from random stranges causes me...

I can say all this thousands times - But to them im just working out clever ways to make it real...

I simply can not turn up to doctors without shower and sit there - I can't do it - i tried in the past and emotionally it takes the life out of me having to deal with all sneers - soo im stuck in this circle and prob will be tell i reach age i don't give fk about anyone. By what time they prob diagnose me with something else and put down odour due to that...

Am hopefull - at least i got bloodtest

[elgrizzle]

Bridge Im sorry to hear about your story, although, its not necessarily a bad thing that the Doctor's don't smell you. Some people have no relief from a shower at all.
Ive never asked any of my Doctor's if I smell or not. Most have tried to help me, and a few have not.

One thing I could suggest is to look on the internet for Doctor's in your area that deal with odor problems. For example, I looked up an endocrinologist in the Vancouver area, and emailed her asking if she had ever dealt with TMAU. She said yes, so I got a referral from one of my GPs.

Maybe you could look up an endocrinologist, and email them and ask them if they have dealt with similar issues. Finding the right Doctor sometimes is key.

[blue_sky_collector]

Originally Posted by bridge

I hope they read this,

I really really think that because i don't turn up there smelling terrible - this is how they judge me. They fail to realise its took me years or trial and error with deo's and soaps and way i wash and ton's of other stuff i have to do and foods i avoid to be finally to get this stage -- The fact is i wouldn't sit in doctors surgery full of people smelling bad - If i got comments as i have done in the past - i always will walk out and not put myself thro the depression or mental downturn that enduring that kind of negative hate from random stranges causes me...

Yes, doctors are *supposed to have "all the answers" when you go see them. Its part of our culture to expect them to cure us, so they decide there and then at your appointment, based on what is presented to them. Did you present a smell at the doctors? Maybe, maybe not. Does he care to find out? Probably not from what you are saying.

Find another doctor to deal with this issue.

I almost never smell at the doctors, and only once in a while at the therapist. I sure did in **group therapy** though (cause I felt forced and anxious), and it was fairly obvious. What I always say to doctors or health professionals is: it shows up when I am under significant stress or anxiety, and then they don't have as much of a problem believing it. Even though GP Doc believes me and will prescribe lactulose and other odor deterrants, he still says things like "well your sweat glands are overactive"... and I'm like "didn't you understand that it starts as an **enzyme deficiency** or something internal?" He understands when I am talking about it, but its just not his specialty.

So what I'm saying is many doctors may not be trained to deal with what internally creates an odor. Being very frank many GP doc's spend most of their time with colds, flus, fevers, diabetes, cholesterol... the common ailments.

With this doctor, it doesn't sound like you will get the affirmation you need. Find someone objective to help monitor it who can go with you into a stressful environment after eating all kinds of your trigger foods/ problems.

If you are trying to document the odor with a medical professional, you will need one who is open minded... a metabolic specialist, endocronologist, geneticist, who realizes the smells are possible in the first place. Even though you probably don't have it, take a TMAU printout of info with you and say "it seems something like this". If they are willing to believe TMAU is possible, they will probably be open minded enough to help you further.

If you have anxiety (which many sufferers do) you should see a therapist. They are there to help you with your feelings and perceptions, a doctor is not. If a doctor can't see whats wrong with you with charts, tests, and within his specialty, he isn't going to waste his time further. Also, don't ever see a General Practitioner doctor for something psychological or psychiatric. They don't know the ins and outs of the meds.

Keep looking for a good doc, they are out there but it takes some shopping around.

[mpdela]

I have received a reply from Dr. Jennifer L. Greenberg, Psy.D., OCD and Related Disorders Program, Massachusetts General Hospital and Harvard Medical School, http://www.mghocd.org/ , in which she acknowledges that "body odor concerns are understudied and not very well understood at this time...We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer."

I will copy and paste her email here for all to see and will then do another post of my reply to her. You can each make your own personal decision whether to fill out the survey and email her any other comment or information you may want to tell her, as she is welcoming it. Here's her email message:

Dear Maria,

Thank you for contacting us regarding our survey. As you know, body odor concerns are understudied and not very well understood at this time. We are very excited by the mutual interest and discussion generated by our survey. We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer. This is not a treatment study, but rather, our goal in conducting this research is to simply learn more about the symptoms and experiences of individuals with body odor concerns. For some individuals, the source of the body odor may be a diagnosed (or undiagnosed) medical condition; however, for others, no perceivable body odor is emitted, yet they spend hours/day worried about a perceived odor. We believe that all individuals with body odor concerns may suffer immensely with worry about the odor (or perceived odor) and its impact on their social/school/work life. In filling out the survey, we welcome your readers to write in about their specific symptoms, treatment experiences and/or medical diagnoses in an effort to help us better understand their experiences.

We hope to learn more about these various experiences, and look forward to a continued, fruitful dialogue.

Best regards,
Jennifer L. Greenberg, Psy.D.
OCD and Related Disorders Program
Massachusetts General Hospital
http://www.mghocd.org/