Avatar universal

PATM 20+ years I’m new to forum here’s my story.

I’ve been suffering from a particularly strong case of what we know to be PATM accompanied by an odor intermittently for the last 20 years.

This is my  first post here after reading the forum for years. Sorry if it’s a bit lengthy but I’ve been waiting 20 years to talk about PATM.

I decided to finally reach out to the community and share my experience with this debilitating handicap.
Despite my efforts it doesn’t seem to be getting any better. Reaching out on here will help me process and accept what is happening with help from you. Myself and many others like me just try and deal with this in silence in hopes to find a cure one day with any further embarrassment of everyone else knowing.

1. Background
2. Symptoms/observation & remedies
3. Conclusion

1. Background

I first noticed a problem around puberty. It seems like it happened over night at around 13. I went from smelling fine and had a normal happy life to seeing people make comments behind my back or just open windows when I was around.  It was confusing to say the least. Everyone would cough and sneeze and scratch their nose and eyes when I was around. At the same time I developed pretty severe acne and was taken to a doctor who administered the drug Acutane.
I believe this had a very adverse effect on my kidneys and intestines as I developed Crohn’s disease later on in my teenage years.
For years I thought I just smelled terribly from anxiety sweating and puberty. I withdrew from group activities became very antisocial and spent a lot of time alone. I only began socializing again when I started drinking in my teenage years. This seemed to alleviate the social anxiety I had around other people.
It wasn’t until years later that searched the internet and found other people with similar problems with people coughing and sneezing around them. This atleast confirmed I wasn’t crazy.

2. Symptoms/observations & remedies

These are the main symptoms I’ve come to deal with and how I’ve tried to combat them.

A: symptom
B: (solution)

A. Coughing, itching, sneezing, clearing throat around or in the same room as me.

B. I’d say around 80 percent of people have reactions to me specifically older people. The only solution I have for this is to not be in the same room or vicinity as others. My PATM effects people even outside!  

A.Musty odor from skin even after showering.

B.Using certain soaps with fragrance seems to really effect the PATM in a negative way. I either use Dr. Bronners scentless soap or just rinse with warm water.

A.Terrible body odor.

B. Watching what I eat. I try to stick to a vegan gluten free diet. Alcohol,fish,meat,dairy and sugar usually give people around me terrible reactions. I do take supplements and I’ve come to find out Jarrows L glutamine supplement does have a positive outcome. I would also recommend buying a bottle of RESTORE to help with leaky gut. If you’d like a more detailed list of supplements I can reply with it if interested.

I’ve tried many different deodorants and no deodorant for body odor. My body chemistry always changed the smell of a lot of them in a negative way when I was nervous. The best one I’ve ever found to work for ME is Schmidt’s natural deodorant with Charcoal and Magnesium. I hardly ever smell of body odor when wearing it.

A.Picking up smells in my clothes from the environment I’m in.

B. This is the weirdest thing of all and I don’t hear anyone talk about it. It might be unique to my case. My
clothes absorb smells from the environment I’m in. For example house smells food smells. Especially cooking/food smells. If I go to a restaurant that serves breakfast with no proper ventilation I find to be the worst and I come out smelling of grease. This might have something to do with having oily skin and particles in the air sticking to me, but I’m still not 100 percent sure what is happening. There is little to no information I can find about this on the internet.

A. Crippling social anxiety.

B. Knowing you can’t have a conversation with someone and concentrate because they are always  having an asthmatic reaction when you do so makes it really hard to interact with people. My body temp sky rockets and my palms turn clammy and cold. My only solution for this so far would be to drink and forget to care what is happening. I do not take any kind of psychotropic drugs.  CBD oil has helped with anxiety!

I work in the service industry so I meet 2-8 new people everyday. I have a very large sample of people’s reactions to me.

A.Bad breath/ white tongue.

B. I have some problems with bad breath also. It’s especially bad after eating or drinking alcohol. People offer me gum and cover their nose when I speak. I still have my wisdom teeth and it’s hard for me to get to the back and clean them. I will have a consult to have them removed soon and see if that is a solution. The white tongue has been an issue for years. I do smoke marijuana so that might be what it’s from as well as candida. I use a tongue scraper, brush, water floss pick, and get regular cleanings. Which helps a lot.

3. Conclusion

Reaching out here will hopefully help me cope mentally. I’ve thought of and contemplated suicide when I was younger.
The PATM seems to be getting worse the older I get. I do not have health insurance and have no access to a doctor at this point. Not sure if that would even help since a majority of people are unaware of this illness.
My best guess is that I have an enzyme deficiency coupled with diseased intestines from unhealthy American diet for many years. Hopefully this post helps me and others.

Please reply with any questions and I will do my best to answer. Thank you for reading and I’m looking forward to conversations with you all. Thank You.

4 Responses
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Avatar universal
I too have issues with odors clinging to me and my clothing despite having impeccable hygiene and a thorough clothes washing routine. When I travel I notice my clothing and luggage have a low level musty odor which is distinct from my new surroundings. Using Febreze or Lysol doesn’t help either. It seems whatever odor I produce permeates my possessions. Brand new items quickly loose their freshness and begin smelling. It’s not overpowering to me, but who knows how others perceive it.
Embarrassingly, when I have bowel movements the odor will “stay’” with me for quite some time.
Helpful - 0
Starting to have a hunch that some of us have especially oily skin and the odor is being absorbed into the oil in our clothes. Might have a link to the bacteria feeding on oil also. Either way it’s a nightmare to go anywhere.
Avatar universal
Good post, welcome to the forum, thank you for sharing your experienced.  Even if you did have health insurance no american doctor would believe you and just blame it on a mental condition.
Helpful - 0
Thanks. It was comforting to know I’m not alone , but doesn’t make it easier to get through the day. Seems the more I try to regulate this the more out of hand it gets. It’s getting very difficult to function and interact in society and I feel lost and sad all the time.
Avatar universal
For 20 yrs ive suffered from bacteria overgrowth the negative effects were a suicide thought attempt twice. But if you see other people who had it better than you die than you thinkthats what life is all about so survive till you 70 or 80 like the bible orders. The situation is I have it harder than all you guys and im going to tell you why . i was in the presence of the fbi and they said that because i was from mexico andinside america and contaminating. With patm i was going to get monitored and for 12yr. Now they use video and audio equipment to monitor me and they tell the neighbors or business people of the town to rebuke me . i cant keep a job i live partly with my parents and watch tv all day. I dont have true friends. I feel great because the doctors would say it was nothing wrong with me. Theres technically isnt anything wrong cause your not in fleshly pain. Be careful you dont want the police operating agsinst you it is a crime to contaminate even if its a little and they will try to get rid off you because you detrement business tourism etc. Ok bye . good luck london girl.
Helpful - 0

I didn’t quite follow most of that. Why I did get out of it is a bacterial overgrowth in the small intestine. Which is very interesting because I was diagnosed with Crohn’s disease of the ileum shortly after this PATM started.

Going to look into a SIBO diet.

“The SIBO diet is a gradual elimination diet that is meant to reduce inflammation in the digestive tract and bacterial overgrowth in your small intestine.

In some cases, eliminating only sugars can ease symptoms. Doctors often suggest incorporating a diet low in FODMAPs, which are difficult-to-digest carbs that are fermented by gut bacteria in the colon.

When carbs can’t break down, they sit in your gut and can cause symptoms such as diarrhea and bloating. In addition, if there is bacterial overgrowth, the small intestine bacteria begin to ferment the carbs too early, causing many symptoms.”

It is mental but also most def physical. London girl. Our mental state stresses us out which makes reactions worse. But it also very def a physical abnormality that’s makes us cause distress to other people’s environment.
Avatar universal
Started the low FODMAP diet. Basically carbohydrates our gut can’t break down are passed into the large intestine and cause bloating, gas, and loose stool.

If you’d like to read more or watch videos google Monash University Low FODMAP diet.

There’s also an app to help you keep track of what to eat and what not to.

I’ll give you an update on mental state, mood, abdominal pain, and reactions soon.
Helpful - 0
How's your Low FODMAP diet going?
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