I wish you luck with your GP. I would suggest describing your symptoms as objectively as possible. Tell the doctor how people have approached you and explicitly asked if you passed gas around them. Don't make the mistake of saying things like "People think I stink" or "People are coughing at me", because statements like these come across as somewhat paranoid and will make the GP suspect something psychological. Also, don't automatically assume the GP will smell anything suspicious about you during your appointment. I once told a doctor that the reason for my appointment with her was because I stink badly. She immediately gave me a funny look, and just said "I don't smell anything unusual at the moment", and my heart completely sank because I had just been told by my friend earlier that day that I smelled terrible and thought my doctor would also obviously notice it, too. I think that, even if a doctor were to notice that a patient stinks, stinking badly isn't a symptom that they usually worry about - a person can stink badly for lots of reasons (some legitimately medical, but most benign and mundane), so I've found that you probably won't get much help if you list your primary complaint as only smelling badly.
If you can access this article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3052392/
print it out and take it with you to the appointment. In my experience, no doctor I've ever visited was familiar with TMAU or other bloodborne body odors, so it might be useful to present them with a peer-reviewed article about it, maybe just as a springboard, if nothing else, to talk about your worries.
I've also often wondered whether it would be useful to present this medhelp thread to them, so that maybe they could browse through it and see evidence that other people have the same concerns. I hesitate to recommend that, though, because as soon as the doctor comes across threads in which people have said that even newsreporters have been coughing at them through their TV, the doctor might immediately dismiss the concerns of the PATM community as paranoia. But there are also a lot of good threads here as well, so maybe doctors could get some motivation from being explicitly directed here. There are also some videos cropping up on youtube (not to self-promote):
https://www.youtube.com/watch?v=RN_tQ3v-siI
and the chinese news story:
http://www.scmp.com/news/china/society/article/1980633/chinese-graduate-claims-unwanted-superpower-people-are-allergic
that might be useful to present to a doctor. The bottomline is that doctors usually require objective, empirical evidence before they will take something seriously, so to get the most help from a GP, we are unfortunately in a position where we first must "build a case". We need to focus on presenting doctors with objective, behavior-oriented explanations of what we experience (e.g., "People consistently ask me if I passed gas") and on making sure they know that things like TMAU exist (if your current doctor doesn't know anything about TMAU, see if they know of someone who might), and perhaps on presenting them with emerging evidence that other people are experiencing similar problems.
I know that's too much to do in one doctor's meeting, but it would surprise me if a simple complaint of smelling badly would get you the right kind of attention from a doctor, so be prepared with how you'll respond when they say, "Well, I don't smell or notice anything right now, so you're probably okay".
Hey HelpMePlease84,
Sorry to hear this happened to you. We've all been through the stress of first encountering this condition, PATM. It is very likely linked to the body odor you are experiencing, which may be a condition called TMAU. In a nutshell, what very likely happened is you experienced the following disturbances to your body:
-- You lost a significant amount of good bacteria (an antibiotic is a likely reason). Good bacteria controls the population of a yeast called Candida that all people have, so it began to grow out of control. Candida produces multiple toxins when it dies, too many to be released through normal channels (urine, sweat, etc.), so your body is releasing them through your skin and people are reacting -- hence PATM. It also tears holes in your intestinal wall lining, allowing toxins to go in your bloodstream and be released through your skin.
--Your liver enzymes that help process food and get rid of body odor were compromised (possibly also by an antibiotic), meaning that whenever you eat certain foods (typically ones high in protein), you give off an odororous gas -- hence TMAU.
The good news is, there are some options that may help you.
I wrote another post on here about how I was able to overcome it PATM. I used the following products:
--Candida Cleanse (an antifungal) to kill the candida (by Purely Holistic; only available on Amazon)
--Saccharomyces boulardii (a probiotic) to help restore good bacteria (by Jarrow Formulas)
--Brown Rice Powder, a supplement full of amino acids, which help build back your gut, which likely has holes (by Jarrow Formulas)
--Oxy Powder (a colon cleanser), which helps flush dead Candida toxins out of your body (by Global Healing Center)
If I were you, I would start with the Candida Cleanse and take it until you feel detoxing effects (headaches, lots of mucus), then move on to each of the other supplements until you start to notice improvements.
As for body odor, I've dealt with that too. I've tried a million supplements, and the only thing that works to control it is kombucha capsules. The best one is RAW Kombucha by Garden of Life. Pro Natura also has an option (though I've found it tends to aggravate the PATM). I would start of by taking 4 kombucha capsules per day (two in the morning, two at night) and monitoring if your odor improves. It is only a temporary cure, so you have to keep taking it until we find something more permanent.
Good luck, and stay motivated!!
I think one of the reasons it's so hard to get help from a doctor is because doctors make a significant distinction between medical problems and functional impairments. Doctors are primarily interested in medical problems - they are concerned about issues relating to tissue damage, infection, sensory-motor abilities, etc. They are not necessarily trained to deal with all the various functional impairments an individual might experience in life.
PATM has caused me to isolate myself from others and to experience anxiety about doing simple things like getting groceries, going to meetings, or getting a haircut. Because of this social isolation, I really want a doctor's help in resolving, or at least in understanding, PATM. The problem is that, to a doctor, social isolation is really more of a functional impairment than a medical one. Social isolation would only qualify as a medical problem if one were isolated because of limited mobility resulting from, say, paralysis, or if the isolation could clearly be attributed to depression, in which case most doctors would refer you to a psychiatrist (which they often have done for me). Likewise, if we experience distress about having body odor, that distress also probably registers as a functional impairment to a doctor. Unless a funny body odor could be attributed to some kind of infection or tissue damage, a doctor might not feel confident in recommending any kind of treatment and would therefore recommend you to a professional trained to deal with more functional issues (like psychotherapists).
I do feel very strongly that PATM is the result of a medical problem. Throughout the course of my two years with PATM, I've had constant discomfort in my left flank (not pain, exactly, but maybe inflammation around my spleen, stomach, and/or left kidney), I've had trouble sleeping, I've had heart palpitations, my stool has been soft and foul-smelling no matter what I eat, and my liver enzymes have been abnormal. It's entirely because of my abnormal liver enzymes that I've even been able to find a doctor who takes me somewhat seriously. That is because high liver enzymes actually are symptomatic of a possible medical problem, and that's all doctors really worry about. My social isolation may strike a doctor as unfortunate, but unless there's some quantifiable disturbance in my body's physiology, doctors will consider my PATM as out-of-their-league. It might be beneficial, then, to ask a doctor for tests that might reveal physiological disturbances, especially liver function tests and a comprehensive blood test as a starting point to getting help from a doctor. Only if something is physiologically out-of-whack will they be motivated to take more functional issues (like being able to move about in public without making people cough) seriously.
Last time I calculated, I found that I've spent well over $1000 on various supplements over the last 2 years to try to control my PATM. PATM has made me desperate for a solution, and desperation causes us to take risks and make decisions we probably wouldn't make otherwise. I realize that, until doctors take this problem seriously, we have no other option than to self-medicate with supplements, but I have to admit that very few supplements have helped me. I hesitate to recommend any supplements for fear that it might cause people to spend money unnecessarily, but in the interest of communicating (anecdotal) information and findings, let me say that I have in fact found S. boulardi and (high quality) protein powder to be purchases that can be made confidently; they didn't cure my PATM, or really even alleviate it, but they did seem to have positive effects on my overall health. Protein powder (I use undenatured whey protein) is commonly recommended for people with AIDS to help boost their immune systems, so it's a medically efficacious supplement. S. boulardi is also commonly recommended by doctors for diarrhea (WebMD).
I'm still on-the-fence about Oxy-Powder, though. I tried it and it didn't alleviate any of my PATM symptoms. Oxy-Powder is claimed to release oxygen into the intestines, and you can supposedly feel this as a rumbling sensation in your intestines. I did in fact feel rumbling in my intestines while taking it, but to be fair, every laxative I've ever taken has also caused rumbling in my intestines, so until there's a more objective measure of whether your intestines are in fact being flushed with oxygen or not, I'm not sure I'd spend $50+ on Oxy-Powder. That said, it didn't seem to do any harm (although it's full of magnesium and people with kidney problems probably shouldn't take it).
Also, speaking of laxatives, I've found wheat bran to somewhat reduce the number of reactions I get. I apologize to anyone who needs to avoid wheat bran for dietary reasons (it's certainly not something you want to take if your intestines are inflamed), but it's the only supplement that reduced my symptoms almost overnight (reduced - not cured). It's also cheap and readily incorporated into your diet. I think it's better than psyllium husks because psyllium husks are mostly soluble fiber (i.e., they dissolve in water); wheat bran is insoluble fiber, so it moves through the intestines like a plunger (again, probably best to avoid if intestinal inflammation is a concern).
I've also found B vitamins to be efficacious, not for PATM in particular, but for my overall health. Vitamin B2 (riboflavin) is especially beneficial if you also have TMAU, but it's important to supplement all of the B vitamins together; supplementing just one might cause imbalances in the body. It also might be good to go with an activated (or coenzymated) B vitamin supplement, in case you have the "mthfr gene mutation" and don't know it. Also, most B vitamins include choline as well, which is best avoided if you have TMAU, so maybe try to find a supplement without it (or purchase the B vitamins individually, if the cost is reasonable).
Also, one of the things I wonder about with the candida hypothesis (which I think is as good as any hypothesis out there) is that if PATM is caused by candida, then why can't we just take diflucan and be done with it? I know some people might prefer a holistic or naturopathic approach to their health, but doctors know how to treat a candida infection, and for me, PATM is distressing enough that I'd be willing to take potent antibiotics and/or antifungals to treat it (Hell, if you told me PATM could be definitively cured by surgically removing my spleen or gallbladder, I'd agree to that in a heartbeat). There are risks with antibiotics/antifungals, of course, and you'd want to invest in a high-quality probiotic while on them, but I think it would make more financial sense to get professional treatment for candida than to buy supplements, which are not required to demonstrate any real potency to oversight organizations like the FDA.
I agree that PATM is probably related to leaky gut. I've found that I absolutely reek of whatever I've just eaten, so the idea that food particles are being allowed into my bloodstream makes sense to me. I also find that I start reeking of whatever I eat or drink almost immediately after I consume it, which would seem to imply that the food particles are leaking out of my stomach, right? Digested food (chyme, I guess, technically) probably doesn't start moving from the stomach to the small intestine until about 1/2 - 1 hour after eating (?) (although that probably depends on the kind of food being eaten and lots of other factors), so it would seem to me that my leaky gut is mostly in my stomach.
I've had a colonoscopy and gastrocopy, which would seem to confirm this. Apparently, my colonoscopy was completely normal, but my gastrocopy showed mild gastritis throughout the body of my stomach, so I've begun thinking that my stomach is part of the problem. But I didn't think the stomach was responsible for "absorbing" food (although it probably somehow does). This is where it'd be nice to have the opinions of medical professionals: What are the pathways of food or drink directly from the stomach to the bloodstream? Or is food maybe passing prematurely from my stomach to my small intestine (i.e., almost immediately after eating it)? Needless to say, I avoid eating in public now (although it is an easy way to show people that my odor isn't the result of poor hygiene - it's clearly a problem with my body's physiology).
i have the same for 3 years now. i have try it all noting helps me. and if i do hard work it smells more. im going to juce for 60 days and see if that helps
Do not cry or get emotional with doc. They dont like it and it will not help. Instead be calm assertuve. Bring research. Ask for test and tell them why. Since you havecodor i would start with odor first, then say, and now people are allergic to me. My docs believe me they just dont know what to do, they run test and send me to bspecialist that i ask for
In another forum i met a therapist who believes in patm. Why does she believe? She said the peOple that make her react have a distinct odor like yeast
You are all wrong about this being in your blood or gut.
Our bodies are releasing, some form of ions triggered from our brains.
Nero transmitters can't process a certain drug or chemical you use or have been exposed to.
Think about it very hard.
What travels so fast and thru glass windows, across the street, 100 feet away the car ahead of you with windows up!
Not dust, not bugs, not germ or virus.
These are ions produced from our brains, Nero transmitters are sending **** to our nerves and than being released.
Doesn't matter how clean you are or what you eat, our Nero transmitters are out of wacky from some drug or chemical.
Ions positive or negitive Carrie a electrical charge. Can travel fast as electricity, can travel thru walls windows ect.
Our brains produce electrical activity constantly.
I believe that any help would come from a biochemist or Nerologist.
This crap is from the brain and our nervous system, both electrical in nature.
We have billions of ions in our bodies. I on exchange is always there, but we are releasing to much that is triggered by our brain.
It's not a mental thing that can be cured by church or god.
It is physical and needs physical treatment. I believe alot of medication mind drugs are dangerous as well as the environment.
We itch, it's like electro static around us all of the time, other people can't feel a germ, or virus, but the sure enough can feel electrical static or ions that our body is releasing.
I have had this for 5 months now, I make people itch, some cough. It's a defense their body puts up when this **** contacts them. We do not constantly cough but itch from the release of this ****.
Please share and really think about it.
We need a doctor that can figure out why our brain is doing this and reverse the effects.
But if it's caused by the drugs we take or have taken it will be hard.
The drug companies hide alot.
PLEASE BELIEVE ME,IT'S SOME TYPE OF ELECTRICAL IMPULSE CAUSED BY OUR NERO TRANSMITTERS AND NERVES.
I had this before, it went away when I quit smoking and was put on paxil, a mind drug.
Nicotine, antihistamines make mine worse, electronic devices, make it worse, from one room to the next my condition changes but never goes away. I avoid people as much as possible. Please share. Don't buy any of these supliments in line cause they don't work and a waste of money and false hope.
Thanks for reading, I myself can't get help for this
Hello,have any of the patmers met each other to see if they would have reactions. I would love to interact with someone going through the same thing I am and maybe we can discover something