Rare disorder still going....

Angeleyes7715 · Dec 13, 2017

I've been living with a liver malfunction or bacterial odor that makes people think I am farting constantly wherever I go for 5 years living in society is a nightmare with this problem.

I've been to countless Drs and I'm in debt with no solution.

My anxiety is so bad I can't focus and start shaking forgetting everything and crying at jobs.

How does God get any glory out of me not being able to function in this world at all? At least Job was restored. What can God gain from an entire life of bullying, torment, and misery? Does he really intend for me to live like this for the rest of my life? Go homeless, starve, and be abandoned because I am not normal? Cause he has not showed up in all this at all despite prayer.

RC1970 · Dec 13, 2017

Angeleyes7715 said:
I've been living with a liver malfunction or bacterial odor that makes people think I am farting constantly wherever I go for 5 years living in society is a nightmare with this problem.

I've been to countless Drs and I'm in debt with no solution.

My anxiety is so bad I can't focus and start shaking forgetting everything and crying at jobs.

How does God get any glory out of me not being able to function in this world at all? At least Job was restored. What can God gain from an entire life of bullying, torment, and misery? Does he really intend for me to live like this for the rest of my life? Go homeless, starve, and be abandoned because I am not normal? Cause he has not showed up in all this at all despite prayer.

The Lord usually gives us things like this to keep us grounded and close to Him. In your prayers remember to always offer much praise and thanksgiving to the Lord for all that you have been blessed with and then ask Him to help you with your difficulties.

Isaiah 55:6 "Seek the LORD while he may be found; call on him while he is near."

Read 2 Corinthians 12:1-10

brinny · Dec 13, 2017

Angeleyes7715 said:
I've been living with a liver malfunction or bacterial odor that makes people think I am farting constantly wherever I go for 5 years living in society is a nightmare with this problem.

I've been to countless Drs and I'm in debt with no solution.

My anxiety is so bad I can't focus and start shaking forgetting everything and crying at jobs.

How does God get any glory out of me not being able to function in this world at all? At least Job was restored. What can God gain from an entire life of bullying, torment, and misery? Does he really intend for me to live like this for the rest of my life? Go homeless, starve, and be abandoned because I am not normal? Cause he has not showed up in all this at all despite prayer.

Praying for you, dear heart (((hug)))

God bless Joshua · Dec 13, 2017

Remember the story of poor Lazarus who beg whatever he received from the rich man house, when he died the rich man died too as Lazarus has served God with his poverty to reveal the hearts of the richs that God may condemn the stingy richs to hell.

Cant you use deodorant to get rid of bad smell ?

God bless Joshua · Dec 13, 2017

RC1970 said:
The Lord usually gives us things like this to keep us grounded and close to Him.

He should be visited and treated well by the church people who may support him directly and financially.

Zoii · Dec 13, 2017

I'm sure you've seen who you need to, to manage your symptoms. In case you haven't, a nurse consultant at a hospital could advise you where to seek help or be able to provide you some assistance themselves.

But I totally get what you say. I personally don't believe our suffering is God's plan per se... It's just what happens in the lottery of life. Some terrible people have great lives and are lucky in everything, while those good and pure of heart suffer terribly.

All we are left with is to try and play the best hand we can, with the cards dealt to us.

Angeleyes7715 · Dec 14, 2017

Zoii said:
I'm sure you've seen who you need to, to manage your symptoms. In case you haven't, a nurse consultant at a hospital could advise you where to seek help or be able to provide you some assistance themselves.

But I totally get what you say. I personally don't believe our suffering is God's plan per se... It's just what happens in the lottery of life. Some terrible people have great lives and are lucky in everything, while those good and pure of heart suffer terribly.

All we are left with is to try and play the best hand we can, with the cards dealt to us.

Yeah we don't really have much control in this life. And no, I don't have a way to manage symptoms sorry, but doctors don't know about this problem. Blood borne halitosis is not well studied or understood. Drs only know about halitosis from bad hygiene or breath or something conventional and my symptoms are intermittent meaning I don't just stink on command -__- it is worse in social situations or with certain foods true, but when it happens it's always gross and embarrassing so no matter what I eat or don't eat do or don't do... if there was help for this I would have found it by now. If a doctor doesn't notice what I'm telling them right then and there they just say it's a mental problem or a hallucination.

So suddenly now because they can't figure it out it's all in my head. I'm sure I imagined hospital staff calling my room smelly, coworkers saying I need to wash down there, people in dorms saying who cut the cheese someone farted pointing and laughing, my past boss saying it smells of kitty litter, people in grocery stores saying ew that's so gross and plugging their nose, my mom rolling down a window in the car with me when we both smelled it. People commenting I smell like _ when I'm in public and pass them sometimes. Lady in back of me on universal studios tram tours having a coughing fit because our tram started smelling like dog poop and throw up at the same time randomly.

Trust me, this disease is too horrible to even imagine. I'm getting a genetic test eventually to see if I can get to the bottom of this. Until then I have no idea why how or what's causing it. If it's a genetic mutation then I'm stuck like this for life.

Waterwerx · Dec 18, 2017

You may need a referral to a toxicologist and/or medical geneticist that specializes in metabolic disorders if you want to get to the bottom of it.
I'm assuming the doctors weren't completely incompetent and at least physically checked things such as your nasal cavity(ozena), abdomen, and ruled out cancer.
One of the malodors which you're describing is most likely caused by one or more volatile sulfur compounds(sulfides and mercaptans), which is why I suggest a metabolic disorder. A good doctor should have no trouble determining the cause of the odor(s) in regards to the substances involved. From there, it becomes a matter of determining the source(s). However, I should point out your descriptions of what others have said about your odor indicate more than one kind of odor since kitty litter, vaginal, and fecal odors are each caused by different volatile organic compounds.
You would be surprised how many doctors will overlook the obvious either to make a quick diagnosis and/or because they've never had to deal with a similar case... So you end up being treated for the wrong diagnosis repeatedly and ran around in circles with no end in sight.

Angeleyes7715 · Dec 18, 2017

Waterwerx said:
You may need a referral to a toxicologist and/or medical geneticist that specializes in metabolic disorders if you want to get to the bottom of it.
I'm assuming the doctors weren't completely incompetent and at least physically checked things such as your nasal cavity(ozena), abdomen, and ruled out cancer.
One of the malodors which you're describing is most likely caused by one or more volatile sulfur compounds(sulfides and mercaptans), which is why I suggest a metabolic disorder. A good doctor should have no trouble determining the cause of the odor(s) in regards to the substances involved. From there, it becomes a matter of determining the source(s). However, I should point out your descriptions of what others have said about your odor indicate more than one kind of odor since kitty litter, vaginal, and fecal odors are each caused by different volatile organic compounds.
You would be surprised how many doctors will overlook the obvious either to make a quick diagnosis and/or because they've never had to deal with a similar case... So you end up being treated for the wrong diagnosis repeatedly and ran around in circles with no end in sight.

I had a hydrogen breath test (probably not useful since I was smelling sulfur compounds), I had stool testing done, blood work, upper GI, colonoscopy, cystoscopy, ultrasounds, X-rays, CT scan, colonics, went to a rectal surgeon, saw an ENT, yeah none of it got to the bottom of it. Nothing. So I'm completely convinced it's my liver and what your saying is what I tried to explain to the doctors I've seen and to various people because of my organic chemistry background that made sense to me as well since various organic compounds skatole and other horrible smelling aromatic compounds as well as H2S. For awhile I had a smell of cadaverine compound awful rotten flesh smell. But anyways, my liver area does feel sensitive and irritates me when I take certain medicines now such as Tylenol. It's going to take forever before I can afford to get the genetic testing done I want. This disease has landed me in serious medical debt as you can imagine.

And no the doctors I've seen don't even seem to acknowledge basic chemistry terms, they think I'm completely making this up. I have trouble getting them to diagnose basic ear and sinus infections, this is out of their league by far. There's also no way they'd ever give me a referral for a geneticists or a toxicologist. From my experiences with doctors I'm not even sure they know what those words mean and I'm not even trying to be funny, literally my gosh, like honestly I've been through 4 doctors in 1 year they all quit in my area. I see them for 5 minutes and they don't listen to one word I say just tell me I'm wrong and charge me money or laugh at me and smirk. What's worse is the naturopaths that try to convince you that they can help when really they don't know either and they have less training that the MDs.
Literally Drs get frustrated with my symptoms and don't want to deal. I don't know what state or what doctors you're seeing but here in Arizona they are terrible. At least from my experience they are and dentists are right there with them. I almost died due to abcessed infected teeth my eyes were blurring and literally slipped right through the system.

Waterwerx · Dec 19, 2017

Angeleyes7715 said:
I had a hydrogen breath test (probably not useful since I was smelling sulfur compounds), I had stool testing done, blood work, upper GI, colonoscopy, cystoscopy, ultrasounds, X-rays, CT scan, colonics, went to a rectal surgeon, saw an ENT, yeah none of it got to the bottom of it. Nothing. So I'm completely convinced it's my liver and what your saying is what I tried to explain to the doctors I've seen and to various people because of my organic chemistry background that made sense to me as well since various organic compounds skatole and other horrible smelling aromatic compounds as well as H2S. For awhile I had a smell of cadaverine compound awful rotten flesh smell. But anyways, my liver area does feel sensitive and irritates me when I take certain medicines now such as Tylenol. It's going to take forever before I can afford to get the genetic testing done I want. This disease has landed me in serious medical debt as you can imagine.

And no the doctors I've seen don't even seem to acknowledge basic chemistry terms, they think I'm completely making this up. I have trouble getting them to diagnose basic ear and sinus infections, this is out of their league by far. There's also no way they'd ever give me a referral for a geneticists or a toxicologist. From my experiences with doctors I'm not even sure they know what those words mean and I'm not even trying to be funny, literally my gosh, like honestly I've been through 4 doctors in 1 year they all quit in my area. I see them for 5 minutes and they don't listen to one word I say just tell me I'm wrong and charge me money or laugh at me and smirk. What's worse is the naturopaths that try to convince you that they can help when really they don't know either and they have less training that the MDs.
Literally Drs get frustrated with my symptoms and don't want to deal. I don't know what state or what doctors you're seeing but here in Arizona they are terrible. At least from my experience they are and dentists are right there with them. I almost died due to abcessed infected teeth my eyes were blurring and literally slipped right through the system.

The Undiagnosed Diseases Program
To apply
https://undiagnosed.hms.harvard.edu/apply/
They also have a contact phone number and email address.
You'll probably want to have a medical professional help you with the application since the two most important things for these applications is being concise and accuracy, which means you having access to your entire medical history records. They also have a list of everything you should try to get during the waiting process(images of previous CTs, MRIs, etc.). It will be a lot of work tracking everything down being that you've visited so many different doctors & specialists, but if they take your case, you won't have to worry about medical bills.

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Rare disorder still going....

Angeleyes7715

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RC1970

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brinny

everlovin' shiner of light in dark places

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God bless Joshua

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God bless Joshua

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Zoii

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Angeleyes7715

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Waterwerx

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Angeleyes7715

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