My time in this cell is both long and short at the same time.  The days are long.  Second by second, minute by minute, hour by hour.  But each day is unremarkable.  So much so that there are few landmarks for me to gauge my progress against.  So the months go on.  I bear the insufferable meekly, content to wallow in my misfortune.  Only occasionally shook free from complacency with bouts of indigent rage.  I see some light.  Is it a mirage?  Will this year turn into a lifetime in this cage?

My TMAU urine test was negative. I am unsure whether I will take the financial hit and get a blood test done to confirm. I saw an ENT recently, my breath odor might be in part due to my cryptic tonsils, GERD and deviated septum. I am getting this taken care of this month. The strong fecal / anal odor that I get in waves might simply be from a combination of excessive sweating around the buttocks and the minor leakage of mucus due to IBS.

I’m getting a series of tests done from a good doctor that thinks my problem is mostly metabolic (TMAU or something similar). I hold out hope that this wetness combined with those aforementioned breath problems is the crux of my malodor. Wishful thinking, but we will find out soon.

Perhaps I am too optimistic, but I see some light at the end of the tunnel. I decided not to head back to school this semester. I have one more semester to get this sorted out before I have to go back to keep my health insurance. It’s a race against the clock. It’s stressful yes, but I’ve been keeping my mind and body as sharp as I can. I also got a nice haircut and at least I’m looking quite handsome at the moment. Some solace, but not much, but hopefully I’m able to regain some of my charisma and social skills and get this problem under control enough to go out and woo some young ladies again in the next few months.

For those of you suffering from TMAU there is some promising news coming out of Australia. Rob may be able to get research started soon.

Personally I’m taking one class (distance learning) to try to chip away at my degree requirements and I’ve been reading, listing to music, going for walks and lifting a bit.
Recently I’ve been reading

The Stranger by Albert Camus

Jews Without Money by Michael Gold

Catch-22 by Joesph Heller

I’ve been reading a lot more than that, but those books are all highly recommended. It might be hard to get your hands on the Michael Gold book, but it’s absolutely worth it. Jews Without Money is really the quintessential American proletarian novel. And as a proud working-class (psuedo)-intellectual it’s an achievement I really can respect. The Stranger is a deep philosophical text that I don’t feel up to interpreting on this blog, but to me the book is a beautiful embrace of the whole absurd spectacle of human existence. The human experience is really just our noisy inquiry clashing against against the silence of the universe. It can be terrifying, ugly at times, but it’s all that there is so you might as well make the most of it and try to keep bettering yourself and pushing forward for not only yourself, but for your fellow man.

Hats off to anyone who caught the homage.

If my parents could notice my smell it would make things a lot easier.  I have my next semester starting in around a week and a half and I am utterly unprepared for it.  I’m pretty sure I won’t be able to subject myself to the trauma of those months away from home alone confronting a society that is at best apathetic and at its worse vindictive. 

Just for the sake of contrarianism I’m going to investigate the possibility of a fistula and any sort of other problem (ie: Candida) while I wait for my TMAU results. I also have a deviated septum that I need to get surgery on that may be causing a bit of a mild secondary halitosis.

Life shouldn’t be this hard.  I should be bothered with petty problems, like dating troubles or working too many hours.  I shouldn’t have to deal with this.  I’m not a misanthrope, but I’m definitely not feeling that sympathetic to people who complain about these petty problems nowadays.

I really need to rid or at least manage this odor or else I’m going to have a very undistinguished, tragic existence here on Earth.  Sure people have it worse and most of the time, like me, they are victims of environmental factors.  Global underdevelopment, exploitation and oppression.  Only thing is that I’m living in a relatively prosperous society among my peers who are having a lot better go of things than me.  If that didn’t yield some sort of lingering resentment something would be wrong with me.

I wish I could pervade more optimism to my readers, but honestly it’s a lot more sane for me to frankly confront my situation and how I feel about it than pretend that everything is alright.

PS: I’m currently on a 7 day course of Flagyl with probiotics to try to change the bacterial composition of my gut per the NIH’s protocol to see if that helps.  I started the regime with the Lactulose, but I haven’t noticed much improvement yet.

The last several months have been especially rough and I’ve found solace in the company of one of my female friends.  She is the perfect girl and I’m not just blinded by my affection.  But I think I’m fooling myself about how I feel about her.  You heard of people secretly loving their friends and convincing themselves otherwise… well I’m kind of doing the opposite.

***

I feel like I’m fooling myself about my emotions towards her.  I never felt a visceral attraction to her though I can understand why other people have.  She is a very pretty girl, she is intelligent and we are very "compatible" with one another.  She has always shown sympathy to me when I’ve been down and I’ve absolutely relied on her more than she knows for social contact. She is in a way my connection with normalcy, a goal I am marching towards.  I love this beautiful girl and I’m not in love with her.  She feels the same way, but I get the feeling she is kind of afraid that I am in love with her.  I kind of do wish that I was anyone of the jackasses that gets to have a go with her, but wouldn’t the same be true of any attractive girl that someone is close to? The thing is she knows that I have a better personality and I am at least as good looking as these other blokes, but I obviously have baggage that I wouldn’t want to thrust onto her even if I did have serious romantic feelings for her.

I like our relationship the way it is.  I have bigger things to worry about than girls at the moment and when I am ready, hopefully someday soon… when I manage this condition and get with a girl it will be someone else and someone different.  I’ll probably have to go through a few of them before I find the one I want to be with. But she will hopefully be here as my friend forever.

***

Crossroads

Today after I ate 2 egg whites and some tomatoes and I got a nasty rotten egg / weird quasi-diarrhea odor in my room.  The sulfur in the rotten eggs might have bothered me.  I know a little yolk got in one of the egg whites too.  About an hour later the odor is still in my room.  Will need to keep this in mind.

I’m hopeful that I can use what worked for Melissa and Maria’s son to get me on track for school, which is only a few weeks away.  I’m worried that if I can’t eat egg whites that my diet will lack the protein a young man needs, but I’m more worried I’ll be depressed and embarrassed next semester.  If I don’t go to school next semester or if I transfer I’m going to let down my friends at my uni and I know I can’t abandon those friends too.  They’ve mentioned the problem behind my back… just a little, but for every time they did that I know they protected me from the “outside world” a few times.  I know which ones were better dealing with it than others, but I can’t forget it must have been an usual and difficult situation for them too.  I’ve already come close to alienating my friends from high school, I can’t do this with my friends at college and I’m obviously not in a condition to make new friends.  So I guess my best bet is to try to manage this thing in the coming weeks, stick to the diet at school and abandon the comfort and security of my home.

It’s not my fault and I’m doing the best I can.

Life is like a game of cards. The hand that is dealt to you is predetermined; the way you play it is free will.

Jawaharlal Nehru

I’ve continued the diet with little sign of improvement and I am still waiting my test results which should come in by the middle of next week.  So just a few more days.  I’m still a bit worried by the fact that I didn’t do a full Choline load, but the fact that I’m symptomatic means that it should show up on the test.

The regime that Mpdela’s son went on seems like it would work well for me:

SHORT-TERM TREATMENT FOR EXTREME ODOR

1. Low choline diet (According to the Institute of Medicine, National Academy of Sciences USA 1998, the adequate daily intake of choline is 550 mg for males and 425mg for females for adults) I don’t know if this also applies to people with TMAU. I guess it depends on how much FM03 you produce.
2. Activated charcoal: 700 mg twice daily for 10 days.
3. copper chlorophyllin: 60 mg three times a day after meals for 3 weeks
4. Vitamin B2 (riboflavin): 30-40 mg, three to five times a day with food to enhance the function of whatever FM03 your liver might still be producing
5. a short course of antibiotics, NEOMYCIN, AMOXICILLIN, OR METRONIDAZOLE to modulate or reduce the activity of gut microflora, thus suppressing the production of trimethylamine (TMA)
6. Laxatives, such as lactulose, to decrease intestinal transit time may also reduce the amount of TMA produced in the gut
7. Replace the lactobacilli, also called the “friendly bacteria”, (L. acidophilus, and L. rhamnosus, B. lactis, Steptococcus thermophilus, and/or L. Bulgaricus) after cleaning out gut (recommended by The Trimethylaminuria Foundation in N.Y., based on other professional sources).
8. use acid soaps and body lotions with a pH factor of 5.5 to 6.5. Trimethylamine is a strong base (pH 9.8) that needs to be brought back down to a normal skin pH of 5.5 – 6.5.

LONG TERM, ONGOING TREATMENT

1. Low choline diet
2. Vitamin B2 (riboflavin): 100mg in the a.m. and 100 mg. in the p.m. daily
3. Activated charcoal: 500mg in the a.m. and another 500mg in the p.m. daily
4. cooper chlorophyllin: 200mg in a.m., and 100mg in p.m. daily
5. laxatives as needed, immediately followed by lactobacilli (acidophilus) replacement. NOTE: MUST BE KEPT REFRIGERATED OR THE BACTERIA DIES AT ROOM TEMPERATURE, and then you’re really not replacing the friendly bacteria in the gut.
6. Always use acidic soaps (preferably with Sea Salt) and body lotions with a 5.5-6.5 pH.
7. NO ANTIBIOTICS unless absolutely necessary.

I’m a little angry that I have to deal with all this.  It seems unfair.  Of course life could have been even more “unfair”, so I guess I’ll have to try to play the hand I’m dealt.

The question I pose to my small legion of readers is…. do you try to adapt your lifestyle to fit the disease, live differently due to your condition or do you just try to live as normal as possible and ignore the broadsides that the inconsiderate launch at you?  I like the idea of using a laxative to flush your system, followed by antibiotics, then probiotics and the diet/supplementation.  It seems logical.  I also want to get on an anti-fungal on this routine.

I’ll keep everyone updated!

I’m not sure if I want a positive result since TMAU is incurable and the diet seems only to work for a lucky few (perhaps those with milder cases?).  Even if I do test positive for TMAU I won’t be at ease completely until I got to an ENT (to see about my PND and nasal/breath odor) and a proctologist to test for rectal compliance (I feel a wetness a lot of the times the odor is bad, which is probably IBS-related mucus that just smells awful due to the TMAU, but it’s worth testing).

If I have a TMAU that’s very hard to manage I’ll need to adjust my lifestyle accordingly.  It’s not worth the stress and emotional turmoil of trying to live “normally”.  I plan to devote a great amount of my spare time to advocacy, lobbying and fundraising, but I’m not sure if I can endure the torment of dealing with crowded classes, an office, etc. on a daily basis.

It’s almost a cruel twist of fate that I’m often complemented on my looks, my social graces and my humor, but I’m unable to use these strengths.

An interesting case here:

A guy complained of a fecal odor, said he was suicidal and someone suggested he get tested for Candida yeast.  He got a swab test and that came out positive and was prescribed Nysatin:

[First doctor’s visit]

Went to the doctor today and he scraped my tongue and it tested positive for yeast. He prescribed nystatin to use for 10 days. Will see how that goes…

[10 days later]

I have finished the nystatin and I appear to have no odor, fingers crossed. Nystatin did not give any side effects and I felt normal while taking it.
I noticed a change when taking the fiber at a double dose as anonymous did above. The fiber seemed to clean the intestines and diminish the bacteria causing the odor and then the antibiotics killed what was left. I now take the recommended fiber every day and still can’t believe I may be cured! People are getting in my face talking to me and it is freaking me out! Not used to that… Cashiers actually have conversations with me instead of rushing to get me away. People at the gym are working in with me on the same equipment.

[3 weeks later]

After the Nystatin and continuing on taking Fiber Choice at bedtime I seem to still be odor free for about 3 weeks now. Stayed away from breads, simple sugars, and soda (including diet sodas). Still exercise 6 days a week and drink lots of water and Gatorade. Still paranoid that it’ll come back… It eases my mind to brush my tongue with baking soda on a brush, rinse, and then use the tongue scraper.

[months later]

My candida (posts on page 4) comes and goes at random but not nearly as strong of an odor as before. Antibiotics help but they cannot be taken all the time since they kill good bacteria also. I still sweat a lot and have found that the smell is stuck in some of the clothes and as they get damp, they smell awful! I bleached all my clothes (filling the washer with water and adding half cup of bleach, detergent, and then clothes) and that helped a lot. The fungal problem may come from my feet. My feet sweat and I often get athlete’s feet (even though I’ve always used foot spray) and have toenail fungus which may be the source. That would explain why it keeps coming back. I have been washing my feet with hydrogen peroxide and then apple cider vinegar and that seems to help. I always workout and often get jock itch which is similar to athlete’s feet. Using jock itch spray (Lotrimine) on my ass (not anus) where my lower buttocks creases into my hamstring seems to stop my ass from sweating. A light coat of Gold Bond powder in my underwear keeps me cool most times.

Basically what I see here is someone who probably has undiagnosed TMAU that was temporarily helped by adjusting his diet slightly and taking Nystatin.  Maybe certain anti-fungals help temporarily like certain antibiotics (Flagyl, etc.) do.

Thoughts on professional emotional support

I have a therapist willing to work with me, but I’m not sure how much can be done since I think the root of my problem is physical.  Given my circumstances I think I’m holding up okay emotionally.  I’m a little angry and dejected at having to go through this (and I also have IBS, ugh).

Laundry

Any special tips?  White vinegar during the rinse cycle is something I’ve heard, but I haven’t done yet.

I’ll update later with the diet I’ll be going on starting tomorrow and the supplement regime.

Thanks for reading!

***

Situationism developed upon the theories of reification and commodity fetishism, pioneered by Karl Marx and Georg Lukács, proclaiming “the more you consume the less you live.” Guy Debord’s The Society of the Spectacle extends Karl Marx’s concept of reification, which related solely to commodities, to the whole of society. Workers alienated and exploited by the capitalist mode of production become passive consumers outside of the workplace as well. The Society of the Spectacle argues that modern society has become a mere “spectacle” in which authentic social life as been replaced by social interaction mediated by “images.” Debord claims that “All that was once directly lived has become mere representation” (Debord, 1). Debord and his colleagues sought to recapture life through the subversion of the society of the spectacle. Their intentions were trumpeted openly in their organization’s journal, “If we do not want to participate in the spectacle of the end of the world, we will have to work towards the end of the world of the spectacle.”

In dense Hegelian prose Debord’s The Society of the Spectacle features 221 theses, the likes of which include, “In a world which really is topsy-turvy, the true is a moment of the false” (Debord, 9). The style of the work, the use of short declarations, is a deliberate representation of the fragmentation he sees in the modern world. The spectacle in the modern urban environment was described as Debord as, “[A force that] reunites the separate, but reunites them as separate” (Debord, Thesis 29). In other words in modern society people are plucked from all over the world and brought together, through the process of urbanization, a consequence of capitalist development, but we are living separate from each other, collectively. One can consider the relationship between an average apartment dweller and his neighbor. Both parties may exchange pleasantries, but on the whole they might only talk to one another a few times a year. We live together in a psuedo-community, rather than an authentic one; there is no organic community or bonds of solidarity between people living so close to each other, but if forced to someone would be to converse with his neighbor. Topics that would immediately come to mind would be the latest movie out in theaters, the new electronic gadget being marketed on television, etc. Yet in these conversations we can see the sterility of life in the spectacle. We can only communicate through the use of images imposed upon us, so therefore we cannot fundamentally relate to one another as human beings. We are mere spectators to the spectacle, not full participants in our own lives. “[Debord] wrote that the human experience, under Spectacle, could be characterized by the ‘degradation of being into having’” (Harold, 4).

***

An interesting critique of social relations in late capitalist society and one that would prove influential during the upheavals of May 68’ in France, but it also got me thinking about my own life and my condition.

I’ve been largely isolated for the last several months.  I was tested for TMAU a couple of weeks ago, but do the fact that my test was “compromised” I will be retested on Monday.  I’m fairly certain I have TMAU, but getting documentation of my disorder is important for me.  I was on the low choline diet for one week, but I went off it to resume a normal diet in order to have an accurate test result.  After one week on the diet I had to foray back into the real world and I realized that the one week of diligent exercise, supplementation and diet didn’t have a great effect (yet).  I can’t be bothered to divulge details, but it was a painful, embarrassing experience.  In the late morning in an attempt to “get away from it all”, I wandered into Central Park, found a quiet spot and jotted the following note into my cell phone:

As I sit on what ostensibly seems to be a nice day, on a ledge on the edge of Central Park, I glance at the hundreds of people who have passed by. I can’t help, but imagine that I would kill to trade places with any one of them. The teens playing ball in the park, even the charity field trips of inner-city kids who couldn’t dream of the resources I’ve had at my disposal, the lovers sitting on a park benches, the motivated joggers, the wide-eyed tourists. I’m not sure about the homeless man sleeping under that tree, but the fact that there is doubt about that answer in my mind is symptomatic of how I feel today.

The rest of my day was better.  I reclaimed some of my swagger and approached the rest of the day with confidence, unashamed of something that I was doing my best to control.

To kill some time until Monday when I can retake the test and resume the TMAU diet in earnest, I’ve been reading, writing a bit and watching movies.  Disconcertingly, when I’m watching movies I feel like I’m beginning to become unable to relate to the  characters I am viewing.  Without great hope that my treatment plan will be of great effect in my case, I feel like I am watching characters act out emotions and experiences that I might never get a chance to live out myself.  The disconnect I feel with the characters is endemic of the alienation I feel with towards society.  The more over-the-top and ridiculous movies that I use to tend to avoid in favor of more realistic, independent films, are more enjoyable for me now for their sheer “escapist” value.

Right now I feel like I’m living a “psuedo-life”, sort of going through the emotions, but deprived of some of the more enjoyable and passionate parts of life.  I do have memories of when my odor was more under control and it’s my earnest hope that I will not have to cling to these memories forever, that perhaps I will be able to make new, better ones.  While I am trapped in this “psuedo” existence, it’s almost painful to watch displays of different, more “real” life.  I don’t feel any contempt towards others, even when they don’t understand what I am going through, only longing for what they have.  Most of them have problems, yes, sometimes big problems, but most of their problems are environmental.  They can get up and leave if they wanted.  They are probably not brave enough, or are bound by commitments that I can’t understand, but if they had the spirit I think I had they would either collide with their problems or they would flee from them and look for tranquility somewhere.  I understand though that my problem is one I can’t run away from.  I envy the freedom I perceive others as having, but I recognize the predicament I find myself in and I see no alternative, but “to suffer the slings and arrows of outrageous fortune.”

I guess my wish is that I can get my condition under control to the point where I can once again blame any lingering alienation I feel on the bourgeoisie’s exploitation of my labor.  For now my main complaints are with this damn FMO3 enzyme.

***

Debord, Guy. The Society of the Spectacle. Donald Nicholson-Smith, trans. Cambridge: Zone Books, 1995.

Harold, Christine. OurSpace. Minneapolis: University of Minnesota Press, 2007.