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- Jul 4, 2018
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Ever since January 2019, I’ve been dealing with malodor issues such as fish body odor, PATM, FBO (fecal body odor), burning rubber, and more. People would make comments about it at my warehouse job and then people on public transportation would do the same, but I was oblivious because I didn’t think it was me and I couldn’t smell it myself. From January 2019 to August 2019, I always heard things such as “it smells like fish in here, omg who forgot to wear deodorant, “evil looks, and talking trash behind my back.
The same thing happened when I went back to school and at my internship (now full-time job). I was bullied and harassed by colleagues, professors, managers, staff members, co-workers, and more. Nonstop passive jokes about hygiene, taking a shower, spraying spray/perfume, etc. To the extreme, I would get threats and some people would want to get into a physical altercation with me because of this. This happened when I was homeless back in late November to December 2020 when my family decided to “file” a protective order against me and I had to sleep in motels until the court case was over.
I’ve been going to my primary care doctor since October 25, 2019, about it but I was always told that I “did not smell” and I would need to get mental help/see a therapist. As the months went on, the odor complaints kept getting worse from my colleagues. I spent hours traveling to different hospitals going to different hospitals wasting time and insurance to get told we don’t smell anything but would make indirect comments about it. I realized most people never heard of this condition, so everyone assumed I did not take showers or had poor hygiene.
It wasn’t until May 31st, 2021, I had my first appointment with a naturopathic doctor. She was the only person who took me seriously and wanted to get to the root cause of my problems. She ordered various tests for me such as a stool analysis, sibo test kit, and more to diagnose me based on my symptoms.
I was diagnosed with Trimethylaminuria. She believes that this was caused by lifestyle choices such as poor eating, sedentary lifestyle, because I took the genetic test for TMAU, and it came back negative. In addition to this diagnosis, I also have the following:
1. Leaky gut (paracellular)
2. Methane dominant sibo
3. Gut dysbiosis
4. Hypoglycemia
5. Hyperthyroidism
6. Low stomach acid
7. Adrenal fatigue
Even in my apartment, I still get people banging on the walls and yelling at me when I poop, eat, shower, burp, fart, rub my skin, and more. Unfortunately, this red gumball has affected the quality of my relationships because no one wants to be around someone that smells which is understandable, but the odor is not due to hygiene.
TLDR - I was diagnosed with a rare condition called TMAU from my naturopathic doctor. I had this condition for three years and my life has not been the same. Despite the setbacks, I cannot let this condition take over my life or use it as an excuse to why I do not like my life. The only thing in my control is to eat healthy, avoid trigger foods (eggs, beans, liver), and exercise regularly. This was the result of an abusive and stressful upbringing with poor eating habits (takeout, snacking, junk food) but I have the power to change it.
Principles and Lessons
The same thing happened when I went back to school and at my internship (now full-time job). I was bullied and harassed by colleagues, professors, managers, staff members, co-workers, and more. Nonstop passive jokes about hygiene, taking a shower, spraying spray/perfume, etc. To the extreme, I would get threats and some people would want to get into a physical altercation with me because of this. This happened when I was homeless back in late November to December 2020 when my family decided to “file” a protective order against me and I had to sleep in motels until the court case was over.
I’ve been going to my primary care doctor since October 25, 2019, about it but I was always told that I “did not smell” and I would need to get mental help/see a therapist. As the months went on, the odor complaints kept getting worse from my colleagues. I spent hours traveling to different hospitals going to different hospitals wasting time and insurance to get told we don’t smell anything but would make indirect comments about it. I realized most people never heard of this condition, so everyone assumed I did not take showers or had poor hygiene.
It wasn’t until May 31st, 2021, I had my first appointment with a naturopathic doctor. She was the only person who took me seriously and wanted to get to the root cause of my problems. She ordered various tests for me such as a stool analysis, sibo test kit, and more to diagnose me based on my symptoms.
I was diagnosed with Trimethylaminuria. She believes that this was caused by lifestyle choices such as poor eating, sedentary lifestyle, because I took the genetic test for TMAU, and it came back negative. In addition to this diagnosis, I also have the following:
1. Leaky gut (paracellular)
2. Methane dominant sibo
3. Gut dysbiosis
4. Hypoglycemia
5. Hyperthyroidism
6. Low stomach acid
7. Adrenal fatigue
Even in my apartment, I still get people banging on the walls and yelling at me when I poop, eat, shower, burp, fart, rub my skin, and more. Unfortunately, this red gumball has affected the quality of my relationships because no one wants to be around someone that smells which is understandable, but the odor is not due to hygiene.
TLDR - I was diagnosed with a rare condition called TMAU from my naturopathic doctor. I had this condition for three years and my life has not been the same. Despite the setbacks, I cannot let this condition take over my life or use it as an excuse to why I do not like my life. The only thing in my control is to eat healthy, avoid trigger foods (eggs, beans, liver), and exercise regularly. This was the result of an abusive and stressful upbringing with poor eating habits (takeout, snacking, junk food) but I have the power to change it.
Principles and Lessons
- Conventional Medicine is about symptoms and diseases. Not prevention
- After going from doctor to doctor to understand my health issue, I realized that most conventional doctors only want to treat symptoms while ignoring the root cause to keep you sick. If they can treat you with a pill, shot, or surgery then your problem does not exist
- In April 2021, I asked my PCP about a vitamin and mineral deficiency test. She asked me “which one do you want” and I was confused because I wanted to get all of my vitamins and mineral checked but my pcp told me I did not have any symptoms of a V&M deficiency. I was diagnosed with low vitamin D levels from my ND. I showed my primary care doctor my LabCorp results and referenced my previous appointment and I was told "you don't have any symptoms." When
- After going from doctor to doctor to understand my health issue, I realized that most conventional doctors only want to treat symptoms while ignoring the root cause to keep you sick. If they can treat you with a pill, shot, or surgery then your problem does not exist
- Never underestimate how stress affects the body
- Taking charge of your health
- I’m thankful I never let my pcp tell me that I was “fine” when my body was telling me otherwise. I was proactive and decided to find an answer. It took thousands of YouTube videos, few books, and research
- I watched people such as Dr.Eric Berg, Dr. Eric Bakker, Dr.Sten Ekberg, Dr. Kenberry to understand how the body works.
- Book Recommendation Dr. Colbert's Healthy Gut Zone: Heal Your Digestive System to Restore Your Body and Renew Your Mind
- The importance of having a meaning and purpose
- I don’t know how I've been able to live with this for three years. I’ve been homeless, items vandalized, people wish death on me, publicly humiliated from managers, friends, family, professors, co-workers. If it wasn’t for my niece, I don’t know where I would be right now. I can’t risk her growing up without me because I do not want her to be a product of her environment. When I was her age, I had no one I could talk to or defend me from abuse, no love or support. Despite what I went through, I was able to make it out and break the cycle, but I can’t say the same thing will happen to her.
- My niece is my M&P to stay alive despite the ridicule I go through everyday.
- Setting up your kids for success
- If you have kids, please do your best to raise them.
- Never underestimate how a shitty upbringing can affect their mental state.
- Articles about malodor
Trimethylaminuria ('fish odour syndrome')
Read more about trimethylaminuria which is an uncommon genetic disorder that causes a strong body odour, usually described as like rotting fish, poo or rubbish.www.nhs.uk
Trimethylaminuria | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program
A collection of disease information resources and questions answered by our Genetic and Rare Diseases Information Specialists for Trimethylaminuriararediseases.info.nih.gov
Lab Test I took
- Cyrex Tests & Arrays (cyrexlabs.com)
- Array 10 & 2
- GI Effects® Stool Profiles | Genova Diagnostics (gdx.net)
- Small Intestinal Bacterial Overgrowth (SIBO) Test Prep | Genova Diagnostics (gdx.net)
- Test | Trimethylaminuria via the FMO3 Gene - PreventionGenetics
- SpectraCell Laboratories | Micronutrient Test Panel
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