Thank you for asking your query at DoctorSpring.
I understand your concern and will try my best to help you. I would like to get some additional information from you so that I can provide a more learned opinion.
1. Can you describe a typical scenario where this smell is really troubling you. (As in what time of the day , after any particular activity ?). Or are you having it all the time ?
2. Does this smell increase if you sweat a lot ?
3. Is the smell more intense form any part of the body ?
4. How does someone close to you (a family member / partner / close friend) describe this issue ? Do they feel the smell too ?
5. Was an urine culture done ?
6. What have you tried so far ? Have you taken any antibiotics / other medications ?
You can reply as a followup
Patient replied :
Hi, Thank you for your response. Here are a few links to files I have regarding this issue.
This is a picture of what I saw in clear stool after laxatives. I also saw a small one in my urine a few days ago.
Here are my lactulose hydrogen breath test results.
Now to answer your questions.
1. A typical scenario: I'm at home I don't smell anything. I eat breakfast,I feel bloated, no gas, then a few hours later I get a faint egg odor or flatulence odor. I never have gas with this odor. I don't even feel a sensation of passing gas. It's gone again, but then I go to the store and I'm in public. There is no smell at first, but then all the sudden a very strong egg or flatulence odor comes and it's very noticeable. The egg odor I believe is more prominent with sugary foods.If I'm at home I smell it more so at night. If I'm eating regular food I get a flatulence like odor. Lately it's been very faint until I get in public, but when I did my first colon cleanse it was strong enough that hospital staff were joking about it. It stunk up the hospital room.
2.No it's not related to sweat as far as I know.
3.The weird thing is I don't smell it in urine or stool or off my body. The one time I smelled it in stool was when I did the first colon cleanse and it wasn't till after several bowl movements that the stool smelled like the egg odor.
4.My mom's boyfriend noticed it when it was stronger before or when I'm in public and the smell comes. He said that it was making him sick. My mom notices it when it's very very strong. She's only smelled it a couple of times. Other than that my roommate back at Berkeley told someone I was farting all the time behind my back. Then in the cafe in Berkeley the smell happened and everyone turned around and looked at me and started laughing and pointing. People have gotten off a bus before the night when I had done the fist colon cleanse. They said I smelled like poop. I didn't even smell it when it first started happening. I would walk past people and they would say I farted when I didn't. I'd have no idea what they were talking about until I started to smell it myself. I sat in a small computer lab and the smell kept happening and people kept saying someone farted. I would go to the bathroom and try to see where the smell was coming from, but nothing on me smelled like it. Even if I did pass gas it would not smell like the random egg smell that kept coming.
5. Yes I had several. I always have a large value of leukocytes in my urine and it's cloudy. The white blood cell count on the one I'm looking at says 40-60. I've had bad repeated UTIs in the past where I had hematuria to the point where urine appeared like red koolaid. I kept getting antibiotics and would get repeated infections. I was checked for clamydia and bacterial vaginosis and I don't have either. I still have white blood cells, cloudy urine, and what looks like epithelial cells, but I do not have a UTI or symptoms of a yeast infection.
6. Unfortunately at the same time as this infection, I broke out with bizarre rashes (looked like maybe bed bugs or something) they caused swelling and streaking on my limbs. I was put on cephlaxin (500 MG), an IV of Erythromycin, Vancomycin, and I was given Metronidazole (500 MG) for stomach issue. In the past I've been on a lot of antibiotics and I've taken generic isotrentinoin for 4 about months.
Recently I was given a prescription for helminths. It seemed to help a little with the vertigo and I started taking a liquid supplement of paraFree (black walnut oil, wormwood, and clove) My vertigo has improved, but it's still there mostly when I eat sweets. I was suffering with blurring eyes, disoriented feeling, chronic rocking sensation with the smell. The smell isn't as strong (I think the colon flushes helped with that, but I don't know) now. I also take nullo internal body deodorant, but I don't know if it works yet. With diet I try to eliminate sugars, pork, and EGGS especially. Eggs seem to contribute because of sulfur. I eat mostly vegetables and drink water. I don't drink dairy milk either. Either rice or coconut milk.
As I mentioned above I've had most gastro tests and they turn out pretty much normal. When I had my upper endoscopy he said I had inflammation and that's all he saw. That was back when I was having slight abdominal pain with eating and the odor following a few hours after. From the colonoscopy all he saw was a few non bleeding internal hemorrhoids.
I'm wondering if I did have parasites and the smell is a result of SIBO caused by them, but then I'm not a Dr. so it's just a theory. By the way I've scheduled an appointment with a urologist Tues. to investigate my urological symptoms and see if it's connected. The only thing I haven't done was see if it's a metabolic problem, but I don't think it is. TMAU would be the only thing that matches, but that's highly unlikely, especially because the egg odor is not in my urine, stool, or sweat. I've found a few other people with my same symptoms and a girl I have yet to talk to, but my family knows her personally. Thus far no one has received an answer.
**Also, I forgot to mention I don't have a history of ibs or stomach problems. None of this was happening before 4 months ago when I went to Berkeley.
Thanks for answering the questions in detail. This history gives me a much more accurate picture of what you are experiencing and a few possibilities are coming to mind. First off, do not take any more antibiotics (for the time being) and if you haven't already, and stop taking Isotretinoin. The antibiotics are not helping as they should and you want to avoid resistance to antibiotics. Furthermore, there have been theories that isotretinoin or accutane can cause symptoms of irritable bowel disease, and although this is not widely proven, you will want to avoid this in your case.
Judging from the history you have related, one thing that we can say for sure is that you are having difficulties digesting carbohydrates. Your lactulose hydrogen breath tests show that your bowels are producing hydrogen, upon a test dose of lactulose, indicating that sugars are not being properly broken down, which is indicative of small intestinal bowel overgrowth. Furthermore, you have noticed yourself that when you eat sweets or sugary items, the smell or odor is more prominent. The antibiotics did not cure the SIBO suggesting that there may be another underlying illness causing the SIBO to persist. You seem to have ruled out many possible causes including infectious causes, food allergies, and celiac disease during your process of elimination in the recent past. Sometimes in instances like these, process of elimination is the best route in order to determine a precise diagnosis. I advise you to seek the help of specialists including a gastroenterology surgeon and a diagnostic specialist.
Here is what I suggest:
Your main complaint is an 'eggy' odor that is causing you much frustration and interfering with your daily life. Consider the possibility of an enzyme disorder in which you have inability to breakdown ingested particles, causing circulation of toxic substances and the odor to manifest. The condition which you have mentioned (TMAU) or trimethylaminuria is not a common disorder, as well as hypermethioninemia which can both be plausible in causing your symptoms. TMAU is diagnosed by 24 hour urine testing including measuring the ratio of trimethylamine to trimethylamine N-oxide in the urine. Hypermethioninemia can be diagnosed by blood tests in which raised methionine levels are noted, and dimethylsufide is detected in the urine. Discuss with your local general practitioner the possibility of a metabolic disorder and consider doing these tests as they are relatively easy and non-invasive.
If these tests come back negative, make an appointment with a reputed gastroenterologist as you may need more invasive tests to determine underlying illness.
Another likely possibility that would tie together all your symptoms, including your gastrointestinal issues (motility), frequent UTI's and bleeding in urine, bizarre rashes and skin streaking is a systemic illness or disorder such as systemic scleroderma. Most often the skin is largely involved, but organs such as lungs, kidney, and GI tract can all be involved. To diagnose, blood tests to look detect anti-nuclear antibodies can be administered.
In consult with your gastroenterologist, do a small intestinal biopsy. In this test an x-ray guided tube is inserted from the mouth and is passed through the esophagus, stomach and into the small intestine where a small bit of tissue is taken for biopsy. This test can help to diagnose motility disorders if present. This may be a reason for small bacterial overgrowth in your gut which is not getting cured by the courses of antibiotics that you have taken. Another test your gastroenterologist can do is a barium meal and x-ray of the foregut to look for other structural abnormalities.
Consider the possibility of a pancreatic issue. Do blood tests for pancreatic enzymes if you already done so, such as pancreatic amylase and lipase. If blood tests are cause suspicion for pancreatic disorder, here is another test that is helpful in diagnosing pancreatic illness that is called the secretin test. In this test, your physician will insert a tube through the mouth all the way down to the duodenum, administer a dose of secretin into the bloodstream, and take sample aspirates from the duodenum for evaluation. This test can give you a good idea of basic pancreatic function.
These are likely explanations for the symptoms you are experiencing. Considering the major impact your illness has had on your life and functionality, I urge you to be patient and persistent in coming to a reasonable diagnosis. Work closely with your doctors and specialists to rule out all possible causes, as I am confident you will get to the route of the issue if so. As and when you come to an accurate diagnosis, solutions will be available to you in how to treat the illness. I hope this helps. Please update any information when necessary and feel free to ask any follow up questions. Take care and good luck.
Patient replied :
Hello again. Thank you for your help. I made an appointment Tues. with a urologist and hopefully they can check me for pancreatic and kidney function as well as cystitis. In the mean time, I want to try treating the SIBO and see if everything else goes away. I think that's what is causing the odor and giving me the bad stomach cramps and bloating.
I need your advice on the best course of treatment for SIBO. From what I looked up online it said that you should take an antibiotic, followed by a probiotic, and stick to a diet that eliminates carbs and sugars.
Should I be worried about taking more antibiotics? Do you have recommendations for probiotics? I read that some probiotics can actually aggravate SIBO, but I'm not sure. I was also wondering about supplements and herbs. I read that people take HCl tablets to increase stomach acid and control bacteria and I also read that oil of oregano and colloidal silver can be useful as mild antibiotics.There are so many different remedies people come up with it is very confusing.
I've already changed my diet. I only eat raw vegetables, chicken, fish, nuts, and just drink water or unsweetened coconut milk. I still get pains and bloating, but I think it might just be the SIBO, which is still active. Would you recommend an anti fungal as well to treat candida overgrowth along with SIBO? And again thanks for your help. I would def. appreciate a treatment list for SIBO, preferably, the most cost effective route.
Your condition does suggest SIBO and you may benefit from treatment with antibiotics. Here is what I suggest:
1. The best drug I can suggest for you is an antibiotic called Ramifixin. It is known to have good effects in the treatment of individuals with SIBO. If you haven't already been on this antibiotic, talk to your local physician about starting the medication. You will need to take 500 mg orally every 8 hours for two weeks. If you have insurance, it may be able to cover some of the costs of the medication. It may take a bit of trial and error to find the right antibiotic for you, but you can avoid doing expensive and invasive testing. If for some reason Ramifixin does not work for you ( allergic, etc., ) consider Augmentin which is a combo of amoxicillin and clavulanic acid. Both can work well in reducing bacteria in the small bowel.
2. If your local gastroenterologist and you decide that you have a motility issue (upon further testing if necessary), then consider adding a prokinetic medication to your regimen such as metoclopromide. This may be helpful in the short term until the underlying condition causing dysmotiltiy is addressed.
3. Experimental studies are currently available with some suggestion that probiotics may prevent complications of SIBO ( such as Lactobacillus, Bifidobacterium). There has not been sufficient evidence of probiotics being beneficial in the treatment of SIBO and their role is uncertain however.
4. Prebiotics (which are found naturally in foods) may be beneficial in promoting 'good' bacteria of the gut to help fight the infestation 'bad' bacterial overgrowth. These can be found naturally in garlic, onions, banana and other fruits and vegetables. This is not well proven however.
5. As far as your diet is concerned, it seems like you have already made all the major changes. Cutting out the carbohydrates, especially refined carbohydrates, and eating natural foods and lots of fiber is the best way to starve the organisms (as they love to feed on sugar), and keep your bowels healthy. Understand that once the bacteria is killed, your intestines will need time to heal, and you will need to stay on this diet for a few years to recover completely. It is a lifestyle change that you may need to adapt for the long term. Your body needs time to adjust to the nutritional consequences of the illness and the new diet regime as well. I recommend taking daily multivitamins, including vitaming b12, calcium and magnesium supplements which can be purchased over the counter.
This should help in the symptoms of SIBO and hopefully you can return to your normal activity as soon as possible. If the symptoms persist, or recur, consider getting evaluated for the underlying cause (dysmotilty) if present. Please follow up with any concerns or questions if necessary. Take care and be well.
Patient replied :
Hi, thanks for answering. So I saw the urologist and I'm going to get an ultrasound of my kidney/urinary tract.
In the mean time I've started trying to treat my SIBO. I'm on the specific carbohydrate diet and today I took an HCl tablet after I ate to help with digestion. It really helped me out a lot. It took the bloating and puffiness away and I felt amazing and light afterwards. I also didn't notice any egg like odors. The only strange thing I can't explain, which is the reason for my follow up question, is the weird ammonia odor I'm getting in my nose. I got it before I tried treating the SIBO just not as much. It was occasionally at night. After I took the pill I felt the bloating go away and I started getting really powerful smells of ammonia in my nose, it's very sickening.After seeing how much the HCl tablet helped I realize my digestion really wasn't working properly before. Could this be the breakdown of amino acids from my food or something?
Hello again. There are a couple of reasons for the 'ammonia' odor that you are experiencing. The diet you are on entails you to eat less carbs. Your body notices the carb deficit and starts to break down protein for energy ~ hence the smell of ammonia. Furthermore, the HCL tablets have a tendency to increase your body's ph and could contribute more to the odor and possibly have other adverse effects ~ please use with caution. If you feel the smell is increasing after taking the tablets, stop taking them and adjust your diet accordingly.
Ammonia odors can also arise when you have poorly functioning kidneys (unable to excrete excess ammonia). Your ultrasound images may reveal something about your urinary tract and kidneys that could be an underlying cause for the symptom. Discuss with your urologist about your options. Take care.