I am 26 years old and living in Switzerland. I work in marketing. I currently weigh only 62kg (136lbs) even though I am 184 cm (6 ft) tall. Two years ago, I developed a small intestinal bacterial overgrowth (SIBO) infection suddenly after taking 20g of a probiotic called Perfect Pass Prebiotic. It contains partially hydrolyzed guar gum. I was also taking two lactobacillus probiotics per day during during the two months leading up to the SIBO. For the SIBO, I was treated with Atrantil and Xifaxan 4 times per day for two weeks. Antratil is an herb combination used to treat SIBO and Xifaxan (rifaximin) is a broad spectrum antibiotic. After these treatments, I developed an overgrowth of bilophilia and desulfurio bacteria. This has led to a severe sulfur intolerance. I have not found any treatment for this yet. Before developing SIBO, I used antihistamine (desloratadine, 5mg every day for two years) and Finacapil (finasteride) for the last 8 years, but I stopped taking it four months ago.
Since developing the SIBO, I have developed several food sensitivities including: oxalate, salicylate, and sulfur and histamine intolerances. I have lost 5kgs. I have also developed very high ammonia. That is my biggest issue. I had blood tests to confirm the high ammonia. It seems that I can only eat five foods without triggering a reaction: rice, chicken, carrots, fennel, and gluten free bread. When I eat anything else, I have almost all the symptoms possible. Before developing SIBO, I could eat anything. My diet was diverse and healthy.
Genetic Polymorphisms
I have since learned that I have several genetic polymorphisms which either upregulate or downregulate the activity of several enzymes involved in energy production and antioxidant processes. I have a fast cystathionine beta-synthase (CBS) enzyme, which may be at the root of my current problems. The CBS enzyme uses vitamin B6 to convert the amino acids homocysteine and serine into something called cystathionine, which then converts to cysteine and glutathione, a critical antioxidant pathway. Individuals with high CBS activity, end up with high levels of taurine and ammonia and lower levels of cystathionine and homocysteine, and importantly, lower levels of glutathione, making them more apt to suffer from infections and reactions to foods and medications. CBS upregulation also upsets the urea cycle, which means that I have problems with methylation.
If that were not bad enough, I have learned that I also have several SNPs that impact metabolism.
- FUT2 +/+
- GAD1 (2) +/- (1) +/+
- HFE H63D +/+
- MAT1A +/+
- CBS C699T +/-
- MTRR K350A +/-
- NOS3 (3) +/-
- PEMT (2) +/-
- BCMO1 (4) +/-
- AGXT +/-
- MTHFR +/+
- BHMT+/+
I have low homocysteine in blood, low lactic acid, high histamine, high bilirubin.
Nutrient Deficiencies
Nutrient testing shows that I have very low blood ceruloplasmin and copper but normal intracellular copper. Testing showed that I am also low in vitamins A, C, K2, manganese, selenium, magnesium, and low in vitamins B2, B3, B5, B9, and B12. Because I also have gastritis, sulfate reducing bacteria overgrowth and high ammonia, issues with sulphur, oxalates and salicylates etc., I don’t tolerate most oral supplements or things like natural vitamin C or beef liver. I also can’t tolerate methyl and sulfur vitamins and minerals.
I found a solution with IV multivitamin and mineral but it contained glycine and way too much chromium and iron and because of my hemochromatosis, it probably depleted my manganese, folate, etc. My manganese and folate concentrations are very low in blood. The IV was helping me a lot first but the ammonia issue began to be way too high and as did the blood chromium, so I stopped. The IV had all the vitamins and minerals, plus glycine and phosphatidylcholine.
I had an ADK supplement with 5000UI Vitamin A, 5000UI Vitamin D, and 600mg Vitamin K2, MK7 synthetic and it was helping a lot with the ammonia but gave me bad oxalate burning bladder. Manganese helped a lot, but since I don’t have enough vitamin C, my CYP7A1 enzyme, which manganese triggers, is not working well. The CYP7A1 enzyme converts cholesterol into bile acid. As a result of the manganese supplement, I developed cholestasis, but when I take vitamin C, which is the missing piece here, I get oxalate issues. It seems that I cannot win. The manganese may cause a loss of choline or glycine but both contain ammonia and sulfur, so I can’t take it.
I did tolerate the vitamin C in the IV mix, though. It could have been because it came with the other B vitamins. This leads me to believe that perhaps I can tolerate transdermal vitamins or another formulation of the IV nutrients.
I know that I need thiamine (vitamin B1) but I have normal TPP in blood and when I tried to take it in HCL, mononitrate, TPP even at 1 mg, it gave me the sulfur issue and high ammonia. More recently, I had an organic acid test (OAT). It showed that I have low vitamin B6 in urine test, but it was high in the blood, I have very high inorganic phosphate in blood, normal magnesium in blood but low intracellular magnesium. Both probably are caused by too much iron. I really need vitamin C, but because of oxalate issue I cannot take it, and if I take vitamin B6, it will further upregulate my CBS and produce more sulfite, sulfate, ammonia, and hydrogen sulfide.
I should note that I always have gallbladder pain, and flow issue, and I can’t digest fat, but all gallbladder supplements that contain sulfur give me issues. So I don’t know how to take manganese without cholestasis, vitamin c without oxalate issue and B1 without sulfur issue and folinic acid without glutamate issue. I have run out of idea to cure myself. If anyone can help, it would be great!
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Any updates – did anything help you?
Look into the andy cutler protocol for mercury chelation.
This might be helpful:
B12, instead of methly-Cobalamin perhaps Hydroxocobalamin 4-8mg/day, the Hydroxo derivative will help chelate sulphur while supporting methylation
150mcg/Molybdenum to boost body’s Sulphur metabolism + co-factor in Thiamine reactions
1 pint of celery juice/day for the ammonia?
might be worth doing a 3 month course natural antimicrobials + probiotics along with a dominantly ketogenic diet to wipe out the sulphur reducing bacteria and change the gut microbiome
with 6drops oregano oil twice/day (in capsule)
+600mg active hypericum perforatum (worm wood extract)
+ probiotics (lactobacillus & bifidobacterium species and specifically streptococcus thermophilus )
+5g of prebiotic fiber agave inulin to help get rid of Sulphur reducing bacteria like Desulfovibrio
A decent heavy metal detoxification shake/day would go along way 2 containing
Cilantro, Dulse, Spirulina, Barely wheat grass juice powder, cucumber, blue berries in order to reduce the number of enzymes in your body being deactivated and take the pressure off the body from your genetic SNPs
I have salicylate, sulfur, histamine, and fructose/fructan intolerance. I tried a lot of supplements across the spectrum and either they didn’t help or I couldn’t tolerate them. I was very sick with everything I ate last summer, but I’m getting better. Once I stopped ALL supplements I could slowly introduce new foods. Cook and peel vegetables and you’ll do better. I follow a quasi low salicylate/low histamine diet but have been able to add in a variety of vegetables, pure dairy in small amounts and white organic bread (all bread has some degree of fructans, whole grains more than others…I’m wondering if that is the culprit in gluten sensitivity). Listen to Dr. Greg Nigh in Portland (podcasts on Sulfite sensitivity) and search for: “Why do I react to histamine, sulfites, and salicylate?” By Margaret Moss, MA UCTD DipION MBANT. Since I cannot handle any supplements, I began to wonder if my salicylate sensitivity was causing my body to react to ANY concentrated substance. Good luck. The gold standard is to increase variety in your diet- but you might have to stop all supplements first.
Terri,
With all due respect, Greg Nigh is the LAST person anyone with sulfur “sensitivity” (not a real medical condition) should listen to, ever. Sulfur isn’t a bad thing, it’s essential. Plus, he completely ignores — apparently isn’t even aware — that meat, dairy, etc — is high in sulfur. Just concentrates on vegetable sources.
But I do agree in general with your final statement: The thing to do is to work to increase variety in one’s diet, as that helps change the microbiome which is key. I’m not sure that means stopping ‘all supplements’, especially if one is known/proven to be deficient in certain things, but dietary restriction is the worst thing to do.
Have you considered mold toxicity? Unlikely that the prebiotic caused SIBO.
Hi, I have a world of gut issues myself and methylation issues….gene defects etc. have had insomnia for 5 years. low glutathione, etc. poor bile/ digestion so I take bile salts. have eaten healthy, organic, grown my own for this whole time. have had lots of tests done. but im reading the info from this very smart lady on instagram. Kristina @mind.mood.microbes. I think she could help us both!
Thank you for sharing this blog with us its very useful for everyone.
To: I am 26 years old and living in Switzerland.
https://www.sgk.swiss/about-2234.html
Dr. John van Limburg Stirum, Environmental/Functional/Nutritional Medicine.
Kilchberg, ZH +41 44 716 48 48
I am being treated by him since November 2020. He deals with very complex chronic medical issues. I would say one the best medical practitioners and his approach in many ways is similar to Dr. Lonsdale. I had seen at minimum 4 dozen MD’s in the Caribbean, the USA, Canada and Switzerland over period of many years. He states most complex conditions start with some form of toxicity i.e. dental amalgam, if you don’t have any amalgam it could have been passed on to you from your mother during pregnancy) dead teeth that had root canal treatment (toxin producing anaerobic bacteria in dead teeth), medication induced toxicity or any other endogenous(biotoxins from indoor mold)/exogenous form of toxicity causing thiamine or other micro-nutrient deficiencies… 1.) step is to identify the source the toxins and eliminating it, then detoxify with chelators like DMPS etc. nutrient infusions, TTFD, micro-nutrients
Ich spreche Deutsch und Franzoesisch if you want to contact me. wishing you the best in your recovery.
Bernard Stricker
Wigoltingen, Switzerland
bst@csi-pr.com
I also have exactly the same problem, needing vit c but this makes me often feeling worse because of oxalate metabolism disruption. I frequently have cloudy urin. taking b6 helps but taking too much is increasing histamine an sulfur problems because this opens the door down the transsulfuration pathway. and this pathway is also disrupted. what helps is lorazepam this works anti-inflammatory and calming on the gut but unfortunately lasts only 24 hours and is highly addictive. using it only on bad days. I also have very low sIgA so bad bacteria can easily bind to the gut wall but good bacteria like bifido can´t anymore. I have also salicylate intolerance and my legs became numb. housebound for 2,5 years now. sick for more than 10 years.
now starting to use immunoglobulin weekly injections. see what will hapen.
can only tolerate white non-parboiled rice, little young potato, some pork, little carrots, little curcumber and corn wafles. I eat them instead of bread. no butter. only little pork on it.
I have almost zero Bifido bacteria. normal lactobacteria, very high klebsiella, very high enterococcus. I have done also done a microbiome dna test which was extremely bad. diversity very low. citrobacter high and so on. but this was 2 years ago. I have read that some people with dysbiosis helped resistant starch. anyone out there who has tried this ?
So if anyone has found a solution for a situation like we have please email me or reply. Thanks.
joopiter76 a gmx.de
Funny but I also fee like I am reading my own story. I already bought like million tests and supplements but there is always some another issue behind the corner. Last years I have been thinking about FMT but finding the right donor or a realible clinic is a bit tricky. This week I started to supplement with individual probiotics from the company probione.com/en/. They found out I have zero lactobacillus and almost zero bifidobacteria in my gut. So you might check your microbiome too, I think there might be an answer to these kinds of problems.
Determining the exact cause of plant disease from a lack of nutrients – determining the deficient element – is a rather difficult task in agricultural practice. Chemical analysis requires special equipment, chemicals and, just as important, a relatively long time. A faster and more accessible way to determine the cause of the disease is visual diagnostics, but here, without sufficient experience, you can come to the wrong conclusions.
You should look into FMT. You have microbiome damage from antibiotics.
Yes and I know a lady who has all kinds of smarts with microbiome. I found her on Instagram.
please look up mind.mood.microbes. Kristina is her name. free 15 min consult.
best, Kim
I have found that histamine issues are due to cellular dehydration. It could be that the other issues are triggered by the same issue. Without enough fluid the liver cannot process certain elements. Now, whenever I get a histamine reaction, a good glass of water will nip it in the bud.
Unfortunately, water is not always enough to hydrate the cells. In order to do that the fluid needs to be rich in minerals, trace elements & phytonutrients. I was drinking water, but it wasn’t until I started juicing that my cells really started to hydrate. I also found that juicing gradually lessened my SIBO & parasite issues too.
I am convinced that a lack of B vitamin-producing microbes in the gut has a lot to do with contributing to a poor gut environment. My biome, such as it was, was trashed by the plethora of antibiotics I was given as a child & took occasionally in adulthood until I knew better some 20-odd years ago. I have nether taken them nor needed them since. B vitamins are so crucial for digestive, nerve, muscular health & good health in general.
Currently, I have increased my Biotin intake. Biotin seems to be important for keeping potential pathogens like Candida, etc, under control. It also seems to be helping my body be better able to utilise the other B vitamins like Thiamine & B12. I believe it also helps the body detox better, too.
The Root Cause Protocol has been mentioned. It is well worth considering. It helps the body balance copper & iron & creates a much better environment for healing within the body.
Maybe try the root cause protocol (on Facebook)
I feel like I’m reading my own story. The details in mine are slightly different, but the concepts are the same. The solutions cause more problems, the problems cause more problems and I can’t find my way out of it. I have found some things that help quite a bit and would be happy to connect to share and support each other.