Severe Gut Dysbiosis

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I've been dealing with a leaky gut and gut dysbiosis basically my whole life. I have not had a stool sample test done or a breathe test for SIBO yet. I know my issues are an overgrowth of bad bacteria. I look 3 months pregnant after one plain hamburger. I have a histamine intolerance as well. I'm currently taking Dysbiocide, FC-Cidal and A.D.P. from biotics research. I've been taking these supplements for about a week. I'm taking a few days off due to constipation and bad bowel movements caused by those supplements.

I also currently take Microbiome Labs Mega IgG2000, Microbiome Labs RestorFlora, Seeking Health Histamine Blocker and l-glutamine by Thorne. I've taking some digestive enzymes before and they help some as well. I've been eating a carnivore'ish diet for a year. I eat mainly beef and some white rice. I drink plenty of water but I do drink black coffee for energy.

I visit these sites for information often: https://mybiohack.com/ and https://selfhack.com/

I follow Judy Cho who is a NTP.

I need some help with healing my histamine intolerance and fixing my gut dysbiosis. Any helpful ideas and supplement advice is welcome. I'd love to hear anyone's experience with gut dysbiosis and histamine intolerance.
 

katabasis

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I would be very careful messing around with herbal antibiotics like Dysbiocide etc. If you have dysbiosis, you may already be more susceptible than most to get a C. Diff infection, and antibiotic use is the other major risk factor. I got recurrent C. Diff after using Xifaxan for IBS/dysbiosis, and it was an absolutely miserable few months. I only got past it by getting on an open label clinical trial for FMT - were it not for that I could have easily ended up with a colectomy, because by the end vancomycin was doing absolutely nothing for it.

This isn't to scare you off totally from that type of thing - but in my opinion, you really should be doing more groundwork to confirm the cause of your symptoms. You mention that digestive enzymes help your symptoms, and something like exocrine pancreatic insufficiency (for instance) may very well cause severe bloating that is partly alleviated by enzymes - and this, without having dysbiosis as an underlying factor. At the very least the breath test is a 'must-have' to help you figure out what's going on.

I'd even go so far as to say that you should get your microbiome sequenced (through Thryve or a similiar company) to keep an eye on what those antibiotics are doing, as well as taking a more broad spectrum probiotic to compensate. I'd also recommend InnovixLab's 'Mood Support' probiotic for its putative endocrine effects - see my thread about it here. I think the influence of endocrine factors on gut flora composition is under-appreciated, and may be especially relevant in the context of ME/CFS.

Another alternative explanation to SIBO would be SIFO, in which fungus is causing the dysbiosis in stead of bacteria. The distinction between the two can be hard to diagnose, but I've read SIFO is more common than people assume. Not to mention that a lot of the treatments for SIFO are relatively safer due to the fact that you can target fungus specifically and not mess up whatever good bacteria you want to keep around. One great supplement for SIFO that may even help SIBO as well is caprylic acid, which is antifungal and also has anti-biofilm effects.

For histamine intolerance, I think diamine oxidase (DAO) supplements can be helpful for some people. You should also look into the 'mast cell activation syndrome' spectrum of conditions; a lot of them present with GI symptoms that would normally be labeled IBS. A lot of those conditions can be effectively managed with mast cell stabilizers; there are OTCs like quercetin, as well as pharmaceuticals like ketotifen or cromolyn.
 

hapl808

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I only got past it by getting on an open label clinical trial for FMT - were it not for that I could have easily ended up with a colectomy, because by the end vancomycin was doing absolutely nothing for it.
Did FMT affect your CFS symptoms at all?
 

Learner1

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@Tomorrow I think that @katabasis gave you some excellent advice. Things I'd add to this information would be:
  1. If youve spent time on antibiotics, I would thoroughly investigate oxalates. Either the Great Plains OAT test or Genova Diagnostics Metabolomix+ test are good, plus they give you a lot of other information that might be helpful if you suspect gut malabsorption, which is likely, given what you've said. If you do find you have an oxalate problem which could definitely be contributing to your symptoms, you can find the oxalate thread I started that describe so what to do and resources.
  2. Do you have food allergies? Even if you don't suspect them, they can develop over time and people with leaky gut. Removing allergens from your diet would be helpful.
  3. Learning what's in your gut and how to modify your microbiome might be helpful. Viome tests your microbiome and then gives you suggestions of what to take to improve the quality and diversity of your microbiome. Other approaches would be to take the GI Map test or GI Effects and deal with any problems they turn up. It's a little bit of an iterative process where if you did one of these tests, then followed up with Viome, it might be helpful.
  4. If your microbiome is really past recovery, I would seriously look into getting an FMT. Much easier in the US if you happen to have a C diff infection, It's the only FDA approved indication, or look up more offbeat ways of getting one, but definitely do your research before considering this approach, because I have heard amazingly good stories and some bad ones, I think it depends on the quality of the donor's material and whether it's compatible with your body.
 

katabasis

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Did FMT affect your CFS symptoms at all?
It certainly didn't help my ME/CFS. Possibly even made it worse, though I think it's more likely that any worsening was the after-effects of spending weeks in the hospital and malnutrition.

FMTs are clearly extremely effective at treating C. Diff. But plenty of anecdotal reports show they are not consistently effective for ME/CFS, even when dysbiosis appears to play a significant role. Citizen scientist Maximilian Kohler has a lot of interesting things to say on the subject - he's a big proponent of FMTs but points out how inconsistent they are for non-C. Diff-related treatments. It seems as though a tiny fraction of donors have some 'x-factor' in terms of efficacy for, say, ME/CFS.
 

hapl808

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Very interesting. Yeah, it's a shame there's not significant research and urgency on FMT as it seems like it could have miraculous effects on a range of illnesses beyond C Diff. But since we really don't understand the donor issues, it's a crapshoot, pun intended. I just wish instead of throwing up their hands and limiting uses, the NIH and others encouraged significant research in the area.
 
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I would be very careful messing around with herbal antibiotics like Dysbiocide etc. If you have dysbiosis, you may already be more susceptible than most to get a C. Diff infection, and antibiotic use is the other major risk factor. I got recurrent C. Diff after using Xifaxan for IBS/dysbiosis, and it was an absolutely miserable few months. I only got past it by getting on an open label clinical trial for FMT - were it not for that I could have easily ended up with a colectomy, because by the end vancomycin was doing absolutely nothing for it.

This isn't to scare you off totally from that type of thing - but in my opinion, you really should be doing more groundwork to confirm the cause of your symptoms. You mention that digestive enzymes help your symptoms, and something like exocrine pancreatic insufficiency (for instance) may very well cause severe bloating that is partly alleviated by enzymes - and this, without having dysbiosis as an underlying factor. At the very least the breath test is a 'must-have' to help you figure out what's going on.

I'd even go so far as to say that you should get your microbiome sequenced (through Thryve or a similiar company) to keep an eye on what those antibiotics are doing, as well as taking a more broad spectrum probiotic to compensate. I'd also recommend InnovixLab's 'Mood Support' probiotic for its putative endocrine effects - see my thread about it here. I think the influence of endocrine factors on gut flora composition is under-appreciated, and may be especially relevant in the context of ME/CFS.

Another alternative explanation to SIBO would be SIFO, in which fungus is causing the dysbiosis in stead of bacteria. The distinction between the two can be hard to diagnose, but I've read SIFO is more common than people assume. Not to mention that a lot of the treatments for SIFO are relatively safer due to the fact that you can target fungus specifically and not mess up whatever good bacteria you want to keep around. One great supplement for SIFO that may even help SIBO as well is caprylic acid, which is antifungal and also has anti-biofilm effects.

For histamine intolerance, I think diamine oxidase (DAO) supplements can be helpful for some people. You should also look into the 'mast cell activation syndrome' spectrum of conditions; a lot of them present with GI symptoms that would normally be labeled IBS. A lot of those conditions can be effectively managed with mast cell stabilizers; there are OTCs like quercetin, as well as pharmaceuticals like ketotifen or cromolyn.
Thank you for the reply. I am going to get a stool culture test done. A few months ago my Doctor gave me a stool test kit but I didn't complete it, due to reading that if it does come back positive for a bacterial infection that there isn't much that my Dr will do. I feel foolish that I haven't followed through with this test.

I should have the test results back next week. UC Health in Colorado is very fast with test results. I have purchased the mood probiotics and am excited to try them, I'll post my feedback on them soon.

I do take quercetin and I take l-theanine as well, I forgot to mention this. I also recently started taking sodium butyrate.

I've been wanting to get a OATS tests done and I feel like I would benefit a lot from this information.

Out of these 2 tests, Great Plains OAT test or Genova Diagnostics Metabolomix+, does one provide more useful information?

I'm very interested in my gut microbiome, I will look into Viome and Thryve. Does anyone have any experience with one of these companies?

Thank you all very much
 
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@Tomorrow I think that @katabasis gave you some excellent advice. Things I'd add to this information would be:
  1. If youve spent time on antibiotics, I would thoroughly investigate oxalates. Either the Great Plains OAT test or Genova Diagnostics Metabolomix+ test are good, plus they give you a lot of other information that might be helpful if you suspect gut malabsorption, which is likely, given what you've said. If you do find you have an oxalate problem which could definitely be contributing to your symptoms, you can find the oxalate thread I started that describe so what to do and resources.
  2. Do you have food allergies? Even if you don't suspect them, they can develop over time and people with leaky gut. Removing allergens from your diet would be helpful.
  3. Learning what's in your gut and how to modify your microbiome might be helpful. Viome tests your microbiome and then gives you suggestions of what to take to improve the quality and diversity of your microbiome. Other approaches would be to take the GI Map test or GI Effects and deal with any problems they turn up. It's a little bit of an iterative process where if you did one of these tests, then followed up with Viome, it might be helpful.
  4. If your microbiome is really past recovery, I would seriously look into getting an FMT. Much easier in the US if you happen to have a C diff infection, It's the only FDA approved indication, or look up more offbeat ways of getting one, but definitely do your research before considering this approach, because I have heard amazingly good stories and some bad ones, I think it depends on the quality of the donor's material and whether it's compatible with your body.
I had a food allergy test done and it showed a mild reactivity to egg whites and nothing else. I started eating the egg yolks, but after a couple of weeks I was inflamed. My knees felt like new when I stopped eating the egg yolks. I have taking antibiotics but not very often. I used eat almonds a lot, it is possible that I have an oxalate issue, I have also been a big fan of sweet potatoes as well. Thank you for the gut test suggestions, I know I need this. I'm looking into which test I should do and how much this will cost me.
 
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I got the test results for my stool sample. It showed negative for shigatoxin 1 and 2, No enteric pathogens isolated (Salmonella, Shigella, Campylobacter or E.coli O157) and Absence of normal fecal flora.

I am very interested in the absence of normal fecal flora. I need to learn about this and I plan on doing a GI Map from Diagnostic Solutions.

@katabasis Thank you for the caprylic acid and probiotics suggestions. The caprylic acid is making a major difference. I feel like it is killing off the bad bacteria.