The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Did you get sick from SIBO herbs

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by ebethc, Jun 2, 2017.

  1. ebethc

    ebethc Senior Member

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    i took SIBO herbs in May for a few weeks (FC Cidal & Dysbiocide) and last week I started to feel sick, and I've been having a flu like feeling for a solid week. I don't believe that it's a reaction to the herbs, per se, but I'm wondering if this is a die off.. I felt fine for most of the time I was taking the herbs.. last week, I started to feel very depressed, which is not typical.. I felt the same way when I was taking nystatin a long time ago, except the nystatin made me feel even more depressed... today I've solidly settled into flu w severe fatigue, itchy eyes/nose/throat, and more achiness than usual..

    Has anyone experienced this w SIBO treatment?
     
  2. ryan31337

    ryan31337 Senior Member

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    Yup. I felt rather good towards the end of a short Rifaximin course, which I followed immediately with Candibactin AR/BR. Once on those I had an immediate increase in my MCAS-like allergy symptoms, which got progressively worse for 7-10 days. By that time it had really kicked off my POTS to a level not seen in months. Back to being breathless on standing, reactive hypos from probable dumping syndrome etc.

    My doc suggested switching to individually rotated herbs for better tolerance but luckily I hung in there and it passed quite quickly. I'm still getting the allergy reactions & more fatigue but the real hit is over.
     
    Last edited: Jun 3, 2017
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  3. ryan31337

    ryan31337 Senior Member

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    Also, bit of an overshare perhaps but I did pass quite a bit of mucous during this phase, which I took to be a good sign...:zippit:
     
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  4. ebethc

    ebethc Senior Member

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    That's great to hear.. how long were you on Rifaxamin & the candibactans?

    Are you doing a low carb diet, too?

    I know what you mean about the MCAS symptoms.. my sinus problems, tight chest, swollen throat and itchy eyes flared up like crazy..

    I took the candibactans in January with good luck, killing some persistent stomach bug... I also started taking betaine HCL with meals (big help! Why does no doctor tell you this?? Low stomach acid is common in autoimmune illness)

    In May I started taking biotics herbs, Dysbiocide + FC Cidal + allimax (antifungal garlic pills) and had a similar experience to you re symptoms...I ran out of the allimax, but am finishing the other bottles.. altogether, it'll be a six week course, but I took a couple brief breaks.... I stuck it out during an intense period like you, and I'm glad I did... the antifungal made me depressed, and that's the same reaction that I had when I took nystatin years ago....
     
  5. ryan31337

    ryan31337 Senior Member

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    My protocol was:

    Rifaximin 10 days (2x 550mg)

    Followed by 2 months of herbals:
    Candibactin AR 4x daily
    Candibactin BR 6x daily
    Garlic Plus 3x daily
    NAC Enhanced Antioxidant Formula 3x daily
    I assume the NAC Enhanced is for both biofilm disruption and detox (my nutritionist is a fan of NO/ONOO hypothesis).

    Yes, ketogenic low-carb diet for about 8 months now, it was the only thing that brought relief to GI symptoms, having already been very low FODMAP for years before. I was also having quite significant post-prandial symptoms beyond just GI, which we think may have been an issue of POTS related early & late rapid gastric emptying - certainly seems that way based on signs, symptoms and improvement with dietary changes. I expect that dysmotility was a big factor in the development of SIBO.

    I'm glad the Betaine HCL helped. I found myself becoming quite acidic with reflux when starting the Candibactins, its settled down but I still suffer a bit if I'm not careful with portion sizes and staying upright long enough after eating. I appreciate it can happen from both low and high stomach acid, its not something i've investigated too much yet.

    Interesting you mention the depression. Its not something I usually struggle with, apart from acute mood changes from migraine aura. I have had a few periods of feeling a bit down since starting these herbs though.
     
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  6. ebethc

    ebethc Senior Member

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    What were the dosages?

    Did you have SIBO-C? Antifungals (garlic) are supposedly best for that.

    I've heard a little bit about the NO/ONOO hypothesis... what is it, in a nutshell, and how does it relate to NAC?

    Thanks
     
  7. ryan31337

    ryan31337 Senior Member

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    Hi @ebethc,

    There are tons of ingredients in each pill, easier if you look them up online - number of pills per day listed above.

    I alternate between C & D. I don't think that the SIBO is the root cause of this though, I suspect dysmotility comes first from my autonomic dysfunction and the SIBO is just one result of that.

    The nutritionist added the garlic in because my methane levels were borderline and it was debatable whether truly necessary to nuke me with metronidazole. She had experience of methane producing bacteria taking over in other patients after targeting their hydrogen producing bacteria, so it was to safeguard that really. The garlic pills are actually the one that I got on very well with, immediate improvement in my motions and no side effects.

    upload_2017-6-9_23-35-48.png
    This was after about 5 months on keto-diet with massively reduced symptoms. Would've been interesting to see the graph when I was at my worst!

    I'm not very well read on NO/ONOO either, I believe its an oxidative stress/detox pathway related theory.

    To be honest I find my energy is better spent on more tangible issues that can be readily tested & treated with some degree of consensus, stuff like autonomic dysfunction, endocrine & GI issues etc. There are so many theories for the underlying cause, I wouldn't know where to start, nor do I have time or money to spend on them.

    Ryan
     
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  8. ebethc

    ebethc Senior Member

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    @ryan31337

    No, I meant how many pills did you take , e.g. "2 pills, 3x per day"?

    So, fungus cause methane, correct? And garlic is the best antifungal?

    Thanks

    Good theory re autonomic dysfunction as underlying issue...I've read that ppl w immune disease or autoimmune have low stomach acid... but who knows why we have low stomach acid?? I'm like you; I'd rather just treat what's measurable... I really only started getting better when I found effective treatments for stomach problems, and started putting the puzzle together re how one gut problem causes another. Low stomach acid -> low pancreatic function -> low proteolytic enzyme output... I discovered proteolytic enzymes (wobenzym, vascuzyme, bromelain) last fall and that was the first thing that helped my pain, brain fog and sinus problems in any material way. The combo of betaine hcl, SIBO herbs, proteolytic enzymes and DHA has done more for my health than everything else combined! I also take anti- oxidants, and some other things (vitamin c, zinc, quercetin/rutin, sinus rinses w cromolyn/saline, magnesium, active b vitamins)

    Ps when I first took wobenzym last fall, I got a massive sinus headache - ice pick to the forehead! - then it passed and it was all good from there... only one or two bad days... in hindsight, I think the enzymes broke up a lot of biofilm, so the pain was worth it.
     
  9. ryan31337

    ryan31337 Senior Member

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    Candibactin AR 2x pills, 2x pd
    Candibactin BR 2x pills, 3x pd
    Garlic Plus 1x pill, 3x pd
    NAC Enhanced Antioxidant Formula 1x pill, 3x pd

    I don't think candida is the primary target of garlic treatment. There is another microbe (archaea?) that feeds off hydrogen and produces methane, I think that's what we're trying to suppress. Though knocking candida out wouldn't hurt and its the disruption of that + other microbes/parasites that probably gives the horrible die-off experience on herbals. I assume I didn't experience that on Rifaximin because its relatively more targeted, and supposedly only works in the small intestine, whereas herbs will hit the entire tract.

    Glad to hear you've had some success. This is an interesting presentation that sums up what I think is relevant to my situation: http://www.potsuk.org/UserFiles/File/Prof_Q_Aziz_Gut_and_PoTS.pdf

    On the surface my condition fits very well with dumping syndrome aka rapid gastric emptying. I'll probably take myself off to see that guy if I don't get anywhere after the SIBO treatment and a trial of sodium cromoglycate.
     
  10. ljimbo423

    ljimbo423 Senior Member

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    I'm doing my second course of rifaximin rate now, I have another few days to go before I finish. I do feel better, often MUCH better, but was hoping for more relief- but aren't we all!:) From the research I've done on rifaximin, it works as a bacteriostatic not a bacteriacidal (sp?).

    It doesn't kill the bacteria directly, it just stops them from reproducing and therefore lowers there numbers that way. Herbs kill bacteria directly, often by causing a failure of there outer cell membrane. I think it's the LPS in those cell membranes that get into the bloodstream, cause the immune reaction and the die off symptoms.

    Great protocol by the way! How are you fairing symptom wise, from the protocol?
     
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  11. ryan31337

    ryan31337 Senior Member

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    Interesting, thanks @ljimbo423, learn something every day :)

    I'm still all over the place to be honest. I had already greatly reduced the worst & most consistent GI symptoms by switching to LCHF before, these were painful cramps, bloating and horrendous flatulence.

    The first 10 days or so on herbals were really rough and symptoms across the board increasingly flared. Its settled down but I still feel more fatigued, more itchy, more reflux/heartburn & near constant pompholyx eczema outbreaks whilst taking the herbs - basically most of the obvious symptoms I associate with food reactions normally. Bowel motions throughout the course have been a gradual shift from loose to constipated.

    I've actually had a pretty weird experience in the last few days. I noticed subtle changes in my ability to hold & concentrate urine, I'm no longer peeing in the early hours & when I do go now its not always clear as water. These temporary shifts aren't something new, I've had low aldosterone results in the past and assume its related. What also happened this time was some sort of GI shut down too, I stopped getting hungry and had to force myself to eat more than once a day and I became very constipated indeed. Not sure if this was a spell of gastroparesis? What a mess! Intriguingly after about 6 weeks of near constant pompholyx eczema it also completely cleared during this spell.... waiting to see if it reappears with normal movements...
     
    Last edited: Jun 10, 2017
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  12. ljimbo423

    ljimbo423 Senior Member

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    Mine have done the same. I just started taking some cellulose, to increase insoluble fiber, without feeding the bad bugs, like many soluble fibers can.

    I hope that will happen for me as well!
    My urine is usually clear and often, too often.:) I also assumed it was low aldosterone for me too.

    Do you think it was the herbs- (die off) that caused the eczema? I have had eczema around my nose and eyes for years, which is mostly gone now.

    However, when I gone up on the antibiotic herbs I am taking, it flares up, noticeably. I think that has to do with the immune activation from the die off, causing the inflamed skin and flaky skin.

    Hopefully this will all pay off for both of us! My mantra is, either I will get well, or die trying!!:D
     
  13. Basilico

    Basilico Florida

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    My husband did a course of Rifaximin to treat SIBO and it completely wrecked his GI system. After that treatment he developed an extreme sensitivity to almost every food and drink, even stuff like homemade chicken soup that previously he tolerated well. It took a really long time and A LOT of probiotics to undo the damage done by the Rifaximin.

    various gut flora have exert a direct effect on neurotransmitters, and it is now understood that they play a large role in mediating mood, so the depression you are experiencing good very well be that crucial gut flora are getting killed off. When you are done with your treatment, I suggest really spending a lot of time on repopulating your GI system with critical human strains. There are lots of thread on PR about the various probiotics folks have used.
     
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  14. ebethc

    ebethc Senior Member

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    Interesting....

    Does LPS contribute to leaky gut? Is it the LPS that makes you feel sick w leaky gut, and/or in a gut protocol?

    I'm been doing this for the past 5-6 wks:
    Dysbiocide 2 pills, 1-2x pd
    FC Cidal 2 pills, 1-2x pd
    First 2 wks, ~400mg allicillin 1-2x pd

    I've been feeling progressively better; the beginning was very rough... Now, sleeping really deep, and waking up (usually) feeling good, and w clear sinuses and better cognition(!)... but it's early and I only have a few good hours a day, then I feel exhausted, my throat hurts and I have dark circles under my eyes...cautiously optimistic.

    I'm not sure how long to keep up this protocol... I have about 1-2 wks of herbs left... what's the longest that ppl stay on it?
     
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  15. ljimbo423

    ljimbo423 Senior Member

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    LPS can cause or contribute to a leaky gut. When LPS react with the immune system in the intestinal wall, the immune system causes inflammation, weakening the tight junctions between the cells in the gut wall, allowing LPS into the bloodstream. Yes, LPS, because of the immune system reaction they cause when they get into the bloodstream, create the die-off symptoms.

    I think that's a good protocol. I seems to me, the more different herbs we use, the better the results should be. Each herb usually has at least a few active ingredients and hit the bacteria from a different angle, so to speak. There are over a dozen different herbs in your protocol.:)

    It sure sounds like you're moving in the right direction!

    I don't know how long people stay on there protocols. I am going to stay on mine until I feel well. Although I'm most likely going to switch to different herbs and doses. I am absolutely convinced that my cfs started with severe dysbiosis and a leaky gut.

    I don't believe I can get healthy without 100% resolution of my gut problems. If I still don't feel 100% after treating the gut, I'm going to look a more extensive mitochondrial protocol or at heavy metal chelation.

    Congrats on the progress you've made so far!!:thumbsup:
     
  16. ebethc

    ebethc Senior Member

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    @ljimbo423

    How do you tighten junctions in intestinal wall? Zinc & glutamine & collagen?
     
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  17. ebethc

    ebethc Senior Member

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    Thanks- I hadn't heard any stories like your husband's... hope he's better... I've never taken rifaxamin, and your story makes me more inclined to avoid it

    The depression from anti fungals was passing, and it was much worse from nystatin than what I took this time... I think the difference is that I'm taking a variety of herbs now vs nystatin on its own... maybe there's a synergistic effect? It was notable because with nystatin, I toughed it out, then felt no better when it was done! This time is much better, and I have several hours a day where I feel better than I have in years...so we'll see, but cautiously optimistic for now..

    I also noticed that a persistent sore throat got worse then got better...
     
  18. ebethc

    ebethc Senior Member

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    Lol
     
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  19. ljimbo423

    ljimbo423 Senior Member

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    Yes, I think all of those things can help to some degree. Ultimately, the underlying cause needs to be treated. That's why my number one priority is treating the dysbiosis, everything else I do is lower on my list of priorities.

    For some reason in the last 3-4 days, I am feeling very good! I'm not quite sure why. It could be that I am almost finished my second round of Rifaximin. I took one course about 2 months ago, at 400mg, three times a day for 10 days and I am 12 days into my second course, which is 15 days.

    The other thing it could be is that I started to take niacinamide (B-3), to boost my NADPH levels, NADPH is crucial for mito function. I started taking 10-20 mg a few days ago and within 30 minutes I started to feel a lift in energy and more clarity of mind. Whatever is causing me to feel so much better is very welcome and I hope it continues!!:)
     
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  20. Basilico

    Basilico Florida

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    Before he took it, we hadn't heard anything bad about it, either. In fact, I was under the impression that it's actually quite a good treatment for SIBO.

    We later learned that Rifaximin kills off both bad and good E. coli, and his good E. coli was likely really low to begin with. After he did a good course of Mutaflor (E. Coli Nissile 1917) he got MUCH better. It took us awhile to even get a grip on what the problem was and we didn't realize the Rifaximin was actually contributing to the problem.

    I'm glad to hear you're doing better.
     
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