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Got to the point I am scared to try anything

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by tinacarroll27, Sep 26, 2018.

  1. tinacarroll27

    tinacarroll27 Senior Member

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    Hi all. I recently got tested for SIBO and was positive. So I have been trying to get my gut healed and get rid of SIBO with herbal antibiotics 2 capsules a day of Neem and 1 a day of Golden seal. I was also taking 1 capsule of Biofilm defence on an empty stomach in the morning in case I had a biofilm. I had only taken this protocol for 1 day and I had a massive crash. I woke up the next day with severe pain in my lower back and hips and couldn't get out of bed for the pain.
    My stomach was also severely bloated. I week later I still feel terrible and feel as if I have had a relapse. I have stopped all supplements and am just resting with the hope I will improve. I have got to the point I am scared to try anything in case it makes me worse and then some times I think I should push through but I am to scared to! Very depressing!!!:ill::(:aghhh:
     
  2. kelly8

    kelly8 Senior Member

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    Hi @tinacarroll27 ,
    I think a lot of us have been there. I know at one point after doing an elimination diet to see what I was sensitive to I could only eat 6 things. Everything in my environment was effecting me as well. I should have been living in a bubble...

    But you can do this. I am now in a much better place after working on my gut. Fixing your gut is a long term thing. I am now about 5 years into it and it is getting much easier. When I first started I added things ridiculously slowly because I was so sensitive. Maybe adding small amounts of one of those changes might work for you?

    Then backing off when flaring was really important too. Sometimes I felt like I wasn't getting anywhere. In reality though I was slowly healing. It was very hard and very frustrating, but now I'm just sensitive to gluten, some amounts of soy, and certain oils.

    If I can do it, you can do it too!
    Kelly
     
    CedarHome, bctjr1993, Mary and 3 others like this.
  3. S-VV

    S-VV Senior Member

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    Please, consider halting the use of antimicrobial herbs until you sequence your microbiome. You could further establish a dysbiosis. That was exactly the way I screwed myself over. uBiome is only 100$.
     
    kelly8 likes this.
  4. S-VV

    S-VV Senior Member

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    Rifaximin has a low impact on the microbiome, and may be more indicated for SIBO treatment until you know the concrete makeup of your intestinal flora:

    "Animal models, culture studies and metagenomic analyses have demonstrated an increase in Bifidobacterium, Faecalibacterium prausnitzii and Lactobacillus abundance after rifaximin treatment, probably consequent to the induction of bacterial resistance, with no major change in the overall gut microbiota composition"

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5504364/
     
  5. ukxmrv

    ukxmrv Senior Member

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    What jumps out at me is that none of the things you mention are a proven treatment for SIBO. Not sure where you got the idea that a cocktail of herbal supplements would be effective against SIBO.

    That's not intended as a slight or criticism. I took herbal supplements to try and fight various things over the decades and ended up with a stomach ache and a downturn in health. What I learned for my body is that if the stomach is playing up then anything can make it worse. That includes herbal remedies and we don't have any concrete evidence that they would even cure the problem.

    It may be that there is a more conventional SIBO treatment that would work for you. What did the doctor who ordered the test want to do?
     
  6. tinacarroll27

    tinacarroll27 Senior Member

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    I ordered the test myself, although I have been in contact with DR Myhill and she said to take vitamin C to bowel tolerance but I have tried that and it made me feel worse as well. It's difficult knowing what to do next as my GP won't prescribe anything. So I am left trying to figure it out for myself and I don't know a private doctor who I could go to in the UK who has experience of treating ME or SIBO
     
    ukxmrv likes this.
  7. ljimbo423

    ljimbo423 Senior Member

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    I am having tremendous success treating SIBO/dysbiosis with herbal antibiotics. Functional medicine doctors have been using them to treat SIBO for many years.

    Allison Siebecker from SIBO.com talks about using herbal antibiotics successfully in SIBO patients regularly. The die-off can be horrendous though!

    This study shows that herbal antibiotics were just as effective as Rifaximin in treating SIBO-

     
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  8. tinacarroll27

    tinacarroll27 Senior Member

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    I wonder if that was what happened to me. Maybe I was going too fast and need to go slower to avoid die off. I felt like I had caught the worst flu and had muscle and back pain. I also looked 9 months pregnant.
     
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  9. ljimbo423

    ljimbo423 Senior Member

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    Those are the very same symptoms I get from killing off the bacteria. You might want to try BCAA's at a dose of at least 5-10 grams a day on an empty stomach and to use a much lower dose of herbs.

    BCAA's completely stopped the flu-like flares I was getting from bacterial die-off and also lessened my PEM significantly.

    A low carb diet, I have learned is not optional, unfortunately. The bacteria associated with sibo/dysbiosis THRIVE on carbs. but are not able to process fat and protein very well.

    Without a low carb diet sibo/dysbiosis is almost impossible to get rid of. I think our experience with the die-off is why so many people don't follow through with treating their sibo/dysbiosis.

    I had the same problem for years trying to treat my sibo. Every time I would take any significant amount of herbal antibiotic the bacterial die-off would wipe me out.

    I have had at least a doubling in my energy, my PEM is much less than it was and my quality of life is TREMENDOUSLY better than it was before I started treating my gut!

    I think you are right and you need to take much lower doses of herbs and maybe try the BCAA's to help reduce die-off symptoms. Feel free to PM me anytime. I have A LOT of experience in treating my gut.:)
     
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  10. tinacarroll27

    tinacarroll27 Senior Member

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    Thanks!!:) I will try the BCAA's but I will have to go really really slow with herbal antibiotics as I don't want that level of die off again!
     
    ljimbo423 likes this.
  11. tinacarroll27

    tinacarroll27 Senior Member

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    I have been thinking of getting the test with uBiome for a while now, so I think that might be the next step. I am staying off every thing for now till I feel better. Still feel pretty rough.
     
    S-VV likes this.
  12. S-VV

    S-VV Senior Member

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    uBiome can help a lot. Knowing your microbiome makeup, you will be able to choose the optimal herbs
     
    lafarfelue likes this.
  13. S-VV

    S-VV Senior Member

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    I've used @ljimbo423s BCAAs with some L-glutathione powder. Its very effective for die offs
     
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  14. tinacarroll27

    tinacarroll27 Senior Member

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    Thanks I will try that.
    Yes I think you are right.
     
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  15. keenly

    keenly Senior Member

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    Symbioflor2 is an excellent probiotic

    cfremission site is a must read.
     
  16. CFSTheBear

    CFSTheBear Senior Member

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    Hi - just dropping in here due to the mentions of ubiome - what should I look out for in a ubiome test result? Most of it just seems like nice to know information rather than actually actionable.
     
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  17. S-VV

    S-VV Senior Member

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    cfsremission.com

    Upload your data and get recommendations for improving your microbiome. As @keenly said, it's a must read
     
    keenly likes this.
  18. jason30

    jason30 Senior Member

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    I wonder which Ubiome test you did?
    Does SmartGut applies for this?
     
  19. CFSTheBear

    CFSTheBear Senior Member

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    Interesting, thank you. I don’t tolerate any probiotics (mcas) so it’d be interesting to see what suggestions would be made.
     
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  20. S-VV

    S-VV Senior Member

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    Most probiotics don't take residency in the gut, and their main benefit is the natural antibiotics they produce against pathogenic/overgrowth species. The basic way to induce a microbiome shift is via a specific diet, so hopefully you can tolerate some dietary suggestions made by the software.
     
    keenly likes this.

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