A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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LDN and gut motility

Discussion in 'General ME/CFS Discussion' started by rebar, May 6, 2015.

  1. rebar

    rebar Senior Member

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    LDN may be helping. Constipation had been a serious issue, self diagnosed
    SIBO-C, after serious multiple courses of antibiotics. I Started back on LDN taking it in morning, too many issues at night. Bam, things started working!
    I'm taking 1mg before breakfast as soon as I walk upstairs.
    I had booked an appointment with a gastro. I then started reading up on SIBO, came across
    studies for treating SIBO with LDN. Well I started back on LDN 4 days ago
    and for the last two days...success.
    Am I certain, no, but reasonably confident.
     
    rosie26, JPV, SB_1108 and 5 others like this.
  2. SwanRonson

    SwanRonson Senior Member

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    keep us updated. good luck.
     
  3. rebar

    rebar Senior Member

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    I'm sure it's helping 4 days and counting. As I mentioned I take first thing in the AM. It causes some gut noise and a touch of discomfort. Several hours later bam. Good luck all.
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    What were your issues at night? I could not sleep. I felt like my mind was just on. Could hear every noise. Pain went berserk.
     
  5. rebar

    rebar Senior Member

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    Vivid disturbing dreams.
     
  6. SwanRonson

    SwanRonson Senior Member

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    What is your dosage?
     
  7. rebar

    rebar Senior Member

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    Hi Swan, a little over 2mg.
    I originally wrote 1 but its closer to 2.
     
    Last edited: May 9, 2015
  8. SB_1108

    SB_1108 Senior Member

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    I'm about to start LDN for SIBO and ME/CFS/FM - I start on Wednesday. So its good to hear that this is working for you. Do you feel that the LDN helps with your fatigue/pain or other symptoms @rebar ??
     
  9. rebar

    rebar Senior Member

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    well I can't say never able to stay on it long enough to know, as I mentioned problems for me at night.
    Last week on Mon. was the first time I'd tried it in the morning. If it continues to help with SIBO and nothing else that's enough for me.
     
    aimossy likes this.
  10. SwanRonson

    SwanRonson Senior Member

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    So taking it in the morning has kept the night terrors away? It looks like naltrexone has a HL of 4 hours, so at low doses it probably wouldn't build up in the system over time. Especially since it isn't metabolized by P450, which would be good for me since i'm a fast 450 metabolizer. If you keep having success, I'll probably give it a shot. Pardon me using you as a guinea pig. :)
     
  11. rebar

    rebar Senior Member

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    No negative symptoms, the problem of unsettling dreams shouldn't be an issue considering how it works.
     
  12. SwanRonson

    SwanRonson Senior Member

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    After 2 months, what's the verdict if you don't mind me asking? Is it still working for your constipation?
     
  13. rebar

    rebar Senior Member

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    well, first I apologize for not following through and posting when it stopped working. For close to a week it worked
    beautifully, then nothing. I've sInce done a month on neomycin for SIBO-C. I was prescribed lizness after not regaining
    function, that too worked for about a week. During the course of neomycin I took C. Butyricum, building up to 3 to 4 with breakfast (small 180mg dose) and 2 with dinner. My body "seems" to be adjusting to C.B., and my issue is improving, for now.
     
  14. SwanRonson

    SwanRonson Senior Member

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    Thanks for the report. Are you still taking the LDN at all?
     
  15. rebar

    rebar Senior Member

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    Stopped LDN about a week ago, not for previous problems. My system occasionally collapses into
    chaos, -inflammatory, skin, lymph nodes, digestive, cognitive, pain, etc. I then stop everything.
     
  16. SwanRonson

    SwanRonson Senior Member

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    What dosage were you at? At the recent meeting with Dr. Younger he mentioned that they have slowly crept up their dosage recommendations over the years. He said they've found people doing a lot better on anywhere from 6-9mg. I've never taken it.
     
    JPV likes this.
  17. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    I just ordered some LDN not for SIBO but for it's purported ability to control overactive microglia.
     
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  18. rosie26

    rosie26 Senior Member

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    Same with me. Hope to get a prescription for it next week.
     
  19. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Not sure if this will work where you live but there are numerous places online where you can order it without a prescription.
     
    rosie26 likes this.
  20. rosie26

    rosie26 Senior Member

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    I'm in NZ. I have an appointment with my ME doctor next week and she apparently will prescribe it. Just hope she will for me - she has been pretty good though. I don't think I will have any trouble getting it. Thanks JPV. I hope you get some good results from it when you do try it.
     
    Scarecrow and JPV like this.

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