Low Dose Naltrexone (LDN): SIBO treatment and fibromyalgia

[IfIOnly]

My doctor suggested trying this. Do you have experience with this? Any long-term users?

 

My doctor suggested this, erthyromycin, or GingerMax for 3-6 months Small Intestine Bacterial Overgrowth (SIBO) treatment maintenance and wants me to get back with her about it. I think the LDN might be a longer (or lifetime) treatment and for other issues but forgot to ask.

 

Thank you!

Edited September 16, 2016 by ifIonlyhadabrain

[Guest]

I've been on LDN for inflammation and major digestive issues related to an autoimmune issue. I wouldn't suggest starting it until you've dealt with the SIBO, but overall it has been a useful treatment and no side effects that I've noted.

 

It can be done in a series or long term, it just depends.

[IfIOnly]

Thanks, AM. Yes, the treatments mentioned are for after the infection is treated and more for villi health and to prevent reinfection, if I'm remembering my the convo with my doctor right.

Edited September 16, 2016 by ifIonlyhadabrain

[Guest]

My intestines have been leveled, celiac style, but without gluten as the culprit. Honestly the BEST treatment I have found with the most appreciable benefit quickly is L glutamine powder in fairly large doses - anywhere from 5-20 grams. Some celiacs take up to 40 grams but I haven't found those quantities made a bigger difference than half that amount daily in a shake of some kind or straight with water, I ramped up over the course of a week but it's been great and inexpensive. I have t noticed the efficacy decrease when I take it in a powdered shake but some people do say it doesn't work as well.

 

The LDN doesn't hurt but I don't think it made as much of a difference. You can google l glutamine for gut health and get started, and his site has good information as well:

http://goodbyeleakygut.com/l-glutamine-leaky-gut/

 

This is the powder I use, and I've found it half off before which makes it even more economical :)

https://www.pureformulas.com/lglutamine-176-oz-500-grams-by-jarrow-formulas.html?CUSTOMTRACKING=CUSTOMTRACKING&CAWELAID=530005240006110687&CAGPSPN=pla&CAAGID=13900210616&CATCI=pla-61171982068&catargetid=530005240002633636&cadevice=m&gclid=CP2M_pbmlM8CFUiEfgodxaIJhQ

[IfIOnly]

Oh, thanks for the rec.! Lglutamine sounds good. Inexpensive is great too.

[Jean in Newcastle]

I've been on ldn now for 5 months.  It was really hard the first month or so.  I immediately went into a flare and I had gi problems.  But now. . . it has made a  huge difference for me.  I have increased stamina, better thyroid numbers (it can help to heal the thyroid), fewer flares (though I still flare) and less susceptibility to illness. 

[Joules]

I haven't tried it, but I'll be following the thread.  I have celiac and was just diagnosed with SIBO a few weeks ago.  Before trying antibiotics, the doctor has me doing a different treatment for SIBO (and the pain that she thinks was misdiagnosed as fibromyalgia).  It's two medical food products: Visbiome, a probiotic, and Enteragam, an immunoglobulin.  

 

It's hard to give much feedback yet, because I got a horrible case of bronchitis and have been on antibiotic anyway.  The pain and stomach issues are definitely better, but I don't know if that is the result of the antibiotic or the supplements.  I guess I'll know in a few weeks.

 

 

Edited September 16, 2016 by Joules

[Jean in Newcastle]

Oh and I found that the problems with ldn side effects seemed to be triggered by dairy and gluten for me.  Once I cut those two things out, my gut health improved and it started to work on other things.  (I had cut both dairy and gluten out in the past without ldn with absolutely no difference in symptoms so I really think it was the combination of no dairy/gluten with ldn that has made the difference.)  Bottom line:  I'm very pro ldn.  But it isn't a magic pill. 

[IfIOnly]

I've been on ldn now for 5 months.  It was really hard the first month or so.  I immediately went into a flare and I had gi problems.  But now. . . it has made a  huge difference for me.  I have increased stamina, better thyroid numbers (it can help to heal the thyroid), fewer flares (though I still flare) and less susceptibility to illness. 

 

That's wonderful it's helping you so much. :crying:  Those are happy tears! Thank you for sharing and the heads up.

 

I haven't tried it, but I'll be following the thread.  I have celiac and was just diagnosed with SIBO a few weeks ago.  Before trying antibiotics, the doctor has me doing a different treatment for SIBO (and the pain that she thinks was misdiagnosed as fibromyalgia).  It's two medical food products: Visbiome, a probiotic, and Enteragam, an immunoglobulin.  

 

It's hard to give much feedback yet, because I got a horrible case of bronchitis and have been on antibiotic anyway.  The pain and stomach issues are definitely better, but I don't know if that is the result of the antibiotic or the supplements.  I guess I'll know in a few weeks.

 

Oh, please keep me posted. I'm just beginning treatment and would love to compare notes. I'll be starting a SIBO thread soon too.

 

Oh and I found that the problems with ldn side effects seemed to be triggered by dairy and gluten for me.  Once I cut those two things out, my gut health improved and it started to work on other things.  (I had cut both dairy and gluten out in the past without ldn with absolutely no difference in symptoms so I really think it was the combination of no dairy/gluten with ldn that has made the difference.)  Bottom line:  I'm very pro ldn.  But it isn't a magic pill. 

 

Oh, very interesting and good to know. 

[Soror]

My intestines have been leveled, celiac style, but without gluten as the culprit. Honestly the BEST treatment I have found with the most appreciable benefit quickly is L glutamine powder in fairly large doses - anywhere from 5-20 grams. Some celiacs take up to 40 grams but I haven't found those quantities made a bigger difference than half that amount daily in a shake of some kind or straight with water, I ramped up over the course of a week but it's been great and inexpensive. I have t noticed the efficacy decrease when I take it in a powdered shake but some people do say it doesn't work as well.

 

The LDN doesn't hurt but I don't think it made as much of a difference. You can google l glutamine for gut health and get started, and his site has good information as well:

http://goodbyeleakygut.com/l-glutamine-leaky-gut/

 

This is the powder I use, and I've found it half off before which makes it even more economical :)

https://www.pureformulas.com/lglutamine-176-oz-500-grams-by-jarrow-formulas.html?CUSTOMTRACKING=CUSTOMTRACKING&CAWELAID=530005240006110687&CAGPSPN=pla&CAAGID=13900210616&CATCI=pla-61171982068&catargetid=530005240002633636&cadevice=m&gclid=CP2M_pbmlM8CFUiEfgodxaIJhQ

Yes, l- glutamine has good studies backing it up. I need to get some more here. 

 

I've used ldn off and on for a few months now. It can be a bit much, especially with some diseases, I know on the Hashi's boards often people will have to start really low and slow. I've been off awhile due to side effects, but I've been thinking about trying again. First time I took it I couldn't sleep at all, then it was good about helping me sleep but I would feel a bit more groggy during the day. I think I'll cycle it off/on when I do it again.

[Jean in Newcastle]

I have to take it at night or I cannot sleep.

[Guest]

Yeah, LDN is strictly a nighttime drug for me, the same way my thyroid med is strictly a morning-before-food drug. The l glutamine is pretty forgiving on timing and divided doses.

[IfIOnly]

The insomnia side effect is scary for me, especially since things that are supposed to be okay taken at night vs morning, like 5htp, usually keep me up anyhow. I'll cross that bridge when I come to it though. Maybe the SIBO treatment will help with my drug and supplement sensitivity. I'm glad to know about this beforehand, and thanks, sorror, for the tip about starting low and increasing to ideal dose over time.

[Jean in Newcastle]

I had insomnia for a couple of weeks and then it went away.

 

 

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[Guest]

It knocks me out about as well as valarian, so it's not universal. And Jean is right that sometimes a little acclimation time helps.

[IfIOnly]

My doctor thought it would make a difference in my quality of life, so I think I could hang for a couple weeks or so at insomnia, at most. She was very encouraged by its results in her practice.

 

It's great to hear personal experiences with it. Thank you!!

[Jean in Newcastle]

I agreed to a trial of 4 months and I'm glad that I made it for that amount of time.  It really has only been in the last month or so that I've seen results that weren't just neutral.  A very concrete example of what I mean is that for the first time in at least 10 years I was able to vacuum the living, dining, hall and stairs in my house in one go.  And I wasn't in bed for two days afterwards.  For me, that is a huge quality of life improvement. 

[IfIOnly]

Tearing up at your posts, Jean. Very happy for you!

 

Does anyone understand the science behind the med? I'm really curious how it works. I know my doctor mentioned something about autoimmune (and maybe nervous sytem although that could have been specfic to me and not related to the drug) disorders and a quick description but I had trouble following and don't remember now the specifics.

[mominco]

OP,

Have you seen this website?

http://www.lowdosenaltrexone.org/

 

DD is on it her dose is 4.5 mg.My local compounding pharmacy did a seminar on it on Tuesday.

I know a lot of GI dr's are using it for patients with GI issues.

 

My DD the 1st week was not sleeping too well.

Day 1 she took it at 9pm

The 1st day she slept at 4 am,she and her brother finished school work and she aced her math test at 4 am! 

She hugged me later that afternoon and thanked me for homeschooling her.

I spoke to the pharmacist that day who suggested doing it 1st thing in the am and that week was a little off but not like day 1

 

It is a compounded medication so make sure your insurance lets you get it,ours does not so I pay $50/month.

Compared to a lot of other meds this is fairly cheap. 

You will have to experiment a bit to find out what works for you and how it affects any other meds you take.

Hope this info helps you.

 

 

[IfIOnly]

Thanks for the into and link, mominco!

[Soror]

I was a bit distracted when I posted last, I mentioned insomnia because you asked for possible side-effects.

 

The first time I took it I took it at night because it is supposed to help you sleep but it had the opposite effect for me, I was pretty much awake the entire night. After a day between I tried to take it in the morning but then it made super groggy after that I took it at night and it generally helped me sleep. Evidently, some people do end up taking it during the day because it does keep them awake. However, there is debate as to whether or not taking it in the morning is as effective.

 

The other negative I had was a splitting headache. I honestly cannot remember how long that lasted but it was pretty brutal. My girlfriend had the same issue and ended up quitting it due to that. I made it past the headaches. It is supposed to reduce aches and pains but it actually was the opposite for me, no excruciating pain but I had a low-level pain all the time. On the positive side, I do believe it helped my thyroid function but I needed to more closely watch my levels at that time because I started having heart palps and horrible chest pain which went away when I discontinued it. I then tried it again at a reduced dose. She had started me at 2mg but recommended started dose is 1.5 for Hashi's patients but I thought, what the heck I'll try it anyway, that time they gave me 1mg dose in the form of .5 mg pills so I tried just doing the .5 mg. After that I honestly can't remember, I should document more!

 

I started back in May (I went and checked my prescription). I took it about a month at the 2mg dosage before the chest pains and palpitations got so bad that I stopped. I cannot remember how long I took the .5 dosage for, I'd have to count pills. Thinking of this thread I took my .5 mg last night and I can't sleep :) From what I've read Hashimoto's patients can have a harder time starting it. I also think I likely need to go back to monthly thyroid checks, I'll be getting a blood test done next week and I'm anxious to see if there has been any improvement in my antibody levels, which is why I took the LDN in the first place. 

[Jean in Newcastle]

Basically, they think that it is an immunoregulator.  In other words, if your immune system is under performing it will boost it.  If your immune system is over performing, then it will dampen it.  Soror, I had headaches too.  And bad flares at first.  It really is amazing that I persevered!  But the promise of something better when so many things haven't work, kept me on it.  We were monitoring my thyroid levels.  If it had caused problems with that then our plan was to decrease my thyroid meds.  But in my case it did not cause thyroid problems. 

[Jean in Newcastle]

I should say too that this treatment has not had it's ultimate test.  We're coming up to the months where I have gotten super sick for the last five or six years.  Last year I was on antibiotics for 7 months straight.  The year before it was 6 months.  If I can get through this fall and winter without ending up in the ER and/or on long doses of antitiotics, it will be the ultimate test on whether this really does help the immune system. 

[Soror]

I thought of another effect of LDN, weird dreams. I never did have any that were really bad but it is frequently mentioned side-effect. Another thing I noticed was that it decreased my appetite just a hair, I lost a bit of weight on it. 

Basically, they think that it is an immunoregulator.  In other words, if your immune system is under performing it will boost it.  If your immune system is over performing, then it will dampen it.  Soror, I had headaches too.  And bad flares at first.  It really is amazing that I persevered!  But the promise of something better when so many things haven't work, kept me on it.  We were monitoring my thyroid levels.  If it had caused problems with that then our plan was to decrease my thyroid meds.  But in my case it did not cause thyroid problems. 

 

 

I should say too that this treatment has not had it's ultimate test.  We're coming up to the months where I have gotten super sick for the last five or six years.  Last year I was on antibiotics for 7 months straight.  The year before it was 6 months.  If I can get through this fall and winter without ending up in the ER and/or on long doses of antitiotics, it will be the ultimate test on whether this really does help the immune system. 

I really hope that it works well for you Jean, I hope it is the final piece to your puzzle, you've waited quite long enough to be well. 

 

In hindsight, I should have just made an appt to get my thyroid levels checked then but at the time. It was obvious, I take the LDN shortly thereafter my heart hurts, stop the LDN. Chest pain is scary. I think I should have decreased my thyroid meds then but it is scary to decrease meds when you've dealt w/ being hypo so long you don't want to go back there. I did just finally decrease them after being sick my vitals seemed to indicate I was very hyper and I've felt better since lowering them.  However, as I said I'm due to get a blood draw this week and have a consultation, I'm curious to see if my stubborn antibodies have went down and what the rest of my thyroid numbers look like. I'm also retesting my adrenals too. As all of us dealing with this stuff know it isn't ever just one thing that affects us. 

[Jean in Newcastle]

Yes, I have lost a bit of stubborn weight which is another plus for me. I never got really bizarre dreams or anything.

 

I hear you on how complicated it all is. I'm on my phone and don't have the citation, but I think the most favorable study said that it worked for 60% of the participants with fibro. That's a great number but of course it also means that it didn't work for 40%. I also want to stress that while I consider it a success for me, I still definitely have fibro. It's just made it more bearable.

 

 

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