Fascinating thread. Just getting familiar with this.
Paul
Low Dose Naltrexone LDN
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Hi Paul,
I copied this from from a post I wrote in a response to the old thread at the link below:
https://www.perskyfarms.com/phpBB2/view ... n&start=15
Tex
I copied this from from a post I wrote in a response to the old thread at the link below:
Tex wrote:I've never had any prescription compounded, but one place that comes to mind is Skip's Pharmacy in Boca Raton, Florida. It's tough to find a place to get LDN compounded, but Skip's pharmacy is known nation-wide as a great place to get LDN. They apparently provide excellent service and fair prices.
https://www.perskyfarms.com/phpBB2/view ... n&start=15
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well, I tried LDN in 2016 for a few months also. Didn’t notice any improvement with my diarrhea at all. My PCPs office was fine giving me a prescription for it and I found a compounding pharmacy via Google that was near my home. Just look around on the internet some..
Laine
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
No other autoimmune issues I’m aware of. Apparently my issue is bile acid malabsorption ....which was not on my radar at all. I tried the LDN before I ended up trying cholestyramine ...which I’d seen mentioned on this board . It took me a few years to get the dosage of the cholestyramine right.
Laine
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
I take 8 packets a day 
...4 packets about an hour after my morning meal and 4 packets about 830pm
It became apparent I needed it after stopping twice. I guess I just couldn’t believe I needed that much given my size...and the fact that everyone else needs like “half a packet every three days or I’m constipated”
I just took a leap of faith and went from 6 to 8..6 was making my life better, but still not controlled enough to not be pooping in a bedpan in my car going to work. Ya, TMI...but that was a fairly common thing. Imodium at huge dosages didn’t help me any longer and neither did Budesonide either time I tried it.
Laine
...4 packets about an hour after my morning meal and 4 packets about 830pmIt became apparent I needed it after stopping twice. I guess I just couldn’t believe I needed that much given my size...and the fact that everyone else needs like “half a packet every three days or I’m constipated”
I just took a leap of faith and went from 6 to 8..6 was making my life better, but still not controlled enough to not be pooping in a bedpan in my car going to work. Ya, TMI...but that was a fairly common thing. Imodium at huge dosages didn’t help me any longer and neither did Budesonide either time I tried it.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Laine,
You know, thinking about this, cholestyramine might work for most people (or even everyone), if they took enough of it. Cholestyramine sequesters more than just bile. It also takes a lot of toxins out of circulation. But most people give up on it if a couple of packs or so per day don't work. Or they use the wrong brand, or say that they don't like the taste (apparently that's more important to them than stopping the diarrhea). Or they feel that they can't afford to lose the nutrients, despite the fact that they're losing them anyway, because of the diarrhea. Anyway, you're the only person I know of who had the chutzpah to stick with it long enough to find a dose that actually worked, despite the fact that it took a heck of a lot bigger dose than normal. Kudos to you.
Tex
You know, thinking about this, cholestyramine might work for most people (or even everyone), if they took enough of it. Cholestyramine sequesters more than just bile. It also takes a lot of toxins out of circulation. But most people give up on it if a couple of packs or so per day don't work. Or they use the wrong brand, or say that they don't like the taste (apparently that's more important to them than stopping the diarrhea). Or they feel that they can't afford to lose the nutrients, despite the fact that they're losing them anyway, because of the diarrhea. Anyway, you're the only person I know of who had the chutzpah to stick with it long enough to find a dose that actually worked, despite the fact that it took a heck of a lot bigger dose than normal. Kudos to you.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Honestly Tex, I had nothing to lose because nothing else seemed to work. There were many times I thought this might actually kill me. It wasn’t just a nuisance. Lots of tears shed and prayers said over this. This is why I am an advocate for this stuff for the folks who aren’t helped by steroids or diet. I know what it feels like to be at rock bottom with no hope.
I tried cutting down from 8 to 7 and then 6 packets a few months ago...that didn’t go well. Back to diarrhea. Took me a solid month to get back on track. It’s possible I only need 7 packets...but I won’t try that again for awhile!
I will say again that the final piece of the puzzle for me was Betaine HCl and digestive enzymes. I still use them, but not much at all...
I remember Polly posting about studies showing a genetic issue with bile acid malabsorption . I guarantee you that my moms Swedish side has that mutation. Diarrhea is/was an issue with them. After my success with cholestyramine , I convinced my mom to try it ..and she’s much better (“spastic colon” with diarrhea her whole life...was getting worse as she got older). Her issue is timing it with medications.
I was off Thursday and Friday this week and finally got out riding my bike along the canals here in Phoenix . 20 miles on Thursday and 15 miles Friday ....and no anxiety, sketchiness or scanning the surroundings for “cover” to poop behind! I can tell you stories that would horrify even this group!
If drinking gritty “Tang” is something you can’t do...then sorry buttercup , this isn’t for you ! I would eat purple dog poop everyday to have a “normal” life.
And I thank you and everyone on this site Tex. People want numbers, they want a recipe. I was given the basic info on the site and I had to run with it and experiment on myself. We are all unique individuals..one size does not fit all. Some things might help you, other things not so much. Doctors were pretty worthless on my journey...my favorite internal med Dr at my hospital in Colorado tried his best to help me!
Anyhoo...I take fat soluble vitamins and magnesium . That’s all. When I’ve tried to cut the mag in the past I start getting low level anxious again and my sleep goes out the window . And I sleep like THE DEAD! Woo hooo!
Happy Halloween
Laine
I tried cutting down from 8 to 7 and then 6 packets a few months ago...that didn’t go well. Back to diarrhea. Took me a solid month to get back on track. It’s possible I only need 7 packets...but I won’t try that again for awhile!
I will say again that the final piece of the puzzle for me was Betaine HCl and digestive enzymes. I still use them, but not much at all...
I remember Polly posting about studies showing a genetic issue with bile acid malabsorption . I guarantee you that my moms Swedish side has that mutation. Diarrhea is/was an issue with them. After my success with cholestyramine , I convinced my mom to try it ..and she’s much better (“spastic colon” with diarrhea her whole life...was getting worse as she got older). Her issue is timing it with medications.
I was off Thursday and Friday this week and finally got out riding my bike along the canals here in Phoenix . 20 miles on Thursday and 15 miles Friday ....and no anxiety, sketchiness or scanning the surroundings for “cover” to poop behind! I can tell you stories that would horrify even this group!
If drinking gritty “Tang” is something you can’t do...then sorry buttercup , this isn’t for you ! I would eat purple dog poop everyday to have a “normal” life.
And I thank you and everyone on this site Tex. People want numbers, they want a recipe. I was given the basic info on the site and I had to run with it and experiment on myself. We are all unique individuals..one size does not fit all. Some things might help you, other things not so much. Doctors were pretty worthless on my journey...my favorite internal med Dr at my hospital in Colorado tried his best to help me!
Anyhoo...I take fat soluble vitamins and magnesium . That’s all. When I’ve tried to cut the mag in the past I start getting low level anxious again and my sleep goes out the window . And I sleep like THE DEAD! Woo hooo!
Happy Halloween
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Great post, Laine.
You mention Betaine and digestive enzymes. These, along with LDN, are new to me.
Regarding your dosage of cholestyramine, I'm guessing that a packet is equivalent to one scoop from the loose powder? I think my prescription is officially 2 scoops a day at different times. I've been experimenting with just once a day as I have other meds I need to take at various points during the day and I want to avoid absorption issues. I'm interested in what you say since I have a slight sense that cholestyramine can help me, has made a difference, but not to a consistent degree--which, of course, might reflect that I have been using it somewhat erratically and at a relative low dose (at least in comparison with you).
So, as I await my GI's verdict on LDN, I'll up my dose, keeping it to once a day, but maybe trying 3-4 scoops.
Some questions:
--my prescription of cholestyramine is limited to one tin a month--how on earth do you manage to get such a large prescription from your GI?
--I remember asking my GI if there were "travel packs" of cholestyramine available (I travel to Europe and find the tins pretty limiting in terms of portability) and now I wonder why she didn't mention that it is also available in packet form. Weird. Maybe Kaiser doesn't like prescribing the packets.
--A very quick google search reveals that Bile Sequestrants are also available in pill form . . . would pills work for our needs? Is cholestyramine powder the only bile sequestrant that works for MC?
Cheers
Paul
You mention Betaine and digestive enzymes. These, along with LDN, are new to me.
Regarding your dosage of cholestyramine, I'm guessing that a packet is equivalent to one scoop from the loose powder? I think my prescription is officially 2 scoops a day at different times. I've been experimenting with just once a day as I have other meds I need to take at various points during the day and I want to avoid absorption issues. I'm interested in what you say since I have a slight sense that cholestyramine can help me, has made a difference, but not to a consistent degree--which, of course, might reflect that I have been using it somewhat erratically and at a relative low dose (at least in comparison with you).
So, as I await my GI's verdict on LDN, I'll up my dose, keeping it to once a day, but maybe trying 3-4 scoops.
Some questions:
--my prescription of cholestyramine is limited to one tin a month--how on earth do you manage to get such a large prescription from your GI?
--I remember asking my GI if there were "travel packs" of cholestyramine available (I travel to Europe and find the tins pretty limiting in terms of portability) and now I wonder why she didn't mention that it is also available in packet form. Weird. Maybe Kaiser doesn't like prescribing the packets.
--A very quick google search reveals that Bile Sequestrants are also available in pill form . . . would pills work for our needs? Is cholestyramine powder the only bile sequestrant that works for MC?
Cheers
Paul
Paul,
If you look at past success stories with cholestyramine you'll see that most people have the best luck with a specific brand and type, not just any old cholestyramine that the doctor prescribes, or the pharmacist happens to grab. They use Sandoz, and never a Lite version. The only difference between bulk and packets (or sachets) is probably the convenience when traveling. Some brands and types don't work as well, and some don't work at all. At least, that's my impression, if I've been understanding past posts correctly.
Tex
If you look at past success stories with cholestyramine you'll see that most people have the best luck with a specific brand and type, not just any old cholestyramine that the doctor prescribes, or the pharmacist happens to grab. They use Sandoz, and never a Lite version. The only difference between bulk and packets (or sachets) is probably the convenience when traveling. Some brands and types don't work as well, and some don't work at all. At least, that's my impression, if I've been understanding past posts correctly.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: Low Dose Naltrexone LDN
Hey Paul...
Like Tex said, apparently all bile acid binders are not the same. I need Sandoz brand, which IS A GENERIC for the branded QUESTRAN. I have no GI doc at this time...my PCP is fine with prescribing me that dosage since it’s not morphine! And yes, a pill would be easier to deal with..and I think Welchol is now available as a generic...but I’m widowed, need my job, and thus I can’t experiment on myself right now since I have something that works!
I’ve done the cans also. Cans are easier to fiddle around with dosage wise. Packets are easy to travel with..but I carried on enough for like 5 days a few months ago flying out of Phoenix...and it took like 5 TSA agents 5 minutes to decide that it was an ok thing . Again, pills would be easier! I’m fairly sure a scoop equals a packet..
I’m not so sure about the once daily dosing you’re proposing. In my simple little mind, your body releases bile in response to food. So ideally you’d be taking it sometime after all your meals. I do well taking it like an hour after breakfast and up to a couple hours after dinner. I work full time, so this works for me. Taking it just once a day in my mind would be letting me have too much exposure to bile acid...which would irritate my colon, correct? Unless you just ate one meal a day...
I only take the fat soluble vitamins (mag lotion), so I typically take them when I wake up..and slug down my cholestyramine 2 hours later when I pull into work. I know my mom has to be a little more creative with her medication scheduling .
I really think folks need to understand that this stuff doesn’t solve your problems overnight. If you are crazy inflamed like I apparently was , it will take awhile for things to get better. And change can be subtle initially. But you HAVE TO BE CONSISTENT. This is not some treatment that you can try willy nilly or half assed! I was all in...because everything else wasn’t helping . As I tried to point out in another post...if you pour a quart of motor oil on your driveway..don’t say the cat litter doesn’t work to absorb it if you are only using a tablespoon of cat litter! And...if you keep pouring oil on it EVERY SINGLE DAY , you will need to soak it up with the right amount of cat litter EVERY SINGLE DAY!
The digestive enzymes and Betaine HCl were also mentioned here. Betaine HCl...stomach acid basically. I guess I was so inflamed I wasn’t making enough of it... so I did further research and experimentation on myself. I ended up taking 5 of the 648mg capsules with protein heavy meals. And almost all my meals were protein heavy! This was the final piece of the puzzle...gurgling stopped. I slowly cut down over a few years. Now I just take one capsule with protein meals...but it’s no biggie if I miss it.
Ok, that’s enough for now! I worked all weekend and am off today so I think I will hit another canal on my bike!
Laine
Like Tex said, apparently all bile acid binders are not the same. I need Sandoz brand, which IS A GENERIC for the branded QUESTRAN. I have no GI doc at this time...my PCP is fine with prescribing me that dosage since it’s not morphine! And yes, a pill would be easier to deal with..and I think Welchol is now available as a generic...but I’m widowed, need my job, and thus I can’t experiment on myself right now since I have something that works!
I’ve done the cans also. Cans are easier to fiddle around with dosage wise. Packets are easy to travel with..but I carried on enough for like 5 days a few months ago flying out of Phoenix...and it took like 5 TSA agents 5 minutes to decide that it was an ok thing
. Again, pills would be easier! I’m fairly sure a scoop equals a packet..I’m not so sure about the once daily dosing you’re proposing. In my simple little mind, your body releases bile in response to food. So ideally you’d be taking it sometime after all your meals. I do well taking it like an hour after breakfast and up to a couple hours after dinner. I work full time, so this works for me. Taking it just once a day in my mind would be letting me have too much exposure to bile acid...which would irritate my colon, correct? Unless you just ate one meal a day...
I only take the fat soluble vitamins (mag lotion), so I typically take them when I wake up..and slug down my cholestyramine 2 hours later when I pull into work. I know my mom has to be a little more creative with her medication scheduling .
I really think folks need to understand that this stuff doesn’t solve your problems overnight. If you are crazy inflamed like I apparently was , it will take awhile for things to get better. And change can be subtle initially. But you HAVE TO BE CONSISTENT. This is not some treatment that you can try willy nilly or half assed! I was all in...because everything else wasn’t helping . As I tried to point out in another post...if you pour a quart of motor oil on your driveway..don’t say the cat litter doesn’t work to absorb it if you are only using a tablespoon of cat litter! And...if you keep pouring oil on it EVERY SINGLE DAY , you will need to soak it up with the right amount of cat litter EVERY SINGLE DAY!
The digestive enzymes and Betaine HCl were also mentioned here. Betaine HCl...stomach acid basically. I guess I was so inflamed I wasn’t making enough of it... so I did further research and experimentation on myself. I ended up taking 5 of the 648mg capsules with protein heavy meals. And almost all my meals were protein heavy! This was the final piece of the puzzle...gurgling stopped. I slowly cut down over a few years. Now I just take one capsule with protein meals...but it’s no biggie if I miss it.
Ok, that’s enough for now! I worked all weekend and am off today so I think I will hit another canal on my bike!
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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kariswalstad
- Little Blue Penguin
- Posts: 47
- Joined: Wed Oct 02, 2019 10:15 pm
- Location: Minnesota
Re: Low Dose Naltrexone LDN
Hi all! I recently started both LDN and cholestyramine and both have helped, I'm happy to say. I'd used cholestyramine years ago when I was first diagnosed and didn't have adverse effects, and honestly can't remember why I stopped. At any rate, a couple months ago I went to a functional med doc because I still wasn't achieving remission a full year after changing my diet and about 6 months of budesonide. Turns out I have mold toxicity also, and we just remediated and fixed a crack in our foundation. Stress has been through the roof and yet I am improving! I also added far infrared sauna (LOVE this) and some other supplements, some I tolerate ok and some I quit quickly. I've been able to decrease my antidepressants steadily, as well, and I'm not on the edge of tears all the time. Thanks to this board, nearly everything this new doc prescribed was familiar to me and felt safe to try. I got off the budesonide within a month and after working my way up to 2 packets of cholestyramine a day, I had some constipation within a week and have decreased back to 1 packet for now. It feels amazing to have such positive progress!
I want to thank Tex and all of you who participate and share your invaluable experience. The diet change was an absolute life-changer and I'm so grateful. Also for the comfort and reassurance that healing takes a long-ass time and I'm on the right track. For the most part, the fatigue, pain, and brain fog are the last to go, and all have improved significantly. Without a doubt, the LDN and cholestyramine have boosted my energy! I knew I was fatigued, but even I didn't know just how much. For instance, I couldn't imagine wasting the energy on styling my hair (even on a good day). Now it is laughable that it would deplete energy to spend that 10 minutes. I am also getting better at self-care in general. Not judging myself so harshly if I'm lying in bed at 10 am like I am now. Getting better is my full-time job and I was the only one criticizing that. Retraining my brain is a lifelong process but the results are so, so good! Sending you all sincere gratitude. xo
I want to thank Tex and all of you who participate and share your invaluable experience. The diet change was an absolute life-changer and I'm so grateful. Also for the comfort and reassurance that healing takes a long-ass time and I'm on the right track. For the most part, the fatigue, pain, and brain fog are the last to go, and all have improved significantly. Without a doubt, the LDN and cholestyramine have boosted my energy! I knew I was fatigued, but even I didn't know just how much. For instance, I couldn't imagine wasting the energy on styling my hair (even on a good day). Now it is laughable that it would deplete energy to spend that 10 minutes. I am also getting better at self-care in general. Not judging myself so harshly if I'm lying in bed at 10 am like I am now. Getting better is my full-time job and I was the only one criticizing that. Retraining my brain is a lifelong process but the results are so, so good! Sending you all sincere gratitude. xo
Karis
There is a voice that doesn't use words. Listen. --Rumi
There is a voice that doesn't use words. Listen. --Rumi