Hi all. I am new and would like to tell you my story. I was dx w/microscopic colitis in Jan. 1999. I have not had one day since then without daily diarrhea 4-8Xday. Explosive, with no warning diarrhea. Couldn't make it to a toilet 3 feet away diarrhea. All over clothes, floors, walls diarrhea. I have tried everything. Drugs, herbs, diet. It didn't matter what I took or how I ate. Nothing made one bit of difference. I learned to eat one meal a day--dinner, after work, so the times of diarrhea were confined to evening, night and morning before work. My life was a nightmare for the last 9 1/2 yrs.
I also have autoimmune Hashimoto's thyroiditis. And I have suffered from treatment-resistant depression for the last 3 yrs. Had to quit work due to the depression. And to add insult to injury, I was diagnosed with Multiple Sclerosis in Sept. 07. My life went from a nightmare to being just plain hell.
I watched my sister die from MS and knew the regular drugs don't work. I was determined to find something alternative. In March 08, after much research online, I started on a compounded drug called Low Dose Naltrexone. I think the LDN capsules have been helping to stop the progression of the MS. But I was also hoping that maybe the LDN would help the colitis. It didn't. I was very disappointed and questioned whether the LDN was really helping the MS if it wasn't also helping the colitis.
My diarrhea was very bad. No form, just brown mucus (sorry!), but also alot of undigested foods, especially if I ate vegetables or nuts. One day a month ago I noticed a whole vitamin B tablet had passed through. I'm asking myself why I bother taking vitamins if they are not even being absorbed.
But the thought occurred to me: if I'm not digesting vitamins, maybe I'm not absorbing my LDN capsule properly. So at the beginning of October, I started opening the LDN capsule and shaking the contents out on my tongue, washing it down with water.
Now here is why I am posting this message. Within 2 wks of starting to open the capsules and taking the powder directly, my bowel movements started to change. Slowly the number of times I had to go started decreasing. I started being able to sleep the whole night without having to get up my normal
2 - 3 times. Then my BM's started being less watery and became more like baby poop. I started being able to actually make it to the toilet on time. During the last week or ten days or so, my couple of times on the toilet after dinner went away. Form has firmed up a little more.
The last 3 days--roll the drums--I have had JUST ONE BM A DAY!! In the morning, it wakes me up, but I make it to the toilet and if it is not totally formed, it is very close to being so.
I did not want to jinx it by telling anybody, but I couldn't wait in case this might help even one other person suffering from this colitis. If this keeps up this way, it will BE A MIRACLE. After 3,585 straight days of diarrhea, I am beginning, just beginning, to feel almost normal.
I will continue my gluten-free, dairy-free diet. Nuts are still problematic. I will continue my anti-inflammatory herbs (turmeric, boswellia, fish oils, Vitamin D). This is all good for the MS as well. But I can tell you for a fact it is the LDN powder that has made the difference.
I urge everyone to check out this drug. There are Yahoo groups dedicated to LDN users. Go to LowDoseNaltrexone.org. Please check this out. They are finding it helps with almost every autoimmune disease. There has been specific research on MS and Crohns. Many people with Crohn's or colitis get the LDN prescription in the form of a transdermal cream, probably due to the absorption problem, but emptying the powder onto my tongue seems to be working for me. And remember that in the capsule, it wasn't making a difference, but the powder seems to be.
This drug is not well known to regular physicians or gastroenterologists. Much of the information online is anecdotal. It must be obtained from a compounding pharmacy. But it appears to be very safe. And it is very inexpensive. I have not had any side effects other than some insomnia and more vivid dreams. Manageable. I plan to take this drug for life.
I will let you know how I do after more time has gone by. Hopefully the news will continue to be positive. I am happy to answer any questions; I don't mind private emails. I hope this can help others.
Beverly
My story and Low Dose Naltrexone
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My story and Low Dose Naltrexone
I can do anything through Christ who strengthens me.
BeverlyI'm very glad that you found something to help you. Thanks for sharing it with us.
I never had that terrible an experience. I am trying to work by diet alone. After eliminating gluten, casein, soy and Pepto Bismol, I am making progress. I still am afraid to eat a balanced diet (fruit and vegetables) at this point.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Beverly,
It's good to see you finally posting, and it's even better to see that after so many years of suffering, you're finally beginning to see some success in treating your symptoms. We have discussed LDN here before:
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
I'm not sure if anyone here other than Mike, (mle_ii), has ever tried it - in fact, I'm not even sure if Mike ever actually tried LDN, despite saying that he would try it, (some day). (He hasn't posted in quite some time, now). That makes your first hand report about the use of LDN, (and most importantly, the results of the treatment), the first on this board, (to the best of my knowledge).
I'm puzzled as to why you didn't have any significant results after taking the LDN for almost 8 months, (using the intact capsules). That should have been sufficient time for improvement of symptoms, (even with malabsorption). When I read the info on the LDN website, the reported results are somewhat spectacular, especially for Crohn's and MS, but the site lists virtually all autoimmune diseases as candidates for resolution by means of LDN treatment. Malabsorption is a very common problem with Crohn's disease, (and, in fact, it is an issue with many/most autoimmune diseases), so I would presume that they achieved success by taking the treatment conventionally, (IOW, in the supplied capsules).
Naltrexone is extremely easy to absorb.
http://www.rxlist.com/revia-drug.htm
Still, if your malabsorption was extreme enough, I can visualize how you may not have been absorbing enough to trigger a response, assuming that you were taking a 3 or 4 mg LDN dose. It just goes to show how difficult MC can be to treat, due to all the complications that it imposes. It will be interesting to see what happens with the MS, in the long run.
I think that you are very wise to continue with a GF, DF diet. When MC is initially triggered, for most of us, a gene is triggered that causes gluten sensitivity, (and usually casein sensitivity, often soy sensitivity, and possibility a sensitivity to other foods). This gives us virtually the same risk of developing non-Hodgkins lymphoma, as untreated celiacs, if we do not cut gluten out of our diets, (permanently), even though we may be asymptomatic, (as a result of a treatment other than diet restrictions).
Thanks for posting such valuable information and insight, and please keep us updated on your progress, including the status of your MS diagnosis.
Tex
P S Just for the record, how long have you been on an uninterrupted GF, DF diet?
It's good to see you finally posting, and it's even better to see that after so many years of suffering, you're finally beginning to see some success in treating your symptoms. We have discussed LDN here before:
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
I'm not sure if anyone here other than Mike, (mle_ii), has ever tried it - in fact, I'm not even sure if Mike ever actually tried LDN, despite saying that he would try it, (some day). (He hasn't posted in quite some time, now). That makes your first hand report about the use of LDN, (and most importantly, the results of the treatment), the first on this board, (to the best of my knowledge).
I'm puzzled as to why you didn't have any significant results after taking the LDN for almost 8 months, (using the intact capsules). That should have been sufficient time for improvement of symptoms, (even with malabsorption). When I read the info on the LDN website, the reported results are somewhat spectacular, especially for Crohn's and MS, but the site lists virtually all autoimmune diseases as candidates for resolution by means of LDN treatment. Malabsorption is a very common problem with Crohn's disease, (and, in fact, it is an issue with many/most autoimmune diseases), so I would presume that they achieved success by taking the treatment conventionally, (IOW, in the supplied capsules).
Naltrexone is extremely easy to absorb.
This is from:Following oral administration, naltrexone undergoes rapid and nearly complete absorption with approximately 96% of the dose absorbed from the gastrointestinal tract. Peak plasma levels of both naltrexone and 6-(beta)-naltrexol occur within one hour of dosing.
http://www.rxlist.com/revia-drug.htm
Still, if your malabsorption was extreme enough, I can visualize how you may not have been absorbing enough to trigger a response, assuming that you were taking a 3 or 4 mg LDN dose. It just goes to show how difficult MC can be to treat, due to all the complications that it imposes. It will be interesting to see what happens with the MS, in the long run.
I think that you are very wise to continue with a GF, DF diet. When MC is initially triggered, for most of us, a gene is triggered that causes gluten sensitivity, (and usually casein sensitivity, often soy sensitivity, and possibility a sensitivity to other foods). This gives us virtually the same risk of developing non-Hodgkins lymphoma, as untreated celiacs, if we do not cut gluten out of our diets, (permanently), even though we may be asymptomatic, (as a result of a treatment other than diet restrictions).
Thanks for posting such valuable information and insight, and please keep us updated on your progress, including the status of your MS diagnosis.
Tex
P S Just for the record, how long have you been on an uninterrupted GF, DF diet?
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.
Hi Tex. Thanks.
Yeah, I don't know why taking it out of the capsule would make a difference. Who knows??? I just know that it distinctly did and "why" doesn't bother me as long as it continues to work. I do know that alot of people on the LDN group I belong to who have Crohn's take the prescription in a transdermal cream form. It MUST have something to do with absorption.
Had another "good" day today, and I'll be keeping track.
Also, the next time I go to my GP I'll have her check my thyroid antibody/hormone levels to see if there is any difference there.
To answer your question, I started "dabbling" with GF in January. Once I got that under control, I added DF, probably 2 months later. (I find it easier to do these things one at a time rather than all at once.) When I was first dx MC in 1999, gastroent. did celiac test which was negative, so I didn't try GF for the MC. Only started it after dx of MS. But it didn't help the MC at all. Nor did DF. The ONLY thing all these yrs that has made any difference was when I started putting the LDN powder straight in my mouth at beginning of Oct.
Also, due to the MS, I am trying soy free, nightshade free, trans fatty acid free. I'm "thinking about" cutting down on red meat (that's a tough one for me) due to the fact that it promotes arachadonic acid, which promotes inflammation.
I will keep you up to date on how everything goes.
I had not heard about the non-Hodgkins lymphoma link. Wow. I wish my g.e. had told me about that. I would have done GF years ago. Thanks for that info.
Beverly
Yeah, I don't know why taking it out of the capsule would make a difference. Who knows??? I just know that it distinctly did and "why" doesn't bother me as long as it continues to work. I do know that alot of people on the LDN group I belong to who have Crohn's take the prescription in a transdermal cream form. It MUST have something to do with absorption.
Had another "good" day today, and I'll be keeping track.
Also, the next time I go to my GP I'll have her check my thyroid antibody/hormone levels to see if there is any difference there.
To answer your question, I started "dabbling" with GF in January. Once I got that under control, I added DF, probably 2 months later. (I find it easier to do these things one at a time rather than all at once.) When I was first dx MC in 1999, gastroent. did celiac test which was negative, so I didn't try GF for the MC. Only started it after dx of MS. But it didn't help the MC at all. Nor did DF. The ONLY thing all these yrs that has made any difference was when I started putting the LDN powder straight in my mouth at beginning of Oct.
Also, due to the MS, I am trying soy free, nightshade free, trans fatty acid free. I'm "thinking about" cutting down on red meat (that's a tough one for me) due to the fact that it promotes arachadonic acid, which promotes inflammation.
I will keep you up to date on how everything goes.
I had not heard about the non-Hodgkins lymphoma link. Wow. I wish my g.e. had told me about that. I would have done GF years ago. Thanks for that info.
Beverly
I can do anything through Christ who strengthens me.
Maybe that capsule has an enteric coating that keeps it from being affected by stomach acid, and your pancreas is not releasing enough buffering agent to raise the pH of your small intestine sufficiently to cause the capsule to break down in time to maximize the absorption opportunity. Or, maybe stomach acid boosts the effectiveness of naltrexone, (IOW, maybe stomach acid makes it more active).
I overlooked the fact that you mentioned that a transdermal cream is available for Crohn's patients. Since MC is an IBD, (similar to Crohn's), that should work for MC patients, also.
I agree that it's a good idea to have your thyroid labs checked, since if I remember correctly, naltrexone can affect the hypothalimus, and the pituatary gland, which controls the thyroid function, (and all other hormonal functions, for that matter). It shouldn't affect it much, at such a low dose, but who knows. It's best to play it safe, since proper thyroid function is so important to so many other health issues.
Hmmmmmm. I thought that maybe you had been on the diet longer that that. On the average, it takes someone with MC much longer to achieve remission, than it does patients with celiac disease. Many of us take about a year to achieve remission, and it takes some of us longer - it took me about a year and a half, for example. It's possible that your gut is just now healing enough, that the diet is finally working for you. It's also possible that it was getting close, and the LDN is helping to speed up the process.
When I was still healing, beef would cause a "partial" reaction for me. That is to say, it would trigger the leaky gut syndrome, and I would get a stiff neck, headache, and bloating, but no D. Because of that, I pretty much concentrated on pork and poultry, and I still rarely eat beef, (because of habit, I suppose).
As far as I am aware, no member here has ever reacted adversely to potatoes, even though they are a member of the nightshade family. Some of us do react to some of the other nightshades, though. Incidentally, about half of us who are gluten sensitive, are also sensitive to soy.
Your GI may not even be aware of the lymphoma link, because I'm not sure that it is specifically mentioned in the literature, in connection with MC. The connection is with gluten sensitivity, and unfortunately, most GI docs will argue that gluten has nothing to do with MC, so it's completely off their radar. They only associate it with celiac disease, by the classic definition.
You're most welcome,
Tex
I overlooked the fact that you mentioned that a transdermal cream is available for Crohn's patients. Since MC is an IBD, (similar to Crohn's), that should work for MC patients, also.
I agree that it's a good idea to have your thyroid labs checked, since if I remember correctly, naltrexone can affect the hypothalimus, and the pituatary gland, which controls the thyroid function, (and all other hormonal functions, for that matter). It shouldn't affect it much, at such a low dose, but who knows. It's best to play it safe, since proper thyroid function is so important to so many other health issues.
Hmmmmmm. I thought that maybe you had been on the diet longer that that. On the average, it takes someone with MC much longer to achieve remission, than it does patients with celiac disease. Many of us take about a year to achieve remission, and it takes some of us longer - it took me about a year and a half, for example. It's possible that your gut is just now healing enough, that the diet is finally working for you. It's also possible that it was getting close, and the LDN is helping to speed up the process.
When I was still healing, beef would cause a "partial" reaction for me. That is to say, it would trigger the leaky gut syndrome, and I would get a stiff neck, headache, and bloating, but no D. Because of that, I pretty much concentrated on pork and poultry, and I still rarely eat beef, (because of habit, I suppose).
As far as I am aware, no member here has ever reacted adversely to potatoes, even though they are a member of the nightshade family. Some of us do react to some of the other nightshades, though. Incidentally, about half of us who are gluten sensitive, are also sensitive to soy.
Your GI may not even be aware of the lymphoma link, because I'm not sure that it is specifically mentioned in the literature, in connection with MC. The connection is with gluten sensitivity, and unfortunately, most GI docs will argue that gluten has nothing to do with MC, so it's completely off their radar. They only associate it with celiac disease, by the classic definition.
You're most welcome,
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.
Beverly,
Just bumping up this thread to see how you're doing now on LDN? I've been on 4.5 mg capsules at bedtime since March. It sent my autoimmune disease into remission within 12 weeks (miraculous!), but the MC symptoms persist, although not as bad. I'm going 1-3 times/day.
Just bumping up this thread to see how you're doing now on LDN? I've been on 4.5 mg capsules at bedtime since March. It sent my autoimmune disease into remission within 12 weeks (miraculous!), but the MC symptoms persist, although not as bad. I'm going 1-3 times/day.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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mzh
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- Location: Upstate South Carolina
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CONGRATS, BEVERLY!
I've also been on LDN since March. For once in the last 11 years I can stay off Entocort to have normal BMs. I can even eat a little gluten again without having terrible gas! It's a miracle drug for me. There are several of us here on LDN, so welcome to the club!
I've also been on LDN since March. For once in the last 11 years I can stay off Entocort to have normal BMs. I can even eat a little gluten again without having terrible gas! It's a miracle drug for me. There are several of us here on LDN, so welcome to the club!
Also have sleep apnea
The LDN information is very intriguing!
I just can't picture my GP, GI, or Rheumy doctors giving me any form of this drug.
In addition to CC, I have been diagnosed with Raynaud's, Sjorgren's, and have markers for Lupus and fibro. Winter is the worst for me, with achy joints, chills, etc. I generally feel much better in warm weather and, with my all-day gardening, am in much better shape.
My Rheumy would like me to go off the plaquinal in 3 months and see how I feel. Of, course, that will be the dead of winter - so could skew the results! I am tapering back on Celebrex after reading here that, as an NSAID, it's not good for our condition. It snowed last night up here in the "higher elevations", so I'm dreading the winter!
So, ideas on how I can start on some LDN??
I just can't picture my GP, GI, or Rheumy doctors giving me any form of this drug.
In addition to CC, I have been diagnosed with Raynaud's, Sjorgren's, and have markers for Lupus and fibro. Winter is the worst for me, with achy joints, chills, etc. I generally feel much better in warm weather and, with my all-day gardening, am in much better shape.
My Rheumy would like me to go off the plaquinal in 3 months and see how I feel. Of, course, that will be the dead of winter - so could skew the results! I am tapering back on Celebrex after reading here that, as an NSAID, it's not good for our condition. It snowed last night up here in the "higher elevations", so I'm dreading the winter!
So, ideas on how I can start on some LDN??
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mzh
- Rockhopper Penguin
- Posts: 615
- Joined: Fri Nov 12, 2010 8:03 pm
- Location: Upstate South Carolina
- Contact:
I couldn't get my docs to prescribe it for me so I ordered it online from Israel from BuyLDN (capsules, ready to take) and India from All Day Chemist (tablets that you have to mix with distilled water.
My docs don't object to my taking it but they seem to not be comfortable prescribing it. No idea why.
My docs don't object to my taking it but they seem to not be comfortable prescribing it. No idea why.
Also have sleep apnea
Beverly:
Naltrexone is considered a narcotic and is usually formulated to be time-released. If a patient cannot digest through the time-release formulation it will not work as well. By opening the capsule you by-passed this. As with most narcotics, it will slow down the gut. This is certainly needed in MC/IBD patients with diarrhea. The down side to opening a time-release capsule is that all the medicine is released at once. However since it is low dose, this is not as much of a concern.
I am so glad you finally found something that is working for you! May I ask what diets you tried? Are you taking any vitamins or minerals besides Vitamin D3? Have you used EnteroLab to detect food sensitivities/allergens?
Dr. Ann
Naltrexone is considered a narcotic and is usually formulated to be time-released. If a patient cannot digest through the time-release formulation it will not work as well. By opening the capsule you by-passed this. As with most narcotics, it will slow down the gut. This is certainly needed in MC/IBD patients with diarrhea. The down side to opening a time-release capsule is that all the medicine is released at once. However since it is low dose, this is not as much of a concern.
I am so glad you finally found something that is working for you! May I ask what diets you tried? Are you taking any vitamins or minerals besides Vitamin D3? Have you used EnteroLab to detect food sensitivities/allergens?
Dr. Ann
Because their drug reps don't recommend or promote it.Marcia wrote:My docs don't object to my taking it but they seem to not be comfortable prescribing it. No idea why.
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.