Meet Stefan (The first writer on the site from Iceland!)
My name is Stefan Steinsen and I was born in Iceland 45 years ago. I’ve been married for 23 years and we have four children, three girls and one boy. Our oldest daughters gave birth to a baby boy and a baby girl this year so we are proud grandparents. I took my undergraduate, along my wife, in Alabama, US. Currently I’m taking my Masters in EU Law & Business in Denmark. I was diagnosed with UC earlier this year and after going through hard times and many toilet trips the disease is sort of under control today with me taking two Asacol suppositories each day. I have to watch my diet and only drink beer and red wine during the weekend unless I want to increase my toilet trips. By the way I love beer and a glass of red wine. Usually one day a week I tend to flare up a bit with many toilet trips but I think its only to get rid of the leftovers.
Here’s some more abut Stefan:
I’ve been with the same woman since I was 13 years old or for almost 32 years. I used to play soccer (football in Europe) and played on scholarship for Unviversity of South Alabama in 1990’s. I come from Iceland and I love to play golf. Sometimes during the summer in Iceland I play up to 25 times in a month. Reason being, we only have 4 months to play because the other months we have winter and dark outside. I love sports and a big fan of the NBA.
LDN or Low Dose Naltrexone
Since being diagnosed I have been very interested in what steps I need to take to get better. One of the first thing that I changed was my diet and I almost immediately found a big difference. I’ve been doing my own research and reading everything I see, whether articles or something on the world wide web. Just recently I stumbled upon a article about LDN (low dose naltrexone). This medicine apparently has worked extremely well with different diseases, Crohn’s and Colitis being one of them.
There is an interesting event going on in the worldwide online patient community. There is a mass movement driven by people, not pharmaceutical corporations, striving to get the attention of mainstream doctors for the use of the medicine LDN (Low Dose Naltrexone) for effective healing of a variety of conditions, sometimes previously considered untreatable. The ´problem´ is no pharmaceutical company has the sole rights to profit from it since the immuno-modular effects of it where discovered long after it was marketed and the patent has become free. So millions of dollars needed for research and marketing have not been available. This is slowly changing though and one research from Stanford University (fibromyalgia centered) has recently verified what patients have been putting forward. The effect from it does not seem to fade even in known instances of 20 years of use. It is as toxic- & side effects free as medicine can get. Given in almost homeopathic proportions before sleep, just about when the body is about to evaluate it´s need for the immuno-modeling hormone endorphin, it increases the amounts of certain immune-system-directing type of white blood cells by up to 300% Considered one of the greatest medical discoveries of the last century, you won´t hear about this from your usual doctor – yet.
In today’s world of specialized medical care it may feel strange that a single drug is helping in so many conditions. But as you understand how it works it soon becomes clear that this is no ordinary medicine. I urge all of you to do some research on your own and ask your doctor about LDN.
Here are some links to some more information on the topic:
http://www.lowdosenaltrexone.org/gazorpa/History.html
http://www.lowdosenaltrexone.org/ldn_and_ai.htm
http://jeffreydach.com/2009/04/13/low-dose-naltrexone-ldn-2-jeffrey-dach-md.aspx
written by Stefan
submitted in the colitis venting area
My name is Stefan Steinsen and I was born in Iceland 45 years ago. I’ve been married for 23 years and we have four children, three girls and one boy. Our oldest daughters gave birth to a baby boy and a baby girl this year so we are proud grandparents.
Hi Stefan,
This is excellent news! I have been trying to get my hands on LDN for months now. Doctors here in the US refuse to think outside the box and won’t prescribe anything that does not have at least 15 different side effects. As far as I have read, the only side effect of LDN is some vivid dreams for the first few weeks, and that’s it. I read somewhere (I don’t remember where), that LDN works especially well with a change in diet. I’ve recently fired my GI precisely because he was unwilling to prescribe LDN, and am in the market for a new one. Thank you for raising awareness for this promising drug!
I do not understand the problem with getting LDN. my wife was diagnosed (mistakenly ) with MS in 2007 she opted for LDN 4.5 mg daily as an alternative treatment. in florida I can obtain it from any number of sources. even a PA can prescribe it. Go to LDNinfo.org for ways to get prescriptions in your area. you can also go through them DR Bihari LDN 4.5 is typically the maximum dose and 2.5 the lowest dose wife has been on it until just recently when her diagnosis was changed to UC… WTF sounds odd but WTF anyhow her UC symptoms did improve for some time but only a couple of years.. absolutely try LDN it is far less damaging to your system if taken for long periods of time. if it stops working then you will progress on to something else. out of pocket cost insurance wont cover off label rx 38.00 hope this helps
Is LDN the New Cure for Colitis?
Well, I can answer that very simply: NO! haha obviously, because you can’t cure colitis but can get it into remission.
I tried LDN this summer and saw no UC improvements unfortunately. There are no scientific studies for it in UC and I’ve only seen one for Crohn’s and no other studies have come after it. I made my LDN from naltrexone tablets just because it is very hard to get a prescription for it… almost impossible. I asked 5 different doctors and they all said no.
I do know of one person that takes it and she said it keeps her in remission. So it’s like any medication really… except this is like a black market drug to get. The main side effect most people get from LDN is insomnia and I definitely had that. That made it very hard to take because I enjoy sleeping… especially when I’m so sick from flaring.
Joanna,
The fact that there are no scientific studies means absolutely nothing. As Stefan points out, there is nobody to fund a study, because no one stands to profit from it. People take a lake of scientific studies to mean that it doesn’t work, when that is not true at all. A lack of scientific study is… precisely that — a lack of studies. What dosage of naltrexone were you using? What was the filler? I am absolutely not saying that LDN is a cure for colitis. BUT, as in the case for the dietary effect on UC, when people use the argument that there are no studies to justify that it does not work, this is misleading. No evidence of LDN being effective is very different from evidence of LDN being not effective.
kk, i get what you mean. i just think if the drug was making a noticeable difference, then more people would be using it or at least know about it. my GI doc said he used to prescribe it (he tried it also) but said the success rate was so low that he stopped using it in his practice. i mean, i’ve heard of WAY more people doing well on, say, mesalamines or remicade than i have of LDN.
i was on the only dosage that was technically proven to be helpful- 4.5 mg. the tablets i had were made with lactose. i worked up to the dosage but i’ve read if you go over 4.5 mg, then it won’t work.
@joanna
I agree with what you are saying. I simply don’t have any reason to believe that all doctors are in a conspiracy to prevent cures or perfect treatments for their patients. Drug companies spend billions on research in an effort to find cures so I don’t think all of them are hoping to keep everyone sick either. They could charge amazing amounts for cures and get them. They don’t get to keep making money off of people with one particular medication because so few can be taken indefinitely. Drugs have saved the lives of people whether it be from cancer or antibiotics that stopped an infection from killing the patient. If LDN can help someone, that is great but I speculate that if it was cheap to make and provided benefits they would still happily sell it to the market. They do it now with untold amounts of medicines and drugs. Think of how cheap prednisone is. Dirt cheap and highly effective. Even my visit to the allergist/immunologist proved again that the disease is incurable for most. He did say a very small percentage do ‘burn out’ on the disease and it simply goes away. If they happen to be taking something or doing something at the time, it could be mistakenly attributed to that instead of the great fortune they have being in that part of the bell curve. Thanks for posting your thoughts!!
Great post, Ordinary!
Pred is very inexpensive, and highly effective in alot of cases. LDN is also dirt cheap. Maybe not as high up on the benfits chart as pred as yet, but still there…
Happy new year to you:)
I agree with Joanna,
Not to say that it may help you..I think it is worth a try…it works differently than most UC type meds…used for all kinds of things from detox, to pain to Ms…studies are very limited and small. It is better to read blogs of individuals actually using it. My brother’s friend is a pharmacist and he talked about it with me over a year ago. I guess it puts it in the ranks of other meds and natural remedies including SCD! As we know with UC it is similar but different for everyone or it would be cured or be in remission by now . It is not a one size fits all disease! So best of luck if you try it and keep us posted….we’re all looking for the magic “pill” but too realistic to put all our eggs in 1 basket…not to mention your body will build up an immunity eventually…most likely.
best, Shelly
You have heard of way more people doing well on Mesalamine and Remicade because they are prescribed to every UC patient. LDN is not. Therefore the sheer number will be overwhelming. Furthermore, LDN has none of the side effects that Mesalimine and certainly Remicade, has. It baffles my mind that doctors still will not even _try_ to prescribe LDN, when it has no side effects, but have no qualms about putting people on prednisone or Remicade or Humira. Yes, LDN may not work for everyone. But at least they will have no side effects from it! And, you can get a months supply for less than $40! Also, using lactose as a filler may defeat the purpose for those of with UC, as we already struggle with lactose intolerance and for those on SCD it is illegal.
that’s what i’m saying. if LDN is such a good IBD drug, then why isn’t it being prescribed by more doctors? it still costs money to get/make. i figure doctors/researchers wanna figure out the cure to diseases because then they will be famous.
yeah, it sucks the filler is lactose. that’s the only way it comes in tablets. it’s such a miniscule amount though since the tablets are about a 1/4 of the size of a dime. one tablet gives you 11 days worth of LDN if you are on the 4.5 so the filler shouldn’t be a problem in most people.
What about the clinical evidence? A search of PubMed for “low-dose naltrexone” reveals only pilot and preliminary studies. The quick bottom line is that there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial, let alone a consensus of rigorous studies. What we do see is a smattering of pilot studies for a few diseases.
It’s job is a different approach to treating different maladies. And yes, there are side effects to ALL meds including natural remedies.
It is also very hard to regulate and find the right dose and best means of administration for each person. These are all facts.
Diagnosed in 2018 after mild symptoms for 6 months to a year. I have been on Apriso, Asacol, Mesalamine, Lialda, Entecort, and the last 8 months on Humria. My body has built up antibodies against the Humira. I have yet to find a drug that will help. My Dr. wants to change to Entyvio. I am researching the LDN. A family friend took LDN for 9 months. She’s been in remission for 10 years. Nine other fellow UC friends of hers have also had success with LDN. Neither of the 2 GI doctors have offered help in the diet department. It has been trial and error. I need some relief.
Where do you guys order the Naltrexone from?
Hi Everyone!
I have been taking LDN for about 8 months. The reason that I never mention it in any of my posts is because I was already in remission when I started it. Because I weigh 125 pounds, I am only on a doasge of 3.75. There was a weight calculation on the official LDN website with the 4.5 dosage pertaining to a 150 pound person.
Anyway, I love the stuff…not because I think it’s helping the UC directly, but because I sleep like a baby on it! I have never slept so well in my life, and I know how important sleep is for our bodies, including inflammation levels, thus, perhaps ultimately helping my particular UC case.
It is so true that this ‘condition’ is very unique and individual. What works for me does not necessarily work for someone else, as I have discovered time and time again. I wish it were the case, but it just isn’t.
Just my two cents on LDN. I love it for sleep. It did not cause insomnia in me…quite the opposite. Perhaps it is the dosage that I am on. I have been on 3.75 since I started, and it has never been increased because it works so well for my sleep!
Cheers,
Bev:)
:-) Bev!
I wondered if you were still taking it. Great consequence/positive side effect! I guess that plays off its original use!
Always good to add your 2cents..worth a billion!
Oh that first paragraph on my last post was a quote. Fyi all
Happy and Healthy New Year!
Best, Shelly
Shelly!
You are the most wonderful gal…
You have a superb night and also a fab 2013!! …And every other year after that too! LOL…
BTW…your two cents are always invaluable on here. I value YOUR opinions, thoughts and info so much on this site as I’m sure others do!! Always so well said and thought through. Your posts are not only smart, but a joy to read as well.
We love you Shelly!!:)
:-) Thanks Bev and right back at ya! :-)
It takes a UC village! 1 million% we can all agree on probiotics, less stress, exercise, and a positive attitude! OK stubborness, tenacity and appreciation of all the little things!
:-) 2013 :-)
hey bev! that’s so great it helps you sleep. ive only heard of people saying it keeps them up so i wonder why it works the opposite for you. what made you start it since you were in remission?
i did the same thing as you at first with calibrating my weight to the LDN dosage. i started at 1.5 and worked up to 4.5 kind of waiting for benefits to happen… which didn’t. i think the calculator said i would be at 2.75 or something. the first 3 weeks were the worst. i must’ve slept like 1 hour a night and a few hours in the day after it was out of my system. i was going insane.
i know when i went off of it though, i could feel pain much more strongly. i can’t remember the reason behind this. just wanted to warn you in case you stop!
Hey Joanna!
I know! I don’t know why it affects my sleep ‘so well’. Isn’t that something? Because I’d read alot of stories about people not being able to sleep, who took it as well. I was waiting for the insomnia, but instead, it made me so sleepy that I couldn’t stay awake! Joy to the world!!
I just wanted to take it to see if it would do anything at all for the UC…even tho I was already feeling pretty good thanks to the probiotics and L-glutamine. I remember having alot of arthritic type pain, and I was probably hoping that it would help that…which it sort of did I guess.
What kind of pain came back when you stopped it? I don’t think I’ll be dtopping it because of the sleep affect it has on me, nor will I be looking to increase the doasge to 4.5. Why, right, if it’s making me sleep so well at the 3.75 dosage?
Cheers, and a very happy new year to you too!! I hope 2013 is the year you finally finally your ‘thing’ that heals you!! You deserve it, my friend!!
Bev:)
Hey Bev,
you always said u been in remission for the longest do u think its beause of this LDN ??? also did u get a priscription for it and was it pity easy to convince your doctor ….i wonder if i mention it to my doctor what would she say…i would also like to try it….and whats the different between LDN and prednisone…..sorry for soo many questions …looking forward to hear from you and happy new year !!
You know, Hammad, I’m not entirely sure! I was already in remission before I took the LDN…but I have stayed in remission for almost a year now.
I really think it is the probiotics and L-glutamine, but perhaps the LDN is also helping. I wish I could tell you for sure.
:)
Hi Bev,
I’m glad it seems to be positively working for you Bev, so if it ain’t broke don’t fix it. I do think the L-Glutamine and pro-biotics are probably having more of an impact. I’d give Bupropion a shot, it’s good stuff and it was extremely effective for me, as effective as starting with a high dose of Prednisone or Remicade.
I also tried Low Dose Naltrexone for almost 3 months, although I can’t really say how much of a positive impact it had. I found out about it after I was already doing the fecal transplants and already was already well on the road to recovery. Then I needed to wait until I stopped taking Prednisone to start so I ended up first re-starting Apriso and starting Bupropion and Silenor first, which led to the spontaneous remission and my “a’ha” moment of declaring victory in my mind. So my symptoms had already greatly improved by the time I started taking LDN at 4.5 mg since that is how they did it in the one study I had found. I ended up getting my prescription from a psychiatrist who has been practicing for nearly 40 years, who shrugged and said “it can’t cause any harm” as he wrote the script. I ended up getting prescriptions for both 30 of 50 mg tablets with 5 refills (almost a year’s supply of 4.5 mg) for a $10 co-pay at CVS and got 30 of the 4.5 mg as capsules (also 5 refills) from a compounding pharmacy in New York City that was listed on the LowDoseNaltexone.org website, for about $25 plus shipping.
I really can’t say if LDN did anything for my case of Ulcerative Colitis, since I was already getting better from the combination of other treatments. I think the fecal transplants plus the Bupropion did it, although it did cause substantial sleeping difficulties if I took it at night. I even stayed awake all night with no sleep a couple of times in spite of taking two different sleeping pills Silenor and Ambien CR, until I started taking the dose around lunch time instead. With morning or mid day dosing I actually liked the slight mood elevating effects I think it had, which make me wonder if this is why LDN seems to help, maybe in a way similar to anti-depressants or anti-anxiety drugs or even like Bupropion. However by late November I gave up LDN. Since it just didn’t seem necessary anymore.
I know what you’re saying, Michael. I can’t say that LDN actually helped the UC. I too, was already in remission when I started it. I’ve been on it for a year, and like I said…I want to stay on it because, unlike most people, it really helps me sleep! It is a wonderful side effect that I do not want to give up…lol. I never had a problem sleeping before, really, but now, 10 minutes after taking it at bedtime, I have the most fantastic tried feeling, and I am out cold!
I can’t believe that it has no other side effects for me, because I am extremely sensitive to all medications. I love LDN…my doctor was floored when I asked for an LDN prescription renewal, because I NEVER want meds!
Cheers
:)
Hi Bev,
Love your posts, you are so knowledgeable in UC!!
As per your many posts, I’ve decided to start on L glucosamine, second day, 2 teaspoons, 1 am, 1pm, and in a few hours I feel nauseous…?
Have you felt nausea in the beginning?
Thanks
Hi again Avital,
Gee…it’s been so long that I’ve been taking it that I can’t really remember. Almost everything (drug or natural supplement) makes me nauseous at first…so probably…lol!
I take mine with a bit of real juice with no sugar added…not that that will help with nausea, but I do not enjoy the taste of L-glutamine and that way I do not have to taste it!
Good luck…by the way…it is L-glutamine that I take not glucosamine…just making sure that you are taking the correct thing?
:)
Thanks Bev,
I take l glucosamine:)
Hope for the nausea to stop in a day or so, and looking to introduce your recommended probiotic, are you still on probiotic and L gucosamine?
Cheers,
Avi
Oh yes, you bet Avi…I will take that probiotic for the rest of my life…even if there is a cure found for UC!
Best thing I ever did was incorporate a probiotic into my life. I think that every one should, UC or not, as we all lose good bacteria from time to time for various reasons….like even the flu or a cold!
Bev,
Thanks for your reply, I’ll give your recommended probiotic a try!! I’m implementing everything gradually and hope for the best. Since l glucosamine is giving me slight nausea, I’ll try to lower the dose to a not a full tea spoon, well seen ow it works.
Do you take it on an empty stomach or w food?i took on an empty stomach, maybe that’s the problem.
Thanks a bunch, cheers.
You rock!!
Avi!!
I take both the probiotic and the L-glutamine on an empty stomach. The probiotic first thing in the morning and the l-glutamine about an hour before lunch.
Hey Bev
I have been looking forward towards stating LDN…RU still taking LDN for your colitis?Is it helping you
Sorry for the late reply.
I stopped taking LDN years ago…but it did seem to help while I was taking it…although I can’t be sure because I was taking about 5 different things at the same time…I ended up dropping some of them and LDN was one of the things I stopped taking.
I have not had ANY UC symptoms for over 15 years. I still take three things and will forever…a critical care probiotic, L-glutamine, and vitamin D…all daily…and no drugs for over 15 years.
Also…I drink no alcohol and take no ibuprofen.
Just an FYI re LDN- there is a yahoo group u can join that discusses all the uses for LDN in various illnesses( don’t remember exact name but can find if go to yahoo groups). It has also been helpful for autistic kids with gut issues.
It would be nice to hear lots of anecdotal stories because of the lack of studies though.
Happy New Year all!
Hi, Stefan. I used LDN earlier this year for a few months and it was prescribed by a natureopath. Besides being in a UC flare then, I also was in an arthritis flare. I couldn’t believe how well it helped my arthritis (psoriatic)! It has to be compounded so my insurance wouldn’t pay for it and it cost me $40 a month to take it. Whilst this doesn’t sound like much, it is when you’re on disablility. I also researched buying it on the internet and found a recipe for compounding it yourself but I can’t remember if I determined if it was cost effective or not. I pay for a lot of supplements that seem to help my UC, btw, LDN didn’t help my UC, which was a bummer and like Bev, I was on a 3.5 dosage. My concern for taking it was I was told NOT to use any pain killers while taking it and what if I’m in a situation where I need to take pain killers, just saying. I didn’t find that it kept me awake but I also have chronic fatigue and am being treated for that so my natureopath gave me sleeping pills, too. Are you using LDN and is it helping? If anyone wants to try it, I suggest you find a natureopath to give you a prescription, Walgreens compounded for me. Good Luck! Happy New Year to everyone!
Stefan, sweet stuff! Never heard of any of this! This is legit, Im really going to look into this!
I’m always looking for new ideas to help me UC. Im still sadly on lialda daily, 3 per day, but I started to takse 2 the beginning of the new year, so hopefully I can get down to only 1 or 2 a day and eventually zero! Im also a avid futbol fan! I still like to play it, sadly here in the midwest their is a bit too much snow right now haha. I really want to go the Brazil 2014 world cup! That would be one heck of a trip! I read you still like to drink on weekends? I actually gave up alcohol, been nearly 2 years now since I had a sip, it was hard at first, but I still go to the bars and have a good time, usually just order a beer and carry it around the whole night…. keeps everyone from asking me why Im not drinking…. I do partake in a little medicinal marijuana on weekends and it does not bother my UC. I never did it prior to having UC, I was always a drinker, but definitely prefer it over alcohol. Not sure if its legal for medicinal purposes over their in Iceland or if you ever try it, but highly recommended over alcohol.
Hope all is well sir!
Best of luck and happy new year!
Johnny Drama
I have been on LDN for the past 2 months. It seems to slow my UC down better than the Asacol ever did. I heard about the drug from a Naturopath doctor and decided to give it a one month trial. Slowly things started to improve and have been holding steady so long as I watch my diet like a hawk. I had a hard time sleeping the first night on it but after that I had no other noticable side effects. My family doctor wanted absolutly nothing to do with it and still refuses to prescribe it, but then again he doesnt live with UC day in and day out. Best Wishes!
Hi Clint,
I am in montreal Canada and I am trying to get a Doc to prescribe me LDN and no can do. They all refuse to do it. Can you help me with this I know of a pharmacy in toronto who prepares it for people but they said I still need a prescription .
Frank
514-994-9041
I hope LDN continues to improve your UC. Unfortunately, it didn’t help mine but it sure helped my psoriatic arthritis! It was amazing. The main reason I stopped taking it is because my insurance wouldn’t pay for it and I couldn’t afford the $40 a month is cost me, especially because I do spend a lot on supplements such as probiotics that help. There is good help out there not in the form gastro prescriptions. It’s funny how doctors refuse to believe in LDN and natural cures.
Hi Maggie,
If you want to keep trying LDN, my insurance covered it as the lowest level generic drug at $10 for 30 pills, which could last you almost a year. If you do this you can crush up the pills and dissolve them in 50 mL of water (1 mL per mg of Naltrexone and administer a small amount using an oral syringe. Interesting that LDN seems to help treatPsoriatic arthritis. Have you considered Bupropion, there has been some research which has identified it as a TNF-a inhibitor like the Biologic drugs so maybe it would help there too.
That`s because the big drug companies lord over them and their practices. If they stopped giving out their harmful drugs, then everything would fall apart.
Hey, Michael K Hurst,
Thanks for the info. I did read about compounding your own LDN and buying the pills on the internet. How did you get your doctor to prescribe the pills in it’s whole form? From what I understand, 50 mg dosages are for drug addictions. It really did help my arthritis–I would go on it again just for that. I’ve never heard of Bupropion, I’ll check that out!
You can order LDN by mail from a compounding pharmacy for about $25 for a month’s supply, however dissolving tablets in water is the cheapest option. I simply mentioned Naltrexone and the doctor just wrote it for me. Psychiatrists are much more willing to prescribe than GI doctors for example. 50 mg is the FDA-approved dose to treat Opiate addiction and alcoholism and is the only strength it is manufactured in. However doctors often prescribe drugs off-label. Low dose Naltrexone is a rather extreme example of that in terms of how differently it is used than what it was approved for.
Unfortunately I can’t say if LDN made much of an impact for me, because I tried LDN at the tail end of my illness after already using fecal transplants, Bupropion, Apriso, mesalamine suppositories and Silenor to make great progress. I tried it for about 3 months. In my experience I had terrible insomnia on 4.5 mg of Naltrexone taken at night where I sometimes could not sleep at all even with 12.5 mg of Ambien CR and 6 mg of Silenor (Doxepin.) By taking it around 12:00 noon, this proved to be less of a problem and Naltrexone seemed to energize me and elevate my mood slightly.
Bupropion (Wellbutrin, Zyban) is an anti-depressant that is also approved for Seasonal Affective Disorder (depression) and prescribed for smoking cessation. A study was done years ago to see if it could be used to treat Crohn’s Disease, however no conclusive results were ever published. Try a search for Crohn’s Disease or Ulcerative Colitis and Wellbutrin or Bupropion and you will find some information. In my case the addition of Bupropion to my treatment process helped lead to an almost spontaneous remission which then lead to me effectively curing my case of Ulcerative Colitis. I have now been off all medications and been symptom-free since December 2011. I go into more detail about my experience on my website http://www.FecalTransplant.org
Michael
Hello Everyone!
I
Hello Everyone!
I am a 16 yr old girl named Sloane Viner. I have had Ulcerative Colitis for over 2 years. I`ve also had my my fair share of hospital visits, sever pain, C-DIFF twice, weight loss, potty trips, diarrhea, anemia, sucky drugs/ side effects, and pointless doctor visits. When I first started bleeding we went to a GI and got a UC diagnostic. after 1 week of supplements and a strict GAPS diet, the bleeding, gass, urgency, and pain stopped. BUT, the GI`s wanted me on APRISO in case the bleeding started. I WAS FINE W/O DRUGS….BUT THEY WERENT HAPPY ABOUT IT!!!!! Ive went on messalamine only to end up in the hospital and hemolize. I was down from 130 lbs to 85lbs. My Gi`s put me on 90MG of PREDNISONE. I became WAY over weight, lost all my brains, and ate more than my 19 yr old brother. I stayed in remission for 2 months until the bleeding came back. and then i had C-DIFF and CANDIDA. After much more crap happening and hospital stuff/evil medical GI doctors and the likes, this year my lovely mother found out about LDN and Hyper Baric Oxygen Chamber, and SCD diet. With all 3 of them put to gether, along with VSL#3, the bleeding has stopped and I`m completly normal for the first time i my enire life! I`m finally free of all the pain!I also sleep ALOT as in 10-13 HOURS a NIGHT!!!!IDK why, but i never got the strange dreams, and it actually imporves my sleeping habbits. OMG my life has returned becaue of LDN! We got a cream of LDN from a compounding pharmacy and with a prescription from my Buni(MY ENT doctor Grandma). Basically, my point is, L_D_N wORKS, BUT YOU NEED TO DO IT WITH PROPER DIET.
I agree with the sleeping part…I love LDN for that!! I sleep like a baby on it….only in a totally GOOD way!!
I love that side effect. And, in the morning…you feel completely great and normal.
Bev
:)
Sloane,
Try a course of fecal transplants (anywhere from 5 days to possibly up to a month.) They are increasingly used for c. diff and increasingly for Ulcerative Colitis as well. It worked for me for UC when everything else had failed and now I don’t need to take any drugs, pro-biotics, special diets or any more of the poop enemas and my UC has been gone since December 2011 after over 12 years of illness.
Michael
Hey Bev,
I have some questions for you regarding the supplements you take. Can you please email me so we can chat a little? My email is tillsontracy@yahoo.com
I hope to hear from you!
Thank you,
Tracy
Hi, I’d like to share my inital results with LDN. I’ve been dealing with Uc for 13 years. I had flare recenty, starting in May 2013. I refused taking immunosuppressant other than steroids. It was quite serious one so I started 50mg Prednisone and it worked as usual. I started taking LDN when I was on 20mg Prednisone and it toke me three more months to get down to 5mg Pred. That’s when I realized LDN started to working for me. Solid stool, once a day, no mucus. It was around Christmas, my sensitivity to certain foods, especially spicy foods drastically decreased. The only medication I take at the moment is 4.5 mg LDN in liquid form in the evening at around 11 pm. So far so good. I havent’t been and felt so stable in the last 4 years. Although it is too early it is just because of LDN, as I have just stopped Pred 3 weeks ago. However, tapering off was so easy for the last 5mg. And usually that is the hardest. So, if can and want give it it a try before turning to more brutal immonusupressants. All the best!
Donald…I agree about the immune suppressants…I would NEVER take them either.
Please keep us posted on the LDN. I would love to know if it continues to help keep you in remission.
I have been taking a 3.75mg capsule of the LDN for well over a year now, and because I was already in remission when I started it, I can’t be sure if it’s really done anything…but I think it helps, just not sure how. I always omit it when I tell people what I take (probiotic, L-glutamine and astaxanthin) because, like I said, I was already in remission before I took it.
Thanks for the post:)
Hi Bev, if you still comment here please advise me what Probiotic you take, i tried couple of brands but did not worked out. also I started LDN which brought me to remission for a whole one month but suddenly after taking cur cumin supplement i ended up in big flare still failing to understand how cur cumin with pepperine can cause such a flare. I also take Boswelia and Bael powder herb which helps a lotin UC but had to stop it since i noticed these herbs are aggravating my sinusitis
Hi Mirza,
I take one capsule daily of ULTIMATE FLORA CRITICAL CARE by RENEW LIFE. It is 50 billion strain strength.
First think in the morning on an empty stomach. No food or drink for at least half an hour afterward….only water.
Cheers :)
Hello all,
I finally found a physician who wrote me a prescription for LDN 4.5mg, I filled in at a compounding pharmacy in NY and started taking it about 2 weeks ago. The first two days it completely cleared all my UC symptoms. Overnight, I felt as I did two years ago prior to the onset of this disease. And that was it. Two days or relief and then quickly things went back to norm. Has anyone else experienced this with LDN or see anything about this online? thanks you!
HEY
RU still taking LDN for your colitis?
If your LDN stops working it is a good idea to drop down a dose or so as your body needs to clear it within so many hours or it builds up. When it builds up the rebound effect which causes the natural endorphin release doesn’t happen any more so you need to cut down on mg.to a dose that works for your body.
After some years on LDN I hear some people have to go occasionally a day or so between doses.
Don’t discount it out of hand :0). It doesn’t work for everyone but give it the best chance :)
I am taking LDN – It started to work wonders for me – solids within a week but then I went on holiday and skipped 3 days and bang – relapse (also owning to not being on SCD perhaps). Been back on LDN and it is having some effect for sure but nothing significant. I definitely want to do this with SCD and I have done SCD before which made me symptom free a few years back but I relapsed again when I went off it ( story in short – got preggo – went off SCD – was still symptom-free – gave birth – UC back big time)… so yeah, I want to do SCD again but it is so so damn hard.
On a lighter note, LDN gives you some pretty cool vivid dreams. I without fail dream about my daughter every night. I wake my husband up by shaking him once or twice asking where’s anna? and start looking under the covers, get up and look under the bed, cupboard…but then I go back to sleep and remember nothing the next morning. Last night I dreamt that my daughter was carrying a matress out of the room (she is 9 months so it was a bit like seeing a minion in my dream doing superhero like things) – very cool (not so cool for my husband who looks pretty shattered in the morning due to me waking him up)
Hey LDN’ers!
How are you all getting on with LDN? I started it about 4 months ago and all seems to be going well.
Would love to hear how you’re all doing after being on it longer?
Thanks!
D
Need a Doctor to prescribe me LDN in Montreal Canada !! please anybody !?
markanthony36@gmail.com
514-952-0595
I read this article and found a doctor online to write me a script. My uc symptoms literally stopped he day after taking half a dose of Ldn. I can eat whatever I want and my gut is perfect like I’m 15 again. Really is a shame gi’s don’t prescribe this first before lialda and whatever else. I was told it has a less risk profile then aspirin. If you are suffering from uc you owe it to yourself to at least try ldn.
Hey chris
IS LDN still helping you with your colitis symptoms??