LDN 5 years later

Just a brief update. 3 years ago, I started on LDN.. Kept a daily journal of my experiences here because it was a potential new treatment, and I was sort of playing guinea pig. Well, my initial diary entries seem to have vanished, so I'm not able to put the 3 year anniversary update info there as I would have liked, but I thought the info was important enough to create a new posting.

Anyway, long story... My GI now has a number of patients taking LDN, all seem to be doing remarkably well, and it was decided that a formal paper be prepared to share with other professionals who treat the disease. In light of that, and in keeping with my having the longest history with low dose naltrexone, I was asked to volunteer my medical info AND to undergo a colonoscopy. I agreed.

It took place yesterday morning. One side point I will throw in is that since it has been awhile since my last scope ( and I was undergoing it on a voluntary basis... it wasn't medically necessary based on my current symptomology) my GI offered a me a new, milder prep procedure... consisting of Ducalax 2 nights before my scope, Pico Salax 2 times the day prior to, and drinking lots of clear fluids right up until the scope while otherwise fasting. It was a cake walk in comparison to the Go Lytely prep of all my previous colonoscopies. (I highly recommend it as an alternative if available in your area).

Anyway, back to the scope. For this procedure, I was kept awake. In all my past ones, I was totally out of it (no one wants a guy my size acting out in the middle of one of these procedures). But, since this was a milestone of sorts, and there were extra staff on hand (just in case) I was awake. This is the 1st time I've seen via the monitor what my GI was seeing. The news is that I am presently totally free of any active disease activity. Nada, zilch, zero... I got to see a lot of healthy, pristine tissue. That is the good news.
There is, however, oodles and oodles of scar tissue... resembling the surface of the moon... or, perhaps more appropriately... a battlefield. I think that is the best way to refer to it. So, I have seen with my own eyes just what the LDN treatment can do, and also what it so obviously can't do. It can stop the disease in its tracks, but it can't undo the permanent scarring resulting from the fight. My GI tract will never return to it's pre disease state, but if my LDN continues to keep working (and so far no indication that it won't) my condition shouldn't deteriorate. So, all in all, it marks a happy anniversary of sorts. And I would recommend serious consideration be given of LDN to anyone else.

Oh wow Kev what a fabulous outcome! I hope the LDN continues to do the trick. Good luck!

So happy for you,
Dusty

good to see you posting again, Kev, and especially to read how well the LDN has worked for you.

your original thread is still here.... http://www.crohnsforum.com/showthread.php?t=2479

Thank you Kevin for sharing your experience. It gives me hope that sometime in the future it may be available to people like me.

Kevin - What a great outcome for you! Just to clarify, in the 3 years you've been on LDN, you have taken NO other IBD medication, no special diets, etc., and you are currently only using LDN? Where in the gut was your disease most active prior to the LDN? You mention the scarring in the colon. Was your "official" diagnosis Crohn's or UC?

Thanks!

This is great to hear. Congratulations.

I'm also curious as to what other treatments, diets, supplements you're using. Also how bad were you when you started the LDN?

That's awesome Kev. I remember you talking about LDN years ago and even made me think about going on it. Do you know if LDN has been FDA approved for the treatment of Crohns Disease yet?

OK, I guess I need to add some info... Since starting LDN, I've continued to take 4g of 5-ASA (Salofalk) daily. Couple of reasons, since my doc was going out on a limb, and 5-ASA does not conflict with LDN treatment the way that an immuno-suppressor would, it seemed like a no brainer to continue the Salofalk just in case. It is an anti-inflammatory, so it wouldn't/shouldn't hurt... and I must admit, starting off, the bit of re-assurance that I derived from continuing it didn't hurt either. I'd been taking it for quite some time prior to starting LDN, and tho it didn't seem to be doing any good, it also didn't seem to be doing any harm. That is the only other drug I'm taking, and the game plan is for me to taper off the 5-ASA next spring, when my GI is back in her office.

As for diet and supplements, I've strived to follow (tho not religiously) the diet I was put on originally... low fibre, low fat, low residue, high protein, and avoiding any simple sugar I could. I also avoid lactose (milk sugar) as I seem to be sensitive to it, but I sort of lump that with all sugars. Honey makes a good substitute, and it seems to be working. Now, I've heard from various sources (none official) that simple sugars and also simple carbs are the ultimate food for the bad bacteria. And I didn't want to feed them... And, I've also heard that one of these bad strains is candida (whether you opt to pronounce it can did a or can deed a, try getting a doctor to discuss it seriously. Lots of luck with that) and the lowdosenaltrexone site cautioned folks trying LDN for any medical issue that candida can interfere with it's success. Apparently (and this is only my homespun knowledge here, all anecdotal, no studies at hand to back it up, OK?) this candida is present in everyone, you can't erradicate it from your body no matter what you do, but you can keep it in check, or at least in balance by eating lots of garlic, olive oil, yogurt, etc., and avoiding/limiting sugars and carbs.. or taking products like 'Dida' or 'Acidophilous'.. I don't take the latter two items, but I eat yogurt every day, flavour my food with real garlic whenever practical, and use olive oil in cooking, baking, etc.. I've found my diet is 'livable', I don't feel any great sense of deprivation in my food choices, and it all seems to be working. I don't know if the diet, supplemental yogurt/food stuffs are required to be sucessful with LDN (the original study never mentioned diet, etc..), but I was already on it (this diet) before starting LDN, and again, I figured it couldn't do any harm (mind you, it wasn't helping my state of health in battling this disease prior to starting LDN). As for my condition before starting LDN, I'd say it was moderate/severe.

Hope that answers everyone's questions. I rarely get to post (my work schedule now that I'm healthy is pretty rigourous), but I'll try to pop in if an opportunity presents. If someone is trialing LDN, and it isn't working, then modifying ones diet or taking olive oil, garlic, etc., to reduce/control candida might help. You certainly can find info on that on the lowdosenaltexone website. And, agian, my favourite motto, it certainly couldn't hurt.

One last thing... I wouldn't hold my breath waiting for FDA or any other gov't approval of Naltrexone in treating this disease. Naltrexone is off patent, there are lots of generics out there, and there is no business case to be made for the company behind Naltrexone to undertake/underwrite studies to gain FDA approval. My Naltrexone costs me less than a dollar a day... there is no profit to be made here. Naltrexone is FDA approved, been around for decades (long enuff to lose patent protection), just was never conceived of for treating our disease. A doctor can legally and ethically prescribe it for us, the practice is called off patent prescribing (I think that's the term for it).
Hopefully, when the docs here who are putting together this presentation on us local guinea pigs and the success we've had with Naltrexone present it to their peer groups, the barriers of getting other docs to prescribe it will begin to come down.

inspiring

thanks for the inspirational update Ken. I am starting my LDN treatment tonight and have just had my very first dose. Wish me luck. :medal1:

All the best Aussie Lea

Be sure it is compounded right, and that it is NOT the slow acting version of Naltrexone...

Take a dose at bedtime, enjoy the vivid dreams while they last, and don't expect overnite miracles. Took weeks and weeks before it started working for me, and I got worse before I started to get better. But it did kick in, and I'm doing great. Also, don't panic if after it starts to work you get the occasional flare up. If I catch cold, flu, stuff like that which overtaxes my immune system, I still do flare. Even heavy emotional stuff like the recent passing of my mother had a temporary adverse effect on me. But it went away... It is not a cure, but it has kept my disease in check thru thick N thin for 3 yrs.

thanks

thanks for the support Ken. I unfortunately have not been able to convince my doctors to prescribe LDN for me. So I have purchased it online, it arrived yesterday,and I have made it up myself. I had a bit of a restless night, however, I woke up, walked the dogs down the beach first time for about a month, wash the floors, and am now heading off to enjoy a weekend away with my Partner. It is amazing what just being really positive can do on its own
anyway so far so good. I will keep you posted.
Regards
Lea

Great news! Any Side Effects?

Hi Kev - So glad to hear LDN is working for you. Trying to get my GI to prescribe it for me, but I'm doubtful they will. Did you have any side effects aside from vivid dreams? I ask because I have had to quit taking Imuran, Asacol, and Prednisone due to severe side effects and am terrified to try any other immuno-supressors or steriods after my adverse reactions to them. I just had resection surgery a month ago, so no scar tissue for me - I think LDN could really do the trick if there aren't many side effects. Thanks!

Taken at bedtime, the only side effects I ever experienced were wonderfully vivid dreams.

I have heard that taken too early, it may make one edgy, nervous, wound.. etc..

That is about the extent of it.

Day four on 1.5mg, sleeping terrifically, fairly wild, vivid dreams, all good though. I am feeling very positive and happy !

I am very happy to hear LDN is working for you, it gives me hope that once I convince my doctor to prescribe it to me I will experience the same results.

Question 1: When you are in remission are you able to have a normal diet?

Question 2: If I am unable to convince my doctor to prescribe LDN to me where can I purchase it online?

LDN - my short story so far

It is now March and 4 months of LDN, and still going strong on 4.5 mg, no side effects what so ever, except feeling good. My doctors wont agree to prescribe it for me so I had to purchase online. I have had no problems with this online pharmacy or with customs. Send me your email address and I will give you the details.
As for a "normal" diet, what is that :yrolleyes:
A normal diet for me is : low - nil dairy, wheat free, no nuts, or raw cabbage, carrot, or corn, low fat. I can pretty much each everything else.
I did find the SCD diet was very effective, however due to scarring and narrowing of my bowel (from multiple surgeries), i found eating too much of the almond bread was causing pain.
I hope this helps.
Good luck on your journey to better health..........
Regards
Lea

Kevin and Assie Lea, terrific to hear your stories.

Penn State just published the results of their 2nd trial this week.

If you are able to spare the time, can you please post your story on the Users Stories page at ldnscience.org ? It will help many others.

hopeful

okay, no probs, it is my bedtime in Aussie land, so i will aim to do it later in week.

good to hear.

Thanks, Kev. I have been looking around for help with my UC with fewer/no side-effects.

Hi Kev,
I have recently begun taking LDN & wonder if you are aware of a local Halifax group or of people locally who take LDN & have questions about appropriate dosage. So happy for you & your success.

hey irl (sorry, but your name was too long and complex for me to remember all of it, so I've cut it down to a manageble 3 letters)...

I know there is a group in Halifax with IBD, I've seen the occasional poster/notice in either my GI's office or in the IBD Clinic at the QEII (for non Halgonians, this is all going to sound like rubbish) regarding upcoming meetings, etc., but I've never personally attended one. My work schedule is really intense, and other not so valid excuses like that for not attending (like, who wants to pay for parking at the hospital when you are not sick?). Anyway, so far I haven't attended any, but I haven't closed the door on the idea. I don't want to be a local, vocal advocate for LDN until my GI has had time to present the findings of her little group of LDN patients to her peers for their review, as I don't want to call attention to the fact that she is prescribing it... but I also know that I couldn't keep my big mouth shut if I found myself in a group of people and LDN came up... know what I mean? OK, too long winded a reply... But, if you're from Halifax and on LDN, it is quite likely we're talking the same GI.

Kev said:

Just a brief update. 3 years ago, I started on LDN.. Kept a daily journal of my experiences here because it was a potential new treatment, and I was sort of playing guinea pig. Well, my initial diary entries seem to have vanished, so I'm not able to put the 3 year anniversary update info there as I would have liked, but I thought the info was important enough to create a new posting.

Anyway, long story... My GI now has a number of patients taking LDN, all seem to be doing remarkably well, and it was decided that a formal paper be prepared to share with other professionals who treat the disease. In light of that, and in keeping with my having the longest history with low dose naltrexone, I was asked to volunteer my medical info AND to undergo a colonoscopy. I agreed.

It took place yesterday morning. One side point I will throw in is that since it has been awhile since my last scope ( and I was undergoing it on a voluntary basis... it wasn't medically necessary based on my current symptomology) my GI offered a me a new, milder prep procedure... consisting of Ducalax 2 nights before my scope, Pico Salax 2 times the day prior to, and drinking lots of clear fluids right up until the scope while otherwise fasting. It was a cake walk in comparison to the Go Lytely prep of all my previous colonoscopies. (I highly recommend it as an alternative if available in your area).

Anyway, back to the scope. For this procedure, I was kept awake. In all my past ones, I was totally out of it (no one wants a guy my size acting out in the middle of one of these procedures). But, since this was a milestone of sorts, and there were extra staff on hand (just in case) I was awake. This is the 1st time I've seen via the monitor what my GI was seeing. The news is that I am presently totally free of any active disease activity. Nada, zilch, zero... I got to see a lot of healthy, pristine tissue. That is the good news.
There is, however, oodles and oodles of scar tissue... resembling the surface of the moon... or, perhaps more appropriately... a battlefield. I think that is the best way to refer to it. So, I have seen with my own eyes just what the LDN treatment can do, and also what it so obviously can't do. It can stop the disease in its tracks, but it can't undo the permanent scarring resulting from the fight. My GI tract will never return to it's pre disease state, but if my LDN continues to keep working (and so far no indication that it won't) my condition shouldn't deteriorate. So, all in all, it marks a happy anniversary of sorts. And I would recommend serious consideration be given of LDN to anyone else.

Click to expand...

Kev,

This sounds very encouraging and promising. What meds were on before you switched to LDN? was your GI on board with you changing to LDN. I have been thinking and that my husband should try or change to a different med. He is currently on Remiciade and I am very scared of the side effects of it.

Thank you everyone for giving all your info and experiences with LDN.

I posted on another thread and haven't gotten any responses. I am a mother/caregiver/patient advocate. My adult son has had crohns for over 15 years, was finally diagnosed at the age of 15. His crohns is severe. He refuses to go on any biological drug and has stated this to his GI doc for the last 7 years. Three years ago he was so ill, he had to have surgery. They removed most of his large intestine. He has about a foot left, if that much. The doc thought he would get a long remission. After leaving the hospital with C Diff and treating that for 2 months, his crohns returned 10 months after surgery. Now, two years later, and after having over a year remission, he had a VERY bad flare in June. The doctor wanted to put him on remicade and he refused. They treated his flare with Anitbiotics and Prednisone. I work in a research institution, which is also where his GI doc is, and saw all the info on LDN. We printed out all the information regarding the study Dr. Smith did at Penn State and his GI doc gave him the script for the LDN. We ordered it from Irmat. No lactose filler, they used Avicel. My son weaned off the predisone and started the LDN at 4.5 mgs right after, along with lialda and canasa, which was 6 weeks ago. My son felt great the first week, but by the second week he was getting very sick to his stomach in the morning, and no appetite. The upset stomach in the a.m. has just about gone away, but he still has no appetite. He has to force himself to eat. He has lost about 15 pounds since he started LDN. I was hoping this side effect would go away, and I think it is getting a little better, but he has an appointment with his GI doc in a couple of weeks and I'm afraid he is going to freak out when he see's how much weight my son has lost. I see not many people have this side effect. He plans on getting blood work next weekend just to be sure he isn't still flaring, but he feels really good regarding his crohns. He also got a bad cold about a week ago but that is now gone. I asked my son if he wanted to stop the LDN and he said NO. Does anyone think this could be something more then just a side effect. I am beside myself when I see how thin he has gotten. Any info would be GREATLY APPRECIATED! Thank you!!

It is very possible that the weight loss and loss of appetite is from his flare. I have lost 20-25 lbs - way too much on my normal 130lb. frame during a recent ulcerative colitis flare. I do not take LDN. When you're flaring, the food moves so quickly through/out of you that your body isn't absorbing any nutrients. I also lose my appetite at times and have to force myself to eat. Maybe someone who takes LDN would know if it's a side-effect of the meds. also. Good luck with the new treatment for your son!

Thanks KaLa for getting back to me. He said he feels fine as far as crohns, but that doesn't mean anything because it could very well be a flare. When he was first diagnosed, his symptoms were loosing weight and not absorbing nutrients so it could be that. He is getting blood work this weekend and that may shed some light if it is a flare. He moved into another house and I think there is mold or something in there, because he has also been feeling sick with flu like/cold symptoms in the last week. One day he is fine, and the next day sick with cold symptoms, etc. This has been going on for about the last 10 days. Thanks again for replying! Katie

Hey Everyone:

Just an update regarding my son, it anyone should care. He has been staying at my house for the last few days and seems to be getting better with the flu symptoms, et. His father had a follow up visit with our family doc on Wednesday, so he went with him. The doc gives my son a B12 shot every month for the last few years so he knows him pretty well. My son also got his blood work that same day and the doc was able to pull up his blood test results in 3 hours! The blood work is much better then it was in June and much better then we all expected. My son swore he was having a flare. His Sed. rate is down to 22, was 38 in June. AND it is only 7 points from the norm with this lab. His Hemoglob up to 13.5 from 11.5. Only a point or two off normal. White count completely normal. Only thing that seemed high was the C-react, that was up to 5.6. He didn't have that test in June. Still may be a flare or the flare from June is getting better. My son is very HAPPY. He thinks its the LDN. He has not been on any kind of steriod for the last 6 weeks, whether its prednisone or Endocort. Endocort was always one of his maintenance drugs. He thinks that may be why he lost so much weight. Only LDN and Lialda. Which is also going to stop now, because he asked the family doc to give him a script for sulfasalazine. His GI doc refused to give him that. Said too many major problems could happen. My son was taking it for 7 years with his pediatric doc and had no problem and it kept him well. Funny,the GI doc gave him the LDN but not this drug. I just hope he hasn't developed any reactions since its been so long since he last took it, and I think it was brand name, Aulfadine. He thinks his GI doc is pushing the Lialda because of the beautiful drug rep. LOL! SO.....it must have been a repiratory thing, which I still think may be mold, or he has a bug. I keep telling myself its the LDN changing his whole body that is why he is having the side effects, but the flu crap started right after Hurricane Irene and then all the rainy weather with tropical storm Lee right after.... so mold is a possibliity. At this point LDN is staying in the mix. He was been living at his dads house since last winter and I told his father I AM getting his house checked for Mold. I will pay for it. He is giving me a lot of grief about it, but I will not take NO for an answer! I don't want my son and his dog living with me forever! So, at this point in time, and almost 7 weeks since starting LDN, his/my hopes are still alive!

My mother takes LDN for her multiple sclerosis and it has been her miracle drug. This seems to be a great drug for Chrons as well.

I hope LDN continues to help your son improve. Crossing my fingers for him!

Please keep us posted!!

Hi all,

i'm here in the uk and was wondering if anyone here in Britain has tried LDN. i mentioned it to the gastro team and they had not heard of it. any ideas as to where it can be obtained from? does it need a prescription?

thanks, as i've tried everything other than infliximab infusions.

Ldn

My mom gets her's from the Shepard's Clinic in Atlanta GA. She told me it is a compound so they make it there and mail it to her. It is a prescription in the USA.

I just heard about LDN and am quite interested in this drug.. I am not getting along well with the imuran I've been prescribed this time around and think a complete switch may be in order...

Kevin, how are you doing almost four years on with LDN?

Ldn

Yes it is a prescription in the US. I am sorry I dont know anything of outside of the US. I know not every pharmacy carries it because I believe it is a compound medicine, which means it has to be made in the pharmacy by the pharmacist. My mom has to get hers out of Atlanta GA from the Shepards Clinic.

**Compound drugs, which require a prescription from a doctor, are prepared by a pharmacist who mixes or adjusts drug ingredients to customize a medication to meet a patient’s individual needs.

KTA, I've had Crohn's for 11 years, and at one time I lived in an apartment that had mold. I got so sick, not just upper respiratory but abdominal pain as well. I realized that if my body is trying to fight the mold then it is certainly attacking itself too. I got really sick until I moved out of there. Then even after moving, since I brought my furniture with me, I was still in severe pain at new apartment. It wasn't until I threw away my bed and got a new one, memory foam that doesn't allow any mold, dust mites or bacteria in it, is when I started getting better.

Although, any time I used to stay at my sister's house in Maryland, I would flare, it was because she has mold in her house. I never stay there anymore.

I also, at the same time, was taking LDN because Remicade stopped working for me, which had worked for 10 years. LDN that I had finally convinced my doc into letting me try, didn't work for me, but I think it's because of the mold. So I stopped the LDN and allowed my doctor to start me on monthly shots of Cimzia.

I really wish that I knew about this forum then, I probably wouldn't have stopped the LDN. I wish I would have given it more time. I'm so glad it's working for your son as far as the Crohn's symptoms.

Hi snowchic. Thanks for your response! My adult son is still staying with me. Just an FYI to everyone: he would never respond to anything on a thread about his crohns that is why I am here keeping folks posted about him and getting a lot of information from everyone and this site. Just want people to know he is not a MaMa's boy! He is an only child. My heart goes out to all the parents who have to deal with this disease and their children. I know we are not the ones with the disease, and my heart and prayers go out to all you crohnies, but the emotional toll for the caregiver can be very overwhelming!

My son is doing really well and is still on LDN. It's been a little over 3 months. The only set back was at the end of September, he got really, really sick in work with severe stomach pain and vomiting. I had to take him to the nearest hospital. I thought he was having a bowel obstruction or perforation. Thank God it turned out to be the best case scenario. It was a kidney stone and he passed it while we were in the ER. They kept him in the hospital for 3 days just to be sure. But they allowed him to take his LDN since it was not his crohns disease. Of course...no one has ever heard of LDN. I really think he got the kidney stone from starting the alzulfidine and not keeping himself hydrated. Now he is drinking water non stop instead of ice tea all day because he doesn't want that to happen again!

Anyway....he is feeling great! I hate to be too optimistic about it because I always get my hopes squashed. He refuses to take any biological drug. So...right now he is on LDN, alzulfidine, and canasa once in a while. He has not gained back any of the weight he loss when he first started LDN. He dropped 15 pounds. The first 6 weeks were really tough. I still don't know if it was mold, the flu, or the LDN changing his body. He had a gastro appt. last week. It was the quickest appt. we ever had with his G.I doc. I think 5 minutes. He told my son to just continue what he is doing for his crohns and to try not to loose any more weight. His next appt. is in February unless he starts having a flare before then. Hopefully NOT! The G.I. doc said he wanted him to have a colonoscopy after my son was on LDN for a few months to see how it is working, but he said it can wait until the spring.

You can always try LDN again down the road. There are a LOT of doctors out there saying it does nothing for crohns disease, but I think the people on this site are testimonials! Good luck to you and to everyone on this site!

Hi KTA, wow, a five minute appointment, that's great. Sounds like your son is doing well, just hope he can gain that weight back. I'm sure he will, in time.

I think that's great that he's being stubborn about what he puts into his body. I'm the same way, that's why I tried LDN in the first place. I just shouldn't have had an all or nothing attitude. I think it would have worked had I been on something for the Crohn's. Sounds like he's doing it the right way. Good for him.

It is great to have this forum. I sure wish my kids had this support as they were growing up, not that they would have ever participated, but they could've read about and related to living with someone with Crohn's. My daughter, especially, always felt left out because her friend's moms were taking them to the mall, and there I was stuck in bed, but it did bring us really close me being bed laying with her watching TV. My sons, (2) when I had to miss important events like their baseball games because of this disease. They still recent me for it. This kind of support for them would have been awesome. I'm glad you're getting the support you need as a caretaker. It's so important.

I hope everything continues to go well for you're son, and he stays in remission due to LDN. Keep us posted. We're all here for each other!

Time flies...

Hey folks...

Ok, so now it is over 4 years on LDN, keeping the Crohns beast at bay with no side effects to fret over. Sorry for those who posted follow-up questions to my last post for not responding, but I rarely have the time to go online these days (seriously, yesterday my workday started at 5:30 AM and ended at 7:20 PM.. and that is pretty typical... the good news is that LDN allows me to work those hours, which keeps me both in income AND full medical N disability benefits... anyone who has had to fight this disease without those knows why it is important.) Just came from my latest GI appointment, Crohns is still at bay, and can only be detected in any active state under a microscope. So, LDN does not 'cure' Crohns, and I'm not sure it (my present state of health) would be classed as 'remission' (as the disease is still there, only on a microscopic level). We discussed the possibility of colon cancer (they found a pre cancerous tumour last year... not from LDN, but because LDN kept my colon in such a good state 'they' could see it.. another benefit.
And we discussed our little 4 yr aniversary of LDN last November, and the issues I still have. Cramping/pains from residual scar tissue from my Crohns.
I have some nifty, tho not for the squemish, photos of my internal scarring. I'd like to post them on here, as it shows way better than I could explain what LDN can and can't do. It stopped my disease, but it can't eradicate the scars, and when you see the scars, you understand why one probably will have symptoms AFTER the disease has been stopped. Seeing those pics made it all too clear to me that I will always have pain, periodically have bad times on the toilet, and occasionally even have bleeding, diarhea or the big C.
Rambled on way too long, probably clouded my train of thought and that of anyone trying to read this. But the point I really want to focus on is that LDN stops Crohns, it does so without the risk of those nasty side effects the more typical Crohns meds come with, but it isn't a cure, and it can't make it all dissappear. Hmmm, wish I recalled how to import/post those photos, they really are worth a thousand words. Anyone who knows how, let me know...

Thanks, Kev, for posting. It's so great to hear that you are feeling well after 4 years!!! I hope it continues forever and hope to see you around sometimes (but, JUST to update your success story!)

HI Kev!!!!!!!!! So great to hear from ya! I am glad you are doing so well on it. Some people didnt have the same progress you have.. still trotting along myself. So glad you are able to work and keep the crohns at bay. Good stuff!

Hi Kev:

Thanks so much for posting an update! You're progress on LDN gives so much hope to all of us. My son has been on LDN now for 5 and 1/2 months and is doing really well. He had a little problem when he first started. Lost 15 pounds and never gained it back, but is feeling and looks wonderful at this point. The BEST in the last 15 years! And no other meds but Canasa, alzulfadine and LDN. He still has a lot of bowel movements everyday, not as many as some folks....maybe 5-6 depending on what he eats...but he had a lot of colon removed 4 years ago and the GI doc at that time told him to expect that since he only has about a foot of colon left. My son also has no side effects. He only needs to be sure to take the LDN the same time every night or he wakes up sick to his stomach the next day, but nothing major. We are both so thrilled that he did not have to start those nasty biologicals since he got so sick last summer, and didn't have many options left. I can only hope and pray that he has long lasting results like you. He will find out what his intestines look like as far as healing, etc. when he gets his routine colonoscopy in June. Hope one isn't necessary before that. Best of luck to you and all the others with this horrible disease! Thank you again! Katie
______________________
Son with Crohns Disease - DX at 15 in 1997
MAJOR resection in 2008
Currently on LDN, Canasa and Alulfadine

Do you get the LDN at a regular pharmacy (i.e shoppers or Lawtons or is it a special order?

LDN is a custom compound, and because of the nature of it (neurological) that has to be done under a special hood. When I started on it, there was only 1 pharmacy equipped to make my pills. Now we have two in the greater Halifax area. LDN has to be compounded correctly, and it has to be the correct type of Naltrexone (there is a Naltrexone SR - that won't work). I'd check with LDN support sites for lists of pharmacy's that are approved for compounding LDN. Then find a doctor who will prescribe it.

As for scar tissue... KTA, I don't know what your sons scope will show in June, but the scars can be nasty... almost terrifying. I wasn't prepared for the amount, or extent, or nature of the damage that this disease can do. I tried picturing it myself, but I limited my imagination to two dimensional thinking. The actual scars go in every direction, and are far larger than I ever imagined. It's odd... I was there at the time, I knew just how sick I was; but it never once dawned on me how the disease was tearing me up inside. I got to find a way to post these pics; I think they would open up a lot of eyes here, and show just how bad Crohns can be AND still be stopped by 1 LDN pill every night.

I wanna see the pictures!!! Please, can you post before and after? Or just after?

These pix were from last year... in response to questions I had about the state of my Crohns. I had a hard time rationalizing why, if my Crohn's was almost totally dormant, I continued to have pains, cramping, etc., AND why my GI wanted me to continue taking 4G of 5-ASA daily. The pictures put it into perspective. Yes, LDN knocked the fight out of my Crohns, but now I must reconcile myself to living with the aftermath, the scar tissue.

I guess if there is one key point to people in the midst of trying LDN, or considering it; to keep in the foreground... is that LDN does work, but that doesn't necessarily mean it will make all symptoms simply vanish. If you are starting LDN, and still experiencing pain, cramping, loose stool, etc., that doesn't mean the LDN isn't working. It may indeed be stopping your disease; but it can't make the damages from it simply go away. I hope I have conveyed what I'm trying to say clearly. Posting these photos would be the best way to get it across. I just don't know how to do that now. In the early days of this site, I'd upload them to the Zoints profile; then link them to this site. But the connection between here and Zoints seems to have disappeared. I guess things change. I'll see if the Advanced Options will let me... Ahhh, success. OK! WARNING: NOT FOR THE SQUEAMISH

Thank you for posting this! Yes, I can see why you still have problems. However, it looks 'old' the scar tissue. And I see 0 inflammation!

Yeah, that's exactly what it is... old scar tissue. They've done biopsies, and under the microscope they can see evidence of my Crohn's ... but otherwise no readily apparent sign visible to the naked eye... VERSUS... what, in the past, was obviously very aggressive AND rather large bouts of Crohn's. So, the LDN took my (pardon the metaphor) gigantic Crohn's and cut him down to size... microscopic size. That is what LDN can do for you.

OMG Kev......just awful! I hope my son doesn't look that bad inside. His last scope didn't show anything like that, just inflammation and narrowing of the rectum. The weird thing about it was the biopsy results came back unremarkable. I think that is the term the doctor used and he was a little surprised himself about that. I just hope my son complies and gets the colonoscopy when he is suppose to. He has a habit of not going for follow ups when he is feeling good. Then when he is sick, the colon looks horrible! I would like to see it when he isn't flaring.

Thanks Kev for the pics. I'll know what to look for when we see the pictures from his next scope. If he lets me go with him to the after appointment. He feels like an idiot that I still go with him for appointments, etc. but I don't care. I work at the facility where his GI doc is and this doctor works closely with my office so I see him often. He won't discuss anything with me unless I am at the appointment. Best of luck to you and continued success with the LDN. My wishes extent to everyone on this board!

Typical male reaction... if it isn't killing you at the moment, put it off till it is. As for biopsies, everything I had done up until 2011 were inconclusive, indeterminate, or un-remarkable. It wasn't until they found that pre-cancerous growth they removed that their biopsie (or is the singular biopsy?) FINALLY categorically stated my disease was Crohn's. In the initial first years of my illness, they could find nothing the categorized what exactly I had, UC, CC or CD. My GI finally hypothesized (ooh, bet that is spelled incorrectly) it was Crohns based on a preponderance of circumstantial evidence, but there was no 'definitive' test, biopsy, X-Ray, CT, sonogram, blood test or stool sample that would confirm that. I was astonished at first, then maddened overall by the fact that everything science could throw at it couldn't conclusively say one way or the other. I sort of felt both vindicated and relieved when the biopsy in 2011 finally laid the issue to rest AND confirmed my GI's hypothesis/diagnosis. She's a smart cookie.

Wow Kev, even at my worse my bowel wasn't that scarred up. I am glad the LDN stopped the damage from continuing. I wish GI's would open their minds to what it can do. Thanks for showing us. Pictures say a thousand words.

Well, my GI is doing her part... quadrupled the number of her patients on it, and all of us are doing fine AND she presented a report to her peers here to get the word out to other doctors. And I try to advocate LDN without forcing it on people. I think that those of us on it, doing well, owe a debt to the drug and the early study behind it to spread the word. Just have to keep in mind that there is a responsibility, even a risk, that action carries. LDN worked for me... the percentages from the 1st study indicate it seems to work for a lot of folks, at least back then on par with the other more traditional meds (I've been out of the loop, there may now be other, better performers out there), and the 'known' risks of taking LDN VS other meds seems almost a no brainer.
BUT, it won't work for everyone, and I for one all to vividly recall my early days when 1st diagnosed. I was desperate for a 'cure'. Desperate people may jump into things like LDN without examing their situation, their options, even confirming their diagnosis. Or it may be as simple as jumping in, getting the wrong compound, or a phoney compound, or a home grown version, or not giving the right version of LDN the proper chance to work. I can see some very real disaster stories coming from that type of desperation, making it easy for people who've had bad experiences with LDN to obscure, unintentionally, the 'real' benefits of the drug. I can picture it now.. you know? "These guys on this site told me to try this drug, which I did, and my condition only got worse. I wouldn't give 2 cents for that treatment, don't waste your time!". I think LDN is too important to those with IBD to take gambles with. I mean, LDN 'obviously' can't work for everyone with IBD, (which drug does?), but in the specified dosage, the proper compound, taken in good faith for a typical trial period (12 - 14 weeks) it should be a life changer for many.

OK, down off the soap box.

Sometimes I'm soooo stupid, I amaze even myself. In these and other posts I've lamented that I didn't find LDN sooner... that it could have given me alternatives to my last resection, or that I might have stopped this disease before it caused the damage as seen in the pix I've posted... OK, here is the stupid part.. My laments are a total waste of time (and energy - unless someone on this site invents time travel)... What I should be doing is telling those on this site who are at a crossroad... present treatment not working for you... inevitalby facing surgery... tired of it all... to give LDN a try. You might be able to avoid some of my mis-steps or missed opportunities. Maybe stop your disease before surgery, before irreversible scarring. Just a thought (sorry it came so late)

Kevin...If I could just knock some sense into my GI and others.....

But even if I dont, it's wonderful to hear YOU are doing well. Because you deserve it!
Thank you, thank you so very much!

Hey Kev,

Thank you so much for the update, photos, and information! You mentioned your GI presented a report to her peers. Any interest in asking her if she'd be willing to share that report on the most popular IBD related website on the internet? Or can you find out if it is in a journal where I can purchase a copy? I'd really like to read it. If the science is there I'm all for promoting LDN more.

Thanks for the well wishes. As for the peer report, I know it was presented to the local GI's who attended; but I haven't heard how it was received. I'm not sure what impact it would have in the rest of Atlantic Canada.. nor Canada as a whole. Not to mention what effect (if any) it might have on doctors in the US, the UK, etc., etc.. A peer review on a handful of patients of a GI in Halifax, NS, CAN,unfortunately, is not headline making news. I don't know if a single doctor who took in that report will try (or even consider trying) LDN on a patient of theirs. I can only hope so. In the meantime, I think the onus is on those still looking for a doctor who will prescribe LDN to continue the good fight. It may seem contra-indicated by our singular or collective experiences with doctors, but I think if they can be persuaded to try it on a patient, AND it works, they might try it (LDN) on another, and another, and... well, you get the picture. Keep on looking.. find that doctor.. be that success story... and you'll be the tip of the spear.

Ldn

Well....my son has a routine appointment this afternoon with his GI doc. He has lost a few more pounds and I'm not sure if he is flaring or if it's because he has been under a LOT of stress the last several weeks. He has also had a cold for the last month or so. He got blood work done a few days ago, and all his labs are the same as they were when he first started the LDN six months ago. His CRP came down from 5.6 to 1.5 but his Sed Rate stayed the same at 23. Hemoglobins slightly down. So...is the LDN working? He feels great but why are the labs not showing an inprovment and why is he losing weight? I keep thinking the doc today is going to want him to get a colonoscopy but my son said he refuses to get one until he feels sick. I get so annoyed because the only time he gets one is when he is sick so how do we know what his colon looks like when he isn't flaring? I reminded him that he agreed to get a colonoscopy when he first started LDN because he wanted to see if it was going to work and if his insides would heal, but now he is giving me grief. I wasn't planning on going into the examining room with him and the doc today since he is getting a little too old for his mommy to be there, but I know I won't get the whole story from him when he comes out from the appointment. And with HIPAA regulations, even though I work with his doctor at times, he will not give me any info if I am not at the appointment. The reason I have gone to his appointments all these years is because I have been his primary caregiver and I needed to know what was going on. I know he has to take care of himself at this point in life but I'm afraid that he is not going to comply and down the road, if he gets REALLY sick, it will fall on me........like ALWAYS!

Shouldn't his blood work be normal with taking LDN after all this time?

I dunno... what's normal? I have to have my blood-work repeated every 6 months, just to keep an eye on things. And, keep in mind I'm NOT in remission, that my Crohn's is still 'visible' under the microscope. My understanding (now) is that LDN is an immuno-suppressor, but I only take 1 dose a day... 1 small dose a day. Does that provide me with 24 hr protection? or 12? Who knows? I dunno... and I don't care. It is working for me, and it apparently is the 'safest' alternative out there. That is really the crux of the matter. A medicine that halts/slows the progression of this disease and is safe to take.

Thanks Kev for your response. You are so right....what is normal? Everyone is different as far as that goes. You are also right about the LDN. He still has Crohns, but it more or less is under control with the LDN. He still has to visit the bathroom several times a day, and depending on what he eats, some days its more then others.

Well....my son did allow me to go into the room with him when the GI doc examined him. The doc was not concerned with the blood work at all. He said my son is a little anemic, but not to take any extra iron because his iron levels are good. The doc said as long as he is feeling great and not having any bad symptoms, he is not concerned if he has a drop of blood in his stools every now and then or losing a couple of pounds. The doc believes that he has lost so much weight because he has no steriods in his system for the first time in several years and his body is adjusting. He told my son if he was having pain, a lot of bleeding, having more bowel movements then usual, losing a lot of weight, or any other bad symptoms regarding his crohns, he would be concerned. He told my son to continue what he is doing with his meds and he will see him in June if nothing changes. At that time he will get a routine colonoscopy. Needless to say, I was very happy. I work at a major University Hospital and my son see's one of the doc's in the Gastro Department. My son asked him how many other people in the practice were on LDN. The doc said "NO ONE"! You're the only person"! I told my son is basically a science experiment for the practice. And with no bad side effects, he does not mind at all! So, the doc gave him another script for the LDN with a few refills. He asked my son how do you know you are getting what you are paying for? How do you know you are getting LDN and the right dosage? Good Question. We don't know. We are trusting the pharmacy! It seems to be working, and that is the main thing! I have some connections at my job and I was thinking of asking one of our pharmacist if they could actually check it for me. We get LDN from Irmat Pharmacy in NY and they post on the LDN website that Irmat does monthly quality control testing. Who knows if that is true, but for now, we are happy with their service and their product.

Thanks again, Kev. I wish you continued success with the LDN and everyone else who is doing well on this drug. At this point, it's been a true blessing for my son. Take care! Katie

KTA, if your son is slightly anemic but his iron levels are good, I wonder if it might be due to folate deficiency. Has he had his folate levels checked?

Hi David! Yes....his folate was also checked and it was actually higher then normal! B-12 in normal range also. I was thinking how can he be anemic if his iron levels are fine and he isn't really losing blood. The only thing I can think of is my Endo doc told me I was slightly anemic a few weeks back and she told me that it's normal for people of mediterranean heritage to be slightly anemic. But I was told to take iron. Not sure if that is the case with my son because he is a "Mutt" (Mixed heritage).

Thanks is not necessary, but I'm not going to pass on the continued well wishes. We males can be a stubborn (might go so far as to say pig headed) bunch. The docs stating there will be a follow up colonoscopy is a good thing... I understand/commisserate even, with anyone not looking forward to prepping for a scope. I've suggested to several Dr's in the field that it would benefit them if they and their associated staff voluntarily underwent the prep from time to time, just to keep fresh in their minds what we have to go thru when they insist on a scope. Not that I'm saying scopes aren't needed, just sometimes think Dr's indulge them a bit too often at times.. more in line with covering their ass than saving ours. Anyway, so I completely understand your son's reluctance the 1st time it was broached. But the Dr's plan seems like a good one. 2nd bit... just because he is taking LDN doesn't mean that life is now totally normal. Your son might have a problem with that... I was a young male once too.
Proper rest, a good diet regimen aimed at minimizing the stress on the GI tract, and lots of vitamins, supplements and probiotics can only improve his chances. He has got to think long term. His GI tract has to last as long as possible. When I was young (not to mention foolish) I just couldn't conceive of living to the ripe old age of 45. Maybe it was cold war era mentality, maybe just stupidity. Now that I'm closer to 60 than 45, I so wish I'd taken better care of myself. I don't know if there is any way to broach this concept in a way a child will accept coming from a parent, but good luck to you on that. 3rd point... your son is the only one on LDN... I was in the same shoes once. I don't know if he realizes it, but how he 'behaves' himself while on it could impact others than just himself. My GI now has a handful of patients on it; they owe their success in part to the role I played. Same goes for your son. If he follows protocol, behaves and takes care of himself... and does well/better... then maybe a 'next' suitable candidate for LDN therapy will crop up amongst your doctors patients. You see the potential? His success may be the tipping point for 'saving' another patient, and so on, and so on. OK, down off the soapbox. All the best... I hope (and believe) that your son will continue to improve on LDN as time goes on. Stay in touch.. keep on posting. And say hi to him from me.

So Kev one more question... When you are flaring do you have to be sleeping for it to work? My DD is up using the bathroom all night long would this mess you up or were you in the same situation?

Myreinhard

I'm not sure I understand the question. If you mean do I have to be sleeping for LDN to do its thing... if that is it, then my answer is a guarded no. I say that because I have always been able to sleep. In fact, sleeping thru things, especially pain, has been a real blessing.
I sleep so deeply, so soundly, that almost nothing can rouse me. Apparently, I've been told that I swear proficiently in my sleep... my sub-conscious mind feels my pain, reacts but without my conscious mind to 'circumvent' the foul language. The pain, be it from crohns, physical deterioration due to aging or my wicked, wicked youth, who knows.

But, enough about my personal case. I've heard that, if taken awake, LDN may cause a feeling of being antsy. That was anedotal, I forget who posted it or when, and it maybe a flaw of my memory. But I think LDN is recommended at bedtime to avoid/limit any of these weird/wired feelings, AND not because it doesn't work at other times. OK?

My DD has night terrors sometimes and wakes a lot in pain and potty breaks still. Just worried this would make it crazier than it already is. Ya know.

Has anyone in BC Canada had any luck finding a doc to prescribe LDN? Mine cut me off a while back and I'd like to try it again.

Is LDN ok to take with prednisone? It's not ok to take with an imunomodulator, right?

Steroids do knock down the immune system so one would cancel the other out. But if your weening I am sure it is fine but probably just won't work as well until steroids are done.

Can't take with 6mp, Imuran.

Hmmm, I thought that someone spoke (e-mailed)Dr Smith (and another Dr whose name I've forgotten) about what one can/can't take with LDN, and I 'thought' immuno-suppressors were deemed OK. Don't hold me to this. Way back, (and I didn't know how LDN did its thing, not sure if anyone KNEW how it worked, aside from theory & conjecture) I ASSumed that LDN and immuno suppressors would counter-act each other, but I think I was WRONG. Sue me, its the 1st time I've ever been wrong... or is it the 2nd? Shoot!

I think the info is in another thread. Check the LDN useful links thread, or maybe one of our members with more on the ball than yours truly will know exactly what is what on it.

I am quoting that and what I researched. Remicade was ok but Imuran was not.

Did anyone find anybody in British Columbia that prescribes and works with LDN?
thanks

Your best bet is to check the losedosenaltrexone.org website. (unless there's a member on here from BC who is on LDN)

Where can I find a list of Dr and Pharmacies that will prescribe or compound LDN? Thanks!

There is a list of docs on www.ldnscience.org

Oh, by the way... it is November.. so I just want to wish me N LDN a very happy 5th anniversary. Hmmm, what kind of present do you get for the 5th anniversary. Right, I'd forgotten. Good health

That's wonderful Kev! Good for you So very inspiring.

Would you be ok with me changing the thread title? Maybe, "LDN 5 Years Later" or something along those lines?

Where in BC are you? A naturopath can prescribe LDN, there's one in Chilliwack that will for sure.

That would be great David. I tried changing it, and now I can't get the 'white-out' off my monitor.

Changed!

And whiteout doesn't work well, try a hammer and chisel.

Happy anniversary!! Really pleased Kev that LDN has worked so well for you. I do have to give a big thanks to you, it was your experience with LDN that made me ask my Gastro for it. For 6yrs I have been trying every med out there with no success. I have been on LDN now for almost 6 weeks and am doing so well so quickly, no symptoms whatsoever. All tests have come back looking great.
Muzz

hey, glad to hear another success story. I had my own reasons for playing lab rat way back then... but once LDN started to work, and then continued to work, I figured I owed it (to other crohnnies, to the researchers who started it all, to the fates, etc..) to spread the word. Just seems a shame that ignorance and fear amongst medical professionals has slowed/prevented this low risk method from becoming the 1st choice for treating Crohns.

Omg!!! I want to try this, but i don't feel its over here. My gastro bloke had never heard of it. I would willingly try mmj too. These are two meds i would dearly love to try cos being in so much pain with loads of D isn't a good way to be.

Kev, well done. A while back I contacted the doc who started the research on this Moshe Rogosnitzky in Israel, and he owns the patent on it (together with the doctors at Penn State University). He told me that a drug company had paid $150,000 to file international patents for this but then dropped it deciding there wasn't enough money to be made. He also said that Crohn's sufferers who will benefit from it generally see an improvement within a month (usually much faster), and it it did nothing by then, then no point in continuing.

I took it for a number of years and I recall its effect set in very rapidly.

My son is taking LDN for moderate to severe Crohns. He has developed a rash. Thinking its because of the Entocort he was taking. Has anyone else had a rash either with Entocort or with LDN?

Glenda, where is the rash? What does it look like?

It's several places ie on his wrists, elbow, legs, groin stomach neck torso neck It is smaller patches of raised bumps shiney white pimple like sometimes purple. Sometimes itchy

Glenda,
What dosage of LDN is he on? Where do you have it compounded at? Could be something in the filler he is reacting to? We have not had any side effects with the LDN but I know some others have had reactions to the filler like lactose. I'll tag littlechloe and kimmidwife and see if they have anything to add.
My son does not have any experience with Entocort, sorry. Hope it all gets worked out soon.

Thanks he gets LDN compounded in New York from the recommended pharmacy that doesn't use any filler other than plant material. He is is on 4.5

Rash is one of the commonly listed side effects for Entocort and happens sometimes when tapering off. If you stopped the LDN for a few days, you could then reintroduce it and see if it was responsible or the entorcort.

He tapered off the Entocort around the same time as the rash appeared. He had started taking the LDN for about a month prior to that. He went off the LDN for about 5 days and had a flare. The rash remained through it it all and is now getting worse. He went back on the LDN right after the flare. My suspicions are that the rash is from the Entocort. The other thing that I was wondering that I have heard that LDN can make a Candida infection worse. He is going to see a dermatologist in a couple of weeks.

Hmmm, no symptoms of skin rash here. I'm wondering whether its an extra intestinal manifestation that the Entocort was controlling since it appeared when he was tapering off. From my research on Ldn it seems that it's possible that Ldn does not work as well in the presence of candida overgrowth. However I've never read anything that suggests that Ldn makes candida worse. If the skin isn't broken, I'm a big fan of an Epsom salt bath for anything itchy. We just fill the tub up and add a few cups of the salt. You can also put a little bit of white vinegar in the water too. Let us know when you have it figured out.

There is supposedly a simple test for candida overgrowth... rinse the mouth with water, then examine the rinse for long strands/chains in the saliva. If there are, it indicates an overgrowth of candida. Problem is, doctors refuse to treat candida... it is like asking them to cure the common cold. I've heard (anecdotally, only) that acidolphilous can help in controlling candida. I've also heard that osteopathic or holistic treatments will help. All of this based on the assumption that candida is the culprit behind the rash. However, as 'hopeful' pointed out, the rash might be due to the entocort withdrawal. I have never heard of a rash associated with low doses of Naltrexone. Doesn't mean it isn't due to LDN.... just totally outside my experience or knowledge. I did develope a rash with AZA.... and even though I was immediately taken off the AZA by doctors in the Emergency Room (ahh, the fun times I spent there) the rash continued for almost a full year. And there was absolutely no doubt that the rash was a result of the AZA. So, it might be the Entocort withdrawal that is behind the rash, and it might continue or get worse despite what you do (if my experience with rashes is any indicator). I think you are absolutely right to have the rash checked by a dermatologist at your earliest possible opportunity ... and unless/until he/she suggests otherwise, continue the LDN. I have never heard of LDN making candida worse, only of candida blocking/slowing LDN from working. All the best, let us know how you make out.

Thank you so much for taking the time to share from your long term experiences. It's very comforting to hear of your successes and to feel hope for my son.
My son was also on AZA and ended up in emergency back in July. I wonder if he could have developed the rash 2 months later?
He is seeing Dr. D'Adamo a naturopath in the states (the doctor who wrote the book Eat For Your Blood Type) the doctor has treated people I know that have colitis and Crohns with great success. A naturopath will treat Candida, so that will be on the agenda for the next doctors appointment.
My son goes to university in the states and when he comes home for Xmas he sees his gastro specialist who will not respond in a positive way. She wanted him to start Humira
Again, thank you for everything you do. It means so much

Thank you so much for continuing to post on this forum despite your good health Kev, it truly is nice to read positive stories!

On a secondary note you're always one I look out for, as i'm pretty interested in going on LDN once I get my official diagnosis.

Mind you, things don't seem too positive with regards to LDN in the UK.

I pop in when I can, sorta/kinda as a form of payback, if you will. It is thanks to this site I found out about LDN. I really (and my GI wholeheartedly concurs) don't like to think about what state I would have been in IF LDN hadn't come along when it did. And when I think about the folks who are in a similar state today as I was back then... welllll, I really don't have an option but to come back here and shoot my mouth off (or type my fingers off). It really shouldn't be necessary. I mean, we are talking about a treatment that first came to light 5 1/2 years ago... and it was written up in a major GI Journal.... and then there were other trials... all coming to the very same conclusion... that LDN is a safe, effective treatment for IBD.... yet most doctors fail to give it the respect it deserves.... I guess because it doesn't cost them anything to ignore it... its their patients who are paying the price. Ooops, climbing up on the soapbox again. Let's stop right there. I appreciate the thanks... but it isn't necessary. If the shoe was on your foot, would you, or you, or you... do anything different? I really don't think so. The thing is.... once you've encountered this dreadful disease, you wouldn't wish it on your worst enemy. And if you've come up with a safe way to battle it, you'd tell the world.

It's easy to say i'd come back on here and help out, i'd like to think I would, but who really knows? At the end of the day, it's all speculation, ifs and whats. At the end of the day, you do, and I think that deserves appreciation regardless of the circumstances that brought you here. I'm glad you're in good health Kev and I hope you stay that way!

Well, the less than noble other side to it is.... LDN is a great 'treatment', but it is not a 'cure'... And, who knows... I struck gold on this site the 1st day someone posted a blurb on Dr Jill Smiths work with LDN.... maybe someday I'll see something that will lead me to an honest to goodness 'cure'... no pills, no diets, no nothing. And I'll get another chance to play 'guinea pig/lab rat'.

Or, more importantly... someday someone may come up with a vaccine that prevents a person from getting Crohns... I want my children/grandchild to get those shots.

Was a time when I came here just to hangout. It was a happening place back then. The primary reason a lot of people hung was to let their hair down, have some fun, and forget about Crohns for a while. Sure, we'd help each other, ourselves, other members, if that came up.... but not everything in life is/was about Crohns. You know what I'm talking about?