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Naltrexone

Kev, Katiesue, and I think D Bergy have been on low dose naltrexone(LDN) and they can give you more info on it. Hopefully they will see this thread soon for you. Good luck.

Also, welcome to the forum. If you would like to post your story in the My Story section it would allow users to understand what you are going through so you can get the support you need.

Best of luck

Jeff
 
I am on LDN and really did not know how much it was helping me until recently.

I ran out due to some miscommunication and went without for three weeks. I did not get any overt symptoms but my psoriasis flared up and I also had some loose stool. It is hard to separate holiday eating habits and my far too busy schedule lately from the lack of LDN, but when I started taking it again things improved again.

I am using a few different treatments that would take a while to explain, but I do think LDN helps me quite a bit by itself.

It does not work for everyone, but it seems to help more often than not. It also has no side effects worth mentioning. Quite a few good effects other than helping with Crohn's.

Dan
 
One side-effect worth mentioning is that it is not compatible with opiate use being that it's normal use is as an opiod-antagonist. Meaning, you can't take most pain killers if you're on it because it will render them worthless so if you require darvocet, vicadin, oxycodone, etc, you'll have to be at a point where you can stop taking them before starting naltrexone.
 
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Hey, I was on it for all of last summer, I think it did do some things for me... but I also think I was too far into a flare for it to totally fix me. I think all it did was keep my flare at bay for a couple months, but then it got worse and I had to go back on Remicade.

Colt is correct in saying that you can't use any pain killers while on LDN. Also, it has to be taken before bed at generally the same time everynight. If you take it and then stay awake, you'll start to feel VERY weird (like paranoid, like creepy crawlies are all over you, and just like something bad is about to happen)

It does give you some pretty vivid dreams (not nightmares for me, just vivid) and it made me sleep very hard. You also have to make sure you can find a compounding pharmacy to make it for you (places like CVS, Walmart, and Walgreens aren't going to be able to do it)

The other thing I noticed is that it cleared up a reoccuring infection I had called candidis (yeast) on my ear lobes. I think one other thing worth mentioning is when I had to miss a couple doses due to a pharmacy mixup, I was VERY depressed and went through withdrawal symptoms for those 3 days.
 

Kev

Senior Member
Hi nothingfree. Here's my LDN story, take from it what you will. I started on it late in 2007, after having been off of traditional treatments for quite a long time. By the time I started on it I was in pretty rough shape. I wrote out my day by day experiences with it on this forum. It took a long, somewhat scary time to kick in.. but when it did, it changed my life. I can't comment on the use or lack of use of opiates for pain while on it, as I haven't been... and tho it is (was) originally used for treating opiate and/or alcohol addiction, for treating those they have to use a much, much higher dose. I do know that you have to be off immuno suppressors to take LDN, as it works to reset your normal immune system so your body slowly fights off the IBD by itself. Continuing to use immuno suppressors while on LDN is only defeating the purpose. I did notice it made me abhor smoking tobacco, so I quit last summer... just before I had a major setback/flare up.
Currently, using LDN, 5-ASA, and a crohns sensible diet, I remain stable and and continue to improve. I did have vivid dreams, but those have petered out to the occasional one. It does not impact my sleep, and there are zero side effects otherwise that I'm aware of. I would caution you that LDN is not a 'miracle' cure. It simply, apparently, allows your body to deal with the IBD itself... so if you don't treat your body right, or don't eat properly, get enough rest, etc., or you get sick from something else, you might feel worse for a while. But, for me, taking my LDN, behaving myself, seems to be the formula for staying out of trouble. It sure has changed my life with this disease.
 
Anyone who takes LDN is in for a longer term recovery. It does not hit hard and you feel better right away. You may feel better right away and then regress and do the yo-yo thing for several months.

It is a subtle treatment as Kev mentioned that uses your own immune system to stem off the disease. I look at it as a gradual reversal opposite of when you aquired your disease. It takes time.

I think it is better to start it when you are not in a flare. Get a grip on the disease first by other drugs or methods and then step into LDN.

I also agree that you cannot just eat crappy food and get away with it. You still have to take care of your self.

The good part of LDN is if it works for you, it can lead to a much more normal life. And I suspect it is unlikely to stop working like other treatments can.

Dan
 
For me LDN put crohn's 100% in remission. I now take no crohn's drugs at all, just an LDN before I go to bed. I've been fine for about 6 months. It's too bad it doesn't work for everyone.
 

Kev

Senior Member
Back with another two cents worth. Here is some food for thought. LDN in the one completed study had the highest success rate of any medication based treatment of IBD. It has the least AND mildest side effects/warnings of any medication for treating IBD. From a financial aspect, I pay just under $1 a day Canadian for my custom compounded LDN (low dose naltrexone). If you compare the success rate (usually diminishing) of other meds, their potential side effects, interactions, long term health risks, and last if not least cost (if one has no drug insurance coverage), to LDN, well, it pretty much is a no brainer. Are there risks? Well, getting LDN can be a real challenge. Some doctors are reluctant to prescribe it. Forcing the issue could cost you your existing doctor/patient relationship. Getting it from less than reliable sources is fraught with peril, AND... (and I think this is perhaps one of the reasons why the original study took on patients with mild to moderate IBD.. or so it has been related.. I'm not fluent in Dr speak so the inflamatory marker ratings in the study are over my head).. since LDN takes time... time without other traditional meds.. your IBD could get a whole lot worse.. dangerously worse... before it kicks in.. or it might not kick in at all. no med is 100%.. Thats perhaps the biggest gamble of LDN.
 
So far LDN has worked well for me. My situation was severe, almost had to have my colon removed. I was in the hospital for twelve days, they started me on remicade. I had three infusions and was having pretty bad sides from it so went off in October and started LDN in mid-November. So I started LDN just two months after being so bad that they were afraid to scope me the whole way because they thought my bowel would perforate.
My issues are bloody D which is extremely worse just before and during my cycle. Each month since being on the LDN, I've had less issues and more time throughout the month where I have little or no bleeding.
I wish I would have known about LDN before I got to that point. I really don't think it would have escallated to that point had I started sooner.

Miss
 
Kevin say LDN changed his life. Given his long history of misery with the disease I really believe it has. He is also giving good advice on taking care of yourself. I do try to address the disease from several different angles.
It all starts with good food.

My bout with Crohn's was short by comparison. I look at LDN as the medication that brought my life back. I do not even like being a little sick. I hate any sickness and will do whatever needed to be rid of an illness. I have a slight hip pain that is starting to come back and I will get rid of it again, one way or another. Not treating the symptoms, correcting the cause.

Even though I spent the last eight months under great stress, with too little sleep, as general contractor on our new house, I only had one short episode of possible Crohn's symptoms. That was without LDN for three weeks. I did get one heck of a nasty flu that I thought I was going to die from, but that went away also.

I am totally happy with LDN.

Dan
 
Hey, Im wondering if you LDN users could share a little more on how long untill you started to see positive effects, and or put you into remission.

I would really like to try this at some point, however i just started methotrexate. But I have an GI appointment on Wensday and will bring this up to him.. hopefully he has at least heard of it.

thanks.
 
Thanks Kev, lots of ups and downs but in end a success, a truly inspirational story for sure.

D Bergy, I see your in Minnesota also, were you able to find a GI that would support you with this treatment? or at least one that would monitor it with you? Also do you recommend and any good GI's... I'm not so sure about mine he has never been able to 'get ahead' of this disease.. then again the pasture is always greener on the other side (or so it seems). I go to Mn Gastro.

thanks, Bill
 
I have to go near Chicago once a year to get my prescription. Not real close, but well worth it in my opinion. If you want to know the docs name PM me. Some doctors are funny about posting their name on the internet.

He is not a GI doctor but he uses LDN for several diseases. A real nice but unusual doctor.

There is one who may prescribe with just a telephone consult and questionaire, but she is in Hawaii. That would be a nice trip to make, but a little on the costly side.

I am looking for one closer, but no luck yet.

Dan
 
i'm on methotrexate and my doctor has tentatively agreed to try me on this (he doesnt know of anyone else in Aus using this method).

does anyone know if i just come off the meth and start LDN, or can i have a crossover period with the two drugs?

and does anyone have the email addy or website of that american doctor so that i can ask them directly?

thanks:)
 
Visited the GI today, and mentioned LDN to him. He had heard of it but wasnt to optimistic about it and he cited there was only 'anecdotal evidence' for it helping with crohn's. I didnt press it much, but he didnt completely dismiss either.


He is having me meet with another GI next week for a second opinion and apparently this doc has more insight on clinical studies also...My GI also mentioned the bag for the first time also :( (the main reason for the second opinion).
 
Wow Bill, so sorry to hear about the bag possiblilty. There's absolutely no way I'd go that route without at least trying LDN first. I would say I'm at least eighty percent better now than last fall before starting LDN. I've come a long way. They couldn't even scope me the whole way, thought they would perforate my colon, my case was severe. LDN is the only script I take now and things are so much better. I would absolutely try everything under the sun before a total colostomy, that's pretty extreme.

Miss
 
Only anecdotal evidence. As if that can't possibly mean anything. I use anecdotal evidence all the time and so does everyone else. For some reason anecdotal evidence works for virtually every other situation except in medicine. How many double blind studies have we used for our daily decision making processes?

I am quite sure there was a study done on this and someone that treats Crohn's for a living is irresponsible for not knowing about treatments concerning their own specialty.

Maybe you can print out the study in the link below and also go on the LDN.org site and print all the other information concerning LDN and autoimmune disease.

http://www.ncbi.nlm.nih.gov/pubmed/17222320

I agree that a bag is the last resort. LDN works more often than not, and that is a better track record than most any other Crohn's treatment out there.

Dan
 
I would also say the penn state study and peoples personal succes stories qualify over and above anecdotal evidence. But I was just happy he had heard of it and didnt rule it out.

Just recieved a phone call from my GI, we did a CT scan yesterday also and he said there were no signs of inflammation.... also none in the small bowel which was identified( and confirmed by scope ) by a CT scan in October. So thats good news. Also after seeing my blood work, which showed little inflammation, i think he thought im in worse shape am yesterday. hes thinking of doing a colonoscopy, but wants me to meet with the other GI first, to see if something 'other' may be causing me problems.

We agreed the Humira isnt really doing anything so were probally going to stop that. I started Methotrexate a couple weeks ago, gave myself my 3rd injection yesterday. The first week was really rough, headaches, nausea, severe fatigue but these effects have diminished to just fatigue. I have little hope for it but cant be sure. That said I really want to try LDN and sooner rather than later.

So my question is. Do i stick with the Metho, and hope it works once i taper my pred? OR do i cut out the Metho, begin my pred taper, then maybe once i hit 20 mg, which i traditionaly seems to keep my symptoms under control, start LDN. Then lenghten my pred taper, so its slow, giving the LDN some time to kick in while still being on a small amount of pred, and go from there, see if its working while continuing to taper?

does this make sense? seem like a reasonable plan?

please, let me know what you think.
 
Its my understanding (when I took it) that you can't be on any drugs that will suppress your immune system (like Pred). Even though it isn't an immuno-suppressant, it has that effect. This is because LDN supposedly works in the opposite fashion-- it boosts the immune system/regulates it... so an immunosuppressant will just work against you.

It may also be beneficial to you to wait a while after being off of Metho because it has immuno supressing properties as well.

My advice for you with tapering off pred is to go as painfully slow as you can... I'm talking in 2.5 and 1 mg increments. I posted my personal taper schedule HERE Post #21 on that thread. I had no problems with my taper. MBH also did a really slow taper and didn't have problems... if I remember correctly.

Good luck with the LDN if you go that route. Seems to work for some and not other.
 
First, thanks for you input.

To your first point about pred and LND I understand that they in theory contradict each other but I wont last long without pred... actually my symptoms will start back before my off-traditionaly. So its like if i want to try it this might be the only way, I will eventually taper completely however, giving LDN its fair chance... and would be prepared to suffer the consequences if LDN never kicks in. Did that make sense?

Also i wouldnt want ot start to LND for atleast a month off of metho.
 
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ive been looking into the LDN as, frankly, im desperate. looking at colon removal here and want to exhaust everything else.

Kev- i read thru your daily posts and maybe i missed it, but what conditon were you in before you started? do you know how severe your inflammation was?

im just trying to understand if this drug is for mild moderate or severe inflammation or what. trying to see if i might be a good candidate for it or am i too far gone?

anyone else with input please spill! id appreciate any and all opinions
 
My situation was severe. I was having 25 or so bm's mostly all bloody water for weeks but they got that under control first with some remicade infusions. Then I was getting a lot of sides from the remi and quit after the third one and started LDN a month later. I still think I was in pretty bad shape though when I started LDN. I was definately still anaemic so still losing blood every day. My issues are mostly with my female cycle and I have noticed great improvement each and every month since starting LDN.
At the moment I am also doing miracle mineral solution to kill any bacteria or viruses and I have noticed improvement in just the few weeks since starting that as well. My problems all started over a year ago with a stomache bug and I really don't think it was ever treated totally. So I'm hoping the mms kills off whatever caused this to begin with.
I was also still on about 20mgs of pred when I started LDN and have totally tappered so LDN is the only script I'm on and doing really well.
It's definately worth a try before surgery.

Take care,

Miss
 
I am glad you are improving so rapidly. I am also very interested in your longer term results as you are the first person I know of that is using the same method of treatment for Crohn's, as I did.

The results of one person using a particular treatment carries very little weight. Two people getting results using the same method means twice as much.

Please keep us posted on your condition. My condition is unchanged since using this method. I am non-symptomatic and living a normal life. My remaining symptom is a small patch of Psoriasis on one shin. It is better than it was when it appeared, but not gone.

Miracle Mineral Supplement is an experimental treatment and is not approved for the treatment of any disease. When mixed as directed it becomes a disinfectant known as Chlorine Dioxide primarily used for water treatment and industrial uses. I thought I should post that disclaimer for anyone who is not aware of that fact.

Thank you for the update.

Dan
 

Kev

Senior Member
Hey Kello... My condition before going on LDN was damned near critical. I had just about complete involvement (inflammation) of my remaining 4 or so feet of colon. (the only part not fully involved was the scar tissue from my resection.. go figure). The amount of inflammation above the colon was never determined accurately, as my colon inflammation was too severe to attempt to scope it.. I was on pred, but its a short term treatment at best, and I'd been on it for nearly 11 out of the past 12 months. Azathioprine had put me in the emergency room and the only 'standard' option I had left was methotrexate. Not a great option.

So, faced with that limited choice, my deteriorating condition, and reluctance of my doctor and I to go with any more pred (I was getting diminishing returns on pred... the good effects were not so good, and the tapering/withdrawal issues were getting worse and worse)... I finished my taper off pred, waiting a week (I think.. check my LDN diary.. my memory ain't what it used to be) and started on LDN. I recall that my fear it wouldn't work (that I'd be one of the few it just didn't work for.. tho thats a very low number) made the initial period very hard to deal with. I initially did get worse, then slowly, oh so slowly, started seeing minor indications it was working. Bear in mind that the only treatment I'd seen work was pred., which, in the right dosage, has an immediate/unmistakeable impact (at least it did in me, tho like I said, repeated treatments were showing lesser and lesser results). I guess what I'm trying to say is that, if one does go the LDN route, don't expect overnight eurekas. Give it your best shot, give it a bit of time to do its thing... don't mix and experiment with other typical drugs. I have no documentation to 'prove' you shouldn't, but bear in mind that LDN is an experimental drug (in treating IBD) ... and in any experiment, it is best to make one change.. and only one change.. at a time.. and not to cloud the test with a lot of other changes. Stick with the LDN, let it do its thing if its going to, and THEN... once you are sure that it is working.. if you seem room for other improvement.. diet, exercise, supplements, alternative treatments.. then add it to the mix. Just be careful. I see my current status as a delicate balance of the benefits of LDN.. it gives me a life I can live with.. I can work, earn a living, live a fairly 'normal' life... as long as I take my LDN, my 5ASA, watch my diet, get as much rest as my body dictates, and avoid physical or emotional stressors (like, my attempt to get off tobacco upset my apple cart, and took months to get it back.. as did a flu/bug that lasted over 5 weeks.. see what I am saying?). You can use diabetes as a crude analogy.. insulin, proper diet, plenty of rest, and watch out for the potential pitfalls. Do that, and you can have a pretty good life.. Screw around, and.. well, it can cost you. LDN is so new to treating IBD it really has no pedigree.. no experience.. no history.. to allow predicting what can happen if you screw it up. Without that knowledge base to draw on, I'd be very cautious... if LDN works for you.. as to what risks I'd take with it. Listen, I lost my first remission from LDN by doing something as.. 'simple'.. as... 'basic'.. as giving up tobacco. I was LUCKY that I got back what I did, BUT I still haven't reached the pinnacle I was at back then. And, I may never get it all back, OK?
 
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kev-hmm. lots to think about it seems. i 100% agree with your thoughts on experiments. i have always tried to only make one change at a time. after making the mistake of multiple changes earlier on in my disease and then never knowing which practice was the one that improved my condition. i guess i really have to mull this over. i have about a month before the sugery decision will be made, so i will mention this and see where it goes. i see that its kind of a "touchy" treatment, for lack of better word, and i feel like my GI is not one to prescribe one such as that. but, in the end i know it isnt his choice. its my colon thats gonna be gone not his!
anyway, thanks a bunch for your advice. its so much more valuable information than what you find by googling the drug.

miss- thanks for your story as well.
the fact that both you and kev got relief from your severe condtions gives me hope that it might help me too.
 
Here is an interesting LDN stoy fom a doctor who has been prescribing it for some time. Link to full article below.


JULIA SCHOPICK – Tell me how you started working with low dose naltrexone and alpha lipoic acid together?

DR. BERKSON: Let me tell you how I found low dose naltrexone. A man came into my office about 12 years ago. I’d worked for the Department of Defense as an internal medicine doctor out at White Sands Missile Range. I’d been there for several years and I thought, “I’m going to open a small practice close by in Las Cruces, New Mexico, do what I think is right, not argue with anyone, or fight with anyone at the universities, and just try to do a good job. One day, a man came in with a walker. He could hardly even move. He was about 70 years old. I asked him what was wrong, and he told me that he had just been to MD Anderson Cancer Hospital, and they told him he had metastatic prostatic cancer -- metastatic to his bones. But he also had lupus and rheumatoid arthritis. They told him he only had a few months to live. Nothing could be done. So I asked him, “Why are you in MY office?” He said he had a wife with dementia and a son with a mental disability, and he had to have them placed in a nursing home before he died. I asked what I could do for him. He said he really needed some narcotics to handle the pain. I said I’d be glad to write that prescription for him.

Then he asked me if I’d ever heard of Dr. Bernard Bihari in New York. This was 12 years ago. I said no, I never heard of him. He told me that he had heard that Dr. Bihari was curing cancer. I said, “I don’t know why you're in my office, or MD Anderson or the Mayo Clinic. I don’t see any great results for curing cancer from any of these places. I don’t know how to cure cancer. They treat cancer at MD Anderson and at the Mayo Clinic, but I haven't seen any great results with complicated cancers. So why don’t you go up and see him?” So he said, “Well, he’s just in a little office in New York. What does he know?” And I told him the story of when I was at a university hospital with alpha lipoic acid, which was really effective at regenerating livers and many other organs, too, and they just didn’t want to hear about it. They were in the liver transplant business. So I said, “Maybe if he was at a big medical center like Sloan Kettering or MD Anderson, and he discovered a simple cure for cancer, they'd probably throw him out, because it would put them out of business.” So he went up and saw Dr. Bihari. And I didn’t see him for 3 years.

Three years later, he walked in, without his walker, a normal guy. I said, “John, how are you doing?” And he said, “You know, the wind’s blowing, my nose is stuffed. I really need something for these allergies.” I said, “No, John, what about the cancer?” “Oh, Dr. Bihari cured that” – in a very relaxed way. I said, “What about the lupus and rheumatoid arthritis?” “Oh, he cured that, too.” I said, “What did he use”? He said, “Did you ever hear of naltrexone?” I said, “Sure, it’s something I've given to heroin addicts, because it occupies their opiate receptors. When they shoot up, they don’t feel the heroin.” He said, “Well, Dr. Bihari found that if you take a tiny amount of naltrexone, a very low dose, and you take it at bedtime, it sort of tweaks the opiate receptors in the brain and on the immune cells and by morning, it modulates the immune system to reverse autoimmune disease and it seems to stop many cases of terminal cancer from growing.”

I was very skeptical. But my wife had two aunts who had lupus and rheumatoid arthritis. They were actually on chemotherapy drugs, like methotrexate, and steroids like prednisone, that swelled them up. And the methotrexate was killing their bone marrow, affecting their heart. And they weren’t getting any better. So, I asked them if they wanted to try this low dose naltrexone. They said, “Sure.” In one month, they were completely normal, off all drugs, and just taking this $12 a month prescription.

Then we had maybe 100 patients who were rheumatology patients with lupus, rheumatoid arthritis, dermatomyositis. I would say that within one month, 95% of them are off all medications and feeling normal.

http://tinyurl.com/djyldv

Dan
 
Wow, for the most part this stuff really does sound like a "wonder drug" I am sure the Dr will want to put me through every other option first but with me living only 2 hours from pittsburgh PA and going there all the time, I might be able to skip the other treatment options and go right to this one, I would like a few more people to say it is a sure thing tho... like someone else said : 1 good story is nice to hear, but 2 people or 3 or 4 is going to pull more weight.

Also katiesue and a few others have said "when they were on it" does that mean it is in fact a "wonder drug" that might not always be wonderful? :(

I am just now starting to hear about LDN, funny... I have heard of alot of treatment options here that I had never heard of before, I think the Dr should hand out "treatment option" booklets to you that inform you of all this, then again I guess they don't want you to know or they want you to find them all for youself so they know you are serious about getting help. I agree with kello, "its my colon that will be gone, not his" ! Dr's always have the final say so and it is the patient who is left to suffer, so sorry to hear things are desperate for you right now kello :( If I hear of anything I will be sure to post it, on LDN or anything else.
 
LDN, just like any other drug, does not work for everyone. Statistically, seventy percent achieve total remission and about twenty percent experience sleep difficulties.
Sleep issues the first few weeks is really the only side affect and only in twenty percent. I had some dreams, nothing scary. Now I sleep better than ever. I didn't even get up to pee last night, slept real sound all night long and feel totally refreshed.

Miss
 
I had to find a doctor to prescribe it for me. My Gastroenterologist would not go along with it. But , I am at least as stubborn as he was and will find a way to do what I am after.

At my age, I certainly am capable of deciding what I will and won't take and I have been screwed by relying on doctors before. I find a doctor that is willing to work with me, I don't need direction, just information and suggestions and testing.

It is not like I made the decision lightly. I spent several months researching and treating myself beforehand. I research these things to death. I spend 10 to 12 hours a week researching Crohn's and a few other relevant diseases. I have done this for over six years for Lyme disease and the last three for Crohn's, Hidradenitis, Celiac, Arthritis, Ankylosing Spondylitis, etc.

Nothing came close to risk benefit ratio that LDN presented. That did not mean it would work for me, but nothing else carries a guarantee either. I have used riskier treatments and LDN was Kool-Aid compared to other things I have used.

If you are in or at least near Hershey, PA, you could get in on the new study on LDN.

Dan
 
Well, if no one read it on any other post then I will give the details here. maybe due to all the Dr's I have delt with in my past I went in today with determination and for the most part ready to get another "new Dr" because I figured he would simple dismiss the idea before even hearing what "LDN" stood for. I was how ever very surpprised, he took it all in with an open mind and I think half of that was due to a student Dr that was there today (dont we all love those student Drs, I mean sure they need to gain exp but c'mon, we aren't there for the common cold, ya know?) Anyway... as i was saying I actually liked this one! She is about 4 months from getting her final license and all but anyhoo, she actually went to Hershey for a school project or something and got to interview the woman up there so she knew all about LDN AND....AND... her mother has Crohns!!!! She told me that with my current condition with Crohns, she would think it would be an exalent idea for me to get on LDN now due to it being one of the safer and more effective treatments. She told me though that her mothers condition was too far advanced and that was upsetting, her mom is on remicade and she said that the infections that her mom gets is always stressful and opened up to me about how even though so far she did not have cancer it was always a worry that one day it would go in that direction :( ! She was really insightful about Crohns in general (for once I didn't have to teach the student Dr what it was she just knew what to ask and where to poke and how hard to poke and everything) and it was nice to see a Dr that had emotion, so it was a mutual feeling that we were happy to meet. So she apparently briefed my Dr before he came in about LDN and he was REALLY open minded and couldn't waite to get in touch with the woman in Hershey PA, so I am sure I will be posting here again once I hear more about that. I couldn't have dreamed of a better responce though out of a Dr, with the way I have been through them I seriously didn't have any high hopes!

Miss - I dont sleep very well as it is due to pain so.... :lol:

D Bergy - this is my family Dr I am talking about also, my GI and I dont get along at all, I see him when due for colonoscopy and that is it! Im only 24 but i agree, I am old enough to say what I will and wont take also, thank god I finally have a Dr that is willing to agree though because we all know that in the end what they give us is what we are stuck with or we get a new Dr. Believe me, I handed him every prnt out I could and even highlighted the URL for him to go check out himself, he is very excited to do so also :)
 
wow... sorry that was so long :redface: ...... got alot on my mind tonight I guess, both good and bad... but I also wanted to add, I will be checking this thread anytime I notice a new post so please keep this going and keep gathering information and for those of you on it now, PLEASE keep us all up to date on any and all good or bad things you notice :)
 
It sounds like you have found some good doctors to work with. Hang on to them as they are very rare.

I may have found a local doctor to give write me my LDN prescription. No more trips to Chicago. I can do without the 700 hundred mile drive.

Keep us posted.

Dan
 
yea, 700 miles is a biggie :(

and I must add, aren't you mr. popular around here, I tried to send you a Pm but couldn't because you are maxed out :lol:
 
I've seen quite a few posts on the LDN group from crohnnies with pain that it's the first symptom to subside. I never had pain at all, blood loss and D are my problems. Most of the people said pain subsided in the first week or so. That would be a big plus for you if that's what's keeping you up. I have been sleeping very good lately and loving it.
I was in for a check up yesterday and things are very well, got my refill. I'm good to go for the next three months!

Miss
 
Update: Met with a new GI today, I was referred to him by my GI for a second opinion. We agreed to cut out the Humira, and we agreed we would give Methotrexate a shot, I will begin my taper from 50 mg of pred soon, and will tell for sure if its working it a couple in prolly a month and half or so. So far i cant tell if its helping crohns wise but i certianly can feel the side effects. For example, my eyes are burning right now... seems to be happened about once a day lately.

This new GI helps people get placed in clinical studies, so I was hoping he had heard of LDN, he didnt. I showed him the Penn State abstract, among other things, he did read them. He said some predictable things like its just not proved etc. But also said he was 'open' to new/different treatments ect, but said he would rather see me in a clinic trial. I told him im fine with that down the road, but tried to make it clear that wouldnt happen until I tried LDN with or without his or my main GI's support(ie prescription).

So i guess I'll try the metho a little longer even though i have little hope for it, also assuming it does work, im worried I may be missing out on a better treatment (LDN) which assuming it did work would likely provide a better quality of life because of the lack of side effects/ not suppressing the immune system.

It's only a matter of time before I try LDN, whether its after i complete the taper or have to stop metho because of liver issues. But i have atleast laid a couple seeds among some GI's that havent heard of LDN and maybe they will be more open to it in the future for myself or others as another treatment option.
 
I did empty out my inbox. I'm not real good at cleaning up after myself.

I hope the Methotrexate helps you out. It is just a matter of time before something works well for you.

Dan
 

Kev

Senior Member
My options (from my wonderful GI) were metho or (after I convinced her to look at it) LDN. She agreed the risk of LDN (tho unknown) were far less than metho. I think it helped that the AZA had previously put me in emergency, so being fearful of potential side effects took on a lot more relevance. Not all doctors have their heads buried in the sand.
 
Good to know you cleaned out the inbox, now for me to remember what I was going to say to begin with :lol:

I am just really scared of alot of the risks with most of the meds and seeing as I live close enough to drive there, I am all about being in with the Hershey clinic, I will be calling my Dr on later today if he doesn't call me first anyway, hopefully by now he has had time to at least call up there and talk to that woman who does this. Who knows, maybe it will do nothing for me, but I'd rather try the safest option first!
 
How long did the LDN take before those using it started seeing any improvements? I have been on it for 3 weeks and seem to be doing worse but from reading the thread that is not that unusual. I am still on 10mg of prednisone as well.
 
The time frame can be up to six months. It all depends on the hundreds of variables that make the disease a little different for everyone.

Three weeks is not much time for LDN. Since you are also using Prednisone, I do not know what effect that will have. You are essentially using an immune suppressant and an immune booster simultaneously.

I think Kev was up and down for a few months. Not sure how he is doing right now, but since he has not been here much, I assume he is doing alright.

I started it with no symptoms so I experienced nothing. I am using it to keep myself out of trouble. It has worked for close to two years now.

Dan
 

Kev

Senior Member
I am doing fine... just recovering from a cold/flu (and not swine, since I didn't crave truffles). My intro to LDN started off slowly, no immediate improvements/eurekas.
But, since my understanding (very limited) of how naltrexone works is that it just resets the immune system so it stops aiding crohns and starts attacking it slowly, that makes sense. I can't for the life of me see how it would work (your immune system fighting off the crohns for a change) if you are taking pred to suppress your immune system. I think LDN is strictly an either/or proposition.
 
Thanks Dan and Kev, I see my GI this coming Monday and hope I can start tapering off the pred. Had a hard time convincing him to let my try LDN. Didn't want to push things when he finally gave the OK for LDN. Now I can push to get off the pred. I read on here where someone else started their LDN the same way. Oh by the way my name is Robert. I used straightpipe because back in 96 I had a fistula and that is what I had.
Does anyone know why in the Penn State trial you aren't eligible if you have had a ileocolic anastomosis? I had that surgery to correct the fistula. I was just wondering.

Robert
 
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Starting LDN Tonite

I'm currently on 13mg of Prednisone and trying to wean off. My GI was open to trying LDN and would like to monitor me a month a time.

Also on Specific Carbohydrate Diet (SCD)

Will post my progress.

RobK
 
hi Rob and welcome :) nice to hear you have a GI who is in agreement with you trying LDN, so many of us have had such trouble getting it prescribed.

good luck with it - and yes it would be good to hear how you get on with it.
 
Dan, I'm looking for Alpha Lipoic Acid supplement with no starch, dairy, gluten, etc....since I'm on SCD.

Do you know of any brands?

RobK
 
I have never used or investigated ALA, so I know less than you do. I just heard of it myself.

I have heard that it can mobilize Mercury in your body. I am not sure if that is true or what it really means, but maybe take a look at it.

Dan
 
LDN Update

On my second week of LDN and noticing small improvements. Blood in stool is very little and my energy has increased. Have also been able to cut down to 7mg of prednisone with no feeling of a flare coming on.

Have an appt with my GI tomorrow. He asked me to bring my daily journal and we'll also see if my blood test results show any improvment.

RobK
 
Glad you are improving Rob. It does normally work slowly so you are right on track.

Keep us posted on your progress. We rely a lot on user reports for LDN since not many people are using it.

Dan
 
D

Debb S

Guest
I just registered with this forum after doing an internet search for LDN forums. I have UC which has been pretty much kept in control with mesalamine drugs (Asacol, Canana, Rowasa). I had been on Remicade for a year after a really nasty flare a couple yrs ago that put me in the hospital for 9 days. Was on that for a year before deciding the side effects were too severe to continue. Luckily, symptoms didn't reappear when I went off it. I do suffer from recurring fevers though (every other day), and looked into LDN as a possible treatment. I've had the recurring fevers for about 4 yrs, which disappeared with the Remicade. They are, however, now back with a vengence.

I attended a Low Dose Naltrexone lecture at a local compounding pharmacy a few weeks ago and learned a lot. It did sound like a miracle drug treating everything from cancers to autoimmune diseases. One thing that was mentioned though, was it is NOT meant to be a cure, but rather a way to keep a disease from progressing. A Naturalpath doctor gave the lecture, which gave me an idea. Rather than try to approach my GI with the idea of LDN, I decided to go through the list of Naturalpaths covered by my insurance to find one that had experience with administering and monitoring the drug. It was a very quick and easy process requiring a few phone calls. Within a week I had an appt. with a Naturalpath who prescribed me LDN. I've been on it 9 days thus far. So far the fevers are still occuring with their same intensity, but I realize its very early yet.

I just wanted to share with the group that finding a doctor who prescribes LDN doesn't need to be a drawn out ordeal with your normal physician. Regular doctors are very leery of prescribing a drug that doesn't have large clinical studies proving its effectiveness for Crohns or UC or whatever. The large pharmaceutical companies who normally fund such studies want no part of LDN because its a cheap generic drug that's been around for decades and they wouldn't make any money from it. So its kind of a Catch 22 situation.

Perhaps my GI would have been open to the idea of LDN, but even if he had been I would rather have a doctor experienced with administering and monitoring the drug. I will eventually tell my GI I'm on LDN, but in the meantime there's really no reason he has to know. This is my body, and I choose the treatment I want to undertake.

Hope this helps someone who wants to get on LDN.
 
Thank you for the great information. I finally convinced a local doctor to prescribe LDN. No more 800 mile trips to a doctor.

I think it is good to remind us that LDN is not a cure, just a good treatment option.

I hope you do well on it.

Dan
 
My 13 yr old is on LDN and it is working

My son has had CD since he was 9 yrs old. It went to severe stage within weeks. Have tried almost all standard treatments except remicade/humira (although they were certainly available) due to risks of cancer etc when given to kids before puberty. I was always searching for a better alternative because I just didn't want my son to be another statistic, who ends up with a resection or worse.

Recently he was fortunate enough to get into the FDA approved clinical drug trial at Penn State university with Dr Jill Smith treating kids with Low Dose Naltrexone . Although he was on the placebo for the first 8 weeks... we toughed it out in the name of science and then were allowed to go on to the real LDN drug and he is still on it. His life hasn't been this good/normal since before his diagnosis. He feels great and suffers no pain and eats/drinks anything except dairy with lactose, chocolate, and chinese food (all of which trigger diarrhea/fever in the past and we still actively avoid). He gets better each day.
I was hesitant to tell the rest of the world about any perceived benefits until I was certain he was much better. But I now want to tell everyone that he feels great and his bloodwork has improved each month. I am hopeful that it lasts and that he is going to be OK now and am grateful that this drug is available. I don't just want him to cope with maintaining this disease and having it flare up thousands of times in his life, we are looking for a cure. This is as close as it gets for now and I am hopeful it will work for others. The drug study still has room for other kids as far as I know.
 
I would've gone to the moon to help my son. I can handle the 5 hour drive each way. The Ronald Mc Donald house will offer families a place to stay while in Hershey PA. They are amazing.
 
Hey I'm about to try LDN next week (with VSL#3) and I have three questions:

1. Did anyone try LDN and NOT have success on it?
2. How long do you have to be off your normal prescribed drugs? (I'm on 2g of Pentasa)
2. I went to a holistic doc and he recommended the SCD diet to go along with it. Does anyone taking LDN follow SCD or another specific diet?

Thanks!
 
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AvsGuitarist - I started LDN 9 weeks ago. I was on 10 mg of prednisone at the time. I am now down to 5 mg of prednisone. It took 8 weeks before I could say the LDN was doing anything. In fact by week 7 I was much worse. At about week 8 what a difference. I am still on Colazal and Questran. Don't believe you can go off of the (Pentasa, Asacol and Colazal) type drugs. I am on Questran because of a previous surgery. I need it to absorb the bile salts. If you start LDN give it a chance. I was just about to give up on it and now I'm sure glad I didn't. I have read where it took up to 3 months for some people. Hope it works for you.
 
I was on LDN and it didn't work for me... my new doc (a researching Ph.D doctor) tried to replicate the Penn State study but couldn't get the same results... he also said there were efficacy problems with their study. But you people here are obviously doing well on it, so yay for you!! :)
 
So I should stay on the Pentasa? I plan on giving LDN a LONG chance.

Thanks katiesue. I always hear of the successful stories with LDN but never the unsuccessful ones. Just interested to know if there's someone here it didn't work for...
 
I think the ratio is about 75% of people using it get improvement. Even with the improvement I think more needs to be done to stay healthy. LDN has kept me in remission as far as I can tell.

I think you are on the right track with the probiotics and SCD. I do not follow the SCD strictly, but I do eat a high protien, low carb, low sugar diet. I try to eat like a caveman would.

Dan
 
Just got my VSL#3 and LDN today! Seriously it's Christmas up in the hizzy! Insurance covered all the LDN (surprisingly) and the VSL#3 was $77. Just took a packet of VSL#3 and going to take the LDN tonight. Fingers crossed for all this stuff to work!

Dan -- I agree and that's how I eat too. I read the Paleo Diet by Loren Cordain in January and have mostly been eating like that ever since. Question: Do you take any other medications in conjunction with the LDN?
 
I have never taken any other medications besides LDN. I did not like the premise of lowering immune response to prevent the immune system from reacting to what I believe is a bacterial infection. This seemed to me a allopathic treatment that would likely result in more bacterial infection and more problems down the road. I was not as interested in stopping symptoms as I was in stopping the disease. The treatment has to make sense to me, before I will use it.

I do use two other alternative treatments. One brought me into remission and the other is unproven, but has worked for other infections that involve viruses and bacteria. It has not been used for Crohn's specifically to my knowledge. I have just started using it, and I have no clue if it can help.

I use whatever I can, providing it has a scientific premise that indicates it may help.

I also try to keep the alternative treatments in the low risk category, although all treatments carry some risk.

By doing this, I am learning how to treat some other diseases that my family members are dealing with, that are much more difficult than controlling Crohn's. At least more difficult than my case of Crohn's.

Dan
 
I like your thoughts too. Maybe I'll give it a whirl without the Pentasa eventually.

So you've never taken anything besides LDN?

FYI I just tried it last night. I didn't go to bed right away and man did it keep me up. My brain was SOOOO active! I had some wicked vivid dreams too. It was like a John Woo film with doves flying around. Just ridiculous. I did feel like I had more energy this morning, but it could just be the placebo effect.
 
In my 6th week of LDN and now down to 1mg of prednisone! Can honestly say I have had no flare ups. My blood work shows my hemoglobin is still low which explains my fatigue late in the day....so really that is my only challenge at this point. Still following SCD diet as well.

RobK
 
I would like to thank Dan, Kev and Miss. I used your posts and the Penn State trial to get my GI to prescribe LDN. Without your posts I may not have been able to talk him into prescribing LDN. I'm still doing good. I am feeling so much better. I have energy now; where before I was always so tired. I'm not perfect and never will be because of my previous surgery. But I would rate how I feel at 98% where before LDN I was at 30% maybe even lower. Thanks Again.

Robert
 
That is really good news!

Thank you for keeping us informed on how it is working for you. LDN is not a perfect treatment, but when it works for someone it can bring you close to a normal life.

Dan
 
What time do you guys take LDN? Mine says to take it at 9pm (I read why and understand why)

Do you take yours at 9pm or do you take it right before bed? Just curious.
 
i take mine just before i go to bed.. have found that if i stay awake, and walking around after taking it, i start to feel weird..
 
I take mine before I go to bed or between 10:00 and 12:00 PM if I am working midnight shifts.

I cannot notice any difference between taking it, or not when I am awake.

Dan
 
Glad to hear that straightpipe. I hope you continue to improve and feel better.

I have now been on LDN and no other prescription for over six months and have been doing great. I feel totally normal again. I still have some minor issues with my cycle but I'm almost a hundred percent normal. I have a long way to go to get rid of all of this pred weight but at least I'm healthy, just fat now. :lol:

I take my LDN just before bed. I sometimes wake up to use the bathroom and every once in a while I'm wide awake depending on what time I get up in the middle of the night. I found that if I'm up around three then I'm up for an hour or so. I just use that quiet time to watch TV or read. I homeschool three kids so any quiet time is welcomed, even if it's in the middle of the night. That gives me a good excuse for an afternoon catnap anyway. :)

Miss
 
Miss,

Like you I'm only taking LDN now. I was able to get off of prednisone and I've only been taking LDN for 2 1/2 months. I also following Specific Carb Diet.

I still have an issue with anemia...sometimes have fresh blood in my stool but I'm working on getting my hemoglobin up.

I understand you had some issues like that....any suggestions?

RobK
 
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Naps22

Guest
Kev said:
My options (from my wonderful GI) were metho or (after I convinced her to look at it) LDN. She agreed the risk of LDN (tho unknown) were far less than metho. I think it helped that the AZA had previously put me in emergency, so being fearful of potential side effects took on a lot more relevance. Not all doctors have their heads buried in the sand.
Since you've been on LDN for awhile now, what do your BM's look like daily on a scale of 1-10?

I really want to try this stuff but I need to be patient. It sounds like it is awfully hard to get a doctors prescription for this it. How would I go about approaching my doc to ask for something like this?

And, I know people here are probably against this, but there are ways to obtain this stuff illegally through foreign pharmacies online. Probably not the smartest idea though.
 
People are not getting LDN illegally, you can order it through different chemistry sites at fifty mgs and dilute with water and then take the specified amount.
I happen to be local to Hershey where the studies have gone on so some doctors are willing to prescribe it because of the newspaper articles and such. If you have enough supporting evidence with you, any doctor should prescribe it unless they have their head in the sand.
I've been on it almost a year and bm's are totally normal, I'd say tenish, normally two bm's in the morning, no blood, no D. Things are sometimes a little iffy around my hormonal time but haven't seen blood in months thank god.
I eat a normal diet, no restrictions, probably a little too much processed stuff really. I do try to eat healthfully most of the time but still eat commercial bread, cereal, occasional candy, sweets, or icecream, processed crap from a box like macaroni or whatever once in a while.
There have been studies done on LDN and alzheimer's. My aunt just recently mentioned this to my grandma's doctor and she seemed open to it so there are doctors around that are up on current info and willing to prescribe "off label"
I think remicade was actually a med for arthritis or something but they gave me three infusions of that poison!
I have been paying out of pocket the twenty-five bucks a month and jumping through hoops to try to get reimbursed from my insurance company. Just blows my mind that I didn't hear a word about the forty-five HUNDRED they paid out for each remi infusion but give me a hard time about LDN. This is a generic drug that's been around for twenty years or so with little side affects. They don't even know all of the sides with most current meds, that's why they occasionally pull something off the market because they figure out it's worse than originally thought.
I believe that LDN should be the first standard treatment for a lot of things, then if that doesn't work try something else. It's so cheap and works for eighty percent of crohn's patients, not sure what the numbers are for MS, cancer, etc.
If your doctor wont prescribe it, find one that will.

Miss
 
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Naps22

Guest
From what I've looked into, it seems that this is just something that works for some people, and doesn't work for others, which makes sense because it has about a 67 percent remission rate. I found a doctor in my area that prescribes LDN, thanks to somebody I met off of another forum. I'm going to call them tomorrow to try and set up an appointment, wasting no time. Although if everything works out, I probably won't start LDN for about another month because I had a remicade done about a month ago and I guess it takes a few months for that to get totally out of your system. I'm a realist I know there is a huge chance this does absolutely nothing for me but if it does work man oh man. Lets just say it's been a very very long time since I've had as little as two BM's in a day which were 10's even with remicade. If it can do ANYTHING positive for me I will be happy.
 

Kev

Senior Member
My BM's currently rate a 10 out of 10.. But that isn't always the case. For me, LDN does the trick IF I eat properly, add vitamins, supplements and probiotics to my diet. It also depends on rest, etc.. IF I get ill (like a bad flu or severe cold) then my system goes wonky for a while. It also seems to depend on my smoking. My trial last year quitting cigarettes set me back months... That's the downside of LDN. It is your reset immune system that does all the healing, and it can take its own sweet time, and your immune system sometimes can simply be overwhelmed with tasks.
 
Naps22,

I'm glad to hear you were able to find an open minded doctor. That's not easy these days.

I had my doubts about LDN but I figured I'll give it a serious try for 6 months and my GI agreed to monitor me through the process. Before started LDN I was on Specific Carb diet and was doing better but still had to rely on prednisone once in a while. Remarkably, I was able to get off prednisone just after 2 months on LDN and I have had no signs of a flare up. I've noticed slight improvements week by week...energy better, BM better and the beauty of it all is absolutely no side effects!!

My Crohn's was considered severe so that was why I decided to go on SCD diet....I find that in combination with LDN I'm not only stopping progression of Crohn's I feel like I'm actually healing. I strongly recommend the diet...it's a huge commitment but the results are amazing and the great part is down the road I will actualy be able to start introducing foods back into my diet. As for LDN, I'll definately be taking it for life!!

RobK
 
Great news Rob.

I am happy you are doing so well. My results were not as dramatic, but I was not as ill as you were to begin with.

You also confirmed my hypothesis that the severity of the disease should not be a factor in whether to try it or not. When it works, it works and severity does not indicate what kind of results you will have.

Thanks for the update. Reports from users, good or bad, help everyone here to learn a little more than before.

Dan
 
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Naps22

Guest
RobK said:
Naps22,

I'm glad to hear you were able to find an open minded doctor. That's not easy these days.

I had my doubts about LDN but I figured I'll give it a serious try for 6 months and my GI agreed to monitor me through the process. Before started LDN I was on Specific Carb diet and was doing better but still had to rely on prednisone once in a while. Remarkably, I was able to get off prednisone just after 2 months on LDN and I have had no signs of a flare up. I've noticed slight improvements week by week...energy better, BM better and the beauty of it all is absolutely no side effects!!

My Crohn's was considered severe so that was why I decided to go on SCD diet....I find that in combination with LDN I'm not only stopping progression of Crohn's I feel like I'm actually healing. I strongly recommend the diet...it's a huge commitment but the results are amazing and the great part is down the road I will actualy be able to start introducing foods back into my diet. As for LDN, I'll definately be taking it for life!!

RobK
Rob,

Glad you are doing so well. SCD diet is huge I know it is. I was on it for about 4 months and I felt the best I've felt in a long long time, and was on ZERO MEDICATION. Energy was up, focus was better, BM's weren't perfect but they were getting there. Problem was I lost about 20 lbs, so I weighed about 120 lbs at 5'10, and the diet was just too strict at the time. I'm in college right now going for a double major and I simply don't have the time to prepare every meal for myself on my own. I'd like to go on the diet again, but damn, I HATE being skinny. Once I start LDN in a few weeks (if I can get a script) I'll definitely change my diet to something close to SCD, just not fully SCD.
 
Hey Naps, I don't know what you were eating on the SCD but if you can tolerate (and like) coconut, it can be a great source to get your calories up. Coconut Ice Cream has lots of good fat in it (made only with coconut milk and honey and fruit), find a source for organic coconut milk and add it to smoothies, fry your eggs in coconut oil, add coconut oil and coconut milk to your pancakes. My son is on SCD and has gained 9 lbs in 5 weeks (also started LDN 5 weeks ago).
He hated the texture of the almond flour so we now make muffins and cookies and stuff with coconut flour.
The combo of LDN and SCD has been amazing for my son, he still has an abscess and fistula but even that seems to be getting slowly and steadily better.
 
Coconut is also antibacterial, which can be a great help in itself. Coconut Oil can be eaten for energy, as it has a huge amount of calories.

I like foods and supplements that serve many purposes to help Crohn's. Coconut is a great one.

Dan
 
here are a couple of sites that tell you exactly what LDN is

http://www.elaine-moore.com/MyArtic...itsofLowDoseNaltrexone/tabid/112/Default.aspx

http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html

I don't believe it is an opiate according to these sites and everything I have read about it, this is what it says on the first site.

LDN blocks the opiate receptor for approximately 4 hours. This intermittent blockade causes a rebound effect resulting in a dramatic increase in endogenous opiate production

Hope that helps a bit.
 
Being that LDN blocks opiate receptors, we have to stop using it if we need to take any opiate based pain killers.

That is why it was used for drug abuse. You can't get a high when you block these receptors.

That is a problem for those that need pain killers to control Crohn's symptoms.

Dan
 
It does not work all of the time, but the odds are around 75% that it will.

One mistake that is made sometimes is not getting LDN from one of the approved pharmacies on the LDN site. There have been problems in the past with compounding errors that have resulted in the LDN either not working or stop working after a while.

The pharmacies listed have been tested for proper compounding and do a lot of LDN.

I would not leave that part to chance.

Dan
 
DMS,

Thanks for the info on coconut oil! I've read about it but haven't tried it.

As far as my weight goes I've only lost about 10 lbs on SCD and have maintained 184 lbs...I'm 6'1" tall by the way.

Have you considered putting your son on LDN? There is currently a trial at Penn State for children with Crohn's.

RobK
 
Hi RobK

My son has been on LDN for 6 weeks now, and doing really well, I put a little bit more about our experience with LDN in this thread, including his blood work results.
http://www.crohnsforum.com/showthread.php?t=7192&highlight=immune

I'm very interested to hear the results of the Penn State trials for children, I hope it does really well and that pediatric GI's are a little more willing to prescribe it.

I'm glad to hear that you are doing so well on LDN. :)
 

Kev

Senior Member
One of the hazards to watch out for is the filler used in the compounding process. A lot of pharmacies will use lactose as that filler/binding agent. Problem is some folks with crohns are sensitive to lactose. (I am, its like overdosing on laxative).

I considered the SCD diet, but reviewing in convinced me it was way to rigourous for me... and the skinny on it (no real pun intended) was that one had to make at least a 2 year commitment to it without cheating if one wanted long term lasting effects. I sort of had it in my head that I wanted my life pre crohns back, and that living on the SCD diet might make me symptom free, but it wouldn't cure crohns, AND it wouldn't be me living the life I used to live, OK?

With LDN, 5ASA, vitamins, prebiotics, and a sensible (as far as crohns goes) diet.. low fat, low fibre, low residue, high protein.. (and I've learned to live with it... no great pressure to cheat.. just the occasional odd urge) I've got a GOOD life. Not the life I used to have... but a very nice life. And no fears of what my little bit of Naltrexone will do to me over the long term. Thats a big comfort.
 
I agree with Kev, in that it is nice to know that I do not have to worry about Long term side effects from LDN. Since it also protects you from Cancer and other autoimmune diseases, itis in a class by itself.

My son has a different autoimmune disease. I brought him to the doctor and he was using LDN for a short time. Then he quit taking it for reasons unknown to me.

Apparently it is not important enough to him at this time, if taking one pill a day was too much for him. He is an adult, and it is up to him now.

Some people also have this weird thing where they like to be ill. I see it quite often.
Since I absolutely despise being ill, I have no clue as to the psychological aspect of liking your illness. I have gone to some extreme treatments to put this disease in a box. I just do not want to be hindered by disease of any kind.

Dan
 
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Naps22

Guest
So I just received a prescription for LDN at 4.5 mgs. Gonna call the pharmacy tomorrow to try and get the order out. Only problem is the doc that prescribed it to me wants me to stay on Remicade. I asked him if the two could even work together and he didn't really seem to know what he was talking about. So I think I'm just going to tell him I can't afford the remicade and leave it at that, unless someone else can give me a better answer as to how to tell the doctor I don't want to be on remicade without him ousting me as a patient. Looking forward to trying out the naltrexone. Oh yea coconut ice cream is awesome.

ps - I'm only about 5 weeks out from my last infusion of remicade when I got it on august 31st. I'm not sure if I show just take the LDN when I get it or wait till I get to about 8 weeks and then start taking it. Anyone have any advice?
 
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Yeah when you come off of Remicade your body makes 40% antibodies (at least and usually) to it. When I came off of it I made antibodies until eventually it was ineffective the second time around.

Also I came off all drugs (Humira at the time) to try LDN. Remicade kills your immune system while LDN regulates and possibly builds it. It's just counterproductive to be on both. But wait til Kev or Dbergy answer this one.
 
I do not see how Remicade and LDN could possibly be compatible. I am surprised that your doctor would consider using both at the same time.

I would do one or the other, and consider the advice about not being able to use Remicade in the future if you quit now. If it is an issue of affordability, then that is going to determine your choice anyway.

It is best to start LDN when you are not flared, if that is possible. It can take a while to kick in.

Just one mans opinion, and you know what they say about opinions.

Dan
 
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Naps22

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I'm totally aware of the consequences of going off remicade, no need to remind me. I've been off of it before for about 6 months.

Truth is, this is my 2nd time trying to GET OFF remicade. I hate that drug. It hardly even effects me anymore, it makes me feel OK for like 2 weeks, then I'm back to feeling like shit, and now it starts to give me TERRIBLE rashes all over my body when I get it and I am constantly itching. Plus the minor fact that for some odd reason I just feel like repressing the natural reaction of my immune system is not a good thing, and will probably be detrimental to my well being in the future, but that's just me. I'm going to give LDN a shot sooner rather than later, I don't see any point in waiting. And yes, I'm completely aware that it may not do anything for me, but I want to at least give it a shot.
 
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I also agree with Dan that Remicade and LDN are conflicting.

Unfortunately, in order to get prescription refils for LDN you are going to have to work with your GI. In my case he was open to LDN but said that he would only agree to giving me a script as long as I did monthly blood tests and follow up appt's as well as a colonoscopy after 6 months. Which I didn't mind cause I feel like this is kind of my own personal trial with LDN. (My GI by the way thinks my success so far could be plecebo effect). Anyway, this is what you might run into unless of course you just switch to a doctor who supports LDN.

RobK
 
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