My Quest for LDN

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

ctrl z

ctrl z

Joined
Nov 12, 2011
Messages
495
So, I had a colonoscopy a few weeks ago. My doctor found pseudopolyps and an ulcer on my ileocecal valve plus was unable to perform any deep intubation because I am strictured. I don't know if the stricture is due to scar tissue or inflammation. I have an MR enterography lined up to find out. As far as the stricture goes, I can't tell I have one. I have a normal bowel movement once a day. I have been taking Pentasa, boswellia, and curcumin. Obviously those aren't enough. When the procedure was over, my doctor showed me the pictures, and I asked her what she wanted me to do. She said "Humira". I had the LDN studies in my hand and showed them to her and she said she already looked at them and was not willing to prescribe it because it is a "unconventional" treatment.

I was really sad and disappointed. I'm not ready for Humira. I have had cancer in my family. I'm not sure how much that plays a role but it's just not something I'm comfortable with at this point. In the car on the way home, I put in a call to the nurse at the GI department at Penn State. I left a message with my information and about wanting to get an appointment with Dr. Jill Smith so I can get LDN. The nurse finally called me back and stated that Dr. Smith is leaving Penn State and none of the other GI doctors there will prescribe LDN. So, there's that :(

I called a local compounding pharmacy and asked if they had any experience compounding LDN and if they could tell me which doctors in my area were prescribing it. They gave me two names and I have appointments lined up at both places (a couple months from now).

In the meantime, I also made an appointment with my GP and will ask her for LDN.

Hopefully I have good luck with my GP. With my stricture, I'm not sure it's a great idea to be waiting around for LDN for very long. I've been trying to figure out things I can do in the meantime to do the best that I can for myself such as sticking to mostly soft foods like organic bananas and peanut butter, plus organic meal replacement drinks and homemade juice.

If anyone has any insight to any of this I'd love to hear it. Am I stupid for waiting around for LDN or do I give up and give in to biologics?
 
Last edited:
I hope you get a chance to at least try ldn and see if it will help you. Our GI told us that medication will help strictures if they are due to inflammation but not if they are scar tissue. So ldn has the potential to help you depending on what's causing your problem. Don't give up on getting it. It's made a big difference for a lot of people.
 
Just chiming in because my doctor met my mentioning of LDN with some hesitance... I think that many doctors are skeptical, and my doc just said she had heard about it but that it wasn't "standard of care." She took the materials I gave her (along with a letter talking about why I would rather move on to LDN vs. an immunosuppresant) and said she'd look them over though, which was nice. She also said that she'd talk it over with another doctor there, but I know he's skeptical as well.

What sucks about LDN is that although there are some studies popping up here and there that provide some solid evidence that it's effective as a treatment for CD, there's a whole lot of stuff out there that touts LDN as this tiny miracle cure for nearly everything under the sun... and while it might be legitimately miraculous for some people dealing with chronic conditions such as CD, a lot of websites and reports don't exactly lend it a lot of credibility. Sucks for us.

On that note, it's good that doctors like Jill Smith are providing legitimate, NIH-funded research on this stuff... but this makes me wonder where Dr. Smith is headed next. I sincerely hope she continues her research elsewhere! If anyone has any insight on this, feel free to chime in.

ctrl z: Don't give up hope on getting the LDN, but don't screw around, either. Like LDN, biologics have also helped many people despite the risks (and they are quite minor, though I understand your concern, especially considering your family history). If you really want to knock things back or minimize the risk of things getting worse, maybe try enteral nutrition if you can handle it while you're pursuing the LDN angle. Otherwise, keep your options open. I sincerely wish you well! Keep us updated.
 
Thanks, Jesse :)

I'm really curious about where Dr. Smith is headed myself.

As far as Humira goes, I'm accepting that it could be in my future. When I first mentioned LDN to my doctor in her office weeks prior to the colonoscopy, she said that she could lose her license for prescribing it to me but I kept pushing and she promised to look further into the study on pubmed. I have no idea how true that is about her losing her license. It's probably just a pain in the ass because it's not a "standard of care". The more I look into how others get LDN, the more I realize that a lot of people are managing to get it from DO's more so than GI docs.

Ultimately, my doctor is supportive of me trying to get it. She would obviously rather I go on Humira but it doesn't seem like she wants to dump me for pursuing it.

There is definitely no screwing around here. I consume an incredibly safe diet. Even before finding out about the stricture I've used diet as a part of my treatment. It gives me peace of mind. I'm doing everything I can to minimize risk while the search continues.

I'll keep this thread updated.
 
Unless I've been mis-informed, prescribing LDN is not illegal or un-ethical. The process is called 'off patent' prescribing. It may be un-orthodox, but I don't believe a doctor can lose their license over it. Does that mean a doctor has nothing to lose? No! Here is what I personally believe is making doctors reluctant. If a doctor (a specialist) depends upon his or her peers in the General Medicine family to refer patients, and they begin to think that this specialist is using risky or un-orthodox treatments, those referrals will soon dry up. I could be way off the mark here, but I don't think so.

As for whether LDN is a wonder drug... Well, personally I believe it is. I wouldn't call it a miracle cure, but it seems to do a number on many types of auto-immune diseases. How it does what it does, I don't know (and don't pretend to know). But I have heard online that one of the groups (not Dr Jill Smith, who is/was testing it for pediactric crohns) who were involved in testing LDN were so impressed that everyone involved started on it as a prevention for a potential host of ailments, up to and including cancer. Seems to me that is putting their money where their mouth is ... on an extreme level no less.
 
Kev -- first off, thanks for all of the info on LDN and sharing your experiences, as it's been a big influence on me looking into it as a treatment option in the first place. Secondly, I'm not super surprised about LDN being efficient for other autoimmune diseases; it stands to reason that some of the same mechanisms are involved. I know that certain biologics that are commonly used for Crohn's are also used to treat Rheumatoid Arthritis, for example.

(Of course, I could be completely wrong. I'm no scientist!)
 
I had a feeling she was trying to deflect when she claimed she could lose her license... which is why I pushed. I do agree that a lot of them could be hesitant for the reason you stated or perhaps pressure from partners in her practice to prescribe the same things everyone else in the practice is prescribing. I don't know.

Thanks for your response, Kev... and thank you for sharing your experience with LDN here on the forum.
 
No thanks is necessary. All I ask of anyone who does try LDN is to make sure all their ducks are in a row... that it is the right form of Naltrexone, the right dosage, that they give it their best attempt.... i.e. if one doesn't see miraculous results in the first few days, don't throw in the towel. And don't muck about with a hodge podge of other meds. The reason I bandy the above about is that... LDN does work (although unfortunately not for everyone) and YET it remains one of medicines best kept secrets. We (who have been fortunate enough to have it prescribed) owe it to the world of other Crohnnies to give it our best shot to make it work, and if it does, spread the news.
Shortcuts, half assed attempts, quit and runs, whatever.... those do harm not only to the person who didn't give it their best effort, but also to all the others waiting in the wings. you know what I mean?
 
I fully understand. I'm going to give it 3 months. From what I've read, that is the standard time to "wait and see". There is a local pharmacy that told me they have experience compounding LDN but I'd really like to order from Skip's. They seem to have a good track record for quality.

If you have any other suggestions or insight let me know :)
 
I personally think LDN should be the very first medication to be used for most cases of Crohn's.

There are no medications that works any more reliably than LDN. In another words, any and all of them fail on a regular basis. It is a crap shoot no matter what you use. So why not use the one that has the least risk, and side effects, along with protection from other autoimmune diseases and cancer?

I cannot think of any logical reason not to use it first, from a patients point of view, unless it is some special situation that calls for something else.

I have used LDN and while I am not sure if it worked or not, it still would be my first choice as a treatment. Unfortunately I got several fistulas all of a sudden out of the blue, so now I am on Azathioprine.

I think the fistulas were a result of a Mycoplasma Pnuemonia infection, but I cannot know that for certain, so I had to move on to Aza, in case I am wrong.

Good Luck with the LDN. Just remember the doctor has reasons for what they prescribe and what they do not. The reasons do not always have anything to do with what they would use themselves, or what is in your best interest.

Dan
 
I saw another doctor today. I was supposed to be seeing my GP but her schedule changed so I saw her PA. The PA didn't want to prescribe it either. I was able to answer all her questions and had the trial pdf printed out for her to see that it was actually legit.

She also said she could lose her license. What is with these people?

I'm starting to feel like an idiot for even asking for this drug and afraid that I'll get a reputation for wanting "unorthodox" treatment and be shunned from the mainstream medical community... which sucks because I am also trying to find work in the medical field as a coder.

Hopefully I'm just being paranoid. I do think it was stupid of me to ask someone that is not known to prescribe it and I'm embarrassed because I got a little visibly emotional when she said no.

I'm just so frustrated :(
 
Wishing you luck!!!

I'm afraid I'm going to find myself in the same predicament as you... before my son's begins on meds (current GI thinking metho), I would like my son to try LDN (he's currently only on EN and 'stable' but with indications that his crohns may be becoming active again). But, current ped GI said no to LDN. We are in the process of transferring to an adult GI but I'm not confident that the new one will agree to LDN (big IBD clinic, big hospital, lots of procedures and policies, etc.). Tried to call one compounding pharmacy in our area but they would not give me any names of GIs prescribing...

I'm feeling like you... like I'm looking for some illegal, unorthodox, way-out-there alternative treatment! :voodoo:

I guess all we can do is keep trying. :( Wishing you lots of luck again!!! :D
 
Jeez... I'm sorry you're frustrated. I felt sort of the same way the first time I asked, and even though I didn't get a hard "no," I suspect that will probably be the answer the next time I see my doctor.

That said, you should not feel like you're an idiot, and try your best not to feel paranoid. And don't feel embarrassed!! Easier said than done, perhaps, but I look at it this way: If a person in the medical community (such as a nurse, some sort of hospital staff, or otherwise) decides to treat one of their own symptoms with, say, accupuncture or something, they aren't going to be shunned by the medical community, right? Try to think of it that way. LDN is not mainstream, but there's some demonstrable effectiveness to it. The NIH doesn't usually fund studies on therapies that are known to be smoke and mirrors.

LDN is in a very weird spot right now, and depending who you talk to you're going to find a few people who champion it, a few more people who are very skeptical and/or who have never heard of it, and not a lot of people in between. I suspect that will change over time one way or the other, as it either takes hold within the medical community or is somehow disproven as an effective treatment. The problem is that nobody knows how long it's going to take for one or the other to happen, and that doesn't help people who may be in need of that sort of treatment right away.

Keep your head up. And in the meantime, don't be afraid to keep searching if you want to give it a try. I'm not actively searching right now but I still want to give it a shot, and if I was in worse shape health-wise, you bet your ass I'd be bugging every doctor I could find.
 
I am not promoting this option, but I'm just curious--has anyone who is having difficulty obtaining LDN looked into ordering from an internet pharmacy? I started doing some research into LDN and I found a website that talks about how to compound it yourself using the 50mg dosage and also discusses what online pharmacies to order from (they are overseas pharmacies that don't require prescriptions). Obviously, this is not as legitimite as working with a doc to get it and I'm not necessarily advocating it. I just want to know if anyone thinks it would be really dangerous to go that route.
 
I've considered it. The only trepidation I have is the purity of the drug--if it is going to be coming from a reputable source. Hopefully it doesn't come to that.
 
You can find posts on other forums about people who went this route with success, however, obtaining a prescription for which you aren't prescribed--regardless of the fact that it is a non-narcotic (anti-narcotic, even)--is illegal to varying degrees, depending on local laws (usually a serious misdemeanor, but maybe worse/less).

It seems authorities would be wasteing their time prosecuting someone for LDN illegally, given the flood of illegal opiate/anxiety/mood modulating drugs. Most states have compassionate exemptions for novel treatments that haven't been approved yet locally, but fighting/arguing something like that in court would be an expensive and time intensive endeavor.

Who knows the purity of foreign/domestic pharmaceuticals? I mean, these companies pretty much operate with impunity. The low dosage would probably safeguard against any problematic doses of whatever impurities may or may not be present. Who knows? I don't want to give the impression that I have any certainty on the health hazards of going this route.

I'm pretty ignorant how one goes about dissolving the coating while assuring an accurate dose in a distilled water base. Just some food for thought...
 
The MR enterography only showed minor inflammation and it is at the end of the small intestine. Aside from that, I had a bit of a scare and thought the nurse I spoke with said I had lesions on my liver. It turns out that the report actually stated "no suspicious lesions". I do, however, have some cysts on my liver. I was told they are normal and I was probably born with them.

I just got a letter from my doctor restating what I heard from the nurse and my doctor said to continue with my current medication (Pentasa). So, that's good. I'm glad she's not still trying to push Humira on me.

So... Hooray! No scar tissue :biggrin:

I'm sticking with my diet. I started drinking black coffee again after going off it for a few months. Things are moving along beautifully and I've got more energy. I am supposed to get my first iron infusion this afternoon. Hopefully that helps with the energy level too.

The MRI results make me feel better about the wait I have until I get to see the doctor that will possibly prescribe my LDN.
 
I never had my iron infusion because my iron levels actually went up on their own. I suspect it is because of the Orgain and all the baby spinach salads that I have for dinner. My B12 level has actually fallen dramatically. It was over 1000 back in February. In June, it was like 600. In July it had fallen more to 500. The hematologist didn't even discuss that with me and I didn't realize it had fallen so much until I got home and compared all of my test results.

I called them the next day and they weren't concerned with the dramatic drop. I'm frustrated because obviously I can't supplement this because it doesn't look like I'm even absorbing B12 anymore.

They said it wasn't low enough to get B12 shots and my insurance probably wouldn't pay for it if I did get the shot. The doctor told me to come back in 6 months to check my iron again but I'm going back sooner to have them check my B12.

My theory is that back in February, I was still using cannabis. I had been using it steadily for several months. In May, I stopped using the cannabis and my health declined a good bit. I think stopping the cannabis threw me into a flare and caused my inflammation to come back in the TI.

I am feeling better now. I think the additional changes in my diet can be attributed to that.

I know this is a thread about LDN but I figured I would just update it anyway.
 
I wonder about my B12, as it was in the 430s at last check -- I've been supplementing for a little while now, but I'm wondering when to get tested in order to see if I'm absorbing it at all.

While we're hijacking the thread, what are you sticking to as far as diet is concerned? Glad to hear your iron levels are up.
 
I think being that low is teetering on a fine line. If it has been more than a month or two I would have them check it again. There is a B12 poll around here somewhere that David made with a link to a paper that states if you are that low it's about a 50% chance that you are deficient.

At first, my diet was mainly a banana, peanut butter, a little 85% dark chocolate, and coconut water for breakfast, then Orgain for lunch, snack, and dinner. I did that for about a month.

Now, my breakfast is the same except for I've added black coffee, I have Orgain for lunch and snack, and for dinner I have some organic protein and a baby spinach salad with olive oil and vinegar. Everything I consume is organic and I try to drink a lot of water.
 
Sounds rigorous! But that Orgain sounds like something I should maybe look into. I miss black coffee, but I've been having iced green tea on occasion.

Anyways, I'll ask about getting my levels tested again at my next appointment at the end of the month. Maybe I'll get to ask again about LDN as well (oh yeah, bringin' it back!), so I'll keep you posted. You do the same!
 
I will! :biggrin:

If you try out the Orgain, don't order it from their web site! It's super expensive there. Can get it much cheaper at Whole Foods and Wegmans.

...and here is the link to that B12 poll.
 
Off topic again, but I got some Orgain at Rite-Aid and it's pretty good! Definitely seems (and tastes) like it's better than Ensure, so the extra cost is probably worth it for me.

Let's see if this tagging thing works... Hey David, I know you've been looking into finding decent, readily available nutrition drinks. If you haven't checked it out already, size it up and maybe bring it up in the Enteral Nutrition forum if it sounds like something you'd back. It's gluten free, but not dairy free (whey protein, I think), so it wouldn't work for everyone.
 
JDTM said:
Off topic again, but I got some Orgain at Rite-Aid and it's pretty good! Definitely seems (and tastes) like it's better than Ensure, so the extra cost is probably worth it for me.

...It's gluten free, but not dairy free (whey protein, I think), so it wouldn't work for everyone.
Click to expand...


Awesome!

Whey protein is good for the gut.

What flavor did you get?
 
CONGRATS!!! I'm so happy for you!!! Who'd you get it from?

I met up with my GI last week, and because I'm doing OK, I'm going to stay on Pentasa and see how I fare. BUT, she did say that she reviewed the LDN literature and she'd be willing to prescribe it to me in the future if I want to. Super pumped about even having the option.

Please please PLEASE keep us updated on how you do on LDN!
 
Thanks, y'all :biggrin:

That's awesome, Jesse!

I will keep this thread updated.

I got it from a DO about an hour away. He was already familiar with it and said that he prescribes it to a lot of people with autoimmune disease and cancer.

I'm going to use Skip's Pharmacy in Florida.

I'm actually headed to Florida for a week to hang out with my brother and sister and will start the LDN when I get back home.
 
10:30 PM took my first dose of LDN along with 6mg of Melatonin. I laid in bed watching youtube videos on my phone until 1:00 AM.

I slept VERY LIGHTLY. It was a weird sleep. Much like the sleep I had whenever I took Tramadol. I checked the clock at 5:50 AM and just stayed awake. I'm alert, not sleepy. A little foggy. I had breakfast with black coffee.

This is what I am taking in hopes it will help my Crohn's:

Entocort

Naltrexone 4.5mg - I typically take it between 9pm and 10pm

Astaxanthin 4mg

Curcumin 800mg taken with fat for proper absorption

Boswellia 800mg

Neptune Krill Oil 1g


Melatonin 6mg @ bedtime


L-Glutamine 2g

I also take vitamin D3 5,000 IU every other day and a B Complex vitamin daily.

My diet is really simple but I do not feel deprived. I avoid bread and refined sugar. I eat plenty of organic raw fruits and vegetables and only consume organic meats. I still drink Orgain. On the weekends, I typically just drink Orgain to give my body a rest. When it is affordable, I'd like to incorporate green juices to my weekends.

So, that's what I'm doing. I tweak things occasionally but this all pretty much stays the same.
 
Last edited:
Wow, I love how you're going about this! And thank you for sharing all your reasoning.

Are you monitoring your disease status with any blood or stool tests?

How much vitamin B6 does your B complex contain?
 
Also, just to give us an idea, how were you feeling overall before starting LDN? Things under control, in general? Or not so much? I just want some frame of reference if/when I try LDN. I'm on Pentasa as well, but not nearly as many supplements. (Might have to try some of those in the future, though -- thanks for posting the links to those studies!)
 
David - I have not had any blood or stool tests recently but I'm scheduled to see my GI doc in November. I'll request some tests. I know my B12 has trended downward since February. In February it was over 1000 but the last time it was checked in June and July(I think) it was 600 something, then 500 something. I tried to get B12 shots but the hematology nurse said that it's not low enough. I was pretty annoyed with that because it's obviously not being properly absorbed. I put in a call to them yesterday about having it checked again to see what it's doing. I'll hear back about that next week.

My B Complex has 25mg of B6 (as pyridoxine HCI) and 10mg as pyridoxal 5-phosphate. I've read that too much B6 can build up and be toxic. Is 25mg too much or too little? When I was looking for melatonin to buy, I noticed a lot of melatonin is sold with some B6 in it. I ended up finding melatonin from NOW that does not add B6.

As far as testing goes, are there any you recommend I request?

JDTM - Before starting LDN, I was feeling fine overall. I'm pretty sure I still had minor inflammation in the TI that was shown on my MR enterography a couple months ago. I never have problems with pain but sometimes I notice a little "off" or slightly tender feeling in the TI region. My BM's are totally awesome, regular, and normal.
 
25mg of B6 is over 1000% of your RDA. As you've read, too much B6 can lead to a host of problems. Will that happen to you? I don't know. I don't yet know B6 well enough to comment on the chances of you experiencing toxicity, but I think it's something you should keep in mind and maybe research a bit more since you obviously do a lot of that :). If you want to keep taking it and you can't find any concrete data on toxicity, I'd request testing to make sure your levels don't go too high.

As for the blood and stool testing I mentioned, what I was alluding to was tests like CRP, ESR, fecal calprotectin, fecal lactoferrin, etc to find your baseline levels so you can gauge improvement, lack of improvement, or worsening disease state on a quantitative level in addition to how you feel.

I'm really excited about how you're treating your Crohn's. I think if I had Crohn's rather than Lymphocytic Colitis I'd do many of the same things so I'm praying it works for you.
 
Actually, it looks like you should be fine with the B6. From the Linus Pauling Institute which I trust a lot:

Because adverse effects have only been documented from vitamin B6 supplements and never from food sources, safety concerning only the supplemental form of vitamin B6 (pyridoxine) is discussed. Although vitamin B6 is a water-soluble vitamin and is excreted in the urine, long-term supplementation with very high doses of pyridoxine may result in painful neurological symptoms known as sensory neuropathy. Symptoms include pain and numbness of the extremities and in severe cases, difficulty walking. Sensory neuropathy typically develops at doses of pyridoxine in excess of 1,000 mg per day. However, there have been a few case reports of individuals who developed sensory neuropathies at doses of less than 500 mg daily over a period of months. Yet, none of the studies in which an objective neurological examination was performed reported evidence of sensory nerve damage at intakes below 200 mg pyridoxine daily (24). To prevent sensory neuropathy in virtually all individuals, the Food and Nutrition Board of the Institute of Medicine set the tolerable upper intake level (UL) for pyridoxine at 100 mg/day for adults (see table below) (7). Because placebo-controlled studies have generally failed to show therapeutic benefits of high doses of pyridoxine, there is little reason to exceed the UL of 100 mg/day.
Click to expand...
Sorry for the false alarm :)
 
Oh, good. No worries! :biggrin:

My GI doc is pretty good at ordering blood tests but she's never had me do any tests via stool sample. I'll ask her about those.

I actually saw a really cool snippet in Wired magazine about a "GI effects" stool test from a company called Metametrix. The information it gets from your stool is super interesting! Stuff like predominant bacteria analysis, yeasts/fungi, and drug resistance. I imagine it's very expensive though. It would be awesome if my insurance would pay for it.
 
Took melatonin before bed and when I started to nod off, I took my LDN. I fell asleep super fast and suddenly woke up a few hours later. I was pretty wide awake and felt weird and tingly. Almost a buzzed sensation. I stayed up for a little bit then tried to sleep. I slept deeper than the night before and had a few CRAZY dreams. The first dream I had to wake myself up because it was out of control with wackiness.

I feel hungover today. My body is still tingly.

The TI area doesn't have the "off", tender feeling like it has lately.

When I was awakened by the LDN last night, I got on my phone searching for the best times to take it. There is so much mixed info. Yes, it works when you dose in the morning but not if you have MS! Only if you have Crohn's! No, it doesn't work as well if you dose in the morning! So many adamant people about both sides of the coin that it's hard to glean what is the best thing to do.

I've ultimately decided to just keep trying the night dosing thing and hope I stop feeling spaced out, buzzed, and AWAKE.

If anyone else has some insight, I'd love to hear it.
 
I had my stool tested using Metametrix lab. I will say that it does check for quite a few things, but I was a bit skeptical of some of their findings as was my GI doc.

Metametrix lab found my stool was positive for H-pylori( a bacteria that lives in the stomach and can possibly cause stomach ulcers). This my GI said was probably reliable. He said if they found the DNA of this bacteria in the stool, then you are infected with it.

Here is where it gets skeptical, It also said I was positive for yeast overgrowth( but it would not say which type of yeast, it just said "taxonomy unavailable". Also said I was positive for a parasite but again it said it did not know what type of parasite"taxonomy unavailable".

I just also read on my results that my lactoferrin was high 3.7, I think normal is 3.1. Not sure what to think. It is a very expensive test, and I am not sure how reliable it is all around.
















ctrl z said:
Oh, good. No worries! :biggrin:

My GI doc is pretty good at ordering blood tests but she's never had me do any tests via stool sample. I'll ask her about those.

I actually saw a really cool snippet in Wired magazine about a "GI effects" stool test from a company called Metametrix. The information it gets from your stool is super interesting! Stuff like predominant bacteria analysis, yeasts/fungi, and drug resistance. I imagine it's very expensive though. It would be awesome if my insurance would pay for it.
Click to expand...
 
I know that H pylori can be treated via anti-biotics, but which ones.. and what effects it may have on you other than treating H pylori I don't know. As for yeast overgrowth, that may indicate you have SIBO as part/parcel of everything else. I've heard (read on here) that there is another test for it.. endoscopically... but it is only about 50% effective, and the 'experts' only know about 1/2 the types/names/genus of the flora/fauna that live inside of us. Again... broad spectrum, long term anti-biotics might 'cure' the overgrowth, BUT... anti-biotics kills both good N bad, and supposedly the bad bounce back faster. Whenever my kids (when they were young) were given anti-biotics they would afterward develop very bad diarrhea... followed by diaper rash ( I said they were young at the time). You paid for the analysis, guess you have to decide whether it is worth your time, money, any associated risks.. to go after these secondary issues.

As for the parasite... we have untold quantities of them within us... Growing up on the farm, every spring we would be doused with worm medicine. I think they called it that just from the taste... tasted like it was made from worms. Never seemed to hurt any of us. I have no idea if it ever did us any good. And, when dealing with Crohns, worms may actually be doing us some good. Hey, maybe taking that stuff when I was young is how I got Crohns. Wouldn't that be a kick in the head. Or, the lower right quadrant...
 
ctrl z, hang in there with the night dosing. The side effects go away, at least they did with Chloe. I don't know how it will be for you but she only felt the effects for a few weeks.
 
I slept just fine last night so I guess the insomnia part is out of the way now. I still feel kind of strange mentally (I can't explain it), nothing bad physically. Still tingly and I have a little "worn out" feeling. If anything major happens one way or the other I'll update again.
 
Just wanted to to update again and not leave a cliffhanger on how I said I felt strange mentally.

I feel fine. I would venture to say that I feel great.

I slept just fine last night and I felt better waking up in the morning than I have in a very long time.

I have energy and feel a general sense of well-being.

I won't have any imaging studies again for a while so when those happen I'll post before/after pictures.
 
I instinctively went to click the "like" button when I read this. There isn't one, but you'll just have to imagine that I liked it. ;)
 
Just thought I would threadjack and update about my B12 level.

It had dropped dramatically from 1403 in February down to 810 in June, then down more to 647 in August.

Those drops freaked me out so I was tested again on the 15th and it had gone back up to 1624.

I chewed up B12 lozenges like candy for a while. I guess it looks like my TI is doing what it's supposed to be doing.

Still doing great with the LDN. I have a lot of energy :biggrin:
 
Thanks so much for updating your thread!

My son had his first apptmt with an adult GI a few days ago... out of nowhere, my son's currently only on maintenance EN, GI said he wants to put him on remicade :eek: BUT, will give a prescription for LDN if we want to try it! (But, he doesn't think it will be effective.) So, we're just going to have an MRE done and decide (I'm definitely leaning towards trying the LDN but will have to be realistic re what the MRE shows :()

Anyway, am very grateful for your updates! Hope it continues to work well for you! :D
 
Thank you :biggrin:

That's awesome his new GI is willing to let you try it out... Good luck with the MRE!
 
We are almost 5 months into LDN. No more side effects, sleeping like a normal teenage boy (a lot), feeling great, color is great. He had labs, fecal calprotectin in June before starting LDN on July 1 and all came back with no inflammation markers and in normal range (he still is not gaining weight, but he just doesn't eat) His doctor was the one that suggested LDN (feel more lucky to have him every day). Had a check up the first of the month to see how LDN was working he decided not to run anymore labs based on his normal BM's, color looks good and he had even grown an inch in the few months. He will be doing a colonoscopy and labs in June to make sure LDN is doing its job but so far we are looking good.
I know his GI was attending a conference this month with some other GI's and he was definitely going to talk with the other GI's about it. Keep us informed, my husbands GI refuses, at this point, to prescribe it. We are hoping to bring all my son's records especially a "good" colonoscopy after his appt as ammo to get him to prescribe it.
Thanks for the update.
 
That's awesome about your son... and some things I have heard and experienced is that sometimes LDN can make you not very hungry. Sort of like it can suppress the appetite a bit.

My GI wouldn't prescribe it either. I called a local compounding pharmacy to see if any doctors in the area prescribe. I ended up going an hour away to a DO. It was worth it. He gave me the Rx for 100 pills plus 2 refills. I'm filling them at Skip's in Boca Raton. I just scanned the Rx and emailed it to them. They confirmed the Rx and shipped it out the next day.
 
I have an appointment with my GI today.

She doesn't know that I've been taking LDN. The last time I saw her, she said no to the LDN but claimed she wouldn't have a problem with me taking it. Her last instructions were to continue with the Pentasa (since I didn't want to go on Humira).

Hopefully she hasn't changed her tune.
 
I'm anxious to hear your results! Chloe went for a follow up with bloodwork last week and ill hear from the doc soon and post the results.
 
I wish I didn't tell her about the LDN. She just blew it off. Even though I told her that I have more energy than I've had in years.

She also told me Pentasa only works because of placebo.

She was about to send me on my way without ordering any kind of tests so, I asked her if we could at least check my CRP. So, she gave me orders for CRP and sed rate.

I asked her when I would be eligible to have another colonoscopy since I just had one and she said they don't scope people that are doing well. Is it just wishful thinking on my part that this disease should be monitored with diagnostic tests like colonoscopies? How else will I know how things are doing in there if I can't see it? My CRP could be perfect but I could still have inflammation.

On my way out, I signed a paper to have them send all of my records to me. I'm terrified that she put down that I'm on 50mg of Naltrexone instead of 4.5 mg.

I don't need that following me around.

Can other doctors order colonoscopies?

Do I HAVE to get a GI to do it?

I'm considering going to a integrative medicine doctor instead. I don't know what to do but I do know as long as I'm with my current doctor it will be her way or the highway and I don't appreciate feeling trapped.
 
Last edited:
If you're doing well I can understand much less frequent colonoscopies, but not doing them at all? Doesn't really jive with me.
 
Yeah. Me either.

I will just keep doing what I've been doing and sometime in 2014 if I'm still doing good see about getting a colonoscopy ordered from someone.

She's lied to me a few times and I don't really trust her so I guess I just need to find someone else.
 
It's really bizarre behaviour. I mean, no one who has prepped for one would 'volunteer' to be scoped UNLESS there was a valid reason... and wanting conclusive evidence that LDN either is or isn't helping is totally valid. Maybe she doesn't want incontrovertible proof that the LDN does work... As for Pentasa (or any of the 5-ASA drugs) I understand that the current 'official' thinking is that there is absolutely no clinical evidence it helps Crohns.
I think it is akin to the old "take 2 Aspirins and call me in the morning" punchline about any typical doctor... GI's just opt for it. Kneejerk reaction... or.. it probably won't hurt and it might just help... or.. what if this patient sees another GI for a 2nd opinion AND they learn I haven't prescribed any 5-ASA. I dunno. I think treating (or attempting to) Crohns with 5-ASA is like hunting submarines with depth charges when you don't have any sonar. I'm not sure what the long term risks are when taking 5-ASA. Anyone know?

Final thought... with this disease... you need a GI that you can place your trust in. It's literally your life is in their hands. That may sound overstated... what I'm trying to say is... everyone with this disease WANTS their life back. I read that your current GI does not care whether you achieve that or not. So, is it really an overstatement, or a truth?
 
I think it's valid for sure... because if it doesn't work then I will try something else. It's almost like she would rather I fail so she can say "I told you so". I don't know. I shouldn't speculate about what she would do but she really doesn't seem to care about what I care about and I don't want to spend the rest of my life trying to find a doctor that isn't going to be a total jerk. Is there some sort of directory for non-jerk doctors? Is there a check-list for finding a doctor that won't completely dismiss you? I wish! It would certainly save a lot of time and money.
 
I've made an appointment with an integrative medicine doctor that prescribes LDN. It will be good to work with someone that is on the same page with me as far LDN and alternative treatments are concerned. He's booked out til April though but I'm doing good so I can wait. His practice is very nice with an in-house laboratory. I'm really excited to be his patient :smile:

I haven't gone to get my blood work done for the CRP and Sed Rate yet. I'll do that tomorrow and update whenever I get the results.
 
I'm also on LDN. My doctor said he mentioned LDN at a convention to other GI's and what they said was not too favorable. Mainly stating that there is too much unknown. I so wish this wasn't so political. What someone said about docs and peer pressure to conform to the same typical regimens seems spot on.
 
ctrl z said:
10:30 PM took my first dose of LDN along with 6mg of Melatonin. I laid in bed watching youtube videos on my phone until 1:00 AM.

I slept VERY LIGHTLY. It was a weird sleep. Much like the sleep I had whenever I took Tramadol. I checked the clock at 5:50 AM and just stayed awake. I'm alert, not sleepy. A little foggy. I had breakfast with black coffee.

This is what I am taking in hopes it will help my Crohn's:

Pentasa 4g

Naltrexone 4.5mg - I'm going to take it before bed time for a while and see how it goes.

Resveratrol 100mg


Curcumin (BCM-95 formulation) 800mg taken with fat for proper absorption

Boswellia 800mg

Neptune Krill Oil 1g


Melatonin 6mg @ bedtime


L-Glutamine 2g

I also take vitamin D3 5,000 IU every other day and a B Complex vitamin daily.

My diet is really simple but I do not feel deprived. I avoid bread and refined sugar. I eat plenty of organic raw fruits and vegetables and only consume organic meats. I still drink Orgain. On the weekends, I typically just drink Orgain to give my body a rest. When it is affordable, I'd like to incorporate green juices to my weekends.

So, that's what I'm doing. I tweak things occasionally but this all pretty much stays the same.
Click to expand...

Wow. I really like this setup. I might incorporate some of this into my regimen. Thanks!
 
Bond007 said:
I'm also on LDN. My doctor said he mentioned LDN at a convention to other GI's and what they said was not too favorable. Mainly stating that there is too much unknown. I so wish this wasn't so political. What someone said about docs and peer pressure to conform to the same typical regimens seems spot on.
Click to expand...

My son's GI said he was going to mention it at a convention he was attending as well, can't wait to hear how that went over. I know that several other kids are taking LDN as well at their practice and they were the ones that suggested it for Jack and brought me out the articles on it when they wanted to prescribe it for him. I had of course already seen them and hadn't suggested wanting to try it due to all the troubles everyone had getting it and he was doing pretty good on the aza (not perfect but nearly there). So glad and lucky that our only pediatric GI's in town seem to be ahead of the curve.

My husband's GI however is not and when he brought up he would like to try it, he was told no. We haven't given up however and will be bringing all Jack's progress including what I'm sure will be a great scope (next June) to his appt. and demanding we try.

Wish it was a standard option in therapies but hopefully we can keep ticking away one person at a time and more GI's will take notice.
 
If he says no in June (to your husband) don't forget that you can get it from doctors other than GI's! :biggrin:

I'm guessing that you are wanting your GI to be on board with it. I wanted mine to be. The compounding pharmacy I called for doctors that prescribe it said that no GI in the area is prescribing it. :frown: It was all neurologists and DO's here and I live in an extremely populated area in the Northeast USA. It's like healthcare central over here. Maybe you will have better luck than me. I hope so!
 
I'm hoping that my son's GI will be willing to talk to him about his experience/success. We are such a small community they all know each other. My husband has been seeing him for 12 years and my mother for 15 (for IBS) we really do like him and I think it was more he just doesn't know anything about it - well we are happy to educate him as much as we can. I also thinking my husband is not pushing as hard as he could because the aza has worked so well for him but as he sees as we both see how much better Jack is feeling I think he is getting to the point he would really like to try as well.
I'm glad you found somebody to prescribe it, I do know of another doctor who will prescribe it from another friend who has UC and has searched everywhere in town for it (although she has not told her GI she has started it) I think she is only in week 3 at this point.
 
If you haven't gotten a scope done yet, I would talk to your GP and ask for them to refer you to a general surgeon. GI was booked 3 months out when I needed my first one for confirmation of my condition, that the doc went with a surgeon to do it and I was in within a week.
 
We are lucky to live in a small town. There is only one pediatric gi group in town so most we have to wait its a week we are waiting until June just so he will have been on LDN for a year and he can look and see how he is doing at that point and it will be 3 1/2 -4 years since his last scope. Great idea about using a surgeon though I don't think I would have ever thought of that
 
I just got a letter from my GI saying that my CRP and Sed Rate were "normal". I have no idea what the exact numbers are. I'm calling to request a copy of the results.
 
My GI almost never scopes me UNLESS I'm doing well, he wants baselines, not confirmations of inflammation (unless it goes on long enough to need checking out.) That whole thing sounds super fishy to me.

No, I doubt it's to avoid documenting the success of LDN. That's a little too cloak and dagger.
 
Every time it gets checked I've been using cannabis and it comes out normal. I haven't used cannabis in months (just LDN) so, that's a good sign. One time it did come up elevated and that was last fall. I went on a popcorn eating spree for like three days and ended up in the ER. :biggrin:
 
It's good to have "clean" blood results, but they don't prove you don't have any inflammation at all, as you probably know. A routine scope is still a good idea. My doctor expects me to get one annually remission or not. I don't, but he expects it. ;-)
 
Yeah. I don't trust my (former) GI. I think this disease should be monitored no matter what and she's just being difficult because I'm not doing what she wants me to do. I want to know if what I am doing is working. I WILL get my scope.
 
Hope you get your scope CtrlZ. I know Jack's GI wants one done June/July after a year on LDN to make sure all is good, he doesn't trust bloodwork alone but at the same time he doesn't want to do one just because... He doesn't want to put Jack (and me) through it more than necessary. It's not so much the scopes but the prep that was the nightmare. Both of us crying and yelling at each other, had to call in reinforcements. My 60+ mother and 70+ mother-in-law played drinking games with him. It will have been 3 years when he has his next one. Hopefully we wont have as much trouble with prep this next time as he knows what to expect and knows he just has to do it.
 
Thanks!

Yeah the prep is the worst part. I know the first time I did it, I wanted to cry! Blech. :frown:

Great idea with the drinking game :biggrin:
 
ctrl z said:
Every time it gets checked I've been using cannabis and it comes out normal.
Click to expand...

Glad i'm not the only one :wink:

I'm really interested in LDN as well. Might have to ask my GI about it next time....although I'm sure he'll deny me. I told him about my cannabis use and he said "it's an effective anti-inflammatory, but I can't prescribe it. Sorry." :rof:

Good thing I have another doc that believes in it.

Anyways...how would you compare cannabis vs LDN as treatment for IBD? Just curious, I know you have experience with both. I read a post from August that said you experienced a flare up after halting cannabis use...that also happened with me. So I'm back on it.

I'd love to hear your opinion...:D
 
Ha! That's awesome your doctor believes in cannabis as an effective anti-inflammatory.

Well, at this point I'm more experienced with cannabis than the LDN :biggrin:

I'm not sure how long it takes cannabis to reduce inflammation but it provides me immediate relief whereas it takes a while for LDN to make the body heal itself. I did have immediate side-benefits from the LDN--energy and my depression lifted. Prior to LDN, I always felt like I had this heavy fog weighing me down--mentally and physically. I've also experienced a little pain relief. I had mild, fleeting discomfort in the TI region and a few days of LDN the discomfort became even more minimal to rarely occurring.

I think LDN and cannabis would be very complimentary to each other and I wish I could use both right now.

I got my medical records the other day and every time I was using cannabis and had some sort of imaging done, there was no evidence of inflammation. One colonoscopy with no inflammation, and one small bowel follow-through another year with no sign of inflammation.

As for LDN, I'm still a noob and I have a feeling I will discover new things it's helped with for months to come.

I think that LDN can't do the work by itself and you need to do the best you can to optimize your health--such as a healthy diet free of junk foods devoid of nutritional benefit and the addition of physical activity. I would also recommend not being a social drinker. I think it would negate any good work the LDN has done. I wouldn't see anything wrong with an occasional glass of red wine but no overdoing it and no smoking! :smile:
 
ctrl z said:
Ha! That's awesome your doctor believes in cannabis as an effective anti-inflammatory.

Well, at this point I'm more experienced with cannabis than the LDN :biggrin:

I'm not sure how long it takes cannabis to reduce inflammation but it provides me immediate relief whereas it takes a while for LDN to make the body heal itself. I did have immediate side-benefits from the LDN--energy and my depression lifted. Prior to LDN, I always felt like I had this heavy fog weighing me down--mentally and physically. I've also experienced a little pain relief. I had mild, fleeting discomfort in the TI region and a few days of LDN the discomfort became even more minimal to rarely occurring.

I think LDN and cannabis would be very complimentary to each other and I wish I could use both right now.

I got my medical records the other day and every time I was using cannabis and had some sort of imaging done, there was no evidence of inflammation. One colonoscopy with no inflammation, and one small bowel follow-through another year with no sign of inflammation.

As for LDN, I'm still a noob and I have a feeling I will discover new things it's helped with for months to come.

I think that LDN can't do the work by itself and you need to do the best you can to optimize your health--such as a healthy diet free of junk foods devoid of nutritional benefit and the addition of physical activity. I would also recommend not being a social drinker. I think it would negate any good work the LDN has done. I wouldn't see anything wrong with an occasional glass of red wine but no overdoing it and no smoking! :smile:
Click to expand...

Thanks for the response, ctrl z :D

I think they would compliment each other well too....I'll have to bring some evidence of LDN working with IBD to my next GI appointment. I'm really intrigued with this stuff.

My second and third scope I was using cannabis for months before hand and had no inflammation...my most recent scope I was only using cannabis for a week before hand and had inflammation. I'm no doctor, but I think it takes at least a month or two of consistent use to reduce inflammation. One thing is for sure though, it provides immediate relief. Maybe not immediate inflammation relief, but relief nonetheless.

Good health to you :biggrin:
 
Thanks! Same to you :biggrin:

...and good luck with your GI. It seems pretty rare to find one that won't totally blow off LDN. Ideally, mine would be on board with what I'm doing but she's not so it is what it is. There are other ways to obtain LDN. Maybe since your GI believes in cannabis as an alternative therapy he will be more open to prescribing the LDN. Be sure to print out the Penn State trial and take it along with you.
 
ctrl z said:
Thanks! Same to you :biggrin:

...and good luck with your GI. It seems pretty rare to find one that won't totally blow off LDN. Ideally, mine would be on board with what I'm doing but she's not so it is what it is. There are other ways to obtain LDN. Maybe since your GI believes in cannabis as an alternative therapy he will be more open to prescribing the LDN. Be sure to print out the Penn State trial and take it along with you.
Click to expand...

Thanks for the PDF! I'll make sure to print it out and bring it to my next appointment monday :ysmile:

My GI doesn't necessarily believe in alternative therapy, he just admitted that it could help. He's just another drone doctor that is trained to prescribe immuno-suppressants, steroids and remicade (been on all, they failed). I'll be following up with his nurse practitioner so maybe she'll be more open to the whole LDN thing...I wont get my hopes up though :eek:
 
Sed rate and CRP results came in the mail:

Sed rate is 8 (normal range 0-20)
CRP is .4 (normal range <0.7)
 
Last edited:
What are the norm. ranges listed on the lab sheet because they can differ and the units of measure can differ also.

Edit: For instance, earlier this year C's labwork showed his CRP was .94 and and was high because the range was 0-0.32 mg/dL
 
Oops! I edited it to reflect what the normal ranges are.

I wonder if I could get the test results from whenever I've been to the ER? I'll have to figure that one out.
 
Great news CtrlZ. If you always go the same hospital, I know here they have it all in the computer and can pull it right up, I would imagine most of them are the same and could pull up your history every time you've been in.
 
I found in my records from the GI where she said my CRP was high in the ER the last time I went but there is no number :frown:

I'll go to the hospital and see if they will pull up those numbers for me. Thanks for the suggestion!
 
ctrl z, I don't think you would have any issues getting your previous labs but regardless I think the current ones look really great.
 
Just a quick update.

I'm still feeling fine... more energy than I had pre-LDN. The insane, shoot off into space energy is gone though. For a while, I thought it was because maybe I had a candida problem or maybe the LDN stopped working, but now I think I just got used to the high energy feeling from the LDN. Another thing I've considered is maybe my metabolism is too slow to clear the 4.5mg fast enough.

I'm considering trying to make it myself and experiment with dosing. I'd like to try out 3mg for a while and see how that goes.

Until then, to raise my metabolism I've started taking a spoon full of coconut oil in the mornings and doing the p90x workout. The workout is really hard and I can't do everything but I try and I still get a great workout.

If I start making the LDN myself I'll update if I feel differently taking a lower dose.
 
So, according to the nurse of another GI in town, my GI was right in saying they don't scope people that are doing well. She said it was not the standard of care. So, I guess the **** has to hit the fan for any scoping to be done. I don't agree with that but coming from two people from two different health networks, I guess I'll have to accept it.

I was talking to the nurse because she is in charge of the TSO study site in my town. My town isn't listed on the clinicaltrials.gov site for the study. I found it through the facebook group set up by the pharmaceutical company.

Anyway, like LDN, TSO is supposed to be safe and like LDN, it is something I believe in. If there wasn't a trial site in my town I wouldn't try to participate but since there is, I will gladly donate my body to science for this particular cause :p

I don't know if they will have me get off LDN for the study but I will if they need me to. If so, then I'll resume LDN therapy once the trial is over.
 
My apologies. I should have added links.

TSO is Trichuris Suis Ova (pig whipworm egg).

It's a study for helminthic therapy.

http://clinicaltrials.gov/ct2/show/NCT01576471

There was also an article in men's health about helminthic therapy:

The chief benefit, the proponents of helminthic therapy claim, is an optimized immune system—one that parasitic worms help train, exercise, and prevent from going haywire by way of a variety of dampening mechanisms and secreted compounds that researchers are just beginning to identify.

Read more at Men's Health: http://www.menshealth.com/health/immune-system-worms#ixzz2HVNGzG3L
Click to expand...

So, with my limited knowledge, it appears that both LDN and TSO will do the same thing, just in different ways.
 
Interesting that they're both approaching Crohn's in the same way, albeit differently and both still get results!

Out of interest, my sleeping patterns pretty awful and i'm often going to bed at 3-4 in the morning. Should I still be taking my LDN at 9pmish?
 
Last edited:

Similar threads

M
Daily tablespoon of olive oil to improve digestion?
Replies
0
Views
368
mriguySeattle
M
H
Tests Come Back Normal, but Still Diagnosed with Crohn's. Is this normal?
Replies
21
Views
3K
ronroush7
ronroush7
C
Atypical Crohns
Replies
2
Views
1K
Chrissie47
C
N
Never Give Up - Keep Trying
Replies
0
Views
238
Northwinds
N
A
Chronic Elevated CRP
Replies
2
Views
681
amyruns79
A

Latest posts

Back
Top