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Crohn's Disease Forum

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Jmrogers4 said:
Thanks vongoh, I just had a look at the absorbplus I may have to compare to my son's current drinks as it is believe it or not cheaper. When he is on them exclusive it is 8 cans a day and there are 24 cans in a case at $160/case. So roughly $160 every 3 days or about $1600 a month.
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Wow! I tub of Absorb Plus is ~$60.00. Assuming a 100% enteric diet - only Absorb Plus and supplements (Omega-3 or other oils to boost the caloric intake and anti-inflammatory action) - @ 4 shakes a day a tub lasts me about 3 days.

So about $120.00 a week x 4 = $480.00 per month means about $500 a mo. give or take (extra tubs, shipping etc). The great thing about it is that, when I start going into remission and adding solid food - I start with mainly broth, soups, eggs and other soft protein / mineral sources - you can taper off using it and leave the rest for reserve.

At the very least I think you should try some, ask him what flavors he likes - better to get all four flavors if you can, cause trust me: they taste really good but after a few weeks of just that, any flavoring can get pretty old lol. He's going to want the variety.
 
inanitsch said:
vongoh, thanks. We are using an extact 4-1 CBD-THC ratio, any advice on this treatment would be appreciated. I suppose I should join the mmj forum to see what other folks are using.
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Sure - I am using 1:1 ratio and - from my limited experience with it - it works great. I don't want to go too off topic in this thread though, this is about LDN.
 
We have an appointment at the Whitaker Wellness Institute in Newport Beach on Monday. Mucho expensive, but I will do everything possible to help my kid get better. Thanks for your help.
 
I found a willing prescribing doctor in 2006 (in austin, tx) whose practice was Chelation therapy. Search for a chelation doctor at abcmt.org. I sent the doctor what I could find on LDN and his nurse called me back and said he was willing to prescribe it, he himself uses it now to avoid the allergy issues that he had. The deal was that I had pay out of pocket for visits and he does not deal with insurance justifications for LDN.

I also had to know the dosing and filler that I wanted. Expect no help from this type doctor if there are complications. Also, if you tell your GI that you are on LDN, then his liability insurance policy probably tells him that he will have to drop you as a patient.

Back in 2006 there were no published studies, but now there are some phase II trials to show a potential doctor.
 
Hi Daybreak, I have a list of "LDN friendly" docs and I do have some in Michigan. either pm me or e-mail me at [email protected] and I'll send you what I have. I am not sure where any of these locations are in the state of Michigan but perhaps there will be one near you.
 
Hello All, I am interested in starting LDN. I found a doc who will prescribe. I'm also on Cimzia, which, so far, isn't working but MIGHT start working in another week or two (I've only been on it for 3 and 1/2 weeks). Trouble is, I'm also on 40 mgs of Prednisone and when I taper off even a little, I get very, very sick. I know I can't start the LDN until I'm on 10 mgs of Prednisone or less, so I'm kind of stuck. I can't start the LDN until my flare calms down, but nothing I've tried has worked. Has anyone else dealt with this? Any thoughts/advice?

Many thanks,

Isabelle
 
According to my sons GI you can do LDN while on more then 10mg of Pred. According to him the 10mg was for the study as it is not really a theraputic dose anymore at that amount so would not interfer with study results. It is more a don't know which one is doing the job.
My son was also just on a 5 day pred blast for a current flare, his GI feels that the LDN has worked so well for him we just need to get things under control again so the LDN can keep him there at least that is what we are hoping for.
 
I think, if you have just started Cimzia, you should give it time before making any changes. When your doctor prescribed it, did he/she give you an estimated timeframe for it to show results? My wild guess (I'm not a doctor, and no training whatsoever, and no experience with Cimzia) is that 3 month (90 day) trial period is probably standard. You might want to check with the Cimzia threads to see if others with experience can give you some idea of how long it took to work for them. Bear in mind, everyone is different, and individual cases cover the spectrum in severity, intensity, complications...

I'm no expert on anything... and my knowledge of how LDN works is partly anecdotal, with some parts being little more than folklore, and some taken from posts, articles, etc., from doctors, scientists, or just other sufferers of this disease. There are very few 'real' experts in LDN, and the interaction between it and other medications. My own personal take is that... the healthier, more robust ones immune system is, the better that LDN seems to work. When I first started on it, if I got flu, or bad cold, anything that would put a strain on my immune system, I would experience some minor flaring. However, as soon as the cold/flu whatever passed, my flare would go away very fast. As years passed, these became fewer and fewer... until now, if I catch a bug, it doesn't affect my Crohns at all. The reason I raise this.. and type so much extra reading..is that I don't know what the effect of large doses of Pred or Cimzia might have on your immune system. It probably won't affect the LDN... but if the LDN works better with a strong immune system... well, you can see there is a potential for troubles in that case.

If neither high doses of Pred or Cimzia suppresses the immune system, it shouldn't make a difference. I just don't have the knowledge or expertise to make that assumption. And if a doctor is mistaken, (about the mechanics of how LDN works its magic) then this may not be your best choice. Thing is... a doctor MAY look at the drug desk reference and there would be no red flags raised by taking both... without stopping to consider if what one drug does to the body might offset the potential benefits of the other. That is the big conundrum. I'm not saying it would, I'm saying I don't know, and I'm not entirely sure the 'experts' do either.
 
Hi all! I'd love to join in. I was on LDN for about 6 months of pure heaven. The medicine paired with the SCd diet really seemed to do the trick. Then out of nowhere things got bad again. I recently got off the LDN for two weeks in hopes to jump start things again. So far 10 days in at 1.5 and no luck. Praying for success again!
 
Hey, Kev and others who are in remission -

I have had to cut out vegetables and fruits pretty much altogether (I am juicing to get the nutrients) while I've been ill, and I sometimes feel as if I can't stand eating white food anymore. Rice, gluten-free white bread, white crackers . . . I want to yell and stamp my feet and eat a HUGE salad full of all the colorful vegetables I am craving. I AM BORED of everything I can safely eat right now. I just look in my cupboards and fridge and want to cry.

Are you able to eat pretty much what you want now that you are in remission? Can you eat raw vegetables? Is there hope that I can expand my diet again once I get this under control?
 
Short answer is yes, I can. But, the damage (scar tissue) from my disease is permanent. So, gassy veggies... too much roughage... things with loads of pulp or fiber increase my pain levels. I have even on occasion eaten chilli. Just paid the pain price.

Now, pain levels aside, there are no other issues with what I eat. No big C, no big D. But I'm 3 months shy of 6 years on LDN, so I've had a lot of time for intestinal healing, you know?
 
Kev,

Thanks so much for your input. I never got as sick as you and don't have a lot of scar tissue, so hopefully I will get at least as healthy as you are now! I will keep up my vigilance and keep using LDN and have great expectations that someday (even if it's a couple of years away) I will be able to widen my safe food choices again.

As long as I'm posting, I might as well list some of the positive changes I'm noticing (after about six weeks on LDN):

* My energy level is overall higher. I still have low points where I have to cancel everything and rest, but they are less frequent and I'm able to do more most of the time.

* My libido has come roaring back - husband is thrilled and so am I! For some reason, I didn't expect this - I didn't think about how digestive problems really affect everything, not just the intestinal tract. Part of this is probably because of the following bullet point, as well.

* My mood is definitely more positive. I didn't realize that I was probably suffering from depression until the sun started peeking through the clouds and I thought, "Hey! I haven't felt this positive for a LONG time!"

* Clearer thinking. Makes sense that if I am healthier overall, I will think and problem-solve more effectively.

* I have HOPE that I am getting better instead of just falling apart more. Hope is a big deal to me.

* The shallow sleep thing caused by LDN is still there, but the constant dreaming and feeling of being not rested (possibly from dreaming SO MUCH) has decreased a lot. I still dream every night, but they are not as invasive, if that makes sense. They're just dreams again. And I am feeling much less tired because sleep feels like rebooting again.

THANKS to all of you who have paved the path in front of me to be able to use LDN and benefit from it. Thanks for all the wisdom posted on this forum!
 
Wisdom??? Oh, that must be directed to everyone else. I say that only partly in jest, as I neglected to say that back when I first started on LDN, AND for quite some time after... I stuck with a strict diet prescribed by a nutritionist who specialized in IBD. With time I slowly, gradually started experimenting... and now I eat normally. (within reason).

As for scar tissue... I posted pics of mine... and the scarring is pretty dramatic. But, my case is pretty rare... 3 months after my last resection, a scope showed no sign of IBD, and no scar tissue except for surgical scars. 3 months later, and it all was involved with the exception of the surgical area. BUT (and it is a big but) I had both Crohns and UC. The scar tissue I have now... the big dramatic stuff.. is from the Crohns. Everything that was UC has cleared up without scars. A real blessing. My point is... scar tissue due to Crohns... regardless of where it is... has a tremendous growth rate, in small areas. Unfortunately it won't go away... sooooo... although LDN can stop this disease, you may have some issues... poor absorption of certain things... cramps/pains as fecal matter pass the scarred areas... softer foods, less fiber can help. I mean, if you don't have them now... then you may have caught it in time. I don't want to rain on your parade, but neither do I want to exaggerate what LDN can do. You know what I mean?

As for sleeping... I can't offer an opinion. I sleep like a log. Always have. Elephants could dance beside my bed and it wouldn't wake me. And my dream experience was different. I only had a few of the 'vivid' dreams... beautiful, exquisitely 'detailed' realistic dreams.
Haven't had any in years... SIGH!!!!! So, my wild guess is that the sleep disruptions and frequent dreams will fade for you like my wonderful dreams faded for me. At least I hope so. Worst case scenario... you are experiencing the side effect. Frequent dreams. In the overall scheme of things... as side effects go... it shouldn't put you in the hospital.
 
I am following this thread with such interest. My question is why do you think LDN sometimes makes the symptoms worse before they get better? How many weeks before improvement is obvious? What was your first indication you were getting better? Does it work as well for patients on the UC/ Crohns spectrum?
My 20 yr old daughter started LDN 4.5 mg 4 nights ago and at the time she was lowering her pred. and feeling less well than when her dose was higher. She is having more pain issues so I just ramped it from 10 to 12 mg. of pred.
Her MMJ lozenges seem to help for a few hours with the pain.
When she was diagnosed end of May the inflamation was in her colon with a small amount in small intestine. She has changed her diet to avoid wheat, sugar, and takes Lactaid pills when eating milk. She is on a low residue diet and has gained back all the weight she lost from the disease and her week in the hospital.
 
Searchingforhealth, keep us posted. We got our LDN yesterday. But this doc said to start slow 1 mg for a week, and then go up 1 mg each week. I'm afraid of the getting worse before getting better part. Especially when they are finally feeling better. I haven't looked up lozenges yet, but we are using extracts. Oh and glad your daughter has gained the weight back. Mine has too, and then some with the pred. But she has ALWAYS been underweight so we are really enjoying that part.
 
Inanitsch, we started on 1.5 for a few days and since she didn't have any sleep issues went to 3 mg for a few night. I thought the goal was to get to 4.5 mg since that is the dose used in the Penn study. Did your prescribing doctor also have that amount as the goal but just to start slow? What was the reason for starting so slow? Was it an issue of side effects? I think there are other side effects beside sleep issues but I will look them up. We are looking to get MMJ oil, it is legal here in Ca for medicine.I like the lozenges because they don't make her feel high. They are 8 THC and 20 CBD. W
 
My doctor had me start at 1.5 then 3 and finally 4.5 mg. it took approximately 6 weeks to get to the full dose. She did this as I am very sensitive to any change so she wanted to do it slowly. I did get worse before starting to get better with each increase, even when I went from 3-1.5 mg capsules to 1-4.5 capsule. I don't fully understand the whole reasoning behind the feeling worse before you feel better, so maybe someone more scientific could answer that one for you.
 
Here are my pet theories behind this apparently common phenomon...feeling worse before getting better... but keep in mind that I'm no doctor, no training whatsoever.

To treat with traditional meds, the aim is to suppress symptoms. Usually by suppressing the immune system. When you switch to LDN, the drugs used to suppress go away. With them out of the picture, symptoms worsen. LDN triggers a rebound effect, and at this stage your body starts to fight the disease. So, in a sense, your body is now at war with Crohns. So, you've got this increase in symptoms because the old drugs are gone... and you've got your immune system suddenly fighting on your side for a change.
Between these two... I think it is 'natural' you would feel worse... until the tide starts to turn. Then slowly, you begin to feel better... its usually a very gradual process, but my experience was that it was like a snowball rolling downhill... it kept getting better, and better... and all it took was one safe little pill every night at bedtime. Does that make sense to anyone else?
 
Searchingforhealth, I don't recall why she said to start slow. But yes the hope was to get to 4.5. As far as the cannabis we are using extracts, one is mixed with grape seed oil, and it's 24-1 CBD-THC, and the other is in alcohol at a 4-1 ration. The last one doesn't taste good, so I squirt in a capsule. She says she can't feel a difference in her mood. but I would like to know more about the oil and how we can get it. We are kind of freaking out here, this new doc switched us from 5mg of pred, to 10 mg of cortef, we started yesterday and my daughter started feeling like she was getting an adrenal rush, and then her temp went up to 102, and we just went of flagyl on Monday. I'll be calling the doc soon, her temp is down to right under 100.
 
Zagon interview four years ago: search for "mary bradley zagon" in google, there is a link to the hour long interview, and then there is a link to a link in another LDN forum which gives a summary, if you don't have the hour to listen. Zagon talks about dosing alternate days if LDN does not work or quits working. He refers to the need for nite time dosing as a myth that perhaps he started, he then says they have not seen any diff in morning vs nite time in humans or in their laboratory animals.
 
searchingforhealth, I did finally message you, hope it went through. we started LDN last night only 1 mg. Hope all goes well.
 
We are back to square 1. My daughter is having a bloody flare and GI said to raise pred back up to 60 mg. she is also very sick with a cough and cold. We are stopping the LDN until she is stabilized and if we try again it will be on 1.5 for awhile to see how it goes. Very depressing after she was doing so well and lowering her meds.
 
Although this is disapointing hang in there. LDN is very slow working and once she is low on the pred and starts back on the LDN hopefully she will start to see improvement. My son had to do the same and has now been back on LDN for a couple of months and is doing well. I have been on LDN for 6 months and after 23 years am seeing some remarkable results but extremely slow. This forum really helps to understand the process and gives great support. If I didn't have this I probably would have stopped taking it as I definitely got worse before starting to get better and improved very slowly, sometimes you wonder if its working at all but it is. I very much appreciate the people ie Kev who have gotten better or are in remission continuing to post as that gives us newbies much needed support. We all just want to be better and resume a normal life but paying it forward with info and support is definitely great Karma. So thank you.
 
Sorry to hear about the setback. My guess would be that the bug she has knocked out her immune system. For whatever reason, in the early stages.. LDN seems dependant on a healthy, robust immune system. Which is perhaps why it gets worse before better as well. So, any stubborn bug (cold, flu, whatever) that overtaxes the immune system, or a dose of anti-biotics... anything along those lines, and you can expect a flare. In my experience, these became fewer and farther between over the span of time. Hoping thats' the situation in your future.
 
Hello All, so my daughter is on night 6 tonight of LDN, she is also tapering off the pred. We have not done this before. She started 40 mg pred for 2 weeks, then tapered down by 5 mgs every 5 days. At 5 mg we are going down 1 mg every 3 days. She was really tired yesterday at 4 mg, and today at 3mgs really, really tired. Is that just how it goes, or should we go a little slower.
 
There have been no studies (at least that is the info I was given years ago) on tapering. Pred made me feel invincable... coming off it was a nightmare every time, and I even tried slow tapering by .5 mg.. meant using 1/2 a pill... which tastes terrible. So, if the initial reaction your daughter is experiencing is that she is feeling worse, it may just be the tapering process. Pred is a double edged sword... on it you feel great, then you start the tapering process... hoping and praying it ... 'shocked' your disease asleep.. but typically (at least in my case) the disease inevitably rebounds.. and the disappointment is hard to deal with... and on top of that... the rebound disease takes a physical toll. If a person could go on pred and stay on it... that would be great... but the side effects makes it too risky to remain on. At best, it is a short term, stop gap, bridge solution.
 
For my daughter, Pred is definitely a double edged sword, without it, when she is flaring she would die from blood loss and fluid loss. She doesn't feel great on Pred and she hates what it does to her body, fat face and acne etc. During this bad flare she is having Rick Simpson Hash oil mixed with coconut oil, which we will continue. It can help her to heal as she tapers the Pred. I wish we had used it when she first was hospitalized in May but that's the last thing they would have suggested at the hospital. When she is much better we will try LDN again but not at full strength for awhile. In an article I just read, Dr Zargon said it can be taken every other day. She can't afford another flare, she has lost so much weight and energy.
Does anyone know of a food supplement like Ensure that doesn't come in a can? I am avoiding canned foods due to the lead and PBA contamination.
 
searchingforhealth we just started absorp plus. We got it online, I think at listentoyourgut.com. We are going in for more HBOT therapy tomorrow and friday, my daughters belly is starting to swell up, I'm not sure if it's because we are lowering the pred, or the LDN, we are supposed to start 2mg tonight, might stay at 1. I hate this disease.
 
I so agree with you about this disease!! I also just ordered Absorb Plus this morning:) I think it will help put some of the weight back on My daughter and give her some energy.
The fact that sometimes one gets worse before they get better from the LDN is worrysome. My daughter certainly got worse, but she might have anyway from lowering her pred dose. I am hoping that the Rick Simpson Cannabis oil will heal her gut when she starts to lower her pred dose this time. I think it is stopping the D.
I mentioned the HBOT to my daughter and she said she would not want to stay in a small enclosed space for that long. Is your daughter fine with it?
The more I read on the forum about the side effects of the Biologics the worse they seem. All the GI's are pushing them as the only choice in meds! Keep me posted as to your daughter' s progress on LDN. Sending healthy healing thoughts your way!
 
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searchingforhealth, my daughter was fine with being in the HBOT chamber last week, they are see through, they have a tv on the outside and you can watch a movie or listen to music. I'm concerned about the swelling of her belly, I didn't get a hold of the doc today, wondering if we should up the pred a smidge.....hopefully tomorrow things will look up, but we did start the absorp plus today, and she's not in pain.
 
I wanted to give a hopeful and encouraging report to those of you still waiting for LDN to make a difference . . .

As of a week and a half ago, I have been able to eat raw apples again. Over the last week I have been experimenting with cooked vegetables, which for the last six months have been too much for me, and they seem to be sitting well. I have been adding spices back into my diet a little at a time (my husband and I are big fans of cayenne pepper and chili powder and I was missing them greatly), and in small amounts, they seem to be fine.

I did have to cut green leafy things (parsley, kale, chard) out of my daily fresh juice altogether, though . . . I don't think I'll be eating a fresh veggie salad anytime soon, but that's okay because I am able to add back in cooked vegetables and apples. I am a really happy girl this week!!!

Hang in there!
 
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So happy for you ChristieJP! Unfortunately my daughter is back in the hospital with what turns out to be C-Diff. Has anyone had a bout with C-Diff? She's on IV fluids which is reviving her and they will start her on vancomycin. We will have to try LDN at a later time.
 
We just had a bout of c-diff over the summer, which is what I think set off his current flare although the addition of Pentasa and EEN seem to be making a huge difference and hoping that once we are done with the EEN and have added food back in 3 weeks we will be back in remission. :)
 
Jmrogers4, thank you for your reply. My daughter is on IV fluids and being given Vancomycin which she says hurts her stomach even more. I think I'll ask them to give her a probiotic. She is in constant pain and having frequent bloody stool. I'm so glad we tested her for C-Diff!
I am glad your son is doing well on Remicade, I am terrified to give her any of the Biologics.
 
No Remicade for him, Just LDN and Pentasa :). We did probiotics while he was on the antibiotics as well although he didn't take them at the same time as his antibiotic. He took them a couple hours after his morning antibiotic dose.
Once the antibiotics start to work the pain and stools will hopefully decrease they did with us but it was several days. He took Levsin at the time to help with the stomach cramping/pain. Hope things settle down quickly for her.
 
Okay - another question . . .

For you women Crohnies, I have had a ton of UTIs over the last few months since I started LDN. That was about the time my Crohn's symptoms were worst, and diarrhea means more likelihood of UTIs, so it's not necessarily the LDN that's influencing this, but those symptoms aren't bothering me much anymore.

I found this article that states that UTIs are a common side-effect of LDN. A number of articles said the same thing.

Can anyone think of a theory why LDN might lead to increased UTIs? And what do you think; will that liklihood decrease after a while?
 
I can't fathom any possible correlation. I don't know if UTI's are more common in women, but this old fellow didn't have any issues. I wonder... totally a wild assed guess.. if as the LDN kicks in, and the body starts to clean house... if there are bits and pieces of various discarded 'bad bugs' within the urine???? Extremely far fetched theory.
 
Oh, and for anyone else suffering frequent UTIs maybe related to LDN, here's a great natural option: D-Mannose supplements. I will be adding it to my daily supplementation regimin!

Thanks for your thoughts, Kev. I was thinking that as our immune systems settle down and normalize after starting LDN, perhaps we are more vulnerable to infections in general.
 
How did the kids get c-diff? Is it just from overuse of antibiotics, or are they just more prone to it. sorry searchingforhealth you guys are in the hospital. We will start 3 mg of LDN tonight. We are also doing HBOT a couple of times a week. I can't say we can see a difference anywhere, and still trying mmj. Hoping for a cure!
 
ChristieJP said:
Okay - another question . . .

For you women Crohnies, I have had a ton of UTIs over the last few months since I started LDN. That was about the time my Crohn's symptoms were worst, and diarrhea means more likelihood of UTIs, so it's not necessarily the LDN that's influencing this, but those symptoms aren't bothering me much anymore.

I found this article that states that UTIs are a common side-effect of LDN. A number of articles said the same thing.

Can anyone think of a theory why LDN might lead to increased UTIs? And what do you think; will that liklihood decrease after a while?
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Hi,
My Grace had bladder problems.
Do they do a culture on your urine to confirm a UTI?
They always said Grace had UTI's but her cultures don't grow it.
Now we know she has bladder inflammation.
 
inanitsch said:
How did the kids get c-diff? Is it just from overuse of antibiotics, or are they just more prone to it. sorry searchingforhealth you guys are in the hospital. We will start 3 mg of LDN tonight. We are also doing HBOT a couple of times a week. I can't say we can see a difference anywhere, and still trying mmj. Hoping for a cure!
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I would say in our case it was antibiotics. He has not had any antibiotics for years and years and got a bug bite that developed into cellulitis that led to antibiotics and then C-diff into flare.
 
Update on daughter's c-diff
GI doc at hospital said it was a difficult to treat strain and added a Flagyl to the vancomycin! Yesterday she was having bloody stool every hour, said it looked like a murder scene in the bathroom :///
Today doc said her white blood count is improving, down to 800 from 1400. I am grateful for any improvement!
I don't know if her starting LDN has any correlation with her c-diff, maybe this was the original cause of her crohns/colitis.
 
Searchingforhealth said:
Update on daughter's c-diff
GI doc at hospital said it was a difficult to treat strain and added a Flagyl to the vancomycin! Yesterday she was having bloody stool every hour, said it looked like a murder scene in the bathroom :///
Today doc said her white blood count is improving, down to 800 from 1400. I am grateful for any improvement!
I don't know if her starting LDN has any correlation with her c-diff, maybe this was the original cause of her crohns/colitis].
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I truly believe (of course I can't prove it) that c diff is the trigger that set Grace's colitis in motion. She's never been the same.:(
 
C-diff... as in diffucile (spelling... my Latin is rusty). Very difficult to treat. Anti-biotics is a double edged sword... hopefully it eliminates the c-diff... problem is that it wipes out the pro-biotics.. the good gut flora... and that knocks the stuffing out of the immune system. Some folks have resorted to Fecal Transplants... it might be a 'better' option. I wouldn't be shocked to see anti-biotics knock LDN off the tracks for a while afterwards. Doctors offices, clinics, hospitals... these are breeding grounds for C-diff. Even hotel rooms, public washrooms, payphones, schools, restaurants... any places where large numbers of people gather, mingle... it is widespread and very opportunistic.
 
My son (12yrs) was dx with Crohn's in the terminal ileum 2 years ago and has been taking Apriso, Bentyl, Caltrate, multivitamins, and the occasional supplemental shake and has been great...no symptoms other than slowed growth...but even that has been getting better...I should note that his presentation has been slowed growth, oral, and externally manifested in with swollen penile tissue. In June he began having horrible abdominal pain, but all blood work was normal...we managed his pain...increased his Apriso to 3 pills a day...and he was fine...then 2 weeks ago he developed Thrush all over his mouth and tongue...with little ulcerations on his tongue and the angular chelitis came back in the corners of his mouth....he has been treated with Diflucan and Mary's Magic mouth wash...that cleared...blood work still within normal range...the Dr ordered a Calpro stool test and it came back at 665...so we are now going in for endo/colon scopes asap...I know we are headed for a medication change...the options are frightening to me and my husband....LDN seems to have less side effects, and long-term side effects than the others...why are doctors so reluctant to prescribe it for Crohn's disease....also....what are the main side-effects, or dangers of taking LDN? Would you consider it for your child, or yourself if you were in my son's situation, or is this a drug you try after all of the others? Just looking for opinions....thoughts etc...If it helps to know my son weighs 78lbs.

Thank you
Farran7 (12 yr son dx in 2011 with Crohn's)
 
Hi farran7, my son was diagnosed this year with crohns aged 12 also. We have just got him in remission :) at the moment he is on imuran, entocort and nexium but the thing that pushed him into remission was his liquid diet(een ) for the past 5 weeks. I have recently spoken to his specialist about getting him onto LDN ( and expected to fight for it ) but he said he will back me up with this and we will sort it out soon after he's looked into it a bit more :) needless to say I am ecstatic and can only hope this will work for my son as it has for so many others. I figure there is no harm in trying this medication as there is no major side affects. At the momen he has just pushed his weight up another kilo( 31.3kg) and has grown 1/2 a inch. We start introducing foods again in another 3 weeks but will stay 40 percent drinks and hopefully 60 percent food. This is thd biggest relief we have had since this all started :) push for the LDN abd read as much as possible ( I actually gave our specialist a book " the promise of LDN " to read and he was through a couple of chapters when we last spoke .
Good luck with everything and I hope you get to try the LDN , Wendy
 
I started LDN in November, 2007. Here it is October, 2013. I've taken 4.5 mg nightly every nite, it's kept my disease at bay, and the only side effect I personally ever had were some wonderful dreams back in the early days. As long as it is fresh and properly compounded, I've had no issues. So, my prolonged use may allay any fears of issues over time... I've had none. There are folks in Norway and Ireland who've been on it for over a decade... same thing. The issue with doctors being reluctant is perhaps due to the fact that FDA approval is still pending (Phase III ETA is 2014) and there are no pharmaceutical companies pushing, promoting it. It is legal and ethical to prescribe it.
 
I'm now on 4,5 mg LDN since three days ago, can't say it's working for me.
Started on 1,5 mg, then 3 mg and 3,75 mg.
Actually don't feel very well, and my crohns is really active now.

I'm also tapering down the pred, now on 5 mg.. I think my doctor will give up LDN if I don't get better really quick.
Have been on LDN for more than three months, haven't seen any positives with the LDN.

I think the next medicine will be Tysabri. :(
Have been on Imuran and Remicade with no effect...
WHY dosen't any medicine works for me?
 
At the 4.5 mg dose, I would expect LDN not to show any improvements for 2 months, AND would expect that before improving, you would feel much, much worse at the start.

3 days at 4.5 mg... I would not expect to see any results. And I wouldn't count any of the time at the lower doses. You have to take enough of the drug to trigger the rebound effect... until you do, then I wouldn't expect it to have any beneficial effect on your disease. If you or your doctor are expecting overnight results, LDN won't do that.
 
Hi Farran my son is 14 and has been on LDN for a little over a year and it has been great. We had scopes done after 8 months and scopes and labs were normal. Couple of things to remember it takes a long time to work, doesn't mean you won't have another flare. Jack had one recently which we have treated by adding Pentasa and doing a course of EEN. Based on what he was like before LDN and what the scopes and labs looked like and how well the LDN worked for him, his words were - We know the LDN worked, let's tweak it and see if we can get him back into remission and allow the LDN to keep him there.
While the consensus is it is safe and many like Kev have been on it for many years. We are not aware of everything in pediatrics and it does cross the brain/blood barrier and works with endorphins. There has not been enough research done and we are not positive how it will affect developing brains.
 
Dear all,

I have no experience with LDN apart from the many articles that I have read and the many pharmacists and doctors I have spoken to in regard to treating my father who has RA.

I have read many of the posts here and have read some posts where people have said they have gotten worse after taking LDN and some people have said that they haven't seen much of an effect from LDN or that it takes months to work.

For those people whose crohn's disease has gotten worse after taking LDN, I believe this might be related to the fact that such people are taking immunosuppressing medications like predisone whilst also taking LDN. My understanding of how LDN works for people with autoimmune diseases is that it increases the production of endorphins, which has a result of boosting one's immune system, which results in one's immune system being better able to distinguish between "self" and "non-self". Accordingly, when one takes immunosuppressing medication together with LDN, you have one drug which is suppressing the immune system and one drug which is trying to boost the immune system, so neither drug is working effectively and for this reason I believe people's autoimmune symptoms get worse. This opinion is based on logical reasoning rather than any medical knowledge.

Why do some people have instant beneficial effects using LDN whilst others take many months to see any effect? I believe the answer to this is related to the level of one's immune system and the time it takes to boost one's immune system to a level where one's immune system can properly distinguish between "self" and "non-self". Factors which effect how quickly the immune system is boosted, depend on:

(1) how old the person is - age effects one's ability to produce endorphins and consequently effects the levels of immunity as the older you get the less endorphins you produce naturally. So the older you are the more likely it is that it will take longer for LDN to have an effect.
(2) What other medication you are taking and how long you have been on such medication - immunosuppressant as discussed above will lengthen the time for LDN to be effective, additionally even after one has stopped taking immunosuppressant drugs, they can remain in one's system for many months which may have a delaying effect in the benefits of LDN therapy
(3) Stress - stress has a negative effect on the immune system, so high stress events like going through a divorce can effect how quickly or how beneficial LDN is. Meditation should be adopted to minimise stress and boost effects of LDN. Gingseng, chocolate, sex, laughing and doing things you enjoy also boost endorphins and the immune system and accordingly have utility in enhancing the beneficial effects of LDN therapy.

I hope the above provides some help. I have been looking into LDN therapy for my father who suffers from rheumatoid arthritis (RA).

For those looking for doctors that are prescribing LDN, speak to people in forums like these, but also and what I have done is to call up local compounding pharmacies and ask them if they make LDN and if so which doctors prescribe it. Every compounding pharmacy I have called has confirmed that they frequently make LDN and generally are very helpful in providing a list of doctors which prescribe LDN.

Please make sure you see a reputable doctor about LDN therapy... as there are some sharks out there looking to exploit people's desperation for a magical cure. Trust your instincts and don't be afraid to ask people for advice!

I hope all of this helps! Take care : )
 
I also should say that LDN dosage also has an effect on how effective LDN is. Different people have different sensitivities to LDN and accordingly require higher or lower dosages for LDN therapy to have a beneficial effect.
 
I started LDN at age 52 1/2.... so I guess my chances of it working were pretty slim.
I wasn't taking anything other than 5-ASA... I'd been taking that for years with no sign of it benefiting me in any way... I remained on it more or less to reduce my Dr's risk of any criticism for having a patient try LDN while not on ANY approved IBD medication. I've seen it written that doctors specializing in LDN conclude it (LDN) can be used with up to 10mg pred. Perhaps others. I went solely with 4.5 mg of LDN. It didn't work right away... and I did feel much worse before things turned around. I kept and posted on this forum a diary of my experiences way back then. Anyone who wants to read it is most welcome. I don't know if I present as a typical case... but I've heard others who've had a rough initial go. As for dosage... except for pediatric trials where dosage was based on a formula taking into account a childs weight... the adult studies used 4.5 mg as the 'default'... just enough to trigger the so called rebound effect. I've read some 'annecdotal' postings of people who've tried higher doses and failed, and some who have tried lower doses with little or no evidence of success. My personal take on this is.... if you've no absolute reason for altering the dosage that was successfully used in the trials, or by others such as myself... then it would be absolutely ludicrous to tamper with it. The whole point behind LDN is to take as little as needed to achieve the effect, (but the caveat there is "as needed") so that the potential for side effects is minimized. I mean... if you opt to take 1.5 mg... you logically should have even less risk of any side effects.... but if it isn't enough to achieve AND sustain benefits, you are wasting both your time and an LDN prescription (and these latter can be very hard to come by). The other caveat with LDN is that it treats an amazing variety of diseases... and I foolishly expected (ASSumed) it had the same success rate across the board. I told someone I knew about LDN (they suffer from fibromyalgia) and I thought it would work as well. The sad news is that, although it works with that disease... as one doctor described it.. it is a 50/50 treatment. 50% of the people who try it will experience only 50% of the pain they otherwise would. Trying to keep track of how it works for IBD, what the success rate is... how many trials, etc.. is pretty hard. It isn't an overly researched medication.
I love to promote LDN... sort of a pay it forward mentality going on.. but I try not to get too gungho... try not to muddy the waters.. because this is after all, the Crohns Forum.
 
Daughter has been in the hospital for 9 days and still bloody stools but according to daily lab tests her CRP is close to normal. She is still getting Flagyl and Vancomysn for her C-diff and the latest labs came back negative. She has lost much weight and finally they are counting calories and I am supplementing their full liquid diet with my home cooking. Yesterday I made a salmon bisque that she loved (600 calories!) and she gained 2 lbs since yesterday.
She is on 40 mg IV prednisone. This will be switched to oral and slowly tapered.
The GI doctor at hospital is starting to push hard for a biologic to be added.
I want to consider a fecal transplant and one GI said he is willing in a few months when she is stable and healing.
I want to give LDN another go but if there is a chance of another flare, she will end up back in the hospital! Everything I read about Biologics scares me!! Help,
I am so scared for her and want a cure for her Crohns/ colitis
 
I know that the biologics sound scary but I've had (almost) nothing but great results with them. Remicade saved me several years back. I eventually became allergic to it but now I'm on Cimzia and feeling great, although it took about a month to kick in. I haven't had a single side effect and almost never get sick. I don't know where I'd be without biologics.
 
what effect does LDN have on one's endorphins...I understand that is crosses the blood/brain barrier....does it have any long term ill effects? I don't want to put a 12 year old something that could forever alter his endorphin response.
 
Farran7, the ped study was so small at Penn and of course short that I dont think those numbers are out.

Meds that cross the blood brain barrier concern me too as our kids brains are still growing, so I've put LDN in my back pocket for when C is an adult.

You know maybe you could contact Penn St where they did the studies and get some answers, it may alleviate your fears.
 
I recall looking at the numbers from the ped study... I think one of the parents linked to a pre-release of it some time back... everyone was waiting to see how it would pan out.

It wouldn't surprise me if the numbers in the ped study were small. How many parents would be lining up to offer up their kids as guinea pigs???? I believe the 1st adult trial was only 27 patients ... mostly because there is no one with deep pockets interested in funding big studies. One of the prime reasons I originally played lab rat (or guinea pig) in the first place was that... if my kids contracted this disease... I wanted safer options for them. And I was willing to risk whatever the drug might do to me... on the chance it would work. I've taken approximately 2150 pills... at 4.5 mg. Absolutely no sign of any adverse effects. I'm no authority, no medical training whatsoever. The only logic I have to offer is that... if you look at the 'KNOWN' risks of the various medications, and your aim is to minimize the potential risk to your loved ones... then the lowest dose med with the fewest known side effects seems to be the logical, rational choice. I would believe a group (the researchers behind these studies) who were looking to provide better choices (as opposed to pharmaceutical researchers looking for a way to make their company big profits...) would NOT overlook or understate any potential or possible risk to the patient.
 
The university set it up to be small, it was a small phase II study. The parameters, participant numbers, and type of trial are all affected by the grant money, universities involved, number of researchers, etc. they have to work with.

I don't think the majority of it had to do with parents not willing to sign their kids up to be guinea pigs. When every drug has failed your child or their quality of life is nil you look for clinical trials in hopes of finding your kid's miracle drug.

As far as results due to LDN crossing the blood/brain barrier and what long term affect it may have on developing brains, I don't think it is known yet.

That doesn't mean it isn't a choice for some people or for parents searching for a med for their kid, drugs like biologics had side effects that were not known until they did observational studies after the med was being prescribed.
 
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Yes Clash, just unknown especially in pediatric. Still something I wonder and watch for any thing different and then it's always is this happening because of LDN.
Will it keep the kiddos in remission as long as someone like Kev or will their fluctuating growth hormones etc. throw everything off. Wish I had the crystal ball for answers.
 
Hey guys, just started on ldn today and really hoping for results. Have had enough of doctors messing me about and taken matters into my own hands! Really hope it was the right thing to do.

Doc has started me on 1mg for a month then he'll review the dose.
 
Hi all, I just wanted to post this, on Oct 7th, my daughter's crp was 59.2 (norm is 0-2.5), sed rate 44 (norm 0-20), today's results were crp 6 and sed rate 18. We spent the whole week at the Whitaker Wellness Institute so she could sit in the HBOT chamber all 5 days, making it a total of 10 days, several weeks ago they had us start MethylSulfonylmethane, a highly bioavailable curcumin, and Permaclear: a combo of L-glutamine, N-Accetylglucosamine, Lactobacillus sporongenes, saccharomyces Boulardi, ginger and quercetin, as well as LDN starting 1mg for the first week, and going up 1 mg per week, we just started 4mg on Wednesday night. And we finally finished the pred on Wednesday. We are shocked and relieved at these numbers. Was it the HBOT, LDN, or new supplements I don't know. We feel pretty confident we can at least start back with school and see how things go. We are on the high end of this roller coaster, hope it last for a long time.
 
inanitsch said:
Hi all, I just wanted to post this, on Oct 7th, my daughter's crp was 59.2 (norm is 0-2.5), sed rate 44 (norm 0-20), today's results were crp 6 and sed rate 18. We spent the whole week at the Whitaker Wellness Institute so she could sit in the HBOT chamber all 5 days, making it a total of 10 days, several weeks ago they had us start MethylSulfonylmethane, a highly bioavailable curcumin, and Permaclear: a combo of L-glutamine, N-Accetylglucosamine, Lactobacillus sporongenes, saccharomyces Boulardi, ginger and quercetin, as well as LDN starting 1mg for the first week, and going up 1 mg per week, we just started 4mg on Wednesday night. And we finally finished the pred on Wednesday. We are shocked and relieved at these numbers. Was it the HBOT, LDN, or new supplements I don't know. We feel pretty confident we can at least start back with school and see how things go. We are on the high end of this roller coaster, hope it last for a long time.
Click to expand...

Wow, are you pretty positive it was the LDN doing the work or do you think it was the steroids?
 
HI Lsgs, It couldn't have been the steroids, because she was taking the steroids at the time of the first test, she was tapering off from 40mgs starting in August, when we got down to around 5mg we knew something wasn't right, so after a lot of research and finding this LDN forum we fled to the wellness institute. Like I said I don't know why, there is research on the HBOT therapy, I'm hoping this therapy will give the LDN time to kick in. And I looked up all the new supplements they put her on, they look promising for helping the gut and inflammation.
 
inanitsch,

Can you give the details of the HBOT used at the Whitaker wellness institute, I want to know if this is something that can be done at home, with the RX of course for the FDA approved soft (1.3 atmosphere) chamber and an external oxygen concentrator, I can rent both of these required components.
 
Inanitsch, glad to hear things have turned around for your daughter. My daughter is home from the hospital and feeling much better. Almost normal stool, and is continuing Flagyl and Vancomycin round the clock. She is on 40 mg of prednisone. crp level was 10 last Friday. New GI doctor will do a Fecal transplant in a few months and from reading up on the procedure it cures C-Dif and hopefully IBD. i want to wait until she is stable before starting LDN again. When you have been as sick as she has there is no room for "getting worse before getting better"
From my readings, LDN strengthens the immune system and works in the opposite direction as Biologics, which lower the immune system. I think IBD is still in it's infancy as far as the medical community understanding the cause and effective cures for this disease. Hopefully this will change soon!
 
Serchingforhealth, glad you are home. I sure wish your new GI would do the fecal transplant soon, since it does help c-dif. Maybe you can let me know the name of this doc, if things turn south, it would be nice to know of another possible treatment. cheers to you and your daughter, hope the home cooking will put some weight back on her.

Deteoj, I will have to get back to you on the details regarding HBOT. I'm not a detail person, but it seems like the atmosphere was 2.0 or something. We will probably head back down there for Friday and Saturday treatment, it's a 3 hour drive each way. I'll get the info then. And she sits in it for a total of 70 minutes, I've heard others say you need 90-120 minutes, but seems to be working for us, but she doesn't have any fistulas, which I think can take up to 40 treatments. I just started fantasizing about starting a not for profit HBOT treatment center........wouldn't that be nice!
 
How long did it take for LDN to kick in for anyone who's on it watching this thread???

This is my 5th day and while I know it's really early to making judgements I see no improvement. I have had the weight loss and dreams associated with LDN though, so I guess it must be doing something.
 
lsgs -- it took a looooooong time. I think it helped me, for sure, but the change was gradual. There was no immediate result for me, nor was there a point where it "kicked in" and I suddenly felt better all at once. Instead, I just felt incrementally better until one day I realized that I was pretty much having a normal day on most days. I've seen others on here say that 3 months is a good time to reassess how you're doing, and that sometimes people can get a bit worse before they get better on LDN. Hang in there and let us know how you're doing!
 
I echo JDTM. That is exactly what to expect... no breakthroughs, no eurekas. Just a slow, almost imperceptable improvement... that is what makes the waiting so hard. And it is common to feel worse before things slowly turn around. Then one day it dawns on you.. "Hey, I had a normal day today"... then another, and another.. and your old life is back...
 
Thanks so much for the replies. I knew things could get worse before they get better but I didn't expect them to be this bad. I used to use dihydrocodeine for pain relief and control of diarrhoea and now I can't take it it's been pretty horrible. I cannot keep out the bathroom! Really struggling to stick it out but I know I have to! My alternative is azathioprine so I need to remain positive!
 
I don't know how bad it gets typically... When I went thru it I was also going thru pred withdrawal. And, beside feeling sicker, my emotions were on the pred roller coaster too.

The odds are in your favour... LDN has a very high success rate. If you have the right compound, and don't have an issue with overgrowth of candida, it really should work.
 
I don't know how bad it gets typically... When I went thru it I was also going thru pred withdrawal. And, beside feeling sicker, my emotions were on the pred roller coaster too.

The odds are in your favour... LDN has a very high success rate. If you have the right compound, and don't have an issue with overgrowth of candida, it really should work.
 
I have had to stop taking LDN. For the second time, when I tried to increase my dosage, I became severely depressed. It's a fairly rare side effect, but not unheard of.

I wish everyone else luck and hope that it works for you all.
 
My doctor told me if you feel depressed it means the dose is too high and you try stepping back the dose, normally by 0.5mg. He said it's pretty common??
 
Well guys, I have been on LDN about 2 weeks now and haven't had diarrhoea for 8 days. This has never happened except when on steroids. It feels so weird. I still have pain but I have ongoing cholecystitis and my gp thinks the pain is from that, not bowels. Do you guys have any monitoring while on ldn or just let your symptoms guide things?
 
My son, Victor, has been on 4,5 mg LDN for a year now. He is doing great. He has no symptoms at all. He is in his junior year of high school, getting perfect grades.
We are still fighting his anemia, but it is getting better.
Thank you Kev for all your information about LDN. It has been a blessing for my family.
I wish that LDN could help everyone whose is suffering from this horrible disease.
 
Just an update on Grace.
We meant with the team at Mayo Clinic and the GI had Grace do a ct scan. It showed no thickening or damage as of yet. The GI stated her approval and said that some get damage very quickly but Grace hasn't yet. I smiled and said well she's on LDN.
The bad news is Grace is stil having issues and we may now go onto Aza or maybe just Budesonide. Hopefully in a year or two we can wean of those but for now we will be keeping LDN.
 
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Hi farm wife , I'm glad grace is doing well I have been following her progress as my son was diagnosed with crohns in may and we have been through hell! He has just finished his 8 week een and is finally ( touch wood ) doing great :) our gastro is looking into LDN on my insistence abd is willing to help us out with this my biggest concern is taking Trent off aza to start this does anyone know if we can stay on this whilst starting LDN? I would be grateful for any info anyone can give me . We go back to see the gastro on the 6 th if December so I want as much info to bombard him with as possible . Also thank you victor for posting I read you last post out to my son and he was so happy and wants to know when he can start LDN he is starting high school next year so we need to get this under control as much as possible. And thank you to Kev I love reading your posts thank you for sharing with us all :) thanks guys Wendy
 
I don't know if you can take LDN with AZA. I did take AZA, but had such severe reaction (it put me in the ER) I had to come off it immediately. It was that bad reaction that prompted my GI to give LDN a try. Thank God! So I never took both simultaneously.

As for the thank you's from everyone, it is greatly appreciated, and totally unnecessary.
 
LDN and Flaring

I don't post much but read many of the posts. I'm still confused as to what to expect when on LDN. Does everyone flare on LDN? When does the flare start and how long does it last? How can I tell if it will pass as the LDN kicks in or will I need prednisone to stop it? I started LDN a year ago. About three months in, I flared and the GI put me on prednisone so I had to stop the LDN. I have not tried the LDN again. I feel pretty good now and I guess I'm afraid to start LDN if it is going to put me in a flare. I read up on Dr. Smith's study and couldn't find any reference to flaring. Thanks for any information you can give me.
 
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Wendles and Cannynancy,
I have asked Jack's GI about both of these and he researched and this is what he told me.
Yes you can take LDN and Aza together ideally coming off aza about 3 months into LDN giving LDN time to do its magic this was his recommendation to us.

As far as LDN and prednisone he said they could be taken together (we just did) the 10mg "recommended" was done for the studies as he says it is not a theraputic dose of pred at that level so it would not interfere that way they would know if the LDN was working as opposed to the Pred doing the job - make sense?
 
I'm using LDN for nearly ten weeks and still flaring... I don't know if I should wait 2 more weeks(referring the Smith's clinical trial - 12 weeks) or stop taking it and start corticosteroid and methotrexate. I don't have too much choices left though; I used remicade, humira, imuran and all failed. Having a hard time deciding.I will do blood tests tomorrow and maybe talk to my GI doctor.
Do you have any advice?
Thanks.
 
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Have you checked for candida overgrowth? It will block LDN (how I don't know, but it is one of the known issues). And, your supply (supplier) of LDN, it is 'known' good? I mean, if a pharmacy was making it for the 1st time... could they have substituted Naltrexone SR? Or, could it be your supply was leftovers, more than 3 months old??? If you check the above, and everything is kosher... then it may be that you are one of the few for whom it won't work.... but, if it were me, I'd double, triple check everything first before reaching that decision.
 
Kev- thank you for reminding me candida. I also ordered lab test for candida overgrowth and bacterias today. I'm waiting for the results.
 
Hello,

My name is Sally and I live in the UK. I would like to join this Support Group. Not quite sure how I do this!

I am looking forward to talking with you all as I am about to try LDN for Crohns.

Sally:)
 
Welcome Sally,
You just joined by posting here. Please keep us updated on your journey with LDN you might consider starting a thread about your journey, kind of like a diary. It also helps keeps track of things. Handy for if you need to look back and find something.
 
Well, today I am pretty depressed. Just had my one year follow up colonoscopy this morning. Last year I had my hopes up: while the Dr was able to locate active inflammation in my terminal ileum, my colon as a whole was clear. She wanted to start Remicade but I was (and still am) really reticent about it. I've had allergic reactions to 5-ASA drugs (Apriso) and even sulfa meds. And I already fight depression, so Entocort also scared me as an option as depression and anxiety can be a side affect. So in the end she let me try LDN, which I've been on since March this year. I really hoped I see good news in the scope today.

Just the opposite: inflammation still just as active in the ileum, still with ulceration, now with an area of stricturing that the scope could not pass this year. And on top of, inflammation is active again in my colon: a stricture in the distal transverse colon and erythema in the sigmoid colon. So I'm still at "moderate to sever ileitus" and now with mild sigmoid colitis and a "bland stricture" in the transverse colon.

I am so knocked over by this, so frustrated. I've been on a Paleo diet for a year and a half, I'm eating better than I ever have, have more energy than I've had in quite a few years, all my blood work is perfect and I don't even really have any symptoms other than occasional bloating and D, which is usually after falling off the "good food wagon". I really thought I'd be progressing this year, and instead its the disease that's progressing.

Anybody else have this result? Does anyone find success combining another med with LDN? (Not that I think I'd do well with anything else...I have such low tolerance even cold meds knock me out.)

So depressed. :depressed::sign0085:
 
Keep your hopes up, buddy. I don't know what advice to give you, but I do have a couple of follow-up questions for you:

1. Was the colonoscopy planned, or was there something that precipitated it? If it was a planned follow-up, I understand, but I wasn't sure if they'd give you one if your bloodwork was coming back alright.

2. Other than this news (which I'm sure is very frustrating, so I'm sure you're upset), how have you been feeling lately? You mentioned having energy, and with the combo of Paleo and LDN, I'm sure it's doing something, even if it's not working the way it should.

Personally, I take Pentasa and omeprazole in addition to LDN (I know that you have bad reactions to 5-ASA drugs, so that doesn't exactly help you, but still). I've heard of others remaining on LDN while taking other drugs as well (more "conventional" meds like immunosuppresants or biologics).

Anyways, just know that hope isn't lost. As an aside, I have personal experience with Entocort and depression -- when I was first diagnosed, it was probably the straw that broke the camel's back (I was pretty anxious to begin with) and I went into full-blown depression mode. I got off the Entocort as quickly as I could, as I thought that was the root cause, but I remained really bummed out and shaky. Finally, I managed to get myself a bit more under control with medication (something I had avoided for the past decade or so), and when I went back on Entocort to try it again, I experienced no depression or negative side effects of the sort. Your mileage may vary, of course, but it's something to keep in mind.
 
JDTM:
This was just a regularly scheduled "surveillance" scope. As I did not accept the doctor's "conventional" medical treatment (i.e. Entocort or Remicade) she wanted to monitor my progress. So this was my one year followup. I have no real symptoms, I am lucky that way - you would not know anything is wrong with me unless you saw the scope pictures. The more I think about it, the more concerned I am about developing an obstruction from the stricture or scarring (as the report said "unreversible obstruction").
I am thinking of Entocort...and seeking a mild anti-depressant perhaps as well. I just feel like without meds I feel fine, but the disease progresses unseen, but with meds I've had horrible reactions and I fear diminished quality of life from side effects. Such a "choice".
I feel like my system has betrayed me after I have made so many changes in the last year.
-Liz
 
I wish I could offer words of encouragement, but if you've been on 4.5mg of Naltrexone since March, if it was going to work... the tide should have turned months ago. Like June.
(that is allowing that it was Naltrexone, not Naltrexone SR, and that you don't have a case of Candida overgrowth).

Scar tissue is permanent. You need to stop the progression of the disease immediately. I believe (because I have reason to) in LDN very strongly, but, regrettably, even it doesn't work for everyone who tries it. If you followed the regimen to the letter, and it hasn't worked by now, then continuing it and expecting a different outcome.. well, not very likely.
 
Kev:
I'm afraid you're right...that's the first thing I thought when I saw the report this morning. I know the LDN has been good - it's from McGuff's, a reputable pharmacy. It just isn't working for me.
Liz
 
Hi,

Does anyone know if you can take diazepam with LDN. Having such fitful, tensionful sleep at the moment and end up sleeping a lot in the day. It's only supposed to last for a short while but my daughter is getting married at the end of the month and I though that if I take diazepam (2mg) at night with the LDN, it may help with sleep a bit and relax me.

Any advice out there? How long did the sleepless nights last for you?

I am also having trouble eating much at all - just no appetite. Losing weight which I can well do without losing.

Help!!

Sally
 

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