Transdermal LDN put me in remission!! PART II

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InSoFla
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Date Joined Jan 2011
Total Posts : 4679
   Posted 5/14/2011 8:28 AM (GMT -6)   
I'm sorry you aren't getting the greater progress you were looking for, but you have to remember  that everyone is different. LDN takes time to boost the immune system.
And in some, as you know, it brings to light an already pre-existing but perhaps unknown candida problem.
Badslinke's idea of going on a 1 week stint of modifiied SCD diet is a good one. Cheese is a not legal on the SCD.
How about using protein shakes as a source of protein for the interim, since you don't like meat or fish?

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

InSoFla
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Date Joined Jan 2011
Total Posts : 4679
   Posted 5/14/2011 8:29 AM (GMT -6)   
 
Thanks so much for your support. It means alot.

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

InSoFla
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Date Joined Jan 2011
Total Posts : 4679
   Posted 5/14/2011 8:31 AM (GMT -6)   
 
How are you doing? Any better results? What are you eating?

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 593
   Posted 5/14/2011 8:41 AM (GMT -6)   
How about bacon and eggs with no toast?  Too greasy? Is that legal?  I really don't know what I should eat.  Maybe I will go buy the SCD book.
Sally (40yrs old)
UC since 2002
Humira and Remicade (discontinued), Asacol, Immodium, Rowasa, Canasa,Proctofoam,Transdermal LDN, Calcium, Vit D, Folgard, VSL#3, Turmeric, currently trying Apriso.

Sibby
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Date Joined Apr 2010
Total Posts : 1249
   Posted 5/14/2011 8:42 AM (GMT -6)   
InSoFla said...
notsosicklygirl,
Regarding: I really want to try LDN but my GI said it's not likely to help. She said there is barely any data for UC and what there is doesn't show good results. She said it was something you may try as a last treatment if nothing else were available. I disagree, I think anything that is not harmful that could possibly be used for a treatment should be explored before taking medications with unknown side effects. Maybe there is no data because there is no incentive for the pharmaceutical companies to study LDN. I contacted a local doctor about LDN and he never called me back. I tried to call him a few times and no luck getting in touch. I think I am going to have to start back on 6mp again for now, I have to do something or I will probably flare up. I still hope to try LDN in the future.



It really doesn't surprise me that your GI doc didn't want to help. I agree with your assessment about the complicity of big pharma. And I also feel strongly that LDN should be the first drug of choice since it has no side effects, instead of being the Last Drug of choice.

Badslinke, gave you some good resources to get an LDN precribing doctor. I hope you don't give up on it, because it really works.




LDN isn't side effect free. LDN can cause insomnia, nervousness, headache, dizziness, fatigue, nausea, vomiting and anxiety. When Dr. Smith tested crohn's patients with LDN there were minimal side effects reported.
Has it been tested on all IBD patients? Perhaps there needs to be more testing done before LDN becomes the first drug of choice.

Warren86
Regular Member


Date Joined Mar 2011
Total Posts : 37
   Posted 5/14/2011 9:23 AM (GMT -6)   
Hi everyone,

I've been reading this thread with great interest. I'm really pleased to see LDN is proving to be successful for some of you :)

I have Crohn's colitis (Crohn's disease limited to the large bowel and rectum) which was mild and very manageable for 5 years (spent a lot of that time in perfect, symptom free remission) but in the last year has become severe and drug-resistant - so I'm facing a panproctocolectomy and a permanent ileostomy. I'll be 25 in a month...

I'm considering giving LDN a shot before I let this happen, but I'm wondering if the disease is really too far gone for this to help... oddly I don't have a lot of typical symptoms. I'm having one b/m per day, it's soft and unformed but solid (definitely not D) - it's also in many skinny pieces (I suspect due to narrowing of the colon). On close inspection there is some mucus but no blood, and other than occasional mild stomach discomfort I get no pain, and no nausea etc. However, the disease is VERY active and the inflammation severe. I'm sure it's done irreparable damage, but because my colon is still functioning in spite of this, I feel like if I could just get the inflammation to stop, I could save it (even if it's a scarred mess afterwards).

I'm currently on Humira and 6MP and I know I would need to come off these to give LDN a try - problem is if I did LDN I would be doing so on my own i.e. without my doctor's help and consent because it's not something they will prescribe. I would obtain the tablets and make up the correct dosage myself (sounds dodgy but lots of people have done it with success). I'm obviously wary about coming off my meds unassisted, especially as they may be what's stopping me from experiencing more severe symptoms. It's all very tricky. And I guess no one can answer this for me, but what I really want to know is, what kind of shot do I have for LDN to do anything for me? Does it tend to only work in milder cases? I think I'm probably just clutching at straws here...

Anyway, any advice or insights would be greatly appreciated :)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10379
   Posted 5/14/2011 9:40 AM (GMT -6)   
The doctor I spoke to was from a list I received from Crystal. I could try other doctors but this one was accepting my insurance. Maybe I will try them back again on monday...
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + Canasa + Rowasa

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 5/14/2011 2:05 PM (GMT -6)   
Here is some information, that was posted on another forum I belong to- an LDN and IBD group, on how LDN works, which I thought might be helpful:
 

Please find below written by Dr Tom Gilhooly:-

 

The 2nd European LDN conference in Glasgow this year saw the first presentation of a remarkable study into LDN for the treatment of fibromyalgia by Dr Jarred Younger of Stanford University. This is the sort of top quality research that we have been crying out for, and perhaps even more remarkable than the results of the study was Dr Younger’s clarity on how LDN works. The vacuum that has existed in LDN research has been filled by lots of myths and legends such as timing of administration and dosage of the drug. Dr Younger explained that LDN is a “racemic mix” of mirror image right and left handed molecules. This is common in chemistry, and most drugs consist of such a natural mix. It is usual for only one of the sides to be biologically active, but in the case of LDN both sides are active. The right handed molecule blocks the opiate receptors, which confer the action which the drug is licensed for i.e. blocking the action of heroin and other illicit opiates.

The more interesting part regards the left handed molecule, which acts on the Toll-like 4 receptors on the surface of immune cells and acts as an immune modulator. Dr Younger studied the effect on microglial cells, a type of immune cells important to the neurological system which become active when the immune system is activated. These cells are important in fibromyalgia, but also in MS , Parkinson’s Disease and several other neurological conditions. The left handed (levo) naltrexone binds to these receptors and reduces the inflammatory chemicals that are pouring out of these cells. This idea makes great sense and fits very well with our findings in the clinic. If this is the mode of action, it fits with the hypothesis of Dr Agrawal and others, and the timing of dose is irrelevant. This is a big discovery, but even Dr Ian Zagon from Penn State who is a big advocate of the opiate hypothesis, states that timing is not an important factor. This would suggest that the opiate-blocking effect of LDN is actually the limiting factor on dose and we should aim to get the highest dose possible that the patient can tolerate, to produce the greatest effect on the immune system. It also puts paid to the idea that LDN is an “immune booster” which should not be used with other immune modulators. In fact it is likely that LDN will be synergistic with these drugs.

As if this was not enough for one month, along comes the much anticipated double-blind study on Crohn’s Disease by Prof Jill Smith and Ian Zagon from Penn State. This shows a remarkable 83% improvement in the LDN group, with almost half going into remission. Not surprisingly given the participation of Dr Zagon, they ascribe the improvements to increased opiate expression, but the alternative action could be just as viable. In Crohn’s disease and other inflammatory bowel diseases including Coeliac’s disease, there is an increase in Toll Like 4 Receptor numbers on the bowel mucosa. This could explain the rapid and dramatic response to LDN of many patients with these conditions.


Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

InSoFla
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Date Joined Jan 2011
Total Posts : 4679
   Posted 5/14/2011 2:12 PM (GMT -6)   

Regarding: LDN isn't side effect free. LDN can cause insomnia, nervousness, headache, dizziness, fatigue, nausea, vomiting and anxiety. When Dr. Smith tested crohn's patients with LDN there were minimal side effects reported. Has it been tested on all IBD patients? Perhaps there needs to be more testing done before LDN becomes the first drug of choice.
 
Sorry Sibby, you haven't done all your homework. LDN can initially cause some insomnia due to vivid dreaming. The other symptoms you mention is for regular naltraxone, not LOW dose naltrexone. Also, you have to take into consideration that some people are allergic the filler used in the LDN pills, which is one of the reasons I have been saying to try: Transdermal LDN, which bypasses the gut and gets readily absorbed into the blood stream.
 
As far as Dr. Jill Smith and Crohns Patients, there has been another Study done, you can google it if you like.
 
And even with those very mild side effects, as compared to possible rare forms of blood cancer (TNF drugs, Remicade, etc....) side effects, I will still say, Tarnsdermal LDN should be a drug of first choice, NOT last choice.
So many people have been helped by it.
 
 
Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

InSoFla
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Date Joined Jan 2011
Total Posts : 4679
   Posted 5/14/2011 2:22 PM (GMT -6)   
 
Welcome to this forum. Sorry about your suffering.
I understand about your having to try LDN on your own, and others have done it too on their own, with success.
I think if you have the support group and forums in place to help you through the process with questions, etc... it makes it much easier.
 
There's another forum that is especially for LDN and IBD, you can certainly ask them for advice as well. They, too are a wonderful group of devoted people who have helped many with many queries.
 
Now granted, I am no doctor, but based on all the research I have done, stories of people getting better on LDN, I would say: go for it. Give it a try; I truly believe it will help, even with the advanced stage you say you have.
As you probably already know, LDN does boost the immune system, and that's what you need to help you deal with the disease process.
 
I think you have a great shot.
Good luck and let us know of your progress :)

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

badslinke
Regular Member


Date Joined Apr 2010
Total Posts : 341
   Posted 5/14/2011 2:44 PM (GMT -6)   
Box,

Ya, certain cheeses are on the diet, but it's always been a contentious point for those who try the diet, because dairy is a classic gut irritant for a lot of people. The issue is the SCD already restricts a lot of what you can eat, and then having to cut out dairy because you may be allergic to that as well just pushes the restrictions to the realm of ridiculous. It also means you'd have to stop taking the homemade yogurt, which is a cornerstone of the SCD plan. I gave up on the SCD, and am glad I did. I at least weigh more now, though I'm not yet fixed.

Interestingly, my worst time are also in the morning Box. I tend to get pure liquid movements, but for some reason things form up later in the day. Not greatly formed, but noticeably so, so at least I feel like I can hold the movement for a bit before I have to rush to the bathroom. I'd have to attribute that to the LDN, because I didn't even have that much just a week or two ago. I'm on day 9 now as it is.

Notsosickly,

Try John Sullivan in PA. You might have to go out of pocket, but it's still worth it. My doc here charged me $65 for the visit, then overnighting LDN cream from skip's cost about $100. I don't have insurance, and paid for it all from savings. It still doesn't amount to much relative to normal medication and visit costs. Don' give up til you get some and try it for 60 days. Every last piece of input from all these different people is critical to understanding if this stuff can really work on a widespread basis.

Warren,

I WISH I had your symptoms haha. There are days when I pull 20+ bathroom trips. I don't even want to think about permanent damage. I agree with InSoFla, just try the LDN. Given it's virtually side effect free, you literally have nothing to lose. And then of course add your story here so the pot of testimonies grows bigger.

On note to all,

A few days ago there was some discussion on alcohol and LDN on this forum. Well, I did some experimenting last night, and applied my LDN before heading out to a bar an hour and a half later. After having 3 sips of whiskey on the rocks, I immediately felt some bad chemical reactions. I could tell if I kept drinking that whiskey, I was going to be in an awful state of affairs. It hurt my stomach and made me dizzy almost immediately. I stopped and had a friend drink it for me. I love whiskey, and it's never done that before. What I think I will try next is having a drink (just one) an hour or two before I apply the LDN, and see what happens.

Here's being a guinea pig :-) Cheers.

and Go Team!
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.

badslinke
Regular Member


Date Joined Apr 2010
Total Posts : 341
   Posted 5/14/2011 3:16 PM (GMT -6)   
Warren,

I was thinking right now, and I remembered a time when I decided to stop my 6mp cold turkey. That was when I went on the SCD and was determined to fix my UC naturally. I have to admit, I didn't do too well after stopping like that. I had a rush in symptoms that was pretty severe, but that may also have been due to a number of other factors.

The major issue here is that 6mp has far worse side effects than LDN. What you have on your hands then is a serious judgment call. If you do go off 6mp to try LDN, I recommend you do it slowly, like a prednisone taper. Chances are you will see some worsening of symptoms, but as the LDN kicks in, those symptoms should go away. This is of course something you ought to do under the guidance of a physician, but that may not be possible, as closed minded as most GIs are.

I still agree with InSoFla that you should do it, because a story like yours, if successful, could prove invaluable to an incredible number of people on here. A big roadblock for a lot of people is stopping current meds just to give LDN a try. If it works for you, it will likely work for a lot of others. This goes without mentioning that you may be on the verge of discovering a long term, nearly side effect free solution for your IBD problems. That alone is worth it, I think.

I also want to mention, just because there's really nowhere else I can do this and get away with it, that I just had a nicely formed BM. One of the nicest in days. hahahah Here's to being a fellow IBD sufferer!
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.

badslinke
Regular Member


Date Joined Apr 2010
Total Posts : 341
   Posted 5/14/2011 4:18 PM (GMT -6)   
Boxermom2 said...
How about bacon and eggs with no toast? Too greasy? Is that legal? I really don't know what I should eat. Maybe I will go buy the SCD book.

Ya that's legal, as long as the bacon has no sugar added to it, which is virtually impossible to find. Hence the difficulty of the SCD. This thread isn't about the SCD, so I don't want to hijack it, but to give you the quick idea Box, the SCD lets you eat: all unprocessed meats, non-starchy vegetables, any fruits, nuts, certain legumes and certain cheeses, honey, homemade yogurt, and that's it. Forget about anything made with any ounce of processed sugar (i.e. corn syrup), potatoes, corn, wheat or any of its derivatives, grains of any kind including rice, and even unripened bananas because they have the wrong kind of starch. It is incredibly restrictive and very, very difficult to do in the States because 90% of everything you find in the stores has at least one of the above illegal ingredients, and the SCD requires absolute 100% adherence in order to "work". You really have to be religious about it, and you end up spending a lot of time in the grocery store carefully reading labels. I lost a lot of weight because of the lack of complex carbohydrates, but that's another story.

Going wheat and dairy free for a week is a breeze in comparison. Today is Day 1 of wheat free and dairy free for me, and Day 9 of LDN. I'm actually feeling ok today, but I want to see if going WF/DF speeds up my progress. We shall see.
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 5/15/2011 9:40 AM (GMT -6)   
Found some interesting on using the transdermal cream from LDN Science link.

For LDN to work, the full LDN dose must be delivered to the body in one go. Transdermal delivery methods by nature result in slow continuous delivery of a drug. This will result in continuous opiate receptor blockade - quite the opposite of the purpose of LDN which is to deliver a very short term blockade in order to create the beneficial rebound effect.

http://www.ldnscience.org/low-dose-naltrexone-ldn/questions-and-answers
Diagnosed July 2010
flaring as Jan 2010
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Budesonide 1mg Suppositories x2 daily
Transdermal LDN 4.5 mg
Energy Multi-Plex / Vital-Zymes Complete / Microgestin (birth control), Magnesium for leg cramps

cupcakespinkgal
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Date Joined Jun 2010
Total Posts : 720
   Posted 5/15/2011 10:06 AM (GMT -6)   
I have read this before too. I think it is Dr Z and Dr McCandless who have very different views on this. I have read a rebuttal, can't remember where, from Dr McCandless. She said she didn't believe this to be true, however if you were concerned to wash your arm 20 minutes after applying the cream.

I thought that was the point of using Emu Oil and not anything else, the Emu Oil helped absorb at a faster rate.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.
Previously on Remicade, Humira - No surgeries so far

Meds ~ Sulfasalazine 2/2xday, 3mg LDN
Supps ~ Culturellle, psylium seed, Florastor, magnesium, D3, K2, Calcium/Boron, multi-mineral.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 5/15/2011 10:15 AM (GMT -6)   
Here is her response to an inquiry about TD versus capsul

"Dr. Zagon says that LDN cream keeps working in the system so that it ends up being
a high dose rather than a low dose because the receptor is continuously blocked. This
is not how LDN is supposed to be used for autoimmunity, though it is used in this format
as an eye ointment (e.g. corneal scarring) and topically for wound healing in diabetics.
However, it is not recommended that one use trans dermal creams for the purpose of
inhibiting auto antibody production. A low dose pill is much better."

My answer to Brenda, and cc'd to Dr. Ian Zagon, Dr. Jill Smith and Dr. Skip Lenz:


Brenda: Though I admire Dr. Zagon immensely, I am quite certain he is incorrect about TD-LDN made per Coastal Compounding's formula with emu oil; the transdermal goes into the blood stream immediately, sooner than the time it takes for a tablet or capsule to dissolve and get into the blood stream. I have not done tests checking its receptor blockage; if he has I would appreciate receiving this information. However, I tell parents they can wash the cream off after 15 or 20 minutes; it is already doing its job and does not continue to send LDN after a very short time. His statement would only be true if the carrier were a sustained release vehicle; emu oil takes it directly into the blood stream (that's why it was chosen), and we have often seen children react to the transdermal cream washed off or not within 30 minutes, showing increased happiness and socialization. 80% of the children in my private clinical study increased their CD4+ count in the 16 weeks of the study using Coastal's transdermal cream, and many thousands of parents are happily giving this to their children with autism. My e-list for autism and LDN (2002 members now) has hundreds of reports after reports of the children clearly responding within days and continuing to respond positively to the cream use of LDN.

I also have a group of Crohn's children responding marvelously to TD-LDN, some of them going from 5 or more bloody stools a day to normal stools within 4-6 weeks of starting it.

I have just proposed a research project to be done at Northwestern University with human brain slices showing that LDN increases the cysteine transporter mechanism across the blood-brain-barrier to increase neuronal glutathione, and it looks like we may be given research funding for this project by the Autism Research Institute (pending availability).

I will cc Dr. Zagon and Dr. Jill Smith to this post. Jaquelyn McCandless MD
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.
Previously on Remicade, Humira - No surgeries so far

Meds ~ Sulfasalazine 2/2xday, 3mg LDN
Supps ~ Culturellle, psylium seed, Florastor, magnesium, D3, K2, Calcium/Boron, multi-mineral.

badslinke
Regular Member


Date Joined Apr 2010
Total Posts : 341
   Posted 5/15/2011 12:24 PM (GMT -6)   
Peace&Harmony said...
Found some interesting on using the transdermal cream from LDN Science link.

For LDN to work, the full LDN dose must be delivered to the body in one go. Transdermal delivery methods by nature result in slow continuous delivery of a drug. This will result in continuous opiate receptor blockade - quite the opposite of the purpose of LDN which is to deliver a very short term blockade in order to create the beneficial rebound effect.

http://www.ldnscience.org/low-dose-naltrexone-ldn/questions-and-answers

I also read this before. It's complete nonsense. I can physically feel the effects of LDN within 30 minutes of applying it (the right side of my brain kicks up this electrical charge, pretty interesting). Besides, if it were true, the cream wouldn't be working for those on this forum, which it certainly is.

I have to report: last night was my 10th dose of TD LDN, and I'm doing better than ever. Even the movements this morning weren't all that bad. They're not beautifully perfectly formed yet, but they have some real substance, have less mucus, and no blood. That's FAR better than I was doing before I started. I was able to go out last night without nearly as much fear as usual.

I also had some whiskey last night (just one, on the rocks) a few hours before I came home and applied the LDN. To my expectations, I had no sick feeling, unlike when I applied the LDN and then drank within a couple hours. This should provide some relief to those who say they enjoy drinks occasionally. As always, experiment with caution, but as long as you take the LDN after you drink and your buzz has diminished, you ought to be fine.

More progress to come!
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 5/15/2011 2:04 PM (GMT -6)   
Badslinke,

Thanks for the info. I posed a new question to LDN science regarding this. I don't think there has been actual studies done to determine if TD or pill for is best. Would be interesting for Dr. Jill Smith at Penn State to include this in one of her studies.

After I started using the TD LDN two amazing things happened.

1. no more swollen ankles from the Budesonide suppositories
2. in 2 weeks I got real stools straight from complete liquid D. Since then I always had the stools.

I'm going to Mayo on Monday for a second opinion. Made the arrangements when I was worst off. It will be interesting to hear their opinion of LDN and Budesonide suppositories...both off-label use here in the USA!
Diagnosed July 2010
flaring as Jan 2010
As of 2/2/2011 up to 15cm - mild to moderate - ulerative procitis
Apriso 4 pills AM/ Budesonide 1mg Suppositories x2 daily
Transdermal LDN 4.5 mg
Energy Multi-Plex / Vital-Zymes Complete / Microgestin (birth control), Magnesium for leg cramps

badslinke
Regular Member


Date Joined Apr 2010
Total Posts : 341
   Posted 5/15/2011 7:06 PM (GMT -6)   
Peace&Harmony said...

After I started using the TD LDN two amazing things happened.

1. no more swollen ankles from the Budesonide suppositories
2. in 2 weeks I got real stools straight from complete liquid D. Since then I always had the stools.


Nice! I think that makes LDN 4, UC 0 or something on this forum. I feel like I'm on my way, but I still need more time to really get there. I hit the 2 week mark later this week.
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 5/16/2011 11:13 AM (GMT -6)   
Boxermom,

How are you doing? I have been reading a lot about dosing on some other LDN groups and it keeps coming up that IBD is the one disease that seems to not have a standard dose that works. There were comments that a lot of IBD patients do better on 3 mg or 3.5 mg. One way they said to tell if the dose was too high for you is if you started waking up more tired and felt like you were in a fog, then to back down my .5mg until you felt energy return or the fog lift.

Another thing I have been reading is twice a day dosing has been showing good results for people using LDN for IBD. I don't know much about this but there are some doctors who say the IBD patients benefit more from twice a day dosing 12 hrs a part because it provides more anti-inflammatory effects.

Just some things to think about, some people have to play around with the dose to see what works best for them. I personally think I do best on 3 mg a day.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.
Previously on Remicade, Humira - No surgeries so far

Meds ~ Sulfasalazine 2/2xday, 3mg LDN
Supps ~ Culturellle, psylium seed, Florastor, magnesium, D3, K2, Calcium/Boron, multi-mineral.

texasmax
Regular Member


Date Joined Oct 2010
Total Posts : 146
   Posted 5/16/2011 11:21 AM (GMT -6)   
I'm 2 weeks in, no changes yet, on 4mg but have'nt started tinkering with dosing yet...

Cupcakes- what you saw about twice a day dosing- I'm assuming that meant, the normal dose given twice a day (vs. the normal dose split in half)?
UC October 2010: 20mg Pred, 3600mg Asacol
Dec 2010: 40mg Pred, 4800mg Asacol, 2x VSLDS
Psyllium, fish oil, Forvia, VitD, Calcium, lactose-free
no luck with gluten-free, SCD, low-residue
Jan2011: mesalamine enemas working!

Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 593
   Posted 5/16/2011 12:18 PM (GMT -6)   
I'm basically the same. No other real changes. I don't think this is going to get me into remission. I don't feel really bad but I don't feel great either. Stools still formed for the most part. Still have urgency and frequency issues. I've been on it almost two months now.
Sally (40yrs old)
UC since 2002
Humira and Remicade (discontinued), Asacol, Immodium, Rowasa, Canasa,Proctofoam,Transdermal LDN, Calcium, Vit D, Folgard, VSL#3, Turmeric, currently trying Apriso.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 5/16/2011 1:24 PM (GMT -6)   
texasmax,

I have read people do both. It seems most common that people are finding their max daily dose and split that in 2 and take half in the am and half 12 hrs later before bed. However, there are some people taking 4 - 5 mg twice a day also. Not sure if they felt 9 mg was their max dose or not.

I am contemplating trying it because I have signs that I still have some inflammation and certain things are making the inflammation worse. Since I only take 3mg I think if I do twice a day dosing I am going to do 2 mg am and 2 mg pm. Not quite sure why this provides more anti-inflammatory effects, but I have read it twice now, one in a journal article and one in a letter from a different doctor. I am thinking it may be worth a try and see what happens!
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old.
Previously on Remicade, Humira - No surgeries so far

Meds ~ Sulfasalazine 2/2xday, 3mg LDN
Supps ~ Culturellle, psylium seed, Florastor, magnesium, D3, K2, Calcium/Boron, multi-mineral.

Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 593
   Posted 5/16/2011 1:48 PM (GMT -6)   
Maybe I will try splitting the dose using half in the a.m. and then again at bedtime. I am willing to try anything if it works.
Sally (40yrs old)
UC since 2002
Humira and Remicade (discontinued), Asacol, Immodium, Rowasa, Canasa,Proctofoam,Transdermal LDN, Calcium, Vit D, Folgard, VSL#3, Turmeric, currently trying Apriso.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10379
   Posted 5/16/2011 1:57 PM (GMT -6)   
I would imagine that LDN, like all other UC treatments, works for some but not for all...
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + Canasa + Rowasa
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