Low Dose Naltrexone LDN

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Carriagehouse
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Post by Carriagehouse »

Haha!! I totally agree :)
Leslie
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Post by KD »

I have to say that I have had very significant changes in my gut since I started my allergy elimination diet. My theory is the LDN has been having some impact all along but I irritated my gut so much with the insisted (by my Dr.'s)drugs, high dose NSAIDs and Colchecine that I took last year. My gut needed more time to heel for the LDN to kick in along with elimination (which I had done before, at onset of my MC, 4 years ago without success). I was first diagnosed with LC then 6 mos later had another scope and they found CC too. Started on Asacol, no changes, then tried pepto, no success. Begrudgingly started Endocourt had some success but as soon as I weaned symptoms returned. Things got better off and on then with the pericarditis I was starting all over. Now with the combo of LDN and elimination I am down to 2 soft stools a day and no pain, loud noises and finally no pain. Lets hope things continue to improve. 3 more weeks then I start adding foods back in. Wish me luck!! :pigtail:

By the way if you research LDN is being studied at many large Universities now and the Mayo Clinic for other diseases that are said to be autoimmune mediated, Stanford did a very succesful study on Fibromyalgia, Mayo Clinic is studying MS, Penn State is studying a number of different diseases. Interesting stuff!!
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Zizzle
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Post by Zizzle »

Wow, the results of the pediatric Crohn's study at Penn State are truly remarkable! If it can do this much from Crohn's, imagine what it can do for MC? I've long been curious about LDN. My plan is to wait until I'm completely off prednisone...hopefully Plaquenil will be controlling my skin and GI symptoms by then...but if I flare again, I'm going to ask my docs for LDN.
RESULTS: Oral naltrexone was well tolerated without any serious adverse events in children with moderate to severe Crohn's disease. PCDAI scores significantly decreased from pretreatment values (34.2±3.3) with an 8-week course of naltrexone therapy (21.7±3.9) (P=0.005). Twenty-five percent of those treated with naltrexone were considered in remission (score ≤10) and 67% had improved with mild disease activity (decrease in PCDAI score by at least 10 points) at the end of the study. Systemic and social quality of life improved with naltrexone treatment (P=0.035).
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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wmonique2
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Post by wmonique2 »

When is LDN indicated for MC? IOW, when should it be an option as opposed to the standard treatments of budesonide or mesalamine? And also, what are the advantages of LDN?

Thanks,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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tex
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Post by tex »

Monique,

Since it's not an officially-approved treatment, it's not recognized by most GI specialists as a treatment option. So officially, it's never a treatment option (similar to the official medical position on using diet changes to treat MC).

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by wmonique2 »

Tex,

thanks for that. I've been reading the various links you provided and read on the LDN website and I am absolutely fascinated by the whole topic. Am I wrong to think that this maybe less damaging than the drugs we take? (mesalamine in my case). And perhaps I might be more successful with it since I keep having these flares that last 2-3 weeks each time even thoug I am as strict and religious as a nun about my diet.

Through some sort of weird synchronicity, I was looking at that Indian pharmacy website and planning to buy it for somebody I know not knowing that it can be used for people like us. It blows my mind. Never heard of it before then all of the sudden I hear about it from 2 different sources. BTW, looks like I can just buy it and try it on my own...I am just afraid how it squares with diabetes and afraid that I might get worse and not better. Couldn't find anything on all those links that addressed that. I may have to look somewhere else for that.

Thanks a million.

Love,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Post by tex »

Monique,

Regarding Diabetes and LDN, here are links to some information that may be of interest to you:

http://www.diabetesdaily.com/forum/diab ... naltrexone

http://www.tudiabetes.org/forum/topics/ ... naltrexone

This link describes a study currently underway concerning LDN treatment for diabetes:

http://cureresearch4type1diabetes.blogs ... chive.html

Here's the official page on the study:

http://www.clinicaltrials.gov/ct2/show/NCT01053078

Here is what Dr. Mercola has to say about LDN:

http://articles.mercola.com/sites/artic ... eases.aspx

Love,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Carriagehouse »

Thanks for all the links to articles relating to LDN, Tex. They are very informative.

Monique, I had forgotten that the first two nights I took LDN I did have extremely vivid dreams, but I always dream a lot and I usually remember them upon waking, so it didn't seem unusual to me. I am sleeping extremely well, now. Of course we are all different and we each have other medical issues or sensitivities to take into consideration before trying any drugs or supplements, but my experience with LDN thus far has been completely positive. Even my ND is astounded at how my symptoms have resolved since taking LDN. And it is very inexpensive. The compound pharmacy I use sells it for $59 for a 3 month supply.
Leslie
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True friendship is like sound health ... the value is seldom appreciated until it is lost ~ Charles Caleb Colton
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Gloria
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Post by Gloria »

This thread has been very interesting. I wonder if any of my doctors are familiar with LDN.

Gloria
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Post by wmonique2 »

Tex,

Thanks for all the links. I really appreciate your efforts. Looks like it doesn't interfere with the function of insulin and that was my concern. There are some trials regarding hypoglycemia which is not something I am concerned about right now. I didn't think it would since it is almost like an SSRI in the sense that it raises serotonin and I didn't think that serotonin levels affect insulin. It might work like Elavil which also gave me vivid dreams at the beginning.


Leslie---did you start with a small dose like 1.5 and incrementally raised it? I have to find a doc here in ATL who would prescribe it. But I can get it and try on my own and see what it does to colitis. No prescription needed. I spend an equal amount of time being sick than I am good. And I am so tired of it.

Love,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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wmonique2
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Post by wmonique2 »

Tex,

Rectification in order here---LDN doesn't exactly work like SSRI's. It blocks serotonin for 3 hours at night and then for some unknown reason the body tries to restore it with more serotonin. I think some sort of rebound effect...


Love,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Post by tlras »

Very interesting thread!

@ Leslie....so good to hear that you are doing so well...have been wondering about you. Had never heard of LDN till now.

@KD....best of luck to you adding foods back in. Glad you are feeling better! Hope it continues to improve.

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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tex
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Post by tex »

Monique wrote:Rectification in order here---LDN doesn't exactly work like SSRI's. It blocks serotonin for 3 hours at night and then for some unknown reason the body tries to restore it with more serotonin. I think some sort of rebound effect...


Some people refer to it as "resetting" the immune system, (kind of like rebooting a computer).

Love,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by wmonique2 »

Tex,
Some people refer to it as "resetting" the immune system, (kind of like rebooting a computer).

Sometimes I feel like I want to reboot my whole life starting with new hardware, for sure :lol:

Love,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
KD
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Post by KD »

Ha, Ha Monique,
You have no Idea how many times I have wished for that!! It has been a rough 4 years for me but I am beginning to see a light at the end of the tunnel. My parents called last night and invited me to Easter brunch, I kindly refused and for the first time they were understanding. BTW I am having my MIL's Party this weekend. Thanks to many of you on this site I have some great Ideas for appetizers. I found a great recipe for spring rolls that I am going to make not too many mostly for me but I am sure others are going to try some. I am also going to to the prochutto wrapped asparagus some with mozzorella cheese to I saw a link that showed them tied with chives and that looked cute. I do not have a problem with white potatos so I am going to bake some small red potatos and stuff them with Chorizzo (my MIL and her family are Basque) and top them with sheep cheese which is still working for me in small amounts. The rest I am having catered by Whole foods they make some nice stuff for those who still consume gluten etc. I don't have a problem with most fruit and raw vegies so that is the Plan.
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