Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Has any of our members here taken the LDN route ..(Low-dose Naltrexone)
to be treated for autoimmune disease? I read a while ago that one of our members "Linda " was taking this treatment....Ive tried to locate her posts!!
I have been doing some research the last few months regarding this treatment.
I contacted Linda Elsewood at LDN who is the founder of the research Trust,
and she was so helpful and welcoming. She steered me onto the right path to deal with my doctor and possible alternatives to get this treatment.
I recently met with my gi doc (well his registar more like ) and requested she speak to my consultant. I gave her a complete printed out copy on the subject/ treatment to give him.. Im still waiting for him to reply to me..since last week...hoping he will give me it on the NHS...If not i will get a private doc and pay £25 -£30 a month and get it privately...and if thats the case then sod him !!
I would appreciate hearing about anyones experiences and or progress with LDN for mc..guys...
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.
Hi Angy, and welcome back! I joined the forum last April , and shortly after that you kind of faded out, but I remember, you're the lady from Scotland, right?
Yes, I used LDN to try to beat this disease, and in a nut shell, I have to say, yes, it helped me ( a lot at first) but after a while, less so, maybe because all my other food intolerances started surfacing once I was gluten free. Basically I took it for about 4 months, starting out at 1.5 mg per night and I actually worked up to 3 mg. Perhaps I am impatient, but after an initial huge reduction in frequency of Bms (from 12-15 per day down to 2 or 3) that number of Bms was creeping up and it seemed I was not seeming to get any better, maybe even worse. I never did achieve "normans" just slightly less than D. So I decided to try entocort instead. Incidently, I went off the LDN about couple of weeks before my entocort arrived and I got way worse, so I know now it was helping, just not as much as I would have liked. I went back on it again for the last week before the Entocort came and things improved again. But improvment with it was not as drastic as the Entocort which brought me immediate relief with in a day or so, the LDN is more subtle. But for anyone who cannot take, or doesn't want to take Entocort, I would certainly recommend that they give LDN a try. LDN really has virtually no side effects and I slept so well on it!!! I miss those nice sleeps!
If you have any questions about it, please feel free to ask me on here or in a private message.
BTW if you order the LDN from alldaychemist.com in India, you don't need a prescription and it is a whole lot cheaper although it took about a month to get to Canada through the post. The only catch is that from them it comes in 50 mg pills that you have to dissolve in 50 ml of distilled water, keep in an amber bottle in the fridge and just measure out your dosage in a medicine spoon or eye dropper each night. A bit less convenient but manageable.
Cheers,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Tex thanks for hunting those threads down....Saved me a huge search..
Linda that's interesting that it worked to start with.you mention that you hadn't been gluten free previous to the ldn treatment. I'm wondering about that cos I've been gf for 2 and a half years. I'm hoping the ldn will build up my immune system to hopefully prevent me becoming prone to infection and viruses etc. Also to hopefully help with the mc symptoms.
I'm prescribed pentasa but stopped taking it regularly...I only take it when I get a bad flare...basically I control my mc with diet. I hardly eat much but I have maintained my weight..my diet isn't too bad really... Good luck with the entocort and I hope you have more hood days than bad and hopefully remission.
Angy, that is a very good point. You know, I bet the ldn would be very beneficial for you. I had not been gf, corn free, tapioca or egg free, only casein free (for 7 years ) and tho I went gf just prior to starting the ldn ( a few weeks) , it took me quite a while to identify the other things, so I was still eating all kinds of things that I was intolerant of. As long as I ate ONLY rice, pork, applesauce and carrots I was actually pretty good. It was lunch and breakfast that got me into trouble, so I was constantly going into a flare. i just figured out the eggs in the last month.
Once I have reduced the inflammation with the entocort, and stabilized my diet, I may just may try ldn again for maintenance.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
You can eat pork? I have never been able to digest pork it gives me serious stomach cramps and that was before being dx with mc..If i ate pork now id be ill....id have a bad time for several days.....its possible the pork could be your culprit causing your flares...but its not manifesting as a flare until later on...
Thanks for your response , Lyn. I don't think pork causes me problems.. (it seems to me while eating it I have had one of my few normans, before Entocort) but I will look into it. I remember people mentioning beef causing them problems, and some cannot eat chicken, but your comment is the first I remember about pork. But then... maybe I am mistaken!
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
Hi Ashley
Im in the process of waiting to hear from my gi doc to see if he will give me ldn on the nhs...I saw him in October and it is now looking that he isn't going to contact me to discuss this...i have waited 8 wks to hear from him and I am not waiting any longer.. I am rather annoyed about this. I am now going to meet with my gp next week to discuss this...and get her to sign a letter for E med online , who will prescribe ldn for me privately. Hopefully I will start this by the end of the month...I contacted the ldn trust and they are supporting me to get on this drug....I will be posting soon though when I start it...I also need to check in to the forum fir an update soon. I have not posted for a while...
I have been meaning to do another post about my recent thoughts on LDN and I might as well do it on this thread. I had a thought that LDN would be good to use while tapering off Entocort. I think once the bulk of the inflammation is gone in the gut, the LDN would be able to keep it down. It seems to me it's strength is in preventing a reaction, by strengthening the immune system and preventing the body from reacting in the first place. I don't think it can do much to heal pre-existing damage.. only as much as the body can do on it's own, slowly. So I did a little more research, and wrote to a pharmacist in the US (Skip's Pharmacy) who is considered an "expert" and does LDN compounding) to ask it if can be taken at the same time as Entocort. He said he believed so and gave me the name of a US researcher ( Jill Smith) who has used it with patients tapering off Entocort. I found her studies and she did use it concomitantly. Then I was reading on an MS site that LDN isn't meant to be a stand alone drug.. it is meant to be used with other treatments, to support them (such as diet). This made sense to me in terms of how I knew it was helping me, but it just didn't seem to be strong enough. I was very new to the diet and my gut certainly was not very healed.
So to sum up, I really do believe LDN would be very useful for people with MC once they have healed their gut (by whatever means.. diet, Entocort, etc.) in supporting and maintaining remission. I intend to start taking it again when I am ready to taper off Entocort.
Regards,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
) and requested she speak to my consultant. I gave her a complete printed out copy on the subject/ treatment to give him.. Im still waiting for him to reply to me..since last week...hoping he will give me it on the NHS...If not i will get a private doc and pay £25 -£30 a month and get it privately...and if thats the case then sod him !!
