Who is a member of the Yahoo LDN Group?

I just became a member and I'm having a really hard time navigating the site.  It's nothing like Healing Well where each disease/condition is separate.  Also, every single post is listed rather than being put under it's original thread.  Even when searching under UC or colitis, it's hard to find any information.  I end up getting frustrated when searching the site and haven't found much useful information.  Any tips?

I just started LDN on Tuesday.  I have been off of 6MP for almost 2 months and I think my body is finally saying "hey, we needed that drug".  It never worked to put me in full remission but I'm beginning to think that it was helping in some ways.  Earlier this week, I started feeling flu like and just yucky.  Now I'm having joint pains and I think I have an eye infection.  Obviously I want to stick it out with the LDN but instead of insomnia, I'm feeling really tired.  Overall, I just feel like total crap and I'm sick of it.  I guess I'm just whining and venting.  I wish I would've started on the LDN sooner, maybe I could've caught my UC symptoms before they got to this point.  Any words of encouragement would be appreciated. :)

Thanks for the response!! Yes, Dr. Sullivan had me start on 1.5 mg. for 2 weeks, then 3 mg. for 2 weeks, then 4.5 mg. thereafter. It's so encouraging to hear that you're doing so well. I think I'm freaking out because my UC symptoms seem to be coming out all over my body (eyes, joints, etc.), plus I'm having a lot of blood. I just don't feel well in general. I'm totally prepared to stick it out but I'm pretty sick of feeling sick.

Are you doing any diet changes, yeast meds, etc. besides the LDN?

I just had 66 new messages on my email from the LDN group, I've already checked it a few times today so there are just so many posts to go through. Thank God I set up a dummy email account on Yahoo so the emails aren't going to my regular email address. lol.

i know it's a stretch, but anyone know of any GI's in Arizona who are familiar with and will prescribe LDN?

Here are doctors that prescribe it: (I did a phone consultation with Dr. Sullivan)

http://www.ldners.org/resources.htm

Then here are pharmacies that will compound it if you don't have one in your area:

http://www.lowdosenaltrexone.org/

No problem, I wouldn't even know where to begin w/finding it on the Yahoo Group. lol.

Miss-I'd love to hear what your symptoms were when you started LDN and what they are now if you don't mind sharing. I've been on LDN for one week now at 1.5 mgs. I'll increase to 3 next week.

That's great Miss!! I haven't had sleep issues either. As a matter of fact, after the 3rd dose of 1.5 mg., I was so tired, I felt like a zombie. It only lasted that day and by the next day I was better, it seems that each day is better. I'm hoping that when I increase to 3.0 mgs next week, I won't get that zombie feeling again. At least I'm prepared for it if I do and will plan for it on a day when I can be home all day. I'd rather have that for a day than insomnia. Last night was the first night in a few weeks that I didn't wake up in the middle of the night to go to the bathroom. YES!! lol

bookworm21-Dr. Sullivan said "nothing gained, nothing lost" about trying LDN. I agree that it can't hurt to try it. It's very reasonably priced and it's worth a shot...definitely before trying Remicade or having surgery.

I was having a lot of reactions to the remicade from the very first infusion. They even gave me benadryl before each treatment. I worked very well for me until my first monthly cycle kicked in then all my other issues of D with bleeding came right back so I figurred it just wasn't worth it. It had only been two weeks after my third treatment and the D and bleeding started back up.
In the three treatments I had, I got oral thrush twice.
I had terrible joint pain that just about went away right before the next treatment then came right back after each infusion.
My vision changed.
I got a rash called petechaie on my stomache.
I got a rash on my face, small bumps.
My teeth were very sensitive and my hair started falling out in clumps.
I ended up losing over half of my hair but that could have been from me being so sick too.
I'm pretty sure if I would have started on LDN before seeing the gastroenterologist I probably would have been much better off and not even ended up in the hospital. I had a colonoscopy done in June when I started seeing them, they put me on asacol and pred. I went to the ER the third week of August and my colonoscopy there was at least ten times worse than it was in June, severely fried, they couldn't even go half way, afraid it would perforate. This was just two months from the time I started under these "specialists" care. I really don't think I would have ended up like that had I been on LDN a long time ago. Oh well, live and learn.

Good luck in whatever treatment you decide, I definately would try LDN though before resorting to any surgery.

Take care,

Miss

Hey bookworm,

I just took those sides from remicade as a sign of my body rejecting the poison that it truly is. At this point I feel that LDN should be the first standard form of treatment for crohn's/colitis, etc. As with any drug, it does not work for everyone but from all the studies I've read, it's odds are better and sides less than anything else that's being prescribed.

I personally feel that the ultimate goal of the gastro I was seeing is to have their remi room filled each morning and afternoon. If everyone else's insurance was paying out the five grand per infusion like mine was then they are getting forty grand a day!

I pay approximately twenty-five dollars a month for LDN including the shipping. Here in the US anyway, when it comes down to it, it's all about the almighty dollar, ya know.

When I later mentioned LDN to a nurse at the gastro's after I stopped going she knew all about it. So why on earth didn't they prescribe that first? We're local to Hershey Med where the crohn's study is going on so they know all about LDN.

I don't feel that the people I was seeing truly had my best interest at heart.

Whatever happened to first do no harm? When you look at all the warnings on remi there's no way that it's doing no harm, especially in the long run.

This is just my personal take on the situation and biologics. The thought of suppressing the immune system just doesn't seem like a logical plan any way I look at it.

Good luck,

Miss

Miss, I have one more question: How are your energy levels on LDN? Even though I'm in remission, I am exhausted all the time.

How is everyone else doing on LDN?

Bookworm, my energy levels have been great since I started LDN. I'm assuming from the endorphin boost. I also sleep much better now, sometimes get up once to pee. I'm sure more sleep helps the energy levels too.

I was still anaemic when I started LDN and may still be but feel pretty much back to normal. I'm not sure if I really know what tired is though. The doc in the ER couldn't believe I was still functioning even semi-normally since my labs were so so bad.

I think from being a full time homeschooling mom to three all these years has numbed tiredness in me. I just keep doing because something always needs done, kwim?

I also felt pretty good the first few days after each remi infusion, then shortly thereafter was when the joint pain set in.

I've been having some stiffness in my joints the past few weeks but that started right around the time I totally taperred off the pred so I'm hoping that subsides soon or I'll have to get that checked out. I was on LDN for over two months before this stiffness started so I don't think that has anything to do with it.

Miss

I've hit the two week mark on 1.5mg LDN today, and tonight I increase to 3.0mg. After two weeks I've found that my energy level has increased and GI distress has been reduced, but I'm not giving LDN all the credit. It could be placebo effect, diet change, or just coincidence. I have my hopes though. I've tried other things that produced the same results short-term, but fizzled out long-term. My doc says I should know if it doing its thing after I've been on the normal dose (4.5mg) for a month or so. I'm still working my way up to that dose, hopefully I'll keep improving. I actually had enough energy to go to the gym a couple of times this week!