I've been on LDN for about 6 months now and my UC symptoms are somewhat better. I seem to have more energy and I'm able to eat more like a regular person. It hasn't been the miracle that I was hoping...
Sorry to hear that the LDN wasn't the miracle drug that it claims to be for you. I agree with glamourgirl though...better to have tried and then ruled it out. You never know when something will help...
I'm not sure if this is an alternative treatment per se, but I've been on LDN (low dose naltrexone) for a couple of months now and my GI tract hasn't felt this good since before my dx. I've still got...
I'm pretty sure that it was a couple of bacterial infections that induced my colitis. I got giardia while rafting about 4 years before my UC dx, and then I got c diff four years later. both...
i'd recommend the immodium as well. Start with the max dose. When flaring I take immodium when flying or other times when going to the water closet every twenty minutes isn't feasible. Good luck, and...
Most docs will only test for c diff if they think there is a reason that you may have it. I went through two months of tests for everything besides c diff because I had none of the risk factors...
Glamourgirl, I think the exhaustion is tied to the UC and not the LDN. I've been dealing with tiredness ever since diagnosis. There is some thought that the tiredness is related to the 5ASA I take,...
When I've got the extra energy to lift I really have to watch which exercises I do. A lot of times I end up farting when exerting myself, and that can be a little embarassing since my gas stinks to...
I deal with the fatigue by working early and hard, with little inactivity during my day. Then i come home, take a nap, wake up and do dinner/computer/TV stuff, then early to bed. Ideally I'd be going...
Not a guarantee. Every person is different and reacts differently. Some folks have been able to maintain remission taking the same dosage of the same drug for years, while others seem to run through...
I'll give you my experience. Vit D has helped to combat fatigue, and vit E has helped soothe my intestines. Digestive enzymes are helping to break food down, and the ever present probiotic helps in...
I've been on LDN for a little over amonth now, just started the 4.5 dosage last night. Since I started it my UC type symptoms have been reduced, and I am really happy about this. Hopefully I'll be...
I took VSL#3 with improvment for a couple of months, but after a round of antibiotics, the VSL#3 never regained its effectiveness. I've since switched to a probiotic I was taking earlier....
I saw an alternative doc and he did a blood test for my vit D levels. I was deficient, and he upped me to 5000 IU/day. This happened at the same time as some other med changes, but I've been feeling...
I couldn't agree more with you. Exhaustion has always been the absolute worst symptom for me as well. I get off work at 2:30pm most of the time now and I go home and crash for a couple of hours, eat...
Lisa, One thing that you might also consider would be keeping a food/medication journal. I know that it seems like a pain in the butt, and it is, but you get used to doing it and it really helped me...
Thank you to the people who have contributed so far. Seems like most of us are having some problems accepting things, but we all have great ways to remind ourselves that it is what it is. Anyone else...
Hey all, I've noticed that a lot of members have some sort of inspirational saying in their signature. I'm interested in gathering a bunch of them both for myself and so I have little bits of...
Lisa - I'm glad to hear that you were doing better before the recent speed bump. Recovering from a kidney removal and UC must be really tough on you. I tried Concerta for a little while because my...
I change things up. I'll use metamucil caps for a while, and then I'll use Miralax for a few days, and then back to the Metamucil. Seems to keep things regular. The Miralax isn't necessarily a fiber...
Glamourgirl, Hopefully you'll kick the cold soon enough. I think it kind of funny that we are getting opposite side-effects. I've been needing less sleep ever since I started LDN. I've almost been...
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...
Does your insurance company have a website? If so, they probably have a list of prescript ion meds they cover. Or you can call their customer service and I'm sure someone there could tell you whether...
Prednisone has always worked that fast for me. I'll sometimes take one pill on rare occasions to get me through the day. It is truly a wonder drug, at least for me (and apparently for you!)....
Cfromutah, I appreciate the offer to help me balance out my diet, but I came to the realization that the diet just isn't for me. If I objected to the spinach as i did, it is unrealistic of me to...
I started juicing while in a flare. because I figured that fruits and veggies are healthy and they contained some nutrient i was missing because I wasn't eating them. For me, it wasn't the...
My regular GI doc wouldn't prescribe LDN, despite doing some research on it, so I found a doc who would. My GI said that the benefits vs. risks didn't make it any better or worse than the meds he'd...
I was a smoker for over 13 years myself. i tried quitting many times, but no matter how long I was able to stay off the cancer sticks, I'd always go back. I was doing a lot of hiking/climbing then...
I've been taking the capsules for around 6 months. At first, when I found the right amount for me (8 caps a day) it was working great. When I tried to reduce the amount I was taking, VSL#3 just...
Eva Lou - Luckily I had been working full time in OR with insurance the winter I was diagnosed, and when I quit that job to return to YNP I was using my COBRA option, but that was extremely...
I heard about the coconut thing and I gave it a try. The only thing it did was increase my calorie intake because cocnut milk has lots more calories than the soy milk I was using. Plus I use coconut...
Previous to my dx with UC I was doing seasonal work with the Park Service out in Yellowstone NP. After I found out about my new disease it really threw a wrench into the whole thing. Needing health...
Thank you glamourgirl...you just saved me a headache of trying to sift through the Yahoo group!...
Hey, why don't you check on the Yahoo LDN group? LOL I'll take a look at the Yahoo site in the morning for you to see if I can find anything. One thing you might think about doing is gathering some...
I'm a member of the LDN group and agree that it is really hard to follow. I spent a few hours tryng to get the info I wanted, and eventually gave up. I kept seeing somewhere (either here or at...
mjw - It sure sounds like you are having a really tough time right now. If I remember right you just started the LDN in the past month, as well as starting the pred recently? Be patient and let one...
I got this email the other day and I was wondering if this study (poll?) was okayed by the HW admin? If it wasn't, isn't this considered spam? I'm not trying to hate on the girl doing this project...
It seemed like the spinach/sunflower diet was working for me, and then after about 6 weeks, I stopped making progress, and started back into my normal crappy UC symptoms. pb4 had it right, what works...
I hade an appt with a doc who will prescribe LDN, and I got my scrip, but he also loaded me up with supplements. My goal is to be taking fewer pills, and this doc wants me taking more pills, more...
I smoked for around 14 years and never had any digestive problems during that time. After I quit, I started getting blood in my stool, but I assumed it was hemorhoids. When my UC finally flared bad...
1. Anything with a lot of sugar (ice cream, pastries, donuts, cookies, jams/jellies) 2. Greasy foods (fast food burgers, potato chips, etc) 3. Eating too much dairy, including cheese and yogurt 4....
Unless I'm in a really bad flare, I rarely bleed either. More often than not, I just get frequent cramping, urgency, gas, mucous, and diarhea...or the flip side of that, I'm constipated. Even during...
Some probiotics aren't killed off by antibiotics. One brand I know for sure that is okay to take with antibios is Florastor, which is a yeast and not a bacteria. VSL#3 state on their website that...
Thank you Melissa. I'm actually right in Lakewood, so I'll give them a ring in the morning. Hopefully this will do the trick for me. I'm really sick of being sick....
mjw82704 - I'm a fellow CO resident (Denver area), and I have been unable to get my GI to prescribe LDN to me. Did the Yahoo group provide you with a list of doctors names, or is there just one they...
ktsl, it sounds like it might be UC to me as well. When I first began showing symptoms, it was blood in my stool and gas cramps, but I didn't have diarhea, so I assumed it was hemmies. This would...
I hate the smell, but that Vicks really does the job to clear up the sinuses! Hopefully this cold will pass quickly and not cause any distress to your intestines. Feel better soon....
I've never used the Asacol Foam enema before, but when I was using a hydrocortisone enema I found that if I used less than a full dose I was able to keep it in longer. Maybe try a half dose if...
If you have questions about the diet, ask 'em here....
Thanks for the info. Sherry, I hope you find out what else is going on. It's no fun knowing that if you stop a med you'll feel horrible....