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Low Dose Naltrexone helps autoimmune/chrons/uc and numerous other disease

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Posted 2/9/2009 4:20 AM (GMT 0)
Does anyone know if the FODMAP diet really works? My bloating and pain is intolerable. I need help fast. Please, anyone. Have any ideas how I can ge some relief?

soalone
Posted 2/10/2009 3:12 PM (GMT 0)
My biggest complaint if you've followed some of my post was inflammation in my rectum making my rectum come out or poke out when I would stand for more than 3 mins. I went to the hemmroid doctors (2) and they said it's not hemmroids it's inflammation. It was very, very painful, weeks upon weeks I would just cry. Well I've been on LDN for 2 and half weeks now and I don't have that inflammation anymore! I feel better each and every day. I still have some blood and my stools are not formed yet. I suspect a yeast problem in my colon. I'm only on 1.5mg, that's the lowest dose of LDN and I'm starting to go to 3mg this Sunday for three more weeks then I get the full dose of 4.5mg for the remainder of the time. Dr. Sullivan said this is not a cure, it helps with the symptoms and we still need to get to the root of the UC cause. I have to say this medication is so much better than any, any, any UC med I have tried b/c I'm not having any side effects at all! I feel good during the day and I'm progessively getting better. It's amazing to me. My Doctor, who does phone consults is Dr. Sullivan from Mechanicsburg PA. He said I would feel better with such conviction and he was right. Out of all the docs I've seen, which has been 14 in 4 years, his word was true. I'm so, so, amazed. He helped me and now I have to do my part in my eating habits. Basically SCD diet. I'll keep you posted.

Posted 2/10/2009 4:25 PM (GMT 0)

sounds pretty good! But I'm confused- what's the deal with GI's & this med? Why won't they prescribe it? A lot of drugs are used off-label, so I wouldn't think that would be the issue. Do they feel it's quack science? If it works so well, why won't they use it? I'm going to ask my GI about it when I see him next- not that I'm super interested in it yet, but at some point, sure. And therearemiracles- what does your GI think about you taking this?

Posted 2/10/2009 4:30 PM (GMT 0)
I sent a 16 pages fax to my GI and she didn't even call me back, I called back the nurse who relayed my message of "she knows nothing about this drug and does not feel comfortable prescribing it" yet I feel there was attempt made to look into it either. When I'm a 100% better and off LDN and in remission, I will contact her. This is the only medication I have taken for my UC where I feel wonderful and I've made progress in a little as two weeks. You have no idea what pain and depression I was in with the inflammation in my anus, words can't describe but I've had it for four, very long years. I couldn't stand more than minutes without it prolapsing.

Talk to you soon.

Posted 2/10/2009 5:58 PM (GMT 0)
I am very interested in LDN as my medications, so far, have only worked just about well enough to help me continue with work. Surgery looms!!

Does anyone know what the status is with LDN in the UK? I have a colonoscopy tomorrow, Wednesday 11th. Feb, so I am sure the subject of surgery will come up. I am in no mood for this and want to hit my consultant with LDN. I am prepared to stamp my feet over this. In the UK the NHS is very scalpel-happy and I want to get them consider other possibilities first.
Posted 2/10/2009 7:01 PM (GMT 0)
I'm so glad things are improving for you. I have my phone consult w/Dr.Sullivan on Thursday. I'm really nervous that the LDN isn't going to work after every other drug failing for me. I'm trying to keep the faith though. I can't wait to hear more updates from you and I'll let you know how things work out for me after talking to Dr. Sullivan.
Posted 2/11/2009 9:58 PM (GMT 0)

Hi Glamgirl, I just wanted to say Dr. Sullivan's will ask about a compounding pharmacy do you want to use and I use the one he recommends Dr. Skip's , Skip's Pharmacy from Boca Raton Florida, they were so nice to work with! They were quick as well. I asked several questions and talk to Skip and he's very nice and very knowledgable. I thought I would recommend them as well. They seem to have the most experience in compounding LDN. I hope this helps. I had great BM's this morning. I hope it continues. I've started Candex for yeast two days ago, I don't know if that is it or I ate sprouted grain bread and maybe this was a bulker for me, I don't know which or maybe the LDN is working more on the inflammation. I'm feeling better each day.

Posted 2/11/2009 10:45 PM (GMT 0)
I'm glad that you like Skip's, I was planning to use that one too.  Were you tested for yeast issues, is that something that Dr. Sullivan brought up to you?  I've often wondered myself if I have yeast issues.  I did that spit test but I wasn't sure if it was a true indicator..lol.  My consult is tomorrow, I'll keep you posted.
Posted 2/12/2009 2:36 PM (GMT 0)

Yes he suggested yeast to me. I'm taking Candex now. Yesterday I had a great morning, this morning bad. I have to figure out the trigger. I'm thinking eggs but I'm not sure yet.

Good luck with your consult

Posted 2/13/2009 2:15 PM (GMT 0)
I had my phone consultation yesterday. I should have the LDN by mid to end of next week. I thought the consultation was very generic, he really didn't seem to discuss my issues/specific symptoms. All he seemed concerned about was a gluten free diet and a yeast issue. I'm pretty sure that foods do not trigger the disease for me. I told him that I've had allergy tests and his response was that they were probably inaccurate. It sounds like he gave the same spiel to you about yeast and diet changes. Someone from his office called me back a few minutes after my call to ask a question and I could hear him in the background talking to someone else - saying the same exact things he was saying to me. I found it to be a little irritating AND ridiculous that my 15 minutes with him cost over $100. That means he makes over $400 an hour to bascially say the same things to everyone and not treat them individually.

At any rate, I'll try the LDN and explore the yeast route but I really don't think I'm going to change my diet at this point.
Posted 2/13/2009 2:23 PM (GMT 0)

Hi GlamGirl,

I'm sorry you felt that way, I too at first thougth it was generic. I actually said to him, what you're telling me I've heard a 1000 times and I feel I've been down this road before and he said, I'm sure you do, but I will help. He's probably knows the the LDN is working for those with UC, so he's wanting you to get on it ASAP to help relieve symptoms, then figure out what is causing the UC. Now, could mine be as simple as bulking up my stool with cheese? I noticed when I eat a lot of cheese my stools are more formed. I've been avoiding all dairy and carbs(grain) for a long time. I start my second capsules tonight, what I am finding is I wake up in the morning, I have energy all day and I feel good no aches or pain. I use to wake up, want to lay in bed all day and feel sick all over. That was just the illness, through the UC meds on it, that would even more terrible.

Have faith.

Linda

Posted 2/13/2009 4:05 PM (GMT 0)
I have faith in trying the LDN, just not sure I have faith in the doctor..lol. I'll keep you posted on how I'm doing once I start it. I'm really worried about the loss of appetite side effect. I suffer from that horribly now, it's a struggle for me to eat anything. I'm already underweight and don't want to lose anymore weight. Have you noticed a change in your eating habits since you've been on it?
Posted 2/13/2009 4:14 PM (GMT 0)

Oh I gotta tell you, I'm 5'7 116lbs and I feel so good, I'm eating a lot. Seriously, there is no concern for that with me. I'm hungry all the time, I think you could gain weight on this LDN not lose it. Now I feel like I want to watch how much I'm eating, but then again my body has been starving for so long, it's happy to eat. Did he mention about drinking? I'm leaving for vacation next Saturday I would love to have  a margarita, but he said no drinking, you'll get sick. The dream, I dream all the time and work up once in the middle of the night anyways, so this has not disrupted my sleep any. I have to say all the way around, I've had no side effects and I'm feeling good! I actually work out every day now, where before I couldn't even function enough during the day to make it to the gym. I'm happier too every day it seems. I have great positive thoughts about my health now. I feel like, even though my body is "stuck in over drive with my immune system" we're way better off then someone who can't fight a dis-ease. We have what they call a "cleansing dis-ease" there's nothing bad that stays too long in our bodies. You can get on the low dose naltrexone website and talk with folks who are on the medication, I found it to be helpful. I remember when Miss from this forum called me, I asked to speak with her, and what a sweetheart, she did call me and we talked for over a hour and that night was the first night to take my medication (I was scared and I live alone) I thought what if I need someone, feeling anxious is just who I was. I don't feel as "scared" as I did too. I really thinks it helps all the way around. It's only been 3 weeks, I up my dose tonight so hopefully I continue to improve. I still have bleeding, but no urgency. I can't wait to be able to pass dry gas. That will be the tell all for me, that I'm fine.

Blessings, Linda

Posted 2/13/2009 10:30 PM (GMT 0)
It's so awesome to hear how great you're feeling!!  I'm so happy for you.  It's very encouraging to hear your progress!! 

I'm 5' 7" and weigh 125, my normal weight is about 135 so I would hate to lose anymore weight.  I'm happy at 125 and could maybe stand 120, but nothing less.  He did tell me that alcohol could make me sick.  I hate to admit it but I am a big wine drinker.  Me and my hubby drink wine every weekend.  I wonder if being on such a low dose would really make us sick.  If you wanted to try a margarita on vacation, maybe you could try a drink or two before you leave to see how it effects you.  I was thinking of calling Skip's to get their take on it and just see if a few drinks would make me sick or if it would have to be A LOT of drinks..lol.  What do they mean by sick, did Dr. S. say?  Is it puking, yucky or just feeling hungover?

I've been dreaming every night for the last few months so I'm hoping the LDN doesn't do much in that regard.

Did Dr. S. say how long you'd be on LDN, that was something I forgot to ask him about. He said we'd talk in the spring but I wasn't sure if I would stay on it forever like UC meds or if we stop taking it once we feel we're well enough to be off meds.  I'm not currently on anything besides natural stuff.  I stopped taking 6MP about a month ago.

Posted 2/16/2009 2:17 PM (GMT 0)

Hi Glamgirl,

No Dr. Sullivan didn't say how long I would be on it. I'm up to two pills a night now. I'm still bleeding, but like I said I feel so much better, no side effects. I asked him will this medication work so that my body will heal itself and I won't have to be on medication, he said that's what I'm hoping for BUT we need to get to the root of the problem, so that's why I'm doing allergy testing. Last week I had some formed bm's and nothing since then. I can't figure out what I ate or didn't eat that help me.

How did you do on your first night? Were you nervous and didn't sleep much, if you did, that's normal.

Linda

Posted 2/16/2009 2:25 PM (GMT 0)
I haven't gotten the prescription yet. Skip's said it was going to be mailed on Friday so I should have it by mid to end of the week.
Posted 2/17/2009 6:39 PM (GMT 0)
I got my prescription today. I called Skip to ask him about the alcohol thing. He was very condescending with me, and quite frankly I thought he was very rude. He didn't answer the questions I had because he was too busy being rude. I called Irmat Pharmacy in NY and the person I spoke to was very nice and was able to answer all of my questions. I get so sick of dealing with doctors and pharmacists that treat people so rudely. It's bad enough having this disease but to have to deal with mean people on top of it makes it that much harder.
Posted 2/17/2009 7:13 PM (GMT 0)

Glamgirl, I'm so sorry you were treated that way. I personally spoke to him and then some assistants on several occasions, I never had that problem. Just remember when people are that way, we need to stop a say a pray for them b/c something in their life is not going right. You are the bigger of the two, so instead of being snippy back (which I'm sure you weren't) kill them with kindness and maybe when they get off the phone and realize how they treated you, you may have helped the next person who called in. I know it happened to you, but maybe you can take more than the next person who called in. I too have to check myself when people do this to me, b/c I want to boss back and trust me I have, then I feel so bad for being rude back. But anyways, I have heard you can have a drink or two, but I wouldn't do too much. I just feel like this, however I can help myself I will do it. When you've been sick for so long, you'll do anything or try anything, so if it's stay away from alcohol, I'll do it. Get sparkling grape juice, as silly as it sounds, it takes great and put it in the wine glass and you trick you mind sort of.

Let me know how you are doing. Stay well, be a bright light, we need more angels on earth!

Linda

Posted 2/17/2009 7:28 PM (GMT 0)
I definitely wasn't rude back to him, it's just not my nature. I think I was too much in shock by how he was talking to me..lol. I'll keep you posted on how I'm doing.
Posted 2/17/2009 8:30 PM (GMT 0)
I give you 2 kudos for putting up with these people- I was intrigued by this LDN, & plan to ask my GI if he's ever heard of it. I see him next week. After reading thru your posts, glamourgirl, about how you felt the doctor was just giving you his routine spiel, & how his assistant (or whoever, Skip) was so rude to you, it makes me wonder if these 2 aren't running some sort of scam. Unfortunate..... this may truly help people, but if they continue to treat people in this manner, it's doubtful anyone reading this will jump on the "Dr. Sullivan" bandwagon. It makes for interesting reading, that's for sure!


Posted 2/17/2009 8:50 PM (GMT 0)
Skip is actually the pharmacist that I chose to use, he's not affiliated with Dr. Sullivan at all. On the LDN website there are doctors that will prescribe it and there are compounding pharmacies who will make the drug. I feel bad now because I don't want to give anyone a bad name, I just didn't care for my experience with Skip. I called a different pharmacist from the LDN website who was very nice and was much more helpful. I also thought Dr. Sullivan was nice but it was hard to get a true feeling about him since I was paying him by the minute so I felt more concerned about my money than asking him questions. I did enough research about the drug on my own so I didn't really need much information from him, however, I would've been more comfortable if he would've talked more about my specific symptoms. If you read all the posts on here, you will see that Linda (therearemiracles) had a great experience with both Skip and Dr. Sullivan. There is no Dr. Sullivan "band wagon", there are plenty of other doctors on the LDN website that people can call.

I've had UC for 6 years and have had 4 doctors so far. I've had my fair share of bad doctors and nurses, in my last post I was commenting about everyone I've dealt with over the last 6 years. Having this disease has given me a completely different opinion of doctors, for the negative. I've been to 2 of the best hospitals in the country and still wasn't happy with the doctors or the staff. It's very rare, IMO, to find someone that truly cares about their patients. I'm still looking....... lol.

Good luck w/your GI. I left a message for my GI about it and his nurse returned my call and told me that he doesn't prescribe it because he's tried it in the past and hasn't found much luck with it. Hmmmm, he's willing to prescribe a drug that can kill me or cause cancer but he won't prescribe something with no negative side effects for me to try? It doesn't make sense to me!
Posted 2/17/2009 8:52 PM (GMT 0)

Hi Eva Lou,

I sent a 16 pages document to my GI and she had the nurse call me back and said "no I haven't heard anything about it, so I won't look into it" I was mad. At least look into since it helps people with Chrons too. It's so frustrating, b/c I even wrote, you could be a pioneer in your field, if you research this drug and get with the folks who've done the study and maybe you can help more people in your office. She just wants to prescribe the old stand bys and has no problem just prescribing and prescribing.  I've talked to (Miss) on HW, she's  taken LDN and she sees Dr. Sullivan in person for her UC but her whole family goes to him as a family practitioner. I talked to her on the phone and she really likes him. Ya know, sometimes people have a off day. I know Dr. Sullivan said the same thing to me as he did Glam Girl, but so did the 5 naturalpaths I went too and every GI. My rectum was inflammed and my one rectal doc said we have to cut those out, make a appointment, they're hemmroids.But when my inflammation is gone so is the swelling in my rectum. Now what if I went and had the surgery?  We have to go with our gut instincts. I liked what I read about LDN and so I'm trying it. Right now I have a little cold, which I have not had in 4 yrs since I was dignoised with UC b/c my body was fighting all the time. This is good, I've been told b/c my body is get balanced by the LDN where my immune system is not fighting all the time. If Dr. Sullivan wasn't cautious he'd say start right at 4.5mg but instead he asks us to build up to it and then get tested in the interium for allergies b/c he wants to know the cause, not just help the symptoms. I personally have not met the man, but he's doing fine by me so far. We'll see how it goes, I'm always the one to give the benefit of the doubt. You can run my over twice before I will say something  like ouch that hurt, maybe the third run over I might scream :) I do feel better every day. I can function every day. I can poo and sometimes it still hurts like hell, but I can go to work and have a great day. My mood is better, I'm not depressed, my eyes are clearer (the whites of them) my nails are improving, my stool has improved and has taken a step back too, plus no side effects that I'm experiencing. I'm clearing yeast, which I think I have a problem with and it was recommended by Dr. Sullivan to do a natural product instead of prescription, even though he could have wrote a script he didn't, he chose the mildest route on my body. I have pro's for him right now, I hope it continues. I won't get allergy, yeast, tested until 4/22/09. I will keep you posted. Linda

Posted 2/17/2009 9:44 PM (GMT 0)
I have no doubt that LDN works well- I've researched it myself on the internet. It's just the experiences you describe don't sound all that great. Anytime someone charges by the minute, it sort of sends up a red flag for me! Plus a phone consult can't really do justice- most docs like to take a look down there, via some sort of scope, before prescribing anything. But I'm glad you are getting relief, & hope it continues. Who knows, this may be the "next greatest thing" in UC treatments, & become widely accepted & prescribed.

Posted 2/18/2009 11:44 AM (GMT 0)
I don't like that he charges by the minute but I don't think he's doing it to scam people. I wish he charged "X" amount for a phone consultation with unlimited minutes. Even if it were $150 or whatever he wanted to charge, at least I would feel like I could spend time discussing my history and my symptoms. At any rate, I'm just glad that he does the phone consultations because otherwise, I wouldn't have gotten the drug. As far as prescribing without doing a scope, most of the GI's I've been to haven't done a scope before prescribing drugs. They usually start out by prescribing stuff and then do a scope. My current GI wanted me to start Humira only because my labs were horrible even though I felt good. There is no perfect scenario, I'm just happy to be able to give the drug a shot, I don't care how I get it.
Posted 2/18/2009 12:19 PM (GMT 0)

glamourgirl said...
I don't like that he charges by the minute but I don't think he's doing it to scam people. I wish he charged "X" amount for a phone consultation with unlimited minutes. Even if it were $150 or whatever he wanted to charge, at least I would feel like I could spend time discussing my history and my symptoms. At any rate, I'm just glad that he does the phone consultations because otherwise, I wouldn't have gotten the drug. As far as prescribing without doing a scope, most of the GI's I've been to haven't done a scope before prescribing drugs. They usually start out by prescribing stuff and then do a scope. My current GI wanted me to start Humira only because my labs were horrible even though I felt good. There is no perfect scenario, I'm just happy to be able to give the drug a shot, I don't care how I get it.

Glad there's another option out there to explore. It's really sad though if you can't get a doc to read some research. My next study visit is on Monday. I'll probe on the LDN with my specialist and see if they have any experience with it.
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