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Naltrexone

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Naps22

Guest
Rob, do you think it's a placebo effect? If your BM's are normal and you're only going 2-4 times a day then it is NOT a placebo effect. It is working.
 
From your description of Remicade, it sounds more likely that it produced a placebo effect.

Doctors many times attribute a placebo effect to any treatment they consider, out of the mainstream. How you convince your body to produce solid Turds based on Placebo effect is beyond my comprehension.

Either that or divine intervention. It's a miracle!

Dan
 

Kev

Senior Member
Unfortunately, the placebo effect is called that because on occasion it does work.

Simple sugar pills or other substitutes that should have absolutely ZERO effect on a persons condition CAN/DO provide positive results. I've read studies where the placebo worked in excess of 20% of the cases. The body is a marvelous thing. It is a medical mystery/marvel how something like this can occur. But I don't think the placebo effect can be applied to someone taking a drug with a proven record of effectiveness. To my way of thinking, that beast just does not exist. So, if you were experiencing improvement on the drug, it was the drug doing it. Whether consistently or not, or whether forever or not, that's another story. Even my beloved LDN is not bulletproof. If I get ill will a cold, (bad) or flu (worse) my overall situation declines. But that I put down to my immune system being overtaxed, and when you consider it, our immunity is dependant on the health of our GI tract... which is not great to begin with in our case. Which only brings me around to my final point... don't combine LDN treatment with any immuno suppressors, that would be counter-productive.
Anti-inflamatories are OK, anti-biotics should be done well in advance of any LDN treatment (I would speculate, and it is pure speculation, that anti biotics would delay LDN from kicking in), and that pred, remi, humira or even cimzia would just combat any chance of LDN working for you. The only other option I have seen is on the lowdosenaltrexone website... where they advised folks for whom LDN had not worked to try it again in conjunction with the SCD diet. I'd considered that as my second choice if the LDN hadn't worked first time out. It did. Dodged a bullet there, as I didn't want to go SCD, and I wasn't sure if my GI would trial me on LDN a 2nd time.
 
I feel there is some value in the placebo effect. Perhaps not with serious problems like Crohns, but the mind is definately a powerful thing and the body does listen to it. So, if the mind is saying 'This pill will make me feel better' then it can likely have some effect even a sugar pill (as long as the person doesn;t know.

I'm no expert here - just thoughts really. I also wonder if it works the other way in the sense that you are given some meds that you are not comfortable with and worried about side effects etc, then I'd say you are more likely to get these side effects as you have talked your body into getting them.

Possible?
 

Kev

Senior Member
There is strong evidence to indicate that the power of positive thinking can N does play a major role in recovery.. and that the impact of negative thinking can indeed worsen your odds, even your outcome. Why? Auto suggestion, self fulfilling prophecy, negative vibes... I don't think anyone knows how/why it works, but I've seen studies thru links posted on here that show significant differences between those who approach major health crisies with a positive attitude versus those who take a defeatist approach. There was even a study on how those who were pessimistic by nature could improve their health outcomes by simple psychological exercises. Anyone else recall that?
 
Since I've started the LDN placebo effect topic I might as well give you my thoughts!

I'm probably one of those people just like you who in a desparate plea has tried all the "alternative" treatments. One of those being "positive thinking" or mind over mater. Like other treatments I did my research and tried many techniques but never had any real results. I have no regrets trying different things because I believe you learn something in any type of treatment.

But starting LDN has truly been a game changer for me! The fact that I've been able to get off of prednisone and have had no signs of a flare is remarkable. My energy level and hemoglobin numbers are up and I've only been taking it since mid May 09. So I'm at 5 months on LDN...could it still be placebo effect? I think not...since I seriously had doubts about LDN at the start. However, time will tell but at this point I would be foolish to stop what I'm doing!! BTW the fact that I'm also following SCD diet is not even considered when I speak to my GI....even though I keep telling him I'm doing the diet!

RobK
 
That is the big hole in the placebo effect thing. It happens under very specific circumstances.

For instance, when I was having my burning stomach problems, I was using a frequency method of killing suspected bacteria. These frequencies are specific to any given pathogen. I ran hundreds of different frequencies with no response to any of them. Finally I ran across one that made my pain go away. At first I wrote it off as a coincidence. It could not have been a Placebo effect or frequency number one would have made me feel better.

Repeatability is the hallmark of an effective treatment, so I used this many times. Each time it made my pain go away for a day and a half. Then it would come back.

So now I am thinking it is not killing a pathogen, it is just having a therapeutic effect. Later I found out that H-pylori is pleomorphic. It has several forms, and my method was likely killing only one of them. I also found out that at least five days of treatment is needed to eliminate all of it. I ran it for six days and my problem was gone for good.

I do not know how that particular situation could possibly be a placebo effect.

And as you mentioned, that you also used several other methods that did not work. Why no placebo effect from them? because you had no expectation that they would work to begin with. Why would LDN be any different?

The placebo effect is real, but it can only happen under certain circumstances, and you can rule it out by repeatability, and past history using other treatments.

The placebo effect is also short lived. You will not get better for months and years based on it.

Dan
 
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Naps22

Guest
Apparantly LDN suppresses your appetite, not a big fan of this :(. Makes me seriously want to reconsider even giving this drug a shot.
 
I have not heard of the appetite suppression effect before. I can't tell any difference, but I also am more careful about what I eat, but this is a conscious effort on my part.

Maybe I won't get over weight again? When I do, it usually means trouble.

Dan
 
Naps22 said:
Apparantly LDN suppresses your appetite, not a big fan of this :(. Makes me seriously want to reconsider even giving this drug a shot.
Not in this house - my son definitely is eating more since being on LDN and has gained some (much needed) weight. I think it has more to do with the fact that his body is not working so hard to produce extra white blood cells to fight infection so now he's actually able to put on some weight.
 
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Naps22

Guest
I'm still going to give this a shot, but if I start to notice any appetite loss or weight loss, I'll be stopping immediately. I'm 5'11 135 lbs I don't have any weight to lose.
 

Kev

Senior Member
Yeah, no appetite suppression here either, and I'm on it over 2 years now. Only side effect (except for some initial vivid dreams that, sigh, have since stopped) is that I loathe smoking... Naltrexone originally was designed to fight addictions, if one is addicted to food (some folks may experience a high from it) there might be the loss of the 'hi'.. but it should in no way cause a person to stop eating. Have you seen this weight loss effect documented somewhere, or is this anecdotal info? I imagine if someone was combining LDN and SCD they might lose their appetite, and probably lose weight too. Anyone been on the SCD diet?
 
Yep, Mitch is on the SCD, started in the middle of July, he had gained 3 pounds from about April - August, started LDN Aug 22, gained 9 lbs from Aug to September. He is still on SCD.
 
Appetite suppression??

Not sure where you heard that....I've done a lot of research on LDN and the only side effects I've heard of are sleep loss, vivid dreams and leg pains which by the way are not normally severe and usually go away.

I got a wealth of info from Skip's Pharmacy...check out thier web site and you can even email Skip a question.

RobK
 
Ldn?

It sounds like quite a few peole have had good luck with LDN. It seems there are less nightmare stories about LDN than some of the others. My question to all of you is, how does one convince their Doc to put them on it? Right now I am only on Pentasa 4x a day. We know that I should be considering something to suppliment that. But he wants to put me on Methotrexate. Not too fond of what I've read about it so far. I've asked about the LDN but he said not now. Is there some set protocol here?
 
RedSoxFan said:
It sounds like quite a few peole have had good luck with LDN. It seems there are less nightmare stories about LDN than some of the others. My question to all of you is, how does one convince their Doc to put them on it? Right now I am only on Pentasa 4x a day. We know that I should be considering something to suppliment that. But he wants to put me on Methotrexate. Not too fond of what I've read about it so far. I've asked about the LDN but he said not now. Is there some set protocol here?
I am working on this one myself. Not sure how successful I will be but now both my GP and GI have the information on LDN.

I guess all you can do is do lots of research and keep pestering them til they at least consider it!

Good luck
 
Hi RedSoxFan

Sometimes an openminded GP will prescribe the LDN rather than a GI, especially if you can take in the study from Penn State university and search this forum and others and print off some info on how others are doing on it.
Also, you can ask him if you can at least try it for awhile, if you are not in a flare or in danger of a blockage ask him if you can do a trial on it for 12 weeks, my thoughts were if all the GI is doing is trying drugs until they hit the right one, why not try one that has almost no side effects?? Let your Doctor know that you are willing to do blood work at the beginning and the end of the trial period and re evaluate it after that. My son's bloodwork was so much improved in 5 weeks of being on LDN that the GI had no problem writing a prescription for it after that.

I have read a number of times to get your yeast down before starting, even if you don't have a problem with yeast, set your LDN trial up for success, there are some really good natural products to control yeast, take one for a week and then start your ldn.

That's about all I can suggest. Good luck - keep us posted if you decide to try it.
 
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Naps22

Guest
http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=1769

I did a lot of searching on those forums and came across this thread. I emailed this lady and she emailed me back within 24 hours and gave me the names/locations/phone numbers of doctors that presribe LDN in Tallahassee and Tampa (current town and hometown respectively). I set up an appointment with the one in Tallahassee since that is where I'm living currently and I explained to him that I was a student at FSU and I wanted to try something else besides the Remicade and asked him if he prescribed LDN (even though I already knew he prescribed it), and he wrote me a script right away. That was my first appointment with him ever too. He explained to me that he only has like 3 patients on it and that 1 of the patients swears by it, and another one was on it for like a year but is currently flaring. They've been making me do all this other stuff like CT scans, bloodwork, Dr. Appointments every couple weeks to a month that I usually don't do but figured I probably don't have a choice if I want to stay on LDN. Plus they actually seem like good people so I may just end up making them my permanent doctor's office for now.

As far as me and the LDN goes, started it about a week ago. Like the 2nd or 3rd day on the LDN I realized I wasn't having anymore dirty underwear. I've had this problem every day for probably the last 10 years, so it going away is obviously a direct result of being on the LDN so first of all, DAMN for that. My BM's still aren't there, but it's not diahrea. I haven't been having any D, but the BM's still aren't formed at all. I'd say about a 5 right now. Maybe more time on the LDN will eventually correct this. Had a little trouble sleeping while on it, but I've always had trouble going to sleep for some reason I feel as if even if I wasn't on LDN I'd still be having trouble sleeping. I have had some pretty cool dreams, and a lucid dream last night, that was fun. I feel as though my appetite has gotten a little worse, but I haven't lost any weight, yet. Maybe it will get better as my body adapts to the LDN and maybe I'll even be able to put on some weight in the future, that would be nice. No stomach aches, been kind of moody lately but that's about it. I'll keep you guys updated in the coming weeks.
 
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Kev

Senior Member
Hey Naps22

I did a daily log of my foray into LDN way back when I started on it. It's all here on the forum someplace. I swear by it, but I can still have flare-ups from time to time IF something else is acting up... like a bad cold or the flu.
No matter what, the LDN always sees me back to right, at least so far anyway. I take my one little 4.5 mg pill at bedtime each nite and I'm fine.
 
Baltimore Doctors?

Hi All,
Thanks for the info. I did as suggested and submitted a request for Doc in the Baltimore area that work with LDN. So hopefully we get some hits. Our choices are so limited as it is, so having LDN in the toolbox can only help. Imuran has already been ruled out for me. Very bad side effects. Aweful stuff. Anyway, thanks again.
 
Doctor recommendations

Hi All,
I've been looking over the forum for a to ask for Doctor recommendations. Is there such a thread?
 
Son starting LDN tonight

Tonight my son will take his first dose of LDN... I'm so excited for him. This Wednesday I meet with a doctor in the same office that prescribed his LDN and hope to have my own Rx. I have to say, the posts in this thread have given me hope and encouragement!

Now if I could only figure out how to get an avatar working...
 
I agree about importance of a reputable pharmacy. I use Nate's Specialty in Staten Island and they also do a great job. I think that any PCCA pharmacy has high quality standards and not only listed on LDNINFO site.
 
Naltrexone - just starting out and need advice

Hi Everyone:

I am new to this forum and have been on naltrexone for 1 month. I would love to get some feedback from those of you on it regarding what I am experiencing. First, let me say that my disease seems to stubbornly present itself in my lower left side and rectum. I am taking Colozal and steroidal/mesalamine suppositories. It is an incredibly stubborn area to treat I have not been without symptoms for more than a few days for the last 4-5 years. I cannot seem to get into remission or even be symptom free for long periods of time.

So I started LDN one month ago and immediately saw that my stools were much firmer and I had less gas. It got to the point that I would actually get pretty constipated and I believe that was irritating the very area that I was trying to heal. So I am now symptomatic again. I have also had an incredibly stressful week, so this flare seems to be coinciding with that.

I would love some advice about what to do or any other thoughts. It seems that I may just be experiencing the yo-yo effect that some of you have mentioned. And I hope to get better soon. I am a little fearful that this treatment is not working for me. I really hope that is not the case.

Thank you in advance for any advice you might give. If anyone is willing to email me directly to discuss, that would be greatly appreciated: [email protected].

Chris
 
Welcome to the forum.

I am also taking LDN and have been on it for about 2 years. For the most part it works well, but it is not perfect. I use some other alternative treatments to help things along.

Six months is pretty much the time frame in which you should be somewhat stabilized. The effect is different than most drugs in that its effect is indirect.

The LDN does not really do anything for Crohn's directly but instead boosts or regulates the immune function. As the immune system starts kicking in there are various swings in effects in some people. This should lessen with time. Basically your immune system is working in a new manner so it is responding differently which can have various effects until things settle down.

If constipation is a problem I think I would supplement with magnesium in larger doses for a laxative effect. Magnesium Oxide is usually the form used for this. Epsom salt is Mag Oxide and is cheap to buy. The extra Mg will help the immune system also.

Hang in there a while and see how it pans out.

Good Luck

Dan
 
THanks, Dan. I appreciate the advice. I also use other therapies. I am having accupunture treatment right new. And I also take a ton of supplements: vitamin d (5000 iu/day), chelated multi minerals, vitamin k, digestive enzymes, probiotics and fish oil. Is there anything that you are doing that you would recommend?

Also, have you or anyone else experience appetite suppression? If so, will it last as long as I am on the naltrexone? I am actually concerned about it because I have lost alot of weight as a result of my previous flare and actually want to gain weight. So I am hoping that as my body adjusts, that will go away.

One final question, how are you doing now? Do you still have any bleeding or diarhhea? I am just trying to get a sense of what to possibly expect. I am hoping that my bleeding gets controlled by the LDN, as I am constantly fighting anemia and fatigue.

Again, thank you for your help!

Chris
 
I think you have the supplements pretty well covered Chris. I can tell by what you are taking that you have put some thought into this.

I take 500mg of Turmeric and Ginger, mainly for its antiinflammatory, antioxident effects and many other health benefits. The small amounts I am taking now probably do not have much effect on Crohn's, but I really do not need an effect at this time. In higher doses they can moderate a flare.

I also take a multivitamin, Magnesium, Vitamin D-3 in the Winter, also Krill Oil.

I have heard of some other people say the LDN seems to suppress their appetite, but I have never experienced that effect myself. I would think it would fade with time, but I really do not know.

I had some D recently, but since I am experimenting with killing viruses, it may be from that since I have no other flare symptoms. Actually that symptom is going away now. When I have killed intestinal bacteria in the past, I get a similar effect until the dead bacteria is purged out.

My wife had a similar reaction to the viral treatment so it is not just me.

I used to have occasional blood in my stool virtually all of my life prior to using LDN, but now I never have it. I actually ended my flare using an alternative treatment prior to using LDN, but LDN can do it on its own in most cases. If the LDN is working for you, I would fully expect the blood and D to end at some point.

If you are having trouble after a longer time, I have another method to speed things along if you are interested. It is not approved to treat anything and is also experimental, but it works well. I think you will straighten out after some time just on the LDN.

This Yahoo group can help find a doctor to prescribe LDN in your area Hezzie.
http://health.groups.yahoo.com/group/lowdosenaltrexone/

Dan
 
Once again, thanks Dan for the advice. I am sure LDN will work for me and I just have to be patient, which as you know is hard to do. I would love to hear about your alternative treatment, as I am always open to that.

Also, I have heard that some people end up with a build up of LDN in their system and it stops working--they say those people should actually take it every other day or skip it periodically. Just wondering if you have ever experienced anything like this.

Thanks!
Chris
 
I just found out about that myself, but as far as I know, I have not had a problem from a build up.

The problem sounds like it is possible so I am going to start skipping a few days. I will probably stop taking LDN on week ends and see how that works out.

Dan
 
Hey, just thought I'd throw in the experience I had when I skipped three days of LDN... I was in a severely depressed state (which is weird and way outta character for me)
 
I am fairly certain it does help with depression, but for me, I think it is because I am not inflamed. The endorphin boost probably also helps with depression for some.

I have missed a few days here and there without any consequences.

Dan
 
Well I'm not normally depressed without meds, so it was a pretty scary experience for me. I don't like the feeling that a med is controlling my personality/mood. Maybe it was due to the dramatic reduction in endorphins?
 
That is probably why that happened. It would swing the endorphins, and if you are sensitive to that, I can see where it could cause the depression effect when they drop suddenly.

I have never had any noticeable mental effects whether on it or off of it. Before taking LDN I had already eliminated my depression with large amount of Turmeric and Ginger.

Then I used Chlorine Dioxide to kill off acidic intestinal bacteria prior to taking LDN.

Once I reduced the dose of the Turmeric and Ginger, I never got my depression back, so I am assuming the LDN keeping my inflammation down has kept the depression from coming back.

I actually have a couple of good early warning indicators if things are not working as they should. Depression is one of them. I do not want it back. Thirty years is enough for me.

Dan
 
Herxing and LDN

Hi all:

So as I mentioned in my posts above, I have been on LDN for about 1 to 1.5 months now. I started at 1.5 mg and worked my way up to 4.5, which I just went up to last week. I am in a flare since last week--perhaps it was a mistake to go up to increase my dose while in a flare. Any thoughts?

My other question is based on Dan's response. Does anyone have any Herxing effects from taking LDN? I am trying to figure out of that is what is happening right now--that my flare is actually a die-off caused by the LDN.

If any of you have experienced that, can you share in details how it progressed? i.e. timing (how long it took for the herxing to end & when during your treatment it happened). Also, how long into your treatments before the bleeding and diahrea seemed to be controlled by the LDN? 2 mos? 6mos?

And finally, I don't think I have a problem with candida, but who knows. Is it ok to treat candida while on LDN?

Thank you!
Chris
 
I would say it is likely that you are experiencing a die off due to the LDN bumping up your immune response. People with Lyme Disease experience a more traditional "Herxheimer" reaction when using it, as their immune system is usually suppressed by the Lyme bacteria. Lyme bacteria produces toxins when killed and the Flu like symptoms are common.

If this inflammation is good or bad depends on if the long established bacteria causing symptoms is eliminated or not. With a weakened immune response, the inflammation is present but the bacteria is not eliminated. Then you have chronic destructive inflammation, instead of the normal healthy inflammation response that actually accomplishes something.

Immune suppressants address the chronic inflammation, but not the underlying bacterial cause. LDN addresses the bacteria causing symptoms, so it is expected that at some point the immune system is going to deal with the bacteria and this will cause the same symptoms as a flare. The difference is this response should stop at some point and bacteria should be killed in the process.

This is the yo-yo effect that often occurs with LDN. The body is operating with a different immune response, so things are happening that should have happened years ago. It may take a while to bring the body back in line, closer to normal.

How long it takes for your body to clear out this bad bacteria is going to depend on how much you have, how well your immune system is now working, and other factors that are individual to yourself.

Since I used Miracle Mineral Supplement (Chlorine Dioxide) prior to my LDN treatment, I had already chemically reduced these acidic bacteria. When I started LDN I did not have much bad bacteria for the LDN to take care of. This is why I never had any of the yo-yo effect that is common with LDN.

When taking the Miracle Mineral Supplement, I had bad D for several days as the dead bacteria was flushed out of the body. After that, it was done, and I could not induce any more D no matter how much I used. The acidic bacteria was gone and there was nothing more to flush out. So I pretty much went through the die off, but it was a chemically induced die off, instead of an immune system die off.

I actually have learned a lot about Crohn's from treating my wife's Lyme Disease. The two are not related, but killing pathogens is much the same.

Dan
 
Hi Dan (et al):

I am sure you understand what I am feeling--Is LDN working or not? Am I flaring or is it the LDN? Very nerve wracking trying to sort this all out.

I actually have the Miracle Mineral Solution, but have not used it yet. Do you think it would be a bad idea to take it orally now? Or maybe I should let the LDN do its thing. I am concerned it my upset my stomach which is already aggravated. If you have any advice on that front, please let me know.

Also, you mentioned you do not drink milk. Are you off dairy completely? Just wondering. I am guessing one of the bugs you mentioned trying to kill of with the MMS solution is mycobacterium (MAP). Just wondering if you cut out dairy completely so as not to get a reinfection.

Chris
 
I would just let the LDN work for a while and see what happens. You can always use MMS if you are not moving along after a few weeks. Do not take them close together, because it will oxidize the LDN rendering it useless.

MMS is hard on the stomach, but if you take it a couple of hours after eating, it is much easier to tolerate. You can always drink Orange Juice or something else with Vitamin C to deactivate it, if needed. I only took it in the morning, on an empty stomach once. It was a mistake, and I felt queasy for hours.

I do not like using it any more than I have to, but it works so well for me I will use it if I am even hinting at a flare.

If you do use it, drink a lot of water with it to bring it down into the intestinal tract. It will cause a reaction, and the more bacteria you have to kill, the more pronounced the reaction. I started with one drop and ramped up from there. I stopped at one point so I would not get dehydrated. It can be stopped at any time, and restarted later.

I never liked Milk much anyway, but used it on cereal which I do not eat any more.
I think cereal is one of the most unhealthy foods out there. Sugar and carbs, the worst of all worlds.

You are correct, in that I do not drink it because of the MAP bacteria, but processed Milk really does little for you anyway, and most of us do not tolerate it well.

I would not worry too much about the flare. It could just as likely be part of the LDN working as not. Time will tell the story.

Dan
 
Dan:

I am sure you are right. I definitely think I am herxing. I just feel weird and almost flu-like but without the flu. Anyhow, I do not plan to stop the LDN as I have faith that it will work--and it already seems to be doing that albeit in an unpleasant manner. Though I have to get over this unpleasant hurdle to get to feeling better.

Thanks again for your advice and support. I will check in once in a while to let you know how things go.

Chris
 
I have been on LDN for 11 days (no + chanes yet) but GI had me start Prednisone again yesterday 40mg as things are horrible right now. He says to keep taking LDN I feel that they will counteract as one supresses immune other boosts . . . . So I did not take LDN last night.

any ideas?
Thanks
 
I would be inclined to believe that they would work against each other also.

It may be better to wait until you are stabilized to take LDN, but I am not a doctor and maybe he has some experience, using both, that I do not have.

I guess it is your call, but I would expect some kind of reasonable explanation as to why you should take both at the same time, from the doctor.

Dan
 

Kev

Senior Member
Couple of quick points (based solely on my personal experience..not to be confused with expertise... I don't think there are any experts in the field of LDN in relation to crohns..yet.) First off, I didn't ramp up on the LDN.. I started off at the full 4.5 mg dosage... yet I got worse before I slowly got better. Not sure if that is typical, or if ramping up might make that process even slower, but my logic back then was... well, since 4.5 mg of naltrexone is pretty safe anyway, why do the ramp up... But, bear in mind that I'm 6' 3" and 245 lbs... so a person of normal size MIGHT want to take it slow.... but (and I'm strictly guessing here... the ramp up may slow you down... I wouldn't start marking the days off the calendar on this treatment till you are at the full 4.5 mg dose, OK?)

Second item... colds, flu, other serious ailments, AND (again another pure guess) "STRESS" may likely cause you to flare. WHY? I dunno.. and I really dont' think the "experts" (on crohns) know either. time and again, personal story after personal story on here of how/when people 1st became ill with this disease a major stress event had preceeded... either illness, emotiona turmoil, whatever. I know "they've" done study after study looking for a cause/effect link to crohns AND haven't found one, but I think that's because they haven't looked in the right area yet. I think most members will agree stress plays pure havoc with their crohns AND many can recall stressors in their lives just before crohns came along. Maybe not every case, but enough to cause us crohnies to believe in it like a 4 year old believes in Santa.

Anyway, my long winded point is... if you don't see significant improvement in your situation within 3 months of starting on 4.5 mg of naltrexone, it probably isn't going to work. I'm not suggesting you give up... the naltrexone forum has tips on making it work... including how to test for candida, and adding a diet like the SCD to your regimen. The potential benefits of getting LDN to fight your crohns for you are good enough to make it worth fighting for, at least thats the way I looked at it. When it is good, it is very, very good, but it is NOT bulletproof. I still have the occasional flare... but I stick to LDN and it always has turned things around for me. Pre LDN, when I started to flare, I always had to increase my meds, or switch meds, and I was always going downhill.
You know what I mean? Seems every time I flared I ended up seeing my GI who had to put me on something stronger, etc., etc., just to get back to where I was before I flared. LDN has stopped that viscious cycle for me permanently.
 
Thanks guys,
I think I will try to get things stable before I start LDN again. they are talking surgery and GI said if things did not improve to come into emerg to get admitted. Im a little scared as I dont like the hospital (have to share a toilet and who knows what they want to do to you) I like the comforts of home even if I feel like I am dying. THe cramps and pain have been WORSE the last 2 days since started the prednisone . . .would it make them worse? and the vomiting high doses Prednisone always make me throw up. I guess if nothing else a bag of saline might help.
anyway thanks for the advice. It is nice to know someone out there understands.
Heidi
 
Hi LoveToTravel:

I wonder if Colostrum would be beneficial for you? I took that for over a month before starting the LDN. I think it helped prepare me for it. That would be my suggestion. Good luck!!

Chris
 
Hello,

It's been a while so just wanted to give an update. On LDN now for 7 months and things are good! Still no sign of any flare and prednisone free since June. Went for a colonoscopy which showed some inflamation but nothing worse than my last scope. Still following SDC diet. Taking supplements but no other meds.

My GI doesn't seem to want to admit it but the LDN is doing something. I'm not sure if I can say I'm in remission but it certainly feels like the crohn's is not progressing and the diet is actually allowing my large bowel to heal slowly. I haven't seen mucus for months and the blood sometimes comes and goes but in very small amounts...hemoglobin is up too.

My family couldn't be happier! I wish this would work for every person with bowel disease....the only thing I can suggest is to do SCD diet in conjunction with LDN and stick with it....really with it....make a commitment for at least 4 months to see how it works for you. Once you see improvement it'll be easy to decide to continue.

Lovetotravel, sounds like you are at a critical stage with your crohn's. If I were you I'd stay on prednisone until you are stable and start SCD diet ASAP! Slowly taper off prednisone by 1mg per week....once you are below 10mg start LDN.

Cheers,
RobK
 
Congrats RobK! So good to hear LDN is working so well for you. I've been on it for a year now and things are great! No pred since January, almost a year. I'm just on LDN and some supplements. No blood, no mucous, normally two regular bm's most mornings, life is good! :)

Miss
 
Great news from both Miss and Rob!

Rob, if I remember correctly, you had some yo-yo effect early on, didn't you?

Is that gone for the most part now?

I am trying to get some kind of vague time frame that this occurs in, for future users.

Thank you.

Dan
 
Dan,

I wouldn't say yo-yo effect early on...I had my doubts about it's effect but found that changes came very slow and suttle from week to week. I did have the "leg pain" side effect for 1 day and nothing since. I'm actually sleeping better and the biggest test of all which I've have past time and time again is stress. I'm in sales and normally when things got really busy at work a flare would kick in.

Miss, I'm curious about your diet and what you eat? I've been on SCD for a year and I'm thinking of slowly introducing some carbs into my diet.

RobK
 
Hi RobK,

I tried sticking to SCD before starting LDN when I was on remicade. It was so strict and I was still on a lot of prednisone at the time so I found it very hard to stick with. I still have a lot of predweight to get rid of but that will come off at some point. Anyway, I just eat whatever. I kept track of everything I ate for months and found it really didn't make a difference. My problem seemed to be mostly hormonal with my cycle.

Miss
 
Lovetotravel, I too got worse on LDN when I first started it. At week 6 and 7 after starting I was much worse. At week 8 it was like a switch was thrown and I was much improved. I have been doing very good ever since (started the LDN in June). I was on 10mg of prednisone when I started. Doctor has been tapering me off since and I now am on 2.5mg. Don't give up it may take time to start working. Hope you are feeling better.

Robert
 
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