Ldn

[djenne]

I just started taking ldn 3 weeks ago and am going through a bad flare. Things were ok when i started. Does anyone know how long it takes for this to work? Is this flare just by chance or could the ldn be causing it? Dean

 

[ctrl z]

There are many people starting LDN that report a herxheimer reaction. It is the body kicking up pathogens and what people say is "getting worse before getting better".

I would say that if this has started since taking your LDN that it is a sign that the LDN is, in fact, working. Stick with it. It will stop eventually. Just do what you can to make yourself comfortable.

 

[djenne]

Thank you for your reply. how long would it take for symptoms to go away? I had to start taking 30mg predisone it got so bad. I am now feeling better.

 

[ctrl z]

I don't know... and I'm uncertain if 30mg of prednisone will interact with the LDN and render it useless. I did not have a bad reaction whenstarting LDN but that could have been because I have a history of consuming a high amount of probiotics and healthy diet. Hopefully someone else will chime in and be able to give you a better answer :smile:

 

[Kev]

My vague recollection was that 10mg or less of pred could be taken with LDN. I wish I could be more exact. If that is indeed the case, then I would suspect that currently the 30mg of pred you are taking is making you feel better, but may be delaying LDN doing its thing. I can't offer you guarrantees that LDN will work for you, but I do know that sooner or later you will have to come off the pred. Been there, done that...(spent nearly a year ramping up then tapering off... wasn't fun.) When I started LDN 5 years ago, I went thru a very rough time at first. I can't say for certain that everyone will feel much worse before they feel better... my early rough times could have had more to do with pred withdrawal... than delayed start of the LDN. But, I think that the 'experts' expect to see improvement (if LDN works for you) within 8 weeks. I have always advised people to give it 12 weeks. (simply from the length of the trials). That can be a long, LONG time... if your symptoms are getting worse and worse because the LDN hasn't started to do its thing yet... and like I said.. no guarrantee it will kick in.. tho it seems to work for the majority... I know... I went thru it.. a very scary time. But when LDN does kick in, you are literally laughing. That is not a figure of speech. LDN can N does stop Crohns in its tracks. It won't undo the damage the disease has done up to the point, but it will stop it, and you should experience mucusol healing.. and no side effects per se. I mean, nothing comparable to the scope of side effects that the other meds come with. Vivid dreams (like a veritable vacation while you sleep) ..but also possibly sleep disruptions... or the feeling of being 'wired'. I only had the dreams, nothing else. EVER!. And I've been playing the role of living lab rat on this stuff since November 07.

 

[djenne]

Thanks for the response Kev. I have had crohns for 40 years, i am now 50yo. I had a lot of hope for ldn and still do but there was only so much i could take. I am going to taper quickly (i have been on and off pred for decades) and continue with it. If that renders the ldn noneffective than so be it. Did you have the cramping, nausea ext when you started? How long did it take to feel better and what did you use in the mean time to make yourself feel better?

 

[Kev]

I kept a daily diary. It is here on the forum. I didn't take anything, I just tuffed it out. That wasn't all that difficult. The only thing that had ever worked was pred... but my docs kept telling me I couldn't stay on it... so I would ramp up... taper off, keeping my fingers crossed.. go thru the withdrawal.. nasty!.. then the Crohns would come rushing back. Then I'd go back on pred... only this time I had to ramp up to a higher dose just to get back to square one... then taper off, and the whole scenario would just repeat over and over. While on pred, I felt fantastic... then suffer thru the withdrawal, then suffer with the Crohns, then take even more pred the next time. So, it may sound like I grinned and bore the very hard initial stage of trying the LDN, but.. I was used to feeling like... well, crap anyway. So it was really no big deal... simply because I was totally out of options. And, I was fighting mad at this disease.... and when I get in that state; wellllll .. I've got two sons... My youngest is like a clone of me. Whenever his older, bigger brother picked on him a little too much, the fighting side he inherited from me would come out. And my oldest son learned the hard way that being bigger, older, stronger has its advantages.... but if you unleash a tiger, you are going to get mauled.

I don't know if that is of any help. I 'believe' that you can continue on 10mg of pred and it wont' affect LDN. Don't hold me to that... I think it is referenced on here more than a few times. Maybe, if the 10mg thing is true; and you can ignite your will to fight against all odds... I won't even finish that thought... as I wrote it it just sounded trite.

 

[Jmrogers4]

My son had a pretty bad flare about 2-3 weeks into his start of LDN, we did not put him back on prednisone mostly because he was dead set against it (hates the stuff). We did go to mostly EN diet with some mild protein chicken, eggs. It seemed to help. We are currently in our 5 month and he is feeling great and acting like every other 13 year old boy out there (ARGHHH) but I will take it compared to what we had to deal with.
Like Kev says I think it gets worse before it gets better and I have also heard the 10mg of pred are okay.

 

[djenne]

Now i feel like a wimp! I stopped the ldn because i was going to have to stop work. It is was about the third time in my life were loading up on anti diarrhea meds still didnt work! The nausea and fever came up and i have not had those symptoms in a long time. Maybe at some point if i start again the dose will be much lower(i,m on 4.5 right now). How much is every one on here?

 

[Jmrogers4]

Jack takes 4.5Mg every night. We did start it on his summer beak figuring he would miss some school otherwise and he would have definitely been home a week or two if it had been during the school year. he had a week of imodium and fever nausea enough to the point I was oh no this isn't going to work and I thought I will give it a few more days then I'm calling the GI luckily that wasright about the point he rounded the bend and started feeling great. Normal BMs since then

 

[Kev]

Don't change the dosage when you do go back on it. For whatever reason (and I have no info, so I can't offer an opinion) 4.5mg seems the magic dosage for triggering a 'rebound' effect which slowly halts Crohns. I have heard (mostly on here) anecdotal info of people who have tried lower/higher dosages... tho I've never seen any clinical or medical evidence to support those altered doses. I've heard many reasons people give for going a different route... Hey, if you are going to just randomnly experiment, God speed N Bless. But, if those experiments FAIL, don't blame it on the LDN. That personally 'grinds my gears'. Why? Simply because 3 studies by Dr Jill Smith have repeatedly shown that Crohns CAN be treated successfully in a majority of patients IF they follow her protocol. Unfortunately, this medical breakthrough has deliberately been kept one of the best kept medical secrets of all time. If one contemplates the sheer number of people this method COULD have helped, or be helping, IF only it was treated with the respect it deserves.... I mean... really... people SHOULD be up in arms about this. If you (or anyone else) has suffered needlessly because a) you didn't know/weren't told about it OR b) you found out... but couldn't find a doctor with the stones to prescribe it.. Anyway, when people NEEDLESSLY mess with the 'working' formula then proclaim LDN doesn't/didn't work... well, I get peeved. 11% or so of patients won't obtain aid from LDN... those are legitimate failures, and are worthy of mention and discussion. But those who play fast and loose with this treatment based on so N so's anecdotal info... welllllll... LDN isn't voodoo, it isn't witchcraft, it isn't snake oil. It is a valid, safe way to treat Crohns. Hmmmm, went off on a tangent. Time to slink down off the soapbox. Sorry..

 

[Clash]

Kev, it seems, and I think David commented on this, one of Jill Smith's studies, I think the pediatric study the dose was not 4.5mg but .1mg per kg of weight which would've put my son at 5.1mg if I did the conversion right and all.

 

[Jdam173]

Im going to my doctor on monday because i have another perianal abscess it seems. And i came across this LDN, anyone have any info as far as taking it with an abscess?

 

[Jmrogers4]

I could be wrong but I believe Kev had abscesses he should be along shortly. No abscesses with my soon that we were aware of. I can tell you it does take a while to kick in but Jack is feeling better than he had any
time since his diagnosis

 

[Kev]

I did have a fistula, but it has disappeared/healed long ago. I had a fissure very early on, long, long before dx'd... Crohns wasn't on the radar, wasn't even part of my vocabulary.

The dosage I mentioned (OK, preached about) was intended for adult (or adult sized) patients only. The pediatric study (I haven't read it) apparently talks about a sized based dosage for children... I don't recall the exact numbers... I believe that the member who posted the info... if I did the math right... the dosage in that case was probably somewhere between 3.7 to 4.1 mg.. so it would appear that the only way to get dosages 'tailored' to a child would be to go with a liquid form of LDN. All guesswork on my part. So, in summation... fistula yes, fissure yes, abscess no, and clarification on the dosage thing... or at least as clear as my fuzzy memory AND anecdotal info can be.