Scared! Of ldn..

[A Walk in The Dark]

can or has anyone tried this ..I have a bottle in my cabinet and I am afraid to use it..I have been near death a few times a tow of them were due to the meds Humira being one of them so I have tried everything..I had a recent colonoscpy and the dr said he didnt wnat to take on such a bad case and so its up tp Stanford at first my surgeon said 20c should come out and then he back tracked I have beed in bed in pain and waitng like a ticking bomb :dance: ika:

I have included my last blog entry for you guys too ….it was like coming out of the closet about my crohns so enjoy…"Tekettle Junction and "The Soldiers of Dust" @ www.awalkinthedarkbylianelangford.blogspot.com

Im not really in a dancing mood but I liked the banana!

 

[Clash]

What part of ldn scares you? I think the main reported side effects have been vivid dreams or sleep disturbance and that only seems to last a few weeks or something. We have threads here on the forum about ldn that you may want to check out, they are under the subforum titled treatments.
Several members here are on LDN, I think one of the reasons they opt for it is because of its lack of cary side effects. Kev, a member who has been on ldn for 5 or so years might can give you some better insight. I hope this treatment works for you and you are feeling better real soon!

 

[A Walk in The Dark]

What part of ldn scares you? I think the main reported side effects have been vivid dreams or sleep disturbance and that only seems to last a few weeks or something. We have threads here on the forum about ldn that you may want to check out, they are under the subforum titled treatments.
Several members here are on LDN, I think one of the reasons they opt for it is because of its lack of cary side effects. Kev, a member who has been on ldn for 5 or so years might can give you some better insight. I hope this treatment works for you and you are feeling better real soon!

Thanks Clash actually I took a few days to study all the research and was thrilled! and even called the nurse for the doctor who initiated the study and She was leaving the University this is as of 2 months ago. But I did ask her about the study group and she said they were not doing it any more. What scares me is this…I have had every and I mean every med they give for C even Chemo.and I have had bbad reactions anything from CHF to massive infection (almost lost colon) from that med and disintegrating intestines with a 50/50 chance. and to top it off I took Leviquin and yes you guessed it, I had a spontaneous rip and ended up having my Achilles replaced soooo very allergic! I have the med all ready to go but I want to give it a full body search!!!

 

[Clash]

Oh my you have been through so much! I really don't know much about LDN, just what members here have posted and of course the studies done at Penn St. I'm sure someone will be by shortly that can better answers the questions you have. I do really hope you are able to find a treatment that will work for you without causing all the issues you have had to deal with.

 

[A Walk in The Dark]

Oh my you have been through so much! I really don't know much about LDN, just what members here have posted and of course the studies done at Penn St. I'm sure someone will be by shortly that can better answers the questions you have. I do really hope you are able to find a treatment that will work for you without causing all the issues you have had to deal with.

ahahahahaha! step away from Liane…... thats right real slow and easy LOL! thanks Clash xoxoxox

 

[Clash]

My niece has severe refractory cd and has lost most of her colon and almost died due to sepsis twice. She is steroid dependent and has not found a med yet to work for her. She now has an ileostomy from recent surgery and the cd is still active. I have mentioned ldn to her but I am just not knowledgeable enough about it to give her enough credible info about it. I did tell her about this forum though because there seem to be so many knowledgeable members that would be able to better help,I hope the same for you. My son, 15, was just recently diagnosed and we started with remicade right away so I just don't have theexperience others here have. LOL

 

[Thermo]

I like your sense of humor and positive outlook, you are a great writer as well! Are you waiting for surgery at Stanford? who is your GI doctor?

 

[Kev]

I think perhaps your opening line has been mis-interpreted. (Or maybe just my take on it is wrong). My take is that you are scared, and are wondering about starting LDN. I think I can help in at least one regard. When surgeons start talking about how much should come out, they talk so casually... like it is no big deal. That's because they're doing the cutting, and someone isn't thinking about cutting out bits of them. I had 1 1/2 feet removed the last surgery... it was supposed to cure me. It didn't. But it really was not a horrible, even fearful thing. It actually gave me a break of several weeks while I was healing where I had no disease symptoms at all.. just the healing process. Unfortunately, the disease came back, worse than ever. Fast forward (in retrospect) to November of 2007. That's when I started on LDN. It wasn't an overnight success. I had to tuff out the early weeks, I got worse, was terrified it wasn't going to work, before I got better. And better. And better. Next November, less than 3 months away, I will be CELEBRATING 5 years on LDN, and there have been no ER trips, no surgeries, or anything along those lines since. I live, I work, and I play, all thanks to a little pill that I take each night at bedtime. That's what it did for me. Now, in your case, considering how bad your condition is currently, you might want to consider minimizing your risk by taking LDN in conjunction with some other drug. (if you are considering LDN). I 'believe' it can be taken with other drugs... Just because I went at it cold turkey doesn't mean everyone else has to as well. I 'think' pred is a drug that can be combined with LDN to start. Let the 'pred' get you over the first bumps, and let LDN carry you the rest of the way as you taper off the pred. (I'm no expert, no medical training, but I've heard that the 'experts' say there is no reason not to use certain other drugs... who these experts are and exactly what other drugs you can take with LDN escapes me? I'm afraid you will have to do your own research in that department. I do know LDN worked/works for me, and I believe the stats say it works in about 89% of the people who take it for Crohns.

 

[momofzach]

I am seeing a doctor who will give me ldn this Wed., and I am so excited about it. Thanks Kev, for all of your knowledge and advice. Before joining this forum, I didn't even know about ldn. My GI refused to give it to me, he seemed pretty clueless. So I am driving over an hour away to a doctor I found on the ldn website. I will definitely post my results, it seems to be a very promising drug for Crohn's.

 

[Clash]

Kev how often do you have a colonoscopy? I know you mentioned having to stay on top of a couple of things that were caused by taking meds in the past and I guess just assumed that a colonoscopy was one of the tools used to stay on top of it. Without any risks due to past meds what tests would you recommend while on ldn and how often would you recommend they be performed?

 

[A Walk in The Dark]

I like your sense of humor and positive outlook, you are a great writer as well! Are you waiting for surgery at Stanford? who is your GI doctor?

thank you for the wonderful energy and encouragement!

 

[A Walk in The Dark]

I think perhaps your opening line has been mis-interpreted. (Or maybe just my take on it is wrong). My take is that you are scared, and are wondering about starting LDN. I think I can help in at least one regard. When surgeons start talking about how much should come out, they talk so casually... like it is no big deal. That's because they're doing the cutting, and someone isn't thinking about cutting out bits of them. I had 1 1/2 feet removed the last surgery... it was supposed to cure me. It didn't. But it really was not a horrible, even fearful thing. It actually gave me a break of several weeks while I was healing where I had no disease symptoms at all.. just the healing process. Unfortunately, the disease came back, worse than ever. Fast forward (in retrospect) to November of 2007. That's when I started on LDN. It wasn't an overnight success. I had to tuff out the early weeks, I got worse, was terrified it wasn't going to work, before I got better. And better. And better. Next November, less than 3 months away, I will be CELEBRATING 5 years on LDN, and there have been no ER trips, no surgeries, or anything along those lines since. I live, I work, and I play, all thanks to a little pill that I take each night at bedtime. That's what it did for me. Now, in your case, considering how bad your condition is currently, you might want to consider minimizing your risk by taking LDN in conjunction with some other drug. (if you are considering LDN). I 'believe' it can be taken with other drugs... Just because I went at it cold turkey doesn't mean everyone else has to as well. I 'think' pred is a drug that can be combined with LDN to start. Let the 'pred' get you over the first bumps, and let LDN carry you the rest of the way as you taper off the pred. (I'm no expert, no medical training, but I've heard that the 'experts' say there is no reason not to use certain other drugs... who these experts are and exactly what other drugs you can take with LDN escapes me? I'm afraid you will have to do your own research in that department. I do know LDN worked/works for me, and I believe the stats say it works in about 89% of the people who take it for Crohns.

Kev thank you for your imput…I did do a ton a research even calling the U where the studies took place and actually they would like the patient to be off of other meds it s simple logic that if you are other meds then how do you know which is working or causing the problem perhaps in conjunction with one another as well. I do have the med ready to take but I am waiting to see if surgery is needed I have had 4 near deaths and I LOL! need to think about it …I am on 7 mg of pred. now and I am very savvy about my drs as well I figure if they have seen my ass we are on a first name basis LOL!….I am well aware of how much they will need to take .My issue is that they want to wait to do the surgery when I am in another emergency situation and the last one..a nurse actually giggled me to see if I was alive!!! NOT! again! I am glad to hear you are doing well and I would love that for yself as well I am just not sure I can handle all of the ( just get through all the effects first) I am pretty sick now...

 

[A Walk in The Dark]

Kev how often do you have a colonoscopy? I know you mentioned having to stay on top of a couple of things that were caused by taking meds in the past and I guess just assumed that a colonoscopy was one of the tools used to stay on top of it. Without any risks due to past meds what tests would you recomend while on ldn and how often would you recommend that be performed?

yes and about 10 CTs ahhhhhhh! but what they found in July was advanced with too many to count ulcers…the last time my intestines infiltrated my system there was just one..soo I am wondering what to do I wanted to have this removed via lap-scope and electively without the near death thing!
you know my GP recommend LDN the other docs just poof it away! so satnford it is I will see what they say about LDN versus this surgery.

 

[A Walk in The Dark]

I like your sense of humor and positive outlook, you are a great writer as well! Are you waiting for surgery at Stanford? who is your GI doctor?

6mp gave me the rash and both the Biologics almost killed me so they are out

 

[Clash]

Awalkinthedark, sorry you have been through so much, when are you scheduled to go to Stanford? Did you have an anaphylactic allergic response to the biologics? In my previous post I was actually asking Kev what his testing regimen has been since starting LDN. I hope you get the answers you are looking for.

 

[A Walk in The Dark]

no with 6mp I was on it the 3 months and then developed an alrgeic reaction and they took me off, then Remicade created infection in my heart and CHF I still have a leaky valve so can't take large dose of predn. lest to much fluid builds up in my chest, the humira created mass infection within one mont after the shots started, 3 golf ball size abbess on outside of colon and over a month of iv antibiotics that created less than .2 in potassium and 106 fever this near death unconscious for about 72 hours wild stuff…I have no gallbladder now and my eyes went blind from the Crohns so replaced lenses I have seen many things like all of us…so you can see my fear of oh whats this another drug! ahhh I do believe I have had enough bravery for one life time and have been a team player…cause lets face it you have to…I keep going and I was very excited about this new thing BUT!:voodoo:

 

[Clash]

Yeah I can completely understand your trepidation about any suggested med. It sounds like you have done your research with ldn and maybe Stanford can give you enough information to support the treatment they recommend. What is reasoning the doctors are giving you for waiting til it becomes an emergency surgery?

 

[A Walk in The Dark]

well after my surgeon said it had to coem out he back tracked I think its the insurance and he says its because my crohns keeps coming back and he doesn't want to talk more intestine but in the end thats exactly what they will have to do anyway! I wanted to get it done before it becomes an emergancy like the last time :rosette1: and they have to take more than now...

 

[Kev]

Couple of quick things. Yeah, it makes perfect sense from a researchers perspective to have a patient in a trial taking nothing... except the trial med or a placebo. They don't care if it is tough on the patient, they just want to be able to attribute the results to just one drug. But you aren't participating in a drug trial, you just want your crohns to ease off. Personally, if it were me.. (and this is just me talking, no expert, no medico, nothing along those lines) AND I had me a supply of fresh LDN and was taking pred... well, I would be into the LDN pronto. The way I look at it... since I'm leaning towards LDN anyway, and probably starting to taper pred soon... then I'd start the LDN in hopes that as the pred diminished the LDN would have kicked in and started doing its thing. When the pred was completely out of the equation, whatever happened then would say whether the LDN was working or not. And, if it is working, that may mean no surgery is required. It (LDN) can stop active disease... but it can't make scar tissue just go away. The sooner it stops the disease, then the less scar tissue issues you have to deal with.

OK, now part II. I have bloodwork done every 6 months, and I have a scope down at the same rate. The scopes used to be less frequent, but they discovered pre-cancerous growths (they were keeping an eye out for issues after I went toxic on a previous med).
I posted some pix on this website from one of my scopes. It was done for two reasons. One, it shows clearly a lot of pink, healthy tissue, courtesy of LDN. Second, it shows the amount of scar tissue the disease left me with (not for the squemish). There is too much for corrective surgery. That is one of the motives behind me mentioning LDN when opportunity presents. Get on it (or whatever works for you) and you lessen the need for surgery AND minimize the potential for scar tissue to develop in your tract. As far as I'm aware, there is no process to restore tract that has been surgically removed OR meds that will make scar tissue go away. If I'm wrong in either belief, please let me know.

 

[A Walk in The Dark]

all good points Kev! I think all this time I have been a a little hell raiser the doctors actually said I should be dead!!! can you believe that? i think you make a good point about the scar tissue..on that subject I just what to shout out about these re-sects. for the over weight? one being my sister who chose to create a quasi crohns disease and had her stomach stapled! but because it was unsightly the insurance kicked in a tummy tuck, face-lift and new butt…Helllloo IM vain too and nobody said hey Liane would you like us to fix that permanent funny lump from your last surg? hmmm or hey you have been in bed for months from this so we will throw in Madonnas ass too….HELLLOOO!

I do feel a bit better ow thanks Kev.

 

[Glenda]

I think perhaps your opening line has been mis-interpreted. (Or maybe just my take on it is wrong). My take is that you are scared, and are wondering about starting LDN. I think I can help in at least one regard. When surgeons start talking about how much should come out, they talk so casually... like it is no big deal. That's because they're doing the cutting, and someone isn't thinking about cutting out bits of them. I had 1 1/2 feet removed the last surgery... it was supposed to cure me. It didn't. But it really was not a horrible, even fearful thing. It actually gave me a break of several weeks while I was healing where I had no disease symptoms at all.. just the healing process. Unfortunately, the disease came back, worse than ever. Fast forward (in retrospect) to November of 2007. That's when I started on LDN. It wasn't an overnight success. I had to tuff out the early weeks, I got worse, was terrified it wasn't going to work, before I got better. And better. And better. Next November, less than 3 months away, I will be CELEBRATING 5 years on LDN, and there have been no ER trips, no surgeries, or anything along those lines since. I live, I work, and I play, all thanks to a little pill that I take each night at bedtime. That's what it did for me. Now, in your case, considering how bad your condition is currently, you might want to consider minimizing your risk by taking LDN in conjunction with some other drug. (if you are considering LDN). I 'believe' it can be taken with other drugs... Just because I went at it cold turkey doesn't mean everyone else has to as well. I 'think' pred is a drug that can be combined with LDN to start. Let the 'pred' get you over the first bumps, and let LDN carry you the rest of the way as you taper off the pred. (I'm no expert, no medical training, but I've heard that the 'experts' say there is no reason not to use certain other drugs... who these experts are and exactly what other drugs you can take with LDN escapes me? I'm afraid you will have to do your own research in that department. I do know LDN worked/works for me, and I believe the stats say it works in about 89% of the people who take it for Crohns.

I have been reading your posts with great interest. My son just tried his first dose of 4.5 mg taken at night. He woke up at about 3 in the morning with bad abdominal pains. I thought it was a coincidence. Almost a week later he tried again but the result was the same. When you said that it made your symptoms worse in the beginning, I was wondering how it made it worse. No where else have I heard anyone talk about this. He is now going to try to take 1.5 mg for 2 weeks then bump it up to 3mg for the next 2 weeks followed by the 4.5 dose.
My husband is about to start for his autoimmune disorder, Myosenthus Gravis. I am wondering if he should also start at this tapered dosing.

 

[A Walk in The Dark]

I have been reading your posts with great interest. My son just tried his first dose of 4.5 mg taken at night. He woke up at about 3 in the morning with bad abdominal pains. I thought it was a coincidence. Almost a week later he tried again but the result was the same. When you said that it made your symptoms worse in the beginning, I was wondering how it made it worse. No where else have I heard anyone talk about this. He is now going to try to take 1.5 mg for 2 weeks then bump it up to 3mg for the next 2 weeks followed by the 4.5 dose.
My husband is about to start for his autoimmune disorder, Myosenthus Gravis. I am wondering if he should also start at this tapered dosing.

Glenda…that is a considered a high dose to start but there is a measurement that can be taken to se what the staring dose should be? but if I were your son I wold start at 1.5 mg. and work up to 3 mg. as 4.5 is the highest I have heard so far in the studies at penn state. I am going up to Stanford on the 17th and will have more news then…but in all the research I have done it is true that it can be a rough ride at first and I am really not sure of the long term ramifications …as for myself I have taken everything and I would be lying if i said yippy!! I am taking these right now!! and they have been in my cabinet for months now so I want to trust but its hard to. Kev has had great success but I wonder about a few things that need to be questioned….

 

[Glenda]

I wish you luck and will be waiting to see how you fare. I was wondering what Kevin meant by having a bad time in the beginning. He is the only one who said there were negative side effects at the beginning even the Penn State didn't mention starting at a lower dose , unless I missed it

 

[KWalker]

Kev, when you said things got worse at the beginning of taking LDN do you think the medicine made you feel worse or for a different reason?

 

[Glenda]

I am new to this and don't know how to post a message to a specific member. Thanks for doing that

 

[KWalker]

Glenda, as you will see on the top right of your homepage. You can type any member's name in a post with a question or reference and the crohnsforum will send that member a notification letting them know.

 

[A Walk in The Dark]

Glenda... actually they did do a study and there were patients that did get worse , prob. because of the immune uptake..when I fond out about this new med I was over the moon then I did many days of study and like I said even called and talked to the nurse for those studies…unfortunately they are not doing any further research…i wiil let you know what Stanford has to say..hmmmm I know i am tired of being a test rat! but I am also very tired of being sick too

 

[Glenda]

I too am doing lots of research and feel that there is protocol to follow that will be successful. I believe that diet plays a big part. Google Crohnsboy and Dr Dahlman from Ohio these are a couple of sites that have a common thread for success. I wish you lots of luck and hope you will find some relief

 

[A Walk in The Dark]

I too am doing lots of research and feel that there is protocol to follow that will be successful. I believe that diet plays a big part. Google Crohnsboy and Dr Dahlman from Ohio these are a couple of sites that have a common thread for success. I wish you lots of luck and hope you will find some relief

thanks Glenda I will check it out…I have tried just about everything I am now Juicing and of course always large amounts of probiotics...

 

[KWalker]

I really want to try LDN

 

[Glenda]

I forgot to mention to google Dr. Terry Wahls. She is a Dr who has MS and although she followed the traditional medical treatment, she was getting worse. She developed a diet among other things, one of which was getting tested for food allergies (same testing as Dr. dahlman). It is truly inspirational for EVERYONE Then just google I BEAT CROHNS to listen to the testimony of many other people saying basically the same thing.

 

[Kev]

KWalker..

Just saw the question. Don't know why it didn't crop up earlier, but better late than never.

Here is what I think.. (feel, guess, opine, whatever)... Before starting LDN, I was back on pred just to try to stabilize me... I was going downhill VERY fast, and not having any success with the other meds. Knew I couldn't stay on pred forever (was on it almost 12 months). So, prior to trying the LDN, I weaned off pred, was primed for all of those ever so lovely pred withdrawal symptoms/syndromes... and then started on LDN. Now, here we go... pred withdrawal underway, LDN just starting, and nowhere near the stage where the LDN would even start to kick in... and I'm not taking any traditional meds to even try to suppress my disease. I have always envisaged Crohns as an opportunistic little s.o.b. ... and with nothing to hold it in check, combined with pred withdrawal, my first few weeks waiting for my LDN to turn things around; well, Crohns gave me an old fashioned s...t kicking. I've heard that LDN can be combo'ed with some other IBD drugs (like, I believe it can be used with less than 10mg of pred... not sure of that, so please do your research)... to minimize any issues that can crop up while waiting for LDN to kick in. But, I've no 1st hand experience or knowledge in that regard. All I can say is that I was able to do the 4.5mg start up cold turkey (as it was), and not only survived but thrived. And continue to thrive. And, hey, if I can do it, then absolutely anyone can.

 

[Glenda]

Thank you so much for replying. My son is still on Entocort. Because he is managing "okay" this way for right now we thought we would start the LDN. He is attending his last year of University in the states and is playing a high level sport. He played through last year, not feeling great and hadn't been diagnosed until this summer. Do you think the majority of your backslide was because of no medication for the Crohns, or do you think it was partly due to the LDN. We will start with 1.5 then 3 mg then up to 4.5. The pharmacist suggest a gradual dosing. I did not ask him about taking Entocort at the same time. How long did your set back last before you started feeling better. Do you follow any special diet while on LDN?

 

[Kev]

Thought I'd answered that. My belief is that I experienced a combo of increasing Crohns, pred withdrawal, and nothing actively engaging my disease until the LDN started to kick in.
I honestly don't believe any of my issues after I started LDN were due to the LDN at all, else they should have continued... since I've continued the same dose of LDN every day since. Thats the logic behind my belief.

And, I try to follow (although with the passage of time and the continued success of the LDN I'm no longer 'ultra-religious' about it) a sensible diet for someone with Crohns.
Low fat, low fibre, low residue, hi protein, lactose free, avoiding gassy or trigger foods.
I mean, hey, my GI tract was severely damaged by this disease, I've got tons of scar tissue, so I try to eat sensibly and avoid things that will stress what tract I've got left.

 

[Glenda]

I can't tell you enough about what it means to talk to somebody like yourself. It's hope that my son can manage this horrible disease. Check out Dr.Dahlman for his protocol. I think the best analogy was saying that if you put poison ivy on your arm, it would get inflamed and you would remove the poison ivy. But, if you kept putting the poison ivy on the same spot it would get worse and scar and become infected. If we are allergic to certain foods and we eat them, we can't see the body's response to the allergen. In some people the inflammation is so severe that the immune system kicks in.
So our plan is to get him through this last year of school and then learn about the allergies anne follow dr. Dahlman protocol and continue with the LDN
Thanks again for replying with your experience