LDN gave me my life back

I started LDN almost exactly one year ago, and it has changed my life. :ybiggrin:

I originally heard about LDN on this website and it sounded like it was worth a try, especsially because i had previously tried quite a few treatments with little or no sucess. So after lots of research, i went to my doctor with studies and information on it, and even though he seemed apprehensive about it working, he agreeded to let me try it. I started taking 4.5 mg every night, right before bedtime. I know some people start out with 1.5 mg and work their way up, but i didn't notice any problems starting out at 4.5 mg, although i'm sure it varies from person to person. The only side effects i've noticed are constipation (which happened during the first month of taking it, and lasted for around two weeks, but hasn't happened again since), occaisinal vived dreams, and grogginess when i wake up. these are quite mild compared to other drugs used to treat this disease, like when i was on remicade i pretty much always had a cold, and i got various infections quite often. something i've noticed sice beginning LDN is that it seems to have strengthed my immune system, since starting this medication i haven't gotten a cold or the flu once, even this past january when my entire family got the flu, i somehow managed to not get it!

After around 1-2 months of being on LDN i started to see improvments. I started gaining weight, feeling a lot more energized, and all my symptoms were diminishing. At 3 months nearly all my symptoms were gone. (I should note that i'm diagnosed with moderate to severe crohns disease, with a very large amount of ulcers on the lining of my intestines, so my disease isn't easily treated.) i got blood tests 3 months after starting LDN and my SED rate was 21, which was a dramatic drecrese from the last time i had had blood tests, which i think were around a month before starting LDN when my SED rate was at 50!
I think i should mention i'm not on any other medications, the only other thing i'm on is a gluten free diet, because i have a mild gluten allery. Before LDN i have tried quite a few treatments: remicade (didn't work), pentasa (didn't work), prednisone (allergic), the elemental diet (i did see some improvments with it, but it wasn't helping with all my symptoms), and flagyl (gave me very bad D, and made some symptoms worse). I was looking for a way to treat my disease with the smallest amount of side effects as possible, and it turns out this drug is the solution i was despretely searching for.
Today, i'm at a healthy weight, i'm very active, and i eat pretty much whatever i want, which is amazing, especially after being on the elemental diet for a very long period of time. I honestely never thought i would be this healthy again, i feel very lucky to have found the drug that works for me. :ybiggrin:

Glad you are doing well, and hope you feel well forever! I wanted to start LDN a while ago but my GI wasn't keen to prescribe it, so I'm on Aza (been on it 22 days) too early to tell if it's working but iv definitely been feeling better from it.

Larissa

Your post made my day. Nothing tickles me more (since Elmo was kidnapped) than a story about someone.. especially a young person with their life ahead of them.. responding so well to the LDN treatment. It is sort of.. I dunno.. perverted.. that the onset of good BM's is something we celebrate. But, especially if we've gone on a modified diet to try to stop the big D... when things get back to normal.. we have to adjust our diet.. eat like normal people.. not to get constipated. Small price to pay.

OK, enough mindless prattling from the old guy. Again, congrats. All the best in your future.

That's awesome Larissa! I'm so happy for you! I am just starting my third week of LDN (also on methotrexate and budesonide), and so far have not seen any results, but I am hopeful.

Great Post Larissa.
I'm so glad it is working for you and may it continue forever.

thanks for all of your support guys! it really means a lot

joshua, it's too bad your doctor won't let you try LDN, i really wish doctors would be more open minded about letting patients try LDN . but i'm glad to hear you're starting to feel better and i hope you continue to feel well.

kev, i have to thank you for all the information you've contributed about LDN and your experiance with it on this website, reading your story really made me want to give LDN a shot and you answered all the questions that i had about it. so thank you so much. and you're right about good bm's being something to celebrate, it is quite strange when you think about it. haha

Lisa, i'm keeping my fingers crossed for you, i hope you'll start to see improvments soon! it would be so great if LDN could help you, like it has helped me. Good luck!

Jacqui, thanks so much!

Hi All,

New to the forum, but would like to add my experience with LDN.

I was diagnosed with Crohn's in 2005. Put on Asacol. Seemed to help somewhat with symtoms? My gastroenterologist is pretty thorough, and regularly monitored my blood while on Asacol. Turned out that Asacol was affecting my renal function and shutting down my kidneys. This was confirmed with a nephrologist, and the Asacol was immediately stopped. Doctor tried Entocort with limited success. Biologics like Humira and Remicade were considered but ruled out due to the fact that I also was diagnosed with Cutaneos T- Cell Lymphoma (CTCL) in 2005. Luckily, the CTCL was in an early stage, and aggressive UVA Radiation treatments (initially 3 times per week, now once every 3 months) have kept the CTCL in remission. However, because of the CTCL, the doctors would not even try Humira or Remicade due to the fact that these drugs could cause or increase the risk of cancer. Prednisone was the next choice to help control the chronic inflamation in my small intestine, but that is not a drug that can be taken on a long-term basis due to the serious side effects it has. My gastroenterologist sought consultation with 2 other doctors on my case, and the agreement was that I was a candidate for colon surgery to remove the Crohn's Disease in my small intestine. Thus, I had surgery in May of 2008. Seemed to help initially, but by March of 2011, the Crohn's was back and active in my entire small intestine.

This time surgery was not an option, so the only recourse was to keep me on high doses of Prednisone. The side effects were terrible and caused weakness & weight gain to the point that my ability to do normal daily functions was severely affected. Left with little choice but to continue with Prednisone, I started to search the Internet for other ways to control the Crohn's. Came across a number of threads that led me to research that Dr. Jill Smith of Penn State University was doing on LDN for treatment of Crohn's. Collected documentation on the successful uses of LDN for Crohn's and presented to my doctors. Not one of the doctors would consider prescribing LDN since it was an "off label" treatment that they were not familiar with. I was bold enough to contact Dr. Jill Smith directly, and explained my case to her. She offered to consult with my doctors about LDN, but none took the opportunity to contact her. However, my gastroenterologist wrote up my case, and the insurance company agreed to pick up the expense for me to go to Penn State University Medical Center to see Dr. Smith. Due to my decreasing physical condition, Dr. Smith cleared a spot on her calendar and saw me in June of 2011. Spending about 2 hours with me and reviewing all the test results I brought with me, Dr. Smith felt that I was a good candidate for LDN.

She gave me the prescription which I filled that same day using the pharmacy in Lancaster, PA that Dr. Smith used to supply the LDN for her clinical trials. Within a few short weeks on LDN, my physical condition improved, and my Crohn's symptoms were reduced. I was feeling much better than I had in a long time. Just prior to Thanksgiving in 2011, I suffered a gallbladder attack, which landed me in the hospital for 5 days. After tests confirmed a diseased gallbladder, the decision was made to remove my gallbladder. Due to my previous colon surgery and resulting scar tissue, the surgeon needed to modify her approach to removing my gallbladder. After the surgery, the surgeon came to see me and told me that while removing my gallbladder, she took some time to examine my colon since she was aware of my Crohn's disease. She reported to me that she could find no evidence of active Crohn's disease. Furthermore, CT and MRI tests that were taken in the hospital just prior to my surgery, indicated "no evidence of inflammatory bowl disease". This confirmed to me that the LDN had made a difference with my Crohn's. I continue to take LDN every night, and feel the best I have felt in many many years.

I have slimmed down to a normal weight, have my energy back, and have normal bodily functions with no Crohn's symptoms. Without Crohn's, I am able to eat normally and finally actually absorb the nutrients from my food that the Crohn's was previously preventing. My system seems to be in good balance, and I feel great! My gastroenterologist has seen the difference that the LDN has made, and recently wrote me a renewal prescription for LDN. I know this has been a long story, but I just wanted to give hope to others suffering from Crohn's. You need to be your own best friend and seek alternative treatments when traditional methods for some reason fail to help. LDN has changed my life, and I believe it has the ability to make a difference with others suffering with Crohn's. Don't give up!

I appreciate the positive comments, too. I've just passed the four week mark, and haven't seen any big changes. It gives me hope to hang on here and wait for changes. And I really do hope I see something...otherwise I'm not getting a refill.

Hi LaLaNapa,

Stay with the LDN for a few months. Keep taking your other meds also. The way the LDN is supposed to work is that it helps boost your endorphin level. It may take a while for your level to get to the point where it is effective against the Crohn's. I think when Dr. Smith did her trials, the period of the study was 12 weeks. I don't think there are any negatives to staying on it a while, so I would stick with it at least 12 weeks. Hope this is some help.

Regards.
Ernie

Thanks, Ernie:
I should have clarified when I said "I'm not getting a refill". What I meant is that my GI doesn't want me to continue it after 12 weeks if I don't see any affect. She would want to try me on a course of Entocort and 6-MP. I'm trying to keep off those "harder" meds since I have mild to moderate CD with very minor symptoms (and I've had horrible issues with side affects in the past from other meds). So, of course, would really like to stick with LDN. Mostly, I just want my energy back.
Thanks again!

I have been off the forum for a few weeks --- so great to sign on and see SUCCESS with LDN for others. Larissa it is so wonderful for someone so young to take control of their health and feeling better...that is awesome! I have been on LDN 15 weeks and am also seeing success. I also have mild/moderate as well and was diagnosed about a year ago --- none of my drs wanted me to take LDN and tried all their scare tactics...I ran across LDN accidentally and started it right away. My see/CRP rates came down significantly within the first 8 weeks. Each of my dr did their own blood work as they weren't really on board with "believing the other" ... LDN is working! I also take supplements and monitor foods still. Take care and continue to feel well!!

Great stories Larissa and Ernie. Chloe is also 16 and Ldn is the only crohns drug she has ever taken besides prednisone in the beginning. Those of you who are just starting, keep it up. If you flare, treat the flare but stay on Ldn. Larissa, Chloe also hardly ever gets sick. We all got the flu and were really sick and she just kind of sniffled for a few days and then was fine.

By the way Larissa, you and Chloe kind of look alike!

Hey lalanapa just wondering how you're doing? Seeing any improvements?

Thanks for checking in on me! I still don't think I've seen too much of a change. I think there may be some improvement, since I'm taking less fiber than I used to...but, well, you know, don't seem to notice too big of a difference. (Yeah, a Crohnie can't have a conversation without mentioning BM's. )

But it's been just over 5 weeks and I still don't have a lot of energy...or even a medium amount. I am starting to wonder if it's not some other deficiency. I'm already taking B and D vitamins, among many others. But I can't seem to get motivated and then anxiety and depression seem to just follow on the heels of tiredness, thus creating a cycle of non-motivation.

I know I need to stay on top of my quality calorie intake, though, and I think that some of this may be the result of still just not eating enough. I get so afraid to feel badly from what I eat that I tend to not eat enough.

Thanks, again!

Hi LaLaNapa,

Did you test as deficient for vitamin B12 and vitamin D? If so, what were your levels and when were you last tested? And have you ever thought of giving magnesium a shot? It's a huge one for energy/anxiety/depression and most Crohnies are deficient.

Thanks for the idea about magnesium. I have had my Vitamin B12 and D levels checked - originally a little over a year ago. And while I wasn't below normal levels, I was low. I was last checked in November. At that time my B was actually over 2,000 - off the chart! My D hadn't increased very much - I want to say around 50 still. So I have increased my dosage on D. But I should have my annual blood work with my GP so I will ask her to have magnesium tested.

Couple of folks have commented on this, but I've noticed it too. I seem to have more of an immune protection to colds, flu, whatever, than healthy people do. However, I'm not sure if it is an effect of taking LDN (any hypothesis out there) OR if it is that Crohns raises the immune levels... I may be over simplyfying it, but I 'thought' that Crohns was an immune based bug.. it perverts the immune system so that it leaves crohns itself alone but goes after normal 'healthy' flora in the tract, and even attacks healthy tissue. Is this 'wrong'?

Jason:
I felt very much like you do. Felt trapped and at the end of my options: I had allergic reactions to 5-ASA drugs and was told the only other step would be immunosuppressants. That was too much of a gamble for me - I felt like I needed to work with my immune system and help it work better, not work against it. I'd modified my diet and gone to a naturopathic doctor, but I still had inflammation in my TI. But thankfully my GI (at UCSF at that) let me try LDN before moving on to Entocort and Azathioprine. But I really didn't want to start any steriods due to the side affect of depresssion and anxiety - I already had those! Truly, I felt that past three years were some of the worst of my life; feeling like I could not crack the code.

It took 3 months for me to see a difference. I can tolerate a lot more food, have had no fevers (which were pretty regular) and no painful bloating (also regular). And best of all, I think there must be a "side affect" of a much more positive frame of mind. I don't know if it just not being in pain all the time (which literally can change your brain chemistry) or the endorphin boost from LDN. I feel I have to power to stop the "negativity train" in its tracks now.

Come December I will have a follow up scope or MRI (my choice, whee!) and know for sure what's happening on the inside. But all in all it was the best choice I made to do the research, ask my doctor, and find a back up (my ND was ready to prescribe if need be). I hope you will be able to do the same!

Hey Jason, maybe try find a doc who will prescribe LDN, as for immunosuppressants, you have more chance of gettin hit by a car than dying from their potential side effects, I was reluctant to go on imuran for ages, now I'm so glad I did, crohns is in remission thx to it

Jason you'll never know if its too good to be true unless you try it. The great thing with Ldn is that at its worst it does nothing, so you have nothing to lose. Give it a shot and let us know what happens ok?

I think it is the unknown of it. There has not been enough research done on it. They not even sure how it works to bring Crohn's into remission. The studies done have not been big enough. That was my son's GI's biggest thing he kept coming back to was he wasn't sure how it worked but the few studies he had read showed promise. He was actually the one to suggest it. There is also not a standard of care with it. My son just had a check up and we were talking and he told me Jack is the only one of a handful of patients he has on LDN that is doing great and we started talking about how the LDN is compounded and when they were taking it, none of which he was aware can make a difference. I ended up writing out the instructions I took to the pharmacy and when we took it, so that at least all of his patients on it will be doing the same thing. He was ready to give up on LDN but with as well as Jack is doing (scopes showed healthy tissue and no sign of active disease) he is willing to give it another try and definitely reconsidered pulling Jack off it.

I would print out the studies that have been done you can find the links here http://www.crohnsforum.com/showthread.php?t=31142

Good luck it has been a miracle drug for us, hope it is the same for you.

Jason,
My daughter is 16 and has been on LDN almost a year. It has given her her life back, my only advise is don't give up. It took us a year to find a doc to prescribe LDN. She has been to 2 GI docs, neither would listen to me about the research I had on LDN. I found a family practitioner who is also a homeopathy doctor and he had no problem with prescribing it. I started her on LDN without the GIs approval and never looked back. Her GI was not happy about it but he hasn't dumped us yet. I told him i would keep her on Apriso with the LDN which i have, although I really don't think the Apriso is helping at all. Eventually i will take her off the Apriso. Her last blood results were great except anemia.
Maybe you could ask your GI to prescribe it for at least 6 months. If not, check the lists of docs that will prescribe and try that route (that's how I learned of the family practitioner)
Best of luck to you, I will keep you in prayer!
Keep us updated
Sharon

Jason, Print out information on TNI Biotech especially the update on May 2013, this may help convince your doctors as well.

Here is the link to the May 2013 press release and info on TNI Biotech regarding LDN
http://www.prnewswire.com/news-rele...lders-discussing-recent-events-207688201.html

This will probably be a dumb question but I'll ask it anyway.

Would LDN be helpful for those of us with ulcerative colitis or is it only for patients with Crohn's Disease?

And if the answer is yes does that apply to any medicine for CD or just a few or none?

I apologize for this, I was diagnosed about a year ago and I'm still new to this stuff. Thank you to those who answer, I'm seeking the same thing all of us are striving for, remission.

Hey OnTheEdge...go to http://ldninfo.org/index.htm#What_diseases_has_it_been_useful_for where you will see that ulcerative colitis can be helped by LDN so go for it.
Hey, Jason...that's the spirit. This is exactly what I tell people. Take charge of your health and don't take no for an answer for something that is clearly in your best interest. I love where you said "I am fully prepared to drop him like a sack of dirt if he isn't willing to work with me on this". YES..YES...YES...these doctors need to know that they work for us and really...how many of them are doing research into newly tested modalities...where do they get their new info....pharmaceutical sales reps????...sheesh. Anyway, I've been a patient advocate for this drug therapy for over 10 years now and am currently calling doctors from my list of "LDN friendly docs" to inform them of the upcoming LDN conference and hoping to get them to agree to be interviewed by someonw at the LDN Research Trust in the UK. It is time people for all of us to wake up to what is going on here. Many people are making a lot of money on pharmaceuticals that do nothing to help people in the end.
Ok, gonna get off my soap box...lol. It is possible that there is a doc on my list in your area. Anyway, good luck and know you are definitely on the right track.

Thank you JoyceF for the link. I will definitely try LDN out, the only problem is finding a compounding pharmacy in or near Texas. There isn't one from the list of pharmacies on that link.

Skips Pharmacy in Florida does mail orders. You can use any compounding pharmacy. I use one locally that is not on the list, I just gave them clear instructions on how it needed to be compounded and also Skip's Pharmacy number in case they had any questions. It has been working well.

Oh not to worry about the location of the pharmacy. I actually live near Chicago and get mine compounded by Skipspharmacy in Florida. Just have to fax over the prescription and they deliver it right to your postbox

I talked to my gastro about LDN and predictably she wasn't with the program. She viewed some information on it for less than 10 minutes and she didn't like that it hasn't seen a lot of clinical trials, didn't think it would work or help me and wouldn't risk her medical license to prescribe it to me.

Basically what I expected to hear, as I've already been researching potential doctors who would be willing to at least let me the patient, you know, the one with the lifelong chronic autoimmune disease to find out if it works for me.

What also worries me about her is that she keeps trying to push corticosteroids on me, and I told her flat out that I didn't want anything to do with them. Her insistence on the subject makes me wonder if she is getting money for them.

Oh my goodness...you better believe that these docs are on a quota with these idiotic pharmaceutical companies. Makes my blood boil..sorry.
I have a list of "LDN friendly" docs all over the country and others overseas so let me know if you'd like me to check in your area to see if there are any that might go along with YOUR program. I say fire this one and see someone with a little more foresight.

JoyceF said:

Oh my goodness...you better believe that these docs are on a quota with these idiotic pharmaceutical companies. Makes my blood boil..sorry.
I have a list of "LDN friendly" docs all over the country and others overseas so let me know if you'd like me to check in your area to see if there are any that might go along with YOUR program. I say fire this one and see someone with a little more foresight.

Click to expand...

I would believe it. I'll be sure to ask her straight forward if she has a added incentive to get me on those things besides trying to help me get into remission.

Yes please check for me in the Houston,TX area for any doctors who are "LDN friendly". I would appreciate it. I likely won't start to take it until I have my next colonoscopy which is in less than a month but I would like to know who would Rx it for me.

These doctors seem to forget who is the patient, who has to pay for the Rx and who has to deal with the long list of side effects.

I do have about 20 doctors in Texas on my list and 3 of them are in Houston. Just Pm me with your e-mail addy and I'll send you all that I have. I'm not familiar with many of the locations. Some of the others might be close enough even though they are not Houston.