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Low Dose Naltrexone (LDN) Support Group

JDTM

OMG LDN BBQ
Also, I was on 9mg for a week (then tapered down to 6mg, then 3mg). However, considering Grace's age (and her size), I would defer to a GI in terms of how much budesonide is appropriate.
 
JDTM, did you having any side effects with budesonide? That's generic for entocort right. My daughters on LDN a year now and loving it. Recently her GI RX entocort for 2 mos then weaning down from there.
Thanks
 
Hi,

I'd like to join this LDN support group. After a year of seeing GI docs, including three at Stanford, I have finally been diagnosed with mild Crohn's Disease after careful review of my capsule endoscopy film. The Dr. prescribed Pentasa but when I went to pick up the rx, I was told it would be $615 because I have to meet a Name brand Rx deductible. I couldn't afford it, so told them to keep the Rx on file. After I meet the deductible, it will be $40 copay as long a as there is not a generic equivalent. I'm not sure if I want to take it. I really want to try LDN though. I have an appointment this Tuesday to see an MD in San Francisco who prescribes it. He's holistic and is also a GAPS diet practitioner. I'm debating whether to take both or just the LDN by itself. I'm on a customized GAPS/Paleo Autoimmune diet and have had many improvements with it, but still have a number of on/off extraintestinal manifestations. I am so encouraged by the great results many of you have had with LDN. Thank you all for telling your stories.
 

Jmrogers4

Moderator
Welcome to the group ginnyrdhap.
You can certainly do both Pentasa and LDN together. My son did but we found the Pentasa for him did not make a difference one way or the other and at $80 for my copay on it (there is not a generic) it wasn't worth the cost.
Good luck with your appt. let us know how it goes.
 

Kev

Senior Member
Closer and closer. Letting my imagination run wild, but hopefully someday someone will hold a parade to commerate the discovery of LDN... while others protest what took so much time for the news to get out. 2014... hmmm, I wonder how many folks could have been spared years of suffering IF this breakthough had been heralded back in 2007?

Patience is a virtue... guess I'm just not that virtuous. I'm glad I got on it way back then.
 
Hi Kev,

I love your passion and conviction for LDN! It is mind boggling to me also that a medication this amazing is such a secret. Now that I know how it can help so many conditions, I just want to shout about it from the roof tops. I have two family members with HIV/AIDS that are on a number of harsh medications. I am hoping that hey will both look into the research showing how well many AIDS patients have done with LDN.

I've had a flare up of symptoms today and this is making me even more anxious to get my prescription for LDN on Tuesday and to start taking it right away. I will make sure my local compounding pharmacy follows the recommended instructions for compounding it. I am sensitive to rice and corn fillers in meds, so I have to make sure they don't use those grains if possible.
 

Kev

Senior Member
Actually, from what I gather... it was while treating HIV/AIDS patients way, way back that lead to discovering low dose Naltrexone. I don't recall the name of the doctor, but he was trying to help HIV/AIDS patients. Those who had contracted it from IV drug use were at risk of catching other strains of HIV/AIDS if they continued their drug use. So, to help them kick their habit, they were placed on normal doses of Naltrexone. That lead to an interesting observation... of the two distinct groups, the IV drug users who were on Naltrexone started doing much better than the others... the only difference between the two was the Naltrexone treatment for their drug addiction. That eventually lead to a eureka moment... and the experimenting with dosages. Eventually, someone figured out that lowering a dosage... to just enough to trigger the rebound event.. was the key.
Sadly.. or happily... depends on your point of view... this initial discovery was in the 80's.
I guess if there is one... I dunno.. 'good' point to this... is that out of the tragedy that is HIV/AIDS... LDN was.. conceived. I mean, it is nice to think that finding something with the potential to do as much good as LDN ... I guess it is akin to being presented with lemons and making lemonade. I don't know if putting it that way does HIV/AIDS justice, or diminishes its relevance. I certainly intend no offence. Thanks to it, LDN has saved my life. It would be nice if, coming full circle, LDN is now able to help those with HIV/AIDS too.
 
Whoohoo! GI is letting me try LDN (while I'm taking 6-MP)! He keeps telling me he thinks it's a placebo, but who cares, he's letting me try it. I told him my plan is to take both concurrently and then hopefully stop the 6-MP in a few months, when LDN should be working.

My doctor didn't realize that it needs to be compounded, so he's mailing me the prescription. I know Skip's is a good pharmacy to use - is there an equally good one closer to MA? Also, do you mail/fax your prescriptions in, or do you have the doctor call it in?
 
Hi, I'm so glad I've found this forum on LDN. My 20 year old daughter was just diagnosed with crohns/ UC in May and was hospitalized for a week. She was treated with high doses of Prednisone which we are finally lowering. She is taking 2 Liadra a day. She has improved and is eating well and finally gaining back the weight she lost in the hospital. My question, can she start LDN while still on Prednisone. Also, can it be taken while using Lialda? I am also looking at high CBD mm which is legal in Ca. Does that interfere with the effect of LDN.
What is this Skips that is mentioned as a source? Thank you for any help
 

Jmrogers4

Moderator
Shouldn't be any issue with Lialda which is a 5-ASA and many my son included have taken LDN with 5-ASA's. The recommended dosage of Pred alongside LDN is 10mg, not sure about mm and LDN hopefully someone else will be able to help there.
I have no problem with it but given it is illegal where I live and my son is only 14 it is not one of our options, but there have been quite a few who have gotten some relief with it. I would definitely check out the MM forum in the treatment section.
In my understanding LDN binds to your opiod receptors making opiate reactions less. It is used in much higher doses as Naltrexone for treating opiate dependency like heroin.
Skips is a pharmacy in Florida that has a lot of experience compounding LDN for IBD as you need to make sure the right fillers are being used, the naltrexone used to compound is fresh and that it is a quick release formula and not slow release.
 
I just spoke to a pharmacist (Phil) at Skip's Pharmacy in Florida about LDN. He explained all the options for compounding. I'm not sure now which option to choose. He said the pill form can be made up as a capsule in either a regular capsule that sometimes has a dye in it or if the doctor specifies, it can be made with a clear "veggie cap". For fillers they use dried beet and spinach powder to add color which ensures proper mixing, as well as Avicel (microcrystalline cellulose). However, if the patient needs hypoallergenic capsule, the doctor can specify that the only filler is sucrose (Table sugar). The other delivery systems are liquid, for people who have a hard time swallowing capsules, or a transdermal cream for those that have absorption problems. I know I'm sensitive to fillers made from wheat, rice, and corn, as well as silicon dioxide, but I might be OK with beet, spinach and cellulose. But maybe I should try the cream for better absorption. I had a score of 8 on a recent Fecal Fat Absorption test, showing that I'm not absorbing as well as I should be.

Are most of you using capsules and what fillers do you prefer? Anyone try the liquid or cream??? My appointment with the doctor to get the prescription is tomorrow, so I need to be ready to tell him what to write on the prescription. My local pharmacy in California does compound LDN but I'm going to use Skip's for now because I want to make sure it's done correctly. Thanks for any feedback. :)
 

Jmrogers4

Moderator
We have it compounded local and use sucrose for filler and in capsule form. Jack definitely has an absorption problem which is why we do the semi-elemental nutritional supplements but he is doing well with capsule form.
 
Thanks JMrogers4. Glad Jack is doing well with the capsules even though he has an absorption problem. What made you decide on sucrose filler versus the microcrystalline cellulose and vegetable dyes? Do you have them use the special "veggie caps" for the actual capsule itself?
 

Jmrogers4

Moderator
Just figured it would be "safe". I'm sure he would most likely do fine on the others but wanted to give the LDN every chance and didn't want to write it off as not working when it was really the filler that was causing problems.
We have it compounded locally but gave them strict instructions, talked to the pharmacist and I believe he even called Skips. Jack's GI had no idea about all this but I was able to research everything as we had a month from prescription till he started taking it. He was just getting ready to leave for camp in a couple of weeks at the time and didn't want to mess anything up before camp but still wanted to give him enough time before school started in case there were any issues.
His GI had also Rx'd to a few other kids at the practice apparently none of them are doing as well on LDN as Jack so he had me send the instructions I gave to pharmacist as well as how we take it (at night) so he could check in with the other patients to see what was different and if that was a cause of it not working. Also if he were to Rx again he wanted precise instructions for patient to follow. Can I tell you I just love his GI!
 
Do you need to specify those type of instructions on the prescription itself? I'm going to try to get it filled by Skip's. My GI is really unfamiliar with prescribing LDN, and he's going to mail the prescription to me.
 

Jmrogers4

Moderator
If you are going through Skips I wouldn't worry about it. I would put on the prescription "to treat Crohn's" I know Skip compounds it for many other diseases like MS and I don't know if there is a difference in the way it would be compounded for different diseases.
 
Maybe you, as the patient, can specify to Skip's exactly how you want the prescription for LDN filled, however, the pharmacist I spoke to today, Phil, said to have the Dr. write on the prescription if I wanted veggie caps or the sucrose filler. I assume the doctor should also specify whether to use the cream or liquid if that is what the patient needs.

I'm with you JMrogers4: I don't want to take any chance of having fillers cause a problem with my results. I have had too many reactions to fillers in medications and supplements. It can be very difficult to sort out if the reaction is to the filler or the med/supplement.

I've decided to hold off on the Pentasa for now because if I start it at the same time as the LDN I won't know which medication is the cause of any positive or negative results. Better to keep it clear cut. And I will definitely give the LDN at least three months before evaluating it. (Thanks for that tip Kev).
 

Kev

Senior Member
Couple of things... 5-ASA is one of those... it can't hurt, just might help.. sort of drugs the doctors put us on... I don't know if anyone ever had a eureka moment with any of the varied 5-ASA... Asacol, Pentasa, Salofalk... please feel free to toss in any I missed. It is an anti-inflammatory... and I took Salofalk for years (just stopped late last year).. so I know (at least in my case) it didn't interfere with my LDN (mind you, I never saw any benefit from taking it... except it kept my doc happy that I was taking a traditional drug when she agreed to experiment with LDN for the 1st time). Just tossing that out there...

As for fillers... I used to be extremely sensitive to lactose... so much so that lactose in a brand name multivitamin I was taking would set me off. So, specifying a filler you know is OK with your system makes sense. Better that than taking pot luck.. the pot you end up on may not be to your liking...
 
6-MP gave me pancreatitis, so right now I'm crossing my fingers that LDN works. I spoke with a pharmacist at Skip's today, and my doctor should be calling in or faxing the prescription. I asked if I should have the doctor specify what type of capsule, and the pharmacist said that once they received the prescription, the triage team would contact me and ask me all of the relevant questions. I'm worried the recent development of pancreatitis will make my GI hesitant to actually call it in.

The GI thinks my only options are Humira and Remicade now, so I'm printing out all the LDN research to bring in to my appointment. He thinks any benefit I would see from LDN would be residual effects of the 6-MP in my system (I was only taking 50mg for 2 weeks, and then 100mg the night I developed pancreatitis), but hopefully the mucosal healing seen in the studies and the fistula closer noted in two cases will convince him it couldn't hurt to at least try it before pulling out the really big guns.
 

Kev

Senior Member
Hmmm, if only I knew someone who had pancreatitis from Crohns and was also on LDN... Oh, right... that would be me. Pancreatitis, including pancreatic cysts which at early stages were mis-diagnosed pancreatic tumours... didn't get that corrected until the CAT scan... wasn't a good time. My father had died from pancreatic cancer, so initiallly I thought I was a goner too. So, I hope that allays any fears you may have (pancreatitis is not fun, and the cysts can be incredibly painful). Drinking water, clear fluids, can help with flushing out bile, and reduce production of more bile. I hope this is of some help, OK
 
I would be interested in names of Dr in SF area that are willing to prescribe LDN. My daughter is coming off a high dose of prednisone and is down yo 25mg this week. Also her GI never mentioned Budesonide which looks like it has fewer side effects.
 

Kev

Senior Member
Figure your best chance of finding one might be via the lowdosenaltrexone.org website. I would suggest a two fold attempt... ask about doctors in your area, or compounding pharmacies. If there is a compounding pharmacy, chances are they know which docs do prescribe it... and I'm betting they would be willing to share that info. Just a thought.
 
Hello Searchingforhealth:

The doctor in San Francisco that I just saw is Dr. Thomas Cowan. His website is: www.fourfoldhealing.com where you'll get lots of information about his philosophies and new patient info. He's a holistic MD. Not super friendly but I didn't care, just wanted my LDN prescription. He also recommended that I look into CBD (from Cannibis) and something from Europe called GC MAF. I'm checking these two things out, but I can't wait to start my LDN as soon as it arrives in the mail from Skip's Pharmacy. Let me know if you have any other questions about Dr. Cowan.
 
Hi Ginnyrdhap, thank you for your info. I did look up the doc on yelp and he did get some very negative reviews but we may be desperate enough to call anyway. I did talk to the pharmacist at Skips and they were very helpful. Please let me know how the LDN is working.
 
Hello, I'm using Methotrexate injections right now and in one or two months, I will also use Cimzia. I do a lot of research on the internet but I can't find clear informations about using LDN with Immunosuppressant drugs. (in my case, using LDN with Cimzia and Methotrexate)Do you have any information about that? I asked this question on another LDN forums, platforms I also did lots of research on www.crohn'sforum.com and healingwell.com but all I can find is confused comments. What do you think about this problem? Do you have any information?
There is a link about that but this link can't satisfy me. Here is the link: http://www.webspawner.com/users/avoidthesedrugsonldn/
I guess this problem does not have a right answer for now but it must be solved because there are many people who seriously wonders that.
Thank you for sharing your thoughts, informations.
 
Searchingforhealth:

I saw those negative reviews on Dr. Cowan also. He did get some positive ones as well. I figured since I was just going to him for the prescription for LDN I could put up with his arrogance. It was expensive though. $350 to see him for the initial visit that lasted 45 minutes. But that does get you free access to his nutritionist who will answer any questions you have by phone about the GAPS diet. I'm going to send my insurance claim into Anthem Bluecross and see if I can get any reimbursement from them for an out of network provider. His front desk assistant, Laura, was very nice and helpful. If you want the LDN Rx, I think it's worth a visit to Cowan. He gave me 5 refills on it and any follow up visits that are needed can be done over the phone.

To everyone else in this support group:

Has anyone heard of this treatment out of Europe called GC MAF.? I found a few Youtube videos about it, but nothing very impressive. Here's a link to a company in Belgium that makes it and ships all over the world.

http://www.gcmaf.eu/gcmaf-products/gcmaf/

I don't really understand what it is yet, but Dr. Cowan said it's being used in Europe to treat Cancer, HIV and all sorts of auto-immune conditions. I have a feeling it's expensive. Initially it was in injection form but an Italian Dr. has found a way to culture it with a probiotic yogurt. Very interesting, but I need a lot more info.
 
Crohn2357, I am taking LDN from Skip's (started last night - I am a walking today because I don't know that I slept more than about 20 minutes!), and the package insert that came with the medication says, "Patients who are taking immunosuppressive medication on a permanent basis are cautioned against the use of naltrexone." I don't know if that's what you've been reading elsewhere or not, but I thought it might be helpful somehow. Maybe you could call Skip's Pharmacy and ask them, since they do a lot of work with LDN?
 
ChristieJP, thank you for your response. I'm in a Eastern country; so calling them may be difficult for me but I e-mailed them yesterday and I've been waiting a re- email from them.

I really want to start LDN but in my case, if they cancel each other or make each other useless that would be a big problem then.
 

Kev

Senior Member
ChristieJP

OK, my first thought on the sleep disruption... it was your 1st night, your 1st pill.. were you 'keyed' up that you were starting on this? Excitement, adrenalin, does weird things to us. Back in my youth, I worked as a bouncer... not for the feint of heart. Whenever a fight or brawl would breakout... the residual 'adrenalin' would keep me.. on the edge.. awake... alert.. up for hours afterwards. Now, as for LDN... I can't offer any concrete advice. I've always had this ability to sleep like a baby. I could sleep through anything.
Maybe LDN didn't affect me in that manner because of my inate ability, or maybe only a few people are affected in this fashion. I really couldn't say. Hopefully, this was a once only experience. Or it settles down with time. Or you find a way to overcome this..

All the best
 
ChristieJP, let us know how the LDN is working out. I heard that it can give you vivid dreams but a whole sleepless night? Maybe just for the 1 st night. Can anyone suggest a good sleep inducing remedy? I like pure coconut water.
 
Kev & Searchingforhealth, thanks for your thoughts! I am going to assume it was a one-time thing. I do have difficulty sleeping from time to time. About a year ago, I started taking 2 Vitafusion melatonin gummies every night about an hour before I want to be asleep and that has helped a lot with regulating my sleepiness/wakefulness cycle). Perhaps I was a little revved up about starting LDN or about something else.

The reason I didn't assume it was just me it because first night with the LDN, I fell asleep immediately (in the middle of a conversation, in fact!), but couldn't stay asleep the whole night. It felt as if the whole night was just me falling asleep and not being able to stay asleep over and over again.

My pharmacist's information packet says that "sleep disturbance" is one of the most common side effects of naltrexone, but that no side effects are noticable with low-dosage. I found this quote on gazorpa dot com: "All sources indicate that LDN has virtually no side effects. Some patients report vivid dreams, and occasionally, during the first week of use, patients may complain of difficulty sleeping. (Reports indicate that sleep disturbance is rare, occurring in less than 2% of users.) If this persists after the first week, dosage can be reduced from 4.5mg to 3mg."

I don't think I'm going to have problems beyond just the first night, since last night (my second night), I slept much MUCH better. Still not as deeply as I normally sleep, but I felt rested when I woke up.

It seems that I am experiencing some nausea that is different from the nausea I usually have due to Crohn's. Normally, I would experience nausea after eating, but in this case, it's sort of a low-level queasiness all day long the last two days (since I started LDN). Perhaps it's related to lack of sleep that first evening. I'm not concerned, and it's not a huge deal, but I'm tracking it as a data point.

Anyone else have side effects they attribute to LDN? Do you even notice you're on it?
 
Woo-Hoo! I took my first dose of LDN last night. I also got it compounded from Skip's Pharmacy. I got a 30 day supply and after paying for shipping it came to just $28. Such a reasonable price, I'm thrilled! Like ChristieJP, I had a hard time sleeping, but I think I was amped up about taking it. At about 1:00 in the morning I felt really warm and nauseous. I almost got up because I was feeling so strange, almost like an anxiety attack starting. But I made my husband hold my hand for a minute and then I just did some deep breathing to stay calm and was able to get to sleep. It felt like a light sleep all night though. Once I got up and started moving around, I felt really good. I've actually had more energy than usual and feel really happy, placebo effect? I'm not sure, but so far so good. I'm very optimistic about this. :thumright:
 

JDTM

OMG LDN BBQ
Hey there Christie! At first I had some fairly vivid dreams and my sleep was a little reference, but now it barely registers that I'm on it. No noticeable side-effects to speak of.

I've heard some anecdotal "it-might-get-worse-before-it-gets-better" stories about LDN, but for me, I didn't really get any worse, per se. The changes that I attribute to LDN were VERY gradual, however -- almost so gradual that I couldn't really be sure if it was the LDN helping me along. Only when I took stock and really paid attention to how I was doing at the moment vs. many months back would I really recognize the difference.

Anyways, I'm glad to hear you're trying it out, and definitely keep us posted on how you're doing!
 
Hey guys! Took my 2nd dose of LDN last night - didn't notice anything different. I've heard that the vivid dreams are proof it's working. Did you guys have vivid dreams from day 1, or did it take a few days? Obviously, I won't really know if it's working for awhile yet, I'm just curious.
Thanks!
 

Kev

Senior Member
The dreams were random... unpredictable... absolutely wonderful, and didn't last nearly long enough.
 
Well! Third night of LDN and WOW, did the "vivid dreams" show up!

My first one was terrible! A bus filled with 10 of my favorite kids (I am a Speech-Language Pathologist who works with little kids with Autism; I don't have or want my own kids, but these were my favorite long-term clients who have become like family to me) sinking in the middle of a lake. I had to rescue them all, and I thought I did, but when I got to shore, I only had nine . . .

Boo! I was expecting vivid dreams about food, shopping, and sex; not sinking buses full of kids!
 

Kev

Senior Member
Well, there is the big downside to this side effect... it could be nice dreams, or naughty ones.. or very scary ones. Maybe it is because I've such a saintly disposition, that mine (excuse me, had to duck a lightning bolt) were wonderful. The vivid details could either be a blessing or a curse. For example.. in my most memorable one, I took a vacation. To a tropic resort... and not one that I've ever visited in my travels. I held a drink in my hand... I could not only feel the etched glass, but the condensation on it.. and taste the drink... I could smell the salt air... I felt the sun on my skin... and the tropic breeze. I could smell food cooking.. .heard laughter... people splashing in the pool. The realism was... well, incredible. I would shudder to think ... how bad... a frightening vivid dream could be. In the overall scheme of things.. looking at the big picture of 'side effects', its pretty mild... even if it is a bad dream you have... because after all, it is only a dream.
 
Thought I would let you all know that I only had that one disturbing dream - for the last 5 nights I have slept (HARD) without bad dreams. I haven't had many dreams at all except for one about snow (which is odd, since I live in the Arizona desert!

Has anyone noticed a change in appetite? (I seem to be less hungry, but I felt hungry all the time before LDN, I assume because I wasn't getting the right nutrients).

For those of you who have been on LDN for a while, what were the first changes you noticed (good or bad)?

THANK YOU to all of you for sharing your experiences and knowledge!

-Christie
 
Hey guys!

I started with LDN five weeks ago for my Crohns.
My doctor told me to start with 1,5 mg, so I took that for three weeks.
The next week I started using 3 mg, and my symptoms actually get worse!
Mostly diarreha with blood.. :(
I have never been so sick for a year. Should I keep going on 3 mg, and go up to 4,5 mg?

Didn't seen any good effect on LDN so long. :(
Hope it will kick in soon, have been sick for three weeks now.

I take Predisolone 10 mg daily with LDN.
 

JDTM

OMG LDN BBQ
Hey there Adam,

I wish I could offer you some advice on the dosage, but I feel like it varies depending on who you ask. I personally started out at 4.5mg and have never changed it since starting LDN, but I'm also probably heavier than the average user (I was 200lbs. when I started LDN at 6'2"). Anecdotally, I've heard that sometimes things can "get worse before they get better" with LDN, but I'm not sure what "worse" means. Sorry I can't offer more solid advice, but hopefully someone else will be along soon that may be able to shed more light on the subject.
 

Kev

Senior Member
The studies (with the exception of the pediatric study) were done at 4.5mg. Although it is called Low Dose Naltrexone, the dose has to be 'high' enough to trigger the rebound effect. I would suggest any time spent at the 1.5mg dose (but what do I know) really doesn't count toward the 10 - 12 WEEKS it may take for LDN to show significant results. And, myself, others... even folks I recently saw on a Norwegian documentary about LDN all report that getting worse.. flaring.. going downhill.. before things turn around is fairly common. It is usually a sign that the LDN is beginning... just beginning.. to do its thing.

My advice to anyone 'trying' LDN... is stick with 4.5mg, proper formula, compounded the right way... use only fresh compound... take it at bedtime, make sure you sleep on it, and tuff it out... even if you flare... for 10 - 12 weeks minimum. If it doesn't work by then, then you might be in the 10 -11% it doesn't work for. But, if it does work, then you are looking at a safe, effective, inexpensive way to control your disease from now on. I've been on it 5 3/4 years. Some folks in the documentary have been on it 10, 11 years. Taking the same drug daily, safely, for over a decade. A doctor on that show who prescribes it rated it safer than an aspirin. He should know.. he is a real doctor.
 
My son was diagnosed a year ago. He has been on many drugs including remicade. He has been on LDN for 2 weeks with little change in symptoms. Does anyone think he still has a chance to improve? It has been an awful struggle so far. Thanks so much!
 

Kev

Senior Member
Well, at risk of sounding like a broken record (and a couple of generations haven't a clue what that refers to.. or sounds like)... I personally wouldn't expect to see good results within 2 weeks. In fact, I would expect some deterioration at first.. that is the really hard part of going LDN. LDN is NOT a eureka kind of treatment... I went downhill on it, then slowly... frighteningly slowly... improved. Almost imperceptable improvements at the start... so minor, it took me a while to gain confidence it was truly working for me.
I've heard others here relate similar tales... and, to show it is not just our local folklore, it was stated on the Norwegian documentary... folks in Norway, and Ireland, reported the same. Why it is fairly common for it to hiccup like that, to get worse before it gets better, I don't know. It can certainly leave one open to a lot of second guessing, etc..
 
I have a question about when to take the LDN. I 've heard on this forum that 9:00 pm is good but what if my daughter stays up to 11:30pm doing homework can she take the LDN later in the evening?
 

JDTM

OMG LDN BBQ
Taking it later in the evening should be fine -- or, it is for me, anyways. I think there's a window of time (basically at some point before heading off to bed) in which you should take LDN, so I'm under the impression that 11:30 should be fine. I usually take mine around 10-ish, and on the occasional night where I stay out late to play a show or whatever, I take my LDN and other meds in the early morning hours (1:00AM-3:00AM) and hit the sack. Hope this helps somewhat.
 
I was wondering about that too - I've been aiming for 9-11, but I was wondering if I should just take it before bed (which usually ends up being closer to midnight)
 
I just spoke to a pharmacist at Skip's Pharmacy and her advice for my daughter who was diagnesed with indeterminate Crohns/colitis in May, was to start LDN with the cream for a few months and than if well tolerated to go to taking LDN at 1.5,for a month, 3.0 and finally 4.5 mg. We will start in 2 weeks when she has tapered the current Prednisone to 10 mg. Has anyone else started with the cream dosing first? She felt it would be well absorbed with this method.
 

Kev

Senior Member
My understanding is... with regard to taking LDN... is it should be taken just before one goes to sleep. And this isn't just to avoid feeling wired, but it works best if taken to coincide with a sleep pattern. I don't think it is tied to REM, but I believe (and I can't for the life of me remember where I read this) ... but the brain needs sleep so that it can accomplish it's own 'housekeeping' as it were.. and if you add LDN in at this point, it allows the brain to achieve the sought after 'rebound' effect. So, it isn't a specific time, so much, as it is timed for when you are asleep. Anyone recall reading the sleep timing issue? I can't remember whether it was posted here someplace, just a link, or another forum even.
 
Regarding Kev's comment about taking LDN just before bed, according to the LDN webpage, the medication should be taken between 9 PM and 3 AM every night because we are encouraging the typical endorphin rush that takes place in the early morning hours. I love his wording that the LDN helps the body with "housekeeping"!

The website says, "The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production."

And . . .

"In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN."

I can't help but wonder what causes faulty endorphin production and why there are more and more people these days who have diseases that seem to be related to endorphin deficiency (auto-immune disorders, cancers, etc.) Maybe we all should be taking LDN - if we haven't been diagnosed with anything yet, we probably will be! Perhaps someday it will be like a vitamin.
 

Kev

Senior Member
I understand a group who were involved in LDN research started doing just that. Taking it themselves as a preventative. I recall when research first suggested taking an Aspirin a day as a preventative.. which led to the introduction of low dose Aspirin. Then I saw that documentary.. and that Doctor in Dublin described LDN as 'safer than aspirin'. Wow!

Anyway... thanks for the followup info. I knew I'd read/seen something with regard to how vital it was to take prior to sleep. And, before anyone asks.. I don't know what you do if you work all night and sleep all day. So, as a pre-emptive strike, don't ask me.
 
Just thought I'd give an update. I had to stop taking the 4.5 mg capsules that I got from Skip's pharmacy because I was feeling so sick, I couldn't function during the day. I had worse than normal nausea, headache, abdominal pain as well as an increase in back and neck pain. I called my Dr.'s office to report the reaction and the receptionist said most of his patients start with 1.5mg and work their way up to tolerating the 4.5mg. I had her send me the 4.5 tablets that he has made up by a pharmacy called Uriel. This way I could cut them in thirds and then in halves to slowly work up to the full 4.5 mg dose. I've been on 2.25 mg for about 9 days now and seem to be tolerating it well. I think I'll try the full 4.5 on day 14.

I also started Pentasa (Mesalamine) 1g four times a day. I had to pay $575 for the first 30 days supply to meet my insurance deductible for name brand medications, Yikes. But now, until the end of this year, it will only be a $40 co-pay each month. After my first dose of Pentasa, I got very sick and the symptoms lasted two days. I thought maybe I was reacting to the cornstarch filler in the capsules because I get sick when I eat any type of grains. But I tried a second dose a few days later and had a less severe reaction. The 3rd dose gave me a weird itchy rash on my wrist, but all the other digestive reactions seem to be getting less and less. I guess my body is getting used to it. So now I just need to be patient, as I understand it can take at least 3 months for both of these medications to really start to show improvement in one's health.

The other thing I just started is seeing a Naturpathic doctor. She prescribed constitutional hydrotherapy sessions, IV nutrition (Myer's Cocktail), and gave me a homeopathic remedy.

So I am hoping, that a combination of all these things will help me get my energy and vitality back and to regain all the weight that I've lost. I'm going to have a positive attitude!
 

Kev

Senior Member
I was on 4G (4 X 2 500mg)of mesalamine (5-ASA) a day. I never found any indication it was doing anything positive. 7 years... all I ever got for my trouble was the occasional migraine headache, and severe heartburn. But, everyone is different. It might work for you. The really positive news is that I can say, based on years of experience, taking it with LDN is perfectly OK. No issue, no delay, no interaction. Took both of them for 5 years. Coming off it was even better.. heartburn, headaches.. oh, and foot cramps..all went away. Amazing what the body gets used to dealing with slowly over time....
 
ok.. I have been reading these post on the LDN and I went out and started looking on web. It states you have to have the doctor prescribe it; but yet some of you are saying that your doctors weren't thrilled some of you were taking it. So how did you get the prescription if your doctor didn't give it to you . My daughter was diagnosed in Feb of 2011. She was doing pretty good since the fall of 2011 .. but she is now in a flare and has her colonoscopy on Monday. she did well on Entocort; but I would like to ask about this LDN??
 

Kev

Senior Member
Naltrexone is an FDA drug approved for treating alcohol and opiate dependancy. In a low dose, 3 studies (2 adult, 1 pediatric) have shown it is a safe, effective treatment for IBD. However, it has not (yet) been FDA approved for treating Inflammatory Bowel Disease. A doctor CAN legally and ethically prescribe it for IBD, the practice is known as off label or off patent prescribing. The majority of doctors are reluctant to do so, as it is still not considered part of the standard of care. So, the biggest issue with going LDN is finding a doctor who will prescribe it. There are no major pharmaceutical companies behind LDN, convincing doctors to prescribe it. Naltrexone is off patent protection, it is available as a generic... so the manufacturer stands to make nothing from undergoing an application for Phase III FDA approval. That approval process costs approximately 150 million. TNI Biotech is slated to seek that approval in 1st quarter of 2014. How long the process will take I don't know. In the interim, without a marketing campaign to pressure more doctors to prescribe it, without FDA approval, MOST doctors are reluctant to even consider it. Some, who are more open minded, or who place the interest of the patient ahead of concern over their practice, WILL. The hard part is to find the willing doctor.
 

Jmrogers4

Moderator
ok.. I have been reading these post on the LDN and I went out and started looking on web. It states you have to have the doctor prescribe it; but yet some of you are saying that your doctors weren't thrilled some of you were taking it. So how did you get the prescription if your doctor didn't give it to you . My daughter was diagnosed in Feb of 2011. She was doing pretty good since the fall of 2011 .. but she is now in a flare and has her colonoscopy on Monday. she did well on Entocort; but I would like to ask about this LDN??
Some have gotten it from doctors other than their GI, GP's, naturopaths, etc. which is why they say their doctor (GI) is not happy.
As Kev says TNI is currently seeking FDA approval and have had their Type C meeting which I guess means it is under review now with FDA and are hoping to start phase III trials in the first quarter of 2014, at least according to their website.
 
thanks for your help. I also put this out to my son, who happens to have a PhD in Pharmaceutical Science. He has said the same thing; they have found in some small studies that it works for some. I am going to bring it up to our specialist tomorrow. Like I said I don't mind her getting back on Entocort; however I am going to fight against those heavy hitters right now. Her inflammation was found in her 6 mnth check up and she hasn't been really getting sick and no pain. So we will wait and see what the colonoscopy shows tomorrow. Thanks again to this forum. I am liking the sounds of LDN
 

Kev

Senior Member
It is sort of a lunatic Catch 22 with LDN. The studies that have been done have all been privately funded... research for the sake of research. No pharmaceutical company with deep pockets to pay stipends, expenses for broad scale research. Think about it. Would you pay out of pocket expenses to be a guinea pig in a research study when the chances are 50/50 you'd be in the control group.. getting a placebo for your efforts? So the number of participants have been small... but each small group has shown identical (OK, identical is not the most accurate term, but I think you know what I mean) results.
And how certain are the researchers they are on to something spectacular. One group started dosing themselves with it... even tho there is nothing wrong with them. Another formed a company and is investing 150 million... so the results must have been pretty convincing. Big pharma is not interested. Naltrexone is available now as a generic. The patent protection isn't there... a one pill a day scenario simply holds no financial appeal to them. So there will never be big studies. And professionals will continue to say there are no big studies. And... countless .. people will not be presented a chance to try it to see if it is their magic pill... despite the odds from the statistics saying it likely will, AND safely. I don't have the medical credentials or knowledge/data to back up this thought, but... my gut tells me that taking one dose of 'typical' Crohns meds is riskier than taking a lifetime supply of LDN. That may be hyperbole, total exaggeration, but I think its true.
 
Kev, I so appreciate your posts on LDN. My daughter will be starting it in a few weeks and I hope we have good results with it! You are wise and insightful about Big Pharma. I think since they spend so much money to develop a drug they are motivated by the need to recoup their investment and are less motivated to ditch the name brand drugs that have ferocious side effects and work to develop safer drugs and do more pure science about IBD and it's causes.
 

Kev

Senior Member
Me ... wise???? Oh, boy, have you got the wrong fellow. ;-) But thanks for the comment. How's that line go... you can fool some of the people ... oh, I forget the rest.

Thing is... not only is there no financial benefit, no big pay off waiting if big pharma did invest in LDN... but, if ... no, when... LDN catches on, they stand to lose millions on their 'bad' (by comparison) drugs that are a cash cow now.

I'm beginning to sound like one of those wild 'conspiracy theory' people.. you know the ones who swear that ... locked inside a vault someplace.. are the plans for cold fusion, a perpetual motion machine, a car engine that gets a 1000 miles to a gallon... all that. Well, thing is... thru apathy, fear mongering, plain old fear, or total fraud and larceny, a lot of decent, ordinary people have suffered needlessly because, intentionally or not, the info on LDN is being with-held, suppressed or dismissed as bogus. To me, that stinks. And, coincidentally, lo and behold, big pharma is making a fortune off those folks. Pure blood money. You can candy coat it all you want, that's basically what it is.
 
ok.. so I take it she could start this though even if he does put her back on Entocort. I think I am reading that people are taking this LDN along with some maintenance Crohns' drugs. My daughter got sick off Pentasa and 6MP, so they are not options for her. That is why we started her on Bosweillia and all kinds of multi vitamins and OPC3 (which has anti-inflammatory herbs) She also was doing a probiotic I believe from Market America. She joined that Market America (basically was bought by shop.com) so she can get all those at a pretty reasonable price.
I see one of the pharmacies that compound LDN is in Canandaigua, which isn't too far from us. I am seriously talking to the Dr tomorrow on this. thanks so much
 
Interested in learning more about LDN for a Crohn's friend just released from ER, but also for myself once I find a GI that'll check for IBD. Thanks!
 
Has anyone used LDN in the topical form? The pharmacist at Skips said it would be a preferable form for my daughter who has Crohns colitis. She felt it would be more readily absorbed. Also she said my daughter should be tapered to 4.5 mg on her prednisone! This won' t happen for 6 more weeks and I"m afraid of a flare if we wait that long.
 
I am about 2 weeks in to being back on 1 mg LDN at bedtime. I am waking up every night, and I don't feel like I am ever all the way asleep. About how long can I expect the sleep disturbance to last? I know not everyone has it. I seem to be hypersensitive to all meds. Seems silly since I am so big (almost 6 foot, around 240) that such a small dose can be doing this, but there it is.

I do have a greater sense of well-being, for lack of a better term, although I haven't noticed any reduction of pain (fibro) or fatigue. I know that seeing improvement in intestinal symptoms may take a while, and I am prepared to stay the course and be patient.
 

Kev

Senior Member
The body is a marvelous thing... and our brain controls it in ways we can hardly fathom.

I've read reports where folks in a control group in a drug trial, or those taking a placebo, achieve/sustain benefits... sometimes in the 20+ percent range. They shouldn't, there is no medical reason for it, but they do. Or, the study that showed folks with a positive attitude are many times more likely to achieve a good outcome, while pessimists fare far worse. Same treatment, same disease, totally different outcomes based on where their head is at. Or one reads of 'wish fulfillment', or even 'self fulfilling prophecies', and one wonders... is there any limit to what our heads can do to us... either negative/positive.

Perhaps the sleep disruptions is an over-sensitivity. Or perhaps it is partly an adrenaline reaction... you are anticipating ... results.. change.. improvement. Like a kid at Christmas. Or, perhaps, since you've had problems in the past, you are expecting there to be issues. And this is your mind making your prophecy come true. I don't know.
Only way to find out for sure would be to have identical pills, some real, some placebo.
This may sound ludicros, even insensitive. I apologize if it comes across that way.
In training folks to shoot... especially handguns... some would develop a flinch reaction, in anticipation of the sound of the gunshot. To get them past it, in a 6 shot revolver you would put only 3 shells... 1 by itself, then a empty chamber, then 2 side by side. If you spin the cylinder and close it, the person pulling the trigger wouldn't know whether it was over a loaded chamber, or an empty one. Using that method made flinching simply go away. Pardon another gun analogy, its a long shot, but it just might work for this too.
 
lisakuney - My sleep is definitely different now, too. The materials I got with my order from Skip's Pharmacy say that sleep disturbance is the most common side effect from LDN. I didn't sleep much at all the first three nights, but then I started sleeping deeply again. What I now have is restful and deep, but it's still very different from how I slept before. Now, it feels as if I am dreaming from the moment I fall asleep all the way until the moment I wake up. I must fall immediately into REM sleep instead of having the normal sleep cycle. Yesterday I went for a hike (this was the first hike I have been on since getting really sick, and it was a short one), and in the evening, I was tired enough to fall asleep a number of times while waiting for my husband to wash his face and brush his teeth. Each time I was dreaming when I suddenly woke up due to a noise he made. They are dreams that seem like real life, too. I don't dream crazy impossible things anymore, I dream everyday dreams like I'm shopping for groceries at Target or I'm talking with a friend.

It's not necessarily a bad thing, but psychologically, sometimes I feel slightly less rested because I feel as if I was doing things the whole time I was asleep instead of being turned off to reboot like a machine.

We don't know for sure how this drug will interact with each person's physiology, but we DO know that it does affect sleep patterns. Even though it's a very low dose, I wouldn't be surprised if it were affecting your sleep. Hopefully the more severe disturbance (feeling as if you aren't sleeping much at all) resolves quickly. It it possible that you feel like you aren't sleeping because you are dreaming so much?

Also, lisakuney, I know what you mean about a feeling of well-being! That was the first thing I noticed, and I noticed it the next morning. I didn't assume it was an actual side-effect because I figured it was mental instead of physical, but I really appreciated it nonetheless. Now I've begun to wonder if it wasn't an immediate change in neurotransmitter uptake. Ever since I began having trouble (that turned out to be Crohn's), my mood has been much more difficult to manage. Since beginning on LDN, I have found that my mood has been much more positive and hopeful.

Any of this could be a placebo effect, but I figure it still doesn't hurt to document it and share it with each other. The more of us experience it (without it being necessarily suggested that we will), the more likely it seems that it's a "real" side effect.

Take care and be healthy!
 
When I started LDN my sleep was not restful, woke up lots and was still tired in the morning. i only had one vivd dream,but now I also have been dreaming alot more, just regular dreams. Sometimes I do feel slightly less rested as well, perhaps the dreams are the reason. I definitely had a sense of well-being right away,didn't know if it was a side effect or just the excitement of starting the LDN. However I have been taking it for five months now and still find that I have that same positive feeling a lot of the time. Don't know if it is the placebo effect or not but certainly not a bad way to feel.
 
hi Wendy,

I took my son to a MD at a medical school here in Texas in 2006 who was treating a limited number of crohns patients with LDN, and he told me that it was his opinion that the "placebo effect" would probably be explained one day as an endorphin release similar to that which LDN triggers. He went on to explain that so often in trials as many as 30% of patients on placebo will show a positive response for this reason, in his opinion.

Ted
 

Kev

Senior Member
Hmmm, I wonder if anyone ever investigated the personality profiles of those who have benefited from the 'placebo effect'? I mean, people enroll in a study, they are told they may be either in the test group, given a trial drug, or in a control group, given a placebo, and that no one... (in a double blind study) will know directly which group they are in. (or, even if that is not spelled out.. tho in these days of full disclosure, doubtful.. they just 'know' the way it is supposed to work)..You know what I'm saying? Anyway... glass half empty Vs glass half full... group composed of optimists/pessimists, my ASSumption is the optimists would see the 50/50 chances as an opportunity, and it would be primarily these who would experience 'the effect'. Whereas the pessimists are expecting to fail, expecting to be in the control group, and aren't expecting things to get better. My point? (did I have one of those???).. If we hope for the best versus fear for the worst, it actually may improve our chances... either for ourselves, or for those around us. Optimism is contagious... (so is pessimism, but why spread that?).
 
Kev I agree.

Besides your personal outlook there are long term studies in humans and apes that show your station in life affects death from all causes, the lower down the higher the death rate. Stress causes people to be less healthy and to die at a higher rate.

You can watch "stress portrait of a killer" which is available free online. The general premise is that when you are stressed your body secrets cortisol (the body's version of prednisone) to suppress your immune system, which is the biggest consumer of protein, so that all available protein can be shunted to the liver for conversion to glucose. The idea is that this stress response was important to our survival in the recent past, for example, so that you can escape the lion that is chasing you for the next few minutes, because living is more important than immunity at that moment.

So the deal is lots of things trigger a stress response, your boss does and it includes exercise too. Your body simply can't tell if your life is on the line or not, so it dumps cortisol anyway. The point at which this happens is 30 to 45 minutes into your exercise program. For the next four hours you will have significant immunosuppression, and your immune system won't be back to normal for 48 hours.

There are sports medicine centers at universities that are looking into how to prevent those frequent uppers respiratory infections that affect cyclists and others who exercise to extreme for this very reason.

It's really complicated and intertwined, people who say they are different, and a given drug or diet isn't working for them might have different stress profiles and maybe that is what is confounding their treatment?
 
Deteoj, are you saying that extreme exercise is good for you or bad? I find this interesting because Leah seems to flare when she exercises a lot.

Kevin, Leah has been on LDN for a year now doing great until a few months ago she started showing signs of a flare coming on. I'm wondering if our local pharmacy could be giving us pills that were compounded months ago? Do you know of any one that was on LDN successfully then out of the blue it quit working for them? I'm going to call them tomorrow but she hasn't been stressed out and all has been good. They use the same filler as skips but I didn't think to ask they about when they compound it until I saw you mention it earlier.

Also, she had a fecal calprotectin test last week, we were just informed the results are 17,000 I asked twice because I thought she meant 1700 at first. Now they want to start humira, I'm just sick over this she was doing so well on LDN. I've been looking on this forum everywhere and I never see anyone talking of a FC # being that high.

Help I'm stressing .....

Thanks
 
I'm sorry to hear you daughter is flaring. I've been reading the posts here for a while, as my 18 year old niece has just started LDN for Crohn's. I found the post by Dekar on this forum really interesting; he provides a link to an interview with Dr Zagon. At about the 25 minute mark of the interview Dr Zagon mentions dosing changes when LDN stops working. It might be worth considering for your girl.

Hope she comes out of her flare very quickly.
 

Jmrogers4

Moderator
Jack just had a small flare after a year on LDN, his FC was no where near that. He went from 93 to 290. We treated with a 5 day burst of prednisone, added Pentasa and did entrenal nutrition for a week. Seems to have worked (knock on wood). He started eating food again on Tuesday.
But I can understand them want to be aggressive with treatment as most will tell you it's best to get inflammation down quickly so as to minimize scar tissue, I don't believe there is anything that can reverse that.
So number 1 goal would be to do whatever works to bring down inflammation and minimize damage.
I'm pretty vigilant about our LDN being compounded correctly and with fresh stuff yet we still experienced a flare and his labs have never matched what was seen inside. In fact his labs all came back normal. One of the nice things about LDN is you can always come back to it.
 
thanks jmrogers,

i have a call into our family prac who rxs the ldn, hopefully he can figure out why the ldn isnt working. the stomach flu has been going around school which im sure that didnt help matter. i did call the pharmacy, they are making it correctly and its not compounded until i pick it up so thats a good thing. i agree we have to get the inflammation under control. our family doc is easier to talk things thru, unfortunantely the GI tends to just go straight for the big stuff and disregards what LDN has done for her so far.

I just would like to add i love this forum, its so nice to be able to go to all of you out there with experience not only with crohns but with all the anxiety that goes with it.
 
I just spoke to Skip at Skip's pharmacy and he said there is no problem with continuing medical marijuana while taking LDN. They involve different systems in the body. My daughter is starting LDN tonight. She will start with 1.5 mg for a week and then up the dose? He is so knowledgable and helpful. I will post daughter's progress and wish us luck!
 

Kev

Senior Member
I don't see a problem with LDN in conjunction to medical marijuana. First off, it is low dose... taken at bedtime. Secondly, medical marijuana should be high in CBD, low in THC. And speaking of high, it is the THC that gives cannabis it's high.. whereas the CBD gives it the health benefits. I don't think the opoid blocking properties of such a low dose of Naltrexone should effect any 'residual' high from the relatively low amount of THC in the cannabis... But, even if it did, the purpose isn't to get high, it's to get better. Combining high CBD cannabis and LDN should get you better... whereas opting for high THC cannabis will only delude you into 'feeling' better. There IS a difference.
 
Vongoh,

How long were you on a paleo diet?

Diet as treatment for crohns has been effective according to the now deceased
dr. Lutz ( wrote the book, "life without bread", the English version I think back in the '60s ) in that book he documented,with a nice line graph, that it took his crohns patient upto 2 years to go into remission on a low carb diet. the colitis patients took as long as eight years. His treatment might include some gold salts for a time but the low card diet was the focus of his treatment.

One little nice feature of low carb is that migraines go away, for those that I have known using a low carb diet. Lutz explains why in his book, women start having migraines when they go through puberty and then lose them when they go into menopause, unless they use hormone replacement therapy, in which case they will continue. But men will have migraines until they are fairly old. Its all about too much anabolic hormone in the form of insulin combined with the anabolic hormones estrogen and testosterone which kick in during puberty. If you don't think diet can mess with reproductive hormones then you have never feed chickens.
 
Sorry I'm new to this forum. Would really like to know about medicinal cannabis and also LDN. It's for my daughter. Searchinghealth, how old is your daughter. My daughter is 15 and has crohn's disease.
 
My daughter, who is 20, started LDN 3 nights ago. Started at 1,5 for 2 nights and upped dose to 3 mg the 3rd night. She doesn't seem to be bothered by vivid dreams so much. She complains about feeling tired today and this could be a result of the pred tapering. She is at 10 mg. and lowering by 1mg. Every week. My guestion is should she stay at 10 for a few weeks and hope the LDN does the good thing, or continue to lower?
After some thought I think we will try not to use CBD MM lozenges while she is just starting LDN. Here in Ca it is legal to use MM but we will wait until see some results from LDN.
She has a GI appointment in 3weeks and I am hoping she is still feeling well than. We got the LDN from GP and I know GI will not approve. She wants her on Remicade after the pred tapering. We just tested her Sed rate which was normal but CPF was 200 before staring LDN.
 

Kev

Senior Member
I wouldn't expect fast results on LDN, especially at below 4.5mg. 2 months maybe, but in a few weeks??? Now, with the 10mg of pred, that might make a difference. I don't know. It is common for people to get worse before they get better on LDN. So, at the GI appointment, she may be in the midst of a 'worse' phase. Could be very bad timing.
 
After several weeks of terrible sleep, I have changed to morning dosing. What a difference it makes. Slept good the last 2 nights. Did notice nausea during the day, but not unexpected.
 
Lisakuney, keep us posted on this change in routine. Skip told me on the phone that it works at night during REM cycle sleep. I wonder why it effected the quality of your sleep and also if it is still works as well taking during daytime?
 

Kev

Senior Member
I echo the sentiments. The 'experts' say it has to be taken before going to sleep. Now, I always have... so I can't argue that taking it at other times won't work (for sure) but I don't know how much of a risk you're taking by changing the timetable. Loss of sleep is not to be taken lightly.... BUT if it is the only way this particular drug will work... then it becomes a big decision. I mean, if you already had proof positive it was working, even going to work... then experimenting with when you take it is one thing. But if you have no clear indications it is working yet... then this may not be the best time to change up.
 
I would agree that it is better to persevere through the sleep disturbance. I would take the problem with sleeping as a good sign, that at least something is being affected by the LDN. Hopefully a first sign that it is working.
 
Where can I find a list of doctors that will prescribe LDN. We live in central California, Los Angeles area is a lot closer than Northern Cal.
 
Jill smith wrote in their phase 2 trials that patients who had sleep disturbances that did not go away were switched to morning dosing, and the LDN still worked, worked being a relative term.
What I have not read yet is do they know if it was better at night or in the day. I would guess, my guess, is that taking LDN on a full stomach or too close to breakfast or even the evening meal or late night snack might interfere with the rate of absorption and thus the total blockage of the opioid receptors, since the filler choices for LDN are reported to be critical, like not using calcium, I would follow the same spacing recommended any drug known to be affected by calcium, which would include cheese, and milk.
 
inanitsch
If you go to the top of the page and click on the Doctor Directory it will give you a list of doctors that people have posted that will prescribe LDN.
Hope you can find one in your area
 
question about the Doctor Directory, are these the docs who will prescribe LDN, our doc happens to be on the list, but this treatment was never mentioned.
 

Jmrogers4

Moderator
No they are just doctors that forum users have placed on here, not necessarily ones that would prescribe LDN. There was somebody that had a list I will see if I can find who that was and tag them :)
 
thank you! we are kind of on pins and needles here. My daughter has a very inflammed ileum, she is tapering of prednisone, and 2 antibiotics. She was supposed to start Humira again, but since we feel it made her worse not better. We decided not to take it, so our doc is unaware of that. We started taking cannabis extract a week or so ago, but we aren't seeing any results. We may even try a the liquid diet. Any advice on enteral nutrition.
 
We started taking cannabis extract a week or so ago, but we aren't seeing any results.
The type, quality and dosing of the cannabis extract is essential. They also vary all over the map at this point, there are no agreed upon standards.

Theories that say only CBD is beneficial for IBD are mistaken: studies show that *both* CDB and THC have beneficial effects and anecdotal experience so far says both in their most natural raw state along with the other supporting compounds are necessary to get the full effects.

Some people have problems with the psychoactive effect of the THC, some don't at all. Apparently most people find that after a week or two on high quality oil they develop a tolerance and are able to have a normal productive life without impairment. I do.

We may even try a the liquid diet. Any advice on enteral nutrition.
I use product called Absorb Plus http://absorbplus.com/. Its formulated especially for IBD. Its a bit pricey but I've been using it for flare-ups for almost 2 years now and it is a godsend. Its quite tasty (chocolate, 2 types of vanilla and strawberry) - and if necessary you can completely eliminate solid foods for weeks at a time. I have and I dont know what I would have done if I didnt have it.
 

Jmrogers4

Moderator
Thanks vongoh, I just had a look at the absorbplus I may have to compare to my son's current drinks as it is believe it or not cheaper. When he is on them exclusive it is 8 cans a day and there are 24 cans in a case at $160/case. So roughly $160 every 3 days or about $1600 a month.
 
vongoh, thanks. We are using an extact 4-1 CBD-THC ratio, any advice on this treatment would be appreciated. I suppose I should join the mmj forum to see what other folks are using.
 
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