Anyone ever try LDN (Low Dose Naltrexone)?

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killerzoey

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Curious also. Someone suggested this to me on another forum. But I have not needed any thing else lately.

Dan Bergman
 
hey KZ... No, I haven't tried it. The only thing I knew about it prior to this was that it was used to treat addiction... and that it was so/so for drug addiction, but better for alcohol (simply because it stopped the cravings, AND it eliminated the 'buzz' that one gets from alcohol - this twofold approach really helped those addicted to alcohol). as for the link, i would be sceptical of anything that 'I' saw on it as the name itself gives me the first impression that these aren't arms length studies or reports. I wouldn't expect to see anything 'negative' on a website where the product touted is part of the website's name. 'I' would expect bias on their part. Maybe that's just the cynicism of someone from my generation, okay?
 
You all know how leery I am of the standard Crohn's drugs available currently.
But after looking into this a little I would be perfectly comfortable with this one if it proves to help with Crohn's disease. Small dosage, has already been tested for safety and has been used for quite a while. Side effects minimal, appears to possibly address the actual immunological defect that causes the damage instead of suppressing symptoms.

The doctors promoting this drug treatment have nothing to gain from it that I can see. The drug is generic therefore cheap. That will not speed up the clinical trials any but they are already doing some.

There is a study Crohn's patients can participate in at no cost. If I was having a tough time getting improvement I would sign up in a minute.

http://www.hmc.psu.edu/colorectal/research/naltrexone.htm

I really hope it works even half as good as they make it sound.

Dan Bergman
 
Thanks for the input. I did not know about the study. Maybe I will contact them. I am not experiencing horrible symptoms at the moment - just the joint pain. I am curious if it might help with this as well. I know it has been shown to help Rheumatoid Arthritis.

It is used a lot with MS patients, I've learned. I believe the idea is that it halts the disease progression. If it does that with Crohn's and other autoimmune diseases, I think that's wonderful. One of the things that scares me about Crohn's is that it seems like symptoms and severity don't necessarily go hand in hand. So while a person might feel fine, damage can be progressing, only to be discovered later in a bad way. I suppose that the goal of all of the drugs is to slow the damage, though.

One drawback I just learned that should have been obvious to me is that while on the medication you cannot use narcotic pain relief as the opioid receptors have been blocked by the Naltrexone. Even at this low dose I believe you need to clear your system of the Naltrexone for a few days before, say, having surgery. So one thing I would need to know is what sort of a situation I might be putting myself in should I need emergency surgery or find myself in a lot of pain.

But that's the only thing I've found so far that makes me hesitate. It really does sound like something one might as well try if they're curious and have a willing GI.
 
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Just updated w/ user reviews from Revolution Health (see original post)
 
hmmmm, a 12 wk study on 17 patients... with a 67% remission rate. (atho a higher number presented improvement).. and 7 of the 17 suffered some sleep disorder as a side effect. From those initial figures, if it were offered to me as a treatment, then I would probably go for it... hey, the sucess rate seems equal to the other medicines I have seen touted. And it is low dose. I wonder how many docs would feel secure in offering it to their patients (for Crohn's) simply because the supporting study is sooo preliminary... I mean, it's only a 12 wk study, and the number of subjects is a bit low.
 
I have lots of questions about this treatment that I would want some answers to before I would use it.

One question would be, do you have to take it regularly or just when you flare up?

I am assuming you just take it regularly but am not sure.

While there is not much data on long term use, it appears the medication just suppresses Serotonin for a short time and then your body takes over from there.
I am speculating big time but I would think that by just poking at your Serotonin level temporarily it may not cause the resistance that is so common with other drugs. If I understand it correctly the temporary suppression causes an inverse increase in Serotonin which makes me wonder if it would have an effect on depression also. I like the idea that you are basically only under the major effect for about three hour instead of constantly like other drugs. I would hope this would not mess with the chemistry of the body as much.

Lots of questions, but it looks better to me than the alternatives at first glance. At least until more research is done and there is more data to go on.

I think I will make an appointment with my Gastro and see how receptive he would be to prescribing this. I also have other questions for him and I may as well throw him this curve ball as well. He never quite knows what I will come up with and I hate to disappoint him with the standard questions.

I hope Old Hat is digging into this. He seems to find things that I miss.

Best Regards

Dan Bergman
 
From what I read you have to take LDN every day. That's the only question I felt I could answer in relative certainty.

I'm going to speak with my doctor about giving this a try.

One thing I learned on a board run by a woman named Brenda, which mostly deals with MS patients, is that LDN is best ordered via a compounding pharmacy, and that probably the safest filler to have them use is acidophilous. The board recommends certain pharmacies. The pharmacy info on this board and general "gist of things" is great.

http://ldn.proboards3.com/index.cgi?board=forum

You can see I've started a thread entitled "How Do I Start?" in which I ask about pain killers and surgery while on LDN.
 
I put the call in to my Gastro to find out his opinion on LDN. I also asked if he would be willing to prescribe it to me, and he already knows that I am not willing to take Imuran at this point. He likely is not too pleased that I am self treating although his letter says as long as I know the risks that is my right.

Since I talked to a nurse, I have no feedback yet on the issue. I am very interested in what he has to say about it, so I am waiting for a call.

Best Regards

Dan Bergman
 
I'll be interested to hear what your GI says, too. If he does not want to prescribe it for some reason, there are doctors who will do phone consultations. There seems to be a fairly strong pro-LDN grass roots movement.

I plan on asking my GI her opinion, too, when she calls me with some test results.
 
I have not heard back from my Gastro yet, but I will post when I do. If he does not want to prescribe me the LDN he should have some good reasons, I hope.
If he does not I have some other physicians in mind who would be more open to such a prescription. To me it is a no brainer from what I know now, but he may have more info available that I am not aware of.

I sure am glad you brought this to my attention again. I never investigated the first time. If it works, I see no problems with this treatment. It is better than my self treatment in that it is not just preventing symptoms. It is the best thing I have seen so far. I just hope the information is fairly accurate.

Another study for LDN.

http://westhillsgiresearch.com/currentclinicaltrials.htm

Best Regards

Dan Bergman
 
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I heard back from the Gastro's nurse today. They do not prescribe LDN for Crohn's patients. Apparently the lack of approval for Crohn's is the stumbling block for them along with the lack of larger studies. I guess I understand their position to a point, but I just do not see the danger in trying it especially since I would not be stopping any current medications.

The nurse repeated the benefits of Imuran and how it depresses the immune system just enough to reduce the damaging immune response from Crohn's.

I pointed out that LDN increases the immune response and accomplishes the same result with little or no side effects. She asked what I intended to do regarding my request. I told her it is my doctors opinion that Imuran is the best choice, yet there are other people getting prescribed LDN by their doctor.
Since there apparently is only a matter of opinion between treatments, I would be seeking a second opinion on the matter.

So basically, I am back to square one. Oh well, the doctor did a good job of diagnosing me so I can't carp about that. He certainly has his reasons, but my reasons seem to make more sense to me. Until someone can give me a more compelling arguement as to why Imuran is superior to LDN I will continue to try to get a prescription or get it some other way. I am glad I am not suffering at this point or I might be a little more ticked off about the situation.

If anyone else is trying to get a prescription, I hope you have better luck.

Dan Bergman
 
I think both reasons. The studies are taking place but without the big dollars of the pharmaceutical companies behind it the studies can only take place as money is found to do them. This is why cheap treatments get over looked since they really have a small chance of getting the millions together to proof safety and effectiveness. I do not think this is an accidental situation.

A real fundamental flaw in the system. At least for the end user.

Dan Bergman
 
D Bergy said:
I think both reasons. The studies are taking place but without the big dollars of the pharmaceutical companies behind it the studies can only take place as money is found to do them. This is why cheap treatments get over looked since they really have a small chance of getting the millions together to proof safety and effectiveness. I do not think this is an accidental situation.

A real fundamental flaw in the system. At least for the end user.

Dan Bergman
Click to expand...

No doubt about it. Thanks for looking up all the info.
 
The drug has been around soooo long, that it's gone generic. Meaning the original pharceutical giant behind it's development wouldn't benefit from paying for the trials. However, even tho it's not FDA approved for these new treatments, it still is LEGAL & ETHICAL for a doctor to prescribe it... BUT doing so would likely place the doctor in a position of being totally un-protected IF there were adverse repercussions. I think it would give the insurance company providing malpractice coverage an automatic 'out'. Can you see the dilemma from a doctors perspective? Especially in the lawsuit happy environment that we all live in now...


Just my two cents worth. I'm off to see my GI, see if I can persuade her to trial me on it...
 
I hope you have better luck Kev. If you do get to try it out, I hope it puts an end to your roller coaster ride.

Dan Bergman
 
I agree that the reason that the pharmaceutical companies don't go through the necessary FDA approval for the use of existing cheap drugs for new diseases is that these studies are enormously expensive and there is little money to be made on these cheap drugs.

I asked my GI if she had ever prescribed LDN for Crohn's and she did not know what that was. She only knew of Naltrexone for overdoses and said that it generally made people feel "crummy". It would! But that is for its standard use of opioid withdrawal, at the standard dose. I think it's a little concerning that something that shows such promise, the study of which was recently published in the American Journal of Gastroenterology, should not even be a blip on the radar screen of my GI. But as Kev pointed out the doctors do have to cover their arses, so they aren't necessarily on the lookout for fringe alternative treatments, however effective they may be. My GI had actually never heard of the Specific Carb. Diet, either.

Penn State has received funding to do another LDN-Crohn's study. "As a result, Dr. Smith received a substantial NIH grant which is funding a definitive Phase II placebo-controlled clinical trial." http://live.psu.edu/story/22102 http://www.lowdosenaltrexone.org/ldn_trials.htm
Penn State Phase II Trial of LDN Therapy for Crohn’s Disease http://www.skipspharmacy.com/sppress/?p=75

My GI did ask whether the Penn State study had been double-blind. It had not, and the implication was that the result may have been due to the placebo effect. Point well taken, for sure. However, the empirical data regarding the efficacy of the drug with MS makes me lean toward the idea that the drug may indeed be effective. I'm really looking forward to the Phase II study to settle this.

I e-mailed my GI some more info and have not heard back from her. I am going to assume from her reaction that she would not want to try this drug on me.

However, I have a friend who is a doctor who has worked with HIV patients for years. They use LDN for HIV and hopefully he is familiar with it and may write me a script. If not, there is one more doctor here that I might try before resorting to online.

My feeling remains - hey - it's worth a try!
 
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Keep your fingers crossed. We discussed it at length.. Here's the upshot. If I go into a tailspin, requiring either metho, remicade or humira (the possibility of that did come up today, pre discussing the LDN) then as it stands now, she will look into the LDN and IF I agree to take it as a 'test case', absolving her of the potential liabilities then she would agree to prescribing it.. IF (big IF) she finds no contra-indications in those studies... so, if it passes her scrutiny, and I waive off and sign off on the liabilitie, its possible. At least a 60 - 90 day trial, with accompanying blood work and scoping (oh well, no pain, no gain). We also talked about the possibility of my originally having some form of Habba syndrome as the route cause of all of my difficulties. Problem is that, proving it would be extremely problematic at this stage, and even IF it did, knowing so wouldn't be benefiicial to my current situation. Did I tell you that I happen to have a really great doc here?
 
Many doctors rely on Pharma reps to keep them up to date on the drug front. I am sure they do not bring up LDN. Doctors are very busy and quite often are not up to date on new treatments.

I really do not think this is a very good excuse since we pay them for expertise and knowledge beyond our own on diseases.

It sounds like your doctor has not ruled it out anyway Kev. Sounds like you have a reasonable doctor who uses a degree of common sense.

I am just sick of this hoop jumping I am continuously going through. Not so much with my problem but various medical issues that I have in my family. I have contacted a couple of doctors already, and if that does not work I will have to do it in a less than legal manner.
But I do not think it will come to that.

I actually know of a guy near the Canadian border who compounds his own LDN since he could not get a prescription. That does not appeal to me as I am not a pharmacist, but it shows what people are driven to in trying to help them selves.
It just is not right.

Dan Bergman
 
Welll, essentially if one had a way to take a 50 Mg Naltrexone pill, grind it down in a mortar/pestle, then measure it accurately... so you could seperate it into 3 or 4.5 mg doses... you could simply drop that lower dose mixture into a glass of water, taken at bed time. Really accurate scales would work, but a nice clean, never before used gunpowder trickler would be better... far more accurate, easily repeatable. Wish I'd kept my bullet loading equipment...
 
I have already found two doctors that will prescribe LDN with the proper documentation diagnosing the condition. Non are local to me but they can do a telephone consult. So this is the route I am taking.

I was kind of looking forward to having to do it illegally, but I guess that is just the non-conformist in me coming through. I liked the reloading idea and I know someone with a super sensitive scale that I could use. Oh well, I am sure there will be other opportunities to break the rules.

I also got a couple of people who have had success using LDN for Hidradenitis Supurrativa. My son has that disease and there is no good treatment for it and it is considered incurable. That is very exciting to me since it could possibly make his life normal. Not much evidence, but you cannot get a placebo effect for HS.

Dan Bergman
 
Kev, Bingo - that's what some people do. Check out this link I just ran across, which has info on both how to prepare LDN using 50mg Naltrexone (brand name "ReVia" tablets, as well as how to order this stuff online with a script provided by the online store:

http://ldn.proboards3.com/index.cgi?board=links&action=display&thread=1105152047&page=1

I would do this right now except that one of the fillers, Lactose, is illegal on the Specific Carbohydrate Diet.

People have said online that the filler makes a difference for some.

http://www.gazorpa.com/LDNFillers.html

Ideally I will get LDN from Skip's Pharmacy online. They can use acidophilous as a filler. Maybe you will want to keep this in mind, Dan.

I figure you can't get any better filler than acidophilous! It would be so nice if it worked for your son, too.

If I get an LDN script I"m going to go for 1.5 mg amounts for easy up-stepping of doses from 1.5 to 4.5
 
Wellllll, the lactose fillers would be a problem for me.. the other thing to watch out for is whether the original Naltrexone was timed release or slow release.. they won't work

As for incremental dosage, I've read that anything below 1.7 mg is ineffective, either 3 or 4.5 mg dosages are recommended... I can see the point of going the 1.5 route if you wanted to double or triple up, at least to start off. But once I hit upon the right dosage (be it 3 or 4.5) then that's pretty much what I'd stick with.

You know, the 'funny' thing is that recently I stated on a thread here that I wouldn't go jumping on the band wagon of the next 'miracle' cure down the pipe, yet here I am. funny (not ha ha funny) what this disease will do to your perspective.. Anyway, I'm probably weeks away from being able to try the LDN, so I wish everyone/anyone who tries it before me all of the best, you lab rats you ;-)
 
I will jump on the bandwagon whenever there is little or no risk involved. Of course there is always the risk it will not work.

Skips Pharmacy seems to be a popular pharmacy among many of the users.

I would be worried about getting a fake drug if ordering from some sketchy overseas pharmacy. Some very mainstream drugs in the U.S. have been found to be Chinese counterfeit drugs. It is unlikely that anyone would counterfeit a cheap drug, since money is the only motive, so Naltrexone is probably pretty safe.

Since the drug is so cheap, and a person can get a prescription for Crohn's, I think it is best not to be a closet compounder. Even the pharmacies have difficulty getting the drug consistent from what I have read. I am sure the whole process could get you in trouble if someone wanted to bother with it. I am wondering if getting a scrip for Hidradenitis is going to be as easy since it has not been used much for that disease? I will know more next week.

Dan Bergman
 
I just found a wonderful site that discusses how to talk to your Dr. about LDN. It was written from a Multiple Sclerosis perspective but it would help for any applicable condition such as ours. I wish I'd read this before I'd inundated my Dr. with all those links via a-mail :(

http://www.gazorpa.com/PatientGuide.html
 
I may have found a Dr. to do a remote consult for $150. My script may be on the way soon! If the Dr. seems legit and it goes through, I'll share the details. The only thing is that she uses her own choice of pharmacy and they use Avicel as the filler. Avicel is an undigestable cellulose and I fear the fiber nature of it. We'll have to see. I wish they offered acidophiluls.
 
I have also found a doctor in the Chicago area who prescribes and uses LDN. I have requested that my medical records be sent to him. That may take a while but I will post when I have some more information.

I am not sure of the filler in the LDN but that is probably not much of an issue for me as long is it is not onions. I think the pharmacy name is "The Compounder" in Illinois
They are one of the pharmacies listed on the LDN site as a good one to use.

I am interested in your results killerzoey, since I have so little in the way of symptoms. But I do have to take my supplements or I get the big D rather quickly.

Dan Bergman
 
That's great you found a doctor, Dan, and that the process has begun. This doctor I found (Dr Jaqueline McCandless) just had me fill out a 3-page health questionnaire. The transdermal cream she helped develop (fast absorbing, made w/ Emu oil) should be on its way soon, from The Compounding Pharmacy in Georgia. Dr. M said I could easily tinker with my dosage this way and find the amount that suits me best before ordering the capsules. Besidese the LDN User Group who first mentioned her, I've seen this doctor's name mentioned on the Yahoo LDN group a few times and it seems she enjoys a good reputation.

I'm getting very excited but don't know how well I'll be able to tell you if it's working as right now my symptoms are mostly joint pain. It will be very interesting if it helps that. My right hip in particular has been a steady problem for a month or so. Could be AS, I don't know. But AS was listed by Wikipedia as one of the diseases possibly treated by LDN so maybe I'll be very lucky. That is the only place I saw AS listed, though from what I'm gathering, many autoimmune issues are treatable this way.

This sure would beat the heck out of the pricey big gun drugs if it does work.

I am doing the pill cam on the 25th of this month which is great timing for a "before" assessment.

Here's to hope :)
 
My trans dermal LDN cream is on the way! Should be here Wednesday or Thursday of next week. I just have to be opioid pain killer free for 2 weeks before starting. This all happened more quickly than I thought it would. I would have dropped the meds sooner had I known Dr. McCandless would set me up so fast!
 
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I think she is doing a study of some kind on LDN, but I do not remember it being for Crohn's. There is a lot of grateful people that say a lot of good things about her.

Most people on the LDN site appear to have MS. It seems to help most of them, but there are some exceptions.
Not many Crohn's people post there. Looks like we will have to change that. I sure hope this is not a waste of time. I guess even if you are eliminating something that does not work, it is useful.

It seems that the LDN modulates the immune system as opposed to boosting it. I am not sure that completely jives what I have read about how the immune system works. It may be an oversimplification. But, however it works, I hope it works well.

The pain killer Darvacet and Acetaminophen seem to be one of the few pain drugs that will not be blocked by the LDN.

Good luck with the cream killerzoey. I am patiently waiting for the "combine" to move things along.

Dan Bergman
 
Hi Dan

Yeah, I hope it isn't a waste of time, too. It will be hard to know, perhaps, in the short term, as my symptoms are so mild right now, GI-wise. I figure if I continue to take Asacol to hedge my bet, I won't be doing any harm at the very least.

Where did you read that about Darvocet?

Thanks - Jamie
 
Off of the Yahoo LDN site.

I would check with a Pharmacist to make sure you can take both medications at the same time just to be safe.

Subject: Re: [lowdosenaltrexone] Re: What Not To Take With LDN....

Do not take Naltrexone with any of the following without first talking to your doctor:


• disulfiram (Antabuse);
• thioridazine (Mellaril);
• buprenorphine (Buprenex, Subutrex);
• codeine (Tylenol with Codeine, and other brand names);
• hydrocodone (Lorcet, Lortab, Vicodin, Vicoprofen, and other
brand names);
• hydromorphone (Dilaudid);
• levorphanol (Levo-Dromoran);
• meperidine (Demerol);
• methadone (Dolophine, Methadose);
• morphine (Kadian, MS Contin, MSIR, OMS, Roxanol, Oramorph SR,
and other brand names);
• oxycodone (M-Oxy, OxyContin, OxyIR, Roxicodone, Percocet,
Percodan, and other brand names);
• oxymorphone (Numorphan); or
• propoxyphene (Darvon, and other brand names).

· Novantrone

· Rebif

· Avonex

· Betaseron

· Tysabri

· Chemo's

I believe that steroids, short term, are ok with LDN.

Dr. Skip

As per Skip’s Compounding Pharmacy in Boca Raton, Florida “Darvocet” is one of the very few that You Can Take with LDN without it canceling out the LDN……


That last part was edited later since it was incorrect. Non of the above drugs will cancel out the LDN. The LDN will block the other listed drugs.

Dan Bergman
 
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Wow - thanks very much for that info.

I would be tempted to try it with the LDN, especially if the worst that would happen would be that the LDN would cancel out the effects of the Darvocet.

Of course, ideally, I would just feel so good I wouldn't need anything! Or perhaps Tylenol could cut it.

I wonder what is so different about Darvocet? Very interesting that it is singled out.
 
http://www.thisisms.com/article108.html

This is an interesting article on "This Is MS" regarding the National Multiple Sclerosis Society's negative response to LDN. Though long, it is a very interesting read, not only as it pertains to MS but to the medical community in general. It also contains some good explanations of how LDN works and a few interesting citations from studies.

The article falsely states that LDN is harmful by likening its use in MS to a lab study done using HIGH dose Naltrexone and animals induced with the animal model of MS. The result was a worsening of their condition. Of course, the problem is that HIGH dose Naltrexone acts in an entirely different way from LOW dose Naltrexone. High dose Naltrexone would block the opioid receptors 24/7, down-regulating the immune system. Low Dose Naltrexone has the opposite effect, by temporarily tricking the brain into thinking it's low on endorphines, thus producing more.

Reading stuff like this, as I'm finally really "getting" how LDN works, I am even more curious about opioid use. If opioids block these receptors for a long period of time (as does the high dose Naltrexone), could this have a negative effect on the progression of our disease? Is there perhaps anecdotal evidence of this, and is this perhaps why GIs are reluctant to prescribe narcotic pain relief? I am just thinking of the words of my GI, that pain pills "wreak havoc" on this disease. Just some random thoughts as I read on...
 
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Yes, the dosage or delivery method of the drug or substance used makes a huge different in the outcome of any study.

I have seen this done before in testing vitamin C in the treatment of cancer. Whether vitamin C has any effect on cancer or not I do not know. But those that claim it does have specific amounts they use inter venously. Now the study that determined that vitamin C has no effect on cancer used oral dosage with smaller amounts. The only thing that they really determined was that low oral dosage of vitamin C had no effect on cancer. No one ever proposed that it did in the first place. The conclusion that vitamin C has no effect on cancer is all most people would remember.

This is why I am suspicious of any study of unknown backing or by some organization that has an interest in the outcome. While a honest double blind study is about the best way to determine effectiveness, they are too often manipulated in a way to make the outcome predetermined.

I don't think opium based pain relievers block the opiod receptors. But I am not sure of that. They certainly affect your body's chemistry by triggering responses normally done by your own chemical producing capacity. I am sure there consequences of long term use. I would have to do some research to find out.

Thanks for the interesting link.

Dan Bergman
 
Has anyone here started taking LDN yet? If so, please keep us updated on how you're doing and method of delivery. Many thanks.
 
I am still patiently waiting for my medical records to be sent to the new doctor.

If I do not hear something after next week I am going to start rattling some cages.

I will post when I have it in hand. Jamie is probably going to get to it faster than me.

Dan Bergman
 
Looks like I'll be getting mine next Wednesday. Was supposed to be here this week but the pharmacy left a message Monday and I was so busy with guests I didn't get it. Turns out they had the expiration date wrong on my credit card so it didn't go through. That will be good timing, though, as that will be the 11th day w/o Vicodin. A good time to start.

Maybe I'll start a new thread then, with a blow-by-blow log of my reaction?

Dan, if it looks like it's taking too long I would suggest contacting Dr. McCandless. I heard she will be in Africa for a while but she seems to operate via the web ok so maybe it won't matter. I hope not, as I will need to let her know the dose that works for me so she can order the capsules from the pharmacy.

Turns out Dr. McCandless (who also somewhat pioneers LDN for autism) and her husband are about to embark in a trial for HIV patients in Mali. It seems that if it is introduced before the CD4 levels drop beyond a certain point, it can be used as the sole "HIV cocktail". I'm sure there are thousands of people in Africa who are within that bracket of disease progression who could benefit greatly, if only they could be identified and medicated. Dr. McCandless and her husband have put forth some of their own funds for the research trial. It's nice to know the doctor I happened across is such a humanitarian! http://www.lowdosenaltrexone.org/developing_nations.htm
 
She seems to genuinely care about people. That is a quality that is nice to have in a doctor. I originally was going to work with her but she is based in Hawaii and I wanted someone I could actually see if I had to. It would have been nice to say
"well got to see the doctor, see you when I get back to the airport" but I am not rich enough for that.

Chicago is not real close, but I could swing it. My doctor actually uses LDN also, which is a plus. I doubt he would use a drug that did not work.

I hope it works well for you. I am not having any problems right now so I can wait a while. I just always have this suspicion that it is slowly eating away at me without my knowledge.

I think the new thread would be a good idea. I always liked reading Kev's. It can help others to know what to expect if they try it. Not going to be the same for everyone, but I think everyone knows that.

Good Luck

Dan Bergman
 
Yeah, I share a lot of Dan's concerns. As a last resort, I might go that route, but I'm hoping my current GI will OK the LDN. If she doesn't, then I have a difficult choice to make. Like, I'm not sure how my GI would react if I opted to circumvent her call on this and go the remote treatment avenue. I had sort of a 'comedy of errors' which cost me my inside track with the best GI surgeon in the area. I went for a consult w another GI surgeon before my last op.. My original surgeon had no problem with it. Then I went to a 3rd GI, but it was to consult about my liver & pancreatic functions. Anyway, the surgeons head nurse/office manager heard of it, and got her nose out of joint. apparently she thought I was second guessing her bosses work... which wasn't the case. Anyway, since then, I have been 'persona non grata' in her little realm. Problem is, there's no work around... Shes' the boss!

I too, like Dan, get the suspicion that my disease is quietly eating away at me as I write this... those sneaky, underhanded lil buggers are just the type to do this. If my GI wont' go the LDN route, then I don't know if I could sit back and hope that my suspicions about my disease progression are all in my head (could be, enough fecal matter up there to host them).. Anyway, I may be seeing obstacles ahead that just aren't going to exist. At least I hope so. It would uncomplicate my life if it all fell into place. But so far, this disease just doesnt' seem to operate that way.

As for posted a day by day, blow by blow account of your experience with LDN, it's a great idea (why don't I ever get great ideas like that?). I truly believe that it's a service to the IBD community, in fact; I'll use stronger words. I think it's our duty to each other to share our experiences, to share our knowledge, to fight this disease

That's just my humble opinion...
 
I understand not wanting to circumvent the doctor. I am actually rather impulsively taking a bit of a risk doing this, as there are only 2 GI's on Maui that are well covered by my PPO (and did I mention they share an office?)

I am going to slowly work on my GI to see if she'll grant me the LDN prescription. In the mean time I will probably neglect to tell her about the prescription unless she wants to put me on an immunosuppressant drug. That will be an awkward moment, for sure. But she seems nice and understanding, even if not adventurous, so I'm thinking it's easier to beg forgiveness than wait for approval : )

If it doesn't help me, she'll never have to know I tried it.

Isn't it terrible, having to be so clandestine while trying to help ourselves, especially when there is sufficient science behind our reasons for wanting to try this route?
 
I guess they have to err on the cautious side. Their interest in the matter is not quite the same as the patient. I understand their position, and I just hope they understand mine.

I plan on sending my GI a letter explaining my reasons for not taking the Imuran and going with the LDN. I simply cannot fit all my reasoning into the 15minutes slot when I actually seen him. I have a wife with Lyme disease, which is officially not contagious, but can be in real life. All I would need is to acquire that on top of Crohn's. It seems to me that an immune suppressant would make that far easier.

I have a son with Hidradentitis Suppurativa, and I need to know if this works on Crohn's first hand, because there is a real possibility it could help him also.

Everyones situation is unique, and that situation has to fit the treatment. I am not just an obstinate patient, I have real reasons for my decisions. Since I have to live with the results, good or bad, I feel I should be able to decide what kind of risks I am willing to take. If that is out of line than I just do not understand why.
Having said that, I also will not blame the doctor for whatever happens. It becomes my responsibility now.


Dan Bergman
 
The way I see it, it's worth a try. It seems to me people seem to know rather quickly whether the LDN works for them. For you as well as me, however, this may be tricky since we both seem to have low symptoms at the moment. I am totally new to this and am on nothing at the moment, so have nothing to lose. I will look forward to learning of your progress, Dan.

I just started a new thread tracking my own progress, as I received my transdermal LDN today and applied my first dose (4.5 mg) a few hours ago. It may take a long time for me to truly know if it's helping, as if I do not experience new symptoms in the next period of time I will not know if the disease was naturally going into a period of remission or if I just started the LDN during a brief intermission.

I am quite sure the diet I am on is helping, as well. I see positive changes in my skin tone, weight, and the dark circles are all but gone. A few months ago I felt I had to wear makeup; now I can go without and barely see the difference. That's huge improvement and I take it as a sign that I am absorbing nutrients better and (possibly) not in allergic mode due to gut permeability.

I will be very happy if I can control this with diet and LDN.
 
I have the dark circles around the eyes also. Have had them my whole life, and when my fall hay fever kicks in they are worse. I have not been able to get rid of these no matter what I do. If I ever do, I will take it as a good sign of doing something right. I will cut back on my supplements to a normal amount, when i start taking LDN. I should not need the suppression action if it is working.

Still waiting for medical records to be transferred. I will start calling next week if I have heard nothing.

I have a son getting married this weekend so I will be busy for a while.

I will be watching your progress with great interest. Best of luck to you.

Dan Bergman
 
Here is a report from a child with Crohn's and the response to LDN. Of course this is just one report and nothing works for everyone.

Dan Bergman

This was posted by Dr. McCandless awhile back.

Update on a 3 year old with crohn's. Dr. McCandless has dealt with
children using
a special formulated transdermal LDN cream for children.

--- In [email protected], JAQUELYN MCCANDLESS
<JMcCandless@...> wrote:

Just wanted to give you a father's report on the tiny 3-yr old girl
who had 5 bloody stools a day on steroids and facing more serious
medications - after 2 months on LDN 3mg transdermally:

Her BMs are now reduced to 1/day(sometimes 2), Blood is not visible.
She is now completely tapered off Prednisone and Sulfasalazine and
is much less moodier and happy. Her appetite has also improved.

A happy report!

Dr. Jaquelyn McCandless
 
Well, just returned from my GI. Shes not only agreed to prescribe it for me, she put out feelers to the local pharmacies to see if any would compound it for me. She has a hot lead on one, and is waiting for their final yea or nay next week. If they do say nay, then theres a pharmacy in Toronto that she agreed to fax my presscription to. YAY. Now, do I have a great GI or what? Oh, happy days..
 
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I went the quasi-legal order a generic from India route to get some. Was actually pretty cheap. So I guess in the coming months we will have a variety of experiences people can read. And if something were to go wrong people can use me as a bad example since I'm doing this without a doctor and ordering from India.

I took my first bit yesterday and plan on 2 weeks from yesterday starting drinking hot chocolate as a test to see how my system is going. And if that goes well I plan on eating pizza the next day. So expect a report soon after Thanksgiving from me.

My email is [email protected] if I forget and anyone really wants to know how the LDN is going.
 
I think it takes a couple of months to really take effect.

Now you made me hungry for Pizza.

Hey Kev. Congratulations on having a great doctor and getting the LDN. You both know I want a full report on this, and I am sure others are interested as well.

Dan Bergman
 
Yeah guys. We are all interested in this new thing, LDN. So keep us posted on your results.... Maybe you guys in the US can push the CCFA to start some clinical trials on LDN, and maybe get it approved by FDA further on, so doctors would not be hesitant to prescribe it.......
 
That's great Kev! I look forward to your journal when you start taking it.

I see my GI next Monday and may ask him about it then. Otherwise, the place in India is the same online place I was looking at.
 
Well, to each their own. I knew that online pharmacys that supplied without a Dr prescription existed, just wasn't too comfortable ordering something that isn't an off the shelf drug. I mean, this particular strength of Naltrexone has to be made from literally scratch.. either Naltrexone in powder form or from the 50 mg pills. I hope the online sourced pills work, and that there are no additional risk factors involved, OK. I mean, even for me, there is some additional risk if a local pharmacy agrees to compound them Vs me ordering them long distance from Toronto, Ont.. all it would take for them to invalidate this trial is if they used Naltrexone SR out of ignorance. The Toronto pharmacy is experienced in compounding Naltrexone, whereas a 'newbie' may be prone to screwing it up.
 
You're right Kev.

Abstractdonut,

If it's the same place, the ReVia pills are 50mg and it needs to be dissolved. Here are some instructions I found on how to do this.

Liquid LDN: Acquire some ml measuring equipment from the baby section of a Drug Store and a small bottle with a mess-on cap. Put 50ml of water (distilled is best) and one 50mg "ReVia" Naltrexone tablet in the small bottle and let it dissolve with a little time and shaking. Now each ml of water in that small bottle contains 1 mg of Naltrexone. At bedtime shake the bottle, take a desired dose (no more than 4.5ml), chase it down with some water and store the small bottle in the refrigerator. Some people have reported splitting the tablet in half and dissolving it in 25ml of water to assure freshness every week. Use Stevia sweetener from healthfood store to sweeten for taste.

 
Yeah it doesn't taste to great but I normally drop the 4.5ml into more water then drink it all.

On a side note if I can't eat normally and have to continue with the SCD I do not see the point of this drug. The SCD is just too hard. When I'm desperate I use it, when I am feeling okay I start thinking about other foods.

And the study doesn't really mention what kind of diet these people were on. I would think that they probably had a great variance in their diets, which means hopefully even if I eat some pizza I will continue to remission.
 
Yeah, that's why, altho the initial read of the SCD was quite interesting, I decided it wasn't for me. first, I knew that even I couldn't hack that diet for very long, AND in dealing with this disease, I wanted to get back to a 'normal' life.. not spend the rest of my days living a life that even a monk would be hard pressed to continue. My understanding of the drug tests were that 17 people were trialed, and that their diet was not mandated. Now, the LDN sites talk about diet, and other factors, like candida (sp?)... but I'm hoping that the LDN alone will work for me... If it doesn't, then I'll probably continue it (once started) and try to get some A/B's to take care of candida (if I have that complication).. But if it boils down to taking LDN and existing on the SCD to make this work, its not the solution for me. At least not yet. In fact, if a combo of LDN and SCD is required to make this work, then I'd rather go for a surgical solution... I know that may not make a lot of sense, seeing as how I detest the thought of that surgery... but I know my limitations, and more importantly, my expectations of a minimal 'quality of life' that I'm prepared to accept in dealing with this disease
 
Well its been a little more than 2 weeks with me on it. It has not healed me yet though.

I have been bad and experimenting with my diet almost as soon as I started it. Some stuff went alright other stuff caused me some trouble. I realize now it may have paid off to start slower.

Also on the weird note I have gotten pain in spots which I do not normally get pain, and weird sensations that I do not normally get. Oh well, I will continue to keep people informed.
 
My very poorly informed take on the LDN treatment is that it stops the viscious cycle of the immuno knee jerk response that causes IBD. That should allow the intestinal system to slowly revert to near normal condition. The healing process, without all the inflamation from the over production of white cells, and of course the good bacteria being mistaken for bad guys, is a slow, non drug accelerated process. Myself, I'm not expecting significant improvement for the first few weeks... I'm hoping that by week 6 - 8, I should be much improved. But I'm not playing with fire... I'm sticking to my diet and my anti-inflamatories.
If it doesn't work by weeks 12 - 14, then i'll start sweating big time..
 
Wish I was that patient, though mainly back on the SCD I have been eating a poptart a day and that does seem to get through the system fine.

I ate a hotpocked yesterday though and it caused a really mean cramp or two. Not sure if it was the concentrated fiber content or the pepperoni in it, which can sometimes be stringy.
 
Guess it depends on your definition of patient. I can go 14 weeks, even double, if it will fix this. Don't know if I could manage a diet one has to maintain for 3 years.
 

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