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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN & side effects...seeking advice


01-30-2010, 11:34 PM   #1
Ms Cordelia
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LDN & side effects...seeking advice

My husband has severe crohn's and has been pretty sick the last 6 years non-stop. He has tried every treatment out there with no results. He only had some relief with Remicade for 10 months about 5 years ago before it quit working. He started taking LDN 3 weeks ago. The first 2 weeks he took it, he got really sick with bloody D, acid reflux and nausea. We came to find out that the pharm had compounded the LDN with lactose and this is why he was doing so poorly. They were able to give us LDN mixed with acidopholus instead. He has now been taking that for a week. The bloody D is still there and he is pretty lethargic at this point. This is my question. He insists that the LDN is causing the bloody D and making him feel weird. He did not take it last night and said he had a few solid BM's this morning (they start coming around 4am). So now he's convinced that the LDN itself is creating the bad symptoms.

Did anyone else see increased bloody D when they began taking it? I am desperate to get him to remission and was convinced this was going to be it. There is nothing else. The problem is he wants to quit even though I keep telling him 3 weeks is not enough time to see if it will work. And I feel that the problem was the lactose he took for the last 2 weeks, not the LDN, but he is extremely stubborn. Any advice out there from the LDNers will be much appreciated.

By the way, he takes 4.5mg LDN. He seems to react to everything. If there is an off chance something will have side effects, he will get them. He is allergic to dairy, eggs & soy.

Last edited by Ms Cordelia; 01-30-2010 at 11:41 PM.
01-31-2010, 12:14 AM   #2
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i was taking LDN for a few months, last year. i fought hard to get it, because like your husband i am increasingly sensitive and/or allergic to more and more medicines and substances as i get older. i don't have the allergies your husband has, however.

i didn't get any gastro side effects whatsoever, the only negative effect i experienced lasted only the first week or so, and that was textbook reaction - vivid hallucinatory-type dreams, and weird spaced-out feelings if i didn't fall asleep very soon after taking it.

is your husband's LDN clear red liquid? this is the form in which mine was.. and although i knew the desired dose was 4.5, i started very low (i think it was 2mg), and inched up by .5mg every ten days or so until i reached 4.5mg.
01-31-2010, 12:26 AM   #3
D Bergy
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I have never heard of an allergy to LDN, but anything is possible.

I would speculate that the D is being caused indirectly by the LDN. Boosting the immune system is going to cause the body to purge most all of the bad bacteria and other pathogens. In our case, lots of those reside in the intestinal tract.

That is why it takes a while to get through the initial reactions. Once all of the bad stuff is largely gone, then the body can get back to closer to normal.

It probably is OK to take a break from it, and allow him to lose the D for a while. You do not want to get dehydrated either.

I had a similar reaction to Chlorine Dioxide when I was taking it. I did not have blood, but I took a break just because I could. In my case, I was already clear of most of the bacteria by the time I started taking LDN.
I do not think my case was nearly as bad as his, so responded faster.

I guess the thing to remember is there are reasons for what happens, but the reasons may not be what you think they are.

Try again in a week or when he is ready. I am pretty sure he will have to go through this purging process sooner or later, but it does not have to be all at one time.

I hope he can get through this. It is worth it if he starts to come around, and I know he does not have many options left.

Dan
01-31-2010, 01:02 AM   #4
Ms Cordelia
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dingbat said:
is your husband's LDN clear red liquid? this is the form in which mine was.. and although i knew the desired dose was 4.5, i started very low (i think it was 2mg), and inched up by .5mg every ten days or so until i reached 4.5mg.
No, it is not a liquid. It is in cellulose capsules, acidopholus & LDN (fast release). Funny, the Dr. originally prescribed a liquid to be mixed with distilled water. We thought that was strange and had it changed to capsules. The Dr. was new to LDN and the pharmacist advised against it since it would not keep as long as capsules.
01-31-2010, 05:37 PM   #5
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Ms Cordelia said:
No, it is not a liquid. It is in cellulose capsules, acidopholus & LDN (fast release). Funny, the Dr. originally prescribed a liquid to be mixed with distilled water. We thought that was strange and had it changed to capsules. The Dr. was new to LDN and the pharmacist advised against it since it would not keep as long as capsules.
the short shelf life is correct, regarding the liquid form. as mine was posted to me from out of town, it was imperitive that i received it and put it in the fridge within 3 days of it leaving the pharmacy, otherwise it would be no good. similarly, once it's been made up, it only keeps fresh, even refrigerated, for 30 days.. mostly this worked out ok, but once or twice due to postal problems, it was delayed and i had to reorder, losing the money i'd paid for the delayed bottle.

maybe it's worth considering having this form, the distilled water mix might suit your husband more than the capsules.
02-01-2010, 05:27 PM   #6
Ms Cordelia
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Thanks Dingbat. I'll look into it. At least out pharmacy is in town so we can just pick it up and not have to worry about the mail.

Strangely enough, he stopped taking it (3 days now) and things are getting better for him. He has been having solid BM's and this morning he had only 2 starting at 8ish (instead of the usual 4am). This is so strange. Maybe he can't tolerate LDN or maybe he needs a smaller dose to start. He is taking a break and we will try again in a week or 2.
02-01-2010, 06:17 PM   #7
DMS
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Hi Ms C, my son is on LDN and has been since August 09. He started at 1.5 mg/day and worked up to 4.5 mg over the course of a month and did not have any side effects other than some strange dreams when ever he upped his dose.
Has your husband been on a probiotic in the past? acidophilus might be the cause for the extra D, I know when my son started on probiotics he had about 3 weeks of D but after that things seemed to settle down - just another thought.
You might want to consider the cream LDN, some people have better luck with that.
Good luck - glad he's feeling a little better.
02-01-2010, 06:30 PM   #8
Ms Cordelia
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DMS said:
Hi Ms C, my son is on LDN and has been since August 09. He started at 1.5 mg/day and worked up to 4.5 mg over the course of a month and did not have any side effects other than some strange dreams when ever he upped his dose.
Has your husband been on a probiotic in the past? acidophilus might be the cause for the extra D, I know when my son started on probiotics he had about 3 weeks of D but after that things seemed to settle down - just another thought.
You might want to consider the cream LDN, some people have better luck with that.
Good luck - glad he's feeling a little better.
Yes, he has been taking daily probiotics for a while now (20 billion organisms / day - sometimes 50 billion) . I don't think it was the acidophilus, since he started feeling sick form day one (and they had mixed it with lactose at first).

I really think that maybe 4.5 mg was too high for him to start on. He is very sensitive and reacts to everything! We might start again at a lower dose...maybe 2mg and work our way up.

Thanks for the input!
02-02-2010, 11:30 AM   #9
caa
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Have you tried a gluten-free, sugar-free, and low carb diet? Have you read Breaking the Vicious Cycle by Elaine Gotshall? Its about the Specific Carbohydrate Diet for Crohn's and other related conditions.
02-03-2010, 10:52 AM   #10
Sue-2009
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Ms Cordelia...how is your hubby? Sue
02-03-2010, 04:14 PM   #11
Ms Cordelia
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He is doing so much better after stopping the ldn. I think we may need to start up again at a much lower dose and work our way up. Maybe 4.5 mg was to high to start with for hi.m. He's really sensative to meds.
02-03-2010, 07:18 PM   #12
Kev
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The issue your husband may be seeing/experiencing is something I went through when I first started LDN. The problem is that the whole LDN mentality is a total reversal of your typical treatments... no anti-biotics, no steroids, no biologics, no immuno suppressors... just altering the bodys immune response so that we can SLOWLY fight off the disease (and I don't consider it a remission, same way as I don't consider treating diabetes with insulin one) by our 'corrected' immune system. After I started (and stopped my other meds) I initially got much worse... and then very slowly got better. And stayed better.

To me, this drug has been a miracle... not a cure, but a sustainable control that allows me to live pretty good, AND without the dangling sword of the longterm, extremely serious side-effects/ramifications that traditional meds come with. It doesn't work for everyone (sad, but unfortunately true), but it offers so much in the pro column that I would advise anyone trying it to give it at least 3 months.
If by that time the magic hasn't happened, then you have to resort to another treatment. It's just that when one examines the pros N cons of all of them, LDN stands out.
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02-03-2010, 09:57 PM   #13
Reed
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I am currently taking LDN and initially thought I was on the mend. Into my sixth week, I am feeling more lousy than good again and I think that the dose of 5 mg is too high. I've read that some may be more tolerant at a lower level, so maybe Ms. Cordelia's husband just needs a lower dose. Do the capsules lose potency as the month progresses?
Reed
02-04-2010, 02:46 PM   #14
Ms Cordelia
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Thanks Kev & Reed for your input. It's good to know that this is a normal response to LDN. We were afraid it was some intolerance or something. We will try a lower dose and hope for the best!
02-04-2010, 03:55 PM   #15
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Yes, the shelf life of the capsules is limited... AND... if the pharmacy you're getting them from isn't cautious and/or trustworthy, the capsules they compounded for you may not be 'fresh'... I ran into that, but fortunately the pharmacy was a good one. I was running low, called for a refill, but they had run out of the gelatin forms (empty capsules)... Someone at the pharmacy recalled that there were still 10 from the last batch sitting around, and they were about to offer them to me BUT they realized they were almost past their shelf life.... So, instead, they switched capsules and made me a fresh batch with a different casing/capsule (it was cellulose instead of gelatin). Anyway, long story short, these pills do have a short shelf life, and a pharmacy of poor standards/ethics/practices MIGHT not be providing you with 'fresh' capsules.
03-07-2010, 05:09 PM   #16
Ms Cordelia
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Just an update: Scott has been off the LDN for over a month and started doing MMS again (6 drops every other night) and he is doing pretty well. He hasn't felt this good in years. We will be giving LDN another try starting with 2mg and working up to 4.5mg. I'll let you all know how that works out next week.
03-07-2010, 07:43 PM   #17
D Bergy
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That is great news, and I have been thinking about how tough it has been on you both, since Scott decided the change in treatment.

I know you two have been through a lot, and I hope you have it figured out with starting at a lower dose. MMS worked well for me. It brought me back to normal in a few weeks. Nothing else I tried came close to doing that.

Thank you for keeping us updated.

Dan
03-14-2010, 11:00 AM   #18
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I've been on LDN since June of 2009. Crohn's is doing very good. I finally was able to wean off the prednisone starting February 1st. Since, then I have been having joint pain. It seems to be getting worse. At first I thought it was from finally being off the pred. Now I am not sure. I see where joint pain can be a side effect of naltrexone but not sure a low dose would cause this unless there is an accumulative effect. Has anyone else had this? The pain is the worst in my ring finger on each hand in the middle knuckle. I feel it in other joints as well but not as bad as my fingers especially at night. Any thoughts would be appreciated.
03-14-2010, 02:17 PM   #19
D Bergy
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I think it is part of the worse before better effect that LDN often has.

Arthritis is caused by one or more strains of bacteria, and now your immune system is whacking at the invader causing inflammation in the joints. Part of the normal inflammation produced by a functioning immune system. You can counter this inflammation with anti-inflammatory supplements such as Ginger and Turmeric. With LDN, your immune system should be able to actually remove these pathogens, instead of just trying to.

Once your body is happy that it has eliminated most of the pathogens, your inflammation should go down, and your Arthritis should get better. LDN is used for treating Arthritis, so I am pretty confident that it will get better in the future. You would be a rare case, if it did not.

The steroid use may have made this a little worse than it would have been otherwise.

My take on it, but I could be wrong.

Dan
06-17-2010, 11:10 AM   #20
sunflower
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What is MMS? I did a search on that term, but the system could not find it.

Thanks!
06-17-2010, 01:02 PM   #21
D Bergy
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MMS has the full name of Miracle Mineral Solution or Miracle Mineral Supplement.

It actually is Sodium Chlorite, that is mixed with either Vinegar or Citric Acid which converts it to Chlorine Dioxide. Chlorine Dioxide is a disinfectant used to treat water and destroy pathogens.

Some people use it internally in small amounts to rid the body of acidic pathogens. It chemically reacts with acidic bacteria, viruses etc and oxidizes them.

It is not an approved treatment for anything, but there is a chemically identical product known as Dioxychlor, which is a weaker version of the same chemical.

I use MMS to keep bad bacteria down to a minimal level. Recently MMS has been banned in Canada and Australia, as it has not been approved as a drug.

MMS is the second most important treatment I have for keeping my Crohn's under control. Low Dose Naltrexone is my first most important treatment.

Dan
06-17-2010, 01:43 PM   #22
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Ah, interesting. I am new to the board so I have lots to learn. Thank you for the explanation!
06-17-2010, 10:47 PM   #23
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I tried LDN for about a week and had such horrible GI side effects that I had to stop taking it.
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06-17-2010, 11:57 PM   #24
DMS
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MMS may be banned in Canada, but you can still get it as a water purifier, google sodiumchloritepowder, alberta.
06-18-2010, 08:23 AM   #25
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Interesting!

Oxine is a clorine dioxide disenfectant that can be used with poultry. You can even use it as an inhalant to treat lung infections. I have been seriously considering getting some and using it as a nasal spray to treat my chronic sinus infections. I never thought about using it in my gut!

Here is a site about using it with poultry. Birds are notoriously sensitive to chemicals, so if birds can tolerate it, it isn't all bad.

shagbarkbantams.com/oxine

I realize that part of what you are talking about is the acidic portion, and this may not do the trick. But, in a pinch if people can't get the MMS, this might work...

I am going to try it!
06-18-2010, 01:03 PM   #26
D Bergy
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I just happened to find out about MMS just prior to my LDN prescription.

Actually, I was originally looking at it more as a Lyme Disease treatment than for Crohn's. I quickly realized it was exactly what I was looking for to treat Crohn's. You can kill bacteria by any number of methods, but to selectively kill bacteria, that is pretty tricky.

I wanted to kill off bad bacteria, and it just so happens that almost all bacteria that is acidic, is also not known to be beneficial to humans. I am sure there are exceptions to that rule, but it is still far better than removing all bacteria.

The MMS got rid of my flare completely, and then I went on LDN. Had I started LDN without the MMS treatment, I am pretty sure I would have had some negative events for weeks or months. The LDN then has to trigger the body to destroy much of the same bacteria that the MMS took care of already. That process is going to involve lots of inflammation, and other symptoms, until it is finished.

The MMS treatment itself will trigger the big D at some point. I stopped taking it for a couple of days to let it subside. You have to use it it carefully, as it can dehydrate a person as all of that dead bacteria is being removed from the intestinal tract. Once that phase is over, I could not hardly trigger the big D anymore. The offending bacteria was reduced to a point where the body no longer was responding to it.

It is a perfectly logical treatment, but you do have to use your good sense when using it. It is powerful, and you do not need to use a maximum dose to get results. I started to get noticeable results at seven to eight drops, and while I did go to the maximum of fifteen drops, I do not think that was necessary in retrospect. It will carry the extra oxygen molecules throughout the body, and oxidize any acidic bacteria, viruses that it comes into contact with, and have been carrying around with you.

Since we are all different in what pathogens we are harboring, you cannot accurately predict an individual response to it. In general, the sicker you are, the more reaction you are going to get from it. The good thing about that, is you definitely can tell it is working. The big D is guaranteed for someone with Crohn's. It will happen at some point, and it will also quit farther into treatment.

As with any powerful treatment, use it carefully and know if the reaction is too strong, you can quickly disable it with common vitamin C, such as in fortified Orange Juice.

Dan
01-04-2011, 12:57 AM   #27
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I have just put in my script for LDN but am very interested in this MMS also. Do you guys think it would be too much to start both at the same time? My symptoms are D and enough gas to fuel my own powerstation so I'm sure there is bacteria issues in the small intestines. Am starting the LDN at 2mg and plan to increase. I am currently on Humira, not sure how much longer I will stay on this as not getting much relief. I am 3 months post op where they removed 23cm of SI and 9 strictures. Thanks for your advice.
01-07-2013, 08:33 AM   #28
healthy
 
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hi
did anyone experience joint pain or a sore throat when starting LDN? not sure if this is from the LDN, getting off Pred or the flu. Anyone have anything similar?
01-07-2013, 09:59 PM   #29
Jmrogers4
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How long have you been on LDN? My son did flare a few weeks in but we got through that and have been feeling pretty good since. Could unfortunately be a combination of all 3
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