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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Low Dose Naltrexone (LDN) Support Group


 
09-19-2013, 02:58 PM   #181
Searchingforhealth
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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!
09-21-2013, 10:18 AM   #182
Kev
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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.
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-21-2013, 04:11 PM   #183
Deteoj
 
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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.
09-21-2013, 04:28 PM   #184
inanitsch
 
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I'd like to know more about this.
09-21-2013, 04:33 PM   #185
inanitsch
 
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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.
09-22-2013, 01:57 PM   #186
Searchingforhealth
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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.
09-22-2013, 02:28 PM   #187
Kev
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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.
09-23-2013, 08:28 AM   #188
lisakuney
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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.
09-23-2013, 11:17 AM   #189
Searchingforhealth
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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?
09-23-2013, 04:42 PM   #190
Kev
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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.
09-23-2013, 05:52 PM   #191
Wendy M
 
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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.
09-23-2013, 09:48 PM   #192
inanitsch
 
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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.
09-24-2013, 05:51 AM   #193
Deteoj
 
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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.
09-24-2013, 09:25 AM   #194
Wendy M
 
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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
09-24-2013, 12:43 PM   #195
inanitsch
 
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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.
09-24-2013, 12:46 PM   #196
Jmrogers4
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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
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-24-2013, 01:34 PM   #197
inanitsch
 
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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.
09-24-2013, 03:39 PM   #198
vongoh
 
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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.
09-24-2013, 03:49 PM   #199
Jmrogers4
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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.
09-24-2013, 03:51 PM   #200
inanitsch
 
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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.
09-24-2013, 04:15 PM   #201
vongoh
 
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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.
Wow! I tub of Absorb Plus is ~$60.00. Assuming a 100% enteric diet - only Absorb Plus and supplements (Omega-3 or other oils to boost the caloric intake and anti-inflammatory action) - @ 4 shakes a day a tub lasts me about 3 days.

So about $120.00 a week x 4 = $480.00 per month means about $500 a mo. give or take (extra tubs, shipping etc). The great thing about it is that, when I start going into remission and adding solid food - I start with mainly broth, soups, eggs and other soft protein / mineral sources - you can taper off using it and leave the rest for reserve.

At the very least I think you should try some, ask him what flavors he likes - better to get all four flavors if you can, cause trust me: they taste really good but after a few weeks of just that, any flavoring can get pretty old lol. He's going to want the variety.
09-24-2013, 04:18 PM   #202
vongoh
 
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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.
Sure - I am using 1:1 ratio and - from my limited experience with it - it works great. I don't want to go too off topic in this thread though, this is about LDN.
09-25-2013, 06:07 PM   #203
inanitsch
 
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We have an appointment at the Whitaker Wellness Institute in Newport Beach on Monday. Mucho expensive, but I will do everything possible to help my kid get better. Thanks for your help.
09-27-2013, 07:56 PM   #204
Daybreak86
 
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HI Everyone..looking for an LDN Dr. in the Southeastern Michigan area. Any help would be greatly appreciated
09-28-2013, 04:48 PM   #205
Deteoj
 
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I found a willing prescribing doctor in 2006 (in austin, tx) whose practice was Chelation therapy. Search for a chelation doctor at abcmt.org. I sent the doctor what I could find on LDN and his nurse called me back and said he was willing to prescribe it, he himself uses it now to avoid the allergy issues that he had. The deal was that I had pay out of pocket for visits and he does not deal with insurance justifications for LDN.

I also had to know the dosing and filler that I wanted. Expect no help from this type doctor if there are complications. Also, if you tell your GI that you are on LDN, then his liability insurance policy probably tells him that he will have to drop you as a patient.

Back in 2006 there were no published studies, but now there are some phase II trials to show a potential doctor.
09-29-2013, 06:49 AM   #206
JoyceF
 
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Hi Daybreak, I have a list of "LDN friendly" docs and I do have some in Michigan. either pm me or e-mail me at [email protected] and I'll send you what I have. I am not sure where any of these locations are in the state of Michigan but perhaps there will be one near you.
09-30-2013, 06:07 AM   #207
isabelle
 
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Hello All, I am interested in starting LDN. I found a doc who will prescribe. I'm also on Cimzia, which, so far, isn't working but MIGHT start working in another week or two (I've only been on it for 3 and 1/2 weeks). Trouble is, I'm also on 40 mgs of Prednisone and when I taper off even a little, I get very, very sick. I know I can't start the LDN until I'm on 10 mgs of Prednisone or less, so I'm kind of stuck. I can't start the LDN until my flare calms down, but nothing I've tried has worked. Has anyone else dealt with this? Any thoughts/advice?

Many thanks,

Isabelle
09-30-2013, 09:54 AM   #208
Jmrogers4
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According to my sons GI you can do LDN while on more then 10mg of Pred. According to him the 10mg was for the study as it is not really a theraputic dose anymore at that amount so would not interfer with study results. It is more a don't know which one is doing the job.
My son was also just on a 5 day pred blast for a current flare, his GI feels that the LDN has worked so well for him we just need to get things under control again so the LDN can keep him there at least that is what we are hoping for.
09-30-2013, 04:31 PM   #209
Kev
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I think, if you have just started Cimzia, you should give it time before making any changes. When your doctor prescribed it, did he/she give you an estimated timeframe for it to show results? My wild guess (I'm not a doctor, and no training whatsoever, and no experience with Cimzia) is that 3 month (90 day) trial period is probably standard. You might want to check with the Cimzia threads to see if others with experience can give you some idea of how long it took to work for them. Bear in mind, everyone is different, and individual cases cover the spectrum in severity, intensity, complications...

I'm no expert on anything... and my knowledge of how LDN works is partly anecdotal, with some parts being little more than folklore, and some taken from posts, articles, etc., from doctors, scientists, or just other sufferers of this disease. There are very few 'real' experts in LDN, and the interaction between it and other medications. My own personal take is that... the healthier, more robust ones immune system is, the better that LDN seems to work. When I first started on it, if I got flu, or bad cold, anything that would put a strain on my immune system, I would experience some minor flaring. However, as soon as the cold/flu whatever passed, my flare would go away very fast. As years passed, these became fewer and fewer... until now, if I catch a bug, it doesn't affect my Crohns at all. The reason I raise this.. and type so much extra reading..is that I don't know what the effect of large doses of Pred or Cimzia might have on your immune system. It probably won't affect the LDN... but if the LDN works better with a strong immune system... well, you can see there is a potential for troubles in that case.

If neither high doses of Pred or Cimzia suppresses the immune system, it shouldn't make a difference. I just don't have the knowledge or expertise to make that assumption. And if a doctor is mistaken, (about the mechanics of how LDN works its magic) then this may not be your best choice. Thing is... a doctor MAY look at the drug desk reference and there would be no red flags raised by taking both... without stopping to consider if what one drug does to the body might offset the potential benefits of the other. That is the big conundrum. I'm not saying it would, I'm saying I don't know, and I'm not entirely sure the 'experts' do either.
09-30-2013, 06:25 PM   #210
Jess82
 
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Hi all! I'd love to join in. I was on LDN for about 6 months of pure heaven. The medicine paired with the SCd diet really seemed to do the trick. Then out of nowhere things got bad again. I recently got off the LDN for two weeks in hopes to jump start things again. So far 10 days in at 1.5 and no luck. Praying for success again!
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