LDN and Normans

mzh · Post by **mzh** » Mon Aug 11, 2014 8:25 pm

I started using LDN (low-dose naltrexone) last March and have had Normans ever since! There were 3 bouts of D but only b/c I was too constipated and it decided to get out that way. LOL Now I eat a few prunes and all is well. I started getting constipated before the LDN but was on 3 mg of Entocort once a week. After 12 years of D, this is a whole new world for me.

I took it as a last resort to get off the Entocort; it's now my first resort.
.

Oh yeah. Most of my aches and pains are gone too!

Gabes-Apg · Post by **Gabes-Apg** » Mon Aug 11, 2014 8:37 pm

Woo Hoo!! Great news!

hope the wellness continues to improve! enjoy

CathyMe. · Post by **CathyMe.** » Wed Aug 13, 2014 5:45 am

Awesome news! So happy it's working for you.

mzh · Post by **mzh** » Wed Aug 13, 2014 7:05 am

Thanks! I have to say, I haven't felt this good in many decades. (I'm 70.)

JLH · Post by **JLH** » Wed Aug 13, 2014 10:20 am

Great news! This thread will be going to my GI!

Praying my results will be as good as yours (Monique, Lesley and others, too). As you know, I started on July 18th at 1.5 and have seen no difference what so ever. I will bump up on Sunday.

Post by **tex** » Wed Aug 13, 2014 12:44 pm

Marcia wrote:I started getting constipated before the LDN but was on 3 mg of Entocort once a week. After 12 years of D, this is a whole new world for me.

OK, I'm puzzled. I see this type of scenario pop up here over and over again, for various alternative treatments. A member will be close to total remission, and instead of allowing a little more time for complete healing, they will add treatment "X", and when total remission arrives, they will proclaim treatment "X" to be the "obvious" reason.

I'm trying to understand the reasoning here. What am I missing?

While I'm as happy as a butterfly in a 100 acre field of buttercups that you're feeling better than you have in decades, I felt exactly the same way when I reached remission, and I have never taken LDN, (or any of the other alternative treatments occasionally lauded here). 3 mg of budesonide per week is about as close to not taking any as one can get. And obviously the LDN didn't eliminate the C (the prunes did that). Now I'm not saying that the LDN might not have provided all sorts of benefits, I'm just wondering why you consider it to be a virtually miraculous treatment for MC when you were already D-free before you started the treatment. What am I overlooking here?

And please don't misunderstand me, I support the use of LDN when nothing else seems to work. And I do believe that for many people, if properly used, it has the capability to reprogram certain functions of the immune system, at least on a temporary (as long as it's used) basis. But I would really like to understand what there is about it that promotes such an enthusiastic attitude among users. Evidently one of it's most important attributes is the promotion of serotonin. I suppose my most important question is, "Why do you feel that it is solely responsible for your remission?" IOW, why (with the D already under control), did you not feel that you were in control of your MC before you started taking the LDN? Let's try to get to the bottom of this, so that we can better understand the details of how it actually works, from the patient's perspective.

That said, congratulations on getting your life back.

Tex

mzh · Post by **mzh** » Wed Aug 13, 2014 5:23 pm

I really didn't take it just for the BMs; I took it for the aches and pains and more energy and hoped that the Entocort would be a thing of the past as well.

Usually when I stop Entocort and think I'm all better, the D starts again in a couple of months (as expected when the Ento is out of one's system). This time it didn't restart in the two months that I effectively was off the Entocort except for the 3 mg once a week and on the LDN. It's been about 7 months instead of two.

I hope this is clearer.

mzh · Post by **mzh** » Wed Aug 13, 2014 5:32 pm

An addendum: I now drink coffee, eat almonds, cole slaw, popcorn and cantaloupe. The only thing I avoid 99% of the time is gluten. I guess I need to change my profile.

JLH · Post by **JLH** » Wed Aug 13, 2014 5:55 pm

That is so encouraging............

Gabes-Apg · Post by **Gabes-Apg** » Wed Aug 13, 2014 6:15 pm

Tex
like so many before, quite often there is no exact science!

there is no right way, or wrong way... there is what works for each individual.

mzh · Post by **mzh** » Wed Aug 13, 2014 7:14 pm

Post by **tex** » Wed Aug 13, 2014 8:46 pm

mzh wrote:I really didn't take it just for the BMs; I took it for the aches and pains and more energy and hoped that the Entocort would be a thing of the past as well.

Usually when I stop Entocort and think I'm all better, the D starts again in a couple of months (as expected when the Ento is out of one's system). This time it didn't restart in the two months that I effectively was off the Entocort except for the 3 mg once a week and on the LDN. It's been about 7 months instead of two.

I hope this is clearer.

That makes sense. And I do appreciate the extra information. I've always felt that LDN works better for systemic AI symptoms than it does for classic (official) MC symptoms (that is, intestinal/digestive issues only), and what you're saying seems to support that also. But I realize that others may disagree.

Gabes wrote:there is no right way, or wrong way... there is what works for each individual.

Yes, but everything happens for a reason. I'm trying to learn/figure out which categories of MC patients are most likely to benefit from LDN treatment, because as we are aware, some of us don't seem to respond to it, while others see it almost as a miracle drug. There have to be reasons why some do well on it, while others do not.

Are the differences in outcomes due to genetics, or other personal qualifications, or are they due to unfortunate choices in treatment options (dosing, or time of treatment, for example), or could the differences be due to other treatments (unrelated to the LDN)? Or, could the differences be due to the presence of additional AI issues that may be as important as, or even more important (symptom-wise) than MC, and they are preventing remission?

As you may have guessed, I'm kind of leaning toward the last possibility I listed, as the reason why some people here are unable to achieve lasting remission from MC using diet, or diet plus conventional medications, but they can get to remission by adding LDN to their treatment program. IOW, looking at which members here have found LDN to be very beneficial, and which ones have not, I'm wondering if the reason for success in many of these cases may be because those individuals have more going on than just MC. Am I on to something, or not?

Are you still taking 3 mg of budesonide each week? If so, do you plan to continue that, and is your doc on board with that? I could be wrong, but at that low rate, I don't see how it could cause any long-term issues. I'm just curious how your doc sees it.

I've forgotten — is your doc on board with the LDN, and if so, is she/he an ND? Sorry for all the questions — I have trouble remembering all the details of what everyone is doing, and I hate trying to make suggestions to others without knowing at least some of the facts, because as we all know, sometimes the devil is in the details.

Many thanks, I appreciate your insight.

Tex

mzh · Post by **mzh** » Thu Aug 14, 2014 9:03 am

Tex, I have a lot of aches and pains that are not just from joint pain. I haven't been dxd with fibromyalgia but my massage therapists and PTs all think I have it. So, that may be why LDN works so well with me. My rheumatologist said I could take Lyrica but I didn't want to add that to Entocort.

I have not taken the Entocort on a daily basis for months. I take one once in a while b/c I'm scarred to death to get it completely out of my system. I'd say I take one every 2-4 weeks.

My PCP doesn't know I'm taking LDN but I have an appt this month when I'll tell him about it. I've been getting it on my own from India and Israel. If he doesn't go for it, I'm gonna take it anyway; hopefully, I'll be able to keep my doctor!

Lastly, I have the HLA-B27 gene so I could get ankylosing spondylitis or other rheumatic diseases. From Wikipedia:

In addition to its association with ankylosing spondylitis, HLA-B27 is implicated in other types of seronegative spondyloarthropathy[5] as well, such as reactive arthritis (Reiter's Syndrome), certain eye disorders such as acute anterior uveitis and iritis, psoriatic arthritis and ulcerative colitis associated spondyloarthritis. The shared association with HLA-B27 leads to increased clustering of these diseases.[6]

I don't think I have any of the above but I do have a strange eye disease called Fuch's dystropy. I also have cataracts forming, which I can't get rid of b/c of the Fuch's plus the beginning of macular degeneration. I don't fully understand how that works together. When it gets bad enough, I'll study it.

Post by **tex** » Thu Aug 14, 2014 10:09 am

Marcia wrote:If he doesn't go for it, I'm gonna take it anyway; hopefully, I'll be able to keep my doctor!

I hear you. I was just curious about how many doctors are open to this treatment, and/or may be beginning to warm up to it. I lost a PCP a few years ago because I told him that I had experimented with a treatment (not LDN).

Apparently Fuch's dystrophy is also a genetic (or rather inherited) defect. I have drusen (diagnosed over 30 years ago), which also supposedly is associated with macular degeneration, and the last time I saw an opthalmologist (7 or 8 years ago) he told me that I have cataracts forming, and I would probably need to have some of them removed within a year or so, but since they weren't yet ready, to just wait and watch. I'm still waiting and watching. I've noticed that my vision does not seem to have deteriorated noticeably (contrary to what I would have expected) since I changed my diet, about 12 years ago. The years continue to click by, but the only time I need glasses is for reading under less-than-optimal light conditions, so I use cheap reading glasses, just as I have been doing for over 30 years now.

IOW, I believe that the diet changes we make also help to reduce the vision losses normally experienced as we age. Of course I'm just guessing, but when I look back to what the opthalmologist told me when he diagnosed me way back then, and considering that I had a pretty significant accumulation of drusen already at that point, he gave me the impression that I would be lucky if I could see anything at all, by now. So I'm glad that he was wrong.

I also understand your position on budesonide (and your dilemma), in view of the fact that each time it's discontinued and then restarted, it loses some of it's effectiveness, but it's also associated with the formation/development of cataracts. The decisions we have to make with these diseases may be more stressful than the diseases themselves, in many cases.

I hope you have continued success with your treatment program.

Tex

dfpowell · Post by **dfpowell** » Thu Aug 14, 2014 10:49 am

Tex,

I have been taking LDN for the past 4 months. I decided to take it to see if it could help with symptoms as I felt like my diet changes had leveled out and I was not getting further results. I did not have any joint aches so no symptoms to relieve. I do not think this has been a miracle drug for me but it has been a support.
What I have found is that I have a more steady state of feeling better, and not so many ups and downs with my energy level and I sleep better. The LDN seems to have lowered my MC symptoms, meaning less gurgling, and less loose stools. I can still get loose stools 1-3/day vs 4+ if my diet includes trigger foods.
I have an integrative medicine doctor (MD, who trained at the Mayo Clinic and then did an alternative medicine program) that prescribes LDN for me so I have no need to discuss this with my PCP. My integrative doctor actually used LDN, herself, for 2 years because of an inflammatory eye condition, which she says is in remission now. She also uses LDN for clients with cancer and states it has been effective for them in keeping their cancer at bay.
When I decide to lower the dose and taper off, I think at that time I will better be able to evaluate its effectiveness.