Mystery unfolding and going with nuclear protocol!

[gluten]

Hi Joan, What is interesting about the article about autism is that she changed his diet to whole foods with fruits and vegetables with are high in antioxdiants. Jon

[Zizzle]

and I have a gut that just won't seal, even on the strictest diet (AIP).

Please forgive me, because I don't mean to be facetious, or cruel, but the main reason why your leaky gut won't seal, or heal, is because you violate your diet on an almost daily basis. Good intentions in and of themselves, are not sufficient, where diets are involved. Strict diets are actually only strict if they are strictly executed at all times (not just when it's convenient).

Tex

Wow, Tex, I didn't realize you had moved in with me and were monitoring my food intake! I'll have you know I was strict AIP for 90 days, much longer than the recommended 30-60 days. It was extremely difficult, and I only slipped slightly during Thanksgiving. I only loosened up this year because my MC was in remission and I knew I was avoiding foods that I never reacted to in the past. So a few nuts are back in, occasional rice and quinoa are back in, and I'm experimenting with nightshades. Still no eggs, corn, or other GF grains. My last experience with D was while on vacation in FL, where access to safe food was difficult.

Given my MC is all but gone, I wish I could say my gut is sealed and healed, but until the rash is gone, I can't make any conclusions. But I, for one, congratulate myself on my dietary efforts of the last 6 months.

[tex]

Wow, Tex, I didn't realize you had moved in with me and were monitoring my food intake! I'll have you know I was strict AIP for 90 days, much longer than the recommended 30-60 days.

I didn't have to move in with you — all I had to do was read your posts. Your dietary peccadillos are well documented. It's the somewhat regularly-scheduled (albeit mostly unintended) gluten challenges that are preventing your gut from healing, not so much the nuts and other grains. I realize that your work and travel schedule means that you end up eating away from home a lot, but gluten is gluten, no matter where you ingest it, and no matter whether it's ingested accidentally or intentionally — the damage is the same. Compared with the intestinal damage done by gluten, the effects of those other foods are pretty much a moot point.

Given my MC is all but gone,

Your long-term maintenance regimen of prednisone is responsible for helping to limit your symptoms.

But I, for one, congratulate myself on my dietary efforts of the last 6 months.

I applaud your efforts also, and I empathize with you. I'm truly impressed by how much you are able to accomplish while juggling all sorts of health issues, work commitments, and family obligations, and I probably have more respect for your abilities than you ever imagined.

But my goal is not to pat you on the back, but to help get you to remission. You're a workaholic (even to the detriment of your own health, at times), and I wish that it were easier for you, but realistically, it's not your efforts that are the source of the problem — you put plenty of effort into your recovery program. The problem is somewhat frequently-compromised diet compliance with regard to gluten-avoidance. We can have the best of intentions, and work our fingers to the bone, but that cannot guarantee dietary success, as long as gluten continues to slip into our diet with any degree of regularity.

Remember: anti-gliadin antibodies have a half-life of 120 days. That means that we don't have to kick a few more antibodies into the mix very often, in order to keep the level in a slow but steady uptrend. You will begin to see increased effects of that characteristic, after you discontinue the prednisone.

I realize that I'm an obnoxious pest, but I too, would really like to see all of your symptoms in remission, and no more need for meds.

Tex

[wmonique2]

Z.,

I am going to chime in notwithstanding all of the expertise advice you already got. I am just a lowly reporter but common sense should prevail.

You feel good. So, what the hell are you doing rocking that feel-good boat? Isn't that what we all want? Quit digging when you're ahead of the game.

I am puzzled. (and LDN is not "just suppressing the inflammation". It allows your body to heal).

Monique

[gluten]

Hi Monique, I have learned allot since I joined this site. But, I will never stop looking for the reason for MC even after having the symptons under control without meds. Now, I have more energy and ready for spring. It has been a long winter. I looked up the LDN and found it interesting how it controls the endorphins. Also found that one amino acid can effect the endorphins. Jon

[wmonique2]

Jon,

I didn't mean to imply that we should stop trying to find a solution. Not at all. I am not. I just think that Z. has just started her LDN and she should give it a chance to work. LDN is not an overnight miracle drug. Also, what did you mean by "one amino acid can affect endorphins" ?


Monique

[Zizzle]

Well, my insurance somehow approved the Vancomycin, but then I read about redman syndrome and other nasty possible side effects. I think I'll pass for now. I also can't seem to find clostridia species implicated in DM or other similar conditions, but I'll keep looking.

Here's another explanation about how LDN works that I found interesting:

https://onedrive.live.com/view.aspx?cid ... dPdf&wdo=1

I'm a little concerned that I'm on a relatively high dose, but I'm tolerating it just fine...

One issue I've discovered with others is that I can't retain water and stay hydrated. My BP is always very low 80-90 over 40-50. I eat salt, but I seem to pee more than before. Need to up the hydration.

[wmonique2]

Z.,

I read that same thing a few days ago. I take 4.5 and when I read the dose there, I got concerned. However, Dr. Jill Smith who conducted the clinical trials with Crohns employed 4.5 for the 4 week trial period and that is why I chose to go for the higher dose.

Except for this particular report, everything I read says that the higher dose is the ideal dosing. I tolerate the dosage but I am not sleeping that well anymore.

I think that I am going to change the pm dosing to am dosing.

Hope you can solve your mystery and find out why your bp is low.

Monique

[tex]

OK, I'm just standing here on the sidelines, trying to learn why or why not this treatment might work, and I'm confused. Why do both of you assume that a higher dose than is recommended by the very people who spent 30+ years developing the treatment, is better? Tolerance is not the issue — efficacy is the issue. Why would you take someone else's word on the dosage over the recommendations of the originators of the treatment? Why would you assume that more is better?

Tex

[wmonique2]

Tex,

Absolutely not. I am not thinking that more is better. I am thinking that the dose that was recommended and was used in the clinical trial IS THE CORRECT DOSE. It is the dose that PROVED and ELIMINATED inflammation.

I saw something written in the link Z. included (and only in that paper) that cautioned against taking 4.5mg for reasons that are too complicated to explain although the originators of this protocol suggested 4.5mg and thought that it was the optimal dose.

The link included above explains it differently but that is THE ONLY PLACE were I saw such an explanation. I am not a biologist and cannot support or challenge that.

However, there are people that cannot tolerate this dose and must take less but I am tolerating mine so far so I am sticking with it.

I know that addicts take 50mg each day and they survive it so I am not concerned with my dosage.

Monique

[tex]

You keep bring up tolerance, but as I pointed out, tolerance is not the issue — dosage is the issue, because the name of the treatment is Low Dose Naltrexone.

Do you happen to have a link handy, for the details/results of that trial?

Thanks.

Tex

[wmonique2]

Here are several trial but the one I am referring to is by Dr. Jill Smith down the page. It's been published in several gastroenterology journals.



http://www.lowdosenaltrexone.org/ldn_trials.htm

[Zizzle]

4.5 is the gold-standard dose for efficacy according to various clinical trials, but some people have a hard time tolerating this dose, either due to insomnia, headache, thyroid activation or other issues. There are anecdotal reports of some people getting better efficacy on lower doses (like 3 or 3.5), but not enough to warrant selecting that dose if you can tolerate the 4.5 dose. If I reach total remission at 4.5, I may consider dropping down a bit eventually. We'll see...

[tex]

OK, that was a pediatric study. Pediatric dosages are not necessarily linearly translatable for adult use, because kids heal faster, and their immune system is still developing.

That said, Dr. Smith used a relatively high dosage rate in that study, (0.1 mg/kg). Why did she select such a high rate? And why weren't additional studies done using different dosage rates, in order to learn something about optimizing the dosage rate? Have other studies already established that 0.1 mg/kg is the optimum dosage rate?

Using that rate to calculate dosages, a 4.5 mg dose would be correct for 100 lbs of body weight. Someone who weighed 132.5 lbs, for example, would require a 6 mg dose, based on the 0.1 mg/kg rate. Someone who weighed 160 lb would require a 7.25 mg dose.

That doesn't jive with conventional thinking (4.5 mg for everyone), suggesting that either pediatric dosing is necessarily higher than adult dosing, or she knows something that no one else knows (which doesn't seem likely). So that study seems to raise more questions than it answers, and the biggest one is, "Why is everyone else using a lower dosage rate?"

Thanks,
Tex

[Zizzle]

Apparently LDN dosing is not weight/size dependent. It has more to do with individual chemistry and which condition you are treating with it. For example, people with MS and Hashimoto's have to start at lower doses and slowly titrate up, with some people never exceeding 3 mg, whereas those with IBDs seem to tolerate 4.5 from the outset. There were a couple studies done at 6 mg and the results were not good.