My Thoughts On Why LDN Doesn't Work Very Well For MC

[tex]

Hi All,

I'll agree right up front that LDN (plus diet changes) seems to be very effective at helping to control many autoimmune diseases. But as most of you have probably also noticed, it doesn't seem to be very effective against MC. It can help to control MC symptoms by resolving other AI issues that may be preventing remission from MC, but when it comes to resolving MC itself (in the absence of other AI issues), so far LDN hasn't had a very good track record. And of course we all wonder why. I've devoted a fair amount of thought to this lately, and a post that Deb made today finally caused it all to gel.

Her post was about a blog in which Cris Kressor explained how LDN helped to control his wife's Graves disease. But specifically, his mention of how LDN stimulates regulatory T cell function to suppress inflammation, suddenly made it clear to me why LDN hasn't seemed to work very effectively for most members who have tried it for controlling MC.

MC is described as a T-cell driven disease. But for some time now I've been questioning that claim. After reading what Chris Kressor wrote, my conclusion is that contrary to the official medical description of the disease, MC may not be the result of T-cell driven inflammation, after all. I'm thinking more and more, that MC is a mast cell-driven disease (rather than T-cell driven).

Now I don't deny that an increase in T-cell activity is associated with MC. And obviously doctors attach a huge amount of significance to the T-cell connection, because they use the T-cell count as a diagnostic criterion for LC. But that doesn't mean that MC is caused by increased T-cell activity any more than the convoluted thinking that would conclude that fire trucks cause fires, simply because they are always associated with fires. Like the fire trucks, just because the T cells are there, doesn't mean that they are actually responsible for perpetuation of the inflammation that causes the symptoms associated with MC.

After doing some more research and studying published data, I've found a lot of supporting evidence for my theory. And as additional evidence for the correctness of my theory, note that if MC was not a mast cell-driven disease, antihistamines would not resolve the symptoms. I'm giving some serious thought to writing another book about what really causes MC. It's looking more and more as though the official medical concept of the mechanism that perpetuates the disease is incorrect.

Tex

[Deb]

Really, really interesting, Tex. Thanks, Deb

[humbird753]

Very interesting, Tex. So... if I were to try 1 Allegra every a.m. and 1 Chlorphen-12 at bedtime, I should experience significant improvement with MC issues? Those are H1 and H2 histamines, right? And, of course, continue with D3 (5000 i.u.) and the B Complex supplements I am on.

I say your comments are interesting because I remember at my annual PCP appointment, I told my doctor about LDN being used for MC and asked for her thoughts on it. Her comments about LDN were mainly with regard to the high percentage of her patients suffering with fibromyalgia, and not MC.

Paula

[tex]

Paula,

Of course there is always the possibility that some MC cases are not associated with mast cell activation, and we all know that no treatment works for everyone. But . . . if there's any truth in my theory, then what you proposed should work in most cases. Allegra and Chorphen-12 are both H1 type antihistamines, and my theory is based on H1 receptor response. It appears that H4 receptors may also play a role, but let's not worry about that at this point.

And remember that I'm not a doctor, so I'm not recommending any treatment. I'm just pointing out some possibilities, based on published research. A lot more research needs to be done before we can reach any solid conclusions.

Tex

[Lesley]

Interesting. LDN has REALLY helped my energy and my mood. Also helped reduce much of my FMS pain, and 2 other very significant things. One: my urinary incontinence has improved beyond measure. I have had NO accidents, not even at night when I had at least 2 floods a night until I used the pessary. I have NOT used it for 6 months, and have had no problems. A couple of other people mentioned improvement with urinary leakage. My uro-gynie is fascinated and is going to look into it since that is her speciality. She is also working with a GI on a clinic for women that deals with all the problems of the nether region in women. Also, for the first time since I first found out about my low sodium levels 20 odd years ago, has entered the normal range very solidly. This is also contributing to my higher energy levels. However, it has had no significant effect on my MC. The improvement I have been experiencing is altogether due to the patient mentoring from wonderful Gabes and the supplement program on which I have embarked. And there is improvement. Progress, not perfection. And there is progress.

So pooh pooh to my PCP and my GI!! Thank you LDN and Gabes.

[mzh]

I am one for whom H1 and H2 antihistamines have done nothing. I am also one who has been off Entocort the last 9 months after being on it for almost 10 years. My only change has been LDN. I don't understand the mechanism but I'm sure grateful for LDN.

[JLH]

This is about his Autoimmune Podcast.
Jayne Crocker said " In the Crohns study, it did not show 78% of people went into remission, it was 78 percent of those on naltrexone experienced healing in the lining of the intestine! LDN does NOT work for pancreatic cancer due to methylation issues. I cannot believe what I am hearing! Amazing what some will say to desperate people. What a load of rubbish! I use to be a fan of Chris Kresser, no more."

BRB with more.

..
Jayne Crocker Thanks Jennifer, sorry the last sentence in my response made no sense to me either (one finger typing on the phone) - lol. I believe I meant to say "look forward"..... Yes I was a huge fan of Chris Kresser as I enjoy the way he explains things. Therefore it was a huge disappointment when I heard him talking about LDN in the manner he did. And I agree, it's because of his blogs many have learnt about LDN, but we really need the facts, not the "it does everything you want it to" speech. He's not alone many fall into the trap of reading an article, believe it and why not? Especially from whom I considered a credible source. I was just disappointed and then angered as it's very hard to dispel myths once they are started. I will post below the T lymphocyte study.

8 hrs · Like
..Jayne Crocker The study states:- Given the extensive connection between the immune system and autoimmune diseases, the present study was conducted to examine the relationship of the OGF–OGFr axis and T lymphocyte proliferation. It explains that "Persistent blockade of opioid receptors with the general opioid antagonist naltrexone (NTX), as well as antibody neutralization of OGF-like peptides, had no effect on cell number." So what this means is that LDN does not effect T lymphocyte cells - it neither boosts them or suppresses them. It goes on to say:- "These data reveal that the OGF–OGFr axis is present in T lymphocytes and is capable of suppressing cell proliferation." What this means is that taking LDN to benefit from the rebound effect where OGF interacts with the OGF receptor, we can stop the activation of T lymphocytes when they are 'proliferating'. LDN or OGF won't touch them unless they are active which makes it a very attractive option for those with AI diseases as it's the T and B lymphocytes that make up the immune system. Hope this helps http://www.sciencedirect.com/.../pii/S0171298510001841

8 hrs · Like
..Jayne Crocker Thanks for sharing the article Jennifer Ann Walsh, I enjoyed the read and noted too there was no references to studies in the LDN section. I think that's where we need to be careful when we read such articles when people write things like "apparently" and other forward thinking statements. I was surprised the article said this about LDN "However, LDN does nothing to address the autoimmune trigger, which means that people will need to take LDN on a continuous basis. And this is assuming that it works, as while LDN has helped many people, it isn’t always effective in suppressing the autoimmune component."

[Zizzle]

Hmmm, I never had much success with antihistamines, but I suppose I didn't give them a long term try. I think my remaining MC symptoms are dysbiosis, leaky gut, and celiac/gluten/gluten cross-reactivity related. LDN can't fix my leaky intestines, the abnormal mix of gut flora, or the candida overgrowth. All it can do is help to minimize my immune system's response to these things, which I do think it does, just not 100%. I'd day LDN controls about 90% on my autoimmune disease and about 30% of my MC.

[wmonique2]

Interesting post, Tex.

I may not understand the mechanism of how LDN works -- whether it is T-cells or mast cells but one thing I can say is that I am in COMPLETE REMISSION from LDN.

IT HAS RETURNED ME TO THE STATE I WAS PRE-MC. And I take an ultra-microscopic dose. It is approx .6mg a day. Yes, about half-mg a day. Take in consideration that those who take it for its intended use are on 50-300mg a day.

It has, unequivocally, returned me to my previous health status. I can eat anything I want. I can drink coffee. I can drink wine. I can eat any fruit or vegetable or any fiber or anything. NAME IT. I can do it.

But I don't. I don't want to tempt fate. I continue to be GF and SF and pay attention to my fiber.

Also, I STRONGLY believe that the rest I gave my gut for the last three years by dieting and being very cautious is what allowed my gut to heal to the point that LDN did the rest.

As many of you know, I was on Lialda, Entecort, 2 kinds of Anti-histamines, Elavil and I was still very sick most of the time. I had no D but I had debilitating nausea and that went on for more than 3 years.

Lialda elevated my liver enzymes to the point that my doc was preoccupied and wondered whether I should start taking something for that. Liver enzymes returned to normal 30 days after taking LDN. Antihistamines worked marginally for a while. Elavil kept me hungry and sleepy most of the time. I gained weight on it. The most debilitating side effect of Elavil was brain fog. I wasn't able to function properly. I was in a perpetual state of confusion and forgetfulness. I didn't think I will ever go back to being my old thinking self.

I am no longer taking any of those drugs. The only thing I take is LDN every other day.

I am a strong believer that anyone with MC should try it. It has been a miracle drug. It may not work for everybody but they should try it and GIVE IT TIME TO WORK. There are no side-effects to taking it and it has worked better than anything else I have taken. All of the drugs I took left me debilitated from the side effects. Not LDN.

Not every drug works for everybody. Lialda worked for me but it doesn't work for everybody. Same with Entecort and other drugs.

I have plenty of energy and I could tackle another book if I wanted to. Now that's a miracle. :)

Love,

Monique

To read more about it : www.lowdosenaltrexone.org
There are several Facebook pages: LDN Trust Fund is one

Where to buy it: It needs to be compounded into micro doses since it comes in 50mg pills and the recommended doses for us is maximum 4.5mg. Best pharmacist is Skip's Pharmacy in Boca Raton FL. He is an expert on LDN.

Best if you can find a doctor that will prescribe it for you. My GI went along with me once I presented all the evidence to him. A Functional Medicine doc will do it too.

If you can't find a doc, you can order it online at www.alldaychemist.com. It comes in 50mg pills and you have to dilute it with 50ml water then you can draw what you need out of it.

Buyldn.com sells it online already compounded. Just choose the dose you want. Start with a very low dose and increase as you need it. 0.5mg is best.

There are several FB pages where you can ask questions and get support from others.
https://www.facebook.com/groups/380829732055771/

And also: IBN and LDN https://www.facebook.com/groups/IBDLDN/

There are plenty of other resources online.

Good luck in your journey.

[kayare]

This is such an interesting post! As I think back, an antihistamine, Benadryl, made all the difference in my MC. I added it long after my dietary changes and vitamins. I slept better and felt better. Later, I added LDN. It made me feel better overall. I have more than one autoimmune condition, so it's not always easy to differentiate among them. I believe the LDN was really helpful in reducing overall pain. Enough sleep and reducing stress are other components for me.

Kathy

[carolm]

This is an interesting discussion. I feel like I fall in the category of people who benefit from antihistamines (both H1 and H2), but really had no good effects from my trial of LDN (that I was hoping would help motility issues). After several days, when others noted they were having improved mood and more energy, I did not feel well-- I felt drugged, slowed, and like I was coming down with something. I did 3 separate trials and never felt well. I feel better now on D3 and magnesium along with my antihistamines.

But I have no thyroid issues, arthritis, or skin rashes (fortunately) or other active AI conditions like fibromyalgia. I was already in remission with diet changes, as was proven later by the biopsies I had done in August..... so I'm guessing I was taking something I didn't need. In reading up on LDN I agree with others that feel it's more effective for those with a broader range of AI conditions but probably not for MC alone.

Having said all that, I did recommend it to a friend of mine who was on methotrexate and Humira, for her numerous autoimmune conditions. It would be much safer than the meds she was on!

Carol

[nerdhume]

Monique,
I would like to try LDN. Where did you get yours? Does your dr. monitor it?

[humbird753]

I thought this was interesting and hopefully I've copied it here correctly and it can be read. Regarding Alcaftadine (H1, H2 and H4 receptors).

http://www.dovepress.com/alcaftadine-a- ... icle-JRLCR

It's not so much the drug (alcaftadine) that I found interesting, but the experiments performed.

Paula

[wmonique2]

Theresa,

I am adding to my original post listed above the info you need about LDN.

I am going to ask Tex if he can post it in the Stickies Notes and also in the Success Stories.

This information should be available to anyone who wants to try it.

Thank you Tex.


Monique

[tex]

Paula,

That's an interesting antihistamine, especially since it has a moderate effect on H4 receptors.

Thanks for the link,
Tex