Mystery unfolding and going with nuclear protocol!

[wmonique2]

Z.,

I am thinking along the same lines as you do in term of dosage. When I achieve the results I want to see I may drop the dosage for maintenance.


Tex,

There is another study further down on the page with Dr Smith with adults. You must not have seen it. There are plenty of studies that have been done with the 4.5 dose including the one done by Dr. Bihari, the man who actually started using LDN off-label. I don't know why there are no studies with smaller doses. Very few doctors endeavor to do studies with LDN because they are not subsidized by big pharma.

The consensus in the MS community is to start with a lower dose because of "spasticity" issues. But I talked to Dr. Skip Lenz who is an expert on this stuff (he has more than 10,000 on it) and he has studied over 1,000 on this (he has been doing this for 15 years) and he recommended to me to jump into the optimal dose because in his words "if you want to kick colitis in the butt, you have to do it this way".

And he is right. I started seeing results within a few days. And I will, later, post some other improvements. I am almost afraid to believe that it is happening and that it is true. Cautiously optimistic is my current state of mind.

Monique

[Lesley]

So, Monique, when mine comes, do you suggest taking the max dose? 4.5?

[tex]

Monique,

You're right — that other study does look a lot better. Crohn's disease is kind of a tough one for treatment trials anyway, because episodes of spontaneous remission are common enough that the phenomenon contributes to a relatively high success rate for placebo results in many trials.

Thanks for the clarification.

Tex

[Zizzle]

O...M...G. I think I found my smoking gun, and it's something I haven't thought about in a while, but my LDN research brought it all back. Bear with me...I might have trouble explaining, but here goes...

I believe I have an infection or am carrying a gram-negative bacteria that produces a lipopolysaccharide (http://en.wikipedia.org/wiki/Lipopolysaccharide) that is chemically close or identical to a substance or cells in my skin and gut mucosa (molecular mimicry). In attacking the LPS of this bacterium that is hiding, my immune system also targets host cells. I believe this bacterium made its way into my bloodstream through my permeable intestines, caused by a combo of yeast overgrowth and gluten ingestion. The LPS of this bacterium "binds the CD14/TLR4/MD2 receptor complex in many cell types, but especially in monocytes, dendritic cells, macrophages and B cells, which promotes the secretion of pro-inflammatory cytokines, nitric oxide, and eicosanoids.[14]". Basically, it activates toll-like receptor 4 which causes inflammation.

The 2 medications I am taking that affect my symptoms, Plaquenil and LDN, are both toll-like receptor 4 antagonists (but few people concentrate on this method of action). I think the benefits I get from LDN are primarily from this activity, since my rash is amazingly calm in the morning, but worsens as the day goes on (and the LDN is out of my system, no longer interfering with TLR4 action.) I started taking Plaquenil twice a day, because I felt I needed split dosing for more coverage in the evening. I suspect Plaquenil is not nearly as effective as LDN at suppressing TLR4 activity. Interestingly, there is a small subset of people on LDN who take it twice a day, and they don't know why it helps. I propose that it's suppressing TLR4 mediated inflammation, not just raising endorphins.

A gram negative low-grade/stealth infection might also explain why I get remission while on most antibiotics.

Am I crazy?



A few sources:

All about TLR-4: LDN is mentioned as an antagonist, but not Plaquenil.
http://en.wikipedia.org/wiki/TLR_4

Plaquenil and TLR-4 signaling: (btw, LDN also helps with HIV in the same way)
http://bloodjournal.hematologylibrary.o ... 0.full.pdf

"Bruce Beutler was awarded a portion of the 2011 Nobel Prize in Physiology or Medicine for his work demonstrating that TLR4 is the LPS receptor." http://www.nobelprize.org/nobel_prizes/ ... press.html

List of bacteria, gram positive are second:
http://quizlet.com/5349160/list-of-gram ... ash-cards/
Could it be regular e.coli that got into the bloodstream, or some less known, less virulent bacterium?

Anyone know anything about alkaline phosphatase?

It has recently been shown that a specific enzyme in the intestine (alkaline phosphatase) can detoxify LPS by removing the two phosphate groups found on LPS carbohydrates.[11] This may function as an adaptive mechanism to help the host manage potentially toxic effects of gram-negative bacteria normally found in the small intestine.

Well, well, it turns out oral contraceptives significantly reduce levels of ALP, and I was on them for 10 years!! I thought they only contributed to yeast overgrowth. Now they potentially cause loss of tolerance to resident E. coli?!?
http://www.ncbi.nlm.nih.gov/pubmed/9877094

[wmonique2]

Responding to Lesley----I say yes. Because if you take less you have to get adjusted to the drug with this first dose then later you have to go through the adjustment period all over again.

So, take the second dose right away and if it's too much, you can always cut back.


Monique

[wmonique2]

Tex,


I'll take healing in any shape or form it comes, placebo or not. LDN is a lot less toxic and harmful than all those other drugs I've been on for 3 years (and let's not even talk about the cost of those toxic drugs).

I've been lurking around the LDN facebook and yahoo forums for a couple of years and the stories you hear from the thousands of people who are taking LDN don't all count for placebo.

Monique

[gluten]

Hi Monique, The amino acid is phenylalanine. Same ingredient that is used in diet drinks called "aspartame". However there are three different phenylalanine's. Here are a few sites, "Endorphins: Natural Pain and Stress Fighters" www.medicinenet.com>home>arthritis center>arthritis azlist "Are There Supplements to take to Increase Endorphins" www.livestrong.com>Food and Drink "DPA-Julia Ross The Mood Cure" https://www.moodcure.com/restoring-natu ... ystem.html Like any drug there are side effects of taking too much phenylalanine. Jon

[gluten]

Hi Zizzle, I found your statement " A gram negative low grade/stealth infection might also explain why I get remission while on most antibiotics" I found this interesting because when having c-scans of my pelvic region they noticed inflammed lyphnodes on two separate occassions. They did not treat in because they called them unremarkable. Another interesting item is that my hair analysis results showed bacteria in the hair many times. It was so severe on one test result, that they suggested a visit to the dentist to look for infection. While you where on antibiotics did you still maintain a restrictive diet? Great post. Jon

[Zizzle]

Jon, I've always had digestive symptom remission on antibiotics, even well before my MC diagnosis, and well before any dietary restrictions. I also enjoyed MC remission for weeks after the colonoscopy, presumably because the clean out reduced the numbers of bacteria too. Do I believe my system is at war with a microbe I carry, but now what? I doubt I can fully eradicate the bacteria. Will sealing my gut and preventing further entry into the bloodstream help? I imagine it might help the rash, but probably not the MC war in the colon.
If blocking TLR4 activation is helping the symptoms by halting the war, does that mean the bacterium is reproducing uninhibited and likely to cause bigger problems as the population increases? Or am I simply forcing my system to tolerate an otherwise normal inhabitant like e.coli? So confused...

[Polly]

Z.,

Dr. Fine believes that remissions sometimes occur after the cleanout procedure because so many of the antibodies are washed out and need time to rise to problematic levels again. At one point he was proposing a regular clean out using Epsom salts, but I don't believe he ever finalized his treatment protocol.

Polly

[wmonique2]

Polly,

Thanks for explaining this! I have always wondered why I was in a remission for 6 months after my colonoscopy and then all hell broke loose.


Monique

[Gabes-Apg]

Great discussion! what a fine group of researchers you are!

Polly, thanks for mentioning the Dr Fine /Epsom salts thing.
The GI in Toowoomba thought everyone should do an epsom salts cleanout every year!

It also supports my plan, that when and if i have to do the next cleanout for scopes, afterwards I will start a Colostrum then pro-biotic treatment, especially now as I have resolved most of the dental issues (minimised bad bacteria from my mouth being able to get into the gut)
at the same time do a low carb, minimal sugar eating plan so that the yeast microbes do not multiply.


Zizzle - your theory makes alot of sense to me!!!
likewise I am pretty sure i have had leaky gut for at least 20 years if not more. (stressed liver was coming up in Acupuncture appointments at least 10 years before the MC Dx.)
We are not just trying to heal the gut, we are trying to cleanse out all the bad/tainted cells (and ?? if that is actually possible)
when i was doing the Bio Impedence, we struggled to get all the various Bacteria/Yeast based issues out.
our assumption was that the semi-constant inflammation I had made it harder to get rid of the bad stuff.

Any wonder our Immune systems are haywire ....

[wmonique2]

I propose that it's suppressing TLR4 mediated inflammation, not just raising endorphins.

Z.

I think you are absolutely right about not only raising endorphins but suppressing inflammation. In three weeks I have managed to cut mesalamine by 2/3. I have never been able to do that although I've tried at least half a dozen times. I wasn't able to cut it even by a one third. I consider that a small miracle.

Monique

[gluten]

Hi Zizzle, Years ago a friend told asked why I had a rash on the back of my right leg. I had no clue, but it was at the same time I was losing muscle mass in the hamstring. After several months the same rash was noticed on the left leg where I was losing muscle mass. I always wondered If it was a bacteria rash or a rash produced by toxins from a bacteria. Polly's post about some people having six months remission after a colonoscopy prep is interesting. IMO, I do not think it will flush out all the bacterias since many live in a bioflim but it will flush out the toxins and change the ph because the prep's have a very high sodium content. Jon

[Zizzle]

Interesting. Well now that I'm going only every other day and very firm BMs, I wonder if I'll need those magnesium cleanouts! If I had bacteria and toxins building up as a result of having less D, I would expect more symptoms and worsening rash, but everything is stable.