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Soy Lecithin/PC enema

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Posted 11/5/2010 11:56 AM (GMT 0)
I wanted to respond to the thread from a few weeks ago on this, but the search feature is not working for me. I can search, get the result, click the link for the thread, and the browser freezes everytime...

Anyway, I'm seriously thinking about trying this. My question is: Shouldn't you buy the actual PC capsules, not soy lecithin capsules? PC is a component of soy lecithin, the component that actually helps the mucus lining of the colon, correct?

So I'd buy this

http://www.vitacost.com/NSI-Phosphatidyl-Choline

not this

http://www.vitacost.com/NSI-Soy-Lecithin

I seem to remeber the guy who seemed most knowledgeable (saki46, maybe) used BOTH, but I can't opened the dang thread and can't figure out why you'd use both.

I sort of brushed it off as not that great a result considering only 50% reached remission or had improvement. I went and read the actual study and saw that all of the volunteers were already to a point of steroid dependency, which makes it a lot more impressive. Just my 3 cents :)

Posted 11/5/2010 12:47 PM (GMT 0)
I am having trouble opening any pages on HW right now..... but I'd thought it was my computer. I'll ask my tech son to look at it later.

I remember the conversation; hopefully someone from that thread will respond. Keep us posted on what you do and how it works!
Posted 11/5/2010 1:56 PM (GMT 0)
we tried it with liquid ppc. didn't help might have been lightly irritating though i'm not sure. also took it orally which didn't do much either way.
Posted 11/5/2010 3:12 PM (GMT 0)
Try this thread:

www.healingwell.com/community/default.aspx?f=38&m=1940970

Zippy123 is going to try Soy Lecithin Liquid and it also has a link to the main Soy Lecithin thread in it.
Posted 11/5/2010 4:53 PM (GMT 0)
Here is the clinical trial that is currently going on in Germany, Lithuania and Romania with LT-02.

http://clinicaltrials.gov/show/NCT01011322
Posted 11/5/2010 6:17 PM (GMT 0)
we used phoschol liquid and pills
Posted 11/5/2010 7:01 PM (GMT 0)

killcolitis said...
we used phoschol liquid and pills

Do you think its worth trying Soy Lecithin Liquid ?
Posted 11/5/2010 7:29 PM (GMT 0)
Orally? I guess, but the german drug in trials is delayed release PPC, which is what is supposed to make it effective. It's worth a try, didn't do much that we could see and my kid was swallowing two horsepills of the stuff a day.
Posted 11/5/2010 7:29 PM (GMT 0)
Orally? I guess, but the german drug in trials is delayed release PPC, which is what is supposed to make it effective. It's worth a try, didn't do much that we could see and my kid was swallowing two horsepills of the stuff a day.
Posted 11/5/2010 10:55 PM (GMT 0)
Oral without the retarding coating just wont work.
I tried 1ml of straight lecithin using a 1ml syringe because they are thin, I thought it was slightly irritating. Perhaps it might be best to dilute in olive oil. Gave up after awhile but might revisit.
Old Mike
Posted 11/5/2010 11:39 PM (GMT 0)
i wonder if it's possible to make a delayed release pill by covering it with something like coconut oil or saffllower oil? The herbalist gerald green has figured out how to make his own delayed release pills, I wonder if we couldn't do it as well?
Posted 11/6/2010 12:05 AM (GMT 0)
If I remember reading some of the studies a few years ago the PC needs to make it to the terminal ileum, an oil coating will be digested way before that.
But there my be another way to get at this, I think I tried it and it did not work but perhaps did not take enough. Anyhow a different approach is to target phospholipase,which causes hydrolysis of PC. Berberine in a phospholipase inhibitor, and it can also help to reduce symptoms of UC,it is found in golden seal and oregon grape root. There are probably other natural inhibitors,if someone cares to try and research them. I just started taking 3 oregon grape root pills again today, which is triple the dose I tried before, if I see anything positive perhaps will increase the dose.

Their PC studies really make sense, the distribution of PC in the digestive tract is the lowest in the rectum and that is where UC mostly starts. Gram negative bacteria have phospholipase in their outer cell wall and it helps them invade,they also secrete it.
Now perhaps we can see a cause and effect relationship,wrong bacteria expresses excess phospholipasse, which hydrolyzes the PC in our mucus barrier,rendering it less hydrophobic, the bacteria then can pass through the mucus and contact the colon tissue,which sets up the immune cascade and tissue destruction.

If the above is true then antibiotics should work on UC, and there is some evedience that they do,also some evedience that colonic lavage also works.  I suspect that the bacteria are difficult to wipe out do to biofilms in the colon, this would protect the bacteria from the antibiotics. Perhaps lavage and antibiotics  might be effective. Has anyone ever felt better or thought there meds were working somewhat better after a colon prep. This effect may only last a short while.


Old Mike

Post Edited (Old Mike) : 11/5/2010 6:14:15 PM (GMT-6)

Posted 11/8/2010 12:04 AM (GMT 0)
I'm glad to see they're doing an expanded study. The original study listed a small sample size under "limitations."

Old Mike...you lost me a bit in your last post, it's been a while since I had any type of biology :)
So...you're basically saying this phospholipase makes the PC in the colon wall more hydrophillic (through hydrolysis?) which, in turn, makes it easier for bacteria to permeate through the PC barrier? Maybe flooding the rectum with excess PC and taking some of the supplements you suggested to inhibit the phospholipase would be a good tandem treatment.

Anyway, all this talk about coated capsules and such...what about an enema? I think I'm going to buy those 840mg softgels I linked to in the first post and add two to three of these to my Rowasa each night.
Posted 11/8/2010 12:20 AM (GMT 0)
Keep us posted, Levi..... this all sounds exciting!
Posted 11/8/2010 3:12 AM (GMT 0)

Levi said...
I'm glad to see they're doing an expanded study. The original study listed a small sample size under "limitations."

Old Mike...you lost me a bit in your last post, it's been a while since I had any type of biology :)
So...you're basically saying this phospholipase makes the PC in the colon wall more hydrophillic (through hydrolysis?) which, in turn, makes it easier for bacteria to permeate through the PC barrier? Maybe flooding the rectum with excess PC and taking some of the supplements you suggested to inhibit the phospholipase would be a good tandem treatment.

Anyway, all this talk about coated capsules and such...what about an enema? I think I'm going to buy those 840mg softgels I linked to in the first post and add two to three of these to my Rowasa each night.

Levi, make sure what is in them softgels is a liquid, it can be a thick waxy substance. I would recommend a liquid version if you can.
Posted 11/8/2010 5:07 AM (GMT 0)
I understood PC and Soy Lecithen to be synonymous and so when I saw 'Lecithin Liquid' at the vitamin cottage I thought about what Zippy123 was doing and how it might be a good addition to his experimentation I would love to hear that it is beneficial and I too agree that enema is the way to go since the flare begins at the very end of the GI tract. This is so because that is where the mucous membrane thins out, diminishes to regular skin which does not have the mucosal protection. This is reminded to me whenever I have too much stimulants and the colon purges before it has had a chance to do its job fully, what was not irritating within the colon is sensed as acidic and burning only as it is exiting the mucosal section and contacting regular skin. That signals me to halt all stims before things get out of control.
Posted 11/8/2010 2:44 PM (GMT 0)
Zippy-Why would you recommend liquid? I ask because I've already ordered them and I'm pretty sure it's a thick substance. If it's ease of use that makes you say use liquid I'll suck it up and use the thick ones I'm getting, if you're thinking it might not be as effective I might regroup.
Posted 11/8/2010 7:49 PM (GMT 0)
Levi, yeah I was thinking that you might not be able to use the thicker stuff in your enema. When I mean thick I mean it is like almost a wax consistency, or at least the one bottle of lecthin I got was like that inside the capsules.
Posted 11/8/2010 10:22 PM (GMT 0)
Levi: Yes that is what I am saying,the bacterial penetration of the mucus barrier depends on the electrostatic repulsion,high hydrophobisity,and viscosity of the mucus. If the mucus becomes less hydrophobic then the bacteria can penetrate to the colon wall. I also suspect all of the detergents and emulsifiers we ingest with our food,toothpaste,residue on clean dishes/pots and pans also does not help. In addition when PL acts on PC then arachidonic acid is formed which also leads to an immune cascade.
We had a big discussion on this couple years ago, and I posted some good studies of what is going on with the mucus barrier,perhaps they are stil on the site in one of the old threads.

Also interesting to note that steroids inhibit PL.  I believe all this is tied together, note sure why the research doc's have not figured out UC yet,since the PC studies are starting them right in the face.  They seem to go off after the fact looking at the immune cascade when it is already too late, they should be looking at the primary cause in the breakdown of the mucus which initiates the immune cascade.

Remember when you get sick and feel awful with a virus, well the virus gets kill pretty fast, you feel sick from the immune cascade.  Brings up another point that UC may also be an immune cascade that will not shut down.
Old Mike

Post Edited (Old Mike) : 11/8/2010 3:34:51 PM (GMT-7)

Posted 11/9/2010 1:11 AM (GMT 0)
Hi Levi,

I have got great results by doing lecithin enema in my my last two flare-ups. After some experimentation, the best protocol for me seems to be to mix 1 scoop of Whole Food soy lecithin granules (consists of about 3.5 gram PC) with filtered water in an emptied CVS disposable enema bottle. This dosage of PC is about twice of what German researchers are using in the retarded release formulation. I did the enema last thing in the evening and had no problem retaining it until morning. Don't expect fast results -- it will take at least four weeks to see improvement. I followed the research protocol of continuing with enema for three months.

I was in remission for four years. Had a setback this summer which lasted for four months. But PC enema got me out of the flare when my Dr was pushing for steroids which I don't like. But everyone is different -- I can tolerate a lot of symptoms (blood, urgency, etc) without panicking into heavy-duty drugs.

For maintenance, I am taking 1 Tablespoon psillium husk poweder mixed with 1 scoop Whole Foods lecithin granules on empty stomach orally every night before I go to bed -- don't eat anything afterwards. (I don't do enema anymore.) The idea is to use psillium powder to speed up the transit time though the GI system and minimize the absorption of lecithin in the small intestine. I can see in my stool in the morning that this indeed results in some lecithin getting to my colon.

Anyway good luck to you. I don't visit this site very often so if you have any question feel free to email me.
Posted 11/9/2010 1:19 AM (GMT 0)
By the way pure phospahtidylchole supplements (such as Phoschol) are really irritating because of alcohol so I would avoid them. I tried it and it lead to profuse bleeding for a couple of days. Another thing is that the researchers are using lecithin and not pure PC. They suspect that it is PC which is doing the trick but we don't know for sure. So I would stick with lecithin granules which contain PC, PE, and some other phospholipids.

Also taking Phoschol or any other Lecithin supplemet orally won't do anything as virtually all of it gets absorbed before reaching the colon.
Posted 11/9/2010 10:24 AM (GMT 0)
sakiv46,
Thanks for the post, very interesting. How limited is your UC? Do you have a link to the enema protocol you referred to (the one lasting three months)? I'm considering retrying this with my daughter. I was worried about the ethynol in the phoscol. Do you think any pure lecithin granules would be okay?
Posted 11/9/2010 5:45 PM (GMT 0)
killcolitis,

The research protocol I was referring to is the trials in Germany where patients were given retarded release PC for 3 months. There is no enema protocol out there -- what I am describing is based on a lot of experiments on my own body!! Tried Phoschol, liquid lecithin in water and/or olive oil, and many other permutations and combinations.

My UC is limited to the left side. If your daughter has more extensive UC, you may want to combine enema with oral supplementation (psyllium mixed with lecithin granules on empty stomach). Any pure lecithin granule brand should be ok. I prefer the one from Whole Foods because it is non-GMO and lists the amount of PC per dosage. It is pretty cheap -- $15 for a one month supply.
Posted 11/9/2010 5:56 PM (GMT 0)
Great thanks! My husband is out buying some right now.
Posted 11/9/2010 8:47 PM (GMT 0)
Reading through their 2001 patent they recommend 5-20 grams PC/Lecithin per 100 ml of soybean oil. They do not specify liquid or solid lecithin/PC they also use PC and lecithin to mean the same thing. This of course is for an emema.
This would probably only help distal UC,but if it works who knows,UC starts in the rectum.
Old Mike
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