Missing PC Main Pathogenic Factor in UC

Also, they said they've seen about a 75% response rate too and they've had good feeback (I guess they would say that but...)

Levi, I used pure PC twice and it produced good results for me. There were 2 problems: 1) it is a very strong irritant and ended up with a bad burn and pain and 2) my mixture (PC from capsules + water + soy lecithin + slippery elm powder to make it semi-liquid) was not reaching high enough. I ordered some very thin syringes to experiment if I can cover more inflammation. A regular enema bottle didn't work for me, because PC is very viscous and heavy and would deposit at the bottom of the bottle. It's also soluble in alcohol types only.
There's a new raw sunflower lecithin on the market that looks easier to use and it's also higher in PC than the soy one.
So, after using it twice, I went from a very bad flare (20+ times) to manageable (3-4 times, formed but still with blood).
Killcolitis, I have 3 GIs, all in different practices - I'll see if any of them is willing to write a prescription.

Well, I have emailed KliniPharm in Germany and will follow up with a telephone call when, as I fully expect, they ignore it (I don't know what it is about compounding pharmacies and emails but they seem to just go into their spam boxes.) In other news, I mixed up some lecithin granules with water and it dissolves well at room temperature... so i think I am all set to start experimenting with enemas. However, my inflammation - certainly my pain- is mostly deeper up in the colon and I don't think enemas will remotely reach up there, so I really am hoping we can get these rPC capsules through this Frankfurt outfit.

PS- wolfed down a few tablespoons of lecithin granules with a bit of yogurt and it actually tastes kind of nice... lol.  However, I know that straight oral ingestion is of no value for UC.

Post Edited (Probiotic) : 12/9/2010 9:47:02 AM (GMT-7)

So, the pharmacy send out our order and we'll receive it on Monday. Is anyone else going to try it? In the past we've found oral ppc (phoschol) fine - not really helpful nor irritating, and lecithin and phoschol enemas irritating. I'm a little scared to try this based on our enema experience. ?

Alba, keep us updated? I'm very curious to see how this works. My daugther's very sensitive to everything at the moment (food, meds, supplements) so we'll have to think about how to introduce this and when.

Killcolitis-- maybe I missed this, but did you need a prescription to get the frankfurt pharmacy to compound this for you? If so, what was the prescription for specifically?

We got the package yesterday. Basically they are clear regular capsules with the granules inside. The granules have been enteric coated apparenty (we called the pharmacy to double check) in the same manner as the Heidelburg study. Don't know when we'll start it, but will keep you posted if we do.

killcolitis- very exciting.  I emailed the pharmacy and they ignored it or sent it to the spam box.  I was just about to call and try out my rusty German- did they accept a US or non-German prescription I take it? (My alternative MD will certainly provide me with one I am sure).   I am gung ho to place an order and it's very encouraging to hear this went through ok for you.

sakiv46
here are the details:

KliniPharmKliniPharmhttp://maps.google.com/?cid=14471095566723145611s=5169304104120754595
Pagina Indirizzo
Eschenheimer Tor 18
60318 Frankfurt am Main, Germania
069 288212

Yes, you do need a prescription - a friend wrote us one - but if you have no way of getting one you might just tell the pharmacist, they're pretty accommodating and it is a food after all.

Thanks killcolitis.

Delarge: I have read most of the original papers on this topic, as I have access to most of the medical journals at my work.

You are right -- the German researchers have never claimed that lack of PC is THE cause of UC. Like everyone else, they really don't know what causes UC but they have demonstrated very convincingly that PC concentration gets severely depleted in the UC patients. And PC forms a hydrophobic surface that helps in keeping a delicate separation between the colon content and the surrounding immune cells.

So their therapy is sort of a mechanical fix. Strengthen the PC layer to enhance this separation and the immune system stops overreacting, since it sees no threat. Even if we may have to supplement for ever, it is a much better therapy without any known side effects and any risk of losing efficacy over time.

In contrast, the usual approach relies on immune suppressing drugs that have awful side-effects and seem to become less effective over time for most patients.

All this theory aside, lecithin supplementation (via enema) has kept me in remission more or less continuously for last four and half years.

Hi Levi,

I have never tried mixing lecithin with Rowasa. Without knowing about all the possible interactions, I would be inclined not to experiment with it. If I were you, I would start with lecithin enema on the alternate days when you don't do Rowasa. And see how it goes.

I am having trouble figuring out how this might be working in emema form.
Lechitin/PC is only slightly soluble in water it is fat/veggie oil soluble. This being true then you have granuals of lechitin sitting in your lower colon/rectum. If there is any fat pr possible bile salts around then it might help to dissolve it, whether it dissolves in mucus is unknown by me. The article at the start of the thread indicates that PC does not intigrate into the mucus,I suspect this is due to solubility.
I am not sure how they tested pc solubility in mucuc,perhaps they just tried to mix it with bowel mucus, outside the body,perhaps in the body its solubility is increased.

This brings up another point where the enteric coated lechitin would appear to dissolve in the chime when released into the distal ileum,so how is it doing this.

More interesting info is that in their 04 patent they indicate the use of enemas as an application method.
Old Mike

Post Edited (Old Mike) : 12/21/2010 12:34:09 PM (GMT-7)

Probiotic: Perhaps you have a hydrolyzed lecithin,since part of the fatty end of the molecule is removed it would tend to be more water soluble, but I suspect may not work as well in this application,since then it would not make the mucus as hydrophobic as normal lecithin.  In fact if it dissolves in water then really, do not believe it will work at all.
If you look into it there is perhaps something wrong with our MDR3 gene,which is a PC transporter.
http://en.wikipedia.org/wiki/Lecithin
Old Mike

Post Edited (Old Mike) : 12/21/2010 1:30:00 PM (GMT-7)