Could the initial mechanism of UC be this simple.

Because I have now failed: all 5ASAs oral and rectal; remicade; humira; TSO; human hookworm; human whipworm; azathioprine; entocort; retarded release phosphatidycholine; turmeric; fish oil; aloe vera; mutaflor; VSL3DS; Veggie, macrobiotic , SCD and paleo diets (tho paleo helps the most); acupuncture & herbs; homeopathy; DMSO; nicotine patches & smoking; spinach & sunflower seeds; the list goes on and on.... Only thing that works on me like a charm is good ol prednisone. I'll be honest- I am lprepared to use pred 5 mg and below forever as a maintenance drug if that's what it woukd take... Alas even on that dose I flare up too much and need more.. So I think its over for me. But I am trying to see who jumps first, me or somedude- game if chicken, lol.

Post Edited (Probiotic) : 3/13/2013 5:15:03 PM (GMT-6)

freddyj said...
Anyone see this on mannatech?

blog.glyconutrientsreference.com/?p=13

Only way to know is to try it.

I see they use search engine optimization - aggressive marketing group yet people continue to say it helps them.

Australian Gov’t Awards 10 Million Dollar Grant

The Australian government recently awarded Dr. Talitha Best a 12-month Researchers in Business (RiB) grant to help develop research on Mannatech’s glyconutritional products and to promote Australian research innovation.

freddyj said...
But are those "people" legit? Plies of anonymous anecdotes on the web is essentially trash. Just saying. They could be real people who have tried this, from all walks of life, or it could be, as you say aggressive marketing. As far as I can tell, its not discussed widely on the web, but focused in a few places and "blogs". Dont get me wrong, I want it to work.

I suppose without corroboration the grant is real.

Everything else could be social engineering as you point out.

Read this,on glyconutrient sham.
They were being discussed on UC forums 10-15 years ago as I remember.
Old Mike
http://glycob.oxfordjournals.org/content/18/9/652.full

My GI told me because most health food or supplement does not list all ingredients, nor tested by FDA or government entities, I better be responsible and ask the doctor first before ingesting any supplement especially for UCer. He told me to bring the supplement for his review before ingesting so that I wont risk myself for the possible flare.

This supplement is obviously a scam...

franny: No we think it is bogus.Om

Franny If your son has AS, Is he also HLA-B27 positive?

www.discoverymedicine.com/Taha-Rashid/2011/09/12/gut-mediated-and-hla-b27-associated-arthritis-an-emphasis-on-ankylosing-spondylitis-and-crohns-disease-with-a-proposal-for-the-use-of-new-treatment

Yes, he is HLA B27 positive.

Old Mike,

Thanks for the thread.

We know that Dextran Sulfate (DSS) destroys the mucous layer and starts ulcerative colitis. Do we know what encourages restoration of the mucous layer? We haphazardly use probiotics in the hope that it restores mucous but is there any hard information?

Franny, Things to think about:

Antibiotics (look at natural too as a maintenance regimen, cause that means he could take them long term.. I dont know what is active against Kielbasa but I feel that Collodial, oregano oil, cinnamon oil and lauricidin/monolaurin are effective for MAP.. do this after antibiotics.. Dont just start supplementing because you could break open a disease state. (or atleast be aware of that being what you might do and stay the course, not just willy nilly supplementing with one thing one week and one the next. The ABX gets the infection down and then your body can kick in with some support from these things..)
Low starch diet ( I know this is hard at 21 - maybe you can look at Supplementing Amylase to atleast get some of the starch away from the bacteria? Its awesome that he is gluten free. Maybe he could work on sugars.. sugars are the one we all have the hardest time with, but they feed the bacteria so much. Its better for a non celiac, even gluten intolerant, to eat gluten then sugar.)

Does he have the MTHFR mutations too?


Is he actively seeing blood in the toilet? I ask because of the iron issues.. Id be very hesitant to believe that about the Colon taking away the AS.. The only way I would believe that is if they were hitting him super duper hard with the antibiotics long term to make sure they had eradicated all infection and then really focused on supporting his pathways. Because he is HLA B27, it will be a challenge for him. Its gonna be easier for him to fight it with his colon, if he can.

Post Edited (PathogenKiller) : 3/16/2013 10:00:46 AM (GMT-6)

Im totally not saying to give him ABX now. but if he flared, because we know AS is linked to HLA-B27 and that they respond very strongly to Kielbasa, etc they are something worth trying. Sometimes the bacteria will flare up and you have to beat it back down. Its hard to beat it back down quickly with diet, so sometimes abx might help.

Does he get tonsillitis alot? Do you know which abx upset him?

The mthfr mutations basically make it such that when you try to process any toxins or kill off whatever pathogen is killing you they poison you. You are unable to detox so it totally overburdens your system and makes you susceptible to new pathogens, more virulence to the existing pathogens, etc. It also prevents your body from holding it Nitrogen in the right balance so there is always too much or too little which can then feed Kielbasa no matter how low starch your diet is.

How wonderful that you guys are able to manage it right now and that he is willing to comply with the diet. If he can wrap his mind around low starch he might be even better.. can you get him pumped about Paleo? All the young whippersnappers are doing it ;)

My Rhematologist just ran the test through labcorp. Which is great, but research it.. "treatment" is simply giving b vitamins/folate in the right balance so its pretty cheap to just treat and as of yet Ive found nothing negative to taking b vitamins that you may or may not need ;)