omg... NEW treatment... IT WORKED!!!

These are prescription meds, right? Thanks.

I got mine filled according to the study, I guess I should have waited to see what yours was. I was on tetracycline for a long time for acne, I wonder if that is what prevented me from developing colitis in high school. Who knows, my regime is:

Flagyl 250 mg times a day
tetracycline 500 mg times a day
amoxicillin 500 mg 3 times a day

I wonder if I am taking to much tetracycline?

Also admins please dont delete this thread, just delete the offending responses, thanks

I was just on Amoxicilling and flagy a few months ago, and it helped, but not enough to do it again. I am hoping that the tetracycline will do the trick.

quincy said...

UCinGV said...

quincy said...

The f.varium is in all our gastro/respiratory/genito tracts living quite cohesively and quietly. Interesting, however the UC/fv connection. It does say a high percentage of UCers with active disease have it.

So you're saying everyone has f. varium in them? If so, then of course UC sufferers would have f. varium, because everyone does.

Or am I misunderstanding?




Hi...I was too general in my statement..I should have said fusobacterium species. I found some good info on both, one especially that lists the different names of fusobacterium varium.



It seems a high percentage of UCers have a high count of F.Varium when in active disease state. I don't know if it's in those who are in remission..I have to do the reading.



The most interesting point is the fusobacterium and production of butyrate.. So, Horus or whoever else talks about butyrate...hope you'll come on and clarify some of the scientific aspects of this.



http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=17464938



http://www.exactantigen.com/taxonomy/bacteria/f/fusobacterium-varium.html



http://www.freepatentsonline.com/20020187152.html



q

The difference is that F Varium and this study were done in japan and on japanese people that have a different genetic makeup than we do. Do you know how many asians lack the ability to metabolize alcohol? It's huge. The bacteria that they think in japan that might cause colitis might not cause colitis in the US or in Mexico. Ever hear of travelers diarrhea? It's because bacteria you pick up as you travel have different effects on genetically different people. People from mexico get travelers diarrhea when they come here. We get it when we go there. Yet this same bacteria has no affect on the local population. When you grow up with certain bacteria you body adjusts to it. The extreme version of this is that genetics has probably a lot more to do with it than anything else. As an example, why didn't everyone who lives with these people also get UC? Certainly they were exposed eventually to the same bacteria. The reason why everyone around those with UC doesn't get UC even though they are exposed to the same bacteria is because the individual with UC is genetically predisposed to react in a negative way to the byproducts or actions of certain these bacteria whereas others have no reaction. It just so happens that F Varium secretes butyrate. So? To implicate butyrate as a cause of UC is completely ridiculous and goes against a MOUNTAIN of established research of the BENEFITS of butyrate such as:

http://www.ingentaconnect.com/content/tandf/sgas/2002/00000037/00000004/art00014

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15777254&ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=15361484

http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&cmd=Retrieve&list_uids=12641543

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=7851194&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10795763&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=14512034&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12480096&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12421838&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=11099058&ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

I could go on and on with this. One study even tries to quantify the reaction of butyrate as a consequence rather than cause of healing using butyrate generated by resistant starches. If it's a consequence then what why does the healing occur with resistant starch included in the diet?

http://jn.nutrition.org/cgi/content/abstract/134/3/493

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12637250&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus



So please people do a little research before everyone goes bonkers about trying to show that butyrate somehow causes UC lesions. As you can see
this is not the case in a lot of studies. I myself have even employed the use of butyrate enemas, however I never got better on them. I didn't get noticeably worse on them and I didn't start any new bleeding on them. I just didn't like how they sting. I wanted to be able to adjust the PH but never got around to going that far. Now supposedly the butyrate you buy is different from the butyrate you create in the colon. Fine. I'll try psyllium husk for butyrate production. I've been on that for a long long time and have never been out of remission since then. It didn't single handedly induce my remission. But I clearly didn't get worse because of it. From the report that quincy points out, I'd be in a full flare by now with the high amounts of butyrate I product daily. I ingest 50 grams of butyrate producing fiber a day. Clearly in my case butyrate doesn't cause lesions. I feel sorry for the people in japan that react so badly to butyrate for surely their future is wrought with colon cancer since butyrate is one of the main things the colon uses to resist cancer.

http://focus.hms.harvard.edu/1998/June19_1998/oncol.html

My guess would be it's a combo of the type of butyrate this F Varium bacteria is producing and the persons genetic susceptibility to tolerate it. Being allergic or intolerant to butyrate would be almost unthinkably bad. For those on the SCD diet they would probably hold up this F Varium as their Devil and rally around it as the cause of all things IBD and arrange their diets to avoid feeding such. And actually they do by avoiding the sugars that do feed this F Varium. But that hasn't worked out for everyone now has it. The reason why is because for those that don't respond well or at all to the SC Diet don't have any issues with butyrate. For according to the SC Diet I should be dead by now or had my colon out. I'm doing almost the opposite and have good reason to. But we know that actually the SC diet is actually better for those with crohns than UC. That's been admitted to by the author herself in her book. The reason why is because butyrate should be your priority, not something to avoid. If you happen to be one of the japanese genetic outter fringe poor souls that reacts poorly to butyrate, um, good luck with that. I'd imagine they loose their colons and suffer from very high rates of colon cancer. Incidently the japanese researchers point out that this F Varium bacteria are invasive and get inside the colon cells and there they secrete butyate. I'd imagine that is not where the body expects butyrate production to be and thus you get inflammation as well. This would be like swallowing these bacteria and having them colonize the stomach area where they start to produce large amounts of butyrate in an area of the digestive tract that isn't used to nor wants this amount of butyrate. location location location. It looks like they want us to also get the idea that too much butyrate is a bad thing. So is water. I'm sure there is a therapeutic range for such. At the 50 grams a day of butyrate producing starch I ingest, I feel great. And most of us here have injested psyllium husk and inulin without incident. I have more about this in another thread about fiber.

You'll also notice that these bacteria got through the mucus barrier. Does anyone need a refresher on the importance of the mucus barrier?


And this bacteria is only 1 of a few others that they've shown give suseptibility to colitic type lesions. Antibiotics don't completely cure this condition. There are other elements. If UC were like c difficle I think we'd know that by now as so many combinations of antibiotics have been tried on it. Sure there are the few reports here and there but RARELY do you hear of long term success of antibiotics. If only that were true. Yet for 50 years they have tried every antibiotic known to man against IBD and nothing has worked long term in this category for many people. Those are the facts. Don't want to sugar coat it. Just don't be so dissappointed WHEN your symptoms come back. Even for those that KNOW their colitis is caused by bacteria, they have a fairly high relapse rate even with the correct antibiotic. Guess who isn't paying attention to the mucus barrier? Need I remind you it's NORMAL for people to harbor c difficile and other potentially harmful bacteria in their colons WITHOUT any sort of symptoms because of a properly functioning mucus barrier that can keep it from doing bad things. Now if you take antibiotics that are wiping out these bacteria in mass numbers with multiple wide spectrum antibiotics, how is that different from having a properly functioning mucus barrier in the colon that keeps the body ignorant of its bowel contents?

Post Edited (Horus) : 10/6/2007 1:07:39 AM (GMT-6)

omg... horus... thanx for the kick in the guts.

just cuz your miserable doesnt mean you have to put a damper on everyone else.

im sorry that i am exuberantly happy to finally have remission after 7 months of hell and 3 months just before that. i didnt get out of bed for 4 months and i lost 30 lbs and look anorexic not to mention the multiple bouts of anemia and constant pain.  so excuse me for being stoked.

and... if you would have read my other post, you would have noticed that i said:

THIS IS 'NOT' A CURE... but a TREATMENT that works for some.

i even went on to say that not everything works for everyone.

maybe you should actually read everything before you throw your 2 cents in thanx.

and keep your TEMPORARY crap to yourself.

and everyone else.... THANK YOU for your support.

im just happy to have some relief and wanted to share it with others with this disease.

and yes horus i do know a lot about UC and different treatments and such, so stop assuming that you know everything and nobody else knows anything.

again, good luck to everyone and if you try this and it works, then more power to ya. if it doesnt work, dont lose hope cuz something hopefully, eventually will work.  it finally did for me.

xxx

ps--- still going goood. no pain or UC symptoms at all.  will keep ya posted. 

 

kazygirl said...
omg... horus... thanx for the kick in the guts.


just cuz your miserable doesnt mean you have to put a damper on everyone else.

im sorry that i am exuberantly happy to finally have remission after 7 months of hell and 3 months just before that. i didnt get out of bed for 4 months and i lost 30 lbs and look anorexic not to mention the multiple bouts of anemia and constant pain. so excuse me for being stoked.



...]if you would have read my other post, you would have noticed that i said:



THIS IS 'NOT' A CURE... but a TREATMENT that works for some.

i even went on to say that not everything works for everyone.



maybe you should actually read everything before you throw your 2 cents in thanx.

and keep your TEMPORARY crap to yourself.



and everyone else.... THANK YOU for your support.

im just happy to have some relief and wanted to share it with others with this disease.

and yes horus i do know a lot about UC and different treatments and such, so stop assuming that you know everything and nobody else knows anything.



again, good luck to everyone and if you try this and it works, then more power to ya. if it doesnt work, dont lose hope cuz something hopefully, eventually will work. it finally did for me.



xxx



ps--- still going goood. no pain or UC symptoms at all. will keep ya posted. [img]/community/emoticons/tongue.gif[/img]

I did read your posts and that is why I take issue with your blanket statements. Already I see 2-3 people that posted that are trying this based soley on just your recommendation. No where do I see a discussion on the repercussions of broadspectrum antibiotics, c difficile, and side effects of flagyl which all can be serious. What you propose shouldn't be taken so care free without some serious thought and research. Besides you recommend this to everyone. Here are your quotes, "i urge you all to try it. so far it has worked for all of my doctor's UC patients.
its worth a try. 2 weeks of antibiotics to be free of this pain and suffering. (AND) ...so, once again, good luck and i hope you all at least try it... cuz what if it works???"

I'm here to say No we all shouldn't try this and I'm telling you why. If that rains on your parade that's not my intention. I'm not here to ruin your celebration. I'm here to inject some rational questions and thoughts into an otherwise incomplete view of the benefits of trying antibiotics. I'ma straight shooter and think others would appreciate some straight talk without the candy coating from someone that has had IBD for a decade and if that saves someone from c difficile or permanent nerve damage so be it.

No offense to kazygirl or anyone in this thread, but I am glad Horus posted what he did....it didn't have to be in that tone, but I want the facts and he is supplying them.

kazygirl - I am glad that this has worked for you so far.

well, all i was trying to get across is what worked for me and i gave the details and said ask your doctor. there is no harm in that.
everyone else writes about bee propolis or vsl#3 or whatever other meds, and they dont get crapped on. and many people try these things or ask their doctors based on forum topics here. why is this any different? it might be something someone hasnt heard about and could ask their doctor. why shouldnt someone find out new information and act upon it intelligently?

im not suggesting this to be a "carefree" decision.
im not prescribing anything.
i didnt say i gave facts or evidence.
i just was stating what worked for me.

and i did mention a number of times that not all treatments work for everyone as everyone is different and there are different causes of UC.
im not here saying this is a cure either.

i just got excited and wanted to share my news.

thank you for supplying all those facts, i am sure there are many more... but you didnt have to be rude.

Let me add on to what I was trying to say earlier. We should all post when we have a opinion postive or negative on a topic. I just wish we could all keep our tone nice and recognize we might all not always agree.

I was thinking that as well. Normally what happens if somebody posts something that could be of use and gets a lot of attention, horus(researcher) will post how it doesnt work.
He does this on other boards. I wish you could just post your info without the attitude, then nobody would have any problems with your opinions.

Okay, okay! I've asked the admin to lock the thread.

To Delarge.

It is common to use the term butyrate and butyric acid interchangeably. Notice the TITLE of the research paper. It uses the term BUTYRATE- NOT BUTYRIC ACID.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=17464938


Here is an example in a research paper and patent application.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1435864

http://www.patentstorm.us/patents/5858365.html


It would be helpful if you cared to put up some sort of research to backup your guesses. Really the paper in question brought up some interesting points about just how much butyrate
is tolerable, where it causes inflammation, are there genetically suseptible people that don't react well to butyrate, and in your case-does butyrate and butyric acid distinction make all the
difference here? Plus F Varium is an invasive species and that in itself will cause inflammation irrespective of butyrate. F Varium also causes antibodies to form and how much of that leads
to inflammation?

Here is a research paper that shows butyric acid is low in people with IBD.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17897884&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum


I don't think the book is shut yet on butyrate and I don't seem to be affected by high amounts of it. Does the distinction between butyric acid and butyrate here mean anything? I doubt it based on what I've found. Is it prudent to think their might be an acceptable upper limit to butyrate? Probably. BUt all the research I've found points to butyrate being good for UC. This whole thing about butyric acid causing UC lesions used seriously high levels of butyric acid to induce these changes, much higher than you'd normally find in a diet. Think of all the people in india that are mainly vegetarian and all the Mexicans that eat mainly beans as a staple of their diet. And what do we find? That UC is drastically lower in these 3rd world countries that have beans and casava flour as mainstays of their diet. If butyrate caused problems these people would have figured that out LONG ago. And if you don't think genetics can play a part in UC try telling that to an Ashke**** Jew where autosomal recessive genetic diseases are common like UC. So maybe in this japanese population responding to butyrate poorly in higher concentrations than normally found in the diet, it produces lesions. They may just have a lower threshold of tolerance to it than everyone else, like alcohol.

Post Edited (Horus) : 10/6/2007 8:17:08 PM (GMT-6)