I would also like to view the video but can't get the links to work. Does anyone have another suggestion on how to access this Video?Tyler, why are all the links to the videos not working?
Tyler I have not been able to link to any of these videos. Would it be possible for you to send me a copy?Hi everyone, my name is Tyler Wilson and I created a video testimonial of my experience using QBECO SSI therapy for Crohn's Disease. It has changed my life and I wanted to share my story with you: http://www.youtube.com/watch?v=kC_OM8O5Y4w
2 other participants in the trial also shared their experiences. Here are the links to their videos:
Natalia: http://www.youtube.com/watch?v=P-rd5zYEFU8
Colleen: https://www.youtube.com/watch?v=EjvDkduWZxE
I hope this helps,
Tyler
Thx for posting, have you looked into anti-map therapy?Hi,
I read this thread with very much interest but I'm not going to take part at this trial (I would like to but I live in Germany) because I believe that there is a similar treatment in Germany which is called autovaccine. They take your stool samle and isolate non pathogen e.coli from it. Then this bacteria is killed and can be injected under your skin in different dosages.
The only difference with the trial is that e.coli from your stool is used (in my understanding). I am going to try this in around two weeks cause they need some time here to make the e.coli culture grow.
My insurance doesn't pay for this but its only 100 $ for 2 months of therapy.
I hope this will work for me because I don't have any more therapy options left and the only thing that works for me is Vitamin D an B-vitamins. I tried immunesuppressive drugs and none of them could reduce my symptoms as much as Vitamin D did.
Here is a link which can give you some more info about autovaccine therapy:http://amt-herborn.de/amt/index.php?option=com_content&view=article&id=16&Itemid=0&lang=en
I would be glad to try it if this safer. where it is possible to obtains in DE? and what is the approach? what could side effect?Its not a clinique but there are a lot of doctors in Germany who will be ready to use auto vaccine for crohns if you ask them. Its quite the same method as in the QU trial. You get your vaccine which you have to inject subcutaneously twice a week. The dosage is raised until you get a local inflammantion reaction on your skin.
Still waiting for my vaccine to come.
Has there been any research testing the effectiveness of this approach?I will possibly recieve my vaccine in less than a week and then I will report.
Questions?
Confirmation Bias is very common in many fields. That's where independent verification comes into play....
Prof. Herman Taylor has an interest in pushing the MAP theory. How can he know how compromised the immune system is in every crohn's patient? Is there a method of measuring this parameter? However I like the idea of MAP as the cause of the disease and tried the tripple therapy which unfortunately didn't help me.
....
I don't think he is "pushing" the MAP theory, he just happens to have studied and treated Crohn's for 30+ years and makes a pretty compelling case that it is often the cause. Don't forget he has also studied and published about many other things including AIEC.Prof. Herman Taylor has an interest in pushing the MAP theory.
Qu has had good results with QBECO. I believe some people with Crohn's are dealing with AIEC w/o MAP.My point though was about killed bacteria vaccines (of any type) and whether they can help reprogramme the immune system to improve Crohn's. His answer was unequivocally that they do not work. Given they are easier to create than a T-cell vaccine, I am sure he would not have spent 15 years researching and creating the T-cell MAP vaccine if there was a much simpler and cheaper solution.
They are but I don't think SSI is a simple killed bacteria type vaccine. It will be interesting to see the results of the trial and whether the SSI vaccine alone can maintain long term remission.Qu has had good results with QBECO. I believe some people with Crohn's are dealing AIEC w/o MAP.
I'm pretty sure QBECO is just whole cells of AIEC strain LF82 that have been inactivated via gamma radiation. Since this information is sort of trade-secret, though, I doubt it will ever be officially confirmed.They are but I don't think SSI is a simple killed bacteria type vaccine. It will be interesting to see the results of the trial and whether the SSI vaccine alone can maintain long term remission.
QU biologics say that it is a deactivated e.coli strain.They are but I don't think SSI is a simple killed bacteria type vaccine. It will be interesting to see the results of the trial and whether the SSI vaccine alone can maintain long term remission.
Sure, but it is probably a protein sub-unit vaccine, rather than just killed AIECQU biologics say that it is a deactivated e.coli strain.
Maybe they kill them in an extra brutal way :hallo3:.
"components of inactivated bacteria" can mean very different things. I cannot evaluate how this differs from killed e.coli from your own stool.Sure, but it is probably a protein sub-unit vaccine, rather than just killed AIEC
It's in the quote above from their websiteWhy do you think so? Do you have some insider information or is it pure intuition?
What are they doing?The website obfuscates what they are doing to deter competitors.
The patent is better at explaining their technology than the website, but I think you will find it sorely lacking details. I actually am quite surprised they were issued a patent based on such a vague description. That said, I have a deep respect for Dr. Hal Gunn and his work, so I am glad the patent was issued and wish them the best of luck.Their patent filing, though not specific to SSI for IBD, gets into some of the details.
What is epd therapy?Maybe I should also try the epd therapy.
Qu has been offering QBECO to US residents for most of the duration of their Crohn's trial, and I believe they will continue that trend for the ulcerative colitis trial as well.Wondering when trials will start in the lower 48. Or will that data transfer to an FDA application?
Good to know. Very interested in this. So long as I don't have to go to B.C.Qu has been offering QBECO to US residents for most of the duration of their Crohn's trial, and I believe they will continue that trend for the ulcerative colitis trial as well.
You have to go to Qu for an orientation to the trial, where I'm guessing they run some tests and teach you how to administer the SSI. I believe the travel is paid for via a stipend from Qu.Good to know. Very interested in this. So long as I don't have to go to B.C.
Thank you for the explanation. I hope the autovaccine works for you. Please keep us updated on your progress - I think lots of us are very interested."epd" is just the european name for "lda" which means low dose allergen therapy. A package of very low dosed potentially allergenic substances is injected under your skin.
I decided to try this only after failing the vaccine.
I hope that I wont have to try this.
This is great - I checked their website and it said tbe results for 6 out of 8 was complete remission. I wod love to see the science behind it...Can anyone see how it should work for crohns? What do they target - a particular bacteria?
I think - just my two scents that the umbrella of crohn's has many different causes, that is why some respond better than others. The way that it manifests itself is the same. When you are sick - you body has a fever to try to kill off an infection which can be a bunch of different things, but he body reacts the same way. I think maybe in your case, although MAP may be a possibility (did you consider trying to mlre than 3 months), maybe it is another pathogen, I am not sure.Officially declared side effects are: redness and local inflammatory reaction at injection site and also 12-24 hour transient fever reaction. If the side effects occure then dosage is reduced.
Has there been any research testing the effectiveness of this approach?:
No, there are no studies as far as I know. I knew about this method for many years but didn't try it due to the abscence of studies. But then I found the information about QU trial and thought that the approach with autovaccine is pretty similar.
Here is an interesting link:
http://jem.rupress.org/content/206/9/1839.full
Prof. Herman Taylor has an interest in pushing the MAP theory. How can he know how compromised the immune system is in every crohn's patient? Is there a method of measuring this parameter? However I like the idea of MAP as the cause of the disease and tried the tripple therapy which unfortunately didn't help me.
I will probably get my vaccine at the end of the week.
Hi crohnatar, any update on your vaccine?Very interesting.
I agree - if you think about it, its good that he is pushing it even if he is - at least someone is working on a innovative way to look at it and not giving up. Even if SOME of the cases are resolved and I am positive they will be, that is a success, then perhaps the tide will turn on the common perception of let's treat symptoms not the cause. I mean, just having read Irishgirls case - in her case, if the MAP vaccine works as good as the antibiotics have been for her, which theoretically they should, I think she will be cured. Other's may have different causes, different bacteria, etc..so if that proves to be a success, maybe people will start looking at the problem differently.I don't think he is "pushing" the MAP theory, he just happens to have studied and treated Crohn's for 30+ years and makes a pretty compelling case that it is often the cause. Don't forget he has also studied and published about many other things including AIEC.
My point though was about killed bacteria vaccines (of any type) and whether they can help reprogramme the immune system to improve Crohn's. His answer was unequivocally that they do not work. Given they are easier to create than a T-cell vaccine, I am sure he would not have spent 15 years researching and creating the T-cell MAP vaccine if there was a much simpler and cheaper solution.
As I said previously though, I am always enthusiastic to see people try ideas out and eagerly await the results of your trial of this treatment.
Hi Crohninator - how long did you try the MAP therapy out of curiosity and you never saw any improvement at all?Hi,
I only know about work with the MAP vaccine and I didn't talk to him personally. So maybe this prof is right and maybe he is wrong. MAP-therapy didn't work for me.