Thought I would share this…SSI Vaccines

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Hello I'm very interested in this trial - I have filled out the form , spoke with a lovely lady on the phone and recieved the email for the checklist and longer forms by email last night. I do not have any questions about the trial itself more about the travel. I live in Connecticut and have never been to Canada - actually I have never traveled outside the U.S. The travel stipend is $3800 for my state. While I know this will not cover all my expenses I need to know about how much travel like this might cost. It would be 3 round trips from Ct to Vancouver Canada with a minimum stay of 15 days to a maximum stay of 21 days total. I have no idea how much trips like this may cost. Is $3800 even close to enough ? I really REALLY want to participate in this study but I have a daughter entering college next year and money is really tight. If anyone has a good estimate of travel cost for the few trips I would need to make PLEASE advise me . I would hate to have to pass up this opportunity . Thank You !
 
tylerthorndale said:
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
Click to expand...

Tyler I have not been able to link to any of these videos. Would it be possible for you to send me a copy?
 
Could anyone please help me get in contact with either Tyler Wilson, Natalia or Colleen who went through with this? It´s kinda urgent.
 
Hey Tyler Wilson here,
I am still in remission 3 years later!!! The trial is currently taking place in Vancouver and they are looking for patients. Pass the word. Lets try and get this out there to people because I know from 1st hand experience it really works.
 
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
 
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crohninator said:
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
Click to expand...

Thx for posting, have you looked into anti-map therapy?
 
I did anti-Map therapy with 3 Antibiotics for 3 months. It didn't help. I did hookworm therapy, tso therapy, chinese medicine, flagyl, doxycyclin, total parenteral nutrition, immunesuppreessants, anti candida therapy, different diets, LDN. Hope, I didn't forget something.

The only thing that really helps me is Vitamin D and additionaly active forms of b-vitamins.

On these things I am far away from good condition but I could reduce my constant prednisone dosage from 30 to 10 or even less mg. And my bowel movements are solid and I visit the bathroom once or twice daily. Before I started vitamin D (I take around 25000 i.U daily. Consult your doctor before taking such high doses!!!) I had watery diarrhea 20 times daily before starting vit. D

My problem is that I still cannot tolerate food, I still have severe fatigue and I am heavily underweight...
I believe that if your only problem with crohns is diarrhea vitamin D in combi with (activated) B vitamins may help.
 
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.
 
If crohninator posted about Autoinoculation then I will tell about experiments. I tried Filgrastim. it was injections that I agreed with my doctor. Every week by one injection (toll 4 weeks) and then injection every 4 week, (total two).

about Firgastim, that is also based on E. Coli. http://www.drugs.com/cdi/filgrastim.html
https://en.wikipedia.org/wiki/Filgrastim

Filgrastim is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes;[1] it is a pharmaceutical analog of naturally occurring G-CSF. It is produced by recombinant DNA technology. The gene for human granulocyte colony-stimulating factor is inserted into the genetic material of Escherichia coli. The G-CSF then produced by E. coli is different from G-CSF naturally made in humans.

P.S. I am not doing any advertising with this post.
 
crohninator said:
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.
Click to expand...

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?
 
Well, I was able to obtain it from a doctor here in Dortmund. Visit cost was 50 euro. This was the official part. I came in and told her that I would like to try it for my crohns. After some general bla bla bla:) she gave me her o.k. and I was given a container for a stool sample. I sent this to the lab and now waiting for my injectible vaccine.
Costs for injectible vaccine: 100 euro for around 2 months or maybe more.

E. coli bacteria is extracted from your stool sample and after around 3-4 weeks you get your vaccine with your own dead e.coli bacteria. You inject these dead bacteria twice weekly and steadily increase the dosage.
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.
I will possibly recieve my vaccine in less than a week and then I will report.
Questions?
 
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crohninator said:
I will possibly recieve my vaccine in less than a week and then I will report.
Questions?
Click to expand...

Has there been any research testing the effectiveness of this approach?

From conversations I have had with Prof John Hermon-Taylor in the past, I do not believe killed bacteria vaccines work because the immune deficiencies which are typical in Crohn's mean that you immune system cannot be easily trained to recognise and eliminate these pathogens.

Good luck and let us know how you get on.
 
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.
 
crohninator said:
...
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.
....
Click to expand...

Confirmation Bias is very common in many fields. That's where independent verification comes into play.
 
crohninator said:
Prof. Herman Taylor has an interest in pushing the MAP theory.
Click to expand...

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,

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.
 
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JMC said:
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.
Click to expand...

Qu has had good results with QBECO. I believe some people with Crohn's are dealing with AIEC w/o MAP.
 
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ppk said:
Qu has had good results with QBECO. I believe some people with Crohn's are dealing AIEC w/o MAP.
Click to expand...

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.
 
JMC said:
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.
Click to expand...

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.
 
JMC said:
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.
Click to expand...

QU biologics say that it is a deactivated e.coli strain.
Maybe they kill them in an extra brutal way :hallo3:.
 
From the Qu Biologics website:
"Each SSI contains components of inactivated bacteria from a single bacterial species that is a common cause of infection in the targeted organ or tissue, for example, the gastrointestinal tract"

I find what they write about very exciting as it is clearly describes what I believe is the most advanced and complete understanding of Crohn's giving me hope that their product may work:

"Crohn’s disease and ulcerative colitis are a result of a defective immune response in the gastrointestinal tract, leading to chronic inflammation. There are two important arms of the body’s immune system – the innate immune system and the adaptive immune system. Current treatments for Crohn’s disease and ulcerative colitis suppress the adaptive immune system, but these treatments are not curative, which means that most patients will have the disease and be on treatment for the rest of their lives. And these treatments benefit only a portion of patients and can have serious side effects.
Qu Biologics’ scientific team is exploring the treatment of Crohn’s disease and ulcerative colitis in an entirely different way – by restoring the normal function of the innate immune system to resolve what may be the underlying trigger for these diseases. There is growing evidence that a defect / deficiency / immunosuppression of the innate immune system may underlie IBD. There are several hundred gene abnormalities associated with IBD that increase the risk for these diseases, many of which are associated with reduced innate immune system function and, specifically, reduced ability of the innate immune system to optimally clear bacterial infection1,2. Monocytes and macrophages are important sentinel cells of the innate immune system. The monocytes of people with active Crohn’s disease are unproductively immunosuppressive, resulting in an inability to clear bacterial infection in the gastrointestinal tract, leading to invasion of the mucosal lining of the g.i. tract with multiple pathogenic species3–5. Read more about monocyte and macrophage function in inflammatory bowel disease.
Substantial new data supports the concept that IBD is the result of ongoing chronic infection in the gastrointestinal mucosa with multiple pathogenic bacterial species6,7. The adaptive immune system reacts against this chronic infection, resulting in further inflammation, tissue damage and symptoms, but without the support of a normally functioning innate immune system, the over reactive adaptive immune system is unable to clear the chronic infection. Rather than suppressing the adaptive immune response, which further impairs the normal functioning of the immune system, Qu Biologics’ SSIs are designed to recruit activated immunocompetent macrophages to the gastrointestinal tract, restoring normal innate immune response and clearing the chronic infection. Qu Biologics hypothesizes that once this chronic infection is cleared, the over reactive adaptive immune response and inflammation associated with it may resolve, and sustained remission off all medications may be achievable. The data from the small number of patients treated to date in our compassionate use program suggests that this may be possible in a portion of patients."
 
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JMC said:
Sure, but it is probably a protein sub-unit vaccine, rather than just killed AIEC
Click to expand...

"components of inactivated bacteria" can mean very different things. I cannot evaluate how this differs from killed e.coli from your own stool.
They don't tell you much about what this vaccine exactly is.
 
For example it can mean that they thermally destroy this bacteria and then use their parts in the vaccine. Or it can mean smth. which is more complicated.
 
xeridea said:
Their patent filing, though not specific to SSI for IBD, gets into some of the details.
Click to expand...

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.

perfectjelly, I am not 100% certain what they are doing because it is not disclosed anywhere, including the patent, but based on all of my research I believe that QBECO is a whole-killed AIEC (adherent-invasive Escherichia coli) bacterin, i.e. vaccine, preparation. This product has many beneficial effects for Crohn's sufferers, as it does generally stimulate the immune system. There are localized effects, with the ratio of M1 to M2 macrophages shifting to an M1-dominated one. This helps patients clear persistent bacterial infections.

Now, it has been shown that AIEC are one of the most virulent bacteria seen in Crohn's disease. It has been suggested that AIEC cause Crohn's, but the truth is probably more complicated. Dysbiosis caused by other pathogens like MAP may create an ecological niche in the gut where AIEC can thrive.

As the name implies, AIEC adhere to and invade gut epithelial cells. This is where genetic predisposition comes into play - many Crohn's patients have defective intra-cellular immunity. Once an intra-cellular pathogen like MAP takes a strong enough hold in the body, mutations to genes like NOD2 can make naturally clearing the infection impossible. This is where things like Qu Biologic's QBECO, Chamberlin's MAP vaccine, and intra-cellular antibiotics like RedHill's triple therapy come into play.

This response is longer-winded than I intended, so a TL;DR for QBECO would be:

"All we know is that it's an inactivated bacterial vaccine, with site-specific immunomodulatory effects. The inactivated bacteria is enteropathic in nature."
 
One thing I would like to add - I believe that QBECO does not only work in a generalized, systemic immunomodulatory way, but also as a specific AIEC vaccine. As AIEC are one of the most vicious bacteria in Crohn's, reducing their presence in the gut should go a long way towards ameliorating GI symptoms.
 
Started taking my vaccine on friday. At the beginning of this treatment the coli vaccine is dosed much lower than in the Qu trial.
By the way I was not accepted for the trial due to the fact that "the study is nearing its end". I hope the results will be available soon.
There are no side effects so far and there is also no red spot on the injection site. I inject every other day and increase my dosage slowly.
Maybe I should also try the epd therapy.
 
Om3ga1 said:
Wondering when trials will start in the lower 48. Or will that data transfer to an FDA application?
Click to expand...

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.
 
ppk said:
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.
Click to expand...

Good to know. Very interested in this. So long as I don't have to go to B.C.
 
Om3ga1 said:
Good to know. Very interested in this. So long as I don't have to go to B.C.
Click to expand...

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.
 
"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.
 
crohninator said:
"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.
Click to expand...

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.
 
Posting here since the discussion's mostly about E. Coli.

This is an interesting paper on how a perturbation in the gut may lead to a cascade of processes that result in proliferation of E. Coli that overwhelms the gut. And how some current flu remedies, by disrupting some enzymatic processes, can help restore normal balance.
 
Last edited:
crohninator said:
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.
Click to expand...

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.
 
JMC said:
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.
Click to expand...

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.
 
crohninator said:
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.
Click to expand...

Hi Crohninator - how long did you try the MAP therapy out of curiosity and you never saw any improvement at all?
 

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