MAP at the 2023 UEG

[Veske]

https://humanpara.org/map-at-the-2023-ueg/

 

[Delta_hippo]

Thanks for sharing, very interesting. Hopefully the early (phase 2?) map vaccine results will be out shortly

 

[Waldo]

Thanks for sharing. I have followed the MAP research for many years now. It was a setback that Prof. John Hermon-Taylor died, but great to see that the Human Para Foundation is still active and that Dr. Chamberlain / John Aitken continues to do research. I sent off blood samples to Aitkens lab some years ago, and the test came back positive for MAP. But what to do with that information?

Dr. Chamberlains statement that the key is to boost the immune system, not suppressing it makes alot of sense to me.

When I was treated with immune suppressing biologics (1999-12, 2014-2016, 2018-1020) I never reached a state of histologic remission (complete recovery of the mucosa, with absence of inflammation or structural changes). While my symptoms were suppressed, the underlying cause was still there. I tried to get off the biologics three times (due to kidney disease), symptoms came back.

In 2010 I started to get inflammation with granulomas in my kidneys. They are now both in a poor state, which further weakens my immune system. The Docs tried to switch to different biologics, but all of them led to decrease in kidney function. It is unclear whether it is caused by an allergic reaction to the biologics, because the immune suppression has allowed bacteria to infect my kidneys, or it is unrelated to the biologics and a direct manifestation of Crohns, unrelated to the drugs (doctors consider this last option unlikely). So I will never take biologics again, and I wonder how many Crohns patients who were/are permanently on biologics for many years suffer (or will suffer) from extraintenstinal disease?

Other mycobacterium infections are more likely to cause active diesase in susceptible individuals- with weak immune systems. So the question I ask now is this - how do I boost the immune system as much as possible to help the immune system deal with the infection, rather than suppressing it? It is a tough one, because untreated disease it not good, and the only way I can keep life tolerable is by taking corticosteroids and methotrexate (MTX). And recently starting to deal with trauma related chronic stress, which is also detrimental to a healthy immune system.

I once read an article by Dr. Chamberlain where he proposed that MTX is effective because its mechanism of action is to deprive pathogenic bacteria from getting folate. Because the bacteria need folate to survive and can not produce it themselves, they quickly die when MTX disrupt their folate supply. This mechanism is known in other mycobacterial infections, like TB, and it would explain its effectiveness in Crohns disease caused by a MAP infection.

Drugging the Folate Pathway in Mycobacterium Tuberculosis: The Role of Multi-Targeting Agents - PMC (nih.gov)

 

[Delta_hippo]

Some people try the anti-map antibiotic combination, whether that is suitable for someone with your kidney issue I have no idea. I’m in the UK and discussed this with my gastric consultant who got in touch with a colleague in London where they have been using the anti map protocol. The feedback was that some people respond and some don’t and his view was worth looking at if all the Biologics fail but not before. Anecdotal evidence ranges from miraculous to did nothing to intolerable side effects. Over here Dr Chamberlain is the lead and offers private discussions (as opposed to NHS), I assume there are doctors where you are who might be willing to discuss or consider with you.
Hope the therapy angle is going well for you. Best wishes.

 

[Waldo]

Thanks, I got a similar impression, that the combination of antibiotics helps some patients, while others see no effect. The high doses and long duration of treatment is tough for some, it seems. For me that uncertainty and the side effects makes anti-MAP therapy less attractive to try.

 

[Crohn2357]

Thanks, I got a similar impression, that the combination of antibiotics helps some patients, while others see no effect. The high doses and long duration of treatment is tough for some, it seems. For me that uncertainty and the side effects makes anti-MAP therapy less attractive to try.

Do you have any info about the current state of both the “map vaccine” trial and the antibiotic cocktail research by redhill?

 

[Waldo]

Crohn2357, no, and I have stopped following the research, so I am not the right one to ask maybe others here have been keeping up?

 

[Waldo]

Crohn2357, no, and I have stopped following the research, so I am not the right one to ask maybe others here have been keeping up?

 

[Crohn2357]

Crohn2357, no, and I have stopped following the research, so I am not the right one to ask maybe others here have been keeping up?

I also stopped following the research. This is what I wrote about the vaccine a year ago:

I think the current map vaccine trial with Crohn’s patients will prove the vaccine is ineffective in treating Crohn’s disease. I don’t expect any further trials with the vaccine after that.

Rhb-104 antibiotic cocktail that was supposed to be “anti-map” also resulted in more or less the same.

The map hypothesis will then be mostly or completely given up by most people, rightly so.

The dire need for the development of a better understanding of the disease, better treatments, and a cure, remains.

Before this, I had written about my thoughts on the antibiotic cocktail research about six years ago, in another Crohn’s forum; my nickname there was “xy123”.

https://www.healingwell.com/community/default.aspx?f=38&m=4044862
I just wondered how it all ended up. Maybe someone who knows the recent developments will share the latest knowledge in this thread. Nonetheless, thanks for the reply.

 

[Delta_hippo]

The last thing I’ve seen is that the research paper was submitted at the end of 2023 for peer review and is currently waiting to be published. I’ve only seen the pre-print abstract which if I understand correctly says: they tested it on a small number; appears safe, there was an immune response; the group that got the full dose had some significant clinical response; larger trials are needed.
So not a complete fail but seems we’re still a very long way from a) it definitely works or b) it’s available
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4669153

 

[Crohn2357]

The last thing I’ve seen is that the research paper was submitted at the end of 2023 for peer review and is currently waiting to be published. I’ve only seen the pre-print abstract which if I understand correctly says: they tested it on a small number; appears safe, there was an immune response; the group that got the full dose had some significant clinical response; larger trials are needed.
So not a complete fail but seems we’re still a very long way from a) it definitely works or b) it’s available
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4669153

Thanks, could you share the pubmed version of the paper? I couldn’t open the link.

 

[Crohn2357]

the group that got the full dose had some significant clinical response

Have you seen the full paper? How many patients had the full dose, do you know? I’ll delve into it once I get the PubMed version. I wonder whether they tested for MAP before and after the vaccine, their testing method for map, their way of evaluating, and definition of Crohn’s disease activity (whether they looked solely for “CDAI” or they looked for blood/stool markers, colonoscopy/MRI results etc.), how the patients are right now…

 

[Scipio]

This paper is not in PubMed. The notation in its listing in Research Gate says " Preprints and early-stage research may not have been peer reviewed yet."

 

[Delta_hippo]

Sorry for the slow reply been on Easter holidays. I couldn’t open the full paper either, not sure if because I’m not a researcher (just an interested Crohn’s patient) or because I don’t subscribe to that website. However if you scroll down there was a comment from a dr who had apparently reviewed it and they were critical of a lack of evidence gathering in terms of calprotectin scores (which was depressing to read).

 

[Delta_hippo]

Although it was confusing because he also seemed to criticise lack of map testing but I thought one of the reasons the research has taken so long was because they had to develop a map test.
Will have to see what the paper looks like when published but it seems the outcome is likely to be more, larger trials needed and who knows if they have funding for that.

 

[my little penguin]

https://tgh.amegroups.org/article/view/8107/html

 

[Crohn2357]

Sorry for the slow reply been on Easter holidays. I couldn’t open the full paper either, not sure if because I’m not a researcher (just an interested Crohn’s patient) or because I don’t subscribe to that website. However if you scroll down there was a comment from a dr who had apparently reviewed it and they were critical of a lack of evidence gathering in terms of calprotectin scores (which was depressing to read).

Although it was confusing because he also seemed to criticise lack of map testing but I thought one of the reasons the research has taken so long was because they had to develop a map test.
Will have to see what the paper looks like when published but it seems the outcome is likely to be more, larger trials needed and who knows if they have funding for that.

Some months before I wrote THIS a year ago, I had become extremely suspicious of the motives, and the moral and intellectual integrity of the people who run the whole CMV show.

I don’t think anything remotely useful to Crohn’s patients will come out of the CMV show (except for maybe slight theoretical purposes); although I sincerely wish I will be proven wrong.

We need a cure for this damned disease, ASAP.

Do you ever imagine the day when a cure for Crohn’s is actually found, and how you will react to that news, how happy you would become, how much more free and powerful you will feel in relation to your future…

Of course one shouldn’t be fixated on that idea or hope or have that expectation in an unhealthy way, we all should do whatever it takes to be as healthy as possible with what we have in order to have fulfilling, meaningful lives.

With Crohn’s, the worst thing is not even the suffering; it’s the uncertainty of your condition. Do one mistake, something as simple as eating something wrong, and everything you have built can face a continuous earthquake that you don’t have any idea when it may end. There’s also other issues like how you end up being dependent on others, even if it’s family.

We need a cure; not another useless and terrible biological like vedolizumab or JAK inhibitors that big pharma can further enrich themselves with. The old drugs like thiopurines are still the best drugs for Crohn’s disease, don’t let them fool you. Use a good biological like Humira or stelara, in addition to a good dose of 6MP every day to achieve and maintain remission. Combination therapy is the best and only sensible way for Crohn’s patients, for various reasons; unless there are specific problems that make it impossible for you to be on a combination therapy. Diet and lifestyle are also very important with Crohn’s. Doing an extensive elimination diet and consuming things like homemade gelatinous bone broth are crucial for healing and health.

Take care.