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MAP at the 2023 UEG

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)
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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.
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.