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Looks like sarcoidosis may have a mycobacterial component too. Here's John Aitken's latest blog about what he's seeing down the microscope in arcoidosis samples, followed by a remarkable case study of a patient with cardiac sarcoidosis (which is fatal) who recovered with Dr. Borody's antibiotic regimen.

https://humanpara.org/john-aitken-the-circle-widens/

https://humanpara.org/cardiac-sarcoidosis-patient-healed-by-anti-map-antibiotics/

And did you know that Human Para has an entire section dedicated to sarcoidosis and the associated research!?

https://humanpara.org/sarcoidosis/

As new information about the results of Human Para's inaugural study become available, I will post information here.

Here are two new videos describing preliminary results.

https://humanpara.org/berkeley-conference-preliminary-findings-of-the-map-crohns-disease-testing-study/

https://humanpara.org/berkeley-conference-phase-assay-testing-of-human-pbmcs/

New article discussing how mycobacteria cause skin disease. M. avium is mentioned, and this may be relavant since Crohn's patients sometimes have cutaneous involvement.

https://link.springer.com/article/10.1007/s40475-018-0161-7

haha

If anyone wanted to see RedHill's powerpoint on the Phase 3 trial results for RHB-104 at the UEG week in October, the link is below:
https://ir.redhillbio.com/static-files/9ad86345-7a74-417b-ab8d-8921a9c56a74

Looks like anti-TNFs and AMAT work well together! Also, impressed with the endoscopic healing results on the last slide.

Yes cases like these give us immense hope for the future

This forum replaces our private Facebook group. Some of the boards are public, some are able to be viewed only by members. Be mindful when posting personal health information.

Human Para is committed to providing patients and health care professionals information about the role of atypical mycobacteria and Mycobacterium avium subspecies paratuberculosis (MAP) in immune conditions. Human Para also supports innovative human MAP research studies which could lead to healing. We will never stop seeking a cure for human MAP-driven diseases.

A few necessary ground rules:

1. Before being approved to join, we may send you a quick message to confirm your interest in the group. This is a security measure to stop spammers and to keep our group safe.

2. No links allowed to unrelated spam material. Users who try to introduce themselves and send members to "check out their new site" will be banned permanently, and their IP address registered on our Do Not Allow list. This is strictly enforced to maintain a safe, spam free environment for all members.

3. Please be positive and constructive. Chronic immune disease is bad enough without a group member telling you how wrong you are! Discuss, but don't be mean.

4. Post should be somehow tangentially related to mycobacteria and immune conditions. They should also be evidence based, and may be removed if they cannot be supported by valid, published research. We encourage a wide range discussion, but hope to mostly focus on this niche.

5. No profanity.

6. No bashing doctors or researchers. Sharing your positive/negative experiences with a doctor is acceptable, but personal attacks will not be tolerated.

7. No fundraising or monetary requests of other organizations unless approved by Admin prior to posting.

8. Nothing on this forum is to be construed as giving medical advice. Work with your doctor to determine the best treatment for you.

9. Lastly - have fun and learn! Support each other, problem solve and draw strength knowing there are others like you who enjoy the wide diversity of the members we have.

We welcome you with open arms, and hope you find value in our information and make connections with each other. We are always interested in your comments and suggestions. Together we are stronger!

Hyperbaric oxygen therapy (HBOT) is sometimes used to treat fistulas. Has anyone considered rectal insufflation ozone therapy for anal fistulas, rather than traditional HBOT? This small study concluded this treatment is not promising. However, even with such a low success rate (25%), I wonder if this therapy may be worth a try since it is relatively painless and low risk. I imagine it would be cost prohibitive for most patients since insurance would most likely not cover ozone therapy.
https://link.springer.com/article/10.1007/s12262-016-1475-0

I have always suspected the body's iron withholding process was the cause of my son's anemia, rather than poor absorption or occult bleeding. Regardless of how much iron my son took, his levels never improved. I wondered if iron supplementation might be making his MAP infection worse. I spoke to John Aitken about this several years ago; he thought that supplementation could, indeed, worsen MAP infections.

I took a lot of prednisone for Crohn's from the ages of 18-20, then even more from the age of 24-30. Some days I was taking 60mg, but mostly it was around 30mg a day...every day. Those years are a complete blur in my memory. Eventually, I had to stop taking cortisone as my bones were thinning. Fortunately for me at that time INfliximab/Remicade was approved in Australia and it worked for me, to reduce the inflammation. I ceased taking cortisone in 2008. By 2010 I was feeling fatigued, every day. Some days worse than others, where I would wake up and feel like going back to sleep. Where I would sleep 10 hours a night and often 2-3 hours in the day too. It was debilitating. Eventually, the fatigue got so bad I was seeking answers. Finally, after a LOT of testing, we worked out that my adrenal gland was not making enough cortisol. I was prescribed 8mg of cortisol in the morning and 4mg in the afternoon. This worked, immediately. Instantly I felt better, warmer and more energy and I stopped sleeping in the daytime. After a few months, the fatigue came back. So they upped my dose. I am now on 30mg of cortisol in the morning in a slow release formula and 25MH of DHEA hormone (they work in unison) and apparently, my body should start to level out soon and make enough cortisol itself to compliment what I am taking orally. I still have Infliximab 8 weekly and have done since 2008. I take questran powder twice daily to line the gut to stop the bile stimulating the large bowel, a by-product of 3 surgeries. I also have a B12 injection every 90 days and Blood and urine tests every 90 also to monitor my liver and cortisol levels.

I thought there might be others out there with this problem, that is why I shared it.
Good luck!