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04-16-2015, 06:40 AM   #391
mrjustaguy
 
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This is EXACTLY what Iīm planing to do.

1) AntiMAP-therapy - antibiotics
2) FMT

Results? Hopefully very good

Why? Because of this:
_____________

Dear Sebastian

XXX remounted the path block which had been displaced in the post to us and it went fine.

We ran the MAP test on the 2 skin biopsies obtained from your left lower leg (DDC1103/13 and DDC2083/13)

and the one from your scalp (522/13) and examined them today.

Result:

In the leg samples MAP infection was widely present in cells of the epidermis with scattered sub-epidermal foci.

The appearances in both biopsies were very similar.

In the scalp sample MAP infection within cells in the epidermis and sub-epidermis was conspicuous and much more prominent

than in the leg. Involvement of hair follicles and what looked like sebaceous glands was also seen.

Conclusion:

Together with my previous report (below) on your gut biopsies, this indicates you had a severe MAP infection of your gut

with systemic dissemination and metastatic skin involvement.
Best of luck to you! Keep us posted, please :-)
04-16-2015, 07:26 AM   #392
mrjustaguy
 
Join Date: Jan 2015
Just one pesky little hole I have to poke in this idea...

I can't find the article ATM, but I remember reading that people without Crohn's also have an abundance of MAP, and in the study the people without Crohn's had significantly more MAP than people with Crohn's, which the study posited was due to existing immunosuppressants possessing anti-MAP qualities.

Perhaps the Faecalibacterium prausnitzii found in healthy poo might cancel out the MAP, but it seems to me a FMT might actually have a chance of reinfecting the recipient.
04-16-2015, 08:01 AM   #393
rollinstone
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This is EXACTLY what Iīm planing to do.

1) AntiMAP-therapy - antibiotics
2) FMT

Results? Hopefully very good

Why? Because of this:
_____________

Dear Sebastian

XXX remounted the path block which had been displaced in the post to us and it went fine.

We ran the MAP test on the 2 skin biopsies obtained from your left lower leg (DDC1103/13 and DDC2083/13)

and the one from your scalp (522/13) and examined them today.

Result:

In the leg samples MAP infection was widely present in cells of the epidermis with scattered sub-epidermal foci.

The appearances in both biopsies were very similar.

In the scalp sample MAP infection within cells in the epidermis and sub-epidermis was conspicuous and much more prominent

than in the leg. Involvement of hair follicles and what looked like sebaceous glands was also seen.

Conclusion:

Together with my previous report (below) on your gut biopsies, this indicates you had a severe MAP infection of your gut

with systemic dissemination and metastatic skin involvement.

Seb, can you please pm me how you got the tests done, it really interested in getting some tests done, Though Borody himself told me I'd have little chance of getting anyone to do tests for me..
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04-16-2015, 11:03 AM   #394
wildbill_52280
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sir clausin,

another additional option is to take autophagy inducers, like resveratrol and lithium. This will killl the intracellular bacteria by activating autophagy. My experiments with these substances led to a momentary increase in symptoms and then slight improvement afterwards, highly suggesting something was killed off. i take about 2.5 mg of lithium once a week and resveratrol everyday. every 2 weeks i increase my dosage of resveratrol to the maximum dose, to again clear bacteria i may have accumulated over that length of time. I also believe higher doses of b12 methylcobalamin have a similar effect, but im not sure if its enhancing autophagy or just killing more bacteria in a different way but the experiance is similar to resveratrol and lithium so perhaps the biological mechanism is the same.
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04-16-2015, 12:31 PM   #395
sir.clausin
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Rollinstone: You canīt, itīs not open to the public yet. It will become available further down the road.

wildbill_52280: Thatīs interesting, I will look into it. Thanks.

mrjustaguy: Nah, donīt think so, since a normal functioning immune system will clear out the MAP, not saying that healthy people have none. Itīs just that itīs the main thing here, massively infection of MAP that canīt be killed of by our faulty immune system since itīs blind to it. Also, find the source please for your claim.
04-16-2015, 02:32 PM   #396
xeridea
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Rollinstone: You canīt, itīs not open to the public yet. It will become available further down the road.
Sir Clausin, with the report mentioning metastic skin involvement, would I be wrong to assume you had visible lesions on your lower leg and scalp that were biopsied? I'm curious whether CD presents with skin lesions so far removed from the GI tract like this. Did they exclude leprosy, also a mycobacterial infection but more typically involves the skin?
04-18-2015, 11:11 AM   #397
wildbill_52280
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video on recent study on loss of bacterial diversity in modern societies.

https://www.youtube.com/watch?v=ocyEdosTcE0
04-20-2015, 07:33 AM   #398
mrjustaguy
 
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Bah! Having trouble finding that article, I'll post it as soon as I do.

I think it was on one of the main advocacy sites for the MAP vaccine, but I can't seem to get it.
04-21-2015, 02:26 PM   #399
sir.clausin
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Sir Clausin, with the report mentioning metastic skin involvement, would I be wrong to assume you had visible lesions on your lower leg and scalp that were biopsied? I'm curious whether CD presents with skin lesions so far removed from the GI tract like this. Did they exclude leprosy, also a mycobacterial infection but more typically involves the skin?

That is correct, I did have a big lesion on my leg (Pyoderma Gangrenosum) and scalp lesions (Scarring folliculitis). These were diagnosed by swedish doctors and they treat me as an EXTREMLY rare case. Most GI-doctors Iīve seen never have CD-patients with skin involvement. Nevertheless itīs not unheard of http://www.ccfa.org/resources/skin-c...ns-of-ibd.html

EDIT: MAP is not found in leprosy, just got it confirmed so the answer is no. I do crohns, not leprosy.

Last edited by sir.clausin; 04-21-2015 at 06:16 PM.
04-22-2015, 03:07 PM   #400
wildbill_52280
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http://fresno.craigslist.org/wan/4990155519.html
04-23-2015, 03:09 AM   #401
Spooky1
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The time will come when we all advertise to repair out health.
04-23-2015, 09:24 AM   #402
xeridea
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This article talks about researchers looking at the role of dysbiosis in inflammation of the gut and how that inflammation cascades into other events including diminished effectiveness or even death of paneth cells, a key defense component in the epitheleal lining of the intestine.

They hope their research can uncover how to make fecal transplants more effective for CD and UC treatment.
04-23-2015, 10:19 AM   #403
wildbill_52280
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This article talks about researchers looking at the role of dysbiosis in inflammation of the gut and how that inflammation cascades into other events including diminished effectiveness or even death of paneth cells, a key defense component in the epitheleal lining of the intestine.

They hope their research can uncover how to make fecal transplants more effective for CD and UC treatment.
great article. And I'm glad you are contributing to this thread.
I read about lysozymea and it's supposed antibacterial properties and how it is supposedly high in egg whites. There was a period of time after I took antibiotics where I had no symptoms of crohn's but 8 months after I developed it and i believe the antibiotic caused my crohn's. I wondered if anything I was consuming during that time possibly had delayed the development of the disease, so far resveratrol supplement I was taking seemed to reduce my symptoms so at least that was correct, but i was also eating lots of eggs for breakfast so now I'm wondering if that was another factor contributing due to lysozyme content and its broad ability to breakdown bacterial cell walls. Perhaps it makes sense that the egg would need to be protected by this outer wall from pathogens, and lysozyme is one major way the egg does this. i'll have to try adding eggs back into my diet and see how it affects my symptoms, maybe it's restoring lysozyme levels or something.

here is a study that found egg yolks to reduce inflammatory response, so the idea that eggs may have been somehow contributing to the supression of my symptoms, may have some merit, looks like it might be the yolks and the whites. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4113762/

another shows eggs reduced CRP but not tnf-a http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265719/

egg white derived lysozyme effect on e coli-
http://pubs.acs.org/doi/abs/10.1021/jf4029199

Last edited by wildbill_52280; 04-23-2015 at 09:59 PM.
04-23-2015, 11:19 AM   #404
wildbill_52280
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A new book that just came out 4/21/15 related to microbiome diversity being related to modern diseases.

http://www.amazon.com/The-Good-Gut-C.../dp/B00OZ0TOV2
04-24-2015, 12:47 PM   #405
wildbill_52280
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This article talks about researchers looking at the role of dysbiosis in inflammation of the gut and how that inflammation cascades into other events including diminished effectiveness or even death of paneth cells, a key defense component in the epitheleal lining of the intestine.

They hope their research can uncover how to make fecal transplants more effective for CD and UC treatment.
here is the full study. http://gut.bmj.com/content/early/201....full.pdf+html

this is a great study, id prefer to address these issues in the fecal transplant thread, but i was waiting for a mouse model of IBD based on changes in the microbiome, and this is kind of a step in that direction. This is the first time I've heard of them transferring "IBD" into another mouse, they have done this with obesity in mice already.

what was really cool is that they could influence where the inflammation occured by giving the mice antibiotics. This supports my previous belief that one of the main differences in uc and crohn's is the type of pathogens that exist. But more importantly, it is strong evidence for the sole cause of IBD to originate from the microbiome and not genetics. This supports the idea of fixing the microbiome issues with a fecal transplant, which could then correct the disease itself.
04-25-2015, 10:23 PM   #406
wildbill_52280
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More Studies planned for Fecal Transplants in Crohn's Disease in the US. I think that's a total of 18 studies either already completed or planned through 2016.

https://clinicaltrials.gov/ct2/show/...ohn%27s&rank=1

https://clinicaltrials.gov/ct2/show/...ohn%27s&rank=9

https://clinicaltrials.gov/ct2/show/...hn%27s&rank=11
04-26-2015, 11:13 AM   #407
Crohn2357
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More Studies planned for Fecal Transplants in Crohn's Disease in the US. I think that's a total of 18 studies either already completed or planned through 2016.
Impressive.
05-02-2015, 02:50 AM   #408
Crohn2357
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Makes me really sad to think about our dysbiosis. Wish we had a way to restore our gut flora. Maybe after complete remission it would restore itself with the help of a good diet ha?
Now I can't even tolerate lactic acid. Gives me migraines every time. This is why I can't even eat any fermented food.

The microbiome-gut-brain axis: from bowel to behavior
https://www.google.com.tr/url?sa=t&r...,d.d2s&cad=rja



Last edited by Crohn2357; 05-02-2015 at 03:35 AM.
05-02-2015, 03:08 AM   #409
boax
 
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Another Crohn's FMT study with only one treatment but quite positive results. Donor similarity seems to be key once again to a successful outcome once again. Still seems like FMT for ibd is more viable as a continuous treatment rather than a cure at this point.

http://journals.lww.com/ibdjournal/F...linical.7.aspx

Last edited by boax; 05-02-2015 at 06:45 AM.
05-02-2015, 05:55 AM   #410
rollinstone
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Another Crohn's FMT study with only one treatment but quite positive results. Do Donor similarity seems to be key once to a successful outcome once again. Still seems like FMT for ibd is more viable as a continuous treatment rather than a cure at this point.

http://journals.lww.com/ibdjournal/F...linical.7.aspx
Jansen and Jansen have pills on the way I'm pretty sure.
05-02-2015, 06:39 PM   #411
wildbill_52280
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Another Crohn's FMT study with only one treatment but quite positive results. Donor similarity seems to be key once again to a successful outcome once again. Still seems like FMT for ibd is more viable as a continuous treatment rather than a cure at this point.

http://journals.lww.com/ibdjournal/F...linical.7.aspx
Thanks but we already posted this awesome study, see post #339 on page 12.
05-03-2015, 01:35 AM   #412
boax
 
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Thanks but we already posted this awesome study, see post #339 on page 12.
Thanks for pointing it out! Was latest news at an ibd news site, I'll check more thoroughly next time.
05-03-2015, 05:29 PM   #413
rollinstone
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Thanks for pointing it out! Was latest news at an ibd news site, I'll check more thoroughly next time.
Reposts of news are always good incase people have missed older posts so don't worry too much if something's already been posted, if it raises more awareness it's a win.
05-03-2015, 08:26 PM   #414
xeridea
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That separate studies draw different conclusions points to the nascent nature of FMT and suggests that so much more research is needed in this area. Or maybe that's just the nature of Crohn's.

The above Suskind study concludes that the greater the difference in bacterial makeup of host and donor, the better the results. Conversely, I've seen other studies say the more similar the bacterial makeup the better the results. I don't have a reference to the similar makeup study to link to but will do so when I run across it again.
05-04-2015, 09:52 AM   #415
wildbill_52280
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This is a google ad I saw today for a rebiotix fecal transplant pill study for c. difficile-

http://rebiotix.com/punchcd2/ClinicP...w#.VUeHd9JViko
05-04-2015, 10:04 AM   #416
wildbill_52280
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Here is an article about microbiome diversity May 3rd 2015 BBC.
http://www.bbc.com/news/health-32543176
05-05-2015, 10:22 AM   #417
Spooky1
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Shame I live in Bude, UK, and not Chicago.
05-05-2015, 02:20 PM   #418
xeridea
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This is a cool study for folks who go the FMT route for C. Diff. Researches in a controlled randomized study show significant reduction of recurrent C. Diff when they orally administer harmless/non-toxigenic C. Diff spores during treatment.

http://jama.jamanetwork.com/article....icleid=2281703
05-06-2015, 01:53 PM   #419
wildbill_52280
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Replenishing our defensive microbes
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102301/


The modern infatuation with cleanliness stems in part from the misguided midcentury thinking that most microbes cause disease, and that the absence of microbes is therefore a key component of health. Over the last twenty years, the use of culture-independent methods that allow us to identify the members of human-associated microbial communities that are difficult to grow in the laboratory, together with epidemiological studies and studies of germ-free mice, has started to change this thinking. There is now compelling evidence that the opposite is true: rather than reducing microbial exposure, we should balance our symbiotic microbial communities to protect us from pathogens and disease states.

Last edited by wildbill_52280; 05-06-2015 at 11:10 PM.
05-06-2015, 10:23 PM   #420
Lady Organic
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I wish I could get a transplant from those Malawi and Venezualian rural people they are talking about
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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