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#511399 - 06/15/15 01:34 PM Re: Gut bacteria and AS [Re: drizzit]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
thanks for the info. not surprising.....to me at least....bowel issues since i was a kid....joint issues not til 35.....and though i've never been able to explain it, not only sauerkraut for me, but cabbage in general, and beans.....i have to have them in my diet daily or i'm constipated, even with the humira......though the humira helps too....the first few days after i take it, i see a huge difference, then its downhill again, till the next shot....but beans and cabbage will help it along.....

i'd love to at least try fecal transplant....my rheumy and i are both convinced that my spondy all started in my gut...probably since birth.....C section also does not bode well for human health....the birth canal doses us with healthy bacteria...and if we don't enter the world that way, we start off life at a disadvantage.

in lieu of a fecal transplant, I'd be cool with trying a supplement that my intestines might be missing...if i could supplement with food, even better.....maybe the clue is in the cabbage and beans? I used to think it was "fiber" but other even more fibrous foods don't do the same thing.....

its all very interesting.

i just hope that they keep it broad for all "spondy", otherwise, undiff spondy or just spondy makes me fall through the cracks.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#511401 - 06/15/15 01:55 PM Re: Gut bacteria and AS [Re: drizzit]
drizzit Offline
Silver_AS_Kicker

Registered: 02/25/06
Posts: 1483
Loc: Montana
SAA has given permission to share here is the full article


Treasures Come From Unexpected Sources; Lessons For Ankylosing Spondylitis?
By James T. Rosenbaum, M.D.

Summer 2015 Issue of Spondylitis Plus
Dr. Rosenbaum is Chief of the Division of Arthritis & Rheumatic Diseases, and Edward E Rosenbaum Professor of Inflammation Research at Oregon Health & Science University; Richard Chenoweth Chair of Ophthalmology at Legacy Devers Eye Institute in Portland, Oregon; and former Chair & current member of SAA’s Medical and Scientific Advisory Board. You can revisit Dr. Rosenbaum’s article, ”Does the Microbiome Cause Ankylosing Spondylitis,” written for the Winter 2011 issue of Spondylitis Plus, in the Spondylitis Plus archives on our website. (Or by following this link, (http://www.spondylitis.org/members/49.aspx)

Our deepest thanks to Dr. Rosenbaum for this follow-up article on the microbiome.

What is the most disgusting substance you can imagine?

Most of us would say that human feces has to rank right at the top of any list. But life is filled with ironies. Human feces is emerging as a potential treatment for ankylosing spondylitis. Let me explain why.

Ankylosing spondylitis is a disease in which our immune system plays a critical role. Our immune system has many components and many checks and balances. The heart and soul of the immune system is the white blood cell or leukocyte. One type of white cell, the lymphocyte, plays a very prominent role in immune-mediated diseases like ankylosing spondylitis. We know that the immune system is vital in this disease because of studies on pathology in joint tissue, because of studies with laboratory animals, and perhaps most of all, because therapies that are beneficial for ankylosing spondylitis work by affecting some aspect of the immune response.

Our immune system evolved to protect us from the danger that lurks with invading micro-organisms such as bacteria or viruses. The immune system is so vital to life that even plants and bacteria have evolved clever ways to defend themselves with an immune response.

But the immune system must be selective in its approach. If the immune system attacked all bacteria, the body would be destroyed. For example, bacteria live on your skin, in your mouth, and throughout your digestive system. In fact, you have ten bacteria living in your intestines for every mammalian cell in your body. From this perspective, ninety percent of every living being is bacteria! If our immune system deployed its weapons to destroy the bacteria that happily co-exist with us, wide-spread inflammation would result wherever bacteria are present. In fact, this is the currently accepted theory as to what causes Crohn’s disease and ulcerative colitis, the two most common forms of inflammatory bowel disease. Our immune system attacks some of the bacteria in our intestines, resulting in diarrhea and abdominal pain.

Bacteria need to find a public relations firm to represent them. Most of us hear “bacteria” and we think of infections and the harm, even death that can result from many different bacterial infections. But bacteria are also essential for life. For example, much of the vitamin K produced within our body is made directly by bacteria. One of the most essential roles for bacteria is to educate the immune system. Mice can be raised “germ free” so that no bacteria ever live within the gut. In these germ free mice, an effective immune system never develops. While it’s absolutely true that bacteria can do harm, it’s also true that bacteria are essential for life.

So how does this relate to ankylosing spondylitis? Well, first of all, ankylosing spondylitis and inflammatory bowel disease have a lot in common. In ankylosing spondylitis, the majority of sufferers have microscopic amounts of bowel inflammation that can be detected by colonoscopy. And conversely, in inflammatory bowel disease, some patients develop arthritis in the spine and elsewhere as is characteristic of ankylosing spondylitis. Inflammation inside the eye or uveitis also occurs in both inflammatory bowel disease and ankylosing spondylitis.

Last year, my colleagues and I reported on the gut bacteria in rats that have the human HLA B27 gene, the gene that readers of Spondylitis Plus will recognize as the one that most affects the likelihood to develop ankylosing spondylitis. Our observations appeared in the journal, PLoS One. (PLoS stands for the Public Library of Science. The journal is available for free on the internet.) We found that the bacteria in the rat intestine were altered just by being HLA B27 positive. In March, 2015 scientists from Australia and Italy reported in the journal, Arthritis and Rheumatology, that bacteria in the intestine are also altered in patients with ankylosing spondylitis.

Of course, it’s possible that these changes in bacteria have nothing to do with what is causing ankylosing spondylitis. Except that there are models in rats and in mice in which an illness that resembles ankylosing spondylitis can be induced. And in both the rats and the mice, elimination of the bacteria pretty much eliminates the joint and bowel disease. The crudest way to change your gut bacteria would be through a technique now known as FMT, fecal microbiota transplant. While the idea of ingesting someone else’s bowel movement sounds absolutely disgusting, in 2013 a study in the New England Journal of Medicine showed that FMT could be life saving for a bacterial infection known as C diff colitis. One does not actually ingest poop. Instead the bacteria from the bowel movement are isolated and then swallowed as a capsule or passed directly into the stomach through a tube, or given rectally as an enema. This same approach has been used to treat inflammatory bowel disease, and while it is not universally effective, the results are encouraging.

A more elegant and more appealing approach to fecal transplant would be replacing or changing just a single type of bacteria, as is attempted with a probiotic. The complexity of the bacterial ecosystem in the gut with nearly 100 trillion inhabitants makes it difficult to find a single or limited number of culprits that cause ankylosing spondylitis, but this is a possibility. The progress in this area of research is very encouraging.

Gut bacteria are also very much affected by diet since what we ingest provides the substrate for bacteria to live. Diet is as complicated as the bacterial ecosystem in the gut. We are still learning which foods might have an anti-inflammatory effect. Antibiotics also change the gut microbiota, but this effect is temporary because bacteria quickly develop resistance.

Bacteria produce a number of chemical products that affect the health of our intestines. One of these chemicals, for example, is propionic acid. A change in the microbiome would result in changes in the chemical balance within the gut. Possibly this chemical balance could be restored without actually changing the bacteria. One strategy might be to simply drink propionic acid. A number of laboratories have recently reported exciting data in laboratory animals suggesting that propionic acid or other so called short chain fatty acids could be used to improve the health of the bowel. And while we do not know this for sure, I think that it is very likely that a healthier bowel would be an effective treatment for ankylosing spondylitis. The benefit from sulfasalazine for some patients may come from this basis.

The microbiome is a term that is used to describe all the micro-organisms and their products associated with the human body. Intense study of the microbiome has been undertaken for less than a decade. The coming decade should help us discover more specific microbial changes associated with ankylosing spondylitis. We will also gain more knowledge about how diet affects the microbiome and we will develop ways to restore the health of the bowel, sometimes by replacing or eliminating specific bacteria and sometimes by replacing or eliminating the products that bacteria make or induce within the intestine. In the meantime, FMT, the transplantation of bacteria from feces, is being actively studied to treat inflammatory bowel disease. My colleagues and I hope that by 2016, we will be allowed by the FDA and ethics committees to try the same strategy in a limited number of patients with ankylosing spondylitis.

I have been studying ankylosing spondylitis for 37 years. Until recently, no one could have convinced me that feces might just be the key to understanding this disease.
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

Top
#511402 - 06/15/15 03:27 PM Re: Gut bacteria and AS [Re: drizzit]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
Great article. Thanks.

Top
#511494 - 06/25/15 05:27 PM Re: Gut bacteria and AS [Re: drizzit]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
I've gone through 2 FMT treatments and supplemented with 2 FMT capsules. It definitely improved my condition about 50%, but the results aren't lasting and it did not prevent the major flares I get each month with menstruation (but it at least reduced it from 2-3 flares a month to only one).

I've been wondering if the bad bacteria is just extremely tenacious and returns (despite taking an antibiotic before the procedure, I don't know if it completely destroyed the biofilm).

I also wonder if my intestines are damaged and need repair. I have chronic, long-term constipation that began at the age of 30 (I'm now 40). Nothing seems to alleviate this condition, but the gastro doc said that I have a slight twist in my colon and also muscle atrophy in part of the colon (lazy).

I think FMT needs to really concentrate on 3 angles: destroying bad bacteria completely, replenishing the colon with good bacteria and then maintaining a perfect diet to "grow" the new "forest" in the colon, and repairing the colon completely. I want to know the best ways to do these 3 things!

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#511519 - 06/27/15 09:43 AM Re: Gut bacteria and AS [Re: Lindyap]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
Originally Posted By Lindyap
I've gone through 2 FMT treatments and supplemented with 2 FMT capsules. It definitely improved my condition about 50%, but the results aren't lasting and it did not prevent the major flares I get each month with menstruation (but it at least reduced it from 2-3 flares a month to only one).

I've been wondering if the bad bacteria is just extremely tenacious and returns (despite taking an antibiotic before the procedure, I don't know if it completely destroyed the biofilm).

I also wonder if my intestines are damaged and need repair. I have chronic, long-term constipation that began at the age of 30 (I'm now 40). Nothing seems to alleviate this condition, but the gastro doc said that I have a slight twist in my colon and also muscle atrophy in part of the colon (lazy).

I think FMT needs to really concentrate on 3 angles: destroying bad bacteria completely, replenishing the colon with good bacteria and then maintaining a perfect diet to "grow" the new "forest" in the colon, and repairing the colon completely. I want to know the best ways to do these 3 things!


thanks for this update. sorry it didn't work better for you. but you are the first person i've heard get treated for spondy and say it only temporarily worked.

i'm like you, as you know, with the chronic constipation. though for me, it was on and off til 30, then i had the opposite problem for the next few years, and only sort of permanently chronic the last 5-10 years.

i can't remember if you are on a biologic. but for me humira does help keep things moving. and i have to eat beans and cabbage every day, that's what my gut seems to want. and then of course all the things we've both compared with one another.

i was hoping you would have better success. 1. for you. 2. for hopes for the rest of us....ok me. smile

but as you said, maybe there is a way to do this.

one thing i thought of when i heard how well it worked for c diff patients. they started with a healthy gut, got sick so it was easier to return them to health. but we start with an unhealthy gut. is it because the bad bacteria hide in our appendix, waiting to replenish our gut when its wiped out (they now believe that is the role of the appendix); so maybe those bacteria don't get wiped out by antibiotics? or as you said, maybe we need to heal the gut? but then why would it get better and then worse again? still i believe in healing the gut. i just bought glutamine (recommended by the owner of a GNC franchise who seemed knowledgeable and recommended here).

I still hold out hope for FMT. But good to hear the reality as it stands to day from someone with experience. so, thank you.


Edited by Sue22 (06/27/15 09:43 AM)
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#511600 - 07/02/15 05:19 AM Re: Gut bacteria and AS [Re: Sue22]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
When I was reading up about FMT a while ago I read that you need to should heal the gut first and address what might have caused the leaky gut in the first place and then have the FMT. Also people like us need up 10 to 20 consecutive!

Confession blush I did several home FMT using hubby as donor last year the first was a one off just to see what happened whether it was worth forking out for treatment. It helped but as Lindyap said it was temporary. My poop smelled of his for a while and then went back to how it was. We also did about ten consecutive too but again I am back to square one.

So I feel the gut needs healing then repopulating and being very strict with nourishing the new stuff with the right foods afterwards (who knows what that might be). What I do remember is my tongue went pink for the first time I had noticed (usually white ish and I was warm, usually layered up all the time).

I should also add that I didn't make him eat a strict diet beforehand which may be important too though he is a healthy eater I feed him after all but not quite as healthy eating as me as he doesn't have my problems!

I know my gut hasn't healed as I recently had a bout of iritis. So I am now trying a gut healing protocol to see if that works.
_________________________
NSD almost all the way
No dairy hard cheeses occasionally and homemade ghee
Still trying to work out what makes me tick and what makes me drop

'Chew your drinks and drink your foods'
'Let your knife & fork do the work of your teeth and let your teeth do the work of your stomach'
Mahatma Gandhi

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#511602 - 07/02/15 05:24 AM Re: Gut bacteria and AS [Re: drizzit]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
What is your gut healing protocol please?

Top
#511603 - 07/02/15 07:45 AM Re: Gut bacteria and AS [Re: Staffy]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Hi,

I have been reading The Gut Health Protocol (for which there is a facebook group) which talks about a kill phase (four weeks or so) where you take biofilm disruptors to stop any bad stuff from hiding and kill supplements to kill the bad stuff, followed by a healing and maintenance phase.

http://www.theguthealthprotocol.com/wp/

To give you an idea of the long list https://docs.google.com/document/d/14oT_qVwXtABV2V3wsHHBnDAY017_ycdS3RkOQJkwIrg/edit?pli=1

I have also read Terry Wahls book which is very much food based. Both emphasise bone broths, kefir sauerkraut etc as being the most important. Terry Wahls is not so much about healing the gut specifically. John Herrons book is more about SIBO and SIFO and leaky gut caused by it than autoimmune problems as such. I am hoping to combine the two though dietwise I am doing it pretty much already.

I am not a fan of supplements but diet doesn't seem to be enough at the moment I am either eating something that triggers me (non starchy) or I have something else that is stopping me from healing.
I have pared down for the moment what I am taking because of cost and my reluctance which may be a bad thing ie not doing it as full on as I should so its wasted.

Everyone is different and I chose these from the many mentioned in the book. I have just started taking Lactoferrin and NAC as my biofilm disruptors, S Boulardii for possible not tested though candida, it also helps heal the gut and olive leaf extract to target the klebsiella. I am looking to maybe add a couple more 'kill' supplements to rotate that might target the klebsiella. I am avoiding oregano oil for the moment as that kills everything.

So far for when I get to the healing phase I am going to take l'glutamine and colostrum and possibly boron which has good reviews for arthritis type conditions and zinc carnousine though then it gets complicated with needing other things for absorbtion etc.

This is of course in addition to the no starch diet and if I can manage it AIP protocol (no nuts and nightshades etc). Plus coconut oil, EVO and ACV ferments etc. I have just started making raw milk kefir (technically dairy but 48 hour ferment) and I think that is doing me good. I am also trying coconut kefir but my first batch was a bit to sour for me.

I will keep people posted if I find it is helping and I am not just pouring money down the drain.
x
_________________________
NSD almost all the way
No dairy hard cheeses occasionally and homemade ghee
Still trying to work out what makes me tick and what makes me drop

'Chew your drinks and drink your foods'
'Let your knife & fork do the work of your teeth and let your teeth do the work of your stomach'
Mahatma Gandhi

Top
#511605 - 07/02/15 08:41 AM Re: Gut bacteria and AS [Re: Sue22]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
I have just come across this interesting view on why FMT sometimes doesn't work:

http://thepowerofpoop.com/why-fmt-doesnt-always-work/

It even mentions AS!

Also talks about biofilms and not embarking on it without supervision to target the right thing maybe consequences a bit like the overuse of antibiotics frown ho hum still going round in circles impossible to find someone over here recommended that would treat the whole body and not just 'medically' that you could trust as it would cost loads for the tests etc, sigh.

x


Edited by Grumpyally (07/02/15 08:50 AM)
_________________________
NSD almost all the way
No dairy hard cheeses occasionally and homemade ghee
Still trying to work out what makes me tick and what makes me drop

'Chew your drinks and drink your foods'
'Let your knife & fork do the work of your teeth and let your teeth do the work of your stomach'
Mahatma Gandhi

Top
#511608 - 07/02/15 01:59 PM Re: Gut bacteria and AS [Re: Grumpyally]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
Originally Posted By Grumpyally
I have just come across this interesting view on why FMT sometimes doesn't work:

http://thepowerofpoop.com/why-fmt-doesnt-always-work/

It even mentions AS!

Also talks about biofilms and not embarking on it without supervision to target the right thing maybe consequences a bit like the overuse of antibiotics frown ho hum still going round in circles impossible to find someone over here recommended that would treat the whole body and not just 'medically' that you could trust as it would cost loads for the tests etc, sigh.

x


thank you for that; that was really informative smile
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
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