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#490848 - 06/25/13 03:04 PM Fecal transplant & Helminthic therapy
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Hey,

I think there has been some discussions about Fecal transplant and Helminthic therapy but I would like to bring the topic back to life. I know they are both relativity new therapy s but from what I've read the results have been promising. Does anybody know more about these new therapys or have tried them? there is limited info on the net.

Cheers,
Ev

Helmithic therapy(hookworm&whipworm) - autoimmunetherapies.com
_________________________
Evan

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#490966 - 06/28/13 10:12 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
jroc Offline
Decorated_AS_Kicker

Registered: 10/30/08
Posts: 744
Loc: New Zealand
Hi

Great question! These are two very interesting and promising lines of research in both IBD and SpA. I have a quite a few papers on both of these topics. If you PM me your email address I would be happy to send you some.

Cheers

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#490991 - 06/30/13 09:30 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
the first time I had heard of fecal transplants, i thought it was a joke, but then upon reading, realized 1) it was for real and 2) it actually made a lot of sense.

seeing more on the gut microbiome than on fecal transplants per se, but if what they are saying about the difference of the microbial makeup of people with various illnesses is true (it is), then the next step would be to "fix" that.

What better way to fix it than by fecal transplant.
_________________________


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
#491023 - 06/30/13 09:06 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 517
Loc: phoenix
fecal transplant at my hospital has only been used for C-diff toxins which make people really sick. the cure rate is very high AFTER you fight the insurance company to have it done. It's still considered experimental.
drug companies hate curative therapies like this.

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#491083 - 07/01/13 08:39 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Ari,

Do you know if they have to find their own donors or does the hospital hook you up with the proper donor?

Sue,

very true i'm hearing more and more about these treatments too. what i read the benefits from a fecal trans are almost instant..helmiths can take 6-12 months before you see results
_________________________
Evan

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#491152 - 07/02/13 11:47 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
bettyrawker Offline
Magical_AS_Kicker

Registered: 03/12/12
Posts: 751
Loc: Oregon
I think they totally make sense!

I also know someone with AS and Colitis who did one with great success.


_________________________
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/

Top
#491155 - 07/03/13 12:19 AM Re: Fecal transplant & Helminthic therapy [Re: bettyrawker]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
the idea of DIY just sounds risky to me, but then I found this:

http://blogs.plos.org/publichealth/2013/...-of-the-reason/

I don't know, maybe I just have to get used to the idea, but it just seems like it would be safer in a doctors office?

Though that's just my opinion, an uninformed opinion at that.
_________________________


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
#491161 - 07/03/13 05:02 AM Re: Fecal transplant & Helminthic therapy [Re: bettyrawker]
The_Inflammator Offline
Journeyman_AS_Kicker

Registered: 06/27/11
Posts: 141
Loc: Northern Virginia
I think they totally make sense!

I also know someone with AS and Colitis who did one with great success.


Short or long-term success?

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#491169 - 07/03/13 10:54 AM Re: Fecal transplant & Helminthic therapy [Re: The_Inflammator]
bettyrawker Offline
Magical_AS_Kicker

Registered: 03/12/12
Posts: 751
Loc: Oregon
It's been about 2 months, overall lots of improvements. Increased energy, less sensitivity to a variety of foods (huge improvement here!!), face is more full of life & color, no dark circles under eyes, less overall GI inflammation and significantly reduced bloating and burping. AS pains were already pretty manageable with low starch and raw foods diet, but GI was still under some distress before the transplant. She did it DIY with a donor from her husband. She would do it again in a heartbeat. She wishes she had just been brave enough to do it 3 years ago, when her AS & GI pains were extreme, maybe she would have help to prevent a portion of the "bamboo spine" that was noted on her recent x-rays. It is too bad there is such a stigma associated with getting treated with a full dose of a well balanced and healthy ecosystem from someone else, as hers was destroyed by overzealous doctors and a year of antibiotics as a small child.
_________________________
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/

Top
#491206 - 07/04/13 08:51 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

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

I think it sounds very interesting I have heard about this but have no experience. They are finding more and more about the link between bowel/gut and health problems every day. It is the only part of the body that exists on its own not needing the brain? to function (I think I've got that right) and is sometimes referred to as the second brain. I have also read that it is very difficult to know just what bacteria is in the gut/colon etc as testing is difficult.

It is very tempting to try but a bit of a hurdle to get over for DIY! Do you choose someone who is very healthy (or are they a ticking timebomb) I read the comment about someone using a babies/young childs but wouldn't they have less bacteria as they are newly exposed to the world?

@Andrea was your friends a DIY or done by a practitioner/
I am seeing my GP tomorrow to request an MOT as I don't think I am absorbing vitamins etc from my food at the moment I might ask her what she knows about it if only to see her facial reaction laugh.
_________________________
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
#491207 - 07/04/13 09:05 AM Re: Fecal transplant & Helminthic therapy [Re: bettyrawker]
Grumpyally Offline
Black_Belt_AS_Kicker

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

I have just reread your post and realise that it was DIY. The first donor that sprang to mind for me was my husband if I were to do it. Did she just go for it or have 'it' tested first for parasites etc and did she just do it once or several times.
I would love to get rid of the dark circles under my eyes and get my energy back I've no AS pains at the moment but definitely feel my gut isn't working as it should.

xx
_________________________
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
#491216 - 07/04/13 11:14 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
I found this posted by somebody from this website/forum http://www.healingwell.com/community/default.aspx?f=38&m=1662417&p=3 who spoke to the person in Australia using this process

Yesterday morning I spoke with Prof T Borody who is the Director of the Centre for Digestive Diseases in Australia where they not only treat patients they also carry out a lot of research. This doctor is highly qualified and highly experienced and for those of you who don't know, had a lot to do with the Nobel Prize won by Barry Marshall for discovering that Helicobacer Pylori causes ulcers. Barry Marhsall spent many years in trying to get the medical community to take his ideas seriously as is often the case in the sciences.



Prof Borody told me that they have carried out Fecal Transplant (FT) treatments on over 1300 patients and that their success rate is exceptional to around 90% and they have been doing it for many years. I do not believe for one second that this Professor of Gastrenterology would make such claims if they were not true.



He explained that medical science had not even scratched the surface in identifying all the different strains of flora that live in the intestinal tract. He also explained that it was highly probable that not all pathogenic bacteria have yet been identified. And he went on to say that human feces is alive with billions of probiotic flora. He believes that digestive diseases are caused by infection and a subsequent upset of the flora of the gut. He said that swallowing probiotics are mostly ineffective because they are so unlikely to be the right strains and also unlikely to reach the colon in sufficient numbers to make a difference. He said that the most pure and highly abundant form of good probiotic bacteria comes from feces from a healthy human donor.



The fact that FT has worked for some people on this board on a DIY basis surely proves the efficacy of this treatment because none of the people here were able to follow the protocol that Borody and his team have formulated over many years and yet they still got good results. Yes, there are some here didn't have success but then that is arguably because they were not able to follow Borody's protocol.



Borody puts people on a strict low fibre diet for 2 weeks prior to treatment. He also treats them with antibiotics as he wants to reduce pathogenic numbers as much as possible to help the good bacteria take a foothold. He also ensures that the donors are tested to be healthy and that their stools are also tested (many asymptomatic people carry C. Difficile). He then does FT a number of times over a number of days. And when he does the FT he uses a colonoscope so that the whole colon can be implanted or he places the implant via a nasal gastric tube into the duodenum (I believe) so that the small intestine can also benefit as some people have Small Intestinal Bacterial Overgrowth. After the FT the patient then embarks on a high fibre diet.



So if we consider the above protocol it is not surprising that some people here have not been too successful but it is equally amazing that some people here have been successful and I propose that this just adds weight to the potential success of this treatment.



In addition some people here used babies poo which I understand because it is readily available if you have a baby but again this is not ideal as a baby's poo has not yet evolved completely and will not have all the desired healthy bacteria (when a baby is born it has no bacteria at all in its gut).



The thought of using someone else's feces is a bit stomach churning but most people would be quite happy to have a blood transfusion or a liver transplant wouldn't they.



I have to say that if anyone here is consdering trying FT but are unable to go to Australia to have it done then they should follow Borody's protocol as much as possible as surely it stands to reason that he knows a darn site more about it than anyone here (no disrespect meant).
_________________________
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
#491295 - 07/05/13 08:55 AM Re: Fecal transplant & Helminthic therapy [Re: Grumpyally]
The_Inflammator Offline
Journeyman_AS_Kicker

Registered: 06/27/11
Posts: 141
Loc: Northern Virginia
Can't believe I haven't heard of these treatments before. I know the focus is on IBD but my gut issues/IBD are very in sync with my AS symptoms. My AS symptoms are always reduced on the rare occasion I have a more solid BMs. I've had IBD almost my entire life, can't remember the last time my stools were solid. My test with NSDiet resolved both issues at the same time.

Lately my AS has gotten worse and my stools are liquid and often bloody. I can't really afford not to try something just because it makes me queezy.

It is a crazy treatment option but what would we have to lose? Anyone else willing to give these options a try? I know some of you are pretty crazy enough to give it a go. They just seem like alternative ways of altering gut flora to me, though approaching it from the opposite end. sick

Top
#491306 - 07/05/13 12:52 PM Re: Fecal transplant & Helminthic therapy [Re: Grumpyally]
bettyrawker Offline
Magical_AS_Kicker

Registered: 03/12/12
Posts: 751
Loc: Oregon
Hey Ally,

She just did it DIY, no doctors testing or anything. She had complete faith in her hubby's poo to do the trick. He is a super healthy guy, and if for some reason she was to contract some unknown for him, she figured (a) how much worse could her IBD get (b) she would the just try another person's poo to correct it.

She realized, once you get over the ick factor, it's quite a beautiful and simple idea. And beautiful and simple ideas and foods seem to be the best cures!

I can send you a PM with more details!
_________________________
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/

Top
#491310 - 07/05/13 01:59 PM Re: Fecal transplant & Helminthic therapy [Re: The_Inflammator]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Hi,
I have just started reading into this and one of the things I came across was that animals when sick will eat another's pooh to get better, so it occurs in nature.
Yes it is very much a case of what have we got to loose if you can get over the gross factor (well its more the smell than anything).
_________________________
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
#491525 - 07/10/13 11:57 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Hey,

Great Info on FMT!
Andrea, did your friend only do it once? i've read some times it takes up to 5 times in a couple weeks.

I am still trying to find more info on Helminthic therapy and AS but have only found results with colitis and IBS. I have been in touch with some patients that are 2 months in with the treatment but that is still to early to tell if it is working or not.
_________________________
Evan

Top
#491588 - 07/11/13 09:07 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
bettyrawker Offline
Magical_AS_Kicker

Registered: 03/12/12
Posts: 751
Loc: Oregon
So far she has only done one FT. She hasn't had any bad GI issues since, so it hasn't seemed necessary to do anymore.

Pretty sure she figures she will likely do a few more in the future, but for now, she doesn't want to mess with a good thing. Ya know, sorta like, if it ain't broke, don't fix it.

As for her any improvement in her AS symptoms, she only has very minimal AS pains from time to time, but she is still on an overall very, very low starch diet. She attributes the reduction of AS pains and inflammation over the years to her diet.

She attributes a happier gut & overall increase in energy to her diet too, but also can see overall GI improvement since doing the FT.
_________________________
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/

Top
#491664 - 07/13/13 03:14 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 517
Loc: phoenix
IT makes a lot of sense and considering my AS blew up for the first time when I got sick in Thailand from a stomach dysentry it makes total sense.

I would consider doing it but would prefer a clinic to do it for me.

Top
#491804 - 07/17/13 07:45 AM Re: Fecal transplant & Helminthic therapy [Re: finnari]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
Hi, all! I have just done 5 days of FMT in Tampa with Dr. Shepard. I don't have c.dificile, but they were able to assist to test this as a potential treatment for Spondylitis.

The following week I had one flare, but this may have been due to a shrimp allergy.

Dr. Shepard was just mentioned in a New York Times article:http://opinionator.blogs.nytimes.com/2013/07/06/why-i-donated-my-stool/

I used their in-house donor (glad I didn't know who it was). Completely easy and painless.

The doctor said to give this 4-9 weeks to establish (like regrowing a forest in intestines). I'll keep everyone posted.

I have been eating some starch (sweet potatoes and some rice). My worry was I need to feed the good bacteria now. No gluten at all, and no sugar.

I'm hoping this brings some answers to us soon!


Edited by Lindyap (07/17/13 07:47 AM)

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#491819 - 07/17/13 03:24 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Possi Offline
Addicted_to_AS_Kickin

Registered: 11/13/02
Posts: 6912
Loc: Oklahoma where the wind comes...
How interesting. I will be anxious to hear what it does for the Sponylitis. I have a daughter in Tampa who does have c.diff. I will have to mention his name to her.

Thanks for sharing.
_________________________


Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."


Top
#491821 - 07/17/13 03:49 PM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
That's great, please keep us posted to how you are doing smile
When you say you need to eat some starch is that to keep the variety of good bacteria there because if you don't eat starch you will loose some of it?
I am considering looking into this further as an option but would be very nervous of eating starch again.
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
#492917 - 08/07/13 08:15 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
Just an update on the Fecal Transplant (FMT). I went to Dr. Shepard in Tampa the 2nd week of July, and after one month, I'm seeing improvement. It isn't 100%, but I've had no flares for 3 weeks, and I'm *completely* off prednisone for the first time since nearly February (haven't had any since I started the treatment in July).

I don't know if it's solely the FMT. I still have gastro issues with a twisted colon and hiatal hernia. Still, I'm now able to eat more starchy things including gluten free pizza (rice/tapioca flour...no bean flour!) and sweet potatoes and winter squash. Happily, I've finally gained some weight (I was down to 108 at 6 feet tall...now up to 120).

I did make a couple changes to medications. I'm only on LDN and a IBS medication called Linzess (to keep colon moving). I did make a change in the place that compounds my LDN. I changed to Scrips pharmacy in Florida which does mail order. Apparently, some places compound LDN incorrectly and it is totally ineffective. I do think it's making a difference since I can feel very swollen at night but wake up in the morning feeling completely better. These are the only two medications I'm taking besides a few supplements (fish oil - sardine/anchovy, turmeric, and plant sterols). I'm also finally able to take probiotics for the first time in years. When I took probiotics before, they would trigger a flare/reaction. This seems like a significant change as well.

I'm still waiting for a few months to see if the improvement continues before I get excited and try spreading the word more widely.

If you have severe colon/gut issues, I do recommend Dr. Shepard. He's incredibly knowledgeable and willing to listen and try new things. I'm thankful for innovative doctors like him! Please let me know if you have any questions about the process...totally painless and simple. I even can suggest a wonderful AirBNB to stay at that is 5 minutes from his office! smile

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#492918 - 08/07/13 08:18 PM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
I forgot to add - I have pretty severe spondylitis. I've been on Humira, methotrexate, sulfa drugs, NSAIDs, but I'm feeling far better now than I did when I was on all the drugs. I did not have a mild case, so this progress IS remarkable. I've also shown spinal damage on x-rays, so my diagnosis was definite.

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#492962 - 08/08/13 02:47 PM Re: Fecal transplant & Helminthic therapy [Re: The_Inflammator]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Originally Posted By: The_Inflammator


It is a crazy treatment option but what would we have to lose? Anyone else willing to give these options a try? I know some of you are pretty crazy enough to give it a go. They just seem like alternative ways of altering gut flora to me, though approaching it from the opposite end. sick


Just this morning I was telling my husband that I'd do it, but I'm pretty sure only through a reputable medical facility. Or maybe wait til they have it down "synthetically" (just the microbes, minus the waste).

My husband said, isn't that basically probiotics? So we talked about the major differences.


Lindyap, thanks for the update. Hearing testimonials is an important way to weigh the evidence, for me.
_________________________


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
#492963 - 08/08/13 03:11 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Thanks for the update Lindyap.

Have any of your guys heard about I think it is called the SmartPill? I don't know to much about it but it is a electronic pill that will take readings through out the digestive system and transmit it to a recorder. it's a pretty new technology I think. Im pretty sure it gives more info than what a stool sample would give.

Ev
_________________________
Evan

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#492966 - 08/08/13 04:05 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
I was supposed to have a camera pill when the colonoscopy showed inflammation and small crohns like ulcers in the ileum. Its really the only way to see the small intestine in any detail and my GI doc and I wanted to see what the rest of my small intestine looked like. But insurance turned me down, said it was only allowed for mysterious internal bleeding issues. So I had to have a CT enterography which only would show crude gross issues with crohns of which I had none.

The cameral pill would have been cool, might have shown more pervasive inflammation and ulceration in the small intestine.
_________________________


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
#492986 - 08/09/13 10:14 AM Re: Fecal transplant & Helminthic therapy [Re: Sue22]
The_Inflammator Offline
Journeyman_AS_Kicker

Registered: 06/27/11
Posts: 141
Loc: Northern Virginia
Just this morning I was telling my husband that I'd do it, but I'm pretty sure only through a reputable medical facility. Or maybe wait til they have it down "synthetically" (just the microbes, minus the waste).

My husband said, isn't that basically probiotics? So we talked about the major differences.


Lindyap, thanks for the update. Hearing testimonials is an important way to weigh the evidence, for me.


Certainly the preferred way of doing it. Though not everyone would have the means to easily get to such a facility, or find people knowledgeable enough to help them. Seems like a few cases of success were posted by some "do-it-yourself"ers in the thread linked to above, even if it was for IBD not AS. On the whole though, you are correct. I plan to explore that option first should I ever decide to do it. Long distance running seems to be helping me a good bit at the moment though.


Edited by The_Inflammator (08/09/13 10:14 AM)

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#492991 - 08/09/13 01:16 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
L33 Offline
Apprentice_AS_Kicker

Registered: 07/17/13
Posts: 77
Loc: South Africa
Thanks All for sharing. Another Awesome post....here.

I would like to say that Fecal transplant looks very promising.

From my experience with trying antibiotics to kill Klebsiella, The importance of gut bacteria became very obvious to me since I had diarrhoea soon after taking antibiotics. ( I took a pro biotic yoghurt to reboot my system i.e fix the diarrhoea problem)

The point is that if gut bacteria is so important for normal health and may be our existence? The possibilities of treating diseases as As, IBD etc with fecal transplant seem very realistic considering the links Klebsiella etc.

The thing is I am not expecting to hear about this sort of treatment from my local doctors any time soon.

I also know that treatments which are of low monetary benefit to the "powers that be" are almost always shunted, alienated.

It's all about the Benjamins!



Edited by L33 (08/09/13 01:16 PM)
_________________________
HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22
ACV treatment see here https://www.youtube.com/watch?v=iputWQ1JHT8
https://www.youtube.com/watch?v=KQghiDNGp3s
https://www.youtube.com/watch?v=FVDbTmFOsxg

Phase 1 ACV
Phase 2 ACV + No Gluten/wheat products(Tested positive Allergies)
Phase 3 ACV + NSD + High fat (Energy)

"See you in the Sun" "Impossible is nothing"

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#493498 - 08/21/13 12:05 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
drizzit Offline
Silver_AS_Kicker

Registered: 02/25/06
Posts: 1483
Loc: Montana
Here is a DIY protocol from a doctor in Canada who developed it and has used it in his practice. It is a PDF


http://crohnsend.com/documents/dr_silverman_home_transplants.pdf

Since the no starch diet has not completely worked for me I am actually considering this




Edited by drizzit (08/21/13 12:11 AM)
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

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#493532 - 08/21/13 03:38 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 517
Loc: phoenix
Thanks for that drizzit.

I developed my AS after a very bad stomach dystentry in Thailand. My gut has always been "bad".
I too cannot probiotics they really flare me up bad, have tried many different types and will never try again. It's almost immediate that I start to feel really tired and flare.

My son is 9 and has solid health. Somehow I need to steal his poop and put it into my 500 dollar blender. LOL. Not sure my wife would understand this latest medical adventure. How the hell do you explain this one?

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#493560 - 08/21/13 09:20 PM Re: Fecal transplant & Helminthic therapy [Re: finnari]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
They showed a segment on "The Doctors" of a young boy with C diff who's mother lent her "fecal material" to her young son....worked like a charm! The little boy is now healthy!

Not the same "The Doctors" segment, but thought others might find this useful:

http://www.thedoctorstv.com/videolib/init/5761


Edited by Sue22 (08/21/13 09:27 PM)
_________________________


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
#494336 - 09/05/13 12:10 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Check this out... http://thepowerofpoop.com/

E
_________________________
Evan

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#494349 - 09/05/13 04:35 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Thank you SO MUCH for that link!

Definitely something to consider.....the more I read up on it, the more I think its for me.

While the Humira and prednisone help with the chronic constipation, its always a battle between my body and my meds....
_________________________


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
#494350 - 09/05/13 04:46 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Well, looks like in the U.S., the FDA has only approved this (in a clinic) for C diff.

Not prepared to go the DIY just yet, though there is a doctor in my town who screens and consults, maybe I'll go have a chat with him.

Think I will start with a conversation with my GI doc first, see if he wishes he could do it or if he thinks I'm crazy, go from there.

And then too I'll see what my rheumy thinks about it. He was the one who told me, "I think all spondyloarthropathies start in the gut." Mine certainly did.

As for doing it, maybe the doctor will encourage me to give DIY a shot....maybe I'll wait til the FDA realizes this is a better option then being on strong meds ones whole life?

Interesting none the less.
_________________________


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
#495184 - 09/21/13 11:39 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
Hello, I'm new here. Do you have some news from Lindyap? And does somebody tested those new probiotics they are trying to make (like "repoopulate")?
greats from France

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#495839 - 10/07/13 07:35 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
sBrian Offline
Second_Degree_AS_Kicker

Registered: 12/05/05
Posts: 205
http://www.mdbuyline.com/repoopulate-how...h.Snokkwf0.dpbs

I was browsing the web reading about this subject and came across this Canadian research team that has isolated a group of 33 bacteria that are susceptable to antibiotics and therefore may be missing in our guts to our detriment possibly. They found this mixture cure C. Difficie just like using feces. They call it "rePOOPulate". So its really nothing more than a very comprehensive probiotic.

Anyone heard of this, and is there a way to get it?

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#495879 - 10/08/13 04:22 PM Re: Fecal transplant & Helminthic therapy [Re: sBrian]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
I think of it as "probiotics on steroids" 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
#495897 - 10/09/13 06:06 AM Re: Fecal transplant & Helminthic therapy [Re: sBrian]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
It seems they wait for an authorisation before to put it on the market in Canada. Also they are still working on something more complexe with more than 30 types of bactrias ( 3 in actual probiotics, about 1000 in the microbiome).


Then you should read it :
http://www.newyorker.com/reporting/2012/10/22/121022fa_fact_specter

http://blogs.law.harvard.edu/billofhealth/2012/10/25/the-uncertain-future-of-probiotics/

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#495898 - 10/09/13 06:20 AM Re: Fecal transplant & Helminthic therapy [Re: sBrian]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
And I also found this (page 39 of the pdf):

https://custom.cvent.com/BB1C1C9B50404AD...20ab270c1c0.pdf

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#495916 - 10/09/13 12:20 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
sBrian Offline
Second_Degree_AS_Kicker

Registered: 12/05/05
Posts: 205
Wow you have found some good information...How on earth did you find page 39 in that long paper?

That article in the new yorker is an eye opener...asthma, childhood obesity.

Thanks for your help.

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#495927 - 10/09/13 04:48 PM Re: Fecal transplant & Helminthic therapy [Re: sBrian]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
ah ah On google: "hlab27+microbiome" then on the pdf, edit, search for "hlab27"... page 39
wink

If somebody speaks french he should watch this documentary about microbiome even if some moments are very trash:
https://www.youtube.com/watch?v=7FEkZpSmMI0

Moreover science seems to improove with probiotics for Crohn witch is, in the other hand, very likely to be linked to SA (like psoriasis). Am I wrong?

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#496005 - 10/11/13 12:51 PM Re: Fecal transplant & Helminthic therapy [Re: lool]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 517
Loc: phoenix
I was all set to do it the last two day. Had a colonic to really empty myself out and gathered all the materials. But my 9 year old son chickened out and was too embarassed to poop in the container I had set out. It's something I dont want to force him to do so if he doesnt I'm going to have to recruit someone else. Not going to use my wife. I do not want to see her poop. grin

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#496009 - 10/11/13 01:12 PM Re: Fecal transplant & Helminthic therapy [Re: finnari]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
You really shouldn't do that by yourself.

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#496148 - 10/14/13 07:39 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
What are the risks of doing at home FMT?..From the research i've done the risks are pretty low if the donor is a child or spouse.
_________________________
Evan

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#496195 - 10/16/13 06:36 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
I'm not a doctor but I guess there are some biologic risks (they probably check a possible infection for exemple) and some psychologic risks for the kid. Moreover this method is quite new so there is no long view on it, even if i think it's saffer than anti tnf (but once again I'm not a doctor).
I found an other interresting article about immunity and microbiome :
http://www.musculoskeletalnetwork.com/rheumatic-diseases/content/article/1145622/2133513

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#496271 - 10/17/13 08:13 AM Re: Fecal transplant & Helminthic therapy [Re: lool]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Originally Posted By: lool
I'm not a doctor but I guess there are some biologic risks (they probably check a possible infection for exemple) and some psychologic risks for the kid. Moreover this method is quite new so there is no long view on it, even if i think it's saffer than anti tnf (but once again I'm not a doctor).
I found an other interresting article about immunity and microbiome :
http://www.musculoskeletalnetwork.com/rheumatic-diseases/content/article/1145622/2133513


Thanks for that.
_________________________


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
#496306 - 10/18/13 01:15 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Hi,
This might help all of us considering this as an option I get emails from the GAPS forum and this topic has come up somebody posted this. I can't get on to look for some reason even though I have requested my ID etc :{

"There is a fairly new Yahoo Group called BTVC-SCD-Plus that has tons of posts regarding FMT. Not to encourage anybody from posting about it here, but people there have been discussing it for months and you may find all the information you looking for already posted."

xx
_________________________
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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#496854 - 10/31/13 12:43 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104

Bacteria in the gut may hold key to many diseases (CBS):

http://www.cbsnews.com/8301-204_162-57608072/

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#497089 - 11/04/13 12:12 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
http://link.springer.com/article/10.1007%2Fs11926-012-0314-y

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#497100 - 11/04/13 05:35 PM Re: Fecal transplant & Helminthic therapy [Re: lool]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Thanks for that.
_________________________


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
#497115 - 11/05/13 03:09 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Violeta Offline
Fourth_Degree_AS_Kicker

Registered: 04/24/12
Posts: 345
Loc: Pennsylvania

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#497121 - 11/05/13 07:08 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
hey Violeta i watched the video...I can't really alter my opinion on a five min video of of someone saying they don't agree with FMT. She does push Probiotics ..isn't FMT a probiotic? I am not familiar with Donna Pessin. Have you tried her program? I read er story and it is touching. at the same time she seems to sell sell sell. she goes on to say,

"I learned how to heal my bowel and how to safely but aggressively eliminate the enormous storage of acids/toxins in my body. This accomplished a healing of my body that all of the other programswhich only treat the symptoms of an acidic/ toxic bodynever would or could accomplish."

Im curious what her approach is. I know water only fasting is proven to achieve this in a generally short period of time, it's just a question on how to keep those results .
_________________________
Evan

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#497132 - 11/06/13 08:51 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Violeta Offline
Fourth_Degree_AS_Kicker

Registered: 04/24/12
Posts: 345
Loc: Pennsylvania
Originally Posted By: evand1991
hey Violeta i watched the video...I can't really alter my opinion on a five min video of of someone saying they don't agree with FMT. She does push Probiotics ..isn't FMT a probiotic? I am not familiar with Donna Pessin. Have you tried her program? I read er story and it is touching. at the same time she seems to sell sell sell. she goes on to say,

"I learned how to heal my bowel and how to safely but aggressively eliminate the enormous storage of acids/toxins in my body. This accomplished a healing of my body that all of the other programswhich only treat the symptoms of an acidic/ toxic bodynever would or could accomplish."

Im curious what her approach is. I know water only fasting is proven to achieve this in a generally short period of time, it's just a question on how to keep those results .


Yes, she does push probiotics. She's not saying that the health of the bowel isn't important. In fact, her whole approach is to heal the bowel. As you said with the results of water fasting being hard to hold on to, can you imagine the difficulty of holding onto the results of a fecal transplant?

She's saying that if your bowel is sick, you have to most likely clean up other stuff in your body. Also, if your bowel is sick, it contains a lot of toxic stuff. Imagine planting a garden. You put a plant on top of hard, dead soil. Will it take? Probably not. There's a lot of stuff built up in there that needs to come out. Not only in your colon, but in your small intestines, too. Then you start to let the toxins come out of your glands and organs. How can you have a healthy bowel if your stomach, liver, and pancreas aren't working right? It's impossible. Even water fasting can't break up the stuff in your liver, small intestines, and colon. I learned a lot from gardening. Put the fertilizer on top of some hard soil and walk away. Some will seep down, some will get washed away. Try making a compost pile.
I don't buy her stuff, I just learn from her. I don't do everything she recommends; I do look, listen, and learn, though.

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#497164 - 11/07/13 11:09 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
Come on, it takes more than a paperboard to look serious. Many studies shown that actual probiotics are not efficient on AS. But it could change very soon.

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#497312 - 11/12/13 04:53 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104

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#497930 - 12/01/13 07:43 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
I post it here because fatigue is a real part of AS :


http://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA

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#498711 - 12/28/13 03:10 AM Re: Fecal transplant & Helminthic therapy [Re: lool]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool
New_Member

Registered: 09/21/13
Posts: 14
I'm not a doctor but I guess there are some biologic risks (they probably check a possible infection for exemple) and some psychologic risks for the kid. Moreover this method is quite new so there is no long view on it, even if i think it's saffer than anti tnf (but once again I'm not a doctor).
I found an other interresting article about immunity and microbiome :
http://www.musculoskeletalnetwork.com/rheumatic-diseases/content/article/1145622/2133513


I cant seem to find his post, but as well as the article above, I believe it was Dragon Slayer who also mentioned his/your use of an antibiotic proto-call. It's also briefly mentioned on this website: http://coolinginflammation.blogspot.ca/2013/12/antibiotics-gluten-hashimotos.html
Does anybody know how to determine the need for or the kind of antibiotics etc.?
First post here, maybe wrong section?

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#498714 - 12/28/13 05:09 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
Sorry, found the link http://www.roadback.org/
The results from a few kickas'ers didn't sound too promising. Has anyone else had any success?

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#498726 - 12/28/13 12:39 PM Re: Fecal transplant & Helminthic therapy [Re: CoatTails]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
For success stories, check out:

http://thepowerofpoop.com

I think, hope, that quickly it will get to the point of purifying the gut microbes from a healthy person and putting them into pill form as super duper probiotics:

http://www.nbcnews.com/health/poop-pills-are-latest-way-cure-dangerous-c-diff-infections-8C11300066

I can't wait until that day comes. I envision a day where my spondyloarthropathy and metabolic syndrome are both "cured" / improved and maybe I can stop with the drugs for both. 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
#498737 - 12/28/13 07:39 PM Re: Fecal transplant & Helminthic therapy [Re: Sue22]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
Thanks for the reply, Sue 22.
I am also on the quest for my holy grail(a complete cure) A bit optimistic but this site IS called KICKas, not, massageitandtakeitoutonthetownAS.org
Based on the info this site and others have provided,I would like to put together a plan of attack on how to beat this condition. Any advise as to where I would post it so that I could get maximum exposure and/or responses from the helpful kickas.org community?


Edited by CoatTails (12/28/13 07:40 PM)

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#498775 - 12/30/13 08:38 AM Re: Fecal transplant & Helminthic therapy [Re: CoatTails]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
Amen to a CURE and not just a treatment. I am personally committed to KICK AS not just for me, but for everyone with AS. I'm working incredibly hard on this angle. I'm not giving up until we kick this thing for good.

Here's my update on the FMT that I did last July:

I did extremely well until October (about 3 good months). I only had a flare once per month during the time of my period. The flares lasted two days. Intense neck/migraine pain and vomiting. Eye pain as well. Then once the flare was over, I felt pretty good. I was able to eat more widely - even more starchy things like sweet potatoes and gluten-free pizza (with rice/tapioca flour only). It was so awesome to finally gain weight!

I made the mistake in October of taking prednisone. My rheumy and a gastro doc did not think prednisone would harm the gut flora. I believe it must have. Right after taking the prednisone, I flared terribly. I spent two months on prednisone and couldn't get off it again. I was miserable. So, back to the drawing board.

I decided to repeat FMT, but did not use antibiotics prior. As you know, the FDA has done a terrible thing to medicine and progress by banning this for everything but C.DIF. This forces sick people to turn to risky homemade solutions (but you MUST test fecal samples through a lab...don't do this without). I repeated the procedure through two ways to hit the immune system (gut lining) from two directions: enema-like treatment and putting the solution in enteric-coated capsules (yuck, I know, but when you're sick, you'll do what it takes...just google on how to make these). The research is now showing enteric-coated FMT pills cures C.DIF just as well as transplant.

It's now 1 week since this treatment, and I'm completely off prednisone again. I talked to a gastro doc about something to heal the gut lining since I thought it might be damaged from the Klebsiella bacteria. Even with good bacteria, if the lining of the large/small intestines are damaged, the autoimmune reaction will still be triggered if stuff is leaking through the cell walls of the gut. He recommended bovine immunoglobulin...a newer product called EnteraGam. This is apparently better than bovine colostrum in gut repair. We will see.

If this doesn't work, my next trial is going to be doing a more systemic antibiotic. This past July, I only used a 5-day antibiotic when I did the FMT with a doctor's assistance. Now that we're on our own (until the FDA can step out of the way of progress), I decided I will ask my rheumatologist to prescribe a newer antibiotic designed to attack the biofilm Klebsiella may be producing (this is a higher level 14 day antibiotic). Then I will repeat the FMT and continue to work on repairing the gut lining.

My other main concern is the inflammatory increase during menstruation. I really don't know much about regulating female hormones. Every doctor I talk to about this doesn't know anything about the link between the gut and hormones...they only admit there IS a link. Of course, they were all quick to recommend birth control pills to see if this helped, but I know those damage gut lining and may destroy flora. I need to do even more research in this area. I feel hormones are a HUGE part of controlling inflammation.

Pep talk of the day: We WILL find a cure, and we WILL put AS in remission. Every one of us is part of the think-tank and part of the solution. There's just a lot more patience needed in finding a cure than just finding band-aide "treatments." We have to keep asking good questions and finding the answers. It's all about asking the right questions. Thanks to everyone for all your feedback on this!

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#498778 - 12/30/13 10:59 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
thanks lindyap for the update!

What do you think about doing a water only fast (allowing your gut lining to heal) then going straight to a course of FMT with a limited diet? Eventually adding to your diet as the FMT begins to work. My theory is it would be basically starting a FMT with very little bad Gut flora of your own to start with,almost like a complete re boot.

Another question... do you perform a flush before doing an FMT.. like a salt water flush or some kind of colon cleans ?

Thanks
EV
_________________________
Evan

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#498868 - 01/02/14 10:00 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
I red somewhere that the microbiome is changing along the seasons. It might explain why a summer bacteriotherapy is not working anymore during automne/ winter. Good luck.

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#498874 - 01/02/14 05:55 PM Re: Fecal transplant & Helminthic therapy [Re: lool]
Violeta Offline
Fourth_Degree_AS_Kicker

Registered: 04/24/12
Posts: 345
Loc: Pennsylvania
@lool, have you had a fecal transplant?

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#498877 - 01/02/14 07:30 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
I didn't do a water fast, but I had been on a pretty strict paleo autoimmune diet with very little starch/sugar.

I did flush out the colon with a colonoscopy prep. The 2nd time, I just fasted for 3 days...drinking just water and juice.

Still having colon issues, but I'm still off the prednisone after two weeks. I'll report back soon on how I'm doing!

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#499080 - 01/07/14 01:38 PM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Here's my newest thought / question on this:

The appendix holds bacteria. Its job is to replenish the gut with bacteria if we get something like food poisoning or something like that. An ancient way to ensure that our bodies replenish the gut with its supposedly healthy bacteria.

That would be true for someone with a healthy gut microbiome, but what about those of us with an unhealthy gut microbiome? What if we were born that way? What if our appendixes contain unhealthy bacteria in addition to good bacteria?

If we wipe out our gut microbiome by dong say a colonoscopy prep or something like that. And then replace it with healthy microbes, could the microbes in our appendix overwhelm the new healthy bacteria?

Maybe that's why it doesn't permanently work for people with chronic illnesses that are caused by an unhealthy gut? But does work for someone who was healthy but then developed C diff - they have good bacteria in their appendixes.

Has anyone thought about this aspect? Has anyone read about this aspect?

Though I will say, when the FDA allows me to do this via pill-form, I'll be the first to sign up! Right now I'm thinking, it can't be any more risky than taking prednisone or biologics.the only two things so far that have given me any real measure of help.
_________________________


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)

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#499083 - 01/07/14 03:08 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Hi,
We were all prepared to go DIY before Xmas but decided it might stop me from indulging over Xmas so postponed it. Reading on thepowerofpoop they say to avoid any trigger foods for at least three months after if I remember correctly.
Hubby (would be donor) has had fun working out how to prepare 'the sample' with the least yuk factor (he who has never changed a nappy retches at anything other than his own is prepared to prepare sick)

We were all set to go for this weekend but I am currently reading a good book Good Gut Healing by Kathryn Marsden (who practises in the UK yay for once the resources info will be useable). She says that before you can heal the gut you need to tackle other issues first a bit like Violettas comment and Sues thought about the appendix. The symptoms for leaky gut are similar to parasites, candidiasis and others. All of which could have caused the leaky gut in the first place frown

I also found on the powerofpoop that there is a place in the UK that does FMTs. Looking at their site if you were to go that way it would probably need to be the 2 week course 4000 and too far to commute so accommodation needed too. I might ask at my next Rheumy appointment but I doubt you could be referred for AS even though I am not costing anything in medicine the tack I would take.
_________________________
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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#499094 - 01/07/14 08:42 PM Re: Fecal transplant & Helminthic therapy [Re: Grumpyally]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Originally Posted By: Grumpyally
Hi,
We were all prepared to go DIY before Xmas but decided it might stop me from indulging over Xmas so postponed it. Reading on thepowerofpoop they say to avoid any trigger foods for at least three months after if I remember correctly.


This could explain why:

The Gut's Microbiome Changes Rapidly with Diet

Plus, if we don't know which are our "trigger foods", this gets complicated.


Edited by Sue22 (01/07/14 08:46 PM)
_________________________


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)

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#499264 - 01/11/14 09:26 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
Really good info, all.
I'm eagerly awaiting updates on your progress, Lindyap and Grumpyally. I'm curious to know whether the FMT on it's own is enough to alleviate symptoms in AS and for how long. Do we need to get in there and kill the infections or bacteria before, during, after the FMT with anti-biotics? Surely, it won't be a one size fits all situation but progress is progress. Thanks for sharing.

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#499266 - 01/11/14 10:54 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
I'm guessing similar articles have already been posted but here's another encouraging one on FMT/fecal therapy and Chrones. Very small study but 80-90 percent success rate!

http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/


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#499299 - 01/12/14 01:33 PM Re: Fecal transplant & Helminthic therapy [Re: CoatTails]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Originally Posted By: CoatTails
I'm guessing similar articles have already been posted but here's another encouraging one on FMT/fecal therapy and Chrones. Very small study but 80-90 percent success rate!

http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/



Thanks for that information! smile

I will be passing it on to my stepfather who has crohn's.
_________________________


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)

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#499321 - 01/12/14 06:54 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
jroc Offline
Decorated_AS_Kicker

Registered: 10/30/08
Posts: 744
Loc: New Zealand
That one seems to be about Ulcerative Colitis rather than Crohn's. Unfortunately from the small studies available so far, fecal transplants don't appear to be very effective for Crohn's like they can be for C Diff and UC.

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#499326 - 01/12/14 08:34 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
Uh oh, sorry for the tease.

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#500001 - 01/28/14 06:20 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
zark Offline
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Registered: 04/12/02
Posts: 2482
Loc: NSW, Oz
I'm waiting for this to come in tablet form.. then I am up for it ;-)
_________________________
what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)

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#500038 - 01/29/14 03:56 PM Re: Fecal transplant & Helminthic therapy [Re: zark]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Originally Posted By: zark
I'm waiting for this to come in tablet form.. then I am up for it ;-)


I second that!
_________________________


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)

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#500072 - 01/30/14 08:02 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
http://wormswell.com/

First place i have found offering hook worms at an affordable price.

Who is going to be the guinea pig!?!?haha
_________________________
Evan

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#500188 - 02/03/14 10:18 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
nothing new, but they are speaking about tests for autoimune problems :
http://floracor.wordpress.com/2013/12/27...e-applications/

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#500383 - 02/07/14 09:06 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
I received this via email from the Dr at Taymount clinic in England (http://taymount.com/)


ENTEROPATHIC ARTHRITIS AND FMT

We had an interesting conversation that a patient today that we think prompts further investigation and research.
The patient is a 60 year old female with a diagnosis of a 10 year history of Ulcerative Colitis. Prior to FMT treatment she had 7-9 loose bowel movements per day. Today the patient underwent day 7 of a 10-day Faecal Microbiota Transplant program. During this mornings procedure the patient revealed that she had been suffering from Enteropathic Arthritis (EA) for some considerable time. (See below for a brief explanation of EA courtesy of the Spondilitis Association of America).

Overview

Enteropathic (en-ter-o-path-ic) arthritis is a form of chronic, inflammatory arthritis associated with the occurrence of an inflammatory bowel disease (IBD), the two best-known types of which are ulcerative colitis and Crohn's disease. About one in five people with Crohn's or ulcerative colitis will develop enteropathic arthritis. The most common areas affected by enteropathic arthritis are inflammation of the peripheral (limb) joints, as well as the abdominal pain and possibly bloody diarrhea associated with the IBD component of the disease. In some cases, the entire spine can become involved as well.

Is There a Cure?
Currently, there is no known cure for enteropathic arthritis but there are medications and therapies available to manage the symptoms of both the arthritis and bowel components of the disease.

Causes of Enteropathic Arthritis
Many people don't realize that the gastrointestinal tract contains the largest immune system in the body. The immune system is the body's natural defense against foreign invaders, and it is somehow altered in people who have these conditions. Some researchers believe that the long-lasting inflammation found in the intestines of people with IBD damages the bowel, which in turn may allow bacteria to enter the damaged bowel wall and circulate through the blood stream. The body's reaction to these bacteria may cause other problems including inflammation in the joints and/or spine, skin sores and inflammation of the eyes. Currently this hypothesis is neither fully understood nor confirmed by rigorous scientific study.

The patient expressed that she has suffered the pain from the Enteropathic Arthritis for so long that living with it has become part of her life. This morning she realised that the pain from the EA has actually stopped sometime in the last day or two but she cannot be specific as the reduction in pain has actually caught her by surprise.

Whilst academics and physicians are fixated on very large patient numbers when reviewing trials and research, let us not forget the case of Ships Surgeon James Lind of the Royal Navy who carried out the very first medical clinical trial in 1747 on board ship. Lind was trialling the use of Vitamin C to cure Scurvy which was ubiquitous at the time. Linds sample size was an n of 6 (3 in treatment and 3 control). Linds work was considered seminal both at the time and endures today and remember, with only an n of 6. Our observation of a single patient who has remission of the pain of Enteropathic Arthritis following treatment with Fecal Microbiota Transplant therapy, does need more study and we would like to see more specific results, but under Linds Law it also cannot be written off.
_________________________
Evan

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#500413 - 02/08/14 05:36 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
Excellent!

Will be nice when the FDA here in the U.S. allows FMT for more than just C. diff.

Progress, but slow progress.

Thanks for sharing this.
_________________________


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)

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#500415 - 02/08/14 08:00 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Fwd

Dear Evan

The patient was in her second week of a 10-day course. She was on day 7 or 8 I would say.

We do not disclose our methods apart from to say that it is not naso-gastric.

We get a lot of people coming from the USA and Canada to visit us here in the UK for treatment.

The number of treatments is discussed and determined at the consultation with the microbiologist.

Kind regards
_________________________
Evan

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#500417 - 02/08/14 10:56 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
Thanks
If somebody speaks french, here is a great docu about last researchs on gut :
http://www.youtube.com/watch?v=UHXm4MI_zdk

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#500461 - 02/10/14 02:05 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
_________________________
Evan

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#500471 - 02/10/14 07:52 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
thanks smile

Just listened to the whole thing (2nd link)

A lot of it pretty basic background, but two things I really liked:

1. Moving from fecal transplants to probiotics that consist of a mixture of the right bacteria is where we want to head because there may be things we are transferring in the fecal transplants that we just don't know about, don't know what they are, like viruses, etc that we aren't looking at.

2. It was cool how one child with autism had the autism until he took antibiotics, autism went away, stopped the antibiotics, autism came back, went back on the antibiotics, autism went away.child grew up, now in his 20s? working in a microbiology lab. Yes a sample size of one, but still pretty cool.

3. a bunch of talk about effect of diet on gut microbiome.

4. Still how much we have yet to learn.

Very interesting talk. This one is a keeper. Q&A especially good.


Edited by Sue22 (02/10/14 09:18 PM)
_________________________


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)

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#500580 - 02/13/14 05:47 AM Re: Fecal transplant & Helminthic therapy [Re: Sue22]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY


Edited by Sue22 (02/13/14 06:31 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)

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#501169 - 03/05/14 05:54 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
Just an update on my fecal microbial transplant (FMT). After ruining my first one back in August by taking prednsione (it must alter gut flora), I had to do one again in December. I noticed immediate improvement, and I'm down to only 1 flare per month for two days during menstruation (never fails). The only med I'm taking now is LDN, and I haven't touched prednisone or any other anti-inflammatory since mid-December.

Since this has been very successful (aided, I'm sure, by careful diet and NO sugar), the next stage of my journey is to combat hormonal cycles which seem to be causing the flares.

Let me know if you guys have any more questions about this! I'm happy to answer questions. I think FMT is a good route, but not a full solution. It's just taking time to rebuild.

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#501199 - 03/07/14 12:09 AM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
thanks for the update!

and fingers crossed it keeps going well.
_________________________


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)

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#501380 - 03/12/14 11:17 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
coopatroopa Offline
Member

Registered: 05/13/13
Posts: 36
How many rounds of FMT did you do Lindyap?

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#501840 - 03/26/14 03:53 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
http://chriskresser.com/all-about-fecal-microbiota-transplants?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+thehealthyskeptic+%28Chris+Kresser%29
_________________________
Evan

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#501868 - 03/27/14 12:37 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Wow thanks for posting this, I have just listened to it, it would be nice if I could get my rheumy to refer me (in my dreams) It isn't local but at least its in the UK!
_________________________
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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#501869 - 03/27/14 12:51 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
I am setting up a consult...strongly considering making the trip
_________________________
Evan

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#501873 - 03/27/14 02:40 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Please let me know how you get on and if they think it can work for you I've been trying to work out which price band it would be!
_________________________
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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#501917 - 03/28/14 07:59 PM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
L33 Offline
Apprentice_AS_Kicker

Registered: 07/17/13
Posts: 77
Loc: South Africa
Originally Posted By: Lindyap
Just an update on my fecal microbial transplant (FMT). After ruining my first one back in August by taking prednsione (it must alter gut flora), I had to do one again in December. I noticed immediate improvement, and I'm down to only 1 flare per month for two days during menstruation (never fails). The only med I'm taking now is LDN, and I haven't touched prednisone or any other anti-inflammatory since mid-December.

Since this has been very successful (aided, I'm sure, by careful diet and NO sugar), the next stage of my journey is to combat hormonal cycles which seem to be causing the flares.

Let me know if you guys have any more questions about this! I'm happy to answer questions. I think FMT is a good route, but not a full solution. It's just taking time to rebuild.
I have recently completed my second fecal transplant but with little results. On the the first treatment my inflammation levels dropped completely and I was pain free for about 1.5 days then the pain returned.

On my second attempt there was no change.... I think the trick is to get your new donor bacteria to take hold in your system and this is not that easy and requires a diet + repetition which nurtures the good bacteria.

I now strongly believe the root cause(trigger mechanism) of AS is in the gut, since when I followed the protocol which I was using which included flushing my system and a small fast. My pain levels went from through the roof down to nil!

I have done an ESR and a CRP blood test prior to doing my first FMT to see if there is any reduction in my level of inflammation.I was shocked to see that my CRP was 5 times higher than the Healthy reference. Hoping to bring it down to normal levels.

@ Lindyap, can you please elaborate on the diet you where on & good luck.

I think we need to throw out the yuck factor and look from a scientific perspective since we are made up of about 90% bacteria and 10% human.....

Please see this very interesting video.....

http://www.youtube.com/watch?v=ZP2CViHdvbg

Lee
_________________________
HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22
ACV treatment see here https://www.youtube.com/watch?v=iputWQ1JHT8
https://www.youtube.com/watch?v=KQghiDNGp3s
https://www.youtube.com/watch?v=FVDbTmFOsxg

Phase 1 ACV
Phase 2 ACV + No Gluten/wheat products(Tested positive Allergies)
Phase 3 ACV + NSD + High fat (Energy)

"See you in the Sun" "Impossible is nothing"

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#501947 - 03/30/14 05:07 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
I am looking into 2 weeks of 10 treatments...this is feceal microbial (not matter) transplant. I also believe all bacteria must be eliminated by fasting or antibiotics before starting. By doing this alone could put one into remission so it will take a few months before I am for sure the fmt worked
_________________________
Evan

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#501963 - 03/31/14 03:48 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Yeah that's about what I thought. It was interesting listening to him talk, pointing out that the extraction needs to be in anaerobic conditions and into the right medium! I would have thought keeping the temperature correct was important too for DIYers. More thinking required if a DIY!

I was thinking along the same lines for prep but by using enemas. If you look at the clinics website they do talk about colonics in preparation (which if I remember rightly I think was with the onus on you to sort beforehand).

We were also thinking about trying a DIY one first without complete preparation just to see what happened. Thinking (ignorantly) that if they are any adverse affects they would be less because your gut wasn't empty and your own albeit bad bacteria was there to put up a fight laugh. Then you would feel better stumping up the money to have it done properly!
_________________________
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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#502245 - 04/07/14 12:51 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
drizzit Offline
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Registered: 02/25/06
Posts: 1483
Loc: Montana
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

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#502254 - 04/07/14 09:43 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
thanks for the link
_________________________
Evan

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#502263 - 04/07/14 02:45 PM Re: Fecal transplant & Helminthic therapy [Re: drizzit]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Interesting a bit too technical for me though I will have to read it piecemeal to take it in.

However from reading posts on here and now mentioned in the article I could blame the origins of my AS to a bout of illness (severe both ends at once and only me) some of what I now know were mild AS symptoms began soon after.

I then suffered an episode 7-9 years later of possibly Norovirus followed by monthly recurrent week long upsets with a food poisoning episode in between frown I think I went downhill after that. The Norovirus (baby 11 months old) was post caesarean and antibiotics for a post op infection plus antibiotics for mastitis before I discovered a drug free remedy for mastitis mad. Previous to my caesarean I had never had any antibiotics previous to my caesarean and never suffered any major stomach upsets/food poisoning.

It is all to do with the gut IMHO.

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

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#502903 - 04/29/14 01:06 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104

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#503466 - 05/16/14 04:02 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Its great to hear stories that back up this theory...I head to Taymount clinic in England Oct 20 for 15 days of Feceal Microbial Transplants..cant wait..as you can see pretty long waiting list. I also have a good friend that will be doing a 5 courses of FMTs followed by 'poop' pills next week.

I believe FMTs are going to become mainstream in the future as antibiotics are starting to fail in some situations. We are pioneers just talking about this treatment.
_________________________
Evan

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#503685 - 05/26/14 03:07 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Thought you might find this interesting it was posted on a Yahoo group I subscribe to. The person who posted this used FMT to heal their UC.

"Don't give up on FMTs. Many who post on the Powerofpoop private Facebook page say doctors (those who understand FMTs) are saying to do 10 transplants for 10 days in a row, then three a week for a while, then one a week... just taper off. Some say inflammation must be under control first but I did my transplants when I was very inflamed and it took. I think everyone is different as to which bacteria they need or now much or how long it takes to get established as a permanent colony in your gut. If one donor doesn't work well, try another donor.

In Australia where they are doing FMTs for UC, Crohns and IBS they take several donors and mix it together, to give a larger range of bacteria in the implant. They do one transplant by colonospy and then send the person home to do follow up" transplants at home.

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

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#503699 - 05/27/14 05:50 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
Link to an article on today FMT on the BBC

http://www.bbc.co.uk/news/magazine-27503660

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
#504500 - 06/23/14 09:51 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
Parasitic worms of pigs could provide new treatments of human diseases

New treatments for inflammatory bowel disease, rheumatoid arthritis, multiple sclerosis, diabetes and autism could be on the horizon, after a global University of Melbourne-lead study successfully mapped the genes of a parasitic worm in pigs

http://www.eurekalert.org/pub_releases/2014-06/uom-pwo061214.php

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#504517 - 06/23/14 03:05 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
Faecal transplants claimed to cure the incurable

http://www.abc.net.au/lateline/content/2014/s3966636.htm

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#506025 - 08/23/14 08:22 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Hey,

A buddy sent me this link of a video on Bacteria pretty interesting.

Catalyst - 'Gut Reaction'(2014)

part 1: https://www.youtube.com/watch?v=w94D45txSxo

Part 2: https://www.youtube.com/watch?v=CfDpM9D_if4&list=UUFwh-arPtv2aUmvqNwrG-Ow
_________________________
Evan

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#506512 - 09/18/14 10:52 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Grumpyally Offline
Black_Belt_AS_Kicker

Registered: 01/24/12
Posts: 419
Loc: UK
A link to someone's blog about their visit to the Taymount clinic in the UK to heal her leaky gut.

http://dysbiosis.tumblr.com/

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
#506857 - 10/02/14 08:26 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
Just an update for everyone. Here is what I've undergone:

1) 5 day FMT treatment after 2 week antibiotics
2) Took prednisone during a flare, and it either messed up the gut flora, or as my rheumy guessed, it could have overfed a yeast culture that destroyed the good bacteria.
3) Went through a couple more FMT treatments and went home with new capsule form.
4) Symptoms did improve 50-60%. I was down to only one flare per month (2-3 days), and this always surrounded menstruation. If I didn't have a period, I'd probably have no flares at all.
5) I did another round of FMT capsules.

Results: I'm still flaring during periods, and my last x-rays definitely showed progression of AS. Not terrible, but enough to make my rheumatologist say, "Get back on biologics or try the new Otezla."

I'm trying to determine now what direction to go. I could keep suffering just once a month, but I'm worried about my spine. I really wish this had been the cure, but in my best guess, it would need continued treatment to really heal the gut and keep the good bacteria winning. I think for some reason, the good bacteria can't seem to thrive in my gut (despite a careful diet).

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#506865 - 10/03/14 04:17 PM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21295
Loc: Upstate NY
lindyap, sorry this hasn't been the treatment you were hoping it would be. hugss
_________________________


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)

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#507051 - 10/13/14 09:14 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
CoatTails Offline
First_Degree_AS_Kicker

Registered: 12/09/13
Posts: 169
Has anybody ever made an attempt to clear SIBO, candida, biofilms before an FMT?

I'm attempting to rid myself of all of those problems over the next 6-9 months. I'm also taking abx(which causes candida) for 5 more months. My plan is to start with a "clean slate" and then do an FMT afterwards but would love to know if anybody else has done/heard anything similar?

re:Lindyap. Did your rheumy or anyone else explain why they chose to use antibiotics prior to treatment? All of the clinics I look into do the same but I can't make sense as to why. Can we not assume that the abx will make it tougher for the probx(fmt) to colonize? Maybe they want a "clean slate" as well? But what are they attacking with that abx? Do you know which kind of abx you used?


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#507080 - 10/14/14 07:36 PM I want this now! [Re: evand1991]
Timo Offline


Registered: 07/16/01
Posts: 3333
Loc: BC, Canada
Quote:
Fecal transplants just got easier to swallow. The procedure, in which the bacteria from a healthy gut are implanted into an unhealthy one, has gotten a lot of buzz over the past year. But the treatment generally requires a colonoscopy a procedure that's both uncomfortable and expensive.

In a study published Saturday in the Journal of the American Medical Association, researchers report that the same success rate can be reached by processing the healthy excrement into capsules and administering the pills by mouth.


Quote:
But several companies are working on commercializing encapsulated fecal donations (or trying to create cocktails of bacteria that have the same effect on a patient's gut), and they're banking on wider uses eventually coming to light and getting FDA approval. "The human microbiome is just an exploding area of science," Hohmann said, "and we're still figuring out what we might do with these communities of bacteria."

Other diseases of the gut like inflammatory bowel syndrome and Crohn's disease are next at bat. But theoretically, FMT could even be used to treat obesity.


http://www.washingtonpost.com/news/speak...splants-orally/
_________________________
Timo

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#507087 - 10/15/14 07:17 AM Re: I want this now! [Re: Timo]
Grumpyally Offline
Black_Belt_AS_Kicker

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

I have read that if you have SIBO a 'pill' is not the way to go, bottom up is better as it doesn't make it as far the small intestine.

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
#507195 - 10/20/14 11:02 AM Re: I want this now! [Re: evand1991]
lool Offline
Journeyman_AS_Kicker

Registered: 09/21/13
Posts: 104
http://www.medpagetoday.com/MeetingCoverage/IDWeek/48060

Case Study: Fecal Transplant Clears K. Pneumoniae

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#507461 - 11/03/14 05:03 PM Re: I want this now! [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
just finished day 11 of 15 at taymount..woke up and noticed my TMJ pain is gone..also i've noticed my joints starting to crack again in a good way. my IBS was healed a week ago too.

Before treatment I debated for a long time on whether to take anti-biotics or not I even had a prescription. Instead after reading some horror stories i decided to do intermittent fasting, low starch/fibre diet along with natural antibiotics for two weeks. I used oregeno oil with Berberine and Echinacea.

http://www.naturaldigestivehealing.com/blog/2011/08/19/natural-anti-microbial-supplements-for-ibd/

Ev
_________________________
Evan

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#507462 - 11/03/14 05:06 PM Re: I want this now! [Re: Timo]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Timo, ..are these Studies for C-DIFF?

Ev
_________________________
Evan

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#507463 - 11/03/14 05:15 PM Re: I want this now! [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Sorry i guess i should read the article, C-Diff is not as tricky to rid with FMTs with a 90% cure rate. my concern is would these pills be beneficial for more refractory cases. It all depends on how much oxygen the microbes are exposed to in the preparation process.
http://taymount.com/about-us-fmt/frequently-asked-questions/#q4
http://link.springer.com/article/10.1007%2FBF01568901
_________________________
Evan

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#507539 - 11/07/14 02:15 PM Re: I want this now! [Re: evand1991]
crv Offline
New_Member

Registered: 03/18/14
Posts: 18
Loc: Montreal, Canada
Originally Posted By: evand1991
just finished day 11 of 15 at taymount..


Wish you luck, Evand!

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#507546 - 11/07/14 10:22 PM Re: I want this now! [Re: evand1991]
JoeyG Offline
Lurker

Registered: 11/07/14
Posts: 1
Evand,

Great news so far with the FMT. Wishing you the best of luck. Just wondering if you could divulge the cost of the treatment. I have looked into this and also Helminth therapy. Considering doing one or the other...

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#507680 - 11/17/14 03:59 AM Re: I want this now! [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Hi Joey,

Well Helminth is a lot cheaper. my treatment was $12 000 CAN. that is with out flights and my stay there..prob close to 18-20gs all said and done for 15 treatments and 5 treatment to take home and put in the freezer. http://taymount.com/treatment-fees/

Best of Luck
Ev
_________________________
Evan

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#508004 - 12/11/14 12:50 AM Re: I want this now! [Re: evand1991]
belzarek Offline
New_Member

Registered: 02/14/13
Posts: 4
this guy from taymount "glenn taylor" is a dickhead that overcharges desperate people for enemas,he's not even a doctor or anything.if I was living in england i would love to give him an ano-oral fecal matter transplant..
daring to charge so much for an enema FMT is preposterous even with screening etc. (like if not giving you pathogens was actually doing you a favor,thanks for not killing your CLIENTS...)


Edited by belzarek (12/11/14 12:50 AM)

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#508188 - 12/21/14 08:47 PM Re: I want this now! [Re: belzarek]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Why?
_________________________
Evan

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#508555 - 01/10/15 12:13 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 61
Loc: SF Bay Area, CA, USA
Question for those who have done this (I've read a lot of the thread and it's not clear to me):

How often does this have to be done? If it's once every few weeks, I could probably do it with my husband as a donor. I can probably convince his doctor to test him for C. diff. If it's several times a week or even daily, I'm not sure how practical this is.

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#508696 - 01/15/15 09:48 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Depends what you are doing it for...C diff can be cured in 3 sessions. but more refractory cases can take 10 plus days in a row..with top ups every few months.
_________________________
Evan

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#508872 - 01/23/15 11:19 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 61
Loc: SF Bay Area, CA, USA
Well, I'm talking about for AS. If it's a big initial course but then only every few months, I can do that. If it's multiple times a week forever, that's a bit less practical.

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#508888 - 01/23/15 09:04 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Active_Member

Registered: 06/20/12
Posts: 74
Loc: Ottawa valley, Canada
Well mike i did it 15 times in a row..unfortunately didnt work for my AS..did help my IBS though and anxiety
_________________________
Evan

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#509882 - 03/15/15 02:04 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 61
Loc: SF Bay Area, CA, USA
Yeah, I've been reading through this and I haven't seen reports of dramatic improvements in AS symptoms with FMT.

I have zero "ick" factor for this. It's just a lot of effort if it doesn't work.

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#509932 - 03/19/15 04:16 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Dreamer Offline
Member

Registered: 05/28/14
Posts: 42
Loc: Arizona, US
To piggyback on Mike's question: I too have seen lots of reports of improvements in UC/IBD/C Diff- but not AS specifically. (Except maybe Betty Rawker posted about a friend with AS who got better?) So, if anyone out there knows of improvement in AS specifically, could you let us know? Sound off and it'll be much appreciated! smile

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#510097 - 03/30/15 10:36 PM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
I had two FMT treatments, and now I supplement periodically with pills.

I think the FMT treatments helped me get about 60% improvement, but the results don't seem to last.

I'm very curious if the Klebsiella bacteria is just so aggressive that the numbers die back and then just come back again.

I'm almost thinking of going through a bigger antibiotic regimen, but I'm unsure of my next steps. I have to go towards the FMT route again since biologics have failed me again.

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#510870 - 05/10/15 06:20 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
boz Offline
Active_Member

Registered: 05/04/15
Posts: 63
Loc: Norway
Anyone have experience with diy FMT? Would you see any problems with trying this at home with FM from my significant other?
_________________________
Norway

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