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#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

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#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)

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#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)

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#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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