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#498775 - 12/30/13 07:38 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 09:59 AM Re: Fecal transplant & Helminthic therapy [Re: evand1991]
evand1991 Offline
Apprentice_AS_Kicker

Registered: 06/20/12
Posts: 75
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 09:00 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 04:55 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 06:30 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 12:38 PM Re: Fecal transplant & Helminthic therapy [Re: Lindyap]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
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 02:08 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 07:42 PM Re: Fecal transplant & Helminthic therapy [Re: Grumpyally]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21342
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 07:46 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)

Top
#499264 - 01/11/14 08:26 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 09:54 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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