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#518778 - 06/13/18 07:23 PM Keystone Approach probiotic guide
j87x Online   content
New_Member

Registered: 06/06/17
Posts: 21
https://keystonebook.com/probiotic-guide/

Here is Rebecca Fett's rough draft of the updated probiotic guide for people with rheumatoid conditions. I believe the guide is still being updated, but this provides enough info for those scratching their heads trying to figure out which probiotic to try.

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#518785 - 06/17/18 01:59 AM Re: Keystone Approach probiotic guide [Re: j87x]
Janclebro Offline
Member

Registered: 09/26/16
Posts: 31
Loc: Cape Town, South Africa
Thank you so much for posting this - this is the most exciting thing I've read since discovering the no-starch diet twenty months ago. Through your link I also read the preview of her book with her story. I'm planning to hunt down and buy the book today. I've been trying so hard to research these things online, but it's difficult without access to scientific papers. I've a feeling a lot of my questions are about to be answered. Thank you!
_________________________
Spondyloarthropathy with symptoms of AS, Sjögrens and fibro. Previously took Celebrex, Methotrexate, Trepiline, Prednisone which seemed to trigger a flare and my illness became much worse. Symptoms now kept mostly under control with NSD, as well as cutting sugar, dairy and yeast and food intolerances. Mostly pain free now and all symptoms massively improved.

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#518796 - 06/27/18 01:22 PM Re: Keystone Approach probiotic guide [Re: Janclebro]
j87x Online   content
New_Member

Registered: 06/06/17
Posts: 21
I have also seen quite a few success stories about scd homemade 24 hour goat yogurt. I ordered a yogurt maker and will be trying this myself.


Edited by j87x (06/27/18 01:22 PM)

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#518797 - 06/28/18 03:38 PM Re: Keystone Approach probiotic guide [Re: Janclebro]
Ann1965 Offline
New_Member

Registered: 06/17/18
Posts: 10
I am newly diagnosed in May 2018, with Ankylosing Spondylitis at the age of 54, female HLA-B27 negative, ANA positive C-RP 24, probably due to going off of my gluten free diet and eating everything and anything carb as my mom passed away. I had severe reactions to Humira. My rheumatologist said he read that biologics do not stop the progression of the disease, just help with pain. I am doing a no/low starch diet and feel amazing and have lost 15 lbs. My concern is will this slow the progression? I am taking Turmeric/Curcumin for pain. The doctor just laughed at me when I told him I wasn't taking NSaids. Do others of you have input on going the natural route? I have another appointment with a new rheumatologist on July 3, but not wanting to do biologics. Have a wonderful day,

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#518800 - 06/29/18 03:44 AM Re: Keystone Approach probiotic guide [Re: Ann1965]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 284
Originally Posted By Ann1965


The doctor just laughed at me when I told him I wasn't taking NSaids. Do others of you have input on going the natural route?



I have in the past posted many times on this Forum about how I have no belief whatsoever in so called natural medication as a treatment for A.S. If such things worked then the rheumatologists would be prescribing such treatment to us all. I had better say no more on this now as I have been criticised in the past for posting such things on this Forum.

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#518810 - 07/04/18 05:08 PM Re: Keystone Approach probiotic guide [Re: j87x]
mulehound Offline
Commanding_AS_Kicker

Registered: 04/27/09
Posts: 676
Loc: USA state of Utah


NSD Worked for me. I have the support of numerous Doctors now who were skeptics at first. They range from an allergist, Family Doctor,Head of Rheaumatology and a PA. I have even talked to people about my success when asked by one of the above.
But in all honesty I do not know if it works for everyone. It has worked for me but I don't know if that is the case for everyone, I suspect not. A lot of people have success with biologics etc, That's great everyone needs to find what works for them.
i wish you the best of luck.
ETTE.
Darrel

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#518821 - 07/08/18 10:01 PM Re: Keystone Approach probiotic guide [Re: j87x]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 131
Loc: Toronto, ON
J87x - thanks so much for sharing this! This is really helpful. Along with NSD, I alternate probiotics with herbal antibiotics as part of the 'weed and seed' protocol recommended by my naturopath. But the usual mixes of probiotics of lactobacillus and bifido species always seem to result in rosacea flares and constipation. I hope this narrower list will help me focus on the specific strains that may be helpful so I can experiment with a more targeted approach and hopefully avoid the strains that cause my unfortunate side effects.

Ann - thanks for sharing your story. I'm so sorry, sounds like you had a tough time leading up to your diagnosis. Sorry for the loss of your mom.

At the heart of AS is inflammation, so if you can prevent that you can stop the disease from progressing. Biologics work by blocking one of the inflammatory proteins that affect the joints. That reduces the inflammatory reponse and slows the progression, hence the incredible pain relief many people experience. NSD works by starving the bacteria that lead to the inflammation in the first place. This reduces their population which in turn reduces or even eliminates the inflammatory response, which means you can halt the disease progression. Add in some form af antibiotic treatment to further reduce the bacterial population, and you may even be able to move beyond NSD some day (I believe the founder of this site can eat starch freely now). What is irreversible - so far - is the ankylosis, which is the new bone formation that fuses the joints. But you can definitely stop that from getting worse.

Many posters here report that their health care practitioners have been dismissive of the diet but it's hard to argue with results. And this place is full of success stories, my own included. Sounds like you're already getting positive results so keep it up and good luck!
_________________________
Suspected SpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519003 - 08/23/18 11:44 AM Re: Keystone Approach probiotic guide [Re: j87x]
j87x Online   content
New_Member

Registered: 06/06/17
Posts: 21
Has anyone tried Galacto-oligosaccharides (GOS)? Brand name Bimuno, they have other brands on amazon. This is the only prebiotic that is supposedly safe for AS, it's shown to feed mainly bifido bacteria.

There are some positive reviews: "I have been taking Bimuno (1 sachet) in morning coffee for about 3.5 months. I read a review from 'Lanette" dated june 2016 indicating her Dr. recommended she take this for all over body pain. He said it really works. Good bless whoever this Dr. is (:

Well, I can attest, as someone who had been crippled for years with pains all over my body, that this product **really does work**. The overall pain has been reduced by approximately 85%!!!!! This has saved my life, as I refused to take the opioids my rhuematologist suggested.

I also had stool issues, which the Bimuno cleared up."

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#519049 - Yesterday at 07:05 PM Re: Keystone Approach probiotic guide [Re: j87x]
j87x Online   content
New_Member

Registered: 06/06/17
Posts: 21
https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-018-0819-6

VSL#3 did not change gut flora, but impacted immune system components. Findings suggest that the beneficial anti-inflammatory effect of this preparation in patients with autoimmune and allergic disorders may be related to reduced production of cytokines rather than to changes to gut microbiota.

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