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#519566 - 04/03/19 02:47 PM 3 month NSD, still no results, sad and annoyed
Bazel Offline
New_Member

Registered: 12/28/18
Posts: 15
Hi guys,

I wish I could celebrate with you guys, but I still have not had any results with the NSD. I ate some starch and some sugar a week ago and nothing happend. The embrel is kind of working. But sadly not enough. It wont reach my foot, meaning it will deteriorate over time, making it hard to walk in the future. Other areas are better, but not fully free of inflammation.

My diet is still: fish, meat, veggies (courgette, spinach, cucumber, radish, andive). I removed eggs for 2 weeks, which I added again, no changes. I added 2 spoons of coconut flour last week. I supplement vitamins (C, D, fish oil), L-glutamine, magnesium (malate, taurate).

My hypothesis is, and I would like your opinion, that my IBS is slowing down the process. I have had IBS for 8 years with a lot of stomach pain, probably severe SIBO, diarrhea, fatigue, memory problems, you name it. I can imagine that the bacteria will not find balance on merely the NSD. Is that a possibility? Or am I just still doing something wrong?

I have done stool and blood tests for allergies, will get them soon. Then I aim to get specific antifungals, aimed at the problematic bacteria. Maybe then the NSD will start working for me.

P.S. By accident I read that cucumber seeds contain starch. Is that really a thing? Geeze, haha.

Thanks guys,

Bas

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#519569 - 04/03/19 07:04 PM Re: 3 month NSD, still no results, sad and annoyed [Re: Bazel]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 161
Loc: Canada
I'm so sorry Bas, this must be really frustrating. With the severity of your symptons, NSD may indeed not be enough.

I've posted quite a bit about the weed and seed protocol that my naturopath introduced me to....6-8 weeks of probiotics followed by 1-2 weeks of herbal antibiotics (e.g. berberine, peppermint oil, oil of oregano, caprylic acid, etc.) It has really worked for me (NSD reduced my pain but this protocol helped me have my first pain free days).

Are you taking a probiotic supplement? I have known many people with severe IBS who have improved dramatically just by adding large amounts of probiotic supplements. Can't recommend this strongly enough as a first step, and one to take before trying herbal antibiotics. And I do mean large amounts - I took mine 3x day for at least 6 months (though I started slowly - 1x day at first)

My own favourite probiotic is Garden of Life Primal Defense Ultra, which contains b. subtilis, a soil-based probiotic known to help with chronic diarrhea. But there are lots of good ones out there.

The other thing that I find helpful for joint pain is gelatin powder. The NSD can stop progression but joint regeneration takes a long time. I first tried it years ago when I was so debilitated I struggled on stairs. I saw great improvement after a few months of the gelatin (1TB 2x daily mixed in water). Collagen hydrosolate does the same thing but dissolves better.
_________________________
Suspected USpA. 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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#519574 - 04/04/19 07:20 PM Re: 3 month NSD, still no results, sad and annoyed [Re: Bazel]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6089
Loc: Reno or SFLU Philippines

Hello, Bas:

Ebringer always said that it takes 3 months to 'learn' the diet and another six months for it to work. I would suggest that often our perceptions are not so accurate. When I first began the strictest NSD, I thought I was not progressing for a very long time, until I noticed that minor pains were just not there anymore; slowly, they had released their chronic grip on me. It is the big pains that peg our pain indicators so we cannot gauge the small stuff.

If You are not adverse to it, I recommend Flagyl (metronidazole) because it not only has some anti-K.pneumoniae properties but also its primary use against giardiasis can be very helpful in AS in general as many cases began with this specific infection.

Also, please add EVOOil and while still in a flare it is good to take borage seed oil (4-6g) just before retiring which should help avoid some morning stiffness.

When I used antibiotics and got rid of my SIBO, my AS stopped totally and has been inactive since--knock wood! It took many years but that was a trial-and-error experimental period, so perhaps today I could take down AS more easily. Mine was also exacerbated by permeable gut caused by years of NSAID usage.

So YES to Your hypothesis that leaky gut slows down the process of relief from AS!

The best way to heal this is fasting and then supplements missing are the oils, lysine, niacin/niacinamide, vitE, zinc, and gut-friendly foods like okra, lychee fruit (in cans at Asian markets), a probiotic yoghurt (in small--2oz per day max--amounts), and bone marrow soup or bone broth. Kim chee or sauerkraut can also help a great deal.

The tiny amount of starch in cucumber seeds should not bother us if we eat whole cucumbers and do not process the seeds separately like nobody I know does . . . but they could be out there!

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#519575 - 04/05/19 05:58 PM Re: 3 month NSD, still no results, sad and annoyed [Re: DragonSlayer]
Bazel Offline
New_Member

Registered: 12/28/18
Posts: 15
Thank you John and Kelly, once again.

It's good to hear that when you fixed SIBO, you also fixed AS. This gives me hope still.

I do use oil and the supplements. I will have more patience. I use expensive biological extra virgin olive oil. Is that okay too? You name EVOlive oil specifically, does it have any unique properties?

On wednesday I will get the results of my stool test. Then I can see if there is SIBO, and what kind of bacteria. Blood test also shows food intolerances. I will need another test for the specific intolerance, which I will soon get.

Then I will get the probiotics and antibiotics. The center that tests my stool comes up with specific pro and antibiotics as an advice. The center is not very experienced with AS particularly, so theyll just focus on SIBO. I will have to take their advice with a grain of salt.

When I get the results and advice, I will make a new diet and new probiotics and anti fungals. I would like it if you guys would look at my newest plan after wednesday.

Thanks for the technical and moral support. This thing is becoming my Everest. Though it seems I am still on the right track.

-Bas

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#519576 - 04/07/19 10:55 AM Re: 3 month NSD, still no results, sad and annoyed [Re: Bazel]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 161
Loc: Canada
What an interesting approach! I suspect this kind of balancing of the microbiome is the future of medicine, not just for AS and IBS but also severe allergies, cancer, and even autism (promising work already underway).

Please, please,please share your results and new plan. I'm really keen to hear more about this.

Also, John makes a good point about how we experience pain and improvement. I saw an unmistakable improvement after just 2 weeks of NSD - my fingers were less swollen and sore, my all over body stiffness disappeared. So I knew the diet worked. But after those were gone it's almost like I forgot about them, as I became focused on the other lingering pains in my back, neck and knees.
_________________________
Suspected USpA. 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

Top
#519577 - 04/08/19 01:56 AM Re: 3 month NSD, still no results, sad and annoyed [Re: Bazel]
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 34
2-4 months into the diet is the hardest part. Sounds like you're on the right track trying new things and keeping track of whats working and whats not. Keep going, don't stop...you're worth the best health you can give yourself.
_________________________
Diagnosed with AS 2018, MRI Sacroiliac joint: HLB27 +: uveitis
NSAIDS,
Peripheral (hands, jaw, knees)
LSD - 2018, NSD - 2019, AIP June 2018

Some nuts (not me, what I eat)
No dairy
Some egg
Some low carb fruit


"a laptop scientist and everyday researcher committed to health"

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