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#519424 - 02/10/19 02:01 PM 4 months into NSD and FRUSTRATED!
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 37
Still feels like my hips are a big bowel of pain, especially when I'm sitting down. I've been strict NSD Keto for 2 months and feeling discouraged. Been on low starch for 4 months. My best bet is probably fast for 3-6 days or until the pain is gone, start with my perfect food, chicken and then add one food every 2 days while food journaling and monitoring. I just really don't want to! Giving up even more food is not my idea of fun. Need one last push of motivation, inspiration and self control to pull this last elimination diet off. If this one doesn't work, I'm calling the rheumy and going on biologics!


Edited by iamhealth123 (02/10/19 02:02 PM)
_________________________
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"

Top
#519425 - 02/10/19 06:46 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Don't give up!!! The NSD works, it's just really frustrating lol. Especially early on. Hang in there, it's so worth it.

I did strict NSD for months with some positive results but even the smallest slip (deli meat, apple, small piece of cheese) set me back. Not all the way, but enough to frustrate me. I didn't really see lasting results til I saw a naturopath who recommended alternating 1-2 weeks of berberine with 6-8 weeks of high quality probiotics. After a few rounds of that I was not only pain free, I could eat starchier foods. Now I cheat regularly with few consequences. others have found success just with probiotics. If you're struggling with just NSD, her are some other options. (I tried fasting but failed miserably).

Have you tried anything for joint healing? I take gelatin and it works wonders. I know people who have tried collagen hydrosolate (more or less the same thing) and swear by it, including one woman with several eroded discs.

In the meantime, I'm curious to learn more about your peripheral joint pain. Fingers and knees are my most persistently painful joints but these appear to be very uncommon symptoms. (It's only when my diet gets really bad that I experience flares in my hip, back and neck).
_________________________
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
#519426 - 02/10/19 09:01 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 37
Thank you for your response! Deli meat last week, 2 slices of pear this morning, cheese on my fish last week. Yeah I'm strict, but I guess not strict enough! I'm taking probiotics right now but along side ACV - I'm wondering if that's not such a good idea? Maybe I should do one day on ACV and one day on probiotics to alternate? I've been doing a pot of bone broth weekly for about 6 months - my gut loves it! The sulphalazine takes care (almost) of my hands. Doesn't touch the hips and back. I think I just need to eat just chicken and a few veggies to get myself to where I'm almost pain free, then I'll be motivated to continue
_________________________
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"

Top
#519427 - 02/10/19 09:17 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 37
Kellybells thanks again for your encouraging response. What brand of probiotics do you use? I've been using 48 hour fermented homemade yogurt and natto
_________________________
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"

Top
#519428 - 02/10/19 11:16 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Originally Posted By iamhealth123
Thank you for your response! Deli meat last week, 2 slices of pear this morning, cheese on my fish last week.....I think I just need to eat just chicken and a few veggies to get myself to where I'm almost pain free, then I'll be motivated to continue

Well, those are some likely culprits! My first few months were incredibly frustrating. I'd have what I thought was a perfect clean day only to wake up the next day with stiff, swollen fingers. (a grapefruit, a bottle of apple juice, carrots....foods i thought would be fine...til they weren't). After that I tested absolutely everything with iodine and ate a base diet of eggs/chicken/beef/pork, zucchini, spinach and asparagus. And then I slowly added from there. But like i said, I didnt really see things move forward til I tried the berberine/probiotic cycle.

My favourite probiotic is Garden of Life Primal Defense Ultra. Very important to get the Ultra - it contains b. subtilis, which is the bacteria that I suspect has helped crowd out the bad bacteria. In a healing phase I take it 3x day (2x day the rest of the time)

Glad to hear about the bone broth - I do the same, I just love it!

Sounds like you're on the right track, and just running into the same road blocks we all did at first... It takes awhile to figure out what is safe and what isn't. You'll get there!!!
_________________________
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
#519429 - 02/10/19 11:27 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Originally Posted By iamhealth123
Kellybells thanks again for your encouraging response. What brand of probiotics do you use? I've been using 48 hour fermented homemade yogurt and natto

I still can't tolerate yogurt so you might try dropping it for awhile if you don't feel better soon. I couldn't tolerate any dairy in the first few months, even the hardest of cheeses (which are very low lactose)

Natto is a bit trickier....it's high in starch because of the beans but the bacteria, b.subtilis is likely very beneficial to the gut. I tried eating small amounts every day for a few weeks last summer and some minor finger stiffness. It was fairly mild and bearable but if you're trying to get to a zero pain baseline you might need to drop it for awhile too and stick to probiotic pills,
_________________________
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
#519433 - 02/11/19 02:11 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 37
Thanks Kellybells
Plan moving forward: ordered filling free Berberine online. Probiotics: ordered. In the meantime, shots of AVC, oil of oregano and colidal silver until the Berberine comes thru. No yogurt. natto I will try at a later date, (I will give it an extra ferment in the slow cooker, then mash up the beans and do another 24 hour ferment so the b. subiltis eats thru the starch). Cheese is going into the freezer.
_________________________
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"

Top
#519435 - 02/11/19 08:53 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Sounds like a plan! Good luck, hope you find some relief. smile

Your experience is so familiar - especially the early frustration. But I got better and I really hope you do too. The NSD has changed my life, I am pretty much med free (NSAIDS only when I get headaches from being super cheaty). And 2 years later I can tolerate a lot more starch now. And when I get cheaty (and boy do I get cheaty) and flare up I know exactly what to do to get better again.

p.s. glad you kept the cheese and put it in the freezer instead of the bin...I couldn't eat it for months but now I eat a little bit almost every day, pain free!
_________________________
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
#519437 - 02/12/19 12:56 PM Re: 4 months into NSD and FRUSTRATED! [Re: Kellybells]
iamhealth123 Offline
Member

Registered: 01/22/19
Posts: 37
And the flair is gone! About 3 out of 10 pain while sitting, 1 out of 10 when I'm moving around! When you cheat now and the pain is back, does it take less time or more time to go back to zero out of 10 pain?
_________________________
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"

Top
#519451 - 02/16/19 05:54 PM Re: 4 months into NSD and FRUSTRATED! [Re: iamhealth123]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
That's so great! I'm so glad to hear it!!

Keep it up. Joints need time to heal, so staying super strict and sticking with the bone broth should help (I took a TB of gelatin 2x day for the first few months to do help my joints recover)

When I cheat now I spring back to 0-1 very quick, within a day or so. More importantly, I can habitually eat foods that I couldnt eat at all in the first 6 months: cheese, carrots, dates, cabbage, squash, etc. I actually eat cheese every day now, but remember clearly how painful it was in the early days (like within hours I would react).

Two years later I'm not cured - I definitely can't eat anything I want, and I have to avoid high starch sources. But after so many rounds of berberine and probiotics I am in a very different place from where I started. And I don't find eating a low starch diet that hard to maintain.


Edited by Kellybells (02/16/19 05:55 PM)
_________________________
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
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