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#518875 - 07/27/18 04:09 PM After a year(or more) on NSD
kj243 Offline
Member

Registered: 04/24/16
Posts: 27
I'll preface this by saying: My pain was on 1-10, never more than a 4 or 5 at most, it generally hangs around a 1-3, or is just generally tense at times. To me this is still unacceptable and I don't want to live my life like that, which is why I'm aiming to continue improving things.

I've been on this diet for a year: Only cooked turkey with romaine lettuce and spinach. Some vitamin D on the side that is sugarless and starchless. I've been getting inflammatory markers and vitamin/blood levels and stuff checked at my doctors office to keep tabs on things on this very restrictive diet.

My symptoms may have improved but it's still sort of hanging around at this 1-3ish, 2-3ish level every now and then. I still have some symptoms of leaky gut as well like acne and weird unexplained itching at times, etc.

*I did try blanched almonds a week ago, and they seemed to slightly increase my pain/inflammation somewhat, which I didn't understand. It may have been from the large amount of fiber though, I was having a large amount a day cause I got too hungry. I ended up having a terrible stomach ache one night and decided to stop them though, if I do try them again I'll probably eat way less of them per day, maybe 2/3s a cup a day or something.

Clearly, no starch seems to not be all that I need to do to improve my symptoms, so my question to you guys is, what would you suggest doing now?

I was thinking about probiotics, what would you suggest?
I was considering trying digestive enzymes again.
Is there anything else I should consider doing for the leaky gut/good bacteria/etc aspect of this? I wanted to try a strict NSD for a year and see what happened. It may have improved a little but not much has happened as far as I can see, really. I'm just really tired of turkey at this point.

Or does this process just end up taking really long for some people? I'm really curious just. After being on an extremely restrictive diet for so long, what should I try now.

It's been a while since I've made a topic, and I appreciate any responses in advance. Thanks for reading.

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#518876 - 07/28/18 02:45 AM Re: After a year(or more) on NSD [Re: kj243]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6052
Loc: Reno or SFLU Philippines
Hello, kj243:

I'm sorry You have not experienced more relief from diet alone; so many of us also require key herbs and supplementation.

Before anything else, I strongly recommend borage seed oil at least 6-1000mg capsules upon retiring for the night. During the day at least 8X teaspoonful EVOliveOil especially before each meal.

I was thinking about probiotics, what would you suggest?

I do not recommend probiotics because they usually have starchy substrates.

I was considering trying digestive enzymes again.

Again, the substrates used are too often starchy.

Is there anything else I should consider doing for the leaky gut/good bacteria/etc aspect of this?

Bone broth or the product "SBI Protect" powder that helps heal LGS, glutamine, butyric acid capsules. Stonyfield Farms or Brown Cow yoghurt at 2oz or less between lunch and dinner for the probiotics and other gut-repairing elements.

Foods: Okra, whole eggs, salmon, lychee fruit (canned in Asian markets), and bitter melon all help the gut.

Supplements: Zinc, copper, iron, vitC, lysine, vitE, niacinamide and Bcomplex, glutamine, calcium and magnesium.

I wanted to try a strict NSD for a year and see what happened. It may have improved a little but not much has happened as far as I can see, really. I'm just really tired of turkey at this point.

Please consider fasting 4-5 days to help eliminate all residual inflammation or do Edgar Cayce 3 Day Apple Diet, once these are in season (September in N. Hemisphere).

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#518888 - 07/29/18 09:33 PM Re: After a year(or more) on NSD [Re: DragonSlayer]
kj243 Offline
Member

Registered: 04/24/16
Posts: 27
Thanks so much for your reply, your advice has helped me out before.

I'll be keeping this in mind and adding in stuff as I can.

I ordered SBI protect powder, do you have any experience with it, or know anything about it? We researched it a moderate amount and it seems like something interesting that I haven't tried yet.

Is okra starchy? Cooked okra or raw?

Does the yogurt contain lactose? I've had issues with even the simplest sugars before, but I was eating them with foods that affected/slowed their breaking down I guess? I'll have to see what I can do.

Again, thanks for the ideas

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#518890 - 07/30/18 03:33 PM Re: After a year(or more) on NSD [Re: kj243]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 131
Loc: Toronto, ON
I found relief with the diet but didn't really achieve success still I started rotating probiotics with herbal antibiotics. It really brought my pain down to 0 most days and it only gets bad when I get carried away with eating starch. I also can eat more low starch foods (e.g. carrots, cabbage, figs) than I could when I started. You can read about what I did here. (
Dragonslayer also has a protocol using prescription antibiotics posted somewhere on this site...I haven't tried it because I have no way to get the rx)

I take probiotics daily, have not had a worsening of symptoms, though I do seem to react to some that contain certain as-yet unidentified strains of lactobacillus (causes rosacea and constipation). I really believe they have helped shift the balance. Another forum member posted about phage therapy, which I find intriguing. I think I will add that in next time I do a round of herbal antibiotics.

I definitely struggle with nuts. Although most are low in starch, they are not easy to digest, which I suspect is the problem: the starch, though small, doesn't get broken down until it's well down the GI tract, meaning it's still reaching the problematic bacteria. I generally avoid them but it stands to reason that some type of processing to break them down first (e.g. nut milk, almond flour, almond butter etc.) could make them less problematic. (I haven't really tested this theory out though I do not seem to react to the homemade hazelnut milk in my coffee. But my partner, who reacts horribly to just a small handful of whole chickpeas nevertheless does fine with hummus and ok with chickpea flour).


I haven't tried digestive enzymes, but if they help break down food faster, sooner, then I can see how they might help. If you try, please post your results. I'm very curious to learn whether they make a difference.

Okra was a staple of mine in the early days of NSD! I hadn't eaten it much before but was desperate to eat more variety, and had no issues. Also added in globe artichokes. Yum!
_________________________
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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#518893 - 07/30/18 11:57 PM Re: After a year(or more) on NSD [Re: kj243]
MLR Offline
New_Member

Registered: 07/07/18
Posts: 18
Loc: Eastern Washington, USA
I'm curious about how long it takes to improve symptoms. My son is the one with AS and is on the NSD but he has been trying to add foods and has had a few flare ups. He's been on NSD for about 5 weeks. The biggest problem for him is boredom with food since all he is able to eat is meat and salad. I'm curious if anyone can have Kefir? I've read good things about the probiotics in kefir. And can most AS sufferers have eggs? Should he wait longer to start adding foods?

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#518894 - 07/31/18 05:15 AM Re: After a year(or more) on NSD [Re: kj243]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 292
I am sorry MLR but I am not a believer in any sort of diet as a treatment for A.S. I thought I would point it out to you that not everyone on this Forum believes in such things.

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#518898 - 07/31/18 02:07 PM Re: After a year(or more) on NSD [Re: Frederick]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 275
Loc: Central Canada
Frederick, perhaps you mean, "NSD or any diet does not have an effect on my condition but others benefit from NSD."

For you to say that you do not "believe" is like a blind man saying "I don't have faith in others that tell me that there is a moon because I can not see it."

For people that get relief from NSD there are multiple scientific reasons that have very little to do with faith/belief.

Perhaps just as autism is a spectrum so is AS and you are in the deep end. Furthermore I suspect that there are many people in this forum that have AS-like symptoms but are hard pressed to have bone destruction and the formation of the bamboo spine mainly because their cycle of damage and healing is better functioning since the environmental factors that got into their body is having less of an effect on the repair mechanism.

What is common between everyone here is underlying inflammation in the connective tissues but the triggers are probably more numerous than the number of people here. Many on this forum probably do not have true AS and perhaps those are the people that get great relief from NDS/LSD.

Furthermore, even if someone has radiological evidence of AS it possibly is misinterpreted.

Just my hypothesis.

Robin
_________________________
HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Scratched by a sick cat
2013.08:Reverse blockage in a SCUBA accident
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

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#518899 - 07/31/18 03:36 PM Re: After a year(or more) on NSD [Re: kj243]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 275
Loc: Central Canada
Hello jk243:

Also try adding:
  1. Something like berberine HCL to increase stomach acid.
  2. Use herbals/oils (such as black cumin seed oil, oregano oil, etc) to reduce infection in gut tissue that will cause leaky gut.
  3. Do use probiotics and don't stick with one brand; try to get in a variety of strains.
  4. Enzymes can help.
  5. And as Dragonslayer says, keep throwing in healthy fats to promote gut healing.

How is your thyroid and other hormones balanced?

If you are not on any immune-suppression medications then also get the status of your immune system activity: c3a, c4a (complement), cd57, WBC, RBC, etc and get an expert to determine if your your immune system is being suppressed. If it is then take herbals to boost it and try to find what is the cause of the immune suppression: mould/candida, heavy metals, stealth infections and parasites.

For me NSD slowly lost its effect over the past three years in both ways -- avoiding starch no longer reduced symptoms to zero but also eating starch no longer triggers unbearable flares. Since I have recently tested positive for Lyme disease and coinfections, and can feel how it has spread through my body, those diminished effects are explainable by how the stealth infections are now dominating and suppressing my immune system -- my immune system can no longer launch a painful attacks on myself.

Which makes me imagine that what some AS and "autoimmune" people may be lacking are parasites/infections that help modulate their immune system. Maybe we now overreact to the activity of good bacteria because we have lost the immune suppressive activity of the bad bacteria (and gut barrier function)?? Perhaps the bad infection idea is backwards. So the greatest sufferers may need to eat more dirt to replenish a loss of parasitic microboita. Genova Labs shows that my microboita is low in diversity. However I suspect this overreaction to good biota, loss of diversity and over active immune system is just a consequence of having chronic intracellular gut and systemic infections -- I have some of the right bugs but they are in the wrong proportions and in the wrong places.

Agrochemicals have thrown the soil microbes out of balance and destroyed diversity. That diversity and balance is reflected in our bodies. Some of us are more sensitive to the changes than others. That is just a tangential thought. The balance of symbiotic and parasitic entities in nature and us is very philosophically yin-yang -- we need both.

@Kellybells: This sounds a lot like me!!! -- ".. 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)."

The chronic, morning finger stiffness is only about a month old for me but gave me hints in Janurary. The plantar fasciitis first appeared around April 2017. Since January 2018 stinging, burning and itching all over my body has been spreading and becoming more constant. Sugar/starch makes it worse! It only occurred to me around February this year that I could have Lyme but could not comprehend how it only began developing in the past five years when I have not been in wood tick land for over fifteen years. But then I realized that, just a few weeks prior to developing the first symptoms of barotonella, I played rough with a sick cat (it had ear mites and was being treated). The initial symptoms after the cat scratch (and SCUBA accident) were tingling/tightness in the temples, then an unusual sore throat followed by growing head pressure that peaked as some kind of week-long meningitis then turned into pain and inflammation in the base of the skull, etc.) Finally five years after that, I had blood work done for Lyme and coninfections and have many positives along with a suppressed immune system. I doubt that this is only an autoimmune disease. It feels like an infection that moves about my body.

It maybe that my diagnosis of fibromyalgia at age 25 was really a misdiagnosis of Lyme disease and then 20 years later I caught bartonella from a cat which has removed my body's ability to put old infections into dormancy.

Antibiotics and herbals to the rescue! Along with intense exercise, cold showers, lots of comedy, singing and anything else that can boost my immune system.

Just my two nickels.
Robin
_________________________
HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Scratched by a sick cat
2013.08:Reverse blockage in a SCUBA accident
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

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#518900 - 07/31/18 07:08 PM Re: After a year(or more) on NSD [Re: kj243]
kj243 Offline
Member

Registered: 04/24/16
Posts: 27
Thanks for the responses guys.

MLR: Eggs seem to affect people differently. I stopped them just to be sure I didn't leave any food related questions unturned and was strict on my no starch diet to be sure I tried it. Some people swear by eggs though, but I suspect that for me personally they might increase inflammation a little. I am unsure at the moment.

Kellybells: I forgot about the probiotic/herbal switch off thing you were talking about, I remember reading about this a while ago. I'll probably try that since clearly I need to look into that route. Thanks for reminding me.

Robin: Thanks for your suggestions, I was on Humira for a while a few years ago but stopped it. It mildly helped my AS some, but I had some nerve-related symptoms sort of come up, and stopped the humira after getting cleared by a neuro doc just to be safe. The symptoms have since cleared up. Where do you go to get your immune system checked out, or some of the various things you suggested? Just a normal doc does these tests or what are we talking.

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#518904 - 08/01/18 05:32 AM Re: After a year(or more) on NSD [Re: Robin_H]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 292
Originally Posted By Robin_H
Frederick, perhaps you mean, "NSD or any diet does not have an effect on my condition but others benefit from NSD.

Robin


Yes well corrected Robin only I would add that many others do not benefit from NSD

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