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Joined: Sep 2016
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Hi forum!

First post, glad to have joined wink

Long story short: I was finally diagnosed with AS for about a year ago after 15 years of unidentified back pain.
I then started experimenting with different diets. Mostly I've been doing anti-inflammatory diets, but have now switched to NSD and a healthy gut diet after doing some proper research (like finding this page, thanks).

So - today I made a deal with my doctor to do a blood test every second or third week. I have really been missing some scientific data to track my progress and verify my diets upon more than simply how I feel, so this gets me super excited! laugh

I've read success stories with people overcoming AS who recommend a blood test for tracking inflammation called ESR.

Do any of you have experience with or knowledge on this?

I would like to know exactly what to tell my doctor to look for.

Inflammation?
Klebsiella anti-bodies?
Anything else?

Best,
Sylvester


HLAB27+, DX AS 2015, first flare 2001
Fused SI joints, degenerated discs in lower back
Daily exercise: Iyengar yoga, ashtanga mysore
NSD and supplements, no meds
Joined: Jan 2010
Posts: 2,105
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ESR is one of the inflammatory markers, as is CRP, so if you are one of the people who show changes to either of these with changes in inflammation levels, then you can track what is happening with regular blood tests. However, not everyone shows changes in either of these, so unless you knew that you had had raised ESR or CRP in the past at a time when your inflammation was bad, it likely wouldn't be much use to keep testing them. They are also very non-specific markers, so they could be raised for something completely unrelated. If I was tracking my own inflammation, the only thing I have noticed that consistently raised when I am flaring and decreases when my disease is under control, is actually cholesterol levels - but having said that, I don't really think they are a reliable inflammation marker either.

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WELCOME, Sylvester:


Regret the IgA-Kp test has not yet been commercialized. If You are an "indicator" (some almost 60% of us have ESR that tracks disease activity), then ESR is a great test but if not, the test is useless. CRP might be better if ESR does not work, but most people who do not have elevated ESR also do not have any indication through CRP test.

When I am in Philippines, I can get my ESR tested upon demand and I found that when it was >26 I had pain. Fasting and antibiotics along with strictest NSD took this down to 19 and lower very quickly, like within ten days or so, but eating a little starch could then increase this rapidly.

Long-term, look for X-ray and ROM changes; be very methodical about this and try getting near-identical images each time. Also, monitor height and do DEXA scan or bone density. Remember that AS is a bone-wasting disease (NOT bone-building) and each of us is subject to osteoporosis/osteopenia, so it is very important to supplement aggressively with starch-free minerals and vitamins.

HEALTH,
John

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Thanks guys! I'll keep you posted as my results are in next week.

By the way - do you know of a way to test for Leaky Gut / IBS?

I just got hold of my last blood test from back in July. It does not include ESR or IgA-Kp, but it shows my CRP level as normal.
I did have high levels of Leukocytes, B-monocytes and B-eosinophilocytes though. These all seem to be white blood cells related to immune response during infection. At the time I was eating an anti-inflammatory diet with (unfortunately) quite a lot of starch. I did not have massive flares, but I felt something was lurking under the surface.

Any experience with these?

Best,
Sylvester


HLAB27+, DX AS 2015, first flare 2001
Fused SI joints, degenerated discs in lower back
Daily exercise: Iyengar yoga, ashtanga mysore
NSD and supplements, no meds

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