Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Frustrating relapse - any advice?

Hello, Robin_H:

About 40% of AS patients do not have elevated ESR/CRP tracking disease activity. However, in the majority of cases, these are useful to determine disease activity. When I first started NSD, I was able to check my ESR on demand (I was in Philippines and laboratory close), and could absolutely demonstrate the effect of dietary starch on this--long before my actual perception of pain increase, which did not happen as I got much more strict.

In his "Etiopahtogenesis" paper, published in the AS and RA Papers section, Ebringer tracked 36 patients' ESR for a 9 month period. The instructions to the patients were to just try and reduce eating all the obvious starches as much as they were comfortable with and try eating more meats and leafy vegetables. There was one unchanged, but one of the two wrong-way results was later revealed by his son (also a patient): "Dad eats a potato every dinner; says 'it is not really a meal without it.'"

HEALTH,
John

Thanks for the insight DragonSlayer.

One of the reasons I remain undiagnosed is that my CRP and ESR levels were normal when finally tested last December. This was before I started NSD but I had already been eating a grain and dairy free diet for many years. While not completely starch-free, I was eating substantially less starch than the average person. While I still had a fair amount of pain, I suspect my diet limited my inflammation and was the reason my ESR/CRP were normal.

I have seen other posters note that after subduing their AS with NSD that their ESR/CRP levels don't necessarily elevate when they experience a flare, so pain level doesn't seem to correlate directly with ESR/CRP. I have begun to wonder if those tests are sensitive enough for the lower levels of disease activity that come with NSD. And whether they are most useful for longer term, full blown active disease among full-starch eaters. What is your sense of this?

On a personal note, the blind reliance on these tests for diagnosis has been frustrating for me. I was experiencing daily, persistent pain when I was tested, and my symptoms were real. However, all was dismissed when my test results came back negative. My PCP even suggested I might try eating full starch to see if my CRP/ESR would be affected, in order to support a diagnosis. Obviously I refused.

Spondylitis pain started in the thoracic are when I was in my early 20s. I think my GP was on the ball but I didn't know what he was looking for. He did ESR at that time and all was well. I was getting rare IBS symptoms then too. Doc concluded I had fibromyalgia.

I have always been a big vegetable and meat eater out of instinct due to the discomfort I felt by age 35 when I ate starchy foods. I had no idea why I felt bad.

All those years I believed the fatigue and discomfort was FM.

Over 20 years later (age 47) pain and inflammation finally got to the neck and lower spine. CRP and ESR were still fine but before those tests I was already on a LSD .

I too have wondered if I went off the LSD/NSD for a few weeks and then saw the rheumatologist what the CRP/ESR would be like but I am too afraid because when the inflammation goes up the damage accumulates and doesn't seem to heal.

Right now I am doing the three day apple fast but I feel horrible: lower back is fine but the neck and head is a different story.

That's a question I want to post, "anyone have chronic inflammation in the mucous membranes of the head, tightness and pain in the temples, pain behind the eyes, and a lot of pain, crunching and inflammation at the base of the skull?" I developed those head symptoms after a scuba accident in 2013 in which I got sea water in my head and then the full blooming of AS symptoms developed over a period of two years with the help of heavy NSAID use futilely attempting to kill the skull. pain.

I'm ending the fast with a pot of beef bone broth soup!

Hi Robin,

I have neck issues and frequent headaches but not quite like yours. But other aspects of your story really resonate.

I had persistent SI joint pain from age 18 but just muddled through with NSAIDs and occasional visits to the chiropractor. And like you, I gravitated to low starch eating without fully realizing the significance.

That might have been that except a year and a half ago, I also suffered an injury: badly bruised my right hand in a cycling accident. A few months later I developed crippling joint pain in the fingers of both hands, which is what eventually led me to a rheumatologist and then here. Rheumatologist was useless but NSD has changed everything.

I think the injury was the trigger. Leads me to wonder if there is something about the body's response to injury that can trigger AS in different sites, especiallly in sites beyond the typical SI joints, heels, and eyes.

I too wonder what kind of injuries and other things can trigger AS. I feel a large, well designed database would be needed for researchers and doctors, assisted with AI, to tease out such effects.

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=newreply&Board=7&Number=517109

These days my body overreacts to injury and just adds insult to injury -- the inflammation process is our of control

Keep on trucking!
Kevin

I wanted to check back in. Oh boy.. I had a great run of 2-3 weeks with basically a 0-1 pain level. I went off the wagon again, this time drinking bourbon over the course of 2-3 days straight. I am back in the midst of a nasty flare, where I am going to go ahead and fast again to try to relieve the pain.

We talk so much about diet. A random variable that we may not be paying attention to at all is daily, heart pounding, blood circulating EXERCISE! Diet, exercise, good laughs, rest and no worries is almost everything. Missing one of those and life is a bigger challenge.

Hey everyone. I am happy to report that I am doing GREAT since 6/15. I have cut out all dairy, starch, and alcohol, started exercising 3x/wk, and I can honestly say that I have never felt better. This includes the time predating my AS symptoms.

If I cheat a tad bit, I still feel some of the ache wanting to come back, so I certainly do not believe I have beaten it.

That's great to hear exacta. Way to stay on it. I find that nothing inspires sticking with it like success.

I also find that small strays set me off. Hope the day comes when we can tolerate more foods. In the meantime, having a med-free way to manage all this is pretty amazing.

Hey KickASers - I wanted to provide an update.

I have had my share of ups and downs since July. I am in a good place right now, where I feel like I have continually increased my knowledge of what drives my inflammation.

Here are some of the borderline food/drink that do not seem to affect me:
Red meat, pecans, most dried fruit, honey, eggs

And those that do:
Alcohol of any kind, figs

I'm also on LDN, which I am fairly certain is helping. I am currently at zero pain, but very sensitive to any starch, alcohol, or excessive sugars.