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Phil1349 #432413 02/15/11 04:44 PM
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Another thing worth mentioning, my back pain and stiffness went away when I STOPPED taking NSAIDs. I think this is another treatment that is mis-perscribed for AS initially. My thoughts are that since AS is so closely related to gut health, and NSAIDs are bad for the GI system, that NSAIDs accelerate progression of the disease. I have taken only a few NSAIDs since October (as in 1 or 2 pills) when needed after injury.

It was very difficult the first few weeks to stop taking them, but I managed with muscle relaxers and pain killers. Once you start to balance out your gut health with NSD/LSD and probiotics, the NSAIDs no longer become necessary in my opinion.


Diag - USpA/AS JUN-10 // HLA-B27+
Humira started DEC-10, every 2 weeks
Started Minocycline antibiotic therapy JAN-11
no/low starch diet started OCT-10
Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend
Phil1349 #432415 02/15/11 05:14 PM
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and here is how I discovered starches, namely potatoes, were bad news for me and how one days worth of meals changed my life:

One Sunday this summer, I ate the following meals:
breakfast :: eggs, sausage, hash browns
lunch :: cheese burger, fries
dinner :: I was craving breakfast again so I ate more eggs, sausage, and hash browns
snacks :: probably more starches

Monday morning, woke up in the worst pain in my life. I've broken bones before, and been scraped up pretty bad (road rash from falling off a bike at 45 mph) ... and this was nothing compared to it. It was a deep down pain starting in my tailbone and eminating up through my spine, in every single rib. I wanted to be done living.

From that point on I knew I need to make changes in my life. That day I continued researching AS, reading more and more about the NSD. Not sure what clicked finally, but from that day on I started eliminating foods, first was potatoes. After a week or 2 of no potatoes, I started taking away other starchy foods, and substituting fruit, vegetables, and lean meat/fish/chicken. I started feeling better. A month went by, still doing better ... 2, then 3 months ... and I feel "good"

There are other message boards for AS where people aren't so receptive to diet changes, doctors and rheumatologists tell me that diet should have no effect DESPITE my question to my rheumatologist about humira being for Chron's and AS.


Diag - USpA/AS JUN-10 // HLA-B27+
Humira started DEC-10, every 2 weeks
Started Minocycline antibiotic therapy JAN-11
no/low starch diet started OCT-10
Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend
Phil1349 #432927 02/20/11 03:50 PM
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Thanks Phil 1349 for your encouraging answer. I have started NSD and it is really difficult to get enough food when excluded starch food . I hope I will manage it.


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Great story. Thanks. In your post you mentioned that you 'did a culture on yourself and found your klebs were high'. Is that something anybody can do or do you have access to a lab?




"This is the Day the Lord has made, let us rejoice and be glad in it."
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Great story....you mentioned that you did a culture on yourself to check for kleb levels...is that something anyone can do?




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I started the NSD 12/20/10, and saw improvement from the pain within 3-4 days. I was diagnosed with pre-AS in 6/2010. By December it was affecting almost my entire body. Today, I almost feel normal again. I still take the sulfasalazine, and a couple of Ibuprofin twice a day, but there is no doubt in my mind the NSD strictly done is very beneficial. I discovered it on this sight, thanks to my daughter and wife. It has helped me regain my life again.

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So this is something that I owe to the site since a while. Started NSD in October 2008, after being diagnosed for AS in July 2008 (following some 5 years of occasional pain which I managed with pain killers). Stopped all pain-killers and refused to take any other AS-specific medication. Am mostly pain-free since then - often for months. Relaxed my diet in terms of starch intake (occasionally eat rice and buckwheat), from time to time need to avoid some non-starchy food (at the moment am careful with tomatoes, bell peppers, beer and wine). Dealing with flare-ups by drinking ginger tea, flaxseed oil, fasting if nothing else helps. Generally, am watching out for the signals my body sends me and modifying my diet if necessary. Feeling blessed to have found the site and happy that the doctor who diagnosed me was such a complete [*bleep*] that he made me resolute to find an alternative solution smile.

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I was just back for a quick visit to kickas and could not believe that I haven't posted my NSD success story here. I was reading Tim's intro post where he says that many folks come here, learn the diet, and then leave after having success, and I thought to myself, "man, that is selfish...I wish those people would share their stories...". Well, I'm one of those people!

I've had terrific success with the NSD and I owe all of you here on kickas a huge 'thank you', a big hug, a million dollars, whatever. I've got my life back and am living pretty much pain free due to this diet.

I found KickAs.org within a few weeks of getting my AS diagnosis and it was a life saver. KickAs is the greatest online community of AS suffers in the world. I immediately started experimenting with the LSD (didn't work) and transitioned into the NSD (worked after 18months of experimenting). It took me several years of experimenting before I got things really dialed in, but I'm finally familiar enough with this way of life that I'm completely off my meds and pain free. I'm hoping that by sharing my experiences with this diet that I can save you some of the pain and confusion I went through along the way. Because the truth is that this "cure" is quit simple. You just need to try it yourself.

My Story

The bad news is that I was diagnosed with ankylosing spondylitis about 5 years ago (2006) which is an (supposedly) incurable autoimmune genetic disorder. As my doctor told me at that time, "It's something you'll die with, but not from." If that's not a turd wrapped in a ribbon then I don't know what is.

After 5 years of tweaking the NSD I'm currently symptom-free 100% of the time, cured. I know "cured" is a strong word, but what do you call it when you don't have symptoms any more? I call it cured. I am here to tell you that if you have ankylosing spondylitis (or a host of other related auto-immune and inflammatory diseases) then you MAY be able to cure yourself with diet alone.

No kidding.

Like most of you, I suffered undiagnosed for about 12 years. Chronic, massive, debilitating pain from out of nowhere would strike, seemingly at random, for years. My pain would normally last for several weeks to a couple of months and then it would go away juuuust long enough for me to forget how terrible it was...and then, just when I'd slipped back into my normal life, it'd strike again.

My flares defined my life. I was literally living from flare to flare. More like I was living between flares and just hanging on during them.

During a typical flare I could look forward to the following:

* Intense mid-back, hip, and rib pain.
* "Rolling" out of bed. It would sometimes take me 10 minutes just to slowly work my way onto my side, get my arms underneath me, slowly push first one leg and then the other off of the bed, then use my arms to push myself into a sitting position- or, if the flare was especially bad I would literally flop onto the floor and use the bed to stand up.
* No sneezing. No kidding. I could go months without sneezing. Every time I would start to sneeze my body would cut it off mid-sneeze due to the intense pain in my ribs caused by the sudden chest expansion during that quick, pre-sneeze deep in-breath. I've likely got a few fusions of my ribs and it literally felt like my ribs were breaking when I'd sneeze. I once broke my collar bone and several ribs after a car accident so I know exactly what broken ribs feel like, and sneezing gave me the same feeling. I recall "waking up" on the floor a couple of times after blacking out for 2 or 3 seconds during a sneeze. Doesn't that sound fun;-) ?
* Getting stuck while dressing. That sounds weird, right? But I would constantly get stuck as I was putting on my pants. I'd have to bend down while holding on to a dresser or the bed and try to lasso my foot into my pants like a crippled cowboy. At some point during this process my hips would occasionally say "enough!" and they'd just lock up. It would almost feel like one of my hips was popping out of the socket (during my undiagnosed years I went to doctor after doctor explaining how I must have dislocated a hip while trail running years ago and that it would occasionally pop out again causing severe pain. Of course they all thought I was crazy and that the pain was just in my head. Nothing worse than being in pain and being told it's all in your head, huh?) and I'd just hang there half-pants-less, and wait for the pain to pass.
* Getting in a car didn't work. Try getting in your car while keeping your spine perfectly straight. Hard, right?
* Sleep was elusive. I didn't realize how much I got up during the night until I got married and my wife pointed out that I got up a good dozen times every night. I'd just gotten used to not really sleeping and having to get up every few minutes or hours due to the bedsore-like pain in my back caused by laying down. Pretty lame when sleeping hurts!

So you get the idea. I've gone from being in pain most of the time to being 100% pain-free without drugs or painkillers ("natural" or otherwise) and am completely convinced that my diet is the key.

My Diet

I started experimenting with diet almost immediately after getting my diagnosis. Drugs and I don't get along too well, and so the powerful NSAIDS I was taking were impacting both my mental and physical state. They were helping with the pain, but at what price?

What I Eat
Grassfed meat
Bacon
Eggs
Tons of leafy greens
Other green veggies
Nuts: macadamia, walnuts, almonds
Fish, fowl, game, shellfish
Coconut oi, olive oil

Without getting into too much detail, I basically eat a high-fat, high-protein, very, very low-carb diet. I used the free calculator at www.fitday.com to calculate my macro nutrient profile and found that I eat at least 55% to 65% of my calories every day from Fat, around 20-25% from Protein, and usually less than 10% from Carbs.

The amazing thing about such a high fat diet (aside from the fact that I don't have flares any more) is that I've lost weight. My belly fat has started to melt away. Totally worth reading the Gary Taubes book listed below if you haven't already.

Since finding kickas I have become completely obsessed with diet and ancestral nutrition. Some books I love:

The Paleo Diet, by Dr. Loren Cordain
The Paleo Solution, by Robb Wolf
The Primal Blueprint, by Mark Sisson
Why We Get Fat: And What To Do About It, by Gary Taubes
Good Calories, Bad Calories, by Gary Taubes
Protein Power, by Dr. Michael Eades
The Vegetarian Myth, by Lierre Kieth

And here is a really good recipe websites:

Foodee, go to: http://www.thefoodee.com/blog/2011/03/03/discover-something-delicious/

The Foodee website is a really cool tool that even helps you print out a shopping list.

Paleo/Primal and the NSD
I think the Paleo movement is a huge help to all of us trying to live a no starch lifestyle. There are literally thousands of websites devoted to recipes that can be tweaked just a tiny little bit in order to be NSD-compliant.

Anyway, hope this helps.

Best of luck to everyone, and thanks so much to the entire kickas community!


Get busy living! www.sickopportunity.com
Bob Connors

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I am so thankful today. I get to write my own success story.

First of all, thank you to everyone on this site who has helped me along this journey as I continue it. I, like many here, was lost and looking for help when I stumbled upon my fellow AS-kickers. Thank you to all of you who give your time and energy to help others. May God bless you. We need each other. AND, a big thank you to Professor Ebringer and his team.

For me it started with shoulder pain in June of 2007. I was 45 years old and pretty active. My first thought was that I had pain from my golf swing. It's not a pretty sight. My primary care Dr. Richard Ellis of Kaiser Permanente prescribed Motrin and rest. Over the next few weeks, the pain intensifed so that it was difficult to sleep. Then, it progressed to the point that I had a hard time combing my hair and putting on a shirt. Pain and stiffness in my neck was next. I noticed the pain subsided after taking a warm shower and getting on with the day. Over the next 4 months I continued taking Motrin 800mg 3 times a day, received a cortisone shot in both shoulders, was getting prepared for shoulder surgery, started taking predisone and was in quite a bit of pain. Fortunately, Dr. Richard Ellis has a suspicion about my symptoms and gave me a blood test that showed I was positive for the HLA-B27 marker. Next, he sent me to the Rheumotologist.

When I was told I have Ankylosing Spondilytis I was disappointed. I was prescribed more predisone, methotrexate and more Motrin 800mg. I started doing my own research and found www.kickas.org and Professor Ebringer's research.

I read up on the website and did some changes in my diet but not enough to get results. At the same time I started giving myself Enbrel injections which took away all the pain. I was using Enbrel once a week, as prescribed, until I eventually only needed it once a month and my Rheumatologist was fine with this.

During this time I continued to research the No Starch Diet/Low Starch Diet other diets; "The Maker's Diet", "The Hallelujah Diet", "Atkins Diet", the "No Night Shade Vegetables Diet" and also had some first hand experience from an acquaintance who had severe A.S. in his twenties than found life-long relief through diet based on Fruits, Vegetables, Nuts, and Whole Wheat foods, which for him was based on the Seventh Day Adventist Bible based diet which is a vegetarian diet.

We are like walking laboratories. We research and then we experiment to find out what works for us. Thankfully we have enough similarities that we can find common ground and encourage one another with hope and ideas. I am currently reading Carol Sinclair's "The IBS Low-Starch Diet" book and finding much comfort in knowing that others have the same ups and downs that I do. I think I read a quote here at Kickas.org, from John "Dragonslayer", who responded to one of my questions early on, and said "your pain will train you." How true that is. I have carried that with me. I finally got sick of injecting myself with Enbrel and its potential side-effects and decided to follow the research and advice and change my diet. With Enbrel, and other biologics, it's a love/hate relationship. I'm thankful for the pain relief but I don't want to risk the side-effects.

It has been over 100 days since I used Enbrel and I am feeling great! Wow! That felt good to write. I am cautiously optimistic. I am an ASKicker!!! I am not going to let this thing beat me. I have eliminated potatoes as they cause the most problems for me. I have been able to get by on a Low Starch Diet. I am eating those good fruits I used to avoid. I am eating tasty green vegetables I used to not like. I enjoy eating all the best meats. I can eat whole wheat bread (I make it at home), brown rice (on occasion) and whole wheat pasta (also, limited). If I have a flare up, I change what I am eating. I feel it in my hands and shoulders at night if I have made some poor choices with my food. I exercise 3-4 times a week and that seems to help as well.

Thanks again. The journey continues for all of us. One day at a time is actually a good way to live.

Last edited by Jorgensen; 04/10/11 03:15 AM.



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I've tried the no starch diet and got maybe 5-10 percent reduction in pain/stiffness. I really want way more than that. I decided to try that edgar cayce apple fast for 3 days. I didn't feel any better. I had to take some tramadol during the fast because I had terrbile head pain...and almost threw up on the last day after I took the half a cup of olive oil. What am I doing wrong here? I thought the apple fast would give me a good starting point. I really want this diet stuff to work but I feel like I'm chasing my tail. Should I try the elimination diet where I eat only fruits vegetables and meat (no dairy, no starch, no sugar) but then I wonder why didn't the apple fast work...is it because there's too much sugar in the apples and I was reacting to that? Anybody got any feedback?

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