Kickas.org Forums Ankylosing Spondylitis General Discussion Helpful Tips Drugs are not a long term solution

That's an important factor, no doubt. In order to be healthy, one must cultivate thoughts of health in their own mind. A doctor, practitioner or clinician can only make suggestions or offer information, it's up to everyone as an individual to educate and empower themselves. It's sad to see so many unwilling to put the time and effort into ameliorating their health. I've recently gotten back into backcountry snowboarding and touring, a passion of mine that I thought I would never be able to do again. It's been a blessing and a really interesting journey. The mind is incredibly resilient, however there must be some motivational factor that pushes us everyday to improve. Being able to get outside and participate in activities that i'm passionate about has been highly motivational for myself. So many factors contribute to disease, genetics play a role of course, however, more importantly, I think our environment, quality of thoughts and nutritional choices are far more impactful.

Jesse your posts hit home with me. Thank you for your posts it has helped me confirm my belief in what I'm striving for.
I'm a new member and new to AS. I was diagnosed with AS about 5 months ago at the ripe age of 56. I was in denial for the first two months of my diagnosis. The reason why, I had an injury to my left side of my sacrum racing my dirt bike which I though was causing all of my pain in the hip, buttocks and eventually my lower back.
Well I was not recovering from my injury as I had in the past. My primary doctor knew something else was wrong. So I had blood tests, X-rays, MRIs done. The blood tests came back and I tested positive for HLA-B27 gene. Plus my tests for inflammation (CRP,ESR) were very very high. My primary doctor sent me to a Rheumatologist. She confirm the AS through the blood tests and MRI images. She prescribed standard treatment drugs, in my case Prednisone, Naproxen. I also took hyrocodone for pain when the Presdnisone and Naproxen didn't relieve the pain.There were days I could barely get out of bed. Sleep was not good to say the least.
My wife did most of the research on AS and found about the no starch diet and leaky gut triggering the AS. I never had continuous pain for this long anywhere in my body. I have had few surgeries in my day from sports injuries. I really didn't believe in the NSD at first but I went for it. The first couple of weeks no change. I was still on my prescription drugs. Without the drugs I could not function without a lot pain. I didn't cheat not once on the NSD. I made an appointment with my rheumatologist to discuss leaky gut theory and NSD. She brushed it off as no scientific proof that it works. I stuck with the NSD and took supplements to help my gut to heal. In about 6 weeks of the NSD I notice the change in my pain plus I lost about 20 pounds. I started changing my attitude, started thinking positive about this theory of leaky gut and NSD. I started reducing my use of my drugs. I found this website and started to read all the posts I could about how to put AS into remission.
As you said in your post that rang true to me was once my outlook and/or attitude changed toward this theory everything started changing fast. I'm totally off my drugs I just had my blood test done again. The test results were awesome, almost back to normal. The pain is almost non-existent. This NSD is working for me. I have changed the way I eat now. My wife really helps out. I eat no process foods now. I have not eaten at a restaurant for at least two months now. I started to exercise again now the pain is gone. I'm building strength back without fat weight gain. I'm back doing the things I use to do, riding my dirt bike, snowboarding, surfing and hiking. Of course not at the same level yet but it's a vast improvement from 5 months ago.
Your posts about taking the responsibility for yourself and empowering yourself to do research for what work for you really helps me to strive to maintain my new outlook on AS. My whole outlook has changed so have my actions and its for the better. Thanks again for sharing your experiences.

Havsurf; I am so glad it has helped and you persevered.

You have hit the nail on the head...the physicians do not or cannot recommend (for 'legal' reasons) any specific diet because there is no proper research to back it up. My husband's UK NHS consultant is the same. He is happy that my husband is not getting worse and has improved.

If they recommended diet without the evidence then in their eyes, that would make them irresponsible. Even though I bet there is a shed load of anecdotal evidence from their patients who have made changes.

The fact that mainsteam physicians do not recommend diet means a lot of people do not have to take responsibility for themselves, either because they do not know about it or they might know something, but are comforted that their doctors must know best and changing diet can be very hard unless you have a very good reason to do so.

Another barrier why switching is hard is in a family situation where the wife takes care of cooking because the husband works hard, she has to buy into it too and support him.

Not to mention the amount of extra money you have to spend on healthy food ... A conservative estimate would be that our food bill is at least double what it could be and then there are the nutional supplements he has.

But of course to enjoy good health is priceless. I would encourage anybody with AS to try and persevere with diet. The road is not always easy, but this forum is so helpful for people that have problems along the way.

That's great to hear Havsurf, a perfect example of how quickly things can change for the better simply by setting healthy goals and making positive life changes.

Bel: Your post is so true in my case. My Rheumatologist gave me literature on AS and it was generic type information. Which I can find anywhere. Also I did not accept the idea I had to be on drugs the rest of my life to survive. That gave me motivation to look for alternatives to standard prescription medicines. I have not seen my Rheumatologist since my blood tests results can back recently. I'm in the process of getting an appointment to talk to her about my success with diet and healing my gut. I want to here her opinion on my case.

You are correct about the cost of the food. But I live in California and there are a lot of health food stores and farmer's markets here. The demand is good so it brings a lot variety and supply which makes the pricing competitive. Just shop around a bit to get better pricing.

My wife was already eating somewhat healthy. I was not. So my transition to eating healthy was easy once I changed my mindset. My wife had no issue with NSD since she was almost doing it already. She is more on a low starch diet. So it works good for us.

As Jesse and you suggest once you commit 100% it make the transition easier. It really worked for me.
Once again thanks for the information it was very helpful.

While finding out what I was sensitive / allergic to and stopping eating those things. IgA/IgG testing showed off the charts sensitivity to casein protein, and egg protein a little. Stopping dairy completely helped with the gastritis but still this wasn't enough. Possibly because my leaky gut will take a long time to heal.

Thus I needed more.

Humira has been a wonder drug for me.

I would like long term healing and so am trying to do what I can on that front.

But too, quality of life is essential to me too.

Thus so so thankful for humira.

And sometimes humira isn't enough and my rheumy encouraged me to take aleve now and then to get over the rough spots and so that is what i do. If it is hurting my gut, then I guess its short term vs long term that I am balancing. Currently I tend to take an aleve once or twice a month. half of the time its not for SI or neck inflammation but rather migraines. Nothing else really touches my migraines and so even though i use food, caffeine, lavender, and avoidance of light and sound, sometimes I have to take an Aleve so my head doesn't feel like it will explode.

I think sometimes we just gotta balance things and attack on multiple fronts: drugs, diet, supplements, herbs/spices, ice, ultrasound, exercise, etc etc.

Jesse, great post! I echo your thoughts and just want to add that anyone not finding relief from nsd might need to look at further factors. I noticed some improvement early on from NSD but it took moving out my house with a mold problem to feel like I returned to the land of the living. After 2 negative parasite tests (doctors data and a pcr one from a gi doc) I found out that I Do in fact have parasites and I'm currently working on that problem hoping for even more improvement.
Also docs in the US are legally not allowed to recommend anything that's not fda approved and a diet/lifestyle isn't fda approvable. I have not seen a rheumatologist since I was dxd. I asked him about NSD and he said basically, I'm a doc so I write Rxs so your on your own with diet but go for it if you want to. So doctors can't guide you through this and most nutritionists don't have experience with NSD. It really does come down to being your own guide and biggest supporter.
And one final thought, I just spent some time at the beach in Central America and every time I went swimming every trace of stiffness seemed to disappear. I think if you have leaky gut you're probably demineralized and the salt water exposure on your skin might be like a giant epsom salt soak getting some much needed minerals into your body. Also vit D is almost always low with autoimmunity so the sunlight exposure was beneficial as well. So don't underestimate the benefits going outside or swimming in clean salt water if you can.

Miniowl, I agree and really great point. Parasites are so common nowadays and can lead to a host of health problems. In fact, candida overgrowth and parasites can often be linked, due to low immunity. Cleansing the liver and gallbladder with coffee enemas or a gallbladder flush can help clear the detoxification pathways and help flush parasites from the colon. Demineralization is also a huge factor, low nutrients absorption in autoimmune patients can lead to a host of nutrient deficiencies. In my opinion, the key is to remove toxic foods from the diet, support our system with good healthy and nutrient dense foods, use anti- parasitic and antifungal herbs to remove unwanted pathogens, and clear detoxification pathways.

PS: Check this out! https://www.youtube.com/watch?v=Ljcf8kNleXU

A year ago I could barely walk a block without needing to take a rest! 1 hip surgery, 1 years worth of lifestyle changes and building my strength back up and I'm feeling 110% back on my board enjoying the backcountry! The body is amazingly resilient and adaptive.

That is AMAZING! I am so happy for you and thank you for sharing and showing that healing is possible!

Cheers! Life is beautiful and as far as we know we only get one! Have to make the most of it.