For those of you who have found tremendous relief on the NSD, or for those who have either plateaued on the NSD or are not reaping the benefits you had hoped, I thought I'd share my experiences on what I refer to as a natural extension to the NSD. I learned about this protocol from other KA posts in the NSD forum.
http://www.healingnaturallybybee.com/The main gist seems to be something called the Optimal Nutrition diet. There's a lot of controversy with the claims of the diet, so definitely take everything with a grain of salt. It's interesting that there is a huge overlap between NSD and the dietary protocol outlined in this site. Additionally, it seems as if most of the activity on the site is related to candidiasis (which is controversial in its own right), but there are claims that following this dietary protocol could help address other rheumatological diseases. If you search in Bee's forum, some people have claimed to manage their fibro and RA through these dietary changes. There are some pretty 'interesting' success stories - stories about people overcoming numerous health issues by switching to this protocol. It's impossible to determine what is genuine fact and not. Those warnings/caveats aside, I do feel that I benefited tremendously from this particular approach and would not dissuade anyone from pursuing it.
Why did I choose this protocol?I don't like being a guinea pig whenever possible so I ended up choosing a path that other AS-kickers have. I believe Jeanne posted this info on her blog, so I felt there was at least one data point from a 'nearest neighbor' perspective (someone with AS and candidiasis). Plus, compared to numerous other paths, this approach was fairly conservative.
What about my situation do I consider unique and how might that explain my results?At my worst, I could no longer take care of myself and had to move back in with my parents. So from that standpoint, my spondy was pretty severe. However, my x-rays and MRIs were clean and my inflammation markers were elevated but not 'off the charts'. So, while I suffered from various soft tissue related problems for 13+ years, my 'hallmark' AS symptoms (e.g. unrelenting back spasms, SI joint pain, etc.) only recently hit me; so from a collateral damage standpoint, my case isn't as severe as others. I feel that is important - since there was less structural damage, I was able to reap the benefits sooner. For those of you who are Undiff SpA, it'll be interesting to hear if you benefit from dietary/lifestyle changes quickly as well.
Currently, I am completely asymptomatic and with the exception of leading this inconvenient life style, pretty much have a normal life again. Additionally, I did not rely on NSAIDs early on to deal with the inflammation, and if you believe the leaky gut theorists, I believe some of my relatively quick progress could also be attributed to that. Lastly, I think acupuncture in conjunction with these lifestyle changes helped me tremendously.
Another interesting fact is that numerous health ailments disappeared. For the first time in years, I didn't have any sinus infections. For the first time since the mid-90s, my eczema went away. For the first time in a while, I didn't get any allergy attacks. I didn't get sick this year; which is pretty impressive given the severity of the cold season. I have always struggled with gingivitis, but now, my gums are incredibly healthy. My body responds to physical activity again. My digestion is better. I had this suspicious/scary looking skin mole fall off (totally weird, but others have experienced something similar too). I no longer wake up in the middle of the night to go to the bathroom. Many of these things are relatively innocuous compared to spondy, and we attribute them to the process of growing old. However, I now have a belief (right or wrong) that these various ailments are a lot more interrelated than conventional wisdom tells us.
Could I be wrong on the impact of this healing naturally protocol?Absolutely. It's impossible to run a perfectly controlled experiment, so there is always the danger of confusing correlation with causation. It is possible that I could be the beneficiary of an amazing placebo effect. That being said, if I didn't believe that this protocol helped me, I wouldn't be posting my experience on it. I truly believe that these lifestyle differences have allowed me to effectively manage my spondy. Considering where I was the beginning of last year, I'll take it.
What do I like about the protocol/website?More is not better – This is a pretty common theme with the website. I think there's some sage wisdom associated with not overdoing anything. The site asserts that natural healing is a slow and gradual process, so there's really no way to accelerate the healing process. It's tough not to have instant gratification, but I feel that investing in a healthy lifestyle was the best long term decisions I made.
The supplements they recommend are safe – For the most part, nothing that they recommend is 'completely out there'. My supplements are pretty straightforward – Vit C, Calcium, Magnesium, Vit B Complex, Cod Liver Oil, probiotic. That's it. I don't feel I'm taking any unacceptable risk by adhering to this simple set of recommended supplements (in there recommended dosages, of course).
This may explain some of the variance in why some people respond well to NSD and some do not – Some people have long suspected that they have to remove sugar from their diet in order to reap the benefits of NSD. If the pundits who believe that sugar can suppress your immune system are correct, then maybe this can explain the importance of limiting your sugar intake. Also, if this notion about retracing is correct (it's a 'fantastical' concept), for those who have suffered for a long time with AS, it's likely that these dietary changes would not reap immediate benefits. Lastly, is it possible that this approach represents the lowest common denominator in healthy lifestyle changes that one needs to take in order to get better? I don't know, but some of the data points are truly interesting (even if we can substantiate anything).
What don't I like about the protocol/website?Mind-numbingly Inconvenient – As hard as the NSD is, this protocol is much harder. There are no convenience foods anymore. Eating out is difficult (not impossible) and that can impact one's social life.
Information overload – There is a ton of information on this site. From my own experience, I feel the devil is in the details. Early on, I only adopted the aspects of the protocol that I thought 'made sense' to me. Every time my progress stalled I went back and realized that I wasn't doing something that I 'should'. Ultimately, I attribute getting over the proverbial hump to strictly following the protocol. If you're detail oriented, this may not be a drawback.
The Anti-Medicine Rhetoric – Don't get me wrong, I think Western medicine has much to improve in the management of rheumatological diseases...but discounting the medical establishment is throwing the baby out with the bath water. Science remains one of man's greatest accomplishments, but we need to understand its limitations. It's entirely based on what scientists can observe, and the human body is so ridiculously complicated that they're still a long ways to figuring a holy grail for us. IMO, I think the best approach for disease management entails taking the best aspects from each approach and using it to the best of its ability.
One-sidedness of Website - While I didn't troll on Bee's forum nearly as much as I did at KA, I was a little guarded by the one-sided nature of the forum. While the drama between the two main KA camps (the NSDers and the non-NSDers) can be a little too much for me to handle at times, the differing perspectives offers very good food for thought and allows the user to determine what is best for them. Biased information (big Pharma is just as guilty as this as the alternative camps) can be very misleading and dangerous, so proceed with caution no matter what you try. Unfortunately, there is no such thing as perfect information when determining what our best approach is.
One size fits all approach – I was debating where to put this. Either this protocol is the lowest common denominator in a healthy lifestyle (see last point in the 'what I like' section) or it isn't. I don't think there will ever be a approach that can explain 100% of the variance out there, but I do think this comes closer. How much? I don't know, and I don't think we'll ever know in our lifetime. All I know is that it seems to have helped me and because of the options I was presented (NSAIDs), this represented the best path for me to take.
So there you have it. I am very grateful to those who made me aware of this information as it ultimately helped me enormously. If you do end up taking this path, I encourage you to post your experiences (good or bad) so that others can learn from your experiences. For others who also follow this protocol, it'll be interesting to hear their thoughts (good or bad) on it as well. No matter what you choose, good luck!
Freddie
