My Story (2016)

“When bad things happen in your life, you have three choices. You can either let it define you, let it destroy you or let it strengthen you.”
Dr.Seuss

2016 was filled with many ups and downs, peaks and valleys. However I’m glad and thankful to still be blessed with a healthy body, loving and amazing family and friends and comfort and security all around in Singapore. 

Coming back from the 5-month exchange in Arizona, I was nursing an ITB injury and so had to give up running for a few months. This didn’t bother me that much as I had decided to rejoin my NTU Canoeing team and picked up the sport of Sprint Kayaking again. Fast forward to March and my efforts paid off with a Silver in the K2 1000m with my best buddy Luke, and a Bronze in the K4 200m. Although I have to say I was mostly pulled by my fitter and faster teammates.

However, the constant training twice a day on most days certainly took a toll on my body. That combined with my decision to stop the Symponi injections (last one was in September 2015), meant that my Ankylosing Spondylitis was slowly creeping back. I decided to stop because its a strong immune system suppressing drug which can have undesirable side effects in the long term. Also it placed a heavy burden financially on my parents as it costs $2000/month.

After “retiring” from Canoeing, I was nursing two really painful feet afflicted by Plantar Fasciitis. It was so bad that I had to take some days off school just to let them rest at home. Because of this, I was unable to run and take my IPPT and was called up for a summary trial with the Army haha 😥

Due to financial reasons, I did not choose to continue seeing the private Rheumatologist at Novena Specialist Centre and so had to go the long route which would ultimately get my treatment subsidised by the government. This involved first seeing a doctor at the Polyclinic who would refer me to a specialist from the department of Immunology in one of the hospitals in Singapore.

Because of this and the long list of people waiting, I only managed to get an appointment with a Rheumatologist in July, through which I promptly asked for the injection as my symptoms were spreading to other old sites of injury by then such as my hip and back. This time, the new doctor was insistent and recommended a different injection, known as Humira. This one was about $900 per injection and had to be administered fortnightly. Compared to the ~$2000 Simponi (once a month), this was less expensive and I could redeem a free one after several purchases so I went with this.

Apparently, Humira was not as effective as Simponi, as I should’ve guess due to the higher frequency of dosage. It took a full week before I started to feel the symptoms being relieved, compared to a few days with Simponi. I took a total of 3 doses every fortnight consecutively before stopping. In the follow up visits with the Rheumatologist, I told him I had stopped because it made me more susceptible to illness. Which is partly true but the real reason was that I did not want to become reliant on this all my life.

I was feeling rather fine for a month or two before the symptoms started to return again, most of the time in the periphery joints of my limbs such as the Plantar Fasciitis in my feet. And they would not go away with rest or ice and instead keep getting worse until I took another jab. That’s the characteristic of this autoimmune disorder. A normal human with an injury would recover fully in a matter of weeks but my injuries would keep worsening and I would get more injuries, seemingly randomly, if left untreated.

By now I was starting to notice a pattern. I was consistently tracking how many jabs I took and how many days since the last jab. After one jab of Humira, it took about 60 days before the symptoms returned with a vengeance. I have had 5 jabs so far and today, on New Years Day 2017, it is now 93 days since my last jab.

Naturally, after 60 days or 2 months since my last jab in October, the symptoms started returning. First with lots of pain in my feet from Plantar Fasciitis. I suspect it was because I had started to become less strict with my diet and had been travelling a lot and enjoy lots of sumptuous local cuisines. The straw that broke the camel’s back was my last trip of the year to Taiwan where I indulged freely in the local Night Market cuisine. All sorts of gluten containing deep fried food went into my stomach and gut and each time I would pop some activated charcoal in an attempt to undo some of the damage. Unfortunately, I now know that does not work as I had an explosion of autoimmune symptoms (also known as a flare up) when I came back to Singapore in late November.

At this stage, I was in quite a bit of pain and feeling stressed that I had to continue working in December, which was not part of my original plan. Stress is very crucial to take note of for anyone with an autoimmune disorder as it often leads to progression of the disease. I was very tempted to take my last injection, which I had been saving for an emergency like this in the back of my refrigerator. Thankfully, I discovered some new methods of curbing inflammation and autoimmune flareups from some of the podcasts I had listened to. This has helped me hold off from the injection for another 30+ days.

Discovering Fasting

If I’m not wrong, it was this episode of the Bulletproof Radio podcast as well as this episode of the Tim Ferriss podcast which got me informed and interested in fasting and its miraculous abilities to reduce inflammation and reset the immune system. Following more research, I decided to try my first 1-Day Water Fast on 7th December.

The results were astounding! That one plus day fast was able to reduce the inflammation in my system significantly, as evident by the reduction in pain in most chronic injuries and an almost elimination of aches in my joints the next day. I was thrilled but new the storm had not passed permanently. A paper I found based on case studies of patients with autoimmune disorders stated that most were able to put their diseases into remission with 1 to 3 weeks of strict water fasting. (Remission means no symptoms whatsoever for an indefinite amount of time, but its not a cure and the disease could flare up again due to environmental or internal triggers) I had only done a day of fasting and true enough, within 4 days, my dimmed down symptoms came back. I then proceeded to carry out a 2 Day and a 3 Day Water Fast separated by a few days of eating and recovery. True enough, each time, by the 4th day after fasting, the symptoms would return.

Next I tried a 4 Day Bone Broth Fast which certainly helped with symptom reducing and healing but this was not as effective as the strict Water Fasts. The very night that I broke fast, symptoms returned and I was feeling immense aching in my joints and feverish all over. There could have been some confounding factors such as stuffing myself with starchy foods when I broke fast as I had just tried out a new Coconut Banana Bread recipe and we had a extended family pot-luck gathering that evening too.

The very next day I decided to embark on a 7-Day Fast as a last ditch attempt to put my autoimmune disease into remission. This 1st Day was strictly water only but I was tempted to drink some Bone Broth on the 2nd (2 bowls) and 3rd (1 bowl) days. This was unfortunate but at least I found out that drinking the broth made me hungrier the next day. This time, unlike the previous 2 and 3-Day Strict Water Fast, I could feel my tummy rumbling! Something that did not happen when I consumed water only. Apart from that, the first 3 days I was consistently sipping on Green Tea as I had heard on another podcast that Green Tea has immune system boosting effects and was good for people with an autoimmune disease. Although I do not think the Green Tea affected my fasting state, it did however give me lots of bad breadth and a lingering acid taste in my mouth.

The ‘Fake’ Fast?

The Bone Broth however definitely affected my fasting state as I got hungrier if I went too long without it. Drinking it also filled me up with a sense of satiety like a full meal even though it was nothing but a bowl of soup! I suspect its because the broth is filled with amino acids and collagen, all proteins albeit in their simple forms. Any carbohydrates or proteins in my system will cause insulin to rise and put me out of ketosis and out of the fasting state. Further research led me to this article which describes how Bone Broth has high amounts of the amino acid Glutamine which can be easily converted to glucose. No wonder…

Today is the 6th Day and my 3rd Day of Strictly Water Fasting after that 3 days of Bone Broth confusion. I have not felt much of any hunger since giving up the broth but now I’m starting to think these 7 days might not be enough especially since I might have to discard the first 3 days.

Fasting is pretty mentally challenging, even more so when everyone around you continues eating regularly. It seems my sense of smell has been keenly amplified as I am not able to smell all sorts of food being cooked in the neighbourhood around my house. Maybe its just because I haven’t paid much attention to these before and I’m just much more sensitive as I long to eat again. But I am not writing this to complain although I really long to eat something again, not because I’m hungry but because I miss the joy of eating. It truly is a gift from God to be able to appreciate and relish the food we eat.

Other Healing Solutions

1. HDC (Hymenolepis Diminuta Cysticercoids)

This is another solution I’ve found through the Bulletproof Radio podcast, specifically this episode.

HDCs are the “larval stage of a small helminth. It grows in grain beetles, like mealy worm beetles, which were commonly in our food supply up until about 100 years ago”

The hygiene hypothesis suspects the rise of autoimmune diseases in our generation is linked to the creation of extremely hygienic environments by us humans which most of the developed world now lives in. This reduces our exposure to microorganisms that have inhabited our systems in a symbiotic relationship significantly. Thus encouraging the breeding of bad-bacteria and coupled with environmental factors have led to a significant rise in autoimmune related chronic diseases.

In the past, we were routinely exposed to helminths, “a higher organism (animal life) which normally lives in people. Up until about 75 years ago, prior to modern food handling practices, HDCs were common in our food supply as it grows in grain beetles, like the common mealy bug.  It is still common in less developed countries today, where grains and other foods which are not highly processed and frequently eaten raw.”

These HDCs have a unique ability to colonise the guts of vertebrates. “Colonization of humans is rare and generally without any adverse symptoms, even in developing countries where the organism is very common (Wiwanitkit, 2004). Thus, by definition, the species is not a parasite. At the same time, the organisms efficiently supplement the biome.”

According to this paper:

“Helminth exposure tends to inhibit IFN-γ and IL-17 production, promote IL-4, IL-10, and TGF-β release, induce CD4+ T cell Foxp3 expression, and generate regulatory macrophages, dendritic cells, and B cells. Helminths enable protective pathways that may vary by specific species and disease model. Helminths or their products likely have therapeutic potential to control or prevent immune-mediated illness.”

Also from the podcast, I was fascinated when Dr.Sid Baker mentioned the effectiveness of HDCs and Helminth therapy. In some cases, even autism symptoms were treated and reversed after the first dose!

I have since subscribed to a dosage of 30 HDCs  every 2 weeks. This was the minimum amount suggested by the very responsive administrators at biomerestoration.com.

I have not experienced any side effects whatsoever but am still looking out for beneficial effects with regards to my autoimmune disease. Judy from biomerestoration.com told me that it may take months (at least 3 months) for my immune system to begin readjusting and since my autoimmune system is acting up so badly, it might be a good idea to take a higher dose. However, due to financial reasons again, I am reluctant to increase the dose as it currently costs me about SGD$100 every 2 weeks.

She also consulted with another doctor on hand when I asked if fasting would kill off the HDCs since they feed on the food passing through the gut to survive. Dr.Marc emailed me back to assure me that fasting should not kill them off since they have access to an unlimited amount of intestinal mucus “which is really just N-linked glycoproteins means that even when you fast, they would still have plenty of food available and certainly a high carbohydrate content.” So thankfully I’m assured regarding this topic.

I will continue to take the HDCs and am considering increasing the dosage while paying for it with my savings.

2. Dietary Interventions: Fasting, AIP and the No Starch Diet

Recently I’ve been reading up a lot on the Autoimmune Paleo Protocol (AIP) and through this episode on the Phoenix Helix podcast, learnt about the No Starch Diet which was developed specifically for people diagnosed with Ankylosing Spondylitis.

The AIP diet is basically a Paleo elimination diet which eliminates all foods suspected to have any reaction with the immune system such as alcohol, eggs, diary, nightshade vegetables, all grains, nuts and seeds. After a period of time following the diet strictly (30-60 days), foods are reintroduced one by one to test for sensitivities. If symptoms come back, then the food is eliminated for good. If not then it can be reintroduced to varying extents.

The No Starch (NS) Diet is something new I’ve found recently. I can’t believe I haven’t heard about this diet thus far in all my research. This diet is based on the research of Professor Alan Ebringer who has found a link between the disease and an “infection of the terminal ileum and ascending colon by the bowel microbe Klebsiella.

“Over 95% of AS patients possess the HLA-B27 antigen whilst it is present only in 8% of the general population. The Klebsiella microbe has molecules which resemble HLA-B27 and this is the reason why AS patients generally belong to the HLA-B27 group.

In addition, the pullulanase molecule of the Klebsiella microbe crossreacts with type I collagen found in tendons and bone and also with type IV collagen found in basement membranes of retina and uvea, thereby explaining the pathological sites of AS.

When one eats large amounts of starchy foods (bread, potatoes, cakes and pasta), the Klebsiella bacteria feed on it, multiply and then the immune system of the patient makes antibodies against the microbe and some of those antibodies will also have activity against HLA-B27 and against collagens in the spine and uvea, thereby acting as tissue damaging autoantibodies – hence the need to ABSTAIN from these foods.”

Thus the aim of the NS diet is to starve out the Klebsiella microbe by depleting it of its major food source – starch.

Healing Protocol Moving Forward

Moving on, after the 7 Day fast, I have a few options.

The first is to take the injection if symptoms start reappearing after 4 days. I need my body to function well enough to last the next semester in school where I have a compulsory sports module, Squash, to complete too.

The second is to continue a mix of fasting and a combination of the AIP and NS diets. Besides eliminating all those non-AIP friendly foods, I would also have to remove the starchy foods allowed on the AIP but not on the NS diet. That would include all tubers like sweet potatoes, yam, tapioca, taro, and certain fruits like bananas.

Fasting wise, on option is to continue to do a water fast once a week (on Fridays) and do a 7-Day water fast once every 3 months to hopefully reset my immune system periodically.

Another idea is to do a more frequent cycle of fasting and not take the injection. This could mean fasting on alternate days, or on cycles of 3 or 4 days fast with equal days of recovery or fasting for most of the day and eating only one meal a day (dinner).

Either way, fasting has been so beneficial in controlling the flare up of my autoimmune disease that I am sure I will continue this ancient practice for many years to come.

2016 Highlights

Without getting too gloomy with all my autoimmune problems, this past year has also had plenty of high points. Particularly worth mentioning is my internship at SuperFit which offered me many chances to travel abroad.

I think this year was the year I’ve travelled out of Singapore the most! Starting with a short trip to Kota Kinabalu, Sabah, I then went to Shang Hai to put up a Spartan race, then to Malasia, Bintan and finally Taiwan, all for Spartan Race related work. In between I took a short impromptu trip to Indonesia with a bunch of great friends.

To Sum It Up

2016 was a memorable year. I have learnt so much and experienced so many new environments, cultures, cuisines and adventures. I’ve made numerous new friends and continued to appreciate and strengthen the existing relationships I cherish. I could not ask for more and certainly could have done many things differently and improved on them but the past isn’t something to dwell on but to learn from. That’s why we have 2 eyes built in front of our heads and not behind – to always look forward.

I have to acknowledge that this autoimmune disease will stay with me for possibly, the rest of my life. However, I should not let it be the bane of my existence. Instead I should harness these challenges and grow from them. Like the tough steel sword forged in flames, my suffering should only make me stronger. The struggle will never end so I will have to learn and manage it as best I can and never give up. I am hopeful that its possible to live a pain-free life without medication and that things will get better.

Happy New Year everyone! May each year be better than the last!

To your health,
John

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2 thoughts on “My Story (2016)

  1. I’m glad you discovered AIP, as I was going to recommend it. I would limit fasting to a couple times a year, as it is hard in your body and not particularly healthy. The AIP will work, with patience and time. I would also recommend looking into the SPECIFIC CARBOHYDRATE DIET, or SCD which is similar to AIP, but a little less restrictive. I look forward to reading about your progress.

    Liked by 1 person

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