Most Kids Dream About What They Want To Be When They Grow Up… I Just Wanted To Be Alive
Imagine being born and being given only 5 years to live.
Being born with a life-threatening condition that means your lungs are completely incapable of fighting off infection.
Your pancreas doesn’t work properly either. So diabetes is not only a possibility but likely. You have to take pills with every meal because your pancreas can’t excrete enzymes to break down your food.
Your lungs quickly become infected from an ordinarily harmless bacteria found in the environment. This bacteria infects your lungs, getting into every nook and cranny.
And just like that, you’re fighting for your life. This infection will likely kill you. And probably within a few years.
To combat this bacterial infection, the doctors put you on oral antibiotics, not a regular 2-week course like most people get. No, this is a permanent course of the strongest antibiotics. Often more than one antibiotic is needed.
When these oral antibiotics stop working, the doctors admit you to hospital where a tube is inserted into an artery in your arm. This tube extends right up into one of the ventricles of the heart. They do this because the IV antibiotics they pump you full of are so harsh that they would erode the smaller veins in your body.
And so begins a minimum two-week course of harsh IV antibiotics; having multiple antibiotics a day injected into your body. Your hearing, kidneys and liver all at risk of damage. All the while the bacteria is mutating away from the antibiotics. Resistances are forming. Superbugs are being trained in your body.
Most of the time the two-week hospital stay we call a “tune up” results in the infection being trampled down enough to be released from the hospital. Back home to only oral antibiotics again. To hour long inhalations twice a day. You’re on sometimes as much as 10 different medications.
Every day you cough up half a cup of gunk. Sometimes you see blood, and you hope to God it doesn’t keep happening. Because if it does, you’ve got a lung bleed and will have to be admitted in to hospital to have it stopped. Your lungs feel like they’re on fire, or that someone is sitting on your chest. Your breathing feels like you’re doing it through a straw.
Yes, I have Cystic Fibrosis and it fucking sucks.
But that’s not the end of it. Not by any means.
Because of the clogged up pancreas, proper digestion is limited, and malnutrition follows. Digestion is so bad, and the energy needs from fighting the lung infection so high, that we need to eat twice as much as a normal person just to keep our weight stable. As fun as this sounds it really isn’t.
But even this is so often not enough to keep the weight healthy.
And so the common body type for someone with Cystic Fibrosis (CF) is closer to that of an anorexic, with what looks like a beer belly from the bloating caused by poor digestion.
This is the life of someone with CF.
Our disease progression is measured by a metric called FEV1. Which is the amount of air you can blow out in 1 second – which shows how healthy the lungs are. This number is represented by a percentage of a normal person’s.
People with CF quite literally live and die by this number.
In CF the lungs start out normal. So 100% lung function.
As the infection sets in, the lungs suffer from scarring and become useless. Parts of our lungs slowly die off, and our lung function drops.
100% and your lungs are normal for someone your height and weight. You can do everything a normal person does.
80% and you’ve got a constant cough; you get breathless on a run
60% and you can’t jog without stopping frequently
40% and you struggle up a flight of stairs
30% and they put you on O2 and start to look for a lung donor
20% and you can slip into a coma that you may never come out of.
Like a cruel countdown timer, this measurement rules our lives. But instead of running out of time when the clock hits zero, we die.
But what makes things worse is the fact that life doesn’t only stop when lung function hits zero. It’s slowly taken away from you more and more, the lower you go. Because losing lung function comes with so much more than that. Every 10% loss means so much more loss of freedom and enjoyment in life. At the lower levels, it becomes more than a full-time job just to stop your health deteriorating more. When do you live when you have to work full time just to keep your head above water? Literally about to drown because your lungs can’t cope.
It seems that not a week goes by that I don’t hear about someone in the CF community hitting zero and losing their life long battle with this chronic and cruel condition.
Only a few months ago I had to watch as a dear friend lost his fight. It struck me to my core.
Many don’t make it to adulthood. Having to literally fight every minute of their lives until the disease finishes them off. Never even getting the chance at a normal life. That’s what effects me the most, not ever being given a chance at enjoying life before it’s taken away from you.
It’s a cruel disease. That never relents. Every time you cough you’re reminded of your mortality. Of how easily your life can be taken away from you.
This is the story of CF.
And it’s one of the worst things anyone can go through.
But this isn’t my story. At least not yet.
And this isn’t a story about this cruel disease conquering me. This is a story about me doing the what many doctors considered impossible.
Of beating all the odds and holding back this cruel disease. For almost a quarter of a century longer than I was supposed to. And still going strong with no end in sight.
Today, as I write this, I’m 29, and my lung function is 103% of a normal person (see below). And to say that, after a lifelong battle is simply amazing.
But I haven’t always been this healthy, in fact, my lowest lung function of 65%, which is only a stone’s throw away from being considered for a heart-lung transplant.
But let’s go to the beginning of my story first.
I was born in Sydney, Australia to loving parents. I was a normal healthy baby from the outside. A whole 6 weeks past before their life came crashing down. The results of a routine genetic test came back.
Their child had cystic fibrosis. It was more or less a death sentence.
I obviously wasn’t old enough to remember what they went through in those early years. But I can imagine the fear, the stress and the unending feeling of loss knowing their child will probably die before he could see his first day of school. It’s something that I wouldn’t wish upon my worst enemy.
So there my parents were, just being told that their son would be lucky to make it to his 5th birthday, and the doctors did something that hardened my parents against my fate. The doctors told them not to try anything alternative “because it just wouldn’t work”.
I know what they were trying to do, in their eyes I was a lost cause. And 99% of the time it would have been in the best interests of the parents of someone like me to accept my fate, because there was nothing really that could help, from their experience.
But my parents didn’t accept this. More in stubborn resilience than knowledge of anything that could help. So they embarked on a lifelong journey of discovery to find anything and everything that could help me beat my fate. This was before the Internet, and so they were forced to visit the local library and scour through the journal articles that were on offer. They bought every book they could find that even had a small hope in helping me, and they took me to specialist after specialist. Both conventional and alternative. Each journal article, book or specialist revealed more of the puzzle that was my condition. And in the end, my parents had a pretty good idea of what would help me.
They completely changed my diet, they added in specific nutrients and experimented with herbs and other compounds to give me a little bit of an edge. The lungs are normal in people with CF when they are born. They are just not able to fight infection easily, and it’s the infections that ultimately cause deterioration and death. So their number one priority was to build up my immune system so I could fight off any infection before it took hold. Whenever I got a cold, they were very quick to stop it progressing.
They never let me know I was sick as well. They didn’t want me to live up to the expectations of being sick. I’ve heard so many stories of people giving up in the face of disease and losing their battle shortly after. I believe the human drive and hope are important factors in staying healthy, and I put much of my success to this.
And what they did worked. I got one infection when I was around 4, but thanks to a quick antibiotics round it wasn’t allowed to set in, and I dodged a bullet for another 10 years. And today I am as healthy as a normal person.
But I wasn’t always as healthy as I am today. My long run of ideal health was about to be taken away from me. I was about to be challenged with an infection that I still fight to this day, more than 14 years later. And the very same infection that will in all likelihood one day kill me. Because once the infection sets in, even if the lungs were completely normal in their ability to fight it, the infection is there for good.
It’s a strange feeling knowing how you’re going to die.
Thankfully it won’t be anytime soon if I have anything to do with it!
What was to end my run of good health was a 10 day outward bound school camp that I was required to go on. I had gotten a cold a few days before, but the decision was made to go anyway. We had gotten complacent, we had forgotten how serious my condition was, and we didn’t think all that much of it.
On the camp I wasn’t fed well, I was stressed out with all of the physical exercise, and couldn’t take the normal things my parents had used time and time again to get better before the infection spread.
The infection set in. By the end, I had a prominent cough. In the weeks following we tried to clear it, like the times before, but it was just too far gone. A course of harsh antibiotics helped but didn’t get rid of it.
I was infected. For good. Because once you’re infected to a point, it’s not possible to get rid of the infection even if the lungs were completely healthy.
But those ten days of improper handling were enough. And it’s a great example of how vigilant you need to be with this disease. Those 10 days could very well have ended my life 10 or even 20 years before I was supposed to.
And so the fight was on.
I was a fighter at my core, but before I was just training. Waiting for the fight to be brought to me. And it came. And I fought. I’ve fought every day of my life since. More than 14 years. And will fight every day until I die. Not taking a day off, because my disease definitely wouldn’t.
But good came out of this horrible situation because it triggered my lifelong obsession with health and nutrition. It lit a fire in me, a stubborn unwillingness to succumb to my fate. And so the research baton my parents were holding was past to me. They had spent the first 15 years of my life researching anything and anything that could help me. And now it was my turn.
So I started researching, I read every book I could get my hands on, I reread everything my parents had meticulously collected and chronicled, I started collecting journal articles, and I started experimenting on myself.
My diet was already quite good, but I still tweaked it constantly. I tried high carb, low fat; I tried high fat, low carb. I gave paleo a go as well. Each time I would see how my body responded, how my now permanent cough reacted.
I tried every natural medicine under the sun to try to keep the infection at bay. I was always taking a number of natural pills like garlic oil or turmeric, and always inhaling something new like glutathione or oregano oil. All in the hope that something would work to slow my inevitable progression from healthy to sick. I would try everything and see how my body would react.
Many of these were failed experiments, but some weren’t, and each time I found an improvement I stuck with it, adding it to my routine.
And for the most part, I remained healthy. I’ve had my ups and downs since then for sure. I’ve had about 5-6 hospital stays when the infection gets a bit out of hand. I’ve dropped to as low as 65% lung function after a 7 month trip in the USA and Central America, and a very scary narrow miss with a very dangerous bacteria that can kill in a matter of months. I write about that experience in my guide on how to treat depression (link to come). But I’d always bounce back with a combination of natural and pharmaceutical interventions. It’s been relatively smooth sailing apart from that.
I’ve managed to live a more or less normal life. But while I’ve been very well, I’ve suffered the “normal” deterioration in lung function in the years since. It wasn’t much, but it was there. And it was enough to be a constant reminder of how my life was slowly being taken away from me. My ticking death clock.
When it hits zero my life ends. It may not be this year or even 5 years from now, but it would happen.
So when my lung function dropped slowly to 87% last year, it was seen by the doctors as an inevitable part of my disease, and they showed no surprise. Even acknowledging that I was really well for my age anyway.
But normal was still lower than I wanted. I’ve never been willing to succumb to this disease, not giving even an inch. I’ll fight to the very end. I’ll never be reasonable when it comes to my life and my livelihood.
And so I made it my mission to find the “magic bullet” that will reverse my decline and keep me well until modern medicine found a more permanent solution. I’ll always have the genetic defect. There was no getting around that. But there was hope. Because in CF the decline comes from the lung infection, and not the genetic defect.
And so ever since getting infected, it became my focus to get rid of my lung infection. No matter what.
To give you an idea of how ambitious this is, even if my lungs were completely normal in their ability to fight infection, the infection is so set in that I wouldn’t be able to get rid of it – this is what my doctors have told me. But they told me I wouldn’t see my fifth birthday as well, and I’m still fighting all these years later. So I see it as an achievable goal.
In the pursuit of this I’ve tried countless things:
- Inhaled glutathione
- Inhaled oregano oil
- Inhaled and oral L-Arginine
- N- acetyle cystiene
- Tumeric/curcumin + genestien
- Numerous diets
- Hypertonic Saline
- High dose vitamin A
- Every vitamin and mineral you can think of
And these are just the ones I remember.
I’ve tried the conventional drugs as well like Pulmozyme and Azithromycin and all the other ones I can’t spell. None of which really helped.
I’ve had stem cell therapy, which involved collecting my bone marrow and fat stores to harvest the cells. I inhaled and took them intravenously. This rather expensive exercise helped for about a month then I returned to normal.
I’ve even flown to The Republic of Georgia (beneath Russia) to try what they call Phage Therapy. Where they take naturally occurring viruses that infect bacteria (rather than larger things like humans) and use these to eradicate bacteria. This helped, but not enough to get rid of the infection for good.
I’ve sent off to china for the raw ingredient in a new drug that was being trailed in the USA. This is one of my more risky efforts but it was worth it in my eyes. This had no effect at all as well.
Many of the things I’ve tried helped a bit. Most didn’t. None gave me what I was looking for.
But while these were failed experiments, they were never a waste of time. Because all the while I knew that each gave me a tiny shot at reversing my disease progression. As the saying goes, you miss 100% of the shots you don’t make.
But I never lost hope, I never gave up. There is always something out there that could potentially help. Just gotta try it and find out.
To not search would be to admit defeat, and lying down in the face of this cruel disease is not something I’m willing to do. Ever.
How many experiments would I have to go through before something paid off? I was about to find out.
Hope Was Here… From An Unexpected Place
About a year ago, I was told about a natural substance that was prescribed as a drug decades ago, that had lost favour with doctors. It was given to people with CF but not any more.
As with everything that had a chance of helping, I immediately wanted to try it.
I contacted the hospital and asked if they would prescribe it, they told me they would, but that it was an expensive drug and to get funding for it they would need to get a committee to approve it. I would then be given 3 months to trial it, and if I saw improvement they would keep paying.
It was about $10,000 a year.
I immediately got the ball rolling on that. But I didn’t stop there, I contacted every supplier I could, even posing as a pharmacist at one point, to see where I could get it from and how much it would be, in case the hospital didn’t come through.
But thankfully it was unnecessary, because a few weeks later I was approved for access to it. An appointment was set to get a baseline reading, and I came in for testing. I did an endurance exercise test and a lung function test. I blew 87% which was my new normal. It was actually really good for my age.
But it wasn’t good enough for me.
And so I filled my prescription and rolled the dice one more time. Not really expecting anything. Not really hoping for a miracle. Just wanting a slight edge.
I started treatment, it was a 4ml vial that I put into a nebulizer and inhaled. Takes about 30 minutes.
I did this morning and night.
At first I didn’t really notice anything, it was like anything that I took, it would make me cough a little more but that’s about it. After a week I was coughing less and I was less productive. I felt a little better, but it was nothing too crazy.
6 weeks past and by the end of it I was feeling good, I was coughing way less and was much less productive. I knew it was helping but I didn’t know how much. I expected a few percentage points increase.
Although the hospital gave me a 3 month trial, I was getting my lung function tested anyway for my quarterly check-up, so it was a good time to see how I was doing.
The way they measure lung function (the health of the lungs) is to put you in a glass cubicle, on a seat, and blow into a tube as long and as fast as you can. About 2 metres (6 feet) away there is a computer terminal that displays the results.
I sat in the seat. Nervous as I always am. I was feeling good but sometimes this can be misleading. You never know until the results come in. Good results and I would walk out of the hospital and go on with my more or less normal life. Bad results and I would be admitted to hospital for 2 weeks of intense IV antibiotics (and shitty hospital food, which is arguably worse than having CF). Add to all of that the psychological burden of knowing I wasn’t doing so well, and it’s not the most pleasant experience in the world. It’s happened about 5-6 times in my life.
So stakes are rather high.
With the nerves hitting me hard, I gave it my best go, even feeling a bit light headed from the effort. I looked to the nurse that was interpreting the results.
“Wow, that was a good one” she said.
“This is a good sign” I thought. Turns out I had blown a 103%.
My lung function had increased from 87% to 103%, in just 6 weeks.
This kind of increase is unheard of. Even in the most promising clinical trials.
Relief flooded my body. I instantly felt a very heavy weight lift off me. I couldn’t stop myself from smiling. Was this the magic bullet that I had been looking for?
It seemed likely, though I was guarded after all of these years. I had experienced improvements before only to have them fail after a few months.
So I didn’t celebrate too much, I was cautiously optimistic. Which is all I can hope for really.
The hospital was convinced though, they didn’t even wait out the 3 months, or make me do the exercise challenge. They approved the drug and I have been on it ever since.
But I didn’t want to jinx things, when your life is on the line it’s important to be practical. So I kept taking the new medicine, kept inhaling twice a day. Kept feeling good.
And at my next check up I stepped up to the plate again, to give it my best shot again. Nervous as always.
And my results were the same again.
Again I felt a wave of relief spread over me. But again I held myself back. Not wanting to get my hopes up again.
But again and again my lung function held up, and it’s been more than a year since. So it’s safe to say that it’s working.
There was no real pinnacle moment when my life changed from slowly declining to being more or less completely healthy.
I never really celebrated my new good health. It just kind of became a part of me. Each time I would get a good result my mind would rest a little bit more, until I didn’t think about my condition at all. The feeling of more or less constantly worrying about your health is a nightmare than many people can relate to. It clouds every day things and interactions. It acts as a ceiling to your happiness, and it distracts you and stops you from being present from life.
So I am well now, and I’m cautiously optimistic of being well in the future. There is always that chance that things will stop going well for me, but for now I’m just going to enjoy my life unimpeded. I’m going to do what I love and live every day to the fullest. But I’ll always remember how important something as simple as having your lungs full of air is. Something that so many people take for granted, but that means so much.
Throughout my life, I’ve learned a lot. And so I decided to start this website to share what I have learned. I’m just a normal person put into an abnormal situation. I’ve had to fight, to learn and to adapt every day of my life just to stay alive.
One of the greatest lessons I’ve had to learn is the flaws in the medical system.
The System Is Broken
According to the WHO, over 422 million people worldwide have diabetes, 350 million have depression, 11% of men and 15% of women are obese, and 17 million people a year die from cardiovascular disease. We are pretty sick as a culture.
This is in stark contrast to the health of cultures that have had no contact with western culture. Who rarely if ever get diabetes, obesity, cancer, heart disease or any of the diseases we expect to get when we age. Who live into their 70’s frequently and aren’t genetically protected from these diseases.
And strangely this is in spite of the fact that we spend more money on healthcare than almost any other need. In the US this equates to a whopping $8362 per person per year.
I believe that the vast majority of doctors are truly in it to help patients. But it’s becoming increasingly common for doctors to to accept payments from big pharma. An estimated 684,915 doctors in the USA have accepted a total of $3,490,000,000 since 2013. Research has also shown that even something as small as a free meal from big pharma leads to a higher percentage of brand name drugs being prescribed by that doctor. So any medication that you are on right now might not be because it’s the best for your condition, and might instead be because big pharma is lining your doctors pockets. Scary right?
Conventional medicine reportedly kills more than 780,000 people every year in the US alone as well.
Why is healthcare so high and health so low? Because a drug solution 9 times out of 10 is a band-aide solution, designed to treat a symptom of a disease and not the disease itself.
Add to this the fact that a commercially funded study is 5.3 times more likely to support the sponsor’s products than non-commercially funded studies and we start to see why the health system is so broken.
It’s a bit like Ford coming out with a new sedan, but instead of independent inspectors taking a look and making sure it meets all safety standards, Ford designs it’s own safety tests and does the testing themselves. Who would buy a car that went through that process? Not me. But everyone is somehow OK with putting medicine in their bodies that have gone through the exact same process.
The concept of publication bias also adds to the confusion of what’s good for the body. It’s still perfectly legal for a drug company to perform 10 trials using the same protocols and outcome measures, and selectively publish only those that support the drugs beneficial effects. Even though by pure chance they’re likely to come up with something.
This happened in the antidepressant market for instance. When researchers looked at what trials had been published and which ones hadn’t, they found that positive studies were 12 times more likely to be published than ones that showed the drug to be ineffective (1). What makes matters worse is the fact that some of the negative studies were published in a way to make them appear positive. The authors calculated that this selective publication lead to a 32% increase in the perceived effect of the drugs in the studies.
The depression drug market is no different from any other drug market. How many drugs are we being fed that are useless or even dangerous? It’s hard to say.
One of the biggest sources of confusion for me is the fact that it has become normal for doctors to get almost no training in nutrition. A study showed that the typical doctor gets only 19.6 hours of nutrition instruction in their entire medical degree (1). Only 25% of universities actually required a dedicated nutrition course. And that this training was only really provided in the first 2 years of medical school. So by the time they qualify as doctors, how much of this information is forgotten?
Though rare, some universities don’t even offer nutritional training, so its entirely possible for your mechanic to have just as much nutritional training as your doctor. Scary stuff right?
There’s something very wrong with the system when doctors aren’t trained in one of the most important aspects of health.
And it gets worse. Because another study looked at how long it takes for evidence based information to get from research to clinical practice. They found on average it took 17 years! So effectively your doctor is treating you with the most up to date information that came out in 1999 (1). This is the same year the Nokia 3310 came out. If your doctor took a call from that mobile while you were in the office, you’d probably make a bolt for the door. So how do you feel about being treated with information that is that updated?
So these are the issues we have with drugs and the science behind them, but this isn’t the end of it. Let’s look at the organisations that are supposed to help those with diseases. A 2011 study found that 52% of board members for organisations like the American Diabetes Association and the American Heart Association were funded by companies with conflicts of interest. How can we expect an organisation to be unbiased when it’s being run by people working for big pharma and big agriculture?
It doesn’t stop there though, running these organisations is expensive, and so they rely on corporate donors to keep their organisation alive. The American Diabetes Association for instance has 10 of it’s top 10 donors as drug companies. So the board of these professional organisations are run by those with corporate interests, AND they are almost entirely funded by drug companies. So how is it possible for them to be unbiased as far as health policy goes?
When we take a look at the Nutrition and Dietetics Association it’s just as bad. This is America’s largest organisation of food and nutrition professionals, with more than 100,000 members in the USA. According to their website: “the Academy provides expert testimony at hearings, lobbies Congress and other governmental bodies, comments on proposed federal and state regulations, and develops position statements on critical food and nutrition issues.”
Sounds great right? These guys are here to help spread the word on healthy foods and pressure the government to improve the health of all of us!
Well, not quite.
Let’s take a look at the some of the past and present corporate sponsors of this association: McDonalds, Pepsi Co, Coca Cola, General Mills, Kellogg’s, Unilever, The Sugar Association, Wendy’s, Hersey’s Chocolates. As with the American Diabetes Association above, how is this association supposed to be unbiased when their existence relies heavily on sponsorship from the above companies?
Public health lawyer Michele Simon, who has been investigating these issues very extensively states the association is “deeply embedded with the food industry, and often communicate[s] messaging that is industry friendly.”
The association also publishes nutrition “facts” sheets for the general public. Examples are “Cocoa and Chcolate: Sweet News!” which was sponsored by Hersey’s; “Adult Beverage Consumption: making responsible drinking choices” sponsored by the Distilled Spirits Council; and “What’s a Mom to Do: Healthy Eating Tips For Families” which was sponsored by Wendy’s.
The association also allows food companies to offer educational seminars to teach dieticians how to advice clients in a way that advances the food company’s interests. Coca Cola for instance sponsored a seminar that attempted to prove that sugar was fine for kids to consume.
So adding it all together we get a clear picture: we as a society are sick, and the system we’ve got in place is hopeless at providing help. There’s no other way of putting it.
My parents learned this very early on, dealing with the medical system one on one. So the lesson that they learned is that:
Doctor’s Don’t Know Everything
I’ve seen it all too clearly that much of what the doctors do isn’t based on science, or logic. But rather politics and inertia.
For instance, it was common practice when I was born to strip babies down naked to weigh them. To get an accurate reading. My parents decided to ignore the doctors with this, reasoning that it was unnecessary to expose a child with a compromised immune system to the cold for very little gain.
Another example of common sense going by the way side was the CF camps that were held when I was younger. They would invite CF kids from all over the state to come and all hang out together for a weekend and get to know each other. It sounds harmless enough, until you remember that every single one had a life threatening lung infection, and that most of these kids would have different bacteria from each other. So putting a heap of CF kids together in such small proximity only ends up breeding these strains with each other. This is the worst possible thing that they can do and there’s no doubt that this cost many lives. There is a 6ft rule now in hospitals with CF patients, we have to stay a minimum of 6 feet away from each other as a precaution. Thankfully they have stopped these infection camps. Change does happen slowly but lives are unnecessarily lost in the meantime.
Probiotics are another example as still, in 2016, they are not supplied to CF patients. This is in spite of the copious literature implicating poor gut bacteria to a whole host of diseases, and the proper functioning of the immune system. CF patients are typically on one or more anti-biotics 100% of the time. And so to not repopulate their bodies with good bacteria to offset the anti-biotics is insane to say the least. My prediction is that the gut will be a very important treatment avenue in the years to come in CF (and almost every other disease), but until the mainstream comes around many people will lose their lives prematurely. I guess we’ll give it another 17 years and see.
Finally, in what is perhaps the worst advice that could ever be given, when I was born my parents were advised to “feed me on junk food”, to get enough calories into me so I would keep my weight up. The doctors saw that those that had healthy weight also had good lung function. So they would try whatever means was necessary to get weight up. But I’ve come to believe that their association was wrong, the healthy weight comes from a healthy lung function and body, not the other way around.
So when my parents were told to feed me on whatever you’d find at a party, my parents decided to ignore this very bad advice; junk food is high in calories yes, but it’s also horrible for the body in so many different ways. The body of someone fighting a life-threatening condition needs the best food to nurture the immune system, and junk food does the exact opposite, impairing the immune system and breeding inflammation. How well would you be if you lived on junk food? Most normal people would get sick on that diet, and so it makes no sense to compromise the health of someone fighting a life threatening disease just to keep their weight up.
From my experience, my weight has always been good unless I eat junk food as well. For people that struggle to keep weight on, it’s important for the body to be working as well as possible from the fuel you provide it, to stay healthy.
So reading the above, it may seem like I’m completely disregarding modern medicine and am happy to wander into the wild completely naked and grind up whatever herbal root I could find to apply to my temples (while singing kumbaya of course). I’m not here to knock the mainstream doctors and nurses, however. They are the most caring and knowledgeable people I have come across. Without your doctor, you probably wouldn’t be alive. And I definitely wouldn’t be alive. They are stuck in a broken system, however, where logic and evidence so often take a back seat to money and politics.
The system is far from perfect, but disregarding modern medicine is as big of a mistake as blindingly trusting the system to help you. Drugs can and do save many countless lives every year.
But to disregard the negative aspects of the system and blindingly trust it is a mistake.
One might turn to alternative medicine if they’re disenchanted by the mainstream medical system, and while alternative medicine has no doubt been crucial in so many people’s victories over their disease, alternative medicine suffers from issues as well. It’s not a matter of “conventional medicine is the devil, let’s all drink this unproven root drink that cures everything”. Alternative medicine has just as many pitfalls, even arguably more, as it’s unregulated and open to abuse.
The Problems With Alternative Medicine
There are as many problems with alternative medicine as there are with the current conventional medical system.
I define alternative medicine as any procedure or medicine that you can’t be prescribed by a conventional doctor. So a very wide field.
So here are the pitfalls with alternative medicine.
Firstly, it’s very easy to selectively pick studies to prove your point of view. Without proper interpretation, these studies are so easily misrepresented or misconstrued. There could be 20 studies showing that something was completely ineffective, but if you’re only presented with the one study that showed it does work, then it’s going to be pretty persuasive. But you’re not being shown the full story.
Secondly, because of how our brains are wired, stories and anecdotes are very powerful persuasive devices, more so than actual data. So when your friend told you about how they ate a clove of garlic every day and never got sick, that influences you more than a placebo controlled trial that says that garlic doesn’t do anything for colds (I don’t know if this study has been done, just using it as an example). The placebo-controlled trial should be more persuasive, but the story ends up swaying you more because we’ve used stories since we invented language
Thirdly, the placebo effect is powerful in leading to positive benefits even if the intervention doesn’t do anything. People’s expectations lead to healing much of the time more than the treatment itself. And so it’s easy for people to be misled by their own placebo effect to show that something does work. And once this happens then an unconscious association in their brain is set up and they are forever convinced that the benefit they received is from the treatment.
Additionally, all alternative medicine is lumped into one group, there is a whole host of proven, evidence-based treatments that are natural, but they are so often written off because they are included with the quackery of the unproven stuff. Trying to make sense of it all is very difficult and even impossible if you haven’t had any training in how the body works.
And finally, as most people aren’t trained in science and medicine (both are very important in dealing with these subjects), it’s easy to create an argument that exploits this ignorance. Human biology is by far the most complex thing in the universe, and despite the amount of research that has been done we still know very little about it. The experts in each of the fields of human health often don’t know everything, so how are we supposed to know what is truth or just a fancy story? We really don’t. And so on the face of it, many health theories can make perfect sense, but a further look at the evidence, or a greater understanding of the biological system that underpins the theory, will poke massive holes in the theory. Something that is not apparent to those not trained.
And so from the above, it’s easy for unscrupulous predators to use selective facts, persuasive stories and the placebo effect to great use to convince people (and often themselves) that they are helping. When in fact, the only thing that is really changing is their bank account.
So it’s a minefield out there. The mainstream medical system is screwed, and the alternative health fields suffer from just as many flaws.
So What Is The Solution?
It’s a tricky one; you can prove pretty much anything with science if you selectively pick studies and tell a good enough story.
So the solution to this is to start with a logical framework. A lens to view scientific research through. As the evolutionary biologist Christian Dobzhanzsy stated “nothing in biology makes sense except in the light of evolution”, and while he wasn’t specifically referring to health and nutrition, I think it still has a fair amount of relevance here; after all, the health and nutrition of the human animal is encompassed by biology.
So we have the first guiding rule to view scientific research through: does it fit in with our evolutionary past?
The second rule has to do with what the human body is naturally adapted to and has thrived on in the past. It has to do with the exceptional health of hunter-gatherer tribes and the lifestyle they lead. The idea is that if you take a wild animal out of its natural environment and into captivity, you’re going to feed it the same things as it had in the wild right? To do anything else and expect the animal to be healthy would be rather optimistic, and misguided.
So if someone is recommending you do something that is not congruent with the above two rules, then exercise extreme scepticism. You should still be sceptical of any health claims, but these should be big red flags that there is something not quite right.
The third is to go to the source of information yourself, to search for review articles on specific topics or if there aren’t any the single studies. The site http://scholar.google.com.au/, for instance, is invaluable for this. It’s google but for scholarly articles. A simple search query like “allintitle: depression placebo-controlled trial” will churn out every placebo-controlled trial done on depression for instance (“allintitle:” will churn out any results with every word in the title to narrow the results down). This is a very time-intensive endeavour, but it’s effective. I never take someone’s word for something unless I’ve read through the entire journal article they cite. If they don’t cite any source, then all they have is a story, and I disregard it completely.
Finally, if you are following an “expert” in a particular field, then be very sceptical of their message, assume they are trying to skew the information in favour of their particular viewpoint until you can prove otherwise. I can go out and find 10 different experts in the same field, and they will all have 10 separate, often contrasting opinions of certain topics. So trusting in one expert is fraught with danger. The framework of evolution and our past lifestyles will work great in these cases, though isn’t fool proof.
So these are the lesson’s I’ve learned in my 28 years of living with a life-threatening disease. A lifetime of fighting, learning and searching.
My lung function as I write this is 103% of a normal person. I still need to exercise regularly, eat very well and inhale medicine twice a day. But doing all of this allows me to live a more or less normal life, and that’s all I’ve ever wanted, to be able to do that. Not bad for someone who was told they would be lucky to live past 5 years old.
From my experiences and my studies (I’m studying to be a nutritionist at the moment), I formed a framework for treating the body in health and disease.
So when my acne was getting really bad when I was in my teens, I used this framework and tools to find out what was going on. I managed to fix myself in only 2 months. Going from covered in pimples to completely clear. And I know is wasn’t just the natural progression of my teen years, as my acne would always come back if I stopped treatment for more than a month or so.
When I started suffering from depression 4 or 5 years ago, the same thing happened. I decided that I wasn’t going to put up with it, and I started to learn whatever I could about the cruel disease. It took a while, but I found the answer to my depression and believe it or not went from suicidally depressed, to being 95% better in the space of 2 weeks.
I never told anyone I was sick, that I had a life-threatening disease. I feared being treated differently, and so I kept it to myself for the longest time. But even though no one knew I was dealing with this health condition, people saw how well I was compared to the average person. They saw how I treated my body and how much I researched and knew about health and nutrition.
People started asking me questions early on in life, about what I thought about certain health topics, and I’ve been fortunate enough to have been able to help some people along the way. These conversations quickly turned to a desire to spread what I knew more broadly. I’ve written two books, one on depression and the other on type II diabetes. I’ve had people from all over the world email me and tell me how they have been helped by what they read in those books. I’ve even had people tell me they had reversed their type II diabetes, something that many doctors believe isn’t possible. But it is, I assure you.
I’ve learned many things in my life, and one of these is that the line between what we think is possible and impossible is very blurry, and with the right plan, the right attitude and the right understanding of the human body, anything is possible. I know, I shouldn’t even be alive right now, and yet I’m as healthy as a normal person. Something that baffles the doctors to this day, and something that my doctors 28 years ago would have told my parents was impossible.
I’m really just a normal person, thrown into an impossible situation, and it was literally do or die for me. And so I learned everything I could, I fought, and I’ve so far won.
I’ve learned many life lessons in my relatively short life. But above all, I’ve learned that if you aren’t healthy, that you can’t truly be happy.
And that’s what I’m doing with my life, that’s my life’s mission, to give people the tools to heal themselves, to allow them to become truly happy, and to be able to focus their energy on the things that truly matter in life.
The purpose of me starting this website is to share my story, to inspire others. Whether they need the motivation and the assurance that they can overcome something as daunting as an incurable disease, or if they just need to lose a bit of weight and have a bit more energy.
I’m here to share what I’ve learned from a lifetime of battling a life-threatening condition. A lifetime of study and experimenting.
So while I’ve got breath in my lungs, I’m going to do what I love: travel, surf and teach people about nutrition.
Every day of my life past the age of 5 has been a miracle, a blessing. I’m here to share that blessing.
So come along with me, in my relentless search for everything I can find to promote health and longevity. Let me prove to you that with nutrition anything is possible.