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My Story....

After Accutane

The photo above is me….

In 2008, after 10 years of working out in the gym, I was finally happy with my strength and fitness, and the way my body looked, however, there was still one thing I wasn’t happy with - my acne.

It was very mild, just a few spots around my nose, on my back, and my chest, but as anyone who has suffered with acne knows, you see it far more than other people do.

From the age of 18 I saw a doctor in Guernsey, where I live, about this issue, leading him to prescribe me with drugs like Oxytetracycline, Erythromycin, and Lymecycline, all of which were referred to as ‘mild antibiotics’. During this decade I also had problems with recurring tonsillitis, chest infections, and a generally weak immune system, the antibiotics no doubt contributed to this, you will learn why later in the story.

The ‘Last Resort’

In January of 2009, at 29, I went back to see my doctor about the problem, who said, “well, we’ve tried everything else, I think it’s time to try Accutane”. This was a drug I’d heard about from a friend, when he was at medical college, about seven years prior. My friend told me how strong the drug was, and also told me that girls must also take a contraceptive when they use it, as any child conceived while on Accutane, would be born with horrendous deformities.

This known side effect was one of many that appeared on a list given to me by my doctor, which had a space at the bottom for my signature, agreeing that I knew the risks involved. Unfortunately he adopted a very laid back approach, and told me he didn’t think I had any reason to be concerned. He also advised against me doing my own research on the drug before I took it, so I trusted his judgement.

I then proceeded to take the prescribed course, 80mg a day, for four months, during which time I had to endure most of the side effects I was told about. Dry skin, peeling lips, fatigue, back pain, stiff joints, constipation, and a bit of depression. What I didn’t expect though, was for these symptoms to continue after taking the drug, progressively worsening as time went by. My skin was clear for a couple of months, but all the side effects remained.

After the four month course, I felt like a weak old man, retiring to bed at 8pm every night, dead on my feet. This did improve slightly, then worsened, by which time I was certain the drug had left me permanently damaged. I was no longer able to exercise as my muscles were too weak, and my energy levels were at an all time low.

By this point, my acne had returned, so I went back to my doctor, who put me on another course of Lymecycline, which I stayed on for a very long time. I believe the decision to put me back on this antibiotic long term may have fanned the flames of the damage already done by Accutane.

The Longterm Side Effects

In January 2010 for around six months, I battled fatigue, and a newly developed anxiety problem, I returned to the doctor, told him I wasn’t feeling well at all, and that I thought the Accutane had left me permanently damaged.

“There’s no chance you could still have side effects, you’re not on the drug anymore,” was his response -- a sentiment that was contrary to something that he told me before I went on it. Initially he told me, “this drug works by poisoning the body, so that your skin produces less oil”, which would seem like a fairly long term side effect to me. He then asked me, “have you considered that it might just be life making you tired?” One of many patronising comments I will always remember. He then conceded to a blood test although stated he didn’t think he’d find anything. Two weeks later I received a call from my doctor’s office, “Tom, can you come in to see the doctor, something wasn’t right with your bloods.”

I walked into his office, sat down, and was told that my vitamin D levels were “dangerously low”, because I supposedly had not been getting enough sunlight, so he prescribed some vitamin D supplements.

This didn’t add up for me, I was spending a lot of my working life outdoors, and certainly didn’t shy away from the sun, but I was hopeful that increasing my vitamin D levels would cure my ills, so I took the supplements. Any positive effects I felt were pure placebo, and didn’t take long to wear off.

About a month later, I travelled to Fuerteventura for a week, this was when I began noticing real problems. It’s strange how you only seem to notice differences in bowel habit when you’re away somewhere, and while on this holiday I had no bowel movements at all, I was totally constipated and nothing I did seemed to help. I was eating a ton of dried fruit and cereal at hotel breakfast times, but nothing was shifting. I also noticed a huge decline in sex drive around this time. It’s hard to map things out on a timeline, I wish I had kept a diary, but this was about the time I changed from a ‘glass half full’, to a ‘glass half empty’, kind of guy.

My personality gradually began to change, I’d just started a new job, and was dealing with feelings of anxiety on a daily basis. At first I put this anxiety down to being nervous about learning new skills, but it never went away. Anxiety is a difficult thing to understand, if you’ve never experienced it, the best way to describe it would be feeling like you’re going to fall from a high place, that feeling you get for a split second, before you grab onto something, it’s like that, but it just continues, with no end in sight.

From that point I was experiencing a whole host of symptoms, anxiety, depression, insomnia, fatigue, joint pain, mood swings, constipation, bloating, abdominal cramps, intense lower back pain, a tingling sensation in my head, eye twitches, brain fog, generally feeling like I was falling apart.

I visited my doctor's office many times, yet none of my visits left me with any answers. Conventional medical professionals seem to be devoid of any kind of basic intuition when it comes to health; every doctor I saw refused to acknowledge the fact that all of my problems had started after taking Accutane. I’m not sure if they were aware of the drug’s history, that it’s actually a chemotherapy drug, also formulated for the treatment of brain cancer.

From Severe Acne to Cancer

Accutane is the trade name for Isotretinoin, a Vitamin A derivative. It was first marketed as Accutane by Hoffmann-La Roche. It sold well for many years, but in 2009, Roche decided to remove Accutane from the US market after juries had awarded millions of dollars in damages to former Accutane users over inflammatory bowel disease claims. It then became generic, and is now marketed under many brand names worldwide. It’s strength warrants a place on the 'Chemocare' website.

I’m not sure exactly when it was, possibly 18 months after taking Accutane, I was taking a shower one morning, and felt a lump. This ‘lump’ was in a fairly awkward spot, and appeared on a day when I was already due to see my doctor, about my anxiety, fatigue, and insomnia. So, I walked into his office, told him about my four problems, and was told something I’ll never forget, “Tom, you’re not supposed to save things up, you should have booked a double appointment.” He then proceeded to patronize me, by asking the usual mental health health questions, and told me he thought I was suffering with depression, which was no surprise.

He wasn’t going to look at my fourth issue, then he changed his mind at the last minute. I jumped up onto the examination table whereupon he concluded that I had developed an abscess. He then proceeded to prescribe some strong antibiotics. If that didn’t do the trick, I’d have to have it cut out. This ‘abscess’ was, let’s just say, at the end of my digestive system.

My first and only thought was, ‘how the f*ck did that happen?’

By this point I was tearing my hair out, trying to find answers. Why were all these things happening? And why did no one have any answers? My relationships with friends, family, and particularly romantic partners were starting to be affected. The relationship I was in at this time ended as a result, which only made me feel worse. It’s hard to convince people you are unwell, when doctors aren’t able to give you a diagnosis, constantly dancing around the facts staring them in the face. When I looked in the mirror I didn’t recognize the person looking back at me. Why couldn’t they see what was happening?

The photo below gives an example of my decline, left, the way I looked immediately after the Accutane, and right, approximately two and a half years later….

At My Worst

In December of 2012, my health took another serious nose dive. During a weekend, a few weeks before Christmas, I invited a couple of DJ friends to come over from the neighbouring island of Jersey. I’ve been DJing here for around 16 years, and decided to bring some guys to come play alongside me. They arrived late morning, so we headed to a pub, to watch a football game, and have a couple of beers. I wasn’t right this day, woke up feeling groggy, head spinning, dealing with symptoms that are very hard to describe. Simply put, I didn’t feel right at all. This continued for days, so I went to see a doctor again. This time I chose to see a different doctor, who sent me for another blood test. Turned out my Thyroid Stimulating Hormone (TSH) was sky high, which indicated that my thyroid was under active. Upon hearing this I actually felt good, finally, I had a reason for why I’d been feeling so terrible. The doctor sent me away for a month, told me they’d test me again in four weeks time, and if the result was the same, I would have to go on thyroid medication for the rest of my life.

Now, let’s think about that for a second, take a look at the photo of my body in 2008 I was fit, strong, and healthy. I ate what I thought was a healthy diet, and was pretty happy with my life. How could I have deteriorated so much in the space of three years? To the point where I was dealing with health problems that are normally faced by people much later in life, or not at all.

I returned for the follow up blood test, which came back normal! The doctor was unable to give me a reason for this, which was incredibly frustrating, because by this point, I needed answers. This was my defining moment, when I realized that I had been going wrong my whole life. I had handed ownership of my health over to a third party….MY health was MY responsibility! So I did the unthinkable, I turned to ‘Dr Google’.

Quest For Knowledge

The first search I tried was, ‘foods that attack the thyroid’, and the resounding answer was ‘gluten’. I removed it from my diet and within three days it was like someone had turned the lights back on. This was only the start.

I demanded to be referred to a gastroenterologist, who completely disregarded my claims about Accutane, carried out a colonoscopy and endoscopy, took a biopsy, and found nothing. He offered me no follow ups, leaving me to find my own way in the dark, again.

I booked an appointment with a nutritionist, who arranged a stool test, to see what condition my gut flora was in. This was the turning point. The test showed that my levels of beneficial bacteria were good, but I wasn’t digesting fats well, and I was carrying two parasites. I did some research on the parasites, and opted to treat them conventionally.

Doctors where I live were reluctant to take these parasites seriously, so I sought the help of a UK doctor, who prescribed a powerful cocktail of three antibiotics. I was so blinkered at this point, still thinking that conventional medicines were the answer, so I took the drugs for two weeks, and the results were disastrous, I was passing blood, and my fatigue was off the scale.

I changed local doctor again, to a doctor who had a ‘special interest’ in Chronic Fatigue Syndrome, which was the only diagnosis I had received, along with IBS. She told me that my ‘microbiome' had been damaged, and that I needed to take probiotics to restore it.

‘Microbiome’ is the collective term given to the dense population of microbes that live in the gut. This microbial colony is essential to our existence, when they are harmed, every aspect of our health is affected, a fact I wished I had been aware of before my doctors had started me on medications in my late teens. Every time you take an antibiotic a number of these microbes will die, and some strains will never return. The general rule appears to be, the more diverse your gut flora is, the healthier you will be.

So, there I was, completely screwed, I didn’t know what to do. The third girlfriend I’d had during my illness told me, living with me was, “like living with a sick old man”. Then she left me to fight my battle alone, which was probably best for both of us.

At this point I vowed to face my problem head on, and study everything. I began my working life as an aircraft technician, then moved on to working with security systems. I knew a lot about fixing things, but I’d never had to fix my body before. I began reading all about Accutane, gut health, nutrition, and listening to other people’s experiences of healing from long term illness. My progress was slow, and emotionally challenging, I faced many battles of opinions with friends, family members, colleagues, and doctors, but quickly realised that most people’s opinions on health matters were severely misinformed.

My doctor’s advice was, “when you’re not at work, do as little as possible”. This was very hard for me, but I tried to use that time wisely, to figure everything out. The more I studied, the more I realised how many lies have been propagated by mainstream entities, and I became aware of the power of diet modification, when treating chronic illness.

Although I was becoming more and more enlightened, I was still sick, and very isolated. Socially, I’d become that guy everyone avoids. People have a standard greeting when they meet, which is to ask, “how are you?” Yet when someone consistently answers, “not well actually”, that person is shunned pretty rapidly. Why did people behave like this? I asked myself, before realizing that it’s just human nature, we are programmed to avoid sickness, to prevent the spread of disease.

It would take thousands of words to tell the whole story of how I got to where I am now, so I will try to summarize.

The Road to Recovery

I discovered fairly early on that the diet I did best on was the paleo diet, a way of eating that excludes all foods that entered the human diet during the agricultural revolution. My reading list included books by David Perlmutter, Mark Sisson, John Durant, Natasha Campbell McBride, Martin Blaser, Gary Taubes, and Kelly Brogan. I also follow a whole host of functional doctors online, amazing individuals such as Mark Hyman and Chris Kresser. A number of the doctors I follow have something in common, they all found themselves with an illness, that conventional medicine offered no treatment for, so they had to go back to the drawing board.

After around six months, I decided to head to a clinic in the UK that offered ‘Fecal Microbiota Transplants’, which is exactly how it sounds. They specialize in taking bacteria from a healthy donor’s digestive system, and implanting it into the gut of a person with a digestive disorder, where an imbalanced gut flora plays a key role. I would end up returning twice, eventually doing 30 transplants! Unfortunately, they weren’t the ‘magic bullet’ I expected them to b