Where do you live?
How old are you?
What percentage recovered are you?
What was your diagnosis and what treatments did you try before Fecal Microbiota Transplant (FMT)?
I had been on regular courses of anti-biotics throughout my life. First, as a child for throat and ear infections and later, as an adult for UTIs and traveler’s diarrhea. Although I had been functional as an adult, I had never been 100% well, experiencing recurrent UTIs, yeast infections, gluten intolerance and fibromyalgia. In my mid ‘40s escalated antibiotic use sent my physical and mental wellbeing snowballing downhill.
In the years leading up to 2009 I started experiencing anxiety and depression, which I attributed to a succession of stressful life events. In 2009 this deteriorated further and I began experiencing debilitating migraines, derealization and severe food intolerances. Relaxation made the migraines worse and I would spend weekends with my head in the toilet or collapsed on the bathroom floor vomiting from the pain of a throbbing jackhammer through my head. It would take 3 days to recover and then it would start over again the following weekend. When the migraines started to occur each weekday evening I knew my job was at risk.
Depression and anxiety are terms used liberally these days, but it is worth stopping to consider what it is like to live with them. I lost my emotional resilience and everything became a big deal. I was thin-skinned, irritable and perpetually fighting back fear and grief, struggling to keep my head above water in a sea of doom. The only emotions I could feel were sadness and anger. When I noticed something that would ordinarily make me happy, I urged my brain to react with happy feelings, but it would not respond. I developed OCD over ridiculous things, extreme sensitivity to cold and craved sunlight. Then there was the derealization, which was truly bizarre. It was like engaging with the world through a tunnel or frosted glass. My perception of the world was one dimensional, as if everything was on television. All my interactions with people were difficult. I could no longer feel emotional connection with others as they felt distant and far away.
Doctors could not provide a diagnosis for the migraines or gut issues other than to tell me it was stress and prescribe migraine medication and anti-depressants, neither of which worked. The only good thing about the illness was that my brain was in overdrive and would not slow down. This kept me searching for a solution. I discovered on my own that an anti-histamine (promethazine) controlled the migraines within 30 minutes. Later a blood test would reveal extremely high histamine levels. While histamine is usually associated with allergies it’s also a neurotransmitter. Clearly excessive histamine was messing with my brain.
I suspected the problem was gut related as my gut and mood had both deteriorated badly following the escalated antibiotic use of the preceding 3 years. To my great surprise I felt 90% better after a pre-colonoscopy purge emptied my gut. Indeed I felt better every time I emptied my gut. I did not have diarrhea except for the increasing food intolerances, but it was clear that something was going on as my stool was fermenting and smelled sour like yoghurt or wine. A naturopath confirmed my hunch. “I don’t know what is happening in your head” she said, “but if you get to the bottom of your gut problems, I think you will have your answer”. I found a mind-gut psychologist who echoed this view.
The mind-gut psychologist recommended pulsed antibiotic/probiotic therapy. The antibiotics helped, but the probiotics made me worse. By late 2010 I reached a crisis point. The anti-histamine stopped working and the anxiety, depression, derealization, brain-fog and migraines were debilitating. I developed a list of weird physical complaints, like hundreds of bleeding paper cuts on my hands, which I successfully treated with Vitamin K after reading that this vitamin was produced by gut microbiota.
Fecal diversity tests showed microbial dysbiosis,a near mono-culture of streptococcus in my gut and “undetectable” Ecoli, Bifido or Lactobacillus. Blood tests showed raised TNF (an inflammatory marker) and extremely high histamine levels. I discovered links between streptococcus overgrowth and mental health problems in children, in the form of PANDAS. With hindsight I believe that my gut was having a immune reaction to the microbial imbalance.
I felt like I was living an inexplicable nightmare. I longed not just for a cure, but for a diagnosis that would lend legitimacy to my suffering. Without a diagnosis my doctors, friends and family did not take my condition seriously. I was alone, frightened and desperate.
We grow up knowing that we might draw the short straw in the health lottery. We fear diseases like cancer and a long list of awful chronic illnesses for which there is at least a diagnosis, prognosis, specialist and a treatment plan. However no one prepares you for the triple suffering of undiagnosed invisible illness. Sick. Undiagnosed. Doubted. At a time when you most need support, your relationships crumble as your nearest and dearest choose not to give you the benefit of the doubt.
Faking being sick? I don’t think so. With hindsight, I deserve an Academy Award for faking being well. It took supreme self-control to fight through the toxic avalanche descending on me physically, but that was nothing compared to the demons I wrestled in my head. Sometimes I recall the harrowing blog post I wrote in 2011 about this battle, and marvel that I kept going. I knew I could keep fighting the physical symptoms of the illness but the terrifying mental symptoms left me in no doubt I would kill myself if I could not find a solution.
I vividly recall chopping vegetables one evening, with salty tears streaming down my cheeks as I contemplated faking my way through the next day. All of a sudden I accidentally stabbed myself with the knife. It was a deep cut that gushed blood, but instead of the usual anguish and pain, I was engulfed with euphoria as endorphins catapulted through my bloodstream. As I grabbed a tissue and pondered this unexpected and welcome relief, I realised this was why depressed people cut themselves. Far from being an indulgent form of attention seeking, it is a type of self-medication just like drugs and alcohol. Yet despite the high it induced, I was never tempted to do it again. God knows I spent every minute of my waking day cajoling my exhausted body to keep going. I was fiercely protective of it and there was no way I could deliberately hurt it, except as a final act of defeat. I believe it was this visceral sense of self protection that kept me safe and searching for a solution.
I was determined not to die without a fight. So I gave up on health practitioners and hit the internet. I felt like I been handed a jigsaw puzzle in a million pieces, without a picture on the box. With the help of a speedy, hyped brain I scoured the internet in search of a picture than would unite the pieces. In 2011 no one had heard of fecal microbiota transplant. I read about it in a few papers in PubMed and speculated that if it could cure C.diff it could probably repopulate my ravaged gut. When I discovered that the Centre for Digestive Diseases, world leaders in FMT were located in Australia, I could not believe my luck. This was my only chance to restore my gut microbiome and stop the histamine reaction in my gut. I borrowed money on my mortgage and booked a flight to Sydney.
When did you have your FMT treatment?
In 2011 I received a series of FMTs at the CDD in Sydney Australia to which I responded well, and then regressed. As the brain-fog cleared I started to feel serotonin coursing through my brain and was convinced that I was on the right track, I continued FMT at home with a donor.
How long did it take to work?
It took 4-6 months to work. I believe it would have worked a lot quicker had my thyroid problem been diagnosed first.
Were there other perpetuating factors in your illness or illnesses, or was your only issue a microbial imbalance?
It turned out I had a grocery list of health problems, and microbial dysbiosis was only one of them. Together these factors formed a vicious circle of misery that I have battled and largely resolved over the last few years. Slowly the jigsaw pieces came together and a big picture emerged. It’s a picture which many of you know well, a vicious cycle of dysbiosis, intestinal permeability, immune disruption and systemic chaos. One day it will have a label, but for now people like me live with the label of mental illness rather than getting the healthcare we need.
The key milestones in my recovery are as follows.
After suffering from fibromyalgia for 12 years, it improved dramatically in 2007 when I rectified a Vitamin D deficiency and started Vitamin B supplementation. This allowed me to return to a proper job which was essential to fund the massive financial expense of the health journey that was to follow. My fibromyalgia remains 70% improved today.
In 2011 FMT improved my histamine migraines, anxiety and derealization by around 90%. However it did not improve my food intolerances. By 2013 I could only eat four foods without feeling like I was being poisoned. I was painfully thin and could not tolerate protein at all. I tried low-dose-immunotherapy to settle the food intolerances, which cost a fortune and only made me worse. I hunted down the mast-cell stabilizer sodium chromoglycate which helped a little, then messed with my liver, as did Quercetin a natural mast cell stabilizer.
For 18 months I set the alarm clock for 2am each morning to take Vitamin B complex so that I could get out of bed five hours later. Once out of bed, I needed hydrocortisone and a coffee enema to get me off to work. Each day I would cajole myself to stay at work for one more hour, one more day, one more week. I am extremely fortunate that I am good at my job and not micro-managed so I could hide my dysfunction. Sometimes I would flee to the bathroom and silently weep. Slow heavy brain-fog caused stupid mistakes, forcing me to let go of my usual perfectionism and accept mere adequacy to survive. One night I tried to drive out of the multi-level carpark but was so tired and confused I did not know where I was. Many times I packed up the contents of my desk at the end of the day, feeling unable to return, then talked myself into coming back for one more day. Taking one day at a time got me through 3 years of fear and hell.
Twenty years earlier I had been diagnosed with Graves Disease, an autoimmune condition that causes an overactive thyroid gland. I had been given radioactive iodine to kill off the thyroid gland, which meant I would be on T4 thyroid supplementation for the rest of my life. (Two months after radioactive iodine treatment, I developed debilitating fibromyalgia, which the endocrinologist said was unrelated and accused me of being a charlatan wanting to avoid work). Now, 20 years later, a functional medicine doctor did a Reverse T3 test and discovered I was not converting my thyroid medication properly from T4 to T3. I was furious to discover that I was suffering from undiagnosed low thyroid despite having had regular thyroid function tests with a succession of doctors for 20 years. I discovered the Stop The Thyroid Madness website and learned I was not alone. I also learned that gut dysfunction is a precursor to autoimmune illnesses like Graves Disease, in those predisposed. Clearly the development of gluten intolerance in my ‘20s had been an early warning sign. This was a very complicated web I found myself entangled in.
My food tolerances starting improving within 2 weeks of my thyroid medication being changed to a combination of T3 & T4. I am now 99% free of food intolerances and my gut is 100% recovered.
My battle to stay at work despite these medical conditions had left me with adrenal fatigue (diagnosed in 2013 via a 24 hours saliva cortisol test). Faced with the choice of leaving work or taking hydrocortisone, I reluctantly took the hydrocortisone. It took two years to replenish my exhausted adrenal glands and wean myself off the HC with the assistance of bovine adrenal cortex. HC has a bad reputation, but when you need it – you need it.
Functional liver detox profiles revealed ongoing liver issues that still remain. Thankfully these are slowly improving, using naturopathic liver repair protocols. Coenzymated Vitamin B complex, Silymarin (milk thistle), Polyenylphosphatidylcholine, S-adenosylmethionine, Zinc & Magnesium have been great liver supports. It turned out I had yeast infections because there was too much sugar in my body. High dose Inositol (8000mg daily) has supported my liver to better metabolise sugars and reduce my insulin resistance. As a result the yeast infections have improved 90%.
According to a recent intestinal permeability test, my gut wall is now normal – great progress considering it was off-the-scale a few years ago. A cytokine test revealed that I still have an overactive immune system, no doubt due to the inflammatory cascade arising from the trauma of the last few years and the genetic disposition that disposed me to Graves Disease in the first place. I very rarely take pharmaceuticals, however on the rare occasion I have taken aspirin or anti-histamine they make a big difference to my liver symptoms suggesting that systemic inflammation is still a factor holding back full recovery.
To address the residual inflammation, I have taken on helminth (hookworm) therapy which cured my gluten intolerance within 12 months. I hope it will eventually also settle down the inflammation that is holding back full recovery of my liver and brain. I still struggle with minor depression, social anxiety and the occasional migraine, which I believe are due to this residual inflammation. However it is now all manageable. It has been of great interest to me to read that nowadays depression is thought to be an inflammatory illness. This makes sense from my experience.
Does your condition still need maintenance eg diet, supplements, medication etc to keep it in remission?
I am 70% recovered overall which means I am functional and can at least enjoy life, although I still have some limitations.
I still take supplements, about 20% of what I used to take. I have been highly disciplined in weaning myself off them, but until my liver fully recovers I need them. I follow The Perfect Health Diet which is a modified Paleo diet that allows some carbs. I am well enough to eat junk occasionally and survive it.
How and when did you first hear of FMT?
Google in 2011.
What factors did you take into account when deciding to do FMT?
I had no doubt that I was unable to continue living as I was. I knew that unbalanced gut microbiota was a large part of the problem and that I had exhausted all antibiotic / probiotic options. There was no question that FMT was the next step.
It comforted me that I was going to a reputable clinic that had been around for 15 years. Professor Thomas Borody had been involved in finding the drug combination to treat helicobacter, the bug that 2005 Nobel Prize Winner Barry Marshall had discovered was responsible for stomach ulcers. Clearly, these were no quacks.
What did your doctor/s say?
The two doctors I mentioned it to were against FMT or not even prepared to discuss it.
I have often wondered Where is Doctor House? I struggle to understand how doctors, seemingly intelligent people, can so readily believe that every patient whose condition defies diagnosis is a hypochondriac and a candidate for anti-depressants. I was disappointed to discover that most mainstream doctors lack curiosity, over-rate their knowledge and are reluctant to respond with a truthful “Sorry, I don’t know what’s wrong with you”. In their defence, they are trained that way and brainwashed by pharmaceutical companies, so it’s not really their fault. Nonetheless I believe medical history will view darkly this chapter of medicine that thinks it’s ok to prescribe antibiotics as a first rather than last resort treatment, and to dismiss patients whose gut problems defy diagnosis with a script for anti-depressants. Not to mention the incorrect testing and medication of so many thyroid patients.
I will be forever grateful to the doctor that tested my Reverse T3 levels and discovered I was not metabolising my thyroid medication properly. I am also very grateful to the Centre for Digestive Diseases who did my FMT and the two naturopaths who helped along the way. However many practitioners, both allopathic and naturopathic, either wasted my money or made a bad situation worse by recommending one-size-fits-all knee-jerk therapies rather than conducting a thorough investigative analysis through functional medicine laboratories. The bottom line is that my recovery has been mostly due to my own research and perseverance. There has been no magic bullet, just a long slow expensive exhausting process of trial and error. There is no doubt that without the internet I would not be here to tell this story.
What criteria did you use to choose a donor?
I wanted a healthy male donor. After ruling out a few potential donors, I approached a friend who is a healthy athletic type who never gets travelers’ diarrhea when travelling in Asia. His response was kind and sympathetic. After doing some research, he agreed to help. I will forever be grateful that he took the time to do the research and didn’t just write off my request as some kind of lunacy.
Unlike the previous donor I had tested, this donor passed all his blood and stool tests, including a fecal diversity test that confirmed a robust and balanced microbiome. While I am aware that fecal diversity tests are controversial and still have a long way to go, the fact that my test showed an extremely unbalanced microbiome and his test showed a highly diverse ‘normal’ microbiome, tells me that the test I used had some accuracy.
How did you approach your donor and what was that person’s response?
It was one of the most humiliating things I have ever had to do. But I was desperate and all the other people on my list were unsuitable. I guess the worst that could have happened is that he could have said “No” and decided I was crazy. I was fighting for my life, so the risk of a “No” paled in comparison to the embarrassment and humiliation.
What was your FMT experience like?
The fear was much worse than the process itself.
Do you have any funny stories from your FMT journey?
Oh I’ve had hideous spills and even a car crash as I’ve rushed fresh stool across town!
What was your darkest moment when you were ill?
When I realised I couldn’t go on living that way. I don’t fear death but I didn’t want to die from a mental illness. Cancer would have at least been a respectable way to go, suicide is not.
What sustained you throughout?
I have suffered from low self-esteem and self-criticism all my life. Chronic undiagnosed illness gifted me a self-belief that has totally surprised me. This lesson alone has been worth the loss of relationships and financial carnage of this illness. When I could not rely on the support of doctors, friends or family, I had to learn to be my own friend. I had to fight the doubt, dismissal, derision and disbelief of nearly everyone I knew. When you face losing absolutely everything, you discover what you’re made of. I now know that I am stronger than I think.
Online friendships with other people in a similar situation also helped sustain me. In fact I’ve made some good friends. Reaching out to others and founding thepowerofpoop.com made me feel I was not alone. If I could help one other person in the way I would like to have been helped, that made each miserable day a bit better.
I have also celebrated my recovery with my online friends. Sadly, the people in my real life have not taken my recovery any more seriously than my illness. When I mention that I am finally recovering after years of misery I am more often than not met with a dismissive “oh that’s nice”. So now I just keep quiet.
What do you most enjoy about your post-FMT life?
Not spending weekends with my head over the toilet vomiting from the pain of a jack hammer in my head.
A brain that works (more or less!)
Eating anything I want.
Not spending every cent I earn (and more) on my health.
Knowing who my friends are.
What advice do you have for others to deal with the fear and (perceived) risk about FMT, in the face of skepticism from treating doctors, friends and family?
Doctors don’t know everything. It is you who have to live with the consequences of your condition, not them. Listen to everyone, but follow your gut.
What advice do you have for someone trying to make a decision about FMT?
Do your research. Talk to people who have had good and bad experiences. Write a list of the potential pros and cons of FMT. It is not for everyone, and yes there are (rare) risks. But there are also risks in going on as you are.
Don’t be reckless, but be willing to take a risk. One thing that won’t move you forward is inertia. Ask yourself, how much you can bear going on living like this and how you will handle it if FMT doesn’t turn out as you hoped. Hope for the best, plan for the worst and you will be well equipped.
All my life I have heard that success is about taking a risk and being resilient in the face of failure. Those who succeed are often not the cleverest, fittest or most beautiful. They are those who pull themselves up off the floor over and over again, and refuse to quit. Elite athletes know what this means. Successful entrepreneurs know what this means. Inspiring social leaders who make history know what this means. Now I too know what is means. The people who win are those that don’t quit.
If you are feeling down and desperate, it is my heartfelt wish that you will find the courage to drag yourself up off the floor one more time, and continue your healing journey. You owe it to yourself not to go down without a fight.
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