- Herald Sun
- March 06, 2015
Folinic acid has helped quell Elisa Black’s relentless anxiety. Picture: Bianca de Marchi
MY anxiety is a wild beast. It has destroyed relationships, clawed
at my insides until I was sick, left me cowering under blankets, plagued
me with panic attacks and tipped me into post-natal depression
following the birth of my first son.
But I was nervous from the beginning.As a toddler I saw a neighbour fall into a puddle and was — for years — plagued by thoughts of the “drowning hole”. I would dream of it, obsess about it; when I closed my eyes at night I would see it appearing suddenly and unexpectedly outside my house, engulfing my baby brother or unsuspecting parents. I could not be convinced that I was safe.
In primary school I was obsessed with leprosy. As ridiculous as it now sounds, I would lie awake, night after night after night, wondering if tomorrow would be my last day on earth as I disintegrated due to rapid-onset rotting.
As a teen, a phobia of vomiting — something that is far, far more common than you might think — meant I was too scared to eat around other people in case I threw it all back up in front of them.
And as a young adult, it manifested as panic attacks. I was convinced my body could not tolerate heat and even seeing someone sweating on television could tip me into a full-blown panic attack.
At 25, I had to move back home with my parents and didn’t leave my room for three months, convinced that I would die if I did.
For more than a decade, I have sought a cure.
In the past year Elisa’s anxiety has nudged towards depression.
I’ve doggedly practised yoga, meditated morning and night, and exercised feverishly to try to get rid of the adrenaline coursing through my veins.
I’ve sought solace in wine and avoided anxiety-inducing situations to the point of agoraphobia.
And for the past year my anxiety has edged ever closer to depression, as I berated myself for not being good enough to beat what so many seem to view as a personal failing, something I should be able to control if I just tried hard enough. Yet today my beast, finally, is a paper tiger, a tiny shadow in the corner of my heart. It wasn’t drugs, or therapy or deep-bloody-breathing that finally slayed it, though.
It was a vitamin.
While for years, decades, I was looking outside for the answer, it turns out that I should have been looking inside all along. Looking at my genes.
Because it turns out I have a the genetic mutation on one of my genes, one with the rather apt acronym MTHFR. The result is that my body has trouble processing B-group vitamins.
But here’s the thing: I am far from being alone. The genetic mutation also affects close to one in five people and could be responsible for everything from mood disorder and multiple miscarriages to strokes, cardiovascular disease, diabetes and other illnesses.
And the good news is that the potential treatment — folinic acid — is cheap, relatively easy to find, and side effect-free.
The distinction between folinic acid and the common dietary vitamin, B9 or folic acid, is an important one. Variations in the MTHFR gene mean I am unable to convert folic acid into a form my body can use — folinic acid — easily.
That, in turn, can lead to a Pandora’s box of health problems.
My Adelaide-based doctor Andrew Owen has a comforting medical mix of compassion and curiosity and has been listening to me bang on about my anxiety for more than 10 years.
I first saw him after 12 months of virtually constant panic attacks had stripped 10kg from my frame, caused relentless insomnia and had driven me home from a life overseas, having left a relationship in ruins and on the edge of a nervous breakdown.
He helped me tone down my more manic side with drugs and psych referrals but anxiety had never entirely left me, ready to rear its ugly head in times of stress or when the kids get sick and I suddenly think that weird rash is smallpox (modern eradication be damned), or in the small hours of the night when the tiniest thing can seem like the gravest catastrophe.
Six months ago he suggested I, along with many of his patients, be tested for an MTHFR variation.
Aware of research in the area for the past six or so years and the benefits that had been observed from taking folinic acid, Dr Owen conducted his own research before deciding to see if it could help others.
“Like any good doctor I tried it on myself first and quickly became aware of a substantial rise in my energy levels,’’ he says.
“After a few of my patients responded dramatically I thought this could be something to use on those who didn’t respond to SSRIs (a type of anti-depressant).”
But, like so much in medicine, the effects of the treatment aren’t utterly predictable.
“Some people with a double mutation don’t necessarily respond dramatically to folinic acid, which is why I use a methyl B12 in combination as there might turn out to be other pathway disorders,’’ he says. “I’m treating at least a couple of hundred patients with this now.”
And those patients don’t only include those with anxiety or depression. The doctor has seen improvements in people with fibromyalgia, migraine, and hypertension; kids with ADHD and autism.
Elisa had been searching for a cure for anxiety for 10 years, but was a nervous toddler. Picture: Bianca De Marchi
The link between MTHFR mutations, mood disorders and neurodevelopmental problems is not new information to scientists, even though adoption of testing by the broader medical community appears to be a rarity. Studies have shown that homocysteine levels can predict the length someone might suffer from post-traumatic stress disorder, that B vitamins have been observed to relieve premenstrual anxiety, and that MTHFR variations are associated with major depression, bipolar disorder, and schizophrenia.
A study in Northern Ireland found a MTHFR variation was associated with an increased risk of depressive episodes.
While a 2011 study reported a possible link between a different MTHFR variation and ADHD.
A recent study in Arkansas, published in Molecular Psychiatry, found that a group of children with autism who were treated with folinic acid showed significant improvements in verbal communication, receptive and expressive language, attention and stereotypical behaviour. About one-third of treated children demonstrated moderate to much improvement.
Studies that definitively prove a link with anxiety are thinner on the ground.
Trying to find a comprehensive study that looks at the possible link between MTHFR variations and anxiety is tricky, even though its link to other mood disorders is extensively researched.
And if you Google “MTHFR and anxiety” you will find more than 129,000 pages devoted to it — most created by people looking for answers.
That my anxiety has a genetic link is, on reflection, no great surprise to me. My maternal grandfather had what was then known as a “nervous breakdown” and was prone to bouts of melancholy.
My maternal grandmother would suffer from constant nervous attacks that would leave her feeling “oomi”, forcing her to rely heavily on Valium in a time when mental health was neither discussed nor publicly acknowledged.
My mum, who has had her own battles with a kind of social phobia, remembers her own health being constantly checked by her mother.
Walking past she would raise a wrist to my mum’s forehead and at the first hint of illness Mum would be packed off to bed and checked upon compulsively. I have recognised this same behaviour in my treatment of my sons. A temperature can be enough to send me off into wild paroxysms of hysteria, imagining every possible catastrophic outcome befalling my bewildered, if snotty, child.
Truth be told, Mum’s side of the family is littered with us crazy types, all of us muddling along as best we can, desperately trying to look normal while we indulge in the various routines, compulsions and obsessions that help us feel as if we have some kind of control over our anxiety or depression.
If only I’d known that something as simple — and free of side-effects — as B vitamins was a credible option before I spent all my money on enough hand sanitiser to keep all the world’s bacteria at bay.
Dietitian and nutritionist Melissa Adamski is the owner of Nutted Out Nutrition and a nationally recognised expert in the emerging field of nutritional genomics. Broadly, nutrigenetics looks at how human genetic variation results in distinct nutritional requirements, and how diet and nutrition modulate the expression of genes.
Adamski believes a reluctance on the part of many GPs to invest more time in nutrigenetic testing is because there are no best-practice guidelines.
“There is lots of information coming out on genetic variations and how that affects our biochemistry and health,” she says. “However, there is less information on how to address that with nutrition and other health recommendations. A lot of practitioners are quite hesitant in using nutrigenetic tests as they are less clear in what we recommend to the patient.
“They are waiting for more robust evidence; there is no ‘one size fits all’ solution.”
While a passionate advocate of the future of personalised medicine and allied health practice — in which nutritional genomics will play an important part — Adamski also encourages people to ensure they are informed before they embark on any genetic testing.
“Be very clear on what you want to know through the test. Speak to a genetic counsellor or geneticist if you have questions on serious medical conditions and genetics,’’ she says.
“Ask lots of questions of your practitioner — how will a test benefit you or change your life?
“But this is an exciting area and shouldn’t be dismissed. We know so much already. It’s here, the public needs to be aware.”
Elisa has taken medication, naturopaths, hypnosis and seen psychologists along her journey.
Depression is also a very big component, she adds, explaining that folate is important to the processes that produce key brain chemicals like serotonin, dopamine and melatonin.
“Most MTHFR patients with anxiety also have pyrroluria — which causes a decrease in B6 and zinc in the body. When this is addressed and B12 and folate levels are restored, anxiety will be decreased by about 80 per cent within three weeks or so.
“This has been life-changing for me, too. The genetic route is the key to good health. We can’t do anything about the genes we have but we can change the way they act and the results I’ve seen are nothing short of phenomenal.
“When you view your family history and your genes, you know that you will likely head down the same path unless you change the way the genes behave. This is powerful nutritional medicine.”
So, with this in mind, what does the future hold for those with dodgy MTHFR?
After all of these studies, its implication in a myriad of devastating diseases and conditions, are we actually any closer to being able to use this knowledge to affect measurable and positive change?
Can it lead to cures? Can we stop multiple miscarriages? Help prevent stroke or heart attack? Bring a child with autism back to his or her parents?
The answer is maybe ... or probably.
Molecular geneticist Professor Lyn Griffiths, the executive director of the Institute of Health and Biomedical Innovation at Queensland University of Technology, is in late-stage research into the link between MTHFR mutations and migraine.
Migraine with aura is usually visual but can be also be a sensory, motor or verbal disturbance.
Prof Griffiths is hoping results from Phase 3 studies will replicate what has been found in the previous two — that the C677T mutation occurs more often in people with migraine and migraine with aura and that a combination of B group vitamins can significantly reduce frequency, severity and pain.
“We expect to see a more significant response in people with a double mutation but also a response in those with a single mutation by treating them with a combination of folate, B6 and B12,’’ she says.
“You would need to eat buckets of spinach to get the same effect.”
If Phase 3 trials bear out earlier studies, Prof Griffiths is hoping this will translate into a treatment that could potentially be available within 12 months.
The reduction of my own migraines has been a happy side effect of treating my anxiety with folinic acid and B12.
I am one of those unlucky enough to have migraine with aura — my most notable attack occurred when I was working behind the counter at Wendy’s and had to endure an hour of desperation as the after-work crowd demanded sundaes with smarties and all I could see was a bunch of flashing squiggly lines while I tried not to vomit all over the counter.
Since starting folinic acid and B12 six months ago, I have had no migraines. That might not be scientific evidence but it’s good enough for me.
I can’t change my genes but I’m willing to explore emerging fields that might offer a way for me to live with them.
It’s not a cure. I still have my moments and suspect my anxiety is not only caused by a MTHFR mutation but a combination of personality, learned behaviours, an obsession with medical reality TV shows and an incorrigible tendency towards fantastical thinking.
I can still experience anxiety. I still sometimes obsess about whether my kids have some deadly tropical disease. But my everyday life is no longer ruled by that awful creeping sensation that something terrible is about to happen.
In the words of Popeye — who must have had some kind of MTHFR mutation to explain eating all that vitamin B-rich spinach — “I am what I am.”
But I do like this new version a whole lot more.
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