A colleague told me his brother has schizophrenia. He learned of
my story and asked me to write a few words for his brother to help him
understand how I treated myself, and perhaps give him encouragement to look
into his own illness. I’m sharing this as I believe it might be useful for anyone looking into their own mental illness.
Hi,
Here is a summary of my story of mental illness
and some thoughts on why I got sick, and the methods I applied to get well.
In
July 2011 I suffered a completely unexpected and rapid onset of psychiatric
problems while sat at my desk at work. I was subsequently diagnosed with
bipolar affective disorder type 1 with paranoid psychosis. Over the next 5 and
a half years I spent 6 months in psychiatric hospitals, took almost every
single brand of atypical antipsychotic, mood stabilisers, anxiolytics and
tranquillisers with little effect, and was told I needed electro-convulsive
therapy, which fortunately I refused. I didn’t hold down a stable job in all
that time and was forced to look for short term contracts between episodes of
illness. I was told I’d never be able to get well and that I’d never be the
same again. Even the voices in my head told me I was screwed (really)! I gained
5 stone and developed several metabolic and autoimmune diseases and reached a
point where I couldn’t function any more.
Incredibly
on 2nd November I was discharged by the psychiatric team that has
been treating me with a clean bill of health and I’m completely symptom free.
In fact, I’m in the best health of my life. They tell me they’ve never seen
anything like it. Perhaps the most incredible thing is that I cured myself.
On 1st
November there was a programme on BBC1 called Trust Me I’m A Doctor. It is
available to watch on iPlayer. At around 30 minutes in, a professor of
psychiatry Dr Belinda Lennox talks about a radical new treatment for mental
illness. This is the same professor I exchanged emails with a few months ago
for advice, as I believed my mental illness may have been caused by a problem
related to my diet and immune system, and she confirmed that in my case
anti-neuronal antibodies appear to be the root of my symptoms. This information
put me on the path of looking at my lifestyle and, more specifically my gut, as
this is where the immune system is. After much research I concluded that
certain foods were likely what was making me sick.
This
is what the professor sent to me:
“I have a high
level of suspicion that your mental illness was caused by an autoimmune
illness. I wonder whether you were tested for antineuronal antibodies at the
time, and whether you had other investigations such as an EEG and lumbar
puncture? The antibodies that I have found in people with acute psychosis are
against particular brain receptors, and there are sometimes clues from these
other investigations, even if the antibodies weren't tested at the time.
“Even so, I think
it would be worth testing for these antibodies even now, but with the caveat
that if the tests are negative it doesn't mean that they might not have caused
the problem 6 years ago. Quite often they are around to cause the illness, and
then are not detected later. The particular tests to request are for: anti
NMDAR and LGI antibodies. More details of how to request these are here:
sinapps.org.uk
“You may know that
there is quite a literature now on the association between anti-gliadin
antibodies and bipolar disorder, such as this paper. Interestingly they may be
different to the antibodies that show up in the test for coeliac disease. I
would put more weight on your observation and discovery as to what helps for
you than the blood test.”
In November
2016 I stopped all of my psychiatric medications, following a careful 10-week
taper of the dose. This gave me enough cognitive improvement to be able to read
again and I began my research into my illness. In January this year I found an
approach called the Autoimmune Protocol that looked like it might help so went
on a very strict diet, eliminating gluten, grains, dairy and sugar and a few
other foods, and made a dramatic and instant recovery, putting every single
psychiatric symptom into remission in just 10 days. I addressed numerous
vitamin deficiencies and now take a high dose of Vitamin D, Vitamin K2, Vitamin
B12, a multivitamin, magnesium, caprylic acid and probiotics. I also have
stabilised my thyroid and take prescription levothyroxine.
Over
the next few months I dropped 6 stone in weight, reversed my physical illnesses
and today I feel incredible. I continued to just get better and better,
reversing other symptoms that had been present my whole life and making a quite
astonishing transformation to my health. A psychologist has told me she has
seen my IQ rise by 30 points this year which is unheard of.
I am
both completely medication and symptom free and so long as I don’t eat grains I
will remain well for good. This is unbelievable news as I basically beat my
illness, something I was told was impossible. I never ever thought I’d get
well. This is what makes this so truly incredible.
There are no formal diagnostic criteria for what I have, nor
is there any clinical guidance for doctors to put into practice to treat this
illness. However, this hasn’t stopped me researching why I got sick and this is
a summary of what I believe happened to me:
My thinking is that I have anti neuronal antibodies,
possibly directed at NMDA receptors. It is also possible that I have antibodies
to tissue transglutaminase 6, similar to those directed at tissue
transglutaminase 2 in coeliac patients, but rather than attacking gut tissue
these antibodies attack nerve and brain tissues. The antibodies certainly appear
to be triggered by a sensitivity to something found in all grains, possibly the
prolamin (the storage protein known as gluten), and a genetic predisposition to
autoimmunity triggered these antibodies to attack my own tissues. When I say
all grain I mean corn, wheat, rice, oats, rye, barley etc, and not just the
typical grains associated with coeliac. In fact, this may not be related to
coeliac disease at all as no enteropathy was found when I had an endoscopy in
2011, although I do have some gastric issues. As Professor Lennox stated in her
email, it is possible to have an autoimmune reaction to gliadin (the gluten in
wheat) and not have gut damage. There is also a clinical recognition of an
autoimmune condition associated with gluten leading to both cerebellar ataxia
and psychosis and this closely fits my symptoms. This is likely a genetic
condition and appears that there have been incidents like mine found in many
generations of my family, some of whom unfortunate to have been living in less
enlightened times, were placed in psychiatric institutions for life.
In addition to this I also believe that nutrient
deficiencies, particularly B12, impaired the metabolism of neurotransmitters; a
poor regulation of blood glucose levels which led to both hypoperfusion (poor
circulation of oxygen in the blood) and neurological pain, including migraines
and calf pain; autoimmune thyroid damage that was accelerated by lithium
therapy; lipopolysaccharides (neurotoxins) released from a yeast overgrowth due
to a gut dysbiosis which interfered with hypothalamus function affecting
serotonin and TSH; chronic stress, adverse childhood experiences, inflammatory
cytokines from obesity, sleep deprivation, lack of exercise and a generally
unhealthy lifestyle, all created a perfect storm of factors that manifest in
the symptoms seen in my brain.
This is why I believe my lifestyle changes had such a
profound and dramatic effect. By treating my whole body and not my brain I was
able to halt and reverse my symptoms in a matter of days. By continuing to
control what I put in my body, removing what makes me sick and ensuring I get
optimal nutrition, by getting adequate my sleep and rest, ensuring I remain
active, and by confronting and dealing with stress factors through appropriate
psychological interventions, my psychiatrist believes I will remain well.
However, I will always be just a few poorly chosen meals away from making
myself sick again, something of which I remind myself every day.
As I said, the diet I follow is called the autoimmune
protocol. It’s a fundamental lifestyle change and requires 100% commitment.
It’s very restrictive at first but you do get to reintroduce some foods over
time.
I can recommend a book: Why Isn't My Brain Working?: A
Revolutionary Understanding of Brain Decline and Effective Strategies to
Recover Your Brain's Health by Dr. Datis Kharrazian http://amzn.eu/hUeChZ4.
The author is the person who came up with the diet that I’m following. There’s
some useful info about the diet here: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/
I’m happy to chat in more detail about what I’ve written
here. You are free to share this email with anyone you wish.
Best wishes,
Mike.
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