Another Girl Out of the Dark!

I am delighted to publish this guest post from A. in the USA. She lived in total darkness too, and has found her way out.

My journey back into the light also started with a friend called J. I was at my lowest point in my health problems and the closest I have ever been to giving up hope, when my friend told me about a radio interview she’d heard with a woman named Anna Lyndsey, whose situation sounded awfully similar to mine.

My descent into darkness started when I was diagnosed with Lyme Disease in 2003. I took a 3-day course of the antibiotic Zithromax for a diagnostic test, and a week later was burned very badly on my face while riding in a car. That initial burn triggered my sensitivity to sunlight. Not knowing what I was in for, I nevertheless treated for Lyme disease for four years, using many different antibiotics. In 2007 I went off them, hoping my phototoxicity would go away once I stopped the drugs. Instead it persisted, and eventually became even worse, the worsening always triggered by light. At first only sunlight burned me, but in 2010, I had to take a few days of antibiotics and regular room lights started to burn. By the time I heard about Anna in late 2016, I was living completely in the dark, with blackout fabric over all my windows and my house so dark I couldn’t see my hand in front of my face. It would take me months to recover from an accidental flick of an untaped light switch. I used flashlights modified to be dimmer to navigate daily life, and had been completely housebound for seven years. When my family mentioned stories about someone who had recovered from an illness, I rolled my eyes and struggled to be polite. When I heard about Anna, however, I was interested. My husband, who had also experienced a milder case of phototoxicity from antibiotics, dutifully looked her up and discovered she had a blog where I could contact her. So I strapped on my several layers of dark face masks and went to my computer with the monitor covered by four layers of dark films. Using my few precious minutes of light, I looked up her book and took a sneak peek at the first page.

When I saw the first line, “It is extraordinarily difficult to black out a room,” and then went on to read about her contortions with blackout fabric, my interest deepened. Other accounts about photosensitivity typically sounded different from mine. They did not seem to describe the levels of darkness I required, but they also spoke of other symptoms like rashes and fatigue as a result of being exposed to light. I, on the other hand, only experienced the deep sunburn-like burning, and my fatigue did not seem linked with light.

I left a comment on Anna’s blog and bought her book. I wasn’t sure I wanted to read it. It was too close to home. The first few pages made me cry. But it was wonderful! Here was someone describing my experience, but so much more eloquently than I ever could have. We shared so much. I too consumed massive numbers of audiobooks. I too had attempted to knit blindly without success. I too had developed a love of words games to keep sane. Anna also responded to my plea for help.

She called me, and we chatted, her with her lovely British accent, and me feeling like a twangy American, and she put me in touch with her J. I had read Anna’s blog, so was already learning about a low-histamine diet and after contacting J began reading by flashlight about mast cell activation disorder (MCAD) in “Never Bet Against Occam,” by Dr. Lawrence B. Afrin. Mast cells are responsible for releasing histamine, and there is a spectrum of disorders in which they can become inappropriately activated. I had never heard of histamine intolerance or MCAD before, but once I was aware of them, I noticed here and there a mention of MCAD linked with Lyme. I had already done genetic testing and knew I had problems methylating, but when I tried supplements to support those pathways, they all exacerbated my other symptoms. This was generally true of my prior attempts to recover. I had grown so sensitive to pharmaceutical drugs and supplements, I was never able to pursue the treatments my doctors prescribed without getting worse. Nothing improved my light sensitivity. It felt like banging my head against a brick wall.

I started the low histamine diet and histamine-reducing probiotics. I also tried antihistamines and diamine oxidase, or DAO, an enzyme that breaks down food histamine, but in the beginning even a sprinkle of DAO caused a Herxheimer reaction. (If you come from the world of Lyme disease, you are familiar with Jarish-Herxheimer reactions, where you experience a worsening of symptoms due to the toxins created from die-off of the bacteria.) My husband happened upon a supplement called Neuroprotek that is a mast cell stabilizer (see reference below). Between the diet and probiotics and Neuroprotek, I was able to get back onto the computer regularly, and this opened up new avenues for me. I found a new doctor who began treating me for MCAD and diagnosed me with mold illness. His expertise is in patients who have become hyper-sensitized like me, and he has observed, along with other doctors, that Lyme and mold illness can trigger a “secondary” form of MCAD that is a bit different from what is described in Dr. Afrin’s book. He also started me on a neuroplasticity therapy to treat a maladaptation in the limbic portion of my brain due to the endo- and mycotoxins from Lyme and mold, and I have found it to be very helpful in my journey back into the light.

As for that journey, I started with ten seconds per day of exposure to a red light bulb. (Red light is the furthest from UV in the visible range of the electromagnetic spectrum, and thus the least likely to cause skin burning). I bought “party” light bulbs of different colors and with a dimmer switch worked my way up through the color spectrum. In December of 2017, I was very excited to have a string of Christmas lights. I screwed in more party bulbs and upped their wattage. I began to open my blacked-out window shutters a minute earlier every day. I cried from pure joy the first time I saw the sun again (while listening to The Cure). I hadn’t seen the sun in fourteen years. And I have had many other crying-from-happiness moments along the way.

Today, the lights are back on in my house, and I am blackout fabric-free. I’m able to go for sunset walks in the park, a little earlier each day. I have been eating out for dinner like mad and going to concerts, movies, and plays, and reconnecting with old friends. I can see my family again. I can see again. Like Anna, I experienced the mix of joy and wariness at seeing myself in the mirror for the first time in seven years. I have been caught several times by my neighbors dancing in front of my windows. I have also finally met my neighbors after living in my house for five years without ever having been seen. They probably suspected my husband of making me up! I think I will never tire of looking at the sky.

It is somewhat surreal to think back on myself reading Anna’s blog for the first time while all covered in darkness, and to be writing a guest post for her now, a year and half later with sunlight all around me. Words cannot express how grateful I am to her and the J’s…. I can say this, though—finding “Girl in the Dark” changed my life.

Resources I found helpful
For MCAD and histamine intolerance:
– “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity,” by Lawrence B. Afrin M.D.
– “What HIT me? Living with Histamine Intolerance: A guide to diagnosis and management of HIT – A patient’s point of view,” by Genny Masterman. (Recommended by Anna in earlier posts.)
– www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
– https://drruscio.com/mast-cell-activation-syndrome-clinician-researcher-dr-lawrence-afrin/
To read more about neuroprotek and MCAD, see
http://www.mastcellmaster.com/
www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/

For Lyme and Mold:
https://www.betterhealthguy.com (He has blogcasts you can listen to. Of note are “Mast Cell Activation Syndrome with Dr. Jill Carnihan, MD,” and “Mast Cell Master with Dr. T.C. Theoharides, PhD, MD.”)
http://www.neilnathanmd.com/events/ (He has radio show archives that you can listen to.)
http://lymemd.blogspot.com/2015/06/mast-cell-activation-disorder-mcad-new.html
– “Mold & Mycotoxins: Current Evaluation and Treatment 2016,” by Neil Nathan. (For a printable PDF version, contact the author.)

For Limbic Impairment:
https://retrainingthebrain.com/
– “Wired for Healing – Remapping the Brain to Recover from Chronic and Mysterious Illnesses,” by Annie Hopper.

For software that cuts down the amount of blue light on your computer monitor:
https://justgetflux.com/

Sadly Not Unique


A black heart is a person living in the dark

Since Girl in the Dark was published, I’ve had letters and emails from people all over the world.

Some are from people leading normal lives, who simply love the book – thank you.

Some are from people who’ve experienced chronic illness, who relate to the frustration, isolation, wild joy at tiny improvements, utter devastation at relapses, absurdity and guilt.

Some come from people with other light sensitivity conditions, less absolute than my own.

A few are from people who are living in the dark.

These dark contacts give me the strangest mix of sensations: an overwhelming sense of kinship and fellow feeling, the primal comfort of not having been alone; a strong desire to stick two fingers up at those who said I must be imagining it, because such extreme sensitivity could not exist; deep tearing sadness that others are having to live in my particular intimate hell.

There are different ways in, and, let us hope, different ways out. I am so lucky I finally found mine.

Send a thought to the others, now and then, as you wander through the world.

 

More about Food

pearVarious people have been asking about the low-histamine diet. Unfortunately, there’s a lot of contradictory information on the web –  I’ve seen the same foods on a “do not eat” list on one site and a “totally ok” list on others; googling can send you quietly mad.  So I thought I’d share some info, based on my own reading and experience.

NB: This blog is not a substitute for professional medical services. Consult a competent professional on health matters.

What is histamine?
     Histamine has many useful functions in the body.  It is released from mast cells as part of a normal immune system response.  When someone has an allergy, e.g. to pollen, it is released in response to a normally harmless substance, causing unpleasant symptoms – hence ‘anti-histamine’ pills.  Histamine also occurs in foods to varying degrees.  Some foods are naturally high in histamine, such as tomatoes.  Others are high because of the way they have been produced.  Ageing, preserving, smoking, fermenting, pickling and processing all increase the histamine content of food, so for example blue cheese, smoked fish, sauerkraut, alcohol and tinned food are all high.  Some foods, additives and medications aren’t high in themselves, but are “histamine liberators” (encourage the body to release histamine) and some are “enzyme blockers” – i.e. reduce the body’s normal capacity to get rid of histamine.
In most people, histamine gets rapidly broken down by enzymes: DAO (histamine in the gut) and MAO-b and HNMT (intra-cellular histamine).  But people with low activity in these enzymes can end up with an imbalance – too much accumulated histamine, and not enough capacity for metabolising it.
Too much histamine can cause various symptoms including headaches, diarrhoea, asthma, runny nose and arrhythmia, plus a whole range of skin symptoms.  Often these symptoms are attributed to food allergies or intolerances which then prove frustratingly hard to manage.  The really interesting thing in my case was that reducing histamine levels reduced my sensitivity to an entirely separate and specific trigger – i.e. light.  I’ve also become less sensitive to other things that used to make me ill, such as dust and certain foods.

Low-histamine diet
Unlike most diets, this one has two elements:
1 What foods to eat – the best list I found is on the Swiss Community of Interest for Histamine Intolerance site
2 How food should be prepared and stored – the best guide to this aspect is a little book called “What HIT me? Living with histamine intolerance” by Genny Masterman.  It’s really worth investing in.  It contains lots of accessible scientific background; plus key tips for managing the diet, including “Learn to cook” and “Your fridge/freezer is your friend!”  Because yes… when you can’t open a tin of beans, snack on a packet of crisps or get a ready meal out of the freezer, you really do have to get cooking…!
I still have flashbacks to my early months on an extremely strict version of the diet.  They seemed to consist mostly of standing amid perpetual clouds of water vapour in the gloom of a blind-screened kitchen as I boiled frozen sweetcorn and steamed frozen fish.
But it’s all been worth it.  And as I’ve got better, I’ve been able to allow myself more leeway.  I eat chocolate now and again.  I’ve even experimented with low-histamine wine, available from a company in Austria called Eller Finest Selections.  (There seems to be much more awareness of histamine intolerance in Germany, Austria and Switzerland compared to the Anglosphere.)
The wine tasted pretty much like normal wine.  I went pink in the face, waved my arms about and started talking very fast about politics.  So one concludes that the effects are pretty normal too.

 

 

“It’s all psychological…”

pugl_green shutterA girl and her mother, talking on the radio, stop me in my tracks.
The girl had visual problems when she was eight years old, but specialists found nothing wrong.  They diagnosed her with “psychological blindness” and sent her home, devastated, confused, convinced she was a liar and a bad person.
They found the brain tumour eventually.  By the time it was removed, she had lost most of her sight.

My consultant never told me my condition was psychological, and my partner and close family, who knew me, and saw the evidence at first hand, never doubted the physical reality of the extreme photosensitivity that had devastated my life.  But in the space between the two, I was constantly bumping up against the “it’s all psychological” attitude.  People with minimal knowledge of my situation – beyond that it was rare, terrible and continuing – felt entirely entitled to pass this judgement, this casual invalidation of my whole experience.

Via the telephone that became my lifeline, I got to know other people with chronic conditions.  The same thing had happened to all of us.

What’s going on here? Two strands of thinking, tangled up – I’ll call them the ‘strong’ and the ‘weak’ hypothesis.  I had my purest experience of the former when a Reiki healer came to my house.  After asking whether, when I went into the light, I felt “exposed… lots of eyes looking at you”, and whether I might subconsciously believe that my relationship only kept going because I was ill, she announced “Ah well – there’s always a benefit, isn’t there, even if we can’t see it.” – i.e. my blacked-out room and agonising burning skin were manufactured by me to gain some obscure psychic payoff.

And the same applies to all illness, everywhere, according to hard-core New Age bibles (bowel problems manifest a fear of letting go of the old, back pain indicates guilt…).   I have even heard it said that a woman aged 59 whose cancer became inoperable could not face retirement with her unpleasant husband, and thus took this way out.

This position seems to me to be a turning away from the tragic reality of life.  We are psyches embodied in the material world, liable to be knocked about by genetic susceptibility, environmental exposure, or simple chance; loving, loved, contented people, bursting with plans for the future, are cut off, every day.  The theory is also absurdly narrowly focussed historically and geographically – I have not yet seen a metaphorical theorisation of the Ebola virus, or bubonic plague.  It seems a necessary adjunct to the New Age theory that you can get whatever you want in life, and that therefore whatever you get (such as a massively frustrating chronic illness) must in some way be what you wanted.

For me, the following gets closer to the human condition, whether you believe in God or not:
“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

So much for the ‘strong’ hypothesis.

The ‘weak’ hypothesis divides illnesses into two categories.  High blood pressure, heart disease, cancer etc. are ‘respectable’ diseases with an underlying physical cause.  However, unusual conditions that people have not come across before, and illnesses for which doctors do not have direct treatment, especially those that go on and on, boringly, for years, without either killing you or getting cured, are in contrast thoroughly disreputable and must therefore be psychological in origin.  “Can’t the doctors do anything about it?” a visitor asked me incredulously, as we sat together in my black room.  Ah, there speaks one of the blessed, whose faith in the capabilities of human knowledge is as yet unbattered by experience.  The sea of what we know is vast; the ocean of the unknown vaster.  We could all use some humility in the face of the as yet untreatable or unexplained, rather than reaching so quickly to close the door and bar it with a psychological explanation.  As research progresses, conditions push their way through the barrier – Gulf War Syndrome, for example, dismissed for years as psychosomatic, until finally a distinctive abnormality was found.

Such ‘explanations’ frequently support the vested interest of an establishment unwilling to change entrenched policies or compensate those harmed.  In a more intimate sphere, the associates of a chronically ill person – who is often demanding in terms of sympathy and care – gain the pleasure of superior insight, a justification for withdrawal, the spurious comfort that ‘this could not happen to me.’

 

Café, with People

20131122-25nforgladeWe pick a dull morning in November 2015 for my first go at a café. Pete and I drive to the New Forest, to a wildlife park set among tall trees.  We arrive early, at 12pm, so there won’t be many people about, and we choose a table out of the direct glare of the fluorescent lights.

Pete goes to the counter to order our food. I have a baked potato with salad, and peppermint tea.  (Some things, I find, don’t change – those small metal flip-top teapots STILL pour water all over the table whenever you fill your cup).

The place fills up, and I stare and stare as I eat. I’m fascinated by people’s faces and smiles, their different sizes and shapes, their gestures and clothes.  I eagerly listen in on conversations in person and on phones. I even spot my first hipster beard, a phenomenon that, up til now, I have only read about in magazines.  It’s a fine example, black, silky and luxuriant, worn beneath large-framed spectacles in cherry red.

For so long I’ve had real people only in controlled doses, people I know, in ones or twos, very rarely more, and in my house. New companions joined me in the dark, as I listened endlessly to talking books, and for several intense hours I would follow their trials and tribulations, look on at significant moments of their lives.  But these were phantasmal beings, formed from the ectoplasm of words, edited, pruned, consistent, their very idiosyncrasies designed to facilitate the plot.

Real people are wild and weird and wonderful. They are hairy and bulging and scrawny and toned.  They discuss obscure matters with ferocious intensity but a maddening lack of specifics.  I feast on them as I eat my potato – I’ve been starved too long.

I still need to be prudent about the light, so we don’t hang around. After 20 minutes we get up to go – and I have the exquisite pleasure of discovering that not only did I not have to cook this meal, but I can leave the remains on the table, for somebody else to clear up.