I’m delighted to host another guest post, this time from Brandon in Australia. He had very similar burning symptoms, like me, with no visible sign.
My name is Brandon Green. I am 34, male and from Brisbane, Queensland, Australia. I was very fortunate in finding Anna’s website right when I needed to in late 2021. For months my face was beginning to burn more and more after going out for a drive, and when heading into town for work. It was driving me nuts trying to work out what was going on. I reckon I must have bugged the doctors for three blood tests checking for Lupus in the space of 12 months. Every time, my inflammation markers and Lupus tests would come back negative. Incredibly perfect, in fact.
What was interesting was that I was also put on antibiotics (Erythromycin) during this time, because of a boil on my scalp that developed as a result of a skin doctor cutting out a cyst. In hindsight, and after coming off the Erythromycin, it was the antibiotics that exacerbated my sensitivity to light, when it all became as serious as it ever did, to the point where the TV, my computer and even my mobile phone felt like flame throwers on my face!
It all came to a head one day when I was at the shops, being uncharacteristically burnt by light through the shopping mall’s sky-light that would never normally burn me.
After having googled my symptoms for months I somehow had this sense I should search, ‘Girl allergic to light’. I was hoping for a story just like I found – Anna’s.
I could not believe what I was reading. I could relate to nearly everything Anna had ever documented except for the ‘living in the dark’ part – sounded scary. Also, the ‘being burnt by artificial light’ was unrelatable as well. I got in contact with Anna and we agreed to a phone call. I had so many questions for her. The phone call was scheduled in for a few days’ time. By the time we had the phone call, I too was living in the dark! At this stage, I was eagerly waiting for the phone to call. Lyndsey and I chatted for a good while. We shared experiences and swapped stories.
One odd thing that we both had in common was the fact that we both felt like we retained warmth and heat for a few hours after an encounter with light – similar to a microwaveable heat pack. Weird stuff.
During the phone call Anna talked about her experiences with antihistamine tablets and I decided to see if they would help me. I scrounged around my medical drawer and found a few Telfast pills (60mg Fexofenadine). I reckon I broke one into quarters, took a quarter, hoping it wouldn’t make things worse.
Within about 3 minutes I started having a migraine, and my ears began to ring. I don’t ever randomly get tinnitus – something was happening.
Within a further 10 minutes from the migraine onset, I could now handle being in front of my tiny phone, and even the T.V.
Wow. An antihistamine cured me? I have Mast Cell Activation Syndrome too?
The next morning I woke up and took another quarter of a 60mg tablet (What’s that – like 15mg? They make these in 180s! No idea how so little was so effective.)
I took myself out for a celebration lunch. It was quite an experience, after being locked up for nearly 5 days, living in the pitch-dark!
I have since gotten blood tests for Tryptase & DAO – but both have come back negative for any issue.
I still feel burning when I’m out in the sun for long periods at a time. I also feel the Fexofenadine being less effective than it was initially. I have never had the migraine experience with it again either. I continue in my search to find out what really is going on with me, and if I have any news will keep Anna updated.
Can you get a disease before it actually exists? Turns out you can! I first became ill in 2005 and ended up completely in the dark in 2006. For the next eight years I tried all sorts of things in the hope of finding a cure. Sometimes I managed to get well enough to go out for walks at dusk and dawn, but sooner or later I always had another relapse. The histamine intolerance approach I’ve described elsewhere on this blog proved the turning point for me and in 2016 I had improved enough to go back to the dermatology clinic in London which I’d last attended in 2006. There I had tests for a group of conditions known as mast cell disorders, but the tests came back negative, and I didn’t pursue this further.
Although I was much better than I had been, some areas of my skin were still excruciatingly sensitive to light. Also, my skin had become very sensitive in other ways, reacting to friction from many kinds of clothing, and to various forms of repetitive movement and exertion. So I was vulnerable to relapses from accidental exposures, or slight miscalculations regarding the amount of movement I could do.
In summer 2018, following energetic gardening under blazing sun (yes, I know – hindsight is a wonderful thing!), I had a very bad relapse, and was back in the dark for large parts of each day. Previously, I’d been contacted by a lady in California who had listened to my book while she was also living in the dark. After tracking down my website she’d started following the histamine intolerance approach, and had got well enough to find a specialist who had diagnosed and then treated her – for a condition called Mast Cell Activation Syndrome. (Read her story at ‘Another Girl Out Of the Dark’.) I became extremely motivated to research mast cell disorders properly. Here’s what I found out:
Mast cells are a vital part of everybody’s immune system. When they detect an injury or an intruder such as bacteria, they release various specialist types of chemical known as mediators to deal with the problem. One of the most important of these mediators is histamine. Some mast cell disorders such as mastocytosis involve an abnormal proliferation of mast cells in the body. However Mast Cell Activation Syndrome (MCAS), a new disease identified in 2007, does not involve the presence of an excessive number of mast cells. Rather, sufferers have a normal number of mast cells, but the cells themselves react inappropriately and excessively, in a way that goes well beyond allergy, releasing their chemical mediators in response to normal everyday triggers. These unnecessary and powerful chemicals wreak havoc in the body, causing pain, swelling, burning, rashes and many other problems. This condition can affect all systems of the body, so sufferers exhibit a very wide and diverse range of symptoms. The range of triggers are many and highly individual – and can vary in one person across time. Triggers include – but are not limited to – foods, chemicals, smells, heat, cold, exercise… and light.
I also came across the astonishing sentence: “MCAS usually presents with normal tryptase levels; instead, histamine, mast cell-specific prostaglandins and other mediators all need to be assessed.” In fact, while a negative tryptase test rules out mastocytosis, it does not rule out MCAS, which is much harder to diagnose There are a range of other tests, but at the time they were not available on the NHS.
I became determined to see a mast cell specialist, and these are rare beasts in the UK. When I finally ended up sitting opposite a (sadly, private) clinical immunologist who was an expert in this area, and started hesitantly to describe my impossible, incredible history (I mean who lives in the dark for years and then gets a reaction from grating cheese?), his attitude was blissfully refreshing. Basically, he said, “Look, stop worrying about how weird your symptoms are. I’ve seen MCAS causing all sorts of seriously weird symptoms. Let’s see what comes up in the tests.” So off I went to get tested.
MCAS was added to the International Classification for Diseases in 2017. The ICD specifies four diagnostic criteria:. 1 – a detailed history of symptoms 2 – the exclusion of possible alternatives 3 – evidence of a chemical mediator 4 – response to treatment. So the first set of tests, which my GP ordered, were to rule out every other possible cause. I’d had many of these during my years of searching for a cure, but I had them all over again. Nothing showed up apart from vitamin D deficiency (surprise). Then, I had to go privately to The Doctors Laboratory in London, to have other tests looking for evidence of a chemical mediator. This evidence is sought from many different angles, because the chemical mediators which mast cells release spike very quickly and then disappear, while their painful and disabling effects on the body last much longer.
The first batch of tests were negative for MCAS, but positive for histamine intolerance. I have a measurably low level of Diamine Oxidase (DAO), which is an enzyme that degrades histamine. And this low level was measurable even on my low histamine diet – the advice is to come off a low histamine diet and eat normally for two weeks prior to the test, but I explained to my consultant that if I did that, I would most likely be unable to attend the lab at all due to a resurgence of my light sensitivity. So my levels must have been low! At last, the reason for my amazing improvement on a low-histamine diet and histamine-reducing supplements was clear.
Then I had the next batch of tests – and there it was. A prostaglandin F2 alpha to creatinine ratio which was above the normal range.
I later found out that because of the evanescent nature of the chemical mediators in the bloodstream, even with the full range of tests it can be hard to catch them in the act. Some people receive a diagnosis of ‘suspected’ or ‘presumed ‘ MCAS based on the other three criteria being met, because their chemical mediators keep slipping through the testing net.
Since receiving my MCAS diagnosis, on the advice of my consultant, I’ve continued with my low histamine diet and supplements, which are also recommended for people with MCAS. I’ve started taking DAOsin, which directly supplements DAO, and gradually added in Clarityn, an antihistamine which reduces the receptivity of my other cells to the chemical mediators which my mast cells are producing in such exciting quantities. I still have ups and downs, but things are definitely improving.
It’s only the start of a journey. There are other medications to explore and experiment with to help manage the condition, but there is currently no cure. People’s symptoms tend to wax and wane, and alter over time; new symptoms and triggers can develop. Compared to the UK, diagnosis and treatment are much better established in Germany and the USA. However knowledge and understanding of MCAS are now developing in some pockets of the NHS. A charity, Mast Cell Action (www.mastcellaction.org), was set up in 2015 to promote awareness and support sufferers, many of whom have spent decades going from specialist to specialist trying to find out what is wrong.
When I wrote my book, it was an unusual illness memoir because it did not have the standard happy ending. At the point of publication in 2015 I was still suffering extreme, incredible and unexplained symptoms, was mostly housebound and frequently in my blacked-out room. Because there was no way I could do the usual kind of book publicity, I stayed in my house and journalists came to interview me in the living room, with the curtains more or less open depending on how well I was at the time. Inevitably, they all asked the same question: “So, have you considered the possibility that your symptoms have a psychological cause?”
I would sigh inwardly and say something along these lines: “Obviously I have considered every possible route out of the dark. However I’ve got four reasons why I think my symptoms have a physical cause. First, my dermatologist, who’s continued to support me over all these years, has never suggested that my symptoms are psychological. In fact he’s been very explicit that there are many dermatological conditions which are currently not well understood. Second, I’ve tried many different approaches over the years, including mind-body techniques. The mind-body techniques have never helped, whereas certain supplements and dietary approaches definitely have, including beta-carotene, which is prescribed on the NHS for various light sensitivity conditions. Third, here is a scientific paper which describes a case very similar to mine in Sweden (and I could now add: since publishing the book I’ve been contacted by people in similar situations all over the world – see my post Sadly Not Unique). Fourth, medical knowledge is still progressing. Symptoms which are not fully understood in the current state of knowledge may nonetheless be genuine physical symptoms. To say either your symptoms can be explained in the current state of knowledge or they must be psychological is a false dichotomy which misunderstands how medical advances happen.”
Well, it turns out I was absolutely right!
It hasn’t been comfortable, being on the cutting edge. But now, in 2020, finally the world’s caught up with me. I’m so grateful to the doctors and researchers who worked to identify and understand MCAS during all those years that I was in the dark. I’ve got an official diagnosis at last, underpinned by measurable biochemical abnormalities. I’ve got a clear direction for the future, and the hope that I can continue to improve.
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.
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.
Various 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.
I’ve just been on holiday. In our caravan. In the part of Hampshire where the South Downs is just beginning to roll. In a week of crazy totally unseasonal September heat (30° on some of the days). Under glorious blue skies and strong sun.
We saw the majestic pines on Lepe beach, the arboretum and herbaceous borders at Exbury, strolled round the property-lust-inducing village of Chawton and visited the museum in Jane Austen’s house. We went on a steam train on the Watercress line from Alton to Alresford, had fish and chips in a pub, watched ducks float serenely on the beautifully clear chalk stream.
I wore a long-sleeved jacket and a below-the-knee skirt and a large-brimmed hat and put my UV-protective but nonetheless excitingly lace-trimmed parasol up when the sun was strong and direct. But I had sandals on my feet, and no additional layers.
2010 was the last year I went on holiday. During one of my better periods, we visited the same caravan site, a small square field bordered by tall trees. I knew the sunrise and sunset times by heart; we had a run of early starts and evening strolls, and for the rest of the time I stayed in the van and Pete went off on his own.
This time we dozed luxuriously through the dawn, watched dusk from the caravan windows and went on day trips like normal people.
At last I’m seeing the world in its true colours. Someone has taken away my box of subtle pastels and given me a primary school paint set.
Red orange yellow green blue purple
Rowan dahlia sunflower grass sky blackberry
Wham! Kapow! I’m still reeling.
Hooray for low-histamine diets, histamine-reducing probiotics, and dna-test-targeted supplements.
Hooray for my wonderful J, who gave me back every last leaf.