Uninvisible

The Uninvisible project aims to put a face to invisible illness in order to show that we are real people and not just dry statistics and that, even though we appear to be fine on the outside, we’re fighting a never-ending battle.  Since one major challenge encountered by sufferers of invisible illnesses, in addition to the illness itself, is a lack of support from our communities, my hope is that awareness will lead to better understanding.

My plan is to share awareness-raising stories and scientific developments, as well as my own struggle with an over-active immune system. Since my own experience centers around rare disease, particularly eosinophilic and mast cell disorders and myaelgic encephalomitis (chronic fatigue syndrome), that are not well understood by most medical practitioners, I’ll also be detailing treatments I’ve tried and how they worked for me, in case that knowledge can be of use to anyone.

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Featured post

23&Me and uBiome

 

I was so excited to try 23&Me and uBiome, thinking they’d give me some new insight into what I needed to get things back on track. They warn you that they’re not intended to diagnose, but I was as discouraged by that as I am by “may contain nuts” on a bag of cookies. However, I found them both a bit disappointing.

23&Me offers ancestry information alone for a reduced price, but for the genetic data you need to purchase the full package. With DNA sequencing, you can look at as much of the genome as you want, but you’re looking at every gene in that sequence. Sequencing your entire genome would involve a massive amount of data, so 23&Me genotypes instead. That means they jump straight to the genes with the most common variants, but they aren’t looking at everything. Let’s say there are 18 genes known to be associated with illness X and they only check 5 of them. How do you know you’re getting an accurate picture? You can send your saliva to 23&Me and a couple other genotyping companies and one will say you’re at high risk, one will say moderate risk, and the other will say low risk, because each is genotyping different genes.

These services also only give you the raw data. You then have to pay a bit more for a health report from sites like Livewello and Promethease. Then you realize you still don’t have a clear oversight – you have to know which specific genes to look for! I found a list of mutations associated with histamine intolerance/ mast cell disorder and I’d say the only thing I got out of that was the realization that it didn’t necessarily have to be MTHFR or DAO deficiency, it could also be that both are only operating at half power.

There are a lot of other fascinating tidbits in there like how likely you are to have curly hair, earwax, develop addictions (including having a sweet tooth) or mood or attention disorders, your appearance, intelligence, personality, which really make you wonder how much of who you are is within your control. But then there are other bits that don’t match – like it says you don’t tolerate a certain drug, but you do and vice versa so then how much stock can you really put in predicted risk for developing certain diseases? You’ve also got to consider how stress, diet, exercise, and environment play into it all. It’s really impossible to say anything for sure.

Then, on top of all the genes you don’t get genotyped, there are tons of genes included that we don’t currently have any information on, because this is still fairly new and uncharted territory. You really need a geneticist to interpret the results for you and then they could test specifically for the genes they want to look at and do a more thorough analysis of the relevant sequences.

Lastly, some are concerned about the co-founder of 23&Me being married to the co-founder of Google and worried that the information could later be made available to employers or used for some other subversive purpose.

As for uBiome, I (and others) got their results months later than expected, someone mentioned that his doctor had sent them two identical samples and gotten different results, and (again) you can’t really do much with the results. I plan to continue sending samples in to see how things change over time, but there’s also no way of knowing for sure what causes certain changes.

So, overall I’d say you might as well save your money, if things are tight, even though it can be fun if you’ve got the funds to spare. I wanted to test for allergies and enzymes and, even though doctors told me the tests were highly inaccurate, it wasn’t until I’d tried them for myself that I accepted that they really weren’t accurate. Similarly, I just had to try this for myself and there was a certain thrill that came along with it, just like the one you get when buying new supplements to try, hoping this’ll finally be the one to turn it all around, but sadly I can’t say I recommend them as a fix.

 

 

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Vivo Barefoot

One day, I was barbecuing with friends and needed to grab something from the store. One guy offered to drive and, when he got out of the car, I realized he was barefoot. Of course, I asked why and he told me he was going to have to have his knees replaced, but that that wouldn’t have lasted him more than a decade, meaning he’d have had to have it done multiple times, and that it generally came with a number of other complications. So, in search of an alternative, he went to every specialist within 100km and finally found one who said, “just go barefoot.” And he did, whenever he could, and was fine. At half his age, I already had back, knee, and foot pain if I stood or sat too long and had to constantly change position.

Intrigued, I started looking into it. What I discovered is that curved toes are a deformity caused by wearing shoes; the toe of your shoe curves up slightly, throwing your balance off; most people in the first-world end up with the same joint problems I had by the time they’re 40 or 50, a problem that interestingly doesn’t seem to prevail in the third-world, where people are more likely to go barefoot; your feet need the sensory information they get from coming into contact with the ground so, the thicker the soles of your shoes, the harder you step in order to get that information, which creates more damaging shock for your joints to absorb; barefooting brings you into closer contact with nature, which can be soothing if you suffer from mental illness; studies show that shoes, especially heels and flip-flops can even be very dangerous, moreso than going barefoot; and it’s not your feet that stink, it’s the bacteria feeding on the sweat trapped in your shoes (that you probably almost never wash), so no shoes = no stink and your feet get washed every time you shower anyway. So basically, most, if not all, of the time your feet spend in shoes is because society tells you you need them; not because you actually do.

Very slowly, I started to venture out in my birthday soles. After a lifetime of shoes, my feet were very weak so I couldn’t initially go very far, but it didn’t take long to build up strength – and it felt so liberating!  Not only did my feet look and feel healthier, my records showed that they’d even changed slightly to adopt a more natural form. Over the past several summers, I’m proud to say my feet have seen the streets of several different countries, but, while there are some hard-core, year-round barefooters, part of my illness is a hyper-sensitivity to cold, so I don’t usually do anything less than 15°C.

After tasting freedom, normal shoes felt so constricting; it was like numbly, clunking around in a cast – I had no freedom of motion at all! That was when I first started paying attention to shoes. Generally, I’d just get whatever was cheapest and wear it until the soles wore through, which was usually after 6-12 months of daily wear and a good while of shoe-stink long before that. But then I discovered minimalist shoes. I’ve tried several brands and ended up falling in love with Vivo Barefoot from day one. I’ll admit, not every pair is perfect, but overall they make very high quality shoes that allow you as much flexibility and sensory perception as possible, while remaining protective and durable. I’ve been wearing Vivos for years now and they’re so comfortable, I haven’t worn any other shoe since.

It’s not directly connected to auto-immune disease/ rare illness, but if there’s one thing I’ve learned on this journey it’s that everything is interconnected and since I saw they were having a sale, I wanted to put the word out.

Check em out! https://goo.gl/fDxGiD

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Cannabis & CBD (Cannabidiol) Oil

While information about cromolyn was generally hard to come by, most of what I found on CBD was unfortunately biased by whoever was selling it. And as much as I love my chronic-illness/rare-disease-dedicated Facebook forums, I sadly can’t say the same about any of the CBD groups. Admins of all the groups I’ve joined seemed to be mainly focused on pushing their own products and, even when I voiced my desire for some sort of impartial overview that would allow newcomers to make their own informed decision about which brand they found best, I’d get messages from other members, claiming they agreed, and then trying to sell me on their brand! But here’s what I’ve managed to figure out..

Cannabis is a plant. Cannabis sativa, tends to grow tall with thin leaves and provide an energizing, mental high, while cannabis indica, typically grows short with broad leaves and leaves you with a calming, physical high. But, as with all rules, there are exceptions and with so many hybrid strains today, it’s hard to generalize.

There are over 100 compounds in cannabis, called cannabinoids, the most well-known being THC (tetrahydrocannabinol), the psychoactive one. Hemp is essentially just cannabis that only contains trace amounts of THC, allowing it to be used industrially.

CBD (Cannabidiol), another cannabinoid, is basically the yin to THC’s yang – typically one will dominate the other – and has become very popular as a cannabis extract. If extracted from hemp, it can be bought legally in most places and is overseen by government regulations, like any other dietary supplement. It also won’t get you high.

I tried two, 10ml bottles from two different companies, one 4% and one 10% CBD, both suspended in olive oil. Using a dropper and a mirror (to count the drops), I let it sit under my tongue for about a minute before swallowing so it could be absorbed directly into my bloodstream. It did helped with pain (which wasn’t really an issue at the time), but not so much with fatigue. I eventually took so much I felt like I was on a caffeine high and I started having headaches.

Realizing, I stood to benefit more from the whole plant and, because I couldn’t find any cannabis oil, I decided try it in herb form. A sativa-dominant strain should be most energizing, but sativas are also often high in THC, which isn’t ideal if you suffer from anxiety. But most importantly, I don’t smoking my cannabis. Heat is what turns THCa into the psychoactive THC. By eating my herb raw, I may miss out on certain benefit, but I do managed to feel a little more normal without getting high.

leafly.com is a great source of information on all things cannabis!

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Chemical Sensitivity & Scented Trains

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September 2016 I moved into a student residence. That was when I first noticed a hypersensitivity to smells. I could smell what was cooking in the kitchen from two floors up at the opposite end of the hall. Sometimes it was temptingly pleasant, but the ready-made, frozen microwaveable dinners and prepackaged snacks smelled awful. The synthetic deodorants, perfumes, and air fresheners sprayed in the hall or shared toilet made me cringe. But worst of all was the stench of the industrial-grade cleaning products!

For some reason I was reluctant to admit that I also suffered from chemical sensitivity on top of everything else, so although I wouldn’t hesitate to say that the hand soap, surface cleaner, and mop detergent smelled horrible, it took me awhile to be sure it was having an effect on health. A couple times it hit me as I walked into the kitchen after someone had mopped. Even though I never touched the stuff myself, the smell lingered in the air for hours and despite walking in feeling fine, I’d soon be glued to my bed for the rest of the day. A couple other times I was still asleep when they’d mop the toilet and stairs down the hall. The smell wafted into my room and took me out like a ninja! But I know I’m actually quite lucky, because many of you have to deal with full-blown anaphylaxis in response to the smallest odour. I know a lot of you also wear carbon filter masks, which is something that’s crossed my mind, but I’m not quite there yet.

Still, I wanted to ask your help. A friend contacted me the other day, because she recently discovered the metros in her city have now begun using synthetic air fresheners. (article here)

Here’s what she had to say:

The thought of being trapped on a metro train going between stops, with the only option of breathing air that is increasingly causing an anaphylactic reaction, sounds like a death sentence. This ableist frivolity renders a whole mode of transportation inaccessible (or if I hadn’t read this, downright dangerous) to me. Or you. Or others.

I wrote to WMATA/metro that I care more about accessibility for all passengers than a weird take on mango scent floating around on the green line and I also enlisted the help of other local chapters of activists, but I hoped to get your help amplifying my concern over this issue.

If you or anyone you know suffers from chemical sensitivity then you know how serious it can be. Please take a minute to voice your concern (here) for the safety of my friend and all others in the District of Columbia who may also be vulnerable.

Histamine-Free Wine & Raw Chocolate

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I mentioned my histamine journey began with wine. Well, what I discovered is that white wines, sweet wines, and cheap wines are all high in sulfite, which is added to stop it from spoiling; organic wines contain on average 25% less and some are even made free from added sulfite (not sulfite-free, because some of it is naturally-occuring). Histamine, on the other hand, is higher in red wines.

The good news is, in the German-speaking world, histamine-free wine, although rare, does exist. It doesn’t give you that nice warmth in your cheeks, but I also haven’t ever had any issues with it either. If you put it beside a standard wine you’ll even notice how much clearer the color is.

Cacao, like chia seeds, is packed full of goodness. Some things, like cannabis, need to be heated to release all that goodness, but cacao is one of many things best eaten raw, since heat will destroy many of it’s natural nutrients. If you’re as sensitive as I am, you may even feel that extra boost of energy that you just don’t get from the standard store-bought variety.

I did find a couple brands of raw chocolate at my local health food store, but once I discovered how easy making apple sauce is (literally just slice and steam), I decided chocolate might also be fun and cost-efficient. So I ordered 3 KGs worth of ingredients – cacao butter, raw cacao power, and raw cacao nibs.

Since the butter wasn’t raw anyway, I heated that directly until it had melted, then added the powder, nibs, some sea salt, and some raw, local honey – another something much more beneficial when consumed unheated – and stuck it in the freezer until it had hardened. Et voila!

Histamine Intolerance & Mast Cell Stabilizers

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There are numerous well-written blogs that explain quite nicely what HIT is. Facebook also comes equipped with this nifty little search feature. Yet you can see the same questions popping up about once a week. It’s usually something like “Can you guys tolerate [insert any given food/drink]?” And the answers tend to go along the lines of a) no, not at all. I react horribly b) I can handle a bit, maybe once per week, if my bucket isn’t already overflowing (the emptier the metaphorical bucket, the more histamine can stand to be put in), c) yes, I love it and have it every day, or d) only this one particular variety/brand.

This is because, even though there are countless, often conflicting lists and the Swiss Interest Group arguably provides the best (http://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf), everyone is different. (The German-speaking world somehow seems to be ahead in all things histamine, as my special histamine-free wine also comes from Austria.) And that’s one thing that I’ve really come to understand and that I can’t emphasize enough – we’re all individual people and react differently to different things. Just because you can tolerate, say, strawberries, which are known to be histamine liberators (they trigger the release of histamine already in your body), doesn’t necessarily get you off the hook. Alcohol is a known DAO-inhibitor that many have had to completely cut out, yet I can handle my liquor quite well. The goal is equal amounts of Histamine and other amines (yes, there are others) to DAO – having too little DAO also leaves more excess amines floating around, wreaking havoc.

At one point I ate eggs and just a few minutes later could barely keep my eyes open, but it was a nice, light snooze. Then I tried some salami (I used to be crazy about salami) and appeared to be fine. It wasn’t until 12 hours later that it hit me. I’d know I was going to have a reaction because I’d wake up in the middle of the night feeling hyperactive. Eventually I’d go back to sleep, but then it was a real fight against to wake up again and, once I finally did, it was all I could do to drag myself out of bed, which only happened if absolutely necessary, for the absolute minimum amount of time, and was an incredible struggle.

The interesting thing is that that insomnia was a regular part of my life until I went low histamine. Many will warn not to restrict yourself too much. Well, I had no desire to restrict myself at all, I was just hoping to find my triggers then add everything else back in and carry on with my life. But even though cutting out foods didn’t solve all my problems and I would crave and cheat left and right, it did help me gain some clarity over what my triggers were and give me unexpected relief from a lot of symptoms. I began sleeping through the night, my wrist stopped constantly throbbing, my elbow didn’t need regular popping, my toes no longer went numb on a cool afternoon, and I didn’t feel like I was going to freeze to death being out on a chilly night.

In my search for solutions, I tried aloe vera juice, holy basil, and stinging nettle supplements. I was looking for any natural anti-histamine/ anti-inflammatory/ anti-antioxidant – none of them worked for me, but that doesn’t mean they wouldn’t for you. Finally, I ended up taking Olive Leaf extract, Vitamin C, and L-glutamine. They all helped initially, but after awhile I realized they were no longer making any difference and stopped taking them.

But before all of this, there was one supplement that did make a difference, the one I couldn’t live without: Quercetin, a natural mast cell stabilizer. I started taking Quercetin years ago for allergies and in that time I never got a cold, my acne cleared up, I wasn’t constantly sniffling, my ears didn’t feel blocked and when I stopped for just a few days to make sure I was really getting my money’s worth or because I’d spaced on ordering more, I was miserable! The interesting thing about Quercetin is, if you look for the science, it’s not there. Web MD will tell you it’s pretty much useless, yet nearly everyone in the HIT groups (who can tolerate it, of course) is taking it. Wonder why..

The reason I began looking into other natural supplements was that Quercetin was obviously no longer enough and the pharmaceutical antihistamines I’d been prescribed left me with unbearable anxiety, same as antidepressants and hormonal contraceptives had for years. Eventually I learned that every one of the symptoms I’ve mentioned, including anxiety, is rooted in inflammation. The problem with antihistamines is that they only block specific histamine receptors. You take an H1-blocker for allergies and an H2-blocker for an upset stomach. When the H1 or H2 receptors have been blocked the histamine can’t enter that particular area, but it was already standing outside, knocking at the door so it just shrugs it’s shoulders and find someplace else to go, like over to H3 – the neurotransmitter. That’s where Benadryl, as a first-generation antihistamine, has the advantage – it crosses right through the blood-brain barrier and puts you straight to sleep, so no anxiety!

Several months after writing both pills off, I was trying a new therapy and had a flare up of H1 (sneezing, sniffling) and H2 (bloating, abdominal pain) symptoms so I gave those two second-generation anti-histamines, another try and they worked! (But they also inhibit DAO and your body will eventually start producing more histamine to compensate for what’s being blocked, so I never take them more than necessary). Once I got really sick and started to learn about HIT, I inevitably learned about mast cells too. Mast cells are the ones that release histamine when they degranulate (explode). The idea behind taking mast cell stabilizers like Quercetin is that they stop mast cells from degranulating, meaning no histamine is released to begin with – obviously a much better solution.

Another important thing about HIT is that there are different causes and you have to find the root of yours in order to treat it properly. The one doctor I found who was familiar with mastocytosis, prescribed me a phamaceutical-grade mast cell stabilizer. Similar to how most people in the HIT groups are on Quercetin, a lot of those in the mastocytosis groups are taking some form of cromoglicic acid, often referred to as Cromolyn or Gastrocrom, or something even more powerful, like ketotifen. The fact that I’d responded so well to Quercetin for so long was a good indicator that I had a mast cell problem, but my doctor hadn’t told me anything about Intercron (my French Gastrocrom) other than to start with 1 per day and increase by 1 vial a week for 4 weeks to avoid my body going on the offence and other sources of information were hard to come by. So when I tried it just 2 days in a row and both days noticed a significant increase in fatigue, I figured it wasn’t for me. Months later, once I’d stopped taking Quercetin and realized that giving the H1 and H2 blockers a second chance had worked, I opted to give my Intercron another try too.

Here’s what I managed to find out: Gastcrom/Intercon contains 100mg of active ingredient, cromoglicic acid/sodium, suspended in a 5ml vial of distilled water, of which just 1% is absorbed. Adult dosage is 2 vials taken 4 times a day, side effects are common within the first month, and results should be seen after 2-3 months.

In my experience, I felt great the first day I upped my dose, then fluish for the next couple days. I dosed at 4 hour intervals, which avoided a dip when one dose wore off, before the next kicked in. Since I was still suffering from fatigue, I’d occasionally put it’s effectiveness to the test and hold off dosing for a few hours, at which point I could hardly bring myself to move.

Sure enough, when I upped my dose again after the 1 month mark, I no longer experienced that fluish feeling, but I still didn’t see any improvement. I’d been having headaches, hand pain, and painful/bloody bowel movements for several months and had had to revert back to a grain-free diet. I’d misattributed all that to a number of other things, before I finally realized the only likely cause was the Intercron. Then I began decreasing my dose and again felt good for a day before the fatigue returned.

For awhile, I’d suspected that the intercron wasn’t actually helping and might even have been making me worse. That initial boost of energy I got immediately after dose changes was nice, but so brief. After that, if I ever missed a dose, I felt immobile and, when I did dose on time, I didn’t have any more energy than I had before I began taking the Intercron. After 11 weeks, I stopped taking it, the head and other aches vanished and I recommenced eating gluten-free grains.

How You Can Help

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[Deutsch unten]
For many people with Eosinophilic Disease, eating a normal meal is an impossible dream. Can you imagine life without food?
So many patients (adults and children) are struggling at this time – hospital stays, food getting stuck in their throats, medication problems, formula coverage and the list goes on.
How can you help?
1. Go to amazonsmiles.com and choose “CURED NFP” as your charity of choice. You’ll be redirected to the main Amazon site. Amazon will then donate 0.05% of your purchase price to CURED.
2. Donate yourself. Even just 1$ makes a difference, it’s tax-deductible, and 100% of the profits go toward finding a cure. curedfoundation.org/donations/
3. Buy CURED merchandise at curedfoundation.org/gift-shop/ or bravelets.com/bravepage/eosinophilic-disorders to help start a conversation and spread awareness.
Für Vielen die unter der Eosinophilie leiden, ist ein gewöhnliche Mahlzeit einen unmöglichen Traum. Kannst du dir vorstellen ohne das Essen zu leben?
Viele Patienten (Erwachsene sowie Kinder) leiden zur Zeit – halten sich im Krankenhaus auf, die Nahrung bleibt in der Speiseröhre stecken, Probleme mit der Medikamente, ob die Krankenkasse die sämtliche Kosten übernimmt, usw.
Wie könnt ihr behilflich sein?
Die CURED (Campaign Urging Research for Eosinophilic Disease) Foundation bietet mehrere Möglichkeiten an Spenden zu sammeln.
1. Für die die bei amazon.com (Sprich: die amerikanische Seite) einkaufen: bei amazonsmiles.com “CURED NFP” wählen und weiterhin immer von da aus auf die Amazonseite kommen damit Amazon 0.05% des Einkaufspreises an CURED spendet.
2. Selber Spenden. Selbst $1 macht eine Unterschied und 100% der Gewinn geht an die Research! curedfoundation.org/donations/
3. CURED klamotten bei curedfoundation.org/gift-shop/ oder bravelets.com/bravepage/eosinophilic-disorders kaufen, um eine Diskussion darüber anzufangen und dadurch Verständnis und Aufmerksamkeit über diese seltene Krankheit wecken.

Eosinophilia & Elimination

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Years ago, I was hosting a couchsurfer who told me why dairy and wheat, in the form we typically have have access to, are bad for everyone. I listened, but I really couldn’t imagine my life without either. My diet then consisted largely of pasta with meat (I tended to forget the veggies altogether) and looots of milk. I’d often wait so long to eat that all I wanted was milk – only after downing a jug would I finally get something solid in me. He explained that the reason milk made me feel full was because I was bloated.

It wasn’t until a year later that I finally made the switch to goat’s milk. Goat’s milk isn’t homogenized like commercial cow’s milk, goats weigh the same on average as humans (cow’s milk is intended to get a calf up to the size of a cow), and goat’s milk is more similar to human milk. So even though we aren’t meant to digest large amounts of dairy beyond infancy, if you’re going to anyway, goat or sheep’s milk are the better choice. It wasn’t easy and I often cheated, but eventually I managed to stick with it enough to notice the difference when I didn’t.

Another year later, I temporarily repeated the same experience with grains, inadvertently eliminating my need for goat’s milk as well. Initially, I was craving like crazy, but eventually I adjusted and was unknowingly adhering more or less to a paleo diet. After a few months, I decided there was no need to restrict myself more than necessary and attempted a reintroduction. Re-adding grains seemed fine,  but it did leave a noticeable heaviness in my stomach as well as a visible bulge. I was also disappointed to discover that I could no longer tolerated any form of milk. I asked my couchsurfer friend if I wasn’t just making myself unnecessarily more sensitive. His response was, it may seem that way, but once you’ve rid your body of everything toxic you’ll feel so much better and even notice your taste buds becoming more perceptive.

Fast forward another couple years to when elimination was no longer optional, and I now know just how true that is. Now that my diet consists entirely of fresh/frozen whole foods, prepared daily by yours truly, I can distinctly taste the difference between organic and non-organic. Of course, organic chocolate chip cookies aren’t inherently healthier than non-organic bananas, but I was appalled to learn that non-organic olive oil is cut with other oils, despite that not being noted anywhere on the label. So while I buy organic apple sauce and chocolate in order to avoid unnatural preservatives and emulsifiers, I prefer organic carrots and olive oil purely for the taste. But more importantly, thanks to elimination, all the digestive and bodily pains have stopped, including the regular choking and constant throat-clearing.

I definitely understand not wanting to give up the foods you so dearly love, and if you tolerate PPIs or antacids, you do have a means of feeling fine and continuing to eat normally. But not only was that not an option for me, it also seemed too much like trying to control the symptoms rather than solving the problem itself and my body clearly agreed.

Elimination was rough initially, but it eventually gave me some much-needed clarity. One day I was out and hungry so I treated myself to a schokocroissant. It tasted great and everything was fine until that evening when I choked on a bite of fish. I knew the fish wasn’t the problem; the only thing that had changed was the croissant and the fact that I was choking told me that wheat was definitely a trigger and had caused my oesophagus to narrow. But because it wasn’t the trigger itself that I was choking on, that’s not something I could easily have been certain of before.

CHALLENGE

A challenge for all you healthy people:

The top dietary triggers for someone with an Eosinophilic Disorder are wheat, dairy, legumes, seafood, and eggs. Try making it just one day without eating any of the above!

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