February 19, 2014 by Elizabeth Milo

DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?

Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!

So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.

Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).

raspberry pop tarts

Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.

To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.

The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.

I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.

If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.

To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…

February 14, 2014 by Elizabeth Milo

My Funny Valentine

As a Valentine’s Day present to my husband, I decided to get marginally dressed again. I put on a bra and a red dress. Unfortunately, the dress, although clean, hadn’t been worn in a while and it smelled musty, so I switched to a pink sweater (pink and red are really living on the cutting edge of colour for me; they scream: I’m dressed up! I’m making an effort! ~ 90% of my wardrobe is black and grey) and leggings that have pockets and corduroy-type ribbing, so they give the impression that they are more civilised than mere cotton leggings. And I put on my new boots. I won’t take a picture every time I put boots on, I swear, but I never thought there would be a pair of flat boots that I liked and, more importantly, were proportional to my munchkin frame.

Unfortunately, after two changes of clothes, my battery is almost dead and I’m dizzy and incredibly drained. I woke up feeling okay, excited that I wasn’t feeling evilly ill, but how dare I pull on leggings that take a bit more effort than PJs and bend down to put on boots rather than slip my feet into slippers? It was too much and it’s only 11am. I know I will be wiped out when my husband gets home.

The entire plan was: get dressed, brush hair and maybe put on make-up. Although, all my make-up is 2+ years old and putting it on means holding my arms up in front of my face, which is a lot of energy, and it also means having to take it off. Exhausting. I wracked my brain to think if there was something I could do to surprise him. Cook dinner? No way. Clean the house ~ or even just the sitting room? Nope. Buy a present? Too late to do it online and I wouldn’t know what to get, anyway. And we’re trying to conserve our savings. So, I think my present is going to be yet another card thanking him for saving my life every day (because, make no mistake, I would be in a very different predicament without him) and wearing clothes that kind of fit me.

The funny thing about my husband is, he would never notice what I’m wearing. I could be sitting on the couch in a ball gown and he wouldn’t bat an eye. I kind of love that about him. I certainly never have to feel self-conscious about looking slovenly. He tells me I’m beautiful even on my sickest days. Love is blind.

One of the most distressing symptoms over the last year is hair loss. Never could I have predicted that I would be upset about my hair. I don’t really like hair. I’ve always preferred men with shaved heads and, half the time when I’m talking to people, I’m thinking about how much I want to tuck their hair behind their ears or put their hair in a ponytail. I find it distracting (and kind of gross) that every woman on tv has what I call “hair curtains”. Long waves down the sides of their face that are pulled forward so they have this weird part in the back of their head and no hair down their back.

Hair curtains.

Weird back of head.

So, what do I care if I have less hair? Well, my hair loss makes me look even more sickly because it is concentrated in the front and on top. You can see my scalp too much and there are clumps of short hairs that are either breaking off or just won’t grow any longer. I was on a Facebook group and someone mentioned that, because she was in the military and constantly wore her hair in a bun, she was going bald on the top of her head, so she cut her hair short. Light bulb! I’ve worn my hair up every day for the last 17 months that I’ve been housebound. So, I’m cutting it short. I’ve had my hair very short before, so it’s not a big deal, but I do have a few concerns: 1) I can’t dye my hair now, so there is a lot of grey. I’m not sure how I’ll like short greying hair. 2) I can’t wash my hair very often and, when it’s dirty, it’s nice to be able to put on a hat and still have the illusion of clean from the long hair coming out below the hat. 3) You can put long hair up in such a way that it gives the illusion of being more “dressed up”. But none of these things will sway me because I have to wear a CPAP! The headgear on a CPAP mask is hell with long hair and is undoubtedly contributing to the hair loss.

My sister’s hair stylist is going to make a house call, bless her heart. I wish I had longer, lovelier hair and I could donate it like Marie did, but I just don’t have the patience to grow it. The point of all this is to say that I guarantee my husband doesn’t even notice when I cut my hair. I have left the house with long blond hair and come back with a dark brown bob and, even when prompted, he couldn’t figure out what was different. When he met me, my hair was very short and fiery red. He’s pretty much seen it all. Luckily, days before I met him he had shaved off his long hippy hair. I sometimes wonder if I would have fallen for him if he had a ponytail. Probably. Love is blind.

Happy Valentine’s Day.

1998

Title Credit

February 9, 2014 by Elizabeth Milo

Photo update because I don’t have the energy to write a word update and I’ve been snapping random pictures for the last month and thought I would share. :)

I’m still having a hard time finding the energy to write a post. I’m doing okay- it’s mostly because I am feverishly researching all the things my doctors want me to add to my arsenal (methylfolate, methylB12, carnitine, Zyrtec, Zantac, Cromolyn, Baclofen, Valium, Prednisone, Medibulk), as well as what I want to add (CoQ10, D-ribose, bread, cheese, Toblerones :-)).

So, my precious few computer hours are used up on research, emails, doctors, insurance, bills, and more research.

But, if you would so indulge me, I can post some photos of the things going on in my life (of course, with my fun anonymizing effects).

Visitors!

A visit from Baby A. and her Mama….

… my friend, Z.! (and that’s my “little” dog)
This photo was a BIG DEAL: I put on jeans and boots (my first flat pair of boots EVER) for the first time in 17 months. Literally. I have only worn leggings/yoga pants and Uggs/runners every day for 17 months.
Of course, as soon as Z. left, I went back to my PJs, but it’s the effort that counts!

A visit from my mother AND brother!
Yes, I am standing up and smiling and tolerating photos! Amazing.

Winter Wonderland!

A rare few inches of snow.

FOOD!

Egg challenge. It didn’t go so well.

Plantain crackers: click image for recipe.

Grass-fed organic lamb shepherd’s pie with cauliflower-sweet potato mash: click image for recipe.

Spice blends from Practical Paleo: click image for link to book.

An incredible batch of granola for Z. that I couldn’t taste because I’m not eating oats at the moment.

My husband makes me meals and freezes them, like this beef stew. ❤

Breakfast: butternut squash, asparagus and grass-fed beef hash, with a side of apple sauce.

A bit of craic, sure

Animals? 🙂

Anna’s hummingbird outside my window.

Bowie in the cemetery last month (I haven’t been able to leave the house in the last 5 weeks, but I hope to get a February cemetery visit in a few weeks)

The Seattle Seahawks won the Super Bowl! But Bowie was not a fan of the celebratory fireworks and backed himself into my lap in fear. 😦

Morning spooning.

January 20, 2014 by Elizabeth Milo

AIP + Low-Histamine Recipes

Tangerine, tangerine,
living reflection from a dream…

That’s what I was singing this morning. Not just because Led Zeppelin is the best band to ever exist, but because I was unpeeling what was going to be the first citrus fruit to cross my lips in 5 months. Today was citrus challenge day!

I never cared about fruit before ~ in fact, I downright hated it (see this, this and this post) ~ until I went on a low-histamine and low-sugar diet and, suddenly, a grapefruit sounded like the forbidden sweet treat of my dreams. Then, a few days ago, I eliminated oats for breakfast and, faced with the option of nothing but meat and veg in the morning, I started craving fruit like never before. So, this morning I had a sweet, succulent tangerine and tonight I had orange, beet and red onion salsa. Yum!

This is a multi-faceted challenge. The Good Doc wanted me to add back in certain things that typically can contribute to fatigue and pain, citrus being one. However, citrus is not low-histamine, so, even if I don’t have a worsening of my usual symptoms, it could be filling up my histamine “bucket”, which could contribute to a flushing episode or angioedema now or in the days to come.

The rest of my dinner was lamb sliders on sweet potato “buns”. We used this Nom Nom Paleo recipe for the lamb (minus the pomegranate molasses). Damn, they were good!

Even though I haven’t written the second part of my Diet post and you’re not intimately acquainted with the hell that is my current food life, I want to post some recipes. So, as I mentioned in my last post, I am gearing up to try a month (or a lifetime) of an AIP (autoimmune paleo)+Low-Histamine diet. The only things I have left to eliminate for the AIP protocol are seeds, almonds and rice.

Here are some other AIP+Low-Histamine recipes that I have loved:

Radish, Mint and Cucumber Salad: This recipe is totally AIP, but, for low-histamine, remove the lemon juice, zest and ACV. I used olive oil, lemon juice and tahini for the dressing because I haven’t eliminated all seeds yet.

This Artichoke-Zucchini pasta recipe is my all-time favourite comfort sauce. I had it just like this over rice pasta (not AIP), then froze the rest and later had it over spiralized zucchini (spiralised courgette ;)) and grilled chicken breast. If you are strictly low-histamine, be careful of the thyme and the arugula.

This Chicken Bacon Alfredo was so good, I ate it until I couldn’t breathe. Strike 1. Then, the next night, I ate the leftovers and had that bad flushing episode I talked about in my last post. Strike 2. So, no more bacon for me. I’m back on the strict-ish low-histamine train. But, without the bacon, it is AIP+low-histamine and I bet it will still be delicious (watch the thyme, if you can’t tolerate it).

I wish I’d taken more photos!

“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do, you have to keep moving forward.”

— Martin Luther King Jr.

January 18, 2014 by Elizabeth Milo

January Update

I don’t want you all to miss out on my exciting life just because I am too ill too write. So, here are the Cliff notes from the last three months:

* An abdominal ultrasound found nothing for the twinge that never goes away. They told me to go to a GI doctor because the ultrasound doesn’t look at the intestines and bowels. I won’t be taking their advice.

* My oral appliance for sleep apnea was incorrectly made for the sixth time. They took impressions again (I’ve lost count now), had it made again, called me last week and cancelled my appointment because something was wrong again and they sent it back to the lab. Again. I’ve gone from disbelieving to irked to irate to laughing to crying and, now, I just don’t give a shit.

* My CPAP machine was still malfunctioning with the whole revving pressure thing, so we swapped it out ~ again. While we were waiting for a new machine, I got three loaners. The first one dumped water all over my face no matter which mask I wore and how little water we put in the chamber. I’d wake up at two in the morning spluttering and coughing from water up my nose. The second loaner’s motor screeched like it was 70 years old and in need of an oil change and I couldn’t get the third one to work properly at all. My permanent replacement is now my third machine (sixth, if you count the loaners) and it seems to be a keeper (albeit still hell to wear a mask).

* I saw an ophthalmologist who said that I am a “glaucoma suspect”. More on that at a later date.

* I had a bad flushing episode while watching the Golden Globes (awards season! My favourite tv time of year!). I can’t remember ever feeling so on fire. I was sitting naked on the couch, red-faced, sweating, ears on fire, nose plugged up, pain in my cheekbone… I’m still trying to figure out what caused it. Lime or leftovers or bacon or all of the above. My husband had to go out and get me Benadryl. I poked a whole in the capsule and dripped about 10mg on my tongue. My god, that’s nasty. If you can tolerate a whopping 25mg of Benadryl, definitely just swallow the capsule. Yeck.

* Then, last night, the first day of my period, I had a bad vasovagal syncopal episode. I hoped these were behind me. I was doing everything right. Lots of fluids, lots of salt, tylenol, in bed, horizontal… But, the minute I got out of bed to scrounge up some food, I went down. This is much different from feeling light-headed because I got up too quickly or feeling dizzy because I simply have low BP. This is diarrhea, shakes, freezing cold, grey pallor, shallow breathing, cold sweats, and very low heart rate and BP. I thought I was going to lose consciousness and go to the ER, as I have so many times before, but I will fight tooth and nail not to go anywhere near the House of Flu during peak season. Not to mention the fact that I’m scared of IV fluids now that they caused an angiedema /anaphylactoid reaction a few months ago. A ton of salt, electrolytes, and water later, my BP was high enough to register on the monitor (when it’s too low, it won’t register. Gotta get me a better quality monitor) and my heart rate had come up to 60. Again with the biting open of a Benadryl capsule.

I have asked three doctors for help with the mast cell activation tests. I would prefer to have baseline results before I start treating myself with antihistamines and mast cell stabilizers, but they brush off my requests. I research incessantly for help with this problem and, like ME and POTS before it, there seems to be only a handful of knowledgeable doctors in the country and none of them is anywhere near the Pacific Northwest. I can’t help thinking these doctors don’t know what they’re missing. If you knew how amazing this part of the country is, would you really choose to live and practice on the East coast or in North Carolina, Minnesota or Nevada? Really? No offence to all that live in those places! I just watch the weather reports and think quite often, thank god I live here and don’t have to deal with hurricanes/arctic freezes/flooding/20 inches of snow/drought/100+ degree days/tornadoes etc. I like owning one set of clothes.

* My biggest, baddest symptoms at the moment: feeling and looking utterly wasted/half-dead (no invisible illness here!); muscles not working; brain not working; sleep problems; nightmares; eyes blurry; vertigo; shakes; hair loss; headaches; a daily sore throat that feels like perma-strep; feeling overwhelmed. Also, my reactive hypoglycemia and mast cell issues remain a constant threat and, managing them, a constant chore.

* My low-histamine diet attempt (I’ll write more about this in Part 2 of my “Diets” post when/if I’m able to think more clearly) was very difficult and led to more-than-usual blood sugar crashes ~ at different times of day and lower numbers. But I’m still trying to do it, as well as an AIP diet (autoimmune paleo). Oh, I started a Facebook group called, “Low-Histamine + Autoimmune Paleo (AIP) Help.” Please join if you’re another unfortunate with compounded histamine and autoimmune problems!

* I got an Rx for compression stockings, so maybe insurance will cover a decent pair, but have not had the energy to measure my leg or find a medical supply place in the last two months.

* I got a permanent disabled parking permit approved by my GP. I find this really depressing for some reason.

* The Good Doctor ordered the NutrEval test that shows everything about your nutrition and some heavy metals. The test itself was a nightmare. You can’t take any vitamins, supplements or drugs (that are not medically necessary) for four days. That means no sleep help, pain help or poop help. You have to restrict your fluids the day before the test, which, of course, led me to have a blood pressure drop and dizzy weakness in the evening, which led me to drink a bunch of water before bed, which might have altered the test results by diluting my morning urine collection. Then you have to freeze your urine before getting your blood drawn on the same day. The blood draw instructions are convoluted, so I was already skeptical that the phlebotomist would do it properly ~ keep everything frozen and get it in overnight mail. Because, if it’s not your bodily fluids and not your $159 and you don’t know the ordering doctor, why would you be vigilant about the details?

I asked the Good Doc what lab to use for the blood draw. She didn’t know, so she put me in touch with the company rep who told me I could go to any lab ~ “Any lab at all!” I called LabCorp, Dynacare, US Healthworks, NW Hospital, Swedish Hospital and they all said no. I called the rep back. She said AnyLabTestNow.com and Quest labs. I called and they both said no. I called the main 1-800 number for the test company (Genova), they said Pacific Physician’s Labs. All three phone numbers listed were disconnected. Ludicrous! I finally went in person to the lab where I get my thyroid blood drawn and conveniently didn’t mention that this was not my usual doctor from that clinic. They did it, but said they had to courier the samples to their downtown lab and hoped that it would be frozen there and shipped off later in the day. I don’t have faith it made it out of their fridge, honestly. What a nightmare. And this was all done FASTING. Not cool.

* My environmental doctor, Dr. B, ordered a methylation blood test, a mycotoxin urine test and a new Lyme disease test, plus co-infections. The latter tests I can’t afford ($1100+ really?), but I got the results for the first two. Most everything on the methylation test was low (I’ve put the details in my tests page). He told me that I had a MTHFR mutation (what I like to refer to as the “motherfucker mutation”) and my glutathione and all folic acid derivatives were low and I should start taking methylB12 and methylfolate. But I haven’t. Yet.
Also, I got a positive test for something! I tested positive for ongoing mold exposure. Aflatoxin was just on the verge of too high (equivocal), Tricothecene was more than twice the normal range, and Ochratoxin was off the charts high. Unfortunately, if this means moving out of my house and leaving all my possessions behind and living in an aluminum trailer in the dessert, I wish, for once, the test hadn’t been positive. I guess now we need to spend another million dollars getting our home inspected. Although, I have a feeling, just like my ultrasound, MRI and CT scan, that they will find nothing. I probably was exposed years ago or it’s from my overindulgence in oats and nuts or it’s from lying in my garden this summer or we’ll never know. Of course.

* Annnnd….. then my 23andMe came back today… and I don’t have the MTHFR mutation. Dr. B was wrong. I am much more likely than the average person to have rheumatoid arthritis, but I don’t have the mutation that we assumed I had, that my doctor said I had, and that my husband and I have been feverishly researching for the last three months… I know I’m not meant to say it, E., but FML. It was the only treatment for which we had a glimmer of hope. My husband has been cheering me on the last few months: “Hold on! When we get your 23andMe results, we can start a methylation protocol and I really feel this will be the turning point!” Bless him, he is a natural optimist and I just stare at him blankly, try to muster a smile of hope…

Fear not, readers, I am a mutant in other respects and I will hunt down info about the homo/heterozygous SNPs that I do have.

Until next time, I will be shopping the internet for a caravan that is old enough that its interior won’t off-gas noxious fumes, new enough that it isn’t dusty and moldy, big enough that it can house my husband and dogs (in a separate room), modern enough that it can power a large freezer for my low-histamine meals, and comes with an unending fresh water supply, a built-in air filtration system, lots of windows so I can look outside, lots of black-out blinds so I can sleep, has a very comfortable bed, is sound-proof, weather-proof, never gets too hot or too cold, has five million dollars stashed in the floor boards, parked in the dessert, next to a hospital and a Whole Foods, like a pig in a cage on antibiotics…

Now excuse me, I must make haste. The SAG Awards are on and I’m hoping to watch them sitting up, while ingesting food and not collapsing.

Rag and Bone Shop of the Heart

E.M. AND M.E. AND M.C.A.S.

Category Archives: CFS/ME