Finally Starting IgG Infusions.

After 13 months of buildup, I’m finally scheduled for my first IgG infusion. Dr. Chia recommended I get IVIG (intravenous immunoglobulin) in August, 2014. When I came back to Seattle, I asked my GP about it and she said my total IgG wasn’t low enough (allopathic guidelines say total IgG < 400mg/dL) to warrant therapy. I asked my rheumatologist about it and he said because I have no evidence of persistent infections, I’d have to get an antibody vaccine provocation. I’m sure there’s a name for this, but, essentially, you are given a vaccine and then they look for an appropriate rise in antibody titers to that vaccine. If your body doesn’t mount a response, they can approve IVIG. Well, of course, I’m never getting a vaccination again, so that’s out of the question. I asked my main ND, Dr. W, and she said she didn’t have the ability to order it, but suggested oral IgG, which I never started because… another supplement, ugh. So, I’d given up on it when I went to a new ND, Dr. I, and I didn’t even think to mention it. After reviewing all my labs, the first thing she recommended was IVIG and, just like that, she got it approved. But… not so fast. That was 10 months ago and there was a lot of work to be done.

(As an aside, I do wonder if I’ve had low immunoglobulins my whole life and nobody looked into it. Or maybe it waxed and waned. I had chronic bronchitis, pneumonia and asthma as a child and, as an adult, got a chest infection pretty much once a year–probably more when I was smoking–but never thought this was unusual. Here’s a short article about one girl’s SCIG from infancy. It has some photos of infusions.)

Before trying IVIG, we decided I should try SCIG (sub-cutaneous IgG) because there are fewer side effects for most people. Before SCIG, I needed to test out the medications necessary to stave off anaphylaxis, aseptic meningitis, migraines and a host of other issues that can develop. Before testing the pre-meds, I had to make sure I could handle IV saline infusions since the last one I had caused a leaky anaphylactoid reaction. Before trying IV fluids, she wanted me to be on bioidentical progesterone, pregnenolone and DHEA, not only because my hormones are low, but also because there is evidence that hormone therapy can calm reactivity. And all of this has to be danced around my menstrual cycle because I’m somewhat reactive during ovulation and extremely reactive during my period. We also had to wait for me to get my nerve up because so much of this is dependent on my comfort level and, when anaphylaxis could be involved, I’m never comfortable.

I have friends in mast cell groups who “anaphylax” often, repeatedly, sometimes daily. I can’t imagine this. There are different levels of anaphylaxis, so I suppose these could be lower level reactions, but my episodes of anaphylaxis were full-blown and very scary, mostly because of the difficulty breathing. I really thought I would die and I probably have some PTSD from those experiences. No amount of sickness scares me as much as having a sudden anaphylactic reaction that kills me. I don’t want to get meningitis or be saddled with chronic migraines like my friend Jackie, but those are not at the top of my list of fears.

Having said that, I pay attention to comments like this since I, too, once had a CSF leak from a lumbar puncture and it was the 10 on my pain scale to which I now compare everything else. IVIG can mess you up:

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(FYI, I found this website with tons of allergy information and graphics that might be interesting.)

So, I’ve been on topical, compounded hormones for almost a year and they haven’t raised my serum levels much, but I think they’ve helped with sleep (they also cause greasy skin and hair, like I’m going through puberty, but I’m willing to put up with that). At the beginning of this year, I was reeling from the terrible nocturnal reactions and tongue swelling I had been having, so I wasn’t willing to try anything new. Finally, in May, I got around to testing a tiny bag of IV saline (it went fine, although the whole appointment and clinic visit was a total shitshow which lead me to write two long emails to my doctor. I came very close to not going back, but I really want this treatment). Then in July, I had a full liter infused over 6 hours (a very long time for 2 bags of saline). Everything went fine, no problems (but no boost in blood pressure or energy, either), which meant it was time to schedule SCIG, but, once I started researching in earnest, I realised that there were so many questions I needed answered.

IVIG is often done in a hospital setting if the person is high-risk. I would prefer to have more than just a nurse present if I went into shock (and, by all accounts, nurses’ competency levels are highly variable). My doctor didn’t know how to get this done because the company with which she works does home infusions; she recommended I ask one of my MDs for help. More time ticked by while I emailed my GP (who has only met me once), my endocrinologist and my rheumatologist (both of whom have only met me a few times) for help with this. They all said no. I talked to the infusion company (who have been incredibly helpful thus far) and they offered to do it in their “infusion suite”, but there are no doctors present and their protocol is to call 911 if there is an emergency. Well, I live a few minutes from a fire house and an emergency room, so home seems just as safe as the infusion suite, if not more so since my husband, who is far-too-intimately acquainted with my history, can be there.

Scrolling through Facebook groups, I realise I have to learn how many injection sites I’ll have and whether to use my belly or thighs and the needle size and how many ml you can put in any one area and leakage, hardness, weals etc. etc. My good friend, who is braving his way through gruelling IVIG treatment, has been giving me advice every step of the way, which is invaluable when your doctor doesn’t tell you exactly what the process is or the importance of hydrating or the effects of IgA.

Different brands of IgG have varying amounts of IgA in them. In general, lower IgA equals fewer reactions and, if blood tests show that you have very low IgA or anti-IgA antibodies, you will qualify for the IgA-depleted IgG brands. Isn’t this something my doctor should have mentioned? She wrote the prescription for Gamunex and I asked her if she would consider Gammagard or Hyqvia, both of which have lower IgA. but she said it wasn’t necessary. And she may be right, but wouldn’t you want to use every tool available to keep your highly-reactive patient as safe as possible? My IgA has been slightly low in the past, so, right before I was meant to schedule my first infusion, I asked my doctor, “Can you test me to see if I have anti-IgA antibodies?” and she said yes. Doesn’t this seem like something that should have been done originally without my asking, considering my history?? Maddening.

The IgA test was meant to take a week to come back and I didn’t get the results for 3 weeks, so here we are in September. One of the IgA subclasses was low out of range, but I didn’t have anti-IgA antibodies, so I couldn’t really make a case for changing from Gamunex. And I wanted to do it as soon as possible rather than wait until after my next period, which would put us in October, so I scheduled it for this coming Tuesday.

My doctor wants me to take 2 Tylenol (Paracetamol), 2 Benadryl and 3mg of Prednisone (Prednisolone) before my treatment. I needed to test these premeds because last year when I took Prednisone, I worked up very slowly to 3mg, I only ever take 1 Tylenol at a time and I have been VERY sensitive to Benadryl since having M.E.–plus I’ve never taken the combo. I realised my EpiPens were expired and so were my two boxes of Benadryl and my emergency Prednisone. It took more waiting time for new prescriptions to be called in and finding a good day for my husband to pick them up. When he did, I realised they had given me 10mg pills of Prednisone rather than 1mg (always carefully inspect your pills!) and he had to go back to the pharmacy for a fourth time in a week. Poor guy.

Last week I tried 1 Tylenol, 1 Benadryl and 1.5mg of Prednisone (using my expired stash). About half an hour later, I got a tight chest. Not enough to scare me, but enough to put me off trying more Benadryl. Then I got very shaky and drowsy and had low blood pressure. After I slept for about an hour, I was incredibly thirsty and hungry and then, about 4 hours after taking them, I felt better than I have in a while and was chatty and good-humoured. Success.

Last night I tried again, this time with 2 Tylenol, 1 Benadryl and 3mg of (fresh) Prednisone. I couldn’t bring myself to take 2 Benadryl. The good news is, I didn’t get the tight chest and shakes this time, I just fell asleep for an hour. The bad news is, I didn’t feel good afterwards at all. I had a headache, my eyes and lips felt swollen, I was completely parched and felt really out of it and hungover. But, this is HUGE for me. It is so incredibly exciting to take a bunch of medications and come out unscathed. I’ve been wanting to test this for ages so I have some confidence that, if I’m given IV Benadryl and/or steroids in the event of an emergency, I’ll be okay.

A few final hurdles: I’m scrambling to get two blood draws on Monday before starting SCIG. Dr. W has been trying to get me to do regular “hydrotherapy” for a year and a half. It’s basically hot and cold towels over my torso and back, coupled with electrical stimulation (instructions for doing it at home can be found here). I never wanted to expend the energy until she told me about a patient of hers with hypogammaglobulinemia whose IgG levels came into the normal range after 6 weeks of hydro constitutionals. She was willing to test my total IgG before and after if I did this experiment. I love quantifiable evidence! So I started in August and, even though it’s only been 5 weeks, I want to get my levels tested again before starting SCIG.

The second thing is a babesia test. I’ve been asking my ND about this since June–in person during appointments, in email to her and also to her assistant, who keeps saying she has to get the doctor to sign the form–and can’t seem to get anywhere. They say yes, but it never happens. How hard could it be to sign a requisition form?? Her last message to me said I could get my blood drawn if I make another follow-up appointment. Are you kidding me? That seems downright cruel when we’ve discussed this at my last 3 appointments and she only works two days a week. I talked to the director of Igenex, the lab that does the testing, and he said I should definitely get it done before SCIG, so I finally just ordered the test kit myself and I’m going to bring it to my other doctor, Dr. W, on Monday and beg her to do the blood draw along with the total IgG. I don’t understand why everything has to be such a battle. It’s exhausting and infuriating.

I’m trying to not be annoyed at the difficult communication with my SCIG doctor because, not only is she the only one getting me this treatment, but she was willing to start me at 1 gram the first week (unheard of), building up to 5 grams over 5 weeks. She was also willing to prescribe saline infusions along with the treatment. Only 500ml each time, but every little bit of hydration helps mitigate side effects. I’m deeply grateful to have someone willing to do that when an immunologist wouldn’t even have a conversation about it.

Wish me luck. I’m going to receive all the supplies by courier on Monday and then Tuesday afternoon a nurse will come over, start the drip and show me how to do the sub-cutaneous injections. I believe after that, I’m on my own. Or, maybe because I’m getting IV fluids each week, a nurse will have to come, I don’t know. I will take Zyrtec and hydrate like mad the days before and after… But, friends and family, I am very scared. Even though it’s SCIG and not IVIG and even though I’m starting at a laughably low dose, I’m still scared. I will eat fairly low-histamine in the next few days and do my breathing exercises and meditations before, during and after treatment, but still… I want this to be the beginning not the end. Are my affairs in order? Do you all know how much I love you? Remember: when I first got sick and thought I was dying, I wrote down directives and requests. Husband, remember: the notebook in my bedside table.

Now everyone knock on wood for me and spit over your shoulders. Toba toba.

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Oh, Christmas Tree. Oh, Christmas Tree…

We’ve always had a real Christmas tree; decorating it and wrapping presents to place under it has been half the joy of Christmas for me. A few weeks ago, I bought an Amazon Local deal: $20 for $40 to spend at a nearby Christmas tree lot and then I realised… we probably shouldn’t get a real tree this year. I am reacting to everything lately and I’ve been bothered by the small tree in my meditation room and the soil it sits in. Last Christmas was the lowest point in my ME journey so far and I’ve gone downhill since the summer, so I really don’t want to aggravate things by having a smelly, potentially moldy tree in the house for a month (most asthma and allergy sites I looked at recommended against a real tree). I even asked in my MCAD group and the vast majority of those that answered get a fake tree.

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So, we bought a fat 7.5′-tall artificial tree from my friend for $150. He said it was used once and kept in a back bedroom all year. My husband opened it up and we let it sit and air out on the porch for 5 days and then he moved furniture and broke his back bringing it inside, setting it up, and tweaking every branch and twig for an hour to make it full and beautiful. When I came through my vapour barrier from upstairs, before I’d even looked into the room and seen it was up, I knew the tree was there. It was like walking into a wall of smell. I couldn’t identify the smell. It wasn’t a plastic smell and it didn’t smell like dust or manufacturing stench, but it was a very large smell. I’d go into the kitchen to get something to eat and, as I walked back into the sitting room, I would stop short as I hit that fetor again. Over and over, the heaviness of it took me by surprise. My throat was burning, I got headachy… Normal issues for me, yes, but I felt like it was the tree. Or, at least, having those symptoms while being enveloped in that smell, correlated them in my brain. To add insult to injury, it is a really high quality, pre-lighted tree and the lights are SO INCREDIBLY BRIGHT in our small room, that it hurts both of our eyes and leaves spots in front of our vision. I thought bright lights were a selling point, but not in my world, of course. Central immune system sensitization is like an evil super power.

My husband, stony-faced, took it back outside while I apologised profusely for my fucked up body and my inability to do any of the heavy lifting. The guilt can be all-consuming.

I spent the next three hours shopping online for hypoallergenic artificial trees or green/healthy trees to no avail. Then I went on Ebay to look for metal trees and found these two for $100:

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Scentless (hopefully), washable… I started to get hopeful again that there could be something pretty to hang our ornaments on and create a festive feeling. I emailed them to my husband, bothered him at work to take off his rain gear (he’s a landscaper in Seattle) and look at the links (he hated the scroll one, but thought we might be able to do something with the spiral one)…

But then I found these metal trees on a different site:

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Twice as much, but maybe a good investment? I texted my husband again. There are no gold spiral ones left and only 2 black ones! We have to hurry to make a decision! Then I realised that they didn’t even guarantee Christmas delivery. So, best case scenario, we’d get it a few days before Christmas, which just doesn’t seem worth it when the whole pretty and festive lead-up to the day is what I enjoy (plus, it takes me weeks to decorate a tree with my energy level — a few ornaments a day) and, worst case scenario, it’d arrive after Christmas and be useless to us this year… and then probably go on sale in January.

I told my husband forget it, we’re shit out of luck.

Theeenn… I checked my emails. Somehow, while shopping for trees on my phone in my bed at 1am last night, my finger had hit “one click ordering” on Amazon (a really evil option that doesn’t bring you to a different screen to look at your shopping cart or confirm your selection, it just orders it — in “one click”) and we have an artificial “pencil” tree coming in the mail. I emailed the sellers because it said it hadn’t been sent yet: “Accidental order! Please cancel!” They answered that it couldn’t be cancelled and we’d have to pay to return it. To add insult to injury again, it’s not even on Amazon Prime and won’t get here until December 20th. And, of course, it’ll probably smell. And it’s made in China. So, we’re out $320 and our porch will be crowded with fake trees and, even if I manage to sell them on Craig’s List, my husband will be the one who has to deal with moving the trees, meeting the buyers etc. I honestly feel like I could take this all in stride, have fun getting creative and see the lighter side of this, except I’m just so guilty that my husband has to do all the work!

My new plan is this. I’m sure my landscaper hubby has a tall ladder:

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Addendum: Just as I was about to hit publish on this blog post, my husband called me and said, “I’m in Home Depot. The artificial trees are all $300+ and most have fake scented pine cones. I’m standing in front of the tomato cages. They’re 5′ tall and cost $3.97.” Hahaha! Hell yes! I had sent him this photo as a joke:

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We both laughed at the fact that we are going to have a wire tree that cost $3.97 and now I think this will actually be really ridiculous and fun. Happy Christmas! 🙂

DIETS Part III: finding a balance in low-histamine and figuring out how to eat more meat.

Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:

Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!

One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.

The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.

Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.

Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.

So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).

Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.

Frozen broth

Frozen broth

My weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
artichokes (contain quercetin, luteolin and rutin);
sweet potato (anti-inflammatory, contains rutin and quercetin) and butternut squash latke (antihistamine, anti-ulcer, anti-inflammatory and antidepressant action);
pomegranate (mast cell stabiliser, anti-inflammatory).
**Info from thelowhistaminechef.com**

Another weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
sauteed with spiralized zucchini (has anti-inflammatory, anti-ulcerogenic and potentially antihistaminic properties);
cauliflower (contains anti-inflammatory vitamin K) and sweet potato cake (anti-inflammatory, contains rutin and quercetin);
apple sauce.
**Info from thelowhistaminechef.com**

I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.

I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!

Banana-Zucchini muffins: click image for recipe

Banana-Zucchini muffins: click image for recipe

In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.

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

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…

DIETS Part I: gluten-free, allergy, autoimmune/anti-inflammatory, classic elimination, and low-histamine.

My mother told me recently that she only gave me soy milk for a long time as a child after my allergy testing showed I was allergic to half of the things on this planet. This is when I was 3. I’ve always known the story of the skin-prick tests done on my tiny 3-year old back. My mother was torn in pieces listening to her baby wail, so I’ve heard about it often. I knew the testing showed I was allergic to lettuce and rabbits and newspaper and so many other things it seemed like a joke. I thought we had always just ignored it to no consequence and that the first thing I ever stopped consuming was MSG sometime in the 90s. I kept swelling. One day, I awoke with my face blown up like a balloon: my eyes were slits, my lips made it difficult to speak, I could barely bend my fingers. This happened after eating frozen egg rolls in the wee hours, after a night at the pub, so I became really vigilant about avoiding MSG. Then, a few years later, I ate at a Thai restaurant with my sister. I never tempted fate with Asian food, but, god, I missed it! and the restaurant swore there was no MSG in their food. The next day, my face was swelled up, so I never tried that again. I still don’t know if the culprit is definitely MSG, but avoiding it, as well as all Asian food, stopped those acute episodes.

My next elimination was alcohol in 2002. It should have been difficult, but I thought it might be causing me to repeatedly go into anaphylactic shock, so I had no choice. When you’re worried about dying, you’ll give up anything.

I ate and drank anything I wanted for ten more years. And I ate a lot. Since I shed my college weight, I’ve always been around 7 stone (I haven’t switched to thinking of myself in pounds because I like the nice neatness of “7 stone”) and my husband would joke that I ate way more than he did (he’s 14 inches taller than I am). After thyroid ablation in 2009, I couldn’t eat as much as I used to – I didn’t diet, my body simply got full quicker and wasn’t hungry all the time anymore.

In 2012, while trying to cure what ails me, I stopped eating gluten. It never occurred to me that it would be permanent, but it seems it might be. It didn’t change how I felt one bit, but, after talking to numerous doctors and reading this book, it seems like it would behoove me to continue to avoid it – if not for ME, then for my (other) autoimmune conditions.

Soon after that, I had blood tests done that showed allergies to cod, tomato and egg. Giving up cod was no problem, tomatoes and eggs almost killed me. But, I thought, what if? So, I stuck with it and it’s now been a year and a half and, you guessed it, I felt no change.

When I started seeing the Good Doctor last year, she put me on a diet for autoimmune conditions which, she said, resembled most anti-inflammatory regimens. I stopped eating all grains but oats, all legumes, dairy and starchy veg. I cut down on sugar, I stopped eating processed foods, I stopped drinking sodas – even “healthy” stevia ones, even flavored fizzy water. I stopped chewing chewing gum, stopped eating lozenges with colourings. Although I missed all of these things, it was similar to anaphylaxis – I felt like I was (am) dying and would do anything to improve my situation, so the choice was easy. I stuck with this protocol for almost a year and… Felt no different.

This past August, my doctor switched me to a more “traditional” elimination diet. I was allowed to add back grains (except corn) and legumes (except peanuts) but stopped eating red meat, pork, processed meats, shellfish, soy, citrus, and most forms of sweetness: honey, maple syrup, agave nectar, and, obviously, sugar. This was only meant to last for three weeks before tackling challenges, but I took a turn for the worse with my symptoms and doing food challenges showed nothing definitive, so I’ve kept everything eliminated. Compounding this restriction was my low energy and my husband’s overwhelmedness with the changing shopping rules, so neither of us got out of the habits formed over the last year. I joyfully started eating rice again, but didn’t really explore other grains or legumes. Once you’ve been doing something for a long time, it seems a monumental effort to change.

When I saw the Good Doctor again at the beginning of this month, she wanted me to continue this elimination for three more weeks, while making a concerted effort to detoxify my liver because she is thinking of testing me for heavy metal toxicity and, if necessary, going through a chelation protocol. Specifically, what she told me to do was:

  • EAT FOODS TO IMPROVE LIVER DETOXIFICATION:
    • Cruciferous vegetables (broccoli, brussels sprouts, cabbage, cauliflower, watercress)
    • Kale
    • Swiss Chard
    • Collard greens
    • Garlic, onions
    • Grapes
    • Berries
    • Green and black teas
    • Herbs and spices such as rosemary, basil, turmeric, cumin, poppy seeds, black pepper, and lots of cilantro!
  • Metagenics Ultraclear formula: drink one shake each day (she already has me taking their probiotics and I get a patient discount).
  • Supplements [I am very happy to be taking vitamins again. I stopped all supplements and vitamins 3 months ago and never intended to stay off of them for so long. I’m eager to add more (CoQ10, Acetyl-l-carnitine etc.), but she is making me take things slow.]:
    • Vitamin D
    • Vitamin B6 & B2
    • Biotin
    • Glutamine
    • Zinc
  • Green detox soup[I said yuck to this soup because I thought it sounded like a warm green smoothie and I thought I didn’t like fennel, but it turns out it is SO DELICIOUS and I like to have some every day.]

This soup is a gift to your liver to help it with its critical role in cleansing and filtering the blood. Sulfur-containing foods, such as onions and garlic, will keep your glutathione levels and antioxidant power high. Cruciferous vegetables are great for all your detox pathways, especially estrogen. Enjoy this soup for breakfast, as a snack or any time of the day. You can make a big batch and freeze it in small containers.

Makes 4-6 servings

1 tbsp extra virgin coconut oil or olive oil
1 small onion, diced
1 tsp minced ginger
2 cloves garlic, minced
1 celery stalk, chopped
3 cups chopped broccoli, florets and stems
1/2 head fennel, chopped
1 tsp salt
3 cups water
1/8 tsp freshly ground pepper

Heat the oil in a medium pot on medium high heat. Add the onion and ginger and cook until onion is translucent. Add the garlic, celery, broccoli, and fennel and a generous pinch of salt and continue to cook another 2 minutes. Add the water, remaining salt and pepper. Bring to a boil, then cover, reduce the heat, and simmer for 20 minutes. Place the soup in a blender and blend until smooth and creamy. Adjust salt.

Now the fun part: I haven’t been eating the chard, onions, grapes and berries she instructed me to because I am experimenting with a low-histamine diet. I am always trying to link seemingly unrelated conditions from my past to what is happening to me now. Just like I thought (think) dysautonomia explained not only my symptoms now, but issues I had pre-ME like Raynaud’s and fainting, I started to seriously look into histamine intolerance (HI) and mast cell activation disorders (MCAD). The swelling, the idiopathic anaphylaxis (which happened more often than not during my period), the alcohol intolerance, the dysmenorrhea, the hypotension and syncope (which happened more often than not during my period)… All of this makes sense in the context of a histamine problem. I used to wrack my brain and research incessantly to try to figure out why I was going into anaphylaxis but they could find nothing to which I was allergic. Was it the alcohol? Was it my period? Was it garlic? Was it ibuprofen?

When the allergist explained autoimmune urticaria and angioedema to me, he said the rashes I got during anaphylaxis and the swelling I’ve always experienced were the same mechanism in the body, just in different dermal layers. He said they are caused by tissue permeability and leakage and any vasodilator, such as alcohol, will potentiate the problem.. To demonstrate the autoimmune process, he injected me with my own plasma and I had a reaction on my forearm similar to the histamine control. He said these episodes could be brought on by emotional turmoil or stress and there is nothing to be done but take antihistamines. I counted myself lucky because some people have horrible chronic urticaria (I really recommend the film, Fat, Sick & Nearly Dead).

The more I researched histamine issues, however, the more I realized that my allergist, like all doctors, is limited by what he doesn’t know and what science hasn’t discovered. I asked my GP, the Good Doctor and my new environmental doctor about testing for MCAD and every one of them said they don’t know how. It turns out there really aren’t good tests, but they didn’t know this ~ they didn’t know anything about it!

I am going to continue the info about my low-histamine diet experience in Part 2 of this diet post (as well as all the other crazy elimination diets I’ve been researching: ketogenic, alkaline, low-salicylate, migraine) because there is a lot of information. But I’m giving you homework, if you’re interested in this topic at all: Listen to Yasmina Ykelenstam’s (The Low Histamine Chef) interview with Dr. Janice Joneja. There are 2 parts, but the first part is the most important. Get comfy because it is 49 minutes long and have a paper and pen ready. I’m telling you, it’s worth it. Dr. Joneja is so clear and knowledgeable.

Until next time…

What a difference a day makes.

Yesterday, I had an extreme reaction to the tiny dose of doxylamine succinate (unisom) that I take to sleep. It is the only drug that has worked and I have been careful to use only 1/4pill at a time and only a few nights at a time. But not careful enough, I guess. My body totally melted down yesterday. There’s no other way to describe it. Pre-syncope doesn’t do it justice. It felt like an antihistamine overdose: very shaky, clammy, headachy, short of breath, heart rate all over the place, blood pressure bottoming out, collapsy, chilled to the bone (mini convulsions of chills), and then swollen and heat drenched…

I really thought I was going to have to go to the hospital and, once I knew I wouldn’t pass out and wouldn’t need paramedics, the fear and depression set in. I’m scared of everything. I’m scared of drugs, eating, not sleeping, talking, walking, not walking, dying alone. This is no way to live. When I asked my husband what he loved about me when he first met me, he said, “You were fearless.” This makes me lament my current brain even more. What I would give to be fearless again!

I have a tilt table test scheduled for Monday and, if the horror stories online weren’t enough to terrify me, having this meltdown happen to me yesterday has definitely doused all hopefulness that the test could go well. Today I feel awful – extremely, achy, stiff, sore, and depleted. My eyes are swollen and my head is pounding. I feel just like I did after each of my syncope and anaphylaxis episodes: like I lay all night in a room full of black smoke while MSG dripped into my veins and strong men beat me with baseball bats. So, I’m really going to go get syncope symptoms provoked in a lab on Monday? I can’t take any meds this weekend and no caffeine, food or water the day of the test. That alone could be really bad for me. I’m scared of dehydration and low blood sugar. They are also conducting a sweat test, which I’m told is painful, and they don’t offer IV fluids after the test.

There are other things adding to my current distress:
I missed my physical therapy appointment yesterday. This is the second appointment I’ve missed with a practitioner who is in such high demand it takes months to get in to see him. I’m mortified and guilty.
I wanted to call Z. and Skype with E. (my best friends), both of which must be put on hold for weeks.
I’ve told my sister no the last five times she has offered to come over for a visit.
I was hoping and praying I could go to the cemetery on my scooter with my dogs this weekend, but it’s not going to happen. It has been weeks since I’ve gone there and the weather is meant to be pretty good. This gives it a sense of urgency because it’ll be wet and cold for the next six months.
My brother the pilot has another layover in Seattle two days after the autonomic testing and I don’t think I’ll be up to seeing him.
My appointment with the neurologist to go over my test results is on Halloween at 8am. Most of you know the fear this strikes in me. Up at 6am (after trying to sleep with no drugs) without my three hours of “gather my strength” time in bed in the morning, no food (because I can’t eat that early), trying to talk to a doctor and comprehend that early in the morning…?!
My gallbladder (?) twinge is back with a vengeance and I’m scared all over again about having to get emergency surgery with this sensitive, intolerant, anaphylactic body.
This happened right after I had added back steak and bacon to my diet and right before I was going to challenge eggs, so now I’m left nervous to eat any of those things (I was so looking forward to a day with eggs!).
And, finally, I’m sure I have a mast cell disorder (which I’ll write about one day) and that makes me more scared than my normal ME scared. If I have such a vicious reaction to the drug that is meant to prevent allergic reactions, what hope is there for me? I looked into a low-histamine diet and Jesus! No dried fruit, no black tea, no apples, oranges, pineapple, spinach, chocolate, leftover or processed meat etc. etc. Just give me a pill and fix it, dammit!

Anyway, sorry, my fingers are swollen and I have to stop typing. This was going to be a very short post to let friends and family know that I am going to try my hardest to do NOTHING for the rest of the month. I’ll be out of touch, but will read anything you write and thank you for your support and understanding. Gratitude for the fact that I’m not alone. X
And for the Project Runway finale I get to watch right now! 😉

Codeine Allergy?

I am going to tell the story of what happened to me yesterday so that maybe someone out there won’t feel like they are alone or crazy or dying. I searched the internet on my phone for hours and couldn’t find anything similar to my experience. Doctors don’t believe this sort of sensitivity exists ~ even my doctor who knows me well has looked at me incredulously when I describe how a painkiller affects me. But I would have NEVER guessed that my body has become as sensitive as it has. I knew I could feel the effects of very low doses of drugs, but this takes it to a new scary level.

A few days ago, my headache came back and I took 500mg of acetaminophen. It didn’t really touch it. Yesterday, my headache was bad, but also my neck was in pain. It wasn’t terrible ~ I could have powered through it by just going to bed early ~ but I thought, I haven’t taken painkillers in ages ~ since Christmas, really ~ so a Solpadeine will be quite effective and probably won’t give me a bounceback headache. Solpadeine is 500mg acetaminophen and 8mg codeine. They are like Tylenol 3s, except Tylenol 3s have 30mg of codeine. They are over the counter in Ireland and I’ve taken them on and off my whole life. The dosage on the box is two tabs dissolved in water. I took one. A little while later, I was hit by a freight train. I am not exaggerating. I’ve never taken oxycodone, but it felt like I imagine that must feel. I was high, which was odd because it has never happened with Solpadeine before, but that’s fine. The bad part was my lungs immediately closed up. I was fine one second and I was having a VERY hard time breathing the next. It’s not like you are out of breath or in pain or wheezy or anything, you simply have to work very hard at inflating your lungs and it is terrifying ~ I’m surprised I didn’t go to the ER, but the ER can do two things: give you different drugs to counteract / help the reaction and give you oxygen. I wasn’t going to take any other drug. This happened from ONE SINGLE OTC SOLPADEINE! So, who knows what else my body will react to. I wouldn’t have minded the oxygen, but not enough to spend that kind of money while sitting in a building of flu. I knew, if it got worse, I’d have to go no matter what, but I decided to monitor it.

During my research, I discovered a few things: for pain, people are regularly prescribed up to 120mg codeine. Addicts that use codeine can take three times that amount. I realise I am a small person with a sensitive system and I’m not an addict, but 8mg? Really? If I’d had ANY idea this reaction was possible, I would have dealt with the pain. This wasn’t a little respiratory depression, this was serious. I also learned that the vast majority of patient-described “allergies” to opioids are reactions to the histamine released by the drug and not an actual life-threatening allergy. Why didn’t I know that codeine releases more histamine than other opioids? I don’t know. I should have. It probably would have stopped me from ever taking it again since I try to avoid histamine release in my body if at all possible.

The scary part in the literature is that they describe the non-allergic histamine-produced reaction as itching, flushing, hives etc. and they describe the true-allergy IgE-mediated reaction as “bronchospasm or respiratory distress, laryngeal edema, hypotension, and even acute vascular collapse.” ~ which can be life-threatening. So, that made me nervous since I was only experiencing respiratory distress (a more serious side effect) and a stuffy nose. But, honestly, I could see the ER doctors’ faces when I say, “I can’t breathe from 8mg of codeine and I’m afraid of dying.” Well, you can’t say the latter because you sound like a melodramatic, histrionic lady (who also happens to have that crazy made-up illness Chronic Fatigue Syndrome), but you can’t even tell them you are reacting to such a low dose of something because they’ll scoff and think you’re exaggerating.

So, I stayed put. I didn’t take an antihistamine because I didn’t want to depress my CNS any more and I didn’t take my inhaler because I have no idea if it would help and I didn’t want to get all shaky from the albuterol. I didn’t even take my supplements. I just drank water and waited. About 5 or 6 hours later, it started to ease up and, once my lungs opened again, it underscored just how tight they had been. It was like someone took the pillow off my face and loosened the very tight straps around my rib cage.

Now I wonder: was it a true allergy or a histamine reaction? It matters for the future. It matters if I’m ever in the hospital in dire need of painkillers. No NSAIDS and no morphine derivatives. And please no histamine-releasing anesthesia. What a nightmare.

To top it off, I had drenching, awful night sweats in my sleep afterwards. It was the first time since December 10th, which had been the first time in months before that. This morning, my chest is still tight ~ not quite back to normal yet. My eyes and fingers are swollen. I’m shaking like a leaf. It’s not normal and it’s so frustrating. It makes me nervous to try any drug ever again. Can’t take anything, can’t eat anything, can’t be in the sun, can’t be in the cold, can’t be around smoke, can’t be around noise… What’s next? Get rid of dogs, smells, colours, electricity? This is no way to live. Give me the puking reactions or the drowsiness or the rash or anything besides not being able to breathe. It’s the scariest feeling in the world and to all of you out there suffering lung disorders of one kind or another, I send my sympathy and compassion your way. Remember: As long as you are breathing, there is more right with you than wrong with you.