May 31, 2015 by Elizabeth Milo

Throwback for ME Awareness

To acknowledge the last day of M.E. Awareness Month, I am reposting an excerpt from my diary from three years ago. I had only been sick for four or five months, I had no idea what was going on and felt for sure it would kill me.

Muscles pumped full of lead ~ No. Heavier. Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, ready to strain, buckle, seize up. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest. Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Chills. Bone-chills. Shivering, unable to talk, nose going to fall off, can’t breathe, feet going to fall off, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched. And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the bathroom, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think.

It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic. I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before. I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions. To live life. To not die.

November 25, 2014 by Elizabeth Milo

November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

What I see now from the top of the stairs:

I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

We bought a proper comfy dog bed for the kids seeing as they are arthritic and bony (it was on sale, has no fire retardants and is returnable at any time, even if used). It’s the size of a small country. 110-pound Bowie is thrilled when he can actually lie in it and Little Guy doesn’t relegate him to the crappy small bed.

I found ants in my room one morning. They were running in droves all over the floor. It took days and days to kill them and there are still carcasses strewn about. It was pretty gross.

I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.

I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

Ok, I can’t avoid it any longer, I have to eat. And that was really dredging the bottle of the barrel for stuff to tell you about.

I’m thankful for all of you, too, dear readers. You have no idea. Love and thanks and nom nom nom gobble gobble to everyone this week. X

October 31, 2014 by Elizabeth Milo

Día de Muertos

I can’t remember what was on tv. I was listening casually while I sat writing Christmas cards on the other side of the room. I had five half-boxes left over from the years before and I was determined to have all of them written on time because I’m notoriously late with cards. I decided to start writing them on Halloween night because I could see our gate from the dining table and, when the kids arrived, I could dash outside with the bowl of chocolates before my dogs heard anything and went into cacophonous protection mode. I was hunched over, scribbling and, when I straightened, I felt this ripple go through my body. I’ll never forget that feeling. Like a ghost had walked through me. Like unearthly cold hands had reached inside my body and stroked downwards, from head to toes. A momentary shudder through my brain and nervous system that I never imagined would settle into each muscle and fiber, growing, mutating, eroding. I think of it now and wonder what was happening on a cellular level while I was nonchalantly scribbling notes.

I said, “Oh, I’ve been at this too long” and went to the armchair, curled up fetal, and fell asleep. An hour later, I awoke and knew something wasn’t right. Although it hadn’t really started yet, it felt more serious than a cold or flu. I felt unstable on a systemic level and thought it might turn into one of my syncopal episodes where I would collapse, pale and clammy, with a barely detectable blood pressure and pulse. I said to my husband, “You have to come to bed now. Something might happen and I won’t be able to make it down the stairs to get you.” Those were the days when we used to share a room. Before my illness became my bedfellow.

I spent the next four hours colder than I’ve ever been in my life. I was fully dressed, in bed with a hot water bottle, teeth chattering, shaking so violently, little moans were squeezed from my chest. I vividly remember the eternity it took me to move my hand out from under the duvet in an effort to cover one freezing ear. I thought if my hand left the relative warmth of the blankets, it might freeze solid and shatter into pieces. Oh shit, shit, shit. I’m sick. This is a doozy. I couldn’t ever remember having something like this, but it reminded me of my husband’s horrid battle with chicken pox. He was the sickest person I’d ever seen.

I drifted into sleep, curled in a tiny ball against the headboard, holding my knees, and, when I woke up, I was drenched. I had never experienced even slight night sweats and I couldn’t believe my body contained so much fluid. It was as if someone had poured a bucket of water on me. I could slap my stomach and make little splashes of sweat. And I was so relieved. I had assumed I would battle this virus for days, but the fever had broken after only a few hours and it would be a quick recovery. How could I imagine that I would continue to experience this almost every night for the next two years, losing lifeforce into my bed sheets, becoming weaker and weaker?

I spent the last of the night drifting in and out of fever dreams, waking up intermittently, sweaty and shaky. My husband snoozed peacefully beside me. At one point, my bowels cramped up and I wondered if it was just some atypical food poisoning event. In the morning, I decided I was on the mend, showered, got dressed and went to work. Because that’s what you do… So, that’s what I did. You’d have to be on your death bed to call in sick and, besides, I wanted to save my days off for Christmas.

*****

I’ve thought about that night a lot over the last three years. The moment my immune system shifted permanently. My utter naïveté about what could happen to a body. Although I’d taken many premed classes and had quite a few health problems in my life, it really never occurred to me that I wasn’t unbreakable. Or, at least, if I broke, I assumed I’d be able to be fixed if I put in the work. I had been diagnosed with Graves Disease a few years earlier, told it would kill me without treatment, had radioiodine ablation on my thyroid and had to avoid people for two weeks. And, during all of this, I never took a day off of work. It also never crossed my mind to get a second opinion, talk to others with the same condition or change my eating and sleeping habits. I just popped the radioactive pill and got back to work. The same month, I was told I had reactivated EBV by a naturopath and was advised to cut back my work schedule from 55 hours a week to 20… Ha! I’m sure you can guess how that went. I never saw that doctor again. I was too busy.

I had never been intimately exposed to chronic illness, so I was completely ignorant to the toll it could take on a family. I imagined it would be hard, of course, but you can never understand without experiencing it. Everyone in my family is healthy, even my extended family. We have our demons, but they’re addictions, mental health problems, typical old age conditions. I had my first major bout of angeoedema when I was 23 and went into anaphylaxis for the first time when I was 28. My siblings are all in their 30s and 40s and haven’t had more than the occasional cold. My parents are in their 70s and both still work and are active and social.

I was a sick baby. People would famously stare at the itty bitty girl with the old man’s cough. If I’d understood what could happen to a body, if I’d been less in denial, if I’d been less concerned about proving my bullet-proof toughness, I might have looked back on my childhood and my chest infections, thyroid disease, vasovagal syncope and all the symptoms that turned out to be mast cell activation disorder and tried to make changes to protect myself. If I’d understood what can happen to a body, I might have tried to nurture what was obviously a sensitive system, armour myself against external assaults and preserve what was still working. I could have eaten food that didn’t come from a restaurant kitchen. I could have taken a vitamin once in a while and stopped drinking all of my water out of cheap plastic bottles. I could have made sleep a priority, quit smoking and drinking sooner and not married a job that turned a run-of-the-mill control freak into a spread-too-thin obsessive perfectionist, trying to do all things, everywhere, first and best.

It’s been exactly three years since M.E. shuddered through my body and I wonder if I’ll ever stop thinking about the life that I lost that day. I would take all of my previous health conditions over this one. It was like a death: of my career, of my strong body, of ignorant bliss, and of our future dreams. I think about the months leading up to it — the blatant warnings of a body in crisis that I chose to ignore. There was a nagging voice in my head that pushed me to make a will, living will and power of attorney the year prior, at the age of 36. That same voice made me insist on a quickie marriage in the back garden after my husband and I had been together 13 years. I wanted him to be able to speak for me if I happened to be incapacitated and have legal recourse and rights if I died. I did everything I needed to do for luck: old, new, borrowed, blue, coin in my shoe… We signed the papers on the patio table and, half way back to the kitchen to grab our lunch, I remembered the last thing needed to insure we didn’t jinx our new life: he carried me over our backdoor threshold. We didn’t tell anyone because we thought we’d have a proper ceremony with friends and family in the next year or two — maybe in Ireland or somewhere exotic on a beach. It was exciting to dream up plans for a wedding after so many years together. That was 44 days before my Halloween sickness.

My life feels like one of those Choose Your Own Adventure books that I adored as a kid.

Move back to Ireland after college, turn to page 63 or drive across America to Seattle, turn to page 82.

Work your way up the restaurant corporate ladder, turn to page 103 or go to grad school for nutrition and dietetics, turn to page 123.

Jump in the lake in Virginia, just once, for only a few minutes, turn to page 146 or stay dry and don’t catch whatever is going to land you in the ER, wipe out your gut flora and set your immune system up for failure, turn to page 160.

Run into Walgreens on the way home from work and get a flu shot, turn to page 184 or keep on driving and live the rest of your life never having heard of myalgic encephalomyelitis, turn to page Happily Ever After.

I know, I know. You want to say it might have happened anyway. But it wouldn’t have. And you want to say I’ve got to stop ruminating over the what ifs and focus on the present. But it’s the Day of the Dead, a time to remember the dear departed. So, today, three years after the specter came to stay, I will think about the woman I lost that hallowed eve.

I’ll leave you on a happy note. November 1st is not only the anniversary of the first day of my new life with chronic illness, it is also the anniversary of my first born son, Bowie, arriving in our lives. ^^

September 1, 2014 by Elizabeth Milo

My Visit to Dr. Chia

Okay, okay, stop begging, I’ll tell you about my appointment with Dr. Chia. I can’t believe this took me so long to write, but I’ve been plugging away a little bit, day by day. I can save you some time and tell you straight away that it was not worth the trip. I don’t really feel like I learned anything new or found access to treatments I couldn’t have tried without him. That doesn’t mean I regret the trip, it just means, if someone else in my position asked my advice, I would say, “Save your money and your energy.” The journey, for me, became the challenge early on. I wanted to know if I could do it. I wanted to test my boundaries, I wanted to see if I could leave these four walls and find out just how bad the payback would be. It was also about testing a different location, spending time with my mother and giving my husband a break. So, I had a lot of different fuels feeding the engine, if you know what I mean and, without even one, I might not have made the trip. In the end, because I left early and Dr. Chia didn’t really give me anything, it was purely the challenge. And I’ve decided that is enough. It bolstered my confidence and reinforced how resilient I am — we are.

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With my mother outside Dr. Chia’s office.

Here’s what I thought about Dr. Chia before seeing him: I knew his son was sick with ME and recovered. I knew that Dr. Chia believes that enteroviruses are the root cause of this illness and that he has conducted studies that supported his theory, but the rest of the ME research community hasn’t taken up that torch and done bigger, better studies to replicate. I thought he would offer Equilibrant, his Chinese herb formula with which many people have had some success, and he might consider antivirals. My main impetus for seeing him was to get the testing that none of the other 40 doctors I’ve seen has done and also to see whether he thought I was a candidate for antivirals. Of course, I forgot to ask him about antivirals because I forget everything when I’m in a doctor’s office.

My mother holding the massive binder of test results that we carted down to California and then never opened.

My appointment was at 4:15pm on a Friday, so I was worried about rush hour and LA craziness, but Google maps was accurate and it only took us half an hour to get there. His office is in a nondescript brick building in a sort of strip mall in Torrance, CA. I’m a big fan of Stephen King and liked that the office was in an area named after the possessed protagonist of The Shining. 😉 The waiting room was barren. We (my mother and I) waited about 20 minutes and then went in and had the normal nurse stuff done. I noticed she wrote on my file that I was there about “chronic fatigue” and I mentioned that it was actually ME ~ or even write “CFS”. She said, “Well, it doesn’t matter because he only sees patients with your condition.” Sigh.

We waited probably about another 15 minutes for Dr. Chia and, when he came in, he was off like a rocket. He did not stop talking for an hour and 15 minutes. After about 10 minutes, he said I could record him, thank god, because I didn’t remember to ask and I have no memory of anything he said in those first few minutes. Dr. Chia was kind and pleasant. Not in any way intimidating or arrogant. I guess I would call him dogmatic without the ego. He seems slightly frustrated that nobody else realises enteroviruses are the root cause of so many chronic illnesses and told us many stories of other patients and studies that support his contention.

A few weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person about my illness, instead, he just ran down the list and discussed how my immune system had collapsed. I couldn’t help thinking none of this needed to be done in person since I was basically just a set of ears, but I know the law says I had to be there in the flesh. He also did a quick physical exam and neurological work up.

Here were his main points about my history:

As an infant, my immune system shifted into Th2 dominance with pneumonia and ear infections and asthma, which is an inflammatory disease. Instead of just fighting off infections with an increase in the Th1 branch of the immune system and then resetting back to equilibrium, mine shifted into Th2 and has been continually off kilter my whole life as it got hit by different viruses (bronchitis, ill while traveling in Central America, viral gastroenteritis from lake in Virginia etc. etc.). He gave an example of people who encounter the polio virus: just like the lake in Virginia, only a few out of hundreds exposed to polio will become crippled and the difference is the amount of gammaglobulin I (and others) have and my compromised immune system. He said enteroviruses are the second most common infection after the common cold and that viruses are often transmitted through water. He gave the example of Joseph Melnick at Baylor University who studied viruses that live in water from sewage contamination and spread to humans through shellfish, showers, colds and swimming. He also said the Russians wrote a paper that concluded the most common risk factors for contracting meningitis are swimming (30%), camping (20%), contact with sick people, and drinking well water.
Doctors repeatedly prescribed antibiotics for viruses and worsened my situation. The dark circles under my eyes are typical of this.
With Th2 dominance, comes allergies.
Night sweats are a classic sign of Th2 dominance ~ along with pain and sore throats, they are my immune system trying to fight off the viruses. But, “viruses are like weeds” and replicate exponentially. He said post-exertional malaise happens because activity causes viruses in the muscles to become metabolically active and replicate, causing pain. “The more activity you do, the more viruses replicate.”
Tonsillectomies are very common in ME because the body is fighting off the viruses and causing chronic sore throats (my early teenage years).
Vaccinations commonly cause ME and relapses (I took every vaccination I could get my hands on because I thought they were protecting me and didn’t realise they’re not for everyone).
He suspects a brain stem issue because of vasovagal syncope history, neck problems and dysautonomia symptoms.
He said that he has seen cases of ME caused by invasive dental work alone, so he thinks my history predisposed me, but having acute bronchitis, viral gastroenteritis, lots of dental work and then the flu shot all in the space of 3 months definitively tipped my immune system to ME. He said, “The flu vaccination is what did you in.”
My tender abdomen he said was my terminal ilium and that was typical with enteroviruses living in the wall of the small intestine.
He said I might have contracted new infectious illnesses in the past 3 years, but, whereas healthy people fight off viruses locally (i.e: facial symptoms with a cold), I fight it off systemically and all my ME symptoms flare. My mother and I heard loud and clear that contracting another virus would be incredibly dangerous for my recovery and my future health.
He said that there was a sewage leak into the lake at Incline Village in 1984, before the initial ME/CFS outbreak and that everyone got sick in the summer when they jumped in the lake. He said he is the only person in the US working on enterovirus research and he has found the virus in the blood and stomach lining of patients and has also done studies (injecting mice with enteroviruses and those that were initially immune deficient died). He said the CDC will soon be reproducing his work, he hopes.

Blood test results:

My T-lymphocytes are okay. CD4 is a little low.
Echoviruses, chlamydia pneumoniae, CMV, Creatine Kinase, IgA and CRP are all negative or within range.
Coxsackie B 4 and 5 are high. Type 4 is very high.
IgG (gammaglobulin) is low. All 4 subclasses. These are the most important antibodies to neutralise enteroviruses and maintain a healthy immune system.
HHV 6 IgG antibodies are very high.

Treatments:

He mentioned interferon, but said it is a very difficult treatment and short-lived.
He mentioned Epivir, an HIV drug that helps about 30% of the time, but didn’t want me to consider it now.
He told me to watch out for lakes, rivers, shellfish and not to drink the LA tap water.
He said I could try sublingual vitamin B12, coQ10, magnesium and vitamin D (all of which I take except B12).
The most important treatment he thought I needed was 5 – 15 grams of intravenous gammaglobulin to replace what I don’t have and modulate my immune system. He kept reiterating how much sicker I would be if I caught another virus, so he thought I should get IVIG twice a year and again whenever I travel anywhere (although, he said I probably shouldn’t travel). He wanted me to see an immunologist to get it, but it’s very expensive and the immunologist would want to inject me with a pneumonia vaccine to determine whether IVIG was necessary by my immune response two weeks later (I find this all very frustrating and wish that Dr. Chia could just give me a requisition form to take to a Seattle hospital so I don’t have to go through the rigmaroll of finding another specialist to determine that I need a treatment that this specialist says I need! It’s also frustrating because I won’t let a vaccine near me for the rest of my life and some random immunologist probably won’t take Dr. Chia’s word for it). If I can’t get IVIG, he said I should get 2 mililiters of intramuscular gammaglobulin, which will last for a few months.
He also gave me Equilibrant, his own proprietary blend of vitamins, minerals and herbs, and told us the story of his son’s recovery once he was taking 9 pills a day. He wants me to start on ¼ pill for a month, then move up to ½ for another month. I should expect an increase in my symptoms for 7-10 days. My problem with Equilibrant is that it has a bunch of fillers and crap in it: Dextrose, titanium dioxide, Yellow #5, Blue #2, Carnuba Wax etc. I still think I’ll try it, but I haven’t gotten the nerve up yet.

Honestly, the best thing he said to me during this whole appointment was, “You’ll get there.” He said since I’m so much better now than I was last year, my body is recovering and I just have to try to avoid getting another virus. After hearing Dr. Peterson say that he has never had a patient recover, it was nice to hear Dr. Chia say that I would get there…. I know “there” will not be where I was pre-ME, but I’ll take pretty much any there over here.

September 17, 2013 by Elizabeth Milo

30 Things About My Invisible Illness You May Not Know

Well, I’m a few days late (and more than a few dollars short). I’ve been working on this post for a week while not feeling well, but I’m determined to finish. Invisible Illness Awareness Week was last week and, in an effort to raise awareness, invisibleillnessweek.com has put together the “30 Things About My Illness” questionnaire below. The website offers support to patients and caregivers through articles, podcasts, illness lists and links to associations and resources. You should check it out!

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

Myalgic Encephalomyelitis. I have other conditions, such as mast cell activation disorder, thyroid disease, dysautonomia, hypoglycemia, IBS, dysmenorrhea, and chronic intractable migraines but these are speed bumps in relation to the Mount Everest that is ME. Undoubtedly, all these problems are connected in some way.

2. I was diagnosed with it in the year:

I was diagnosed about one year ago.

3. But I had symptoms since:

ME hit me one night like a freight train around 11pm on Halloween night, 2011. One hour I was fine, the next hour I was in the grips of what I thought was a very bad virus. Chills and drenching sweats lasted all night and… the rest is history.

Years before that, I had dealt with thyroid goiters, anaphylaxis and vasovagal syncope, but they were just blips in my otherwise healthy, normal life. ME changed that.

4. The biggest adjustment I’ve had to make is:

I could say losing my career, my social life, traveling, my income, the future I envisioned… But, really, the hardest adjustment has been a life with minimal energy expenditure: the loss of walking, running, talking exuberantly, emoting, gesticulating… I hate this still life.

5. Most people assume:

Most people assume I’m being antisocial. Most people assume that I worked too much, hit a wall and walked away and am just uncommunicative. Only my family and closest few friends know the extent of what happened to me.

6. The hardest part about mornings are:

The distressing, sinking realisation that I’ve woken up too early (and won’t go back to sleep) and had a bad night. Feeling dizzy before I’ve even opened my eyes. Being greeted with a headache and neck pain before I’ve even sat up.

7. My favorite medical TV show is:

House!! And any real life medical show like Trauma: Life in the ER. I’ve loved that stuff my whole life. They used to show real operations, graphic and unedited, on some show in Ireland when I was young and I loved watching. I’m not squeamish; I always thought I’d be working in an ER.

8. A gadget I couldn’t live without is:

My smart phone. It’s my lightweight connection to the rest of the world: news, blogs, emails, texts, photos, videos and calls. Plus, it has all my meditation CDs on it.

9. The hardest part about nights are:

For the first year I was sick, nights were lonely, terrifying, desperate, viral horror shows. There are not adequate words to describe what my nights were like. Now, the hardest part is the fear that I will not sleep well and will wake the next morning feeling worse.

10. Each day I take __ pills & vitamins.

I usually take about 26 supplements a day (double that for the number of actual pills). Currently, I’m on a vitamin and supplement hiatus, so I am only taking probiotics, magnesium, melatonin, Zyrtec, nasal spray, topical antibiotic cream, and a few times a week, when I have a headache or can’t sleep, I take Tylenol, Unisom, and Tizanidine.

11. Regarding alternative treatments I:

I have tried most of it: acupuncture, massage, craniosacral therapy, reiki, energy healers, meditation, breathing exercises, diet, stretches, Chinese herbs, supplements blah blah blagh. I don’t know what constitutes “alternative”, but I would do anything to get better.

12. If I had to choose between an invisible illness or visible I would choose:

I have a half-written blog post called “Visible Illness” because I look sick ~ or, at least, I look different than I used to ~ and I have caught myself feeling jealous of the “healthy”-looking ME patients I have seen online. However, my illness is invisible in the sense that nobody can see just how bad it is by looking at me ~ especially during the first year, when I pushed through everything to go to work.

Which would I prefer? Neither. Illness is evil and, ultimately, nobody can ever comprehend a sick person’s suffering, regardless of how bad they look on the outside.

13. Regarding working and career:

I never stop dreaming about my next career. I have a different idea every day. I miss working, I miss having responsibility and helping people, I miss being good at something, I miss having the security of an income.

14. People would be surprised to know:

Those that haven’t seen me in a while would be surprised to see that I have gone from an energetic, talkative, happy, demonstrative, busy person to someone who moves very little and doesn’t leave the house. Those close to me might be surprised to know just how black my blackness was this past year and how often I thought about suicide (it took all my guts to write that word. It’s shameful and scary, but true).

15. The hardest thing to accept about my new reality has been:

That I can’t exert energy. That’s it. It rules all else. I can’t find a new job, I can’t make plans for a different life than the one I had imagined, I can’t socialise or cook food or deal with banks or disability or do anything to adapt and move on. I only feel ok if I am flat on my back, not moving. But I keep trying to make progress and those endeavors always cause me to be in pain. And I’m intolerant to painkillers. So it’s a continual try-to-gain-ground-get-knocked-down cycle.

16. Something I never thought I could do with my illness that I did was:

Admit it – admit I was a sick person. Also, there was a time when I wondered if I’d ever laugh again. When the headaches ease up, laughter returns. It’s glorious.

17. The commercials about my illness:

There are none, but there are commercials about fibromyalgia and, of course, they show women able to move freely if they take Lyrica. Imagine the only symptom being achiness! Imagine a pill taking care of it! Sign me up!

18. Something I really miss doing since I was diagnosed is:

See this post. Dancing with my dogs on the beach, eating whatever I want, staying up late, talking nonstop, getting excited, getting angry, having a career, dreaming up future plans, driving myself places, traveling, having financial security… See the recurring theme?

19. It was really hard to have to give up:

I want to say everything in #18, but I’ll change it up and say getting dressed and feeling pretty. I miss a great pair of jeans and make-me-feel-tall boots and thinking my eyes look bright and generally feeling attractive.

20. A new hobby I have taken up since my diagnosis is:

Meditation. I couldn’t live without it now.

21. If I could have one day of feeling normal again I would:

Only one day? So not enough time to go to Europe? Can I plan this day in advance and get my loved ones to come to me? Ok, I’ll assume that’s a yes. Then I would get everyone I love to Seattle in advance and on The Day we would hike, talk, laugh, play games, eat a lot, get rip-roaring drunk, never have to rest and then sleep soundly, deeply, peacefully ~ without a cpap and with my husband and dogs.

22. My illness has taught me:

How under-equipped society is to help the disabled, sick and elderly. It is astounding and harrowing to realise how difficult and time-consuming it is to drive, park, get to a doctor’s office, get home help, get financial help ~ everything! And, when you’re sick, everything costs more, so what happens when you can’t work? I worry about old age all the time.

23. One thing people say that gets under my skin is:

When people say nothing. When friends don’t want to “burden” me with their own problems or don’t contact me because they don’t want to “impose” or don’t text me because I haven’t responded in days/weeks and they think the ball’s in my court or that they don’t want to keep “bothering” me. It is incredibly comforting when someone asks questions about my illness or vents to me about their hardships or gossips about work or continues to let me know they are thinking about me. Once in a while, I would love my husband (and family) to take a break from being the strong caregiver and wallow in a bit of mutual mourning: “This is so fucking unfair! We had dreams and plans! We had only just stopped living paycheck to paycheck! You were so alive and I am turned inside out to see your life force disappearing…” Maybe it’s selfish, but, someone else screaming at the sky would make me feel a little less alone.

24. But I love it when people:

Remind me that, even in this diminished capacity, I am still vital and worthy of being a friend.

25. My favorite motto, scripture, quote that gets me through tough times is:

“As long as you are breathing, there is more right with you than wrong with you.” ~ Jon Kabat-Zinn

Also, my mother once told me she had read that if you have one pain-free day, there is the possibility of being permanently pain-free. I think about this all the time on days like today: Just because I’m having a bad day today, it doesn’t mean I will always have bad days. There will be days again without headaches. There will be days when I can move more freely.

26. When someone is diagnosed I’d like to tell them:

You will improve. That was the first line of an email someone wrote to me and I didn’t read any further, I just closed the computer and wept. I needed to know that life could and would be bearable one day.

Also, I caution anyone recently diagnosed to not read all the horror stories about ME. It is good to raise awareness about the severity of this disease, but, after doing tireless research for months, my fear drowned out what my body was whispering. Stop pushing yourself, rest, listen to your body and believe you will improve.

27. Something that has surprised me about living with an illness is:

How many of us there are ~ in every country, of every age, ethnicity and socioeconomic standing. I am amazed and grateful for how many of us are online, sharing advice and giving support to each other. Sometimes, you lot are all that gets me through.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Not leave me. My husband, family and a few friends have wrapped themselves around me ~ physically and virtually ~ and given me the security that I have SWAT team back-up in this war.

29. I’m involved with Invisible Illness Week because:

I’m quoting Linds: “I think it’s a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.”

30. The fact that you read this list makes me feel:

Honoured. Or honored, depending on where you learned to spell. 🙂

Also check out my other blamily members’ answers to this questionnaire: Jess, Marie, Christine, Luminescence, Trisha… Who have I missed? Let me know if you posted this questionnaire to your blog and I will link it here.

Rag and Bone Shop of the Heart

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

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