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.

December 4, 2014 by Elizabeth Milo

Thanksgiving Tsunami

The last 10 days have been a bit harrowing. Different symptoms crashing down like waves each day. First let me tell you about our early Thanksgiving dinner with just the two of us.

Everything was made from scratch with the freshest ingredients. The only thing we didn’t do is grind the almond flour ourselves. Here’s what we had:

The turkey was pastured, free-range, organic, fresh (not frozen) from Rain Shadow Meats, our specialty butcher here in Seattle. They had 400 turkeys in a truck parked outside their shop and my husband tells me it was a chaotic scene picking it up. The smallest bird they had was 12 pounds and we didn’t want to store it, waiting for Thursday because of histamines, so we put it in the oven as soon as my husband got home. He roasted it upside down, so it’s a funny looking photo (and these aren’t the greatest photos becasue it was dark in our house):

I eat roasted root veg and mashed sweet potatoes and Brussels sprouts and other green veg all the time, so I decided, for a treat, to have a “stuffing” and cranberry sauce to go with my turkey, while my husband made himself potatoes and corn. The stuffing was based on Mickey Trescott’s recipe, but I left out the mushrooms and cranberries. I added fresh rosemary, parsley and a few cut up dried cherries for a zing every few mouthfuls. I also made a paleo “cornbred” (no corn in it, but it has that grainy quality from the almond flour) and added cubes to the stuffing becasue — stuffing without bread in it? Really?

The bread itself was delicious and I had a piece slathered in butter, while my husband got to eat those soft, squishy pull-apart rolls that I love so much.

I also made cranberry sauce from fresh, organic cranberries, fresh ginger, apple juice, orange juice and a touch of honey. I have never made cranberry sauce before and had no idea how easy it was. Why would anyone buy it in a tin?

The gravy was made from chicken bone broth, herbs and onions. You blend it with a hand blender and the onions thicken it.

All in all, it was a lovely meal and would have been even lovlier if we had been surrounded by friends and family and laughter and chatting.

Then the tsunami hit.

12 hours after I wrote my last happy, chatty post, I awoke from sleep at 3am, the sickest I have ever been in my life. I know there’s a lot of “sickest I have ever been”s in my world, but this truly was. Not once, in 3 years of ME, when all my worst symptoms happen at night, have I woken my husband to help me. Well, Sunday night, I had no choice. I crawled on my hands and knees to the toilet, shaking violently and drenched in cold sweat. Cold sweats are diffferent than the night sweats I experience. They are what happens right before I collapse with vasovagal syncope. So, it scared me. I thought I was going to lose consciousness at any moment and I was so parched I needed water asap. I crawled back to the bedroom and got my phone and woke my husband sleeping downstairs. He got me water, salt, my blood sugar tester, my blood pressure monitor, thermometer, charcoal and Benadryl. I didn’t know what was happening, honestly. How could this be a reaction to the healthist and freshest Thanksgiving dinner I’d ever had? What has happened to my body that I now react to anything random?

All my vitals were low, but not low enough to be causing the sickness. Once again, I felt poisoned, only this time I hadn’t taken Cromolyn or any other new drug or supplement. My gut told me it was the onion gravy. It was a lot of onions and I know I have digestive issues with raw onions. It could have been a reaction to the onions themselves or it could have been a form of sulfur poisoning. The meal was very sulfur-heavy and I know my CBS mutation* causes problems because it’s shown up in my ammonia, taurine and homocysteine blood tests.

Yes, when it comes to histamine, it could have been the small amount of orange juice in the cranberry sauce or the few dried cherries or, if you belive my nutritionist, the caulifower in the stuffing, but I don’t think so. I eat dried fruit every day and I’ve eaten an orange without problems. Besides, it didn’t feel like one of my histamine reactions. It was much, much worse. If it wasn’t onion/sulphur poisoning, I would say it was the almond flour. I have reintroduced almond butter, but not almonds themselves or almond flour.

I never got back to sleep that night and rested carefully the whole of Monday. After saying in my last post that no matter how I’m feeling I make it to see my physical therapist, I had my husband call and cancel our appointment that day. I ate like a shaky, poisonened sick person, trying to choose foods that would have the least impact on my body in every way, but this started the next symptom wave: blood sugar issues. I had rice, carrots, cucumber and sweet potato for breakfast. My blood sugar was 70 before I ate and 170 an hour after I ate. I had a chicken salad, parsnips, butternut squash drenched in butter, but stayed away from the chips and chocloate and broth I eat every day.

Tuesday, I was 2 pounds lighter — after one day of not eating the high-caloric crap I snack on to maintain my weight. And my blood sugar continued to crash. After years of hypoglycemia, I can usually feel the shakes when my sugar drops into the 70s, but it dropped into the low 60s a few times before I caught it. I increased my protein and starchy veg, I added olive oil, plantain crackers, fresh herbs and lots of pomegranate. I even had to go downstairs to the kitchen at 1am, after I had brushed, flossed and had my mouth guard in to cook up a beef burger and sweet potato. Exhausting.

Wednesday, I felt more stable, but very ME-ish: a bad headache and my spine and muscles felt infected and swollen.

Thursday (Thanksgiving) brought on the next new symptom wave: my blood pressure kept tanking alarmingly. No matter how much salt I ate or electrolytes I drank, with legs up and compression stockings on, it would not come up and stabilise. The best I achieved was 83/55.

My Riley always knows when his Mama isn’t feeling well. ❤

This continued on into Friday and, then, towards the end of that night, my whole body was in pain – joints and muscles – which I haven’t experienced in quite a while. My back and my hands felt arthritic.

Saturday, my blood pressure was better, but then came the sore throat and hoarse voice, making it difficult to talk. That night, I awoke 3 hours after going to bed with night sweats and never went back to sleep.

Sunday came a wave of neurological symptoms: poor cognitive abilities, worsening tinnitus, slurring my words, weak muscles, droopy eyes, my numb “buzzy head” symptoms (which signal I need to basically ctrl+alt+delete my brain immeadiately) and a cracking headache.

Monday, my throat and head pain had ebbed, but now it was my heart’s turn. It was hammering all day and fit to burst whenever I moved.

These last few days have been menstrual hell, which is generally an increase in my typical ME symptoms. I would honestly take all the other (probably more dangerous) reactions over the ME-inflamed, painful, exhausted days that feel like someone has pumped every muscle full of poisonous led… These are symptoms I can’t fight through. There is no remedy, no relief. They make me feel like I cannot go on living if they are prolonged and they affect my mood horribly. I can’t see the light at the end of the tunnel, and I get scared and weepy.

But, the good news is, today I’m stiff and crampy, but better, although the insomnia and nightmares have continued all week and I’m in desperate need of a decent sleep. I’ve been eating a very low-sulfur and low-histamine diet since the sickness that kicked this all off and am completely fed up with squash, lettuce, sweet potato and parsnip. My kindom for some kale! Never thought I’d say that. I tested the turkey, turkey bone broth and orange with no reactions. I tried the almond flour bread, but it was inconclusive (this time of the month caused confounding variables), so I might try again next week. I ate a lot of almond butter with no problem and, today, I had cauliflower (my first sulfurous veg in 10 days) with no problem. I still have to try the stuffing and cranberry sauce, but continue to suspect the onion gravy. Such detective work!

The even better news is, we managed to get out to the cemetery for half an hour to watch our pups run in the thin dusting of snow (yes, SNOW!) and, for that, I am truly grateful.

Onwards and upwards. I hope things will ease up until after Christmas.

*”Increased CBS enzyme activity would act to convert homocysteine more efficiently to cysteine, thereby lowering homocysteine levels. Ultimately individuals with the CBS C699T upregulation of the CBS enzyme can generate more sulfur breakdown products with potential sulfur toxicity issues, enhanced ammonia production, and a lack of glutathione.” ~ Dr. Amy Yasko’s book, “Genetic Bypass”

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

September 20, 2014 by Elizabeth Milo

Poisoning Myself.

Three days ago, after having Cromolyn Sodium in my cupboard for 19 weeks, I finally decided I was stable enough to add a new drug. Cromolyn was originally used as an inhaled anti-iflammatory to treat allergic- and exercise-induced asthma. The oral version of Cromolyn has been used more recently to treat mastocytosis and mast cell disorders. It is a liquid that comes in ampules and is mixed into water. The doctor who prescribed it for me is the same one that diagnosed me with MCAS, but he didn’t seem to know much about Cromolyn. The pharmacy knew nothing. I had to go online and ask the people in my mast cell Facebook group for details and then call the pharmacist and explain exactly what the drug was. I am so thankful for the knowledge of these groups and Cromolyn seemed to help far more people than it harmed. It also seemed pretty innocuous — I only talked to a few people who had major side effects and they were things I don’t typically experience, like itching and nausea.

Of course, there’s always a part of me that is looking for the magic pill. Imagine I started this drug and my mast cells calmed down and symptoms I didn’t even realise were caused by them disappeared! … But, it still took me almost 5 months to convince myself to take it. It wasn’t until my bowels went into hibernation that I decided to take the plunge. A few weeks ago, motility stopped, gastroparesis reared its ugly, bloated head and everything ceased functioning in my intestines. No movement, not even a fart, and mega doses of magnesium and vitamin C weren’t doing anything. Cromolyn can help these internal inflammation symptoms and I had high hopes.

The dose I was meant to take was eight ampules in a day — two 4 times a day. The doctor never mentioned to work up slowly and some people in my online group were able to start at full dose. I wanted to be careful because we’re talking about my ridiculously hyper-sensitive body, after all, but I was pretty confident that I’d be fine. So, the first day, I took 1/3 of an ampule in the morning. The next day, I took 2/3 of an ampule in the morning. All seemed fine, so, that night before bed, I took 3/4 of an ampule. At 5 in the morning, I woke up sick sick sick. So sick. Sicker than I’ve been in years, maybe. Sick like my original sickness. Malarial. Encephalo-. Shaking all over, chilled, sweating feverishly, head pounding, stiff neck, muscles cramping, throat constricted, barely able to lift my arm or walk to the bathroom. Oh god, the FEAR. I’d rather die than go back to this. I felt like an ex-con in a movie choosing death-by-cop rather than go back to jail. My mind was like a panicked, caged animal, looking for a way out, falling in and out of fever dreams where I was screaming for my mother over and over again. I’d rather the “nightly flu” that I used to get. I’d rather the ME monster that slams me down with massive, pummeling hands, but I now know will release me eventually if I hold very still for a while. I think I’d even rather be back in December, 2013, when I called on all of you angels to get me through what I thought might be permanent bedboundness.

I felt poisoned. There’s no other way to describe it. I took my temperature: 98.4 degrees. My blood pressure was 80/55 (normal for me). My blood sugar was 80. Not much I could do but wait it out. I lay in bed the whole day yesterday, meditating, deep breathing away the fear of permanent relapse to an acceptable distance. I have a painful burn on my hand that is taking a while to heal and I kept falling into dreams where the burn was causing sepsis. That’s what it felt like — a systemic infection — I’d wake up panting and quiet my mind. I’m good at doing that during waking hours, but, in my dreams… I’m always silently screaming.

I feel a bit better today, but still didn’t sleep. I haven’t had a headache in a long time, believe it or not, and the pain is brutal. My muscles are aching and I feel swollen. The fear has dissipated to frustration. I’m frustrated with myself for trying another drug. I was doing so well. I had a lot of firsts the last few weeks (I’ll post about that later, but here’s a teaser: first time in a store, first road trip, first time on a beach in two years!) and then I couldn’t leave well enough alone and trust that my body was slowly, but surely, helping itself. I’m frustrated with myself for not going slower. I could have ramped up the dose over a full month, but I’m always so impatient. I’m frustrated that I’ve lost the potential help of Cromolyn. That was probably the worst reaction I’ve ever had apart from anaphylaxis, so I’ll never touch it again. I’m not even willing to try again going much slower, so I’ll never know if it could have helped. And that makes me frustrated because it was so hard to get it and it’s incredibly expensive and it’s such a waste. I have a friend who can take it off my hands, but, if I ever wanted to try it again, I’m out of luck because I don’t have insurance to cover it anymore.

And, in contrast to how I feel now, I realise how well I was doing. I was managing to do things every day — stand in the kitchen and cook for an hour, have conversations easier, wash and dry my hair without a thought. This weekend we have one last stab at summer — two days of high 70s and low 80s — and I was going to surprise our friends Z and J by going to their house on Vashon Island for the first time in years. I felt strong enough to do it and that was not even an option 6 months ago. Instead, I’ll barely be moving this weekend. But at least I’ll barely be moving in the garden, in the sun.

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.

Rag and Bone Shop of the Heart

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

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