March 19, 2015 by Elizabeth Milo

March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

Yay! Beach!

Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

December 14, 2014 by Elizabeth Milo

On the edge of nobody’s empire.

As I came into consciousness this morning and rolled over, before I’d opened my eyes, I felt the room tip sideways and then slosh back again. I tried to look at my phone to see the time and my eyes wouldn’t track properly. Like marbles rolling uncontrolled, I couldn’t make my vision focus on one point. And, in an instant, the fear collapses in on me, crushing my lungs, sucking all the air and hope out of the room. I wonder if the vertigo is caused by the way I slept – something physical tweaked in my neck – or my new thyroid medication that I started yesterday, or did I do too much decorating the tree? Was it the drop of milk in my tea? I wonder how long it will last and does it signal another relapse. Having the borders of my world change from the downstairs sitting room to the four walls of my bedroom seems immeasurably cruel. Facebook is a lifeline normally, but torturous today. Christmas cheer, family fun, laughing faces, out and about doing things, going places, making new memories. One friend is going to a play in NYC, others are going ice skating in Glasgow, and a photo of a pumpkin spice latte sends me over the edge.

Every day, every hour, that my headache isn’t too bad or my brain isn’t too muddied and labouring, I focus on a future where I may be able to leave the house, interact with friends, have time elapse without a constant focus on my malfunctioning body and precarious health. But, as soon as there is a shift – my sleep disappears, my muscles are poisoned, this vertigo tilts the horizon away from me with the slightest movement and the room spins sickeningly even while still – despair eclipses everything. I feel like I’m buried alive, dragging my fingernails along the wooden coffin, screaming at the top of my lungs, while people deafly live and laugh six feet above.

This is where I was this morning when Jen Brea posted this song by Belle & Sebastian. I didn’t know the singer, Stuart Murdoch, had severe M.E. I needed this today.

———————————————————–

As I was about to publish this post, my two dogs just got past the gate to the upstairs and both bounded onto my carefully kept-clean bed with muddy boots from tearing around the garden, barking at the passers-by. It is the first time that they’ve been on my bed in three months and it felt like how it must be to have excited children, brimming with life-force, jump into your bed on Christmas morning, holding fistfuls of treats that crumble all over the sheets and wearing smiles of oblivious delight. Yes, their visit caused my world to teeter-totter even more violently, but it also lifted the heartache a little. This too shall pass.

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

October 13, 2014 by Elizabeth Milo

Dear Family

September 22

Dear family,

So here’s what’s happening. I had that terrible reaction to Cromolyn, but it continued for a few more nights than I would have expected. I’ve never felt so sick and urgently needed to change everything in case something — anything — was contributing to this downfall. I was suddenly willing to take no meds or supplements, eat nothing, go bankrupt, leave the dogs, do anything to survive. I don’t know how to explain it. It didn’t feel like typical ME payback. It wasn’t my blood pressure or blood sugar or temperature, it wasn’t pain, it wasn’t my muscles… it was a feeling of system-wide poisoning. I realised it started the day after we got back from the coast (a dream come true, which I will blog about at another time), so I had to get out of my home, too, in case it was the cause. I wasn’t willing to stay one more night and risk being in the midst of whatever was poisoning me. It was that bad. It took me about one minute to make the decision. For two reasons: 1. If the house or the dogs were somehow making me sick, I had to leave immediately. 2. At the very least, I’m allergic to the dogs and getting away from them would help me heal and have one less assault on my immune system. Plus, Husband and I have talked about my staying somewhere else ad nauseum and always thought the first test would be in Seattle somewhere, it was just something that we hadn’t had the gumption to tackle yet.

My friend Erik, who has recovered through extreme mold avoidance, ~~bullied~~ encouraged me to not bring anything from my home — not my clothes, not a toothbrush, credit card, phone — in case mycotoxins were contributing/causing my illness and/or relapse. After arguing why I needed my own pillow, my sleep apnea oral appliance, my special food etc., I realised… No I don’t. My urine mycotoxin tests were high out of range. Eliminate all possible variables. Take nothing. Once I wrapped my head around it, it seemed like an obvious leap. I was leaving anyway, so why not go whole hog?

I found an AirBnB rental nearby that was able to have me check in last night. It’s not cheap, but it’s cheaper than a hotel and incredibly nice. It’s a brand new studio on top of a garage. New enough that I’m risking using their washer and dryer, but not so new that I’m overly concerned with all the Ikea cabinetry and new sofa and bed. It’s only available until Thursday, but it buys me some time to gain some strength and figure out what to do.

Husband, the selfless angel supporter, bought me a super-cheap tablet, so I could have email access, food, a few toiletries and a cheap outfit (leggings, sweatshirt). I stripped on the doorstep of the rental, left my clothes in a bag there and went straight in and showered. I have an emergency kit outside the door: epipens, benadryl, inhaler, blood sugar tester, glucose tabs, my phone and thyroid hormones.

Last night was rough. The sheets here are washed in smelly detergent which makes me sneeze and keeps me up at night (I know normal people don’t believe this, but, yes, the smell wakes me up over and over and makes me feel like I’m choking), so I’m going to wash the sheets and duvet cover today. Their pillows are for giants — prop your head at a 90 degree angle — so, I went pillowless and my neck is killing me today. I couldn’t get to sleep until after 2am and then I woke up constantly, of course — I have no cpap, no mouth guard for grinding, no ear plugs, no eye shades, no melatonin, no magnesium, no dogs — but it was better than it has been.

I spent the whole morning cooking, but I’m still starving and worried about losing more weight. I have no meat and no broth — my staples. I’m scared to eat chocolate and chips in case they’re contributing to how awful I feel, and it feels like breaking a heroin addiction. It’s a ton of work, washing, chopping, cooking, cleaning for myself, plus showering standing up…

Thank you so much for your generosity and support, family. I’m so grateful to not have had to run to the streets or, worse, had no option to leave and no husband to help. I’m not sure what my next step is. Go from rental to rental until I know whether I can return to the house? Or sell everything and get out? I don’t know. I’m scared to test anything right now. The reactions/symptoms I was having were too deadly.

Love you all so much. Especially you, dear husband. You give so much every day. I am so sorry this is ruining your life and dreams as well as mine. We have had such a rough time, but I will fight for us and our little family with everything I have. Every ounce of energy and every penny.

September 23

I’m not doing well. I spent all of yesterday on my feet and moving, which is crazy, obviously, but I’ve been so much stronger recently and I don’t have my typical payback muscle pain, so I’m not recognising the warning.

Last night was horrific. Drenching sweats, heart palpitations, hard to breathe, shaking, feverish without the fever, terrible head, this is all stuff I haven’t felt since the first year and a half I was sick. I’m worried that it is viruses rearing up, like Dr. Chia describes, and a catastrophic (what if permanent??) crash and I didn’t heed the warnings and stay still because I didn’t have my typical crippling pain and stiffness. I’m worried that I brought this on myself because I got cocky and stopped my preemptive rests. I’m worried that I just made myself much worse with so much activity.

September 24

Dear family,

Yesterday, I had a major breakdown. I’m horrified that I may have made myself much, much worse by not getting in bed and staying there, not moving. But I can’t tell you the level of hardship this puts on Husband — and myself! To shoulder the guilt and to have no sense of control over your life. Preparing my own food and taking care of myself may be making me worse right now, but it helps me feel less like a burden. But I’m very, very scared that this is simply ME and, in trying to help myself, I’m walking right into a much more disabled state.

I’ve been averaging about 3 to 4 hours sleep every night this week. Today I need to figure out where I’m going tomorrow. Now that I’ve started this, I can’t go home yet. I’m far, far too sick to be anywhere that isn’t pristine, pet-less, easy to maneuver around… My system (immune, nervous, lymphatic, methylation) is too precarious to detox any assaults. Husband had to remove the scented garbage bags from the rental yesterday.

Worst of all — honestly, it feels worse than anything — is the sudden removal from my dogs’ lives. I can’t even type that without crying. They are my guardians and have become so sensitised to my every breath, noise and movement. The codependence isn’t too healthy, but they’ve kept me company and kept me sane all these years. At least with human children, you can try explaining. I just keep imagining their confusion, knowing they run into my room every morning to cuddle. We have a routine. They will be neglected because husband and I are tapped out and that, more than anything , breaks my heart.

September 25

Very sick. Some things are better from not being home, reinforcing our choice to do this. Please trust me. Love you all.xo

September 27

September 28

My current rental didn’t work out (literally have slept an hour or two here and there for the last three nights) because it is so loud. The entire room shakes when vans/lorries/trucks go by and the person next door gets up at 4am and stomps around in what sounds like tap shoes on wooden floors next to the head of my bed. So, Z is coming from Vashon this morning to move me.

September 29

Dear family,

I know I need to rest more than anything. Trying to listen to my body is very difficult recently. The return of acute immune system-shifting symptoms has been terrifying and horrifically hard on my body. You’re all correct — I did too much that first day and made myself worse. But that wasn’t because I was isolated and alone or being heedless — I’ve truly been able to do all those things the past few months. I’ve been strong! So, I just misjudged the sudden drop off in my abilities and, like I said, didn’t have my typical warning signs to stop. It was a bad mistake. And so was working 50-hour weeks for 6.5 months after I got sick. And so was joining an exercise class and taking massive amounts of vitamin B12 all the other ridiculous things I’ve done that have made me worse over the years. It’s very hard to rest if you’re not physically maimed. Really. It goes against everything in my nature and I will always fail at it, it seems.

I think the hard part came when I spiralled further down after that first day and husband had to leave work to help me. And that was a double-blow because it came on the heals of his taking a week off of work for the coast trip. But, I’d never been in such a poor state. I may regret that he had to abandon a few days of work and we’re losing so much money (I already do!), but who cares about jobs and money when you’re writing an “if I die” email? Only hour-to-hour survival has been on my mind this week.

There are no words to describe the gratitude I feel that I have a family who cares, that there are people worrying about me and wanting to help. I never, ever take that for granted for a minute. I lost a lot of people the last few years and many people deal with this illness with nobody on their side, so I know how lucky I am that you care and want to help. So, thank you, THANK YOU for your thoughtful responses, empathy and for wanting to keep me safe. That, more than anything, is my overwhelming emotion: thankfulness that I’m not alone in this fight.

October 1

My current rental has mold in the washing machine, in the evenings the whole place smells like secondhand cigarette smoke from the landlords next door (I literally got wheezy — imagine all those years of working in the smokiest of smokey bars!) and the blankets on the bed smell so bad that I asked if I could get them laundered and the man said he had never had them washed before!! This all made me want to get the hell out, so I felt like I needed to give up and go home … I’m so tired… And Husband actually persuaded me to stay away (here or somewhere else). He wants more time to de-dog-ify the upstairs of our house, move out the furniture, bring the carpet to the cleaners etc. He thinks I should give this experiment a longer trial… I’d like to stay away until my night sickness and sweats totally abate because they are such an indicator of how bad I’m doing and then see how I do at home.

October 3

Dear family,

This new rental is great besides the moldy washing machine (again), but, interestingly, I have a stuffy nose and the electric shivers in my leg came back the first day here — both for the first time since leaving home 10 days ago. Also, I have a new and different drugged feeling here and joint pain has not eased up. But, I’m still planning to stay a week and the good news is my sweats/shivers/shakes stopped (!!!) after 12 harrowing nights and I got some relief from the complete bowel freeze of the last week. I reintroduced a few things from my house (food, apnea device, supplements) with no adverse effects. Actually, the malarial nights went away 2 days after starting to wear my apnea device again, but they also started while I was wearing it, so there is no correlation.

Yesterday morning, my ND sent out an intern to do a house call to take blood and do a hydrotherapy “constitutional” in my own bed. I don’t care what you think about naturopaths, there are no MDs making free house calls and spending an hour, so I want to win the lotto and pour money into this clinic.

My testosterone, estrogens, DHEA, TSH, free T3 and free T4 are all out of range low. Sometimes I honestly think this whole illness is caused by my thyroid being dead. Grave’s disease is evil and most people who have gone through radioiodine ablation are on MUCH higher doses of hormones.

Fingers crossed this makes me feel a little better. X

October 7

October 9

Dear family,

Ah, 6th rental is a charm. I kind of want to live here. The only downside is the bed is rock hard. I am so boney, have no muscle and have to deal with the fibromyalgia pain, so I really need plush bedding to not wake up in terrible pain. I’m force feeding myself. I get up, cook, eat, rest, cook, eat, rest, cook, eat, TV, sleep.

The first morning here, I woke up without a headache for the first time in a week, which confirms to me that something in the other rental was affecting me (and it started before I reintroduced Coconut Bliss ice cream and chocolate, so, thankfully, I have no good reason to continue to deprive myself of my sugar addiction ;)). I still have an achy headache, but it feels like it’s from a stiff neck and TMJ issues as opposed to a reaction to something. I increased my thyroid hormone and started a few supplements and low-dose Zyrtec. Feeling more stable.

Rag and Bone Shop of the Heart

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

Tag Archives: dogs

March Update

On the edge of nobody’s empire.

Thanksgiving Tsunami

November Update

Dear Family