It's been a slow, SLOW climb. It was around December when I first began to believe I was feeling better by inches, but I didn't trust it. For a long time, I had a five-->seven day cycle - decent for three to five days, awful for two - and I could have a whole month of Sisyphean 'I think I feel better' until a crash brought me back down again. But by February, I was tentatively saying aloud that I was doing better and now, in April, I can say it with certainty: even though there are still rises and falls, my general trend has been upward for five months.
I attribute this to quitting my job, first of all. If I hadn't, I wouldn't have had the time to research how to take the best possible care of myself, for one thing. For another, teaching is an incredibly stressful sort of job, to the degree that only other teachers recognize. I'd think it was the ME talking except that my friends in the profession still say the same sorts of things about the job that I did. It has its brilliant moments - it really, really does - but you go through heartbreak on a day-to-day basis when you work with children, many of whom are at-risk.
Secondly, discovering the supplements I use (which has been the topic of a previous post) has helped me tremendously. That post was revised, by the way, after original posting, so you might want to take a look. The Vinpo and Antioxidants helped me become able to think again, the Healthy Feet and Nerves made me able to climb and walk again, and the Vitex made it possible for me to breathe and therefore sleep again. My sleep (mostly) smoothed out, and just having that again - just having a morning a month when I wake up and feel refreshed - has been like water to a desert.
Finally, dieting and dropping certain foods and additives has been helpful. I'm on a no-wheat, no-dairy, no-artificial-sweeteners diet. Far from feeling restrictive, this has actually been liberating. It has forced me to try new foods, cook more, and eat more fresh ingredients and less processed crap. I used caloriecount, an app that not just monitors your calories, but your vitamin and mineral intake, too - if you hit 'Analyze' and it tells you you're still low in iron for today, you take an iron supplement or add a big pile of spinach to your next meal. Its most valuable benefit to me has been to show me that I never get enough iron or calcium, I typically eat a little bit too much sugar (125% of my DV), and my metabolism is very slow. I can correct my deficiencies at the end of the day by picking the right supplement or before-bed snack.
So I shelled out the thousand-dollar plane fare and hotel fee and consult fee and (presumed!) testing fees with Dr De Meirlier with some trepidation. I mean, I can't say I'm getting better 'on my own' - that isn't the right way to put it. Rather, it's Better Living Through Chemistry. Lower stress, the right supplements, the right diet, drop 20 pounds and things'd look up for anybody. Am I healthy? No, but I am better.
I'm going to talk about Reno and give some general impressions of where to stay, how to eat clean, etc if you decide to go there. If you want to skip all that and go for the nitty-gritty, that's absolutely fine! Go to the section that starts 'appointment'.
Reno, and the Peppermill Hotel:
Reno: The Biggest Little City in the World.
I don't know how it is where you live, but after living anywhere but Nevada in the United States, it is really weird to suddenly see every fifth person on the street with a lit cigarette burning between their fingers, and other people behaving as though it's perfectly normal to blow smoke into their own personal bubbles. It's weird to see people smoking indoors at all, let alone in the same building as a restaurant. But Reno is shrouded - not in mystery, but in a constant haze of cigarette smoke.
Since a lot of people like us are sensitive to scents, and others, myself included, tend to have breathing issues, this is not just distasteful, but very unhealthy. Likely, it's very unhealthy for everyone involved - we just notice right away.
We stayed at the Peppermill Casino Resort, on a non-smoking floor. The air must've been on an entirely separate channel, because you seriously could not smell it (and I am extremely sensitive) - until our last two days, where some jerk (who took a room on a non-smoking floor!) decided to smoke regardless.
The hotel was beautiful and opulent.
View attachment 10545
The gorgeous design of the hotel and restaurants was belied, however, by the blandness and cheap quality of the food. On top of that, there was no microwave in the room, and the mini-fridge was so full of comically overpriced beverages that you could not put anything in there, yourself... so you had to eat what they provided. There was a pressure sensor so that if you accidentally knocked over one of the items - or one of the snacks off the countertop above them - you'd have to pay for what you'd knocked, if you didn't right it in forty-five seconds. I sniped at my mom for placing her keys on the pressure sensor - but luckily, we did not have to pay for her keys.
Finally, the hotel saddled us with an additional $17 for every day we were there, a $25 fee for the day we decided to go to the spa. When I asked what these extra charges were for, the staff replied "for amenities, like the free parking." Excuse me? If it's free, you don't pay for it, and we flew here. Since we were there for five days, this amounted to almost an extra $100.
So basically what I'm saying is, despite its number of stars, stay at the Peppermill and hotel/casinos like it at your peril. But if you have the energy and the means? Totally go to their spa for a day... I swear, it does not smell like cigarettes, although you'll have to walk through their reception area... which does. Instead, try the Comfort Inn and Suites by the airport... I think it's the only one of the cluster that's entirely non-smoking.
Eating Clean in Reno:
The best place my mom and I found was a lovely little restaurant called Great Full Gardens. They have awesome variety, and they cater to people who are healthy eaters and have very particular requests - if you ask them to 'make it gluten-free', they not only know what actually contains gluten, but they'll ensure that it's done, and done properly. Plus - and this is really unusual - there were dozens of dishes I could have chosen from and not asked them to change a thing. Everything mom and I ate there was fabulous, and we ate there more than once. This place is pretty close to the Whittemore-Peterson Institute, so it's convenient to eat there before/after an appointment, and they're open for lunch and dinner.
They serve good, clean food at reasonable prices, so they're usually pretty packed. I'd suggest showing up for lunch at 10:30 or dinner at 4:30 if you find you're easily overstimulated or if you just want to get a table right off the bat. Though they have enough tables that wait times are usually short.
Directly next to them is a cakery and a jus. The cakery has gluten-free, dairy-free cupcakes... if you can get to them. Like Great Full Gardens, they are very popular, and I only got one of these confections on my first time out. The cupcake was so good I could barely believe it had been made without gluten or dairy. If you have a partner with no dietary restrictions who enjoys their gluten and dairy, they make more mainstream cupcakes too! And the jus sells - well, juice - juiced drinks, parfaits, energy concoctions, and so on - and all of it is made fresh, right in front of you. Nothing is preserved or powdered. It's awesome, and their juices taste great.
Unfortunately, the cluster of hotels around the Reno Airport and this little oasis of awesome are not right on top of one another; rather, they're about 1.5 miles away. You can take a taxi or, if it's within your capacity, walk. I walked one day and had a crash. (I'm not that strong yet!) But depending on your activity level, it's really not that far.
There are some pizza places that offer gluten-free crusts as well, but none were close enough to the hotels to deliver.
Appointment with De Meirlier:
So now, the moment you've all been waiting for!
I've thought a lot about my appointment and what exactly to say to you guys and how to discuss it. I'm going to start narratively, and go to pros and cons.
My mom came with me and sat next to me. I was feeling pretty awesome that day, energetic and hopeful. We came a little early for the appointment, but the office was out to lunch, so we went back down to the first floor, ordered a beverage and sat around...
View attachment 10548
Finally, a few minutes after my appointment was about to start, we went back up, knocked on the door and were let in.
I was the only patient there; I did not encounter a patient leaving.
Mom sat inside. I filled out a bunch of paperwork and talked to the medical assistant and receptionist until De Meirlier was ready for me, which was another ten or fifteen minutes in.
Appointments are a half an hour. If you're anything like me, a half an hour really isn't enough time to actually discuss everything that's ever gone wrong with your body, even in brief, so I tried to give him the Cliff's Notes version: orthostasis, variable HR and BP, POTS or something like it, normal cortisol with low ACTH and low serotonin, brain fog, episodes of aphasia and even a few stroke-like and seizure-like episodes when my condition was at its worst.
Through it all, his response was the same: "totally normal". "Yes, we'd expect to see that." When he said this about the cortisol:ACTH issue, I was nonplussed. "What?" I said. "Totally normal? You're the first person to say anything like that - everyone else seems baffled by this!"
He replied, "you've built up that stockpile of cortisol over time, which what ACTH you could make." Since this had been one of my own theories, I agreed that this made sense, but then he added, "yesterday, I gave a lecture and part of that lecture was how this happens. The mechanism."
I affected outrage. "Well, how come I wasn't there?" And, "can you describe it further?" I half-suspected he had a handout of a powerpoint somewhere. After I've given a presentation, I usually have a few extra printout copies hanging around, especially if it's so recent.
But here he demurred: "I cannot, really. Not until certain studies are complete. It is not even entirely my research to share, because it's partly something some of my colleagues are working on."
"When will you be ready to discuss it?" I said.
"About six months from now," he replied.
And we moved on. No matter what I said, it was the 'perfectly normal' response. If I arched a brow, he'd add, "for your condition, of course." When I mentioned I wanted food allergies/intolerances testing, I told him that Mayo had memorably informed me that they didn't 'believe' in food intolerances. "Well," he said, "are they a hospital, or a church?"
Physical exam: he asked about my thyroid. "My thyroid numbers have been off once or twice, but they always normalize." He palpated the thyroid: "...it's not enlarged." Good - more or less as expected.
To my shock, he took his two fingers and shoved them up at the top of my spine, where the spine meets the skull. "This is where your pain is?" he said. YES, and I usually do the exact same motion to show others where it is located, and try to massage it away. I often describe that nuchal pain as 'congestion' or 'blockage', too. It is not like other types of pain I have experienced.
Then he examined my face: "do you always have burst capillaries there like that?" What? Burst huh? Oh - yes, I have kind of a flush across my cheekbones, but it stops directly where my dark circles start. It's much more pronounced in my mother, especially when we travel for some reason (maybe the differences in air pressure on the plane make tiny blood vessels burst, but I'd seen it described as a sun sensitivity reaction in those with Lyme and other, similar diseases/disorders). I said I was sure she wouldn't mind if he looked at her face, later.
Then he asked me to lie down and palpated my lower right quadrant, the appendix area. I practically levitated off the table. "There," he said, still moving his fingers over the area as he applied pressure, "do you feel that?" YES, I FEEL THAT AS PAIN. What I also felt was like a thick cord of scar tissue - a rope - that was infected/inflamed that he was agitating, rolling back and forth under his fingers. Maybe what I was feeling was the outline of the small intestine itself - no clue. Anyhow, he did that a few more times - for affect?! - while I did deep breathing and reminded myself that murder is not the answer. I tried, "ow" again, before realizing I had to be more explicit: "yes, I feel that, that's painful, now stop, please," which he did.
Brief visit to the Department of Backstory - I had an episode of terrible pain there in late childhood. My parents rushed me to the emergency room thinking it had to be appendicitis, but the ER doctors did NO TESTS and claimed, "it's probably gas". I remember being horror-struck at this answer, like this was totally normal, with a side of persecuted - there was an aura of 'kids - who knows what she swallowed' like I was a toddler. My childish sensibilities were offended. My poor older sister, who had fed me a tuna fish sandwich with mayo she feared had expired has blamed herself ever since, even though even at the time, I assured her that this didn't feel like a stomachache...
Then, this repeated in graduate school, but not for twenty-four hours... for a month. I treated it like an infection: no refined sugars - and I mean that - no fruit sugars, even, except for one piece of fruit a day - lots of dark, bitter greens and lean protein. No bread except for one piece of whole-grain per day. No milk products. And GSE, the 'herbal antibiotic', taken at liberal doses. I didn't even eat artificial sugars. I also massaged the area gently at night, and took warming herbs to increase circulation. After four days or so of hell (headaches, weakness, dizziness - basically what it feels like now most days) I began to feel better. I stuck with this strict regimen for about two weeks before allowing myself one square of chocolate per day, and then eventually one sugary coffee drink a week. I kept it up until the acute pain had faded to a background throbbiness that felt enough like a healing wound that I convinced myself I'd fixed the problem, or that the problem had fixed itself.
"Borrelia," De Meirlier said while I caught my breath on the table. "Probably Borrelia. I have seen these symptoms over and over again."
Although I'd had a worrying mark on me a few years ago that might have been a tick bite (and might not have been), I knew my problems with fatigue had started before that. It's not like I'd been bitten by a tick as a kid or a teen.
We went outside into the waiting room where Dr De Meirlier stared at my mother's cheekbones without explanation. "Hello," she said. "I'm Jaime's mother, Barbara."
"Hrm," he replied, and leaned closer to her.
My mom is an introvert who likes her personal space but hates being rude. She looked at me helplessly. "The doctor wants a look at this," I said, indicating my own cheeks.
My mom bore the scrutiny.
Then he moved to the front desk's computer to look at my MRI. "This is years worth of damage," he said. This was when I was able to slip in a bit more information: that I'd been to a neuropsychologist because I was worried about... "You don't need to worry about that," he said. "This has nothing to do with intelligence, but a failure of the parts of the brain to communicate." This was more or less what the neuropsych had said: that my intellect was in one place, but my processing speed was over two standard deviations lower. He had said, "...but since this is your first official IQ measurement, there's no way to tell if you've simply always had moderate ADD, or if you're losing your ability to focus."
De Meirlier showed no interest in what supplements I was taking, oddly. To me, that's been my most helpful diagnostic tool (perhaps because I don't have a lab of my own!) But seriously - when I took antioxidants and they helped as much as they did, I felt more confident that the problem at least in part oxidative. When I took a vasodilator (worried I was making a terrible mistake) I realized that my blood flow was sluggish not because my blood pressure was too low but because my blood was too 'sticky' or irregularly shaped (or I had vasoconstriction for some reason...) His attitude was that the supplements were of little worth. Since they've saved me from being entirely bedridden, I was less than impressed with this attitude, although I understand it to some degree.
De Meirlier then ordered a phalanx of tests, first inquiring whether my insurance would actually pay. I told him my insurance had been pretty reliable...
He opted to test my thyroid hormones anyway, along with some other vaguely hormonal stuff:
- Free T3 (Vrij T3)
- thyroid antibodies (anti-thyreoblobuline)
- free testosterone
- Vitamin D2 & 3
- IgG only - 96 General Foods Sensitivity Test
[Edit: researcher, enlighten thyself. I have SNP +/+ CD14 (rs2569191). This SNP and several others can affect your baseline levels of IgE. However, my SNP is significantly associated with naturally LOW IgE (n=3000s) and decreased susceptibility to allergies. CD14's job is in immune response - the 'good' side to my SNP is that I'm not automatically allergic to everything. The 'bad' side of that is that I might not launch as robust an attack against a bacterial invader. If you look below, you'll find that the doctor has tested me for CD14 to see where it is. Overall, this makes my high IgE seem a bit more problematic, unfortunately.]
- Proinflammatory cytokines (IL1B, IL-6, 8, and 10, IL12p70, TNF, TGF-B1, MIP-1B, MCP1)
- Perforin expression (NKC activity)
- Elastase expression (neutrophil activation)
- CD57 absolute count
- IMPH (Immunophenotyping: CD4, CD8, and CD56 determination)
- SCD14 (Soluble)
- C3A serum level
- C4A serum level
- Prostaglandin E2 serum level
- VEGF serum level
- D-lactate serum level
- nagalase activity (alpha-N-acetylgalactosaminidase)
Now, from the wee beasties division:
- Aspergillus niger IgG (Black Mold)
- Mycoplasma spp. & Mycoplasma pneuomoniae (causes atypical pneumonia - not sure why this is here)
- Anaplasma phagocytophilum (A tick-borne bacterium that causes human granulocytic granoplasmosis)
- Borrelia burgdorferi sl (Lyme)
- Bartonella spp. ('cat scratch fever')
- Midichloria mitochondriii (Yes, it is named after Star Wars's midichlorians. And it lives in and eats mitchondria. Seriously, officially the scariest microorganism ever.)
- Babesia (a malaria-like parasite)
- Yersinia (can cause 'pseudo-appendicitis'... oooh.)
- Parovirus B19 (Which causes fifth disease, which sounds nothing like what I have, but he was thinking about the ruddiness of my cheeks, I suppose. Or my blush. Whichever. )
- Tularemia (a lovely suppurating illness caused usually by contact with bunnies.)
Seriously, has anybody here been diagnosed with an infection of midichlorians?
"So, they finally found out what it is that has been destroying your life and livelihood!"
"....it was a fictional particle, actually..."
May I also say that since most of these can be / have been carried by ticks I am now MORE AFRAID OF TICKS THAN JUST ABOUT ANY OTHER VAGUELY AVOIDABLE DANGER IN LIFE?
De Meirlier sent me out with two different containers for my poop (yayyyy) and instructed me to come back the next day. Mom and I traipsed downstairs and talked about the appointment while we waited for our cab to return. My sad, sad little appendix was throbby, and I crankily explained that the doc thought it was probably Lyme, but that my problems had really been pretty gradual over a long period of time, and that possibly-a-tick bite was, like, a year and a half ago.
"But you were bitten as a child. When you were about ten - don't you remember?"
Apparently, I was bitten by a tick in late childhood. It was on my head, in my hair, and my mom found it and plucked it out. When she described it, I had that same, vague sense of it being true that one usually gets when one's parents describe a memory you were part of, but no longer fully remember.
Eurgh. Well, it's possible I got Lyme around about when I hit puberty, which may very well have obscured my problems! And that the 'appendicitis' episode was in its wake!
<--Start the previous series