The future might be the past…

I’m going through a rough(er) patch. My body is scaring me because I can’t find any cause for recent episodes. One of the good things these past few years, is that I can usually pinpoint a reason for reactions and downturns. Even after the last horrific night I suffered with apparently no reason (it was last November, during my Dad’s very short visit and I couldn’t blame it on overdoing it because I didn’t), I started spotting late the next day and–light bulb!–it was my period coming a week early (I can have terrible reactions on the day before or the first day of menstruation).

When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis.

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Then Saturday evening, my tongue swelled up for the first time in 7 months for no reason that I can figure out. I had tongue swelling a few times last year, but I could always explain it (dental work, sauna, vancomycin). Even more concerning, it’s still swollen now, 45 hours later and that’s very unusual. I took Benadryl the last 2 nights, squirting it onto the affected area of my tongue, as I’ve been told to do (this is also unusual for me–I am extremely judicious with Benadryl, only taking it when absolutely necessary) and the swelling still hasn’t resolved. I can’t remember another time it lasted this long — maybe, again, 17 years ago during anaphylaxis.

Then yesterday afternoon, I was hit with vertigo after spending too much time on my feet, preparing food. Vertigo is rare for me and is a big red flag. It’s very different from dizziness and I don’t think it has anything to do with blood pressure. I went to bed for a while, hoping it would resolve, but, when I got up, I was still slamming into walls, as if I were walking the hallway on a lurching boat. The last 2 times I experienced vertigo were 5 months ago during–shocker–my period and a year ago on the morning we were leaving for California, after killing myself the day before to finish packing. I thought it might be something to do with my neck, which always has issues, so I used heat, then my cervical traction device, then an ice pack. I think it helped; the vertigo had mostly abated by the time I went to bed.

But…

A few hours after I went to sleep, I woke up with horrible shakes and chills and drenching sweats. My BP was low (but low-normal for me: 80/50), HR was a little high, temperature was 96 degrees, and O2 was 95%. It was 7 terrible hours that felt viral, like when I first got sick, but was probably mast cells, what with the swollen tongue and all. I finally got up to do that thing that other chronically ill people might understand: put on clothes in case I had to go to the hospital. On a normal day, I might sit around in my dressing gown with unbrushed hair all day, but when there could be a chance I’m going to the hospital, I try to make sure I’m not naked. I also make sure I’m not wearing anything I care about — I’ve lost clothes in the hospital before.

Strangely, I had almost an identical episode on this exact day last year. Here’s a screenshot from my calendar:

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After the most stable autumn and winter I’ve had since being sick, this downturn–this piling on of relatively rare, red-flag symptoms–scares me. My sleep has gone to hell in the last few weeks, which compounds everything by stealing energy and increasing pain. Plus, I’m exacerbating things by holding tight to my “best winter yet” narrative and by fighting so hard to maintain the level of functioning I’ve had this past year, rather than pulling way back and resting aggressively.

My ND says the naturopathic philosophy is that you will go back through previous stages of health and experience earlier symptoms as you travel the healing journey back to where you once were. I’ve latched onto this theory to anchor myself and dispel some fear. The resurgence of all these old symptoms means there has been a shift in my system — but maybe it’s a positive shift, even though it doesn’t feel that way. I’ve gained weight since starting IVIG, over 8% of my norm, which is not insignificant, especially on someone as small as I am. I’m at my heaviest since being sick and, although I’m not overweight, I’ve lost muscle tone the last 7 years and I don’t have the physical ability to burn fat and build muscle, so I hope this trajectory doesn’t continue. My doctor thought this, also, pointed towards a shift in my body: maybe I’ve started absorbing nutrients better. Acne is coming back a little, too. Maybe my hair will grow back! Or the next thing will be that I’ll catch a cold for the first time in 8 years… (And because I really don’t want this to happen, no matter what it might indicate about a calming immune system: knock on wood, toba, toba, spit over shoulder: patuey.)

But, as I lie here, shaky, with my swollen tongue, chronicling these last few weeks (minus the osteoporosis diagnosis and extremely elevated post-antibiotics SIBO test results, both of which I’ll have to write about at a different time), none of it feels like a positive shift and I worry about what I should eat so as not to add to mast cell reactivity and whether I should stay in bed and lie still, even though longed-for Seattle sun is streaming through the windows and I’d love to make some breakfast and sit at my table watching Riley lounge in the grass, soaking up the rays, and the hummingbirds diving around our feeders.

SIBO Antibiotic Failure in Half a Milliliter.

Referring to my last post:

I am devastated. But allow me to give you some backstory, so you understand my emotional reaction to a failed drug trial. It took me a year to try the SIBO protocol, but, during that year, I wasn’t just sitting around, waiting to get the nerve up — there was so much time, energy and money invested in procuring the safest and smartest medications for me.

Initially, Dr. K wanted me to take the two gut antibiotics without having the SIBO test, but I asked if I could do the test first ($180) because I had been negative for SIBO a few years ago. The preparatory diet was brutal for me this time (when I did it in 2014, I don’t remember it being a big deal). I had to eat only meat, eggs and rice for two full days because of my chronic constipation and it made me very sick and weak, nauseous, hungry and shaky. During the test, I had a massive blood sugar crash, but you’re not meant to eat or drink while collecting breath samples, so I waited too long and got more and more hypoglycemic, finally giving in to apple juice, but the whole experience took a toll. So, there was that.

Then there was the energy involved getting the Rifaximin: Asking my doctor to send in a pre-authorization, getting refused, sending in an appeal, getting refused, a third party appeal and refusal — all of this taking so much time in between each step. Calling around to pharmacies to see if there was anywhere that sold it for less than $1,500. Not wanting to buy the generic for $200 because it has colourings that I avoid. Asking my doctor to send a sample of the tablets, so I could try them before buying them. Waiting on that sample to arrive. Waiting for a good day to try it — a day I felt strong enough with no other conflicting variables like a migraine or a day I was doing my infusion. Calling a pharmacist to see if I could cut the tablet (they said no because it’s enteric coated to stay in tact until it reaches your gut), but cutting it anyway because I have to start with a sliver and the worst that can happen is it’s not effective and who cares? — this is just a test. Taking bigger and bigger slivers over the course of a week. Deciding it’s okay and safe to order from the online pharmacy in Singapore and, because so much time has gone by and it takes another 2-4 weeks for delivery from the time of order, having it sent to our California address.

In the meantime, once I knew I wouldn’t react to the Rifaximin, I started calling around about the Vancomycin (because I’m meant to take them concurrently). I called so many compounding pharmacies, so much time invested, taking notes on brands, ingredients, prices, my options for liquids or capsules. Then, when I had found the cheapest ($200) and most competent-sounding pharmacy, I consulted with the pharmacist over and over about the details: first, about ingredients (no flavourings, no preservatives, compounded only in sterile water). Then about the timeline, explaining that I couldn’t start at full dose, that it would take me a few weeks to titrate up and is there a way to prolong the 2-week shelf life? He said he could freeze it, extending the “discard by” date from 14 to 90 days. Then we brainstormed some more and decided to freeze it in 4 bottles, so I only needed to defrost one at a time, keeping the others preserved. Then he said he should make it at the last minute, to keep it fresh as long as possible. My husband drove across town on the day we were leaving for California to pick it up. I kept it in a cooler with ice packs during our road trip and managed it like a bird on a nest: tending to it, moving it out of the sun, re-freezing the ice packs each night. And then, once we were here, I just waited for the Rifaximin delivery so I could start them both together.

So much goes into this sort of thing, aside from the $580. Not to mention my hopes. For all my fear of repercussions, once I decide to do something, I put nothing but a positive and excited spin on things. Taking antibiotics for the first time could be a game changer — like antivirals have been for so many. I’ve never addressed my gut and I certainly don’t have a strict diet, so there’s hope for positive change there. What if my brain symptoms are better and my sleep is better and I don’t have to do enemas anymore? I am an expert at swallowing something and forgetting about it, so I’m not nervous or over-analyzing my body. Down the hatch and that’s it. Don’t pay attention. But last night the Vanco got my attention.

My prescribed dosage is 30 ml a day. THIRTY. Last night, I took 0.5 ml. HALF A MILLILITER. Soon after, something started happening in my throat on the left-hand side. Then my tongue started swelling on the left. Then a headache on the left. And, finally, heart palpitations. My tongue got bigger and bigger. I was dumbfounded. If I were going to react to anything, I thought it would be the Sunset Yellow generic Singaporean Rifaximin, not the sterile water vanco that Kyle the pharmacist put so much care into!

Dumbfounded and devastated. For me, tongue swelling is as scary as it gets because it is the precursor to full-blown anaphylaxis — especially tongue swelling with head and heart involvement. The mast cell meltdowns that I experience in the night, with sweats and chills and poisoned feelings, are much worse physically, but not as serious as tongue swelling. Not as scary. All of my anaphylaxis ER visits involved tongue swelling. It’s something that can get worse quickly. So, how do I get the nerve up to try the Vanco again? Are all those frozen bottles of medication a loss? That’s what made me start crying. Not the time or money or hopes dashed, but the thought that I can’t try it again. It’s not like my hydrocortisone success story; I can’t push through. Next time, it could be much worse, like your second bee sting. My control is taken away. Even if I wanted to try again tomorrow… I can’t risk anything even akin to anaphylaxis. It’s the trauma I will always carry. If I spontaneously recovered from ME today, I would still carry the fear of anaphylaxis with me for the rest of my life, like a brown recluse spider, hiding in plain sight, threatening sickness and death when you least expect it. Damn.

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Update: A Google search shows me that people take Rifaximin without the second antibiotic. I inferred from my doctor that they had to be taken together, but maybe not. Maybe all is not lost for treatment.

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Another update: One long bath, one meditation and a good conversation with my husband later… Feel much better about the whole thing. He’s so good at saying, “don’t think about the money, let it go” and “it’s just a drop in the bucket of the last 6 years” and “move on to the next thing” and “you’re doing okay, you’re not bedbound, you’ve made improvements without this treatment.” And then I look at the vast desert sky and envision the stars and universe beyond and think about how small I am. And how lucky I am. My tongue swelling resolved with Benadryl last night and today I’m eating ice cream next to my dogs in the sun, listening to a cacophony of birds nearby and coyotes howling in the distance. 

Medication Wars: Treating SIBO and Low Cortisol

13 months after my California doctor wrote the prescriptions for two gut antibiotics to treat SIBO, today is the day I have to face the music. I’ve put it off for this long out of fear: Fear of a mast cell reaction (Rifaximin ingredients: Sunset Yellow FCF, ffs); fear of no reaction, but feeling terrible from die-off (we just arrived in the Cali desert for a month, so it’s really fear of destroying my idyllic get-away); fear of altering my microbiome for the worse, rather than the better (causing more of a candida flare, causing C. diff etc); fear of spending the money, but not not being able to take the medicine (each one was $200!). Also, although the SIBO test was “off the charts” (in my doctor’s words), I don’t have the symptoms, so fear of messing with the gut I know and creating new issues. I haven’t taken an antibiotic in almost a decade–well before I got sick–so, there’s fear there, too.

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But I see my doctor later this month and I’m determined to do the treatment before I see him. I now have both medications in front of me, money is spent, no excuses. One of them is compounded in sterile water and needs to be thrown out in a few weeks, so I’m starting now, with one drop, as soon as I stop typing… which, of course, makes me want to keep typing, keep putting it off, what else can I tell you…?
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Okay, I’ll quickly tell you a good drug story, which will bolster my confidence. The first medication I was ever prescribed after getting sick was hydrocortisone. The pharmacist said, “If it gives you a headache, let me know.” It gave me a whopping headache and, back then, I didn’t understand my reactions and how I have to start at micro-doses–I didn’t even know you could cut a tablet or open a capsule–so, I just stopped taking it after two days. The ND said she presented my case to her colleagues and everyone said, “Yes, hydrocortisone!” but it was my first experience with an ND and perhaps I didn’t fully trust her, but, more so, I didn’t want any worsening symptoms, so I just stopped going to her. That has been my MO thus far: try not to rock the boat, except very gently, over a very long period of time (and, by the way, for the most part, I have improved over the years (knock on wood, toba, toba), which has reinforced my careful tendencies).

Last year, my California MD Rxed hydrocortisone again. I tried an 1/8 of a tablet in August and felt short of breath, so didn’t take it again until 3 months later. Then I was spurred on by a receptionist at a doctor’s office who started crying (!) on the phone to me while talking about her daughter who needs hydrocortisone all day long, so I tried it again. It went okay for a few months. Then one day it made me feel gittery, spacey and short of breath again. Then, a few weeks after that, it hit me like a freight train. I wrote in my calender: “Shaky, drugged, agitated, buzzy muscles, feel like I’m on speed, then possible blood sugar crash (or maybe just still shakes from hydrocortisone). Then, after hours, a dull obvious-reaction headache and stuffed ears.”

This is what used to happen to me with antihistamines: I’d handle them for days and then, without warning, the same dose would send me into a scary cascade of anticholinergic symptoms (I still mourn the loss of Unisom, which helped a lot with sleep for a while).

But, I persevered with the hydrocortisone (yay, me!) and, last month, something clicked, I could feel it help my body. I can feel the uptick in energy and the decrease in brain symptoms. I give hydrocortisone full credit for getting me through the weeks of packing for this trip and those back-to-back high-step count days. Each morning, I marveled: I’m not bedbound, I think I can do it again. I have no side effects now and I might even try more than a 1/4 tablet. 😉

Body’s in Trouble and SIBO Test From Hell.

I am going to document this swiftly before the whole horror fades under the sweet joyous glow of sugar and carbohydrates. Besides the first few years of this illness, which has its own special place in the Hell Hall of Fame, the last few days preparing and preforming the SIBO test might have been the worst 50 hours of my life. There are 2 close seconds: the aftermath of a lumbar puncture, which gave me the 10 on my pain scale to which I compare all else, and a particularly harrowing bout of food poisoning, which I suffered alone on my brother’s bathroom floor for a few days, thinking I might die. But this weekend was worse than both. But let me back up.

My symptoms have been bad since coming back from California, particularly the last month. Immediately after our return, I had to contend with my period, which heightens everything a notch, including emotions. My husband went straight back to work 7 days a week to catch up with his landscaping jobs and the renewed isolation, plus being trapped indoors because of the chilly, damp weather began to take their toll very quickly.

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A week after getting back to Seattle, I got the tests done for Dr. Kaufman (the California doctor at the Open Medicine Clinic). I had 39 vials of blood taken in 2 days — the first day, we did 9 vials, but my blood sugar crashed, so the second day we went back downtown and I did the other 29 vials. I completely underestimated the toll it would take. That evening my blood pressure tanked and I didn’t feel good. It took a few days for the effects to wear off. Just in time for family to come over for my birthday brunch, which caused a bad (but short-lived) crash (I already wrote about this last month).
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Two days after that, I started to get a throat thing… one of those feelings that, in my old life, would have made me think I was getting sick. The last time I was sick — normally sick with a cold and bronchitis — was almost exactly 6 years ago. That boggles my mind. It is, of course, because I probably have immune activation, but it is maybe even more about being housebound, wearing my mask when I go to appointments in the winter and not letting sick people come into my house. So for 3 days I felt like I had strep throat, was completely couch-bound, stiff, sore, swollen and had a tight chest just like it used to feel before I got a chest infection. For 2 nights I slept over 8 hours, which should tell you right away I was being beat down by something different because I’m lucky to ever get more than 6 or 7 hours sleep. These symptoms of acute sick on top of chronic sick scared me. I have read so many stories of relapses and crashes caused by a common cold. I haven’t had any lung issues since the first year of this illness and, as a previous asthma/bronchitis/pneumonia sufferer, I am incredibly thankful that I don’t contend with those symptoms. So, I hit it with every tool in my virus tool kit, including IV fluids (so brilliant to be able to hook myself up to fluids; see my first time here) and it didn’t progress to a full-blown cold or flu.

The day I started to feel better, I did an immunoglobulin infusion. From that day on, I’ve had a headache. It has waxed and waned over the last 3 weeks, but yesterday it was in the top 4 worst headaches of my life. More on that in a minute. I’m not finished with the litany. A few days after the infusion, I stopped taking all of my vitamins, supplements and even prescriptions that aren’t essential. I needed to come off my candida treatment for 2 weeks before doing the SIBO test, so I just stopped everything. I thought this would be a good break, but in retrospect, perhaps it contributed to this past Very Bad Fortnight.

One thing I did not intend to discontinue was my hormone therapy but my doctor refused to call in my compounded progesterone prescription because I hadn’t seen her in person in 4 months, so I had to abruptly stop it in the middle of my cycle. Maybe it’s no big deal, but I’ve been taking it for years and it regulates my periods and calms my reactivity, so messing with my body and, more importantly, the difficulty dealing with my doctor caused a lot of stress (I didn’t want to see her until I had the test results back from the 39 vials of blood, so I implored her to extend my Rx, but it took her too long to answer and my period decided to come and then she only called in a few to tide me over until our appointment, but they wanted to charge me $2.50/capsule for such a small order, so I just went to see her (there was no discussion of my hormones and no changes made, so withholding the refill felt like blackmail to get a very sick person to make an appointment). Then it took 3 more days after our appointment for her to call the progesterone into the pharmacy… so I was ultimately off of it for 2 weeks. Sigh).

Speaking of my pain scale, the week before last I had a bowel spasm that was a 9. My first 9 since The Evil Calcium Headache of 2012. I have experienced a lot of bowel issues in my life — just the day before this spasm, I had experienced such vicious heart palpitations during an enema, that I thought I might collapse with vasovagal syncope — but I didn’t know this sort of pain was possible in the bowel. From an internal muscle spasm?? Seems far-fetched even now, having experienced it. It only lasted about 5 minutes, but for that eternity I couldn’t move from the bathroom floor where I had crumpled, I could barely breathe, I was making some weird, uncontrollable, primal, guttural, airless moan. If it had gone on a few minutes longer, I would have called an ambulance and probably would have agreed to morphine, even though I’m allergic to it. As soon as I was able to crawl, I did a castor oil pack and heating pad and the spasm eased up. The aftershocks and inflammation continued for days, however…

Right up until my period came and my chronic headache became a chronic migraine. The old kind that has me wincing at every noise and squinting at every light. The kind of headache that makes it difficult to move my eyes, like the extraocular muscles have swelled taught with inflammation. The kind that infects my neck and spine, so I can’t turn my head, bend over, cough, sneeze or poop without whimpering in pain. The kind that causes nightmares about loved ones getting their skulls bashed in and destroys sleep with constant throbbing wakings. The kind that causes my stomach to flip with every smell and my poor husband: “Please don’t put your foot down so heavily on the floor.” “Please don’t ever use that shaving cream again.” “Please don’t sharpen that knife or stir that pot.” “Please don’t smoke that cigar out on the porch because it sticks to your clothes.” … etc. I became very weak over the next few days, like the life-force was drained out of me. Muscles not working, hard to converse. This is a completely different feeling from my typical exhaustion or heavy muscles. This is how I imagine it feels if someone is on the ground, bleeding out.

And then, just like that, a depression switch was flicked in my brain. I’ve only been really depressed twice before, the worst was the winter of 2013 after I’d gone steadily downhill for 2 years and spent most of my time in my bedroom in pain. This episode wasn’t as bad as that — I am sustained by a bit more hope these days because I’ve had some staccato ups punctuate the continuous downs — but it still sucked. I’ve cried every day and had very black thoughts. The relentlessness of my symptoms have highlighted the improvements in California, making me terrified of what it means for our lives if my environment is keeping me sick. And the interesting/engulfing thing about depression is, it doesn’t matter whether you rationally know that things will be better on a different day or could be better in a different location, you still want to give up and end it all. Nope, can’t do this anymore, I’m too tired. And when that Black Cloud of Despondency starts to dissipate, like it has today (oh, thank god, please stay away), it seems ludicrous and selfish that you had those dark thoughts.

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SIBO prep meal

But let’s get to the crescendo… The last 50 hours… The prep for the SIBO test… If I was ever in doubt that my body doesn’t do well on a low-carb diet, this weekend proved it. It feels miraculous that I’m able to sit up and type right now, honestly. On top of bad physical symptoms, little sleep, no supplements and sadness, I started a 48-hour prep diet for a SIBO test ordered by Dr. Kaufman. SIBO stands for small intestinal bacterial overgrowth. I’ve done the SIBO diet and test once before and don’t remember it being very difficult (aside: my post is here and you can see that the National University of Natural Medicine has stolen my food photo for their website here, which I find highly amusing). For the prep diet, you are only allowed to eat meat, eggs, white rice and fats for 12 hours and then 15 hours of fasting, which doesn’t sound too bad except, if you are constipated (or in my case, the most constipated person I’ve ever met), you have to do the diet for 2 days before the fast. I eat all day and night — it steadies my blood sugar and maintains my weight — and, although I eat meat every day, I don’t eat a lot and I only eat about 2 or 3 eggs a week. So, this was hard. Friday night, I stopped eating at 1am. I was hoping I would wake up Tuesday morning without an appetite, which often happens in the mornings, but no luck, I was starving. I ate a scrambled egg with turkey. A little later I ate some rice and butter. Then chicken breasts. By the time my husband made some “meat broth” (no bones, cartilage, herbs or veg allowed), I was very nauseous — which is unusual, I have an iron stomach — but still hungry because I couldn’t physically choke down enough meat to fill me up and too much white rice without sufficient veg and starchy carbs causes my blood sugar to crash because of reactive hypoglycemia. The nausea was exacerbated by pain throughout my body, a pulled muscle in my back and my migraine ratcheting up. If I hadn’t prepared for this test for 2 weeks already, I would have thrown in the towel and taken steroids, acetaminophen and an antihistamine, but I had to shudder through it.

Yesterday was indescribable (but I’ll try). I woke up with my brain swollen, neck stiff and head shattered. It felt like that lumbar puncture headache: I had to be horizontal to function. And, of course, I was starving. The smell of the meat broth almost made me vomit. My arms shook as I force-fed myself an egg and turkey. Later, I ate beef stew meat and rice, but, again, not enough to fill me. I just couldn’t get it down. I spent the whole day in a weak ball on the couch. My husband had to half carry me to the loo because whenever I sat up, my limbs started shaking and I broke out in sweats. This was more than hunger on top of a migraine. I googled meningitis and encephalitis symptoms and actually considered going to the hospital. I’ve managed to stay out of the emergency room for the entirety of my illness, so I don’t consider it lightly. But, really, what could they do? IV fluids, which I can do at home; a spinal tap, which I’ll refuse; a brain CT, but I’ve had way too much radiation exposure in my life; an MRI, but I’ll refuse contrast; a blood test, which will be negative. So I stayed put. And, besides, I checked my blood sugar, blood pressure and temperature and, inexplicably, everything was stable. Actually, this made me a little more scared because I like having a reason for abnormal symptoms — something I can fix. The entire day, I kept saying to myself, “You’ve come this far, just 20 more hours… 15 more hours…” I couldn’t stomach anything after 6pm and I finally got to sleep at midnight, but woke up at 3:30am and 4am and then every hour, feeling sick and in and out of dreams about food. I got up at 7am and my head felt a bit better, but I was so emaciated and weak (I lost 3 pounds in those 2 days and I didn’t have 3 pounds to lose).

For the SIBO test, at least an hour after you wake up, you drink a lactulose solution and then take a sample of your breath every 20 minutes for 3 hours. Only 4 more hours. My kingdom for peanut butter on toast! It was torture. I was breathless and, with every movement, my heart rate skyrocketed. I’m not sure why I have to eat so much, so often, of so many foods in order to feel like my muscles and organs — even my cells — will function. It could be thyroid related: my metabolism is still revving too high. But then the icing on the cake … No, the cherry on top of the icing… The pièce de résistance of the whole month de hell: An hour after drinking the lactulose solution, my body responded how it always does to a shot of sugar without a meal chaser: my blood sugar crashed. No, no, no… We are in the 11th hour, I have been off supplements, I have gotten through the prep diet, please, body, do not fail me before I complete the test. I sat very still, tried not to expend energy, willed my pancreas and liver to do their jobs and release some glucose, but the shakes and my hammering heart… It was too much. I thought I might black out getting the phone to call my husband, my words were halting and stuttered, my vision tunneled as I tested my blood sugar. It was 57 and I was getting worse, I had no choice but to drink some apple juice. After only 3 ounces, I could feel my body stabilise. It was like those starving Naked & Afraid people who feel energy flood back into their bodies after eating a minnow (if you don’t watch that program, what are you waiting for?). I’d last about 3 hours on Naked & Afraid.

An hour and a half after the hypoglycemic crash, I got diarrhea. For someone who hasn’t moved her bowels in over 2 years without an enema, this is a big deal — body’s in trouble. I finished the SIBO test and wrote a note that I had to drink apple juice and all I can do is pray that they can glean something from my samples. As soon as I blew my last breath sample, I drank a huge mug of proper Irish tea with milk and ate a piece of banana bread. I moaned with every sip and bite. Potable, edible life. Then I ate a seed bar, some nuts, some melon. And then half an acorn squash and half a head of steamed cabbage. And an oatmeal raisin cookie. Now I’m sitting at the table for the first time in about 10 days feeling very grateful for no shakes, my normal-level pain, the food in my belly and the energy available to write this. I don’t even care that my churning, bloated, gassy bowel probably means I have SIBO and will have to take antibiotics. All I know is I will never do this test again.

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Move over, Good Doctor, there’s a new team in town.

After a year and a half of regular visits, I have broken up with the Good Doctor. She was a lifeline when I first started seeing her ~ somebody who was willing to stick with me and give me diet and supplement help when every other doctor had only offered painkillers and antidepressants and sent me on my way. However, I have lost faith in her and, worse, now that I know more, I think she probably contributed to my fast decline. I started an incredible number of supplements at full dose, all at once when I had never even taken regular vitamins before and, within two weeks, I was housebound. I eliminated grains, dairy, legumes etc. at the same time. Never did it occur to me that I should start one thing at a time at a low dose and work up. Never did it occur to me that I could have a genetic mutation that prevented me from breaking down certain drugs and substances. Never did it occur to me that you could have “detox” symptoms when you radically change your diet. I had blind faith.

Most recently, I have had some abnormal test results and the Good Doctor has given me little to no guidance on what they mean and what treatments are available, She hasn’t even answered my emails in the last 5 weeks asking her to clarify what supplements she wants me to try (she was very hazy during the appointment). So, we’re done and I have a new set of practitioners to try out (you didn’t think I was going to relax the search, did you?).

There is a clinic very close to my house where I am now seeing a rheumatologist, a medical nutritionist and a therapist. I like them all so far… kind of. There’s never a perfect fit.

Dr. O, the rheumatologist is the most energetic person I have ever met. I thought I used to bounce off the walls and multitask, but he puts me to shame. It was quite impressive, but extraordinarily exhausting. When I got home, I sobbed from the overwhelmingness of the appointment. I was in the clinic for four hours. He listened to my entire history (and, subsequently, wrote an incredibly thorough and accurate 4-page summary, which he sent to me); he thumbed through my entire binder of test results; he did a brief physical exam (during which I was hit with extreme vertigo after he did a Vulcan-type maneuver on my neck and proclaimed that it was because of sensitivity of the Brachial Plexus Nerve Bundle); he did quick x-rays of my spine (nothing significant, which I find baffling); a Dexa bone scan (osteopenia is worse, but I’m not sure if it is technically osteoporosis yet); ultrasounds of my shoulders (bursitis and fluid in both shoulders which he wanted to inject with cortisone right there and then ~ I declined because, as I told him, it’s like treating a stubbed toe while I’m fighting for my life); and, finally, a blood draw and instructions for a urine collection for mast cell tests (n-methylhistamine, PG D2, PG F2 Alpha).

I’ve put all my test results on this page. All of the MCAD urine tests were normal, which I expected, but was still frustrating. I am happy to have baseline numbers, though, in case I ever experience anaphylaxis again (knock on wood, toba toba) or a severe reaction. I will ask him to put in a standing order for another urine collection so I can retest, if needed. His directions to me were to try Zyrtec/Zantac (the latter gave me terrible nausea and stomach pain, but I’m going to try it again in case it was an anomaly), take fish oil and try Prednisone. He said he “wouldn’t blink an eye” if I were on low-dose Prednisone (Prednisolone) for the next year. I’ve had that Rx in hand now for -shocker- 10 weeks and haven’t taken it yet. But I’m going to. This is the fourth doctor to recommend trying Prednisone and, although I refuse to be on steroids long-term (because they put adrenals to sleep, cause sleeplessness, increase glaucoma risk when I am already a glaucoma suspect, increase osteoporosis risk when I’m already almost there, shut down the immune system/increase infection risk, can cause weight gain/edema and blood sugar issues, AND must be carefully tapered off over months), I think I will trial them as a diagnostic tool and, also, to know what my body’s reaction will be in case I really need them at some stage in the future.

The blood tests (ANA, CRP, ACE, PTH, ANCA, magnesium, calcium, celiac) were all normal except for high Saccharomyces cerevisiae IgG antibodies, which are found in 60-70% of Crohn disease patients. I’m not sure what this means for me. A quick google of symptoms shows that I have all of them except diarrhea, which is the main indicator of inflammatory bowel disease, so I’m hoping it’s nothing serious. I really don’t want to have a colonoscopy.

I went back a few weeks later to see the medical nutrition therapist. Dr. O had quite proudly proclaimed that she was the only Bastyr-trained medical nutritionist in the country (which I find hard to believe, but maybe I just didn’t understand her exact qualifications). Reading her bio was emotional for me ~ she attended the same Master’s program at Bastyr University that I got into but didn’t attend. I worked my ass off to do all the science pre-reqs, paying for night classes with my tips, got in and accepted the place, but deferred a year to save money and, during that year, wound up climbing the restaurant corporation ladder. I never went to Bastyr and I can’t help doing the Choose Your Own Adventure replay in my head ~ what would have happened if I went down that path? Where would my life be if I had gotten my Master’s and wound up doing something like my nutritionist is doing? Helping people, not being chronically stressed-out and sleep deprived, working normal hours, doing something I’m passionate about: food for health…. Would I be sick? I don’t think I would be. I kind of know I wouldn’t be. Anyway, she tested for SIBO and it was negative, which, of course, I was kind of disappointed about, but I’m happy I don’t have to go on the threatened liquid diet.

Lastly, I started seeing a psychotherapist, whom I like so far. He actually calls himself a “rehab counselor”, which is more accurate because he is helping me with doctor, disability lawyer and health insurance broker referrals and trying to make sure I have a supportive team that I like. He has dealt with chronic illness patients a lot, and ME/CFS patients in particular, so he gets it and I feel comfortable being my blunt, cursing, cynical self.

I have a lot of new doctor visits on my calendar, so there will be more posts like this. I know many of you think I should stop wasting my energy, but, until I stop getting leads that I think I need to follow or can’t leave the house at all anymore, I will continue my search for answers.

I was about to write, “…until I lose my healthcare or run out of money…”,  but, it turns out, the Affordable Care Act actually has worked in my case. I can’t be refused because I have these prior issues and Washington’s Apple plan is literally $0 if you have no income (but, I’m going to keep fighting to have an income, obviously). So, that it is some weight off my shoulders. Thank you, Obama. 🙂