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.
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).
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.
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.
There needs to be a ‘dislike’ button on WordPress cos I’d be clicking it! OMG matey I really feel for you. As someone who eats every 3 hours or I feel like the walking dead I totally empathised with your symptoms – there’s no way I could fast for hours on end so you did brilliantly to manage as long as you did. I literally couldn’t survive without bread, pasta and other really stodgy carbs – they seem to contain energy that my body desperately needs.
That’s some seriously low blood pressure and must make you feel absolutely horrendous 😦
Really hope it was all worth it and the tests reveal another piece of your puzzle.
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Jak, yes! That’s how I am! I used to be chastised as a kid for “picking” — I always wanted snacks when everyone else could go long stretches without food. I’m really excited you mentioned this because as you may know (or maybe you don’t because you’re smart enough to stay out of all the facebook groups), SO MANY people online — people with ME and MCAS — say they feel better low-carb or on a keto diet. I’ve often wondered if I’m just resistant and don’t want to give up my comfort food and, if I’d give it a proper try, maybe I’d feel better… But I’m stable with my normal diet. I don’t have blood sugar crashes if I do certain things that do not necessarily conform to what doctors recommend. For example, I can eat sugary things as long as they aren’t on an empty stomach. My BS crashes after porridge/oatmeal in the morning, even with nuts and fruit. I have to chase it with a proper meal or eat it at night after I’ve eaten a bunch of other stuff throughout the day and I’m stable. My BS will also crash if I just eat meat and leafy veg — it happened after homemade chicken soup when my doctor had me eliminate heavy carbs. I need to add squash/sweet potato/parsnip/toast etc. to feel full and have no issues.
Yesterday I lowered my thyroid hormone dose by quite a bit, so I’ll likely start eating less and gain weight. The SIBO test would have been easier if I wasn’t hyperthyroid and famished.
Thank you for commenting here! It’s nice to still have a WordPress reader and commenter after my long absences. xoxo
What a crazy rollercoaster. Glad you are on the other side of that and back to life fueled by banana bread. I’m sorry your symptoms have been so much worse since returning home to the NW….luckily more sunny, dry days are on the horizon.
I can still picture all of your photos filled with cactuses and desert light. I hope something new comes from your journey down to see this new MD and this monumental round of testing (those blood tubes!)
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What a gorgeous comment from a year ago, Soly. I CANNOT believe I let them take that much blood. I’ve researched since and that was seriously dangerous. I’m 95 pounds with probable chronic low blood volume! I just assumed the phlebotomist would say something if it seemed like too much for my size. 😕 Love you. X
Ugh. How awful, Liz! I’ve never done a SIBO test… Fasting, that I can do! (Remember the 40 days in the fall of 2015….). But I wouldn’t be able to eat any of those foods…, except maybe stick of butter for the fat!
I haven’t got long, but I knew I’d forget! I also haven’t gotten sick froma virus in 6 years. We got sick at the same time… The exposure theory explains some of that- people aren’t sneezing in my face all day. But. I have two kids and a hubby. All three of them have had a cold or two per year for the last few years. I usually feel like I am ‘coming down with something’, but instead of getting sick on day two or three, it goes away. In the last 6 years there have been two GI bugs rip through my house. I didn’t get them. It is almost impossible to not get a tummy bug when caring for a child who has upchucked everywhere…(granted, Hubby did most of the work- but still!)… I don’t know what or why- but people who have severe MCAS don’t get colds… When mine was moderate I got sick ALL THE TIME- bronchitis at least once a year….at the very least. Secondary infections from upper respiratory stuff, sinus infections, ear infections, etc etc… But nothing since the fall of 2011.
I’ve started my ‘public facing’ blog- I’ve only done a few posts, but I’m getting there! One of my posits talks about what happened when I got my iron infusion… I had several hours of feel not just ‘my normal before 2011’, but where I felt WELL. A stunning experience. I haven’t felt like that since I was a teenager. Of course, I had a NASTY reaction the last time, so I never got to number 3… My ferritin went up to 45, now it’s 3 again, and my hemoglobin is following quickly after. http://Www.thewalkingallergy.com if u r interested.
If I had to give that many vials of blood it could do me in! I’ve got awful hypovolumia, I ain’t got nothin to spare… I notice when it is more than 7 or 8 vials…I don’t even want to contemplate that many vials! I could chew on nails, I’m craving iron that much. And I take an additional 1.5 liters of saline a day- it makes an enormous difference from reducing my swelling to reducing my BP. paradoxical me… give me diuretics, my BP gets higher. Giving me saline reduces my swelling. So does a handful of Himalayan salt. Third spacing SUCKS.
I’m doing okay, highly variable depending on the weather…or, rather, the pollen count! All the various bits are adding up- I’m no longer in a constant anaphylactoid state ALL the time. This is tolerable.
Hugs (extremely gentle ones). I hope that you escape the pollen, and that those mast cells are less twitchy. It’s SO hard to climb out of a flare, but the spiral down is like lightning. I cisualize a spiral children’s slide- getting down is MUCH easier than getting up… Hang in there! I hope you get some useful info from all those tests- at the VERY least!
I’m sorry you were going through so much, especially at once. But, with all your health issues I have to say that it’s not fair to blame all of your symptoms and problems on the SIBO test itself. I think it would be fair to blame your own system and all the health issues going on. The SIBO test just added to them.
Thanks for the comment, Dee, but, as you can see, the first nine paragraphs have nothing to do with SIBO– it’s a litany of all the symptoms I had going on BEFORE starting the prep diet. So, most definitely, the prep diet just exacerbated everything. I will say, though, even in a good week, my body would not do well with subsisting on just rice, eggs and meat.