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.
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…
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
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.
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”
[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.
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.
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:
1/3 of a capsule of B complex #6
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.
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
This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.
I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.
- I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
- I track my resting HR every morning before getting up and before taking my thyroid hormones.
- I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
- I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
- I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
- I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
- I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
- I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
- I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
- I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
- I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
- I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
- I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
- Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
- I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
- I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
- Here’s what I take currently:
- thyroid hormones (T3 and T4)
- 2.5mg Prednisone
- Before meals:
- Thorne Bio-Gest (for gastroparesis)
- Digestive Enzymes (for gastroparesis)
- 250mg yucca (for high ammonia/CBS mutation)
- After breakfast/mid-day meal:
- 500mg Acetyl L carnitine
- 100mg CoQ10
- 36.5mg riboflavin 5’ phosphate
- 15mg zinc + B6
- 500-1,000mg vitamin C
- 100mcg molybdenum (for high ammonia/CBS mutation)
- Thorne trace Minerals
- 1 tsp Calm magnesium + calcium
- After dinner:
- 2,000mg fish oil (1,000mg EPA, 50mg DHA)
- 4,000iu Vitamin D3
- Before bed:
- 400-600mg magnesium glycinate chelate
- 1mg Melatonin
- I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.
Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.
Well, the uptick in stability I mentioned in my last diet post has gone away. My daily headache is back, my heart rate is back up (not too high, but not the super-low it was), my muscles are worse, my blood pressure is all over the place, and I’m far more exhausted and dizzy than I was in January and February. So, back to normal!
When we last spoke, I was on a low-histamine, pretty much paleo diet (allowing rice), plus no eggs, citrus, nightshades or soy. I had a mycotoxin panel done and, in rare abnormal test results, found I had some very high levels in my urine. While researching mold toxicity, I found the “mold-free diet“. I was pleasantly surprised to see it was pretty much the same as the low-histamine diet and I was already following it. I was also dejected to learn there was another reason for me to continue avoiding all of these wonderful foods and bending over backwards to not consume leftovers.
Looking for help for my constant daily headaches, I came upon this article in the NY Times, called, “The Migraine Diet” (list is here). Judith Warner says, “I stopped drinking caffeine and alcohol and stopped eating chocolate, cheese, M.S.G., nuts, vinegar, citrus fruits, bananas, raspberries, avocados, onions, fresh bagels and donuts, pizza, yogurt, sour cream, ice cream, aspartame and all aged, cured, fermented, marinated, smoked, tenderized or nitrate-preserved meats.”
Hmm… Well, yet another reason not to eat dairy, gluten and aged, cured and fermented foods. But I really didn’t want to entertain the idea of life permanently without onions, raspberries, bananas and citrus fruits. Plus, I was still drinking my cup of black tea every morning and eating nuts and some sugar. My three loves. Maybe I would ignore the migraine diet recommendations and just take some Tylenol. Maybe I will revisit this down the road.
I decided, since I was almost there anyway, I wanted to give the Autoimmune Paleo diet (AIP) a chance for a month or two and see if it made any difference to anything. My vitilgo is not a big deal, my autoimmune urticaria and angioedema has not been an issue in a few years (knock on wood), but my thyroid is an ever-present problem and ME could have autoimmune roots, so I wanted to give it a try. AIP basically involves no grains, dairy, legumes, nuts, seeds, nightshades, eggs, caffeine, sugar or processed foods. It was designed to be a temporary elimination with reintroductions after the initial strict period, although some people seem to stick with it forever. I mope-ily removed nuts and seeds from my diet last month and was gearing up to kick rice, tea and coconut sugar to the curb when my research into the methylation cycle led me down a side road to a low-sulfur diet. Hold everything.
My 23andMe results (I’ll go into this in more detail later) showed I have a CBS mutation. Some doctors (most notably Dr. Amy Yasko) maintain that one must deal with this “first priority mutation” before embarking on a protocol to unblock the methylation cycle. The CBS, plus two BHMT mutations, means I may have excess sulfur groups, which deplete molybdenum and BH4 and cause high taurine and high ammonia levels. I know from test results that my ammonia levels are high, so this is something I wanted to address. Working on methylation is a very long process- probably a year or two- so, if dealing with the CBS mutation is the first step, I wanted to get the show on the road. Suggestions are to eat a low-sulfur diet (my research indicated that animal protein was not as much of an issue as high-sulfur/thiol veg), so I omitted garlic, onions, most cruciferous vegetables and leafy greens and I stopped my epsom salt baths. This was hard, but I thought, It’s only for a month or so. While continuing to keep out nightshades and high-histamine foods, my allowed vegetable list was: artichokes, beetroot, carrots, celery, cucumber, lettuce, parsley, parsnips, squashes, and sweet potato.
I started this at the beginning of March … aaaaannndd then I got my appointment with the medical nutrition therapist who was not only recommended by my doctor, but also by someone on one of my Facebook histamine/mast cell groups. Another side road.
The appointment was an hour and a half and she went over my symptoms and my food diary (note to self: edit your personal, private food diary before giving it to your doctor so it doesn’t say things like “want to vom”, “fight with D” and “bad poop” 😉 ). She said coconut was very high histamine which threw me for a loop since half my calories come from coconut in one form or another. I debated this fact with her for a while and eventually she said, “You’ll just have to trust me on that.” She also thought I might have a problem with salicylates, which I guess I eat in copious amounts. Joy. And she was concerned about SIBO: small intestinal bacterial overgrowth. As you can imagine, at this stage I really want to dump my diet decisions into someone else’s lap, so, while I still have health insurance that covers her service (for another few months), I am going to trust her and give her plan a fighting chance.
I am currently on day two of the SIBO test prep diet. I am only allowed to eat meat and rice for two days (if I’d already eliminated rice, I would only be eating meat, so thank god I procrastinated). Yesterday, I ate turkey, lamb, clear beef broth and rice with butter. Real delicious fatty decadent Kerrygold butter, for the first time in a year and a half. Butter is heaven. But no sweet treat after a meal is hell. I only eat a bit of chocolate or fruit or homemade coconut ice cream, but, judging from my extreme irritability, it is a very real addiction. I’m even salivating at the thought of a lozenge. Having an ever-present sore throat really makes lozenges a necessity!
I was secretly hoping that I would feel great these days on such a limited diet and it would spur me on to continue my food elimination experiments. Unfortunately, I am headachy, weak, sore and have zero appetite. Could it be the butter? Maybe, I guess, but I don’t think so. It might be because I washed my hair yesterday. It might just be ME.
In the next installment, I will tell you about my ketoacidosis scare and the strict low-histamine + low-salicylate diet that begins next week. I know you are all on the edges of your seats!
Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:
Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!
One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.
The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.
Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.
Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.
So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).
Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.
I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.
I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!
In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.