Hyperthyroidism

goiters

After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!

A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.

I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.

A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.

When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.” It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.” I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.

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Best Endocrinologist Ever.

Every time I have an appointment with my endocrinologist, I hem and haw about whether I should cancel it. It’s on the other side of town, $50 round-trip in an Uber, it only ever lasts about 20 minutes and couldn’t she just look at my thyroid lab results and email me about whether to stick with my current hormone dosages? Well, each time I go, I am so grateful for this doctor (last week I told her nurse I would walk on hot coals for Dr. B) and I vow to come straight home and write an update so I can remember everything she said. I never have managed to do this and the visit summaries hardly mention anything at all, so today I’m going to write a general update of her treatment.

I’ve seen a lot of endocrinologists in the last six years and they have all, without exception, been kind of odd, stoic and monosyllabic. Until Dr. B. She’s vibrant and engaged (after seeing her, I always mourn my lack of brain energy a little more), listens closely, talks about her ideas out loud, thinks outside of the box and is interested in conditions not typically related to the endocrine system. Imagine that: a big hospital allopathic endocrinologist taking the whole body into account!

The first time I saw her a year ago, I told her my basic story (anaphylaxis 2001-2002, vasovagal collapse 2005-2011, thyroid goiters 2009, radioiodine ablation 2010, SICK 2011), assuming she’d check my thyroid and update my prescription as per usual — and she did, but she also ordered pituitary blood tests, a Cortrosyn stimulation test (CST) (otherwise known as an ACTH stimulation test — it measures how well the adrenal glands respond to ACTH), referred me to two neurologists — one that specialises in headaches and one that specialises in dysautonomia — and said we would consider placing a continuous glucose monitoring device to assess the drops in my blood sugar (good news is, my blood sugar crashes got much better, possibly because I am eating all foods again and have put on weight). No other endocrinologist had ever suggested any of these things.

I was dreading the CST because of my reactivity and intravenous injections of anything don’t allow me to start low and slow, but it was fine. I did my research beforehand (yes, they were they only using 1mcg of Cortrosyn; no, I didn’t need to fast; no, it didn’t need to be timed according to the follicular phase of my menstrual cycle; no, I didn’t need to be off bioidentical hormones; and, yes, my husband could be with me), so I felt comfortable about the procedure and the results were normal.

The pituitary testing showed low LH (luteinizing hormone), DHEA and IGF-1. Because of the latter, at our next appointment Dr. B ordered a pituitary MRI to “leave no stone unturned” (LOVE her). The MRI was normal, but she emphasised that it was less reliable because of my unwillingness to use contrast (I didn’t think the risks of a reaction outweighed the benefits of a better MRI — and she was ok with that). She also gave me a prescription for Florinef to see if it would help with my hypotension (blood pressure was 80/60 at this appointment). I trialed it for a month (starting at 0.0125mg (!!), working up to 0.1mg) and thought it might be increasing my headaches (but not my blood pressure, of course), so I stopped, but it’s still on my list to retry.

My thyroid levels have consistently been tanked for the last 6 years and at every appointment Dr. B would tweak my meds. I’ve gone from 50mcg/day of levothyroxine to 100 to 125 and from 5mcg/liothyronine to 10 and — this is exciting — when I told her my naturopath suggested much higher T3 and lower T4, Dr. B said, “I’m totally open to that, let’s try it.” 😮 Typically allopathic endocrinologists and NDs do not see eye to eye on treatment and optimal thyroid levels and often one doctor will be resistant to another doctor’s suggestions, especially when the suggestion comes from someone who isn’t a specialist. Dr. B has no ego getting in the way. So, we increased my T3 to 15mcg twice/day and lowered T4 to 100mcg. I really don’t know if it has helped, but she seems more satisfied with my thyroid levels. She told me to watch out for tremors, heart palpitations and insomnia, but they are all within my normal constellation of symptoms, so who knows (although, as I’m typing this, I realise that my quite-vicious nightly palpitations haven’t happened in a while– maybe weeks). She diagnosed me with “euthyroid sick syndrome” which essentially means your thyroid will stay sick until the underlying chronic illness gets better.

I saw a headache neurologist and a dysautonomia specialist (more on both of those in separate posts), but neither of them were the ones to which Dr. B referred me. And — another reason to love her — she had no problem with that and was still interested in what they had to say. Even better, when I told her the dysautonomia specialist didn’t have much to offer and essentially told me just to make sure I don’t decondition any further, Dr. B raised her eyebrows in surprise and kind of dismissed this, still interested in helping me fix this piece of the puzzle (those of you that haven’t done the doctor rounds might not realise that almost all of them tell you to simply exercise more (or gain/lose weight) (or take antidepressants), so I expected Dr. B to take the specialist’s assessment as bible and agree that I was just deconditioned). She suggested I do a growth hormone challenge (it involves a 17-hour fast, an 8am check-in and a 5-hour test where they give intravenous glucagon and then measure human growth hormone (HGH) response through blood draws) and said the worst side effect she’d seen was vomiting. I wanted to vomit at the thought of getting to a hospital at 8 in the morning. I went home to do some research; that was in July of last year.

When I saw her again at the end of September, I hadn’t done the HGH challenge and she didn’t give me a hard time at all. Three months after that appointment I still hadn’t found the nerve, so I emailed her a long message about my glucagon fears (those of you with mast cell/anaphylaxis/medication sensitivity issues can read my email* below for the reasons it gave me pause) which any other specialist would either not answer or reply that I should come in for an appointment to discuss. Instead, she sent me a very thoughtful, validating reply (not “For fuck sake, stop being such a scaredy-cat and do the bloody test since I’m the one doctor who is investigating all these things!”) and offered an alternative to glucagon — an insulin challenge test — which I agreed to … and then never did. They give you intravenous insulin, drop your blood sugar to 40 and then test HGH. I told her I was more comfortable with the devil I knew (hypoglycemia) then the one I didn’t. But, it turns out I’m not really comfortable with voluntarily meeting any devil. I’ve had my blood sugar drop into the 40s. It was absolutely horrific — one of the worst feelings I’ve ever felt. And, although they give you intravenous glucose right afterwards, I still couldn’t bring myself to do this test and subject myself to the crash when I thought they probably wouldn’t find anything.

So, I waited until my appointment this month — 8 months after she first wanted to investigate this avenue — and told her of my fears about the insulin challenge test as well. I expected her to just give up, to say there’s probably nothing wrong there, anyway, but she didn’t. She said there was an additional reason to do the insulin challenge (other than for HGH output) and that was that it can pick up a hypothalamus issue that the glucagon stimulation test can’t. Ok, I can get on board since it’s a two-fer. However, in another display of out-of-the-box-ness and medical generosity, she suggested I just try HGH injections without doing the challenge test. She said she had two other patients with the dyautonomia-mast cell-EDS trifecta (more on my EDS diagnosis at another time) and, even though neither one flunked the stimulation test, they tried HGH and had really good results. A friend of my sister-in-law’s had a lot of success with HGH and it has always been in the back of my head as something to try when I win the lotto. I read it cost thousands of dollars, but Dr. B’s prescription is “only” $138/month, so I’m on board. If/when I get the nerve, I can stop the HGH for a week and do the challenge test and, if I fail, insurance will pay for my prescription. An added bonus is my nurse who comes to my home every week (to give me intravenous fluids with my immunoglobulin infusions) can show me how to subcutaneously inject the HGH and I don’t need to go across town for a tutorial appointment.

Gratitude for good doctors! Wish me luck with the HGH.

Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

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I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

Doctors, Tests and Direction.

So, the MD that my husband and I have seen since 2007 has left her practice abruptly and I’m quite sad because we had a great relationship and mutual respect. She trusted me and would run tests that I requested if I had good reasons. She also knew me before I was sick and that was very important to me. She knew me when I was bouncing off the walls with energy and happy. She saw me a week before ME hit for a check up and I told her my only problem was sore muscles which I attributed to sitting at a desk after so many years walking the floors of restaurants. She witnessed the abrupt change in my abilities when all the other doctors I’ve seen have nothing to compare my current level of health to.

Now my two doctors are naturopaths: Dr. Erin and Dr. Kim. I had follow-ups with both of them in the last 10 days. Dr. Erin has put me on 25 mg of DHEA and progesterone. They’re topical, compounded only with coconut oil, nothing else. She’s hoping these will feed down both pathways to raise all the other hormones that are low.

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And by “pathways”, I mean, instead of giving me just Pregnenolone (at the top of the “map”) and letting my body do with it what it wants, the DHEA and progesterone insure that (in theory) I’m feeding all branches of hormone production:

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My thyroid hormones continue to be low, even though I almost doubled my dose a few months ago, so I’m changing to compounded T3 and T4. Dr. Erin doesn’t want me to try NDT (natural desiccated thyroid from pigs) because I’m so reactive right now, but she’s hoping compounded meds without the crappy gluten- and dairy-derived fillers will help me absorb the hormones better. I’m really nervous about the change because I’ve taken the same generic pills every morning for 6 years — well before I got sick.

My salivary cortisol test showed high levels throughout the whole day, especially at night. However, Dr. Erin said she thought functionally I was still low, her theory being that my body is compensating for something and that cortisol is either being converted to a less active form or receptors are down-regulated, which results in my body needing to produce more to get the same results. She also wants me to start humic acid (for chronic infections) and a homeopathic lotion to rub into my sternum which can supposedly desensitise my body and help reactivity. Not sure how much faith I have in homeopathy, but there’s no harm in it, other than the cost. I’ve also been told to start daily “hydrotherapy” (basically, hot and cold towels to boost immune function) and oiling my body to absorb additional fat (some serious old wives’ shit going on here).

Dr. Kim ran a bunch of blood tests. The good news is my CBC, metabolic panel, folate, iron and vitamin D are all within normal range (the latter two I would like to be higher). The bad news is, total immunoglobulin and all 4 subclasses are even lower than they were when Dr. Chia tested them. I also had high levels of Mycoplasma Pneumoniae IgG, HHV6 IgG (which I already knew) and she said I was “dripping in EBV.” Gross.

The final blow was candida is high. Those who know me, know I have dreaded the day I was tested for candida and purposely didn’t bring it up with the last 30 doctors because I don’t want to face my sugar addiction. Dr. Kim isn’t insisting I go on a strict no-sugar diet, god love her, because I think she recognises my need for the joy it provides and, really, I try to be responsible — a bit of dark chocolate, ice cream, some honey, jam, fruit, dates… It’s not like the good ol’ days where I could eat a Dairy Queen Blizzard or a whole purple Yorkie without thinking twice. She is putting me on a prescription anti-fungal, Nystatin, a pulsed dose — 4 days on, 3 days off.

I am waiting to hear from insurance about sub-cutaneous IgG (because I’m too scared to start with IVIG) and, in the meantime, I am starting to supplement copper, low dose B-complex, additional B6 and B1, increasing Thorne Trace Minerals to twice a day and magnesium glycinate to 4 times a day, as well as homemade electrolyte water all day long.

I’m hoping and praying that I will feel like a different person once my hormones and thyroid are balanced. Then my blood pressure will come up and my brain will work better, headaches will dissipate, my immune system will be able to suppress the infections, sleep will get better, reactions will fade, fatigue will lift and we’ll all live happily ever after!!

November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

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What I see now from the top of the stairs:

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I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It'd be nice if they left some blood in my body.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

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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.

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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.

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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.
image

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.

dublin heart

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

What I’m doing now that may or may not be making a difference.

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:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 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
    • Sporadically:
      • 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
      • GABA+theonine
      • 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.

Diets Part IV: Low-Histamine, Mold Diet, Migraine Diet, AIP, Low-Sulfur and SIBO.

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.

Grass-fed, pastured beef sirloin and braised red cabbage from Nom Nom Paleo (click image for recipe).

Grass-fed, pastured beef sirloin and braised red cabbage from Nom Nom Paleo (click image for recipe).

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.

No nuts or oats? My new snacks: plantain, parsnip, sweet potato and beet chips.

No nuts or oats? My new snacks:
plantain, parsnip, sweet potato and beet chips.

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.

Juice with allowed low-sulfur veg: beet, carrot, celery, cucumber, apple, ginger.

Juice with allowed low-sulfur veg:
beet, carrot, celery, cucumber, apple, ginger.

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!

SIBO prep meal

SIBO prep meal

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!

A tip from my Facebook friend, N., to excite my SIBO prep diet: Crispy waffle iron rice! (click image for recipe)

A tip from my Facebook friend, N., to excite my SIBO prep diet: Crispy waffle iron rice!
(click image for recipe)