Dental Work Protocol and Precautions for People With MCAS/ME/MCS.

I have to get a filling done for the first time since being sick and extremely reactive to medications. I know this is the beginning of many future dental procedures because I have a lot of aging mercury fillings and I’m sure they will have to be replaced eventually. Also, I haven’t been wearing any sort of oral device when I sleep — be it a night guard or apnea apparatus — so I’ve been clamping down, grinding and cracking my teeth again. Also, my teeth feel more unstable this past year: I have trouble chewing certain foods in certain spots and random pain. I read that this might be a result of immunoglobulin infusions; some people claim it wrecks dental health. I haven’t gone down that research rabbit hole, but it nags at me a bit. So, I need to find out what anesthetics and materials are safe for me and develop a standing protocol for this current cavity and also for future dental work.

I am one of these mast cell people that can eat almost anything, but I have extreme reactions to micro-doses of medications — even medications I’ve taken with no problem in the past — so, I’m scared of being in a dentist’s chair and having an anaphylactic reaction of any sort. I’ve been doing research and, as usual with MCAS, there aren’t great ways to control the outcome of a procedure like this besides taking normal precautions and crossing my fingers. Normal precautions for me are:

  • Schedule my appointment for a safe time of the month. My menstrual cycle is bananas at the moment (has been coming every 13 days some months recently and spotting daily), so I only feel confident the first week after my period.
  • Premedicate: For the week before, I will not forget to take my Loratadine and Ranitidine twice a day. On the day of, I will take Prednisone (I take a VERY low dose because it wallops me), Benadryl, Zantac and Paracetamol.
  • Hydrate to raise blood pressure: In the days before, I will drink 2-3 litres of water. On the day of, I will do IV fluids (maybe).
  • Food to stabilize blood sugar: Be well fed before the procedure and have frozen food prepared for afterwards. I also eat a lower histamine diet in the days before and after a new or risky medical procedure.
  • Rest: Be well rested before and proactively rest after the procedure.
  • Try to do as much of the dental work as possible without anesthetic. Before the dentist starts, bite open a capsule of Benadryl and squirt it on the tooth and gums in question. I learned this trick from an allergist who told me to squirt Benadryl directly on my tongue when it swelled up. Benadryl is a great numbing agent.
  • Have the dentist use a local anesthetic without epinephrine. I found this out the hard way long before I was sick or dealing with mast cell issues. I’ve always responded badly to epi.
  • I always carry salt packets, glucose tablets, electrolyte water, antihistamines and an EpiPen to help stabilse my vitals, manage any reactions and ward off vasovagal syncope.

Once I’ve gotten this first filling out of the way with no reactions, I’ll undoubtedly ease up on the pre-meds and not consider IV fluids, but, because I don’t know how I’ll react, I’m taking all precautions this time.

Here is some info on choices for dental materials:

  • Local anesthetics:
    • Allergic reactions to local anesthetics may occur as a result of sensitivity to:
      • 1) either the ester or amide component;
      • 2) the preservative methylparaben;
      • 3) sulfites (sodium bisulfite, potassium metabisulfite), which are used as a preservative in local anesthetics that contain epinephrine; or
      • 4) the medication, itself.
    • Ester-based local anesthetics are typically associated with a higher incidence of allergic reactions due to one of their metabolites, para-amino benzoic acid (PABA). In general, amide-based local anesthetics are less likely to cause allergic responses because they do not undergo metabolism to PABA.
    • Ester-based injectable local anesthetics are no longer used in the United States, but are used topically (numbing jellies, such as Benzocaine), so discuss what your dentist will be using.
    • Allergic reactions to amide-based local anesthetics can occur because of the preservative, methylparaben, which is structurally similar to PABA. However, methylparaben has been removed from single-use dental local anesthetic cartridges, which are what private dental offices typically use (multi-use vials might still contain methylparaben. These are typically used in hospital settings and physicians’ offices). Double-check what your dentist uses.
    • True allergies to amides are exceedingly rare in the general population (but they do exist — for some ideas on how to navigate dental work with an amide allergy, see this article). Because of this, your dentist might (correctly) tell you that allergies to amides (as opposed to the preservatives in the anesthetic) are virtually unheard of or that it is impossible to be “allergic” to epinephrine. I think it’s important not to use the word “allergy” too casually, but, rather, make sure your doctor understands how mast cell degranulation works with MCAS: that you can have anaphylactic (life-threatening) reactions that are not IgE-mediated, but present the same way.
    • People with ME, mast cell disease or multiple chemical sensitivity (MCS) often have exaggerated reactions to the epinephrine in many local anesthetics. These anesthetics also contain sulfites (added as a preservative for the epinephrine), which can cause allergic reactions. If you are concerned about reactions to epi, sulfites or want to play it safe, I would ask for a local anesthetic without epinephrine. Bear in mind, you will metabolize the anesthetic quicker than if it had epinephrine, so, depending on the procedure, you may need more injections (right before I got sick, I had dental work done that required over 20 injections and I think the gruelling nature of that day probably played a part in my immune system crash).
    • Examples of common anesthetics that are typically tolerated, according to The Mastocytosis Society: Lidocaine, Bupivacaine, Prilocaine (brand names Bidanest or Citanest Plain (the latter contains no vasoconstrictor)), Mepivacaine (also called Carbocaine, Scandonest, Polocaine (by Astra)) and Ropivacaine (which is always preservative-free). I believe Mepivacaine is always free of epinephrine (and I’ve been told by a few friends that they had no reactions to it; one very sensitive friend specified that she got 3cc of 1.7% Carbocaine and was fine), but, as always, double-check with your dentist. This page has a handy chart of local anesthetics’ ingredients.
    • Some anesthetics don’t use epi, but do use a different vasoconstrictor (for example, Citanest Forte), so make sure you are clear on what your dentist uses.
    • Other things to note:
      • If you have Ehlers-Danlos Syndrome (EDS), which is a connective tissue disease that is a common comorbid condition of ME, MCAS and POTS/dysautonomia, you might need more anesthetic and it might wear off quicker than the average person — especially when using a medication without epinephrine because there’s no vasoconstriction.
      • Vasodilators are risky for those of us with hypotension and circulatory problems. Nitrous oxide is a cerebral vasodilator — not to be confused with NITRIC oxide (not used in dentistry, as far as I know), a strong vasodilator often used for respiratory diseases.
      • Most topical anesthetics contain gluten, so those individuals with either celiac disease or gluten sensitivity should avoid topical anesthesia.[ii]
      • I have been told by multiple people with chronic pain syndromes that going without anesthesia is not a good idea because, in these cases, the body “remembers” the pain and it can set you up for future worsening issues.
  • Fillings:
    • Composite: cheaper, expands better than porcelain, usually better for small fillings.
      • Traditional composite examples:
        • Grandioflow
        • Filtek Supreme Ultra by 3M
      • Holistore unshaded by DenMat is a biocompatible composite that is recommended for bonding and smaller fillings. It contains no metal oxides, but is quite white in color and is significantly less durable than some other composites. Premise Indirect (formally BelleGlass) unshaded by Kerr for in a metal-free composite that can be used for crowns, inlays and bridges.
    • Porcelain: looks more natural than composite and the consensus is that this is the safest material option, however porcelain contains more metal oxides than composite and is much more expensive ($thousands vs $hundreds). It cannot be used in certain instances (for example, small spaces between teeth). They are pre-fabricated, so take more time and multiple appointments.
      • Inlays: fit inside the tooth.
      • Onlays: fit over the tooth.
      • Crowns and bridges.
      • Zirconium: can be used for inlays/onlays or implants.
  • Dental cements/adhesives/bonding agents: There are various different kinds (for example, my dentist uses Prime & Bond Elect by Dentsply and Relyx is often used for crowns). Some biological dentists recommend Tenure and Tenure S by DenMat for bonding. Other brands used by bio-dentists I’ve contacted: Optibond, Admira Bond, All Bond Universal. Like composite material, there’s not a lot of information on brands that are “safer”, so you might just have to try one out and cross your fingers.

Dr. Douglas Cook, who is known to see many patients with MCS, has written books and has a lot of info on his website about biocompatible dental materials.

Here’s a link to the most typical dental materials that test as “clean” and relatively inert.

For an good in-depth analysis, see this article: Allergic Reactions to Dental Materials-A Systematic Review.

There are options for reactivity testing before you have dental work done. I’m a bit of a skeptic and, more importantly, I like to conserve energy and money, so I probably won’t do any of this testing, but I’ll lay them out:

Testing before dental work (some info here):

  • Clifford blood test: You need a doctor to order this test and it’s over $300. It tests for “antibody sensitivity” to 94 chemical groups and “correlates” these sensitivities to 17,204 dental materials. I put those in quotes because, after corresponding with Walter Clifford and researching how these tests are done, I’m not sure I trust his skills or the accuracy/scientific legitimacy of the testing. IMHO. I might be wrong. However… it’s something. It’s a guide. Even if, at a minimum, it makes a patient feel more confident and less fearful of a reaction, that, in itself, can calm mast cells. (Note: If you do immunoglobulin infusions, the accuracy of the Clifford test results will be compromised.)
  • Muscle testing dental materials. Biological dentists often have kits that can be sent to your ND. Again, I’m not sure how I feel about muscle testing, but, at the very least, it’s a way to provide direction and give confidence.
  • MELISA blood test for metal allergies. You need a doctor’s order and they’re pricey. Here is their test requisition with the costs. Shipping to Germany from where I live is $118 on top of the cost of the test, so bear this in mind.

It turns out, my cavity has grown around an existing mercury filling, which will have to come out. I was planning to go to my regular dentist (who is interested in learning about mast cell diseases and is phenomenal about talking through options), but he doesn’t take any precautions when removing mercury and the last thing I need is my body to be burdened by additional toxins when I am compromised in virtually every detoxification pathway there is (not just things like liver and methylation, but my body doesn’t even manage to do the very basics like bowel movements and sweating). So, I’m planning on finding a local dentist that practices the “SMART” protocol for mercury removal. The downside of this is that I’ll need another full exam with my new dentist even though I just had one with my regular dentist, which means at least two appointments to get the filling done. Plus, this is all out of pocket for me, but my regular doctor gives me a cash discount which these holistic/biological dentists don’t = energy and $$$.

You can search here, but I asked my doctor, my friends and in local online groups and came up with this list of Seattle-area dentists:

  • Paul Rubin (North Seattle, possibly retiring soon)
  • Richard Stickney (downtown, front office staff is incredibly informative, thorough and kind)
  • Jessica Saepoff (Issaquah and Mercer Island)
  • Rebecca Taylor
  • Gregory Zimmer (Tacoma)
  • Mitch Marder (I ruled him out for myself because of a bad experience.)

I think I am going to see Paul Rubin or Richard Stickney, based on location and my conversations with their staff. I’ll let you know how it goes.

Speaking of detox, you might want to consider taking/using these things before and after dental work (I never have, but I’m considering it):

  • Charcoal capsules
  • Charcoal toothpaste
  • Chlorella
  • DMSA
  • One dentist recommended taking this product up to a month before mercury removal.

See The Mastocytosis Society’s medication guide here and more on medications that impact mast cell degranulation here.

Find mast cell dental info on Lisa Klimas’s Mast Attack blog here and other articles by Cathy Scofield here and here. An ME/CFS dental info handout is here.*

*I did not write these articles or research the details, so some of the info might not be entirely accurate — it’s up to you to do your own research.

**References:**

The Mastocytosis Society’s Emergency Room Protocol.
[i] Allergic Reactions Did you know. . . Volume IV, Number 1 | January/February 2001
[ii] “Numbing Jelly” or Dental Topical Anesthesia.
Understanding allergic reactions to local anesthetics.
Allergic Reactions to Dental Materials-A Systematic Review.
Non-IgE mediated mast cell activation.
Novocaine Allergy Part II – Methylparaben and Sulfites.

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SIBO Antibiotic Failure in Half a Milliliter.

Referring to my last post:

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

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

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

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

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

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

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

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

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

Medication Wars: Treating SIBO and Low Cortisol

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

IMG_20180501_100901_710.jpg

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

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

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

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

Meat Madness

9 weeks ago, (one of) my doctor(s) asked me to stop eating meat and a few other things because of a blood test that supposedly showed I was intolerant. I know many of you are vegetarians, but not I. Not ever. Meat is a staple, something easy to heat up and my main source of protein. Also, so much food waste. Jars and jars of bone broth and meaty meals in my freezer. I cried on the phone with her, but agreed to try because why not? I have been doing so poorly lately that my husband has gone off to the Sunday farmer’s market to get me a chicken in case this elimination is contributing to my symptoms.
The problem is… when a doctor tells you you are intolerant to something, it worms its way into your brain and sets up camp in the deep recesses, causing a bit of almost-imperceptible anxiety when you eat the thing in question. It happened to me when IgE blood tests showed I was allergic to eggs and tomatoes. They didn’t show up again on subsequent tests and I eat eggs all the time now, but there’s always a tiny voice hissing, “Is this egg contributing to your issues? Don’t eat too many!”
It’s the same thing with that dangerous and evil AIP diet. It was bad for me and I’ve been eating grains, dairy, legumes etc. again for years, but … but… all the stuff you’ve read just sits in the shadows of your mind, whispering: “Is this making you worse??” And that’s even when the grains are gluten-free, the dairy is organic and the legumes are soaked. Fuck sake.
So, anyway, we’re roasting a fresh chicken for lunch and we’ll see how it goes. Fingers crossed it doesn’t make me worse. Or, if it does, that I recognise and can identify it, because god knows I’m an expert at ignoring any reactions so I can continue eating my favourite foods.

Inserting my own peripheral IV catheter.

I guess I should say: Warning: Graphic medical procedure!

When I was learning to insert an IV, I couldn’t find many decent tutorials online (I was only allowed one nurse visit to walk me through it and I found watching people do it was even more informative). Since my Mom is visiting, I asked her to make a video in case it could be helpful for others. This angle isn’t the best for a detailed view, but it’s a good first go.

Driving, yelling, shopping, crying, writing and ice cream.

If I don’t have brain symptoms (which is the true limiting factor to my writing this year) and I start to post something about my illness, about my days, about my lack of coping skills, I invariably think, “You aren’t bedridden, how can you complain? You are able to feed and bathe yourself, are you really going to bitch about how difficult your life is?” Because that’s what I want to do more often than not. Complain. Vent. Rage against the world. And perhaps make some tiny bit of sense out of this existence and give myself some breathing room.

I’ve been so bottled up, I have tears threatening to spill over every day. So, I am going to write about today and preface it with this: To my friends that can’t get out of bed or watch TV or eat whatever they want… to those of you that haven’t left the house in years and don’t have some of the things that keep me sane like my dogs and my husband (I probably should have led with the husband there), I think about you. I shudder to think about you. You inspire and humble me with your resilience and I wish I could change things.

I want to write about the small, but significant choices I made today. It’s a short story and the end of it is I went to bed and sobbed into my pillow because my therapist said I should. He said crying is a primal emotion that serves a purpose and I should let it out, so I did. I don’t know if it helped. I feel the same as I did before, only with swollen eyes, but I appreciate that he gave me permission, for lack of a better word. He’s always telling me, “Get out of your head, stop trying to rationalise everything, stop trying to make an action plan for everything, stop the black and white thinking.” But if I’m not analyzing, organising, planning, executing, succeeding and then second-guessing everything I did, then who am I? That’s a rhetorical question.

Anyway, today.

I can’t remember the last time I went in a grocery store. Many, many months ago with my husband, I think. Maybe even last year. It’s a big deal, it takes planning and guts. We had a 10% off promo that needed to be used today and the store was a 4-minute drive. They have a deli and I decided that driving there and buying deli food would be less energy than trying to cook something. After all these years, I still marvel that these are the sorts of choices we (those of us with energy deficits) have to make. Driving, if my brain is operational, does not use up a lot of my energy, but washing, chopping, standing at the stove, stirring, whatevering… It’s exhausting. So: drive, park, the deli is right inside the door, get food, come home. Scary when I’m having a difficult health month, but easier, I decided, than the alternative and, if I’m not pushing myself too hard and crashing, then who am I? Again, rhetorical.

I’ve been beaten down recently by a 5-day migraine and bad sleep for months, wondering how to keep going through the motions of survival. In a nutshell, I’m pretty raw and small things feel harrowing. I talked to myself the whole way to the store: “You’re fine, you’ve got this, you won’t pay for this. Red light means stop.” I parked in a handicapped parking spot (with my permanent handicapped parking permit displayed) and shuffled to the elevator that goes up to the store. There’s a small stairwell, too, but I’ve never climbed it in the 4 or 5 times I’ve been at that building. I hear someone yelling across the parking lot. YELLING. Not nice yells. A woman near me says to me, “She’s saying she doesn’t think you’re disabled.” I replied quietly, “Oh, I am” and she gave me a kind look as she started up the stairs and nodded at the elevator as if to say, I can see that. But, also, look at my face! Can’t you see it? How can they not? But they can’t. Maybe in Seattle in November everyone is grey-skinned, sunken-eyed and haunted-looking to a certain extent.

I thought that was the end of it, but the woman in her car was still hollering. She’d stopped on her way out, blocking people, so intent on getting an answer that she’d rolled down her passenger side window and was shouting, “DISABLED? DISABLED? ARE YOU? HELLO? ARE YOU DISABLED?” It was aggressive and accusatory, not inquisitive or, god forbid, compassionate. I had already nodded yes at her, but she continued on. I mouthed, “I am,” but she couldn’t see or it wasn’t good enough. I started to feel very weak because I can’t sacrifice the energy to go talk to her, I can’t sacrifice the energy to project my voice, people were staring now and I felt defensive and emotional and the heat was burning up my chest and, before I knew it, I roared YEEESS! and immediately felt dizzy, immediately had a sore throat. Legitimately — a sore throat that’s still here tonight. We people with ME don’t roar. And, oh, how I miss it. How I miss being enraged and having a good old screaming match, replete with stomping off and door slamming. I used to be really good at that.

The woman shouted back: GOOD! and drove away. It echoed around the closed underground lot and made me feel very small.

I tried to tell myself her heart was in the right place, that she was looking out for disabled people and that I’m glad there are ballsy watchdogs like her in this world… but it didn’t stop the resentment from welling up. She caused this embarrassment, this upset, she caused me to yell when my voice is so weak. And she’ll be fine, she won’t pay for this interaction because she wouldn’t have initiated it if that was a concern. I started silently blubbering in the elevator. I walked to the deli weeping, I ordered the food while sniveling, I wiped away tears while paying. And I bought a pint of chocolate hazelnut fudge ice cream because fuck that lady.

When I went to leave the parking garage, I realised I hadn’t gotten my parking ticket stamped, but there was no way I could walk back to the elevator and into the store. Another example of the small, but soul-eroding kind of choices we have to make. I was so beyond my safe energy expenditure that I worried about not making it home. It was too far to go back and I had to save my steps to get in my house. So, I paid for parking and it negated the 10% off promo that inspired me to venture out in the first place.

When I was putting the things into the fridge, I did it sitting on the floor and when I stood up, I bashed my head so hard on the corner of the counter, that it drove me back to the floor, my vision whited out and stars burst and birds chirped around me. The migraine, which I’d just quelled yesterday with my infusion medications, burst back onto the scene, shooting cyclical stabbing pain through my left eye. That was it. I took my therapist’s advice and went to bed to sob into my pillow.

I do feel a bit better now, so maybe it did help. Or maybe it’s because I’m writing for the first time in over 5 months. Or maybe it’s the chocolate hazelnut ice cream.

Body’s in Trouble and SIBO Test From Hell.

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

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

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

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

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

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

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

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

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SIBO prep meal

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

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

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

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

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