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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A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

Title Credit.

all the logic and language and loss

I was hoping to start feeling better again before I wrote anything, but this downturn is lasting longer than I thought it would. It’s not horrific. I’m not confined to the bed or couch, but, I’m not walking in the garden or doing my stretches ~ my two forms of activity. I’m basically just shuffling around the house, very Tin Man. Easter was the beginning of the slump, with symptoms aggravated by a teeth cleaning last week. I had been putting it off for a few months, thinking it was not a smart expenditure of energy, but, when I was having my good week, I made an appointment.

I looked online beforehand, but I couldn’t find any firsthand accounts of the ramifications of teeth cleanings on people with ME. Unfortunately, I can’t really give an accurate account because I compounded the effects by ~ I know, I’m an idiot ~ driving myself downtown to the appointment and chatting way too much to the hygienist because I wanted to fill her in on my situation (I’ve been going to the same dental clinic for over a decade).

I thought the drive would be straightforward and I didn’t want to ask my husband to take the day off work. Big mistake. Again. The problems started while I was walking from the elevators to the dental office. My heart rate was over 120 bpm and I had to stop walking repeatedly. This was a short hallway and I felt ridiculous stopping every two steps to wait for my heart to calm down. I wasn’t nervous about the appointment, so I think it was because I was carrying my purse… That’s my theory. The cleaning itself was fine. I asked her to be very gentle and skip the floss. The worst part was coming back upright after being tipped fully head-down in the chair for so long. But I recovered quickly from the momentary vertigo and went home.

That night I was curled in a ball on the kitchen floor, crying, feeling like I was dying, dogs swarming around me, wondering what was wrong. I told my husband, “Never let me drive downtown again, no matter how strong I say I’m feeling.” I tried to figure out the reason: Was it because I drove too far again? Or because my heart was running full steam? Or because I talked too much? Or the after-effects of the position I was in ~ akin to a tilt-table test? Or the actual cleaning ~ the release of bacteria, the micro-abrasions? I’m always trying to tease apart cause and effect, but there are too many confounding variables and logic doesn’t lend itself to this disease. Logically, with more rest and more sleep, with a better diet and fewer toxins, with less stress and more mindful awareness, I should be feeling better than I ever have. But my temperance is obviously outweighed by the marauding lifestyle of my viral invaders and the intemperate rage of my immune system.

Happily, my hygienist said she thought it would be fine to push my next cleaning out a year since I am taking such good care of my teeth. There is nothing like a chronic illness to get you to floss every day and never go without your mouth guard ~ I don’t want any preventable problems complicating my current situation.

I didn’t feel as bad the next day, but then my period came. This is now my fourth almost-painless period since coming off the pill in December and, believe you me, I am rejoicing every minute of fearless, crampless menstruation. I spent SO many years dreading the monthly… planning my life around it… so, this positive change in my body does not go unnoticed. However, the ME/CFS symptoms definitely flare up each month ~ the usual uterine pain has just walked around to my lower back. And my coccyx: the absolute southern-most point of my spine is killing me. That baffles me.

Since getting my period, I have had a headache. I haven’t had a headache in so long ~ especially one that goes to sleep with me and is still there when I wake. I’m not happy with this bedfellow ~ I was hoping, since the husband and dogs have been relegated to different beds, I would only be sleeping with the dust mites that could survive my weekly washing ~ so, again, I’m trying to analyse the cause: Is the headache from my period? The new Seriphos supplement? The new licorice tea? Pollen allergies? Neck tension? Bad sleep? But, all other symptoms have increased, too: I’ve had more of the usual inflamed, painful, stiff muscles. The hot/cold issues. Feeling like I’m coming down with something… sore throat … you all know the deal. And I had two nights of slight night sweats. This struck the fear of god into me. Besides the muscle issues and heavy dragging exhaustion, these are symptoms that had left me. Yesterday, I started begging aloud: Please don’t let it come back, PLEASEPLEASEPLEASE...

For a few months I have been watching the texture of my skin change. It’s bumpy ~ different than anything I’ve experienced in 40 years. I was convinced it was my extremely high-fat diet, so I ignored it. Who cares? I have bigger fish to fry. But it’s getting steadily more alarming and during these last few weeks of hormonal fluctuations, it has bloomed into an acne-braille mash-up that, when coupled with the lack of muscle tone, weight gain, sleep-deprived eyes, thin hair showing a year’s worth of grown out roots (with so much grey!), has me recoiling from mirrors. I told my doctor that I felt like that scene in The Exorcist where the skin on the girl’s stomach spells out “help me“. It was like the needle slid across the record… The Good Doctor and her trainee internist looked at me with heads cocked and eyebrows furrowed and I could hear the clock’s second hand ticking around… “Oh, nevermind,” I said. “I just mean my body is trying to tell me something.” My point was, there has to be a logical explanation. My body is pushing  from the inside out into every pore and I should be able to read its message. I should, after all these years, know its language.

So creepy... So sorry.

So creepy… So sorry.

A few happy notes to help get that image out of your head: our Cherry Blossom tree is in full bloom, raining salubrious pink petals all over the garden. My sleep is ever so slightly better. I’m starting Chinese herbs next week and will probably add back legumes to my diet after that. I managed to organise all of our finances for tax time. My husband’s sleep apnea is nothing to worry about. A bird just hopped by my window with a tuft of what was obviously my dog’s golden hair held in its beak and I’m thrilled to think, after how much he has terrorised them, that his fur will do a little community service in a nest somewhere. My friend Z. and her beautiful baby girl came to visit yesterday. My family is healthy. And Game of Thrones has started.

Title Credit