UPDATED Emergency and Surgery Protocol for MCAS and ME

I am reposting this post because I’ve updated my protocol to include some info from my doctor, David Kaufman. There will be another version once I finish my EDS addendum (although there is some EDS info in this protocol, like cervical spine precautions during intubation and bleeding risks, I wanted to separate the bulk of EDS info because it is not something that weighs heavily in my particular case).

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I started writing an emergency protocol back in 2015 when my mast cell reactions were scaring me with their unpredictability. I wanted something comprehensive, in writing, for anesthesia teams in the case of a planned surgery, but also something that my husband could hand to paramedics or emergency room doctors, if I couldn’t speak for myself. It was a massive undertaking because I tracked down every link and reference I could find about medication and surgery precautions for patients with mast cell diseases and ME. I wanted to gather all the information that was pertinent to me — my particular case — and edit it down to something manageable. I put together something passable and then moved it to the back burner for the last 4 years.

Last week I saw a new GI doctor who was emphatic that I get a colonoscopy and endoscopy at the same time and with anesthesia. I have been completely enema-dependent for years and, honestly, it’s exhausting. My previous GI doctor told me it was due to anatomical abnormalities (an MRI found pelvic floor dysfunction with cystocele, rectocele, sigmoidocele) and that I’d likely need enemas for the rest of my life, but it feels like the issues are getting worse and the new doctor didn’t want to throw medications at the problem without knowing exactly what she’s dealing with.

I cannot imagine voluntarily going under anesthesia. All of my worst reactions in the past 7 years have been to medications and my fear of trying new ones — especially intravenous medications — is so pronounced that I vowed only to agree to anesthesia if I was in a life-threatening situation (or couldn’t speak for myself). How could I be lying on a gurney with a peripheral IV, knowing they are about to inject multiple anesthetic drugs and not jump up and run out of the room? I wouldn’t be able to advocate for myself… I could die for a colonoscopy! So, I left the appointment with a sense of doom that only deepened when I started to feel a new ache in my lower abdomen. It got progressively worse over 3 days, the ache turned to pain and, what I thought of as run-of-the-mill bowel inflammation started to seem like something else. Gallstones? Bladder infection? I got out my emergency protocol notes and spent about 20 hours over the next few days rewriting everything, feeling like I might be working against the clock if this was something like appendicitis. Then I woke up last Sunday to such severe lower abdominal pain that I couldn’t move, could barely breathe or speak. I was shaking all over, in a cold sweat, nauseous and felt like I was on the brink of passing out. My husband wanted to call an ambulance, but I said no, hoping it was some sort of spasm that would pass. And it did… but not entirely. The ache and twinging remained for a few more days. It’s gone now and I think it was my dastardly bowels, after all, but it was bad and it scared me. It’s like the gods heard me say, “no way am I getting a colonoscopy” and decided to stab and twist their Elizabeth voodoo doll to make sure I got the point that there’s a problem I can’t continue to ignore.

The upshot of all this is, I finished the emergency protocol and I wanted to share it here, in case it could be useful to anyone else. There are a few important points about it, though:

  1. When I started, it was for personal use and I didn’t keep track of references. I will go back and gather all the links and add them to this article, but I have no idea how long it will take me and I wanted to share this sooner, rather than later. If you see your own information here without credit, please understand I will add a link to your article/blog/website! If you want me to do it asap, feel free to leave a comment.
  2. This protocol concentrates heavily on mast cell precautions because MCAS has caused my life-threatening reactions such as anaphylaxis and profound hypotension. It does not mention ME or CFS, although I researched and included ME resources, such as Dr. Lapp’s recommendations (Appendix E of the Primer for Clinical Practicioners).
  3. I have an EDS diagnosis (Ehlers-Danlos Syndrome — a connective tissue disorder), which can cause serious surgical complications. There are a lot of guidelines out there for EDS patients and, as yet, I have not researched any of them. It wasn’t until recently that I started to take this diagnosis more seriously and I still haven’t had the gumption to jump down the research rabbit hole, but, once I do, I will be updating my surgery protocol with any additional EDS precautions that are pertinent to my situation.
  4. It bears repeating: This is not medical advice of any kind. This is my personal protocol, for my personal situation. You may be more or less reactive than I am, you may have normal or high blood pressure or you may be far more disabled and need many more accommodations… But, I hope it can be of use as a jumping-off point. Please consult with your doctor.
  5. The link below is a printable pdf file, which is formatted properly, but if you need it in a different format so that you can copy and paste certain parts into your own protocol, don’t hesitate to leave a comment or email me at akaemilo@gmail.com, and I will send you a Word doc or Google doc version.

 

Updated Elizabeth Milo Emergency and Surgery Protocol

 

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The future might be the past…

I’m going through a rough(er) patch. My body is scaring me because I can’t find any cause for recent episodes. One of the good things these past few years, is that I can usually pinpoint a reason for reactions and downturns. Even after the last horrific night I suffered with apparently no reason (it was last November, during my Dad’s very short visit and I couldn’t blame it on overdoing it because I didn’t), I started spotting late the next day and–light bulb!–it was my period coming a week early (I can have terrible reactions on the day before or the first day of menstruation).

When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis.

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Then Saturday evening, my tongue swelled up for the first time in 7 months for no reason that I can figure out. I had tongue swelling a few times last year, but I could always explain it (dental work, sauna, vancomycin). Even more concerning, it’s still swollen now, 45 hours later and that’s very unusual. I took Benadryl the last 2 nights, squirting it onto the affected area of my tongue, as I’ve been told to do (this is also unusual for me–I am extremely judicious with Benadryl, only taking it when absolutely necessary) and the swelling still hasn’t resolved. I can’t remember another time it lasted this long — maybe, again, 17 years ago during anaphylaxis.

Then yesterday afternoon, I was hit with vertigo after spending too much time on my feet, preparing food. Vertigo is rare for me and is a big red flag. It’s very different from dizziness and I don’t think it has anything to do with blood pressure. I went to bed for a while, hoping it would resolve, but, when I got up, I was still slamming into walls, as if I were walking the hallway on a lurching boat. The last 2 times I experienced vertigo were 5 months ago during–shocker–my period and a year ago on the morning we were leaving for California, after killing myself the day before to finish packing. I thought it might be something to do with my neck, which always has issues, so I used heat, then my cervical traction device, then an ice pack. I think it helped; the vertigo had mostly abated by the time I went to bed.

But…

A few hours after I went to sleep, I woke up with horrible shakes and chills and drenching sweats. My BP was low (but low-normal for me: 80/50), HR was a little high, temperature was 96 degrees, and O2 was 95%. It was 7 terrible hours that felt viral, like when I first got sick, but was probably mast cells, what with the swollen tongue and all. I finally got up to do that thing that other chronically ill people might understand: put on clothes in case I had to go to the hospital. On a normal day, I might sit around in my dressing gown with unbrushed hair all day, but when there could be a chance I’m going to the hospital, I try to make sure I’m not naked. I also make sure I’m not wearing anything I care about — I’ve lost clothes in the hospital before.

Strangely, I had almost an identical episode on this exact day last year. Here’s a screenshot from my calendar:

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After the most stable autumn and winter I’ve had since being sick, this downturn–this piling on of relatively rare, red-flag symptoms–scares me. My sleep has gone to hell in the last few weeks, which compounds everything by stealing energy and increasing pain. Plus, I’m exacerbating things by holding tight to my “best winter yet” narrative and by fighting so hard to maintain the level of functioning I’ve had this past year, rather than pulling way back and resting aggressively.

My ND says the naturopathic philosophy is that you will go back through previous stages of health and experience earlier symptoms as you travel the healing journey back to where you once were. I’ve latched onto this theory to anchor myself and dispel some fear. The resurgence of all these old symptoms means there has been a shift in my system — but maybe it’s a positive shift, even though it doesn’t feel that way. I’ve gained weight since starting IVIG, over 8% of my norm, which is not insignificant, especially on someone as small as I am. I’m at my heaviest since being sick and, although I’m not overweight, I’ve lost muscle tone the last 7 years and I don’t have the physical ability to burn fat and build muscle, so I hope this trajectory doesn’t continue. My doctor thought this, also, pointed towards a shift in my body: maybe I’ve started absorbing nutrients better. Acne is coming back a little, too. Maybe my hair will grow back! Or the next thing will be that I’ll catch a cold for the first time in 8 years… (And because I really don’t want this to happen, no matter what it might indicate about a calming immune system: knock on wood, toba, toba, spit over shoulder: patuey.)

But, as I lie here, shaky, with my swollen tongue, chronicling these last few weeks (minus the osteoporosis diagnosis and extremely elevated post-antibiotics SIBO test results, both of which I’ll have to write about at a different time), none of it feels like a positive shift and I worry about what I should eat so as not to add to mast cell reactivity and whether I should stay in bed and lie still, even though longed-for Seattle sun is streaming through the windows and I’d love to make some breakfast and sit at my table watching Riley lounge in the grass, soaking up the rays, and the hummingbirds diving around our feeders.

Mast Cell Activation May Underlie Chronic Fatigue Syndrome — Medscape

SALT LAKE CITY, UT — Mast cell activation syndrome (MCAS) may be an overlooked yet potentially treatable contributor to the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), say physicians who specialize in ME/CFS and its manifestations.

The subject was discussed during a 2-day clinician summit held March 2 to 3, 2018, during which 13 panelists met to begin developing expert consensus guidance for primary care and specialist physicians for the management of the complex multisystem illness ME/CFS, and to recommend research priorities.

“ME/CFS is a descriptive diagnosis of a bunch of symptoms, but it says nothing about what’s causing the symptoms, which is probably part of the reason it’s so hard for it to get recognition. So, the question becomes, What other pathology is driving this illness and making the person feel so ill? I think mast cell activation is one of those drivers, whether cause, effect, or perpetuator, I don’t know,” internist David Kaufman, MD, who practices in Mountain View, California, told Medscape Medical News.

MCAS is a recently described collection of signs and symptoms involving several different organ systems, that, as with ME/CFS itself, do not typically cause abnormalities in routine laboratory or radiologic testing. Proposed diagnostic criteria were published in 2010 in the Journal of Allergy and Clinical Immunology.

Kaufman first learned about MCAS about 5 years ago from a patient who introduced him to the published work of mast cell expert Lawrence Afrin, MD. “I spoke to him and then I started looking for it, and the more I looked, the more I found it,” Kaufman said, estimating that he has identified MCAS in roughly half his patients who meet ME/CFS criteria.

Indeed, summit panel member Charles W. Lapp, MD, who recently retired from his ME/CFS and fibromyalgia practice in Charlotte, North Carolina, told Medscape Medical News, “I see a lot of this. I think it’s one of the many overlap syndromes that we’ve been missing for years.”

Another panel member, New York City ME/CFS specialist Susan M. Levine, MD, also said she sees MCAS frequently. “I suspect 50% to 60% of ME/CFS patients have it. It’s a very new concept.”

In Levine’s experience, MCAS often manifests in patients being unable to tolerate certain foods or medications. “If we can reduce the mast cell problem, we can facilitate taking other drugs to treat ME/CFS,” she said. However, she also cautioned, “It’s going to be a subset, not all ME/CFS patients.”

Clinical Assessment and Laboratory Testing

As discussed at the summit, for patients who meet ME/CFS criteria, the next step is to drill down into individual patients’ symptoms and address treatable abnormalities. Investigation for MCAS may yield such findings among those who exhibit episodic symptoms consistent with mast cell mediator release affecting two or more of the following areas:

  • Skin: urticaria, angioedema, flushing
  • Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping
  • Cardiovascular: hypotensive syncope or near syncope, tachycardia
  • Respiratory: wheezing
  • Naso-ocular: conjunctival injection, pruritus, nasal stuffiness

Symptoms can wax and wane over years and range from mild to severe/debilitating. It is important to ask about triggers, Kaufman advised. “The patient is usually aware of what makes them feel worse.”

Routine laboratory assessments include complete blood count with differential, complete metabolic panel, magnesium, and prothrombin time/partial thromboplastin time.

More specific laboratory testing can be tricky, as the samples must be kept cold. These include serum tryptase, chromogranin A, plasma prostaglandin D2, histamine, heparin, a variety of random and 24-hour urinary prostaglandins, and urinary leukotriene E4.

For patients who have had a prior biopsy, the saved sample can be stained for mast cells.

Kaufman said that initially after he learned about MCAS, he would only run the laboratory tests in patients with suggestive clinical history, such as food sensitivities/triggers, rashes, hives, temperature intolerance, or chemical sensitivities. “But ultimately, I had patients [for whom] I couldn’t figure out what was going on; I would check, and started finding positives in patients I wasn’t suspicious of.”

So, now he just tests for it in all his patients with ME/CFS. “It’s bigger than allergy,” he remarked.

Treatment May Ease Some ME/CFS Symptoms

Treatment of MCAS involves trigger avoidance as possible; H1 receptor antagonists such as loratadine, cetirizine, or fexofenadine (up to double the usual doses); H2 histamine receptor antagonists including famotidine or ranitidine; and mast cell membrane-stabilizers such as cromolyn sodium. Slow-release vitamin C can also help in inhibiting mast cells.

Over-the-counter plant flavonoids such as quercetin also may be helpful, typically at high doses (up to 1000 mg three times daily). “There’s a long list of medications that either quiet down mast cell activation or block the receptor,” Kaufman noted.

But despite that, without controlled trials, it is difficult to determine the exact clinical effects of blocking mast cells, especially as these patients tend to be taking many other medications. And in the context of ME/CFS, the extent to which suppressing mast cell activity addresses the core symptoms of fatigue, postexertional malaise, orthostatic intolerance, and cognitive dysfunction is unclear.

Kaufman noted, “I think treatment clearly helps with the fatigue because they’re not reacting to everything. It improves gastrointestinal symptoms, so they can eat better…. I have seen [postural orthostatic tachycardia syndrome] improve, but I have to say I also give meds for dysautonomia, so I can’t be sure.”

Lapp said that in his experience, “[Patients with ME/CFS] aren’t cured, but do get better. [Blocking mast cell activity] gets rid of dizziness, fatigue, nausea, and light sensitivity.”

Levine pointed out, “We’re just at the beginning of identifying this patient subset and thinking what makes sense to try…. One thing that’s sure is that the drugs are pretty safe,” she said, adding that when it comes to working up patients with ME/CFS for MCAS, “There only seem to be good things that can happen.”

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.

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.

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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. 😉

Finally Starting IgG Infusions.

After 13 months of buildup, I’m finally scheduled for my first IgG infusion. Dr. Chia recommended I get IVIG (intravenous immunoglobulin) in August, 2014. When I came back to Seattle, I asked my GP about it and she said my total IgG wasn’t low enough (allopathic guidelines say total IgG < 400mg/dL) to warrant therapy. I asked my rheumatologist about it and he said because I have no evidence of persistent infections, I’d have to get an antibody vaccine provocation. I’m sure there’s a name for this, but, essentially, you are given a vaccine and then they look for an appropriate rise in antibody titers to that vaccine. If your body doesn’t mount a response, they can approve IVIG. Well, of course, I’m never getting a vaccination again, so that’s out of the question. I asked my main ND, Dr. W, and she said she didn’t have the ability to order it, but suggested oral IgG, which I never started because… another supplement, ugh. So, I’d given up on it when I went to a new ND, Dr. I, and I didn’t even think to mention it. After reviewing all my labs, the first thing she recommended was IVIG and, just like that, she got it approved. But… not so fast. That was 10 months ago and there was a lot of work to be done.

(As an aside, I do wonder if I’ve had low immunoglobulins my whole life and nobody looked into it. Or maybe it waxed and waned. I had chronic bronchitis, pneumonia and asthma as a child and, as an adult, got a chest infection pretty much once a year–probably more when I was smoking–but never thought this was unusual. Here’s a short article about one girl’s SCIG from infancy. It has some photos of infusions.)

Before trying IVIG, we decided I should try SCIG (sub-cutaneous IgG) because there are fewer side effects for most people. Before SCIG, I needed to test out the medications necessary to stave off anaphylaxis, aseptic meningitis, migraines and a host of other issues that can develop. Before testing the pre-meds, I had to make sure I could handle IV saline infusions since the last one I had caused a leaky anaphylactoid reaction. Before trying IV fluids, she wanted me to be on bioidentical progesterone, pregnenolone and DHEA, not only because my hormones are low, but also because there is evidence that hormone therapy can calm reactivity. And all of this has to be danced around my menstrual cycle because I’m somewhat reactive during ovulation and extremely reactive during my period. We also had to wait for me to get my nerve up because so much of this is dependent on my comfort level and, when anaphylaxis could be involved, I’m never comfortable.

I have friends in mast cell groups who “anaphylax” often, repeatedly, sometimes daily. I can’t imagine this. There are different levels of anaphylaxis, so I suppose these could be lower level reactions, but my episodes of anaphylaxis were full-blown and very scary, mostly because of the difficulty breathing. I really thought I would die and I probably have some PTSD from those experiences. No amount of sickness scares me as much as having a sudden anaphylactic reaction that kills me. I don’t want to get meningitis or be saddled with chronic migraines like my friend Jackie, but those are not at the top of my list of fears.

Having said that, I pay attention to comments like this since I, too, once had a CSF leak from a lumbar puncture and it was the 10 on my pain scale to which I now compare everything else. IVIG can mess you up:

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(FYI, I found this website with tons of allergy information and graphics that might be interesting.)

So, I’ve been on topical, compounded hormones for almost a year and they haven’t raised my serum levels much, but I think they’ve helped with sleep (they also cause greasy skin and hair, like I’m going through puberty, but I’m willing to put up with that). At the beginning of this year, I was reeling from the terrible nocturnal reactions and tongue swelling I had been having, so I wasn’t willing to try anything new. Finally, in May, I got around to testing a tiny bag of IV saline (it went fine, although the whole appointment and clinic visit was a total shitshow which lead me to write two long emails to my doctor. I came very close to not going back, but I really want this treatment). Then in July, I had a full liter infused over 6 hours (a very long time for 2 bags of saline). Everything went fine, no problems (but no boost in blood pressure or energy, either), which meant it was time to schedule SCIG, but, once I started researching in earnest, I realised that there were so many questions I needed answered.

IVIG is often done in a hospital setting if the person is high-risk. I would prefer to have more than just a nurse present if I went into shock (and, by all accounts, nurses’ competency levels are highly variable). My doctor didn’t know how to get this done because the company with which she works does home infusions; she recommended I ask one of my MDs for help. More time ticked by while I emailed my GP (who has only met me once), my endocrinologist and my rheumatologist (both of whom have only met me a few times) for help with this. They all said no. I talked to the infusion company (who have been incredibly helpful thus far) and they offered to do it in their “infusion suite”, but there are no doctors present and their protocol is to call 911 if there is an emergency. Well, I live a few minutes from a fire house and an emergency room, so home seems just as safe as the infusion suite, if not more so since my husband, who is far-too-intimately acquainted with my history, can be there.

Scrolling through Facebook groups, I realise I have to learn how many injection sites I’ll have and whether to use my belly or thighs and the needle size and how many ml you can put in any one area and leakage, hardness, weals etc. etc. My good friend, who is braving his way through gruelling IVIG treatment, has been giving me advice every step of the way, which is invaluable when your doctor doesn’t tell you exactly what the process is or the importance of hydrating or the effects of IgA.

Different brands of IgG have varying amounts of IgA in them. In general, lower IgA equals fewer reactions and, if blood tests show that you have very low IgA or anti-IgA antibodies, you will qualify for the IgA-depleted IgG brands. Isn’t this something my doctor should have mentioned? She wrote the prescription for Gamunex and I asked her if she would consider Gammagard or Hyqvia, both of which have lower IgA. but she said it wasn’t necessary. And she may be right, but wouldn’t you want to use every tool available to keep your highly-reactive patient as safe as possible? My IgA has been slightly low in the past, so, right before I was meant to schedule my first infusion, I asked my doctor, “Can you test me to see if I have anti-IgA antibodies?” and she said yes. Doesn’t this seem like something that should have been done originally without my asking, considering my history?? Maddening.

The IgA test was meant to take a week to come back and I didn’t get the results for 3 weeks, so here we are in September. One of the IgA subclasses was low out of range, but I didn’t have anti-IgA antibodies, so I couldn’t really make a case for changing from Gamunex. And I wanted to do it as soon as possible rather than wait until after my next period, which would put us in October, so I scheduled it for this coming Tuesday.

My doctor wants me to take 2 Tylenol (Paracetamol), 2 Benadryl and 3mg of Prednisone (Prednisolone) before my treatment. I needed to test these premeds because last year when I took Prednisone, I worked up very slowly to 3mg, I only ever take 1 Tylenol at a time and I have been VERY sensitive to Benadryl since having M.E.–plus I’ve never taken the combo. I realised my EpiPens were expired and so were my two boxes of Benadryl and my emergency Prednisone. It took more waiting time for new prescriptions to be called in and finding a good day for my husband to pick them up. When he did, I realised they had given me 10mg pills of Prednisone rather than 1mg (always carefully inspect your pills!) and he had to go back to the pharmacy for a fourth time in a week. Poor guy.

Last week I tried 1 Tylenol, 1 Benadryl and 1.5mg of Prednisone (using my expired stash). About half an hour later, I got a tight chest. Not enough to scare me, but enough to put me off trying more Benadryl. Then I got very shaky and drowsy and had low blood pressure. After I slept for about an hour, I was incredibly thirsty and hungry and then, about 4 hours after taking them, I felt better than I have in a while and was chatty and good-humoured. Success.

Last night I tried again, this time with 2 Tylenol, 1 Benadryl and 3mg of (fresh) Prednisone. I couldn’t bring myself to take 2 Benadryl. The good news is, I didn’t get the tight chest and shakes this time, I just fell asleep for an hour. The bad news is, I didn’t feel good afterwards at all. I had a headache, my eyes and lips felt swollen, I was completely parched and felt really out of it and hungover. But, this is HUGE for me. It is so incredibly exciting to take a bunch of medications and come out unscathed. I’ve been wanting to test this for ages so I have some confidence that, if I’m given IV Benadryl and/or steroids in the event of an emergency, I’ll be okay.

A few final hurdles: I’m scrambling to get two blood draws on Monday before starting SCIG. Dr. W has been trying to get me to do regular “hydrotherapy” for a year and a half. It’s basically hot and cold towels over my torso and back, coupled with electrical stimulation (instructions for doing it at home can be found here). I never wanted to expend the energy until she told me about a patient of hers with hypogammaglobulinemia whose IgG levels came into the normal range after 6 weeks of hydro constitutionals. She was willing to test my total IgG before and after if I did this experiment. I love quantifiable evidence! So I started in August and, even though it’s only been 5 weeks, I want to get my levels tested again before starting SCIG.

The second thing is a babesia test. I’ve been asking my ND about this since June–in person during appointments, in email to her and also to her assistant, who keeps saying she has to get the doctor to sign the form–and can’t seem to get anywhere. They say yes, but it never happens. How hard could it be to sign a requisition form?? Her last message to me said I could get my blood drawn if I make another follow-up appointment. Are you kidding me? That seems downright cruel when we’ve discussed this at my last 3 appointments and she only works two days a week. I talked to the director of Igenex, the lab that does the testing, and he said I should definitely get it done before SCIG, so I finally just ordered the test kit myself and I’m going to bring it to my other doctor, Dr. W, on Monday and beg her to do the blood draw along with the total IgG. I don’t understand why everything has to be such a battle. It’s exhausting and infuriating.

I’m trying to not be annoyed at the difficult communication with my SCIG doctor because, not only is she the only one getting me this treatment, but she was willing to start me at 1 gram the first week (unheard of), building up to 5 grams over 5 weeks. She was also willing to prescribe saline infusions along with the treatment. Only 500ml each time, but every little bit of hydration helps mitigate side effects. I’m deeply grateful to have someone willing to do that when an immunologist wouldn’t even have a conversation about it.

Wish me luck. I’m going to receive all the supplies by courier on Monday and then Tuesday afternoon a nurse will come over, start the drip and show me how to do the sub-cutaneous injections. I believe after that, I’m on my own. Or, maybe because I’m getting IV fluids each week, a nurse will have to come, I don’t know. I will take Zyrtec and hydrate like mad the days before and after… But, friends and family, I am very scared. Even though it’s SCIG and not IVIG and even though I’m starting at a laughably low dose, I’m still scared. I will eat fairly low-histamine in the next few days and do my breathing exercises and meditations before, during and after treatment, but still… I want this to be the beginning not the end. Are my affairs in order? Do you all know how much I love you? Remember: when I first got sick and thought I was dying, I wrote down directives and requests. Husband, remember: the notebook in my bedside table.

Now everyone knock on wood for me and spit over your shoulders. Toba toba.