Tag Archives: anaphylaxis

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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), which is 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:

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. 

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Best Endocrinologist Ever.

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

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

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

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

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

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

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

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

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

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

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Oh, I’ll be free… (immunoglobulin infusion success)

The first time I ever passed out was in a blood plasma donation clinic in Madison, Wisconsin. My brother, who had attended the University of Wisconsin before I did, tipped me off that they paid quite well for plasma, so every so often I would go spend a few hours in a big comfy chair with my vein tapped. On this particular day, I suddenly got very dizzy, nauseous and clammy and the next thing I knew I was coming to with ice packs under my neck and the chair tipped all the way back so my feet were in the air. I was sweaty and shaky, but I stayed until the plasmapheresis was over and got my cash. I didn’t think twice about it and continued to donate plasma until one day, during the prescreening tests, I came up positive for heroin. It turns out it was because of the poppy seed muffin I had for breakfast, but it didn’t matter, I was not allowed to give plasma again. One abnormal test and you were no longer a candidate. I never asked what plasma was used for and it certainly never crossed my mind that I, myself, may need a medication made from thousands of people’s plasma donations.

I’ve been getting weekly immunoglobulin infusions for 4 months now and it’s become routine (prior posts about this treatment can be found here and here). Not only routine, but to keep the success going, my superstition causes me to keep everything identical each time. I drink 4 liters of water the day before, the day of and the day after my infusions. Every Monday, I tidy up, run the Roomba and take a shower. I drink electrolytes, make my chicken and vegetable soup and don’t take any supplements. I take 3mg Prednisone, remove the saline bag and Gamunex from the fridge and wrap the fluids in my heating pad. When my nurse arrives, I get into bed and she hooks up the IV and sets the pump. Half an hour later, I take 650mg Tylenol, 25mg Benadryl and 10mg Zantac and then, before the Benadryl kicks in, I prep the Gamunex (I have to suck it from the vial into a fat syringe, which is surprisingly hard to do and painful on the hands). After the saline has been running for an hour, I insert 4 subcutaneous needles into my thighs. I could use wider tubing (for a faster infusion rate) or fewer needles, but, again, I’m sticking with what works, even if it’s not the norm for other patients. For the first few months, I did change where I inserted the needles, trying different areas on my belly and legs, but now I stick with the inner thighs which proved the least painful for me. I then fall into an antihistamine-stupour sleep and my (wonderful) nurse leaves once my husband gets home. In theory, she could leave as soon as she has inserted the IV catheter, which would be a half hour max, but because of my history of reactions and anaphylaxis, she’s extra cautious. By 8pm, I can disconnect the IV, remove the infusion needles and go downstairs to make dinner (this treatment makes me ravenous).

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When I first started infusions, I would have to take more Tylenol and Benadryl at around 9pm, my sleep would be horrid for a few nights from the steroids and I’d be dragging and headachy for at least a day afterwards. Recently, besides sleep, which will be my nightly nemesis forevermore, it seems, I haven’t had any problems. No need for extra meds, no dragging, no headache (except later in the week, which could be because I drastically drop off my hydration). In fact, it almost feels like my body is eagerly drinking up the infusions each week. In fact… the last 5 or 6 weeks have been… so nervous to say it (cover your ears, gods!)… good. Some of the best weeks I can remember. I feel freer — less restricted by pain, less confined by finite energy reserves, able to push boundaries without fear. My headaches have been more infrequent, my skin is better, my debilitating neuro symptoms have been more intermittent. I’ve been driving to nearby appointments again and I’ve been able to talk to the point of being hoarse, but without a weak voice. This last thing is very exciting to me.

My pilot brother was here on a layover and I was able to talk and laugh with him for almost 6 hours. My voice was tired, as if it were an unused-muscle, but it wasn’t weak in that way it’s been for years where I could barely contract the muscles to get the air past my vocal cords (or something). I was most definitely dizzy and deflated from the energy expenditure (my brother is a bottomless well of entertainment and conversation), but I didn’t have payback. Before he came, my brother texted me and said, “I’d love to see you, if only for an hour” and I realised how much worse I’d been the last time he visited in 2014: I remember wilting weakly an hour into our animated discussion. What glorious freedom to ignore the lightheadedness and tightening muscles, ignore the raised heart rate and blurring vision (because I’m still very far from normal), and not be terrified of repercussions. To have the option to push through! In the past, I’ve crawled to my room mid-visit — not out of cautiousness, but because there was no other choice and I always feared becoming permanently worse if I strained too much against the restraints.

This uptick could be because of a liter of IV fluids each week — it would explain why I’ve been having bad days later in the week — but I don’t think so. I usually feel kind of puffy and swollen afterwards and my blood pressure hasn’t increased at all; it stays steadily around 85/45. We’re considering experimentally doing some infusions without fluids and see how I get on, but I’m hesitant because, like I said, I like to keep everything consistent. Also, in the past I’ve asked so many doctors to help me with a trial of weekly IV fluids to see if it would help dysautonomia symptoms, now that I have them, I don’t want to give them up.

I want to mention one small thing that I’m incredibly excited about, which will sound so insignificant to most people. About a year into this illness, a few things happened to my body seemingly overnight and they always make me quite sad. The whites of my eyes changed colour, vertical ridges appeared on my once-smooth nails and I became allergic to my platinum engagement ring, which had been my grandmother’s and I’d worn 24 hours a day for years. Every so often over the past 3 years, I would put my ring on and, after a few days, I’d develop big itchy, sore bumps and discoloured skin and have to take it off again. I tried again just after Christmas and, 4 weeks later, I’m still wearing it with no problems. I want to add loads of exclamation points to this!!!!!! For me, that is so much more encouraging than IgG blood tests in the normal range or being able to walk more steps each day. My body has stopped rejecting something — a precious thing — that swiftly angered it over and over for so long. Rejoice. 🙂

Feeling emboldened, I asked my doctor if we could increase the dose or the frequency of my infusions or if I could add in a new treatment (antifungals, antivirals etc.). She said no — and I quote: “You are exactly where I want you to be.” That is so great to hear and such a reversal from my usual position of moving much more slowly than my doctors would like. She wants to continue my treatment indefinitely, raise my IgG levels as much as possible and then retest for infections in about 6 months to get a new baseline.

Insurance coverage always scares me; I’ve heard such horror stories of the battles to get treatment approved and, even after approval, actually paid for. My infusion bills were $943 for the first 3 months and I feel very fortunate that it’s so low. SCIG is the only thing that I can definitely say has helped in 4.5 years of being sick and, after 6 doctors refused to help me get the treatment, I feel immeasurably grateful to Dr. I for not only suggesting IVIG herself (I didn’t bother to ask because I’d given up at that stage), but allowing me to start on such a low dosage and increase slowly. No immunologist would have agreed to this. Yesterday I got this letter and almost wept (with joy). Thank you to the good doctors and nurses, to everyone that donates plasma (especially the broke college students) and even (in this case) to the all-powerful insurance companies who help perpetuate this dysfunctional healthcare system.

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I wrote this post on Thursday, the day after I’d driven to the dog park by myself, feeling victorious, and delighted my Bowie by walking further around the path than I have since being sick. I was still doing okay the next day and wanted to finally update everyone on my exciting progress.

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I’m not saying the chronic illness gods read my blog post draft and decided to tip the scales in the other direction because that’s just crazy nonsense, everyone knows that. But I did wake up not very good yesterday and I’m even worse today, with a bad migraine. Don’t get me wrong, I constantly remind myself that my husband used to have to wash my hair, but it’s still difficult to let yourself get a little bit excited (and in reality, “get a little bit excited” in my world means I’m thinking, “I’M GETTING BETTER! THIS IS THE YEAR! I’M GOING TO LEAVE THIS DISEASE BEHIND! I’LL BE FREE!”) and then have such a harsh reminder. Maybe the difference now is… I’m not scared.

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Finally getting the first immunoglobulin infusion…

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The IgG infusion didn’t happen. They called me and said they were missing some small tube or something that was needed for my pediatric dose. It’s a little frustrating since they had literally months notice, but they have been excellent through this entire process–communicative, understanding, informative–so, I’m not annoyed. They asked if I’d like to do last Thursday instead, but I didn’t want to risk any reaction with my period, which came early last month. All I know for sure about anaphylaxis and angioedema is that they happen during a perfect storm of triggers (food, mood, hormones, hydration, pain) that is very hard to predict or control, but almost always involves my menstrual cycle and that is the one thing I can avoid. In the end, my period did come early, so I’m glad I made the choice to wait on the SCIG.

Today is the day. The nurse gets here in a few hours. I’m not out of bed yet. I’m in a lot of pain today and I was awake in the night with terrible vertigo. Every time I turned my head and changed position, the room lurched and woke me. I think it’s probably from the full dose of Zyrtec and Zantac I took yesterday, which I’ve never done before, but it could very well be payback from the 4+ hour journey to the dysautonomia specialist two days ago (more on that anon).

Anyway, the ball is rolling, the die has been cast, the airplane doors are closed (that’s what I used to tell myself when I was nervous about flying–once the doors are closed, it’s out of your hands, so no point in fretting anymore), so it’s happening and I am focusing all my attention on how incredible it will be to have a treatment that might help me feel better. Honestly, I’m dreading the premedications (Benadryl, Prednisone, Zantac, Tylenol) more than the IgG. I already know they do a number on my sensitive, unable-to-detox body.

Please wish me luck and send good juju this way. It makes a difference, I know it does. Thank you for holding me up. As Clarence said, “Remember, no [wo]man is a failure who has friends. Thanks for the wings.” ❤

Addendum: it just occurred to me that I didn’t specifically tell the infusion company to tell the nurse not to wear perfume, so I called her and she said, “Oh, I do wear body spray because I hit menopause and I can smell myself.” OMG. Body spray? She kindly said she would stop by her house and take a quick shower.
“I buy whatever shampoo is on sale, so I hope it’s not too smelly,” she said.
Gulp.
“No, I’m sure it’ll be fine.”
She then said, “I understand about sensitive patients. Remind me to tell you about the lady who was severely allergic to cats.”
Oh, for fuck’s sake.
“I’m very allergic to cats,” I told her.
“Oh, I have cats, so I’ll change my clothes, too.”
This is a nightmare.
She ended with (I kid you not): “I’ll tell you some horror stories when I get there.”

I’m vacillating between guilt at putting someone out (she was SO nice and sweet), frustration at my ridiculous body and total disbelief that a home-care nurse would wear body spray to visit patients and that the office didn’t explain my sensitives to her (they also didn’t tell her about my history of idiopathic anaphylaxis or that I have two big dogs. She said she just got a name and address). Please please please let this go okay.

Second addendum: the nurse is incredibly nice and lives very close to me, so the shower wasn’t a big deal and she doesn’t have a heavy smell at all. We’re half way through the IgG and the saline fluids. All good so far. 💪

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That's my abdomen--just one site for such a small dose.