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).


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.



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.


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.

Title Credit


Sweet Smell of Success (So far)

I am so proud of myself for sticking to my guns and waiting to do the immunoglobulin infusion when it felt right for me, at the lowest dose possible, with a bag of saline and a showered, no-scent nurse. I feel fine. I’m stiff, sore and tired, a bit more than normal, but no big deal. The infusion site on my abdomen is sore if it touches something, but no big deal. I didn’t need to ice my belly and I hardly felt the needle going in. I think next time, though, I’ll try my thighs because I do daily abdominal massage and castor oil packs for my constipation, which I can’t do now.

My vertigo from yesterday is gone (maybe it was a neck issue in my sleep) and today, inside, I am vibrating with excitement. Hell yes!! Success! I’m usually either so impatient to try something, I take too much (Cromolyn) or I don’t want to face the adjustment period/eventual withdrawals/possible reactions, so I postpone forever (Equilibrant, antidepressants, B12). But I did this the right way. I waited, I tested everything I needed to test, I didn’t jump the gun and start where my doctor wanted me to start (3mg), I started low and it was no problem.

My biggest excitement, honestly, is having a positive experience with the premedications and it gives me hope that my reactivity has calmed down. I didn’t even fall into a drugged stupour like I did when I tested the premeds. I have no horrible antihistamine-poisoning-hangover feeling, no headache, my blood pressure has stayed stable at around 85/55 (I know, too low, but stable low). Since all these sensitivities cropped up, I’ve been lucky that my disabling dysmennorhea has abated and I’ve not had any anaphylaxis, collapses, accidents etc. (toba, toba, knock on wood), but I was worried about what I would do in the event that I’d have to have surgery or some emergency procedure. This feels great! I have an arsenal now. I might have done the MRI contrast if I’d had the confidence at the time to pop some Prednisone, Benadryl and Zantac. I’ve still never taken my EpiPen, but, if ever I have to (toba, toba, KOW), maybe I won’t be as sensitive as I was in the past (when an endodontist accidentally put epinephrine in my numbing injection, it felt like I was having a heart attack). I can’t tell you how good this feels. I might finally try daily H1 and H2 blockers to see if they make a difference in how I feel overall. I might sit down with a bottle of wine, salami, aged cheese and kimchi.


I set this all up in our spare room upstairs to keep away from the dogs and so I could sleep if I needed to, but really I could do this anywhere. The saline bag has a carry pouch with a shoulder strap and is infused by a battery-operated pump. Once the needles are in and covered with tape, I could conceivably be on the couch with my dogs, watching TV. The tricky part is navigating the bathroom with one straight arm while carrying the saline pouch and holding the SCIG pump and managing not to rip out any of the needles.


Honestly, the most daunting part of the whole experience is the amount of water I have to force down my gullet. On Thursday, I drank four liters. Yesterday, I drank over five liters and I’m going to try to do the same again today. Having to do this three days a week, every week makes me want to vom. It also wasn’t fun to have a chatty stranger in my house, albeit a very nice, low-maintenance one (I kept worrying that she didn’t have water or snacks and that her back would get sore in the upright chair). She was only here fewer than four hours, but as my dose increases, I assume the time will increase (most of that was infusing 500ml of saline, the IgG itself only took an hour). Next time I’ll just let her know that I want to rest and meditate through the whole thing and I’m hoping after the next few infusions she’ll just be able to hook up my IV and leave and I can place the subcutaneous needle myself and remove the IV at the end.

So, the plan is to double my dose next Friday to two grams, then increase by one gram each week until I’m at five and hold there for a few months. Perhaps even graduate to IVIG eventually. I’m happy this started at the beginning of flu season, too, because that’s what Dr. Chia recommended. He thought I should get a little boost in September and January and also if I traveled anywhere so I would be less in jeopardy of succumbing to a virus that would take me down. And maybe, just maybe, it’ll make me feel better over all. A lady can dream.

Thanks to everyone who sent positive thoughts my way. You carried me through.❤

IV saline experiment… causes angioedema and histamine release.

I had a total meltdown yesterday. As my throat grew more swollen and I grew more alarmed, I finally put it together that I was experiencing an acute angioedema episode. I didn’t recognise what was going on because I usually get a swollen tongue and lips. On Friday, I chalked the edema up to fluid retention from the saline. The spot deep in my throat under my jaw that I mentioned in my last post always itches when I am having an allergic reaction – it’s the canary in the coalmine of my body – but I don’t pay attention to it as closely as I should. This was a slow cooking reaction: laboured breathing and swollen eyes, fingers and sinuses (stuffy nose) on Friday evening, itchy throat spot and heart skipping/arrhythmia started Saturday (both continue today, Tuesday), flushing/extreme overheating on Sunday, and throat closing on Monday, coupled with what felt like body edema – swollen bowel, abdomen, muscles…

Now I know throat closing/laryngeal swelling calls for me to use my Epipen, but, like I said, I didn’t cop on to what was happening until late in the game. Also, I would really have to be on death’s door to voluntarily inject myself with epinephrine. But I was very, very scared. Hence, the meltdown. I actually said to my husband, “Why can’t I just have a peanut allergy – something I can try to avoid?” I actually said, “Why can’t I JUST have M.E.?!” I don’t say those words lightly and, of course, if I could barter away my illnesses, ME would be the first one to go, but it is terrifying to feel like you have no control over anything and living with the threat of a fatal allergic reaction that can’t be identified is the ultimate loss of control.

I’m too tired to explain thoroughly and scientifically, but, basically, angioedema is the same mechanism in the body as urticaria, only in deeper tissues. If it happens in the tongue and throat and lungs, it can kill you. Often, as in my case, there are no identifiable triggers, so you just deal with it when it happens and hope it isn’t serious. It can present with urticaria or without and it can be as severe as anaphylaxis or very mild. If you want to learn more, Medscape has a very comprehensive set of articles (many tabs at the top with many pages per tab- just click on the next page at the bottom and you will go through them all). All of the better information on these types of conditions is relatively new. When I was diagnosed with idiopathic anaphylaxis 12 years ago, blood tests turned up no allergies, so the doctors washed their hands of me. That was it. When I suggested alcohol as a possible culprit, the doctor was disdainful and dismissive. When I mentioned that most times this happened was during my menstrual cycle, I was ignored. Here’s an Epipen, go away. Nobody knew about mast cell activation or histamine intolerance. And, of course, I was right! With my limited knowledge at the time of all things medical, I came up with the common denominators that made sense: booze, period, ibuprofen.

For an excellent article read this:
“The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance.”

A few years ago, when I was diagnosed with autoimmune urticaria and angioedema and the doctor warned me (2 years too late) that people with this condition are more likely to have autoimmune thyroid disease, I asked him why the doctors years ago hadn’t looked into this autoimmune component. He said it was unknown then. He said it was something that only recently came to light. The only other thing he suggested was prophylactic treatment with Zyrtec, which I half-heartedly tried for a few months. No mention of H2 antihistamines or mast cell stabilizers. No mention of H3 or H4 or diamine oxidase. No discussion of mast cell activation, mastocytosis, histamine intolerance, low-histamine diet or any tests – whether reliable or not. No interest in looking into acquired angioedema, bradykinin-mediated angioedema or estrogen-dependent angioedema, all of which don’t respond to antihistamines. So, all of us – the patients – are scrambling along the edges of science. I feel like a surfer on an excruciatingly slow-moving wave. I come up with theories and do my own research and I see it mirrored in others’ blogs, but no doctors are accessible to help and no tests are robust enough to firmly diagnose.

For an excellent summary from another ME-afflicted blogger with mast cell problems (as well as EDS), read Jak’s blog: Mast Cells & Collagen Behaving Badly.

Which brings me back to my meltdown. For the most part it was a silent, immobile and tearless meltdown. I was simply frozen with fear. Saline probably caused a massive histamine release – right in the middle of my low-histamine diet experiment. I brought this situation on myself by requesting the saline. I had a reaction to an innocuous substance that is used to treat allergic reactions! Just like I had reactions to the antihistamines that are used to treat allergic reactions.

I can’t live with ME and angioedema and histamine/mast cell issues and sleep apnea and thyroid disease and crippling periods and a headache that never goes away and reactions to so many drugs!!

Fear of my throat closing more while I slept, fear of sleeping without my CPAP, fear of being woken up constantly by my CPAP, fear of taking an antihistamine, fear of not taking an antihistamine, fear of eating things that cause inflammation or histamine release, fear of losing more weight, fear of being on the pill, fear of having to weather my periods off the pill, fear of living the rest of my life in pain, fear of being in so much pain I have no choice but to take painkillers. What if I break a bone? What if I’m in a car accident? And then, swiftly on the heals of that thought, the fear that sent me into a tailspin: What if I have to go to the hospital? IV saline… IV painkillers… IV Benadryl… Contrast dye… Anesthesia… Surgery… What do I do when I’m older and I can’t avoid some procedure? When I break an already-osteoarthritic hip? What do I do if my body reacts to everything? I’m dead.

Fear of dying. Fear of living in this fear.

My answer to all of it was to throw caution to the wind and eat a bunch of forbidden histamine foods.

This is a perfect segue into part II of my diet post. I realise you are all on tenterhooks waiting to read it, but not yet, not yet.

The most recent article describing IA (idiopathic anaphylaxis), written by Karen Hsu Blatman and Leslie C. Grammer, explains the distinction this way:

Patients with IA-A experience urticaria or angioedema with upper airway compromise such as laryngeal edema, severe pharyngeal edema or massive tongue swelling without other signs of systemic anaphylaxis. Patients with IA-G suffer from urticaria or angioedema with bronchospasm, hypotension, syncope, or gastrointestinal symptoms with or without upper airway compromise. Reference.

IV Saline Experiment


My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.

I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).

The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.

Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.

Hi Dr. XXX,

My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.

The good repercussions:

  • My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
  • My BP was higher than normal Friday night (109/67), but went back down the next day.
  • My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
  • My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
  • I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.

The bad repercussions:

  • The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
  • It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
  • I felt terrible Friday night. Heavy, inflamed, wiped out.
  • My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
  • The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
  • I slept poorly Friday and Saturday nights and woke up too early both days.
  • I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.

Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.

I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.

IMG_20131117_165651-1 (1)

IMG_20131117_164726-1 (1)

IMG_20131117_161323-1 (1)