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. 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. No amount of sickness scares me as much as having a sudden anaphylactic reaction that kills me. I really thought I would die and I probably have some PTSD from those experiences. 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 have friends in mast cell groups who “anaphylax” often, repeatedly, sometimes daily. 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. 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. 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. 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 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.

It has some photos of infusions.)īefore trying IVIG, we decided I should try SCIG (sub-cutaneous IgG) because there are fewer side effects for most people. Here’s a short article about one girl’s SCIG from infancy.

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. (As an aside, I do wonder if I’ve had low immunoglobulins my whole life and nobody looked into it. That was 10 months ago and there was a lot of work to be done. After reviewing all my labs, the first thing she recommended was IVIG and, just like that, she got it approved. I, and I didn’t even think to mention it. So, I’d given up on it when I went to a new 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. Well, of course, I’m never getting a vaccination again, so that’s out of the question. If your body doesn’t mount a response, they can approve IVIG. 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. 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. Chia recommended I get IVIG (intravenous immunoglobulin) in August, 2014. After 13 months of buildup, I’m finally scheduled for my first IgG infusion.

Another brick in the mall igg