Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.
But that’s exactly what it did.
Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.
I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.
Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.
A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.
The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.
I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)
I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.
For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.
If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.
I regret nothing.
♥ a rainbow at night