For those of you following this blog you know I spent many long months trying to understand what was happening to my body when I developed new unrelenting severe stomach pain. After ~5 months of tests I had my answer: Crohn's disease. The cause of Crohn's is not well understood, but the treatments are essentially all either: 1. Steroids (to suppress the immune system), 2. Biologics (which also inhibit the immune system), and 3. Other varieties of drugs which make the immune system non-existent. The damage and pain of Crohn's comes from high levels of inflammation due to immune system over reacting and attacking tissue in the mucus membranes. The trouble is, I can't take the commonly prescribed immune-suppressive medications because I also have Lyme disease. If I overly suppress my immune system I will allow the infections to flourish, and it would be a hot mess.
Without getting too much into it, the immune system has two tiers: the innate system & the adaptive system. With autoimmune conditions one part is over reacting & at the same time the other part can still be under reacting. So a person with let's say Psoriatic Arthritis can have an active autoimmune condition damaging their joints, but they can also easily catch every cold and virus going around. It's two pronged, and that's why this is so difficult. The common autoimmune medications suppress the entire immune system, opening the door to severe & sometimes fatal infections. Even the "healthiest" person who takes a biologic like Humira can get the flu and wind up in intensive care. It's not great. And since I have Lyme disease it would be a disaster if I suppressed my entire immune system. Because truthfully, I need a stronger immune system as far as Lyme goes & a less aggressive immune system as far as Crohn's goes. I know I know, how absurd!
After learning I had Crohn's we did further testing which confirmed that my immune system was pretty much off the rails in terms of body wide autoimmune cascades, and was now attacking almost all the food I put into my body. I had so many food intolerances & allergies that I hardly had but 5 safe foods I ate without excruciating pain. In between living on a liquid diet & curling up in a ball 24/7 from unrelenting pain, I felt pretty confused and very stressed out. We knew I had to reel in my immune system, but it had to be done delicately and in a way which balanced my immune system vs suppressed it. I was given a few options, did a lot of research & then made a leap of faith.
Around July I began immunotherapy, and boy has it been a rollercoaster ride. I have learned that once you poke the beast (the beast being the immune system), the reactions can and will be sudden & unexpected. I started out on too high of a dose & that initially set me back about 8 weeks, and my next try was again too high which was a second set back. I am slowly finding my footing with it now, and getting closer to the right dose. I will need about 6-12 months of consistent treatment (at the right level) to be able to feel the full effects. I don't want to talk too much about it yet, because it's still very new and too early to judge. But I did want to fill in those of you following along as to what is happening.
I have had some bright spots since I began this treatment, with bursts of time where some symptoms temporarily improved. Those moments were hopeful for me because it tells me that once the pendulum isn't swinging so violently up and down and I can get my immune system leveled, there is hope for feeling more human. Although there have been more flare ups of symptoms than there have been "good" days thus far, I know that this is how it all works. The immune system itself is so delicate and finding that perfect balance between the innate & adaptive sides is a balancing act all its own.
So, that's what has been going on in my neck of the woods. I hope to be able to provide a more in depth review of things as everything progresses. But until then, I wish you a happy and healthy New Year!
Cheers to 2018!