One more sleep until it’s time to head back home to Canada from sunny California! It’s been a positive and productive week here; despite the high expense to do this trip (eeeep high lab test costs!), I feel that it’s been highly worth it. I’m not content with chalking up my relapse in symptoms to depression and anxiety alone, and my gut tells me I still haven’t treated the root of my medical issues.
I plan on writing more informational posts once I return home about how my medical appointments at the Open Medicine Institute have gone, but for now I’m leaving this post as more of a general check-in on how things have been.
Despite having the one appointment with Dr. Kaufman on Tuesday, by tomorrow I’ll have gone into the clinic everyday this week. Monday, Wednesday and Friday have been the days for my Galaxy Diagnostics Triple Draw to test for Bartonella, and Thursday (today) I went in to do the SIBO (small intestinal bacterial overgrowth) hydrogen breath test.
The SIBO test turned out positive as it had last year, which means I’ll be doing another round of xifaxan. As far as everything else goes, it’s a bit of a waiting game from here. Dr. K and I still don’t have a good idea of what’s really going on with me, but given that I had some weakly positive tickborne disease tests last year, that’s where we focused a lot of the new testing on me this year. Another test we decided to do is the Cunningham Panel which is used in the diagnosis of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) – seemingly a stretch seeing as I’m a young adult now, but apparently they’re starting to find some adults with the disorder who have gone undiagnosed since childhood. While it hurt to see the bill for all this, I don’t feel like anything is really off the table at this point seeing as my symptoms don’t cleanly fit any conventional diagnoses and there’s a lot of unknowns still when it comes to complex chronic illness.
It’ll be really interesting to see what comes of all the tests. Stay tuned for those updates as well as the medical backstory that led to this point!