HEALTH UPDATE: It’s not ALL Lyme
You heard it correctly: it’s not all Lyme...so what (else) *IS* it? Buckle in, we’re gearing up for a ride.
I’ve wanted to share this health update with you since we learned the answers in late July, but it’s overwhelming and daunting to even think of trying to summarize it all in one post.
SPLITTING THIS POST INTO MULTIPLE PARTS FOR LENGTH
Let’s customarily get this out of the way:
I know I’ve not kept up with this blog in 2019 like I hoped I would–or at all. It breaks this writer’s heart to not be able to communicate via written word on a regular basis. While YouTube helps in many ways (I absolutely love vlogging–sometimes filming and talking is easier than typing), it still involves using my computer regularly, which is currently not possible, so vlogging right now is sporadic.
It’s finally time to face my fear and attempt an overall update of where I am in my healing journey, even though it’s a daunting task. So much has happened since my last post on this blog, from November 21, 2018, the eve of my thirtieth birthday.
We’ve gotten answers to many of the questions on our list of yet-unresolved medical issues needing to be addressed, Lyme and otherwise, and we’ve been praying and have been given guidance and direction on the next steps to take for further positive action.
Long story short: It’s not ALL Lyme.
I’m sure many of you who read this from a Lyme–or other chronically ill–patient’s perspective will understand what I’m about to say, because it can happen with any chronic illness:
When we have one main diagnosis that can, and often does, mimic symptoms of 300+ other conditions, issues, diagnoses, it can be easy to blame any subsequent diagnoses, conditions, and new or random symptom flares, on the OG diagnosis, be it late stage Lyme neuroborreliosis, or any other chronic illness. Even if it’s something else entirely.
I want to be clear on this:
I still have, and am fighting chronic Lyme disease (late stage Lyme neuroborreliosis), daily. I still have positive Lyme tests and other specific immune system/marker test results which indicate the continued existence of the Lyme bacteria, and co-infections, in my body.
It’s still a major issue and we continue to treat it to the best of our ability, while also giving my body the holistic support it needs.
We just also know more about why my body hasn’t responded to treatments for Lyme & Co, why I haven’t been able to reach a functional state, despite trying so many treatment avenues, and why I struggle to even just maintain the status quo after a decline (Lyme can go into remission; it can’t completely leave your system, once in the chronic, late stage Lyme neuroborreliosis stage...at least not YET–I always hold out hope for a cure!)..
So what ARE the other answers we’ve gotten?
First and foremost
I saw a chronic pain management specialist who also specializes in Ehlers-Danlos Syndrome (a genetic connective tissue disorder that weakens the connective tissues of your body). If you’re not familiar with EDS, that’s okay, although I have a feeling some of you understand it firsthand. To explain the nature of EDS a little more cohesively, here’s an understandable explanation from the Ehlers-Danlos Society:
“Connective tissue is what the body uses to provide strength and elasticity; normal connective tissue holds strong proteins that allow tissue to be stretched but not beyond its limit, and then safely return that tissue to normal. Connective tissue is found throughout the body, and Ehlers-Danlos syndromes are structural problems. An analogy: If one builds a house with faulty materials, say half the necessary wood or with soft aluminum nails, it is certain there will be problems.”
I wanted to use their direct quote here, because it summarizes its point well, and explains the very foundation/most basic level of how EDS affects the body, and why. I also love the analogy.
When seeing the EDS and chronic pain specialist on July 29th of this year, I was definitively diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS, formerly called EDS-type III), during my 5-hour appointment with this wonderful practitioner.
Throughout the appointment, we learned and uncovered more about how hEDS has affected my entire life, and realized we always wrote it off as “growing pains,” or, when diagnosed in 2005, “Juvenile ‘Idiopathic’ (we don’t know why you have it, but you have it) Arthritis,” frequently saying things to the effect of: “that’s just something my body does,” and more. Physical things that have just been “off” my whole life finally make sense.
There have always been a few symptoms of mine that should respond to particular types of treatment, in positive ways, but I’ve yet to see lasting success, as many have, with those same treatments for Lyme & Co.
And now, all the symptoms and health oddities throughout my life that haven’t been affected by, or responded to, any kind of treatment–it all just finally ‘clicked’ at that July 29th appointment with the EDS/chronic pain specialist. We had an answer (many answers, but those will be in the next posts), and we have an extremely detailed action plan.
This has already been quite a long post, so while I do have more to share in the ways of a health update, hopefully splitting this update into a few posts will make it easier to write, read, understand, and follow.
Here, though, I wanted to at least lay out the basic framework behind, ‘it’s not ALL Lyme,’ what it means; and at least share what one major part of the rest of “it all” is.
More details on my hEDS diagnosis, why Lyme treatments have failed (thus far), and the other issues we’ve unearthed (and about which we’ve garnered more knowledge over the past several months), coming soon!
God bless each and every one of you,