i won’t ramble too much here in the beginning–I just want to get straight to this post, a continuation of my health update part 1.
In the previous post, I shared how I was diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), and I explained a little about why this was such a major discovery, and mentioned it’s impeded my ability to heal from the infections inhabiting my body. I also mentioned we know I DO still have Lyme, as well as with several hEDS comorbidities and other conditions/diagnoses related to hEDS (many we knew, some we learned in July), and we still have a long road ahead–but we now have vital knowledge with which to navigate it, and guidance on our most important next-steps to take.
Let’s get down to business, to defeat * * part two!
For some background/context:
“The crash” in January 2012+1 (BP 50/30, passing out, many classic POTS and MCAS symptoms, though we didn’t know it at the time), which led to us finally getting answers, happened after taking an extremely strong immunosuppressant medication: Actemra, which works on a deeper immune system level than the previous decade of my weekly methotrexate pills/injections, 3 months of weekly Enbrel injections, 5 years of monthly Remicade infusions, prescribed at a higher dose than the suggested max dose for my body, 8 months of Orencia infusions monthly, and various oral RXs from my rheumatologist at the time.
The Actemra seemed to help at first: for a week or two, I actually had more energy and was able to skate on an outdoor rink for nearly 2 hours. It was a couple of days after that skating session when “the crash” happened. We learned that Actemra ended up lowering my immune system so greatly, it let the formerly mostly-manageable Lyme symptoms come to the surface, as the bacteria took advantage of a lowered immune system, and they went into rapidly-escalating-attack-Becca’s-body mode (I’ve discussed that whole process in more detail elsewhere on this blog).
Since discovering I had chronic Lyme & co-infections, as I previously have said, we’ve tended to attribute new symptoms to Lyme & co-infections, because they technically all COULD be caused, or triggered, by Lyme. As of a little over a year ago, I’d already tried tried most feasible, available-to-me treatments for Lyme and coinfections, without seeing a noticeable, consistent, lasting difference. So, last year we talked with my DO about it and together came to the decision that we again needed to look elsewhere to cover our bases, just to be safe.
Covering our bases led us to the genius of a doctor I saw on July 29th (appointment also mentioned in part 1), who put me through a battery of examinations, tests, measurements, mental tasks, and more, who formally diagnosed hEDS, and who explained why the many things we were trying to approach in certain ways (presuming they were Lyme related), haven’t been affected.
Things like Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Trigeminal Neuralgia/Facial Nerve Pain, TMJD, Craniocervical Instability (CCI), and many more, are all conditions whose symptoms also align and overlap with Lyme, so even though we’ve known for several years I had the other conditions above (MCAS, POTS, TN, CCI et al.), we still were treating it with the attitude of: “if we can treat and kill Lyme and co-infections, these symptoms will calm down, because the buggers won’t be winning the battle for my health.“
Yet, even then, I (we) just couldn’t shake the feeling there was something yet uncovered, impeding my ability to respond to Lyme treatment, and we learned EDS is that “something.”
There is so much to explain when it comes to EDS, whether it’s hEDS or any of the other subtypes, as far as explaining what it is and how it affects the entire body, I can’t fit it in this post. Since this is a health update, I’m not going into extreme scientific detail, but I plan to do so in future posts on EDS. I know this post didn’t contain much of the specifics we’re addressing, but before I explain more in yet another post, I wanted to give y’all the context for “the crash” here, because it’s important to understanding the overall update.
Part 3 coming soon!
I hope you’re all enjoying life in the best ways you are able. Thanks for reading, and again, I’ll be back to “talk” to y’all soon for part 3 of this update (including treatment plans, how well everything fits together, and why we’re doing what we’re doing right now, in regards to health).