NOTE: This is my first blog entry. My intent is to provide a status of where I am today, and then "flashback" to the beginning of this life-impacting medical tsunami, so that you can measure the progress of my healing. I'm a writer - I kept ample notes, in emails and texts and chronicled my lab results and medical procedures in Excel tables and documents. Some of this will be funny, and some heart-rending. Please note that treatment is not one size fits all. The fact that I'm better today is a testament to many smart (and not-so-smart) doctors and to happy accidents and the following of instinct along the way. I took control of my medical treatment out of necessity -- so can you.
I am Lyme Girl - watch me heal!
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April 12, 2014 was a good day. Not a "better" day or an "ok" day or an "I'm coping and smiling and soldiering through" kind of a day. It was, quite simply, a good day.
A year and a half ago, it would have been a "normal day." Because I used to be a type A personality, driven to excel at a 24/7 demanding day job, while also making progress on my writing career.
But a lot has happened in the interim, so "good" day is what I labeled it, uncertain if it was a fluke or the start of some sort of remission (knock on wood, throw salt over my shoulder, etc.) from the lyme/Hashimoto's/adrenal fatigue combo pack that knocked me on my keister and took my life for a stomach-clenching rollercoaster ride through hell.
I had hesitated to accept when a friend asked me to assist at the Hollywood Show, wrangling the fans of her celebrity boss. Would I be able to make it through the day with all that standing? What about fitting in my required "feeding" and "supplement" times? If you have lyme, you know what I mean. The schedule is regimented. And the looks you get from others ranges from curiosity to pity. The very last thing I wanted was to trigger some sort of weird up "flare" or herx reaction in a public place. But I had begged off things in the past, and I'd been feeling "better." So I accepted the invitation.
And it was good. It was better than good. I had stamina, without a hint of fatigue. My brain was clear. My smile was sincere. I felt - dare I say it - normal? It was as though I had somehow, mysteriously turned a corner.
Multiple times that day, I told my friend that I was "good." And she could see it.
But first you feel it, and then you start to question it or rationalize why. I mentally went over any changes I had made in diet and supplements to try to find a reason. Because knowledge is power with lyme. Always. And we like to think that we can influence at least something in this process to bring us back to health, if only in increments.
In February, we discovered that my liver levels (ALT and AST) had risen dramatically (to accompany the sudden increase in my ferritin and iron (the subject of future blog posting). The thought process was that the antibiotics were perhaps playing havoc with my detox system (liver) and my iron was rising due to my body trying to fight off die-off. And maybe all of that had been impacted when my mercury amalgams were removed - also in February.
So I stopped supplementing iron and ceased taking the latest of my antibiotic cocktails (Rifampin - Feb. 20 and Tindamax - March 28). And during my latest appointment (March 28), the doctor and I also decided to reduce the number of supplements I was taking.
But that was March 28. And my April 11th blood draw still showed high liver levels and high iron, although my ferritin was starting to come back down (nowhere near normal).
So I can't pinpoint the factor that contributed to my feeling clinically lousy on April 11th and then suddenly physically "good"on April 12th. A year and a half ago, that lack of control over my life would have made me crazy. Now, not so much.
Because since April 12th, I have continued to feel "good." No internal twitching, no brain fog, none of the numerous, mysterious symptoms I'll outline for you in other blog entries. I'm sleeping through the night again - that's a big one! This is, literally, the best I've felt in a year and half. Almost back to my "normal" self -- pre- the diagnoses of hashimoto's and lyme and adrenal fatigue and the mountains of antibiotics and supplements I've ingested in the interim.
I'm accepting that "good" and embracing it fully. I do not need to know why. I just know that I am better. The fear factor of saying that out loud and then having it all go to hell has dissipated.
How much better remains to be seen. My next doctor's appointment is May 9th, and there's been a CT Scan of my abdomen (last week). Because we still don't understand the why's and wherefore's of the high ALT and AST, there's another set of blood tests on April 28.
And I have two remaining symptoms that concern me - two white spots on my wrist (vitiligo) that appear to be spreading, and I'm shedding hair again (that hasn't happened since November 2013).
But I'm putting gratitude out there into the Universe for "healing." And I'm getting more comfortable with feeling normal. Because it's been eleven days and counting ... And that is so very, very good!
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Next blog post: "COMMENCEMENT" (or how it started)- peri-menopause, Armour thyroid, Lyme Girl is bitten by that d*mn feral cat
I was bitten by a feral cat in Nov. 2012. Unlike Peter Parker, I didn't turn into Cat Woman. But it was life-changing. My super power is healing myself from Lyme/co-infections. And sharing what I've learned.
