I have disease that really sucks — or at least that’s how I got it…

landscape

I’m typically so busy with my “little world” that I get distracted & forget about myself.  I can’t help but wonder how long I’ve been doing it for.  On July 18th I suddenly felt numbness in my left arm which led me to MGH — they said I had a pinched nerve & that I should go for massages.  A doctors prescription for massages?  Short of prescription for “more cowbell” I can’t think of anything cooler — sign me up!

I was a good patient & forced myself into following “doctors orders” & had weekly massages.  Yet the numbness got worse & worse.  I saw a chiropractor, did yoga, drank green smoothies, & finally saw my neurologist.  The person I typically see in the office is a physicians assistant because I really think the best appointments I’ve had have been with physicians assistants & nurse practitioners. She recently left the practice, so I saw “The Head DIC” —  who proved to be just that.  He told me that I didn’t have a pinched nerve, that he’d run tests but that there wasn’t anything wrong with me & that this was not a neurological problem.  He ordered tests on just about everything — essentially to placate me.  To add insult to injury, the claim for the screening for multiple sclerosis he sent me for was denied by my insurance company…

Most people would tell you that I’d run circles around the Energizer bunny, yet I was operating at 25% capacity for several months.  I couldn’t decide what annoyed me more: being in constant pain or “The Head DIC” insisting that it was all in my head. I told my chiropractor “Dr Nick” what had happened & asked him for a referral — he sent me to “Dr Chris.”  Short story long, long story short: I have lyme disease.

Let me tell you a little about lyme: most of us think of lyme as a disease you get if you’re outside frequently or spend time with animals.  But the truth is, that the people who are frequently outside or work with animals are the lucky ones.  They’re all too aware of the disease: they know they’re at risk, they know what the tics look like, & they know that they need to begin treatment immediately.  Your average joe asks questions like “Did you have a tick?”  “Were you outside?”  “Did you have the rash in the shape of a bullseye?” — which is what I would have asked before now.  The reality is: the ticks are teeny tiny & often go unseen, you can get a bite on the beach, & you don’t always get a bullseye rash.  I talked to “Dr. Chris” who told me within moments that “there’s definitely something wrong with you” (something you, my 3 loyal blog readers are bound to find out first hand…) & talked to me about possible causes.  He immediately suspected lyme — we live in New England where it’s rampant & he had seen more mis-diagnosed cases than he could count.  He even told me that he had a patient that had a Hodgkins diagnosis, but it was actually Lyme.  I told him “I was already tested” but he told me that the typical panel is terribly ineffective (something like 30-40%) & that I needed the full panel.  Well, they ran the full panel & it came back positive & I was thrilled!  Lyme disease: antibiotics & you’re fine.  SOOOOO NOT TRUE!

For the last 3 weeks I’ve been taking 1000mg of Clarithromycin & 400mg of Hydroxychoroquine.  Sounds sexy huh?  Well, I’m getting worse.  My doctor warned me that this could happen.  He told me that we still don’t know enough about the disease & that the medical community is in constant debate on the subject.  He told me that some people NEVER recover & that we will likely try several combinations of antibiotics, that some people found relief through daily IV antibiotics, but that it was expensive & NOT covered by insurance.  In typical Stacy fashion I just had to focus on the positive, suck it up & take the pills.

It’s been 3 weeks, I have an appointment today at 11.  I’m hoping to get in with the “lyme guy” at MGH if “Dr. Chris” will support it, pending my blood work.

In the meantime, I found a really cool website/app through a TED Talk that I LOVE: SuperBetter, it makes getting healthy a game.   Even if you aren’t the “gaming type” (we’ll scold you for that another day) you should watch Jane McGonigal: The game that can give you 10 extra years of life — it will change the way you look at things, 20 minutes well spent.

Rambling about my problems for no reason isn’t my style — I’m hoping that this post will help someone else.  Maybe I’ve dispelled some lyme myths.  What I really want want is for us all to take control of our healthcare.  Don’t be a “good girl” & do whatever your doctor says — be informed & fight for your every minute of your life, time is finite 🙂

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