The Lyme Second Opinion...

So I got a second opinion on my potential Lyme Disease this past week. I visited a family practice that is also known for being Lyme Literate. Which is important when you think you could have Lyme Disease. I was cautiously optimistic going in, but still a little panicky under the surface (I think feeling unheard does that to a person).  And then the Nurse Practitioner walked in, and was way more cheerful than I usually am, which would normally make me suspicious but in this case it set me at ease, and I layed out the gist of my story of the past month or so, and she layed out the following for me. I'm not sure of her exact words, but here is my paraphrase:

"We treat aggressively for Lyme here. We believe you.  We are going to test and treat you, and then we are going to monitor you to see if you need more treatment, and we will keep watching you so we know you are better. And you are going to get better. Plus, you are smart, pretty, trustworthy, and a good mom & wife."

Fine, I threw that last sentence in myself. But that's what reassurance feels like. 

So here's the rundown...

I had a confirmed tick bite plus flu-like symptoms.  They were mild but they were persistent, they improved with the short run of antibiotics, and then they returned after I went off the meds.  So even though I had no bullseye rash, I still have good indications for the longer run of antibiotics.  The docs took my blood to test for all the major tick-borne illnesses, and put me on antibiotics for 30 days (Amoxicillin instead of Doxycycline because I'm nursing), as well as a yogurt regimen.  After that time they'll test me again and watch me for further/returning symptoms.  And so on for several months.  It's kind of a pain, but I am very, very fortunate that I had a definite date of the tick bite, and that even though I didn't know about things such as saving the tick and getting a single dose of meds within 2 days, I knew enough to watch myself for symptoms and to address them quickly. Plus, over the past several weeks I've heard from several people I already knew, who continue to deal with Lyme Disease. Their experiences gave me good questions to ask, so I could be more confident about the answers I got.  So thank you, people in my life who told me your stories.  You helped me immensely and I appreciate it.

The nurse practitioner said oftentimes they get people who have been sick for several years, and by that point it is a much longer road to healing, and they get into the more permanent, chronic, and/or disabling effects.  It's nasty, scary stuff, the Lyme Disease.

Therefore in the spirit of awareness and prevention, here are some sites for more information about Lyme Disease and tick-borne illness.  Remember, speed counts.  Don't adopt a laid-back approach of "wait & see," even if that is your normal style, like it is for me.  And if at all possible, get to a doc who has lots of experience dealing with Lyme and tick-borne illnesses.  There is conflicting and sometimes-controversial information out there. It can even get politicky at times, but the bottom line is this:  if you are aggressive early on, the chances of full recovery without lingering/chronic effects are excellent.

ILADS

CDC

LymeNet

My doc doesn't know it yet, but I'm adopting her.  As my regular doc; not, like, into my family or anything. That would be creepy.

But maybe we could be BFFs or something...

The Lyme Saga...

The (stupidly indecisive) bottom line is that I may or may not have Lyme Disease.  Up until recently I was rationally and reasonably leaning toward "may not," but now I'm leaning toward "may."  Or rather, I'm leaning toward "may have some sort of tick borne illness."  One thing (among many) that stinks about Lyme Disease is that it can be really hard to say for sure whether you do or don't have it, or if you have had it, whether or not you are cured.  So I'm walking around going "I might have Lyme Disease," the Cat Daddy's going "You don't have Lyme Disease!" and as far as my doctor's concerned the jury is still out.

I'm actually kind of mad about it right now, because as time goes on and I'm not really getting worse, but definitely not getting better, it's hard to know what to believe or trust.  I tried detailing a timeline for your perusal and general enjoyment, but it made me want to poke out my eyeballs, and if I wanted to poke out my own eyeballs, there's no way you'd have wanted to sit through reading it.  Here's the short version:  based on all the reading I've done on the internet (allowing for extremes on both ends of the Lyme debate and trying to weave together a healthy balance of conservative Western medicine and alternative-medicine theories as well), I seem to be a good candidate for some antibiotics, particularly as time is going on and my vague and mild, yet persistent, symptoms are not going away.  I've been to two docs, had two negative blood tests (no surprise there--even people who do have Lyme disease often come up negative on the blood tests), been declared otherwise healthy as a horse, and still don't feel well.  My new doc here did a short run of antibiotics, which seemed to help while I was on them, but after stopping them I started feeling sick again.

I really, really want to trust in my doc's assessment, but now I'm to the point where she is still saying "wait & see, it might be a virus or sinus infection" and I'm all, "No really, I'm not getting better, and this is too long to feel sick, even if I'm not lying flat on the couch all the time, because I'd really rather it not get to that point." And she is kind and professional, but firm about waiting longer. 

When it gets to this point I start to feel nervous and unheard.  It happened 10 years ago, when I was still searching for the cause of what I now know is my stubborn sacrum (SI joint dysfunction).  Several doctors in succession said "No you're fine, here's some tylenol," but I knew (KNEW) in my gut that something wasn't right, and that continuing to wait, at best, would not be helpful.  In the end I was right, and eventually I found the right doc who found the problem, and while I deal with my stubborn sacrum to this day, it's not the big mysterious problem it was before I knew what it was.

Now, I don't want to be "that patient" who runs around to different doctors until she finds one who will tell her what she wants to hear...but I have yet to be convinced that I'm being heard, so there's that tricky balance of respecting the docs, being that they do have all that education and experience and so on, and being willing to self-advocate (even if it means being seen as a pain in the tookus) when I know that something is not quite right.

So I'm thinking it's time for a second opinion.  And here's where medicine, relationships, and my nervous-issues all collide without making any sense--a lady I hardly know sent me a list of docs in the area who deal with Lyme (because I went ahead and asked for info even though I get nervous about revealing too much to new people who don't know me well), and one of the docs on there takes my insurance (which many, many "Lyme Literate" docs don't), and can get me in for an appointment. Tomorrow. 

And while a big part of me is fairly nervous about hearing the same thing I've been getting for the past several weeks...a small but fierce part of me is very hopeful indeed.  I figure if I'm seeing a doc with lots of experience with Lyme, just maybe I'll be able to hear them out and trust what they tell me, even if it isn't what I'm hoping to hear.  So I cried tiny tears of relief after I made the appointment.  I took control where I could, and I have hope that I will be heard. 

And now you are, for all intents & purposes, up to speed on my own personal Lyme saga.  So if I joke about it from here on out, you'll know where on earth I got that idea. 

And don't give me any guff!  After all, I might have Lyme Disease...

The Upside...

The upside to all this upheaval is finding little gifts in the newness.  I wonder if because I'm in everything-is-new mode, that I more naturally try new things.  Either that, or I'm hitting that point where I'm delving into the things I'd put off "until the move."  In the past two weeks I've tried no fewer than three new recipes (WAY more than I normally brave), done a bunch of research on doctors, churches, and child care (out of necessity), and even snuck in some new music via a friend.

You should click here and give it a listen.  The whole song is nice, but see if you like the instrumental in the final minute as much as I did...