Thursday, October 20, 2011

Where I am.

I've written a little about my Lyme disease, with which I was diagnosed in August, treated with a course of antibiotics for 3 weeks, and which flared up about 3 weeks ago, shortly after my treatment ended.

And I've also written about how I am not letting the Lyme stop me, how I am running on and not accepting this stupid disease.

What I have not written about is the roller coaster ride that has been my medical treatment. It has been one huge pain in the butt, extremely frustrating and disappointing, and proof that you're really on your own when it comes to your health.

In a nutshell, after my symptoms came back in September, I was retested for Lyme and told I don't have it. In fact, my doctor sent my two Lyme tests to the county epidemiologist who reported back that not only did I not have Lyme, I never had Lyme.

Really? So, why was I told I had a positive test at the time -- by both my doctor AND the very same epidemiologist? And why was I given 3 weeks of doxycycline (an antibiotic that made me feel totally crappy)?

Well, according to the epidemiologist, she never told me I had Lyme. That's funny to me, considering how she called me, told me she received a copy of my positive Lyme test, and then asked me a series of questions about my symptoms, where I live, if I was bitten by a tick, how long I think I'd had Lyme, whether or not I'd had a bulls-eye rash, etc., etc. But, apparently, she never did this.

Interesting, huh?

In the meantime, since August, I've been tested for tons of different things -- rheumatoid arthritis, vitamin B12 deficiency, hyperthyroidism, hypothyroidism, etc., etc. I've had an EKG, echocardiogram, x-rays, lots of bloodwork.

They can't find anything wrong.

And yet, my symptoms -- all of which correspond to Lyme disease -- persist.

Yup, frustrating. And that's where I am. In the middle of frustration but able to see a little flicker of light at the end of the tunnel: Next week I have an appointment to see a doctor specializes in the treatment of people who have Lyme and similar problems. I really hope I get some answers.

I honestly would rather not have Lyme. But if I do, I'd like to be properly treated. And if I truly don't have it, I'd like to know what is wrong and what can be done to fix it. That's all.

So, it's been on my mind, that's for sure. I haven't been able to post as much as usual so I have tons of review and giveaways that I'm behind on. And I haven't been able to get around to other blogs as much as I'd like to. Just the way things are right now.

OK, that's that. Thanks for stopping by and for continuing to read my little blog! I'll be back to my regular self in no time. I'm sure of it!

~ Felice

20 comments:

Karen G said...

This is the first time for me to comment but I am rooting for you! Keep on keeping on and keep inspiring!

mom27g said...

ugh, I hope they figure it out soon for you!! Stay strong, girl!

Melissa said...

Hope you get some answers and a solution soon! I'm thinking good thoughts for you!

Tami mommy of nine said...

All I can say is I feel your pain. Not literally myself but in dealing w/my kids issues from Lyme. Our doctor says that you have to go by the symptoms NOT the tests. She thinks the tests are highly flawed! You are indeed your own advocate in this. Fight! I know you indeed are a fighter!

Darlene said...

Sending healthy thoughts your way. At least, you are running well...

Falon said...

Sounds like that rant was earned. Hope some answers and relief are on the way.

Lisa said...

Wow, your story is exactly the same as my husband's except for the positive result. He was never found positive for lyme, but seemed to have most of the symptoms. Still struggles with a non-diagnosis today. I feel your frustration thru what I've observed w/ my husband.

I hope you get some answers and are feeling better soon.

J said...

Geez that totally stinks. I hope they find out what is causing all this and give you some answers!

Fair Weather Runner said...

what a debacle, bless your heart. i hope they figure out what is going on VERY soon. and i hope you are feeling better.

run4may said...

wow i'm so sorry to hear about your ordeal. hope it gets resolved soon. stay positive.

ajh said...

How completely frustrating. Good luck with this.

Amanda - RunToTheFinish said...

horribly frustrating to not be getting answers!! I was very sick this summer and after all kinds of tests nothing was ever decided. I was annoyed and upset and really just wanting to feel better!

I truly hope something starts to turn around for you and they figure it out

Casey said...

That is seriously frustrating. Yeah, you don't want to have Lyme, but if you do and they can treat it, that's one thing. Hopefully, they will get their stories straight and get you back on track!

Carla @ I Run, You Run said...

Holy crap, the same thing happened to my friend about 2 years ago. Earlier this year they FINALLY diagnosed her. This is what she wrote on her facebook (she had MANY different diagnosis in those 2 years, I can put you in touch with her if you want to find out everything she got tested for, including sleep tests and a bunch of other fun -- not! -- stuff):

"After nearly 2 years of every kind of poking and prodding imaginable, I have a diagnosis....and it's NOT Lyme disease! Nor is it Lupus. Dr. House would be sad. I'm actually hypoglycemic, which is very treatable with careful attention to my diet and frequent meals."

Tina @GottaRunNow said...

So sorry to hear this. Hoping the next dr appt gives you some answers and that you feel better soon.

onelittletrigirl said...

Horribly frustrating! For the record, my dad went through the same thing. In the end, it really was Lyme. They said it was, then it wasn't and after 5 months (!!!) it was actually Lyme. Keep seeing doctors...get 2nd and 3rd opinions. You are your best advocate! Good luck!

Melissa said...

Hang in there, I understand your frustration. What you thought may be answers, not really answers, and no real help.

I am going through something similar. My mood, my spirits, and my running are suffering. I've tested positive for 1 thing they won't treat (which I think is the real issue), and now being tested for 101 other things.

I hope we both get answers and relief soon. :-)

trailrunningchick said...

Medical Limbo is always so frustrating. I hope you get an answer and a treatment soon.

lindsay said...

Ugh. Doctors. Ive seen so many over the past 3 years who've done just about nothing to help/fix me. So frustrating!! Hope you find some answers and a treatment plan soon!

Anonymous said...

Hello - I am also an avid runner and have completed several marathons in the past four years. Recently, I have been sidetracked due to a stroy similar to your lyme disease, mis/diagnosis. I am still undergoing further tests, this time for rheumatoid. My knee has been inflamed for more than 3 months now and I have not been able to run since the cyst started. I am on my first week of antibiotics just in case it is lyme. I'd like to know more about how yours was resolved (if it was). I would greatly appreciate it if you or anyone on this thread who has similar experience send me an e-mail when you have time: tdemesa@prologis.com. Thanks so much.

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