Monday, April 16, 2012

Confirmed positive Lyme disease culture test results!

For the "moral of the story" of this post, feel free to skip to the end :)

I went to see my doctor (MD, endocrinologist--ie hormone doctor) last week and got the results of my Lyme disease culture test from Advanced Laboratory Services. To my complete and utter surprise, I came up positive for Lyme. This means they were able to grow the actual bacteria from the blood sample I gave them. I was in all kinds of shock, so I double-checked with the doc about it's validity. He confirmed that because the test is a culture (growing bacteria) there is 0% chance of getting a wrong result. You either grow it or you don't. Interesting.

The most interesting/shocking part for me is that, as I've mentioned, my CFS started 4 years ago (April 1st! too bad it wasn't an April fool's joke!)  with a clear case of mononucleosis. I shot my system to hell after I traveled, worked, applied to grad school without letting myself get better from it. His answer when I asked him how Lyme fits into all this: I could have gotten it at any point in my life, not showed symptoms (ie my body was managing it) and then a triggering event happens (for me, mono, for others stressful life events, other illnesses, etc) and the Lyme reactivates (?) or flairs up and makes it harder for your body to get back to normal. Grrrrreat!

So, the treatment for this is either oral antibiotics or IV-antibiotics. The doc said since I'm not in as bad of (relative) shape (that is, I'm not bed-ridden or house-bound to the point where I can't work part-time), he's starting me off on pills, 500mg/day of azithromycin (aka zithromax, or z-pack). No IV unless the oral ones don't work. Mind you, this is an antibiotic the normal person takes for 3 days. I will be taking it for 6 weeks until my next appointment where he will check in on me and see how I'm feeling. After that, he may switch antibiotics, pulse the treatment, or a number of other things depending on how I'm responding. He said response to treatment (based on his other patients, and IF there was a response) has ranged from 80% better in 6 weeks time to being on IV treatment for months with slow, minimal progress. It ranges from person to person and depends on symptom severity (and I might not respond too..,). I've taken 3 doses (3 days) now...we'll see how things go!

Some literature from the doctor's website:
Description of Illness
Handouts

Anyway, moral of the story:

  • This new Lyme test is 100% legit solely based on the type of test it is (compared to other tests that have a 30-40% error rate.
  • You can have Lyme all your life without any symptoms apparently
  • If you have Lyme and have a triggering event in your life (other serious infection, surgery, acute stress on mind or body, etc) the Lyme will flair and make it hard to feel better on your own
  • Lyme is treated by oral or IV antibiotics depending on how bad off you are.
  • The treatment is long, indefinite, and it's unclear if there will be benefit.
  • But, there is a chance for improvement. Works for me!
  • I just started taking the oral antibiotics...we'll see what happens!
I'm trying to be neutral and not get too excited because who knows what will happen...I'll update of course!

2 comments:

upnorth said...

Hi! That's good news about it being treatable. I hope its not too long a journey as I know some are on these meds for years and years and still sick. But it makes me wonder about the culture test? Where/who did it? Because I was working in the woods for years before I got sick with Mono....which triggered the M.E....and I know I've been checked for Lyme at least 6 times now.....one time I had a positive screen, but then the western blot was negative....

Anonymous said...

Update? How are you feeling? did oral antibiotics work? Testing with Advanced tomorrow