Friday, March 30, 2012


So, it's been awhile since I last wrote. We've been busy. Switching Sweetie to a new (Lyme literate) doctor. Getting new blood work tested. Waiting for results. Keeping our optimism high but our outlook realistic.

And now, we have our definitive answer.

Sweetie does indeed have late stage (chronic) Lyme disease.

The blood test (the Western Blot Lyme test) Sweetie recently had was different than her first Lyme test last June. The Western Blot test, in a nut shell and as I understand it, shows both the history of the disease and the current state of things. So, whereas Sweetie's former doctor's told me that she will always test positive for Lyme now that she's had it because the antibodies are in her system, Sweetie's new doctor said that with the Western Blot Method, it is possible to get a clearer look at things and properly determine if she merely has the antibodies in her system, or the Lyme is still actually active.

Let me tell ya, from the look of her results and as the doctor explained it to me, Sweetie's current state of Lyme is "lit up like a Christmas tree." There was more than enough evidential support to say that her Lyme is active in the late stage phase.

I hate to say I told you so (and in this case I really mean that), but...

And so... now we have Sweetie on high-test antibiotics for "at least" two months. Once the course of antibiotics is through, then she will start on a really long term course of herbal supplements. We started her on the antibiotics last night. Now, we're waiting for the Herxing to begin.

(Little did we know, when Sweetie's first full day on antibiotics last year caused her to feel just miserably flu-like, that that was actually a sign then that her Lyme was already in the late stage phase. What amazing things you learn when you speak with doctors who are knowledgeable in the areas you need them to be!)

Bottom line... that tick we found on her at the end of May last year? That wasn't "the" tick that gave her Lyme. No, the culprit tick was an earlier one we missed altogether. Thus explaining why her 6 weeks on antibiotics didn't kill the Lyme off. It was already too late. She may have had a brief respite from the symptoms, but she could not get rid of the disease.

Nor, of course, can she kill the Lyme off now. It's too late. Her months and months of treatment now are all about managing her health. All about warding off the symptoms of Lyme from cropping into her life with any regularity. Her regular vomiting she's experienced over the last several months? Definitely a symptom of Lyme. But this disease is migratory in nature, so it's vomiting every 4-6 weeks or so now, but that could change to bad headaches every once in awhile, or joint pain, or fatigue, or whatever. It is these symptoms that we are trying to keep away for as long as possible.

I wonder what life will be like once her long course of medications is through. Perhaps enough of the Lyme will have been rid from her system by then so that there is little for the bad bacteria to grow on when it wants to regenerate itself again (every month or so - Lyme is cyclical, thus Sweetie's frequent vomiting so far and her monthly Herxing we've been warned will happen while she's on the antibiotics.) I don't know. I'm still learning. Honestly, I don't know why long term medication won't kill it off. Maybe it will?? But then again, I do know Lyme is very tricky, able to put up a protective "shell" around its bacteria that is resistant to antibiotics. So... as I asked her doctor, are we simply managing at this point, or do we still have a shot at killing it off? "Managing" was her quick, assured answer. We are managing.

So. We treat. We wait. We change her diet to a combo macrobiotics/whole foods/GAPS to keep her body as healthy as possible as it deals with all this. We hope for the best and we wait for some occasional days when she may feel her worst.

As I said, last night I gave her her first dose of antibiotics. Medication I know, in short order, will make her feel temporarily miserable. As a mother, it wasn't my most favorite moment.

But, as a mother, I will do anything, as will Hubby, to help Sweetie live the best life she can possibly live while navigating this scary and rocky new road we now travel together.


trmills said...

So glad to know more...sad that you're walking through this difficult thing. We all send love to all of you!

HennHouse said...

I'm so sad to hear that she (and you) are having to deal with this, but I'll admit that I'm relieved that you have some answers and a treatment plan.

We'll be praying.