Hello! And welcome to Our SubLyme Life! Yes, you read that misspelling correctly. My husband and I will be using this space to write about life as we know it, as we guide our currently 9 year old daughter down a road that can be both scary and rocky for all of us - her recent diagnosis of Late Stage (chronic) Lyme Disease.
I've already written quite a bit of background on her situation over at my other blog, but Hubby and I both thought that, now with the official diagnosis, it would be a good idea to separate two main blog ideas into two separate blogs. And, there you go - Our SubLyme Life was created!
You can read the history of her symptoms and diagnosis (and more!) over the last 10 months or so here, here, here, here, here, here, and (finally!) here. Or, if you just don't feel like clicking those links, here's the basic wrap up...
Last June Sweetie displayed flu-like systems, followed by a couple weeks of ongoing headaches. We took her to the doctor, where (as one of my friends had suggested as well), the doctor thought testing for Lyme would be a good idea. Hmmm... we did find a tick on her at the end of May, 2011 that came off easily, so we thought it hadn't been on her long and therefore wasn't a concern. But, sure. Go ahead and do the test. Results showed, yep, Lyme. Doc prescribed 3 weeks of antibiotics, which I pushed to get lengthened to 6 weeks since I had personal knowledge of plenty of people who didn't get rid of their Lyme with only the minimum weeks of meds.
All went well, we changed her diet and incorporated probiotics to help maintain her gut flora while on extended antibiotics. After a 1st day on meds making her feel just miserable with flu-like symptoms, from then on out she felt much better and life was fine.
Cut to November, 2011 when I got a call from the school nurse to pick Sweetie up from school, as she had just thrown up. Then, between November, 2011 and February, 2012, Sweetie vomited 3 more times - all without any other symptoms, and all resulting in her feeling much better within a couple hours of her last instance of vomiting. Strange, no? I thought so. She wasn't "sick." She was just vomiting. Maybe 1 or 2 times, maybe several times in several hours. But all with her feeling back to herself shortly thereafter.
I took her to the doctor 2 or 3 times to figure out why this was happening. I felt certain it was at least related to the Lyme, if not directly the fact that the Lyme was still active. Her doctors took some tests, but assured me that, no, it's not Lyme. She was treated for that, they said. But we can't test for it again, they said, because once you have Lyme once, all future tests will show you still have it because of the antibodies in your system... even though you don't still have it. They said.
Hmmph... I switched her to a Lyme literate doctor. This was within the last month or so ago. This doctor also ordered more blood work, including testing for various food allergies, Sweetie's vitamin and mineral levels, her blood count... and a Western Blot Lyme test. A test, the doctor told me, that basically shows both the history of the disease and what's currently going on with it. Not a guarantee, but definitely our best bet test to see if the Lyme was still active in her system.
Blood work done and back. Everything is A-okay in terms of the allergy, blood count and vitamin & mineral results. But the Lyme results? Not so much. In the section of the test that displays the current state of things, a person only needs to have up to 5 items (sorry, I don't know the scientific exactness of how the test breaks down) to confirm active Lyme. Sweetie had about 7 or 8 items present.
She's got it, but good.
And that original bad first day of being on the antibiotics last summer? That was Herxing. A sign, we now know thanks to Sweetie's new doc, that the Lyme was late stage even back then. That tick we found on her last May was not "the" tick. An earlier one we never even saw was the culprit. Ah. So that's why the extended course of antibiotics didn't kill it. It was too late.
So now, we've started Sweetie back on antibiotics - a stronger antibiotic than last time, and this course lasting for at least 2 months. After that, she'll be on an even longer term course of herbal supplements.
We started her on her meds this past Thursday night. We are still waiting for the Herxing to begin. Sweetie thought she felt like she was going to be sick at school yesterday morning, so I picked her up. But then nothing happened. I could have taken her back to school, but I think she and I both were feeling a bit too cautious. I wanted her home in case things turned south. As I said, we're still waiting. Maybe it won't happen at all? Maybe it will take a few days? We're not sure. We're just watching and waiting.
So! So much for my brief wrap up of what's been going on for us. But now you know. And now we can all move forward.
Hubby and I will both be contributing to this blog as we live Our SubLyme Life. Maybe, over time and as Sweetie gets older, you may even hear directly from her. We'll be sharing bits of our lives, Sweetie's treatment progression, and some research and other links we feel everyone should be aware of when dealing with ticks and Lyme Disease.
Thanks for visiting and we welcome you back anytime. Join us on our journey as we travel this road together!
