so we didn’t have the best consultation with H’s lyme specialist this week in NY (by phone) - seems she needs tens of thousands of dollars worth of treatment on top of what she is already doing in the next 6 months plus, he can’t continue treating her without a face to face consultation (he’s been treating her by phone for 3 years), so she will have to travel to NY & back from Australia for a 1 hour consult (I have been expecting this for a while, so it isn’t totally unexpected, but the big bucks treatment in Germany certainly was a shock).
Nikki has been appointed as the patient representative to the Chief Medical Officer of Australia’s Clinical Advisory Committee on Lyme Disease (CMOCACLD) - the name is a bit of a mouthful, but is a HUGE leap forward for sufferers of Lyme Disease around Australia - finally a transparent review of the situation of Lyme Disease in Australia. You can see the terms of reference here - http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
J is back on crutches again. She injured her foot a year ago, and it looks like the nerve damage is permanent :-(
Sadly, the experiment of going off the antibitoics didn’t work :-( H has had to go back onto the doxy, and when that didn’t stop the slide backwards we added in Bicillin injections. We didn’t want to wait until she was paralysed like the last time we stopped the antibiotics, but probably left it a bit too long - now she has to recover and get back to where she was, as well as starting back after the uni holidays. Oh well, the ups and downs of living with lyme continue on again.
HURRAY!!!!! H is going off antibiotics!!! After 4 years on antibiotics, finally we have a break through! She will begin the transition at Easter - so here’s hoping it goes smoothly (last time we had to stop the antibiotics she ended up paralysed). She will continue with the Byron White Formulas to mop up the rest of the bugs, but we are hoping that this is all she will need. We aren’t sure what brought this change about, but it coincides with her having to stop her blood pressure meds (for really uber low blood pressure) and had to start taking salt tablets instead (salt is an alternative treatment for lyme, which it appears has worked well for Hannah). We will let you know how the transition off abx goes :-)
J, H & Nikki made this cake for MM’s 21st birthday! It was actually a lot easier than we thought it would be - we followed the instructions from Zumbo’s book, and Not Quite Nigella http://www.notquitenigella.com/2010/09/21/a-step-by-step-guide-on-how-to-make-a-wedding-sized-croquembouche-with-patisse/
This is one of my favourite photo’s - I was trying to get a photo like this for weeks before Christmas, but gave up, because we were never all home during daylight hours. In the end, we got the photo on our Christmas Day (which was a few days before we all headed off to our respective extended families to do Christmas with them). This photo reminds me of how big your heart can expand to love all the people around you - and that too much food and street cricket are essential for any Christmas celebration :-) It is also a great reminder of just how far we have come in our journey with Lyme Disease - we could never have done this even a few years before, with either H or myself bed bound, hooked up to an IV, unable to eat solid food, and stuck in our wheelchairs - this photo is a celebration of healing, life moving on to better things and love :-)
It takes us an incredibly long time to make up our drops for the week, but it just got a whole heap easier. We bought measuring cylinders, a pipette & pipette loader - it has cut down our drop preparation time for the four of us to 25% of the time it took before (& we get to play at looking like mad scientists :-)
Our lovely friend Ally Durr has just completed the 680km Alpine Wilderness Track, most of it solo (and she is only 16 - what an inspiration!!). She and her family decided to do this to raise awareness for Lyme Disease in Australia, because they had seen us struggle for many years (and get better). They did an amazing job - overcoming lost track markers, overgrown tracks, lightning storms (whilst on an exposed ridge), catastrophic bush fire warnings, and the logistics of dropping off food and water for the 680km trek. Well done to all the Durr family, but especially to Tracey, Jacinta & Greg for their untiring logistical support for Ally, Jack & Dean who walked part of the track with Ally when it wasn’t safe to do it on her own. A HUGE thank you on behalf of all the Lyme Disease Community in Australia - thank you for walking the track on behalf of all of those who are undergoing their own fight with Lyme Disease & so aren’t able to join you on such an amazing adventure - we truly appreciate all that you have done.
Our lovely friend Ally Durr has been walking 650km through wilderness from near the bottom of victoria to near Canberra along the Australian Alipine Track to raise awareness for Lyme Disease - she and her family are an inspiring group of people who really get stuck into something when they turn their minds to it. You can follow Ally’s walk here www.allydurr.com (click on the blog). Help her spread the word about Lyme Disease and raise much needed funds for research.