We are fast coming up on Lyme Disease Awareness Month, I thought this would be a good time to write, catch up a bit on my blog and do a public service at the same time.
As some of you may know, our oldest daughter has been fighting Lyme Disease for several years now. Over the winter this year, after being on and off antibiotics and herbal protocols since 2011, she got worse, a lot worse.
This is a family photo from January that I didn't share because I didn't want to deal with all the questions if I posted it. I had no answers to give. Her legs and back were in pain and she couldn't walk well or comfortably. She was almost happy about it, normally Lyme is an invisible disease, she looks wonderful, therefore how can she possibly be so ill? It was almost as if, being in a wheelchair gave her some kind of validation. It broke my heart.
And we at last, bit the (financial) bullet and took her to NYC to see one of the preeminent Lyme doctors on this coast. April 4th we went to NYC to the Lyme Medical Resource Center to see our new hero, Dr. Bernard Raxlen. To our shock, he diagnosed her with not only Lyme, but several co-infections and a myriad of other issues all stemming from being bitten by a tick. Though she had been tested for Bartonella as well as Babesia, the tests had been negative. I had known the tests for Lyme were unreliable, I should have known they were just as unreliable for co-infections. Having all these things together explained not only why she had not improved but also why she was deteriorating. We got a huge information dump that day. It was overwhelming and I wish I'd had the presence of mind to record our session. But I did take tons of notes. And still had to call for clarity a number of times. He sent off lab work, ordered more lab work, and got us going on a whole new program of attack which is becoming the New Normal around here.
We are very blessed that our dear primary care doctor, who had done her level best with what was available to her throughout all this, is on board and helping us keep costs down by re-prescribing everything in the hopes that our insurance company will pay for her treatment. We are also incredibly blessed by dear friends and family who felt led to help us financially, in prayer and support, in somewhere to stay on our trip, and in any number of other ways. Blessed also by the incredible patience of the staff at our Dr.'s office.
Overwhelmed by the continuing support of her little sister, for whom it isn't always easy having a chronically ill sibling. Being 13, she isn't always gracious about it but she is always ready to help.
Already Rowan has been fighting for years. This new journey is going to be a long one, but now there is, we are told, light at the end of the tunnel. I have charts and lists and alarms for her med schedule. We are still waiting for prior approval for the port she needs for the IV meds but in the meantime, we are attacking the co-infections. She sleeps a lot. She is in pain a large amount of the time. It's a constant round of meds, heating pads, pain control, detoxification baths and more meds but there are the rare good days and we hope that as we get going on this, there will be more of those.
The Lyme Dr. believes that the majority of her neuro symptoms are coming from the Bartonella, so we are hitting that first. Also, what she had been told were "stretch marks" he told us were actually, the "bulls eye rash" of Bartonella. I had actually brought them to the attention of our doctor some time ago but as the tests were negative, they were deemed "stretch marks". Again, not her fault, doctors rely on tests, reportable, black and white, quantifiable, measurable, diagnostic tests. So much of the Lyme and Co issues are subjective symptoms, stabbing pain, headaches, migrating joint pain, crushing fatigue, light sensitivity, depression, anxiety, and the like. You can't measure them, test for them, see them or pin them down in a lab. Additionally, the testing for Lyme and co-infections is dismally and frighteningly inaccurate. And thus, you are often left with vague, catch-all junk diagnoses, chronic fatigue, fibromyalgia (from the infectious disease doctor) or, to date the most insulting and harmful one she got from a rheumatologist, just overweight.
We are also discovering that her gluten free diet was a cinch in comparison to the new gluten free, sugar free, no fermented foods and high protein diet. Most of the gluten free things I had found are not sugar free so I had to start all over again. FYI, Van's homestyle waffles are a "go", and all gluten free sugar free breads are awful. Pamela's baking mix is a Godsend and she is living off the banana, applesauce muffins I make with it. Everything is relative to the fact that most of the time she doesn't feel like eating in the first place but some of the meds require food, some she can't have food within 2 hours of taking them or two hours before, hence the alarms and heavily scheduled timing of the protocols.
I spent 20 minutes last week in the hot dog section alone reading labels to find some without SUGAR. Why does a hot dog need corn syrup I ask you? (again, FYI, Nathan's Hot Dogs are sugar and corn syrup free) Not that they are a particularly healthy food, but they are fast and sometimes, that's what she needs.
There are all kinds of topics to write about running through my mind, the perils of "invisible diseases", the issues for siblings that have a chronically ill sibling, my own issues in dealing with a chronically ill kid, the hatred I have of some aspects of the medical profession, whether or not cheese is considered a "fermented food" and I hope to write about them all at some point or another. I really hope to write about the occasional hilariousness of this whole thing and the fact that we do have some great times and how grateful I am for our family as a whole. Because, as a sometime writer, I think that's when I am at my best. So stay tuned.
If you or someone you love has Lyme you have to be your own advocate, get educated. Start here. http://www.ilads.org/
and here http://www.lymedisease.org/
Understand the flaws in the testing and how to read a western blot. http://lymemd.blogspot.com/2009/02/understanding-western-blot.html
KNOW that if your test is CDC negative, the lab will mark it negative and it shouldn't. That is where we lost TWO YEARS in the battle.
Find and go to a Lyme Literate MD.
Get this book, read it, highlight it, underline it and go in armed with real information.