diagnosis, infection, my story, treatment

It had to happen one day…

I love being outdoors, and I love being outdoors with my children and teaching them how beautiful and special nature can be. So I knew that a day would probably come eventually when one of us would be bitten by a tick. My daughter has a morning of wood time every friday and we take hikes and walks in the woods fairly frequently. As a result, I am very very careful to do tick checks at the end of any day where there might be a risk.

Since I’ve been feeling much better (and in fact finished the unique treatment I began this spring), I had a hike planned with my family in the swiss mountains. I let my guard down and didn’t insist on socks around pants until I realized we were heading off trail (and found my missing tick spray); we didn’t wear light colors, and I generally relaxed more than usual. I should know better.

Then on the train ride home, we discovered an adult deer tick crawling down my husband’s arm. So when I got home I insisted on doing a very very thorough tick check on each child, and gave them a hot bath to boot (on the theory that if I missed one maybe it would drown :). I also checked my husband and he checked me.

As you’ve probably guessed by now, we found a tick. A nymph tick, attached to my hip. Interestingly, I had experienced some discomfort in the area near the tick during the train ride home (and attributed it to the fact that my back went out last week on that side). After finding the tick, I can’t help wondering if perhaps it was something else (I’ve had no back pain for a week and when I had it it was quite a different sort of pain). In any case, once the tick was discovered I did the following:

1) I went to the website of a reputable lyme organization (lymedisease.org) and looked up how to remove a tick  

2) I followed the instructions carefully, with my husband’s help, and put the tick in a ziplock bag

3) I emailed my doctor, a tick expert, and asked what he knew about the standard of care in this situation. He pointed me at a very interesting paper titled “Accelerated transmission of Lyme disease spirochetes by partially fed vector ticks” [1]. The article shows that a nymph tick attached for as few as 8 hours can transmit Lyme disease spirochetes (to mice)  if it was previously attached to an infected host and partially fed.

4) The normal treatment if you catch infection immediately is 3-4 weeks of antibiotics (usually doxy), according to the ILADS guidelines (the standard I choose to use when considering treatment options).

I considered the situation. My tick was was attached for 8 hours or less (I don’t know when I got it, only when my hike started), and was a nymph tick. I don’t know whether it had a previous feeding or not, but I do know that if it did, there’s a significant chance that I could have acquired an infection.

As a result, I decided to treat prophylactically, and simultaneously to get the tick tested for Lyme disease (the test available here only tests for that, but co-infections are apparently less common in Switzerland). If it comes back negative, I can reconsider whether to continue the antibiotics.

This leaves me with one important question: Have I made the right larger choice. Is the risk of Lyme disease, and the concern over getting it, worth being out and about in nature? So far, my answer has been yes. But the outcome of today’s events may affect how I think about all this. I am most thankful, though, that it was myself and not a family member that was bitten. I at least know what needs to be done and am willing and able to do it.

[1] C. M. Shih & A. Spielman, Accelerated transmission of Lyme disease spirochetes by partially fed vector ticks” J. Clin. Microbiol. November 1993 vol. 31 no. 11 2878-2881

kids

… and then there were three

I received the news a few weeks ago that my daughter also has lyme disease. Her Igenex labs (Western Blot) were clearly positive, where they had previously been indeterminate. For my son and I, this was never an issue, and so I hadn’t read up on it much before (though I was familiar with the concept thanks to Weintraub’s book Cure Unknown). Here’s what I found: Continue reading “… and then there were three”

kids, my-daughter

So sensitive…

My daughter is four, and she is a puzzle to me. She has always seemed so strong, so robust, so determined, so healthy (unlike my son). Yet she also shared the repeated summer time flu and frequent sickness of my son up through January of 2009, after which her health was excellent. Despite this, to be sure, we got her tested, and her test results were ambiguous, like his. She otherwise seemed fairly healthy, except for frequent complaints of stomach pain that we tended (perhaps too easily) to blame on her clear wish to emulate her brother on all fronts.

As a result, we decided (with input from the doctor) to do a test on her that involved giving her antibiotics and then testing her urine for lyme DNA. This provocative use of antibiotics normally goes on for a week, but the doctor recommended treating her for a month and then revisiting things. This was  because her test results combined with her history were worrisome. Since then she also tested positive for mycoplasma, a co-infection that may be associated with Lyme disease. It was thought that treatment (for a month) was safer than the possibility of Lyme symptoms developing.

At first, treatment went fairly well, with my daughter having a much easier time downing the drugs (at least on the surface) than my son did. However, over the past couple of weeks, she’s had more trouble with it. About 10 days ago, she got the flu and couldn’t hold the drugs down, and after we restarted them, she seemed to get more and more unhappy with them. At the same time, she did not seem to recover her energy, and her belly pain became more and more of an issue. It is so strange to see her actually acting sick, to the point that it sets more than a temporary limit on her activity levels, that my husband and I decided to stop the drugs (without input from the doctor). We speak with him tomorrow and I don’t know what he will feel about our decision, but my gut said that the antibiotics were hurting more than they were helping and I went with it.

What’s particularly unusual about my daughter is that, at a time when my son seems to be coming out of his shell in so many ways, she suddenly seems to have sunk into hers. Normally a robust, outgoing child, right now she desperately needs to be close to us, reacts to even the slightest bump as if she’d drawn blood, and is very fatigued. There are dark circles under her eyes, and tonight she was so tired that she volunteered to go to bed without a book and before her brother, an unheard of event. Even her dreams are plagued by strange worries. Her most recent one shocked me with its darkness — she dreamed that all the creatures on earth (“the people, the animals, and even the gnomies”) were dead. Even more wierdly, it’s as if she’d read my mind — I just finished a book about climate change that sent me to bed with the same worries.

I know about herxing, I know that sometimes you get sick before you get better, but she got better on her own, before we started any treatment, and now she seems worse. It is impossible for me to know what caused anything in her case, and I certainly don’t have any answers except one — with both my children, I have to keep following my gut. I just hope that she recovers quickly, whatever the cause of her symptoms.

kids, my-son, thoughts

Loss and Control

In the past couple of months, I’ve had to make an unexpected transition, from patient to caregiver. As a caregiver, I am faced with all the uncertainties I faced as a patient, and the additional responsibility of asking an innocent to step into the unknown with me. He has placed his trust in me completely, and I must provide a wall of certainty against which he can rage and storm over the trivial (powdery textured pro-biotic/yogurt mixtures) and the tremendous (the fear and pain of a blood draw that often ends in nausea and vomiting). Continue reading “Loss and Control”

diagnosis, kids, my-son

Diagnosing Lyme in my son

I have waited a long time to make this post, for a two reasons. One is that I am still weighing the implications of writing about someone else’s life so publicly. Another is that I felt uncomfortable discussing anything here before I had told him what we discovered. I have resolved the latter and, at least for now, come to terms with the former. Let me explain:

About 18 months ago (March 2008), my husband and I had my son tested for Lyme disease because he had become chronically ill and very fatigued, unlike his younger self.  Although part of his test (the test for current infection) came back positive, we were assured that he did not in fact have Lyme disease. I consulted with an ID doc who specializes in Lyme disease to confirm this and was assured that his symptoms were “within range of normal.” At that time, I had not yet learned enough about Lyme disease to put myself into long term treatment, I still believed / wanted to believe the doctors who told me I was cured, and I believed / wanted to believe the doctors who told me my son was fine. Continue reading “Diagnosing Lyme in my son”

my story, thoughts

The impact of chronic illness on young kids

Those of us with chronic conditions spend a lot of time wondering how to manage their impact on our own ravaged bodies and spirits. But along the way, it’s hard to ignore the impact they have on our families. I know that has been a concern with me in my own family. Unlike the extended family which may or may not grasp what is really happening, the impact on the immediate family can be very direct. Even for them, though, a condition like Lyme disease can be confusing and invisible. How this affected my husband and our relationship is a topic for another post, but what I want to concentrate on here is how it affected my children. I have a (now) 4 year old and (almost) 6 year old in addition to a husband who have journeyed through my chronic condition with me over the last three years.

I have found myself writing about this more than once in the past few months, often in impassioned emails supporting friends or acquaintances suddenly thrust into a form of mothering they neither wanted nor planned for. For myself, perhaps the hardest part of this is finding the balance between putting myself first and protecting my children. Here is what I have learned over the years, and some details on how I coped. Continue reading “The impact of chronic illness on young kids”