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: Read the rest of this entry »
Tickwatch!
June 24, 2010 at 9:50 am (my-son, thoughts)
Tags: family
I am on tick watch. I have to keep my eyes open every day, do tick checks on my kids, encourage them to enjoy the outdoors with my heart in my mouth, teach them to be safe without teaching them to be fearful, never completely let my guard down. I am on a trip, to a place where ticks are everpresent, in a season when they are abundant. Read the rest of this entry »
So sensitive…
March 16, 2010 at 10:36 pm (kids)
Tags: doctors, family, thoughts, treatment
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.
Loss and Control
January 20, 2010 at 8:33 pm (my-son, thoughts)
Tags: family, thoughts
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). Read the rest of this entry »
Diagnosing Lyme in my son
January 1, 2010 at 7:57 am (diagnosis, my-son)
Tags: family
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. Read the rest of this entry »
The impact of chronic illness on young kids
November 1, 2009 at 8:53 pm (my story, thoughts)
Tags: family, thoughts
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. Read the rest of this entry »
Thanks, mom
May 20, 2009 at 9:32 pm (my-son, thoughts)
Tags: family, thoughts
I’ve been trying to think of the right way to say thank you to my mother for over two weeks now (ever since I realized mother’s day was coming up :). But it was only recently that I finally realized what I want to do. This post is for her.
Let me start by describing some of the things she and my dad have done for me this year. Perhaps the most important, to me, is the fact that they seem to have cured my children of a series of immune dysfunction. The children started having colds that they could not lick, ear infections, and even a sinus infection once, the same year that I became symptomatic. For many months of each year they were sick more days than they were healthy. Doctors all told me not to worry, they were in the range of normal. I of course continually fought with the fear that they had Lyme disease like me. My mother felt that our basement smelt moldy, and offered to buy us a device she had found, called a Wave/Humidex. I was skeptical, but she insisted (and paid) so I had it installed. The same month it was installed, my children went back to normal (this was October) and they have been fine ever since. My interpretation is that the mold bloom we had got all of us sick, and in their case, continued exposure to mold kept them symptomatic up until this device was installed. Perhaps it gave me a boost too.
Then my mother-in-law developed extreme pain severe enough to put her in the emergency room. Five days later, the hospital was still flumoxed. My mother suggested a fairly obscure possibility that she was familiar with because it sometimes affects pregnant women. She also knew a diagnostic test for it. No one here had heard of the test, and they mostly ignored the suggestion … but in the end, with no other ideas, they tried the test (walking backwards relieved her pain) and ended up giving the diagnosis my mom had suggested days before. Thanks to her help, my mother-in-law left the hospital with the correct support in terms of physical therapists. Read the rest of this entry »
Top Ten Things you can do for someone with Lyme
October 21, 2008 at 1:34 pm (thoughts)
Tags: chronic illness, family, friends
So I’ve been musing recently about the role that friends, family, and other loved ones play in my experience of lyme disease. Maybe it would be more accurate to say that, on occasion, I’ve been fuming, sometimes I’ve been impatient, and frequently touched and warmed by the kindness, love and patience of those close to me. There’s no question that this is difficult for everyone involved, not just the patient. And us patients need to remember to have patience — we’re lucky to have people around us who care enough to try. But the people around us need to remember some things too. So … to give some advice on the bad and reinforce the good, here’s my attempt at a top ten list of things that others have done for (or to) me.
If you have lyme (or are part of the network caring for someone with lyme), feel free to write in a comment with other things that should go on this list, I’m sure I’ve missed some.
10. Educate yourself about lyme disease so that you can offer meaningful advice about my treatment. Lyme disease patients have to make a lot of their own decisions about how they should be treated, and having another person with whom to discuss the options is incredibly valuable. Also, reading about lyme disease will help you understand my symptoms.
9. Be understanding if I don’t seem interested in your new amazing approach to treatment. There are a lot of options out there, and I spend time thinking about as many as I feel able to process at any time, but I can’t treat anything by committing to one approach and then changing direction every time I learn about something new (which would be daily or weekly when I’m doing research, probably monthly when I’m not actively seeking).
8. Remember that any unpredictable chronic disease can have an emotional impact. Lyme can also cause neurological changes that affect the emotions. If I snap at you, become anxious, burst into tears, or otherwise act out, be as supportive and understanding as you can.
7. Don’t assume you know how I’m doing. My symptoms change radically from hour to hour and week to week. If you ask how I’m doing, don’t suggest the answer, even if I look particularly bad or good. Many of my worst symptoms are invisible. Ask.
6. When I answer, don’t tell me that you are just as sick, that your aunt is just as sick, or that anyone 30 years older than me would have the same symptoms. While it is sometimes helpful to hear that I am not alone, or about folks who I might be able to ask for advice, these comparisons can also make me feel as if my experience doesn’t matter, or I’m complaining too much, or I’m over reacting.
5. Help takes many forms. Some of the things I’ve needed most include someone to talk to, a ride home on a bad day, fetching something so I don’t have to get up and walk across the room, time to myself, a meal, a smile, a hug, a distraction, and a massage. As a caregiver, the very fact that you’re reading this means that you’re giving a gift, and you’ve probably done far more for me (or whomever you are helping). Even something that may seem small to you means a lot to me (though accepting that gift is not always easy, and it can be hard to find the right ways to acknowledge it). Also my needs are unpredictable and long term, and I don’t always know what they are, especially ahead of time. If you don’t know how you can help, just ask.
4. Trust me. If I say I can’t do something, don’t resent it or expect me to just try harder. I may seem fine, I may be fine, and I may still know that if I don’t conserve my energy something more important will be impossible later today. If I say I will do something, don’t try to stop me even if it seems like a waste of time or energy. It may seem unimportant to you, but I probably have a good reason for choosing to do it. And please, never accuse me of using my symptoms to get something, or get out of something. People with lyme disease are not sick because it’s convenient!
3. Offer advice (or better yet, information) about things you know, but don’t get angry with me (or pressure me unduly) when I choose not to follow your advice. I know that watching someone you care for suffer when you think you know how to fix things must be incredibly difficult. I’ve been on both sides of this: For example, someone close to me has cancer, and I personally believe that if he would start a vegan diet it could increase his life span. I wish I could just make him do it, but he has chosen a different path, and my not accepting that will only make things harder for him. I’ve also been on the receiving end of well-intentioned suggestions from several family members. I have enough doubts about every choice I make. Anger (and pressure) don’t help me, they only make it harder.
2. Believe in me. Lyme is invisible, sometimes the cure seems impossibly far away. I need you to believe in my symptoms, have faith that I will get through this, and help me marshal the strength to keep fighting
1. If you do nothing else, remember that I am not defined by my disease. If you are my friend or family member, then I am your friend or family member. Lean on me, confide in me, laugh with me, don’t treat me like I’m fragile or incapable.
