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.

By the time I learned more, I made the awful mistake of forgetting that my son had had a partially positive test, and while I continued to watch for signs that he might have Lyme disease, I considered that test to be non-informative. This fall, he developed a cough that did not go away for months, and was chronically ill with colds. Also, by now, I had observed a number of (rare) things that made me suspicious and one strange ongoing issue (stuttering the ends of words) that suggested a neurological problem.

I was told by one doctor that the cough might be psychosomatic (something I could not accept), and another suggested allergy tests. Remembering that he’d been tested for allergies about a year ago, I requested his old test results from his pediatrician. As I was looking them over (this was early November 2009), I happened upon his Western Blot results, which had been done at the same time. I was horrified to see a positive result (remember I’d forgotten) that included a very specific band for lyme disease, the 39k.

I spent the rest of the evening feeling guilty, crying, speaking with my husband and doing research. I also put together a chart detailing all of the unusual symptoms I had noted about my son over the past few years and a brief history. I was unsure what mattered and what didn’t, and my data is not very detailed or comprehensive, but it is a start at documenting some of the things that concerned me.

A historical overview of my son’s symptoms. Fall 06 through 10/07 likely tick exposure period. Note flu 5x in 07 and 5x in 08. Note days sick: Scale is 0-31. 6/07; 2/08-5/08; 11/08 and 10/09 all >15 days of month ill. Note that many of these symptoms may be irrelevant, and my records are not complete. This was a first pass at things to at least ask a doctor about. 

  • Fall 06/10/07 likely tick exposure (mom bitten and contracted lyme disease)
  • 11/06 (just barely 4) became ill with ear infections & many colds (unusual for him). For the first time in his life, needed antibiotics, twice (12/07 and 1/08). Has been more ill than normal ever since.
  • 3/07 we discovered a major mold bloom in the children’s bathroom in our house. We don’t know how long it was there for, but it was severe enough that we suspect a long time
  • 5/07 My son comes to me in tears – “Mommy I can’t get my words out.” Stuttering diagnosed.
  • 3/08 My son had flue like symptoms 5 times in the 07/08 winter, and had been sick for > 15 days of the last 2 months. Major symptom was glassy-eyed fatigue and non-functional immune system. I insisted on a Western Blot test. 39k and 41k are positive
  • 2/09 My son was noted to be commonly stuttering ends of words. Speech therapist says this is normally neurological
  • 9/09 My son develops another round of repeated colds and a cough he can’t get rid of. I eventually discover the old Western Blot and start exploring Lyme disease as a possible cause
  • Other issues: develops fear of heights, can’t do things he wants to do (e.g. amusement park rides); commonly complains of belly hurting; very rare complaints of needle like pains in face; very very clingy; complains frequently of itching, pain, and so on in random places.

We planned to take several steps to confirm what I had discovered, but in my heart of hearts I had no doubt that my son had been exposed to Borrelia Burgdorferi (Bb). Some of the questions I needed to answer for myself and will discuss in upcoming posts included:

  • Which of his symptoms, if any, are indicative as Lyme disease? What else might be making him sick?
  • Is it possible that he has Bb but does not have active Lyme Disease?
  • What treatments, if any, am I willing to consider?
  • Who should treat him?
  • What additional tests should I consider running, and what would they tell me?
  • What do I say to my son about all of this? How do I give him a feeling of control and get him to participate in what’s going on without confusing or scaring him?
  • How do I help a child who hates medicine in almost all forms and generally refuses it, see that this time he really does need to take it, and get on board with that?
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6 Comments

  1. Renee said,

    January 4, 2010 at 8:19 pm

    I am so sorry to hear this. How difficult for you and for him. Lyme is hard enough for adults to treat, let alone a child. You are in my thoughts at this time.

  2. January 6, 2010 at 10:31 pm

    [...] we have since confirmed that this was a *POSITIVE* test, despite what is said above. See “Diagnosing Lyme in my son” for more details. Possibly related posts: (automatically generated)Brief updateOff [...]

  3. January 7, 2010 at 9:35 am

    [...] 7, 2010 at 9:26 am (my-son, thoughts) Tags: doctors, thoughts Once we figured out that my son had probably been exposed to lyme disease, my first step was finding a doctor who could confirm my layperson’s diagnosis and help us [...]

  4. Mattea Gonzales said,

    February 23, 2010 at 12:37 pm

    In the autism community, we have some thing called “lyme induced autism”, some cases stay dormant, and travel from mother to child in utero, and awaken when the child id vaccinated. or over vaccinated should i say, it ia a known fact that lymes induces autism, and that bacteria induced ocd as well as autism. perhaps you have had it for a while and it decided to go into an active state. some cases that we have dealt with earlier are from already 2 women who got it from cleaning rat feces, they weren’t bit by ticks, and the area was New Mexico.

  5. Jill said,

    July 9, 2010 at 12:16 am

    Hi, I have been searching for a Lyme doctor in New Hampshire but don’t know where to look. My son got bit by a deer tick in June 2008, a month later started acting strange. He started staring, not responding when talked to, he said his arms and legs “feel picky”. I brought him to his doctor who told me since he didn’t have a lyme rash he didn’t need to be tested. Between then and now there has been several times times when these symptoms reappear. My son had a hard time in kindergarten, not academically but socially and not being able to pay attention. He often complained that it’s really hard to think. I questioned whether or not he was autistic but symptoms seem to get better and then come back again. what symptoms was your son experiencing?
    thank you for your time! Jill

  6. Rebecca said,

    April 22, 2013 at 4:49 pm

    Hi, how is your son doing now? What treatment was he given? I am in a similar position as you. My son had bands 39 and 41 positive and he is developing many strange rashes throughout his body. I got him tested again and going to see what the doctor recommends. It’s a nightmare. Thank you for any info/help you can give me. Rebecca.


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