A mom’s worst fear

ADDENDUM 11/24/2010: I’ve modified this post to reflect some of my more current understanding about Lyme disease. Mods are marked with the word ADDENDUM below.

I’ve been worried about it since I got my diagnosis… but it was only recently that those worries turned into action. I brought my son in to see his doctor last week because he had another ear infection, and we sat down and talked about how often he’d been sick in the last year and a half … and I was shocked to discover a pattern similar to my own — sicknesses of various sorts monthly almost the entire time. Sometimes even more frequent, and for one two month period less frequent. This is a child who had never had an ear infection until the year he turned 3, and was not frequently sick. I was also concerned because he seemed fatigued more frequently than I’d expect — in fact, his teacher told me that he often appeared glassy eyed by snack time.

I decided that I couldn’t wait any longer and asked his pediatrician to test him for lyme. If I was right, and didn’t find out for another year or longer, I’d be so angry with myself. If I was wrong, I’d feel bad that I made a child who is scared of needles get blood drawn, but it seemed like much less of an issue. Luckily (and of course) my pediatrician was able to take a less biased view of the whole situation. She pointed out that we needed to test for other causes, so we did allergy tests, blood work, and a Western Blot. We skipped the ELIZA and some other tests that he might need, but even so he had 8 vials of blood drawn. Needless to say, this was very traumatic and I’ve been feeling guilty all week. Until today.

Today I called his pediatrician, and the office said the blood work had come in. I requested that they have a doctor look at it, and my heart sunk when an hour later the doctor called to tell me that his IGg was positive (this means that he may have been exposed, but not recently). My first reaction was to imagine him going through everything I’d been through. Logic was completely absent, and so was self control. Since then 3 hours or so have passed, and I will have even more information after I’ve seen the test results (I’ll probably post an update then). In the meantime, I contacted a very special pediatrician who is based in Pittsburgh and is a leading researcher on pediatric lyme disease. He’s been a great help to me in interpreting my illness and he also helped me see my son’s situation more clearly. I also spoke with a doctor in Ohio who specializes in integrative medicine and will talk later today with my homeopath/MD. Here are the results of my conversations so far:

  • The Western Blot, especially in absence of an ELIZA could indicate that he has a disease other than lyme (such as CMV or Epstein-Barr). This is because it tests for antibodies, some of which are not specific only to Lyme. When I see it, I’ll know much more about how likely it is that he really has lyme disease. Everyone I spoke with wants to see our results to interpret them more carefully and we will be faxing them around later today.
  • It is expected that he would have an IGg but not IGm both because he’s had these symptoms for some time, and because (if this is lyme) he’s only been in Frick park once since my diagnosis and was likely exposed to it when I was — ADDENDUM 11/24/2010: I have since learned that this over simplifies the situation and really is only believed by folks on one side of the lyme wars. In my son’s case, this interpretation turned out to be incorrect.
  • Fatigue, as a symptom, is fairly rare in young kids with lyme, and might indicate other illnesses — ADDENDUM 11/24/2010: This is also disputed.
  • Children tend to respond very well to treatment. Oral antibiotics for about a month is not an uncommon treatment — ADDENDUM 11/24/2010: This is a very short amount of treatment, especially for a chronic case of Lyme disease
  • The lyme researching pediatrician will see us this Friday at his clinic at Children’s Hospital. If it is Lyme, he can help us with the treatment. If it is not, he will help us track down what it is. It’s great to have such a top hospital so close by.

I am also diligently looking into alternative options (still searching for them for myself, and of course would want to understand if they could help my son). I spoke with the folks in Ohio at the integrative medicine center in Columbus. They seem actually willing to work in the context of multiple treatments and not as solo silo-type doctors. They specialize in helping folks who seem to have gotten sicker than one would expect from something, by adjusting diet and other things to try to make the immune system work better. By looking at bloodwork, they can tell if they are likely to be able to be of help. They are willing to take a look at both my bloodwork and my son’s if we want. In addition, I have a friend who’s nephew has lyme disease. He is being treated with ongoing antibiotics and has been on them for 3 years because his symptoms recur when he goes off them. I truly hope that my son doesn’t need that sort of treatment, but I asked her for this doctor’s phone number so I can find out more about when that sort of approach is recommended and used. It is very scary to be in the position of deciding which side of the lyme wars I believe in not only to guide my own future but that of a child who is just at the start of his life. I don’t want to screw this up!

7 thoughts on “A mom’s worst fear

  1. My 13 year old son has been diagnosised with Lyme. Because he tested positive only for the Igm and not the IGg it is suspected that he contracted it recently…I am not as certain about that because for the past 5 years or so he has had fevers, headaches and a sore neck. Is it possible that he has had it longer if the IGg is negative?
    Also, he has been pretty much bed or couch ridden for a month. I am so worried and have not found a great doctor yet. My doctor told me not to worry. What an awful and stupid comment. Any information is apprecaited.

  2. My recommendation is that as a mom, you need to trust your gut. Pamela Weintraub’s book Cure Unknown covers some of the reasons why a Western Blot test may not be accurate. If you think that he is not receiving adequate treatment, you are the best advocate for him, and you will need to search for a doctor who takes his symptoms seriously, and either works with you to investigates their causes (if not lyme) or treats them (if lyme).

  3. May I ask who you saw (physician)? I’m looking for an adult doc and even a pedi might see me or recommend. Thanks so much :)

  4. I recently and finally got a positive diagnosis of lymes and multiple co infections.I am a mamma of 3 and while I was misdiagnosed was still nursing my youngest.Do you know about passing it through breast milk or to my husband?Still trying to find a good dr we live in Oregon thankyou for any info blessingd

  5. Hi,

    I’m sorry to hear that you’re going through this.

    There is definite evidence that Lyme disease can be passed congenitally. Here’s a summary of some highlights of a Lyme conference I attended including one talk on the topic: https://gotlyme.wordpress.com/2009/10/28/a-room-full-of-people-who-care-about-lyme-disease/ My daughter and son have both been diagnosed with Lyme disease since this post, and I believe that my daughter may have gotten it congenitally.

    I believe that live spirochete has been found in breast milk, however I don’t think there’s proof that Lyme has been transmitted that way. Haven’t researched it much.

    I did have to wean because of my Lyme disease (here’s a description of part of that process https://gotlyme.wordpress.com/2007/10/04/cat-scan-weaning-unweaning/ — I weaned again when I got the diagnosis and went on the IV antibiotics, with the help of a big party for my then-two-year-old daughter)

    As far as sexual transmission goes, there’s no proof that it happens. Here’s what little I could find about it: https://gotlyme.wordpress.com/2009/08/13/sexual-transmission-of-lyme-disease/

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