RePost: Open Letter to Lyme Youth

Dear Lyme Youth,

Hello, I am glad to have a chance to have “met” you online, or at least received notice from Julia that you want to join us. Thank you for getting involved. As I’m sure you all know, our cause is a crucial one. Every step we make towards advocacy and awareness builds prevention. We don’t want anyone else to have to suffer from Chronic Lyme! I know we can all work together and support each other through this battle.

I guess a short introduction is in order. I’m Ariel, and I’m organizing LymeYOUTH for Lyme Action PA. I’m twenty-three, and I have Lyme and co-infections. I was studying community organizing at the University of Pittsburgh, but I am on medical leave due to my illness. So I have a double stake in this—I am dedicated to social justice and I want to spread awareness about this terrible disease. But I’ve never been a leader before, so please bear with me as I learn. My biggest hope for our movement is that future Lyme sufferers will get prompt, adequate and respectful treatment within the medical community.

We are organizing right now for a march on Harrisburg during Lyme Disease Awareness month. Hopefully, I’ll see you and other Lyme fighters there. Senator Greenleaf, who has been instrumental in trying to pass the Lyme bill for years, will definitely be there. We might even get Darryl Hall, who has Chronic Lyme disease, to play at the rally.

I am organizing the stories of youth with Lyme Disease and trying to create a database of your experiences. If anyone feels comfortable sharing their personal story with me, please let me know. I’d love to talk to you over the phone or through e-mail, whichever is best for you. If you aren’t comfortable, that’s alright, too. I have created an anonymous survey, which you can take right here.

Continue reading “RePost: Open Letter to Lyme Youth”

diagnosis, kids, my-son

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!