New support group for parents of kids with Lyme
LymeParents Yahoo group offers a forum for parents (and other family members) of children with Lyme disease to share information and mutual support.
Being the parent of a child with chronic Lyme disease can be a very isolating experience.
A decade ago, when my daughter was at her sickest, there were days that I couldn’t even leave the house. What I could do–usually when she was sleeping–was go online to Lyme support groups, which were a lifeline for me. They offered me information, encouragement, and sometimes, a place to vent my frustrations.
One that I joined was the Lyme-Aid-Parents yahoo group. I found it helpful to read about the experiences of others whose children were in a similar situation. I’ve been a member of it since 2006. Thus, I was saddened to hear that group leader Robynn Harris has decided to close Lyme-Aid-Parents at the end of March.
Therefore, I have started a new Yahoo group, called LymeParents. It’s part of LymeDisease.org’s network of online support groups. (Most of them are state-based, like CaliforniaLyme, NewYorkLyme, and MassachusettsLyme. LymeParents is not state-based. It’s open to anyone who is a parent or family member of a child with Lyme disease and/or other tick-borne infections.)
In my experience, groups like this are most useful when there’s a good amount of give-and-take among the different members. If you are the parent of a child with Lyme, won’t you join us? You never know when what you choose to post may be just what another person needs to hear.
Update: Yahoo groups no longer exist. Now, the group for parents of children with Lyme can be found here.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org. On Twitter, she’s @dorothyleland. (And LymeDisease.org is @LymeNews.)
- June 3, 2016 at 6:16 pm
This an introductory comment since we have never joined any type of forum, chat or blogsite regarding Lyme disease. Our 33 year old son has had Lyme disease with a co-infection of Babesia which wasn’t discovered until 3 years ago. All in all, he has had the disease with many of the complications for 6 years. He works full-time in a demanding position, supervising large groups of people who are aware that he has Lyme.Until recently, he had two maverick doctors who were working with him under the radar, prescribing many types of medications that are not covered under the CDC protocol. Just wondering if anyone out there has tried anything remarkably unique that has nixed their co-infection of Babesia, which, apparently, is one of the toughest infections to fight within this disease. Any suggestions will be greatly appreciated.
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