Re: Re: New diagnosis of Lyme - support groups?

November 1, 2010

On 10/31/10 6:14 PM, jblral wrote:

>

> Here's a blog I wrote on this topic last spring:

>

> Teens with Lyme--Finding the light IN the tunnel

>

> http://www.lymedisease.org/news/touchedbylyme/384.html

>

> >

> > After a very long year of many doctors and mostly a diagnosis of

> fibro. we have arrived here! My high school senior is now essentially

> being home schooled due to her pain and other symptoms affecting her

> ability to make it school. We are seeing a Lyme specialist and are

> starting by going after the co infections first. I am so sad to see

> how hard the treatment is on her. She is so much worse since she

> started all the meds. & supplements! I try to hold onto the feeling of

> this being progress, at least we have a real diagnosis, but it is

> emotionally exhausting seeing her suffer both physically and emotionally.

> >

> > I am enquiring as to the pros and cons of local support groups. I

> have heard mixed reviews, support and peer interaction is the goal but

> is that what she will get? I have heard they can be emotionally tough

> as you get caught up in everybody elses struggles and symptoms. Also i

> would lovw to find her peer support as in with other teens. We live in

> N. CA. Any input is appreciated, thanks.

> >

> Sounds like me all over again. I was dx with fibro for many years and

> dropped out of school. They didn't find out it was lyme till I was 25!

> Support is the BEST! Being able to talk to other people dealing with

> this disease that many do not understand ment the world to me. I also

> suggest online support groups. I can access them easy when I have a

> hard day. LYME FRIENDS is a wonderfu online support with live chat.

>

Ir

November 3, 2010

I agree that you should at least check out any support group before

sending your teen. I don't have Lyme, and I find the support groups to

be very draining emotionally. I would not send my daughter (also a HS

senior) to any of the adult groups I have attended: many of the people

have had really terrible experiences and some of the pessimism and anger

would be too much for her to process. Because she doesn't manage her

own care (avoids at all costs is more like it) the talk about herbs,

medications and doctors would be stressful as well.

She has a new best friend who has other health issues. They go do stuff

together, talk openly and frankly about their limitations and strengths,

compare notes on anxiety meds and tease and comfort each other. This

has helped her emotionally more than anything else in her recovery.

On 10/31/2010 11:12 AM, jblral wrote:

>

> ==I sent you a private message, but I want to weigh in on the

> group discussion, too. (I come to this topic as the mother of a girl

> who became severely debilitated by Lyme at age 13. Now she's 19, and

> greatly improved after grueling treatment.)

>

> I help run a support group in Sacramento. I don't recommend that

> children/teens come to a support group with adult patients. If you

> were in our area, I would suggest that you as the parent of a Lyme

> patient should come, for support and information. Young people with

> Lyme can be extremely fragile emotionally, and I do not recommend

> putting them into a situation that is not specifically geared to their

> own needs.

>

> The California Lyme Disease Association has offered two workshops for

> teens with Lyme at their patient conferences in 2009 and 2010. This

> was a session limited to teens, and run by a family therapist with

> experience helping teens with Lyme. It was an emotionally " safe " place

> for teens to grapple with their own issues regarding parents, friends,

> school, life aspirations, etc. My daughter went both times, and really

> appreciated the opportunity. She still stays in Facebook contact with

> some of the teens she met through this workshop.

>

> Periodically, different email support groups for teens start, last for

> a while, and then fade out as the participants " age out " of the group.

> If you as the mom could connect with other parents of Lyme teens, you

> might be able to form your own email group for the teenagers. Just a

> thought...

>

> Lyme is the pits for anybody, of any age. But there are particular

> problems for teenagers dealing with Lyme, and it's important for

> parents to help them navigate these turbulent waters. Hang in there.

> It can get better.

>

> Dorothy