Re: New diagnosis of Lyme - support groups?

October 31, 2010

My daughter was diagnosed last year, her senior year of high school. We have no

local support groups here in this part of upstate NY, but I want to share with

you the website she has recently found for support. It's called LymeFriends.

It's a relatively small group with many subgroups. My daughter has put

questions forth, such as what to do about an itchy PICC line dressing. The

outpouring of support has been terrific. I have joined the parents' group and

find it very helpful. You have to be " accepted " by the administrators, but they

get back to you very quickly. Go to http://lymefriends.ning.com/. Let us know

how you like it!

My daughter has been in treatment for 7 months and has also feels worse than

ever. When I think back to what she was doing before: working, volunteering,

and going to school, it's hard to believe she could do all that. Now she is

taking one class in college, has quit her job at the sub shop, and has no energy

to volunteer. She is just concentrating on getting well with the guidance of a

great LLMD. I know how hard it is to watch your child suffer, but try to make

her as comfortable as you can. I found that once I gave up thinking about all

the losses this horrible disease (or should I say " diseases " ?: Lyme, babesia,

and bartonella) has caused my daughter, it was easier to get through each day.

Also, she got tired of me always asking " how do you feel? " She's a teen and

just wants to be normal. I let her tell me when there is something wrong and

it's better that way.

Good luck!

October 31, 2010

We are all from different areas so it is hard for this to play out the way

it should. I have three daughter in treatment currently and it has been

tough. My oldests (18 and 17) have been in treatment for 2 1/2 years. They

do get worse, the schools have been horrid and we have had to re-evaluate

how to get them moving forward. My daughters have been sick for years, so

school (high school) has been non existent. Thats hard on anybody. My

girls would rather not talk to others about this and rely on me to figure it

all out. I am a member of Lyme Friends and have meet some really wonderful

people both parents and young adults. I talk to them all the time about

different subjects. I have always had responses to any question I have and

try to answer anyone that presents a question or topic I know about. This

illness is all over the place and all you can do is try to gather info that

pertains to your own situation. I live in VA and we have a moms support

group that I do not think I could survive without their input. Wherever you

are I bet you can find a number of people locally that are going through

some of the same struggles. It is sad but so true that this is so. Start

out on Lyme Friends and they also have a facebook group. Post where you

live, how old your child is and ask for contacts. I wish you well, and I

will say that I think you and your daughter need a support group. This is an

illness you should not go through without support. Also you mentioned that

you have a great LLMD. See if he can put you in contact with others in your

area.

Also this group is an outlet for great info. Just ask away any questions

you have.

Good Luck

On Sat, Oct 30, 2010 at 3:09 PM, ginamglenn <ginamglenn@...> wrote:

>

> 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.

>

--

Farrell

lesliebfarrell@...

October 31, 2010

Hi -- where in No CA?

My daughter is going into her second year of homeschooling with a lot of pain.

She's only 13 though. We have found tht seeing and just hanging out with a

friend who also has lyme and is quite ill and home from school has actually made

her feel a lot better.

We are in No Cal ourselves -- bay area -- if you as lyme mom want some

support...

natasha

________________________________

From: ginamglenn <ginamglenn@...>

Sent: Sat, October 30, 2010 12:09:59 PM

Subject: [ ] New diagnosis of Lyme - support groups?

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.

October 31, 2010

We too are in the Bay Area, we live in the Santa Cruz mountains, Los

Gatos/Saratoga area. I would love to brainstorm compare notes sometime. Thanks

for responding.

Sent from my iPad

On Oct 30, 2010, at 6:08 PM, Natasha Moiseyev <nmoiseyev@...> wrote:

> Hi -- where in No CA?

>

> My daughter is going into her second year of homeschooling with a lot of pain.

> She's only 13 though. We have found tht seeing and just hanging out with a

> friend who also has lyme and is quite ill and home from school has actually

made

> her feel a lot better.

>

> We are in No Cal ourselves -- bay area -- if you as lyme mom want some

> support...

>

> natasha

>

> ________________________________

> From: ginamglenn <ginamglenn@...>

>

> Sent: Sat, October 30, 2010 12:09:59 PM

> Subject: [ ] New diagnosis of Lyme - support groups?

>

> 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.

>

October 31, 2010

==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

>

> 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.

>

October 31, 2010

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