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Welcome to both and Lesley! I'm Lizz and live in Livonia NY, about 30

miles south of Rochester. My kids are all grown, my husband and I teach at

the local school (3rd grade for me and technology for him) and I have a shop

in Geneseo to sell my " stuff " . You'll love this list. Feel free to discuss

anything.....we do!

Lizz

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  • 6 months later...
Guest guest

In a message dated 4/7/02 9:20:27 AM Pacific Daylight Time, writes:

i am a new mwmber to this suppport group but have been on prednisone lots os times and my doctor tape me down very slowly. I usually have to go to 5mg every other day for a week or two before i can stop because your pituitary gland needs time to restart.. Of coure it depends on how long you have been on it and what your dr. recommends.

Hello, . Welcome to the group. Have you considered staying on a maintenance dosage of Prednisone, as you have had to restart it many times?

Harper

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  • 3 years later...
Guest guest

You don't always have to buy it. On the Kombucha Exchange (the page I gave

you) you may email people and most of them are willing to give away their

babies Kombucha. It is much easier to get them this way, you don't have to deal

with shipping, wich is not always good for the culture. This is how I got my

first one, from a nice lady in my area.

God Bless!

Ileana

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Guest guest

>

> _http://www.kombu.de/suche2.htm_ (http://www.kombu.de/suche2.htm)

>

> Hi ,

>

> Welcome!

>

> Please try the page above, you will find maybe some people willing

to give

> you a baby with the starter. Scroll down the page until you get to

the USA,

> than you will be able to choose the closest person to the place

you live.

>

> Good luck,

> ILeana

Thanks ILeana! :o) I emailed someone to see if they would send me

one. We'll see what happens. If not, then I guess I can always buy

one from one of those websites?

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  • 5 years later...

:

I'm glad you introduced yourself. When I hear stories so similar to mine, it

helps to confirm we are on the right road in treatment. I wasn't crazy afterall.

I'm sorry you had to go through this with your boys. Do they have congenital

Lyme? My boys are 15 and 17 with congenital Lyme. One really sick, one not.

I lived in Rocky Mount, NC for 3 years and it was there that I started getting

so sick. We moved to get away fromt he pine pollen, but it was actually the Lyme

in me coming out. Not one doctor brought up Lyme. What state is ready for Lyme

and sickness brought on by a tick bite? Frustrating!

Better days ahead,

Kari

>

> From: Natasha Moiseyev <nmoiseyev@...>

> Subject: Re: [ ] Re:: difficulty breathing

>

> Date: Monday, October 25, 2010, 10:40 AM

>

> I keep telling my daughter that.  And she IS getting better, but with rampant

> symptoms for 5 years, she is now 15 months into treatment and definitely

better

> (no longer spends the days and nights alone in her dark room in bed moaning)

she

>

>

> wants to be better NOW.  Her little sister, also congenital, is bouncing back

> more quickly but this morning also woke up in pain.

>

> I wake up in the night with my heart racing, worrying about hem, what they

have

> due for school, how to push it through, how to make money for living. 

>

> I believe that the Lyme we have encountered is actually genetically engineered

> -- probably on Plum Island or the like.  Whoever created it should rot in

hell.

>

> Natasha

>

> ________________________________

> From: Pavone <pavone1@...>

>

> Sent: Mon, October 25, 2010 7:14:27 AM

> Subject: Re: [ ] Re:: difficulty breathing

>

>  

> Natasha,

> It was disappointing that they didn't even mention the " first " vaccine that

> caused such pain and suffering for so many. Still there is hope for a better

> future for all of us. The more progress gained through research the better.

>

> My heart goes out to you and your girls. Watching your child suffer is

> torture... I can't imagine how difficult it must be to deal with it all when

you

>

>

> yourself are sick. I'm so sorry your family is going through all of this.

>

> I have two sick also, my oldest and first to be treated is 7 months in

treatment

>

>

> now and doing amazingly well. He was unable to pick his head up off a pillow

> last spring and now he is back in school. My daughter has only just begun and

I

> know that it gets worse before it gets better. I'm just hanging in there right

> now as I watch her spiral downward, its scary, I keep looking to my sons

> progress for encouragement and hope for her. My first trip to a Lyme Ped. I

meet

>

>

> a woman who was there for a follow up with her son and she said " they do get

> better " and i hung onto that for a long time last spring and now I can say

that

> to you first hand, " they do get better " . Hang in there!

>

>

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