LymeNet Flash: Teenager with Mistery Brain Disease

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Teenager with Mistery Brain Disease

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Author

Topic: Teenager with Mistery Brain Disease

BOEJR
LymeNet Contributor
Member # 1734

posted

Hi Folks

I just read this on another thread. It kills me to think that this kid could have lyme...

I sent an email to the writer, maybe with enough incouragement the family will consider it.

Here is the original post, with permission

http://www.mcall.com/news/local/all-a1_4jana.5803144jun03,0,4598917.story

> > Keeping a promise to Jana

http://www.mcall.com/news/local/all-b1_4jana-2.5884648jun06,0,2483365.story

> > A promise to Jana fulfilled.
> >
> > The family is from Bethlehem Twp, PA which is
> > outside Allentown, PA,
> > eastern PA. Between Phila and NYC.
> >
> > If you wish to email the writer Steve Esack, he will
> > forward your
> > email to the family. He replied to my email
> > yesterday
> > regarding the possibility of tick-borne disease, he
> > said I was the
> > second person to suggest tick disease.
> > I requested contact info to send the family medical
> > references, but
> > he cannot provide it.
> > If you wish to help and have medical references
> > which would apply to
> > Jana's illness, please send to Steve Esack.
> > [email protected]
> >

Kindly

Julia

[ 07. June 2007, 08:35 PM: Message edited by: BOEJR ]

--------------------
Please consult your LLMD before making any changes to your treatment regimen.

Posts: 641 | From NJ, USA | Registered: Oct 2001 | IP: Logged |

lymednva
Frequent Contributor (1K+ posts)
Member # 9098

posted

Heartbreaking! IMO it wouldn't hurt to look into a Lyme dx. What does she have to lose? And she has so much to regain!

--------------------
Lymednva

Posts: 2407 | From over the river and through the woods | Registered: Apr 2006 | IP: Logged |

djf2005
Frequent Contributor (1K+ posts)
Member # 11449

posted

id call. it cant hurt
i wonder if chiari is a possability too? [shake]

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007 | IP: Logged |

CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

posted

I was a real neuro mutt with many MS, ALS and Parkie symptoms. My Parkie type symptoms included-

tremors
chorea in left hand writhing kind
chorea major
got real real SLOW
micrography

I wrote the site- and the writer-
and posted this-
Lyme-Associated Parkinsonism:
A Neuropathologic Case Study

years back I spoke on the phone with a purely Parkie presenting woman who a doc in CA was treating who had walked for first time in 4 years when I spoke to her(*)!)(! But she knew a few Parkie presenting Lymies personally in her same town which shall remain nameless because her brave Lyme doc started treating people from the local Parkie support gorup who saw her improvement and wanted it!!!!!!!!!!!!

Never forget her. She was crying with joy-

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005 | IP: Logged |

BOEJR
LymeNet Contributor
Member # 1734

posted

Hi folks,

Thanks for sending letters. I sent some research articles as well and asked that they be sent to the family. Hopefully the letters will encourage the family to take her to a LLMD.

[hi]

Julia

--------------------
Please consult your LLMD before making any changes to your treatment regimen.

Posts: 641 | From NJ, USA | Registered: Oct 2001 | IP: Logged |

Boomerang
Frequent Contributor (1K+ posts)
Member # 7979

posted

Oh my gosh........that is just too, too sad. My heart goes out to that poor girl. May God Bless her.

Posts: 1366 | From Southeast | Registered: Sep 2005 | IP: Logged |

Geneal
Frequent Contributor (5K+ posts)
Member # 10375

posted

My heart and prayers go out to the family and this young lady.

I hope it ends up being Lyme.....

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006 | IP: Logged |

wrotek
LymeNet Contributor
Member # 5354

posted

Lou Gehrig(ALS patient, after whom disease was called) was a baseball player, just like the girl http://www.mcall.com/news/local/all-jana-pg,0,2087812.photogallery?index=2

Perhaps there are easy to catch ticks in baseball field grass, especially when You spend so much time there.

Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004 | IP: Logged |

BOEJR
LymeNet Contributor
Member # 1734

posted

Hi Wrotek,

Actually this is the same girl. Click on the links at the news site for more pictures.

I did write to the author. Hopefully he will forward the files I sent him on lyme to the family.

I also posted on the blog at the papers site. With a little luck and alot of prayer she may find what is wrong with her.

The truth is that we tend to look at everything and think that it has to be lyme. I know that not everyone will have lyme...

However it does intrigue me that she manifested early tremors and they have not been able to find a diagnosis for her symptoms. Sounds like lyme...

Thanks for your thoughts and prayers for this child.

kindly,

Julia

--------------------
Please consult your LLMD before making any changes to your treatment regimen.

Posts: 641 | From NJ, USA | Registered: Oct 2001 | IP: Logged |

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