I hope its ok that I post this here...--- In [email protected], ellenlu@w... wrote:
Sandy Mishky asked that I disseminate the following letter:
Hi,
My name is Sandy Mishky. I live in Highland Park, NJ. I am 43 years old and have had Lyme Disease for about 30 years, growing up in the Jackson NJ area. My son (9) was born with Lyme's disease. After being reinfected with another tick at age 2, he really got sick and developed severe neurological/psychological problems, in addition to all the other terrible symptoms you get with chronic Lyme.
He has been treated for almost 5 years with oral antibiotics, and has gotten continuously better (although very slow).
A bitter member of my ex-husband's family contacted the Division of Youth and Family Services last September, accused me of "Munchausen by proxy" (a disease where you poison/purposely make your child sick to gain attention) and are trying
to get DYFS to rule that my son can no longer receive antibiotics and/or
receive any treatment for Lyme's disease. The investigation is still on-going.
My son has not had antibiotics for 6 months, and he is deteriorating behaviorally, neurologically, etc - at a very rapid
pace, as well as not sleeping well, having problems at school, etc. He has in fact as of 4 months ago lost all contol of his bladder and bowels due to the neurological regression caused from Lyme, and its affect on the central brain mechanism. If I do not "win" with DYFS, my son may not be allowed to be put back on antibiotics.
And the more I continue to prove the "Lyme's situation" - I realize I am putting myself in jeopardy, because a number of children have been removed from their mothers in the last couple of years for treating their children for chronic Lyme (these mothers were said to have this "Munchausen by proxy").
My son's Dr. for the last few years is considered to be the world's best
physician for treating chronic Lyme disease - practically a household name to most mothers with children who have congenital or chronic Lyme disease.
The physicians DYFS are sending me too say there is no such thing as chronic Lyme, they are ridiculing me, saying my son's Lyme's
physicians are "quacks", etc.
If anyone reading this could please support me by writing as much or as little as you have time to write, to DYFS, in regards to your story as it relates to chronic Lyme, congenital Lyme, symptoms you or your
child have, problems finding a local physician to treat you, a description
of you or your child's symptoms (especially neurologic/psychiatric symptoms
in your child(ren), any stories regards to how you have been mistreated
by other physicians who are non-believers, etc.
I am desperate. I have just been blocked from doing a spinal tap which could prove my son has the active Lyme infection. My son is
deteriorating rapidly. I have excellent reports that have been written by two physicians from the East Coast who are considered to be the most knowledgeable in regards to children with chronic Lyme and
how it relates to/causes neuropsychiatric disorders. But it is still not
enough yet.
This branch of DYFS "originally appeared" to be trying to have an open mind after I have educated them on the "politics of Lyme" but every outside physician they send me to for an evaluation completely
denies the whole "Lyme story".
And now all of those physicians they are sending me to, with no knowledge of chronic Lyme, are saying my son should not have any diagnostic tests (such as the spinal tap) which may in fact prove the existence of Lyme and/or Babesiosis. My son was
blocked today from getting the spinal tap.
The address information is as follows:
Peter Mancusi
District Office Manger, DYFS
928 Livingston Avenue
North Brunswick, NJ 08902
(Please also send your letters to Roseanne McPherson from DYFS also.)
If you really fell adventureous, call Peter Mancusi at DYFS (732-418-3401, ext. 3414) and tell him over the phone about your
story. He will get the message if enough people call and write.
If you can possibly email me what you send, I would be so appreciative. I don't have much time, so thanks in advance for
anything you can do quickly.
Lastly, if you have any ideas or connections as to how I can "win" this
thing - I can use your help, if you have dealt with this situation before.
Sincerely, Sandy Mishky 732-762-1100