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)
EMAIL; [email protected]

I made a copy of your post and will call to relate my story but I am and adult...what may help is that I suspect I have been infected since birth. Yes there is a strong indication I received my initial infection of borelious burgdorferi spirochete by in utero infection...can I prove it??? probably not because my mom would not submit to a blood test before she died. What I will tell your case worker is that you are doing what needs to be done to save the life of your child..........at a very desperate time in his life...............the zman

Also, contact Dr. Harris at Igenex in Palo Alto, CA. His son had lyme decades ago, when lyme was even less understood. That son is now a Harvard trained LLMD. Dr. Harris is a marvelous supporter of the lyme community and may be able to offer ways of approaching this that we cannot.
http://www.igenex.com

Dear Mr. Mancusi,

I am writing to you today to support Sandy Mishky and her family in their request to receive treatment for chronic Borrelia burgdorferi (Lyme disease). I have worked with Lyme disease patients for the past 18 years and have responded to over 25,000 individuals in search of documented research information, and/or support. I have written over thirty medical articles concerning tick borne infections which have been published in various national and local publications and have presented educational programs for doctors and medical professionals, government officials, and the general public. I also have assisted support groups across the country and I am the founder of the organization, After The Bite, which is dedicated to assisting those who are suffering from the effects of Lyme and other tick borne diseases.

Lyme disease, as you know, is caused by spirochetal bacteria that are difficult to eradicate once they have spread through the tissues and various organs of the body. According to the Centers for Disease Control, Lyme disease can cause severe neurological damage, arthritis, cardiac problems and many other debilitating symptoms. Often, treatment with antibiotics does not kill all of the bacteria and repeated treatment is necessary. Many patients, in order to improve, function, and survive, have been forced to remain on continuous antibiotic treatment. If treatment is stopped before all of the bacteria have been killed, the patient will relapse. Some patients require open-ended treatment with combinations of various antibiotics to keep from deteriorating further. Without proper treatment, some patients have died.

In reviewing Sandy Mishky's case, I do not see anything that would indicate her families fight against Lyme disease is any different than the thousands of others who care for a child with multiple changing symptoms that become worse without antibiotic treatment. I am familiar with her physician and refer you to the thousands of parents who have had successful outcomes when their children have been able to follow this doctor's advice and treatment protocol. I have personally witnessed the recovery of many children who were ill for years and it is heart warning indeed. I have also had the pleasure to see the smiles on the faces of parents as their children return to a more active life. Yes, it is priceless.

There are over 20,000 published medical abstracts and articles documenting the variety of symptoms that may present in patients infected with tick borne diseases. Organizations, such as, the Centers for Disease Control, International Lyme and Associated Disease Society (ILADS), Lyme Disease Association, and the Lyme Disease Foundation agree Lyme and tick borne diseases are serious and complicated infections and they can become a disabling condition in need of prompt and proper treatment.

They also emphasis the fact that Lyme testing misses many infected patients and a negative test does not rule out Lyme disease. ILADS recently published guidelines (2004) that state the current testing procedures can miss up to 90 percent of the people who have Lyme disease.

Due to the overwhelming amount of documented resources available, I would advise anyone who considers denying antibiotic treatment to Lyme patients, first be aware of the growing number of legal cases being brought before the courts on behalf of patients who became severely disabled because of improper diagnosis and/or improper treatment. In a recent, highly publicized legal case in my own home state, a young child who was refused treatment for Lyme was awarded a judgment of over one million dollars as compensation for the damages caused by those in charge of his care.

I am attaching the following documents that support further treatment for patients with Lyme and tick borne diseases who may test negative, yet continue to have active symptoms. If, after reviewing these documents, you continue to have any questions as to the proper route to take regarding Sandy Mishky and her family, may I suggest contacting ILADS, the Lyme Disease Association, or myself for more detailed information.

Enclosed in this packet are the following documents:

It's Lyme Time You Knew- general overview of Lyme and tick borne infections, prevention, and symptoms. 4 pages: Updated 2004.

From Lyme Info:

Persistence File: These abstracts show that Lyme disease can persist or relapse despite antibiotic therapy. 12 pages. Last modified: September 2003

Symptoms: Lyme disease is a multi-systemic infection, affecting multiple parts of the body and causing extensive symptoms, as demonstrated by these abstracts. This file now includes a table of contents. 47 pages. Last modified: February 2004

Symptoms Supplement: Abstracts on additional topics related to Lyme disease, such as tick bites, co-infections, and the immune response to Lyme disease. 8 pages. December 2003

Seronegativity: These abstracts demonstrate that the tests for Lyme disease and other spirochetal infections can be falsely negative. 17 pages. Last modified: September 2003

Cystic Form of Bb: An Introduction: These abstracts shed light on how Borrelia burgdorferi (Bb) is able to survive antibiotic therapy, and on a primary mechanism underlying post-treatment clinical relapses. They document the ability of Bb to change from a spirochete-form to a "cystic" or coccoid form in response to adverse environmental conditions. The cystic forms can later regenerate spirochetes.

Again, if you have any questions, please feel free to contact me. I will do what I can to assist you in your research and provide any additional information required to assure Sandy and her family have the best care possible.

Sincerely,

-----------------------

cc Roseanne McPherson

You're an angel!

This is a very poweful package you are seding to help this woman in this horrendous situation.

I'd like to pull this up to see if support group leaders or patients (with caution if you are under scrutiny yourself) could write in support of this woman, who just wants to treat her son for Lyme.

Mo