I was hoping you could make one more call for me?There is one more person that I (especially)/"We" as Lyme patients would benefit from if you would call. Her name is Diane Ryan. She is the case worker assembling/gathering info on my case from the Office of Edward Cotton, who is the Assistant Commissioner of Human Services/Director of DYFS for the entire state of NJ.

FOR ANY OF YOU WITH CHILDREN WHO HAVE AUTISTIC SYMPTOMS/ADHD ETC - WHICH IS MADE WORSE FROM LYME OR CAUSED FULLY BY LYME - PLEASE TELL HER THIS. DYFS WORKERS/DOCS ARE SAYING MY SON IS ONLY AUTISTIC - NO LYME. Please go into detail about the neuropsyhiatric and all other symptoms the Lyme causes these kids, the blackouts, seizures, and everything else.

If you have copies of the letters that you sent elsewhere, can you fax/email them to Diane Ryan (contact info below).

Although the governor's office receiving all the calls was great in that it "MADE SURE NJ GOVERNMENT RECOGNIZED "LYME" AND MY CASE IN PARTICULAR AS AN EMERGENCY" - Diane Ryan is the specific person right now pulling together everything on my case for the full investigation.

Can you please contact her with your stories about Lyme disease (length of treatment it takes, the entire variety of illnesses/problems it causes - the fact that you all know that the physicians I went to are really the best (Jones/Fallon/Bransfield), etc. That it doesn't always cure, can go away and come back, but antibiotics is the best thing out there right now, etcDYFS IS THE AGENCY THAT REMOVES KIDS - SO HOPEFULLY NOONE ELSES KIDS WILL BE REMOVED OR WILL POSSIBLE BE REMOVED FOR LYME TREATMENT - AND THE "IGNORANCE OF DOCTORS REFUSING TO ACCEPT LYME".

If Doc J from CT is also your childs Doc - can you please talk about him?

Noone has gone to Court yet this week - I believe that is FULLY DUE TO ALL OF YOU. I have been given the answer that "their attorney was on vacation this week". I don't think they know what to do with me at this time.

Thanks so much for everthing. I would certainly appreciate any good/bad or noteworthy comments or responses you receive.

I really think the next "Lyme Mom" in NJ will not go through this now - the way I have.

Sandy


Diane Ryan
ph: 609-292-4933
fax: 609-984-0507
email: [email protected] (you have to put "Sandy Mishky Lyme Case " in subject
line)

address:
Diane Ryan
Asst. Commissioner Ed Cotton's office
50 East State Street
7th Floor, CN717
Trenton, NJ 08625

Will be praying for a quick resolution to all this and a positive outcome!!

Diane Ryan and Asst. Commissioner Ed Cotton
50 East State Street
7th Floor, CN717
Trenton, NJ 08625

Dear Ms. Diane Ryan and Assistant Commissioner Ed Cotton,

Thank you and your staff for protecting the children in your care and for investigating
cases thoroughly and completely before making decisions. I am writing to you today to request that you seriously consider the following information regarding the Sandy
Mishky case and place this letter in her file.

`````````````````````````````````````````
To whom it may concern:

Not a day goes by that I don't see the direct effects Lyme disease has on children who were misdiagnosed and/or improperly treated for serious tick borne infections. Their stories are heartbreaking to say the least.

Unfortunately, these children are the victims (and the losers) in a political and scientific battle they did not start and are too young to understand. They are the ones who's little bodies and futures are being destroyed while this battle is fought in the scientific journals, in the courts, and on the streets.

Ms. Mishky's case is not unlike thousands of others we see on a daily basis. For example,
listed below are a few quotes from letters that have come across my desk just in the past few days.
`````````````````````````````````````````````
THE EFFECTS OF CHRONIC LYME -CHILD NOT TREATED IN TIME

We have a young girl (11) who has been fighting the "system" for several years now. I suggested to look into Lyme as she was similar to my daughter in presentation.
Her daughter since then has had a major stroke, and our state teaching hospital had the parents convinced it could not be Lyme disease. The daughter then had 72 hour seizure, leaving her left side paralyzed. Her mother asked me where to go, she had been unable to obtain tests. They left last week (from Oregon) to see Dr. Jones, who felt they should see a neurologist immediately who knows Lyme. They opted to stay a few days (while waiting for test results so treatment could be started. Before they could start treating... )
The girl went into cardiac arrest at her hotel.
`````````````````````````````````````````````

EFFECTS OF LYME ON A SCHOOL GIRL WHO WANTS HER LIFE BACK

I just started classes this week and I already have no idea how I'm going to make it. I just don't know how I'll manage it. I'm only taking three classes. (She is on IV Rocephin for chronic Lyme)

I guess taking the semester off is an option, but I don't like it. I'm also having new symptoms come up... My energy is so low that doing anything is a struggle and my
headaches are getting worse. Plus my appetite is horrible since starting the Rocephin (something that happened to me last time I was on it, too) so I'm basically not eating which I'm sure is making my energy lower and makes me dizzy and lightheaded.
I'm going to talk to my parents tonight or tomorrow about it and see what they think. I've talked to one of my teachers so far and she's very understanding about things but I'm not sure about the other two. I could talk to them but it might not make a difference if I really don't have the energy to do everything.
`````````````````````````````````````````````

A YOUNG BOY- NOTE THE STRESS ON THE ENTIRE FAMILY

Just wanted to give an update on the little guy. He's now on Rocephin (7th week)
and Zithromax. For the last week, JC's really been getting better
cognitively/emotionally.
JC started to herx/flare this week; generally miserable, freaking-out episodes,
crying and elevated temps (instead of usual 96). Carried the poor sweetie out, hot
and weepy, from new school orientation yesterday. Home health care nurse came
this a.m. to examine him, change dressing, check IV, draw labs, etc (THAT'S always
fun....lots of extra crying) Anyway, of course, his line is blocked. Try all the tricks.

More miserable crying. "It hurts!" Nurse calls, doc calls, hosp calls... GO TO
HOSPITAL NOW. . WEATHER- POWER FAILURE. BLACK OUT. NO WAY TO CONTACT.
NO CELL PHONE CONNECTION. Go to hospital in driving rainstorm.

JC SEES THE BUILDING, (Switch crying to screams and ramp that decibel level) Enter lobby to
sobbing "NO, MOMMY, NO! PLEEEEEZE!!!" Ignore stares, hug JC and pretend this is
normal (which it is, actually) They're expecting us, Check him out, Clot-city;
Scheduled for immediate de-clot/repair, general anesthesia, tomorrow a.m. But of
course I worry; what with JC's herxing, existential hospital terror, the general
anesthesia, clot and new stitches, etc.
``````````````````````````````````````

ANOTHER TRAGEDY DUE TO LYME DISEASE

Once again I am forced to wipe away the tears of pain and anger due to the untimely
death of our dear friend, James Sanders, who at age 55 succumbed to Lyme Disease.
How many more of us must die before the doctors and this community and our
politicians wake up to the seriousness of this illness?

Maybe 1 death per year isn't enough. Wasn't Ted Kotula enough? Now James Sanders? How many memorials must we attend and have in honor of people with this disease before the medical profession wakes up and helps us.

No, it's not fibromyalgia, no it's not MS, no it's not the flu, no it's not ALS, no it's not anemia, no it's not chronic fatigue, no it's not early arthritis, no it's not ADHD - IT IS LYME DISEASE and all of the coinfections that go along with it.
And it is an EPIDEMIC.

I call on every school official to get the facts to help the children of this
town, I call on every minister in this town to help the afflicted, most of whom don't know where to turn, I call on every parent to check their kids every day for ticks. I call on the doctors once again to step up to the plate and learn about this complex disease which is now killing people.
`````````````````````````````````````````````

It appears there is some controversy concerning the fact the Mishky child may or may not have Lyme disease at this point. This topic seems to be one of the more common
``excuses'' used by those who are not educated about Lyme disease (physicians, insurance
companies, etc) to deny treatment to patients.

I refer you to the medical abstract (attached below), prepared by experts from the United States Army in Aberdeen, MD (2003), and to the document prepared by the Center for Disease Control (CDC).

The abstract documents a recently discovered infection that has symptoms identical to
Lyme, is caused by the same kind of bacteria (spirochete), can produce a rash identical to
Lyme, and is treated with the same protocols used in Lyme.

This newly identified disease was documented in the medical literature several years ago.
It was originally named STARI (Southern Tick Associated Rash Illness) and it has
recently been found in ticks and/or humans in and around New Jersey and other states.

The problem is- it won't show up on the current Lyme disease blood tests. The tests
available were not developed to detect this newly identified strain.

For those physicians who, in the past, mistakenly required a positive blood test before treating a patient for Lyme disease, which, according to the CDC, is suppose to be a ``clinical diagnosis'' and not dependent on blood tests, they missed the boat and have put many lives in danger.

Anyone who continues to insist a person must have a positive blood test before being
treated for Lyme disease is acting criminally negligent at this point. The documentation is out there, is free, and is readily available to those who bother to look.

The current Lyme testing protocol has already been proven to miss up to 90 percent of those with Borellia burgdorpher (ILADS). There is also proof of Borellia strains being
found in ticks and humans which are not able to be detected on our current tests for Lyme
disease.

The combination of facts above substantiate the fact that it is literally
impossible to rule out Lyme disease as the source of the Mishky's child's problems.
I also remind those involved in this case that there is NO test developed that can prove Lyme disease has been cured and no treatment protocol that has been found to be
effective in every single patient. In addition, a preponderance of the medical evidence indicates active ongoing infection is the source of ongoing Lyme disease symptoms.

``The spirochetes responsible for Lyme disease (over 300 known strains) have been detected in breast milk,
the uterus, semen, urine, blood, umbilical cords, the cervix, tears, brain tissue, and other body fluids/tissues.

Humans may contract a variety of viruses, bacteria, or parasites in addition to Lyme. Babesiosis, Leptospirosis, Ehrlichiosis, Tularemia, Mycoplasmas, Parvo viruses, and Bartonelliosis (cat scratch fever,
trench fever) are increasingly being found in people who are also infected with Lyme disease.

If not diagnosed and treated properly in its early stages, Lyme disease can result in serious, chronic complications. Lyme disease spirochetes can disseminate from the site of the tick bite by cutaneous,
lymphatic and blood borne routes. According to the CDC, early disseminated infection may appear as a disease of the nervous system, the musculoskeletal system, or the heart.

Early neurologic manifestations
include lymphocytic meningitis, cranial neuropathy (especially facial nerve palsy), and radiculoneuritis.

Musculoskeletal manifestations may include migratory joint and muscle pains with or without objective signs of joint swelling.

Cardiac manifestations, myocarditis and transient atrioventricular blocks of varying degree have been reported.

Lyme infection in the untreated or inadequately treated patient may progress to late disseminated disease weeks, months, or years after infection. The symptoms can include intermittent swelling and pain of one or a few joints, chronic polyneuropathy, encephalopathy, cognitive disorders, sleep disturbance, fatigue, and
personality changes.

The CDC reports Lyme disease may be severe, chronic, and disabling. Deaths from
complications of Lyme and other tick borne infections have been documented and are increasing in
numbers.'' (MD Tick Borne Disease Report, ATB, 2003)

Therefore, the only sensible and humane option is to have a knowledgeable physician
treat the child for ongoing infection. Ms. Mishky's physician is without a doubt the most knowledgeable doctor and most qualified doctor currently treating chronic Lyme and
coinfections in children. Any child lucky enough to be under his care has the best chance for improvement. This has been proven time and time again.

Ms. Mishky should be praised for seeking out the best care possible for her child, not threatened. She should be supported in her efforts, not stressed by these actions.

If you require any further information or documentation, I will gladly assist you in
anyway I can. I know we have the same goals in mind and we will both do our best to
work together for the health and welfare of our most precious natural resource, the
children.

Sincerely,

PS. I am also forwarding a letter to you that was sent to Mr. Peter Mancusi and Ms.
Roseanne McPherson dated July 26, 2004, regarding the Sandy Mishky case. Thank you
for your consideration and assistance.

Abstract documenting STARI in ticks found in NJ-
J Clin Microbiol. 2003 Dec;41(12):5557-62.

Evidence of Borrelia lonestari DNA in Amblyomma americanum
(Acari: Ixodidae) removed from humans.

Stromdahl EY, Williamson PC, Kollars TM Jr, Evans SR, Barry RK, Vince MA,
Dobbs NA.

Entomological Sciences Program, U.S. Army Center for Health Promotion and
Preventive Medicine, Aberdeen Proving Ground, Maryland 21010-5403, USA.
[email protected]

We used a nested PCR with Borrelia flagellin gene (flaB) primers and DNA
sequencing to determine if Borrelia lonestari was present in Amblyomma
americanum ticks removed from military personnel and sent to the Tick-Borne
Disease Laboratory of the U.S. Army Center for Health Promotion and Preventive
Medicine. In our preliminary investigation, we detected Borrelia sequences in 19 of
510 A. americanum adults and nymphs from Ft. A. P. Hill, Va. During the 2001 tick
season, the flaB primers were used to test all A. americanum samples as they were
received, and 29 of 2,358 A. americanum samples tested individually or in small
pools were positive. PCRs with 2,146 A. americanum samples in 2002 yielded 26
more Borrelia-positive samples. The positive ticks in 2001 and 2002 were from
Arkansas, Delaware, Kansas, Kentucky, Maryland, New Jersey, North Carolina,
Tennessee, and Virginia. The last positive sample of the 2001 season was a pool of
larvae. To further investigate larval infection, we collected and tested questing A.
americanum larvae from Aberdeen Proving Ground, Md.; 4 of 33 pools (40 larvae per
pool) were positive. Infection of unfed larvae provides evidence of the maintenance
of B. lonestari by means of transovarial transmission. Sequence analysis revealed that
the amplicons were identical to sequences of the B. lonestari flaB gene in GenBank.
Despite the low prevalence of infection, the risk of B. lonestari transmission may be
magnified because A. americanum is often abundant and aggressive, and many tick
bite victims receive multiple bites.

PMID: 14662940 [PubMed - indexed for MEDLINE]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

CDC information on STARI- http://www.cdc.gov/ncidod/dvbid/stari/
Epidemiology and Risk: In 2001, a patient with evidence of B. lonestari infection was reported
in the medial literature. This patient had exposure to ticks in Maryland and North Carolina and
developed a rash indistinguishable from erythema migrans after an tick bite. DNA analysis
indicated the presence of B. lonestari in a skin biopsy taken at the leading edge of the rash and
in the tick removed by the physician. Serologic testing for was negative. The patient was treated
with an oral antibiotic and returned to normal health.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I am much better writing things down as an email than speaking in person, if you know what I mean.

Actually, I sent two. I sent a letter and I followed up that email with another one with links she can read about Lyme if she is interested. I sure hope she is.

Mine was more like a heart to heart talk. I think it's good that there is no duplication of info our letters.
The following is my e-mail to her:

Dear Ms Ryan,

Words can not fully convey my concern about Sandy Mishky's son and all they have endured. This mother has done everything in her power to get the very best medical care for her sick child. She has taken him to Dr Jones, Dr Fallon, & Dr Bransfield - the best of the Lyme experts for her son's case.

Dr Charles Jones is the best Lyme Pediatrician in the nation. He has treated over 6,000 children with some cases almost in the miracle category. One example is a child with congenital Lyme who was labeled "mentally retarded". After Dr Jones treated him for Lyme, he was tested again and they found his IQ was 170 - a very talented and gifted child. Without proper treatment, this child's life would have been wasted because someone did not recognize Lyme disease.

My 12 year old grandson here in South Carolina has had Lyme for 5 years. Since he was not treated adequately early in the disease, it progressed to Lyme Encephalitis - inflammation of the brain, which has affected him like Attention Deficit Disorder.
Response to treatment was minimal. Since we needed the best Lyme Doctor we could find, he is now being treated by Dr Jones in New Haven, CT. Since neurological problems are very difficult to treat, it may take as long as five years to control the disease. We are blessed to have an accurate diagnosis and have Dr Jones in charge of his care.

I assure you, we would not spend the amount of money it takes traveling from South Carolina to Connecticut if we weren't sure of Dr Jones' ability. He is not only knowledgeable about Pediatric Lyme, he is such a wonderful, caring person.

Dr Fallon and Dr Bransfield are also among the real experts for Lyme Disease. Their work has been outstanding. I was privileged to meet Dr Fallon when he came to Columbia to make a presentation at a Lyme Seminar. I consider him one of the best of the best Lyme experts!!

I am with the Lyme Disease Network of South Carolina.
One Lyme patient who moved to our state called our HotLine. She was appalled at her doctors' misconceptions and lack of knowledge concerning Lyme disease.
A doctor in her small town said they had a little four year old girl who was very sick and they couldn't diagnose the problem. She got worse, was put in the hospital, tested for "everything imaginable" but the child died. When they did an autopsy, they found she had Lyme Disease. So sad that this poor little girl died from her doctor's ignorance of Lyme and her lack of treatment for such a serious medical condition.

My father was misdiagnosed with Alzheimer's. A wonderful Lyme expert in New Jersey diagnosed Lyme and Dad was treated for 12 days in the Perth Amboy Hospital before we came home. Unfortunately, it was so late in the disease and there were numerous complications, so we had to stop treatment. He died of Lyme complications a couple years later. It is terrible to watch a loved one die from a treatable illness!!

I've been fortunate to find the help I needed for my Lyme disease and co-infections, Babesiosis and Bartonella. I hope I live long enough to see all the Lyme disease patients of America get the care they need for such a devastating illness.

Please do all you can to help Sandy Mishky get the medical care her son so desperately needs. His situation is critical, and without antibiotic treatment, he will continue his downward spiral.

I know it's an awesome responsibility to have this child's life in your hands, but if you check the credentials of the Lyme Doctors who have seen him, I'm sure that you'll see that his mother made excellent decisions about his health.

Hopefully, a decision can be made right away. This poor little boy is seriously ill and needs to resume treatment under the care of Dr Charles Ray Jones - ASAP.

Thank you for your attention.

Most sincerely,

I am going to sleep tonight without all the fear/racing heart - that I have had for so long - but especially the last 8 days (when told they were going to Court to remove my kids).

I have been told by Peter Mancusi that he is "looking forward to working together with me to continue to find out what is best for Emery?????".

I have not brought the words to my lips "Are you still taking me to Court to remove my kids? It just seemed to unreal.......

I can't imagine that I will hear the words "The division is taking you to Court to take custody away from you again". But I know I have learned that there is no way you can relax when under this type of scruitiny from an agency.

I know there have been 3 different people from the governors office taking calls - and 3 different people from the Asst. Commissioner's office taking calls.

LET ME TELL ALL OF YOU ONE THING - I HAVE SOME REAL GOODIES STORED AWAY HERE. The absolutely incredible letters all of you have sent in - are ready and waiting here to help the next person in need. In fact, I am thinking of forwarding them to Pat Smith from LDA to ensure they are available for the next one of you in need.

I "think" I am out of the woods in terms of not losting my kids. The investigationi is obvioiusly still open. I don't know what will happen about my desire for continued antibiotic/Lyme treatment. WHAT I DO KNOW IS THAT THIS AGENCY THAT ALL OF YOU (and others) so thoroughly saturated - appears to be really 1) taking a look at Lyme and 2) taking a look how they handled a person (me) who did absolutely everything they asked, including no abx, and still was "wrong".

Want a laugh. A very religious group - without about 6,000 members - was included in this fight to help me. They were only given governors office phone number. I have never wished so much in my entire life that I was a fly on the wall - but I can tell you one thing - it must have been quite a week in Trenton, NJ - for employees of "these" two offices.

I can't thank all of you enough. I really feel like I have a chance now.

Sorry for delay in getting back to you; we've been MIA the last couple days. JC has been in hospital and recovering.

He's VERY tired but better!

Anyway, I was able to contact D. Ryan's office by phone late yesterday afternoon.

They are interested in talking to me; similar symptoms, etc. They are calling me back re: same.

Just wanted to let you know.

I'm so glad to see things seem to be turning a corner! What an ordeal you've been through!

I'll stay posted.

love,
andie

I'm so glad you can feel some relief right now..

but I won't feel you are totally out of the woods until DYFUS is out of your life, out of control of Emery's medical care..and perhaps even you know who is cited and brought to pay for initiaating this and torturing you this way in the first place.

Please don't spend any energy trying to help others until you have freedom from this.

I don't trust DYFUS as far as I can theow them..and IMO, you should continue to gather strength and information for your case.

They have wronged YOU and caused your son to regress terribly.

Your care to provide help for others that run into this is really amazing when you are in such a situation right now..but I am suggesting that you check with the writers, if you are going to forward to the LDA..and be sure they are willing to offer a standing letter.

This because those with children in long term treatment are always at risk of something like this happening to them, and if it does, contacting other state agencies at that time they themselves are in trouble is a risk to them.

I'm sure many of the letters are from peeople who don't have to worry about that..just the ones with ill children probably do.

Blessings, and I wish for you that things get better and better every day and in every way.

Your wonderful Mom..

Mo

I'll see what I can do ... tough act to follow!

here's the link to one of Sandy's first posts....still couldn't find the original.
http://flash.lymenet.org/ubb/Forum3/HTML/010673.html

I haven't done any posts because I am trying to remain calm - but can't.

Because of 500 to possibly 1000 calls that went in to the governors office - DYFS has informed me that "for now" - they are not going in to Court to remove my kids. So
great news as a result of a lot of pressure.

But I feel like I am drowning and can't come up from this. My son still can't have his antibiotics. And I am not allowed to take my son to his "new" pediatrician (they made me pick a "new" one) for diarrhea - without DYFS calling and "privately speaking to the physician to tell her "privately" why "they" are involved in my life.

It has been over a year everyone. I can't handle this anymore. They are going to break me. I am afraid to speak up about how they are harassing me. They are trying to destroy me - and I don't know how to handle this anymore - not to mention "I" have Lyme disease - and haven't treated it for 8 months now because they are pulling all my records.

And of course - I can agree with them on this - if "I" think I have Lyme as well as my son - well then I must be nuts! I mean, it would be a one in a million chance that both mother and son had chronic Lyme, wouldnt it?

I need to take a big breath I guess and be glad I have my kids for now.

one step at a time i guess.

please let us know of anything else we can do....

hugs and prayers

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

Clearly..they are causing harm to you and your son. CLEARLY, it has gone on too long.

Just some advise to think about, I'm not an attorney..

Can you take this time now that you have a little breather and really find an attorney or State agency who can turn the tables on this?

You have to keep moving in this, Sandy..
Because DYFUS is harming your child by blocking treatment,

and because you never know when they will come up with something else. They could even use your "standing still" for even a minute against you later..and say you didn't have his best interests at heart because you "allowed" him to go untreated..(I know this is entirely untrue, but that's the kind of thing they would pull)

You also must think about how Emery can get worse. God forbid he goes into a complete crisis state medically, and you will have no options, "they" can make it so he ends up in the wrong hands.

I would think about writing a letter to them yourself calmly and clearly stating that you have complied with them, but you cannot allow them to stand in the way of your son's care any longer..asking them to please release the case and allow you to get your son the medical care he needs..ect. Have someone help you write it, site medical articles again, attatch documents..bibliographies on persistant infection, everything.

Make it a clear, concise appeal, giving them one opportunity to do the right thing, and just laying the absolute truth of the situation out in a letter from you, with the undertone of "enough is enough", which is obvious in just telling this straight. This is one way you can advocate for Emery.

cc every professional who has helped you, send them a copy of your letter.

Then, also, after you contact them in a clear, rational way, I would also think about this..

Can you bring a civil suit? I mean..don't say a word to them about it, but talk to anybody from advocacy standpoint who will listen.

Seems to me, under the context of this being YOU and EMERY who have ben abused..DYFUS and the others who started this would be
"caught with their pants down" on this!!

At the VERY least (and I think you should consider doing more, but..maybe later..don't know what you are up fot right now, you must be exhausted)...but at the very least I would think that you can get some kind advocacy , or have some right to push back at this point in saying they cannot hold you hostage any longer..

Either they charge you NOW, or they let this go, and allow you to treat your son, who needs medical attention asap.

They have been made aware by you and Doctor's reports that Emery has a serious Medical condition. They cannot stand in the way of his treatment with that knowledge.

Sandy..don't mention this to anyone..just keep looking for help from thoe who can help until you find it.

Mo

PS: Many families have multiple members with TBD's.