I am the lady from NJ whose son is being prevented from Lyme treatment by DYFS (and whose Dr - considered the best in the world for Lyme kids'- is being shredded by DYFS)!

Well, my mildly autistic 9-year old, who looked almost normal 8 months ago, and was indeed almost cured and/or in remission from his chronic/congenital Lyme, is now regressing severely neurologically due to DYFS' involvement and incompetence (and wearing pullups due to bowel and bladder incontinence from the active infection in the brain). (But DYFS doesn't think it is a problem that a child, potty trained by age 4, now needs to walk around in pullups at 9 1/2 years of age, and at 90 pounds.)

Today, I got the impetus I needed. My son, who acts now like a 4 or 5 year old, tried to stuff his finger into the fan, while it was running. He had no idea that this was a problem! (Luckily, his finger didn't quite fit).

SO I CONTACTED: 1) The attorney General's office 2) The office of the Advocate for the Child 3) Channel 12 NJ news
4) Asbury Park Press in NJ 5) Trenton Times Newspaper in NJ
........ And my write-up for the Oprah show is almost complete.

If anyone wants to join me in commentary and/or an appearance on Channel 12 news in NJ, should that happen, contact me by email. (Probably best not to bother though if you have kids - I don't want you to end up like me).

THANKS SO MUCH TO ALL OF YOU WHO HAVE SENT LETTERS ABOUT CHRONIC LYME TREATMENT AND YOUR OWN PERSONAL SITUATIONS - to DYFS for me.

I will keep you posted.

Wish ALL OF US Luck.. This needs to stop.

WAY TO GO!

If you need anyone to help.. just let us know.

I will be happy to share my letter with any officials. The office of buttheads should have it by now.

AND.. nearly 100 pages of documentation too!

Don't let the tick win!

And don't let those ... whoops... nevermind....

Bad mouth Tincup...

im prayin for you...GOOD LUCK

Stories like this just upset me so.
I hope that the media give you fantastic coverage & show the ignorance of the DYFS.

Good for you! And great to have some strong advocates on your side.

IMHO, DYCF has just overreacted to the bad press they have gotten for neglect of their caseloads in the last few years.

Best of luck to you.

I'm way over here in OR where so few have heard that Lyme is an epidemic! Just finished 3 mo of I.M. and orals and you "would not" believe the raised eyebrows I get as I am embarking on my I.V. Tx plus orals. Oh theses ducks!

So I send a terrific rahhh rahhh to you. Can't imagine if my child were going through what yours is. My mothers heart goes out to you. I also soooo support your opening this up to Oprah!!! Word has got to get out! Let me know if you need an OR perspective or support... Anyone else live in OR???

Peace and Healing,
Rayne aka, lonely limie in OR.

Just came across this post. I had posted back to you under the congenital lyme topic.

I still haven't heard back from Oprah, but your story is so compelling I think you may grab their attention. I was telling one of my friends about contacting Oprah and about your situation and she said why didn't we try Montel. Her reasoning was that since he has MS and Lyme often mimics MS he might be more receptive. It's worth thinking about, 'tho I'd rather see Lyme get exposure through Oprah. If I can do anything to help, just holler. You have my e-mail address.

Thanks so much, and I look forward to receiving all your ideas.

quote:

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Originally posted by 1185:
Hi,

I'm way over here in OR where so few have heard that Lyme is an epidemic!
.. Anyone else live in OR???

Peace and Healing,
Rayne aka, lonely limie in OR.

---

Your not as lonely as you think!

Rayne, I dont think I have met you yet. I live in Bend. Our whole family has lyme, you probably read my daughters story in the Hillsboro Argus last year???

Your post struck a chord in my heart and brought tears to my eyes. Nothing tugs at my heartstrings more than an "invisibly" sick child and a broken-hearted Mother. I'm so sorry to hear you have to stand along the sidelines and watch while your son fades away. Aside from the love you have for your child, you've invested a lot of time and emotion trying to get him healthy. I can't think of a more heartbreaking scenario.

The good news is that you are his Mother. You know your son better than you know yourself. You love him more than life, you will continue to fight for him and you will win. You might not win this very minute, day, week, month or year. but you will win when all is said and done.

Your words and the posts you're leaving here? You've left a trail of love for other mothers to read when their turn comes. Will they read it in a day, a month or a year? I don't know, but they will read about your plight and be thankful someone helped pave the way for them.

We are accidental pioneers, and I have no doubt our words will be written in history books some day. We're unfortunate prisoners of a political war. There aren't any good things to say about war, but they don't last forever and I haven't read about a war that never ended. One side is always triumphant and the other side succumbs. Truth and honor will prevail over the enemy in this war as well.

My apologies for rambling on. My thoughts have been pent up for too long by this wicked disease. I do understand your plight. I wanted to encourage you to be strong, to keep fighting for your son, and to continue pushing forward. I'll keep you and your son in my thoughts and prayers. Keep biting back, it will a difference!

If you need anything I'm just an e-mail away.....
Keep us posted !

Bon

you know me, and we will be speaking again soon. i called to help you as your son is in worse shape then my children and instead, you offered me help.

awake all night and threw up all nite so not coherent. feeling pretty bad.

green darkness, biting back, and lish's mom and all others with lyme children ms dx with autism, i'm heartbroken when i read your stories. my children are not as sick as yours, but i know the horrors of this. i know it will have repercussions for generations to come.

and i sent my daughter to a small private school due to her undx lyme problems and one of several moms who i was confiding in was a pediatric infectious disease specialist of the eugine shapiro/allen steere side. i was too alzhiemers and deathly ill to realize she was even a dr. told of my grave health probems and abuse from drs and not getting med care, no help, but lots of animousity from her and the other moms - her friends. also, was confiding about my worries for my children who were getting worse. did not even suspect lyme. they were so mean.

after testing pos by LUAT, started opening my mouth about what happened to me, but am quiet by nature and they would shut me up. got 6 wks i.v., still gravely ill, blue cross blue shield cut me off and i.d. specialist who ordered i.v. dr G (who did Igenex LUAT)refered me to threw a fit and said i did not have lyme if i ever had it to begin with as i cried on the exam table unable to stand pain. everyone better after 6 wks treatment , pain was all in my head. went back to dr G and he could not help further.

in desperation, went to officials at small school where daughter went and lots of area drs and lawyers send their children, begging for help. also started opening my mouth to others at the school about this. said they would put thier heads together. did nothing. this was before i knew i had photos of me with bullseye rash unwittinly taken during vacations to nantucket island. pediatric i.d. specialtist had donated much money to school and had a "great" reputation there. immeadiatly after, someone reported me to social services.

was investigated, and right away it was determened parents are excellent parents, mom very sick with lyme and not getting treatment. the woman who investigated had an elderly mom in NJ who got lyme, got dx right away but still got very sick, then got extended i.v.'s and recovered.

after finding photo of me with bullsey and realizing what was causing my children symtoms, pulled my daughter from school and sent both to public school. son graduated from montessori preschool. got both to dr J and daughter made an excellent recovery after 9 months and no behavior problems by the time she transferred. son however, developed behavior problems after abx were started.

public school enamoured of my daughter, but had to visit school for my sons problems. huband mostly dealt with them due to my fragile physical/emotinal health. tried to tell school nurse how lyme affects children, but she was not interested, in fact hostile. my husband is working very hard, sick too, taking care of kids and me, and no computer at home. i was coming to library doing what research i could and lyme support, he did not know near as much about this as i do.

behavior problems seemed to have resolved, but now, at age nine, got much worse. husband was also somewhat in denial, we are both devasted by this and he wanted to beleive things were not as bad as they are. when problems escalated at school, he kept a lot from me as i am traumatized by this and still emotinally fragile as well as very sick. my husband is very protective. he dealt with school. pricipal and guidence conciler he likes a lot. did not take well to school nurse. she was hotile during his conference with them, but pricipal and couciler listened to him. few months after, social services pounding at my door. husband said i should not have even let thm in. they apparently had a phone no we haven't had for several yrs and were leaving messages and thought i was ignoring them.

he dealt with them. talked to a woman there by phone, told me she sounded very reasonable and was going to meet with us. came to our home, then husband ahd to take kids to sports practice and i continued to meet with her. showed her some of my records, lots of photos and she stayeda and listened for 3 hrs. shocked at what i showed her. my husband are of the opinion, that if they truely want to help, such as take kids to activities when i am too sick and he has to work late, we will surely accept help. if they are there to harrass, then its time for us to take legal action.

the following paragraph is supposed to come between the paragraph after un-dx with lyme and before the one where i told of going to private school officials in desparation. sorry i'm so incoherent and i know there are lots of mistakes, but i'm feeling too bad right now to type over. starting to see orange flashes in the air.

a yr later, neuro ( who was not aggressively treating, using me as research subject i later found out) did pcr of my spinal fluid , came back pos, and ordered more i.v.'s. b.c/b.s. would not turn me down in writing, but kept dragging it out for months claiming they needed more info despite 64 pages of my records adn 2 precert forms from neuro. finnally, my husband pleaded with a woman at bc/bs and she approved the i.v.'s and they agreed to i.v. treatment for at least 10 wks. after 7 1/2 weeks they changed their minds citing "studies" that it will not help further. we were stuck with 1 weeks bill for which we really could not afford and infusion co for the other week. infusion co later was paid. i send a letter to appeal, but bc/bs just ignored it.

the following paragraph is actually the first paragraph i wrote, i've been trying to correct as i go along. sorry i'm so confusing. feeling nausious and weak and not keeping water down.

my son has congenital lyme and recently worse, daughter thru brestmilk, but may have been born with it, husband and i appear to have had symptoms for many yrs. i have a severely autistic older brother ( i don't have legal custody and not able to convince others to test him) mom died of multiple myo (bone cancer - forget last part of what it is called). saw a post in medical recently and wanted to post to it. it is sometimes lyme mis dx , but dr G in basking ridge linked it posibly to lyme as 3 of her patients went on to get it and died. thought that is what i had when i was deathly ill as my symptoms and disease progression mimicked my mothers illness. posted here a couple of yrs ago about it after meeting a woman whose friend from north NJ was mis dx for it then found out it was lyme. someone posted that there was a woman here who also was dx as multiple myeloma but then found out it was lyme. yes, there is a connection.

So nice to see your post. Please keep your fingers crossed for me. The report that I hope to get from Dr. S is one of the main things I am counting on to perhaps help me.

Hope to bump into you again at Dr. office, and hope you start feeling better!

News stations and newspapers don't consider this a "viable or exciting" story until DYFS concludes their investigation at which time it is in writing by the Court that my son can not be treated for lyme. In other words, he has been denied abx for the last 8 months, and is continuing to worsen, but that is not "news" material until he has a "brain seizure" or something similar, and/or until the Court decision comes down, which could take another 4 months.

So the only avenue I think I have is someone like Oprah wanting to air a story like my son's. I don't know how long that would take or the liklihood. I just wanted to pass this on to you as you have been so supportive and responsive.

Keep hounding the media...Montel will listen before Oprah will......but if you can get Oprah, that would be awesome!

Biting Back....that was well said! You were NOT rambling!

I'm not on here much, but will try to keep up with the latest news on this.

Sandy.... You WILL WIN!

also, had another thought. when i was in high school, a principal lied about a student causing him to be expelled from school. we organized a walkout in protest. we contacted a local TV news station, and, at the desiganated time, almost all the students walked out of school (about 2 thousand of us) and we were filmed by the news crew. the student was reinstated. later, that pricipal was fired due to unrelated immoral behavior. creepy guy!