I've had lyme for 21 years and I remember the tick bite on the top of my foot. I was diagnosed and had my first western blot last month (July, 2004). Yes, I asked for a WB long before last year. Docs continually missed the diagnosis. My son and I go/went to a large, well-known facility. A neurologist got angry with me and told me I didn't have symptoms consistent with lyme. I saw this neuro 12 days before my diagnosis and I did file a complaint against him with the board of medical examiners.

My husband and I took our 7-year-old son to see Dr. C. in Springfield. He is one fabulous doctor.

Our son obviously has congenital lyme disease (borreliosis). He'll be 8 years old early next month, and he has carried numerous (same) psychiatric diagnoses through the years. The most heartbreaking diagnosis was Asperger's syndrome, a form of autism. Antibiotics were initiated on August 19, 2004. Two days later I met my beautiful son for the very first time. He is everything I dreamed he would be. Our son is not autistic, he does not have a pervasive developmental disorder, central sleep apnea, ADHD, depression, ``growing pains,'' behavioral problems, or an anxiety disorder. He has potentially reversible manifestations of lyme disease.

I should note that my son has always had perfectly lucid hours and days, interspersed with pain, confusion and fatigue. His IQ is high-normal and his teachers did not note any autistic behaviors last year.

Through the years, I have continually reported to my son's doctors that he vomits, has rib pain, visual disturbances, light sensitivity (he says the sun goes through his eyes and straight to his brain); he has migraine headaches, chronic pain, he's dizzy, light-headed, sleeps 13-14 hrs. per night and takes naps whenever he can. I went so far as to describe the worms we both have. Yes, I mean that literally.

He's battled odd eye infections from birth on. He has strabismus bad enough to warrant possible surgery on his eye muscles in the future. I just listened, but we have no plans for surgery. He has worn eyeglasses since he was 3 years old, but he should have had them much sooner. We took him to the eye doctor again two months ago as his eyesight was deteriorating once again. His eye Dr. (same facility as his neuro/pediatrician, etc) said he has bumps on his eyes, most likely due to allergies. I asked him if the bumps could be attributed to lyme disease, and offered my own (self- pre-) diagnosis. He said no, he didn't think they were from lyme (but offered he'd never seen it before). The eye doc prescribed bifocals again and he's been in and out of bifocals / single vision more than once.

For the past year, I've expressed concern about a 10 pound weight loss. His physicians did not take me seriously, nor did they check complete records for the weight loss until one week before we left to see Dr. C. We attended this rather impromptu appointment only because my son needed a prescription refill for one of the psychiatric medications they prescribed that he's taken for years. At that last appointment, his doctors finally pulled complete records and then acted as if they had discovered the weight loss themselves, and we hadn't been reporting it to them for a year. We were approached in a guarded manner, as if we were the cause of his weight loss. We were walking on eggshells at this appointment, fearing CPS and trying to get him to Springfield for help.

My son's physicians have prescribed nothing but psychiatric drugs for a number of years. They continually try to increase his dosage. He needs the anticonvulsant for now, but I don't think he will in the future. His prescriptions are:
Depakote
Ritalin for ADHD
Tenex (Relatively new, sometimes used for ADHD and/or conduct disorder. His doctor told me he prescribed it to help him sleep.)
Antidepressant (relatively new)

I recently discovered that my son's doctors have been pointing the finger at me. I always felt like I was under their magnifying glass, but after reading his medical records more carefully, I have no doubt. They silently and secretly blame me for my son's ``reported'' health problems. They did not take anything I reported to them seriously, nor did they investigate. When we took him to Springfield he was not eating. He was unable to drink more than a glass of fluid per day and he was dehydrated. We had to stop the car so he could vomit. He had episodes of pounding headaches and rage. He had moments when he didn't recognize even his Mom and Dad. He told us he was going crazy.

His medical records are riddled with notations of: "Mom had a typewritten list of symptoms that she shared with us; . . . his Mother's history of a 20-year, ill-defined autoimmune disease; . . . poor primary support (me, because I report pain and all other symptoms)."

. . . He also appears weak to his mother, sometimes dragging his leg . . . Primarily during the headaches, he complains of what appears like photophobia . . . during the headaches, he also complains of various aches, primarily chest ache (we tell them he has rib pain, and he asks everyone not to pick him up because it hurts). At the same time he also feels dizzy and lies down. Very often he looks tired and takes 1 or 2 naps.

REVIEW/SYSTEMS: Mother reports that *** has times when he is drinking excessively and urinating a lot. These have been primarily observed at school and not much at home. Otherwise, he does not have any respiratory, cardiovascular, or GI symptoms (I reported symptoms at home) . . .

PLAN: Mother was not given any prescriptions today.''

Indeed, the doctor handed the prescription to my husband.

Also documented is his doctor's goal "to prevent suicide in the future."

I'm very happy we both have an accurate diagnosis and my son is responding to antibiotics. But . . . there's always a but, isn't there? I'm NOT going to accept the diagnosis, be thankful, then go crawl under a log and act like I'm okay with it. I'm not okay with an 8 year delay in diagnosis for my son, or a 21 year delay for me. I realize some with permanent damage may take the delayed diagnosis baton, run with it and never look back. I love my son with all of my heart, I am a mover and a shaker and nothing will prevent me from litigating.

The problem is, who could put a price on what physicians have put the two of us through?

And ``experts'' report lyme disease is overdiagnosed?

What a heart breaking story you share.

I just wanna hug you both to pieces.. but I know it would hurt! OUCH!!! Been there!!!

While the situation is fresh.. you DO want to act.

Go for it!

This is an example of the worst of the worst.

Not acting now may legally be a problem because of the statute of limitations... so do not delay... ok?

I am NOT a lawyer.. or a doctor.. but I would so follow through with this.. it ain't even funny!!!

My first thought would be write this story in more detail.. not MUCH more.. just a few details.. and share it with any laywer you can find that will listen. You write very well by the way.. and you touched MY heart.

I was going to say to go to the newspaper.. but don't. FIRST get an attorney who agrees to help.

From what I learned about attorneys and cases...

The better case may involve the child at this point? You may want to start there.. but do NOT let YOUR possible case get old and lose a chance to act either.

You must prove there has been damages.

But again.. don't listen to me.. find a lawyer to assist you. I am afraid if you go to the press right now it might compromise the situation.

You might start.. casually.. collecting all of the medical records from ALL of the doctors he has seen in the past... as well as your own.

I would NOT mention you are considering litigation... just kindly ask for the records.

This will be the first step that needs to be done once a lawyer is secured for the case... and you may need the records to find a lawyer to take the case.

Of course the lawyer can get the records.. but then there starts a process that may find records destroyed or altered before they are given over to the attorney.

How to put a price on this?

Again.. I don't know. NO amount would make ME happy....

In MY opinion... they all stink at their jobs and should NOT be allowed to do more damage to others... and the damage done could never be repayed in full with pieces of paper.

But.. you might consider all your past expenses..

And future earnings..

And pain and suffering..

And future medical costs.. etc.

I again, don't know.. just thinking out loud.

If I can help by providing your attorney with any abstracts or documents that will help the case.. please contact me.

I will be happy to do all I can to be sure you have everything you need during this effort.

I hope you both are feeling better soon.

Please let us know how it goes.

I was reading your story in UTTER AMAZEMENT!!!!

I am going to print this one out for future use to maybe help others.

I am so happy you are seeing the great Dr. C. As my family (mom, and my two girls) is going to see him next Tuesday. My mom has been seeing him for the last 2 yrs.

In the elemental steps, you must prove

1.) they caused you damage ( heres the glitch)and but for their fault of whatever, you wouldnt have this injury, illness, etc.
2.) you have actual damages
3.) another element that comes into play alot is the question stage "would a doctor, any doctor, of the same degree as doctor ** have diagnosed, not diagnosed, or done exactly as doctor **. If yes, no case.

ALL elements must be met, they are state variant, but mainly under the same rule.

Missing a diagnosis isnt enough sometimes, but them causing the injury is. Shoot for acute lyme vs. chronic lyme and nail them to the wall.

Its all case dependant, also.

I too, would like to give you and you little guy a hug! So please accept a cyber hug that won't hurt! (smile).

I am in total agreement with Tincup! And for emphasis just add my agreement here!

1- Do NOT tip anyone off that you are even THINKING litigation!

2- Get his medical records ASAP and be very calm and casual about it... even if you have to have them transferred to your new doc make sure you get ALL records before they are destroyed or altered as TC said.

3-DO NOT go to the press with this because it will possibly effect your case or jury selection if it goes to trial.

4-I agree with TheCrimeofLyme that I would shoot for acute rather than chronic lyme!

5- Don't "tangle" with these guys! As tempting as it is to give them a piece of your mind... don't go there...be cool and be VERY calm. You already know that they are trying to discredit you so don't even go there. You are on an information gathering mission now and there is no need to even be in their presence!

On the brighter side I was thrilled to read:

"Antibiotics were initiated on August 19, 2004. Two days later I met my beautiful son for the very first time. He is everything I dreamed he would be. Our son is not autistic..."

CONGRATULATIONS ON GETTING YOUR SON BACK!!!

What a road you have travelled!!!

We can only imagine...

Please seek legal assistance ASAP... I think you have a case!

Get your new doc to document carefully his initial visit! BEFORE treatment!

Love and Peace to you and your son and family!

Magdalena

I can't believe what you have been through. I can't offer legal expertise but definately can give my heartfelt condolences and hugs for your ordeal. I am so sorry for you and your little boy.

As the previous posts have mentioned, I would also recommend being very stealth and flying low under the radar while getting all my "ducks" in a row. Your situation is so over the top it has legal possibilities written all over it. Shine them on while you're getting all your info because hey, isn't that what they've been doing to you for 8 to 20 years?

I often wonder how those who are so arrogant and callous sleep at night in face of their own shameful actions while the truly innocent toss and turn in suffering and despair.

Like you, our 6 yr. old son was just recently diagnosed after a protracted period of misdiagnoses (adhd, autism,learning disabled, degenerative brain disease) and being patronized and dismissed by the med establishment.

Your comment that, just following starting antibiotics, you "met your son for the 1st time" gave me goosebumps because that is exactly what my dh and I experienced with our son!! We were stunned, thrilled and bewildered as he chattered away because we kept thinking..."we've never met you but think you are absolutely delightful!" (Unfortunately, that short phase passed but it gives us a horizon to keep in sight).

Your story has so many twists, dips and turns I can hardly imagine how you, with the disease yourself, have remained not just vertical but valient in the face of it all. Sometimes she "stoops to conquer".

peace and prayers,
andie

Search some of the posts I have had over the last 3 weeks, and then also feel free to contact me. BUT I HIGHLY RECOMMEND THAT YOU DON'T EVEN CONSIDER TRYING TO SUE OR PURSUE ANYTHING "LEGALLY" IN TERMS OF YOUR SON'S MIS-DIAGNOSIS. Not until your son is much, much better. In fact, I will tell you that you should lay very, very low. Or you may end up considering moving out of state like I am now looking in to.

I can tell you that if I successfully get on the Oprah Show, or Montel Williams, or even a stinking news program, I will be calling you to join me!

But "do" call me - because I will be trying very hard to convince you "not" to pursue anything legally because I want your son to get better first.

First, let me tell you who I am. I have Lyme for about 35 years. My 9 year old son, and 7 year old daughter were both born with congenital Lyme. My son was diagnosed with his congenital Lyme at age 3, and because of two additional tick infections, his Lyme got a lot worse. He has been treated by Dr. J in CT for last 4 1/2 years, and my previously diagnosed autistic son, by January of this year, looked almost like a completely normal boy (my son we believe may actually be slightly autistic, but only slightly).

Where are we now? The Division of Youth & Family Services sunk their teeth into my family last September. My son has not had any antibiotics since January of this year. So what has happened?????? BE PREPARED - YOU WON'T BELIEVE IT..... My son has been in a regular education classroom since he began school. Where is he now? He is a special education classroom since March of this year - a class of "one" to be exact. He has became a "very autistic" child since no antibiotics. This is how he was at age 3 - but not since them thanks to antibiotics. What else. Like most of our children, he was successfully potty trained before four years of age. Guess what????? As of 8 weeks after the removal of his antibiotics, he now wears pullups 24/7. Yeah, that's right. The neurological regression (which continues) - has caused him to need to wear pullups all the time. He doesn't even recognize the signal from his brain that he needs to go to the bathroom. What else????? He goes to bed between 12 midnight and 1 am every night. (It used to be 9:30 pm up until January of this year). What else??? As of 4 weeks ago, when he has now begun to have joint pain for the first time in over two years again, he limps by the evening. He says his legs feel too "sharp and tired" to do anything but walk slowly. Remember, he is now "AUTISTIC AGAIN" - so he can't tell me exactly how it feels.

Guess what. My son tested positive for the strep virus about a month ago. So I was given "permission" to give him a whopping 14 days of amoxicillin for his strep virus. Guess what? Just like over the past 5 years, I knew what would happen. At the end of day 2, beginning of day 3 - EMERY CAME BACK... YEP....... The little buggar spirochetes were frozen - temporarily asleep, and Emery came back. Only for about 36 hours, but he came back. He came back to tell me that he loves me so much that he doesn't want me to die. So when I get old, I must check into a hospital so they can take care of me so I won't die. That's right - he was normal again. CERTAINLY NOT A SEVERE AUTISTIC. Oh - one more thing. He said, "Mommy, when can I start taking my pink medicine again (zithromax he is referring to) - so I can get rid of my Lyme.

So, right now, I am caring for a son who cannot change his clothes, cannot go to the bathroom other than in a pullup, he only eats "one food" for two weeks (horrible new obsessive compulsive eating disorder) for all three meals (we are on the mac n cheese phase now - such a "bad choice" for him) - and then he switches to something else. Before I forget, my son has never used a psychiatric medication his whole life. Until now that is. Off antibiotcs in January (January 15) Freaked out so bad on Friday February 13 that "I" was looking for a psychiatric hospital to put my son into temporarily because he wanted to jump out my glass dining room window. He now needs, again, first time in his life, three strong prescriptions for AUTISTIC CHILDREN. Yes, without antibiotics, he is very autistic, and, as has been studied by a very, very excellent Doc in the east coast, my son experiences "regressive autism" from his neurologic Lyme, because he probably is very mildly autistic without the Lyme.

I am sorry for rambling. But please. You must just focus on getting him well. I have just lost $70,000 fighting this. If you "ruffle" all those feathers that have been clogging your breathing tubes, it will only hurt you. "I" can't give up - because my son is suffering. But you are now on the "uphill". Let him get well - and LAY VERY LOW.......

In case you are interested, DYFS (Division of Youth & Family Services) is witnessing every single regression my son goes through. What are they saying. "Wow - he really is autistic isn't he. And they have blocked me from doing any kind of test to prove he has Lyme. And for the record, I have not one, not two,not three, but about 6 of the top, top Docs on the East Coast helping me in this fight. Two haven't charged me a penny. they have known my son since age three. My point, none of this matters.

I am sorry for rambling. If you want to do something - get on a news TV show, get in Newsweek magazine. Because I believe it is very unlikely you will win anything..

I hope you call me. I can give you lots and lots of things you can do to speed up your son's healing (as you can imagine, I am deep into exploration of the "non-prescription" cures now).

Good Luck, and congrats on the diagnosis. (And even more congrats on "meeting" your son.)

Try to read this story outloud to someone.

I can't do it...

Not without tears.

And I made the mistake of trying.... ugh..

I am still "thinking" deeply about this situation.

It breaks my heart.

Andie-

Your story is another one that I can't get out of my mind.

You said..

"I often wonder how those who are so arrogant and callous sleep at night in face of their own shameful actions while the truly innocent toss and turn in suffering and despair."

I wonder the same thing... all the time.

What eats at me is also the fact that the LAW gives these idiots the ability to make life and death decisions for all of us.. and they can withhold treatment for ANY reason what so ever... and get away with it.

They can be as stupid as a toad and as caring as uncaring as a fungus that lives in the swamp.. and still have control over OUR lives.

Their uninformed opinion can literally make us... or break us.

They can spend 5 minutes in a room with us.. that WE pay them for.. and be degrading, hostile, condescending, arrogant, and STUPID....

And get away with it!

Ahhhhhhhhhhh!!!!!

Now..

I appreciate Sandy L's advise.. and she has been through the wringer.. no doubt.

Note- I have supported her by composing a two page letter... and researching medical abstracts... and attaching over 100 pages of medical documentation that was sent to both of the people working on her case.

I also let them know that "we" were watching what they were doing... patients, citizens, and support groups from all over the country.

I also noted that there have been successful law suits with awards over 3 million dollars when doctors or others have refused to treat children with Lyme disease properly.

If that hasn't rocked their boat.. and her child is still NOT being treated... and is still being used as an "object" in a political fight... while he deterioates in front of everyone's eyes...

Then the ONLY other solution is to start shaking up the IDIOTS with legal actions.

If we don't start standing up for our LIVES.. and those of our children who can't fight for themselves...

More and more the fools will get away with doing this to others... and will destroy more lives.

The ONLY thing I know that will stop this problem is hitting them where it counts...

In the wallet... and in the court rooms.

All other ways to stop them are illegal, unfortunately.

If there is anything I can do... again, please let me know.

Good luck to all of you who refuse to let this situation continue and affect others down the road. We have enough to battle without all of this garbage.

xxxxxxxxxx

Hey Crime... How ya bean?

quote:

---

Originally posted by Tincup:

Hey Crime... How ya bean?

---

Right back where I started from. Two steps forward and one back is more like one step forward and two back nowdays.

Biting back, I also have an autistic child who was misdiagnosed, feel free to email me.

The mothers (typically) are accused of harming their children or exhibiting behavior that seeks attention for non-existent problems the children are said to have.

Unfortunately, according to this article, this syndrome has now gotten very popular among all kinds of people, including social workers at state agencies. Kind of a fad. They are seeing it when it doesn't exist.

I wish you luck and i hope you and your son will get better soon.

Thanks again for all of that wonderful info you sent in for me.

Listen to "this" update. I just spoke on Friday with the representive from the "Watchdog agency" in NJ - Office of the Child Advocate" - who is supposed to be able to "stop" the wrongs that DYFS does. And guess what. They can't help me! DYFS has the right to conduct "their own" medical investigation with "their own" Doctors - and to "stop" my son from getting any treatment while this investigation goes on. So that is the story. They are allowed to do this because their Docs say he doesn't have Lyme/never did, etc - and mine say the opposite. (Mind you - their Docs refused to read any of my sons medical records from the 4 1/2 years of treatment of Doc J, and didn't physically examine my son for Lyme symptoms. ) Anyway, "their" mind (DYFS' has been made up - just not put in writing by the Court yet. I have been told that "my Docs" better come up with something "in between" - "other than Lyme" because their needs to be some "middle ground" and DYFS Docs are not budging on the "no Lyme" thing.

As far as my son deteriorating in front of their eyes - complaining about feelings in his arms and legs that feel like "tacks" (nerve pain I am guessing - the "spider bite" thing) - they say "his autism is getting worse" - he needs treatment for autism.

Anyway, I am petrified for a state agency to get their hands on Biting Back and then she can't give her son the treatment he has finally been given for Lyme. Because there are so many Docs who steered her wrong - I am petrified one of them - or more - will turn her into to social services, etc - and then she will be in my spot. (I only got in my spot because my angry lawyer - exhusband called DYFS, along with his sister, a social worker in texas - because they knew the Lyme controversy would cause the trouble it did. But I had never had in the 5 years of Lyme treatment, so much as a single Dr. or professional accuse me of giving my son inapropriate treatment and or accuse me of doing something wrong. In fact, everyone has always said - "Your son is getting better and better and better". So if "I" could end up like I am - I am petrified someone who has just found the help her son needs for Lyme - will end up in my situation if she tries to sue.

Now me - I have nothing to lose. If I can figure out who/how to sue for what is happening now - it can't hurt me anyworse.

For what it is worth.....

Thank you again so much for all your help.

. . . I walked into our bathroom while he was taking a bath and he asked me to sit on the side of the tub. I knew my son was okay before he finished his sentence. I smiled at him through tears of joy.

He looked up into my eyes for a full minute, taking me in, absorbing me. He was familiar with my face but at this moment I realized he hadn't really seen me until this moment, either.

He reached up and put his little hand on my cheek and he held it there while exploring my eyes with his.

Finally he said, "You are the best Mom in the whole world."

I told him he was the best little boy a Mom could ever want, and I would never give up on him. . . . .

I'll get back to each of you once my neuro herx passes.

I too sat here with tear filled eyes as I have only seen my daugter's true self a couple of times.
I know there is a wonderful little gilr inside somewhere, dying to come out and be free.

When I pick her up in the afternoons she is always so manic and I can not talk to her or she is always angry and she does not want me to talk.

Rarely is there anything different. It IS so hard and really wears you down. Especially being a "single parent" right now with hubby gone.
I even feel more for you that are a full time single mom or dad.

We are leaving today to go to MO and see Dr. C. I do hope he can find my happy, "normal" little girl. I know it will be wonderful to meet her again too.

Please keep us updated when you can, as I know it is hard when you are not feeling well and do not have the time to sit down with thougts that are put together.

"The paper that the medical documents are written on belong to the facility. The words written on the paper belong to the patient."

I will be happy to gather and send medical abstracts, articles, etc... but...

I would need to know exactly what your attorney would require to help you both. It is a BIG field.. and needs to be broken down and to serve a purpose.

In other words.. it would be hard for me.. and you.. to sift through thousands of documents at random to find ones that MAY or may not be helpful in your case.

For example...

It would take hours.. days actually... for me to gather up a good "package" of material on the symptoms you listed above... in an order that someone could follow... IF that is what was needed. If it isn't.. then we have wasted time and energy.

Whenever you are ready to roll with an attorney.. be sure to contact me and have a specific list of what is needed. I will be honored to assist in any way I can once provided a "need to know" list.

In addition.. if I tried to gather now... a year or two may pass before the info is actually needed for deliberation or court.. then it would have to be re-done and updated as more info, that may help you, becomes available.

Does that make ANY sense?

I hope so...

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

SandyL...

Yes.. unfortunately they do have the right to run you ragged and do what they are doing.

Nothing, it seems, that has been done to this point has changed their minds or stopped them. They will use all their power to fight you. They will show no mercy.

What about this thought...

Do you think if you had gotten an attorney from the beginning.. like we are suggesting Biting Back do in her case... BEFORE the stuff blows up..

You and your son would have been spared a good deal of this trauma and panic?

I have been through probably one of the hardest fights with the government myself. I had to prove I had Lyme and what it did to me, etc.. YEARS before we even had LLMD's helping anyone or all the documents available.

After having to go through all that.. in my opinion...

I think a lawyer would be able to curb your frustration and file whatever legal papers needed NOW that would allow your son to GET treatment... at least until a decission is made by the courts. This has been done in the past.. but I am not able to say how... it would take an experienced attorney to help you handle them.

Plus.. the govt people are going to treat you like an idiot unless you have an attorney. To them you have NO power, NO voice, NO control. It is THEIR baby now... and they CAN do what they want unless YOU know how to legally stop them.

Perhaps if you had an attorney.. they would have to deal with HIM.. not you... so you could get stuff done without all this stress.

This is why I suggest Biting Back get an attorney soon.. before all this blows up in her face and she has the same troubles.

I truly do appreciate your point of view... and hope this turns out well for you.

I am done with the major legal garbage now (pretty much).. and am able to NOW sit back and look at the big picture .. after the fact.. and see what helped and what didn't.

Me fighting them myself.. no matter what.. was a waste of precious time and energy.

Like you said.. they already made up their minds and rubber stamped it.. and WON'T listen to reason.

You are now stuck.. unable to go anywhere, unable to get your child treatment IF you listen to them, and are being jerked around at every corner with things that take so much out of you.

I hurt to see that.. and wish it wasn't so.

And.. just so I know...

How will they know you are actually treating him?

Is he in their custody now.. living away from you?

Sory, I am a bit confused about that point.

I am afraid I still have the same thoughts as before..

Pack up the child and get the heck out of there. Get him treated.. no matter what.

Of course that is MY opinion.. and what I would do if it were ME.. and is not meant to influence you at all... just letting you know other options... and how I feel about this whole mess.

You do what YOU think is best for the child.

And remember...

I will be there to help in any way I can. Just ask.

We must stop the madness.

For the children.

For sure.

Your son will come back to you more and more as time and treatment continue. I wish you all the joy in the world in rediscovering what was hidden by this disease.

quote:

---

Originally posted by Tincup:
Hey hey Biting Back...

I will be happy to gather and send medical abstracts, articles, etc... but...

I would need to know exactly what your attorney would require to help you both. It is a BIG field.. and needs to be broken down and to serve a purpose.

In other words.. it would be hard for me.. and you.. to sift through thousands of documents at random to find ones that MAY or may not be helpful in your case.

For example...

It would take hours.. days actually... for me to gather up a good "package" of material on the symptoms you listed above... in an order that someone could follow... IF that is what was needed. If it isn't.. then we have wasted time and energy.

Whenever you are ready to roll with an attorney.. be sure to contact me and have a specific list of what is needed. I will be honored to assist in any way I can once provided a "need to know" list.

In addition.. if I tried to gather now... a year or two may pass before the info is actually needed for deliberation or court.. then it would have to be re-done and updated as more info, that may help you, becomes available.

Does that make ANY sense?

I hope so...

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

SandyL...

Yes.. unfortunately they do have the right to run you ragged and do what they are doing.

Nothing, it seems, that has been done to this point has changed their minds or stopped them. They will use all their power to fight you. They will show no mercy.

What about this thought...

Do you think if you had gotten an attorney from the beginning.. like we are suggesting Biting Back do in her case... BEFORE the stuff blows up..

You and your son would have been spared a good deal of this trauma and panic?

I have been through probably one of the hardest fights with the government myself. I had to prove I had Lyme and what it did to me, etc.. YEARS before we even had LLMD's helping anyone or all the documents available.

After having to go through all that.. in my opinion...

I think a lawyer would be able to curb your frustration and file whatever legal papers needed NOW that would allow your son to GET treatment... at least until a decission is made by the courts. This has been done in the past.. but I am not able to say how... it would take an experienced attorney to help you handle them.

Plus.. the govt people are going to treat you like an idiot unless you have an attorney. To them you have NO power, NO voice, NO control. It is THEIR baby now... and they CAN do what they want unless YOU know how to legally stop them.

Perhaps if you had an attorney.. they would have to deal with HIM.. not you... so you could get stuff done without all this stress.

This is why I suggest Biting Back get an attorney soon.. before all this blows up in her face and she has the same troubles.

I truly do appreciate your point of view... and hope this turns out well for you.

I am done with the major legal garbage now (pretty much).. and am able to NOW sit back and look at the big picture .. after the fact.. and see what helped and what didn't.

Me fighting them myself.. no matter what.. was a waste of precious time and energy.

Like you said.. they already made up their minds and rubber stamped it.. and WON'T listen to reason.

You are now stuck.. unable to go anywhere, unable to get your child treatment IF you listen to them, and are being jerked around at every corner with things that take so much out of you.

I hurt to see that.. and wish it wasn't so.

And.. just so I know...

How will they know you are actually treating him?

Is he in their custody now.. living away from you?

Sory, I am a bit confused about that point.

I am afraid I still have the same thoughts as before..

Pack up the child and get the heck out of there. Get him treated.. no matter what.

Of course that is MY opinion.. and what I would do if it were ME.. and is not meant to influence you at all... just letting you know other options... and how I feel about this whole mess.

You do what YOU think is best for the child.

And remember...

I will be there to help in any way I can. Just ask.

We must stop the madness.

For the children.

For sure.

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Tincup,

I have just come to a conclusion about my situation that is almost identical to what you just said.

My "not" utilizing an attorney to date may end up having some advantages when I "do" get councel now - because DYFS has acted unprofessionally, irresponsible and foolish. I have contacted the Lawfirm of Stellar (Steven Stellar) in Philadelphia - I will see what they can do. Anyway, DYFS has made some big, sloppy mistakes I think.

In terms of antibiotics - I have been "verbally" told not to give them to him. If I am "caught" - they will go to Court - say "no antibiotics" as per Court Order,and possibly remove my kids temporarily or permanently.

My son tested positive for Strep about two months ago. So I was "allowed" to give him amoxicillin. I waited until the time was right. And of course, within two and a half days of amoxicillin - my son "popped out" of his Lyme stuper again, and started reintroducing himself to me. Guess what his second sentence was, "when can I have my Lyme medicine back so I can get better again". I ALMOST CHOKED!

Anyway, the Docs who are helping me on this are now helping me document the improvement in only two weeks of amoxicillin. He has 95% control of his bladder again (that happend after only 4 days of abx). Believe me, I have very high level Docs helping me, and they are shocked. They say "If he is now improving, then why won't they just accept this at DYFS". The answer is that they have already made up their mind.

So I need to actually "stop" working on this so much for a bit, and "start working" at my job again - to save some money - because I know now I cannot handle this without an attorney.

My long term plan - If I can't/don't win this - I will have to (once I get on my feet again financially) - rent out my home - and rent a home just over the bridge from where I live in Jersey (Staten Island - luckily it is only about 25 minutes away). I can't believe it may come to this. But my lawyer ex-husband will just call the equivalent of DYFS in New York. So that is the problem. My ex-husband won't give up.

Anyway, when I hire the lawyer, I will be trying to gather stories from other Lyme Moms - stories like I am reading here. I think the attorney may want to get this info. HOpefully, my case may help others in the future.

You are so helpful and giving Tincup. Thank you

(I know I only post the bad stuff about my son. But along with this Lyme disease, God gave him a heart of Gold. Despite how bad he feels, he is not only the best child I have ever known - his inner qualities are better than almost every adult I have ever met - including myself. He views every thing as the glass is always "half full" - not "half empty".

I have been trying to coach him that now since he has to go back to school - fourth grade - in pullups - that he should use the rest room in the nurses office because his "school friends will not understand the pullups" - he said "No , I will use the boys room. My school friends will not laugh at me Mommy, because they are nice to me".

That is enough.

If you do all of this legal stuff you are thinking about - you would be HELPING ME BIG TIME - BELIEVE ME (with my situation).

My caution to you about "not doing it" was because I am afraid you end up in a situation like me.

I am talking with a very prestigious law firm tomorrow - the firm that won against the drug mfr for all the limerix vaccinations. I will mention there are more people like me - in other words - I will refer to your situation (without names, etc) - to get a feel for their thoughts on it.

I'm also angry as hell with a decade of being told I was crazy by my HMO docs, just to find out it is lyme.

The problem with litigating is that it takes years of time, energy and money to get anywhere. Just think it over before wasting time on anger, I think there is something to be said to focusing on getting well and if you want to make a change, go public with your story (call all newspapers, tv stations) and express your anger at the lack of funding for lyme research, the lack of acknowledgement that this is the fastest growing infectious disease in our nation with no response from our government, the lack of certainty often (I still have some docs who dismiss my Igenex results) and put a face to this disease.

The problem with litigating is that most of these docs do act "reasonably" the way they blew us off, because lyme is not known to most docs and that is a crime.

OK, so this is just my opinion. I'm as angry as you are about the time I lost, but I just want to get well and help others in my situation.

I've since moved on with my feelings regarding a lawsuit and we did publish our story in the newspaper. We were able to help at least one person receive an accurate diagnosis . . . somehow that makes things seem worthwhile.

Take care!

Read Lori's story's LAST UPDATE http://www.angelfire.com/nj/lorib/

I feel just the same as I did when I first came on Lymenet years ago and didn't really know what was wrong with Lori. Now it's my grandson. Thanks again for being here....

I've searched all over the internet and have never found if there was a relation between Lyme and Autism. Please direct me to any urls that will help.

With love and blessings,
Angela

Have I told you the story about when Cade was a little baby? I went with Lori to the baby doc and told him I felt that Cade should be tested for Lyme.

He laughed at me and told me there was no such thing as chronic lyme so the baby was probably fine as was his mother. His small son had been bitten by a tick and he told me that "he was fine"....!! He later became ill and although his father put him on antibiotics, the damage evidently had already been done. I believe that the whole family moved away from the area.

Please say a prayer for my grandson. Lori has been through so much.

Love,
Angela
http://www.angelfire.com/nj/lorib/

If only I could get them to listen . . . .

We emailed several months ago--I think...

You gave me doc S name in PN. She was a God send.

She told me to RUN not walk from the shrinks who were saying I was the one causing my sons hallucinations.

We haven't been back and are just handling things the best we can at home. It is so frightening that you try to do the right thing for your child and then the doctors blame the mother for what they refuse to understand.

Your post has made me so sad. Please just hang in there.
Do a lot of praying and follow your heart.

Write if you need to and I will keep you all in my prayers.

I'll reread...sorry.

Maybe you were talking about my post. Check it out a couple up from yours.

quote:

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Originally posted by Biting Back:
Thanks for your reply, I truly appreciate it.

I've since moved on with my feelings regarding a lawsuit and we did publish our story in the newspaper. We were able to help at least one person receive an accurate diagnosis . . . somehow that makes things seem worthwhile.

Take care!

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