She would curse at me, screamed that she hated me, would leave the house to walk around the neighborhood when these herx attacks came.

Do have Dr. J check her for Bartonella. With my daughter, for two years tests were negative and she finally got a positive from Igenex. A tic can carry lyme and many co-infections. Bartonella is one that heads straight to the brain.

With my elderly mom. her lyme/bartonella came across as psychosis and dementia. She paced all the time and truly believed her mouth was shrinking. She had no expression in her voice or face and would only answer a question if asked, no other speaking.

We honestly thought she was dying and her doctors said alteimers (sp?).

They were wrong with Bartonella treatment: Rifampin 600MG twice a day........she is as normal today as anyone. She lives by herself and is able to shop, cook, and remember details better than most people. She is remarkable and the proper treatment for lyme and bartonella can be a miracle!!!

Get tested repaetedly for bartonella.

My son Dominic was first dx when he was 6 and started treatment for the co-infections.

Reading your post is like reading some of mind. Dominic had mostly joint pain, breathing problems and extreme fatigue in the beginning.

Once he was treated for Babs, he started with the rages, irrablitity, forgetting how to read, write, ect. night terrors to me were the worse.

He then started treatment for Bart and is doing great.

Once on treatment for Bart he did start with very bad body odor and for a 7 year old I was amazed something so bad could come from someone so little.

We were told by our Dr (Dr. C) that we needed to detox more (epsom salt baths)and find a deodorant that didn't have aliumium.

He is doing alot better.

If there is anything I can do to help you, Please email me or let me know.

Welcome,
Starr

Thanks for your replies.

Kissis and Beach: Yeah, what is up with that funky smell?!

I also take it as a positive sign and assume it is just "Eau de Herx", the very pricey signature fragrance from the House of Borrelia, now available everywhere!

Also, thank you for all the info re bart and babs, etc. There are a lot of clinical and lab clues that he's co-infected in spite of a neg pcr. (we think the batch was bogus;the same pcr was neg for lyme) we're planning to retest.

Aunty and Beach: It was so encouraging to hear about the progress both Grandma and Dominic made in spite of their symptoms! How long were they on the abx?

Your stories really help me to focus on solutions and give me hope!

Sorry for the delay in getting back to you; This has been one of the "bad" weeks and my son has been miserable and upset; sounds and acts like a sick two year old most of the time. Too bad I was hoping he'd be able to start 1st grade.

I'm gonna take things day by day...Thank goodness I'm keeping a journal; no predictability yet.

Hugs all around,
andie

Well yes, my daughter (7yrs) has a bad smell and I bought her some deorderant. Did not know about the aluminum....or what was it?
I will look.
Rage......not sure if it is lyme or abx.....yes, she has major rage. That is the hardest to deal with.
Going to the dr this week for the first time.

Please keep us posted......and welcome to lymenet!!

Welcome to Lymenet.

My son Thomas also has lyme and mostly likey Babesia and he has done well with abx so far.

Hang in there Mom, it gets better. Sometimes
it just take a while.

Hopefully he's on a good probiotic, I give my son jarro and break the capsule into juice. Also, primal defense, is one capsule for kids, but if he can't swallow tablets, they have powder as well.

Glad you are getting some help. Hope he continues to improve.

Take Care, it's a long road but worth it. I keep hearing the kids beat this better than us.

Both my kids were born with Lyme. My son, when 3, was infected again. At that point, he began to regress neurologically, and I was told he had "regressive autism" (9 months later) and that he would probably regress so severely that he would need to be put in a home. that was 6 years ago.

He was successful diagnosed with Lyme (congenital and then reinfection) at age 3. Has been successfully been treated for 5 years on oral abx. Dr. J was also my sons Doc for the last 4 1/2 years. YOU ARE NOW IN GOOD HANDS - ANYTHING YOU NEED - DR. J WILL TAKE CARE OF. NO MORE WORRYING ON YOUR PART.

My son has had everything happen to him as you say your son had - including the smell. (I never mentioned the smell to anyone - I just kept looking in every oriface of his body for the source).

I will tell you three things: 1) You are in it for the long haul - so don't be in a hurry 2) All of those things you experienced - they are a part of Lyme treatment (especially when your son has such severe neuropsychiatric symptoms as my son had 3) I have found that the worse the herx - the better the outcome once it clears

AND VERY IMPORTANTLY - STAY AWAY FROM THE ANIMAL DOCTORS WHO PUT YOU DOWN AND SAY THERE IS NOTHING WRONG WITH YOUR SON - OR SAY THERE IS NO LYME. STAY AWAY FROM THE SHAPIRO'S AND THE OTHER ID DOCS WHO CARE LESS ABOUT YOU AND YOUR SON.

I have been working on getting rid of my sons lyme for 5 + years. The treatment has steadily worked - but it was slow. I would be more than happy to help you with some "tricks" - "what to expects", etc.

I know this is an especially rough time. But "do enjoy" those moments where your son is calm and then all of a sudden looks you in the eye and starts telling you things he has never been able to tell you, in a way he has never been able to you.

Since I have one foot in the bed...

Please accept my appologies for just posting an article and not giving a personal response.

I thought this might be something that would interest you.

Will chat later when I am more awake.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Chronic Lyme Disease

A Little Girl's Rocky Road to Recovery

Nicole was nine years old when the nightmare began. Although her precious life was slipping away, physicians at some of the nations most well known hospitals were unable to determine the cause of her ongoing illness. Nicole had a history of a tick bite and lived in a Lyme endemic area in
Maryland. She had multiple Lyme symptoms and a positive blood test for Lyme, yet doctors refused to explore tick borne diseases as the cause of her deteriorating condition.

They not only dismissed her mothers concerns about Lyme disease, they emphatically stated it absolutely was NOT Lyme disease causing the child's complaints and symptoms. Unsure of the source of Nicole's problems and
how to treat her, doctors eventually suggested electrical shock treatments.

Nicole's mother, Anne, refused to consider the shock treatments for her child and went on a search for answers. Thankfully,
it all came together with the help of a dedicated doctor, an Internet support group, and the strength of a loving mother. Together they saved this little girls life.

This is Nicole's story.

Approximately six years ago Nicole began complaining about flu like symptoms after a tick was removed from her ear. The many doctors visits, endless tests, and thousands of dollars in medical expenses provided no explanation and no relief from her recurring symptoms. Nicole suffered with
severe headaches, sore throats, fevers, stomach aches, fatigue, eye pain, and ringing in her ears. She developed a balance problem and constant dizziness.

Nicole's pediatrician in Maryland eventually
dismissed her complaints and indicated her problems were all in her head.

Doctor after doctor proved to be no help. Nicole's physical symptoms continued to worsen and soon spiraled out of control. Her hands and arms began to jerk involuntarily. She was pale, ran a
low grade fever, and eventually became malnourished and dehydrated. She stopped communicating with her family and no longer socialized. She was too sick to attend school and became extremely depressed, developed anxiety problems, and was unable to eat.

After a year of searching for answers
another Maryland doctor diagnosed Nicole with ``school phobia''. He insisted Nicole just return to school and ``get over it''.

Frustrated by the doctors attitudes and lack of care, Anne requested her daughter be admitted to a well known hospital in a search for answers. After twelve hours of waiting in the lobby and arguing with insurance companies, the little girl was finally admitted to the psychiatric ward.

Her physical condition had deteriorated to the point that she had to be placed on a feeding tube for nourishment. She was diagnosed with depression and was given several antidepressant medications
in an attempt to force her to be ``normal'' again.

Nicole's physical condition continued to go down hill during the six weeks in the hospital and her mother grew even more concerned. To make matters worse, Nicole began hallucinating and had bruises on her from falling out of her bed at night.

Although she pressed the issue, Anne was
repeatedly told by the many so-called specialists at the hospital that Nicole couldn't possibly have Lyme disease because she didn't have a rash or swollen joints.

The doctors couldn't pinpoint the
cause of Nicole's problems, but they were positive it couldn't be Lyme. Chronic fatigue syndrome was finally offered as an explanation for Nicole's physical complaints but Anne was not willing to accept another unsupported diagnosis. She decided she had to take matters into her own hands and
she began researching Lyme disease on her computer at night, after spending her days in the hospital with her daughter.

During her search, Anne discovered the Lyme Net site which had an online support group. There were over 3,000 members at Lyme Net, many who had been dealing with the same type of attitudes from doctors that Anne was experiencing. Anne posted Nicole's history and said of her current hospital stay,

``She states she does not feel any better at all. They (the hospital) continue to tell me
definitely not Lyme. I am so very scared. I live in Maryland and will travel anywhere for my daughter to figure this out. Please help me, the hospital continues to say it is not LYME. Is there anybody out there to assist me before it is too late? Thanks for taking time for me and HER!''

The responses Anne received were overwhelming. Lyme Net members had kind words for both Anne and her daughter. Their personal experiences with infectious disease specialists, neurologists, and other physicians over the years taught them that the medical community all too often overlooks
or rejects the possibility of Lyme and they warned Anne not to give up.

The volunteers suggested that she learn all she could about Lyme and tick borne diseases and provided her with literature and
medical abstracts. They also suggested Nicole see the world's leading tick borne disease pediatrician who has treated thousands of children, Dr. Charles R. Jones.

Anne made a last ditch effort to get her daughter help at the hospital. Once she learned more about Lyme and tick borne diseases she approached the doctors again. Returning home disappointed, she told the online group, ``The Dr. I saw at the hospital was horrible! He told me my daughter positively does not have Lyme before he even looked at her! He guaranteed that Lyme is
rare. When his assistant came in I mentioned running the Babesia and Ehrichlia tests. They looked at each other and didn't even know what I was talking about.''

Anne took her daughter out of the hospital and went straight to Dr. Jones office in Connecticut. The trip paid off. After nearly three hours of examining Nicole, Dr. Jones suspected it was Lyme
disease that was causing the problems. He tested her for other tick borne infections while she was there and ruled out other possibilities.

Totally exhausted from the trip, Anne returned home and posted this message to her new friends who were waiting to hear the news,

``It was the longest ride up and back with a child that is that miserable and sullen.''

She went on to say, ``I thank everybody
out there. I couldn't have done any of this without you all! My love and thanks to all!''

As it turned out, Nicole actually had three tick borne diseases, Lyme, Bartonella, and Babesiosis.

When the results were in, Anne posted:

``Dr. Jones, I love him! He is so sweet. The results show that she does have Lyme, is positive to the HLA-DR4, which means she will have the symptoms worse, and she does not have Ehrichlia but does have Babesia and Bartonella. He (Dr. Jones) is the sweetest, dearest man, and smart. He takes his time, you don't feel rushed. I just can't say enough good stuff about him.

He also told me to tell Nicole AGAIN that she IS "fixable"!!!!'' Nicole immediately started treatment for the multiple
infections. With Dr. Jones skillful guidance and a mothers love and determination, Nicole began to improve.
It has been a rough road to recovery with expected ups and downs but this beautiful young lady is now back in school and is smiling once again. She was recently voted student of the month and is on
the honor roll. Anne wants others to know they are not alone in the fight to get diagnosed and treated for Lyme and other tick borne diseases.

She recently shared some of her feelings:

``I want everyone to know that I was pretty much on my own except for the Lyme friends I made and the Lyme doctors who stood by me. My family found it very hard to support me because when two of the worlds leading hospitals insist she doesn't have Lyme, how can you not believe them?

My instincts told me different. I believe a mother knows her child and knows what is best for them.

Doctors need to be more open minded and listen to parents. They judged me so wrong, I only wanted the best for Nicole and now she is on her way to recovery. I am so thankful for the out of state doctors and the few doctors here in Maryland that believed in me and followed through.

I thank everyone who has helped and supported me and been there when I needed help.

My message to anyone with chronic Lyme is don't ever give up! It may take a long time but never never give up.

Forgive the all-in-one reply; I'm soooo tired I inadvertently fell asleep when I sat down this afternoon.

Beverly, Lookin4, Lymiecanuck, Sandy and Tin Cup: Thank you, thank you thank you!!!

Yeah, this ride is really rough but you are all making it easier with your support, experience, perspectives and humor!!

JC, 6, has tested in the gifted range on "good" days ("Wow, your son is so smart! I can't believe he read the whole menu in English and French!..) and retarded on "bad" (Pitying looks from other parents who try to talk to him as he vacantly stares into space, mouth agape)

His cognition and communication constantly vascillate.

His moods, too, are a roller coaster. Sometimes steady, easy going, and sweet
("Why, what a nice little boy you have there"); other times: "What the heck is wrong your kid, Lady?"

When he's in a "mood", its like he has the same feelings as everyone else, except they're multiplied by the power of 10!

These moods can last for seconds or hours or days...I really think it's a form of CNS seizure.

At any given moment, throughout the day, any time, anywhere, without warning:

He's not just amused: he's rolling on the floor laughing hysterically, screaming himself hoarse, unable to disengage;

He doesn't just not like his turkey sandwich: It's put together in the wrong order! Disgusting! Spit and throw it around the room!;

He's not just disappointed with the color blue in his drawing: He's Furious! Its an outrage! Tear it to pieces with his teeth and smash the crayon into the ground;

He's not just sad about me leaving for the grocery store: he's clinging to me, inconsolably sobbing, pleading that i can't leave him alone with ....whomever.

And I guess that leads me to what has been hardest for me. He is so often unable to be alone, with others or play by himself.

I know this is because he really doesn't feel well, can't think straight and is overwhelmed. Being with other kids/people is often very challenging for him and them. Usually only Mommy will do. I'm soooo tired.

The more I learn about this illness, the more I understand how much he depends on me on several levels.

I help him focus on a moment-by-moment basis, I translate or mind-read what he is trying to think or say, I filter sometimes overwhelming input,I have an ever-growing bag of tricks to distract, soothe, admonish, amuse, redirect, mollify or sometimes just plain old ride it out with him.

He knows I love him and like him and am proud of him.

My most valuable jewel from the treasure of wisdom you have all shared with me is understanding that this is NOT a race.

This is Everest, a journey filled with unexpected highs and lows. Many have gone before, but every climb to the summit is different.

You have all really helped me and my son because:

Starting today, I am going to start taking much better care of myself, stop blaming myself for what all those ducks did to us and appreciate what an amazing job my son, my doc, all of you and I are doing !!!

All the best'
Peace,
andie