Topic: Not Lyme? A Little Girl's Rocky Road to Recovery
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This article was published in a Maryland Newspaper in 2002 (?) I believe. I left out the gory details but they included shock therapy and more... and HO HO hospital and Children's Hospital.
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 in Maryland. 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. There is hope for everyone, you just have to find the right doctors.
And a special thanks to all the doctors out of state that put up with my persistence. I drove them crazy. I don't know how they stuck with me, but I thank God they did.''
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hopefully she is progressing well.
I, too, can thank LymeNet for educating me and empowering me to seek the help I need.
Until I found this site I had no idea that the ELISA test was worthless.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks Tincup for posting this story.
It is another example how each and every person must become educated, and be an advocate.
Congratulations and thanks to all the lymenet members who help others!
I'm so glad she's doing ok.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Thank you TC for sharing. It's always good when Lymenet can reach others that are struggling with the doctors that feel Lyme can't do any of this to people.
I hope she will do better now that they know what they are fighting.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Thank you TC, that story was so sad but yet refreshing to read.
I myself am very proud to be a member of LymeNEt and that's why I tell everyone I can about this site.
After all some or maybe most of us don't have anyone to talk to BUT all our friends on this site.
Thanks Again TC, Have a good weekend! Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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bettyg
Unregistered
posted
tc,
please copy this link to SUCCESS STORIES IN SUPPORT; it will help others too! big thanks
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Thanks for posting.
I needed to read this today. This board has been a life saver for me.
This board has given me the strength to keep going, even when The doctors do not find anything wrong with my daughter.
I am hoping our prayers will be answered when we see the best Lyme Pediatrician soon.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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For doctors not being able to diagnose Lyme is one thing. Insisting someone does not have Lyme while unsure is a totally different offense. I wish they can be sued.
Posts: 822 | From midwest | Registered: Apr 2009
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bettyg
Unregistered
posted
outstanding; i posted it in success stories; i didn't see it there...
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Two things...
1. No word from Nicole or her mom for several years.
No news in this arena is good news. They would be in touch if there were problems.
2. Unfortunately, this same thing continues to happen. There was a case nearly identical to this one, again this year. The same HO HO HOPKINS was involved.
The child is very disabled because of the experience ... but was pulled out of there after the parents learned more about Lyme....
And the child has since been seen by our wonderful Dr Jones... thanks to the efforts of Maryland Support Group members... and is finally seeing some improvement.
You'd THINK Hopkins would have learned by now...
But NO!
They were sued and that hasn't stopped them.
They've been warned by many professionals that they need to educate themselves ... and that hasn't helped.
They've been included in an investigation with the Attorney General for their misdeeds and discredited for their conflicts of interest... and they STILL don't get it.
They just won't quit doing damage!!!
But keep in mind they are home to some of the notorious IDSA ducks. They have one author working there, that I thought at one time actually had sense enough to not stick his name on something so horrendous as the IDSA guidelines. Guess I was wrong. (If I were him I'd get out now and denounce the group before the big axe falls.)
Then the guidelines editor is there... who openly admits he won't treat with antibiotics in an article ... and prefers to send patients who are still sick for psych help, exercise, pain meds, etc.
He also admits more research needs to be done to determine what is causing the continuing symptoms after their "cost-effective" treatment was given.
If you DON'T KNOW... don't exclude ALL treatment options.
And... this is a kicker... it was Wormser's home at one time... and guess who taught the Hopkins ducks about Lyme?
Was it Bumsteer or Dattwyler or both? I forget... but... either or... is NOT a happy situation. Toss Wormser in the pile and uuuuuuuuueeeee what a mess!
On top of that... McStupid claimed in one of the nastiest articles I've seen to date (lots of ducks) that he is from there too, but he forgot Hopkins was actually located in Baltimore... and not in his own back yard, so the town name is wrong on the article.
"Johns Hopkins Medical Institutions, Crofton, MD -- E. McSweegan."
So he is just a "wanna be" big duck .. but still.... that "typo" says it all.
Ducks of a feather, flock together.
Of course this is only MY opinion.
Bless our children that have been caught up in this mess... and their parents too.
YOU can make a difference and you have. Keep working hard to educate others. Keep supporting the efforts of our national groups and your local support groups.
It sounds so so familiar, many of us have been through a similiar experience.
Ours invloved dealing with the "top" hospitals here in Boston. We even had the help of a family friend who is the head of one of these hospitals but it didn't make a difference. We were still told that our daughter was just emotional even though she couldn't walk, talk or eat.
Eventually following the same route as the mom above we found help and our daughter is on her way to recovery.
Parents never give up. Follow your hearts. Only you know your children. You can be their champions.
Thank God for those Drs that help Lyme kids and their families.
Friends of Lymenet you are the best!!!
Posts: 118 | From Here | Registered: Sep 2008
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