posted
Did anyone see Medical Mysteries on ABC last night? I was amazed that they had a little girl with symptoms throughout the show and the audience was supposed to guess what she had.
She had blurred vision, slurred speech and couldn't walk. They did MRIs on her, spinal taps, etc. In the end they found a tick on the back of her ear.
The doctor said they pulled it out and symptoms ceased and that was the end of the show. I couldn't beleive it. They actually called it toxic posioning from the tick and didn't go into Lyme, Bartonella, Babesia, etc. And this was at the Children's Hospital of Philadelphia. I was appalled.
I feel like writing into the show because their presentation of the disease was very unorganized.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
I was upset too! They made it sound like all that they had to do is remove the tick and presto, instant healing. How misleading to families that you just remove the tick and all symptoms disappear. I can see a parent thinking hey I removed the the tick myself . . . no need for a doctor. Should we all write the network?
posted
I saw this too. As Soon as they said that the little girl was taken to Children's Hospital in Philadelphia, I knew it was tick/co-infection related. Like you both thought, how appalling!!!!!
Everyone here warned me about taking my daughter there when I was looking for help, knowing that all symptoms pointed to Lyme. We didn't go...thank goodness. This hospital is located within 30-40 minutes of the most Lyme-endemic areas of the country, West Chester County, PA. It is reported that over 40% of the households there have at least one family member with Lyme.
This is why Dr. C. is booked for 11 months in advance.
Yes, we should write to the show!!!I'll find some info on a link that can be used.
Posts: 263 | From Georgia | Registered: Feb 2006
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Ann-OH
Frequent Contributor (5K+ posts)
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posted
I will definitely send a message to that show. Is it part of the History Channel? I can't find it by googling "Medical Mysteries."
Ann-OH
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posted
Here is what is posted on the ABC website:
Medical Mystery: A Mother's Touch Solves It Why Is This 5-Year-Old Sick?
By ALISON LYNN July 27, 2006 -- - Keeley, a 5-year-old girl in suburban New Jersey, awoke in the middle of the night with alarming symptoms.
Keeley's mom, Tara, who asked that the family's last name not be used, says she heard a noise coming from her daughter's room at around 4:30 in the morning.
"I called my mom 'cause I was trying to stand-up but I couldn't. I just collapsed on the floor," Keeley said.
"I could tell right away there was something wrong with her speech. She said, 'Daddy, I'm seeing two of you," said Keeley's dad, Bill.
Tara said she couldn't understand how her daughter could be fine the day before and then so sick within 12 hours. Tara and Bill rushed Keeley to the hospital, where their daughter got immediate attention in the intensive care unit.
Dr. Fred Henretig, professor of pediatrics and emergency medicine at the University of Pennsylvania School of Medicine and the head of the Clinical Toxicology section at Children's Hospital of Philadelphia, handled Keeley's care when she arrived at the hospital.
Henretig says a number of things were going through his mind. "What is going on here? Why is this child half-paralyzed? Trauma, poisonings, fulminate infections. Also, although more ominous -- you worry about brain tumors and some kind of vascular catastrophe such as a stroke."
Tara says the physician wanted to get an MRI of her daughter to see if they could see anything like a tumor.
"I was scared out of my mind. We found a seat in the waiting room and basically just prayed," said Bill.
Brain Tumor?
"We were in the waiting room for a while and then the doctor came out and said, 'Everything looked fine. There was no sign of a tumor, there was no sign of aneurysm,'" Tara said.
So the doctors started from scratch. "[We thought] about every other possibility of rapidly progressive weakness in a young child Keeley's age," said Henretig.
Tara says she remembers the doctors asking a lot of questions about what Keeley had been exposed to.
According to Henretig there are a number of poisonings that can cause weakness. "The most classic is botulism. In years gone by, polio could present this way. Of course, polio is very rare in the United States. And then tick paralysis, an illness brought on by the bite of certain species of ticks."
"I think they went on history for a lot of things as far as eliminating the botulism and the polio and the ticks and things like that," said Tara.
So then, Henretig says, "we shifted our thinking a little bit to consider Guillain-Barre syndrome, which is a poorly understood illness where your body, in essence, creates an immune reaction against the nerve roots in the spinal cord."
Doctors began considering Guillain-Barre because Keeley exhibited some of the symptoms, like weakness in the legs.
"They were leaning towards Guillain-Barre, and it was a disease that I had never heard of. And to start this process they would need to do a spinal tap," Bill said.
"The spinal tap itself was probably the worst part of the whole thing. Keeley was crying during that," Tara added.
Henretig says the doctors on the case were concerned that her weakness would progress rapidly. Typically, with Guillain-Barre, the weakness progresses upward through the body, eventually affecting the arms and then the respiratory muscles. That's when the syndrome becomes a life-threatening illness.
Spinal Tap
The doctors did a spinal tap on Keeley. The little girl remembers just how much that hurt: "I was in pain."
Henretig says she was in so much pain, her mother was comforting her. "After the procedure ... her mom was stroking her hair."
Ironically, the mother's comforting touch is what solved the medical mystery.
"My mom felt something right here, next to my ear. And then my dad looked at it and he said it was a tick," Keeley said.
Bill recalls just jumping up and down. "I ran into the hallway and yelled it out, 'It's a tick, it's a tick!'"
The tick was removed and Keeley's condition started to improve within a few hours.
"In a sense, it's as if the tick is actually giving you a little I-V infusion of its toxin," Henretig said. "Once the continuing injection of the toxin by the tick is ended, the patient begins to recover relatively quickly."
Keeley went from what doctors thought could be a potentially life-threatening illness to a cure just by removing a tick with a pair of tweezers. Henretig says Keeley's case was "a wonderfully gratifying experience... [it] taught us all a lesson we'll carry with us for the rest of our careers."
posted
Thanks for the writing on the program last night. As I sit here and read it again I just cringe. Did those doctors even ever test her for lyme/coinfections? This is so sad. I wonder what her state of health is now. I almost feel like trying to track the family down to tell them.
All three of my kids have lyme and various coinfections and it just kills me to see the medical profession handling a case like this. And especially in a children's hospital. Tick borne diseases should be the first thing that come to mind- especially in the nice weather.
I'm going to email ABC and I ask that as many others send a short note to them as well. If we all chime in maybe they will do a piece on the disease on one of their shows. They actually need an investigative reporter to do a story on this stuff.
Thanks for all your replies- I'm glad I'm not the only one that was amazed with that Medical Mystery!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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5dana8
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posted
Here's the link from over in general kelmo was posted, if you want to write letters:
posted
I thought there was another coinfection -- Tick Paralysis -- which does immediately improve once the tick is removed? This is not Lyme disease but another tick-borne illness.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Areneli
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posted
Yep, this was not Lyme but other illness caused by ticks. It is trully over once the tick is removed. I believe it is caused by some of the chemicals tick secrete. It is well described in medical literature.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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They're looking for story ideas for the show so fire away.
Posts: 1010 | From Mars | Registered: Feb 2004
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kelmo
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posted
Oh...some of us FIRED AWAY. I really think we should encourage them to do an hour totally on Lyme. My daughter said they not only need facts on the disease and it's co-infects, but also interview the affects on peoplelack of medical help. Of course, there has to be constant reminding of the $$$$ involved.
Posts: 2903 | From AZ | Registered: Feb 2006
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Ann-OH
Frequent Contributor (5K+ posts)
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posted
Here is what I wrote to ABC primetime and the Medical Mysteries site seeking interviewees. [quote] You did a very incomplete job on the Medical Mystery about a little girl with attached tick - who suffered from Tick Paralysis, a fairly rare tick-borne disease.
You never mentioned the name of the disease, or that it is the only tick-borne disease cured by removing the tick.
Since that will make a lot of people think that all they need do is remove a tick and they will be cured, you have presented a very, very dangerous picture of all tick-borne diseases.
You should do the responsible thing, correct your error and present a case study of someone with Lyme disease and show how dangerous and even fatal some tick-borne diseases are.
Some of the diseases you can contract with a single tick bite are Lyme disease, Babesiosis, Ehrlichiosis, Bartonella,and Rocky Mountain Spotted Fever. Two and possibly three of those can be fatal.
I know others will respond with their stories, but I will be glad to help you find a good subject for your show on Lyme disease if needed. [end quote]
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Here's mine:
My daughter started with migraines, then progressed with joint/muscle pain, insomnia, fatigue, night terrors, depression/anxiety/OCD. The list goes on.
We went to every pediatric specialist in the Phoenix area. She had "syndromes", but nothing they could call a disease. They would send us home with medication to help with symptoms. Most of the doctors thought it was psychological, and would mock her. Yet, she gained 80 pounds in six months. She developed asthma, when she never had it before. By the end of her junior year could no longer attend high school. With much research on the internet, I was directed to a doctor. In our first visit, without me telling him, he described all her symptoms and confirmed with a bloodtest...Bartonella, a tick-borne infection. But, we live in Arizona! This could've come from a lice infestation in first grade, a mosquito, our indoor cat.
The bacteria invaded every system of her body, allowed a soup full of viruses to enter, and has essentially disabled her. She has no friends. She completed the senior year of high school on the couch. Her dreams for life have been put on hold as she takes a tray full of medication and herbal supplements daily to try to kill the bacteria that has even taken over her immune system. She is in constant pain, and tries to find joy and hope in each day.
She is my hero, and I am right along side her reading when she can't, and tending to her because her hands are so arthritic she can't move them.
Her story isn't unusual, I found. There is a website called Lymenet.org where there are nearly 10,000 members who are suffering. Most have lost their jobs, nearly all are traveling out of state to find a doctor to treat them. Almost all of them are paying out of pocket for expensive travel, exam costs, labs, and medications and supplements.
Attention needs to be brought to this issue. It is growing as quickly as the AIDS epidemic. Simply removing the tick does not bring instant healing. That is just the beginning of the nightmare known as Lyme disease.
Posts: 2903 | From AZ | Registered: Feb 2006
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5dana8
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posted
up
Just about everyone on this webb site has a sad story to tell of being in the duck mill and being ignored and left to get worse.
Now is our time to be heard. Please write primetime. Just click on lymelighters link above.
If enough letters flood in maybe they will finally air a show on national TV to let our stories be heard.
This is a rare opportunity
Lets go people!!!!!!!!!!!!!!
Good letters kelmo & Ann
Now for you people who are shy like me you don't have to post your letter here. Just make sure to write in.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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