CINNAMINSON -- Jeff Kolarovic is sick and tired of being sick and tired.
For more than two years, the former Boy Scout has been engaged in a battle to beat the debilitating effects of chronic Lyme disease.
``It's been hard. I just want to get better,'' the 15-year-old said in a whisper as he sat at the kitchen table of his family's Morgan Avenue home with an intravenous antibiotic drip draining into his vein.
What started out as typical flu-like symptoms evolved into a situation that has left the 15-year-old so fatigued that even the simplest tasks leave him drained.
``It kills me to see him like this,'' Jeff's mother, Susan, said. ``It's been such a long struggle.
``He was such a good student. We forced him to go to school for the first two days in eighth grade. It was awful. He was too sick to do the work. He would come home from school and just drop from exhaustion and fatigue.''
Since then, Jeff hasn't been able to attend school. He's missed the eighth and ninth grades and if his chronic ailments do not improve, he likely won't be coming back to school any time soon.
And after two years, most of Jeff's friends seem to have faded away.
``What it really comes down to is that he has no life. He doesn't see anybody...,'' Susan Kolarovic said.
She said that what is worse to her is that some people don't believe her son even has Lyme disease.
``It's extremely hard because a lot of people don't understand chronic Lyme disease,'' Susan Kolarovic said.
Lyme disease is the most prevalent tick-born illness in the United States.
Diagnosed incidence of the disease, named after the northeastern Connecticut town of Lyme, where it was discovered more than 30 years ago, has tripled since 1993, according to the federal Centers for Disease Control and Prevention.
New Jersey ranks third in the nation with more than 3,300 cases, according to the most recent statistics compiled by the CDC in 2005.
``The disease is decidedly on the rise,'' said Pat Smith, president of the Lyme Disease Association based in Jackson Township, Ocean County. ``It used to be primarily found in states like New York, New Jersey and Connecticut, but now we have seen it in 49 states and the District of Columbia.''
Nationwide, more than 23,000 cases were reported in 2005, but the CDC says studies have shown that only 10 percent of cases are actually being reported, meaning nearly 230,000 people could be infected with the tick-born illness.
Dr. Eddy Bresnitz, state epidemiologist and deputy commissioner of the New Jersey Department of Health and Senior Services, said there has been a steady increase in recent years in the number of cases here, but he said that could be because of better diagnosis of Lyme disease.
``The increase is not all due to a true increase,'' Bresnitz said.
He did say, however, that during the last reporting period in 2005, New Jersey had ``the most cases ever,'' with Hunderton County ranking at the top of the list with 366 cases reported.
During that same period, Burlington County reported 158 cases of Lyme disease.
The Infectious Diseases Society of America recently announced new guidelines for the treatment of Lyme disease. The recommendations basically state that if a person gets bitten by a tick and begins to develop symptoms of Lyme, they should be given a 2- to 4-week course of antibiotics to combat the infection.
So what's the problem with Jeff Kolarovic?
In most cases, the antibiotics work effectively. However, for many other patients like Jeff, who don't know they've been bitten by a tick and don't develop the most obvious symptom called a ``bulls-eye rash,'' the 2- to 4-week antibiotic treatment has not proven to be the answer.
``The problem is that if you don't know you have it, you're not getting appropriate treatment, which allows Lyme disease to get out of hand,'' Smith said.
Furthermore, many doctors misdiagnose Lyme because of the similarities in symptoms, leading to delays in treatment.
Jeff currently is being treated by a specialist in Connecticut for Lyme disease and co-infections. His prognosis is not clear at this time, and the specialist is focusing the treatment on his symptoms.
Some of the problems that can arise from untreated Lyme disease include cognitive, memory and neurological problems, heart-related complications and tremendous pain in the joints and other areas of the body.
``It can attack every organ in the body. It can even attack your eyes,'' Smith said. ``It's a very serious problem. And it's not just in the United States, it's now worldwide.''
Unfortunately, funding for research and treatment of Lyme disease has been somewhat limited when compared to other vector-born illnesses like West Nile virus.
Smith said the CDC and the National Institutes of Health spent a combined $78 million on West Nile disease, compared to $33.6 million for Lyme disease.
New Jersey Congressman Chris Smith wants that to change.
Smith, R-4th of Robbinsville, has authored the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, which would provide an additional $100 million in funding over the next five years.
The purpose of the act is to improve testing and diagnosis of Lyme disease, in addition to enhancing health surveillance systems and increasing public awareness of the disease. The act would also create an advisory committee on Lyme and other tick-born illnesses.
The bill was introduced last year but it never made it to the House floor for a vote.
Smith spokesman Patrick Creamer said the bill is currently in the House Energy and Commerce Committee. If approved by the committee, the bill would be forwarded to the full House for a vote.
In the mean time, doctors, advocates, politicians and patients all say the best medicine is prevention.
``You have to become vigilant,'' Pat Smith said, when going into wooded or grassy areas. ``It doesn't mean you stop going outside or you stop living. It's just that when you do go out you need to take proper precautions such as wearing light-colored clothing, tuck your pants in your socks, so you can see any ticks climbing on you.''
Smith said people also need to do a thorough check of their entire body, especially if they have been in wooded or grassy areas where ticks live.
``Ticks will bite you anywhere. They love to attach to the folds and creases of your body,'' Smith said.
As for Jeff, his family, which spent nearly $30,000 for medical treatment last year, just wants him to get back to living a normal life.
``I would love for him to have some sort of teen-aged life -- some sort of normal existence,'' Susan Kolarovic said. ``It's hard to have hope... It's been a nightmare.''
Jeff closed the conversation the same way he started it an hour and a half earlier.
``I just want to get better,'' he said.
He then had to lie down for the rest of the day, his mother said later.
E-Mail: TODD MCHALE
May 27, 2007 8:29 AM
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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bettyg
Unregistered
posted
writer did a good job here; showed many facets of lyme .. quoting patient, mom, pat smith, etc.
glad they showed $30,000 of treatment costs to give folks a rough idea, but of course, they are thinking INSURANCE WILL PAY that.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I think it is so difficult to be an adult and be chronically ill.
I can't imagine missing some of the "best" years of your teens to Lyme.
It really reinforces my conviction to have my children aggressively treated.
I don't want this life for them.
My prayers go out to Jeff and his family.
Good article.
I had no idea that so little money was spent on Lyme disease.....
I knew it couldn't be much, but still...
It is already too little funding coming too late....
Darn politics and personal agendas!
Thanks for posting this.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Hello - I am the dad of Jeff in the article ("jeffsdad").
We were very pleased with the reporter's article. My wife had provided tons of informations (verbal & pamphlets, brochures, etc.) and it's hard to get all of that in one article.
The article started on the front page, and combined with a photo of Jeff (looking at his IV drip) was about 50% of the front page!
The paper reaches about 35-40 thousand customers, so we were very pleased that we can impact so many. We wanted to educate people to the effects of Lyme, hopefully others will be helped.
Ca..lyme-thanks for posting. Geneal- thanks for the prayers.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Jeff's dad..I'm so glad you were able to tell the story.
My daughter started getting ill around that age, but wasn't diagnosed until almost 17.
The story sounds like hers...no life, no friends. Now she has been isolated so long she is afraid to go out and meet people.
What is tragic about this disease is that it's treatable and they are denied treatment.
Tell your son that he is not alone, even though he is alone. I would love to have a camp for kids of this disease to meet and talk about their illness. Wouldn't that be wonderful?
quote:Originally posted by kelmo: Tell your son that he is not alone, even though he is alone. I would love to have a camp for kids of this disease to meet and talk about their illness. Wouldn't that be wonderful?
That would be a great idea!! Maybe a weekend retreat.
Thanks "jeffsdad" for getting the word out. That was a great article! [maybe they'll get "tick-borne" and "vector-borne" right next time!]
I'll put Jeff on my prayer list too. I'm so sorry he is still so ill. I missed 3 months of school my junior year and it was tough not being with all my friends.
Kelmo....maybe your daughter could email Jeff!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
JEFF'S DAD! CONGRATS on working with this reporter to get such a good article on your son containing so many things!
never put 2 and 2 together; jeff and jeff's dad!!! we're so proud of you all for pursuing to EDUCATE the public.
it's an article we need to email the paper on the great job done!
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
There is a Lyme teens list!!! Forget what url- someone will post it hopefully*)!!! You guys did a great job with the article, Jeffsdad- sorry he is sick!!! I hope he gets better!!! IV worked for me but not until the 7th month did it kick in- it took a while. Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Thanks to all.
Posts: 36 | From nj | Registered: Sep 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I agree Lymedad. A weekend camp is a nice thought, but driving in a car wears my daughter out. Let alone trying to sleep in a strange bed, keeping up a conversation. It wouldn't be realistic.
My daughter can't handle the teen chatrooms. Everyone is on different levels of sick. And some it affects their brains. A teenage brain with Lyme is a dangerous weapon. My daughter has gotten better, but it was rough for a while.
I'm glad your son has you to understand. It's a hard fought war of misdiagnosis and treatment.
I am too tired myself in the caregiver mode to even organize something anyway.
posted
I received a call yesterday from the reporter who seemed quite surprised at the number of supportive emails about the article from as far away as Ca.
This feedback should help to support future coverage of this issue.
Thanks to all who provided feedback!!!
Posts: 36 | From nj | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
He wrote a nice letter back!! Nice reporter*)!!
Great work, Jeffsdad- if only all Lyme patients families were like you we'd have the IDSA beat!!
One day*)!*)!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Yep, I sent an email to all three contacts you gave. I'm waaay out west, as well.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
This is one response I got from the reporter
Mrs. "Kelmo": Thanks for the kind words.
I'm sorry to hear about your daughter. Unfortunately, over the last few days I've heard a number of similar stories from throughout the country.
I hope for your daughter's sake and the countless others across the country infected with this terrible disease there will be some effective treatments soon.
posted
Wow- I just read the article and it was like the article was written about my son. My son, Dustin is 11, was diagnosed 2 years ago, is a former Boy Scout, had been in scouts since the 1st grade, and he has not been in school for the past 2 years, and says all the time "I just want to feel better"- he too, has not really had a life for the past 2 years either, started out with the IV antibiotics in the hospital after being admitted for Lyme-mennigitis and has been on oral meds since. He really has not had any contact with friends during his illness, so Jeff,you are not alone in this journey. Kudos to your reporter who did a great job on the article, I sent him an email tonight thanking him. We set up a website for Dustin, if you don't have one you may want to consider it. Please feel free to stop by Dustin's and check it out. It is free and sponsored by a non-profit organization, caringbridge. www.caringbridge.org/visit/dustineckert
posted
Robin, Very sorry to hear about Dustin's problems but have hope!
Very nice website, yesterday's journal entry was right on the mark - "Boy wouldn't it be nice if we could continue to see improvement and finally something is working in his favor.". We're right there with you.
Jeff's article indicated "former" boy scout but he is still a member. He still has the goal to obtain his eagle scout rank, but it is very, very hard for him to stay focused and complete the requirements.
All the best wishes for Dustin, you and your family as you struggle through this.
Posts: 36 | From nj | Registered: Sep 2006
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posted
I am so glad Jeff is working on his Eagle Scout- what an accomplishment- he has 3 years to get it done and we certainly wish him the best of luck. Our older son, Brian, who is 16 is closing in on his Eagle and it is hard work. Dustin is hoping to go back some day but for now he is just concentrating on getting through his schoolwork and I am sure Jeff knows all about that too.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Robin,
(Here's a copy of what I sent Robin through her Caring Bridge site for Dustin:)
I ...went to Dustin's Caring Bridge site this morning. I'm sorry you're family is going through all of these medical problems.
I see Dustin has been diagnosed with Lyme disease. I have too, along with my husband and nearly all of my children. My teen daughter has the most symptoms, which is mostly pain...excruciating pain all over her body and no medication helps. She also has a seizure-like movement disorder. Her doctor thinks all this is caused by a Lyme infection throughout her body, including her brain.
Allergic-type reactions are common in Lyme patients....they're called herx reactions. It's a shortened word for Jarish-Herxheimer reaction. It's a reaction a person has to his Lyme medicine. Many Lyme literate physicians see this reaction as confirming the diagnosis of Lyme disease.
Increased immune complexes are very common in Lyme disease. It sounds as though your doctor is doing the right tests to rule out other causes of Dustin's problems, but it also seems like he's surprised that Dustin has these high levels. I wonder if your doctor is knowledgeable about Lyme disease. Lyme literate doctors understand these findings.
Also, you can't rely on the Lyme antibody test to tell you anything....such as whether you have Lyme, or whether the treatment is working, or when to stop treating. A doctor who uses the Lyme titer to gauge treatment is not a good doctor for treating Lyme disease. He may be a good doctor otherwise, just not for Lyme.
It sounds like you need a Lyme literate medical doctor. All the things you mention in the journal are common problems with Lyme. I don't think any of his symptoms would surprise a Lyme literate physician. The only thing I don't know much about are the allergy symptoms. Chronic sinusitis, respiratory infections, bronchitis, and ear infections can be Lyme symptoms.
Don't accept my advice as medical truth. Do the research for yourself and ask questions on LymeNet. Your son is still having major Lyme symptoms; no Lyme literate doctor in his right mind would dare take him off antibiotics yet. They say to treat at least 2 months past the last symptom and be able to get a common cold without a flare in Lyme symptoms. It doesn't matter how much you like this doctor or trust him; taking Dustin off of antibiotics now is asking for him to relapse. As you know, he could get much worse.
Do you have a 504 or the Special Education classification as Other Health Impaired? These programs may help Dustin with his school work next year. My daughter has missed all of her 7th grade year.
I don't know the tip of the iceberg when it comes to Lyme, but I do have some experience now most of us have been diagnosed. I am not criticizing your choice of a doctor; I am concerned that Dustin will only get worse if he doesn't see a doctor who truly understands the limitations of the Lyme tests, the significance of the herx reactions, and all the symptoms, and how to judge when to withdraw antibiotics.
My neice has had Lyme since she was 4. She was misdiagnosed and given the wrong treatment for at least 10 years. She's nearly died many times. I am so thankful her mom found a Lyme literate doctor for her. He saved her life many times. The choice of a doctor can make the difference between life and death.
There are some good doctors in Pennsylvania. I take some of my children all the way to PA for Lyme treatment.
Warmly, Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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