posted
hi, I think my daughter might have lyme disease, she has been sick for over a year, and has been tested for everything imaginable (well, not for lyme though) shes been tested for celiac disease, Leukemia, thyroid, diabetes, you name it, the doctors are puzzled, she experienced har and weight loss, swollen glands, and her symptoms seemed to come and go, like she would get really bad for several weeks, no energy, not eating, etc... and then slowly would start un uphill trip, sleeping through the night, return of appetite, she also has developed an eye blinking problem, like a tic or something, along with alot of other unexplainable things. I was posting on a different forum, that deals in neurological problems, trying to figure out what might be wrong, and some one suggested the possiblity of lyme desease and sent me here. I know very little about lyme disease, but i have learned the basics in the past 2 days. We live in Ne. and have contacted a doctor in springfield mo, who is experienced in lyme disease. so she will be going there at the end of April. I am trying to learn more about lyme disease in young children, I am curious what she will have to go through in treatment if this is what we are dealing with, is it always cureable? from what I understand it takes a long time... also, can you develope other conditions from the Lyme disease that may not be cureable? Any info that you can give on children, espesially her age, or even personal stories, anything, thanks.
Posts: 2 | From Nebraska | Registered: Mar 2005
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Your post sounds all too familiar to me and my family. Lyme disease is (supposed to be) diagnosed clinically but unfortunately, most physicians don't consider it in their differential diagnoses.
Your daughter will soon be in very experienced hands, and I wish the best for her!
Posts: 703 | From Almost Heaven | Registered: Aug 2004
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no, I havent, didnt even know he had a website. Its really ironic, I have taken my son to him before, for an ear infection (about 3 years ago)but didnt even know he specialized in Lyme disease (or know anything about lyme disease then!)So, I really liked him then, he was great with my son. We actually just moved here to Ne. 2 months ago from Springfield, all my family is still there. Thanks alot for the website!!
Posts: 2 | From Nebraska | Registered: Mar 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Candy,
Wow, did you happen to land the right Doc ! Many of us on here received the same run around trying to get answers to our sick children.
I would expect that your little one to be on abx for some time, if she's been infected for a year. Lymies are notorious for getting worse on abx initially then slowly get better.
The initial abx creates a huge die-off of bacteria which the body labors to get rid of. This is called a herxheimer reaction, or herx. Make sure she takes a good quality acidophilus to keep down yeast. The abx kills all bacteria in the stomach, good or bad.
My son had lyme for about 3 months before diagnosis. He's been treated for about 4 months so far, with several more months a real possibility. Lyme treatment is a marathon, and not a sprint.
Having DR. C in your corner is the best thing you ever could have done for your daughter.
As far as her having lyme, I'd say there's a very good chance that she has it. She seems to have some of the classic symptoms.
It isn't easy to treat, the road can be rough, but children are resilient. I wouldn't be surprised at all if in time, she's the normal child you remember. Keep us posted, and feel free to ask away any questions you may have.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
My 3 1/2 year old daughter has had Lyme since last June when I spotted the bull's-eye rash.
It sounds like you found an LLMD so you should be in good hands.
My daughter is on two antibiotics and the plan is to keep her on them until she is symptom free for two months.
She had the classic "herx" reaction when she first started the abx, but they got less severe, less often and didn't last as long.
This month she had bit of a set back. She was getting a fever, headache, fatigue just about every week.
Her LLMD switched meds and she seems to be doing well again.
I've been told the outcome is good with children.
My advice is to read and understand as much as possible because you will need to be her advocate. I had to read things several times to understand them.
posted
Hi The doctor feels I gave my son Lyme disease, he is 10 years old , I never really thought about all the ear infections he had when he was young, we thought he was ADHD and Tourettes, to find out Lyme can cause tics, he has alot of behavior problems, can not sleep at night without Melatonin, ( works great)he started to have seizure activties with vomiting, we went through that for almost 3 years until the doctor realize it was Lyme, I went to Hershey medical center, they did EEGs found nothing, we went to Childrens Hospital in Philly they called it episodes, what's that? now he was vomiting once a week, like every Wednesday for the past month , not sure if we got rid of it yet,plus we took a stool test and found he has alot of BAD Bacteria in his system, we are now working on clearing that up.The schools do not believe that Lyme causes all the problems he is having, plus right now he talks talks talks.so they keeps him in trouble. I have a big folder on everything this kid has done, but I am glad to know what it is, none of the doctors could tell me, except for one, and this doctor has Lyme disease too. He thinks it is an epicdemic in our area. I would get your child tested but you have to be sure on a good lab, and doctor.
Posts: 43 | From Hanover Pa USA | Registered: Nov 2004
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posted
Hi The doctor feels I gave my son Lyme disease, he is 10 years old , I never really thought about all the ear infections he had when he was young, we thought he was ADHD and Tourettes, to find out Lyme can cause tics, he has alot of behavior problems, can not sleep at night without Melatonin, ( works great)he started to have seizure activties with vomiting, we went through that for almost 3 years until the doctor realize it was Lyme, I went to Hershey medical center, they did EEGs found nothing, we went to Childrens Hospital in Philly they called it episodes, what's that? now he was vomiting once a week, like every Wednesday for the past month , not sure if we got rid of it yet,plus we took a stool test and found he has alot of BAD Bacteria in his system, we are now working on clearing that up.The schools do not believe that Lyme causes all the problems he is having, plus right now he talks talks talks.so they keeps him in trouble. I have a big folder on everything this kid has done, but I am glad to know what it is, none of the doctors could tell me, except for one, and this doctor has Lyme disease too. He thinks it is an epicdemic in our area. I would get your child tested but you have to be sure on a good lab, and doctor.
Posts: 43 | From Hanover Pa USA | Registered: Nov 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
dr charles jones in ct is the countries best pediatric lyme specialist..he 'cured' both my kids who were very bad off...
he's a godsend...another choice for you , that's all. People come from all over hte world to bring their kids to him. He works 7 days a week.
his phone number is: 203-772-1123.
Ronald mcdonald house nearby in ct puts up kids and their families who go to see him also, so you don't have to worry about htat expense...
he's wonderful and has seen something like 8,000 kids with lyme and coinfections....my kids were so bad off, and he brought them totally to well again. they are doing great..im sure they're are many on here who will sing his praises. do a search on here and you will find plenty of great posts
I"ll keep your daughter in my prayers. Lisa
[This message has been edited by lla2 (edited 30 March 2005).]
[This message has been edited by lla2 (edited 30 March 2005).]
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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