If you can, try to get your doc to extend the abx to 6 weeks, this will buy some time to find a doc that knows about Lyme. (LLMD)
3 weeks can simply drive the lyme into remission, only to come back later, fully disseminated, with nasty symptoms that are much more difficult to treat.
There is tons of information here about Lyme, spend a night (or several nights) reading it, so you have a better understanding of what you are dealing with.
Also, the people that post here have a wealth of information and personal experiences that they are kind enough to share, so that others may benefit.
Please give more info, like symptoms, duration of symptoms, ect. so that we may respond appropriately.
posted
WELCOME, would you like a copy of my newbie package of 112 pages info galore includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 of 112 pages since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain thigns: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR, no infrared SUNGLASSES, etc. and how to use this board!
if yes, please send me a PM, PRIVATE MESSAGE, it's 2 people standing together icon asking me to send it to you. i will send within 1 day of receipt of your pm; thanks
**************************
post in SEEKING DR.; there are NO KIDS LLMDS IN MASS.
there are in conn. and nj!
so in your subject line of seeking dr. show WHICH STATE you want info for?
in body of text show the largest city CLOSEST TO YOU IN "THAT STATE" you chose on subject line ok. we'll help you get to the closest one...
start reading in TREEPATROL'S ARCHIVE OF LYME LINKS! his are specific to topics ... so look for kids info, etc.
we only have one dozen CHILDREN'S LLMDS NATIONWIDE! most in east coast.
-------------------- ~Carey Posts: 3 | From MA | Registered: Mar 2008
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bettyg
Unregistered
posted
welcome to the board; glad you found us.
21 days is NOT enough; need 6 wks at least. i didn't read all the replies above so sorry if info is repeated above.
make sure all symptoms are GONE BEFORE GOING OFF antibiotics! or he could end up like us, and that's a BIG NO NO of health detriment and $$$ !
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daise
Unregistered
posted
Hi Kasash,
I'm glad you wrote back.
There are many adults and children who now suffer from debilitating, painful, chronic Lyme disease due to getting only a few months of an antibiotic.
We hear about this all the time!
Chronic Lyme very often leaves it's mark by damaging the body in numerous ways.
In addition, ticks can transmit other infections, called co-infections. Those are common and will remain with the chronic Lyme.
Chronic Lyme (and co-infections) are expensive and complicated to treat. Some insurance companies don't pay for treatment.
Children with chronic Lyme often can't go to school and can't participate in life with their friends anymore. Treatment is PROLONGED.
These kids have problems developing emotionally. They are disabled. It's hard for them to think. It hurts them to think. They have memory problems. Of course, learning problems. And much more.
When one family member has chronic Lyme it affects the entire family--that's common, we hear about that a lot.
What needs to be determined is this: when did he become infected? In October?
If he was infected in October, it is well past the three month period of "early Lyme" when it is nearly always treatable with 6 weeks of amoxicillan.
It has progressed into a more complicated illness.
Whatever you do, do not see an infectious disease doctor. They don't take Lyme seriously.
Your child DOES HAVE Lyme by western blot. Blot tests aren't run with "early Lyme" when the responsibility of the doctor is to just TREAT, ASAP.
That a blot test came back positive says that his body has made antibodies to Lyme. That doesn't happen for atleast a few weeks or more.
Please take this seriously! When it goes on for longer than 3 months, Lyme then gets complicated. 6 weeks of an antibiotic won't work.
Your son almost probably had Lyme arthritis. It's temporarily in remission.
Only 10% of kids with Lyme get a bulls-eye rash (EM rash.)
Can you get in to see an LLMD (Lyme-literate MD) who is also an ILADS doctor? I would go to the top of this page, to the left menu and click "Support Groups". Then click your state. Ask them for a local doc you can get in to see right away.
_________________
You wrote: "I talked to my neighbor whose son was diagnosed with Lyme last year and she said 3 wks is normal, that kids are small so abx will work more quickly. She's a nurse, so I assumed she knew what she is talking about."
_________________
Sorry, kashash, but your neighbor the nurse is dead wrong. And he may very well be past "early Lyme."
Time and again, time and again, time and again, we deal with this here. Kids and adults get 3 weeks of an antibiotics (whether it's "early Lyme" or longer) and then later--Lyme (and any co-infections) come roaring back. That's the way it is.
Taking a "wait and see" approach is not valid with Lyme.
_________________
You wrote: "Also ped said lyme is very sensitive to abx."
_________________
We have a name for doctors like that. We call them Ducks. Quack, Quack.
There is no truth to what the pediatrician told you.
Lyme is not particularly sensitive to antibiotics. That's why "early Lyme" requires 6 weeks of amoxicillan (doxycycline for adults.)
Lyme is a sophisticated pathogen. _______________
You wrote: "Oh and also, son's leg pain was gone in a day without treatment. Ped thinks the leg pain was not from lyme."
________________
But he's positive for Lyme. It will come roaring back and will be much worse with other signs and symptoms.
In "early Lyme" 3 weeks of an antibiotic ENSURES chronic Lyme disease--unless there is intervention by a determined parent.
I'll explain the medical politics.
IDSA (Infectious Disease Society of America) represents health insurance interests. They claim chronic Lyme disease does not exist. That's bunk.
It's about money, power and politics. It's profits over patients.
ILADS (International Lyme and Associated Diseases Society) can point to 19,000 medical papers and their thousands of patients. These are our hero doctors.
The Lyme controversy has gone on since the 70's.
Connecticut Attorney General Blumenthal has brought legal action in support of Lyme patients. There are 2 bills in Congress for Lyme reasearch: Hilary and Obama support it.
________________
You wrote: "Uh! This is so confusing!"
_________________
Yes, I hear you! There is a lot of information about Lyme and I'm sorry, but please check out the following information.
Go to www.ilads.org, to the left menu, and click on "Basic Information." Print out both pages. The letterhead at the top saying that it's from ILADS is important, as well.
Also on the left menu is "Treatment Guidelines". Click that to Dr. Burrascano's 33 pages of hints for 2005.
A book called, Coping With Lyme Disease, by Denise Lang and Kenneth Liegner MD may be at your library--or you can order it from amazon or a bookstore.
I'm sorry to tell you this, also, but please keep a hawk-eye on the rest of your family, in the event they are infected: were they in the same vicinity as your son when he had a tick?
Please do come back here. Post your questions. We're here to help.
posted
"Ped spoke to infectious desease specialist and they are confident this is the right course of action and that he will be fine after finishing the abx."
This is exactly what I was told when my son was 7 and first had Lyme in 2002. I did not believe them and went to a LLMD for further treatment. At one point my son was considered Lyme free. He continued to have more than his share of GI problems along with anxiety and orthopedic problems over the years. We learned this winter that he has chronic Lyme. He is now 13 years old.
--Judy
Posts: 67 | From Maryland | Registered: Jun 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
So glad you wrote us!
Daise is right on: You REALLY need to find an LLMD for your son.
Here's why, in a nutshell.
1. Treatment isn't long enough. 2. ID docs are usually idiots. 3. ID docs AND GP's have never even heard of "co-infections." Like, HELLO??? 4. Babesia and bartonella are HIGHLY prevalent, especially in your area. Lyme will NEVER get better if you have one or more of them. And you'll be treating with a doctor who's never heard of them!! These require entirely different meds to treat. And we won't even address erlichia, another co-infection. Aaah, if ticks ONLY carried lyme! 5. Some areas of the east have a coinfection rate approaching 60%. It makes lyme much more complex and harder to treat. 6. A non-lyme literate doctor, when his imaginary "treatment time" elapses and your son's not better yet, will ascribe his continuing symptoms to your son's desire for attention, ADHD, go see a child psychiatrist, etc. We have heard it all here -- trust me.
It is worth it right now, no matter the travel involved -- to go find an LLMD and make it a priority to get your child care from an expert!! And read everything you can lay hands on about the disease.
Good luck Mom -- be an advocate!
I always say -- to win the fight against lyme you need to learn more than your average duck, but fortunately -- that is NOT hard to do!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I'm in Texas and my husband was bit by a tick in 2003 and developed a bullseye rash, got treatment within a week from his GP. If it was not for a friend from CT we would not know what we were dealing with. I found an LLMD while he was on the perscription given by the GP and he was then put on long-term antibiotics. He was on abx for over a year, and then I got lyme from him (yes it is sexually transmitted). Long story short we both were on treatment for 2 years and 1 1/2 years respectively. We BOTH had lyme and babesia.
Find your son a LLMD and start reading. That is the only way you will beat this into remission. I spent hours upon hours reading postings and medical archived journals to learn about these diseases. It is very frightening, but your son will get better and things will get back to normal. Kids recover much faster from this than adults. The most important piece of advice is to keep him on long-term abx (over a year), and test for co-infections through the Bowen lab in Florida.
Posts: 101 | From Houston, Tx | Registered: Jul 2003
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