I live in Stony Brook in Suffolk County, NY (the eastern half of Long Island) but will travel to find a LLMD who treats children.
My 9-year-old daughter was tested for Lyme very early in her illness (approximately 3 weeks after she first got sick) by Western Blot and her IgG P41 was positive but all other bands were negative. She was tested by LabCorp (Raritan, NJ).
I have just begun learning about Lyme so I am no expert, but I do know the test is very unreliable and antibodies may take some time to show up. Her pediatrician will not re-test and will not order a more specific test.
My daughter has been sick for 58 days (approximately 2 months). Initial symptoms:
High fever of 104.5 on Motrin, lasted a few days.
Cough that lasted a few days.
Dizziness (holding on to walls to walk)
Given cefinir on day 2 for 10 days and an albuterol inhaler on approx day 6 (she's never had asthma or any breathing problems).
Later symptoms:
After initial symptoms disappeared, she began to feel severely fatigued.
Could barely get up off of the couch except to go to the bathroom.
She says her body "feels heavy like it wants me to stay down and rest but rest doesn't help."
Also had joint pains and muscle weakness.
My 9-year-old dancer/soccer player/active regular kid has been basically couch-ridden for two months.
Symptoms two months later:
After two months of rest she can finally sit up and do a craft or play on the laptop, but she still gets easily wiped out by the smallest amount of activity.
The joint pains and muscle weakness have stopped but her body still feels "heavy."
Her pediatrician has been convinced since the first day that this is just viral and he will not re-test for Lyme.
No other diagnosis has been found. We have been to a pediatric infectious diseases doctor, a pediatric rheumatologist, a pediatric cardiologist, everything else is negative, including EBV (tested twice), toxoplasmosis, CMV, tularemia, thyroid normal, diabetes negative.
Her mycoplasma pneumoniae IgG was high at 796 but her IgM was negative. The doctor thought this was irrelevant.
Any help would be greatly appreciated. I don't understand why if one band is positive for Lyme she is still considered negative for Lyme.
Posted by t9im (Member # 25489) on :
Hi HAVCMOM:
I will be sending you a PM with MD's. The diagnosis is part of the controversy, initially band 41 with symptoms was fine then they changes the diagnostic criteria.
41 indicates a spirochete bacteria, but is not specific to the Lyme borrelia.
I suggest when you have a change to view the videos and read the links below.
The Lyme Controversy:
It's amazing there is a controversy to this insidious disease and I've found it easiest to show a couple of u tube video's on the controversy.
He is a saint and I show this to help illustrate how MD's have been prosecuted so normal MD's shy away from doing anything but following the flawed IDSA guidelines.
Posted by hopingandpraying (Member # 9256) on :
You need to get your dear daughter evaluated and treated by a LLMD (Lyme-literate doctor) and have testing done through IGENEX Labs..
The best Lyme pediatrician is in CT.
PM sent with info for CT (I don't know of any on Long Island).
Posted by nutsforcrabs (Member # 27180) on :
I have a wonderful LLMD in NY. I will send you a PM with more details.
Posted by Hopeny (Member # 35984) on :
It may take some time to get into see a doctor. In the meantime will your pediatrician test for the Lyme co-infections Ehrlicia, Anaplasmosis, Rocky Mountain Fever and Babesia? You can do these through Labcorp or Quest for the time being, My DD9 went through a very similar situation. The symptoms went away after 6-8 weeks but came back over the course of two years. I will PM you doctor information and also a bulletin board that is focused on children with Lyme
Posted by Lymetoo (Member # 743) on :
Ehrlichia is very dangerous and must be tested for right away.
Posted by Hopeny (Member # 35984) on :
Also to add, there is a certain IGG level which indicates active Mycoplasma infection. The test I am familiar with uses a different scale so I can't comment on your number but its important to be aware that IGG can indicate active infection. Most pediatricians will not be aware of that. Myco is also a Lyme co-infection and can cause pain as well as respiratory issues.