My daughter was seen by Dr. J (LLMD) in SC who diagnosed her with Lyme. She has had severe joint pain (along with other symptoms) since July-hip, knee, ankles, wrists, jaw-had to stop all sports and PE and is missing a lot of school due to severe pain and fatigue.
IGM Igenex positive CDC negative
31++++ (I heard that was pretty rare) 41 ind 83-93+
IGG Igenex negative CDC negative
39 ind 41++
Dr. J says definitely Lyme disease, but that he is not a pediatrician. My daughter is 11. He "needs" a pediatrician on board with treatment.
Pediatrician and Pediatric rheumagologist don't believe she has Lyme because labcorp western blot came back negative. Pediatric rheumatologist called her "pre fibromyalgia", told her to get exercise every day and learn to deal with stress better so she can get a better sleep and feel better.
Said she has a number of girl patients of the same age with this usually girls who do sports and who are high achievers.
She says if she learns to deal with stress better and gets more sleep she won't hurt anymore.
I asked her what she made of Dr. J's report and the labs and she said that she doesn't believe in Igenex and sent us to the hospital lab at MUSC for a "confirmatory" western blot.
I told her I was very concerned because my brother has ALS/Lyme and is in a wheel chair because he had Lyme and was never treated.
She agreed to call Dr. J. to talk with him but specified that she has a responsibility to adhere to the CDC as far as interpreting labs and treating Lyme.
Any advice on how to get my daughter treated? Can I as a parent insist on treatment without the involvement of a pediatrician?
Any thoughts / advice appreciated. Going crazy while my daughter is begging for "help". The only problem is that I can't give her what she needs - the proper medication. Thanks.
Posted by Geneal (Member # 10375) on :
First I am going to pray for you and your daughter.
Next, I would hunt down a pediatrician who is willing to
Speak with Dr. J with an open mind and not one with a CDC handbook in their hands.
When I brought my children's Igenex results to their pediatrician, she
Came into the patient room with the CDC handbook.
I knew this wasn't going to happen for my children.
I am blessed as my LLMD (who wasn't treating peds at the time)
Agreed to take on the care of my babies.
My children's pediatrician told me that "many" of her patients
Had the same complaints as my son and daughter and that this was "normal" for their age.
I told her what may be normal for other people's children is NOT what is
Normal for mine. I told her that these were my children who came from my body,
And that their complaints and symptoms were anything but normal.
I also told her that she probably was missing many cases of potential Lyme due
To that way of thinking. I don't think she likes me anymore.
See if Dr. J can recommend someone to work with you.
If not, post in Seeking Doctors and see if someone knows someone who can help.
Hang in there. Go after it for your child.
I am with you 110%!!!!!
Hugs,
Geneal
Posted by TerryK (Member # 8552) on :
Of course the test looks positive for lyme. I had the 93 band on IgM too and my doctor said that one is highly lyme specific.
Can you possibly have your daughter see Dr. J. in CT?? He is a pediatrician.
I wouldn't waste my time with the doctor who says she is obligated to follow CDC guidelines. She probably actually means IDSA guidelines. Even if you had CDC positive tests, it's unlikely she would accept treatment of your daughter with the correct dosages or long enough. Was your daughter tested for co-infections?
As someone who has had untreated lyme since childhood I think it is critical to have your daughter treated no matter what you have to do.
The pre-fibro diagnosis is BS. I was diagnosed with fibro and the things they are telling you will help do not help in the long run. At least they did not help me.
If you can't go to see Dr. J in CT, then try to find another LLMD who would be willing to treat your daughter without a pediatrition on board.
You could also check with local groups to see if anyone knows of a doctor who would help you.
Good luck.
Terry
Posted by NHgirl (Member # 13585) on :
Geneal, Thank you for responding!
I have been sitting here waiting for someone.
Was your LLMD ever a pediatrician before agreeing to treat your children?
I'm thinking I might be able to convince Dr. J to treat without the ped. involved.
I do remember him saying, "Ultimately you are the parent" at one point when I was aking him about resistance from the ped. Does that sound like an indication that he might be willing to do it upon my insistance?
Are your "babies" better now? I hope so!
Thanks for the prayers! I pray for all Lymies on here every night.
Posted by NHgirl (Member # 13585) on :
Terry K, Thank you for the reply. I am on a mission.
I agree with the pre-fibro being BS. My daughter tried to exercise for 5 minutes today and was crying after 3-4 minutes of brisk walking.
I will do whatever I have to do. Thanks for your suggestions.
Posted by lymednva (Member # 9098) on :
I agree with Geneal about trying to get in to see Dr. J in CT. He's the best Lyme pediatrician around.
Decades before my dx, but when I was having symptoms I had a doctor tell me I needed to learn to handle stress. A lot of good that did!
I say it's time to find a new pediatrician, but first I would work on finding someone who will treat your daughter.
I fired several of my doctors after they were completely clueless in my dx and even went so far as not notifying me of unusual test results, then tried to tell me they had called me! Good luck!
Posted by Geneal (Member # 10375) on :
Actually, my children are still under treatment.
They are better though.
My LLMD is an allergist with a family practice.
He contracted Lyme and now treats it officially in adults and children.
I know that had he not treated, I would have figured something out.
I was and still am very aggressive about their health care as well as mine.
If I think there is any chance of curing them by treating them aggressively
And early, then by God that is what I am going to do.
I just wish mine were old enough to swallow pills.
They hate liquid zithromax and flagyl.
Hugs,
Geneal
Posted by timaca (Member # 6911) on :
The other thing you should test your daughter for is viruses.
Do some reading at www.hhv-6foundation, and test your daugther for EBV and hhv-6 at Focus diagnostics lab.
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