posted
After 2 years of trying to get a regular pedi to treat our son's lyme (7 bands +), after every test imaginable, seeing more "ologists" than I can count, we have an appt with Dr. J in May.
My question is... We are on our 2nd pedi since this started. Really like the 2nd pedi, (don't want to leave) but doubt he'll be onboard with Dr. J.
The pedi and I have very good communication, hoping that despite our opinions, we can continue to see him. What would you do? Will Dr. J treat without our pedi on board?
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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posted
It sounds like you should leave the pedi's in the dust!
I don't think they would know anything about Lyme beyond the typical, "old-school" protocols of 30 days of Doxy.
Just b/c yer son is a child...don't necessarily include your pediatrician.
Get the REAL treatments you know you need. Wherever you can get it.
I finally got REAL tx (IV Rocephin & oral combinations.)from a PCP in Las Vegas. After 2 years of "so called" LLMD's and painful oral abx.
LLMD's R good for knowing what abx to use and the proper dosing schedules....but then again...SO DO ALL OF US HERE ON LYMENET.COM
LLMD's are mostly paralyzed w/ fear to do anything aggressive or REAL.
You need to get on top of your son's infection(s), before they progress into something that will cause permanent damage.
Youre lucky u got the Dx when he was young. I didnt get mine until I was 36 y/o. I had symptoms as a child of 5 or 6 years of age now that I look back on it.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My children's pediatrician looked at their Igenex results
Which said CDC negative and said "oh good. They don't have Lyme".
She didn't know about band 23-25, 39, 83-93.
Then when I pointed out that yes they were CDC negative,
But still were symptomatic and had Lyme specific bands,
She pulled out her CDC handbook.
I stopped her right there.
Said I didn't have the time or the energy to "educate" her on Lyme disease.
She kind of made an inference that maybe I was seeing my symptoms
In my children (yes the m word).
My reply was swift, but deadly.
I told her if she ever made an inference like that to me again,
Especially after not knowing anything about Lyme,
I would slap a lawsuit on her so fast it would make her head spin.
I left.
My children still see her for the every day run of the mill issues.
She doesn't mention Lyme.
Has never question if my children are being treated.
She doesn't mention it and I don't either.
In fact, the day we were there to talk about Lyme disease treatment,
There was a child in the next room getting an engorged tick removed.
I should also add that the pediatrician felt that my
Daughter's complaints of joint pain, fatigue, shakiness, etc
Were normal for children her age.
Since I can't afford Dr. J, I am not sure what type of ancillary support
Your children may need with his care.
If it is just for the normal, everyday type of stuff,
I would stick with whatever is working for you right now.
You will know if and when you need to change doctors.
My pediatrician was in the delivery room for both births of my babies.
Don't have any particular allegiance to that other than
She has known both of them her whole life.
That helps sometimes.
Also keeps me from having to remember full histories
Including drug allergies, my son's hole in his heart he was born with, etc.
See what Dr. J needs you to do.
Then decide.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I'd stay with the ped and use if needed... as needed.
posted
Hmm, with any type of specialist, they simply inform the primary care what they are doing.
However, it is the specialist who takes care of the problem for the patient and determines the treatment. The PCP takes a back seat.
perhaps this method would work for you. Trouble is, we don't think of the LLMDs as specialists. But essentially they are.
If your son had a heart condition, the cardiologist would treat it, and the pediatrician would treat the everyday stuff.
Just assume your pediatrician cooperate with Dr. Js treatments. If not, cross that bridge when you come to it.
Am I too simplistic in that approach??
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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