Hi Elizabeth,Once you get ahold of his office staff (keep calling - redial, redial, redial - until you get through to a live person), set up an in-person appt with Dr J. Unless he has a cancellation or your son's case is urgent, your appt will probably be set up 3 months from now.
Once you have a in-person appt scheduled, ask the staff for a phone consult with Dr. J. Once they set that up for you, they'll send you a packet in the mail with papers that you must fill out and send back to them before the phone consult. Include medical records, photos, symptom charts, anything and everything that you might have gathered so far re: your son and include them in the packet you send back to Dr. J's office.
If you possibly can, let them know that you're available for a phone consult ANYTIME of day or night. You'll get a faster consult with him that way. At least we did.
Dr. J has dedicated his life to his work. Many have said that he works 7 days a week even though his office hours are only listed as being M-F. I know from experience that he works nights as well. He's amazing, that man.
I've had the most luck calling in the afternoon an hour or two after they get back from their lunch break (break is btwn 12-1:30pm EST).
Once you're on the phone with Dr. J, he will listen carefully to everything you have to say and will ask his own questions. The tests he'll order will be based on what you tell him, so be as accurate as you possibly can about your son's symptoms.
Since you're on the east coast, I'm not sure if he'll use MDL labs or have your son's bloodwork sent to IGeneX. Whatever the case may be, trust that he'll guide you along and point you in the direction he feels is appropriate and necessary for your son...and probably for you, too. I don't think there's a state in this country that he isn't familiar with, so he'll have plenty of suggestions on how to get your bloodwork done.
About how to connect your doctor up with him? Consider this very carefully before you try to hook them up. Make sure that your pediatrician has an open mind and is willing to speak to Dr. J and hear him out. Although Dr. J is willing to do anything it takes to help each and every child, his time is much better spent helping his children than trying to reason with doctors who are "lyme deaf".
This should help you form an overall picture of how his office operates. Of course, as with anything, there are always exceptions to the rules, so perhaps when his (very knowledgable) office staff listens to your son's story, you may be able to get a phone consult very quickly.
Patience is not one of my strongest traits and never has been, but I've had to learn some harsh lessons in it since my daughter came down with Lyme/Bartonella. I think I've advanced from wanting everything taken care of YESTERDAY to barely being able to hold out for things to be taken care of TODAY. Yet still, I end up having to wait for things to be taken care of TOMORROW because that's just the way it is with Lyme.
My heart is with you and your son. I hope I've been of some help.
UBBFriend: Email this page to someone!
Printer-friendly view of this topic