In the meantime, I'd like to get him tested for co-infections. Is there a LAB I could just go to? Could Dr. J. order the tests ahead of time....etc., etc.
[This message has been edited by ElizabethP (edited 03 February 2005).]
I live in the St. Paul/Minneapolis area and had a really hard time finding a lab to draw the blood.
Quest Diagnostics has labs all over the country and they did the blood draw for us.
Most labs will send a test kit to you.
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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.
you may have to wait months for an appt..but only 3 weeks for results ot come back, and then he''ll start the meds until you come in...also if you can take a cancellation on short notice, like a day or two , let them know, and they'll put you on that list as well..
if you can't get through fax them your info adn they'll call you: 1-203-772-0682...
he's worth it..cured both my kids! I wish I could go to him!
Lisa
[This message has been edited by lla2 (edited 23 January 2005).]
[This message has been edited by ElizabethP (edited 03 February 2005).]
Welcome to this 24/7 support group board!
Here's TREEPATROL's and tincup's combination newbie links. Read the important stuff 1st to prepare you for your child's dr.
Print off the links then check them off as she reads as she could spend several months
reading all of this.
Print & read Dr. Barrascono's info first. She will come back to this often.
Betty G., Iowa
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Conflicts in Lyme
How to Search Courtesy of Danq
TC LymeNet Links for New Members
Newbie's Lingo
Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M
Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B
Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!
Labs
MDL
Igenex Labs
Q-RIBb
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests
Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)
Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction
Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Legal Help
Legal Help
Legal Help
Legal Help
Legal Help
GreatSite
MedicalDictionary
Wealth of Info
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1
Part1 Long over Due
Part2
Part3
Part4
Part5
Part6
Part7
Pregnancy
Pregnancy?
TC Link Pregnancy
Insurance SS Disability Help Minoucat Bunches of Goody's
Herbs Be Careful
HerbsCancer Center
Neurologic Lyme
Neurologic Lyme
Neurologic Lyme
Sherry
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