lyme pediatrician for my 3 kids

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lymelight3
Regular Member


Date Joined Jul 2006
Total Posts : 151
   Posted 2/10/2009 6:34 PM (GMT -7)   
Hi everyone, its been a long time since I've been on here. I have 3 children with lyme(age 3, 7 and 9). We have been to dr j in connecticut. He was absolutely wonderful. After 6 months of treatment I let their pediatrician convence me to stop treatment. Well, of course I should have continued treatment and we are starting over again. I have another appt with dr j in april, but thought I'd ask if there is any other lyme pediatrician out there. I live in Indiana, but am willing to go anywhere as long as they get proper treatment. My 7 y.o. is seeing a GI doc right now that May be willing to treat(I will find out in another week). The GI doc has done a scope, colonoscopy, pill camera along with other testing, and at this point believes she is sick due to lyme.

I know Dr. J is the best, but also feel he is probably very overwhelmed right now. Any help is appreciated:)

Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 2/11/2009 8:25 AM (GMT -7)   

Hi, I have lyme and I think my 3 kids have it too. Maybe born with it? Mine are 10, 13, and 18. I contacted Turner the Corner Foundation and they emailed me like 4 different doctors that see kids. Here is the website and the email address is on there. They were very friendly and helpful! Oh and I live in Ohio and they gave me 2 in PA.

http://www.turnthecorner.org/contactus.htm


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/11/2009 9:27 AM (GMT -7)   
Amy,
Would you please email me the latest list they sent you. I would like to bounce it against my master list to make sure I am up to date. I'm pretty sure, so; but, would like to know if there is a newly trained ILAD ped. onboard and available for referral.

In the meantime, Lymemom3, you may email me and we can talk about options. Depending on who was on that list fm TTC Foundation, there can be long waiting lists; at least for 2 of them for sure. PA in particular is over a year long list.

I am very sorry that your children are not well. There are answers however, and there is help for your family.

There are two other potential options that may be of service to you for your children. Some of the direction would depend on your childrens' specific needs and helping to match your family appropriately with the right doctor who can care for you and hopefully, then, bridge their treatment with your local physician.

In the meantime, you may both visit www.lymediseaseassociation.org and click on the left column to LymeAid4Kids fund and consider this application if you have not yet done so. Depending on who you see, this can then be submitted to their office if you are approved for a partial or full one-time grant.

Feel free to PM me if the referral would be of help for you.
Blessings,
Sojourner

Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 2/11/2009 11:38 AM (GMT -7)   

I will email you that list.

I haven't had my kids tested yet but my 1 son if very symptomatic. I have a long symptom list. I myself have Lyme too and was CDC positive in Oct 08. My mom also has it. I would like a doctor that believes in congenital Lyme too. I have the Igenex kits here and someone to draw the blood. I just need a doctor to sign the orders. I know many have a long waiting list and I would like them to order the test while we wait. Because my kids are missing a lot of school and my 1 son is showing neurological symptoms.

So if you have any doctors that don't have a really long list, or might test while waiting to get in please let me know. Also if they don't take insurance I am looking for someone with a lower cost. One doctor I called yesterday wants $900 per kid for 1 appointment!

Thanks!


lymelight3
Regular Member


Date Joined Jul 2006
Total Posts : 151
   Posted 2/17/2009 10:33 AM (GMT -7)   
Thank you so much Amy and Sojourner.

Amy........I am so sorry to hear you and your 3 children have lyme. I hope you are able to get treatment for them soon. Have you tried asking your pediatrician to sign an order to get the Igenex bloodwork done. My kids pediatrician is very closeminded to lyme disease but willingly signed for bloodwork to be sent to Igenex.

Sojourner.........We have already signed up for lymeaid and used that with Dr. J. He was wonderful! I am still planning on taking the kids in April, but am in great hopes to find a doctor a little closer to home. (I know it is wishful thinking):)

Thank you both!

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/17/2009 1:22 PM (GMT -7)   
Hi S,

When are you sked. in April. We will be heading there mid-April. Maybe our apptments will overlap.
Feel free to email me. We can chat about pediatric docs for you as well.

I've made a few calls.
Amy, I checked into the one NJ doc on the list; had not heard of them; did make a call and 'gathered'.
Good conversation.

Feel free to email if you are still looking.

Blessings to both of you.
Moms just get it!
~Diana (Sojourner)
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