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03/22/2013 06:37 PM

Best tests for congenital Lyme for kids?

nspeedracer
nspeedracer  
Posts: 471
Member

I know, Ive asked before and done research, but wondering whats the consensus with you guys right now?

I have 3 kids and I have Lyme and I know I had to have gotten it before I was pregnant or during the first pregnancy.

They have had one blood test for it, that i had to INSIST on having, but I cant even identify what test it was...Its very strange, its not an ELISA or a blot, just something that says negative, so Im going to have to insist on more testing.

The part that is complicated is that if youre born with it, it may be harder to make and find antibodies...

So what is the best way of testing.

I am not satisfied with "wait for symptoms" Just because I dont see any symptoms doesnt mean anything to me.

As a mother, I NEED to know.

I hope I dont have to pay for 3 Igenex tests Sad

But I HAVE to see for myself, BEFORE its too late and they are suffering. Why wait to see if they suffer?

Anyone with experience diagnosing/testing congenital Lyme?

Is it really harder to detect?

Thanks,

Natalie

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03/24/2013 04:08 PM
nspeedracer
nspeedracer  
Posts: 471
Member

no one?

03/24/2013 04:13 PM
TeeCeeBee
TeeCeeBeePosts: 329
Member

Sorry, I don't have any experience with this. All I know is that I've read conflicting information regarding if it's possible to pass Lyme on to an unborn baby.

03/24/2013 06:58 PM
purpleyogamat
purpleyogamat  
Posts: 3080
Group Leader

nspeedracer,

I'd recommend contacting Lauren (WiscLamLymie).... her 3 girls are congenital Lyme kiddos and she had to go through all that testing. So would be a good resource Smile

blessings,

purple


03/25/2013 12:57 AM
Bettyg
 
Posts: 32240
VIP Member
I'm an Advocate

hi racer,

igenex ... ask about FAMILY DISCUONTS FOR MORE THAN 1 PERSON TESTING!!

3 suggestions:

go to dr. burrascano's 37 pages lyme treatment guidelines; he might have it outlined in there ?? found in LYME FACTS FORUM asa sticky pin at top of posts.

contact dr. nick harris, ownerof IGENEX LAB in calif.

www.igenex.com 1.800.832.3200

call kids. no. 1 dr. charles ray jones, conn.

203 772-1123

fax: 203-772-0682

posting his name/phone nos. since he's in his 7-8th yr. of fighting to keep his medical license for treating long term antibiotics for kids.

hugs/prayers,

bettyg, iowa

LLMD COORDINATOR

****************

Post edited by: Bettyg, at: 03/25/2013 12:59 AM


03/25/2013 10:27 AM
apstarlet
apstarlet  
Posts: 120
Member

I had to pay for 7 igenex tests, it was the best test at the time, 2009...5 kids all had it. It will test IgG and IgM. There might be culture tests out now for it as well. You NEED to get that test done, its the only ammo you have for your kids, otherwise you are a hypochrondriac mom to most MDS.

SmileAngela


03/25/2013 11:43 AM
mysticthecat
mysticthecat  
Posts: 2248
Group Leader

I would Start with the regular western blot ( from a lab your insurance will cover) as Dr J indicates Igenix is not any better for kids

04/05/2013 09:31 PM
mommagg
 
Posts: 3
New Member

Hi natalie,

i sent you a private post because i did not realize i had to join the group to post, i just joined tonight to answer your question because i literally just went through this process over the last three months.

Advanced labs in PA has a very specific culture test that is multi step, very expensive but definitive versus antibody uncertainty in congenital cases.

gg

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