It's been years since I have been on this site but I still suffer from Chronic Neuro Lyme and just had a baby girl at the end of Nov. This baby was a surprise and I had many complications with the pregnancy. I had blood clots and a clot that went to my lung. Oddly enough my lyme symptoms did not seem to worsen while I was pregnant.
My main question is this... should I have the baby tested for Lyme Disease and if so what test is the most accurate. I also have two older dgtrs who were tested about 4 years ago with the Eliza test and were found to be neg. I was bitten in 1987 so I had LD but did not know it with the other two preg. I was only diagnosed about 6 yrs ago.
Any other new moms with LD who would like to email... let me know... it is a challenge being a mom again especially with a Chronic Illness.
Thanks Posts: 215 | From PA | Registered: Feb 2003
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi lynnic86
Congragations on the birth of your new baby!! And hope you are recovering ok too
I am not a mom but thought to share some information on testing that I hope can help. The ELISA test is very inaccurate and misses waaaaay too many positives.
Igenex is a better lab & I would reccomend getting your new baby tested there. Their webb site is www.igenex.com Their phone is- 1-800-832-3200 you could call them & they are very helpful in helping you with any questions you may have about the test.
Its very easy to do. Just keep in mind that any test is not 100% accurate but this lab does read more bands than the average western blot given out by regular GP's ect..
here's a link that may help explain how you can still have lyme & test CDC neg:
All three of my kids have Lyme and coinfections of Babesia, Mycoplasma, Bartonella, etc. My second son is believed to have contracted it from me from the pregnancy or breast feeding process. I guess we will never know the true answer. My first son was bit twice and my third child, my adopted daugther, was bit on a family vacation to Cape Cod. I think I had been bit in 1997 because I had a body rash that was strange. My second son was born in 1999.
I think my immune system held it in place for a while before it could no longer do so. You have to remember too our immune systems are at their peak during pregnancy. So I felt great during the pregnancy. It was afterwards that I got a lot of strange symptoms.
I congratulate you on having a new baby and I feel for you because it truly is not a picnic having this disease and having children to care for.
If I were in your shoes, as soon as possible I would call Dr. J's office in Connecticut (that's who treats my kids) and ask some advice. Also ask for testing. I think they can have Igenex mail you the kit and you can have the blood drawn by a local doc and sent out to California. He is the best children's doc by far for Lyme. He will rule out Lyme and any coinfections. He knows exactly which tests are the better tests to use.
He found the Lyme in my boys through the Igenex WB and it was even CDC positive the first time. He also found the Babesia in one boy and the Mycoplasma in the other. He found the Bartonella in my little girl too. It's so important you go to someone knowledgeable for your baby. You can do the ELISA but it is very unlikely to come up positive and that's why so many people go on to the chronic state.
If by chance the baby has acquired the disease through you, if you catch it early then the child will probably recover ver quickly and have none of the symtpoms for the toddler years and beyond.
I hope this helps. PM me if you need more info. Best wishes.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOW and WOW!
You're back.. and with an itty bitty baby!!!
Congratulations!!!!
So good to see you!!!
I think Hides info was perfect.. so I won't add to it. Just wanted to say a big howdy do to you and yours.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
C O N G R A T U L A T I O N S ! ! ! ! ! ! ! *!)_*!_*!_*!!_*!_*!_*!_!*_!*!_*! C O N G R A T U L A T I O N S ! ! ! ! ! ! ! *!)_*!_*!_*!!_*!_*!_*!_!*_!*!_*! C O N G R A T U L A T I O N S ! ! ! ! ! ! ! *!)_*!_*!_*!!_*!_*!_*!_!*_!*!_*!
Everyone I know who was on abx during pregnancy has had babies that were okay!! Like my little one who is 2 next week. So I would wonder if you were on abx during pregnancy!!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I can't believe you remember me. Hello Tincup. Hope you are well. I tried to be on anti while preg but I was so sick they took me off them. I ended up in the hosp b/c I was so sick and dehydrated. If I were to call Dr. J would he poss. talk to my pediatrician here and see how we can get her tested or do we need to travel to see him?
I was tested thru Igenex myself( and had a pos. WB ) but my LD specialist doesn't see kids so I really don't know how to get the kids tested properly. Any and all help would be appreciated. Thanks again
Posts: 215 | From PA | Registered: Feb 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I would second Nimzovich76's comment about antibodies. Your baby very likely could have Lyme antibodies without Lyme. Because babies inherit antibodies from Mom in order to help the immune system.
So any doctor you speak to, such as Dr. J, I would raise this issue with. What is the best way to test, since antibodies the baby might have antibodies with no Lyme?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I would call Dr. J's office yourself first. If you truly believe in your pediatrician and their dedication to knowing and learning a lot about lyme/coinfections you could get him/her involved. There have been many times I have been in consultation with Dr. J and my kids and a doctor's call comes in. He takes it right a way in front of us and quickly gives the doctor info and what to do. He is amazing.
Usually you won't set up an appointment until proper testing has been done. At least that's how it was for my family in 2005.
Dr. C in Kennet Square, PA is also great I have heard because her own son had it. I don't know their procedure as far as a case like this but you might get moved up on their waiting list since it is an infant.
As far as testing. We all know there is no magic bullet for Lyme/coinfction testing. My advice, being I have gone through it with my three kids, is to have every type of possible test done. With these horrific diseases it is better to be safe than sorry. What you do now, can affect your child for the rest of her life. Don't settle for one test. Do all of them through Igenex and MDL. For me the PCR's never showed anything until my 10th PCR blood test and the PCR never picked it up in my kids. Yet the Igenex tests did. Everyone's situation is different but I am just giving you my experience from what I went through to finally get all of us diagnosed properly.
Best wishes.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
You are not going to beleive this but I just got off the phone with Dr. C's secretary in Kennet Square. In Nov 05 I put my name on her waiting list and they just called to say the dr. could see me now. It is soooo expensive and I just don't know if I can do it now. It's just kind of strange that some of you suggested this dr and then out of the blue they call. Now I don't know what to do?
If anyone has experience with this dr. would you please email me privatly with info. I would greatly apreciate it.
As my husband has said, Maybe I am the best I am going to ever be and I just have to live with it. If this is true I don't want to waste more money on more drs and get no where. thanks again.
Posts: 215 | From PA | Registered: Feb 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
God may have done that setup. It dosent hurt to spend the money for the tests with Dr C better to find out now tham later when it and coinfections have a stronger hold? If it were me I would suck up the money some where and get Lyme WB,and Babesiosis,and Bartonella,HGE test ran in the least maybe mycoplasma test too.
Good Luck
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote: I would recommend a test like the IFA that uses a synthetic antibody to detect lyme in the serum or any other test that doesn't involve you natural antibodies like the PCR, however I don't trust in the sensitivity of the latter.
The PCR is the most sensitive test there is. What you mean is you don't trust the accuracy because you have to have the organism in the sample being tested.
Posts: 649 | From United States | Registered: Dec 2003
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My 2 cents. You should ABSOLUTELY get your baby tested, and I also agree Igenix is the best.
I also agree that you call Dr. Jones office... having been a patient of his for MANY years, I can honestly tell you that he is the best pediatric Lyme dr. He's even done numerous studies on lyme mommies and their babies!
Goodluck to you, and I'll sent up some prayers that you baby is lyme free Posts: 33 | From Lebanon, NH | Registered: Oct 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I would have taken the cord blood or umbilicus I think and sent to Igenex. In any event, testing would be useful though I don't know at what point the baby has an immune system to show on a Western Blot so PCR would probably be better.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I wish I had thought about the cord blood but I suppose it's too late now. I don't think they would save any of that. I really wish I could go see Dr. C but the funds just are not there right now. Maybe later on.
Thanks for all your help.
Posts: 215 | From PA | Registered: Feb 2003
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