posted
Would there be a deadline for this? How long is that IDSA panel going to be meeting? I have an LLMD appointment in a month--can it wait that long to get started?
No PCR test. Positive Igenex IFA at 18 months old, Negative western blots, but still some positive bands.
Posts: 311 | From CA | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Seems like it would be important to have the placenta tested in order to prove it is congenital.
I think all evidence has to be in by early April but it could be later in April, not exactly sure.
Maybe call IgeneX and talk to Nick Harris to see what he thinks? Also to ask about the cost and liklihood of getting a positive test with the placenta. IGeneX, Inc. 795 San Antonio Rd Palo Alto, CA 94303
I would think that ILADS would be able to tell you whether it would be useful to get the placenta tested and send the results to the panel if it is positive.
Personally, I would think it would be very useful for the panel to see proof if the placenta tests positive. It might also be important to get the results from a different lab since they may not look at IgeneX as a reliable lab. Of course it is a good lab but I think the IDSA might not agree.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
april 3rd is deadline; elsewhere, i showed 13th but THIRD is correct. *******************
this is great about having the cord; yes, i doo would email ILADS SITE; you can click on LDA icon on left side, and it will have the ILADS site info to click on there if that helps you ok
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posted
Thanks, Terry. I just emailed Igenex. Will call Nick Harris a little later.
Posts: 311 | From CA | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm so sorry to hear this about your baby. I wish you the best of luck and hope he/she is healthy first and foremost.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Janice,
We did the same with our kids...planted a tree after burying the placenta. I think we'd read somewhere that the Native Americans used to do that or something. Thought it was beautiful.
posted
aren't antibodies passed from mother to child, hence a positive test result???
Posts: 123 | From Georgia | Registered: Jul 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I deleted my previous post as I made it just after having gotten up and was confusing this thread with another thread about congenital Lyme. My apologies to anyone I might have confused.
quote:Originally posted by designt1: aren't antibodies passed from mother to child, hence a positive test result???
It depends on what antibodies are being tested for. According to Haren Vanderhoof-Forschner in her book "Everything You Need to Know About Lyme Disease, and Other Tick-Borne Disorders", p. 68:
"IgM is the first antibody produced in response to almost any foreign invasion, generally within about 2 to 4 weeks of an initial infection. IgM levels peak at about 4 weeks and then decline. Although a positive IgM test is thought to suggest a relatively new infection, some patients maintain IgM antibodies for many years, which may be a bad prognostic sign.
A mother's IgM antibodies do not cross the placenta because they are too big, so it is the test of choice to determine if a newborn has Lyme disease."
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Janice, I am so sorry to hear this.
[edited out a bunch of stuff about IgM testing, etc.: I apparently have no reading comprehension today]
In my humble opinion, I would DEFINITELY get the placenta tested via PCR, ASAP. I don't know if your home freezer is the ideal environment (proper average temperature, temperature fluctuations when opening freezer door etc.) for keeping the spirochetal DNA in the proper condition for detection, though (it can break apart into such small pieces it is difficult to detect, for example).
I would call Igenex right away and ask them. Let them know how old it is, and how long it has been in your freezer, etc.
If you want to try and prove congenital transfer, PCR (or even culture growth, but that takes forever if it happens at all - you could do both, maybe?) is the way to go, and you need to speak with an expert at Igenex lab right away.
Good luck to you and your baby. You and your family have my best wishes.
posted
There is also a doctor out near IGenex who is an OBGYN that has been studying the connection that Lyme has with Endometriosis as so many woman(Including myself)have had endo and also have Lyme.
Perhaps he can help you with studying the placenta as he was studying female reporduction organs and trying to see if they have spirochetes in them.
You can pm me for his name.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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A western blot IgG and IGM were done, and they were negative, but they did have some positive bands. Low CD57 also. He was symptomatic, and is doing A LOT better on antibiotics. He seems like a normal 20 month old now.
Nick Harris isn't in today. I'll try talking to him on Monday. I've already emailed ILADS.
Posts: 311 | From CA | Registered: Jul 2008
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posted
Janice - To my knowledge, Clongen is the only lab that does these tests for newborns, but I could be wrong. You may call Clongen directly and they will send you the test kit. We just did it for my sister's baby.
I can try and find the phone etc if you need it - you may pm me if you want more info. Dr J. got me the info.
Good luck and I am so sorry to hear about your child.
[ 02-21-2009, 10:59 PM: Message edited by: luvdogs ]
Posts: 589 | From Rhode Island | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I, too, am very sorry to hear that your baby has lyme.
This is not meant in anyway to diminish the wonderful home you made for your baby but, I wonder, if after you do whatever tests are done if the placenta being buried under a tree would, in any way, make lyme spread to any insects or animals.
I don't know if the spirochetes or cysts would survive in dirt but it's a good question for Igenex, perhaps.
posted
I got a message from Igenex that they usually only do a PCR on a frozen placenta if it is less than 30 days old, but they will make an exception with a request from the doctor. So it sounds like if it is older than 30 days, the test is not as accurate.
Posts: 311 | From CA | Registered: Jul 2008
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