LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » 2011 ILADS Conference--Gestational Lyme--my notes

 - UBBFriend: Email this page to someone!    
Author Topic: 2011 ILADS Conference--Gestational Lyme--my notes
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here are my notes from Dr. J.'s talk (world famous pediatric lyme specialist) at the Toronto ILADS conference the other day.

2011 ILADS Conference, Toronto, Canada

Pregnancy & Tick Borne Diseases: Gestational Lyme

Dr. J. 10/28/11

Impulsivity is an earmark of children born with lyme. Lyme is a multi-system disorder. It can wax and wane and change. It likes collagen (valves--like heart valves, etc.), nerves, and joints; it is almost always tick borne.

HIV, CMV, any infection in the mother can be transmitted to the fetus.

If lyme is transmitted, you will see severe hypotonia (floppy baby), child will be irritable, tire easily, sensitive to light, noise, skin. The hypotonia will cause trouble sucking due to the lips being floppy. This can improve as time goes on. 30% of these children will have developmental delays.

Tissue PCR biopsy is more likely to be positive rather than a test of bodily fluids (blood, urine, spinal fluid, etc.). Test placenta and foreskin remnant.

Some of these children are classified as autism spectrum early on due to their failure to progress. These children do NOT experience regression as is often seen in autistic children. If antibiotics help them, it points to lyme as the true diagnosis.

He described 2 patients. One little boy ran around his office. He had never spoken. It was doubtful that he could understand what others said. But Dr. J. noticed that the boy made good eye contact with him, which autistic children will not do. He took his face in his hands and said to the boy, I am going to unlock your brain. The next time the child returned, he ran to Dr. J., put Dr. Js hands on his face and said, Thank you for unlocking my brain.

The other boy had committed a long list of crimes, the most serious of which was attempted murder of his mother, and was about to be removed from his home due to his crimes. The boy announced that nobody was taking any blood from him. Dr. J. gave him a choice--either give blood or have a wrestling hold put on him. He put the hold on the child lightly and the child asked for him to stop. Then, he jumped into Dr. Js lap and hugged him (while Dr. J. patted him down for contraband) and cried profusely for about 2 minutes. When asked why he was crying like this, the little criminal said, Nobody has ever given me a choice before! This boy was diagnosed with lyme thanks to the persistence of his mother.

Treating the pregnant mother: There is less than 1% transmission of the illness if the mother is treated with 2 antibiotics during the pregnancy; 25% rate of transmission if she is treated with just one antibiotic; and 50% rate of transmission if she is not given antibiotics at all.

It doesnt matter what trimester the mother becomes infected. These are the statistics.

A baby born with babesiosis is in really bad shape. He told of one with heart and numerous other serious problems who was given numerous transfusions at birth, plus atovaquone and azithromycin and is now well. It took 1 week to see great improvement.

Some medications he suggests for the pregnant mother include 1,000 mg amoxicillin every 8 hours for months, also mentioned IM (intramuscular injections), ceftriaxone (? not sure of this--something that started with ceft but not ceftin), etc.

The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed.

He mentioned that a lab known as Advanced Laboratories can now culture for the lyme bacteria. Western Blots test only for exposure, so this is a much better test.

He said that a father can infect a mother. In in vitro fertilization, a father infected the embryo, but it was not part of a study, just anecdotal.

He quoted Dr. H., If the mind doesnt know, the eyes dont see to explain how lyme can be missed in these children so that they are misdiagnosed.

One month of amoxi should be given to the mother if she is bitten while breastfeeding.

To treat bartonella in children, give them zith and/or Bactrim, ciprofloxacin in an older child.

Antineuronal antibodies can be found in infected children. If they are found, treat the child with antibiotics. The child can have strep antibodies also. He uses various meds including IV gamma globulin, if needed.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
TF, again, thanks for the fabulous notes. I saw the entire session but could not write very fast.

Great for anyone with children in their lives. However, this was not just about kids.

I learned some things about my past behavior - decades ago - my brain just would not work right and I just thought I was stupid and lazy, no matter how hard I tried.

What a dear, dear man and such a dedicated doctor. His anecdotes were charming and so to the point.

Thank you for unlocking my brain.

Wow ! What better gift than that, eh? How good if all patients, all ages, could have access to doctors this good?
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

Icon 1 posted      Profile for lou     Send New Private Message       Edit/Delete Post   Reply With Quote 
I thought this gave hope to people who wanted to have children but kept putting it off for years waiting until they had no symptoms left.
Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745

Icon 1 posted      Profile for bcb1200     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks TF. Wife has mild symptoms and tested positive and we are trying for another kid. She is on Dr. J's pregnancy protocol.

**edited dosages**

Glad to see the risk of transmission is 1% with this.

Also good info on breastfeeding while on ABX. I was told NO BREASTFEEDING PERIOD...but I was wondering why it wouldn't be ok if the Mom was on drugs.

[ 10-31-2011, 05:34 PM: Message edited by: Lymetoo ]

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3124 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Marcie
LymeNet Contributor
Member # 10070

Icon 1 posted      Profile for Marcie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for the good notes. My daughter is seven months now and doing so good, no signs at all of the symptoms mentioned above. I was treated with one abx during pregnancy, looks like I should have been on two. I did not breastfeed, interesting that Dr. J says it's okay.

I presonally did not want to take the risk, but that was my personal choice.

Really good info here!

Posts: 323 | From Michigan | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
oct09lymie
Junior Member
Member # 25934

Icon 1 posted      Profile for oct09lymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for posting this for all of us. I'm staring my 3rd trimester and get all kinds of grief EVERY visit to the perinatologist for being on abx (azith and Omnicef ). **edited dosages** It's hard to tough through those chastize sessions, but it's nice to be reminded that what I'm doing IS THE RIGHT THING.

Also, I will be testing cord blood and breast milk through Igenix. I'm having a girl, so no foreskin remnants.

***Anything else I should do?

[ 10-31-2011, 05:35 PM: Message edited by: Lymetoo ]

Posts: 3 | From Seattle | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dr. J says a tissue PCR biopsy is much better than testing bodily fluids like cord blood. He recommends a tissue PCR biopsy of the placenta.

This is much more likely to give you a positive test if lyme is present. Lyme likes to hang out in tissues, not bodily fluids.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
oct09lymie
Junior Member
Member # 25934

Icon 1 posted      Profile for oct09lymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you so much!!!!
Posts: 3 | From Seattle | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
philly78
Frequent Contributor (1K+ posts)
Member # 31069

Icon 1 posted      Profile for philly78     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks so much for this TF. Reading the statistics on transmission has put my mind at ease a bit since I am currently treating with two abx.

--------------------
When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

Posts: 1000 | From PA | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
MamaBear11
LymeNet Contributor
Member # 25116

Icon 1 posted      Profile for MamaBear11   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Very interesting. I was infected 16 years ago but only diagnosed last year, of course long after I had both of my kids.

My two year old son has developmental delays. He has been diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder, and we currently suspect Apraxia and/or Motor Processing issues. He is a VERY busy boy. Doesn't stop moving from the moment his feet hit the floor in the morning until I put him in bed at night. I have often wondered if he has Lyme. But I can't worry about that until I get myself to a better functioning place.

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

Posts: 310 | From Northeast | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
17hens
Frequent Contributor (1K+ posts)
Member # 23747

Icon 1 posted      Profile for 17hens     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by TF:
A baby born with babesiosis is in really bad shape. He told of one with heart and numerous other serious problems who was given numerous transfusions at birth, plus atovaquone and azithromycin and is now well. It took 1 week to see great improvement.

TF, did he say ONE WEEK? Sounds amazingly fast, that's all. I hope it was 1 week for the baby's sake!

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

Posts: 3043 | From PA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
To order a DVD of this, other individual speakers - or the whole set:
----------------

http://ilads.org/ilads_media/lyme-disease-videos/

All ILADS Lyme Disease Conference Videos
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
In one week there was great improvement. It doesn't mean that was the end of antibiotic treatment.

Dr. J never said how long the baby was treated, total treatment.

I was truly amazed when he described this poor baby and said how well the baby was after 1 week. It was something!

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Putting this back on page one for the last time in case some people missed it.
Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
susieq2
Member
Member # 30451

Icon 1 posted      Profile for susieq2     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by MamaBear11:
Very interesting. I was infected 16 years ago but only diagnosed last year, of course long after I had both of my kids.

My two year old son has developmental delays. He has been diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder, and we currently suspect Apraxia and/or Motor Processing issues. He is a VERY busy boy. Doesn't stop moving from the moment his feet hit the floor in the morning until I put him in bed at night. I have often wondered if he has Lyme. But I can't worry about that until I get myself to a better functioning place.

MamaBear,

I sincerely hope that you start feeling better soon.

However, treating your ASD child as soon as possible (if he does have lyme) could mean complete recovery for him.

My daughter, also with ASD was not found to have lyme until she was about 6 1/2.

She is doing so much better now and parenting a mostly normal kid is easy, easy compared to her pre-treatment days.

Posts: 59 | From Seattle WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.