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. J�s 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. J�s 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 doesn�t 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 doesn�t know, the eyes don�t 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.
Posted by Keebler (Member # 12673) on :
- 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? -
Posted by lou (Member # 81) on :
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.
Posted by bcb1200 (Member # 25745) on :
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 ]
Posted by Marcie (Member # 10070) on :
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!
Posted by oct09lymie (Member # 25934) on :
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 ]
Posted by TF (Member # 14183) on :
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.
Posted by oct09lymie (Member # 25934) on :
Thank you so much!!!!
Posted by philly78 (Member # 31069) on :
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.
Posted by MamaBear11 (Member # 25116) on :
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.
Posted by 17hens (Member # 23747) on :
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!
Posted by Keebler (Member # 12673) on :
- To order a DVD of this, other individual speakers - or the whole set: ----------------
All ILADS Lyme Disease Conference Videos -
Posted by TF (Member # 14183) on :
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!
Posted by TF (Member # 14183) on :
Putting this back on page one for the last time in case some people missed it.
Posted by susieq2 (Member # 30451) on :
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.