posted
Hi everyone, I have read many of the lyme and pregnancy posts but I either need more information, clarification, or a hug at this point. I am a mommy to a 2 1/2 year old girl. I was infected with Lyme at 8 months pregnant and treated for 30 days with 1500mg of Amoxil and told that it would not pass to her through the placenta or breast milk and that we would both be fine... As of today I have multiple co-infections and am being treated by Dr. W for stage 3 Lyme. He believes I could have passed it to her and we are going to our local children's hospital to an infection disease doctor to begin the testing process in a few weeks. Their research shows that it does pass so I may not be fighting an uphill battle with them. I am really, really scared at this point. I am worried first that my little baby has Lyme and that she is so small that the test won't show up. They tested her at two months old and she was negative. Dr. W says that her body would not have recognized it due to her young age. What signs am I looking for in her? Although she is a talker she can't really express to me what hurts or anything like that. If she got it from me will she fight this her entire life...please tell me no. The guilt of this makes me so sad and worried about her future. Any help, or hugs would be appreciated!
Posts: 183 | From Texas | Registered: Nov 2007
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posted
Hi Do not worry. Two of my friends had the same thing and their kids are fine. Focus on getting better yourself so you can care for your new baby. I would keep testing the baby and watch for symptoms so you feel better....you will both be fine.
Posts: 422 | From CT | Registered: Oct 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I would avoid the infectious disease duck at the children's hospital, especially with an attitude like that one.
The best advice can be gotten from Dr. J in CT. He's the pre-eminent Lyme pediatrician int he country. Go to Seeking a Doctor for more info.
Hopefully one of our mom's of young children who have Lyme will be along soon to tell you more about symptoms to look for.
I believe I passed it to my now adult children. I see symptoms in each in different ways, but two of them are for the most part healthy.
Of course back then no one had heard of Lyme, especially in OK!
Welcome to Lymenet and good luck in your info gathering.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Don't Worry? I wish that someone had only known that I had lyme disease while I was pregnant. I wish I had known so I could have begun treatment for my child then instead of twelve years later when there are so many problems. I have a number of friends that are mothers to children with lyme and they ALL wish they had know when their children were small. I have to say, it seems to be difficult to notice as many of the symptoms when they are young. Not sure why. I wouldn't be scared though. Watch your child carefully and keep a log of everything. Years from now you may be saying, ahhhh. thats what that was as I do now.
Posts: 547 | From Maryland | Registered: Mar 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Don't mean to freak you out but Lyme has been found in placentas.
You should be under a llmd' care to make sure you don't have more problems.
My sister passed lyme on to three children (not in treatment) Was in treatment for lyme with her 4th and that child is fine.
J J. B, Jr., MD The FAMOUS ORGINAL Dr. B. Southampton Hospital
"Failure of Aggressive Antibiotic Therapy to Protect the Placenta from Invasion by B. burgdorferi in a Pregnant Patient with Lyme Borreliosis
A 34 year old patient with Lyme borreliosis remained symptomatic despite seven months of therapy with amoxicillin. Her therapy was therefore changed to cefotaxime, 6g IV daily.
After ten weeks of continuous treatments, she did not experience a remission. Accordingly, treatment was switched to high dose, pulsed cefotaxime, 12g daily, given on two consecutive days each week. After four weeks, the patient was found to have become pregnant; in retrospect, conception was thought to have occurred during the initial course of daily cefotaxime.
Cefotaxime therapy was changed back to 6g daily for a total of four more months, and was followed by oral amoxicillin. Due to poor response, she then changed to cefixime, which was continued through to delivery. Post partum, B. burgdorferi (Bb) was found to be present in the placenta by histologic staining.
Discussion: It is now well known that Borrelia can survive several weeks of antibiotic therapy; mechanisms include sequestration of the spirochete in immunologically protected sites, including intracellular locations, protection from immune and antibiotic attack by S-layers, and periods of dormancy during which time this organism cannot be killed by antibiotics.
This case report confirms the ability of Bb to evade host defenses and antibiotic therapy, and extends this concept to resistance to even prolonged courses of antibiotics.
It also demonstrates that Bb can cross into the placenta despite such ongoing therapy, and that there must obviously be periods of spirochetemia even late into this illness.
These are only a couple when I googl;ed. I was looking for the MDL's finding spirochete in placenta my llmd told me & my sister about a couple years ago.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Does anyone know what symptoms I should be looking for in my little girl? Do I need to jump straight to Igenx or try a blood testing center like Quest that we normally use? Also, isn't Igenx really expensive? Has anyone personally filed a claim for it with their insurance and had a portion paid for?
Posts: 183 | From Texas | Registered: Nov 2007
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I can completely relate to what you are experiencing with your child. My little boy will be two this weekend (has tested negative so far from Igenex).
I had a positive Lyme test halfway through my pregnancy, so I only got some antibiotics in me. Hopefully enough to prevent it being passed to him.
I know you are scared and worried. I feel the same way.
Lyme is also a CLINICAL diagnosis. Your daughter may live years with no symptoms. Or have an immune system strong enough to take on the Lyme. It presents itself in so many different ways, as you know. Your daughter might not have any symptoms. Or at this age cannot communicate obviously that she feels fatigued for example. We know when our babies don't feel well. If she was in pain, she would probably cry chronically. At least my son would.
I strongly recommend having her tested via Igenex. It is expensive and I have not met anyone who's insurance covers it. To me it is worth that piece of mind. $200 a year...that is how I look at it. Once a year he will be tested. CDC tests just do not pick up on LD like these sensitive tests do. I had FOUR negative tests by Quest and Labcorp.
It is hard not to beat yourself up about breastfeeding. Call Igenex and speak with the director, Dr.H. He would be more than willing to discuss this with you. Unfortunately, the pediatrician mentioned in above post has a year waiting list, but he is the best in the country.
I see one of the foremost physicians in the country for Lyme and travel to San Francisco to see this LLMD.
I am in Dallas. My father is an ILADS member and can test your daughter via Igenex if you need that. He is in Denton. If you would like some more information, send me a private message.
All I can do is put it in God's hands.
Posts: 27 | From Dallas. TX | Registered: Aug 2006
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posted
I cannot believe some of these responses. This poor mother is worried sick and you post an article about dead babies with Lyme. That is disgusting. Shame on you!
Posts: 27 | From Dallas. TX | Registered: Aug 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
get a llmd and youll all be ok.
it can be passed, its not your fault, and its going to be ok.
i got it from my mom, its just how it works.
listen to lymendva and go to a lyme pediatrician who specializes in it.
children cannot voice their sx sometimes correctly, so he sounds like a good choice.
the biggest thing to keep in mind is youre going to be ok. HUG
pm me if i can be of further assistance
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
dbourne, I, too, was infected during my eighth month of pregnancy. The tick bit me on my abdomen, just above my navel.
My ob-gyn refused to deliver my son, even though he was scheduled for a c-section in a week, anyway.
They "tested" my placenta - negative. The hospital nurse brought my son to be breastfed. No matter how hard I tried to get him to breastfeed, he refused.
Later, this was used against me when I was accused of not wanting to care for my children (I was faking my illness according to the ducks).
My son was sent home on three weeks oral amoxicillin after having received IV for four days in the hospital. I thought everything was fine.
Two months later I was bedridden and very ill. I had to send all three of my children to live with my sisters.
I finally found an LLMD who recommended I get my baby tested through Igenex. I'm glad I did - at ten months old he was positive by urine PCR, plus positive for mycoplasma and ehrlichia.
He is now 4 years, 9 months old and has been off treatment for two months. He never did show many symptoms. His main ones were tired legs and night terrors.
He now runs around and sleeps through the night.
But I know he's still positive. And I know I will have to worry about him for the rest of my life.
And that's what I have to live with. But I thank God he's in remission right now and will pray it lasts for years and years.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
First of all, don't panic.
Second, find an LLMD. A real one, recommended by a local lyme support group or LymeNet. Not an infectious disease doctor, unless he happens to be an LLMD.
The REALLY good news: Even assuming your child got it from you, children respond WAY better than adults! Assuming it is caught early on and not chronically misdiagnosed for years, children do much better in treatment.
Keep your mom radar tuned. It would be hard with a kid that age. Mine was older... had headaches, leg pains, hurting knees. And could easily relate that to me. You might look for crankiness, not feeling well generally, saying things hurt. But you're not going to get that far because you're going to find a good LLMD. I know Dr. J's wait list is forever but other LLMDs are capable of running a GOOD western blot and coinfection panel on your child. Yes, that means IGeneX - and sometimes insurance will reimburse part of it, at least.
This is not your fault. You relied on your doctor's advice. Also, not all children contract lyme through pregnancy so I'd keep positive until I learn otherwise, and work on finding an LLMD.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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