Topic: Daughter 2 1/2 ,not showing signs.Probably not congental?
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
She has no definite signs of Lyme. Of course every little thing with her makes me panic but overall she seems very healthy. I had Lyme while pregnant with her but did not know it yet.
I had her tested but she only came back positive for band 41, I believe Igg.
I also only tested positive for band 41 but Igg and Igm.
My LLMD doesn't think she has it and said there would be more signs by now. However, I've read of some congenital Lymies not showing signs until much later.
Is there anyone who had a child w/congenital Lyme where it didn't show up till the child was older with little or no signs at age 2 1/2?
I should also mention my daughter was treated this summer w/amoxicillan for 10 days due to a tick bite. The tick was barely attached and wasn't there more than 4 hrs.
Posts: 2541 | From Northeast | Registered: Jan 2008
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CD57
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hi -- my son is 3.5 and has no signs, but is positive for Lyme, babesia, and mycoplasma. My LLMD wants to treat him before he turns 5, I think symptoms or not. He says they're easiest to treat under age 5.
My husband is totally against this and I'm not sure how I feel about it. I don't want my son to have ANYTHING to do with this illness if it can be helped, can't help but think it's a time bomb.
Anyone else?
Posts: 3528 | From US | Registered: Apr 2007
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I think that a lot of us here are congenital Lymies but the symptoms don't year their ugly heads for years, even decades later.
I suspect I have it congenitally but am only just now symptomatic at age 38.
One of my daughters just tested positive, too. She is 5 years old and showing very few physical symptoms. She seems to have weak muscles and gets a lot of anxiety issues. The younger one had a few positive bands but not a positive result. She has frequent constipation and at age four, she seems to have ADD.
I don't know whether or to treat them both.
I am going to see an LLMD in December so I can have him look at them and see what's best.
I'd HATE for them to get full-blown symptoms!
Better to treat early than when they're very sick.
As far as your baby, it's so hard to know, isn't it? What's Lyme and what's normal toddler behavior?
Did you test through Igenex?
I'd see a pediatric LLMD to see what he thinks... that's the best advice I can think of.
Let us know how it goes...
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
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Dawnee
Unregistered
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Maybe not. Even though I KNOW that Lyme can be passed in vitro.. it doesnt always mean an infected mother will pass it to her baby.
Just like I had a cousin with Aids... back in the 80s his doctors told his wife and him that it was FINE to have sex, and have kids. That they wouldn't "catch" it. (he got it from a blood transfusion... hemophilia runs in my family)
Well... the wife never contracted AIDS and neither did their 3 children. (although one died suddenly at the age of 2 from some rare liver thing...)
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tickled1
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Thanks everyone for all your input. Neither one of us has been tested through Igenex. Mostly b/c my Lyme doc doesn't believe in Igenex. She said that their testing is so sensitive that just about anyone would turn up positive.
Do I agree w/her? I don't know. I haven't felt the need to test myself through Igenex b/c my LLMD dx me clinically even though my tests through Quest are negative and I've been in treatment for a year now so she definitely isn't against treating long term for chronic Lyme.
I'm really stuck between a rock and a hard place on this one b/c even if my daughter came up positive through Igenex, I don't know if my LLMD would treat her if she's not really showing any symptoms. But on the other hand, if she does have it and I wait for symptoms to develop, it would be harder to get rid of and may interfere w/her schooling.
My husband thinks I'm obsessing but I have to keep reminding him that I was pregnant w/her while having a bad case of Lyme and that watching her closely is not irrational but necessary.
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Shosty
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I think you should stop worrying about this until there is good reason to. It is a trick to keep something on the back burner of your mind but not think about it too much. The test results for your child are very benign, on the face of it, and that should be reassuring.
I have read that Lyme is transmitted only if it is very active in the mother, and circulating in the bloodstream. If it is settled and hidden in tissues, it is much less likely to be transmitted to the child. I don't know if this is true, but I am passing it along.
It is always possible that adolescence and the hormones involved can bring out Lyme that has been dormant, although it can be hard to tell whether that is the case, or if the adolescent was bitten recently, especially if the IgM is positive.
At any rate, you can deal with that very effectively if the need arises. One of our pre-teens responded completely w/in 2 months. Another of our kids had symptoms but we did not treat, and after puberty the symptoms receded. Our third got very sick and needed more treatment, but has other health problems (insulin-dependent diabetes and other things). All 3 are doing fine now.
Lyme could resurface for our kids (or me), but, when you have had a sick kid, you appreciate and enjoy health years. Be grateful for today!
I would be more concerned about the 10 days of amox. for the tick on her. That is not long enough, and the dose may have been too low. If there was no reason to do antibiotics, fine, but it there was, this was not enough time or, perhaps, amount. Maybe have her tested again to make sure this bite did not cause a problem.
If it was a dog tick, or if it tested negative (did you have the tick tested?) then no worries.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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As for testing, if the infection is lying dormant, it will not show in tests until it is activated by stress of somekind (other infections, adrenal overload, environmental factors, etc.) Even then, tests are still not 100% accurate. And how do you test for all the co-infections.
Your doctor certainly has a point about treating early if lyme or other TBD are suspected. I'm sure a clinical evaluation would be helpful. Perhaps even various developmental tests. But they would be best given by the LLMD who has seen all this in countless others. There may be things the doctor sees that will help determine one way or the other.
I hope you can find medical literature about this. Surely some LLMDs have written about this. What advice would the best pediatric LLMD give about testing/treating toddlers or about having another baby?
Please contact Sara (Sarah?) in California. She has done a great deal of research and can help guide you with this. I saw that someone posted some of her threads on another thread of yours and you can search all the Calif. support groups to find the one she leads.
I think you are very wise to be realistic and cautious. I'm sorry to read on another thread of yours about new symptoms. Still, soon, you may be much better. Please keep that hope alive.
We are always learning more. When Sarah posted here (and I really miss her posts) she always had great research to share. I hope you can find her. She is a marvel.
Best of luck and hope.
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[ 29. October 2008, 12:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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My daughter is six and tests positive (IGM) for Lyme. She really doesn't have a lot of symptoms.
From what I've read, a lot oh the childhood symptoms look a lot like being a child until they get really sick.
Both wy wife and I also have Lyme.
My wife is almost bedridden and has some specific Lyme bands bu is Igenex Negative overall.
I am Idenex Positive (IGM) and have some neurogical symptoms. BuT I am in much much better shape than my wife.
When my daughter tested positive this year, we startet to treat her with her Zithromax. She has been on it for 2 months but we don't know how much longer.
Her doctor is confused. She tests IGM positive but her CD-57 is 225. We are waiting for some more Immune sysytem test results to see where we go from here. He thinks she may not have Lyme.
I am wondering if it is possible to pass the anitbodies for Lyme without passing the disease itself.
Posts: 65 | From Georgia | Registered: Oct 2007
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posted
I am in the same situation as you. I am not certain if I had lyme disease when I was pregnant with my son though.
I probably did though because I had weird symptoms before getting pregnant with him (stomach issues, pelvic pain, muscle aches). Then I went on a gluten free diet and got so much better.
I got pregnant, felt pretty well during pregnancy, despite gestational diabetes, anemia, and giving my shots heparin every day for antiphospholipid antibodies (to prevent miscarriage since I had one before).
After having him, I went off the gluten free diet. I nursed him for 20 months. The last few months of nursing him, I didn't feel well, but I attributed it to hormones.
Of course, it was lyme at that time, definitely (when I got it, I'll never, ever know).
My son does not really show symptoms. He has a peanut allergy (doubt this is related though).
He does wake up in the middle of the night sometimes and he does sweat sometimes when falling asleep (i have been told by other parents with toddlers that this is all normal though).
I never had him tested because how could i treat him if he is symptom free anyway? My LLMD has three kids, all congenital lyme and she said he would have symptoms by now.
I just figure that if the goal of a lymie is to get to remission and a child is basically asymptomatic (lyme is dormant) how do you justify long term antibiotic treatment?
I plan on having more children. I have met tons of moms online who were treated during pregnancy and did not pass lyme to their children.
One mom told me that Dr. Jones said there is hardly even a chance of passing it if you are treated (i forget the percentage- maybe 1%).
I personally know lots of women who had lyme disease years ago and then went on to have healthy kids and didn't even treat during pregnancy.
I plan on getting pregnant next year. I am 95% better now, and off abx. I plan on going back on them before trying to conceive. I am giving my body a break from them now.
I think I'll focus on more alternative methods of healing for now, but I do plan on going back on abx to prevent transmission. Ideally, I would like two more children, but we'll see how I do with one more....
I am 35, so my clock is definitely ticking....
Posts: 871 | From NJ | Registered: Mar 2007
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tickled1
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maureen,
I feel my clock is ticking too. I'm 33 but probably won't be ready to try again for a little while so of course there's a whole other set of risks over 35. I wish you the best of luck as well and glad to hear you are 95% better. I think I'm getting close to that too. Let's pray for 100%!
Posts: 2541 | From Northeast | Registered: Jan 2008
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Geneal
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Member # 10375
posted
Other than RSV at age 2 and two bouts of bacterial pneumonia
Within ten days, my dughter didn't show symptoms until age 5.
My son has never been objectively symptomatic.
His symptoms and signs are more subjective such as red pinnas,
A hole in his heart at birth, failure to reach developmental milestones,
And now specific difficulty with spatial concepts.
Both congenital with Lyme.
Just be cautious and watch your child carefully.
That is all you can do.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
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Member # 14257
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Geneal,
I'm so sorry to hear your kids are sick. Are they both being treated now? If so, how is that going? My heart really goes out to you! I wish I could hug them both, and you!
Laura
Posts: 2541 | From Northeast | Registered: Jan 2008
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