posted
I had my LLMD draw blood from my two gilrs (ages four and five) to test for Lyme. I was almost certain they would test negative as I'm pretty sure I was infected earlier this summer since that's when my symptoms began. I never saw them with any sort of bite mark or EM rash on them (trust me, I check them obsessively now!)
To my utter shock, they both were CDC and Igenex positive for Lyme. They have been asymptomatic at this point, though.
This must mean that I have had Lyme for longer than I thought. It makes sense because ever since my early teens, I have always needed much more sleep than the average person and was always tired even after ten or more hours of sleep. Plus, there was the brain fog.
I thought it was hypothyroidism since supplements made me feel better but now I wonder why a teen would have gotten hypothyroidism to begin with. Lyme, perhaps?
So perhaps I've had it since I was born (my mother told me she picked many ticks off herself as a kid) and I must have given it to them in utero. I guess I have no way of knowing when I got this bug.
Anyway, the kids seem to be asymptomatic. My LLMD does not treat kids so he referred me to a clinic in Mo and one in LA. Do I make an appointment for treatment for them and hope that treating it now will make it so they are never symptomatic? Or wait to treat til they become symptomatic?
What do I do?
I do not have their results in front of me or I would post them. He did mention that their CD-57 tests were both way over the normal range... one in the 400s and one in the 800s. He thought it meant that maybe one of the tests was wrong so he is having Dr. Shaw at Igenex review the results and do a PCR.
I can't believe that a child would have to gothrough this. It isn't fair.
-------------------- 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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posted
Tough to say what the right thing to do is.
First, are their positive bands only IgG? If so, considering they aren't symptomatic AND have such high CD-57, I would be less inclined to worry.
Posts: 561 | From mass | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My children see the LLMD in La.
I can tell you that he does look at a Western Blot.
Then he says "What are the symptoms?"
I did a pretty comprehensive list of Lyme disease symptoms in
Small children, toddlers and congenital cases.(May of 2007)
My daughter was always more symptomatic than my son.
However, he had other issues.
Not joint pain, not fatigue...
Things such as difficulty breathing at birth, a hole in his heart at birth,
Getting thrush all the time, red pinnas of his ears,
Slow to develop (physical milestones), etc.
These could all be attributed to congenital Lyme.
While seemingly asymptomatic, he clearly had
Different symptoms than myself or my daughter.
I would look at possible congenital Lyme symptoms.
See if any would fit your children.
It is so very scary to find our about our most precious babies.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
The IgG vs. IgM question was mine as well.
Since we treat until we're symptom-free I don't know what the point of treatment would be. The WB shows that they were exposed. The fact that they're well seems to indicate that for the time being they are fighting it off on their own.
I would probably just do things to keep their immune systems functioning optimally.
I don't think there's a black and white answer to this question.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I think they are postive on both IGm and IGG. I'll have to get a copy of the results and get back to you.
DD#1- 5.5 years old.
She was the worst colicky baby of all time. She SCREAMED for hours and hours at a time. I felt like there was something wrong with her but of course, the pediatrician just told me that some babies were colicky. I attributed it to her redheaded temperament.
She does have a high-strung personality and overeacts at the slightest provocation. Her anger is sometimes explosive. I refer her to as "emotionally sensitive." Not to her face, though.
She is slightly hypotonic and had some minor physical developmental gross-motor delays (didn't bear weight... asthesia? sp?, walked a bit late, is a little weak) but her fine-motor skills, attention, language, and cognition are excellent.
Lyme?
DD#2 4 years old
Has the sweetest temperament but was always a clingy baby. She cried every day, all day for the first six weeks of pre-school last year. Her teachers called it "difficult."
She is not hyperactive but has poor attention. (Her father has ADD so she could come by that honestly.)
She also had a dry, hacking cough for a year last year. Pediatrician thought it was asthma but an inhaler did nothing for it. Ears are frequently red.
Lyme?
I am wringing my hands on what to do on this one.
Maybe the immune system can fight it off for a long time? Forever, even?
Or if I wait, maybe they'll take a turn for the worse?
More comments are welcome.
Posts: 61 | From TX | Registered: Sep 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If they are having symptoms, that's different, I would treat. I treated my daughter on headaches and learning disabilities as her only symptoms. She also tends to be whiney. She had an equivocal test ... an IND on band 34 and a + on band 41.
We gave her a trial run of abx to see her response, and she had a good response to them so we treated her for several months.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have a son (15) who is CDC pos --on all three IGM bands that are tested.
He is essentially asymptomatic although he suffered sudden unilateral hearing loss at age 8 (Lyme?).
In consultation with our llmd we have decided to wait and watch and only treat if he becomes symptomatic.
Interestingly, we have some pretty sick family members with very weakly positive tests, so I do believe that for some the sicker you are the less positive you test, and vice versa.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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tickbattler
Unregistered
posted
I am so sorry you are going through this. It is truly the worst nightmare to have your children infected. I am dealing with the same thing with my three young children (twin 4 year old boys and 2 year old daughter).
For over a year I watched one of my sons become more and more irritable and aggressive, wondering if he had lyme. He had only band 41 show up. Finally, after he starting getting infection after infection, I tested him again and more bands showed up, but he still was negative. I took him to Dr. J and began treatment.
I wish I had treated him earlier, but he is starting to get better after only 4 months of treatment. He has not been sick since starting treatment and is a much happier child. He still can be "oppositional" but we have many more good days than before.
My other twin boy started showing symptoms out of the blue and it came on much faster over a 2 month period.
I now am evaluating what to do with my 2 year old, who has a few symptoms (itching her scalp and irritability) and a negative test. I know I was infected when I delivered and breastfed her. I am taking her to Dr. J next month.
If my children had the postive tests you describe and the symptoms you describe, I would treat them.
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They have been asymptomatic at this point, though.![[Mad]](mad.gif)
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