The Igenex test for my 11 year old daughter came back positive for both IGG AND IGM. She actually EXCEEDS the criteria for both & is even CDC positive on both, I believe.

The thing with my daughter is that as far as I can tell, she has no real symptoms.

She is 11 years old and LITERALLY has a higher IQ than me -- she is a candidate for Mensa. She makes straight A's and her behavior has always been good.

Lately, she & I have been butting heads a bit, but I just thought that was typical pre-teen behavior.

The other day I caught her watching TV before her chores were done -- when I asked her about it, she said: "Oh, is the TV ON?' and she was so serious about it.

She's far too smart to try to pull stupid crap like that with me -- and then she said, "Mom, I honestly don't remember turning it on." And I believed her.

So now I have to look at her behavior and wonder - is this normal kid stuff - or is it the Lyme?

She's not in pain - she's not having other health problems -- do we treat her with antibiotics? Do we wait for her to get sick?

I just don't want to treat her and then make my non-symptomatic child sicker than sick.

I know I gave this to her.

I'm trying not to feel the guilt because I didn't know I was giving it to her...and she could go outside and roll on the ground and get it all by herself. Guilt is not useful.

But I need some advice.

Those of you with sick kids - I know you've researched a great deal. Please just email the crap out of me with all the links & info that you have.

I need to know that we're making the right decision. I trust my doc with ME...I just don't know what he has planned for her - and I want to know AHEAD OF TIME what different treatments will do.

Now, yesterday my LLMD implied that my mom had Lyme based on her MULTIPLE SYMPTOMS (and probably some co-infections) too - but he was holding out for the IgeneX tests before he said anything -- even though I know he knew that she's got it. Hell, I'm the one that diagnosed her with it first.

The woman can't even stay awake at work - she's taking naps UNDER her desk because of her inability to sleep like a regular person.

I have double dog dared her to sign on here - so when she does -- please give her a warm Lymenet welcome & load her up with all the good links...and tell her how delightful her daughter, DR Wiseass is...all that kind stuff, OK?

Thank you for any help you can give.

My email is: [email protected] for those that want to send info directly to me.

Blessings,

Must say i have loved your post from day one. I usually only post when kids stuff is needed, so here I am.

You might have read some of my post before my son Dominic had lyme first (or so we thought). Long story short, once Dominic was dx and in treatment with Dr. C, then the light bulb went off about my own health issues.

The guilt?? yep, know all about that. Not only did Dominic get Lyme from the tick that bite him at 3 yrs old, but also from me. Once I tested postive, Dr. C wanted my other 2 kids tested.

Like you no real sypm. except a few in my youngest but they could also have been "normal kids stuff". My daughter came back and tested 1 band from CDC positive. I couldn't believe it! My youngest gets the perfect bulls eye rash every 3 months, only tested with a few bands... go figure.

The way DR. C told me is that her immune system is fighting it and doing good, but eventually it might get weak and the beast will come out. Hannah was treated for 6 months taken off abx in March then just recently started again due to symp. coming out.

Dominic is also a A student although he has had it worse with major symp. he is doing alot better. We have just started Amino Acid therapy per Dr. C and he is actually doing very well. Finally off abx for about a month and doing good.

I know exactly what you mean I posted a few weeks back about how do you know when a kid is just a kid or is it lyme. Sorry you have to start the wonderful guessing game of lyme with kids.

Right off the top of my head I think the ABC's of Lyme is the greatest thing and i send it to my kids school and indiv. teachers too.

You don't KNOW that you gave it to her. I have had Lyme for 20 yrs. My daughter is 13 and so when I was diagnosed I got her tested-twice. First time thru HMO hosp lab (WB only) and second time thru MDL (WB, C6, ELISA & Babs titer).

Both times nothing but a IgG 41 band.

So it appears I didn't give it to her. She's symptom free (as best one can tell with a 13 yr old).

Don't beat yourself up. She may have been bitten by a tick.

To treat or not?????? Are there people (maybe lots of them) who carry Lyme but don't get sick. We need more data and don't have it. In dog studies (Straubinger) usually 3/4 of the dogs had overt symptoms and at autopsy almost all had joint inflammation.

The abx destroy gut flora, create yeast problems and drives Bb into dormant forms.

We need better tx, especially for the kids.

A consult with Dr J??????

The herbal approach in the book healing Lyme by Buchner?? You can buy that thru the link to Amazon right here on Lymenet. If it were my kid I might try that first. Then retest in 6 months? What test? Since there is no test for active infection, or is there? Maybe no IgM bands on a WB would indicate good things.

All those bands are great-a good immune response.

And your mom too, this just su***.

Janet

When both my boys got diagnosed, they had had symptoms for 3 yrs (each kid). Both were not debilitated by their symptom(s). But, since I was being tested, I thought, well, why not them? We were all positive thru Igenex.

My LLMD treated all of us with various rounds of oral abx combos. One son had babs, one had bart.

After about 2 yrs, they both had lost their original symptom (headaches for oldest, leg pain for youngest) so my LLMD and I thought, time for a break? With no agreement of when to start their treatment back up, just a wait and see. It's been about 2+ years of them off of all abx, although my youngest son developed a bulls-eye looking rash on his knee 2 yrs ago, and he was positive for bart (1st time) so his LLMD put him on Rifampin (alone) for about 3 months, he retested and it was negative, so he has been off of all abx since that point.

Their WB tests, after stopping all abx, were not completely negative, can't remember the bands. Not CDC positive, but not entirely negative. So, they stopped abx, had essentially no symptoms left, but still had slightly positive WB test results.

I am still in a holding pattern for both boys. If any symptoms rear up, they of course will be back into the LLMD for reevaluation, and probably back on the merry go round.

But, trying to think, if they did NOT have symptoms, but had positive WB tests, would I treat? (I'm sure that's what your looking for-the answer to that one) I think I would say no, because right now, as it stands, they are almost positive (they have bands, just not a lot of them, and not CDC pos)via testing, but have no symptoms. So, they're off abx.

Sorry so convoluted, but I feel we're similar to where you're at, only both mine had positive WB tests in the past, and obvious symptoms.

But, I would not just start them up on abx now, because their tests are not negative. I believe that abx can of course cause symptoms to come out, and right now, we're in a nice holding pattern. One I can live with.

I would suggest that you take about an hour, and clearly define for yourself first, where you will allow your daughter to go out in the outdoors-don't know your neighborhood situation, but if you live near tick infested areas, you might want to do some rethinking about play boundaries. I do firmly believe that if you know you've had/have Lyme, and get another tick bite, you have such a hard time trying to get it all started up again-the treatment, that is.

I no longer allow my boys to attend outdoor education trips via the schools they attend because the school adminstration is totally ignorant and uneducated when it comes to ticks and bites, etc. They are not in the game to become knowledgable about it either, so we opt out. Hard to do, but I can live with it. Something else you may want to mull over.

Relapse is hell, and I know other moms have talked about tick bites and reinfections via school trips, don't know if you are up for a search of the old posts or not, but it got heated.

If you're of the "I'm not going to let it win" mindset, meaning you're not going to stop doing all the outdoor things you love to do, or stop your kids from doing them, then you're in for a heck of a ride, because eventually, the ticks do win out-they will bite, they will reinfect, and if you haven't got it under control, or knocked down to livable levels, then you are the one who has lost.

Lost years of life, years of living in peace.

Because this disease is hell on earth, and some of us aren't as good as getting it moved to a managable level yet.

Yes, there is always the chance that symptoms could arrive in the future. But if the LD is in a dormant state now, I can't see how the antibiotics would reach it - if they did, the chances are that they would just stir everything up and give you a very sick child.

Doctors should treat illnesses, not test results.

My 15 year old son has been on tx for 9 months, and he's back to 90-95%. The problem ? School is just around the corner, and with it comes colds, flu's, viruses, etc. Schools are germ factories. Now, I know because he's still Bb infected that any other bug he catches can hit him like a ton of bricks.

Your daughter may have manifested a symptom with her forgetfullness or, maybe not ? She definitely has a positive test, and what happens if school comes around, she picks up a virus, and whamo ?

In your situation what I may do personally, is try low dose abx on her and gauge the reaction. It may stay dormant forever, it may not. However, do you want to do nothing now, and have it hit her in the future ?

I can see that people are definitely divided about just HOW they would go about dealing with this.

PLEASE - keep your feedback coming if you have it.

I'm reading & digesting it all right now.

And then I'll pray (some more) and trust in Divine Guidance....but I know that most of the time -- Divine Guidance can come thru the mouths of mere humans....so I need you to keep on posting.

And please don't get sidetracked & anyone get in a heated debate.

I need to hear both sides of this issue: to treat or not to treat - that IS the ultimate question for me...and IF treatment - HOW MUCH, HOW OFTEN, WHAT KIND?

What I would like, though, iS RESEARCH links and STUDIES - assuming that they are out there SOMEWHERE.

IF any of you can just point me in all the directions -- all the different rocks I need to turn up to look under, I will greatly appreciate it.

Lymenet members have been so valauble for me personally in the past -- and I have been extremely grateful - and that's why I've come here again - seeking answers from you veterans & personal researchers.

As any parent knows, when it comes to being grateful for help given to your child....THANK YOU is usually not a strong enough word.

So I say "thanks" to all of you whom have posted so far, knowing that it is such a small little word for such a heartfelt feeling...and I thank others in advance for your posts as well.

We have told my daughter this evening -- and she took it rather bravely, altho she did shed some tears. I tried to be as positive & upbeat as I could...ASSURING her that my doctor PROMISED me that she would never get sick like me. And then I made her laugh when I told her that I told the doc I WOULD HUNT HIS *** DOWN IF HE RETIRED ANY TIME SOON. (I did actually say that to my doc, BTW. And he took it quite well - despite knowing that I meant it!)

My daughter laughed at this, of course, because when I cuss - it's usually ALWAYS funny cuz I cuss Southern Belle style.

As you may imagine, my nerves are shot & I have a migraine in addition to laryngitis and snot coming out of all my upper orificies. (Is orifices the word? Or is that a Latin word...orifi? Who cares.)

I have a couple of emails to write, a phone call to my poor overwhelmed mother, and then I shall sedate myself and return here tomorrow to thank you all over again.

Blessings,

I and my older daughter have been sick for years. The youngest is healthy except for very mild asthma, but when I asked for a Western Blot last summer, it was amazingly positive! Way more than her mom and sister, who unquestionably have been dealing with Lyme.

If I really thought about it, she had some learning issues that were resolving, was slow getting ready for school, and some migrating aches and pains, esp, in her feet (but is a dancer), and had a strange sensation in her eye at odd times, as if an eyelash were caught in it, but there wasn't any eyelash.

If I thought even more, she had some strange tummy problems, that I usually heard about just before ballet, and figured she was just nervous. And she had an intense fear of mice, which caused her to act as if she were running for her life when she got in the car. Hmmmmm......

But overall, you would think she was very, very healthy, energetic (6 dance classes/week), well-adjusted etc.

Oh- and some of those "asthma" symptoms weren't responding to large increases in meds, which was strange too.

I first consented to treating her for 4 weeks with high dose (2000mg amox.), based on the idea, pushed strongly by our primary care, that she might have acquired it recently. I didn't really think so, but it seemed prudent.

Nothing much happened. Except that the respiratory and eye problems went away totally, and so did the traveling pains.

She ended up doing 6 weeks of amox. and then some zithromax and Plaquenil (maybe even some Ceftin) for a total of 3 months. All symptoms were gone, and she seemed a lot more organized and focused too.

When she came off, some of the things quickly returned. Eye thing, respiratory, and (oops) forgot to mention, some insomnia.

LLMD put her on tetracycline for 3 months, no herx, nothing got worse, but everyhing got better again.

He recommended again taking her off, and she has been fine ever since, almost a year.

LLMD said sometimes with mild illness, the bugs don't kick up so much trouble in treatment and things go pretty smoothly.

In our householfd, the standard for being "healthy" has been extremely affected by the rather dramatic illness of her sister, and the persistent if quieter illness of mine.

My son has a positive Lyme-specific band at MDL (IgG). LLMD said we could do an antibiotic challenge to see if he has Lyme. But he is heading off to college and I am going to hold off.

My older daughter started treatment in 6th grade with only eye pain as a symptom, we thought. It was extreme eye pain for hours each day.

But she had had years of health issues, everything from frequent pneumonias, to a collapsing knee, to headaches, to stomach problems. I think her illness was much deeper.

When she went on tetracycline, all hell broke loose. Four years later, she is still dealing with the after effects of her illness and treatment, but all her tests are completely negative at this point.

I think her treatment would have been less traumatic if she had done gentler regimen at first, and clearly she wasn't ready for tetracycline at the beginning of treatment.

Like you I also gave the crud to my daughter and likely my son. My daughter will likely pass it on to my grandaughters. Guilt? I guess I could have it, but I don't. There is no way I could have known, and even my daughter had no idea.

As for your preteener, been there, done that. My duaghter also used to say I don't remember alot. She has been obviously sick since she was 15 or so. She didn't remember odd things, so I usually did believe her. She was also a typical teenager and then some, no worse, no less. I always attributed the FM (that's what we thought it was) for the memory problems. Can't fault her for lack of memory, gesh sometimes I couldn't even remember her name.

Someone can tell you to treat and give you all the lastest and greatest reports and another can tell you not to and give you even more lastest and greatest.

I myself am glad we treated there were things there that I never put a link to Lyme. Where Dominic's sypm's were extreme joint pain, high fevers, breathing and heart trouble, his physical list goes on.

Once Hannah was on 6 weeks treatment for the first time she could spell her name (was 4 going on 5). She could remember and say her ABC's. She had been on medicine for her "stomach aches/troubles" daily for over a year. Once lyme treatment all that medicine stopped. All her extreme fears have subsided too and now she sleeps all night.

At the time family members said I was crazy and "everyone doesn't have lyme"!! but I did just like you are. I came here got info and support from this wonderful family we call Lymenet and I prayed alot.

In the end it is something you have to feel comfortable with. I will keep you and your family in my thoughts and prayers.

Starr

So did many others...Its not that EVERYBODY has Lyme they'd say.

Well...I had them tested...off the charts on the older not really symtpmatic one...however, the younger more 'sick' one didn't have as positive a test.

In the end we chose to treat...why?

I remebered the same 'it's nothing' symptoms I had had for YEARS in fact DECADES before I went full-blown. I then told my wife that no matter what my fate would NOT become theirs.

We treated them....low and behond ALOT of things disappered...ALOT.

Things that we thought we actually parts of their personality, etc....EVERYTHING got better. (TI remembet hinking to myself how people had said to me for years that I was just a 'sickly'person and that there wasn't anything really wrong...shut up and grow old gracefully.)

Ha....I say to you with all sincerity...I wouldn't hesitate.

I would teat NOW.

Sorry....I remember how it took so much from me over the last 35 years or so...not my children...no sir...not on my watch.

Plain and simple...treat or be beat.

That's my vote.

Trout

PS...I do agree with everyones point of view here by the way...but after weighing in what I just told you...and the changes we have enjoyed in our children I'm thankful God gave me the guidance he did...Divine INtervention from within my own gut.

Dr. W, quite possible I missed something, but what advice did your LLMD give you about treating your daughter?

Knowing what I know now, about my beautiful, talented, athletic, artistic, gifted child, you bet your sweet petunia, I would treat even if some symptoms got sturred up..And they will !!!

My daughter spends each day in her room and almost never does anything..She can't..She went undiagnosed for years and treated with psych meds..But looking back she was clinical and had hundreds of exposures. But ducks said not to worry, she did not have lyme disease..No way...I believed them..

And as of this week she even thinks she may have some permanent cognitive damage from her dangerous behaviors. In her dispair she has tried to end it all many times.

So I was anxious too treat before the hormones hit my younger one...this was another motivating factor.

I had similar situation.

Treating my own neuro Lyme; reflecting guiltily on the many tick bites over the years that I KNOW my lovely 13 year old has had...

Drug her by heels to the LLMD for an IGeneX test.

Returned CDC positive with lots o'bands!

This is a healthy appearing, vivacious, honor-roll girl, no more back-talkish than the average ball of burgeoning hormones.

She's an eighth grader who has NEVER MISSED A DAY OF SCHOOL SICK.

However, when I thought about it...

Her knees had been hurting (I put it down to soccer.)

She'd complained intermittently of leg pain (put this down to "growing pains").

She had more headaches than a 13 year old ought to have.

When I considered the possibility of her winding up like me, the choice to treat vs. not treat was easy. She chews up her 3000 mg of Amox. cheerfully enough while eyeing my PICC line distastefully.

I would rather err on the side of caution. Also, sometimes close examination will find that "asymptomatic" isn't really what it seems; it just means symptoms are mild and haven't gotten dramatic yet.

Good luck to you and your brood!

But let me add something to the mix.

I met a NIH researcher with a PhD. in Lyme research. She told me that she does not have Lyme, but if she were tested that she's sure she'd be off-the-charts CDC positive.

Why?

Because in the lab she's been exposed to Borrelia, though not infected. It's something about antibodies and antigens. To me it implies that being exposed to it can have your body reacting to it, but not necessarily have it.

I have a 16 year old with Lyme, and you do not want this. I'm not sure what I would do, frankly. I'd hate to stir it up, but I'd hate to miss the window of opportunity to whack it, too.

Sheesh.

orion

Gosh,you never know what is around the corner.Such is life with Lyme,heh,I'll bring over some powered donuts and we can go over everything.

Seriously,I'm sure you will do the best thing and our thoughts and prayers are with you.

My understanding is that the LD test depends on 'free-floating' antibodies - ones not yet attached and working. A high positive test in an asymptomic person, means loads of free antibodies which could indicate that the immune system is coping well on its own. A far more sick person, who's immune system is overwhelmed, will have few if any free antibodies as they are all engaged in the fight and thus will test negative.

quote:

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Originally posted by brodiemac:
Sorry, but the goldscout link I posted above won't work when you click on it - don't know why. But type it in to your browser and it does.

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I've been reading and responding to emails today, and I imagine I'll be doing a great deal of that before we meet again with our LLMD in 2 weeks. (I do not know what he has in mind yet...)

It is my goal to really cram the info in - as KNOWLEDGE is POWER. And that will allow me to ask better questions and propose other options if I don't like the doc's first idea.

Over the last 24++ hours, I have been racking my brain about things that could possibly be minor symptoms -- and again, it's like -- is that just *normal* stuff or a symptom?

Last night she went into the laundry room and then came right back out saying, "I forgot why I was going in there. I hate it when that happens." And then I thought,
"OH, @#$% !" That sounds like one of MY major symptoms -- but then, don't 'normal' people do that too from time to time?

And then I started thinking about how she asked just the other day about whether I could run for 3 minutes without stopping when I was her age.

Naturally I didn't remember such trivia, but asked her some follow up questions. She told me that she just gets too exhausted and can't keep running. So I think again, "Is that a symptom, or is my dear brainiac child in need of some physical conditioning?"

(And BTW, my daughter knows how to look for the bright side of this negative situation, as when we told her about her Lyme test results - after she shed some tears - she straightened up and had a hint of a smile on her face and asked: "Can this get me out of PE?" Yep. She's MY kid for sure!)

If there are any others of you that have more advice/opinions to give, please just keep on posting. I really do value your thoughts. And if you'd rather, you could send me some of your research to my email addy: [email protected]

I've got to return to all my reading - just wanted to stop by and thank you all again.

I can never repay you for all of your heart-felt support and prayers, other than to promise that you will all be in my prayers as I ask God to send many blessings your way.

With much gratitude,