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Would you treat asymptomatic lyme positive child?

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Posted 6/11/2014 4:12 PM (GMT 0)
Ok, maybe not asymptomatic, but psych symptoms well controlled with meds?

Age 10, history of tantrums that come in cycles (flares?) since age 1 or 2, stomachaches, headaches and hives. Massive psych decline in fall 2013, daily tantrums requiring school support. Started Zoloft in early Feb. 2014 and has been nearly asymptomatic since day 1 on meds.

Positive ELISA in January 2014.

IGenex test results from late February 2014:
IGm:
18 +
**31 ++
41 +
58 +
**83-93 +

IGg
**31 +++
**41 ++

IFA positive at 80+

So it seems he is positive for Lyme. The LLD bumped us to the top of the waitlist and I assume he will want to treat with abx. My son is doing so well now, though. If he has Lyme, he's probably had it for most of his life. Part of me wants to leave well-enough alone, but what if it flares or whatever and starts causing problems again.

Any insight would be appreciated.
Posted 6/11/2014 4:27 PM (GMT 0)
Personally, I would treat with abx if the LL doc diagnoses lyme. You may be just masking the symptoms with the psych meds.

I am not in favor of psych meds unless absolutely necessary...especially with children.
Posted 6/11/2014 5:35 PM (GMT 0)
Yes, ideally he would take abx and then be "cured" and would no longer need psych meds. But I'm not sure it would work like that. His prescribing psychiatrist said he's never seen a lyme case where the person taking them before treatment didn't need psych meds anymore after lyme treatment. I realize that's anecdata, but no one really knows for sure what would happen. Has the damage been done?

If anyone has lyme/psych success stories I would love to hear them.
Posted 6/11/2014 5:59 PM (GMT 0)
Personally I would treat. My daughter was born with Lyme and is now almost 5 and has been in treatment for two years. She has improved a ton and our LLMD said she will be able to go on to have a normal life most likely. I guess about the time puberty hits can be tough for boys and girls with lyme. So treat now and hope for the best.
My daughter also had the tantrums in cycles due to over stimulation and those have pretty much stopped due to meds. If we do a med change then she does act out for a few days we have noticed. Kids heal pretty fast. But of course you son is 10 and if he has had it 10 years it may take a little longer.
Good luck!
Posted 6/11/2014 6:05 PM (GMT 0)
I don't know about children and Lyme psych issues...but I know that I have never had psych issues in my life --not a moment of depression/anxiety. Now I have bouts of anxiety.
From what I have read on this forum...most definitely those psych issues can be resolved once the Lyme is successfully treated.

I think once you see the LLMD, you will have a clearer picture.
Posted 6/11/2014 6:16 PM (GMT 0)
Thanks for the replies. These things are good to know. The other crazy/awful/scary part is we only got him tested for Lyme because another kid his age two houses down has the same psych symptoms and she tested positive for Lyme as well. From the psych issue onset for each, they would have gotten it around the same time about eight years ago. A little too much to be coincidence. Sigh.
Posted 6/11/2014 6:28 PM (GMT 0)
Good for you to investigate!

At least you will know what is causing all the symptoms...and can treat...and children respond very well to treatment for Lyme.

Good luck!
Posted 6/11/2014 7:13 PM (GMT 0)
I myself would treat.
Mostly because I know I had chronic infections as child and it went untreated or monitoring building up in my system as well as toxins.

At very least evaluate his ability to detox and process things as some children are born with poor intestinal functioning and immunity and toxins build and build and the Lyme and past infections can reactivate as adult and then he can really suffer as adult with the disease.

Just my perspective.
Hopefully your doctor can aid in evaluating this

Many doctors lack on this area
That's why many treat and treat and just feel worse all the time
And even people with healthy detox and immunities find they need to detox to get better and at least aid as they treat infections.

If it were my child I would really concentrate on finding out how his body is working in those areas.
Posted 6/11/2014 9:49 PM (GMT 0)
Yes, absolutely, because Lyme can hide in cyst form and the symptoms can occur later.

My FNP wanted to put me on abx just because she found a tick on my back with a tiny red welt.

If your child was treated immediately after the bite for a month, then he might be ok.

Actually, it sounds like he isn't asymptomatic at all, based on the rapid decline.

Just do it.

Margaret
Posted 6/11/2014 10:22 PM (GMT 0)
Yeah, I know. I talked to my neighbor with the Lyme kid and she had some good points. Doing abx isn't something irreversible. If it's not going well you can stop and reevaluate. The abx and risks and side effects have been studied and are known, versus all this nebulous, scary emerging knowledge about Lyme.

Thanks, all!
Posted 6/11/2014 10:28 PM (GMT 0)
Your son needs treatment asap. My son had similar symptoms and responded to abx immediately. No more tantrums. Would recommend Omnicef for neuro lyme. Good luck.
Posted 6/12/2014 4:43 AM (GMT 0)
Those sound like symptoms to me. My daughter started with intrusive thoughts. Then month later stomach aches, headaches, sore throat. joint pains. Treatment really helped her.
Posted 6/12/2014 11:07 AM (GMT 0)
We see the LLMD today... They were good about making room for him in light of the results.
Posted 6/12/2014 1:14 PM (GMT 0)
Our daughter's psych symptoms (diagnosed with ADHD, Tourette's, Aspergers. Also displayed raging and extreme low tolerance for frustration) were the result of her bartonella coinfection. Do some research on PANS/PANDAS:

http://latitudes.org/forums/index.php?showforum=17

She was prescribed psych meds but I declined, deciding instead to investigate the cause. With LLMD prescribed abx treatment and now low doses of Buhner's bartonella/babesia herbal protocols she is asymptomatic. Our LLMD told us that her psych symptoms would resolve with treatment for her infections and they have.

The LLMD believes that our daughter's infections are congenital. Thus her poor response to vaccinations - her already deregulated immune system was unable to handle further immune impact. She developed oral apraxia and loss of gross and fine motor abilities after her 15 month MMR.

Lyme and the coinfections can impact the brain both by direct infection and through inflammation. Stephen Buhner suggests using Japanese knotweed. We use knotweed and curcumin.

Good luck to you. Healing is possible.
Posted 6/12/2014 1:52 PM (GMT 0)
looks like you've got some great answers already, but I would chime in and agree with the others saying that I would treat.

by treating lyme, you'll treat the cause of the psych symptoms and not the just the symptoms.

my son (4) didn't have severe psych symptoms, but he did have some (PANS stuff like rowing mom was talking about)

he's been on abx for 16 weeks; we started treating him within 5 months of symptoms starting, but anyway, those psych symptoms (anger, irritability, fits, anxiety, slightly prone to being obsessive with some things, yet not OCD) all basically gone!

I would treat the lyme.
Posted 6/12/2014 10:51 PM (GMT 0)
Hi Calilyme, how long was your daughter treated ?
Posted 6/12/2014 10:55 PM (GMT 0)
Great. Doc has never seen a case like his before where psych meds are working great and there are no other symptoms. He's seen lots of psych-only Lyme symptoms, but none that respond very well to psych treatment. He's seen psych symptoms improve with treatment, but none where he has had to take people off of psych meds to see if they have improved.

The western blot test results tell us that "Lyme was here" because they reflect the immune response. The IgM bands give a strong indication that Lyme is still there because those are recent infection markers. It suggests that his decline this fall could be a lyme flare. The strong positive on band 31 means it has been there a while because they see that one after a year or more with Lyme.

Our options are either more testing to try to prove to ourselves that Lyme is there with cultures, etc. ($400-600 out of pocket), or just jumping into antibiotics (amoxicillin and azithromycin, with probiotic support) for a few months, then weaning him off Zoloft to see if there is any change. Or do nothing.

So I guess I'm leaning towards the antibiotics. We eventually want to wean him off sertraline anyway, and we know Lyme was or is there and he was never treated for it, and the way his psych symptoms present is just... odd. If the abx don't "cure" the tantrum issue without the sertraline at least we know we tried, especially if he has other or worse issues down the road.
Posted 6/12/2014 11:05 PM (GMT 0)
I think you got good advice in this thread. I would try the abx, but be warned that his symptoms will get worse before they get better, as he will be having a herxheimer. If that does happen, it is certainly a sign that he does indeed have lyme.

I'm surprised your doctor isn't treating based on positive test results, bc I've heard that most positive tests are accurate, although I may be wrong.

Good luck, Margaret
Posted 6/13/2014 12:20 PM (GMT 0)
You have tested for all coinfections as well? I am assuming your doctor would know that lyme almost never occurs on it's own, but with mycoplasma, babesia, bartonella, ehrlichia, RMSF and/or others.

We knew we were dealing with bartonella because our daughter's test returned positive, but we did not know we were also dealing with a protozoan/babesia-like-organism because all of those tests returned negative and she was asymptomatic for anything other than bart; and this was the infection that was causing most of the cognitive/executive function.

We didn't find out about the second infection until we ran a trial of babesia herbs and ended up with a babesia-like herx reaction - air hunger, chest pressure, coughing, sighing - of which we had never seen symptoms of before. Treatment of the second co-infection has brought us to a very good place.
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