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Lyme Disease
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Posted 1/8/2012 4:21 PM (GMT 0)
Do you guys think I should consider Lyme disease for my 1-year-old nephew?

His father definitely had/has Lyme disease. He's one of those people who got the bull's eye and was treated, then was fine...a few years later he had a flare - either reinfected or reactivated infection...personally I have a gut feeling it's still working on him - I mean he's still a non-stop workaholic, but he's always tired, very forgetful, and complains of knee pain which may or may not be job-related.

My sister has undifferentiated connective tissue disorder aka "pre-lupus/pre-RA". I've hinted that I suspect Lyme - but I don't want to push, especially since she's been doing pretty well on her treatment and now is not the time to make any changes if she doesn't have to...but I mean I'm sure you guys see all the same red flags I do.

My nephew has been unexplainably sick more than I'd expect by chance in the short year he's been here. He is the happiest baby (and the chubbiest!) - and such a good baby. He's back in the ER again for the high fever and wheezing, he's been on a nebulizer for most of his life - I mean babies obviously can't be like, "Mommy, I have knee pain and brain fog!" (considering all he says so far is "dadadada!") ...so could all of these asthma-like symptoms be Lyme-related? (No one in the family has asthma - except for ME, sort of - I was diagnosed with it at 12 right at the height of my Lyme symptoms - I don't have it now but they assumed that's what was going on with my breathing problems). He also has recurring ear infections, which is like having sinus infections for babies (they don't have sinuses yet - how weird is that?) ...he just reminds me of the baby version of me when I was 12 and started getting sick.

Sorry this is a little scatter-brained, but it's a really confusing situation and his doctor isn't really concerned but I just have this feeling...and after all the posts lately about whether or not to tell people they might have Lyme, and about how it can be passed congenitally...I think I have to step in and try to help my favorite little boy. I don't think my sister and brother in law are going to take it seriously - they might even get mad at me, but I just have this knot in my stomach, this gut feeling that this needs to be looked into. What do you guys think?

Posted 1/8/2012 5:31 PM (GMT 0)
Hey Border,
I know exactly how you feel. My sister's daughter I wonder about too.

It's the whole testing thing that is the hassle.

What test? Which one would give a true reading if someone was born with it.

Your sister's symptoms are even a bigger give away than brother in law.
don't ya think?

Has she been tested?

One thing for sure I would do before I had anyone tested is give them the teasel root and the japaneese knotweed tincture twice a day dropper for 7 days and THEN test them.

some how that pulls thing up to surface.

Nothing is more frustrating than IFFY test results when you know you smell something serious.

I got the metametrix stool test or my sister to take and that will cost about $399 to do but I think finding parasites is a cheep way to show probable cause for the Igenex $$$.

And you have to deal with the parasites anyway so may as well get that one out the way. There is no other stool test that my doctor would trust for parasites. not even Doctors data.

I know that knot and gut feeling. It is very disturbing and frustrating. Keep us posted. I will let you know about my sister too.
Posted 1/8/2012 7:44 PM (GMT 0)
This is so tricky.

Given what we've been through getting diagnosed, and realizing the curious nature of Lyme symptoms, it is hard not to be on the look out for Lyme and see it pretty much everywhere.

But people need to come to their own conclusions. You have to pick your time to talk about it. You don't want to keep harping on about it and make them deaf to your concerns.

Wait until they mention their health problems, or ask you what you think. Or you could appeal to them, asking them to just look into it for your sake.

Problem is, getting a diagnosis for Lyme is often so difficult, you have to really want to find out to pursue it fully!

Just bide your time and seize your opportunity to educate them.
Posted 1/8/2012 8:06 PM (GMT 0)
There are so many things happening to so many people it's hard to say what is what.

My youngest son was dx with J-Diabetes when he was 8 months old. I can find no diabetes in any family line. So why?

When they are so young I feel it best to treat symptoms. After watching my youngest brother go thru all he did due to a birth defect and my son, I'm not one to put little ones thru any more then they have to.

I'm not saying to ignore your gut about the possible Lyme and your nephew just keep an eye out and be ready to "catch" them when they need. Right now being his understanding Aunt maybe more important then anything, espically if both parents are not feeling 100%.

Hope all works out for your nephew.
Posted 1/8/2012 8:21 PM (GMT 0)
Yikes! more similar stories and all too familiar...

After I started antibios treatment for LD two months ago, I did have my young child tested - western blot and showed positive in a couple bands (I forgot which ones). During my LLMD visit, the LLMD was ultimately concerned about my child too which is a good thing.  If we overlooked this as something else, I think we would see her symptoms getting worse.

My child has more vague symptoms than I but does have asthma, shortness of breath, sinus problems,anxiety and achy muscles for several years. treatment under the LLMD now is for some yeast stuff and also started Cefrin. So far so good but we just started this...

Just within the last year, I've been seeing more and more LD children treated with low dose, short duration antiobios that result in either relapse or just returning to the same round. These are folks that are NOT connected with a LLMD just regular MD.  Folks really need to get more aware.  I hate seeing kids sick!

 

Posted 1/10/2012 1:56 AM (GMT 0)
Hi
I am an old lymie who occasionally comes to visit.

My daughter was born with congnetial lyme. (from me.) My body tried to abort her. I spent half? of my pregnancy in bed with occasional hopital stays.

I noticed you said he was a happy baby.

My daughter screamed for two years and three months day and night. She then must have gone into remission. Then 2nd grade she got sick rashes hard to walk. wanted to sleep 24 hours etc..

Phenomenol young pediatrician smart as a whip. treated her "right" then she (the pediatrician) mysteriously disappeared, to this day I wonder if it was because she helped my girl. The office said only "she does not work here anymore." I think I heard she was fired. The woman was brilliant.

Then she went to my lyme dr. She had short but intense herxes but she is fine now. She did an excellent job at getting well.

I like the advice given here. Someday maybe there will be an accurate test for this insidious disease. Of course there really is not an accurate test for MS and other autoimmune disases. We were blessed (kind of an oxymoron) but we had the pretty red circles.
Posted 1/10/2012 8:35 PM (GMT 0)
I would carefully suggest that they look through Dr. Charles Ray Jones' site (www.drjoneskids.com) - he is very well known for his treatment of children and pregnant mothers who have Lyme and other tick-borne infections.

I too was infected while I was pregnant and both of my children showed signs of infections while growing up. I wish someone had known what to suggest to me back then.
Posted 1/11/2012 12:13 AM (GMT 0)
does anyone know about that neuroscuence labs test for lymes. I wonder if that would be good for kids?

I'm not sure how it works or what it costs.

I wonder if a baby picked up lyme while pregnant if it would be born with parasites.

after finding out what I did and seeing the significant change after treating the parasites I want to give
everyone in my family that $$$ metagenix stool test. It was the best proof of major problems going on.
Posted 1/11/2012 12:13 AM (GMT 0)
does anyone know about that neuroscuence labs test for lymes. I wonder if that would be good for kids?

I'm not sure how it works or what it costs.

I wonder if a baby picked up lyme while pregnant if it would be born with parasites.

after finding out what I did and seeing the significant change after treating the parasites I want to give
everyone in my family that $$$ metagenix stool test. It was the best proof of major problems going on.
Posted 1/11/2012 11:57 PM (GMT 0)
If I have chronic Lyme, I feel quite certain others in my family have it too. No one complains of symptoms, but if I was bitten it was probably at our family property and we've all been going out there for 30 years.

My brother's 2 year old has spent a ton of time out there, and guess what?! He's majorly hyperactive, has had countless colds, is difficult to put to sleep, is a cranky grouch sometimes, and was dx with ASTHMA! No one in our family has allergies or asthma! He does the nebulizer too. I would LOVE to get him tested, for Lyme, mold, et al, but I'm sure they'd think I was crazy, and even moreso, if he tested positive they'd DEFINITELY choose the conservative mainstream approach to treatment.

My mom spends soooooo much time out there, she has to have it. One of my sisters had EBV and CSV (is that right) and I will bet she does too. I bet they are carriers or something at least, even if they aren't outwardly symptomatic.

But at this point, I just need to confirm if I have Lyme or confections, and see if I can get my health back. If SpiroStat and/or an LLMD confirm Lyme/chronic Lyme, I will at least ask them towatch Under Our Skin.
Posted 1/13/2012 12:03 AM (GMT 0)
His symptoms also are common with food allergies. I would first get him tested by an MD for gluten intolerance. Rule other possibilities out before going the Lyme route
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