Re:10 Year old with Lyme

[Guest guest]

Actually lately this group hasn't been very active... but I know I got help

here quite some time ago. My entire family was diagnosed with Lyme, Babesia,

Bartonella, and a few also have Ehrlichia (I am sure I misspelled something

there!). I was the worst at the beginning and it took a good year before we

got to Lyme. About that time, our kids were showing all kinds of symptoms.

My children are younger than yours - 6yo, 5yo, and 2yo, and my husband also

has it, but thank god, it is a milder case. We know that we started getting

very sick the fall of 2005 after a 2 week trip to New England where we stayed

on a farm in New Hampshire, and a oceanside resort in Maine at the tip of

one of the finger islands -- an area I have read a lot about with regard to

major increases in tick-borne diseases. After that point we all got very sick,

and just never seemed to recover. It took until the following August (2006)

for me to be diagnosed and my kids in September 2006. It is likely that we

had prior exposures where we lived (in Southeastern PA, Philadelphia suburbs)

and that that trip was the tipping point.

A few things regarding treatment and testing from our experiences and my

readings: our kids have been on antibiotics since September of last year.

They

started with strictly Amoxicillin, and after about 4 months, things had

gotten much better (we had a lot of behavioral issues -

depression/crying/falling

apart, impulsiveness, as well as other complaints - stomach aches,

headaches, leg pains, arm pains... and major rashes -- scratch like ones,

blotchy red

ones, etc.). If you need more on symptoms in children, let me know. After

the 4-5 months on Amox, we started treating the Bartonella (a major issue that

is underestimated or has been until recently) with Zithromax, and then added

in Malarone to treat the Babesia. It has been a long battle, and they have

had major " herxes " along the way. I am sure you know about the Jarisch

Herxeimer effect -- when the bacteria is killed, it breaks up and causes an

increase in symptoms. In fact, things really do get worse when they are being

treated, before they get better. The good news is that if you see that effect,

then you know the antibiotics are working and killing the bacteria. It can

however be very rough. We are now about 80-95% of the way, and still

struggling to get past this. I have talked to a lot of lyme doctors, and read

a lot,

and our path is not unusual. They key is to stick with it until there are no

longer the predictable " herxes " somewhere around 2 wks and 4 wks... or any

pattern of regular symptom increases, for at least 2 months symptom free,

along with a Western blot that shows no active infection, and an

elevated/restored CD57.

Regarding testing: my kids had only a few bands positive on the Western

Blot last September, however, my daughter's CD57 was 29, my 5yo son's was

actually much better (around 90), and my 2yo son's was around 70. Mine was 34,

and

my husband's was 60ish. The ones with the lowest CD57's had the least bands

positive on the Western blot and NONE of us were CDC positive. But we all

had genus specific bands for those that had them.

Since them, our Western blots have gotten increasingly positive - indicating

that the disease is being flushed out AND our immune system is responding.

Our CD57's have increased -- but it took quite some time -- only in the last

few months did we see large leaps -- my daughter is now close to 100 (from

29), and my 2yo son is 125, after dropping down to the 30's during some of the

worst herxing periods.

So, I do hope this is somewhat helpful. I have found 2 issues of the Lyme

Times to be of great help -- there is a 2005 Children's Treatment issue

_http://www.lymedisease.org/lymetime.htm_

(http://www.lymedisease.org/lymetime.htm)

which you can order at this link from CALDA. This issue goes into treatment

and symptoms, etc pretty effectively. And, I have used Burrascano's

Treatment Guidelines to help as well. Our Lyme-Doctor has been very good with

our

kids, and really monitored their symptoms, and made adjustments as required.

At a point a few months ago, we were considering the possibility of IV for my

6yo daughter because a lot of her psychiatric symptoms reappeared. Luckily

that appeared to be one of the last big herxes, and after that her CD57

starting picking up significantly -- so we are hopeful that this will not be

necessary.

I will private message you with my email in case you have any followup

questions. It has been rough, but I am grateful that there is information out

there on the internet, and that we were able to recognize this in our kids at

this age, instead of several years down the road. Good luck to you! -

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