WPinVA
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posted
My first grader is supposed to go on a field trip to a colonial farm. I just saw a post on a Lyme site about someone else's kid who came back from the same place covered with ticks. The "farm" is partly in the woods with dirt trails through it, in other parts there are dirt trails through fields.
At first I was thinking of spraying her and all her clothing and chaperoning the trip so I could make sure she stayed on the trails, check her, etc. Now I am re-thinking the whole thing. This is not a place we would ever go on our own, but it is a school trip, and she is excited about it and doesn't want to be left out. I struggle with the balance of letting my kids live their lives vs. my fears of Lyme disease.
We live in VA, a newly-endemic area. What should I do?
Posts: 1737 | From Virginia | Registered: Aug 2011
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map1131
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Let her go and you chaperon. Got to keep the kids on the trails, single file walking. Even if you spray your child, you are still going to be worried and tick checking other children.
It will be a stressful day for you. Maybe they will let you spray the pant legs and shoes of all the children?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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surprise
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Well, say what you will,
but there are some 'woods' field trips coming up for my younger daughters in the next few years,
and I am not letting them go.
Watching a child with Lyme and trying to treat is incredibly painful and difficult.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
If you're really that worried about ticks, I would let her go and then simply inspect her for ticks when she gets home. Are you really going to keep your kids away from nature for the fear of ticks? That sounds like a worse fate than having Lyme!
Posts: 177 | From Ohio | Registered: Aug 2012
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tickled1
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Maybe present the post you saw to the school and insist that they take measures to protect the children and even have them send info home to parents about what precautionary measures to take to protect their children like tucking pants into socks and wearing insect repellent with DEET.
This is not far fetched or being overly-cautious. I live in MA and all sports practices are cancelled indefinitely until we get 2 hard frosts due to EEE and West Nile causing deaths in our area. I don't see how exposure to ticks is any different and precautions need to be taken.
If the school is bringing kids to these places it is their responsibility to inform parents of how to protect their kids. Point this out to them!
I allowed my 1st grader to participate in a hiking program over the summer and the hike leader instructed everyone to tuck pants into socks and wear long sleaves and hats and wear insect repellant. It was only a 3 hr. per day program and I took precautionary measures and checked her as soon as she got home.
Posts: 2541 | From Northeast | Registered: Jan 2008
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surprise
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My kids play outside. They have a good life provided.
I'm not going to defend this. The woods trip I'm referring to is overnight.
Unless you've treated and raised your own child with Lyme and co-infections, it may be harder to see the understanding
for being overprotective.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I would make sure they were sprayed down with DEET before leaving, wear appropriate clothing and do a thorough tick check when they get back while she tells you about all the fun she had!
My 9yo son, husband and myself are all currently under treatment for lyme & co, but I can't imagine life without being outside as much as possible. That's just the way we are though, everybody has their preferences for the kinds of activities they like to do, and whether they prefer outside or inside.
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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quote:Originally posted by tickled1: This is not far fetched or being overly-cautious. I live in MA and all sports practices are cancelled indefinitely until we get 2 hard frosts due to EEE and West Nile causing deaths in our area. I don't see how exposure to ticks is any different and precautions need to be taken.
FORTY THOUSAND people die every year due to car accidents. Have they banned cars in MA?
I don't mean to be insensitive to the very real and legitimate concern about ticks, but if we're going to try to be protected against every threat, then life will certainly be miserable!
I think it's perfectly reasonable to take common sense precautions for both ticks and cars (and a lot of other things). However, hiding in the house and giving up our active lives certainly isn't the answer.
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
I agree that if you let your child go, then go along!
But for me .. no way.
Moving to General Support
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ellen101
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I would let her go and chaperone. But, be prepared she is going to want to be with her friends. If her friends are veering off the trail than she will want to do so as well.
I agree with some of the others. You can't be afraid to be outside and still enjoy nature. Kids especially need to be able to do this. I have read how some have not let their children play soccer etc due to the fear of ticks.
What will you do when she becomes older and goes to friends houses? Or wanbts to go on a camping trip etc. It will only get harder as she grows. Taking precautions and being vigilant are the best you can do.
Posts: 1748 | From United States | Registered: Dec 2011
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WPinVA
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Thanks so much to everyone who gave very thoughtful responses. There are a lot of different ways to look at this and I appreciate everyone's responses. I thought everyone was going to say don't go, so I was interested to hear so many others say otherwise.
We are actually outdoors all the time - at the pool, at playgrounds, in backyards, playing soccer, walking in the neighbhorhood, always with appropriate precautions such as bug spray, tick checks, and keeping the kids away from undergrowth, leaf piles and bushes. (At the same time, I would never criticize anyone who has made the decision to forego this type of activity due to Lyme.)
I just don't think ultimately I'm comfortable with a field trip through a high-risk area like woods and fields with six year olds who, as some of you have rightly pointed out, will not want to walk single file down the middle of the trail, or take other precautionary measures. I wouldn't be able to do a good tick check until several hours later since the trip is in the morning.
It's unfortunate, but this is the world we live in now. While I'm thankful that Lyme isn't as bad here (yet) as it is in other parts of the country, it is difficult being on the leading edge of the epidemic knowing full well of the risks when no one else seems to. I did speak to the school nurse about this last year and probably will again this year.
thanks again!
Posts: 1737 | From Virginia | Registered: Aug 2011
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Lymedin2010
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Heeeeellllllll no!
With the crazy stuff I've seen and the sheer number of people who got bit, even after they have been warned.
With the hellish symptoms that I am going through and that my child is developing WHILE undergoing treatment. It would be more humane to cut off all my appendages.
I could not find it in me to say yes. There are so many other ways to have fun. Missing this would not be the end of the world, but it may be with one small and short bite.
Not worth it!!!!!!!
Posts: 2087 | From NY | Registered: Oct 2011
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kidsgotlyme
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I totally agree with you, Lymedin2010!! We quit going on our annual homeschool family camp week because we kept getting bitten by ticks. It was just too stressful for me. Everyone had to take doxy the entire time, and then I was constantly worried that my DD would pick up another co-infection.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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WPinVA
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Thanks, Lymedin2010 and kidsgotlyme. I e-mailed her teacher last night to tell her that we decided not to go. Just decided that it wasn't worth the stress and the risks. It's nice to know I'm not the only one out there making this type of decision for my kids.
Posts: 1737 | From Virginia | Registered: Aug 2011
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tickled1
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Just curious, did you tell the teacher why? If so, what did she say? Is your daughter ok with the whole thing? Does she understand?
Did you say it was an overnight thing? If I was in good enough health I guess I'd go with if it was my child so she wouldn't miss out and check her constantly. But then, who would check you?!!
Posts: 2541 | From Northeast | Registered: Jan 2008
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There are about 6,500,000 auto accidents in the USA each year; 2,900,000 people are injured in those accidents; and 44,000 die from those accidents. That is at least 15 times the number of people injured in car accidents than are infected each year by Lyme disease.
A recent article in the JAMA puts the number of DEATHS in the USA each year due to errors by Doctors at 250,000 - making your doctor and your local hospital more dangerous than the worst terrorist. In fact, doctors are the 3rd leading cause of death in the USA according to that JAMA article!
I could go on and on with the statistics, but my question to those that would not let their kid go into the woods to enjoy nature is whether you also keep them out of cars and well away from doctors?
Unfortunately, your kids are a LOT more likely to be injured or killed in your car or by your family doctor than by a tick.
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surprise
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Don't mean to be a smart mouth, but at least if we get into a car accident,
My auto insurance and medical insurance will pick up the tab.
So far, for my daughter alone, I have spent $80,000 on health treatments due to chronic Lyme and co-infections.
I don't have anymore 401k's to break open, so I think I'll cancel her overnight trip in the woods. Like someone said, another co-infection to treat would do me in.
Of course, this is just the financial aspect, doesn't touch the family emotional pain, and pure suffering of a child.
Granted, I have post traumatic stress disorder from Lyme and co.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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quote:Originally posted by surprise: So far, for my daughter alone, I have spent $80,000 on health treatments due to chronic Lyme and co-infections.
WOW! That is a big chunk of change.
Posts: 177 | From Ohio | Registered: Aug 2012
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surprise
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Part of the large tab includes the years it took to find Lyme and co. First her, then me. Surprise!
Forever changed.
I understand the need for balance in life, the point being made.
But there is also our reality.
And no-one is saying children not be let outdoors! But camping and spending time in endemic areas is to proceed with caution after all we've been through.
Some of these field trips just aren't worth it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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kidsgotlyme
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PatriotM- Usually I just agree to disagree with someone, but obviously you don't have a child with this illness.
This is what I KNOW. We have around 50 children in our local homeschool group. I know of at least 5 of them that have Lyme and Co. I would be willing to bet a paycheck that their are at least 2 more whose parents are in denial about their own child's lyme symptoms. In this same group of people, there are two Dads with lyme. There is at least one child in this group that has graduated that had lyme and was successfully treated.
There is another young lady that graduated from this SAME group that has been trying to get a diagnosis of her illness for 10 years. The doctors suspected that she had lyme years ago but because she didn't have the rash they didn't treat her. She is now having trouble finishing college.
I was in another homeschool group years ago and I am friends with three families that have all had at least one child with lyme. One of them is now disabled from lyme.
Back to my current group: Not ONE of these families have been in a serious car accident since I've known any of them, thank God!!
Now, after all of that, do you REALLY think that we are being paranoid by not letting our children go tromp around in the woods full of deer? Give us a little credit.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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map1131
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I have grandchildren that I absolutely ticked checked every time we took them to our lake home. I wouldn't let my husband give them nightly baths because I didn't trust him to do a good tick check.
Finally my husband decided to sell my nightmare(that's where I contacted lyme & co). I was obsessed with fear. I was happy to say goodbye.
One day my oldest grandson showed up at my door in the city with a deer tick embedded in his neck. I was able to zoom in on that tick before he got in the front door. I ran to get the tweezer.
By the time I got back to him he had pulled the tick off and it was on my patio somewhere. I've worried for good reason about him and suspicious sx that come and go for years. My hands are tied and I can do nothing to ease my heart.
My grandchildren to this day still ask why we sold our lake home? They say it was there favorite place on earth. I feel guilty that my fears helped in taking away something so special.
My point....you don't have to be in the woods or at a lake home to meet up with this danger. It's everywhere.
The boys also like to make fun of Nana chasing them all over the lake property with a can of Off. Tick crazy lady, that's what they called me.
I think the boys are right...I was and am toooooooooooooo tick crazy.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Yes, I think that you're being paranoid (your word, not mine), although I would have probably used a phrase like overly-cautious instead of paranoid. I checked the Connecticut Government website. According to the info there, Connecticut has the highest rate of Lyme infection in the country. Even in Connecticut, the rate of Lyme infection in 2011 (the latest year for which statistics are available and the year with the highest rate to date) is only 89.3 cases per 100,000 population (or less than 1 in 1,000). The anecdotal information that you provided (7 in 50) is comparable to a rate of 14,000 per 100,000 population; or more than 156 times the highest rate in the USA.
Therefore, I'd say that your experience is an anomaly. Furthermore, with the highest rate of infection per year in the USA at less than 1 in 1,000 population, I think the chance of a kid getting infected on a relatively short trip to the woods when precautions are being taken and when the parent would carefully check the kid for ticks upon their return is EXTREMELY low.
When we, or a family member, has Lyme, it's easy to see ticks lurking everywhere waiting to infect us. However, the truth is that Lyme is still relatively rare, which is why it's not being properly addressed by the medical community. If more than one in 10 people nationwide had Lyme, like in your anecdotal experience, we would hear nothing but Lyme on TV and BILLIONS would be spent to address it.
Posts: 177 | From Ohio | Registered: Aug 2012
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beaches
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Kidsgotlyme, you beat me to it responding to PatriotM but I'll respond anyway just because.
PatriotM, you said: "Unfortunately, your kids are a LOT more likely to be injured or killed in your car or by your family doctor than by a tick."
I respectfully submit to you that you have no idea what you are talking about. It is apparent that you do not have a child with this disease.
If you ever witnessed your or anyone else's child
----in agonizing, unremitting pain or unable to comprehend simple instructions or listless to the point of being unable to get out of bed or unable to balance while standing or suffering with migraines or being so dizzy the room spins or being unable to walk up or down stairs or unable to attend school or attend family functions or sleeping 23 out of 24 hours----
then perhaps you'd understand. And this is by no means an exhaustive list of the symptoms sick kids have.
Oh believe me, I could go on and on as well, and not with statistics. As we all know, statistics are very maneuverable depending on who is reporting the data. I could tell you ACTUAL facts from ACTUAL families who have lived through and are still living through the hell that is Lyme Disease.
I apologize in advance for asking you this but are you out of your mind wondering why parents of sick children would think twice about letting their kids go into the woods?? And why on earth are you asking if parents keep their kids away from doctors?
And, spending 80K is not unusual, believe it or not. We spent 40K just in one year alone treating sick kids. It's downright disgraceful though for sure.
No way, no how would I ever again allow my kids to go on a field trip like the one WP describes knowing what I know now and experiencing the hell of watching my children suffer so much for years, yes YEARS.
I do not for one minute believe that by not allowing children to go on a trip like this is somehow denying them some great life experience. There are so many other enjoyable and far safer adventures for children to partake in.
On the other hand, I do believe and KNOW for a fact that by allowing children to engage in these types of activities puts them at great risk for a potentially devastating and life-altering illness.
Sure, you can spray them down with repellants and do tick checks. Has anyone ever seen just how fast a tick can navigate up your body? I have and it's pretty shocking. And those suckers will get right into your hairline where you have not a chance in hell of ever noticing it or the rash it might leave behind on your head.
So no, not me. Never, ever again will I let my kids enter into that kind of Russian Roulette. That's what it is as far as I'm concerned.
Oh and another thing PatriotM, I know a lot more people who have been affected with tickborne disease as opposed to people who have been in fatal car accidents.
Posts: 1885 | From here | Registered: Jul 2012
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tickled1
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Balance is the key. My child spends plenty of time outdoors but I do not allow her in tall grass or brush. I check her head to toe every night and if she's been somewhere more likely to pick up ticks I check her several times a day.
Sounds like this trip that this thread is all about the kids run wild in the woods. That would not sit well with me either.
BTW, there is a campground at the Cape that recently closed down several sections of the campground due to tick infestation. This is the type of thing that needs to be done.
People need to find balance between still spending time outdoors and taking precautionary measures and staying out of brush and tall grass and doing thorough tick checks.
Most people just don't do this unless they've been impacted by Lyme. I think it would be great if education about this took place in schools and info was sent home to parents about it. Flyers should go home from the school nurse every year in my opinion.
I too have PTSD from all I've been through with this disease and I've just recently started easing up on outdoor stuff. That being said though, I have been rebitten and have found ticks on my child.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
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Patriot,
You are talking about REPORTED cases. Most cases of Lyme are not reported.
Posts: 2541 | From Northeast | Registered: Jan 2008
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quote:Originally posted by map1131: I have grandchildren that I absolutely ticked checked every time we took them to our lake home. I wouldn't let my husband give them nightly baths because I didn't trust him to do a good tick check.
Finally my husband decided to sell my nightmare(that's where I contacted lyme & co). I was obsessed with fear. I was happy to say goodbye.
One day my oldest grandson showed up at my door in the city with a deer tick embedded in his neck. I was able to zoom in on that tick before he got in the front door. I ran to get the tweezer.
By the time I got back to him he had pulled the tick off and it was on my patio somewhere. I've worried for good reason about him and suspicious sx that come and go for years. My hands are tied and I can do nothing to ease my heart.
My grandchildren to this day still ask why we sold our lake home? They say it was there favorite place on earth. I feel guilty that my fears helped in taking away something so special.
My point....you don't have to be in the woods or at a lake home to meet up with this danger. It's everywhere.
The boys also like to make fun of Nana chasing them all over the lake property with a can of Off. Tick crazy lady, that's what they called me.
I think the boys are right...I was and am toooooooooooooo tick crazy.
Pam
Wow that's a good story! And a good point!!!
I bet a lot of people get infected where they least expect it. Like I know I am always super vigilant when hiking and camping ect, but I never do tick checks after working in the yard or walking through a park.
Anymore it seems like you can get it anywhere you go
I would never want my children to miss out on childhood experiences or the great outdoors, but they are your children and you get to decide...... at least until they're teenagers! haha!
Posts: 169 | From The Poconos | Registered: Jun 2011
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quote:Originally posted by beaches: PatriotM, you said: "Unfortunately, your kids are a LOT more likely to be injured or killed in your car or by your family doctor than by a tick."
I respectfully submit to you that you have no idea what you are talking about. It is apparent that you do not have a child with this disease.
I apologize in advance for asking you this but are you out of your mind wondering why parents of sick children would think twice about letting their kids go into the woods?? And why on earth are you asking if parents keep their kids away from doctors?
So no, not me. Never, ever again will I let my kids enter into that kind of Russian Roulette. That's what it is as far as I'm concerned.
Having a child with Lyme has nothing to do with understanding the risk of getting Lyme as compared to other risks. The FACT is that a child has a MUCH higher chance of being injured in a car accident than contracting Lyme. 2,900,000 people are injured in car accidents in the USA each year and about 200,000 people are infected with Lyme (according to Lyme proponents). In addition, more people (250,000) are KILLED by their doctor making a medical error each year than are infected by Lyme.
That is why I asked if the parents that would not allow their children to play in the woods would also keep their kids out of cars and away from their doctor. Both cars and doctors are more dangerous than ticks.
Playing in the woods is NOT Russian Roulette. With Russian Roulette, you have a 1 in 6 chance of being killed each time you pull the trigger. Playing in the woods, you might have a 1 in 1,000 chance of contracting Lyme in a year (if you don't take any precautions).
Posts: 177 | From Ohio | Registered: Aug 2012
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beaches
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Having a child with Lyme has EVERYTHING to do with this topic. Unless YOU have a child with Lyme you have no idea what you are talking about.
Are you here to educate people about statistics regarding the dangers of cars and going to a doctor? You might have stumbled upon the wrong message board.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Some people are tick MAGNETS, so if you've had one tick bite, you're bound to have more. Statistics on car accidents are irrelevant.
I've had two major car accidents. Lyme destroyed my life more than the accidents did.
and for what it's worth .. I do NOT walk on grass.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
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PatriotM on what fact do you base your statement:
"Playing in the woods, you might have a 1 in 1,000 chance of contracting Lyme in a year (if you don't take any precautions)?"
I most certainly DO think "Russian Roulette," is an appropriate metaphor for playing in the woods. How do YOU know for a fact that some kid playing in the woods won't ultimately succumb to Lyme, Erlichia, Anaplasmosis, Bartonella, RMSF, or any of the other tickborne diseases? You do not have any way of knowing that whatsoever.
Posts: 1885 | From here | Registered: Jul 2012
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surprise
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And by the way,
what the heck is so great about camping in tick and bug infested woods?!
By golly, it's like it's being compared to denying a tuition free Stanford college education when they turn 18.
Treating and living with a child who has Lyme disease is a thousand times more painful and difficult than
having it yourself.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
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I ditto that Surprise.
But someone like this could never understand that because he or she obviously is not the parent of a sick kid.
Posts: 1885 | From here | Registered: Jul 2012
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quote:Originally posted by beaches: Are you here to educate people about statistics regarding the dangers of cars and going to a doctor? You might have stumbled upon the wrong message board.
No. The point is that both cars and doctors are more dangerous than ticks. That is a fact that is not in dispute. Yet, even though cars and doctors are more dangerous that ticks, most rational people still choose to drive cars and go to the doctor. Yet, because we have Lyme, many people act irrationally as it pertains to ticks. They face greater risks with nary a worry but are obsessed with the relatively minor risk of ticks.
Think about all the other parents that are allowing their children to attend the trip to the farm. Do they not love their children? Do they not care if their children are infected with a terrible disease? Why would they allow their kids to go?
Posts: 177 | From Ohio | Registered: Aug 2012
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quote:Originally posted by beaches: I most certainly DO think "Russian Roulette," is an appropriate metaphor for playing in the woods. How do YOU know for a fact that some kid playing in the woods won't ultimately succumb to Lyme, Erlichia, Anaplasmosis, Bartonella, RMSF, or any of the other tickborne diseases? You do not have any way of knowing that whatsoever.
I really don't know what to say. Do you really believe that a kid playing in the woods has a one in six chance of being killed by a tick?
Posts: 177 | From Ohio | Registered: Aug 2012
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Think about all the other parents that are allowing their children to attend the trip to the farm. Do they not love their children? Do they not care if their children are infected with a terrible disease? Why would they allow their kids to go?
- No, they are IGNORANT of what can happen!!! They have NO CLUE.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: No, they are IGNORANT of what can happen!!! They have NO CLUE.
EXACTLY! They are ignorant about the risk of their kids contracting Lyme because the chance of that happening is so low. If lots of kids were getting a horrible disease from playing outdoors or in the woods, it would be all over the news and parents would know about it. However, the reality is that it is still a relatively rare disease and therefore most parents don't perceive a risk.
Many of us with Lyme perceive the risk to be very high, when it is not.
Posts: 177 | From Ohio | Registered: Aug 2012
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surprise
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Example: Pamela Weintraub, author of Cure Unknown, after dealing with Lyme with her children:
No way was she staying in her beautiful house in CT backed up to the woods-
Packed it up and moved to a concrete condominium high rise.
In her book, packed with facts and statistics, it is stated Lyme is an epidemic.
I believe that. And I come here and hang out with people on Lyme net who know it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I just wanted to weigh in - both my kids have Lyme, and I do too. In addition to probably having it congenitally, they have both had tick bites.
The first one to get a tick bit was diagnosed with a bull's eye rash. She was 16 months old at the time. We never saw the tick. Her outside "exposure" was pretty much limited to our backyard, our frontyard, and the occasional walk in the stroller.
My other one has an attached tick from her preschool playground.
We live very close to the woods, and there are dear EVERYWHERE here. As in, can't pull into your driveway without honking the horn.
If I keep them out of the woods (I agree with precautions such as tucked in pants, etc, of course), I might as well keep them out of our backyard, and I won't do that.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
It's kind of ironic and sad. The webpage link you listed is covered with beautiful pictures of tall grass, wild animals, and the great outdoors. Yet, Pamela Weintraub has vowed never to leave the concrete jungle again. I guess all she has left are pictures of the great outdoors.
Posts: 177 | From Ohio | Registered: Aug 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
No, Lyme disease taking down your entire family is sad.
I posted Pamela Weintraub's 2012 lecture because it has pertinent facts, and
I thought it was written well and meaningful about her experience with her family- thought it might be enlightening
to someone who has not experienced this with their own children.
Anyway, this is just getting frustrating to me at this point. I sincerely hope Lyme never takes down any children in your life.
Lastly, again, no-one is saying lock the children indoors full time.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I am literally in shock at this conversation. For all of you out there who are dealing with the same situation as my family, (HUGS) to you. I never thought that I would have to deal with the same kind of ignorance about LD on this board that I encounter on a daily basis in my real life.
PatriotM, I suspect that you will have to get the last word out of this but I will not be back to see it. My wish would be for you to just drop it because you have no idea what we have been through. It makes it very hard for us Moms(or Dads) to sit back and read what you have written without getting upset and responding in kind.
Maybe this response is not appropriate on this forum, but I can't help my reaction. I don't normally argue with people that I don't really know in person but this is supposed to be a safe place for people like me to come to without getting the same bull that we get in real life.
I understand what you are trying to say here, Patriot. The problem is that we are not buying it. We all have seen so much terrible devastation from this disease. I wish so bad that you were right. From where I'm standing though, you are not.
We don't walk on the grass much either. Walking under trees is a little stressful also. Do you think I'm crazy? I don't really care.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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I agree that having lyme affect your entire family, or a child, or anyone for that matter, is very sad. I also 100% support your right to decide how you will lead your life and how you will raise your children. If you want to avoid walking on grass or stay away from trees, that is certainly your choice.
Please take note that I did not start this topic, I merely responded with my opinion. Furthermore, if you will go back and read the responses, you'll see that at more than half of the people responding said that they would send their child on the trip. So, I am certainly not in the minority on this issue, nor do I think that we are all "ignorant".
I presented FACTUAL statistics to show that there are many other threats that are at least as dangerous to our children (and ourselves) as ticks and that we routinely accept those risks.
No-one is arguing that having a kid with lyme isn't terrible. I'm absolutely sure that parents that have kids killed or paralyzed in car accidents and parents that have kids killed by their physicians through errors also feel that their experience is terrible. I have lyme myself and like everyone else on this forum know that it is miserable.
Posts: 177 | From Ohio | Registered: Aug 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
It wasn't factual, the CDC itself says 90% of Lyme cases go unreported.
And, did you read about the white mice and acorn issue for the year 2012 in the Pamela Weintraub article?
So your statistics and facts are incorrect.
But I think it is more the lack of sensitivity here.
Anyway, I'm done on this thread as well.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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I believe that the statistics I used were factual. I used the number of new lyme cases each year at 200,000, which is 10 times the number of 20,000 that I saw that was reported. However, even if we use Pamela's number of 300,000 (which is 10 times the number of 30,000 that she's using), then we still have less than 1 in 1,000 Americans infected in the worst year to date, which is what I said.
Posts: 177 | From Ohio | Registered: Aug 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Patriot,
WPinVA is in a situation where she would not be able to check her child within a reasonable amount of time to protect her.
Your statistics ARE wrong. If I veer even slightly off SHORT grass or pavement I pick up ticks. It is true that some people are tick magnets and I'm one of them.
WPinVA read a post about kids being covered in ticks after visiting this particular place. The school should be more conscientious about this! It is not fair that WPinVA was put in this situation to have to choose to withold this activity from her child. The school should be more educated on TBI prevention!
If I could not be there with my child I would not let her go either if I could not check her within a reasonable amount of time KNOWING for a FACT that this particular place is infested with ticks.
Remember what I said about a campground near me closing areas that are ifested with ticks? Your statistics don't apply in these situations.
After watching a child suffer with Lyme why would they put their child in harm's way. I believe controlled outdoor activities are necessary and healthy for kids but this particular activity isn't safe and the school should be made aware of why.
Posts: 2541 | From Northeast | Registered: Jan 2008
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I am sad that this threat has turned into such a debate, but even so, if reading this helps even one other person to make a good decision on this difficult topic, then it would still be worth it.
Reading everyone's comments did help me to decide to keep my daughter home that day. She took the news pretty well. She was upset at first but then decided that a special morning outing with Mommy would more than make up for it. The teacher said she understood as well. I suggested to her that she distribute info on Lyme prevention to all the other families. I referred her to the school nurse (whom I've already provided info to) or offered to give her some myself. I hope she does.
I usually don't like to get into debates on here but this is such an important topic, so I'm going to wade into this a bit:
We can get into a lot of trouble with analogies, as they can be used to support anything. But to go with the cars one that's already out there, yes, cars are somewhat dangerous but I don't let my kids play in traffic either. Yes, there are doctors who make errors, but I pick my kids' doctors extremely carefully, look at ratings, get recommendations, etc., and I and have no qualms about changing doctors/hospitals if we need to. And we need to drive in cars and go to doctors. We just don't need to go in the woods! There are other ways to live our lives and other safer places to be outside.
Dealing with the risk of Lyme, as with other risks in life, is a risk-benefit analysis. With this field trip, the risks were too high to justify going on the trip, given that what's really the big deal about one foray into the woods? Is it really worth it? Especially when neither of us is going to be having much fun, given how stressed we will be about the fear of ticks.
My kids are afraid of ticks too, not to the extent I am but with good reason after seeing their mom ill and incapacitated from this illness for over a year. Missing one field trip is a lot less traumatic than the effect my illness has had on them, and on our family as a whole. I don't even want to think about what it would be like if they got sick and my heart goes out to all the parents on here dealing with Lyme with your kids.
So, in my risk-benefit analysis, there just weren't enough up sides to this trip to justify going into a high-risk area in a Lyme-endemic area with my six year old.
Posts: 1737 | From Virginia | Registered: Aug 2011
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quote:Originally posted by tickled1: It is not fair that WPinVA was put in this situation to have to choose to withold this activity from her child. The school should be more educated on TBI prevention!
I believe that it is fair. In fact, I can't think of anything more fair. WPinVA was able to take whatever information she had and make a decision that was right for her family. The other parents in the school were able to do the same. What would be totally unfair would be to deny all the children the ability to take this trip because one parent objects (which WPinVA did not do).
If we demand 100% safety for every activity, no-one would ever be able to leave their houses.
Posts: 177 | From Ohio | Registered: Aug 2012
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quote:Originally posted by WPinVA: And we need to drive in cars and go to doctors. We just don't need to go in the woods! There are other ways to live our lives and other safer places to be outside.
Dealing with the risk of Lyme, as with other risks in life, is a risk-benefit analysis. With this field trip, the risks were too high to justify going on the trip, given that what's really the big deal about one foray into the woods? Is it really worth it? Especially when neither of us is going to be having much fun, given how stressed we will be about the fear of ticks..... So, in my risk-benefit analysis, there just weren't enough up sides to this trip to justify going into a high-risk area in a Lyme-endemic area with my six year old.
You made some very good points! The risk-benefit analysis is exactly the point I was trying to make. Knowing the factual statistical risks can provide some perspective, but as you said you don't HAVE to go into the woods. I also like your response that neither you nor your child would really enjoy the trip because of your fear of lyme - so why go? I agree 100%!
Posts: 177 | From Ohio | Registered: Aug 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
The other parents don't know any better and are uninformed which is why I'm saying the school should provide the information to the parents that the kids should wear DEET for this field trip and that a thorough tick check needs to take place when the kids get home.
Parents assume schools wouldn't put their kids in a dangerous situation. All it would take is a simple note from the school to parents that kids should take precautionary measures for this field trip. That would be the responsible thing for the school to do but they probably are not aware of the risks as well so it is good that WPinVA made them aware. Maybe from now on they will recommend parents apply repellant for these types of trips and do tick checks. It should be simple and should be common sense but unfortunately it's not.
No one's demanding 100% safety. Just a recommendation from the school to the parents to apply repellant and then for chaperones to keep kids out of brush and tall grass I feel would be sufficient. Also the recommendation to do a tick check at home.
WP,is this an overnight trip? If not, maybe you could go along and take precautionary measures?
Posts: 2541 | From Northeast | Registered: Jan 2008
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quote:Originally posted by tickled1: The other parents don't know any better and are uninformed which is why I'm saying the school should provide the information to the parents that the kids should wear DEET for this field trip and that a thorough tick check needs to take place when the kids get home.
I agree - that is a very reasonable suggestion.
Posts: 177 | From Ohio | Registered: Aug 2012
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