newyork, flags, lyme


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Posted by carolyn on 01/16/02 - 15:46:48
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hi
bill,
i love new york.  we don't get out much , but we've been to new york since 9-11.  i say, put your money where your mouth is and support the new york economy.  if you already have a flag,and you wnat to, go ahead and display it, i've been partial to the betsey ross flag since kindergarten.  or if you have fabric , make your own.  but the plastic and nylon junk flags that people attach to there cars seems ridiculous to me.  they are ugly, polute the earth to make, and have a short shelf life then get tossed into the landfills.  ive already seen two dead ones on the side of the road.  and those novelty flags that people lined their front lawns with.  i think halloween decorations would have been more comforting to small children at halloween than flags everywhere.  but i always seem to have the unpopular opinion.

as for moving. i would like to , lots of bad memories.  but the house is not in sellable condition and my husbands buisiness is here.  ironically, we bought the house for the location.  i like driving along the river and it is only one block from the canal. there are lots of big trees in the nieghborhood and all the houses are different.  ours is a beat tiny 50's rancher that was a fixer upper 14 yrs ago when we bought it.  i said no to it when i first saw it but then my husband showed me the large , private backyard w/southern exposure perfect for a garden.  and achitectural design has been my hobby since i was a kid.  we will probably be able to do some renovation next year. my kids still play outside, we still go for bike rides along the canal and hikes, but i do worry about reinfection.

but even if we could move, i would still be sick, the dr harrassment would still be going on. the whole tristate area is really bad.  i'm not sure if we beat out westchester county ny or lyme conn. for 2nd most endemic area.  every state along the east coast is risky.  now they are saying it is just as prevalent in the south as it is in the north.  michigan and northern ca are also highly endemic.  they used to say they did not have lyme in ca, but they had a cluster of people in northern ca and someone decided to test the ticks.  also they have a strain of babesia that is different than the b.macroti strain in the east, but most labs don't test for it.  Igenex labs in palo alto is an excellent lab, but eugene shapiro recently tried to have it shut down.  that was where i got the pos LUAT test from, the only pos test i had to go own for a while, but that was done away with last april.  i guess it was helping too many people get diagnosed.

there is lyme in nyc.  a 30 year old emt got it from helping a homeless man who was infested with ticks.  she is disabled from the disease, but in a dispute with the city to get- disability?workerscomp?  i forgot which.  which brings me to the seemingly radical idea that homeless people should be screened for the disease.  they sleep outside, and it may be why some of them are homeless to begin with.

a lot of young families recently moved into our neighborhood.  i told these moms what happened to us, and that they are at risk, and if they get cooinfections or become late stage, no drs to dx or treat.  one even had a cousin in jackson nj who had it for ten years.  she ended up at jersey shore med center and for a while they did not think she was going to make it.  what cured her was an illness with a very high fever.  after that, she said she was like a different person, active and happy and started playing basketball.  but people w/lyme have tried contracting malaria under controlled conditions.  they felt better for awhile, but it came back.  but no one seems to wnat to take this seriously because they think it won't happen to them, and now we have another whole family scrambling to get med care.

my daughter went to a small private school.  we sent her there for several reasons.  the first preschool was awlful and we had behavior problems after that.  smart teachers make smart students, but bad teachers do damage.  i felt like i had my daughter stolen away from me.  she also had undiagnosed lyme, and she needed to be in a small class.  and the sicker i got, the more important it was to me that she have the best teachers.

turns out she was in the same class and after school program as the daughter of a pediatric infectious disease specialist from '96 to last yr.  i knew she worked with aids babies and admired her for it.  she also made sure i overheard that she was at the base station at mt everest.  i'm not sure why it was so important to her that i overhear this.  my daughter says her daughter likes to brag too.  i did not know until last spring that she was a pediatric infectious disease specialist.  lyme brain, can't always put two and two together. she has an older daughter and younger son there and has contributed lots of money to the school.  she has issues and agendas.

my daughters 3rd grade teacher had been sending notes home that she is careless and forgetful and seems tired.  lyme symptoms.  when i found the photos last year, i called the school and suggested there were probably other children at the school that are also undiagnosed and maybe we could have a meeting to eduacate teachers and parents about this disease.  the response was "we are just an elemetary school, we can't do anything about this."  now i realize it would be a conflict of interest, the pediatric infectious disease specialist is from the other side.

my son starte public school that year.  i also talked to the school nurse and pricipal about it and got the same indifference.  a girl at our swim club my daughters age got this when she was 5 on a school outing.  she has baesia as well.  she missed two years of school and for a while was in a wheel chair.  her mother said she approched the school with the same response.  she said they are not the ones rocking a child crying in pain at 4 in the morning.  on lyenet someone posted that a child in nj got it on a shcool outing and sued the school. schools are liable, so maybe that is the reason?

i strongly beleive this has to be a grassroots movement, polititions aaren't helping much and i really don't know where to start but to get the info out to as many people as possible.  got to go now, someone needs tshe computer.
 


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