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Posted by carolyn on 03/12/02 - 14:05:57
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as the perpetually confused one, not sure exactly what you are saying, but it sounded comforting.

my purposes of the lyme posts.  approx 1 in 4 people in lyme endemic areas have the disease, but most do not know it.  that means that people here have it, one wrote to me about a month ago to tell me partially as a result of my posts, he got himself tested and it came back borderline, which basically means he's got it, just not producing a strong antibody response, which is common if you've had it for a while.  my antibdy tests come back neg, but no question i have it as well as babesia.  i have a slew of pos pcr's and now turned up photos of me with the rash, yet for years, could not get med care and upenn drs were just going to let me die from this.

it appears that i was born with it, got it again throughout my life.  went to the phila folk fest when i was 19, came home with a throat infection that would not go away, so they just took my tonsils out.  reccurrent ear infectoins and other stuff since.  now i know it was lyme.  it took me more than a yr to talk my own husband into getting tested.  his pcr was pos.  he's had it for 20 yrs and has been reinfecting me.  

you organize the gathering on the mountain in the poconoes.  my inlaws have a vacation house up there.  know some horror stories from up there.  not as endemic as where i live, but pretty bad.  people who attend that concert are at risk.  many will get infected for the first time, many will get reinfected.  i'm trying t be the journalist who is repotring the info that is not getting put in the media.  also a historian and jr scientist.  i know the details of what it did to me, and writing about it is like writing about someone else.  i would tell my neuro that i remember i used to be different and he would tell me that that is how he could tell i was still sick.

currently , i am printing out info about lyme and autism for a childhood friend of my husbands.  we just found out that his youngest child is autistic.  thier house backs up to a park with deer.  i told them 2 yrs ago to get tested.  the rest of the family has what very well could be lyme symptoms.

a few years ago i would have been hard pressed to come up with anyone i know who has lyme.  and i was acutely ill from it myself then!  now, most of the people in my little world have it or had it and got treated early.

at a friends 40th b-party two yrs ago, i was talking to the wife of one of my husbands friends.  they live in westchester co ny.  he got the bullseye and got treated.  she didn't get the rast and did not catch it right away.  maybe got it from him.  she got treated but still has symtoms.  not too bad, doesn't have all the neuro stuff that i have.  she was nursing a 4 mos old at the time.  i assured her it isn't passed on to your child , and not passed on through breast milk because the very scientific looking info i had at that time said that.  i now know it to be untrue.  i had the psuedo-scinetific info put in med journals by the likes of eugine shapiro, alan steere, leonard sigal, pachner, dattwyler.  consultants for insurence cos.  the american lyme disease foundation is a front for insurence cos.  they put in the media that chronic lyem does not exist.  it does! and there are thousands of us and we have t fight for what little med care we get and have to pay out of pocket for most of our treatment and many of us are disabled by the disease.

oh, and my friend in westchester county probably went to what we call "ducks".  dr ted mc neil is a brittish dr who posts on lymenet.  he contracted malaria while working in africa yrs ago.  he moved t westchester co. and was practicing at the hospital there.  he thought he was having a relapse of the malaria he had several yrs back.  went to the head of infectious disease at the hospital he worked at who dx and treated him (with "standard care") for babesia and lyme disease.  a few months later he relapsed and became very sick.  instead of geting further treatment he needed from his collegue, his colleage had him fired.  dr ted is now paralized from the waist down.

the disease affects us all differntly.  my husbands only physical complaint all these yrs was an increase in allergies.  that is how lyme presented itself in him.  there are 300 strains of lyme in the us.  some more deadly than others.  how it affects you depends on genetics, what strain you got, fluctuations in your immune system, how many times you got it, coinfections, stress and accidents can trigger lyme.

it can go dormant in your system and then hit gradually or hit hard.  i think my mother's bone cancer was really lyme and they killed her with the prednisone they treated her with.  my symptoms and progression of my disease mimicked my mother's bone cancer and that is what i thought i had.  i met a woman in my drs office who's friend was told she had bone cancer and later found out it was lyme.  i posted on lymenet about it and someone said someone who posted there also was told it was bone cancer.

lyme is passed on congenitally, it is past on through breastmilk, it is a sexually transmitted disease, and it can be deadly.  it can cause strokes, and does damage to all of your organs and there is a link betwwen lyme and cancer.  it is far more common than you ever imagined.  the very few drs in the country who know what this is and will treat with more thatn the standard 4-6 wks treatment are being targeted.  the insurence co's sic the ompc after these drs and some have lost their liscence to practice med.  my dr is under a lot of pressure and unable to give me all the med care i need.  they do not take insurence, because insyurence co will go after any dr who has more than 15% of his practice made up of lyme patients or treats with longer than standard care which many of us need.  i no longer have to pay atttention to traffic lights and remember that red means stop and green means go.  i am guilty of stopping at a green light in my untreated days.

so the grass roots movement is informing as many people as possible and maybe they will tell more poeple , who will tell more........

if you know that places like yale university, upenn, mayo clinic are the very worst places to go for lyme, and people start avioding these places.  well, if they lose their costomers, they will have to change their evil ways.

i think a long enough lyme post for today.

oh, we caught Slicks band in NJ. they were fantastic!  very fun nite. posted my reveiw on
posting about music on lyme websites and lyme on music websites makes perfect sence to me.

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