"i don't know anyone diagnosed with lyme'

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Posted by carolyn on 02/28/02 - 15:27:46
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i probably had this all my life, looks like this is definatlely what i got as a teen, and know for sure i had this since ten years ago after about a year ago finding a photo of me with a textbook bulls eye rash taken on vacaation on nantucket island.  also know i got it at least three more times since then.  "oh, is that what a bullseye rash looks like?!"  

most drs don't know what it is or how to diagnose it.  my  kids had it all their life and had i not found that photo, would never have gotten them diagnosed.  my husband got it twenty years ago but was diagnosed as viral encephalitis.  a stomach viris two years ago brought back  the encepahalitis headaches, and last yr, i finnally talked him into getting tested.

5 yrs ago when i ws acutely ill with this, i would laugh at my  husband when he would tell me to wear long pants tucked into socks if i'm going for a walk on the canal, telling him he was paranoid.  after becoming deathly ill with it and learning what the disease is and the politics surrounding it, i know what it is and can recognize it better  than mosst drs.

there are 300 known strains in the u.s. some more deadly than others.  despite what niemans said in that article, we do have babesia in PA and it is increasing.  this is why we are seeing more and more people very sick with this. NJ and Conn. will be testing the ticks this spring  to see waht coinfections the ticks there are carrying.  PA is backward, and no testing will be done. what strain you get, how often you.ve gotton it, weather ou have a coinfection, fluctuatinons in your immune system,genetics, all determine how sick yuo get from  it.  it is a very tricky disease and affects us all differently.  my husbands only health complaint all thesse yrs was an increase in alergies.  it can go dormant for years and then hit gradually,  or  hit hard  triggered by illness, accident, or stress.

60% never get the rassh and it does not always take the classic form.  lots of people are misdiagnosed w/fibromyalgia (does not exist, it is usually lyme), m.s., cfs, depression, bipolar disorder, psychiatric problems, ADD, hyperactivity, autism, lupus, asthma and alergies, rhuematiod arthritis, jra, alzheimers, and als. between one in five and one in four people living in lyme endemic areas  have the disease .  most undiagnosed, or misdiagnosed.

since we usually don't look sick, you would not know unless we told you.  i was a very private person who was afraid of strangers, but after this happened to me, i talk to everyone and anyone about it.  that is why i now hear about so many poeple who have this, know someone who has this or is misdiagnosed with fibromyalgia or ms.

someone from this board recently emailed me that partly as a result of my lyme posts, and partly as a result of his drs request, he got tested for it.  he had been sick for a while.  his blood test came back boarderline and his dr (we call them ducks) was treating it as a neg, and leading him to believe there was no treatment for his symptoms.  a boarderline result is like saying you are only a tiny bit pregnant.  he is looking into further testing.

the vaccine was known to be flawes before it was released.  it was released anyway.  i know someone who took part in the vaccine trials, healthy before, nasty auto-immune arthritis after the vaccine.  also someone in my support group who was damaged by the vaccine.  they just pulled the vaccine citing "allergic reactions", but still deny it can cause atuo-immune arthritis.

i posted a short while ago that homeless people should be tested for this.  thats obvious.  they live outside and get bitten by lots of stuff.  some people are probably homeless as a result of getting sick but undiagnosed.  my support group leader just sent me an article about a man who for yrs cut grass for the state of rhode island.  he contracted lyme while on the job, and now is currently homeless.

i know tons of people who have or have had this. friends, relatives, nieghbors, several of my husbands buisiness assoc.  one died from it.  only a few of us get dealthly ill from it, but i am hearing about more and more. this disease really sucks!  oh well, enough for now.  have fun with your baby!!!

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