lyme activists


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Posted by carolyn on 01/17/02 - 16:32:16
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Hi Cricket,

our support group is very politically active, but it doesn't seem to be geting us very far.  Mike Fischer is our attorny general and i am working on getting my complaints together to send to him.  but, as incredulous as it sounds, this is a government conspiracy and i don't think the gov is going to be of much help.  i just started a new med and am herxing and don't get much sleep and of course, lyme brain, so i'm having troulbe stringing thoughts and words together.

the allen steere side seems to have control of the media.  i did contact a friends mom who is very good friends with Carole Saline at phila. magazine. i called her art gallery, she was not there but i spoke to one to the guys who worked there, he ws shocked at what i told him , passed it on to Sande, who passed it on to Carole.  Carole called me, told me my story was horrendous and that another lyme victim had contacted her and she would do a story in the spring and would contact me.  the private school my daughter went to is where a lot of area drs send thier kids.  the ped. i.d. dr whose daughter was in my daughters class and after school program has established herself as a revered specialist and also gives lots of money to the school.  those of us in the lyme community know that with very very few exceptions, infectious disease specialists, rheumatologists, and neurologists are the worst to go to if you have lyme.  you have to go to a l.l.m.d. and there are very few in the country.  many have had their licience to practice med taken away, one is up for trial now, and most are scared and undertreating and even if they order you i.v. abx that you need, it is highly unlikely that your insurence will pay for it.  you have to be independently wealthy to afford to get better from this.

any way, i was in the library, and a dad from the same after school program - his daughter was a yr older and in another group - saw me.  i had a picc line in my arm at the time.  he was staring contemptuously at my picc line, and nest thing i know, the ped i.d. specialist starts showing up at the library.  she would hesitate in back of me sometimes before walking past, to see what i had on the screen, but would never say hi.  and i did not know this then, but you can click on the bar and see what websites were acessed.  she started coming into the library on a regular basis to use the computers.  she has computers at home, she is often away on buisiness trips so spends limited time with her children.  a spanish lady raises her kids. so why was she spending so much time a th library?

the spring approached so i emalied Carole some stuff, but was to sick to get together the important stuff and send it snail mail.  nest thing i know, an issue comes out featuring the best area pediatric specalist of which this woman is named best ped i.d. specialist.  i called Carole, and she said she had sent me a long email-i did not recieve it- and when i told her what an awlful woman the i.d. secialist was, she told me she came highly reccomended.  she said her editor had rejected the lyme expose because lyme articles had been done before.  now i doubt very much that phila mag would have done the article at all.  if you open up the mag, there are ads for cosmetic surgons, a full page ad for upenn health care, a full page ad for blue cross blue shield.  but i do think she had something to do w/the article done instead naming her best.

when i warned the other moms in the after school program not to get the lyme vacine, it was known to be flawed before it was released, and some healthy people who get it are getting it and ending up w/severe arthritis.  it was only released to make allen steere and yale university rich, id spec dorky husband starts showing up at school funtions wearing his yale t shirt and smirking at me.

whenever i would open my mouth to try to tell people i was in severe pain w/serious things wrong, id spec and her divorced psychologist friend would shut me up.  they saw me when i was deathly ill, eyes going out of alingnment, arms only moved in spastic jerks.  they knew i had lyme and not fibromyalgia, but around here, my chances were slim to none to get dx w/lyme.  and they saw my kids.

another mom in my daughters class also had cfs/fibromyalgia.  when i found out my fibromyalgia was really lyme, i walked up to her at a birthday party.  in no time, the ped id spec is right there.  i'm telling this poor woman that her fibromyalgia is probably lyme.  she tells me she did get the bullseye and got 4 wks treatment and now has fibromyalgia.  i told her she may need additional treatment.  she told me she had fibromyalgia before the rash.  she probably had lyme before.  6 wks doxy is the min for early infection and cross your fingers.  all the while, the ped id spec is giving me glares and giving Ann-Marie looks like don't believe the ridiculous things she is saying, i'm the expert.  she is seeing thomas jefferson drs and taking barbituates for the pain and  thinks she is getting the best of care.

anywhere i go, if i open my mouth about lyme, i meet people still suffering from it or w/the symptoms but told they have something else.  at the JS concert at the karma club in the poconoes, the two guys in front of us drove up from virginia.  when i told them about it, the guy named Pete said he had a friend who was just diagnosed with it after three years.  she is having a rough time of it, and judging by the pain she was in sounds like she is cooinfected witn babesia.  but her dr in virginia probably never heard of the cooinfectoins.  a guy i was talking to at the party after the carnagie hall concert told me he sffered from encephalitis headaches that the drs don't know what causes.  well i was quite intoxicated, it was less than a month after my suicide attempt, i was in a lot of pain and not being treated at the time and more cognitively impaired than people realized.  i just giggled at the poor guy, and told him he ws a hypochondriac.  but i was making a joke at how we have these serious things wrong and drs treat us like hypochondriacs.  i hurt his feelings, and he walked away.  but the headaches may be lyme, and it would be a good idea if he had the lab and testing info.

i knew if i posted about lyme, there would be people here who have it or suspect it. it is that prevalent. and sure enough, people emailed me about it.  a man with a son who was a floppy baby just like mine.  he had him tested at qwest labs, which is just like not having the tests done at all, but i tried.  even just recently, someone who has a relative who lives near me who has suspicious symptoms emailed me.

if you live, or vacation anywhere along the east coast - even the south- you are at high risk.  parts of michigan and california are also high risk areas.  it is all over the country though now and the cooinfectoins are also incresing.  it does not always progress the way the cdc says it does.  it can manifest itself in so many different ways.  you may only have neuropsych symptoms.  my husbands only complaint over the years until the stomach virus brought back the headaches was increse in alergies.  although i can see other things.  it can be deep in the tissues and dormant and viruses and head/neck/back injuries can trigger the symptoms.

my friend Cathy told me there is some weird conspiracy in this country to keep antibiotics away from people.  by treating my recurring ear infections with two weeks abx instead of finding out why an adult is getting ear infections, they caused the spirochetes to mutate making me sicker and harder to cure.  then the repeated infections and getting babesia nearly did me in and they still would not give me abx.  beware if you get sinus infections.  the original tuberculosis dr said if they knew then what they know today, they would have used the strongest abx to blast it out and then they would not have the abx resitent strains they have today.  anxiety/panic attacks are often caused by a bacterial infection.  but it is unlikely you will be given abx to cure it.  more likely you will be given psych meds to control the symptoms.  i was wondering why the pharmaceutical companies don't come to our rescue to get us i.v. abx, but they make there money wether they keep us sick or make us better.  medicine has become big buisiness.

gathering on the mountain is very close to where my inlaws have a vacation house.  it's actually not as bad there as it is where i live, despite more deer up there, but i can tell you horror stories of people who live/vacation up there.  i got a bulleye there in the 80's but thought it was a spider bite.  now i know what a bullseye rash looks like.  mum in law got the bullseye, but got her tail right off to a dr.  but it does not always take the classic form and 60% of people get no rash at all.  it does not necessarily progress the way the cdc says.  rash-flu-jiont pain- central nervious system involement.  i got the central nervios symtoms years and several infections before i got any joint/muscle pain.  many of us who got very sick from it are in our late 30's - 50's and unclear about when we first got sick.  we kept getting it our whole lives and then it finally hits us.  most drs don't know what this is or how to treat.  the very few who do are threatened.

eugene shapiro is a pediatric infectios disease secialist at yale universily.  he met me when we protested allen steere in phila.  he saw my picture, heard my whole story, knows what it did to us, knows i would not have gotten my kids diagnosed if i had not found that picture (or if i took them to him).  he knows we exist.  then right after that does that horrible it is over diagnsed overtreated /easily cured article in elle magazine.  shapiro recently tried - unsucessfully fortunately - to have Igenex shut down.  Christine Lynne Sanguey, a 22 yr old from the chester co support group had her story on channel 3 news, may 2000.  Christine was a happy healthy girl before she got bit.  she has tried to take her life twice.  but then they have the head of infectious disease come on and give the steere propaganda to reassure the public.

some of you may want to have some tests done just to screen.  Igenex lab in Palo Alto CA is an excellent lab.  they have an 800 no.  www.lymenet.org is a good website for lyme info.  lots of lyme websites are not good.  staying on the lyme websites is not going to get the info out.  the news media is taken over by the steere side, politicians are not helping us.


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