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Posted by carolyn on 01/15/02 - 16:18:16
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it is very common where i live.  lots of people get the rash, get treated and are fine.  but many people don't get the rash or do not recognize what it is, or we get one of the cooinfections and don't get well with standard treatment.  in my case, it appears that i was born with it.  there is no question that this is what i got as a teen.  there are so many people who are misdagnosed.  about a month ago there was a segment on the news about a new disease called fibromyalgia that is affecting a lot of women in are area.  it made me sick to watch it.  the pain they feel is very real, and the woman taking oxycontin needs to, but she also needs extended treatment with antibiotics. fibromyalgia does not exist as a disease.   it simply is a collection of symptoms, muscle joint pain, sleep problems, brain fog.  it does not happen in clusters.  in the philadelphia area there is a cluster of people with fibromayalgia.  in most cases it is untreated lyme.  there is even a support group at abington hospital where roger e nieman is head of infectious disease.  after that article in the intellegencer came out, lyme support was very crowded.  there was a lot of niemans bashing going on.  missed that one, would have liked to have been there.

the "so called"  lyme expert in my records from niemans is a dr near me who was trying to treat late stage chronic lyme patients.  the allen steere side says we don't exist.  i can't post that drs name, because they are being harrassed.  he has six kids, two sets of twins, the youngest toddlers and his son is a special needs child.  he never represented himself to me or anyone i know as a lyme expert.  he is still learning this disease himself and took profuse notes when i was seeing him.

one of his daughters got lyme.  he learned a bit about it and was willing to treat.  he soon got a reputation as a lyme dr.  people were coming from two hrs away to see him.  he was putting a lot of people on extended i.v. abx treatment because many were being cured and many had marked improvement.  insurence co's came after him and he has been burned.  only one person i know is getting treatment for late stage lyme, and his records are kept seperate from all the others and he pays out of pocket.  the last thing this dr wants to be known as is a lyme dr.

by spring of '98 when it was apparent there was something seriously wrong, a buisiness assoc of my husbands named Tim who told him that i have lyme and told me to go to this local dr.  my symptoms and the progression of my disease mimicked that of my mom's bone cancer and i knew what ever i had was by now killing me.  i now know about two people who were misdiagnosed with bone cancer and it turned out to be lyme.  i think that is what my mom had.  i instead decided to go to a upenn dr. because i thought i would get the best of care there.  i have since found out that they have a reputation for humiliating lyme patients.  the head of infectious disease there is quoted in news week as saying it is overdiagnosed, overtreated. most people that think they have lyme have psychiatric disorder or fibromyalgia.   he is on the allen steere side.

our friend Tim had lyme for many years and went on to get cancer.  his wife could not understand why the dr in newtown did not put him on i.v. abx. she knew people who went there and got i.v and got better.  he got to this dr too late. Tim died in nov. 1998.  that really sent me for a loop.

i also got to him too late.  i went to him in nov of '98 and i think i was the last late stage lyme patient he took on.  he put me on oral abx at first, then sent me to a local neuro.  i did not know what was going on, but he sent me to this dr because he needed a specalist to back up the lyme dx so i could get the i.v.'s i needed.  the neuro used to know what lyme is, but now does not. lots of people in lyme support know and hate that man.  he ws nasty to me, did not do much of an exam, and put lies in my records, then sent me to other specialists who were abusive.  not what i needed at the time.

from there the dr in newtown sent me an i.d. specalist. the first visit he was going to put me on a strong oral abx but wanted to see my records first and come back in a week.  the nest visit, he was my hero, he was putting me on i.v. right away and i'd be feeling great by june. he got me a 2 week extension from bc/bs.  i got the number of some one named Joel from the dr in newtown's bulitin board.  Joel runs a support group out in chester co and it turns out went to high school with my husband.  he is a lawyer with lyme who is disabled and cannot practice law.  he warned me that the i.d. dr will only give you so much time to get better and then freaks out at you and won't treat further.  being extremely fragile at the time, i put Joel on the phone to my husband so he would know that he has to take off work and go to the appt with me.

my husband said if he didn't think we might need this dr, five seconds into the appt he was ready to do more than just tell the guy off.  now he understood why i was coming hme from drs offices crying.  the dr yelled at me that no one has lyme after six weeks treatment,  i don't have lyme anymore, maybe i never had it to begin with and throws the LUAT test up in the air - the only pos test i had at the time - and said that test was meaningless. he sent me to churh t oget down on my knees to pray.  

from there i went to a neuro in neptune nj.  i could not afford to go out of network and this guy took insurence.  Joel warned me that of the 17 people he knew who went to this dr with neuro lyme, he told 16, including himself that they no longer had it or never had it to begin with.  the 17th he used as a research project,undertreated, and then dumped him when he did not get better.  he told me i did have it, but did not go to bat for me with insurence, i got i.v. abx for a few wks, but otherwise no treatment for two yrs.  i knew i had babesia, but he would not test or treat for it.  you need to be treated for babesia before you can get better from lyme.  i have since tested pos.  i actually think that disease is worse than lyme.  i took my husband to this neuro, and he told us he did not have it , did not need to be tested.  he has it.  i took my son to the ped neuro their after finding the photo of me with the rash and my son's pcr came back pos.  he told me the pcr was a false pos.  they don't come back false pos.  he lied and said my son had an ear infection and prescribed two wks abx.  that was just to make it difficult to sue him because 2 wks abx can be considered standard care.  i took him to a ped in jackson nj, who showed me there was so much wax in his ear , you cannot tell if he has an ear infection or not. he did not even need to see my sons pos test to know he had lyme. he was amazed that in the 6 yrs of his life, no dr had ever treated him for lyme.  from there i was not going to fool around, we took him to Dr Charles Ray Jones in new haven conn.  dr jones is the exception to the posting rule.  he does not want parents wasting there time getting their children help.  and i think he is almost trying to dare them to come after him.  if they try to take our baby dr away, all hell will break loose.  my daughter seems well after 9 mos treatment and is off abx.  my son is growing a lot better, has more energy, his muscles are getting stronger.  he has been on abx for a year, and needs to continue.

a woman who lives just across the river from me and reads lymenet, but does not post much emailed me that she thinks she knows my new lyme nieghbor.  thier kids are the same age and she is over here all the time for activities.  she also told me that my new l.l.m.d undertreats , especially cooinfections.  they are all running scared.  my nieghbor goes to the l.l.m.d in colmar.  he is expensive and i cannot afford to go to  him.  from the article, it sounds like he has political protection, but he does not.  they are all scared.  he does not do i.v.  my nieghbor has been out of work for 5 mos.  she wants i.v., but her insurence is a very bad one.  they are the one that went after the dr in newtown.

blue cross blue shield is what i have.  depending on where you live, they can be either good or horrible.  my friend in north carolina got lyme 11 yrs ago after visiting her parents in nj.  she got the rash, knew what it was, but did not get real sick.  just very minor stuff until 2 yrs ago, then it hit her hard.  her dr there was very cooperative, but does not know what this is, so she did the research herself , told him which tests and what treatment she needed.  she got nine mos of i.v. abx and mepron an expensive drug to treat babesia.  some one from texas wrote to me that bc/bs is very good there, they paid for the mos of i.v. that she needed , but in the northeast, they get away literally with murder.  Sarah, from CA had to take out a second mortgage on her home to pay for her i.v. treatment.  she is 98% better now.

no matter where i am, if i open my mouth about lyme, someone has it and still has symptoms, or they know someone that is having lots of problems from it , or they were diagnosed with fibromyalgia - could it be lyme?  it's reached the ridiculous point.  dr burrascanno is on trial now.  he is one of our best lyme drs.  if they treat for more than allen steere's 4 wk standard care, they are targeted.  if more than 15% -20% of their practice is lyme patients, they are targeted - why misdiagnosis is so popular.

an example, is a guy who comes in the library a lot.  i was talking to someone else about this, and he overheard me.  he apologized for listening in, and told me he got the bulleye, got treated and is fine.  then he told me his wife has fibromyalgia.  i told him she has lyme.  he had a hard time believing all i was telling him.  i gave him some lyme info i had in my car, and when i told him my name, he said he thinks he knows my husband.  turns out he went to hebrew classes with my husband and also summercamp in 6 grade.  one saturday my husband wasin the library with me and he was there.  he believes what i'm saying now and is bugging his wife to get tested.  i asked him if he knew any drs that i could just tell them what drugs i need and they can prescribe them.  he told me about a dr who befriended him at the gym.  he said after the 9/11-anthrax scare he was over the drs house and he had lots of cipro stashed.  actually doxy would have been a better choice, cipro can do perm damage to the central nervous system.  people on lymenet that need cipro to treat bartonella, another tick borne disease were having trouble getting it after the anthrax scare.  pharmacies were out.  drs, rich people and people with connections can get abx even when they don't need it, but lyme patients are left to fight to get meds they need.

there is a connection between lyme and autism.  small children becoming autistic after a bulleye rash, getting treated, and being normal agian.  my older brother is autistic and i strongly beleive we inherited lyme from my mother.  my current dr said she did not know she had lyme until she had children.  her second child was born very sick from it.  her other two children only have a mild version of the disease.  there is an area in nj that has a cluster of children with autism.  they are talking about getting grant money to study why this is.  nj is highly endemic for lyme.  why don't they test these kids for lyme?  we just found out that our friends third child is autistic. the older child had fevers with siezures. there house backs up to a park where there are deer.  we have deer where i live, but the mice are the biggest vector.  our friend Tim lived in the fox chase section of the city and was not much of a country boy.  birds and mice have brought this into the cities.  anyway , i think i've written a long enough book for today.  when this is all over, our drs are free to treat and our insurence has to pay for our treatment, then i promise, i'll talk about something else.

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