Re: Don't pack up for Rhode Island or Cali...agreed

[Guest guest]

i hate to say it, but you know what, the surrounding states aren't any better

from what i know or have seen. i am in NJ and live in the pine barrens, where

you can't go outside without picking up a tick or two...

things are in such a poor state here, that even with my " excellent " insuarance,

i have not had one bit of lyme treatment covered as of yet and we have been

trying for many months. prior to that, i struggled for about 12 years to get

diagnosed even, let alone attempt to receive treatment.

i had heard that states such as rhode island and california had special laws and

i immediately started looking up docs there and apartments. then i spoke to

people in those states who have the same problem as i do here in NJ. so i guess

that won't work...

i have even heard that mexico is a better place to get treatment because so many

workers supposedly contract the disease while in the states and due to the state

of things, they do not get treatment until returning home. yet, now i have even

spoken to a number of people not only in mexico, but also canada and some

european countries who are in the same mess and were considering coming here!

we are all so desperate and some of us are willing to go anywhere, if we can

afford it(or our debt can afford it...). unfortunately, just as there is no

magic cure, there is also no magic place where these issues and controversies do

not exist.

please no one get sucked into that the grass is greener on the other side thing,

because you will only be dissapointed. we all find our ways to getting help, if

we can that is and hopefully we find things that can make our lives better.

i thought it was interesting what you said about the suicide over insurance,

because i myself have been pushed to the brink due to their policies of fraud

and singling out expensive patients. i told my bf that i would do it in front

of their front door so that every employee would know that they-and their

company-have all taken a part in destroying a person for greedy reasons.

-jen

ps-i have been seeing 2 LLMD's that are collaborating on my case for the past 6

months since my untreated illness led to seizures and severe cognitive and other

neuro. problems. anywho, the neurologist has been working on trying to get me

IV therapy, going as far as to send me up to columbia in NYC for a spect brain

scan to prove the neurological component of the lyme truly existed.

he has been talking about IV constantly all the time i have been seeing him,

then a few weeks ago, my bf and i go up there and he is acting totally different

and claims i am in " good condition " , though i am bedridden most of the time and

very ill, and especially that day, i was sooo ill. anywho, he scrambled with

all these excuses and said that i was sick from EBV(which he then agreed with me

that almost EVERYONE has!), that i had already been treated for lyme(which never

happened!), that i was on enuf meds, etc.

it was really weird and he would not look us in the eye. this is a man who say

down and told me that he would do whatever he needed to to help me, dispute the

insurance company, but i guess he changed his mind... we were crushed.

however, my other LLMD was not one bit suprised and insinuated that it had to do

with the insurance company probably, and i think she lost some respect for the

guy.

she gave me the name of an infectious disease doc with my insurance who she said

may help me. i hope someone will soon! if anyone is around here and knows of

good docs in NJ, PA, NY, DE, etc, please let me know!

thanks!

-jen

Doyle-Torrey <klcst@...> wrote:

Unfortunately, Rhode Island is in a terrible state for Lyme care. You are right

they have the Blue Cross Blue Shield Resolution that was passed, but

unfortunately those in the Lyme community that worked on the bill thought it was

alright to not tighten up the language to ensure care, in spite of other Lyme

advocates concerns over this. There has to be a medical necessity, and because

this bill did not give this total discretion to the treating physicians, the

insurance companies picked up on this weakness in the bill and they are deeming

whether or not a patient needs this kind of care. Lyme doctors have been forced

to move their practices to surrounding states, and people are left with no care

unless they can afford to go out of state, which most cannot. There have been

several suicides that the families claim are because of this insurance mess. It

is very sad....