The Disease That Attacks Us All Every Day

Michele Paiva - 7/10/2005

Recently I had a small tick on me, what is known as a deer tick. I
visited a health board specifically geared to Lyme disease, because I
feared
I may have contracted the disease. Knock on wood, so far, it appears
through
symptoms and testing, that I did not contract Lyme Disease.

Although I was aware of Lyme Disease, and have written articles on it
in the early 90's when it was getting more prevalent, I literally, as
many
journalists do, did not keep up on all late breaking information or
communities that it effects. I wrote and researched my article, and
went on
to the next article.

Years later, I find myself back thinking about this crippling disease,
not because I've been touched by it directly, but indirectly, I've seen
the
damage that this misunderstood disease has wreaked upon so many people.

I will not go into the almost hundred symptoms that can be Lyme
disease. I won't even, at this time, go into how many other conditions
and
diagnosed diseases mimick Lyme, from Allergies, Fibromyalgia, Cardiac
Issues
and more. I just want to touch on why this is something you need to be
aware
of, and the importance of why we do not hear more about it.

I've encountered people who were so paranoid, perhaps because of their
disease or in part, because of the way they have been treated or the
way
they've seen other victims of this disease treated, that they've, with
only
basis of limited knowledge and assumptions, readily cocoon themselves
in
some psuedo protection of alienation.

What does this mean? It means that the healthcare of these people is
sadly inadequate. It means that these people are in a tight bond,
treating
everyone outside their circle as a terrorist ready to pounce upon them.

But digging a little deeper, these fears are probably and unfortunelty
valid.

The disease does affect us all. Our own healthcare system, which
includes the insurance companies as the obvious target of
irresponsibility,
turns their back on these victims. While our country spends millions of
dollars fighting for rights of others in other countries, we have
individuals in this country, from infants to senior citizens, who are
lacking in both rights and support.

In essence, if they are open and welcoming to an outsider, they stand
the chance of losing their Lyme doctors, who are their umbilical cord
to a
better quality of life. They stand the chance of being ridiculed, and
being
ostracized. Basically, like any defensive personality, they (victims)
sometimes lash out before they can be hurt.

Like a child who is neglected and abused, these people often evolve
into someone with a tough outer skin, but a soft, hurt and bruised
interior.

We have people who are fighting for their life, literally, and being
turned away from treatments or being told this is all in their heads.

This disease affects us because doctors who are knowledged in Lyme are
often the brunt of larger organizations who are said to oust them. This
leaves less MD's for the victims, and overall, less healthcare
professionals
for the general public.

Additionally, the millions of dollars that are wasted in some of the
after care of these victims, on a national level, could be best spent
on
preventative and early intervention - thus the overall dollar spent
would be
reduced, and it becomes a win-win situation.

It has been a disheartening awakening to see some victims of a
disease, which is literally eating away at them, to be so bitter and
negative. But if these very individuals were not treated with disdain,
if
their healthcare system was supportive, and if they had available
resources,
would they feel so bitter and need to put walls up to protect
themselves?
No.

It's a sad day when such walls have to be built - because though a
wall keeps one inside feeling safe, the reality is that they are
building a
prison for themselves where they will be alone, with only those like
themselves, all of which have lost empowerment.

How does this change? There are many ways to promote change, and I
plan on writing a series of articles devoted specifically to this
cause. All
articles that I write in the Lyme Series, will be available to all
media
outlets, for free and unlimited use. This is my way of volunteering my
skills as a journalist to a cause, which needs to be addressed much
more
seriously than it is right now.

I'm infuriated that if my family or myself contracted a disease, that
I'd have little resources and less options. I'm infuriated that friends
I
have who have been diagnosed with Lyme are possibly on a future roller
coaster of hell, all because they happen to be in the wrong end of the
healthcare stick. I'm willing to volunteer because this is a cause that
needs to be addressed and can easily be remedied with just a little
responsibility for those who have the power to create long-lasting
change.

There is a reason why our country is one of the wealthiest, yet with
one of the poorest health, dollar for dollar; it's because the public
doesn't know enough to empower themselves, and the propaganda that is
being
spoon-fed to the public sounds good enough, but is often not supported
by
true fact. Lyme is one of those health issues that is glossed over, and
it's
time for the shroud to be lifted.

If you would like to use an article or information from an article,
all I ask is that you do so by contacting myself, so that I can forward
to
particular organizations, the places they can find the article and
where the
message is getting out.

Additionally, if you are an individual and not a news outlet, please
feel free to take the series or my contact information to your local
newspaper.

The only way to help the physical, emotional and financial drain on
this disease is to start attacking it, but with knowledge and outreach,
not
bitterness and fear.

Michele Paiva a media/publicity professional. In the past, she worked
as a Headline News Newsmakers broadcast journalist, telesales
spokesperson,
television talk host and print journalist. She is currently pursing her
J.D.
and is a law intern at Security On Campus, Inc., a national advocacy
and
public policy organization. Ms. Paiva is a member of the American Bar
Association and the American Trial Lawyers Association. She can be
reached
at [email protected]

Thanks, Michele.

Michelle,

I think MP might just have another view of Lyme disease and us poor paranoid victims once she finds that she actually has it herself. And I do mean if, not when.

In particular I found this part upsetting-

"so paranoid, perhaps because of their
disease or in part, because of the way they have been treated or the
way
they've seen other victims of this disease treated, that they've, with
only
basis of limited knowledge and assumptions, readily cocoon themselves
in
some psuedo protection of alienation."

Limited knowledge???

Pseudo protection of alienation?????

So we're paranoid, limited in our knowledge and alienated?

I was also disappointed in the almost total lack of hard facts.

Here's another part I found distasteful-

"It has been a disheartening awakening to see some victims of a
disease, which is literally eating away at them, to be so bitter and
negative"

"Literally eating away at them"???????????
Lyme is not gangrene or that strain of
Strep that eats flesh.

"Bitter and negative"
There were many here who continued to offer help to Michele which she ignored and failed to mention in her article.

janet

I read this 2nd article, and she seems to have a bit of anger sluicing in the background tone of this current, today's, article. She mentions making it "fun" when she takes ticks off of her kids.

I think this person has more going on with lyme disease worries than she let on before, when she came to this board asking about abx regimes for her "friend".

This 2nd article (7/11) also has a bit of dirty slang slant to it comparing bb or "bo-bu" (her abbreviation for the bacterial name for Lyme)to whores and such. And cheap crack.

Kinda funny, but strange. Wonder how article #3 will turn out?

this article is only her first so she will likely give "facts" in the ones to come.

she was not who she was accused of being, so everyone needs to get over it. let her try to help. it's not easy to admit it when we make mistakes, she deserves at least a little credit.

quote:

---

Originally posted by Jellybelly:
she was here to help and learn. she tried to make sense of how she was received her and she did a pretty good job in my estimation. some tried to help but far to many treated her with disdain.

this article is only her first so she will likely give "facts" in the ones to come.

she was not who she was accused of being, so everyone needs to get over it. let her try to help. it's not easy to admit it when we make mistakes, she deserves at least a little credit.

---

I took offense with the tone and rude responses that Michele came up with when shen encountered feedback from some long time people here on this board who were asking her to remove the name of the LLMD she put in one of her very first posts to this board.

That put me on alert, but I never posted, just read all her posts and came to my own conclusions about what she was up to. And I have to say now, in my very last conclusions of what she was "up to" here on Lymenet, that my obvservations of why she was here, are correct.

She sprinkles her articles with some truths, but her underlying tone is one of disdain, and condescendance. And I can grasp from reading not only article #1 from yesterday, but article #2 from today, that she gathered her information from this website. she doesn't mention it by name, but it's pretty clear in her first article who she's referencing.

So, I feel used, like a cheap whore. But I don't do crack, and have never done IV abx, so maybe that'll keep me safe from her nose in the air tone in her next article?

She's fairly subtle, but her articles do wind around abit, and if you don't have Lyme, or are not familiar with the terminology of this disease, her articles do not make sense.

I think she's got Lyme herself, and is trying to give people an idea of what she's experiencing, if not for herself, then for her kids, who she says in article #2 that she's pulled ticks off of to send in for testing?

Of course, what I think makes no matter here in my opinion of her articles.

And Jelly, in closing, how do you know she was not who she was accused of being? In my opinion, yet again, she was exactly who I thought she was-a troll. She was "trolling" for information from those of us who were straight forward in admitting we have Lyme disease. She threw some bones out there, and then when she crossed some lines, and was asked nicely to change some things in her posts, she got nasty and attacked.

Rude, bad behavior. Defensive, yes, but rude as well. She came here and tried to solicit sympathy, and then when she got her fingers slapped, she came out like a pit bull on crack. Sheesh, I love that term, on crack. She must like it too, since she's linked it to Lyme in her 2nd article.

I don't post very often but I just couldn't let this day pass without saying ...

Thank You !

I look forward to your next article.

The material which became the central theme of her article came from the responses she got here. If people had not "fed" her, she would not have come to the conclusions to which some people seem to be taking offense.

I didn't see all of her posts and it would appear that she did not behave appropriately in some situations, but, given the way she was treated here, I think her characterization of some people here was pretty generous.