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]

� 2004 Global Politician

Yahoo! Groups Links

<*> To visit your group on the web, go to:
http://groups.yahoo.com/group/Robynns_Lyme_List/

<*> To unsubscribe from this group, send an email to:
[email protected]

<*> Your use of Yahoo! Groups is subject to:
http://docs.yahoo.com/info/terms/

there are some cheap shot's at some people here,that she had contact with.

she is also making herself out to be a savior.

she should just help bring lyme to the forfront of the media.

janet,do you think you could post the rest of her column's?

i would like to follow them.

sorta feel like the horse and carrot thing. ,gary

I think she's being pretty generous and understanding.

quote:

---

Originally posted by GEDEN13:
read's like, she is patting you on the back with one hand,and slapping you across the face with the other.

there are some cheap shot's at some people here,that she had contact with.

she is also making herself out to be a savior.

she should just help bring lyme to the forfront of the media.

janet,do you think you could post the rest of her column's?

i would like to follow them.

sorta feel like the horse and carrot thing. ,gary

---

quote:

---

Originally posted by GEDEN13:
read's like, she is patting you on the back with one hand,and slapping you across the face with the other.

there are some cheap shot's at some people here,that she had contact with.

she is also making herself out to be a savior.

she should just help bring lyme to the forfront of the media.

janet,do you think you could post the rest of her column's?

i would like to follow them.

sorta feel like the horse and carrot thing. ,gary

---

I agree 100% !!! I thought I was the only one who read this article this way, at least no one on the medical board posted with this impression.

But, I believe that this is a very veiled passive aggressive type article. If that makes sense at all. I think the ones who followed MP's posts completely (not just hit and miss, as some of her supporters seemed to do) here on Lymenet, you'll see thru the bullsh*t pretty quickly.

And, if you had NOT read any of her posts, then this article that was posted here today would NOT make any sense either-I read her article a couple of times, and when I read it as though I had NOT read any of her posts on lymenet, the other veiled insinuations (and I will not quote here) made no sense to me in this article at all.

Looks like more damage to the folks here with legit lyme problems, all from a woman who proports to "care". What a crock. I'm sure the next installments of her series will be as muddy and unenlightening as this one was.

Time to buckle up people!
Julie

get's alot of her false information from sci med.

, gary

The term paranoia is inappropriately used to describe people with lyme. Do some more research about the immune system and it's trigger center--your gut.

We have heightened sensitivities in all bodily aspects and this leaves us with the basic flight or fight instinct.

The fatigue that can be brought on by the illness, leaves us with only enough energy to allot to things that we NEED to do.

I would like to do a documentary with you. I would like to go right into doc's office and film people getting iv's and waiting in offices eating meals out of cool packs. I'd like to see people turning down things that I formally enjoyed doing, but have to allot the few minutes I feel good just to make sure I can give my child a bath.

I would like to show people popping their medication at intervals, involuntary vomiting, seizures, muscle spasms, herx pains, restless sleep. People (like me) crawling upstairs at 9pm, holding onto handrails because all neuro messages are feeding your body "I am 100 yrs old today".

I don't wish it on anyone, but if I could give you 30 minutes of the mental and physical burden, you would see that you would start living every minute you have to the fullest. You would start to care about things in a way you never did before. You would startle when someone was questioning you about using this as a scapegoat.

I'd like you to come to my door and ask me that question. You'll see a smart, caring, fun-loving 42 yr old mother and wife that dragged her *** to work for health insurance. You see, my husband was diagnosed with it a few years ago... he got early treatment because of the bullseye. He also doubted the illness and its effects, until he read more and related what was happening to other was happening to me.

I didn't have the energy to fight with him. I did not have the strength to fight with him. And why should I? So if I am not going to fight with a person I've known for over 15 yrs, why am I going to take my precious energy to debate with you my illness?

I have a life and I will get as much of it back as I can with antibiotic treatment and a supportive llmd.

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 differ with her on that.

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. She failed to mention those offers in her article.

There is much else with which I disagree. However, some people just can't see the truth when it's in their face.

I was very disappointed by the total lack of hard facts, just lots of innuendos.

janet

She dabbles in color. She's afraid to be true to her own harshness and abrasiveness. Think she's got the I want everyone to like me prob, so when they turn around she can smack them down if it happens to suit her needs.

Today's article from Michele is called "Empower Yourself", and you can find it when you click on the link above, or the link in this first post. (if the one above doesn't work right).

It's dated 7/11/05 and has some more info in it that is slightly amusing, if not entirely out to lunch in some points.

Both articles don't read straight forward to me. Especially the first one, but the 2nd one (todays)also has a disjointed haphazard tone to it. Maybe MP is struggling with neuro Lyme symptoms herself? Hard to say, since she blew thru this board like a stiff breeze blowing downwind from a sewage plant.

Today's menu served up some potty humor in that she referred to BB as a whore on cheap crack. Or something like that. Maybe she's doing a spin off on all those Lyme sufferers who do IV abx and need to get their fix?

I think that is pretty much typical of the author's style. Learns the bare basics about a topic then writes like she's some kind of expert - or taking it one step further - an 'activist'.

Could add some peanut butter to the fluff and ya got yourself a real gooey sandwich.

cootiegirl

[This message has been edited by cootiegirl (edited 11 July 2005).]

quote:

---

Originally posted by janet thomas, about the article:
-

", with
only
basis of limited knowledge and assumptions, readily cocoon themselves
in
some psuedo protection of alienation."

---

This doesn't even make sense.

Initially, I too, was critical, but then had second doubts.

By "nature",the law profession IS adverserial, and some subspecialties of journalism are, as well.

So, metaphorically, she "burn't her hand on the stove" of our suspicions with respect to soliciting personal information,identity,etc.
and then having it used to against us with inquisitional zeal.

Words just don't cut it in terms of the deep felt betrayal by medical and other healthcare low-lifes, cocaroaches, and mercenary dirt bags who actually went out of their way to harm patently very sick adults and children.

Our trust in those in healthcare has been deeply betrayed by many in the field, too many of us, unspeakably so, by conduct that is reprehensible in the extreme, gratuitiously dispensed mental and physical sadism, intransigence,depraved indifference, and hostility, no matter how comprehensive, and exhaustively detailed, unequivocal our clinical presentation,laboratory evidence, and medical imaging may diagnostically demonstrate.

There is amply implicit promise of more of the same, and worse of such betrayal, and "they" continue to demonstrate it with impunity.

I believe, for the moment anyway, and can swayed otherwise with good evidence of it, that Michelle has gotten more than one pulse and needs time to mull over theses impressions.

Some of our mistrust of Michelle's intentions may have been initially justified, but allow her to prove otherwise.

Please give her a chance.

Respectfully,
pq

[This message has been edited by pq (edited 11 July 2005).]

[This message has been edited by pq (edited 11 July 2005).]

All in all, however, I think she's mostly on our side and is attempting to help us out.

I bet if she had been received differently this article may have been a whole lot different. I bet she would have even shown us her first draft for comments. She was looking for input if you all remember.

I did notice over at scimed that she was roundly put in her place over there as well for coming across like she knew more than she really did. Basically someone over there told her to read up on lyme disease before she speaks up on it....

Don't really think she was a troll either, just annoying, overzealous and extremely proud of her credentials.

all of us, including the author of this piece, should be humbled, if anything, by our experiences regarding this.

She actually sent me 7 or 8 e-mails chatising me for saying (on here) that she wasn't a "real" journalist (and then blocked my e-mail address from responding).

Having said that, I think it is worthwhile to reflect on how "outsiders" view Lymenet. I think it is a fairly typical response to visiting this site. It seems that that many people on here routinely come off as bitter, paranoid, and clearly very defensive.

Steve In Minnesota (getting MUCH better)

quote:

---

Originally posted by cootiegirl:
Same article she had 'pubished' at rushpr the end of June. You know - this woman is a legend in her own mind - writing a few little articles for an online site does not make you a 'journalist'. Her articles are 'fluff'.

I think that is pretty much typical of the author's style. Learns the bare basics about a topic then writes like she's some kind of expert - or taking it one step further - an 'activist'.

cootiegirl

---