Re: What is wrong with Penny?

[Guest guest]

Penny,

Would you PLEASE try to be less patronizing and self-righteous?

You are either missing my point or evading it. You are running a

group that has contempt and abuse towards other patients. You not

only allow it, but you encourage it and do it yourself and spread it

around the Internet. Can't you understand that calling everybody on

the MP cult members is character assassination? How many times have

you done it? Does it make you feel good? I changed the subject line

on this thread. Try reading the whole thread. If you can't

understand what is wrong in it, then I guess I'm wasting more of my

time. I am not a cult member. I think for myself. My name is not

Trevor Marshall, so don't bitch at me like I am. I talked to Trevor

right after the lawsuit, and I have read your countless posts about

it. All anybody ever reads is what you write about your side of it,

and there are always two sides to an argument.

I am aware that Barb contributed to the science behind the MP, and of

course I appreciate it. However, that does not make the post I am

obviously referring to OK.

There are five antibiotics used on the MP, and you definitely do not

understand how they work.

I have never seen any nonprofessional writer with more natural

talent than you, and you can take that as a sincere compliment. The

problem is that when you have your facts wrong people that don't have

those facts believe what you write.

Member counts on are not accurate. I am on a couple of

groups that list hundreds of members that have been closed and

inactive for years, and another that has almost no activity. Maybe

you have a way that I am not aware of but seems to me that the number

of people posting is the only indication of the active membership.

Why you think there are so few people posting on this group? It's

not like nobody knows about it. Could it be the atmosphere here?

This group had nothing to do with a different word than herx being

used on the MP site. I think it is odd that since it's gotten so

much criticism on this site that you didn't ask what the new word

is. Personally I don't care what word is used. It is difficult to

go through, and you and some others make it worse with your

behavior. You say you want information independent of what you think

is a heavily censored MP web site, yet MP patients get abused and

harassed so much that most give up trying to communicate with others

on any web site patient forum. The recent threads on LymeNet are a

good example of the deliberate actions to try to achieve that.

There are some fundamental things that you don't understand about the

experience of the MP treatment. It was a major part of the problems

early on, and you are years behind in your understanding. I may try

writing about it sometime, but going through it is a huge help in

that understanding and I may not be able to do a very good job of

explaining things.

Roy

> >

> > I didn't cut her any slack after the last 2 posts.

> >

> > She's un-informed - and parroting dogma from her guru.

> >

> > I didn't quite say it like that- but she's a follower.. using the

> > words " we " and " the patients " ...and TOTALLY mis-informed about

the

> > true meaning of herx.

> >

> > I think that protocol is responsible for the bastardizing of the

> > meaning of that reaction... that's probably why I just can't let

> > their posts go by too long.

> >

> > To quote Rumsfield.. " There are some things that you just don't

> know

> > that you don't know. " . That's where she's at.

> >

> > It's tiring.

> > Barb

>

[Guest guest]

Penny, it was *very* good you and Barb both posted on lymenet. You

probably saved someone some bad side effects, Penny. So don't feel

defensive. Thank you & the thread turned out really well in the end,

with various lurkers chiming in about their failures on the protocol,

as well as the few successes posting. It gives a well rounded view.

>

> Roy, I don't know what you think we're doing here, but we're not not

trying to drum up members. We're very happy with the bright minds we

already have. We've even figured some very interesting things out, if

you've been paying attention. This is a place where we can talk

frankly about what we want to talk about, mainly infection and

inflammation, not exactly the hot topic elsewhere. People are free to

join in on the discussions here or not without fear of censorship.

We're not a touchy-feely site. There are plenty of those around, all

of which have their own share of drama. We're not interested in

anything but figuring out how to get everyone well.

>

> I talk about a certain subject occasionally when it's being

fiercely defended, because someone needs to tell the other side, and

I'm the likely candidate considering what I was put through. Other

than a tiny few of us, almost everyone else has been intimidated into

silence. I saw and experienced things first hand and no one can claim

I didn't. And when I discuss the subject, I'm doing it on my own turf,

not coming to yours. By the way, I've been asked to write my story

for much bigger outlets by much bigger PWC organizations. No matter

how some might want to spin it, apparently a sick patient being sued

by a " health provider " is an interesting story and considered very

uncool. So far I've declined those groups because I haven't had the

desire to deal with the certain blow back I'd be barraged with from

certain quarters, but the more misinformation is put out there and

rationalized about unproven treatments and the more questionable

behavior towards sick people continues,

> the more I'm seriously tempted to speak out to a larger audience.

In the meantime, the very least I can do is make sure people don't

forget what happened in the past so people can make reasoned decisions

regarding their future health.

>

> What does boggle the mind is why people who don't want to be

challenged are going onto pwc sites claiming a cure? Anyone with any

sense is going to know that such a claim is going to be vigorously

challenged. Now if the challenges had a history of being responded to

reasonably, there could be some good discussion and potential for

progress, but that's never what happens, is it?

>

> Here's something for you to chew on. Back when I was around,

anyone (patient or doctor alike) who suggested that more than 3 abx

were possibly okay was derided and given the boot for 'not following

the protocol'. Now you're saying 5 abx are cool? Same thing happened

with other aspects of the program. You don't see a problem with this?

I didn't catch it in the beginning but it didn't take long. I was so

excited about this revolutionary treatment that I started a discussion

forum (with , who originally told me about it) to raise awareness

of its potential. Biggest mistake I ever made because within no time,

I was being told to ban members who discussed ANYTHING other than the

party line. In the beginning I really urged people to give it the

benefit of the doubt especially as there were a few seemingly

malicious people who just wanted to attack regardless of any validity

the protocol may have had. But as time went by, it became clear that

the purpose of my list was to

> be a propaganda machine, not an honest discussion list open to

debate. When I refused to comply I was banished even though I was

still being treated and experiencing serious side effects from one of

the drugs. A necessary casualty of " war " , I guess. So to remedy the

problem, I opened another list with a completely new and unrelated

name, the first 'Infection & Inflammation'. But that couldn't be left

alone either. was eventually subpoenaed and the new list shut

down. Just like that. Fortunately, I won the bigger battle and opened

yet another I & I list, but if you can't see problems with all of that,

then I'm afraid you have lost all objectivity in this matter.

>

> The thing that's truly ironic about this is that I still tried to

take a middle ground approach, even after things went south. I still

urged people to not take such extreme positions against it. To

consider the potential and not throw the baby out with the bathwater.

But despite my efforts to be reasonable, I was considered the biggestt

threat, not because of my opinions, which certainly weren't as extreme

as others', but because of the LIST and its 750+ members. That's what

was considered the BIG threat and that's why it got shut down and why

I ended up in court. It was posts from various members on the list

that were attempted to be introduced as evidence in court. Without the

pending lawsuit, would never have gone along with the petition

to close the list. Fortunately, there are other big groups, like Lyme

net, which are private and can't be shut down the way a list

can. So I'm all for people speaking out on those lists that have some

protection from that

> kind of intimidation. And I relish people being able to speak in

any way they want on THIS list, after having my own freedom of speech

attacked. Fortunately, from what I understand, it won't be long before

the Supreme Court is deciding whether freedom of speech can be so

easily subjugated by big internet providers like .

>

> The good news now for anyone who does want to speak up about their

story but has been intimidated with legal threats, they no longer have

to be so afraid. There's a very competent attorney in the plaintiff's

home town. Anyone can contact me for this attorney's name. Even if

you're as sick as I was at the time, you can be represented and don't

need to be present. He knows how to handle this kind of legal

manipulation. First off, having already lost a similar suit, and with

a history of similar suits filed by the plaintiff in the past, it's

unlikely a judge would be sympathetic to yet another suit. But IF a

suit is filed and this attorney is called upon again, he's prepared to

go to the next level with a specific kind of countersuit in which the

financial burden will no longer be on the defendant/s, but on the

plaintiff.

>

> penny

>

> p.s. Also, Roy. If you're concerned about name calling, you

should be more carefull with your accusations. I don't recall calling

anyone a " cult member " lately, although the topic on the definition of

" cult member " has come up more than once. If I ever did characterize

someone that way, it was a long time ago and in private which makes me

think you've been listening to tales and not getting all the facts

straight. On these lists I've tried to take the middle road EXCEPT

when the view being presented is so one-sided that the other side has

to be presented for balance. Yes, I do share my own story and don't

withhold my opinions. But I don't attack sick people just because they

don't agree with me. My intention is to help sick people and protect

them from harm. Why there's so often such a personal and over reaction

to criticism regarding this protocol is beyond me. For some reason,

most legitimate protocols and researchers seem to be able to handle

criticism. They just roll

> with it and carry on. They don't respond with censorship and

lawsuits. So why continue to put something out there in the public eye

if you don't want it to be scrutinized? Does the need for attention

outweigh the natural repercussions?

>