Irene: (was Re: posts)

[Guest guest]

Irene,

You obviously have a serious issue with me, emailing me

privately several times as well as taking a potshot at me personally

here, all

because you seem to have misinterpreted a post I made several weeks

ago, misconstruing it as personally attacking you and others having

problems. Personally I don’t give a flying fug what you

think but I don’t like to see you trying to poison others.

You seem to have a paranoia complex given your direct email to

me which questioned why I felt the need to start my reply in a

particular

manner to your criticism of people who apparently made Annie913 feel

like she

had to unsubscribe. Your post to which I was

responding said “I

just received a letter from Annie913 in which she said that she had to

unsubscribe from the board because some of the letters she received

were CONDESCENDING

AND SIMPLY RUDE AND DISRESPECTFUL”.

In the handful of replies to her email on the group I saw nothing in

which anything like that came through, so the conclusion I was left to

draw was

that people must therefore have written to her privately putting her

down. You asked me (quote) “I wonder why you

say

that you didn't reply to Annie? Did I menion (sic) you personally?

Looks

like you feel a bit uneasy if you rush to justify yourself for no

reason. I

wonder why?”.

What planet are you on???? Given you seemed to be implying that people

had sent her nasty

emails privately (either that or she has interpreted well meaning

replies from

people like Garnet and as condescending, rude and disrespectful,

in

which case she’s the one with the problem) it seemed to me only prudent

to

clarify that I had not emailed her at all.

If I had indeed emailed her and contributed to her feeling

the need to unsubscribe, then my reply would otherwise have been

blatant self-justification for

poor behaviour. The fact that you even

felt the need to try to try to hassle me again by emailing me privately

to ask such

a question when I’m sure it’s obvious to everyone else doesn’t say a

lot for

your mental condition.

I'll leave that for others to form their own opinions on.

It seems you took my “sacrifice” comment a few weeks ago way

too personally. Maybe if I elaborate on

where I was coming from you will understand better. For the first five

years I was

on this forum pretty much the only side effects mentioned were related

to stiffness and sleeping,

which in most people soon abated, or nausea/stomach issues which

resolved themselves

when they changed fillers.

I run a similar group to this one for people with ALS (Lou

Gehrig’s disease), probably one of the cruellest diseases imaginable in

which

people typically die within 3 to 5 yrs (some only a few months), fully

cognisant but trapped helplessly inside their own bodies, suffocating

as their breathing fails. Since learning

about LDN I have convinced quite a few of them to start on it as well,

almost

all with very good results, slowing down progression and/or clearing up

problems like choking on mucus etc..

Similarly on another group for people with the disease closely

related

to ALS that I have. I’ve spread the word

in both places and elsewhere, often copping flak for so doing, but

ignoring that

because I believe in LDN and feel it’s very important to get the word

out. Again, many very grateful people with

success

stories on LDN there too.

Early this year on here we received the warning several times

that big pharma are beginning to be concerned about the ever increasing

groundswell of support LDN is receiving and may be about to respond by

spreading disinformation and creating confusion on LDN boards. Lo and behold, what happens? Out

of nowhere we suddenly have people

appearing on here talking about bad side effects on minuscule doses and

confusing newbies by presenting conflicting information.

Are you in reality a representative of big pharma,

only here to confuse and divide?

Contrary to your thinking, I have absolutely no problem at

all with taking in new information IF I believe it is true and not

deliberately

trying to confuse people and have them questioning whether to even

begin LDN! It seems more than coincidental that

this

confusion and sudden upsurge in people reporting new side effects, even

at minuscule

doses, pretty much began after we were warned it would!

Back to my comment about sacrifices which seems to be a main

sticking point with you. All I meant is

that even allowing for the fact that some of these stories may be

genuine, we don’t

want them to become the focus of the board and scare people off even

trying LDN. That’s already happened several

times on

here, including one case which sticks in my mind because it concerned

someone

with ALS. The thought that even someone

with such a horrific disease as ALS is potentially frightened off LDN

with its potential

to improve facets of and prolong their life greatly concerns me and it

is that

my “sacrifice” comment was about. (Please

note that at the time I suggested that “sacrifice” was too strong a

word but I was

tired and couldn't think of another.)

My concern was that all the negative stories, some/all

possibly coming from big pharma ‘plants’ on here, were overpowering the

board

and scaring people away from LDN. A win

for big pharma! We need to make sure

that there is always a balance and that some people won't benefit from

LDN,

others may even have some side effects, BUT we know from our years on

here that’s only a small

minority.

The long termers on here know the value of LDN which is why

they’re still here answering the same old questions over and over and

constantly

trying to get the word out. We have seen

over 3, 4, 5 or longer years how many people can be helped enormously

by LDN. We can't allow the naysayers and the

minority

for whom it hasn’t worked to have a disproportionately loud voice and

scare off

those who could benefit. As I said, my

choice of “sacrifice” was not the best, but the above is what I meant. If that means I’m still in your bad books

Irene (and others of similar ilk), then such is life! I’ll

have to go and cry myself to sleep at

night. NOT!!

Spreading the word as much as possible is what is

critical. We of course want to help

those for whom it doesn’t seem to be working or is causing problems, as

we have

unselfishly been trying to do for years, but have to accept that

nothing works for

everyone!

Irene wrote:

Five minutes ago somebody with depression on LDN contacted

me privately. Looks like people are afraid to post on this forum if

they have depression or other negative effects while on LDN. People do

experience depression on LDN, however few and however minute (sometimes

not) it is. Just get over it and stop preventing others form posting

their experiences. It won't help anyone.

This site was set by MS sufferers but as the time goes,

many people with the whole host of autoimmune illnesses have joined

this forum and, inevitably, new side effects, new optimal doses and the

whole lot of new and interesting information comes in. If depression or

doses smaller than 3 mg is something new for you, C, it means that

there's something new for you to learn. Isn't it a good news?! We all

like learning and no, we don't feel our authority challenged by new

information we don't know. We don't try and play it down as "a very

small minority of cases" but welcome it and learn from it. We all still

have an awful lot to learn.

Shall I expect another "New breed taking over" message?