Re: Room for everyone's comments

[Guest guest]

While eating lunch today, I overheard a conversation at an adjacent table.

The two diners were a teen-aged young man (about 17) and his mother. They

were discussing some unpleasant and troubling symptoms he's recently been

having: Bell's palsy, swollen lymph nodes and stabbing pains in the head and

neck. Amazingly, their doctor was at a loss to explain what might be

causing all of this. They were discussing the next steps, including various

diagnostics and interventions, but there was no mention of Lyme disease.

The son's face was somewhat lifeless on one side, while the other twitched

repeatedly despite his efforts to stop it with his hands.

As I finished my lunch I looked at them and struggled with my own reticence

for a moment, but I knew I had to speak up. To walk out without informing

them would have been a despicably cowardly act.

Did I enjoy telling them about Lyme? No... it broke my heart to look into

those bright young eyes and think of what he may have ahead of him... what

he almost certainly has growing inside of him. I HATED being the bearer of

such awful news.

I can well imagine that to some onlookers, what I had to say may have seemed

extremely negative, but I had one overriding concern: to do everything in my

power to help him not to become like me.

In living with the crushing metabolic frailty typical of

disseminated/chronic Lyme, knowing what NOT TO DO is tremendously important.

It may not seem as " sexy " as what TO DO, but if there was an easy answer to

that one, none of us would be here.

In the year and a half that I've been subscribed to this list, I have always

found Knotweed's comments to be well-researched and informative. I always

read them with great interest, and I take them seriously because he

approaches things with scientific rigor.

I am grateful for the time and energy Knotweed has invested in helping us to

avoid some of the mines in the minefield of Lyme. I know from painful

experience that trying the wrong intervention can have dreadful (and

sometimes irreversible) consequences.

Thank you Knotweed. I hope you will continue to post here.

Jeff

[Guest guest]

I agree, I think there is plenty of room for everyone's comments. What doesn't

help one person, might help another. I want to thank everyone for their input

and experiences. I value this forum very much.

Connie

RE: [ ] Room for everyone's comments

I am grateful for the time and energy Knotweed has invested in helping us to

avoid some of the mines in the minefield of Lyme. I know from painful

experience that trying the wrong intervention can have dreadful (and

sometimes irreversible) consequences.

Thank you Knotweed. I hope you will continue to post here.

Jeff

[Guest guest]

Knotweed does have a big-time negative bias which is so not helpful to

many.....Negativity is not generally a prescribed cure for any disease.

Jazzman

[ ] Room for everyone's comments

> With all due respect, I have found Knotweeds responses to other group

> members questions to be informative, helpful over the last few years that

> I've been a group member. I've come to look forward to her responses to

> others posts, and note that she only speaks to subjects that she has

> accurate information to share. We are all in the same boat here after all,

> rowing on intuition and a bit of guesswork as we move through our Lyme

> which presents so individually, and in turn we are all allowed our own

> fair

> dose of cynicism, to be expressed at any given moment...no?

> All the best to all of you.

>

> On Tue, Nov 16, 2010 at 11:43 AM, Jeannie <gemstar727@...> wrote:

>

>>

>>

>> What I don't understand is who made Knotweed the commentator. I don't see

>> posts for just posting sake from him. What I see, is that some else's

>> posts

>> are in most cases only commented on by Knotweed.

>>

>> Don't get me wrong I'm continually educated here, but you always feel

>> when

>> you post, what is he gonna say this time?

>>

>> Jeannie

>> ~~~~~~~~~~~~~~~~~~~~~~~~

>>

>> Knotweed is very negative.......He analytically destroys every known Lyme

>> remedy and is doing a disservice to others

>>

>> Jazzman

>>

>>

>>

>

>

>

[Guest guest]

Hi Connie - I agree too. The one thing I find very reassuring is that Knotweed

does have good things to say about Buhner & this is after all a Buhner group.

Sometimes things go in other directions at times & I tend to just scroll past

them as I'm not interested in MMS, CS or rife. However, that's just my own

personal choice & folks are free to choose which items they like to read (or

not). But there's def. room for many different opinions on here...I think

knotweeds posts are very informative & I appreciate his scientific mind!

>

>

> I agree, I think there is plenty of room for everyone's comments. What doesn't

help one person, might help another. I want to thank everyone for their input

and experiences. I value this forum very much.

>

> Connie

>

>

>

> RE: [ ] Room for everyone's comments

>

>

>

>

> I am grateful for the time and energy Knotweed has invested in helping us to

> avoid some of the mines in the minefield of Lyme. I know from painful

> experience that trying the wrong intervention can have dreadful (and

> sometimes irreversible) consequences.

>

> Thank you Knotweed. I hope you will continue to post here.

>

> Jeff

>

[Guest guest]

>

> Thank you Knotweed. I hope you will continue to post here.

thanks for the kind comment

[Guest guest]

>

> Knotweed does have a big-time negative bias which is so not helpful to

> many.....Negativity is not generally a prescribed cure for any disease.

and I happen to think that hyping all kinds of nonsense treatments is not very

helpful for someone who is really ill.

[Guest guest]

Knot-weed has a unique perspective as he (or she) is a scientist (bio-chemist, I

think). I've always appreciated Knotweed's comments.

I don't think personal attacks on any contributor/member are appropriate.

We are all dealing with a controversial, poorly understood, complex illness.

Please everyone, let's be civil and treat each other with respect.

Kim

western Mass.

Re: [ ] OT: Room for everyone's comments

>

> I'm not sure how being negative to every single new idea being raised is

> helpful. Please advise. How will that help anybody get well or be creative

> in their care?

> Jazzman

>

>

[Guest guest]

Who's to judge though what is nonsense and what is effective?

I know one thing I did for my wife was every regimen she wanted to try I

would first try on myself. This was to see what effect it would have on

someone who wasn't sick. Then she would try it and see what results she got.

I was a big skeptic in alternative medicines at the start of our journey for

her healing. I am no longer.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> [ ] Re: Room for everyone's comments

>

>

>

>

> >

> > Knotweed does have a big-time negative bias which is so not

> helpful to

> > many.....Negativity is not generally a prescribed cure for

> any disease.

>

> and I happen to think that hyping all kinds of nonsense

> treatments is not very helpful for someone who is really ill.

>

>

>

[Guest guest]

knot weed,

 i am sorry i started off this set of rantings about whether your posts are

productive or not. for the record. i believe everyone has the right to have an

opinion and share it. we can't all agree on anything. i will post when i feel

strongly about something and i sure don't mind your posting what you feel

strongly about.  i take what is helpful and ignore the rest. i hope others can

do likewise. we are all here to try and get well.

~dory