remedyfind survey on Unnameable Protocol, thoughts

[Guest guest]

Thanks Laurie. I've come across these guys before. I wish the service

was used more, because I like the format. They don't even have a

category for Lyme disease though.

The comments on the Unnameable Protocol are consistent with reports

I've heard from a significant number of patients. We'll continue to

see more of them as time goes on, because many patients feel 'locked

in' to their committment and won't stop until the idea that all the

misery is productive herxing has exausted every last ounce of its

credibility.

Of course, there are others who feel they've done well, and because my

loyalties are with patients I do not assume they are mistaken or their

accounts are less than accurate. I do however remain quite skeptical

aobut positive results being generated by either the low-dose

antibiotics or the D-deprivation.

One thing about the Unnameable Protocol is that patients are required

to discontinue previous treatments and spend most of the daylight

hours in a state of relative sensory deprivation - no sun, dark

glasses in the house. That a certain percentage of patients would

improve simply by stopping whatever they're doing and radically

lowering the level of sensory input is not a big stretch for me.

I remain very concerned that some of those who fair poorly spend

several months trying to get back to where they started. I know more

than one patient who shares the experience of the remedyfind commenter

who said they had never been so sick in their lives.

In my opinion, the Lymie culture of 'herxing' has helped make people

gullible, less able than they should be to say 'when I do this, it

hurts, so I will not do this.' I am haunted by the idea of people

doing themselves real harm, being told by their bodies that this is

what they're doing, and under the banner of 'herx' persisting in this

self-harm, feeling heroic about it, urging others to follow

their 'courageous' example.

If I said that on Lymenet, someone would blast me for putting down

Lyme patients, which really is not the point. Herxing is real, it is

absolutely true that we sometimes will suffer from what ultimately

helps us to heal, but it should be obvious to anyone that this fact

can be misconstrued in potentially dangerous ways.

When you already feel like you're going to die half the time, and

something you do increases that to ALL the time, in my opinion it's a

measure of sanity that you give immediate consideration to terminating

whatever it is before you terminate yourself. That is not to diminish

the difficulty of making these decisions, of course.

>

> Some interesting comments are over here.

> http://remedyfind.com/rem.asp?id=8774

>

> I haven't run into this before, but checked it out. They have

> surveys

> on many treatments for many illnesses, and you can join

> for free. They do require some information, but you can adjust your

> settings so personal info is not displayed, if that's your

preference.

>

> Laurie

[Guest guest]

:

You wrote in part:

_In my opinion, the Lymie culture of 'herxing' has helped make people

_gullible, less able than they should be to say 'when I do this, it

_hurts, so I will not do this.' I am haunted by the idea of people

_doing themselves real harm, being told by their bodies that this is

_what they're doing, and under the banner of 'herx' persisting in this

_self-harm, feeling heroic about it, urging others to follow

_their 'courageous' example.

Yah-

You know how I feel about the word Herx.

It's the most abused word in chronic inflammation land...

Barb

> >

> > Some interesting comments are over here.

> > http://remedyfind.com/rem.asp?id=8774

> >

> > I haven't run into this before, but checked it out. They have

> > surveys

> > on many treatments for many illnesses, and you can join

> > for free. They do require some information, but you can adjust

your

> > settings so personal info is not displayed, if that's your

> preference.

> >

> > Laurie