Questions for Penny

[Guest guest]

Penny, I am confused. I know, nothing new there. But I am confused

specifically about some of your recent comments here. Often I think

I hear someone saying something and they are not. So I am going to

list the things I thought I heard you say, and just ask you to

comment (probably letting me know that I am hearing things again).

1) I do not agree that all chronic inflammatory diseases should

necessarily be susceptible to a single treatment. You seem to me to

be saying that in the post addressed to Jill which says it shouldn't

matter what your dx is.

2) Within a single diagnosis, I do not agree that all patients

should be expected to respond to the same treatment in the same way.

You seem to be ready to dismiss HBOT because there are patients it

hasn't worked for, but Penny, your response to Benicar is

phenomenally RARE.

3) I do not agree that the MP has 'worked well' for you, because

every time you try to stop taking Benicar your symptoms soon return

and are debilitating. I fear this is true for many who pronounce

themselves 'cured', something you have had the good sense not to do.

If the MP were billed as a program of palliative care, rather than a

rotorooter for deep infection, it would be working well in your case.

4) I not agree that revisiting a particular type of treatment means

we are moving in a vicious circle. Of course we revisit! These are

complicated illnesses! If we are making the same erroneous claims of

universally reproducible benefit THEN we are moving in a vicious

circle. I don't think Jill did that with HBOT, she just expressed a

strong belief that it would help me.

5) I do not agree that this list should be dedicated exclusively to

the pursuit of a 'holy grail' treatment that is universally valid

and reproducibly effective for all chronic inflammatory conditions.

If we pursue only that, I believe we will be guilty of what you seem

to be accusing the list of now, a stubborn addiction to pie-in-the-

sky.

I obviously do agree, and have said I agree, about not exaggerating

the success of what I call 'partial cures', that relieve some

symptoms but not others, or all symptoms but only in a subset of

patients, or all symptoms but only temporarily, etc, etc.

I do think Jill skirted the edge of that with HBOT, but only because

she was talking from the perspective of patients who made real

progress using this treatment, and omitted the perspective of

patients who have used it and gotten nowhere.

No one is any danger of getting my hopes up. A jar of viagra and a

crane couldn't get my hopes up. But I am not hopeless! I just don't

believe in counting chickens that haven't hatched.

Cheers,