Some reactions and question re Posenecker

[Guest guest]

Dear All,

I value the people on this list very much. I know some of you respect

Dr. P and report having been helped by him, which is why I went to his

site and why I wrote to him.

So in my now raising some questions that might sound potentially or

actually critical or concerned I do not wish to cast aspergance (sp????)

on the respect I have for those of you who don't share these. I mostly

wish to learn something from you, get your help, and air what we must

with this complicated illness and all that it invites in the way of

different treatments. So, I beg you, not to treat any of this as grounds

for annoyance or attack. It is not. I wanna get better and want you to

as well.

Here's the story. When I first became ill and there was not a clue about

what " it " was a message person I was seeking relief from mentioned the

Buttram clinic (I was living in Phila and though I couldn't get out of

bed it was a possibility--though a long shot). At the time, this woman,

very open to alternative treatment, who eventually connected me up with

an MD who studied traditional acupuncture from Worsely in England

and who then treated me for 7 months said she had bad feelings about the

cleanliness of Buttram's clinic. Since I couldn't easily get there I

didn't thus pursue it.

However, I suspect in my layman's way that some of my bothersome symptoms

and possibly serious pathology surrounds the malfunctioning of my adrenal

gland. In fact, recently I set in motion the real likelihood of getting

an ACTH stim test (cortrisyn?) and also am and pm cortisols. (I did

quite a while ago take 20 mgs per day in 4 divided doses of Cortef and

while it helped me early on the help was short lived though I took it for

quite a while hoping the help would return.)

But when I visited Dr. P.'s website he says those tests aren't adequate

and recommends his test (I, at the moment, forget it's name but most of

you will know). What the website didn't tell me was why the Acth stim

test was inadequate and why his was better. Nor did it speak of what

treatments would be recommended if the test showed pathology.

So I emailed him and very promptly recived a reply. It encouraged me to

purchase two of his books and to get the test " to see if I had CFS! "

The latter I thought a bit arrogant since CFS is a humbling disease and

the most one should claim is that a test they develop detects a certain

pathology in a highly sensitive way, which pathology, if fixed, can help

with certain problems (which I had described to him). That arrogance is

what I find undermines all clinicians in making good dx and tx, be they

mainstream or alternative, and bugs me more in the alternative world

because it's supposed to be a corrective to the mainstream medical world.

Moving on. He did not answer my question as to what the test tests for

nor did he answer my question as to what array of possible treatments

might be suggested.

Taking tests is always iffy if you wish not to take them, not to put out

the money or discomfort (this involves none of the latter) if you for

some reason won't do the treatment. And if you ask you should be told.

Further, I do not like to be told to buy books on a disease approach by

the author. I have been badly burnt too many times by reading about

exciting cures, feeling they held great promise, taking them, and either

getting no results or getting worse! I would be far more likely to want

to read a book if treatment seemed to be working.

This made me very uncomfortable about shelling out $30 for the test, as I

am broke, though I would if he would have given me the info mainstream

docs in the system that has produced such clinical havoc will often do.

I felt I had walked into a salesman and not a clinician.

I don't have the energy to go back to check anbd this is minor but I

could swear and acknowledge I can't assert that on the website they refer

to him as an MD rather than as a doctor and what kind--an " N.D. "

So if anyone and I know of some of you who have had a good experience

with Dr. P could reply (without accusing me of maligning him, as this was

my experience and evaluation based on lots and lots of open-ness and

experience, I would genuinely appreciate it and would take his test, if

and only if I knew what it was getting at, why the acth stim test made no

sense, and what treatments he offered.

Best,

Judith Wisdom

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