1st reply to Pippit

[Guest guest]

Pippit wrote:

" Although the Japanese study Ken cited stated Benicar reduced

Aldosterone levels at one year, some patients just ran with that

and failed to take note that the authors didn't ever say they felt it

lowered levels too much to be safe. What they heard instead was

alarm bells going off and at that point considered this

information " evidence " that the drug was dangerous to PWCs. "

Pippet, your reasoning strikes me as bizarre.

In the first place, the Japanese study established something which

MP moderators flatly denied - that Benicar lowered Aldosterone

levels.

Now for what population would this be a problem? It would be a

problem for people whose blood volume is already abnormally low, for

one. That includes a disproportionate number of CFS patients.

How does a problem with low blood volume typically manifest? LOW

blood pressure. Who were the subjects of the Japanese study?

Patients with HIGH blood pressure.

Would a drop in blood volume in patients with HIGH blood pressure be

likely to trigger concern? No, it would not. In fact, the use of

diuretics to reduce blood volume has been the first-line treatment

of HIGH blood pressure for a long time.

Does that mean that a Benicar-induced drop in aldosterone is just

fine if you have LOW blood volume and LOW blood pressure? No, it

does not.

Did the patients who reported here on their negative experiences,

expressing particular concern about suppression of the RAS and drops

in aldosterone, claim that because of their experience, no one

should take Benicar, or the MP should be put out of business?

No, they did not. They wrote asking simply that there be a

disclaimer or warning of some kind on the mp.com site, that high

doses of Benicar could involve risks to specific subsets of patients.

Such disclaimers are one of the signs of ethical and scientific

rigor in the presentation of an experimental treatment to potential

candidates.

As I've recounted, the response on MP.com was instead to deny that

Benicar HAD any effect on aldosterone levels. When first Ken and

then I attempted to post the Japanese study showing the reverse was

true, our posts were immediately deleted.

I can't speak for what was in Ken's post, but mine contained nothing

but a link to the abstract, a description of the study, and a

quotation of the relevant passage describing substantial drops in

aldosterone after one year on Benicar.

Pippet, it might do you some good to read Carol Sieverling's April

05 transcripts of an informal presentation by Cheney about the

finding of ICM - idiopathic cardiomyopathy - in a subset of CFS

patients. There is a measure for the degree of this dysfunction,

called " Q, " which turns out to correspond with uncanny accuracy to

the degree of disability which CFS patients report.

I would recommend reviewing these transcripts for their own sake, to

anyone on this list interested in pathologies associated with CFS.

But they will also perhaps help both Pippet and Penny understand one

set of misgivings about the use of ARBs - their depletion of

aldosterone.

http://virtualhometown.com/dfwcfids/medical/cheney/heart04.part1a.htm

http://virtualhometown.com/dfwcfids/medical/cheney/heart04.part1b.htm

http://virtualhometown.com/dfwcfids/medical/cheney/heart04.part2a.htm

http://virtualhometown.com/dfwcfids/medical/cheney/heart04.part2b.htm

S.

> > > I'm not sure how this study is relevant to PWC in general?

> > >

> > > Regarding the objective of the study: As far as I know, the

> makers

> > > of ARBs have never promoted the drugs for high risk heart

> patients.

> > > They're only supposed to be used to lower bp in people with

> > > moderately high blood pressure. Not people with very high bp

who

> > are

> > > considered at " high risk " for MI or death.

> > >

> > > I'm also curious about the earlier statement that was made

> > regarding

> > > the risks of ARBs. Is there new information? I know a lot of

> claims

> > > have been made without any scientific evidence to support

those

> > > claims. My own experience has been just the opposite of those

> > > claims. i.e. My alderesterone, kidneys and liver all are fine

> > > according to tests. My b vitamins are pretty much where

they've

> > > always been since I started testing. In fact, I'm depleted in

> fewer

> > > of the Bs now, than I've been in the past. I've been on an ARB

> > > (benicar), for over a year with no apparent side effects

(except

> > for

> > > fatigue and dizziness during the first few weeks adjusting to

the

> > > high doses of the drug) and no lessening of symptom relief

over a

> > > year later. As a matter of fact, my kidneys and liver are

looking

> > > better than ever. Sure, it's 'possible' that there's some kind

of

> > > unseen damage being done, but that's purely speculation, since

> > tests

> > > do not bear this out.

> > >

> > > I know that many of us have concerns about the person who

> > introduced

> > > the ARBS as a part of a certain controversial protocol, but

for

> > some

> > > people the benefits of the ARB are quite extraordinary, and

I'd

> > hate

> > > to see these drugs not given a fair and objective chance if

they

> > can

> > > potentially help a lot of people, as they've helped me.

> > >

> > > We take risks with lots of commonly prescribed drugs.

> Antibiotics,

> > > anti-fungals, blood thinners, pain killers, anti-depressants,

> anti-

> > > inflammatories, anti-seizure meds, migraine meds, anti-

malarials,

> > > anti-parsitics, among others. These drugs are known to have

> risks,

> > > and yet we decide that the calculated risks are worth the

results.

> > >

> > > It makes sense to warn people of the known risks of a drug.

For

> > > instance, warnings about the tendon risk of chloroquinolone

> drugs,

> > > like Cipro and Levaquin, is sensible, since this risk is

proven.

> > >

> > > Trying to objectively analyze a protocol, where it holds up

and

> > > where it doesn't makes sense. Speculation on potential risks

> makes

> > > sense too, if there's some indication that the risk may be

real.

> > But

> > > we need to be careful that we don't cause alarm by suggesting

> risk

> > > that is based on nothing more than our own personal beliefs or

> > bias.

> > >

> > > Unfortunately, I do think this has happened to a certain

degree

> > with

> > > ARBs and Benicar. It would be really terrible if some people's

> > > personal distaste for a particular creator of a certain

protocol

> > > prevented further research into a potentially helpful drug.

> > >

> > > penny