Answers, Thanks, and musings on recent I & I discussions (long)

[Guest guest]

Thanks to all who had comments and advice about my current course of

treatment and recent trip to the neurologist. I accept the nomination

for official I & I Aunt Blabby.

Jill asked (politely) if I might be experimenting with ARBS and

testosterone - Kate's answer to that was correct, I was put on both

medications out of perceived clinical necessity.

The PICC installation will proceed only on my LLMD's say-so, and it

will be interesting to see how LLMD reacts to Dr. C's advice about IV

Rocephin sooner rather than later. LLMD has wanted to keep me on IM

Bicillin alone for another couple months, she may change that view

now, or not.

In any case that PICC line is coming soon to a scha near you, and

the advice from Sue B. and Penny is much appreciated.

I am in a bad way as I type this, pain is like a tight net over my

whole body, any little movement can trigger a new wave of suffering.

There has been a lot of ARB talk here lately. I want to join Jill in

saying that I too regard ARBs as experimental and of uncertain value

in treating the types of inflammation involved in our illnesses.

The twice daily Diovan 160mg I take, which is actually more of that

ARB than the Unnameable One found effective against Sarc in his first

ARB experiment, has controlled my blood pressure only partially and

inflammation not at all, that I can see.

I grant that ARBs are associated with relief for some patients, but I

know for a fact that a good many patients got no benefit from 3x the

standard dose of Benicar, just as I have had no apparent benefit from

the maximum dose of Diovan. I would submit that conditions more

specific than " inflammation " must be present in order for ARBs to

provide relief.

Forgive me for being cranky about this, but these endorsements of ARBs

MUST be qualified. " In some cases... " should be the mandatory prefix,

with an additional caveat that the conditions which separate ARB

responders from non-responders have yet to be elaborated.

Grand theories of inflammation that assume responsiveness to ARBs

should be filed in the folder labeled " Interesting, but unlikely to

have any broad validity. "

That will sound like crazy talk to anyone whose symptoms have been

whisked away on an ARB regimen. I understand that. But you really

don't want to tell someone in my condition, who's been ARB'd up the

yin yang for nearly 18 months and is in more pain than ever, 'ARBs

will fix you right up.'

No. No they didn't. No they won't. No, I am not interested in trying

tripling the dose and frying my kidneys. I would-not, could-not, in a

jam. I do not like them, Sam-I-am!

Ahhh...that was good. A little release.

In an earlier post, I referenced Cheney's work in mentioning my

interest in trying an ACE-inhibitor or ARB/ACE combo. I have read

several research articles comparing ARBs and ACE inhibitors in heart

failure. Cheney's notions, and the research that he cites in support

of them, made that research come to mind.

I had edema, blood pooling in my legs, when I first became disabled. I

have the most extreme exercise intolerance of any patient I know,

though I have read about even more severe cases.

I had hoped ARBs would help, they have not. I had hoped MS Contin

would ease the pain and allow me more movement, it has helped but the

pain has overcome it at the present (long inadequate) dose. The

promoters of ARBs tend to forget the studies showing that they make

macrophages stoned, lazy and stupid. You don't have to be a genius to

figure out that this is not ALWAYS going to be a good thing.

Let me make some bold, but in my opinion very accurate statements:

We do NOT know how inflammation differs between patients whose

infections are predominantly intracellular vs. extracellular.

We do NOT know how varying types and degrees of cardiac involvement

affect these illnesses, and impact the usefulness of adjunct

treatments, like ARBs, that help some but not others.

We do NOT know what the connection is, exactly, between Lyme and CFS,

Lyme and Fibromyalgia, Lyme and MS, Lyme and Alzheimers.

We do NOT know how to distinguish with any certainty between " herx "

and cyclical or progressive changes in symptom severity.

Some of us, myself included, are in a situation clinically where there

is absolutely no escaping these unknowns. We understand that others,

who have made one or another 'treatment breakthrough', will feel

enthusiastic about whatever they perceive as triggering it, and share

that with the group.

We hope that others continue to do this, because you never know which

of those things might prove helpful.

The realm of these unknowns is one we all live and move in, whether

our treatment appears to be working well or not. I won't insist that

things that haven't helped me personally are a bunch of hoo-hah, if

you won't insist that they are universally valid.

We have a LOT of space to fill in the understanding of these

illnesses. Anything that appears to fill more gaps than it actually

does stands in the way of our progress. Trimming back assertions to

fit the data is not an expression of pessimism but an attempt to clear

the path for future gains in understanding.

I do not tell someone whose experience excludes certain happy theories

of mine 'you must be depressed,' because they are spoiling MY good

mood.

I find Rich's takes on Cheney's latest notions very enlightening, and

suspect that he is correct about glutathione's key role in the data

Cheney is currently focused on.

Things like IV Glutathione and IV Immunoglobulin, which are expensive

and difficult to come by, may get short shrift from us for that

reason, when they actually have a much broader application than some

of the more available, but only erratical helpful, adjunct treatments.

If I may once against quote the good doctor:

" Now the star-bellied Sneeches had bellies with stars "

" But the plain-bellied Sneeches had none, upon thars. "

Yes. The views of the doctor we call Seuss. Infinitely more

sophisticated than most of the doctors I've seen. I am glad to have

found exceptions in my LLMD and Dr. C.

Don't pop the champagne for me just yet, though. Let's see what the

PET scan and other tests Dr. C ordered turn up. Above all, let me risk

wearing out those figurative fingers of yours, by asking that you

cross them one more time for this coming Monday's appointment with the

pain specialist. If that goes well, and I get some more relief, I

promise to be less cranky.

Agent Scha