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

[Guest guest]

Well said. I too wear the skeptics hat.

I am so pleased that you have found a good new Neuro

Doc and hope you will have the same good fortune with

the pain specialist. Good work on your part. Too bad

we have to advocate so hard for our own treatment.

Marie.

--- Schaafsma <compucruz@...> wrote:

>

> 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:

>

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__________________________________________________

[Guest guest]

So how can I get you to a hyperbaric chamber, portable will be fine?

You are ignoring something that will help you a lot. It'll reduce the

pain, make the kidneys function better, probably stabilize the system

so the blood pressure is not so high etc.

[Guest guest]

No Jill, not ignoring, just not finding and accessing it yet. There is

a hyperbaric chamber in Chico. If I could only get well enough to

survive the drive there, I have family and could conceivably stay for

some treatments. So you see, it is not a new thought, but I am always

glad to be reminded. Thoughts have a way of getting lost here at Chez

Scha.

I have been reading about how this might be helpful, and thinking I

might prove to be one of the lucky ones who retains benefits. Hypoxia

is a very strong possibility for many of my physical symptoms as well

as a possible key player in cognitive lapses.

So thank you. I don't know anything about portables. I don't know how

to find out if there is such a thing here.

>

> So how can I get you to a hyperbaric chamber, portable will be fine?

> You are ignoring something that will help you a lot. It'll reduce

the

> pain, make the kidneys function better, probably stabilize the

system

> so the blood pressure is not so high etc.

[Guest guest]

Hi , I'm not talking about a clinic chamber (Mitch Hoggard/Chico)

as though they will tell you diferently, I know from my own

experience that most people don't need those depths (2.5 ata), the

herx can be horrible at that depth, and it is so exorbitant that you

can't do it longterm and thus will inevitably relapse.

I did it twice at those depths. I believe there is oxygen

toxicityassociated with it--2000% more 02 in the body. They won't

even talk about effects on the eyes and that is very annoying (lens

is vulnerable).

I'm talking about a portable chamber which is easy to load into, much

cheaper ($50/60 session) and so I suggest you go to:

www.oxyhealth.com

Get the phone # and on Monday call and ask for Tom, say Jill the

lymie made you do it . Tell him what horrible shapeyou are in and

that you need to find a doc or professional in or close to Santa Cruz

who will treat you. You are not talking about buying one, just seeing

if sessions help. If that doesn't work let me know.

The portables go to 1.3 ata, that is just fine. You can start slow

(the first tme, you might want to go to 1.1 o 1.2 ata and only30

minutes) and see how your body reacts, and build up over time.

Pressure alone has beneficial effects as Cheney noted (dead sea,

below altitude).

I will bug you until you do it

I'm at a conference this weekend and have heard about more healing

modalities than I can keep track of and some very unusual. Last night

I heard one guy say to another, " And lyme... " and I joined the

conversation onlyto end up talking with them for 2 hours, the first

one being a medical doctor, very innovative, and he and his wife have

lyme.

I spent a private hour with qi gong master Effie Chow...I think

anybody can do it and I hope I do it when I get home and have only

moi to inspire me, not a qi gong master.

I just laid down for a napI was so tired...and am going out to

dinner. I will follow up on some of this stuff and let you know.