Re: Model for CFS primary factors. / Autism and Chelation

[Guest guest]

Sara, I agree with everything you say except the part about hearing

from people who say we should focus on #1 and leave the rest. I've

heard lots of #2 & #3 advocates over the years and very little from

the #1 gruop. When #1 IS discussed, it's always some exotic,

difficult to diagnose or treat infection (all of which you

mentioned), not the every day strains (none of which you mentioned)

that are actually killing people. Strep, staph, pseudomonas,

actinomyces, etc.

I had to rush my dog to the vet last night. Over the last few weeks

or so, he's become arthritic, then lethargic, until last night he

suddenly had an abscess on the side of his head the size of a golf

ball.

It's like watching a dog's life (1 yr. = 7 human) version of what we

pwc are going through.

So the vet gave him 2 i.v. antibiotics and put him on an oral as

well. Triple therapy. No mention of any kinds of nutrients useful

for healing.

And all the nutritional support I was giving him prior to last night

didn't prevent what happened to him.

I agree totally with you that we need to support all branches of our

immune system to fight this illness, including deficiencies and

replenishment, but when people leave out the causal branch,

infection, we just keep spinning our wheels, getting ourselves stuck

deeper and deeper.

penny

>

>

> > My view is more inclusive than either of the ones above (and

allows

> > that both may be right).

> >

> > Historically, CFS/ME has been attributed to dozens of different

kinds

> > of infections -- retrovirii (the HTLV family), enterovirii (like

> > polio -- CFS is a lot like post-polio syndrome), herpes virii

(HHV-6,

> > EBV), bacterial infections (chlamydia, mycoplasma, etc.), mold

and

> > fungi (in a variety of forms), and spirochete-based infections

like

> > Lyme and babesia.

> >

> > There are people on this list with every possible variant and

> > combination of these: it seems likely that they ALL are probable

> > culprits. Ultimately, this rogue's gallery of infections have

brought

> > us all to more or less the same rather incapacitated place. To

me,

> > this suggests a model in which one or more of these initial

causes

> > forces the immune system to up-regulate. While the various

infections

> > themselves are different, the cumulative and cascading effect of

this

> > up-regulation ends up looking pretty much the same no matter what

> > started it. Those similarities are the symptom set we now call

CFS/

> > ME; the various original infections that brought us here create

the

> > various subsets of the disease.

> >

> > My observation has been that this illness needs to be addressed

on

> > three separate levels. All are equally important, and none

should be

> > pursued at the expense of the others.

> >

> > The first, of course, is the hunt for the underlying infection,

in

> > the hopes that once it's identified, it can be treated. It

should be

> > remembered all the while that not all of them can be identified;

and

> > if identified, not all of them can be treated (particularly if

our

> > immune systems respond to the various infections in this

particular

> > way because of some genetic problem, which is the current

theory).

> >

> > It's also important to remember that just finding one causal

> > infection may not be the whole answer. There may well be more

than

> > one infection going, especially for those of us who've been sick

for

> > a long time. In any event, finding even the first one can take a

> > while -- hell, even finding a doctor who is willing to pursue it

with

> > you can take years! -- so, while working this level is what

brings us

> > to the Holy Grail of a full cure, it can't be the only means of

> > attack. We need to be realistic about this: many of us will

spend our

> > lives looking for this answer, and still go to our graves without

> > one. Or, we may find our answers, only to discover that there's

> > nothing that can be done.

> >

> > That's why we devote attention to the second level, which is

figuring

> > out how to get yourself something like a life while you're

working on

> > the first level. This is where immune support strategies like

> > glutathione, B12, methylation correction, and so on can be of

> > tremendous help. At their very best, these strategies may

actually

> > empower and balance the immune system to the point where it can

> > effectively eliminate the underlying infection, whatever it may

be.

> > But, even if that doesn't happen, they can reduce the amount of

> > systemic inflammation, toxicity, and aggravation (allergies,

brain

> > fog, joint pain, sleep problems, etc. etc. etc.) to the point

where

> > you can make significant strides toward getting your life back.

> >

> > I've been sick for over 20 years. When it comes to Level

One...well,

> > I know there's an underlying infection in there somewhere -- and

I'm

> > looking for it -- but it's nowhere in sight at present. So all

the

> > gains I've made -- and I've gone from 30% functioning to about

85%

> > over the past eight years -- have been in the Level Two domain.

It's

> > not an ultimate answer, but I'll take every minute of improvement

> > it's given me.

> >

> > The third level is maintenance. Over time, this damned disease

takes

> > a permanent toll on the organs -- hypothalamus, pituitary,

adrenals,

> > thyroid, heart, brain, liver. The longer it goes, the more

damage you

> > sustain, and the lower the odds that it can ever be completely

> > repaired. So, until the day the underlying issue is found and

> > resolved, there need to be steps taken to compensate for this

damage

> > (usually in the form of thyroid, adrenal, reproductive hormone,

and

> > other medications that take over the work of malfunctioning

organs),

> > and do what can be done to limit future damage (usually in the

form

> > of supplements that support vulnerable organs, eliminate toxin

> > buildup, and reduce oxidative stress). Again, gluthathione is

very

> > useful here in forestalling organ failure.

> >

> > To recap: All of this is important and valuable. We often hear

from

> > people on this list who insist that Level One is the only level

worth

> > pursuing. If I'd listened to those people, I'd still be spending

five

> > days a week in bed, no better off now than I was in 1996. The

truth

> > is that, for many of us, finding the originating cause will be

the

> > work of years. There is nothing wrong (and everything right!)

with

> > doing whatever needs to be done in the meantime to keep oneself

> > functioning, and improve quality of life to the point where it's

> > still worth living even if the answers are never found.

> >

> > Sara

> >

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