Re: Welcome Duramater & underlying diffs/similarities

[Guest guest]

Thanks ! How kind.

Indeed, without knowing the archive you amassed, it is nevertheless

a crime that this information was wiped out without at least giving

the owner a chance to retrieve the files. Clearly, a resilient

group.

As someone new to this group, one thing that is a bit confusing to

me is knowing what illness each person has been diagnosed with. Not

that there aren't necessarily tremendous commonalities, so too might

there be important differences.

It might be the case that someone with CFS could have a different

underlying disruption in the immune system relative to someone with

Lyme (just using those two loosely as examples) even if they are

both infectious in nature. Moreover, additional underlying

conditions may also influence optimal treatment/underlying

conditions. For example, I have had asthma/allergies since

childhood. I've likely got IL-13 out the ying-yang and generally

ramped up Th2. I often wonder, what are the potential consequences

of attempting to down-regulate Th1 components (if I were to think

that relevent)? An increase in allergies/asthma? Nada?

Anyway, all this rambling to say, I'd love to have a sense of

people's " health context. " It feels like it would help me ( &

others? or is this a peculiarity in my thinking?) to assess some of

the ideas/treatments people discuss here.

Again, thanks for your kind welcome (and that poetic waxing on

early morning sushi!).

~DM

LD, (childhood-originating) asthma

[in the spirit of context]

> > > > Marie,

> > > >

> > > > I'm in agreement with . Career wise I deal with a lot

> of

> > > very complex

> > > > interacting systems and the KISS (Keep it simple stupid)

> > principle

> > > works

> > > > very very well. Every now and then when working a problem,

we

> > blow

> > > a whistle

> > > > and say " Let us take it from the top and not assume

> anything.. "

> > > Often when

> > > > we do that we find the problem quickly.

> > > >

> > > >

> > > >

> > > > For my family in treating CFS, I have done just that ---

back

> to

> > > the very

> > > > basics - first starting with nutrients that are used by the

> > immune

> > > system.

> > > > If there is a deficiency somewhere, then correcting that has

> the

> > > potential

> > > > of starting a cascade which may resolves many of the down-

> stream

> > > > complexities that researchers start chasing - net result: a

> far

> > > less complex

> > > > patient to treat. Chances are that we all have some symptoms

> > > caused by

> > > > nutrient deficiencies.

> > > >

> > > >

> > > >

> > > > The root item that I am back to, is nutrient deficiencies -

> with

> > > special

> > > > attention to Vitamin D deficiency. For nutrients the " not

> assume

> > > anything "

> > > > means that I will not assume the taking RDA is sufficient

for

> a

> > > sick-person,

> > > > instead, attempt to find the optimal levels in the

literature

> > and

> > > how to get

> > > > there. For Vitamin D, it appears to be 4000 IU/day for 4-8

> > months

> > > (and

> > > > afterwards keeping at at least 2000 IU./day). Of course,

> taking

> > > Vitamin D

> > > > means taking other nutrients that are needed to work with it.

> > > >

> > > >

> > > >

> > > > When I reviewed all of the literature in 2000, there was

three

> > > sets of

> > > > publications that actually alleged remission (and not just

> > symptom

> > > or

> > > > quality of life improvement) for at least 50%:

> > > >

> > > > Nicholson's

> > > >

> > > > Jadin

> > > >

> > > > Berg/Hemex

> > > >

> > > >

> > > >

> > > > Nicholson and Jadin both used long term antibiotics - with

the

> > > average time

> > > > to remission being 50% shorter for Jadin. Berg/Hemex used

> > Heparin,

> > > with some

> > > > having major improvements in days (one of the office staff

at

> > our

> > > MD office

> > > > was such a responder). Four of us did a combination of Jadin

> and

> > > Berg with

> > > > 50% going to full remission and 50% to major improvement.

> > > >

> > > >

> > > >

> > > > In general, take with a salt-lick [a block of salt] anything

> > that

> > > uses

> > > > **may** or **likely** or **suggests** -- all of these words

> > > indicates

> > > > speculation. Take with a touch of salt, stuff that have

been

> > > published on

> > > > medline (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi )

> which

> > > has BOTH a

> > > > trial and a control population. To me, the gold standard

has

> > > been, and

> > > > continues to be, medline citations. PWCs experiences will

> often

> > > cause me to

> > > > search medline to see if there is evidence to support the

> > > experience (and

> > > > gotchas).

> > > >

> > > > Ken Lassesen,

> > > >

> > > >

> > > >

> > > > _____

> > > >

> > > > From: Schaafsma [mailto:compucruz@y...]

> > > > Sent: Saturday, March 26, 2005 2:43 PM

> > > > infections

> > > > Subject: [infections] Re: Gigi's Doc posted

by

> > Gigi

> > > on

> > > > Lymenet

> > > >

> > > >

> > > >

> > > >

> > > > I partly share your response, Marie.

> > > >

> > > > On the other hand, because they are looking at a larger

number

> of

> > > > variables, they may very well identify things that DO need

to

> be

> > > > addressed, in some cases, for recovery to 'take.'

> > > >

> > > > This is why I make a point of keeping a lot of salt around

the

> > > > house. Since virtually everything one reads about Lyme

disease

> > > needs

> > > > to be taken with at LEAST 'a grain of salt', one wants to

have

> a

> > > > good supply handy.

> > > >

> > > >

[Guest guest]

DM wrote, in part:

" I'd love to have a sense of people's " health context. " It feels like

it would help me ( & others? or is this a peculiarity in my thinking?)

to assess some of the ideas/treatments people discuss here. "

I'd love to see that happen more myself, but want to emphasize that we

don't require it. One of the (many) offenses of the Site We Do Not

Name is that patients were harassed about including their diagnostic

and other health information in a signature line that everyone could

view.

There's absolutely nothing wrong with asking for that information, we

just have to be clear that disclosing it isn't a requirement for

participation.

Your post makes me think that like a lot of us you too are skeptical

about whether these differential diagnoses are always accurate,

meaningful and complete. But I agree with you, they are still relevant

enough to want them for context.

I've had differential diagnosis on the brain lately, sorry to go on so

long. :-D