Re:underlying diffs/similarities in diagnoses

[Guest guest]

I would NEVER suggest that diagnostic categories be manditory or

anything like that! And as for its relevence, well, its less a

matter of believing that diagnoses are indeed relevent/meaningful,

and more a matter of wondering whether they are relevent/meaningful.

Just a compulsive data collector/evaluator I guess.

I am recollecting that when I read a post about, for example, B12

effects or mino/HCQ, I just wonder if this is being used by someone

with what is being called sarcoidosis or CFS or Lyme or multiple

chemical sensitivities or whether they additionally have allergies

or whatever. I wonder about these sorts of things as I create

my " big picture hypothesis " in my head as I read... I wonder if any

differences among these " diagnoses " will sift out as we collectively

add our " data " to this grand " experiment " (ah, what I wouldn't give

to be in the non-disease control group!) or even if new diagnostic

categories will emerge...

~DM

[in the lab in grad school way back when, our advisor once came in

and asked, " Does anyone want a ride down to the parking lot? " the

parking lot for grad students being about 2 miles from our building

due to renovations. Several folks responded in the affirmative.

She said, " OK. Just collecting data... " and left the lab alone. A

few minutes later she came back with a wicked grin and gave us all a

lift... such is my academic heritage!]

>

> 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

>

>

[Guest guest]

> I wonder if any differences among these " diagnoses " will sift

> out as we collectively add our " data " to this grand

> " experiment " (ah, what I wouldn't give

> to be in the non-disease control group!)

Uh YEAH. Can we start over?

> or even if new diagnostic

> categories will emerge...

I agree on the importance of this. I have my suspicions about what

microbiological and pathological features all the diseases may have

in common, but the differences are sometimes puzzling and totally

crucial to keep track of.

Alas, the dxs used practically dont capture all the meaning one

wants to keep track of. Take CFS and lyme. Regardless of positive or

negative lyme serology, anyone with CFS or lyme will have the same

response to some abx, as shown by Dontas studies. When people have

CFS I also generally assume theres at least a 90% chance theyd be

culture positive for Bb, regardless of serology or geography,

because of the Mattman 1998 study. But what exactly does that mean?

After all, there are asymptomatic lyme infections out there - and

the established view that healthy people contain no significant or

stable quantities of bacteria is probably quite wrong. And its hard

to be certain *what* lyme disease is (tho some have suspicions)

since most (not quite all) authors find so few borrelia in tissues

(there are some interesting possible reasons for this).

On a related note, when people have a non-quantitative positive PCR,

or a high antibody titer, for X - thats definitely something to

consider, but it doesnt prove that X wouldnt be chilled out promptly

if Y werent wrecking the immune system. Anyone could have one or

more keystone pathogens and one to a billion other things that are

just picking on someone who's down. These secondaries may or may not

be responsible for any significant symptoms - but regardless,

ultimately, today or someday, you want to go after the big keystone

infection(s).

One of the only ways to really show that a given organism is THE

problem is to find it, all over the place, with a microscope. There

can be other ways.

So its good to know if people have like granulomata or something,

any particular characteristics - alas, its all pretty complicated.

I wish more investigators were taking a very, very, very close and

careful microbiological/histological look at these diseases.

[Guest guest]

eric, re:

authors find so few borrelia in tissues

(there are some interesting possible reasons for this).

There was some kind of 3-d imaging study by NIH some years ago that

showed tremendous numbers. We may not be able to image them correctly.

Also Nick of Igenex says that in babesia, though only 1% may

parisitize the obvious red blood cells, bone marrow testing will show

20% of bone marrow infected.

SO we may not be looking in the right places or with good enough

instruments.

[Guest guest]

Ooh! I didn't know Nick had said that about bone marrow

testing for Babesia. Very interesting.

I've never seen a reference to that. I wonder if there's one on the

Igenex site...

Thanks for sharing that, Jill.

>

> eric, re:

>

> authors find so few borrelia in tissues

> (there are some interesting possible reasons for this).

>

> There was some kind of 3-d imaging study by NIH some years ago

that

> showed tremendous numbers. We may not be able to image them

correctly.

>

> Also Nick of Igenex says that in babesia, though only 1%

may

> parisitize the obvious red blood cells, bone marrow testing will

show

> 20% of bone marrow infected.

>

> SO we may not be looking in the right places or with good enough

> instruments.