Re: low SED rates & Impedance Cardiography Testing

[Guest guest]

Good question. Maybe someone here has some info.

I think you can pretty easily see the deformity of the cells under a

scope. Tony's been harping about our messed up red blood cells

forever. I think he sees it pretty frequently.

Unfortunately, I'm not sure knowing it will help us all that much

except it's a piece of the puzzle for us to better understand what's

going on.

I know how you feel about your doc wanting to pass the buck. I go to

so many docs with reams of lab tests and a list of symptoms that ALL

point to a chronic underlying infection and they still feed me party

line stuff like... " maybe the reason antibiotics help you feel better

is because some of them have antiinflammatory properties " ....

Yeah, yeah, yeah. So do steroids, but I don't get energy from

steroids like I do from the right abx.

And when I present test data that prove I've got resistant bugs,

doc's use this line (heard it yesterday)... " well you have so many

underlying issues, it's hard to know which one we're dealing with,

and how much improvement you can expect from this

treatment/procedure... "

It's frustrating. That's a given. They ARE always passing the buck.

Very few docs really want to take the time to try to put all the

pieces together. I suppose I don't blame them, but it's our lives

here!

Nobody, not even I.D. docs, like the idea of chronic infections.

Not only are we battling the bugs, but we're battling apathy from

the docs. Not only do we have to show/prove we're sick, then we've

got to put on some kind of convincing show with our 'winning

personalities' that we deserve to be kept alive. Sometimes trying to

get good diagnostics feels more like running for president of the

United States. :-)

I am lucky in the sense that my general doc does believe I'm dealing

with chronic infection. Unfortunately, he's not all that well

equipped to do anything about it and pretty much just cooperates in

supporting whatever things I bring to him to try. Orders tests,

prescribes drugs, etc. If it weren't for him, I think I'd be up the

creek.

penny

>

> Oh cripes, my ESR has been tested at 3 and 0. I tried to tell my

> doctor that was bad and he wouldn't listen. I have a lot of pain.

>

> Is there a special test for these deformed red blood cells? A

2002

> " Red Cell Assessment " says " Anisocytosis, slight " . I googled and

got

> " Anisocytosis means that the red cells are of unequal size. It is

a

> feature of many anemias, and other blood conditions, and does not

> have much diagnostic value. " So is there a different test I could

> have to detect bent RBCs?

>

> Not that my GP will be happy about more ESR questions. The Lyme

> diagnosis works great for him because it keeps me OUT of his

office

> and in somebody else's hands.

>

> - Kate

>

> > " ....The best endogenous scavenger of nitric oxide is

hemoglobin.

> > [Hemoglobin is the " red " in red blood cells – a protein that

> > transports oxygen from the lungs to the tissues.] " When

hemoglobin

> > scavenges nitric oxide, the nitric oxide bends the hemoglobin,

> > causing the red blood cells to deform. Dr. Les Simpson in New

> > Zealand found that the red blood cells of CFIDS patients were

> > deformed,

> > and when they're deformed they can't get through the capillary

bed

> > very well and can cause pain. "

> >

> > " An indication of this [RBC deformation] is it also drops the

SED

> > rate. CFIDS patients have the lowest SED rates I've ever

recorded,

> > and the ones with the lowest SED rate may have the greatest

> > degree of pain. " [sED rate refers to sedimentation rate, and is

> > listed as ESR on many lab tests.]

> >

> > " Do you know what your SED rate is by chance? Normal for you

would

> > be 15 plus or minus 5. That's according to the British

literature.

> > A female your age has a higher SED rate than children and males.

> > And you're probably down around 0 to 3. Which means you have

Nitric

> > Oxide binding hemoglobin, and therefore you have an induced

> > hemoglobinopathy, and red cell deformation and a low SED rate on

that

> > basis. "

> >

>