Re: my test results

[Guest guest]

Hi Sandy,

I think I am a little familiar with your recent history with feeling

" yukky " . Because of my area of expertise I want to answer your

questions from the lab test point for view.......

The only thing that I can say, from my experience, is that if you

are being seen by a PCP for this....and the auto-antibody tests

are being ordered and interpreted by this same PCP that this

could be where you are running into problems. In my experience

there are many deficiencies in auto-antibody tests that are run as

a " screen " . (I have specific knowledge of ANAs and other tests

run for rheumatological problems.) In addition, many doctors do

not know how to interpret the results of those....they think that a

negative definitely rules out those types of diseases. In real life,

that is just not so. Depending on how the test was run and what

manufacturer made the test kit, there may be reasons for a

negative reading that has nothing to do with the antibody not

being there. Not that I want you to think that all lab tests are

unreliable, they are not...it is just that they are seldom black and

white and they can never be interpreted without knowing how

they were run and what the patient is complaining of. A lab test

by itself is meaningless....it must be put into context. So my

recommendation is that, if possible, see if you can get in to see

a specialist. If you are thinking rheumatology diseases, see if

you can get into see a rheum....CFS maybe an infectious

disease person, probably endocrinology....(although I think

rheum people handle this too and maybe neurology)......

Please do not be discouraged based solely on lab

tests.....especially the auto-antibodies. There is so much

inter-laboratory variation in the results, as well as less than

optimal interpretation of them by the ordering physician that it is

to your benefit to go directly to a specialist that can order the

more appropriate tests and understand their limitations and how

to put their results into the context of the patient's specific

problem / complaint / history.

As an example to illustrate what I mean: When I test my serum

for the presence of ANAs I am positive using the method that is

considered the " gold standard " . This has been confirmed by an

outside reference lab that is world reknowned for analyzing

ANAs. However, when my serum is sent to a large for-profit

screening laboratory that is set-up to tests thousands of ANAs a

week my results are negative. This is because they are using a

test system that can run many samples in a small amount of

time at a small amount of expense. The " gold standard " method

that I use is very time consuming, thus more expensive to run,

but usually gives out more meaningful results. Does this mean

that the other test is wrong and the one I use is more " correct " ?

Not necessarily....what it means is that I am dealing with a more

specific population of patients that have been " weeded " out, so

to say, and we need to get more detailed information about their

condition. The assumption behind the first test (the one that

turns up negative for my serum) is that only the most important

or more statistically significant antibodies are screened for and

that those that are missed are unimportant and not pathological

(which may be true - only time will tell). And, it allows more

people to be screened who wouldn't be if they used the other

test. So it is hoped that more ill people will be identified this way.

However, if your doctor is not aware of these limitations.....and

relies solely on this screening methodology and interprets a

negative result as written in stone, even though the patient may

have a history consistent with the presence of ANAs.....then this

is an inappropriate use of the screening test. It is good medical

practice in a case such as I just described, to send the blood out

to another lab that tests for ANAs in a way different from the first.

If another methodology confirms the screening test then you can

be more assured that the antibodies are not present. Of course,

no tests are 100% sensitive and specific so there will always be

false negatives / positives...but the confirmation testing as I

described is about as good as you can go with cases that are

confounding and frustrating.

Sorry that this became a lecture in lab tests but I really believe

that patients and doctors have to be aware that there are

limitations in tests results and that the patient's presentation

must be more influential than a number or phrase written as a

lab result.

Laurie

[Guest guest]

Sandy,

I know, I don't want to feel that way either, but I do since I have CP

with other multiple health problems. But if it's not just you who don't

feel good about seeing this doctor and FNP, then somethings fishy

there. I'd really think about seeing another doctor for this, but get

copies of all the tests this doctor has done so that you, hopefully,

don't have to reinvent the wheel with the new doctor. I wish there was

more I could do to help you.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.