All this HLA-B27 gene marker talk

[Guest guest]

Recently a lot of folks on the list have been talking about the HLA-

B27 gene marker test and its implications.

Any " doctor " who tells you that merely testing negative means you

" can't have ReA/ReC " is a complete and total jackass and should be

stripped of their medical credentials on the spot if you ask me.

The one actual rheumatologist that I have been able to see in person

here in Maine (this is among numerous consultations I have had by

phone, online, iChat AV videoconference and other means with more than

two dozen other rheumatologists & several other specialists over the

past eight years!) in the past year due to my MaineCare geographical

coverage limitations and the massive, outrageous lack of decent

rheumatologists in Maine.....at least in the southern/central areas.

We are trying to find someone good up north/east but even short drives

are a huge nightmare for me most of the time and going that far is

something I would need a degree of certainty about with regards to no

more uneducated, compassionless greed-head rheumatologists......

In any case, it's a lot more than just 20% of ReC/ReA/Reiters patients

and those with overlapping conditions/diagnoses that actually may have

the same underlying group of causes.....and this is the important

point here. GROUP OF CAUSES.

Even the single " name " Reactive Constellation implies that it is a

cluster of several conditions, and the list is not always the same

with every person. They do tend to fall within a range however and the

list tends to get very long over time as the immune system turns on

ever more tissues with ever greater intensity.

The big theory among LEADING auto-immune scientists is that there is

not merely one -- HLA-B27 -- but indeed quite a few, including more

HLA-XXX class markers and others all across the genome, which can

bring about the cascade of malfunctions that results in ReA/ReC.

If you follow the news articles posted automatically and by our

wonderful moderator(s) here on the list you'll read about some of

these being already discovered. Those we have found so far imply more,

and these are being uncovered steadily. Keep an eye on the truly

advanced medical news PR and breaking science-research articles. I

know that not everyone takes my degree of interest in the details of

advanced science but the basic genetic knowledge coming out of it is

really not so terribly complicated at all.

Most doctors, even rheumatologists and even relatively good ones,

don't know and/or don't have practical access to these new tests other

than the long-standing B27 marker test which has been around for many

years. Usually only researchers, not front-line rheumatologists, have

these tests to date but they SHOULD be appearing in better doctors

offices soon. Not just official rheumatologists, but better general

practicioners as well IMHO.

In short, being HLA-B27 positve does mean something -- but being

negative does not. It only tells you that the cause of your runaway

auto-immunity is rooted in other genes and/or other trigger sequences.

There is not just one route to Reactive disease and there is not just

one Reactive Disease. Hans Reiter's name is being disassociated from

this not just because of his later associations with the Nazi Party --

it's being renamed Reactive Arthritis or Reactive Constellation

because a single name just doesn't fit the reality. It never did, and

we are finally getting that message out thanks to the speed of the

social Internet despite the pathetic snail's pace of so-called

" professional " rheumatologists who don't seem to have done any actual

READING of RESEARCH (perish the thought -- doctors reading the latest

research!!! ***sigh***) since they graduated med school in something

like 1964 or 1973.....beyond outrageous.

- from Maine

P.S. - Yes, this little novelette will indeed form the basis of much

writing I will be doing with my now-recovered (auto-immune neuropathic

paralysis sucks!) typing hands on a new health/sufferer-advocacy/

patient-support-group site(s) that I'm hard at work on as we speak

with my new servers and a whole bunch of Wordpress/DotNetNuke

awesomesauce.....URLs and such soon. I plan to be a friend and ally of

the RISG, in no way a " competitor " ! :-) As ever if I step on any toes

I will happily make things right, Rick Hahn et al :-)