Bleu, Norman

[Guest guest]

Bleu you say there is lots afoot these days with abx treatment of

ReA. Do yall know of any lists of ReA and crohns patients doing abx

treatment? I know there are crohns organizations devoted to the MAP

pathogenesis; surely some people associated with that are doing

treatment outside the vanguard research clinics like Borodys?

Now we have CFS and MS people together at cpnhelp discussing heavy

treatment regimes (altho ILADS has always done some tx of MS-, ALS-

types, etc). Thats cool. I wonder if it might eventually be useful to

get everyone who is out there to be aware of each other.

I dont know exactly what could be accomplished in specific, but it

often occours to me that there may be some loss of opporunity in the

fact that youve got everyone off pursuing MAP, borrelia, or whatever,

and the findings suggesting this or that organism to be causal

somehow lack easy repeatability and cant be considered definitive

right now. It might be better to focus more attention on the clinical

utility of the treatments, and the wide range of responsive diseases.

Look at PMID 15468362, which showed an average of 50% improvement in

undifferentiated spodyloarthropathy. In order to ultimately see more

(ie, any) research toward improving antimicrobial treatment of our

kind, we probably need positive clinical trials for abx therapy. All

of us should be concerned to see a properly- and sensitively-designed

big phase III trial to follow up on PMID 15468362, even if you have

ALS rather than Undiff spondyloarthropathy.

*If* the main cause of the back-and-forth of positive and negative

trials in diseases like ReA is in fact that most of the regimes

tested are weak ones - then that idea may need to be promoted as a

hypothesis that should be tested. We'll see if thats really whats

going on, or not. I cant wait for, but am a bit apprehensive

reguarding, P Gibsons phase III trial on crohns. I'm hoping it will

show that the decades of contradictory studies on crohns were

primarily due to insufficiently bold regimes. I'm also hopeful to see

good outcomes on the Vanderbilt treatments via the lists, and what

happens there will also help to support or erode the " stronger is

better " hypothesis (which is not to say heft is the sole attribute of

the Vandy treatment, but it is a hefty combo).