Re: s

[Guest guest]

Hi ,

I hope it's OK if I jump in here :-)

I'm guessing that is referring to the idea that many, most, or

some auto-immune diseases are linked (maybe not exactly " caused " , but

at least a co-factor) to an infectious agent. This idea is supported

by Dr. Nicolson (remember his articles at www.immed.org ?) and Dr.

Franco (his website and articles are at www.thearthritiscenter.com )

and is also suported by other doctors/researchers. (Granted, this

idea is not supported by 100% of the medical community, so you will

find both supporters and detractors, each convinced that theirs

is " the answer " .)

Yes, it's true that there is little to no data specifically linking

RP to any particular infectious agent. This does not mean that there

is not a link, just that the study has not been done. Studies cost a

lot of money, and usually the pharmaceutical companies fund the

studies in the hopes that they will gain financially from sales of

the newest drugs. There is little profit to be gained by the

pharmaceutical companies from antibiotics that are already on the

market, and that have expired patents which makes them elegible for

generic marketing.

So.....in medicine, as with lots of things, some ideas are neither

black nor white...they are somewhere in the gray area in between.

That's why we have doctors and researchers continually looking into

new possibilities and for that, I am very thankful. Most physicians

insist on following published data gleaned from double-blind studies

in treating their patients. This usually works as a safeguard, but

it does not always allow for rapid acceptance of new treatments and

ideas.

The whole idea of " auto-immune " means different things to different

doctors. The common explanation suggests that for some " unknown

reason " the body goes haywire and starts attacking itself....whether

its the joints in RA, the muscles in polymyositis, or the ears and

tracheal/bronchial cartilage in RP.

Another explanation suggests that a hard-to-detect infectious

agent...be it mycoplasma, virus, bacteria or some combination...slips

undetected inside the joint, muscle, or cartilage, etc. cells without

killing the the cells. When the infectious agents leaves those

cells, possibly to reproduce(?), they take a part of the joint,

muscle, or cartilage cell with them. Then, when those infectious

agents that have taken a part of the host cell start circulating into

other parts of the body, the body indeed takes notice and mounts an

attack on all cells that match....including the innocent ones in the

joints, muscles, and cartilage, etc.

So......these are just my ideas here. Hopefully we can continue the

dialogue and encourage everyone to keep looking into possibilities.

Take care,

Connie H

(...I just noticed in your signature line below that you

are/were a phlebotomist.

A couple of years ago there was an unofficial count in the rheumatic

group of those people with " auto-immune " diseases that had previously

worked in the medical field....usually in labs, or with blood, or as

a nurse, etc. Most people in the rheumatic group are treating their

disease with the antibiotic protocol, based on the assumption that

there is an infectious cause to these diseases. I wonder how many

people in this RP group have worked in the medical field?

Also, many in the rheumatic group reported that they had needed some

sort of surgery prior to coming down with a rheumatic disease. The

question was whether they picked up some slow-growing infection

during the surgery or recouperation process. Again, I wonder how

many people in this RP group went through a surgery prior to

developing RP?

Please, if anyone is interested in replying to these surveys in

addition to 's question on gastrointestinal problems. It might

help us all!

Thank you, Connie

>>>>>>>>>>>>>>>>>>>>>>>>Original Message<<<<<<<<<<<<<<<<<<<<<<<<<

> > Wanna try an experiment: Next time you get one of these

headaches:

> take a

> > " Stim U Dent " to your gums. You may feel the headache modulate

> somewhat.

> > Also drink hot cocoa. High in magnesium.

> >

> > I think that the aches are caused by a bacteria; present with

> RPer's . Now

> > when I find the exact bug we will also celebrate. Till then the

> gums and

> > cocoa for headaches.

> >

> > Question: have you ever had any type of gastrointestinal probs?

> >

> >

> >

[Guest guest]

Oh nancy

To say i'm sorry, just isn't enough. But please do blame yourself. I'm sure that your dad was very happy just to be at home with you and all of the love and concern you have given him in his last days. Just remember like you said he is with your mom now and not sufferering, i'm sure he is happy at last. Please take care of yourself, my thoughts are coming your way, I've been there and done that, and I too thought my world had ended. It does get easier as time goes on, even though you won't forget, you will learn to accept. If you need to vent anything at all, i'm here.

take care

love to you and your family

dawn

nant8 wrote: Just a short update. I went to wake my dad this morning and found him dead on the floor. I am going through a guilt trip because I was in the kitchen making him some french toast and never heard him so I dont know if he tried to call me or what. When I checked on him earlier he was sleeping but he had been up all night coughing and not feeling good. I called the Dr. and was bringing him in . I am still in shock but I know he is home in heaven with my mom. I know I probably will not word this right but I couldnt sleep and after dealing with the ambulance people, funeral home and graveyard and family and friends I just felt like I needed to tell my other family. The visitation will be Thurs. night and the funeral Fri. so it will be a stressful week. I hope you find some relief soon Sharon , I am on Bextra also. I am saying and extra prayer you fly through your surgery.I will keep all of you in my prayers and especially to all the worriers and naggers that they do a good job keeping the group going.love and hugs to all