Weighing in on the issue

[Guest guest]

Hey everyone,

Been reading all the various emails regarding the latest issue to hit these

boards and wanted to just make a few comments.

As a long time BB member and long time SD and RA patient...I have seen it all

here....

We need to always keep in mind that people, patients are scared...scared

witless...as I was early on...these diseases can be a death sentence...even for

some who try everything, including antibiotics! What works for some, will not

work for everyone. Some need to add dietary change, some need to juice

exclusively, some need to do a detox, etc..etc...Despite doing everything one

can, some patients do not respond to anything...and despite their best efforts

and will to live, they die. These diseases are scary but at places like this BB

we can all be supportive and caring....even if a patient refuses to see things

our way...each of us have to come to conclusions on our own...they either will,

or they won't.

Some, like me...cannot stay on the abx protocol...I developed a severe lung

condition either from the minocin or from the RA...but either way I could not

stay on the abx protocol..

Having said that....let me add that the 2 years I was on the minocin, I did

well, veryyyy well...most, if not all of my symptoms went away...I was

devastated when the lung condition hit and because it has occurred in minocin

use and RA...My DR pulled me off the minocin...

Sometimes, for whatever reasons, patients are reluctant to go against what their

DRs recommend...we all know that...those of us who have been ill a while know we

have to make our own decisions...for some....like my mom for example, she takes

whatever her DRs tell her to take...I feel like I have earned my wisdom through

trial and error, what works for me, listening to my body and asking for and

receiving the great support and help on this board...Ethel has been a Godsend

and not just about abx protocol but about juicing, detoxing, coffee enemas,

etc...

Every new little symptom would simply freak me out...it takes time to learn to

live with these diseases...to deal with everything hitting us seemingly all at

once....and there is soooo much info we are hit with when first diagnosed...it

is normal to waffle back and forth...it is also very normal to be veryyy unhappy

with your DRs...I have had some real DUDS! One physician told me and I quote

" Why are you fighting this so hard, its terminal "

One Dr yelled at me for going back to Boston to see DR. Trentham, calling me

irresponsible...Some rheumatic patients were upset with me because during a

support group meeting here in town that I ran, I called in a world class

specialist to discuss SD lung disease...he worked out of Ohio State, he was

willing to come to my meeting and speak about new developments, I did it! I took

much heat for that because he was not a proponet of the abx protocol...but he

gave us good info and spoke eloquently about advancements in care...Education is

arming oneself to battle these diseases....

Lets not get bogged down in being judgemental of others...we each have to reach

conclusions on our own, in our own time. You know the old saying, you can drag a

horse to water but you can't make them drink...there you go...

Case in point...here in town...local gentleman in the paper, dying of the same

lung disease I was dx with..Obliterative Bronchiolitis...my case was either

caused by minocin use or the RA...it has been written up in journals as both, so

who knows...his case...not specific...no minocin use, no RA...but he is in the

paper, he is dying and giving an interview...he is on the lung transplant

list...AS WAS I....I look him up and call him...the form of chemotherapy I used

to stop this disease in its' tracks is available here...he is veryyy excited, he

speaks to his physician...his DR tells him, nah, it does not work...we will just

wait for the lung transplant...OKKKKKK! What can I do? I met with him, gave him

all the information, showed him my lung function tests, before and after...his

Dr told him nah...lets do the lung transplant.....the patient decided to do what

his DR wanted him to do...get a lung transplant, take a lifetime of anti

rejection drugs...ok....no concrete evidence that the lung disease will not come

back with a lung transplant...because if his body is causing it...what stops his

body from the OB attacking his new lungs??? Ah well...I tried, I tried

hard...last I heard from him, he was still waiting for his lungs and on veryyy

high doses of steroids...

My big point here, in case you missed it as I rambled on.. :>) is that some of

us take a while to come around, and some never do...we are here to be stewards,

guides to help others...to give back to patients as was given to us...I may not

use the abx protocol any longer but I still have a wealth of knowledge to offer

re labs and physicians, etc...and others here have a wealth of knowledge to

offer re alternative treatments to augment or help our diseases...

I have vented many times about physicians here...and believe you me, I have

fired more than I have kept...I have learned what to look for and what to

ask...and from this board and several patients, I have learned when Drs needed

to be fired...sometimes venting is all we need to do...just vent to others that

understand, that have been there themselves.

Everyone here is battling for their lives....I get it...lets be sure we don't

turn any patients away even if they are not quite on our wave length yet...do I

think the ABX protocol works...without a doubt! ....do I think its worth

trying...Absolutely! I would be on it if I could...but....everyone has to come

to their own conclusions...in their own time...

Hugs, Debbie in Cincinnati..(Scleroderma, RA and Sjogrens Syndrome)