Re: sorry Jeff ...................

February 24, 2003

Hi Lynne,

Reading your post l wish l could reach out and cure you and all others in

this world suffering from horrible auto immune diseases. ls your husband a

scientist also? Having pre med is wonderful, especially with

drugs/chemicals. Have you talked to your doctor about going up (exceeding)

the required dosage? Perhaps you might want to look into another

antibiotic. Do you do IV's at all? My god it is in your entire family. l

know l have not been much help to you up to this point but if there is

anything and l mean anything that l can do, please let me know. l am

sending you a list of antibiotics, but for mycoplasmas. Maybe you and your

doctor can go over them and see which ones would work for you. Let me know

if you receive them. l am having trouble with my computer. l too am not

having much luck with the AP but that is no reason for you or me to give up.

We must continue. Life is worth it. Take care Lynne and God Bless.

Here to help you,

Ginger

rheumatic sorry Jeff ...................

> > Date: Sun, 23 Feb 2003 09:36:08 -0500

> >

> > Ginger,

> > Likewise my ANA was normal and then increased coinciding with fevers.

My

> > Sed Rate also increased. Both returned to normal after discontimuing

the

> > minocin, but I do recall my Dr commenting that sometimes they do not

return

> > to normal. Whether he knew specifically of this through a patient or he

> > only was aware of it, I do not recall. Regardless of how its classified

or

> > termed, and regardless of its frequency, an autoimmune response to the

> > antibiotic is initiated in some cases, and if not addressed, can

potentially

> > have long term implications.

> > Jeff

> > *******************

> > Hi Jeff,

> > Maybe what you were experiencing was effects of the minocycline

attacking

> > the organism . Sed rates and ANAs will increase when the AP is effective

> > the key is a good AP dr currently using this therapy can differentiate

> > between a lupus like syndrome which is NOT what you described and an AP

> > effective reaction . Having an elevated sed rate and ANA is not a lupus

> > like reaction. Are you currently on any antibiotic now ?? Did you know

ANAs

> > can just about be effected by any drug ??? The other drugs that have

been

> > know to effect an individuals ANA didn't render a lupus like reaction

either

> > in fact no reaction other then an elevated ANA . This is very common

with

> > MANY of our labs . Did you know Tylenol when taken intermittently can

cause

> > liver enzymes to be elevated .??? The list goes on!!

> > An auto immune response as you call it may very well be the effective

> > reaction of the antibiotic working on the disease . The long term

> > implications from the disease can have potentially long term problems

if

> > not treated in a timely manner which has nothing to do with the

minocycline

> > . Warm regards,

> > socjog

> >

February 24, 2003

Morning Ginger,

Dr Ts Kathleen turner is a " star " patient cause she is a star LOL . I am

not just a believer in AP therapy sometimes other drugs and the progression

of the disease are needed . So if he has Kathleen on conventional

therapy drugs I do not take issue with this as I know nothing about her

disease progression etc. I am a strong believer that we all if possible try

safe treatments first but if the disease is progressing faster then the AP

can work well one must do what one must do . Sometimes conventional therapy

drugs when used with alternative therapy choices compliment each other quite

nicely .

I am NOT in remission just close as I still am symptomatic and have some

elevated lab tests. I am grossly improved and close to remission . Im also

OLDER LOL and what old people have to say definitely counts in my book too

some of their life experiences are far more educating then that which we

read in a book .

I too really dont get upset with those that disagree with what I post . I

think if we all were of the same opinion well then the world would be

somewhat boring . I do like to try to stick to facts as often as I can and

it think when one sometimes quotes what a friend was told from another dr

sometimes things get a little misconstrued . Thanks for sharing this

dialogue and your kind wishes . I wish for you only wonderful healthy days

ahead as well . Warm regards,

socjog

Re: rheumatic sorry Jeff ...................

> > > > > > >

> > > > > > > > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> > > > > > > >

> > > > > > > > > Actually, it's lupus-like symptoms that can evolve into

the

> > > actual

> > > > > > > disease

> > > > > > > > > or some form of it if not resolved.

> > > > > > > > > ***************************

> > > > > > > > > Hi Jeff,

> > > > > > > > > Nope never happened never proven . There was only one

> patient

> > to

> > > > > date

> > > > > > > that did

> > > > > > > > > develop lupus but again it was not established prior to

> > > > minocycline

> > > > > > > treatment

> > > > > > > > > if in fact she had dormant lupus to begin with .

> Minocycline

> > > > > therapy

> > > > > > to

> > > > > > > the

> > > > > > > > > best of my knowledge has never been proven to be caused by

> > > > > minocycline

> > > > > > > therapy

> > > > > > > > > . Warm regards,

> > > > > > > >

> > > > > > > > Socjog, you're just wrong here, the fact that minocycline

can

> > > cause

> > > > > > > > drug-induced lupus has been known for a long time. You are

> > talking

> > > > > about

> > > > > > > one

> > > > > > > > study which has been published recently, but if you check

the

> > > > > > literature,

> > > > > > > > you'll find drug-induced lupus has been associated, rarely,

> with

> > > > > > > minocycline

> > > > > > > > and a number of other drugs for years now. The one study you

> are

> > > > aware

> > > > > > of

> > > > > > > > happened to be among teenage acne patients, and easy group

to

> > > > isolate

> > > > > > and

> > > > > > > > study, because that is the group who has used minocycline

the

> > most

> > > > > > > > previously.

> > > > > > > >

> > > > > > > > To quote Arthritis and Allied Conditions, a standard

> > rheumatology

> > > > > text,

> > > > > > " A

> > > > > > > > variety of drugs have been implicated as capable of

producing

> > the

> > > > > whole

> > > > > > or

> > > > > > > > partial clinical or serologic features of SLE. " Dr. Brown

knew

> > > this,

> > > > > and

> > > > > > > > other doctors who are skilled in using AP know this, and

take

> > > > adequate

> > > > > > > > precautions.

> > > > > > > >

> > > > > > > > Drug induced lupus is distinguished form idiopathic lupus by

> > some

> > > > > > > > differences which can be found in serum autoantibodies, and

by

> > the

> > > > > fact

> > > > > > > that

> > > > > > > > stopping the offending drug, as with Jeff and minocycline,

> stops

> > > the

> > > > > > lupus

> > > > > > > > symptoms.

> > > > > > > >

> > > > > > > > Read the material on the rheumatic.org site, you'll find the

> > > > > information

> > > > > > > > there. Minocycline is also associated with autoimmune

> hepatitis

> > > and

> > > > in

> > > > > > > rare

> > > > > > > > instances a dangerous brain swelling. It is not wise to be

> > taking

> > > > > > > > minocycline and also deny the possibility of any adverse

> > effects.

> > > > > These

> > > > > > > are

> > > > > > > > quite dangerous if you are the rare individual to whom they

> > > happen.

> > > > > > > >

> > > > > > > > Like any drug, one should be aware of the potential down

sides

> > of

> > > > any

> > > > > of

> > > > > > > the

> > > > > > > > antibiotics we use.

> > > > > > > >

> > > > > > > > With this knowledge, I will continue to take my minocycline

> and

> > be

> > > > > > > > incredibly pleased it helps my arthritis. If I wake up one

day

> > > next

> > > > > week

> > > > > > > > with lupus or hepatis, minocycline will be the first thing I

> > > > suspect,

> > > > > > and

> > > > > > > > I'll stop it immediately to see if the symptoms subside.

> > > > > > > >

> > > > > > > > --

> > > > > > > > Jean

> > > > > > > > jpro2@...

> > > > > > > >

> > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups

> > > > > > > >

February 24, 2003

Hi Jeff and Ellen ,

Well I must admit that is the best grouping of words I have seen in quite some

time LOL Thanks for the chuckle .

Now as to your post and some of the comments you made here I 100% can agree

with most of what you said because I lived it and experienced it . It is very

hard to base ones reaction on what others say feel and or do . Unfortunately we

with auto immune disease unless you have rheumatoid arthritis there are no real

answers . Seems in medicine the money used in clinical trials and studies all

goes to the disease that effects most people and MCTD ( what I have ) LUPUS and

others are not in this grouping . RA is the largest auto immune disease and that

and scleroderma and osteoarthritis( Privately funded ) seem to be the only

disease to date studied . So yes we ,me, you, and medical professional do not

have the answers here for you . So what would be the next step ??? Testimonial

data . There is one thing to focus on here ,First what are your alternatives ???

Are they safer ??? If you doubt this therapy works but there is such

overwhelming testimonial evidence that it works and it can be continued while

on conventional therapy drugs if needed where is the issue and concern??? When

in fact this drug may help you lessen the length of time on harsher drugs do

you not see my reasoning here ??? If you could tell me there was another

alternative that was safe and was proven effective Id say go for it . There is

not any other alternative that is safer and just about all the meds prescribed

for us do NOT have clinical trials that say they are effective either. So in my

decision making process I ruled out since rapid progression was NOT an

immediate issue why should I try harsher drugs first when they offer no

substantial data saying they work either and we DO know they could be more

harmful then the darn disease .

Many clinical trials are based on testimonial usage . If you want to wait

until they decide to study Herxhiemer reactions and flares and everything else

with this therapy that is your choice and I can respect it but Im not going to

agree with it .

I see your point, I hear you ,I have been there . Its a very hard decision to

stay on something when you just do not have the confidence it works especially

when you feel like crap taking it . Again ask yourself what does medicine have

to offer me now that can be better then this AP protocol ??? Can they prove to

you they have something that is safe that can remit this disease ??? Worst case

scenario you do both conventional and AP what do you have to lose ???

Im not trying to convince you to do anything but rather showing you how I came

to my decision making process of choosing AP and sticking with it when I was not

confident in it . Sharing this with you may help you make the right decisions in

your treatment plans what ever that may be . Today 6+ yrs on AP and thank God

for strong support from many here and locally that I was able to stay on this

med on a roller coaster ride for 2 yrs because that it when I saw the biggest

changes in subsiding symptoms etc. Im not in remission but darn close . Not

sure if Ill ever reach remission but I know one thing Ill remain on AP until I

do, unless they come up with a safe cure !!! Warm hugs I appreciate your input

Im sorry you are struggling with this , just know you are not alone most of us

had this struggle as well ,

socjog

rheumatic sorry Jeff ...................

Date: Sun, 23 Feb 2003 09:36:08 -0500

Ginger,

Likewise my ANA was normal and then increased coinciding with fevers. My

Sed Rate also increased. Both returned to normal after discontimuing the

minocin, but I do recall my Dr commenting that sometimes they do not return

to normal. Whether he knew specifically of this through a patient or he

only was aware of it, I do not recall. Regardless of how its classified or

termed, and regardless of its frequency, an autoimmune response to the

antibiotic is initiated in some cases, and if not addressed, can potentially

have long term implications.

Jeff

*******************

Hi Jeff,

Maybe what you were experiencing was effects of the minocycline attacking

the organism . Sed rates and ANAs will increase when the AP is effective

the key is a good AP dr currently using this therapy can differentiate

between a lupus like syndrome which is NOT what you described and an AP

effective reaction . Having an elevated sed rate and ANA is not a lupus

like reaction. Are you currently on any antibiotic now ?? Did you know ANAs

can just about be effected by any drug ??? The other drugs that have been

know to effect an individuals ANA didn't render a lupus like reaction either

in fact no reaction other then an elevated ANA . This is very common with

MANY of our labs . Did you know Tylenol when taken intermittently can cause

liver enzymes to be elevated .??? The list goes on!!

An auto immune response as you call it may very well be the effective

reaction of the antibiotic working on the disease . The long term

implications from the disease can have potentially long term problems if

not treated in a timely manner which has nothing to do with the minocycline

. Warm regards,

socjog

February 24, 2003

Hi Lynne,

How interesting and thanks for sharing these comments with us . I often think

we all are guinea pigs but I much rather call ourselves pioneers . We would

never have learned about minocin if people didn't try . I think this is true of

many treatments . The more that try and succeed I think that is now why AP is

recognized by the arthritis foundation and many more drs now then when I was

first diagnosed . I also do not think that medicine will EVER do clinical

trials using this drug and auto immune disease because there are far to many

variables and no 2 could be made to meet the criteria set up for most trials .

So we are it and when it is with a benign drug like mino I dont mind being a

pioneer either warm hugs,