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[QUOTE=JasmineRain] [QUOTE=Pip!]I haven't.  That's fascinating.  I thought only docs could do clinical trials.  Spelunker -

 
Seriously, I've thanked you multiple times for the idea to write a book about this.  Since this is not a clinical trial, you are being rather mean.
 
Thank you - please buy the book when it's done.
 
Pip
Pip, your buy the book theatricality is not either impressive nor is it worthy of you. You are playing the avoidance card-first, last, and foremost.

IF, big if, you care to be forthright, honest, and appropriate rather than pursuing your current avoidance and bullshipping I might consider buying your book. However, in the real world a book takes at least 18 months from conception to publisher. Frankly, I wonder, based on your elusive tactics, if you have anything worth waiting for.

WHY can you not respond to questions? Why can you not answer questions based on your statics, statics that by your own admission you have posted more than once herein? Why must you resort to turning the tables and calling me mean instead of being an upstanding, honest, and accurate poster and clarifying your stats? Truly, it is not hard, simply answer the questions and your integrity will not be in question. You integrity and veracity are in question as long as you continue to fall back on "buy the book".

Or, is you evasion and hesitancy secondary to being unable to answer that questions? Anyone want to lay odds on that?


No, Spelunker, I am not playing the avoidance card.
 
1) this is not a clinical trial - as you keep insisting it is despite being corrected multiple times
2) my patient base is people I've met on bulletin board wanting help in starting and continuing AP - I refer them to the RB, they get a doc, the doc helps them, I help with roadblocks.  Kind of like when you guys say 'up the mtx'.
3)  Monitoring has taken place up to a 3 year period - I'm awaiting updates from people I've lost touch with and have asked them if they're interested in being in a book.
4) Criteria includes dropping more of the traditional meds, lab tests when available etc, and when available, those being in clinical remission per their doctors. 
 
Now, let me ask some questions.  Anybody with a wit of common sense knows that the above is 'not going to be enough' for you.  It is 'junk science' per the 4 Horseman of the ARC.  It is ancedotal et al. 
 
Why are you insisting on pursuing this course of attack?  The fact is - I have the results, and thanks to you, maybe a book that will help others to realize they can control their own destiny and choose an option that was probably not offered to them.  Some are 'severe'.  Some have blown thru all the traditional meds and had no other options.  It should be captivating reading for those considering AP.
 
Good luck with the road you have chosen. 
 
Pip
 
Why are you insisting on pursuing this course of attack? 
 
because you've made statements of SUCCESSS... of your Peeps having 90% success..
 
c'mon Pip!!  if you are going to state that here... you should know that WE want more information......   look at how we analyze everything.... You expect sheep to just baaaaaaa to you when you speak and not expect documenting?????
 
 
 
You are rude, Babs.
 
My peeps do have a 90% success rate, 75% for RA.  If you need more info and are interested in doing AP - the Roadback has a list of doctors.
 
Since the AP detractors don't think it applies to 'severe' then I'm assuming you aren't going to pursue this.  And if you aren't going to pursue this...then your above post shows more 'attack' and less interest in learning.
 
Pip
 
 
I'm not rude, Pip..   I'm direct...
 
I'm also a realist..
 
My peeps do have a 90% success rate, 75% for RA. 
 
you aren't a realist..
 
or you'd "show us the money"
 
 
[quote=Pip!]No, Spelunker, I am not playing the avoidance card.
 
1) this is not a clinical trial - as you keep insisting it is despite being corrected multiple times[/quote]
You are absolutely mistaken. I have not insisted on calling your stats a clinical trial, I have merely questioned your stats and then questioned the reason your refused to answer what, as you have just proven, are simple questions and easy to answer. You have avoided answer what were simple and straightforward questions based on what you had posted. Full stop.
[quote]2) my patient base is people I've met on bulletin board wanting help in starting and continuing AP - I refer them to the RB, they get a doc, the doc helps them, I help with roadblocks.  Kind of like when you guys say 'up the mtx'.[/quote]
That IS not an answer, now more than your “I've helped people from all over the world.  Isn't the Internet wonderful?” an adequate and appropriate response. Are you speaking of twenty people or 2000? Finite numbers make a difference.
[quote]3)  Monitoring has taken place up to a 3 year period - I'm awaiting updates from people I've lost touch with and have asked them if they're interested in being in a book.[/quote]
Now, how hard was that? Yet you have been avoiding answering for what, four weeks now?
[quote]4) Criteria includes dropping more of the traditional meds, lab tests when available etc, and when available, those being in clinical remission per their doctors. [/quote]
Again, I have to wonder why that was so hard for you to say…
 
[quote]Now, let me ask some questions.  Anybody with a wit of common sense knows that the above is 'not going to be enough' for you.  It is 'junk science' per the 4 Horseman of the ARC.  It is ancedotal et al. [/quote]
And see, once again your powers of prophecy are far wide of the mark. I am quite happy with your anecdotal response. My questions all along have been based solely and completely on what your posted about your peeps. I was not looking for anything but honest responses to very simple questions. I remain bemused by your lack of response to previous postings.
 
[quote]Why are you insisting on pursuing this course of attack?[/quote]
Attack? Once again Pip, I have not attacked you.  I have simply requested clarification of statistics that you freely posted. We could have both been spared all this if you would have just answered forthrightly and honestly rather than being elusive and avoiding the questions. In this life veracity is important, and your continued avoidance damaged your veracity.
[quote]  The fact is - I have the results, and thanks to you, maybe a book that will help others to realize they can control their own destiny and choose an option that was probably not offered to them.  Some are 'severe'.  Some have blown thru all the traditional meds and had no other options.  It should be captivating reading for those considering AP.[/quote]
And, conversely, for those of us who have “blown thru” AP and ended up being ‘severe'. Thanks for answering my questions.

Cheers, Shug
I think your answer reinforces what I posted - thank you again for that.
 
Pip
[QUOTE=Pip!]I think your answer reinforces what I posted - thank you again for that. The entire post reinforces an attack mentality.  It helps us APers.  So thank you.
 
I do have another question - did you actually say AP made you severe? 
Pip, you are entitled to see what you want wherever you want to see it. If you think I am attacking you then I am. Nothing, absolutely nothing, I can say will shed the least bit of light into your mindset. You want to be attacked, then be attached. If you are absolutely unable to tell the difference between being questioned and being attacked you are to be pitied. Pitied.

Yes, I most certainly did say that my disease progressed from inflammatory arthritis, unspecified, to sever RA with radiological evidence of erosion while on AP. However, I did not say that AP make me severe, and I quote, "... “blown thru” AP and ended up being ‘severe'." [quote=Spelunker]
Like others, I was offered a choice of therapies on diagnosis in 2004. I did the research and opted for IV to PO AP and diet typing. Erosions in my wrists, thumbs, right index finger and left ring finger appeared at ten months along with “anemia of chronic illness” and RA induced neuropathy. I chose to continue the therapy in the hopes of reaching a plateau where inflammation, pain, and damage where controlled by AP and diet. At 18 months the erosions had become worse and several other joints where involved.

I never experienced the herx effect described in the literature.  I simple went from one flare to the next with my sed rate climbing higher and higher and in the process was diagnosed with secondary Sjögren's Syndrome with both pterygium and pinguecula. At 18 months, X-rays convinced me that it was time to try something else. I started on MTX and did a gradually increase to 20 mg (subcutaneously). Plaquenil was added at about the 10th week to extend the duration of effectiveness, and recently Arava as my white blood cell count had dropped and MTX was reduced to 15 mg.

Except for some limitations from the erosions, especially in my ankles and wrists, I am doing very well both subjectively and clinically.[/quote]

I hope you also list all the people that AP did not help.  after I listed a few names you made excuses for them all and the most recent was Dalminka SP
Boy did you guys turn on her.
Ignorance is Bliss....ROFLMAO about the book, indeed,   AP FOR DUMMIES

Pip

Dalmatinka quit after her first herx.  That's not an APer.  That's less than those who do MTX 3 months and quit.
 
Pip
[QUOTE=Pip!]

Your erosions were non-existant starting AP per x-rays?

Pip

[/QUOTE]

That is correct.
she was a non-responder because of allergic reaction...in any clincal trail you cant pick and chose just responders...hello anyone home [QUOTE=Pip!]Dalmatinka quit after her first herx.  That's not an APer.  That's less than those who do MTX 3 months and quit. [QUOTE=Spelunker] [QUOTE=Pip!]Dalmatinka quit after her first herx.  That's not an APer.  That's less than those who do MTX 3 months and quit.
 
Pip
[/QUOTE]

According to concurrent pathophysiological markers I did not herx and I stuck it out for 18 months. I am supposing you have a purpose in bringing someone else and their AP try into this conversation...

ETA: ah, I am beginning to see how Dalmatinka came into the conversation and as Mabus has pointed out she quite specifically stated that her reaction was one of an allergic nature.
[/QUOTE]
 
Yes Shug that was exactly the case, a head to toe rash, I looked like a burn victim, went to the hospital daily for infusions to flush the antibiotics out of my system.  But this like many other things is what Pip chooses to ignore.  She is the almighty AP Queen who knows all and how dare we question her?
 
And yes Pip I am sure you will mention this I did say I would not have anything more to say about your precious AP but since MY name was mentioned and you again gave FALSE information I feel the need to defend myself.
 
 

Pip - how long have you been on AP?   For some reason I thought you'd only been dx a few years and not on AP right away, so how are you able to monitor people for up to three years?    I'm not on one side or the other - thrilled if people feel better no matter what the treatment, so don't mean to raise any issue, but the timing just doesn't seem right.  If I'm off base, I apologize for the question. 

I don't think Pip is around right now, but I'm sure she won't mind answering.  What I know - my daughter started in 8/06, and Pip started around when she did - but I don't remember exactly month-wise. From the APers thread - first post date, she says '11+ months":
Topic: Requesting New APer’s...
    Posted: 08�August�2007 at 12:25pm

post their progress here.

AP is really a hard protocol to start.  There is a lot of worry and fear that it's not working or questions if this or that would help.  But because of the previously aforementioned feeling 'jumped on' many people starting AP do not feel comfortable saying any of the negatives as they struggle to get the disease into remission. 

I really lucked out...being newly diagnosed I mostly coasted into feeling great.  I didn't have a lot to 'undo' if that makes sense.  But some of people just starting AP have been on a lot of the traditional drugs and may have a harder time than I.  Here they could get support as well as light the way for others starting on the road back to health.

We APers have never said it was an easy road...but somebody somewhere has to start posting the ups and downs of the treatment plan.

Maybe they could post their med, the dosage, and the time on AP at the top of the post so everybody can see what's going on.  Like:

Pip AP 11+ months, Mino 200 mgs MWF


[/QUOTE]
 
Hello???  Anybody home???
 
 

MELODY PETERSEN: You know, it's gone so far that some independent scientists are starting to view our medical literature as propaganda. I've learned that there are so many different ways for a study to be designed to get the data that will help you sell your drug. If you want to make it look more powerful than an older drug on the market, you give the volunteers in your trial the older drug at a dose that is too low to really help them so your drug looks better. If you want your drug to look safer than an older drug you boost the dose up of the older drug in the volunteers so they have more side effects. If you have one study that showed it worked, and one study showed it didn't, you publish the first study over and over again with the help of your advertising agency. And you don't publish the second one.

BILL MOYERS: Are we being deliberately misled?

MELODY PETERSEN: Yes.

BILL MOYERS: Intentionally?

MELODY PETERSEN: Yes, looking at documents from inside the drug companies, yes. I would say we're being misled deliberately.

http://www.pbs.org/moyers/journal/05162008/transcript2.html
[QUOTE=Dalmatinka][QUOTE=Spelunker] [QUOTE=Pip!]Dalmatinka quit after her first herx.  That's not an APer.  That's less than those who do MTX 3 months and quit.
 
Pip
[/QUOTE]

According to concurrent pathophysiological markers I did not herx and I stuck it out for 18 months. I am supposing you have a purpose in bringing someone else and their AP try into this conversation...

ETA: ah, I am beginning to see how Dalmatinka came into the conversation and as Mabus has pointed out she quite specifically stated that her reaction was one of an allergic nature.
[/QUOTE]
 
Yes Shug that was exactly the case, a head to toe rash, I looked like a burn victim, went to the hospital daily for infusions to flush the antibiotics out of my system.  But this like many other things is what Pip chooses to ignore.  She is the almighty AP Queen who knows all and how dare we question her?
 
And yes Pip I am sure you will mention this I did say I would not have anything more to say about your precious AP but since MY name was mentioned and you again gave FALSE information I feel the need to defend myself.
 
 
[/QUOTE]
 
Mabus brought you into this conversation, not I.
 
Also, this new info is NOT in any of the emails you sent me.  You just quit and were still considering starting back up.  Thank goodness you have the hospital reports to back up what you're saying.
 
Pip
[QUOTE=CathyMN]

Pip - how long have you been on AP?   For some reason I thought you'd only been dx a few years and not on AP right away, so how are you able to monitor people for up to three years?    I'm not on one side or the other - thrilled if people feel better no matter what the treatment, so don't mean to raise any issue, but the timing just doesn't seem right.  If I'm off base, I apologize for the question. 

[/QUOTE]
 
Not off base at all - actually a great question.   You are correct - the dates aren't correct.
 
I was diagnosed March/06 and started AP in 8/06.  I started sending other people to the RB after I found them and before I was able to find a doc in MI.  I'd like to point out I NEVER found a doc in MI until I left the state, now we have 3.  The first person that started AP from discussions we had, started AP in 9 or 10/06.  Which would make it around 2 years 8 months.  Correct?
[QUOTE=Suzanne]From the APers thread - first post date, she says '11+ months":
Topic: Requesting New APer’s...
    Posted: 08�August�2007 at 12:25pm

post their progress here.

AP is really a hard protocol to start.  There is a lot of worry and fear that it's not working or questions if this or that would help.  But because of the previously aforementioned feeling 'jumped on' many people starting AP do not feel comfortable saying any of the negatives as they struggle to get the disease into remission. 

I really lucked out...being newly diagnosed I mostly coasted into feeling great.  I didn't have a lot to 'undo' if that makes sense.  But some of people just starting AP have been on a lot of the traditional drugs and may have a harder time than I.  Here they could get support as well as light the way for others starting on the road back to health.

We APers have never said it was an easy road...but somebody somewhere has to start posting the ups and downs of the treatment plan.

Maybe they could post their med, the dosage, and the time on AP at the top of the post so everybody can see what's going on.  Like:

Pip AP 11+ months, Mino 200 mgs MWF


[/QUOTE]
 
My actual AP start date is 8/25/06.
 
Pip
Stephen -
 
Nobody says she had to continue - what I am saying is what she said to me in email is decidedly different than what she is posting here. 
 
Dalmatinka -
 
Would you mind if I posted your personal PMs?  I will, of course, delete any personal information.
 
Pip
 
Edited to change email to PM.
 
Pip!2009-04-15 19:16:11

have every PM ever written to you don't you.......

and who keeps stuff like that???? [QUOTE=Pip!]I was diagnosed March/06 and started AP in 8/06.  I started sending other people to the RB after I found them and before I was able to find a doc in MI.  I'd like to point out I NEVER found a doc in MI until I left the state, now we have 3.  The first person that started AP from discussions we had, started AP in 9 or 10/06.  Which would make it around 2 years 8 months.  Correct?[/QUOTE]
And you began setting population parameters, criteria, and keeping stats before your were on AP?

Let's see, it is now mid-April 2009, so September or October of 2006 would be 2 years and 7 months/2 years 6 months depending on the date.

Accuracy with reporting is important, even with anecdotal evidence, especially when reporting success rates. No, that is not an attack, merely an observation.
[QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Spelunker] [QUOTE=Pip!]Dalmatinka quit after her first herx.  That's not an APer.  That's less than those who do MTX 3 months and quit.
 
Pip
[/QUOTE]

According to concurrent pathophysiological markers I did not herx and I stuck it out for 18 months. I am supposing you have a purpose in bringing someone else and their AP try into this conversation...

ETA: ah, I am beginning to see how Dalmatinka came into the conversation and as Mabus has pointed out she quite specifically stated that her reaction was one of an allergic nature.
[/QUOTE]
 
Yes Shug that was exactly the case, a head to toe rash, I looked like a burn victim, went to the hospital daily for infusions to flush the antibiotics out of my system.  But this like many other things is what Pip chooses to ignore.  She is the almighty AP Queen who knows all and how dare we question her?
 
And yes Pip I am sure you will mention this I did say I would not have anything more to say about your precious AP but since MY name was mentioned and you again gave FALSE information I feel the need to defend myself.
 
 
[/QUOTE]
 
Mabus brought you into this conversation, not I.
 
Also, this new info is NOT in any of the emails you sent me.  You just quit and were still considering starting back up.  Thank goodness you have the hospital reports to back up what you're saying.
 
Pip
[/QUOTE]
 
What are you talking about?  The last time I pmed you was months ago when I was starting the therapy.  I never just quit, because I am not a quitter.  I would have stuck out pain and swelling if it meant I would get better.  But a head to toe rash which made me look like a burn victim, no, that means that the drug did not agree with my body.
 
When I was first diagnosed I started off with gold injections.  I was taking them for six months and feeling better when all of a sudden I broke out in a terrible rash.  My doctor took me off the gold injections, he said it was an indicator that the drug was toxic for me. It just took time for enough of the drug to build up in my body to show this. 
 
I tend to listen to my doctors and not someone on a message board and always discuss everything with her because that is the way to do it.
 
I also have RA and not PRA and have been battling this disease for almost twenty years.  How long have you had PRA?  I dont think you are qualified to tell me what I should and shouldnt do.  And yes I do have all of my hospital reports, here in Croatia the patient has copies of everything that is in the doctors file.
 
You know what lets just agree to disagree and end this.  Frankly I have better things to do with my time than endlessly analyse the pros and cons of AP and defend myself because it did not work for me and in your eyes I am a quitter.
 
Best regards,
 
Maria
[QUOTE=Pip!]Stephen -
 
Nobody says she had to continue - what I am saying is what she said to me in email is decidedly different than what she is posting here. 
 
Dalmatinka -
 
Would you mind if I posted your personal PMs?  I will, of course, delete any personal information.
 
Pip
 
Edited to change email to PM.
 
[/QUOTE]
 
Yes in fact I would mind although I have nothing to hide.  If I didnt mention I had an allergic reaction it is probably because I was in pain because it was very painful.  And I also do not have to prove anything to you or anyone else.  Perhaps you would like my doctor to give you a call seeing as you are a fellow MD?
I just went back and read my PMs and yes I did say I was having massive pain and swelling and had stopped and was going to start up again at a MWF schedule which I did do.  After one week of this schedule I had the allergic reaction and was taken off the drug by my doctor.  So heres to your trying to prove me a liar which I definately am not.  I am one of the most honest people you could ever meet.  That you choose to call me a liar and belittle me is not my problem.  It is definately yours.

Pip, great news, you can up your success rate![QUOTE=justsaynoemore]Pip, great news, you can up your success rate![/QUOTE]

 
At what?
[QUOTE=justsaynoemore]Pip, great news, you can up your success rate![/QUOTE]
 
And who is her latest patient to succeed?  If you are referring to me, surely you jest!
[QUOTE=Dalmatinka][QUOTE=justsaynoemore]Pip, great news, you can up your success rate![/QUOTE]
 
And who is her latest patient to succeed?  If you are referring to me, surely you jest!
[/QUOTE]
 
nah... she's attempting to be a smart ass eluding to the fact that YOU, a failure in their eyes, is not one of her patients... so her "successes" are higher based on Less "failures"
 
totally screwed up thinking..... but there's no surprise there 

This is going to be hard to believe but, this is a true story. Before I was to get my first rituxin infusion, I had to stop my enbrel for about a month prior to infusion. The rituxin seemed to take a long time also so there was 2-3 months of no meds and my inflammation and swelling got worse daily. I took pictures to show my inflammation and swelling and made it clear that it was during a period of no meds. Pip saved my pictures and used them telling people that my pictures showed the damaging results of enbrel use even though she was well aware of the circumstances. How low and deceitful is that? Who wants to try and defend that? What kind of a sick mind would do such a thing? Think about that. There is something very wrong with Pip.

LEV

[QUOTE=babs10][QUOTE=Dalmatinka][QUOTE=justsaynoemore]Pip, great news, you can up your success rate![/QUOTE]
 
And who is her latest patient to succeed?  If you are referring to me, surely you jest!
[/QUOTE]
 
nah... she's attempting to be a smart ass eluding to the fact that YOU, a failure in their eyes, is not one of her patients... so her "successes" are higher based on Less "failures"
 
totally screwed up thinking..... but there's no surprise there  [/QUOTE]
 
and by ignoring the allergic reaction, the failure is now her own fault because she couldn't deal with a herx because as we know all failures of AP are the patients fault not the meds
buckeye2009-04-16 08:36:42 [QUOTE=justsaynoemore]Pip, great news, you can up your success rate![/QUOTE]
Your success rate...your. At least peripherally, success rates should take into account patient response to the medication rather than be dependent on and dependent from the individual collecting and correlating the statistics.

While I can see the entertainment value of "your success rate" it is a disappointment when facts are hidden by the hyperbole. From my point of view "your success rate" would be better serves by disclosure re: the total number of patients being accessed, how long they had been followed en masse and individually, etc., etc..

Dalmatinka, you have my most sincere apologies that my search for understanding of the statistics slid into a personal confrontation and that you were compelled to again act as your own defense counsel.
[QUOTE=buckeye] [QUOTE=Dalmatinka][QUOTE=Pip!]Stephen -
 
Nobody says she had to continue - what I am saying is what she said to me in email is decidedly different than what she is posting here. 
 
Dalmatinka -
 
Would you mind if I posted your personal PMs?  I will, of course, delete any personal information.
 
Pip
 
Edited to change email to PM.
 
[/QUOTE]
 
Yes in fact I would mind although I have nothing to hide.  If I didnt mention I had an allergic reaction it is probably because I was in pain because it was very painful.  And I also do not have to prove anything to you or anyone else.  Perhaps you would like my doctor to give you a call seeing as you are a fellow MD?
[/QUOTE]
 
I just find it interesting the difference between what you said to me and what you're saying now.
[QUOTE=Dalmatinka][QUOTE=Pip!][QUOTE=Dalmatinka][QUOTE=Spelunker] [QUOTE=Pip!]Dalmatinka quit after her first herx.  That's not an APer.  That's less than those who do MTX 3 months and quit.
 
Pip
[/QUOTE]

According to concurrent pathophysiological markers I did not herx and I stuck it out for 18 months. I am supposing you have a purpose in bringing someone else and their AP try into this conversation...

ETA: ah, I am beginning to see how Dalmatinka came into the conversation and as Mabus has pointed out she quite specifically stated that her reaction was one of an allergic nature.
[/QUOTE]
 
Yes Shug that was exactly the case, a head to toe rash, I looked like a burn victim, went to the hospital daily for infusions to flush the antibiotics out of my system.  But this like many other things is what Pip chooses to ignore.  She is the almighty AP Queen who knows all and how dare we question her?
 
And yes Pip I am sure you will mention this I did say I would not have anything more to say about your precious AP but since MY name was mentioned and you again gave FALSE information I feel the need to defend myself.
 
 
[/QUOTE]
 
Mabus brought you into this conversation, not I.
 
Also, this new info is NOT in any of the emails you sent me.  You just quit and were still considering starting back up.  Thank goodness you have the hospital reports to back up what you're saying.
 
Pip
[/QUOTE]
 
What are you talking about?  The last time I pmed you was months ago when I was starting the therapy.  I never just quit, because I am not a quitter.  I would have stuck out pain and swelling if it meant I would get better.  But a head to toe rash which made me look like a burn victim, no, that means that the drug did not agree with my body.
 
When I was first diagnosed I started off with gold injections.  I was taking them for six months and feeling better when all of a sudden I broke out in a terrible rash.  My doctor took me off the gold injections, he said it was an indicator that the drug was toxic for me. It just took time for enough of the drug to build up in my body to show this. 
 
I tend to listen to my doctors and not someone on a message board and always discuss everything with her because that is the way to do it.
 
I also have RA and not PRA and have been battling this disease for almost twenty years.  How long have you had PRA?  I dont think you are qualified to tell me what I should and shouldnt do.  And yes I do have all of my hospital reports, here in Croatia the patient has copies of everything that is in the doctors file.
 
You know what lets just agree to disagree and end this.  Frankly I have better things to do with my time than endlessly analyse the pros and cons of AP and defend myself because it did not work for me and in your eyes I am a quitter.
 
Best regards,
 
Maria
[/QUOTE]
 
I'm glad you have the hospital reports.
[QUOTE=Dalmatinka]I just went back and read my PMs and yes I did say I was having massive pain and swelling and had stopped and was going to start up again at a MWF schedule which I did do.  After one week of this schedule I had the allergic reaction and was taken off the drug by my doctor.  So heres to your trying to prove me a liar which I definately am not.  I am one of the most honest people you could ever meet.  That you choose to call me a liar and belittle me is not my problem.  It is definately yours.[/QUOTE]
 
Again, you use the word 'liar'.  I think the PM will show why I'd have a problem with your assertions now. 
pit dog pip, can't you leave maria alone, you are always trying to discredit people who did not respond to ap..give it a brake and seek that help you need you seem to be imploding.Again the entertainment factor awakens. Yes, I AM pulling from another topic to include in this one on disclosure, so what?

[QUOTE=Pip!]All -
 
I think this is the crux of the matter, isn't it.  No, this thread is not going to close.  Ever.  If you guys would have let me finish what I was doing and move peacefully back to AF, this thread would have died a natural death.  [/quote]

As an adult, no one should have prevented you from finishing and then moving on. To admit that anyone, but especially a group of WWW posters has so much influence in and on your actions/reactions is, under any circumstances, an admission that you have limited self-control.
 
[quote]But you didn't and you manufactured rants about 'clinical trials' and trolls who appear out of nowhere to rebut every 'flaw' in your previous attempts at rebuttals which were dismal failures.  I mean, really, Lev is an attack dog, but he's no rocket scientist and was mocked repeatedly about his inability to keep a simple fact in his mind.[/quote]
Why do you resort to name calling, it is not an attractive trait and it lessens your impact in every area.

Having been tagged with the troll title I am qualified to respond to the first part of this accusation: can you please provide a breakdown of how many members of AI appeared out of nowhere? I admit I did. I read an article in my hand therapists office that was about online discussion groups, I jotted down the url, and investigated. In doing a bit of reading before joining, I was struck by the statistical success rate and I joined in an attempt to gain more information. What I gained was the status of troll. I said that I would wear that status with pride; if I am going to have the name I am gonna play the game.

[quote]At least one person is leaving this board to start another one that offers support.  That person thinks people really hate each other.  APers don't hate you guys, but, something about your chosen path to healing makes you foam at the mouth about ours.  And it shows.[/quote]
“Foam at the mouth”, now that is a statement crafted to bring tranquility and sisterhood to this board! Peacemakers unite. 
 
[quote]So, here goes - we are here to stay.  This thread is here to stay. 
 
You have 2 choices -
 
1) Let it alone or ask questions that are serious and meant to further knowledge.  We have continually answered the same questions over and over for newbies, we will answer them again, provided they are intended for education purposes and to not badger or provoke APers.  I think all of you can easily make the distinction.[/quote]
Serious questions, say eh? BUT only if you are a newbie. OK, I have that distinction. !LOL!
 
[quote]2) Keep doing what you're doing.  I believe that the lurkers and the minimal posters can see the attack dog mentality of the few of you and science has proven that people are hardwired to dislike bullies.  Every time you start this, you gain us more sympathy, and if sympathy gets somebody to try AP, so be it.[/quote]
I absolutely agree that anyone reading through this morass will fully and completely understand what is taking place on the AP thread.
 
[quote]What's happening with the book is my concern and the people who decide to participate.  If you don't like it - don't buy the book.  Simple.[/quote]
If it is that simple great, however when you post claims that are extraordinary you should expect to be questioned and be wholly prepared to answer in a meaningful way rather than us “the book” as both defense and prosecution.
 
[quote]What's happening with trolls is everybody's concern.  If, as some suspect, that trolls have been manufactured to 'rebut' and 'prove a point' or heaven forbid 'bolster an argument' then we will eventually know that too.[/quote]
You just cannot move beyond the troll point can you? It appears as if it is impossible for you to accept that not everyone who asks questions, rebuts statements, and argues rationally and reasonably in a troll.

Speaking for myself, I have not been “manufactured” but I will rebut, question, and even be quarrelsome in MY quest to advance my understanding of RA and its various modes of treatment.

[quote=justsaynoemore] Suzanne - the real question is why would a decent human being who isn't taking AP be posting on this thread. [/quote]
However, that begs the question of who is real in this internet realm. And as most of us, or at least many of us, do not conform to nor observe conventional behaviours and action then most of us, or at least many of us, are not decent…also, remember that ‘decent’ can be, and is defined as sufficient. I am quite decent therein.

Insults aside, it seems not only exclusionary but elitist to decree that in order to be a decent human being one must only post in certain topics. That is a stretch.

[QUOTE=Suzanne]It does seem to be an unusual choice for a screename[/QUOTE]
However, one of my favourite guitarists is also Mabus . However, there are days when the only exercise I get is jumping to conclusion.

In closing, once again, I am always thrilled to hear of anyone’s success, and to imply that only APers have that capacity is not only insulting, the implication is contemptible.

Cheers, Shug [QUOTE=Spelunker]
 


[QUOTE=Suzanne]It does seem to be an unusual choice for a screename[/QUOTE]
However, one of my favourite guitarists is also Mabus . However, there are days when the only exercise I get is jumping to conclusion.

[/QUOTE]

I would consider it unusual if Joe had chosen his last name, no?

I had been wondering about the origin of the screename 'mabus'. I was thinking maybe it had to do with Mabthera in the US, but that was denied.  But maybe it is just initials, plus country.  Mabusa would work, right?  I hope you enjoyed your exercise today!

 
[QUOTE=Suzanne]I hope you enjoyed your exercise today![/QUOTE]
If I had to guess, not merely as much as you did by delivering that zinger, say eh?
[QUOTE=Spelunker] [QUOTE=Suzanne]I hope you enjoyed your exercise today![/QUOTE]
If I had to guess, not merely as much as you did by delivering that zinger, say eh?
[/QUOTE]

I didn't enjoy much of anything on the board today.  I like to learn and/or laugh a little.  Not much of either going on these days, unfortunately. 
[QUOTE=Suzanne] [QUOTE=Spelunker] [QUOTE=Suzanne]I hope you enjoyed your exercise today![/QUOTE]
If I had to guess, not merely as much as you did by delivering that zinger, say eh?
[/QUOTE]

I didn't enjoy much of anything on the board today.  I like to learn and/or laugh a little.  Not much of either going on these days, unfortunately. 
[/QUOTE]
 
You get back in life exactly what you give......
[QUOTE=Lynn49][QUOTE=Suzanne] [QUOTE=Spelunker] [QUOTE=Suzanne]I hope you enjoyed your exercise today![/QUOTE]
If I had to guess, not merely as much as you did by delivering that zinger, say eh?
[/QUOTE]

I didn't enjoy much of anything on the board today.  I like to learn and/or laugh a little.  Not much of either going on these days, unfortunately. 
[/QUOTE] oh suzanne you have way too much time on your hands to keep trying to ANALYZE everything, dont you have a family, job or something..... [QUOTE=mabus]oh suzanne you have way too much time on your hands to keep trying to ANALYZE everything, dont you have a family, job or something.....[/QUOTE]

All of the above.  But everybody is getting home late tonight.

I hope you recall that you mentioned some older history that I was familiar with, and I tried to ask if you had posted under another name (lke maybe I already 'knew' you), but you declined to answer, which is fine, but that just made me think a bit.


you are getting just like pip, you never enquired if you knew me, you started out with the date joined and started in about join date and knowing about past post...i did answer you about how long i had read boards and the wonderful feature of ACHIVES

AS JSNM ALWAYS SCREAMS, QUIT STALKING ME [QUOTE=mabus]

.i did answer you about how long i had read boards and the wonderful feature of ACHIVES

[QUOTE=mabus]

you are getting just like pip, you never enquired if you knew me, you started out with the date joined and started in about join date and knowing about past post...i did answer you about how long i had read boards and the wonderful feature of ACHIVES

AS JSNM ALWAYS SCREAMS, QUIT STALKING ME[/QUOTE]
 
This is what happens here all the time.  It has been insinuated many times that I'm not really doing as well as I say, that I post under other names and that I'm in some way connected to big pharm and of course, the stalking gambit!
 
All of those things are untrue but nevertheless...they keep getting repeated..Ad nauseum
 
Edited to add...I forgot the whole Rituxan users suffer from brain damage....
edited to say yeah and remember they thought they knew what medication i was on and ended up insulting alot of people
mabus2009-04-16 14:35:24yes.. mabus... that was when tempers began to flare for me this time.  overboard and uncalled for, IMO [QUOTE=mabus]

my opinion has certainly changed with a few that seem to have an ax to grind Please!  School is over for the day.....Eighth graders, you should know better! [QUOTE=Suzanne] [QUOTE=mabus]

my opinion has certainly changed with a few that seem to have an ax to grind

edited to say yeah and remember they thought they knew what medication i was on and ended up insulting alot of people
[/QUOTE]

Please do not lump me in with that.  A one-sentence question was asked, and I replied I was wondering, too.  After that, it took a life of its own.  When I said I was wondering, I had no idea that could be considered insulting or people would say they needed to defend someone, who was asked what med they are on.  I've never seen that happen before.


[/QUOTE]
 
excuse me? It was obvious that they were insinuating that a certain med causes brain fog... not like they haven't done that before.
You cannot be on this forum almost daily and not get wind of the meanings behind the innuendo that flies.
yet, you claim to have gotten the bird reference?
If you're going to say you didn't know what was going on...  you'll have to take the 5th.
 
[QUOTE=babs10][QUOTE=Suzanne] [QUOTE=mabus]

my opinion has certainly changed with a few that seem to have an ax to grind [/QUOTE] [QUOTE=mabus]well suzanne your post today have certainly been out of character and i am wondering why the attacks..we all understand your alliance with pip that is clear but why the username bs and telling me to change my name. i dont see you questioning say teedoff's name and the number of her post.  if you are the score keeper around here be nice

HOW EXACTLY DOES IT NOT SUIT ME????? YOU DON'T EVEN KNOW ME....

 

1. rule # 1 all posters must explain their screenname to suzanne

2. Must change screenname if it doesn't suit you

and you don't think this drivel is petty, suzanne and may i remind you that you started the attack and then chimed in on my medication...playing innocent

[QUOTE=mabus]there are alot of unusual names here, if it is my first or last name or my initials, who CARES

 

[/QUOTE]

No, I don't know you, but I don't think of you as...you know....so that is why, to me, it no longer suits you.

The rest I didn't really follow and it's time to log off for the day, but I'm sincerely sorry for upsetting you.
[QUOTE=mabus]

my opinion has certainly changed with a few that seem to have an ax to grind

edited to say yeah and remember they thought they knew what medication i was on and ended up insulting alot of people
[/QUOTE]
 
oh..I don't think it's axes to grind,mabus..........I think it's "smack downs" isn't it?
Isn't that what PIP calls what she does to non APers here??
 
yeah........smack this.
[QUOTE=mabus]well suzanne your post today have certainly been out of character and i am wondering why the attacks..we all understand your alliance with pip that is clear but why the username bs and telling me to change my name. i dont see you questioning say teedoff's name and the number of her post.  if you are the score keeper around here be nice[/QUOTE]
 
Even though Susanne has answered your question I will refresh your memory.  The name comes from golf - Tee Off.  I have answered this question many times.  As to the number of posts, I originally came here with polymyalgia and posted on that board and only when I needed to.  I lurked on the RA board at that time and after a year of lurking felt I new everyone pretty well.  Was I mistaken.  Things have changed again so ended up posting here.
 
I find it so pathetic that (if you go back) this whole thing started when I thanked Susanne for posting that url and all of a sudden these two snotty posts were made and someone else figured she had to stick her nose in and as usual the wolf pack was off and running.  It's like who can say the cruelest things and get the happy faces from the peanut gallery.    Oh, and by the way, someone pmd me and told me what your stupid remark was about and then Lyn, per usual, had to get her two bits in.  I had a real good laugh when I found out what you bunch were talking about.  Stupid is as stupid does.  I don't even think they are this childish on the playground.
 
Look again as to who started  this attack and your question will be answered. 
 
I agree GG, school is out for the day.
TeedOff2009-04-16 17:27:28so.... what did that remark mean?[QUOTE=babs10]so.... what did that remark mean?[/QUOTE]
 
 
What remark?  I made several.
[QUOTE=TeedOff][QUOTE=babs10]so.... what did that remark mean?[/QUOTE]
 
 
What remark?  I made several.
[/QUOTE]
 
 
Pat
TeedOff2009-04-16 20:03:05

me thinks you protrest too much

your writing style and tone does match your user name

have a great day[QUOTE=mabus]

me thinks you protrest too much

your writing style and tone does match your user name

have a great day[/QUOTE]

 
Is that the best you can come up with in defense of your rediculous remark? I am really impressed that you have mental telepathy and are able to hear what tone I am using.  My user name is a lot closer to me than yours is because I am off to the golf course.
Don't knock yourself out.
TeedOff2009-04-17 08:28:41A marked lack of self-control coupled with irony has breed a miasma of double standards that permeates not only this thread but others as well.

Yes, I did take the initiate and assumed an offensive stance. I undertook the unforgivable ‘attach’ of asking questions, and when those questions were dismissed I asked again; then again. Mea culpa.  I ask questions and expect reasonable answers. I do not gladly accept evasion, avoidance, nor blithesome responses. Mea culpa.  I am fully capable of seeing, and understanding, the dynamics of this discussion forum. Mea culpa. I do not understand the mindset that sees asking questions, seeking clarification, and looking for understanding of what has been publicly stated to be an attack. Mea culpa.

I have been judged and found guilty. Mea culpa. I purposefully and deliberately respond to posts that intrigue me, pique me, stir my curiosity, seem to have an agenda, or that may hold a clue in how/why/where to understand and treat RA. Mea culpa. In my defense I have answered every question put to me with the exception of disclosing my yearly income; I have not been evasive, I have not avoided confrontation, nor have I been dismissive of anyone. Mea culpa.

Best wishes, Shug [QUOTE=Spelunker]A marked lack of self-control coupled with irony has breed a miasma of double standards that permeates not only this thread but others as well.

Yes, I did take the initiate and assumed an offensive stance. I undertook the unforgivable ‘attach’ of asking questions, and when those questions were dismissed I asked again; then again. Mea culpa.  I ask questions and expect reasonable answers. I do not gladly accept evasion, avoidance, nor blithesome responses. Mea culpa.  I am fully capable of seeing, and understanding, the dynamics of this discussion forum. Mea culpa. I do not understand the mindset that sees asking questions, seeking clarification, and looking for understanding of what has been publicly stated to be an attack. Mea culpa.

I have been judged and found guilty. Mea culpa. I purposefully and deliberately respond to posts that intrigue me, pique me, stir my curiosity, seem to have an agenda, or that may hold a clue in how/why/where to understand and treat RA. Mea culpa. In my defense I have answered every question put to me with the exception of disclosing my yearly income; I have not been evasive, I have not avoided confrontation, nor have I been dismissive of anyone. Mea culpa.

Best wishes, Shug [/QUOTE]
 
I've always believed that to disagree does not mean it's an attack – unless you are so insecure in your own opinions that you cannot bear anyone thinking differently than you do.....
 
Nice post Shug
 
[QUOTE=Lynn49][QUOTE=Spelunker]A marked lack of self-control coupled with irony has breed a miasma of double standards that permeates not only this thread but others as well.

Yes, I did take the initiate and assumed an offensive stance. I undertook the unforgivable ‘attach’ of asking questions, and when those questions were dismissed I asked again; then again. Mea culpa.  I ask questions and expect reasonable answers. I do not gladly accept evasion, avoidance, nor blithesome responses. Mea culpa.  I am fully capable of seeing, and understanding, the dynamics of this discussion forum. Mea culpa. I do not understand the mindset that sees asking questions, seeking clarification, and looking for understanding of what has been publicly stated to be an attack. Mea culpa.

I have been judged and found guilty. Mea culpa. I purposefully and deliberately respond to posts that intrigue me, pique me, stir my curiosity, seem to have an agenda, or that may hold a clue in how/why/where to understand and treat RA. Mea culpa. In my defense I have answered every question put to me with the exception of disclosing my yearly income; I have not been evasive, I have not avoided confrontation, nor have I been dismissive of anyone. Mea culpa.

Best wishes, Shug [/QUOTE] Bringing this topic forward so that Pip! can refresh her memory re: how long she has followed her peeps, her lack of response re: how many she is following, and my willingness to accept, even appreciate anecdotal evidence...

[QUOTE=Spelunker]A marked lack of self-control coupled with irony has breed a miasma of double standards that permeates not only this thread but others as well.

Yes, I did take the initiate and assumed an offensive stance. I undertook the unforgivable ‘attach’ of asking questions, and when those questions were dismissed I asked again; then again. Mea culpa.  I ask questions and expect reasonable answers. I do not gladly accept evasion, avoidance, nor blithesome responses. Mea culpa.  I am fully capable of seeing, and understanding, the dynamics of this discussion forum. Mea culpa. I do not understand the mindset that sees asking questions, seeking clarification, and looking for understanding of what has been publicly stated to be an attack. Mea culpa.

I have been judged and found guilty. Mea culpa. I purposefully and deliberately respond to posts that intrigue me, pique me, stir my curiosity, seem to have an agenda, or that may hold a clue in how/why/where to understand and treat RA. Mea culpa. In my defense I have answered every question put to me with the exception of disclosing my yearly income; I have not been evasive, I have not avoided confrontation, nor have I been dismissive of anyone. Mea culpa.

Best wishes, Shug [/QUOTE]I don't believe you will ever get the answers that you seek.  I could be wrong, but I doubt it.  Diversity of opinion apparently is not appreciated by some posters..........

Nope, you're not going to get it.  Find the info you wanted yourself - it's been posted on AI.

Hugs,
 
Pip
 
[QUOTE=Pip!]

Nope, you're not going to get it.  Find the info you wanted yourself - it's been posted on AI.

Hugs,
 
Pip
 
[/QUOTE]
 
 
you're playing a little game.... catch me if you can...   and you look like a fool
 
I've actually given you the benefit of the doubt..... I've wasted my time looking on this site.. pouring over the AP thread.... copy and pasted EVERY post you made on there to a word doc  .......
 
it's not here...  you lie.
 
just tell the truth.......
just tell the truth.......
just tell the truth.......
just tell the truth.......
 
why is that small request beyond your comprehension.?
 
everyone knows that if you had the info.. you would be blasting it over every loud speaker you could find.. and shouting it here too.
 
just be honest, Pip..
 
I don't think that is too much to ask........  when you make statements like you have.. just back them up........ or just tell the truth.......
 
because when you don't.......you lose your credibility...... on all levels...
 
if you aren't telling the truth about your amazing results........ then what else are you being deceitful about?   things that make you go
 
hmmmmmm?
  

have every PM ever written to you don't you.......

and who keeps stuff like that????
ME .....!!!
 
Can I add that Im doing ok on AP. Keeping up with the pre and pro's having a few more added vitamins . My change in diet is good, so an added bonus for getting better.  Im also no ones "Peep" but my own . Reading what Pip has written has helped me with a few hiccups.
If N.I.C.E. hadnt brought out the Sero Neg rule with Rutiximab I would probably have started infusions. Heck Id eat a live ferret  if it helped my RA.....yuk!! Made myself feel ill now
 
[QUOTE=Mrs Pincushion]
  

have every PM ever written to you don't you.......

and who keeps stuff like that????
ME .....!!!
 
Can I add that Im doing ok on AP. Keeping up with the pre and pro's having a few more added vitamins . My change in diet is good, so an added bonus for getting better.  Im also no ones "Peep" but my own . Reading what Pip has written has helped me with a few hiccups.
If N.I.C.E. hadnt brought out the Sero Neg rule with Rutiximab I would probably have started infusions. Heck Id eat a live ferret  if it helped my RA.....yuk!! Made myself feel ill now
 
[/QUOTE]
 
what IS your point in quoting me, Pinnie?
 
we want PIP's truth.
 
YOU HAVE IT??  you keep everything? then be so kind as to direct the rest of us to where........  because it does NOT exist.
I was having some light hearted fun babs....you asked who saves those things!   I just said I do...its why I added the laughing smilie  to keep it light hearted.Sorry if I offended youyou certainly didn't offend me... I didn't understand why you felt the need to document that at that particular time..
Keeping PMs and trying to find someone 's obscure truth that doesn't exist.
 
two different things, as I see it.. that's all.
I give up with you.....You see the bad side to everything anyone says to you...It was a joke about PM's Babs nothing less nothing more. Im off to have lunch with a friend and to share a laugh or two. I hope your day is a good one too.because I don't think it's funny that Pip Lies about what she claims...... and then when asked for proof...she lies more?
 
no......
 
I'm sorry, Pinnie....... but I don't think that is funny at all......
 
It's really sad to me...... sad that Pip can't or won't stand behind her words...... sad because people can be led astray by lies.......
 
gee.. sorry I don't get the joke.
[QUOTE=Pip!]

Nope, you're not going to get it.  Find the info you wanted yourself - it's been posted on AI.

Babs not once did I mention it being funny about pip...I just said I have been given some good info here and there. The joke was about me saving PM's and the joke was about taking anything id if cured my RA...there was nothing against you or anyone in that post but you are making it more than it was [QUOTE=Mrs Pincushion]The joke was about ...[/QUOTE]
Mrs Pincushion, while I appreciate humour at least sometimes humour is inappropriate to the discussion. Humour can be a wonderful tool for elevating the mood, lightening the moment, or diverting attention, but humour is best when used with discretion and in accordance to the moment.

FWIW, Shug
It was in the moment..babs asked  "who saves their PM's  I stated I did...where is that inappropriate?  I even added a blushing smilie...I also said id eat a ferret if it cured my RA...again...i didnt mention anything about pip lying or not lying, i didnt say anything bad about babs, pip or any other member on here..I have been on this board for many years and seen jokes come and go in many forms from   many members, I dont intend to upset anyone but I dont intend not to post in fear of upsetting the few on here who are determined to make an arguement out of my posts.Yes babs did ask on 15 Apri l2009. How in the moment is that? Let's see today is 06 May 2009.

Post, don't post, your choice, however I too have the right, as a member of this forum, to disagree and/or to take exception.

You may not have intended to cause an upset, but your joke fell flat within the boundaries of the last 36 hours of posts in this thread.


[QUOTE=babs10]because I don't think it's funny that Pip Lies about what she claims...... and then when asked for proof...she lies more?
 
no......
 
I'm sorry, Pinnie....... but I don't think that is funny at all......