Reported to Arthritis Foundation Forum Management

Are you the same "Pip!" on the Roadback forum?

If I recall correctly, you do NOT have rheumatoid arthritis and are a big advocate of AP and try to get everyone to go on AP regardless of their type of arthritis, right?  I think what that forum is doing is dangerous, IMHO.

For anyone who would like to read all of it for yourself, including pip's posts, here is the link:

http://www.rbfbb.org/[/quote]

Reported Arthritis Foundation Forum Management

Holy Cowsers!  What in the world happened here on this thread???  I'm not sure what all that was about Pip, I asked you a few simple questions and wanted a few simple answers, which none of the "flap" (as Grandpa stated) addressed.

Nevermind, if you'd rather not discuss it that's fine with me, no problem.  Sorry to step on your toes.  But I still stand by MY opinion that I think AP therapy is a dangerous approach to RA Treatment and I don't particularly agree with you "pushing" it so hard.  But that is MY opinion, we all have them.

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

Cathy - amazingly, my reporting of the two prior posts by Ron/Lev et al do not show that 'reported to AF' at the bottom.  Either there is a glitch, or AF Dude is not doing his job.  What AF Dude doesn't realize is, when Foundations and large organizations find themselves in the middle of a PR debacle, the low man on the totem pole is blamed.  That would be him.  So, I seriously suggest he gets off his back side and attempts to mitigate damage control and respond to my emails/reports.  He needn't worry, I believe I have copies of both reports if he doesn't.

Texas Slick -

Since you have been responsible for most of the hate and disruption on that other board, I find it disingenuous to say you wanted a few simple answers, especially since you have had them time after time.  I think you were 'instructed' to start a flap.  I also believe that traditional meds are MUCH more dangerous than antibiotic therapy and can prove it if you are interested.  I've found some Insurance company stats on the effectiveness (much less than reported in the studies) and cancer links (much HIGHER than reported in the studies), should you wish to see it.  Numbers that should make one seriously consider doing anything to stay off the 'ladder'.  That being said, I will not post it because it will be scary to many people who are on traditional meds (unless somebody wants to see the 'truth' instead of paid for studies'). Therefore, I will politely offer my suggestions about AP and will not stop.  However, if I am continuously attacked for my choice of an approved ARC DMARD, I will be forced into defending my belief's with the above mentioned insurance statistics.  I suggest you stay off my AP/Lyme threads and I'll stay off your biologic threads and we will peacefully co-exist.  At least until the FTC/FDA input begins.

Lev -

I figured it was you, as you misspelled your drugs name in your 'troll' avatar.  I have not said anything about 'cure' on this board.  I am not cured.  10% of APers go med free - essentially cured.  I intend to be in that group.  When I am med free, and if I maintain that for 5 years, then my medical, and more importantly, insurance file, gets changed to 'history of'.  This is my goal.  I was diagnosed as 'severe early onset rheumatoid arthritis'.  It was changed to Palindromic RA at my insistance to account for my 'unusual symptoms'.  In 5 months I evolved up to 'regular RA.  On AP I've rewound my disease enough to be considered Palindromic again.  I do not know what upsets you most, that we can rewind our diseases on AP, or that you are not Palindromic.  Either way, it doesn't matter because the truth of the matter is AP will work for severe RA, severe Lupus, whatever.  But the doubters such as yourself alway have to say it was something else other than the minocycline that caused 'remission' - either 'you aren't RA, or you aren't severe, or you got a spontaneous remission' anything other than the truth - which is they got that way with a low dose antibiotic.  And stop bothering Grandpavan with the AP studies, they've been given to you before, multiple times.  Would you like my Ritaxan studies?  Finally - as a parting jab - I'd like to point out that the web ratings for ArthritisInsight has dropped like a BOMB since we were forced out of there by you and the AF attack squads.  I'm using that information with the advertisers.

Jennifer -

I apologize for your being upset with these posts.  You have no idea how hard it's been to deal with these attacks from these people for so long and is why I/we have been forced into seeking legal counsel/writing campaign to elected representatives.  Unfortunately, most of the posts are from the regular and most respected AF names who are 'trolling' on that other board.  Basically, they are supportive and helpful here, but there they use the language like in the links under different names.  The filth is amazing - but - they are the traditional meds people on AF as well as some of the die hard Christian coalition.  Is it no wonder some of us wonder about the advertising aspects of these people?  I mean really, the only people they 'attack' are those who don't use biologics.  It doesn't matter, AP, diet, herbs and minerals.  As long as you use biologics, you're safe.  But if you stray from the 'company line'...you pay.

Hugs,

Pip

Pippers, you are going to have to apologize to AF Dude, I typed in those comments myself as you had to put in something to get it to post - you will note its not the same "Reported to AF Forum Management" phrase each post and Suzanne's quote is missing it too - don't know how she did it   He also could be on a long, holiday weekend.

I am hopeful the Arthritis Foundation will take care of these trolls who have illegally stalked us over from Arthritis Insight and have libeled us APers.  It's also a crime in Florida. 

Fact:  the prescription drug Minocin is recommended by the American College of Rheumatology for "mild" arthritis treatment.  You can confirm this fact on their website. 

Fact:  last week at my 3-month rheumatology appointment, after 2 years of Minocycline treatment for my Rheumatoid Arthritis, I am for the 11th straight month, disease-activity free. 

Fact:  it was my third visit to this new Rheumatologist (my FP RXs the Minocin).  I finally asked him if he was going to discuss my medication treatment for my RA.  His answer, which is UNBELIEVABLE, was that because of my lack of disease activity, I DID NOT NEED TO BE ON ANY RA PRESCRIPTION MEDICATION FOR MY PHYSICIAN/BLOOD TESTED-DIAGNOSED, CONFIRMED IN WRITING BY A LICENSED BLOOD LAB Rheumatoid Arthritis, plus more AIs.  What The Heck?  What happened to hit it hard and fast?  What about the #1 recommendation of the ACR that prescription medication treatment be rendered to ALL RA patients despite the duration or level of RA disease activity? 

He couldn't even figure out the reason why I am doing so REMISSION-LIKE is from the Minocin?  I then said I am taking Minocin, and he hadn't even realized this from my chart?  ~~flip, flip, flip go the chart pages - quote: "You can continue taking the Minocin."  ~~WHAT THE HECK, you aren't even PRESCRIBING IT???  You just said I didn't need to have ANY DMARDS, RA etc. medication(s) because of my lack of active disease markers, despite an RF of 57, a positive anti-CCP, and two episodes of sero-positive CRP, but now its "okay" to take Minocin?  WTH?  

Fact:  1 out of 3 patients on biologics get 20% better after 6 months of treatment (that's the study Pip is referring to.)  I personally don't think this is an impressive record.  RA is still described as a chronic, progressive, debilitating disease of no cure. 

Fact:  Antibiotic Protocol or the taking of Minocin for rheumatoid arthritis is a well-established, American College of Rheumatology-approved prescription-only medical treatment.  Get over it.

Sorry about your friend Jennifer, this is one reason we abandoned all hope over on Arthritis Insight.  We are hoping for better treatment by the moderators and owners of the Arthritis Foundation so this first sign of infection here is contained immediately.  I believe harassment is against this Forum's rules. 

Take care everyone ~~ Cathy

Pip,

How dare you accuse me of being a party to that post on the AI Forum!  The link you provided went to a post that was disgusting but I'm not surprised by it all, those type of posters/members are exactly the reason I'm no longer a member there.

I'm a sick to death about being accused as someone on the AI board.  I'm not sure why you have targeted me simply because I disagree with the AP approach, but it needs to stop.  I'm a quiet member here and plan to remain that way.  After reading a few of YOUR posts I have concluded that you're the member here where the controversay swirls.  Kindly leave me out of your vendetta.

Thank you!!!

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

Edited for highlight of red.  C

Reported to the Arthritis Foundation Forum Management. 

Are you the same "Pip!" on the Roadback forum?

If I recall correctly, you do NOT have rheumatoid arthritis and are a big advocate of AP and try to get everyone to go on AP regardless of their type of arthritis, right?  I think what that forum is doing is dangerous, IMHO.

For anyone who would like to read all of it for yourself, including pip's posts, here is the link:

http://www.rbfbb.org/[/quote]

Exhibit A

Oh, I should add to my story that at my SECOND visit with my new Rheumatologist, he went over my brand new hand and foot x-rays he ordered at my INITIAL VISIT a month earlier, which showed NO EROSIONS AT ALL, after almost 2 years on Minocin, plus now 11 months REMISSION-LIKE free of RA blood test and physical (no swollen joints, visible inflammation, etc.) markers. 

So, if you are considerng AP therapy, talk to your Rheumatologist, see what they have to say, if its a go, keep up with your x-rays from your baselines and good luck. 

Take care ~~ Cathy

Disclaimer:  I took MTX, Predisone and Folic Acid my first year, which resulted in the dropping of my blood work into highly abnormal and unusually low white blood cell markers, which my first rheumatologist (who just quit practice and left the state would not address), so I quit him and MTX and choose AP Minocin, with my FP's blessing after she checked out the Doctor's Protocols for prescribing AP on the Road Back website.  I took Predisone for five months, which has resulted in osteoporosis and a cataract.  So far on Minocin, I am still fighting my life-long systemic yeast problem from leaky gut, which is improving with the OO/LD, probiotics, a chronic disease patient diet, and from anti-fungal prescribed drugs to the recommended supplements for systemtic yeast reduction. 

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield

I'm not sure I have to apologize to AF Dude yet, he has yet to reply to my first 'report thread' which I asked him to do when Lev showed up.  We shall see when he returns from the long weekend.  Either way, since the Arthritis Foundation is losing respectiblity on other forums, he should be apprised of that situation.  Failure to mitigate, quickly and effectively, will say a lot especially since this is 1) a moderated forum and 2) a forum that is sponsored by a drug manufacturer during a national debate on Health Care Reform.  Plus, AFers bragging of using the AF glitch that compromised other members information will be a major trust issue for the Foundation.

Texas -

I have no vendetta - I do have a mission and that is to investigate and publish what it's going to cost to get us our cure.  Conflicts of Interest (COI), undisclosed payola, falsified studies, Pharma paid 'gifts and free exotic travel' to physicians for continuing education credits, drug reps wining and dining MD's and buying lunch for the offices,  etc all contribute to a 'business as usual' mentality that effects us, our choices in medicine, and reinforces a status quo that puts profit before patients, 'blockbuster medicines' before safety and efficacy, and 'targeted therapies' before 'the cure'. 

The recent influx of COL's onto bulletin boards who publish misleading or false information in order to gain market share or possibly influence upcoming legislation is something near and dear to my left-leaning heart.  Which is why I shall continue to copy and incorporate this information from multiple sites into letters to our elected representatives, newspaper writers and editors, marketing blogs, advertisers on websites, and governmental regulatory agencies until we get this addressed.  My suggestion is this - you can feign innocence until the cows come home.  If you are innocent, it will come out.  However, if you are guilty, as many on AI seem to think, that's going to come out too. 

There is always the possibility that somebody on AI dislikes you for some reason and has compromised your name and reputation.  Good luck taking it up with Ernest Priestly and Arthritis Insight.  Possibly you are posting there as Babs part of the time - also a rabidly pro-Pharma person who is connected with Texas and is on Orencia.  A slightly worse scenario is that you are just some random nutjob who feels stalking others because their medication choices are different than yours is somehow justified.  At least there is little chance of jail time with that one.  So far, with what I've been able to see thrown about when discussing what to do about the FDA/FTC and COL's.  The worst case scenario is that you are a COL.  Because, if you are being paid to do what you've been doing, or are 'influenced' to do so by some people who are paid to push "aggressive medicine" (I still can't find any research that backs that up) than that is also going to come out.  Did you know they FDA and FTC are considering 'penalizing' COL's who publish false marketing information on support group BB's as they would a drug company or marketing firm?  Hundreds of thousands of dollars per infraction.  So, if somebody says Rituxan (Humira, Enbrel, whatever) stops damage, and they are a COL, gee, that's gonna hurt if they're 'paid' to say that.  And as for yours (or the person who says their Texas Slick on AI - we'll find out the truth about that eventually) says we APers 'get paid to push Minocycline' - I'm praying I get turned in to the FDA/FTC.  Praying!  Please, please, please!  That's how much I'm praying.  Why?  Because I'm not being paid, and that's going to give my allegations a LOT more power.  Oh, and leaves the door open for me on so many levels. 

Grandpavan -

Yes, I agree so much that we should be discussing healing and offering support.  However, its not possible with some of these people.  This is the line in the sand.  How many people were run off the old AF board by this pack of...pro-Pharma, pro-aggressive medicine people?  How many real people with RA who chose to treat their diseases alternatively (diet, Mino, herbs and minerals or baying at the moon, it doesn't matter, does it)?  Remember the attacks poor Susanita had to suffer?  Or that poor person who got remission with distilled water?  Instead of being happy for that woman, she was hounded out.  So, while I understand your kindness as usual, at this point, I must say, tell these people to stand down and we can all agree to post in harmony, but do not start in on me again. 

Hugs,

Pip

PS - I would like to apologized to the true Christians on AF for any remarks that could have been considered upsetting.  In my haste to post before I ran out the door, I fear I did not make myself clear.  There are Christians, and there are 'nominal' Christians.  Just like there were devout Jews; and moneychangers in the temple.  Letter of the law; spirit of the law.  My complaints are with the 'moneychangers' and I truly apologize for 'lumping the good in with the bad.'

I'm against AP because of what I've read in medical reports and from what I've been told by 3 different rheumatologists in very lengthy discussions.  I feel it's a dangerous approach as we still know so little about the long term effects of AP as a whole and our already compromised immune systems.  And yes I'll agree with you and many that there are also dangerous side effects with other drugs used to treat RA like my Orencia but I feel that my chances for a better quality of life comes with the Orencia (I used to use Enbrel but it never really did it's job) vs. AP.  I feel that AP further compromises our immune systems and I don't want to mess with that at all.  This is MY opinion and I'm entitled to it just as you are.

I approached you here because I've noticed increased posting by you and a few others about AP and it does appear that y'all are "pushing" it quite rabidly.  It's also disturbing to me how you attack drugs like Orencia, Enbrel, Humira and the like and make members uncomfortable discussing being treated with those.  Those drugs are fine to use, if it works for them and I don't think that the makers of these drugs are all in cahoots to kill us after making money off of us.

I don't understand anything else you just said about big pharma, advertisers, legistlatures and such, it sounded like a conspiracy theory to me.  I'm not involved with AI, any of their members (unless they are here too and I just don't recognize them) or someone in Texas.  I was born in Texas, my family is in the oil business (please don't shoot me), I lived there most of my life and now I live on the east coast, that's why my username is Texas Slick.

I don't think I said anything offensive but if I did I apologize.  You admitted rushing out the door and posting without thinking or something like that.  When I first posted to you, I was aggravated at the constant bombardment of AP, AP, AP and I reacted without thoroughly thinking through my words.

Have a good day!

Hugs,

~TS~

"In seeking wisdom thou art wise; in imagining that thou hast attained it - thou art a fool."  Lord Chesterfield