My Problem with Brrdgirl | Arthritis Information
Is she can't remember who she is -
Bird Girrl
Newbie
|
| Posted: January 21 2008 at 2:54am | IP Logged |
| | Pip, by host they mean Host for parasites. So the whole white cell
business in South America is because of parasites not auto immune white
cells. Lucky for US residents we don't have too much problems with being
Hosts and thus no concern for the immune white cells.
Buckeye is right, the trigger can be anything. Viral, Bacterial or stress like
Sharo. Gosh what a day for you. Having all that happen explains it.
It is not contagious. No one is going to catch it from anyone. It is genetic.
As has been stated, everyone in the research arthritis field--the
professionals, you know, real medical people not wanna bees.
Robin |
Now, if you're gonna troll from AF, you should stop pretending to be anything other than what you are - an Anti-APer. Nobody understands why you are so afraid of this? Why are you so upset that others are healing?
Just be Anna and be done with it.
Pip
It's hard to know who anyone really is on any message board.Don't be silly - of course you know who she is and always have. She's your lap dog.
Pip
There you go...why I try to avoid discusions with you :(Lynn, are you seriously trying to tell me you didn't know that was Anna? We've only called her on this too many times.
My concern is that she's only here when you're upset at some post and you need a rabid response so you can maintain your "princess of sweetness and light' demeanor. She always does your dirty work.
Why can't you do it yourself?
Pip
That's right, it's a vast conspiracy..ROFLOL And actually, I'm the Vitamin D Queen...The only reason you ever started posting about Vitamin D is because KarinRA mentioned the MP. Up until then you hadn't been on it. Do you just do the opposite of what we research?
Actually, its not a 'vast consipracy' - its a concerted effort by a small group of people to discredit something they haven't tried. These people use press releases instead of science, astroturf, and wouldn't know a double blind study if they bit them on the ...nose.
Again, I will offer both you and Anna - try this for one year (you're both refractory and have a history of long term immunosuppression) and post about it.
At the end of the year, you will be one of us.
Pip
Edited for a missing 'and'.
Pip!2008-05-30 10:53:52ROFLMAO yeah like me heheWelcome to the club, LuAnn :)
Pip,
Why in the world would I want to try AP....I'm doing wonderfully on Rituxan. I like a med that I can use once a year and that allows me to reduce my meds. Plus, I feel great. I really can't have any kind of conversation with you. It is a waste of time and energy...which I have plenty of, courtesy of Rituxan :)
And you are again wrong about the whole Vitamin D thing. I read an article on WebMD and it got me interested in the Vitamin D/RA connection
Lynn492008-05-30 11:13:43Well, keep the idea in the back of your mind. I'm here if you need me.
Pip
I am not an AP person and am trying all RA stuff first, but what i don't understand is why people are so narrow minded.
I'm not trying to call names or anything, but this disease is different in EVERYONE. Some hurt here, some there, some triggered by stress, some infections, some this or that. We all start different, live different, hurt different, some have other diseases also, some just hurt in a finger.
It doesn't matter.
All people are different. I have always believed that this disease is actually a million diseases that they call one thing. biologics work for some, mtx works for some, AP works for some. Nobody is ever going to say "Hey! This works for everyone!".
I just don't understand why people are so closed minded.
I was on another board years ago and was attacked constantly because i would come in and say that i heart fish oil works or that i heard cayanne pepper works. Today people know it works, but it was just a dream to most back then and they treated me bad for the ideas.
People just need to open their minds, anything can work for anyone, finding the right treatment is what is important to each person.
My RD put me on Minocin, and I did not even ask. Grant it I am NOT taking it now, because it made me lightheaded and I was having trouble walking and balancing at the time. I have thought about starting it back up, but I am saving it. Why wait all my opinions at once?
Boney,
What's a DAS score?
The Disease Activity Score (DAS) is a combined index that has been developed in Nijmegen in the eighties to measure the disease activity in patients with Rheumatoid Arthritis (RA). It has been extensively validated for its use in clinical trials in combination with the EULAR response criteria. Its easy use makes it also possible to collect valuable information about the disease activity of your patient in daily clinical practice.
Evaluation of response to a treatment can be made much easier and more objective using the DAS. Just assess the number of swollen and tender joints and measure the ESR. The DAS will provide you with a number between 0 and 10, indicating how active the rheumatoid arthritis is at this moment.
Recently the DAS-CRP has been developed. The C-reactive protein (CRP) may be used as an alternative to ESR in the calculation of the DAS or the DAS28.
Using the DAS, several treshholds have been developed for high disease activity, low disease activity or even remission. Also response criteria have been developed based on the DAS, so when the DAS of a patient is measured at two timepoints (e.g. before the start of a treatment and after 3 months), the patients clinical response can be assessed.
This site provides all the information you need to start using the DAS. Also an overview of the development of the DAS is given. All original references regarding the DAS can be found here. Frequent problems arising from the use of the DAS are targetted in the section
http://www.das-score.nl/www.das-score.nl/index.html
Lynn492008-05-30 15:04:30
[QUOTE=Boney]hi guys whoooo hooooooo
[/QUOTE]
Hey Boney,
Are you currently on Arava? How long have you taken it? Has it help? My new RD took me off plaquenil and mtx. She put me on 20mg Arava and I was curious how it has worked for you.
Lisa <><
the DAS system does not cover everything my problems at present
are jaw neck back and chest whith little visible infammation
the chest is included in das scoring but the rest are not ..i feel ill
and my neck is getting worse.
Boney
Pip,
The problem you have with birdgirl is the same problem you have with anyone that questions you regarding the statements you make about minocin and the roadback organization. You expect to say anything and everything without merit and or scientific or clinical data and expect everyone to accept it as gospel because you and a few other obsessed minoheads say it to be so. It doesn't work like that. You and the other minoheads are the first to criticize and attack the biologics and dmards taken by most RA sufferers even tho the drugs have a proven track record showing the slowing of damage and the relief of suffering. You on the other hand, and a few other minoheads make wild statements that you can't back up by proven fact. The roadback foundation is quick to release themselves from legal action by this statement.
"The Road Back Foundation does not engage in the practice of medicine. Consult with a physician to assess any medical treatment that is being considered. The Road Back Foundation encourages healthcare consumers to thoroughly investigate and understand all treatments and medications before proceeding. This material is for educational purposes only."
That's not very reassuring to me. What if enbrel or rituxin or humira made such statement? Well?
The one study that raodback uses as it's claim to fame is only a paid marketing study using people supplied by roadback and paid for by roadback. It's scandoulas at best. It's probably joint destroying at worst. No legitimate organization would ever do such a thing as pay a marketing firm to make a study. The cell phone companies did the same thing to convince us that cell phones are not dangerous to our health.
You have palindromic arthritis. You claim to herx, a good side effect from the ap when in fact after over two years of ap the palindromic arthritis is still acting like palindromic arthritis. You have joint pain for a few hours or a couple of days and then you have no pain for weeks or months and then you have pain again. You want us to believe that you are herxing when in fact that is just the way palindromic arthritis affects a body. You brag that on the minocin you have no bone or joint deterioration. What a surprise, palindromic arthritis causes no joint or bone damage. You do not have our disease. Just because in the last month or two 4 or 5 people have come to this forum looking for information about therapies for rheumatoid arthritis and members tell of the successes with enbrel, humira, rituxin orencia and the other remarkable drug therapies all 4 or 5 after being sent to roadback by you, come back and thank you for saving them by sending them to roadback. No offense, but you've taken too much tramadol.
I was skeptical about minocin until my University of Michigan Rheumatoligist assured me that he has success with minocin therapy with patients affected with mild rheumatoid arthritis. He said that it is as effective as plaquinal (only safer) against mild rheumatoid arthritis but is not safely effective against moderate to severe rheumatoid arthritis. I know that you believe the University of Michigan doctors are stupid and living in the dark ages but I believe them to be much smarter and more credible and more entitled to give rational medical advise than someone like you with a "roadback" medical informaton degree, leaves me worried about those you are misleading.
You play with peoples joints and bones and by the time they find out that you are minocin obsessive with only palindromic arthritis, the damage is done and they have no legal recourse. Everytime you make wild statements about ap therapy some member should warn any and all new members that may think that you have some miracle cure that even roadback doesn't believe in enough to leave themselves legally open.
You now keep spewing that even the American Colledge of Rheumatology endorses ap therapy. It does, for mild rheumatoid arthritis. It does not endorse minocin over other dmards but accepts the fact that it is another avenue in the fight against mild rheumatoid arthritis. The problem is that when you tell the story, the American Colledge of Rheumatology is endorsing minocin above all others for all rheumatoid arthritis including moderate and severe, THEY AREN'T. If you would be only truthful and not embellish the facts, you would have some credibility but you continue to hurt your own credibility by being uncredible, it's that simple. Give us only the facts, just the facts backed up by science and clinical data, not some fellow minoheads acting like newbies.
LEV.
levlarry2008-05-30 19:53:33Dear Lev -
My husband, who watched me spiral downward, spending days, then weeks, in pain until it was constant, so much so I couldn't open a jug of milk, suggests that you please put your tin foil hat back on and return to hiding in your closet.
Pip
Pip and Pip's Husband,
I don't know what you mean by "putting on my tin foil hat and returning to hiding in my closet. I don't hide in my closet, I just have other things in my life that take up my time. I can see that you and your husband are certainly a good match. Rather than have a civil and honest debate, you both go to your silly type sweetened attacks, lucky yous found each other. I know that you are passionate about minocin but you need to keep in mind that any one that may take the road that you suggest, may damage their joints and bones beyond repair cept for replacement. If you make a statement about something so very serious and life threatening, you need to back it up with scientific fact and legitimate medical data, not "in your honest opinion". Your honest opinion won't buy a pound of dry beans in alaska. Rheumatoid Arthritis is a very serious disease that needs absolutes, not opinions, inuendos, and snippets that go nowhere on the road to truth, it's just that simple. You are dealing with peoples future lives and having them follow you down the road that may not let them come back to good. When their joints are damaged beyond repair, what are you going to say to them. You won't even apologize. As in the past you will blame the RA sufferrer for AP not working because they didn't follow protocal to the exact degree, remember that? Real Rheumatoid Arthritis damages and destroys joints and bones. If an RA sufferer has joint pain, they have erosion, Palindromic Arthritis can be extremely painful just as Rheumatoid Arthritis is but Palindromic Arthritis does not damage bones and joints. The American College of Rheumatology says that minocin may take up to a full year for full effects, and here you are two years later still taking pain meds. Just keep it real, that's all, just keep it real, no more honest opinions.
LEV
Lynn, you should try to cultivate more intelligent supporters. It weakens a lot of what you post about biologics. Anna and now Lev - quite a group you have started there.
Lev -
Thank you so much as 1) I have a wonderful man and 2) he was there step by step with my spiral into hell and he is intelligent enough to understand a lot of science (math and sciences background) of what we found and extrapolate on how it could effect me.
Like Anna - you seem to have a memory problem and I suggest to you that you consider printing this off and trying to memorize it. To save myself more typing in the future I'll just send this post to myself and whenever you forget, will repost the same information until your memory improves and you can process it. I'm guessing it will take about 5 times as it did with Anna - and only goes to show how you cannot even remember the basic details which causes your 'debate' to lose points because idiocy tends to get people to look at the stuff I post. So thanks in advance for the new APers you're gonna drive to us.
As you said in your last post and I quote -
"the biologics and dmards taken by most RA sufferers even tho the drugs have a proven track record showing the slowing of damage and the relief of suffering."
Slowing. S L O W I N G! You still get damage. We don't if we get to remission. Simple as that. With that being said your quote of "you need to keep in mind that any one that may take the road that you suggest, may damage their joints and bones beyond repair cept for replacement" applies to you too. If you take them down the wrong road - you are the one causing damage.
Scientific fact? We have studies designed to fail that passed with flying colors. You have studies paid from by the maker of the drugs. Hmmmm. Which is more reliable?
1.
http://www.annals.org/cgi/content/full/122/2/81 Tilley MIRA 48 wks minocycline vs placebo, 1995
2. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10446869&dopt=Abstract
O’Dell 4 year Minocycline vs placebo, early-onset RA, 1999
3. http://www.rheumatology.org/public/factsheets/minocycline.asp
ACR on Minocycline, updated 2006; “Minocycline is prescribed for patients with symptoms of mild rheumatoid arthritis, sometimes in combination with other medications to treat patients with persistent symptoms of this form of arthritis.”
4. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16447240&dopt=Abstract
Doxycycline + MTX vs MTX alone, no previous DMARD, <1 year with RA, 2006
5. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11273473&dopt=Abstract
India study, 6 months, Doxycycline vs MTX 6 months, 2000
6. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11665963&dopt=Abstract
Minocycline vs Plaquenil O’Dell 2001
7. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9592865&dopt=Abstract
Chinese, Minocycline + unspecified DMARD, DMARD resistant before study, 1998
8.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10047718&dopt=Abstract
Japanese study, DMARD resistant, 6 mos, 1 yr, minocycline only, 1998
9.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1334514&dopt=Abstract
Israeli study, DMARD resistant, 48 weeks, minocycline only. Limited data, 1992
10. http://www.jrheum.com/abstracts/abstracts06/224.html
London study. Tetracycline plus clindamycin vs no treatment, 1 year, DMARD resistant, 2006
And these are only the 'biggies'. NOTE THAT MIRA and that these are NCIB and science sites - not the press releases favored by Lev, Anna and Lynn.
I suggest anybody interested in Minocyline search that on PubMed. You'll be surprised at what you find out in serious research into Cancer, MS, neurodegenerative diseases, IBS, Crohn's, UC, macular degeneration, inflammatory pathways etc.
Again - my chart says PRA, RA and back to PRA. What does yours say? I'm reversing. And my husband and daughter love it.
The ACR says it is first line DMARD on par with MTX and Plaq - wouldn't you prefer to have tried that before 'stepping on the ladder'? Why haven't our doctors told us about this?
Finally - your brain fog has lost sight of the reason for this thread. Anna and her trolling. At least I can say you always post as you. Mostly. Somebody doesn't have the guts to be who they are and stand up for what they believe is somebody suspect. Somebody with an agenda.
Anna has the right to post here all she wants but since she is the person who started all the AI fights in the past, maybe she is ashamed.
And she really has to do something to help her remember all her aliases. At least we can help her there.
Pip
Pip,
Do you know what year this is? This is 2008. Rheumatoid Arthritis medicines have come a long way since 1992, 1994, 1995, 1996, 1998 and 1999, the year that your snippet studies were posted. All of the studies compare the cyclines either against methotrexate or used with methotrexate and you want someone with a good mind to make a decision based on those old studies comparing methotrexate and cyclines? What happened in Japan since the 1996 that they concluded that more research needs to be done? What happened everywhere that the studies comparing cyclines against mtx that you posted links to since the 1990s? I really don't know many people that have had good luck with mtx alone. Certainly if they were helped by mtx alone, they have a very mild RA. I would be embarrassed to post such out of date snippet studies even if I were selling snake oil, no offense. Even you latest study you linked to (2006) by American College of Rheumatology says this and I'll take it from The snippet link where you posted only what seems to be overwhelming evidence of the effectiveness of minocin, but here is the important truth part. This is taken from the link you posted from the American College of Rheumatology 2006 study:
Description
Minocycline (Minocin) is a member of the tetracycline group of antibiotics. Although rheumatoid arthritis is not an infection, minocycline may improve the signs and symptoms of this disease. There is evidence minocycline may slow the progression of joint damage in arthritis and prevent disability like other drugs in the class known as DMARDs (disease-modifying antirheumatic drugs).
Uses
Minocycline is prescribed for patients with symptoms of mild rheumatoid arthritis, sometimes in combination with other medications to treat patients with persistent symptoms of this form of arthritis.
See how easy the truth is? The complete truth. This is a post from 2006, all your other study links are studies from 1992 thru 1996, hello? Anyone home in there? You claim those studies to be the "biggies"? Too much tramadol indeed. Here is another complete lie you posted:
"Scientific fact? We have studies designed to fail that passed with flying colors. You have studies paid from by the maker of the drugs. Hmmmm. Which is more reliable?"
I don't post studies unless they pass the fda study test. Want to try to explain this roadback claim to fame harris study? It's your claim to fame. Talk about a paid for study, it doesn't get any slicker than this study. Everyone needs to read the about section at the bottom, like I said, scandalous at best, joint damaging at worst. From the roadback.org:
* See complete Harris Poll results.
This is what you said:
"I suggest anybody interested in Minocyline search that on PubMed. You'll be surprised at what you find out in serious research into Cancer, MS, neurodegenerative diseases, IBS, Crohn's, UC, macular degeneration, inflammatory pathways etc."
What does that have to do with the price of beans in alaska or with rheumatoid arthritis? This is a rheumatoid arthritis forum and I am extremely happy that minocin is found to help the aforementioned diseases. You just seemed to leave one out, rheumatoid arthritis, just the facts, mam.
And once again, this thread was started to attack birdgirl because she questions your facts about ap therapy. It has nothing to do with her using an alias. She has every right to question especially when the answers just aren't there. Good for her. Even in your previous post you've tried to truthfully deceive.
LEV
I just don't understand why people don't think there are multiple treatments out there and that there are multiple types of RA.
It's all been proven.
[QUOTE=bubbagump] I just don't understand why people don't think there are multiple treatments out there and that there are multiple types of RA.
[/QUOTE]
That is a very good question.....And, I didn't know that I had become responsible for what other people post on this forum.
Lynn492008-06-01 12:54:51
[QUOTE=bubbagump]I just don't understand why people don't think there are multiple treatments out there and that there are multiple types of RA.
Lev -
When people tell you they are severe - you say they aren't. If one lurks on the Roadback, they can judge for themselves how severe the people sound. Newbies have an easier time. Period. But it definitely works for severe. I was severe. Now I'm not. KarinRA was severe. Now she's not. Ask Suzanne how severe she thinks her baby is.
I have an idea. Lets raise the money and get some of the severe here to try AP. I'm sure one of the AP docs would post the info as a 'case study'.
Think about it - we could put another study into AP - and have the info there for other severe people who are afraid to try.
Like Lev is.
And Anna.
Pip
P.S. Bubba and Boney - unfortunately, some people get upset if you question authority. They're just afraid they chose the wrong train.
Copyright ArthritisInsight.com