My goodness. I am so tired of AP vs traditional med discussions. We all use what works for us. We are individuals and what works for one doesn't work for others. I mean, if the meds work, does it really matter by what mechanism? Surpress the immune system or kill bacteria, so long as you can make it out of bed in the morning, who really cares. Sorry for the vent, but I am really tired of this debate. They are both theories. None of them are carved in stone. 20 years from now we might find both theories are wrong and eating too many potato chips is to blame. ( A lame attempt at humor). All that matters in the here and now is quality of life. I don't care what gives you that, just wishing for everyone to achieve it. I could care less if you rubbed doggie doo on your joints 3x a day, so long as you feel that it was helping you. I would support your decision from a distance and down wind
I am thinking neither are a bed of roses, but I think I would take the pain over both of those smells.
Actually, I care, A LOT. Being a cancer survivor, suppressing my immune system is a REALLY big issue. I've never felt comfortable being on traditional/biologic meds, and have felt like I've been walking a tightrope since the day I started taking them.
Quite frankly, I have found the AP versus traditional discussions to be very informational. In fact, if it weren't for this forum, I'd probably still be stuck in the 'traditional rut'. Which for ME, is no longer an option.
And, why is it we can discuss and debate the efficacy of Humira over Enbrel, or Remicade over Rituxan, but everyone get's their panties in a wad when AP is mentioned? I don't get it!
Guess I just had to vent too!
I am thinking neither are a bed of roses, but I think I would take the pain over both of those smells. [/QUOTE]
Personally, I like to go to bed smelling like Icy Hot. Maybe that is why I sleep alone.
I don't mind information exchange, it's the mine is truer, better, less toxic than yours exchanges I am tired of. Both treatments have been proven to work, and we all choose the lesser of the evils. We all have different concerns. I like to hear what is working and how well someone is doing. It gives me options to try if my current meds don't work. I just don't believe because it works for one or is non-toxic to one it is true for everyone. I'd probably do AP before biologics if the MTX doesn't work. caprice
i agree 100% with you. whatever it takes.
the problem is that some people have been damaged badly by different treatments. I know someone who was damaged a lot by AP, didnt work and she persisted with it, other people know others who have been damaged by MTX, TNF etc, and so everyone gets a bit crazy.
anna
Caprice your post makes me feel quite saddened really, this is a place for information sharing and support for one another. I'm sorry that you feel the way you do.
There are always new people coming to the boards, and it is inevitable that MOST things will be repeated from time to time. And I don't really think anybody goes down the truer- better road. (Except for maybe those that are selling something).
I think people are just stating what has or has not worked for them, giving good information, and answering people's questions with what COULD be options for them. And that can cover treatments, both mainstream and alternatives, medications, what to have to eat for a treat, what are good shoes - whatever! It's all good stuff.
I can't speak for everybody, really only myself, but I believe that most of here us realise that there is "no size fits all" type of remedy for our affliction, and we are always sharing and searching for hints, answers, theories and ideas, and things that have helped others that may help us.
We all have the freedom of choice in the treatments we try, and I believe we all research them pretty thoroughly, and get a lot of info from the people on here that helps us back up or clarify our decisions about different treatments. People need to share their successes in whatever is working for them, that others may get some benefit from them, and that's what it's all about for me.
We also have the freedom of choosing which posts we read. I don't read them all - if the topic doesn't grab me, I give it a miss.
This is a great forum, and it's been really steady again for a good while - I luv it!! Venting is fine too - and debate is healthy!
anyone ever consider that this is the insane asylum of the galaxies and that we try to survive day by day not to be on the bottom of the heap?
Rose
Kiwilass2, I didn't mean to make you think that I don't appreciate the exchange of info. It was that again I was enjoying reading a thread and it got OT in a AP/traditional med debate. No one was giving any new infomation, just trying to disprove the theories. I read alot, but don't reply often. I just get frustrated when I am reading info and it gets way off topic with no new info being added and the same arguments being made. I'm like-I was enjoying the topic at hand and what does this have to do with anything. Take care all.
Its terrible, and I am sorry if I contribute to it. But when people post lies and exagerations that affect our lives I can not just stand by and watch.
It is not AP vs traditional. AP doesn't work for everyone and takes a long time--while damage happens for the rest-if it works.
With all the recent research stressing early aggressive treatment, waiting a year is wrong.
Bee
Who cares ladies, we all read these sites to glean information that applies to us and to feel that we are not alone. Everyone has a different view point on absolutey everything.... chilllllll a little
Now here's one I wont be trying!!
On the radio last week (in the UK) they had an RA hour. It was very interesting (not as good as this site though), and a lady of 56 who's had RA for 20 years has found a cure..... wait for it......I can feel the tension rising..... Her husband picks up his tweezers and gets a bee out of a jar and makes it sting whichever of her joints is most painful. She said on air that she had given herself the bee-stings initially but that after a while she found herself flinching (Unbelievable), so she gets her husband to do it for her on a daily basis and guess what..... she feels much better. She thinks everyone with RA should have a go!!** (I think I'll give it a miss) I know I tell my son that he shouldnt say no to anything until he's tried it but BEE STINGS, get serious!
Moral is we all like to think that whatever we are taking/trying is going to be the best and it probably if for US. You guys are all old hands and being a newbie this site has given invaluable information and understanding from just about every aspect.... you are all great
I agree with everything posted. My complaint is people from AF posting Astro Turf as a reliable source of information to back up science because they are upset at the pharma posts I've made. Pip I agree, Caprice. We should all be able to agree to disagree. Healthy, intelligent debates are welcomed. Trolling and rude behavior is not. Is this what you are getting at? Take care, Caprice. [QUOTE=BeeBee]
Its terrible, and I am sorry if I contribute to it. But when people post lies and exagerations that affect our lives I can not just stand by and watch. It is not AP vs traditional. AP doesn't work for everyone and takes a long time--while damage happens for the rest-if it works. With all the recent research stressing early aggressive treatment, waiting a year is wrong. Bee [/QUOTE] Hi, Anna: Damage does not have to happen while waiting the "year" on AP. Many people take prednisone, Kenalog, biologics, etc, while waiting for the antibiotics to kick in. Dr. Thomas Brown often used steroids to keep the inflammation down while waiting for the antibiotic to take effect. It is actually important to keep the inflammation down, so that the antibiotic can penetrate the tissue. There were no lies or exaggerations. I think it is very possible to have a nice, calm, intelligent debate. I hope it can continue this way. Take care, Karin
Ok first of all...love the change in your signature Gimpy. Cracked me up. Have you ever seen the original movie or the remake of it? Hilarious!!! I am a believer in whatever works for someone is something that should be respected. It is called freedom of choice and let's all be happy that we have it. I don't do AP therapy. Doesn't mean that I haven't researched it or looked into. Doesn't mean that I don't recommend that somebody tries it. It is just something I choose not to do. There was a post from someone not too long ago who felt she had no other options left. Even tho I do the traditional therapy I still suggested that she look at AP therapy. This may be something for her that actually works and she isn't out of options. Can you imagine the hope this person now has that she is not out of options? Why would anyone not want to inspire hope in someone? It can also take years for traditional therapies to work. It can take years to find the right combo of meds. And sometimes then you don't. I talk to a person here away from the board that does do AP therapy that I have a lot of respect for and has taught me many invaluable things. I even have had a few suggestions from this person for Danielle that I am going to try. But that doesn't mean I am going to stop her traditional therapy. I am going to do it in conjunction with her traditional therapy. I guess it just comes down to respecting each others choices and having an open enough mind to listen to each other and think about what the other has to say. I look at it this way...any treatment you choose has a 50/50 chance of working. If you have found something that works for you great!! Be happy for that person that they have relief from this crud!!! Oh yes...I can say politics when it comes to the AF. Ok the bee sting thing. Ouch is all I have to say lol. But hey whatever works for you. There has been tons of research into bee venom and the healing properties of it. My question is why does anyone feel the need to prove their course of treatment to someone else? Why are argue with someone, it is your right to treat or not treat your RA any way you want. I would think the only person you need to prove your course of treatment to is your RD and yourself. So, why "argue" with someone on your course of treatment? Ok. what gimpy said. *nods* I guess the part that gets all the APer's knickers in a twist is that we are not offered this as an option. Politics/profits should be the last thing a rheumy thinks about when, just after telling us devastating news, he tells us about our med choices. Gramma, Alan, & others have looked into AP and decided against it. How many of us were told about it in non-judgemental terms by their docs? Why was I only able to get info from an Internet AP advocacy group? That's just wrong. So, I'm all for these 'discussions' as GoGo said. Somebody new may like what they see here - see with unjaundiced eyes 'who started it' and ask why? Pip
I was never told about AP therapy by my rheumy. And this man has degrees out the ying yang. Ya think he would have mentioned something about it. Yes I have looked into AP therapy...had long discussions with Pip about it. Had long discussions with my husband about it. Did it all over again when Danielle was diagnosed. It was a difficult decision for me to make. The main crux of my decision not to do it was time. I have so much damage already and piled more on this past fall and winter that I am uneasy with starting all over again with a different therapy and the time it takes for a new therapy to kick into gear. I do feel that if given a choice when I came out of remission that I probably would have chosen AP therapy IF I could have done it right off the bat. My husband refuses to do anything with Danielle that is not traditional meds. Stubborn old fart sometimes. However, I am mixing traditional with some natural therapies for her. Gotta give the girl every single chance she can possibly have. I came to that decision by once again, talking with people about things and listening to what they have to say. Please remember that this decision and my feelings on it are mine and mine alone. In no way do I want to influence anyone into doing anything. I want people to know what options there are out there and want people to try what they feel is the best thing for them. When I was diagnosed (10 years ago) I went to a RD who immediately put me on AP and then added MXT after 6 months of solo AP therapy. After a year there was no change in my RA except for more damage done to the finger, wrist and ankle joints. I was taken off of AP and MXT, put on Pred. and MXT again. After about 6 more months RA calmed down and in my lowly state of denial I went off all meds. Was able to function but still was having damage to my joints. I've been actively treated with other dmards and biologics for the last 3 years. Damage has slowed dramatically, pain and inflammation has lessened. Because AP didn't work for me doesn't mean that it doesn't work for others. I guess the point I'm trying to make is that there are RDs who prescribe AP as the first line drug of choice. I've talked with my current RD and he has patients on AP therapy. Right now it's not the drug of choice for me. Some of you may find that debatable but I'll believe my RD who treats with AP and the research that I've read. I have a friend on AP who's doing well. There are many RDs who prescibe PA and will work with you. In 10 years and 4 RDs, 3 of the 4 used AP therapy as part of the treatment plan for their patients. I only had one RD who flat out refused to even discuss AP. Keep asking and searching if you feel that's the treatment of choice for you. Sigh. Pip I think some of you need to get a life: how do even have time for all this? I gave up reading this thread on page 2. Sharing information is great, just stop trying to convert and to condemn others. It's a simple guide to follow and it all applies to all sides of any debate. We are all different. Many of us have more than one chronic illness to consider in choosing treatment. And, we are limited by our insurance (or lack of) and our doctor's recommendations: someone deemed an"uncooperative" patient can have difficulty getting medical care. So... these decisions are personal and complex, and no one has the right to judge another for their medical treatment. Laker [Quote=arriscolwell]Laker was speaking in general, I don't see where it was addressed to your "side" specifically [/QUOTE] That type of statement right there puts a divider right smack dab between AP and Traditional. I agree, Caprice. We should all be able to agree to disagree. Healthy, intelligent debates are welcomed. Trolling and rude behavior is not. Is this what you are getting at? Take care, Caprice. [/QUOTE]
Ok I want to say something. By what RA critria do you think AP should be suggested to someone? After reading only what all the AP'er's have posted, I have narrowed it down to it would not be a good treatment for me on the basis almost the same as Grammaskittles. Mine is because my RA is not under control, I already have exisiting damage, and if I am not on meds that semi-control my inflammation, I will have even more joint damage. For me when I suggest AP to someone a time ago. I only suggested it to them because they felt they were running out of options. I will not suggest AP to anyone who, IMO, cannot be without inflammation controlling meds for months at a time. As I have seen first hand, how inflammation has destroyed my body because I did not have meds to keep the inflammation under control. I might suggest it to someone who is just newly DXed and is not considered having moderate/severe RA, and only if they do not have bone damage. See, I felt really bad about hearing Brisen's story of how she stopped all of her meds to see if only AP would work for her. It made me upset. Because that is exactly the thing that should not happen, going off all your meds that were semi-controlling your RA. Semi-controlled is way better than really out of controll RA, let me tell you. I am not bashing anyone for going with AP, I am glad it has helped so many of you. But when you suggest it to someone you should only suggest it to a certain type of RA critiria. Like if they got RA after having a baby, or after a root canal, or they got bite by a tick, or they are running out of options. And slightly suggest it to someone who has family history of it, or might be genetic. I am not saying you cannot suggest it, who am I to decide who can post what. I am just saying that it really made me upset to hear Brisen say she stopped all of her meds, for something that probably will not work for her, (I know the other meds might not either, but by the way she talked her RD thought they were helping her), and now she has to try to get the meds to work again, which within that time is prossibly even more damage is being done. This RA is not really anything to mess around with, I know everyone says treatment is better this day and age, than before, but what good is the treatment if someone wants to go with something that is not actually proven to help? Just my opinion.
AP was suggested to me from several members on this sight, but it was ONLY a suggestion, and I was clearly instructed to research and learn everything there is to know about AP before making a decision. I never once felt it was pushed on me, just put out there as another treatment option. Yes, I know, but it still upset me. If you really look at it... there is no way to prevent cancer, just like there is no way to prevent RA. Oh and what if someone else takes the suggestion of going on AP, gets their RD to let them try it in conjunction with traditional, like you have, and decides to go off all traditional meds? It is just upsetting to me, and not much of anything upsets me. But everytime I read one of ya'll posts about what all AP is suppose to do and all these newbies we have joining the board and reading the board, and they are looking for a "fix" to have their "normal" life back, it just makes me have mixed emotions. I am glad there is another option out there, but it is kinda like the "adjust you diet" suggestion, it seems to me to be much more risky, that trying traditional meds. I guess it is just me and my way of thinking. I am one of those people ya'll do not like... the one who does not question the meds their RD gives them, and just takes them (well most times
In this day and age many people use the traditional meds to maintain inflammation control and wean off as AP kicks in. Gale is due for her "Ah-ha" moment - it usually comes about now. That's the 'oh, God, I just opened the milk jug" for me. Or for another woman it was the fact that she could comb her own hair for the first time in almost 2 years. Was there another time I couldn't open the milk? Yes, and I cried. But knowing if I hung on I'd open it again kept me going. That knowing, that "Ah-ha" moment is what keeps us going. Telling somebody it's something that might not work for her is heartless. We don't say that about the biologics (except for my jab at BeeBee/Anna and DAMN that felt good). As for level of criteria for informing somebody of the OPTION of AP - that should be up to the patient. In a perfect world all newly diagnosed people would get pamphlets like Karin got when she say her rheumy. Enbrel, Remicade, _________, and Mino. Let the patient decide. Because I've posted before. I was on a walker at night 4 months after diagnosis. Severe. AP doesn't work for severe - so the rheumies say. But it worked for me. Or what about lenght of time since diagnosis? I've seen 2 posts of people with RA 25+ years - and while most people have to drag themselves through years of AP to get back to health - those 2 were up and running painfree in a MONTH. Rare as heck, but it happened to them. Attitude, my dear, attitude - that's the ticket. It's hope in an little purple and orange pill I get from Canada. Pip Joonie - Don't make me start posting the cancer/Mino research I have. What the heck, I'm part way thru my BIG BOX of newspaper clippings. After this Pharma thread is over - it's coming! Pip Ok, so I guess that I will add my two sense even though right now I have sooooo much going on in my life that is threatening me getting under control at all. I read the post that turned into yelling at BeeBee(someone who has not posted since I have been on, but oh well she has her opinion, howbeit very strong) and then boom like lightning she was landblasted by another poster. I was very sad at that point and turned off the websight for the night. I cannot believe that something that was a valid question was turned into that. My take on the whole AP thing. I cannot do it, it would COST my life. I am allergic to most antibiotics, which also makes surpressing my immune system even more scary. So, I am thinking to myself I am dammed if I do and dammed if I don't. I am looking at a future that is not too great. So, while others have choices I DO NOT. Thank God that you all HAVE CHOICES and can debate. I have damage too, and a lot of it. I am getting an eye examination tomorrow to see how far my "pre-glacoma" is doing, and you are arguing about something that for me is NOT a choice. I never in a MILLION and a half years would have thought at 41, I would be losing something so precious to me, and after five months of treatment still be so out of control with my arthritis. Guys this is serious stuff no matter what treatment you use. Let's get back to helping one another and supporting one another 'cause right now I could do without all the drama. Sorry, just an honest answer. joonie - I understand what you mean when you say you can't prevent RA and you can't prevent cancer. But I've already HAD cancer, so it's more important for me to try and boost up my immune system, than it is for someone who might just be trying to avoid getting cancer. One thing is certain, I will never really know if every last little cancer cell was removed with surgery. Because of that, I need to keep my immune system inhanced, in the off chance that if there should be one stray cell and it decides to multiply, my body is prepared for the fight. Like I said, I went off my traditional meds because I decided to, NOT because it was suggested by any of the AP'ers. I am glad you are back on the traditional meds, Gale.
My MIL is a cancer survivor. She went thru all the chemo, raditation, and some other stuff. She has been in remission for 7 almost 8 years now. She does not worry about get cancer back, as she knows God will take care of her. She was at stage 3 in her cancer, almost to terminal. Since then she has not worried about her cancer, her dr worries more about her cancer than she does. That is why she does not go to her oncologist that much anymore. When he found out she had started going to school to become a nurse, he told her that the stress might be too much for her and she could come out of remission. She did not care, as she knew God was with her. Pip - I did not just say AP would not work for her, I am the glass half empty type of person, I also said that tradional meds might not work either. Heck, I did not even think Humira would work for me and I was in a way hoping it would not, because it was administered by a needle, but I have come to realize that my only options left in traditional meds is injections. *rolls eyes* Well, I have nothing more to say. I just wanted to post exactly what I posted and now I feel better, not too upset now.
Laker Since this is a forum for sharing information, I think many people might care about those 'buckets of studies'. But if one doesn't like reading about those studies, like you said, they can just turn the page. BTW..I love your name! My maiden name was Almann, so growing up, I was frequently referred to as Almond Joy! I wish there was an entire forum that was nothing but deep heated debate. I'd be in heaven.
I personally like for someone else to do the research and post the links. I'm too lazyOne of the best approaches to this disease to keep all of our options open
OK Here goes. I have tried all meds and I am no better off than I was 10 years ago.I have more joint damage and now have RA induced vasculitis. I have been allergic to lots , some meds have made me sicker than the RA itself. I know I might be the minority but it does make me sceptical and when I'm sitting in my rheumys office in so much pain that the tears are pouring down my face and my hubby is beside himself with frustration because my rheumy wont even talk to me about AP therapy then forgive me for hating conversations like this. There is a med for each one of us that will bring a cetain amount of relief, be it traditional or not. Each to their own.No one is wrong , no one is right. Honestly I skip over most of these discussions because I don't know enough about it to debate it with any intellegence. I will say one things though; Thanks to many here on this website over the last while I have begun to see another option that I didn't know about before. It's not really an option that I want to choose right now because I have had success with traditional meds like DMARDS & Biologics but I have seen over time that often options that work today may for one reason or another be taken away from you whether you like it or not. One day I might need access to these alternatives and I'll be happy to have information I've found here. I do agree though that this subject gets a lot of attention and certainly ruffles some feathers. We haven't had a thread this long since Roxy's husband left her and she had a stroke. Like it or not....the debate gets people interested in the subject and that's not entirelly bad is it? Whether AP is an option you're considering today or it's one you might want to keep in your back pocket for later it's a subject that can be important to us all at some point. Never rule anything out I always say. Oh, Pin! Hugs, hugs, hugs. These guys can't see with the blinders on. Go to the Roadback and ask for an AP doc in your state. I went thru what you're saying. It's hell. Hugs. Pip Oh, Pin cushion: I am SO sorry you are in so much pain and have not gotten relief for 10 years! You poor thing. I know there are AP doctors in UK, but I don't know how that works with your medical plans there. I know you probably have a doctor you have to see. Is there any getting around that? I agree we are all different and we will all take different paths for our RA. No one is right or wrong, like you said. We all have choices to make. Take care. Hope you feel better. Hugs, Karin Gimpy - I guess I might be a fence sitter. To me my way of thinking is... if it works it works, if it don't it don't. My attitude toward this disease is totally different than that of someone who has fell ill with RA. Me and Katie seem to have the same thoughts about AP & traditional meds. I have been failed by meds my whole life, now that I know that the pain I had when I was a kid while taking baby asprin, what an RD that DXed me told my mom to give me, did not cut the pain... there is some sort of pessimistic attitude you have toward meds. I do not think any med my RD starts me on will work, I have no hope that it will work. I am surprised when they do work. Like Humira, RD told me 3 months I should feel a difference and be able to move around again and have less swelling. I thought to myself... "I gave into taking injections and watch this sh*t not work." The very next day my swelling had went down, I was able to move, was not so tired, and I felt better. I could see the difference. But since then Humira has not had the same effect after being off and on it so much. So, here I go back to being pessimistic about meds again. Pred, never really worked good at controlling or even getting rid of my inflammation, but it was good at helping me with my pain, not sure how that works. I am still pessimistic about any type of med. I know I probably have more wrong with me than just JRA, but I do not complain about it as I do not care to take more meds that might not work for me or even work for a little time, I would rather stick it out until it literally drains me mentally. I done that with pain pills... did not want to take them... everyone on the board at the time thought I was bashing pain meds, but I was just just stating that they were not for me, and that they made me go to sleep and I have kids to tend to. I guess growing up with this disease has made me not so optimistic or the glass half empty type of person. I just go with the flow, until it involves needles, but I have converted. I did not care that my RD had told me repeatedly that Arava can cause cancer. I just took it because it was suppose to help me, it did, but the side effects were too much for me to handle mentally. Nothing like having JRA all of your life, being the outcast at school, and then when you are in adulthood... you lose your hair so bad that people that you were a cancer patient or went to sleep at 6pm every night on the dot because you could not stand to stay awake and all of this while you are suppose to be living it up as a 20 year old. I am not afraid to die if it is going to be quick, short, and sweet. I just want to be pain-free just once, and I want to die in as little pain as I can. I do not like to get into cars, as I am afraid one day someone is going to hit my side of the car, and I am not going to die instantly, but I will be in even more pain. Not the way I want to go... in pain. I want to crossover to the other side in little to no pain. That is my only wish for when I die. Ok... I strayed off a little there, just felt I needed to get that out. Anyways... I hope the best for everyone no matter what their decision in treatment is. Gimpy- we Cant choose our Doctor in the UK
This is how bad it is. My cousin has a lot of health problems and she was under the same G.P. for years who has all her meds under control, she moved house ( about half a mile) from her old house and had to be assigned a new doctor as the old one was now out of area.
I have been seeing my rheumy for a while and I dont like him at all, he is so ignorant and rude but until the choose and book system came in I had no choice but to see him. This is on the NHS. I tried to go private with a med inurance company but as i have an exisiting med condition they wouldnt take me unless i paid a fortune to them. With the new system I am seeing a new and reccomended Rheumy next month.
I think it's just that, growing up, everyone does it for you. They think they know, but they have no idea. You keep quiet about SO MUCH that after a while you develop this overwhelming "DEAL WITH IT!" voice that lives with you. Constantly. It's hard to believe that someones going to listen to you, or that a drug is going to help. I'm at work, and I can't think clear enough to explain it any more than that. Wait 'till I'm home, and I'll try to explain it better. Hope floats. Pip Don't mean to hijack the thread... Saying that, I just want to let Kelsaysmommy and Katie know that I live in the very southwestern tip of Chicago, right on the border with the suburbs. My ins. is Humana Gold Plus, and when I questioned my PCP about a change, as the contract said I could, he said there were no others in the network that I'm in - which I believe is Christ/Advocate. Suggestions are always welcome!
Also, my co-pay for a specialist in my network is . Even that is a bit difficult for me to handle with all my other expenses.
I did my paramedic training at Christ Hospital many moons ago. I can't believe there are no other rheumy's in the area. That really bites. I know there are other RDs in the area - just not under my insurance.
Do you still live in the Chicago area, Grammaskittles?
Lynn
However, as we discredit her misinformation, other people may learn
some things they didn't know, so the debate still serves a purpose. But
I agree that any debate will get tedious if even one party decides that
"winning" is sticking to their misinformation. I'm all for debate when
it is both sides presenting legitimate information, but when someone
just won't let any new information in and just wants to stubbornly
stick to gross, unprovable misinformation you can't blame people for
feeling some frustration.
Politics, anyone?
: So many of you have responded to "AP in the
: news", thanks. We have been trying to think
: of ways to let people know about ap. Pip said we
: need to start from the bottom up, and I agree.
: We're the bottom, we are our own best
: advertisement. Like many of you, I am not healthy
: enough to start a big campaign, lobby Wa., etc.
: But we can do little things. I've been
: brainstorming all week, and going a little
: bonkers, but here are a few of my ideas. I did
: some research on public domain websites. Under
: "arthritis" in wikipedia, ap therapy is
: mentioned , tho not very favorably. I also tried
: youtube, and guess what, there are several videos
: from docs and patients talking about their
: treatments for arthritis. Anyone own a webcam?,
: feel like sharing your story on youtube? The most
: viewed videos are not very long, 2-3 mins. What
: if we made t-shirts with some kind of logo about
: RBF, or bought those colored gel bracelets that
: are in fad right now, anything that would make
: people ask,"What's that for?" Does
: anyone work or live at a place where flyers could
: be placed on a community bulletin board, or would
: your doc let you place flyers in his/her office?
: That's all I have for now. Pip has also mentioned
: getting together to chat off site, any ideas
: there? I'm still waiting to hear back from Trisha
: Torrey about the blog she is supposed to be
: writing, I hope she hasn't put this topic on the
: back burner. I appreciate any help or ideas.
: linda
Write a book and call it True Testimoials for a proven, too long hidden treatment for arthritis, just thinking, for people who don't have the web to turn to. e
I read somewhere that the New Arthritis Breakthrough is the #1 selling
health book (but I can't remember if that was just on Amazon or
something). I have no idea if that's true, but it IS a great read!
How many of us were told about it in non-judgmental terms by OTHERS? Be careful how you word yourself, and how strongly you advocate for something. There is a thin line between advocation and salesmanship. Also, even in wording it carefully, people are still going to misinterpret you. It's human nature and right to interpret how we like, and you will never be able to change that. Sometimes the best course of action is none at all.
I'm not at all saying that you guys have been shoving this down our throats...........not all the time anyway. I'm just showing you another side of the story, another point of view. I don't claim to know much of anything about AP, but then again, from what I've seen of it I don't *care* to know that much about it.
And yes, that is due DIRECTLY to the way it's been presented.
treatment.
I don't even think thats ever been the issue Gimpy. Don't dig up something that hasn't even been pointed out.
Why did you delete your comment to me? Because I didn't respond the way you expected?
No, I deleted it because it was rude---I hadn't even read your response yet,
nor did I know you had read it. I post and immediately delete a lot.
But since you bring it up, I don't believe you would reject a therapy because
of some stangers not following what you think is appropriate posting
behaviour. I think you said that to make your point. If that really would be
your reason for rejecting any kind of therapy then that's foolish.
And I didn't dig that up, for crying out loud! Laker just made a comment
about it! And if you hate these kinds of discussions, then don't get involved.
Seems obvious.Thank you for asking that question gogo. I've only been a member here for a couple of months, but in that time I have seen nothing but encouragement from the AP'ers regarding treatment choices. Yes, we like to talk about AP, but I have never seen any of us condem another member's traditional treatment. There have however, been a few people from AF that only come here occasionally to condem AP. Case in point, BeeBee.
I haven't gotten my impression of AP solely from you folks here so you might want to get off that horse now. I make my decision on a lot of things, one of them being the severity in which AP seems to be jammed down everyones throat. It's like listening to Jerry Fawell. Gag.
I never said I hate these kind of discussions.
Thank you, Brisen...that was my point exactly, however poorly presented."Laker was speaking in general, I don't see where it was addressed to your
"side" specifically that you've been condemning others. Guilty conscious
[sic]?"
No, not a "guilty conscience", since I've never condemned anyone's
treatment choice, ever. In fact, I like to think I'm pretty supportive about
people's choices (something you might want to consider in the future). I also
recognise that someday I may be making the same choices so I like to see
how people are doing, and I hope, on some less personal level, that
whatever treatments they choose it will work out great for them.
Sorry if I got something started. My post was written at about 3AM my time and I might not have explained myself well. Let me try again. I find the information provided here at AI great. I like the exchange. What I have noticed lately is the OT debates about treatment options that do not jive with the post. It is a healthy debate but sometimes the debate takes over the post and I feel that the OP is not getting the support for his/her subject because the original topic is lost. I think those debates belong in another thread, not taking away from adddressing the topic and supporting the OP of the thread. I just feel the debate should be spun off into another thread so those who don't want to read can choose not to. It would also let the OP read responses to their topic, and not have it get completely lost on a whole different subject. Hope I explained myself better.
Exactly! [QUOTE=now & then] I<span style="font-weight: bold;">t's very, very basic. Don't like it? Don't read it! </span>
[/QUOTE]
That is the problem. I'm reading something that I want to read and the thread has been hijacked. "That type of statement right there puts a divider right smack dab between AP and Traditional."
No, this one does:
"Show me one post where an AP advocate condemns someone elses
treatment.
"
Do you think a NON-stop debate of the best medical protocol is stress relieving??????
And really who cares about the buckets of studies from this or that. Each person is capable of chosing their own reading material and/or doing their own research.
If the subject makes you angry then just turn the page....
This seems so OC, my way kind of running in a circle.
Try Neutral
and mix traditional with non traditional medicines. I see too many members
resistent to one or the other. What happens if all of a sudden, you no longer
have access to your oxycontin and MTX? Do you have a plan B? I bet not.
That is why it is so important to look at all the options available to you so
that in the future, if something were to change (and it can), you have a fall
back plan.
This website is easily understood.
http://immunedisorders.homestead.com/autoimmune.html
they are doing! It sounds like you just don't believe it works. You might as
well have the same worries about mtx not working and them ending up
with damage. Any drug regime might or might not work. And it's perfectly
acceptable for them to use prednisone and other anti-inflammatories
while on AP to mitigate damage. I do know what you mean, though.
Whenever I tell anyone about AP I always urge them to get super-well
informed so they know what they're doing before they do it. But think: If
someone really really believes in AP, they probably have the same lament
and worry when someone chooses the immunesuppressant route. I mean,
it's not a hocus-pocus snake oil thing. It's been clinically proven and it's
very slowly gaining more acceptance.
You might be interested in the story of H. Pylori.
http://
en.wikipedia.org/wiki/Helicobacter_pylori
(haha---that has a great ring to it "The Story of H. Pylori"---I feel a novel
coming on!)
Just read the History part. This wikipedia entry kind of downplays it, but
this discovery was met with VIGOROUS and RIGOROUS resistance by the
global medical community.
Believe it or not, I'm still a fence sitter on what's the better route. I talk a
lot about AP because I read a lot about it and also I'm a bit resentful I
wasn't told about it at my Dr's office, but I believe there's a need for both
conventional and new approaches to RA. I'm a strong believer in people
making their own choices and I think it's unethical that people aren't
informed about it as an option. Now that I know more about the politics
and general lack of clinical experience in it most docs are dealing with I
understand why it is the way it is better, but I still think people should
know!PS....ppppst, Pip! Pin Cushion is in the UK!
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