Venting – had my wrist slapped on another board

[DianeWI]

Hi Lynnie,

So you got a little slapped around did ya???:roll-laugh:    I got completely ousted off of a board with no warning for doing the same thing.;)   Oh well.  I really tried to help them too but to no avail.:headbang:     I'm so thankful that we have this board to vent and share.

I wonder what they are afraid of?  If someone would have shared the AP story with me, I would have taken that shred of hope and run with it.:blush:

I feel badly that we can't reach some of the close-minded hurting people.:crying:

Hugs,

Diane

[Manda]

[user=134]Rosemary Perth Aust.[/user] wrote:

…You have lots of friends here and in Australia I am sure.

Count me in as one!

I really think some people just don't want to know.. Maybe they've given up after their diagnosis. It's a shame, but all we can do is give the information we have. If only one person takes it in and does something about it, then it's worth it. Now, if only my Mother-in-law would consider the information I've given her..

[Anonymous]

Hi all,

 mainly addressed to Lynnie

i have been popping in and out of roadback lately to see if i can take on board alot of AP info you have all talked of over in the IPRS,

you seem to have so much knowledge of every tiny detail of your illness's, for me i have never had such information from any Dr's i have been under over the last 23 or so years of my palindromic rhuematism, all i was told 20 odd years ago was i had PR and that was it….put on many drugs and never told anything about them….i have started to take onboard a lot of interesting facts from here and will do so even more over the coming weeks or even months years……. still dont think its the road for me as yet….. im not sure the Dr's here in the UK would give us as much detailed info as you have either in the USA OR Austrailia? i managed to get some info last year when i had a test for something or other and asked the practise nurse as we had been dealing with my weight problem for years if she could check out bloods for the PR….i was told some of the results but was offered no explanation as to what they meant… i only found out stuff from the IPRS……my results last checked out sept 06 ESR24 The nurse told me it should be 0-15 range….  CRP 8 meant to be 5?…..never followed up……this is how the NHS works here….i was told it was the early start of RA this was 20 odd years ago

one thing i would like to say Lynnie “slapped your wrist” is so not true…..a new member had posted in the new member section…you then came in and said a little then sent her a PM which you thought you should tell her in the message body then the very next message you were advertising this site…..all i said was “could you not have put that in the pm” this was not censorship just a friendly question….am sure you have seen postings of mine before and im not an agressive type and i was a little taken aback with your reply, which i wont post here…… i then realised the original post had been moved to the AP thread so i then came back and publically apologised…… my meaning was we are just saying hello to a newcomer at that stage and further chat should be in the appropriate area…….

i thought all was well after this and then i find you have sent a complaint to the forum owner……..

again i say im sorry Lynnie i didnt mean to come across as rude…….

thanks all xx

[lynnie_sydney]

Leisa – welcome. We are a pretty positive and forward looking bunch here and we tend to focus on looking for answers. We all know how hard that can be, especially as each of us is an individual with individual responses – what works for some doesnt always work in exactly the same way for others. But we help each other, wherever possible, to find those answers by sharing what we've experienced, learned and are still learning.   

You have obviously now been able to find out a great deal of information about your condition from the other board, which is great. In terms of AP (and some more general information too) there is a wealth of incredibly readable introductory material that you can access from the main page on this site. Just click on the various items in the drop-down menus in the grey bar at the top of the Home Page. (As a fellow PRA person, you may also be interested in my 20 year history and testimonial that you can access from there. I found that testimonials were a very uplifting thing to read when I was new to this and very unsure). You may also want to visit http://www.rheumaticsupport.net and http://www.rheumatic.org – both are support sites for people with rheumatic diseases and using/ considering using antibiotic therapy. They also have good information and slightly different board formats. And of course people here will be happy to help you wherever possible.  

Thank you for your gracious – and public – apology which is graciously (I hope) accepted. I'm sure that you now want to focus on the main game for us all – starting on a road towards getting well. Best to you. Lynnie   

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[katie]

 I'm from the other board in question, lol.  We seem to be back on track now, thank heavens! 

You know, we're all people.  We aren't sheep that  follow, we aren't horses that can be led but won't drink. Our minds aren't narrow because we don't do what someone else does, and your minds aren't narrow because you don't do what we do. 

 We're people on our own paths.  Some of us stick to the highway, some drive onto new territory and some feel that a higher authority is mapping for us.   When you've laid a path for someone and they don't follow, it's nothing personal against you.  In fact, it isn't about you at all.  They NEED to find their own way, just as you do. 

If they don't listen, it's about their place on their path and has nothing to do with you.  And if you can't understand why they don't listen to you, that really has nothing to do with them, and everything to do with yourself.  

Sorry if that sounds a little zen-ish.   Forums are ruined when people feel their paths aren't respected by people who also feel, that their paths aren't respected.  The fustration saps our energy, and we need our energy to go toward the positive and toward healing.

Peace to us all, and blessings as you follow your paths.

[Pip]

Good Lord – I think I've died and gone to heaven!  Not 1!  Not 2!  But three of the IPRS mainstays on the Roadback at one time!  I think I'll faint!

Karin – good to see you're looking into this. 

Leisa – we don't advertise this site, as much as it seems to appear that way sometimes.  This is where one can mostly find information and watch other people working their way back to health.  In a perfect world, there would be options like this on all autoimmune disease boards, people offering what they've learned and people taking what they can use and discarding what they can't/don't want to use.  I post on about 6 boards regularly – haven't been here since Feb or March, so says my PM box – and I can tell you – people don't abandon their home boards – their home boards abandon them.  The healing we need to go thru is similar in a lot of ways (herxing, learning about supplements, vitamins and whatnot) but the idiosyncracies of each particular illness is particular to that disease.  The Sclero people have certain things RA people don't have to deal with.  Same for the Lupus people.  The Palindromic people have 'lurkers' which make most RA peeps go “???”.  We need our home boards more than ever when we find AP – can you not imagine what it feels like when we are 'hand slapped' when trying to help?

And as an aside, as I'm sure you don't know, we don't like feeling like we're in some 'AP ghetto' on the traditional boards.  I've seen one board that actually attemped to have us lable every post as AP – or if it was research that was contrary to the biologics – with the word 'Scary' in the title.  No, I am not kidding.  Then there was one attempt to hide all the research another science type was posting in this 'black hole' where it could never be found.  And guess what….this person posting the research wasn't an APer.  Imagine that. 

So, there is a definite resistance to the thought that we put in to our posts. 

Katie – Glad you could make us!  You had me in agreement up until you posted “And if you can't understand why they don't listen to you, that really has nothing to do with them, and everything to do with yourself.”  No, I respectfully disagree.  Yes, we all have different paths.  And we all make decisions on which path to pursue. 

Think of it this way – you're on a road trip.  And you stop at the garage and ask for directions and to buy a map.  So you head out into the country (as you're on a wilderness trek), and all of a sudden you realize that part of the map the station worker gave you is missing a huge piece of the puzzle…er…map. 

We need info – all the info – to make a decision to turn left and go on the Yellow Brick Road…or to turn right and end up in a broken down vehicle in the middle of the desert.  Unless we have the ENTIRE map…we do not have enough information to make an informed decision. 

What you don't understand that while RA has a higher mortality rate than the rest of the population, and these diseases are horrible in that they rob us of who we were, many of these diseases are 'fatal'.  You've not seen the posts here I've seen, of people who perfered to die instead of try this.  Why?  Is it like some of the posts?  Horse to water?  Closed minded?  Or some bizarre faith in the system? 

Something in what we say offends the core belief system we are trying to reach across. 

My question is…why is that?  How does giving a person other options and access to cutting edge research negate a that person?  How does that negate another board?  A person who is secure in what is happening to their body and their choices is secure in the road they choose.  A person who is insecure, and questions that road…well, in my experience, they're the ones that react…vehemently…to the message of other options.

Hugs and welcome!

Pip

[SusanSD]

I agree with Katie and Pip. We have to forge our own paths to recovery – or not.

My friend who does research on osteoarthritis commented on how some people want to talk about whole history of how they got sick and what they can't do or where it hurts. Others have progressed to the Now-I-know-what-it-is-what-do-I-do-about-it phase.

Pip once helped me problem-solve how to get my scleroderma story on International Scleroderma Network's website. They refused it saying I had mentioned unproven treatments like Minocin. I was appalled that here they were saying share your story about diffuse scleroderma so others won't feel so alone, and then they were censoring mine, saying it's their policy to not print anything unproven! Hello! THere is nothing proven for the treatment of scleroderma (in their eyes). In the end, I acquiesced and dropped Minocin, saying instead that I was taking new medication. The point I wanted to make in the story was that I was improving. I figured that would get attention. Now I'll get occasional emails saying they saw my story and I email them the true story and mention Road Back Foundation. Even if I tell it to only five people, it is worth it.

I don't see the problem in letting people know publicly in a forum about a treatment. I've seen lots of herbal supplements mentioned but I don't rush to buy everyone of them. I do take the time to look up certain ones that may be helpful, and appreciate these tips because certainly my doctor is not mentioning them.

If we are driving on the road and see a billboard for food, hotel, drug, …… should we take offense? I say, ignore what doesn't interest you, but let there be free speech.

I agree with Katie in the sense that we shouldn't get too upset if someone we know chooses not to go on AP. We can't change them. All we can do is offer info for those who want it, and educate others about the potential about AP.

 I personally believe some people prefer the “being ill” role because they like the attention. But for those who have a life or loved ones that they desparately want to live for, they will fight the illness.

[KAnderson]

Pip – ive watched this site for some time now. 😉

[Cheryl F]

Susan:

I didn't know that you were able to modify your story and get it posted in the ISDN site.  I remember talking to you the day they turned you down, you were beside yourself, glad you found a way around their bureaucracy.  Maybe I will submit Jess' story too! 

In reading these posts about the “wrist slapping” I can't help but to take pride in the way that we all conduct ourselves on this board.  Yes there are heated debates sometimes (can you spell Vit D? LOL), but there is little if any censorship of ideas or treatments, even though the focus of this forum is about ONE SPECIFIC TREATMENT!  It amazes me that board participants (am I am not even talking about the one mentioned throughout this thread) from forums that are about the disease (not the treatment) are so upset when AP is mentioned.  I participate on a Scleroderma specific BBoard and I have been met with great hostility when mentioning AP.  I have NEVER said that anyone “SHOULD DO AP” I have only suggested that they read the book and consider it for themselves, I describe Jess experience and recovery, and people have come un-glued and really, really hostile.  Some members have requested that AP not be allowed to be mentioned.

On the other hand, even though this forum is treatment specific in its focus and not disease specific, we have open discussions of some pretty interesting treatment considerations, and on this board, you read, consider and move on if it is not for you.  Our participants don't seem to feel the need to not allow everyone to share their experiences.  I have marvelled at this dynamic of the RBF BBoard for quite a while now.  All I know is that the folks who end up having the perseverance to learn about and obtain AP treatment, and then stick with it are the most amazing group of people I have ever had the pleasure to encounter.  I thank you all. 

Cheryl

[katie]

Pip, re: my statement

“If they don't listen, it's about their place on their path and has nothing to do with you.  And if you can't understand why they don't listen to you, that really has nothing to do with them, and everything to do with yourself.”  

Perhaps I should have said, “If they listen to you and don't do what you hope they will do, it has nothing to do with you”. 

 It has to do with where they are on their path in life and it has nothing to do with the way you presented your info or with you personally, so you don't need to feel bad about it.   In fact, their decision not to listen to you may be because they are following a Healer that no human can fathom.  Who knows?  But don't take it personally.

If you have told someone of the help available to them, and they don't do what you hoped they would, you are responsible for coming to terms with that.  You can upset yourself forever, you can hound them until they avoid you, you can place them in the hands of a higher power, you can accept differences, etc.   You have to deal with that yourself, and you can't blame the other person if you can't find your peace.

This whole thing started because of differences on the forum.  Mistakes were made, apologies given and accepted, I'm very pleased.  This seemed like a good time to foster understanding, and I hope I've done a little of that.  Forums can quickly go downhill when people feel the path they've chosen, (or feel guided to follow), isn't respected.  Our forum doesn't have one main focus like you do, our paths range all over the place and we're never going to be united like you are.  For us,  preserving our differences IS how we stay together.

Best wishes, you have a wonderful site!

 

 

 

 

 

[Pip]

“If they listen to you and don't do what you hope they will do, it has nothing to do with you”. 

Yes, I agree one hundred percent.  Unfortunately, that's my problem with this whole situation and one I battle with everyday.  The pain level with PRA, the special circimstances where we 'look normal' to MD's when we're dying in pain yet have little or no inflammation so we get told 'here, have an antidepressant' etc – I have to work on not feeling like I'm not doing enough to reach out to us.  I don't 'feel' Palindromic anymore – I want that for everybody – and everybody has to do what they need to heal.

I do think we can have differences on non-AP boards – I've been on some that have evolved to the point were everybody helps the other with whatever they need – where non-APers help the tradtional meds types and the traditional meds people help the APers.  It can be done.  It's just about respect for the various options of healing. 

Hugs,

Pip

 

[Maz]

[user=448]katie[/user] wrote:

This seemed like a good time to foster understanding, and I hope I've done a little of that.  Forums can quickly go downhill when people feel the path they've chosen, or feel guided to follow, isn't respected.  I'd like to break that cycle.  I wish you all success on your way.
 

Thank you, Katie, and I wish you much success on your healing path, too!  I'd just like to second everyone's welcomes to the IPRS gang upon your recent arrival to the RBF BB. 😀 You're most welcome to here, along with Karin and Liesa, and to just listen in and learn more about the antibiotic protocol(s) (AP), to ask questions about it, or to share anything you would like to about what you've learned along the way on your own unique treatment paths.

Katie, I loved your comment above and also feel as you do that it's important to foster understanding. T'was ever thus…this is a truth that applies to all things in life and not just a treatment option that we may or may not choose. Ultimately, I think fostering understanding is just about being heard and validated, no matter what we may decide on our life's path. 

As you've probably had a chance to read on the main site by now, RBF's purpose is to keep Dr Brown's legacy of the “infectious theory” alive and it may suit one where it may not another. That being said, however, as an approved ACR (for off label use) DMARD,  there's really nothing mysterious about minocycline's availability for use in the field of rheumatology today. Unfortunately, however, it remains a little known option for many patients and RBF just aims to bring it out into the light, as a perfectly viable treatment. It's also a relatively innocuous drug, when compared to the drugs used today, being prescribed long term to teenagers with acne. It's a great shame, therefore, when patients ask their doctors to try this treatment option that they are told it's worthless and sometimes even feel their efforts to request this option are ridiculed, when countless people have used antibiotic therapy with great results.

As Cheryl said, conversation isn't limited or restricted to just AP here, but to any additional therapies, allopathic or otherwise, that others are researching or have used and found beneficial (and sometimes otherwise).  It's the main reason I have made RBF my “home” and everone here, both new and old, feels like “extended family.” We really do get quite an education here with all the information that flows through. Of course, all “families” can be dysfunctional at times…that's a given, because we are all only human :roll-laugh: and physical pain can sure make us grumpy sometimes :headbang:…but as Cheryl also said, it's a very open BB where people should expect not to feel judged for differing opinions. I often think how wonderful it is that when one of us is having a good vent on a bad hair day, we are all just able to equate with that and hold space for that person. The BB only asks that everyone respect this and one another… as you so wisely said, Katie :dude:, in the spirit of fostering understanding.

Welcome!

Peace, Maz

 

[John McDonald]

…that it's important to foster understanding…[get along, etc]

Now if we get all squishy and sweet here how am I gonna fight with Richie about his absurd “Splitter” viewpoint.:dude:  Splitter! Environmental Causer!:dude:

[Maz]

John….now you know we're all completely disarmed by your “lumpy” rabble-rousing charms, but I guess you're just gonna have to be one of the exceptions to the rule…along with good ol' “splittin” Richie and we'll just grin and hold space (and ohmmm with our fingers in our ears) the odd emotional herx from you men, too. 😉 What a hoot!

Peace, Maz

[richie]

Hi John

Dont fret –I wont let it get too squishy or squirmy or too nice –I cant handle too much of that !!!!!!!!!!!:)–Incidentally the organization IPRS gets me very nervous –sounds too much like the IRS !!!!

Richie

[Author]

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