this bulletin board is no longer user friendly

[mikat828]

Hi

I have been on and off this site for six years.  I used to come here all the time.  Now, checking back, I can see it has changed immensely and I feel is not very well done anymore.  I used to find it easy to read and respond to all the posts, but not anymore.  In addition, the whole site is hard to navigate.  Considering many people who come here are very sick, I think this site should be very user friendly and easy to find your way around.  I was just going to refer someone to this site, but frankly, I think it is discouraging enough that she just won't bother trying to get familar with it.  Please. please, change it back or make it better to use!

Kathy

[DianeWI]

Hi Kathy,

It takes getting used to.  Many support boards are set up like this.  Prior to this board, there was a lot of spam hitting it.  Now, they can't.  IMO, it was worth the change.  I absolutely detest spam.  That to me, was a major aggravation.   The old way was a little easier to view the posts, but this works too…and no crap to shuffle through first.

Diane/WI

[Maz]

Hi Kathy,

Really sorry you're finding the new BB design hard to navigate. I can understand that, because it can be a bit like starting to watch a television show in the middle of series. It's confusing until you get the hang of the storyline.

I think we all missed the original bulletin board design, but unfortunately it was really old software and didn't have any sort of protection from internet spammers. As a result, the old board was being bombarded by drug and porn spam on a daily basis, which was a real headache for the volunteers who were having to spend hours upon hours going through it all to delete it, keeping them from their volunteer roles. In the end, it became an impossible task and was felt it would be a real turn-off for any newcomers coming to the board. It was offensive enough for those who were regulars.

John has designed this new board to be as simple as possible. As you sign on, you should see a General Discussion thread and a Personal Histories and Progress Thread.  The former is for user comments/questions/support. The latter is a new idea to enable BB users to journal their individual progress and to enable others to see how they're doing, what has worked, what hasn't worked and what they've learned along the way…that kind of thing.

After clicking on the General Discussion button, there are three permanent threads that remain at the top of the board…one with a board update, one with information for new users about how to contact RBF for physician referrals and one with the board guidelines. The threads below these are the daily discussion threads as you would  have seen them on the original board, in dated order, with the most recent at the top. However, the benefit of this new software is that old postss don't get lost into the archive plenum. If users want to go back through the pages of previous threads and make a reply, it brings that whole thread back to the top again. With thread headings clearly visible, it's also easier to pick and choose what may be of interest, rather than wading through every post.

Another benefit of this new board is that there is a member list you can browse as well as a private message function. In the past, one would have to ask other members for email addresses to communicate privately. Now, there is no need for this and you only have to click on a member name to send them a message. It's also kind of nice when members add a photo of themselves or an avatar, what part of the world they're in, etc….these help to jog the memory when chatting with others and it's just nice to see familar faces.

Your comments are well noted and I think we all understand how it can be daunting when visiting for the first time, especially when you're not used to the software. When the changeover occurred in February, we all had to make adjustments and get used to it. However, if you stick around and just briefly check in for a few days and watch the first page as posts come in, it might help. It took me a few days to get familarized with it all, as well, but once acquainted with the new format, the advantages over the old board became much easier to appreciate.  It's also really not an unusual software to find on the web these days and many other support boards are using this format….rheumaticsupport.net and the Marshall Protocol, for instance. However, John really has gone all out to keep it as simple and user-friendly as possible. And, thank goodness all that spam is a thing of the past! 😉

Do hope you decide to stick around and share your journey with us. You've been on AP a long time and I'm sure we could all learn a thing or two from your experience.

Peace, Maz

 

 

 

[superperroRA]

Can you turn on new features for the bb?
a feature I would like:
I would like all folders (i.e., original messages) to be open, so that I could see, up front, without having to delve in, a line for every reply message.

[Robin K]

I just want to say I really like the way this board is organised.

[mikat828]

Thanks for the quick reply.  I really appreciate it.  I will have to spend some time navigating the site and getting reused to it.  It was just so easy to pick up where I left off and perhaps I was just used to being able to “pop” in. 

I will update everyone.  I was diagnosed with fms twenty years ago, and then about seven years ago got very sick and thought I was dying.  I found this site on my own—-actually God led me here.  I was developing many symptoms of lupus and scleroderma and I knew from day one that the ap was helping me dramatically. 

I have done many many things in the last six years, but ap was probably the biggest piece of the puzzle.  I reacted very strongly to any type of detox as well as to ap.  Because of this, I never worked up past 25mg of doxy (and at time mino) three times a week.  But this worked for me.  As well as clindamycin occasionally.  I did get the Clindy IV's in Iowa at the start of my treatment.  I was diagnosed with both mycoplasma fermantans and hominus. 

I also had saline breast implants which I found can also make you very sick.  I got those out in 2001.  There is a whole other site for people sick with saline or silicone implants that helps people on the “road back”.  I had fms before the implants, and believe the implants plus my husband's untimely death pushed me over the edge with illness.  I know that we have had people from the saline site come over here and then try antibiotic protocol, and I continue to recommend this site. 

I totally believe Dr. Brown's assertions about mycoplasma, and I am sure other pathogens are at the root of many if not all autoimmune diseases, including probably many cancers.  I love this site and it was people like Marge and Ritchie who saved my life. 

Like some of you, I have found that antibiotic therapy goes through phases where it is less effective and then we have to mix things up!  I also believe that d'lenolate (East Park Research's olive leaf extract) and oil of oregano have been good adjuncts as they also kill many pathogens.  Also organic coconut oil.  

I just want to say that this site is doing a great service to people.  Whenever I mention it, I get this reply,”my doctor won't prescribe it, they say it does'nt work.”  It so frustrates me that many people take whatever their doctor has “heard” as gospel.  I find that it is people who take matters into their own hands, and keep trying to find the way to get better who eventually do. 

Lynne, you come to mind as your never give up attitude has taken you very far!  You were one of my mentors as I saw how proactive you were and how you kept trying until you found the combo that worked well for you!

I went from laying around alot, and being constantly brain fogged to have a very active life.  I had to quit my job six years ago, but I now work, and we just got back from disney world where I “ran” through 4 parks in one day–from 9am-1am!  

  I still gets lots of fasciculations and tendon tightening and that is what I am focused on now.  If anyone has suggestions, I would love to hear them.  They do not keep me from living a full life, but from enjoying it as much as I otherwise might.  So I will keep seeking to get over this hump also. 

I will monitor this site more often, and again thanks for replying so quickly!  I must say I was impressed that I got an email telling me there were replies.  That is awesome!

Kathy 

 

[Maz]

Kathy, thanks so much for re-sharing your story with us and so uplifting to hear you're doing so much better. I look forward to the day when I can also run through Disney again! :roll-laugh:

If you want to add what you've already written above to the Progress Threads and start your own progress journaling, please do. These are great, because when someone wants to know your story and just what you've done to get well, it saves time to refer them to your link rather than retyping it all out. Also, you can add to it as time goes by and really see how far you've come! Hopefully, they'll also be the 'meat' of future testmonials on the site.

The old timers are still here and checking in, you'll be pleased to hear. In fact, none of us knew what a dashing guy Richie truly is – looks the spitting image of George Clooney! :dude:

Looking forward to reading more of your posts as time goes by and hope it won't take long till this new board feels as comfortable to use as the old one…or better even…and and please tell your friend she is very welcome to join. If she has any trouble with the board, one of us can help her to navigate it. 

Peace, Maz

[Maz]

[user=26]superperro(RA)[/user] wrote:

I would like all folders (i.e., original messages) to be open, so that I could see, up front, without having to delve in, a line for every reply message.

Hi Superperro,

I think John is the only one who would know if this is possible. Although, I believe he's pretty tied up with work for the next couple of weeks, so if you don't get a response on this, have another go posting the question again when you see him back on the BB. 😉

Hope all is well your way!

Peace, Maz

[Admin]

I would like all folders (i.e., original messages) to be open

I loved that about the old software, but that software was custom written by someone long gone from us now. We couldn't even maintain or modify it which is why it was so susceptible to spam and porn. It just wasn't made for a 21st century internet. This software is made by WoWBB.  Feel free to click the link and look over their promotional and support stuff. The beauty of this software is that it is easy to setup and maintain. It takes very few volunteer hours and once we decided to go online with it, we had it running in a day or so. It is reliable and inexpensive software and it seems to be immune to spam and robots, knock on wood. One thing I hated about the old software was the way the messages aged and disappeared. I had to look deep down the page sometimes to see if anyone had responded. This software automatically pops new stuff right to the top, no matter how old the thread is. I like that feature.

We are always open to volunteers that are into the web-head stuff.

We hope you find the pages useful in any case.

[caroline]

Tell your friend to bookmark the Bulletin Board –make it easy to get to that site in the future. Emailing that link or http address to your friend can help after your friend signs up. Starting by reading the Scammel book, Arthritis Breakthrough, might inform your friend too.

New Member,
Caroline

[Lynne G.SD]

Hey Kathy;
     I almost went right by your posting as I did not know your new name(Mikat 828)How are you doing kiddo.I am doing great except for the leaky gut,yeast and itchies.They only get worse the longer I stay on AP and no matter what I do the problem does not go away.Some kids on the Rheumatic.org site reccomend olive leaf extract so that will be my next step as soon as I can get to the health food store.Very busy with the orchid shows at this time of year and thankfully the last one is next week end
    I have not had much time to be around the computer but things will settle down after next week…..maybe.Just have a few thousand plants to repot and all the yard work is waiting as we have gone from 5 feet of snow to total summer in the last week.The lawn is a total mess as the moles had a great time under the snow all winter.Must get that raked up and reseeded ,then there are over 3000sq. feet of flower beds begging for attention so I guess computer time is at least a month away.hehehe. Off to the airport to pick up an order of plants from Thailand.See you later

[DianeWI]

Hey Lynne,

Have you tried Nystatin Topical Powder?  I use it nightly before going to bed and it keeps the itching and yeasty issues somewhat tolerable.  Also, with all the work that you do with plants etc…you are always breathing in mold spores.  That may be adding to the issues.    I always get worse when I work outside, especially this time of year and in fall.  Pau-D-Arco liquid drops added to water helps some. 

Diane

[mikat828]

Hi Lynne

I think both Olive leaf and oil of oregano are good for yeast.  I am going to try Kefir which is supposed to help all these issues.  Anyone here try it?  I got my intestines messed up last year and it has taken me a year to get it back fairly normal!  So I totally understand your problem.  Talk to you later

Kathy

[lynnie_sydney]

Lynne – so sorry you're still having gut problems. Rather than 'adding' something to take, have you considered a dietary change completely for a while to help heal it?  Excuse me if you have and have posted about that – I've been absent for a while. It might be worth getting tested by a good natural health practitioner for sensitivities. I have also posted some other info my AP doc/Naturopath told me about leaky gut in my journal in the Personal History/Progress section if you're interested.

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)

[Lynne G.SD]

Hi Lynnie;
          Been there and done that.Tried just about every no-yeast diet there is which does not leave much to eat seing as how I am Celiac and can;t have grains,no “cow” anything,no nightshades,no legumes,no citrus,nothing from sugar cane,no asperigus,nothing with vitamin D.I have been living on greens,porc and chicken for ages with no change.I am about to give up.Diflucan,Sporonax,olive leaf extract don't even do much.I am about ready to give up.

[Author]

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