Home Forums General Discussion Who's doing A.P. exclusively and feeling great?

Viewing 15 posts - 16 through 30 (of 40 total)
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  • #310074
    Maz
    Keymaster

    One thing I've wondered about is whether it would be viable to have a BB section, separate from the “General Discussion” main link, called something like “AP Patient Diaries”?  Maybe as a pilot project, just to see if it could work?

    Anyone who was open to doing this, could begin their own personal thread – e.g. “Maz's AP Diary” – to document progress on AP or abx therapy from the beginning – also adding info about dx(s), previous meds, current meds, symptoms, alternative therapies and supplements, etc , updating by just hitting the edit button. This could be updated, for example, once a month or whenever a change is experienced, for worse or better.

    Just an idea and may not be feasible (for a few reasons that already come to mind), but perhaps some BB brain storming could evolve this into something viable? What I've found to be a bit perplexing is that when someone writes in with a particular problem asking for suggestions, it's not unusual to know nothing or very little about the person, missing critical details that may be co-factors to the query.

    Peace, Maz

    #310075
    SusanSD
    Participant

    Dena,

         If I read your post correctly, you have reactive arthritis. Several months ago, I saw in the Cochran Library (online) that they are seeking studies to reivew and they listed the criteria –  the topic of the review was antibiotic treatment for reactive arthritis. To me, this is huge. They are acknowledging enough evidence is out there to review antibiotic treatment as a legitimate therapy. So, if doctors do not know about this, then those with RA or SD struggle even more with getting antibiotic prescriptions.

         Right now I am reading an article “How can a causal role for small bacteria in chronic inflammatory arthritides be established or refuted”? They cite Kuipers and colleagues as doing research to understand the role of bacteria in reactive arthritis. Authors also discuss Lyme arthritis and Mycoplasma arthritis. Although it is filled with medical jargon, I am trying to wade through it.

        Jenn, I nominate your for PR Chair. We do need more visibility and I think that the best selling point is AP works. The biggest drawback is that people are looking for a miracle cure overnight and AP doesn't offer that, so people give up on it before they see results. I think someone on the old bulletin board wanted to sell bumper stickers and T-shirts about AP – — that's a start and a lot cheaper than hiring a lobbyist.

     

    #310076
    Joe RA
    Participant

    Maz …you have very good ideas and I think its a great one, I hope others pick up on it and please keep me in mind if you are adopting. The best for all ……….Joe RA    

    #310077
    Dena
    Participant

    Looks like the making of a sling shot right here online.  I sense the seeds of activism and I'm in.  Let's brainstorm what we could do to make the Arthritis Foundation and pharmaceutical companies sit up and take notice.:P

    #310078
    linda
    Participant

    Maz, something like a My Space page? We could put journals, therapies, pics, notices of community events or opportunities for spreading the word, list any skills or talents we might have that could be useful, contacts ( congress, senators, organizations), etc. “My Road Back Space”?
    Or were you envisioning something a little simpler?

    Almost forgot, about the Arthritis Foundation. They do have some good programs to help those with AI dx; walks, marathon training- they pay for a personal trainer and expenses for the trip to run/walk the marathon (altho I suspect that one would be required to wear clothing with AF logos and some type of ad for remicade, humira etc.) and scholarship programs. How about infiltrating their camp and sharing our experiences with people in these programs?

    #310079
    Dena
    Participant

    Susan, I'll look that up.  I have a little experience with journalism and a lot of experience writing.  Let's continue to brainstorm what we can do to get the word out!

    #310080
    Dena
    Participant

    Do you have a membership in Cochrane?  I found an article, then it said to pay $29.95 to access it!

    #310081
    Jennhere
    Participant

    I think they will take notice when the conversation reaches a broader audience.  As long as it remains quiet, it will get no notice from the larger market or attention from the medical establishment.  I mentioned bumper stickers once and was told it was tacky…. So what if it's tacky?  Anyway, I don't think it's tacky.  If “A.P.” becomes a known abbreviation, the mainstream will take a closer look at it.  If the mainstream population takes a closer look at it, the medical field will have to take a closer look at it.  When they do, they'll have to contend with more than a few people who are already familiar with the protocol… cuz they're using it and having success with it.  As long as it's a fringe group of people in the know, the medical reports can be slanted to deride the effectiveness of A.P. 

    There's a site called cafepress that makes anything you want.  Free to design it.  FREE to design it.  Just someone with an idea go to the site and design a bumper sticker or a t-shirt or a mug… I'll buy it.  Send me a link.  I tried once, but I got confused on the submitting of my design idea and quit. 

    I'll slap a bumper sticker on the back of my mini van tomorrow…

    A.P. “cured” my arthritis!

    A.P. Kills R.A.

    A.P. destroys R.A. not the Patient

    A.P.  beats the Th1 Diseases.

    You know, something..  I'll buy it.

    Jenn

    Maz- your idea is great.  Do you want to begin it?  I'll wait for you to make the first post.  Every one can post an individual entry- and use the edit button to update it.  Like a jounal entry log.  We'll avoid conversation under that thread- just keep our individual medical approach and reaction to A.P. chronicled there.

    Great idea, Maz!

    Jenn

    #310082
    Dena
    Participant

    Antibiotic treatment is not effective, probably because the triggering bacteria are already dead or in a partly latent state at the time arthritis occurs.” 

    That is the conclusion I read in a 15-page article I was able to access on the Cochran Report.  The article, “Report on the Fourth International Workshop on Reactive Arthritis,” was in April 2000 Arthritis & Rheumatism.  It focused on  bacterial infections from ersinia, Shigella, salmonella, and Chlamydia which are transported to joints and synovial fluid by monocytes.  (I'm just paraphrasing, folks, have no idea what all this means).  They said that a low TNFa level correlated well with a chronic course of reactive arthritis (they use the abbreviation ReA).  Also, the article said, “Currently, there is no clear evidence of autoimmunity in ReA or other SpA and no candidate autoantigen.”

    Susan, I can't thank you enough for this site.  How is the reading on your article coming?  I didn't find that one.  Now I'm wordering what subsequent workshops have found.

    I'm here to tell you AP DOES help with ReA, but I am intrigued by the article because I have had many vaginal yeast infections over the years and only once, about three years ago, did a doctor say it was chlamydia, but no alarms sounded.  Maybe he was wrong, but the antibiotic he prescribed cured it while the usual monostat didn't.  I was treated and sent on my way.  Now I'm wondering if my ReA, said by my doctors to be of unknown etiology (med-speak for origin) started with this. 

    Miles to go before I sleep.

    #310083
    Manda
    Participant

    [user=27]Maz[/user] wrote:

    One thing I've wondered about is whether it would be viable to have a BB section, separate from the “General Discussion” main link, called something like “AP Patient Diaries”?  Maybe as a pilot project, just to see if it could work?

    Anyone who was open to doing this, could begin their own personal thread – e.g. “Maz's AP Diary” – to document progress on AP or abx therapy from the beginning – also adding info about dx(s), previous meds, current meds, symptoms, alternative therapies and supplements, etc , updating by just hitting the edit button. This could be updated, for example, once a month or whenever a change is experienced, for worse or better.

    I've seen something similar on other forums.. It's not inside the general discussion area, its a different area. The person writing makes their own diary, and replies to it as they see fit. It's really interesting to read, helps you to feel like you know that person a lot better. 🙂 I like the idea!

    #310084
    Cubby
    Participant

    I have been on Minocin 100 mg 2 x per day since Octobr 2005.   I also do Photophersis which I have been doing since August 2005.   I feel great and almost in remission.

    #310085
    Loria Chaddon
    Participant

    A good place to start, in my humble opinion, is each person putting into a spreadsheet/database  individual test results, medications (dose, start/stop dates, etc).  I am tracking my husband's test results this way, and journaling his progress and am going to do the same with his meds.

    Did you know that the pharmacy can give you a printout of when and which meds were filled.  My pharmacy can go back 7 years.  I will be getting that to put exact dates on meds on the spreadsheet.  Then I will see if I can correlate changes (pos or neg) to medication changes.  This is impirical evidence and hard to argue with.

    Good luck all.

    #310086
    SusanSD
    Participant

    Dena,
       
          I'm glad you were able to find something on ReA. I have access to Cochrane through my univeristy's databases and here is a paraphrase of what I found interesting (don't want to break copyright by cut and paste):

    Microbial components have been demonstrated in the synovial fluid and in circulating blood cells in patients with ReA (Sibilia 2002), suggesting the role of long-term antimicrobial treatment to eliminate the causative agent. Hoogkamp-Korstanjie et al (Hoogkamp 2000) found that a ciprofloxacin course of 4 to 6 weeks was effective in Yersinia-triggered ReA, Carter et al (Carter 2004) reported that a combination of doxycycline and rifampin is more effective in treatment of chronic ReA than doxycycline alone. Based on these studies, it has been hypothesized that antibiotic therapy for ReA would shorten the duration of clinical symptoms and prevent a chronic disease progression (Pott 1988; Bardin 1992). However, there are contrary opinions indicating the lack of solid evidence for antibiotic treatment in ReA (Eberl 2000; Toivanen 2001; Sieper 2000). Some clinical studies have concluded that antibiotic treatment of established ReA does not have any effect on ReA (Kvien 2004; Smieja 2001; Fryden 1990).
    This systematic review is intended to assess the efficacy and safety of antibiotic therapy for ReA.   

    They then go on to describe what kinds of studies they are looking for in order to qualify for the review.

    The article I was reading said that C trachomatis is considered to disseminate from the genital tract and cause reactive arthritis. It went on to say that therefore its seems plausible that C pneumoniae could spread from the respiratory tract and cause the same problem. But causal proof eludes researchers on this.

    Yikes, better get back to work!

    #310087
    roserdRA
    Participant

    All I EVER took is Minocycline and Ibuprofen. I take 100mg Mino twice a day every day ( I sometimes skip one in favor of a glass of wine -or two- when we have special dinners or so- gotta live a little too- LOL).  I never made any diet changes, but I eat a lot of whole grains and vegetables/fruit – I always did.

    I started Mino about 6 months after first symptoms ( left foot only), which I ignored until it hit me everywhere overnight. I started 3 months after severe onset of symptoms. I was able to go off ANY pain killer within weeks of taking Mino and never needed one again. I will be on it a year in mid April and I just improved. My bloodwork is completely normal. Anti-CCP and RF have been dropping and dropping as well. I sported an Anti-CCP of 11 and a RF of 20.3 about 6 months ago. I saw my Doc today and also did new bloodwork today. I am really eager to see the results in a few days! I am painfree for the most part and just have only “quirks” sometimes in my wrists and elbows and my left foot, that's it!  The pain is completely gone since months in right foot, knees, shoulders, throat, jaw, and both hands where all my joints even some DIP's where swollen and painful. I am even wearing high heels again- Beginning of last year I could hardly get into sneakers! I am determined to beat this.

    Other things I do/did – Kefir (probiotic), 1000mg Vitamin C ( do forget sometimes) and a Multivitamin-Mineral and also Fischoil if I think of it. I did Lemon/Oliveoil drink and Epsom salts baths when it was very bad but haven't done this in months – maybe I should- couldn't hurt!

    #310088
    Jennhere
    Participant

    With just the posters who've responded here- you can begin to see how POWERFUL a compliation of POSITIVE reports would be.  Nothing but good could come from a comprehensive gathering of our tweaked protocols that addressed our individual manifestations of the disease.  Something along the lines of: this is what I had, this is what I tried, this is what I ended up doing, this is what my road has been like, this is where I am today, this is my attitude towards my disease.. 

    Sending a new doc to read that bunch of stories would have to be compelling.  One story after another with varying A.P.s and even M.P. and diet and the trek to find the doc who would take the patient on.

Viewing 15 posts - 16 through 30 (of 40 total)

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