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Linda,
I'm truly sorry that AP has been such a struggle for you. The Roadback will always be a place of support for people with autoimmune conditions whether they are solely on AP or a combination of AP and biologics, etc. I am gladdened when we can reach someone right at the very beginning of their illness and prevent the struggles that you and so many others have faced (including my husband) of trying to undo the damage that could have been prevented in first place with accurate diagnosis and treatment. We all do what we have to to find a way to deal with the disease. I have witnessed the horrific pain and disability of these diseases and don't belittle anyone for taking something that makes their daily life bearable. I hope you are able to eventually find a combination that works for you. Oral therapy wasn't enough for my husband so you are right that for some IVs are needed for more entrenched cases.
Oh, and by the way, my husband's beginning with AP wasn't auspicious at all and I watched in envy as others seemed to quickly turn things around or at least start to turn things around after several months. It was a struggle to find the right doctor and the right treatment and has truthfully been exhausting – physically, emotionally and financially.
Like Dave,I will never go back to traditional meds.I was days away from death due to liver failure caused by the very low dose of methotrexate I was on.Liver enzyme tests were done every 2 months but I guess the last one did not pick up on the problem as it showed”almost normal”If you think that SD hurts,you should try liver damage for REAL pain.The only position that I could tolorate was standing up.The pressure of lying or sitting was too much to bear and I kept wishing I could sleep standing as horses can do.This misery lasted over four months.Now I have severe osteoporosis from the pred that I only used one year.The doctor told me these meds would not cure the SD but would slow it down somewhat and that they would monitor the drugs effects to make sure they did not kill me before the disease would.BOY! did that lift my morale!!!!!YEAR ,Right,I was still going through the mummification and was lucky enough to have found this board over te years ago when there was only a handful of people.If it had not been for Richie and A friend I would have been dead a long time ago.It took years and many AP and diet changes but I am in remission for the last few years with no visible sighns that anything was ever wrong
The wonderful thing about this discussion forum is that it would have to be a pretty clear case of flaming (inciting an argument or behaving in a threatening manner) for there to be a cause for censorship. People come and express their opinions, like on Sierra's homeopathy thread, and there is respect for other people's views, whatever they may be.
There has not been a single occasion since the installation of this new BB software to delete a post, because all participants have so far respected one another's differing opinions. Sadly, on other support forums, this doesn't happen. I know of some BBs where posts and participants mysteriously disappear and only glowing posts remain, leaving others afraid to share their concerns or difficulties for being the next on the deletion roster. That, in my humble opinion, is the definition of a cult…controlling the masses and molding acquiescient acolytes. The flipside of this are the sites where there is no respect for other people's opinions and its participants are just plain nasty to one another. I joined a few of those before finding Road Back and they were draining and anything but hopeful.
The majority of people who come to this support forum for the first time are very sick. So what concerns me on a daily basis is that new members feel welcomed and quickly learn that this is a safe place to come and vent, be themselves, share their darkest nights, make friends and know that they are understood fully by others who have been there, too.
I'd therefore just gently remind everyone on this thread that people are arriving to this support forum every day and are very unwell, simply looking for hope. I was very unwell when I first arrived and I found hope here. I couldn't believe that I'd actually found a place where others believed, as I did, that infectious causes had triggered my rheumatic disease. It's why I now volunteer, so that I can give back a tiny fraction of that priceless gift of hope that I received and has been so invaluable on my road back, keeping me going on some of my darkest days.
In light of the discussion that has unfolded here on this discussion thread, I'd ask all participants to just remain a little bit mindful about newcomers who are excited to find the prospect of a safe, effective alternative treatment. If you watch the Dr Brown video, it is clear that Dr Brown was a humble man and he states that all the patients who went to his clinic were okay about the fact that they may not get well immediately, because they felt a renewal of hope that had been lost…and probably because they had the support of a very compassionate physician who exuded hope to them. This hope for a brighter future went a long way to Dr Brown's patients getting well again. If hope is a placebo, then its a wonderful one! When I first became unwell, it was like being in a dark hole where I just wanted to die and be done with the pain. When I found this site, a little pin-prick of light appeared in the distance (the others here on this site who encouraged me with their inspiring stories) and that light grew, as I started to become well again until one day I realized I was actually generating a bit of my own light again. Today, I went to the gym for a workout I could not have accomplished this two years ago and I stood outside in the sun and realized the depth of the dark hole that was now behind me, appreciating how far I'd come and what it took to get here.
Let's all welcome newcomers so that they can find their own pin-hole of light through us all. This is a support forum for people seeking AP and, as newcomers arrive and navigate the inevitable ups and downs of those challenging early days, let's be there for them and save the heavier discussions for later. Road Back “advocates” for AP and supports those who seek it; it doesn't push it on anyone. Patients find their own way here and when they arrive are asked to do their own research and come to their own conclusions, though we may offer support and resources along the way.
There is no need to defend AP here…we are here because we support those who choose it. For those who choose other paths, they are welcome to remain and learn more or just soak up the comradeship of fellow rheumatic suffers. There is no need for anyone to defend their choices, to feel it is their perrogative to educate others or to make others wrong. We each choose our own roads, because we have our own roads to walk. Thus, we must educate ourselves about our own choices and all that is required of us is that we respect the choices of others. As Lynne just described, there is a ripple effect to our words, which are very powerful, and can be used to harm or to heal. Let's keep this a healing place.
Peace, Maz
[user=27]Maz[/user] wrote:
The majority of people who come to this support forum for the first time are very sick. So what concerns me on a daily basis is that new members feel welcomed and quickly learn that this is a safe place to come and vent, be themselves, share their darkest nights, make friends and know that they are understood fully by others who have been there, too.
I came here sick and downright terrified. You all took care of me very well in those early days (and you still do!), and I am so grateful.
I am happy to report that later this month I'll have a first appointment w/ a rheum who is also an LLMD. There's no way I'd be on this route if it weren't for the Road Back!
Heartfelt thanks,
Marie
[user=27]Maz[/user] wrote:
I'd therefore just gently remind everyone on this thread that people are arriving to this support forum every day and are very unwell, simply looking for hope.
In light of Maz's words, I now realize this board is not the place to disseminate accurate information, rather it is a pollyannaish destination for those wishing to engage in groupthink. I truly hope you all find peace and relief to what ails you.
Have a great weekend!
Joe[user=20]Joe M[/user] wrote:
[user=27]Maz[/user] wrote:
I'd therefore just gently remind everyone on this thread that people are arriving to this support forum every day and are very unwell, simply looking for hope.
In light of Maz's words, I now realize this board is not the place to disseminate accurate information, rather it is a pollyannaish destination for those wishing to engage in groupthink. I truly hope you all find peace and relief to what ails you.
Have a great weekend!
JoeHi Joe–
I hope you are wrong, although the recent “hand-slapping” of you, Jo, and Jaminhealth make me nervous, since I saw nothing wrong with your posts. It actually kept me from posting my good news for awhile because my doctor was not using pharmaceutical antibiotics, rather herbs and supplements.
This is the only board I read. I don't mind hearing dissenting voices, differing opinions. I log in for information, what works for people, what doesn't, how they cope, what alternatives they use, etc. I was sorry to see Jo had stopped posting; she posted today though–welcome back Jo!
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=20]Joe M[/user] wrote:
In light of Maz's words, I now realize this board is not the place to disseminate accurate information, rather it is a pollyannaish destination for those wishing to engage in groupthink. I truly hope you all find peace and relief to what ails you.
Joe, I'm really sorry you feel this way. This is a peer support forum and we're not really sure how we can best support you or Michelle or even if you're looking for that kind of support.
To reiterate, this forum is a place where patient volunteers advocate for antibiotic protocol and where patients can come to find “support” for the AP treatment option. You have been around this support forum long enough to know that other forms of therapy are also discussed in a very open, uncensored way – everything from homeopathy and prolotherapy or LDN to conventional meds, including the biologics – and that every effort is made to present accurate information. This is why we ask posters to substantiate claims about supps and adjunctive therapies, to protect both the longevity of RBF for themselves and other participants from potential harm.
Your presence on this support forum, while not clearly understood, has been appreciated for the alternative point of view you offer. However, there is a line in the sand that must be drawn here and it would be drawn in any instance where a similar occurance should arise. That is, there are ways to share views in a neutral, helpful manner, without undermining the prime purpose of this support forum, which is to support participants in their choices. I think you misinderstand us, we are merely asking you to be respectful to and mindful of newcomers and to wait for an appropriate time for imparting such information.
In this particular instance, it is not what you were trying to convey, but the timing, how it was done and to whom – a newcomer. You seem to have artfully avoided addressing this in every response you've made since Lynnie drew this to your attention, responding with totally unfounded statements about how this support forum is conducted.
This support forum is no stranger to rants and occasional heated discussion, as you are well aware, but flaming (inciting unproductive discussion geared to undermining a site's aim) is grounds for banning from any online group. We do have that option at our disposal, but RBF volunteers are a different breed and prefer to settle disputes amicably first. We therefore ask that you remain mindful of this and censor your own need to troll and police other people's belief systems on this support forum and to keep the personal insults (e.g. “pollyannaish destination” and “disseminating inaccurate information”) to yourself. There is a time and place to share your appreciated, well-researched information about biologics and how they have worked for Michelle, but that time and place is not when someone is newly arrived, happy to have found others who support their choice and looking for support. I see no other purpose to your post addressed to me above but to undermine the many hours of volunteer support put into this forum.
Joe, RBF volunteers have already spent an inordinate amount of time, with great patience, drawing your attention to the fact that we do not want newcomers confronted on their beliefs as soon as they arrive. If we can support you better to learn more about antibiotic protocol and supportive adjuncts to help Michelle make a return to AP or even if your only desire to be here is to impart stats on biologics with others, then you are most welcome. If you can't be respectful of other participants beliefs in the process, perhaps you'd get more value in another online forum that closely matches your personal needs.
I do not intend to engage this discussion further. How you wish to interpret my comments is your choice.
I sincerely hope Michelle remains symptom-free and well on Humira. You obviously love and care about her a great deal to continue researching her condition and all possible alternatives. We will be here to support her, or you as her advocate, if she ever chooses to try AP again.
Wishing you only the best,
Maz
Tom, we deeply regret that your discussion thread has gone so off-topic in this way.
If you'd like to refocus this thread back to your original topic, “AP, Just treating inflammation not the Auto Immune side?” then please feel free to start up a new thread for fresh discussion. We're probably reached a dead end here with any further posts just lending to the unfortunate direction in which this thread has gone.
Peace, Maz
Starr –
Would you post the current medical opinion and research regarding the role of autoantibodies in the etiology of autoimmune diseases and autoimmune disease in general.
Start another thread, please.
Hi Joe!
Pip
Hi Pip!
How have you been? Any luck converting others on the other board? I was hanging out there for a while, but all the infighting and politics got to me. Not to mention the general b*tch and moan posts. I often wondered if those people were real! Most of them needed the WHAAAAmbulance !
Haven't heard from you for a while and always wonder how you're doing!
Take Care,
Joe[user=20]Joe M[/user] wrote:
So why does half the population have these infectious agents but no signs of disease? Assuming I am one, it means my immune system is smart enough to ignore these benign agents, while yours mounts a sustained attack wreaking havoc with normal bodily functions while unable to eliminate the pathogen. Maybe if the medical community called it “dysfunctional immunity” rather than “autoimmune” it would be easier to accept there is an inherent flaw in your immune system. I'm not saying an “infectious” agent is not the cause but rather how the immune system responds to this agent.
This is an awsome statement if you think about it. All of our immune systoms are not the same. Those with allergies, and hayfever feel sick because their immune system is attacking the pollen with histameins hence they take anti histamine. So our body may not have anymore of the bacteria than the Joe next to me but my body feels the need to attack this benign organism. So next time someone ask me if I am allergic to something I can say yes Mycoplasams. Swwwweeeeet.
Prix, if you have watched the Dr. Brown video, you see where he refers to the reaction to the mycoplasma as an allergic-type reaction. It's a great video and I highly recommend it to everyone. Double thanks to Maz to getting it posted !!
[user=20]Joe M[/user] wrote:
Hi Pip!
How have you been? Any luck converting others on the other board? I was hanging out there for a while, but all the infighting and politics got to me. Not to mention the general b*tch and moan posts. I often wondered if those people were real! Most of them needed the WHAAAAmbulance !
Haven't heard from you for a while and always wonder how you're doing!
Take Care,
JoeTsk tsk, Joe! You know some of their regulars who lurk here will take offense to that!
But since one of their most common disparaging remarks is about censorship on this board, I do hope they find this thread and see that it is not true. A perfect example that nothing is deleted or censored here. Registration has proven to be a wonderful addition, hasn't it?
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Yes Suzanne, registration does make it nice. I hope it doesn't deter any newbies from posting – sometimes people shy away from registering on the internet for anything. But all-in-all it's a good thing, IMO. How is your daughter? (I think it is daughter, forgive me if I am wrong). There was a JRA post on here recently asking about JRA experiences, and you were mentioned as the expert. Stinks being the expert on that topic, doesn't it?
Pip,
A good way to get a pulse on current scientific thought in a certain area is to go to university websites and look at research interests of that particular faculty–immunology, microbiology, etc. Another is to check out the CME publications (Continuing Medical Education). Try Googling “CME pathogenesis of rheumatoid arthritis.”
For people who don't know how to use PubMed but are interested in learning about the antiinflammatory properties of mino, just do a Google search for the words “minocycline potent antiinflammatory” and you will find an assortment of scientific studies. It produced 62,200 hits when I just checked. Maybe more since I wrote this.
Also, there's recently been publication of a special collection of reviews called the Scientific Basis of Rheumatology: A Decade of Progress
Find it at: http://arthritis-research.com/series/sbr2008
Here's a blog: http://blogs.openaccesscentral.com/blogs/bmcblog/entry/part_1_of_arthritis_researchI didn't want to start a new topic because this is really a support forum but I hope this helps you find the info you need.
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