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[user=11]linda[/user] wrote:
I think it's wonderful that Jenn and so many others are doing so well on AP. I do believe that if it was more popular it would be given as an option to patients early in their disease and be more effective- how I wish I had known about it 20 yrs ago. I still plan on trying it again when I get to TX (Aug-not long now), but being single I have to be able to move and find a job when I get there, so I don't have a choice than to continue with the biologic I'm currently taking. Thankfully, thru this bboard I have found a rheumy in SA that will rx abx. I guess what I'm saying is that I'm grateful for those who are using AP successfully, but that it is not always a prcatical option for some of us.
Linda, what a very candid and wisely spoken post. Thank you so much for sharing some of the more practical considerations regarding the treatment choices you have made in the past. I greatly appreciate the long, rough road you've traveled, as I have seen my mother-in-law travel a similar pain-filled path with her PsA. You make a very valid point that “needs-must” plays a very large role in making a decision over treatment options. For those with young ones, like Joe's Michelle, the need to function, continue making a hard-earned living, caring for young ones and elderly ones…all of it is a part of each individual's picture and there should be no judgment either way in the types of treatment one chooses….no need to make one another wrong or perceive a patient as a failure if a particular treatment doesn't work for them.
The Road Back exists with the goal of preserving the legacy of Dr Brown, providing information and support to those who choose AP. Like anything, it works very well for some and for others it needs a bit of tweaking here or there…and, whether it's considered “anecdotal” or not, it's been proven to be an efficacious treatment for many rheumatoid conditions…in some cases, it's been life-saving.
Thank you so much for your very insightful, balanced perspective.
Peace, Maz
[user=27]Maz[/user] wrote:
the people in The New Arthritis Breakthrough who provided testimonies of their remission to see how they are doing today.
I personally know two of the people whose stories are told in the New Arthritis Breakthrough and the Scammell Scleroderma Book. They are at the 25+ year mark with AP (drug induced remission) and are doing well.
Cheryl
Yes, they take oral antibiotics. They did iv initially W/Dr. Brown, but only oral for a long time now.
Cheryl
[user=20]Joe M[/user] wrote:
It is documented that 10% of all RA cases remit naturally. (I can dig up the documentation if anyone is interested). So if someone on a biologic or on AP remits, how do we know it is not a natural remission? We don't, unless they stop the medicine and it comes back.
I changed my signature to more accurately reflect Michelle's current condition. I apologize for any rancor but I feel strongly about allowing patients to make choices based on their circumstances, as Linda pointed out, and respecting those choices.
Hi Joe,
It's okay…..it's not easy for newcomers to know everyone's past history. You're an old timer here and, although Michelle is no longer on AP, we know you still enjoy participating, because you want to remain abreast of what's going on in the AP/RA world. I enjoy your contributions, which often provide me with a wider perspective on many different topics. Sometimes I become aware of myself donning microcosmic lenses which can often blur or narrow my views on things, so it's always good to see issues from every angle, even ones with which I may not fully agree or even 'like.'
I completely see your point with regard to spontaneous remission, but in the case of AP, estimates of Brown's success rate for bringing patients to either drug-free or drug-reliant remission far exceeded 10%….I believe in “the book” that Scammell felt it was pretty close to 80%? Can anyone verify or correct me on this off-hand? Mind you, even if it was only 20%, minus the 10% who may spontaneously remit, that remaining 10% would be pretty significant.
I also think it's very important to respect patient treatment choices. Having just re-read Jo's post, it's hard for me to see how she may have disrespected Michelle's choice or anyone's choice to be on Humira…she really just pointed out that being symptom-free while on Humira wasn't a “drug-free” remission….which is true….no? No different from the many who remain on AP, after having reached a symptom-free state, and are in a drug-reliant remission.
Only speculation, but I think what may be at issue here is that APers come up against so much resistance from the medical profession (sometimes to the point of feeling ridiculed) to just let them give minocycline a try that this creates an equal and opposite force all of its own within patients, themselves. As a result, APers feel they must justify everything…why we want to try it, why we want to stay on it in spite of the ups and downs and why, when remission is reached, it worked. Even when we 'win' and reach remission (as JenTX described in her recent thread), there is an almost begrudging attitude that doctors convey…a disbelief that AP may have even had any role to play in creating the remission. In the case of scleroderma patients who have achieved remission on minocycline, the standard response is that the person must have been misdiagnosed in the first place, because remission is never considered to ever be an option with this disease. There is the one story in “The New Arthritis Breakthrough” where this occurred and the woman responded that she'd actually received her scleroderma diagnosis from that doctor who was saying she was misdiagnosed.
So, please bear with us, Joe. We're all here to learn more about AP, but for so many very individual reasons…namely that we want to get well or help our loved ones to get well and be disease-free. We might be a bit defensive sometimes, but it's quite a tide that APers must swim against and the going can get rough sometimes.
Thanks, always, for your understanding.
Peace, Maz
Hi Jennhere,
As a newbie, and having a rough go of things, I just wanted to tell you how beautiful your message was…I am in so much pain right now:crying:, to know that it really does work, well…it's hope, for us all. Thankyou very much.
GlitterGirl
Hi Joe – I apologise if anything in my post seemed to convey a 'blame the victim' stance. That was not my intention at all.
For AP to become mainstream, it should have a strict defined course of treatment, not one that needs tweaking and supplementing.
In fact, we are pretty well on the same page as far as this is concerned. I am very pleased your wife is doing so well and hope that she continues to. I also thank you for your ongoing contributions to this Board. We are lucky to have you……as is your wife. Best to you both. 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)Thanks for the reply, Maz. It was a difficult decision for me to stop the abx and go back to a biologic. It encompassed a lot of different emotions; guilt for not sticking it out, to anger that had my ex not left I could have stayed on the abx and not had to worry about getting a job and money. But none of these emotions changes the circumstances so I've just let them go and have decided to focus on getting myself into a situation where AP can have the best chance of working. One of my obstacles was my $1,000/mo insurance premium, it was killing me financially and forcing me into a situation where I didn't have time to wait for the abx to work, I needed to get healthy enough to get a job ASAP.
Thankfully, that situation has been resolved just in the last few days, by the last person I expected! My ex has just retired from the military and has a new job in the civilian world. His wife is military and does not need insurance, so he asked his employer if he could put me on his group plan. His employer agreed, and since we (my ex and I) agreed to split the cost, my insurance premium is now $116/mo. Woo Hoo!!! This gives me some room to try AP again without having to worry about working right away after I move, and with a lot less stress. I'm very hopeful that soon I will be posting about herxes and decreasing prednisone doses, etc.
However, the other major obstacle that I have to overcome is the side effects I have from being on the prednisone for so long. I'm facing hypertension and diabetes as permanent conditions if I don't get off the pred soon; if I wait 1-2 yrs for AP to work I'll just be trading one chronic disease for another. So I'm going to have to compromise and stay on the biologic so that I can quit the pred. sooner. Hopefully with the combination of AP and biologics I'll reach that goal and eventually even wean off the biologic, or at least stretch out the time between doses as Joe's wife Michelle does. If anyone reading these posts is wondering whether they should try AP, my answer is to do it now and not wait until complications from other meds and entrenched bacteria make it less effective.
Just one more thing, tho. Even if I'm not able to stop the biologic, I don't consider this experience a failure. I have 3 boys; 26, 23, and 20. They have all inherited my psoriasis, and my youngest (who also had mild asthma as a child) is now starting to have joint pain in his knees. They all are at risk of developing PsA, but if they do I know how to prevent them from having it change their whole life, and I know the names of doctors where they live who use AP. Because they will be catching this disease at its onset, they will have much better success than me. The peace of mind I get from that knowledge is PRICELESS. I also draw comfort from articles like the one Joe posted about research into safer biologics, if for some reason it becomes necessary for them to need that option. Reading success stories like the one about Cheryl's girls is very comforting, as well.
Thanks again to Maz the zen master, and to everyone for expressing their opinions with respect to all of the different circumstances that affect our choices,
Mean as ever, linda (not really, but this post was just getting way too emo!)
Hi all,
Stupid internet connection down all weekend :X.
Maz, I suppose it was the part about not being tenacious and ignorant of the perceived long term ramifications that got to me. We did not make the decision lightly, and of course we were fully aware of the potential benefits and risks of the decision we made. It also doesn't mean we turned our back on the infectious theory. I still think its a good theory, but one piece of a larger puzzle, much of which is still unknown.
Linda's posts have said things much better than I could ever say them. Thanks to you Linda for your balanced perspective.
Hope everyone has a good week.
Joe
[user=11]linda[/user] wrote:
Mean as ever, linda (not really, but this post was just getting way too emo!)
:roll-laugh: I dunno, Linda…I think you have quite Zen master residing in **you**!!! :dude: Your posts are always so calming to the spirit to read….the words of someone who has walked a long, challenging trail and still forges on with a lot of strength and courage. Your perspectives on things always bring balance and I, for one, greatly value your experienced input. Thank you for being here!
What a gift that your ex pulled through for you on the insurance front, helping you to get better coverage. This must have felt like a tremendous boost for you and what a blessing….I'm feeling relieved for you!!!!!! Your thoughts about taking things slow are really smart ones. In the same boat, I would probably follow your lead….stick with the biologic to be able to function and give the AP time to kick in. When you get to Texas, you'll have lots of good AP help, too….Texas seems to be one of those states that have a glut of AP docs.
Thanks for mentioning about your sons, too, and the possibility that your youngest may also have PsA. I have wondered about this with my husband, because as you know his Mum has PsA and AS. For the last 10 years or so, he's also started getting small patches of psoriasis on his elbows that come and go…just like his Mum started out in mid-life. He's a marathon runner…or was till I became unwell. Now, he trains intermittantly and still does the 'smaller' half marathon and 5K runs…his joints (ankles, feet and knees) can really hurt him at times, so I can't help but wonder if it may be early PsA or just the constant pounding his joints take on the roads. Just something to be vigilant about probably. He's not the type to “look” for problems, but deals with them when they arise…a cancer survivor who 'made it' through his sheer force of will and love of life. So, it's no fun being a whiney baby around him! :roll-laugh:
Thanks, again, Linda, for sharing so much and lending your strength and wisdom here. I am looking forward to hearing about the day when you are settled in TX and making good headway, hopefully without any more worries, constraints and complications regarding your health.
Peace, Maz
[user=20]Joe M[/user] wrote:
It also doesn't mean we turned our back on the infectious theory. I still think its a good theory, but one piece of a larger puzzle, much of which is still unknown.
Very good point, Joe….infectious theory is one piece of a much larger puzzle. So many other complexities seem to be involved…like hormones, diet, stress, immune system proclivities/hypersenstivities/allergies, the whole D thing, etc. There are a lot of unknowns about it all and we're all so unique in what may be contributing to our own pictures and to what degree. And that's not even touching the surface when one adds in everyone's individual “need to function” in daily life. Nothing is “good” about these wretched diseases, except maybe how much more we are led to learn about compassion and understanding in the process.
Peace, Maz
Re infectious theory
There was an article in the paper today about a totally unrelated subject; however, these few sentences caught my eye:
“When a person is under stress, the body removes iron from the bloodstream.
“This is a very primitive response as a way to protect us against bacteria, which need iron to survive. That's what still happens if you're under stress, you pull iron out of your blood, as if you had a bacterial infection,” he said.”
http://www.jsonline.com/story/index.aspx?id=766823
Posted: June 27, 2008
I have never, ever had a problem with iron; in fact, when my first was born, I was informed to never take iron supplements because even though I had just given birth and lost a bit of blood, my level was up there. I had actually checked into hemochromatosis (too much iron in the blood) as cause for my joint pain.
Today I am anemic and anemia is a symptom of RA.
Not sure if I'm on a right path, but depending on how many people actually are anemic while having RA, the infectious theory carries a lot more weight.
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?
Joe: Internet stories are documented evidence of the benefits of AP for autoimmune disease. Read more of them. Why are you visiting the roadback site? We are here on the site to encourage and help each other. You seem to be on the site to cause trouble. People on this site have the right to be defensive. We are in a battle to gain health back again and not with high risk drugs. I am happy for your wife and her apparent success. You should be too.
Well Dee, my wife would agree with you that I'm a trouble-maker.
Internet stories are just that – stories. And I have read most of them. They mean nothing. Anybody can make up anything on the internet. I could be an eighty year old woman for all you know.
Its great that people on this site encourage and help each other. This board should be all about AP, but unfortunately sometimes the conversations veer toward other treatments and people start making uninformed statements, usually regarding an irrational fear of medications like biologics.
Why should people on this board be defensive? Of course anyone has the right to be defensive, but I don't see a reason for it. I would never be critical of someone choosing AP. We chose it once too. Yet, sometimes, others are critical of people who choose a different direction. We should respect each other's decisions, not belittle or scare others who are open minded enough to explore other treatments if AP is not working.
Trust me, Michelle and I are happy we found something that works for us, and I appreciate your kind words.
Joe
Joe – you are so right, anybody could be anyone and make up anything. What you wrote suddenly put into context a meeting I had yesterday with one of the newer roadbackers, JBJBJB. She is in Sydney visiting her sister and we met up yesterday. (She is lovely BTW and I'm so glad we were able to do that).When she first saw me, she gasped and said “You are just like your photo!!!!!” It is only today, reading your post, that the broader implications of her exclamation hit home. On this site, I could be anyone, could be 80 years old, a man etc etc. So I guess it was some comfort for JB to see that the photo I use as my avatar is a recognisable likeness to the person and to see for herself how very well I am. Because none of us truly know without some kind of proof. BTW, my story in my testimonial IS true. It is one of the reasons I came back to this Board after 3 years of enjoying my well-ness – so that people new to AP and/or still struggling with it have someone who still posts who has had success with it. I wish I could meet everyone in person. I will have the chance to meet some. For the rest, guess you'll have to keep taking my word on it. 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)
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