Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Hello. I'm new to this group and I'd be interested information in this also. > i'm looking for suggestions for alternatives, nutrition, herbal, > holistic etc.. heard of " beyondprobiotics " , " healthline " , ;but that's > it, besides one md beyond my financial capabilities. i'm in nyc, > you'ld think it would be the alternative med mecca, but m;y knowledge > in this area is limited. anybody with some ideas? i'm open. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 I guess the bottom line for me is that if there was real scientific research that backed up this doctors claims, I might get mroe excited about it. But I just take a chance with my joints on an unproven treatment, when there are well researched treatments available. RA and PR a two very different animals. RA in most cases is a life- long, chronic disease. It doesn't go away, and without aggressive early treatment, it can be crippling. PR goes away eventually, even without treatment. That's not to suggest that people with PR do not suffer tremendous pain, nor does it suggest that they shouldn't seek whatever treatment they think is best for them. But the long-term stakes are not nearly as high. I have done some looking into antibiotic treatments for RA, and from everything I've read, the RESEARCH seems to suggest that although certain antibiotics can definitely help with the inflamation, they are NOT treating an underlying disease, and when treatment is stopped, the symptoms usually return. Antibiotics also, from what I've read, are not disease-modifying drugs, meaning that the damage to joints and organs can continue, even though the person is feeling better. I'm glad that the two people you mentioned are in remission. That's what we all hope for. But a sample of that size just doesn't convince me. You wrote: > Some of these drugs seem to have horrid side effects, & most of > you have not gotten better. It is true that RA drugs CAN have bad side effects. That is true of ALL drugs, including Tylenol, and, yes, ANY kind of antibiotic. But not all people experience side effects from every drug, and if you are monitored carefully, (which should be happening anyway if you have RA) very few side effects are not quickly and easily reversible. And there are enough treatment options that most people eventually find something that works for them, and doesn't have side effects. As far as the statement that most of us have not gotten better, that's simply not true either. Many people here had RA way before they had the good drugs that are available now. They already have irreversible joint damage. Sadly, for those people, all that can be done is to try to prevent MORE damamge. But your antibiotic treatment certainly isn't going to fix damaged joints either. For newer folks, it does take time to get the right meds and get them working. But there are many MANY people with RA who do very well on their meds. I think that one " problem " with this BB (if you look at it from that perspective) is that people come hear when they are having a particularly bad time. It's fabulous that the BB is here as a resource for those times. But it also means that you hear much more about things NOT going well. Most of the people who have their RA well under control are off living their lives, and not posting on this board. I really hope your treatment is all you hope it will be, and I hope you share your progress with us. But I hope this explains to some extent why people aren't rushing to jump on this particular band wagon. > > Is anyone interested in alternative treatment for so-called auto- immune > diseases? I was diagnosed with Polymyalagia Rheumatic early this > summer, had a biopsy to remove 2 " pieces of artery from each temple to > rule out Giant Cell Arteritis, for which I had symptoms. Negative. I > was put on 80 mg. Prednisone which made me a zombie, and also got me > addicted to it, so even though I'm down to 10 mg. Prednisone/da, I'm > still stiff and aching - and still going through withdrawal. My family > Dr's only recommendation is to increase Prednisone. I refuse to do that. > > My nephew and his buddy's mom were both diagnosed with Rheumatoid > Arthritis some years ago. They went through the Prednisone, anti- cancer > drugs, etc. from their Rheumatologist that I read some of you are > taking. Some of these drugs seem to have horrid side effects, & most of > you have not gotten better. First the mom I mentioned went to a family > Dr. in a small town in western IA who believes these so called > auto-immune diseases are caused by bacteria remaining undetected from a > previous infection, which " lurk " in the body and later attack the > joints, heart valves, eyes, etc. The medical community is now accepting > that Lyme Disease can cause arthritic disease and that antibiotics are > the answer. But they still stick with the standard treatments for other > arthritic diseases. The drug companies, of course, want to keep selling > new profitable drugs. Dr. Sinnott uses low dose, long term antibiotic > treatment, with minocycline and/or tetracycline. Long term meaning LONG > TERM. But he claims 80% remission rate. His patients say " cure " rate, > Dr. says " remission. " My nephew says " he saved me. " Drug companies > scoff at him. > > Dr. Sinnott believes that most of the drugs used in auto-immune diseases > treat the symptoms while the disease progresses. He believes one must > kill off the bacteria causing the allergy, which causes the body to > attack itself. He has used this therapy for decades and treated > hundreds and hundreds of people from many states and 6 foreign countries. > > I begin his treatment Oct. 10, probably with 2 IVs a day for 5 days, > then oral medication for a long time. > > I've posted this before and no one seems interested even though some of > you are suffering so much.. If you're not getting relief from what you > going through, at least look at these websites. My only interest in > this is regaining my health. > > <http://www.sinnottandtobenmedarts.com/>http://rheumatic.org/started. htm > http://www.sinnottandtobenmedarts.com/ > > <http://www.sinnottandtobenmedarts.com/> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 > > I've been on it for almost two years, so I can't really remember how > long it was before it took effect. We really should write these things > down, LOL. I had been without a DMARD for a month waiting for my > insurance company to approve me for the Enbrel. As I remember, it > wasn't long before the Enbrel got rid of the pain and inflammation that > had built up during this time. I'm sorry that I can't be more specific. > Just give the Enbrel a few weeks, and I hope that it will help you as > much as it helps me. > > Sue > Sue-- Thanks for the reply!! I know what you mean about writing things down! I hope you get everything worked out! Dealing with the insurance companies on top of everything else really is the pits! dordale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Oh, it's been worked out for a long time now, and my insurance company is paying for most of the Enbrel. I pay $50 a month, which is a bargain because of the way it helps me. And I wish I had written down when I went through menopause, because I have to fill in that info every year when I have my mammogram, LOL. I just ask them for my last year's questionnaire so that I can copy my answers from that. Sue On Saturday, October 7, 2006, at 11:01 PM, dordale8 wrote: > Sue-- > > Thanks for the reply!! I know what you mean about writing things down! > > I hope you get everything worked out! Dealing with the insurance > companies on top of everything else really is the pits! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Yes. I wish I had tried it earlier in the game. Sierra > > > > --- In , " Randall " <krandall@> wrote: > > Antibiotics also, from what > > > I've read, are not disease-modifying drugs, meaning that the > damage > > > to joints and organs can continue, even though the person is > feeling > > > better. > > > > No, that's incorrect. Minocycline is recognized as a DMARD. > > > > Sierra > > > Quote Link to comment Share on other sites More sharing options...
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