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I'm in Arizona. I joined up here last week. I requested the list of Dr's last week, but have't received any information yet and am very anxious to get going. I did some googling and found out about a Dr H in this area who sometimes does the AP. I got an appt with him next month and posted inquiring about him, but haven't had any response as to what other's experience has been. So I still don't know if I am on the right track or not.
Anyway, I had my appt with my regular rheum yesterday. I brought him the books I've been reading, (arthritis breakthrough, etc) He says he has done some studying up (I don't know how much) and says that the reason people feel the AP works is because the abx have strong anti-inflammatory properties, just like the Lodine. He feels that the big important studies (funded by whom Pharma? yes I know) all point to this being the reason people feel better on the AP. He said AP is basically the same as taking Lodine, but the AP is much harder to tolerate, and with the nature of my GI problems I wouldn't be a good candidate for that since the NSAIDs make me sick for the most part..Has anyone been told this before and went ahead to do the AP and got great results?? I'd really love to know, I'm feeling a little discouraged in a few different ways..
Not knowing if the Dr I am prepared to pay cash for since he isn't on my ins plan will actually do the AP and even whether he has a good rep..
Worried I'll spend all this energy, time and money and end up with major stomach pains..
Now not sure if the AP even works…:(Hi there,
I am just new to the program too, I am in my second week, Yahoo!! But I too have been taking anti-inflammatories for about five years, and my stomach is the pits. I have ulcers, and take something called Losec, I take one every time I take an inflamm, and must always eat when I take them, and having an empty tummy is not good for me either, the acid just starts eating away at my stomach. The Minocin doesn't seem to bother my stomach more than the inflamm, I take the three of them at the same time, and so far so good. Losec is not an antacid, maybe you could look into something like that, I have heard of others, pariet, rabeprazole sodium, ombrezole, I have had some close calls with these anti-flams, they eat big holes in my stomach, but these kinds of stomach pills really help me, and I haven't really noticed too much discomfort with the AP. I too had to pay for the doc visit, and everything else, it cost me a whopping $700, but this I do know, nothing else has ever worked for me, I have a raging disease, and at the age of 40, I have deformed feet, hands, I use a cane, I wear special shoes, I have nodules, big ugly ones all over the place, I have had allergic reactions to the other drugs, methatrexate, avera, plaquinel, sulfa, and toxisity to some, I have suffered so many sinus infections, and chest infections, and ear infections, and blah, blah, blah, These drugs have really taken alot out of me, physically, mentally, and left me with very little in the way of strenght, I found this website, and like you too, waited for the list, and then waited eons to see the doctor, and in the meantime, I stopped all the drugs, and just waited and hoped, and then finally I got the prescription, and you know what, I didn't want to take it, I wrote to the Road Back, and from the response I got, and from reading all the stories of success, and finding out why it works, the mechanism of the disease, I knew that this was going to be my only chance of ever having my life back, without too much side effects, and on week two, things are not great, but you know, they have been a whole lot worse, like the time I had a very bad allergic reaction to avara, I almost lost my arm, in the span of 48 hours, and so far, this antibiotic hasn't caused anything bad to happen to me, I have a whopping yeast infection, but I had that before I started, and well, that's about it really. I think you have to try it, from what I have been reading, I don't think we will be disapointed in the long run, I have heard people who have had complete remissions, I have never, ever heard anybody say that taking methatrexate, not one time!!! I know that this road is not going to be an easy one, it is about educating yourself outside the box, and taking your disease into your own hands, and as hard as it is going to be, trusting people you have never met before, simply because they all seem to be getting better, and I have read about some of other who have stomach problems, everybody just reaches out with suggestions, and it's just the most amazing place I have ever found…I am really sorry for the novel:blush:, the way I see it, if it works for all of them, then it can work for us too!!! If you type in stomach probs, or whatever, you will find alot of the answers you are looking for!!! Good luck, I hope your doc turns out to be just what you need, Hang in there, don't give up, and what one very smart cookie said to me essentially was this, what do you have to lose?? Take care, sorry for ranting, really!!
GlitterGirl
Hi MissyB,
I was told the same thing by a traditional rheumy…that it is simply a strong anti-inflammatory. So what if it is? If it works isn't that all that matters regardless of the mechanism of why it works?
I went to see Dr. T in Boston, he is the head of rheumatology at Harvard. I have no clue if he feels that it is working as an anti-infective, dmard, or anti-inflammatory, but he believes it is the best thing for me.
So far, so good for me.
No one can make the decision for you…but the “oh it's just an anti-inflammatory” line doesn't hold water for me. In my opinion…whatever works, whatever helps me, whatever reduces damage, whatever doesn't hurt me, however mechanism it works by, is more than all right by me.
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
[user=551]Missyb[/user] wrote:
He says he has done some studying up (I don't know how much) and says that the reason people feel the AP works is because the abx have strong anti-inflammatory properties, just like the Lodine. He feels that the big important studies (funded by whom Pharma? yes I know) all point to this being the reason people feel better on the AP. He said AP is basically the same as taking Lodine, but the AP is much harder to tolerate, and with the nature of my GI problems I wouldn't be a good candidate for that since the NSAIDs make me sick for the most part..Has anyone been told this before and went ahead to do the AP and got great results?? I'd really love to know, I'm feeling a little discouraged in a few different ways..
Not knowing if the Dr I am prepared to pay cash for since he isn't on my ins plan will actually do the AP and even whether he has a good rep..
Worried I'll spend all this energy, time and money and end up with major stomach pains..
Now not sure if the AP even works…:(Well my Mr Perfect hasn't been on it long enough to know if it works yet either. But on the other hand, it's an ANTIBIOTIC that also has anti inflamitory effects. So the antibiotic is there doing something.
My Mr Perfect takes large doses of MSM for the inflamation, so we haven't had to deal with the herx effect. In addition the MSM controls the yeast so there aren't any yeast problems.
We have identified his bacteria, and we are tracking the infection tags in his blood stream.
In one year we will redo the PCR test panel to see how the bacteria are doing.
Will let you know then if it's just the anti inflamitory effect or the fact that it is after all an antibiotic.
Worse case scenerio is that we've replaced nasty, expensive, dangerous, tumour causing medications, with a simple cheap antibiotic, with significantly less serious side effects.
Not a bad deal either way
Regarding paying cash. Please negotiate with the doctor.
A typical doctor supposedly charges around 125 dollars for a visit, but only gets paid 41 dollars by the insurance company (including your co-pays if any). Thats for my area of course. (I pay a 35 dollar co-pay, and the insurance sends them 6$-) The full PCR panel supposedly costs over 3000 dollars, my insurance paid barely over 900 dollars. ( I don't have a co-pay for tests)
So if they accept insurance of any kind, treat yourself as a self insured person and negotiate for at least 50% off. I can guarantee your insurance wouldn't even have paid them that much.
Also check for out of network provider clauses.
We get around the “not typical treatment” clause by calling it a bacterial infection, rather than RA treatment. Haven't had a peeps worth of trouble about it.
Blessings
Jo
If tetracyclines were the only antibiotics that are effective in fighting RA, then one might believe this anti-AP illogical non-sense. But quite a few other antibiotics work too (zithromax, clyndamicin, biaxin, etc.) .It's very hard to believe that such disparate molecules work against RA (and scleroderma and lupus) only because they are anti-inflammatory.
Granted, minocin has a mild anti-inflammatory effect. I have felt it myself. Taking a teaspoon of turmeric powder or a pill of ibuprofen is even more anti-inflammatory. But only the antibiotics bring remission to connective tissue diseases.
I think anti-Ap rheumies are anti-scientific and pseudo-scientific. There are literally thousands of testimonials on the internet of people who achieved remission using AP. These data points disagree with the theories of anti-Ap rheumies. Real scientists don't hide or ignore or suppress “odd” data points that disagree with their pet theories. Instead, they study vigorously those odd data points, (something anti-Ap rheumies aren't doing). They modify their pet theories to accomodate ALL the data. Then they test the new theories in the lab.
[user=26]superperro(RA)[/user] wrote:
If tetracyclines were the only antibiotics that are effective in fighting RA, then one might believe this anti-AP illogical non-sense. But quite a few other antibiotics work too (zithromax, clyndamicin, biaxin, etc.) .It's very hard to believe that such disparate molecules work against RA (and scleroderma and lupus) only because they are anti-inflammatory.
Also, along this train of thought, I would like to add the question to ponder, “If the AP drugs are only anti-inflamatory, how can it be that some people are able to go into full remission and stop the medication permanently without the disease returning?” It is my understanding that anti-imflammatory meds would only work when they are in the system, not months, years and decades later.
As was said above, this is a treatment that one must choose for ones self. If you do choose it for yourself then find a physician who agrees with the path you have choosen and do it.
Cheryl F
Hi
If the Lodine is helping you whatever the reason you should stick with it and forget about AP –if you are not feeling better on Lodine then perhaps AP is worth a try –the question is –has the Lodine helped you or not —for whatever reason the action is –anti-inflammatory or anti- bacterial —Either you are feeling better using the very knowledgable doctor you are currently using who is equating lodine with AP or you arent feeling well and need another approach —-
Richie
I appreciate all of your replies, and they were exactly what I was hoping to hear about. Other people who have been told the same thing, and went on to success. I said I have my appt with the the Dr who says he *sometimes* (his words) does the AP and I'm keeping it since he was on the list of Dr's rec for Az.
I don't know what he means by that, (“sometimes”. because I would really hate to waste all this money if he decides he doesn't think it's right for me or something) I almost feel like I've entered some underground world (pssst,, hey buddy, ya know where I can get some good AP? :P)
I also really appreciate knowing about all the other kinds of antibiotics that work for this, since I had only read about the minocin.
I have to be honest, Richie, I'm not sure how to take your comment re sticking with my “very knowledgable Rheum who equates lodine to ap”, it almost seem sarcastic. I'm assuming that being regular here at the RBF, you probably have a lot of experience and knowledge about AP and would believe it does work. Sorry I can't pretend to know as much as everyone here, I've only known about these therapies for a week, and I'm trying to learn, really I am just learning about all this. I don't want to get in “Rheum fight”, but I respect my Dr even though we may have a different opinion in this case, I may have mentioned that in the 5 years I've been ill, he was the first one to stick up for me and acknowledge that I had a “real” illness and the only one to even try to help me.
My hope is I can do the AP elsewhere and go back for a check up with him and report my hopefully great experience in hopes he can learn from it..Hi Jo,
My name is Lori and I have been on AP for a little over 3 months now. I'm doing great except for a yeast infection that I can't seem to get rid of. You mentioned that your husband uses MSM to keep the yeast at bay. I also take MSM but only 3 1000mg a day capsules. I was wondering how much your husband took. I don't really know how many I can take or should take. Any help you could give me would be greatly appreciated! I also take probiotics.. 8 capsules a day… Just doesn't seem to be doing much for me! Other then the yeast problem, I am feeling wonderful!
Lori
That doc is a willing participant in a game of medical peer pressure. He probably doesn't want HIS patients taking the uncool drugs.. Maybe if his co-workers or collegues find out one of HIS patients is taking A.P…. they'll think he's not so cool anymore.
And ((another rant)) what's this about *letting you take A.P.*… It's your choice, not his. He's not in control of your body or your meds. You pay for them. Tell him what you want and he'd better do it. We keep our panties in a knot in this country saying we can't ever socialize our medicine cuz then we wouldn't have control… WE DON'T have any control in this system. For the most part- we give it all away.
I don't care why it works… I didn't realize there was a 'shameful' category for a drug working. I mean, it seems so high school for a doctor to qualify a drug for what amounts to 'appearance', imo. Like, A.P. isn't *COOL* so don't bother with it. Some days I think modern medicine has really hit rock bottom… time to go back to bleedings and fingernail removals for our illnesses.
I had a horrific case of gerd prior to A.P. I healed the holes in my stomach and take my A.P. at night with a half a glass of water. I sit up and read for a half an hour or so, then lay down to sleep. I've only had one or two times where it got me and each time was because I didn't sit up long enough or take enough water to wash it down.
Good luck. I think A.P. is the best.
Hi
It was sarcastic –aimed at your doctor —what has he done for you in 5 years ? –Has he improved your situation –yet here he makes a pompous conclusion –It will be the same as lodine ==Obviously in 5 years you havent done too well or you wouldnt be searching for another alternative —I have run across and read about many many pompous doctors with big reputations in treating scleroderma who ac tively adopt a very negative approach to antibiotic –these very same doctors are the ones contributing to the 60 % mortality rate for SD in 10 years –Yet the forward looking doctors who use AP most likely have the same success rate as the Harvard doctor whose preliminary results resulted in an 84 % success rate –me included —-Incidentally this is very far from a back alley treatment -the major problem in RA being the pharma lobby pushing the biologics –while in scleroderma folks who arent on an antibiotic therapy slowly but surely contribute to that 60% mortality rate–Try and have your rheumy check the ACRS list of Dmards as well as the Mayo clinics list of DMARDS for RA —but then again I guess Mayo is not as on their game as that rheumy –Incidentally –when you are going to the new doc –you have no assurance that antibiotic will be used –many many of the rheumatologists who use antibiotic will also utilize other approaches if they think it is better for you.
Richie
[user=16]richie[/user] wrote:
I have run across and read about many many pompous doctors with big reputations in treating scleroderma who ac tively adopt a very negative approach to antibiotic –these very same doctors are the ones contributing to the 60 % mortality rate for SD in 10 years
Richie, this is such an insightful comment. I am currently reading Pamela Weintraub's (writer and editor of Discover Magazine) new book called, “Cure Unknown – Behind The Lyme Epidemic.” It's a fascinating chronicle of the history and politics behind Lyme. In the book, she says that as a writer for a prestigious magazine, it never occured to her when writing her articles to interview anyone but the most highly regarded scientists and physicians at all the larger, well-known research institutions, hospitals, etc.
Living in Westchester County, NY (a highly Lyme endemic region), it was only when Weintraub's whole family, beginning with her young boys, became chronically ill….so ill that the whole family eventually could no longer go to school or work, that she began to have a different view. It took a decade of haunting specialists' offices and getting numerous diagnoses for the them all, before one of her sons finally tested postive for Lyme…of the charts Lyme. Due to the length of time they were all ill and the degree of chronicity reached, the whole family still struggles with this disease, though all, but her eldest son, have reached semi-remission.
Since discovering that there is such a thing as chronic Lyme, she's made it her goal to document what is going on in the medical and scientific world surrounding this controversy, a world largely dominated by the big names…the so-called experts, who are really the only ones who manage to get their papers published in the big name science magazines and medical journals, like The New England Journal of Medicine.
However, in her struggle to get her family proper treatment, it quickly became clear to Weintraub that as a science/medical writer, she, too, had been blinded by the lofty big names in the science world, all of whom basically have the monopoly on what becomes the estabished “paradigm” in this world. Going all out to research for her book, she sought out little known researchers and physicians all working in their small, ill-funded and run down labs and offices, only to discover that some of the best science and breakthroughs are coming out from the fringes….but that these studies never make it to the bigger publications.
It's quite mind-boggling when you really think about it. For anyone interested in the Lyme controversy and what is driving it from a historical perspective (as well as some pretty incredible case studies and research), this is an eye-opening good read.
Peace, Maz
I think I am seeing the doc you are taling about. Dr. P H. I started AP with him in JAN. after I was diagnosed in NOV. and went to 3 local docs. I told him what I wanted to do and he is doing it. He does not believe in the infectious theory, but that it works as dmard. I could care less why, just that he is doing it. I was pretty much bedridden in a fast timeframe. It went to my hips and my c-spine. He gave me prednisone to hold me over during the several months it would take to see if ap would work. He gave me a tapered dose and when I went down to 5mg I had to go back up. But at the same time I had to discontinue voltaren due to liver issues with that rx. Went back to 10 mg and had some issues in april and he upped it to 15mg. I toughed it out and never went up. I am doing pretty good right now and will start tapering pred after 4th of july. After where I started this winter I think the 10mg pred and ap is great. No way was I this good with 10mg pred, ap and voltaren. We will see after the taper starts. I saw 2 other docs and one may have done this as he wanted to start plaq but he quit taking my ins. The other doc was only metho and I knew he wouldn't go along. I chose dr. H because his office is next door and I caught him in the parking lot and talked to him. He will flat out tell you that the infectious part is hogwash but he will do the treatments. He still tells me he would be on metho but oh well. He is a nice guy and just tell him you want to try it. I just didn't know if he would go along with the pred but he did to get me through. I have a lot more info if you want to private message me. The treatment routine and cleocin IV's etc. I do my last round of IV's in July. I looked into going to CA or IA and decided to stay close if I could. I can talk to him for you if you want.
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