please I need info went to the web sie roadback but didnt get much and have hard time sitting long enough to read books get to blurry eyed. Please can I talk to someone who is using this way?
You can talk to me by PM or if you want others to jump in - just ask a question and we'' be here to help.
Hugs,
Pip
I pm"d you earlier, am looking for info and optionsSweetie - I just figured out my PM was full and just emptied it. Can you resend? Or repost. What ever make you feel more comfortable.
Pip
Hi doobgirl, glad to see you're back! ty for responding am just looking for answerrs as to why you all picked ap versus the others? was the effects( which sound scary as hell) or is ap cheaper cause I cant afford embril or humira even with my insurance because I dont quslify for subsidy our income is just alittle too high. It would cost me 530$ a month just for the e=mbril alone. Also it makes more sense to me that if your immune system is screwed up then fix it dont shut it off. I have celiac disease too which is an aottammune disease ( I am a yterrible speller and typist) My dad had rh and had it most of y life till he passed of complications due to it so I am not new to the disease just new to the treatment availabilities as my father did not have many optiions in the 70s and 80s.I remember him trying massive quantities of garlic and acupuncture but mostly he was prednisone and asprin and pain pills, his disease was very agressive and extreme as I am sure mine will be. as I am acout the same age he was when he started -44 and my rf levels are 408 right now and I have had this about 4 years as I can tell by the way I have felt. I won my disibility case with social security 2 years ago because I cant stand for long or use my arms long without much pain. they gave it to me because of my weight but I have been heavy akll my life. I know I need to loose weight but how do u exercise when it hurts too much. oh well Has this therepy been working for you? Will any one tell their ideas and thoughts I would appreciate this either by pm or here or I can give email address thriough if that is better? thanksWe wanted AP for our daughter because we saw it work for her when she was initially treated for an infection. When they couldn't 'prove' an infection, the antibiotics were stopped, but we knew it wasn't just a coincidence that she had done so well on them.
You will need a doctor for any treatment, and AP drs. also treat with traditional meds like mtx and Enbrel. Sometimes people need both. If our daughter's disease progresses, we will add a biologic. AP does not close the door on all other treatments, but I think most people on AP do have the hope that they can use the traditional meds less.
I think you need to learn more about antibiotic therapy (not just people's experiences, but how it works), then talk with your doctor(s). People's experiences should encourage you to learn more, but you have to understand it for yourself and of course have a doctor to treat you. Take care and good luck!
doobgirl- have you been able to get on Medicaid? I was place on disability for the RA 2 years ago and have just qualified for Medicare which I will start in October. Although the premiums can be a bit high with just my diability income, there are programs that help with those costs which a member here pointed out to me. I'll send that link to you through PM if you'd like. It would help with the cost of the medications if you decide that the Humira route is the way you would like to go. I would also like to hear more from Pip and Gimpy about AP therapy as well. I think there may be others on the board who would also like more info so I would love if we could keep this thread going. I have tried reading Road back however my 2 yr old daughter doesn't allow me much time.Hey DoobGirl,Hi, DG:
If you don't want to read the book, I really recommend you start by reading the scientific studies, articles and case studies. Start by reading all of the scientific studies and articles on the RB board and and rheumatic.org. You should be able to find the information you are looking for if you click on the article links. You should be able to google the title to get the full study on pub med.
http://roadback.org/index.cfm/fuseaction/studies.sub/subgrou p_id/16.html
http://rheumatic.org/studies.htm
I'm sorry to say, but reading and learning is really a necessary part of this treatment. I do strongly advise reading the book The New Arthritis Breakthrough by Henry Scammell and The Infection Connection.
Here is a link that is helpful to newcomers:
http://www.roadback.org/index.cfm/fuseaction/education.sub/s ubgroup_id/8.html
You might also like to read all of the patient testimonials on both sites.
Take care, Karin
For me I really lucked out in how this disease played out. I was under extreme stress and during this time my dentist told me that an abscessed tooth that we'd been trying to keep had to go. He pulled it and 3 weeks later I went back to him and said 'what did you do to me'? He said it wasn't him but sent me for a CAT scan and the doc there said "any other autoimmune responses, come back and see me". I was like ??? But I kept going to the ER every 6 months with excruciating saw your arm off pain. The docs could never figure out what was going on with me...but eventually diagnosed me as Palindromic RA. And the entire time I'm saying...no, it's the damn tooth.
I was about as freaked as possible - I'd just cared for my husbands aunt who had died from complications to RA. I mean...I was not going that way.
I'd found an case study about AZT 'curing' 'early onset severe' which was my diagnosis. Of course, no doc would give me antivirals. My OB/Gyn said 'but if it's bacterial then antivirals won't help" and again, we're back to that tooth. They were treating it with ABX (antibiotics). So - still freaked, I decide to do both! LOL
Anyway - I concentrated my research on antibiotics and RA because there isn't a lot of research out there for PRA and kept hitting www.rheumatic.org. I'd read the medical histories. Eventually, I found the link to www.roadback.org and told my hubby I'd found a RA cult. But I kept coming back to them.
Like Doob says "if your immune system is screwed up then fix, it don't shut it off". I couldn't deal with the idea all the treatments in use were treating symptoms. The only group that said they were going after the cause was the Antibiotic Protocol people. I was in.
The 25th of this month is my year anniversary on AP. Know something funny, all of us on AP know the date we started. I think its symbolic in a way. LOL. In many ways I am in better condition than when I got sick - I've done things (ice skating) that I hadn't done in decades. But I'm not all of the way back. I am now convinced that the only thing left to total 'repair' of this RA is to 'heal the gut'. There is way too much research out there linking hyperpermeable gut linings to why we get sick in the first place. But if you're asking how AP worked for me - the answer is 'like a charm'. I was an early responder (like hitting the AP lotto) and think it was because I was newly diagnosed and not on the traditionals. I think it will work for everybody (MY OPINION) - but it's a lot harder if you have more to 'undo'.
So, Doob, that celiac thing needs to be addressed. An inflammed gut will keep you from healing all the way. You should still get a heck of a lot better - but - here's an interesting Celiac Opinion Piece.
AP is usually a lot cheaper. It's an off patent med which means you can get the generic. Lot's of us with stomach issues (Doob, that's you too) want the Brand because it's timed released and easier on the stomach. I've not been on the biologics but the money number you posted seems low to what I've seen here. My insurance co. realized I was on Brand and pushed me to go to generic by refusing to pay for the Brand. I'm a stubborn cuss and and am fighting them - but until I can get them to agree I now get my Brand from Canada. I pay 4 I think for a 3 month supply. Generic is something like to with a co-pay.
Doob, my AP doc told me the high RF factors was a good thing - he said it meant my body was fighting like heck to beat the disease but it was losing; but it was fighting hard. I was 706 RF when I started AP. I'm down to 286. The nutritionist just told me I had 'good genes' because I'm pretty much pain free now - but we can see I still have a lot of inflammation. LOL
Dr. Brown said eventually your body will reset to the correct weight when you are on AP. If you're overweight you lose; if you're under you gain. I've lost about 25 lbs since I started AP but have not exercised. I just started going to the Gym last week but missed my appointment today. Sigh. It will become a routine because I have a lot more to go. And I figure, if my body wants to lose weight right now, I'm helping it along! :-)
I think aqua aerobics is probably the best exercise we can do. The water gives resistance and helps protect the joints. That and we don't get that yucky sweaty feeling. LOL
Steph - I hope Karin sees this thread. Her RA came on after childbirth too.
The reason APer's push reading the Roadback is that the more you know and understand about what is happening to you and understand how to get around setbacks the better chance you have of making this work for you. You see over and over new people post the same types of questions and get a variety or suggestions and there is a lot of support. Its really hard to get rheumies to support you (heck I went thru 10 docs trying to get one willing to monitor me). You kind of have to take control of your health. This can be VERY empowering but to be honest, it's tiring. :-)
But the end result is wonderful!
Pip
now are there certain "regular" meds that you cant be on while doing AP?If you're referring to the RA meds - I think you can take them all - but understand - AP is not a pain pill. The point of AP is to get off as many of the other meds as possible. I wish GoGo were here - she's doing a really good 'wean' on MTX. I think some of the others are weaning the biologics - but I have no idea how that would work. Are the Biologics monthy injections? Do you slowly stretch the time between shots down?
Pip
Pip,
Thank you for that explanation. I have wondered about AP and really didn't have a chance to read roadback. I will try when my daughter is otherwise occupied which isn't often.
Pip
P.S. You have to lurk. Seriously, they speak Greek. I couldn't understand half of what people were talking about when I got there. Could have been part of my hysteria. But over time it kind of starts making sense. In the beginning all I did was look for 'patterns' because at that point I was the only PRA person there and I didn't know if it would work for my disease. Takes a while to really understand it's all the same infection that manifests differently.
Wow, thanks for these explanations, Pip, Suzanne, and others (I'm sorry, I can't see the first page of posts as I'm typing this, so I don't want to leave anyone out).
I've been wondering more and more about AP myself. I am not truly diagnosed with RA yet (negative blood tests), but have all the physical symptoms, and my first appointment with an RD is on September 5th. I want to go in with the right questions. I am more terrified of the treatment right now than the actual disease, truth be told.
I do have a question about physicians. I'm currently being treated for Lyme's (highly doubt I have it, but my GP thought it was something to do while I waited for the RD appt, I guess). Anyway, I joined a Lyme's forum, and they refer to physicians who are familiar with treating Lyme's as "LLMDs" (Lyme's literate doctors)--there's a whole network where people on that forum refer you to a doctor they know near you who is familiar with the disease.
Is there something similar when you want to do AP? I've read on this forum that some doctors discount it, so is there any way to find an RD who is known for using AP, or is it kind of a hit-or-miss kind of thing? I live near Johns Hopkins in Baltimore, so I'm wondering if I should check there for some AP studies.
Sorry this got so long, but thanks in advance!
Christina
Pip,
Yes, non-medicine, no pains except a little when it rained or snowed and no flares. My main problem area was my hips and knees. I had no cartiledge in either by the time I reached 9. At 11, the doctors decided I needed a total hip and knee replacement on both sides due to that. It took 6 months for them to stretch me out. I had been in a wheelchair primarily from 9-11 yrs old because walking was just too painful. Being in that sitting position most of the time had caused me to curl up so they had to straighten me out before they put in the artificial joints. I spent 6 months in the hospital straightening. Then another year having operations on all 4 joints and learning how to walk again. After those operations, I went into the remission which lasted until 2004. Then the problem hit my left shoulder. No replacement for that yet though because the pain is controlled with my RA meds. The orthopedic surgeon wants to wait until I have more severe pain not controlled by meds. Which I am completely okay with because I can't stand hospitals. When I had my daughter, I had a C-Section and was in and out of there in 2 days. I was determined to get home quick. Afraid they'd decide to keep me again. LOL I've been very lucky with my RA and I know it.
Okay, now I have another question for you. What is PRA?
Christina - Yes, there are AP drs. Some are rheums, some are not. Ours is not a rheum because we could not locate an AP ped rheum (hard enough to find a ped rheum!), but he is a board-cert pediatrician and we still see a ped rheum.
Minocycline is an approved DMARD by the American College of Rheum., but it seems like many rheums are resistant to it because antibiotics can take longer to work. That is the impression I get.
If you are interested in learning more, the Roadback board is really the best place, but like Pip said, you have to lurk, lurk, lurk LOL.
Suzanne and Pip: I didn't lurk! I just jumped in and started asking questions. It probably would have been better if I had read the book first. I did read all of the articles on the board in one night, then started asking questions. But the questions I was asking were more about personal decisions rather than scientific regarding or the mode of action of the antibiotic.
Pip: JRA goes into remission much more often than regular RA. So it is not that rare that Steph went into remission.
Take care, Karin
Christina -
How in the world did you get a doc to treat you for Lymes if he wasn't a LLMD? That's a feat. I agree with what you said; just read a really cool article about the 2 schisms in the Lyme treatment world and personally agree with the LLMD's. Too many posts from people say it works. Did the doc do the IGeneX test which I understand the only real definitive test?
My guess is that most AP docs are also or are at least familiar with Lymes. I know my AP doc is and one doc in my old state was. LOL Statistical sample of 2.
When seeing an RD to talk about this - the more you know the better off you are. The best example I can give is my mom who was supposed to start AP for IBS. Her doc said he was against it because of Minocin induced Lupus. But I was standing right there and was able to say "but if she stops the med then it goes away, right?" and he was forced to admit "well, that's right". While I've heard stories of people who had docs just write the scrip, my experience is not so rosy. Knowledge is power.
One way to get knowledge is go to the RB and see the synopsis of the studies. Then Google key words in the studies so you can find the original. Then print them off and be ready to hand them to the doc. Also, the New Arthritis Breakthrough by Henry Scammell is a great place to get a feel for the process as well as more info and detailed studies and the politics behind this.
I see you missed my "The John Hopkins 'ask the expert' is a moron" post. LOL I think of it this way - I recently saw something totally traditional and anti-AP about Harvard - and that's where Dr. T and all the ground-breaking Minocin and Scleroderma studies have been done. It's the individual doc - but institutions as a whole are mainstream.
Steph -
So you had severe and it went into a 20+ year remission? OMG! All I have to say is you must have some darn good genes. I've never heard of a 20+ year remission in anybody. The most I've been able to find is a PRA person who went 10 years. In my non-doctor opinion you have something in you that wants to do what it's supposed to do. Seriously, my next set of research is going to be on 'remission' and factors that influence that. I'll send you anything cool I find.
Palindromic RA is the mystery RA disease. There is a big schism in research; if we are a subset of RA or a conpletely different disease. It's differentiated by the fact that the 'attacks' come and go (at least in the beginning) in a day or three of unbelievable pain with long times between attacks. I mean begging to die pain. My attacks were 6 months apart. The attacks are asymetrical and hit the big joints first leading ER docs to say 'bursistis' or some such nonsense. We get a lot of neuro problems which I think might be related to a study I saw that said the pain levels in PRA is something our bodies do trying to isolate the affected joint (sorry, but when I read that I immediately went 'infection'.) Eventually the whole process becomes systemic like all AI diseases. The most interesting thing in PRA is 1) its remission rate and 2) the fact that we do not necessarily get joint damage.
Of the people with PRA 50% resolve and they probably didn't even realize it was PRA. Of the remaining 50% about half remain PRA for the rest of thier lives while the other half goes on to regular RA.
I went straight to regular RA within about 4 months (I should have had years as straight PRA) - probably because I was poisoning myself with Aleve (toxic amounts) and my liver wasn't processing toxins. My official diagnosis was 'early onset severe' which I think translates to 'why you are on a walker only months after diagnosis'. On AP my disease has 'rewound' enough so I'm back to PRA so I'm feeling very hopeful.
Karin -
LOL - I didn't even know they had studies on the site for a couple of months after I found them. All my research that lead me to them was totally independent.
I agree about the JRA - but you have to admit, most of the posts from JRA say they are 'less severe' than RA. And she got 20 years? Suzanne - in all your research, have you seen anything like that? And that is came back before she got pregnant.
Pip
[QUOTE=Pip!]Christina -
How in the world did you get a doc to treat you for Lymes if he wasn't a LLMD? That's a feat. I agree with what you said; just read a really cool article about the 2 schisms in the Lyme treatment world and personally agree with the LLMD's. Too many posts from people say it works. Did the doc do the IGeneX test which I understand the only real definitive test?
[/QUOTE]
Pip, I should have added the disclaimer "term used loosely" when I said I was being "treated" for Lyme's. My doctor is new to medicine (I was assigned to her when my regular GP of 8 years left to get married and no one bothered to tell her patients), and it distresses me to say that I have no faith in her. I need to find someone else, but I've been sidetracked with trying to find an RD.
I'm on 200 mg/daily of doxycycline, and if I did have Lyme's, I've read that I should be on double that or on a different and more aggressive antibiotic. I tested negative for Lyme's and have no symptoms other than knee pain that really jive with Lyme's. This GP basically implied that she was going to treat me for it as I wait for the RD since she doesnt know what to do with me (all of my blood work for Lyme's and RA has been negative, but that doesn't mean much for either disease, as we know).
If this RD really thinks I don't have RA, I'm going to seek out a LLMD and pursue the IGeneX line of testing. I've only had a Lyme's titer, which is notorious for false negatives.
Thanks for the info!
Christina
Yeah, I fought (and lost) the Great U on the Igenex test even tho I was willing to pay for it. I tell ya, these guys can't make a decision without some paperwork result of a test in front of them and we're the ones who pay because it can be years before the tests come back positive.
The good news is...if it's Lymes it's curable.
Pip
Pip - about JRA and remission - I think it is as varied as with adults. I've also come to decide, if it goes away when you are younger, it comes back with a vengeance when you are older. I have accepted that no matter how well things go, it can always change at any time in her life.Pip,
Yes, I have severe arthritis affecting every joint in my body except eyes. I feel that because my legs were the worst affected by the JRA that after they replaced my problem areas it allowed me to go into remission. As for good genes, I don't know but I think I must. I rarely get sick. maybe once a year with a 3 day cold. Knock on wood! I may be jinxing myself here. During my pregnancy the RA all but vanished. I could reach the floor for the first time in ever. I had no idea what was going on. Asked RD and she said it was normal but possible flare up after delivery. Which was true. I did flare up for about 3 months after giving birth. I couldn't even stand at the sink to do a dish. Fortunately that went away. But the detioration in my left shoulder has made it impossible for me to continue working. I can type on a computer but only for 3 hours straight and after that the pain is so bad that I can barely move my shoulder. It has the same symptoms as carpal tunnel.
Please if you find research on this I would be very interested.
OK -
Typing out loud here.
We know people on AP can go into medicine free remission. Usually people think they're 'cured' and last about 2 years before symptoms start up again - usually worse than before. But these are adults.
But some adults go on to be medicine free - and are never heard from again. We don't track people - dammit. What's the percentage? It's low...but it's still greater than natural remission rates, wouldn't you say?
Most adults get these diseases after a recent infection. With kids it should be the same. Like my daughter got vitilgo within 3 months of roseola.
With adults/older kids there is a spate of recent onset around hormonal influxes. Starting mense. Pregnancy. Possibly getting off BCP's.
In that faulty study that Lynn posted there was a theory put forth by the researcher tying probiotic and gut flora to cancer genesis. Aper's take tons of probiotics. Where is the hyperpermeable gut linings in all of this?
Why is there a researcher studying cystic fibrosis and working on stem cells to mend a hyperpermeable gut lining when...in theory...that is a purely genetic disease?
Suzanne - we're talking about a child here. With my own I'd be hesitant to experiment (much :-). But adults...there are ways of figuring out if it's a remission vs 'gee, I really want to think I'm cured so I'm going off the meds and see what happens" wishful thinking.
Steph - What I find I'll send you. It probably won't be for a bit - I'm stuck on the gut lining now as that's my next hurdle. So, tons of research to do there. LOL But I maintain what I said. I really think you have something in you that kicked in for a heck of a long time. Probably the record as far as I can tell. And even for 'severe' (which I was too).
Dumb question - but I'm assuming they put you on a ton of ABX for the joint replacements. Do you have a list of what all that was?
Pip
Pip,
Please excuse my ignorance. I have no idea what ABX is. Please explain.
Whenever you get the information is fine. Thanks in advance. It is quite possible that I have some supergirl fighting cell there that kicked in. I know even when I go into a flare, it's not very long. When I went out of remission all it took was actual RA medicine. That's when I started on Naproxen and plaquenil again. I hadn't been on that since my joint replacements. Once on the meds, I stopped having issues entirely. And when I flared up again after delivering my daughter that only lasted a few months. Which from what I've read on this board seems like a relatively short amount of time for a flare.
Steph -
Sorry - ABX = antibiotics. We APer's get tired of typing that out. :-)
Were you always only on Plaq? Or just since it started up again? Wait...if you didn't have JRA/RA then you've never did biologics? That's what, only 10 years old?
So...if Plaq is an anti-malarial that kills a spirochette (bug) then...
Do you know any of your test results - like RF etc. Just wondering out loud. We can go to PM if this is getting odd. Sorry, you're just fascinating to me. :-)
Pip
P.S. I think the key to all this is the atypical people, not the typical ones.
pip I am really interested al;so as I have celiacs which has really been acting up. My ra symtoms are not all stemed to it though i wishPip,
No it's not getting odd. I have no problem in telling my story at all. I was on plaquenil as a baby and young child. I was on no RA medication at all since I had my joint replacements at 12. From then until 35 yrs old, I was on an occasional dose of ibuprofen, tylenol, aleve. By occasional I mean not even once a month. Sometimes if there were many days of rain or snow, I'd get stiff but nothing else. No pain. For all I know, it could of been the artificial joints rebelling when the weather got bad and not the RA. When I started to have the problem with my left shoulder in 2004, my RD then put me back on Plaquenil and added Naproxen. That's what I've been on since.
I have no idea what my blood test results are. Being that I've had this since infancy, I've always had someone taking care of this stuff for me. When I moved back to Mass from Fla last year, I lost health insurance so I haven't been to a doctor. I do have an appointment with my GP in 2 weeks so I can be referred to an RD. For about a year I've been treating my RA symptoms with Ibuprofen.
Off the topic a bit, I read the info you posted on another board about kidney failure when taking more than the recommended dose. I didn't even realize. Since reading that info from you, I've made sure to stick to the recommended dose of Tylenol. So, thanks for the info.
Back on topic, when I get in to see my new RD, I will make sure that I ask him/her what my RF factor is. Before I left Florida, my RD had said that my bloodwork had come back I little high. I had no idea what she was talking about and not wanting to sound stupid, I just nodded. Then called my grandmother who primarily took care of me as a child to ask what that meant.
Question for you: What other types of bloodwork numbers should I be asking about?
Is there any record or evidence to show that APX therapy is useful for sero negative?