This is going to sound simplistic, and a bit like I'm having a tantrum, but I was wondering whether anyone know what a cure for RA hasn't been discovered yet? Is it really very difficult to reprogramme our immune systems to stop recognising our bodies as the enemy? (I'm a physicist, not a biologist, so I really am clueless when it comes to this sort of thing and could easily be missing something obvious, so feel free to tell me!)
What is the latest research doing? Looking for cures, or more ways in which to manage the condition?
can't cure unless you know the cause.
the immune system is extremely complicated and adaptable so there is an awful lot we still don't know most importantly what sets it off...where is that broken piece...is it genetic, environmental, infectious or some combination. some people respond well to the antibiotic protocal so does that mean RA is bacterial but then someone else shows no response. For ever person who say food sensitivities cause it I can find you others with no food impact So in my opinion the breakdown is somewhere in the hard wiring of the immune system..and that broken wire is different in each of us.
If you read the abstracts you will see that focus is on both managing the disease and finding a cause and ultimately a cure. We hear more about the managing disease stuff because that means medications but these meds are being developed because of the findings of the initial cause studies
Almost everything out there is geared to 'therapies' which I translate to 'as long as we can keep them alive we can make money off of their chronic condition'.
I've only seen one thing ever mentioned a 'search for a cure' since I became ill. http://www.withinourreach.info/
There is a cutting edge research out there that is very promising. It's looking at an infectious etiology. Most of the new stuff is coming out of Vanderbilt and involves trials for MS, ALS, Parkinsons etc. That stuff is based all on the earlier work of Dr. Thomas MacPherson Brown that lead to the MIRA trials. The MIRA trials lead to O'Dells work. O'Dell is in charge of the 'search for a cure' stuff.
You can find similar studies at www.roadback.org.
The problem seems to be that the infectious agent, a mycoplasma, hides in the lymphocite (spelling) cells and it's really, really, really hard to get them all out of there. The medicine showing the most promise is Minocin - an off patent drug. Amgen (owners of Enbrel) at one time refused to donate Minocin to one of Trentham's studies for Scleroderma (a fatal disease) because it would interfer with 'other drugs they had. Hmmmm.
Now we're in the sphere of politics of Big Pharma.
That being said - unless a pharmaceutical company wanted to shoot itself in its own behind, the development of a new class of ABX to cure AI diseases is what is needed - a class that specifically targeted those lymphocite cells.
About 4 -5 years ago I read about the US offering Big Pharma 'credits' for working on new classes of ABX; something desperately needed because of overuse. I have never read of more recent work on ABX by Big Pharma.
So, the only thing that is going to get us a cure is if some hot shot researcher wants the Nobel Prize like Marshall did for H. Pylori.
Pip the pessimistic
P.S. Dude, you're a rocket scientist? You can figure this out!
Haha, I'm not quite a rocket scientist! I'm trained as an astrophysicist (hence the Orion part of my name) but fell into teaching and stayed there. Having said that, I am very tempted to retrain in medicine to go into research and seriously kick this conditions backside!That rheumy was a moron. (Sorry Cathy, had to do it). I love the way these docs distort what happens with Mino to steer you away from the med that really works. I've actully been told by people considering AP that docs have told their patients that they'd get hepatitis. Yeah, right, Mino will give you a virus!
If you had been on Mino for something else and the disease was already manifesting - you'd have herxed - ie you'd be having toxin die off. It would appear that it gave you RA, or at least a flare, when in reality you were killing mycoplasma and getting better as you lower the microbial load. My question is how many of us would be able to be ABX free if the first med we were given was Mino?
Ok, here's my new plan. You start AP. You see it works. You study the studies and follow the 'yellow brick road'. As you heal you become a fanatic like I did; go back to school and get a med degree so you can create a biotech company focusing on the infectious etiology. You crack that lymphocite problem and get the Nobel Prize and invite me to Oslo.
:-)
Pip with hope rekindled
P.S. There are a ton of posts here on AI about AP that are really informative. You'll get more of a feel for the politics. If you start lurking at the Roadback you'll learn more. But please don't leave AI - we need a science type and others to post their progress.
Your RD told you minocin caused RA? It's a whole new level of denial!yeah it is complicated , if it were easy then Pip's antibiotics would have cured us all by now. I theorize that there are several different illness currently categroized under the RA umbralla. One of these is disease with a bacterial cause which is why anti biotics work on some.
Despite some's cynicism, big pharma didn't just come up with these meds in a vaccuum. There are many many hard working academic scientists doing the root research on which these meds are built. As a scientist you know you must go into research with an open mind. Going in with a preordained conclusion equals bad science.
Ah, I take it he told me a big lie then re the minocin?Buckeye -
Very true about the open mind. What I am probably not making clear is the way higher education/med school works is that they teach what they've been taught. Remember at the beginning of the century the infectious etiology was the perdominant one. The invention of cortisone was the thing that got the whole gaggle of them moving to the 'auto-immune' overactive immune system theory. The ones with the open minds are not the people doing most of the research now. If you don't believe me - ask Orion. He's living in the publish or perish rarified air of 'academia' right now.
And if viruses can be a trigger - why is the NIH one of the only countries not looking into antivirals as a early treatment?
Pip
P.S. Buckeye - were you on AP at one time?
P. P. S. I totally agree about the different illnesses categoried under arthritis. That's a darn good theory IMHO
Gold and plaquenil are both antivirals, and yet "no one knows why theyAhhhh - that should have read NIH of the US one of the only ...
I don't know if they are consciously lying but they do know enough about Mino to have read the PDR and focus on weird obsure things that scare the hell out of you but gloss over the side effect of the biologics. It's weird at best.
I'll give you another example. There is an exceedlingly side effect with Mino of "medicine induced lupus". Docs say 'you could get lupus' Had one tell my mom that when I was standing right there and said 'but you can just stop the Mino and the lupus goes away' and he said, 'yes, that's right, but it's bad.'. However, I've seen posts on people getting MS on the biologics and it doesn't go away (which leads to a whole other set of questions for me) - and as far as I can tell, nobody has posted that they ever received that warning from their rheumy.
Politics.
Pip
[QUOTE=Pip!]If you don't believe me - ask Orion. He's living in the publish or perish rarified air of 'academia' right now.
[/QUOTE]My system was rebooted in a sense and since my stem cell transplantation
18 months RA FREE
18 Months MEDICINE FREE
or am I mis reading someone and only AP can save the world
[QUOTE=Pip!]However, I've seen posts on people getting MS on the biologics and it
doesn't go away (which leads to a whole other set of questions for me)
- and as far as I can tell, nobody has posted that they ever received
that warning from their rheumy[/QUOTE]
EEK!
My rheumy told me that if you do get lupus/MS symptoms with anti TNF
they would go away when you stop the treatment? Is this not true
either? (Nervous, as am about to start Humira!)
Stemcell4me.....I'm intrigued! 18 months in total remission? Thats amazing. Would you mind telling me more about the stem cell transplantation? (Sorry if thats too nosy)
LuAnn -
Sweetie, you know you had to be at deaths door to get that transplant. You said so yourself. If we can get a researchers to look into infection and get someplace - how many lives are saved?
You've talked about 'memory' cells that allow the RA to come back in some people? What if research finds it was infection in those cells that caused it to come back to people so bad off?
Tell me why in the big RA bills before congress NOT ONE DIME was earmarkded for research into the infection connection.
Pip
Not that I've seen posted. But I don't know if somebody here was diagnosed with MS and it went away. I don't think so. There was a thread a little bit a ago - you might search for it.
Pip
Pip
Am not in the political arena nor do I care to be but when someone ask's about treatments coming out, What I did and what was accomplished is also an importmant piece of NEWS!!!!
It is not just FOCUS on one thing.
go to www.stemcellresearch.org
Well, no one knows what causes RA, but I don't have to know to see whatYou are right and some of the newer stem cell studies involving rewound stem cells reinjected into the organ and not requiring the bone marrow to be destroyed first is promising to us. And there were funds earmarked toward stem cell research.
All I want is somebody somewhere to seriously look at those lymph cells. The only people so far to do that is Vanderbilt and Trevor Marshall and both are diametrically opposed about the Vitamin D issue.
Pip
Oooooookay.....if there's a cure, I'll take it!LuAnn
Did you read about that poor mans death in the gene therapy trials. It was posted here. Read the link. The US stopped all the gene therapy trials because most of the people are getting cancer probably from the virus used to deliver the adapted genes.
Pip
What disturbs me is I wonder how many of those people in the trials areI don't know about that - I was so bad so fast I was willing to but most wouldn't take me because I hadn't failed on anything yet. The stem cell stuff I read out of England said I had like a 75% chance of surving and I thought that was an acceptable risk.
Pip
Well, that's sort of good to know.....I guess.....I'm so confused!Everyone know the risks when you enter into one of these trials.
I did three months of research on doctors, hospital, ratings etc.
And one thing I can tell you , it would never be my course to go overseas where the patient has no rights.
I chose NW in Chicago because he had been doing it the longest, wrote the book on the procedure and had the best success rate.
I was#7 in the RA group, #8 is presently going through the procedure.
I wish him wellIn all overseas countries in the world the patients have no rights? Really?
Patients only have rights in North America? Is this true?
Me too. Prayers.
No, I'm not saying it right. I'm trying to say I was desperate and severe enough that 1/4 failure rate was OK by me. My hubby was against it. Also, by then I'd found the US was getting into the act and the 'failure rate' dropped to 16% - more acceptable to me and my hubby. And again, I want to know why they count people who die BEFORE the transplant as a failure? They were NOT in the experiment.
Pip
I'm saying if something goes wrong due to malppractice, who will know or care???
I watched two people get stem cell overseases and then sent home and they both died!!!
Oh, that's so sad.How disturbing. I feel sorry for those people. But I think making blanketGoGo,
What I am trying to say is people from the USA flock to other countries because it's cheaper, more accessable, etc. All the while it is being performed in the USA.
When you go overseas there tends to be more risk involved as in follow up etc. Yes you could die there or here but I pick the place with the BEST success rate. I did not make a blanket statement other than say " I would not go..."
The mother that so so desparate to help her 10 year old could have gotten procedure here instead Germany. She did'nt know they did it here:(
Okay...thanks for the explaination. I guess I just thought you meant youStemcell4me -
What was the criteria they evaluated you by to decided that you were a candidiate for stem cell? I have mild RA now, been off MTX for five weeks and doing great, but I know it is a matter of time before I have to take it again. I woul love to know that I don't ever have to take another immune-suppressor again ( or at least for a very extended amount of time). Would try stem cell in a minute and not think twice. To me it seems like it is the only logical cure.
Severe RA with 33 - 38 active joints. (On Death's Door)
But seriously I wonder why thy don't do healthier people but then again the procedure is rough rough rough.
Good to hear you are doing so well!!!!!!
i suspect as of right now the risk benefit ratio is tilted way too far to the risk for people with RA that can be controlled by other means