I have a question for the infection theory advocates that's been bothering me. I'm curious if there's been an explanation proposed for they symmetrical pain associated with RA flares. It is very dramatic for me...pretty much every time I have a flare, if it starts on one side (right hand, foot, shoulder, etc.) and it migrates to the other side (left hand, foot, shoulder, etc.). It just seems strange to me that if the immune system is responding normally to a "hidden" infection that the source of the infection would reveal itself in such a symmetrical fashion...you would think the flares would be located very randomly. It seems to me that the way RA flares express themselves in this symmetrical fashion must be a clue to the underlying cause.
Alan
Alan, there's an explaination for that in The New Arthritis Breakthrough but IThe blood stream has a pump, the heart. The immune system has no pump, correct? Thanks in advance Cathy
Well, the white blood cells part of the immune system are in the blood beingGimpy: enjoy your time in the tub...no rush!
Cathy: no pump, but there must be something that recognizes where there is an infection and targets the immune response...hmm, if I find some time I'll do a little research.
Alan
Thanks Alan...you might enjoy reading The New Arthritis BreakthroughHere's a thought too, tell me if I'm way off base or not...
It's sort of like what Link said, about the "infection" finding a weakness. Could it be deeper than that even? Cells in your wrists at some base level are idetified AS wrist cells, which will not produce anywhere else in the body. Perhaps there's something about THAT idea/fact that keeps it symetrical, somehow latching onto that marker, and staying solely in the wrists....or ankles...or whatever else.
Am I out in left field here?
Well, considering no one really knows, I'd say we're all out in left field.Alan -
In my case and diagnosis (Palindromic RA) I was not symetrical for 18 months. It's one of the things the rheumy kept saying was 'not typical' about my RA.
For us (PRA), I think the body is a little better than most in trying to isolate the infection. There is research out there that says the pain levels with PRA is the body's attempt to isolate the joint and why we may not necessarily get joint damage. (Of course, they didn't say it was an infection LOL).
My theory on this is rather...odd. Please bear with me as I try to articulate what I think happens. And, of course, I can't 'prove' any of this, its just what I think happens.
Many people have mycoplasmic, viral, or parasitic infections and manage to do just fine. They don't go on to get an AI disease. Maybe they get treated for something else (pneumonia???) or manage to somehow bring the body back in line with diet or some of the other methods that work just as the body was about to succumb to illness.
The established theory is that we are somehow 'allergic' to the toxins these critters put out. I'm not sure I agree with that. I would think that if we were allergic, we'd show this way back in infancy rather than so late in life. But I'm not going to argue with better brains than I.
I think it takes a lot for most of us to get ill. Yes, I agree that there is some sort of genetic component but I think the entire environmental situation is more important.
Ok, here's the weird part.
I think these critters evolved a lot more than anybody is willing to give them credit for. I think they exhibit some sort of 'hive mind' for want of some sort of sci-fi term. What if when we're first becoming ill and we're under pressure or stress, we're not eating right so we don't have nutritional 'back-up, we're depleting our mineral and vitamin reserves and a few of the buggers are able to infiltrate the white blood cells because we're so run down etc? Those first few baddies would then make a run for the nearest 'weak gene'. Almost like they know where to take out the enemy.
I think in most people it's usually something like the pancreas (diabetes) or the thyroid. I was surprised how many people had first one disease and then went on to develop the others like RA. JSNM uses the term "canary" and I think she's 'right on'. Think about it, without the body functioning correctly either hormonally or with glucose levels (which influence hormone levels) the little buggers can start breeding like rabbits. Now they're more able to 'attack' another system. Like the joints. Or the nerves in MS.
I'm also not convinced that this starts symetrically in more people than not. That's not what I've picked up in posts. I think the actual process is probably 50/50 on the symetrical nature. Granted, by the time a person is diagnosed it has probably moved on to symetrical but did it start that way?
For the people that are symetrical, I'd guess there was a weak gene that somehow allowed that to happen, just faster than what happened to Link.
Sorry if this is babbling - typing out loud here.
Pip
I was symetrical from day one, and only have one disease. I swear there's so much more to this than we have any idea about. Over and over again, people like Joonie and I just DON'T fit the mold. We fit that old traditional mold. Which is probably what makes it harder for new theories to come through. Since they seem to have us so pegged, they think they have it down. KWIM?
Katie - not left field - that makes a hell of a lot of sense. That ties in to the post about how RA peeps have all this discarded DNA in their bodies just floating around. I think that's how the buggers hitchhike. :-)
Alan - I'm pretty sure it was JSNM who posted this weird page on the difference between the innate and the _________ autoimmune systems here - and I can't find it. She even tried to help me and searched too. It was a good explanation.
Feeling lucky?
Pip
Well, I'm not sure I buy the "hive mind" explanation but I really enjoyed reading it. I kept thinking of the Borg from Star Trek...."you will be assimilated"
It is true though that, biology run amuck, has accomplished some pretty strange things!
Alan
Katie - kids don't have fully developed immune systems for quite a long time. Like 7 - 8. They're walking petrie dishes in pre-school. LOL I know, I have one.
And their hormones come online slowly too. I wish I knew more about that...because I know that's somehow involved.
Pip
I don't feel lucky today...my left wrist is killing me and I can't practice my orchestra pieces.
Alan
Sorry you're not feeling well!
LOL - my hubby is constantly making Borg comments about this.
Pip
Just thought I'd let you know....LOL
So what would be the idea for the automatic symetrical features that I had? I mean, I'd only been on the earth for a whooping 18 months! And maybe there's something about the ages that us kids had our worst flares, because I notice A LOT that it's around the same age. 4-6 is TERRIBLE for almost all of us, and then again around 9-13. Hormones, Pip? Oh, and then we get it again in our early to mid 20s. I see a pattern!
And the 'after birth' onslaught that most women report. Or the pregnancy remissions.
God, I wish I could prove this.
Pip
Katie
you and Joonie are very typical of adults with lifelong JRA. Even though there are many many similarities between JRA nad RA there are differences
Irregardless new theory or old theory they all must accomadate the physical manisfestations of the diesase one of which is the symmetricality of RA (the stat is something lik 95% so can't be ignored)
Alan started this "wierd" thread, not me. LOL
If it takes an average of 9 years to diagnosis, why would a person not believe the symptoms had been coming on all along.
Because of my previous in-utero DES exposure, this has been a long journey, and I have been moving towards this disease since puberty.
So, the immune system needs lots of filtered water. Water makes the immune system to detox.
JSNM~~Cathy
I have seropositive RA but have asymetrical involvement. I have doubted forLori - have you checked out www.Palindromic.org? Then you'd be my sister-in-pain?!?!?!
Buckeye - I'm not saying I'm right...I'm saying that's the impression I get when people post. Easy way to find out...LOL
:-)
Pip
And all I'm saying is "irregardless" is not a word---it's crazy talk, that's what it is!http://dictionary.reference.com/browse/irregardless
Hugs,
Pip
ooooooookay...but I feel compelled to point out that 3 of the 4 entries classify it as a "nonstandard" word and the fourth one defines it as "an erroneous word that, etymologically, means the exact opposite of what it is used to express"...so it's still crazy talk! You have to give me at least that. But we're all crazy here.......so it would be standard....... Irregardless, I just can't wrap my head around it. It's the use of nonstandard words like that that have made me crazy.How do you feel about the word 'moot'? That one drives me crazy!
Pip
It sounds like a duck call....
BTW - could we possibly be any more side tracked??
Alan
Heaven forbid anyone inadvertantly use anything less than proper English...I didn't realize that I was writing for a bunch of grammar teachers. But, if you drove you crazy Gimpy my night was complete (lol)
Pip, you know that you can't draw conclustions from what you read on forums. The several hundred people who post regularly on bulletin boards are not exactly a proper sample of the 2.1 million people with RA.
It's really not hard to drive Gimpy crazy......Again. I don't think I would have ever questioned this except for my diagnosis. I was looking for PRA people everywhere. LOL
I guess I just trust you guys a lot more than most 'research'. Maybe they say symmetrical because that's how it ends up - but not necessarily how it starts.
Maybe?
Pip
[QUOTE=Pip!]Lori - have you checked out www.Palindromic.org">www.Palindromic.org? Then you'd be my sister-
in-pain?!?!?!
Buckeye - I'm not saying I'm right...I'm saying that's the impression I get
when people post. Easy way to find out...LOL
:-)
Pip
[/QUOTE]PA is usually Psoratic altho I've noticed they are starting to use PsA more. PRA is Palindromic but most people on the IPRS prefer PR which I confuse with something else AI but can't remember what it is.
:-)
Pip
But no where does it say that RA STARTS symmetrically just that it ends up thereI flunked English. My head started to hurt while reading this thread. Great thoughts, alot to go ponder.LOL Cathy!
See, that's my point. I think it's almost like the "Borg" are taking over more systems. Think of bacteria in a pietri dish. At first it's just a 'contaminant' - then it's the petrie dish.
Pip
Resistance is futile?[QUOTE=justsaynoemore]I flunked English. My head started to hurt while reading this thread. Great thoughts, alot to go ponder. [/QUOTE]
Oh, yeah, I took my first shot of Humira yesterday! Fingers crossed that it works...on second thought, OWWW! uncross those fingers ya knothead!!
Hi Bewildered!
Welcome! Go start a new thread and introduce yourself! A lot of people don't look under the 'infection' posts and may miss you. Here's hoping Humira works for you!
GoGo -
I'm not so sure I buy into allergies anymore. Why would they come and go? To me that says something you did quickly brought your body back online so you were able to deal with the 'allergen'. Let's think about the people that get off antibiotics or remit their RA with diet. They are constantly being exposed to the same microbes. Why are they not effected? See where I'm going with this? I don't think it's an allergy per see, I think it's more of an 'overdose'.
Pip
Edited to remove my name twice!
That is what i feel like today. I science experiment gone bad. A full petri dish. I concur. I am unusual of course and always have been i just now know why. Not why, but what.
I have a theory. Is it possible that in a few large swollen joints it is more contained and less diffuse. Have you checked the amount of internal damage with the different joint presentations.
I dunno if that would hold true milly..........I'm pretty sure there are a lot of people with some TERRIBLY affected fingers and hands, which are probably much more damaged than knees or hips, etc etc. Maybe I'm misunderstanding what you're saying....I'm not sure.I was talking about internal organs. Not joint damage.OH I GET IT! So you're saying like.....how much internal organ involvement is there with people who present RA in different sets of joints?? Am I still off base?
If I've got it now, what do you think the connection would be?
I have RA and scleroderma. The crest cycle. As well as the joint envolvment. My crest cycle was advancing over years, It was not a one day thing but a many many year thing. Wondering about kidney and lung damage ect as relationship to how joints present.From my understanding (I may be wrong) internal organ involvement is very rare.....maybe I'm wrong....It is rare. What is the word we use at docs office. Interesting. It is very interesting. It is horrible. But none the less interesting. All i can say is i could sit here and deny crest if it was lacking part of it. How can i denie this when i have each and every bit of it. The doctors are not argueing with me. They are in shock as am i. I have had a very rare esophogus problem diagnoesed 14 years ago i have to get it checked every four years as some day i will have to have surgery last check two years ago. My esophogus is turning into stomache lining have squamas cells and growths and non cancerous skin changes in my esophogus. If i had one thing to hang onto that suggested i did not have this my life would be wonderful. I am not paraniod. This is happening to me and i want to cry. I will be alright but i am going to cry. All the things i did not have that kept my mind at ease and gave me hope. I just got this week I am trying to adjust or except or whatever. But i simply have all of it. It's not like i can do anything about it. Just go with the flow i guess.Milly -
I'm so sorry about what you are going thru. I wish Pat were here! Have you used nitrobid paste for the SD?
Pip
Milly - I share your fears. I am told I have RA, lupus, sceleroderma, and much more. I think the reason I have such small outside the skin involvement is because of the havoc being done on the inside. It's a creepy feeling this stuff crawling around in you. I am doing better with the minocin antibiotics in me, at least I don't feel as sick as I was feeling. The first upward tick for me in say 7 years, long before the doctors found me "interesting". Hang in there Milly, we are all pulling for you~~CathyThanks just trying to get my head around this. Exceptance time i guess. Just stages i have to go threw. Thanks for being here for me so i don't have to go it alone.