I just got my blood tests back (although not that darn anti-ccp), and I am high for Parvovirus B19, which is Fifth's Disease in little kids. Since I have a child, it would make sense that I've been exposed to it.
On emedicine.com, the arthritis resulting from the virus is described as follows: "Symmetric postinfectious arthritis may develop, affecting the small joints of the hands and feet. The knees and elbows are rarely involved. Arthritis is much more common in adults, particularly in women, than in children. Arthritis may persist for weeks to months or (in a small number of patients) years. The arthritis may mimic rheumatoid arthritis (RA)..."
Since the knees are not involved--and mine most definitely ARE--I wonder if this virus is the type of thing that could cause reactive arthritis... is that the same thing as "post-infectious arthritis?" And does reactive arthritis turn into RA?
I thought that several of you have mentioned that you had infections or illnesses prior to your RA diagnosis, so I'm just wondering about possible link.
Christina, my brain is too foggy right now to pick up all of that, but I'm one of the people who believe my auto-immune conditions were triggered by infections (fibro by repeated strep and RA by burst appendix). It's interesting to me because I had Fifth's as a child, and while I've had spine problems all along, my other auto-immune conditions didn't seem to come until long after that.
I'll try to make sense of all this another day. Thanks for posting it.
Suzanne, thanks for responding--I'm sorry you are having a fuzzy day. I have not been able to concentrate, either. I just returned my son to school this morning after having him home for 2 days sick (although he was fine yesterday!) only to have the pediatrician call to announce that his strep test turned up positive this morning. One hour after dropping him off, he met me at the door of his school beaming in excitement. So much for my productive day off...
Anyway, back to the topic, I see that you are seronegative for RA. If you don't mind that I ask, have you had definite joint degeneration show up in x-rays and such, or were you diagnosed by the joint pain and swelling alone? The more I read, the more I see that it can cause seronegative arthritis in women for years afterwards... in 20% of them, which isn't anything to sneeze at when you consider that's one out of five people.
It makes me wonder if parvovirus B-19 is a standard test in blood panels; perhaps more seronegative people who are waiting on a diagnosis for RA might have arthritis resulting from something like this?
And other sources mentioned that it can show up in the knees, wrists, hands, and feet.
This is OT, but when is your birthday? I'll be 38 in Feb.
I tested positive for Parvo. And my daughter may have had it or Fifths (is that the 'slapping' disease with the bright red cheeks?)
And, like Lyme, if you leave it alone long enough it will definately be RA.
There is a girl who posted on the Roadback, Jennhere, that had Parvo and was treating it with AP. She got better last I heard. She had PRA too.
AP does NOT work on viruses altho ancedotal evidence says we get less viral infections than most people so I think it somehow helps but not in the way docs/researcers say.
Because of the viral links to the onset of these diseases I have been convinced that I need to do a course of antivirals at some point in my healing. Just got to figure out how I convince a doc to do THAT. LOL
Christina, there is nothing to fill up your day like a child who is home from school! Unfortunately my day is all fuzzed up with pain.
My diagnosis, as I remember, was based on my nuclear bone scan which showed symmetrical activity in all the typical spots. They did follow up with x-rays, but for the life of me right now, I can't remember if they saw something specific, or if they even told me! It's so hard to be a good patient and self-advocate all the time.
Maybe, if I can remember, I'll ask my rheumy to add the parvo test to my bloodwork next time. BTW, sorry if this is a stupid question, but if it is reactive arthritis, what is the treatment for that? AP? Gosh I wished my brain worked today.
Gotta run cause my hubby's here to take me home now. B-day was end of July, so you're just a little bit ahead of me.
I'm not sure but I think the treatment for reactive arthritis is something in the pennicillan family for something like 2 years.
Don't quote me.
Suzanne, as I read more, I realize I'm not fully understanding reactive arthritis. I'll let you know once I do! You know, this medical research would be fascinating if I weren't actually living it, LOL.
Pip, yes, Fifth's is the slapped-cheek disease. It's really common, and many people have no reaction to it. In little kids, it can present as the rosy, lacy cheek rash and flu-like symptoms, but in adults, it might cause a facial rash (similar to the rash in lupus) and/or joint pain with arthritis lasting for weeks, months, or even years.
The thing I don't understand is how long the parvovirus "positive" shows up in your blood work. I had mononucleosis in 12th grade, and as a result, it always shows up as a positive in blood work. I wonder if parvovirus is like that?
In other words, if since I tested positive, does this mean that I could have had it back in July and that's what is causing the resultant arthralgia? Or does it just mean I coincidentally had it last week when I was tested (I'm a teacher) and it's just in addition to the possible RA?
I have an Ask a Nurse magnet on my fridge from the local hospital. Would it be too much for someone to put out an Ask an Infectious Disease Specialist magnet?
Oh Pip, thanks for the Reactive Arthritis info; we must have been posting simultaneously.
Okay, so you tested positive for parvo... what did the RD say to do about it? I cna't remember, do you definitely have degenerative joint damage? Because some of what I'm reading is saying that the arthralgia--that can last possibly for several years after having the virus--which is caused by parvo can be non-damaging to joints. It just sort of jived with the palindromic (sp?) symptoms you've been telling us about.
Oh, and my anti-ccp was on there and is negative, so if I have RA, I guess that means I'm going to be seronegative.
My regular rheumy didn't test - my AP doc did - but he seemed to think that wasn't it. Just like - you've been exposed to Parvo in the past.
I wish Karin was here - she understands titres. I am under the impression the titre shows how long ago you were infected.
I was negative CCP until I started AP. Then I went positive for a bit (2.9) and am back to being negative. My RF is still sky high tho.
I also think I pushed myself into RA because of my misusing the Aleve for pain control. Palindromic RA is often confused with Bursitus or tendonitis or Tennis Elbow. I can't explain it well - but it feels differently than RA. Just these 'attacks' out of the blue. Between attacks you feel nothing - I mean, nada, not a twinge, not feverish, not 'lurkers' etc. If a PRA person goes into remission - we're talking real non-medicine-induced-remission - they feel normal in every way. We give ourselves a lot of 'it was in my head stuff' to go along with the doctors. LOL
But I can still feel something now. I know my disease has reversed itself in a lot of ways. I was back to single joints when I herxed on AP. I really don't even herx anymore. It's just like I feel something and I think that might be the RA part. Does this make sense? Kind of 'off'.
I'm taking more X-rays on the 26th but my first set showed no damage - even tho I had one toe that was twisted to the right on my left foot. It has been moving back to being where it's supposed to be so I have hopes that as I get the last of the inflammation down the darn toe will stay where it's supposed to.
Isn't that silly - worried about a toe?
And yes - oddly, I can read 'science' for fun now. Can't remember my last Bodice Ripper but can remember strange glucose studies or odd thyroid reports. Fascinating stuff!
I worry about toes.. But I really get hysterical about thumbs.Marian, I will give you my thumbs and Pip my toe if someone will please trade me some knees! I had scarlet fever at age 3, which can lead to rheumatism. Plus its a form of strep. But I know this all really took off when I hit a man in a wheelchair with a breakaway door with no window inside a stairwell at work - totally illegal configuration. Herniated my C7 disc and then it was off to the races. But you all are scaring me here with this thread, impressive discussion and great new information. I've had strep throat more times than I can count. I missed 1/3 of my 5th grade year due to repeated strep and ear infections (still got 99% on the achievement tests though!!). About a week before I came down with the arthritis, I caught some sort of minor cold/flu bug (not strep). I missed a couple of days of work, thought I was all better, then BAM! I couldn't put my feet on the floor or hold a book in my hands.
Id bet you'd test postitive for strep. Dr. Brown says the big bads (strep, pneumonia and I can NEVER remember the 3rd) are things we all had a lot as children.
Christina - I couldn't walk down stairs by myself? Does that count? Now I can run up them even tho I'm fat and really shouldn't because it's soooo ugly. LOL So, you're new to all this...probably no damage yet!
Cathy - don't freak! The mino is attacking the critters; it doesn't have a lot of time to attack your joints now. At least thats what I kept telling myself.
PipI had strep throat a bunch of times as a kid. It took me a long time to make
No c pneumonia is chlamydia pneumonia. That's the one I didn't test positive for but I'm sure I have - just sure one of the buggers didn't swim in the tube. That's mostly the lung one. Linked to heart disease too. It's not the STD tho - a cousin.
GoGo - we could start a website:
OK, now that I'm pumped full o'pred
If I'm all caught up, what we're saying here is that some viruses can cause a resulting arthritis that mimics RA, but may require a different treatment, such as penicillin for 2 years. Is that right?
And how do they distinguish between that possibility and the RA? Mine seems to be in my knees and elbows as well (which I think Christina said she read in another place), but then again, that could be osteo arthritis or even nerve pain (especially the elbows) based on my RA, fibro, or DDD.
I guess what I'm getting out of this is that this is one more possibility out there, but we really don't know enough yet to make use of this information?
Tell me if I've got it right, or if I'm close, or if I'm way off base...
As far as I can tell with my research, reactive arthritis is a form of arthritis that was, back in the day, brought on by sex. So, they treated it with pennicillan for a long time and ...look at that...it went away! Somehow they put 2 + 2 together and said 'whoa' this is an infection'. I tried to get an reactive arthritis diagnosis but I didn't qualify - probably because I tested negative for syphillus. :-)
My thoughts at the time, coupled with that abscessed tooth, kept me going back to the 'infection'. I mean, because of my brother and my husband they sent me to an infectious disease doc but I didn't test positive for anything. Even Lyme. Which was a distinct possibility.
I have always questioned the fact that if they know one version is an infection - yet how can all the others only be 'your body is mysteriously attacking itself'.
Then I found out about Lyme RA and thought - another infection.
Then I found out about the Parvo virus and some of the other viruses and went....whoa!
Seriously - I once saw a case study about a 19 year old that presented with severe early onset RA and was treated with antivirals. I think it was Belgium. And he walked out of the hospital cured. I'd kill to find that again and every once in a while I try to find it via Google - but no luck. If I could find that then I'd have something to wave under a docs nose so I could do a course of antivirals.
Then I found that research that said Type 1 and Type 2 diabetes are a lot more similar than they thought and just then went...it's all an infection. All of it. Lupus, Scleroderma. Diabetes.
I think the genetic component is in the hyperpermeable gut lining.
But I'm no doc...just trying to get rid of this beast.
P.S. I think most nerve pain (except MS) is inflammation pushing on the nerves. The neuro told me that's the most common pain for us. As for osteo - they are linking it to infection but it's not a myco I think. Something I read said the culprit is smaller. Since at that time I didn't know I had the beginnings of DDD I didn't copy that.
Well, penicillamine is listed on all the sites as a DMARDS, but it isn't an antibiotic. This is as close to an antibiotic I can find that is given any stature by the medical community, except now AP/minocin since 1997 when the ACR approved it.
I think its all dogma. The only thing that really moved this along was the H Pylori thing.
All I can go on is what happened to me. Abscessed tooth (among other things) = PRA. It's just weird/fortuitous that I focused on that because of how it all came down. Because that might have been the straw that broke the camel's back but what it really was was stuff from childhood. Who's ever going to put that together?
PipLinccn, if they have a reason they're not sharing it! 'Cause Lord knows I've
Ok...major brain fog going on here....but are you saying that the fact that I had strep (so many times as a kid I can't count them) could have something to do with me having RA now?
I was sent to a University hospital when I was 12-13 yrs old because they thought I might have JRA, but they never diagnosed me with it....also never did any blood work?? But I had problems with my ankles then and have had problems with my wrists BADLY since childhood.
I'm also a Strep B carrier--wonder if that's in the same "strep" family? My oldest daughter contracted it from me when she born. I was treated w/ antibiotics during labor with my other 3 children....
This is a very interesting thread--wish my brain fog would move out so I could understand what I'm reading!
GoGo - you made my night. In 2004 I was returning to Florida and my seat mate was a Reservist going for training in Atlanta, and would be heading out to Afghanistan or Iraq, I cannot remember now where exactly. He was a Emergency Services Medic in real life, and he mostly studied a thick text book during the flight. At one point I glanced over and the pages he was studying were human outlines with red pain centers over different parts of the body. The one I spotted first was EXACTLY the pain I have that burns through to my upper right back under the shoulder and across my upper back. I was so surprised, I said what are you studying? He said that if you have a patient with this pain, if means they have __________. There were about let's say half a dozen different diagrams. So I pointed to the one that matched the pain symptoms I had initially gone to urgent care for in 2002 and had a zillion tests for and nothing was found to be wrong. He looked it up, and yep, here it is: it was for H. plyori. I, of course, arrived home, went back to the same doctors, got tested, and it was negative, so once again I was informed I was crazy, caging for narcotics by making up my pain, needed to see a psychiatrist, and was depressed. You have made my day, and my hubby says thanks too.
Amylynn - I think that's what this thread is about, that possibly your strep caused your RA. We are just conjecturing here, but there seems to be a strong correlation here with strep, sinusistis, rheumatic/autoimmune. Pretty mindblowing, eh?
That's exactly what Dr. Brown said. I too had strep too many times to count as a kid. I used to pray that they'd take my tonsils out but they never did. I have seen articles recently that says when they eventually removed the tonsils some people with RA/AI diseases get a lot better because the tonsils work as a filter for strep bacteria. Eeeeuuuuwww!
This is what keeps me stuck on my 'threshold' hypothesis. I think JustSayNoeMore/Cathy posted a link a while back on the difference between the innate and ________ immune systems. It seems our bodies have the ability to store and remember every infection we ever had so that determines what microbe we get sick from. Like if the cold is going around and we had it - the body goes- nope - here's immunity to it. I keep thinking that if the body got overwhelmed by stress and an infection and poor diet and whatever...how do we reduce the problem so the body can fight back again?
They have tests for H. Pylori. Just ask your doc to run it. My question is will the test be good because you're on Mino? If you're on Mino for myco tests they make you get off for 6 weeks.
H. Pylori is the active myco in heart disease plaque. My question - how did it get out of the GI tract? It has to be 'leaky gut'?
PipI've always been told that when the tonsils are removed, you have a tendency to get more lower-respiratory tract infections (bronchitis/pneumonia). That's why they never took out my tonsils when I was a kid. I don't know how true it is; it makes sense, but on the other hand if the tonsils keep sheltering the strep bacteria, then taking them out would make better sense. Who knows.
Yeah, but in my case, if you get one, you get the other. I tested negative for c. pneumonia....then had walking pneumonia AGAIN. I've got to be a walking bacteria factory.
PipNo problem, JustSayNoeMore, anytime! I just think it's freaky because I'm
Do a search here for "diabetes and capsaicin" which I have a disturbing pattern of typing as capsaisin occasionally. Tell me what you think. I going to cure diabetes in my hubby while I'm at it.
LOL - got to think big!