Medical Forum / Diseases and Disorders / Arthritis / April 2005
Low IGG - I found info! Get this!
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DiWitt - 09 Apr 2005 05:44 GMT Oh my gosh! I finally found a few websites that explain what I have and what it's all about.....check this out:
"Some patients with Common Variable Immunodeficiency (CVID) who may not be receiving optimal gamma globulin therapy may also develop a painful inflammation of one or more joints. This condition is called polyarthritis."
It goes on to talk about how the joints usually do not contain bacteria but can show mycoplasma in some instances. It usually involves the larger joints such as knees, ankles elbows and wrists. Well that works for me only add the shoulders and hips....I'd call those large!
Then it goes on to talk about how some people with CVID have a depressed antibody response and low levels of gamma globulin and some of these antibodies may attack their own tissues and become AUTOANTIBODIES! Oh my gosh. I can't believe I am reading this!
http://www.primaryimmune.org/pubs/book_pats/e_ch03.pdf That's the website I'm reading off. My ID didn't tell me I have this but the blood tests are consistent with the dx and his treatment. I'm just totally flabbergasted reading it! I've been finding a lot finally. Most of it is way over my head but it connects my MS and RA symptoms to the CVID. Wow. Why didn't anyone else know this or test me for this before? Maybe the reason Enbrel causes so many sinus infections is because of a connection to CVID. Wouldn't that be a wild connection. After all....it's called "common" for a reason.
 Signature Cyberhugs, DianeW
It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry
-- Cyberhugs, DianeW
It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry
Adelle - 09 Apr 2005 15:26 GMT > Oh my gosh! I finally found a few websites that explain what I have and > what it's all about.....check this out: [quoted text clipped - 27 lines] > to CVID. Wouldn't that be a wild connection. After all....it's called > "common" for a reason. Diane,
Hi! The supposed presence of mycoplasma is the support/basis for ABX therapy for RA. It is considered somewhat controversial, which is why no one ever said it before. It is not a 'mainstream' idea.
Does the article specifically say "CAN show mycoplasma in SOME instances?" That's very amorphous language. "DOES show mycoplasma in some instances," is more concrete and definitive. I wonder if this article is proffering something that is a theory, but the researcher doesn't have proof, yet.
I searched out similar articles when ABX helped me so much. There is that definite overlap in symptoms between MS, Lyme and RA that makes it hard to tell one from the other and which makes the idea so appealing; life would finally make sense. But the longer I'm on ABX, the less my heart can believe it. Why?
My uncle (a pediatric RD) has been following the research on ABT. So far, while it does show significant results in reducing inflammation, they have not shown to have any efficacy in reducing joint erosion at all. They think that it's the anti-inflammatory properties of the ABX which provides relief, not the anti-microbial properties.
So maybe mycoplasma can be responsible for polyarthritis, but only in people with CVID. Or maybe it's another causation theory that is being worked on and not proven. Who knows?
Adelle
DiWitt - 10 Apr 2005 13:46 GMT Adele -The article uses the word "may" - "mycoplasma may be the cause and be difficult to diagnose." What I'm getting from it is that the lowered immune system is leaving the person open to different types of infections, mycoplasmas etc that might be the cause of different symptoms from polyarthritis to gastrointestional problems. As in all conditions, you cannot blame everything on one problem. I was asking why no one ever tested my level of IG before not tested for mycoplasmas. I do recall reading about them before when I was first dx with RA esp because I've always felt remarkably better on abx. My rheumy told me it was most likely the anti-inflam component of the abx rather than it actually being curing some sort of infection. The reason I'm on IV abx now is because I had a severe sinus infection for 3 months, a bronchial infection and an abscess tooth, all at the same time that hadn't gone away after 5 rounds of different abx. My arthritis and MS were getting worse as I was unable to continue the Enbrel while being treated for the infections. I was sent to an Infectious Disease dr who recognized this type of infection as a sympton of someone with low IGG levels and ran the appropriate blood tests. English is not his primary language so we have somewhat of a stilted communication pattern. But I get the gist of what he is telling me. Plus the nurses are great at answering my questions. I'll have plenty of time to talk with them Monday when I get my first infusion of IVIG -- 4-5 hours! He did tell me that based on my history, I've probably had this since I was a child. I was always sickly, seldom making it thru a whole week of school without missing a day. I remember in third grade missing so many days of school that I was almost not passed onto the next grade. My teacher used to come to my house and tutor me to keep me up with the class. Constant sinus and tonsil infections. I've lost track of how many times I've had pneumonia. And when I was a kid, I remember getting shots of gamma gobblem to boost my immune system, the last one being my freshman year in college. I remember them because they hurt so bad. But that dr died and it was never anything I thought about in all the years after until this ID mentioned it. Too bad. Of course in those days I'm sure they did not have the sophisticated testing available that they do now to break it all down., Kids like me were just "sickly"
It would be nice if all my illness could be wrapped up in one package with one name. My neuro at Mayo Clinic spent the good part of a year trying to do just that. She kept telling me that my symptoms and tests were never 100% on target for either MS or RA and she kept looking for other dx that might explain them together. Tons of blood tests. But never this one except in my spinal fluid. And it was low there I see now when I look back at it. She ended all the blood research with a 99.9 % dx of MS, leaving doubt for that little bit that didn't make sense to her. I wonder what she is going to say about this now?
I'm just going to have to wait and see what happens after I've been on IVIG therapy for a bit. I've been on abx now for 3 weeks and the increase in red and inflamed joints has slacked off. Of course the pain level is hard to tell because of my fall. My MS is still acting up but that is expected because I still have infection. It is definitely going to be interesting to see how this all works out.
 Signature Cyberhugs, DianeW
It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry
> Oh my gosh! I finally found a few websites that explain what I have and > what it's all about.....check this out: [quoted text clipped - 27 lines] > to CVID. Wouldn't that be a wild connection. After all....it's called > "common" for a reason. Diane,
Hi! The supposed presence of mycoplasma is the support/basis for ABX therapy for RA. It is considered somewhat controversial, which is why no one ever said it before. It is not a 'mainstream' idea.
Does the article specifically say "CAN show mycoplasma in SOME instances?" That's very amorphous language. "DOES show mycoplasma in some instances," is more concrete and definitive. I wonder if this article is proffering something that is a theory, but the researcher doesn't have proof, yet.
I searched out similar articles when ABX helped me so much. There is that definite overlap in symptoms between MS, Lyme and RA that makes it hard to tell one from the other and which makes the idea so appealing; life would finally make sense. But the longer I'm on ABX, the less my heart can believe it. Why?
My uncle (a pediatric RD) has been following the research on ABT. So far, while it does show significant results in reducing inflammation, they have not shown to have any efficacy in reducing joint erosion at all. They think that it's the anti-inflammatory properties of the ABX which provides relief, not the anti-microbial properties.
So maybe mycoplasma can be responsible for polyarthritis, but only in people with CVID. Or maybe it's another causation theory that is being worked on and not proven. Who knows?
Adelle
Adelle - 11 Apr 2005 03:56 GMT Diane,
Hope you start feeling better from the fall, soon.
I did follow the whole story. Guess I wasn't clear about what I was saying. Guess I meant to say I hope the infusion of IVIG works for you and that they have found something that really helps. But being the Eeyore type that I normally am, I would take it with a grain of salt that this might just be one factor in an aggregate of things, rather than a magic bullet. I would hate for you to get your hopes up and then find this helps some, but isn't the final word on what is happening.
Adelle
DianeW - 11 Apr 2005 05:46 GMT I know what you mean about not getting my hopes up to high. I keep telling myself that even it the IVIG works and does prove to be my magic bullet, it certainly isn't going to repair the damage that's already done to my joints and nerves from the RA and MS not to mention the osteoperosis. My body has lots of stuff that maybe won't get worse, but won't get better. I'm hoping on just not getting any worse.
DianeW
Duckie - 10 Apr 2005 00:16 GMT Totally over my very tired head but so glad it is making sense to you. It is wonderful when we find info on things that have been bothering us for years. Sort of a ahhhhh. Here is hoping you feel very much better after your infusions. Duckie
> Oh my gosh! I finally found a few websites that explain what I have and > what it's all about.....check this out: [quoted text clipped - 22 lines] > to CVID. Wouldn't that be a wild connection. After all....it's called > "common" for a reason.
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Nann Bell - 10 Apr 2005 15:30 GMT Wow, it sounds like these IGG injections might help a whole lot more than the recent infections. Don't want to hope TOO much, but it would be so wonderful. This low IGG must be something that only a specific group of docs know about so far. I don't know why though, they've been able to test for it for quite a while. Maybe you can learn more over time from the office. Surely would have been nice if someone had thought to check this out earlier.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
DiWitt - 10 Apr 2005 18:54 GMT That's exactly my point. I've been to just about every other kind of specialist including hemotologists and immunologists. Now the immunologist tested me for other IG series but not the IGG. And the three he tested me for were normal in 1990 and still are today. It's only the IGG and all the sub-classes that are low.
Tomorrow is the big day for the infustion. I'm supposed to bring a blanket and pillow as well as lunch. I've also got a good book. Anyone used to infusions got any other advice for me?
 Signature Cyberhugs, DianeW
It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry
Wow, it sounds like these IGG injections might help a whole lot more than the recent infections. Don't want to hope TOO much, but it would be so wonderful. This low IGG must be something that only a specific group of docs know about so far. I don't know why though, they've been able to test for it for quite a while. Maybe you can learn more over time from the office. Surely would have been nice if someone had thought to check this out earlier.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Diane - 10 Apr 2005 21:05 GMT di, i hope this works miracles for you! keep us posted.
here is something i don't understand about the abx. when i was first diagnosed, i went on the antibiotic therapy ( i was positive for mycoplasma). i was followed by dr franco in california, flying across the country to see him. i was very involved with the ABT online group (a wonderful group of folks!). one of the hallmarks of abx treatment was the herxheimer effect, which meant that you got worse before you got better. initially, the abx would make you flare. so when you and others say you feel better on abx, that seems to contradict that.
also, the abx did not work for me, although i know they do for some and there are studies to prove it. i know it takes a long time, but i was on them for 1 1/2 years, all the while incurring a lot of joint damage. i finally gave in and accepted the "big meds" (mtx at the time) my local rd wanted to put me on.
anyhow, i don't think this has much to do with your situation, but just felt a need to share my own experience. let us know how the infusion goes. as far as advice on getting infusions goes, if they give you benadryl, you may have a nice snooze. otherwise, the book is the best way to go.
best wishes,
diane
DiWitt - 10 Apr 2005 21:37 GMT Diane - I'm going on my 4th week of abx now. Since its IV I think that the results may be a bit quicker than it oral. The first week I definitely think I was having the herx effect. Joints that were previously quiet became red and inflamed, not to mention very painful. That lasted abut a 7-10 days and then I went thru what I can only call a cycle. At first it was an every other day kind of thing, then every third day, etc till now it's hard to tell because of my fall. But on those "other" days, the red, inflamed and painful joints would be noticeable again. Then a few days of quiet. The other times I've felt better on abx was when I was either on IV or long term. I was on something called Raxar before it was taken off the market for almost 3 months. I felt really good during that time. But as my rheumy said, I couldn't take them forever. We did try minocin but it did nothing for me and then Enbrel came out.
My joint damage is very slim because I've been on Enbrel for so long. In fact, whenever I've had a joint x-rayed, it looks pretty normal which is amazing considering the amount of pain I have. Never have understood that.
No benedryl tomorrow unless I feel like I need it. They said they've only had one person with an allergic reaction in 10 years. Hope I'm not #2. Going to read the last of my Stephanie Plum novels and then I'm getting back to yours! You are writing faster than I am reading!
 Signature Cyberhugs, DianeW
It is only with the heart that one can see rightly; what is essential is invisible to the eye. --Antoine de Saint Exup?ry
di, i hope this works miracles for you! keep us posted.
here is something i don't understand about the abx. when i was first diagnosed, i went on the antibiotic therapy ( i was positive for mycoplasma). i was followed by dr franco in california, flying across the country to see him. i was very involved with the ABT online group (a wonderful group of folks!). one of the hallmarks of abx treatment was the herxheimer effect, which meant that you got worse before you got better. initially, the abx would make you flare. so when you and others say you feel better on abx, that seems to contradict that.
also, the abx did not work for me, although i know they do for some and there are studies to prove it. i know it takes a long time, but i was on them for 1 1/2 years, all the while incurring a lot of joint damage. i finally gave in and accepted the "big meds" (mtx at the time) my local rd wanted to put me on.
anyhow, i don't think this has much to do with your situation, but just felt a need to share my own experience. let us know how the infusion goes. as far as advice on getting infusions goes, if they give you benadryl, you may have a nice snooze. otherwise, the book is the best way to go.
best wishes,
diane
Newsgroup Spambuster - 11 Apr 2005 00:47 GMT Hi Diane,
Sending lots of prayers and hugs your way. Sure hope this IGG infusion will be most helpful to you and that you will notice an improvement fairly quickly.
I think more doctors are now starting to look at these types of things. I know my lung doctor has mentioned to me about getting my IGG drawn and checked because of the numbers of infections and stuff I get. They are also developing new meds for some conditions such as asthma and such that is specifically for people who test low in the IGG area.
Will await with interest to see how you do and to see if these infusions will work well for you! Keep us posted and glad to hear the sinus stuff is finally starting to clear as well. Really sorry to hear you took another fall!
Donna G
d'huit - 11 Apr 2005 05:44 GMT > Diane - I'm going on my 4th week of abx now. Since its IV I think that > the [quoted text clipped - 25 lines] > back > to yours! You are writing faster than I am reading! all of this is waaaay over my head, but i sure wish painfree days ahead for you, dianew! real bummer about your fall, kid. hope that owie heals up quickly for you.
are you on "Ten Big Ones"? i was given all ten books for my birthday. i'm just beginning "Three to get Deadly" (but, i'm also halfway through reading diane's lovely "Her Mother's Shadow" and a few chapters into a savory latice of a novel called, "ireland" by delaney).
evanovich is a hoot, isn't she?! i think the funniest line i've ever read in my life was from her "Two for the Dough", about stephanie and her grandma masur, "we looked like tales from the crypt does the bopsie twins." it still cracks me up!LOL
kate
Kelly Cobb - 11 Apr 2005 14:51 GMT > all of this is waaaay over my head, but i sure wish painfree days ahead for > you, dianew! real bummer about your fall, kid. hope that owie heals up [quoted text clipped - 11 lines] > > kate I LOVE the Plum novels and have read all of them. I think it was #7 that had its release date scheduled for when I was in Scotland. Lisa and I were walking down a street in Inverness and happened to look in the window of a bookstore. Five minutes later I had my book. One of my best souvenirs of my trip to Scotland was that book!lol
Right now I'm trying my best to get into Anna Karenina...part of my quest to educate myself about some classic writers. Since I didn't to go college I missed out on some great literature somewhere along the way and I'm slowly trying to make up for it.:o) It doesn't hurt that I love to read, anyway.
Kelly C.
DianeW - 11 Apr 2005 23:39 GMT I just love them. Had taken a book on vacation to the beach and it ended up being a faster read than I anticipated. I went to the very small gift shop at the hotel where I was introduced to Stephanie Plum. When the sales clerk told me I would literally be laughing out loud, I didn't know she really meant literally LOL !! That was a good line. There are sooo many that crack me up. I usually don't find a lot of time to read other than in drs offices. Last year was slow.....it took me months to finish #5 but now I've finished 5-10 this year already. Doesn't say much for my health if I'm in the waiting room that often does it? I started with 8 and then went back to the begininng. My sister sent them all to me as she read them.
Have you ever wondered who would play who in a movie? OTP: Actor Dead or Alive ---- I'm going to start a new thread and lets see who we get.
Diane W
Diane - 11 Apr 2005 19:23 GMT <<Going to read the last of my Stephanie Plum novels and then I'm getting back to yours! You are writing faster than I am reading! >>
Janet is a trip, isn't she? i knew her back when she was poor, like the rest of us authors. lol. she deserves all she's received though. she had a brilliant idea and the talent to carry it through.
diane
Duckie - 11 Apr 2005 05:08 GMT Take a crossword puzzle book and some knitting with the book. I always take more than one thing to do just in case I get bored. Easy to read if no one is talkative but the knitting works better when the person next to you wants to chat. Of course with Remicade now they are giving Benedryl so I also sleep. Enjoy the time. Total me time. Duckie
> That's exactly my point. I've been to just about every other kind of > specialist including hemotologists and immunologists. Now the immunologist [quoted text clipped - 5 lines] > and pillow as well as lunch. I've also got a good book. Anyone used to > infusions got any other advice for me?
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DianeW - 11 Apr 2005 05:50 GMT Thanks for the suggestions! I have knitting needles but no yarn! I've only knitted something once and that was 17 years ago! I made a baby afgan for a friend. I had pulled the needles out a few weeks ago thinking I might like to try again but never got around to buying any yarn. Oh well. I love to read. That's going to have to suffice. I think I'll take my cd player too. DianeW
Squirrely - 11 Apr 2005 21:13 GMT Diane W,
I hope this IGG stuff gets straigthened out soon for you and that you heal quickly. I hope the antib's are working for you to help get you better soon.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Oh my gosh! I finally found a few websites that explain what I have and > what it's all about.....check this out: [quoted text clipped - 27 lines] > to CVID. Wouldn't that be a wild connection. After all....it's called > "common" for a reason.
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