Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Arthritis / April 2005

Tip: Looking for answers? Try searching our database.

Low IGG - I found info!  Get this!

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
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.

Signature

  _('>
 (_<_)

    _
  _('< -quack
 (_<_)

    _
 __('< *QUACK!*
<_{__)

  _('< "|,,|_"
 (_<_)

  _('< "AFLAC!"
 (_<_)

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?

Signature

  _('>
 (_<_)

    _
  _('< -quack
 (_<_)

    _
 __('< *QUACK!*
<_{__)

  _('< "|,,|_"
 (_<_)

  _('< "AFLAC!"
 (_<_)

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.
 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2009 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.