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Medical Forum / Diseases and Disorders / Sinusitis / March 2005

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IVIG for specific antibody deficiency

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uuperiwinkle@yahoo.com - 18 Feb 2005 00:00 GMT
Hi,

I've been lurking for awhile but haven't posted.  I would love to hear
from someone who has been treated with IVIG for chronic sinusitis.  I
have had my first treatment, went off Avelox about two weeks later, and
am now waiting with great anxiety to see what happens.  I haven't been
able to get off antibiotics for more than a few days in about six
months. I have another treatment scheduled next week.

Just so you know, I'm doing all the other regular stuff- irrigating
with both saline & sporonox, allergy shots, Singulair & Allegra, daily
oral fluconazole, nasal steroids, etc.    Thanks.
pellmellwillynilly@hotmail.com - 19 Feb 2005 21:51 GMT
Hi.

I have not been treated with IV IgG but have low levels and am in the
process of being tested to see if I'm producing antibodies to
vaccinations, such as tetanus and pneumonia. Since last May, I've had
myriad sinus infections, at least two serious bouts of bronchitis and
two rounds of pneumonia. I see online that IV IgG is the treatment of
"choice" for people with low IgG levels, but I note that it is often
not successful. I hope you will report on your experience with it.

BTW, do you know which of your IgG subgroup levels are low, and how low
your overal IgG is? My overall level isn't much below normal, but
something sure is wreaking havoc on my immune system.

Pell

> Hi,
>
[quoted text clipped - 8 lines]
> with both saline & sporonox, allergy shots, Singulair & Allegra, daily
> oral fluconazole, nasal steroids, etc.    Thanks.
uuperiwinkle@yahoo.com - 20 Feb 2005 03:16 GMT
My overall IgG is fine; I think that only four out of twelve subclasses
were measured, and three of the four were low (IgG 3 was very low).  My
MD told me that the tests that measure IgG subclasses are not that
great, and that the "acid test" is the response to vaccinations.   I
produced antibodies to tetanus, but the response to pneumovax was weak
enough that my insurance co. approved a four month trial of IVIg. I am
very hopeful that it will help, as not much else has.  I had no side
effects from the first infusion, although I was very tired the next
day.  I really don't notice much of a difference, but I will say that I
have now been off antibiotics for five days and have not gone downhill,
which is a record given my experience over the last six months.  LJ

> Hi.
>
[quoted text clipped - 28 lines]
> daily
> > oral fluconazole, nasal steroids, etc.    Thanks.
Steven L. - 20 Feb 2005 03:59 GMT
> My overall IgG is fine; I think that only four out of twelve subclasses
> were measured, and three of the four were low (IgG 3 was very low).  My
> MD told me that the tests that measure IgG subclasses are not that
> great, and that the "acid test" is the response to vaccinations.   I
> produced antibodies to tetanus, but the response to pneumovax was weak
> enough that my insurance co. approved a four month trial of IVIg.

My immunologist had a different testing protocol:  Instead of tetanus,
she specially ordered a special vaccine called PRP.  PRP consists of
killed Hemophilus influenzae bacteria (that's a common cause of sinus
infections).  She ordered that because my initial count of H. influenzae
antibodies was so low.  Given how many times I've had sinus infections,
I should have had more antibodies to that thing.  But I reacted well to
the PRP so she decided I didn't have an antibody deficiency.

If you're having repeated infections indicating an immune deficiency,
you ought to be tested for HIV if there's any chance at all you might
have become infected.

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

uuperiwinkle@yahoo.com - 20 Feb 2005 15:38 GMT
Thanks- I've been tested for HIV.  IgG subclass deficeiency is
considered a primary immune deficiency; I've discovered that there are
quite a few of them- most of which I don't have, thank God.

> > My overall IgG is fine; I think that only four out of twelve subclasses
> > were measured, and three of the four were low (IgG 3 was very low).
My
> > MD told me that the tests that measure IgG subclasses are not that
> > great, and that the "acid test" is the response to vaccinations.   I
[quoted text clipped - 4 lines]
> she specially ordered a special vaccine called PRP.  PRP consists of
> killed Hemophilus influenzae bacteria (that's a common cause of sinus

> infections).  She ordered that because my initial count of H. influenzae
> antibodies was so low.  Given how many times I've had sinus infections,
> I should have had more antibodies to that thing.  But I reacted well to
> the PRP so she decided I didn't have an antibody deficiency.
>
> If you're having repeated infections indicating an immune deficiency,

> you ought to be tested for HIV if there's any chance at all you might

> have become infected.
>
[quoted text clipped - 3 lines]
>
> Remove the NOSPAM before replying to me.
Murray Grossan - 22 Feb 2005 03:50 GMT
On 2/20/05 7:38 AM, in article
1108913892.231238.178520@g14g2000cwa.googlegroups.com,

> she specially ordered a special vaccine called PRP.  PRP consists of
>> killed Hemophilus influenzae bacteria (that's a common cause of sinus
>
>> infections)
Please ask your doctor where she gets this vaccine PRP and to please let me
know.
Once upon a time there were dozens of these available and I haven't been
able to lacate any recently. Thanks.
Murray Grossan, M.D.
Steven L. - 23 Feb 2005 01:01 GMT
> On 2/20/05 7:38 AM, in article
> 1108913892.231238.178520@g14g2000cwa.googlegroups.com,
[quoted text clipped - 10 lines]
> able to lacate any recently. Thanks.
> Murray Grossan, M.D.

Why don't you contact her directly.  Her name is Dr. Maria Castells at
the Allergy Department of Brigham and Women's Hospital, Chestnut Hill
Massachusetts, 617-278-0300

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

uuperiwinkle@yahoo.com - 04 Mar 2005 22:07 GMT
Dear Pell,

Have you heard yet about your response to vaccinations?  I'm happy to
report that after two months of IVIg, I have been able to get off
antibiotics (and stay well) for the first time since August.  Actually,
I discontinued the antibiotics two weeks after the first treatment.
Still have chronic sinusitis, but no infection.  I have had no side
effects from the treatments, although I did feel a bit woozy for about
30 minutes after the second treatment.  Hope you are feeling better.

> Hi.
>
[quoted text clipped - 28 lines]
> daily
> > oral fluconazole, nasal steroids, etc.    Thanks.
pellmellwillynilly@hotmail.com - 05 Mar 2005 04:29 GMT
Thanks for asking!

I'll probably hear Monday about whether I seem to have made antibodies
to the tetanus shot I got in August. I don't know how much the data
will tell the doctor, since we didn't have a before-shot measurement of
my tetanus antibody levels, but at least there's data on that.

Unfortunately, I haven't managed to stay well long enough to get the
pneumonia vaccine. Three days after the last bout of bronchitis, I got
another cold. The doctor is trying to prevent that from becoming
another bronchitis by having me inhale two squirts of my "rescue"
inhaler every four hours until the sinus drainage goes away. Between
the inhaler and irrigating 3-4 times a day, the chest infection is
being successfully kept at bay. The sinuses still feel assaulted, but
maybe that will be little enough body problem that I'll be allowed to
get the pneumovax at my appointment Monday.

I'm glad you're successfully off antibiotics. Can you explain how you
can have sinusitis but no infection? I thought the -itis ending meant
infection of whatever is at the beginning of the -itis word. Does it
just mean inflammation and not infection?

> Dear Pell,
>
[quoted text clipped - 40 lines]
> > daily
> > > oral fluconazole, nasal steroids, etc.    Thanks.
uuperiwinkle@yahoo.com - 05 Mar 2005 17:52 GMT
Yeah- inflammation without infection.  I have a lot of allergies,
especially to molds, and get shots as well as medications for that.
Once the sinus membranes have been inflamed for a period of time, they
thicken and become hyper-reactive to just about anything- cold air,
stress, etc. It never really goes away but some days are better than
others, and the measures I take seem to help overall.

> Thanks for asking!
>
[quoted text clipped - 72 lines]
> > > daily
> > > > oral fluconazole, nasal steroids, etc.    Thanks.
pellmellwillynilly@hotmail.com - 08 Mar 2005 05:26 GMT
Hey! I got the pneumonia vaccine today. Looks like I might not have IgG
subclass deficiency, since I'd not only made antibodies to the August
tetanus shot but even had some antibodies to pneumonia before the
vaccine. (So why have I had pneumonia twice in the past year? Ugh.)
Anyway, I guess I'll have results for the pneumonia antibodies in 6
weeks or so.

The rescue inhaler and frequent nasal rinsing kept that cold from
getting into my chest. Oh, I used hot rice packs to break up the sinus
congestion too. I'm gonna remember that procedure next time I get a
cold!

> Yeah- inflammation without infection.  I have a lot of allergies,
> especially to molds, and get shots as well as medications for that.
[quoted text clipped - 91 lines]
> > > > daily
> > > > > oral fluconazole, nasal steroids, etc.    Thanks.
 
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