>Sonia Vohnout <vohnout at wormhole.mmsi.com> wrote:
>>Is anyone in this newsgroup familiar or has this immunodeficiency?
>>>I live on antibiotics and GammaGuard Infussions. It is not a fun
>>life.
>>Does anyone out there have similar problems or has suggestions to
>>help me improve my current health condition?
Sonia, Richard
I have hypogammaglobulinemia and there are some important issues to
be addressed to live a more normal life with this disease.
Most importantly is the recieving of adequate IVIG and antibiotics.
I did not see improvement until I was recieving infusions bi-weekly and at a
dose of 15 grams each.
Many physicians are not aware that the half-life of immuglobulin and IgG
levels do not correlate with immune functioning. In the US most infusions are
done every 4 weeks, the "lucky ones" 3 weeks. In the UK where the primary
immune deficiencies (in adults) are more common, studied and well
understood...my dose is par with what most patients receive.
Add to that the insurance problems for this expensive treatment.
Some insurance companies require a total IgG level of 300......
My total IgG was over 600, yet I had recurrent infection, sinus damage,
bronchectis etc. It was found I had high Ig1 (IgG and IgA can be broken in
subclasses) but no IgG4, little IgG2 and borderline IgG3. My IgA is low normal
and my T-cells are low normal.
So one needs an immunologist/physician to not only look at levels.
CVID or HGG, is a disease of speciality.
I feel a "drop off" (more fatigue, cough etc) at day 12 post infusion.
Half-life of IVIG 24+ days means nothing to my immune system or anyone elses.
The level starts decending day 6 (I believe) and if the trough is too low
(you aren't getting a high enough dose...or frequency, or both), you will
continue to get infections and the replacent therapy will not have a chance
to "boost" your system. If you are not getting enough you will actually feel
worse then better....which may be what you are going thru now.
Secondly, CVID/HGG patients need stronger antibiotics and for a longer
duration. Biaxen, Zithromax can be particularly effective.
Immune deficient patients are particular prone to mycoplasms which many
antibiotics won't reach.
Good therapy with cephalasporans such as Ceftin can be helpful with infections
such as sinusitis especially.
A good example of sinusitis treatment is The Diagnosis and management of
sinusitis from the BMJ, volume 309 , Nov 26 1994.
This undertreated problem in myself caused much morbidity and complication.
I didn't improve until I stayed on Ceftin a full month.
I am now off nebulizer (use an inhaler occasionlly) and steriod sprays and not
needing surgery on sinuses, fevers stopped etc.
If one does not feel better after these measures, there are some secondary
illnesses and disorders common in CVID. The colon (Giardia etc.) and
malabsorbtion problems are common, some autoimmune diseases and even CMV and
other herpes virus activation.
I can't say that I am running marathons now with this therapy or that I even
feel good. I have superimposed Lyme Disease on top of the deficiency.
I can say that before the IVIG, I was bedridden and am not now and would
probably have semi-normal health if it wasn't for the later.
By the way there is a good newsletter for CVID patients and physicians that
comes from the U.K. I handle the U.S. subscriptions...which are free.
I am hoping as health allows to create a U.S. chapter for adults with
hypogammaglobulinemia. If you are interested in being on the list, email me
at the address below. I am also glad to discuss any issuses of the illness.
-Donna
______________________________________________________________
Donna Herrell Lyme Information Resource
<dporter at solar.sky.net> http://www.sky.net/~dporter/lyme1.html
<DHERRELL at aol.com>