dporter at solar.sky.net
Thu Sep 7 14:00:42 EST 1995
pug at arlut.utexas.edu (Richard P. Bainter) wrote:
>Donna Herrell <dporter at sky.net> wrote:
>>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 don't know if I agree with this. I think that once you are stable, you
>will be fine, as I am, but after being stable, I live wonderfully with
>regular maintance of IVIG.
I think maybe the point was missed. If you are stable and do not have
recurring infections, obviously you don't need antibiotics.
Those that do not get proper antibiotic treatment when necessary,
have higher incidence of morbidity, sinus and lung problems/damages etc.
>I did not see improvment until I received 25 grams every 6 weeks and was
>able to get rid of the large section of infection (my lung) via surgery.
>I do drag when I get to the 5 week mark though. This amount was found by
>a European formula using your body weight to compute. (I don't know it
6 weeks is not very frequent but if you are doing well that is what matters.
On the higher end the formula (by weight) is 200-400mg IVIG per kg. of body weight
per month preferably in divided doses or at least every 3 weeks.
This is not a European formula but rather in the PDR, the NIH Consensus Statement May
of 93 and various other publications.
>>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.
>When I looked into alternatives to IVIG, I read lots of European studies
>and what not. I unfortunately found that what I was getting was my best
The reference to the UK that I have made is mainstream medicine.
It is concurrently published information in respected peer reviewed journals
in both countries. I will post some abstracts. I think maybe it was misinterpreted
that I was talking about alternative treatment.
>>Add to that the insurance problems for this expensive treatment.
>>Some insurance companies require a total IgG level of 300......
>Gosh, I'd like levels that high. *smile*
Again, levels do not correlate with functioning of the individual.
>>I can't say that I am running marathons now with this therapy or that I even
>I can say that I feel good. When I get enough excercise in the summers,
>swimming and what not, I feel even better! Definately not much running
>with the lung condition. (Although I have 80% functionality.)
You left out the part that I wasn't feeling good because of Lyme disease,
so gives a different slant to my message. Which is that patients with
hypogammaglobulinemia whom are not seeing improvement are often under treated
with IVIG, antibiotics or both.
I am curious if you lost part of your lung from being under treated.
I was 2 steps away from sinus surgery and severe lung complications till
I boosted both by IVIG and antibiotics.
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