Re: about Gamma Globulin

[Guest guest]

I have been taking 40 grams of GG IVIG every 7 days for a long time. I

started off at a lower does & worked up to it. I have been doing it for over 15

yrs

now & plan to as long as I can or need to.

Only thing I am worried about is my veins holding up being stuck so often.

**************************************

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[Guest guest]

I'm so sorry ... I got caught up in details and forgot the question...Is there a

limit as to how long I can take the GG? I'm stretching it out now from every

other week to once a month. Just wondering if I can take it indefinitely

Diane in MI about Gamma Globulin

Does anyone know...does GG have a limit? What I mean is...I can tell after I

have taken my GG shot that in a couple days my energy level, brain function,

general sense of well being improves. THis time, I had a terrible sore throat

for 3 days prior to taking the shot. I was hoping it would help diminish

whatever was causing it. It did not. I have since been told by my family dr. it

is post nasal drip. It causes so much pain that I am using Motrin to give

comfort. That causes me concern. I have resumed use of flonase (a steroid nasal

spray) for lack of anything better at the moment. As soon as I find xylitol

nasal spray I'll d/c flonase. Thinking post nasal drip is associated w/

undiagnosed allergies/ chronic sinusitis.

I am also on zithromax, and apparently it's doing something as I've also

medicated myself for increased aching and head ache since starting it yesterday.

I hate to be such a whimp, having to mask symptoms, but I have " stuff " going on

that requires my attention, energy and participation. At some point I know a

crash may happen and I'll be out of commission again, but so far, I'm into the

added stress going on 3 weeks and still functioning at a good 80 - 90 % of

normal.

I have in the last month added SAMe to my list of supplements. That finished

off the minor residual aching I seemed to have daily. I have tender points,

where touching them elicits slight aching, but , it doesn't hinder activity.

Activity intolerance is minimal at this point. I rest often, but am not hindered

in the length of time I am up and moving, doing things as I was 6 months ago.

I have to agree w/ a, my brain function was the first thing to clear. I

think I've been sick, gradual onset, for 5 years or more. Not near as long as so

many of you. Long enough for me to become nearly a vegetable.

Diane in MI

[Guest guest]

Cbuf1920@... wrote:

> I have been taking 40 grams of GG IVIG every 7 days for a long time...

> Only thing I am worried about is my veins holding up being stuck so often.

>

>

When I was first diagnosed in the early 1980's (back when they were

calling this Chronic EBV), my doctor was giving me weekly B12 and GG

shots. These always were into the butt (intramuscular), not into a

vein. I imagine that 40 grams would be hard to take that way, though!

If your veins start giving you problems, one thing to consider is to

have a central line installed. This is what kidney dialysis patients

and those on extended chemo often have. It may strike you as a little

drastic (after all, it is minor surgery), but forever after you won't

need to inject a vein, just inject into the central line.

--

el (andreafrankel at sbcglobal dot net)

" wake now! Discover that YOU are the song that the morning brings... "

[Guest guest]

So I guess long term isn't an issue.

I'm feeling so much better right now, nearly back to normal. I'm wondering

though it that 's the effect of the GG. I may not take the last shot I

have...to see what happens without it. I go back to the Dr. in August.

Thanks for the info.

Diane in MI

Re: about Gamma Globulin

I have been taking 40 grams of GG IVIG every 7 days for a long time. I

started off at a lower does & worked up to it. I have been doing it for over

15 yrs

now & plan to as long as I can or need to.

Only thing I am worried about is my veins holding up being stuck so often.

**************************************

See what's free at MailScanner has detected a possible fraud attempt from

" www.aol.com. " claiming to be http://www.aol.com.

[Guest guest]

You are getting IM shots? What else are you doing?

GG doesn't last but while it works (about 3 weeks) it really helps. I

get small amounts of IVIG (2.5 grams). I like the product (it's in

glylcine).

>

> So I guess long term isn't an issue.

>

> I'm feeling so much better right now, nearly back to normal. I'm

wondering though it that 's the effect of the GG. I may not take the

last shot I have...to see what happens without it. I go back to the

Dr. in August.

> Thanks for the info.

> Diane in MI

>

> Re: about Gamma Globulin

>

>

> I have been taking 40 grams of GG IVIG every 7 days for a long

time. I

> started off at a lower does & worked up to it. I have been doing

it for over 15 yrs

> now & plan to as long as I can or need to.

> Only thing I am worried about is my veins holding up being stuck

so often.

>

> **************************************

> See what's free at MailScanner has detected a possible fraud

attempt from " www.aol.com. " claiming to be http://www.aol.com.

>

>

[Guest guest]

Hi Jill,

IM GG most definitely helped me for longer than 3 weeks. Earlier in my disease

(early 90s) I got it twice a week for many years, usually with a B-12 shot at

same time..

The first year or 2, 4 hours after the shots, I'd feel normal for about 4

hours....very striking.

Those were *some* of the years I did not get colds or flu. When I lost GG

because my insurance no longer paid for it, I had a definite deterioration

overall. I never had the normal feeling again, and also I then got colds and

flu, very virulent now.

I never stopped B-12.

There are other factors at play I'm sure in the phases of the disease, more

stress and responsibilities, etc.

But I'm positive I got worse at that time from losing the GG.

I felt worse, became weaker, and Neurological sx worsened.

I also had 2 CFS friends who had dramatic remissions from IVGG.

One needed to get back on it after 6 months, another has remained quite healthy,

with some cognitive and fatigue sx that linger.

You once said you don't have ME/CFS, or don't think you do. Maybe that's the

difference?

Katrina

> >

> > So I guess long term isn't an issue.

> >

> > I'm feeling so much better right now, nearly back to normal. I'm

> wondering though it that 's the effect of the GG. I may not take the

> last shot I have...to see what happens without it. I go back to the

> Dr. in August.

> > Thanks for the info.

> > Diane in MI

> >

> > Re: about Gamma Globulin

> >

> >

> > I have been taking 40 grams of GG IVIG every 7 days for a long

> time. I

> > started off at a lower does & worked up to it. I have been doing

> it for over 15 yrs

> > now & plan to as long as I can or need to.

> > Only thing I am worried about is my veins holding up being stuck

> so often.

> >

> > **************************************

> > See what's free at MailScanner has detected a possible fraud

> attempt from " www.aol.com. " claiming to be http://www.aol.com.

> >

> >