RE: Gamma Globulin

[Guest guest]

I have been using Gamma Globulin IV's for about 10 years now & it helps

tremendously.

It helps with the fatigue & infections.

I have a lot more functionalability with it.

I was able to get the State's Medical Insurance to pay for it.

You just need a diagnosis of some Immune dysfunction like Dysgammaglobulin

to qualify for it.

Good Luck

[Guest guest]

,

My 10 year old Daughter (dx autism) uses monthly IM gamma glob injections for

immune booster. Not good for all cases and strongly recommend against

Iv IG.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

In a message dated 3/13/02 11:49:11 AM Central Standard Time,

Cure2000@... writes:

> Not good for all cases and strongly recommend against

>

May I ask your reasons??

Carole

[Guest guest]

In a message dated 3/13/02 12:06:57 PM Central Standard Time,

C3814@... writes:

> > Not good for all cases and strongly recommend against

>

I would very much like to hear your reasons for being so against IV Gamma

Globulin.

Carole

[Guest guest]

In a message dated 3/13/02 8:18:25 PM Central Standard Time,

bwentdg@... writes:

>

> Expense, No proven benefit for CFIDS

>

>

Hoomph, I have been on the IVG for about 10 years at my expense; and a great

benefit to my health . The midwest gerru is my DOC. and I am very greatful .

Carole

[Guest guest]

There was a Double blind study Published in the Journel Of American Medicine

that found very positive results with treating CFIDS with Gamma Globulin IV's

I personally know 10 people who are currently using it with very good

results. If you have a low immune system, It can help tremendously.

I will look up the exact date & info on the article when I get the chance.

[Guest guest]

The " Sydney group " trialled GG, and decided that it was no use for CFS as

Mark says, but I was still getting GG from the same group because it REALLY

helped me.

I think CFS researchers don't keep their eyes open in looking for

sub-groups (different etiologies) when choosing who to test.

This is like choosing a group of people with a limp and doing a trial to

see if putting their leg in plaster will help. It would probably fail as

a " controlled trial " because most limps are due to old injuries, infections

or arthritis etc, but for those who were limping because their leg was

freshly broken it would be a GREAT help. Most CFS trials are bad science I

reckon, leading to stupid conclusions.

n

At 12:42 14/03/02, you wrote:

>In a message dated 3/13/02 12:06:57 PM Central Standard Time,

>C3814@... writes:

>

>

> > > Not good for all cases and strongly recommend against

> >

>

>I would very much like to hear your reasons for being so against IV Gamma

>Globulin.

>

>Carole

>

>

>

[Guest guest]

Expense, No proven benefit for CFIDS

Re: Gamma Globulin

In a message dated 3/13/02 12:06:57 PM Central Standard Time,

C3814@... writes:

> > Not good for all cases and strongly recommend against

>

I would very much like to hear your reasons for being so against IV Gamma

Globulin.

Carole

[Guest guest]

n,

Let me carry this one step further: CFS should be immediately abolished as a

name and as a diagnosis. It is a non-diagnosis for a non-homogenous group of

people.

Nelly

Re: Gamma Globulin

> The " Sydney group " trialled GG, and decided that it was no use for CFS as

> Mark says, but I was still getting GG from the same group because it

REALLY

> helped me.

>

> I think CFS researchers don't keep their eyes open in looking for

> sub-groups (different etiologies) when choosing who to test.

>

> This is like choosing a group of people with a limp and doing a trial to

> see if putting their leg in plaster will help. It would probably fail as

> a " controlled trial " because most limps are due to old injuries,

infections

> or arthritis etc, but for those who were limping because their leg was

> freshly broken it would be a GREAT help. Most CFS trials are bad science

I

> reckon, leading to stupid conclusions.

>

> n

>

>

> At 12:42 14/03/02, you wrote:

> >In a message dated 3/13/02 12:06:57 PM Central Standard Time,

> >C3814@... writes:

> >

> >

> > > > Not good for all cases and strongly recommend against

> > >

> >

> >I would very much like to hear your reasons for being so against IV Gamma

> >Globulin.

> >

> >Carole

> >

> >

> >

[Guest guest]

> n,

> Let me carry this one step further: CFS should be immediately

abolished as a

> name and as a diagnosis. It is a non-diagnosis for a non-homogenous

group of

> people.

> Nelly

>

I agree without reservation.

The CFS conglomerate population produced by the current name and

CDC definition procludes any meaningful research results. It is a

barrier to good science, advances in knowledge, and human rights

of the patients (treatment, disability support, dignity, etc)

IMHO

Best

Jo

[Guest guest]

No argument with this!

It used to be actually a " diagnosis by exclusion " which would have to be

the stupidest approach to " diagnosis " that can be imagined, if you are

trying to actually diagnose. If they called it EOTNDS ( " Everything Other

Than Named Diseases Syndrome " ) instead of CFS, then they would be on the

right track and not be fooling themselves and us.

n

>Let me carry this one step further: CFS should be immediately abolished as a

>name and as a diagnosis. It is a non-diagnosis for a non-homogenous group of

>people.

>Nelly

[Guest guest]

Jo - absolutely! I have a webpage which is a bit of a rant, on exactly

this topic. I don't know why this is not a view shared and acted on by

those doing research.

http://members.austarmetro.com.au/~julian/cfs-politics.htm

I just re-checked this page for relevance and see that it is not terribly

well phrased and bit long-winded, but you can see that I am making the same

point.

n

At 00:05 15/03/02, Jo wrote:

> I agree without reservation.

>

> The CFS conglomerate population produced by the current name and

> CDC definition procludes any meaningful research results. It is a

> barrier to good science, advances in knowledge, and human rights

> of the patients (treatment, disability support, dignity, etc)

> IMHO

[Guest guest]

I think the reason studies have not shown it to be

useful (as happens with many things that are useful to

some people) is it depends on what is causing your

symptoms. When I had EBV, most of my symptoms were

from that, not " CFS " if such a thing exists. Gamma

globulin shots absolutely and without a doubt made me

feel much better.

Doris

__________________________________________________

[Guest guest]

Well I use GG IV and I am having fantastic results.

Carole

[Guest guest]

Hey Mark,

I also have been using GG IV's for about 10 years now.

It has made a an incredible difference in my level of health.

I was bedridden & too weak toeven sit up or talk most of the time. Now I am

able to take care of myself, though I still need to rest a lot.

Yes, it is expensive. If you get blood tests that show a Lowered Immune

system, which many of us have, you can be diagnosed with Dysgammaglobunemia

or a similar Immune dysfunction disease & can probably get Insurance to pay

for it.

I am in California & the State Medical insurance, Medi-Cal is paying for it

for me.

My Dr Ordered it for me & It really helps my immune system so I do not get

infections or complications & it also helps with the Viral flareups & & my

Multiple Chemical Sensitivity & all aorund general health & level of energy

When I went off of it a few years ago for several months, I relapsed again.

I would not give it up for anything in the world

It is the one thing of many I have tried over the last 20 years that has

worked to improve & keep my health much better.

I highly recommend it to anyone with CFIDS to try.

[Guest guest]

How long have you been on it ?

Who ordered it ?

How is it helping ?

Is insurance covering it ?

Is it expensive ?

Re: Gamma Globulin

Well I use GG IV and I am having fantastic results.

Carole

[Guest guest]

> Hey Mark,

> I also have been using GG IV's for about 10 years now.

> It has made a an incredible difference in my level of health.

>...

What about risk of contamination of the GG? I know blood is screened,

but no screening system is perfect. Is this an issue for you?

Jackie

[Guest guest]

Re: screening of Gamma Globulin,

There were some problems quite a few years ago with some contamination.

But they have instigated a much more thorough cleaning of the products.

Also it is not a whole blood product so that makes a big difference. The AIDS

& Hepatitus viruse cannot survive through all the processes it goes through.

Of course there might be something they do not even know about yet that

makes it through, but It would be highly unlikely.

I am extremely cautious about what I put into my body & rarely take any

other Prescription medicine, but I feel that this helps me so much that any

minor risk is well worth it.

[Guest guest]

i am on IV gamma globulin..it is helping me but my appetite is enormous and

of course iam gaining some weight..anyone else with this experience?

[Guest guest]

Oh really!

I mean you are having IV gamma globulin for CFS? If so apart from the enormous

appetite is it making you feel better.

Hugs

Dianne

Re: Re: gamma globulin

i am on IV gamma globulin..it is helping me but my appetite is enormous and

of course iam gaining some weight..anyone else with this experience?

[Guest guest]

I have been on GG for over 10 yrs & I have gained & lost weight but mostly

gained it over the years

I do not think it has much to do with the GG except it is probably making

you feel better so your appetite has increased. Has your ability to exercise

increased also?

I would think that is a good sign.

My weight goes down when I have more energy & can exercise & do not eat as

much to try to give myself energy.

[Guest guest]

yes ..it is making me feel better...barbara

[Guest guest]

PinkPeaceStar wrote:

>i am on IV gamma globulin..it is helping me but my appetite is >enormous and of

course iam gaining some weight..anyone else >with this experience?

I did IVIG (IntraVenousGammaGlobulin) for 1 year at 35 grams

each month. I did not experience any increased appetite problems. The only

thing that ever caused an increase in

appetite, for me, like that was steroid use (Prednisone).

[Guest guest]

Hi All,

I had once taken gamma globulin because I thought it would

be

theoretically good for me since my IGG 1 and IGG 3 were low. I

think that for a time it helped me. Now i'm not sure. I have been taking

the intra muscular shots. I once took a gamma globuling IV and it

was too strong for me and threw my system off for a few weeks.

Mike

[Guest guest]

As far as the benefit from IVIG ... the Doctor who originally put me on it

(mainly because I was suffering with constant sinus infections), told me I would

have to have the IVIG once a month for the rest of my life. I started the IVIG

with him, but didn't like the way he treated his patients, so found a Doctor in

my home town to continue the treatments. During this time I also found an

allergist (in my home town) to see if he could help me with all my allergies.

This allergist looked over the tests that the first Doctor used to determine

that I needed the IVIG. The allergist told me that some of my responses were a

bit low, but he didn't feel they were low enought to put me on IVIG. He told me

that I was getting benefit from them because IVIG has a very strong

anti-inflammatory effect. But at $6,000 a shot, I think I could find a cheaper

way of getting anti inflammation. I did get benefit, but the benefit (at least

in my case) wasn't because of my immune system dysfunction.

I have had two Doctors administer the IVIG to me ... one was in New York City,

and one in my home town of Syracuse, NY. I have always had wonderful Doctors,

even though most weren't knowledgeable to help me with CFIDS. But I always felt

that my Doctors had my best interest at heart. The two who adminitered IVIG I

became to realize were definitely in it for the money. It must be a profitable

business. I would caution anyone who proceeds in this direction, to get a

second opionion and to make sure that they feel comfortable with the Doctor who

is providing this treatment. My experience is that they put their profit margin

above their patients' needs.

This was just my experience with IVIG. I'm sure there are many wonderful

Doctors out there who use IVIG and are honest and not in it for the money.

Unfortunately, that wasn't my experience. I should have got a 2nd opinion, but

I was so desperate, at the time, to get well. The sinus infections were taking

a toll on my whole system. So be careful and if you feel unsure, get another

opinion.