RE: Gamma Globulin

[Guest guest]

Dear :

I am new to this game. I have seen people being put on gamma gobulin. I will try

to ask my doctor on my next visit why he uses it next time I go because I am

curious too. I just found out I have EBV and that could be the problem for all

my tireness. I am now on cynocobalamin, but it hasn't seem to help much very

much. I think I have been on it about a month. Perhaps it takes a while.I am

also short of breath, but in the past year I have gained about 100 pounds. I

just read in Osler's read (an excellent read) that it can happen. I was happy to

know that. I let you know wany thing I find out and hope you feel better. Teena

Re: Re: gamma globulin

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]

Wowhad no idea it was so expensive. I did IM IgG for a year or two and it

helped a lot at a much lower cost. I did two shots a week, and it was about

$50-$100 a month depending on the market (IgG prices fluctuate like the

commodities market, high when there are hurricanes and people need to be

vaccinated for hepatitis....)

Thanks,

Doris

[Guest guest]

Hi All,

I used to get gamma globulin from my pharmacy for $32

for,

I think 10 cc's. That comes out to be $3.20 per shot. That was a number

of years ago. It then went up to maybe, $40 per cc, which seems

very high. The $6000 fee for I.V gamma globulin also seems way

high. I have heard that the price goes up during wartime.

My illness knocked out all my savings.

Mike

[Guest guest]

I've only had one dose (my first, my second is next week) of IgG. My doc

is a very well trained immunologist but is not as up on ME/CFS as I or he

would like. But several people on this list were very informative and

supportive (back channel), which helped me and even him a lot.

I forget now how much he gives me, but the drip takes about 2 hrs because

slow I was told and he agrees is a greater guarantee of no discomfort

from it (any foreign protein can cause an allergic reaction--some take

Benadryl so since I can't he gives me some small amount of IV steroid).

BUT, it is covered totally by Medicare. At oncde a month. If we feel I

do better more often, we have to find out if Medicare would cover it so.

However, he said it was $600 for the medicine/the gg. I don't know yet

what he charges for his services. So $6000 sounds out of hand to me.

Terrible.

Not everyone does well from it this doc says but he feels given some

tests and my history there is enuf reason to try. This is a man I

trust--he's not the kind of human being in it for the money, thank

goodness.

Judith Wisdom

On Wed, 30 Oct 2002 09:49:21 -0500 " Bartowski "

<dab0721@...> writes:

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

it (mainly because I was suiffering 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.

[Guest guest]

IVIG means you get gamma globulin intravenously. I received 35 grams a month.

Big difference between shots and IV treatments.

Re: Re: gamma globulin

Wowhad no idea it was so expensive. I did IM IgG for a year or two and it

helped a lot at a much lower cost. I did two shots a week, and it was about

$50-$100 a month depending on the market (IgG prices fluctuate like the

commodities market, high when there are hurricanes and people need to be

vaccinated for hepatitis....)

Thanks,

Doris

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

I know. My point was that for people considering it, the shots work also so

they are worth giving a try. Maybe they don't work as good but many people

can't afford anything close to what you paid.

Thanks,

Doris

----- Original Message -----

From: " Bartowski " <dab0721@...>

> IVIG means you get gamma globulin intravenously. I received 35 grams a

month. Big difference between shots and IV treatments.

[Guest guest]

About IvIG pricing, my daughter is pregnant with a Kell antigen baby (like Rh)

and has had to take IvIG for about 25 weeks. She was saying thank goodness for

insurance, the cost of the product

alone was $3500.

BTW, they are now doing inutero transfusions and in a couple of weeks, God

willing, I will have my second grandchild, a girl named .

I do not know the amount, but the drip for her was 8 hrs.

Beck

Judith F Wisdom wrote:

> I've only had one dose (my first, my second is next week) of IgG. My doc

> is a very well trained immunologist but is not as up on ME/CFS as I or he

> would like. But several people on this list were very informative and

> supportive (back channel), which helped me and even him a lot.

>

> I forget now how much he gives me, but the drip takes about 2 hrs because

> slow I was told and he agrees is a greater guarantee of no discomfort

> from it (any foreign protein can cause an allergic reaction--some take

> Benadryl so since I can't he gives me some small amount of IV steroid).

>

> BUT, it is covered totally by Medicare. At oncde a month. If we feel I

> do better more often, we have to find out if Medicare would cover it so.

> However, he said it was $600 for the medicine/the gg. I don't know yet

> what he charges for his services. So $6000 sounds out of hand to me.

> Terrible.

>

> Not everyone does well from it this doc says but he feels given some

> tests and my history there is enuf reason to try. This is a man I

> trust--he's not the kind of human being in it for the money, thank

> goodness.

>

> Judith Wisdom

>

> On Wed, 30 Oct 2002 09:49:21 -0500 " Bartowski "

> <dab0721@...> writes:

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

> it (mainly because I was suiffering 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.

>

>

>

>

[Guest guest]

We have been using IMGG for about a year now - one shot every three weeks.

Dr G and the other professionals in CA that we see about once a year, have

all (unprompted) seen the biggest improvements in our son in the last year

compared with the previous 2.

It some how has provided a great immune boost, so - we continue!

Unfortunately they hurt more than Kutapressin - bigger needle, bigger dose,

more viscous solution. We have our local GP do these.

Its worth at trial.

gamma globulin

dr g is considering starting these shots for my 4 year old. i wonder

if parents would be kind enough to share their experiences. thank you

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

thank you for the info. may I ask in what ways has it helped most?

thank you

> We have been using IMGG for about a year now - one shot every three

>weeks.Dr G and the other professionals in CA that we see about once a

>year, have all (unprompted) seen the biggest improvements in our son in the

>last year compared with the previous 2.

>It some how has provided a great immune boost, so - we continue!

>Unfortunately they hurt more than Kutapressin - bigger needle,

>bigger dose, more viscous solution. We have our local GP do these.

>

> Its worth at trial.

>

>

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

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

[Guest guest]

Focus, attention and responsiveness - generally more with us more often!

Re: gamma globulin

thank you for the info. may I ask in what ways has it helped most?

thank you

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

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

I had Blue Cross and while they paid almost every charge I have ever

submitted, they adamantly denied coverage of Gamma Globulin on the grounds

that it is a " blood products " and blood products are not covered.

Over the 2 years I took it, it varied greatly in price. Sometimes you

couldn't get it at any price. In fact when I started out I couldn't get it,

and asked every person I knew for a contact, and finally found someone who

knew the head pharmacist at the local Longs and she was able to get it for

me by special request. The problem was that the Blue Cross has to stock up

on X number of bottles for hurricane seasons (it is used to treat

hepatitis). So there were times that it was impossible to get, although I

knew it was probably expiring on a shelf somewhere. As I recall, it would

vary from $8 per shot (2ml) to $15 or $20 per shot. I did shots twice a

week.

As far as quality, Bayer is the only company making it I believe. There may

be one more.

Thanks,

Doris

Gamma Globulin

> Hello,

> I'm interested in starting Gamma Globulin and I'm hoping my doctor will

> persue it. If anybody who has used it in the past or is currently using

it,

> I would appreciate the following feedback:

> 1. How can you get your insurance to cover it? I have BCBS and it's a

pretty

> good plan, so far they said I need a procedure code for them to see if

it's

> covered.

>

> 2. If insurance does not cover what is the approx price?

>

> 3. Where is the best place to get it from? Quality and price wise?

[Guest guest]

I often found it difficult to find GG. During hurricane season is the worst.

The Red Cross has to keep a certain amount stockpiled for heptatis outbreaks and

they happen mostly during hurricane season. Actually, when I got started I

couldn't find it at all. Every pharmacy said they couldn't get any. I kept

asking everyone I knew if they knew somebody who worked in the pharmacy or drug

business, and finally found someone that knew the head pharmacist at the local

Long's Drug, and she was able to get it for me. Once I was " on the list " I was

usually able to get it except it got very expensive at times, such as during

hurricane season. But it worked. I had EBV pretty bad and the GG helped all my

symptoms, but the first thing it did was stop the sinus infections. I took 1

shot twice a week for a year and a half or two years.

Now my sinuses are fine if I take antibiotics all the time (and the irrigation

and grapefruit seed extract help) and I question whether all the sinus problems

weren't caused by chlamydia pneumonia or some other bacteria.

Thanks,

Doris

----- Original Message -----

From: Sydney Christian

Please tell me more about your experience with Gamma Globulin? My ppc

suggested I try Gamma Globulin injections and Kutapressin to try and modulate my

immune system and therefore get my sinus problems under control. He wrote

prescriptions for both but, I have been unable to find them locally.

[Guest guest]

FWIW, I was given a GG prescription by Dr. Salvato in 1993 or 94,

just when we were invading Grenada or someplace like that. Dr.

Salvato's letter to my local doc even said that it may take some

time to find GG (IM) due to whatever military action was transpiring

at the time. Well, the pharmacy at the hospital where my local doc's

office is had it. So maybe hospital pharmacies are a place to look.

Mike C.

> I often found it difficult to find GG. During hurricane season is

the worst. The Red Cross has to keep a certain amount stockpiled for

heptatis outbreaks and they happen mostly during hurricane season.

Actually, when I got started I couldn't find it at all<snip<<<<

[Guest guest]

Sydney, although I am not Doris, I believe IM GG helped me a lot.

I started on it about one year after sudden onset CFS. I think

you can find it if you look around enough. As far as safety, you

will have to make up your own mind about that. There is a risk

to everything.

Mike C.

> Doris,

>

> Please tell me more about your experience with Gamma Globulin? My

ppc suggested I try Gamma Globulin injections and Kutapressin to try

and modulate my immune system and therefore get my sinus problems

under control. He wrote prescriptions for both but, I have been

unable to find them locally.

>

> Thanks,

> Sydney

[Guest guest]

Has anyone in the US who has been prescribed gamma globulin for IM

use, had it covered by Medicare. My IV gg was but the doc won't

continue it for fear he won't be reimbursed if I'm not back to work!

He says he couldn't get it covered IM because the only dx they'll

cover re IM is for hepatitis. I'm desperate to get some; he can; but

won't prescribe it even though my immune picture warrants it and the

last treatment really helped me.

Judith Wisdom

Does anyone know the cost of IM? How much is used? Much more is

used IV and it was thousands per treatment.

Thanks.

> > Doris,

> >

> > Please tell me more about your experience with Gamma Globulin? My

> ppc suggested I try Gamma Globulin injections and Kutapressin to

try

> and modulate my immune system and therefore get my sinus problems

> under control. He wrote prescriptions for both but, I have been

> unable to find them locally.

> >

> > Thanks,

> > Sydney

[Guest guest]

My doctor gives me 2cc IM of Gamma Globulin twice a week and it is covered

by MediCal, tho I do recall that taking a while to go through. I think it is

under Immune Abnormality (using all words in CFIDS). But I also recall from

lists a test to check immunoglobulins, and if low, would qualify for coverage.

Ask local pharmicists...mine definitely knew or found out that it could be

covered. I think my doctor thought the Hep only thing too.(Hospital pharmicist

might know about IV unless they are only versed on in-patient).

Gamma Globulin ran out for patients except maybe Hep. during Gulf

War...hoping it won't again.

Katrina

> Has anyone in the US who has been prescribed gamma globulin for IM

> use, had it covered by Medicare. My IV gg was but the doc won't

> continue it for fear he won't be reimbursed if I'm not back to work!

>

> He says he couldn't get it covered IM because the only dx they'll

> cover re IM is for hepatitis. I'm desperate to get some; he can; but

> won't prescribe it even though my immune picture warrants it and the

> last treatment really helped me.

>

> Judith Wisdom

>

> Does anyone know the cost of IM? How much is used? Much more is

> used IV and it was thousands per treatment.

>

> Thanks.

[Guest guest]

I was on it about 4 weeks. Maybe it is why I am still working

(barely), but I don't know. As I recall, the GG helped my overall

functioning, nothing specific-just like it boosted my immune system

to be more effective against whatever virus/bug/etc. this DD is.

The EBV titers are a dead end road IMO. I had elevated titers

initially, but no doc ever re-checked. I just don't think EBV has

anything to do with CFS except that the immune system allows EBV

to be slightly activated.

Mike C.

> Mike,

>

> Thanks for the info. I will try checking the hospital pharmacy.

> If you don't mind me asking, how long did you take GG and how did

it help you?

> From the looks of the viral screen I had done at Immunsciences it

appears that my Epstein-Barr is reactivated.

> IgG Epstein-Barr VCA 650 <100 ELISA

>

> Sydney

>

>

>

[Guest guest]

Katrina,

Thanks. CalMed does cover it. But I need evidence that Medicare

(Federal US not state) does and cannot find out from Medicare. They

did for 3 treatments IV. Doc says they won't continue to if I'm not

back at work! And he says no they won't cover IM for nonHepatitis.

I wish someone seeing one of the docs in the US who has had it

covered by Medicare might know but apparently not.

I feel so lousy and that helped, showed signs of helping. I'm about

to give up if my doc won't call the docs who'd know.

I'm very weary and very broke. And am having to go into non-pursue

mode for a while I guess.

Judith Wisdom

> > Has anyone in the US who has been prescribed gamma globulin for

IM

> > use, had it covered by Medicare. My IV gg was but the doc won't

> > continue it for fear he won't be reimbursed if I'm not back to

work!

> >

> > He says he couldn't get it covered IM because the only dx they'll

> > cover re IM is for hepatitis. I'm desperate to get some; he can;

but

> > won't prescribe it even though my immune picture warrants it and

the

> > last treatment really helped me.

> >

> > Judith Wisdom

> >

> > Does anyone know the cost of IM? How much is used? Much more is

> > used IV and it was thousands per treatment.

> >

> > Thanks.

[Guest guest]

Katrina,

Thanks. CalMed does cover it. But I need evidence that Medicare

(Federal US not state) does and cannot find out from Medicare. They

did for 3 treatments IV. Doc says they won't continue to if I'm not

back at work! And he says no they won't cover IM for nonHepatitis.

I wish someone seeing one of the docs in the US who has had it

covered by Medicare might know but apparently not.

I feel so lousy and that helped, showed signs of helping. I'm about

to give up if my doc won't call the docs who'd know.

I'm very weary and very broke. And am having to go into non-pursue

mode for a while I guess.

Judith Wisdom

> > Has anyone in the US who has been prescribed gamma globulin for

IM

> > use, had it covered by Medicare. My IV gg was but the doc won't

> > continue it for fear he won't be reimbursed if I'm not back to

work!

> >

> > He says he couldn't get it covered IM because the only dx they'll

> > cover re IM is for hepatitis. I'm desperate to get some; he can;

but

> > won't prescribe it even though my immune picture warrants it and

the

> > last treatment really helped me.

> >

> > Judith Wisdom

> >

> > Does anyone know the cost of IM? How much is used? Much more is

> > used IV and it was thousands per treatment.

> >

> > Thanks.

[Guest guest]

Hi Everyone,

Wondering if anyone has had the reaction to Gamma Globulin s I am now having.

Have had 3 colds which resulted in 2 sinus infections and one severe ear

infection. I had a Dr. write me a prescription of Immune Globulin. It

arrived a day after I had ordered it, came in ice. One other thing I have

taken IG before several time but this time am having a terrible reaction to

it. Took one 2cc ampoule as soon as I got it and within an hour I started

sneezing, sinuses filling up, terrible headache. Two days later am still

feeling worse than usual and brain not working as well as usual. Called the

Pharmacy and they said that sometime people have mild flu symptoms and you

should premeditate with Tylenol and antihistamine. I am having more than a

little reaction, like I could hardly sleep at all last night because of the

pain.

This is what is written on the brochure that came with the medicine: IG is

made from human plasma and carries the possibility for transmission of

blood-borne viral agents, viruses, and theoretically, the Creutzfedt-Jakob

disease. I knew of these possibilities but seeing it written again and

especially since I'm feeling so badly. Has any one else had similar

reactions? Wonder if my Immune system is so much worse off than when I took

it before, like too much of a good thing. Have two more ampoules but will

have to get over the present sinus infection before I will take any more.

Thanks,

H.

[Guest guest]

Hi ,

I would not worry if I were you. If you already had a cold or flu virus the

GG just helps your Immune system fight it off so it makes the symptoms worse

at first.

It does help over all though. Though I know some people will not take it

when they have a cold or flu for that reason.

[Guest guest]

Hi . If you are having an immediate bad reaction to the GG, it

would seem to me *highly* unlikely that you caught a virus or

CJD in that there is a period of days to weeks after exposure before

you start showing symptoms. My understanding is that the screening

process for blood donors for GG has gotten a lot better, so it is

very unlikely (but not impossible) that there is anything at all

wrong with it. What about trying a smaller dose than 2cc? Since

GG has immune boosting cells in it, you may initially have adverse

reactions, and everyone is different, obviously. I can't imagine

that GG would make your sinus infection worse, it should help you

get over it sooner, but Rich or another list braniac (take that as

a compliment) might know more. Personally, I received GG within the

first year of sudden onset 'CFS', and I think that it may be

responsible for the fact that I am still able to work (to let you

know where I am coming from).

Mike C.

In , helenw8262@a... wrote:

> Hi Everyone,

>>>snip<<<<

> Wondering if anyone has had the reaction to Gamma Globulin s I am

now having.

> Have had 3 colds which resulted in 2 sinus infections and one

severe ear

> infection. This is what is written on the brochure that came with

the medicine: IG is

> made from human plasma and carries the possibility for transmission

of

> blood-borne viral agents, viruses, and theoretically, the

Creutzfedt-Jakob

> disease. I knew of these possibilities but seeing it written again

and

> especially since I'm feeling so badly. Has any one else had similar

> reactions? Wonder if my Immune system is so much worse off than

when I took

> it before, like too much of a good thing. Have two more ampoules

but will

> have to get over the present sinus infection before I will take any

more.

>

> Thanks,

>

> H.

[Guest guest]

I want to comment on gamma globulin because this is very important!!!

First of all, GG is someone elses blood which is fractionated (parts of their

blood is separated) and it can be dangerous. Without starting a huge debate

about this... our local blood drives do NOT screen for things i.e. babesiosis

(which I have and once you have it you cannot donate blood.... how many people

know that... how many DON " T know they have babesiosis????) Of course, AIDS is

a concern, so is lyme, etc.

WHY NOT look to the natural alternative??? That would be Goatein Powder or

whey protein. Almost all gamma globulins are immunoglobulins. " Immuno " stands

for immune and " globulin " stands for protein. these make antibodies which are

the soldiers that fight off foreigners or infections in the body.

There are different types.... IgE, i.e., is if someone was allergic to

something, their IgE would be elevated.

IgA is if someone had an infection in a mucosal lining.....mouth, intestine,

mucus lining of the stomach.

You all have heard of IgM (lyme) which is representative of early disease,

acute illness.

IgG (lyme test again, Western blot) is late disease.

If your low on any of these, you are in trouble.

What can you do?? Garden of Life (you can inquire wherever you want to find

this product but I will tell you I DO sell it) is well known to have GOATEIN,

which is whey protein. NOT ALL WHEY PROTEINS CONTAIN THESE IMMUGLOBULINS.

This is just a natural way of acquiring natural gamma globulins!!!

sue massie, CNHP

sue in nj

Nature's Garden of Health

732 933-4011

[Guest guest]

I have been on gamma globulin for ten years. I have no fear.I tried to go off

for about six months; but the I went right back to severe fatigue.

Carole

[Guest guest]

Hi all, karen,

There is a small risk of getting cj( cannot spell it out )

brain disease via the gamma globulin but i have taken it over the years as i

feel

for me the benfit outway the risks.. I use it as an immune modulator and a

few times when my detox reactions got out of control an extra dose helped and

once when i danced for less than a minute and raised my temperature over 100 f

and had to lower it to a safer level..the gamma did that.

I have been on 2 cc gamma globulin once a week for years , it has prevented

respiratory infections for me in the winter and i am hoping it has decreased

my highly allergic reactions.

I have to be careful not to take excess amounts as i tend to get elevated

gammagloubulinia levels..

good luck , it maybe a bit hard to find as alot is used for our troops

around the world.

somish