RE: Gamma Globulin

[Guest guest]

,

I think folks have been using gamma globulin for CFS for years, both IM and

IV. I tried it and it made me very sick, but I have heard that other folks

benefit from it. I think that it is well worth trying (as long as you are

not allergic to eggs). I understand that the IV version is very expensive

but if you try the IM version and get a little better then you could try the

IV. If you get sick like I did you will most likely only feel bad for a

couple of days. Going the anti-viral route is something that everyone should

try because if it works great and if it does not then you know to try other

things. I do not think that this approach provide any help with allergies

and may make thing worst. Like me I am sure you have been sick many times

with this DD so what do you have to lose? -- just a couple of days of

day-time TV.

Good Luck

Steve

Gamma Globulin

From: McGill <aw185@...>

Hi, I know this has probably been discussed at length previously, but is

anyone taking Gamma Globulin, or taken it at some point? Effects?

Helped with immune problems or allergies?

Thank you!

-

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[Guest guest]

Hi ....i have been receiving gamma globulin IVs for about seven years. I

have hypogamaglobulinemia as well as CFIDS. The gamma has helped me

tremendously. Now of course there is a shortage.........the goverment has

been stock piling in Europe for several years........now with the Kosovo

crisis..mine has become unavailable. Sometimes one can have problems with

different brands....?????/who knows why. I had a new brand and no problems.

Through eperience know it is best to be given slowly..less apt to have any

after affects! I am one of DR. Brewer,s patients. Email me if you have any

questions. Carole

[Guest guest]

>From: GAILRONDA@...

>

>In a message dated 10/30/99 6:42:38 PM Eastern Daylight Time,

>elsbeth@... writes:

>

><< Is Gamm Globulin

> thought to be " alternative. " What has it done for you >>

>

>beth, Gamma Globulin is a blood derivative that has helped many

patients

>feel a bit better, cut down on their symptoms, and eliminates many

>infections. It's a difficult one to get, however, as it's expensive, in

>short supply,

Hi,

It is not possible to get in MI now according to my RHEUM who used it for

lupus patients. This was something I really wanted to try!! I know it

helps infections.

Rich Carson, the

>owner of the Health Buyer's Club for FM and CFIDS that sells all alternative

>drugs via this company and many more he owns, has been using Gamma Globulin

>for his own case of CFS.

Is he still able to get it??

take care,

Christie

[Guest guest]

Hi Jodi, thanks for your report. I am glad the treatment works for you and

wish you good luck with your work.

Stania

-----Pùvodní zpráva-----

Od: JODI CARLSON <CJCIMAGE@...>

Komu: CFSFMexperimentalonelist <CFSFMexperimentalonelist>

Datum: 6. listopadu 1999 9:51

Pøedmìt: Gamma globulin

>From: CJCIMAGE@... (JODI CARLSON)

>

>In answer to Christie's question about gamma globulin treatment for

>CFIDS, yes, I did get this treatment. Probably have posted before in

>archives about it.

>

>I received monthly infusions for one year. Started at 12 grams, stepped

>to 18 grams, and I think 20 or 24 from there on out. I received these at

>the Center for Special Immunololgy in (then Irvine, now they have moved

>to Fountain Valley). This was done under the direction of Dr. Darryl See

>while he was still treating CFIDS patients, and before Mannatech.

>

>The reason I was given it was after the results of immunological tests

>which indicated I had IGG subclass deficiencies, my immune system was

>suppressed. I was getting a lot of respiratory infections, etc. along

>with the CFIDS symptoms of fatigue, etc.

>

>The first 2 infusions were given quite slowly, over about 4 hours, then

>later stepped up. It took about 2 hours on average.

>

>This did help me. After one year, I elected to stop and see what would

>happen. Even though my bloodwork still shows IGG deficiencies, I am not

>getting sick with respiratory infections now. The antibodies you are

>given only remain active for 3-4 weeks, so I cannot explain why I am not

>getting sick now. I also started a supplement program at the same time,

>so I attribute both treatments to improvement. But I am not one of the

>really sick patients, either. I am holding a job (sometimes better than

>other times). It was difficult because I was reduced from a salaried to

>an hourly worker because of my time off from work, partly because I was

>going for treatment, partly because of relapses, and it took at least

>1/2 day to drive up there, get treatment, and come back, depending on if

>I could get an afternoon appointment. I know this sounds petty to those

>who are unable to work, but it was a blow to my paycheck, and to my

>self-esteem. Now I am considered a very questionable employee. My boss

>lets me come in late, which has also helped my health immensely, but she

>will not let me stay late, which is the time I am actually more alert

>and productive. I know many on this list were probably fired and had a

>lot worse situations, and I grieve for all of us who have such

>difficulty functioning in the " real world " , and whose bosses and

>co-workers care only for the bottom line and find ways to get rid of

>chronically ill employees. Ultimately, I want to find another job, and

>help chronically ill people in some way. But right now, I have medical

>insurance at least.

>

>Dr. Ferre now sees me, and I think some others on this list see her as

>well. There was an interuption in gamma globulin supply after I

>finished, I have heard from other patients. I think the military soaked

>it up for awhile, and at least one manufacturer went out of business.

>

>My first 2 infusions were rough, I almost quit. I don't know if I

>experienced some kind of die off or what, but I am glad I stuck it out.

>

>I know some on this list also get gamma globulin shots, which seem to

>help some, too. The intravenous infusions deliver a lot more antibodies

>into your system. They are from thousands of donors, so you have to

>weigh the risks of getting a blood product- are they screening properly

>and making a safe product? Some patients in Europe got hepatitis from

>improperly screened product some years ago, and several required liver

>transplants. So each person has to decide for themselves whether they

>want to do this if a doctor recommends it.

>

>I think some studies have shown mixed results. Everyone does not

>benefit. But it is one option for those whose insurance will pay, and

>have a suppressed system where infections are a problem.

>

>I am taking some classes at night school, which I hope will lead to

>another job, so I am not able to be as active on this list, but I try

>and read as much of it as I can, and I am thinking of all of you I have

>come to know through this list, and wishing for improvements in

>everyone's health and situations. Hang in there!

>

>Jodi

>

>>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]

It took about 3 months of migraine & other reactions for the Dr to find the

right brand & doasage of Gamma Globulin for me but it was worht it to me.

I feel there is VERY minimal chance of getting something from the blood

products. Definitely not hepatitus or AIDS.

They have instituted more rigorous processing to make it safer recently &

that is one of the reasons they said there was a shortage. They had to to set

up a new manufacturing process & equipment.

But they did use a lot of rthe Military during Kuwait. & I think they are

selling it overseas for more profit.

Also people are using it for things like fertility treatments to get

pregnant.

All I know is I do not get all the viruses & bronchitus & pneumonia or other

infections or complications that a lot of other CFIDS people get.

I do not want to go without it. When I stopped for a few months, By health

deteriorated quickly.

I think it is still obtainable with the right Rx & Dx.

I know my Pharmacy has some extra on hand for new customers & can probably

ship it out of state.

It is also possible to have home infusions set up.

I think it has a better track record for helping more people with CFIDS than

any other treatments so far.

The only side affects are caused by needing to find the right brand of

Gamma & adjusting the dosage & speed of delivery. It takes a little time but

those who have stuck it out have found it worth while.

[Guest guest]

Well, there are many different brands & types of Gamma with different bases

& percentages of solution.

I am on Gamimune N 10 % in a base of glycine by Bayer which is one of the

best. It has been treated to filter out hepatitus & other viruses. I know the

5% is in a base of maltose.

No, it does not have mercury in it.

I tried 3 different brands before & I found this was the best for me & have

been on it for about 7 years.

I cannot remember the ingredients in the other ones but I do know that

they have consistently improved the product over the past few years.

Where do you get your information about the mercury?

I know that Bayer now does a solvent/detergent cleansing treatment but they

then clean & filter out any traces of it.

I & others who have MCS & are very sensitive are able to tolerate it.

It is the only thing that has made a major significant, consistant

improvement in my illness.

[Guest guest]

Hi Christie,

I tried to scan & e-mail my Dr.s justification for Gamma & the tests but

they did not go through.

But I put most of the info in the posting I sent already anyway. There

should be enough information there to give your Dr & he can look up the

article in the New England Journal of Medicine also.

I am taking the Gamma ongoing so any test results would not show a

deficiency.

It was over 7 years ago when I had the tests & was first diaognosed so I

cannot remember all of the tests. But I think in the letter he alluded to the

results that helped with the diagnosis. All that I can remember I put in the

posting. Also I just posted the specific Gamma that I take in an earlier post

today.

I hope this helps.

[Guest guest]

Glad to hear you are much better gamma globulin Cbuf. I was wonder if you

know what the difference is between this brand and the others. What is the

difference in ingredients? For example, in many mercury is added, known to

be one of the most toxic substances on the planet. Just curious.

At 03:46 PM 11/6/99 EST, you wrote:

>From: Cbuf1920@...

>

>It took about 3 months of migraine & other reactions for the Dr to find the

>right brand & doasage of Gamma Globulin for me but it was worht it to me.

> I feel there is VERY minimal chance of getting something from the blood

>products. Definitely not hepatitus or AIDS.

> They have instituted more rigorous processing to make it safer recently &

>that is one of the reasons they said there was a shortage. They had to to set

>up a new manufacturing process & equipment.

> But they did use a lot of rthe Military during Kuwait. & I think they are

>selling it overseas for more profit.

> Also people are using it for things like fertility treatments to get

>pregnant.

> All I know is I do not get all the viruses & bronchitus & pneumonia or other

>infections or complications that a lot of other CFIDS people get.

> I do not want to go without it. When I stopped for a few months, By health

>deteriorated quickly.

> I think it is still obtainable with the right Rx & Dx.

> I know my Pharmacy has some extra on hand for new customers & can probably

>ship it out of state.

> It is also possible to have home infusions set up.

>

> I think it has a better track record for helping more people with CFIDS than

>any other treatments so far.

> The only side affects are caused by needing to find the right brand of

>Gamma & adjusting the dosage & speed of delivery. It takes a little time but

>those who have stuck it out have found it worth while.

>

>

>

>

>>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]

Hi,

I also have the same infections as you did, but all my Ig subclasses came

back this week as normal. Did you have these or tests in addition to these

done to get dx of Disgammaglobunemia? I checked my mail to see if I asked

you this before because I know I did ask here, so if I am repeating myself,

please forgive! This does sound like promising as it is actually treating

an actual problem as opposed to the " fighting the ghosts " treatents. What

kind of gamma ended up working for you?

Take care,

Christie

At 03:46 PM 11/6/99 EST, you wrote:

>From: Cbuf1920@...

>

>It took about 3 months of migraine & other reactions for the Dr to find the

>right brand & doasage of Gamma Globulin for me but it was worht it to me.

> I feel there is VERY minimal chance of getting something from the blood

>products. Definitely not hepatitus or AIDS.

> They have instituted more rigorous processing to make it safer recently &

>that is one of the reasons they said there was a shortage. They had to to

set

>up a new manufacturing process & equipment.

> But they did use a lot of rthe Military during Kuwait. & I think they are

>selling it overseas for more profit.

> Also people are using it for things like fertility treatments to get

>pregnant.

> All I know is I do not get all the viruses & bronchitus & pneumonia or

other

>infections or complications that a lot of other CFIDS people get.

> I do not want to go without it. When I stopped for a few months, By health

>deteriorated quickly.

> I think it is still obtainable with the right Rx & Dx.

> I know my Pharmacy has some extra on hand for new customers & can probably

>ship it out of state.

> It is also possible to have home infusions set up.

>

> I think it has a better track record for helping more people with CFIDS

than

>any other treatments so far.

> The only side affects are caused by needing to find the right brand of

>Gamma & adjusting the dosage & speed of delivery. It takes a little time but

>those who have stuck it out have found it worth while.

>

>

>

>

>>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]

At 08:31 PM 11/6/99 EST, you wrote:

>From: Cbuf1920@...

> Where do you get your information about the mercury?

Someone on this list said that very recently. Also, people in a mercury

support network, DAMS, said that mercury has been used in vaccines for

children. Hard to believe, I know.

> I & others who have MCS & are very sensitive are able to tolerate it.

> It is the only thing that has made a major significant, consistant

>improvement in my illness.

>

>>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]

Gamma Globulin currently is very safe. They have set up new cleansing &

filtering process in the last few years.

It goes through so many processes that Hepatitus & AIDS etc cannot survive.

I have no qualms about using it. I think a lot of Drs are behind in current

knowledge about it & are also do not know much about it in general so do not

feel confident prescribing it.

[Guest guest]

there is nothing unusual about using b12 shot and gamma gobulin -- some folk

respond to them & some folk don't -- how long was our friend sick before she got

the shot?

Steve

[Guest guest]

Hi, Jackie,

>She said the doctor claimed an 85% success rate.

>

>I'm extremely skeptical by nature. One thing is this woman seemed >bright

>and didn't seem weird. Of course the doctor's claims are >probably way

>overstated. When I mentioned this treatment to my CFS >doctor, he said he

>would definitely not recommend it because of the >gamma globulin. Since

>it's a blood product, he said I would be putting >myself at risk.

>

>What do you guys think? I know blood is more carefully screened now >for

>HIV etc. But do you think it's still too risky?

------

From: Cbuf1920@...

Subject: Re: Gamma globulin

>

>Gamma Globulin currently is very safe. They have set up new cleansing &

> >filtering process in the last few years.

>It goes through so many processes that Hepatitus & AIDS etc cannot

> >survive. I have no qualms about using it. I think a lot of Drs are

> >behind in current knowledge about it & are also do not know much about

> >it in general so do not feel confident prescribing it.

There have been a couple of moderate-sized, double-blind tests of gamma

globulin as a treatment for CFS, but they showed nothing statistically

significant. However, they suffer from the usual shortcomings of early

studies on CFS treatments - the presence of subgroups, and the lack of a

good short-term indicator of health and functionality for PWCs.

As for safety - the detergent/heat treatment that is used now destroys all

of the viruses that are typically tested for - HIV, Hep B, Hep C, EBV, etc.

But I don't think anyone has tested for HHV6. Also, there are any number of

unknown infectious agents that could be transmitted, which may or may not be

killed by this purification procedure. I (as a former researcher, having

worked in the blood substitute field) would not want to bet my life - or

even my current health (such as it is) - on the health of the hundreds of

volunteers & paid donors who contributed to this product, at least without a

much greater chance of success.

Note that gamma globulins are a much larger molecule than the transfer

factors; the purification process has a much more difficult time separating

viruses, 'mad cow disease' amyloid, etc. from gamma globulins than from TF.

Jerry

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

HI Jackie -

I take weekly B12 injections due to a deficiency which

showed up in my CBC. They take a little while to

build up - I noticed my energy level was improving

after I had about 5 shots. I recommend this only if

your doc believes you have a B12 deficiency, as they

are expensive and frequently insurance companies don't

pay for them as they are seen to be " not medically

necessary. "

Don't know about the gamma globulin.

Best, Jennie

--- Jackie Naiditch <french@...> wrote:

> There is a local doctor who treats CFS with

> injections containing

> B12,

> B complex, and gamma globulin. I talked to a friend

> of a friend who

> went to this doctor. She'd had CFS for 3 years when

> she saw him.

> She

> said that his treatment got her to feeling totally

> normal in 2

> months.

> She said the doctor claimed an 85% success rate.

>

> I'm extremely skeptical by nature. One thing is

> this woman seemed

> bright and didn't seem weird. Of course the

> doctor's claims are

> probably way overstated. When I mentioned this

> treatment to my CFS

> doctor, he said he would definitely not recommend it

> because of the

> gamma globulin. Since it's a blood product, he said

> I would be

> putting

> myself at risk.

>

> What do you guys think? I know blood is more

> carefully screened now

> for HIV etc. But do you think it's still too risky?

>

> Jackie

>

>

>

__________________________________________________

[Guest guest]

Congrats a ,

That is great your insurance will pay. If your Dr. cannot find a supplier,

let me know as my Pharmacy has good sources for it.

You need to find the right brand of product & rate of flow & take it slow at

first. But it has really helped a lot of people.

I could not survive without it.

I think Gamimune N 10% by Bayer Corp. is the best brand & that is what I

use. It is in a base of glycine.

The only problems I have had is when the drip rate is going to fast & any

symptoms disappear as soon as the drip rate is slowed down again.

Good luck, If you have any more questions about it you can always back

channel me.

Cbuf1920

[Guest guest]

a,

I considered GG a couple years ago but decided against it because I believe

each dose is made from the blood of hundreds of people. I wasn't sure given

my weakened condition at that time if it was wise to expose myself to

possibly more bacteria or viruses. Maybe they are able to properly screen

out any infectious or bacterial agents, I don't know. Steve Bullock

Gamma Globulin

> Well, my insurance is going to cover my IV Gamma Globulin treatments!

> So, I begin on Thursday next week. I have read the past posts on it.

> I am wondering though if anyone has anything more to say about it.

> From what I read on the list it seems that people have had some

> degree of success with it.Any input is appreciated! a

>

>

>

> 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]

They screen & clean the Gamma much better than years ago.

Just in the last few years, they have set up more filtering & new cleaning

procedures.

I know people who were very sick & weakened like I was & it helped

tremendously. Now I do not get colds or flus or infections or complications.

I heal quickly & am able to function on a much higher level than before.

I do not worry about the safety of the product & I have been doing it for 8

years.

[Guest guest]

Hi Christie,

My immune function tests are very low. My NK ceells and B Lymphs(?) Sorry,

this is pretty new to me. Also, thge dx of positive Myco Fermentans, C.

Pneumoniae and Trichosporon influenced my insurance carrier to cover the

Gamma. a

[Guest guest]

I was on IM for a while. The supply varies over the year. During

hurrican season, the Red Cross has to stock up in case of hepatitis, and

then it can be almost impossible to get.

Cbuf1920@...

09/29/00 04:28 PM

Please respond to

egroups

cc:

Subject: Re: Gamma Globulin

Congrats a ,

That is great your insurance will pay. If your Dr. cannot find a

supplier,

let me know as my Pharmacy has good sources for it.

You need to find the right brand of product & rate of flow & take it slow

at

first. But it has really helped a lot of people.

I could not survive without it.

I think Gamimune N 10% by Bayer Corp. is the best brand & that is what

I

use. It is in a base of glycine.

The only problems I have had is when the drip rate is going to fast & any

symptoms disappear as soon as the drip rate is slowed down again.

Good luck, If you have any more questions about it you can always back

channel me.

Cbuf1920

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]

What do you have to do to get state Med i Cal???????/

Carole

[Guest guest]

You have to be poor & have no other medical Insurance & live in California to

qualify for California Medi-Cal.

MediCare will pay for GG IV if you get it through your Dr. or Clinic.

[Guest guest]

I recently asked my my Pharmacist who only deals with GG & Blood products &

Medi-Cal & Medi-care & he said they do pay for it.

I will ask him again & try to find out more info.

[Guest guest]

IV Gamma Globulin Therapies / Lyme

Steves Corner:::

<A HREF= " http://www.angelfire.com/ny/lymedisease/mar2000.html " >

http://www.angelfire.com/ny/lymedisease/mar2000.html</A>

[Guest guest]

Hi Cbuf,

I checked with a Medicare billing specialist, she said Medicare does not

pay for IV-GG under any circumstance.

Al

Re: Gamma Globulin

> You have to be poor & have no other medical Insurance & live in California

to

> qualify for California Medi-Cal.

> MediCare will pay for GG IV if you get it through your Dr. or Clinic.

>

[Guest guest]

Hi Cbuf,

I would like to contact your pharmacist about GG & Medicare, could you

please provide me provide me his name, phone # and email address.

Thanks,

Al

Re: Gamma Globulin

> I recently asked my my Pharmacist who only deals with GG & Blood products

&

> Medi-Cal & Medi-care & he said they do pay for it.

> I will ask him again & try to find out more info.

>