Gamma Globulin and Fibro

[Straight Shooter]

Hello, I am a newbie but am looking for some help. I am male 55 years old ex professional athlete. When I was 8 years old I had a bout with what is now known as Fibro .At the time no one knew anything about this and I missed 6 months of school. I was tested for everything and my blood work was sent to some of the best institutions in the country,all came back fine.they tried everything and no answer.
My family physician at that time had a conversation with my mother and told her he was at the end of what he could do and wanted to try a last ditch thing. It was an injection of Gamma Globulin ,within 3 days I was up running around and back in school the following Monday.
Push forward 42 years of no pain no fatigue I was done with sports and owned a development company and the crash happened. I started having panic attacks then the pain started all over again with fatigue. They again ran every test they could and diagnosed me with fibro. Each doctor I have seen I have told this story to about the Gamma Globulin injection and not one doctor would listen to me. But they are so quick to want to push all the other drugs instead of revisiting that this one injection jump started my body and I had 42 years of no pain ect.I am an engineer now and things are black and white ,this injection worked for me but not one doctor will even consider it again! Has anyone had this and does anyone know where I might be able to get this injection again.

 

[Remy]

Hello, I am a newbie but am looking for some help. I am male 55 years old ex professional athlete. When I was 8 years old I had a bout with what is now known as Fibro .At the time no one knew anything about this and I missed 6 months of school. I was tested for everything and my blood work was sent to some of the best institutions in the country,all came back fine.they tried everything and no answer.
My family physician at that time had a conversation with my mother and told her he was at the end of what he could do and wanted to try a last ditch thing. It was an injection of Gamma Globulin ,within 3 days I was up running around and back in school the following Monday.
Push forward 42 years of no pain no fatigue I was done with sports and owned a development company and the crash happened. I started having panic attacks then the pain started all over again with fatigue. They again ran every test they could and diagnosed me with fibro. Each doctor I have seen I have told this story to about the Gamma Globulin injection and not one doctor would listen to me. But they are so quick to want to push all the other drugs instead of revisiting that this one injection jump started my body and I had 42 years of no pain ect.I am an engineer now and things are black and white ,this injection worked for me but not one doctor will even consider it again! Has anyone had this and does anyone know where I might be able to get this injection again.

I do subQ immunoglobulins (Hizentra) which is a very similar sort of deal. Some people use that product to do smaller daily or weekly injections as well.

It is hard to get. Typically you will have to visit a clinical immunologist and have tests of your own IgG levels along with subclasses 1-4. There is also a vaccine challenge to see how well your system responds by making antibodies to a common antigen like pneumonia.

Basically this treatment has replaced the gamma globulin injections. It's a lot less painful but it's also a lot more expensive and hard to get.

I'd still get tested though. The tests are typically covered by insurance and a lot of us have immunodeficiencies of one sort or another. If you can find a good clinical immunologist, they might be able to help you determine if the treatment is a match for you.

Good luck!

 

[Straight Shooter]

Remy,
Thank you for your time to respond to my post. This has been very frustrating.I have found a clinic in Arizona that based on what I've read do advocate this treatment. I was not aware that the Gamma Globulin had been changed to what you have cited. Just since the Gulf War their has been a shortage of Gamma Globulin. I have a phone consult with the Doctor from Arizona and will once again tell my story and see where it goes from there.Again thank you!

 

[Who Me?]

Dr Teitlebaum has a protocol for using IVIG intra muscular injections. I thought I had the protocol somewhere. I'll have to look for it.

Here is one thing I found. @jacob Teitelbaum MD is a member of the forum. Maybe he'll see this and answer. @Strike me lucky might remember too.

http://www.ei-resource.org/expert-c...ing-viral-infections-in-cfs-and-fibromyalgia/

Just found this which I think is Dr. Teitlebaums' protocol

"Treat with gamma globulin (e.g., Gammastan): 2 cc by intramuscular injection (IM), once a week for 6 doses, or 4 cc every other week for 3 doses. (IM is much less expensive than intravenous delivery.) This drug can be a dramatically effective way to jump-start your immune system."

 

[Straight Shooter]

Hello who me, I actually spoke to his office in Hawaii and have a phone call scheduled for tomorrow with them.
Thank you !

 

[Who Me?]

@Straight Shooter if you want someone to get an alert when you talk to them, put an @ sign in front of their user name. See how our name looks? Good luck.

Also maybe look into Holtorf in California.

 

[Straight Shooter]

Thanks Who Me, I also found someone in Scottsdale Arizona that I will be speaking to today for consult.
The Medical field is very frustrating!

 

[Who Me?]

The Medical field is very frustrating!

That's an understatement! Lol

 

[ShyestofFlies]

I'm pretty sure Dr. Levine in NYC does this depending on bloodwork and other treatment, you could call her office and ask to be sure.

 

[Straight Shooter]

I do subQ immunoglobulins (Hizentra) which is a very similar sort of deal. Some people use that product to do smaller daily or weekly injections as well.

It is hard to get. Typically you will have to visit a clinical immunologist and have tests of your own IgG levels along with subclasses 1-4. There is also a vaccine challenge to see how well your system responds by making antibodies to a common antigen like pneumonia.

Basically this treatment has replaced the gamma globulin injections. It's a lot less painful but it's also a lot more expensive and hard to get.

I'd still get tested though. The tests are typically covered by insurance and a lot of us have immunodeficiencies of one sort or another. If you can find a good clinical immunologist, they might be able to help you determine if the treatment is a match for you.

Good luck!

May I ask one more question the treatment you get is that made from blood plasma and if so what risks if any have you been told being it is made from plasma. I would assume these days it is checked out thoroughly.

 

[Who Me?]

"Gamma globulins are a class of globulins, identified by their position after serum protein electrophoresis. The most significant gamma globulins are immunoglobulins (antibodies), although some immunoglobulins are not gamma globulins, and some gamma globulins are not immunoglobulins."

I'm waiting right now for a diagnosis which should qualify me for immunoglobulin. I wouldn't hesitate. And since you've had it before and it helped I'd go for it

I remember @Remy telling me the risks are really low.


https://en.m.wikipedia.org/wiki/Gamma_globulin

 

[Remy]

May I ask one more question the treatment you get is that made from blood plasma and if so what risks if any have you been told being it is made from plasma. I would assume these days it is checked out thoroughly.

It's purified...much more so than the old gamma globulin products. It has to be because it is used IV as well. It's cleared as well as possible for all pathogens including prions. Of course, nothing is foolproof but I'm comfortable with the risks.

 

[Straight Shooter]

@Remy , Thank you I have found 2 doctors that prescribe this protocol.

 

[Justin]

Dr Oaklander from Harvard is using IVIG for Small Fiber Neuropathy which she has been finding in many that have fibromyalgia.

I am glad you found these Drs.