Gamma globulin

Ema

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so given as an im injection not an infusion?
I think we are possibly conflating gamma globulin IM injections like they used to give those in the military with the newer IgG products possibly.

Gamma globulin shots are pretty cheap if you can find anyone to do them anymore.
 

heapsreal

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I think we are possibly conflating gamma globulin IM injections like they used to give those in the military with the newer IgG products possibly.

Gamma globulin shots are pretty cheap if you can find anyone to do them anymore.
ok, what they call normal immunoglobulin is different to gammaglobulin in that the gamma is igg where normal immunoglobulin is a combination of igm/iga/igg???
 

Misfit Toy

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@Rrrrr, I don't get daily shots, but IVIG at an infusion center but I like the idea of subQ every day. There is a lot of talk about this and I talked to a Gammaguard rep that thinks it will happen in the future.

@ggingues, wanted to let you know, I haven't forgotten about the supplements...will send you a PM soon. Also, the one day of major energy I have is great, but I want more! Last month...I baked cookies, made a pie, fresh applesauce, cleaned my whole place; it was like being on the best drug ever! Next day though...zonked!
 

Rrrr

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@Rrrrr, I don't get daily shots, but IVIG at an infusion center but I like the idea of subQ every day. There is a lot of talk about this and I talked to a Gammaguard rep that thinks it will happen in the future.

@ggingues, wanted to let you know, I haven't forgotten about the supplements...will send you a PM soon. Also, the one day of major energy I have is great, but I want more! Last month...I baked cookies, made a pie, fresh applesauce, cleaned my whole place; it was like being on the best drug ever! Next day though...zonked!
@Misfit Toy, how long have you been on IVIG? and how long did it take to feel those great results you speak of? (however, it sounds like it does not make PEM disappear?)
 

Rrrr

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Talked to the doctor's office that gives in-house gg (the shots they give patients in their office)

- Their gg in-house brand is called Gamastan.
- This brand is an IM shot, and it is not the same as the gg brand that you'd use for an infusion (those two infusion brands are Hizentra and Gammagard). Diff people react differently to the different brands.
- Gamastan is via IM, and they do 2 cc (but you can get just 1 cc if you want to start slow)
- 1 cc = xx grams of gg (the person i talked to does not know)
- $60-70, per shot, and i think it is weekly (not sure)
 

Misfit Toy

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I would only do shots either subQ or with Gammaguard. I have only had 3 infusions so this is too soon. I still have PEM and fatigue and CFS. My adrenals are still not right.
 

Ema

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Talked to the doctor's office that gives in-house gg (the shots they give patients in their office)

- Their gg in-house brand is called Gamastan.
- This brand is an IM shot, and it is not the same as the gg brand that you'd use for an infusion (those two infusion brands are Hizentra and Gammagard). Diff people react differently to the different brands.
- Gamastan is via IM, and they do 2 cc (but you can get just 1 cc if you want to start slow)
- 1 cc = xx grams of gg (the person i talked to does not know)
- $60-70, per shot, and i think it is weekly (not sure)
Well that took forever to find but here is the strength of Gamastan (I think!!):

0.165 g in 1 mL

http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=561f48de-2697-4a35-8233-bd1cdb73438f

So a 2 ml injection would only give you 0.33 g.

A loading dose is 1.3 mL/kg...so for a 60 kg individual, that would be 78mL (which is far from 2 mL injection). And should be roughly equal to 12.87g.

GAH. MATH. PLEASE CORRECT.

But clearly it does work somehow or doctors wouldn't have given it for so many years. Need more explanation...
 

Hanna

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This is a wonderfully informative thread and I wish you the best of luck as you embark upon your treatment.

I have to correct one thing though regarding your diagnosis. To qualify for CVID, you must have low total IgG, low IgM or IgA and show an antibody deficiency by failing a vaccine challenge. This is a pretty high bar to meet and it is different than hypogammaglobilinemia or selective subclass deficiencies. It's a rare immunologist that will agree to treat subclass deficiencies. Generally you will also have to prove a history of infections requiring prophylactic antibiotic regimens and costly hospital stays. It can be done but it is a hard and long battle for most.

Currently there is a war waging among insurance companies that no longer wish to pay for anything other than CVID (and even more serious immune deficiencies) until your total IgG level is less than 400. Most immunologists agree that anything under 600 means you functionally have no antibody immune system and that these new guidelines are insane. Selective subclass deficiencies are almost impossible to get covered under the new guidelines.

If insurance companies do not get enough pushback from patients and doctors, these new guidelines will almost certainly be expanded to all insurance companies in all regions. The Primary Immune foundation is aware and fighting this battle for us but they need our support if more of us wish to qualify for this treatment.

I encourage everyone to get their total IgG and subclasses tested. If we can show enough of us have these deficiencies in ME/CFS, we will have better luck extending insurance coverage to more people and getting better research studies done to show why these immune abnormalities exist.
I received yesterday my results for
Immunoglobulin A : 79.5 (range 70-400)
Immunoglobulin G : 698.7 (range 737-1607) depressed
Immunoglobulin M : 257.8 (range 40-230) elevated
I don't have a clue what to do with this result. So does my GP :(.
Don't have subclasses done.
Thank you if someone understands what it may indicate about what is going on with the immune system
 

Ema

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I received yesterday my results for
Immunoglobulin A : 79.5 (range 70-400)
Immunoglobulin G : 698.7 (range 737-1607) depressed
Immunoglobulin M : 257.8 (range 40-230) elevated
I don't have a clue what to do with this result. So does my GP :(.
Don't have subclasses done.
Thank you if someone understands what it may indicate about what is going on with the immune system
@Hanna, It just so happens I have a friend in Israel who I think will be able to help you out.

Are you on Facebook? That would be the easiest way to get the two of you in touch, I think.

I would say that there is a very strong likelihood that you have Common Variable Immune Deficiency. That is defined by a low IgG level, a low IgA and/or IgM (I consider your IgA low even though barely in range) and failure of a vaccine challenge. So you need a clinical immunologist to straighten this out.
 

Rrrr

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I think we are possibly conflating gamma globulin IM injections like they used to give those in the military with the newer IgG products possibly.

Gamma globulin shots are pretty cheap if you can find anyone to do them anymore.
Hi @Ema: Are these older types of gg shots cheap AND effective? Why are they not used anymore?
 

Ema

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Hi @Ema: Are these older types of gg shots cheap AND effective? Why are they not used anymore?
I honestly don't know. I think there was a shortage around the time of the Gulf war and they fell out of favor.

I couldn't find anyone in my area to give then. I couldn't find a pharmacy to supply them.

But they must work at least somewhat or they wouldn't have done for so long.

I do think maybe the effects are more temporary than what is needed for serious immune deficiencies though. You see them promoted more for travel to hepatitis endemic areas for example.
 

Rrrr

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@Ema: the doctor's office that i know that uses it says that it *is* effective -- they mentioned how one person used to get the flu every winter, but since taking the IM shots of Gamastan they have not gotten any winter flu for the past few years. so that was interesting to hear. certainly it has less gg in it than the infusion-oriented brands (hizentra and gammagard).
 

Sushi

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I honestly don't know. I think there was a shortage around the time of the Gulf war and they fell out of favor.

I couldn't find anyone in my area to give then. I couldn't find a pharmacy to supply them.

But they must work at least somewhat or they wouldn't have done for so long.

I do think maybe the effects are more temporary than what is needed for serious immune deficiencies though. You see them promoted more for travel to hepatitis endemic areas for example.
I used to get these to theoretically prevent Hep A while I was in India. I didn't notice any effect but then my immune system was different then.

Sushi
 

heapsreal

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The half life of gamaSTAN which is the immunoglobulin used for IM injection is approx 3 weeks, so do people think that injections every 3 weeks would be adequate??

Next can someone send me some freebies;):lol:
 

heapsreal

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IVIG therapy can be extremely expensive costing several thousand dollars a month. Both Dr. Teitelbaum and Dr. De Meirleir have found that using low doses to cut costs can be effective. Finding no extra benefits from IV’s Dr .Teitelbaum advises using the less expensive intramuscular injections (@$50/vial)

http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/.

@Rrrr these IMI $50/vial mentioned by teitelbaum maybe the type your talking about getting shots at the doctors office? doesnt say a brand though.
 

Rrrr

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One quick question, those on any of the different gamaglobulins, have they seen increases in nk function or maybe a drop in viral titres?
@heapsreal, i can let you know in a few months! we did my lab tests (NK function and virals) just last week, before starting the gg shots. but i am also on antiviral pills, too (famvir now and maybe valtrex later)

by the way, this is the pharmacy i am using
http://www.accredo.com/

Accredo Customer Service number
24 hrs/day: 877-315-6140 (to get a live person, press 2, press 1, press 1)

they have bent over backwards to help me get this med, in conjunction with my doctor's office.
i wonder if they work with australian doctors? do you want me to ask them? or you can email them to ask. i'm sure their email is on their website.
 

Rrrr

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just found this quote from Dr. Jacob Teitelbaum:

http://www.townsendletter.com/Nov2013/fibro1113.html

"Of special interest to me is research showing a relationship between the immune dysfunction, neuropathic pain, and autonomic dysfunction being found in fibromyalgia. Researchers have found that over 50% of people with fibromyalgia have what is called small fiber neuropathy (SFN). Other researchers were finding an increased prevalence of IgG1 and 3 subtype antibody deficiencies. Interestingly, both of these respond well to intravenous gamma globulin (IVIG). Although most people do not need this aggressive treatment, it has been very helpful in the 5% to 15% of the sickest people who do not respond adequately to other treatments, and especially in those who have severe autonomic dysfunction with low blood pressure and orthostatic intolerance; that is, people who are often bedridden. Dr. Mark Sivieri in Laurel, Maryland, brought this to my attention, and is doing outstanding clinical and research work in exploring the effectiveness of IVIG and the interrelations between IgG subtype deficiency, small fiber neuropathy, dysautonomia, and response to IV gamma globulin. I suspect that he will have some very interesting findings to release over the coming years."
 

Rrrr

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i wonder what the combination of all these at once would do to a person:

1. gamma globulin
2. GcMAF
3. antiviral meds (e.g. Famvir)