Gamma globulin

[Daffodil]

KDM also gives IVIG to his patients in Brussels sometimes. I am not sure what criteria he uses to determine who is a good candidate. he says the cost is about 400 euros a month and he gives it for 6 months I think.

I am wondering if, in a year or so, I can go to Brussels and bring it back with me, because I could never afford it here.

I am confused as to whether it is helping people, though. I did read about one woman who maintains a good recovery as long as she stays on it. ...but there are so many "recovery" stories out there, it is hard to make heads or tails of anything.

I was looking into interferon, but KDM told me that it would not help because we are not trying to treat a virus (at least in my case??)

I have also read about a woman maintaining recovery as long as she takes interferon

 

[Rrrr]

April 14, 2014 update from the person who started this thread

As those of you who are following my thread may recall, for the last 1.5 months I have been trying very low doses of gamma globulin. As of last week, I started my 3rd brand of gamma globulin shots (all subq shots). I am trying all three to find the best one. Not sure yet.

I have now tried GammaSTAN (in my doctor's office), GammaGARD (at home) and as of last night I have now done 3 shots of the GamaNEX-C version of gamma globulin (I started this last brand 6 days ago).

Like I said, I am doing tiny amounts. With the GammaGARD I got up to 1 gram of gamma globulin (that was 10 cc of product). That seems to make me very sick, so I think either the dose was way to high for me, or the brand was not good for me. With the GamaNEX-C, which is the one I'm doing now, I'm doing even less: so far it has been 1.5 cc, 2 cc and 2 cc shots (which is about 1/5th of a gram of gamma globulin).

Something about all the different brands makes me feel worse the day after the shot. So I have been coupling the shots with a coffee enema, on the assumption that there is something toxic in the products that I'm reacting to, or maybe I'm getting inflammation from the shots. (Coffee enemas help release toxins in the liver and also they produce glutathione, which I think would lower inflammation, or at least I hope it does.)

Either way, coupling the shots with a coffee enema, done the same day as the shot or the next day, seems to lift the sicker/bad feeling I get from the shot -- and it lifts it almost immediately. Which is pretty shocking to me.

I know this is still early days, and the dose I'm doing is super low, but today I was able to change the bed sheets and make the bed *without* feeling like it was too hard to do. In other words, I did not have to push past my usual utter and complete exhaustion to do this task. That is rare for me. A good sign, I think.

Of course, time will tell.

 

[Rrrr]

KDM also gives IVIG to his patients in Brussels sometimes. I am not sure what criteria he uses to determine who is a good candidate. he says the cost is about 400 euros a month and he gives it for 6 months I think.

I am wondering if, in a year or so, I can go to Brussels and bring it back with me, because I could never afford it here.

I am confused as to whether it is helping people, though. I did read about one woman who maintains a good recovery as long as she stays on it. ...but there are so many "recovery" stories out there, it is hard to make heads or tails of anything.

I was looking into interferon, but KDM told me that it would not help because we are not trying to treat a virus (at least in my case??)

I have also read about a woman maintaining recovery as long as she takes interferon

thanks for posting this. how/where do you get interferon??

 

[Daffodil]

you can get interferon from your doctor, if he is willing to prescribe it. I am not sure if insurance will cover it. it is very expensive in north America, I believe. however, there are overseas sources that are much cheaper.

 

[boohealth]

They all include a prion reduction filtering step no matter the method.

This is not true, Ema, from what I see in the PDF side by side comparison below (link provided)

"The differences between the products, and the factors to consider when choosing a product, include production process, efficacy, safety, tolerability, and convenience of product formulation. The production and purification processes, while necessary, often affect the biological activity of the final product. While use of any biological product is at risk for contamination with infectious agents, the viral inactivation processes used for Gamunex® and Carimune NF® are the only that have been shown to remove pathogenic prions in addition to viruses."

However, Carimune is higher in sugar and thus the osmolarity is harder for the kidneys and has been associated with higher rates of acute renal failure. Therefore IMHO if you can get Gamunex it's preferable.

www.phscorporation.com/IVIGComparison.pdf‎

 

[Ema]

This is not true, Ema, from what I see in the PDF side by side comparison below (link provided)

"The differences between the products, and the factors to consider when choosing a product, include production process, efficacy, safety, tolerability, and convenience of product formulation. The production and purification processes, while necessary, often affect the biological activity of the final product. While use of any biological product is at risk for contamination with infectious agents, the viral inactivation processes used for Gamunex® and Carimune NF® are the only that have been shown to remove pathogenic prions in addition to viruses."

However, Carimune is higher in sugar and thus the osmolarity is harder for the kidneys and has been associated with higher rates of acute renal failure. Therefore IMHO if you can get Gamunex it's preferable.

www.phscorporation.com/IVIGComparison.pdf‎

The information must be out of date.

All IVIG products go through processes to remove prions to the best of our current ability.

Here is a link to a study from 2008 showing Gammagard to remove prions:

http://www.ncbi.nlm.nih.gov/pubmed/18167162

I think this study is the one that also provides information on prion removal in IVIG products but I can't find the full text at the moment.

Vox Sang. 2010 Jan;98(1):12-28. doi: 10.1111/j.1423-0410.2009.01226.x. Epub 2009 Jul 29.
Intravenous immunoglobulin G: trends in production methods, quality control and quality assurance.
Radosevich M1, Burnouf T.
Author information

Abstract
Intravenous immunoglobulin G (IVIG) is now the leading product obtained by fractionation of human plasma. It is the standard replacement therapy in primary and acquired humoral deficiency, and is also used for immunomodulatory therapy in various autoimmune disorders and transplantation. Over the last 30 years, the production processes of IVIG have evolved dramatically, gradually resulting in the development of intact IgG preparations safe to administer intravenously, with normal half-life and effector functions, prepared at increased yield, and exhibiting higher pathogen safety. This article reviews the developments that have led to modern IVIG preparations, the current methods used for plasma collection and fractionation, the safety measures implemented to minimize the risks of pathogen transmission and the major quality control tests that are available for product development and as part of mandatory batch release procedures.

PMID:

1966002

A specialty pharmacist could provide you with more data if you need it on any particular brand.

 

[Rrrr]

hi all, i'm the person who started this thread, now reporting in with another update.

ready? hold on to your hats!: i was able to go out last night to a dinner party for the first time in 5.5 years. i'm writing this in shock and disbelief. i went to the party AFTER i changed the bed sheets in the morning, and after i did more laundry and a coffee enema in the afternoon. whaaaaat?????

as i sit here typing this, i have red flashing lights in my head and a internal megaphone shouting at me: "Shut up! Don't report this publicly, you fool, because all these gains will disappear in an hour (or a day or a week or a month), like always when you get what appears to be help from some supplement or med."

anyway, i'm ignoring that warning and telling you: it was freaking incredible to go to a party, and talk to people, and then sit down at the dinner table and talk to people. AMAZING. i was going through the motions, waiting for the utter exhaustion to hit, and it just didn't. finally, after we ate (and all the blood was going to my stomach to help me digest, i assume), i did get the usual exhaustion "hit." but really, it should have hit hours and hours earlier in the day, if it were a normal day. it should have hit when i was simply changing the bed sheets in the morning!

when i got back from the dinner, i shot up again with my low dose of Gamunex-C. this time i did even more. i did 3 cc (which is 1/3rd of a gram of gamma globulin). i also did all the supplements i could that were anti-inflammatory.

woke up feeling like hell. just hell. but then once i started moving, guess what? yes, i'm actually doing well. it appears that i don't have PEM (post-exertional collapse) from yesterday. WHAT? crazy, right???

please don't be all happy for me yet. i am pretty sure i'll lose all gains, like i always do. but there you have it, my first dinner party in 5.5 years. it seems to me that this is happening as a result of gamma globulin, and in particular, the Gamunex-C i started last week and have been doing as super super low doses.

best,
rrrr

 

[heapsreal]

take things while ya can i say.
good on ya Rrrr

 

[Ema]

Thought you all might find this historical perspective interesting...apparently the earlier gammaglobulin shots were not exactly the same thing as what we currently use. Sounds like large strides have been made in purification and safety. This is from the article I cited above in this thread.

Historical perspectives: from fragmented to intact IgG

Normal intact immunoglobulins for intramuscular use

A process for the large-scale isolation of IgG from human plasma using cold-ethanol and pH fractionation steps was developed in the 1940s [5,6]. The process did not include additional purification steps, resulting in the isolation of an IgG fraction that comprised 70–80% monomers and which contained substantial amount of IgA and IgM.

When infused by the i.m. route, such preparations showed usefulness against measles and hepatitis A infections, and effectiveness in reducing infections in patients with X-linked agammaglobulinaemia.

These preparations exhibited the biological functions of humoral antibodies, had normal physiological half-life, were capable of com- plement activation in the presence of antigens and with opsonizing properties. Such products were not adapted for the treatment of severe infectious diseases. Indeed, attempts to inject these preparations in immunodeficient patients by the i.v. route resulted in a high incidence of life-threatening anaphylactoid reactions.

These side-effects were attributed to non-specific spontaneous complement activation resulting from the presence of immunoglobulin aggregates [7].

Other factors like the presence of trace amounts of highly active proteases may also have been the cause of side-effects, including hypotension [7].

Aggregate formation was thought to occur artificially during plasma fractionation processes as a result of contact of the IgG-rich solutions with hydrophobic surfaces or due to exposure to excessively elevated temperatures. IgG aggregates are thought to mimic the steric effect of antigen–antibody complexes, thereby inducing complement activation in the absence of antigens when entering the blood circulation upon i.v. injection.

Restricting the administration of these products to the intramuscular route resulted in inherent disadvantages of small doses associated with painful local irritation at the site of injection and slow absorption (4 to 6 days).

Processes to modify IgG by enzymatic cleavage or chemical treatments were then eventually implemented, some resulting in major impairments of the pharmaco- kinetic, pharmacodynamic and functional properties of IgG, while others had an unexpected significant impact on viral safety.

 

[Rrrr]

@Ema, i really appreciate all yr research.

 

[Rrrr]

Update

GOOD NEWS: I had an amazing week. I was able to do much more than usual and go out a lot more. It is just shocking to get your life back for a bit, isn't it? I've been in utter amazement all week at the fact that it does not take a huge act of will power to simply lift my arms over my head to wash my hair, or bend down to pick up something that I dropped. This week, these little acts, which usually take everything out of me, have been EASY! Wow! I even went on a 10 minute walk yesterday. Maybe that was too much!?

I have been building up on the gamma globulin, and on Wednesday I did 7/10th of 1 gram of gamma globulin, which is 7 mL of Gamunex-C. The next day I was more wiped out than usual. But I was still able to go out. The next day after that, I was fine.

Then last night, Friday, I did a whole gram of gamma globulin, i.e. 10 mL of Gamunex-C. The result: I am almost bedridden today, Saturday. Yes, this could be from the 10 minute walk, of course. But I have a feeling it was the 1 gram of gamma globulin (i.e. 10 mL of Gamunex-C), because I had a similar exhaustion after the 7 mL on Wednesday.

So to summarize, at this point in time I think I can't do that high an amount. I seem to do best with micro-micro dosing of about 3-4 mL shots per night. So I'll go back to doing that. Maybe I'll try 5 mL per night.

Also, I am still finding that doing a coffee enema soon after a shot, either that day or the next day, is continuing to help me, almost instantly after the enema, for whatever reason. As I mentioned in an earlier post, coffee enemas are all about flushing out toxins from the liver and helping the body to produce glutathione. So maybe that is what is happening.

Rrrr

 

[Seven7]

@Rrrr If you want to start exercising start w not all at one time, do whatever feels right based on your AT then lay down, then walk again, then lay down. Since my AT is 115 I can walk for 5min then lay down, so I can do 5+5+5 (bit that would be too much based on your posts try 1+1+1. every 2 weeks add a set. so 1+1+1+1......

You will have more progress that way and less PEM that all the walk at once.

 

[Rrrr]

@Rrrr If you want to start exercising start w not all at one time, do whatever feels right based on your AT then lay down, then walk again, then lay down. Since my AT is 115 I can walk for 5min then lay down, so I can do 5+5+5 (bit that would be too much based on your posts try 1+1+1. every 2 weeks add a set. so 1+1+1+1......

@inester7, You will have more progress that way and less PEM that all the walk at once.

how do i calculate my AT? (and what does it stand for again? something "threshold")

do you wear a heart rate monitor while you walk?

thanks!

 

[boohealth]

If you were to do 10 ml a day that would be 30 g a month--that's a fairly high dose. People without CFS or sensitivities can do 20-40 g a month, usually infused in big doses, of course, but it does last about 3 weeks. I only do 5 g a month because it's out of pocket. I did best on 10 g a month when I could afford it. 2.5 g weekly. So since you're doing it daily, even 1/2 g daily is 15 g a month. You really may not need that much.

 

[Ema]

If you were to do 10 ml a day that would be 30 g a month--that's a fairly high dose. People without CFS or sensitivities can do 20-40 g a month, usually infused in big doses, of course, but it does last about 3 weeks. I only do 5 g a month because it's out of pocket. I did best on 10 g a month when I could afford it. 2.5 g weekly. So since you're doing it daily, even 1/2 g daily is 15 g a month. You really may not need that much.

It depends on the strength - the above refers to 10% but Hizentra is 20%.

I am doing best on 10g of Hizentra per week which is 50 mL. This keeps my IgG levels at the top of the range.

Infusing weekly (or even more than once a week) prevents peaks and troughs in IgG levels as well that seem to contribute to side effects.

 

[Rrrr]

I have been pretty sick for 2 days since i did the 10 ml (which is 1 gram) in one sitting. So once I get back to baseline, I'll do just 2-4 ml per day, and see how I do.

 

[Rrrr]

update: since i did the full 1 gram of gg, 1 wk ago, i've been pretty darn sick. it is clear that i need to stick to tiny doses and keep away from 1 full gram shots.

i did do a tiny dose the other day, but it was clearly too soon, as i've been very sick since then. i think i just had not yet gotten over the bad effects of the full 1 gram of gg that i had done a week ago now. so i was still dealing with the bad effects from that, and then on top of it i did an additional tiny dose (1/3rd of a gram). dumb move!

so in other words, i've crashed pretty hard.

 

[boohealth]

Remember, the antibodies last for 3 weeks. Even if you take a 3 week break, it might be perfectly okay.

 

[Daffodil]

i have been doing some googling and am finding that IVIG really deserves some thought, if i can afford it. i haven't been tested for low IgG in several years. i was normal the last time.

i have read of a few cases of people recovering after IVIG and apparently, one person who relapsed after rocephin (like me), was "cured" after rocephin + IVIG.

at 2 grams a week for 6 months, i think it would cost me $1800 to get it from India...but would probably have to go there and find someone to prescribe. i looked at the price at Novartis India.

 

[Daffodil]

some websites quote dr. burrascano as saying that IVIG is key to recovery in late stage lyme. however, other websites quote him as saying that it is indicated only when the patient has low IgG....if I remember correctly....

since rocephin helped me so much, maybe I should consider myself a lyme patient now, although there is really no difference according to KDM (and I think I agree)