Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rrrr, Feb 18, 2014.
no worries about hijacking! but i have no idea about your question. sorry!
I understand! I do.
@Ninjas @Ema may know the answer.
@Rrrr I thought about not doing it. I mean, I'm older and how much better can I got even with a long and difficult treatment? But I have to try.
Once I get a DX then I can go from there.
Hmmm I looked at Gammagard and it also has glycine as its inactive ingredient. May have switched since I first tried it. I am not sure why you're reacting to very small amounts, though.
so if GammaGARD has glycine (which you think is good) in it, then likely Hizentra does too. but some folks do better on Hizentra than they do on GammaGARD, and vice versa. so who knows. but at any rate, i'm going to try the product you said you do better on. or at least i hope. waiting to see if insurance covers it.
@Rrrr @minkeygirl and @Ema Thanks! I went on to do some more reading and have gotten further clarification: not all immunoglobulins are gamma globulins and vice versa: not all gamma globulins are immunoglobulins. I was hoping to kill two birds with one stone.. but really, when does that ever work out with this stuff?
@Ninjas You're ahead of me. My brain just can't get this stuff. If and when the time comes that I need it, I'll be back asking questions.
I like gamunex by far but I haven't tried anything else in many years, so it looks like they may have some imitators now? I like it anyway for the filtering process.
Hi Everyone, I have been trying to get help with my immune system for many years now and I would like to ask if someone can point me in the right direction.
When last tested my IgG was 531, IgA was 102, IgM was 647. I did a pneumonia vaccine test and on the first check I did not respond adequately for all 14 antibodies. I was given a second vaccination and did not respond for 9 of 14 antibodies. I have tested positive for mycoplasma and parvo in the past.
Unlike others here, I catch colds and flu so easily that I have had to become a recluse from October to May. I go to the grocery store around midnight once a week, midweek, and that's it. No socializing, no Thanksgiving or Christmas dinner and I still catch a number of colds each year, which wipe me out for a week or two and can turn into sinus infections. I go out in public and see people in the summertime, but I catch colds a few times each summer.
I have been to see several immunologists and tried to get IVIG, but they just blow me off. I have taken every herbal and glandular immune booster I could find, without any benefit. Wearing a surgical mask doesn't help. So does anyone have any suggestions? I have already thought of just shooting myself
Thanks in advance,
Ask them at the Primary Immune foundation for a physician referral.
Thanks Ema. I'll check that site out.
== Update from the person who started this thread ==
After some really bad weeks, in which I think I did too much gamma globulin (even though I never did more than 1 gram per week!), I am now doing better. I took a 2.5 week break from the gamma globulin and also went OFF my antivirals.
As a result, I have had some really good days in the last week! I was able to vacuum for about 30 minutes one day (amazing for me!), with no PEM the next day. And then go on a slow 5-10 min walk the following day, which is huge for me. I did have PEM the next day after the walk.
But it is clear that something is helping me. I have started doing a few other things, so I'm not sure what is helping me, but I think it could be the Gamma Globulin.
Other things I started/stopped:
1. re-started fish oil (to help the absolutely horrific brain fog it got from doing too much gamma globulin)
2. upped the UltraClear (liver detoxifier)
3. coffee enemas (liver detoxifier)
4. re-started colostrum (to boost immune system)
5. I also went *off* the antivirals (famvir) I was on for 10 months
I'll be switching to the Gammunex-C brand this week, as I heard it is better filtered than the other gamma globulin products (true? Not sure.). Like the GammaGARD brand, a single 10 ml bottle of Gammunex-C is 1 gram of gamma globulin. (Whereas the Hizentra brand is 1 gram in just a 5 ml bottle, so Hizentra is a thicker solution.) I'll do about 1/3 gram of gamma globulin via Gammunex-C each week. At least to start with. Again, I found that if I did too much more than that, I got much sicker and very very bad brain problems.
Happy to see an update, @Rrrr! I was wondering about you...
What are you doing with the excess in each bottle? Have they allowed you to re-use a vial or are you having to discard the excess?
FWIW, I doubt the "better filtered" part. I think they are all *very* filtered to the best that we are technologically able.
@Ema -- it is so very sad, but i have to throw out the excess in each bottle that i don't use. that is because it has to be used within a few hours. how sad, as it is such a waste!!!
also, i just spoke to someone at Acreedo Pharmacy. i was asking about the different detergents each gamma globulin brand uses, wondering which would be best for someone like me, who is hyper sensitive to chemicals. and i was told via email that the Gamunex-C brand does *not* use detergent (GammaGARD does use detergent). so i wonder if i'll do better on the Gamunex-C brand, which i start doing at home this week.
this (below) was the info i was sent. i am not sure what it all means, but the subject line seems to sum it up:
Subject line: Method of IG production -- Gamunex does not use detergent treatment
-cloth & depth filtration
-final container low PH incubation
-35 nm nanofiltration
- low PH/elevated temperature incubation
See this GREAT chart, updated March 2013:
"Characteristics of immune globulin products used to treat Primary Immunodeficiency Diseases"
As you can see, under Gamanex's "Method of Production" it does not list a detergent/solvent, as many of the others do. This is very good news for those of us who are hyper sensitive (like me).
I thought you were referring to the purity of the product in general. And in that respect, I would say that they are all similarly pure (as in virus free) to the best of our technological abilities at this time.
It looks like the caprylate method is a newer one and is faster and more efficient at removing viruses with less waste than the solvent/detergent method.
So while I don't disagree that people sometimes do better and have fewer reactions for any one reason or another with IgG products, I just have to wonder how much solvent/detergent residue is left after the nano filtration step (answer is less than one ppm; see reference)...and isn't it conceivably possible to be sensitive to caprylate as well?
It doesn't matter to me what product works best for any one individual. I just don't think it's fair to say one is better for *everyone* than another because of the filtration method overall.
@Ema, i hear you. i guess i was responding to some other patient's posts somewhere where they said that the detergents messed them up. being so chemically sensitive, i could see that happening to me, too. but who knows.
anyway, it is clear from that chart that also Hizentra does not have detergents in it.
I'm glad you brought it up, actually. I learned a lot about the different methods of purification from reading about it yesterday and found it all quite interesting.
I am looking forward to the synthetic IgG becoming available. That will put all the worry about human contamination to rest and hopefully bring the cost down as well since it will not have to be harvested anymore. Let's keep our fingers crossed that those trials move briskly and smoothly.
I had read that the caprylate patented filtering process removes down to prion level--thus better filtering.
They all include a prion reduction filtering step no matter the method.
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