Gamma globulin

[Valentijn]

I had intense flu like feeling, joint pain, headache, fatigue and feeling hot - its usually worse the day after the injection - I thought this was classic Herx reaction.

I don't think you mentioned the fever before It's a pretty important part.

 

[justy]

Oh Justy, so sorry for you. I feel the frustration, everything we do seems to make us worse when all we're doing is trying so hard to get well. Sorry I don't have any answers, don't know much about GG. I'm sure the clinic will give you advice. All I would say is if you want to be well enough to travel, should you bother with another injection now? Are you having more IV's when you get there?

The thing is I stopped them for so long before to go on holiday and travel back from the clinic. Have only been back on them a couple of weeks...may have on this sunday, see how it goes...then a break before going to clinic maybe. All so frustrating - as per usual!

Am having just one IV vitamins and Glut when I go, on my own suggestion as I saw others doing this when I was there for longer. Then home the next day.

I have spent so much money on the GG, I don't want to waste it and I want ot get better. have spent so much money on Drs, travel etc it seems mad to then nt do what they say.

 

[justy]

I don't think you mentioned the fever before It's a pretty important part.

I didn't take my temperature, but I felt hot and clammy and my forehead felt hot, like when you have flu, but I also felt a bit shivery. Basically I feel like I have the flu, without the snotty nose or upset tummy.

Its only such TINY dose though - why oh why do I always react to EVERYHTING. Still on the bright side my MCAS seems to be accepting it - no increased itching. Yay!

 

[Wayne]

Yesterday was honestly the sickest I have ever felt apart from when I ahd pneumonia and flu.

Hi @justy

Thanks for giving us an update. I'm so sorry to hear how awful you've been feeling. :thumbdown:

One thing that always helps me when I'm in a similar state is to do coffee enemas until I feel better--which is usually almost immediately. But that's what works for me, it may not be the case for others. I've come to believe these CEs not only help me detox, but likely stimulate/harmonize my vagus nerve as well, which is the main communication line between the gut and the brain.

If that communication line is stressed, then I think it can lead to some pretty major feelings of discombobulation. Perhaps that's part of what you're dealing with. One way I've been able to get relief from that major discombobulation is to put an ice pack at the base of my skull (where the vagus nerve exits the brain). I put a towel over the ice pack, so it gradually gets my neck cold and is not a shock to my system.

Just a thought for now. I hope you can find a way to make your way through this. Thanks again for checking in and letting us know what you're going through. Wishing you the very, very, very best...

 

[justy]

Thanks @Wayne -really touched by your kind words and suggestions. the old CE keeps coming up so maybe I need to give in and give it a go.

 

[sillysocks84]

Thanks @Wayne -really touched by your kind words and suggestions. the old CE keeps coming up so maybe I need to give in and give it a go.

I'm sorry to ask, but I don't want to go back and read the whole thread, what is "CE"?

 

[Daffodil]

@justy ..so great to hear that small doses of GG are being tolerated by your body!...i am past the 3 yr mark of KDM's treatment and about 30 - 35% better (except for this pesky chest pain)..maybe even 40% sometimes.......but it took a long time....so hang in there! remember..it works, no matter what you are feeling at the time.

maybe using a pump would help the dizziness? if you do want to try one, i can loan you mine...i just finished my GG injections for the time being.

xoxo

 

[Ema]

I'm sorry to ask, but I don't want to go back and read the whole thread, what is "CE"?

Coffee enema

 

[sillysocks84]

Thank you, Ema.

 

[justy]

@Daffodil - Thank you. My immune system is tolerating them but they are making me feel absolutely bloody awful...feverish, myalgia, joint pain all over my body. Im only doing 1ml at a time so a pump probably wouldn't make much difference. Perhaps ill try the slow hand push slower on sunday - how long do you recommend doing timewise to inject it?

May also consider a break to go for apt at the end of the month. I currently cant function out of bed at all really.

before this I was doing so well. BUT daff you have given me some hope, and I know you have been through it at times too - thank you for the hope and to keep faith in my Dr.

 

[Rrrr]

Hi @justy

One thing that always helps me when I'm in a similar state is to do coffee enemas until I feel better--which is usually almost immediately. But that's what works for me, it may not be the case for others. I've come to believe these CEs not only help me detox, but likely stimulate/harmonize my vagus nerve as well, which is the main communication line between the gut and the brain.

If that communication line is stressed, then I think it can lead to some pretty major feelings of discombobulation. Perhaps that's part of what you're dealing with. One way I've been able to get relief from that major discombobulation is to put an ice pack at the base of my skull (where the vagus nerve exits the brain). I put a towel over the ice pack, so it gradually gets my neck cold and is not a shock to my system.

OMG, this coffee enema and vagus nerve theory makes so much sense, Wayne!

 

[sillysocks84]

@Wayne interesting about CE stimulating vagus nerve. The vagus nerve controls b cells to a smaller degree than rituximab...

Question: Do CEs speed HR up? I cannot drink anything caffeine because of my pots, do enemas bypass that response?

 

[Daffodil]

@justy ..oops forgot its only 1 ml ...then a pump would not be needed - at least, i dont think so. i would do it maybe over 10 min? since youre sensitive to it...but i am just guessing.

i remember thinking the hard part was over only recently ....it was everyday, several times a day sometimes, that i doubted the treatment...that i felt it was hopeless....but eventually, i could not deny the improvement on paper....my CD4 count, for example, was 900 recently (i use that since the test is free and available here). that is a big improvement for me. still have a very long way to go, though. some days still feel very bad.

since you were doing well before this, thats another good sign i would say. something is being impacted in there! drink plenty of water and hang on for the long haul!

xoxoxoxo

 

[susank]

@justy - sorry you are feeling so bad - but glad you posted an update.
I also have Lyme and Bart. I also feel dreadful and don't know from what. You can attribute your dreadful feeling to the Gamma? As opposed to the dreadful feeling from CFS, Lyme and Bart? I have tried a few things past months and feel that I negatively react to them. The only constant has been my Gamma infusions. I am thinking about not infusing for a month and see how I feel. I think the Gamma does weird things to me - makes me feel real "off". Pain, fatigue, apathy, perhaps worsening of dry eyes and mouth. Mostly though in my head. Head pressure and extreme brain fog. It's either from the Gamma - or not - and I need to know. I can't live this way if a med is making me worse. I have the immune deficiency CVID - so Gamma is a must do. But if I have to stop it I will. I am on very low dose - only ten grams per month - but even that seems too much. When I first started getting Gamma I got it IVIG and did pretty well that way. Dunno - maybe SubQ and smaller/more frequent administration my body does not like. Or maybe my body is saying no to everything now.

To mention - even though injecting SubQ - small amounts - push it in very slowly. It is not really a rapid push. It's a slow push. For one ml I would not even bother with a butterfly needle. Do what the nurse did - with a needle and syringe - like a B12 shot - SubQ. FWIW - some of the Gamma is left/wasted in the BF tubing.
More if using 12" tubing - less if using half that length. Maybe 1/2 - 3/4 ml? That is avoided - wasting - by using a regular needle and syringe. For larger amounts - BF's are definitely the way to go.

 

[Rrrr]

An update on my sub q gamma globulin injections.

I had to have a break for a while as the last shot - 3ml rapid push sub q left me unable to stand due to dizziness for three weeks and so sick...

So I started up again a couple of weeks ago at super low micro dose 1ml (165mg ml) x twice weekly, using a butterfly needle, tubing and a slow hand push. That was sort of ok - still felt nasty afterwards. The next week I upped it to 1.5 ml and same method for sub q injection and I have had a massive crash. Am so ill. I feel like I have the most intense flu of all time - all my joints and muscles hurt like hell, especially my small joints - fingers, toes, anlkles and wrists. I have a killer headache that goes on and on and I have the worst brain fog I have ever experienced.

I wonder if the even tiny dose could cause a herx? (I have Lyme and Bart) as after the first couple of doses I had burning foot pain as well...is it waking up my immune system or boosting it which is allowing the infections to come out more? or it could just be side effects...

I was told inititally this would wear off after a few shots, but if anything it is getting worse. Such a horrible thing to deal with after feeling so much more functional for the past two months after the glutathione and vitamin ivs a I did. Now back to mainly bedbound, unable to do much - feeling low and afraid to take more, but on the other hand wanting to push on if this is just normal or the Lyme reacting or something.

I have written to my Dr, and I also see them again in 3 weeks (if im well enough to travel)...Yesterday was honestly the sickest I have ever felt apart from when I ahd pneumonia and flu.

@justy I posted this yesterday, but for some reason it did not go thru. So I am re-posting today:

In the end, after a few months of trying gamma globulin shots (via subq injection in my tummy fat, with an insulin syringe), THIS above description from @justy is why I stopped. In short, each tiny micro dose I did, resulted in me feeling sicker for a few days. It was just too hard. When this started to happen, I dropped the dose down to 1/10th of a cc (yes, that small!) and cut down how often I did the shots to maybe once a week. Even with that, I continued to felt sicker for a few days after each shot. In the end, I stopped doing the shots, or, rather, I do them very rarely. I think I should re-start up, and try again, but I'm really sick now, so not sure I should.

 

[justy]

@Rrrr @susank - I have heard of other M.E patients doing badly with GG and feeling much worse - my doc tor told me the awful feeling should wear off after 3 shots, but it hasn't - if anything it is getting worse with each shot. I wonder why it affects us like this?

I definitely KNOW it was the GG shots that made me feel worse, not the Lyme Bart (although of course they could be causing a Lyme Bart herx? as I was doing very well after 6 weeks of iv glutathione and vitamin infusions twice weekly. My functioning improved on these quite a lot and for a couple of months after until I got going with the GG shots.

The first shot the nurse did a rapid push of 3ml in one go sub q and I couldn't stand up for 3 weeks I was so ill. Three days after having the shot I am feeling a little better - the flu feeling has eased, but I haven't got back to the baseline I was at before starting them...

I will ask my Dr some more about all this when I see him. The other news was that the Dr and the pharmacist confirmed I could use the same vial multiple times, not just once, which is good because its so expensive.

I use the butterfly needle with a short tube and lose 0.6ml each time because when I get up to 3,l I don't want to be holding a needle with my hand and injecting over 10 - 15 minutes its too stressful. The butterfly needles are so easy to use and I'm not losing much GG and can push slowly the 1.5ml over 10 minutes - still feel awful after though.

Most times the really awful feeling doesn't come until the second day but the 'head pressure and extreme brain fog that susank mentions is exactly what happens to me - its really oppressive.

But I'm wondering if we are stirring up the infections with this - especially the Bart which in my opinion is a nasty thing to have. When I tired Rifampicin to kill it it made me go completely nuts - I thought I was going to kill myself after the second day the head feelings and the depersonalisation and derealisation was so severe I couldn't quite relate to reality - I was absolutely terrified and my GP told me to stop. I think my brain is really messed up from the Bart.

 

[Helen]

push it in very slowly

Susank, may I ask where you inject the GG?

 

[SOC]

I have heard of other M.E patients doing badly with GG and feeling much worse - my doc tor told me the awful feeling should wear off after 3 shots, but it hasn't - if anything it is getting worse with each shot. I wonder why it affects us like this?

Have you thought about whether the injectable product has a preservative that you might be reacting to? Maybe it would be worth trying a different brand...?

Not saying you couldn't just be having a bad rxn to the GG. I'm sure that's quite possible. Just running an idea by you.

 

[susank]

I infuse tops of my thighs.

Sometimes folks have to change brands. I started on Gammagard and switched to Gamunex.
I have not tried other brands - might need to try a different one.

For those that have been on GG - and have had side effects - went off of it - did you eventually get back to baseline? If yes - how long did that take?

 

[justy]

Have you thought about whether the injectable product has a preservative that you might be reacting to? Maybe it would be worth trying a different brand...?

Not saying you couldn't just be having a bad rxn to the GG. I'm sure that's quite possible. Just running an idea by you.

Yes this is on the list to ask the Dr about when I go in 2 weeks. I'm not sure if can easily get another brand, but am going to ask to try - thanks for reminding me!