Gamma globulin

[Helen]

@justy , there is information on the Internet about the content of Gammanorm and side effects. Here is one link
http://www.mydr.com.au/medicines/cmis/gammanorm-solution-for-injection I found the same information for doctors in my country, but it wouldn´t be readable ;-).

 

[SOC]

I'm not sure if can easily get another brand...

I'd be surprised if you can't. Apparently it's not at all unusual for people to react to one brand but not another. Changing brands because of side effects is a normal step in the process of finding the right GG treatment, from what I've seen.

 

[justy]

I'd be surprised if you can't. Apparently it's not at all unusual for people to react to one brand but not another. Changing brands because of side effects is a normal step in the process of finding the right GG treatment, from what I've seen.

yes I have read about this - the problem is my Dr always uses this brand. I will ask anyway. Also I have £400 worth of it in my fridge and cant really afford to throw it away and buy more right now I have no more money for treatment...

 

[AndyPandy]

Thinking of you @justy. Hope you can find a way through this.

Best wishes Andy.

 

[justy]

So since stopping the injections due to a very severe worsening in my condition I have not got ny better - in fact my functioning is worse then ever. I am now in bed all day in terrible pain all over - flu like aching mainly and small join pain and an excruciating headache and brain fog and head pressure.

Called my GP this morning for advice and spoke to a receptionist but no call back as yet. Supposed to be travelling to see my M.E dr next week but don't think I can manage the journey - scared I will get more il. I cant see how this situation of mine will ever end. everything I have ever tried, apart from the IV GlUT AND VITAMINS, has made me permanently worse, and I have insane reactions to the tineiest amount of drugs. I wondered of I had aseptic meningitis, even from such a small dose? After all I only need 500mcg of valium to calm nevres and help me sleep, 5mg of prednisolone gives me steroid psychosis and one dose of doxycycline caused MCAS!

Have also had inner vibrating feeling back and foot pain - could it be waking up the bart etc? in which case what now - surely we need to kill it. but quite honestly when yu are this sick you cant imagine making it worse....only just hanging in there today.

 

[Hanna]

So sorry to read your post Justy ! Hope you'll manage to find something to ease your situation.

 

[maryb]

@justy
so sorry to hear you feel so bad. Its really very unlikely that you have aseptic meningitis , I'm sure your GP will reassure you on that. It takes so much time for us to recover from reactions, look at all the past ones you've had. I too take a fraction of the dose prescribed for any drug, we're both just very very sensitive.

Rest and more rest will help give your body the strength to try to mount a fight against the infections, even if it can't overcome them. Have you e-mailed the clinic to see what KdM thinks? Hope you feel better as the day goes on.

 

[justy]

@justy
so sorry to hear you feel so bad. Its really very unlikely that you have aseptic meningitis , I'm sure your GP will reassure you on that. It takes so much time for us to recover from reactions, look at all the past ones you've had. I too take a fraction of the dose prescribed for any drug, we're both just very very sensitive.

Rest and more rest will help give your body the strength to try to mount a fight against the infections, even if it can't overcome them. Have you e-mailed the clinic to see what KdM thinks? Hope you feel better as the day goes on.

yes have mailed the clinic, but predictably no response.

 

[minkeygirl]

@justy I have had that "inner vibrating" feeling for about 2 weeks now. I called it jitters, It's mostly in my diaphram. I'm trying to figure out what it is. Someone suggested low cortisol gives her the jitters so I added more B5.

I had none yesterday, after stopping Famvir (test) but back early today after a dose of CBD oil.

When I didn't have it yesterday, I realized how exhausting it is.

I bought some Seriphos which I'm waiting for and some NAG which is part of Hips anxiety protocol . I'm trying anything.

If you want I can let you know if I hit on anything.

The other night I went to pee and when I sat down I broke down and sobbed. It's all too much sometimes.

 

[justy]

The other night I went to pee and when I sat down I broke down and sobbed. It's all too much sometimes.

I was going to 'like' your post to acknowledge I had read it, but can't like this. Felt exactly the same all day today - so rubbish, so sorry.

 

[minkeygirl]

Yes. Rubbish, crap, garbage, Sh*t. Etc

 

[susank]

Ugh - I want to stop my Gamunex. Of course it is difficult to tell the difference between symptoms of Lyme and Bart and side effects from Gamma. I am not taking antibiotics. Sometimes I feel better on Abx - but lately worse on them. Seems I feel worse on everything I try past years. Previously I handled everything pretty well - felt better.

I have CVID so Gamma replacement is a "must do". Earlier this month I took ten days off - no infusions.
I did not think I felt any better off Gamma - so started back - plus wanted to be tanked up on antibodies going into winter. So I got scared about getting sick and infused two grams over about four days. Now I am in severe pain everywhere - fatigued - brain fog - just awful. How can this be? Such low doses?

I will never understand this antibody stuff. Why cause so much havoc for so many people? Of course others report feeling great on it - IVIG - and can feel when it wears off and they are ready to be tanked up again.

It is said the IGG antibodies "life" is about three weeks in the body. Or maybe that is "half life". ???
I am remembering when I did IVIG regularly - 20 grams every three weeks - gradually my trough level would increase. Meaning that antibodies stay in the body more than three weeks.

Whatever - I wish I could wash them out of my body and see how I feel. Ugh - I hate this.

FWIW I just order some bovine colostrum to try as an alternative. Of course it will probably make me sick.

What is a CVID'er to do when Gamma replacement not tolerated? IV Vit. C?

 

[AndyPandy]

Thinking of you @justy

 

[justy]

wanted to be tanked up on antibodies going into winter. So I got scared about getting sick and infused two grams over about four days. Now I am in severe pain everywhere - fatigued - brain fog - just awful. How can this be? Such low doses?

I will never understand this antibody stuff. Why cause so much havoc for so many people? Of course others report feeling great on it - IVIG - and can feel when it wears off and they are ready to be tanked up again.

It is said the IGG antibodies "life" is about three weeks in the body. Or maybe that is "half life". ???
I am remembering when I did IVIG regularly - 20 grams every three weeks - gradually my trough level would increase. Meaning that antibodies stay in the body more than three weeks.

yes I also wanted to make sure I was taking it over winter - have a tendency to lung infections etc sp thought it would be a good thing (but I don't have cvid). The way you describe how you felt - severe pain everywhere, fatigued, brain fog, is exactly how I have been feeling for the past two weeks since I took the GG, and I only took tiny micro doses. I also have Lyme and Bart and the soles of my feet have been a little painful also - is that the infections waking up?

I read yesterday the half life is 21 days, so that explains why in the summer when I had a loading dose (sub q) I felt dizzy for three weeks before it started easing off - I just hope this eases off this time. I can honestly say I have not felt good at all on GG, just more sick and awful than ever. Yesterday was in so much body wide aching pain I just wanted to end it...took some pain killers which didn't touch the pain, just made my mast cells play up and was itching all night alongside the misery of the pain.

I don't understand why we feel so bad - is it a herx? is it the immune system waking up and the infections going hello im am here? or is it just good old fashioned side effects? If I cant tell the difference then how can I push through? honestly the two treatments I have tried for the Lyme and co that stirred things up, also made me so ill I was suicidal - how can you put yourself through that? people tell me it gets worse before it gets better, but what if I just stay permanently worse?

I'm sure Bart is a BIG problem for me - Rifampicin kicked me so hard I was borderline psychotic and telling people I was going to kill myself and the scariest part is that I don't remember this - my husband told the Dr this had happened and I didn't even know! urrggghhhh now so sick I cant get to visit my M.E Dr to discuss it all!

Forgot to say - hang in there - it should wear off for both of us eventually. xx

 

[susank]

Justy - yeah - I meant to say we just need to hang in there. One of the points of my a.m. post was that if we are reacting to the antibodies - then we may have more than three weeks to deal with that.
Is it an antibody meets antigen war? Somehow the sicker we are with some kind of infection gives the antibodies something to battle with? Maybe the folks that do fine with Gamma don't have underlying health issues?
I know I have highish titers (antigens?) to many of the antibodies that are in Gamma.

In my case FWIW I first started on IVIG about the same time I was Dx'd with Lyme and Bart.
Maybe - just maybe - my bacterial load was less then? Over the years I have more "bugs" in me - so tolerate Abx and Gamma less well? Dunno - because I took Abx - then stopped - started again etc - did I create more bugs"?
It feels like it. (Abx causes Bb to go into cyst form - they multiply in cyst form? - making more in the body? released when Abx stopped ).

I am also wondering if frequent low doses SubQ somehow "irritates" us? Our body sees the Gamma - that perhaps it does not like - too often?

Vs. - Higher doses IV - every three to four weeks. Flood the body with antibodies - that en masse "neutralize" antigens - feel awful a few days - then better after the short war is over?

Thinking about this - Gamma replacement - it's main "job" is to protect us from infection.

It is however also supposed to neutralize bacteria from infections we might have.

Dunno - maybe the low dose SubQ just "nags" at the infections.

Maybe - again maybe - we could look at Gamma like we would an antibiotic. Take a large dose and neutralize antigens - lots of them - when they hit the bloodstream. There is a finite number of Gamma antibodies in the doses - do they go "poof" after neutralizing an antigen? Ugh - my brain hurts - trying to think and explain a crazy idea. If there were 100,000 antibodies in a vial (20 grams?) (made up of EBV., Cpn, Strep etc). and they latched on to 100,000 antigens - the antibodies would be "spent" - themselves neutralized? - and we might have a week or two to feel better - until the next high dose? Perhaps the antigen level declining over time?

Antigen level declining being helped with Abx/antivirals?

Sorry - this sounds nuts. Thinking out loud here. Perhaps for SubQ higher and less frequent doses might be better????

 

[SOC]

Wondering about why some people are struggling so much with GG while others, like me, are not.... There's probably 1000 reasons why we'd respond differently and I'll never think of 995 of them, of course. The one I'm currently wondering about is pathogen load, as mentioned in posts above. I didn't get IVIG until I had years of AVs, abx, Equilibrant, etc, etc behind me. Maybe if I'd been able to get IVIG early on, before I reduced my pathogen load, I'd be miserable on IVIG too. I did have a major IRIS-like rxn on Valcyte, which was my first major pathogen treatment. Maybe if I'd had IVIG first, I'd have had a rough time with that. Who knows? Nobody, I think.

Truth is, doctors have knowledge of GG from working with uncomplicated () CVID, but they don't have much experience with immune dysfunction compounded by ME. That may make it hard to predict how any individual among us is going to respond, or to explain some of the responses we're seeing. We know so very little about ME.

 

[justy]

Yes I feel fairly certain that I could be 'stirring' things up. I've not been able to tolerate any antibiotics f herbs for killing and when I try have massive crazy reactions - I'm imagining my bacterial loads etc. are high.

Also saw some stuff about low IGA causing issues if the brand you use has IGA in - Gammanorm does and it says not to use of you have low IGA - i have no idea what my level is...

The IV Glut and vitamins REALLY helped a lot, I think by detoxing debris that had been building up? but now its war again in my body...I'm not sure I could continue with the GG I have in the fridge without wanting to top myself.

My last dose was on the 8th October - only 1.5ml of Gammanorm (165 mcg per ml) so a really tiny dose, 14 days later I only just feel like the pain is subsiding to bearable levels. The fatigue is declining but only if I do nothing at all. Last night I had a shower and washed my hair and this morning I put some washing in the machine, had some breakfast then had to go back to bed, so some very slow progress.

Supposed to be going to Brussels on Sunday to see my Dr, but really scared about the trip = 10 hour drive (obviously im not driving). Is it worth going to discuss this all and next plans whatever the cost to my health or is it too soon after being so very ill? I feel like it could take me months to recuperate from this and am worried about permanently damaging myself, but on the other hand if I don't go I wont be seeing him until the spring.

 

[SOC]

Supposed to be going to Brussels on Sunday to see my Dr, but really scared about the trip = 10 hour drive (obviously im not driving). Is it worth going to discuss this all and next plans whatever the cost to my health or is it too soon after being so very ill?

I'd say, yes, it's worth going. If you don't go, you won't have a clue what's going on and you won't have your specialist's guidance on how to improve the situation. Waiting will just delay everything and you'll be miserable longer, imo.

Perhaps the best plan is to really work your travel arrangements to minimize the impact. Lay down (sleep if you can) in the car for the entire trip. Don't walk at all; have your companion push you in a wheelchair everywhere. Don't go out at all (except to the clinic). I like to think of it as "acting like luggage". I did most of my travel to specialists (minimum 7 hr trips, often more) acting like luggage. Lay down in the car, get pushed into the hotel, don't leave the hotel room for anything except your appointment, and then still get pushed in the chair. Wear headphones with something you can stand to listen to if public sounds bother you. Wear sunglasses and keep your eyes closed if lights bother you. You feel nearly inanimate, so act nearly inanimate.

 

[justy]

@SOC - when you did this how severely affected were you? (if you don't mind saying)

You are right about all of this - I am going to try to go I think we will be breaking the journey up with 4 hours drive then stay one night at my mums (usually a bit stressful), then 5 hours from there to Brussels next day. then rest and apt the next day, then rest and all the way home next day, picking kids and dog up from my mum on the way...does this sound doable? will be just me and husband in ground floor apt - he will shop for food and cook - I can just stay in bed eat food and watch movies...could be OK?

 

[SOC]

@SOC - when you did this how severely affected were you? (if you don't mind saying)

You are right about all of this - I am going to try to go I think we will be breaking the journey up with 4 hours drive then stay one night at my mums (usually a bit stressful), then 5 hours from there to Brussels next day. then rest and apt the next day, then rest and all the way home next day, picking kids and dog up from my mum on the way...does this sound doable? will be just me and husband in ground floor apt - he will shop for food and cook - I can just stay in bed eat food and watch movies...could be OK?

I was bedbound, but able to get myself to the bathroom so not completely bedbound, when I first started traveling long distance to see an ME/CFS specialist. I probably made 6-8 car trips in that state before I was able to sit up for most of the trip. I "acted like luggage" when traveling until I was able to walk around a grocery store.

I won't pretend it was fun. I had to do even less than the little I could ordinarily do for weeks before and after each doctor visit. But I needed to do it if I was going to get better. And I did. I got much better, so it was well worth the effort. For me, the trick was to spend the absolute minimum energy I could on the trip, because just being in the car and the hotel and the doctor's office was more demanding than my typical day.

I'd say it could be okay if you're willing to swallow your pride (and your desire to meet others' expectations) and do NOTHING but survive the travel. If you can't go straight to bed at your mother's and stay in bed the whole time, then don't stop there. Don't be too proud to use a wheelchair to go from the car to a bathroom, or from the car to the hotel room. Don't be too proud to lay down (and sleep if you can) in the car for the entire trip. You are very, very sick. Act like it. Expect others to treat you like you are very, very sick. Don't pretend to be healthier than you are -- you will pay for it. This trip is an investment of your energy resources, don't waste those resources on the luxury of appearing "normal".