Gamma globulin

[AndyPandy]

Hi @susank. I don't have any suggestions for you, but understand the feeling of dying by inches.

Just wanted to let you know that I am thinking of you and sending you love and encouragement.

Best wishes

Andy

 

[deleder2k]

If you are having problems with side effects from the GG - could intramuscular injections be something to consider? Side effects are said to be minor compared to IV.

 

[susank]

Hi - just wanted to check in. I can't believe it has been so long since I have posted. How are you all doing on the Gamma infusions? Rrrrr? Daf? Better?

I am still infusing SubQ. Best, Susan

 

[maryb]

Noticed this thread and thought it may help @justy haven't read it through so apologies if its not about IVIG.
@Rrrr @Daffodil

 

[justy]

Noticed this thread and thought it may help @justy haven't read it through so apologies if its not about IVIG.
@Rrrr @Daffodil

Thanks, yes have read it. Am hoping to get some ivig through breakspear, but have to wait till end of feb for first appointment - that should give me plenty of time to recuperate and rest enough after the Brussels debacle to get there safely...

 

[Daffodil]

i am now wondering if i should try to get the 10 mg IVIG from Brussels and do it for 6 months, instead of the 1 gram i have been doing. I have 1 week left of that. I just don't know what kind of financial hardship it would cause my mom to come up with that amount of money right now, plus trip expenses, tests, and doctor's fees (the doctor says he would like to see me soon for tests). I just wish I knew if the IVIG would help THAT much. I did read that Burrascano said that it is necessary for "chronic Lyme"....

 

[Ema]

I've just gotten back up to almost my full dose after about 9 months off due to insurance issues and then Valium issues. It's really too soon to say but I'm definitely improving again and I couldn't say that for many months. I pray it continues!

For me, smaller doses don't seem to do much. Both times I've noticed improvements, I've been on 8-12g a week. I'm sure it is different for everyone though that has been my experience.

 

[readyforlife]

Dr. Peterson put me on ivig, Gamunex-C 10GM every two weeks. A nurse comes to my house and gives me the IV. I have had three rounds and my next one is on December 8th. Dr. Peterson wants me on it for 6 months.

This thread is to long for me to focus on and read. so my question is has anyone been on Gamunex-C and for how long?

 

[melamine]

If you are still looking, here are my numbers:

2014 / 2013
IgG 751 / 813 (N = 700 - 1600)
IgA 123 / 117 (N = 70 - 400)
IgM 433 / 391 (N = 40 - 230)

The last time IgG subclasses were ordered was 2011:
IgG1 297 (382 - 929)
IgG3 27 (22 - 178)
IgG 2 and 4 were within normal

C3 has been below normal and C4 was also for awhile, but then low-normal.
IgG1 was also below normal the year before this test and IgG3 had been slightly below normal that year also.

After doctors ignored these labs and I brought it to their attention and started asking questions about them relative to my symptoms and history, they stopped ordering subclasses. When my primary doctor referred me to a University immunologist, he did not even order subclasses.

 

[susank]

Daf - sorry has been so long. What have I missed? You are thinking about IVIG? 10 grams a month?. In Brussels? As in Belgium? Vs. somewhere in the US?
How many SubQ infusions have you done by now? Do you feel better or worse? Best, Sus

 

[Daffodil]

Daf - sorry has been so long. What have I missed? You are thinking about IVIG? 10 grams a month?. In Brussels? As in Belgium? Vs. somewhere in the US?
How many SubQ infusions have you done by now? Do you feel better or worse? Best, Sus

Hi Susan I have done only 4 grams a month so far, for 6 months. That was all I could afford and I do not think it helped much but who knows what is happening in the body?

In a couple of months, in Brussels, I will get more from KDM because it is cheaper. I will do 10 grams for another 6 months. I think that is all I will be able to afford; still a small amount, but maybe it will do something. I will only be able to take it subcutaneously.

I am currently on Ceftin and Clarithromycin and I feel it is helping my brain fog, which is the best thing I could have hoped for. I have a feeling it is mostly the Clarithromycin that is helping but I cannot know for sure. I still have a lot of fog, but the throbbing is less. Today, I went out to buy groceries and was able to remember everything I had to buy without looking at my list, which is very unusual for me.

I am supposed to be taking Samento too, but even 1/2 drop makes me sleep all day and I am not able to do anything to take care of myself, so I have stopped it for the time being.

Sorry I do not remember most of this thread so I am only giving an update.

xoxoxo

 

[Daffodil]

hi all. headed to Brussels in 8 days. will get gammanorm and bring it back. 10 g a month is what kdm wants me to do.

right now, doing very very poorly. sleeping most of the day. depression is very bad. lymph node aching but always less since the rocephin a year ago. not feeling too hopeful but trying to keep head above water.

not sure why I am continuing...feel like I am just spinning wheels again

sorry to leave a depressing post. everytime I think I am going to improve this time for real, it never happens. ugh

 

[heapsreal]

hi all. headed to Brussels in 8 days. will get gammanorm and bring it back. 10 g a month is what kdm wants me to do.

right now, doing very very poorly. sleeping most of the day. depression is very bad. lymph node aching but always less since the rocephin a year ago. not feeling too hopeful but trying to keep head above water.

not sure why I am continuing...feel like I am just spinning wheels again

sorry to leave a depressing post. everytime I think I am going to improve this time for real, it never happens. ugh

Any thoughts of going back on rocephin abit longer? It seems many drop off abit after stopping rocephin treatment.

 

[Daffodil]

hi heap. the thing is....it was SO hard on my body that I had to stop it early. and the improvements don't last....

hope you are still doing well

xoxoxox

 

[heapsreal]

hi heap. the thing is....it was SO hard on my body that I had to stop it early. and the improvements don't last....

hope you are still doing well

xoxoxox

Always read your post hoping you find some relief. Seems like your on the right track with lyme, hope you can nail it.

I posted a study a short while ago about roxithromycin and bactrim for chronic lyme. Seem to get good results comparable with iv abx.

I was doing ok. Had a shingles outbreak on side of head. Getting alot of headaches etc. Im definitely in herpes sub group and probably others I dont know yet. Im looking into lyme as I also feel better on abx.

its a long time since we started on prohealth

 

[Daffodil]

Always read your post hoping you find some relief. Seems like your on the right track with lyme, hope you can nail it.

I posted a study a short while ago about roxithromycin and bactrim for chronic lyme. Seem to get good results comparable with iv abx.

I was doing ok. Had a shingles outbreak on side of head. Getting alot of headaches etc. Im definitely in herpes sub group and probably others I dont know yet. Im looking into lyme as I also feel better on abx.

its a long time since we started on prohealth

ha! yes....I rarely check that site these days. thanks for the well wishes I hope the same for you

 

[susank]

Daf - good to hear from you. Have been wondering about you.
Sorry things not going so well for you - I understand - not going well for me either.
I continue with the Gamunex SubQ.
Curious - it will be cheaper for you to go to Brussels and get months supply of Gamma than what you have previously been doing? What is the cost of Gammanorm? Must be "cheap". You will do SubQ or IM?

FWIW I have been experimenting with essential oils. I think some of them actually help.

 

[Daffodil]

Daf - good to hear from you. Have been wondering about you.
Sorry things not going so well for you - I understand - not going well for me either.
I continue with the Gamunex SubQ.
Curious - it will be cheaper for you to go to Brussels and get months supply of Gamma than what you have previously been doing? What is the cost of Gammanorm? Must be "cheap". You will do SubQ or IM?

FWIW I have been experimenting with essential oils. I think some of them actually help.

hi susan. im sorry you arent doing too well either.

how much gamunex do you take?how long have you been sick? also, how long have you been on gamunex? lol sorry i dont remember anything.

in the USA, gamunex is about $100 a gram but in belgium, gammanorm is about $57 a gram. i think immunoglobulin may be even cheaper in canada but no one will give it to me here. and i have to see kdm every year anyway so might as well go to belgium.

i was hoping i would be doing subQ but now i think it might be IM because i was reading some norwegian forums and they seem to be doing IM....and i think its the same method kdm uses. i think i will ask if i can do subQ instead.

i know a woman who lives CFS-free because she treated early and takes 25 g of IVIG a month. if i could turn back time to when i had more money left and it was early in the illness, i would just go to belgium every year and get 25 g/month. it would have been worth the cost considering everything that has happened since!

i met another woman who lives a pretty normal life because she got IVIG early from dr. levine in NYC. as shown in the recent norway study, treating early seems to be key. :-/

anyway, i really feel like i am backsliding big time. i wonder if there is some way to know if there might be some abortive EBV proteins being pumped out, as some researchers suggest. i dont think there is any test for that and my IgG/IgM/PCR etc etc have never shown much. wonder if there is any merit to the LTT ELISPOT for EBV.

xoxoxo\Daff

 

[susank]

Daf - dunno about the EBV stuff. Hard to test while on Gamma replacement.
Gamma has EBV antibodies in it.
Off Gamma I asked to have the EBV Early Antigen part of the test run.
Sometimes would show active EBV - sometimes not - though nothing certain with any of this.

I don't know how you will be able to do that much Gamma IM. I understand the injections are painful.
I do think I read that Gammanorm could be used IM and SubQ.

Do you still have your pump and harpoons for SubQ?

I do about 10g Gamunex SubQ per month. Should do more since I have CVID.

And remember I do not use a "sump pump". Just a syringe, and a butterfly needle.
Just like giving a SubQ injection. But since I infuse 10cc's each setting - and don't want to hold a needle in my leg for hours - much easier to tape the BF needle in place - it therefore won't move. And I can push on the syringe as slowly as I want.

 

[Daffodil]

Daf - dunno about the EBV stuff. Hard to test while on Gamma replacement.
Gamma has EBV antibodies in it.
Off Gamma I asked to have the EBV Early Antigen part of the test run.
Sometimes would show active EBV - sometimes not - though nothing certain with any of this.

I don't know how you will be able to do that much Gamma IM. I understand the injections are painful.
I do think I read that Gammanorm could be used IM and SubQ.

Do you still have your pump and harpoons for SubQ?

I do about 10g Gamunex SubQ per month. Should do more since I have CVID.

And remember I do not use a "sump pump". Just a syringe, and a butterfly needle.
Just like giving a SubQ injection. But since I infuse 10cc's each setting - and don't want to hold a needle in my leg for hours - much easier to tape the BF needle in place - it therefore won't move. And I can push on the syringe as slowly as I want.

hey i remember you now! as soon as you said "harpoon" i remembered haha

i no longer have the needles and pump. last time, i got the stuff from Infuserve but now since i am not buying gamunex from them, the pump is $10 a day to rent...so maybe i have to buy one off ebay ugh. i really want to use one.

i also hate IM injections. i definitely will ask to do it sub Q

could you tell me how long you have been sick, when you started 10 g/month gamunex, and if it helps significantly?? and if so, when it started to help??

thank you!
xoxo