Gamma globulin

[susank]

Plantibodies - just think of the possibilities!

http://www.reuters.com/article/2014/08/06/us-health-ebola-tobacco-idUSKBN0G607J20140806

http://en.wikipedia.org/wiki/Plantibody

Fascinating.

 

[Daffodil]

did another 1gram IG infusion last night. slept entire day today. was so tired, i could barely turn over in bed! bad fog too.

i havent taken cowden protocol for 2 days, not sure when to restart. dont think i can take 2 separate things that make me so sick.

 

[justy]

I have just heard back from my Dr and he wants me to do gammaglobulins IV - multigam 10g IV per month at a cost of 480 euros per month.

I have read this whole thread, but now cant remember if this is high or low dose. I know the cost is good- I was just told by a clinic in London that they do gammaguard by IV and it is £800 a pop. The London clinic also offers subq injections of a different GG product at £75 a shot once or twice weekly.

It may be that once monthly trips from London to Belgium could be OK by train, with one night stop over to rest after the infusion - it's possible I could stay with my mum and that she could come with me. I am not sure how long the Dr wants me to do them for, so we will see when I have a consult next week (by phone).

 

[Daffodil]

I have just heard back from my Dr and he wants me to do gammaglobulins IV - multigam 10g IV per month at a cost of 480 euros per month.

I have read this whole thread, but now cant remember if this is high or low dose. I know the cost is good- I was just told by a clinic in London that they do gammaguard by IV and it is £800 a pop. The London clinic also offers subq injections of a different GG product at £75 a shot once or twice weekly.

It may be that once monthly trips from London to Belgium could be OK by train, with one night stop over to rest after the infusion - it's possible I could stay with my mum and that she could come with me. I am not sure how long the Dr wants me to do them for, so we will see when I have a consult next week (by phone).

Hi Justy. That is a great price but I thought your doctor gave it every week? If it is only once a month, then I would definitely do the monthly train trips if you can!

This doctor usually does it for 6 months.

 

[justy]

Hi Justy. That is a great price but I thought your doctor gave it every week? If it is only once a month, then I would definitely do the monthly train trips if you can!

This doctor usually does it for 6 months.

Thanks Daffodil - i'll be speaking to my doctor next week by phone, so will quiz him further. The London clinic told me they may not be able to treat me if I am seeing another Dr as it may be a 'conflict of interest' - my appointment with their doctor is not until November, so I will have to see. Its nice to have options though.

 

[Daffodil]

Thanks Daffodil - i'll be speaking to my doctor next week by phone, so will quiz him further. The London clinic told me they may not be able to treat me if I am seeing another Dr as it may be a 'conflict of interest' - my appointment with their doctor is not until November, so I will have to see. Its nice to have options though.

why not infuse it yourself with a subQ pump? thas what i do

 

[justy]

why not infuse it yourself with a subQ pump? thas what i do

I'm not prepared to try treatments at home that could cause adverse reactions etc. I live in a VERY remote place, an ambulance would take at minimum 30 minutes to arrive, and I have anxiety issues.

I definitely want to be in a nice safe clinic with nursing staff to look after me in case anything happens.

 

[Daffodil]

Hi Justy. That is understandable. I would say 10 g a month is not a high dose...the usual dose for IG is 20 - 30 I think. Many CFS docs prefer the lower doses.

Best of luck!!

 

[deleder2k]

If you do IVIG, I think 1 time each month is necessary. If you do intramuscular I think you need to do it once a week. If you doctor in Belgium prescribe you with a medicine, can't a medical centre or something help you inject it? If you get it intra muscular that should be possible. You can buy all the medicine you need in another EU country (for up to a year I think)

 

[heapsreal]

If you do IVIG, I think 1 time each month is necessary. If you do intramuscular I think you need to do it once a week. If you doctor in Belgium prescribe you with a medicine, can't a medical centre or something help you inject it? If you get it intra muscular that should be possible. You can buy all the medicine you need in another EU country (for up to a year I think)

What doses have u seen IM used??

 

[deleder2k]

5 ml of Gammanorm. I think Gammanorm is available in Australia. Seems that 5ml is equal to 0.825g. http://www.octapharma.com.au/fileadmin/user_upload/octapharma.au/product_docs/gnorm_PI_28mar13.pdf

Talked to my specialist the other day. She have prescribed Gamma globuline to 58 patients. 50% with no response, 50% with a significant response. 30% with a major response (getting back to work/school).

 

[justy]

Thanks @deleder2k for the suggestion. I'm not sure though that I could find a clinic to do the injections here. I live in a very remote place, there are no home nursing services etc, or private clinics in the area.

At the dose you mention, how many shots IM a week would that be - one or two? Silly question perhaps, but I understand that the IM is a deep intra muscular injection - sounds VERY painful - what do you think?

 

[deleder2k]

5 ml every 7 days. 5 ml is much, so I guess you have to do two shots. I reckon it is not comfortable, but my doctor frequently prescribes for that dose regime. It can't be that painful

 

[justy]

5 ml every 7 days. 5 ml is much, so I guess you have to do two shots. I guess it is not comfortable, but my doctor frequently prescribes it. It can't be that painful

My Doctor is suggesting 10gm a month, as an IV infusion- that sounds like a lot then in comparison to what your doctor in Norway is suggesting. Not sure i'm comfortable jumping straight in with a big dose.

 

[deleder2k]

I'm not sure if it is a lot. What my doctor is prescribing is low compared to standard treatments with gammaglobulin. I am not sure why the dose is only 0.825g a week. I think she figured out that that is enough to produce the effect. I really don't know. I don't think you should worry. There are almost no known side effects.

 

[Charles555nc]

I'm not sure if it is a lot. What my doctor is prescribing is low compared to standard treatments with gammaglobulin. I am not sure why the dose is only 0.825g a week. I think she figured out that that is enough to produce the effect. I really don't know. I don't think you should worry. There are almost no known side effects.

benedryl has helped every one of my symptoms, including anxiety, when im having a herxheimer reaction. Now I wanna try gammeglobulins!

 

[Charles555nc]

did another 1gram IG infusion last night. slept entire day today. was so tired, i could barely turn over in bed! bad fog too.

i havent taken cowden protocol for 2 days, not sure when to restart. dont think i can take 2 separate things that make me so sick.

I want to try gammoglobulins but my labs tests were low but in the normal range, so my doctor wont try them. Is there anyway I could get them online or convince my doc that normal isnt always acceptable?

 

[deleder2k]

I am not a M.D, but I think the point is not to increase the value of them, but rather to get healthy gamma globulines back into the system.

http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

 

[Daffodil]

I am not a M.D, but I think the point is not to increase the value of them, but rather to get healthy gamma globulines back into the system.

http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

hi charles. you can print out the articles that talk about demeirleir and teitelbaum using IG...and there may be some studies with CFS patients, too

 

[susank]

Hi - I wanted to check in. I have had a rough past few weeks.

I tripped and fell on my left side/hip - pain everywhere. As if I were not already in enough pain.

Overall I am just at a loss as to what to do.

I feel like I am dying by inches - and don't know from what.

Something is getting worse and I don't know what that something is.

I am questioning my Lyme/Bart H Dx even though I tested positive.

Maybe the Lyme culture test was contaminted (per the CDC) and maybe my WB blot bands are cross reactions from other pathogens. Whatever - I cannot handle the antibiotic treatments anymore. Am trying herbs.

My eyes and mouth are even more dry and painful. Sjogren's and all autoimmune tests negative. Though I have never done a lip biopsy. Don't want to endure another unreliable test.

Headaches, head pressure and brain fog worse. Have stopped Doxycycline.

The only thing I am certain I have is CVID. My new insurance approved me for SCIG/IVIG which was a big relief.
But maybe I am not tolerating the Gamma now either.

Sorry for such a pitiful post.

I did want to mention - if I have not done so before - that I noticed something with my Globulins and A/G ration from the simple CMP's (metabolic profile).

Pre 2006 my Globulins and A/G ratios were normal.

2006 is when I crashed. Sjogren's symptoms and worse. Lyme? Bart H?

Starting in 2006 on my CMP's my Globulin levels fell low/out of range - A/G ratios went high/out of range.

Something triggered that - but what?

No doctors commented on it. But I have read and seems to me that when those values are abnormal that's a clue
that something is wrong - probably with the immune system.

In 2006 one doctor did run a GAM panel - showing low total IGG. That was overlooked.

Finally in 2010 another doctor checked and I finally got the HypoG/CVID Dx.

Have others checked their bloodwork over the years? The G's and A/G ratio on the CMP?