Daffodil
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Bless you, Rrrr, for reporting here. Hope this interesting kind of progress continues.
xoxoxox
xoxoxox
Gamma globulin
- Thread starter Rrrr
- Start date
Some thoughts on recent posts:
1) If filtered down to the prion level, exactly how are bacteria such as borrelia and bartonella going to make it into the IVIG? That quote from Cowden is ridiculous.
2) It doesn't go down in price as far as I know, if you get more grams.
3) Daffodil, I think it's worth trying those small amounts.
1) If filtered down to the prion level, exactly how are bacteria such as borrelia and bartonella going to make it into the IVIG? That quote from Cowden is ridiculous.
2) It doesn't go down in price as far as I know, if you get more grams.
3) Daffodil, I think it's worth trying those small amounts.
Daffodil
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i think when KDM said its "like building a house", he meant we have to come at the illness from different angles...treating viruses, bacteria, and boosting the immune system...?
immunoglobulin is also known for activity against autoimmunity
immunoglobulin is also known for activity against autoimmunity
We need a good foundation to support the walls, sturdy walls to support the roof, etc. Basically we need to get the immune system functioning well enough to tolerate and assist the antibiotics, etc, in doing their job.
To carry the analogy a bit further, the entire structure is somewhat vulnerable until the roof and windows are installed. So until the pathogen is killed off, the immune system (foundation) remains vulnerable. It's a bit recursive that way ... the foundation is needed before you can construct the roof, but the roof needs to get in to protect the foundation.
Not a simple task, especially when it's pouring!
Daffodil
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indeedupdate
yesterday, after a decent day in which i felt wiped out but was still -- surprisingly -- able to do some stuff out in the world, including walking a few blocks (rare!!), i came home and did 2/10th of a cc of Gamunex-C. my first shot in 8 days. that was at 4 pm. and i did a coffee enema immediately after, in case that would help stave away the crash i tend to get from the shots. today i was my usual: sicker-after-the-shot. but not as sick as i could be! as the day progressed, i got worse. so i did another coffee enema and vo-la!, better for a few hours anyway. we'll see how tomorrow goes.
i'm still getting the supplement vinpocetin in. doing about 3-5 mg per day now.
interesting side note: i think gamma globulin makes me prone to feelings of frustration and anger. i feel a lot less patient with others and myself on the few days after shooting up. i heard another patient say the same thing. weird, eh?
yesterday, after a decent day in which i felt wiped out but was still -- surprisingly -- able to do some stuff out in the world, including walking a few blocks (rare!!), i came home and did 2/10th of a cc of Gamunex-C. my first shot in 8 days. that was at 4 pm. and i did a coffee enema immediately after, in case that would help stave away the crash i tend to get from the shots. today i was my usual: sicker-after-the-shot. but not as sick as i could be! as the day progressed, i got worse. so i did another coffee enema and vo-la!, better for a few hours anyway. we'll see how tomorrow goes.
i'm still getting the supplement vinpocetin in. doing about 3-5 mg per day now.
interesting side note: i think gamma globulin makes me prone to feelings of frustration and anger. i feel a lot less patient with others and myself on the few days after shooting up. i heard another patient say the same thing. weird, eh?
Thanks all for an interesting thread. I was recently diagnosed definitely with Lyme. My doctor prescribed, together with antibiotics, intramuscular injections with gammaglobulin. I haven´t had any yet.
After studying GG I realize that after GG injections I should have got antibodies for many different agents, so any blood tests for antibodies would then not be appropriate. Did I get this right?
( My IgG and IgM for Lyme where four times higher when retested after 6 months, though I had had together 4 months of antibiotics. "Luckily" I ended up with heart problems after being off antibiotics for three weeks, and I finally got a Lyme diagnose).
After studying GG I realize that after GG injections I should have got antibodies for many different agents, so any blood tests for antibodies would then not be appropriate. Did I get this right?
( My IgG and IgM for Lyme where four times higher when retested after 6 months, though I had had together 4 months of antibiotics. "Luckily" I ended up with heart problems after being off antibiotics for three weeks, and I finally got a Lyme diagnose).
Ema
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Yes, technically this is correct because you will also be measuring donor antibodies along with your own.
However, I don't personally think that this makes antibody testing completely useless when on IgG therapy. IgG replacement is combined from tens to hundreds of thousands of donors. It would be very unlikely in my mind to get *enough* antibodies to show up as a chronic infection (IgG antibody levels against a specific antigen many times greater than normal) through donor replacement.
You might get some antibodies showing up in the normal range that you'd not had previously but I think that would be it. I think you would still be able to see changes in your own antibody levels as well if they are highly elevated due to chronic infection.
I know that this was the case for me. I specifically asked my doctor about testing while on SCIG and he also agreed that it would be unlikely to get enough antibodies from replacement to suggest a new, chronic infection had suddenly appeared.
It is something to keep in mind though.
It's also something to keep in mind that if you typically produce *low* IgG antibodies in general, infections you do have may not be showing up well on antibody testing.
Antibody testing in general is very limited in utility, especially in the immunodeficient population, for these reasons.
The antibiotic challenge was something my doctor told me about. In very technical terms, the Bb bacteria are very good at hiding from the immune system. The way that they do this (in cell tissues and biofilms) can essentially evade the immune system so it stops making antibodies against it. When you start taking antibiotics, it can rile up the immune system response so a stronger response is seen on the antibody testing.
I found this reference to it on the LymeMD blog...Dr Jaller is a very well known LLMD. The technical term for this phenomenon is "seroconversion".
http://lymemd.blogspot.com/2009/01/lyme-and-cdc-tangled-web.html?m=1
Thanks @Ema. @Rrrr, I hope you don´t mind this discussion. At least it has to do with antibodies and gammaglobulin .
I haven´t been tested for co-infections so that´s why I am a bit concerned how the GG treatment could have an impact on antibodies for other pathogens than BB. Should I have a panel for co-infections done before the GG injections? Infectolabs in Germany is a choice, but expensive.
According to a Lyme doctor and researcher I´ve been in contact with, a test for BB antibodies IgG and IgM that is repeated after some months and even better also after a course of antibiotics is recommended. If the first test didn´t show enough high numbers to proof an ongoing Lyme, a second test could do. If lowered values after antibiotics, an actual Lyme infection has been treated (maybe not completely though). And if higher numbers after antibiotics, the infection is still ongoing. FWIW
This recommendation is similar to the antibiotic challenge your doctor, Ema, told you about. Doctor Jaller´s case was really worth reading. Never give up...
. I haven´t been tested for co-infections so that´s why I am a bit concerned how the GG treatment could have an impact on antibodies for other pathogens than BB. Should I have a panel for co-infections done before the GG injections? Infectolabs in Germany is a choice, but expensive.
According to a Lyme doctor and researcher I´ve been in contact with, a test for BB antibodies IgG and IgM that is repeated after some months and even better also after a course of antibiotics is recommended. If the first test didn´t show enough high numbers to proof an ongoing Lyme, a second test could do. If lowered values after antibiotics, an actual Lyme infection has been treated (maybe not completely though). And if higher numbers after antibiotics, the infection is still ongoing. FWIW
This recommendation is similar to the antibiotic challenge your doctor, Ema, told you about. Doctor Jaller´s case was really worth reading. Never give up...
Did I hear my name? Susank here. Have been trying to sign on for weeks. Then realized I had incorrectly typed my email address in when registering. (bad sentence structure - sorry - late - tired).
I have been reading this thread with great interest.
Will comment soon.
JFYI - for self-pay - call Infuserve. Its a pharmacy that sells Gamma and Rocephin (as Ceftriaxone - ~$5/1g vial).
I think the Gamunex is about $90 1g vial from them. I think if your doctor Rx's it SubQ with butterly needle that is how you will get it. Bypass insurance and Accredo etc - don't buy supplies you don't need. IIRC.
Rrrrr - I think we must have been twins separated at birth. When I read your posts - everything is eerily similar to what I have gone through - and so much more. Susank
I have been reading this thread with great interest.
Will comment soon.
JFYI - for self-pay - call Infuserve. Its a pharmacy that sells Gamma and Rocephin (as Ceftriaxone - ~$5/1g vial).
I think the Gamunex is about $90 1g vial from them. I think if your doctor Rx's it SubQ with butterly needle that is how you will get it. Bypass insurance and Accredo etc - don't buy supplies you don't need. IIRC.
Rrrrr - I think we must have been twins separated at birth. When I read your posts - everything is eerily similar to what I have gone through - and so much more. Susank
Rrr - am reading parts of this thread again.
FWIW I was on IVIG for a couple of years for CVID. Got really tired of going to the infusion clinic.
When I read about the home/self-administered/daily SubQ push method - I wanted to try it.
Long story short - had to change doctors. The new doctor initially agreed to let me "push" - then changed his mind.
After I had gotten all my meds and supplies. I was forced/intimidated into doing 9g/week of Gammagard using the pump. "Or else". The day after my first 9g infusion I had the worst headache ever. Much much worse than I ever had after 20g Gammagard IV. I had to continue infusing that amount for about two months - knowing my levels would be tested. It about killed me.
I went to another doctor that agreed to let me push small doses. And take less GG per month. Switched to Gamunex.
I would still get headaches. I would take a week or so off and try again. Recently did that again - and this past week I infused one gram on Monday and one on Tuesday and felt dreadful. Today - Friday - I feel like I have aseptic mengitis (that can happen with high dose Gamma). But my dose was low.
I swear starting off too high a year ago at 9g/week did me in - which continues.
I recently had an insurance change and almost don't want to go to the trouble of trying to get their approval.
The micro-dosing appeals to me. If I were to do that it would be without insurance and I would self-pay.
Rrrr - I don't know how you got covered for the Gamma. Some insurance companies will not cover - or fight to cover patients that are so sick from having CVID that w/o Gamma they are frequently hospitalized.
The rules about using Gamma are so strict. It is considered off label to infuse SubQ w/o a pump.
I felt like I had won a small victory when my doctor and insurance company agreed to let me "push" with a BF needle/tubing and not use the pump. I think the FDA and manufacturers made it "the law" that a pump must be used. Of course doctors can Rx it off label - allowing infusing with butterfly needles - but many don't want to risk (what?) by doing anything off label.
To me it is incredible that your doctor, insurance company and Accredo will allow you to;
-use only a fraction of a vial and let you waste the rest
-inject the few cc's with just a needle and syringe? like a B12 shot?
Dunno - the manufacturer might "wig" if this was known.
But I totally agree with what you are doing!!!
Gamma started off as IM injections - just the drug, needle and syringe.
Then went to IV - more supplies needed.
Then SubQ - with even more supplies. Ridiculous (altho some folks OK with all that stuff - miles of tubing, the stupid pump etc etc etc - AND what all that costs!)
It makes perfect sense to inject SubQ with just a needle and a syringe.
Of course the difference is the dose. 20g IV is about 200 cc's.
And back in the day - immune deficient folks were being injected with several cc's of Gamma. Painful!
But if folks only want or only can tolerate small doses - it should not be a "deal" to inject a few cc's SubQ with a regular needle or a butterfly needle.
Too bad the SubQ Gamma does not come in smaller, cheaper, no waste vials!
More later - really tired - and have a really bad headache. Susank
FWIW I was on IVIG for a couple of years for CVID. Got really tired of going to the infusion clinic.
When I read about the home/self-administered/daily SubQ push method - I wanted to try it.
Long story short - had to change doctors. The new doctor initially agreed to let me "push" - then changed his mind.
After I had gotten all my meds and supplies. I was forced/intimidated into doing 9g/week of Gammagard using the pump. "Or else". The day after my first 9g infusion I had the worst headache ever. Much much worse than I ever had after 20g Gammagard IV. I had to continue infusing that amount for about two months - knowing my levels would be tested. It about killed me.
I went to another doctor that agreed to let me push small doses. And take less GG per month. Switched to Gamunex.
I would still get headaches. I would take a week or so off and try again. Recently did that again - and this past week I infused one gram on Monday and one on Tuesday and felt dreadful. Today - Friday - I feel like I have aseptic mengitis (that can happen with high dose Gamma). But my dose was low.
I swear starting off too high a year ago at 9g/week did me in - which continues.
I recently had an insurance change and almost don't want to go to the trouble of trying to get their approval.
The micro-dosing appeals to me. If I were to do that it would be without insurance and I would self-pay.
Rrrr - I don't know how you got covered for the Gamma. Some insurance companies will not cover - or fight to cover patients that are so sick from having CVID that w/o Gamma they are frequently hospitalized.
The rules about using Gamma are so strict. It is considered off label to infuse SubQ w/o a pump.
I felt like I had won a small victory when my doctor and insurance company agreed to let me "push" with a BF needle/tubing and not use the pump. I think the FDA and manufacturers made it "the law" that a pump must be used. Of course doctors can Rx it off label - allowing infusing with butterfly needles - but many don't want to risk (what?) by doing anything off label.
To me it is incredible that your doctor, insurance company and Accredo will allow you to;
-use only a fraction of a vial and let you waste the rest
-inject the few cc's with just a needle and syringe? like a B12 shot?
Dunno - the manufacturer might "wig" if this was known.
But I totally agree with what you are doing!!!
Gamma started off as IM injections - just the drug, needle and syringe.
Then went to IV - more supplies needed.
Then SubQ - with even more supplies. Ridiculous (altho some folks OK with all that stuff - miles of tubing, the stupid pump etc etc etc - AND what all that costs!)
It makes perfect sense to inject SubQ with just a needle and a syringe.
Of course the difference is the dose. 20g IV is about 200 cc's.
And back in the day - immune deficient folks were being injected with several cc's of Gamma. Painful!
But if folks only want or only can tolerate small doses - it should not be a "deal" to inject a few cc's SubQ with a regular needle or a butterfly needle.
Too bad the SubQ Gamma does not come in smaller, cheaper, no waste vials!
More later - really tired - and have a really bad headache. Susank
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Daffodil
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Helen...I realize this test it expensive, but what about the ELISPOT test for borellia (LTT - lymphocyte transformation test)?
I will be starting micro-doses of Gamunex myself soon....1 gram a week (I would do 2 g but cannot afford it).
I believe the price is about $90/gram at any pharmacy...
I will be starting micro-doses of Gamunex myself soon....1 gram a week (I would do 2 g but cannot afford it).
I believe the price is about $90/gram at any pharmacy...
kermit frogsquire
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I was wondering, does anybody know of a doctor who is willing to give Immunoglobulin in the UK? ... or even Europe at a stretch (not Dr Meirlier though). - if self-funding privately. It seems impossible to get the stuff for lover or money over here.
There are private fertility clinics giving IVIG to female patients but I don't know of anyone doing this for CFS or ME. The alternative would be to find a doctor who has a license to prescribe medications in the UK and then get a company like Healthcare@home to supply the infusion and then come to your home and do it there. That's what I did but the doctor who arranged this is no longer with us.
In UK there are still some doctors who do the IMIG injections. There is one who worked with Dr Richardson somewhere in the midlands or north but I have forgotten his name.
Have you tried the Breakspear (I've never asked them though)?
In UK there are still some doctors who do the IMIG injections. There is one who worked with Dr Richardson somewhere in the midlands or north but I have forgotten his name.
Have you tried the Breakspear (I've never asked them though)?
kermit frogsquire
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Hi UKxmrv,
The doctor who worked with Dr Richardson is sadly retiring (Dr Spur). Although, he was only prepared to give 0.8grams of IM injection every 2 weeks which is a drop in the ocean compared to the 10 to 30grams that most people need with other autoimmune conditions (and people responding to IVIG in clinical trials).
The difficulty is trying to find a doctor willing to prescribe. I'm not sure there is anyone at Breakspear who will do it, possibly Dr Yeoh would have done it but she isn't there anymore.
How much IVIG did you have and did it help any?
Further - I have wondered how 2cc of IGIM could be of any effect.
Why would it even come in 2cc vials?
That appears to be about 1/3 of a gram.
I have read where many years ago the IGIM was 20%.
Now it's about 16%.
Could that make that much of a difference?
Curious to note that 2cc of Gamastan equals approx 3cc of Gamunex - ie 1/3 gram.
That has never made sense to me.
Also if one looks at the open market pricing on FFF Enterprises note: (both Grifols brands)
$62 for Gamastan 2cc vial - 1/3 gram
$79 for Gamunex 10cc vial - 1 gram
How does that make sense?
FWIW the one doctor I saw (for SubQ) seemed to want to steer me away from Gamma replacement.
I had been on IVIG for about two years.
He said that many people with total IGG's in the 500's (like me) do fine w/o Gamma replacement.
(I am also low/out of range in three IGG subclasses and total IGA and one subclass).
He said that anyone would feel better with Gamma replacement because of the high protein content.
Compared it to the energy given from B12 injections. (Made me think that maybe Gamma acts like a performance enhancing drug).
Whatever - if one has CVID one needs Gamma replacement.
I almost wish I had stayed on monthly IVIG as I seem to do worse with SubQ.
Gotta make some decisions about this.
Months ago I asked my (now) prescribing doctor about doing the 1 gram/week that Dr T. recommends.
She said she did not see much results in her patients at that low dose.
She treats CFS, Lyme and immune deficiencies. Don't know what class of patients it did not help.
So she instead prescribes the Glutathione/ATP injections.
If I can no longer tolerate my usual CVID Gamma dose - I wonder if a gram a week would be of any help?
At least against viruses? And give some energy?
Why would it even come in 2cc vials?
That appears to be about 1/3 of a gram.
I have read where many years ago the IGIM was 20%.
Now it's about 16%.
Could that make that much of a difference?
Curious to note that 2cc of Gamastan equals approx 3cc of Gamunex - ie 1/3 gram.
That has never made sense to me.
Also if one looks at the open market pricing on FFF Enterprises note: (both Grifols brands)
$62 for Gamastan 2cc vial - 1/3 gram
$79 for Gamunex 10cc vial - 1 gram
How does that make sense?
FWIW the one doctor I saw (for SubQ) seemed to want to steer me away from Gamma replacement.
I had been on IVIG for about two years.
He said that many people with total IGG's in the 500's (like me) do fine w/o Gamma replacement.
(I am also low/out of range in three IGG subclasses and total IGA and one subclass).
He said that anyone would feel better with Gamma replacement because of the high protein content.
Compared it to the energy given from B12 injections. (Made me think that maybe Gamma acts like a performance enhancing drug).
Whatever - if one has CVID one needs Gamma replacement.
I almost wish I had stayed on monthly IVIG as I seem to do worse with SubQ.
Gotta make some decisions about this.
Months ago I asked my (now) prescribing doctor about doing the 1 gram/week that Dr T. recommends.
She said she did not see much results in her patients at that low dose.
She treats CFS, Lyme and immune deficiencies. Don't know what class of patients it did not help.
So she instead prescribes the Glutathione/ATP injections.
If I can no longer tolerate my usual CVID Gamma dose - I wonder if a gram a week would be of any help?
At least against viruses? And give some energy?
this is very interesting @susans-not-ok . do we know this is for sure a real option? i was actualy thinking that rocephin might be good to add into my protocol.
"for self-pay - call Infuserve. Its a pharmacy that sells Gamma and Rocephin (as Ceftriaxone - ~$5/1g vial). I think the Gamunex is about $90 1g vial from them. I think if your doctor Rx's it SubQ with butterly needle that is how you will get it. Bypass insurance and Accredo etc - don't buy supplies you don't need."
"for self-pay - call Infuserve. Its a pharmacy that sells Gamma and Rocephin (as Ceftriaxone - ~$5/1g vial). I think the Gamunex is about $90 1g vial from them. I think if your doctor Rx's it SubQ with butterly needle that is how you will get it. Bypass insurance and Accredo etc - don't buy supplies you don't need."