Subcutaneous immunoglobulin therapy

[Clerner]

I restarted about 4 weeks later at a lower dose - just 1.5ml twice a week and this caused a SEVERE herx reaction after two weeks at thi

Wow, the herx sounds awful! I'm already in so much pain and have fatigue. I'm scared to even try low doses. Thanks for your telling experience! I hope you continental to get better.

 

[Clerner]

n people symptomatic with Parvovirus, IVIG is used to heal it, even when the patient has normal IGG levels.

Wonder if insurance will pay for injections if you have proven high igg levels of parvovirus? Anyone know?

 

[Clerner]

@Rlman are you talking about IGG levels having to do with immunity? (By allergist/immunologist ) OR IGG levels in parvovirus? Sorry, new to this. Thanks.

 

[Rlman]

@Rlman are you talking about IGG levels having to do with immunity? (By allergist/immunologist ) OR IGG levels in parvovirus? Sorry, new to this. Thanks.

when testing for Parvo, they test IGG antibody levels to it. if IGG is high one would think that means your immune system is working since it can make antibodies to Parvo. But some people aren't able to fight off Parvo even if they have healthy amounts of IGG.

 

[Clerner]

@Rlman Thanks! That helps. My IGG levels were high.

 

[Clerner]

@Rlman So how does insurance determine who gets GG if both cases are possible?

 

[Rlman]

@Rlman So how does insurance determine who gets GG if both cases are possible?

do you have symptoms of Parvo infection? high igg can mean just that you had previous infection. insurance prob won't fund it unless you're have overall low antibodies unless your Dr. can do something. All above I've just read on PR, so don't rely on what I said.

 

[Clerner]

@Rlman yes, I thinks symptoms: pain all over, extreme fatigue. But, symptoms of parvo are general virus symptoms I think. Hard to tell if itso ebv or parvo! I will just have to talk to dr. Thanks!

 

[Daffodil]

I think this film is available in English somewhere. As far as I know one of two in this movie recovered from bedridden to almost 100% (working full time) with 0.825g of GG weekly. I think she got 5ml of Gammanorm.

i think the key is to be treated early. i have spoken to a few people who live almost normal lives because they were given IVIG early on in their illness.

 

[RYO]

@justy Thanks for sharing your experience. The correct dosing for immunoglobulin is what I am grappling with. From my reading of IVIG, higher doses are needed for immunosuppressive effects. At lower doses it may actually have an inflammatory effect.

The New England Journal of Medicine published a review article in November 22, 2012. "Intravenous Immune Globulin in Autoimmune and Inflammatory Diseases" by Dr. Erwin W. Gelfand MD. You can google the title of the article to read pdf file.

The article explores the potential mechanisms of action of immunoglobulin therapy.

Unfortunately, at the time the article was published, the author writes:
"In the United States, intravenous immune globulin has often been used for off-label indications.
A large number of diseases have shown potentially beneficial responses to intravenous immune
globulin, and for many of these diseases, Medicare or a commercial insurer has approved reimbursement for such therapy, often conditionally, requiring documentation of contraindications to or a lack of response to conventional therapies (Table 1). For most of these indications, evidence is available from only small, controlled trials or
from clinical experience with limited numbers of patients. According to these lines of evidence,there are a number of conditions for which intravenous immune globulin has not been considered medically necessary and would not be covered. For example, intravenous immune globulin has been used to treat autism and chronic fatigue
syndrome, but its effectiveness in these conditions is unsubstantiated."

For me, this article raises more questions especially in light of the Norwegian study using Rituximab.

I subscribe to the notion that there are subsets within ME/CFS. The better ongoing research can help to differentiate these subsets, the more refined the approach to potential treatments. My hope is that as ME/CFS research moves forward, resources are devoted to further studying the use of immunoglobulin in treating ME/CFS.

@Jonathan Edwards - Thank you for your thoughts on dosing of IVIG in another thread.

 

[justy]

Thanks for sharing your experience. The correct dosing for immunoglobulin is what I am grappling with. From my reading of IVIG, higher doses are needed for immunosuppressive effects. At lower doses it may actually have an inflammatory effect.

I have not read anything about it having an inflammatory effect at low doses - as I have bacterial infections it is thought the GG will help to start fighting this perhaps and also help to fight other infections viruses etc I pick up along the way that keep me chorncially ill? I am taking micro doses and have not noticed an increase in inflammation, in fact some of my inflammatory markers are reduced since starting.

There have been some studies done in PWME - Dr Nigel Speight talks about them in his Invest in Me preconference after dinner speech and how helpful it has been for some PWME - I cant find a link to it right now, or the studies he talks about.

There was also the Dr in Japan who got a lot of CFS patients well with rest, pure clean diet and GG injections twice weekly.

I admit my doses are a little low, but I am gradually working it up. I cant imagine having another herx reaction like the original one - I was bedbound for nearly three weeks and in a lot of pain, so am really taking it slowly.

 

[ErdemX]

There was also the Dr in Japan who got a lot of CFS patients well with rest, pure clean diet and GG injections twice weekly.

@justy, can you remember what kind of a diet this was?

 

[justy]

@justy, can you remember what kind of a diet this was?

I think it was mainly vegetables and rice. I'll try and find the link.

 

[justy]

@ErdemX - this is a link to Dr Thai Park's work in Korea, scroll down to p. 5

http://www.investinme.org/Documents/Journals/Journal of IiME Vol 1 Issue 2.pdf

 

[RYO]

I have not read anything about it having an inflammatory effect at low doses - as I have bacterial infections it is thought the GG will help to start fighting this perhaps and also help to fight other infections viruses etc I pick up along the way that keep me chorncially ill? I am taking micro doses and have not noticed an increase in inflammation, in fact some of my inflammatory markers are reduced since starting.

There have been some studies done in PWME - Dr Nigel Speight talks about them in his Invest in Me preconference after dinner speech and how helpful it has been for some PWME - I cant find a link to it right now, or the studies he talks about.

There was also the Dr in Japan who got a lot of CFS patients well with rest, pure clean diet and GG injections twice weekly.

I admit my doses are a little low, but I am gradually working it up. I cant imagine having another herx reaction like the original one - I was bedbound for nearly three weeks and in a lot of pain, so am really taking it slowly.

I think you are missing my point. IVIG at high dose has anti-inflammatory effect for diseases that clearly have autoimmune basis. When the article mentions pro-inflammatory effect, it can be interpretated that at low doses it would "ramp up" immune system to fight infection.

New England Journal of Medicine is a highly respected journal. This article is worth reading closely.

"Herx" reaction may have been immune system was stimulated to produce pro-inflammatory cytokines.

What hasn't been scientifically determined is whether ME/CFS is a chronic infection, autoimmune disease or both?

 

[Clerner]

@justy look up paradoxical effect if ivig. Sometime it can "heighten disease activity".

 

[justy]

@Clerner , @RYO - yes the herx reaction was proinflammatory cytokines being produced as the bacteria are 'ramped' up. Whislt this is a bad thing if too much inflammation is produced, it hink the point is that it will start fighting the infections I have.

My case is complex as I have both an underactive immune system that has stopped fighting the Borrelia and co AND overactive as I have low positive ANA and have moved into the group of people who no longer catch things.

Anyway, low dose GG is being used with M.E patients in Norway I think with quite a few patients reporting improvements, but slowly, and often people feel much worse in the beginning.

 

[susank]

Gamma for Parvo B19 - I think one requirement is some kind of anemia associated with PB19.

 

[maple]

What are the bloodwork markers of that anemia?

 

[susank]

I can't remember the blood markers - was researching for a friend who has this. You might try a google search - I think that's what I did. IIRC to get IVIG for Parvo one has to show they also have this certain kind of anemia.