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» LymeNet Flash » Questions and Discussion » Medical Questions » Some Good News and Questions re: IV Gamma Globulin

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Author Topic: Some Good News and Questions re: IV Gamma Globulin
hopingandpraying
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Finally, we received some great news today when our LLMD called with our son's blood test and brain spect scan results. For the first time in almost a year and a half of treatment, our son is NEGATIVE for Babesiosis!!

Thanks to Almighty God and all of you on this website for your prayers, info sharing and support (and, of course, to our wonderful LLMD!!). We are by no means out of the woods yet!

Our doc is recommending IV Gamma Globulin infusions 2-3 times per week for approx.6-8 months.I have been researching about this on previous posts.

Have any of you been treated with IV Gamma Globulin? How was it administered? Did it help? Side effects or concerns? Herxing?

Have any of your children (teenagers) been treated this way? What were the results?

We are concerned about the Gamma Globulin, as it is obtained from human blood. Our LLMD said it is obtained from a pool of regular,long-term donors and is thoroughly checked for viruses, bacteria, etc. and irradiated.

Our son tests high for C3d Immune Complex (meaning he may develop autoimmune disease/es because of the Lyme) and has a high level of antibodies.

We need to find out if our son is a candidate for this treatment and if our insurance will cover this (it is very expensive!).

In the meantime, any input will be appreciated, as always. Thank you.

Posts: 8756 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Aligondo Bruce
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2-3 times a week is excessive. most IViG treatments are once a month. there's no possibility your insurance company will cover this IMO. I'd be surprised anyway, unless the IG treatments are in smaller doses.

IViG is generally safe. it is subjected to screening, several chemical treatments and cold temps etc. which will inactivate/destroy anything bad. the main danger is an allergic reaction to the IG.

what were your son's spect results btw?

Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
onthemend
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This is under consideration for me.

I've been told it is once a month, and takes about 12 - 18 months. It's an IV which takes about 6 hours to administer. You can walk around while it is happening.

No doubt there are variations on above, just sharing what I've been told.

i will follow this thread with interest - gool luck and please keep US updated too.

otm

Posts: 314 | From east coast | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Sorry, I forgot to include "once a month" in my original post for the IV Gamma Globulin infusion. His LLMD said it would take approx. 1 hour for the infusion.

We need to find out if he is a good candidate for this treatment (his LLMD thinks so). I have contacted the Lyme-literate neurologist our doc works with and am awaiting further instructions.

I don't know if he will consult with our doc and/or we will have to see him. I will keep you posted.

Thanks Aligondo Bruce and onthemend for your replies. BTW, his brain spect is the same as last year's (some minor abnormalities).

Posts: 8756 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
ArtistDi
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I have been doing IVIG since July, and it is really an individual-based protocol when working
with a doctor. Most people do it once a month,
but there are variations. I do it once every two weeks. Everyone's experience will differ,
but initially I had a lot of achiness, especially
after infusion of IV doxy.

I think that it takes time for the gamma to build
up in a system, but I know it is working for me. I was tested by the neuro in NYC, and found to
have nerve damage. Testing was extremely expensive;however, a medical arts grant paid for
mine.

I find that it helps with fatigue, cognitive skills, gut issues and overall, just makes me
feel better now. Initially, for the first couple
of months, lots of achiness. Whether it was my
body trying to adjust to it, or it was helping
my body to fight infections...don't know.

Gammunex is the one I have been on, and it is
the most pure of allergens.

I would go slowly with it, trying a trial dose.
Usually it is 20grams per 100 lbs., so I don't know what the "normal" dose is for a child.

ArtistDi

Posts: 1565 | From Hatfield, MA, USA | Registered: Mar 2002  |  IP: Logged | Report this post to a Moderator
sparkle7
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I had a few shots with GammaGlobulin & didn't notice much of a

difference. It's expensive & seems like more of a luxury than a

necessity. I don't know what an IV would do or if long term

treatment would be better.

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
achey
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I have been doing IVIG since the end of May.. 4 infusions per month. I take 40 gms of octigam per week. It takes abt 4-5 hrs to infuse. I have also been treating with colliodal and ionic silver since July when my Lyme and babesia symptoms returned. I can't take abx anymore due to autoimmune problems.

Prior to the IVIG being approved by my insurance co... they took 21 months to approve treatment... I had ALS symptoms and siezures.

Since beginiing the IVIG I have seen weekly improvements! My life is hugely different than it has been for much of my previous life! I can think and work and remember! I don't have seizures naymore, or take seizure meds! Things just keep getting better, beyond what I ever could have expected.

I feel so blessed to be healing!

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sunnymalibu
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I've had gamma globulin shots in the past and they made me feel much better. Unfortunatley my doctor had problems getting the shot and I ahvent been able to get them since.

I hope your son is a candidate and that they work for him!

Good luck and best wishes!

--------------------
sunnymalibu

Posts: 192 | From california | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Thanks to all for the information and wishes. Our LLMD said some of the side effects of the IV Gamma Globulin treatment could be chills, fever, more pain (!), herxing, etc., but during the time of treatment.

We are still awaiting word from him and the Lyme-literate neuro to let us know if my son is a candidate (we might have to see the neuro doc). Also, if insurance will cover this.

Posts: 8756 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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