IVIG anyone? Our turn is coming soon! :-)

[mommakath]

So, any of you had IVIG? How do you handle the normal steroids given before it? My PANDAS and LYME docs have talked and worked it out.....just curious about those of you who have gone before me. DS9 is scheduled in April.....anyone seen any positive results from IVIG? THANKS!

[KeithandElizabeth]

My son had 4 to 5 small dose IVIG's and 2 high dose IVIG's and we never did the steroids with the IVIG's. Steroids suppress lyme and are therefore usually avoided in lyme treatment. The IVIG's went fine without the steroids, but I do not know if they really helped us in the long run. We did see a reprieve with the two high dose IVIG's, but they were not sustained and we then decided to let our son try to fight the lyme on his own.

 

Elizabeth

[Suzan]

All of our IVIG's were pre-lyme diagnosis/treatment but our llmd suggested another later on, maybe next year if we need it. We never used steriods with our IVIG's either.

 

GOOD LUCK!

[LNN]

We did 1 HD IVIG before we knew about lyme. No steroids before or after the procedure (tho 2 steroid tapers months prior did wonders). I'm not sure the IVIG helped.

 

I do know a few lyme/Pandas families who are using IVIG as part of their lyme treatment and they feel it has helped. But it's been a rough road for them.

[jayjay]

My son has had 4 hd IVIGs. 2 of them after starting Lyme treatment. He is scheduled for another in April. We did not give him steroids before and he did fine. With each IVIG he has had less and less reaction to it. For example, the first IVIG he was horribly sick with, migraine, nausea, vomiting for days. His last one he had a mild headache and was back to school the next day. We have seen very positive results. Bumpy, but definitely headed in the right direction.

[momaine]

Despite having used steroids in the past both with ivig and to help with pandas symptoms, the first two ivigs helped enormously.

 

Our Dr.s said it was a small enough dose/length of treatment not to make a big difference with the Lyme. (same with use of benedryl) But, dd just had ivig the last two days and this time instead of 6 days, we are going to TRY to just do 3 days of prednisone and see how she does. Since she has had head aches and one migraine from ivig, we may give her advil for a few days to help with possibly inflammation. We are going to really push the liquids for the next week too.

 

So, this was dd's fifth ivig over all and her first since her lyme diagnosis. She's in a terrible herx right now. We stopped all antibiotics for two days to give her body a break. Hoping things don't get much worse before they get better.

[sf_mom]

The bad reaction to hdIVIG is 'potentially' a cytokine storm = inflammation due to 'die-off'. Anything you can do to help eliminate toxins and decrease inflammation (minus steroid use) should help with symptoms. Epsom salt baths, motrin or similar, any kind of bile binder, etc.

 

Think of the IVIG as one big massive antibiotic dose that takes time to wear off.

 

-Wendy

Edited March 11, 2011 by SF Mom

[momaine]

I guess I wasn't clear.

 

Dd was herxing badly before the IVIG, from Lyme treatment. It had actually been 12 weeks since her last ivig because of an insurance change. Our lyme dr. had us stop all antibiotics for the two days of IVIG treatment to give her body a break, hoping it would slow the herxing.

 

Not sure which helped but today she woke up a new kid. Either the break from antibiotics helped or the ivig has already helped. She was so much better today than she had been for 10 or 11 days. She really needed a break. She knows the herxing is a good thing, but you can only take so much. (saw a facial tic I hadn't seen in a long time recently.)

 

With past IVIGs my dd has worsened only moderately for about a week before seeing improvement in her ocd. Usually she has improvement in her mood/anxiety level right off the bat. Here's hoping it lasts a little while.

[sf_mom]

Totally miss interpreted your post, sorry. Many of us have periodically stopped antibiotics to determine Herx or not and typically within 48 hours is there is improvement confirming herx. I backed down on the tindamax because it was so rough. Truly a balancing act of treatment verses herx.

 

I am hopeful the combo treatments helps tremendously for DD. Please keep updating as many are trying to make similar decisions. Had a long talk with our Dr. again yesterday about its use.

 

-Wendy

[philamom]

y

Edited April 29, 2012 by philamom

[philamom]

y

Edited April 29, 2012 by philamom

[sf_mom]

I don't think it would hurt to contact Dr. J. I know when Mom2Alex's son flair'd due to strep exposure they prescribed 10 days of cholestyramine.

 

http://www.latitudes.org/forums/index.php?showtopic=12725

 

I would also rerun streptozyme to see what is going on and perhaps consider antibiotic rotation if the titers are up further...... 'anything' to help her deal with the potential strep if its the cause.

 

Of course do anything to help with detox and symptoms..... I know you know them all but could you get a full cup of bentonite in her at bedtime? AND, as you know it may just take time for things to settle post hdIVIG.

 

-Wendy

Edited March 16, 2011 by SF Mom

[philamom]

y

Edited April 29, 2012 by philamom

[sf_mom]

Perfect schedule. I'm praying for gains making it all worth it for your DD.

[philamom]

I don't think it would hurt to contact Dr. J. I know when Mom2Alex's son flair'd due to strep exposure they prescribed 10 days of cholestyramine.

 

http://www.latitudes.org/forums/index.php?showtopic=12725

 

I would also rerun streptozyme to see what is going on and perhaps consider antibiotic rotation if the titers are up further...... 'anything' to help her deal with the potential strep if its the cause.

 

Of course do anything to help with detox and symptoms..... I know you know them all but could you get a full cup of bentonite in her at bedtime? AND, as you know it may just take time for things to settle post hdIVIG.

 

-Wendy

y

Edited April 29, 2012 by philamom