hdIVIG over 5 days

[laure]

Dd11 scheduled for second IVIG in one week. First IVIG 7 weeks ago yielded no result. (her symptoms are all neuro, all OCD) LLMD prescribing IVIG wants longer dose, 5 days of hdIVIG, as opposed to 2 days she received the first time. I am skeptical...about his knowledge of the use for lyme even...she only had slightly low IgG levels, so this was speculative treatment in the first place. Anyone have any experience/success with this? She has been aggressively treated for 2 years now, testing for lyme and babesia currently, had a CD57 of 50 2 months ago. Currently on Augmentin XR 2000mg 2 x a day, zithromycin, mepron, nystatin, tindamax, and lots of herbals. She has also tried IV rocephin, but only for one month, after no results docs wanted to stop. She currently cannot attend school, all contamination fears about school germs contaminating the home, and unfortunately now the home is mostly contaminated too.

Any input appreciated!

[ShaesMom]

Dd11 scheduled for second IVIG in one week. First IVIG 7 weeks ago yielded no result. (her symptoms are all neuro, all OCD) LLMD prescribing IVIG wants longer dose, 5 days of hdIVIG, as opposed to 2 days she received the first time. I am skeptical...about his knowledge of the use for lyme even...she only had slightly low IgG levels, so this was speculative treatment in the first place. Anyone have any experience/success with this? She has been aggressively treated for 2 years now, testing for lyme and babesia currently, had a CD57 of 50 2 months ago. Currently on Augmentin XR 2000mg 2 x a day, zithromycin, mepron, nystatin, tindamax, and lots of herbals. She has also tried IV rocephin, but only for one month, after no results docs wanted to stop. She currently cannot attend school, all contamination fears about school germs contaminating the home, and unfortunately now the home is mostly contaminated too.

Any input appreciated!

So when you say longer dose, is LLMD giving the total same amount as before only over a five day period or giving the same daily dose for five days instead of two? I have never heard of anyone doing five straight days of IVIG-high dose or normal dose-and we are a monthly IVIG family. I would be concerned my dd would have a terrible reaction. Will it be done in the hospital?

[Fixit]

Dd11 scheduled for second IVIG in one week. First IVIG 7 weeks ago yielded no result. (her symptoms are all neuro, all OCD) LLMD prescribing IVIG wants longer dose, 5 days of hdIVIG, as opposed to 2 days she received the first time. I am skeptical...about his knowledge of the use for lyme even...she only had slightly low IgG levels, so this was speculative treatment in the first place. Anyone have any experience/success with this? She has been aggressively treated for 2 years now, testing for lyme and babesia currently, had a CD57 of 50 2 months ago. Currently on Augmentin XR 2000mg 2 x a day, zithromycin, mepron, nystatin, tindamax, and lots of herbals. She has also tried IV rocephin, but only for one month, after no results docs wanted to stop. She currently cannot attend school, all contamination fears about school germs contaminating the home, and unfortunately now the home is mostly contaminated too.

Any input appreciated!

 

I have no real input, but i heard of a Dr(i dont' remember who, or who told me) that supposedly treats PANDAS by giving ivig for 5 days. But either gives a minimum of 4-8 treatments, (and sorry for being so vague, as i have tried to find out who this was to figure out the theory) and i want to say either does it every week in a row, or one every month...and supposedly believes this way is curative...IDK. I would love to find out who this is and talk to them.

I think you may need to really look at methylization to have better results with some protocals you my be attempting.

i wish i had more to offer, but maybe these open some other thoughts for you.

Edited October 16, 2012 by Fixit

[laure]

Dd11 scheduled for second IVIG in one week. First IVIG 7 weeks ago yielded no result. (her symptoms are all neuro, all OCD) LLMD prescribing IVIG wants longer dose, 5 days of hdIVIG, as opposed to 2 days she received the first time. I am skeptical...about his knowledge of the use for lyme even...she only had slightly low IgG levels, so this was speculative treatment in the first place. Anyone have any experience/success with this? She has been aggressively treated for 2 years now, testing for lyme and babesia currently, had a CD57 of 50 2 months ago. Currently on Augmentin XR 2000mg 2 x a day, zithromycin, mepron, nystatin, tindamax, and lots of herbals. She has also tried IV rocephin, but only for one month, after no results docs wanted to stop. She currently cannot attend school, all contamination fears about school germs contaminating the home, and unfortunately now the home is mostly contaminated too.

Any input appreciated!

So when you say longer dose, is LLMD giving the total same amount as before only over a five day period or giving the same daily dose for five days instead of two? I have never heard of anyone doing five straight days of IVIG-high dose or normal dose-and we are a monthly IVIG family. I would be concerned my dd would have a terrible reaction. Will it be done in the hospital?

 

I think more like a higher dose over 5 days - I read 2 kg a day instead of 1.5. (think I have those metrics right!) I think this doc usually uses a hospital, but we did first infusion at Dr. B's.

[laure]

Dd11 scheduled for second IVIG in one week. First IVIG 7 weeks ago yielded no result. (her symptoms are all neuro, all OCD) LLMD prescribing IVIG wants longer dose, 5 days of hdIVIG, as opposed to 2 days she received the first time. I am skeptical...about his knowledge of the use for lyme even...she only had slightly low IgG levels, so this was speculative treatment in the first place. Anyone have any experience/success with this? She has been aggressively treated for 2 years now, testing for lyme and babesia currently, had a CD57 of 50 2 months ago. Currently on Augmentin XR 2000mg 2 x a day, zithromycin, mepron, nystatin, tindamax, and lots of herbals. She has also tried IV rocephin, but only for one month, after no results docs wanted to stop. She currently cannot attend school, all contamination fears about school germs contaminating the home, and unfortunately now the home is mostly contaminated too.

Any input appreciated!

 

I have no real input, but i heard of a Dr(i dont' remember who, or who told me) that supposedly treats PANDAS by giving ivig for 5 days. But either gives a minimum of 4-8 treatments, (and sorry for being so vague, as i have tried to find out who this was to figure out the theory) and i want to say either does it every week in a row, or one every month...and supposedly believes this way is curative...IDK. I would love to find out who this is and talk to them.

I think you may need to really look at methylization to have better results with some protocals you my be attempting.

i wish i had more to offer, but maybe these open some other thoughts for you.

 

Currently we are usiing cholestyramine drink for detox, rentone for liver support, glutatione, B vitamins, fish oil, and a host of herbals, 5 antibiotics. Previously we used clay for detox, but our ART doc wants cholestyramine. We don't see a difference, but then again, she has been at a steady 10% for about 10 months now...so it doesn't really matter what we give her in terms of watching for a change.

[tpotter]

If it's the full dose over a 5 day period, I would be scared, because it can cause total proteins to elevate, and possibly cause increase in neuro symptoms (this is what a neurologist who knows PANDAS well explained to me. I would ask for more details.