IVIg for PANDAS 7 days ago, almost no improvment, what next?

[EMT2000]

Itching makes me think that parasites could be involved. I'm not sure how to test for these. My daughter had itching and our LLMD diagnosed her clinically with parasites. She did a 2 month parasite protocol and the itching stopped.

 

Can anyone chime in on how to test for parasites?

 

 

Us too, and way way back we had the standard parasite test done the hospital ordered; negative of course. Then working with Dr. Jerry Kartzinel (CA) he had a complete GI work up done via Metametix (450$)and he came back positive for 'unknown parasites' so he was treated with Alinia but still tested pos again on that same test - which couldn't tell what exactly it was...so Dr.Jerry found The Parasitolgy Center in Scottsdale, AZ and all they do is Parasite testing, etc. they said they would totally be able to tell us what it was, but he has to be off antibiotics for 10days!! I have no idea when that will happen, and our PA NDAS Dr doesn't think that's what is causing the itch, it was such an overnight sudden onset and he was pos for Strep....So we are just doing nothing about the supposed parasites right now, which also really bothers us.

[sf_mom]

Us too, and way way back we had the standard parasite test done the hospital ordered; negative of course. Then working with Dr. Jerry Kartzinel (CA) he had a complete GI work up done via Metametix (450$)and he came back positive for 'unknown parasites' so he was treated with Alinia but still tested pos again on that same test - which couldn't tell what exactly it was...so Dr.Jerry found The Parasitolgy Center in Scottsdale, AZ and all they do is Parasite testing, etc. they said they would totally be able to tell us what it was, but he has to be off antibiotics for 10days!! I have no idea when that will happen, and our PA NDAS Dr doesn't think that's what is causing the itch, it was such an overnight sudden onset and he was pos for Strep....So we are just doing nothing about the supposed parasites right now, which also really bothers us.

 

 

We initially did 3 hdIVIGs for PANDAS with older DS. Six months post his last treatment he had rectal bleeding for over 8 weeks and we pursued an integrative LLMD in Northern CA to further investigate issue. We also found an 'unknown' parasite via Metametix, rectal bleeding stopped within 48 hours of starting Alinia but our son stayed on Alinia for another 5 1/2 months to treat. He also had itching as symptom. I would continue to pursue the "unknown" parasite. There are plenty of herbal treatments for parasites if your Dr. will not prescribed like Para-A, Para Comp and Healthforce parasite cleanse, etc.

[EMT2000]

Thank you both so much for the positive words. It is SO helpful to hear that other families didn't see immediate results, but did see positives in time. So many stories that I have read over the last 9 months where parents see immediate and dramatic changes from IVIg in 2 days, in 4 days, etc., it is just scary not to see him get any relief, just getting worse.

BeesKnees - I hope that you are free from strep and that the IVIg process goes super smooth and is very successful for your child, just like Nicklemama's child had positive results over time.

After I posted I did read on Dr. K's website that in children over age 10 IVIg is often times a much slower fix than with children under age 10. I hadn't heard that kids get worse before they get better, but if thats how some of them go; wow,we are in that catagory! Today was just horrible, in fact we are going back in to test for another Strep infection day after tomorrow just in case the 'on button' has been pushed yet again.

Dad has been on either Augmentin or Clindamycin non-stop since April just like our son, but there was 1 week in there that he backed off and whamo - they both tested pos for Strep. It's maddening. My thanks to both of you for the boost in my spirits, it's huge when you are having a hard time seeing the light at the end of the tunnel.

 

 

yes, my dd has had 3 HD IVIG's and each time the first week (or 2) after is rough...then things slowly start to get better.

 

Have you tried quecetin for the itching?

 

When did the itching start?

 

Could the itching be related to some kind of a food allergy?

 

 

Oh, sorry to ask a silly question; but what is "HD IVIg"?

Thanks for indulging me~

[Mayzoo]

Does dad still have his tonsils? Maybe strep is hiding in there if he does?

[Mayzoo]

 

Oh, sorry to ask a silly question; but what is "HD IVIg"?

Thanks for indulging me~

 

 

HD= High Dose

 

IVIG= Intravenous immunoglobulin

[EMT2000]

 

Oh, sorry to ask a silly question; but what is "HD IVIg"?

Thanks for indulging me~

 

 

HD= High Dose

 

IVIG= Intravenous immunoglobulin

Thanks, didn't know the 'high dose' acronym!

[EMT2000]

Us too, and way way back we had the standard parasite test done the hospital ordered; negative of course. Then working with Dr. Jerry Kartzinel (CA) he had a complete GI work up done via Metametix (450$)and he came back positive for 'unknown parasites' so he was treated with Alinia but still tested pos again on that same test - which couldn't tell what exactly it was...so Dr.Jerry found The Parasitolgy Center in Scottsdale, AZ and all they do is Parasite testing, etc. they said they would totally be able to tell us what it was, but he has to be off antibiotics for 10days!! I have no idea when that will happen, and our PA NDAS Dr doesn't think that's what is causing the itch, it was such an overnight sudden onset and he was pos for Strep....So we are just doing nothing about the supposed parasites right now, which also really bothers us.

 

 

We initially did 3 hdIVIGs for PANDAS with older DS. Six months post his last treatment he had rectal bleeding for over 8 weeks and we pursued an integrative LLMD in Northern CA to further investigate issue. We also found an 'unknown' parasite via Metametix, rectal bleeding stopped within 48 hours of starting Alinia but our son stayed on Alinia for another 5 1/2 months to treat. He also had itching as symptom. I would continue to pursue the "unknown" parasite. There are plenty of herbal treatments for parasites if your Dr. will not prescribed like Para-A, Para Comp and Healthforce parasite cleanse, etc.

 

Can you share with me the nature of the itching: was it all over his body or localized in the 'typical' area? We decided to do another test with Parasitology Center even though he's on antibiotics to see if we can get more information. Really appreciate the rec's for the herbal treatments as well.

[sf_mom]

The itching was often on DS back but would migrate to different areas and mostly peeked at bedtime. We did tons of detox with our son that seemed to help with symptoms. Our LLMD was some what suspicious of 'unknown' parasite as it is often found in comprehensive stool analysis with those that also have Babesia. It is an inner red blood cell parasite and because we had rectal bleeding at time, it made sense he had a positive stool analysis. Some think nail, cuticle biting or picking is another indication of parasites. Also check to see if your child's symptoms increase during full moon cycle. It is my understanding full moon is typically when parasite eggs hatch causing additional symptoms. http://www.thenutritionalhealingcenter.com/parasites/

 

I should mention my husband was also positive for two different parasites and it took us over a year to deal with those. We did use antibiotics (several rounds), herbals and MSM to treat continually throughout the year. We think we have resolution but plan to retreat about every six months and are continuing with MSM supplementation (5,000 m.g. per day). He had acid reflux (regularly), lower intestinal or prostrate pain (every couple months that often would keep him up at night). His symptoms have resolved.

 

MSM is natural sulphur. Our entire family made huge improvements with this particular supplement. MSM is suppose to be fantastic at treating nematodes which is a round worm. MSM will cause a 'herx' like response so best to start at lower dose if you try it and increase slowly. Our older son who is 8 years old started at 500 m.g. and we have increased dose slowly over months. He now takes 2000 m.g. daily in the morning. Whole Foods carries Jarrow Brand MSM (Opti-MSM) in both powder and capsule with no additive. Here is the information on MSM. http://www.msm-info.com/

 

It will be interesting to find out what the Parasitology Center finds for your child.

Edited September 8, 2012 by SF Mom

[SSS]

Itching makes me think that parasites could be involved. I'm not sure how to test for these. My daughter had itching and our LLMD diagnosed her clinically with parasites. She did a 2 month parasite protocol and the itching stopped.

 

Can anyone chime in on how to test for parasites?

 

 

Us too, and way way back we had the standard parasite test done the hospital ordered; negative of course. Then working with Dr. Jerry Kartzinel (CA) he had a complete GI work up done via Metametix (450$)and he came back positive for 'unknown parasites' so he was treated with Alinia but still tested pos again on that same test - which couldn't tell what exactly it was...so Dr.Jerry found The Parasitolgy Center in Scottsdale, AZ and all they do is Parasite testing, etc. they said they would totally be able to tell us what it was, but he has to be off antibiotics for 10days!! I have no idea when that will happen, and our PA NDAS Dr doesn't think that's what is causing the itch, it was such an overnight sudden onset and he was pos for Strep....So we are just doing nothing about the supposed parasites right now, which also really bothers us.

 

 

*Is Dr. Jerry your treating PANDAS Dr.? He was my daughters before we found Lyme.

Also had the metametrix stool test done with positive 'parasite unknown' and we got a script for Flagyl, but never retested.

It can take a long time to treat parasites, rotating different parasite killers, IMO.