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jakio
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Hi,

I read in one of the postings that Dr Goldberg in california was able to diagnose PANDAS. does anyone know which city in Ca.???? does anyone knows anything about him/her???

Thank you so much to all for all answers

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Hi,

I read in one of the postings that Dr Goldberg in california was able to diagnose PANDAS. does anyone know which city in Ca.???? does anyone knows anything about him/her???

Thank you so much to all for all answers

 

 

I don't remember which city, but I think he's near LA. Dr. Goldberg is famous for treating autism with antiviral meds. He believes that autism is caused by Herpes 6 infection, so he uses long duration Valtrex. Many kids have improved or recovered from this therapy. I think he has labeled it NIDS (don't recall what that stands for, but you can probably google it.) I've never heard of him doing anything with PANDAS, but it's possible.

 

Paula

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Yes he does treat PANDAS with antivirals. Its neuroimmune science Hes on the internet. One interesting thing is someone recently posted a concern over ivig ( on this forum)and retro viruses and they linked up a study about autism and chronic fatigue syndrome and a virus that is in T and B cells??? Anyway, Dr. Goldberg started his quest years ago because his wife got chronic fatigue syndrome. Anyway I found it very interesting that Goldberg has a thirty percent success rate with antivirals and autism. It actually does seem to correlate with the study where 40 percent of the kids with autism tested had this varient T/B cell virus. (This study is brand new and Goldbergs success rate is years old) In addition the study said that this may explain vaccines exaserbating symptoms because they actually increase the immune response therfore increasing the virus in the immune system. One more strange thing, IVIG seems to not helps tics as much as PEX. At least according to Swedo small study. PEX removes all the immune cells. My daughter recently got the flu and I hestitated to use TAMIFLU however with her PIDD I felt I had no option. TAMIFLU causes anxiety and kids with neuropsych are warned against its side effects. My daughter has had severe constant tics after a horrible attack in May. After I gave her TAMIFLU her tics stopped completely. She does not have autism. Also that indian herb clerodendrum is an antiviral and it stopped chronic tics in a long time sufferer. If you do contact Dr. Goldberg I would be very interested to know if he can test for this new immune cell retro viruses that hides out in B and T cells.

 

Thanks

 

 

 

 

 

Let

Hi,

I read in one of the postings that Dr Goldberg in california was able to diagnose PANDAS. does anyone know which city in Ca.???? does anyone knows anything about him/her???

Thank you so much to all for all answers

 

 

I don't remember which city, but I think he's near LA. Dr. Goldberg is famous for treating autism with antiviral meds. He believes that autism is caused by Herpes 6 infection, so he uses long duration Valtrex. Many kids have improved or recovered from this therapy. I think he has labeled it NIDS (don't recall what that stands for, but you can probably google it.) I've never heard of him doing anything with PANDAS, but it's possible.

 

Paula

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nevergiveup,

Hi, how long did your child have tics for and what were they? You said the TAMIFLU stopped your child's tics??? Does she have any now? Is she still taking the TAMIFLU? Very Interesting?? I am happy to hear your child's tics stopped? The IVIG did not help your child's tics but helped the OCD? Why do you think the TAMIFLU helped? Char..

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Hi Char, my daughter had multiple facial and head tics some hand from May 6th on. She woke up on May 6th and said oh my gosh mom its back. She had been diagnosed with SC at age 9, later doctor decided it was TS. Went into complete remmission for 16 months and woke up May 6 with chorea, cognitive fog, ADHD. She had IVIG in about a week. She still had funny longer tics after IVIG they seemed to get less and less over 4 months, but still chronic and daily. OCD completely gone. She says she has never felt better. She got the flu last week had terrible tics day before fever actually had terrible tics when her fever started spiking to 102 within the hour. Ped gave me tamiflu ( took drug within first 8 hours of fever and with two hours no fever and No tics. We would see a few right before her next dose but they would disappear within the hour after the dose. Listen this drug is not great for kids I would never had used it if my daughter didn't have an immune def. But it is interesting though. Why did it stop her tics, i can only speculate either 1.). She has some intracellular virus and the tamiflu does the same to viruses as antibiotics do for strep. 2). The flu rebooted her immune system, I have several doctors in the family whom have seen viruses like the chicken pox or others that have rebooted the immune system and put luekemia in remission or other illnesses. (Very rare but it has happened ). Or. 3.) Total coincidence. Can't ever rule this out with tics. 4) Tamiflu increased the BBB. ? I doubt this though because studies show tamiflu does get into your brain.

However I would like to find out about olive leaf extract apparently it is used as an antiviral and autistic kids have seen improvement from this? Know of anyone who has had success with high dose antiviral and tics? I am assuming dosage is key since tamiflu is pretty strong stuff. So if you have any insight into dosing I may try it.

 

 

and quote name='Char' date='Oct 19 2009, 02:42 PM' post='41615']

nevergiveup,

Hi, how long did your child have tics for and what were they? You said the TAMIFLU stopped your child's tics??? Does she have any now? Is she still taking the TAMIFLU? Very Interesting?? I am happy to hear your child's tics stopped? The IVIG did not help your child's tics but helped the OCD? Why do you think the TAMIFLU helped? Char..

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Hi,

 

I'm the one who posted about the discovery of the new retro virus found in CFS and autism. I find this discussion very interesting because I have always felt that my kids' immune system issues resemble the lab findings found in AIDS...like an aquired immune defecit. Also, my son has an IgG1 subclass deficiency which is commonly found in...you guessed it, CFS. When my son gets a fever, his issues disappear completely leaving him completely normal. This makes me feel that the fever is temporarily knocking down a chronic viral issue. After the fever passes, and with any other type of immune system activation, he develops drunken and temperamental behaviors. I am very interested to learn where we can get tested for this new virus (XMRV). Does anyone know if Dr. Goldberg is testing for it?

 

Paula

 

Hi Char, my daughter had multiple facial and head tics some hand from May 6th on. She woke up on May 6th and said oh my gosh mom its back. She had been diagnosed with SC at age 9, later doctor decided it was TS. Went into complete remmission for 16 months and woke up May 6 with chorea, cognitive fog, ADHD. She had IVIG in about a week. She still had funny longer tics after IVIG they seemed to get less and less over 4 months, but still chronic and daily. OCD completely gone. She says she has never felt better. She got the flu last week had terrible tics day before fever actually had terrible tics when her fever started spiking to 102 within the hour. Ped gave me tamiflu ( took drug within first 8 hours of fever and with two hours no fever and No tics. We would see a few right before her next dose but they would disappear within the hour after the dose. Listen this drug is not great for kids I would never had used it if my daughter didn't have an immune def. But it is interesting though. Why did it stop her tics, i can only speculate either 1.). She has some intracellular virus and the tamiflu does the same to viruses as antibiotics do for strep. 2). The flu rebooted her immune system, I have several doctors in the family whom have seen viruses like the chicken pox or others that have rebooted the immune system and put luekemia in remission or other illnesses. (Very rare but it has happened ). Or. 3.) Total coincidence. Can't ever rule this out with tics. 4) Tamiflu increased the BBB. ? I doubt this though because studies show tamiflu does get into your brain.

However I would like to find out about olive leaf extract apparently it is used as an antiviral and autistic kids have seen improvement from this? Know of anyone who has had success with high dose antiviral and tics? I am assuming dosage is key since tamiflu is pretty strong stuff. So if you have any insight into dosing I may try it.

 

 

and quote name='Char' date='Oct 19 2009, 02:42 PM' post='41615']

nevergiveup,

Hi, how long did your child have tics for and what were they? You said the TAMIFLU stopped your child's tics??? Does she have any now? Is she still taking the TAMIFLU? Very Interesting?? I am happy to hear your child's tics stopped? The IVIG did not help your child's tics but helped the OCD? Why do you think the TAMIFLU helped? Char..

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Paula, we too have noticed that when dd gets a fever, symptoms completely disappear. Her IGG1 level is also very low. I would love to learn more. I am now wondering if anti-fungals can play an equal role with abx/ivig/pex in treating this monster.

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I just found this lab where you can test for XMRV virus. It's a little pricey at $399. http://www.codiagnostics.com/XMRV/index2.php

 

Any thoughts?

 

Paula

 

 

 

 

 

 

 

Hi,

 

I'm the one who posted about the discovery of the new retro virus found in CFS and autism. I find this discussion very interesting because I have always felt that my kids' immune system issues resemble the lab findings found in AIDS...like an aquired immune defecit. Also, my son has an IgG1 subclass deficiency which is commonly found in...you guessed it, CFS. When my son gets a fever, his issues disappear completely leaving him completely normal. This makes me feel that the fever is temporarily knocking down a chronic viral issue. After the fever passes, and with any other type of immune system activation, he develops drunken and temperamental behaviors. I am very interested to learn where we can get tested for this new virus (XMRV). Does anyone know if Dr. Goldberg is testing for it?

 

Paula

 

Hi Char, my daughter had multiple facial and head tics some hand from May 6th on. She woke up on May 6th and said oh my gosh mom its back. She had been diagnosed with SC at age 9, later doctor decided it was TS. Went into complete remmission for 16 months and woke up May 6 with chorea, cognitive fog, ADHD. She had IVIG in about a week. She still had funny longer tics after IVIG they seemed to get less and less over 4 months, but still chronic and daily. OCD completely gone. She says she has never felt better. She got the flu last week had terrible tics day before fever actually had terrible tics when her fever started spiking to 102 within the hour. Ped gave me tamiflu ( took drug within first 8 hours of fever and with two hours no fever and No tics. We would see a few right before her next dose but they would disappear within the hour after the dose. Listen this drug is not great for kids I would never had used it if my daughter didn't have an immune def. But it is interesting though. Why did it stop her tics, i can only speculate either 1.). She has some intracellular virus and the tamiflu does the same to viruses as antibiotics do for strep. 2). The flu rebooted her immune system, I have several doctors in the family whom have seen viruses like the chicken pox or others that have rebooted the immune system and put luekemia in remission or other illnesses. (Very rare but it has happened ). Or. 3.) Total coincidence. Can't ever rule this out with tics. 4) Tamiflu increased the BBB. ? I doubt this though because studies show tamiflu does get into your brain.

However I would like to find out about olive leaf extract apparently it is used as an antiviral and autistic kids have seen improvement from this? Know of anyone who has had success with high dose antiviral and tics? I am assuming dosage is key since tamiflu is pretty strong stuff. So if you have any insight into dosing I may try it.

 

 

and quote name='Char' date='Oct 19 2009, 02:42 PM' post='41615']

nevergiveup,

Hi, how long did your child have tics for and what were they? You said the TAMIFLU stopped your child's tics??? Does she have any now? Is she still taking the TAMIFLU? Very Interesting?? I am happy to hear your child's tics stopped? The IVIG did not help your child's tics but helped the OCD? Why do you think the TAMIFLU helped? Char..

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Hi,

I read in one of the postings that Dr Goldberg in california was able to diagnose PANDAS. does anyone know which city in Ca.???? does anyone knows anything about him/her???

Thank you so much to all for all answers

Michael J. Goldberg, Cedars Sinai

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