Guest guest Posted October 15, 2011 Report Share Posted October 15, 2011 Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Very far from an expert here. But, yes, this matches up with what I've read. In PANDAS, antibodies (by attaching to an infected cell) have crossed the BBB and this creates an autoimmune reaction where the immune system gets confused (apparently similar to the molecular mimcry that happens in rheumatic fever) and it begins to attack the basal ganglia. So, you have to both reduce the growth/replication of the bacteria through antibiotics and also help the immune system to function appropriately/effectively. This can be even trickier to do in kids whose immune system is also compromised. On one hand you want to reduce inflammation and suppress the autoimmune reaction, and on the other, you need to support the immune system to do its job and kill the bacteria. If there is a recurrence of tics in the child, I would definitely contact your DAN or a doctor familiar with PANDAS and see if they can test him for strep (and other bacterias, like mycoplasma pneumonia). Also, antibiotics may be in order to help keep the bacteria at bay and avoid a flare up of symptoms.Here are some links to some very helpful websites. http://pandasnetwork.org/ http://www.webpediatrics.com/pandas.htmlThere are many other things you can give your son to help support his body, as well, including mito support, magnesium, good brain fats (omega 3's, MCToil) , neuroprotek, etc. I'd also get his thyroid and adrenals checked, as well.Best of luck, Ruth I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2011 Report Share Posted October 16, 2011 Yes I agree. Also not an expert, but this has been explained before that it's not the actual strep but the body's mixed up immune system misinterpreting and making antibodies. I *think* this is why the strep probiotics can possibly cause a problem, because otherwise it would seem impossible to trigger the PANDAS reaction, since they are two diff Streptococcus but when you have a confused immune system, anything is possible!  I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone-- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Yes, its the antibodies. But how do you stop the antibodies from attacking the basal ganglia? What changed the basal gangliaso much that now the antibodies "think" of it as a foreign body? Its the strep bacteria that hides inside the cells there. How tokill the root cause inside the cells? Its very high dose of vitamin C and/or A. On C the Trying_Low-Oxalate_Diet group says Cdegrades into oxalates and that is harmful. This group is against C above 200 mg.------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: karenhammes@...Date: Sun, 16 Oct 2011 09:36:38 -0700Subject: Re: PANDAS and tonsils I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Ratan,No one knows how to prevent this yet. From everything I understand, the strep can really be anywhere in the body- gut, tonsils, etc., and the antibodies happen to be circulating in the brain to cause the PANDAS exacerbation. The person who is likely to have the best explanation is a researcher named Madeline Cunningham at the university of Oklahoma. The links (I think it was Ruth) sent yesterday in response are really good ones to review. I am not aware that vitamin A or C can impact strep directly.Thanks,Sent from my iPhone Yes, its the antibodies. But how do you stop the antibodies from attacking the basal ganglia? What changed the basal gangliaso much that now the antibodies "think" of it as a foreign body? Its the strep bacteria that hides inside the cells there. How tokill the root cause inside the cells? Its very high dose of vitamin C and/or A. On C the Trying_Low-Oxalate_Diet group says Cdegrades into oxalates and that is harmful. This group is against C above 200 mg.------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: karenhammes@...Date: Sun, 16 Oct 2011 09:36:38 -0700Subject: Re: PANDAS and tonsils I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 I am not any pandas expert, just a mom, but I think strep expresses a protein on the outside of the cell that mimics or looks just like the protein found in the basal ganglia. So when the body finishes fighting off strep, it mistakes the basal ganglia for strep because the protein expressed on the outside of the cell looks so similar... something like that. If you go to the Autism Research Institute's website, www.autism.com, find the conference videos and search through them for a video on Pandas. Swedo is the name of the woman who knows the most about it. I am pretty sure there is a video dedicated to Pandas. The videos are free to watch and are mostly doctor presentations that are easily understood by parents. It is very informative. To: mb12valtrex Sent: Monday, October 17, 2011 9:27 AMSubject: RE: PANDAS and tonsils Yes, its the antibodies. But how do you stop the antibodies from attacking the basal ganglia? What changed the basal gangliaso much that now the antibodies "think" of it as a foreign body? Its the strep bacteria that hides inside the cells there. How tokill the root cause inside the cells? Its very high dose of vitamin C and/or A. On C the Trying_Low-Oxalate_Diet group says Cdegrades into oxalates and that is harmful. This group is against C above 200 mg.------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: karenhammes@...Date: Sun, 16 Oct 2011 09:36:38 -0700Subject: Re: PANDAS and tonsils I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Oh, one other comment. I don't think the basal ganglia has changed. It's our environment. Our bodies now have SO many different things to contend with it becomes more difficult for the body to distinguish self from non self. Again, I am not a doctor or a researcher, but this is my understanding from a lot of reading :)Hope it's helpful Sent from my iPhone Yes, its the antibodies. But how do you stop the antibodies from attacking the basal ganglia? What changed the basal gangliaso much that now the antibodies "think" of it as a foreign body? Its the strep bacteria that hides inside the cells there. How tokill the root cause inside the cells? Its very high dose of vitamin C and/or A. On C the Trying_Low-Oxalate_Diet group says Cdegrades into oxalates and that is harmful. This group is against C above 200 mg.------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: karenhammes@...Date: Sun, 16 Oct 2011 09:36:38 -0700Subject: Re: PANDAS and tonsils I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cellsspecially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. VitaminC as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of oxalates. In some studies they have used blood transfusion and got success in high per cent of cases.-------------Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@...- Certificate in Food & Nutrition; Diploma in Nutrition and Health Education; Life Member, Nutrition Soc. of India; Member ISOM- Author of "Nutrition & Supplements in Major Mental Illnesses";- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.;- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA);- www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealthTo: mb12valtrex From: jrcjrc05@...Date: Sat, 15 Oct 2011 16:40:50 +0000Subject: PANDAS and tonsils Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Interesting. I have never heard of Vitamin C helping wih strep and being antibacterial. After a search on Vitamin C, apparently it is antibacterial in addition to being antiviral. I also found this study: http://www.jbc.org/content/276/18/15125.full.pdf " Vitamin C Inhibits the Enzymatic Activity of Streptococcus pneumoniae Hyaluronate Lyase " Here is a quote: This is the first time that Vc (vitamin C) the direct inhibition on the bacterial " spreading factor " was reported, and Vc is also the first chemical that has been shown experimentally to have an inhibitory effect on bacterial hyaluronate lyase. I realise that this study is talking about Strep Pneumoniae (the one that causes ear infections, etc) rather that Strep A (the one associated with PANDAS), but I still find it intriguing that Vitamin C can inhibit the " spreading factor " of strep p. Maybe it has the same affect on Strep A. Interestingly, the first time my son had an OAT done, he had ZERO vitamin C. Zero! His doctor had never seen that before. Cathy > > > > > > > > > > > > > > > > > My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cells > specially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. > The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. Vitamin > C as shots or as liposomal formulation plus the " bowel tolerance dose " can be given for long but not very long because of risk of > oxalates. In some studies they have used blood transfusion and got success in high per cent of cases. > ------------- > Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@... > - Certificate in Food & Nutrition; Diploma in Nutrition and Health > Education; Life Member, Nutrition Soc. of India; Member ISOM > - Author of " Nutrition & Supplements in Major Mental Illnesses " ; > - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.; > - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA); > - www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealth > > To: mb12valtrex > From: jrcjrc05@... > Date: Sat, 15 Oct 2011 16:40:50 +0000 > Subject: PANDAS and tonsils > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. > > > > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Wow! Very cool Cathy!! Thanks so much for this.Sent from my iPhone Interesting. I have never heard of Vitamin C helping wih strep and being antibacterial. After a search on Vitamin C, apparently it is antibacterial in addition to being antiviral. I also found this study: http://www.jbc.org/content/276/18/15125.full.pdf "Vitamin C Inhibits the Enzymatic Activity of Streptococcus pneumoniae Hyaluronate Lyase" Here is a quote: This is the first time that Vc (vitamin C) the direct inhibition on the bacterial "spreading factor" was reported, and Vc is also the first chemical that has been shown experimentally to have an inhibitory effect on bacterial hyaluronate lyase. I realise that this study is talking about Strep Pneumoniae (the one that causes ear infections, etc) rather that Strep A (the one associated with PANDAS), but I still find it intriguing that Vitamin C can inhibit the "spreading factor" of strep p. Maybe it has the same affect on Strep A. Interestingly, the first time my son had an OAT done, he had ZERO vitamin C. Zero! His doctor had never seen that before. Cathy > > > > > > > > > > > > > > > > > My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cells > specially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. > The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. Vitamin > C as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of > oxalates. In some studies they have used blood transfusion and got success in high per cent of cases. > ------------- > Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@... > - Certificate in Food & Nutrition; Diploma in Nutrition and Health > Education; Life Member, Nutrition Soc. of India; Member ISOM > - Author of "Nutrition & Supplements in Major Mental Illnesses"; > - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.; > - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA); > - www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealth > > To: mb12valtrex > From: jrcjrc05@... > Date: Sat, 15 Oct 2011 16:40:50 +0000 > Subject: PANDAS and tonsils > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. > > > > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 The PANDAS theory is that it is automimme and that the immune system is mistakenly attacking our tissue. However, I am much more comfortable siding with my immune system than with any dr. If my immune system says the infectiom is there I am willing to believe it. Does my immune system overact? Maybe? But maybe it needs to because things are so crazy in my body? I believe it is much more likely that the drs are mistaken and there is an infection in my body that we have yet been able to dx and kill. > > >  > > > > > >My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cells > >specially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. > >The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. Vitamin > >C as shots or as liposomal formulation plus the " bowel tolerance dose " can be given for long but not very long because of risk of > >oxalates. In some studies they have used blood transfusion and got success in high per cent of cases. > >------------- > > > >Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@... > >- Certificate in Food & Nutrition; Diploma in Nutrition and Health > Education; Life Member, Nutrition Soc. of India; Member ISOM > >- Author of " Nutrition & Supplements in Major Mental Illnesses " ; > >- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.; > >- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA); > >- www.RegainMentalHealth.com/  www.jaipurmart.com/trade/meditationandhealth > > > > > > > >________________________________ > >To: mb12valtrex > >From: jrcjrc05@... > >Date: Sat, 15 Oct 2011 16:40:50 +0000 > >Subject: PANDAS and tonsils > > > > > >Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. > > > >Jen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Well I think the docs can diagnose some infections ( strep, Lyme, mycoplasma,etc). And those can cause a lot of probs without there being an autoimmune response. So there definitely are situations where a very active immune system ( & signs of inflammation etc) would be an appropriate response - even if the cause had not yet been found. Where the immune system goes wrong in PANDAS is that it isn't attacking the infection but rather has gotten confused & is attacking the basal ganglia. It is supposed to be able to distinguish between what is "self" and what is an invader. So it is more than it being overactive; it is attacking the very entity it is supposed to be protecting. (At least that is how I understand it.). RuthSent from my iPhone The PANDAS theory is that it is automimme and that the immune system is mistakenly attacking our tissue. However, I am much more comfortable siding with my immune system than with any dr. If my immune system says the infectiom is there I am willing to believe it. Does my immune system overact? Maybe? But maybe it needs to because things are so crazy in my body? I believe it is much more likely that the drs are mistaken and there is an infection in my body that we have yet been able to dx and kill. > > >  > > > > > >My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cells > >specially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. > >The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. Vitamin > >C as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of > >oxalates. In some studies they have used blood transfusion and got success in high per cent of cases. > >------------- > > > >Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@... > >- Certificate in Food & Nutrition; Diploma in Nutrition and Health > Education; Life Member, Nutrition Soc. of India; Member ISOM > >- Author of "Nutrition & Supplements in Major Mental Illnesses"; > >- M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.; > >- Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA); > >- www.RegainMentalHealth.com/  www.jaipurmart.com/trade/meditationandhealth > > > > > > > >________________________________ > >To: mb12valtrex > >From: jrcjrc05@... > >Date: Sat, 15 Oct 2011 16:40:50 +0000 > >Subject: PANDAS and tonsils > > > > > >Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. > > > >Jen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 I am not a scientist, just a mom, too. But from what I understand, looking at the biochemistry / metabolism " circles " in the books/websites,the body is trying to make glutathione and it is using up a lot of vitamin C to do that. Some people make oxalate when they take in too much vitamin C. That is going to be different for everyone.I think the theory on that is that the body uses what of the vitamin C it can to make glutathione and the left over stuff can or does become oxalate. So what has been recommended on the list is that people who want/need to supp vit c do so in small doses. Since we don'thave enough info on it, we don't know if 250mg / day or 250 mg/8 hrs is a reasonable recommendation. There are about two people on the LOD list that still take mega doses of vitamin C, one is Ratan. :-) We supp vit C occasionally as a gummy treat for the kids, but they also get it daily in about 50-100 mg amts from a Kyolic supp we use.We are using lots of b6 and magnesium right now... I want to see if that make my son's vit c go even lower.Not sure if making more glutathione with the additional B6 will cause the body to need more C or less?!!! Â Interesting. I have never heard of Vitamin C helping wih strep and being antibacterial. After a search on Vitamin C, apparently it is antibacterial in addition to being antiviral. I also found this study: http://www.jbc.org/content/276/18/15125.full.pdf " Vitamin C Inhibits the Enzymatic Activity of Streptococcus pneumoniae Hyaluronate Lyase " Here is a quote: This is the first time that Vc (vitamin C) the direct inhibition on the bacterial " spreading factor " was reported, and Vc is also the first chemical that has been shown experimentally to have an inhibitory effect on bacterial hyaluronate lyase. I realise that this study is talking about Strep Pneumoniae (the one that causes ear infections, etc) rather that Strep A (the one associated with PANDAS), but I still find it intriguing that Vitamin C can inhibit the " spreading factor " of strep p. Maybe it has the same affect on Strep A. Interestingly, the first time my son had an OAT done, he had ZERO vitamin C. Zero! His doctor had never seen that before. Cathy-- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 So Caryn, you would believe somehow the strep got inside the basal ganglia and left it's protein attached to the outside when it went in, and therefore the antibodies are over there attacking the basal ganglia because it knows strep is hiding inside? I like your theory. I like it a lot. Hmmm. Wish there was a way to see/prove it. Â The PANDAS theory is that it is automimme and that the immune system is mistakenly attacking our tissue. However, I am much more comfortable siding with my immune system than with any dr. If my immune system says the infectiom is there I am willing to believe it. Does my immune system overact? Maybe? But maybe it needs to because things are so crazy in my body? I believe it is much more likely that the drs are mistaken and there is an infection in my body that we have yet been able to dx and kill.-- Toni ------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 I love vitamin c. I swear by vitamin c. It was the very first biomedical intervention I used with my son. Mostly because it is required for the balanced production of neurotransmitters, it is antiviral and antibacterial and relatively safe. It worked wonders. Within two weeks, I went from having a kid who was having multiple melt-downs a day to a (relatively) happy boy. (Most of the time). It probably took a good 6 months of c, epsom, theanine and b's to get him back on track to being himself. But I attribute that first major jump to vitamin c. I suspect oxalates could be an issue for my little guy, so on a daily basis, I'll use c0q10. But if something has me concerned amd there's something specific I want to target, I'll use the C.To: mb12valtrex Sent: Monday, October 17, 2011 2:11 PMSubject: Re: PANDAS and tonsils Interesting. I have never heard of Vitamin C helping wih strep and being antibacterial. After a search on Vitamin C, apparently it is antibacterial in addition to being antiviral. I also found this study: http://www.jbc.org/content/276/18/15125.full.pdf "Vitamin C Inhibits the Enzymatic Activity of Streptococcus pneumoniae Hyaluronate Lyase" Here is a quote: This is the first time that Vc (vitamin C) the direct inhibition on the bacterial "spreading factor" was reported, and Vc is also the first chemical that has been shown experimentally to have an inhibitory effect on bacterial hyaluronate lyase. I realise that this study is talking about Strep Pneumoniae (the one that causes ear infections, etc) rather that Strep A (the one associated with PANDAS), but I still find it intriguing that Vitamin C can inhibit the "spreading factor" of strep p. Maybe it has the same affect on Strep A. Interestingly, the first time my son had an OAT done, he had ZERO vitamin C. Zero! His doctor had never seen that before. Cathy > > > > > > > > > > > > > > > > > My understanding is that once OCD sets in, its a sign that the strep bacteria have invaded the brain and settled in certain brain cells > specially hiding inside amygdala cells. You need glutathione and super high doses of vitamin C and A for few days to flush them out. > The glutathione precursors can continue for ever but A can't. Vitamin A in super high dose is given only for two or three days. Vitamin > C as shots or as liposomal formulation plus the "bowel tolerance dose" can be given for long but not very long because of risk of > oxalates. In some studies they have used blood transfusion and got success in high per cent of cases. > ------------- > Ratan Singh, Phone: 91 141 2652561, mail: ratanpsych@... > - Certificate in Food & Nutrition; Diploma in Nutrition and Health > Education; Life Member, Nutrition Soc. of India; Member ISOM > - Author of "Nutrition & Supplements in Major Mental Illnesses"; > - M.A. (Psychol), Postgraduate Diploma in Medical & Social Psychology, Ph.D.; > - Certified Behavior Therapist (from late Prof. J. Wolpe's Unit, Temple Univ Med School, USA); > - www.RegainMentalHealth.com/ www.jaipurmart.com/trade/meditationandhealth > > To: mb12valtrex > From: jrcjrc05@... > Date: Sat, 15 Oct 2011 16:40:50 +0000 > Subject: PANDAS and tonsils > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Last year my son had recurrent Strep infections. The OCD, tics and anxiety started after the first infection. He was diagnosed with PANDAS and we did treatments with no positive results. He eventually had his tonsils and adenoids removed because they were chronically infected. Within the week his tics and OCD were gone, now 5mts later we are starting to see the tic return. Can PANDAS return if there are no tonsils to harbor the strep bacteria? It's very subtle right but I'm so scared that we might be right back where we started. Thanks for every ones input. > > > > Jen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 I don't know that it is always strep, but look at the location of the basal ganglia. It is certainly reasonable that a pathogen in the throat, ears , sinuses, or tonsils made its' new home the basal ganglia. To me, it seems far more plausable that the drs are wrong and the immune system is right. The simple solution is usually correct. Caryn > > > ** > > > > > > The PANDAS theory is that it is automimme and that the immune system is > > mistakenly attacking our tissue. However, I am much more comfortable siding > > with my immune system than with any dr. If my immune system says the > > infectiom is there I am willing to believe it. Does my immune system > > overact? Maybe? But maybe it needs to because things are so crazy in my > > body? > > > > I believe it is much more likely that the drs are mistaken and there is an > > infection in my body that we have yet been able to dx and kill. > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 "like" To: mb12valtrex Sent: Tuesday, October 18, 2011 8:42 AMSubject: Re: PANDAS and tonsils I don't know that it is always strep, but look at the location of the basal ganglia. It is certainly reasonable that a pathogen in the throat, ears , sinuses, or tonsils made its' new home the basal ganglia. To me, it seems far more plausable that the drs are wrong and the immune system is right. The simple solution is usually correct.Caryn> > > **> >> >> > The PANDAS theory is that it is automimme and that the immune system is> > mistakenly attacking our tissue. However, I am much more comfortable siding> > with my immune system than with any dr. If my immune system says the> > infectiom is there I am willing to believe it. Does my immune system> > overact? Maybe? But maybe it needs to because things are so crazy in my> > body?> >> > I believe it is much more likely that the drs are mistaken and there is an> > infection in my body that we have yet been able to dx and kill.> >> >> -- > Toni> > ------> Mind like a steel trap...> Rusty and illegal in 37 states.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 But wouldn't it still just attack the pathogen? Or is it that the immune system in the brain is not that sophisticated ( hence the BBB)?Sent from my iPhone I don't know that it is always strep, but look at the location of the basal ganglia. It is certainly reasonable that a pathogen in the throat, ears , sinuses, or tonsils made its' new home the basal ganglia. To me, it seems far more plausable that the drs are wrong and the immune system is right. The simple solution is usually correct. Caryn > > > ** > > > > > > The PANDAS theory is that it is automimme and that the immune system is > > mistakenly attacking our tissue. However, I am much more comfortable siding > > with my immune system than with any dr. If my immune system says the > > infectiom is there I am willing to believe it. Does my immune system > > overact? Maybe? But maybe it needs to because things are so crazy in my > > body? > > > > I believe it is much more likely that the drs are mistaken and there is an > > infection in my body that we have yet been able to dx and kill. > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 When you have an infection in any organ it becomes inflammed. That is part of the immune system strategy to contain the pathogen from spreading. > > > > > > > ** > > > > > > > > > > > > The PANDAS theory is that it is automimme and that the immune system is > > > > mistakenly attacking our tissue. However, I am much more comfortable siding > > > > with my immune system than with any dr. If my immune system says the > > > > infectiom is there I am willing to believe it. Does my immune system > > > > overact? Maybe? But maybe it needs to because things are so crazy in my > > > > body? > > > > > > > > I believe it is much more likely that the drs are mistaken and there is an > > > > infection in my body that we have yet been able to dx and kill. > > > > > > > > > > > -- > > > Toni > > > > > > ------ > > > Mind like a steel trap... > > > Rusty and illegal in 37 states. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Very interesting thought!Sent from my iPhone I don't know that it is always strep, but look at the location of the basal ganglia. It is certainly reasonable that a pathogen in the throat, ears , sinuses, or tonsils made its' new home the basal ganglia. To me, it seems far more plausable that the drs are wrong and the immune system is right. The simple solution is usually correct. Caryn > > > ** > > > > > > The PANDAS theory is that it is automimme and that the immune system is > > mistakenly attacking our tissue. However, I am much more comfortable siding > > with my immune system than with any dr. If my immune system says the > > infectiom is there I am willing to believe it. Does my immune system > > overact? Maybe? But maybe it needs to because things are so crazy in my > > body? > > > > I believe it is much more likely that the drs are mistaken and there is an > > infection in my body that we have yet been able to dx and kill. > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2011 Report Share Posted November 5, 2011 yeah I think its some of both you get strep that the body can't rid of, a lot of our PANDAS kids have cronic strep in their tonsils (families report this when they remove it) or they have cronic gamma strep in the gut unaddressed and don't know it (I have YET to see a family with gamma in the 2+ or less that has a PANDAS dx....put calls out on several boards and not ONE reporting PANDAS WITH OUT having high levels on stool tests SHOWING FIRST) and then the body is in over drive and goes autoimmune. infact when I see families reporting 2+-4+ on gamma I start incouraging them to look at testing and sudeenly their child makes sence. I think this is ALSO why we see prophatic antibiotics being successful as well as IVIG working....its addresssing the hidden strep. it may also be in biofilms messing with things From: Toni Marie Lombardo Sent: Sunday, October 16, 2011 7:03 PM To: mb12valtrex Subject: Re: PANDAS and tonsils Yes I agree. Also not an expert, but this has been explained before that it's not the actual strep but the body's mixed up immune system misinterpreting and making antibodies. I *think* this is why the strep probiotics can possibly cause a problem, because otherwise it would seem impossible to trigger the PANDAS reaction, since they are two diff Streptococcus but when you have a confused immune system, anything is possible! I do not think the actual strep is the issue. It's the body's creation of antibodies to strep and the body's misinterpretation of the immune response that impairs the basal ganglia. PANDAS experts please respond. Sent from my iPhone-- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
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