Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 Roseann I been saying this over and over again. PANS also includes Lyme co infections. It was discussed finally at the NYC conf a few weeks ago. But I felt for years, there was a direct connect, especially dealing with my son, and seeing many other children had the same thing. DR B was at the NYC conf but did not discuss PANS, but more the GcMAF treatment and SC therapy. Its worthy to look into to the lyme treatments, if you are still seeing issues in your child, and just so you know the testing at times is not always conclusive. Also include, lab corp CD57/ CD58 Allie > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but could this be the name for it? I find this very validating personally, my child after all the cutting edge autism treatments really doesn't fit that diagnosis anymore but is far from healthy. > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-int\ roducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > thoughts? > > Roseann > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 yes allie, we continue to treat. we see dr A. who was also in NYC. wish I could have gone especially since I am now in NY, but eventually you just can't afford the conferences anymore and need to spend $ on treatment, especially doing this now as a single parent. having this group + dr. A allows me to do that. we will certainly have dr. A test the KGcMAF, i don't think she had the samples for testing at our last appt. does anyone know if she has by now? i am really liking what I am seeing with the Immusist. are you considering the GcMAF for your son? roseann Re: DR B. on PANS Roseann I been saying this over and over again. PANS also includes Lyme co infections. It was discussed finally at the NYC conf a few weeks ago. But I felt for years, there was a direct connect, especially dealing with my son, and seeing many other children had the same thing. DR B was at the NYC conf but did not discuss PANS, but more the GcMAF treatment and SC therapy. Its worthy to look into to the lyme treatments, if you are still seeing issues in your child, and just so you know the testing at times is not always conclusive. Also include, lab corp CD57/ CD58 Allie > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but could this be the name for it? I find this very validating personally, my child after all the cutting edge autism treatments really doesn't fit that diagnosis anymore but is far from healthy. > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > thoughts? > > Roseann > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 Is there a reliable test for PANS? I had my son's blood work sent to the university of Oklahoma for PANDAS and they told me they are no longer accepting specimens. I talked to the head researcher and she told me within the next year or to they will be releasing a commercial test for PANDAS.The doctor said she believes PANDAS (or PANS) is defiantly involved in autism because they see a ton of kids who display repetitive behaviors and have social issues.She believes IGG therapy is the way to go.I think PANS is a huge issue with our kids and would love to get my son tested but don't know where until this test comes outTo: BorreliaMultipleInfectionsAndAutism From: rsherry1969@...Date: Wed, 7 Mar 2012 11:07:03 -0500Subject: Re: Re: DR B. on PANS yes allie, we continue to treat. we see dr A. who was also in NYC. wish I could have gone especially since I am now in NY, but eventually you just can't afford the conferences anymore and need to spend $ on treatment, especially doing this now as a single parent. having this group + dr. A allows me to do that. we will certainly have dr. A test the KGcMAF, i don't think she had the samples for testing at our last appt. does anyone know if she has by now? i am really liking what I am seeing with the Immusist. are you considering the GcMAF for your son? roseann -----Original Message----- From: heal1child To: BorreliaMultipleInfectionsAndAutism <BorreliaMultipleInfectionsAndAutism > Sent: Wed, Mar 7, 2012 10:48 am Subject: Re: DR B. on PANS Roseann I been saying this over and over again. PANS also includes Lyme co infections. It was discussed finally at the NYC conf a few weeks ago. But I felt for years, there was a direct connect, especially dealing with my son, and seeing many other children had the same thing. DR B was at the NYC conf but did not discuss PANS, but more the GcMAF treatment and SC therapy. Its worthy to look into to the lyme treatments, if you are still seeing issues in your child, and just so you know the testing at times is not always conclusive. Also include, lab corp CD57/ CD58 Allie --- In BorreliaMultipleInfectionsAndAutism , rsherry1969 wrote: > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but could this be the name for it? I find this very validating personally, my child after all the cutting edge autism treatments really doesn't fit that diagnosis anymore but is far from healthy. > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > thoughts? > > Roseann > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 If we are talking about the same Dr. A, she now does test for GcMAF. She tested my kids for it a few weeks ago and said it was not an issue for my kids. But as mentioned in a previous post, my kids do have co infections of Bart and Babesia and OCD is something we have dealt with all along this journey. We just recently started Immusist as well are seeing nice things with it, but we definitely are going very slow with it. It is powerful stuff. I’m even taking it per Dr. A and I can’t get past 2 drops 2x daily without getting die off reactions! yes allie, we continue to treat. we see dr A. who was also in NYC. wish I could have gone especially since I am now in NY, but eventually you just can't afford the conferences anymore and need to spend $ on treatment, especially doing this now as a single parent. having this group + dr. A allows me to do that. we will certainly have dr. A test the KGcMAF, i don't think she had the samples for testing at our last appt. does anyone know if she has by now? i am really liking what I am seeing with the Immusist. are you considering the GcMAF for your son? roseann Re: DR B. on PANS Roseann I been saying this over and over again. PANS also includes Lyme co infections. It was discussed finally at the NYC conf a few weeks ago. But I felt for years, there was a direct connect, especially dealing with my son, and seeing many other children had the same thing. DR B was at the NYC conf but did not discuss PANS, but more the GcMAF treatment and SC therapy. Its worthy to look into to the lyme treatments, if you are still seeing issues in your child, and just so you know the testing at times is not always conclusive. Also include, lab corp CD57/ CD58 Allie > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but could this be the name for it? I find this very validating personally, my child after all the cutting edge autism treatments really doesn't fit that diagnosis anymore but is far from healthy. > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > thoughts? > > Roseann > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 great andrea! us too! i made the mistake of starting with 5 drops a day...HA! not pretty!!! I took a break for a few weeks and am now doing 1 drop every other day...I'm happy with that for now. I will have Dr. A test the KGcMAF at our next appointment, thank for letting me know. I have a good feeling about this one for us. Roseann Re: DR B. on PANS Roseann I been saying this over and over again. PANS also includes Lyme co infections. It was discussed finally at the NYC conf a few weeks ago. But I felt for years, there was a direct connect, especially dealing with my son, and seeing many other children had the same thing. DR B was at the NYC conf but did not discuss PANS, but more the GcMAF treatment and SC therapy. Its worthy to look into to the lyme treatments, if you are still seeing issues in your child, and just so you know the testing at times is not always conclusive. Also include, lab corp CD57/ CD58 Allie > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but could this be the name for it? I find this very validating personally, my child after all the cutting edge autism treatments really doesn't fit that diagnosis anymore but is far from healthy. > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > thoughts? > > Roseann > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 Roseann I know the conf. was a huge expensive and way over priced. It was the most expensive conf that I have ever attended, and was sadly disappointed in many aspects. Some just the fact the hotel was a sick hotel and had something that made me too sick to be in the building for any length of time. I had to get outside a lot to get fresh air. I was hoping to get the best out of seeing all the DR's speak - because I cannot afford to see all these DR's and was surprised that many parents have 3-6 DR's they are taking their children to. Which we cannnot afford, much less all the traveling costs. That is why I shared my notes with the group a few weeks ago, as I know others could not attend. The biggest take away info was EMF, which has been discussed a lot already on this group. And GcMAF. I have tested my son, and went on to start treating him, with the homeopathic, and it is too soon to get excited but I think I have noticed some changes even doing a wk's of homeopathic drops. Will post if I see more results in the months to come. HTH's Allie > > > > > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those > maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but > could this be the name for it? I find this very validating personally, my child > after all the cutting edge autism treatments really doesn't fit that diagnosis > anymore but is far from healthy. > > > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-int\ roducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > > > thoughts? > > > > Roseann > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 yes allie, thanks for posting your notes on that. we always hear the latest info here so that will have to do for me. eventually you've heard it all and are just waiting for the new *thing* on the horizon which I think is the GcMAF and perhaps Immusist. I pray this new treatment yeilds BIG results, for your family + all who are trying it. best, Roseann -----Original Message----- To: BorreliaMultipleInfectionsAndAutism <BorreliaMultipleInfectionsAndAutism > Sent: Wed, Mar 7, ] Re: DR B. on PANS Roseann I know the conf. was a huge expensive and way over priced. It was the most expensive conf that I have ever attended, and was sadly disappointed in many aspects. Some just the fact the hotel was a sick hotel and had something that made me too sick to be in the building for any length of time. I had to get outside a lot to get fresh air. I was hoping to get the best out of seeing all the DR's speak - because I cannot afford to see all these DR's and was surprised that many parents have 3-6 DR's they are taking their children to. Which we cannnot afford, much less all the traveling costs. That is why I shared my notes with the group a few weeks ago, as I know others could not attend. The biggest take away info was EMF, which has been discussed a lot already on this group. And GcMAF. I have tested my son, and went on to start treating him, with the homeopathic, and it is too soon to get excited but I think I have noticed some changes even doing a wk's of homeopathic drops. Will post if I see more results in the months to come. HTH's Allie > > > > > > > > This PANS diagnosis may be the validation for Lyme-Induced Autism and those > maybe without Lyme but a more of NIDs picuture. Kinda what we knew already but > could this be the name for it? I find this very validating personally, my child > after all the cutting edge autism treatments really doesn't fit that diagnosis > anymore but is far from healthy. > > > > http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/ > > > > thoughts? > > > > Roseann > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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