24 Jan 2013, 9:12 pm
Hello all 
Some of you likely remember me from a few years ago when I was posting regularly on WP. Without going into major details in terms of what's been going on with me (as if anyone cares in the first place 
) lately, let's just say I was working full time and occupied with several other things. The depression I was suffering from is gone thanks largely to Citalopram and many people here on Wrongplanet who helped me through it. I have little but positive things to say about almost every member of WP and aside from countless other things, many of you have shown me that i'm not alone in my life-long struggles with a neurological/neurodevelopmental disorder.
In any case.....I was recently fired from the job that I held for two years (technical support/customer service) for reasons which may or may not have anything to do with my NLD/Asperger's (<the controversy as to whether NLD and Asperger's are one and the same disorder or not is immaterial for my purposes here). It's no big deal really....i'm collecting unemployment for now and i'll get another job soon enough i'm sure. In the meantime....i'm back in college and I hope to eventually obtain a doctorate in neuropsychology.
Now with all my recent personal affairs put into a nutshell, I can get to the crux of the matter insofar as this post is concerned.
I had a recent and very lengthy (over two hours) conversation with the man (Jeremy Lowey) mentioned in the last paragraph of this Scientific American article:
https://www.scientificamerican.com/arti ... ches-in-us
As you can see, the article provides few details about the stem cell therapy he received for his NLD. After many years of struggling with all that often comes with the NLD syndrome, Jeremy was at the end of his rope. He didn't want to go on living with the disorder and all the awful impacts it was having on his life. He tried several different therapies, (including neurofeedback and hyperbaric oxygen treatments) but none proved effective. After many months of research, he contacted a highly respected neurosurgeon in India and inquired about stem cell therapy for his NLD. The Dr. asked Jeremy to send both his medical records and the results of an MRI. Jeremy complied and was eventually told he could come to India to have the treatments. The therapy involved his own adult stem cells extracted from bone marrow in his lower back (maybe somewhere in the spinal column...not sure). The cells were allowed to grow in a laboratory for about three weeks. After that....they were implanted directly into his brain in two areas...one in the right hemisphere and one in the left. There were two other options available for the application of the cells... intravenous or spinal infusion. Without going into much technical detail, there are reasons to believe these two options would not prove as effective as direct brain implantation might (and apparently did ultimately) and there was a good chance they wouldn't have been effective at all.
After a brief recovery period in the Indian hospital where the procedure took place, Jeremy went home to California. Within three weeks....he started to notice some dramatic changes in himself. He said that his hyperactivity and anxiety had disappeared and he could focus much better than ever before. He told me that nothing but "miraculous" and "life changing" benefits followed in terms of his cognitive abilities and behavior. The visual-spatial, motor, executive functioning and social deficits typically found in NLD/NVLD had greatly improved. Seven months after the therapy.....Jeremy had another neuropsychological evaluation (including usual psychometric tests like the WAIS-III IQ test, WMS, Wisconsin Card Sorting, etc....). The neuropsychologist confirmed that his condition had substantially improved in many areas when compared to his observations and the results of Jeremy's pre-therapy neuropsych evals.
Jeremy now claims his brain is "the best it's ever been", although he will not go as far as saying he's "cured". To the contrary...the neuropsychologist who tested him post-therapy said that the results of the eval indicated that he still met the criteria for NLD, but that the overall deficits associated with the disorder had improved substantially. He is now working full time and said his life has basically made a 360 degree turn for the better 
Now I don't want to go into much detail about my own struggles with NLD. I've shared my story many times here on WP and elsewhere. Some of you "old campaigners" are likely familiar with it and i'm trying not to make this post an all-nighter. Suffice it to say that if the devil himself appeared to me and offered me a "cure, (or at least drastic improvements to the aspects of my condition which trouble me the most) I would be sorely tempted to take the old boy up on his offer 
Nonexistent authors of all evil and souls (atheist/scientific materialist/determinist here 
) notwithstanding....Jeremy's story has, if nothing else, provided me with a tiny bit of hope. Very little hope assuredly.....but not NO hope. Now I ought to mention a few things before I continue. There are A LOT of scams the world over which
involve stem cell therapy. 60 minutes (and other media entities) has already exposed these scams years ago and videos about this are all over YouTube.
As far as Jeremy's own story is concerned.....I have no reason to suspect it's false. He SEEMS like a very nice and compassionate man who is only interested in telling his story to others and offering them any advice and aid that he can if they decide to undergo something like this (regardless of whether they have NLD or some other disorder which might be effectively treated with stem cell therapy). That said....I am giving him the benefit of the doubt. NONETHELESS....I am hardly a trusting person and anything but naive. I have many months of research and consultation (with various neuropsychologists and other relevant professionals) to do and that will INCLUDE unquestionable verification/s of Jeremy's story. Considering what's at stake and the ubiquitous scams involving stem cell therapy.... one simply can't be too careful here.
In short......I'd like to know what you guys think of this whole thing. Do you know anything more about it than i've already learned (most of which has been mentioned here sans the technical and unnecessary <*for the time being at least* details) and have any of you heard of Jeremy Lowey??? Anyone know of anything like this going on in the United States or some other western nation like France, Germany, the UK, etc.....??? I have a great number of concerns and will only mention one now. I would certainly hope that any stem cell treatments in my case would result in improved "Fluid or non-verbal intelligence". That is....I would hope my visual-spatial deficits would improve, if not disappear. I would also hope it would help me with executive functioning issues and processing speed. Also improved psychomotor skills would be nice as well. Last, but certainly not least, I hope my aptitude for math would see some significant gains though any mathematical disorder I have (which has been confirmed via several neuropsych assessments) may or may not be related to NLD. I really don't care about the social deficits whatsoever, though it's not like i'd be UNHAPPY about improvements in that respect too. The social issues associated with NLD/Asperger's just don't torment me much and maybe that's not too surprising given my diagnosis (again....on several neuropsych evals) of Schizoid Personality Disorder. Whatever the case.....i'm just one of those people who is (and always has been) relatively indifferent to having friends and sexual/romantic relationships 
All this being said.....I AM somewhat concerned about any negative impacts stem cell therapy MIGHT have on my good cognitive abilities. My verbal IQ has tested as high as 155 and it's never been under the very superior/superior range on any IQ test i've taken. I can do very well academically although higher math (Algebra, Trig, etc) is extremely difficult for me... perhaps to say the least. My performance IQ has been in the borderline intellectual functioning ranges (82 and 79) on two IQ tests, average on three others (94, 102, 100) and high average (111) on one.
My worst performance on the Weschler IQ tests has ALWAYS been on the block design and object assembly subtests. On the former....I usually score low average and occasionally borderline. On the latter....I always score in the "impaired" or "borderline" range. Now the object assembly subtest is no longer used on the most current edition of the WAIS tests. The reliability coefficient of that subtest was determined to be unacceptable at .70 or something like that. It has been replaced by a subtest called "visual puzzles" and I also scored in the "impaired" range on that test after taking the latest edition (WAIS-IV) of the Weschler IQ test.
All the scores...or more accurately....PATTERN OF SCORES....i've mentioned are extremely common in those with *classic* or "definite" (per the most widely-accepted criteria developed by the late Dr. Byron Rourke and others) NLD.
Again....my concern is that somehow, someway......my verbal skills would be negatively impacted. Consider the late Kim Peek for one example. There is speculation that his neurons made unusual connections due to the absence of a corpus callosum, which resulted in his amazing memory capacity. Now i'm not a neuroscientist....so I don't know if the neural wiring which allows me to *enjoy* strong verbal/verbal reasoning skills could somehow get screwed up by this stem cell therapy. I seriously doubt it because that mostly depends on the grey matter in the left hemisphere which "crystallizes" verbal/language skills So this is likely a stupid thing to worry about no doubt....but again....i'm not a neuroscientist or an expert on stem cell therapy...so I can't be CERTAIN in this regard.
By the way....there is currently a clinical trial underway at Duke University and as far as I know....it ONLY involves CORD BLOOD stem cells which, for obvious reason, would not be an option for me. Another person with NLD is supposed to start participating in this study this week. We probably won't know if it proved efficacious for him for several months. Nonetheless.....this young boy DID take part in this Duke study and his own results might be legitimately defined as a CURE.....for Cerebral Palsy that is:
http://www.today.com/id/23572206/site/t ... QG5AifAes8
Before I submit this, I just wanted to make something clear. I do not wish to engage in any debates/discussions regarding the virtues, or lack thereof, of "cures" and treatments for things like NLD, Asperger's and other Autism Spectrum/related disorders. I realize many of you have very negative feelings about all that and not without good reason. I respect those positions, but personally speaking, I just can't abide in any black/white mentalities about said "cures" and treatments. Many *non-neurotypical* people are happy exactly as they are and wouldn't even consider a "cure" or treatment for a nanosecond. This happiness and self-contentment may be just as prevalent as those who are labelled "low functioning" by professionals/the larger neurotypical society as it is among those who are considered "high functioning". Many feel autism, NLD, etc....is a, "difference not a disability". For the individuals who believe this...that is EXACTLY what it is.
Nonetheless....I have no doubt (and i've seen the polls.....unscientific though they are..... on this whole, "would you want a cure or not" thing) there are many like myself who, openly and apologetically, admit that we are NOT AT ALL happy with our condition/s (regardless of what they are for that matter) and would do almost anything to at least receive some sort of treatment which would provide substantial improvements in our condition/s.....if not an outright "cure". Stem cell therapy seems to hold a great deal of promise in this regard and probably much more so than any other treatment method thus far. In sum....I firmly believe the "cure/treat" or not to "cure/treat" question ought to be determined by the individual with the condition and NOBODY but them.
Anyway....I would greatly appreciate any insight, advice, info, etc...any of you have about all this.
24 Jan 2013, 11:29 pm
24 Jan 2013, 11:36 pm
Tyri0n
Veteran
Joined: 24 Nov 2012
Age: 38
Gender: Male
Posts: 2,879
Location: Douchebag Capital of the World (aka Washington D.C.)
24 Jan 2013, 11:56 pm
Some of you likely remember me from a few years ago when I was posting regularly on WP. Without going into major details in terms of what's been going on with me (as if anyone cares in the first place
) lately, let's just say I was working full time and occupied with several other things. The depression I was suffering from is gone thanks largely to Citalopram and many people here on Wrongplanet who helped me through it. I have little but positive things to say about almost every member of WP and aside from countless other things, many of you have shown me that i'm not alone in my life-long struggles with a neurological/neurodevelopmental disorder. In any case.....I was recently fired from the job that I held for two years (technical support/customer service) for reasons which may or may not have anything to do with my NLD/Asperger's (<the controversy as to whether NLD and Asperger's are one and the same disorder or not is immaterial for my purposes here). It's no big deal really....i'm collecting unemployment for now and i'll get another job soon enough i'm sure. In the meantime....i'm back in college and I hope to eventually obtain a doctorate in neuropsychology.
Now with all my recent personal affairs put into a nutshell, I can get to the crux of the matter insofar as this post is concerned.
I had a recent and very lengthy (over two hours) conversation with the man (Jeremy Lowey) mentioned in the last paragraph of this Scientific American article:
https://www.scientificamerican.com/arti ... ches-in-us
As you can see, the article provides few details about the stem cell therapy he received for his NLD. After many years of struggling with all that often comes with the NLD syndrome, Jeremy was at the end of his rope. He didn't want to go on living with the disorder and all the awful impacts it was having on his life. He tried several different therapies, (including neurofeedback and hyperbaric oxygen treatments) but none proved effective. After many months of research, he contacted a highly respected neurosurgeon in India and inquired about stem cell therapy for his NLD. The Dr. asked Jeremy to send both his medical records and the results of an MRI. Jeremy complied and was eventually told he could come to India to have the treatments. The therapy involved his own adult stem cells extracted from bone marrow in his lower back (maybe somewhere in the spinal column...not sure). The cells were allowed to grow in a laboratory for about three weeks. After that....they were implanted directly into his brain in two areas...one in the right hemisphere and one in the left. There were two other options available for the application of the cells... intravenous or spinal infusion. Without going into much technical detail, there are reasons to believe these two options would not prove as effective as direct brain implantation might (and apparently did ultimately) and there was a good chance they wouldn't have been effective at all.
After a brief recovery period in the Indian hospital where the procedure took place, Jeremy went home to California. Within three weeks....he started to notice some dramatic changes in himself. He said that his hyperactivity and anxiety had disappeared and he could focus much better than ever before. He told me that nothing but "miraculous" and "life changing" benefits followed in terms of his cognitive abilities and behavior. The visual-spatial, motor, executive functioning and social deficits typically found in NLD/NVLD had greatly improved. Seven months after the therapy.....Jeremy had another neuropsychological evaluation (including usual psychometric tests like the WAIS-III IQ test, WMS, Wisconsin Card Sorting, etc....). The neuropsychologist confirmed that his condition had substantially improved in many areas when compared to his observations and the results of Jeremy's pre-therapy neuropsych evals.
Jeremy now claims his brain is "the best it's ever been", although he will not go as far as saying he's "cured". To the contrary...the neuropsychologist who tested him post-therapy said that the results of the eval indicated that he still met the criteria for NLD, but that the overall deficits associated with the disorder had improved substantially. He is now working full time and said his life has basically made a 360 degree turn for the better
Now I don't want to go into much detail about my own struggles with NLD. I've shared my story many times here on WP and elsewhere. Some of you "old campaigners" are likely familiar with it and i'm trying not to make this post an all-nighter. Suffice it to say that if the devil himself appeared to me and offered me a "cure, (or at least drastic improvements to the aspects of my condition which trouble me the most) I would be sorely tempted to take the old boy up on his offer
Nonexistent authors of all evil and souls (atheist/scientific materialist/determinist here ) notwithstanding....Jeremy's story has, if nothing else, provided me with a tiny bit of hope. Very little hope assuredly.....but not NO hope. Now I ought to mention a few things before I continue. There are A LOT of scams the world over which involve stem cell therapy. 60 minutes (and other media entities) has already exposed these scams years ago and videos about this are all over YouTube.
As far as Jeremy's own story is concerned.....I have no reason to suspect it's false. He SEEMS like a very nice and compassionate man who is only interested in telling his story to others and offering them any advice and aid that he can if they decide to undergo something like this (regardless of whether they have NLD or some other disorder which might be effectively treated with stem cell therapy). That said....I am giving him the benefit of the doubt. NONETHELESS....I am hardly a trusting person and anything but naive. I have many months of research and consultation (with various neuropsychologists and other relevant professionals) to do and that will INCLUDE unquestionable verification/s of Jeremy's story. Considering what's at stake and the ubiquitous scams involving stem cell therapy.... one simply can't be too careful here.
In short......I'd like to know what you guys think of this whole thing. Do you know anything more about it than i've already learned (most of which has been mentioned here sans the technical and unnecessary <*for the time being at least* details) and have any of you heard of Jeremy Lowey??? Anyone know of anything like this going on in the United States or some other western nation like France, Germany, the UK, etc.....??? I have a great number of concerns and will only mention one now. I would certainly hope that any stem cell treatments in my case would result in improved "Fluid or non-verbal intelligence". That is....I would hope my visual-spatial deficits would improve, if not disappear. I would also hope it would help me with executive functioning issues and processing speed. Also improved psychomotor skills would be nice as well. Last, but certainly not least, I hope my aptitude for math would see some significant gains though any mathematical disorder I have (which has been confirmed via several neuropsych assessments) may or may not be related to NLD. I really don't care about the social deficits whatsoever, though it's not like i'd be UNHAPPY about improvements in that respect too. The social issues associated with NLD/Asperger's just don't torment me much and maybe that's not too surprising given my diagnosis (again....on several neuropsych evals) of Schizoid Personality Disorder. Whatever the case.....i'm just one of those people who is (and always has been) relatively indifferent to having friends and sexual/romantic relationships
All this being said.....I AM somewhat concerned about any negative impacts stem cell therapy MIGHT have on my good cognitive abilities. My verbal IQ has tested as high as 155 and it's never been under the very superior/superior range on any IQ test i've taken. I can do very well academically although higher math (Algebra, Trig, etc) is extremely difficult for me... perhaps to say the least. My performance IQ has been in the borderline intellectual functioning ranges (82 and 79) on two IQ tests, average on three others (94, 102, 100) and high average (111) on one.
My worst performance on the Weschler IQ tests has ALWAYS been on the block design and object assembly subtests. On the former....I usually score low average and occasionally borderline. On the latter....I always score in the "impaired" or "borderline" range. Now the object assembly subtest is no longer used on the most current edition of the WAIS tests. The reliability coefficient of that subtest was determined to be unacceptable at .70 or something like that. It has been replaced by a subtest called "visual puzzles" and I also scored in the "impaired" range on that test after taking the latest edition (WAIS-IV) of the Weschler IQ test.
All the scores...or more accurately....PATTERN OF SCORES....i've mentioned are extremely common in those with *classic* or "definite" (per the most widely-accepted criteria developed by the late Dr. Byron Rourke and others) NLD.
Again....my concern is that somehow, someway......my verbal skills would be negatively impacted. Consider the late Kim Peek for one example. There is speculation that his neurons made unusual connections due to the absence of a corpus callosum, which resulted in his amazing memory capacity. Now i'm not a neuroscientist....so I don't know if the neural wiring which allows me to *enjoy* strong verbal/verbal reasoning skills could somehow get screwed up by this stem cell therapy. I seriously doubt it because that mostly depends on the grey matter in the left hemisphere which "crystallizes" verbal/language skills So this is likely a stupid thing to worry about no doubt....but again....i'm not a neuroscientist or an expert on stem cell therapy...so I can't be CERTAIN in this regard.
By the way....there is currently a clinical trial underway at Duke University and as far as I know....it ONLY involves CORD BLOOD stem cells which, for obvious reason, would not be an option for me. Another person with NLD is supposed to start participating in this study this week. We probably won't know if it proved efficacious for him for several months. Nonetheless.....this young boy DID take part in this Duke study and his own results might be legitimately defined as a CURE.....for Cerebral Palsy that is:
http://www.today.com/id/23572206/site/t ... QG5AifAes8
Before I submit this, I just wanted to make something clear. I do not wish to engage in any debates/discussions regarding the virtues, or lack thereof, of "cures" and treatments for things like NLD, Asperger's and other Autism Spectrum/related disorders. I realize many of you have very negative feelings about all that and not without good reason. I respect those positions, but personally speaking, I just can't abide in any black/white mentalities about said "cures" and treatments. Many *non-neurotypical* people are happy exactly as they are and wouldn't even consider a "cure" or treatment for a nanosecond. This happiness and self-contentment may be just as prevalent as those who are labelled "low functioning" by professionals/the larger neurotypical society as it is among those who are considered "high functioning". Many feel autism, NLD, etc....is a, "difference not a disability". For the individuals who believe this...that is EXACTLY what it is.
Nonetheless....I have no doubt (and i've seen the polls.....unscientific though they are..... on this whole, "would you want a cure or not" thing) there are many like myself who, openly and apologetically, admit that we are NOT AT ALL happy with our condition/s (regardless of what they are for that matter) and would do almost anything to at least receive some sort of treatment which would provide substantial improvements in our condition/s.....if not an outright "cure". Stem cell therapy seems to hold a great deal of promise in this regard and probably much more so than any other treatment method thus far. In sum....I firmly believe the "cure/treat" or not to "cure/treat" question ought to be determined by the individual with the condition and NOBODY but them.
Anyway....I would greatly appreciate any insight, advice, info, etc...any of you have about all this.
I'm very, very similar to you, and I also spoke with Jeremy Lowey. He actually sent me his full testing results, which was very nice of him, I think.
I may do this at some point in the future, too. Right now, I'm trying vision therapy to see if it could help me at least get by for a few years until I can cough up $15,000 + airfare to go to India.
I do not have cord blood either, unfortunately. It sucks that 20 years of George W. Bush and a Republican Congress has set us back so far in this area. If India can do it, we certainly COULD have done it a long time ago if it weren't for the crazy religious Know-Nothings like George W. Bush and the idiot Paul Ryan who block stem cell research.
25 Jan 2013, 11:40 am
Some of you likely remember me from a few years ago when I was posting regularly on WP. Without going into major details in terms of what's been going on with me (as if anyone cares in the first place
) lately, let's just say I was working full time and occupied with several other things. The depression I was suffering from is gone thanks largely to Citalopram and many people here on Wrongplanet who helped me through it. I have little but positive things to say about almost every member of WP and aside from countless other things, many of you have shown me that i'm not alone in my life-long struggles with a neurological/neurodevelopmental disorder. In any case.....I was recently fired from the job that I held for two years (technical support/customer service) for reasons which may or may not have anything to do with my NLD/Asperger's (<the controversy as to whether NLD and Asperger's are one and the same disorder or not is immaterial for my purposes here). It's no big deal really....i'm collecting unemployment for now and i'll get another job soon enough i'm sure. In the meantime....i'm back in college and I hope to eventually obtain a doctorate in neuropsychology.
Now with all my recent personal affairs put into a nutshell, I can get to the crux of the matter insofar as this post is concerned.
I had a recent and very lengthy (over two hours) conversation with the man (Jeremy Lowey) mentioned in the last paragraph of this Scientific American article:
https://www.scientificamerican.com/arti ... ches-in-us
As you can see, the article provides few details about the stem cell therapy he received for his NLD. After many years of struggling with all that often comes with the NLD syndrome, Jeremy was at the end of his rope. He didn't want to go on living with the disorder and all the awful impacts it was having on his life. He tried several different therapies, (including neurofeedback and hyperbaric oxygen treatments) but none proved effective. After many months of research, he contacted a highly respected neurosurgeon in India and inquired about stem cell therapy for his NLD. The Dr. asked Jeremy to send both his medical records and the results of an MRI. Jeremy complied and was eventually told he could come to India to have the treatments. The therapy involved his own adult stem cells extracted from bone marrow in his lower back (maybe somewhere in the spinal column...not sure). The cells were allowed to grow in a laboratory for about three weeks. After that....they were implanted directly into his brain in two areas...one in the right hemisphere and one in the left. There were two other options available for the application of the cells... intravenous or spinal infusion. Without going into much technical detail, there are reasons to believe these two options would not prove as effective as direct brain implantation might (and apparently did ultimately) and there was a good chance they wouldn't have been effective at all.
After a brief recovery period in the Indian hospital where the procedure took place, Jeremy went home to California. Within three weeks....he started to notice some dramatic changes in himself. He said that his hyperactivity and anxiety had disappeared and he could focus much better than ever before. He told me that nothing but "miraculous" and "life changing" benefits followed in terms of his cognitive abilities and behavior. The visual-spatial, motor, executive functioning and social deficits typically found in NLD/NVLD had greatly improved. Seven months after the therapy.....Jeremy had another neuropsychological evaluation (including usual psychometric tests like the WAIS-III IQ test, WMS, Wisconsin Card Sorting, etc....). The neuropsychologist confirmed that his condition had substantially improved in many areas when compared to his observations and the results of Jeremy's pre-therapy neuropsych evals.
Jeremy now claims his brain is "the best it's ever been", although he will not go as far as saying he's "cured". To the contrary...the neuropsychologist who tested him post-therapy said that the results of the eval indicated that he still met the criteria for NLD, but that the overall deficits associated with the disorder had improved substantially. He is now working full time and said his life has basically made a 360 degree turn for the better
Now I don't want to go into much detail about my own struggles with NLD. I've shared my story many times here on WP and elsewhere. Some of you "old campaigners" are likely familiar with it and i'm trying not to make this post an all-nighter. Suffice it to say that if the devil himself appeared to me and offered me a "cure, (or at least drastic improvements to the aspects of my condition which trouble me the most) I would be sorely tempted to take the old boy up on his offer
Nonexistent authors of all evil and souls (atheist/scientific materialist/determinist here ) notwithstanding....Jeremy's story has, if nothing else, provided me with a tiny bit of hope. Very little hope assuredly.....but not NO hope. Now I ought to mention a few things before I continue. There are A LOT of scams the world over which involve stem cell therapy. 60 minutes (and other media entities) has already exposed these scams years ago and videos about this are all over YouTube.
As far as Jeremy's own story is concerned.....I have no reason to suspect it's false. He SEEMS like a very nice and compassionate man who is only interested in telling his story to others and offering them any advice and aid that he can if they decide to undergo something like this (regardless of whether they have NLD or some other disorder which might be effectively treated with stem cell therapy). That said....I am giving him the benefit of the doubt. NONETHELESS....I am hardly a trusting person and anything but naive. I have many months of research and consultation (with various neuropsychologists and other relevant professionals) to do and that will INCLUDE unquestionable verification/s of Jeremy's story. Considering what's at stake and the ubiquitous scams involving stem cell therapy.... one simply can't be too careful here.
In short......I'd like to know what you guys think of this whole thing. Do you know anything more about it than i've already learned (most of which has been mentioned here sans the technical and unnecessary <*for the time being at least* details) and have any of you heard of Jeremy Lowey??? Anyone know of anything like this going on in the United States or some other western nation like France, Germany, the UK, etc.....??? I have a great number of concerns and will only mention one now. I would certainly hope that any stem cell treatments in my case would result in improved "Fluid or non-verbal intelligence". That is....I would hope my visual-spatial deficits would improve, if not disappear. I would also hope it would help me with executive functioning issues and processing speed. Also improved psychomotor skills would be nice as well. Last, but certainly not least, I hope my aptitude for math would see some significant gains though any mathematical disorder I have (which has been confirmed via several neuropsych assessments) may or may not be related to NLD. I really don't care about the social deficits whatsoever, though it's not like i'd be UNHAPPY about improvements in that respect too. The social issues associated with NLD/Asperger's just don't torment me much and maybe that's not too surprising given my diagnosis (again....on several neuropsych evals) of Schizoid Personality Disorder. Whatever the case.....i'm just one of those people who is (and always has been) relatively indifferent to having friends and sexual/romantic relationships
All this being said.....I AM somewhat concerned about any negative impacts stem cell therapy MIGHT have on my good cognitive abilities. My verbal IQ has tested as high as 155 and it's never been under the very superior/superior range on any IQ test i've taken. I can do very well academically although higher math (Algebra, Trig, etc) is extremely difficult for me... perhaps to say the least. My performance IQ has been in the borderline intellectual functioning ranges (82 and 79) on two IQ tests, average on three others (94, 102, 100) and high average (111) on one.
My worst performance on the Weschler IQ tests has ALWAYS been on the block design and object assembly subtests. On the former....I usually score low average and occasionally borderline. On the latter....I always score in the "impaired" or "borderline" range. Now the object assembly subtest is no longer used on the most current edition of the WAIS tests. The reliability coefficient of that subtest was determined to be unacceptable at .70 or something like that. It has been replaced by a subtest called "visual puzzles" and I also scored in the "impaired" range on that test after taking the latest edition (WAIS-IV) of the Weschler IQ test.
All the scores...or more accurately....PATTERN OF SCORES....i've mentioned are extremely common in those with *classic* or "definite" (per the most widely-accepted criteria developed by the late Dr. Byron Rourke and others) NLD.
Again....my concern is that somehow, someway......my verbal skills would be negatively impacted. Consider the late Kim Peek for one example. There is speculation that his neurons made unusual connections due to the absence of a corpus callosum, which resulted in his amazing memory capacity. Now i'm not a neuroscientist....so I don't know if the neural wiring which allows me to *enjoy* strong verbal/verbal reasoning skills could somehow get screwed up by this stem cell therapy. I seriously doubt it because that mostly depends on the grey matter in the left hemisphere which "crystallizes" verbal/language skills So this is likely a stupid thing to worry about no doubt....but again....i'm not a neuroscientist or an expert on stem cell therapy...so I can't be CERTAIN in this regard.
By the way....there is currently a clinical trial underway at Duke University and as far as I know....it ONLY involves CORD BLOOD stem cells which, for obvious reason, would not be an option for me. Another person with NLD is supposed to start participating in this study this week. We probably won't know if it proved efficacious for him for several months. Nonetheless.....this young boy DID take part in this Duke study and his own results might be legitimately defined as a CURE.....for Cerebral Palsy that is:
http://www.today.com/id/23572206/site/t ... QG5AifAes8
Before I submit this, I just wanted to make something clear. I do not wish to engage in any debates/discussions regarding the virtues, or lack thereof, of "cures" and treatments for things like NLD, Asperger's and other Autism Spectrum/related disorders. I realize many of you have very negative feelings about all that and not without good reason. I respect those positions, but personally speaking, I just can't abide in any black/white mentalities about said "cures" and treatments. Many *non-neurotypical* people are happy exactly as they are and wouldn't even consider a "cure" or treatment for a nanosecond. This happiness and self-contentment may be just as prevalent as those who are labelled "low functioning" by professionals/the larger neurotypical society as it is among those who are considered "high functioning". Many feel autism, NLD, etc....is a, "difference not a disability". For the individuals who believe this...that is EXACTLY what it is.
Nonetheless....I have no doubt (and i've seen the polls.....unscientific though they are..... on this whole, "would you want a cure or not" thing) there are many like myself who, openly and apologetically, admit that we are NOT AT ALL happy with our condition/s (regardless of what they are for that matter) and would do almost anything to at least receive some sort of treatment which would provide substantial improvements in our condition/s.....if not an outright "cure". Stem cell therapy seems to hold a great deal of promise in this regard and probably much more so than any other treatment method thus far. In sum....I firmly believe the "cure/treat" or not to "cure/treat" question ought to be determined by the individual with the condition and NOBODY but them.
Anyway....I would greatly appreciate any insight, advice, info, etc...any of you have about all this.
I'm very, very similar to you, and I also spoke with Jeremy Lowey. He actually sent me his full testing results, which was very nice of him, I think.
I may do this at some point in the future, too. Right now, I'm trying vision therapy to see if it could help me at least get by for a few years until I can cough up $15,000 + airfare to go to India.
I do not have cord blood either, unfortunately. It sucks that 20 years of George W. Bush and a Republican Congress has set us back so far in this area. If India can do it, we certainly COULD have done it a long time ago if it weren't for the crazy religious Know-Nothings like George W. Bush and the idiot Paul Ryan who block stem cell research.
Hi Tyri0n
Jeremy seems like a terrific guy who really has a desire to be a selfless advocate for stem cell therapy. Nonetheless......I still need to do tons of research about the whole thing and i'm not sure if it's something i'll do even if it does look like a good prospect. Time will tell, but it really is the most exciting development yet in terms of any treatments for NLD. He sent me his test results as well and while the neuropsychologist DID say there were several improvements in comparison to his pre-therapy neuropsych evals, it's sort of hard to determine what those improvements mean (aside from what Jeremy told me) in the *real world*. For one thing...Jeremy did not send the results (not that I expected him to) of his pre-therapy neuropsych assessments, so I had nothing to compare his latest ones to. For another....there's a lot of things I personally would like to know regarding improvements (such as if his ability at math improved) and that's difficult to determine simply based on the neuropsych results he sent to me.
I don't know much about vision therapy for NLD. I read about it a long time ago, but if I remember correctly, it didn't seem worthwhile for me. Can you tell me what it's supposed to do for a person with NLD??? Is it something that can improve your visual-spatial skills and perhaps sensorimotor skills??? If so.....is it supposed to improve non-verbal/visual spatial REASONING??? For example......can it actually result in better performance at mechanical tasks, non-verbal/spatial types of math like geometry/trig, higher scores on the performance IQ subtests like block design and visual puzzles, etc???.....As far as I know...it's not purported to do any of those things, but i'm not 100% sure. No matter what....i'm sure it's yet another thing my insurance would never cover
Anyway.....embyronic stem cell therapy isn't a viable option currently of course. There's no doubt that embyronic stem cells have great potential and may entail several advantages over adult/cord blood stem cells. At this point however.....therapy involving embyronic stem cells is risky as they have the potential to form tumors. I've heard that no tumors were observed in clinical trials using ESCs, but the risk is still a concern among researchers nonetheless.
Now I don't want to say too much about the political/"ethical" controversy regarding embyronic stem cell research. All I can say is that few things irk me more than religious people who attempt to hinder scientific progress (and MEDICAL scientific progress in this case) because of some ridiculous belief they have. Let's face it....most of the opposition to ESC research (at least when the creation of embryos for experimentation is involved) is based upon the religious beliefs of some. I'm sorry.....but until these religious people can provide sound EVIDENCE which would imply ethical prohibitions (say....evidence that "a soul" exists within the embryo and therefore humans are in violation of god's law if they willfully destroy the embryo) on ESC research....they should not be taken anymore seriously than someone who claims it's unethical to eat mushrooms because elves live underneath them
25 Jan 2013, 6:24 pm
26 Jan 2013, 10:07 am
26 Jan 2013, 5:00 pm
It's most likely to be useful when they know exactly what gene is defective, and the impacts are felt in only one cell line that is either located in a limited area or can move around. That's why the first candidates for treatment are things like Parkinson's disease (only affects a particular set of cells in the basal ganglia) and SCID (only affects the white blood cells). Even with those conditions, there are problems. In Parkinson's, it's a temporary fix, because whatever causes the linea nigra cells to deteriorate affects the new cells as well. In SCID, it's more effective, but several kids have gotten leukemia (cancer of the white blood cells) as a side effect.
With NVLD, best guess is that it's probably caused by degeneration of white matter (which is more prevalent in the right hemisphere). White matter is present throughout the brain, so you wouldn't be able to just inject the cells in one spot. And they have no idea what by what mechanism this degeneration occurs.
You can find multitudes of people claiming to have been cured by all manner of quack treatments. Many of them believe it, too, and are not trying to deceive anyone. Unless you have a peer-reviewed journal article to show me, I'm just going to count this as another quack treatment.
I can't argue with any of this Ettina. I've read all this before about the linea nigra cells and likely futility of SCT in terms of a viable treatment for Parkinson's.
In any case....everything you said here is just ONE REASON I wrote this in my OP:
"Jeremy's story has, if nothing else, provided me with a tiny bit of hope. Very little hope assuredly.....but not NO hope".
Still....regardless of whether it's desperation, wishful thinking, etc.....on my part or not....this quark-sized amount of hope is all I have atm.
Therefore....it's still worth researching IMO. Said research will take me months as I have many other time-consuming priorities I certainly won't forego just to spend endless hours online, in the university library, etc...researching something like this. I have no other choice to research of all this in a very piecemeal fashion. At the end of the day....all I can say here/now is that I hope for the best and fully expect the worst.
OTOH....there's little doubt as to the veracity of this story.
http://www.today.com/id/23572206/site/t ... QG5AifAes8
An 11 y/o boy with NLD is supposedly taking part in this same clinical trial at Duke and I believe he started earlier this week.
Along with Jeremy's story....which taken at face value, SEEMS legitimate....these other two examples a big part of the tiny amount of hope I have. That being said.....I take NOTHING at "face value", hence one of the reasons to research every aspect of the matter until the cows come home and then some
Tyri0n
Veteran
Joined: 24 Nov 2012
Age: 38
Gender: Male
Posts: 2,879
Location: Douchebag Capital of the World (aka Washington D.C.)
27 Jan 2013, 3:40 am
Some of you likely remember me from a few years ago when I was posting regularly on WP. Without going into major details in terms of what's been going on with me (as if anyone cares in the first place
) lately, let's just say I was working full time and occupied with several other things. The depression I was suffering from is gone thanks largely to Citalopram and many people here on Wrongplanet who helped me through it. I have little but positive things to say about almost every member of WP and aside from countless other things, many of you have shown me that i'm not alone in my life-long struggles with a neurological/neurodevelopmental disorder. In any case.....I was recently fired from the job that I held for two years (technical support/customer service) for reasons which may or may not have anything to do with my NLD/Asperger's (<the controversy as to whether NLD and Asperger's are one and the same disorder or not is immaterial for my purposes here). It's no big deal really....i'm collecting unemployment for now and i'll get another job soon enough i'm sure. In the meantime....i'm back in college and I hope to eventually obtain a doctorate in neuropsychology.
Now with all my recent personal affairs put into a nutshell, I can get to the crux of the matter insofar as this post is concerned.
I had a recent and very lengthy (over two hours) conversation with the man (Jeremy Lowey) mentioned in the last paragraph of this Scientific American article:
https://www.scientificamerican.com/arti ... ches-in-us
As you can see, the article provides few details about the stem cell therapy he received for his NLD. After many years of struggling with all that often comes with the NLD syndrome, Jeremy was at the end of his rope. He didn't want to go on living with the disorder and all the awful impacts it was having on his life. He tried several different therapies, (including neurofeedback and hyperbaric oxygen treatments) but none proved effective. After many months of research, he contacted a highly respected neurosurgeon in India and inquired about stem cell therapy for his NLD. The Dr. asked Jeremy to send both his medical records and the results of an MRI. Jeremy complied and was eventually told he could come to India to have the treatments. The therapy involved his own adult stem cells extracted from bone marrow in his lower back (maybe somewhere in the spinal column...not sure). The cells were allowed to grow in a laboratory for about three weeks. After that....they were implanted directly into his brain in two areas...one in the right hemisphere and one in the left. There were two other options available for the application of the cells... intravenous or spinal infusion. Without going into much technical detail, there are reasons to believe these two options would not prove as effective as direct brain implantation might (and apparently did ultimately) and there was a good chance they wouldn't have been effective at all.
After a brief recovery period in the Indian hospital where the procedure took place, Jeremy went home to California. Within three weeks....he started to notice some dramatic changes in himself. He said that his hyperactivity and anxiety had disappeared and he could focus much better than ever before. He told me that nothing but "miraculous" and "life changing" benefits followed in terms of his cognitive abilities and behavior. The visual-spatial, motor, executive functioning and social deficits typically found in NLD/NVLD had greatly improved. Seven months after the therapy.....Jeremy had another neuropsychological evaluation (including usual psychometric tests like the WAIS-III IQ test, WMS, Wisconsin Card Sorting, etc....). The neuropsychologist confirmed that his condition had substantially improved in many areas when compared to his observations and the results of Jeremy's pre-therapy neuropsych evals.
Jeremy now claims his brain is "the best it's ever been", although he will not go as far as saying he's "cured". To the contrary...the neuropsychologist who tested him post-therapy said that the results of the eval indicated that he still met the criteria for NLD, but that the overall deficits associated with the disorder had improved substantially. He is now working full time and said his life has basically made a 360 degree turn for the better
Now I don't want to go into much detail about my own struggles with NLD. I've shared my story many times here on WP and elsewhere. Some of you "old campaigners" are likely familiar with it and i'm trying not to make this post an all-nighter. Suffice it to say that if the devil himself appeared to me and offered me a "cure, (or at least drastic improvements to the aspects of my condition which trouble me the most) I would be sorely tempted to take the old boy up on his offer
Nonexistent authors of all evil and souls (atheist/scientific materialist/determinist here ) notwithstanding....Jeremy's story has, if nothing else, provided me with a tiny bit of hope. Very little hope assuredly.....but not NO hope. Now I ought to mention a few things before I continue. There are A LOT of scams the world over which involve stem cell therapy. 60 minutes (and other media entities) has already exposed these scams years ago and videos about this are all over YouTube.
As far as Jeremy's own story is concerned.....I have no reason to suspect it's false. He SEEMS like a very nice and compassionate man who is only interested in telling his story to others and offering them any advice and aid that he can if they decide to undergo something like this (regardless of whether they have NLD or some other disorder which might be effectively treated with stem cell therapy). That said....I am giving him the benefit of the doubt. NONETHELESS....I am hardly a trusting person and anything but naive. I have many months of research and consultation (with various neuropsychologists and other relevant professionals) to do and that will INCLUDE unquestionable verification/s of Jeremy's story. Considering what's at stake and the ubiquitous scams involving stem cell therapy.... one simply can't be too careful here.
In short......I'd like to know what you guys think of this whole thing. Do you know anything more about it than i've already learned (most of which has been mentioned here sans the technical and unnecessary <*for the time being at least* details) and have any of you heard of Jeremy Lowey??? Anyone know of anything like this going on in the United States or some other western nation like France, Germany, the UK, etc.....??? I have a great number of concerns and will only mention one now. I would certainly hope that any stem cell treatments in my case would result in improved "Fluid or non-verbal intelligence". That is....I would hope my visual-spatial deficits would improve, if not disappear. I would also hope it would help me with executive functioning issues and processing speed. Also improved psychomotor skills would be nice as well. Last, but certainly not least, I hope my aptitude for math would see some significant gains though any mathematical disorder I have (which has been confirmed via several neuropsych assessments) may or may not be related to NLD. I really don't care about the social deficits whatsoever, though it's not like i'd be UNHAPPY about improvements in that respect too. The social issues associated with NLD/Asperger's just don't torment me much and maybe that's not too surprising given my diagnosis (again....on several neuropsych evals) of Schizoid Personality Disorder. Whatever the case.....i'm just one of those people who is (and always has been) relatively indifferent to having friends and sexual/romantic relationships
All this being said.....I AM somewhat concerned about any negative impacts stem cell therapy MIGHT have on my good cognitive abilities. My verbal IQ has tested as high as 155 and it's never been under the very superior/superior range on any IQ test i've taken. I can do very well academically although higher math (Algebra, Trig, etc) is extremely difficult for me... perhaps to say the least. My performance IQ has been in the borderline intellectual functioning ranges (82 and 79) on two IQ tests, average on three others (94, 102, 100) and high average (111) on one.
My worst performance on the Weschler IQ tests has ALWAYS been on the block design and object assembly subtests. On the former....I usually score low average and occasionally borderline. On the latter....I always score in the "impaired" or "borderline" range. Now the object assembly subtest is no longer used on the most current edition of the WAIS tests. The reliability coefficient of that subtest was determined to be unacceptable at .70 or something like that. It has been replaced by a subtest called "visual puzzles" and I also scored in the "impaired" range on that test after taking the latest edition (WAIS-IV) of the Weschler IQ test.
All the scores...or more accurately....PATTERN OF SCORES....i've mentioned are extremely common in those with *classic* or "definite" (per the most widely-accepted criteria developed by the late Dr. Byron Rourke and others) NLD.
Again....my concern is that somehow, someway......my verbal skills would be negatively impacted. Consider the late Kim Peek for one example. There is speculation that his neurons made unusual connections due to the absence of a corpus callosum, which resulted in his amazing memory capacity. Now i'm not a neuroscientist....so I don't know if the neural wiring which allows me to *enjoy* strong verbal/verbal reasoning skills could somehow get screwed up by this stem cell therapy. I seriously doubt it because that mostly depends on the grey matter in the left hemisphere which "crystallizes" verbal/language skills So this is likely a stupid thing to worry about no doubt....but again....i'm not a neuroscientist or an expert on stem cell therapy...so I can't be CERTAIN in this regard.
By the way....there is currently a clinical trial underway at Duke University and as far as I know....it ONLY involves CORD BLOOD stem cells which, for obvious reason, would not be an option for me. Another person with NLD is supposed to start participating in this study this week. We probably won't know if it proved efficacious for him for several months. Nonetheless.....this young boy DID take part in this Duke study and his own results might be legitimately defined as a CURE.....for Cerebral Palsy that is:
http://www.today.com/id/23572206/site/t ... QG5AifAes8
Before I submit this, I just wanted to make something clear. I do not wish to engage in any debates/discussions regarding the virtues, or lack thereof, of "cures" and treatments for things like NLD, Asperger's and other Autism Spectrum/related disorders. I realize many of you have very negative feelings about all that and not without good reason. I respect those positions, but personally speaking, I just can't abide in any black/white mentalities about said "cures" and treatments. Many *non-neurotypical* people are happy exactly as they are and wouldn't even consider a "cure" or treatment for a nanosecond. This happiness and self-contentment may be just as prevalent as those who are labelled "low functioning" by professionals/the larger neurotypical society as it is among those who are considered "high functioning". Many feel autism, NLD, etc....is a, "difference not a disability". For the individuals who believe this...that is EXACTLY what it is.
Nonetheless....I have no doubt (and i've seen the polls.....unscientific though they are..... on this whole, "would you want a cure or not" thing) there are many like myself who, openly and apologetically, admit that we are NOT AT ALL happy with our condition/s (regardless of what they are for that matter) and would do almost anything to at least receive some sort of treatment which would provide substantial improvements in our condition/s.....if not an outright "cure". Stem cell therapy seems to hold a great deal of promise in this regard and probably much more so than any other treatment method thus far. In sum....I firmly believe the "cure/treat" or not to "cure/treat" question ought to be determined by the individual with the condition and NOBODY but them.
Anyway....I would greatly appreciate any insight, advice, info, etc...any of you have about all this.
I'm very, very similar to you, and I also spoke with Jeremy Lowey. He actually sent me his full testing results, which was very nice of him, I think.
I may do this at some point in the future, too. Right now, I'm trying vision therapy to see if it could help me at least get by for a few years until I can cough up $15,000 + airfare to go to India.
I do not have cord blood either, unfortunately. It sucks that 20 years of George W. Bush and a Republican Congress has set us back so far in this area. If India can do it, we certainly COULD have done it a long time ago if it weren't for the crazy religious Know-Nothings like George W. Bush and the idiot Paul Ryan who block stem cell research.
Hi Tyri0n
Jeremy seems like a terrific guy who really has a desire to be a selfless advocate for stem cell therapy. Nonetheless......I still need to do tons of research about the whole thing and i'm not sure if it's something i'll do even if it does look like a good prospect. Time will tell, but it really is the most exciting development yet in terms of any treatments for NLD. He sent me his test results as well and while the neuropsychologist DID say there were several improvements in comparison to his pre-therapy neuropsych evals, it's sort of hard to determine what those improvements mean (aside from what Jeremy told me) in the *real world*. For one thing...Jeremy did not send the results (not that I expected him to) of his pre-therapy neuropsych assessments, so I had nothing to compare his latest ones to. For another....there's a lot of things I personally would like to know regarding improvements (such as if his ability at math improved) and that's difficult to determine simply based on the neuropsych results he sent to me.
I don't know much about vision therapy for NLD. I read about it a long time ago, but if I remember correctly, it didn't seem worthwhile for me. Can you tell me what it's supposed to do for a person with NLD??? Is it something that can improve your visual-spatial skills and perhaps sensorimotor skills??? If so.....is it supposed to improve non-verbal/visual spatial REASONING??? For example......can it actually result in better performance at mechanical tasks, non-verbal/spatial types of math like geometry/trig, higher scores on the performance IQ subtests like block design and visual puzzles, etc???.....As far as I know...it's not purported to do any of those things, but i'm not 100% sure. No matter what....i'm sure it's yet another thing my insurance would never cover
Anyway.....embyronic stem cell therapy isn't a viable option currently of course. There's no doubt that embyronic stem cells have great potential and may entail several advantages over adult/cord blood stem cells. At this point however.....therapy involving embyronic stem cells is risky as they have the potential to form tumors. I've heard that no tumors were observed in clinical trials using ESCs, but the risk is still a concern among researchers nonetheless.
Now I don't want to say too much about the political/"ethical" controversy regarding embyronic stem cell research. All I can say is that few things irk me more than religious people who attempt to hinder scientific progress (and MEDICAL scientific progress in this case) because of some ridiculous belief they have. Let's face it....most of the opposition to ESC research (at least when the creation of embryos for experimentation is involved) is based upon the religious beliefs of some. I'm sorry.....but until these religious people can provide sound EVIDENCE which would imply ethical prohibitions (say....evidence that "a soul" exists within the embryo and therefore humans are in violation of god's law if they willfully destroy the embryo) on ESC research....they should not be taken anymore seriously than someone who claims it's unethical to eat mushrooms because elves live underneath them
As for vision therapy, the idea is that NVLD (in some cases) is caused by identifiable eye dysfunctions like amlybopia (lazy eye) and accommodative dysfunction (problems with changing focus between far and near). I definitely have both of these; the question is whether the eye stuff is primary or secondary to my serious impairments in social and daily functioning is not a question I can currently answer.
I agree with everything you have said about stem cell research. It's not something I would try without a lot more research. On the other hand, I don't have a ton to lose; I have a feeling I am going to end up ending my life within this year if I don't find some sort of way out, whether it's stem cell treatment, an understanding girlfriend who can help me with the social problems (unlikely without resolving some of them first), or something else, so maybe stem cell treatment is worth the risk.
07 Feb 2013, 1:30 am
07 Feb 2013, 10:42 am
My treatment was done by N.K. (Neelam K.) Venkataramana at BGS Global Hospital in Bangalore, India.They used my own adult stem cells (taken out of my bone marrow), put them in a lab for 3 weeks to let them grow, then reinfused them. The results have been nothing less than miraculous.
I had neurological testing done both before and after the procedure to measure the effects on my mental functioning. The testing confirmed that I had massive improvements in many critical areas; though it did say I still meet the definition of NLD, the level of many of my deficits has decreased dramatically. I'm happy to send a copy of it it to anyone who asks. I never ever use the word "cure", because I'm not a Dr. and I'm not qualified, also b/c I want to be realistic. The term "very effective treatment" is more accurate.
About the legitimacy of stem cell treatment: first, I'm talking about adult cells, NOT embryonic. They're often lumped together, but they're NOT the same thing at all. I'm all for research but I don't support embryonic treatment at this time b/c I don't think it's safe, since putting ANY foreign substance in your body is almost 100% guaranteed to cause rejection and, in many cases, cause tumors to grow. Since adult (and cord blood) treatments use a patients own cells, risk of rejection is virtually zero.
Also, It is ABSOLUTELY, absolutely true that there are many, many predatory scam artists out there just looking to take your money and give treatments that are useless or dangerous, so extreme caution is required when considering this. However, at the same time it's untrue to say that ALL stem cell treatments are frauds, the truth is somewhere in the middle. For those who want to consider this treatment, the best advice I can give is to do your homework, go slowly and make an informed decision. I did 1.5 yrs of nothing but research before I settled on Dr. V. By all means, do not just take my word for it. Talk to researchers, former patients, and above all else, look for a reputable Dr. who has published peer-reviewed papers - that's how I knew Dr. Venkataramana was at least not a fraud, since he has published papers in the U.S. National Health Institute dating back to at least 1986. If he was just another hack he wouldn't have gotten on an official U.S. government site, for me that counts for a lot.
It's not my intention to offend of provoke anyone, I know very well that many among us become defensive at the very idea of healing NLD, like it's being ashamed of yourself, or believe that it would make you into a different person overnight (it definitely does not, take my word for it). But I strongly believe that it would be immoral NOT to share my story, or to spread the word to anyone else suffering from NLD. I know as well as anyone here the hell that NLD puts us through, the decades of fear, pain and self-hatred I suffered, and it's almost universal for us to be suicidal at some point in our lives at the very least, to say nothing of depression, phobias, loneliness, insomnia, endless anxiety, stress and guilt that we dont deserve. I dont say this lightly or for shock value, I say it ibecause it's the cold hard truth. And If there is a legitimate treatment out there, the need to ease suffering is the absolute most important thing. Everyone is entitled to their opinion.
For those of you thinking that this is too good to be true, or wondering if I'm just a paid spokesman for a stem cell company, all I can say is that I have no financial interest in stem cell treatment and I make zero money doing this, I do this because its the right thing to do, I consider it a human rights issue. If my treatment hadn't had any effect I'd have been the first one to say it. Since I put my story online along with my phone #, I've been contacted by about 60 or 70 people, ranging from the US to Saudi Arabia to Australia. My only interest is in spreading the word about this LEGITIMATE treatment: while there are many illegitimate doctors and con artists out there, if done properly stem cell treatment can absolutely safe and miraculous. Everyone must decide on their own what they believe is true. My choices were my own, speaking only for myself, so take what you will from it, I dont claim to speak for anyone else.
I should mention that I'm not the only one with NLD who's been treated with stem cells. Less than 2 weeks ago, a young child with NLD was treated at Duke University in the US using their own cord blood stem cells. The family was inspired by hearing my story, Though it's too early to tell what effects the treatment will have, I am very very optimistic, and not just because I want to be. The treatment was done by the same Dr, Joanne Kurtzberg, who did the treatment of a boy born with CP, Dallas Hextell, who had extraordinary results, shown in the link that Horus posted awhile ago. You can look up "Dallas Hextell Today show amazing recovery" and you'll see.
Dallas lives in Sacramento about 15 min away from me, I've spoken to his family. God willing if the Duke treatment can do half for this child what my treatment did for me, they and their family could be spared many decades of pain and suffering. The family hasn't decided whether to go public yet or not, but they've given me permission to mention the treatment while also respecting their privacy. Duke seems to be open to treating patients for a variety of conditions, including NLD and possibly other ASD, as long as they have their own cord blood cells, though I believe they focus mainly on treating children. Still, if anyone has their own cord blood banked they way want to make a phone call to Duke.
I'm happy to discuss it with anyone personally, the best way to reach me is 916 849 1982 (California), Facebook or by Skype. Take care everyone, stay strong, bye
Hey Jeremy
I guess you know this is Anthony. I'm very happy to see that you decided to share your story on Wrongplanet. That said....it might be a good idea to re-post this (or post something similar of course) in the General Autism Discussion forum. This particular forum probably receives nothing like the amount of *traffic* that General Autism Discussion does. Anyway.....just a thought and it's up to you of course. Hope this finds you well and again.....thank you for everything you do and well....being you
07 Feb 2013, 2:29 pm
@Jeremy/Aries3,
Sorry....but for some stupid reason I THOUGHT this thread (not to mention that it's a thread I created!! ! ) was in the significantly less-active "Bipolar, Tourettes, Schizophrenia, and other Psychological Conditions" forum on this website. I didn't notice that it actually WAS in the "General Autism Thread" until recently. Perhaps it was merely a case "out of sight...out of mind" since there have been no posts in this thread for some time and it was on page 2. Or maybe I confused it (or maybe both of these reasons contributed to the mix up 
) with another poster's thread about NLD/NVLD IN the "Bipolar, Tourettes, Schizophrenia, and other Psychological Conditions" which is still on the first page of that forum. Whatever the case...I again apologize for the confusion and obviously you can disregard the suggestion in my previous post. Your post is in the most active forum on WP and that's exactly where it should be IMO
07 Feb 2013, 7:31 pm
Tyri0n
Veteran
Joined: 24 Nov 2012
Age: 38
Gender: Male
Posts: 2,879
Location: Douchebag Capital of the World (aka Washington D.C.)
08 Feb 2013, 1:40 pm
08 Feb 2013, 3:07 pm
To all,
I'm trying to see if the moderators will sticky this thread.
I sent one a PM about it....I really don't know how all that works 
08 Feb 2013, 4:37 pm
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