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Tyri0n
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08 Feb 2013, 5:47 pm

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Imgonna try nootropic drugs for mine first.

And yes, NVLD needs to be cured. It sucks like all hell not being able to do things like drive to the damned store without loading up on stimulants.


Could you explain more what you mean by nootropic drugs for NVLD?

I wonder if curing NVLD through stem cell therapy would also effectively eliminate clinically significant levels of Asperger's in many people with a mild form of it.[/quote]

Look up piracetam, noopept, phenylpiracetam, etc. Basically they're drugs used to improve functionality in people who've, say, have Alzheimers or blew their brains out with alcoholism. They seem to work by increasing choline uptake in the brain. Too much to really explain. They're available here in the States, but unapproved by the FDA.[/quote]

Interesting. I live in a border state, so I could probably get them easily regardless. Something to look into because Asperger's/NVLD and right brain injury often have very similar effects, so maybe at root, they are the same thing...



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18 Feb 2013, 6:14 pm

To all,

Jeremy Lowey ("Aries" here on WP) just posted the following in an NLD/NVLD facebook group I belong to:

"
Hello,

Many of you know that in 2011 I became the first person ever to have adult stem cell treatment for NLD, and it was absolutely miraculous. Today, I am no longer the only one. 3 weeks ago a friend of mine, whose name I wont use, had the cord blood treatment at Duke University in the US for their child who will soon become a teenager. I've been in regular contact with the family, and they've given me permission to talk about their story while also respecting their privacy.
Though it's too early to draw any big conclusions, there have been several very promising signs so far. The mother reports that (much like me) her child is feeling markedly less anxious and their insomnia (common amond NLDers) has gotten much better, and that their homework is being done in less than half the time it took before. The treatment was done by the same Dr, Joanne Kurtzberg, who did the treatment of a boy born with cerebral palsy, Dallas Hextell, who had extraordinary results, shown in the links:

http://www.today.com/id/23572206/site/t ... SAHaPKbWtY
http://articles.latimes.com/2008/apr/07 ... he-cpalsy7
http://www.youtube.com/watch?v=PT4ydxom ... re=related

The Hextell family lives near me in Sacramento, I've spoken with his family and his story is true

The Duke University program offers cord blood stem cell treatments for patients who have their own banked cord blood (or their child's), for various conditions (including NLD now). I believe they mainly focus on treating children, but they may be open to adults as well. Since there are stem cells in the cord blood, they have the ability to become any tissue in the body. And since the program uses the patient's own cord blood, there is virtually zero risk of rejection or other side effects.
The family made a brave decision and they deserve respect. God willing, if the Duke treatment can do half for the child what it did for the Hextell boy (or what my treatment did for me), there is an extremely real chance that the child could be spared an enormous amount of suffering. I do not want to sound like an infomercial, but I absolutely believe it is very important to spread the word about this treatment with the potential to heal the source of NLD in the brain (which is believed to be caused by lack of myelin). The family told me that they wouldn't even have imagined the treatment if I hadn't shared my story. While there are certainly no guarantees and I am careful never to use the word "cure," and it's absolutely true that there are many, many scam artists out there peddling alleged stem cell treatments that are often useless of dangerous, the fact that this particular treatment is being done by a widely respected American university says a lot about its legitimacy. I'm amazed that this program is not more widely known.
To follow up on my own treatment, in 2011 I had adult stem cell treatment for NLD performed by Dr. N.K. Venkataramana in Bangalore, and it was nothing short of life-changing. I had neurological testing done several months later that confirmed that I'd had massive improvements in multiple areas of mental functioning, including executive function, visual spatial, holistic functions, attention span, changing gears mentally, multitasking etc. I'm happy to provide details if anyone likes, just ask.
BTW, I just came across another apparent stem cell success story from Duke, also done by Dr. Kurtzberg, near my hometown of Sacramento, this time for Cerebral Palsy:

http://sacramento.cbslocal.com/2012/08/ ... or-autism/
http://www.foxnews.com/health/2012/08/2 ... ord-blood/
http://www.news10.net/news/article/2060 ... eat-autism
http://www.youtube.com/watch?v=FUozCdym ... e=youtu.be

I wanted to share this wonderful news with all of you, I sincerely hope this becomes a mainstream treatment for NLD in the very near future. I am looking into starting a foundation to help those with NLD or other conditions raise money for stem cell treatments, for me there is no doubt that it is simply the most moral thing I can do with my life. I know from my own experience that the treatments, when done by a legitimate Dr., can allow those in our community to drive a car, read body language, hold a job without the day in day out fear of getting fired, and much more. In short, it can prevent a lot of pain for many many thousands of people across the globe. I welcome your comments and questions of any kind, take care everyone, stay strong".


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dutchasper
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02 Jul 2013, 11:09 am

Verry verry verry interesting matter !

Im also considering it (and searching where to go) because the suffering and frustration from nvld is much much more then alot could imagine !

Even if it would include risks which i dont see based on the previus treatments id do it because everything is better then the misserable suffering from nvld !

If there are new developments on this theme please let us know ! !!

Also pm is verry welcome !



dutchasper
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03 Jul 2013, 7:10 am

why so little animo for this subject ? 8O



Tyri0n
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13 Jul 2013, 1:27 pm

Most people here are anti-cure (about 2/3) and want Asperger's to be accepted as a difference, not a disability. There is a fear that whatever is used for NLD could be used for Asperger's too.



Verdandi
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13 Jul 2013, 4:31 pm

Don't confuse "anti-cure" with "wants AS to be accepted as a difference, not a disability."

I am not in favor of a cure because I do not want to change who I am. However, I do acknowledge that autism is a disability. I also do not expect everyone to agree with me.



dutchasper
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07 Dec 2013, 5:55 pm

1000Knives wrote:
I'm gonna try nootropic drugs for mine first.

And yes, NVLD needs to be cured. It sucks like all hell not being able to do things like drive to the damned store without loading up on stimulants.


Thats recocnizable :oops:



dutchasper
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misha00
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17 Nov 2021, 3:13 pm

Why is there only one person who benefitted posting here?

Just wondering if anyone else has tried non-embroynic Stem Cell treatment for Autism/NVL in India or elsewhere abroad of the western world.



carlos55
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17 Nov 2021, 3:46 pm

The simple answer is its a new thing sometimes it may be partially effective many times not and possibly not without side effects.

It also has a dubious reputation as a possible scam at worse. No offense to people who live in these countries of course but why are these clinics in Central America & India and not NY or London?

The truth is the science is in its infancy and has a long way to go, the future of gene therapy for autism is bright but not quite there yet.

https://www.science.org/content/article ... rms-autism


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17 Nov 2021, 4:05 pm

 FDA Warns About Stem Cell Therapies 

The facts: Stem cell therapies may offer the potential to treat diseases or conditions for which few treatments exist.  Sometimes called the body’s “master cells,” stem cells are the cells that develop into blood, brain, bones, and all of the body’s organs.  They have the potential to repair, restore, replace, and regenerate cells, and could possibly be used to treat many medical conditions and diseases.

But the U.S. Food and Drug Administration is concerned that some patients seeking cures and remedies are vulnerable to stem cell treatments that are illegal and potentially harmful.  And the FDA is increasing its oversight and enforcement to protect people from dishonest and unscrupulous stem cell clinics, while continuing to encourage innovation so that the medical industry can properly harness the potential of stem cell products.

To do your part to stay safe, make sure that any stem cell treatment you are considering is either:

• FDA-approved, or;
• Being studied under an Investigational New Drug Application (IND), which is a clinical investigation plan submitted and allowed to proceed by the FDA.

Potential safety concerns for unproven treatments include:

• Administration site reactions,
• The ability of cells to move from placement sites and change into inappropriate cell types or multiply,
• Failure of cells to work as expected, and
• The growth of tumors.



dutchasper
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31 Dec 2023, 4:03 pm

https://www.youtube.com/watch?v=GGjLPy2pHRg

https://msutoday.msu.edu/news/2013/shed ... C58Qa.dpuf

If somebody can get this information to Dr. Joanne Kurtzberg, that could help us alot ! or DR. N K VENKATARAMANA as well.



carlos55
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01 Jan 2024, 2:37 pm

Aries3 wrote:
Hello everyone, my name is Jeremy Lowey, some of you know that I had adult stem cell treatment for NLD in 2011. I wanted to join the conversation about stem cells and NLD.
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


Mr 1 comment, i bet this was a fake post lol :D

Has anyone else done stem therapy here?


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autisticelders
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01 Jan 2024, 7:01 pm

desperate people will pay big $$ for miracle cures, if it seems too good to be true, then it likely isn't true.


https://consumer.ftc.gov/consumer-alert ... apy-claims


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