I was wondering if anyone other than Phil had used the Shark cell injections and what their experience was?

The only thing I've heard about it is that it can be very expensive.

Hi Debi,


Unless everything we know about biology is wrong, there's virtually no way this kind of xenotransplantation can work for HD.



Jeff

And yes, it is very expensive. Phil pays for his supply by selling the stuff to others, it really is a scam and im not scared to say that

Not even heard about this before, could someone smart explain please.

[www.hdyo.org]

Oh Matt, what a can of worms.... could ya Google this one? "Huntington's disease shark cells" should work.

I prefer opening the can Eric, it's much more fun.

[www.hdyo.org]

I'm 1/2 way smart, and I can explain 1/2 way by saying it don't work! And Barb is right... He's a nice man, but SCAM

Matt - Inside the can is a CAG of 39. That may account for his lack of symptoms.

Will

I see, if he's a good man then why would he con? :/ Am I missing something. Anyway, it all sounds very "deep blue sea" to me... anyone seen that film? lol

[www.hdyo.org]

This one got too much air-play already on here. Phil is a good guy, and I don't think he is a con. The "con" comes before him. Phil just has a lot of emotional investment in this.

I am very fond of Phil and I know that he believes in the effectiveness of the injections. However, I cannot think of a rationale as to why they would work. Phil thinks that it may be a result of an activation of the immune system but I don't think that that would achieve a positive result throughout the course of the disease.

I do know that the Mexican doctors associated with the injections give a rationale that does not make any sense at all. They talk about how healthy sharks are and how they don't get cancer. Actually they do get cancer. And we are not sharks so why would an injection of shark cells into our bodies help our brains? What could our body possibly do with them except reject them? This is a very old 'treatment' dating back to the 1920s when aging wealthy people went to European spas for injections of cells from chicken embryos to achieve eternal youth.

What might help the brain is an injection of HUMAN mesenchymal stem cells into the brain. As I have reported earlier, there is going to be a clinical trial the end of this year, providing the FDA is satisfied with the animal data.

I think it makes you stop blinking and then eat baby seals.

These alternative therapies pop up all the time. I have decided that some people you can't save from themselves. There will be a certain percent that bite. Probably less than a percent. I have taken a new attitude of looking at questions I have about whatever... ask for the science... requestion if it makes no sense, and then forget it. 99.9% know something isn't right. The one person every so often is focused on finding something, anything, that cures them. If it's not this it will be something else. I actually have a lot of faith in people here knowing their stuff. I used to be worried someone would get suckered... not because they weren't smart but because they were desperate. But people here are not desperate.. the desperate people are scowering the internet all day every day looking for this this stuff. Debi just had a question... and I was waiting for Marsha to answer it. It wasn't a bad one and I am sure Debi heard what she pretty much expected to hear... she was just checking. That's what Marsha is here for. Solid answers to questions of good faith.

Thanks to everyone who replied to my question. I was hoping to find someone who had actually taken the injections. Although I didn't get the reponse I was hoping for it was very entertaining. All is not lost if we can still laugh, I appreciate all of your insights and opinions.
Hope everyone has a great weekend.

Hi Debi,


Glad we were entertaining.

For anyone else, there's a serious issue here about how to look for therapy. Anecdotal stories are not a good way to look for therapies for a bunch of reasons.

In the first case, sometimes people are selling things and so are financially motivated. That's been covered, and I don't know Mr. Hardt, so I won't say anything about that.

In the second case, the placebo affect is amazing. There are PET imaging studies looking at the release of dopamine (the brains reward chemical) after placebo administration, and the results are striking. The brain lights up with dopamine after a saline injection. This is really confusing when the disease you're studying (like HD or Parkinson's) has major dopamine involvement. Placebo treatment has real effects - it's not just "all in your head". Well, technically it's in your head, but you know what I mean.

The point of this is that there is a lot of crap on the internet. Getting any kind of treatment, and especially a neurosurgical one, based on anecdotes is a super *bad idea*. The gold standard of evidence is a placebo controlled double-blind trial. If this Mexican clinic could do what they're saying they do, it would be simple to run such a trial, and they'd all be super rich. Why on earth wouldn't they do it? Because it doesn't work. It's the only logical answer, based on what we know about peoples motivations. Listen to the voice in your head that's saying "it's too god to be true".

But I'd love to be wrong, and look forward to reading the report of their successful trial.



jeff

I wasn't worried... Debi had the little voice or wouldn't have asked.

Hi Deb. This is Phil Hardt. I would be happy to give you names and information on other Person's with HD who are taking the injections so you can contact them. Please e-mail me at phardt1@cox.net. You will get a lot more reliable answers to your questions from those of us who are taking the injections, instead of those who know nothing about them and chose to be negative. Have a great day....Phil (For the others on this thread: Yes, I only have a CAG of 39. Oh darn. The start of HD has been dropped to 36 for 5 years now. I also personally know several individuals who had a CAG of 36 and 38 who unfortunately have already died in their middle to late 40s. It's too late to tell them that they ONLY had a CAG of 36 or 38. Will, hopefully the next can you open will contain spinich- what's your CAG anyway?)

For those of you who don't know me, my picture and guidelines to help those struggling with HD are on the front page of the HD Lighthouse at www.hdlighthouse.org. Scroll down and look on the right had side of the page!

You can also look on the front page of this very website too. There you will find 3 recent scholarly articles I've written inclduing: "Using the Neuropsychological Exam and Other Tools To Help Those Struggling With the 'Softer' Symptoms of Huntington?s Disease," "Sub-Cortical Frontal Dementia in Huntington's Disease," and
"Persons with Huntington's Disease Jailed in Juan De Acosta, Colombia, South America, Part 1."

Elsewhere on the HDAC site you will find several other articles. I hope you enjoy getting to know me a bit better........Phil

Oh yes, no subsequent pages of the HDAC website you'll also find my "Testimony before the Secretary's Advisory Committee on Genetics, Health, and Society." One of 7 chosen from the U.S. to participate. This testimony and subsequent usage of my testimony on the Senate and Congressional floors resulted in GINA!

You'll also find: "Mitchell Urges Support of Stem Cell Research"
by Marsha L. Miller, Ph.D. on 01-12-2007 and "Actor Michael J. Fox Stumps for Candidates and Stem Cell Research in Tempe, Arizona 11/6/06." Remember his visits around the country?

Lastly, you may also enjoy "Hitler's 'Cure' for Huntington's Disease."......Phil