Stem cells heal autoimmune hearing loss

[stemcelldeaf]

Someone asked if I've heard back from RNL Bio. Jin Hong just replied yesterday, 7/13/10:
Hi Renee,

One patient with tinnitus not hearing loss received stem cells in early May.
We will follow him up for the next a few months. Two minor patients traveled Japan for the stem cell therapy. One finished injections and the other will start soon. For these kids, they have had hearing loss at birth. We didn't recommend stem cells for them but the families wanted to try it. Other two adult patients with hearing loss will travel to Japan in Aug or Sep. The result will be available after the end of this year.

Thanks,

Jin

more recent update from RNL:

I have one good news for you. We had two minor patients who recently received stem cells. They have had sensorineural hearing loss since birth. One 10 year old boy of the patients experienced significant improvement just within a month post transplantation.

 

[Renee]

RNL Bio

That is excellent news! 1) if I read correctly he was deaf and 2) Deaf since birth and is 10 years old now. so that gives me hope since I've had to wear hearing aid since I was 21 and I'm in my 40's now. They weren't sure if this would work...if you "waited" too long.

 

[barbara]

This is exciting news. Thanks for keeping us updated on this.

 

[stemcelldeaf]

That is excellent news! 1) if I read correctly he was deaf and 2) Deaf since birth and is 10 years old now. so that gives me hope since I've had to wear hearing aid since I was 21 and I'm in my 40's now. They weren't sure if this would work...if you "waited" too long.

Anyone has update from RNL? RNL promised to provide audiograms for the little boy, but I got no response for weeks.

 

[barbara]

Maybe, it was too good to be true. I would bug RNL a couple more times just to make sure, but after that, I would have serious doubts as to the validity of this report. If this actually happened and was documented, they should want to be shouting it from the rooftops and providing information when requested.

 

[Deaf123a]

Anyone has update from RNL? RNL promised to provide audiograms for the little boy, but I got no response for weeks.

I also emailed RNL last week and he said they are waiting for the father to share the audiograms. He can block out the boy's name for privacy. Ive seen Chloe's audiograms(before, after) and her improvement is nothing short of amazing! I might get stem cells in 2011 if I get to see his audiograms and the audiograms of a few other success cases. Otherwise ill keep waiting for more results with audiogram proof as I want to know how much improvement to expect.

Also in the email I got, RNL says they don't do direct injections into the eardrum as it's too risky. I thought they did that with Chloe? Im curious if they did a direct injection with that boy or just stem cells by IV? I need to know if a direct injection is a must for any significant improvement.

There's still alot of people against stem cells and others who are skeptic. I am pro stem cells and will be the second wave of pioneers after I see results of the early pioneers. Chloe's case is high profile and public. Perhaps the boy's parents want privacy, if so, they won't be on the news and youll only know by contacting RNL. I will go public(on my blog, in this forum and all over the internet) with stem cells if it works for me. I already have a blog on it: http://deafdude1.blogspot.com

 

[stemcelldeaf]

Deaf123a,

Could you please share Chloe's audiograms you have seen? Private message please if you think you are unable to make it public.

I also emailed RNL last week and he said they are waiting for the father to share the audiograms. He can block out the boy's name for privacy. Ive seen Chloe's audiograms(before, after) and her improvement is nothing short of amazing! I might get stem cells in 2011 if I get to see his audiograms and the audiograms of a few other success cases. Otherwise ill keep waiting for more results with audiogram proof as I want to know how much improvement to expect.

Also in the email I got, RNL says they don't do direct injections into the eardrum as it's too risky. I thought they did that with Chloe? Im curious if they did a direct injection with that boy or just stem cells by IV? I need to know if a direct injection is a must for any significant improvement.

There's still alot of people against stem cells and others who are skeptic. I am pro stem cells and will be the second wave of pioneers after I see results of the early pioneers. Chloe's case is high profile and public. Perhaps the boy's parents want privacy, if so, they won't be on the news and youll only know by contacting RNL. I will go public(on my blog, in this forum and all over the internet) with stem cells if it works for me. I already have a blog on it: http://deafdude1.blogspot.com

 

[Deaf123a]

Hi, I sent you a PM. I read your earlier posts and notice you did get 60 million stem cells for 5-10db improvement. That means 10m cells=1db improvement. Thus 600m cells=60db improvement? As for the delivery, you got them all by IV, but no direct injection into your ears, right? RNL bio doesn't recommend direct injection due to the risks. When do you plan to try RNL bio? 2011? 2012? How well are you currently hearing with your HAs before/after your first stem cell treatment for sounds? Speech?

 

[stemcelldeaf]

Hi, I sent you a PM. I read your earlier posts and notice you did get 60 million stem cells for 5-10db improvement. That means 10m cells=1db improvement. Thus 600m cells=60db improvement? As for the delivery, you got them all by IV, but no direct injection into your ears, right? RNL bio doesn't recommend direct injection due to the risks. When do you plan to try RNL bio? 2011? 2012? How well are you currently hearing with your HAs before/after your first stem cell treatment for sounds? Speech?

I got all the cells through IV, no direct injection into ears.

 

[Deaf123a]

Let me know if you recieved the emails. Also when do you plan to try RNL bio? 2011? 2012? How well are you currently hearing with your HAs before/after your first stem cell treatment for sounds? Speech?

 

[Renee]

Update from RNL Bio 9/16/10

update from RNL BIO on 9/16/10

Hi Renee

Yes, but I'm waiting for his audiogram. I will let you know when I get it. However his condition is quite different. He was born with hearing loss. Thanks.

Jin Hong, PhD
RNL Life Science, Inc
301-661-2279

Sent from my iPhone

On Sep 15, 2010, at 10:36 AM, "McGuinness, Renee D" <renee.d.mcguinness@boeing.com> wrote:

> Jin,
> I heard that one of the patients was a young boy (10 yrs old) and was deaf, yet the stem cells improved his hearing..significantly or how much?
>
> What about the other patients? Any word?
>
> Thanks,
> Renee

I'm confused now. Someone got a response from RNL Bio and at that time, the child that was deaf at birth (unless both of them are) he already had info regarding hearing improvement for that patient. Now, RNL is telling me "waiting for his audigram".

 

[Deaf123a]

I also don't know and im waiting for his audiogram as well. If you get it, please PM or email me his audiogram. I might get stem cells from RNL in 2011 if I get to see his before/after audiogram and also learn the results and audiogram from the other pioneers.

 

[Renee]

RNL Bio Update

I've asked Jin from RNL bio for the audigrams from the 4 people that went through the stem cell treatment specifically for hearing loss. His response on 11/4/2010 was:
************
Hi Renee,

As I mentioned earlier, I am still waiting for those audiograms from my clients. As they paid in full for their therapy, there is no way to force them to get each audiogram other than asking. I think there is no reason why they would avoid to get one.

Best,

Jin
**********************
I don't know why but maybe it's like a good vacation or a lot of things "good" that happen...people don't send out any information. but, if something BAD were to happen, you always hear about it.

 

[yorkere]

The Need for Audiograms

This situation sounds crazy to me; there has to be a way to ensure that these patients respond...maybe the prospect of a rebate of some kind would provide a proper inducement. Or possibly a follow-up to their doctors to request these tests be done & provided?

There's a lot riding on these treatments to admittedly a very small group of people...I wonder if any requests were made in writing, or just a single phone call to these patients, or maybe NO follow-up was done, & they are simply waiting...(?)

Robert

 

[barbara]

I agree that some incentive might be a way to get them to respond, if that is truly the problem. This is why no or very low cost studies or clinical trials where patients agree to certain terms to participate can be advantageous for a company in the long run. Unfortunately, some do not have the funds to do that and others do not see the value, which is shortsighted if you ask me.

 

[Deaf123a]

There's an excellent chance of getting before/after audiograms from at least 2 of the 4 people and at least a description from everyone. The description may be along the lines of "I had a severe hearing loss and could hear very little without hearing aids. Stem cells has greatly improved my hearing and I can hear alot without hearing aids and hear perfect with hearing aids" Someone with bad news may say "I achieved very little improvement, yea things sound a bit louder thru my hearing aids but I expected much more"

I would consider no news as being worse than bad news, it will make me suspect something is being hidden and ill assume the worst, such as the patient losing all his hearing(very unlikley if he didn't get a direct eardrum injection) or developing a serious side effect from stem cells(wrong stem cells used?) or something used(contaminated equipment?) when treating him.

I can also say that the floodgates will open once a few dozen pioneers make public(Chloe is the best example) their amazing success for treating hearing loss. I am seriously considering getting stem cells in 2011 if all 4 pioneers share their success with before/after audiograms, else ill keep waiting. Me and my parents want to make sure there's an excellent chance for a 20-40+ db improvement before we spend a small fortune.

 

[yorkere]

Audiograms

I myself simply cannot understand the mindset of someone who has paid a rather huge sum for this (at this time) unique treatment, & remains silent regarding the outcome so far...

There's no way to determine who these people are, huh? Could RNL BIO be persuaded to at least CALL these people to request some feedback from 'em?

Robert

 

[barbara]

If I regained my hearing, I would want the world to know so that others could be helped, however, there are some that are too "busy" as I have found out to share their stories. I can't imagine that all of these patients would have that mindset however. The company is remiss in my opinion for not having patients agree to post treatment follow ups. Good or bad, how can they evaluate without knowing what hearing the patients actually regained? They should do a clinical study with other patients to verify these reports if nothing else. Otherwise, I remain highly suspect of what is going on.

 

[yorkere]

Barbara:

I definitely agree with you; the lack of reports of results renders these events "highly suspect" indeed....the only conclusion I can presently come to is to very reluctantly consider any of these news tidbits as highly probable bull****
and that is hugely unfortunate. I have a personal & highly INTENSE interest in this particular application...

Robert