My Trip to Bangkok: Stem Cell Treatment [Comments]

#31
first hand experience
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Is no scientific measurement. First hand experience is your experience.

A treatment in medicine needs to prove its safety & efficacy (wherever possible) in double-blind randomized placebo controlled studies/clinical trials which can be reproduced multiple times by independent researchers yielding the same results with an adequate sample size of patients that match defined criteria. Thoroughly backened by prior theory and/or understanding of action of the supposed treatment. In case of stem cells probably a combined multidisciplinary approach of neuroscience, bioengineering and chemistry.

Single case reports lack ALL of the above features. This does not discredit them. People may share the same experience in many aspects of life.

But I think it is vitally important to understand the basics of how a drug or other treatment is tested in order to make a educated choice concerning wether or not they want to invest their resources into a novel or controversial approach in order to treat their condition. Unfortunately there are people out there that take advantage of other peoples desperation. Especially when it comes to conditions that are regarded as incurable.
 
#32
Hudson said:
@Luca,

If @attheedgeofscience has the means and the desire to pursue this it is not our place to judge it. In my mind 25k is a small price to pay for quality of life if it indeed works. This poster has been kind enough to share their experience with us and that action will only serve the members here to make informed decisions about their own tinnitus. Please keep that in mind when posting. I wish the best for @attheedgeofscience in his or her journey with this treatment option. I honestly hope it works.
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Very well put Hudson. I agree with you 100%
 
#33
#34
Luca said:
That is most likely because Wilden did the the audiograms. When I review the literature I come across things like:

"No statistically significant effect of LLLT on auditory function was found, as assessed by pure-tone audiometry, speech understanding, and TEOAEs. Additionally, no individual subjects showed any clinically significant change."

"Audiometric examination did not show a statistically significant difference between the two groups."

"No changes were detected in the audiometric threshold in both groups."

Source: The Effect of Low-Level Laser Therapy on HearingShawn S. Goodman,1 Ruth A. Bentler,1 Andrew Dittberner,2 and Ian B. Mertes

ISRN Otolaryngology Volume 2013 (2013), Article ID 916370, 9 pages http://dx.doi.org/10.1155/2013/916370

I think it is also important to know that most hearing tests at ENT's only go to 8,000 or in some cases 10,000 hz. I think that often times no impairmentis are found in this range in people with tinnitus but beyond 10khz there is damage, compared to the "good" ear.

Either way I hope your brave trial is successful in Thailand. Good luck.
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The topic of LLLT is not anywhere near as clear cut as you seem eager to make out. The studies discrediting it all seem to use a very low power output for a significantly shorter period of time. Off the top of my head one was something like 6 minutes once a week for 3 or 4 weeks at a very low wavelength and Wilden's protocol is something 600 minutes at a substantially higher wavelength. How can they be compared if the basic protocol isn't replicated? Unless there has been some new studies that I'm unaware of I don't thus far see the ones done already as disproving him just yet.

Some links for others regarding the statements made against Dr Wilden. They look similar but are two different pages on the same site.

http://www.tinnituspatient.de/ukindex.htm

http://www.tinnituspatient.de/ukluegen.htm

Anyway I do not feel it is appropriate to initiate this sort of discussion on this thread. Attheedgeofscience has very kindly decided to share his experience with us here at the cost of his own money. I for one am very gratefull that this person has decided to do this. Since he has already begun the treatment this tone of posting from you serves no purpose other then to irritate and create disruption. The process has already started so if you feel so strongly about this issue I would suggest making another a different thread to air your opinions.
 
#35
Luca said:
Is no scientific measurement. First hand experience is your experience.

A treatment in medicine needs to prove its safety & efficacy (wherever possible) in double-blind randomized placebo controlled studies/clinical trials which can be reproduced multiple times by independent researchers yielding the same results with an adequate sample size of patients that match defined criteria. Thoroughly backened by prior theory and/or understanding of action of the supposed treatment. In case of stem cells probably a combined multidisciplinary approach of neuroscience, bioengineering and chemistry.


Unfortunately there are people out there that take advantage of other peoples desperation. Especially when it comes to conditions that are regarded as incurable.
Click to expand...


Many treatments in Medicine have fulfilled the requirements you have listed yet lots have been taken off market for the detrimental effects they have had on patients. Yet were labelled safe and effective and passed clinical trials.

I agree with you though there are those that take advantage of other people's desperation. Neuromonics, TRT and Soundcure certainly spring to mind.

Now let's please get back to the original topic of this thread. If you do not like or agree with what the attheedgeofscience is doing then please create your own thread on the topic.
 
#36
disproving him just yet.
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There is nothing to be disproved, without proof.

He has been going on for years without coming forward to prove his therapy in a manner I outlined in previous post #31

If it is as effective as he claims it to be then all he has to do is come up with the evidence in a way that it is reproducible by the medical community. He has not done so.
 
#37
Many treatments in Medicine have fulfilled the requirements you have listed yet lots have been taken off market for the detrimental effects they have had on patients. Yet were labelled safe and effective and passed clinical trials.
Click to expand...

Yes this is true. Sample sizes can only be so big for a trial, even spread across continents. Not to mention delayed adverse effects. Liver problems is a typical one. Something that takes longer to develop and did not manifest itself in the trial.
 
#38
Luca said:
There is nothing to be disproved, without proof.

He has been going on for years without coming forward to prove his therapy in a manner I outlined in previous post #31

If it is as effective as he claims it to be then all he has to do is come up with the evidence in a way that it is reproducible by the medical community. He has not done so.
Click to expand...

If there is nothing to disprove why do you mention studies which claim to 'disprove' LLLT?

It is also quite easy to replicate the exact protocol Wilden uses. Yet so far his critics seem unable to do such a simple thing? It is illogical to use a much weaker strength laser for a significantly shorter period of time and then claim such and such a study proves LLLT doesn't work.

You are also either unaware or deliberately neglecting to mention the fact that it costs a signicant amount of money to go through the official criteria you mention and Dr Wilden does not exactly have the backing of a billion doller drug company or Government funds to fund him through it.

Now I kindly ask you again out of respect for attheedgeofscience if you feel so strongly about this issue you are welcome to make your own thread on the topic. Hijacking his thread like this taking it off topic is highly disrupting and disrespectful.
 
#39
I think you have already made your point crystal clear, @Luca.

Now instead of discrediting past treatments the fellow member has seemingly had success with or lecturing people on the basics of research methods, why not just support this man?

Most people here know that I have never been much of a proponent of laser therapy for tinnitus, but I do not feel this is the thread or place to ramble on about that.

If I were the person who chose to go through with a highly experimental treatment and report my experiences on a forum, I would not want the thread to turn into a debate whether I made the right choice while still being in the middle of the treatment.

Generally speaking, I wholeheartedly agree that desperate people tend to be the easiest and most gullible form of prey. It is really important to educate people, and there are a couple of threads for that here:
How to Spot Pseudoscience
A Primer on Scientific Testing

Actually I think a more prominent part of the site should be dedicated to educating people about just this. It is annoying how well many snake oil products and sham treatments sell because people do not know better.

However, you should respect @attheedgeofscience's emotional and physical state while he is abroad having treatment the consequences of which we really do not know yet, and to top it off, being so courteous as to share the journey with us.
We all know that whatever the end result is, it is anecdotal and conclusions on a larger scale should not be drawn from it.

I can only hope serious side effects are avoided and positive results attained.
May the force be with you @attheedgeofscience.
 
#44
Jade said:
Hi @gary,
Does Dana White and some of the UFC boys have T? and have they sought treatment for it in Germany?
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Hi Jade, Dana White had it real bad, A-Rod the baseball player recommended the clinic in Germany that uses stem cell. He claimed it helped his knee I believe. He told Dana to give it a try, Dana said he did and his T is cured, this was some six months ago. I tweeted Dana but never got an answer if his T was still gone. There is a video some where here on TT with him briefly talking about it. He went to the clinic where Dr. Wilden works out of.
 
#45
#47
erik said:
Whether you think Dr Wilden is for real or not in regards to stem cell therapy and hearing, he does have some interesting views on Tinnitus as you can read here http://www.dr-wilden.de/pdf/dgo_en.pdf
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In this paper, he talks a lot about inner ear cell regeneration and says mice subject to loud noise recover months after the trauma, yet, all other scientific papers don't agree with that.
 
#48
gary said:
Hi Jade, Dana White had it real bad, A-Rod the baseball player recommended the clinic in Germany that uses stem cell. He claimed it helped his knee I believe. He told Dana to give it a try, Dana said he did and his T is cured, this was some six months ago. I tweeted Dana but never got an answer if his T was still gone. There is a video some where here on TT with him briefly talking about it. He went to the clinic where Dr. Wilden works out of.
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I might be wrong about this but I don't think Dr. Wilden works at the clinic where Dana got his treatment, you might be thinking of Dr. Peter Wehling (http://www.wehling-hartmann.de).
 
#49
erik said:
Whether you think Dr Wilden is for real or not in regards to stem cell therapy and hearing, he does have some interesting views on Tinnitus as you can read here http://www.dr-wilden.de/pdf/dgo_en.pdf
Click to expand...

Thanks for posting this Erik. It's interesting to read something so opposed to current TRT methods. I think it is possible that he is right. It's been hard to guage the actual success of TRT because of 'people getting less anxious as time goes by' & 'the brain may have got used to T anyway, even without the TRT'. Also the help that comes from just talking to someone who is more interested than your average clueless GP.

His viewpoint on use of earplugs is also worth considering, as most of us think that we should use them only when absolutely necessary.
 
#51
@attheedgeofscience

Hope you are feeling well and upbeat, great to note that they were able to do something about the T in your left ear. and well as far your bums go, with soo many stem cells floating around ...5million of the magic bullets i am sure your butt will heal too ....;) ....just kidding....but hope you are doing just great and this works for you.

As @erik tagline says 'hope is a good thing, maybe the best of good things and no good thing ever dies" -Shawshank Redemption' . and this brings a lo of hope......I love this movie btw.....a must watch in these dreary times.

CHEERS & BEST OF LUCK
 
#52
click said:
His viewpoint on use of earplugs is also worth considering, as most of us think that we should use them only when absolutely necessary.
Click to expand...

I think he's wrong on that paragraph for earplugs. Your ears adapt the gain to the surrounding sound, they don't regenerate when you use earplugs they just adapt to hearing better low sounds, exactly like the gain nob on a pre-amplifier. If so, you could just pop in earplugs for a few days and tinnitus would dissapear ?
 
#53
Hi @attheedgeofscience,

Great to read your posts and really looking forward to your entries. I was just wondering on a few things which you can ask the doctors there for me:

1. How do they calculate the dose of stem cells needed
2. What happens to the excess stem cells in the body that are unutilized
3. How much of these stem cells are absorbed and finally the particular type of stem cells being administered to you are they known to get converted to inner hair fibres or are they a general type (particularly interested since you said they are treating tinnitus for the first time)
4. And finally what is this peptide they are injecting you. How do they think that works

Oh and on the scan, any specifics on how they determined the T to be inner ear and finally did you notice improvements in your hearing and T as your post suggests after modification of frequencies with the scanning device.

I know it's a lot of questions and sorry if it sounds a bit like an interrogation, but I am really excited about this development. Hope to hear from you.

(This was originally a pm. @attheedgeofscience requested I posted it in public for everyone's benefit.)
 
#54
Here goes:

1. For adipose stem cell treatments they use 1.5 million stem cells per kg-of-body-weight (per injection). For cord blood stem cells, they use a flat rate of 5 million stem cells per injection (regardless of body weight). The total treatment is 20 million stem cells for cord blood stem cell treatments (which may be increased to a total of 30 million if the stem cell treating physician deems it necessary).
2. The protocol that the clinic uses has been developed as they researched injections with a stem cell count beyond those stated in #1 above will be excreted via urine (much like taking too much vitamin).
3. If there is an area of injury, then the stem cells travel there by using the peptide homing signals. If not, I believe, that the stem cells are stored in the bone marrow (but I need to check this one). The stem cells I am receiving are the most potent - and have the potential to turn into any kind of cell in the body.
4. There many types of peptide injections used in stem cell therapy - I need to check the name of the one they use for me. They also call it a growth factor (meaning that it is supposed to activate the patient's own bone marrow stem cells and create a synergy effect with the cord blood stem cells - however, when I asked the stem cell treating physician, he explained that they are used as a guiding signal for the cord blood stem cells).

Tomorrow, I will post pics of the bio scan. Essentially, each area of the body is scanned and the result shown in real time in front of you on a screen. In my case, the inner ear area showed an energy level of 5 for both left and right ear (the scale goes from 1 - 6; 6 being the worst). The device cannot tell when the deterioration occured - it could be 10 years ago, or 10 minutes ago. After attempting a correction of my energy levels, the inner ear read 4 on the left side (in 6 different places): 23% improvement according to the device. The right ear continued to show an energy of 5 in the 6 different places - except for one place which had changed to a level 4: 13% improvement according to the device.

I would like to comment on any improvements that I feel I have may or may not have had, but I have chosen not to do so, until I am certain that any improvement that I may experience can be considered real or lasting, if you will.
 
#55
@attheedgeofscience,

I have a couple questions because I think the answers will be relevant to your treatment journey as it occurs. You have said before that you have some slight hearing loss at high frequencies, but I think from what I have gathered that is what you have said.

1. What is your tinnitus like? Is it high pitched, a buzzing, ringing, or roaring? Are there multiple tones? Does it wax or wane through time or is it constant?
2. Do you have sound sensitivity (Hyperacusis)? Do your ear(s) ever react to sounds, such as your ear drum tightening up or fluttering due to stimulation?
3. Do you have pain in your ear(s)? If so, is it constant or intermittent?
4. Do you have a feeling of fullness in your ears, such as the need to pop them frequently?

I ask these questions because now may be a good time to get a baseline of multiple factors so that you can accurately assess the outcome of your treatment. I am assuming this has been done or is being done at the clinic (hopefully periodically throughout your treatment). I know I may be asking some specifics, but a back story may help others decide in the future if their symptoms are like yours, compare it to your outcome, and what options they may have. I appreciate it!
 
#56
Regarding ear plugs , I know ONE person that got rid of his T in two years , he used earplugs almost all the time, always when driving and when sleeping ..no idea if that actually contributed to his cure ?
 
#57
RaZaH said:
Regarding ear plugs , I know ONE person that got rid of his T in two years , he used earplugs almost all the time, always when driving and when sleeping ..no idea if that actually contributed to his cure ?
Click to expand...

I'd believe it. Almost anyone I know who has had it "go away" has literally just avoided any sort of sound that even might cause their ears to get a little annoyed.
 
#58
Would it make sense that this would sort of "reset" your "silence threshold" ? Sometimes I feel that holding my ears closed for about 5 minutes actually helps , maybe sounds do cause an irritation , sort of agitating the broken hairs ?
I might not be making any sense. :confused:
 
#59
RaZaH said:
Would it make sense that this would sort of "reset" your "silence threshold" ? Sometimes I feel that holding my ears closed for about 5 minutes actually helps , maybe sounds do cause an irritation , sort of agitating the broken hairs ?
I might not be making any sense. :confused:
Click to expand...

I don't think this is accurate, but of course I'm speculating. The hypothesis is that for the majority of tinnitus cases, while it may start in the ear, it eventually becomes a neural problem within the brain (especially for chronic tinnitus cases). If you look at the data on those with hyperacusis, the vast majority of them also have tinnitus. Many of these people will often avoid sound and use ear plugs very frequently. It often has the undesired effect of lowering their sound tolerance threshold. What is worth note, however, is that most of these people do not cure their tinnitus by depriving their auditory system of stimulus. In fact, it can cause the brain to focus more on it due to lack of input.

There have been studies that show many people report tinnitus sensations when put in sound deprivation rooms or wear ear plugs constantly. I remember reading one study where participants wore an ear plug in one ear constantly for an extended period of time while not wearing one in the other; many of these participants reported hearing phantom sounds in the affected ear. The point is that the auditory system is not meant to be deprived of stimulus. I'll see if I can find some of those papers tonight and post them if you're interested in a link.

When I overused ear plugs when I first got tinnitus, it didn't help me in any way. I remember it only caused me to focus more on the sound. When I stopped using ear plugs in unnecessary sound levels, my perception of the tinnitus dropped greatly and I habituated to the sound. I got to the point where I didn't care about it at all, barely noticed it, and became complacent around sounds where I should have used ear plugs. Of course, if you are around sounds that are loud in any way you should use ear protection. However, normal, every day sounds are not to be avoided IMO. I would suggest finding that balance of what your ears can tolerate while still being responsible about protecting your hearing. That is my experience.
 
#60
I am thinking I am not going to wait for the results, I want to go now.
There's music to be made and a life to live and this just isn't working for me anymore.

@attheedgeofscience , could you please send me the relevant info in PM. I would appreciate that so much.
At least it will be a nice vacation although expensive but at this point I don't care.
Luckily I have the cash and might as well spend it on this rather then the multitude of quacks I have lined up. With this stem cell stuff ,as I see it , worst case scenario I might grow another hand or something, that way I can at least join the circus.
 

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