let fight the evil KD disease together,
Even ASC-J9 in trail, 4-5 leuprorelin injection/year also required, not only GAC repeat number ,also the concetration of AR and teleston, the sexactivities numbers , all the above will decide how progress the KD

lori, interesting response. it's a tradeoff -- sex vs. strength. Deciding to eliminate sexual capability must be a joint decision; if the marriage dissolves because a male is castrated, i don't think it's a good idea. you may be more accepting than many other women.

Leon, I've been busy lately so haven't kept up on this post. Are you in a clinical trial testing the various degree of chemical castration drugs on KD? I'm eager to find out if this approach stops the progress of KD or slows it down?

I think that the talk of castration as a method to treat KD is quite premature. The published results dealing with the use of leuprorelin or dutasteride to combat KD in humans did not result in significant improvement in most of the parameters measured. As Bruce earlier noted in this thread, the only significant change was noted in swallowing - and the effect was so small that it was not clear if it was noticed by the patients.

While testosterone is required for KD, there is no certainty that castration will prevent or reduce the muscle weakness in human patients with advance signs of KD. The fact that it works in preventing the disease in mouse models is no guarantee that it will work in humans. The effect of leuprorelin on the mouse model of KD was quite striking but it had only minor effects in humans. Since leuprorelin is essentially 'chemical' castration should make one very careful before do the real thing.

hi my buddy,
just coming back from oil site, i inject leuprorelin once a month, for me at 39 years old, early stage of KD with GAC 46 repeat, every 4 month, stop for one month waiting the testosterone coming back,
and reduce eat meat which reduce the protein,
waste sugur make u dibities, waste protein can increase the AR and testosterone

morning green tea flush, and red wine clean blood waste,

wait for the stem cell treatment,

Ed I hear your concerns on this issue and one should use discernment. I also think its healthy to not only consider results from clinical trials/studies, but also to learn from others like Leon. I find it encouraging to learn from their struggles people who are willing to venture out to make choices that some of us may not understand or would choose for ourselves.

I personally don't think stem cell treatment is advance enough to warrant the risk. But if others think differently and are working with their doctors then I wish to learn from that if possible.

Fisher, thanks for your reply. I am not sure that I was completely clear in what I wrote previously, so let me clarify what I meant to write.

When one chooses a treatment for any disorder or disease, one should consider two major factors, the benefits (does it work and how well does it work?) and the costs (including physical, mental and monetary costs). If the benefits outweigh the costs, then it would be a reasonable decision to start the treatment.

Let me give a silly example. If I were to tell you that when ever I wear a green shirt, I feel stronger and better than when I do not wear a green shirt - I would expect you would think this to be a bit odd but I should do whatever I thinks works. Because of these feelings, I have decided to always wear a green shirt in the hope that it actually makes my KD better. Let us further suppose that there was a clinical trial that demonstrated the color of the shirt does not have any effect on my KD. I might still wear my green shirt because I decided that the benefits (I feel better - an example of the placebo effect as it was demonstrated that green shirts were not effective on the physical signs) are worth the costs ($22.95 at Target). Plus, I could always stop wearing green if I eventually realized that I was not really getting better. I would expect that others might think I was odd to wear green but they would think, it does not really hurt anyone to wear green (the costs are low) and maybe the clinical trials are wrong (very doubtful) and they might wear green just in case it really does work.

Now imagine, I was told that I could treat my KD by having my two thumbs removed. It is possible that if I were to have that done, I might feel better. However, if a clinical trial indicated that removing thumbs had no effect on the progression of my KD. I would not expect others to have their thumbs removed as they would reason that the cost (the permanent loss of thumbs) is much too high for the benefits (just feeling better - but no effect on my KD). The fact that I say that I feel better does not change the fact that physically, the removal of thumbs did not improve my condition. I would hope that others would realize that my feelings were just that, feelings and they will not last. Eventually, I would come to realize that removing the thumbs was a waste and then I would feel awful, for not only is my KD still progressing but now I have mutilated my body needlessly. If I knew that, in light of the results of the clinical trial, that someone I knew was still considering having their thumbs removed, I would considered it ethnically my responsibility to advise them not to do it. I would expect others to feel that way too - as the costs are much too high for any perceived benefits.

My comments in the previous post dealt with the possible use of castration as a treatment. This is a gray area in terms of the possible effects on KD. I was trying to point out that the possible benefits of castration are likely to be minor while the costs are great (testosterone does much more than simply allow a man to have sex). In addition, since castration is not reversible and if the effects of castration on KD were minimal, the individual who chose castration may feel even worse then they did before the operation. In addition, there is a treatment that mimics castration and has been shown to have effects (albeit minimal) - the use of leuprorelin. It would seem much more prudent to, in concert with your physician, to use leuprorelin instead of castration. If one finds the costs of leuprorelin are too high, they can always stop taking it. I sometimes get the feeling that when ones talks of castration, one expects their body to revert back to a form of 10 or 15 years earlier - and that does not seem to be the case. Since it is likely that the benefits of castration can be achieved at a much lower cost by using leuprorelin, I feel that the costs of castration are much too high for their possible benefits. I feel that it is important that one understands the risks and benefits of any procedure and one should always make such decisions in consultation with their physician.

On another note, it greatly concerns me that some people are considering the stem cell treatment in Germany as a possible treatment of KD. Stem cells have a great PR in the public view and they are viewed as the answer to our disease. However, there is no, not any, evidence that any current stem cell procedure has any benefit whatsoever on KD (or any other disease). The clinic in Germany is, in my opinion, stealing money from patents. I have examined the claims on their website and I feel that they have never demonstrated that their techniques are effective. In this case, the costs (in money) are high - over $11,000 per treatment (with the possible need for several treatments) plus costs for going there. In addition, at least one patient has died due to the treatment (http://www.telegraph.co.uk/news/worldnews/europe/germany/8082935/Baby-death-scandal-at-stem-cell-clinic-which-treats-hundreds-of-British-patients-a-year.html). The possible benefits are negligible - there is no objective evidence that any improvement has occurred due to their treatment. If one were independently wealthy, getting this treatment might be like getting the green shirt in the first example - not much harm (hopefully). But for me (and I assume most of us), paying that much money would severely impact me and my family - all for no benefit. The clinic in Germany was originally in the Netherlands - but they could not do their stem cell treatments there so they moved to Germany. There is now some indication that Germany may also ban them (see http://www.telegraph.co.uk/hea...tem-cell-clinic.html for more info on this clinic). Sixty minutes did a report last year on a similar clinic - see http://www.cbsnews.com/stories...es/main6402854.shtml.

If one is considering getting this stem cell treatment, I hope that one would not do so without the full consultation and approval of their physician.

BTW, if the links to the articles do not work on this forum, let me know I can email them to you.

the First clinic trial of embryonic stem cell therapy underway in the US on Oct24, 2010
A patient with severe spinal injuries is the first to undergo the treatment.

Initiating the clinical trial is a milestone for the field of human embryonic stem cell-based therapies,it hopes to see the first major breakthrough for human embryonic stem cell research
it look forward to participating in clinical trials that may help people with spinal cord injury
http://www.christiantoday.com/....in.the.us/26880.htm

we should strongly to support this clinic trail,
and that is the hope for KD than other drug

I call them today, they say the trial is very good at new damage spinl cord people.

my body like a car, if parts is damaged and aged, change it better than repair, nerve damage by toxic protein, reproduce it than repair it

stem cell treatment clinic trail for ALS in USA, This phase 1 trial, injecting neural stem cells into the spinal cords of people with ALS, conducted at Emory University in Atlanta in USA

The cells are derived from the spinal cord of a human fetus.

As of Oct. 18, 2010, six participants had received injections of stem cells into their spinal cords. All six had lost the ability to walk prior to entering the study. The first three people each received five injections into one side of the lumbar (lower back region) of the spinal cord, and the next three each received 10 injections into both sides of the lumbar cord. The trial's safety board did not see any warning flags with this stage of the trial.

The next stage will involve injecting six more people with ALS who are at an earlier stage of the disease than the first group and who still will be walking at study entry. The first three in this group each will receive five injections into one side of the lumbar cord, and the next three will receive injections into both sides of the lumbar cord.

A final stage is planned, in which six additional trial participants will receive injections into the cervical (neck) region of the spinal cord.

ALS Stem Cell Trial is Moving Forward

http://alsn.mda.org/news/als-s...trial-moving-forward

we should learn from the guy who have the ALS
after stem cell surgry the guy doing well.
compare with ALS, KD means nothing

http://alsrunforlife5k.com/

this guy is a hero, he try the theing which other people dare not to try
http://www.myfoxatlanta.com/dp...ll-transplant-102810

Leon, thanks for sharing this information. It will be interesting to see whether this helps.