but do you guys think pudendal nueropathy is the cause or rather a consequence of our condition?
I’m not sure, I would say the source, but according to Awor the whole AR gene silencing is the source. I don’t know what to think. My gut feeling says something is wrong with our nerves.
Hey Tlecum or Voice, could you please tell us the name of that exam that was done? Or Can someone from France tell us the name of the exam that was done in France?
This pudendal neuropathy doesn’t explain muscle wastage, brain fog, gyno or weight gain. Most of which are currently more important to me than sexual sides. We’re suffering androgen deprivation to varying degrees it’s not rocket science. Do some reading about Lupron and how similar the side effects suffered are.
I’ve spent plenty of time researching gene therapy for ED etc but even if it was available tomorrow it wouldn’t give you libido, normal orgasms etc. We have to treat the main problem.
Not everyone has the same symptoms.
I have impotence, lack of libido and fatigue.
I also have what appears to be a prevalence of infections (former prostatitis) and skin issues. Changing hormones can affect many areas in many different ways, hence the tremendous individual variability from PFSer to PFSer.
I think it’s a mistake to look only for one single switch that got turned off.
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Or mabye disregulation of expression of numerous AR responsive genes along with an over-expression of the AR, as has been documented in prostate cancer cells due to androgen ablation therapy, rather than a change in “hormones”?
There is a Dr. Richard Burt at Northwestern in Chicago who has supposedly successfully treated people with MS and other diseases using stem cells. Is there anyone in Chicago who would be willing to approach him with our problem?
If our problem is in fact something with androgen signaling, maybe there is a doctor who can help influence our cells back into a normal gene expression. Maybe injected healthy stem cells can signal to the cells in our penis (or prostate, or whatever) to continue normal gene expression.
Its probably important to note that there are a lot of conmen out there who are claiming wild success with stem cells for people suffering MS, ALS, and other serious diseases. I am mentioning Dr. Richard Burt because he is affiliated with a very respectable university and medical institution and thus he must be legitimate (at least I hope).
Here is a video of him for anyone interested: youtube.com/watch?v=WjDS2Yq5Ksc
Here is a study conducted in Israel that shows that stem cells (or a compound in stem cells?) restores normal gene expression in Fragile X syndrome.
" The substance 5-azaC has been known for many years to clear methyl groups from regulatory elements of genes, and is also an already established drug for other diseases. However, this is the first time that it has been shown to successfully clear the methylation in neurons or stem cells of Fragile X patients.
In addition, the researchers were able to show that gene expression is maintained even after 5-azaC withdrawal, so there is no need to administer it continuously. This raises hopes for the use of the compound as a potential drug for the benefit of Fragile X patients."
5-azaC/Azacitidine or Vidaza has been approved by the FDA for myelodysplastic syndrome.
Very interesting. According to the story they have yet to do this in vivio. Here is a link to the story in science daily if anyone is interested. – sciencedaily.com/releases/2012/05/120522084524.htm
There is also Trichostatin A, which I mentioned in a new thread I created.
“Trichostatin A (TSA) is an organic compound that serves as an antifungal antibiotic and selectively inhibits the class I and II mammalian histone deacetylase (HDAC) families of enzymes, but not class III HDACs (i.e., Sirtuins)[1].”
Reminds me of Ihatepropecia702 who recovered on antifungals.
Good on you Joetz. I have always had the belief that stem cell therapy could be very positive in helping us out.
It’s great to hear that someone is finally pursuing this avenue.
Please keep us up to date with everything mate!
Yes thanks Joe for going and hopefully you’ll let us know how things go. And hopefully you’ll find a reliable/legitimate place to have it done. I just want to warn that there are a lot of clinics not doing the procedure effectively.
Only thing is with the study conducted in Isreal they were using neural cells in vitro. They say there is a “substantial gap” in knowledge right now from being able to do this in a controlled environment in the lab to being able to peform this on live patients. Not trying to sound negative and I agree this is very interesting stuff.
I was wondering if anyone else wanted to start contacting stem cell clinics in his country of origin to see if they are interested in helping us with our problem. I am going to contact the Stem Cell Institute in Panama (not my country I know) to see if they think they can be helpful. Anyone else interested in pursing this angle?
If we have tissue damage of any sort it should help. If we have altered gene expression, it may help. I was wondering whether injected stem cells in our pelvic region would possibly start to replace the defective cells with correct gene expression. Or the stem cells may influence the defective cells to correct their gene expression. Stem cells are involved in a lot of cell to cell signaling. I came across (and when I find it again I’ll post it) where stem cells were able to trigger correct gene expression.
Stem cells will also help if there is any autoimmune dysfunction going on as well.
Of course it’d be great to get that data from Awor’s research so we could show it to the doctors.
Stem Cell Institute Panama
I’d be very careful as to not pursue a clinic that is for profit and outside of the USA. Many are fraudulent or outright dangerous. Those places would tell you, “Sure, come on down and bring $10K-20K.” You’d need an established research university here in the states or abroad, long as they’re legit. I think right now that would be a very very tough sell. Of course any of us could just go to a clinic here in the states and try injection into penile tissue and/or the abdominal stem cell IV.
It’s interesting that in newts, who can regrow an entire arm with bone, tissue, etc. there is a certain protein that is expressed in their stem cells that seems to address them to develop into certain types of tissues at certain locations. Obviously we don’t regrow arms so maybe that gene or signal has been lost or we never had it in the first place. Also, they have a vastly higher amount of stem cells than humans. So, I don’t think it is as simple as just injecting a ton of stem cells and there is alot to learn.
Another interesting angle on this is that they are now taking adults stem cells of people with certain conditions and implanting their genetic information into groups of embryonic stem cells (after removing the genetic material from those) and watching how the cells develop. This tells them exactly where something has gone wrong in a way never before possible. Not sure if that is a something that would ever apply to our condition or not, but it’s interesting.
Obviously we need to be careful about who we approach. However the problem with going to a medical institution here in the US is that our problem is not life threatening, its a quality of life issue. I doubt if doctors will try experimental treatments on us just so we can get our sex lives and mental clarity back. I wish Awor would talk to the research scientists he is working with to see if stem cell therapy may be able to help us.
No, what I meant is approach the stem cell treatment centers in the US. There are plenty of private for profit ones set up here in the states without having to go to India, China or Panama. As I said, getting a research university to look into this would be tough as you indicate they are looking into stem cell treatments for other conitions that effect a greater number of people.
I’m having it done in the USA. So far things have been slow, waiting for bloodwork to establish a baseline and also to look for other underlying problems. I’ll know more by Wednesday.
Once I get the green light I’m going to move quickly. First procedure will be the liposuction of belly fat. Then I need to wait a week for my belly to heal. This is important because we don’t want the stem cells rushing to the belly to fix the damage and not fixing the rest of my body.
After the IV of stem cells is done it will be a few weeks (from patients I know and am communicating with) for things to really kick in. A friend of mine who did it said the really euphoric rush of improved health really came on strong following 8 weeks after the IV
why are you getting lipo? does this belly fat have to do with PFS?
Have you read the thread? Stem cells are taken from abdominal fat, lower abdominal I’d guess. I read today that lower abdominal fat tissue has 5 times the amount of stem cells than does upper abdominal fat tissue. I’ve heard lipo is pretty painful. Hopefully they put you out and give you some pain meds after.
Ok guys
My appointment for the stem cell therapy procedure is next week
I’ll be updating this thread the day of the procedure to let you all know how it goes and will be updating this thread to document my progress.