ohno
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« Reply #206 on: May 12, 2010, 07:02:57 PM » |
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Tim -This is the email UK mentioned. As UK said isn't it possible that the first trial went well and now he has gone to the pilot trial as a matter of course? (I'm not real familiar with study types double blind randomised vs. pilot). Your thoughts? "Thanks for your email. I can assure you that this treatment really cure Peyronie's disease, but it is a long process (at least 2 or more years) of daily treatment. But infortunately infrared lamp alone does not work as well as the combined therapy. I have made some amendments to the protocol existing in the internet. In fact I have increased the goal to be reached in testosterone level to the highest normal level in order to have best results and the same with vit D levels. I think that I you really wish to carry out this treatment you can send to me your lab exams, some photographs of your penis during erection ( from a lateral view and from above to measure the curvature in both perspectives) and also an echography of your penis to measure the size of plaques. You may also have to not fulfil the exclusion criteria already stated and you will have to consult an urologist to examine your prostate (rectal exam and prostate echography) . You can also write to Prof. Abraham Morgentaler from Harvard University ( amorgent@yahoo.com) asking him if he will accept to participate in my trial because you are not the only suffer of Peyronie's disease from USA who sent to me emails seeking help. I hope I could help you more Sincerely Carlos C. Cusmanich, MD" Best to all, Rockwall
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UK
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« Reply #205 on: May 11, 2010, 08:18:33 PM » |
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His modifications from a double blinded randomized study to a "pilot" study suggest that he was either unable to get enough patients or the first protocol was not working - I suspect the latter as he made modifications to his protocol.
I disagree that the first protocol was not working based on the fact a forum member got an e-mail from the doctor stating the first protocol takes 2 or more years. I suspect the second protocol with the laser is an attempt to speed up the process based on his initial findings.
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ohno
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« Reply #204 on: May 11, 2010, 06:50:56 PM » |
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Hey Tim, I don't know hardly anything about vitamin d and peyronie's. Do you think it can be helpful and if so what type of vitamin d, at what dosage and for how long? Thanks
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Tim468
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« Reply #203 on: May 11, 2010, 09:24:38 AM » |
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Interesting study.
His modifications from a double blinded randomized study to a "pilot" study suggest that he was either unable to get enough patients or the first protocol was not working - I suspect the latter as he made modifications to his protocol.
He changed the following, (suggesting the former is unhelpful):
1) 30 patients will be treated with hyperthermia alone (30 minutes/day with infrared lamp of 150 W at a distance of approximately 20 cm of the plaque(s) and curvature) was changed to: 10 patients will be treated with hyperthermia alone during 30 minutes/day with infrared laser applied directly over the plaque and curvature for 16 weeks.
2) 30 patients will be treated with hyperthermia (as above) plus Vitamin D (4000 IU/day/oral) and one injection of Testosterone depot (Durateston®) every 2 weeks initially (patients with baseline levels of free testosterone under median normal level) was changed to: 10 patients will be treated with hyperthermia (as above) plus Vitamin D 30.000 UI/day/oral and an injection of testosterone depot (Durateston®) every 10 days initially.
So, it looks like a lower dose of vitamin D didn't cut it (no surprise there); that he found a better way to give hyperthermia; and that he found two weeks too long to wait between testosterone injections.
Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.
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ohno
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« Reply #202 on: May 10, 2010, 08:40:45 AM » |
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Hey UK, your mailbox is full...
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GS
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« Reply #201 on: February 26, 2010, 11:46:48 AM » |
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According to the way I am reading the Brazilian doctor's data, you do 30 minutes with the heat lamp combined with Vitamin D and testosterone injections. I'm already taking vitamin D and getting testosterone injections, so I think I will add the heat lamp. I also started the VED therapy 5 weeks ago and thanks to Old Man, is seems to be going well now.
Does anyone see a problem with combining these protocols?
GS
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Iceman
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« Reply #200 on: February 26, 2010, 03:21:38 AM » |
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so what in fact is he actually doing other than taking Vit d etc - is there a protocol that we can follow
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Skjaldborg
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« Reply #199 on: February 25, 2010, 11:11:28 PM » |
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Palpable means you can feel it.
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Iceman
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« Reply #198 on: February 25, 2010, 09:47:06 PM » |
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what does palpable. mean??
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Nemo
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« Reply #197 on: February 25, 2010, 07:14:49 PM » |
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UK, what does this doctor's study consider "upper normal levels" of testosterone?
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Fred22
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« Reply #196 on: February 25, 2010, 03:00:48 PM » |
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Please keep us posted on your progress! Fred
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UK
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« Reply #195 on: February 25, 2010, 01:26:05 PM » |
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Today the Brazil doctor updated the protocol to include new information. http://www.controlled-trials.com/ISRCTN82950322/He did send me an e-mail a few weeks back stating the same, but we now have new info on Vitamin D dose and the heat source. I have been following the Brazil protocol for 6 weeks as has another forum member for a bit longer. My vitamin D levels were checked and very low. 18ngol/L. I started supplementation at 20000UI per day. My Testosterone levels were checked at 695.11 ng/dl - normal so no intervention there. 150W lamp at approx 20-30cm each day for 30 minutes. After treatment my flaccid penis is engorged and healthy looking, straight and scar is not palpable. Doctor quotes 2 years treatment which makes sense as Peyronies took that long to develop. It is back to normal after a few hours but there has been a "change", but can't say if its positive or negative at this point. It seems as if the infrared laser for 16 weeks combined with T & D shows quicker improvement in which case this study should complete shortly. I really think this guy is onto something.
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Tim468
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« Reply #194 on: December 22, 2009, 08:38:50 PM » |
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UK
I have chased down promising leads for years, to no avail.
This makes sense to many of us as a probable "fix" for SOME men, but probably not all men. But we have also ween things that make sense, and which had promising preliminary results, never pan out (ie ALC, Verapamil, etc)
Being a real doc, and seeming to care about outcomes does not make it more likely that a therapy will work, although I agree that it lessens the likelihood of a swindler simply lying to us (I have long suspected that Xiaflex is being oversold for profits, and will not pan out at all).
Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.
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skunkworks
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« Reply #193 on: December 22, 2009, 06:54:51 PM » |
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HELLO ANYBODY OUT THERE???
does anyone really not have any comment to make, or has Peyronie's blinded you so much that when something worth discussing comes up you ignore it?
I'm hoping this study is going to get published somtime soon, considering I would go to prison for 2 years to be back to normal, this really isn't a long time for a treatment that could work.
Calm down sunshine, we tend to wait till results are published and we have actually read them before we start setting off fireworks. Please note that as of 06/02/2008 the anticipated end date of this trial was extended to 26/03/2010. The previous anticipated end date was 26/09/2008. Still a little while longer to wait.
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UK
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« Reply #192 on: December 22, 2009, 02:13:39 PM » |
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This is my first post on this forum although I have been lurking for years even back to the old BTC forum. Some have already noted this Brazilian study that is currently underway. I contacted the doctor conducting this study to determine if this infrared treatment was efficatious in his oppinion. His Reply "Thanks for your email. I can assure you that this treatment really cure Peyronie's disease, but it is a long process (at least 2 or more years) of daily treatment. But infortunately infrared lamp alone does not work as well as the combined therapy. I have made some amendments to the protocol existing in the internet. In fact I have increased the goal to be reached in testosterone level to the highest normal level in order to have best results and the same with vit D levels. I think that I you really wish to carry out this treatment you can send to me your lab exams, some photographs of your penis during erection ( from a lateral view and from above to measure the curvature in both perspectives) and also an echography of your penis to measure the size of plaques. You may also have to not fulfil the exclusion criteria already stated and you will have to consult an urologist to examine your prostate (rectal exam and prostate echography) . You can also write to Prof. Abraham Morgentaler from Harvard University ( amorgent@yahoo.com) asking him if he will accept to participate in my trial because you are not the only suffer of Peyronie's disease from USA who sent to me emails seeking help. I hope I could help you more Sincerely Carlos C. Cusmanich, MD" Best to all, Rockwall I'm really surprised that this post has not attracted more debate. It looks a legitimate trial http://www.controlled-trials.com/ISRCTN82950322/ isn't this what we are all looking for  I've mailed the Doctor a few days back enquiring when the results of the study will be out but not heard anything so far. HELLO ANYBODY OUT THERE??? Either these posts are being missed on the forum, or members are choosing to ignore the importance of what has been posted here. In my opinion this could be the biggest breakthrough we have had to date - more important than Pentox, Xiaflex, VED/Traction, Surgery. The doctor says "cure" Why I find this believable is the doctor is 1) a real doctor 2) it is a real trial 3) it is using a realistic treatment in hyperthermia, vitamin d and testosterone 4) there is no financial gain in these inexpensive treatments 5) it is not a quick fix, stating 2 years says to me there is sincerity in the statement 6) a US urologist has teamed up with this doctor and he seems legitimate does anyone really not have any comment to make, or has Peyronie's blinded you so much that when something worth discussing comes up you ignore it? I'm hoping this study is going to get published somtime soon, considering I would go to prison for 2 years to be back to normal, this really isn't a long time for a treatment that could work.
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despise
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« Reply #191 on: December 21, 2009, 10:02:19 PM » |
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i dont think it matters how hot it gets for you penis but what i have noticed is that its bad for your heart! =O when i get out its pumping very fast, and i am in pretty good shape. so does anyone know if im correct? should i just make it hot enough to wear it doesn't make my heart pump? dumb question i know but i think the hotness really helps my peyronies so its a complete bummer =/
Have you read the oft posted hyperthermia study on here? Have you read about tissue necrosis? Do you know what temperature at what time duration is dangerous? As you made the comment above, I must assume not. Might be an idea to find out. Yes I have read the study and I was trying my hardest to ovoid using to hot of a temperature but I guess I got lazy and thought it was a quick help to peyronies. I didn't believe in the study to much because I noticed improvement after using the high temperatures it tells you not to use and I also consulted with my urologist who said your skin would be burned first if it was a hazard to your penis. I guess im counseling out the baths as a treatment from now on because I don't see how a 105 bath would help at all but I'm going to try it anyways.
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skunkworks
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« Reply #190 on: December 21, 2009, 09:46:13 PM » |
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i dont think it matters how hot it gets for you penis but what i have noticed is that its bad for your heart! =O when i get out its pumping very fast, and i am in pretty good shape. so does anyone know if im correct? should i just make it hot enough to wear it doesn't make my heart pump? dumb question i know but i think the hotness really helps my peyronies so its a complete bummer =/
Have you read the oft posted hyperthermia study on here? Have you read about tissue necrosis? Do you know what temperature at what time duration is dangerous? As you made the comment above, I must assume not. Might be an idea to find out.
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Old Man
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« Reply #189 on: December 21, 2009, 06:16:59 PM » |
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despise:
I work out at the local Y and there is a hot tub available to the members. There is a caution note from the Y that says one should not use a hot tub where the temperature is above 105 degrees. Anything above that temperature could possibly cause heart problems and could cause skin problems, etc.
Above just my take from experience at the YMCA.
Old Man
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56 Plus years with Peyronies Disease and still counting
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despise
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« Reply #188 on: December 21, 2009, 09:34:53 AM » |
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i dont think it matters how hot it gets for you penis but what i have noticed is that its bad for your heart! =O when i get out its pumping very fast, and i am in pretty good shape. so does anyone know if im correct? should i just make it hot enough to wear it doesn't make my heart pump? dumb question i know but i think the hotness really helps my peyronies so its a complete bummer =/
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scotty_r
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« Reply #187 on: December 08, 2009, 04:02:48 PM » |
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Hi guys, im new here so a big hello to all my fellow peyronie peeps...
right, ive been doin abit of scannin through this site for roughly a month or so.
My story - i basically noticed a small lump within my penis shaft following an intense night with a luthawanian chick.. and after doin abit of research and noticing my penis was infact beginning to bend upwards substantially, i knew i had to do something.
initially i went to visit a GUM dr who examined my penis and said i had nothing to worry about and that it was lymphocelle? he said after a few weeks it will eventually subside. it never did and i felt as if the curvature was increasing..
i was intriuged by the claims that infra red could help and being a cheap option, i thought i would give it ago.
i purchased a heat lamp (150w) and i apply this to the area of nodule atleast once a day for 30 mins, no more than twice.
I have been doing this now for roughly 2 weeks and so far i can confirm that the nodule has most certainly decreased. i am starting to feel that i have got to that point were it is not reducing any further however it still is early days i guess...
as for curvature, very hard to say. basically, there has been no dramatic decrease in curvature as of yet.
i take no other supplements to aid my condition at present however i am thinkin about paying another visit to the GUM doc or asking for a referal to a urologist to discuss additional methods of treament.
from what i can gather pentox is must.
I'm considering increasing to wattage from 150 to 250 to see if this achieves greater results.
Hope this post helps out somewhat..
will keep u posted
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ohno
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« Reply #186 on: December 05, 2009, 01:45:47 PM » |
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I agree 100% that this is encouraging (2 years is a long time but ...) As I've stated before I have been using a thermotex heating pad for several months now in conjunction with traction (4 hours a day), pentox and a variety of supplements (including arginine, l carnitine, pycogenol). my results have been positive (less wobble - if you will - with my hourglass/hinging). I'm continuing on this course but am anxiously watching for Brazil final report. Please post the Doctor's response when and if you get it. Thanks
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UK
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« Reply #185 on: December 05, 2009, 11:09:45 AM » |
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This is my first post on this forum although I have been lurking for years even back to the old BTC forum. Some have already noted this Brazilian study that is currently underway. I contacted the doctor conducting this study to determine if this infrared treatment was efficatious in his oppinion. His Reply "Thanks for your email. I can assure you that this treatment really cure Peyronie's disease, but it is a long process (at least 2 or more years) of daily treatment. But infortunately infrared lamp alone does not work as well as the combined therapy. I have made some amendments to the protocol existing in the internet. In fact I have increased the goal to be reached in testosterone level to the highest normal level in order to have best results and the same with vit D levels. I think that I you really wish to carry out this treatment you can send to me your lab exams, some photographs of your penis during erection ( from a lateral view and from above to measure the curvature in both perspectives) and also an echography of your penis to measure the size of plaques. You may also have to not fulfil the exclusion criteria already stated and you will have to consult an urologist to examine your prostate (rectal exam and prostate echography) . You can also write to Prof. Abraham Morgentaler from Harvard University ( amorgent@yahoo.com) asking him if he will accept to participate in my trial because you are not the only suffer of Peyronie's disease from USA who sent to me emails seeking help. I hope I could help you more Sincerely Carlos C. Cusmanich, MD" Best to all, Rockwall I'm really surprised that this post has not attracted more debate. It looks a legitimate trial http://www.controlled-trials.com/ISRCTN82950322/ isn't this what we are all looking for  I've mailed the Doctor a few days back enquiring when the results of the study will be out but not heard anything so far.
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slowandsteady
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« Reply #184 on: November 10, 2009, 08:55:43 PM » |
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Does temperature hot enough to cause damage really hurt, or do you really have to measure to be safe?
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skunkworks
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« Reply #183 on: November 09, 2009, 09:37:57 PM » |
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I think it would be idiotic to risk further harm to an already damaged part of your body. Despise in particular, you need to take more care. If your baths are over 110 you are risking permanent cell damage. This study used temperature between 102 - 104 degrees F. The researchers conclude temperatures of 107.6 degrees F are safe for limited periods but stress that temperatures of just 113 degrees F can result in irreversible cell damage. http://www.peyroniesforum.net/index.php/topic,915.msg13542.html#msg13542
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Nemo
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« Reply #182 on: November 09, 2009, 09:29:35 PM » |
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I would not be worried about your bath. I too tried hyperthermia a couple years ago and then freaked out because I read those studies warning about not going above 105 degrees. I tested the rice sock I was using and it was hotter than that, so I freaked out thinking my weiner was going to fall off or something.
Truth be told, I don't believe a hot bath is going to do you any harm - and if it were so hot as to do you harm, it would hurt like hell and you'd never get into it or jump out of it immediately. A burn is a burn, and if your skin is not showing signs of a burn, I don't think you have anything to worry about.
Nemo
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despise
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« Reply #181 on: November 09, 2009, 08:32:40 PM » |
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kk read it all. I found my themometer and the heat of the baths I have been taking are over 110 ferehnheit. The themometer wouldn't show me how much because it would just stop after 110. I haven't felt any pain or anything but now I'm worried ive already caused cell damage.
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skunkworks
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« Reply #180 on: November 07, 2009, 11:28:56 PM » |
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I think you should all read the hyperthermia studies very closely. Tissue necrosis sets in quite quickly at certain temps.
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despise
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« Reply #179 on: November 07, 2009, 10:45:19 PM » |
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I really am confident that Hyperthermia treatment works, only because i have seen what it does. I need to find out how many degrees my hot bath is coming out to because i don't want to cause any tissue damage. Are there baths that can get so hot that its dangerous? I live in a hotel so im hoping that wouldn't be that case.
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pichou
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« Reply #178 on: November 06, 2009, 05:58:25 PM » |
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The best Vitamin D To Take is Vitamin D3
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ohno
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« Reply #177 on: November 06, 2009, 05:20:54 PM » |
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Good work!! Does anyone know the best kind of vitamin D to take?
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rockwall
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« Reply #176 on: November 06, 2009, 04:08:18 PM » |
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This is my first post on this forum although I have been lurking for years even back to the old BTC forum. Some have already noted this Brazilian study that is currently underway. I contacted the doctor conducting this study to determine if this infrared treatment was efficatious in his oppinion. His Reply "Thanks for your email. I can assure you that this treatment really cure Peyronie's disease, but it is a long process (at least 2 or more years) of daily treatment. But infortunately infrared lamp alone does not work as well as the combined therapy. I have made some amendments to the protocol existing in the internet. In fact I have increased the goal to be reached in testosterone level to the highest normal level in order to have best results and the same with vit D levels. I think that I you really wish to carry out this treatment you can send to me your lab exams, some photographs of your penis during erection ( from a lateral view and from above to measure the curvature in both perspectives) and also an echography of your penis to measure the size of plaques. You may also have to not fulfil the exclusion criteria already stated and you will have to consult an urologist to examine your prostate (rectal exam and prostate echography) . You can also write to Prof. Abraham Morgentaler from Harvard University ( amorgent@yahoo.com) asking him if he will accept to participate in my trial because you are not the only suffer of Peyronie's disease from USA who sent to me emails seeking help. I hope I could help you more Sincerely Carlos C. Cusmanich, MD" Best to all, Rockwall
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TheSolution
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« Reply #175 on: September 29, 2009, 01:52:45 AM » |
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I did my own hyperthermia in bath. 107 for 25 minutes. This was a mistake, but it helped. But please lower temperature. My balls turned black and I suffered some slight burns. The 107 temp was too high. 104 is highest that spas can go and is much safer. Its time and temp. So don't kill the cells in your penis.
But the results were good. My tunica has had a major dent or wrinkle that was causing 25 curve to the right. I have no hard plaque on outside to the touch, but ultrasound shows distributed bands inside. Was a recent injury from a wild girl on top (note - never allow any girl on top, nice and gentle is not in some girls vocabulary). This was devastating to me and extremely painful. But after 2 times in spa, I made myself get hard watching porn right after and noticed my curve was 10 degrees and the tunica wrinkle gone. 5 hrs later, the tunica was much better than ever before and that wrinkle has not come back. Curve is now stable for 2 weeks at 10-15 degrees. Some morning are a problem and so I get in 100-103 degree bath and warm it up before I make an erection occur. This is helping stretch it out. I never force the stretch though, that's a mistake. Just let the erection make it happen. The heat is really helping.
I am going to try some heat before bed. Will put heat pad over shorts (never direct or burns can occur).
I think this works for tunica problems. My scarring of the tunica was causing some of my bend and a ton of pain. Pain is way down. Almost livable again. I am going in spa at 100 deg now 4-5 times daily for 15 minutes to keep it flexible. 104 is too hot for multiple times. The health club is 103 and right next to my house.
Please don't do 107 deg. Its dangerous. Could have lost my unit. It was embarrassing going to urgent care with completely black balls. The problem with 107 is that it was probably 109 as my temp probe is + or - 2 deg. 110 causes 3rd degree burns after 5 minutes. I also had trouble with the erection after 107 and struggled to help it. My penis was probably at 107 by that point and was overheating.
Hope this helps for some. I think its great for certain types of injuries and maybe not for others. Try and see if the erection is less bent. But don't force. I tried that a few weeks earlier and the pain after that was a 10 as I ripped it worse. let your unit fix the bend naturally.
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slowandsteady
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« Reply #174 on: September 08, 2009, 11:55:47 AM » |
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It would be interesting to look at how hyperthermia affects autoimmune disease. In rats, whole body hyperthermia lessens the impact of an induced autoimmune response PMID 18402844): CONCLUSIONS: Whole-body hyperthermia attenuates experimental myocarditis in the rat. The beneficial effect of whole-body hyperthermia may be related to immunomodulatory effect and direct cardiomyocyte protection. Sauna anyone? In a mouse study on autoimmune encephalomyelitis ( PMID 11299319): The stress response (SR) can block inflammatory gene expression by preventing activation of transcription factor nuclear factor-kappa B (NF-kappaB). ... The HSR attenuated leukocyte infiltration into CNS assessed by quantitation of perivascular infiltrates, and by reduced staining for CD4 and CD25 immunopositive T-cells. T-cell activation, assessed by the production of interferon gamma (IFNgamma) in response to MOG(35-55), was also decreased by the HSR. s&s
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skunkworks
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« Reply #173 on: August 15, 2009, 01:28:27 AM » |
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Went to try and find it and discovered it was already on this forum. http://www.peyroniesforum.net/index.php?topic=294.0Hyperthermia significantly reduced plaque size and penile curvature (Table I, Figure 1) and increased mean scores of EF domain (Table I, Figure 1), while verapamil did not cause any change in these parameters. Haemodynamic parameters were not significantly modified in either group (Table I, Figure 2). Hyperthermia caused significantly fewer side effects than verapamil infiltrations and was significantly more effective in preventing disease progression. There were no significant differences between the two groups in the reduction of pain during erection.
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Thin Man
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« Reply #172 on: August 14, 2009, 12:49:31 AM » |
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Hey Skunkworks,
Could you share the heat study with us?
Maybe that's something we'd actually like to know about.
TM
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newguy
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« Reply #171 on: May 04, 2009, 01:50:16 AM » |
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Jackieo - Thanks very much for your thoughts. I suppose there are still a great number of unknowns, but heat can no doubt be of some use, prior to VED use, and traction.
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Jackieo
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« Reply #170 on: May 03, 2009, 10:41:07 PM » |
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newguy: here is a novice's take on the hypothermia debate. I am very new to this entire scene. I most recently joined the VED club.
I experimented at first to become acquainted the the..."equipment" and I found that taking a hot "relaxing" shower prior to stretching afforded me a longer no-pain stretching period. I equate it to taking a steam prior to a massage....warm and relax (although the plaque is deep-seated I think the heat does permeate to some depth). Maybe I am wrong, but the application of heat (the hand-held shower directly on my penis) prior to stretching works for me....followed by a warm rinse after. This is what I call a very-small control group! Jackieo
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Jackieo
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newguy
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« Reply #169 on: May 03, 2009, 09:53:20 PM » |
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All - This hyperthermia technique sounds interesting. The trial listed in the pdf certainly put it in a positive light, though it was very smallscale. Hopefully ongoing studies will eventually give us a better idea of whether this can be useful to us.
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George999
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« Reply #168 on: May 03, 2009, 09:43:11 PM » |
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I believe there is a Brazilian trial going on now. - George
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royswales
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« Reply #167 on: May 03, 2009, 06:03:15 PM » |
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Hyperthermia
I have been trying to apply heat in the form of hot water which I have put into a plastic tube (I checked the temperature ensuring no more than 41 degrees) for 20 minutes. It has only been for a few says now - no difference yet. I thought that the Italian trial sounded promising and would have hoped that another scientific trial could have been started to corroborate the results of the first.
I was just hoping to hear from any one else on the site who had tried any form of hyperthermia.
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Hawk
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« Reply #166 on: April 30, 2009, 01:54:28 PM » |
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Hi
has any one any experience of hypertherapy treatment? I assume you mean hyperthermia. Go to search and type in the term. You will find a lot posted about it. In short, I know of no one that can document improvement directly associated to hyperthermia but many use it with caution along with VED or Traction or other treatments.
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royswales
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« Reply #165 on: April 26, 2009, 03:29:31 PM » |
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Hi
has any one any experience of hypertherapy treatment? The trials in Italy in 2006 seemed to give some hope but I would like to hear from any one who has tried it lately? Thanks
Royswales
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Old Man
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« Reply #164 on: February 26, 2009, 12:47:11 PM » |
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terryd:
What I am about relate will probably bring up comments that massaging scar tissue won't work. But, recently, I underwent surgery for Dupuytrens Contractures. I have undergone several weeks of occupational therapy wherein the therapist uses cocoa butter to thoroughly massage my hand. This is done after a 15 minute heat treatment in a machine that uses hot air and a corn product to warm the hand. The hand is bombarded with this product by the heated air being blown around inside the cabinet.
Today, the scar tissue that remains is barely visible and the incision line is virtually gone. The results so far are entirely satisfactory for me. I know that this has absolutely nothing to do with Peyronies Disease symptoms, but it demonstrates that massaging a scar on the external part of ones body can and will respond to physical massaging.
Don't think that Peyronies Disease would respond in the same way since there is no way to get ones penis into a machine such as is used on the hand, etc.
Old Man
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56 Plus years with Peyronies Disease and still counting
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Hawk
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« Reply #163 on: February 04, 2009, 11:55:34 PM » |
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Be carful not to use too high of a heat setting. The past studies have used low heat. There are also warnings that high heat can lead to tissue death.
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tommarkey
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« Reply #162 on: February 04, 2009, 08:40:25 PM » |
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I'am very happy with somethings that i read here lately. Many studies are ongoing. Traction, hyperthermia, the XIAFLEX that some users are participating, the hope about pentox. All these things indicate that in a close future an efective treatment will be avaible to us. I'm studying medicine at this university that is doing the hyperthermia's study. I don't know the doctor that is commanding the study, i think that he just work in the hospital, not teachs. I will try to contact him to know about this study, mainly the previous results, and then i post here again. It has almost 2 weeks that i'm doing an "alternative" hyperthermia treatment in my home, that i planned, with the little shower (i don't know the name in english!) that is connected in the shower and 50 C water. In the last days i start to feel pain in my nodule, twinges sporadically... (I did not feel pain since my peyronie stabilized, almost two years ago). I don't know if this is good or not... But i will continue at least more 3 weeks... Then i will do an ultrasonography to follow the evolution of my plaques (I do one to each 3 months). Thanks, and always apologies for my english. Tommarkey
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headinthesky
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« Reply #161 on: May 14, 2008, 11:05:03 AM » |
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We know that Trauma is a key factor in initiating Peyronies. That makes me more than a little suspicious of techniques that employ trauma in there delivery. Both needles used to administer things like Verapamil or Collagenase and ultrasound or other waveforms used to attack plaque are literally inflicting trauma in the process. This sounds to me like it could turn into some sort of chronic treatment scheme. Sorry to inject skepticism here, but I can't help but wondering if we are not barking up the wrong tree with these approaches. - George
Which is what I was getting at. Something like heat therapy could cause other damage and lead to necrosis.
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headinthesky
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« Reply #160 on: May 13, 2008, 05:16:09 PM » |
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I said that heat might break unwanted molecular bonds, but I don't think that was the idea behind the original study. What I recall is that it was based on the knowledge that temperatures around 43C will cause the death of cancer cells but leave normal healthy cells unharmed - and Peyronie's/Dupuytren's fibroblasts have some characteristics in common with cancer cells.
Remember that microwaves and infrared are in some sense the same thing - just 2 different frequency ranges of electromagnetic radiation. Microwaves are the high end of the radio spectrum - directly above them lies infrared - and just above that, the low end of the visible spectrum. Microwaves can be bent, focused and refracted much like visible light.
I don't know the science of why microwaves are used for hyperthermia instead of IR. I tried IR because it was possible to due so at low cost, with off-the-shelf components. Microwaves do penetrate more effectively than infrared - light won't penetrate the walls of your garage, but transmitter in your garage door opener does so easily. So for tissue far below the surface, microwaves are more effective. For tissue at or near the surface, I don't know why there would be a difference.
The frequencies are *much* different, microwave is a "heavier", and can affect cells, vs IR which does not. Cells all have a certain resonance frequency which can't be attained using IR, which using microwaves will. Think of a microwave oven - it targets the resonance frequency of water, the water vibrates at that resonance frequency which then causes the water molecules to jump and moves - which releases energy in the forms of heat. They're targeting the resonance frequency of plaque - which is mostly made of calcium, and other sterols such as the high and low density forms of cholesterol - mostly LD. Finding the "optimum" resonance frequency of the plaque is the problem, and can be very damaging to other cells in trying to find out, since it's not a uniform composition. It's almost the same conditions which allow atherosclerosis. Don't use IR or microwave, or any type of sub-visual or over visual wavelengths on yourself, you don't know what exactly that resonance is targeting - could even be DNA ( which is what radiation is/does).
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Tim468
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« Reply #159 on: March 16, 2008, 10:02:04 AM » |
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I think I have caught up with the on-going debate between Hawk and George regarding hyperthermia and mangosteen, glycation and p53, and apoptosis and blood flow, on oxygen delivery and the effects of stretch on TGF-Beta 3 expression (oops, they missed that last one). Several thoughts... Doing science in the lab has taught me a lot of humility, especially when I come face to face with truly great minds in science who are able to look at what I have done and see more than I did, because of their holistic viewpoints of science and physiology. I have learned that it is ALWAYS more complicated than we think. Yet, doing science requires a reductionist approach. When someone studies the effects of, say, PGE2 on muscle function - how do you go after that? What you do is typically done in several ways. First, you use an agonist to replicate the presumed effect. For example, you might take some muscle and incubate it with PGE2, and then with a PGE2 analog. Second, you use a PGE2 blocker to see if you can prevent the effect. Third, you have to look at what a similar molecule does. Only in this way do we start to see what adding or removing/blocking of a molecule leads to. But assumptions always get in the way. A friend once "proved" that a certain type of bacteria "caused" high blood pressure in the lungs, but he then found that when he infused polystyrene beads of the same size into the pigs, he got the same response. That was how we came to see that pigs have white cells resident in the lungs that respond to ANYTHING, not just bacteria. Again and again (in fact, I dare say EVERY time) I have found that it is like peeling an onion - every new discovery leads to yet another discovery. Ultimately, I think that we spend too much time and energy trying to find the "answer" when in fact there are many answers and truths to be learned. George is probably right about the role of glycation, but I doubt it underlies all Peyronie's Disease, because it can't. There is never a single answer to any of this. Similarly, I think Hawk is overly simplistic to suggest that heat is heat - it can't be. By definition (because her are human) we cannot know all of what happens to people under biological stress. I could see heat loosening sulfhydryl bonds in collagen and allowing natural degradation to occur more easily (and improvement of Peyronie's). I could also imagine heat-induced aggregation of macromolecules leading to sludging in small capillaries, and thus leading to local hypoxic damage to tissue (and worsening of Peyronie's). And in physiology, if you can imagine it, then it can happen, probably. Hawk, I think that what George offers us is his desire and ability to integrate data from other fields that help improve the anti-oxidant and anti-glycation status of our health in a way that will probably be beneficial to our health, and probably not hurtful. There are no data to support the notion that any of it will "cure" Peyronie's Disease. And to the extent that it "makes sense" to some of us (perhaps most of all to George!)  then I guess it stands to risk misinforming those incapable of discriminant thinking here. I believe that this is true of the VED though, also. The main difference is that with the VED we have testimonials, which carry their own risks (ie, they can be wrong, and are without controls to compare against). The problem with inductive reasoning like George's is that... it can be wrong. But overall, I think that we are on to something here. We can try un-hurtful things and see if they help - and create more testimonials. I think that George's holistic biological approach is useful, in that it helps me think about alternative mechanisms. Certainly, the link between diabetes and Peyronie's is not only due to reduced blood flow. Or, it could be that simple... But wait! Nothing is ever simple. The trouble then is sorting out the meaning of the variety of ideas and data presented here. Our very human tendency to not completely do anything as well as we should will also really complicate things (I have never been able to take anything EVERY day of the week). Was the iontophoresis not as good for me as the published data because I didn't follow their protocol? Is my tendency to cheat on sweets now and then why George's diet is not yielding the same results (oh, BTW, he and I both still have Peyronie's)? I don't know. All we can be is uncertain. Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.
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George999
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« Reply #158 on: March 15, 2008, 11:17:52 AM » |
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Thanks Hawk, That is certainly a very good reference and exactly what I was looking for. I really do think it is important to get all these factors documented on the forum. I *did* do a search of the forum yesterday and was unable to turn anything up. So this is an important step. I think the next question, which probably actually belongs under the "Causes" thread, is just how all these things tie together. Is the p53 protein, cell immortality phenomenon a genuine causal factor or just a link in the chain?
1) We know that lack of oxygen can cause an over expression of TGF-beta-1, in which case normalizing circulation and oxygen levels would fully address the problem.
2) We also know that faulty glucose metabolism can cause glycation which can also cause over expression of TGF-beta-1, in which case only addressing glucose metabolism AND resulting glycation would fully address the problem.
3) And of course, one could conceive a combination of these two pathways exacerbating the TGF-beta-1 problem.
3) But where does the p53 protein fit into this equation. Upstream or downstream? Actually it causes me to wonder if what is going on with the p53 protiein is being induced by the TGF-beta-1, which could explain why both hyperthermia and antiglycants like Pentox and ALC have shown effectiveness against Peyronies. That would certainly be interesting to look into. We do know that there are things which normally modulate the activity of p53. In fact chemotherapy in the oncology world typically attacks p53. And there is a new drug coming out now that can precisely modulate p53 WITHOUT damaging normal tissue.
4) When I look at the research in this area, I see that, indeed, TGF-beta-1 DOES modulate p53! But the really strange thing is that increases in TGF-beta-1 affect p53 in a way that cause it to ACCELERATE apoptosis, which is just the reverse of what is actually happening. This is exactly the scenario one finds with cancer. High level of TGF-beta-1 which SHOULD be causing mass apoptosis, but instead a complete absence of normal apoptosis. What is going on here! Could it be that if levels of TGF-beta-1 get too high, they lose their ability to exert control over p53? Could it be that p53 could develop TGF-beta resistance in a similar way to cells developing insulin resistance? In that case, the solution would be to restore normal levels of TGF-beta-1. And this could be an explanation of why hyperthermia has been shown to work against fibrosis. Hyperthermia -> Increased circulation -> Increased oxygen -> Lowered levels of TGF-beta-1 -> Restoral of p53 modulation -> Normalized apoptosis of fibroblasts.
All these bits of research are really just pieces of the bigger picture and if they can be successfully stitched together the whole reveals much more than the pieces. - George
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George999
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« Reply #157 on: March 14, 2008, 07:44:04 PM » |
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Hawk, Thanks for the references, they explain a lot. At this point I am ready to concede that hyperthermia can be effective and that increased circulation may play a role in that. I still have major doubts about the apoptosis (or rather lack of) factor though. I would really like to see a reference to lack of appropriate cellular apoptosis in relation to Peyronies. That would be interesting. I am also wondering why hyperthermia has not been broken out into a separate topic since there is apparently significant interest in it. - George
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