Has anyone heard of Dr Donald Rhodes in Texas using electrode-acupuncture therapy for treating DMD? He has a video on You Tube of DMD boys he has treated with this machine that you literally put on the boys hands and feet at night and in the morning. He states that the electrodes are not only slowing down the breaking down of muscle tissus but also restoring them. The machine is about $4500 and insurance does not cover this machine. So I was curious to know if anyone has any info on this treatment of Dr???

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I hesitated on replying as I am trying to advance discussions, and this really doesn't feel like it is achieving that. Ofelia I asked for your opinion in the hopes we could all put our differences aside and explore possible solutions in this quagmire that is 36 families with no baselines. If you don't have the time or inclination that's fine, however if it is because you have somehow misconstrued my sincerity to get answers, then I am sorry, for nothing could be further from the truth.

With regards to the STS treatments page on FB, I am not trying to make any point. You asked for a "one stop page" and I gave it to you. Please don't read into things and go on the defensive when someone is offering you an olive branch.

I am aware that only a few families are cross posting on the STS site (as well as maintaining their own), however I am NOT aware of any other families that are having positive results other than the half a dozen on this page. If there are more out there, then I hope people that know them encourage them to join Melissa's page, I believe they can report their results directly, or she will gladly put them up on their behalf so they can remain anonymous.

The only thing I have drawn out of the low number of families that are reporting positive results on the STS site is that the treatment appears to have a 1 in 6 success rate (approximately). Now in reality the families finding success may be higher, but I (like most families) can only draw conclusions from what I see.



Ofelia Marin said:
Julie, as you well know, there is a page on FB where only SOME (low number) of the 36 families post. Others are posting from their pages, while the majority do not post. I know that you are well aware of this, hence not sure what point you try to make.
Julie.....I don't want to judge anyone....how we as parents and even more our precious boys make it through this horrid disease is only by the grace of God...but PLEASE help me understand this treatment and whatever these facebook pages are!!!!!!! I've been reading everyones comments and everyone wants to put this in whatever box best works for them...which is I guess how we get through this day by day.....but I don't know about this doctor and this treatment...but would like to be informed.......You brought this to the attention of the membership...please teach/or point me in the right directions...THANK YOU for your courage and help....Karen
Karen, as much as I would love to give you a definitive answer to your question at the moment all we have is theories, questions and alternate hypotheses when it comes to how this treatment works, and what benefits may or may not be observed in our boys. However it is natural that every family should want to know whether this treatment holds hope for their family. So by far the BEST advise for anyone to be given is:

Print off the word document that Dr Rhodes has prepared on DMD and his treatment (I have attached it to the bottom of this post). Take it to your pediatrician, neurologist, pulminologist, physiotherapist AND (most importantly) your cardiologist. If they are all in agreement that there is no anticipated risk to your son then you know the worst that is going to happen is you will lose a few thousand dollars if the treatment doesn't work. You will also have the opinions of your specialists on which to base your decision as they will all be able to say whether or not they feel the hypotheses of Dr Rhodes have merit.

I really wish I could tell you more than that, but obviously there are so many potential issues that could play a part in this treatment, including things such as the amount of dystrophin expressed by each individual patient, the age at which treatment commences, the amount of muscle mass that has already been lost. That combined with where the family are at emotionally, and where their son is developmentally will have a huge influence on the decision.

The internet is a fantastic tool for helping us connect with other families. This enables us all to help and support each other through the good times and the bad, however it should never be a substitute for medical advise regarding care plans and treatment options.
What works for one may not work for all, so include your care team in the decision making process regarding STS and I'm sure you will end up making a decision that works best for your son and your family. And if that decision is different to someone elses then so be it. They don't have to live with the consequences of your decision, you do.

I'm sorry that answer is not very helpful, but I really believe this is a personal decision, and that we as parents have spent over a year debating this treatment, yet are still not even in a position to debate actual results and/or facts. I still have some major reservations and points of contention that have yet to be addressed, but even if I were to share them, we have no-one that is in a position to prove or refute them, as we have no scientific data from the treatment (hope that makes sense).

I have taken advise from our care team on the merit of STS for our son, and I know a lot of other families have done likewise. Others have chosen to take a leap of faith based on the fact doing it "the clinical way" is too slow, and not giving them any hope for their sons, and that's their right too. So really there is no right or wrong answer when it comes to STS, you just have to pick the option that you are comfortable with, because at the end of the day your conscience is the only one that you have to be accountable to.


Hope that helps xx



Karen flor said:
Julie.....I don't want to judge anyone....how we as parents and even more our precious boys make it through this horrid disease is only by the grace of God...but PLEASE help me understand this treatment and whatever these facebook pages are!!!!!!! I've been reading everyones comments and everyone wants to put this in whatever box best works for them...which is I guess how we get through this day by day.....but I don't know about this doctor and this treatment...but would like to be informed.......You brought this to the attention of the membership...please teach/or point me in the right directions...THANK YOU for your courage and help....Karen
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Well put Julie!!



Julie Gilmore said:
Karen, as much as I would love to give you a definitive answer to your question at the moment all we have is theories, questions and alternate hypotheses when it comes to how this treatment works, and what benefits may or may not be observed in our boys. However it is natural that every family should want to know whether this treatment holds hope for their family. So by far the BEST advise for anyone to be given is:

Print off the word document that Dr Rhodes has prepared on DMD and his treatment (I have attached it to the bottom of this post). Take it to your pediatrician, neurologist, pulminologist, physiotherapist AND (most importantly) your cardiologist. If they are all in agreement that there is no anticipated risk to your son then you know the worst that is going to happen is you will lose a few thousand dollars if the treatment doesn't work. You will also have the opinions of your specialists on which to base your decision as they will all be able to say whether or not they feel the hypotheses of Dr Rhodes have merit.

I really wish I could tell you more than that, but obviously there are so many potential issues that could play a part in this treatment, including things such as the amount of dystrophin expressed by each individual patient, the age at which treatment commences, the amount of muscle mass that has already been lost. That combined with where the family are at emotionally, and where their son is developmentally will have a huge influence on the decision.

The internet is a fantastic tool for helping us connect with other families. This enables us all to help and support each other through the good times and the bad, however it should never be a substitute for medical advise regarding care plans and treatment options.
What works for one may not work for all, so include your care team in the decision making process regarding STS and I'm sure you will end up making a decision that works best for your son and your family. And if that decision is different to someone elses then so be it. They don't have to live with the consequences of your decision, you do.

I'm sorry that answer is not very helpful, but I really believe this is a personal decision, and that we as parents have spent over a year debating this treatment, yet are still not even in a position to debate actual results and/or facts. I still have some major reservations and points of contention that have yet to be addressed, but even if I were to share them, we have no-one that is in a position to prove or refute them, as we have no scientific data from the treatment (hope that makes sense).

I have taken advise from our care team on the merit of STS for our son, and I know a lot of other families have done likewise. Others have chosen to take a leap of faith based on the fact doing it "the clinical way" is too slow, and not giving them any hope for their sons, and that's their right too. So really there is no right or wrong answer when it comes to STS, you just have to pick the option that you are comfortable with, because at the end of the day your conscience is the only one that you have to be accountable to.


Hope that helps xx



Karen flor said:
Julie.....I don't want to judge anyone....how we as parents and even more our precious boys make it through this horrid disease is only by the grace of God...but PLEASE help me understand this treatment and whatever these facebook pages are!!!!!!! I've been reading everyones comments and everyone wants to put this in whatever box best works for them...which is I guess how we get through this day by day.....but I don't know about this doctor and this treatment...but would like to be informed.......You brought this to the attention of the membership...please teach/or point me in the right directions...THANK YOU for your courage and help....Karen

My daughter was a patient of his back in late 2009.  It was a terrible experience.  Please join my daughters South Texas Innovative Medicine Discussion site.  I'll be detailing my daughter and my  "oddysey" with supporting "screenshots" from his web sites over the incredible  success results (approximately 90%!!) that he used to advertise. He pulled that down around the time we were asking for the data to support that claim....  

My daughter's name is Emily Scribe - You can also read about her travails on the RSD (Reflex Sympathetic Disorder) board oor cintact he directly on Facebook.  She'd LOVE to share her story with anyone who has been to South Txas Innovative Medicine or is contemplating various treatments.

Tanya, all the best to you.  Good Luck!  For discussion on STS treatment--- check out the facebook site South Tesas Innovative Medicine Discussion Forum!--unbiased, discussion, analysis and patient stories.   Information is useless unless shared!! 

My name is Jason Scribe.  I took my daughter Emily Scribe there in November 2009.  We had

a terrible terrible experience.  As a scientist (electrical engineer) I spent months comparing claims he has made throughout the years.  I was determined to come to my PERSONAL CONCLUSION about his operation based on scientific rigor.  I have repeatedly asked for his cooperation and and I have yet to even recieve the courtesy of a response to my requests for data or even simple questions about how success is determined (In November 2009, his web site claimed that approximately 90% of his patients experience AT LEAST (my emphasis) 90% relief.  I'm trying to gain access to that data.  Maybe my daughter was among the unlucky approximate 10%. ...

For discussion on STS treatment--- check out my daughter's facebook site "South Tesas Innovative Medicine Discussion Forum!--unbiased, discussion, analysis and patient stories.  Add it to your favorites.  It's a fair and balanced forum with no agenda - just the truth...

Could you tell me where the 36 families post?  My daaughter has an open discussion forum on South Texas Innovative Medical Discussion Board.  All are welcome to join!!!

Ofelia Marin said:
Sorry guys, this is too much for me, I've wasted enough time. If you are interested in STS contact the doctor. I am assuming that he can facilitate contact between you and other families using it.

Julie, as you well know, there is a page on FB where only SOME (low number) of the 36 families post. Others are posting from their pages, while the majority do not post. I know that you are well aware of this, hence not sure what point you try to make.

PPMD discussed with Dr. Rhodes for a long time, Sharon posted first about it months ago. Pat and Sharon discussed STS during their meetings. They will continue these conversations as they see fit.

Also, the 6MWT along with the North Star assessment are used in other DMD clinical trials at the moment, I don't think that 6MWT will go away anytime soon.

We have recently started the treatment for our son, Joey a 20 year old Duchenne patient that has been in a wheelchair for over 10 years.  We have been very pleased with the results.  As far as a baseline, we as parents know where our child was in regards to this desease and where he is now that we have started the treatments.  It has been simply amazing.  We are not dumb or unable to determine what we are truely seeing.  As for MR SCRIBE, if you are so certain that this is the rip off you claim it too be, then why do you feel the need to send unsolicited messages to people who have chosen to use this and are very happy with the results???  I had read and considered your experience before deciding to try this treatment.  I had also read many more with good results.  It is unfortunate that those enjoying good results feel that they have to keep this to themselves, I for one will not be intimidated!  I would love to see this brought to a study, but my confidence in the md community to bring anything useful to a study in a timely manner ... well let's just say I no longer have that confidence.  I have been battling my son's illness for way too long, with very little real help from the community.  I am now at a point where I will believe it when I see it, and that is exactly the attitude I went to Dr. Rhodes with.  I have seen it, now I believe it!!  Wish I could say the same with the md community.  I for one wish I could put this machine in the hands of every family with  Duchenne's or Becker's. 

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