Dr Donald Rhodes in Texas
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???
Replies to This Discussion
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Permalink Reply by Ofelia Marin on
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I agree Cheryl.
cheryl cliff said:Couldn't agree with you more Ofelia. And yes, I missed the entire fb nonsense that must've taken place earlier or who knows when. Personally I think anyone that wants to take on an experimental treatment I am 100% for! Nobody asked my opinion, which is fine. Yet I, among others, have been subjected to name calling and cut off. This isn't rational behavior.
Just as you, I am NOT here to fight and have many, many better uses of time. Instead I was hoping to continue dialog in order to help remedy a stupid situation. So although this issue has nothing to do with me personally, what I see bothers me because it continues to splinter an already tiny group of people who need to stay connected to benefit all our guys.
Like I said, information is useless unless it is shared. Sharing has nothing to do with name calling & 'offing others.
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Permalink Reply by Julie Gilmore on
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Well at least we all agree on the need for open and effective communication!
However, NEITHER side has exclusive rights to cry victim here - there has been mud slinging going in both directions, and as a result parents that are finding NO benefit from this treatment are also too scared to put up their "results" in case they are subjected to the vitriol that appears to surface whenever this treatment is questioned.
Swearing, name calling and sending private emails to people putting them and their families down should NEVER be tolerated under any circumstances - and yet it would seem anyone who questions this treatment is being subjected to these very personal attacks as par for the course.
There is a website on facebook where parents can share their personal stories on how their boys are responding to STS. If you read through it, it is a very positive page, with no input from anyone that has concerns as they recognise that parents must be free to share their own experiences. However, the same respect does not appear to be shown when people raise concerns or ask people that have done the treatment to shed some light on some of their questions - which saddens me greatly.
Here's hoping that now PPMD and Sharon Hesterlee are in talks with Dr Rhodes, parents will stop attacking each other, and start working together (like we used to before this treatment divided our community). We all want whats best for our our boys - it's just a shame that differences in opinon are not being celebrated - for it is debate that finds the most effective route in any procedure or treatment..... when the masses agree we often lack the incentive to question, analyse and improve .........
Ofelia Marin said:I agree Cheryl.
cheryl cliff said:Couldn't agree with you more Ofelia. And yes, I missed the entire fb nonsense that must've taken place earlier or who knows when. Personally I think anyone that wants to take on an experimental treatment I am 100% for! Nobody asked my opinion, which is fine. Yet I, among others, have been subjected to name calling and cut off. This isn't rational behavior.
Just as you, I am NOT here to fight and have many, many better uses of time. Instead I was hoping to continue dialog in order to help remedy a stupid situation. So although this issue has nothing to do with me personally, what I see bothers me because it continues to splinter an already tiny group of people who need to stay connected to benefit all our guys.
Like I said, information is useless unless it is shared. Sharing has nothing to do with name calling & 'offing others.
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Actually, the point I wanted to make was different as I have no information about anyone crying victim and I am not interested in it. In fact, people I talked to simply said that using the machine is a personal decision hence do not see the need to explain anything to anyone.
My point is that, if we want to have a clear read on the changes observed or not, collection of data needs to be performed by a third party. My understanding from Sharon's blog is that conducting an STS clinical trial is costly hence the first step would be an observational study. This would not be the first time such a study is conducted in the DMD community. Many of us used Protandim for years, for example, based on observational data. Recently, papers have been published about benefits in other health conditions and in the mdx animal model for DMD.
Obviously, funding/planning/consulting and involving specialists/collecting and analyzing data is required even for an observational study.
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Permalink Reply by cheryl cliff on
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The only "victims" in this whole knot are our boys. And, of course Ofelia, nobody is forced to share information about their son's condition or anything else going on in their lives. That's their right, without question. No need to explain choice and use of anything to anyone.
But in my wacky head rights carry responsibilities, which no doubt makes me a nut case to some :) of course all of which is fine with me. We are, after all, connected here and other places for the purpose to communicate and help heal, and improve the lives of all with DMD. Sequestering and cutting off doesn't allow that purpose to continue.
Ofelia Marin said:Actually, the point I wanted to make was different as I have no information about anyone crying victim and I am not interested in it. In fact, people I talked to simply said that using the machine is a personal decision hence do not see the need to explain anything to anyone.
My point is that, if we want to have a clear read on the changes observed or not, collection of data needs to be performed by a third party. My understanding from Sharon's blog is that conducting an STS clinical trial is costly hence the first step would be an observational study. This would not be the first time such a study is conducted in the DMD community. Many of us used Protandim for years, for example, based on observational data. Recently, papers have been published about benefits in other health conditions and in the mdx animal model for DMD.
Obviously, funding/planning/consulting and involving specialists/collecting and analyzing data is required even for an observational study.
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Permalink Reply by Keith Van Houten on
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Ofelia Marin said:In fact, people I talked to simply said that using the machine is a personal decision hence do not see the need to explain anything to anyone
I don't think anyone disagrees that it's a personal decision to pursue STS treatment for their son or not. And they're certainly under no obligation to share their decision, experience, or results with anyone else. I personally appreciate it when they do - as it helps us all make better informed decisions for ourselves.
I think the crux of the disagreement in our community is whether MD advocacy organizations like PPMD should be using their financial resources (and time) to investigate this more thoroughly at this point in time, with the information we currently have.
We're all entitled to our own opinions on that, and should be respectful to those we might disagree with. We're all in this together, after all...
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Cannot agree more Keith and Cheryl.
We can only eliminate some of the noise (name calling, disrespectful remarks, fighting over this or that "possible" side effects, this or that "possible" improvement or change) if data is collected in a controlled maner. There are 36 families using the machine now, right? I would assume that most of them would provide information anonymously?
Now more importantly, what variables/tests need to be measured (MRI, blood test etc.?)... no one seems to know. Hence involving specialists is necessary. This means need for funding. Is anyone interested in funding such a thing, and I am not talking about a clinical trial which would be much more expensive AND would require a LOT of commitment... this machine needs to be used 40 minute twice a day every day. Would boys in both STS treated and PLACEBO group have to go to a certain office 1 hour every day to use the machine? Would they be trusted to use the machine properly at home w/o skipping sessions every day for the next 6-12 months? And the list continues.
It is as simple as this. If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
As a side comment, I do not have time to spend a few hours/day on FB to go to X, Y, Z's page and read about STS...at the very minimum it would be great if all comments are in one page. It would be even better if that page contains observations of parents using the machine and not what the rest of us not using it think it does or doesn't do. And Cheryl, I am not using STS for Robert at the moment but I am grateful that many parents using it shared their experiences with me privately. You are an open minded person, hence I am confident that you could also find the information you are looking for if you ask.
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Thank you Ofelia for the kind words, they are much appreciated. You see, until this week I had no idea there was a private STS trial going on anywhere, let alone that there were 36 families involved. I thought one might be coming up but was unaware of anything else, because I don't have a path into "their" secluded world. Nor do I have the time, like you, to follow each parent individually even if I figure out who they are. I thought that's why we as a group of dmd parents had PPMD and FB.
I hope your assumption turns out correct, that somebody will provide data, information or opinions eventually about their STS use, good and bad. All information is important. But with such a secluded group who've splintered themselves off from the rest of, I can't hold my breath.
Much congratulations to Curtus Renard for meeting with Paul and myself (quite awhile ago now) and for his honesty in coming forth to share his son's information regarding stem cell experiments. Although his input didn't mean we personally were ready to sign Alex up for treatments, Curtus did the right thing. He is extremely honorable and I'm not sure how many more guys like that are out there.
Ofelia Marin said:Cannot agree more Keith and Cheryl.
We can only eliminate some of the noise (name calling, disrespectful remarks, fighting over this or that "possible" side effects, this or that "possible" improvement or change) if data is collected in a controlled maner. There are 36 families using the machine now, right? I would assume that most of them would provide information anonymously?
Now more importantly, what variables/tests need to be measured (MRI, blood test etc.?)... no one seems to know. Hence involving specialists is necessary. This means need for funding. Is anyone interested in funding such a thing, and I am not talking about a clinical trial which would be much more expensive AND would require a LOT of commitment... this machine needs to be used 40 minute twice a day every day. Would boys in both STS treated and PLACEBO group have to go to a certain office 1 hour every day to use the machine? Would they be trusted to use the machine properly at home w/o skipping sessions every day for the next 6-12 months? And the list continues.
It is as simple as this. If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
As a side comment, I do not have time to spend a few hours/day on FB to go to X, Y, Z's page and read about STS...at the very minimum it would be great if all comments are in one page. It would be even better if that page contains observations of parents using the machine and not what the rest of us not using it think it does or doesn't do. And Cheryl, I am not using STS for Robert at the moment but I am grateful that many parents using it shared their experiences with me privately. You are an open minded person, hence I am confident that you could also find the information you are looking for if you ask.
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What private trial? I did not say anything about a private trial.
cheryl cliff said:Thank you Ofelia for the kind words, they are much appreciated. You see, until this week I had no idea there was a private STS trial going on anywhere, let alone that there were 36 families involved. I thought one might be coming up but was unaware of anything else, because I don't have a path into "their" secluded world. Nor do I have the time, like you, to follow each parent individually even if I figure out who they are. I thought that's why we as a group of dmd parents had PPMD and FB.
I hope your assumption turns out correct, that somebody will provide data, information or opinions eventually about their STS use, good and bad. All information is important. But with such a secluded group who've splintered themselves off from the rest of, I can't hold my breath.
Much congratulations to Curtus Renard for meeting with Paul and myself (quite awhile ago now) and for his honesty in coming forth to share his son's information regarding stem cell experiments. Although his input didn't mean we personally were ready to sign Alex up for treatments, Curtus did the right thing. He is extremely honorable and I'm not sure how many more guys like that are out there.
Ofelia Marin said:Cannot agree more Keith and Cheryl.
We can only eliminate some of the noise (name calling, disrespectful remarks, fighting over this or that "possible" side effects, this or that "possible" improvement or change) if data is collected in a controlled maner. There are 36 families using the machine now, right? I would assume that most of them would provide information anonymously?
Now more importantly, what variables/tests need to be measured (MRI, blood test etc.?)... no one seems to know. Hence involving specialists is necessary. This means need for funding. Is anyone interested in funding such a thing, and I am not talking about a clinical trial which would be much more expensive AND would require a LOT of commitment... this machine needs to be used 40 minute twice a day every day. Would boys in both STS treated and PLACEBO group have to go to a certain office 1 hour every day to use the machine? Would they be trusted to use the machine properly at home w/o skipping sessions every day for the next 6-12 months? And the list continues.
It is as simple as this. If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
As a side comment, I do not have time to spend a few hours/day on FB to go to X, Y, Z's page and read about STS...at the very minimum it would be great if all comments are in one page. It would be even better if that page contains observations of parents using the machine and not what the rest of us not using it think it does or doesn't do. And Cheryl, I am not using STS for Robert at the moment but I am grateful that many parents using it shared their experiences with me privately. You are an open minded person, hence I am confident that you could also find the information you are looking for if you ask.
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Ofelia Marin said:If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
The question is how badly do we want the answer regarding STS. A $350,000 trial, or even a pilot trial at $100,000 represents a pretty significant percentage of the research grant budget of an organization like PPMD. According to their annual report, there were $866,000 in research grants awarded in 2009. The resources are not limitless. In a perfect world, we can explore every avenue with even the slightest hope for success. In our world, decisions have to be made on where to focus our efforts and limited resources. Do we want to take resources away from other exploring other potential therapies to get an answer on this one? Some will say yes, some will say no.
At the rate that Dr. Rhodes' business is expanding, he should have enough money before long to fund his own scientific studies. $4000 apiece, times 36 machines is $144,000. If the machine worked, and he could prove it scientifically, there's an enormous profit potential. 20,000 new cases a year times $4000 is $80 million. Per year. And - if it was a proven success, he could probably charge much more than he is now. Capturing even a small part of that market makes for a pretty nice little business.
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And this is why I think that a clinical trial will NOT happen. Just my 2 cents.
Keith Van Houten said:
Ofelia Marin said:If we really want to have an answer to our question we need to think in terms of accurately collecting and analyzing some data. Otherwise we can go back to the status quo. We all know that funding is limited, drugs are on the waiting list for years until funding is secured. How many years have we talked about a "possible" losartan trial after having promising data in both mdx and dogs? It would not be surprised at all if STS would never be tested.
The question is how badly do we want the answer regarding STS. A $350,000 trial, or even a pilot trial at $100,000 represents a pretty significant percentage of the research grant budget of an organization like PPMD. According to their annual report, there were $866,000 in research grants awarded in 2009. The resources are not limitless. In a perfect world, we can explore every avenue with even the slightest hope for success. In our world, decisions have to be made on where to focus our efforts and limited resources. Do we want to take resources away from other exploring other potential therapies to get an answer on this one? Some will say yes, some will say no.
At the rate that Dr. Rhodes' business is expanding, he should have enough money before long to fund his own scientific studies. $4000 apiece, times 36 machines is $144,000. If the machine worked, and he could prove it scientifically, there's an enormous profit potential. 20,000 new cases a year times $4000 is $80 million. Per year. And - if it was a proven success, he could probably charge much more than he is now. Capturing even a small part of that market makes for a pretty nice little business.
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Ofelia Marin said:
"As a side comment, I do not have time to spend a few hours/day on FB to go to X, Y, Z's page and read about STS...at the very minimum it would be great if all comments are in one page. It would be even better if that page contains observations of parents using the machine and not what the rest of us not using it think it does or doesn't do."
So perhaps you misunderstood my original reply yesterday when I said:
"There is a website on facebook where parents can share their personal stories on how their boys are responding to STS. If you read through it, it is a very positive page, with no input from anyone that has concerns as they recognise that parents must be free to share their own experiences"
By the sounds of it this page is exactly what you are looking for. It is called "STS Treatment for DMD".
Ofelia Marin said:
"We can only eliminate some of the noise (name calling, disrespectful remarks, fighting over this or that "possible" side effects, this or that "possible" improvement or change)"
That is not the only way to eliminate the noise. We can as a community recognise that there will always be two opinions to this treatment (even if trials are done) the same way there are two opinions on steroids, vaccinations and nutraceuticals. That's ALL that is needed here, a little respect for both sides of the coin. Maybe if we manage to negotiate a status quo, we may start getting some answers to the questions being raised, rather than having people continue to shoot statments down by implying people are asking about "possible" problems. EVERYTHING in science is assumed possible until proven otherwise, that is why we test the hypothesis, with the intent to create an alternative hypothesis if required.
Cheryl Cliff said:
"But in my wacky head rights carry responsibilities"
Well said Cheryl (although I think your head is anything BUT whacky!) I know that some parents who are using the treatment are staying silent for a number of reasons (some are very sad indeed) but silence does not share data, silence does not prove or dismiss a couple of key facts about the treatment: a) whether or not it WORKS and b) whether or not it has any impact on cardiac function (yes thought I would mention the elephant standing in the corner).
So lets put the issues of treatment/contraindications to one side for a moment (as this thread is becoming a fantastic discussion) and contemplate the fact that because so few of the current 35 boys doing the treatment had full baselines performed what (if any) data can we collect from them? We can't assess heart function (we don't know if any had underlying issues prior to treatment, so if there is a problem, was it pre-exisiting or due to STS?) we can't assess nett strength changes, because as proven in the PTC124 the 5MWT is NOT a reliable indicator and physio assessments are subjective too. We can't do a muscle biopsy to prove increased number of myofibers, or improved organisation of myofibrils ........we can't even do a western blot, as (again) there is nothing to compare it to.
Ofelia I would love to hear your thoughts on whether a study group of 35 is even statistically significant in this situation, and would also love to hear your opinion (as a statistician) on what information you feel we CAN get from these families that could be quantified and reported with any certainty, as it would be a shame for their pioneering efforts to not be recognised.
In the meantime I sit here right now and wonder ..... as there are still a lot more parents wanting to go to Texas should an organisation like PPMD intervene, buy some machines, get someone like Sharon Hesterlee trained on teaching parents, and take the next "wave" of families wishing to use STS under their care, so they can run baselines and do a "low cost" proof of concept trial that way? There is an added bonus to them doing this - it will enable Dr Rhodes to focus on the admin side, and finish his FDA application etc, so by the time the 6 months period is up he not only has clinical results, but an FDA approved machine that is able to funded by health insurance companies (which would ease the financial burden on families significantly). It would also give him time to train up personnel in all the main clinics, so families did not have the substantial costs associated with travelling to Texas - instead they may be able to do it while attending their 6 monthly (or annual) clinic appointments .
Crazy talk? I don't know, but we have to try and do something otherwise we are going to remain a community divided, and the only ones that will suffer will be the boys.
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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.
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