My son has Duchenne's Muscular Dystrophy. I found an alternative treatment that seems promising.

reply to post by lindsay1984


I came across your post while searching for information on DMD. My wife and I were just given the same diagnosis for our six year old. We're waiting on genetic test results to confirm, but the reality of this type of diagnosis is crushing. I've spent the last few weeks scouring the depths of the internet to get a better understanding of what DMD is, and what treatment options are available. I'm not a doctor, but I have enough of a background in chemistry and biology to understand some of the more technical information available. I wanted to touch base here and share some of the information I've pieced together.

First, I wanted to touch on your statements regarding steroid use in DMD. It should be made clear that the only currently medically accepted treatment for DMD is glucocortico-steroids (prednisone if you are in the US). There is a substantive difference between gc and anabolic steroids used by athletes and weight lifters, not the least of which being that they are administered orally, not via injection. The side effects have a significantly different profile, lower risk for creating the kind of organ damage that anabolic steroids cause, for example.

That said, I'm not completely sold on the use of gc steroids in the ambulatory phase of DMD. Science hasn't been able to fully evaluate the mechanism by which prednisone affects DMD symptoms, and there isn't consensus on dosing schedules or when best to begin therapy. That said, it's probably the most fully researched option, and in our litigation-happy climate I don't fault doctors for being reluctant to skip the established treatment and go to alternative options. We haven't been to see the doctors at our local MDA clinic yet, but I am sadly expecting a similar level of push towards prednisone.

The expected side effects from treatment that most concern me would include weight gain (seems contraindicated in a population with degenerative muscle conditions), osteoporosis, and immunosuppression (also seems contraindicated in a population that suffers from high incidences of respiratory illnesses). The flip side is that it has a clinically established result of maintaining ambulation for a few years beyond the mean, and reduces scoliosis in non-ambulatory kids.

So the primary goal of steroid therapy is to maintain muscle mass and prolong ambulation, and help treat cardiomyopathy and scoliosis in kids with DMD.

There are alternative medications that have been evaluated for use off-label (not for their intended purpose) that show promise in some of the same areas. Oxandrolone, which funny enough actually *is* an anabolic steroid, has been used since the mid-80's to treat patients who suffer from degenerative, wasting illnesses (en.wikipedia.org...) . AFAIK, it's approved for use with patients who have HIV, Turner's Syndrome, and hepatitis. Its side effect profile is less severe than prednisone, and in clinical trials to test it in kids with DMD, I think the most serious side effect was nausea. It has shown measurable improvement in lean muscle mass and measurable strength, but less than what has been shown in glucocortico steroid treatment. IMO, it's worth considering as a first line treatment, prior to loss of ambulation and before prednisone treatment begins, but I haven't talked to a doctor yet so I don't know why it's not a preferred treatment.

Another option is Insulin-like growth factor (IGF-1) (en.wikipedia.org...) . I believe it is currently in clinical trials for treatment of DMD, ALS, and myotonic muscular dystrophy, but it's already been approved for use in growth related disorders. It has a relatively short list of possible side effects, the most serious being hypoglycemia and possible intracranial pressure (though I don't know what risk factors might trigger either). It is actually available as a dietary supplement as well as a prescription drug, and from what I've read it can be absorbed sublingually with a close approximation of intravenous effectiveness (80ish percent compared to IV). That said, the stuff you buy as a dietary supplement isn't closely regulated, so you can't really know for sure that what you buy off the shelf actually *is* IGF-1, or that it has been prepared in a manner that would make it available to the body when given sublingually.

There's also flavocoxid (en.wikipedia.org...), brand name limbrel, which is an anti-inflammatory that is used in osteoarthritis. It belongs to a class of chemical called flavenoids, which are derived from botanical sources.

Another currently available treatment option is a combination of Isosorbide Dinitrate and Ibuprofen, which when used together has shown clinically significant improvements, but the combination is still in trials (phase II or III).

Will continue and post more links below.

Isosorbide Dinitrate is a vasodilator, meaning it opens blood vessels. It has been used for some time in patients with heart disease. Researchers are finding that serum nitric oxide (especially nNOS) plays a major role in facilitating the structural integrity of muscle cells. Not sure why the concurrent usage of ID and Ibuprofen shows a clinically significant improvement over either substance on its own, but that's what they've found so far.

There's also a handful of dietary supplements that have shown enough promise to warrant repeated clinical trials. I'll post some of the links I can find off-hand for you to look at towards the end.

I still haven't really addressed your question, though. You're asking specifically about VECTOR treatment, and you seem to have already made up your mind that it's worth pursuing. I don't know how entrenched you are in your decision that traditional medicine should be disregarded so that you can pursue a miracle cure, so I don't know how much of what I'm about to say is wasted breath, but here goes...

There's a lot of snake oil out there, and people who are intent on either taking advantage of people like us, or who have good intentions but lack the ability to make a sound conclusion about the efficacy of novel treatment options. For any particular therapy to be worth considering, it should be able to be reproduced in open clinical trials. Unfortunately, the VECTTOR/STS treatment hasn't been evaluated in this kind of unbiased manner. You don't know what the success rate is, or even if it is safe for long term use. From what I've read, Dr. Rhodes has been approached by DMD focused groups interested in funding clinical trials of the VECTTOR treatment, but it's been several years and there's no progress made. The videos on youtube are very compelling, but if you spend enough time culling through the internet, you can find at least an equal number of parents who have had no results.

I've had people suggest all sorts of things to me that have no basis in medical science, alkaline diets, avalon lights, biofeedback... I've seen "stem cell" therapy centers that do little more than suck some fat out shake it around and pump it into your muscles. Your kid has a degenerative muscle condition, the protein that holds the outer layer of his muscle cells together is absent. I wish it was some psychosomatic issue that he can think his way out of with some placebo, but it's just not realistic.

It's something that each of us has to reconcile in our own way, but there's an opportunity cost that you lose if you eschew any sort of traditional treatment in favor of an untested treatment. IMO, it doesn't warrant consideration if it can't be shown in a double blind setting to have statistical impact. There are too many other things to try first.

That's my input, as someone who is in your shoes and is feeling that same tug of desperate hope.

Here's some other things to look at:

community.parentprojectmd.org... (Dr. Rhodes' lawyer sends cease and desist to forum discussing his treatment)

www.parentprojectmd.org... (PPMD article on STS and other unproven therapies, including some guidelines for evaluating)

community.parentprojectmd.org... (PPMD approaches Dr. Rhodes about funding trials in 2010, comments from parents who haven't had success, and some that have)

www.plosone.org... (aggregator of clinical research that is freely available, search for duchenne's muscular dystrophy. There are a number of articles on supplements, existing medicines, and new treatment options coming)

clinicaltrials.gov... (use the search tool. Has worldwide clinical trials listed for various treatment options, some ongoing.)

www.lef.org... (list of treatments, including supplements like creatine, glutamine, and references to the research. I would suggest avoiding arginine, researchers are speculating that it can increase fibrosis in muscle tissue)

If I think of anything else that might be of interest, I'll hop back on here and post it. I've been thinking about aggregating some of this information into a single place for parents to go to.

The most important thing is that you keep your spirits up as much as you can, and try to help your boy keep a positive outlook through what is coming.

First let me say that I am so sorry to hear that you are going through this as well. Secondly, Wow! Thank you for your detailed reply. You've given me a lot of information to research. I agree that there is a lot of doctors out there preying on parents like us who are looking for that miracle cure. I am on the fence with doing this treatment still because of the lack of clinical trials. I talked with Dr. Rhodes on the phone for over an hour asking questions and listening to him talk about the VECTTOR machine. He told me that they are in the process of starting a clinical trial within the next couple of months. How true that is, I'm not sure. I am a somewhat religious person but I also believe strongly in everything happening for a reason. I feel like I found this doctor for some reason and I just feel like if I don't try then the what if's will drive me insane.

On the other hand you guys have given me so much new information and I am going to look into all these treatments and see which one is the best. What it all boils down to is what we decide to do for our children. With a terminal disease it is so hard to not want to jump on every treatment with a 1% chance of working but I am really trying to look at everything with a skeptical approach.

To me if it is not causing side effects then what does it hurt to try?

With the steroids the side effects really scared me off. Our PCP went over them stating obesity as a main side effect with the possibility of diabetes, cataracts, bone weakening, etc. If they already have their muscles wasting away, why in the world would I want to give them a medicine that could cause problems like this?

So again I appreciate you sharing your research with me and I wish you and your family the best. We have to be strong for our kids when they can't. Looks like I have some homework to do. Thank you again.

Just an update for those few people that requested updates on my son....

We are scheduled to see Dr. Rhodes in June. We have decided to try the VECTTOR treatments. The EU just approved this machine to be used by patients to treat chronic pain diseases and they are 90 days away from hearing back from the FDA about the machines approval to treat chronic pain. It did pass every test that the FDA and EU put it through to test its durability and safety. Although it has not been approved to treat DMD, and no trial has been done on it's effectiveness to treat DMD, I'm confident after talking with many parents who are currently using this machine for their children that there is a chance it could help treat my sons condition. Many of the boys using this machine to treat muscular dystrophy are showing signs of improvement not only in their voluntary muscles but also their heart and lung functions (again these are parent accounts not accounts or statements made from medical professionals). Many of the boys are able to wear shoes again. Something they haven't been able to do in years. They are able to lift their arms above their heads and play Just Dance 3 at 12 years old. These are huge obstacles to overcome for a child with DMD. Like any treatment there are some boys who have shown no signs of improvement but I'm willing to try this and see if it works. I know it's a large sum of money, but when you compare it to what we would spend on steroid treatments, the VECTTOR really comes out cheaper. I have completely decided against steroids after tons and tons of research and believe me I have researched all available treatments that I can find. We have also started vitamins for my son and he has shown a lot more energy and he isn't near as cranky as usual. He's also been taking Melatonin at night as a sleep aid.

The neurologist was surprised that at almost 8 years old my son is still riding his bike and remaining very active. She said that without any treatments she would think he would be way worse. I'm thinking because he hasn't been on their wonderful steroids for years that it has allowed him to stay active longer but I'm not a doctor so that's just my opinion. She also has another patient using the VECTTOR machine that is showing improvement. She said that she couldn't tell us to pursue a non FDA approved treatment but she also couldn't speak against it because the child she was speaking of has improved. It is a well known fact that boys with DMD never improve with the current treatments available. I hope to report back in a few months that he is improving with the help of the VECTTOR machine but I also know not to get my hopes up. Your well wishes are appreciated and I wanted to again thank you all for your kind words and all the great advice on alternative treatments that I received from you all.

reply to post by lindsay1984


Thanks for posting this, I'm sorry to hear about what's happened, if you know which vaccine caused this please let me know. Somebody close to me went down with the same illness after a Polio vaccine

reply to post by Rubinstein


Well from what I've researched this disease isn't caused by vaccines. This is a genetic disease that is either passed down from mother to child or its a random mutation in the child affected. Once we get the genetic testing back we will be able to see where the actual mutation is and we can then test me to see if I'm the carrier or not. Hopefully I am not because then my daughter could be a carrier as well and if she ever wants to have children her son would have a 50% chance of having DMD. But that's reaching far out into the future and hopefully that won't be the case.

They tend to keep quiet about this, they tell you part of the story, that the people with the disease have similar genes, but what they don't tell you is that if someone with those genes didn't receive any vaccines they would stay in perfect health. Once you mass vaccinate a large number of people, you find that those with certain genes go down with Diabetes Type 1, other types of genes go down with MS, and other with Muscular Dystrophy (many more examples available).

It used to be obvious that after a mass Polio vaccination many of the vaccinated would go down with Polio, the vaccine was causing Polio, people knew this. They wanted to make the vaccine look a success, so they renamed Polio, they gave it a number of new names, for more specific types of Polio. They also didn't want people to realize that it was the Polio vaccine causing this, and with the new names people don't tend to realize.

www.fearoftheinvisible.com...
"Other cases previously diagnosed as polio would in future be classified as ‘cerebral palsy', as ‘Guillain-Barre syndrome' and even as ‘muscular dystrophy.'

The person close to me who went down with muscular dystrophy was perfectly healthy, they received a new Polio vaccine that had just been launched, then afterwards a lot of people in the area went down with muscular dystrophy, including my relative. Interestingly in the case of my relative he didn't even have the genes related to muscular dystrophy, so the parents were told it was a bit of a mystery, but everyone remembered that he had been perfectly healthy up until that "New Polio Vaccine" which was being pushed strongly at the time.

Originally posted by lindsay1984
reply to post by Rubinstein

 

Well from what I've researched this disease isn't caused by vaccines. This is a genetic disease that is either passed down from mother to child or its a random mutation in the child affected. Once we get the genetic testing back we will be able to see where the actual mutation is and we can then test me to see if I'm the carrier or not. Hopefully I am not because then my daughter could be a carrier as well and if she ever wants to have children her son would have a 50% chance of having DMD. But that's reaching far out into the future and hopefully that won't be the case.

It's interesting to read what you just wrote. When my son received the MMR shot at 1 year he regressed in a lot of areas. Before he got the shot he was pulling up on things, trying to walk, saying about 10 words and just a bright happy little boy. The day that we got the shot though things changed. He ran 104 fever that night and the next day after we got back from the ER (where we were told the fever was in no relation the MMR shot and they didn't know why his fever was so high...) my son started acting very different. He no longer bothered to speak. He didn't even try to pull up on anything or try to walk. He wouldn't even crawl. He was zombie like at times where he would just sit there and drool. This went on until he was over two years old. I took him to the doctor numerous times only to be told he was fine, just slow at doing things. It was never mentioned to me that he might have DMD. I literally had to carry my two year old son around because he wouldn't even bother to try and walk. He wouldn't react to our smiles and clapping. He didn't walk until he was over 2 years old. He didn't potty train until 5. (My daughter walked at 7months, and was potty trained at 1 year.) His pediatrician diagnosed him with Asperger's at 4 and we thought that is what he had until March of this year when we found out he has DMD. It has been nagging at me to see what caused this since we have absolutely no family history of DMD. But like I said I don't have the genetic testing back to show if I'm a carrier or not. IF these tests come back and he didn't get this disease from me being a carrier, I will definitely dive more into what could have caused this and see if I can find any correlation to the MMR shot.

The MMR along with Hep B are the two most dangerous vaccines currently available in Western nations. If they were to admit what's going on with MMR it would bring an end to childhood vaccinations (no parent would trust them again), they would also have to pay out $Billions in compensation, so that's why they're going to keep quiet. Instead they say the MMR can be a "Trigger" for Autism, they're just playing with words. Amish people don't become Autistic, they don't receive vaccines either.

Here's Max before and after his MMR www.youtube.com...


Here's a collection of links that give the other side of the picture that's being kept from us

Firstly we have the former Merck Vaccine Chief Dr Maurice Hilleman admitting that the Cancer causing SV40 is in vaccines
www.youtube.com...

Bayer knowingly sold HIV contaminated Vaccines
www.youtube.com...

The independent and internationally renowned Cochrane Collaboration warned that there are no studies showing that the flu vaccines are safe or effective
www.medicalnewstoday.com...

Then we have Cot Death, which ceases to exist when you stop vaccinating under-2's
www.vierascheibner.org...
www.shirleys-wellness-cafe.com...

Was young Max really going to become Autistic, he seems to be doing well beforehand, until he had his MMR. We here the same story again and again, $Trillions of compensation would have to be paid out if it were ever admitted.
www.youtube.com...

A doctor has evidence that all vaccines are causing mini-strokes
vactruth.com...

Next we have the risk of inducing Diabetes Type 1
www.ncbi.nlm.nih.gov...

The old person's flu vaccine causes dementia/Alzheimer's
www.whale.to...

There is evidence that UNICEF sterilize under the guise of vaccination in third world nations
www.lifesitenews.com...

And we also have the the so-called 'conspiracy theorists' who point out evidence of the Swine Flu vaccine being used to get the population down by damaging developing ovaries with Polysorbate 80. organichealthadviser.com...

The 'conspiracy theorists' will also point to the fact that those who live near to the Hepatisis B vaccination stations in Africa are the most likely to have HIV
www.originofaids.com...

There is even evidence that childhood illnesses such as Measles make us stronger, grow taller, and less likely to go down with various Cancers
tv.naturalnews.com...

Here's an interesting survey - Survey Results: Are Unvaccinated Children Healthier?
www.thehealthyhomeeconomist.com...

Interesting vaccine quotes for those interested
www.vaclib.org...

Originally posted by lindsay1984
It's interesting to read what you just wrote. When my son received the MMR shot at 1 year he regressed in a lot of areas. Before he got the shot he was pulling up on things, trying to walk, saying about 10 words and just a bright happy little boy. The day that we got the shot though things changed. He ran 104 fever that night and the next day after we got back from the ER (where we were told the fever was in no relation the MMR shot and they didn't know why his fever was so high...) my son started acting very different. He no longer bothered to speak. He didn't even try to pull up on anything or try to walk. He wouldn't even crawl. He was zombie like at times where he would just sit there and drool. This went on until he was over two years old. I took him to the doctor numerous times only to be told he was fine, just slow at doing things. It was never mentioned to me that he might have DMD. I literally had to carry my two year old son around because he wouldn't even bother to try and walk. He wouldn't react to our smiles and clapping. He didn't walk until he was over 2 years old. He didn't potty train until 5. (My daughter walked at 7months, and was potty trained at 1 year.) His pediatrician diagnosed him with Asperger's at 4 and we thought that is what he had until March of this year when we found out he has DMD. It has been nagging at me to see what caused this since we have absolutely no family history of DMD. But like I said I don't have the genetic testing back to show if I'm a carrier or not. IF these tests come back and he didn't get this disease from me being a carrier, I will definitely dive more into what could have caused this and see if I can find any correlation to the MMR shot.

I feel your pain and understand your caution.

This is difficult - I would say to try anything for a while to see if it helped. Whatever the cost - hopefully you can afford it. If it helps - the pain in your heart will turn more towards joy because you were able to effect a difference.

When a parent has no choices other than to watch as their child slowly deteriorated over time it is a living hell that never goes away because even at your best you could only love your child which you would have done anyway.

To not be able to find effective treatment is extremely painful - for yourself as well as your child! You say a lot of "if only" but then reality sets in and there were no "if onlys out there." By the time medical science improved and the "if onlys became possibilities" your child was already to far gone to help - the hole in your heart grows immensely.

I might have even done the unforgivable act of selling my soul to save my son but he is gone now and medical science had not grown up enough 12 years ago to even try to help him.

He was such a beautiful soul!

But my hands were tied for anything other than letting go when his time came. I was insane with grief for weeks afterwards and to this day "I wish there had been something I could have done!"

I'm 22 and I think I might have muscular dystrophy... The problem is I can't close my right eye and blink with it. I don't know what is happening. I realized yesterday that something might be happening. I cant control my right side of my face.I'm going to see my primary doctor this week. Should I tell her, what is happening or am I simply

Wow! We just got back from seeing Dr. Rhodes in Corpus and I am VERY happy to report that Levi is responding very well to the VECTTOR machine! I've started a blog with updates if you want to read more!

Get Smart About DMD

Here's some of the updates...

Some of Levi’s major accomplishments this week: (Before numbers taken on day one, after numbers taken on day 5.)

Shoulder abduction before treatment was 5.0lbs on the right and 3.4lbs on the left. After treatment it was 4.6lbs on the right and 5.0lbs on the left

Elbow Flex before treatment was 0.0lbs on both right and left. After treatment it was 0.0lbs on the right and 3.4lbs on the left.

Calf Circumference before treatment was 29cm on both legs and now it is 28cm on the right and 27.5cm on the left.

All of this plus on day three of treatment he climbed in and out of the tub, without falling, completely by himself. That hasn’t happened in months. He even went up and down two flights of stairs at the hotel the last two days of treatment. He was able to climb up the pool ladder almost by himself yesterday when on Memorial Day he couldn’t even get up one step. He also threw a lawnmower tire about 7 feet away from him (lol). Now that may not seem like a lot for 7 year old boy but this is a huge improvement for Levi. He is walking straighter, with his legs more together, and his balance is amazing. His energy level is through the roof and he is sleeping through the night without his melatonin supplement. He is eating like a pig and he is all around a happier boy.

Hi
I am from India I saw your Article regarding treatment for DMD for your son and I am searching for treatment for my son age 7 years and request you to provide some information to save my son [snip]

Regards.
[snip]

a reply to: lindsay1984

Hi
I am from India and My 7 years old son with DMD and searching for Alternative treatment. Just now I saw your article and how is your son now.

Please let us know any Alternative treatment for my son I very much impressed with your son result by watching the vidos and best wishes for him.

Please do let us know any possible treatment for my son please be in touch for any suggestion [snip]

a reply to: Baskarrajan

You should remove your phone number and probably your email from your post.

Also this thread has been dead for about 4 years. The OP and most of the respondents have not signed into this site in the last 2-3 years.

a reply to: lindsay1984

Happy to know such improvement for your son with the treatment

a reply to: Dreamwatcher

Please let us know the way to contact them in any case

a reply to: lindsay1984

a new treatment

originally posted by: Rubinstein
Amish people don't become Autistic, they don't receive vaccines either.

Dan Olmsted tripe. Amish vaccinate at about a 70% rate, for the same reason they're vitamin hogs. They believe in prevention.

They don't have as much autism, but they're also a very insular genetic group, one might say 'inbred'. You get all sorts of genetic disorders in Amish you don't see in the general population. Perhaps the group doesn't have a genetic makeup that predisposes to autism.

Going by Olmsted's logic, one might say that by the same reasoning, vaccines must prevent short-limbed dwarfism, an Amish specialty you rarely see in the general population.

My 2 year old has DMD showing no signs as of yet but have decided to follow a nutritional protocol and avoid sreriods. there are many people out their doing this and reversing this disease. Google beat muscular dystrophy. Net or Todd Harrison. He has muscular dystrophy and has some valuable information