Alternativ treatments for genetic muscle disorder???

[Gneh Onebar]

For a year and a half I’m struggling with severe loss of muscle mass and strength in my upper body – right side is more affected than the left. Doctors think I have a very rare genetic muscle disorder called Facioscapulohumeral muscular dystrophy (FSHD), that affects mainly muscles of the face, shoulder blades and upper arms. Currently I’m waiting for the results of the genetic test they did.

As far as I know western medicine has no cure for this specific genetic disorder, so I’m looking for suggestions or informations on alternative treatments. Every advice is very much appreciated. Feel free to list your ideas here and thank you in advance.

[Michael569]

 

Go to 33;49.

Dr Morse is the greatest healer I have ever come across. Their cases are mindblowing when you watch some of his 500 videos. Here, he is discussing a case of spinal muscular atrophy of someone who is on wheelchair but says these cases are similar, could find any other related video. So as a tip for you. Do your research and see if this resonates with you. Personally, if I was diagnosed with a genetic disease I would probably follow his protocol and see if that could produce any results. 

 

Edited February 22, 2019 by Michael569

[Gneh Onebar]

@Michael569 Thx for the tip. This sounds promising. I will definitely do further research.

[Hellspeed]

Heal you gut with animal bacteria, raw animal products and animal saturated fat. 

[Gneh Onebar]

@Hellspeed Thx for you advice. Can you say a few words on how the healt of the gut is connected to muscle loss?

[Hellspeed]

2 hours ago, Gneh Onebar said:

@Hellspeed Thx for you advice. Can you say a few words on how the healt of the gut is connected to muscle loss?

The basis of the immune system and brain resides in the gut. Is where the "nuclear power" of the body takes place. You heal that, you heal all the body.

So, to heal that you need to repopulate and balance the bacteria in the gut. Only Animal products can do that, and raw, not cooked. There is no bacteria in cooked food. So, go cured cheese, yogurt, raw eggs, in the case you don't like raw meat because at first is not fun  

So, the best will be finding raw milk, if not, then you let the milk open at room temperature for 1-2 days, after you drink it. Same with the cheese if is packed in plastic, you cut it in small pieces, you let that at room temperature a couple of days. Also you can get dried meat, you do the same if it's in plastic package. Don't worry about bacteria, virus and parasites, they are a myth if you don't cook your food. If you cook the food there will be always a danger, but that does not mean that once in a while you could not have a cooked meal. I up to tested for yourself, what is good for you in the first place. 

Edited February 24, 2019 by Hellspeed

[Gneh Onebar]

@Hellspeed Thank you for your explanation. I will now have to find out, what works best for me.

[Navya_Sharma]

Muscular dystrophy is a group of disorders which include loss of muscle mass and loss of muscle strength. The muscle dystrophy is characterised by the weakness and also by the degeneration of the muscles which control movement of the body. Clinical trials are ongoing on muscle dystrophy and scientists are hoping that the stem cells if introduced into the body of the patient can help in generating new muscle cells. These new cells can help in replacing the damaged cells.

[Dimi]

On 2/24/2019 at 11:53 AM, Hellspeed said:

The basis of the immune system and brain resides in the gut. Is where the "nuclear power" of the body takes place. You heal that, you heal all the body.

So, to heal that you need to repopulate and balance the bacteria in the gut. Only Animal products can do that, and raw, not cooked. There is no bacteria in cooked food. So, go cured cheese, yogurt, raw eggs, in the case you don't like raw meat because at first is not fun  

So, the best will be finding raw milk, if not, then you let the milk open at room temperature for 1-2 days, after you drink it. Same with the cheese if is packed in plastic, you cut it in small pieces, you let that at room temperature a couple of days. Also you can get dried meat, you do the same if it's in plastic package. Don't worry about bacteria, virus and parasites, they are a myth if you don't cook your food. If you cook the food there will be always a danger, but that does not mean that once in a while you could not have a cooked meal. I up to tested for yourself, what is good for you in the first place. 

Wow, why do you believe that? On what facts are you suggesting this?

Here is decent science and easy to understand done by non corporate funding:

I quote:

"Red meat, high-fat dairy products, and fried foods all reduce the growth of healthy bacteria and enhance the growth of “bad” bacteria linked to chronic disease."

@Gneh Onebar See this please

And if you are serious, read this

Feel free to ask anything

 

 

Edited June 29, 2019 by Dimi

[Gneh Onebar]

@Navya_Sharma Thx for the reference. Already read about it. 

[Gneh Onebar]

@Dimi I am going to read the articles, thx. I tried already the Morse protocol (only raw vegetables, fruits and nuts) for six weeks straight, but I lost weight and also muscles to the point, that I stopped it for now. I know that this loss could be a sign of the cleaning process, but I didnt have any typical cleaning signs like mucus leaving the body as mentioned in his book (The Detox Miracle Sourcebook). I think my diet is already quite good, and maybe my expectations were too big. What I experienced whereas was a higher level of energy and more clarity of the mind especially during my daily meditation sessions.

[Dimi]

On 8/21/2019 at 8:15 AM, Gneh Onebar said:

lost weight ... only raw vegetables, fruits and nuts

Only raw is not suitable for everyone directly, depends on a lot of things (which diet you come from, your digestion system and many other aspects).

I would suggest to mix and try to find a balance, eat cooked, half cooked and raw, eat a lot of everything and don't forget that your system might digest plant based food much faster, hence you should eat more as well for not losing weight (either more small portions or bigger meals, depending on what and how you eat) I would suggest more at once, this is better (overall) for you system not to get "confused". (I can tell you more on that if you wish)

Don't leave out the nuts and seeds, they are essential

Don't hesitate if you have any question and i would like to add this as well, try not to make it to "serious", i don't mean it is or isn't serious, thats up to you to decide for yourself, what i mean is you should try to maximize your experience of it all to a enjoyable one, something that actually makes you feel better from the inside out

❤️?

[Gneh Onebar]

@Dimi@Dimi Here is one question for you : Do you know if there is any evidence that a specific diet can positively influence a genetic disease? Doctors told me that there is no such evidence – at least not for FSHD. At the same time they told me to not only trust their opinion, but to try and see for myself what could possibly improve my condition. 

[Zega]

A regular massage helps the muscles sit in a more relaxed and toned way

[Michael569]

On 21/08/2019 at 7:15 AM, Gneh Onebar said:

I am going to read the articles, thx. I tried already the Morse protocol (only raw vegetables, fruits and nuts) for six weeks straight, but I lost weight and also muscles to the point, that I stopped it for now. I know that this loss could be a sign of the cleaning process, but I didnt have any typical cleaning signs like mucus leaving the body as mentioned in his book (The Detox Miracle Sourcebook). I think my diet is already quite good, and maybe my expectations were too big. What I experienced whereas was a higher level of energy and more clarity of the mind especially during my daily meditation sessions.

I think you should work with a specialist on this one. Dr Morse often says that in a cleansing/detoxification protocol you have to go very deep when faced with chronic progressive condition to get rid of the cause on the systemic level. That often means becoming very skinny and then rebuilding the tissue by starting to add sources of protein. But this is really difficult to do on your own so I'd probably look to get a support from a naturopath or detox specialist. Medicine will be useless on this as they are with everything that is not A&E or accident management. 

[Dimi]

On 8/27/2019 at 0:55 PM, Gneh Onebar said:

@Dimi@Dimi Here is one question for you : Do you know if there is any evidence that a specific diet can positively influence a genetic disease? Doctors told me that there is no such evidence – at least not for FSHD. At the same time they told me to not only trust their opinion, but to try and see for myself what could possibly improve my condition. 

Out of own research, based on personal experience I would suggest you a varied plant based diet with some muscle fortifying supplements in your case. There is evidence but that's up to you how to interpret that of course . This study for example is elaborated from many sides, the conclusion is ANTIOXIDANT (this is what you are after and want to implement as much as possible!) Here is some more info about antioxidants.

Things to avoid are foods such as white breads, sugars and pasta. Additionally, you should avoid coffee and other stimulants such as alcohol and tobacco.

"Antioxidant" is not really the name of a substance, but rather it describes what a range of substances can do.

Vitamin A, C, E, beta-carotene, lycopene, lutein, selenium, manganese, zeaxanthin, flavonoids, flavones, catechins, polyphenols, and phytoestrogens are all types of antioxidants and phytonutrients, and they are all found in plant-based foods.

Each antioxidant serves a different function and is not interchangeable with another. This is why it is important to have a varied diet.

Here are some sources I know are packed with antioxidants:

Fruits: Berries (strawberries, blueberries, acai berries, goji berries), plums, pomegranates, grapes, pumpkin, mangoes, apricots, tomatoes, and apples

Veggies: Broccoli, cabbage, cauliflower, kale, eggplant, carrots, spinach, and red bell peppers

Roots and shoots: Green tea, parsley, garlic, leeks, and onions

Legumes: Black beans, pinto beans, kidney beans

 

Here is another list: https://www.healthline.com/nutrition/foods-high-in-antioxidants

Here is some good reading (The China Study) not directly relevant to FSHD but yet it is

 

In addition of what @Michael569 said, if you feel you are not "up to it" (which let's face it, is a mindset you decide) than you can go and seek help but be careful because it can be "dangerous" letting your health rely in someone else's hands or at least a great part of it.

You should, like this consciousness work on Actualized try to figure things out in your own experience, looking, searching and listening to others (including me) is good to a certain extend. Somewhere along the line YOU should take responsibility and actions based on your experience

I'm always here if you have any questions.

Take care

❤️?

(You can PM me because i don't always look where i posted in for replies )

[Gneh Onebar]

@Michael569 Yep… you may be right. 

[Gneh Onebar]

@Dimi I really appreciate your help, thank you for all the infos and the links!  I will try a plant based diet and see how that goes. On that basis I could also start a new more radical cleansing process like the Morse protocol or try fasting.

In the future I pm you, if I have any questions. 

[Michael569]

11 hours ago, Gneh Onebar said:

On that basis I could also start a new more radical cleansing process like the Morse protocol or try fasting.

just a suggestion, if you are going to go down that road, some of the botanical tinctures they make could prhaps come useful. It is hard to say which one though. I see you live in Germany. This article talks about where they can be ordered in Europe. https://drrobertmorseeurope.wordpress.com/2016/02/18/how-to-buy-dr-robert-morses-herb-in-europe/

I am in the UK and we do have a small company who sell them who also ship all over Europe. They may be able to advise which ones to try if you contact them. http://thejuiceretreat.co.uk/drmorseherbs/ The company is run by a lady named Helen, she is a Detox Specialist category II, trained with Robert Morse. 

Ofcourse none of this may be needed but could help 

[Gneh Onebar]

@Michael569 Ok cool, good to know!