Robsupernova

[bluejadedwho]

Does anyone know how to get a hold of the member Robsupernova? He had some amazing theories years ago which I now finally understand through self education. He is definitely onto something. Unfortunately I think one of the moderators was unhappy with his hypothesis even though it's completely harmless. Any help finding a way to contact him would be greatly appreciated.

[StevenSims]

Hi,

If you contact Chris he can give you his email, see this link healthunlocked.com/amneasie...

All the best

[bluejadedwho in reply to StevenSims]

Thank you! Do you know of anyone who has tried his hypothesis? Obviously the mustard seed oil has been used by some, but then there is the addition of the boiled spinach to utilize the phytanic acid.

[KazzyALD]

If you do contact him, I would really like to hear of his theories, like you say, it all sounds pretty harmless if it's based on foods. Maybe it's not best to share on here, so could I be cheeky and ask if you could email me please.

[e-mail]

Thank you in advance bluejade

Karen.

[bluejadedwho in reply to KazzyALD]

Are you able to text? I don't really use emails

[monkeybus]

Wasn't ROBSUPERNOVA advocating people junk their regular medications and embrace his philosophy? Think that was why he was kicked out.

But, I am not knocking his ideas. Could be something in it, the only way to know is to try it.

I speak as a man who has proselytized for all kinds of chemicals on this board. I don't give medical advice though, that is above my pay grade.

I am minded of this post by Chris...

healthunlocked.com/amneasie...

[COwithAMN Administrator AMN EASIER Volunteer]

Hi everyone

Those of us who have been on this forum since the start will have heard about Robsupernova. I won't repeat everything I said at the time, and thank you, monkeybus, for digging out my posting 5 years ago about Robsupernova and his ideas.

healthunlocked.com/amneasie...

There's really not much more I want to say. Most of you are aware that a number of contributors on this forum do postings about various drugs they try. I monitor these and I do not challenge any of them because as far as I know, they are not harmful. I was less certain about Robsupernova's claims as you will see from my comments from 5 years ago. At that time I restricted Robsupernova from posting anymore. But as far as I know, anyone here can send him a private message. To do this, go to his member page at healthunlocked.com/user/rob... and click on Message at top right. Any message is then between you and him. Unfortunately, changes in my computer system mean that I no longer have an email address for him.

If anyone does proceed with ingesting Robsupernova's home-brew and feels it helps them, do post again here.

All the best to everyone.

Chris

[bluejadedwho in reply to COwithAMN]

I suppose this is what I find most frustrating about the turn of events. I do understand your position about not wanting to instill false hope in anyone. I do however think that trying something of a much more natural nature as opposed to these pharmaceutical chemicals is far superior. I've lost a lot of faith in doctors over the years and I'm not about to wait around for them to try to develop something all for the sake of profit. The potential treatments that they are working on now, with the idea of expressing the ABCD2 gene, is exactly what Rob had hypothesized years ago. I strongly believe that the answers are in nature. I would just love to somehow reach him, to discuss how his friend is doing and to see about proper dosages of things. The Mustard seed oil is used by many with no adverse effects. And consuming boiled spinach, can't be all that bad. Definitely not as bad as these chemicals. I have sent some private messages years ago and also recently. Either he is not checking any more so as to not offend anyone with his ideas, or he's not able to as he was restricted. I truly admire his dedication and desire to want to help.

[COwithAMN Administrator AMN EASIER Volunteer in reply to bluejadedwho]

We all have an interest in the development of good therapeutic solutions that could help our disease. But I must take issue with your claim that something that is natural is implicitly superior to something you call “pharmaceutical chemicals”. This is a fundamental misunderstanding of basic chemistry. Whether something occurs in nature or is synthesised in the laboratory does not change the fact that both are chemicals. You say that eating boiled spinach is definitely better than “these chemicals”. I am not sure where to start answering this point since you have obviously decided that pharmaceutical companies are the devil incarnate, just because they must make a profit. You might ponder on this the next time you take paracetamol or aspirin for a headache.

I must also point out that Robsupernova’s aim was to reduce Very Long Chain Fatty Acids (VLCFAs). We all know that this was also the aim of Lorenzo’s Oil, and it succeeded in this, except that the reduction was not able to permeate into the Central Nervous System, probably because of the blood-brain barrier. I was on the Lorenzo’s Oil regimen for about 5years, back in the ‘90s. It did reduce my VLCFAs but did not alter the progression of AMN. And the oil has a potentially dangerous side effect of reducing the white blood cell count, so that the body’s normal blood clotting ability is reduced.

Still, I recognise that you are keen to contact Robsupernova, so I googled his name and found this blog which I am sure is the same man. supaderma.blogspot.co.uk/ The website he refers to doesn’t seem to exist, but the email he suggests may still work.

[bluejadedwho in reply to COwithAMN]

I suppose my opinion about the pharmaceutical companies is engrained in the fact that I have not received a lot of help from any professionals here in Canada. I don't have a lot of faith in their motives. In regards to the the mustard seed oil or the Lorenzo's oil, I think the missing link that Rob was trying to illustrate, was the phytanic acid which if I understand correctly would help the mitochondria dispose of the VLCFA.

Also the idea of trying to express the ABCD2 gene is what they're working on as a viable treatment now. This is exactly that. If it can be done in a more natural way I'm all for it.

We have to be our own doctors and advocate for ourselves. I appreciate your trying to help me find his contact. Unfortunately that link leads to an email that is not active. I don't know any other way I can contact him. It is quite disappointing to be honest.

Be well.

[COwithAMN Administrator AMN EASIER Volunteer in reply to bluejadedwho]

I am really sorry that you have not received good help from professionals in Canada. I have an interest in this, since I lived in Canada for 15 years, and have dual citizenship. I now live in London (U.K.). However, I didn't have a lot of experience with the health system in Ontario where I lived.

I agree with you that we have to be health advocates ourselves. I have been doing this for most of the time I have had AMN. I started the first annual meetings of scientists here in London back in 2004 with a view of exploring AMN. I met some great scientists who were terrific and very interested in AMN. You could consider trying to start something like that in Canada where you live. I just started by finding scientists working in myelin repair and went to see them. Then I found a charity who would pay their expenses in coming to a conference. (They don't charge for their time.) Who could you find in Canada who could take an interest? It's very time-consuming but you learn a lot.

[bluejadedwho in reply to COwithAMN]

I really appreciate your motivating response. It really does mean a lot. I have my moments, as I suppose we all do having great frustration and a sense of just wanting some relief. We have decent healthcare, and I think are known for that in some parts of the world. However, we seem to be the last out of everyone to get information about or get new treatments approved. (In Canada)

[monkeybus]

What's to do?

Rob was no scientist, nor was he a doctor. Not in any way, shape, or form.

His "protocol" seems simple enough. Though I prefer my spinach lightly fried in butter.

Green smoothies? Well, sign me up. But, let's be honest, if it worked then news would spread like wildfire. There is no grand conspiracy here.

Wahls, ketogenic, paleo. Diet could be a factor, certainly my symptoms really exploded when I stopped being a vegetarian.

I've been obsessively researching our disease since I was diagnosed. And I've posted about what works, all chemicals. Trust me, if it worked, I'd be smoking crack (if it worked).

Don't smoke crack, kids.

Lowering VLCFA is the holy grail, if Rob was onto it he wouldn't have been banned, and even then he could've started his own blog.

But does it work?

Let's all buy some spinach, only way to find out.