Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

[bthompsonjr1993]

@bctjr1993 yeah, same here. Trying to get SS31/Elamipretide for some time now. Sadly its not that easy and the only way right now is Alibaba with some shady stuff for moon prices. So the only thing is wait right now. Its in fast track mode for Barth Syndrom and could be available at the end of the year as off label use hopefully.

If it becomes available off-label, the trick would be finding a doctor to prescribe it for you, wouldn't it?

 

[Learner1]

Thank sos much @Learner1 I will definitely look into it. I might make a new thread to discuss this topic too if you don't mind, as @ScottTriGuy has some interest/questions too.

You're welcome. Yes, set up a new thread and tag me.

 

[MonkeyMan]

If it becomes available off-label, the trick would be finding a doctor to prescribe it for you, wouldn't it?

I would think any compassionate, open-minded physician would be willing to give it a try. As you will see in this excellent article, elamipretide is a very well-tolerated agent. Some local injection-site reactions and few cases of headache and nausea, that's pretty much it.

 

[ScottTriGuy]

You're welcome. I've just been following breadcrumbs left by the researchers and have been fortunate to have naturopathic doctors who knew some about this and were curious to help me explore.

Awesome, thanks @Learner1 - the papers will be helpful and I'll have time this weekend to peruse and (try to) digest the dynamics.

 

[Learner1]

Awesome, thanks @Learner1 - the papers will be helpful and I'll have time this weekend to peruse and (try to) digest the dynamics.

Let me know if you have questions. I know you've been following what I've shared for quite awhile.

 

[Badpack]

@bctjr1993 hopefully without sounding like a jerk now, i would just go to the pharmacy day 1 and just buy it haha. Im a doctor.

 

[Learner1]

Yes, I don't doubt that he has great idea like that. I just think it will be years before we have anything that is widely accepted and readily available for patients at doctor's offices

Yes, but you can do:

1. A MitoSwab test
2. PCR blood and CSF tests for viruses, maybe tissue cultures, not just antibody tests.
3. Nitrotyrosine test and tests for lipid peroxides which will give clues to mito membrane damage
4. 8OH-dG which tests for ongoing DNA damage

I'm not of a mind to sit around and wring my hands and wait 3-10 years for research tests to become available to patients. I gave my blood to Stanford 3 years ago and never got any info from it. If we want to get well now, we have to use tools available now.

 

[raghav]

Did you read the papers I posted? I do not think its inhibiting complex I any more than it already was but will test soon to see.

BH4 is a natural substance that everyone needs. Your paper says BH4 toxicity can lead to oxidative stress that can impair mito complexes. My BH4 is LOWER tgan most people's so I don't think adding a tiny dose of Kuvan will make me toxic with it. What is toxic is the peroxynitrites that damage mito membranes and impair complex I. Which can itself lead to Parkinson's.

But, please read the papers.

Thanks @Learner1 The reason why I am interested in Kuvan is since its generic is avaialable in India I can try it. I just have to address the other issues which you have highlighted and addressed in your case. Anyway thanks for the papers. I will dig deep into them. Some of the supplements that you are taking are very costly in India. I have to import them and the duty is quite high. So let me see whether kuvan in small doses helps me. Thanks again.

 

[Learner1]

Thanks @Learner1 The reason why I am interested in Kuvan is since its generic is avaialable in India I can try it. I just have to address the other issues which you have highlighted and addressed in your case. Anyway thanks for the papers. I will dig deep into them. Some of the supplements that you are taking are very costly in India. I have to import them and the duty is quite high. So let me see whether kuvan in small doses helps me. Thanks again.

You are welcome. The BH4 is effective WITH folate, B12 and C so you would want all of them together. I take an average of 10mg MB12, 13mg 5-MTHF and 2-4g C daily (which are very high doses, I know, but I have enormous oxidative stress I'm battling). You may not need that much, but you likely need some.

Best wishes...

 

[raghav]

Thx @Learner1 Will keep those supplements in mind.

 

[raghav]

Prusty is not able to work in the lab anymore. They are in total lockdown. I dont know how long the lockdown will last in Bavaria.

 

[raghav]

https://twitter.com/i/web/status/1242339471028137990

Lets see what his response is.

 

[Badpack]

Prusty is not able to work in the lab anymore. They are in total lockdown. I dont know how long the lockdown will last in Bavaria.

talks is about around eastern to start loosen it again

 

[perrier]

https://twitter.com/i/web/status/1242339471028137990

Lets see what his response is.

Dear Raghav
I thank you from the depth of my being for all you are doing to try to keep us informed and trying to keep our courage up

 

[MonkeyMan]

Dear Raghav
I thank you from the depth of my being for all you are doing to try to keep us informed and trying to keep our courage up

As do I. Thank you Raghav!

 

[raghav]

Dear @perrier and @MonkeyMan I am also in a sinking boat so I know what it feels like. Lets make it happen. Lets hound Prusty till he gives in and releases the list of transfer factors and diagnostic tests for the same. I know he is trying to get some mileage out of it. But he is not greedy, that much I am able to say from his emails and tweets. He just wants a way out of HHV-6 research to go into a better paying job (From his tweet where he says Professors in US draw 1-2 million USD per annum whereas the researchers under them who do the actual work get hardly 200k per annum) Lets see how best we can help him in raising his profile. I know after my above tweet he will completely stop replying to my mails. Thats ok. For our collective good I am ready to accept that.

He got an offer to work under a reputed professor in US but the pay was lesser than what he is currently drawing in Germany. He has a wife and kids. So migrating to US on a lesser pay is not worth it even though he will get an elevated status. Lets hope he gets a good enough offer. But we will keep trying to put pressure on him to release the details. In the meantime lets try to raise his profile on social media and hope for the best.

 

[Badpack]

It all comes down to get your hands on SS31/Elamipretide or the other one i found recently P110/Mdivi-1. They both show very good and encouraging lab results. We just need them in human Cfs trail as soon as possible now. I was asking Dr. Prusty about Mdivi-1. He already tested it!

https://twitter.com/i/web/status/1240540820035559424

Lets hope its something in the pipeline for us.

 

[raghav]

It all comes down to get your hands on SS31/Elamipretide or the other one i found recently P110/Mdivi-1. They both show very good and encouraging lab results. We just need them in human Cfs trail as soon as possible now. I was asking Dr. Prusty about Mdivi-1. He already tested it!

https://twitter.com/i/web/status/1240540820035559424

Lets hope its something in the pipeline for us.

https://onlinelibrary.wiley.com/doi/abs/10.1002/ddr.21521

Ilexgenin A inhibits mitochondrial fission and promote Drp1 degradation by Nrf2‐induced PSMB5 in endothelial cells
Previous studies have demonstrated that Ilexgenin A (IA) obtained from Ilex hainanensis Merr. could improve AS development

Ilex hainanensis Merr. is used as a chinese herbal medicine.
Is this available in TCM shops ?

 

[MonkeyMan]

https://onlinelibrary.wiley.com/doi/abs/10.1002/ddr.21521

Ilexgenin A inhibits mitochondrial fission and promote Drp1 degradation by Nrf2‐induced PSMB5 in endothelial cells
Previous studies have demonstrated that Ilexgenin A (IA) obtained from Ilex hainanensis Merr. could improve AS development

Ilex hainanensis Merr. is used as a chinese herbal medicine.
Is this available in TCM shops ?

Not sure, Raghav, but Ilexgenin A is available from several sources:

https://www.emmx.com/ilexgenin-a.html

https://www.biocrick.com/Ilexgenin-A-BCC9233.html

http://www.tautobiotech.com/BRM/ePr...MIguOLxLK06AIVF26GCh0Hug1lEAMYASAAEgIEevD_BwE

 

[PhoenixDown]

and about 2% of the population has ME.

Where are you getting that figure from? There's no way that 2% of the population have real ME, it's fraudulent figures like that which trivialize ME.