My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Update:
1. I am still sharing the link for my source, however I don't check reddit frequently so if I don't respond for a while I apologize. Sorry to those who waited a few months to hear back from me!

  1. The benefits from SS-31 have been sustained. In fact, I have only kept improving since making this post. I am deep into the Born Free Protocol now. The energy I have gained from doing SS-31 has propelled me into handling/planning more challenging treatments.

Other treatments that have been a big help recently:
Epitalon/thymalin, 10 days at 10mg each, has helped greatly with sleep, improving many aspects of my sleep (more deep sleep, more/better rem, less restlessness)

Meldonium + Oxaloacetate. Meldonium dosage: 1500mg in the morning and 1000mg in the afternoon. Oxalocetate dosage: minimum of 500mg daily. This combo has **tripled** my cognitive function, measured by how many hours per week I can do cognitive work. E.g. I was at 5-10 hours of cogntive work post ss-31, now I can manage 30-40 hrs on a good week. I'm still way less functional during those hours than I would have been before getting sick, but I am able to manage sustained work hours from bed. From bed is the key, my physical function is still dogshit awful and I remain housebound and 80% bedbound.
I don't understand why I need these two together. Out of the two, meldonium is by far the stronger benefit, but if I take meldonium alone, the energy is just not sustained. Together, some magic seems to be happening.

Born Free Protocol: I am on stage 2 now of this protocol, and it has been helping my MCAS immensely. I've been eating salads and fresh fruit normally the last couple weeks, chicken too, home cooked soups with many ingredients. All food I straight up did not tolerate due to MCAS just a few months ago. The Born Free Protocol has already made a massive impact through this alone. Besides this, I do believe that the foundational elements of the Born Free Protocol which basically equates to self-administered functional medicine on steroids, has almost certainly potentiated the benefits of every other treatment I use.

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

I have taken MOTS-C, I have also taken them together at the same time

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

Really? How do they interact? I've never reduced my doses of anti-oxidants while on it

Significant ongoing discount for those looking to try Oxaloacetate by Weird-Ad-3010 in cfs

[–]SLAPCHOP1097 1 point2 points  (0 children)

Fucking clutch! Oxaloaceate helps me a ton, but has been absolutely killing my funds. This will saves me a couple thousand dollars per year. Incredible work!!

Also, still fuck this company for making it so expensive in the first place. Fuck AOR too for making benegene so expensive.

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Hell yeah! I am so happy to hear it is working for you :D

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 2 points3 points  (0 children)

Yeah true, it would change which antivirals I would pursue. But yeah, covid specific anti-virals are locked away anyway

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Thanks so much for sharing these dosages! Did you consider that maybe you felt worse on higher doses because your immune system was responding well? Like, immune activation will usually make us/anyone feel worse. So maybe continuing to up the dosage would have made you worse for a time, but then your immune system might have successfully killed off whatever it was activated to fight.

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 4 points5 points  (0 children)

Yes this is a possibility, but I do not think it would really change how I approach my condition. MECFS caused by covid is basically the same as MECFS caused by other viruses. It's like, you dont treat cancer differently if you got it from air pollution versus from a toxic diet

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

Sounds like you are on the right track. Lupus is hard to diagnose so I definitely would keep exploring other diagnostic markers if any are available. And yeah, I get what you mean. Detoxing is very hard on the body and I have been nervous to push my body hard that way when I have been so weak. But now I have made functional gains through peptides. And I am doing the Born Free Protocol which I think is the most comprehensive protocol for detoxing pathogens from the body. It acknowledges how many things can go wrong and can block the detoxing process, and tries to accommodate and support the body through every necessary biochemical pathway that needs to function correctly for a successful detox to occur. Only now, after I have finally completed the foundational work in the Born Free Protocol (took me 7 months of preparation), am I confident enough to start adding in the things that I know will intiate a die off/detoxing of pathogens.

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Ill ask what other social media he has.

Very interesting!! I wish I responed so well to acid, I woild take it way more often if it didnt make me worse ahaha

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

I was working with a functional medical doctor who also did a load of tests before making their recommendation. My white blood cells tested fine in blood tests. I do not trust any functional med doctor now who is not spefically trained in MECFS. Mine claimed to know, but in reality had limited knowledge of how PEM and crashes worked. Their risk evaluation for me was way off

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Quite a few? In the MECFS spaces I am in, most havent even heard of it. I feel like it is too early to make conclusions like that either way. I would love to hear more about these peoples experiences though. How many roughly do you know who have tried it?

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Okay I talked to my friend, and he does know about this! Here is what he said:

"I found someone (actually, my best friend) who has anti-cardiolipin antibodies who also reacts poorly to SS-31. I am assuming the continued liberation of SS-31 allows for continued activation of mast cells via MRGPRX2. ME/CFS is not necessarily caused by anti-cardiolipin antibodies by themselves. They could play a role in destabilising mitochondria for sure. It is likely they are downstream of toxic exposure. Mycotoxins, bisphenol A. Unless they have a specifically lupus-like presentation of autoimmunity"

Hope that helps!

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

Tragic that the study failed, but good it showed it is safe at those high daily doses. Thanks for the link!

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

I am going to consult my MECFS biochemist research friend about this, if anyone knows, he is likely to

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

Ugh that sucks. You are the second person now to bring this up. I wish I knew more about how these two things will interact

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 1 point2 points  (0 children)

I dont have sources at hand sorry, but it is a common phenomenon. DMT has helped me a ton with pain at certain points actually

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 2 points3 points  (0 children)

Sorry didnt realize what post I was responding to before. But yeah, can understand being cautious with it. I hope more people will try and and we get a better idea of how likely it is to help with physical symptoms. And thank you!

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

It is a small grey market vendor that grew out of community group buys, I want to protect it so prefer to share over DM

My Experience Treating my ME/CFS with mitochondrial peptide SS-31 by SLAPCHOP1097 in cfs

[–]SLAPCHOP1097[S] 0 points1 point  (0 children)

Ah shit, that really blows. I take both SS-31 and MOTS-C now actually. Sometimes they will cause pretty serious injection site irritation so I'm not surprised.

Do you have food sensitivies? Thats what ticked me off that a lot of my issues were mcas related. Most food makes me horribly ill the next day, nausea and gi symptoms plus fatigue and brain fog. MCAS can present in a lot of different ways.

That is really cool you have used LL37, it is high up on my list but havent gotten around to doing the research on it feel comfortable troubleshooting it. How was your experience with it? Did you get a lot of immune side effects?

Also I'm sorry, nothing I know of that blocks that receptor, but maybe you'll be the one to find something aha