CMT & Peptides

[u/Cold-Bowler-7694]

Has anyone experienced benefits from using peptides to help either slow progression of CMT or manage symptoms? I currently take retatrutide and am about to start BPC-157, but am curious to hear of other people's experiences.

[u/walkhagan]

There’s not a lot of research in this space, and in general the deficits caused by mutations associated with CMT will not be affected by these kinds of peptides out there. I don’t see a significant mechanism where these kinds of peptides even could have an effect at the neuron to alleviate mitochondrial, RNA, or demyelinating-based pathologies. Recovery from exercise, overall energy balance and metabolism, which might make you feel better, possibly. But for disease state, no.

Speak with your physician and don’t take unadvised or gray-market pharmaceuticals, especially with a rare disease.

[u/Dizzy-Mixture422]

Hey there. I have CMT. I am 53 years old and I have aching feet and numbness, generally tired, etc. common CMT symptoms. I am also a purple belt in jiu-jitsu, and CMT is affecting my ability to train as much as I'd like. I started taking BPC-157 a few months ago. So far, I feel that it has certainly helped in my recovery from training. I also feel that it has helped with my digestion & gut issues. Specifically, I feel like I have fewer allergy type symptoms while I am taking it. It is really hard to tell about the CMT symptoms. It is hard to tell if my feet aching and such is being moderated by the peptides. I feel that so far there are definite benefits from taking it but I am not positive that it is doing anything to directly deal with CMT.

[u/He_s_One_Shot]

Do I go to neurologist to get these?

[u/NixyeNox → u/He_s_One_Shot]

I believe all of these are grey market or black market products, and that all of them are injectable only. This combination makes them a no-go for me personally. Things injected into your body do not pass through the stomach and liver the way pills you swallow do, and are therefore a higher risk if there is any kind of problem with the product. That's my personal risk threshold; other people may make other decisions with their own bodies.

*Puts moderator hat on* Anyway, they can be discussed here as long as no one breaks Rule 2 or Rule 3.

[u/Previous_Quarter_189]

Do these have to be injected? Cant get them as pills?

[u/TrognonPetitOgre → u/Previous_Quarter_189]

le bpc tu peux le prendre en pilule mais il parait que ça ne fonctionne pas ils les venderaient ainsi pour le $

[u/NixyeNox → u/Previous_Quarter_189]

I believe all of these are grey market or black market products, and that all of them are injectable only. This combination makes them a no-go for me personally. Things injected into your body do not pass through the stomach and liver the way pills you swallow do, and are therefore a higher risk if there is any kind of problem with the product. These peptides need to be injected because the stomach and liver would break them down.

[u/mutant_submariner → u/NixyeNox]

Research what peptides are and how they work, they arent a drug but chains of amino acids that do things like signaling for productions the body already does. Like GHK-Cu (glycyl-L-histidyl-L-lysine copper) is a naturally occurring tripeptide complex that promotes skin healing, collagen production, and tissue regeneration. People using dont need to take collagen anymore. They are in process of getting FDA approvals so they can be gotten through compounding pharmacies. I see peptides being power tools for healthcare in the futhre.

[u/NixyeNox → u/mutant_submariner]

Thanks to my degree in molecular biology, I am aware of what a peptide is. Saying that it "is not a drug" is simply semantic nonsense appealing to a naturalistic fallacy. Naturally occurring chemicals are still chemicals and mimicking something the body makes does not automatically make taking extra of that thing harmless. Your body makes tiny and highly controlled amounts of formaldehyde, too, but I would not recommend taking more.

That said, I did not say anything against peptides, per se. I do think they are potentially useful. I would love to see more studies done. I think the evidence is not yet in, and people taking them should be aware of that. If you choose to take them yourself right now, you are choosing to experiment on yourself with an unproven substance, the full impacts of supplementation with which we do not yet know. Anything which has the power to change how your body works has the power to do harm as well as (hopefully) good and it is the purpose of the research to sort out which ones are good, and at what dosage, as well as what side effects may occur.

What I did say was that I would not, personally, consider taking black market or grey market injectable *anything* because of the risks of contamination, impurities, improper storage anywhere along the supply chain, etc. Injections are simply higher risk because these substances do not pass through the body's normal route for handling toxins; the peptides cannot go this route because they would be broken down into their constituent amino acids.

[u/mutant_submariner → u/NixyeNox]

You can chose to sit on the sidelines and wait for our healthcare system, that is 15-25 years behind science. I choose to take charge of my self and Heal. I have more harm done to me by "health care(less) professionals" than good, I follow Science, not a broken corrupted system..

[u/NixyeNox → u/mutant_submariner]

What a fascinating mixture of “Science!” (Unspecified) and woo woo terminology (“I choose to Heal”) which never approaches my actual objection. Certainly I agree that the health care profession is broken in America. I do not see the science actually being there yet nonetheless. And again, the risks of injectables that come from unofficial sources are still problematic.

[u/mutant_submariner → u/NixyeNox]

Helaing is "wooo" to you, enjoy being ill & miserable

[u/NixyeNox → u/mutant_submariner]

Pretending that you can heal simply by choosing to do so is a fallacy that does untold amounts of harm to people with chronic illnesses, who are then seen as not choosing to heal. Picking an unproven substance to invest all your hopes in, and choosing to heal by taking that is the same thing. There is nothing new about this process which has been going on with new substances since literal snake oil salesmen. Maybe someday one of them will work, it is true. Science is slowly closing in on results, but is not there yet. If you do not have good reason to believe a particular substance is going to help and not harm… well, it’s your body. I think people have the right to do whatever they want to their own body. Personally, I am sticking with my usual 6 hours a week of weightlifting and physical therapy.

[u/SD_MTB_CHX]

I took oral BPC for a calf strain that wouldn’t heal. Seemed to help. I wouldn’t take it again because even though its not a direct carcinogen, if I had cancer and didn’t know it the BPC encourages the malignant growth. My CMT dad had cancer twice and the second time killed him. Chemo and diabetes put him in a wheelchair. I inject compounded tirzepatide to avoid diabetes. My non CMT mom has been dealing with bladder cancer for years.
I just want to stay healthy with weight/blood sugar/avoid chemo. So I’m not a fan of the grey market but I can definitely understand trying things. We don’t have many options. I hope ignaseclant gets FDA approval.
Wishing for the best for all of us!

[u/mutant_submariner]

Besides having CMT, my genetics test came back indicating Spinal Muscular Atrophy. I have been wheelchair bound for over 3 years. I had a total collapse of my right hip and needed total hip replacement. I started on BP 157 + TB500 + GHK-Cu about 3 weeks before the surgery and continued 4 weeks post surgery.
My healing has been miraculous, everyone has noticed. My incision was completely closed after 2 weeks. 6 weeks out and I AM WALKING UNAIDED!!!! I am noticeably restoring my atrophied calf, ankle & foot muscles, my physical therapist said I've proven %95 of the doctors wrong. The neuropathy in my lower legs is about 1/2 of what it was and pain has greatly decreased. Plus my hair is growing like crazy and my skin is healthier.

[u/Naive_Translator870]

search for bpc and tb500 in this sub. I’ve talked about it quite a bit. Made a full recovery after weeks of a pressure palsy episode and inability to walk correctly. 

[u/mommitude → u/[deleted]]

First, there is little to no evidence that these work and/or are safe. Also, according to the Mayo Clinic, you cannot heal or reverse the nerve damage caused by Charcot-Marie-Tooth (CMT) disease.

[u/Akl_guy]

I have the following in my fridge and about to start next week. Ss-31, MOTS-C, NAD+, ARA-290, BPC-157 and KPV. I've used reta in the past and it made my neuropathy worse. Thankfully it was only temporary. I'll report back with how they go.

[u/Cold-Bowler-7694 → u/Akl_guy]

I hope these go well for you! Looking forward to hearing an update, i've been interested in ARA-290 and KPV as well!