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Peptides for Lyme Disease and co-infections

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RainyCloud
Veteran Member
Joined : Mar 2018
Posts : 2789
Posted 11/6/2021 11:56 AM (GMT -8)
Hi,

I've been meaning to make this thread for a while now. We have a thread on the Thymus gland where we ended up discussing the peptide Thymosin Alpha 1. However, there are more peptides that might be useful for Lyme disease and co-infections, so I thought it would be good to have it all in one place. The Thymus gland thread can be found by clicking here.

I'll try to share what I know in mostly my own words. But I'm not a doctor and nothing in this thread is medical advice or any type of advice for that matter. If I make any mistakes feel free to correct me. Also, one of our members dcd2103 knows a ton about peptides, so I hope he joins the discussion.

What is a peptide?
Peptides are simply short strings of amino acids. This might sound familiar because proteins are strings of amino acids too. The general difference is that proteins are usually 50 or more amino acids, and peptides are less than 50 amino acids.

How are peptide taken?
For the most part as an injection, although some can be taken orally and some can even be applied to the skin. The injections are right under the skin layer (subcutaneous). Also known as SubQ.

What are some well known peptides?
There are many many peptides, but I will list some of the more popular ones that people use and what they commonly use it for:

BPC-157: This is probably one of the most well-known peptides. It is known as the healing peptide. It is naturally found in human gastric juice. However, if you were to purchase BPC-157 as a consumer, it would be made in a lab. BPC-157 is often used for sport injuries and for GI-issues. I've read many accounts of people healing sport injuries very fast and even healing injuries that wouldn't heal (Including a close friend of mine who used it). It's great at healing things. It's one of the few peptides that has the option to be taken orally, if you don't like injections.

Thymosin Alpha 1: This is a peptide found naturally in the thymus gland. It has many effects on the immune system, such as modulating the immune system and stimulating parts of it. More specifically it: "increases T cell-mediated immune responses by several mechanisms, including stimulation of T cell differentiation and/or maturation, activation of natural killer cells and dendritic cells, and stimulation of proinflammatory cytokine release". I have used this peptide myself with good results, as you can read about in the Thymus thread linked above.

LL-37: I am just starting to learn about this one so bear with me. This is an antimicrobial peptides (also known as an AMP). With the increase of antibiotics resistance, this peptide has been the target of a lot of research as a possible solution or adjunct to solving that problem. There is a lot of research on LL-37 destroying biofilms, so that makes it of interest to Lyme patients in addition to it having antimicrobial effect against Lyme Disease itself. I've been reading reviews for the peptide from people with Lyme and the results are mixed. Some notice strong herxes and some notice nothing. I might try this peptide at one point myself.

MOTS-c: This peptide is also found in the human body. It is expressed by a mitochondrial gene. It regulates metabolic functions throughout the body. One of it's functions is turning glucose into usable energy. So it can be helpful for people with low energy. Which many people have in the Lyme world. It may also improve insulin sensitivity. It also activates AMPK in mice. There is research that says when AMPK is activated it may promote health in several ways. Such as heart health, can help with diabetes and more. I think a forum member here tried it but I forgot who it was (I apologize).

More peptides
There are more peptides that might be of interest and we can explore them as the thread goes on. Examples are:
- KPV
- Thymosin Beta 4
- Cerebrolysin (a neuropeptide)
- DSIP (for sleep)
- Thymulin (not the same as TA-1)
- And more...

Who are some of the Lyme doctor's that incorporate peptides?
This is a tough question because I don't know every Lyme doctor. There is a doctor by the name of Dr. KH who is really into peptides. And I know Dr. MR is looking into peptides after the recent 2021 ILADS conference. I'm sure there are many more though. Dr. KH actually has a really helpful PDF that includes peptides which can be found by clicking here.

How can I get peptides?
So I can't give any advice here for legal reasons, but what I can say is what I've observed when it comes to this topic. Which is that most Lyme patients probably get them through their doctor. Which means that they come from a compounding pharmacy.
However, I've also observed many places online where you can just buy them. Which is what I personally do. Again, I am not recommending this, I'm just saying that this is what I personally do. These are not real pharmacies so it comes with a risk.

Where can I read more about peptides?

  • There was a company called Taylor Made Compounding. I'm not sure if they are still around because if I recall correctly they got in legal trouble. But they had an amazing catalog that describes most peptides. It can be found here: https://web.archive.org/web/20210204152217/https://imcwc.com/wp-content/uploads/2019/08/peptide-catalog.pdf
  • PDF from Dr. KH as linked above: https://restorativemedicine.org/wp-content/uploads/2017/01/4holtorf_-lyme-cfs.pdf
  • Another peptide company with lot's of info about peptides: https://www.peptidesciences.com
  • Dr. MR on BPC-157: https://www.treatlyme.net/guide/fresh-ideas-from-2021-ilads
  • Cerebrolysin official website: https://www.cerebrolysin.com/

As this thread goes on I'm sure there will be more links to be shared.
Take care everyone!
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Bailey
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Posted 11/6/2021 1:43 PM (GMT -8)
Thanks Rainy! I’m very interested in this. I believe my newer doctor also uses peptides, I’m not sure how and they have not prescribed them to me at this point. My peptide using doctor is Dr G.

Post Edited (Bailey) : 11/7/2021 8:50:25 AM (GMT-7)

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RainyCloud
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Posted 11/6/2021 3:24 PM (GMT -8)
Thank you Bailey 🙂, it might be worth asking what your Dr. thinks about adding it to your treatment ! I've had success with Thymosin Alpha 1 and am most likely going to try LL-37. No side effects either, which is always great 🙂.
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Bailey
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Posts : 789
Posted 11/6/2021 4:01 PM (GMT -8)
Yeah I will but my doctor has lived up to my hopes in some respects and seems to be more knowledgeable than previous practitioners and had a number of new treatment ideas without my prompting. It’s refreshing, also a bit scary but I think good so far. I will ask about them if they run out of ideas I’m comfortable with 😜
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ChickNorris
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Joined : Jan 2012
Posts : 699
Posted 11/6/2021 4:44 PM (GMT -8)
I have used MOTS-C, BPC-157, and Thymus Alpha.
BPC healed a stubborn tendon injury, I had partially torn my tricep tendon and my arm froze at around 90 degrees. BPC softened up the fibrotic tendon and helped me regain full range of motion.
MOTS-C was the real miracle worker for me. I used it after finishing up disulfiram, in remission but struggling with chronic fatigue. It reset my energy levels to that of a functioning, healthy, normal person. I did it back in February, I’m still able to workout without crashing (Cardio). I feel like I could do another course of it maybe once a year just to keep things running smoothly.
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Garzie
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Posted 11/7/2021 3:13 AM (GMT -8)
thanks for pulling this together Rainy

i don't think i can cope with adding anything more to my already pretty massive protocol right now - but i am interested in this whole peptide therapy area so will do some reading into the link provided

one thing that would be of interest to me and possibly others is which ones have to be injected and which seem to work if taken orally - i note that Dr MR was using BPC-157 in oral form - so it seems some at least are useable that way

the other thing that would be really useful and interesting to see from those who post their experiences is some idea of the degree of benefit found from the various trials people are doing - ie some kind of quantified scale - eg "my energy went from 20% of normal function to around 70% "

ChickNorris - that MOTS-C sounds really interesting - dramatic fatigue has been my most debilitating symptoms throughout - and i am only now v gradually building up some exercise tolerance - but anything aerobic - even running 100yards - can set me back days - so something that increases aerobic tolerance is a biggie
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RainyCloud
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Joined : Mar 2018
Posts : 2789
Posted 11/7/2021 4:39 AM (GMT -8)
Bailey: I'm so happy you found a doctor that lived up to your hopes. That must be comforting knowing that you're in good hands. Please let us know how it continues to go!

ChickNorris: Thank you for posting your experience. It was you who I was thinking about in regards to the MOTS-c. But I had forgotten your username. I've also been meaning to thank you for sharing your story about MOTS-c previously with me. It inspired me to try it and I'm currently in the process of purchasing it. Just like Garzie, my primary symptom is fatigue, so your story is really inspiring.

Garzie: Those are such great ideas. In fact, let me start right now by making a list of routes of administration. I always appreciate how you quantify process and think that will also be really helpful for us to do as this thread goes on. I'm so sorry that dramatic fatigue has been your most debilitating symptom. It's actually, as you know, mine too. So I really feel for you. I'm so glad you have made progress and I hope you will continue to do so.

So here is a (still incomplete) list I just made, of possible routes of administration for peptides:

(also I forgot to mention in my original post that there are peptides that can be taken as a nasal spray, so I will include those too)

Oral:

BPC-157
DNF-10
KPV
Cerebrolysin
Thymosin Beta 4

Nasal Spray:

MOTS-c
Semax
Selank
N-Acetyl-Selank
N-Acetyl-Semax
Thymosin Beta-500
VIP Acetate
BPC 157

Injection:

MOTS-C
LL-37
BPC-157
Thymosin Alpha 1
Thymosin Beta-500
Thymosin Beta-4
GKC-Cu
Selank
Semax
Cerebrolysin
ARA-290
AOD-9604
GHK-Cu
KPV
DSIP
Thymulin

Topical

GHK-Cu
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RainyCloud
Veteran Member
Joined : Mar 2018
Posts : 2789
Posted 11/21/2021 6:55 PM (GMT -8)
So someone on a different forum went out of his way to get his hands on one of the very few, if not the only, human study of BPC-157.

So I'm just here passing it along.

It's rectally administered though in the study, I've never heard of that before with peptides, but I guess it works.

If you're interested in BPC-157 I would save this document, because from what I understand it was extremely hard to get a hold of:

https://docdro.id/tkfrz7x
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Garzie
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Posted 11/22/2021 2:35 AM (GMT -8)
do we know the reason there are no headers, authors, document refs, publications, etc for this paper Rainy?

seems a bit odd as the purpose of papers is supposed to be open distribution of info such that other researchers can validate and duplicate the findings...
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dcd2103
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Joined : Nov 2019
Posts : 2385
Posted 11/22/2021 4:01 AM (GMT -8)
interesting, will read this rainy.

I plan on starting ARA-290 in addition to IVIG for my nerve pain. I have a friend on ARA-290 who claims that the combo of his IVIG+ARA got his nerve pain down to a 1/10 from a 9/10, but if he stops the ARA it climbs to a 4/10.

I've seen some studies on it for sarcoidosis induced small fiber neuropathy which were very optimistic
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RainyCloud
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Joined : Mar 2018
Posts : 2789
Posted 11/22/2021 4:35 AM (GMT -8)
Hi guys,

I'm not sure why Garzie, it's just how it was provided to me, it's a bit odd indeed.

But I do think I just found all of that information:

https://www.bib.irb.hr/120878

dcd2103 that's so great, I truly hope it goes well for you. That's really impressive about the results of your friend!
Please do let us know how it goes!
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RainyCloud
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Joined : Mar 2018
Posts : 2789
Posted 12/21/2021 4:51 AM (GMT -8)
Hi ChickNorris,

I am really interested to know what dosage of MOTS-c you took and the schedule/how often you took it.
It would really help me a lot to know because the dosing seems to be different on every website.
Did it help you right away or did you take it for a while before it helped you?

Thank you so much!!

Hope to hear from you soon!
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dcd2103
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Joined : Nov 2019
Posts : 2385
Posted 12/21/2021 12:21 PM (GMT -8)
Can you update us on your peptide trials rainy? Which ones you’re taking and if they helped?


I will be trying exosomes soon. Not exactly a peptide therapy but I’ve noticed drs and patients who use or explore one often do the other.

Looking like it’s gonna run me several thousand dollars. Not cheap, and it’s hit or miss, but I’ve met a few people who credit exosomes w their permanent or temporary remission.
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WalkingbyFaith
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Joined : Aug 2017
Posts : 7747
Posted 12/21/2021 1:56 PM (GMT -8)
Thank you, Rainy, for making that list, and to everyone who contributed to this thread. This is one of the treatments I am keeping in mind. It sounds much easier to tolerate and more effective than antimicrobial treatment. I hope I remember to ask my doc about peptides at my next appointment.

I noticed VIP acetate on the list. I assume that Vasoactive Intestinal Polypeptide. That is the final treatment in the Shoemaker protocol for CIRS, for those who remain symptomatic after following the protocol up to that point. It’s supposed to raise MSH (melanocyte stimulating hormone), which is chronically low in CIRS. It’s supposed to “reset” the aberrant inflammatory immune response. I hear it hasn’t been the expected miracle for everyone who has taken it.

Not sure if this is the same form that the CIRS docs use or not. I have no experience with it.

How do you determine which peptides you should use? Are there any dangers with using them? Honestly, I can’t really wrap my head around what peptides are and why they help.

If they really help with symptoms, are the benefits permanent, or do they only help while you’re taking them?
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WalkingbyFaith
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Joined : Aug 2017
Posts : 7747
Posted 12/21/2021 2:13 PM (GMT -8)
Holy crap, this stuff’s expensive!!! $120 for 60 capsules. That’s a 30 day supply. How long do you need to treat with this?
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RainyCloud
Veteran Member
Joined : Mar 2018
Posts : 2789
Posted 12/21/2021 2:48 PM (GMT -8)

dcd2103 said...
Can you update us on your peptide trials rainy? Which ones you’re taking and if they helped?

I will be trying exosomes soon. Not exactly a peptide therapy but I’ve noticed drs and patients who use or explore one often do the other.

Looking like it’s gonna run me several thousand dollars. Not cheap, and it’s hit or miss, but I’ve met a few people who credit exosomes w their permanent or temporary remission.

Hi dcd!

Thank you so much for asking. I've currently only taken TA-1 and am waiting for my MOTS-C to arrive (might take a while as it's from abroad).

With the TA-1 I've gone through about 3 vials, so about 21 injections. The TA-1 really shined for me with turning down the heat in the literal sense. I was profusely sweating in the summer to the point where I just drenched all the time. This never happened to me until I got Lyme + co-infections. Not even remotely, so I know it's caused by the infections. TA-1 basically just stopped that in it's track almost completely. It was quite amazing. Now it's winter so it's harder to notice and I haven't been using it lately.

I've done a lot of thinking about why it worked, and to be honest I don't have a definite answer but I think the sweating might be some kind of immune reaction. Which in turn might be why the TA-1 made such a big difference, as it modulates the immune system.

Another thing in my current plan is to take TA-1 after I'm (hopefully) done treating one day. Garzie posted a really interesting thread about antibiotics hiding in the spleen and I recently posted a lot of information in there about TA-1, see here: https://www.healingwell.com/community/default.aspx?f=30&m=4275973

After reading that thread and the study, I don't want to risk something like that happening to me, after I finish up treatment one day. Meaning, I'm terrified that somewhere in my body the bacteria will slowly start beginning to replicate again. Granted, this will always happen to some extend but I feel like if I take TA-1 for let's say 3 months or so after treatment, possibly it will:

- Keep my immune system in good shape and maybe even "train it" to stay that way.
- Boost my immune system to kill the bacteria hiding in places like the spleen, through mechanisms such as boosting neutrophils and/or their function (see Garzie's thread).

Sorry I wish I had more peptide experience to share at this point, but it's been hard to get a hold of the peptides I want to use, up until recently.

I've also looked into using LL-37 for it's antimicrobial effects, and was planning on using it, however, I have since changed my mind as I was a bit concerned after seeing some of these studies:

https://www.karger.com/article/fulltext/490183
https://www.thno.org/v09p2209.htm

The strange thing is that it's actually used sometimes to fight cancer too, in fact the first study mentions this:

"These investigations indicate that LL-37 can either be pro-tumorigenic or an anti-cancer agent for different cancers. Currently, it is difficult to fully understand the molecular basis for LL-37 effects in different cellular settings. However, available data indicate that LL-37 can act as a ligand for various membrane receptors thus explaining its tissue-specific effects in different cancers."

The thing is that many things can cause cancer but with the limited knowledge on human use of LL-37 as a peptide, I just rather not take the risk.

Now MOTS-C on the other hand, I don't see anything concerning like that about it online, so I'm looking forward to trying it. Another thing I've learned is that MOTS-C doesn't cross into the brain, so that's very reassuring as that's always a concern of mine.

I've heard some really good things about exosomes and I've also noticed that they are indeed often offered by the same clinics who offer peptides. I would be really interested to hear how that goes for you! Do you, in a strange way, look forward to it in the sense that it might provide healing? I feel like some of these things can sometimes offer hope. My heart goes out to you, I know you're in a lot of pain all the time.

Did you end up trying the ARA-290 or are you going to wait for now?

Hope it goes really well for you and please keep us posted!
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RainyCloud
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Joined : Mar 2018
Posts : 2789
Posted 12/21/2021 2:50 PM (GMT -8)
Hi WBF, you're welcome, I'm glad you got something out of it 🙂 I'm looking into VIP for you right now, will update once I learn a bit more. Many peptides don't have to be taken continuously. It's often periods like several weeks at a time with breaks. I will post more in a bit.
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dcd2103
Veteran Member
Joined : Nov 2019
Posts : 2385
Posted 12/22/2021 3:08 AM (GMT -8)
Hi dcd!

Thank you so much for asking. I've currently only taken TA-1 and am waiting for my MOTS-C to arrive (might take a while as it's from abroad).

With the TA-1 I've gone through about 3 vials, so about 21 injections. The TA-1 really shined for me with turning down the heat in the literal sense. I was profusely sweating in the summer to the point where I just drenched all the time. This never happened to me until I got Lyme + co-infections. Not even remotely, so I know it's caused by the infections. TA-1 basically just stopped that in it's track almost completely. It was quite amazing. Now it's winter so it's harder to notice and I haven't been using it lately.

I've done a lot of thinking about why it worked, and to be honest I don't have a definite answer but I think the sweating might be some kind of immune reaction. Which in turn might be why the TA-1 made such a big difference, as it modulates the immune system.

Another thing in my current plan is to take TA-1 after I'm (hopefully) done treating one day. Garzie posted a really interesting thread about antibiotics hiding in the spleen and I recently posted a lot of information in there about TA-1, see here: https://www.healingwell.com/community/default.aspx?f=30&m=4275973

After reading that thread and the study, I don't want to risk something like that happening to me, after I finish up treatment one day. Meaning, I'm terrified that somewhere in my body the bacteria will slowly start beginning to replicate again. Granted, this will always happen to some extend but I feel like if I take TA-1 for let's say 3 months or so after treatment, possibly it will:

- Keep my immune system in good shape and maybe even "train it" to stay that way.
- Boost my immune system to kill the bacteria hiding in places like the spleen, through mechanisms such as boosting neutrophils and/or their function (see Garzie's thread).

Sorry I wish I had more peptide experience to share at this point, but it's been hard to get a hold of the peptides I want to use, up until recently.

I've also looked into using LL-37 for it's antimicrobial effects, and was planning on using it, however, I have since changed my mind as I was a bit concerned after seeing some of these studies:

https://www.karger.com/article/fulltext/490183
https://www.thno.org/v09p2209.htm

The strange thing is that it's actually used sometimes to fight cancer too, in fact the first study mentions this:

"These investigations indicate that LL-37 can either be pro-tumorigenic or an anti-cancer agent for different cancers. Currently, it is difficult to fully understand the molecular basis for LL-37 effects in different cellular settings. However, available data indicate that LL-37 can act as a ligand for various membrane receptors thus explaining its tissue-specific effects in different cancers."

The thing is that many things can cause cancer but with the limited knowledge on human use of LL-37 as a peptide, I just rather not take the risk.

Now MOTS-C on the other hand, I don't see anything concerning like that about it online, so I'm looking forward to trying it. Another thing I've learned is that MOTS-C doesn't cross into the brain, so that's very reassuring as that's always a concern of mine.

I've heard some really good things about exosomes and I've also noticed that they are indeed often offered by the same clinics who offer peptides. I would be really interested to hear how that goes for you! Do you, in a strange way, look forward to it in the sense that it might provide healing? I feel like some of these things can sometimes offer hope. My heart goes out to you, I know you're in a lot of pain all the time.

Did you end up trying the ARA-290 or are you going to wait for now?

Hope it goes really well for you and please keep us posted!

Thank you for the info on TA-1. This sounds very promising and is definitely going down on my list of things to try.

I havent started the ARA-290 yet. This psoriatic arthritis, or whatever arthritis it is, is so darn sensitive that I have to be very careful and try things very slowly. I do plan on getting back on it though.

I didnt realize that the FDA is cracking down on exosomes. Apparently they've been going after some practioners who are using them.

I'm so sick of these f'ing scumbags! Anything that helps, cant have that.
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RainyCloud
Veteran Member
Joined : Mar 2018
Posts : 2789
Posted 12/22/2021 8:43 AM (GMT -8)

dcd2103 said...

Thank you for the info on TA-1. This sounds very promising and is definitely going down on my list of things to try.

I havent started the ARA-290 yet. This psoriatic arthritis, or whatever arthritis it is, is so darn sensitive that I have to be very careful and try things very slowly. I do plan on getting back on it though.

I didnt realize that the FDA is cracking down on exosomes. Apparently they've been going after some practioners who are using them.

I'm so sick of these f'ing scumbags! Anything that helps, cant have that.

Hi dcd,

Yes makes sense to take it slow with the arthritis, I hope you find some relief soon!

This is the first time I heard about the FDA cracking down on exosomes. It doesn't surprise me with the FDA's track record.
It's really disturbing and I share your frustration with the FDA.
Just the last 2 years alone, they've gone after NAC, Piracetam, Ivermectin, TA-1, Exosomes,... the list goes on.
Not to mention them cracking down even more now on affordable offshore meds.
But they look the other way when big pharma is trying to make their money...

Here's the part about the TA-1 by the way:

"Thymosin-alpha 1 is not a component of an approved drug, and thymosin does not meet the conditions for compounding under sections 503A and 503B of the FD&C Act. FDA will take appropriate action against compounders that produce thymosin. The agency is aware of drug products containing thymosin being offered to patients for the treatment of COVID-19. However, thymosin is not approved to treat any condition, including COVID-19."

blah blah blah.......... they are a bunch of hypocrites.
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RainyCloud
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Joined : Mar 2018
Posts : 2789
Posted 1/19/2022 5:01 AM (GMT -8)
Hi guys 🙂,

I just did my very first MOTS-c injection about 10 minutes ago.
So excited.

- Rainy
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dcd2103
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Joined : Nov 2019
Posts : 2385
Posted 1/19/2022 7:35 AM (GMT -8)
very curious to hear how you do! It looks like this puppy is good for mitocondrial health? Why'd you choose this one in particular? Keep us posted!
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running wild
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Joined : Mar 2013
Posts : 2188
Posted 1/19/2022 8:54 AM (GMT -8)
Same as dcd - will be looking forward to seeing how you do with it, Rainy. Guess we better try things while it is still allowed.
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Bailey
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Joined : May 2021
Posts : 789
Posted 1/19/2022 9:37 AM (GMT -8)
Do you guys know the side effects of bpc 157? I have some cream of it in my fridge, but I’m semi starving right now because of mcas and am worried it might make me starve more.

I’m trying to decide which things my doc suggested I should try first. I was leaning toward luteolin, but the more I read the more I think it might make my estrogen issues worse, and I’m in a bad part of my cycle for estrogen issues. So bpc 157 or new digestive enzymes boosting probiotics are my choices. I’d prefer not to break biofilm seeing as I’m also having lots of relapse issue at present.
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The Dude Abides
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Joined : May 2017
Posts : 2636
Posted 1/19/2022 11:14 AM (GMT -8)
Good luck, Rainy! My fingers are crossed that it really moves the needle for you!
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dcd2103
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Joined : Nov 2019
Posts : 2385
Posted 1/19/2022 12:01 PM (GMT -8)

Bailey said...
Do you guys know the side effects of bpc 157? I have some cream of it in my fridge, but I’m semi starving right now because of mcas and am worried it might make me starve more.

I’m trying to decide which things my doc suggested I should try first. I was leaning toward luteolin, but the more I read the more I think it might make my estrogen issues worse, and I’m in a bad part of my cycle for estrogen issues. So bpc 157 or new digestive enzymes boosting probiotics are my choices. I’d prefer not to break biofilm seeing as I’m also having lots of relapse issue at present.

I havent heard of too many side effects, maybe some lethargy, but one thing i have seen a few posts about is people reporting anhedonia as a rare but potentially rough side effect. I'd snoop around reddit and the peptides FB group and read past experiences. I may recall some people reporting histamine like side effect too. I'd start very slowly at first if you go that route, which I believe is smart w/ any peptide
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