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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Messages
60
This is a bit presumptuous. I myself have never been much of a "forum person", but yrs ago I found the PR forum and had to join.
I don't think it's presumptuous.

its still a set of people who all are on this forum.
I'm not assuming anything about all of us on here, simply that it's a specific population that possibly shares a set of characteristics.
 

sometexan84

Senior Member
Messages
1,229
not trying to attach anything negative to our peeps here folks.
just an observation.
I know you're not saying anything negative. I was just saying the observation might be incorrect

Like, you said ...
"this forum population is a specific type of people. ones that are on forums and such.
not generalizable perhaps."


I lean towards the population of PR forum being very general overall. It's likely that ME/CFS people that have always been super into chat forums, reddit, etc gravitated to this forum quicker than others w/ ME/CFS... but we all end up researching online looking for answers. If you stumble on PR forum in the process, there's a good chance you'll join, ask questions, and participate.

I think the population here is anyone w/ ME/CFS or LC that has an internet connection and knows how to use a search engine. I guess this might rule a out a small %
 
Messages
60
I know you're not saying anything negative. I was just saying the observation might be incorrect

Like, you said ...
"this forum population is a specific type of people. ones that are on forums and such.
not generalizable perhaps."


I lean towards the population of PR forum being very general overall. It's likely that ME/CFS people that have always been super into chat forums, reddit, etc gravitated to this forum quicker than others w/ ME/CFS... but we all end up researching online looking for answers. If you stumble on PR forum in the process, there's a good chance you'll join, ask questions, and participate.

I think the population here is anyone w/ ME/CFS or LC that has an internet connection and knows how to use a search engine. I guess this might rule a out a small %
hey I hear you, and understand where you're coming from.

I don't think "we all end up researching online" is accurate though. we all who are on here did and do, but I know others who actively avoid such things because they believe it harms.

I suspect its' different mindsets of such populations that could be important differences.

and that's the thing with measuring the absence of a thing, its much harder cause it's not there.
 
Messages
90
any folks tried the LL-37 peptide?

I was suggested I alternate it with Thymosin alpha 1 (which has helped me tremendously) but I'm a bit hesitant to take out something that has helped so much for an unknown.

thanks!
Yes, completely healed my 10 years worth of stomach problems. I did 6 weeks on, daily injections, 2 weeks off, then 6 weeks on again. Permanently healed me. Then my sister manifested all sorts of gut issues as well, put her on the same regimen, and she's completely healed as well
 

Cipher

Senior Member
Messages
806
Yes, completely healed my 10 years worth of stomach problems. I did 6 weeks on, daily injections, 2 weeks off, then 6 weeks on again. Permanently healed me. Then my sister manifested all sorts of gut issues as well, put her on the same regimen, and she's completely healed as well
What GI symptoms did you and your sister have? What dose did you use?
 
Messages
60
Yes, completely healed my 10 years worth of stomach problems. I did 6 weeks on, daily injections, 2 weeks off, then 6 weeks on again. Permanently healed me. Then my sister manifested all sorts of gut issues as well, put her on the same regimen, and she's completely healed as well
wow that's really amazing.

I took it for 4-5 days and it has tanked my health beyond any level I've yet felt.
seems like it really works for some and others have a terrible reaction.
 
Messages
90
What GI symptoms did you and your sister have? What dose did you use?
The agreed upon dosage by a number of researchers and peptide sellers was "100mcg of LL-37 injected subcutaneously twice a day (once in morning and once at night) for 4-6 weeks,"

But I did this dosage once a day for 6 weeks on, 2 weeks break, then 6 more weeks. Gut issues me and my sister both had were similar to IBS, heart burn symptoms, difficult to eat a variety of foods and would have all sorts of reaction, pains, nausea, and so on. Essentially, it was as if I had a super sensitive stomach that was never right and I was always scared on what I will eat and what sort of reactions I will get from what Im eating
 
Messages
90
wow that's really amazing.

I took it for 4-5 days and it has tanked my health beyond any level I've yet felt.
seems like it really works for some and others have a terrible reaction.
Wow im surprised this happened to you. I would still try again, but take extremely low dosages and slowly titrate up as you monitor reactions
 
Messages
60
Wow im surprised this happened to you. I would still try again, but take extremely low dosages and slowly titrate up as you monitor reactions

you would really try it again if it tanked your health to where you could barely get out of bed?
you may have more faith or something than i.

though I do think you're correct if I were to try again to start low and go slow.
 
Messages
90
you would really try it again if it tanked your health to where you could barely get out of bed?
you may have more faith or something than i.

though I do think you're correct if I were to try again to start low and go slow.
Yes, I would do it again, because I have had experiences with a variety of supplements, foods, vitamins, peptides and so on, that taking an entire normal dose wrecked me and gave me a crash. But then re-exploring those same substances I had tried and failed with before, and going about it in extremely lose doses and titrating back up, allowed me to experience a new found modality of having a variety of healing effects and detox effects from them.

For example, I used metformin to heal my Myelin sheath at low doses, where at higher doses I did not have good effects from it initially. Same thing when I did low dose 1 year long ABX therapy for mycoplasma, it game me a subtle and long healing effect and got rid of what was ailing me, as oppose to higher dosages of ABX gave me horrible effects.

Of course, each persons gut biome, blood type, Ph balance, what ails them, genetics, and on and on is different and unique, so it very well could be that LL-37 isnt for you. But for me and several others, it has been absolutely miraculous
 
Messages
60
Yes, I would do it again, because I have had experiences with a variety of supplements, foods, vitamins, peptides and so on, that taking an entire normal dose wrecked me and gave me a crash. But then re-exploring those same substances I had tried and failed with before, and going about it in extremely lose doses and titrating back up, allowed me to experience a new found modality of having a variety of healing effects and detox effects from them.

For example, I used metformin to heal my Myelin sheath at low doses, where at higher doses I did not have good effects from it initially. Same thing when I did low dose 1 year long ABX therapy for mycoplasma, it game me a subtle and long healing effect and got rid of what was ailing me, as oppose to higher dosages of ABX gave me horrible effects.

Of course, each persons gut biome, blood type, Ph balance, what ails them, genetics, and on and on is different and unique, so it very well could be that LL-37 isnt for you. But for me and several others, it has been absolutely miraculous
thank you for sharing. really appreciate you taking the time to elaborate on this.
I think im gonna do just that and try go slow (which is against my natural conditioning so a bit tough)

I really do think both TA1 and ll37 can be game changers cause I have "bad" bacteria overgrowth and fungal growth in my gut so this could be a huge improvement in my condition if I do find a way to go at it.


I'll probably even start at 50 mcg and stay there for a week before moving up or some such thing.

thanks again. and really happy it helped yo

how much over all improvement in your ME would you say came from LL-37?
 
Messages
90
thank you for sharing. really appreciate you taking the time to elaborate on this.
I think im gonna do just that and try go slow (which is against my natural conditioning so a bit tough)

I really do think both TA1 and ll37 can be game changers cause I have "bad" bacteria overgrowth and fungal growth in my gut so this could be a huge improvement in my condition if I do find a way to go at it.


I'll probably even start at 50 mcg and stay there for a week before moving up or some such thing.

thanks again. and really happy it helped yo

how much over all improvement in your ME would you say came from LL-37?
LL-37 was itself, a major revelation for my own path to healing and the use of Peptides, which I've barely scratched the surface on. I have had tremendous success with LL-37, GDF11, and BPC-157 has given me, and about 10 people in my own circle of friends and family, amazing healings from all sorts of issues. I even took BPC-157 orally and had various nootropic effects and gut healing effects as well. But of course, that brings me to your message, you mention bad bacteria overgrowth, so this is all has to be addressed in whatever numerous ways possible in order for you to start to experience the benefits of various peptides.

As for healing, I had a long journey of suffering, but eventually found out, after going through 30 useless idiot doctors, and finally an appointment with an immunologist, that I needed to avoid gluten at all cost (celiac) and that I had extremely high titers in blood test for Mycoplasma. Once I addressed the Mycoplasma with 1 year of low dose ABX (Dr Brownstein's Protocol) along with low dose daily Potassium iodide, then I got back to about 60-80% of my health back. It was then, that I could truly start using Peptides and feel their benefits, which I still use 2-3 times a week to this day, the BPC-157 and GDF11.

There are many others I want to try like for mitochondria, SS-31, and a KPV peptide which gives anti-inflammatory effects. But I will get to that point eventually, just been bust working full time since I got my health back
 

godlovesatrier

Senior Member
Messages
2,492
Location
United Kingdom
Very interesting @beatsmyth thanks. I'd read ll-37 was degraded extremely fast in the body but I'm figuring that must be wrong as it obviously had worked for a few people here.

Anyway you've made me realise it's worth trying. I totally rely on other peprides for asthma recovery and chest infection recovery. Kpv was a total game changer - all asthmatics should be taking it. It would save millions in steroid treatments.

Thanks for the info.
 
Messages
90
Very interesting @beatsmyth thanks. I'd read ll-37 was degraded extremely fast in the body but I'm figuring that must be wrong as it obviously had worked for a few people here.

Anyway you've made me realise it's worth trying. I totally rely on other peprides for asthma recovery and chest infection recovery. Kpv was a total game changer - all asthmatics should be taking it. It would save millions in steroid treatments.

Thanks for the info.
KPV is on my list to try as well. Unfortunately, I used to source from Purerawz, and I believe they are now under new ownership, and are now impossible to deal with or to receive anything from here in the states. Will never attempt again to deal with them, so now I'm trying to find a proper source for peptides
 
Messages
60
Yes, I would do it again, because I have had experiences with a variety of supplements, foods, vitamins, peptides and so on, that taking an entire normal dose wrecked me and gave me a crash. But then re-exploring those same substances I had tried and failed with before, and going about it in extremely lose doses and titrating back up, allowed me to experience a new found modality of having a variety of healing effects and detox effects from them.

For example, I used metformin to heal my Myelin sheath at low doses, where at higher doses I did not have good effects from it initially. Same thing when I did low dose 1 year long ABX therapy for mycoplasma, it game me a subtle and long healing effect and got rid of what was ailing me, as oppose to higher dosages of ABX gave me horrible effects.

Of course, each persons gut biome, blood type, Ph balance, what ails them, genetics, and on and on is different and unique, so it very well could be that LL-37 isnt for you. But for me and several others, it has been absolutely miraculous
hey again,

so you mentioned starting again with extremely low doses?
how extreme?

I've went down to like 10% of what my practitioner recommended and I'm still feeling totally wiped out by tb frag. ( I know not one you used at time of post, but they are all doing it)
 
Messages
90
hey again,

so you mentioned starting again with extremely low doses?
how extreme?

I've went down to like 10% of what my practitioner recommended and I'm still feeling totally wiped out by tb frag. ( I know not one you used at time of post, but they are all doing it)
10% of what you dosed before appears to be a good amount. If you are still having negative side effects, perhaps at the end of the day, this just isnt going to work no matter what due to the already pre-existing conditions associated with your current condition, which, if they were addressed first, would allow the peptide to work its magic, but is instead, just stirring up more inflammation.

I did a year of low dose antibiotics to address a mycoplasma infection causing the majority of my CFS (along with realizing I cant eat gluten), so I went in to my peptide usage having already addressed underlying issues. Several other people who have successfully used LL-37 to address and fully heal their gut issues, did not have CFS or Fibro issues to address first, like we do in this community.

Secondly, there is an additive that is used in some peptide manufactures called mannitol, as an additive which they say keeps the peptide in an appropriate matrix for it to reconstitute when the BAC water is added to it, but some people are saying the mannitol causes inflammatory response:

https://en.wikipedia.org/wiki/Mannitol

I never had any issues with this, but there is a Canadian peptide seller called CANLABS, and last time I purchased form him, he had mannitol free, peptides of various sorts, because of this exact reason.

in the end, all you can really do is try and see if it works for you. Best of luck
 
Messages
60
10% of what you dosed before appears to be a good amount. If you are still having negative side effects, perhaps at the end of the day, this just isnt going to work no matter what due to the already pre-existing conditions associated with your current condition, which, if they were addressed first, would allow the peptide to work its magic, but is instead, just stirring up more inflammation.

I did a year of low dose antibiotics to address a mycoplasma infection causing the majority of my CFS (along with realizing I cant eat gluten), so I went in to my peptide usage having already addressed underlying issues. Several other people who have successfully used LL-37 to address and fully heal their gut issues, did not have CFS or Fibro issues to address first, like we do in this community.

Secondly, there is an additive that is used in some peptide manufactures called mannitol, as an additive which they say keeps the peptide in an appropriate matrix for it to reconstitute when the BAC water is added to it, but some people are saying the mannitol causes inflammatory response:

https://en.wikipedia.org/wiki/Mannitol

I never had any issues with this, but there is a Canadian peptide seller called CANLABS, and last time I purchased form him, he had mannitol free, peptides of various sorts, because of this exact reason.

in the end, all you can really do is try and see if it works for you. Best of luck
thanks for the reply.
I use Canlabs as well as I thought It may be a mannitol issue.