ME/CFS patient goes into remission after taking "elixir of youth" GDF11

[Learner1]

Er, would GDF promote cancer? Seems likely if could...could be risky for those over 40 or 50...

I've been on LL-37 for 6 weeks. Hasn't fine anything, good or bad. I have more faith in the thymosin alpha I'm also taking for protection against COVID.

I highly doubt any of these are a cure. I don't like any of your scales @Hip as I've never found the definitions apply to me well, but have improved from about 40% of normal function to about 95% doing a long list of other things. Repairing my mitochondria, treating infections and supporting my immune system have equally helped.

 

[Hip]

Er, would GDF promote cancer?

That was one of my thoughts when I first read about GDF11. There has not been enough research on GDF11 to determine what adverse effects it might have, and human trials have not yet taken place, so it's uncharted territory.

Table 1 of this study indicates that GDF11 suppresses tumor growth in the case of some cancers (like breast), but promotes tumor growth in the case of others (like colorectal).

I don't like any of your scales @Hip as I've never found the definitions apply to me well,

I've found ME/CFS patients don't seem to have trouble in relating to the mild, moderate, severe scale of ME/CFS, which is the one used by the ICC and medical authorities like the NHS.

 

[Learner1]

The cancer risk sounds dangerous.

I was diagnosed with ME/CFS by a top specialist.

The issue with the scales is if you take the definitions for mild, moderate, it severe, they are not the same at all. There is also too much emphasis on very severe, severe, and moderate, then grouping mild into an extremely broad range of functionality.

And, they have nothing to do with the status of anyone's immune system, endocrine system, mitochondrial function of biochemistry.

It's like judging the quality of the contrail of a jet airplane, without any judgement of how well the engine is working.

 

[Hip]

The issue with the scales is if you take the definitions for mild, moderate, it severe, they are not the same at all. There is also too much emphasis on very severe, severe, and moderate, then grouping mild into an extremely broad range of functionality.

If you are interested in discussing the pros and cons of the various ME/CFS scales, I'd suggest starting a thread on it. As for the status of immune system, endocrine system and mitochondrial functioning, we know next to nothing about these in ME/CFS, so nothing can be reliably said.

I was diagnosed with ME/CFS by a top specialist.

I am just pointing out that with all the ME/CFS patients on this forum, when I ask them where they fit on the mild, moderate and severe scale, they have no trouble in telling me. Except in your case, where you say you do not fit into that scale.

 

[Learner1]

If you are interested in discussing the pros and cons of the various ME/CFS scales, I'd suggest starting a thread on it.

I'm really not. They're pseudoscience.

As for the status of immune system, endocrine system and mitochondrial functioning, we know next to nothing about these in ME/CFS, so nothing can be reliably said.

Oh, actually, there is quite a lot of research on all of these areas in ME/CFS. We actually know quite a lot.

I can't say what happens with functional medicine there in the UK, but where I live, functional medicine MDs, ARNPs, NDs, DCs, and DOs use very standard national label tests as well as done well regarded specialty labs to determine what is wrong and to decide a treatment plan. In fact, I have provided you a good deal if scientific information about this.

This is an overview of functional medicine, which is systems-oriented personalized medicine as described here, which looks into identifying and treating root causes of chronic diseases, including ME/CFS:

https://usermanual.wiki/Document/IFMWhitepaper21stCenturyMedicine.279979973.

I am just pointing out that with all the ME/CFS patients on this forum, when I ask them where they fit on the mild, moderate and severe scale, they have no trouble in telling me.

These descriptions are not the same - they day the people may work, may not work or don't work, that they are independent, dependent, and housebound or not housebound., have reduced mobility, but can do chores, or not..

Those with moderate ME/CFS are generally not able to work, probably don't leave the house much, have to perform domestic chores slowly with breaks and rests, and may need 1 or 2 hour's naps in the middle of day.

People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

Moderate – you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.

Moderate: the patient has reduced mobility and is restricted in all activities of daily living. They have usually stopped work or education. There is poor sleep quality and duration.

Moderate – the person is mostly housebound

70 — Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 — Disabled; dependent. Requires occasional assistance; cares for most needs

At my worst, I was totally brain fogged, slept 16 hours a day, had disturbed sleep at night, cooked dinner half the time, did no other housework, did a job from home or the doctors office on a computer 5 hours a week, and exercised in 1-2 minute increments, and needed significant help with moving and doing anything, and spent most of the time at home and a lot of time on the floor, pavement, grass, or whatever surface covered the ground, napping or resting wherever I happened to collapse. I had immunodeficiciency, 7 infections, 4 autoimmune problems, adrenal insufficiency, thyroid and other hormone dysfunction, half of normal mito content, mito complex I operating at 31% of normal, and had significant arsenic and mold toxicity. I don't know which category above best fits, but I don't think it was mild.

And today, though I'm 95% better, none of your definitions for mild fit at all, even though I'm not cured, still have some pretty abnormal lab values, do an extraordinary amount to support my high level of function, and can still trigger PEM with a certain level of exertion.

So, I find those scales pretty darn useless.

 

[Lieselotte]

That's incredible! So would you say that after 3 months, the combo of BPC-157 and LL-37 has taken you from severe to mild, on the ME/CFS scale of: very severe, severe, moderate, mild, remission?

What actual doses of these products were you taking during the 3 month period? And do you find that you have to keep taking them to prevent the ME/CFS symptoms returning? Or has their beneficial effect been semi-permanent?

Would you happen to know which pathogens your ME/CFS is associated with (eg, coxsackievirus B, echovirus, Epstein-Barr virus, cytomegalovirus, HHV-6, etc)?

@beatsmyth I'd also like to know the dosing and how long you took the LL-37.

I've been eyeing it, but there are some folks on a peptide Facebook group that found it quite strong and they had bad reactions to it. I had no gut help from BPC-157 so still looking for anything that might help with that.
So now you've got me back to looking into LL-37!

 

[andyguitar]

I can't say what happens with functional medicine there in the UK, but where I live, functional medicine MDs, ARNPs, NDs, DCs, and DOs use very standard national label tests as well as done well regarded specialty labs to determine what is wrong and to decide a treatment plan. In fact, I have provided you a good deal if scientific information about this

The problem in the UK @Learner1 is that our NHS wont do much in the way of testing and most patients here can't afford private medicine. So they are a bit stuffed.

 

[Learner1]

The problem in the UK @Learner1 is that our NHS wont do much in the way of testing and most patients here can't afford private medicine. So they are a bit stuffed.

Right. Not much is free here. We pay for everything.

 

[minimus]

Does anyone worry about potential infection risk from injecting these peptides, where you cannot be 100% certain what's in the vial, let alone that it is sterile? Or are subcutaneous injections "reasonably" safe, at least compared to IV-administered injections/infusions? Does mixing BPC11 or any other peptide with bacteriostatic water prior to injection make the combined solution sterile?

One reason I ask is that Tailor Made Compounding, a pharmacy with an imprimatur of safety because it requires a prescription from a physician to dispense peptides, was the target of a warning letter on April 1st from the FDA. The FDA letter says that "investigators noted serious deficiencies in your practices for producing sterile drug products, which put patients at risk." (letter attached)

 

[Hip]

Does anyone worry about potential infection risk from injecting these peptides, where you cannot be 100% certain what's in the vial, let alone that it is sterile?

There are dozens of companies online which sell these peptides, proteins and hormones, and it is typically body-builders which use them most. I've not come across any stories of the products not being sterile. However, these products are always sold as not for human consumption, as that's the legal loophole which allows them to be sold.

Does mixing BPC11 or any other peptide with bacteriostatic water prior to injection make the combined solution sterile?

The peptides and bacteriostatic water solution are no longer fully sterile once you insert the hypodermic needle through the rubber stopper of the bottle, as this will introduce tiny amounts of bacteria present in the air.

However, because bacteriostatic water contains an antibacterial substance (benzyl alcohol) which reduces the growth of bacteria, a bottle of bacteriostatic water with some peptide or protein dissolved in it will be safe to inject for 28 days, according to the bacteriostatic water manufacturer, if it is kept in the fridge.

 

[Learner1]

Does anyone worry about potential infection risk from injecting these peptides, where you cannot be 100% certain what's in the vial, let alone that it is sterile? Or are subcutaneous injections "reasonably" safe, at least compared to IV-administered injections/infusions? Does mixing BPC11 or any other peptide with bacteriostatic water prior to injection make the combined solution sterile?

One reason I ask is that Tailor Made Compounding, a pharmacy with an imprimatur of safety because it requires a prescription from a physician to dispense peptides, was the target of a warning letter on April 1st from the FDA. The FDA letter says that "investigators noted serious deficiencies in your practices for producing sterile drug products, which put patients at risk." (letter attached)

I actually had an order held up from Tailor Made because the FDA dropped by a couple days after my order went in. From what I understand, there was some confusion as a veterinary compounder had been at that address, and they were the actual target of the FDAs concern. I was assured that the FDA came and went without a problem, and my order was shipped a couple days later as promised. As I've heard numerous horror stories of the FDA raiding pharmacies and doctor's offices and confiscating everything, it seems like there wasn't a big problem in this case. I have another shipment in the mail right now that went through promptly.

From what I've seen, there are risks of contamination from FDA approved drugs made in factories all over the world, from supplement manufacturers and compounding pharmacies alike. All have had specific episodes where people broke the laws. That's why, wherever possible, I try to buy from sources with high standards, ideally where my doctor or someone else I know has visited and verified that the standards advertised or designated by law are bring adhered to, 100% of the time. And it's why I'm leery of buying from CutRate drugs in a country 12 time zones away, or El Cheapo bulk supplements, when I can't trust that the ranitidine my doctor prescribed isn't contsminated either.

With an injectable, the stakes are even higher. There is a risk for serious infection, sepsis, and even death. I would hope that anyone in the industry of compounding injectable substances would be exceedingly cautious about how they're producing them. But there are exceptions. I think it's good to alert people if there are issues but also not fan the flames of falsehoods. I have seen products that I know to be good ones, like intravenous curcumin and dichloroacetate, disappear from the market, while flawed and contaminated FDA drugs kill people everyday. Compounding is a difficult business and many of us depend on compounds and if products become unavailable, patience like us will lack solutions.

If anyone has more information on the scenario above I'd be be very interested. In the meantime, having used the peptides in question and other products from this pharmacy, I have not experienced any problems with the products to date.

 

[Hip]

I am starting to see a pattern in the effects of my GDF11 injections:

I've currently gone down to injecting just 20 picograms of GDF11, but this small dose seems to produce almost as much benefit as the higher 200 and 400 picogram doses I was using earlier.

What I find is that within hours of an injection, the benefits kick in. The positive benefits I notice are much better mood and optimism, more drive and motivation, increased mental focus, and increased energy.

The negatives are the agitation / anxiety / overstimulation / anger / irritability side effects of GDF11, which Steve Perry reports are not uncommon in people who take GDF11. But this side effect is much reduced by using the lower 20 picogram dose. I also found this side effect can be countered to an extent with supplements which reduce testosterone and dihydrotestosterone, such as saw palmetto, zinc and peppermint oil (menthol).

Oddly, in spite of the better mood and increased drive, libido goes down dramatically on GDF11.



In terms of the magnitude of these effects, I am certainly nowhere near the full recovery that Hamsterman achieved with GDF11, but I would say that on the 3-level ME/CFS scale of mild, moderate and severe, GDF11 probably moves me up by perhaps an eighth of a level on that scale, or maybe a bit more. So nothing spectacular for me so far, but the benefits are definitely noticeable.

What I don't like about GDF11 is the agitation / overstimulation / anger side effect. It's hard to relax with this state of mind. Although I have noticed that the mental agitation / overstimulation tends to make me more productive, even though I don't like the feeling. But I suspect most other ME/CFS patients will not get this side effect.



The other thing I've noticed with GDF11 is a rebound effect after a few days, as the injection wears off.

When I inject 20 picograms, it starts working on the same day, and then for the following 2 or 3 days I feel the full effects of the GDF11. But then as it starts wearing off at around the 4th day after the injection, I get a couple of days where I actually feel more tired than normal, and a bit depressed. But then after these 2 rebound days, I return to normal baseline.

So that's a further slight negative of GDF11 I have noticed, which is when I stop, I get this mild rebound effect. However, if I keep taking GDF11 continuously, re-injecting before it wears off, then no rebound is noticed.

 

[CaptainA]

Just want to mention real quick that I'm on my 4th injection and up to 220 picograms every other day. I'm keeping track of everything and will have a more detailed report in another week, but I will say that GDF11 is doing things in my body that almost make me feel normal again. The day after the first injection was amazing. The effects after each injection after that have been less. I may try to up the dose. Also, don't notice any change in mood as others have noticed.

 

[lateM98]

Seriously people, there is about ~1mg of GDF11 in your body at any single point in time, GDF11 has a half life of 12 hours. Few hundreds picograms per week or even every day will not even nudge the blood concentration. What most of you are probably experiencing is either a confounding factor, you are obtaining something else other than GDF11, or simply the euphoria of first time injecting yourself, which is often anecdotally reported, myself having experiencing it too.

 

[Hip]

Seriously people, there is about ~1mg of GDF11 in your body at any single point in time

Do you have a reference for that?

I experienced very clearcut and repeatable adverse effects from picogram dose injection, so we cannot call this a placebo effect. I had no idea beforehand that those specific adverse effects would appear, so it cannot be nocebo either.

And I have injected myself with lots of different substances over the years, so injection is not a novelty for me.


Note that some studies on GDF11 levels in the blood are flawed because early assays were non-specific and would detect both GDF11 and GDF8 (myostatin). Ref: here

 

[CaptainA]

Seriously people, there is about ~1mg of GDF11 in your body at any single point in time, GDF11 has a half life of 12 hours. Few hundreds picograms per week or even every day will not even nudge the blood concentration. What most of you are probably experiencing is either a confounding factor, you are obtaining something else other than GDF11, or simply the euphoria of first time injecting yourself, which is often anecdotally reported, myself having experiencing it too.

I'm always very skeptical of new treatments and I almost always believe that they wont work. This was true with the Staph Vaccine I injected for months, and it was also true with the Cortene trial I was part of. I basically felt no effects of those two things. Even directly after injection. I can honest to god say that I've tried almost 100 different treatments and that this one actually feels like it is doing something. I will say however that after the first injection, each time I'm injecting, the effects of it seem to wear off faster. I'm hoping that I can see the same positive effects as the person that went into remission after feeling no effects for 2 months.

 

[lateM98]

Do you have a reference for that?

I have to admit that I made a mistake, also you are right, there seem to be a lot of inconsistency in reported GDF11 concentrations.

Here is a study published in nature using a fancy measurement assay to avoid confounding with GFD8. Average GDF11 concentration in Chinese menopausal women is estimated at 5.92 ng/ml which equals 5.92 mcg/l, assuming a volume of distribution of 10l which is about that for most of these large polypeptides and quite conservative too, so you get about 59.2 mcg. The study suggest that GDF11 concentration raises with age. So let's assume that the average adult 20-40 years has only 1/50 of that, which is what some other studies seem to suggest, that's about 1 mcg of total circulating GDF11. You still won't nudge the blood concentration injecting few hundreds picograms even if you did it everyday, because 100pg = 0.0001mcg. Add to that the fact that subcutaneous absorption of these polypeptides is not optimial. Picogram is just too low of a dose. Few hundreds nanograms is the lowest meaningful dose you can be injecting.

Again, the burden of the proof that what you are injecting is actual GDF11 falls on you. Where are you ordering the GDF11 from? Is it from a cited lab or manufacturer? Or some random website claiming to sell you GDF11? Why don't you take your GDF11 to a lab and test it? It may turn out that it's some random nootropic peptide with GDF11 label slapped on it.

I'm always very skeptical of new treatments and I almost always believe that they wont work. This was true with the Staph Vaccine I injected for months, and it was also true with the Cortene trial I was part of. I basically felt no effects of those two things. Even directly after injection. I can honest to god say that I've tried almost 100 different treatments and that this one actually feels like it is doing something. I will say however that after the first injection, each time I'm injecting, the effects of it seem to wear off faster. I'm hoping that I can see the same positive effects as the person that went into remission after feeling no effects for 2 months.

Wow! You were part of the Cortene trial? How did it go? Can you share some more?

 

[wigglethemouse]

How did it go?

Cortene updated the results here
https://clinicaltrials.gov/ct2/show/results/NCT03613129

 

[beatsmyth]

That's incredible! So would you say that after 3 months, the combo of BPC-157 and LL-37 has taken you from severe to mild, on the ME/CFS scale of: very severe, severe, moderate, mild, remission?

What actual doses of these products were you taking during the 3 month period? And do you find that you have to keep taking them to prevent the ME/CFS symptoms returning? Or has their beneficial effect been semi-permanent?

Would you happen to know which pathogens your ME/CFS is associated with (eg, coxsackievirus B, echovirus, Epstein-Barr virus, cytomegalovirus, HHV-6, etc)?

Yes after 3 months, I went from severe to Mild, on BPC-157 and LL-37, but I still have to be careful with over exertion, and still have bad days (now its like 2 bad days a week, verses all bad days a week)

with the LL-37, I was taking daily a very minimal dosage into belly fat. Dont have my notes on me, but basically I halved the recommended dose. As far as benficial effects, Im off the LL-37 for several months now and my stomach is still all good, honestly never thought I would be able to fix my stomach issues, but this has been a Godsend. BPC-157 has also left some permanent results, less joint and less nerve pain, but also in general I found as long as I stay on the BPC, its much better than to be off of it overall

As far pathogen associations, Mycoplasma, HHV-6, and EBV. Massive improvement also once I went on low dose Potassium Iodide daily with selenium, and did an 8 month hard core multiple ABX therapy

@Yuno I get my Peptides from Canlabs, he works at the University and makes his Peptides there in the lab

 

[Hip]

that's about 1 mcg of total circulating GDF11.

You still won't nudge the blood concentration injecting few hundreds picograms even if you did it everyday

I see your point, and I would agree that on first analysis, it does not make much sense that dose in the order of 100 to 500 picograms daily would substantially alter circulating GDF11 levels.

Yet I am pretty confident that the picogram doses I was injecting had a physiological effect, because of the strong mental agitation / anxiety / overstimulation / anger / irritability side effect I mentioned earlier.

The only possible explanation I can think of is something along the lines of plasma protein binding. As you may know, many substances in the blood bind to plasma proteins, and when they do so, they usually become inert and inactive. It is only the portion of the substance freely dissolved in the plasma which has an active physiological effect, but the protein bound portion is inactive (this is called the free drug principle). This applies both to drugs and supplements as well as endogenous substances like hormones.

When you measure the concentration of a substance in the blood, it usually includes the sum total of the free and protein-bound concentrations of the substance.

Now, I am not sure if GDF11 does bind to plasma proteins, but even if it does not, it says here that:

Signaling by GDF11 ... is regulated by extracellular binding proteins that are typically thought to function as antagonists.

Thus if I have understood correctly, GDF11 binds to proteins on cells and becomes inactive. So much of the GDF11 in circulation may be inactive.


So, I am thinking that when you inject picogram doses of GDF11, perhaps initially the injected GDF11 does not immediately bind to proteins, and therefore remains active. This could perhaps explain why such tiny doses have a strong effect. That's just a guess though.

Again, the burden of the proof that what you are injecting is actual GDF11 falls on you. Where are you ordering the GDF11 from? Is it from a cited lab or manufacturer? Or some random website claiming to sell you GDF11? Why don't you take your GDF11 to a lab and test it? It may turn out that it's some random nootropic peptide with GDF11 label slapped on it.

I have no desire to organize lab tests which demonstrate that my GDF11 is kosher. I bought my GDF11 from the same source as Hamsterman (buckylabs.com), so I am using the same substance that he found greatly helped his ME/CFS. My interest is in trying to replicate his results. Which so far I have failed to do, as my improvement in ME/CFS from GDF11 was only relatively small, about an upward movement of around one eighth of a level on the 3-level ME/CFS scale of mild, moderate and severe.