Had no effect from recollection.
What i bought was an oral analogue of Allopregnanolone, known as SAGE-217 or Zuranolone…It binds the same spot as Allo but you can take it orally…
The problem with Allo, it has very short and limited halfe life, and you can only give subcutaneously or directly in the vein…You cant just swallow it.
My trial with SAGE-217 was to say the least very bad…I cant exclude Placebo ofcourse, but i literally got worse after taking it for 2 weeks…I got the same anxiety i got after the crash, and my tinnitus has gotten really worse…
For the time being, i wouldnt advice SAGE-217 to anyone, but i wont mind trying Allo at all (As it is still different than sage-217 in the fact that it gets metabolized to 5-DHP, which is very low in PFSer as well)…
As i said since Allo cant be taken orally, we have 2 options to try it…Try to find a company who can sterilize an already bought powdered Allo, and mix it with Albumin for example (All rats experiments with Allo use this method)…Or go directly to the already human tested and approved formula (Known as Brexanolone), and pay 40 Tsd dollar for it.
The fact that people are using themselves as lab rats over all this is deeply upsetting to me.
So you would rather wait for help that may never come? Don’t forget PFS isn’t even acknowledged yet, even worse it’s existence is being denied, so who will help us if not ourselves?
I’ll repeat. The fact that people are using themselves as lab rats over all this is deeply upsetting to me. This is a perfect reasonable statement pertaining to the terrible world we now inhabit. Thank you.
Thank you for the reply . Lots of good info there.
What do you expect of Allopreg treatment? Improvement of some symptoms?
What is 40 Tsd dollar in Canadian or American currency or is this a typo so 40 us a pill? Maybe a medical benefit plan would cover some or most of the cost. Has anyone tried Brexanolone?
Improvement, cure, or worsening…No one can tell for sure
Sadly its not a typo…This is the cost of the treatment. It is given only in hospital setting under onitoring, and directly in the vein for three days and it is only approved for depressed women who just had a child known as postpartum depression, so you need someone who is really open minded to do such treatment „off label“.
Guys I understand that you want cure soon as possible but research and sperimentation don’t work like this. Before you have to test the (hypothetical) cure on rats,check if it works and after that you can trial on human. But it’s not so easy. On human you have to find a clinical team that take responsibility. And don’t say Allo it’s already use. Because on PFS guys it has never been tested.
And of course, prof. Melcangi will not use braxanole o sage, but pure Allo.
Other than it made you worse this is good info. As far as trying Allopregnanolone goes using Brexanolone sounds like the best option. It’s an infusion and must be giving under doctors supervision. I’m about the cause but even if we could get our hands on this giving ourself an infusion over a three day period does not sound practical. This will require a doctor’s order and supervision.
Is it your understanding that the only difference between SAGE-217 and Allopregnanolone that Allopregnanolone can covert back to 5a-DHP? No difference in how it can effect us?
You could order 5a-DHP which a handful of us including my self have tried with limited results.
5a-DHP converts to Allopregnanolone via 3a-Hydroxysteroid dehydrogenase (3a-HSD). This enzyme can also convert Allopregnanolone back into 5a-DHP.
You could try taking 5a-DHP. But in my opinion unless we are low in either 5a-DHP or Allopregnanolone it wont help and we are more likely to get worse from it. We need members to get tested for Allopregnanolone. I am looking for a way that we can get tested for it. In one of the Neuroactive steroid levels studies 5a-DHP was low in the CFS of the PFS group and in the other study 5a-DHP was low in plasma. So clearly 5a-DHP and possible issue with 5a-DHP converting to Allopregnanolone is something of interest for us but we really need to get tested for these things. It’s clear from some of the other forums that there are different cases of PFS. If I had to guess it’s probable because we took drugs that bind NADPH which 5AR and other enzymes in the hormonal pathway need to work. So we all probable ended up with different enzyme disorders causing similar symptoms. So there will never be a one size fits all solution. We really need to get our own testing down and figure out which enzymes are causing our own imbalances so that we can start figuring out what exactly our malfunction is.
That’s exactly what I think.
I acknowledge that addressing apparent deficiencies in labwork is often unsuccessful.
However, I think this is the only route we reasonably have.
I’m not really convinced there will be a silver bullet that will collectively help us all, considering the symptoms & their occurrence and people’s reactions to supplements are WIDELY varying.
I think everyone has to understand their own manifestation of PFS through testing & labwork. If we had a comprehensive list of labwork, correlated with symptoms, and responses to various supplements, we could begin to start mapping different PFS profiles and see if there are commonalities.
Right now, the only documented commonality is the use our use of a large list of drugs, not even the same drug. Some people are here from taking JUST minoxidil or JUST saw palmetto. And some are here from Accutane and SSRI’s.
I’m imagining a database of bloodwork that could be paired with the ongoing database of survey answers.
I know we’re also doing a DNA database analysis as well.
It seems people assume that labwork is trivial or useless because there’s no consistency in labwork amongst us & that the response to modifying lab readings doesn’t correlate to improvements. But I think this is a mischaracterization. It could be just that we’re not assessing them in a way to notice patterns pr derive theories off of them.
I’m with you, in the boat that, I want to get as much testing done on my body. Preferably, over intervals of time to document & understand their fluctuation as well. This is the only route I have to understand what’s happening in my body.
It seems we have so many members willing to throw everything including the kitchen sink at their bodies in terms of supplements. But this is how we got here. Without a clear understanding of our hormonal profiles & playing with them using supplements that we don’t understand the full implications of.
I’m going to definitely look into getting my neurosteroids measured.
I completely agree with everything you said. I am in the progress of trying to find a company that may be able to get us affordable neurosteroid metabolite testing. This needs to happen. If am low in 3b-diol others probable are as well and we really need to find these patterns. We know some of us stuck in a PFS state have high DHT and some have low. We know that some of us stuck in a PFS state have high cortisol while others have low cortisol. In my opinion we need to find high and or low neurosteriod metabolite levels of all downstream metabolites and connect them with high DHT vs low DHT cases. This website is an amazing resource and I think that as a community if we can get scientific we could figure this out. We need access to mass group affordable testing of these downstream metabolites so that we can know our status. This way we are not doing things like blindly throwing 5a-DHP in our bodies before we even know if we need it.
Microbiota composition could be a factor controlling susceptibility to PFS.
This researcher seems to have an interest in this.
One of the steroids he’s looking at, or its precursor.
Again maybe this could be a two way street, idk.
Progesterone Increases Bifidobacterium Relative Abundance During Late Pregnancy
New study proves for the first time that intestinal bacteria grow in pregnant women
Just to pull a couple of thoughts from that last link,
Bacteria are important in fighting disease.
the microbiome is partially responsible for essential inflammatory response.
The researchers, led by Koren, discovered that pregnant women exhibited an increase in the level of progesterone accompanied by an increased inflammatory response. They also recorded an increase in other bacteria, but Bifidobacterium was the only one bacteria that was identical to pregnancy in mice. When they imitated pregnancy in mice (using progesterone) they again found that Bifidobacterium increased, leading them to conclude that Bifidobacterium somehow senses progesterone and reacts to it. When the researchers administered progesterone in vitro, they again found that Bifidobacterium increased rapidly. This led them to conclude that Bifidobacterium senses and responds to progesterone.
Ive been taking a higher dose of Align (bifido longum) up to 35 billion per day, and more recently its caused me to break out in hives. A type of reaction I have hardly ever had in my life.
Im more curious if there is something beyond this, because it could (or couldn’t) be a sign of ramped up immunity or a type of clearing.
Infections can cause hives in some people. In fact, viral infections cause more than 80 percent of all cases of acute hives in children. A variety of viruses can cause hives (even routine cold viruses). The hives seem to appear as the immune system begins to clear the infection, sometimes one week or more after the illness begins. The hives usually persist for one week or two and then disappear.
Im also going to get a covid drive through test in the very near future just in case.
Are you doing anything to promote scientific research of our condition?
Does anyone want join the fundraising for this project ?
I thought to accept donations at least 500€
Personally I agree with the mods when they say the focus is too narrow and not accurate for what we need
I’m more interested in genetic level studies and the mechanisms probing into whatever findings
Currently trying to raise capital too from private investors but have a lot of things going on
There’s definitely huge flaws in what Melcangi is proposing. His theory fails to account for a significant portion of the symptom profile that our data shows is characteristic of PFS. He doesn’t seem to accept this.
He’s also asking for significant funds which will suck up money that we all hope will be used for more relevant studies. This would be a huge problem as unfortunately there will be a very limited amount available to us. Studies that are predicted on flawed theories, when unsuccessful, will likely be used as evidence by the PFS naysayers and hinder future research.
In this study melcangi take allopregnonalone for a rat.