Have any of you tried injections of Zulresso, a drug to restore allopregnanolone levels? This appears to be the key to recovering from PFS.
It looks promising. I raised a query on it last year and can’t remember anyone trying it. I believe it’s very difficult to acquire
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it might work for some people
and it might not for others
hopefully it works for everyone
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This appears to be the key to recovering from PFS you say? May I ask you how do you come to that conclusion?
Do you know anyone that has recovered from PFS using Zulresso? Did you find a study that says this leads to recovery in PFS patients? Or did you just pick a random medicine you think might be worth a try?
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I’m sorry. You are right. I got caught up in enthusiasm perhaps as a cover for despair and the exhausting search for hope. I don’t know if that’s the key, I just wish it was. A very different thing.But anyway there is recently a curriculum of studies around allopregnanolone for the PFS.
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Several of us tried 5a-DHP which converts to allopregnanolone via the 3a-HSD enzyme.
Progesterone converts to 5a-DHP via 5AR. 5a-DHP converts to Allopregnenolone via 3a-HSD.
User: “Thisisarealbummer” speculates that when he inhibited 5AR that he lowered his allopregnanolone levels and that this resulted in his Gaba receptors becoming more sensitive because allopregnanolone is a potent
positive Gaba receptor allosteric modulator
Thisisarealbummer further speculates that when his allopregnenolone levels returned back to normal that the allopregnenolone hit overly sensitive Gaba receptors causing the Gaba receptors to down regulate becoming intolerant to allopregnenolone and Gaba. I speculate that I have this issue as well combined with other issues
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I think that we should do our best to find out what our allopregnenolone levels are prior to trying this
ZRT lab will test it in urine
It would be good if Thisisarealbummer could explain in more detail which doctor/research facility in the US agreed to test his allopregnenlone levels via a spinal tap. Giving the significant findings of his result it seems logical that more of us move to get this done
I would get it done tomorrow if I could. This should be a priority of everyone here and the PFS foundation
@lakehouse like with most supps etc for those where the receptors are fucked it won’t work. Others should get an almost immediate improvement. .my thoughts only which are based in my reaction to allo/ gaba much earlier on in this disease
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What was your reaction to Gaba and Alleopreg earlier on in PFS?
Did you get worse from trying Thisisarealbummer’s Alleopregnenolone’s tolerance protocol ?
What have you had done for labs?
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@5-alpha-victim I didn’t know I had PFS but took thm to boost HGH . I looked great physically, firing on all cylinders, very strong, wellbeing, memory. I took them on and off as a supplement which was a natural hgh booster also had the likes of tyrosine, glutamin, orthanine in it. I was also taking propecia on and off unaware it had brought on the anxiety and insomnia. As said that wasn’t tied up until years later by which time my health had deteriated beyond recognition. I immediately stopped fin. My t was low two years ago but fully recovered after 6 months with no improvement, well actually worsening. Demonstrating receptor problems.
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Sorry to hear about your experience. I don’t think I’m tracking your story with a high degree of understanding and detail. But I get the bear bones version of it
Did you ever have Alleopregnenolone testing?
Any other neurosteriod testing ?
Did you ever have DHT testing?
How much worse would you say thisisarealbummers protocol made you ?
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@5-alpha-victim no neuro steroid or DHT testing. I’ve always had a decent grasp of nutrition and supps so tried things myself prior to finding this site 3 years ago when I discovered I’d already tried everything suggested to stem my deteriation. Early 2000s everything helped I reacted normally to most things. From 2008 I started to get mini uplifts then nothing. Eg granite then soft muscles then they’d return to normal but still relatively hard. I started to get mood swings but still looked good. I generally rotated supps and ate exceptionally healthily. Things continued to deteriorate until it started to get out of hand the last 7, the last 3 to 4 has brought the crushing physical slide. I’ve been off fin for 3 years now Hope this explains a little better.
Wow you have been at this for a while like myself.
So you were on fin for a long time ?
I read in thisisarealbummers thread that you got worse from trying bacopa recently.
What specific sides worsened from the bacopa ?
I wonder if we could find a correlation between high and low urine Allopregnenolone levels and people who get better or worse from bacopa
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I wonder if we could find a correlation between high and low urine Allopregnenolone levels and people who get better or worse from bacopa. This is the type of stuff that I’m after. Finding correlations with specific lab values and results from specific trials of specific substances in specific people
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@5-alpha-victim I started it in the late 90s and unexpectedly got hit with anxiety and insomnia within weeks neither of which I suffered from previously. I was the opposite, nothing phased me I was a bit too much for some people as was always full of fun, made light of life. Suffering from rheumatoid clouded the cause. I took fin on and off for roughly 17 years. I stopped and started it regularly, once j gained full coverage id stop for 3 months. My GP prescribed paroxetene (works on Allo) which masked it for 6 years ISH. Then I got testicular cancer and so on. When I took bacopa I had a massive histamine response but slept 8 hours. Over the course of the next day I felt the anxiety lift "it’s normally with me 24/7 then i started to inwardly giggle finding things funny that were otherwise annoying me and causing constant rumination. I wanted to socialise which I did. I was relaxed the opposite to the PFS me. I took another the 2nd day and had another histamine but to a lesser degree, my sleep wasn’t as good but not as bad as normal. My collagen started to refill and strength started to return the. It fell away new collagen loss appeared, daytime sweating and I started to piss like a horse which was even worse than normal. The same happened when i tried trt gel. For me it seems to precede a crash. Bacopa obviously worked on my Gabba and Allo then overwhelmed the receptors. The same thing happens on the occasion I have alcohol. Ill sleep better and won’t be up all night pissing then the following night I’m never away from the urinal. I’d say there’s a definite correlation. How long have you had PFS and how long did u take the shit for?
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I don’t know if the question is for me. I answer anyway: I have been taking finasteride and minoxidil for 6 months. I had the “crash” after 2 months but I continued to take them not thinking about the correlation between my extreme discomfort and these drugs
I took dutasteride (avodart) when I was 22 years ago of for prostate enlargement. Interestingly I did not get PFS or have any issues at that time. I do believe that the decrease in allopregnenolone while on dutasteride and the rise in allopregnenolone when coming off dutasteride messed up my GABAa receptors even though I did not have any noticeable problems at that time.
When I was 26 I took Saw P and a natural aromatase inhibitor for two weeks and got all the PFS sexual sides while on the Saw P and natural aromatase inhibitor. Shortly thereafter I took Clomid and a prescription aromatase inhibitor and all of the sexual sides got worse. When I was 29 I took Saw P again and developed severe insomnia and digestive issues.
Over the next seven years I recovered the insomnia to 80 percent pre PFS and the constipation about 50 percent pre PFS. I made very little progress in the sexual sides. Recently I started experimenting with amino acids while testing urine neurotransmitters. I cured my constipation completely while taking several amino acids and increasing natural production of several neurotransmitters. However doing this also put me back in the same severe insomnia that I got seven years ago on the second round of Saw P.
In my opinion neurotransmitters and neurosteriods are out of balance and are responsible for all of these symptoms. The question in my mind is if it’s possible to get them back in balance. Additionally in my opinion depending on how messed up they got is the difference between why some recover and why some don’t recover over time and healthy living such as the CDnuts protocol. I don’t think my condition has anything to do with autoimmune or gut issues. In my opinion my immune system and gut reactions are in result of neurotransmitters and neurosteriods being out of balance.
I read that paroxetene is a Selective Serotonin Reuptake Inhibitor.
“Paroxetine is the most potent and one of the most specific selective serotonin (5-hydroxytryptamine, 5-HT) reuptake inhibitors (SSRIs).[82] It also binds to the allosteric site of the serotonin transporter, similarly, but less potently, than escitalopram.[83] Paroxetine also inhibits the reuptake of norepinephrine to a lesser extent (<50 nmol/L)”
So Bacopa made you sleep and feel better? How did the histamine response manifest itself while on the bacopa? In other words how did you know you were having a histamine response?
So you notice when you initially feel better on Bacopa and TRT it’s usually followed by a crash?
According to thisisarealbummer Bacopa up regulated and or recalibrated his GABAa receptors which he believed were intolerant/down regulated in result of Allopregnanolone increasing after he discontinued Fin
Your abnormal reaction to alcohol could be because your GABAa receptors are messed up. Alcohol is a GABAa agonist.
How many times have you experimented with bacopa?
Also do you have a source for paroxetene
impacting Allopregnanolone or the GABAa receptors. From what I read paroxetene is a Selective Serotonin Reuptake Inhibitor. The only reason I’m asking is because I think I remember you saying trazodone made you worse and trazodone is a serotonin reuptake inhibitor. So I’m curious to know when your doctor gave you paroxetene while you were on Fin which you believe masked your PFS issues was this because you were inhibiting the reuptake of serotonin or increasing Allopregnanolone while on paroxetene
If originally inhibiting the reuptake of serotonin was helping you while on fin “by masking things” and if later while off fin well into PFS you inhibited the reuptake of serotonin again and got worse this could give us more insight about how serotonin comes into play with PFS
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@5-alpha-victim I agree that the neurosteroids are out of wack and play a major part in the extensive symptom list of pfs. For the last few days “ended abruptly today” my mood had improved slightly I even had wood but discovered brown rice was in a cereal I was eating (5ar) which had effected my baseline state, I noticed I was getting even dryer peeling skin. Lowering dht temporarily. Androgens and receptors are also a big part of this which are maybe effected by the neoros or visa versa. Within a few hours of taking bacopa a histamine response manifested. Ive had hayfever since my teens and it was the same symptoms but stronger. I slept 8 hours that night and through the course of the following day my personality / mood came back on line. Even my collagen started to refill. Then I capitulated that night. I retried two days later and the histamine was worse and the benefits less. I also perspired ridiculously. Two days of TRT were similar. Everything I’ve tried has brought improvements then crashes. Years ago I’d get a brief uplift then there would no effect eg insane muscles from over the counter health supps . No crash though. The crashes started hitting me about 3 years ago, saying that I’d lose my temper and become irritable without knowing the cause prior to this. I am or was should I say a very chilled guy full of humour as well as being an alpha male. Nothing bothered me. . My first crash was in 98 after two ISH weeks of propecia, waves of terror and anxiety came over me when I was standing in the garden… The doc prescribed me paroxetene then, unaware of pfs. I don’t know what increased or decreased neuro wise but it did the trick. I’m assuming my receptors were in a functional state at this point. I feel temp improvements from carb so I expect seretonin isn’t a major issue. Im convinced Gabba, dopamine, Allo and test are not getting through in my case with EST problems too. This is evident in my baseline, loss of masculinity, strength, no reaction to exercise, zero wood, attraction to birds awful permanent anxiety, suicidal thoughts etc. I tried aminos without success. To note trazadone brought the worst response I’ve experienced. Terror, raging heart, suicidal and permanent changes to my autonomic system. I also retried paroxetene and it simply didn’t work 'no crash" I recall this vividly i took krill oil approx 5 years ago and my muscles were like granite I felt unbelievable didn’t know I had PFS they remained pumped outside of exercise at about the three week point I collapsed and my bp was all over the place with severe headaches. I was rushed to hosp “no intervention” was off work for two weeks with a heart monitor. No mental crash. Out of curiosity I took half a capsule approx 2 years ago and I had an awful night with extreme anxiety and insomnia. Shows how things have progressed.
I’ve just received the OK from my doctor for an allopregnanolone (Zulresso) and am researching infusion centers. Has anyone undergone this infusion, or heard of anything positive or negative about it?
It’s a big financial investment, and carries unknown risks, and while my time is running out, I’ll avoid if there’s been negative feedback.
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@NewYorker someone on this forum trialled previously but from memory there was no negative reaction. Just neutral.
Best of luck with it, I hope you find some relief.
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