Hey Everyone,

I built a search tool with the recovery database I made a while back. I cleaned up a lot of false entries (I used programming to extract stories— didn't have a 100% success rate) and tidied things up, so it should be good to go. There are over 800 recovery stories. You can sort by diagnosis, treatment, and recovery level.

Check it out here: https://www.postexposurefoundation.com/recovery-database

Also, I am a one man band and I can make mistakes. If you see anything that looks off or a duplicate— just DM me or contact me via the website :) I hope you find this helpful!

To Taimi Staff,

I am back on the apps after a long break, and I saw that you cannot modify age without paying. I don't mean to be abrasive, but I think this is a really bad move on your end for a number of reasons. I'm in my mid-20s, and I feel uncomfortable and creeped out by men older than my parents messaging me, seeing my face, and relative location. Also, it's a foolproof way to ruin self-esteem in young people. I understand you need to monetize your app, and I also understand that it is really difficult to make a profit, but there has got to be a better way than gatekeeping the age filter. I hope you can sort something out.

Hey everyone,

I was analyzing my hormone results (25M), and I wanted to run it by you all. I have done multiple tests over the past year, and have found these results:

• Testosterone, total: 670 ng/dL (high-normal)
• Testosterone, free: 95 pg/mL (low-normal)
• Testosterone, bioavailable: 211 ng/dL (normal)
• DHT (2024): 961,1 pg/mL (above range)
• Progesterone: 0.49 nmol/l (borderline low)

A normal DHT:T ratio in men is about 8-12%, for me, its 14.3% (961.1 / 6,700 = 0.143). A typical man with this ratio is someone who is quite hairy, high competitiveness, reactively agressive, and high libido. Although it's not universal— it's correlated.

However, on my end, I'm much shorter than my father (by more than 13cm), do not have much body hair— barely any arm hair, I'm not hyper-competitive nor aggressive, and obviously little libido. I have been exposed to psychotropic drugs on-and-off since 12 years old, and that leads me to think that perhaps for some of those with PSSD, their illness could be rooted in some sort of form of mild acquired post androgen insensitivity syndrome (PAIS).

Clearly, there is no issue here as seen in post-fin, where 5-alpha reductase is faulty. Rather, in my case at least, it seems that the receptors or the tissue themselves have been desensitized to hormones.

What are your thoughts?

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Hey everyone,

I wanted to tell you about my experience with Dr. Jacobs in short. I felt from the start that he was telling me things that I wanted to hear, simplifying what is a medical mystery. His tool kit doesn’t go beyond what is available in the general endocrinologist office or what you can get online and he charges $600 per visit.

My biggest grievance is the lack of communication. For over a month I have been trying to get in touch with him in regards to test results that he ordered, and a receipt with billing codes for my insurance. I can’t get in touch with him nor his nurse. Radio silence. This makes me feel that I was scammed.

I’m sure others have had different experiences with him, but this was mine. I would suggest looking elsewhere.

My MCAS presents as primarily burning sensations in the lips and chest accompanied by irritability and what I can only describe as a “brain on fire” feeling— where my thoughts are fast and for lack of better words, crazy. I had a rapid improvement on Zyrtec and continue to take it. However, I feel kind of like a zombie afterwards. All it does is take away the storm.

Does anyone else have a similar presentation? if so, what did you fine helpful?

Hello Everyone!

For starters, I would like to thank everyone who participated in the PEF survey. Although I have fallen short of the initial goal of 100 respondents, but I've found some things worth sharing. I also published a couple of resources that are helpful.

Kaggle Datasets

Until this week, there were zero PFS datasets on Kaggle. Now there are two:

• 800+ recovery stories on Kaggle.
• Anonymized PEF survey results on Kaggle.

It is free to view and download, and you can open it on your laptop or in Google Drive pretty easily. For those unfamiliar, Kaggle is a popular website where data scientists, researchers, and students apply programming techniques to find patterns in data that are invisible to the naked eye. If these gain traction, it is a way for us to be seen by people with the tools to actually help provide us much-needed answers. The more PFS data on there, the more people have to work with.

PEF Survey Results & Insights

Database Link (Anonymized)

PEF Survey Link

Onset Time: It hits fast— and that is rare.

Onset time across PSSD, PFS, PAS and PALMS (n=41)

Nearly half of respondents contracted their post-exposure syndrome within one week. A majority had a rather fast onset at <4 Weeks. When comparing the time of onset to other systemic diseases— this is extremely abnormal. Most systemic diseases do not behave this way. For instance, typical autoimmune diseases (e.g. Lupus) develop gradually over months-to-years. Hypothyroidism, and other endocrine issues, take months. Not even HIV shows symptoms in such a short duration. Generally, only infectious diseases (e.g. common cold) become symptomatic in such a short period. This phenomenon warrants proper research.

Symptom Burden by Diagnosis: PSSD is the most severe, PFS trails slightly behind.

Symptom Heatmap (10 = Severe) (n=46)

The database was split across four diagnoses, all skewing heavily male:

• PSSD (n = 23, median age = 34), avg. severity 4.92
• Post Ashwagandha/Lions Mane (PALMS) (n = 10, median age = 33), avg. severity 4.05
• PFS (n = 12, median age = 33), avg. severity 4.52
• PAS (n = 1, age = 31) avg. severity N/A

The symptom heatmap below depicts the average severity per symptom cluster per diagnosis ranging from 0 to 10, with 10 being severe symptoms. Just by glancing, it is evident to see that PSSD takes the cake as the most severe manifestation. A large caveat here is that we only have one respondent for Post-Accutane Syndrome, so a more robust average for symptoms across the PAS community is impossible to gauge at the moment. Furthermore, it is important to keep in mind that every person's experience is unique, and all post-exposure syndromes are debilitating.

As visualized, it is evident that Emotional, Social, Cognitive, Sexual and Fatigue-related symptoms are the most universal. PSSD has a unique discrepancy in regards to neuropathic symptoms, whereas Autonomic and Cardiovascular symptoms are higher in PFS folk, and fatigue seems to be a severe issue in those with PALMS.

Symptoms correlate in interesting ways

Symptom correlations across PSSD, PFS, PALMS and PAS. 0 = No correlation. 1 = strong correlation. (n=46)

Not everyone here will be familiar with correlation matrices, so I'll skip the explanation and jump to the conclusion: the emotional, mental, and social symptoms tend to come as a package, while the sexual symptoms often run on their own track.

Recovery Database Insights

Database link

The database consists of anecdotes posted publicly online from the late 2000s to today. The most common treatments include hormonal treatments, bupropion, and Cyproheptadine. Others have seen success with Ibogaine, Kisspeptin, NSI-189 and Probiotics. None of this is medical advice nor a suggestion to partake in any intervention without medical supervision.

Total Recovery Anecdotes: 825

Distinct Regimens: 465

Most Common Treatment Found: HCG

PSSD/PFS/PAS Ratio: 700:122:14

Recovery levels per most common treatments

Conclusions + TLDR

To be transparent with you, I am lacking data to provide more substantial and groundbreaking insights into this mystery condition. If you haven't, please click here to fill out the PEF Survey— especially if you have done any sort of medical testing.

Again, a big thank you to everyone who has helped with the survey so far, and a special shoutout to my friend at Inida who helped me with the data analysis.

I believe that with the power of data, we'll reach 1,000 recovery anecdotes one day... then 2,000, then 5,000. The answers we're all looking for are missing because the data is missing. The more organized information we have, the harder we are to ignore.

Thank you for reading.

Brain-Fog Friendly TLDR:

• PFS has a fast onset. That is unusual in medicine.
• PSSD, PFS, PALMS, and PAS are all awful— but PSSD most severe on average
• Sexual symptoms independent of other symptoms severity for all diagnoses
• Database links under headers
• PEF Survey is still open for submissions.
• Hormonal treatments, bupropion, and Cyproheptadine are the most common interventions

Hey Guys,

I wanted to thank everyone who has responded thus far. We are at 45 responses, which is still quite small to apply thorough data analysis techniques on. The first goalpost is 100 responses.

Please help us give you the answers you are looking for, the survey takes no more than 15 minutes to complete. You can find it here: https://www.postexposurefoundation.com/pef-project

Anyone with post-Ash, post-Lions Mane, and PSSD/PFS/PAS is invited to partake. Your response is very appreciated! Thanks again.

Hey guys,

I'm not a frequent gamer but I came across this game Meccha Chameleon and I instantly wanted to try it. I downloaded the CrossOver 2-Week trial on my Mac and bought the game, since I don't have Windows. I got the game to open and work, albeit with some bugs. However, many times I get a screen where I must download a mod to partake in the game, and I am unable to with my current setup. Has anyone figured out how to fix this?

Hi everyone! 👋

I have been struggling with a condition called Post SSRI Syndrome, also known as Post-SSRI sexual dysfunction, since I was fourteen years old, so about a decade now. It is. I try to stay proactive in letting you all know about any updates I have with my attempts to treat this condition. Unfortunately, I don't have the cure, but recently I've been thinking a little bit outside of the box.

Whenever I feel desperate, I tend to "knock on doors". This means sending emails to experts, getting on the waitlist for clinics, and so forth. Lately, an idea came to me that could open doors for all of us as a community.

I thought to myself, what if there was a unified database with info about PSSD patients that we could analyze? Nowadays, data science is booming. I have a degree in data science, and I can attest first-hand how powerful it really is. It's already revolutionized medicine ranging from imaging to genomics to precision medicine. It has even been used to develop an FDA-cleared algorithm that can detect diabetes-related blindness years before doctors are able to. Just imagine what it could do for us.

This leads me to why I am posting today. I have built a survey on my website-in-progress that is dedicated to us. The survey asks about background information (medical and demographic), symptoms, biomarkers, and attempted interventions. The goal is to identify subtypes of PSSD, to understand what interventions work/crash who and why, and frankly, to go viral in the bioinformatics field.

The survey will be published on Kaggle with zero personal identifying information (I only ask for an email and a first name to prevent accidental duplicates). Kaggle is the hub of data science which regularly hosts competitions and spotlights good datasets— some of which have millions of downloads. Every university student, researcher, or literally anyone who has dabbled in programming is familiar with it. Imagine how much exposure and rallying we could accomplish if we have a PSSD dataset on there? If the cookie crumbles in our favor, the condition would go from being fringe and sidelined to being studied rigorously like Long Covid.

The benefit of this is really limitless, and the worst case scenario is that we learn something new about our condition. Unlike some of the other causes going around right now, this one doesn't require any money. It's low risk and high reward.

If you have a free moment today, please take the time to fill out my survey. I took a long time building it, and it would mean the world to me. You can find the survey here: https://www.postexposurefoundation.com/pef-project

Note: I am not earning any income from this, nor am I affiliated with any brand, sponsor, or corporation. All I do is out of a desire to provide much-needed answer to a community that desperately needs it. Thank you for reading.

Hi everyone! 👋

I have been struggling with PSSD and PFS-spectrum issues since I was fourteen years old as well as, so about a decade now. I try to stay proactive in letting you all know about any updates I have with my attempts to treat this condition. Unfortunately, I don't have the cure, but recently I've been thinking a little bit outside of the box.

Whenever I feel desperate, I tend to "knock on doors". This means sending emails to experts, getting on the waitlist for clinics, and so forth. Lately, an idea came to me that could open doors for all of us as a community.

I thought to myself, what if there was a unified database with info about PSSD patients that we could analyze? Nowadays, data science is booming. I have a degree in data science, and I can attest first-hand how powerful it really is. It's already revolutionized medicine ranging from imaging to genomics to precision medicine. It has even been used to develop an FDA-cleared algorithm that can detect diabetes-related blindness years before doctors are able to. Just imagine what it could do for us.

This leads me to why I am posting today. I have built a survey on my website-in-progress that is dedicated to us. The survey asks about background information (medical and demographic), symptoms, biomarkers, and attempted interventions. The goal is to identify subtypes of PSSD/PFS, to understand what interventions work/crash who and why, and frankly, to go viral in the bioinformatics field.

The survey will be published on Kaggle with zero personal identifying information (I only ask for an email and a first name to prevent accidental duplicates). Kaggle is the hub of data science which regularly hosts competitions and spotlights good datasets— some of which have millions of downloads. Every university student, researcher, or literally anyone who has dabbled in programming is familiar with it. Imagine how much exposure and rallying we could accomplish if we have a PFS dataset on there? If the cookie crumbles in our favor, our condition would go from being fringe and sidelined to being studied rigorously like Long Covid.

The benefit of this is really limitless, and the worst case scenario is that we learn something new about our condition. Unlike some of the other causes going around right now, this one doesn't require any money. It's low risk and high reward.

If you have a free moment today, please take the time to fill out my survey. I took a long time building it, and it would mean the world to me. You can find the survey here: https://www.postexposurefoundation.com/pef-project

Repost to more communities

Hi everyone! 👋

I have been struggling with PSSD-spectrum issues since I was fourteen years old, so about a decade now. I try to stay proactive in letting you all know about any updates I have with my attempts to treat this condition. Unfortunately, I don't have the cure, but recently I've been thinking a little bit outside of the box.

Whenever I feel desperate, I tend to "knock on doors". This means sending emails to experts, getting on the waitlist for clinics, and so forth. Lately, an idea came to me that could open doors for all of us as a community.

I thought to myself, what if there was a unified database with info about PSSD patients that we could analyze? Nowadays, data science is booming. I have a degree in data science, and I can attest first-hand how powerful it really is. It is the technology behind Claude, and ChatGPT. It's already revolutionized medicine ranging from imaging to genomics to precision medicine. It has even been used to develop an FDA-cleared algorithm that can detect diabetes-related blindness years before doctors are able to. Just imagine what it could do for us.

This leads me to why I am posting today. I have built a survey on my website-in-progress that is dedicated to us. The survey asks about background information (medical and demographic), symptoms, biomarkers, and attempted interventions. The goal is to identify subtypes of PSSD, to understand what interventions work/crash who and why, and frankly, to go viral in the bioinformatics field.

The survey will be published on Kaggle with zero personal identifying information (I only ask for an email and a first name to prevent accidental duplicates). Kaggle is the hub of data science which regularly hosts competitions and spotlights good datasets— some of which have millions of downloads. Every university student, researcher, or literally anyone who has dabbled in programming is familiar with it. Imagine how much exposure and rallying we could accomplish if we have a PSSD dataset on there? If the cookie crumbles in our favor, our condition would go from being fringe and sidelined to being studied rigorously like Long Covid.

The benefit of this is really limitless, and the worst case scenario is that we learn something new about our condition. Unlike some of the other causes going around right now, this one doesn't require any money. It's low risk and high reward.

If you have a free moment today, please take the time to fill out my survey. I took a long time building it, and it would mean the world to me. You can find the survey here: https://www.postexposurefoundation.com/pef-project

To mods & participants alike: My website is a self-funded passion project. I am not affiliated with any sort of company and I am making 0 money from this. I do this because I care to help the Anhedonia & PSSD/PFS/PAS community and to provide us with much-needed answers. I will publish the first edition with 100% anonymized data and a professional report once I obtain 100 responses. I am already 25% of the way there and starting to see trends. Your participation matters so much more than you may expect.

Hi everyone! 👋

I have been struggling with PSSD and PFS-spectrum issues since I was fourteen years old as well as, so about a decade now. I try to stay proactive in letting you all know about any updates I have with my attempts to treat this condition. Unfortunately, I don't have the cure, but recently I've been thinking a little bit outside of the box.

Whenever I feel desperate, I tend to "knock on doors". This means sending emails to experts, getting on the waitlist for clinics, and so forth. Lately, an idea came to me that could open doors for all of us as a community.

I thought to myself, what if there was a unified database with info about PSSD/PFS/PAS patients that we could analyze? Nowadays, data science is booming. I have a degree in data science, and I can attest first-hand how powerful it really is. It is the technology behind Claude, and ChatGPT. It's already revolutionized medicine ranging from imaging to genomics to precision medicine. It has even been used to develop an FDA-cleared algorithm that can detect diabetes-related blindness years before doctors are able to. Just imagine what it could do for us.

This leads me to why I am posting today. I have built a survey on my website-in-progress that is dedicated to sufferers of these conditions. The survey asks about background information (medical and demographic), symptoms, biomarkers, and attempted interventions. The goal is to identify subtypes of PSSD/PFS/PAS, to understand what interventions work/crash who and why, and frankly, to go viral in the bioinformatics field.

The survey will be published on Kaggle with zero personal identifying information (I only ask for an email and a first name to prevent accidental duplicates). Kaggle is the hub of data science which regularly hosts competitions and spotlights good datasets— some of which have millions of downloads. Every university student, researcher, or literally anyone who has dabbled in programming is familiar with it. Imagine how much exposure and rallying we could accomplish if we have a PSSD dataset on there? If the cookie crumbles in our favor, these conditions will go from being fringe and sidelined to being studied rigorously like Long Covid.

The benefit of this is really limitless, and the worst case scenario is that we learn something new about our condition. Unlike some of the other causes going around right now, this one doesn't require any money. It's low risk and high reward.

If you have a free moment today, please take the time to fill out my survey. I took a long time building it, and it would mean the world to me. You can find the survey here: https://www.postexposurefoundation.com/pef-project

Hi everyone! 👋

I have been struggling with PSSD and PFS-spectrum issues since I was fourteen years old as well as, so about a decade now. I try to stay proactive in letting you all know about any updates I have with my attempts to treat this condition. Unfortunately, I don't have the cure, but recently I've been thinking a little bit outside of the box.

Whenever I feel desperate, I tend to "knock on doors". This means sending emails to experts, getting on the waitlist for clinics, and so forth. Lately, an idea came to me that could open doors for all of us as a community.

I thought to myself, what if there was a unified database with info about PSSD patients that we could analyze? Nowadays, data science is booming. I have a degree in data science, and I can attest first-hand how powerful it really is. It is the technology behind Claude, and ChatGPT. It's already revolutionized medicine ranging from imaging to genomics to precision medicine. It has even been used to develop an FDA-cleared algorithm that can detect diabetes-related blindness years before doctors are able to. Just imagine what it could do for us.

This leads me to why I am posting today. I have built a survey on my website-in-progress that is dedicated to us. The survey asks about background information (medical and demographic), symptoms, biomarkers, and attempted interventions. The goal is to identify subtypes of PSSD/PFS, to understand what interventions work/crash who and why, and frankly, to go viral in the bioinformatics field.

I believe that my work is directly relevant to the work that Dr. Powers is doing— the data collected includes an option to report Dutch Test results (among many others). The final results will be publicly available and can help support the metabolite theory and point us further in the right direction.

The survey's data will be published on Kaggle with zero personal identifying information (I only ask for an email and a first name to prevent accidental duplicates). Kaggle is the hub of data science which regularly hosts competitions and spotlights good datasets— some of which have millions of downloads. Every university student, researcher, or literally anyone who has dabbled in programming is familiar with it. Imagine how much exposure and rallying we could accomplish if we have a PFS/PSSD/PAS dataset on there? If the cookie crumbles in our favor, our condition would go from being fringe and sidelined to being studied rigorously like Long Covid.

The benefit of this is really limitless, and the worst case scenario is that we learn something new about our condition. Unlike some of the other causes going around right now, this one doesn't require any money. It's low risk and high reward.

If you have a free moment today, please take the time to fill out my survey. I took a long time building it, and it would mean the world to me. You can find the survey here: https://www.postexposurefoundation.com/pef-project

Hi everyone! 👋

I have been struggling with PSSD and PFS-spectrum issues since I was fourteen years old as well as, so about a decade now. I try to stay proactive in letting you all know about any updates I have with my attempts to treat this condition. Unfortunately, I don't have the cure, but recently I've been thinking a little bit outside of the box.

Whenever I feel desperate, I tend to "knock on doors". This means sending emails to experts, getting on the waitlist for clinics, and so forth. Lately, an idea came to me that could open doors for all of us as a community.

I thought to myself, what if there was a unified database with info about PSSD patients that we could analyze? Nowadays, data science is booming. I have a degree in data science, and I can attest first-hand how powerful it really is. It is the technology behind Claude, and ChatGPT. It's already revolutionized medicine ranging from imaging to genomics to precision medicine. It has even been used to develop an FDA-cleared algorithm that can detect diabetes-related blindness years before doctors are able to. Just imagine what it could do for us.

This leads me to why I am posting today. I have built a survey on my website-in-progress that is dedicated to us. The survey asks about background information (medical and demographic), symptoms, biomarkers, and attempted interventions. The goal is to identify subtypes of PSSD/PFS, to understand what interventions work/crash who and why, and frankly, to go viral in the bioinformatics field.

The survey will be published on Kaggle with zero personal identifying information (I only ask for an email and a first name to prevent accidental duplicates). Kaggle is the hub of data science which regularly hosts competitions and spotlights good datasets— some of which have millions of downloads. Every university student, researcher, or literally anyone who has dabbled in programming is familiar with it. Imagine how much exposure and rallying we could accomplish if we have a PSSD dataset on there? If the cookie crumbles in our favor, our condition would go from being fringe and sidelined to being studied rigorously like Long Covid.

The benefit of this is really limitless, and the worst case scenario is that we learn something new about our condition. Unlike some of the other causes going around right now, this one doesn't require any money. It's low risk and high reward.

If you have a free moment today, please take the time to fill out my survey. I took a long time building it, and it would mean the world to me. You can find the survey here: https://www.postexposurefoundation.com/pef-project

Hey all,

Just coming in to report that I did a pretty thorough trial of Dexamethasone IV (40mg x 4) as well as Prednisone (30mg for a 4 days, then 20mg for 4 days, and so forth). I can't say it moved the needle much for me. I did have a crash in the middle where I was totally numb down there, like the bottom of my heel honestly, but then it went back to baseline. Maybe that shows there is some sort of immune involvement here, but I'm not sure.

I had some side effects like feeling zombied out, numb, and my POTS/dysautonomia got worse for sure just like it did after plasmapheresis. I know others have seen success with it though. I hope that medicine will notice us soon.

Hey All,

I recently finished a day shadowing the radiography dept. at my local hospital. I spent a few hours with X-ray, MRI, Nuc. Med, and in the OR, ER & ICU. I am really drawn to this field because I find it interesting and stable. However, I find it really daunting. I am currently taking pre-reqs to enter a program in the aforementioned modalities– hopefully MRI. I had a few questions I wanted to ask you all,

For starters, MRI can be super dangerous for people who have metal implants or accessories. How do you make it through each day without killing/hurting anyone by mistake? This is honestly my #1 fear with Nuc. Med/MRI. One clumsy mistake can end someone else's life and ruin mine.

Second, I didn't realize how integral proficiency in IV insertion is for this field until I shadowed. How is the skill curve with that? Do some people never really get the hang of it?

Furthermore, everyone has off days where they're extremely tired, groggy, or brain fogged. How do you make sure that you are on-top of your shit during such days?

Lastly, how long did it take you to feel competent as an MRI tech? How long for that stress of the job to simmer and stabilize?

I wish I had asked these while shadowing, but hindsight 20/20 as they say! I appreciate all and every response here. Thanks!

I am meeting with my PCP in a few days to discuss with him what I’ve found (GPCR antibodies, commercial antibody panel, covid viral reservoir, etc.). Im in the process of brainstorming what tests to ask for, and im hoping to take tests that are clinically validated (i.e, lead to some sort of treatment options covered by insurance).

I’m particularly focused on the immune system since that’s where I’m finding most abnormalities and success in treatment. Does anyone have any suggestions?

I am meeting with my PCP in a few days to discuss with him what I’ve found (GPCR antibodies, commercial antibody panel, covid viral reservoir, etc.). Im in the process of brainstorming what tests to ask for, and im hoping to take tests that are clinically validated (i.e, lead to some sort of treatment options covered by insurance).

I’m particularly focused on the immune system since that’s where I’m finding most abnormalities and success in treatment. Does anyone have any suggestions?

hey all,

I am in a particularly unlucky spot with a PSSD and Long Covid dual diagnosis. Through lots of interaction to others in the community, I realized there is a lot of overlap between the two conditions. I wanted to ask if anyone here also suffers from sexual dysfunction and profound anhedonia? Ive been stuck like this since 2020, and it’s really screwed up with my development since I’m 24. The last time I felt relatively healthy was 11th grade.