Hormones regulate the microbiome and its response more than anything else. There have been people with PFS who have had up to 5 fecal transplants, with no results. However, I am also a firm believer in the autoimmune theory.
1 Like
I beg to disagree @Rb26dett Itās more like a two way street. I had witnessed this first-hand. My E2 was chronically low and I attempted everything under the deep blue sky to raise it yet to no avail. Surprisingly, taking a commercial probiotic for an irrelevant issue raised its level from 15 pg/ml to the upwards of 40 pg/ml.
Chronic antibiotics intake have the ability to nuke microbiome and lead to excess in certain bacteria and absence of others (i.e. dysbiosis). Similarly, thereāre numreous success FMT stories.
I completely agree, I suffered from other autoimmune symptoms prior to PFS, namely eczema and allergies. PFS just gave me low libido/ED on top of that.
Iām going to go on a strict autoimmune diet once I move into my own house in the new year, basically good quality meat, lots veg, fermented foods, and no dairy/gluten/sugar/processed foods/nightshades etc. Iām 90% confident I will be able to improve (and if not recover from) both my eczema/allergies and PFS.
1 Like
The itchy scalp along with hairloss may be a sign of Lichen Planopilaris. I had the same symptoms after accutane and thatās what I got diagnosed with. It is an autoimmune scarring hairloss. Apremilast is currently stopping it, ALONG with stopping all my brain fog and moderate depression. Just leads me to believe that all of this is a widespread autoimmune attack
1 Like
Good going Man. If your willing, try a go at apremelist. I may be able to give you a source if you want. A diet change is also very useful from what Iāve seen, and has been helping me. Iāve had to stay away from Gluten ever since accutane because accutane triggered an allergic reaction to Gluten (yet another autoimmune disease)
1 Like
I will firstly say that I did not and still do not have any sexual dysfunction or libido loss.
I took accutane about a year ago, and began to see rapid hairloss + an extremely itchy scalp 4 months in. This was not MPB given my hairline never went back, it was just rapid diffuse hairloss on my scalp and body (I was losing 500 hairs a day on my scalp for a 5 months).
Brain fog also came. Before accutane, I could not tell you what brain fog was, for I never experienced it. But now I had. I wonāt go into detail on this, but it was awful. Same with a terrible stint with depresssion.
I went to a derm mainly for the hairloss a few months ago, and she diagnosed me with Lichen Planopilaris. This is a scarring autoimmune hairloss. Scary stuff. I took the matter into my own hands and began trying different immunesuppressors/modulator. First, I tried tofacitinib. This did nothing. Second, I tried methylprednisolone. This immediately cleared up my brain fog and hairloss. I felt better than even before accutane. But this drug can not be taken long term.
My next drug I tried is apremelist, called Otezla in the USA. With a cost of $4k a month in the USA, itās necessary to purchase abroad, mainly Bangladesh or India.
Iāve been on this drug for 5 weeks, and the itching from my newly diagnosed Lichen Planopilaris is beginning to cease, along with the terrible shed. My brain is also going back to normal. This drug is mainly used for lichen planopilaris, as seen here- , but I was not surprised that it helped and treated my other PAS side effects this far.
Iāve been on apremelist for 5 weeks so far but I already know this is a game changer for me. I wouldnāt doubt this drug is the āanswerā for those with PFS and PAS, if this truly is an autoimmune disease.
1 Like
Yes me too ! I am losing tons of hair!
Iām not sure where I stand about this as a potential root cause but back in 2016 I had my stool tested and my level of gut inflammation was literally at the very top of the chart it couldnāt be measured any higher. Iāve been carnivore for 10 months now and I havenāt really improved from PFS much although I have been eating a surplus of pork rinds covered in hot sauce so I may have to cut those out in order to say Iām full carnivore. Iām also on the diet for schizoaffective disorder and I am pretty certain it has improved my symptoms in regards to that illness so I wonāt be coming off the diet anytime soon
This is interesting. I have diffuse hairloss (never diagnosed). Essentially the hairs come out with the ābulbā attached. It does not focus on one area, it is all over. It also happens on my eyebrows. It was never there until I took Accutane. My hair strands are also thinned out.
I read from other users this seems to be a common, long-lasting side effect. People seem to think it is an āall or nothingā thing - where, you either loose your hair whilst on Accutane, or you keep it all and everythingās cool. Not the case for a lot of people - you end up with a long-running process of shedding, where the hair bulb and hair strands fall out in diffuse locations.
A while back I read this is a particular type of hairloss not related to male pattern baldness. I have been living with this since age 17 and am now mid thirties. I basically consigned myself to gradually losing it all. It was not really a worry relative to brain fog and sexual sides, so it was low down my list of priorities. I have been thinking about shaving it all off.
I will spend some time reading about apremelist.
Have you tried a keto diet? It requires a lot of organisation, but it helped me recover from a bad flu case a few years ago. I couldnāt maintain the diet since it is so strict, but it seriously helped me out of a bad spot.
Nightshades were a real problem for me. My severe acne case wasnāt even stopped by Accutane. That is one of the most fucked up things. In the end I discovered it was largely down to nightshades, e.g. tomatoes, potatoes, bell pepper, etc. Bizarrely, oats are also a problem. Fuck knows why, I think it has something to do with lectins or something. Once I got rid of all those, the acne finally stopped. I used an elimination diet to figure out what was doing the damage. I havenāt eaten nightshades for about 6 or 7 years now. If I eat them, it literally switches the acne back on.
1 Like
Yeah tried keto for a little bit but couldnāt stop cheating on it.The carnivore diet is more restrictive and is seemingly / supposedly better for inflammation than the keto diet though. At least that seems to be a common belief in the carnivore community. Got rid of all the nightshade vegetables and all the sugar I was still eating. I had a hard time with the āketoā snacks that claim to only have around 3-4 grams of NET carbs but in actuality are still unhealthy for you by contributing artificial sweeteners and additives
1 Like
Just putting my two cents in here, Iāve been on the train that this is autoimmune as well. Have talked to numerous docs and well respected doctors and they all agree.
3 Likes
Thanks, appreciate the input. I think the autoimmune track should be more thoroughly investigated. I can already say that Otezla is helping me out a bunch. Figure we should just try a whole bunch of autoimmune meds to find out if any work
3 Likes
I start at a rare autoimmune disease specialist doctor on Jan 5th. Iām gonna get a wide range of blood and gut tests, and after he adjust to me medicine or supplements ,diet and lifestyle, probably with an approach to counter autoimmune reaction
He started to read through the latest PFS studies for me, he is well known to have improved peoples quality of life, especially for those with thyroid related autoimmune diseases.
It is gonna cost me shit tons of money, but perhaps I get one more super brain dealing with PFS and help to figure out what might help us.
Iāll keep you guys updated.
14 Likes
Good luck
1 Like
Maybe because Testosterone is a natural immunosuppresant and we have shut down androgen receptors, which means testosterone is doing nothing?
3 Likes
I also strongly belive pfs is autoinmune. I have posted several times about it. My experience:
- I have suffered alopeacia areata (autoinmune disease) right at the same time than pfs crash.
- I took corticoids in order to improve my alopeacia areata, and it gave me some relief on pfs symptons. My evolution was quite good after taking the medication, and i got 80-90% of recovery (hard to say a number).
- When crash, PFS hits from one day to another. It also happens with autoinmune diseases.
5 Likes
This is very interesting, curious to hear more when you have more info on your process.
1 Like
Sure, iāll let u guys know in my, and in this thread.
I thought most of us do an attempt at endocrin or urologist doctors, what if thyroid/autoimmune specialist could improve our qualitiy of life better? So i chose to spend tonns of money at such specialist
To me the most credible scientific studies about pfs tell, it is something like an autoimmune reaction against our own androgens in our bodies after their return to more sensitive andrigen receptors
2 Likes