I think PFS is an autoimmune disorder

General Discussion
#324

Good thread

One thing I have always wondered about when it comes to PFS and autoimmune connections is that why haven’t we seen more evidence of abnormal autoimmune responses in our bodies. In other words MS is auto immune and MS patients have lesions on their brain seen on MRI. IBD is autoimmune and IBD patients have lesions on the inside of their intestines seen on colonoscopy. I think my point is that in my opinion it would take a very serious auto immune disease to cause side effects this severe which would show in some obvious way such as the examples I mentioned. The idea that over active immune systems can attack hormones in your blood is interesting. But thinking it through doesn’t over active immune systems usually target tissue and organs. Still interesting though. I’m still sold on on it being a combo of neurotransmitter/neurosteriod imbalance and in ability to regulate or respond to hormones. But still interesting. I’m guessing that if an over active immune system was targeting androgens the immune system would need to “attack” the DHT or testosterone before it binds to the AR receptors. I don’t know just a thought on how this would need to be happening in practical terms. I’m not sold on the testicular shrinkage and jaw like shrinkage being enough evidence in of it self of immune system attacking healthy tissue

I would think that this theory could be easily tested in more people though by trialing immune suppressants. I just went back on l-tryptophan, 5-HTP vitamin B6 for the 5th time now and seen a major improvement in my constant unbearable constipation. So if my over active immune system was making it so I can’t poop properly then why would taking these supplements have any impact. They don’t do anything to the immune system

#325

I hope you will find your way and stop any further degeneration of your body. You deserve it.

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#326

Have you noticed the effect lasting even now?

#327

@5-alpha-victim I have 3 tumours on my liver which in my opinion are as a result of long term destructive PFS. Not many on here get a lot of in depth testing outside of hormonal profiles because Drs shut the door at the earliest opportunity. I expect there are a few more with undetected damage. Many have gum and wider soft tissue loss. AI diseases generally have different levels of severity so will display more than others. I always find your posts and theories of great interest and consider everything.

Anyway to the reason for this post. I’ve had an absolute explosion in symptoms these last few days. Night sweats and gum inflammation. extreme anxiety and suicidal ideation. Was driving around yesterday looking for somewhere to end this suffering. All other symptoms were on a high too I just couldn’t take anymore but fear of the end “as usual” stops me. I retreated to bed to try to wait the worst of it out. I retraced my steps then realised it was because of the dermal filler I had three days ago. I had a smaller amount two weeks ago when I had a lesser reaction. This says to me that this is AI more than ever. As said earlier I’m not on any AI drugs which is possibly why I’m at the mercy of such severe symptoms. The drug I was on previously must have kept them at bay to a degree It’s worth noting the initial PFS crash is like the onset of an IA disease, as in the reaction from the immune system, things settle to a degree and then flare up via triggers if left untreated. There are quite a few on here who already have IA problems or family members with such a disease. My night sweats had all but subsided these last few years via food elimination i would only get a mild one from chicken, then this! The bed has been soaked three conseq nights. Again as said before we don’t get any ears so immune suppressors haven’t been tried. These would not cure the condition but I believe t would dampen down the activity sufficiently enough to bring forward a marked improvement. There have been two reported cases of guys getting better from prednisolone type drugs for unrelated problems these are often standard as first line treatments to bring down AI flare ups. The AI route would make for an interesting exploration . Additionally not many get colds or flu and for the few that do they often get a reprieve. “Not in every case I know”

#328

Working on fixing microbiome dysbiosis proved to be such a lengthy process (talking months here rather than weeks), at least in my case. Probiotics like the one I mentioned coupled with intermittent fasting and solid diet plan all seem to help speed up the process. Regarding your question, it’s a food sourced probiotic strain so it’s unlikely to stick around for long after discontinuation and yes I feel I’m overally better after than before.

#329

Couldn’t have said it any better myself. I’m terribly sorry you had suicide ideation but keep hanging bro! I have ZERO doubt that immune system is a KEY player in this turmoil. Like you, I had tracked down my worst periods and dermal fillers were among the suspects. It takes me about 2 months to go back to baseline after getting dermal filler. Vitamin C and anti-inflammatory diet and omega 3 can prove helpful.

I was on corticosteroids for years and was fine but I went off them in 2017 and demons from hell broke loose. I advocate corticosteroids short to medium term but never longterm. They lead to adrenal suppression and withdrawal symptoms. The strategy that seems to work is to heal the immune system. One should get out comprehensive tests and apply seek & destroy strategy for any immune system triggers. These include:

  • hidden infections
  • foreign materials implanted and fillers
  • inflammatory foods
  • cancer/tumors
  • IBS/IBD

I had mercury fillings removed, titanium screws removed, and left over stitches from previous surgery removed. Then I attacked the gut since it holds up to 70% of the immune system. Leaky gut can cause endotoxins from gram negative bacteria to reach circulation and trigger immune system inflammation. Newer studies also links endotoxins to low testosterone and excess inflammation to anxiety/depression.

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#330

Sorry to hear about things getting worse for you

Unless you want to test the auto immune theory at it’s source and take immune suppressant’s including Pred as an option I guess all you can do is just continue to treat each specific symptoms.

I get the gum inflammation. I brush my gums with an electrical tooth brush the correct way for about 15 min per day. It helps relieve it tremendously. My constipation is so bad (when I don’t constantly do the right things to treat it) that the straining herniated my disk in my lower back. A couple of years ago a doctor gave me a prescription of methlyprednisolone (the stronger of the types) to treat the horrible back and leg pain from from the disk injury/ tissue compressing the nerve. I got back surgery and most of the back pain is gone now and I never took the methlypred prescription and still have it actually. Maybe I’ll trial it just for the hell of it and report back on this thread. If I trial it I’ll wait until after I get my second Covid shot in three weeks.

Have you had the liver biopsy on the tumors ?

I had the Colonoscopy 4 years ago which showed no evidence of AI induced IBD or crones disease. I have also had a couple of cat scans and ultrasounds and no evidence of AI damage. But AI could take time to damage tissue or organs so you never know. I’m getting another colonoscopy in the near future to look for IBD again. My mother has a mild AI disease that never caused any major problems. So I guess genetically I’m predisposed to AI. Still though what kind of AI disease would make me suffer from gut paralysis and cause the PFS type sexual sides. I also think that it takes a lot of time for an abnormal auto immune response to eat and attack tissue. So the initial PFS crash that we all got when we lost lean muscle practically over night and some lost the jaw line and tissue in their face over night. I think we are talking a new class of AI disease that could do that as fast as we experienced if our immune systems attached our bodies like that .but as we learned the hard way anything is possible

What is the dermal filler that you think sparked the AI response ? Why are you taking that specifically? Is a dermal filler just something that’s in a supplement you are taking for something else ?

Hang in there brother

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#331

Where did the idea that PFS leads to tumors come from? That kind of paranoid thinking makes us look like hypochondriacs

#332

Hi @LazarusRy,

I’d ask how you’re doing but, your message doesn’t really leave much room for immagination.

I’m sorry you’re going through all this mess.

I have no clue about what causes this disease. But I see you are a big believer of the AI theory, and since I do believe gut plays a large role in this inhuman condition, let me ask you if you considered Microbiome Transplant.

According to a study on the British Journal of Medicine, Fecal Material Transplant (or Microbiome Transplant) is able to stop and in some cases reverse the symptoms of Multiple Sclerosis, which at thi point in time is believed to be an AI condition.

Plus, if you google around (especially on Reddit), you’ll find report of people being “mistakenly” cured by mental illnesses after undergoing FMT.

Again, I have no clue about the PFS roots. There are probably many.

But there is a report on PSSD lab posted by a guy who claimed to be fully recovered after undergoing several FMTs.

The process seems to be virtually side free when screeening the donor correctly.

I mean, it’s probably worth a shot in my opinion.

Hugs.

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#333

@acne1776 PFS makes us more prone to tumours it’s in one of the scientific papers, I’ve also had testiclar cancer which developed 6 years into finasteride. Another paper states were more prone to liver disease. My lifestyle was exceptional so why did I develop liver tumours. The type I have is apparently common in women with long standing estrogen problems. Those sums add up to me but I know how it looks on face value @5-alpha-victim I was on immune suppresents for years which is what I think held back the full wave of Pfs. I’m not on them now because my rheum symptoms are in check “androgens cause disease activity” my gum loss isn’t through hygiene it’s simply soft tissue degeneration which my dental surgeon is bought into. I had dermal fillers to plump out the collagen loss on one side of my face which is significant and appeared virtually overnight in line with the muscle, subcontaneous fat loss etc. It was ike a switch and many commented on the physical changes. It’s hyaluronic acid which is injected into the face. I’m waiting on biopsies. I also had a gastroscopy where they took 5 biopsies, waiting on those results. I also lost my jaw line in very short space of time along with the development of loose skin, food intolerances and bone pain. These all landed approx 3, 4 years ago, 17 years into pfs. Prior to this it was mainly ED and cognitive sides. Your back and constipation troubles sound really tough. I’m sorry to read this… I’m seeing my rheum proff again in a couple of weeks and I’m going to ask for a diff drug. I’ll gauge his reaction to see if he’ll give me pred in the meantime. I wish I all the best bro.

#334

He’s saying that the tumors on his liver may be evidence of an auto immune response on his liver .

That point was made in response to my point about it being my opinion that if I had an auto immune response responsible for these symptoms then I think some of my diagnostic testing would have found evidence of tissue or organ damage due to immune system attacking things it’s not supposed to attack

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#335

During my first colonoscopy 4 years ago I had a couple pre cancerous polyps removed from my colon. So now I need to have a colonoscopy every 5 years because of that finding alone. I find it helpful to have routine colonoscopy’s anyway just because of all the PFS induced constipation I get.

I do get gum recession and my dentist says I have a couple nerves exposed that are sensitive to touch. Everything looks clean and my teeth are healthy it’s just that in a couple spots the gum recession is low enough to expose the nerve a little . A couple of dentists have told me that this looks something more Like we see in 50 year olds not 36 year olds . Still though the high level time consuming gum care routine I do stops the gum discomfort and bleeding and slows down the recession in my case. So for me I don’t know why my gums did this and it does not appear to be lack of gum care because even prior to the recession I cared for my gums as much as an average person would. My gut feeling for me though it has nothing to do with PFS or AI in my case. Just my gut feeling

My face did get a little skinner due to PFS and I got the hollow eye look a little that mostly resolved . So I did not get those moderate to severe facial changes

PFS blows . Sorry to hear about this BS and what you have gone through

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#336

I may have sent an ambiguous message. I’ll try and explain it better. We started off without issues (pre-fin/pre-pfs) and took fin that resulted in hormonal changes/shifts that led to some sort of immune system dysfunction leading to excess inflammation, which is manifested (according to newer studies) as myriad of AI symptoms including anxiety, depression, fatigue, low libido, brain fog, PEM, etc etc etc.

I was trying to make a point that one should look for all possible sources of inflammation even in the case of undiagnosed cancer/tumors (not saying that fin caused them).

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#337

U may be onto something with the leaky gut

I plan on exploring this further in my case

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#338

Ah ok that makes much more sense. I appreciate the explanation

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#339

This is a good read

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#340

@doomed80 were on the same page. I, like many also have mercury fillings which I plan to get removed. I also have plates in my wrist as well as a knee replacement courtesy of RA which I expect could be leaking something in to my body. Two months is a long time to return to baseline from fillers. Fortunately today hasn’t been as bad so hopefully my return will be somewhat quicker. I still need to have more though. Rock and a hard place!!! Thanks for the tips but I can longer take vit c or omega 3. I developed an intolerance @TFD I believe because of my years worth of AI experience/understanding and even more so that if it’s true we can get out of this, part of it could be wishful thinking but we need something to hang onto, most of it does stack up/point to this as a major player. I researched FMT a few years ago. It was going to cost 3k which is a lot of money to get someone else’s shit pumped into you lol but it the grand scheme it’s peanuts if it scales back this hell. I spoke to a consultant and he advised me it is very dangerous and unproven, for that reason I stepped back. During desperate times it resurfaces in my mind. I’ll keep it on the radar thanks mate @5-alpha-victim I was also told my gums were healthy and disease free. 3 years ago I had dense coverage but have since lost a full centimetre across the full top and bottom line as well as the development of a deeper roof. Some guys get partial recession only. There a paper supporting this issue in PFS. My guess is thats where it lies. One or two thers also recovered from a temp loss of facial features. How long is it since you first took fin?

#341

FMT dangerous? Really?

The ony risks I heard about were parasytes trasmission and weight gain.

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#342

I vaguely recall him saying benefits haven’t been proven, disease transfer is possible, donors are risky ie not always screened , it’s not regulated or approved.

#343

The same way Fin was proven to be safe? :slight_smile:

I hope you’ll recover.

I’m not much of a religious person, but I hope your faith will lead you to a total turnaround.

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