I'm convinced it's autoimmunity

Also, some autoimmune conditions require an insane amount of immunosuppressants, one that comes to mind is autoimmune myopathy from statins (hmgcr antibodies) often requiring high dosage and multiple different types of immunosuppressants

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@Bigpoppa10040 when I was younger they tried many different autoimmune drugs to get my rheum under control so it certainly isnā€™t a one shoe fits all. Having fucked androgens has been the best thing for it but unfortunately everything has been smashed!!! Chemo would bring PFS to boot as it wipes out the immune system

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Iā€™m interested in this topic and subject as well. All my plan to recover in fact resumes in optimizing adrenals, rebalancing gut and reducing inflammation (this one Iā€™m put a lot of my bets).

But I have a doubt, is inflammation the same as autoimmunity?

@gomesemog inflammation is a consequence of auto. In answer to your question id say yes

OR modulate the gut microbiome in such a way the anti-inflammatory cytokines > inflammatory cytokines. This is what Iā€™ve been trying to accomplish in the past year. Iā€™ve been getting more good days with normal libido and wellbeing as I get closer to a more balanced microbiome. I too didnā€™t get flu since many years! However, I get other increased inflammation symptoms such as tinnitus, skin rash, chest tightness/pressure, sensitivity to foods, etc.

@nasa01

I suffer from eczema and have done since I was a baby. Eczema is largely autoimmune and I use topical immunosuppressants when I get flares of eczema (which also may help my PFS, a lot of my good days have been after using my cream). Since starting my elimination diet, my eczema is starting to improve and my skin is looking less inflamed. Iā€™ve had a decent amount of good days PFS-wise since the new year (less so today unfortunately) but Iā€™m hoping to see long term improvements in this area too.
It all points to the to the same source, Iā€™ve always had autoimmune issues and PFS just compounded them and gave me sexual sides too.

What is the medication, what are your symptoms? And how do I get my hands on it

@doomed80 what have you been doing to settle things down?

Ive posted this before, I think immune suppression could be much more dangerous or detrimental, it could go hand in hand with the tissue coldness that some feel. Not sure.
Example,
PFS is something the body is not fighting effectively.
Some think acne is an overactive immune system to begin with,
same with allergies and I think you had quite a few on here saying they no longer get allergies.
Or maybe they just cant sneeze as much, which can also be a defense mechanism.
Your sneezing to protect yourself etc.

Finasteride Enhances the Generation of Human Myeloid-Derived Suppressor Cells by Up-Regulating the COX2/PGE2 Pathway

Further development of FIN-like compounds could be a novel strategy for generating functional MDSCs for immunosuppressive therapies in various immune disorder conditions.

Selective serotonin reuptake inhibitors as a novel class of immunosuppressants

https://www.sciencedirect.com/science/article/pii/S1567576914000848

Immunosuppressive activity of 13-cis-retinoic acid and prevention of experimental autoimmune encephalomyelitis in rats

Systemic Isotretinoin Therapy Normalizes Exaggerated TLR-2-Mediated Innate Immune Responses in Acne Patients

https://www.sciencedirect.com/science/article/pii/S0022202X15358772

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Iā€™m being on AIP diet + probiotics + prebiotics touted to raise anti-inflammatory cytokines (e.g. IL-10) and others to reduce pro-inflammatory cytokines (e.g TNF-alpha, IL-1beta, IL-6*). Examples include L. Rhamnosus GG (raise IL-10) and Align (B. Infantis is said to reduce inflammation). Also on GOS prebiotic (Bimuno) and baking soda. I tried Colostrum and Zinc-Carnosine in the past and have mixed opinion about them. Getting a microbiome analysis is a good start.

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You make a plausible hypothesis. However, some people reported feeling better on corticosteroid and theyā€™re immune suppressive. I was on them in the past and was partially recovered. Anti-inflammatories such as vitamin c, zinc, baking soda and LDN also seem to produce favorable results for some. But I see where youā€™re coming from and thereā€™re explanations/citations to either propositions.

Do you have ED and Libido problem? and how itā€™s going on your protocole?

I had extremely low libido since 2017 and even prior to that. I tried almost every trick in the book (check my thread). I had many mini recoveries in 2018 and 2019 but they never lasted. Nowadays, Iā€™m much better and donā€™t suffer ED. Thereā€™re day to day variations but Iā€™m in a better place overall.

My advice:

Stop all supplements

Get bloods and get tested for hormones

Heal the gut. It all starts in the gut, I canā€™t say enough. I tried infinite tweaks and I can say with 100% confidence that improving the gut got me near full recovery. Itā€™s so difficult to recommend a certain diet or probiotic though because itā€™s really extremely individual. The microbiome is extremely unique for everyone.

Ask yourself these questions:

Do I have food sensitivities?
Do I have any IBS symptoms?
Do I get brain fog after meals?
Do I get regular BMs?
Do I get stomach aches?
Did I take any antibiotics in the past 3 years?
Do I feel better/worse with a certain diet?
Do I have any autoimmune diseases?
Did they ever diagnose me with IBD (e.g Crohnā€™s, UC)?
Did I ever get food poisoning in the past?
Did I get any viral infections?
Did I take pain killers long-term?
Do I have vitamins or mineral deficiencies?

If you answer ā€œyesā€ to any of the above. Then gut is likely a factor to consider.
@nasa01

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So is this a lifetime commitment? To stick to a strict diet for the rest of your life? I understand this greatly helps symptoms but it cannot be a cure, only treatment unless changing the diet temporarily is changing our physiology.

There is no cure for any autoimmune disease, so if this is an autoimmune disease we shouldnā€™t be expecting a cure

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There are different treatments depending on the ilness and sometimes it can be even reversed, or very much controled.

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I do not believe this theory of autoimmunity is logical. First, recovery of autoimmune diseases is not possible. This would mean that all of the recoveries of pfs cases cannot have happened. So they all would be lying. Second, it is possible to stop the progression of autoimmune diseases as is the case for example with rheumatoid arthritis. I saw a documentary on Dutch television (https://www.npostart.nl/dokters-van-morgen/09-12-2020/AT_2155793) lately where a girl became symptom free of hers in an experimental study, in which she could only eat vegan. She became completely pain and symptom free of her autoimmune disease. These researchers and also when you search on the internet state that eating meat is not a good thing for autoimmune diseases and on this forum everyone swears by it, even going carnivore. I have done vegan for a couple of years during my pfs and although I feel better because there is something wrong in the gut, I do not get symptom free at all. I believe if this was an autoimmune disease we would have many more cases of people getting back to their old selfs for periods of time. I have not become normal in any of the 8 years of pfs. Also, which part of body is getting attacked by the autoimmune disease? Lastly, most autoimmune diseases have things in common. Symptoms of early autoimmune disease are often the exact same as common illnesses, including: fatigue, fever, malaise, joint pain, and rash. https://en.wikipedia.org/wiki/Autoimmune_disease#:~:text=Symptoms%20of%20early%20autoimmune%20disease,is%20difficult%20for%20proper%20diagnosis. Although I can see some similarity, I would never describe my situation as a disease. I would rather describe it as something functional not working right, like I am handicapped/mutilated by finasteride. I also believe inflammation is also part of it but not caused by an autoimmune disease.

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You are wrong in many of your points my friend.

  1. A lot of people recovers from autoinmune disease. Thatā€™s a fact. However, there is not a ā€œmagicā€ or general cure since itā€™s a very complex disease. Also, there are s lot of different autoinmune illness and thenapproax to each one is different.
  2. Autoinmune diseases donā€™t have common symptoms at all. Please inform yourself a little bit before start talking. For example, some.people only have issues with their skin at thatā€™s it.
  3. Our issue it is not functional since thatā€™s the most easy thing to check and verify. Do you know how many trials we have done in total, for different experts doctors and countries around the world during years and years? If this was functional, we already knew.
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I mean this in a respectful way, but you are very wrong about many points you made. Iā€™m not the original poster but Iā€™ve seen threads get derailed quickly over the years with people who donā€™t agree with original post. If you donā€™t agree thatā€™s fine and respected but to keep the convo going I feel like people who believe this is autoimmune should post on this.

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Disagreeing with the OP is not derailing. @Pff is free to disagree. This is a discussion forum. If OP proposes certain explanations surrounding this condition, he should expect these explanations to be scrutinized.

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