LazarusRy's PFS journey

Laz this makes me so happy to read dude I can’t even tell you. You are the definition of a warrior and for you to finally see some relief and organic improvement is so inspiring. You have truly helped me man and many others on this board I couldn’t be more happy for you. you are so deserving of this relief. Praying and cheering for you bro always :heart:

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Thought I’d share another update

Unfortunately since May things have continued to slowly deteriorate.

I became increasingly reactive to exercise and believe I developed (PEM) something very common in the CFS community. it has also been often reported on here . I believe cortisol sensitivity is a key player.

The allergic reactions to almost everything has continued to worsen, I’d get beaten down by brain fog, anxiety, irritability, skin reactions, facial eczema, terrible gut, back pains, global inflammation, bone pain, blurred vision, freezing cold etc. While my diet remained as safe as it can be for us I decided to change up a few things to try to get some abatement. Meat has been off the menu for a long time but I thought I’d give carnivore another try. After a few days everything improved. My physique returned, mood, clear vision, but into the 2nd week I crashed, my skin turned to powder, legs flaking all over, discharge in the eyes and everything else. The liver can no longer deal with animal protein/oils. Allergies were through the roof too. One thing, beard hair returned to brisslee from the pfs soft state and has remained so. A sign that something changed on the Androgen front. I’d hoped to cycle carnivore to try to stimulate, shock the receptors.

To tackle the allergies digestive problems and hopefully some of the other issues I decided to try the bean protocol (look it up). I normally react to most so went for black beans, low sugar 24 hour soaked as a trial I realise these are mild 5aris but what do you do when things are so bad!!! While on them (months) my overall baseline improved, allergies reduced, absorption was better(theyre high in butyrate), wider symptoms seemed to slightly reduce.

In the interim I had a biome test which showed very low butyrate (Leaky gut) zero lactobacillus, biffidus. I also came back with low levels of all B vitamins (despite consuming B rich foods) lactose and gluten intolerance too. None of this was picked up via bloods. This shows how damaged our biomes are and similar results have been reported by others. Low levels of these alone can cause chaos to ones general health. Unfortunately supplementation isn’t an option for pfs sufferers. Restoring this is extremely difficult. Some seem to have got better with fasting. Which I’ve now been doing for 2 years.

Then after a number of months I started react to the beans, dopamine, cortisol, 5ari sensitivity started to ramp up, excessive dark urine (a constant issue) became worse, upon eating anything I’d pee loads of very dark urine, allergies getting worse, skin breaking out etc etc, becoming very weak, collagen loss, teeth pain, gum recession, sunken eyes, feeling like I’d pass out, cramping, etc.

On the back of a recommendation i moved to Dynamic Neural Retraining (DNR) which looked safe, it’s been hailed as a cure for many none responsive conditions, often caused by toxins (pharma drugs, pesticides chemicals ) resulting in Limbic Disfunction ie a huge reaction and the brain gets stuck in fight and flight and starts to see everything as rogue including organs, tissue, etc lAfter settling into the protocol I experienced a dramatic shift in the pfs sick state. I was going through the mantra and suddenly felt physically strong, my mind cleared, vision returned, anxiety lifted, body became warm, I felt normal, that night I slept through, had a positive dream, woke to wood and refreshed, positive thoughts, it was amazing to feel normal. Once again it fell away but the founder states that recoveries can be gradual, up and down so i stuck with it. Then after a few more weeks I started to notice an increase in tinnitus (usually a worrying sign) then it was followed by crushing jaw, facial pain . Like nothing ive encountered. I was rocking with the pain. After a few hours it wore off. Over the course of the following weeks and months it has only got worse, facial pain every time I try to engage positive thinking, urination very bad, dehydration, nightmares every night, food sensitivities through the roof, anxiety, suicidal thoughts, irritability all elevated, skin issues, flaking, dryness, inflammation in the colon, siezed bowel, further weight loss. My jaw line has receded further, limbs, hands and feet are skeletal like. I’ve also developed an erratic resting heart beat oscillating between 40 to 190 within seconds while doing nothing. Getting a 24hour monitor from the NHS early Jan (we know of a few celebs on fin who dropped dead from an out of nowhere heart attack) DNR is designed to rewire the brain and build new neural pathways and like most things in theory should work but i think its actually caused further damage to the hypothalamus (which fin nuked) resulting in greater autonomic disfunction and further heightened sensitivity to cortisol. Even a short walk is resulting in severe fall out, same with eating, any sort of activity, the stress response has become much worse. Tinnitus has also increased - a sign of brain inflammation, ears are popping too.

It’s worth noting that I lso tried iodine and oxbile to help with the gut issues but both had a bad effect after a very brief upturn. I continue with enemas to relieve the build up of waste.

I also tried a Hyperbaric chamber, same out turn. Uplift, then crash.

I don’t know where to go from here I’ve just got to hope it’s not a new baseline. Once more I look so ill, frail, old , tortured by the constant anhedonia, anxiety, suicidal ideation etc then all of the physical stuff, the colon, bowel, global inflammation and allergies being very troubling too.

The skin, tissue is very loose and stretchy like Hippydoofs and his description likening it to throwing a sheet over a clothes horse is bang on. There’s no density anywhere, feel the bones with the slightest of touches.

Anyways I hope this is of some use to you guys, its worth noting some of the above may help, especially the bean protocol.
Those with repeated finasteride exposure , “there are a few of us”, are the ones that seem to negatively react to everything while progressively getting worse regardless of interventions.

As a side its hard to believe that were still treated like we have some sort of mental condition by almost everyone, As others have said it feels humiliating, and like an act of betrayal, considering the literature is out there supporting it all. Yet despite this were silenced, challenged, trivialised and stigmatised. No wonder many of us have no choice but to retreat. A few new sufferers have voiced their experiences of this recently. This has to change!!!

However it Says it all when the victims are left to fund the science. This cuts across the other groups of innocents who’ve had their lives destroyed by pharma drugs. One day this will be seen as a very dark chapter, indictment of what man and society is unashamedly capable of. Willfull ignorance at every turn!

Things have been that bad recently that I was sitting in a cemetery alone in the dark on Christmas eve praying for help and asking for an end to this, then spent most of the following day in bed in severe pain with only shallow breathing drunk with anxiety, unable to think straight. I thought, even hoped I was on my way. (Some will relate)

I just hope and pray better days lie ahead. Apologies for the downbeat post I always try to offer up hope. DONT assume you’ll end up on the same path as me, repeated and length if exposure is what has brought me to this point. M stones post nails it.

I don’t know how I re enter into this daily, I constantly feel like I’ve been thrown infront of an armoured truck while being attacked.

Some say the greater the suffering the closer u get to God. That being the case we are in his presence. You know I have faith, its brought light to me in the darkest of moments. God listens without challenge, comforts when sought and he will step in when the time is right, i believe this. God bless us all.

The Devil saw me on my knees and thought he’d won.

Until I said Amen :pray:

Kindest

Laz

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Bro I could cry. You are an iron willed warrior. What a brutal fate has been leveled against us but we March on. All we can hope is to find something long term that these brief upturns reveal. There is a way to swing this back. Look at the pic I just posted 1 week apart. Absolute insanity. There are answers man and we are getting closer. I am in an extremely bad way today all gone to hell. Right here with you bro. Thank you for sharing. Better days ahead bro for us all

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thanks for the update bro. and I’m sorry.

I don’t know if u ever tried the AIP dirt but it seems it would be beneficial to you. that + increasing fermented foods, maybe.

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Thanks @gomesemog, I can’t tolerate fermented foods theyre 5aris and have been doing AIP because of the allergies in an around about way for a long time. Thanks though my friend

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The last few weeks have been particularly brutal. This disease has a canny way of pulling u further down than you think is possible. Skin lesions like Aids, further deterioration, emotionally lower than ever, eratic, irritable, nightmares, screaming tinnitus, allergic reactions to everything, pain everywher, weaker than piss, looking like someone 20 years my senior with bulimia, mal absorbtion, resulting in global cellular death. Unbearable trying to hide this all the time for fear of further invalidation from everyone (exhausting and upsetting).

I’ve held back doing a Will as not having one stopped me from allowing my mind to accept the inevitable. At least I get to have the final say in this. With pfs I became a nothing, an outcast to everyone, even those who I thought loved me. They weren’t interested in understanding pfs at all. I hope I can forgive them on my journey home.

So after all this time it feels like I have no choice but to yield to this suffering. As said in the past I’ll mark out an amount for the cause.

DONT ever see this as your destiny. Every one on here has a lot more fin to take and many more years to catch me up So hang on in there you’ll all get your lives back.

Please don’t post please dont reach out, some on here have been my shoulder at times. I’ll never forget you. I’ll take your leave gentlemen (thats what you all are) . I now have some thinking and planning to do.

Please inform the MHRA when I’m gone.

Finasreride took my life nothing else. Inform the papers too and strive for a frank write up.none of this depressed bullshit.

Its been one hell of a ride, unfortunately not one that i was warned about. Not once!!! There were many missed opportunities.

I hope all of those involved pay a heavy price one day for what theyve done to so many innocent lives…cruely and needlessly destroyed, for what… corporate greed

If my son comes looking for me on here tell him how hard I fought. I think he knows.

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I just don’t know what to say。。

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Only thing that gets me through those moments is tramadol… the doom subsides long enough until next time…which is really what we are doing is buying time…I’ve taken two a day for years or would done be dead…

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Well after the worst fears I just ain’t got the balls, I’m a coward, the worst possible existence (beyond comprehension) remains more favourable than snuffing out my own life.

I appreciate the kindness from everyone.

I am going to low profile it for a while (ive said that before too) to try to reach some sort of stable line

Sorry for the worry guys, u are family to me the only ones who relate/understand any of this.

You’ll have to put up with me for a while longer. God willing.

:heart:

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:heart:

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:heart::heart::heart:

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Hang in there my friend !

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I was tempted to reach out earlier but bit my tongue when I read this:

So I complied with the request. I was a little disappointed that others disregarded the request for whatever reason. I am sure they had good intentions though. Now that the request appears to have been waived, I am showing my support.

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It’s almost always better to let each other know that we care when the chips are down, imo.

Ryan’s an absolute legend in my opinion, there’s not a lot I can do to help right now, I know it and he does too, but I absolutely had to send a message anyway.

Would recommend everyone tries to support one another here. We all need it.

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Candida and pathogens taking hold, white thick phlem, crust on face, jello coming out when going to toilet, fungal nails infections huge haemorrhoids that came on a few months ago, looks like a baboons arse, sand coloured ribboned stools, more weight loss, jaw and limbs thinning further, allergies and food intolerances are very bad. Cracks appearing on ankles now too. Piss frequent and like tea. Was at hospital wednesday for RA check up urine showed high levels of ketones and trace protein. Nurse asked if I had diabetes. (Bloods don’t show anything diabetic related) but its very concering as is all of this. A new Dr saw me (read my notes) and said he knew about pfs and said its a real problem. He was aghast at the changes when I showed him photos from just a few years ago. CRP has recently climbed as been off rheum drugs for 13 weeks in the hope candida would recede. Inflammation/crp is colon related and not RA. They talked antibiotics and various antifungal drugs which I initially declined. They then came up with nystatin which I’ve reluctantly started. My biome is fucked no lactobacillus, biffidus and v low butyrate which leaves me at the mercy of these invaders. Tinnitus screaming from the 1st day of use, feel some increase in androgens (oily nose) but also extremely giddy, suicidal and self harming urges along with constant nightmares arythmia Iis becoming more frequent and chronic inflammation is very apparent/painful, trigger finger has returned and swollen knuckles, elbows come on as soon as i eat , guts are a complete mess., limited absorbtion/nutrition, hot gas, groaning and abdominal, back pain, red skin stains on ankles and feet "liver’ New lows just getting this recorded.

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@LazarusRy
My friend, you have endured such trials. Thanks for being here. Jim

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This is what it came too in the end.

My mind was ravaged aswell i no longer recognised myself Nothing on Earth compares to the potential ruthlessness and destruction that this causes. Nothing in my life was left untouched

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Fucking brutal. My limbs are headed in that direction, I can’t even look anymore.

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This disease is just incomprehensible

Lazarus have you ever tried DHT treatment or was it ever suggested to you by your Endo?

Have you ever had your DHT levels tested?

I know you describe collagen loss on your face as invisible thumb prints and how certain foods can suddenly make a new dent appear

I experience this and wonder should some day I try DHT eventually as I know anti DHT food makes me worse

Stay strong mate

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@LazarusRy I have no words you haven’t heard before, but know I pray for you.

Also, did you have gastroparesis? This article suggests using erythromycin, in case it is new to you. Jim