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
Kindest
Laz