LazarusRy's PFS journey

Although I don’t have any indentations, I can see our skin had the same “texture”.

2 Likes

I had another colonic irrigation on Monday. As expected the procedure wasn’t as traumatic on the body as the last one. Ive had the same after effects as last time. I’ve since gone into a period of autography via the initiation of a 48 hour dry fast in the hope it brings some restbite from the symptoms. Ramaxifin did seem to help I was able to broaden my food intake and felt periods of weight in my dick and even my muscles . I also had moments when the anhedonia etc wouldn’t be as bad however it brought on a chest infection and resurgence of fungal nail and skin infections.
The jak inhibitor had similar effects but also suppressed the extreme bone pain to a degree. Ive since stopped that and will use it adhoc as heart arithymia has resurfaced.
I feel very weak but I keep faith that I will get out of this the spark of recovery is not lost I hold hope of a system reset one day… Keep faith :pray:
.

8 Likes

Dear Ryan…

your so silent over the last weeks. What’s going on with you?

3 Likes

He’s hanging on. I had contact with him a couple of days ago via PM.
He’s just taking a break from the forum for a bit, I’m sure he will be back when he’s ready.

3 Likes

Dear Ryan,

as you did, I don’t keep hide myself with pfs no more.

I showed my changes from the Sex God to the Bum King :crown: after 17 month right now under “Photographic evidence of facial changes (post your changes)”. Wonder how I’ll look in two years.

2 Likes

Dear all,
To let you know I’ve been accepted for FMT at the Taymount clinic I’ll be commencing treatment in 2 weeks time. There"s been alot of speculation about this over the years so i know it will gain interest. .
Im aware of one longterm sufferer who benefited greatly which in part has spurred me into taking the leap.
I’m optimistic that it will bring at least some relief.
Please don’t pour oil on it as I’m investing my hope in this as others will who see this as a possible route out of this nightmare.
Another longterm severe sufferer who is an inspiration is waiting in the wings.
Developments will be posted here.
Keep faith :pray: my freinds and wish me luck.
This could be the key to a brighter future especially for those with food sensitivities, gut related issues, A Immune responses.,permeability, sibo etc

12 Likes

God bless you. Keep us informed. Would you like to know what this treatment consists of?

2 Likes

I’ve done my research it’s not something I’m going into lightly @Henrique but thank you

what are they going to do with you in this clinic?

I’ve pm’d you

Brother you are a warrior. Hoping this helps you and yes please keep us posted

2 Likes

Hi Laz,
I dare to write to you. I read a lot about you in the forum. I’m sorry for the hell you’re living and for the worsening that you had, I also got worse but my suffering is not comparable to yours. I don’t know you, but you must be a very brave man, a warrior like the other boys wrote. With PFS you have to be brave, go on with your life as long as you have the strength to fight. A hug for you, I hope you feel better! Nobody deserves anything like this. It’s abominable

8 Likes

Hallo my friend from the old man competition! It has become silent around you! You habe been always fighting. Im just tired all the time, not fatuiged or brainfogged but tiered after only walking twice from my raw house to my car to put something out there to my home. Totally out of breath and freezing. Yeah are you getting daily help too. I get support twice a week.

Hey, are you allright?!

1 Like

My friend, your story is 1 of the most grievous I’ve ever come across. Not only have you been under the influence of PfS when the twin towers were still standing, thereby making you 1 of the longest running cases, but you also have every symptom across the board at extreme levels. Despite that, you stay positive. You have put your anonymity on the chopping block a number of times and seem to participate in every project that comes along. Your struggle deserves this public reverence. You also have attempted therapies of all types and seem burned out on it. As I said to you before, don’t abandon hope yet in your FMT endeavor. A delayed reaction is possible, similar to what happened to that lawyer.

3 Likes

Thanks for those words Taw you’re a good egg. Hope is what keeps me here and I pray you’re right re fmt. If that happened it would also bring a lifeline to others.

1 Like

youve already underwent the FMT?

October last year. I posted something but it disappeared when there was a site problem and lots of info was lost. In summary I had a full recovery for almost 24 hours it fell away when peristalsis kicked in. An autoimmune reaction. Further 1s had no effect.

2 Likes

Hi guys it’s been a while but I think now is the time for an update.

I’ll initially talk through the FMT once more. On the day in question back in October 22 I could hardly drive to the clinic power steering felt so heavy I was slouched in the car, I was driving a manual and was having to lean into the gear change which was extremely difficult, I pulled in for some diesel and had to ask another customer to release the cap and lift the nozzle to the cars funnel, i could hardly walk to the paypoint. . At this time I thought about heading back to the hotel, i could hardly turn the key in the ignition but it felt like last chance saloon I made it to the clinic, I was very weak, in an obvious distressed state, walking badly. They were in two minds i pleaded with them and it went ahead. 1 hour later I left the clinic. Within a very short space of time my vision became clear, I reconnected to the world, I noticed bird song, the beauty of autumn I felt alive nostalgic to a song on the car radio I wanted to put my foot down, the wheel was light, I wanted to be around people, I felt positive emotions, my physical frame started to fill out I wanted to go to the gym, it felt like nothing short of a miracle. I got back to the hotel after enjoying the drive, I felt like I had a future. Seeing my wife and son felt like a returning soldier. I was overcome with emotion… That night I fell asleep with normal thoughts. I woke at 4 am (peristalsis) with the feeling of impending doom, horrible emotional state was seeping back onto the fabric, the bone pain, the weakness, disassociation etc etc all landed. I could hardly walk or dress. I had more treatments over the following two weeks and the gains never returned apart from when my hands filled out in the car on day four for1 hour. I took a further 4 fmts back home transplanting them on a 4 weekly basis the last one being in March with no change.

Seperatley I’ve continued with:-

Fasting, generally working between fortnightly 48 hours dry fasting followed by omad. Eating within a 4 hour window later on in the day. Ive also carb backloaded. I’ve experimented with foods white potato often being the mainstay.

I’ve continued to have colonics, they were very frequent at first given the lack of functional digestion/transit, I now have them four weekly which I straddle with a 48 hour fast . I was also having daily warm water enemas and in the beginning I could not even squeeze the bulb and had to ask my 10 year old son for assistance (very upsetting for me having to bestow this upon him, but he was fine with it) I’ve recently dropped them to weekly.

I introduced infrared sauna therapy quickly increasing them to twice weekly but I found I was experiencing brain tremors (serotonin I think) so took a break restarting them last week.

I also tried glandulars the brain one was the most notable. I felt a surge of activity, re awakening pathways, i had a raging boner, improved mood, thought processes and physical presence. It fell back within 24 hours and repeated use brought on a worsening state. Testicle glandular helped temporarily too.

Approximately 2 months ago I decided to try to return to exercise and was compound lifting 4kg bells my arms were like jelly bones were cracking knees popping bone pain and hollowness was very apparent (a week earlier I couldn’t even grip them) I started short walks which were very laboured. Prior to this it had got to the point where i couldnt even open the car door, my son was pulling my upper garments off at night and my weight had dropped to a mere 59kg. My piss was like treacle from toxicity and I wasn’t absorbing food. The NHS were nothing but willing spectators.

Within days of starting the exercise I started to feel weight in my glutes and quads, I became reassured in my step, then I started to feel intermittent pumps in my arms. My weight started to increase(which has since plateaud) and I felt better emotionally. I got carried away and returned to the gym after over a year of absence i had confidence (dopamine), i quickly felt cold limbs, nausea, suicidal, with neuropathy and it fell away once more. I was obviously devastated.
Despite yet another setback I perservered and continued with exercise while being more sensible. Overall id say my baseline mood is slightly better, I’m getting some pump where as that had gone even prior to the crash . My body temperature has been increasing then falliing back, the regular sudden onset of fatigue has lessened, the pruning fingers too, earwax and sebaceous oil has returned intermittently. I now go to the toilet and pass a small ribbon like stool, far from normal but way better than it was. My legs had turned scaly and I was getting dermatitis on my face after eating these as well as multiple allergic symptoms have reduced. Sleep is still poor I often wake up at 2 (cortisol) and 4 (peristalsis) which is when the onset of extreme physical pain would hit, this has lessened too I often manage to get another short spell of sleep and started getting erections months ago for a few minutes on the final morning awakening. This is quite notable because I hadn’t had morning wood for over a decade (it feels mechanical only with no connection to the brain or erotic dreams, but a positive nonetheless). I continue to feel cold but not as often. I have 4 pages of symptoms and can’t go through them all but overall I’d say things are improving,. I also started getting ball and jaw ache again which is maybe due to the fluctuations in testosterone I’m not sure(I used to get these on fin which is also concerning) Every time I feel cold and the bone pain increases I either do compound lifts or go for a short walk and it abates. For years I’d do a gym session on alternate days while knocking out press ups most mornings I now perform light exercise throughout the day and even close off with lightcompoind lifts before bed. My body seems to be reacting more positively, something has changed, the automatic shutdown, stress response is no longer the only player which is encouraging. Prior to this I was stuck in only a worsening, tortured state no matter what i tried, ,nothing would lift it.(many will relate)

I really thought I was a dead man this time last year
I’d say fasting, eliminating processed shit, creams, oils, sugar,and a return to exercise has been key. AND sticking with it

Coming back from the worst imagineable state which seemed impossible should give hope to everyone on here.

Re the fmt I think it erased the epigenetic changes almost immediately but the biome attacked and killed it and the immune system was primed for future ones. I won’t rule out revisiting this in the future.

One of the original old schoolers on here helped me immensely when i couldnt think straight hed reasure me as to the path ahead and sent me daily messages of encoursgement, guidance and support, I’m underplaying how much he helped.

I’ remain in a very serious state but for the 1st time it feels that I have a say in this. My body is trying to recover despite all these years of progressive damage.

On Friday night gone out of nowhere I felt extremely irritated, sensitive to noise, all stimuli I could hardly see, tinnitus, raged, sick to the stomach with anxiety and dread, overtaken with intrusive thoughts and the feeling of impending doom. The bones in my face and skull were sore to the touch and much more. I lay there wanting to be gone I waited it out and after what seemed like an eternity it ebbed. I thought of Gods comfort to bring it down. This just shows how things can change in the blink of a blood, shot dry eye.

I can’t pretend to understand all of this even more so considering the effect finasteride has had on my brain function but I think the reduction in inflammation and toxicity has helped ease the symptoms and that the fasting may be positively effecting the dysbiosis, resting the gut allowing for healing. The potential health benefits of this cant be overstated inclusive of the ability to correct epigenetic changes via autophagy…

Recent bloods reported a reduction in Bilirubin levels, another encouraging sign which translates into a concrete evidence based positive change.

I’m doing an interview for the moral medicine channel tomorrow where I won’t mention the recent changes as don’t want to detract from the true horrors of pfs. No one should hide in the dark with this disease, I implore sufferers to step forward, be seen and be heard.

So in summary, given the state I was in the, the damage from the years of exposure etc etc there is hope for everyone if i can start to claw my way back from the abyss. So can you.

No one should ever throw in the towel. Do everything you can to keep the fires down until this is understood and a treatment is secured which will happen with everyone’s help one day.

Laz

22 Likes

Im so happy to hear this Ryan, It made my nigh, trust me. You are an example for me and you always encourage people to keep fighting.

When I read your messages I can always read optimism even when you talk about something that went bad. I really wish and Hope you can keep improving.

5 Likes