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I just thought i'd post an update, if only to monitor my own progress... this has some interesting points of note, GP bloods + plus feedback from my visit to Professor Bouloux
In the past 2 weeks i've been eating at least 95% raw food, which I see as my attempt to shed some of the terrible mental sides I have been experiencing (mainly brain fog & emotional bluntness). After reading recoveries such as Japanther in this area and the success replicated elsewhere (cdnuts) this seemed like a good way to go. To be honest, i've always eaten very healthy and had been working up to this point ever since my crash roughly 3 months ago, so I don't really see this as a particularly drastic move, just something i've been building up to. Morning always starts with broccoli, spinach and carrot smoothy followed by some chopped fruit (apple, orange, kiwi, pear and anything else lying around). I have found this to be an adequate start to the day, it has been helping, but it's early days. Lunch is something along the lines of avocado, tomatoes, lettuce, spinach, cabbage, walnuts, few raisons, sometimes small portion of cous cous, broccoli, cauliflower, carrot and again any other bits lying around (all raw). I have some sultanas and raisons lying around for snacks at work and these new "NakD" bars sold here in the UK. Basically they are chopped fruit and nuts compacted into a bar, not cooked/baked and nothing else added, they are really good snacks for work and fulfil any sweet craving I may get throughout any given day. The only exception I have been making is to have a couple of slices of wholewheat, seeded toast with butter before bed. This sits nicely the stomach and appears to be helping with sleep somewhat.
In the first week of the diet I didn't really notice much change in my mood, maybe slightly lifted. Then last week out of 5 days at work I think I had 3 good days (+ 2 OK'ish nights sleep); I was quite enagaged at work, laughing and joking and generally felt 70% my normal self. Quite an improvement having literally sat at my desk totally quiet for a good month or 2 (0%), whilst people were becoming increasingly concerned around me. So, on the face of it looks like the diet has been helping, but... to prove to myself it was the diet and not some form of placebo effect I decided to go out and eat a burger and chips with my family last night. The result - I felt shit, and now feel quite miserable, low and no desire to go and see friends or do anything other than mope about waiting for the new week to start where atleast I will have my work to try and focus on. So, from here inward, I am 98% raw food (no exceptions), the 2% accounts for buttered toast at bedtime, I really think this is a necessary exception. One thing to note is that this diet doesn't need to be painful, there are plenty of places to source nutritious raw food in the UK and the new bars I was talking about are a perfect substitute for the odd chocalate bar you may have had previously. It's actually quite fun shopping for new and interesting raw food, so I have full intentions of keeping this up as long as I can now; months, even years. I think it's possible with the level of support I am getting from my family.
In addition to noticeable improvement in mood as a result of the diet, I also found that coupled with the 2 good nights sleep I had, my eyes cleared up a bit. They were actually looking quite bright and white on one day and it seemed like my vision was clearer, maybe 90% as apposed to 65-70%. This is another reason why I will be strictly following this regime going forward, in the hope that prolonging the regime will force my body to adjust permanantly to the new improved mental and physical state. I really believe this can happen and that in time you can start re-introducing foods you used to know and love (Correiovip has followed a similar protocol with success). In the space of 2 weeks, these small improvements in mental state and vision that I did experience make me optimistic that a decent recovery can be made here simply by the food I eat. This also leads me to believe that the liver has a really important role to play here, cited in other threads. Maybe crashing or prolonged fin use slows liver processing down to such a degree, that all foods eaten post-fin kind of clog the liver up somehow and this is why some people get worse over time. In turn, the struggling liver affects the eyes and other parts of the body. Eating the cleanest raw food possible can only alleviate strain on the liver, giving it more opportunity to become strong again. I've also completely cut out alcohol, caffeine, sugar etc. I never really had much of this before fin anyway, so it's not hard for me to cut them completely out.
Aside from these above small positives, I've still got a bent numb cock, severe ED and no libido. Other sides are waivering + some new ones. I have had some small surges of libido, noticeably after I have had a carob coated raw food bar or vitamin dosing (early morning). However, these surges have been so few and far between that each time I haven't been able to resist seizing the moment and finding somewhere to relieve myself (sorry to start getting into details), resulting in a variable degree of pleasure. What then follows is just plain annoying - my balls pull up tight for the rest of the day or for a couple of days. I guess this is nothing you haven't heard before. They get a bit bigger after light exercise (any strenuous exercise just makes them smaller and tighter) but generally they are small, tight and the sack feels empty. The up and down thing also makes things like reading a chore. I used to love reading fiction, but now I simply cannot do it without my mind wandering off or my balls going up and down all the time. I just don't get it. It's these quality of life aspects that make this condition so difficult to deal with.
So while I think I have found a protocal to make me atleast seem human on a day to day basis, to this end I know i'm in a serious lot of shit here. Frankly, it's terrifying and especially seeing Dr Bouloux, who I understand has seen and continues to see PFS sufferers is as dumbfounded as the rest of us. During my first consultation with him we went through my story etc, then he checked me all over (including poking around in places I never thought i'd let another man). He couldn't see anything physically wrong with me, apart from maybe that my hands were a little cold. We talked for a little while and concluded that the best course of action for now was to give it another 4-6 weeks before trying anything. Now, I have to say, when I think back to where I was 2 months ago, where I couldn't talk to anyone with even a hint of personality in my voice, I know I have come a long way. So this could be good advice. I do still feel like I can recover further naturally, but do of course realise that it's a long road ahead and that other things might start degrading my health in that time. This is what worries me most. For example, my skin is drying out, my hands especially. They just feel dry and touching things feels different. Wounds continue to heal very slowly, and this does not appear to be improving. I may be experiencing some muscle degeneration but it's too early to tell. So, my general feeling is - SHIT. However, I agree with Professor Bouloux that I should exhaust all natural options before commiting to pharmaceuticals.
On a lighter note, Professor Bouloux seems like a really good guy, I think he's totally confused about our situation and isn't close to knowing the answer, but he does seem open minded. I did get the feeling he was leaving it up to me to decide what action I wanted to take, rather than dictate what to do next. He also agreed for the lab there to do all the blood tests I would need, so I will get them done over the next week or so. Knowing what to do next is a real conundrum, but I am very happy to be under Bouloux's supervision for whatever action I take. I haven't had the tests at Bouloux's lab yet but I had 2 sets with my GP at 2 months and 3 months off (probably do not cover everything I need for an assesment of what action to take):
15/04/2011
Serum Testosterone - 11.9 (10 - 30) Free Androgen Index - 42.5 SHBG - 28 Haemoglobin estimation - 14.9 White Blood Cell count - 3.9 Red Blood Cell count - 5.36 Platelet count - 152 Serum Sodium - 140 Serum Potassium - 4.4 Serum Creatinine - 85 Serum Albumin - 44 Serum ALT - 42 Serum TSH - 1.27 Serum Bilirubin - 14
08/03/2011 (2 weeks after crash)
Serum Testosterone - 7.2 (10 - 30) Free Androgen Index - 21.2 SHBG - 34 LH - 2 FSH - 8 Haemoglobin estimation - 15 White Blood Cell count - 5.5 Red Blood Cell count - 5.3 Platelet count - 241 Serum Sodium - 140 Serum Potassium - 5 Serum Creatinine - 87 Serum Albumin - 48 Serum ALT - 48 Serum TSH - 1.4 Serum Vit B12 - 538
I feel like my test levels have probably rose again from 11.2. Maybe somewhere around 15-16, just a hunch, but we'll see. I don't really understand everything well enough yet to make a reading into the wider results. Any comments welcome. I will post ranges and the results from Bouloux's lab later. Once I get my thoughts more together after a decent spell on the raw food, I am going to start my research into the human body and possible routes to recovery. I will not give up fighting for my life back, and when I get back I am going to do everything I can to get the Belgravia centre shut down in London and get this drug off the market. It's down right wrong for this to happen to anyone and I sympathise so much for some of the guys suffering many years. A part of me knows that this will likely be me in years to come, but another part of me really believes that this is not irreversible.
Catch up later
Cheers, James
Last edited by Chi on Mon Aug 01, 2011 9:08 am, edited 1 time in total.
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