Sebastian
The Force is Strong With This One
Hi Everyone
It’s been quite a while since I originally posted my introduction thread and was hoping to begin networking here. I’ve wanted to post this thread for some time now but as you will see as you read on I’ve been struggling with a range of issues that in particular have severely reduced my energy and motivation, which combined with the cognitive symptoms I will latter discuss, I have found it extremely difficult to sufficiently organize my thoughts to a point where I can delineate this is a coherent manner.
To avoid a big narrative dump I’m going to try and keep this as tight as possible. I’ll happily answer any questions or explain more if requested.
CONTEXT
I’m currently 20 years old and ever since entering my teens I’ve been dealing with a complex range of symptoms that have progressed since then to where I am today. In my early teens the symptoms mostly centred on digestive and gut issues followed by the emergence of my now 7 year battle with chronic sleep disturbances which then compounded to servery impact my mental health. Along with support from my parents, I’ve tried a host of protocols and supplements over the years in an effort to gain some degree of control over these symptoms in an attempt to halt their progression and reduce their impact. I’ve also had a series of consultations with Keyhole who has kindly designed bespoke protocols attempting to alleviate my now growing list of symptoms.
Unfortunately, at this point this progression has impacted my ability to engage in formal education and is now beginning to impact my social life. The onset of these symptoms which were first noted when I began in secondary school, progressed to a point at which my parents and I decided the best course of action was to leave and begin home education which I continued until age 17. Following this I completed a 1 year course in computer science ahead of gaining entry into university with the intention of pursuing a full 4 year degree in the same subject. Then with the arrival of COVID, the combination of remote learning and insane levels of perpetual assignments and exams exacerbated the already complicated logistics of functioning with these pre-existing challenges, culminating in the decision to take a break from the stress and attempt to focus on finally getting to the bottom of these problems.
Of all my various symptoms, not being able to think straight due to varying degrees of persistent brain fog is by far the most unnerving and debilitating for me as research in my areas of interest (neuroscience, molecular biology/pharmacology and organic chemistry) is the only thing that has kept me sane through the past 2 years and nothing scares me more than the thought of losing that.
RECENT ACTIONS
After coming out of college for a second time this spring I began with a seven-day total fast (taking only water and electrolytes) in an attempt to clear my head, which at the time really helped. I then started back eating a carnivore only diet (inspired by Peterson and his family) which I kept up for about 2 months, eating only organic beef and then later introduced lamb and pork. As far as I can tell I was in ketosis for most of this period.
I felt generally much better and even my sleep showed minor improvements, but after about a month of this I began to experience a growing sense of constant hunger; it seemed no matter how much I ate I never truly felt full. I was eating 4+ meals a day compared to my usual 1-2; this was soon followed by an intense craving for carbs (this was really quite something else) and an inability to tolerate high fat foods (most of the time eating anything fattier than a stake or burger would cause nausea that would often result in vomiting).
I even found that butter began to exacerbate many of my symptoms so I moved on to duck fat and olive oil which definitely helped – but I still couldn’t get enough into me to satiate (as an important note, though I’ve been mostly off gluten for about 7 years but it never produced any noticeable acute effects when I ate it, even after long periods of not consuming it – but I’ve never been able to handle dairy as I usually get the runs or feel instantly sick etc at the slightest amount, although I was previously able to tolerate butter and to a lesser extent a small amount of cheese). That is when I decided to introduce 50gs of rice mixed with egg yolks and cooking fat, which helped greatly with the cravings and complete subdued the ever present hunger.
After about 3 months of this I decided to attempt the Iodine protocol due to another list of symptoms I will explain down below. My protocol was/is the following:
Perversely, by the end of my 7 day fast my back erupted with Tinea versicolor which I think I’ve inherited from my mother (I used to experience very minor signs during the summer but this was a shoulder to shoulder outbreak). Perhaps a result of candida like infections being driven from the gut? (when I was very young I had a series of antibiotic treatments for an infection that induced a variety of adverse effects and my dad thinks my gut has never been right since). It’s still with me and goes between pale and violent red phases.
I went off the protocol for about 6 weeks when my mental state deteriorated (in part due to the detox symptoms) and I spent time with friends during which I unfortunately let my diet slip a bit.
Anyway, I decided to try again about a week and a half ago so I’m back on the above.
QUESTIONS
So now with the above context covered my symptoms are:
QUESTION 1: So, given what I’ve written above, do people here think these seem appropriate detox signs or could it be that I need to restructure my protocol?
Pressing reason for this question is that I actually have just about all the major signs of Lymphoma and my mother is very stressed by this!
QUESTION 2: The anaphylaxis like reactions is concerning, especially for my parents who are considering getting stand by shots of adrenaline in case of a more serious incident. Any thoughts on this?
CONNECTIVE TISSUE DISEASE /Ehlers-Danlos syndrome
I should finally add something about this.
My sister has been diagnosed with this condition but even though we both manifested many of the classic hyper-mobile signs as children we never really looked into it beyond this (I suppose all the top line symptoms were so strong the underlying potential of this as a major cause of so many of my symptoms got lost in the mess of surface noise). However along with my parents it’s suddenly dawning on me. I have so many of the primary markers and some of the rarer and more unpleasant ones. For those who don’t know the first way I referred to it by – Connective Tissue Disease – tells you the key issue here – basically it can affect the structural integrity of all the connective tissues throughout your body, both externally and internally, and in rare cases can even effect the vasculature (fortunately neither me or my sister seem to have any vascular symptoms). Due to the multitude of systems this condition can affect the list of symptoms it can comprises is longer than a giants arm.
Nothing much I can say on this as I am still digesting the implications – but I include just to ensure all surrounding context is clear. More on this perhaps in a later post.
I think I have tried your patience long enough. I would really appreciate any feedback from members specifically around the protocol issue and the other symptoms I mentioned as I would like to be able to put my parent’s mind at ease.
A final note; I had blood tests done about 2 months ago in the general practice and all that came up was marginally elevated thyroid stimulating hormone and marginally low T-3.
Having read back over the above I imagine I come across as a right hypochondriac. Having distilled the last few years into these words even I didn't realize how crazy it sounds!
Anyway, thank you all for reading.
It’s been quite a while since I originally posted my introduction thread and was hoping to begin networking here. I’ve wanted to post this thread for some time now but as you will see as you read on I’ve been struggling with a range of issues that in particular have severely reduced my energy and motivation, which combined with the cognitive symptoms I will latter discuss, I have found it extremely difficult to sufficiently organize my thoughts to a point where I can delineate this is a coherent manner.
To avoid a big narrative dump I’m going to try and keep this as tight as possible. I’ll happily answer any questions or explain more if requested.
CONTEXT
I’m currently 20 years old and ever since entering my teens I’ve been dealing with a complex range of symptoms that have progressed since then to where I am today. In my early teens the symptoms mostly centred on digestive and gut issues followed by the emergence of my now 7 year battle with chronic sleep disturbances which then compounded to servery impact my mental health. Along with support from my parents, I’ve tried a host of protocols and supplements over the years in an effort to gain some degree of control over these symptoms in an attempt to halt their progression and reduce their impact. I’ve also had a series of consultations with Keyhole who has kindly designed bespoke protocols attempting to alleviate my now growing list of symptoms.
Unfortunately, at this point this progression has impacted my ability to engage in formal education and is now beginning to impact my social life. The onset of these symptoms which were first noted when I began in secondary school, progressed to a point at which my parents and I decided the best course of action was to leave and begin home education which I continued until age 17. Following this I completed a 1 year course in computer science ahead of gaining entry into university with the intention of pursuing a full 4 year degree in the same subject. Then with the arrival of COVID, the combination of remote learning and insane levels of perpetual assignments and exams exacerbated the already complicated logistics of functioning with these pre-existing challenges, culminating in the decision to take a break from the stress and attempt to focus on finally getting to the bottom of these problems.
Of all my various symptoms, not being able to think straight due to varying degrees of persistent brain fog is by far the most unnerving and debilitating for me as research in my areas of interest (neuroscience, molecular biology/pharmacology and organic chemistry) is the only thing that has kept me sane through the past 2 years and nothing scares me more than the thought of losing that.
RECENT ACTIONS
After coming out of college for a second time this spring I began with a seven-day total fast (taking only water and electrolytes) in an attempt to clear my head, which at the time really helped. I then started back eating a carnivore only diet (inspired by Peterson and his family) which I kept up for about 2 months, eating only organic beef and then later introduced lamb and pork. As far as I can tell I was in ketosis for most of this period.
I felt generally much better and even my sleep showed minor improvements, but after about a month of this I began to experience a growing sense of constant hunger; it seemed no matter how much I ate I never truly felt full. I was eating 4+ meals a day compared to my usual 1-2; this was soon followed by an intense craving for carbs (this was really quite something else) and an inability to tolerate high fat foods (most of the time eating anything fattier than a stake or burger would cause nausea that would often result in vomiting).
I even found that butter began to exacerbate many of my symptoms so I moved on to duck fat and olive oil which definitely helped – but I still couldn’t get enough into me to satiate (as an important note, though I’ve been mostly off gluten for about 7 years but it never produced any noticeable acute effects when I ate it, even after long periods of not consuming it – but I’ve never been able to handle dairy as I usually get the runs or feel instantly sick etc at the slightest amount, although I was previously able to tolerate butter and to a lesser extent a small amount of cheese). That is when I decided to introduce 50gs of rice mixed with egg yolks and cooking fat, which helped greatly with the cravings and complete subdued the ever present hunger.
After about 3 months of this I decided to attempt the Iodine protocol due to another list of symptoms I will explain down below. My protocol was/is the following:
- Iodine – began with 15mgs a day and gradually worked up to 210mgs as of now.
- Salt – 1-1.5 teaspoons of sea salt in the morning, sometimes on an empty stomach but as it makes me highly nauseous, i often have to eat something prior to keep it down.
- Nicotinamide – 1,000-2,000 mgs a day
- Riboflavin – 200mgs a day although of late I’ve run out and yet to replace (I am also taking a B-complex with Riboflavin in but at a lower dosage).
- Selenium – 200 micrograms a day
- R-alpha lapoic acid – 1,200-1,600 mgs a day
- NAC – 1,200-1,800 mgs a day
- Vitamin-C – 3-6gms a day in one dose about 2 hours after iodine (and now increasing that to bowel tolerance due to recent exacerbating circs. – see below)
Perversely, by the end of my 7 day fast my back erupted with Tinea versicolor which I think I’ve inherited from my mother (I used to experience very minor signs during the summer but this was a shoulder to shoulder outbreak). Perhaps a result of candida like infections being driven from the gut? (when I was very young I had a series of antibiotic treatments for an infection that induced a variety of adverse effects and my dad thinks my gut has never been right since). It’s still with me and goes between pale and violent red phases.
I went off the protocol for about 6 weeks when my mental state deteriorated (in part due to the detox symptoms) and I spent time with friends during which I unfortunately let my diet slip a bit.
Anyway, I decided to try again about a week and a half ago so I’m back on the above.
QUESTIONS
So now with the above context covered my symptoms are:
- Brain fog – specifically long and short-term memory impairment, as well as focus, motivation and cognitive clarity. Generally, I’m finding it very difficult to organize and sustain thoughts (which I hate!)
- Mental Health – depression like symptoms, low mood and mood swings, especially in the mornings. Bouts of irrational free-floating anxiety (which I’ve persistently struggled with as a base line of my personality but it’s got more persistent).
- Stomach Issues – aches and nausea sometimes leading to vomiting with no obvious cause. Persistent diarrhea.
- Pain – increasingly worsening, particularly from my jaw down through my neck, shoulder blades and chest (my chest also tightens up leading to the feeling of suffocation). The only way I can describe this is as if my bones are being both stretched and placed under excess pressure concurrently which leads to the sensation of being crushed by gravity (for the most part this is still manageable with paracetamol - I’m avoiding Ibuprofen due to my stomach disturbances and my history of ulcers). It is sometimes bad enough to necessitate low to moderate doses of codeine, although this is not a constant with some days a lot better than others but I’m unfortunately noticing a trend towards the worse. This is generally only bad when standing up or moving around although I can also manifest in a similar form as orthostatic intolerance (but this may be rooted in the EDS I think I have – see below).
- Sleep/Night Sweats – sleep patterns are erratic as ever (I can flip from not sleeping for 30 hours to interrupted sleep followed by periods where I can’t be awake for more than 12 hours before I have to pass out. Keyhole has suggested that I may now have Free-running (non-24) circadian disorder and has kindly designed a rigid protocol to help shift this which I was planning on starting a while back but haven’t yet because of the recent disruptions as above).
- Fatigue – flu-like in nature as a near constant.
- Near anaphylaxis like reactions – with no warning or apparent trigger, my entire body goes bright red over a period of 2 mins or less (often starting around the hairline and ears and spreading down) and lasts for about 10-15mins before slowly subsiding. My skin during this is unbelievably itchy and hot to the touch. I suspect this is attributable to mast-cell activation syndrome which seems to be quite common with suffers of EDS (again see below). However, this is a new phenomenon and it seems to be getting worse with each attack.
QUESTION 1: So, given what I’ve written above, do people here think these seem appropriate detox signs or could it be that I need to restructure my protocol?
Pressing reason for this question is that I actually have just about all the major signs of Lymphoma and my mother is very stressed by this!
- Persistent night sweats
- Large patches of blood blisters on my back and arms (that don’t go away when you press them)
- Itchy skin – I feel as if I want to scratch my skin off!
- Chest pain or pressure
- Fatigue
- Some weight loss
QUESTION 2: The anaphylaxis like reactions is concerning, especially for my parents who are considering getting stand by shots of adrenaline in case of a more serious incident. Any thoughts on this?
CONNECTIVE TISSUE DISEASE /Ehlers-Danlos syndrome
I should finally add something about this.
My sister has been diagnosed with this condition but even though we both manifested many of the classic hyper-mobile signs as children we never really looked into it beyond this (I suppose all the top line symptoms were so strong the underlying potential of this as a major cause of so many of my symptoms got lost in the mess of surface noise). However along with my parents it’s suddenly dawning on me. I have so many of the primary markers and some of the rarer and more unpleasant ones. For those who don’t know the first way I referred to it by – Connective Tissue Disease – tells you the key issue here – basically it can affect the structural integrity of all the connective tissues throughout your body, both externally and internally, and in rare cases can even effect the vasculature (fortunately neither me or my sister seem to have any vascular symptoms). Due to the multitude of systems this condition can affect the list of symptoms it can comprises is longer than a giants arm.
Nothing much I can say on this as I am still digesting the implications – but I include just to ensure all surrounding context is clear. More on this perhaps in a later post.
I think I have tried your patience long enough. I would really appreciate any feedback from members specifically around the protocol issue and the other symptoms I mentioned as I would like to be able to put my parent’s mind at ease.
A final note; I had blood tests done about 2 months ago in the general practice and all that came up was marginally elevated thyroid stimulating hormone and marginally low T-3.
Having read back over the above I imagine I come across as a right hypochondriac. Having distilled the last few years into these words even I didn't realize how crazy it sounds!
Anyway, thank you all for reading.
,but a little more knowledge is allways welcome in my mind !
