Newly diagnosed with type 1 diabetes at age 53. Consultant reckons the cause is autoimmune since I have been celiac for 30 years.
I’ve joined this forum because I’m interested in alternative treatments, something that… just hear me out now… I have an interesting history in.
Long story short: as a 16 year old back in 1986, I developed episodic cluster headache, which is a little known but excruciatingly painful vascular headache condition. Then in January 1993 I accidentally stumbled upon a treatment for it, one that was since been shown to have an efficacy of 78%, and is being studied by neurologists initially at Harvard and more recently at Yale. You couldn’t make it up, and there’s even a book about to be published on this called Psychedelic Outlaws, by Professor Joanna Kempner, with a chapter detailing my story.
I’d post some links, but this forum doesn’t permit new members to do that for the first 3 posts, but if you google ClusterBusters, where I’m known as “Flash” (that username was already taken here), then you’ll find out all about it.
Anyway… that wasn’t a solo effort - far from it - a bunch of other people joined in over the years, just a few to start with, but now numbering in the thousands, and together we figured out how to best treat a life ruining condition that had (in our opinion) be largely failed by medical science. My own contribution mostly consisted of being argumentative and pushy… but I was a lot younger back then.
Along the way we learned that pharmaceutical companies will only bring profitable medicines to market… meaning: compounds that i) can be patented (natural substances can’t); ii) are expensive; iii)need to be used frequently; and iv) aren’t so effective that they cure outright cure the condition after a small number of uses. It sort of has to be this way to cover all the mega expensive R&D and clinical trails, but perhaps also explains why *some* of the really promising avenues of investigation that we read about in the scientific press, never seem to amount to anything. That’s capitalism for you.
In the intervening quarter of a century since I was first involved in ‘citizen science’, I’ve noted that we weren’t alone, and that similar advocacy groups exist for many other life changing medical conditions, wherein patients research underground and alternative treatments on themselves. Surely there must be one around type 1 diabetes? If so then I’d really like to hook up with them.
I’ve already read Taubes’ book and just finished Bernstein’s one, precipitating some adjustments to my diet (although not quite the full keto thing… yet). Have cut right back on alcohol (that hurt), resumed eating meat, switched entirely to complex slow burning complex carbs, and am consuming my veg raw. This disease that forces us to live by a spreadsheet isn’t exactly a barrel of laughs, is it?
Since the age of 37 I’ve done a *lot* of fasting. Undertaking somewhere in the region of 500 weekly water fasts of 36 hours duration, and also a few longer water and juice fasts. Only fell out of the habit when gluten free food became scarce over lockdown. Now I’m reading that some studies show that it may be beneficial for type 1 diabetes… well count me in!
Other interesting lines of amateur enquiry are leptins (I think available through these weight loss injector pens), and a substance known as AHCC, which is an extract of shiitake mushrooms. The later seems particularly interesting since it’s mooted to regulate the immune system, and touted as a way of eliminating viruses such as the Epstein-Barr virus that has been implicated in autoimmune diseases like ours. In fact my own celiac disease began almost immediately after a bout of mononucleosis, although it took some 20 years to finally obtain the correct diagnosis.
[I’m going to duplicate this post in the alternative treatments forum.]
But anyway, that’s me, that’s where I’m at, and I’m eager to meet anyone else who uses their body as a laboratory, and I’m sure there’s a ton of information that I need to get up to speed on, so please clue me in!
Flash
I’ve joined this forum because I’m interested in alternative treatments, something that… just hear me out now… I have an interesting history in.
Long story short: as a 16 year old back in 1986, I developed episodic cluster headache, which is a little known but excruciatingly painful vascular headache condition. Then in January 1993 I accidentally stumbled upon a treatment for it, one that was since been shown to have an efficacy of 78%, and is being studied by neurologists initially at Harvard and more recently at Yale. You couldn’t make it up, and there’s even a book about to be published on this called Psychedelic Outlaws, by Professor Joanna Kempner, with a chapter detailing my story.
I’d post some links, but this forum doesn’t permit new members to do that for the first 3 posts, but if you google ClusterBusters, where I’m known as “Flash” (that username was already taken here), then you’ll find out all about it.
Anyway… that wasn’t a solo effort - far from it - a bunch of other people joined in over the years, just a few to start with, but now numbering in the thousands, and together we figured out how to best treat a life ruining condition that had (in our opinion) be largely failed by medical science. My own contribution mostly consisted of being argumentative and pushy… but I was a lot younger back then.
Along the way we learned that pharmaceutical companies will only bring profitable medicines to market… meaning: compounds that i) can be patented (natural substances can’t); ii) are expensive; iii)need to be used frequently; and iv) aren’t so effective that they cure outright cure the condition after a small number of uses. It sort of has to be this way to cover all the mega expensive R&D and clinical trails, but perhaps also explains why *some* of the really promising avenues of investigation that we read about in the scientific press, never seem to amount to anything. That’s capitalism for you.
In the intervening quarter of a century since I was first involved in ‘citizen science’, I’ve noted that we weren’t alone, and that similar advocacy groups exist for many other life changing medical conditions, wherein patients research underground and alternative treatments on themselves. Surely there must be one around type 1 diabetes? If so then I’d really like to hook up with them.
I’ve already read Taubes’ book and just finished Bernstein’s one, precipitating some adjustments to my diet (although not quite the full keto thing… yet). Have cut right back on alcohol (that hurt), resumed eating meat, switched entirely to complex slow burning complex carbs, and am consuming my veg raw. This disease that forces us to live by a spreadsheet isn’t exactly a barrel of laughs, is it?
Since the age of 37 I’ve done a *lot* of fasting. Undertaking somewhere in the region of 500 weekly water fasts of 36 hours duration, and also a few longer water and juice fasts. Only fell out of the habit when gluten free food became scarce over lockdown. Now I’m reading that some studies show that it may be beneficial for type 1 diabetes… well count me in!
Other interesting lines of amateur enquiry are leptins (I think available through these weight loss injector pens), and a substance known as AHCC, which is an extract of shiitake mushrooms. The later seems particularly interesting since it’s mooted to regulate the immune system, and touted as a way of eliminating viruses such as the Epstein-Barr virus that has been implicated in autoimmune diseases like ours. In fact my own celiac disease began almost immediately after a bout of mononucleosis, although it took some 20 years to finally obtain the correct diagnosis.
[I’m going to duplicate this post in the alternative treatments forum.]
But anyway, that’s me, that’s where I’m at, and I’m eager to meet anyone else who uses their body as a laboratory, and I’m sure there’s a ton of information that I need to get up to speed on, so please clue me in!
Flash
