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Somehow the start got lost, trying to remember how this started:
I was extremely healthy as a kid, I got an award for graduating K-12 with no unexcused absences. My senior year I got mono (epstein barr virus), that's when it all changed
Early Health/liver transplant
As I said, I got mono, and that unbeknownst to me at the time, was the inflection point for the rest of my life. This was 1996, in 1997 I went into the USAF. Prior to graduating high school and going into the Air Force, I was VERY active. I would Rollerblade 20+ miles a day, play tennis from sunup to sunset, just a real active person. I deteriorated while in the Air Force, and got sick in 1999. I was white as a ghost as I had been losing blood, and ignoring it because, "I've always been healthy". It came to a head at my sister's wedding. I was coughing non-stop, because my body couldn't get oxygen. I barely make it back to my duty station, and they finally realize my blood counts are so low that I could die at any moment basically. Lots of prednisone, got me back to normal but miserable. Discharged within the next year with UC (ulcerative colitis) and PSC (primary sclerosing cholangitis). 2000-2012 were uneventful for the most part, but looking back, I never was the person I was before EBV. I received my transplant for PSC in 2012.
Post transplant
So, in the year leading up to transplant, I was diagnosed with PPH (portal pulmonary hypertension) due to my poor liver performance they said. They said this will hopefully go away after, it didn't. I will leave out my transplant challenges for brevity, but I was back to work 1 month after, and went cross country skiing and dogsledding 3 months after transplant. I could not help but feel like my GI tract was not behaving normally though. I had a lot of abdominal discomfort and pain that they just glazed over and said was me having trouble coming off the pain meds.
Fast forward to 2016, and I start taking Kratom to help with my continued lack of energy and constant tiredness and fatigue. This actually helps, but it feels like at the expense of a later crash. I do this for a couple of years as it helps me function during the day. I started consuming THC again during this time. Somewhere along the line I got clostridium dificil (C diff) and could not shake it on Vancomycin, a strong antibiotic that is the de facto for c dfif. I finally got rid of c diff in 2018 after reciving a fecal transplant.
ME/CFS era
I ignored ME/CFS for years because I thought it was Long COVID, and my wife and I had managed to avoid it through the pandemic, even while fostering an infant boy who we had in daycare as well. This was around 2019 when it started I think, in conjunction with the c diff infection that lasted years. So since around 2019 I've had progressing POTS, dysautonomia, ataxia, tachycardia, HRV, fibromyalgia, weird soul of my foot pain, complete gastroparesis or whatever you want to call it, etc. It was a constant cycle of constipation leading to forced diarrhea as my body evacuated by force. I could write about my weird symptoms forever (no burping, no hiccups, struggling to pass gas, back won't pop, don't feel the need to stretch, etc). Some of those sound weird, but make more sense when you realize I am really describing how I notice them when I need to do them again. Like I know I am returning to normal when I feel like I need to stretch all the time, and if my back pops when I try to, it means I am recovering. Another huge issue I have had is drinking tons of water, and it's like I'm dehydrated and I urinate very little, it all comes out the GI tract for the most part. I think this is why I don't get the traditional edema and such, because I end up so dehydrated as my body isn't absorbing the water into my cells. In 2021 I quit Kratom completely. I also had an episode where I now realize I was having severe thiamine deficiency most likely. I say this because this past week I had a repeat of these same feelings of thwarted belonging, and other extreme symptoms of severe ME / CFS which is most likely just a thiamine deficiency in a subset of the population. This horrible experience in early 2021 led to me being involuntarily committed for a week in what I can only describe as a mental asylum. No treatment, just suffering, USA! USA!
Treatment
A few weeks ago I got COVID for the first time. If you look at the chart for things that make you at risk for suicide with ME/CFS, I was filling out both sides of modifiable and non-modifiable, it was rough. I stumbled across all this newish research about thiamine deficiency. There are some key videos EVERYONE should watch.
In depth discussion (older)
Managing Paradoxical side effects
More
Dr Osborne (covers the vicious cycles we get in for the pillars that cause this cycle)
Dr Eric Berg (this one is wild because he is the only one I've heard mention bottom of foot pain)
There is a lot of stuff in there that also points to the fact that my PPH could just be a thiamine deficiency. There is even weirder stuff about this, that maybe I'll tell someday once people start believing me, just as far as how far back this might really go for me.
UC could be caused by this deficiency, PPH could be, and my ME CFS surely are.
PROTOCOL
I started magensium 100mg, potassium gluconate, b complex, and benfothiamine 100mg 5 days ago now.
I stopped drinking caffeine as the above videos talk about how caffeine deactivates thiamine.
I have introduced a lot of whole foods, as well as foods rich in thiamine. Before, I thought I had SIBO, like many people along this journey, and so I would cut out cereal and bread thinking carbs were the issue. Those might have been my only sources of thiamine as I was eating a very processed diet, often with lots of sugars to make up for my lack of energy. I'm eating egg noodles that are fortified for dinner with nutritional yeast as well. I am trying to throw everything at this deficiency.
Today I went up to 200mg of Benfo on day 5, about 2 hours ago, and will report i f any changes for the better or worse.
Improvements
First things first, the paradoxical side effects. My head has felt like it's going to explode at times the first few days. The thing that made it easy for me though was, we NEVER get any signs of hope, I know I don't. People think we are depressed and down on ourselves, but I was quickly reminded that any sign of improvement is a tiny thread that feeds your excitement to get better. So, if you are in tune with your body, this protocol should be obvious, it has been for me.
Examples:
I am getting hot and cold. I wore pants and a hoodie all the time, and it was like I was always the same temp more or less.
I am sweating in my armpits, not just nervous sweating.
My heart and breathing have settled down, but also they can go crazy if not careful. It's like the ability to respond is back, and they are quick to say "Hey boss, need me!" and get a little too excited. Pacing is important.
I am tired at night, and groggy in the morning, instead of just exhausted all the time. I get something from sleep.
My GI tract has snapped into action and is not perfect but functioning, was like a graveyard before, silent.
I am peeing again, a normal amount for how much I am drinking.
Brain fog improving
Headache improving
Eye pain improving
Weird neuropathic pain in feet dissipated in days
I'm trying really hard to not leave stuff out, but I know I am. The point is, I can see changes I haven't experienced in 4 years. This can't just be placebo, I am too in tune with my body, and the more you watch those videos and more on those channels, you'll start to see why it becomes obvious that I had this. I am on an SSRI, I take NSAIDs, all these things also further breakdown these cycles.
If I had money, I'd pay you all to try this treatment. These aren't fringe things, these are normal vitamins that we overlook because "Doctors cured thiamine deficiency 100 years ago", but nobody talks about how I'm 45 and what we eat is COMPLETELY different than what we ate when I was a kid.
PLEASE PLEASE PLEASE TRY THIS, you have NOTHING but a few bucks on some vitamins to lose. Do NOT quit if you have paradoxical effects, I think that's the main reason people fail to succeed on this path, or they don't get a megadose (just meeting the thiamine need when deficient doesn't seem to be enough).
I was extremely healthy as a kid, I got an award for graduating K-12 with no unexcused absences. My senior year I got mono (epstein barr virus), that's when it all changed
Early Health/liver transplant
As I said, I got mono, and that unbeknownst to me at the time, was the inflection point for the rest of my life. This was 1996, in 1997 I went into the USAF. Prior to graduating high school and going into the Air Force, I was VERY active. I would Rollerblade 20+ miles a day, play tennis from sunup to sunset, just a real active person. I deteriorated while in the Air Force, and got sick in 1999. I was white as a ghost as I had been losing blood, and ignoring it because, "I've always been healthy". It came to a head at my sister's wedding. I was coughing non-stop, because my body couldn't get oxygen. I barely make it back to my duty station, and they finally realize my blood counts are so low that I could die at any moment basically. Lots of prednisone, got me back to normal but miserable. Discharged within the next year with UC (ulcerative colitis) and PSC (primary sclerosing cholangitis). 2000-2012 were uneventful for the most part, but looking back, I never was the person I was before EBV. I received my transplant for PSC in 2012.
Post transplant
So, in the year leading up to transplant, I was diagnosed with PPH (portal pulmonary hypertension) due to my poor liver performance they said. They said this will hopefully go away after, it didn't. I will leave out my transplant challenges for brevity, but I was back to work 1 month after, and went cross country skiing and dogsledding 3 months after transplant. I could not help but feel like my GI tract was not behaving normally though. I had a lot of abdominal discomfort and pain that they just glazed over and said was me having trouble coming off the pain meds.
Fast forward to 2016, and I start taking Kratom to help with my continued lack of energy and constant tiredness and fatigue. This actually helps, but it feels like at the expense of a later crash. I do this for a couple of years as it helps me function during the day. I started consuming THC again during this time. Somewhere along the line I got clostridium dificil (C diff) and could not shake it on Vancomycin, a strong antibiotic that is the de facto for c dfif. I finally got rid of c diff in 2018 after reciving a fecal transplant.
ME/CFS era
I ignored ME/CFS for years because I thought it was Long COVID, and my wife and I had managed to avoid it through the pandemic, even while fostering an infant boy who we had in daycare as well. This was around 2019 when it started I think, in conjunction with the c diff infection that lasted years. So since around 2019 I've had progressing POTS, dysautonomia, ataxia, tachycardia, HRV, fibromyalgia, weird soul of my foot pain, complete gastroparesis or whatever you want to call it, etc. It was a constant cycle of constipation leading to forced diarrhea as my body evacuated by force. I could write about my weird symptoms forever (no burping, no hiccups, struggling to pass gas, back won't pop, don't feel the need to stretch, etc). Some of those sound weird, but make more sense when you realize I am really describing how I notice them when I need to do them again. Like I know I am returning to normal when I feel like I need to stretch all the time, and if my back pops when I try to, it means I am recovering. Another huge issue I have had is drinking tons of water, and it's like I'm dehydrated and I urinate very little, it all comes out the GI tract for the most part. I think this is why I don't get the traditional edema and such, because I end up so dehydrated as my body isn't absorbing the water into my cells. In 2021 I quit Kratom completely. I also had an episode where I now realize I was having severe thiamine deficiency most likely. I say this because this past week I had a repeat of these same feelings of thwarted belonging, and other extreme symptoms of severe ME / CFS which is most likely just a thiamine deficiency in a subset of the population. This horrible experience in early 2021 led to me being involuntarily committed for a week in what I can only describe as a mental asylum. No treatment, just suffering, USA! USA!
Treatment
A few weeks ago I got COVID for the first time. If you look at the chart for things that make you at risk for suicide with ME/CFS, I was filling out both sides of modifiable and non-modifiable, it was rough. I stumbled across all this newish research about thiamine deficiency. There are some key videos EVERYONE should watch.
In depth discussion (older)
Managing Paradoxical side effects
More
Dr Osborne (covers the vicious cycles we get in for the pillars that cause this cycle)
Dr Eric Berg (this one is wild because he is the only one I've heard mention bottom of foot pain)
There is a lot of stuff in there that also points to the fact that my PPH could just be a thiamine deficiency. There is even weirder stuff about this, that maybe I'll tell someday once people start believing me, just as far as how far back this might really go for me.
UC could be caused by this deficiency, PPH could be, and my ME CFS surely are.
PROTOCOL
I started magensium 100mg, potassium gluconate, b complex, and benfothiamine 100mg 5 days ago now.
I stopped drinking caffeine as the above videos talk about how caffeine deactivates thiamine.
I have introduced a lot of whole foods, as well as foods rich in thiamine. Before, I thought I had SIBO, like many people along this journey, and so I would cut out cereal and bread thinking carbs were the issue. Those might have been my only sources of thiamine as I was eating a very processed diet, often with lots of sugars to make up for my lack of energy. I'm eating egg noodles that are fortified for dinner with nutritional yeast as well. I am trying to throw everything at this deficiency.
Today I went up to 200mg of Benfo on day 5, about 2 hours ago, and will report i f any changes for the better or worse.
Improvements
First things first, the paradoxical side effects. My head has felt like it's going to explode at times the first few days. The thing that made it easy for me though was, we NEVER get any signs of hope, I know I don't. People think we are depressed and down on ourselves, but I was quickly reminded that any sign of improvement is a tiny thread that feeds your excitement to get better. So, if you are in tune with your body, this protocol should be obvious, it has been for me.
Examples:
I am getting hot and cold. I wore pants and a hoodie all the time, and it was like I was always the same temp more or less.
I am sweating in my armpits, not just nervous sweating.
My heart and breathing have settled down, but also they can go crazy if not careful. It's like the ability to respond is back, and they are quick to say "Hey boss, need me!" and get a little too excited. Pacing is important.
I am tired at night, and groggy in the morning, instead of just exhausted all the time. I get something from sleep.
My GI tract has snapped into action and is not perfect but functioning, was like a graveyard before, silent.
I am peeing again, a normal amount for how much I am drinking.
Brain fog improving
Headache improving
Eye pain improving
Weird neuropathic pain in feet dissipated in days
I'm trying really hard to not leave stuff out, but I know I am. The point is, I can see changes I haven't experienced in 4 years. This can't just be placebo, I am too in tune with my body, and the more you watch those videos and more on those channels, you'll start to see why it becomes obvious that I had this. I am on an SSRI, I take NSAIDs, all these things also further breakdown these cycles.
If I had money, I'd pay you all to try this treatment. These aren't fringe things, these are normal vitamins that we overlook because "Doctors cured thiamine deficiency 100 years ago", but nobody talks about how I'm 45 and what we eat is COMPLETELY different than what we ate when I was a kid.
PLEASE PLEASE PLEASE TRY THIS, you have NOTHING but a few bucks on some vitamins to lose. Do NOT quit if you have paradoxical effects, I think that's the main reason people fail to succeed on this path, or they don't get a megadose (just meeting the thiamine need when deficient doesn't seem to be enough).
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