Thiamine (TTFD) Treatment Update
TTFD and calcium, oxalates and calcium, calcium and vitamin D3, L-arginine, magnolia bark extract (MBE), and Salvia miltiorrhiza extract. Walking a minimum of two kilometers every day!
I’m sorry for not writing here much and for disappearing altogether for most of this year. Many things happened regarding self-treatment and my personal life, which required most of my energy. The end of the year is very close, and it took all these months to become sure of what works and what doesn’t for me.
I’ll start the update by mentioning that the geneticist didn’t find any mutation related to mitochondrial function. Well, maybe one day, in the future, it’ll be found. I’m not obsessing over finding a diagnosis or a name for my symptoms. I’m only interested in getting better. So I’ll get right to the updates now.
TTFD, Dicalcium Phosphate, and Oxalates
The first TTFD supplement that I took in 2020 contained 75 mg calcium and 69 mg phosphate for every 50 mg of TTFD, as dicalcium phosphate. I did not think anything of it at the time. Supplement manufacturers put all sorts of adjacent substances besides the main ingredient in their pills.
I did notice that TTFD from Thiamax didn’t have the same effect as my usual supplement. I even thought there might be a qualitative difference. I realized in January/February 2022 that taking TTFD powder or the newer version of Allithiamine from Ecological Formulas not only did not make my symptoms better, but it also made my headache much worse. I didn’t know why until I looked at the content of Allithiamine. It no longer contained dicalcium phosphate.
I tried to fix the issue by buying phosphorus and calcium as separate supplements. This didn’t make my symptoms better. I started looking for dicalcium phosphate supplements and found none, except for warnings that it’s bad for health and eating deli meat is terrible. Nonetheless, I kept searching for it and only saw it as a supplement for dogs and cats on a website that sells supplements and foods for pets.
The moment I took the exact dosage I had been taking at the beginning of my TTFD treatment, my symptoms improved similarly.
I don’t know why it has to be dicalcium phosphate, not calcium and phosphorus, taken separately. I know that supplementing calcium without phosphorus would aggravate my phosphorus deficiency. Guess where phosphorus is used: to make adenosine tri-PHOSPHATE (the fuel we burn for energy). But I do believe that half of my symptoms were due to chronic hypocalcemia since childhood, as I grew up with a vegetarian diet (high in oxalates that must be depleting calcium in a way), and even now, if I eat high oxalate foods my symptoms worsen in the absence of dicalcium phosphate.
However, I am convinced, more than ever, that whatever damage oxalates do, they do it because of how they impact calcium. It’s not about sulfur, as some try to find evidence for. Occam’s razor at its best - the first thing oxalates do in the body is bind to calcium. I will write an in-depth post about calcium since it’s mind-blowing how easy it can explain all those “hysteria/psychosomatic/functional neurological syndromes” that are blamed on the weakness of the feminine mind.
Hypocalcemia Symptoms and Vitamin D Intolerance
Another extraordinary discovery was that I was able to tolerate vitamin D again as long as I was on really high doses of dicalcium phosphate. I’ve had vitamin D deficiency detected by lab tests since 2015. Attempting to fix it in 2019 with 20 000 I.U. of cholecalciferol made my constant migraine headache much worse (my GP didn’t believe me, saying, “vitamin D cannot give you headaches!”). This has happened anytime I tried to supplement it or sunbathe since 2015.
This summer, I was able to supplement with 60 000 I.U. per day while taking high doses of dicalcium phosphate. I haven’t had a cold since. I had covid for three days, the only upper respiratory infection this year.
I experienced other improvements - I was able to do gardening. I started to feel like myself. My brain fog was lifted. I could have conversations. I knew who I was. My POTS symptoms were mild, though dysautonomia symptoms were still present. TTFD alone isn’t able to fix my POTS.
Endothelial Nitric Oxide Production: L-Arginine and Salvia miltiorrhiza
One day in October 2022, I searched for more information about cardiac Syndrome X (microvascular angina), most commonly diagnosed in women (hence the X in the naming). My mother was diagnosed with microvascular angina when she was 50 years old, and we have many symptoms in common.
”Cardiac syndrome X (CSX) is characterized by typical or atypical anginal chest pain with no evidence of significant coronary vascular abnormalities visualized on angiogram. It is viewed as a type of ischemic heart disease with occurrence most prevalent in perimenopausal and postmenopausal females.” (Source here)
I ended up on a blog written by a young female, in which I could recognize most of my symptoms related to my inability to exercise, angina pain following exercise, and post-exertional malaise that would take weeks to months to improve. I decided to ignore what the cardiologists have told me consistently - you don’t have a heart issue, your heart is fine, there’s no reason to investigate further, and you’re too young for heart disease (despite typical and apparent symptoms of heart failure/cardiomyopathy).
Thus, I went on a rabbit hole digging up information on what supplements help specifically with microvascular angina/CSX. I found a study explaining how taking 3 grams of L-arginine x 3/day significantly improved this type of angina and increased the ability to exercise in a high proportion of the people treated with it. L-arginine is a precursor of
The funny thing is that I have had l-arginine at home since 2019 but didn’t use it. I didn’t take megadoses of it. I felt improvement in my energy levels from the first day I supplemented it. I was able to walk faster and not get out of breath. I could walk double the distance without experiencing a dip in my energy levels, aggravating my insomnia or my headache, and so on.
Adding Salvia miltiorrhiza, a Chinese medicine plant that enhances NO production in the endothelium, also works synergistically with l-arginine to improve my heart symptoms.
I am currently able to walk about 2.5 km every day in about 25 minutes. I can walk 4.5 km 3-4 times a week without side effects. I can even jog 100-200 m until my heart rate increases too much. This weekend I walked 7 km in 110 minutes, and I am fine.
Before, I could only walk 200 m/day and still had to take days off.
Magnolia Bark Extract (MBE) and Heart Symptoms
I started retaking MBE around the same time I started megadosing on L-arginine.
The two must be working together to improve my heart symptoms. It has several mechanisms of action, one of which is to regulate calcium channels through a weak action.
The main drugs doctors give to those suffering from angina or cardiomyopathy are calcium channel blockers. Those drugs have many side effects and create more diseases in the long run. MBE doesn’t give me side effects at doses of 200 mg twice a day.
Even more so, honokiol is the only substance known to improve the expression of SIRT3, which is a “mitochondrial NAD+-dependent protein deacetylase that is encoded by the nuclear genome” (source). SIRT3 is the “master regulator of cardiac metabolism” and “is expressed in high levels in healthy hearts but downregulated in the aged or diseased hearts” (source).
Conclusion
If you give your body what it needs, it will get better. It knows how to get better. Every cell in your body knows what to do. The last time I walked 7 km was in 2015, and even then, I paid for it extensively (more fatigue, more shortness of breath while walking, more insomnia, more headache). Now I can do it without experiencing side effects.
In the following posts, I’ll write about what I do, how I train to recover my heart function, what I eat, SIRT3, and many more.
In the spring I had an annual physical exam and the labs came out fine - other than elevated phosphate. I had just a week before discovered sugar free pudding mixes (jello) and had eaten a big portion every day - the powder which is enormously high in phosphate.
Just thought to let you know in case you wanted to experience with high phosphate intake without having to buy veterinary supplements!