@Freddd, 10 years ago or probably more, your writings about folate, B12 and potassium were the first descriptions of cause and effect that actually fit with my symptoms. It gave a little order to the chaos and methylfolate was one of the first things that ever made me feel any better. Then I felt worse and it was because of low potassium. Giving a little order to the chaos gave me hope and I want to thank you sincerely for that.
I read from one of your recent posts that you have a lot on your hands with your health right now and I am sorry to hear that you are having to deal with that.
If you have a free moment or bit of energy and if you are interested, I was wondering if you had seen the website hormonesmatter.com and Dr. Lonsdale's hypotheses about thiamine deficiency being a hidden cause of strange symptoms. I have read interesting stories on the website about people with weird symptoms like me - fatigue, mast cell problems, Ehlers-Danlos syndrome - improving from high dose thiamine. I have tried it and improved. I don't feel great yet, but I also don't feel like I've been hit over the head with a shovel on a daily basis, which is how I have spent a lot of my recent years. I've been able to reduce my sleeping medication by quite a lot. I went through a paradoxical set of symptoms where I felt worse with the thiamine before feeling better, something that Dr. Lonsdale believes can be quite typical with thiamine deficiency and can indicate an eventual positive response.
High doses of thiamine seem to suppress cancer growth. Thiamine suppresses hypoxia inducible factor-1, which plays a role in cancer. Another term for thiamine deficiency is pseudohypoxia. I thought you might be interested in the weird symptoms/strange metabolic problems aspect of how people are describing their experiences on the website.
Previously, I have had a markedly good response to high dose biotin. I am interested that there is a phenomenon called biotin-thiamine responsive basal ganglia disease in which there is a problem with a thiamine transporter and somehow the biotin deals with a deficient transporter issue and helps the thiamine get absorbed into the brain. People with this condition have problems with the brain stem as well.
One of Dr. Lonsdale's ideas is that thiamine deficiency affects the portions of the brain the most that have the highest need for oxidative metabolism, a type of metabolism that uses oxygen and requires thiamine. These portions of the brain control the autonomic nervous system and thiamine deficiency can cause symptoms that look rather like the autonomic symptoms found in POTS and may relate to the autonomic problems in SIBO, with dismotility causing bacterial overgrowth. Dr. Lonsdale's book mentions that people with mutations in thiamine transporters are especially susceptible to developing POTS from what might be minor immunological insults to most people. The basal ganglia is also involved in sensations of fatigue.
Anyways, I'm off to try MeB12 again. My MCV is 99, as usual. Every time I have tried even small amounts up to now, I have gone really deficient in potassium, but I am going to try about 50mcg and a lot of potassium and take it from there. It seems like going extremely potassium deficient from very small amounts of MeB12 might indicate a deficiency in MeB12.
Curious what you might think about the possibility that some people with ME/CFS might have combined methyl pathway problems and thiamine problems.
