Could this be it?
1) I lack something or some things and therefore need either
- huge amounts of folate or
- low levels of folate with lots of C since C makes folate work better = same effect as lots of folate
2) My need for C has increased over time since my need for (effect from) folate has increased. And that is because I lack more and more of something else.
3) Now: Without C I need so much folate I haven't even considered taking that much. Maybe so much I can't take enough. Taking more folate just creates more deficiencies and I never reach the point where all needs are satisfied.
I read your post on Refeeding Syndrome,
@Freddd (great post btw) and recognize the induced deficiencies pattern. I normally get symptoms of low folate all the time but when I take enough Mg, Zn or C (whatever I seem to lack this time) the need for folate goes down within two hours (Zn and Mg) or about twelve (C). It's usually one of those three. And maybe C is different since it increases the effect of folate rather than compensate for some deficiency, like Zn and Mg obviously does. I seem to lack them all the time and especially Mg is hard to raise. I struggle with that every day, not sure why.
You wrote this in the Refeeding Syndrome post:
"I have a hallmark symptom of adult onset CblC disease, rapid onset of catastrophic B12 deficiency from glutathione." I started getting B12 deficiency despite taking lots of B12 when trying a supplement containing glutathione. I stopped in time since I'd read your post on B12 and knew it could happen. Does that reaction say anything about what's wrong with me?
Hi Ninan,
You ask some tough questions, tough because there is so little information on them. When I first started to try to figure out what was wrong with me, back in 1978-79, I spent days in the library reading journals, on paper. I came up with CblC disease as being an almost perfect match for the symptoms I had at that time. They were a lot of very distinctive B12 deficiency symptoms all scrambled up with folate deficiency symptoms as without having the actual MeCbl, AdoCbl and l-methylfolate there was no way to know exactly what was what. However, the folate deficiency symptoms caused by methyltrap were considered B12 deficiency symptoms, which they were in the sense that taking b12 (CyCbl in those days). In any case, at that point many were clustering into what was diagnosed as FMS 20 years later and I was called names by doctors. CblC was identified but not understood. What I was able to find out was that most died as infants and those that survived to adulthood, 3 known survivors, were all in nursing homes because of the severity of the neurological symptoms, (basically severe Sub Acute Combined degeneration). In this century, new studies were done and found that there were adults who had survived with relatively small numbers of symptoms until something triggered many severe symptoms and then they get clobbered.
In 1987 in early December I had FMS symptoms but was still able to ski and went skiing with my 3 year old son for the first and only time. A week or two later I woke up in the morning completely crashed and managed to crawl to the bathroom before vomiting. My wife got similarly sick. The doctor diagnosed "a miscellaneous entero virus". She got well after 3 months.
I went downhill from there for 16+ years, adding about 2/3 of my total symptoms either at the time of the illness or the 6 months of change from acute to chronic as many of the symptoms changed. I had just had my first demyelination episode. From there on I developed symptoms of Methylmalonic acidemia and hyper-homocysteinemia, the extreme forms of B12 deficiency despite having "in range" cobalamin (CyCbl and folic acid taken daily). Everything was damaged and none of the tests made sense to the doctors.
Six or seven years ago, it was clear something was missing. Ten of us, all doing well on the deadlock quartet but knowing something was missing, tried glutathione in various forms; some taking NAC and l-glutatamine, some IV infusions of glutathione with their doctors, some various oral forms of glutathione and a person or two taking whey to stimulate the production of glutathione. As far as getting glutathione into the system it was a 100% success. What it did to us though was completely unexpected. T
he first few days the pain the neurological pain went down and at first it seemed pretty good. Then all the b12 and folate deficiency symptoms started proliferating and getting worse. The ONLY differences were in time of onset, maybe at least due to forms and doses, and individual variations of the usual sort of individual variations. The symptoms each of us had before the DQ came roaring back.
At 6 weeks many of us started having obvious demyelination episodes and we stopped the trial immediately and did out best to reverse the symptoms. It took several days of sizable doses of MeCbl, AdoCbl and l-methylfolate to start reversing the glutathione symptoms but things never were as good as before. In hindsight it looks like that was when the copper ran out and started causing problems. We had all been working with the MeCbl, AdoCbl, l-methylfolate (barely available at a reasonable price) for 3-5 years. Something was missing, copper, not glutathione. But again, tests showed us to be "in range".
So I was the most damaged in the beginning, I had the worst response the fastest. 100% of us, there for may different reasons, all had essentially the same bad responses. Some were vegan, most were not. I doubt that all 10 of us had CblC problems. However, 100% of us were intolerant of folic acid. Because of the differences, the different speed of onset, the different severities, and different forms of glutathione or precursors it looked like dose related differences.
However, I was the only one with 2 hour onset and only one person, on whey, took as much as 3 days. The research published in 2011 mentioned the hallmark symptom of "catastrophic B12 deficiency" which I experienced as 2 hour methyltrap onset. It also said that limiting B12 was a bad idea for people with this, that they also had unstable electrolytes (minerals and metals) and low cellular folate. Whether that low folate was a result of treatment or caused by the polymorphism was not specified. However, I had experienced unstable electrolytes all my life and as a child and teen regularly woke up screaming from the spasms I now know are caused by low potassium. Low tissue potassium is a characteristic of FMS/CFS according to the research paper Rich posted after I described my experiences to him.
So, do you have CblC polymorphisms because of your response to glutathione? It's hard to tell. Either there are variations of CblC polymorphisms (which are described as having "very heterogeneous symptoms) that are at the heart of CFS/FMS for a lot of us and it isn't anywhere as rare as thought, or it could be the MTHR polymorphisms and some others or maybe it is merely a matter of dose and if a person takes too much (however much that is) glutathione it's going to do the same thing, or for some combination of all the reasons.
What your reaction appears to say is that you respond to glutathione in a way characteristic of people who generally have good effects from the DQ. Which also could mean that it likely induces other deficiencies appearing as what looks like refeeding syndrome.
Magnesium is fundamental to allowing MeCbl to work in the body. Many people are struggling with getting enough magnesium in their bodies. It;s things like this that makes for so much variation amongst people.
Seems lithium depletes folate and inositol. And if I can't tolerate C I seem to get just more signs of folate deficiency from taking folate. Guess I had some stored but that it will be gone soon. It's been more than a week since I felt I had effect from folate. And if I've noticed any effect from B12 (Jarrow's sublingualls, I've taken two this week) it's more symptoms of folate deficiency. Nothing else.