@Athene* I immediately state that in terms of the gravity of the situation they are among the first places. Disabilities and symptoms that started in childhood and not taken into account have led to major damage / shortages in the long run. I think Fred now supports the use of lithium, vitamins, minerals to accommodate the quartet, therefore including copper. I'm wrong ? I don't think it's a wise idea to take huge doses of B12 and folate if we don't actually have the receptors ready in the kidney and intestines. All nutrients would be excreted in the urine or at worst deposited as toxic. At the moment mine is still a really deep crisis, some days you seem to be a rocket and then you think it is the right way seeing the muscles lightly with a tone ... then I have hypotonia and therefore it is the signal that I am again from the beginning. Journey into Fred's group 3 symptoms ... so you can understand hell. I decided to start again with lithium, titling it every day together with MB12 and copper.
That's correct re Fred/lithium. I would start it at the beginning, instead of waiting for years, like I did, due to not being aware of it. I think he said somewhere else to start with minerals, d3, b Complex (low-dose), Vitamin e (full spectrum Gamma e one) etc. etc. so that you have a base built up before the Quartet.
Yes, it can be 'hell' when things suddenly get worse over and over again after periods of well-being. It's been like this for almost 7 years for me.
I had bought a wheelchair and sometimes used it just to escape the house because I was unable to walk.
That was 7 years ago and for the last few years I no longer use it.
I can walk for a short while without crashing two or three days later. I can take care of myself and my husband's meals, domestic stuff etc. Of course he helps but no longer has to do everything or hold me up in the shower. I can work from my laptop for long periods.
It has been worth it, but I have lost too much from this illness misdiagnosed as 'ME' and 'Fibromyalgia' which in this country translates to 'not really ill'.
The decades of low folate and unnecessary steroid inhalers and steroid tablets for 'asthma cough' (which completely disappeared when I began high-dose folate) caused lung cancer (non smoker) which thankfully was removed at an early enough stage not to recur (yet).
That was three years ago and I never cough anymore. The problem with coughing and breathlessness began over a decade before the methylfolate replacement. If only I had known my genetics were preventing me using folate from food properly.
So I guess I'm saying not to give up and that if you intend to follow Fred's experience you could read his post on Quora, for example, which summarises everything well if you read through slowly. It can be difficult to locate his posts. I often use the search box on this site together with his username
@Freddd
At the beginning especially you will unfortunately have to continually balance low folate and low potassium.
Often Fred refers to folate 'insufficiency' or 'donut hole insufficiency' which is common at the beginning when people mistakenly take a litte folate, which starts healing, but there's not enough to continue healing and then you crash again.
It took me a long time to move up from 5mg to 20mg of methylfolate and that's when I began to see real improvements.
Then you need to be prepared for the low potassium which follows.
It's not for everyone and I would advise that you follow Fred's answers to other people if you decide his process is likely to help you. The rest of us might get it wrong and set you on the wrong road.
I can share my experience but that's all it is.
I knew his approach would help me when I saw our symptoms matched closely and then I saw my genetics- problems with both folate and b12 absorption and delivery, separately, and my father died at 51 from a 'mysterious' and at the time, 'undiagnosable' disease, which eventually revealed itself to be 'demyelination in brain and spinal cord'.
You mention skin problems- for me that has always been eased by increasing methylfolate and staying on the low dose b Complex (low b1,b2,b3) until copper was sufficient. Only then did higher Bs help me to progress and I'm still trying to balance things with new potassium demand.
Other people don't agree with increasing folate and keeping the 3 Bs low.
Best of luck.
By the way, it just occurred to me that you may not be as much in need of copper as I was. I am also coeliac which interferes with copper absorption, apartfrom the fact that when methylation gets going it can increase need for copper.
So please do make sure to test copper. It's dangerous if you get too much.
And if you have enough copper, you may do better on the higher dose Bs ie B Right.
It's all very complex as you can see.
