Hope you don't mind me reviving this thread (but it's a good one and I've just finished it).
@Athene* are you still on Fred's protocol? How much progress have you made since this thread?
I was one of the most disabled ones trying Fred's protocol when I began it around 2014, more consistently from 2015. I had got to the stage of considering which wheelchair to buy because I kept having sudden flaccid muscle attacks where I would sink to the ground and be completely paralysed for several minutes at a time.
Breathlessness and profound weakness kept me bedridden after that, not to mention the torture of nerve pain, muscle pain, excoriated skin, skin infections, UTIs, sciatica, tinnitus, hearing loss, vicious heartburn, IBS, word forgetting making conversation difficult etc. etc. etc...Too weak to lift head from pillow. Needed help with self care.
It's been extremely slow but I'm now up and about every day doing usual things around the house, cooking, cleaning etc. I also work from laptop for several hours and go for a walk most days, still fairly short at the moment - 20 minutes, but hoping to increase that.
I'm also using kettle weights to slowly build muscle strength and the other day I lifted a huge heavy mirror on to a fixing above my head on a wall. Doesn't sound like a big deal but I was absolutely thrilled.
I've been hobbled along the way by a vitamin D issue- it's my 'limiting factor' as Fred would call it. Every time I took even a tiny amount of D3 it would cause immediate deficiency symptoms of folate and potassium, causing a dreadful crash.
The only way I could take vitamin D was by using a Sperti lamp which has brought my level up to 110 nmol/L and allowed me to progress in leaps and bounds in terms of energy.
After high dose boron things improved so I can now use a tiny amount of D3. I mainly use the Sperti lamp and sunbathing in summer gives me huge energy. I have equally huge magnesium need! I take a lot and use magnesium chloride spray too.
I'm hoping that lithium orotate will help balance minerals, as Fred has found. It's already allowed me to hold on to my b12 injections for longer.
I needed six months of 15-20mg copper after I got everything working last summer. Now on 6mg daily.
Still on 10mg x 3 Mecbl injections daily plus 50mg methylfolate alternating with Quatrefolic every couple of months. Carnitines need alternating too.
It's massively expensive, mentally tough - multiple setbacks can reduce you to a physical and mental wreck who doesn't want to wake up to another day, but the gains do give you hope and resilience.
As far as I know from @Freddd it's now a deadlock 'quintet' (including lithium now) rather than 'quartet' so that might allow a you a faster recovery if you decide to go down this route. Luckily I began titrating lithium almost 3 yrs ago, but if I'd known about it I would have taken it from the start.
I wouldn't have known how to do any of this without Fred's shared experience.
So far so good...
PS I tried the b12 oils but got nothing from them. I'm one of those that need injectable MeCbl and masses of it. Am really hoping the lithium improves that further.