• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Huge doses of folate and B12 with no effects on sleep patterns

Messages
43
I've been on Fredd's protocol for 21 days and felt improvements in RLS (I'd say next to remission), shortness of breath and something in my insomnia, but none in my major problem I deal with, idiopathic hypersomnia and severe brain fog. I keep sleeping 15h/day, unable to remember what I said/read two minutes ago and never really awake, always in a constant hangover.

The point is that I've increased hugely the dosages of the supps and I keep not having any reactions nor minimum effect on my wakefulness.

I've been currently taking:
-30mg of Mb12 from Kirkland
-8.5mg of folate from Life Extension
-Two-per-day multivitamin from Life Extension
-400mg of SAMe from Nutralife (started yesterday)
- 600mg of potassium gluconate 2x/day

(Yes. I'm pretty insensitive to everything even in huge doses since I got sick 8 years ago)

The first 10 days of taking Mb12 and AdB12 had curious effects on me. I felt a lot more awake with both of them, but for at most an hour after dissolved in my mouth. Afterwards, this effect wore off and I don't feel anything immediately when taking either form now. Tried LCF six or seven times without any response and SAMe only gave me partially back, in these two days taking it, the RLS and twitches on the throat.

Opinions and reports of minimally similar experiences are very welcome.
 
Last edited:

Pearshaped

Senior Member
Messages
580
The protocoll does not work for everyone, and the high doses could deplete you of B2 and others.

Since you have hypersomnia I suggest you try adeno B12 from Seeking health.
 
Messages
43
The protocoll does not work for everyone, and the high doses could deplete you of B2 and others.

Since you have hypersomnia I suggest you try adeno B12 from Seeking health.
It doesn't work for me anymore sadly. But when it did, it lasted an average of 50 minutes.

According to what you have seen, should I try other treatments if non responder after a month? After so long being a guinea pig, I sincerely don't even know what else to try.
 

Pearshaped

Senior Member
Messages
580
I dont know your story, but I see from posts fatigue and hypersomnia is your main problem ? Is that correct ?
Problem is this symptom could be anything, have you been tested for major ilnesses ?
-sleep apnea
-anemia
-tumors, cancer (have you lost weight?)
- try to think of when it has started.. was there an event (infection, immunization,)

its my guess that the protocoll you are on seems not helpful to you, you could wait and try a few days longer but after a month you should notice if its working.
What comes to my my mind is Magnesium and B2 which are (in my opinion) both a underrated when it comes to energy production. another reason could be that you need more folate than B12 (like me).
Have you seen Hips Roadmap to treatment and testing ?
 
Messages
43
I dont know your story, but I see from posts fatigue and hypersomnia is your main problem ? Is that correct ?
Problem is this symptom could be anything, have you been tested for major ilnesses ?
-sleep apnea
-anemia
-tumors, cancer (have you lost weight?)
- try to think of when it has started.. was there an event (infection, immunization,)

its my guess that the protocoll you are on seems not helpful to you, you could wait and try a few days longer but after a month you should notice if its workin
Have you seen Hips Roadmap to treatment and testing ?

I read this roadmap 4 years ago and was tested at least half of the exams included there, the other half isn't available in my country. After more than hundred exams I did up to now, the unique real abnormality found was in the MLST, it was idiopathic hypersomnia (basically a narcolepsy diagnostic without any visible reason explaining the excessive sleepiness). Although for very long I thought that it had started when I was fourteen, I see the photos nowadays of when I was a child and I was sleeping in most of them. My family says the same about my childhood; but I'm not sure my sleepiness is as bad as it is now. I'm sure though that my brain fog is as insane as it was when I was a child, probably a genetic trace of my mom, who also deal with a bad brain fog, but not excessive sleepiness.

Curious fact discovered yesterday is that I react really well to lithium and badly to TMG/SAM-E. Based on the tables of symptoms between over and undermethylators, I seem to be in the first group.

PS.: Ancestry and 23andme are no longer available for my country.
 
Last edited:
Messages
43
Yes. I did a Multi latency sleep test and was diagnosed with hypersomnia. Never did though the HLBQ test, since it will not change anything at this moment.