A zombie
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lyme disease
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It was induced by emotional stress I fear...
I knew about this illness before, because a relative has it, so I understand what this is when my blood flow is completely shut down suddenly. But I didn't know about this no-sleep-thing, I thought you would always sleep very long instead of nothing at all. I could sleep for 5 hours due to a medication now, but I'm not sure how to do it in the following years. I actually wish to sleept EVERY night.
I know, I know, I'm on it. Problem is in Germany there seems to be no chance to get cfs diagnosis if it did not start with an infection. For me it started after having a lot of stress.
The insomnia is still the most frightening symptom. I am fully dependent on sleep meds but they stop working after a short time so im desperate.
Vitamin B12 seems to have been a big contributor to my awful insomnia during my first 8 years of ME. Once I got to a theraputic level, sleep became much better.
@ahmo, I know we're all different, but can you tell me what your personal therapeutic level is? And how did you know it was the right level for you? Also, how much folate (methyl, etc) did you find you need to take to balance the B12?
Thanks in advance.
Dan
Sorry Dan, didn't see this before. It was a lot of B12. I've gone through so many types, and I have such poor memory...but initially I think I was taking 3 B12 tabs sublingually 3x/day. I got there from Freddd's protocol.Tagging @ahmo again, hoping you'll reply. Thanks.
I’ve just re-read Martial/Todd’s post of a comment Freddd made re raising folate levels. slowly and carefully.
I searched for hours to find that definitive a statement a few months ago. In the end, my brainpower could only manage to ask what I knew at the time was a weird and missing-the-point question, about the relationship of folate to B12. I was desperate to understand how to go about increasing my dose. Prior to this, a year ago, I had experiences from both increasing B12 and increasing folate independently. As I recall, in both cases I lost hair and my scalp became covered with small scabby outbreak. At the first, and worst episode, I was sure I was ‘detoxxing’, because I’d just begun high zinc and other mineral intake. I lost handfuls of hair.
I notice my conversation w/ Freddd, quoted below, was 3 months ago, and I was taking 1.1mg Mfolate. With the instructions Freddd gave, quoted below, I began increasing my dose by 200-300mcg every day or 2. My symptoms narrowed down to a few easily observable ones: a bit of acne, sores at my occiput, scabs on my head, hair loss. I notice now that I can have hair loss in one part of the day, and not in the other. It’s that rapid. The same with the other symptoms. Think epithelial. Not long before the conversation I quote below, I’d asked for help re recurrent blood blisters in my mouth. Freddd responded that he’d no experience, but to think epithelial. That was my wake-up call. I was ready to bust through my mental barriers.
I’d been very conservative in following Freddd’s protocol because I kept reading Rich VanK’s injunctions about it, his concern that the high doses were peculiar to Freddd’s genetics. I repeatedly tried all the elements of the SMP, over a few years, long before knowing there was a forum here. It never worked, I no longer expected anything much from B12 or folate. I searched and re-searched over weeks, when my brain and arms were still very much impaired, to work out whether the correct carnitine was ALCAR or fumarate, LCF. I had ALCAR on hand, that certainly didn’t do anything. And because I just couldn’t find the information, I decided fumarate must be the one I shouldn’t take and so went on to another form. When I took my first dose of LCF, Brighten, quicken, enliven, lights-on are the only way to describe it.
So I’ve continued pushing up based on my symptoms and using self-testing for setting doses. Today I’m at 13.9 mg Mfolate, dividing doses at early AM, midday, bedtime. Inconceivable to me 3 months ago. I’m taking 7.5 mg AdenoB12 , never self-test to go beyond that. MB12 is 15-16mg. I take 500mg L-Carnitine Fumarate, PM/midday.
Cutting my B vits down to very low doses has also been a boon for me. Not only did this stop the insatiable need for potassium, as Freddd said it would, but it eliminated a big sulfur burden for me, freeing up the residual holdings in my 2 formerly-frozen shoulders. I’m now taking what’s essentially a 12mg B Complex BID. I would have laughed at the thought that 25 mg B vitamins had any benefit in the days I took high B’s to calm my nervous system.
So how am I? I’m calm. For the first time in my life I’m calm. After a lifetime of seeking. Before I got to the B12/folate, there was eliminating gluten and dairy, correcting the minerals, removing sulfur and histamines. Detox of microbes and metals is ongoing. But clearly since the full-on B12 protocol there is no longer any form of insomnia, first time in my life. My head space has never been more clear. My cognition is not what it was, but frankly, I now doubt everything about it in the past. I see now how much tendency I had toward ADHD. Luckily I’m old enough to have eaten well and lived cleanly. I’m not able to “be in the world”, but I’ve come to relish my reclusiveness. My overall resilience is increasing. My nervous system is no longer in over-drive. I’d been taking hypothalamus and adrenal glandulars 2/day for 2-3 years. That’s now reduced to 1 each. I’ve reduced my thryoid rx. I can finally meditate again, which was impossible for 2 or 3 years. I now see how much my entire life was under-pinned by profound B12/folate deficiency.
Re B12, I’ve found that when I get symptoms from “over-methylation” after increasing folate....euphoria/hyper, weepy eyes...not quite draining, but thicker than tears, the other night I had tremendous itching in the webs between my fingers...I take a 1mg ET MB12 immediately, and the symptom clears, almost immediately. I think this must be where Ben Lynch advises niacin to tone things down. For me B12 does the trick. Generally this dose becomes part of an ongoing increase of B12, but not always
[Note: I just realized my volubility in this post is, in fact, partially a result of post-folate-increase euphoria. ]
@Kathevans I've been using Source Naturals FMN for some years. I split 1 tab, take 1/2 AM/PM. I started it to help w/ histamine, interesting to see it's role w/ B12, folate. Good luck.