Overwhelmed, looking for some simple direction

[M Paine]

I've had a read through some of Rich and Freddd's various posts. I have to say, it's overwhelming, and raises a lot of questions and a bit of skepticism. One question would be, why is there such a void when if comes to clinical studies in this area?

That said, I have always tested low for B12 in blood tests, and have had some positive experiences with sub-lingual B12 drops. After using sub-lingual drops of B12 daily for 12 months, I had another test and which was still low. I've more recently been jabbing myself once a week in the leg with intra-muscular shots of B12.

I'm interested in trying other forms of B12, as I am cautiously curious if there is something to it.

Does anyone have a simple protocol and set of supplements which wont break the bank? I'm looking to replace the Sub lingual B12 drops, in favor of one or two other supplements.

Help appriciated,
thank you.

 

[ahmo]

One question would be, why is there such a void when if comes to clinical studies in this area?

The same reason there's a void of clinical studies in all aspects of ME.
I'm pasting below something recent, the only one I've come across.

There are links in my signature to several versions of Freddd's Protocol; that is, long and annotated, brief, extras. For beginning methylation understanding, see Methylation for Dummies, also in my sig, or check Caledonia's signature line for many docs and vids re methylation therapy.

Here's a conversation re injecting. Here's Fred talking about dosage and method. A thread re inhaling B12, and another about transdermal.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124648 Published: April 22, 2015 (Unfortunately they used folic acid)

Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia

Results

Good responders had used significantly more frequent injections (p<0.03) and higher doses of B12 (p<0.03) for a longer time (p<0.0005), higher daily amounts of oral folic acid (p<0.003) in good relation with the individual MTHFR genotype, more often thyroid hormones (p<0.02), and no strong analgesics at all, while 70% of Mild responders (p<0.0005) used analgesics such as opioids, duloxetine or pregabalin on a daily basis. In addition to ME, the higher number of patients with fibromyalgia among Mild responders was bordering on significance (p<0.09). Good responders rated themselves as “very much” or “much” improved, while Mild responders rated “much” or “minimally” improved.

Conclusions

Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia. It’s important to be alert on co-existing thyroid dysfunction, and we suspect a risk of counteracting interference between B12/folic acid and certain opioid analgesics and other drugs that have to be demethylated as part of their metabolism. These issues should be considered when controlled trials for ME and fibromyalgia are to be designed.

 

[Johnmac]

I've found the Freddd Protocol has worked well for me so far - including tons better energy, dropping medicine doses, stabilised gut, etc. There are a few elephant traps - e.g. potassium deficiency, the need to ramp up doses for a bit. But if you can master them it's not too hard. There isn't a single simple explanation of the FP that I have seen (including Freddd's writings). But there are a lot of people here who know the ropes & will probably be happy to help out.

There are presumably no clinical trials on all this because the clinical trial process has been subverted by Big Pharma. I was once a staunch defender of clinical trials, but reading Dr Ben Goldacre's Bad Pharma put an end to that.

 

[whodathunkit]

I inject methylcobalamin subcutaneously every day, and it works well for me, without the ouch of intramuscular. I don't consider it a "jab" any more since I mostly don't feel it at all (literally, no sensation on most sub-q injections and a very tiny "pinchy" sensation on others) and it's just part of my morning routine, like making coffee is for other people. It's better than coffee! Plus, sub-q supposedly doesn't clear the system as fast. I used to do intramuscular but didn't like them at all. They hurt every time and left me bruised up on my legs so I couldn't wear shorts. Sub-q I do on my abdominal area where it doesn't show, with tiny gauge insulin needles, and it usually doesn't leave a bruise there, anyway. Maybe a small one once in a while.

So perhaps doing sub-q instead of intramuscular would help you...? I find the economics and efficacy of injections v. the trouble of other methods (large dose sublingual is questionable for oral health and transdermal can be messy, etc.) to balance out. YMMV.

Good luck!

 

[Tammy]

Does anyone have a simple protocol and set of supplements which wont break the bank? I'm looking to replace the Sub lingual B12 drops, in favor of one or two other supplements.

Are you specifically asking about supplements for methylation or just in general? I am curious what form of B12 you were using.? I am not following Rich's or Fredd's methylation protocol.......but I do think that B12 is important.

 

[Jonathan Edwards]

I've had a read through some of Rich and Freddd's various posts. I have to say, it's overwhelming, and raises a lot of questions and a bit of skepticism. One question would be, why is there such a void when if comes to clinical studies in this area?

Your scepticism is well founded, I think. There is no scientific sense in these protocols and no evidence base. The void in terms of clinical studies reflects the fact that nobody wanting to know real answers takes this seriously and the people selling the supplements would rather not know the real answer, I suspect. Keep your money would be my recommendation. There is no evidence that methylation has anything to do with ME.

 

[Maria1]

I'm finding this thread helpful. My brain fog hasn't let me get to grips with methylation despite trying to have a look at the 'easy' guides.

I have been low in folate, b12 and ferritin for a while so supplementing here and there. I'm a long time vegetarian who didn't look after my diet for years. I added zinc and potassium in as I guessed I might be low in these too, and it couldn't hurt to take some, also magnesium. B12 and ferrous fumerate made a big difference to me and I've been taking folate for ages on and off.

I can't process information now, but I got worried after reading stuff on here that I might be actually doing myself harm by supplementing as I happily was. 'Deadlock quartet' sounded like something from a horror film and I lost confidence that my supplements were helping me. I know that I don't have the mental ability to work it out. I also don't have the energy to track symptoms with supplements.

I felt I was doing a bit better on some simple supplements but I don't want to take them if they are doing me harm. Hearing stories of b12 and potassium interacting is scary but I don't understand enough. Nor do I have the energy to do anything like the simplest methylation protocol.

I'm not sure I'm making sense but I guess I'm surprised and relieved to hear @Jonathan Edwards say there is no evidence to back up the methylation stuff. Im going back to my vitamins without fear of deadlock

 

[M Paine]

Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia

Hello ahmo,

Yes, I have seen this paper. It is one of the reasons I wonder why more hasn't been done in this area. Another reason I wonder about B12, so the many anecdotal reports from people who experience perceived improvement. While I'm cautious with anecdotal evidence, the number of people who report positive results is worth an eyebrow raise or two.

 

[M Paine]

So perhaps doing sub-q instead of intramuscular would help you...? I find the economics and efficacy of injections v. the trouble of other methods (large dose sublingual is questionable for oral health and transdermal can be messy, etc.) to balance out.

Thank you, I'll ask my doctor next time about sub-q. I don't mind the intra-muscular, however I find that sometimes I hesitate a bit, and a couple of times I haven't jabbed deep enough, requiring a second attempt.

 

[M Paine]

Are you specifically asking about supplements for methylation or just in general? I am curious what form of B12 you were using.? I am not following Rich's or Fredd's methylation protocol.......but I do think that B12 is important.

Good question. I think my initial post didn't really make the distinction between Methylation and B12 in general. I'm asking more about B12 in general.

I am curious what form of B12 you were using.?

I am currently taking Methycobalamin Drops daily
Also I'm injecting hydroxocobalamin 1ml weekly


I'm interested in other forms to replace the Methycobalamin drops. I used them for years and my blood tests were still low. As hard as it is to judge, my opinion based on my own experience was that the drops may have been helping, and I perceived a slight difference when I ran out and stopped taking them for a while. Hard to know however.

 

[M Paine]

Your scepticism is well founded, I think. There is no scientific sense in these protocols and no evidence base. The void in terms of clinical studies reflects the fact that nobody wanting to know real answers takes this seriously and the people selling the supplements would rather not know the real answer, I suspect. Keep your money would be my recommendation. There is no evidence that methylation has anything to do with ME.

Thank you for your insight. I'm inclined to take your advice, as it's not really adding up for me. I suppose that there's no harm in keeping my B12 in the normal range for adults, but otherwise I'll put my energy elsewhere

 

[Johnmac]

After 30 years as a staunch defender & publiciser of the RCT process (book, journalism), I trust anecdotal reports more highly now. Not ideal, but probably the best we've got.

The Freddd Protocol (methyl-folate, methyl B12, etc) has done an awful lot for me in the short time. Of necessity, today I dropped my hydrocortisone, DHEA & T3 (thyroid) doses again - the fourth time in 6 weeks. Two months ago they were 6 times the present doses. My energy & functioning are much better now than they were on the recent, higher doses.

Via supplements & diet over the last 20 years I have much reduced blood-sugar problems, and have eliminated Meniere's Disease, ankylosing spondylitis, Restless Legs Syndrome, and most recently glomerulonephritis (kidney disease). Had I listened to the medical specialists who told me these diseases were probably irreversible, I may presently be in a wheelchair and/or on dialysis, or just dead.

Freddd has trialled his methods with hundreds of people (some of them here), & whilst the findings arising out of this were not peer-reviewed, neither was he paid off by a drug company to publish the good data, spin the ambivalent, and bottom-drawer the bad.

Dr Ben Goldacre spent many years (justly) ripping apart the spurious claims of alternative practitioners in a famous column in The Guardian. Eventually - in his 430-page book Bad Pharma - he turned his attentions on his own profession:

Drugs are tested by the people who manufacture them, in poorly designed trials, on hopelessly small numbers of weird, unrepresentative patients, and analysed using techniques which are flawed by design, in such a way that they exaggerate the benefits of treatments. Unsurprisingly, these trials tend to produce results that favour the manufacturer. When trials throw up results that companies don't like, they are perfectly entitled to hide them from doctors and patients, so we only ever see a distorted picture of any drug's true effects. Regulators see most of the trial data, but only from early on in a drug's life, and even then they don't give this data to doctors or patients, or even to other parts of government. This distorted evidence is then communicated and applied in a distorted fashion.

In their forty years of practice after leaving medical school, doctors hear about what works through ad hoc oral traditions, from sales reps, colleagues or journals. But those colleagues can be in the pay of drug companies – often undisclosed – and the journals are too. And so are the patient groups. And finally, academic papers, which everyone thinks of as objective, are often covertly planned and written by people who work directly for the companies, without disclosure. Sometimes whole academic journals are even owned outright by one drug company. Aside from all this, for several of the most important and enduring problems in medicine, we have no idea what the best treatment is, because it's not in anyone's financial interest to conduct any trials at all. These are ongoing problems, and although people have claimed to fix many of them, for the most part they have failed; so all these problems persist, but worse than ever...

The Protocol has worked very well for many; for others not. Will it work for you? Will it continue to work for me? I don't know. In Australia (last time I checked the data) 30,000 people were killed annually by "preventable hospital mishaps". By contrast, there is little risk to trying carefully titrated methy-folate & -B12.

 

[Tammy]

I'm interested in other forms to replace the Methycobalamin drops. I used them for years and my blood tests were still low. As hard as it is to judge, my opinion based on my own experience was that the drops may have been helping, and I perceived a slight difference when I ran out and stopped taking them for a while. Hard to know however

The only other form that I know of that I could recommend is Adenosylcobalamin.. I like both methyl and adeno. Like you, I can also notice the difference when I run out of B12.

 

[M Paine]

I'm inclined to think that a sub-lingual pill which dissolves would be better than the drops... I'll try and chase down methyl and adeno in sub-lingual pill form

 

[Tammy]

I'm inclined to think that a sub-lingual pill which dissolves would be better than the drops... I'll try and chase down methyl and adeno in sub-lingual pill form

I much prefer the drops myself.