Staggering Incompetence

[Judee]

@IThinkImTurningJapanese, do you know of any pure sterile methylcobalamin powder in vials that @ironlion37 could get a hold of from Japan? Any sellers that ship internationally? (ithinkimturningjapanese hasn't been on the site since Dec of 2022 so I don't know if he would respond but thought it was worth a try.)

Or @Josui, maybe?

 

[Hip]

@ironlion37, a quick Google search on "methylcobalamin powder" reveals a few suppliers. Have you tried injecting any of these?

I am not sure whether these products are pure B12, or whether there might be some fillers which would make it unsuitable for injection. Non sterile products can be made sterile just by passing through a 0.22 μm filter (these filters can be bought on Amazon).



This post lists some methylcobalamin injection sellers.

 

[Hip]

@ironlion37, when you discovered 5 years ago that intramuscular injections of high quality methylcobalamin from Oxford Biosciences took you from a bedbound state to able to work, did you communicate your discovery to other ME/CFS patients (via online forums, FB groups, etc)?

I am just wondering whether your response to this high quality methylcobalamin is idiosyncratic, or whether other ME/CFS patients derived benefits from it. Did any other ME/CFS patients try this Oxford Biosciences B12, to your knowledge?

 

[Hip]

The transdermal oils (4-6 pumps once or twice a day). (the methyl + adeno product)

When using Dr Greg Russell-Jones's B12 transdermal oils, do you apply them in near dark conditions, and then place some dark clothes over the skin area? This is what I do, as a precaution, because I think these oils take an hour or so to absorb through the skin, and if the methylcobalamin is exposed to light during that time, it might undergo photolysis and break down.

The oils used by Greg are water-in-oil micro-emulsions, which means they are tiny bubbles of water (in which the B12 is dissolved) suspended in oil. So in effect, these oils are an aqueous solution of B12.


You might consider contacting Greg through his website, and tell him your story. He runs a Facebook group for treating ME/CFS with B12, and often answers people's questions at length. He might offer some insight or suggestions for you, and might find your story interesting.

He considers himself an expert on B12 and on micro-emulsions. Greg believes that ME/CFS is just caused by a functional B12 deficiency (which sounds implausible to me, but I don't deny that some patients benefit from B12).

 

[Judee]

Did any other ME/CFS patients try this Oxford Biosciences B12, to your knowledge?

@CSMLSM was using them too and getting benefit though recently he mentioned that he was not doing as well and thought maybe he had caught covid though I wonder if the change of the manufacturer had something to do with his set back as well.

 

[SWAlexander]

ironlion37​

Question about MeB12 and MeB12 powder.
Would you know if any of both include B9? I couldn't find any detailed answers online.
My B12 is nearly perfect but a separate test showed very low B9.
Thanks

 

[SWAlexander]

I can no longer obtain this powder and the supplier has intensely refused to reveal where it came from and has claimed that the supplier went out of business during the pandemic.

This is very important information. Thank you.
Have you tried to go on social media with your discovery?
Or do you have a blog I could post a link?

 

[ironlion37]

Update: I just found a source of B12 powder and have just messaged my doctor asking him to submit a prescription for it. It only comes in 10,000mcg vials. For me that is 2.5 injections and will not last a week. However, the first step is to give the product a try and check the quality. I'll be able to tell from a single shot if the quality is there.

The pharmacy told me they have a lab that can produce higher concentrations but that a monthly minimum would be required. They seemed to be hinting it would be expensive and that I would need to gather a group of patients together to cover the expense.

So, this is a possible way forward, thank God.

I do suspect that the price will be too high with this. They won't give me the price until they get the prescription. The long term goal is to be able to source and sell the powder for $1-$2/mg.

I will continue to post updates here. I expect it will take at least a week to receive this new vial to try.

IMPORTANT: If there are any U.S. doctors here with a medical license who have an interest in a novel treatment for CFS (with implications for treating chronic pain, dementia, Alzheimer's, depression, MS, and addiction prevention, treatment, and recovery) please contact me.

 

[Algo]

Do we just need one single prescription for lifetime access to the supplier, or do you need a prescription per vial?

1 usd per gram or per mg?

 

[CSMLSM]

@CSMLSM was using them too and getting benefit though recently he mentioned that he was not doing as well and thought maybe he had caught covid though I wonder if the change of the manufacturer had something to do with his set back as well.

I started taking it again and it made me better and there is nothing wrong with it.

 

[Judee]

Thanks for the update, @CSMLSM. I'm so glad it's still working for you. That's encouraging and I believe you however, for some reason it's not working as well for ironlion37 anymore.

People with ME do have sensitive systems (I'm one of them) so if he says something has changed and the company confirms it then I'm not going to doubt his experience and what he is telling us either.

 

[Algo]

I started taking it again and it made me better and there is nothing wrong with it.

He also posted on health unlocked months ago, and his postings are consistent. He can be wrong, though. But the vial he found and it worked, the fact that OB admitted to changed suppliers (which he didn’t know beforehand) seems to point to a very sensitive person. Sensitive in the sense that he really needs this particular chemical.

I’d say that, given his remarkable recovery, it is worth it to see if he is unto something. If he is more sensitive it is like he is seeing in color and we are seeing in grayscale.

 

[ironlion37]

Do we just need one single prescription for lifetime access to the supplier, or do you need a prescription per vial?

1 usd per gram or per mg?

Per mg. That error came back to me while lying in bed

Regarding how the prescriptions will work, it's too early to say. First I have to find something that works. Hopefully, I'll have this next candidate in hand by the end of next week.

Thanks for your comments about my sensitivity. You are right about the color/grayscale metaphor.

I'm fairly certain there are significant implications here for multiple branches of medicine and multiple neurological conditions. If I can get this worked out and get my health back, perhaps I'll have the opportunity to bring all this forward.

 

[catysue]

@ironlion37 are you sure you dont want to try Arnica’s product? They say they test the product after it is manufactured for its methylcobalamin content before releasing the product. I understand that you might still have the problem of it degrading over time like you had with your own mixture.

They do say they manufacture it with light protected processes

 

[ironlion37]

@ironlion37 are you sure you dont want to try Arnica’s product? They say they test the product after it is manufactured for its methylcobalamin content before releasing the product. I understand that you might still have the problem of it degrading over time like you had with your own mixture.

They do say they manufacture it with light protected processes

Hi @catysue, thanks for your thoughts. Last week I specifically asked them if they protect it from light during production. They told me they protect it from sunlight but that's it. Apparently they believe that indoor lighting is inconsequential. I started this thread with a link to a research document that definitively proves that to be wrong. Hence the title of this thread. I suspect it's possible that all handling of MeB12 by pharmacies (worldwide?) is being done improperly. Of course I could be completely wrong, but Arnika at least confirmed they are not taking the right precautions.

I'm not averse to trying their product, except for the waste of time and money which is building up for me at this point.

I have some other leads I'm following at the moment and have temporarily ruled Arnika out just because they confirmed they do not protect it from light during production.

It may also be important to mention again here that I require a high dosage (4mg/1ml) injection every 48 hours to be symptom free. I arrived at that by gradually upping the dosage over a period of 4 or 5 years. Once I hit 4mg/ml, I realized, "Oh, you mean, I can feel normal and energized all the time?!?"

 

[catysue]

Yeah I saw that study and I’ve also send it to Arnika. (They offer 5mg MeB12 injections btw).

I also mentioned the light. But yeah it’s unclear how long their process takes / how much light from a lamp actually gets to the product while manufacturing. But that they test the MeB12 content afterwards does seem promising?

They probably send you the same but I’ll copy their reply:
“
We protect methylcobalamin by preparing the batch for production in an amber glass batch vessel.
Filling is then done directly into amber glass bottles.
In addition, the content of the solution is determined after production so that we can be sure that the product contains the appropriate amount of methylcobalamin.

Our sterile laboratory is GMP certified. Both the storage of the raw material and the production are carried out protected from light. We do not have any machinery for manufacturing, as we manufacture on a pharmacy scale and not on an industrial scale. Therefore, I cannot give you an amount of light nor a time frame for possible light exposure. As mentioned before, we determine the content of methylcobalamin in the finished ampoules after production and, of course, we only release the batch if it complies with the requirements.

Translated with www.DeepL.com/Translator (free version)”

 

[ironlion37]

A few points:

1. From the research doc:

"Another series of tests was performed to determine the length of time methylcobalamin solutions could be left in amber glassware in ambient light. We found, to our surprise, even in amber glassware we have found some breakdown. Also, to our surprise, it isn’t very sensitive to heat. We were able to hold it in the dark at 80oC for several hours with minimal breakdown. It is, however, VERY sensitive to mechanical shock. It cannot be shaken, sonicated, or even rapidly mixed on a magnetic stirring apparatus. It can however, be swirled, slowly stirred, or rocked to help dissolve and mix."

Unfortunately, that's where their research becomes indisictinct. "Some breakdown" in amber glassware doesn't tell us much. The other important point though is the sensitivity to physical shock which becomes relevant when mailing around the world.

The only reason I'm being so critical is that I have experienced a certain B12 that was of very high quality. Unfortunately, I'm left to my own devices to try and find out what it was about that B12 that made it so good. The only thing I really know is that it was in powder form.

2. Are you using Arnika's methylcobalamin? Do you find it to be high quality? If so, perhaps I'll go ahead and order some to try.

3. I suspect that the best solution for me personally is the powder form if I can find it.

Thanks.

 

[Algo]

A few points:

1. From the research doc:

"Another series of tests was performed to determine the length of time methylcobalamin solutions could be left in amber glassware in ambient light. We found, to our surprise, even in amber glassware we have found some breakdown. Also, to our surprise, it isn’t very sensitive to heat. We were able to hold it in the dark at 80oC for several hours with minimal breakdown. It is, however, VERY sensitive to mechanical shock. It cannot be shaken, sonicated, or even rapidly mixed on a magnetic stirring apparatus. It can however, be swirled, slowly stirred, or rocked to help dissolve and mix."

Unfortunately, that's where their research becomes indisictinct. "Some breakdown" in amber glassware doesn't tell us much. The other important point though is the sensitivity to physical shock which becomes relevant when mailing around the world.

The only reason I'm being so critical is that I have experienced a certain B12 that was of very high quality. Unfortunately, I'm left to my own devices to try and find out what it was about that B12 that made it so good. The only thing I really know is that it was in powder form.

2. Are you using Arnika's methylcobalamin? Do you find it to be high quality? If so, perhaps I'll go ahead and order some to try.

3. I suspect that the best solution for me personally is the powder form if I can find it.

Thanks.

If it this that sensitive, what if the breakdown is happening while/due to the testing procedure to see if it has broken down?

 

[catysue]

A few points:

1. From the research doc:

"Another series of tests was performed to determine the length of time methylcobalamin solutions could be left in amber glassware in ambient light. We found, to our surprise, even in amber glassware we have found some breakdown. Also, to our surprise, it isn’t very sensitive to heat. We were able to hold it in the dark at 80oC for several hours with minimal breakdown. It is, however, VERY sensitive to mechanical shock. It cannot be shaken, sonicated, or even rapidly mixed on a magnetic stirring apparatus. It can however, be swirled, slowly stirred, or rocked to help dissolve and mix."

Unfortunately, that's where their research becomes indisictinct. "Some breakdown" in amber glassware doesn't tell us much. The other important point though is the sensitivity to physical shock which becomes relevant when mailing around the world.

The only reason I'm being so critical is that I have experienced a certain B12 that was of very high quality. Unfortunately, I'm left to my own devices to try and find out what it was about that B12 that made it so good. The only thing I really know is that it was in powder form.

2. Are you using Arnika's methylcobalamin? Do you find it to be high quality? If so, perhaps I'll go ahead and order some to try.

3. I suspect that the best solution for me personally is the powder form if I can find it.

Thanks.

Thanks for the quote! Yes that would make shipping (even nationally) a problem..

Yes sounds like powder form would be best.

I contemplated using Arnikas MeB12 (because I’m on the RnB protocol with the B12 oils and not noticing anything and I wanted to see if the injections would be different (different forms of b12 injections in the past did nothing), but then I came across your thread. So I don’t know yet.

 

[ironlion37]

Thanks for the quote! Yes that would make shipping (even nationally) a problem..

Yes sounds like powder form would be best.

I contemplated using Arnikas MeB12 (because I’m on the RnB protocol with the B12 oils and not noticing anything and I wanted to see if the injections would be different (different forms of b12 injections in the past did nothing), but then I came across your thread. So I don’t know yet.

I went ahead and ordered the MeB12 from Arnika yesterday. Figured I need to give it a try and see for myself. Pricing is good ($5/5mg shot) but the shipping is murder ($70). Not sure why it was so high.

Also waiting on some powder from a source here in the US.

Probably two-ish weeks arrival on both. Meanwhile, my life continues to slip away. I'm currently starting the process of looking into whether or not I can get on disability. Probably should have gotten on it decades ago. Didn't know what was wrong with me though. Unfortunately, as a child, my parents moralized my condition and even physically abused me for being tired. So I spent decades "trying to be a better person", thinking my tiredness was because I was a bad person. Very, very sad.

It's been a strange turn of events, to get completely better and then lose access to what made that possible.