Staggering Incompetence

Judee

Psalm 46:1-3
Messages
4,590
Location
Great Lakes
Should I still go to this appt?
I think as long as you don't have great expectations and don't feel emotionally vulnerable right now, it should be okay. ??? (Also if you don't think it will crash you.)

@lenora had a very compassionate neurologist and is mourning his recent passing. :( That tells me there may be some doctors out there like that.

The only other negatives I can think of atm are if he would put something on your health record that you don't want and also if you're going to get a huge bill.

If you decide to go and are okay with doing so please let us know how it went afterward.
 

sunshine44

The only way out, is through.
Messages
1,207
my husband who is 78 just got diagnosed with a congenital heart defect..genetic. So that took 78 years for anybody to notice.

Wow.

A doctor not in the US. So far, every doctor we've seen here, is far more competent and thorough than any doctors in the US.

One reason I think is: they actually perform tests. My baby granddaughter got more blood work than I have ever received in a lifetime in the US.

Now, soon, I am going to have to visit one of them, myself. So we shall see what they think about somebody as messed up as I am.

Woowwww rufous.
Just wow.
What a backwards system we live in here in the USA.
 
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12
Did you happen to check during your research if red/and nearinfrared LEDs without UV would be able to destroy B12 as well?
I've just been in touch with Arnika Apothecary in Germany. They are an often quoted source of methylcobalamin ampules. Before ordering from them, I inquired as to their light exposure precautions during production. This is their response:

"We manufacture the methylcobalamin ampoules in our clean rooms. These are of course protected from direct sunlight. We do not use any other special light protection during production. After production, the ampoules are packed in paper boxes and are therefore protected from sunlight. They should only be removed immediately before the injection."

I have a paper called Methylcobalamin and Light from Compounder's International Analytical Library (located in Colorado). In the paper, we find this paragraph:

"When formulating methylcobalamin, many are aware of its sensitivity to light but may not know just how sensitive it is. In our lab we carried out an experiment to see just how sensitive a typical formulation might be to typical interior lab lighting. The formulation we selected as our test sample was one containing methylcobalamin 1000 mcg/mL in normal saline plus benzyl alcohol 2%. We assayed the sample to check its potency and found it to be 985mcg/mL so it was 98.5% potent, thus meeting requirements. We then exposed the solution in a clear glass vial for 5 minutes under our lab’s typical florescent lighting, then once again tested it for potency. The potency was now at 54.4%, a 44.1% decline! Much of the active had converted to hydroxocobalamin (B12a). After another 5 minutes exposure, now a total of 10 minutes, the potency was now down to 30.8% a 67.7% decline from the initial potency. After a total of 15 minutes, the potency stood at 15.2%, a total decline of 83.3% from the starting point! Clearly, methylcobalamin is VERY light sensitive and easily converts to hydroxocobalamin."
Source: http://compounderslab.com/application/files/8715/4119/3589/Methylcobalamin_and_Light_10-18.pdf


I believe that Arnika's gross incompetence with regard to their production of MeB12 is absolutely the pharmaceutical industry standard worldwide. As a result, all injectable MeB12 sold on the market, even via prescription, is almost completely impotent.

In contrast, I had a source of MeB12 powder which I was able to mix with saline solution just prior to usage. This was extremely potent and gave me full health. By about the 10th day however, it would lose all potency despite light protection. My experience here (repeated dozens of times) goes against research saying that MeB12 is stable for 180 days once liquified.

My conclusions are:
  • Most MeB12 available on the market is nearly worthless due to a simple lack of understanding of the light sensitivity of the molecule. This conclusion is backed by a major manufacturer today revealing that they think that keeping it out of sunlight is sufficient!
  • Multiple health conditions that can be treated with high potency MeB12 go untreated do to this staggering incompetence in the pharmaceutical industry. For example, MS, CFS, Dementia and Alzheimer's. There are also anti-aging implications.
On a related noted, the leading cause of death in the U.S. is heart disease. Heart disease is completely preventable, was solved by Linus Pauling (Nobel laureate) more than 50 years ago, yet remains the LEADING cause of death in the U.S. I share that as another example of a staggering failure of the medical industry.

Conclusion

I had a period of 9 months where I was able to obtain a very high quality MeB12 powder to which I would add saline when ready to use. I experienced full, robust health during these 9 months. 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.

I strongly suspect that the production of pure, sterile MeB12 for IM injection, has the potential to be a major healing agent for many people (possibly due to the CSF saturation that is enables), but that it is simply not available to the public. Furthermore, existing laws restrict the sale of this pure powder to pharmacies (compounding labs) who themselves do not know how to properly handle and produce a light protected, liquid form for injection.
 

lenora

Senior Member
Messages
5,021
Personally, I think most vitamins, herbs and meds are exposed to way too much heat, cold and truly aren't what we are expecting.

Still, until a perfect delivery system arrives, we have no choice but to use them. B-12 would be among those substances more easily upset by their present delivery system.

There are never going to be any guarantees on any of these items, and we can only use them in good faith. Yours, Lenora
 
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70
Hi everyone, a little update: I have the B12 I've been looking for. Or at least I think I do. I am waiting on a clean lab to process it into individual dosages. Once that's done and I am able to try it out on myself and confirm, I'll be ready to start making it available to others. Maybe as soon as next month. Fingers crossed.

I'm also intending to publish an entire protocol based on everything I've learned and figured out - which is a significant amount of information. I actually started getting into some exceptional health a couple weeks ago and then had a heart attack unfortunately. As my neurological function really began coming back online, the stress of my financial situation hit my newly healed nervous system (apartment eviction) and my heart seized up. So it's been back to bed, but I'm getting stronger again with some help and support from friends.
 
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70
Did you happen to check during your research if red/and nearinfrared LEDs without UV would be able to destroy B12 as well?
Hi, I recommend reading the pdf that is in the OP of this thread. Taking a cue from that, I ordered the red light they recommend and have been using it. It seems to work without degrading the material.
 
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70
One more update: because of the heart attack, I never posted here how my visit with the neurologist went.

He actually did not frown on the concept of ME at all. He said that some people can have autoimmune issues in the CNS/CFS. I don't have the energy to relay the entire content of the meeting right now because we covered considerable ground in 45 minutes. However, there was an interesting coincidence that happened:

The day before the meeting, I doubled my intake of B2 with some very good result. And while we were talking, he mentioned that they sometimes use B2 to treat chronic fatigue and chronic pain, particularly because it has no toxicity.

So, I went from taking 50mg/day to 100mg/day using my "staggering" principle. I take one on waking and one with my first meal (breakfast). I do keto/IM so that meal is at 1:30 pm. B2 seems to provide a boost in fat metabolism. When I eat a (cheddar, keto) pizza for dinner and the B2 is there, my body actually gets hot from the metabolism of the fat.

This is the B2 I like: https://amzn.to/495B95F

I probably actually need to write a paper on my discussion with the neurologist.
 
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70
Does anyone have an extra SV Compounding Aseptic Containment Isolator laying around that they're not using? ;)
I have the material but haven't found anyone yet who can divide it up into individual dosages/vials. I had a clean lab lined up but they bailed on me. My sense is they didn't smell enough money in it.
I've been looking for a piece of equipment to be able to do it myself. Image attached.
 

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Judee

Psalm 46:1-3
Messages
4,590
Location
Great Lakes
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Messages
70
Not sure if this is the same thing but if so maybe a little less expensive (though I wonder how much freight would be on one of those): https://www.ebay.com/sch/i.html?_fr....m570.l1313&_nkw=Pharmagard+Isolator&_sacat=0

Found that from this VIDEO.

I don't know how those work but you probably would also want one you can get the extended warranty on maybe since they're used. ???
Thank you Judee! That's a great video. And yes, getting one used seems a possibility. I'm spending a lot of time praying right now, to be graced with a way to be able to get this done.
 
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70
Hi everyone, I am having trouble finding a microscoop with an approximately 20mg capacity. I need either a sterile, single use, disposable one, or a stainless steel one that I can sterilize. I'm having a hard time finding anything like this. Even with the scientific supply companies.

The closest is something like this, but this is not sterile: https://amzn.to/3T7iT6g

I found these that I thought would be perfect, but they are actually huge, despite looking small in the picture: https://amzn.to/47G8SBE

Everyone has been so helpful here, I thought I'd mention it. Thanks.
 
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70
We have a new pharmacist on here. Perhaps he knows a place to buy them? @CFS_RPH?

Or you could call a compounding pharmacy and maybe ask as well. ?

Edit: https://healthnatura.com/microscoop-stainless-steel/ (IDK?)
Thanks Judee! I did also find that one from healthnatura. I ordered it just a little while ago.

I also just designed one and will be getting quotes tomorrow on 3d printing it in stainless steel. This is 5mm wide by 2mm tall with a scoop cut out.

Screenshot 2023-12-03 at 8.08.16 PM.png
 
Messages
20
Location
London, UK
How is this project going @ironlion37 ?

I have also been on the exact same tangent for months and have been using that pdf from Compounders Lab as a reference. Only just came across your post here when searching around Google for some info today.


Currently subsisting on 3 ampoules of Eisai methycobal per day. I have bought pure Hydroxy powder from a Chinese lab in the past, but that was before knowing how much better Me & Adeno suited. Interested to see where you are at with this.
 
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Hi @tooth, after months of trying to find a lab that would divide up the material for me, with no luck, I spent most of December building my own sterile environment and divided up the material myself.

The work was successful and I am doing a lot better. I just got a hard reminder though of how important liposomal glutathione is for me - as someone who regularly injects high-dosage MeB12.

Edit: I actually ended up dividing the material into single dosages. This means that for each injection, I add the saline about 20 minutes before. This makes each injection as fresh as possible.

That came out of a difficulty finding sterile 10ml vials to use. But I found some sterile, plastic, pyrogen free 2ml vials that work well.

IMG_8559.jpg
 
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If glutathione is helping you, be sure to give a trial to continual-g. Take a good dose like 4 capsules at once.

You should seriously read this whole thread: https://forums.phoenixrising.me/threads/documents-by-rich-van-konynenburg-parts-1-7.11488/

Do "share" and select the kindle app. It will allow you to read it all as a book.

We are on a rough spot right now. Hydroxycobalamin 1500mcg injections 3x day made a significant difference for many months but then she went back to baseline again…
Hi @Algo, missed this reply somehow. I will read that thread as you recommend. I will also try continual-g at some point.

Regarding your comment about going back to baseline again, my experience is that would be a depleted cofactor causing that.
 
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@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?
I’m reading this thread late because I just joined this forum. But injections of high dose cyanocobalamin (5000 mcg three times a week) enabled me to return to work (get off disability) 30 years ago.

Back then, it was pretty common knowledge that high dose B12 injections were one of the most effective treatments for this condition. It looks like not many people are doing them any more, and I’m curious why.
 

lenora

Senior Member
Messages
5,021
Re: Compassionate doctors. As Judee stated, I did have a wonderful, compassionate neurologist who did so much for me over the years (approx. 35 yrs.).

May I make a couple of suggestions about going to a fairly new doctor, especially one that you want to be helpful. The first appointment is almost always "strange".....he/she is new to you and you to them. By approximately the third visit you know each other better and feel comfortable in each other's presence.

Don't overload your doctor on the first visit. Give the person your worst symptoms...I would suggest no more than four, and perhaps three the next time....until you feel that what you need from him/her has been treated.
There are really no cures (and I have a number of other neurological illnesses). I remember that I was on shots that I gave myself of B-12 probably 3-4 years ago. In all honesty, I couldn't tell if they helped me or not. I would be willing to try them again, but I'm still getting to know my new neurologist and she may be amenable to giving me a prescription on the next visit.

You generally have a "gut" feeling about whether or not you can work with a Dr. Some, it doesn't matter....but for those you see more often, neurologists, cardiologists and the like, it's really nice to have a good relationship. I'm often surprised at how taken aback some medical personnel are when I ask how they're doing? I don't think they hear that as often as they should. To be my great surprise, they'll often tell me about something that's hard for them at the moment....or even a happy event. Either way, I'm fine with it and it's the beginning of a relationship. However, it usually doesn't happen on the first visit.

No, I'll never have the one I had with my old neurologist, but the young ones are eager to please the patient, are knowledgeable and appreciate it if the patient is also. I don't mean in a boastful, put down way....just ask one or two intelligent questions. Thus far I'm doing OK (I'm 77), but I must shed some doctors, I just happen to need them for other conditions. This wears me out big time....and I'm going to talk to them about it.

In the meantime I'll try Vit. B-12 shots again....who knows? I may notice a difference. If anyone has any input about rather severe osteoporosis, I'd like to hear it. I'm off all medications, but breaks continue and I'm taking what I believe are appropriate vitamins, enzymes, electrolytes etc. I'm having a lot of pain from the pelvic fractures of approximately 2 years ago (and several vertebrae). Thanks and I wish each of you better health. Yours, Lenora
 
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13
Re: Compassionate doctors. As Judee stated, I did have a wonderful, compassionate neurologist who did so much for me over the years (approx. 35 yrs.).

May I make a couple of suggestions about going to a fairly new doctor, especially one that you want to be helpful. The first appointment is almost always "strange".....he/she is new to you and you to them. By approximately the third visit you know each other better and feel comfortable in each other's presence.

Don't overload your doctor on the first visit. Give the person your worst symptoms...I would suggest no more than four, and perhaps three the next time....until you feel that what you need from him/her has been treated.
There are really no cures (and I have a number of other neurological illnesses). I remember that I was on shots that I gave myself of B-12 probably 3-4 years ago. In all honesty, I couldn't tell if they helped me or not. I would be willing to try them again, but I'm still getting to know my new neurologist and she may be amenable to giving me a prescription on the next visit.

You generally have a "gut" feeling about whether or not you can work with a Dr. Some, it doesn't matter....but for those you see more often, neurologists, cardiologists and the like, it's really nice to have a good relationship. I'm often surprised at how taken aback some medical personnel are when I ask how they're doing? I don't think they hear that as often as they should. To be my great surprise, they'll often tell me about something that's hard for them at the moment....or even a happy event. Either way, I'm fine with it and it's the beginning of a relationship. However, it usually doesn't happen on the first visit.

No, I'll never have the one I had with my old neurologist, but the young ones are eager to please the patient, are knowledgeable and appreciate it if the patient is also. I don't mean in a boastful, put down way....just ask one or two intelligent questions. Thus far I'm doing OK (I'm 77), but I must shed some doctors, I just happen to need them for other conditions. This wears me out big time....and I'm going to talk to them about it.

In the meantime I'll try Vit. B-12 shots again....who knows? I may notice a difference. If anyone has any input about rather severe osteoporosis, I'd like to hear it. I'm off all medications, but breaks continue and I'm taking what I believe are appropriate vitamins, enzymes, electrolytes etc. I'm having a lot of pain from the pelvic fractures of approximately 2 years ago (and several vertebrae). Thanks and I wish each of you better health. Yours, Lenora
Thanks, Lenore!

Curious what dosage you used for the B12 shots in the past? I initially tried 1000 mcg and it didn’t help at all. When I went up to 5000 mcg three times a week, I had great results. That was with cyanocobalamin. Sometimes when I knew I was going to be busier than usual, I increased the frequency, and it would help me to get through it without PEM.

Regarding osteoporosis: I have had osteopenia for 25 years and crossed the line into the osteoporosis range about 7 years ago. I have been addressing it with bio-identical hormones (estrogen, progesterone, and a low dose of testosterone) and walking. Avoiding biophosphonates. At my last bone density test, my bone density had improved and my spine was now in the normal range, with hips still just barely in the osteoporosis range. I think testosterone is key!
 
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