Staggering Incompetence

[ironlion37]

We tried a squirt, about 5 to 6 hours later she had a severe pain flare. I have no idea if it was related. We will wait until it gets better and try a drop.

Any update on the Arnika injections?

Hi @Algo, yes, I did try the Arnika injections. I ordered the 5mg ampules. I've found that I can only inject 2mg comfortably. I did not find them to be any different than the high concentration MeB12 shots I ordered from a pharmacy here in the U.S.

 

[Algo]

Hi @Algo, yes, I did try the Arnika injections. I ordered the 5mg ampules. I've found that I can only inject 2mg comfortably. I did not find them to be any different than the high concentration MeB12 shots I ordered from a pharmacy here in the U.S.

But did they help like the original oxford powder?

Also, what happened when you went above 2mg?

 

[ironlion37]

But did they help like the original oxford powder?

Also, what happened when you went above 2mg?

They did not. When going above 2mg, there is a an uncomfortable sensation. I would partially describe it as a strain on capillaries. Noticeable in the fingers and kidneys. I'm not sure what's happening there, but if I keep it to 2 mg or under, that alleviates that.

 

[Algo]

They did not. When going above 2mg, there is a an uncomfortable sensation. I would partially describe it as a strain on capillaries. Noticeable in the fingers and kidneys. I'm not sure what's happening there, but if I keep it to 2 mg or under, that alleviates that.

So, besides the original OS powder, the next best option - although far from ideal - were the B12 Oils?

 

[Cipher]

They did not. When going above 2mg, there is a an uncomfortable sensation.

Do you have any experience with hydroxocobalamin? Since methylcobalamin can be broken down into hydroxocobalamin, maybe hydroxocobalamin is causing the adverse effects?

Another thing to consider is additives, which ones does Arnika's ampules contain?

 

[ironlion37]

So, besides the original OS powder, the next best option - although far from ideal - were the B12 Oils?

I've made a breakthrough. I'm moving it forward as fast as I can. I'm also on emergency rent assistance. Prayers are appreciated.
To answer your question, I found that I preferred the Jarrow 5,000mcg B12: https://amzn.to/48ekSek
Keeping those in the mouth, as many as 10-12/day got me out of physical pain. My problem with the oils is that they would take a long time to come on and then only last for a short while (>30mins). They're just not a good solution for me. Might be for others.

Edit: I'll add that methylfolate is an important part of my regimen. I've had heart pain for years and that makes it go away. Different subject, but somewhere along the way I figured out that B12 and methyfolate work well together in my body. I also avoid folic acid per Dr. Ben Lynch's advice in Dirty Genes.

 

[Judee]

Praying.

 

[Cipher]

Edit: I'll add that methylfolate is an important part of my regimen. I've had heart pain for years and that makes it go away. Different subject, but somewhere along the way I figured out that B12 and methyfolate work well together in my body. I also avoid folic acid per Dr. Ben Lynch's advice in Dirty Genes.

What dose & brand of methylfolate do you find helpful?

 

[Algo]

I've made a breakthrough. I'm moving it forward as fast as I can. I'm also on emergency rent assistance. Prayers are appreciated.
To answer your question, I found that I preferred the Jarrow 5,000mcg B12: https://amzn.to/48ekSek
Keeping those in the mouth, as many as 10-12/day got me out of physical pain. My problem with the oils is that they would take a long time to come on and then only last for a short while (>30mins). They're just not a good solution for me. Might be for others.

Edit: I'll add that methylfolate is an important part of my regimen. I've had heart pain for years and that makes it go away. Different subject, but somewhere along the way I figured out that B12 and methyfolate work well together in my body. I also avoid folic acid per Dr. Ben Lynch's advice in Dirty Genes.

Great news! you just keep taking one after the other or all at the same time?

 

[Algo]

I've made a breakthrough. I'm moving it forward as fast as I can. I'm also on emergency rent assistance. Prayers are appreciated.
To answer your question, I found that I preferred the Jarrow 5,000mcg B12: https://amzn.to/48ekSek
Keeping those in the mouth, as many as 10-12/day got me out of physical pain. My problem with the oils is that they would take a long time to come on and then only last for a short while (>30mins). They're just not a good solution for me. Might be for others.

Edit: I'll add that methylfolate is an important part of my regimen. I've had heart pain for years and that makes it go away. Different subject, but somewhere along the way I figured out that B12 and methyfolate work well together in my body. I also avoid folic acid per Dr. Ben Lynch's advice in Dirty Genes.

Also, be sure to check the thread on teeth and citric acid!

 

[ironlion37]

What dose & brand of methylfolate do you find helpful?

This is the brand I take: https://amzn.to/456MrU3
I cut those tablets into quarters and right now, I'm taking about one tablet per day, spaced out with 1/4 at waking 1/4 at bedtime and two quarters during the day.

 

[ironlion37]

Hi everyone, I have an update, part of which is that I'm little shell shocked today. I knew that this forum was about ME/CFS, but I had never really looked at ME (only CFS). Last night I got curious and looked it up. I saw it described as possibly creating a lower quality of life that cancer or MS, and I read the descriptions of the different types of ME.

I've been dealing with this my whole life and to finally see some kind of affirmation of what I've been going through is having a very deep effect on me. I was physically abused by my father as a teenager for being tired and needing rest. I missed one of my brother's weddings because of this. My family is wealthy and has gone on vacations to Europe while I have struggled with homelessness and eaten from food banks. It's all very intense. All of this is going through my mind right now.

That being said:

• I believe that I may have come up with an effective treatment for ME/CFS for some individuals. Perhaps it won't work for everyone, but it works for me and could possibly help others. I am in talks with a manufacturing lab to be able make available the necessary substance, and it seems to make sense to come up with a protocol to cover the complexities involved, because there will be variations for each individual. But there is a basic underlying principle that I've identified within my own body and am able to repeatedly and reliably create a healing effect.
• In reading about ME last night, it seems clear that ME is not well understood by the medical establishment. In my journey to get better, I've had to get underneath it in a sense, meaning I've had to familiarize myself with the functioning of various body systems and in doing so, I believe I have developed an understanding of what ME actually is and how it can be treated (or certain forms of it at least). As of right now however, my understanding only extends to my own body and how effective this insight will be for others is unknown.
• I'm meeting with a neurologist next week and will be discussing ME with him and picking his brain to get a better sense of what the understanding is within his field. I don't see this having any effect on my findings; I'm just interested to hear his take on the pain and suffering I've been going through. After reading about ME last night, I also want to ask my PCP why he has not offered up a diagnosis of ME already.

As far as sharing what I've come up with, I'm going to be presenting all this information in stages and as I've said I'm moving forward as fast as I can. There are some steps that are taking longer than I'd like (that are beyond my control). If you would like to be involved in the process of potentially testing this out and/or just receive updates on any progress, I've created a newsletter list here: https://healthinsightsllc.com/me-cfs-updates/

 

[ironlion37]

Great news! you just keep taking one after the other or all at the same time?

Sorry @Algo, just seeing this. I just take one after the other. Started to get some stomach sensitivity after a while, presumably from the other ingredients.

How are things on your end? Any updates?

I will mention that liposomal glutathione has been very important for me. I stopped taking it a few days ago and have begun to feel poorly again. I have to go buy some more tomorrow and see if it snaps me back to health. It seems a key piece for me.

 

[Judee]

I'm meeting with a neurologist next week and will be discussing ME with him and picking his brain to get a better sense of what the understanding is within his field.

Just be aware if he doesn't believe ME he may act like he's on your side but then label your ME as FND (Functional Neurological Disorder). Sounds like a serious name for a serious disease but it's actually a new name for what used to be called Conversion Disorder, previously called Hysteria.
https://forums.phoenixrising.me/thr...third-of-outpatient-neurology-consults.87962/ (Or you can do a Google Search of the site for "FND")

This about ME is a revelation to you but don't necessarily expect open mindedness from your doctors. I hope in your case, I'm wrong but still just a warning that you might find ignorance and skepticism or maybe even possibly open hostility instead as one of our members recently did. https://forums.phoenixrising.me/blog-articles/god-please.3420/)

Which would be bad because of what you've already faced from your family. I'm sorry you've gone through all that.

 

[datadragon]

I will mention that liposomal glutathione has been very important for me. I stopped taking it a few days ago and have begun to feel poorly again. I have to go buy some more tomorrow and see if it snaps me back to health. It seems a key piece for me.

This seems to go back to our prior conversation. B12 appears to react with superoxide when glutathione is depleted causing further reduction. This may happen with ongoing inflammation or infection as zinc uptake is lowered and further becomes unavailable to utilize and is needed as a glutathione cofactor. https://forums.phoenixrising.me/threads/sterile-methylcobalamin-powder.90523/post-2441209 Perhaps the added methyl B12 frees glutathione from depletion which then not only helps with superoxide to reduce inflammation, but then becomes available again for the other functions. Taking Glutathione instead and getting similar results supports that. Glutathione appears to be involved with B12 conversion as well as Glutathione can inhibit the NLRP3 inflammasome activation so its always been one potential treatment option. https://academic.oup.com/jb/article/171/4/367/6494707?login=false

Vitamin B12 involved with methylation is inactivated as a consequence of high itaconate (itaconate shunt). "itaconyl-CoA is a cofactor-inactivating, substrate-analog inhibitor of the mitochondrial B12-dependent methylmalonyl-CoA mutase (MUT). Our work de-orphans the function of human CLYBL and reveals that a consequence of exposure to the immunomodulatory metabolite itaconate is B12 inactivation." https://pubmed.ncbi.nlm.nih.gov/29056341/ So there can be a methylation blockage under inflammation/infection. Homocysteine that rises from that not only increases ER Stress but also NLRP3 inflammasome activation as well so it seems its all part of the shift to a inflammatory state. https://forums.phoenixrising.me/thr...s-chronic-fatigue-syndrome.90582/post-2443933 In other words methylation pathways are part of the regulation of inflammation as well.

Pharma is working on development of inflammasome inhibitors that target multiple pathways — not just NLRP3 — to control inflammation in ALS and other inflammatory diseases which may also be helpful in some situations but there is alot of progress now starting to be made as we learn more about what is helping and why. https://alsnewstoday.com/news/nlrp3-inhibition-als-inflammation-study/

 

[hapl808]

I'm meeting with a neurologist next week and will be discussing ME with him and picking his brain to get a better sense of what the understanding is within his field. I don't see this having any effect on my findings; I'm just interested to hear his take on the pain and suffering I've been going through. After reading about ME last night, I also want to ask my PCP why he has not offered up a diagnosis of ME already.

Agree with the warning from @Judee - keep your expectations low. I have seen three neurologists and one neuromuscular specialist. Not one of them mentioned ME/CFS as a possibility (one mentioned the vague category of poorly understood conditions). Not one of them treats ME/CFS patients. If your neurologist isn't well known for work in ME/CFS, there is a very high chance that they will either be dismissive of ME/CFS, unaware (and dismissive), or will label it FND. There's also a few neurologists that somehow seem to think fibromyalgia is 'real' but not ME/CFS - so those will send you to a fibromyalgia specialist, which is usually just a rheum or GP who dispenses Lyrica.

Hopefully you'll get lucky, but for those of us who have been in this world and followed research and medical providers for decades, the odds are against you. I tried to speak to one neurologist just if he had any thoughts on why cognitive exertion would lead to crashes and even acid reflux and what neurotransmitters might be involved. His response was that he had no clue what condition would cause that (even though MS could do it) and had no idea how he could help me. End of appointment.

 

[ironlion37]

Thank you @Judee and @hapl808 for the heads up. I had to think about this a bit because I made the appt before I made the recent breakthrough. Should I still go to this appt?

I'm getting the hit that I should still go. If nothing else, it will be interesting to watch this person navigate the subject. At this point I'm confident I have a working treatment protocol for myself, so I'm not exposed/vulnerable in that way. I'm just going to present something like, "I've been experiencing X,Y, and Z since I was a teenager." What do you think? It will be interesting to see how deep his knowledge goes. I'm not really invested in the exchange, and it may provide some interesting piece(s) of information.

A couple years ago, as I was making my way down to the roots of all this, I went to see a gastroenterologist. I asked him if I could record the conversation so I could refer to it later. He allowed me to do so. At the time I was focused on possible damage done by Accutane to my body (as a teenager) and was looking deeply into gut health, microbiome, etc...

At the end of the appt, and after I turned off the recorder, he said to me, "we really don't know what's going on down there" - meaning the gut. And this is a guy whose full time job is working on people's guts. I share this just to make the point that I'm not overly impressed with western medicine. I don't take them too seriously.

 

[Rufous McKinney]

I'm not overly impressed with western medicine.

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.

 

[Rufous McKinney]

I went to see a gastroenterologist.

I would enjoy talking to a smart one. But I'd never take the risk to show up in their office.

But imagine if somebody could actually explain the BIZARRE state of our Gastro-intestinal system.

What IS all this drama?

 

[Algo]

Sorry @Algo, just seeing this. I just take one after the other. Started to get some stomach sensitivity after a while, presumably from the other ingredients.

How are things on your end? Any updates?

I will mention that liposomal glutathione has been very important for me. I stopped taking it a few days ago and have begun to feel poorly again. I have to go buy some more tomorrow and see if it snaps me back to health. It seems a key piece for me.

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…