I think many of us have experienced that. Even now, I don't know how I can be diagnosed with a 'disorder' that isn't understood, has no definitive biomarkers, is very individual, has no clear prognosis, and has little to no treatment options that work for any group.
It's awful to experience, and adds insult to injury when we realize that pretty much no one will understand unless they are experiencing the same level of the same illness. Mild people who talk about being tired after exercising vs people who worry about making it to the bathroom. Even when I was moderate, I thought severe people weren't 'pushing through' like I was. Of course, pushing through is exactly what led me to become more severe, but by the time you understand, it's too late.
I hear you.
There is some hope in that I have experienced full recovery. This latest relapse is simply due to the loss of the right form of MeB12. And because of this relapse, I now have the theory that CFS and chronic pain may be a result of a lack of B12 in the cerebrospinal fluid. B12 is also critical in neurotransmitter production. When I was well, I was working on a video series about all this. This is chapter 1, chapter 2 is linked and gets specifically into what we deal with:
(BTW, that video is all original graphics, animation, music that I wrote and performed, writing, editing, etc.. That, versus looking at getting on disability now and not even being able to concentrate. That's how big of a difference there is.)
As far as I can tell, there are two major barriers involved:
1. Lack of doctor understanding. Here is a message from my doctor this week:
I spoke with the pharmacist.
I did order the methyl cobalamin 10,000 mg for your use at home
The use of 5 g weekly is far in excess of typical Family Practice regimen and I am not comfortable doing it at that level regardless of how you use it.
If you need to use medications that are far beyond focal guidelines within Family Practice then unfortunately you will have to establish with naturopath, functional medicine provider or other licensed certified provider who has experience and the flexibility in order to use this type of therapy otherwise I will do my best to help accommodate your request so long as there is not an obvious safety issue
What he doesn't know is that I use 4mg every 48 hours! I've actually told I'm; he obviously has a lot on his plate.
2. Lack of access to high purity, high concentration methylcobalamin.
Pure MeB12 is basically a controlled substance, not available to the public except through pharmacies. And pharmacies convert it into liquid which can reduce the potency considerably (as much as 80-90%). My current theory is that this lack of potency, combined with doctors' unwillingness to prescribe high potency in the first place is what may be keeping many people from getting well, particularly those who need to achieve CSF saturation. This is what I'm working to find solution for.
I've been working on the B12 piece for 7 years, and am pretty good at solving puzzles, so there's some likelihood that I'm onto something here. A major barrier is that Oxford Biosciences will not tell me who their supplier was before the change in 2022. If I could speak to that supplier, it would be a great help in understanding what was so special about that product.
My hope is that I can find a solution that will help not only myself but many others. I think it's fair to say that CFS is often a metabolic situation and that this particular B12 solution will not work for everyone since our metabolism is so enormously complex. But I'm interested how many people it can help, and there are multiple other conditions that it may be useful in treating: depression, low libido, dementia, Alzheimer's, chronic pain, MS, aging, etc....
EDIT: On a side note, I've also found research that childhood neglect causes issues with methyl groups and neurotransmitter production (The Great Courses, DNA, Episode 8, Epigenetics). Given that I grew up with severe neglect, I find it very interesting that METHYLcobalamin helps me so much and that I've become laser focused on neurotransmitter production.
