Can we skip all this and go straight to intrathecal injection? Rich, Freddd?

[Freddd]

My ME/CFS began after a heat stroke event. I had increasing neurological symptoms, until 9 years later, 2011, I felt as if my whole existence was reduced to a white hot neuron. There were no answers, no respite. I even arranged for an MRI, which showed only small "stress spots". Fortuitously I discovered the GAPS diet, Gut and Psychology syndrome. 3 days into the diet my nervous system calmed. The improvements to my nervous system have continued during this year on the diet. I didn't add methylfolate and methylB12 until about 8 months on the diet. The neurological healing began much sooner. Neurologist Natasha Campbell McBride devised the diet to help her autistic son. (revised SCD) Animal fat is a core healing agent for the brain. I could feel the benefits increasing over time. Less brain fog, greater cognition, an end to the tremulousness and over-reactivity.

Hi Ahmo,

My ME/CFS began after a heat stroke event

That is how my relapse last summer was trggered after 9 months of the no longer 5 star Jarrow set me up for it. Fats are essential in healing this becasue that is what myelin is made of, and loss of myelin appears to be a major casue of many of these symptoms. I'm glad to hear you are healing. I do get animal fats too, both by eating meat, and in the form of milk fat as cream, which I use in my coffee. I can't drink milk and the cream is soothing for some reason. I also take Omega3 oils and lecithin as is included in the SMP. I get a full range of fats and have had extensive neurological healing once all the other needed factors are present. So very good on chasing down the factors you needed.

 

[Lotus97]

Hi Lotus,

In the Japanese studies they just jumped right into it. Last I heard they were doing pump type deal that feeds something like 4mg/hour into the body to maintain that high diffusion gradiant to get the b12 into the spinal system without having to do intrathecal injections with their inherent dangers. In order to derive the most information possible it has to be done differently. First comes the body titration, balancing all cofactors and getting everything working. Also, alll essentials have to be in place so we know what we are seeing After the startup effects have simmered down and additional titration makes no detectable difference, ie 15mg sublingual makes no difference over 5 or 10mg, and there has been plenty of time for the cobalamins to work their way into the CSF/CNS then I might suggest the single 50mg dose. If done properly it won't be noticable in the body. That is essential, because the CNS only effect are usually much more subtle and is completely obscured by a big body reaction. What we are trying to detect here is if the person has that problem of getting and/or retaining cobalamins in the CSF/CNS. Then if there is a reaction to MeCbl, and that one is repeatable, how often indicates how fast the person looses MeCbl from the CSF/CNS. The response to AdoCbl might not be repeatable more than once each 6 months. If there is no response to either then the larger doses by injection or sublingually or combination serve no purpose.

Hi, Freddd. I realize that adverse reactions are less common among "healthy" individuals, but in your Revised active b12 micro-titration protocol you speak about hypersensitivity and starting with less than 100 mcg of b12 while in this study they are using 50,000 mcg b12. I'm sure you can understand how someone new to methylation might be confused if they weren't familiar with your protocol or Rich's or the way people within the CFS/ME react strongly to low doses of methylation supplements.

 

[Freddd]

Hi, Freddd. I realize that adverse reactions are less common among "healthy" individuals, but in your Revised active b12 micro-titration protocol you speak about hypersensitivity and starting with less than 100 mcg of b12 while in this study they are using 50,000 mcg b12. I'm sure you can understand how someone new to methylation might be confused if they weren't familiar with your protocol or Rich's or the way people within the CFS/ME react strongly to low doses of methylation supplements.

Hi Lotus,

I take all studies with large grains of salt. I have to sift through an awful lot to find the gems and nuggets. I consider the Japanese studies not at all as a developed treatment system but rather a test of effect. They are 25-50 years away from being where we are right here right now. None of them were done on healthy people. However, as they were done completely without cofactors, and especially not the other 3 of the Deadlock Quartet, I would expect the usual 20-40% with very little or no effect at all. And of course it depends upon the qualitative characterisitcs of the batch of MeCbl itself. I would have to say they got lucky to get as good results as they did. What it does show is that there is a CNS effectiveness threshold at high serum levels. What they did was very unrefined. If you just read what I have written you know more than they do about how to use higher dose b12. I have done trials all the way up to 60mg SC injection 3x per day to see if there was any dose proportionality once one gets beyond the threshold. There was none that I could find. So, one must approach it just the right way to see if a person should even bother. I have tried to explain this over and over, unfortunately it seems to get lost in the shuffle. Also, that is why I did the microtitration trials. I had to find out where the low threshold for healing sits.

My uncertainty in all this goes to those with neurological damage. For me that continued advancing even as my body was healing. 5 Years in and I had no CFS or FMS left but I was perhaps weeks away from a wheelchair. If I had known then what I do know I would have chosen to stop that damage and reverse it from near the start. There is some necessity of promtness in this sincwe as each day passes, those that can't get enough into their CNS increase the probability permanent damage. Those that don't have CNS damage have no idea how critical this is.

I wasted 5 years from my brain and cord's point of view and almost couldn't walk any more. Even now my feet hurt and burn and feel like they are encased in ski boots all the time. At least I have balance and can walk. I can hardly use my thumbs and my hand writing is unreadable becasue of the same damage. I have pain on the entire C3 dermatome. This is from CNS damage. The peripheral neuropathies healed in the first 2 years. The FMS neuromuscular pain is identical with the early Subacute combined degeneration pain. That's another one of those things that only someone who has been there and done that can know and by then it is too late for them to entirely heal.