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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Can we skip all this and go straight to intrathecal injection? Rich, Freddd?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Rockt, Mar 20, 2011.

  1. Freddd

    Freddd Senior Member

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    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.
     
  2. Lotus97

    Lotus97 Senior Member

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    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.
     
  3. Freddd

    Freddd Senior Member

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    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.
     

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