Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To register, simply click the Register button at the top right.
...The theory that HyCbl should work better for some genetics may come from massively reduced effectivness. It doesn’t cause all those nasty side effects of healing like low potassium symptoms, low folate symptoms and in reference to nerves, the increased feeling of pains that freshly stimulated nerves that hadn’t been working have. When an area comes back from not feeling, what is felt is the damage; with shooting pains, intense steady pain, painful tingling, more awareness of the shrinkage and therefore tightness of the muscles and all that. Again, I can only speak from repeated experience. Active healing can be painful. Shutting down the damaged nerves reduces the pain. What I said to myself 11 years ago is that the whole thing is counter intuitive. Many people say “what awful side effects” from the increased pains, the misery of low potassium and increased inflammation and pain from donut hole paradoxical folate deficiency/insufficiency and make sure that they never again do what could heal them over a period of time.
I don’t know of anybody who has healed from FMS/CFS/ME doing it with HyCbl. Many have some improvements and other things get worse. In every study done on HyCbl (and they are not designed to actually produce healing) there is about a 2/3 chance that a subject could have some improvement and 1/3 have no improvement at all for the studied symptoms. I have been offering information here and debugging my hypothesis and protocol for 5 or 6 years now. In all that time I have not seen anybody at all announce that they have corrected their problems to the point of returning to work, walking 5 miles daily, climbing a 2000 foot vertical hill, get back into decent aerobic condition and get their muscles restored. So whatever people interpreting the tests to mean advise on HyCbl doesn’t appear to work.. I can only chalk up all your apparent contradictions to various ways things work partially or not at all. The whole thing is complicated.
Where the people are having results the conversation changes all the time as they no longer have a problem with one symptoms set and turn their attention to others. That is why the active b12s and folate lead to need for more folate, need for potassium, need for a dozen other things, until it gets down to making adjustments in b1, b2 and b3 because those are what lead to specific predictable results. HyCbl rarely leads to solving a succession of half a dozen things or more. So far nobody can describe a healing path that starts with HyCbl through the flags of healing being turned on to secondary and tertiary insufficiency or over sufficiency symptoms. There are no predictions that can be made ( nervous system turning on, low potassium and folate shortly after starting) and predictions of what works for that after the initial things are cleared. And of course these are multi substance problems. In my opinion it works out better if one thinks in terms of partial methylation block, methyltrap and partial ATP block. HyCbl doesn’t generally correct these and can even cause them over time. MeCbl and cofactors can often correct these if given a chance. Damage can take years to heal if at all for some damages.
...With HyCbl it is very much a percentage thing. It works to a greater or lesser extent for some symptoms for often some while, and also dependent upon perhaps a dozen other factors. For every one of us a major part of the problem is finding an effective balance. HyCbl does cause side effects. And just like folates and other cobalamins, it happen by some number of levels, frequently giving paradoxical looking results. So with HyCbl it does clearly work on some levels for some duration for some people. It is also quite probable to have these contradictory results. And so much depends also upon dose of B1, B2 and B3 which can ramp up the low potassium effect and donut hole folate insufficiency with unpredictable results on healing. There are no hard and fast answers to anything. If one takes a look at a lot of research on HyCbl a large range of possible result occur. For some tiny percentage of people their responses are virtually identical, at least for the duration of an x-month study, to MeCbl or AdoCbl. The question is “why?”. What makes such a person predictable in that response. What happens over time to the other handful of “triage” levels some of which will be working some not. Rich thought that a lot of that has to do with cofactors, like B1, B2, B3 and many others. Whether MeCbl or AdoCbl work at all or not is whole dependent upon cofactors. Lack of an effective folate for one’s body can completely prevent MeCbl from working as can lack of AdoCbl or lack of Vit D.
HyCbl typically has a lot of effect on a few of the universe of MeCbl/AdoCbl symptoms, less effect on a bunch more and no effect or negative effect on others, and that varies from person to person. In studies, the symptoms studied have about 1/3 of subjects not responding with changes in the study symptoms, and 2/3 responding to some degree. However, when looking at the whole person with perhaps hundreds of symptoms, HyCbl hasn’t demonstrated any substantial ability to allow many people to say “I’m largely recovered from FMS/CFS and am going back to work and living my life”. That doesn’t mean it has no effects. It has partial and contradictory responses and perhaps complete responses on a few symptoms.
I would love to see a good study with various protocols going head to head with enough people to be meaningful. Then have say a series of physical activities impossible for people with CFS/FMS and see who is effectively recovered and able to do these activities. We see that happen all around us here but nobody is keeping track. I know of quite a few people restored to normal functioning. That doesn’t mean they don’t still have a variety of symptoms from damage and various deficiencies. I’m pretty normally capable for a guy my age, 66. I’m more in need of a fountain of youth rather than a “cure” for anything. My remaining symptoms are from physical damage and neurological damage from long term b12 deficiencies. I don’t have CFS or FMS any more. I don’t have the symptoms to diagnose them. I don’t feel like I have them as they are not quiet about affecting a person. That is all I’m trying to say.
@francesbe , Hi B.!