Now ive got a terribly sore throat - another sign of immune system reactivation?

[Jenny]

The active b12 protocol causes a lot of startup symptoms, in 15 minutes after starting the very first 5 star mb12/adb12 sublingual while it is still in their mouth.

Freddd - you seem to be implying here that everyone on the active b12 protocol has a lot of startup symptoms within 15 mins. This is clearly not so - it is not my experience nor that of some others.

 

[Freddd]

Freddd - you seem to be implying here that everyone on the active b12 protocol has a lot of startup symptoms within 15 mins. This is clearly not so - it is not my experience nor that of some others.

Hi Jenny,

No not everybody has that but a some people did. I tested about 1000 people while developing the list of symptoms that were relevent, since then adding many to it, and about 85% of the people with a cross-section of symptoms, ie fatigue AND neuropathy AND gastric, the specific symptoms were not as important as being in at least 3 different systems, had a noticable startup of some sort within 2 hours. The earliest frequent startup time was 15 minutes and some, myself included, were as little as 5 minutes. The people who started with any noticable startup in the 5 to 15 minute range tended to be the sickest and most symptoms and most extreme symptoms. However, only certain symptoms can respond that fast and there are other groups of symptoms that take days to show startup. There is a full timebased distribution curve here. One of the things I was trying to get at was that perceiving quick startup was not placebo effect which. Time to intial noticable startup might be a distinguishing factor for which of the 4 b12 deficiency syndromes was involved. I would suggest that it is limited to the body syndromes for very rapid startup. The CNS/CSF low cobalmin documented in CFS/FMS would tend to take longer or a lot longer it would appear.

This goes back to the 1950s and doctors being threatened with sanctions and even prosecution for claiming that there were people who had noticable effects from b12 injections before they even left the office. The AMA was intent on scaring doctors into not reporting or noting startup responses saying that it COULD NOT BE ANYTHING BUT PLACEBO. They bullied doctors into not giving people b12 injections just because people felt better with them and cracked down on insurers to prevent payment without suitable tests. Then required certain very expensive tests to "justify" giving b12, symptoms not being enough. Then discouraged testing because it is not "cost effective". The AMA declared war on the use of b12 right from the start. The problem was that most people could not replicate the same startup effects over and over so it had to be placebo. When I started on all this I was very interested in what caused these "placebo" effects and how to make them repeatable and predictable and prolonged thereby proving they were not placebo. People reporting that they felt better and healed all sorts of things just was not an acceptable reason for giving b12 and they stamped it out.

Doctors who had been enthusiastic adopters of b12 became scared to use it and much of that fear remains though almost nobody currently in practice experienced that. I was setting up to answer the objections.

 

[snowathlete]

The CNS/CSF low cobalmin documented in CFS/FMS would tend to take longer or a lot longer it would appear.

What's your current theory / best guess as to why it takes so much longer in CFS/FMS. Is it because its all getting used up by the other systems initially as they have been starved of it so long?

 

[Freddd]

What's your current theory / best guess as to why it takes so much longer in CFS/FMS. Is it because its all getting used up by the other systems initially as they have been starved of it so long?

Hi Snowathlete,

Lots of different studies, taken together indicate that people with CFS, FMS, ALS, MS, SupraNuclearPalsy, Alzheimer's, Autism, Parkinson's and probably some others all have low cerebral spinal fluid cobalamin levels, and some specifically also have been tested for MMA and HCY in the CSF. Various diseases have differening indications of which cobalamin is drastically low. I would hypothecize that there might be a genetic reason that it is either some kind of breakdown in transport into the CSF or it drains out too fast as some other research has suggested or both.

 

[Rockt]

Hi Snowathlete,

Lots of different studies, taken together indicate that people with CFS, FMS, ALS, MS, SupraNuclearPalsy, Alzheimer's, Autism, Parkinson's and probably some others all have low cerebral spinal fluid cobalamin levels, and some specifically also have been tested for MMA and HCY in the CSF. Various diseases have differening indications of which cobalamin is drastically low. I would hypothecize that there might be a genetic reason that it is either some kind of breakdown in transport into the CSF or it drains out too fast as some other research has suggested or both.

So wouldn't this make trying an intrathecal injection of methylcobalamine worthwhile, as the Japanese did with good success for diabetic neuropathy?

I recall some months ago Freddd you mentioning this to your doc. Did it ever go any furhter?

 

[snowathlete]

I used to work in an Elderly Mentally Infirm unit looking after people with Alzheimers, and other dementia conditions, and something i noticed over the years, was that 99% of the people there had blue eyes. I reckon i saw over a hundred patients while i was there. So, my guess is that dementias are genetic based on this rather unscientific observation.

I have blue eyes, but i doubt everyone with ME does as well.

While we are on the topic of genetics, i recently purchased a test with 23andme, who are a big genetics company that take a sample of your dna and give you lots of data on it. The idea is that you also fill in lots of surveys about physical traits, illnesses you have etc. The hope is that in the future they will have enough data to identify paterns in people with shared illnesses.

 

[Freddd]

So wouldn't this make trying an intrathecal injection of methylcobalamine worthwhile, as the Japanese did with good success for diabetic neuropathy?

I recall some months ago Freddd you mentioning this to your doc. Did it ever go any furhter?

Hi Rockt,

It's on hold until I come up with suitable 5 star mb12 crystals. It might be good. I did a series of injections up to 60mg 3x per day. It did penetrate the CNS/CSF better than 3x 10mg but because it was only 3 star mb12, it wan't more effective.