Pernicious Anaemia

[Neala]

Hello, this is my first post. I have had a look around to see if there is something similar so please excuse me if this has been repeated elsewhere.

I've had a diagnosis of ME/CFS for 15 years. Today I saw a Psychiatrist after he ordered several blood tests I'd never had before. One of them was for Pernicious Anaemia - apparently I have it. He said that is the reason why taking B12 injections is so effective for me. He says it has nothing to do with ME/CFS. Is this correct? What is the thinking out there about this? I mean, since it's been shown by blood tests that I do have Pernicious Anaemia, could this mean I have been misdiagnosed for ME/CFS?

I was always told by doctors that my need for B12 injections was because it was proven helpful in managing ME/CFS. Appreciate your thoughts.

Neala

 

[rellima]

B12 injections are prescribed for pernicious anemia since intrinsic factor (the substrate that binds with B12 to carry it out of the intestines and into the bloodstream) is missing and therefore it is difficult to get sufficient B12 through diet or orally. B12 is critical to the methylation cycle and frequently B12 deficiencies are tied to folate (B9) deficiencies, also critical to methylation that regulates 100s of metabolic functions in the body. Unfortunately, in the United States, most injectable B12 and and supplements are cynocobalamin and B9 is folic acid. Both forms are difficult for those with mutations in the methylation pathway to convert to usable forms. Often other forms of B12 (Hydroxocobalamin or methylcobalamin forms) or B9 ( methyfolate or folinic acid) are easier to metabolize for folks with mutations.

With regard to your question about MD/CFS, it is hypothesized that methylation pathway DNA mutations and the resultant B vitamin deficiencies may underlie CFS and many other conditions such as autism, dementia, fibromyalgia, etc. See the late Rich Van Koynenburg's work elsewhere on this site: http://phoenixrising.me/treating-cf...e-mecfs-glutathione-and-the-methylation-cycle. his papers on methylation and CFS, and his methylation protocol. Freddd (who posts extensively in these forums and has CFS) is also a proponent of methylation underlying CFS, but has a different protocol, see his protocol: http://forums.phoenixrising.me/index.php?entries/my-understanding-of-freddds-protocol.1697/ To learn more about methylation defects, see the heartfixer site for a good synopsis (based on Amy Yasko's work): http://www.heartfixer.com/AMRI-Nutrigenomics.htm

There are also numerous threads in this forum under the methylation thread: http://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/

I hope this helps.

 

[Neala]

[QUOTE="I hope this helps.[/QUOTE]

Hi Rellimafis, thank you so much for your detailed reply; very helpful. You are referring to things I had no idea about, and methylation is a word new to me - although I came across the word while searching Pernicious Anaemia in the forums.

Much appreciated

 

[Freddd]

[QUOTE="I hope this helps.

Hi Rellimafis, thank you so much for your detailed reply; very helpful. You are referring to things I had no idea about, and methylation is a word new to me - although I came across the word while searching Pernicious Anaemia in the forums.

Much appreciated [/QUOTE]

Hi Neala,

There is a list of symptoms I compiled from many sources but all had responded to MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate and a number of other nutrients. Those first 4 can get deadlocked for both methylation and ATP generation causing hundreds of symptoms including all of the CFS, FMS and ME symptoms. "Pernicious anemia" might be better understood as "intrinsic factor" deficiency for several reasons. It doesn't mean that you don't also have all the symptoms of CFS and FMS. But often, if the PA comes on rapidly it is caught before it does all the other damage to the body that requires the usually longer duration of FMS/CFS. For me what it meant was that CyCbl and HyCbl didn't work well for me and folic acid made me sick over time, since a young child with the folate problems but I didn't have PA. The low limits on serum cobalamin are ridiculous. Any way, because your serum cobalamin was lower and you had IF problems to explain it you get the "preferred" diagnosis rather than CFS/FMS which also can have macrocytic anemia. Good luck.

 

[Freddd]

HI Neela,

I just want to add one little thing about the whole IF and pernicious anemia. It is now clear that it is not the IF antibodies that cause pernicious anemia. More than half the people with pernicious anemia, based on extreme low serum levels such as one gets with IF or parietal cell antibodies and very large MCV don't have the antibodies. Also, the person is more likely to have the antibodies the longer they have the pernicious anemia. So the whole IF antibody and pernicious anemia situation over time has developed into a puzzle as it appears that the B12/folate deficiency CAUSES the antibodies and not the other way around. So now the research folks have themselves another fine mess with something declared so long and so hard and so many people refused treatment because they lacked antibodies and now they are wrong. Don't hold your breath waiting for an apology. I just wanted you to know just how bad the lack of understanding about b12 and folate is.

 

[Neala]

Hi Freddd,
Abso-lute-ly fascinating... both your messages. And appreciate the heads up re the ignorance out there.
Cheers much.