B12 Documentary

[Xara]

Part 3:

 

[Dreambirdie]

News from the PAS, The Pernicious Anaemia Society
http://www.pernicious-anaemia-society.org/

The PAS has published a new documentary, Living With The Fog, in three parts.

Personally I found part three most interesting, different people react differently to different treatments. Some people seem to respond to frequent injections only.

Thanks Xara for posting these. I will check out Part 3 first, based on your recommendation of it.

btw... I love your avatar kitty. Adorable!

 

[Xara]

Thanks Xara for posting these. I will check out Part 3 first, based on your recommendation of it.

btw... I love your avatar kitty. Adorable!

Thanks, Dreambirdie. Kitties are cute.

About part 3. The beginning is interesting, later on it's more about politics, IIRC. In the first part of part 3 there's also a woman who says, she has been ill for over thirty years (did I hear that correctly?) and has improved by getting injections twice a day. That's hopeful! - well, at least for me (I have been ill for over twenty years).

Part 1 is also interesting, it's about testing. So I think many people will find part 1 more interesting.
Part 2 I don't remember... I remember vaguely people telling about their own experiences, what B12 deficieny did to their lives.

So I guess it depends on where you stand which part interests you most.

 

[Dreambirdie]

Thanks for elaborating on them a bit more. I don't usually enjoy watching online videos, so I'm trying to figure which will be most useful to me. I will start with 3 and see how it goes up to the politics.

 

[Xara]

Thanks for elaborating on them a bit more. I don't usually enjoy watching online videos, so I'm trying to figure which will be most useful to me. I will start with 3 and see how it goes up to the politics.

You're welcome. I hope you enjoy it. Please tell me what you think of it after having watched it.

 

[Xara]

BTW I saw at the site of PAS that an active B12 test will soon be available in the USA:
http://www.pernicious-anaemia-society.org/news/active_b12_test_to_be_made_available_in_the_us

 

[Xara]

For Dutch people: active B12 can be tested at Erasmus Medisch Centrum in Rotterdam and at Medisch Spectrum Twente, Enschede. It's called the Holo-TC test.

 

[ScottJ]

Hi Bead Dog,

I'm going to write the HMO an informative letter about their failure to provide timely services and lack of qualified MD's

Now this I perhaps know about. Are you a member of a group that has truetees as in a Union group health plan or some other groups? Sometimes it is better to complain to the plan truustees. Also, there is probably a dissatisfaction line which will get these issues very serious consideration. I was in that business for more than 20 years, working for the trustees of a virtual HMO that contracts services, as opposed to facility models, the ones who have their own hosipitals and such. These kinds of things are taken very seriously if you write it up appropriately, or sometimes, get the right form so you supply all required info and things like that.

Now where you are going to run afoul are "standards of care" set by the Joint Commission on Hospital Accreditation. They define all the "by the book" interpretations of CyCbl once a monrth, in the USA. If they did it according to the ambulatory care standards you won't likely get any traction.

My ex wife called be last week and got started on MeCbl, AdoCbl, l-methylfolate and L-carnitne fumarate. Her MCV is 120 and everything is whacked. She is very anemic and feels terrible. How it happened so fast is of concern. However, barring some major underlying problem most everything will correct if not delayed. The faster you get to these things with about 30mg a day injected of MeCbl in 3 or 4 doses for CNS repair the sooner. The longer you delay the greater the chance of permanent damage. Probably 90% of the damage that is "permanent under perodic HyCbl or CyCbl can be significantly reveresed with sufficient doses of MeCbl, AdoCbl and needed cofactors. I reveresed most of the Subacute combined degeneration so I am quite functional and continue to hold it mostly at bay. You could be get a lot better but it will take some determnination to get the treatments needed.

Hi Freddd,
I've been reading much about your protocol, but as I search around the web I find different supplements listed, and believe some of them may be older lists. I am hoping you can help me as you sound very knowledgeable and experienced in this realm.
I was feeling fine and living a happy healthy (I thought) life until about 9 months ago... I suddenly started losing weight, was dizzy all the time, had vision issues and was needing to sleep 12 plus hours a day, had lots of pins and needles feeling in my hands, feel and head and overall just a brain fog. After many doctor visits and tests I was diagnosed with Pernicious Anemia because of little to no Intrinsic Factor. I was relieved to have a diagnosis and was started on the typical Cayno B12 shots weekly then monthly and then when I didn't feel much better my doc agreed to 2 shots a month. I recently switched from Cayno B12 to Methyl B12 injection of 1000 mcg 2 times month.

Within a couple of months of my injections my weight came back and my energy level a bit too... but now 9 months out I am still having vision issues, mild eye pain and an intense brain fog... hard to think, hard to read, hard to concentrate. My pins and needles have largely subsided, but my muscles often feel tired and week, specifically my legs. I am guessing I have some Sub acute Combined Degeneration of the Cord???

Can you help me with what I might use to aide in recovery? What supplements should I try? What brand would be best?

I really appreciate any advice and hope you can give.

sincerely,

scott

 

[Lotus97]

There are many symptoms of B12 deficiency that correlate to ME/CFS. In addition to the crushing fatigue,
OI, PEM, susceptibility to infections; even brain fog can be considered to be a neurological symptom.
With any condition(s), there is also a comorbidity. I believe B12 deficiency is an important aspect of ME/CFS.

It's true that B12 and folate deficiencies can cause CFS (or CFS symptoms), but many times it's the other way around. Much of the time with CFS certain illnesses cause glutathione depletion which then leads to B12 and folate deficiencies. These underlying illnesses need to be treated for a person to fully recover. We should be careful not to extrapolate the experiences of people with certain genetic issues that cause B12 and folate deficiencies. Many people here do not need the dosages recommended by those with problems processing B12 and folate caused by certain genetic conditions.

 

[roxie60]

WOW what a great video. I have had/have so many of those flags. Hoping the MMA test result explains ongoing issues.

The YouTube video has been embedded. Is it not visible on the post?
Here's the link anyways: http://www.youtube.com/watch?feature=player_embedded&v=BvEizypoyO0

 

[ahmo]

WOW! I've only just started this vid. How scary, how amazing! Thank you for sharing. ahmo

 

[ahmo]

WOW indeed! Thanks for your post Roxie. I've been watching this thread, but hadn't seen this vid until your post came through. I've just begun it, but how scary, how illuminating that B12 deficiency can be so ruinous. ahmo

 

[roxie60]

WOW indeed! Thanks for your post Roxie. I've been watching this thread, but hadn't seen this vid until your post came through. I've just begun it, but how scary, how illuminating that B12 deficiency can be so ruinous. ahmo

Do you have B12 deficiency? Have you done a 23andME? I am curious to know others with B12 issues if you did 23andMe if you know your alelles for the following TCN2 snps. I believe the alleles I ahve listted for me are the risk alleles (as always I could be wrong but based on research so far)

TCN2 C766G Rs1801198 GG
TCN2 (6948) (PES1) Rs5749131 AA
TCN2 Rs5997704 TT
TCN2 Rs2267163 TT

 

[roxie60]

I was not allowed to have Holo-TC test. Apparently it must be expensive and requires pre-approval. Will discuss with Dr next week on whether need it (she refused approval thus far). If MMA comes back high then I think I have good support to request Holo-TC.

 

[ahmo]

Roxie, I've been following Freddd's protocol since March. It's made a world of difference. I've done 23andme, and have Firefox SNPtips, which highlights my genes when they appear on a page. But I'm not getting any info from the alleles you've posted, just telling me to reload my data, which I'll attend to later. Cheers, ahmo

 

[Valentijn]

I believe the alleles I ahve listted for me are the risk alleles (as always I could be wrong but based on research so far)

TCN2 C766G Rs1801198 GG
TCN2 (6948) (PES1) Rs5749131 AA
TCN2 Rs5997704 TT
TCN2 Rs2267163 TT

rs1801198 GG and rs2267163 TT are having the same effect, since everyone who has one always has the other as well. Hence there's no cumulative effect in having both, and really just one is relevant. The effects are relatively mild, and the "minor" allele is actually the major allele in many populations. According to Table 3 of http://ajcn.nutrition.org/content/81/6/1436.long levels of serum holotranscobalamin for people with GG are 85% of what they are for people with CC. CG might be at 94% of CC, but the sample size is too small to show significance.

I haven't seen any research indicating the other two are ever problematic in any form, and one is actually located on a different (neighboring) gene, though the gene viewer lists it on both due to them being so close together.

 

[Crux]

Do you have B12 deficiency? Have you done a 23andME? I am curious to know others with B12 issues if you did 23andMe if you know your alelles for the following TCN2 snps. I believe the alleles I ahve listted for me are the risk alleles (as always I could be wrong but based on research so far)

TCN2 C766G Rs1801198 GG
TCN2 (6948) (PES1) Rs5749131 AA
TCN2 Rs5997704 TT
TCN2 Rs2267163 TT

Thanks for posting this, Roxie.
Which genetic analysis site did you use to get your results?

I'm hetero for 3 of the TCN2 snps above, and have no mutation listed for rs 5749131. I'm hetero for most snps because it was my father who passed on the health problems. ( My mother is in good health at 82.)

A large part of my motivation to learn about genetics, ( it's a big struggle for me), is to figure out what caused the young, unexplained deaths of my brother and sister, along with my own near death.

B12 deficiency has been a part of it , along with autoimmunity.

Anyway, I appreciate your searches, it takes a great amount of energy, and leaves me cross-eyed !

 

[roxie60]

I used 23andME.

 

[Crux]

I used 23andME.

Yes, but did you download into genetic genie, promethease, livewello, or ?
Thanks.

 

[Crux]

Thought I'd add still more signs/symptoms of B12 deficiency here. Skin changes: hyperpigmentation, vitiligo, and hypopigmentation are included.

These changes can happen early, before blood and neurological abnormalities occur.

Sometimes, the hyperpigmentation can be mistaken for other conditions, such as Addison's disease.

http://journal.nzma.org.nz/journal/124-1342/4867/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691896/