Active B12 Protocol Basics

[juzcat17]

HI
I am a oldie from the old CFS_Yasko group and a newbie on this group. Had CFS for 21 years and tried everything from Enlander to Salvato, Yasko to HGH, Filling s removed, mercury detox, Th1 Th2, Stanfrod anti virals, Antibiotics etc etc
I have periods of functioning but have have a bad relapse which prompts me to re-look at Active B12
Have been trying to make head or tail of what to try on Fredds protocol
Does anyone know where to start
I have my test results as follows:

I believe the CBS A360A not mutated is a good thing but i have many other mutations
I was luck enough to have Rich analyse this in 2006 but a lot seems to have changed in the theory since then and the addition of MeB12 and AbB12 is a big change since then

Fredd or anyone..be very grateful for any thoughts on how should i start on the Active B12

Am based in Singapore
Many thanks

 

[ahmo]

@juzcat17 You'll find a consolidated guide to Freddd's Protocol in my signature. Looks like you'll have to be careful w/ sulfur due to SUOX...all I can say for now. good luck, you. Fred hasn't been posting for a couple months. cheers.

 

[garyfritz]

I am NO expert on this. My symptoms have only appeared in the last few years, so you are fighting a harder battle than I am. As ahmo said, your SUOX may indicate care with sulfur.

It seems to me your SNPs are pretty similar to mine. You have different variants of CBS, MTHFR, etc, and I don't have SUOX or VDR Fok. I have TCN2 which might be causing a lot of my B12 problems. But since our SNPs are otherwise so similar, you may react similarly to me. I tried Freddd's protocol -- I am still on the mB12, adB12, methyl folate, and LCF -- but I never really experienced a big "methylation startup" phase.

For me, by far the biggest impact (that I've found so far) comes from methyl B12, and I seem to need quite a bit of it. Until recently I was taking 20-30mg/day of sublingual mB12 (Country Life 5000mcg). That helped a lot but it wasn't quite doing the job. Last month I started using a transdermal oil product, and that has worked better for me than anything else I've tried. Several other people have also reported good results with the oil. I'm using roughly 3x the "normal" amount of oil (3 doses per day) but that does a very good job of keeping my symptoms under control. Any less and I crash.

I started a thread to discuss the oil product here: http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/

Hope that helps!

 

[juzcat17]

wow.gonna check out the transdermal product. Sounds very interesting. thanks for the advice

 

[Jade east]

Hello again,

I just wanted to update that my homocysteine levels came back normal (6.4 mumol/L) which seem to point out that folate deficiency (or even paradoxical folate deficiency) is unlikely. Right?

Additionally, although unreliable as a true measuring tool, FYI my B12 serum levels are normal-high (750).

So it seems I'm back to square one regarding this "Anemia" phenomena I'm experiencing. Seeing a hematologist on Wednesday...

Jay

Zinc can cause interference with iron stores.

 

[stridor]

@garyfritz
I am TCN2++ as well. I have recently been able to cut down to 1000 mcg x2 daily by injection. I tried to go lower but it didn't work out. I wonder how many of us there are here?

 

[ahmo]

@stridor I still don't know how to read these things. I've looked up TCN2 on my Promethease report, here's what I get:
rs5749131(G;G), rs1801198(C;G), rs2283873(G;G) Is any of that TCN2++?

 

[Gondwanaland]

@ahmo there is a sample file from the Sterling's app here that you can use to compare:
http://www.mthfrsupport.com/wp-content/uploads/2014/01/V4-chip.pdf

 

[stridor]

@ahmo
I'm not an expert either. It's rs1801198 that is coined as "The Frailty Gene" and you are hetero.

 

[Valentijn]

@ahmo
I'm not an expert either. It's rs1801198 that is coined as "The Frailty Gene" and you are hetero.

rs1801198 is a SNP, not a gene. And since more than 50% of every population has the slightly rarer version in heterozygous or homozygous form, I doubt it has much impact upon frailty syndrome.

 

[stridor]

@Valentijn
Told you I wasn't an expert, I thought that rs1801198 was the gene and the guanine for cytosine was the SNP.
I have heard about the whole 50% thing but research says that there is something going on. Perhaps, combined with other genetic epigenetic factors.

 

[physicsstudent13]

where can I buy cheap b and glutathione injections please? I have been dying from nausea, vomitting and exhaustion and brain fog and fear I will be unable to work or eat

I think I have pernicious anemia after all the bleeding from tracheotomy since a yellowish bag of IV vitamins 3 times at the doctor helped a lot

 

[bsw]

I just got the 'essential' supplements listed here in the original psot and I noticed on opening that they were both methyl b12, rather then one being adeno b12.

I'm a little confused, as Freddd stressed the importance of having both types of b12 for proper healing.

I take it I should just order some andeo b12 some another source?

 

[Gondwanaland]

I take it I should just order some andeo b12 some another source?

I think this document has the latest update
http://forums.phoenixrising.me/index.php?entries/my-understanding-of-freddds-protocol.1697/

 

[bsw]

I take it that the Dibencozide Coenzyme means its the adeno form of b12?

This is really confusing ...

 

[ahmo]

take it that the Dibencozide Coenzyme means its the adeno form of b12?

yes.

The first link in my signature is a short version of Freddd's Protocol. the 2nd is a compilation of info from Fred.

 

[Irwin]

Last week I had intense diarrhea 3 days in a row after using 2mg b12 + 400mcg mfolate and yesterday I experienced leg cramps (this is rare). Probably all this is due lack of potassium.

I just have a few questions: 1) Usually, I love onions and garlic. But, after these diarrheas, I feel sensitive to onion and eggs. I feel something like nausea when I smell. Is possible I have sulfur problems? This nausea just appeared after my 'detox reactions' (that I don't think it's really detox)

2) If I feel 'donut hole' mfolate insufficiency symptoms, I need to increase my methyl folate dose AND b12? Or just mfolate is enough?

3) I use Quatrefolic, is it ok?

4) If I use large doses of mfolate (like 4mg) and need suddenly stop the usage, what can happen? I'm afraid that I'll feel super awful due to a 'super mfolate insufficiency'

(Maybe these questions were answered before in another topic, I'm having difficult to use the search bar cause it load but find nothing, maybe it's a internet issue)

 

[Biarritz13]

An interesting study for those who are still doubting about B12 and Folic Acid :

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124648

 

[garyfritz]

So that study tends to conflate folic acid and "folate," but it sounds like they did actually use folic acid. Would have been interesting if they'd also tested methyl folate. But then they would have had to also check the MTHFR&etc status of their subjects, and that would have been a minor miracle...

 

[PeterPositive]

The study is interesting but it doesn't have a control group or blinding so I am not sure how this can be very convincing.

I mean, I don't need to be convinced that high dose B vitamins (B12 in particular, which took me out of bed) provide benefits for pwME but I don't think it provides sufficient evidence of the scientific kind.