Ten Years of healing: No more congestive heart failure, FMS, CFS and minus 100 pounds

[ahmo]

I take the Swanson Activated B-Complex. I like it because the doses of each vitamin are not in the stratosphere and I can take a second later in the day if I need it. Here's a link: https://www.swansonvitamins.com/swanson-ultra-activated-b-complex-high-bioavailability-60-veg-caps

Thanks Wordweaver. Once I had the Thorne product in my hands, I realized the ratios and amounts weren't so great as I'd thought, and even splitting the cap into 3 wasn't a great option. Besides, the stuff doesn't really pour out of the cap, unlike the single Bs I'd been doing this with easily. iherb doesn't list Freddd's choice. I did find a Dr's Best Fully Active B complex, but still the dosage is too high. I've now ordered the Swanson, which look to be the best choice I've seen, even tho the shipping to Aus amounts to $20 for 2 60-cap bottles. Looking forward to getting started with these low dose caps. cheers, ahmo

 

[Freddd]

Hi Ahmo,

I got a small capsule maker, 24 x 00. I'm going to try to optimize my b1, b2, and b3, and eventually other parts of the spectrum too like biotin, to see if I can kick up the CNS healing rate some more. So I'm going to do my mix my own b-complex, or at least limited b-complex add-on. I haven't found a convenient to buy b-complex. If I were trying to get a company to handle a specific product they don't have I would request it, and have 1000 of my friends request it too. Sounds good to me.

 

[ahmo]

Freddd, this is brilliant, like all your recommendations. What about the Swanson product? You wouldn't have the same postage costs as I do. I have a capsule maker, and full bottles of B1,3,5. I very much look forward to your results, how you're going to calculate the dosages. I've found I still need extra biotin and choline when using the Thorne multi, as well as inositol, and the folate, B12, B6 seem to be nearly non-existent in my 1/3 capsule dose. Lowering my B's has created more consecutive days of feeling well than I've experienced in over 10 years. I've also been able to lower my Yasko CBS drops. cheers, ahmo

 

[Freddd]

Freddd, this is brilliant, like all your recommendations. What about the Swanson product? You wouldn't have the same postage costs as I do. I have a capsule maker, and full bottles of B1,3,5. I very much look forward to your results, how you're going to calculate the dosages. I've found I still need extra biotin and choline when using the Thorne multi, as well as inositol, and the folate, B12, B6 seem to be nearly non-existent in my 1/3 capsule dose. Lowering my B's has created more consecutive days of feeling well than I've experienced in over 10 years. I've also been able to lower my Yasko CBS drops. cheers, ahmo

Hi Ahmo,

One of the conclusions I have come to over the past period is that there really are no reliable guides to what vitamin dosages are really needed to work best with both active b12s and l-methylfolate. As we are finding out the zone of excellent performance may not be very wide. There are very real top levels for some of the vitamins with them being dose proportional in effect past optimum once B12 isn't the most limiting factor for almost every body. Balancing, "customizing" as I called it when I first came here, is critical. And it is not simple. The answer appears to be somewhere between what I'm taking now and B-Right without the folic acid, as to amounts and types. It was a very effective mix for a lot of people. It seemed to do a lot of healing for me with a few exceptions in folate deficiency with reasonable amounts of potassium, as I am taking now. Everything I increased over the B-right amounts pushed things too far and less healing. So I have my first aiming point including a balance. Maybe I start with .25BR or .5BR quantities. I really rather like being able to get along on 4-7mg of Metafolin a day (experimenting to find the maximum healing effect). However, if healing went up with more, I would like to know. I NEED more neurological healing with nothing else going wrong. The wrong doses can take a long time to really show up. I would rather start with a known balance and vary the dose of whole balanced set or reduce troublesome elements..

 

[ahmo]

Freddd,

I would rather start with a known balance and vary the dose of whole balanced set or reduce troublesome elements..

Yes. I've just looked at the Swanson's I've ordered compared to B Right and they're quite close. B-Right has 50 mg B3,5, Swanson has 25; B-Right has both B6 and P5P, Swanson's just P5P. My understanding is that B6 in that form is actually detrimental to those of us who need the P5P. The Nature Made looks to be considerably lower dosages than the other except for niacin, which is same.

Do you think this is something like the final critical element in healing the system? That when we account for everything else, we're hanging up on B vitamins? What do you make of the link with potassium, and via potassium, presumably other minerals? I ask because I now classify myself in the 80% healed category. I'm just working through the implications of some form of Mast Cell syndrome, which might still underlie my histamine responses. Or it might still be leaky gut, for which I'm now going to employ Yasko's RNA formula. Given the amount of my improvement just since March, when I was fully on this protocol, I'm very interested in what other tweaking might remain. cheers, ahmo

 

[Freddd]

Hi Ahmo,

About 18 months in I did an elimination diet and nailed milk and cheese. Before that amount of healing everything irritated my gut and I couldn't tell the difference. I think the B1, B2, B3 and who knows which other ones, but those all affect the amount of l-methylfolate and potassium needed, but don't know in what relationship. It also has pantithine, biotin, inositol and so on if I remember correctly. Right now I am adding those back in one at a time to see if any of them make any difference and in what combinations, in all this. I've never gotten the balance as good as when I was on the B-right except that the folic acid was a problem. Without removing that its hard to tell about the other items.

It sounds like you have been moving much faster than I ever did but then it took 5 years to make it through finding the deadlock quartet and potassium.

What is in her RNA formula?

 

[ahmo]

Freddd, funny, I just came here to edit my post to indicate that I've been nearly 2 years on GAPS diet, extremely limited. I still can't do even pumpkin/squash, which is the most basic in advancing to starches. And avoiding sulfur (high thiol) and histamine producing means almost everything green is out. Natasha Campbell-McBride says in her FAQ's that she really feels for people w/ ME/CFS, that it is the hardest ailment to heal. So I've just relaxed into my diet and treating it, as they say, as a marathon, not a sprint. I'm continuing to treat for bacteria, but I've had very good results w/ 3 other Yasko RNAs so I'm biting the bullet getting this one as well. They won't say what's in them, just that they help/initiate RNA repair. They're apparently homeopathic. There's some sort of non-descript video, might be on youtube. Doesn't say anything. I just saw so many + results on her forums that I decided to go for it, and they've been effective. They're very expensive, so I'm happy that lowering the B's has meant I've also decreased the CBS (sulfur) drops. Frankly, my limited diet has the benefit of not being the suspect in any reaction I might have, since it's so habitual. So Jarrow is the one we should be lobbying for a changed formula....cheers, ahmo

 

[zzz0r]

@Freddd

Thanks for your recommendations. Your explanation was really good. As until now I have just tried only methylb12 which have stopped my constant fatigue that I had every day even though I am still not sleeping well. It also boosted my mood dramatically since day 2. The symptoms that I get is increased acme, diggestion problems and some mild angular chelitis as well as worsening of sleep (which was an initial symptom). However the worsening of sleep come at about 4 weeks of receiving 1mcg of mb12 each day. However I can not yet deal with my unsteady gait problem (unsteady walking - instability) and I can not yet work out at the gym as the symptoms get worse. Thats why I ordered the ab12 and folate to see what is going to happen if I put those in. Any suggestions on these symptoms?

After doing some reading I understand that there is, a belief by people that supplementation with a vitamin can expose deffeciency in other vitamins or minerals. Do you agree with that?. Is that generaly acceptable my medical sience or is it something that we are figuring out now from everything that we are going through? All people here that repsoned to the active protocol have they checked their system for celiac desease (gluten deffeciency) because if we luck all these vitamins the main reason might be that we can not absorve them. There is a generally approved test for mutations that can define if a person is positive to gluten deffeciency and then o biopsy must follow to prove it 100%. Have anyone that respond to active protocol done this test?

 

[Freddd]

Hi zz0r,

What makes the ataxia worse; exercise, tired, eyes open, eyes closed, in the dark, in the light.?

After doing some reading I understand that there is, a belief by people that supplementation with a vitamin can expose deffeciency in other vitamins or minerals. Do you agree with that?. Is that generaly acceptable my medical sience or is it something that we are figuring out now from everything that we are going through

I remember reading cautions about induced vitamin deficiencies caused by taking a few vitamins even way back in the 60s. It wasn't unknown. In fact it was mentioned so much that it almost seemed as if it was an attempt to scare people away from vitamins. The induced low potassium being caused by b12 was mentioned but also that it was rare (with CyCbl). All 4 of the deadlock quartet can hold up utilization of other nutrients causing a sudden pent-up demand when the damn breaks. It also takes all four items in place and functioning normally for normal sleep. I think medical science is aware of the possibility but not familiar with actual examples that are predictable. Even if it was common medical knowledge in the 50s, it is forgotten now except for us experiencing it. Just like docs have generally forgotten that folic acid is only partly effective for some people and that CyCbl is so poorly effective for almost everybody.

 

[zzz0r]

@Freddd
Thanks Freddd point taken.
Regarding unsteady gait ( feeling being on a boat when I walk) it gets worse when i exercise ,also when I do not sleep well and I am tired. Before I find out this forum and learn about the active form of b12 (methylb12) I found accidentaly that magnesium was really giving me a better sleep before i start excerising againing and ruine again my sleep. However I do not know if I should try it at the present moment before trying the complete deadlock quartet..

 

[Freddd]

Hi zzz0r,

When you close your eyes do you "fall right over" or feel like you are going to?

 

[zzz0r]

@Freddd

It feels like "I am going to" . The sensation is not that strong to actually make me fall down. I can even go out running but it is like I dont walk steadily.

 

[dannybex]

So for those seeking to NOT overdrive these cycles and NOT force undesirable balances, stop all the extras before starting with the Deadlock Quartet. NOW things make a lot more sense. The active b12s and folate and carnitine don't DRIVE these cycles. Biotin, B1, B2 , B3 and maybe pantithine drive these cycles and determine how the deadlock quartet are used.

...I will be adding "detox" definitions as triggered by excess B1, B2 and B3 in preliminary form soon.

Hi Freddd,

My doc said that b2 and especially b3 were 'methyl sponges', they soak up methyl groups. I had heard that about b3, but not about b2 before. And I read a study somewhere that suggested (at least in the experiments they were doing) that b1 shares some of the same transporters as folate -- so that MIGHT explain a negative reaction.???

 

[Freddd]

Freddd, Even though I'm not cured, it's been 4 years since I've skied and I wouldn't mind resting up and joining you for a run or two.

Hi Abporter,

Two months before I was t-boned I met Ernie Blake at the Cleveland Ski show and was offered the area photographer job. The director of the ski patrol at Taos of the time was an ex Sugarloafer like myself. The car wreck ended my professional skiing and photography. The following year we moved to SLC and Snowbird and Alta became my home areas.

I'm trying to get ready for some warm weather skiing in March and April. I have a pair of boots from my son now that are about the right size but need to be highly customized to fit my feet properly. If I were taking it up seriously again I would go get a pair of Daleboots.

 

[Freddd]

Hi Freddd,

My doc said that b2 and especially b3 were 'methyl sponges', they soak up methyl groups. I had heard that about b3, but not about b2 before. And I read a study somewhere that suggested (at least in the experiments they were doing) that b1 shares some of the same transporters as folate -- so that MIGHT explain a negative reaction.???

I don't have a reason other than "effects" for saying these things about b1, b2 and b3. B1 is known to affect folate usage. A complete lack of b1 can cause folate deficiency symptoms by not activating the folate. This overdriving need for potassium and mfolate is caused by something that also stops healing to a large extent. Of course going into partial methylation block does stop healing on whatever levels the block occurs. I don't know if "soaking up methyl groups" has any validity. How could 25mg of a vitamin soak up the methyl groups from 1000mg of TMG or similar amounts of choline or SAM-e?

 

[dannybex]

I don't know Fred, but I just read again yesterday that niacin is a 'methyl acceptor'.

https://www.google.com/#q=niacin+'methyl+acceptor'

 

[abporter]

Hi Abporter,

Two months before I was t-boned I met Ernie Blake at the Cleveland Ski show and was offered the area photographer job. The director of the ski patrol at Taos of the time was an ex Sugarloafer like myself. The car wreck ended my professional skiing and photography. The following year we moved to SLC and Snowbird and Alta became my home areas.

I'm trying to get ready for some warm weather skiing in March and April. I have a pair of boots from my son now that are about the right size but need to be highly customized to fit my feet properly. If I were taking it up seriously again I would go get a pair of Daleboots.

Freddd,
I was feeling enough like my old self to go buy some ski clothes on clearance this past week. (I just started GcMAF two weeks ago here in Reno. My energy with it and LDN have been enough to allow me to slowly start exercising again.) I don't have equipment now. I used to have 200cm Rossignol FP skis and Orange Salomon Boots bought for me 30 years ago in Park City that I skied on for years. I'm not up on the latest equipment and the shorter, fat skis or the latest boots. Just fyi, photography and video have also been passions of mine. I've been doing more of that the past few years.

 

[Freddd]

I don't know Fred, but I just read again yesterday that niacin is a 'methyl acceptor'.

https://www.google.com/#q=niacin 'methyl acceptor'

Hi Dan,

There are lots and lots of once carbon transactions in the body. So niacin is an acceptor. Does it then pass it on in other transactions so that it happens over and over? Not enough is not good. It also appears that too much is not good. Some place in the middle is the goldilocks point. Part of the problem with explanations is that many of them are built on foundations derived from folic acid and CyCbl, which appears to be different enough from how things happen with active folates and active b12s that it seems like more questions than answers appear. Too much Niacin does appear to put a lid on methylation reactions. If it does that by being a "methyl acceptor" that's fine. But what does it really mean and why can a relatively small increment have such a large potential non-proportional response. I don't have any answers on this, just a few predictable things that happen. It seems to me that a lot more beyond a simple methyl acceptor response is going on.

And maybe the response to this is sort of a pivot point (pure speculation). Those that have gotten successful methylation and healing going have that stopped with a small increment of niacin. Those who have an unpleasant experience with methylation also have that stopped, but because the experience is different, the results are interpreted differently. This seems to be very similar to the interpretation of results of glutathione having a strong bimodal interpretation.

 

[serg1942]

Hi Freddd,

Congrats for your recovery. It's been several years since I don't read the forum, and some things you've written have drawn my attention.

I am half way in my recovery path. I was 100% bedridden, and now I am at my 50-60%, and in my third year of medical school. So, making progress, but still sick and of course looking for answers.

I would very much appreciate if you could take the time to answer the following questions. I am interested in your view, after several years, and have not the time/energy to look through the whole forum...:

1- What do you think is the cause of CFS?
2- What's the role of the methylation cycle in CFS?

3- What would be, in general, your proposed treatment for CFS, to unblock the methylation cycle or other blockages you may have found involved in CFS pathogenesis. And why?

4- Why do you think GSH may be dangerous?

5- Why do you think B1,2,3 and/or 5 could solve the problem with the folates?

6- In short, in what do you think Rich V. Konyneburg's theory failed, and why? and how your proposed treatment corrects these mistakes?


Thank you in advance for you time,

Best,
Sergio

 

[adreno]

@Freddd ,

Regarding glutathione precurser, do you take selenium? Which form? The popular form Se-Methyl L-Selenocysteine is a glutathione precursor. I guess anything with cysteine would be.