Poll: Freddd's B-12 Treatment Plan

[caledonia]

If you have tried Freddd’s B12 Treatment Plan please vote in the poll.

 

[cigana]

Hi,

Could someone provide a link here to this treatment plan?

Thanks,

Cig

Edit: The best I could find is from this forum:

http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131

I am assuming this is the same "Freddd's B12 protocol" referred to here...

 

[rydra_wong]

It is the same protocol but that was only a snapshot in time. No one is taking B Right anymore because it contains folic acid, for instance. I did not follow the pack on the choice of a replacement so I cannot say what they settled on. I believe a number of the supplements have changed, the one for aB12 also. Maybe Idie or Mogy would know.

 

[cyndyd]

I see that there are a few here that report crash with protocol. I can say from experience that you have to try to get through those worsening of symptoms. It is part of the healing process. It is your body waking up. The nerve's are coming alive again. Hang in there. Some folks need to start slower than other's.

 

[dannybex]

Hi Cyndy,

I am wondering how specifically, in your case, did your symptoms worsen -- or could you describe specifically happened?

When several of us would mention increased neuropathy, he would describe that (I think) as nerves 'waking up' or coming back to life. But he came from kind of a coma-like state, where as many of us are coming from a 'wired-but-tired' situation, common with ME/CFS. I felt like I was losing nerve function or like my myelin was disintegrating (as the neuropathy got worse), rather than a rebuilding type thing.

???

 

[L'engle]

I would say moderate improvement so far but I still have amounts to increase and co-factors to work on.

 

[Gestalt]

This thread is unclear.
What and where exactly is Freddd's B-12 treatment plan?
And how does it relate to Freddd's Protocol? Is it the same is it different?

There appear to be a bunch of plan's/protocols floating around on these forums, some modified and some not. Is there a listing somewhere of all the different ones and what they are? IT seems some change with time, where are the most recent ones?

 

[Tara]

I'm glad to see this poll here, though disappointed to see no takers on filling it out... That is my big question regarding Fredd's protocol and it's success. I am eagerly anticipating getting my labwork together and getting started on the protocol myself, but I am surprised and confused to feel the consensus throughout the site as that of underlying hopelessness for a lasting cure. If Fredd's protocol healed HIM, and Dr. Rich and others have been successful with it as well, why are we not hearing more hope and healthy anticipation about it throughout this site?

 

[Gestalt]

If Fredd's protocol healed HIM, and Dr. Rich and others have been successful with it as well, why are we not hearing more hope and healthy anticipation about it throughout this site?

The program will help if you have a functional B12 deficiency and a compromised folate cycle. However this address's only a small part of the methylation cycle. Take a look to see what else is involved and what else may need support.

Now we know about 40% of the general population has a compromised MTHFR enzyme, therefore methylfolate helps quite a few people. But that also means for about 60% of people, methyfolate may not do much. Similarly this is true for many other things.

Based on statistical analysis we know that people with CFS have a higher probability than normal of having issues with ACE, COMT, MTHFR, MTRR, AHCY and BHMT. (source)

B12 adresses MTRR
Methyfolate addresses MTHFR

Thus that is a pretty good place to start and should help a decent amount of people. Further fine-tuning may or may not be necessary depending on causes and genetics.

Every person is a unique snowflake, and what works for one person may not work for another. Every person has a unique genetic combination, plus a unique mulitfactorial set of causes which created the CFS in the first place and thus many people require a diverse individualized recovery program.

 

[Tara]

Thanks, Gestalt. Your explanation helps, and I'll have to start studying this diagram more for further understanding. I just found out I am Hetero A1298C, so it's looking like the primary source(s) of my CFS/ME are probably coming from other mutations. I am in the process of getting the methylation pathways panel that Dr. Rich recommends, and am maybe considering getting some CBS test strips as well.

 

[Tara]

Hey Gestalt, did you find the most recent link to Fredd's protocol? I agree with your sentiment of it being near impossible navigating around on here to find the staple info., especially in trying to keep current as things are revised and modified along the way... I'm thinking of ordering the supplements to get started with the protocol, even before getting my methylation panel results back, unless some of the supplements are dependent upon your individual results?

 

[cureminded]

It is the same protocol but that was only a snapshot in time. No one is taking B Right anymore because it contains folic acid, for instance. I did not follow the pack on the choice of a replacement so I cannot say what they settled on. I believe a number of the supplements have changed, the one for aB12 also. Maybe Idie or Mogy would know.

Hi Rydra,

I am actually taking the B right since that was what Fred recommended. What's your alternative?

Thanks

 

[arx]

Hi Cyndy,

I am wondering how specifically, in your case, did your symptoms worsen -- or could you describe specifically happened?

When several of us would mention increased neuropathy, he would describe that (I think) as nerves 'waking up' or coming back to life. But he came from kind of a coma-like state, where as many of us are coming from a 'wired-but-tired' situation, common with ME/CFS. I felt like I was losing nerve function or like my myelin was disintegrating (as the neuropathy got worse), rather than a rebuilding type thing.

???

Hi,

One of my major symptoms were electric sensations,twitching and buzzing in my nerves throughout body, and most intense in spine and brain regions.Initially when I started the protocol with mb12, the sensations intensified. Now one can perceive that as getting worse or as Freddd mentions, nerves 'waking up'. I agree that he came from a coma like state, and many of us from a wired but tired situation. But I perceive that wired but tired state also characteristic of neurological malfunctioning. My symptoms did get worse, lasted for about two months and then the intensity of that startup was significantly reduced. Then I added adb12 to the protocol and the symptoms worsened even more, indicating adb12 deficiency. Then when I got a bit comfortable with the adb12 titration, I added Acetyl L Carnitine to the protocol(ALCAR). ALCAR totally blew me out, and this was just a few days back. ALCAR has made my symptoms increase tenfold as compared to the mb12 startup response.I almost felt psychotic the first time I took ALCAR. I had to and am still titrating it very carefully. Freddd mentions that a hyper response indicates extreme deficiency. Even though I feel terrible and this is the reason I think many don't continue with this protocol. I suspect myself to fall into the adb12/carnitine hypersensitive category,with cord,brain issues with little body involvement. I also have the anxiety characteristic as a base mental condition and exhibit a number of psychiatric symptoms.

This thing you mention, losing nerve function or myelin disintegration. I understand what you're saying. But can't THIS be the rebuilding process?

I am trying to see all these horrible effects in a positive light. My own experience and understanding of this is as follows:

- initially,mb12 produced startup at affected neurological regions
- b-complex,potassium and folate added to protocol
- startup intense for the first two months
- added other vitamins, some co-factors
- adb12, and l-carnitine produced more intense startup at affected neurological regions.
- reassessed folate and potassium intake, had to increase both.

with adb12 and carnitine,experienced startup at more regions, which were thought to be not affected. I perceive this as increased sensitivity. I have increased pain and sensations at many more places in my body now.Maybe they were already there and I have gained the ability to sense them. Increased pain sensitivity has been mentioned by Freddd, I think. Or maybe the supplements start working at affected neurological regions, and the initial process is very uncomforable. My hands go numb now,and they have never gone numb before. My mental state is also much more agitated. This signifies the initial response, which is a hyper response. ATP startup,methylation, whatever processes are there, they must have finally started working after months/years of being dead. I have the same doubt with the worsening,but if you read carefully what Freddd has said in his last threads (see most recent threads and contents on his profile), you will gather that this is actually a positive sign. The HYPERSENSITIVITY IDENTIFIED thread is very useful if you read word by word carefully.
Link: http://forums.phoenixrising.me/index.php?threads/hypersensitivity-identified.16104/

I would like to know what does Freddd mean by 'neurological brightening'. Is it worsening of symptoms from an increased nervous system sensitivity viewpoint, or is it healing of thse symptoms?

Also,I know the feeling/sensations of myelin disintegration. Now what I feel is even worse than those sensations. If this is a healing/startup response, it is surely worse and much more painful. No pain,no gain theory?
Maybe this is the essence of Freddd's protocol? One has to pass through this darkest night to reach the dawn?
Worsening indicates extreme deficiency and maybe they get better over time,if one has the ability to continue with the protocol? The worsening takes away most of the motivation,right?
I need the courage to endure these crashes.
I'm trying my best to stick to the protocol by titrating the dosages.
Freddd, you are needed here on these forums.

 

[Victronix]

My understanding is that people who are not deficient in B-12 will not experience these symptoms -- my husband and a friend of mine both tried taking huge dosages, compared to what I was taking, with basically no effect. Fredd described the same thing with his gf, even with injections.

But for me, early on, at far lower dosages, I was almost bedridden with the symptoms, including extreme anxiety and agitation. B-Right, 2x a day, helped a lot with that. B-2 alone may also. But in general, the longer you take B-12, the easier it gets. And initially, although the most severe symptoms are in the first 2 weeks, it does take longer to stabilize. However, even with years of taking it, if you make a major dosage change, you can still be wiped out by symptoms.

I have not yet tried ALCAR, but one person on our forum turned all red and her family was going to take her to the ER. She got through that, but I think reduced the amount after that.

-- Vic

 

[dannybex]

Yeah, I don't know what the answer is, but most docs who are familiar with ME/CFS and also autism, recommend starting with microscopic doses. and slowly working up. Vitamins, etc., need minerals to function properly, and on other threads there have been suggestions that minerals such as manganese (for example) may be deficient in some folks, and/or may become depleted if one takes too much b12 or folate, etc. Also, B2, which works with both folate and b12, may also be depleted.

I found I couldn't tolerate b6 at all -- I would get almost instant neuropathy/tingling -- every single time I took even a tiny dose. That finally resolved after I added b2...and showed that I wasn't deficient in b6, but needed the cofactor.

Also, it's interesting that Fred note angular chelitis as a symptom of folate deficiency, which it can be, but it is most often associated with a B2/riboflavin deficiency.

 

[Freddd]

Hi,

One of my major symptoms were electric sensations,twitching and buzzing in my nerves throughout body, and most intense in spine and brain regions.Initially when I started the protocol with mb12, the sensations intensified. Now one can perceive that as getting worse or as Freddd mentions, nerves 'waking up'. I agree that he came from a coma like state, and many of us from a wired but tired situation. But I perceive that wired but tired state also characteristic of neurological malfunctioning. My symptoms did get worse, lasted for about two months and then the intensity of that startup was significantly reduced. Then I added adb12 to the protocol and the symptoms worsened even more, indicating adb12 deficiency. Then when I got a bit comfortable with the adb12 titration, I added Acetyl L Carnitine to the protocol(ALCAR). ALCAR totally blew me out, and this was just a few days back. ALCAR has made my symptoms increase tenfold as compared to the mb12 startup response.I almost felt psychotic the first time I took ALCAR. I had to and am still titrating it very carefully. Freddd mentions that a hyper response indicates extreme deficiency. Even though I feel terrible and this is the reason I think many don't continue with this protocol. I suspect myself to fall into the adb12/carnitine hypersensitive category,with cord,brain issues with little body involvement. I also have the anxiety characteristic as a base mental condition and exhibit a number of psychiatric symptoms.

This thing you mention, losing nerve function or myelin disintegration. I understand what you're saying. But can't THIS be the rebuilding process?

I am trying to see all these horrible effects in a positive light. My own experience and understanding of this is as follows:

- initially,mb12 produced startup at affected neurological regions
- b-complex,potassium and folate added to protocol
- startup intense for the first two months
- added other vitamins, some co-factors
- adb12, and l-carnitine produced more intense startup at affected neurological regions.
- reassessed folate and potassium intake, had to increase both.

with adb12 and carnitine,experienced startup at more regions, which were thought to be not affected. I perceive this as increased sensitivity. I have increased pain and sensations at many more places in my body now.Maybe they were already there and I have gained the ability to sense them. Increased pain sensitivity has been mentioned by Freddd, I think. Or maybe the supplements start working at affected neurological regions, and the initial process is very uncomforable. My hands go numb now,and they have never gone numb before. My mental state is also much more agitated. This signifies the initial response, which is a hyper response. ATP startup,methylation, whatever processes are there, they must have finally started working after months/years of being dead. I have the same doubt with the worsening,but if you read carefully what Freddd has said in his last threads (see most recent threads and contents on his profile), you will gather that this is actually a positive sign. The HYPERSENSITIVITY IDENTIFIED thread is very useful if you read word by word carefully.
Link: http://forums.phoenixrising.me/index.php?threads/hypersensitivity-identified.16104/

I would like to know what does Freddd mean by 'neurological brightening'. Is it worsening of symptoms from an increased nervous system sensitivity viewpoint, or is it healing of thse symptoms?

Also,I know the feeling/sensations of myelin disintegration. Now what I feel is even worse than those sensations. If this is a healing/startup response, it is surely worse and much more painful. No pain,no gain theory?
Maybe this is the essence of Freddd's protocol? One has to pass through this darkest night to reach the dawn?
Worsening indicates extreme deficiency and maybe they get better over time,if one has the ability to continue with the protocol? The worsening takes away most of the motivation,right?
I need the courage to endure these crashes.
I'm trying my best to stick to the protocol by titrating the dosages.
Freddd, you are needed here on these forums.

Hi Arx,

Sounds like things are going right along. The fact that AdoCbl made ANY DIFFERENCE AT ALL of the type you mention is because it and the carnitine are WORKING in the mitochondria to produce ATP on which most reactions in the body are dependent. L-carnitine can be micro titrated easily which will control the "acceleration". The unpleasantness appears to be caused by damaged neuron startup making them very irritable. If you were not deficient of AdoCbl and carnitine, they would really have no effect as there would be nothing more for them to do. AdoCbl goes and sits in the mitochondria mostly with that remaining in serum being excreted at 99% in a day or two.

When MeCbl is taken all the nerves "brighten" revealing damage in nerves that had been numb or ignored for years. A person can loose 70% of nerve function before it is noticeable at all. When that damaged 70% starts waking up it does not feel good. On the other hand being aware of it one can be aware of positive changes over a period. A nerve coming back from a demyelination (from my experience) is first number, then big jolts of pain, then constant excruciating pain, then painful tingle, then fading to earlier tingles, cobweb/hairs feelings, warm wetness and other paresthesias then hypersensitive and finally fading to more or less normal sensation or muscle control or bladder control or whatever. And that can happen to hundreds of locations in each foot or leg or whatever. It is quite unpleasant. What did you expect, caviar and Champaign? I think some people do. This is normal healing effects. Things like the low potassium or low folate are induced deficiency symptoms and other things like B1, B2 and B3 can play into that. All of the Deadlock Quartet plays their roles in healing the nerves as well as other things. If everything needed is not present than it breaks partially healed somewhere else with different symtpoms.

 

[Freddd]

Yeah, I don't know what the answer is, but most docs who are familiar with ME/CFS and also autism, recommend starting with microscopic doses. and slowly working up. Vitamins, etc., need minerals to function properly, and on other threads there have been suggestions that minerals such as manganese (for example) may be deficient in some folks, and/or may become depleted if one takes too much b12 or folate, etc. Also, B2, which works with both folate and b12, may also be depleted.

I found I couldn't tolerate b6 at all -- I would get almost instant neuropathy/tingling -- every single time I took even a tiny dose. That finally resolved after I added b2...and showed that I wasn't deficient in b6, but needed the cofactor.

Also, it's interesting that Fred note angular chelitis as a symptom of folate deficiency, which it can be, but it is most often associated with a B2/riboflavin deficiency.

Hi Dan,

Yes B2 deficiency does have that associated. However, more B2, beyond some optimum amount makes it FAR worse. With b2 augmented in so many foods and vitamins these days it is almost impossible to be actually deficient in it. In 8 years and thousands of people going through startup and of those who did not get startup until they tried Zinc, magnesium, methylfolate, AdoCbl, L-carnitine fumarate, SAM-e, vit D, Vit C, D-ribose and a few others, not a single one who had a stalled startup got it started with B2. However, of those who got it started and added more B2 and had symptoms (detox many called it), the B2 caused more and worse cheilitis and other folate deficiency and potassium deficiency symptoms.

In practice I have seen up to 5% perhaps functionally deficient in D to the extent of preventing startup. The score for B2 on that is approximately 0.000%. I would say that while it may in fact cause cheilitis when a person is starving for it (unenriched white flour) and B2 is the most limiting factor that is exceedingly rare post WW2, a person is far more likely to be limited by AdoCbl, MeCbl, L-methylfolate and LCF (90-95%).

 

[Skyline]

Tried this last November 2012 - my symptoms got worse, and new symptoms appeared. I got fibromyalgia in legs in particular where I had had none before - so my functionality was reduced. I also got buzzy neuropathic symptoms, which were the first things I remarked. So this meant i had to stop the protocol.

Taking or not taking potassium didn't seem to change anything.

Based on what I know now I believe the MB12 I was taking was just getting oxidized since it was not getting transported into my system and as a result increased oxidative stress. My health diagnostics test later showed higher than usual (even for CFSers) "oxidized" glutathione - I potentially caused this with the protocol.

 

[ahmo]

I'm glad to see this poll here, though disappointed to see no takers on filling it out... That is my big question regarding Fredd's protocol and it's success. I am eagerly anticipating getting my labwork together and getting started on the protocol myself, but I am surprised and confused to feel the consensus throughout the site as that of underlying hopelessness for a lasting cure. If Fredd's protocol healed HIM, and Dr. Rich and others have been successful with it as well, why are we not hearing more hope and healthy anticipation about it throughout this site?

Hi Tara. I've had good results w/ Freddd's protocol. Rich's SMP was not effective for me, hydroxyB12 and folinic acid never helped. I was reluctant and then v cautious in implementing Freddd's, since Rich's comments seemed to point to Fred's particular circumstances, suggesting this was not useful for the masses. However, each of the 4 Deadlock Quartet components have had positive effects for me. I'm still not at v high doses yet, as I'm detoxxing bacteria and metals, and don't want to push anything too far. My mental energy is much better, my physical energy somewhat improved. I feel stable and more relaxed than I have for a decade. I'm doing other things, particularly GAPS diet, and lot's of minerals (Se, Z, molybd, mg, manganese) And have needed increased potassium. I'm happy w/ my progress. The 2 links below have been helpful to me for establishing dosages. Before I began, I spent hours and hours reading the various threads. this was before the Feb. 2013 methylation review, linked below, which is the best summary of everything that came before. Best wishes to you, ahmo

http://forums.phoenixrising.me/inde...t-hole-insufficiency.22614/page-2#post-345537

THE COMPLETE METHYLATION REVIEW Fredd Feb 2013
http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

 

[yarnee]

I voted no change.