• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

LEARNING FROM A CRASH RELAPSE

arx

Senior Member
Messages
532
Hi, where I can find the exact dosage etc of the updated Fredd's protocol?

Hi,

I don't think he has mentioned dosages of everything in his updated version. I've bookmarked some of his important threads, which I'll share here.

- Active B12 Protocol Basics


-NEW - Revised Active B12 and Folate Protocol with Micro-titration

-
Some inforamtion on titrated mb12-Metafolin-potassium ratios and startup

-Hypersensitivity Identified

Do note that Jarrow is no longer recommended, and if I may add a personal opinion, consider titrating dosages properly of whichever supplement you find yourself sensitive to.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Freddd, seems you check in on this thread so I wanted to post something interesting I read:

http://www.healthyawareness.com/articles/about-autism/msm-sulfates-tmg-b6-magnesium.aspx
Copper is very often too high. It must be brought down by giving zinc, molybdenum, vitamin C and manganese. While a person is high in copper, they should NOT be given cysteine supplements; else it could make them very ill. (Supplements of glutathione might be a problem too because glutathione contains cysteine.)

----

So...I wondered if copper level might be the key to who is sensitive to NAC and who is not??? Just something to ponder for you.
I, myself, took zinc supplements all my life as I had read all diabetics are low in zinc and I wanted to avoid diabetes (in fact I was diabetic twice under stress and am not now). In retrospect that was a pretty wild (as in unsound) idea, however in my case the extra zinc kept me from high copper levels and I have since found I do indeed need tremendously high doses of zinc during allergy season and a significant amount of zinc at all times (due to I always have low level allergies and zinc is required to rebuild mucous membranes destroyed by allergies). Of course, now that I am over 50 I have to be careful to take copper too since estrogen helps women absorb copper and I don't have that assist going for me anymore. (For some reason the replacement hormones don't really put me back to a 20 year old biochemistry - boo-hoo!)

Triff
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Hi,

I don't think he has mentioned dosages of everything in his updated version. I've bookmarked some of his important threads, which I'll share here.

- Active B12 Protocol Basics


-NEW - Revised Active B12 and Folate Protocol with Micro-titration

-Some inforamtion on titrated mb12-Metafolin-potassium ratios and startup

-Hypersensitivity Identified

Do note that Jarrow is no longer recommended, and if I may add a personal opinion, consider titrating dosages properly of whichever supplement you find yourself sensitive to.
Thanks also. It's hard to find this info now. I want to add a note...IMHO a lot of people here try the shotgun approach and I think that is the source of some of the startup issues. This protocol improves methylation and methyls are used to turn on/off chemical reactions throughout the body. These chemical reactions are turned off now if you do not make enough methyls and when you turn them on, they need cofactors, which will bring to light your other deficiencies, which may be serious (such as low potassium can be very serious). I think you will have less startup issues if you have a good multivitamin in place or in whatever way you want you supply yourself with a WIDE base of nutrients to minimise deficiencies. I know Freddd calls for a multivitamin but I think many people ignore it to go for the "core" or what they think is the "core" of the protocol. I wouldn't do that myself.

Best wishes
 

arx

Senior Member
Messages
532
Thanks also. It's hard to find this info now.

Hi triffid113,

Well, this info can be found on Fred's profile, then going to the postings section and down below going to 'Find all threads posted by Freddd'. I explained this with images for Rich's profile here: http://www.forums.phoenixrising.me/...h-saved-on-their-computers.19778/#post-303340
Can be done for any member in the same fashion.

I want to add a note...IMHO a lot of people here try the shotgun approach and I think that is the source of some of the startup issues. This protocol improves methylation and methyls are used to turn on/off chemical reactions throughout the body. These chemical reactions are turned off now if you do not make enough methyls and when you turn them on, they need cofactors, which will bring to light your other deficiencies, which may be serious (such as low potassium can be very serious). I think you will have less startup issues if you have a good multivitamin in place or in whatever way you want you supply yourself with a WIDE base of nutrients to minimise deficiencies. I know Freddd calls for a multivitamin but I think many people ignore it to go for the "core" or what they think is the "core" of the protocol. I wouldn't do that myself.

Best wishes

If I plan to restart Fred's prtocool, I think a wide base of established basic vitamins and minerals for some time, then adding in the essentials of his protocol SLOWLY, so that they are tolerable. Now it becomes a custom approach, with custom titrations. One can read whatever information and experiences are available on these forums, but with the experimentation on oneself,one has to be careful with things. Someone might be sensitive to something, like I am hypersensitive to carnitine and sensitive to adb12 and mb12. So I have to go slow with all these. You might want to read on the Deadlock Quartlet which Fred has described in his recent posts. I have tried his protocol for some months and had to stop because I added too many things too quickly, and became a bit impatient. Bam, burn out. Everyone has their experiences, it will be wise to go in a systematic manner, and reading all info one can find written by Fred on these forums.
Potassium is very important. Getting checked regularly for electrolytes and minerals was quite useful for me.

To share my personal experience, when everything is added, then small things like Vitamin D and Zinc had a great effect on me. Even Vitamin A. I felt nothing with these before,but after adding mb12,adb12,minerals,carnitine, I used to have sudden headaches,nausea,etc. from things. One could see how these things are working together, if at all those unpleasant reactions meant that they were working properly. Also, the hypothesized 'rounds of healing' was clearly visible in my case. A symptom would intensify during startup of mb12, then go after a month of taking mb12. I thought that that symptom has healed. But after 2 months when I added adb12 and carnitine, the same symptom returned in a tenfold increase in intensity of that symptom. There my mind thought of 'rounds of healing'. Anyways, this is just my experience. Someone else's might be totally different as we all have different symptoms and responses to things. But I guess its good to share experiences.

Best regards.
 
Messages
57
Hi, I just got back Metametrix OAT and comprehensive stool analysis. I'm having a lot of heart palps and don't know where to start. I have had a Yasko profile CBS++ and MTHF++. My B12 is high (also on blood tests) and my B6 is Very High. I am having a hard time hanging onto weight and the Oat shows me in Metabolic ketosis (acute detox). I am shaking all over right now, and have not been out of bed much in weeks. My glutathione according to OAT is gone.

The recc on the OAT was 1200mcg 5-methylfolate and 850mcg Dibencozide. My multi vitamin right now has NAC in it, but not a lot. I've looked at every multi in the house and they all have something in them. I have the Neurological Health formula from Holistic Heal and have done half tab in morning with a few of the other multi.

They also recc glycine 4000mg, lipoic acid 100mg, nac 400mg coQ10 30 mg. ANY help would be appreciated. I'm shaking like a leaf and have tons of heart palps.

Is there some way to raise glutathione without crashing!!!!

Thanks,
Debbie
 
Messages
25
Debbie, others are probably much better able to give suggestions. My two cents is this: You are likely unable to utilize the B12 so it is staying in the bloodstream. I would think that the folate is crucial. The shaking might be adrenal, might be need for potassium or electrolytes. I find that good sea salt and Vitamin C is crucial for my adrenals to function. Vitamin C is the raw material that the adrenal gland uses to make hormone. Maybe try sea salt, C, potassium, magnesium then add a little folate, then try to find a B complex and trace minerals you can handle, and scrap the multi-vit. Then try the ADB12. You'll probably have to work up on the folate and ADB12, watching potassium levels, and then will likely eventually need MB12. BTW my doctor does not follow the guidelines sent out with those lab results, he throws those pages away. Not saying it is worthless info, but I wouldn't follow it like it is the answer.

I had low glutathione and the precursors by testing, and was taking glutathione, NAC, glycine, taurine. But with the active B12 protocol, once I started folate (was already on MB12 shots), I immediately no longer needed glutathione or NAC, and after getting my MB12, ADB12 and folate levels up high enough it appears that I may be able to cut back on glycine and taurine now.

Everyone is different but hopefully what has helped me might help you.
 
Messages
25
One other thing, Debbie, you will likely need to eventually add Vit A, Vit D3, Vit E and fish oils, and there might be some other co-factors for the folate/B12 to work as per Freddd's suggestions.
 
Messages
57
Thanks soooo much EastWest. I am so new to this, that this is really a challenge right now. After reading Fredd's protocol (wow testing non brain fog abilities), I'm not sure I will EVER understand it, although some of it is making sense. I had figured that the b12 was not getting into the cells, but could not understand why. I have probably been to 4 cfids doctors in the last 5 years and not had ONE suggest it might not be getting into the cells!!! I don't think there is a one good doctor in the Houston area.

I talked to a doctor in California today who could possibly interpret the tests, but he is only 425.00 an hour. ugh. We have spent soooo much money on useless tests. So what test do I get to find out how much glutathione I have, and glutamate etc. I have had a huge issue with diarrhea and weight loss, so I have to be careful with magnesium, and vitamin c. I have been doing the liposomal and SEEM to be tolerating 2g a day, and I do the magnesium gel.

I had been doing the RVK protocol before going to a Lyme clinic in Kansas, and he took me off all of the supps. I have recently gone back on some. Metyl b12 1g (sublingual drop), 5-methyl folate 400mcg, 1/4 tab ADB12 (country life right now). I have been doing fish oil, sea salt and some trace minerals, but not sure about the ones I have.

I also just started back on the Vit d3 and the E. Hopefully that will get me doing a bit better. I really need to find a good doctor that can give me input.

I appreciate your time to help me.

Blessings, Debbie
 
Messages
25
Welcome. So it sounds like you have a few of the basics on board but I don't see potassium. I would think that would be worth a try for the shaking and heart palps. Sounds like you have lyme maybe, so you have a lot going on there.