Anyone on Freddd protocol?

[yellowspain]

Hello. Has anyone followed Freddd's advice and started his protocol? If so, how did you do it?

 

[jaybee00]

No. Unfortunately there is no evidence that any of these protocols treat ME/CFS.

 

[linusbert]

there is no evidence that anything treats cfs.
what even is cfs... nobody knows. a set of symptoms and physiological changes many share. thats it.
but many here got improvement by trying one thing or another. so its worth trying.
and some few have a isolated deficiency of one or another thing and can get big improvements.

freddds protocol is about getting methylation back to work. its suspected that freddd has a very rare genetic defect or multiple which dont allow for one b12 compound be metabolised into the other, thats what i got by following the discussion.
but others also reported some improvements and others reported no improvements or worsening of symptoms.

what i can tell for any methylation protocol, which many do not point out big enough imho. you need a source for methyl groups, thats like methionine or cholin (like in egg yolks). and also glycine as methylgroup buffer which is mainly in bonebroth.
the vitamins only transport the groups around but are poor donors. (they are donors but no source or a very poor source)

and you need both, the methylgroup donor as well as the important vitamins b12, b6, folat to get the methylation going.
people with excess methylgroup sources like methionine rich with a poor vitamine diet will get problems (high homocystein), and the other way is true too, having those vitamins plenty but not enough methylgroup sources will make troubles too (demyelation).
a high homocystein blood value is strong indicator that methylation is fck up and a lack of those vitamins is present.

so make sure of that when you start methylation protocols.

 

[yellowspain]

Hello. I want to know experiences and doses they use. Freddd says that it is necessary to take b9 and b12 together and in large doses, but it is also true that, as you say, he had special conditions that affected his state of health and that others may not have. I was thinking about supplementing with b9 and b12 in small doses and on alternate days, but not if this would be useful. I also have doubts about what is called refeeding syndrome in the forum. Daily doses are supposed to be adjusted based on the body's nutrient needs. If this were the case, using small doses would be useless.

 

[yellowspain]

there is no evidence that anything treats cfs.
what even is cfs... nobody knows. a set of symptoms and physiological changes many share. thats it.
but many here got improvement by trying one thing or another. so its worth trying.
and some few have a isolated deficiency of one or another thing and can get big improvements.

freddds protocol is about getting methylation back to work. its suspected that freddd has a very rare genetic defect or multiple which dont allow for one b12 compound be metabolised into the other, thats what i got by following the discussion.
but others also reported some improvements and others reported no improvements or worsening of symptoms.

what i can tell for any methylation protocol, which many do not point out big enough imho. you need a source for methyl groups, thats like methionine or cholin (like in egg yolks). and also glycine as methylgroup buffer which is mainly in bonebroth.
the vitamins only transport the groups around but are poor donors. (they are donors but no source or a very poor source)

and you need both, the methylgroup donor as well as the important vitamins b12, b6, folat to get the methylation going.
people with excess methylgroup sources like methionine rich with a poor vitamine diet will get problems (high homocystein), and the other way is true too, having those vitamins plenty but not enough methylgroup sources will make troubles too (demyelation).
a high homocystein blood value is strong indicator that methylation is fck up and a lack of those vitamins is present.

so make sure of that when you start methylation protocols.

Hi. Thanks for answering, why excess of methyl vitamins can cause problema? I ask this because initially the b12, b9 defect is what causes demyelination. I had homocysteine and amino acid tests done. The amino acids (methionine) are fine. My b9 is very low, I cannot tolerate folic acid, taking it made me have symptoms of folate deficiency .

 

[Mary]

Hi @yellowspain - I started taking methylfolate in 2010, after reading several of Freddd's posts. My folate was testing low also. I'd already been taking methylcobalamin for many years but started the methylfolate then and it gave me a nice boost in energy, followed by my potassium levels dropping quickly a day or two later. My chief symptom was severe fatigue. Fortunately I had read about the possibility of this happening and had potassium tablets on hand. Each tablet has 99 mg of potassium so I titrated up from 200 or 300 mg a day until I got up to 1000 mg of potassium a day, in divided doses, and the horrible potassium-related fatigue went away at that dose. I've had to take it ever since, but I've also been able to take methylfolate ever since, as well as continue with the methylcobalamin.

The RDA for potassium is 4700 mg and I believe that's the minimum, so my 1000 mg of potassium, or 10 tablets, was equal to 25% of the RDA.

I don't know if you're in a methyl trap or not. What I suggest is you try taking methylfolate, starting low and going slow, and see how you do. I think I started with 1000 mcg which for many people would be too much. Unfortunately we all react differently to these supplements. You might try half of that. I took it every day and gradually increased my dose until I got up to around 3000 mcg as I recall. I also kept up the B12, around 5000 - 10,000 mcg a day, as liquid methylcobalamin which I put under my tongue and let it get absorbed there, bypassing my digestive tract.

You can have doubts about refeeding syndrome but I suggest be prepared for it anyways. If I had not been aware that the methylfolate could cause my potassium to drop so low, I would have had to stop the methylfolate because of the severe fatigue. As it was, I was able to raise my potassium levels and keep taking the folate, which made a really nice difference in my energy and functioning.

A good source of potassium to start is low-sodium V-8 - it's high in potassium and if one is low in potassium, they often start to feel better within a couple of hours. Sometimes 2 or 3 glasses might be necessary.

Take a look at this thread - it has some very good information about methylation and potassium: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

 

[Mary]

@yellowspain - one more thing - you wrote somewhere that you had a bad reaction to glutathione. Someone replied that glutathione depletes B12.

First, I'm not sure that glutathione depletes B12 - this study says the opposite: https://pubmed.ncbi.nlm.nih.gov/156...he reduction,related to vitamin B12 depletion.

One other possibility is that the glutathione caused a detox reaction. This happened to me several times when I tried to take it - it would make me tired and feel sick. Eventually this stopped happening. It's a long story involving glycine and inositol and glutamine which I won't go into here.

So the glutathione may not be bad for you - it may not be depleting your B12 and may instead be causing a detox reaction.

 

[yellowspain]

@yellowspain - one more thing - you wrote somewhere that you had a bad reaction to glutathione. Someone replied that glutathione depletes B12.

First, I'm not sure that glutathione depletes B12 - this study says the opposite: https://pubmed.ncbi.nlm.nih.gov/15606130/#:~:text=However, glutathione inhibits the reduction,related to vitamin B12 depletion.

One other possibility is that the glutathione caused a detox reaction. This happened to me several times when I tried to take it - it would make me tired and feel sick. Eventually this stopped happening. It's a long story involving glycine and inositol and glutamine which I won't go into here.

So the glutathione may not be bad for you - it may not be depleting your B12 and may instead be causing a detox reaction.

Thank you very much for answering and sharing your experience. I am worried because I have neurological symptoms and I don't know if they are due to the folate deficiency that my tests show or an added deficiency of b12. I have had tests done for holotranscobalamin, homocysteine and methylmalonic acid, but I still have no results.

Although from what I have seen, you can need b12 without being deficient. What worries me about Freddd's protocol are the high amounts it uses, coupled with the refeeding syndrome that I don't quite understand.

The other day I took folic acid and had symptoms of folate deficiency, based on Freddd's protocol, am I supposed to have taken additional folate? I have seen an elaborate list of refeeding symptoms, but the folate deficiency symptoms coincide with the b12 symptoms, so how do I know if I need more b9 or more b12?

.....

In relation to glutathione, I think that, as they say in the forum, it depletes b12. In my case it was not a detoxification reaction, but rather a feeling of discomfort that has been growing as the days have gone by and that still continues and is generating neurological symptoms.

I guess it depends on each person. In my case, I think glutathione has influenced my low vitamin B9 level.

 

[Byles]

For me methylcobalamine, methylfolate and enough potassium. For the latter regular food beats potassium supplements easily: I eat at least a banana everyday, plus other things not necessarily daily like dates, potatoes, carrot juice, water melon, etc. I used to need more in one day, but lately if I have at least a banana it's enough. This prefents my migraines. I can't be without else the headaches are unbearable.
Sorry I can't really help you, but just to let you know that these protocols really can help people even if not taken as far. It took me awhile to find a balance with it.

 

[Mary]

What worries me about Freddd's protocol are the high amounts it uses, coupled with the refeeding syndrome that I don't quite understand.

Yeah - like I said earlier, we are all different. I think anyone who tries these products needs to start low. They shouldn't start with the high doses Freddd took. And if you do okay with a low dose, then I would gradually increase it and see how you do, and hopefully find the sweet spot for you. I can take more than many people here, but less than others. I was taking and still am taking, both methylfolate and methylcobalamin. I think they are generally taken together.

About refeeding syndrome - you should educate yourself so you know what it is. This article has a good definition of refeeding syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia.1 6

So refeeding syndrome usually happens to people who are severely malnourished, but it also happens a lot to persons with ME/CFS. It makes me assume that we are chronically malnourished even though we may eat right, etc.

You know you're low in folate so I think there's a good chance that taking methylfolate may cause you some symptoms of low potassium, which would be a refeeding syndrome reaction. Someone described refeeding syndrome as this, that your body has adapted to a low level of functioning due to a nutritional deficiencyu, and when you suddenly add in missing nutrients, it ramps things up, getting the cells working properly - and this increases the need for potassium (or phosphorous or a few other things) and this causes a functional potassium deficiency. Suddenly your body needs more potassium to utilize the added folate.

Again, please look at the first post in this thread - I linked it above. It explains why we most often need more potassium when starting methylation: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

The other day I took folic acid and had symptoms of folate deficiency,

If you took folic acid (and not methylfolate) the other day, that can cause a folate deficiency. Folic acid competes for absorption with folate. In other words, folic acid can prevent folate from being absorbed. And it's estimated 30 -60% (yeah, a huge spread there!) of the population has trouble utilizing folic acid. It's also added to a lot of foods, which can contribute to a folate deficiency. Anyways, if you took folic acid the other day, and not methylfolate, it could easily cause a folate deficiency.

Folic acid is synthetic. No one really needs folic acid - what we need is folate.

 

[linusbert]

folic acid is garbage for most. if you need a passive form take folinic acid.

 

[cph13]

Hi all...its been a long time...
@yellowspain ..We are ALL so different. When I began this journey in 2013 all of Fredds' info was extremely useful. I use lots of his recommendation to this day.
Fredd has certain generic errors ( I call them) thus I moved cautiously. I am homoz MTHFR a1298c. I'm also a malabsorber.
I've found testing is imperative esp. b12 n folate. The gold standard test for B12 is MMA if high your b12 is not getting into your cells. My MMA finally lowered
with methylcobalamin injections. IMHO, injections are the.only way to go esp if you are experiencing neuro issues. Don't mess with low b12 brain and SFN is prevalent just for starters.
Sublingual b12 just ruined my teeth and did not improve my health. As for folate ( the only one I'd take, Neva the synthetic folic acid) I stopped a long ago. My RBC folate is v. high. I can't figure that out but my Dr is not concerned. I am.
I get a weekly IV of b complex, vit c and a mix of GSH, NAD (1-200mg) and additional b12 methylc. (As high as 5000mcg)
I absolutely love GSH. I often wonder if @Freddd ever figured out why it didn't work for him.

Get you iron checked esp. if you've had CV. Post my RBC, mcg, hg, thyroid n hormones were all over the place. I did get iron infusions for 7 months. I probably have another gene blip with iron.
B12 getting into your cells takes a army. I love the info. Provided by the research of Greg r. Jones, PhD. He developed a B12 oil n the other co factors. Due to shipping both cost n delays, for now, I'm sticking w my b12 iv's with the co factors recommended by Greg r Jones readily avail online I stringly suggest everyone ck. out the research avail on b12oils.com. the oils work for many...they were NOT a fit for me for a few reasons.
Happy healing XO C

 

[Riddle]

Hi,

I started back in 2013 or 14, after reading extensively on this forum. What an eye opener it was!

IIRC, I focused on the methylation trap as symptoms of demyelination were my most troubling problem at that time. The protocol was difficult to comprehend, given the severity of symptoms!!

In the UK resources are restricted under the NHS for medical investigations, so I proceeded without any medical advice. The reference ranges for vitamins such as B12 are dubious (ie. way too low) and, as a former analytical medical laboratory manager, knew there was little to be gained by such erroneous information..... besides which, cyanocobalamin was definitely not recommended

So I started with methylcobalamin and dibencozide sublinguals plus methylfolate. At first, each every day. After I felt fully recovered (about three or four years?) cut this back to one every other day, alternating. Nowadays I skip every other day while alternating the two sublinguals (now methylfolate and methylcobalamin are combined).

As mentioned elsewhere today, I also started to take additional HCl betaine, to improve my digestion (protein heavy meals). IBS is my other main symptom that I still struggle with (I'm convinced the GIT is the root of many chronic health problems )

I also take Omega oil capsules and additional C and other B vitamins, but assume the fat soluble (A, D and E) are sufficient from my food and sunshine! I might add that I tend to avoid eating anything that is fortified with folic acid...

I remember taking additional magnesium for a while, but stopped after a time - not sure why?!

I appreciate that every single person here is unique and how their CFS/ME affects them is also unique; the road to recovery will be equally so. My only reason for being here on this forum is because, over the decades, Doctors would fail to find any traditional medical diagnosis for my suffering and say - "you have CFS" - or "you have ME" or "idiopathic peripheral neuropathy" "depression with anxiety" "early onset arthritis" "PMT" "insert any other meaningless label here" - yada yada yada.....

No genuine help was ever available, as it was, in their old school "medical model" professional view, given the lack of any diagnostic evidence for anything they could treat conventionally -

"all in your head" (yes, I went down the mental health route too)

I don't know if I have the MTFHR gene or not, or whether this matters. What has resulted from a lifetime of chronic and destructive health struggles is that I have ended up childless and alone (a failure in many people's eyes) but, now as a "pensioner", I feel healthier than I ever have done before in my life

Thank God for the internet - I can't honestly say what might've happened to me without this website. Having learned today of Freddd's passing - well, I can only say I will always be eternally grateful to him for all that he did here to help himself and others like myself through this forum.

Thank you for reading - I hope this may help someone Good luck to all of you trying to take back control of your lives!

 

[triffid113]

Having learned today of Freddd's passing - well, I can only say I will always be eternally grateful to him for all that he did here to help himself and others like myself through this forum.

Omg! Where did you hear this? Do you know what he died of? I thought he was gonna outlive me for sure!

 

[triffid113]

glycine as methylgroup buffer which is mainly in bonebroth.

Interesting… I followed Freddds protocol for years and never heard of this. What does a methyl group buffer do for you? I have a COMT +/+ which is supposed to make me sensitive to too many methyl’s but it never has….

 

[triffid113]

L’Engle says this about glycine
Methyl buffering: Maybe consider TMG or another kind of glycine?

I used to take TMG. I wonder if that’s why I never noticed a problem with too many methyl’s even though I’m COMT +/+ ?

Anyway, I got my bloodwork back this year and my homocysteine is around 12 and life extension says every 3 points above 6.3 is blah-blah more chance [significant] of a cardiovascular event. So I decided to take an extra methy b supplement at night (only - no TMG) and also told my boyfriend to do so (he has mthfr genetic defect, homocysteine 12). Well so a few days ago zi developed a headache that won’t go away on its own or with aspirin, lightheaded, brain fog, difficult sleeping though tired, and I suppose you could say cramping, although it just feels like my muscles or skin want to turn themselves inside out. I have had this problem before and don’t really know how I got it to go away. Do you think this could be low potassium? Because I have not had low potassium in years… my potassium used to run low even before taking methylated forms of b. I used to take potassium for hypertension but haven’t done so in years due to potassium not being low. Before taking a second methyl b supplement my potassium was not low. Guess I’ll retest now. If not low CANNOT take potassium! Anyway thanks for a clue - something to try. I will report back and if it is low potassium , I’ll report how long it took to get that way (seems like less than a month).

 

[linusbert]

Interesting… I followed Freddds protocol for years and never heard of this. What does a methyl group buffer do for you? I have a COMT +/+ which is supposed to make me sensitive to too many methyl’s but it never has….

a methyl buffer takes up excessive methyl groups, so they do not do havoc.. and when the body needs the methyl groups again it can access it so its not lost
glycine is of such.

nicotineamid on the other hand is a sponge, it gulps methyl groups up, and then they are gone.

this genome things are complicated, you do not know what genes actually are expressed by your body. this could change according to situation and lifestyle multiple times. alone vitamin D intake is changing expression of genes.
that makes the genes a very bad indicator for functional metabolism. you only can see the risk factors and potential bottle necks. but its highly individual and may change over your life i feel.

 

[triffid113]

a methyl buffer takes up excessive methyl groups, so they do not do havoc.. and when the body needs the methyl groups again it can access it so its not lost
glycine is of such.

nicotineamid on the other hand is a sponge, it gulps methyl groups up, and then they are gone.

this genome things are complicated, you do not know what genes actually are expressed by your body. this could change according to situation and lifestyle multiple times. alone vitamin D intake is changing expression of genes.
that makes the genes a very bad indicator for functional metabolism. you only can see the risk factors and potential bottle necks. but its highly individual and may change over your life i feel.

Great. I always feel like I'm at the fulcrum of a teeter totter and constantly having to modulate this way or that to try to maintain an elusive equilibrium! So the term to look up would be "methyl buffer"? Because I take a lot of supplements and I would like to check each one to see if any of them perform this function...maybe one of my herbals or something. I used to take 2g of TMG, but barely ever take it now - too many supplements! What if I jettisoned something critical! Thanks for putting me onto this!