After almost 2 years - still struggling with my protocol

[Moshi]

I am about to do something drastic - I just don't know exactly what..? After almost two years on the methylation protocol, I am still struggling to get it right. I feel like I've been missing something very fundamental all this time.

I have tried to be a good sport and have pushed up my daily doses to about 7 mgs of methylfolate and 15.20 mgs of MeCbl. I have stayed on this level for at least the past 6+months....sometimes I am doing alright, but most of the time I'm not. This is how it goes;

When I get up in the morning, if it's been a reasonably good night (I have insomnia+two small kids that frequently wake me up) I can sometimes feel quite alright. Then, on an empty stomach, I start taking 5mgs of MeFolate, some Carnitine (mostly CarnitAll yealding 600mgs of Alcar fumarate) with a drink containing ca 500mgs L-methionine and Ribose, sometimes v little TMG. After 30-60 mins I add in 5 mgs sublingual MeCbl, sometimes some sublingual NADH (about 25 mgs + 100-150 mgs CoQ10) and after that I'm done for. Zonked out for most part of the day. The initial energy and mental clarity I felt I had before taking these supps vanish completely and is replaced by massive brainfog, muscle weakness, fatigue and sometimes slight tremours/hands trembling.

I have tried adding more niacin = no effect, I have tried adding potassium = no effect, I have tried adding salt+potassium = no effect, I have tried to add much more MeCbl = no effect.
Like I said; I still take 7-8 mgs of methylfolate daily (divided dose, twice/day) and 15-20 mgs MeCbl (sublingual, and every third day as transdermal injection). With my second, midday dose of 2 mg Me-folate I also take an additional 250mg Carnitine, and of course, more MeCbl with that. But this does not make a difference. I'm still in the fog, the deep, deep fog.

Me being homozygous for MTHFR 1298C and MTRR, (with ME/CFS) it is perfectly logical to me I need to supplement with MeFolate and MeCbl, the question is...how much? and how? and when? And - why is it making me feel so bad....?! I need to make some change, apparently, to tweak the protocol in some direction....I just do not have any idea how...where to start.

I should mention a few things; I take a daily low-dose B-complex (Douglas Labs at moment). I am NOT taking supplemental folic acid or cyanoCbl. I probably get a fair amount of 'natural folates' from veggies, have never tried to limit this. I sometimes exchange the MeCbl for AdCbl, no change when it comes to 'side-effects'.

I have improved during my 2 years on the protocol, various symtoms have diminished and over-all increased functionality, however, still suffering from extreme fatigue, brainfog, weakness.....I do not identify with the listed signs associated with potassium loss, paradoxical folate insufficiency and/or over-methylation. I do not have anxiety or heart-palpitations or angular chelitis or acne-type leasions. None of that. Just a complete and numbing lack of energy. All day, every day.

Does anyone here recognize this? Thanks so much for your attention!

 

[Valentijn]

@Moshi - Methylation protocols don't cure ME/CFS. At most some symptoms will improve a bit.

But B12 and folate are only cures for B12 and folate deficiency.

 

[Helen]

and after that I'm done for. Zonked out for most part of the day. The initial energy and mental clarity I felt I had before taking these supps vanish completely and is replaced by massive brainfog, muscle weakness, fatigue and sometimes slight tremours/hands trembling.

Hi Moshi,

A methylation protocol doesn´t help all, but is well worth testing. Maybe you already get a lot of folate in your diet that compensates for the MTHFR mutation? The supplements you take are clearly not good for you, at least not all together. You might have had improved without them. Nobody knows. If you would like to discuss this further we can do it in a private conversation in Swedish ;-).

 

[minkeygirl]

Methylation did nothing for me. I never had the brightening others talk about with B12, Never felt any better at all so I stopped after a few months because it was too complicated and I had too many side effects.

I know I have methylation issues but I just didn't find any benefit.

Maybe time to look at things actually causing your ME/CFS?

 

[caledonia]

One major co-factor which is missing is magnesium (required to make SAMe).

You may need to separately address the gut, heavy metals such as mercury, the adrenals and thyroid.

Click on my signature link to find the document "Roadblocks to Successful Methylation Treatment" where I identify 20 or so potential roadblocks.

 

[dannybex]

Methylation is just part of the picture. I wish it were that simple. But yes, consider looking into other factors as others have mentioned. Plus mitochondrial issues, which methylation doesn't address at all.

Seems also like you're taking massive amounts of folate and b12. Doing so would put demands on other nutrients, (minerals, proteins, fats, etc.)…

The so-called 'paradoxical folate deficiency' is (as far as I know) something coined here by Freddd. Not sure if it actually is documented in any research or studies.

 

[Moshi]

Thanks y'all for your wisdom @Valentijn - I know you're right. I know I obviously have problems with MeFolate/MeCbl and I believe I should continue to supplement, but perhaps in munch, much lower doses....I realize I had unrealistic hopes for the methylastion protocol. Severe crashes keep happening, randomly as it seems, and even though I have improved since starting the protocol, I am still severely limited by my ME.
@minkeygirl - You're right too, There are other things causing the ME/CFS, and I have tried to work on these at the same time...however, I am not fortunate to work with a skilled professional like @Helen - would love further discussions in Swedish
@caledonia - I agree, I take magnesium + other minerals daily. I am adressing the gut (gluten and grain-free paleo-ish diet and high quality probiotics etc) and have removed amalgams + did DMPS frequent dose chelation for about 6 months afterwards but ran in to major problems so I had to give that up completely, have treated my adrenals (I have adrenal insufficiency) with glandulars, pregnenolone + vit C and I treat my hypothyroidism with NDT. All of these may have contributed to my overall improvement.
@dannybex - I need to look into addressing mitochondrial issues like you say, need to learn more how I can do just that.

My conclusions as of today are: Methylators may have contributed to some improvement but never made me feel good, it was never as I felt incleased energy and clarity when I took MeFolate+MeCbl, however, sometimes it didn't affect me much, and sometimes it made me feel awful.
I still suffer from severe crashes that last for days, weeks and sometimes months on end. I have tried to find a link between them and my protocol but it may be no connection there whatsoever, crashes happen. I still have ME/CFS.

Today I will refill my pill-boxes and decrase my methylators quite a bit. I am contemplating to take these more towards the afternoon/evening but that may turn out to be a bad idea for someone with sleeping issues...? Anyone here who find that they do better when taking MeFolate+MeCbl in the evening?

 

[minkeygirl]

@Moshi, (please put more paragraphs I'm struggling to read this)

You don't need a skilled professional to do a lot of things with OTC supplementation.

I didn't have a decent doc for years. I put myself on antivirals back in 2011 when labs clearly indicated I would benefit (I did have a doc do labs but that was the most she would do) and it made a difference.

I refused to sit around and do nothing because I couldn't find anyone with the courage or inclination to help me. Even now, with my naturopath, there are some things she won't do but she does know everything I am doing and supports me.

 

[Moshi]

@minkeygirl - thanks for your comments, I'll try to space this out a bit more

I can very much relate to everything you're saying. I too have very much taken matters into my own hands, have surely not been sitting around waiting to be referred to a ME/CFS specialist as I realized very early on that was never going to happen for me. On top of being my own doctor/lab-rat I have made major lifestyle changes.

I now also have a doc ("GP") that supports me even though I am the one designing (and re-designing) my own treatment plan. She prescribes MeCbl injections, that's about it.

In terms of anti-virals I have considered trying some but have yet only tried a course of OTC Inosine (similar to isoprinosine) with the positive effect of it blocking new infections, I will put myself on another round of Inosine in another couple of months. What (OTC) anti-virals have you tried?

 

[minkeygirl]

Thanks for the paragraphs @Moshi It's my understanding that Inosine ( the OTC version of Immunovir) is an immune modular and not an antiviral. Dr Rey uses it with her patients the same way she uses Immunovir.

I took both Immunovir and Cycloferon and never noticed much from them but there are others here who have taken both.

I started myself on Acyclovir and I did notice results. Not anything huge but I had a bit more energy, didn't get as tired from doing smaller things and could talk more. Talking has always been an issue for me.

When I started seeing my NP in 2013, she started RX'ing Famvir at 1000 mgs. I have recently started on Valcyte which I get on my own but am being monitored by a doctor.

B12 is not really a treatment for ME/CFS. It can help with methylation issues but if you have infections and viruses, it's not going to help with that.

If your labs show you have viruses and you want to try an OTC antiviral maybe try Oxymatrine or Lauricidin (monolaurin) That kicked my butt. If you want RX stuff, you can get it, no doctor required.

Antivirals do not kill the virus, they only stop them from replicating.

 

[Moshi]

@minkeygirl - This is all very valuable information which I will carefully consider. I will get back to you with more questions later, if that's OK with you? Take care!

 

[minkeygirl]

@Moshi Feel free to PM me. And really there are others who know way more than me. I can get them to help too.

 

[caledonia]

T
@caledonia - I agree, I take magnesium + other minerals daily. I am adressing the gut (gluten and grain-free paleo-ish diet and high quality probiotics etc) and have removed amalgams + did DMPS frequent dose chelation for about 6 months afterwards but ran in to major problems so I had to give that up completely, have treated my adrenals (I have adrenal insufficiency) with glandulars, pregnenolone + vit C and I treat my hypothyroidism with NDT. All of these may have contributed to my overall improvement.

Sounds good, except if you never got to ALA then you likely still have mercury in your brain.

I get symptoms of mercury redistribution (basically the same as crashing symptoms) if I do methylation supps over a certain very low level.

So my suggestion would be to back way way off on the methylation to feel more stable.

I'm going to be trying Cutler style frequent dose chelation soon too. Hopefully, once I get some mercury out, I can then increase methylation a bit, then increase chelation a bit, then methylation a bit more, and so on.

 

[Moshi]

@minkeygirl - Thanks so much, I will get in touch later, right now I am just trying to survive, will have to get back to "normal" first before I start adding in something new.

@caledonia - Thanks, I have been thinking alot about ALA lately. When I experience a severe crash like I am right now, I do feel like it may be due to some type of detox crisis / redistribution. I have bad neuropathy right now, difficulty walking, if I had a stick I would use it....
Have you tried ALA yourself before? I Used ALA for about 2-3 months as part of the Cutler protocol (first in combination with DMPS and then on its own for just a few rounds). I stopped doing this last summer when I began to have really strong reactions, unbearable muscle pain, also the ALA gave me an ulcer that still has not healed. It is an acid, after all.

I am still very undecided Re: dosing of methylators, since I first created this post, I have tried first tried to minimize the dose, no change in symtoms, then gradually worked it up again, no change. Now I am almost back to my "normal" dose that did work quite well for a long time (6+ months).

I have had crashes like this before. They scare me so much. However I have always come through them before, and then I have either stayed on the same dose or even increased methylators a bit. I still came through. Now I am just waiting, and praying, and wondering.....?

 

[caledonia]

@minkeygirl
Have you tried ALA yourself before? I Used ALA for about 2-3 months as part of the Cutler protocol (first in combination with DMPS and then on its own for just a few rounds). I stopped doing this last summer when I began to have really strong reactions, unbearable muscle pain, also the ALA gave me an ulcer that still has not healed. It is an acid, after all.

I've tried ALA a few times briefly (before I knew about the chelation/redistribution thing). More than a teeny tiny amount makes me feel worse.

I haven't tried Cutler frequent dose chelation yet, but will soon. DMSA and various other supps (mainly antioxidants) are supposed to help with reactions.

Some people don't tolerate DMPS. I think I might be one of them - it's muscle testing very negatively for me, so I won't be trying it again.

 

[goldberry]

This might be helpful for you, if you haven't already seen it. It's from my Yasko Methylation Pathway Analysis to help sort out which B12 you need, based on your genetic data.

 

[Ninan]

I need huge amounts of Mg, that lowers my need for folate. I take maximum doses plus magnesium baths or foot baths every evening. I have to take folate continuously during the day but during the evening, two hours after taking my first Mg dose, I don't need it anymore. I might even get too much energy if I've taken a lot of folate during the day, i e my need for folate drops a lot. (I have to take Mg at night since I take Neurontine during the day.) Maybe if you take more you'll notice a difference?

 

[Moshi]

Thanks everyone for your advice! I have gone from being very functional 2 weeks ago to currently bedbound. My legs do not support me and I can just about move a few steps using crutches. my ams and hands are very weak too. I have a constant headache with dizzyness and nausea. The feeling of 'brain-swelling' with a burning sensation under my scull (no fever).
Yes, I have gone to the ER, was discharged because all vitals were good and no sign of acute neurological dysfunction (stoke etc). Now I know that I am not going to die, just yet. I realize this is just good ole ME at its absolute worst. I had fooled myself into believing that I would never get this sick again, but BAM! all of a sudden ME returns with a vengeance!
I am still raking my mind trying to understand what triggered this dramatic decline (apart from the obvious - pushing myself altough my body kept signalling me to stop, for months on end). The notion of "pacing" does not fit into the reality of my life
My plan is stay in bed, reduce all supps and meth-protocol (not stop, reduce) so that I won't push it, still supplement Mg, minerals, vit C etc and facilitate detox with gentle methods (spirulina, pectin, charcoal). Any other advice Re: how I can wake up from this nightmare is most welcome! Take care y'all.

 

[Helen]

So sorry to hear about your sudden crash.

The notion of "pacing" does not fit into the reality of my life

I don´t believe it fit in anyone´s life, if not a must
Had the doctor also dismissed his own child or wife with these obvious neurological symptoms a.o.? I get really upset when I read about how you were treated but too often this happens in Sweden nowadays ( I have been in medicine for decades).
I had about the same symptoms as you have and they made a lumbar puncture to analyse my spinal fluid. That was when high Borrelia antibodies were detected - then there was no effective treatment but that´s another story.
I would call the Infectious clinic as they are used to exclude or confirm Borrelia and other possible infections that might affect the nerve systeme. Don´t let you be dismissed with these severe symptoms.

 

[Johnmac]

@Moshi: How are you doing now?

Lovely, heart-rending post. It's like reading Chekhov (courage in adversity, etc).

@stridor has used Cutler chelation + methylation to all but retire his CFS. He is now finishing it off by killing longstanding infections, as I understand it.

I've done Cutler chelation for 3 years, with some modest gains - but nothing you'd write a book about. ALA is a strong antioxidant, so I get an energy lift when on it.

You could use DMSA in place of DMPS. (DMSA also chelates lead.)

I am useless to you scientifically; my only insight comes from being in a cult when younger: it helps me see how quickly we fall into paradigms: Cutler chelation, Freddd protocol, etc. Whilst offering lots of good stuff, the forums for these approaches do become a little cult-like.

Sounds like you have broken out of that, & won't be constrained by one or another person's concept of healing. I reckon that's essential.

The only other thing I can suggest is that fatigue is a symptom of just about every illness on Earth, and maybe yours is (part-)caused by something you haven't thought of yet. I use iodine deficiency as a random example - 96% of people in the West have it, according to one author. Pyroluria? (About 10% have that.) There must be quite a few candidates along those lines. Those two in particular are relatively quick-fixes (which is good); others may be slower. But thinking off the map is likely to be productive.

@minkeygirl nailed how I have been feeling about methylation - too complicated, too many sfx. However I'm going to give the Freddd Protocol another shot now.

Good luck Moshi.