• 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.

Muscle Weakness Since Starting - Advice Please

Oberon

Senior Member
Messages
214
Hi everyone,

I've been trying to tweak a methylation protocol for several months tapering up my doses to see if I can get noticeable effects. Since I've started I've had an improvement in my overall mood, depression, etc, but lack any clear outright effects that some people seem to have. I do believe I have an overall increase in energy and for sure in improvement in mental stability.

My biggest problem is my IBS has worsened and it seems like my muscle recovery has become quite worse, and I fin myself waking up with sore legs, arms and pain in my knees. I'm hoping it will go away and plan on continuing the protocol for a while longer to see if its temporary, but wanted to see if anyone has recommendations that could help.

MB12 and ADB12 - 2 x B12 Oil Spray per Day on average, plus tweaking up with as high as an additional 10000mcg sublingual per each type on different days to test effects. Have tried 50,000mcg ADB12 in one day without seeing a major effect.
Methylfolate - Average of 8000mcg per day
LCF - Now at 1000mg L-Carnitine/2 pills of Doctor's best (No major noticeable effect)
B-Complex - http://www.vitacost.com/thorne-research-stress-b-complex-60-vegetarian-capsules-1
Potassium - At least 1000mg per day and increase depending on symptoms

Other Supplements Taken And Continued Before Starting
Vitamin C - 1000mg
Vitamin D - 10,000IU
Curcumin - 1000mg
Magnesium 400mg

Symptoms I'm Trying To Treat Include:
Chronic Fatigue
Muscle Weakness
Headaches
Blurred Vision and Photophobia
IBS

In terms of genetics in case it helps I have:
MTHFR C677T +/+
COMT V158M and H62H +/-
MTR A2756G +/-
MTRR A66G +/-
MTRR A664A +/-
CBS C699T +/-

Could there be some factor I'm missing? Should I try raising doses higher, or lowering some? Any advice is greatly appreciated.
 

Victronix

Senior Member
Messages
418
Location
California
I know that magnesium played a big role in eliminating most of my muscle pain, and ultimately I had to find one that my gut could tolerate, which were ones that use Albion. It never hurts to try to increase potassium more or have it more often, and see if that helps. For me, muscle weakness was thyroid related mostly, when my levels were all over the place. But that can also be low potassium (or a lot of other things!). Sometimes how you spread things out during the day makes a difference. You might want to also look at iron. That's a lot of D to be taking -- I try to take a small amount (800 IU) and then get a lot of sun, which has benefits that D as a supplement does not.

Blurred vision and photophobia are worth researching more. I have no suggestions on those.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Potassium and Magnesium can be used up like rapid fire on methylation protocols. You might want to try bumping up the supplemental potassium to around 3000mg, switch to a transdermal magnesium trying to push upwards 1000mg of magnesium a day in that delivery system. Upping sodium with a bit of sea salt can also be beneficial. Fred also mentions, as well as others that if you mega dose the non b12/folate b vitamins it can create an insatiable appetite for potassium. Supposedly no more then 10mg of the other b vitamins will keep things balanced without creating other deficiencies from the high dose b12.
 

pogoman

Senior Member
Messages
292
Symptoms I'm Trying To Treat Include:
Chronic Fatigue
Muscle Weakness
Headaches
Blurred Vision and Photophobia
IBS

In terms of genetics in case it helps I have:
MTHFR C677T +/+
COMT V158M and H62H +/-
MTR A2756G +/-
MTRR A66G +/-
MTRR A664A +/-
CBS C699T +/-

Could there be some factor I'm missing? Should I try raising doses higher, or lowering some? Any advice is greatly appreciated.

you sound close to what I went thru the past few years.
do you know your TCN2 SNPs status?
my suggestions-
ignore the heterozygous SNPs for now.
do a somewhat challenge test with the circumin in case you have sulfur issues.
which I mean stop taking it, see if there are noticeable results then start up again if only if taking it results in improvement.

stop the vitamins, mag and b complex temporarily as they can agravate ibs.
drink water, if you have ibs-d you would be surprised how quick this can dehydrate you.

add in coq10, choline and riboflavin, not as an all in one pill but as separate supplements.
these help cell mitochondrial energy and recovery.

if you are under doctors care, certain lab tests can help determine if you have a myopathy and whether its inflammatory or not.
creatine kinase
lactic acid dehydrogenase
c-reactive protein
erythrocytes sedimentation rate
 
Last edited:

Oberon

Senior Member
Messages
214
Thank you to everyone for the feedback I really appreciate how you're taking the time to help me.
___________
Per Victronix and Martial

It's interesting to hear Albion was easier on your stomach, it is fortunately the type of magnesium I'm using too, and I will see if upping the dose helps over the next few days.

I've had my thyroid tested by a few doctors and nothing appeared to be out of the norm, but I do wonder if something was still missed there.

My Iron levels were closer to the high range on my last blood test and I tend to eat a lot of meat.

My Vitamin D was low on my last blood test even with 5000IU supplement for several months and being in Canada with the winter makes it difficult to get sun in the natural way so I decided to try going to a high dose. I will try experimenting down again to see if there's any difference. I can say it has given a noticeable improvement in my depressive tendencies, which I am grateful for.

I will definitely try upping my potassium to 3000mg per day and switching to magnesium oil in a few weeks per your suggestion. I'll also start adding in some sea salt. That's interesting to note that other B vitamins could be impacting the absorption, I'll try a lower dose one to see if it helps.
____________
Per pogoman

I will most definitely heed your advice in terms of genetics.
My TCN2 C766G is +/+ (GG), what's the impact of this?

I will drop the curcumin to see if it helps thank you for the suggestion.

I do think if this keeps up I will have to take a holiday from my protocol, but I would like to try it for a few more weeks to see if I can tweak it.

What type of dosage is normal for riboflavin; I do have some COQ10 and Choline lying around somewhere so I'll try adding them in and seeing the impact.

Unfortunately my doctor isn't too keen on me these days, but I will see if he will test me for the above to get some ideas.
____________
Thank you again to everyone!
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Thank you to everyone for the feedback I really appreciate how you're taking the time to help me.
___________
Per Victronix and Martial

It's interesting to hear Albion was easier on your stomach, it is fortunately the type of magnesium I'm using too, and I will see if upping the dose helps over the next few days.

I've had my thyroid tested by a few doctors and nothing appeared to be out of the norm, but I do wonder if something was still missed there.

My Iron levels were closer to the high range on my last blood test and I tend to eat a lot of meat.

My Vitamin D was low on my last blood test even with 5000IU supplement for several months and being in Canada with the winter makes it difficult to get sun in the natural way so I decided to try going to a high dose. I will try experimenting down again to see if there's any difference. I can say it has given a noticeable improvement in my depressive tendencies, which I am grateful for.

I will definitely try upping my potassium to 3000mg per day and switching to magnesium oil in a few weeks per your suggestion. I'll also start adding in some sea salt. That's interesting to note that other B vitamins could be impacting the absorption, I'll try a lower dose one to see if it helps.
____________
Per pogoman

I will most definitely heed your advice in terms of genetics.
My TCN2 C766G is +/+ (GG), what's the impact of this?

I will drop the curcumin to see if it helps thank you for the suggestion.

I do think if this keeps up I will have to take a holiday from my protocol, but I would like to try it for a few more weeks to see if I can tweak it.

What type of dosage is normal for riboflavin; I do have some COQ10 and Choline lying around somewhere so I'll try adding them in and seeing the impact.

Unfortunately my doctor isn't too keen on me these days, but I will see if he will test me for the above to get some ideas.
____________
Thank you again to everyone!


Sorry I forgot to add definitely get your doctors approval before bumping up the doses. Some people with certain underlying issues can have adverse effects from higher dose supplemental potassium/magnesium.
 

pogoman

Senior Member
Messages
292
Per pogoman

I will most definitely heed your advice in terms of genetics.
My TCN2 C766G is +/+ (GG), what's the impact of this?

I will drop the curcumin to see if it helps thank you for the suggestion.

I do think if this keeps up I will have to take a holiday from my protocol, but I would like to try it for a few more weeks to see if I can tweak it.

What type of dosage is normal for riboflavin; I do have some COQ10 and Choline lying around somewhere so I'll try adding them in and seeing the impact.

Unfortunately my doctor isn't too keen on me these days, but I will see if he will test me for the above to get some ideas.
____________
Thank you again to everyone!

well we share the 766GG allele altho I think sterlings app has the number transposed.
its actually 776GG as one will find if researching the SNP number RS1801198 the app lists also.

the GG allele means you have reduced ability to move B12 into cells.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127504/

Transcobalamin occurs in many genotypes (39), and several authors have clearly documented that the genotype present, notably the P259R (TCN2 776C→G), influences the protein's total concentration. Total transcobalamin concentrations are ≈20% lower in individuals with the 776GG genotype than in individuals with the 776CC genotype; individuals with the 776GC genotype have intermediate values. Genotype distribution varies somewhat between studies but is ≈30% for P259P (776CC), 50% for P259R (776CG), and 20% for R259R (776GG) (9). HoloTC concentrations are influenced to a much lesser degree by the transcobalamin genotypes, although this influence was significant in some studies (9, 40, 41).

I have found taking lithium orotate has greatly reduced my muscle pain and increased recovery after physical activities, it helps move serum B12 into cells.
I have never had issues with taking high amounts of B12 or folate either, but with the lithium it seems the more methyl B12 I take the better I feel.
right now I'm taking
100mg riboflavin 2x daily
100mg ubiquinol coq10 2x
500mg LCF 2x
500mg choline 2x
quatrefolic methyl folate 400mcg 3x to 4x plus a single 10mg methyl folate sublingual in morning
methyl B12 probably 30mg spread thru out the day, liquid and sublingual
lithium orotate 5mg 2x to 3x daily
 
Last edited:

Valentijn

Senior Member
Messages
15,786
well we share the 776GG also, I dont' think theres a 766G.
The convention is to put the wild-type allele before the positional number, and then the variant allele afterward. Hence C776G would be the normal way to write it, though 776C>G is another alternative.
the GG allele means you have reduced ability to move B12 into cells.
G or C would be the alleles. GG, CC, or CG would be the possible genotypes. It would be incorrect to refer to GG as an allele.
 

pogoman

Senior Member
Messages
292
The convention is to put the wild-type allele before the positional number, and then the variant allele afterward. Hence C776G would be the normal way to write it, though 776C>G is another alternative.

G or C would be the alleles. GG, CC, or CG would be the possible genotypes. It would be incorrect to refer to GG as an allele.

I edited my post after noticing the discrepancy, didn't see your post so yes 776 seems to be correct.

haven't even tried to remember genetic vocabulary rules, still trying to figure out one carbon metabolisms lol
 

Mary

Moderator Resource
Messages
17,376
Location
Southern California
@lakesarecool - I agree with Martial, it very well could be you need more potassium. I get blurred vision, body aches and severe fatigue when my potassium drops. I've been taking 1000 mg. a day for a long time and just discovered that a new supplement I've started, DMG (dimethylglycine) is boosting my energy and also increasing my need for supplemental potassium even more. I went through a couple of very bad days this week with severe fatigue, blurred vision and aches before I thought of the potassium connection. I more than doubled my potassium, drinking a couple of glasses of low-sodium V8 which has 900 mg. potassium in an 8 oz. glass, in addition to taking 1000 mg. potassium gluconate, and my energy is returning and vision is clearing up. And yes, as Marital says, good to run this by your doctor.
 

Oberon

Senior Member
Messages
214
I just want to say thank you again to everyone for helping me out with all of this. I'll be experimenting in the next bit and will update as I go along.