Neck tightness and pain on Methylation treatment

[droit]

Hello,

I've had two Methylation Pathway Panels, 4 months apart. The second one showed good improvement just from the classic Simplified Protocol, but there is still clear methylation cycle dysfunction per Dr. Van Konynenburg's typical characterization of a Methylation block (depleted GSH, depleted SAMe, etc).

The protocol has been great, but I have noticed when I'm making my best gains I've noticed intense neck and back muscle tightness and pain. Its like some critical nutrient is being sucked up and my neck muscles are constricting.

I get plenty of potassium from coconut water, bananas and tablets. This effect is not proportional to potassium.

I figured there was some amino acid I was using up, so I've supplemented glycine and NAC, but that doesn't resolve the issue either.

Any advice would be greatly appreciated.

 

[Al Klein]

"plenty of potassium from coconut water, bananas and tablets" are you sure? the daily amount of potassium is quite high. I have a muscular pain in my right arm that I am attributing to potassium def and some leg pains

 

[shannah]

Could it instead be a magnesium depletion?

 

[droit]

Thank you Shannah and Al Klien for your responses.

I get 1,500-2,000 mg spread through out the day, mostly in coconut water and bananas (tablets rarely unless needed to avoid too much K+ at any one point).

Also, I take 400mg of Mg at night.

 

[shannah]

Sorry droit - wish I had another suggestion for you.

 

[fozzaw]

Sometimes an imbalance of methylfolate and mb12 causes my sphenoid sinus to flare up, and the main symptom is neck pain and tightness as the actual sinus hurts only if its really bad. E.g. too much methylfolate, not enough mb12. The easiest way for me to tell is by putting my face over hot steaming water for 15 minutes. If my neck feels better, its always a sinus problem.

 

[droit]

fozzaw,

This is very interesting. Thank you for the suggestion. I will try to see if there is a pattern in my active folate to B12 intake as well as try this steam approach.

 

[caledonia]

I was getting some neck/shoulder tightness and pain when I started methylation. It felt the same as the neck tightness you get when you're stressed out. When I discontinued it went away.

This is a sign of CBS expression. If you've had your SNPs done and have the CBS mutation, you should suspect this. The answer is to discontinue methylation supps and treat for CBS. Once that's completed, you should be good to go with methylation.

Also, if you have multiple BHMT mutations it can act like CBS mutation even if you don't have CBS. I'm lucky enough to have both.

Magnesium deficiency would be more like twitching muscles, charley horses, restless legs while sleeping causing insomnia or unrefreshed sleep, heart palps, etc.

 

[droit]

Calendonia,

Thank you so much for the feedback. Certainly this effect is proportional to the methylation supplements. But there is a lot that happens inbetween simulating Methionine-Synthesis/BHMT and the end products of the transulfuration pathway.

What makes you suspect CBS is the main culprit?

The transulfuration pathway can lead to roughly three things: Sulfate/sulfite, Taurine and/or glutathione. If we assume CBS and downstream causes the neck tightness, which end product do you think is most to blame?

 

[taroki]

Oh wow, I have this too. Maybe I have CBS also, can't wait for my 23andMe test results.

My neck/shoulder muscles tighten up big time especially when stressed. I thought it was because of the toxins clogging up the lymph nodes there. But it keeps coming back. I figured it was the mercury draining from my brain, or the toxins coming out of my root canal (which I will be extracting in 2 weeks).

It is still tight even after putting Moor Mud on it last night (hoping to remove more heavy metals). Is it really CBS problem??

 

[Valentijn]

It is still tight even after putting Moor Mud on it last night (hoping to remove more heavy metals). Is it really CBS problem??

None of the CBS SNPs tested by 23andMe are capable of causing the undesirable "up-regulation" problems which Yasko likes to sell expensive cures for.

 

[droit]

Valentijn,

Thank you for weighing in. I've enjoyed your analysis of the popular SNPs in the enzymes of the methylation cycle.

The CBS SNPs are at best controversial. You've previously cited some weak studies. But my favorite CBS related data is Figure 4 from Rich's trial, which shows that C699T could be draining metabolites from the Methylation Cycle.

http://www.maartensz.org/me/RESOURCES/NEW/Van Konynenburg - Treatment Study of Methylation Cycle Support.PDF

As I said, CBS is at best controversial. There are other interpretations of that data and we should discuss it in a different thread, but lets assume that CBS mutations could jack up the outflow from the cycle and to sulfur, taurine and glutathione.

Which of those would cause the behavior we are describing here?

I don't believe this phenomenon is CBS related because when I take B6, a cofactor of CBS, I get lethargic. Nothing about tight muscles.

It feels more to me like a raw material is being sucked up. I can feel my muscles tightening like they are being slowly wound up. And I can also feel my skin drying out.

I would really to get to the bottom this because I want to move from hydroxo-B12 to methyl-B12 permanently. And this is the only thing standing in my way.

If anyone has any research ideas, I am happy to look into it.

 

[Valentijn]

The CBS SNPs are at best controversial. You've previously cited some weak studies. But my favorite CBS related data is Figure 4 from Rich's trial, which shows that C699T could be draining metabolites from the Methylation Cycle.

That is somewhat interesting - but certainly doesn't indicate any 10-20x upregulation as claimed by Yasko and others. The study is, however, limited by having a very small sample size, to the extent that it wasn't possible to get a statistically significant result after treatment.

The ranges for each group are also huge, to the extent that some +/+ are above the mean for the -/- group, and the +/+ group completely overlaps the +/- group. It also looks like the effect is rather modest - the greatest average difference is when +/+ is at 240, and -/- is at 280, indicating a difference of 17%.

I'd also be interested to know if the better SAMe+SAH values corresponded with decreased symptoms. While the other research does indicate that CBS C699T has an impact, it looks like a minor one, with all of the research indicating risk factors only for the slower -/- version.

Any idea what the normal combined range for SAMe + SAH is? I'd be curious to see how it compares to normal - that is, is there some likelihood that the patients with levels on the lower end would have some ill effects associated with it?

 

[droit]

That is somewhat interesting - but certainly doesn't indicate any 10-20x upregulation as claimed by Yasko and others.

I would also add that this data is from people with a grid lock methylation cycle. I would wonder what this data would look like should it be in no 'methylation block' people with the mutations - maybe run an experiment that measures the flow (since healthy people may be able to replenish methionine as needed so there may not be variable in SAMe + SAH).

There are a lot of interesting things to discuss in terms of the fight over homocysteine at the MTR/MTHFR, BHMT and CBS junction. I, like you, challenge the notion that we need to 'treat' CBS. But I think that is a different thread - and I'll happily join you there to discuss it.

For now, I want to get this neck pain under control. This was the first symptom I felt 3 years ago as I plummeted into my methylation block. And now I'm experiencing it again as I try to pull myself out.

 

[taroki]

I just read on the other thread, that the tight neck pain problem we have is most likely due to ammonia.

Have you tried L'Ornithine, Yucca, or Nitrous Oxide? I am going to pick up some tomorrow. I am having problems sleeping again as I feel it building up.

 

[maddietod]

When I was doing methylation, I took 5 tablets 5 times a day to cope with astonishing tightness in my neck and upper back. Have you tried taking 500mg of potassium every, say, hour to see if the pain goes away, as a test? That's how I figured out the dose I needed.

I had blood work done after 6 months of this level of supplementation, and I was barely normal for potassium.

 

[taroki]

Madietodd, 5 tablets of what may I ask?

My neck/shoulders is always tight eventhough I haven't started methylation treatment yet. What does this mean?

I have not tried potassium on its own yet. What would it do exactly in this case? And what blood test did you do? I have an appointment with the pain specialist soon and I will request all that I can since i only see him once a year.

 

[maddietod]

Sorry, potassium. I have potassium gluconate because I could get a huge bottle cheaply. Each caplet yields 99mg of potassium.

Freddd talked a lot about potassium on his methylation threads; his opinion was that methylation startup uses huge amounts of potassium, and that if you don't have the potassium, methylation grinds to a halt. I don't know about that, but it sure fixed my cramped muscles.

This was some standard blood test (USA)........."Complete Metabolic Panel." It's similar to this: http://requestatest.com/comprehensive-metabolic-panel-testing?gclid=CInHy-D_wLkCFeh9Ogodgm8AOw.

I don't know why you have tight muscles, or what potassium will do for you. I figured this was a cheap, easy, and safe experiment to run on myself so I just did it. I think Freddd's instruction was to take 5 at a time until the cramping stopped. I went for hourly for no particular reason.

 

[droit]

Taroki,

Your ammonia finding is by far the most reasonable explanation I've heard. Particularly from Goggling around for hyperammonemia. Also, ammonia is a bi-product of the transulfuration pathway (whether it be from an up-regulation or not).

I actually spoke with Dr. Audya (from Vitamin Diagnostics) and he recommended Alpha-Keto-Glutarate for ammonia buildup, but I never really respected it.

Could you cross post the other thread link here for future reference?

I am not going to lie. I've had some Alpha-Keto-Glutarate (L'Ornithine) so I popped a couple last night after your post and I could feel my shoulders dropping and relaxing within 30 minutes. I don't believe it would conjugate ammonia that fast so I don't know what to make of it. But I feel great. .

I would love to see some replicates. Please post your experiences with L'Ornithine, Yucca, etc here.

 

[droit]

madietodd,

Is it safe to take that much potassium in pill form at once? There are a lot of warnings about putting that much potassium in one place at one time in the GI tract.

That's why I have stuck to foods (e.g. coconut water, bananas) for high doses.