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Poor Methylation Reaction - Tingling Legs, Increased Heart Rate, Depression

Messages
5
Hi @lakesarecool, Could you PM me? I have had a very similar experience to yours... ended up in the ER twice, had what I took to calling "spirals" of intense suicidal depression, tremors, tingling and burning in legs, etc. Like waves washing over me. Elevated heart rate (like 160 on waking up). This started December 8th and I am still dealing with the residuals.

I was taking 45mg sublingual B12 and 15mg methylfolate with no problems, until I removed fortified foods one week, then the next removed food sources of folate. Then the **** really hit the fan.

More to cover, but I'd rather do it privately. Do touch base if you don't mind, I'd like to talk more about it and compare notes.
 
Messages
48
Location
Ohio
@krzysiek.s and @lakesarecool I am experiencing similar symptoms (started off horrifically 4 months ago, but still persist) and at the time I stopped all supplements with no relief. My ND has me now on Magnesium and B-minus, but I still suffer from tachycardia, palpitations, sensitive skin issues (never had in my life) irritated mucous membranes, insomnia, myoclonus, agitation that feels like skin is crawling, I am super apathetic and feel almost devoid of emotion most times (where as before I was very upbeat and social), alternating between normal GI and IBS like symptoms (also, never had GI problems prior to this) ....have you guys found anything to help stop this??? It's been 4 months and I just can't believe I haven't felt like myself in this long.
 
Messages
48
Location
Ohio
The B minus I have been taking for a couple weeks contains b1. Do you suspect I need more than what's in that? I had no intention of starting the methylation process actually...I went to the ND for lethargy and headaches. Come to find out after I was put on a multi that contained methylfolate and methylcobalamin along with adenosylcobalamin and after two weeks in I crashed. I've been trying to learn all about this stuff NOW that I'm in it. I ended up getting my 23 & me done and I am homozygous for COMTv158m, COMTh62h, MTHFRc677t and heterozygous for VDRbsm and VDRtaq, mtrra66g, BHMT02, CBDc699t, and SHMT1c1420t. Does this make me a genetic mess? Lol. Ugh. I'm not sure why after stopping after 4 months that I'm still having so much trouble. I've lost almost 30lbs and am down to 110lbs. This is madness. Will it stop on its own? I feel bad in hat I wish I'd never started this in the first place :(
 
Messages
48
Location
Ohio
About a month ago I was taking niacin about every four hours to try and stop the symptoms. I took it for several weeks then stopped, but my ND recommends I stay on it for a while seeing as my symptoms still persist. I forgot to mention that I also have days when it seems every bit of water I drink runs right through me. I will be very thirsty, and within 5 minutes of drinking I will urinate seemingly everything I just drank...this happened day and night for a couple days a month since this started. Sorry for throwing so much info out there. Just hoping I can get back to the person I was before starting all of this....
 

Eastman

Senior Member
Messages
526
The B minus I have been taking for a couple weeks contains b1. Do you suspect I need more than what's in that?

That is a possibility. I think some of the members on the forum who reported problems with their B1 status had also been taking a B complex.

About a month ago I was taking niacin about every four hours to try and stop the symptoms. I took it for several weeks then stopped, but my ND recommends I stay on it for a while seeing as my symptoms still persist. I forgot to mention that I also have days when it seems every bit of water I drink runs right through me. I will be very thirsty, and within 5 minutes of drinking I will urinate seemingly everything I just drank...this happened day and night for a couple days a month since this started. Sorry for throwing so much info out there. Just hoping I can get back to the person I was before starting all of this....

The niacin will help you mop up excess methyl groups but I don't see it reversing a B1 deficiency if that is the actual cause.

I can't be sure why you are experiencing copious urination occasionally. B12 is said to increase aldosterone production, which in turn tends to cause salt and water retention and potassium loss. Perhaps after you stopped the methyl supplements, your body is simply releasing the excess water.
 
Messages
60
Location
Michigan
@Oberon How are you doing lately? And did you ever read up on what I suggested? Freddd's Deadlock Quartet on these forums?

The thyroid also came to mind when you talked about your issues swallowing. Could even be a goiter or thyroid nodule you may not be aware of?

Random question; and you can answer me privately if you'd like but are you taking any opiate meds at all?

And for @Awags1986 ... I've had similar experience as you. The anhedonia is the worst for me. Feel disconnected and don't care about anything. The effects last bout one week and start to lift. But, the thing that always seems to help me is Seeking Health brands Trace Mineral complex. I take half the capsule, with food (very important)... And I feel better the next day.
 

Oberon

Senior Member
Messages
214
Sorry for the delay, I'm not on the forum a whole lot anymore and did not see the messages.

To this day I have the below symptoms:
Dysphagia and regurgitation
Stiff Tingling Muscles
Acid Reflux
Depression off and on

My thyroid did come back clear after some testing and I don't take any opiate meds.

At this point years later I can say that pursuing high dose vitamin/methylation therapy has permanently damaged my body and worsened my overall health. I would not recommend it to anyone without at the very least a knowledgeable doctor's supervision.

To this day I wish I could take it back and would encourage anyone visiting this methylation sub-forum to proceed with lots of caution and not to get caught up in the success stories you see on the internet as tempting as it is.

Thank you again to everyone for all the help.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Oberon Thank you for the update and sorry you are still experiencing symptoms. I have gained a lot of respect for methylating nutrients over the past 10 years, and currently on a doctor supervised IV, IM and oral nutritional protocol.

My experience has been quote positive, but we are using knowledge of my 23andme results as well as Genova Diagnostics NutrEval tests do every 9 months or so.

The best way to set up.a protocol is to work backwards through gut health, having adequate B1 and molyndenum in the transsulfuration pathway, adequate B6, glycine, glutamine, and NAC to.make glutathione, adequate magnesium, potassium, B2, B6, B12, trimethylglycine, and methionine, and enough 5-MTHF in the folate cycle.

Occasionally, I've had unpleasant symptoms - headaches, nausea, intestinal.pain, general sick feeling and pain, but I've reported them in detail to my doctors who.have adjusted my program to fix the bad symptoms.

There are answers out there... It's not necessary to be miserable...
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
I have been following Fred's protocol for several years now and this is what I've discovered: Once you begin to add methyl donors, your body discovers that it wants them and when you stop, you have problems. I started B-12 sublinguals twice, the first time at 1/8 of the Enzymatic therapy 1000mcg tablet, and each time I ended up in the ER with atrial fibrillation, which resolved after several hours. My realization after the second event was that I not only needed B-12, it was necessary to my health and symptoms. And so it went.

I now use 3-4 sprays of the Methyl and Adenosyl/Methyl Oils per day.

Folate was more difficult. I've been up and down on dosages, somehow could never go higher than about 20mg/day without feeling my head was spinning and suffering ll those hyper feelings that you can get. But over these past several years, I slowly added many mineral by low titration. This occurred even before the methyl donors with magnesium and low dose iodine--about 200mcg/day--and continued after with selenium--to about 300mcg/day--molybdenum to about 225-300/day--copper--to about 2+mg/day, and just within the last five months boron--now to about 7mg/day.

The boron has been most challenging and confounding and, over time, for me, seemed to have a symbiotic relationship with folate. It took me nearly three months of misery to realize I needed much more folate. And amazingly, I am now able to take much higher doses. Believe me, this is not what I want, but my body has made clear via all the refeeding symptoms that I have grown familiar with, that my body wants and needs the higher folate doses.

I am currently up to about 35mg of folate/day and suspect I am not quite there yet, that is, to satiety.

In the interest of full disclosure, I have only recently--this past April--had all my amalgam safely removed, and have done about 6 rounds of Andy Cutler's Chelation Protocol at low doses of ALA. I am convinced that many of these chronic health issues have toxic metals and poor absorption at their root. And amazing as it may seem, I still believe there is a healing for each of us--with the right combinations of support.

I also rely on tests to see where my body has settled over relatively short periods of time. That is, I use the NutrEval at least once a year, and over the past year I have done it twice to confirm my hunches and keep me on track. I am about to have my first ever Doctor's Data Toxic and other Elements Hair Test. It ought to show mineral levels over the past few months and give me a sense of whether I am supplementing with them adequately.

And if you haven't done the 23andme genetics test, I would recommend it. I wouldn't have any faith in this approach if I hadn't been able to see where my genetic issues were.

My symptoms in addition to varied heart irregularities (only a few years ago a surgeon wanted to do a heart ablation on me--now it's not discussed at all with my cardiologist), have been fatigue, widespread muscular pain and atrophy, insomnia, depression and chronic ibs--all of which are benefitting from high doses of folate...

As to the depression: I can say with some certainty that when I feel weepy and find myself thinking of stepping out in oncoming traffic, it has reliably been resolved by higher folate. There are studies done of Deplin, which is nothing more than folate at 15-20mgs/day as an alternative to anti-depressants...:https://www.news-medical.net/news/2...ong-term-value-of-Deplin-in-treating-MDD.aspx

Good luck to us all...
 
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Messages
15
@KappaMaki @krzysiek.s @lakesarecool @Awags1986

Hey guys, did any of your symptoms go away?

I took methyl b12 for a week and I woke up one daying feeling drugged. I was VERY dissociated (body felt numb, had to constantly touch my body), rapid heartbeat, hyperreflexia, facial tingling, really irritable, facial numbness, head pressure, hands were peeling, looked pale, and really weird head sensations. I would wake up with a cold sensation on the top of head down to my neck, it would be hard to read, and very dissociated. The symptoms have gotten a little bit better, but I've been dealing with this for months. Doctors don't think methyl b12 can cause this, so I get crazy looks everytime I bring it up. I don't think I'll ever be back to normal now.
 

Oberon

Senior Member
Messages
214
@Learner1 & @Kathevans
Thank you for sharing you feedback. It's always interesting to hear how people react very differently to methylation based protocols.

I can tell you on my end of things I have been to numerous doctors, including functional MDs, and several naturopaths. I've spent a lot of money, time, pain and frustration on trialing supplements and tests including every supplement mentioned except ALA.

After all of that I am still not recovered from the damage of pursuing methylation based treatment.

I strongly advise to anyone reading this to think twice before pursuing methylation, especially without the support of someone who actually understands the biochemistry behind it.

This forum has over 20,000+ members and I've seen less than 10 actual success stories from methylation based treatment after reading hundreds of threads over the years.

From my standpoint it isn't worth the risk vs reward, especially without the appropriate medical supervision.

@QuantumMechanics

I'm sorry to hear about your poor reaction to starting a methylated supplement.

Please see some advice for a poor reaction to methylation in the thread below:

https://forums.phoenixrising.me/ind...p-in-the-er-and-symptoms-still-persist.51865/

I can't promise it, but I do believe there is still a very strong chance you will get back to normal. A few months is not that long when it comes to recovering from a poor methylation reaction.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Methylation is essential to life. It supports many functions in the body. It must be customized to the patient and balanced. Needs will change over time.

As a stage 3 cancer survivor, I became aware that imbalsnced methylation can promote cancer, so doing nothing is not wise. (See attached)

Usung someone else's protocol is not wise. We all have different genes and different levels of toxicity, so something that works for domeone else could be disastrous.

Many people start mobilizing toxins as they toy with folate and B12, without all of the other cofactors needed and get themselves into trouble. This is why regular testing and adjusting is essential to customizing a protocol to each patient.
 

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