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My methylation-experience so far (Side effects - need guidance)

Messages
62
Things have really started to spiral down again for me since upping the Methylfolate. I have been on 10mg+ last couple of days. While it initially seemed to get me better, I've experienced intense stomach pains in my lower abdomen, bloating, gas and general IBS from hell. Good thing is the shortness of breath seems to be almost gone. Could be attributed to higher Potassium intake. Tingling/burning has come back a bit as well as what feels like cramp in my muscles/nerves which makes it hard to grip things for a short moment, general stiffness of muscles. Concentration/short term memory has been taking a hit as well.

Damn you body! why you so complex :woot:

Anyways, been doing some research and thinking that I probably should sort out some things first (dont know if anyone agrees with me here):

Yasko mentions to deal with the Gut and Glutamate/GABA balance before starting methylation. For the latter, apparently the GAD1 gene is implicated in this process of regulation and have role of converting Glutamate to GABA. Ran my genetics data and found out that I had defects (heterozygous) in nearly ALL the GAD1 genes, one being homozygous. According to theory, this could very well explain some things about my anxiety which just been growing and growing the last couple of years. My diet also consists of pretty high glutamate food which is something I didn't really know until now. Thing is, I tried Tianeptine (new type of antidepressant) for a month which really calmed me down, worked incredible well. One of its mechanism is to help balance Glutamate/GABA as well as protecting the NMDA receptors where it partially works as an antagonist. Unfortunately I ran out (pretty expensive) and then started methylation as I got my genetics result.

So right now, I'm thinking about trying to balance the Glutamate/GABA as well as focus on Gut health. I've had increasing problems with my Gut over the last couple of years which I really havnt payed attention to, stupid I know. Probably gonna talk to my doc about this.

As for the methylation-protocol, I'll probably continue but maybe will lower the dose(s) a bit and see how things progress. I still feel positives like energy levels which has been a huge lift for me.
 
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whodathunkit

Senior Member
Messages
1,160
I will say that one reason I probably haven't had more problems with methylation is because a couple of years ago I cleaned up my gut (after being diagnosed with leaky gut), went a few rounds of chelation to clean up heavy metals, plus doing a couple rounds of general detox protocols prescribed by my doctor. I have been fairly "clean" since then, although I relapsed in the crap food department a few times. So without meaning to I was apparently preparing myself for this.

Point being, I realize I don't know all about it although I do have some experience with cleaning up the old bod before being able to progress further. For example, I could not tolerate taking iodine before I chelated. I had to stop it after I originally started, backtrack, chelate and detox, then start again. After I did all that, however, iodine became one of the most valuable supplements I'd ever taken. At least, the most valuable in that there was a noticeable beneficial difference in how I felt before I took it and after I took it. It was most valuable, that is, until this.

Further point being that while I don't know all about it I do have a bit of perspective, and therefore thought it worth mentioning that Freddd mentions IBS symptoms as being indicative of both low potassium and paradoxical methyfolate insufficiency:
******
Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily


Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.

*****
Just throwing it out there. It could be you do need to reduce dosage. But to consider also is are you taking anything that could cause methyltrap, or maybe *not* taking enough co-factors, so could also put yourself into methyltrap that way?

Whatever you decide to do, go with your gut. No pun intended. :p
 
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Messages
22
great thread I'm going to use some of your experience. it's great to have a member take the time for us like this.
 
Messages
62
@ahmo - I've never used pure GABA, mostly because I've heard it does not readily cross the BBB making it sort of ineffective. I do have some experience with GABA-agonists and such, but that's no long term solution. Have you tried GABA in pure form and did you find it effective? As for the magnesium, I do take it occasionally (Mag Glycinate), might wanna take it everyday from now on now to see if it helps. Thanks!

@whodathunkit, interesting with the detox. I've looked into Iodine before too and it looks very promising. Read a lot of success stories from it. Would really like to do something like that as well. At least I think I need a proper examination as my stomach/gut have been troubling me quite much in the past. I know IBS/stomach ache could be a side effect of low potassium/folate insufficiency. I'm just not really sure what way to go. Maximum folate dose was 12 mg, thought that would have been enough but maybe it isn't. Its damn expensive to take that much Solgar pills as well :) Got potassium chloride on the way, think I'll try to up the dose quite a bit when it arrives. The gluconate pills isn't very easy on my stomach so that might be a part of the problem too.
 

whodathunkit

Senior Member
Messages
1,160
@kraken, the folate is HUGELY expensive. I won't even tell you how much I'm taking. :p But I'm doing it because I think it's going to make a difference in my uterine fibroids. I think it already has had some benefit. So I'm powering on through for another couple of months (unless I develop unpleasant sides, that is). We'll see where I land about the middle of April. At least I know the money drain is not forever.

Potassium pills are IMO very hard on the stomach. When I did Atkins years ago I was taking potassium pills during ketosis and I think that's one thing that helped wreck my gut.

Why don't you try just putting the contents of a potassium capsule into juice (or grinding up the tablet and putting into juice) until your powder arrives? I've had no stomach upset drinking the powder, and from my previous experience I was kind of worried about supplementing potassium. I now think the problem with the pills is that they're a very concentrated amount of potassium hitting a smaller surface area of your stomach. You swallow them, and they sit there dissolving and not diffusing through your stomach contents. But when the potassium is already mixed with liquid it's already diffused so it doesn't irritate the stomach lining.

Also, you might want to try to get your gut settled from taking potassium pills before you try to up your folate dosage again. Just to see if you can differentiate your gut problem between a something caused by the irritation of potassium or an actual folate deficiency. Could save you some money if it's just the potassium that's causing your symptoms.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@kraken, I've been using GABA powder for years, it was the first thing I found to calm my nervous system. I only recently read that it crosses the BBB only when BBB is leaky. So, mine must be leaky.

Re K+, I now take mine in footbaths. I never had problems w/ oral K+ Gluconate, but when I began adding some supps, incl Mg oil to footbaths, I switched to this route for K+. I do my GABA and all powdered supps this way, don't need any larger dose that by mouth. You could do this with crushed K+ tablets.

Re your gut, if you still eat any gluten, that's the place to start. Rather, to stop! Also dairy. Presumably you're no longer eating high glutamate. cheers, ahmo
 

Aerose91

Senior Member
Messages
1,400
Can M.E. cause diabetes/pre diabetes? My diet has always been phenominal, even years before ever getting M.E. but after my last period of overexertion i got hit immediatly with diabetes symptoms. i had blood tested in the hospital and they found i had hypoglycaemia (which i already knew) but no diabetes. However, i keep a glucose monitor and my glucose is constantly a bit high now, in the range of 110 fasting and 145 after eating- ive never been that high. i also lay in bed at night with terrible nerve pain in my legs and constant nausea and headache. These things all hit me immediatly and have not subsided. My brain function has also taken a huge hit.
Can pancreas or liver damage be the cause of this? Or mitochondria damage? I have done nothing to provoke this diet wise so am wondering what someone with diabetes and M.E. would think about the situation.
 
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62
@whodathunkit, yeah folate isn't cheap at all when trying to break free from what could be a paradoxical insufficiency. But I've read your earlier post, so I shouldn't complain really ;) Good advice regarding crushing up the tablets, think I'll try that! I've also tried to eat a small snack when taking the pills and it works a little better. Actually the stomach pain has mostly subsided now. But I've recuded the folate dose to around 4-6 mg / day so that might have been the factor. Still experiencing pretty pronounced burning sensations sporadically, just not the foots. Also some tingling. I dont have the slightest clue of what this could be..

@ahmo, nice to hear that its working for you. I've never tried pure GABA but now that you mentioned it I remember having some Picamilon at home which essentially is GABA bonded with Niacin. Supposedly this is meant to penetrate the BBB easier. Despite that, I didn't really find it to do much.

About the gut, your'e probably right about eliminating gluten. I've done the celiac test and it was negative, however, I experienced with gluten-free diet for some months when I tried the paleo/LCHF just out of curiosity and my stomach felt very good actually, less bloating/gas and pain. Just havn't had the time to engage in it when I started going out for lunch at work.