Feeling awful six years into the protocol...advice?

[Idie]

I have been on the using Methyl for 6 years after a dreadful crash. Freddd helped me find the way out and I have been doing pretty good. A few ups and down along the way but generally ok. Many things healed but some lingering nerve damage. The last two months I have been chasing my tail and really can't seem to figure it out. It started with canker sores and a sore throat. I upped the frequency of my injections as I had gotten a little lax so thought that it might be low B12. It seemed to work as the canker sores and sore throat went away. But then they came back so I did some research and figured this sounded like epithial issues which pointed to folate deficiency so I upped my folate and that seemed to help a little and I was good for about 2 weeks. I have not changed anything after those adjustments and now my ears ache ring and my esophagus throbs and aches intensely and I feel chest pressure and my tongue has a burning sensation. It is a miserable experience. When I increase either B12 or folate (separately) the pain intensifies quickly in these areas usually within an hour, so which one is causing the problem? Even the addition of a sublingual can set if off.

Here is my protocol:

SQ Injections Methy B12 once daily (5-8 mg)
1600 mcg Folate daily
L-Carnitine
Adeno (twice per week)
B Complex
Vitamin D

I keep the ratio of B-12 to folate always at a level where I take more B12 than folate.

Is potassium involved? I don't have cramps in my legs, etc. I do feel a small bit of shortness of breath which I have had from time to time in past.

I sure could use some help so any and all advice is welcomed.

 

[Martial]

potassium and magnesium are important to keep up as well, methylation also places higher demand for other vitamins and nutrients and can cause other deficiencies. When those deficiencies set in place it also be a "methyl trap" in and of itself. Perhaps look into your diet and supplements and make sure you are covered on all your rda for other vitamins, minerals, and micro minerals.

 

[taniaaust1]

I dont think we should blame every issue we have on being a vitamin deficiency or issue.

If I was in the situation you are in right now with new symptoms starting up a couple of weeks after upping the folate (my ears ache ring and my esophagus throbs and aches intensely and I feel chest pressure and my tongue has a burning sensation), I'd put it back to what it was previously to see if that gets rid of those symptoms.

 

[Gondwanaland]

Could it be ammonia build up?

 

[Victronix]

Hi Idie,

Sorry to hear you're having this trouble -- I was not able to tolerate the mfolate so had to give it up after a year. I would increase it slightly and would do okay for 1-2 weeks, then would go down hill again, and that went on for a year. Finally I couldn't cope with the potassium needs anymore, which were huge. I would have to take a tray to bed at night with a banana and potassium gluconate mixture since I couldn't make it through the night without that.

I don't think potassium is involved. My guess would be that the folate apparently needs to continue to be increased, but that's just because that's what my situation was -- increase, then good for a couple of weeks, then rapidly worsen, then increase, good for a couple of weeks . . .

But if you were stable and this is just popping up, then maybe there is another factor. I know the winter makes everything worse for me, my TSH goes up, etc. In that case, could it be that you are just being exposed to more viruses and need more support (presumably folate)? I also take a small amount of zinc and extra C, and those seems to make a difference in my immunity.

I am just guessing! Hope things improve.

 

[Victronix]

Actually, potassium could help with pain and ear ringing if it does have a role. Doesn't hurt to try in once, anyway, see if it helps.
Interesting page on burning mouth (although this is a syndrome) -- http://en.wikipedia.org/wiki/Burning_mouth_syndrome#Theories

 

[Johnmac]

Ringing ears and mouth/tongue canker sores are classical mercury symptoms.

Doesn't mean that is the cause for you. But mercury poisoning or mercury elimination can both in my experience induce the above symptoms, among others.

You haven't been taking alpha lipoic acid by any chance?

 

[Idie]

Johnmac,

I have not been using alpha lipoic acid. BUT, I stopped everything and have just used the Methyl injections and the sore throat and canker sores are going away. I believe it was the combination of the Methylfolate that caused the bulk of the issues. I believe that my most important need is the Methylcobalamin b12. It seems that when I add other items, by Methyl B12 gets out of whack. Seems odd that I am mostly a Methyl B12 person--the other cofactors do not seem to do much.

 

[sheclimber]

@Idie - Do you think then that the sore throat and canker sores were symptoms of a methyl trap or an insufficiency of B12 relative to the amount of folate you were taking? (Forgive me if I have no idea what I'm taking about, I'm still just beginning to try and understand all this.) My canker sores ended up going away when I increased both MeB12 and folate, but I'm in a very different place than you having just started the protocol.

 

[Idie]

Sheclimber-----no worries about being a beginner. One thing I have learned from this protocol is that you have to be diligent and just when you think your symptoms might be one thing it is another. I thought I had this figured out (my post above) and yet I continue to have problems regulating. For example, yesterday, I took just folate in the morning to see what would happen and I had a pretty significant reaction----sinuses started draining and things seems so much brighter and I felt pretty good until later in the day then I got pretty short of breath. So I took more folate and symptoms alleviated. I don't have it figured out like I thought I did. So darn frustrating.

 

[Kati]

If you have tried a protocol for 6 years and it hasn't yielded desiring benefits, it is time to revisit why on earth you would keep on doing it and why you are spending money on supplements that clearly are not working for you.
Just my 2cents (and sense)

Best wishes.

 

[Idie]

Kati---read my first post on this thread and you will have your answer as to why....because it HAS worked for 6 years and worked quite well. The whole point is that this protocol requires tweaks occasionally and it can be frustrating.