X-Men Mutant Protocols: A1298C Homozygous

[kel88]

Hmmm thats very interesting whe are very much the same.. Only my BHMT8 and vdr tag en bsm are homo...
And ive got All ahcy homo mutations only ive got no comt mutations...
May i ask what youre symptoms are? And wich supplements do you take? Are you very ill or not? And gut problems?

 

[garyfritz]

I'm very fortunate. My problems are pretty minor compared to lots of folks here, and I think I caught the problem before much serious damage happened.

I had very mild symptoms (occasional RLS) all my life. About 15+ yrs ago I started occasionally getting night-time twitches -- I'd wake in the night, agitated, with my arms/chest muscles twitching, couldn't go back to sleep for an hour or three. Drove me crazy. At first calcium/magnesium kept it under control, but over time it got worse and cal/mag quit working.

Then about 2 years ago, things got lots worse. I don't know if it was age (I'm 58 now), or reactions to depression after my divorce, or what, but it was no fun. I had RLS most of the time, I had skin-crawling and crawl-out-of-my-skin sensations, unpleasant tingling/energy in my legs, full-body flight-or-fight type agitation. That drove me pretty bonkers and made me very irritable. At night I would get an hour or two of sleep, then I would wake with twitching that escalated into full-body thrashing like a beached fish. For 3-5 hours every night I was tearing the bed apart, in a state of either extreme agitation or semi-awake nightmarish terrors. Full body "feel like $#|+" reactions most days, like a bad hangover. It *sucked*.

Fortunately, within about 6 months or so I stumbled onto B12. 500-1000mcg per day of methyl B12 (Readisorb spray) **totally** erased all symptoms. No RLS, no agitation, no muscle problems, no night-time horrors, sleeping soundly 7-8 hours every night. It was miraculous.

Apparently I continued to get worse, and after about another 6 months my symptoms started coming back. That's when I started doing more research, and I ended up here.

Now I'm taking more B12 (1.5-2.0 mg/day methyl and 4.5-6.0 mg/day adenosyl, net usable absorbed from transdermal oil), 1.25-1.50 mg/day methyl folate, and a bunch of other stuff. I tried l-carnitine fumarate but I didn't notice any difference.

But the B12, and to a lesser extent the methyl folate, is critical for me. I can feel VERY clearly when I start to run low -- the muscle-crawling, twitching, agitation, etc start up. I feel near-instant relief from those symptoms when I take more B12.

For a while I was using sublingual B12 -- I settled on Country Life 5mg. But there's very low effective absorption from sublinguals. I was taking 25-30mg per day and it wasn't keeping my symptoms under control. I would frequently have a bad night, and take 1 or 2 more 5mg CLs to try to get back to sleep. Then the next day I would feel weak, shaky, full-body ick.

I tried injections for a while and (for whatever reason) that didn't seem to work at all well for me. I tried injecting as much as 3mg/day of methyl B12, with very little effect. I couldn't discontinue the sublinguals, so I didn't see any point in poking myself every day.

Then I found out about the Aussie transdermal oils, and that's been a Godsend for me. The oils seem to deliver the B12 much more effectively than the sublinguals -- and I don't have to have a mouthful of pills all day long. It's not perfect but it's doing a really good job of keeping my symptoms at bay. I use 3-4x the "recommended normal" amount, but that's what it takes for me. It's costing me about $60/month but I'd pay that all day to get relief from my symptoms.

 

[kel88]

@garyfritz thanks again for youre post!
Ive got almost the same symptoms .. Ive got also RSL when i was pregnant .. Only lots of foodbads with high dose magnesium did help my problems..
My sickness did began with muscles twiching. I do have the. A lot of whole my body. Maybe the thing you describe like a fish i think that i got the same.. Only for my at night it is a sort of epilepsie. Only than " awake"... My body is in a sort shock. The onky thing that my helped was high dose B6./P5P (pyrroluri).

Only the bad thing is that ive got neuropathie from high dose P5P because i think that the CBS enzym works harder now.. Bit i cant without.

Every time that i takes methyl b12 my skin in itchy.. My histamine does rise i think.. I dont do so wel on methyl donors because the CBS and ACHY mutations maybe?
Its a shame because i also think that that solves my problems..
Question, methyl b12 injections.. What is the price for 1 ampul?
Here in holland they dont have the. So my doctor get them for me from italy. But for 1 big ampul 30ml i paid 140€ ( 160$ or something).. So very high price.
I also inject myself 1 time a week 10mg hydroxocobalamin..for ammonia .. I cant live without the b12 injections..

You are now 58? But since when did you become sick?
And the b12 oils they come from australia?
Does they sell them also at iherb or something?

Good to know that the solves youre symptoms! I also think b12 is the bigges problem in CFS/ME .. Only the tolorwtion is most of the time the big problem

 

[garyfritz]

My sickness did began with muscles twiching. I do have the. A lot of whole my body. Maybe the thing you describe like a fish i think that i got the same.. Only for my at night it is a sort of epilepsie. Only than " awake"... My body is in a sort shock.

Hi @kel88,

I'm not sure what you mean by "Only than 'awake', my body is in a sort shock," but other than that it sounds very similar. I suppose my really bad night-time thrashing (before starting B12) was almost like a seizure. I definitely didn't have full control of my muscles. But partly it was kind of like thrashing in a nightmare.

The onky thing that my helped was high dose B6./P5P (pyrroluri).

Hm. I didn't try B6 before I started B12. I'm taking a B complex now that includes 20mg P5P, but I'm not sure if that had any effect on the twitching problems -- they're mostly under control with the B12.

Every time that i takes methyl b12 my skin in itchy.. My histamine does rise i think.. I dont do so wel on methyl donors because the CBS and ACHY mutations maybe?

I'm not sure. I have CBS but not the A360A you have. I don't think I have ACHY, unless maybe 23andMe doesn't test for it.

Question, methyl b12 injections.. What is the price for 1 ampul?

I don't remember. I think it was about US $30-40 for 10ml, 10mg per ml. So for your 30ml ampul it would have been about $100. Was yours 10mg per ml?

You are now 58? But since when did you become sick?

Occasional RLS all my life, occasional night-time twitching starting about 15 years ago. About 2 years ago I got MUCH worse with more symptoms, much more severe and near-constant symptoms.

And the b12 oils they come from australia?
Does they sell them also at iherb or something?

Yes from Australia. You can order them at b12oils.com. They don't sell them anywhere else. Some people have found some similar products -- several are mentioned on the Transdermal Oils thread.

Some people have also started experimenting with crushing B12 tablets and mixing them into skin cream. (Injectable B12 would probably be better for that, since it wouldn't have the flavors / binders / etc that the pills have.)

Good luck!!

 

[kel88]

Thanks @garyfritz !!

I think that we got the same symptoms.
I also dont have control over my muscules at night.
My "parkinson" symptoms are gone woth high dose B6.
The neuropathie stayed. But i start since this weekend again with methyl b12 but now lower dose. 5000 iu tablet for under the tonque.
My neuropathie is much lesser now, wauw suck a release!

But when i try 10.000iu i get anxytie and itchy skin. So i dont handle a higer dose. But when i can ceep it like this im happy!

Thanks for youre info about the oils.
I ordered methyl b12 injections from Germany ( RX free).
First i will tey this or else i maybe will try the oils!

Thanks so much youre advice!!

 

[kel88]

Did any of you tryed oligomeric proanthocyanidins OPC for peroxynitrite? Can you use it also when you have homozygous CBS mutation? Ive got problems with sulfur/thiols!

But when i look for a OPC supplement then i read:

• 90% Polyphenols Including OPCs

So will that say that i cant use it?

 

[heyitisjustin]

@garyfritz thanks again for youre post!
My body is in a sort shock. The onky thing that my helped was high dose B6./P5P (pyrroluri).

How high in P5p dose did you go? I'm up to 100mg and I still don't have vivid dreams. My guess is I need to go higher.

 

[garyfritz]

Justin, what are you looking for from the P5P? Other than vivid dreams??

 

[heyitisjustin]

Justin, what are you looking for from the P5P? Other than vivid dreams??

My main problems are sleep and a general low level sick feeling. I have MAO-A, 1298C, VDR BSM, and several hetero methylation SNPs. I've had my problems seem to worsen with high histamine foods. My guess is that my problems are low methylation->high histamine->adrenaline->poor sleep/sickness.

I had a period of 2-3 weeks of pretty good sleep (1 or two wakeups, sleeping at least 4-5 hrs straight) that ended a couple of days ago. The last couple of days my sleep has reverted (though not all the way) to a sleep 2-3 hours then wake pattern.

I'm not sure what changed to cause this shift.
What I can think of:

Earlier:
Initially I had been swallowing a methlyation complex with b2/b6/TMG/mb12/methylfolate. I was taking many pills of that in order to absorb sufficient b12. I took this once in the morning with 4x the recommended dose. As a result I got huge doses of b2/b6/TMG/methylfolate and all in the morning.

I added sublingual mb12 to this and noticed a huge difference. I fairly quickly worked up to a large dose, I think near 30mg (is mg right?). My teeth went south within a month so I switched to with transdermal mb12 and methylfolate after finishing up the two b12 products.

At this point folate was mostly in the morning, probably around 800-1mg once or twice.

Recently:
I worked up to 4-5 sprays of mb12 (the product you use) . This seemed to be working (I think I had at least one of the good weeks on this protocol). Around this time I thought that some of the spacey/poor balance feelings (similar to low BS feelings) I had were due to mfolate deficiency so I started taking 3mg of mfolate 3-4 x a day.


I was guessing that the problem is some combination of:
1) Need more b6
2) Need more TMG (I took 100MG yesterday and had been taking 50mg before and the increase didn't help)
3) Need more b2
4) Can't take mfolate too late in the day.
5) I am eating differently (hummus?,more greens?)
6) Am taking too much mfolate

I've heard that vivid dreams were a sign that you were getting enough b6 for sleep purposes. I had a few vivid dreams earlier in my attempts, but none recently. Regarding vivid dreams, I don't particularly care either way I just want to sleep through the night and not feel sick.

 

[garyfritz]

Initially I had been swallowing a methlyation complex with b2/b6/TMG/mb12/methylfolate. I was taking many pills of that in order to absorb sufficient b12. ...
I added sublingual mb12 to this and noticed a huge difference. I fairly quickly worked up to a large dose, I think near 30mg (is mg right?). ...
I worked up to 4-5 sprays of mb12 (the product you use) .

OK, sounds like you figured out that swallowing B12 doesn't work well. Yes, 30mg of sublinguals sounds right. I was using 30-40mg of Country Life 5mg sublinguals before I found the oil. I'm taking about 1/10 as much B12 in the oil but it's working MUCH MUCH better than the sublinguals.

Wow, 4-5 squirts of the Aussie oil? You're using even more than I am, and that's saying something! Greg had told me I was using much more than anyone else he was aware of. Sounds like you've taken the lead.

BTW I found the pure-mb12 oil wasn't NEARLY as effective for me as the adenosyl/methyl blend. I really need that adenosylB12. I believe your SNPS are similar to mine, so you may get better results with the ad/me oil. You could try taking some adenosyl sublinguals (e.g. http://www.naturalhealthyconcepts.com/dibencozide-B12-sublingual-SN30-p-source-naturals.html) along with your methyl oil and see if it helps. I'd suggest somewhere between 1/2 and 1 tablet broken into quarters and taken throughout the day.

Around this time I thought that some of the spacey/poor balance feelings (similar to low BS feelings) I had were due to mfolate deficiency so I started taking 3mg of mfolate 3-4 x a day.

That's a LOT of folate, about 10x what I'm taking. I'm not sure how that plays with your issues and your high B12 dosage.

 

[heyitisjustin]

OK, sounds like you figured out that swallowing B12 doesn't work well. Yes, 30mg of sublinguals sounds right. I was using 30-40mg of Country Life 5mg sublinguals before I found the oil. I'm taking about 1/10 as much B12 in the oil but it's working MUCH MUCH better than the sublinguals.

Wow, 4-5 squirts of the Aussie oil? You're using even more than I am, and that's saying something! Greg had told me I was using much more than anyone else he was aware of. Sounds like you've taken the lead.

BTW I found the pure-mb12 oil wasn't NEARLY as effective for me as the adenosyl/methyl blend. I really need that adenosylB12. I believe your SNPS are similar to mine, so you may get better results with the ad/me oil. You could try taking some adenosyl sublinguals (e.g. http://www.naturalhealthyconcepts.com/dibencozide-B12-sublingual-SN30-p-source-naturals.html) along with your methyl oil and see if it helps. I'd suggest somewhere between 1/2 and 1 tablet broken into quarters and taken throughout the day.

I actually taking the admb12 blend. It's hard to tell if its working... I could've sworn it is. In the beginning I was feeling sleepy/spacey after each time. That's somewhat stopped. I assumed the sleepiness/spaciness was due to a folate deficiency. Will continue tweaking one variable at a time as best as I can.. perhaps the adeno doesn't sit well with me. I also forgot to mention I started LCF. However, I think I started it after the first bad night.

That's a LOT of folate, about 10x what I'm taking. I'm not sure how that plays with your issues and your high B12 dosage.

Its hard to know how much folate to take. I think this should be my primary target. I think folate might be stimulating for me. I know I am very sensitive to chocolate/caffeine. I might need to either reduce my folate or move it towards breakfast.

Thanks again Gary your feedback is always helpful/welcome.

 

[garyfritz]

Hope it helps! But we do definitely have some significant differences. Caffeine has absolutely no effect on me -- and I am known for the massive amounts of chocolate I eat.