I am Really Anxious about Methylation.

[Misfit Toy]

Okay, so I have put off doing this for a long time and as many know started doing it a few weeks ago just by taking what I thought was a B12 vitamin. Well, it had folate in it.

I realized it brought me back to life, but as time went on, I became manic like with mood swings. I cursed like a sailor...music came back on in my household.

I have posted about it on here and got some good advice, etc.

Here's my problem. I am not cognitively capable of learning all of this. The SNP's, the everything. I feel completely overwhelmed by it.

I received my HydroxyB12 today...doing it separately, like was suggested to me and I took it. I felt clear this AM when I took it. It was like a miracle. As the day has worn on, I am exhausted and now anxious. I am taking a small dose. I want to take more...to revive me.

My anxiety stems from physiological stuff and the fact that I really have no idea how much to take. I don't like messing around or guessing because that puts me in anxiety mode. Why? I have noticed that overmethylating can make me so sick. I develop intense pain.

Here are my thoughts. I am not like I said, as cognitively with it as many on here. I don't understand a lot of this. I am thinking I may need a specialist, or someone to consult.

What are your thoughts on this? They may not know exact amounts of what I need either. For example, a guy I consulted with 2 years ago said I needed 1,000 mcg a day. That is pretty high.

I am just so nervous I will make a mistake that could put me in worse pain or leaving me feeling nuts, as many on here sometimes feel.

I took about 125 mcg today. I am wondering if I should take it tomorrow, or skip it. I just don't know and I know no one here can be my doctor or hold my hand.

The closest person to me is Sean Bean. He is from the MTHFR support. he charges $350 an hour. I can't afford that. It's just too much. Plus, I know people who go to him and are dissatisfied. He doesn't get back to people when they have a question and he is autistic or has aspergers and a lot of people say he is a little bit cold.

I am not sure of whether to plow through with this on my own, or find someone..but the cost of these consults and Sean who is just a nutritionist, it's kind of crazy expensive.

I remember years ago taking B12 and getting B12 shots every week, but I am not 20 anymore and things are not the same. I could handle them then...I was young into this disease. My cognitive abilities for years were great...but not anymore. I react to things differently now.

I also believe that since I had my surgery in January, I totally depleted B12. I know that is the case. That was major stress and 3 hours of anesthesia.

 

[minkeygirl]

I have an NP Who does methylation. First appt www &250/hr.bfollow ups $125/ half hour. She skypes

I found her by googling methylation doc and my city. Or integrative. Or try autism and methylation doc

 

[AndyPandy]

I feel for you @Misfit Toy. With methylation, I have been stumbling along going on instinct and what I have read on PR.

That said, I don't feel I am up to understanding or tolerating the complexities of some of the protocols on PR.

As you know I am using the slow and low approach. Have you read Caledonia's guide to this? It helped me to keep things simple for now.

She also talks about halting methylation with niacin. I bought some before I started and it gives me a level of comfort to know I have it there if I need it. I haven't needed it yet.

I am managing to keep the agitation down with a low dose of HB12. I think I would be quite agitated on a higher dose. My ME/CFS specialist recommended HB12 rather than MB12 as she says it is better tolerated. I have to be careful as I am MAO++. Yasko's chart also recommends HB12 for me due to other snps.

The other thing I am doing to keep any agitation down is taking magnesium. I am taking 125mg twice a day. It really helps me. I also think B2 helps.

Have you considered splitting your low dose and taking it two or three times a day? That way you might even out your response?

For me, the pain is worse when I add in the Methylfolate. I don't take anything for pain. I struggle with half a panadol!

As you know I have an appointment with an MTHFR specialist. I made it because I am wary of shooting in the dark with this. It is pricey - around the same as you have been quoted. I will share what I find out. I hope you can find an affordable option.

Best wishes, Andy

 

[Critterina]

What are your thoughts on this? They may not know exact amounts of what I need either. For example, a guy I consulted with 2 years ago said I needed 1,000 mcg a day. That is pretty high.

I am just so nervous I will make a mistake that could put me in worse pain or leaving me feeling nuts, as many on here sometimes feel.

I took about 125 mcg today. I am wondering if I should take it tomorrow, or skip it. I just don't know and I know no one here can be my doctor or hold my hand.

As long as you are willing to listen to 'my thoughts' on this, and not take them as having any authority, I'll share:

It seems like you did OK on 125 mg, although you did wane in the afternoon. Is 125 mcg what you took over the whole day? I'll assume it is.

The first question is: should you skip a day? My response is: Why not? "Go slow" is usually good advice. That way you will also be cleared out a bit so that you can pay good attention to what you do the next day.

The second question is: what do you do the next day? My suggestions is that you take your 125 mcg and spread it out over the day in a deliberate way. Maybe 50-50-25. Maybe something else. Every 8 hours? Every 6 hours? You decide. Just pay really good attention to how that works for you.

You are right: Nobody here is going to be your doctor. And, most doctors aren't going to realize how sensitive you are. Because your cognition is affected, it will be important to write down all that you can:

• what your plan is for the day,
• what you actually do,
• and as often as you can, write down how you are feeling and what time it is when you start writing:
  • before you take it,
  • a little while (30-60 minutes) after you take it,
  • a couple of hours later
  • Activities, usual or unusual events, moods, foods, whatever you think might help you remember that day

Then you need to plan the following day: do you skip every other day? do you repeat what you just did? do you spread it out differently (for example, 25-25-25-25-25 every 4 hours)? These are your decisions.

My suggestions:
1. Read all your notes at the end of each day, and at the end of skipped days, before you plan the next day.
2. Try to do the same thing for several days, so that you get enough sets of data about how you react to be confident that you really know how you react. When you have that understood, you may have a good idea of what to try next and how it will affect you.
3. Make little changes, not big ones. (for example, a small increase might be to 150 mcg, not to 250 mcg)
4. If something else goes on in your life, (a cold virus, a stress in the family, a heat wave), take into account that you may be reacting differently, and that it might not be just your supplements. Try not to make a change to your supplement routine during that time because it will be hard to tell what is causing what.

OK, so, probably not a lot of help, but when I was sick and my brain wasn't working well, these were the types of things that helped me. Fortunately I had a doctor who would send me home with six different experiments to make with the different medicines he gave me - dose escalation, timing, combinations. One of the drugs really depressed me, starting just after I first took it. It was so immediate that I actually thought it started BEFORE I took the new drug. It was only because I was writing things down that I could go back and see that it was AFTER the first dose.

I wish you much success, quickly won.
Critterina

 

[Misfit Toy]

@AndyPandy -yes...I have been reading it. See how you say MAO++...I don't even know what this means and even if you explained it, I could not retain it.

I am able to get out everyday almost. Drive, take out my trash, go to PT, but my brain is not working due to so much brain fog...so that is where my illness lies...cognitive issues.

Here's the funny thing...if I split my dose..it would be a crumb. The hyroxy only came in 1,000 mcg. So cutting that is so well....impossible. I can cut it in half and everything after that becomes really hard. I took such a tiny crumb this AM and hey....clarity came on. Maybe cutting that crumb even more and taking it later in the day would work.

I have read how to cut things down, etc...but again, mentally I can't retain it. Or, figure it out. I can't even tell you how sad that makes me. I like to think of myself as smart.

I have not been working and have to buy new tires for my CRV-Honda on Monday for it to pass inspection and then I went to the dentist and found out I have a cavity and a cracked cap...(that will be expensive)...scream! So, that is where my money is going now.

At some point I will have to pay the money and just do it. Hire a methylation consult.

Also, you have pain, Andy...right?

I guess the methylfolate causes pain and B12 may help it? There is a lot to this I need to learn. Like what does folate do and what does B12 do? I read that hydroxy detoxes the brain of metals.

I don't really need too much folate as my SNP...(I guess that's what it is)...said that it's okay. I have sulfur detox issues and ammonia. And B12 is low, but my folate looked okay. When I take folate..it will seriously be like Sushi had said...dipping a toothpick into the pill and taking hardly....any.

Excuse my inability to know a lot here...

Patient in training. This is actually a science unto itself when you think about it!

 

[Misfit Toy]

@Critterina -that's a very well written idea...and thank you. It actually is some advice and some good advice. I will write it down...albeit, I am beat. I hate writing things down, but with this I have to.

The idea you and Andy have for me taking that 125 throughout the day spaced out is a good one. Will do and will skip tomorrow.

I appreciate this. Yes, the cognitive issues suck. I have said this before but it amazes me how I could sit through a class in college and binge study for a test all night and get A's. How.....did.....I......ever.....do.....that? Envious of my former early CFS days. Build up of toxins, I suppose.

 

[Critterina]

@Misfit Toy,

You are so right in so many things you said. This is like a graduate course where you've been drugged and can't follow what the teacher says. You might be right about the build-up of toxins, or you may be lacking some essential factor or cofactor...it's really pretty impossible to tell. Aspartame was a killer for my brain power, even before I got sick. But many of my friends, even my real estate agent, were really scared because I was SO out of it.

Seeing you have the trouble of measuring the low dosage, I looked for another product that might help and found this:
http://www.professionalsupplementcenter.com/PharmaxVitaminB12CWS.htm
I can't recommend this product or supplier; I just noted that one drop was 10 mcg, an amount that you could easily tailor to your needs. It doesn't cost much. And I noticed they did sell reputable brands with which I'm familiar.

 

[Misfit Toy]

@Critterina -okay...want to see how brain dead I am? I see nowhere it being 10 mcg. If it was...that would be stellar. I don't see it on the site as being 10 mcg. It would make my life a whole lot easier and I could easily carry it around.

Yes. This is a graduate course. It has some sort of math to it...like calculus and then chemistry and then......biology and then...you need to know how to read it to boot!

I try not to drink aspartame. I have no idea why my brain became fried. I remember it happening when my hormones tanked in 2008. That was when it started. And adrenals kind of tanked.

I am glad you are better. My friends always know when I am bad because I sound monotone and there is no inflection in my voice. None.

Wait..perhaps 50 ug per 5 drops=10 mcg one drop?

At PT yesterday, they asked for trivia...what is the 50th state in the US? I totally forgot it was Hawaii....sigh.

 

[Critterina]

@Critterina 50 ug per 5 drops=10 mcg one drop?

Not as brain dead as you claim!

 

[sscobalt93]

Are you only working on methylation right now? I think another good thing to do would be to start getting on a detox regimen. Once I started detoxing everything started to improve. If you have access to a sauna I highly recommend it and so does Dr. Ben Lynch. This was my awakening to getting better. IMO I think being overloaded with toxins makes methylation issues hard. Once you reduce the burden you may be able to tolerate supplements better. I have now added in high doses of Milk Thistle(6-900mg) and I sleep so much better and I have better BM's(sorry for the TMI). So I would recommend trying some of those things while working on methylation. It may help.

 

[dannybex]

I wouldn't go with Sean @Misfit Toy. He just got into this about 4-5 years ago, doesn't have enough experience IMO, especially if he's charging $350/hour. That's insane.

There are more people here on PR that probably know more than he does, and can explain it in user-friendly terms, like @caledonia for one. It definitely can be overwhelming, and some say to fix mitochondrial problems before tackling methylation.

And just in general, Ben Lynch has talked a lot about not taking things every single day if one has a negative reaction, especially methylfolate.

 

[Misfit Toy]

@dannybex -I know. I was hoping to find someone else in my area, but when I went on MTHFR support, Sean's name came right up and I felt like....oh no. He has no certifications, at least I don't think. I hear he is incredibly intelligent, but for not having any kind of ND or doctorate, why the $350?

That's too costly. I don't even pay my regular docs that out of pocket, not that I have had to pay anyone that in a long time, but I used to go to an MD who was a GYN and holistic minded and she did a lot of the detox stuff and she was $250 as an MD and she would spend a lot of time with me and call me, if I needed a question answered. He won't do that and he doesn't respond to people via email even though he says he will. I talked to him on the phone last year to ask questions before I made an appointment, but people warned me..."If you are sick from something like a supplement, be warned, he could take weeks to get back to you, or you may have to make an appointment to see him to get your answer." Not good.

Thank you for your honest opinion.

 

[dannybex]

His 'educational' background just doesn't cut it for me anyway. Mostly seems like schooling for chiropractic and hypnosis, NLP, etc.. And then it looks like he took some courses from some place called 'The World Institute of Integrative Health Science', which if you peek behind the curtain looks more like some outfit set up by a husband and wife team, who haven't updated their website in 5 years.

I thought this was kind of funny:

HUNA. Secrets of the Ancient Hawaiians Revealed!

(describes the bizarre course, then…)

"Tuition is just $345.00. if you order before December 10th, 2010. Yo price is just $295.00 and includes Hawaiian Sea Salt for Clearing and for blessing."

Wow, it includes Hawaiian Sea Salt -- that must cost about 75 cents? But "yo" price is just $295.

And then at the bottom of the page: "You may call Dr. Frederick directly at 717-560-5609. Please leave a couple of times for him to get back to you. He always answers your call personally."

!!!

http://www.worldinst.com/educational-purchases/

 

[Valentijn]

@Misfit Toy - I think that small doses twice per day would be a good thing to try next. Either the current dose at each time, or half at each time.

But taking hydroxoB12 later in the day can be a little overstimulating when I'm ready to wind down and go to sleep. Hence my latest dose was usually around 2-4pm.

 

[anne_likes_red]

HUNA. Secrets of the Ancient Hawaiians Revealed!

(describes the bizarre course, then…)

"Tuition is just $345.00. if you order before December 10th, 2010. Yo price is just $295.00 and includes Hawaiian Sea Salt for Clearing and for blessing."

Wow, it includes Hawaiian Sea Salt -- that must cost about 75 cents? But "yo" price is just $295.

And then at the bottom of the page: "You may call Dr. Frederick directly at 717-560-5609. Please leave a couple of times for him to get back to you. He always answers your call personally."

!!!

That's pure gold.

 

[Misfit Toy]

@dannybex -thank you for such a laugh. OMG. Okay, then...."Yo price"...LOL.....ahh.....some of these people are such charlatans.

 

[caledonia]

As long as you are willing to listen to 'my thoughts' on this, and not take them as having any authority, I'll share:

It seems like you did OK on 125 mg, although you did wane in the afternoon. Is 125 mcg what you took over the whole day? I'll assume it is.

The first question is: should you skip a day? My response is: Why not? "Go slow" is usually good advice. That way you will also be cleared out a bit so that you can pay good attention to what you do the next day.

The second question is: what do you do the next day? My suggestions is that you take your 125 mcg and spread it out over the day in a deliberate way. Maybe 50-50-25. Maybe something else. Every 8 hours? Every 6 hours? You decide. Just pay really good attention to how that works for you.

You are right: Nobody here is going to be your doctor. And, most doctors aren't going to realize how sensitive you are. Because your cognition is affected, it will be important to write down all that you can:

• what your plan is for the day,
• what you actually do,
• and as often as you can, write down how you are feeling and what time it is when you start writing:
  • before you take it,
  • a little while (30-60 minutes) after you take it,
  • a couple of hours later
  • Activities, usual or unusual events, moods, foods, whatever you think might help you remember that day

Then you need to plan the following day: do you skip every other day? do you repeat what you just did? do you spread it out differently (for example, 25-25-25-25-25 every 4 hours)? These are your decisions.

My suggestions:
1. Read all your notes at the end of each day, and at the end of skipped days, before you plan the next day.
2. Try to do the same thing for several days, so that you get enough sets of data about how you react to be confident that you really know how you react. When you have that understood, you may have a good idea of what to try next and how it will affect you.
3. Make little changes, not big ones. (for example, a small increase might be to 150 mcg, not to 250 mcg)
4. If something else goes on in your life, (a cold virus, a stress in the family, a heat wave), take into account that you may be reacting differently, and that it might not be just your supplements. Try not to make a change to your supplement routine during that time because it will be hard to tell what is causing what.

OK, so, probably not a lot of help, but when I was sick and my brain wasn't working well, these were the types of things that helped me. Fortunately I had a doctor who would send me home with six different experiments to make with the different medicines he gave me - dose escalation, timing, combinations. One of the drugs really depressed me, starting just after I first took it. It was so immediate that I actually thought it started BEFORE I took the new drug. It was only because I was writing things down that I could go back and see that it was AFTER the first dose.

I wish you much success, quickly won.
Critterina

I would suggest exactly what Critterina suggests -

Since you had a nice response, but it wore off in a few hours, it seems like you would need more frequent dosing.

So take the 125mcg, and split it into say, four doses. I just take mine at breakfast, lunch, supper and bedtime to make it easy to remember when to take stuff.

As you're saying, it may be too hard to split the 1000mcg pill that small. Yasko makes a liquid sublingual hydroxy which is 1000mcg per drop, but it can be diluted down as small as 1mcg if needed.

Take notes in a symptom journal as to what you're dosing and when, and any symptoms good or bad. I use Microsoft Word's calendar template. I just write my notes on the calendar and store each month's file in a folder on my computer. That way I can go back over time and spot any trends and see what was doing what.