• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

OCD and methylationi

Messages
84
I’ll start from the beginning. I am 35 and have had ocd/anxiety/depression my whole life. I can remember being a child and having those problems. Years ago I tried a ton of SSRI’s and therapy and they didn’t really help. I started experiencing fatigue to the point that I was falling asleep at stop lights so I got off the meds and took Metametrix Cardio Ion and later had saw Dr Calapai who did 20 pages of bloodwork. I have corrected a bunch of deficiencies and feel much better overall. The only thing that I still have is the Ocd/anxiety/depression.

In the last few months I have started getting panic attacks and crying for “no reason”. I decided to see a Psychiatrist who tried to put me on Pristiq/Deplin. I really didn’t want to go down that road again and opted not to take the Pristiq. I researched and started taking the Deplin 15mg for a couple weeks. In researching it, I found heard mthfr mutation mentioned. I remembered seeing that in my bloodwork. I read about methyl trapping/overmethylation and stopped the Deplin (although I wasn’t experiencing any adverse effects).

I am positive for 2 copies of the a1298c mutation. Homozygous for a1298c mutation and negative (normal) for the c677t mutation in the mthfr gene.

I spoke with someone very knowledgable on PhoenixRising and he helped steer me in the right direction with some things. I ordered a 23andme and just sent it off. It will be six weeks until I see the results. I live in NY which complicates things a bit. I had it mailed to me in NY and drove to CT to do the sample and mail it (20 minutes from my work).

I saw Dr Skowron http://www.naturopathicanswer.com/condi ... c-anxiety/ in CT. He looked at my 50 plus pages of bloodwork and recommeneded the following:
1)1500 mg GABA twice a day
2)Lavender 80mg twice a day
3)B complex http://www.metabolicmaintenance.com/pro ... s_minerals
With methylcobalamin 1000mcg and (6s)-5-methylfolate 800 mcg
4)Since I already have the Deplin, he asked me to cut into quarters and take 3.75mg a day.

The b12 is not a shot or sublingual. I do have shots at home but was urged to wait on those.

I have become more anxiouis on the GABA and he asked me to discontinue it. Hard to determine if it was the GABA or external events. I have heard that GABA doesn’t cross the Brain Blood Barrier.

My concerns are the following:
I am very concerned about methyl trapping/ overmethylation/ feeling worse. Is this course of action ok until I get the 23and me back? I have heard that a COMT mutation could give me problems if I start on that routine. I don’t know if that amount of L-5-methf in relation to b12 is a concern. I do have aluminum show up in my blood tests.

Some have said just to keep niacin on hand in case I run into problems. I want to be as proactive as I can be while still being safe and not causing any other problems.

Is there anyway to test for the other SNPS (COMT, CBS etc) that is quicker than the 6 weeks that 23andme will take? I do live in NYS, so I know that makes things tricky (worst state for this kind of stuff). Should I do a urine provoked metals test?

I could share/post/send (how?) my bloodwork if anyone wants to see it. Is there any way to maybe illuminate whether or not I MAY have COMT from anything else in my bloodwork? Does the fact that I was taking 15mg of Deplin every day for 2 weeks mean anything? I was taking shots of B12 at one point too…

I am also seeing things online about Dr Yasko and getting the BHMT pathway moving first. This is very confusing. There is talk of getting Lithium in balance and other things. This is very confusing.

Any thought anyone can give me on my suggested regimine
Or
How I should proceed
Or
A quicker test available in NYS for those SNPS other than MTHFR

Again, I have a TON of bloodwork (neurotransmitters, homocysteine, methionine etc) that I’d be willing to send.

I am going to attempt to attach it to this post but it might be too large. I was doing some supplementing so it is reflected in the testing. It is a large pdf - 50 or so pages and it wouldn't attach - let me know if you need to see it.

Thank you in advance
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I’ll start from the beginning. I am 35 and have had ocd/anxiety/depression my whole life. I can remember being a child and having those problems. Years ago I tried a ton of SSRI’s and therapy and they didn’t really help. I started experiencing fatigue to the point that I was falling asleep at stop lights so I got off the meds and took Metametrix Cardio Ion and later had saw Dr Calapai who did 20 pages of bloodwork. I have corrected a bunch of deficiencies and feel much better overall. The only thing that I still have is the Ocd/anxiety/depression.

In the last few months I have started getting panic attacks and crying for “no reason”. I decided to see a Psychiatrist who tried to put me on Pristiq/Deplin. I really didn’t want to go down that road again and opted not to take the Pristiq. I researched and started taking the Deplin 15mg for a couple weeks. In researching it, I found heard mthfr mutation mentioned. I remembered seeing that in my bloodwork. I read about methyl trapping/overmethylation and stopped the Deplin (although I wasn’t experiencing any adverse effects).

I am positive for 2 copies of the a1298c mutation. Homozygous for a1298c mutation and negative (normal) for the c677t mutation in the mthfr gene.

I spoke with someone very knowledgable on PhoenixRising and he helped steer me in the right direction with some things. I ordered a 23andme and just sent it off. It will be six weeks until I see the results. I live in NY which complicates things a bit. I had it mailed to me in NY and drove to CT to do the sample and mail it (20 minutes from my work).

I saw Dr Skowron http://www.naturopathicanswer.com/condi ... c-anxiety/ in CT. He looked at my 50 plus pages of bloodwork and recommeneded the following:
1)1500 mg GABA twice a day
2)Lavender 80mg twice a day
3)B complex http://www.metabolicmaintenance.com/pro ... s_minerals
With methylcobalamin 1000mcg and (6s)-5-methylfolate 800 mcg
4)Since I already have the Deplin, he asked me to cut into quarters and take 3.75mg a day.

The b12 is not a shot or sublingual. I do have shots at home but was urged to wait on those.

I have become more anxiouis on the GABA and he asked me to discontinue it. Hard to determine if it was the GABA or external events. I have heard that GABA doesn’t cross the Brain Blood Barrier.

My concerns are the following:
I am very concerned about methyl trapping/ overmethylation/ feeling worse. Is this course of action ok until I get the 23and me back? I have heard that a COMT mutation could give me problems if I start on that routine. I don’t know if that amount of L-5-methf in relation to b12 is a concern. I do have aluminum show up in my blood tests.

Some have said just to keep niacin on hand in case I run into problems. I want to be as proactive as I can be while still being safe and not causing any other problems.

Is there anyway to test for the other SNPS (COMT, CBS etc) that is quicker than the 6 weeks that 23andme will take? I do live in NYS, so I know that makes things tricky (worst state for this kind of stuff). Should I do a urine provoked metals test?

I could share/post/send (how?) my bloodwork if anyone wants to see it. Is there any way to maybe illuminate whether or not I MAY have COMT from anything else in my bloodwork? Does the fact that I was taking 15mg of Deplin every day for 2 weeks mean anything? I was taking shots of B12 at one point too…

I am also seeing things online about Dr Yasko and getting the BHMT pathway moving first. This is very confusing. There is talk of getting Lithium in balance and other things. This is very confusing.

Any thought anyone can give me on my suggested regimine
Or
How I should proceed
Or
A quicker test available in NYS for those SNPS other than MTHFR

Again, I have a TON of bloodwork (neurotransmitters, homocysteine, methionine etc) that I’d be willing to send.

I am going to attempt to attach it to this post but it might be too large. I was doing some supplementing so it is reflected in the testing. It is a large pdf - 50 or so pages and it wouldn't attach - let me know if you need to see it.

Thank you in advance

Hi Anxiousguy,

That sounds like a very familiar problem.
http://forums.phoenixrising.me/inde...uartet-and-other-nutrients.27482/#post-422662
Might be a good place to start reading. With the symptoms by nutrient posts note down ALL the symptoms you have by nutrient categories as given. Make sure to note down the categories too .Those can tell a lot of what is going on.

Also, note down all your childhood symptoms and teen symptoms from the same lists. Then we could have some better ideas of what could be going on. That can give a clearer view for many of us than 50 pages of blood test reports and results. After seeing the symptoms maybe then some of us might be able to ask for specific test results to further clarify. The limits of post size are something like 10k or 15k.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
@anxiousguy ,

Did you ever start to feel better when you were taking the Deplin? Homozygous for MTHFR A1298C - sounds like Deplin is one of your best bets. I would thing the methylcobalamin 1000mcg and niacin would protect you from methyltrap if you started to feel worse - but you are the only one who can decide what level of risk you're comfortable with.

How much B6 (pyridoxine hydrochloride) or P5P (pyridoxine-5-phosphate) is in that B complex?

In your lab results, did they test serum amino acids? If so, can you tell me what your results and the reference ranges were for tryptophan and tyrosine? If you could load a page or two of amino acid results, that would be more helpful.

Have you ever supplemented with glutamine? I'm not recommending it, just asking. There's a GABA-glutamine balance that seemed like it got worse when you took GABA, so I was wondering. Oh, but I do have a sample packet of glutamine - and I'm certainly not going to use it. Email me if you want me to send it to you. Again, about the risks you are willing to take - it's your call.

I don't think anything is faster than the 6 weeks. There's a lot of studying to do to get yourself ready for the results, though...I made a "mutation map" of guesses at my mutations, too...reading about what each causes and knowing myself. It helped me think through the connections. I like the visuals on the AMRI Heartfixer website - they were also helpful for me in understanding the basics, although I think now that some of that info (re: CBS anyway) is not quite right.
 
Messages
84
@Freddd
Thanks

Hard to make some distinctions with symptoms.

I had reduced libido and inability to orgasm on meds. I don't have those probs since I got off meds. I do have reduced libido, but I moved out of my girlfriends and depression/anxiety I am sure effect that.

I do have low total testosterone and my free is probably lower than it should be for my age although it is in range.

I am depressed, anxious, irritable and have OCD.

Thanks

@Critterina

I was doing ok on the Deplin. I think maybe starting to do better. I am just concerned of methyltrapping/overmeth if I have comt. Hard to tell for sure about whether I am feeling worse/better due to circumstances or supplements sometimes.

Here is the B complex label
http://www.metabolicmaintenance.com/product/B-Complex/vitamins_minerals
The B6 is 55mg. I know my B6 is high now due to supplementing in the spring (45.5 mg).

I am attaching some test results. I don't think that I have ever supplemented with glutamine.

The b complex is not sublingual and not a shot obviously, so is there an advantage / detriment to that?

Thanks
 

Attachments

  • Medical.pdf
    212 KB · Views: 7

PennyIA

Senior Member
Messages
728
Location
Iowa
I have double A1298c as well as a host of other defects. And my son wth OCD is also double A1298c (still waiting to retest my ten year old with high anxiety).

I just wanted to point out that until I got on methylfolate and eliminated all folic acid AND sublingual methylcobalamin, I didn't get any relief from my symptoms. I did have trouble with just taking b complex tablets that contained methylcobalamin, had minor improvement once I started sublinguals, but no significant improvements until I also got suffiicent methylfolate and eliminated folic acid.

While I've twice felt the desire/need for niacin? The first time I had bad side effects for about six hours, but nothing on hand... the second time I had it on hand, but waited a little while - it passed within 30 minutes on it's own. My integrative MD doctor encourages more rapid and higher doses of methylfolate than is normally recommended... so the potential of overmethylation is certainly there, but it really hasn't been a big issue for me.

Just my experience/opinion of course.
 
Messages
84
Thanks @PennyIA

I was under the impression that you NEEDED methylcobalamin when supplementing with methylfolate. I wonder how you had problems taking b complex with methylcobalamin (I though almost none of it absorbed).

What were the side effects that you had for 6 hours? Mental? Flu like?
 

adreno

PR activist
Messages
4,841
Regarding B12 and methyl trap, I would take at least half the amount of the folate you're taking. So if you're taking around 4mg of folate, I would be sure to take 2mg sublingual B12. Nothing is set in stone, but I believe that should keep you out of the methyl trap.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Thanks @PennyIA

I was under the impression that you NEEDED methylcobalamin when supplementing with methylfolate. I wonder how you had problems taking b complex with methylcobalamin (I though almost none of it absorbed).

What were the side effects that you had for 6 hours? Mental? Flu like?

Sorry - my post should have stated that mehtylcobalamin on it's own was insufficient to impove me symptoms (I started it several years ago - mild improvements, but nowhere near helpful enough).

It was only after starting methylfolate, elminiating folic acid - and reducing my methylfolate to a much lower dose than before ....
so not eliminating it, but rather dropping it down to a single sublingual a day (I had been up to four x 5 mg per day).

Every single b complex either led me to further crashes (who knows if the crashes were just going to happen anyway or due to the buildup of the b complex... they were not immediate, not something that I could pin point to a direct source)... OR I would have NO improvments in symptoms.

Right now I'm taking 15 mg of methylfolate (much higher than normally recommended, but it's the point at which I see my greatest improvements) and 5 mg of sublingual methylcobalamin. (I also take NAC and ALA, vitamin D drops and Vitamin C as well as am just starting Armour for thyroid).