15 yo Daughter is COMT V158M+/+ and COMT H62H+/+ suffering from severe OCD and anxiety

[sregan]

She has been getting worse and worse. The last 2 weeks she can barely function.

She is also MAO A R297R +/+, MTRR A66G +/+ , MTRR A664A +/+ and MTR A2756G +/-. The other notables are VDR Taq +/- and MTHFR A1298C +/-

Reading the Heartfixer I might assume that she's overmethylated and give her some niacinamide?

The MTRRs and MTR seem to indicate she might likely be low in B12 though? Would be ok to give her Hydroxycobalalim?

 

[Esther12]

I've really got no idea what any of that means I'm afraid, but just wanted to send you and your daughter good wishes.

Personally, I'd be cautious about trying different drugs and supplements where the evidence is still uncertain as people can end up doing more harm than good, or just making life more of a chore with pill taking. I hope that things start to improve for her soon.

 

[drob31]

I have nearly the exact same mutations:

COMT V158M ++
COMT H62H ++
MAO-A R297R ++
Also compound hetero MTHFR (c677t, and A1298C)

I'm very OCD, but it's actually a good thing because if I've been known to read an entire book in one sitting, or keep working on a problem like a programming issue until I figure it out, whether that takes 10 minutes or 27 hours. It gives you the ability to put your mind to something and absolutely not stop until you reach your goal. I had the anxiety as well, but that seems to get better when you're on a better diet.

As far as fixing it, maybe look into Freddd's methylation protocol.

 

[Valentijn]

@sregan - COMT H62H is completely irrelevant. Everyone who has COMT V158M also has COMT H62H, hence it has no additional impact at all.

MTRR A66G +/+ indicates that methylB12 is being recycled at about 30% of the normal rate. Any form of B12 can help speed that up, but many people tolerate hydroxoB12 much better than methylB12. By using an inactive form, it allows the body to convert and use it at a more natural speed, instead of trying to force things.

 

[barbc56]

@sregan

Has your daughter had a workup by a psychiatrist including a complete physical workup?

I agree with the poster above. These tests are not necessarily valid.

There are excellent medications for both these disorders. There are no guarantees but I think you would have a better chance going this route.

Best wishes.

Barb

 

[sregan]

@Valentijn The research I did last night found some helpful things. From my reading it seemed we needed to BOOST COMT and reduce dopamine (supplements and diet restrictions). Also she probably has a bunch of extra methyl groups floating around so I wanted to try to mop those up assuming they were adding to the anxiety.

Yesterday morning she had aboout 2/3 of a .5 klonopin. I couldn't stand to see her suffer. It calmed her down but didn't stop the obsessive thoughts.

After school I had her take a 500mg of niacinamide which I hoped would mop up the methyl groups.

When I got home around 7pm I gave her some Hydroxy B12, which is actually supposed to USE methyl groups when it's converted to the needed MB12. Although slower since she has MTRR++. Since she is MTR +- better to giver her smaller doses over a period of time (I think). She seemed to improve almost immediately after giving her this.

Also gave her some Lithium. Apparently this is a Yasko thing and this Doctor (link below) says it most likely boosts COMT which is slow in COMT++ folks
MTHFR+ and COMT

Also gave her 500mg of tryptophan and about 20mg of sublingual p5p to boost tryptophan as serotonin is supposed to somehow compete with dopamine and will drive down dopamine. SSRI's are the forefront of most OCD treatment I've read. I'd rather not go the drug route if so it would see that a Dopamine antagonist (anti-psychotic) would be more in order than a SSRI.

Within about 30 minutes she was almost back to her normal cheerful talkative self. The next 2-3 hours were very good to see her nearly normal.

She woke this morning with a great deal of anxiety and gave her a round of the supplements again. And 1/3 of the klonopin. Being familiar with klonopin I assume she's having a withdrawl. For me if I don't take every 12 hours I'll feel a withdrawl effect.

We're going to maybe add Inositol, taurine and magnesium glycinate probably at bedtime.

Also gonna have her avoid supplements and foods high in tyrosine and anything that might be a COMT inhibitor

COMT Inhibitor

• EGCG: 0.2uM
• Quercetin: 0.48uM or 0.9uM
• Catechin: 1.64uM
• Epicatechin: 1.96uM
• Fisetin: 3.3uM
• Luteolin

Camellia Sinensis [Green Tea, Black Tea, White Tea, Oolong Tea] (Catechin, Epicatechin)
Olea Europaea [Olive Oil] (Hydroxytyrosol)
Paeonia Suffruticosa [Cortex Moutan, Mudanpi, Peony] (Paeonol)
Piper Longum/Nigrum [Long Pepper/Black Pepper] (Piperine)
Uncaria Tomentosa [Cat's Claw] (Catechin, Epicatechin)

Caffeic Acid, Chlorogenic Acid, and Caffeic Acid Phenethyl Ester. These inhibit some DNA functions, too.

1. Why Use Herbs to Lower Dopamine Levels?
◦ When dopamine levels are elevated or lowered because of temporary circumstances, it is normal. Usually, the levels will even out as the circumstance abates, but when high dopamine levels persist, it can cause the brain to perceive reality in a distorted realm. This may cause increased aggression and risk taking. In this circumstance, using herbs that lower the dopamine levels, may be a safer alternative.


2. Raise Serotonin, Lower Dopamine
◦ Herbs that raise serotonin levels, and thereby lower dopamine levels, can be found at organic health food stores, and some can be grown in your own garden.
Oat straw, which is found in oatmeal, can also be used as a tea.
Root of the burdock, a type of thistle, can be used in a tea, or the stalk of the plant can be cooked and eaten.
The dandelion can be used in tea, or cooked in food. It gives a general feeling of well being that will raise serotonin levels and lower dopamine levels.
Ginseng is sold by the root, and can be used in a drink such as tea, or added to food as a spice.
Black cohosh is a plant that grows in the eastern and central parts of the United States. This herb can be used in a tea or in food preparation.




Found Some Articles:
http://www.abihm.org/understand-comt-and-change-your-life

 

[sregan]

@sregan

Has your daughter had a workup by a psychiatrist including a complete physical workup?

I agree with the poster above. These tests are not necessarily valid.

There are excellent medications for both these disorders. There are no guarantees but I think you would have a better chance going this route.

Best wishes.

Barb

@barbc56 We have an appointment with a recommended therapist but can't get in until the 20th of this month. I'd much much rather not go the psychiatric/drug route if it can be avoided. She had some very encouraging response to the supplements I have her yesterday. Very glad I had her genetics (as well as my wife and other 2 children and myself) done. At $99 per it was too good to pass up.

 

[justy]

Has she, or your wife been tested for bacterial infections. I have a lot of anxiety issues and issues with minor OCD and have just found out I have Bartonella, CPN and possible Lyme. I was told for years that I had psych problems when I knew it was something causing it.

So glad to see the things you tried helped her. I really understand how awful severe anxiety and OCD are. I do send my best wishes to all of you.

Justy

 

[sregan]

Wanted to update: My daughter is doing much much better now. She was having much more anxiety/ocd in the mornings but been feeling much better in the evening on the supplements I was giving her. I thought she might be having an AM cortisol response due to the stress. I started giving her L-Glutamine at bedtime and in the morning to eat up the extra (supposed) cortisol. And it has worked beautifully. After about 4 days of taking ONLY L-Glutamine she is doing very well. Yesterday we added back 5mg Lithium in the morning and evening to hopefully boost her COMT.

I'm so grateful for this. She was not well at all. We have her an appointment with a therapist and I have found some really good articles about techniques for stopping obsessive thoughts.

 

[DeGenesis]

You are really on top of things. I would caution about changing too many things at once, but once again you seem like you're on your game. I had to take an SSRI for my childhood (more like 4 - 22, but it got a LOT better as the years progressed) OCD, but I think that it is great if your daughter doesn't have to.

A good therapist is key for OCD in my opinion because your daughter can take the therapist in circles and appointments can end up being a waste of time. In my opinion the best therapist will stick a spoke in the OCD wheel fairly quickly.

Now that I am much older I can imagine how hard it is on a parent when their child has severe OCD, but it seems like you are doing an outstanding job. Mother's really will do anything for their kids! Feel free to PM if you have any questions about OCD. I'm not an expert by any means but I have carried the diagnosis actively from the age of 7 - 22. I am now almost completely OCD free.

 

[sregan]

@DeGenesis Thank you for the reply... since this was such an acute thing I was hoping the anxiety was driving the underlying OCD. She had been going through a particularly negative couple of months and seemed to lead into this. The therapist we have been referred to is supposed to be an expert on OCD. I think it's always something she's had and I had some as a child and probably still affects me.

BTW in my profile photo I'm the one on the left.

 

[redheadkelly]

Thank you for posting this. I just got my 23andme results today & found that I have similar SNPs. I have known about MTHFR for several years & been experimenting. This has helped greatly, but I was starting to suspect that the 'typical' MTHFR protocol was not what I needed. I felt the opposite. Ha.

It's nice to see how you worked this out for your daughter & helped me understand the direction I need to come at it, too.

Glad to see that you have made progress!

 

[sregan]

Update: daughter saw a therapist yesterday. Will do psychotherapy with her and she suggested my daughter might start zoloft which I'm not for at all. Had she been like she was a couple of weeks ago with no improvement I might have thought about resorting to this type of drug. I have the advantage of her genetics. I'm worried a MAO A +/+ (she is and I am) might not respond well to SSRIs (as I haven't) and will put her through torture just to find out they won't work.

 

[AndyPandy]

@sregan I am MAO-A +/+. I had a severe reaction to just one Zoloft many years ago. I don't know what the connection is between MAO-A+/+ and SSRIs but just wanted to share my experience with you.

I also have a number of SNPs which mean I am very sensitive to chemicals and meds and do not process drugs well. Think my CYP2D6 +/- (have 2 of these according to genetic genie detox profile) relate to SSRIs.

Best wishes for your daughter's improvement.

 

[Critterina]

Update: daughter saw a therapist yesterday. Will do psychotherapy with her and she suggested my daughter might start zoloft which I'm not for at all. Had she been like she was a couple of weeks ago with no improvement I might have thought about resorting to this type of drug. I have the advantage of her genetics. I'm worried a MAO A +/+ (she is and I am) might not respond well to SSRIs (as I haven't) and will put her through torture just to find out they won't work.

@sregan ,

Let me just say how impressed I am that you've been able to be so helpful to your daughter so quickly. Although I was feeling the same as DeGenesis about changing too many things at once, it seems they were the right ones.

When you mentioned SSRIs and MAO A (I'm +/-), it made me remember this: Although I was also a melancholy child, I had an episode of severe organic depression related to an autoimmune illness - over half my life ago. The prescription I was given was Desyrel, and it's mechanism of action was not known (at least back then). As I understand, there are three classes of antidepressants, SSRIs, tricyclics, and MAOIs, and then there are drugs like Desyrel that don't fall into any of the categories. It was considered extremely safe (for women) at the time, although I think it's attracted some warning statements through the years, but I checked within the last year and saw it was still available. I'm not saying it might work for your daughter, but if you decide to try a prescription approach, it might be something to ask the doctor about. I remember I was 80% better after taking 1/3 tablet two nights in a row. The constant, unbidden thoughts of suicide were completely gone (not your daughter's problem, I know, but the closest I've got to unwilling obsession with a compulsion to act on the thoughts - a compulsion I knew I couldn't resist forever, but I was trying). By the time I got to taking a whole tablet, I felt I didn't need it anymore, but you have to get off it slowly. The whole thing took about 2 months, getting on then off, and I never had to use it again.

So, I hope that you continue to have such good success with the supplements. I just wanted to throw out that idea, in case it becomes useful some day.

 

[sregan]

@sregan ,

Let me just say how impressed I am that you've been able to be so helpful to your daughter so quickly. Although I was feeling the same as DeGenesis about changing too many things at once, it seems they were the right ones.

When you mentioned SSRIs and MAO A (I'm +/-), it made me remember this: Although I was also a melancholy child, I had an episode of severe organic depression related to an autoimmune illness - over half my life ago. The prescription I was given was Desyrel, and it's mechanism of action was not known (at least back then). As I understand, there are three classes of antidepressants, SSRIs, tricyclics, and MAOIs, and then there are drugs like Desyrel that don't fall into any of the categories. It was considered extremely safe (for women) at the time, although I think it's attracted some warning statements through the years, but I checked within the last year and saw it was still available. I'm not saying it might work for your daughter, but if you decide to try a prescription approach, it might be something to ask the doctor about. I remember I was 80% better after taking 1/3 tablet two nights in a row. The constant, unbidden thoughts of suicide were completely gone (not your daughter's problem, I know, but the closest I've got to unwilling obsession with a compulsion to act on the thoughts - a compulsion I knew I couldn't resist forever, but I was trying). By the time I got to taking a whole tablet, I felt I didn't need it anymore, but you have to get off it slowly. The whole thing took about 2 months, getting on then off, and I never had to use it again.

So, I hope that you continue to have such good success with the supplements. I just wanted to throw out that idea, in case it becomes useful some day.

Thank you @Critterina,

I was lucky to have experience with the cortisol stress response and knew how to handle it. It was so comforting to see her anxiety drop and have her back to her normal self so quickly. I gave her some Holy Basil last night which also worked very well to calm her

My daughter was upset thinking there was the "magic pill" the therapist recommended and why weren't we giving it to her. I wish there was but had to explain to her the living hell I went through with my week on Prozac and told her I could never put her through that.

Cortisol blockers are what's helping her right now with the anxiety. The Obsessive thoughts are still there but don't have the horsepower they did before. I'm hoping the therapy can handle that. I'm still searching for other supplements that could help.

I seemed to have an initial good response with HCbl but the second time I tried make her anxious. I've read about Inositol also but am waiting as it helps some but seems to make others worse.

Thank you for mentioning Desyrel. I'll take a look into that. Your admission: "I remember I was 80% better after taking 1/3 tablet two nights in a row." is very impressive. I also ended up with a drug (Bupropion/Wellbutrin) that doesn't fit into those normal classes. That might also be something I might look into if it is used to treat OCD.

 

[sregan]

Update: My daughter has been to her second therapist. This one is a PhD and completely covered by my insurance.

The glutamine worked for a while then she started getting somewhat worse again. Was wondering when I needed to slow down the glutamine. I figured when she was tired at the end of the day would be a good sign.

Not sure where to go I decided on the shotgun approach. I gave her one of my Jarrow Multi vitamins

I crushed one up and put it on smaller capsules.

Again I had luck on my side. She responded beautifully and did not have any obsessive thoughts until over 24 hours later. She went all day Saturday and not until Sunday evening. I gave her 1/2 at that time. So I replaced everything with just that multi. She no longer needed the glutamine. For about 2 weeks this has worked beautifully.

Her anxiety symptoms got slightly worse so she needed again a glutamine at bedtime (just 2 nights ago but not last night). I added back some zinc and p5p in the AM and a Jarrow Mineral Balance. Last night she also got a Lithium (5mg).

After googling everything in the Jarrow Multi Vitamin's ingredient list with "OCD" I think the biggest help is the B vitamins and the "Inositol" and "Choline". Those last 2 by themselves are kind an ancedotal supplement treatment for "OCD".

Anyway we are finding balance with these sups and keeping the symptoms at bay while the psychologist can do her work. I'm very pleased with the success we have had and the ability to keep her off any drugs.

 

[Hip]

Why don't you look at the anti-anxiety protocol detailed here which has helped considerably quite a few patients on this forum with anxiety symptoms.

 

[sregan]

Why don't you look at the anti-anxiety protocol detailed here which has helped considerably quite a few patients on this forum with anxiety symptoms.

@Hip thank you for the link, a very comprehensive write-up you did! I had purchased some NAG a few months ago and I think it was because of this thread. I took one in the afternoon and slept incredibly well that evening. But was not able to repeat that success (as is the case with many other things I have taken that have helped).

OCD is, of course, an anxiety disorder. I have been keeping tabs on my daughter's level of anxiety and level of obsessive thoughts. Reducing her anxiety greatly reduces the impact of the obsessive thoughts and their frequency. They don't carry the weight that they do when she is anxious. But resolving the anxiety didn't make them go away.

How did you come to try the amisulpride btw?

 

[Hip]

@Hip thank you for the link, a very comprehensive write-up you did! I had purchased some NAG a few months ago and I think it was because of this thread. I took one in the afternoon and slept incredibly well that evening. But was not able to repeat that success (as is the case with many other things I have taken that have helped).

OCD is, of course, an anxiety disorder. I have been keeping tabs on my daughter's level of anxiety and level of obsessive thoughts. Reducing her anxiety greatly reduces the impact of the obsessive thoughts and their frequency. They don't carry the weight that they do when she is anxious. But resolving the anxiety didn't make them go away.

How did you come to try the amisulpride btw?

I've read that another thing that helps with OCD is boosting the serotonin system. This can be quite effectively with high dose inositol powder, if you don't want to go down the pharmaceutical route (inositol is a vitamin). I use high dose inositol myself quite a bit, in my case to help counter depression. Dose levels are around 2 heaped teaspoons of the powder. More info on inositol for OCD here.

Combining a serotonergic boosting agent like high dose inositol with anti-anxiety supplements like NAG will presumably be more effective that either on their own.


I read very low dose amisulpride may be beneficial for ME/CFS, and it was one of the things that I randomly just tried out. I find it excellent, and still take 12.5 mg daily. It helps a lot with the sound sensitivity problem of ME/CFS, and I also find it reduces the irritability mental state that is common in ME/CFS, plus it boosts energy. So I think this is a great drug for ME/CFS. These drugs can trigger diabetes as a side effect, but I think because I am taking such a low dose (1/100 th of the normal dose), this risk will be much smaller.