Adding L-5-MTHFR as a supplement has been miraculous and treacherous over the past 6 months. Finding the balance of taking enough to experience even energy levels and uplifted moods without getting looney or maniac is challenging.
I think I've finally arrived at an optimal dose for me. This doesn't mean that my optimal amounts will in any way be best for you. NOr that they'll remain the best for me. They could and probably will change. Other members of my family take way more than I do with terrific results.
I started with the prescription medication Deplin at 15 mg. I was looney. Flying. Nutty. Unbalanced as I had to hold onto furniture to get around the living room. Soon after that, I took 2400 mcg - a way lower amount. This worked superbly as my body began to methylate. My vision improved - I was reading 3 lines lower on the eye chart at the optometrist's. My hearing was improved. I finally understood why the Beatles were so remarkable. My energy was level. I no longer needed to take a nap every afternoon just to have enough energy to make dinner and spend a fun time with my husband when he came home from wotk.
But then, after a month or so, I was getting too anxious. I cut back to only 1800 mcg - 1000 at breakfast, 400 at lunch, 400 at dinner. Seems that most of the bottles come in 400 mcg amounts.
But, again after 2 months, I was getting weird. Looney is a far more pleasant mental state than mania. I was maniac. Fussy, wanting to cry. Wanting to rage. It seemed that my insides shook. Music sounded way too loud and agressive. Nothing my husband did was right. (He is so blessedly patient.) I simply couldn't calm down inside.
I started doing things to detox. I took infrared saunas twice a week. I wanted to binge on chocolate candy. My sleep was disordered. Finally one night after dinner I purposely broke a dish.
I was so startled that I googled MTHFR and discovered that too much MTHFR can create a build-up of SAMe. The remedy for this is to take Niacin. I did. The mania abated for a while. I researched SAMe. Side effects are mania especially if a person has a tendency to depression or anxiety.
During this time I had a weird rash on my side under my bra line extending toward my belly button. It was painful. I thought it was a series of spider bites. But it wasn't. It was shingles. They can erupt from stress.
I cut back to 400 mcg three times a day with meals.
I've become an angel again - at least compared to my maniac self. This amount is working perfectly for me now. All of the benefits of methylation have returned without any of the mania. The shingles attack has subsided. I feel clear once again.
My husband has agreed to let me know if I start getting maniac again as it's so hard to see in oneself. If this happens, I'll take some niacin and then figure out if I need to cut back again on the methyl folate.
What I've learned is that for me, there is no methylation perfectiion. Instead, for me, I have an ongoing "living in the question" strategy. Right now it's working and life is extraordinarily good.
Wednesday, September 17, 2014
Monday, September 8, 2014
Wow! Something's not quite right. I've been taking 1800 mcg of methyl folate and 1700 mcg of methyl B12 and I'm feeling deja vu. Flying, soaring, easily irritated, and I'm certain that I'm irritating to anyone who stands next to me. I should have known I was getting a bit loony when I streaked my dark brown hair with blond, then disliked it so strongly that rather than wait for my hair stylist to return to town, I covered it with a flat shade of brown. My internal rhythms were pounding and beating way too fast.
I've been on the supplements for 6 months. For about five months I definitely had more energy, wasn't tired all the time. My vision improved so much that I can now read three lines lower on the doctor's eye chart than I did last year. I hear music undertones I've never heard before. Now I know why the Beatles are so amazing. I finally can hear why.
But for the past week or so I'm on edge as in the old days before I tool the blood test for MTHFR. What's going on?
Yesterday I took the remedy suggested for an overload of methyl folate, namely niacin to reduce SAMe that's a byproduct of too much methylation, I felt better within 5 minutes. So it must be too much.
I've been on the supplements for 6 months. For about five months I definitely had more energy, wasn't tired all the time. My vision improved so much that I can now read three lines lower on the doctor's eye chart than I did last year. I hear music undertones I've never heard before. Now I know why the Beatles are so amazing. I finally can hear why.
But for the past week or so I'm on edge as in the old days before I tool the blood test for MTHFR. What's going on?
Yesterday I took the remedy suggested for an overload of methyl folate, namely niacin to reduce SAMe that's a byproduct of too much methylation, I felt better within 5 minutes. So it must be too much.
According to Dr. Lynch at www.MTHFR.net, the side effects of too much are: irritability, insomnia, sore muscles, achy joints, acne, rash, severe anxiety, palpitations, nausea, headaches, migraines. Fortunately, I've been spared the rash, acne, insomnia, palpitations, headaches, and migraines.
Tomorrow I cut back to 1400 methyl folate and 700 B12. And if I'm still wired and anxious, I'll cut back even more the day after tomorrow. The essential thing for me to remember is to use the niacin if I get too feisty.
I wonder if a person at first needs to build up the body with methylation, then cut back after a while. I've alerted my family members who have the mutation to notice if they get too anxious or have other side effects so they can also cut back. But hurrah for methylation. I'll keep you posted.
Wednesday, July 16, 2014
Check for MTHFR
After Pilates class this morning I chatted with a gal who has so many odd symptoms - and nothing she is doing for them is working. Plantar fasciitis, anxiety, insomnia, hormonal imbalances, arthritis-type aches and pains. And those are only the ones she mentioned. Plus she was on Prozac.
So far her strategy has been to do lots of juice fasts and detox routines, which, of course, help. But with all those symptoms, it sounded like she could have the MTHFR mutation. So I suggested she contact my doc, read through the www.MTHFR.net website, purchase those marvelous Foot Wakers to exercise her feet, plus purchase a pair of MBT shoes.
MBT shoes immediately stop the pain of plantar fasciitis and even though they are stylish in a very funky sort of way, no one would think they're sexy. What's sexy about them is they make your feet so happy that you'll feel sexier than if you continued to go for the glamour and thus chose to live with that excruciating pain and discomfort.
And, of course, get tested for the mutation.
I wonder how many folks with anxiety disorder couldn't be readily cured with methylfolate and methyl B12. And then toss the psychotropic medications and be happy naturally.
What surprises me is that I haven't heard of a psychiatrist or counselor who first suggests testing for MTHFR mutation before prescribing meds. It would reduce the amount of pain, the cost of those drugs, and perhaps folks could really live happier ever after. I know people can skip the drugs and go straight to methylation, once they know why they have such odd body things going on.
So far her strategy has been to do lots of juice fasts and detox routines, which, of course, help. But with all those symptoms, it sounded like she could have the MTHFR mutation. So I suggested she contact my doc, read through the www.MTHFR.net website, purchase those marvelous Foot Wakers to exercise her feet, plus purchase a pair of MBT shoes.
MBT shoes immediately stop the pain of plantar fasciitis and even though they are stylish in a very funky sort of way, no one would think they're sexy. What's sexy about them is they make your feet so happy that you'll feel sexier than if you continued to go for the glamour and thus chose to live with that excruciating pain and discomfort.
And, of course, get tested for the mutation.
I wonder how many folks with anxiety disorder couldn't be readily cured with methylfolate and methyl B12. And then toss the psychotropic medications and be happy naturally.
What surprises me is that I haven't heard of a psychiatrist or counselor who first suggests testing for MTHFR mutation before prescribing meds. It would reduce the amount of pain, the cost of those drugs, and perhaps folks could really live happier ever after. I know people can skip the drugs and go straight to methylation, once they know why they have such odd body things going on.
Tuesday, July 8, 2014
Family testing update - MTHFR
After learning about MTHFR, I wrote a book proposal and my
agent started to shop it around to health-book publishers. None had heard of
MTHFR. Probably because it's a new factor in understanding health issues.
Speaking of most folks not knowing about it, even though it
can affect as many as 10-20% of folks, my son tested homozygous for the C677TT
mutation. So I’m sending him the methylfolate vitamins, hoping it’s the right
amount. None of the docs in Muncie knew much about it. Since he's homozygous, that means that his
dad also has the mutation and he's mpw getting tested to discover the specifics.
Which leads me to my best friend. He has the characteristic elevated
homocystine levels associated with methylation deficiencies and only one gene
of the C677T so he’s heterozygous. This means it came from only one parent.
Often folks with heterozygous mutations don’t show any symptoms, but my best friend does.
MTHFR is only one aspect of a person’s genetic expression. Environmental factors, known as epigenetic factors are important, too.
Epigenetic factors include lifestyle – what you eat, where
you live, if you exercise, if you get enough sleep, if you use alcohol and/or
either prescription or recreational drugs, and more. The epigenetic factors are
usually within our control.
As for me, a couple notable results. I have tons more
energy. I seldom need naps and am now putting my energy into some house stuff,
joining the Copper Club at the Natural History Museum (took a field trip down
to Kanab, Utah last weekend and DID NOT return home from 3 intense days feeling like
a wrung-out washcloth. A super win.) My fingernails are growing really
fast, which means my metabolism is revving up. My vision is amazingly
clear. My allergies are revving down and this is high-allergy season in our
valley. My moods are almost sprightly. So all good. And the heavy moods haven’t
visited since I started on the Methylfolate – 7 weeks ago.
To read lots about this, the go-to website is www.MTHFR.net.
Letter to Family on MTHFR
This is the letter I sent to my brothers and sisters and the father of my son:
HI, Everyone,
Yesterday I received a stunningly odd piece of information
that affects all of us. Yes, I know you’re wondering, “ huh?”
A week or so ago at my annual physical, my doc wanted to add
an additional blood test, the results of which she thought could give us
additional information about why my year-long allergy elimination (LDA) program
has only been so-so successful. As a side note, in the past year, I have been
off all sugar (think chocolate candy), gluten, dairy - so you know I’ve been
truly committed to getting rid of these allergies.
The results of my standard blood test was great -
thanks to those great genes from Mom and Dad. Except for that odd blood test.
Turns out the test was for thrombophilia risk - a genetics test.
My results - I have a genetic mutation called, MTHFR Gene
C677T as being “TT; homozygous”. Homozygous means that I received the gene mutation
from both Mom and Dad, which means that you have a 75% or higher chance of
having it too. My son definitely has the heterozygous mutation - one gene
from me - and perhaps homozygous if his dad also gave him the gene.
This mutation explains a plethora of things that seem to run
in our family: addictions, serious chocolate cravings, many allergies, mood
swings, gluten intolerance (different from celiac disease), hypersensitivity,
and so much more. Over the years, I’ve been put on SSRI’s,
depakote, thyroid meds, tryptophan, prayer, meditation, and a wide variety of
natural remedies - none of which offered much improvement from what I think of
as general anxiety and hypersensitivity. The mutation taxes the liver lots
so that explains why I love Hot Yoga - the heat coupled with yoga detoxes the
liver, and it explains why we own an infrared sauna that I I use as a
“pick-me-up” when I feel sluggish. Also why I crave fresh veggies - again, they
help detox the liver. And chocolate somehow helps with the symptoms of this
mutation. The darker the better.
Biochemically, the mutation disrupts the very important
methylation cycle. This affects liver function, the normal production of brain
chemicals such as serotonin, and potentially causes many serious and mild
health conditions. A person who has this mutation must stop taking any vitamin
supplements that contain B12 in the form of cyanocobalamine, but it’s great to
take B12 as methylcobalamine. Also no folic acid in supplements.
The good news is that a person can dramatically improve
their health and often eliminate the symptoms by taking specific vitamins. For
the next week or so, my doc has me on an over-the-counter supplement called
“Methyl CpG” plus an RX called “deplin” which is L-methylfolate. After one day,
I can’t attest to much change yet, but my vision has gotten surprisingly clearer.
This mutation could explain Mom’s fatigue and discomfort
(especially if the docs were treating her anemia - which is a symptom of MTHFR
- with the cyano form of B12) and it probably goes a long way to explaining
the alcoholism in our family.
I have immense joy and hope that a protocol similar to mine
could be helpful for my son and could lessen his learning disabilities. That
would be a dream come true. So he’ll be tested soon and I’ll keep you up to
date on his experiences as well as mine.
If you are having some of symptoms of this mutation, I suggest
you check out the info I added to the bottom of this email and get a blood
test. There’s a list of docs who treat this mutation on a very informative
website, www.MTHFR.net. And if you google
MTHFR C667T, you can learn lots about MTHFR.
I have odd feelings about all this. On the one hand, my
health, energy, brain chemistry puzzle could be solved. Yeah! And I no longer
need to feel guilty about having these odd symptoms and allergies. And it’s
strange to write you a letter with this information. I care about all of you
lots, even though you may not be aware that I do.
I wish you great joy and love,
Friday, July 4, 2014
MTHFR - Involving my family
After receiving my blood test results, I shared them with my four siblings, my son, and ex-husband. Only one brother chose to get tested. He also has the mutation and is on supplementation.
My adult son has the homozygous C667T mutation like I do. Getting him on supplementation is challenging due to family politics. However, I'm relieved to know why he has learning disabilities and anxiety. It's taken the burden off of me, in an interesting way. Homozygoud means that my son received one mutation from me and one from his Dad. So, fingers crossed, in the next couple months or so, in the next couple month, family issues will get resolved and he'll be taking the supplementation.
My ex-husband had to have at least one mutation since my son was homozygous, and, indeed, he does. So he's now on methyl folate recommended by his doctor.
My spouse's doc recommended he have the blood test and the results show he's heterozygous. He's taking Methyl-Pro 15 plus 5000 methyl B12 as his body seems to need more than mine does. He seems happier, more creative, and is more energetic. Which is fun for me.
We then had one of his sons tested who turned out to be heterozygous. I sent him the same products I'm taking. He has what could be deemed IBS and anxiety so it will be interesting to see if the supplementation aids his overall health. Right now, we're having the other two sons tested at www.23andme.com.
I need to tell you that everyone I've mentioned above have wonderful and endearing personalities. As best I know. So I'm hoping for health and well being successes, not for major life-changing results. Should that happen, that would be fine, too.
My adult son has the homozygous C667T mutation like I do. Getting him on supplementation is challenging due to family politics. However, I'm relieved to know why he has learning disabilities and anxiety. It's taken the burden off of me, in an interesting way. Homozygoud means that my son received one mutation from me and one from his Dad. So, fingers crossed, in the next couple months or so, in the next couple month, family issues will get resolved and he'll be taking the supplementation.
My ex-husband had to have at least one mutation since my son was homozygous, and, indeed, he does. So he's now on methyl folate recommended by his doctor.
My spouse's doc recommended he have the blood test and the results show he's heterozygous. He's taking Methyl-Pro 15 plus 5000 methyl B12 as his body seems to need more than mine does. He seems happier, more creative, and is more energetic. Which is fun for me.
We then had one of his sons tested who turned out to be heterozygous. I sent him the same products I'm taking. He has what could be deemed IBS and anxiety so it will be interesting to see if the supplementation aids his overall health. Right now, we're having the other two sons tested at www.23andme.com.
I need to tell you that everyone I've mentioned above have wonderful and endearing personalities. As best I know. So I'm hoping for health and well being successes, not for major life-changing results. Should that happen, that would be fine, too.
MTHFR C667T - taking Methyl Folate and methyl B12
Three and one-half months have passed. I've been methylating and having amazing results. I take a nutritional supplement, Methyl CpG,with breakfast. I has 2000 mcg of methyl folate and 1000 mcg methyl B12. in the evening I take Thorne Basic B which contains 400 mcg methyl folate and 200 mcg methyl B12 plus additional B vitamins. If I start feeling that deep exhaustion, I'll add about 1250 mcg methyl B12 lozenge. I break up a 5000 mcg tab into 4 pieces and let one peice dissolve under my tongue.
It took a week or so figure out how much to take. My doc gave me a sample of the prescription drug, Deplin 15. I took one a day, I was flying my the end of day 3. I was looney. Playing bridge with some friends, I just couldn't focus. Too much Deplin was weird. Everyone noticed. But I didn't do anything extreme or peculiar. The next day I cut back to the Methyl CpG and seemed to find a balance.
My doc told me I didn't need much. She was so right.
In the past 14 weeks, here are the results I've seen:
It took a week or so figure out how much to take. My doc gave me a sample of the prescription drug, Deplin 15. I took one a day, I was flying my the end of day 3. I was looney. Playing bridge with some friends, I just couldn't focus. Too much Deplin was weird. Everyone noticed. But I didn't do anything extreme or peculiar. The next day I cut back to the Methyl CpG and seemed to find a balance.
My doc told me I didn't need much. She was so right.
In the past 14 weeks, here are the results I've seen:
- Not feeling the deep exhaustion.
- Seldom take naps, whereas before methylation supplementation I was taking 2-3 hour naps 2-4 days a week. I may still nap at times, but only 20-30 minutes 1-2 days a week.
- My vision has dramatically improved. At the eye doctor's, I can read two lines lower than I did last year. I find this amazing.
- Not as anxious. One day I missed taking my morning supplement and began to feel that old familiar body agitation and anxiety. But fortunately, within 20 minutes of taking methyl folate, I was back to my MTHFR-adjusted self.
- Stayed awake and active with dinner guests until 11 pm. I only yawned once and didn't feel drained, anxious, and eager for them to say their goodbyes.
- I approach day-to-day chores with calm and clarity.
- I no longer feel overwhelmed by too much to do.
- I am setting up more social activities for us than before. I now have the energy and interest to go out 3-5 nights a week. Before methylation 2 nights a week was max. My husband loves to socialize and to go places, so he's more content. And I'm finding that I love it.
- My hair is growing faster, so are my fingernails.
- Had white bumps on upper arms for years - like whitheads - they're gone.
- More muscle tone and stamina.
As I read back through my journal, my body took a while - between 2-3 months to adjust. plus my brain and being have taken a while to adjust to methylation. I had ups and downs, doubt and reassurances. But today, I'm quite pleased. And joyous.
Wednesday, May 7, 2014
Whoa, I have the MTHFR genetic mutation
That extra blood test my doc ordered at my annual physical changed
things. Her keen intuition led me to happier health. But it also explained so
many things I’d wondered about for years.
Why was I so often and inexplicably tired? Why had my upper arms
had white bumps, that were similar to whiteheads continually throughout my life?
Why couldn’t I use laughing gas in the dentist’s chair without getting totally
loony and paranoid? Why did I love chocolate so very much? Why did my body seem
to need so many nutritional supplements? And why was my son born with learning
disabilities and a plethora of food allergies? What gave him continual ear
infections and eczema? Why was he so delayed learning to walk, talk, and ride a
bike?
My test results for the MTHFR mutations blood test were
homozygous C677TT. Homozygous indicated I received one such gene from my mother
and one from my father. MTHFR mutation means that I have methylation
deficiency. In short, my metabolism wasn’t working correctly and some of the
supplements I took were actually making it worse. My impaired metabolic
functions were stressing my liver. It needed to be detoxed. I had to toss
supplements that contained folate and/or the cyanocobalamin form of B12. In
their place, I was to take L-methylfolate and B12 as methylcobalamin.
I didn’t need a doctor’s prescription or many more doctor visits.
Information on methyl deficiency abounds on the Internet. Google pulls up
answers to any question I had.
I was unprepared for the flood of information. I spent the hours
on the Web to learn all I could. Chances were good, I thought, that my son,
Brian, had the mutation, too. I needed to get him tested.
Once I accommodated my mind and emotions to the news, I sent a
letter to my 4 siblings:
Hi, Everyone,
Yesterday I received a stunningly odd piece of
information that affects all of us. Yes, I know you’re wondering, “ huh?”
A week or so ago at my annual physical, my doc wanted
to add an additional blood test, the results of which she thought could provide
additional information about why my year-long allergy elimination (LDA) program
has been only so-so successful. As a side note, in the past year, I have been
off all sugar (think chocolate candy), gluten, dairy - so you know I’ve been
truly committed to getting rid of these annoying allergies and chemical
sensitivities.
The results of my standard blood test was great
- thanks to those great genes from Mom and Dad. Except for that odd blood
test. Turns out the test was for thrombophilia risk - a genetics test.
My results - I have a genetic mutation called, MTHFR Gene
C677T, as being “TT; homozygous”. Homozygous means that I received the gene
mutation from both Mom and Dad, which means that you have a 75% or higher
chance of having it too. My son, Brian, definitely has the heterozygous
mutation - one gene from me - and perhaps homozygous if his dad, Bob, also gave
him the C677T mutation. If Bob has the A1298C mutation, Brian could have 2
different mutations of MTHFR.
This mutation explains a plethora of things that seem
to run in our family: addictions, serious chocolate cravings, many allergies,
mood swings, gluten intolerance (different from celiac disease),
hypersensitivity, and so much more. Over the years, I’ve been put on Prozac
(and other SSRI’s), depakote, thyroid meds, tryptophan, prayer, meditation, and
a wide variety of natural remedies - none of which offered improvement from
what I think of as general anxiety and hypersensitivity. The mutation
taxes the liver lots so that explains why I love Hot Yoga - the heat coupled
with yoga detoxes the liver, and it explains why years ago we purchased an
infrared sauna that I use as a “pick-me-up” when feeling sluggish. Also why I
crave fresh veggies - again, they help detox the liver. And chocolate somehow
helps with the symptoms of this mutation. The darker the better, as we all
know. The mutation explains how I can have osteopenia although I exercise
avidly 3-4 times weekly, why I’m unable to use laughing gas – nitric oxide at
the dentists, and why my muscles cramp and my joints often ache.
Biochemically, the mutation disrupts the very important
methylation cycle. This affects liver function, the normal production of brain
chemicals such as serotonin, and potentially causes many serious and mild
health conditions. A person who has this mutation must stop taking any vitamin
supplements that contain folic acid and B12 in the form of cyanocobalamine, but
it’s great to take B12 as methylcobalamine.
The good news is that a person can dramatically
improve their health and often eliminate the symptoms by taking specific
vitamin formulations. For the next week or so, my doc has me on an
over-the-counter supplement called “Methyl CpG” plus an Rx called “deplin”
which is L-methylfolate. After one day, I can’t attest to much change, but my
vision has gotten surprisingly clearer. I ordered special daily vitamins to
treat MTHFR from Hardy Nutritionals which I think is in Canada.
This mutation could explain Mom’s fatigue, anemia, and
discomfort (especially if the docs were treating her anemia - which is a
symptom of MTHFR - with the cyano form of B12) and it probably goes a long way
to explaining Dad’s alcoholism as well as that of other family members.
I have immense joy and hope that a protocol similar to mine
could be helpful for Brian and could lessen his learning disabilities and mood
swings. That would be a dream come true. Both he and his Dad will be tested
soon and I’ll keep you up to date on Brian’s experiences as well as mine.
If you are having some of symptoms of this mutation, I
suggest you get a blood test. There’s a list of docs who treat this mutation on
a very informative website, www.MTHFR.net. And if you google MTHFR
C667T, you can learn lots about MTHFR.
I have odd feelings about all this. On the one hand, my
health, energy, brain chemistry puzzle could be solved. Yeah! And I no longer
need to feel guilty about having these odd symptoms and allergies. And it’s
strange to write you a letter with this information. I care about all of you
lots.
I wish you great joy and love,
Lucy
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