garyfritz
Senior Member
- Messages
- 599
I'm not sure if b12 makes me sleepy. I've always taken it at bedtime. The main thing is that it seems to calm the 3am jangled nerves and muscles twitches that have plagued my sleep for years.
-
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.
B12 for probably non-ME/CFS symptoms
- Thread starter garyfritz
- Start date
whodathunkit
Senior Member
- Messages
- 1,160
@garyfritz: MethylB12 helps with melatonin production. Alcohol disrupts it. Melatonin production is apparently governed by the health of your methylation production. I'm not up on the precise physiology, but there is a definite link.
FYI, a lot of people on this board (like @Tunguska) have reported getting sleepy from taking mB12. Some people have reported taking it only at night for that reason. I myself went through a short period where it made me really, really sleepy. It passed pretty quickly but for a few weeks I had a pretty hard time staying awake.
Your experience is definitely one I'm going to store for future reference. I drink very little, even socially, but once in a great while (every few years or so), under certain circumstances, old habits unfortunately get the better of me. If that ever happens again I will be ready. Forewarned is forearmed.
FYI, a lot of people on this board (like @Tunguska) have reported getting sleepy from taking mB12. Some people have reported taking it only at night for that reason. I myself went through a short period where it made me really, really sleepy. It passed pretty quickly but for a few weeks I had a pretty hard time staying awake.
Your experience is definitely one I'm going to store for future reference. I drink very little, even socially, but once in a great while (every few years or so), under certain circumstances, old habits unfortunately get the better of me. If that ever happens again I will be ready. Forewarned is forearmed.
garyfritz
Senior Member
- Messages
- 599
Still no 23andme report. Is there a standard set of supplements I should order (e.g. Freddd's "essentials") so I can start on the regime sooner? Or do I need to wait and see what 23andme says so I know what I need?
Freddd's writeup says to avoid glutamine. I've taken L-glutamine for 5-6 years -- my MD did a blood test and determined I was clinically low. It helped my sleep, but only for a week, but I kept taking it. It doesn't resolve the sleep issues by itself but I seem to have troubles if I go off it, even with b12. Should I wean myself off it?
Freddd's writeup says to avoid glutamine. I've taken L-glutamine for 5-6 years -- my MD did a blood test and determined I was clinically low. It helped my sleep, but only for a week, but I kept taking it. It doesn't resolve the sleep issues by itself but I seem to have troubles if I go off it, even with b12. Should I wean myself off it?
Last edited:
I think it depends - Freddd has unusual issues specific to himself, and his protocol is quite inflexible for anyone who has a negative or no response to it. I like the more science-based approach, using SNPs where research shows where we are more likely to have issues.
stridor
Senior Member
- Messages
- 873
- Location
- Powassan, Ontario
@whodathunkit I suggest that getting methylation wrong is as dangerous as low potassium for a subset of us.
In 2012, my Dr (who did not know about MTHFR etc at the time) put me on SAMe and TMG. It put me into the worst soul-sucking-suicidal depression in years. I lost perspective and insight and could not see the forest for the trees....all I had to do was connect the dots and stop the product.
With my personal history, this was a very dangerous situation. I was saved when someone on-line told me that I had "methylation problems".
@greyfritz I have had some of your symptoms. I had low thyroid symptoms that my Dr wouldn't treat. I have had RLS as well. I think that you are lucky in that you have a number of symptoms pointing to methylation and yet have managed thus far to avoid clinical ME.
Some ideas. As you may know B12 is needed to convert serotonin to melatonin. I take melatonin and tryptophan which helps me sleep. The tryptophan (used to take 5-HTP) I take in the late afternoon on an empty stomach and once again before bed. Melatonin is a great antidepressant and scavenges peroxinitrite which is implicated in ME and other CNS problems.
Tyrosine converts to dopamine and therefore norepinephrine. There is a low dopamine theory for RLS and ADD.
As far as thyroid symptoms go, here are a couple of thoughts....first - the brain can be hypothyroid independently of peripheral (and therefore measurable) blood measurements. For me, this manifests as mood dysregulation. While I can not be sure, I think that it was the addition of thyroid meds that dealt with the Bipolar Disorder symptoms.
Not all T3 and T4 is created equal. Those with mercury toxicity can substitute Hg for iodine and create a "nothing" molecule. Still good enough to fool a blood test though. There is also Reverse T3 that should be measured in people with symptoms and normal blood work. Also an antibody titre as these antibodies can attack the TSH receptors.
Many of your other MS-ish symptoms can be related to decreased myelin production which is methylation dependent. Mercury as well by interfering with methylation leads to these types of symptoms and some find relief just by having amalgams removed.
Many of us here have wonky SNPS but they are not in-and-of-themselves always driving symptoms. Many of us have gone on to find out what tripped us up. For me it was mercury, for others it is EMF, Lyme or mold, or...
brad
In 2012, my Dr (who did not know about MTHFR etc at the time) put me on SAMe and TMG. It put me into the worst soul-sucking-suicidal depression in years. I lost perspective and insight and could not see the forest for the trees....all I had to do was connect the dots and stop the product.
With my personal history, this was a very dangerous situation. I was saved when someone on-line told me that I had "methylation problems".
@greyfritz I have had some of your symptoms. I had low thyroid symptoms that my Dr wouldn't treat. I have had RLS as well. I think that you are lucky in that you have a number of symptoms pointing to methylation and yet have managed thus far to avoid clinical ME.
Some ideas. As you may know B12 is needed to convert serotonin to melatonin. I take melatonin and tryptophan which helps me sleep. The tryptophan (used to take 5-HTP) I take in the late afternoon on an empty stomach and once again before bed. Melatonin is a great antidepressant and scavenges peroxinitrite which is implicated in ME and other CNS problems.
Tyrosine converts to dopamine and therefore norepinephrine. There is a low dopamine theory for RLS and ADD.
As far as thyroid symptoms go, here are a couple of thoughts....first - the brain can be hypothyroid independently of peripheral (and therefore measurable) blood measurements. For me, this manifests as mood dysregulation. While I can not be sure, I think that it was the addition of thyroid meds that dealt with the Bipolar Disorder symptoms.
Not all T3 and T4 is created equal. Those with mercury toxicity can substitute Hg for iodine and create a "nothing" molecule. Still good enough to fool a blood test though. There is also Reverse T3 that should be measured in people with symptoms and normal blood work. Also an antibody titre as these antibodies can attack the TSH receptors.
Many of your other MS-ish symptoms can be related to decreased myelin production which is methylation dependent. Mercury as well by interfering with methylation leads to these types of symptoms and some find relief just by having amalgams removed.
Many of us here have wonky SNPS but they are not in-and-of-themselves always driving symptoms. Many of us have gone on to find out what tripped us up. For me it was mercury, for others it is EMF, Lyme or mold, or...
brad
garyfritz
Senior Member
- Messages
- 599
Thanks Valentijn, I'll wait for the report on my SNPs. And then hopefully someone can help me understand what to do with it.
Great comments, stridor, thanks. My symptoms have always been on the "annoyance" level -- occasional RLS driving me nuts, ADD limiting what I was able to do but I still did OK with my life, occasional sleep issues (but much worse in the last year or two), low energy, etc. I never had any severe emotional/depression issues, except in 2011-2012 when I was dealing with situational depression after a divorce. I always wondered if there was one common factor that caused or contributed to all of these issues, and from what you're saying it sounds like methylation problems are a likely suspect.
I've taken 5HTP for 5-6 years -- it helped me go back to sleep after waking up in the night (assuming I didn't have the muscle-twitching / wired symptoms as well). A few months ago I added L-tryptophan as an experiment; I have high LDL cholesterol and I read about a study claiming high LDL was a symptom of low tryptophan. Got my blood tested a few weeks ago but I haven't gotten the results yet. I totally forgot that I was already getting tryptophan in 5HTP; the L-tryptophan probably won't help the LDL (and I haven't noticed any additional sleep improvements) so I'll probably drop it.
My MD tested me for heavy-metals toxicity (urine test) in 2006. My mercury levels were in the mid/low reference range (0.80 ug/g creatinine, reference < 2.20), but of course things could have changed since then. My sleep issues definitely got a lot worse in the last 10 years, peaking last summer. It was starting to drive me crazy. (Crazier. Thank God my naturopath suggested trying B12.
This whole methylation thing is pretty overwhelming. There are many puzzle pieces that may or may not fit together, and I don't have the background to understand the interactions. The descriptions I've read so far tend to assume you already understand how this stuff works, and I definitely don't. I'll keep reading but in the meantime I appreciate the advice from you better-informed folks!
Great comments, stridor, thanks. My symptoms have always been on the "annoyance" level -- occasional RLS driving me nuts, ADD limiting what I was able to do but I still did OK with my life, occasional sleep issues (but much worse in the last year or two), low energy, etc. I never had any severe emotional/depression issues, except in 2011-2012 when I was dealing with situational depression after a divorce. I always wondered if there was one common factor that caused or contributed to all of these issues, and from what you're saying it sounds like methylation problems are a likely suspect.
I've taken 5HTP for 5-6 years -- it helped me go back to sleep after waking up in the night (assuming I didn't have the muscle-twitching / wired symptoms as well). A few months ago I added L-tryptophan as an experiment; I have high LDL cholesterol and I read about a study claiming high LDL was a symptom of low tryptophan. Got my blood tested a few weeks ago but I haven't gotten the results yet. I totally forgot that I was already getting tryptophan in 5HTP; the L-tryptophan probably won't help the LDL (and I haven't noticed any additional sleep improvements) so I'll probably drop it.
My MD tested me for heavy-metals toxicity (urine test) in 2006. My mercury levels were in the mid/low reference range (0.80 ug/g creatinine, reference < 2.20), but of course things could have changed since then. My sleep issues definitely got a lot worse in the last 10 years, peaking last summer. It was starting to drive me crazy. (Crazier.
Thank God my naturopath suggested trying B12.This whole methylation thing is pretty overwhelming. There are many puzzle pieces that may or may not fit together, and I don't have the background to understand the interactions. The descriptions I've read so far tend to assume you already understand how this stuff works, and I definitely don't. I'll keep reading but in the meantime I appreciate the advice from you better-informed folks!
garyfritz
Senior Member
- Messages
- 599
Gack!! I got email this morning saying 23andMe had "just received" my sample!? But I mailed it 16 DAYS ago!! I don't know if the sample even stay viable that long. I'm checking with them.
So I won't know my SNPs for another month. Grump.
In the meantime... in my first post I said B12 had miraculously resolved my sleep problems, and I'd been sleeping like a baby for 6 months. Well in the last ten days it seems to have quit working, or at least anywhere near as well as it was. I'm waking once or twice in the middle of the night with tensed and twitching muscles and agitation, and waking many times per night with less-serious symptoms. So I'm not getting much rest, and I'm waking up groggy and tired. I'm also experiencing more tingling/twitching during the day again. It's not as bad (yet?) as it was last fall, when I was thrashing and tearing the bed apart, but it's not great. Sometimes another shot of B12 will help me get back to sleep. I've tried increasing my B12 dose 3-4x and it's not helping.
So I won't know my SNPs for another month. Grump.
In the meantime... in my first post I said B12 had miraculously resolved my sleep problems, and I'd been sleeping like a baby for 6 months. Well in the last ten days it seems to have quit working, or at least anywhere near as well as it was. I'm waking once or twice in the middle of the night with tensed and twitching muscles and agitation, and waking many times per night with less-serious symptoms. So I'm not getting much rest, and I'm waking up groggy and tired. I'm also experiencing more tingling/twitching during the day again. It's not as bad (yet?) as it was last fall, when I was thrashing and tearing the bed apart, but it's not great. Sometimes another shot of B12 will help me get back to sleep. I've tried increasing my B12 dose 3-4x and it's not helping.
whodathunkit
Senior Member
- Messages
- 1,160
@garyfritz: are you taking methylfolate? Any of the other foundational methylation supplements (LCF or adenosylcobalamin)? Have you tried potassium (for the muscle symptoms)? Are you exercising at all?
FWIW, I've been through different "phases" on this journey with these supplements, and phases of better or worse sleep have happened at different times, for different reasons. I'm still trying to completely level everything out.
But I have noticed, for example, that the things that disrupted my sleep before methylation will still disrupt it now: bad diet for a couple days in a row, eating/drinking too close to bed time, overly strenuous workout or exercising too much in general, etc. Also, taking too much or too little of some supplement can do it, as well.
I also had minor outpatient surgery that required anesthesia and some painkillers for a few days afterwards, and it took me a month after that surgery to really get back to "normal". My sleep totally sucked for two weeks after the surgery. I was getting a bit worried about it but then got it corrected.
It could be that your episode with the wine knocked you somewhat out of rhythm and you haven't gotten back yet. I never discount the large effect that small disruptions like that can have on us, especially when we're experiencing subpar health in the first place.
However, rather than worrying overmuch about transient patterns, I just try to tweak my regimen and lifestyle habits to correct them. And my litmus test is always whether or not I've improved as a whole over time. So far, I have. I pretty much take two steps forward for every one step back. Overall I have more energy, my exercise tolerance has increased to an astonishing degree, and I handle some sleep deprivation much better than I used to.
It's still a work in progress.
I'm also beginning to see the truth of Freddd's assertion that exercise is an integral part of recovery. I don't know where you are on the exercise spectrum...many people have a long ways to go before they can even consider adding a small bit of non-stressful exercise to their daily regimen. But if you can exercise a little bit, try that. But don't overdo it. It might help you, as well.
Also, try supplementing potassium if you're not doing that.
P.S. I read on the 23&me site that it take at least six weeks to get your results. It actually sounds like you're on schedule with that.
FWIW, I've been through different "phases" on this journey with these supplements, and phases of better or worse sleep have happened at different times, for different reasons. I'm still trying to completely level everything out.
But I have noticed, for example, that the things that disrupted my sleep before methylation will still disrupt it now: bad diet for a couple days in a row, eating/drinking too close to bed time, overly strenuous workout or exercising too much in general, etc. Also, taking too much or too little of some supplement can do it, as well.
I also had minor outpatient surgery that required anesthesia and some painkillers for a few days afterwards, and it took me a month after that surgery to really get back to "normal". My sleep totally sucked for two weeks after the surgery. I was getting a bit worried about it but then got it corrected.
It could be that your episode with the wine knocked you somewhat out of rhythm and you haven't gotten back yet. I never discount the large effect that small disruptions like that can have on us, especially when we're experiencing subpar health in the first place.
However, rather than worrying overmuch about transient patterns, I just try to tweak my regimen and lifestyle habits to correct them. And my litmus test is always whether or not I've improved as a whole over time. So far, I have. I pretty much take two steps forward for every one step back. Overall I have more energy, my exercise tolerance has increased to an astonishing degree, and I handle some sleep deprivation much better than I used to.
It's still a work in progress.
I'm also beginning to see the truth of Freddd's assertion that exercise is an integral part of recovery. I don't know where you are on the exercise spectrum...many people have a long ways to go before they can even consider adding a small bit of non-stressful exercise to their daily regimen. But if you can exercise a little bit, try that. But don't overdo it. It might help you, as well.
Also, try supplementing potassium if you're not doing that.
P.S. I read on the 23&me site that it take at least six weeks to get your results. It actually sounds like you're on schedule with that.
garyfritz
Senior Member
- Messages
- 599
No, I thought I would wait for the 23andMe report to get a better idea of what I should be taking. Sounds like maybe I should start the process before then.
Currently I take calcium/magnesium, 5HTP, L-tryptophan (probably dropping that), L-glutamine (not sure if I should still keep taking it), vit D, and 1-2 500mcg sprays of B12 at bedtime. These days I'm often doing more B12 during the night. That's all I take right now. So you would recommend methylfolate and LCF and/or adenoB12? How much? Got a pointer to the Freddd/Rich protocol I should follow? I'm still lost among all the posts and documents...
Haven't tried potassium. I tried large amounts of Mg at one point and it seemed to help a little, but not much, and now I just take the cal/mag.
Hm. I just realized: I've had a near-constant stiff neck / sore muscles on the right side of my neck & into the shoulder area, for months. Like, just about since I started taking B12. Hmmmmm.
No, I'm not exercising a lot... usually this time of year I would be riding my bike at least occasionally, but I just got a motorcycle, soooo...
I do yard work once a week and that's about it. I know I "should" exercise more.That would be surprising, since having a few drinks is not at all a rare event for me!! I enjoy good food & wine and I get together with friends often. I live within 3 miles of 6 microbreweries and I believe in supporting my local businesses!! So during the 6 months when I was sleeping so wonderfully, I was having 1-3 drinks probably at least 2-3x per week. The drinks didn't bother me at all during that period -- until the B12 "quit working." The "wine episode" happened to be near the start of that "B12 quit working" period. Since then (only about 9-10 days) I've gone 2-3 days with no alcohol several times and still had night-time issues. So it looks to me like it's more a case of "my body adapted to the B12" rather than "alcohol is causing my sleep issues." But if I can't get it straightened out with the supplement regimen, I'll try going dry for a week or two and see if that changes anything.
I'm 57, but I'm in pretty good shape considering how seldom/irregularly I exercise. I'm thin and fairly muscular. I can attack a couple of hours of strenuous yardwork without too much difficulty. If I wasn't playing with my new 2-wheeled toy I would be biking and hiking. I'm just not very *consistent* with my exercise.
Thanks @whodathunkit!
Last edited:
whodathunkit
Senior Member
- Messages
- 1,160
@garyfritz: it does sound like you have some methylfolate deficiency symptoms and some minor potassium deficiency symptoms going on. Read the two sticky threads that are always at the top of this forum (the Detox forum): "B12: The Hidden Story", and "Active B12 Protocol Basics". First read the last few pages of each thread for more recent brand recommendations and some other recent info, and then go back and read both threads from the beginning. TONS of great information there. If you pay attention to those two threads they can get you well on your way, especially since you're not very sick to begin with.
Also worth noting is that alcohol "steals" methyl groups. So when you drink alcohol you're essentially depleting your body of the energy you're taking these supplements to create. Not saying alcohol is bad (it's one of my favorite parts of my culture, personally), but while you're trying to get your health back on track you may want to avoid for a while.
Also worth noting is that alcohol "steals" methyl groups. So when you drink alcohol you're essentially depleting your body of the energy you're taking these supplements to create. Not saying alcohol is bad (it's one of my favorite parts of my culture, personally
), but while you're trying to get your health back on track you may want to avoid for a while.
garyfritz
Senior Member
- Messages
- 599
@whodathunkit: Thanks, I'll check out those threads. I skimmed them when I first got here but I'll give them a more serious read.
I hear the point about alcohol. But it's one of my favorite things, too. My entire social life has food, wine, and beer woven through it.
Another thought, though... In 2012 I was in pretty serious depression due to a divorce. During that time, and possibly into 2013?, I cut way back on my alcohol consumption. It just wasn't worth it. The next day I always felt like $#|+. Not hangover symptoms, but full-body "feel BAD" sensations and much worse depression. Just a single beer was enough to ruin the next day.
At some point it got better and I started enjoying the occasional drink again. I don't remember if it was early in 2013 (when I started to crawl out of the depression) or later in 2013 (when I started taking B12).
If alcohol steals methyl groups, can we just boost the dosages to compensate? (After we're back on an even keel. I understand about removing the stressors while you're trying to heal.)
OK, gotta run. I'm meeting some friends for a brewery tour and pub trivia.
I hear the point about alcohol. But it's one of my favorite things, too. My entire social life has food, wine, and beer woven through it.
Another thought, though... In 2012 I was in pretty serious depression due to a divorce. During that time, and possibly into 2013?, I cut way back on my alcohol consumption. It just wasn't worth it. The next day I always felt like $#|+. Not hangover symptoms, but full-body "feel BAD" sensations and much worse depression. Just a single beer was enough to ruin the next day.
At some point it got better and I started enjoying the occasional drink again. I don't remember if it was early in 2013 (when I started to crawl out of the depression) or later in 2013 (when I started taking B12).
If alcohol steals methyl groups, can we just boost the dosages to compensate? (After we're back on an even keel. I understand about removing the stressors while you're trying to heal.)
OK, gotta run. I'm meeting some friends for a brewery tour and pub trivia.
garyfritz
Senior Member
- Messages
- 599
OK, I've been digging through those threads, and I'm still seeing a whole lot of confusing and/or conflicting information. Trying to find a starting point, I found this post of Freddd's:
I should get some potassium and find a multi without folic acid to provide the vits & mins he specifies. Also methyl folate (Solgar metafolin?). BTW apparently metafolin = methyltetrahydrofolic acid, but that is NOT folic acid? Folic acid = bad, methyltetrahydrofolic acid = metafolin = good?
Beyond that, I am more confused than before I read through those threads.
I want to figure this out. SOMEthing worked well during the past year. I started on B12 in early July last year, and within a month my sleep improved. By September I was sleeping much better, and through Oct - March I had fabulous sleep. I also got relief from the frequent-near-constant on-edge / crawl-out-of-my-skin / borderline RLS that I've suffered with for quite a while. I think I even had less cold sensitivity last winter. But within the last few months I feel it falling apart -- my sleep is getting worse, the daytime heebie-jeebies are coming back -- and I'm desperate bordering on terrified. I **DO NOT** want to backslide to where I was a year ago. My condition then was minor compared to what some folks here are fighting, but it was a nightmare for me.
So I want to understand how to restore the results I got last winter, apparently from B12, and support my body to be healthy. I just don't see how to form a plan of action based on the conflicting info I'm finding here. I see references to 20 or more supplements with no clear description of what to take. Is there a "Start here, dummy" beginner's guide anywhere that lays out the specific supplements, dosages, and schedules?
So Freddd says to start with Enzymatic Therapy, but not the Jarrow (even though he describes both as "Absolutely critical minimums for basic healing" ?). I suspect I should accelerate the startup, though, since I've been taking 500-2000 mcg of sublingual methylB12 (Readisorb) per day for 10 months. And start adding some dibencozide (adenosylB12) soon.
I should get some potassium and find a multi without folic acid to provide the vits & mins he specifies. Also methyl folate (Solgar metafolin?). BTW apparently metafolin = methyltetrahydrofolic acid, but that is NOT folic acid? Folic acid = bad, methyltetrahydrofolic acid = metafolin = good?
Beyond that, I am more confused than before I read through those threads.
I want to figure this out. SOMEthing worked well during the past year. I started on B12 in early July last year, and within a month my sleep improved. By September I was sleeping much better, and through Oct - March I had fabulous sleep. I also got relief from the frequent-near-constant on-edge / crawl-out-of-my-skin / borderline RLS that I've suffered with for quite a while. I think I even had less cold sensitivity last winter. But within the last few months I feel it falling apart -- my sleep is getting worse, the daytime heebie-jeebies are coming back -- and I'm desperate bordering on terrified. I **DO NOT** want to backslide to where I was a year ago. My condition then was minor compared to what some folks here are fighting, but it was a nightmare for me.
So I want to understand how to restore the results I got last winter, apparently from B12, and support my body to be healthy. I just don't see how to form a plan of action based on the conflicting info I'm finding here. I see references to 20 or more supplements with no clear description of what to take. Is there a "Start here, dummy" beginner's guide anywhere that lays out the specific supplements, dosages, and schedules?
garyfritz
Senior Member
- Messages
- 599
Well, interesting. It appears I had more "stuff going on" than I realized.
I had some sore skin in my right hip area for the last week or so. Nah, I thought, couldn't be shingles, it doesn't hurt enough. Then last night a rash showed up. Uh-oh, I think that **is** shingles. So today I went to the doc -- I lucked out and caught a last-minute cancellation with my very busy MD -- and she confirmed it.
Then she asked me how I'd been in general. She knew about my sleep issues -- she tried to find a solution 4-6 years ago -- so I told her about the B12. She grabbed the top sheet on her desk, which was a diagram of the full methylation cycle! Soon we were talking about SNPs and flavors of cobalamin and having a great old time.
Turns out she's been working on methylation stuff for about 2 years now. She says it's still pretty much a dark art but she's learning her way around it and following all the latest research. She wants to see my 23andMe report so we can figure out what I'm working with, and as soon as we get the shingles calmed down she wants to help me figure out the right approach. In the meantime she recommended I check out Amy Yasko's and Ben Lynch's sites.
So thanks to a bit of serendipity, I should have some help working my way through this. It won't be as cheap as "rolling your own" with help from the folks here, but I trust my MD and it'll be good to have some help from someone who is ALLOWED to diagnose, recommend, and prescribe.
I had some sore skin in my right hip area for the last week or so. Nah, I thought, couldn't be shingles, it doesn't hurt enough. Then last night a rash showed up. Uh-oh, I think that **is** shingles. So today I went to the doc -- I lucked out and caught a last-minute cancellation with my very busy MD -- and she confirmed it.
Then she asked me how I'd been in general. She knew about my sleep issues -- she tried to find a solution 4-6 years ago -- so I told her about the B12. She grabbed the top sheet on her desk, which was a diagram of the full methylation cycle! Soon we were talking about SNPs and flavors of cobalamin and having a great old time.
Turns out she's been working on methylation stuff for about 2 years now. She says it's still pretty much a dark art but she's learning her way around it and following all the latest research. She wants to see my 23andMe report so we can figure out what I'm working with, and as soon as we get the shingles calmed down she wants to help me figure out the right approach. In the meantime she recommended I check out Amy Yasko's and Ben Lynch's sites.
So thanks to a bit of serendipity, I should have some help working my way through this. It won't be as cheap as "rolling your own" with help from the folks here, but I trust my MD and it'll be good to have some help from someone who is ALLOWED to diagnose, recommend, and prescribe.
sueami
Senior Member
- Messages
- 270
- Location
- Front Range Colorado
Congratulations on finding a physician interested in methylation issues! I found one through links I followed from this site. He's outside the health insurance system though, so I'm paying cash. He had the methylation chart but seemed a bit hard to read when I showed him my supplements. He had little new to tell me about my snps and basically vetted the supplements from Freddd's protocol and said I knew what I was doing already and that he'd like to focus on healing leaky gut and that I should go forward slowly with the methylation supplements. I'd love to hear if your doc had more specific feedback for you.
Also, my 23andme report came in about 3 weeks after they received the sample, so maybe you won't have to wait as long as you fear for yours. I did get a little wigged out when they sent me some early results that were just my genetic ancestry data and feared I wasn't going to get any health results. I did, it just took another week or two.
Also, my 23andme report came in about 3 weeks after they received the sample, so maybe you won't have to wait as long as you fear for yours. I did get a little wigged out when they sent me some early results that were just my genetic ancestry data and feared I wasn't going to get any health results. I did, it just took another week or two.
garyfritz
Senior Member
- Messages
- 599
Thanks, Sue. I just talked to my doc this morning. We're going to wait until the shingles are calmed down and I get my 23&me results before we dive into it. So we didn't get into any specifics yet.
Small world dept: turns out Sue and I live in the same town!!
Small world dept: turns out Sue and I live in the same town!!
@garyfritz
Hi Gary
Im a latecomer on this thread and this is coming from left field, but looking at your symptoms everyone of them can be caused by a stomach bug called HPyroli. Its not always necessary to have stomach symptoms to have this infection.
It lodges in the stomach lining and is constantly lowering the stomach acid as it cant survive in an acid environment . To do this it uses B12 and manganese to create increased ammonia levels which lower stomach acid which causes poor detoxification and symptoms such as brain fog and ADD.
The reduced stomach acid also causes lower vitamin and mineral absorption including B12 and folate which makes increasing methylation difficult, as well as cause a lot of other symptoms.
The relief you have got from Glutamine points to Hpyroli as it is an HP antagonist and helps to reduce symptoms but wont eradicate the bug.
HP will fight back against it as you found out when supplementation stops, the same with B12 supplementation.
http://news.harvard.edu/gazette/sto...ents-show-promise-in-treating-stomach-ulcers/
Most doctors dont associate an Hpyroli infection with these sort of symptoms if there are no stomach distress symptoms, but its the most common infection around and is mostly dormant and asymptomatic until the stomach acid is sufficiently lowered.
This blog goes into some of the large mixture of symptoms which can be associated with HP such as hypothyroid,muscle spasms and skin problems.
http://www.mygutsy.com/is-h-pylori-...thyroid-autoimmune-disorders-adrenal-fatigue/
Hpyroli is a serious infection and supplements can sometimes help with symptoms, but research is showing it can be implicated in serious diseases such as Parkinsons and Alzheimers.
I think you might be advised to twist your doctors arm and get a stool test (which is the best) to check. Dont accept a blood test as you have been 'treating' Hp involuntarally by taking glutamine and B12 and it wouldnt be an accurate test.
It can be passed on to other members of a household so if you test + it might be advisable to get them tested.
garyfritz
Senior Member
- Messages
- 599
Thanks much for your post, @liverock! As a matter of fact, I **DO** have H. Pylori. I don't remember when -- 8-10 years ago? -- but I remember my MD tested me for it, and I've got it. I thought the main effect of HP was that it increased your risk of stomach ulcer. I didn't realize it could lower acid levels (while increasing ulcer risk!?), and I certainly didn't realize it could cause symptoms like mine!
I don't remember why my MD tested me for it, but I don't think she took any action as a result of discovering I had it. I will very definitely ask her about it when we start working on my methylation.
I will check the links you posted. Meanwhile if you have any specific recommendations for ways to defeat HP, I would love to hear them!
I don't remember why my MD tested me for it, but I don't think she took any action as a result of discovering I had it. I will very definitely ask her about it when we start working on my methylation.
I will check the links you posted. Meanwhile if you have any specific recommendations for ways to defeat HP, I would love to hear them!
You should ask your doctor if sh/e can do a urea breath test, this will tell you if the infection is active. I was treated for this 13yrs ago with abxs, anti-parasitical and stomach acid reducer. It can also lead to stomach cancer down the road.
@garyfritz abxs are antibiotics.
The stomach acid reducer I took (Losec) works in combo with the abxs and anti-parasiticals for the duration of the therapy, which lasted for 10 days. I did not take it after that. YES I want higher acid production too since I also have a malaborption problems. Not even sure if the infection was completely eradicated and it may have altered my gut for good.
The stomach acid reducer I took (Losec) works in combo with the abxs and anti-parasiticals for the duration of the therapy, which lasted for 10 days. I did not take it after that. YES I want higher acid production too since I also have a malaborption problems. Not even sure if the infection was completely eradicated and it may have altered my gut for good.