Thanks everyone!

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
TM
Adélie Penguin
Adélie Penguin
Posts: 74
Joined: Sun Feb 19, 2017 4:46 pm
Location: Oregon Cascade Foothills

Thanks everyone!

Post by TM »

Hi Everyone,

With apologies for failing to contribute to the conversation for so long, I continue to listen and learn from all of you wonderful people who give so freely of your knowledge, support and time. So before 2018 draws to its official conclusion I wanted to at least chime in with a thank you.

I hope to provide another MC “progress report” soon. February marks 2 years since I received my EnteroLab results, changed my diet and began annoying multiple doctors with repeated inquiries regarding mast cells and histamine. Amazingly, I’m finally getting somewhere! Unfortunately “time management” and brain fog are not among the areas in which I’ve seen improvement. So despite my frequent intentions to participate, I can’t seem to focus for long enough to do so.

Sincerest thanks to everyone for all your help these past 2 years. Hope 2019 is filled with bright and healthy days for all. Happy New Year!

With warmest regards,
Teri
TeriM

“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
User avatar
dolson
Gentoo Penguin
Gentoo Penguin
Posts: 310
Joined: Fri Mar 30, 2018 12:35 pm
Location: Hilton Head, SC
Contact:

TeriM

Post by dolson »

I'm glad you're on board and you've found some semblance of relief. I've experienced Brain Fog to the extreme. I'm always losing things, words escape me and I feel tired and irritable. I have good days but bad days are a big problem!

Doesn't it help to converse with people who are just like us? It helps me. This forum is top notch and we owe it all to Tex and his wonderful moderators. Dorothy
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Teri,

Have you tried the Thorne Methylguard Plus (1 per day). It took me about 8 weeks but that is what kicked me out of my brain fog.
A lot of folks on here use it. It has the more absorbably (by our bodies) B vitamins.

Great update too!

Brain fog was about the last thing that cleared up for me.
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Thorne Methylguard Plus is a close equivalent to prescription Metanx. https://perskyfarms.com/phpBB2/viewtopic.php?t=18500
christinafriberg
Adélie Penguin
Adélie Penguin
Posts: 84
Joined: Tue Dec 29, 2015 12:13 pm
Location: oregon

Post by christinafriberg »

Teri-are you by chance in Bend? I noticed you're in the foothills of the Cascades.
Christina
TM
Adélie Penguin
Adélie Penguin
Posts: 74
Joined: Sun Feb 19, 2017 4:46 pm
Location: Oregon Cascade Foothills

Post by TM »

Thanks Dorothy,
Yes, this forum and its members are quite extraordinary!
Teri
TeriM

“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
TM
Adélie Penguin
Adélie Penguin
Posts: 74
Joined: Sun Feb 19, 2017 4:46 pm
Location: Oregon Cascade Foothills

Post by TM »

Christina,
I live on the rainy side of the mountains—out in the sticks on the SE side—although the suburbs are getting closer every year. I heard that Bend has been growing as fast or faster than Portland but haven’t been there since the 80’s.
TeriM

“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
TM
Adélie Penguin
Adélie Penguin
Posts: 74
Joined: Sun Feb 19, 2017 4:46 pm
Location: Oregon Cascade Foothills

Post by TM »

Brandy, you’ll probably be sorry you asked!!

I started taking Methyl Guard and additional methylated B’s in 9/2017 and switched to MethylGuard Plus after about 2 months. I didn’t eat any fortified foods, nutritional yeast, etc. but my B-12 which has been on the high end of normal for at least 5 years (possibly always—same for folate) was tested in November 2017 because of new numbness in my right big toe. B-12 was way out of range at >1500 pg/mL,(Standard range = 211-911 pg/mL). So I took a break from B’s but a month later B-12 had increased to > 2,000 and it took another 9+ months to very slowly get (barely) within range at 889 pg/mL last October.

I’m heterozygous for both of the main MTHFR mutations, have significant histamine/mast cell issues and think I probably have a functional B-12 deficiency. I’ve experienced symptoms of B-12/folate deficiency intermittently for decades—most notably in connection with pregnancy 35 years ago. It’s actually been easier to get my doctor(s) to treat mast cell issues than to make any sense of B-12 levels . As far as I can tell they’ve ordered the tests recommended by functional practitioners, but haven’t established anything conclusively.

I still can’t figure out whether I’m over-methylated or under-methylated since the symptoms seem to overlap and be very subjective. I can’t find any definitive info. Anyone familiar with this stuff?

Anyway, I’m reluctant to try MG+ again, since elevated B-12 is potentially as problematic as deficiency. I’ve been preoccupied with other issues so figured I’d put this one off again. Thanks, though.

Teri
TeriM

“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Hi Teri,

Two other things to check re: brain fog/fatigue. Have them do blood work on your iron/ferritin levels. Mine were borderline low
but pronounced normal. I was menopausal but still had very low ferritin. I had to supplement to bring them up.
It is rare for men and post menopausal women to have low iron but it can happen to those with IBD's.

The other thing to check into would be hormone levels. I am female but I was showing 0 testosterone, very low
progesterone (I think that was close to 0) and my other hormones were very low. Women are supposed to have
a smidge of testosterone.

The fatigue when I had 0 testosterone was mindnumbing. I felt like death literally.

I remember bringing up my iron levels. It took about 5 months to bring up my scores but every 3-4 weeks I could
think more clearly. My biggest symptom of the low iron period was atypical anger.

I resolved the WD pretty quickly but getting to the bottom of the brain fog/fatigue probably took me about 18 months of figuring things out.

Keep searching.......Brandy
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

I still can’t figure out whether I’m over-methylated or under-methylated since the symptoms seem to overlap and be very subjective. I can’t find any definitive info. Anyone familiar with this stuff?
my learnings on the topic of methylation
- there is no such thing as under or over methylation.
- the methylation cycle is a complex cycle of about 60 processes some of this can be under active while other can be over.
(explains your B12 situation that occurred)

- there is way way more to methylation than just MTHFR 677 and 1298.
(i did not have either of the SNP's but did have major methylation issues)

given the histamine/mast cell issues, My suggestion is to take P5P (active B6) on its own with magnesium
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

I'm glad Gabes chimed in :grin:
TM
Adélie Penguin
Adélie Penguin
Posts: 74
Joined: Sun Feb 19, 2017 4:46 pm
Location: Oregon Cascade Foothills

Post by TM »

Thanks Brandy and Gabes. Very helpful info as usual.
Brandy,
It’s been awhile since my hormones were tested, but all levels tended to be normal or high. Now (unfortunately) I’m taking Tamoxifen which drains every iota of estrogen from my body.

In 2018 my ferritin level was about 50, which is down toward the bottom of the normal range of 10-291 ng/mL. But that range is so broad that virtually anything above 0 looks pretty normal. Do you recall roughly what was considered low for you and what type of iron you took to increase it? I’m anywhere from mildly to significantly “out-of-range” on so many blood and urine tests that I lose sight of the ones that are “borderline.” Its hard to keep up with them all!

Gabes,
I did just that: stopped all B’s except P5P. Had a feeling that most (if not all) of the methylation info I’d seen was oversimplified and very subjective.

I’m still having trouble raising my magnesium level (RBC Mag = 4.1 mg/dL—another borderline result) despite 1,000 to 1,400 mg of magnesium glycinate daily plus topical mag oil 2X daily and 10,000 IU D3. If I skip an application, or don’t take enough orally, the muscle cramps return within a day or two.
Teri
TeriM

“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Terri wrote:I’m still having trouble raising my magnesium level (RBC Mag = 4.1 mg/dL—another borderline result) despite 1,000 to 1,400 mg of magnesium glycinate daily plus topical mag oil 2X daily and 10,000 IU D3. If I skip an application, or don’t take enough orally, the muscle cramps return within a day or two.
:shock:

That's a lot of magnesium. Do you divide it up during the day and take it with or after meals?

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
TM
Adélie Penguin
Adélie Penguin
Posts: 74
Joined: Sun Feb 19, 2017 4:46 pm
Location: Oregon Cascade Foothills

Post by TM »

Tex,
The mag glycinate doesn’t seem to affect me digestively at all—whether I take it on an empty stomach, with meals or after. So depending on my schedule/location I take them when convenient during the day and at bedtime. I’ve been taking a lot of magnesium (and prescription KCL) for about 9 years—but my levels never seem to increase much—always near the bottom of the normal range for both. I thought this would change when I started gaining weight, but it hasn’t, and I’ve since been diagnosed with hyponatremia and also prescribed NaCl supplements.
Teri
TeriM

“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Post Reply

Return to “Main Message Board”