Thanks everyone!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thanks everyone!
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
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
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
- dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
TeriM
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
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
Thorne Methylguard Plus is a close equivalent to prescription Metanx. https://perskyfarms.com/phpBB2/viewtopic.php?t=18500
-
- Adélie Penguin
- Posts: 84
- Joined: Tue Dec 29, 2015 12:13 pm
- Location: oregon
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.
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
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
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
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
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
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
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
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
my learnings on the topic of methylationI 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?
- 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
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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
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
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
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.
That's a lot of magnesium. Do you divide it up during the day and take it with or after meals?
Tex
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.
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
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
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter