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Old 03-20-2011, 07:51 PM #121
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Originally Posted by MelodyL View Post
Hi, me again.

If you take Methyl B-12 it just might perk you up a bit. I have two friends who were always tired and their B-12 levels were in your range. I told them what I take. I told them where I got it and they began taking it also. You should see the change in them. One of them was slightly anemic also. Even taking iron didn't help her.

She's a new person now that she is taking Methyl B-12.

It gets confusing I know with all these vitamins and supplements, etc. Mrs. D. knows her stuff.

That's how I learned what I learned. By coming on these forums and reading.

Changed my life BIG TIME.

I wish you well.

Melody
Thanks so much for your help. Yes it is confusing. If anything, maybe I better not let the b12 drop lower since I just read:
"lower limit in Japan and some European countries is 500-550 pg/mL and is based on the level which causes mental manifestations such as dementia and memory loss."

Also I am not sure about potassium. Some information says 3.7 is ok and some say that is too low. I am interested in knowing especially when I saw the symptoms:
* Weakness, tiredness, or cramping in arm or leg muscles,
* Tingling or numbness
* Nausea or vomiting
* Abdominal cramping, bloating
* Constipation
* Palpitations (feeling your heart beat irregularly)
* Passing large amounts of urine or feeling very thirsty most of the time
* Fainting due to low blood pressure
* Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.

I have had all the symptoms that are bold. It doesn't explain the nightmares though unless that is psychological in nature.
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Old 03-20-2011, 09:46 PM #122
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Originally Posted by veggie View Post
Thanks so much for your help. Yes it is confusing. If anything, maybe I better not let the b12 drop lower since I just read:
"lower limit in Japan and some European countries is 500-550 pg/mL and is based on the level which causes mental manifestations such as dementia and memory loss."

Also I am not sure about potassium. Some information says 3.7 is ok and some say that is too low. I am interested in knowing especially when I saw the symptoms:
* Weakness, tiredness, or cramping in arm or leg muscles,
* Tingling or numbness
* Nausea or vomiting
* Abdominal cramping, bloating
* Constipation
* Palpitations (feeling your heart beat irregularly)
* Passing large amounts of urine or feeling very thirsty most of the time
* Fainting due to low blood pressure
* Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.

I have had all the symptoms that are bold. It doesn't explain the nightmares though unless that is psychological in nature.
Sounds like you are experiencing some anxiety in your life. Perhaps if you spoke to someone about this? Maybe the nightmares would stop??

I do wish you well.

Melody
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Old 03-21-2011, 07:49 AM #123
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There is a amino acid called methionine...and it is necessary for our bodies to make SAM...which is a methyl donor for neurotransmitter synthesis. Methionine is usually found in animal food sources. If you get low in this, you could fail to make enough for your brain to run on.
http://www.drlam.com/opinion/methionine.asp

MethylB12 is only pennies a day orally. You could start at the lower dosage, 1000mcg a day on an empty stomach.

Online discount vitamin sources, have it, but stores most likely not. I've used iherb.com and Puritan's pride with good results.
I would use the methyl for the reasons, that are posted here at the beginning of this thread.

Check the content of your food choices for nutrients at this site:
http://nutritiondata.self.com/

Japan has high standards for their B12 because they had a huge accident involving a common drug used there that depleted B12 and left many dead and disabled as a result. So they tend to be more aggressive with the blood levels they use. The drug was clioquinol (aka Vioform).
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Old 03-22-2011, 08:22 AM #124
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PLEASE consider gluten intolerance/celiac disease....your presentation would be classic.....
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Old 04-11-2011, 05:40 PM #125
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I’m new here, but have been lurking for awhile - great forum with lots of info and insights.

I’m a 51 yo male, overall very healthy until last July. During a gym workout, I experienced a quite strong and unfamiliar occipital headache. That event seemed to trigger a progression of troubling neurological symptoms…

- Occipital headache (mid July), recurring and initially brought on by exertion, over time reduced to occasional, burning recurring surface pain
- Left-side (only) facial numbness (chin to cheek to eyebrow) (onset late July) – this numbing sensation feels as if lying below the skin surface, with normal sensitivity (hot, cold, touch, pressure) on the skin
- Tingling over torso and extremities (onset September), leading to generalized shooting “electric” sensations over entire body and pins/needles in hands/arms/feet
- Tingling/burning tongue/mouth/lips and tingling scalp
- Burning feet/legs, to a lesser extent, hands (onset October)
- Fatigue, mood changes, and overall body ache

After multiple doc and neurologist visits, MRA /MRI, complete physical, labwork, ruled out aneurysm, stroke, MS, tumor, lupus, etc. – basically all dread disease. Neurologist assessed it as idiopathic SFN (no biopsy yet).

Throughout, I’d wondered about a possible B12 deficiency - symptoms seem to match and I’d been a vegetarian for most of the 90’s. I started supplementing oral and sublingual B12 (2-4 mg/day), just in case. Then, I “discovered” online a connection between B12 deficiency and PPI use – I was diagnosed with GERD in 2003 and was on reflux meds (Prevacid and Prilosec) non-stop for 7.5 years. I got off that medication immediately and had temporary relief from the burning pain.

I had my doc order a serum B12 test in late October. This came back @ 1400 (!), though I was well into supplementation by the time of the draw, which I understand can distort results and can’t rule out a deficient condition or resultant damage.

In November I started a very aggressive supplementation regimen advocated on another blog, with sublingual mB-12 (15 mg/day) and adB-12 (3mg/day) and a host of vitamins, etc. Symptoms improved somewhat November-December, but then plateaued and seem to be worsening now – especially the burning feet.

I’m unsure, but I still think this could be a B-12 problem. My docs are less convinced. Would appreciate any thoughts/insights, and hearing of others’ experiences that involve both cranial nerves and feet/legs.

Many thanks!
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Old 04-12-2011, 06:56 AM #126
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Welcome to NeuroTalk.

I'd ask you to go back to July and think what you were doing then?

Did you have a virus? Did you take RX drugs for anything? Antibiotics, Cholesterol lowering drugs?

Were you exposed to anything in your home or work?

B12 is only one player in nerve maintenance. Omega-3's are also involved. Also B6 and folate. If you have the MTHFR mutation you won't be methylating folic acid properly either. So methylfolate should be on your supplement list.

You might have to look to your diet... do a trial of gluten free to see if gluten is triggering you. There are other foods to think about...like the nightshade family, dairy, etc.

Do you consume alot of restaurant food? MSG is a powerful trigger in restaurant foods. Sugar consumption? Cutting back severely on sugar and high glycemic foods like white bread, rice, may help.

Have you had your Vit D tested? Low D is very common these days and needs addressing.

These are some starting points.

Can you share with us exactly and how much you are taking of other supplements?
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Old 04-12-2011, 12:14 PM #127
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Thanks for your speedy and thoughtful reply. It’s great to connect with folks who understand. I’ve been chasing this problem from many directions, so have touched many of these areas already. But you might have new insights…

1) Thinking back to July, I’d say I was among the healthiest people I know – regular exercise, modest diet, no major stressors. I was supplementing with a multi, Vit C, and fish oil. No prescription meds, but I was still on Prilosec daily dating to 2003. I did experience a very bad case of food poisoning at a fast food restaurant in late May. My doctors dismissed that due to the 6-7 week interval.

2) Can’t think of any exposures. My house is recent construction and my work is in a benign office building. It’s an older building, so I suppose some toxins are possible. I share that space with a business partner who has no symptoms. I had a hair analysis done late last year – no major problems identified.

3) I’m not aware of any MTHFR problems (though I see online that mutations are very common). I’ve been supplementing with methylfolate 800 mg daily since November.

4) I considered diet. Last year I’d say my diet was ok. I watched calories and fats, but not nearly enough whole foods. As well, I enjoyed too much coffee and diet soda. I dropped all artificial sweeteners in December, and have been off coffee since January.

5) I do consume a fair amount of restaurant food. Mostly at lunch during the workweek, and out for dinner once or twice during the week. I’m pretty careful with choices, though – places like Chipotle, Boston Market vs McDonalds and KFC for example. Also, in January, I decided to try a detox/cleanse. I followed “Clean” (Alejandro Junger) – you might be familiar with this program - 21 day elimination diet and detox. Among other, I removed all wheat, dairy, sugar, and nightshades. I stayed with that for 5 weeks, after which I incrementally reintroduced those foods watching for reactions, but found none. I was not overweight, but lost about 16 lbs while on that program.

6) My vitamin D was low last summer – 27 on my August lab. I started supplementing 1000-2000/daily at the time, and upped that to 4000-5000/daily this year. My March lab registered 66.

7) A few additional data points… My lipids improved significantly with changes in diet since last summer, but my March lab showed a very high C Reactive Protein – 8.4. Also, in March, I began to experience regular night sweats, some quite heavy – never had that before. Also, the other blog I’ve followed strongly advocates sublingual use of B12, not oral, so that has been my main use since starting the following regimen since November:

Daily Supplements:

MB12 (Jarrow) 5mg (3x) subingual
adB12 (Jarrow) 3 mg s
B Complex (Jarrow B-Right) (2x)
Metafolin 800 mg
Vit A 8000 iu
Vit C 1000 mg (was 4000 mg)
Vit D 4000-6000 iu
Vit E 400 iu
Calcium 500 mg (2x)
Magnesium 250 mg (2x)
Potassium 99 mx (4x)
Zinc 50 mg
Fish Oil 1400 mg (2x)
SAM-e 200 mg
L-Carnitine/ALA 500/150 mg (4x) (soon will change to R-Lipoic)
Co-Q-10 100 mg
Benfotiamin 150 mg (4x) (just started)

Whew...

Again, I'll appreciate any thoughts/suggestions.
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Old 04-12-2011, 12:46 PM #128
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I am going to put my comments in red within your quote:

Quote:
Originally Posted by svguy View Post
Thanks for your speedy and thoughtful reply. It’s great to connect with folks who understand. I’ve been chasing this problem from many directions, so have touched many of these areas already. But you might have new insights…

1) Thinking back to July, I’d say I was among the healthiest people I know – regular exercise, modest diet, no major stressors. I was supplementing with a multi, Vit C, and fish oil. No prescription meds, but I was still on Prilosec daily dating to 2003. I did experience a very bad case of food poisoning at a fast food restaurant in late May. My doctors dismissed that due to the 6-7 week interval. Campylobacter food poisoning, is capable of causing PN. Also other viruses may attack the ganglions along the spinal cord. There is a post in the SubForum recently by en bloc about testing for this with a new MRI procedure. Have you had chicken pox in the past? Herpes zoster can live in the ganglia too.

2) Can’t think of any exposures. My house is recent construction (out gassing formaldehyde? The benfotiamine may help this) and my work is in a benign office building. (do bug spraying people come there?) It’s an older building, so I suppose some toxins are possible. I share that space with a business partner who has no symptoms. I had a hair analysis done late last year – no major problems identified.

3) I’m not aware of any MTHFR problems (though I see online that mutations are very common). I’ve been supplementing with methylfolate 800 mg daily since November.

4) I considered diet. Last year I’d say my diet was ok. I watched calories and fats, but not nearly enough whole foods. As well, I enjoyed too much coffee and diet soda. I dropped all artificial sweeteners in December, and have been off coffee since January.

5) I do consume a fair amount of restaurant food. Mostly at lunch during the workweek, and out for dinner once or twice during the week. I’m pretty careful with choices, though – places like Chipotle, Boston Market vs McDonalds and KFC for example.(there will be substantial MSG in those foods) Also, in January, I decided to try a detox/cleanse. I followed “Clean” (Alejandro Junger) – you might be familiar with this program - 21 day elimination diet and detox. Among other, I removed all wheat, dairy, sugar, and nightshades. I stayed with that for 5 weeks, after which I incrementally reintroduced those foods watching for reactions, but found none. I was not overweight, but lost about 16 lbs while on that program. (that is pretty thorough)

6) My vitamin D was low last summer – 27 on my August lab. I started supplementing 1000-2000/daily at the time, and upped that to 4000-5000/daily this year. My March lab registered 66.

7) A few additional data points… My lipids improved significantly with changes in diet since last summer, but my March lab showed a very high C Reactive Protein – 8.4.(wowsers--that is high and significant--showing major inflammation) Also, in March, I began to experience regular night sweats, some quite heavy – never had that before. Also, the other blog I’ve followed strongly advocates sublingual use of B12, not oral, so that has been my main use since starting the following regimen since November:
(no difference between subling and oral...you swallow that saliva where most of the B12 is...very little is absorbed in the small space under the tongue.--make sure you do this on an empty stomach.)

Daily Supplements:

MB12 (Jarrow) 5mg (3x) subingual
adB12 (Jarrow) 3 mg s
B Complex (Jarrow B-Right) (2x)
Metafolin 800 mg
Vit A 8000 iu (I would drop this if it is retinol form, which competes with Vit D absorption--- beta carotene form is ok)
Vit C 1000 mg (was 4000 mg)
Vit D 4000-6000 iu
Vit E 400 iu
Calcium 500 mg (2x)
Magnesium 250 mg (2x) (is this magnesium oxide? if so it is useless)
Potassium 99 mx (4x) ( save your money-- this is very low amount--otc potassium is not strong enough One V8 has 800mg in it)
Zinc 50 mg
Fish Oil 1400 mg (2x) (with that high C-reactive protein you need higher Fish oil, or Krill oil)
SAM-e 200 mg
L-Carnitine/ALA 500/150 mg (4x) (soon will change to R-Lipoic)
Co-Q-10 100 mg
Benfotiamin 150 mg (4x) (just started)

Whew...

Again, I'll appreciate any thoughts/suggestions.
I think that high c-reactive protein needs some attention. Night sweats are not normal either. They may be due to impaired glucose tolerance...lows at night while sleeping. But they also come from infections. Some parasites do this too.

You could add in some anti-inflammatory antioxidants. Grapeseed extract is efficient and affordable to start. The Krill oil has astaxanthin in it (red). An enhanced curcumin product will cost more, but you could try it also if you want. I'd start with the grapeseed extract. 200-300mg a day.

This is a start for you. I'd Google high C-reactive protein and see if you can find some triggers there that are in your life now.
That seems really high to me!
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Old 04-12-2011, 07:23 PM #129
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Thanks mrsD for all the insights. You are a wonderful and very welcome resource. I’ll want to get back to you on some of those items, but here are some immediate thoughts...

That was the first time I’d seen CRP reported on my labs, and I must say that, after some research, I was quite frightened by that number. I took the CRP/sweats issues to my neuro – wondering which came first, the inflammation or the neuropathy - but he referred me back to my primary. That doc showed some concern (my EGD showed mild chronic gastritis – he thought that could be the problem) but focused on my PN pain and set up a trial of Cymbalta (which was awful). So next I’ll add the grape seed extract – thanks. Doc says we’ll recheck CRP over a few weeks time.

I started this morning with 5 mg mB12 orally on an empty stomach – will maintain that daily. The other blog (B12 deficiency) strongly advocates sublingual – says B12 diffuses into the tissue creating a gradient against the blood cells, where it is directly absorbed (more efficiently than oral or even injection). I hold the tablet between my upper lip and gum for 45-60 mins, 3x/day. I’ll continue with both methods for now.

When I first began mB12 supplementation last fall, I experienced some of the startup symptoms predicted on the other blog. They claim that these reactions are a very good predictor of active B12 deficiency - that folks with no deficiency will not react when given even very large doses of active B12. One such reaction that I experienced was persistent (several days, non-stop) muscle fascillations. They surmise these may be caused by rapid depletion (use) of potassium as the healing process begins. I took the K supplements directly and the fascillation ceased and so I added potassium to my daily supplement program.

Some troubling neurological symptoms did recede after I started the B12 protocol. But others persist, and now seem to be worsening. I'm still suspicious that some level of deficiency had a hand in my problems. Even so, it sounds like correcting any deficiency (or the damage it created) can take months, even years of steady assault and that symptoms wax and wane over the course of healing.

And, yes, I am using magnesium oxide. Can you suggest a better form? I am now starting a program with Nortriptyline, which last time gave me constipation, so I'll want an effective magnesium supplement on board to help with that.
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Old 04-13-2011, 07:57 AM #130
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The magnesium in your oxide IS a laxative...you can use it for that. Just don't expect it to help systemically.

I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

You can get it from food, by choosing wisely.

Magnesium is essential to helping repair nerves.

There are medical studies showing oral B12 works. You are taking a very high amount and only showing 1400 in blood level?

I and another member here using 5mg methyl B12 had readings at the maximum the test reads. (2000 for her and 1999 for me)
Do you have the link for that B12 sublingual claim. I'd like to see it.
Either PM me with the link (you cannot post it yet being a newbie) or give me the exact name of the blog, please?
Potassium is only depleted in those with severe anemia, as new blood cells are made with the B12 to get back to normal levels. There is considerable potassium in red cells. If you were not anemic...your need for potassium is not critical. We all should be eating 4500mg a day in our food, to stay healthy.

The long term use of Prilosec is concerning. There are some reports coming in about long term effects and the heart. I haven't found the papers yet (only a reference to it on a pay for view site so far).

But long term use of Prilosec has been linked to GI infections and lung infections. This is because the acid we normally have in our stomachs, kills off pathogens that may be in our food.
Without this acid those can cause illness. H. pylori for example can flourish in a lowered acid situation. Were you tested for this?

Those night sweats and high CRP levels, may be a sign of infection somewhere. Night sweats are also a sign of Lymphoma, so looking for swollen lymph nodes, might be a good idea.

An active viral situation in the ganglia, might also be your culprit. You can have Herpes simplex and zoster titres drawn to show if they are high. If so a course of antiviral may work. It does for some people with pain, and no skin outbreaks.
You can also try l-lysine in 1 to 2 gram a day amounts to see if that helps. If you see a decrease in pain, that would be your answer. My husband and I both had shingles in the past and we get pain, along our area of outbreak now and then. He just had a recurrance in his back, which went away quickly on the lysine this week. H.Zoster tends to outbreak in Spring for some reason commonly.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 04-13-2011 at 10:26 AM.
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