[mrsD]

I am going to put my comments in red within your quote:

Originally Posted by svguy

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!

[svguy]

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.

[mrsD]

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.

[svguy]

OK thanks for the magnesium link - lots to review there. I’ll read through and pick a different form. I certainly want to be using something that could help in nerve repair.

My serum B12 test was taken early in my supplementation, before I began the full regimen shown above. I suspect I’d measure much higher today. I wish I’d been tested before beginning any b12 therapy to better assess if a deficiency is truly at the root of my problems. In October, after the onset my burning feet, my overall mood dropped and brain fog set in. I had great difficulty concentrating and spent a lot of time curled up on the sofa in a daze. Sleep was my only refuge. The weekend I stopped the Prilosec, that malaise reversed, and my burning pain lifted. That was the time I became very suspicious of B12.

Since then, I’ve been following the B12 deficiency thread at Wrong Diagnosis dotcom. The thread was launched by Sally Pacholok, who authored “Could it be B12, an Epidemic of Misdiagnosis.” There is a primary, ongoing thread for discussion, as well as a basics thread (like a Sticky). The basics page includes several posts as overview and introduction and covers the sublingual approach and the potassium issue as well. I’ll pm you the links.

I am dismayed at my long term use of the PPI medication, which was deemed safe by my primary as well as the prescribing ENT. I feel certain that it contributed to my current condition. B12 has been my main concern, but as you now suggest I can see where other problems might arise. In November I had an EGD and was tested negative for helicobacter. BTW, once I dropped Prilosec the heartburn began kicking in. However, since completing that detox/cleanse (and adding probiotics), I’ve had zero problems with heartburn.

I am very concerned about the high CRP and night sweats – that just isn’t normal – and so I appreciate your inputs on this. I tend to believe the inflammation and neuropathy go hand-in-hand.

An active viral situation would be another concern. I have no known history of herpes infection or shingles, but did contract chicken pox as a child. I’ll certainly explore it (hope I can get my doc to buy in on the testing).

[mrsD]

I am aware of that thread at Wrong Diagnosis...

The main poster on it came from here...our other incarnation board. Basically he took Rose's information, and expanded on it greatly.

You don't have PMs activated...I couldn't send you one.

But this is Rose's website, which I refer to in the B12 thread:

http://sites.google.com/site/roseannster/home

Please activate your Private messages in your options field, so I can discuss this with you.

[Jolina]

question for anyone.. My b12 level was 249 they told me to take 1000 vit a day. I see that that is way to low of a dose.. I have also been taking it with food. so my question is. I have a friend that has a powder from Kirkmans that is the methylcobalamin that her kids take it is 5000 does.. has anyone heard of this and will this work?? or should I see if Kirkman's has a pill form.

[mrsD]

Welcome to NeuroTalk.

Originally Posted by Jolina

question for anyone.. My b12 level was 249 they told me to take 1000 vit a day. I see that that is way to low of a dose.. I have also been taking it with food. so my question is. I have a friend that has a powder from Kirkmans that is the methylcobalamin that her kids take it is 5000 does.. has anyone heard of this and will this work?? or should I see if Kirkman's has a pill form.

There are 5mg doses at iherb.com from several manufacturers.
Also Puritan's Pride started carrying methylB12 oral too, which I took as a trial to see if it works, and it does splendidly. You can save alot of money with their sales. Soon the buy one get 2 free will be offered. Usually in early summer.

When taking methylcobalamin orally you MUST take it on an empty stomach. If you are low like this, that implies a failure of intrinsic factor. So you cannot rely on intrinsic factor to aid in absorption. The B12 then is passively absorbed in the small intestine...and presence of food acts as a sponge and reduces that. 5mg orally daily on an empty stomach should get you above 1000 in 3 months. I'd stay on it for at least 6 mos to a year since you have symptoms. Eventually you may be able to come down to 1000mcg (1mg) to hold at a good level. During the first year you will be building storage in the liver and also sending the B12 into the spinal fluid and brain. This is dependent on good serum concentrations, so you need to keep high for a while to accomplish that.

If you have some malabsorption issue in general, from inflammation like Crohn's disease or gluten sensitivity you probably will be low in other things. That is why diagnosis is important to show you what else you need to boost.

[svguy]

Sorry, mrsD. I can't seem to figure out private messaging in order to forward you the links. All the pm "hooks" described in the FAQ are not showing up on my screen. Maybe that functionality is restricted because I'm a newbie.