Can CIDP Cause HIGH Vitamin B-12 Value
August 24, 2018 at 10:31 am
My Vitamin B-12 is over 1500 with the norm being 180-914. AM wondering if this is a side effect of CIDP or peripheral neuropathy. Was originally diagnosed in 1994 and then “down-graded” years later to PN. But am concerned about the B-12 – any help would be appreciated. By the way, I am in my 80’s.
August 24, 2018 at 12:49 pm
Your condition is highly unlikely to be a side effect of CIDP. B12 is an important component in helping to regrow Myelin and repair neurological damage. Many doctors recommend high dosages to help treat CIDP and related conditions.
Can you take too much? Can it build up and become toxic? B12 is a water-soluble vitamin, it is not retained in the body. Excess B12 gets excreted by the kidney, unless both your kidneys stop functioning. You can take pro-biotics to help the kidneys flush B12 through the urine.
Here are some more detailed posts about B12 overdosing:
You can also do a keyword search in the forums here for “B12” and read what others have to say about it, but almost all the threads are talking about B12 from a deficiency standpoint.
August 24, 2018 at 1:06 pm
Thanks for your prompt reply – I do take probiotics!
August 26, 2018 at 5:11 am
Terri, I have CIDP and read your note with interest.
My B12 measured 3012 when I had a recent blood test, and was told there was no need for concern, but am wondering what I’m eating to cause this!
Surely a large amount should be beneficial for us! Aside from boosting nerve cell production, it assists the production of myelin. And appears to be the perfect vitamin for those with a neurological condition, especially CIDP or MS.
Vitamin B12 is important for proper nerve function and a deficiency can lead to nerve damage. But you and I already have nerve damage. None of this makes any sense at all…
I am about to check Jim-LA’s links. Thank you, Jim
August 26, 2018 at 10:19 am
Well – I guess too much is better than too little!
August 26, 2018 at 12:56 pm
Not all B12 is the same: there is Cyanocobalamin and Methylcobalamin, the latter being the preferred supplement because it is more natural and doesn’t contain any Cyanide molecules. Both are readily available in vitamin stores and on-line. The National Institute of Health published the following comparison:
Vitamin B12 is naturally found in animal products (meat, fish, milk, eggs, etc.). It is not found in vegetable products and some vegetarians with peripheral neuropathy may not be getting enough to help their bodies make repairs. Here is a list of the top 12 foods that contain B12:
August 26, 2018 at 11:29 pm
Thank you, Jim!
I have never eaten meat, fish, milk, cereal and eggs. I eat a limited diet as the nerves in my bowel do not function. So that super-high result is even more peculiar.
I am in hospital having my IVIG at the moment, so can check my previous results!
Do you have a neurological condition, Jim, or are you a medical man?
August 26, 2018 at 11:37 pm
Forgive me, I’m relatively new to this website, and have just found your “profile”. You’ve had a rough ride. I’m sorry to learn of that. I hope you have a good neurologist.
August 27, 2018 at 5:27 pm
Has anyone had an experience of being triggered/relapsing, from vitamins? I also wrote a post about the Myers Cocktail, ditto vitamins and minerals. At this very moment I can’t decide whether to go to emerg, bad day. But otherwise, I’m scheduled for intravenous vitamins …
On this thread, sounds like people have had only good experiences from vitamins.
August 29, 2018 at 4:02 pm
Jo Halber, A regimen of Myers Cocktail infusions has benefitted many suffering from Fibromyalgia, fatigue, hangovers and jetlag. I cannot find any studies using this method for treating GBS/CIDP. There have been Clinical Trials using other vitamins and they are listed under the following links:
A good summary about the Myers Cocktail and how it is administered can be found at the following link:
I found some informative statistics about the effectiveness of taking the treatment here:
Jo, if you decide to try this atypical therapy, please share your results with us so we can all benefit from your experience.
August 30, 2018 at 2:48 am
Jim-LA – thank you very much for writing, and for the links you shared – I checked them all out. From them, it seems there is limited work and experience to read about, so far, on what if any benefits there are to vitamins and supplements for GBS and CIDP.
Today I had the Myers Cocktail. There is an expression, “a swallow does not a Spring make” – so I shouldn’t read too too much into today’s experience. I’ll have to see how it works out over time.
That said – it was rather awesome. My symptoms after the Myer’s were the lowest today since this syndrome started for me.
My GBS (probably not CIDP, although I cycle and it changes a lot – so, to be determined) is less severe than many others, though it has been upsetting to me, not only making life hard but also frightful, off-putting, yucky to sense and live with. I was in emergency twice in the last week. So with the Myer’s today it was remarkable. I felt notably well afterwards. As a positive side effect, my sense of smell was sensitive afterwards, and remains so.
I had been skeptical and fearful about trying the Myers. No bad side effects, only some discomfort in the vein used, which sometimes happens and is not a problem to me. I get it now that the effect of intravenous vitamins can be different from swallowing them – the body and the stomach are a natural filter limiting the amount of vitamins and minerals allowed into the bloodstream.
I found the experience remarkable. It was encouraging to feel less dizzyness, less numbness, less clumsyness.
I do expect to do it again, but I’m spacing it out in time. I feel I have too many medical things to attend to, too many doctor’s appointments, all that – just too much. But I will definitely be learning more about the Myer’s Cocktail, and trying it again. Without doubt I feel it took me in the right direction.
Thank you very much again for writing 🙂
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