Topic: Wow! My nerves are finally coming back to life!!
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi All-
I'm a veteran, post-treatment lyme patient...
My B12 levels have always been in the normal to upper limits so I never thought I needed to supplement. Then, I read about people with pernicious anemia (people who don't have enough intrinsic factor to absorb B12 from food) having normal blood levels B12 levels but still being deficient. They had to have an MMA test and a homocysteine test to determine the deficiency.
So, I started supplementing with sublingual B12, folic acid, and (just recently) B6. Wow...it is intense...I have nerves sparking and shooting that I haven't felt in years...sometimes I even itch with it....My muscles are twitching and it's even causing some additional soreness in my muscles....it's crazy!!!
I read this can happen when you first start supplementing when you've been chronically low so I'm not too concerned....
Anyone know how long this intense/nerves coming back to life feeling will last????
Posts: 1155 | From Southeast | Registered: Oct 2005
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I don't know but good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't know either but I am glad your are having success. Niacinamide in high doses is supposed to help restore nerve function too.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Bugg,
I hate to rain on your parade, but the symptoms you are describing sound like side effects to me, especially the itching.
You can have allergic reactions to supplements, and possibly the fillers that are sometimes used. Check on the bottles also to see what other ingredients are there.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Thanks, you guys....I don't think it's a side effect as the itching really was just for one day...
I'm kind of surprised no other lyme patient has felt like this from taking B12 and the people on the pernicious anemia board have the same feelings....makes me wonder about how really deficient I've been.....Wow...
Thanks so much for the feedback and ideas!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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So the MMA and Homostein test, what levels do they have to be to positive for pernicious anemia?
What are some of the symptoms of this if you have it? I'm curious.
Thanks!
Posts: 247 | From Ca | Registered: Feb 2007
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hey Chootik-
There's lots of info about pernicious anemia on their boards if you're interested....The MMA and homocysteine tests have reference ranges of what is elevated (depends on the lab). These apparently are just a more accurate measure of true B12 deficiency. I didn't realize that your B12 bloodtests could be normal but you could be deficient in B12 until I read about many Celiacs and those with pernicious anemia who are unable to properly absorb B12...Many of these people said their B12 bloodtests were normal....
I just think it's important for lyme patients to be aware of this as I do think lyme interferes with proper absorption of nutrients/necessary vitamins...
Chootik, I haven't been tested for pernicious anemia. I just started supplementing with B12 sublingually on a more regular basis due to my concerns about proper nutrient absorption. I used to just take it about 3 times a week. Now, I'm taking 1000-2000 mcg a day sublingually....I can definitely feel the difference in taking this much on a regular basis...It is DEFINITELY impacting my nerves....
If you are low in B12 you can have numbness, tingling in the extremities, fatigue, swollen/red tongue, shortness of breath, weakness in legs, depression, crying very easily, stiffness, and twitching.....
Hope this helps.....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Journal Article published in June re: B12 deficiency:
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Wanted to make sure I added this onto this thread in case someone saw this later...
If you start supplementing heavily with B12 you will need to take more potassium....B12 will cause your body to utilize and/or excrete your potassium stores....You'll know if you need it as your back and shoulders, for ex, will become particularly tight/cramping...
Since I've upped my potassium intake, my shoulders feel so much better (just eating more bananas and drinking lots more oj)...
Posts: 1155 | From Southeast | Registered: Oct 2005
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