posted
I recently had 16 tubes of blood drawn for a neuro who after reviewing all the testing results stated to me that low B-2 or Riboflavin can cause neuropathy so if I just take 2 pills from walgreens or walmart a day my neuropathy should be much better in 6 months. A few years ago another neuro told me I had low B-12, so after many shots and pills (still taking btw) I am better but still have nagging neuropathy issues.. After over 4 years of abx I still have neuropathy.
I guess I just will always have it. It's just frustrating to hear yet another "reason" for my neuropathy that will not obviously fix it or help in any way. When I go back in 6 mo.'s and say it's still happening, he'll probably just put it down as neuropathy, cause not identified (or some such wording, I can't recall at the moment)
If I could get rid of the neuropathy, some of the other sx's are more bearable.
Thanks for listening to me rant. I know I haven't been on here lately, but we've been moving and SO, SO busy...finally got all the major stuff out, but still have to go back to the old place and clean up and stuff before the 1st. (ick)
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
symptoms of B2 deficiency are more related to the skin: dry, scaly skin, dry cracked lips, mouth sores, sore throats.
I don't understand why a neuro would associate B2 deficiency with neuropathy. Neuropathy is more indicative of B12 deficiency. Did he test for that in those 12 vials of blood?
Posts: 962 | From Charleston | Registered: Jan 2002
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posted
Do you take B complex in addition to the B12 or is that in your shots?
All the B's need to be in balance.
I was thinking I had read that migraines could be caused by low B1 or B2 -- forget which. Think that is discussed on lymeinfo.net (check the alternatives page).
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Yes, B vitamin deficiencies can cause migraine. Make sure you are taking the methylated or bioactive form of any you take.
I have B-vitamin deficiency as well as folate deficiency and migraine w/aura or complex migraine that almost resemble a stroke.
This is also linked to MTHFR which I have. I have 2 c copies or "homozygous C677T". Have you been tested for MTHFR?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
He did test B-12 and said it was marginally low, nothing to worry about. I take B-12 daily. I've had that issue in the past and have tried to keep it at bay. Meanwhile the neuropathy persists.
I did take a B complex for a while, then my LLMD took me off it, my B6 levels were getting too high.
Have had migraines in the past, but knock on wood, not for a few years now, at least for the most part.
I don't think I was tested for MTHFR, what is that exactly? I may have been, he really didn't specify what he tested for, only that the B2 was all he found.
I don't really think the B2 will help anything, but I think he was grasping for anything at this point. The previous neuro had said I had MS, then I went to get 2nd opinion and they said no, but found the B12 was very low, and put me on migraine drug. I didn't go back b/c they brushed off lyme. Then I saw LLMD for over 4 years and got some better; however, the neuro issues never got that much better.
I can't afford to travel to llmd anymore, so my new pcp sent me to neuro who ruled out MS and lyme and found neuropathy, but no cause. After extensive testing came up with b2 cause.
He told me to just go to walmart or walgreens and pick up b2 (riboflavin) and take 2 pills a day for 6 mo. and come back and see him then.
The walmart here in town doesn't have any and I won't be going to a larger town until the 30th. Of course I could order some from amazon, but I don't have much faith it will even help. I feel like he was just grasping for anything to try because he doesn't know what's causing it and isn't willing to find out. But, that's my guess. I may be jumping to conclusions, because of all the past times docs have misdiagnosed and mistreated, etc..not sure.
thanks for the responses.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
MTHFR is incredibly complicated but if you have it you can't convert folate or B12 to its' active form.
You are missing an enzyme that does that so they have to already be taken in they're active or methylated form. My B12 and folate were actually high b/c I wasn't converting them into their active form.
There is a blood test for MTHFR that checks for 2 forms, C677T and 1298C. There is further testing that can be done that with test for other variants but that is not covered by insurance. At least the C677T and 1298C is covered by insurance.
Some other issues linked to MTHFR are heart disease and stoke and miscarriage due to increased risk of blood clots. If you go to MTHFR.net there is a lot of info there.
Another big issue is difficulty detoxing. Migraine is also common with with this genetic defect.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
My daughter's neurologist said high doses of B2 can reduce migraines, so B2 isn't just about skin issues.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I'm on B2 and B6 for migraines. My doctor said the same thing about migraines being related to deficiency in these and my Metametrix testing said I needed these.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Garden, I did not say B2 is "just" about skin issues. I said B2 is "more related" to skin issues than to neuropathy, because they are the primary signs of deficiency.
I am fully aware that B2 supplements may relieve migraines, have read the studies. Migraines were not the issue here.
Posts: 962 | From Charleston | Registered: Jan 2002
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