posted
Has anyone had this!? It started almost two weeks ago...the front third of my tongue feels like I burned it on something hot...sort of numb, no taste capacity and or feeling really. Since I have major peripheral and central nervous system involvement, I am thinking that this is some sort of nerve problem/damage?
Has anyone had this and did it go away?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I had a burning tongue for 4 years. It got 75% better when I started supplementing iron and B vitamins, particularly B1, which I was very low in.
It still comes and goes. But it's so much better than it was. Some days it's completely gone.
It was so bad I used to have to suck on ice chips and I went to doctor after doctor after doctor about it and got the "Huh?" look every single time. They had no idea what it was or what to do, and every single doctor insisted I just needed PPI's for too much acid.
I knew that wasn't the problem.
Posts: 1142 | From South | Registered: Dec 2010
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posted
Very interesting as I am on bactrim and cipro now...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I had one of the gastro doctors that I work with tell me that bactrim can cause severe steven-johnson syndrome...however it is rare. On the other hand he thought that mild reactions like the one on my tongue also occur in the GI tract and can cause problems with the intestines and stomach as well.
posted
I had this symptoms about a year before I was Dx. Also, when I stuck my tongue out it pointed to the left.
This is one symptom that has completely resolved with treatment. Forgot I ever had it until I read this post.
Posts: 699 | From confusion | Registered: Jan 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Vitamin B12 deficiency (as well as other B-vitamin deficiencies) can sometimes cause tongue burning/numbness and peripheral neuropathy. I'd suggest getting your B-vitamin levels tested, and if the B12 is below 400, get a high potency sublingual supplement, preferrably in the form of Methylcobolamin (a much better and more useful form for the body than B12 in the more common and cheaper cyanocobolamin form).
I've known of people who had lost their sense of taste from lack of Vitamin B12...
It can take a few months for B12 to really make a big difference if the neuropathy is from B12 deficiency, and you may need injections in the begining to get your levels up.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It may be infection. A lot of syphilis patients have this as well as lesions on the tongue.
Or it could be pain from nerves waking up. My back did that...
Could be a lot of things...Including virus'.
I would try some C lozenges to see if it helps if viral as well as coconut oil.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Actually...this tongue thing began when I started eating four Tablespoons of coconut oil a day and some other supplements that my LLMD had me try...lots of fish oil and 2000 mg a day of vitamin. C. Coincidence? Bactrim side effect? Nerve damage? Disease progression?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Whoa...4 TBS. is a lot...I can stomach one...LOL
I am taking 1-2000 C and E.
Gosh it might be killing something in there. Do a google search of Syphilitic lesions and look at pics instead of web...lots of tongue in there.
I know many of us have syphilis lesions like, but something to take pics of and have your doc check out...
There is one poor woman that just joined a web site and being treated who looks like she has been beat in the face---and its Lyme +++.
Someone told me not to put too much in mouth to kill. Even toothpaste. They told me digestion starts in the mouth..So I have been using baking soda instead of toothpastes...
So you might want to swallow quick.
Don't know if its all that but doing what little I can to try.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
If the coconut oil is not organic, it may contain sulfites, which will deplete Vitamin B12.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Pinelady - I mix it with my grits in the morning...that seems to get most of it in for the day! Also...there are no lesions at all...just the "feeling".
Raz - Yep, it's organic! Expensive...but organic!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I spoke to my LLMD about it...he said that bactrim can cause all sorts of mouth issues...soreness, numbness, etc.
Well...he must be right on this...because I have been off of the bactrim for two weeks now...and my tongue is feeling about 95% back to normal!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Also...there are no lesions at all...just the "feeling". 
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