I have had Lyme for over 40 years now, I recently had a flair up and my brain CSF protein level was at 73 should be no greater 40. I also now have lesions on my posterior frontal lobe and on my pons. 12 years ago they were only on my anterior frontal lobe.This past spring my protein level was 58 and I did 2 months of Rocephin a 2 grams a day. So as you can see my CSF has increased.
To those who want gripe about lumbar punctures,I was diagnosed with Lyme by a Neurologist. Since then they use my CSF protein level as my benchmark.
I am currently doing a 6 month course of IV Rocephin and Flagyl. 2 grams Rocephin in the am, then 2grams in the evening along with 500mg of Flagyl.
I have been biting my tongue a lot when eating and have read this can happen with late stage Lyme. Does anybody know why? or how common it is?
I am also having drenching night sweats on my breaks while pulsing. 1st night is the worse. Once I am infusing again it stops.
Been pulsing for a month and was thinking of just stopping the pulsing and go straight through with no breaks.
any insights would be appreciated.
God Bless and Mercy for all,
Paul
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I recently slacked off on my pills, figuring maybe I was holding it down now enough. Wrong. Got gastroparesis/gastritis for the first time, along with acid reflux and food allergies. What a nightmare, to have some nasty new thing crop up after so long.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I've had tongue-biting too. I believe it's damage to the nerves to the mouth and tongue. So freakin PAINFUL!!
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I am being treated for it now I thought. Haha My ID wants to address the babesia parasites in my gut.
Yesterday my dentist said the tongues movement should be involuntary while chewing. He felt it is probably like my fasciculations and twitching everywhere in body.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Hypoglossal (XII) neuritis can be associated with a heaped up tongue on the unaffected side or deviation of the tongue on protrusion toward the abnormal side."
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