posted
That is a bummer. I've had a lot of numbness, but not that extreme. I'm also on lo-dose natrexone, 3 mg., increasing to 4.5 mg. tonite.
I am wondering if you aren't just herxing REAL badly. If I were you, I don't know if I would wait till your Dr. K. appointment. I think I would go to the ER. First call Dr. K's office,
explain you are in bad condition, would he agree to see you ASAP, or can he give you any advice for what to do until you see him. He might say go to ER.
If I had your symptoms I might take the prednisone for now if ER ordered it, as you will likely get some immediate relief until you can see Dr. K.
Hang in there. I'm sure you will get thru this crisis. This disease #%@&'s bigtime.
-------------------- 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
Sorry to hear this. I had those kinds of symptoms before I was diagnosed. I remember when the area around my eyes and my cheeks and nose was numb, among other parts of my body. It felt like I'd gotten a shot at the dentist's office.
It sounds like you never got rid of Lyme, since you say you did "passably well" during your years off of abx. So in the meantime, it's been growing back again, and you need to get back on antibiotics (abx).
I think you have to be completely symptom free before taking any long breaks from antibiotics. I would try to wait to see Dr. K, and in the meantime, start taking some herbs, including grapefruit seeds extract.
Posts: 975 | From California | Registered: Apr 2007
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I do get numbness and iciness and 3 years ago I got it as badly as you describe.This was while I still only had the CFS/ME diagnosis.
It did improve over several months and I took extra magnesium and also some R. Lipoic acid, but I don't know what impact that had.
If you have heavy metal problems, you should read up carefully on R and A Lipoic acid before taking it [see Andy Cutler's advice...sorry, no link]
I know it's very distressing, so hope you get some improvement soon,
I have the same symptoms as you (less the muscle twitching) but my loss of feeling in the neck/throat isn't as pronounced.
Last September, upon being (presumably) re-bitten --- facial/eyelid numbness, lower leg/shin numbness(noticed while shaving), throat numbness/swallowing weakness ensued-- along with other increased neuro and cognitive symptoms.
Off-and-on, I had boughts of my leg collapsing under me etc, but nothing that stayed.
Since sometime in May, I've had loss of feeling in my arms, head and hands that have remained(in addition with the above since Sept) and my dexterity has diminished although I can still function (fumbling, grasping/holding + gait issues).
I don't know much about neuro disorders except what I've been exposed to but it is reminscent of CIDP. Dr. K may send you off to Dr. Y for more (out-of-pocket) testing and IVIg.
The only LLneuro around where I am hasn't been taking on new patients.
I met someone who couldn't walk but after IVIg now can. But not everyone has positive results with it.
I'm sorry that I can't offer any ideas or advice. Like someone else said, try getting in touch with the LLMd and if not, the ER. Hang in there.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
Thanks so much for all the advice and support.
Still much the same. Did manage to see primary Dr. today to rule out stroke or anything commonly dangerous. Get to speak with my very busy LLMD Monday and also have a neuro appt to push for some more testing.
Just trying to relax and stay out of the ER if I can.
Thanks again.
Neville
Posts: 37 | From Kentucky USA | Registered: Jul 2004
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