Lyme Disease Support Group

How long do you experience numbness? I am really having trouble functioning like this! This is day three of complete numbness. It was going off and on. Now most of the time I don't feel anything.

I am supposed to see all kinds of specialists. Is there really a point to all of this or would you just let it go? (MRI, MRA, Hand Specialist, Memory Doctor, etcetera)

Post edited by: IDoNotKnow, at: 01/21/2010 02:20 PM

Post edited by: IDoNotKnow, at: 01/21/2010 02:24 PM

keep the appts, they may turn up things not thought of earlier and NOT lyme related ....

are you a diabetic? you could be having neuropathy from it. i do.

You should keep the appts....Better to be safe than sorry..

Let us know how it goes.

Keep the appts if insurance is paying...but I probably would hold off on some if I was getting a bill.

I have had precisely the kind of hand numbness/fingers, etc. It more than likely will not be permanent.

My left ear went numb for over a month for no good reason other than that was the nerve the disease felt like messing with at the time.

Lymies get carpal tunnel symptoms also, but there is not much that can be reliably done about it anyway.

I do believe that this will probably go away with time.

I can also appreciate this is messing with your livelihood.

It is also possible that the more you stress on it, the worse it will seem. I know it works that way for me sometimes...if I let myself focus only on my pain, I tense up to cringe against it and only wind up making it worse for myself.

I know nerve issues are not quite the same but...

This is just another scary, annoying and in your case, dehabilitating symptom.

Let us know how you make out, hun. We are with you.

I have had numbness since Aug. '08. The areas of numbness have grown or advanced to more areas of my body. I cannot figure out any rhyme or reason for any of it. It started out on the L. side of my face and head and my R. arm and leg. Then some months later added my L. buttock and thigh. A little while later my whole L. leg. My tongue has numbness. I guess about 90% of my body has numbness now. The numbness fulctuates at any level, on a scale from 1-10, from a level 2-5 for no reason in particular. As long as I can move around and it doesn't immobilize me, I am fine. What sort of scares me, in the back of my mind, stays the thought of something I have heard that this sort of thing "could" develop into MS. I don't know, so it worries me a bit. With my tongue numbness, I have noticed I have to salt things more heavily to enjoy my food.

God Bless you,

Carol P.

A stab in the dark just to let you know...I started taking 1500 mg of C every day and when I upped it to that amount the numbness in my left leg/foot got much better over night it seemed.

It has come back for a few minutes at a time since.......but once I notice it I start moving around and it does go away again. I had numbness in this leg and foot for a year straight...

It got much worse ..more of an in depth numbness to the bone after I started Doxy but I started upping my C and I kid you not things started changing in my pain level and everything...

Oh just to add: I noticed my involuntary jerking of my quivering lips and eyes and nose that had been flaring TERRIBLY and ridiculous got quite a bit better right away too...

I think there is a connection personally...and I've read quite a bit recently about the importance in vitamin C when it comes to things like lyme..So yea I would say you could try C and C if it works

Post edited by: TaraT, at: 01/23/2010 11:24 AM

This is from another forum, but interesting since it relates to myelin sheath and numbness:

A form of bacteria seems to be the organic cause of multiple sclerosis, claims a Dr. Hoekstra, MD. Its tentative name - not yet widely accepted by other microbiologists - is Borrelia mylophora, so named because its characteristics seem to resemble those of Borrelia burgdorferi, the bacteria believed responsible for Lyme disease. In cases of multiple sclerosis, the myelin sheath covering the nerves gets eaten away by the immune system, explains Dr. Hoekstra. "That is exactly like the hunters' torches setting fire to the forest. Most of the destruction of the myelin sheath takes place from actions of the white blood cells and their antibodies. But their primary target is not the myelin sheath at all. It's the Borrelia mylophora bacteria, running around in the nervous system. B. mylophora has an extremely high affinity for the myelin sheath. It loves it." The successful use of doxycycline against B. mylophora was first verified by a physician in South Dakota who reasoned that the symptoms of MS (which he had) were suggestively similar to those of Lyme disease, which responds fairly well to doxycycline. After dosing himself for three months with the antibiotic, he was symptom free.

I've been on doxy and it definitely didn't cure me, but hard to say if the dosage or length of time was enough.

Post edited by: lindaca, at: 01/23/2010 12:44 PM