Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Hi, Yes, this happens to me. I get numbness and tingling of my extremeties: peripheral neuropathy, also stabbing pains in toes and fingers, and now burning pains in my feet, legs, hands, forearms and sometimes chest or back or abdomen. Just recently after 1 1/2 years of lyme, I've had two incidents of numbness and tingling of my face, especially around the mouth. This is neuro lyme: my nerves are affected by the infection (lyme loves nerve cells), and/or damaged nerves from the increased toxic cytokins that the body makes trying to fight lyme, and/or possibily due to the body's own immune dysfunction--one theory has it that some people may develop an autoimmune reaction to the lyme infection that may cause ongoing neuropathy even after lyme is effectively treated. In any case, the numb hands is extremely common. Even my son who has lyme but doesn't have any real neurological symptoms has this happen to him. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 What do you do about the burning and numbness? ________________________________ From: Maureen Havenner <havenner@...> Sent: Mon, December 21, 2009 2:16:10 PM Subject: RE: [ ] Numb hands? Â Hi, Yes, this happens to me. I get numbness and tingling of my extremeties: peripheral neuropathy, also stabbing pains in toes and fingers, and now burning pains in my feet, legs, hands, forearms and sometimes chest or back or abdomen. Just recently after 1 1/2 years of lyme, I've had two incidents of numbness and tingling of my face, especially around the mouth. This is neuro lyme: my nerves are affected by the infection (lyme loves nerve cells), and/or damaged nerves from the increased toxic cytokins that the body makes trying to fight lyme, and/or possibily due to the body's own immune dysfunction- -one theory has it that some people may develop an autoimmune reaction to the lyme infection that may cause ongoing neuropathy even after lyme is effectively treated. In any case, the numb hands is extremely common. Even my son who has lyme but doesn't have any real neurological symptoms has this happen to him. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2009 Report Share Posted December 22, 2009 My LLMD has published positive findings using IVIG to treat the burning caused by Lyme induced peripheral neuropathy. Apparently the numbness is not helped with this treatment, only the burning sensations. You could try taking Quercetin to see if reducing inflammation helps. - Re: [ ] Numb hands? What do you do about the burning and numbness? ________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2009 Report Share Posted December 22, 2009 Thanks much, Maureen. Ya know, the worst part about it is just that it's a new and frequent reminder that these things are inside me. Do you (or anyone) know if the nerve stuff is reversible? ******* " Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. " - Viktor l From: Maureen Havenner <havenner@...> Subject: RE: [ ] Numb hands? Date: Monday, December 21, 2009, 3:16 PM Hi, Yes, this happens to me. I get numbness and tingling of my extremeties: peripheral neuropathy, also stabbing pains in toes and fingers, and now burning pains in my feet, legs, hands, forearms and sometimes chest or back or abdomen. Just recently after 1 1/2 years of lyme, I've had two incidents of numbness and tingling of my face, especially around the mouth. This is neuro lyme: my nerves are affected by the infection (lyme loves nerve cells), and/or damaged nerves from the increased toxic cytokins that the body makes trying to fight lyme, and/or possibily due to the body's own immune dysfunction--one theory has it that some people may develop an autoimmune reaction to the lyme infection that may cause ongoing neuropathy even after lyme is effectively treated. In any case, the numb hands is extremely common. Even my son who has lyme but doesn't have any real neurological symptoms has this happen to him. Maureen ------------------------------------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix.net/health/lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl.com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2009 Report Share Posted December 22, 2009 , I have late stage neuro lymes and the last few months my hands and feet have gone numb. They are pretty much like that all the time, and they get super cold and super hot very easily. The reflexes in the arch of my foot are totally gone too. Not sure if and when this will go away, but just thought I'd let you know that it is probably caused by lyme! Good luck in this horrible journey! Bridget > > Hello! > > I've had lots of hand pain with my Lyme & Co and still have it. But, these last few weeks, I have increasing numbness in both hands. They get that feeling of being asleep, for no reason, and I have to shake them to get rid of it. > > Anyone familiar with this, have any suggestions as to what might be going on? > > Thanks much! > > > > > > > ******* > " Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. " - Viktor l > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2009 Report Share Posted December 22, 2009 I don't do anything about the burning and numbness. I have been offered neurontin by my LLMD, but it is for symptom relief only and at this point, I don't want to mask the symptoms: I use them as an indicator of the progress I am or am not making. As far as the permanency of the neurological symptoms, I don't know. I'd love to hear from others on just this question. My symptoms never go away completely though, even when all my other symptoms improve, so it is possible that for me, the neurological symptoms might be an autoimmune response and here to stay--I can't tell yet. I hope not, because it does seem to be progressive: a little more painful and spreading to more parts of the body over time. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2009 Report Share Posted December 23, 2009 When I was treated for neuo-Lyme in 2001 the neurologist said that there may be some regeneration, but worst case scenario was that it would at least stop progressing. She was the only doc I could find who knew anything about Lyme, but is far from an expert. In 2004 I went back to the neuro, the rheumy and involved an ID doc who all agreed that " at least I'm not getting worse " and that whatever improvement I might have expected would have already occurred over the years since treatment. Oh, they did also imply that the nerve healing could take quite some time, which is why I waited years before getting reassessed. They say it's possible for nerves to regenerate, though it's usually a " work around " process where the brain finds ways to function by working around damaged areas. My docs were fully okay with treating me symptomatically and I still have to argue and struggle with them to get anyone to investigate things now: they all would rather just call it my " status quo " for being post-Lyme. I know many Lymies have this ongoing nerve damage that, while not progressing, seems to stick around. In my case though, I've pushed until we found pinched nerves (more permanent damage from that than Lyme), disc extrusions and, most recently, a movement disorder that has been contorting my spine and caused all sorts of mechanical issues in my spine. In short: I believe Lyme CAN cause this sort of long term damage. BUT, I'm also a believer in continuing to investigate and to strive for more definitive diagnosis. I've driven docs crazy with, " Yes, I understand that Lyme has caused nerve damage, but where exactly? How exactly? And how severe is it? " If they couldn't answer concisely, I pushed to make sure there wasn't something we'd missed. Over and over again, I was proven right about something else being wrong. I guess this is just a long " beware " : my nerve issues started when the Lyme disseminated, but huge chunks of the nerve problems were caused by something else that began about the same time. If it IS Lyme, at least the progression can be arrested. But, in my opinion, you should still keep a close eye on symptoms in case something more is happening. It's sure no fun! > > I don't do anything about the burning and numbness. I have been offered > neurontin by my LLMD, but it is for symptom relief only and at this point, I > don't want to mask the symptoms: I use them as an indicator of the progress > I am or am not making. > > As far as the permanency of the neurological symptoms, I don't know. I'd > love to hear from others on just this question. > > My symptoms never go away completely though, even when all my other symptoms > improve, so it is possible that for me, the neurological symptoms might be > an autoimmune response and here to stay--I can't tell yet. I hope not, > because it does seem to be progressive: a little more painful and spreading > to more parts of the body over time. > > Maureen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 I was treated with IV cefriaxone. If it weren't for the positive CSF tests, I'd now doubt that neuro-Lyme was ever the problem... but I did, so we know I had it. I thought many people here had commented to you that amoxicillin does not cross the blood-brain barrier... or did I misread that over and over? Back when I was Dx'ed, they told me cefriaxone was the " treatment of choice " for neuro-Lyme, but that insurance required positive test to pay for it. I know it doesn't make you feel any better but you can take comfort that a LOT of us live in daily agony and merely exist day to day. In my case I have other issues that compound things, but the end result is the same. My advice, not that I'm anywhere near being a professional anything, is always to remember that something else could be the issue. When did you last see a doc other than your LLMD? Or if you're convinced that neuro-Lyme is the issue, have you asked your LLMD why you're not being treated for it? Be direct, get direct answers. Best of wishes, > > > > > > I don't do anything about the burning and numbness. I have been offered > > > neurontin by my LLMD, but it is for symptom relief only and at this point, I > > > don't want to mask the symptoms: I use them as an indicator of the progress > > > I am or am not making. > > > > > > As far as the permanency of the neurological symptoms, I don't know. I'd > > > love to hear from others on just this question. > > > > > > My symptoms never go away completely though, even when all my other symptoms > > > improve, so it is possible that for me, the neurological symptoms might be > > > an autoimmune response and here to stay--I can't tell yet. I hope not, > > > because it does seem to be progressive: a little more painful and spreading > > > to more parts of the body over time. > > > > > > Maureen > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Long before I acquired lyme, I had a hot feeling and numbness in my feet and the heat in my hands. It was apparently caused by bartonella, which was not diagnosed until after I began the lyme treatment. The numbness in my feet decreased when I was treated with levaquin but the heat in my hands and feet continued. So far, with lyme the numbness and heat has not gotten any worse. Kathleen I've had lots of hand pain with my Lyme & Co and still have it. But, these last few weeks, I have increasing numbness in both hands. They get that feeling of being asleep, for no reason, and I have to shake them to get rid of it. Quote Link to comment Share on other sites More sharing options...
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