Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Kathy, My ex-husband went through treatment for cancer and he had a horrible time. He started out a very healthy man that ran 4 miles a day, within a month of chemotherapy, he was in a wheel chair. The story is a long, so I will not go into detail, however, he had extreme side affects from chemotherapy and had to quit, then we went to 2 a day radiation's, that nearly killed him but at some point he did get the chemo/cancer induced neuropathy. We were at MD Hospital at the time, stayed about six months or so. They told us he was terminal, this was over 3 years ago - so far so good. He does still hasthe neuropathy, and takes a medication, which I can't think of right now, I am sorry - my memory is not so great, but there use to be only one medication for it, and it really is not good for the body, however, neuropathy is so painful, that most will take it. Hoping for something else to come out. Also he is diabetic, and somehow the two are related, such as you have more of a chance developing the neuropathy if you are diabetic. What do they have her on? If you will look neuropathy up, I think it will tell you there is only one drug out there right now, but I could be wrong. At the time, some people couldn't take this drug, and then the only other option was allot of pain medication. I know you can maybe control with diet, but there is no cure. Hope this helps a little. May God Bless Marie -- Neuropathy Question Hi All, I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (and this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks, Kathy Bring photos to life! New PhotoMail makes sharing a breeze. Jackie Lacy Font: 2Peas Flower Pot New Creations IM Totally Engelbreit IM My Fotki Site Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Was it Neurontin? Davies <davies@...> wrote: Kathy, My ex-husband went through treatment for cancer and he had a horrible time. He started out a very healthy man that ran 4 miles a day, within a month of chemotherapy, he was in a wheel chair. The story is a long, so I will not go into detail, however, he had extreme side affects from chemotherapy and had to quit, then we went to 2 a day radiation's, that nearly killed him but at some point he did get the chemo/cancer induced neuropathy. We were at MD Hospital at the time, stayed about six months or so. They told us he was terminal, this was over 3 years ago - so far so good. He does still hasthe neuropathy, and takes a medication, which I can't think of right now, I am sorry - my memory is not so great, but there use to be only one medication for it, and it really is not good for the body, however, neuropathy is so painful, that most will take it. Hoping for something else to come out. Also he is diabetic, and somehow the two are related, such as you have more of a chance developing the neuropathy if you are diabetic. What do they have her on? If you will look neuropathy up, I think it will tell you there is only one drug out there right now, but I could be wrong. At the time, some people couldn't take this drug, and then the only other option was allot of pain medication. I know you can maybe control with diet, but there is no cure. Hope this helps a little. May God Bless Marie -- Neuropathy Question Hi All, I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (and this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks, Kathy Bring photos to life! New PhotoMail makes sharing a breeze. Jackie Lacy Font: 2Peas Flower Pot New Creations IM Totally Engelbreit IM My Fotki SiteJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi Kathy I too have a hubby who has neuropathy and uses what are called the "Network Antioxidants",, you can find a book called "the Antioxidant miracle" by lester packer,, we tried it and its all gone, as long as he take them,, but another thing you have to remember is that one MUST GET APPROVAL FROM THEIR OWN DOC,, FIRST AND FOREMOST,, ALWAYS,,Kathy Kostjal <happyhiker91214@...> wrote: Hi All, I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (and this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks, Kathy Bring photos to life! New PhotoMail makes sharing a breeze. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Kathy, I developed Neuropathic pain from severe arthritis. I am on neurontin for it. Now I have to be careful because Neurontin is an antiepileptic drug but it also causes liver damage. I am on 7 meds right now that my doc said to stay on until I get the results of my virus load and fibrosis. I am new to the diagnosis of Hep C, so I am trying to learn as much as I can. I have severe arthitis and fibromyalgia. The pain is awful, but now I have to be concerned about the meds I take for these. I have to get my GP, Rhuematologist, and Now the Gastroentologist to work together. Neurontin really helps the neuropathic pain. Pat > > Hi All, > I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (and this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks, Kathy > > > --------------------------------- > > Bring photos to life! New PhotoMail makes sharing a breeze. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 I also suffer from neuropathy and it's been diagnosed this week as lumbar plexitis. I may be treated with IVIG treatments - 5 transfusions, 5 days in a row. I have pain and numbness in the right leg now for over 2 months. I am on pain killers as well as Celebrex for my rheumatoid arthritis. My neurologist said that people with auto immune disorders such as RA are more prone to disorders involving neuropathy. I was tested for cryoglubulemia (sp?) which is associated with HCV and that was negative. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Dorothy I hope you get feeling better real soon! Hope your treatment works..I have never heard about autoimmune problems causing neuropathy but makes sense.. I have some sort of immune problem that has yet to be diagnosed.. so I will watch out for that.. I will try that AO protocol if it starts as that has totally eliminated that for my husband.. Dorothy <dorv@...> wrote: I also suffer from neuropathy and it's been diagnosed this week as lumbar plexitis. I may be treated with IVIG treatments - 5 transfusions, 5 days in a row. I have pain and numbness in the right leg now for over 2 months. I am on pain killers as well as Celebrex for my rheumatoid arthritis. My neurologist said that people with auto immune disorders such as RA are more prone to disorders involving neuropathy. I was tested for cryoglubulemia (sp?) which is associated with HCV and that was negative. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Dorothy I hope you get feeling better real soon! Hope your treatment works..I have never heard about autoimmune problems causing neuropathy but makes sense.. I have some sort of immune problem that has yet to be diagnosed.. so I will watch out for that.. I will try that AO protocol if it starts as that has totally eliminated that for my husband.. Dorothy <dorv@...> wrote: I also suffer from neuropathy and it's been diagnosed this week as lumbar plexitis. I may be treated with IVIG treatments - 5 transfusions, 5 days in a row. I have pain and numbness in the right leg now for over 2 months. I am on pain killers as well as Celebrex for my rheumatoid arthritis. My neurologist said that people with auto immune disorders such as RA are more prone to disorders involving neuropathy. I was tested for cryoglubulemia (sp?) which is associated with HCV and that was negative. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Pat Please ask your doc about the antioxidant protocol for your neuropathy,, thats what they use in Germany for it and we have been using it for my husband and it has worked wonderfully..pfried520 <pfried59@...> wrote: Hi Kathy,I developed Neuropathic pain from severe arthritis. I am on neurontin for it. Now I have to be careful because Neurontin is an antiepileptic drug but it also causes liver damage. I am on 7 meds right now that my doc said to stay on until I get the results of my virus load and fibrosis. I am new to the diagnosis of Hep C, so I am trying to learn as much as I can. I have severe arthitis and fibromyalgia. The pain is awful, but now I have to be concerned about the meds I take for these. I have to get my GP, Rhuematologist, and Now the Gastroentologist to work together. Neurontin really helps the neuropathic pain.Pat>> Hi All,> I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (and this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks, Kathy> > > ---------------------------------> > Bring photos to life! New PhotoMail makes sharing a breeze.>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Pat Please ask your doc about the antioxidant protocol for your neuropathy,, thats what they use in Germany for it and we have been using it for my husband and it has worked wonderfully..pfried520 <pfried59@...> wrote: Hi Kathy,I developed Neuropathic pain from severe arthritis. I am on neurontin for it. Now I have to be careful because Neurontin is an antiepileptic drug but it also causes liver damage. I am on 7 meds right now that my doc said to stay on until I get the results of my virus load and fibrosis. I am new to the diagnosis of Hep C, so I am trying to learn as much as I can. I have severe arthitis and fibromyalgia. The pain is awful, but now I have to be concerned about the meds I take for these. I have to get my GP, Rhuematologist, and Now the Gastroentologist to work together. Neurontin really helps the neuropathic pain.Pat>> Hi All,> I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (and this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks, Kathy> > > ---------------------------------> > Bring photos to life! New PhotoMail makes sharing a breeze.>Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Pat, I am wondering how do you get the doctors to work together??? I have a rheumatologist and two neurologists. I have rheumatoid arthritis, HCV and neuropathy. I am not being treated for the HCV, but am on RX for the RA as well as pain medication for the neuropathy. The rheumatologist has one opinion about mixing Celebrex with the pain RX and the 2 neurologists have a different opinion. It seems that each just wants to handle their own "problem" and I feel lost trying to tie it all together. I was told I need an internist to be my "gatekeeper" and I guess that's true, but I've never had one and don't know where to begin to find a good one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Dorothy Seems that we all have this problem,, its awful cuz they dont communicate with each other,, so WE HAVE TO BE OUR OWN ADVOCATES.. Learn all you can about what is going on with you and learn all you can about the different medications and how they might react with each other.. Its awful but this has become the "norm" for all of us these days.. hugs jaxDorothy <dorv@...> wrote: Pat, I am wondering how do you get the doctors to work together??? I have a rheumatologist and two neurologists. I have rheumatoid arthritis, HCV and neuropathy. I am not being treated for the HCV, but am on RX for the RA as well as pain medication for the neuropathy. The rheumatologist has one opinion about mixing Celebrex with the pain RX and the 2 neurologists have a different opinion. It seems that each just wants to handle their own "problem" and I feel lost trying to tie it all together. I was told I need an internist to be my "gatekeeper" and I guess that's true, but I've never had one and don't know where to begin to find a good one.Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 Hi bG. Someone on another list mentioned this device. I was reading about it and it sounds like it would be a good thing to have for people with neuropathy. But very expensive. Is this something we could make at home? My father has diabetic neuropathy and I was wondering if it would be hard or easy to build this. The lady that mentioned it said that it is working for her. The first link is to the technical page for doctors. From there, if you go to the FAQ page it has a bit more about the frequency it uses, etc. http://www.rebuildermedical.com/technical_specifications.php Samala, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Larry - I stopped Zerit over 6 years ago, and have problems with neuropathy more than ever. Unfortunately, it's not limited to Zerit alone, and perhaps not just to medication reactions. Other things to look at are myopathy (inflammation) and back problems that impact nerves. For instance, Lipitor can cause muscle pain and weakness that usually starts in the legs, as a side-effect. Have you looked into Lyrica? It can make you loopy, but once I adjusted to it, it's helped a lot with the leg pain and I'm functional. My bike is the best way to get around these days. I find it's important to get the exercise, or symptoms can be worse - especially mornings and night time. BG Neuropathy question Okay, because of the Zerit, I lost all nerve feeling below the ankle, 3 month loss of use of my left leg. Now what I need to know: some mornings I don't seem to be able to command my legs to stand and walk, it is better now, I can get them going, and over a few hours it is better, is this part of the Neuropathy thing? To me, this is not the hyperglycemia, it is just tuff telling the legs what to do. I use to be hugely athletic, but, after last year with Zerit and Viramune reaction, almost killing my liver, I have a very hard time with my legs. Gave up my bike as I can not gain control over the pedals. I really want to know if this is just still nerve damage from either drug. thanks. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Larry - I stopped Zerit over 6 years ago, and have problems with neuropathy more than ever. Unfortunately, it's not limited to Zerit alone, and perhaps not just to medication reactions. Other things to look at are myopathy (inflammation) and back problems that impact nerves. For instance, Lipitor can cause muscle pain and weakness that usually starts in the legs, as a side-effect. Have you looked into Lyrica? It can make you loopy, but once I adjusted to it, it's helped a lot with the leg pain and I'm functional. My bike is the best way to get around these days. I find it's important to get the exercise, or symptoms can be worse - especially mornings and night time. BG Neuropathy question Okay, because of the Zerit, I lost all nerve feeling below the ankle, 3 month loss of use of my left leg. Now what I need to know: some mornings I don't seem to be able to command my legs to stand and walk, it is better now, I can get them going, and over a few hours it is better, is this part of the Neuropathy thing? To me, this is not the hyperglycemia, it is just tuff telling the legs what to do. I use to be hugely athletic, but, after last year with Zerit and Viramune reaction, almost killing my liver, I have a very hard time with my legs. Gave up my bike as I can not gain control over the pedals. I really want to know if this is just still nerve damage from either drug. thanks. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2008 Report Share Posted August 18, 2008 BG, Aggreed, it can be more that one thing, but, before the Zerit and Viramune, I was still hiking and biking, and that all came to a fast halt, and I can not get back on the bike, had to give it away, can not control the pedals. Had my entire body MRI, looks okay, been to the chiropractor a lot, they seem to think it is okay with lots of xrays, thus, my doc reverts back to it being nerve damage, and suggests the zerit if not 3tc too. Not on Lipitor, but, I have read the same thing your stating. I was just wondering, that, if along with the pain, this crazy weakness, unable o control the legs was common. thanks, larry > > Larry - I stopped Zerit over 6 years ago, and have problems with neuropathy > more than ever. Unfortunately, it's not limited to Zerit alone, and perhaps > not just to medication reactions. Other things to look at are myopathy > (inflammation) and back problems that impact nerves. For instance, Lipitor > can cause muscle pain and weakness that usually starts in the legs, as a > side-effect. > > Have you looked into Lyrica? It can make you loopy, but once I adjusted to > it, it's helped a lot with the leg pain and I'm functional. My bike is the > best way to get around these days. I find it's important to get the > exercise, or symptoms can be worse - especially mornings and night time. > > BG > > > Neuropathy question > > > Okay, because of the Zerit, I lost all nerve feeling below the ankle, 3 > month loss of use of my > left leg. Now what I need to know: some mornings I don't seem to be able > to command my > legs to stand and walk, it is better now, I can get them going, and over a > few hours it is > better, is this part of the Neuropathy thing? > > To me, this is not the hyperglycemia, it is just tuff telling the legs what > to do. I use to be > hugely athletic, but, after last year with Zerit and Viramune reaction, > almost killing my liver, I > have a very hard time with my legs. Gave up my bike as I can not gain > control over the > pedals. I really want to know if this is just still nerve damage from > either drug. thanks. > > > ------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 Hi, with regard to muscle weakness associated with neuropathy, it does happen, my neurologist checks me out regularly for it...so far I have only lost the feeling in the right side of my right foot which does cause some problems but I expect more progressive nerve damage and muscle weakness over time....even with controlled HIV.....physiotherapy may help, but I would advise anyone concerned about the impact of neuropathy to seek specialist advice from a neurologist who deals with HIV. Best Wishes Quote Link to comment Share on other sites More sharing options...
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