Guest guest Posted November 27, 1998 Report Share Posted November 27, 1998 , I was on neurotin for 5 months and didn't see really any side effects, maybe you are on meds that don't coincide well with it, check it out.....there seems to be a lot of docs prescribing meds that don't go well together nowadays, and it can be fatal. Hope you are feeling better! Hugs Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 1998 Report Share Posted November 29, 1998 Hi Deb, I have heard others complaining of that same symptom, but I wonder, does it really help the burning pains? Wonder if that drunk effect wears off? Well, people with Lyme cannot drink (I learned that the hard way) maybe this is how we can look like our friends come New Year's Eve, hopefully without a hangover! LOL!!! Marta >From: Dap8882@... > >Dear susan: >I tried Neurontin. I also felt like a drunk. The dose was too high. My >STUPID wan-a-be Lyme dr. started me on 400 mgs. After the first pill, I >wouldn't take another. The dr. gave me samples of 100mgs. and I didn't have >those side effects. Maybe only helped me a very little. Heck. if I want to >feel like drunk, I should at least have the fun of partying (just kidding).. > >Love to all >Debbie P. > >------------------------------------------------------------------------ >Help support ONElist, while generating interest in your product or >service. ONElist has a variety of advertising packages. Visit >/advert.html for more information. >------------------------------------------------------------------------ >/archives.cgi/ >/archives.cgi/Lyme-Docs >Email: -subscribeonelist >You may substitute " unsubscribe " , " digest " , or " normal " for >the word " subscribe " ( " normal " is the opposite of " digest " ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1998 Report Share Posted November 30, 1998 Isn't that something!!! Several of my doctors insisted I either take Neurontin or tegtetol and BOTH made me feel totally out of control. Allegedly it doesn't do this to people with seizures, but I guess it is a really hard nof non-seizure patients to tolerate. Did you find that it actually helped with the nerve pain? I gave up before I could find out! A Dap8882@... wrote: > From: Dap8882@... > > Dear susan: > I tried Neurontin. I also felt like a drunk. The dose was too high. My > STUPID wan-a-be Lyme dr. started me on 400 mgs. After the first pill, I > wouldn't take another. The dr. gave me samples of 100mgs. and I didn't have > those side effects. Maybe only helped me a very little. Heck. if I want to > feel like drunk, I should at least have the fun of partying (just kidding).. > > Love to all > Debbie P. > > ------------------------------------------------------------------------ > Help support ONElist, while generating interest in your product or > service. ONElist has a variety of advertising packages. Visit > /advert.html for more information. > ------------------------------------------------------------------------ > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or " normal " for > the word " subscribe " ( " normal " is the opposite of " digest " ) -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 1999 Report Share Posted March 19, 1999 Hi Marta, I'm taking 400mg of Neurontin three times a day and it is helping with the leg pains, cramping and overall body soreness. The burning is gradually getting better. It hasn't done anything for not being able to walk very far without passing out but I'm hopeful. It took less than a week at this level to feel relief. On Fri, 19 Mar 1999 04:56:48 -0500 " Marta McCoy " <mlmccoy@...> writes: >From: " Marta McCoy " <mlmccoy@...> > > > > >>From: SEAFRAN731@... >>Hello Amy: >>Hey girlfriend,.....I sure know how you feel!!!!! I am in the middle >>of severe marital problems....and my neuro symptoms have become >>much more pronounced.... >>....but the burning pains were becoming >>worse and it was to the point where I couldn't be touched with >>a feather without feeling severe pain! After taking the neurontin >>I found an improvement in the pain near the skin surface.... > >Hi Fran, > So sorry to hear you are having marital problems, you need that >like >another tick bite! >I wanted to mention that I also just started to take Neurontin, this >past >Friday, I was advised to take one per day for seven days, tomorrow, I >will >take 2 per day. I must say it hasn't quite helped yet. Does it take >a few >weeks before it works? I am anxious to try to cut down on my >Darvocets, I >am taking about 8 a day, and they have stopped working too. Anyway, >my >prayers are with you, hope you and your spouse can harbor this storm. >Hugs, >Marta > > > >------------------------------------------------------------------------ >If you like orange and blue, then you will love our new web site! > >Onelist: ing connections and information exchange >------------------------------------------------------------------------ >Please send privately messages unrelated to lyme. >/archives.cgi/ >/archives.cgi/Lyme-Docs >Email: -subscribeonelist >You may substitute " unsubscribe " , " digest " , or " normal " for >the word " subscribe " ( " normal " is the opposite of " digest " ) > ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 1999 Report Share Posted March 19, 1999 Marta, I have Lyme and Babesia, but not Erlichia. I haven't been tested for anything else. When I try to walk further than about thirty feet my legs stiffen up and I start to pass out so I have to constantly gauge how far I can walk and if there is a place to sit. I can't stand either. I have to sit down for a while and then I can attempt another thirty feet or so. One doctor said it might be related to the vagal nerve. No doctor seems to know the solution. One is beta blockers but I react to them. My current doctor put me on B-12 shots but I don't really want to feel better than I can handle. I haven't so far. If I'm going to feel good then I want to be able to go out and do things. The neurontin really helps with the leg pain. Sometimes I only take 800 mg a day if I'm just having a quiet day at home and not stressing myself out at Wal-Mart (those electric carts are a Godsend) or making that roundtrip to the doctor in Tampa 234 miles away. Take care, On Fri, 19 Mar 1999 15:19:53 -0500 " Marta McCoy " <mlmccoy@...> writes: >From: " Marta McCoy " <mlmccoy@...> > >Hi , > Wow, you are sure on a lot of this drug. I am glad to hear it is >helping >you with the pain so far. Why are you passing out so much? Is it >because >you are so weak? I have Lyme and HME....do you have other tick >diseases as >well? You may have mentioned this before in a prior post, but my Lyme >brain >cannot recall. Anyway, thanks for your response, and I do wish you >the >best. >Hugs, >Marta > > > >>From: " J. Swilley " <ljswilley@...> >> >>Hi Marta, >>I'm taking 400mg of Neurontin three times a day and it is helping >with >>the leg pains, cramping and overall body soreness. The burning is >>gradually getting better. It hasn't done anything for not being >able to >>walk very far without passing out but I'm hopeful. It took less than >a >>week at this level to feel relief. >> >> >> >> > > > >------------------------------------------------------------------------ >Have you visited our new web site? > >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ >Please send privately messages unrelated to lyme. >/archives.cgi/ >/archives.cgi/Lyme-Docs >Email: -subscribeonelist >You may substitute " unsubscribe " , " digest " , or " normal " for >the word " subscribe " ( " normal " is the opposite of " digest " ) > ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 1999 Report Share Posted March 19, 1999 Hi , Wow, you are sure on a lot of this drug. I am glad to hear it is helping you with the pain so far. Why are you passing out so much? Is it because you are so weak? I have Lyme and HME....do you have other tick diseases as well? You may have mentioned this before in a prior post, but my Lyme brain cannot recall. Anyway, thanks for your response, and I do wish you the best. Hugs, Marta >From: " J. Swilley " <ljswilley@...> > >Hi Marta, >I'm taking 400mg of Neurontin three times a day and it is helping with >the leg pains, cramping and overall body soreness. The burning is >gradually getting better. It hasn't done anything for not being able to >walk very far without passing out but I'm hopeful. It took less than a >week at this level to feel relief. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 1999 Report Share Posted March 19, 1999 Marta, I was on neurotin previously for 7 months before they knew it was lyme. It helped only very little. It makes me very woosey and it has not helped a bit this time. Maybe down the road it will. I am taking a high dose!! Hugs Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 Hi , I am so sorry to hear that Lyme and Babesia has affected you this way. This will teach me to not complain when my feet just hurt when I walk. How long do you figure you have had Lyme/Babesia? I hope & pray the doctors can figure out how to help you real soon. Hugs, Marta >From: " J. Swilley " <ljswilley@...> > >I have Lyme and Babesia, but not Erlichia. I haven't been tested for >anything else. When I try to walk further than about thirty feet my legs >stiffen up and I start to pass out so I have to constantly gauge how far >I can walk and if there is a place to sit. I can't stand either. I have >to sit down for a while and then I can attempt another thirty feet or so. > One doctor said it might be related to the vagal nerve. No doctor seems >to know the solution. One is beta blockers but I react to them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 Hi Marta, I was bitten by a tick in 1987 but not diagnosed until 1991(Lyme) and 1998 (Babesia) and my doctor said I may have other undiscovered diseases. I guess since nothing seems to be working, that may very well be the case. I just finished a week of Flagyl at 250mg three times a day and am starting a month of 500mg Flagyl three times a day. I don't know if this is an average dose or low or high dose. The nurse suggested I might Herx with the 250 mg but I didn't. I hope this does something. Not being mobile is especially bad. I walk just enough not to have a wheelchair but not enough to do anything. I can cook a meal if someone gets everything together for me but if I have to expend the effort getting it together then I don't have the strength to cook. Thanks for your concern, On Sat, 20 Mar 1999 04:03:59 -0500 " Marta McCoy " <mlmccoy@...> writes: >From: " Marta McCoy " <mlmccoy@...> > >Hi , > I am so sorry to hear that Lyme and Babesia has affected you this >way. >This will teach me to not complain when my feet just hurt when I walk. > How >long do you figure you have had Lyme/Babesia? I hope & pray the >doctors can >figure out how to help you real soon. >Hugs, >Marta > > >>From: " J. Swilley " <ljswilley@...> > >> ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 , Have you tried a round of zithromax and mepron? I just had my third round and its the best I have felt since July. Feel better, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 1999 Report Share Posted March 21, 1999 Hi Ijust read your post about the Mepron and zitromax. I don't understand what the third round means. How long does each round last? How long did it take before you started feeling better? Hope you continue to feel better. I am trying to decide whether or not I should try the Mepron. I do not have a positive babesia test but I have tried everything else and I still cant seem to get into another remmision. please write when you get a chance. -Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 1999 Report Share Posted March 21, 1999 Val, One round was three weeks. My doctors wanted to stay on 9 weeks since I had this since 1988. I started to fell better after 6 weeks (2 rounds). When I started it I had the WORST HERX!!! Intense and it lasted a couple of weeks. I just finished my third round this week. I'm doing much better since my relaspe in July. Hopefully I'll continue to get better. I'm also on biaxin injections. I saw that your on them. Do you have someone give them to you or do you go to the doctors every week. I hope you feel better. Have you been tested for babesia through Ignex? Were you tested for echriloisi? I tested postive for that also. Treatment is doxy. Feel better, christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 In a message dated 3/21/99 2:59:35 PM, Prinny328@... writes: << Val, One round was three weeks. My doctors wanted to stay on 9 weeks since I had this since 1988. I started to fell better after 6 weeks (2 rounds). When I started it I had the WORST HERX!!! Intense and it lasted a couple of weeks. I just finished my third round this week. I'm doing much better since my relaspe in July. Hopefully I'll continue to get better. I'm also on biaxin injections. I saw that your on them. Do you have someone give them to you or do you go to the doctors every week. I hope you feel better. Have you been tested for babesia through Ignex? Were you tested for echriloisi? I tested postive for that also. Treatment is doxy. Feel better, christine >> I was tested for babesia at Igenx and it was negative. I was tested for Ehricliosi in another lab and it was negative too. My doctor asked me if I wanted to go on the mepron soon and i said I don't know. I am already on Biaxin 1500mgs, Plaquinel 200mg and Biciliin injections. I now just started Augmetin as well,and in the past three days have felt worse with foggyness and exhaustion. I don't know if the Augmentin is causing a herx or just not doing anything. what was your herx like on the Mepron? I don't know what to do next. I have been on so many things since my relapse in July and have never been this bad. We'll if you can please explain to me what your herx was like on the mepron. Hope you stay better forever. -Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 In a message dated 3/22/99 10:36:55 AM Eastern Standard Time, ValP74@... writes: > << Val, > One round was three weeks. My doctors wanted to stay on 9 weeks since I had > this since 1988. I started to fell better after 6 weeks (2 rounds). When I > started it I had the WORST HERX!!! Intense and it lasted a couple of weeks. > I just finished my third round this week. I'm doing much better since my > relaspe in July. Hopefully I'll continue to get better. I'm also on biaxin > injections. I saw that your on them. Do you have someone give them to you > or > do you go to the doctors every week. I hope you feel better. Have you been > tested for babesia through Ignex? Were you tested for echriloisi? I tested > postive for that also. Treatment is doxy. > > Feel better, > christine >> HI Do you give yourself the biaxin injections; are they a long process? thank you lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 Hi liea, Actually my mother gives me the biaxin shots. It's not a long process. Some people prefer to go to the doctor's office to get the injections. I'm lucky I have someone comfortable enough to give them to me. Feel better, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 In a message dated 3/22/99 8:30:36 PM Eastern Standard Time, Prinny328@... writes: > Hi liea, > Actually my mother gives me the biaxin shots. It's not a long process. > Some > people prefer to go to the doctor's office to get the injections. I'm lucky > I > have someone comfortable enough to give them to me. > > Feel better, > > Hi : Thank you for your response; I've a few more questions---why are you on IM biaxin and not oral and is this the first abx that you have tried? thank you in advance lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 In a message dated 3/19/1999 4:54:09 AM Eastern Standard Time, mlmccoy@... writes: > I wanted to mention that I also just started to take Neurontin, this past > Friday, I was advised to take one per day for seven days, tomorrow, I will > take 2 per day. I must say it hasn't quite helped yet. Does it take a few > weeks before it works? I am anxious to try to cut down on my Darvocets, I > am taking about 8 a day, and they have stopped working too. Anyway, my > prayers are with you, hope you and your spouse can harbor this storm. > Hugs, > Marta Hello Marta: Sorry took me so long to respond....my eyes have been giving me problems....pain and visual disturbances in the left eye...and severe itchyness in both from my allergies! I am taking the Neurontin, one bid.....but I always forget to take the second pill in the morning.....my doctor stopped me on the Dilantin and I am sorry to say that the pain in my feet and legs has returned....I also have it now in my arms!!! It may be cause I am not taking the second pill regular....I have to call the doc and see if I can take the two at one time.... I can't really say if the neurontin is working.....when I first started taking it...I had been on the dilantin for months and taking both the dilantin and neurontin helped tremendously.....now since stopping the dilantin....(and not taking the second pill on a regular basis) could be why my pain has returned....and I am not happy about that either!!!!! Aches and burns like hell and prevents me from getting to sleep!!! How are you doing on the neurontin now??? love ya, Fransea NJ Seashore Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Hello Fran and Marta & Everyone: I just read your emails in reference to taking Neurotin. I am taking one neurotin, 3 times a day for my lyme disease caused " periferal nerve damage " in my hands and my feet. For me it takes for me to be on this regimend of neurotin faithfully at a minimum at least a full week before the Neurotin works on me. I absolutely find it " bearable " the nerve damage while I am on the Neurontin. I presently stopped taking the Neurontin, until my testing is done, probably will be a few more weeks so I can " first hand " tell the doctor how the periferal nerve damage is effecting my hands and feet, and should I get the Muscle nerve biopsy, I wanted to make sure that the Neurotin had no effect on the results of the biopsy. I am realistic, and know that after all the testing is completed, that I will be on the Neurotin, and that it does " work for me " in easing the pain so that " life is bearable " with the nerve damage. I am in the process of seeing if I am a " candidate " to getting a Muscle Nerve biopsy on my leg due to the periferal nerve damage. I want to get this done in order to see if the doctor can find out more about my nerve damage and also, as " documentation in my 3rd Appeals hearing " against my health insurance carrier so that, hopefully, I can get them to pay for my IV antibiotic therapy from 1998. This is in addition to my (2)Brain Spect Scans, my Cognitive therapy sessions for short term memory loss, various tests EMG, bloodwork by my Neurologist. I know, I am just one of many of us, in all the " various testings and probing " that our insurance carriers are making us do in order to get them (insurance company) to pay our Lyme Literate doctors in their " deemed medically necessary " treatment of us for Lyme disease. Thanks for listening, Alan Farmhaven2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 I too take neurontin. Qid (4x a day). Have been for over a year now for my MS. It has worked wonders for me most of the time. I always know if I've missed more than one dose and if I miss 1 dose several days in a row my legs and feet really let me know. It was hard to remember at first to get the 2 middle of the day doses taken but the difference it makes has been a big incentive to work at remembering too get all of my doses taken. I am also on baclofen for spasms and cramping of my legs. I've just worked up to 4 a day but can't say if it is doing much yet. Any lymies out the using baclofen? What have been your experiences with it? Thanks, Janice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Hi Fransea, I guess I am doing ok on it, I am now up to 100mg three times a day. I also am on a new pain med, Vicoprofen, something is working but not sure which. I hate to admit when I am doing good, because when I do, the next day I relapse. But if you look at all the postings I did today, you would guess I am doing pretty good! I sure am gabby. Hope you are feeling better, do you take anything for your seasonal allergies? I am on Zyrtec and it is so much better than Claritin was for me. Hugs, Marta > From: SEAFRAN731@... > > In a message dated 3/19/1999 4:54:09 AM Eastern Standard Time, > mlmccoy@... writes: > > Hello Marta: > Sorry took me so long to respond....my eyes have been giving > me problems....pain and visual disturbances in the left eye...and > severe itchyness in both from my allergies! > > I can't really say if the neurontin is working.....when I first > started taking it...I had been on the dilantin for months and > taking both the dilantin and neurontin helped tremendously.....now > since stopping the dilantin....(and not taking the second pill > on a regular basis) could be why my pain has returned....and > I am not happy about that either!!!!! Aches and burns like hell > and prevents me from getting to sleep!!! > > How are you doing on the neurontin now??? > > love ya, > Fransea NJ Seashore > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Hi Alan, I am pretty sure it was at your suggestion that I asked my doctor for Neurontin, thanks for that. I was reading the Lyme newsgroup today, and DeminN@... wrote that she is on 3600mg of Neurontin, and was once on 4500mg! Wow, my 300mg seems so miniscule next to that dosage. I must say the pain in hands and legs has subsided, but I am also on a new pain med, so hard to tell which is helping, probably both. So sorry that you have to go through all that testing etc. for your dumb insurance company, it is so unfair what they put us through. Do you still get pins and needles in your hands and feet, even though on Neurontin? I do, but that is only uncomfortable, not so painful as it could be. Damn Lyme really does a number on the body doesn't it? Good luck with the tests, please keep us posted. Hugs, Marta > > I presently stopped taking the Neurontin, until my testing is done, > probably will be a few more weeks so I can " first hand " tell the doctor how > the periferal nerve damage is effecting my hands and feet, and should I get > the Muscle nerve biopsy, I wanted to make sure that the Neurotin had no > effect on the results of the biopsy. I am realistic, and know that after all > the testing is completed, that I will be on the Neurotin, and that it does > " work for me " in easing the pain so that " life is bearable " with the nerve > damage. > > I am in the process of seeing if I am a " candidate " to getting a Muscle > Nerve biopsy on my leg due to the periferal nerve damage. I want to get > this done in order to see if the doctor can find out more about my nerve > damage and also, as " documentation in my 3rd Appeals hearing " against my > health insurance carrier so that, hopefully, I can get them to pay for my IV > antibiotic therapy from 1998. This is in addition to my (2)Brain Spect > Scans, my Cognitive therapy sessions for short term memory loss, various > tests EMG, bloodwork by my Neurologist. I know, I am just one of many of > us, in all the " various testings and probing " that our insurance carriers are > making us do in order to get them (insurance company) to pay our Lyme > Literate doctors in their " deemed medically necessary " treatment of us for > Lyme disease. > > Thanks for listening, > Alan > Farmhaven2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 Marta Thanks for responding to my email and I am glad that the Neurotin is helping you, because no one should have to go thru all that pain when there is something available that can be helpful. I went off the Neurotin on my own, am putting up with the pain and discomfort so that there is no possibility at all, that being on Neurotin will have any effect on the upcoming testing that I will be going thru. If it weren't for the Appeals hearings, then I would not have any doubt that I would just be on the Neurotin. My Lyme Literate physician agrees also that there is a possibility that the Neurotin might have an effect in the testing too. I will definitely keep you posted on how I make out. Take care, Alan Farmhaven2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Please do keep us posted, Alan, I hope all this testing etc, is done real soon, you must be feeling pretty miserable, Hugs, Marta > From: FarmHaven2@... > > Marta > > Thanks for responding to my email and I am glad that the Neurotin is > helping you, because no one should have to go thru all that pain when there > is something available that can be helpful. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 Jodi- re: Neurontin......Great Med but it gave me wicked headaches! Luckily, I can tolerate a'cousin' of Neurontin(same drug category) called Lamictal. Good Pain Relief for the burning neuropathic pain. I too was taking it in conjunction w/flexaril. Then I switched to Soma,then finally to Baclofen...la...la....la...better living through pharmacology! Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 1999 Report Share Posted April 27, 1999 I have had the worse MCS since becoming ill. For the past 8 days I have been taking Neurontin (Dr. Seastrunks protocol). My MCS have decreased dramatically. In addition, my brain fog has lifted and my vision has improved. For those interested in Dr. Seastrunks protocol for CFIDS/MCS using Neurontin the web site is http://www.geocities.com/HotSprings/6028/nfaq.htm. _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
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