Neurontin

[Guest guest]

, 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

[Guest guest]

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.

>

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[Guest guest]

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.

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[Guest guest]

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

>

>

>

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[Guest guest]

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.

>>

>>

>>

>>

>

>

>

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>

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[Guest guest]

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.

>

>

>

>

[Guest guest]

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

[Guest guest]

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.

>

>

[Guest guest]

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@...>

>

>>

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[Guest guest]

,

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,

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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,

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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@...

[Guest guest]

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

[Guest guest]

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

>

[Guest guest]

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@...

[Guest guest]

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@...

[Guest guest]

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.

>

[Guest guest]

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!

[Guest guest]

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.

_________________________________________________________