Re: still searching

[Guest guest]

Dear Sheila:

I have to rush out the door...are you aware that certain Lyme protocols state

that 600-800mg should be taken? I believe that people with acne take more

than 100mg daily. For your best interests, please look up some of the

protocols that are written/established. At this rate, you could end up a

" lifer, " which I think anyone would ideally try to avoid the maintenance

route.

Sincerely,

Annie

[Guest guest]

Hello Everyone

I've been on doxycycline now for about 2 weeks (100mg). Don't seem to have

any drastic side effects or Herxs yet. The only problem is the ongoing

gastritis, probably exacerbated by the doxy, and generalised fibromyalgia

pain which is now severe. I can no longer take non-steroidal

anti-inflammatories because of the effect on my gastric system. I follow al

the advice about taking with a meal etc. I am taking omazeprole antacid for

the stomach pain, but really need something for the other pain as well. My

GP says the pain under my shoulder blades and under both sides of my ribs is

nothing to do with gallbladder disease or gastritis. She has no idea what

may be causing it. I have heard people in the group talk about Neurontin.

What is this and can anyone say whether it is useful for muscle, joint and

nerve pain. Are there any serious side effects that should make me think

twice about using it?

sheila

[Guest guest]

<snip>. I am taking omazeprole antacid for

the stomach pain, but really need something for the other pain as well.

My

GP says the pain under my shoulder blades and under both sides of my ribs

is

nothing to do with gallbladder disease or gastritis. She has no idea what

may be causing it. I have heard people in the group talk about Neurontin.

What is this and can anyone say whether it is useful for muscle, joint and

nerve pain. Are there any serious side effects that should make me think

twice about using it?

sheila

----------------------------------------

Same thing happened to me Sheila. Stomach could not tolerate non-steriodial

pains meds, plain tylenol didn't work. Ended up on Tylenol #3 which had

codeine in it. I think the back pain around the middle ribs is mainly

muscle pain and sometimes this spreads down into lower abd. area. Flexeril

really helps these muscle groups that feel like they are in contraction a

lot of the time. Can't stand something binding at all around my mid area

either. This has passed but I still have back problems. Helps to take pain

med on a regular schedule and rest periods. I know what works for some may

not work for others so you play around to find what does work.

Take care,

Barb

[Guest guest]

I saw my specialist today. Doom and Gloom. He was the man who said he

would raise my doxycycline from a starter dose of 100 mg to 'a substantial

dose' for about 3 months. He seemed to have forgotten what he had

discussed. He now says that 100 mg is the only safe dose he usually is

prepared to prescribe! He was very concerned that 400 - 600 mg would be

'poisonous' and caused liver or kidney failure. Does anyone know of any

case where this has happened? He has already told me that he rarely sees

Lyme and usually only new cases. I decided to put him 'on the spot' and

asked what he usually prescribed for patients with chronic syphillis. He

replied 'Oh well in that case it would have to be around 600 mg of doxy'. I

asked why he would treat 2 chronic spyrochetal diseases differently and he

looked perplexed and said he hadn't looked at it that way before. I felt

very angry but kept my cool and asked him if he had read the Burruscano

research that I had given him 2 months ago. He replied that he was too busy

tending to seriously ill people in the intensive care unit. I replied that

while I was very mindful that their immediate needs were greater than mine,

I had been ill for 22 years and this was probably my only decent chance to

get effective treatment. He agreed to raise the dose to 200 mg as long as I

have regular blood tests for liver and kidney problems. I asked him about

IV rocephin or claforan and described the kind of therapies that Dr B uses

in USA. He said he would 'ask' the hospital authorities if he was allowed

to prescribe these drugs, but he had not heard of claforan before. I

replied that it was available in the local chemist because I had checked, so

it must be in common usage. I felt I had him backed into a corner and

realised that I could be making a name for myself as a problem patient, but

I am getting desparate now. I am 50 years old and ill since my late 20's.

I feel I am deteriorating a little every few months now and am between a

rock and a hard place and the pain is getting too much for me now. This

treatment is my only hope of any relief. Why do I have to battle doctors

too. It really is too much. I counted six people in the consulting room

including myself. Most of them were doing something else, unconnected to my

visit. I did not know any of them except the consultant and was not

introduced. I know I have hit rock bottom tonight, I did not seem to matter

to them. I was just another body to be processed. My daughter said to me

tonight, 'I've never known you when you were well mummy' and sometimes I

wonder if she ever will. Sheila

[Guest guest]

I saw my specialist today. Doom and Gloom. He was the man who said he

would raise my doxycycline from a starter dose of 100 mg to 'a substantial

dose' for about 3 months. He seemed to have forgotten what he had

discussed. He now says that 100 mg is the only safe dose he usually is

prepared to prescribe! He was very concerned that 400 - 600 mg would be

'poisonous' and caused liver or kidney failure. Does anyone know of any

case where this has happened? He has already told me that he rarely sees

Lyme and usually only new cases. I decided to put him 'on the spot' and

asked what he usually prescribed for patients with chronic syphillis. He

replied 'Oh well in that case it would have to be around 600 mg of doxy'. I

asked why he would treat 2 chronic spyrochetal diseases differently and he

looked perplexed and said he hadn't looked at it that way before. I felt

very angry but kept my cool and asked him if he had read the Burruscano

research that I had given him 2 months ago. He replied that he was too busy

tending to seriously ill people in the intensive care unit. I replied that

while I was very mindful that their immediate needs were greater than mine,

I had been ill for 22 years and this was probably my only decent chance to

get effective treatment. He agreed to raise the dose to 200 mg as long as I

have regular blood tests for liver and kidney problems. I asked him about

IV rocephin or claforan and described the kind of therapies that Dr B uses

in USA. He said he would 'ask' the hospital authorities if he was allowed

to prescribe these drugs, but he had not heard of claforan before. I

replied that it was available in the local chemist because I had checked, so

it must be in common usage. I felt I had him backed into a corner and

realised that I could be making a name for myself as a problem patient, but

I am getting desparate now. I am 50 years old and ill since my late 20's.

I feel I am deteriorating a little every few months now and am between a

rock and a hard place and the pain is getting too much for me now. This

treatment is my only hope of any relief. Why do I have to battle doctors

too. It really is too much. I counted six people in the consulting room

including myself. Most of them were doing something else, unconnected to my

visit. I did not know any of them except the consultant and was not

introduced. I know I have hit rock bottom tonight, I did not seem to matter

to them. I was just another body to be processed. My daughter said to me

tonight, 'I've never known you when you were well mummy' and sometimes I

wonder if she ever will. Sheila

[Guest guest]

Good for you Sheila that you could come back at that doctor. I laughed when

I saw the syphilis info, not really funny one bit, but I thought yeah, go

get em! I don't think I ever think fast enough in situations like that and

then I come home and go over what I should have said and done. I think you

did pretty good.

It is pitiful that doctors won't take time to learn or use it as an excuse.

Maybe some over your way need to be summoned to court? Or is that even

possible in the health care system you have? Thank heavens you have your

little one to keep you going!

Are you anywhere near Somersetshire? Somerset Co? I do genealogy, well I

did but slowed done trying to keep up with LD activism. Anyway my grandma

folks originated in that area. Petheram. I some day would like to come over

and see that area. People have been so nice to send me pictures of the

church and some of the old tombstones of ancestors. Really neat. It is a

nice diversion from LD thinking.

Barb

[Guest guest]

Hello Barb,

Sorry, I am at the other end of Britain - in the cold north of the Peak

District. I hear Somerset is beautiful, orchard country, where I would love

to visit someday. Thank you for responding. A friendly voice is much needed

at the moment.

sheila

>Are you anywhere near Somersetshire? Somerset Co? I do genealogy, well I

>did but slowed done trying to keep up with LD activism. Anyway my grandma

>folks originated in that area. Petheram. I some day would like to come over

>and see that area. People have been so nice to send me pictures of the

>church and some of the old tombstones of ancestors. Really neat. It is a

>nice diversion from LD thinking.

>

>Barb

>

>

>------------------------------------------------------------------------

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>1/4473/8/_/484634/_/959744439/

>------------------------------------------------------------------------

>

>Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

>Easy Reference:

>Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

>Please send messages not related to Lyme disease to

-Offtopicegroups

>

>Archives can be accessed at lyme-aid

>

>Please visit the chat room at chat/lyme-aid

>

>

>

[Guest guest]

Hi Sheila.

So sorry to respond so late to this mail. I just wanted to tell you how

much I admire the gutsy way you stood up to the doctor you saw on May 30th.

You really did a good job backing him into a corner and showing him you knew

more about this disease than he did. I am glad you got the dosage

increased, I sure hope you can get him to approve IV treatment on your next

visit. I guess the only way to get treatment is to fight like hell. I too

hope your daughter gets to know a well mom one of these days, with your

attitude and willingness to fight for yourself it is inevitable,

Hugs,

Marta

From: Sheila Darbyshire <sheila-e@...>

>I saw my specialist today. Doom and Gloom. He was the man who said he

>would raise my doxycycline from a starter dose of 100 mg to 'a substantial

>dose' for about 3 months. He seemed to have forgotten what he had

>discussed. He now says that 100 mg is the only safe dose he usually is

>prepared to prescribe! He was very concerned that 400 - 600 mg would be

>'poisonous' and caused liver or kidney failure. Does anyone know of any

>case where this has happened? He has already told me that he rarely sees

>Lyme and usually only new cases. I decided to put him 'on the spot' and

>asked what he usually prescribed for patients with chronic syphillis. He

>replied 'Oh well in that case it would have to be around 600 mg of doxy'.

I

>asked why he would treat 2 chronic spyrochetal diseases differently and he

>looked perplexed and said he hadn't looked at it that way before. I felt

>very angry but kept my cool and asked him if he had read the Burruscano

>research that I had given him 2 months ago. He replied that he was too

busy

>tending to seriously ill people in the intensive care unit. I replied that

>while I was very mindful that their immediate needs were greater than mine,

>I had been ill for 22 years and this was probably my only decent chance to

>get effective treatment. He agreed to raise the dose to 200 mg as long as

I

>have regular blood tests for liver and kidney problems. I asked him about

>IV rocephin or claforan and described the kind of therapies that Dr B uses

>in USA. He said he would 'ask' the hospital authorities if he was allowed

>to prescribe these drugs, but he had not heard of claforan before. I

>replied that it was available in the local chemist because I had checked,

so

>it must be in common usage. I felt I had him backed into a corner and

>realised that I could be making a name for myself as a problem patient, but

>I am getting desparate now. I am 50 years old and ill since my late 20's.

>I feel I am deteriorating a little every few months now and am between a

>rock and a hard place and the pain is getting too much for me now. This

>treatment is my only hope of any relief. Why do I have to battle doctors

>too. It really is too much. I counted six people in the consulting room

>including myself. Most of them were doing something else, unconnected to

my

>visit. I did not know any of them except the consultant and was not

>introduced. I know I have hit rock bottom tonight, I did not seem to

matter

>to them. I was just another body to be processed. My daughter said to me

>tonight, 'I've never known you when you were well mummy' and sometimes I

>wonder if she ever will. Sheila

[Guest guest]

Hello Marta

Lovely to hear from you again. I hope you are feeling a little better than

last time we spoke. I think about you often and hope you are able to enjoy

life. As to being gutsy, and standing up to my doctor, hmmm, I think I may

have talked my way out of the consulting room and back where I started. If

he has taken offence, I may not have his support much longer. But, hey,

I've taken a lot of rubbish from so called doctors over the years and the

worm has finally turned. I promised myself that from now on, I go in to

each consultation armed with knowledge and the support of this group, and

hopefully that will see me through.

Take Care. Sheila

Re: [ ] Re: Still Searching

>Hi Sheila.

> So sorry to respond so late to this mail. I just wanted to tell you how

>much I admire the gutsy way you stood up to the doctor you saw on May 30th.

>You really did a good job backing him into a corner and showing him you

knew

>more about this disease than he did. I am glad you got the dosage

>increased,

[Guest guest]

Hi Sheila.

So sorry to respond so late to this mail. I just wanted to tell you how

much I admire the gutsy way you stood up to the doctor you saw on May 30th.

You really did a good job backing him into a corner and showing him you knew

more about this disease than he did. I am glad you got the dosage

increased, I sure hope you can get him to approve IV treatment on your next

visit. I guess the only way to get treatment is to fight like hell. I too

hope your daughter gets to know a well mom one of these days, with your

attitude and willingness to fight for yourself it is inevitable,

Hugs,

Marta

From: Sheila Darbyshire <sheila-e@...>

>I saw my specialist today. Doom and Gloom. He was the man who said he

>would raise my doxycycline from a starter dose of 100 mg to 'a substantial

>dose' for about 3 months. He seemed to have forgotten what he had

>discussed. He now says that 100 mg is the only safe dose he usually is

>prepared to prescribe! He was very concerned that 400 - 600 mg would be

>'poisonous' and caused liver or kidney failure. Does anyone know of any

>case where this has happened? He has already told me that he rarely sees

>Lyme and usually only new cases. I decided to put him 'on the spot' and

>asked what he usually prescribed for patients with chronic syphillis. He

>replied 'Oh well in that case it would have to be around 600 mg of doxy'.

I

>asked why he would treat 2 chronic spyrochetal diseases differently and he

>looked perplexed and said he hadn't looked at it that way before. I felt

>very angry but kept my cool and asked him if he had read the Burruscano

>research that I had given him 2 months ago. He replied that he was too

busy

>tending to seriously ill people in the intensive care unit. I replied that

>while I was very mindful that their immediate needs were greater than mine,

>I had been ill for 22 years and this was probably my only decent chance to

>get effective treatment. He agreed to raise the dose to 200 mg as long as

I

>have regular blood tests for liver and kidney problems. I asked him about

>IV rocephin or claforan and described the kind of therapies that Dr B uses

>in USA. He said he would 'ask' the hospital authorities if he was allowed

>to prescribe these drugs, but he had not heard of claforan before. I

>replied that it was available in the local chemist because I had checked,

so

>it must be in common usage. I felt I had him backed into a corner and

>realised that I could be making a name for myself as a problem patient, but

>I am getting desparate now. I am 50 years old and ill since my late 20's.

>I feel I am deteriorating a little every few months now and am between a

>rock and a hard place and the pain is getting too much for me now. This

>treatment is my only hope of any relief. Why do I have to battle doctors

>too. It really is too much. I counted six people in the consulting room

>including myself. Most of them were doing something else, unconnected to

my

>visit. I did not know any of them except the consultant and was not

>introduced. I know I have hit rock bottom tonight, I did not seem to

matter

>to them. I was just another body to be processed. My daughter said to me

>tonight, 'I've never known you when you were well mummy' and sometimes I

>wonder if she ever will. Sheila

[Guest guest]

Hello Marta

Lovely to hear from you again. I hope you are feeling a little better than

last time we spoke. I think about you often and hope you are able to enjoy

life. As to being gutsy, and standing up to my doctor, hmmm, I think I may

have talked my way out of the consulting room and back where I started. If

he has taken offence, I may not have his support much longer. But, hey,

I've taken a lot of rubbish from so called doctors over the years and the

worm has finally turned. I promised myself that from now on, I go in to

each consultation armed with knowledge and the support of this group, and

hopefully that will see me through.

Take Care. Sheila

Re: [ ] Re: Still Searching

>Hi Sheila.

> So sorry to respond so late to this mail. I just wanted to tell you how

>much I admire the gutsy way you stood up to the doctor you saw on May 30th.

>You really did a good job backing him into a corner and showing him you

knew

>more about this disease than he did. I am glad you got the dosage

>increased,

[Guest guest]

In a message dated 00-06-06 18:13:53 EDT, you write:

<< I promised myself that from now on, I go in to

each consultation armed with knowledge and the support of this group, and

hopefully that will see me through.

Take Care. Sheila >>

Dear Marta & Sheila,

MARTA - so glad to see you posting. I think of you & pray for you ( & ALL)

EVERY DAY!

Sheila - WAY TO GO! I do the same thing - armed with info - most docs ( &

vets) don't like it - even when you print them a copy with site references -

but so be it. Medicine is changing for the better because we are all more

informed about our treatments. After all - it is YOUR body & YOU are paying

DOC to treat you - not the other way around! VBG! (Sometimes they get

confused on this issue...) So - the choices should be YOURS - not DOCS!

Blessings,

Chris

[Guest guest]

I'm trying to cope with the doxycycline but it seems to be knocking me down

emotionally. Added to this my left knee and ankle have given me constant

pain for the past 2 weeks. Does anyone know if doxy has a depressive

effect? Its only 200 mg but I feel so low. Maybe its because I'm not

taking the NSAIDS anymore and the pain has increased. I read on one of the

sites that 'there is no cure for long term Lyme' and wondered why am I going

through all this if its not going to work. Its been so many years now - am

I wasting my time, and getting my hopes up for nothing. I have to go for

this wretched Spinal Tap next week. I'm only going really because I'm

scared the doctor won't be willing to continue the treatment if I don't

co-operate. Sorry to moan but I really needed to let it all out.

sheila

[Guest guest]

Hi Sheila,

Perhaps the depression is just being brought on by the lyme

disease...........I was severely depressed when I had lyme............oh my

goodness, did you hear what I just said.............I guess I am feeling

much better!! Still no symptoms!!

Anyway, I was suicidal..........and tried many antidepressants until I found

one to make me less depressed...........at least not suicidal. With this

disease, depression is part of it.

I had two spinal taps............it wasn't too bad.......you'll do

o.k...........if your Dr. is good it will be over quickly.....

...........My spinal tap was normal..........Hang in there, and talk to your

Dr. about a low dose of an antidepressant.

Connie nwnj

[Guest guest]

I read on one of the

sites that 'there is no cure for long term Lyme' and wondered why am I

going

through all this if its not going to work. Its been so many years now

- am

Shiela, funny you should say that. after 8 weeks of IV last year

countless months on orals abx and just finished 8 weeks IV last week, i

am wondering the same. But what are we supposed to do? give up? lie

down and wait to die? I dont know, but it really gets me down when i

feel i am not going to ever get better. I wouldnt mind so much i

guess, if SSD, and others took our disease more seriously. good luck

with the spinal tap.

roe

__________________________________________________

[Guest guest]

Hello everyone

My husband has had the brilliant idea that if my treatment (200 mg p day

doxy) doesn't work and my doctor decides not to treat me further, then we

should save up and find a doctor in USA or Canada and travel over. I could

stay with my brother in Toronto and travel to a good LLMD or clinic. Does

anyone know anybody who has done this. I would like to try to find out how

much the investigations and treatment would cost and whether I could claim

the cost back from the British NHS? Finding the intitial money would not

be easy, but if it works it would be worth it. I wonder how my British

doctor would feel if I did this. Does anyone have a suggestion for a good

clinic I could approach. I have heard that some doctors are not taking new

patients and this could be problematic for me. If someone could email me

privately with information I would appreciate it. Although I felt a little

less 'toxic' after about 2 - 3 weeks of doxy, I have not really felt any

improvement since and seriously doubt if I will. I feel I need more drastic

drugs and the support of a specialist who sees chronic lyme every day and is

an expert in the treatment of it. I have this terrible interminable worry

that I am going to end up senile with this disease if it is not treated more

aggressively. Any help would be appreciated. Thanks

Take care - Sheila

[Guest guest]

>Hello

I have had the same problem for many years. this year I changed my doctor

and after she had referred me to an infectious disease doc for

investigation, she narrowed down some other problems often associated with

chronic disease. She diagnosed gastritis and prescribed Losec (Omeprazole).

Since taking this I have found I do not have the urge to eat so much. My

appetite may have been due to the irritation in my gastric system. Also, I

noticed cravings for carbos and I think this is another sign of a sick body

yelling for help. Its easy to get into a vicous cycle of eating the wrong

things because they make you feel better in the short term, but gaining

weight in the long term. This was true in my case and resulted in fungal

conditions and occasional hypoglycaemia. I think also that the Lyme tends

to attack certain systems in your body in cycles, mine certainly did. I

started on doxycycline at the same time as the Losec and that awful toxic

feeling eased considerably around about that time too. Its quite probable

that Lyme also affects our metabolism and slows down the rate at which we

burn calories. If you're as sick as me you probably don't get too much

exercise either.

Take Care

Sheila

>

>Thanks to everyone here for the ongoing information and support. I am

>interested to hear your experiences with " Lyme-weight. " I have been

>overweight most of my life, but it has gotten much worse in recent years,

>coinciding with my Lyme symptoms. Any info. would be appreciated.

>Thanks!!

>

>

>

>

>------------------------------------------------------------------------

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>1/5477/11/_/484634/_/962137946/

>------------------------------------------------------------------------

>

>Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

>Easy Reference:

>Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

>Please send messages not related to Lyme disease to

-Offtopicegroups

>

>Archives can be accessed at lyme-aid

>

>Please visit the chat room at chat/lyme-aid

>

>

>

[Guest guest]

http://www.lavenderlane.com/site_shop/index.htm

wrote:

>

> I went into this gift shop today that carries a line of Aromafloria

> products. I love these bottles - does anyone know where to find any

> similar?

>

> http://aromafloria.com/acb/showdetl.cfm? & DID=15 & Product_ID=31 & CATID=1

>

> http://aromafloria.com/acb/showdetl.cfm? & DID=15 & Product_ID=117 & CATID=1

>

>

[Guest guest]

In a message dated 2/16/01 8:11:26 AM Pacific Standard Time,

candleartist@... writes:

> http://aromafloria.com/acb/showdetl.cfm? & DID=15 & Product_ID=117 & CATID=1

>

>

,

If you find the bottles with the corks please let me know. I would love to

find them.

Thanks

lynn in valencia

lavender bluffs bath and body

" A little touch of heaven in your bath "

[Guest guest]

In a message dated 10/6/2005 6:28:45 A.M. Eastern Standard Time,

lindybuzz@... writes:

current and successful vitamin

and supplement routine

Dear ,

Please share with us your current and successful vitamin routine

¸.·*´¨) ¸.·*´¨)

..·*´¨)(¸.·´ (¸.·susan¸.·*¨)¸.·´

[Guest guest]

When I stopped taking meds and switched to my current and successful vitamin

and supplement routine, I did it against medical advice and was dropped by

my neuro. It no longer bothers me since I have gained control over my

seizures after more than 20 years of one drug or another with no control at

all. Sometimes, we have to make a choice - do we want to be healthy or do

we want to make our doctors happy?

>From: " daniel " <color369@...>

>Reply-

>

>Subject: [ ] still searching

>Date: Tue, 04 Oct 2005 21:28:57 -0000

>

> I got quite a response from my last message. thank you

> I am still searching for something to help control my seizures.

> Since my seizures only occur in my sleep I dont get any auras that I

>know of. My wife tells me I sit up and sometimes walk around like sleep

>walking. The biofeedback sounds like one of the best type of overall

>cures that I have found since it doesnt involve medication. When I can

>afford one of those machines I'll probably by it and try it. The other

>method that sounds better than meds is the vitamin and nutriant method

>but as someone mentioned in a response that getting my neurologist to

>get me off of meds is like pulling teeth. They are all in compliance

>with the pharmaceutical companies. I personally get the feeling that

>most of the doctors in this field are more concerned with pushing the

>product rather than curing the patient.When I got started with

>carbatrol I had medicaid and my copay was only a dollar. Now I am

>paying $135 a month to have seizures once a month. I'm also afraid to

>go too far out there with complaints because I dont want to be deemed

>disable and lose my livelyhood liscense etc. I'm definitly searching

>for the R+R book on epilepsy I'll probably find it at Borders.

>

>

>

>

>

>

[Guest guest]

Has anyone in this group had luck controlling a high volume (20+ focal

partial to tonic)of daily seizures with a routine of vitamins and

supplements? Trying to get a sense for the success rate of vitamins in

various situations. Thank you!

~

[ ] still searching

>Date: Tue, 04 Oct 2005 21:28:57 -0000

>

> I got quite a response from my last message. thank you

> I am still searching for something to help control my

seizures.

> Since my seizures only occur in my sleep I dont get any auras

that I

>know of. My wife tells me I sit up and sometimes walk around

like sleep

>walking. The biofeedback sounds like one of the best type of

overall

>cures that I have found since it doesnt involve medication.

When I can

>afford one of those machines I'll probably by it and try it.

The other

>method that sounds better than meds is the vitamin and nutriant

method

>but as someone mentioned in a response that getting my

neurologist to

>get me off of meds is like pulling teeth. They are all in

compliance

>with the pharmaceutical companies. I personally get the feeling

that

>most of the doctors in this field are more concerned with

pushing the

>product rather than curing the patient.When I got started with

>carbatrol I had medicaid and my copay was only a dollar. Now I

am

>paying $135 a month to have seizures once a month. I'm also

afraid to

>go too far out there with complaints because I dont want to be

deemed

>disable and lose my livelyhood liscense etc. I'm definitly

searching

>for the R+R book on epilepsy I'll probably find it at Borders.

>

>

>

>

>

>

[Guest guest]

I am in the process of trying to learn what vitimins herbs whatever you all have

been talking about. And I have just changed back to dilatin which did work for

me 27 years ago when I was on it for five years so I want to give it a chance.

But I am very interested in the natural approach. and even though I am not

ready to go that way because I need to read a lot and learn before I am ready.

I am going to mention to my doctor the next time I see him that that is my plan

and see how he reacts. I want to be able to still see him and hoping he will

not say that if I go that route that he would not see me. I have enough

problems without the side effects of medication.

vicki

When I stopped taking meds and switched to my current and successful vitamin

and supplement routine, I did it against medical advice and was dropped by

my neuro. It no longer bothers me since I have gained control over my

seizures after more than 20 years of one drug or another with no control at

all. Sometimes, we have to make a choice - do we want to be healthy or do

we want to make our doctors happy?

>From: " daniel " <color369@...>

>Reply-

>

>Subject: [ ] still searching

>Date: Tue, 04 Oct 2005 21:28:57 -0000

>

> I got quite a response from my last message. thank you

> I am still searching for something to help control my seizures.

> Since my seizures only occur in my sleep I dont get any auras that I

>know of. My wife tells me I sit up and sometimes walk around like sleep

>walking. The biofeedback sounds like one of the best type of overall

>cures that I have found since it doesnt involve medication. When I can

>afford one of those machines I'll probably by it and try it. The other

>method that sounds better than meds is the vitamin and nutriant method

>but as someone mentioned in a response that getting my neurologist to

>get me off of meds is like pulling teeth. They are all in compliance

>with the pharmaceutical companies. I personally get the feeling that

>most of the doctors in this field are more concerned with pushing the

>product rather than curing the patient.When I got started with

>carbatrol I had medicaid and my copay was only a dollar. Now I am

>paying $135 a month to have seizures once a month. I'm also afraid to

>go too far out there with complaints because I dont want to be deemed

>disable and lose my livelyhood liscense etc. I'm definitly searching

>for the R+R book on epilepsy I'll probably find it at Borders.

>

>

>

>

>

>

[Guest guest]

,

I dont have your answer but thank you for mentioning this. I have only been

here a short time but so far I have heard people talk about seizures that happen

occassionally and many focal seizures a day plus I am not sure what the other

ones are happen daily. I hope someone has the answers to your questions because

I am also interested.

Could you tell me or tell me where to look up what the tonic seizures are.

vicki

Has anyone in this group had luck controlling a high volume (20+ focal

partial to tonic)of daily seizures with a routine of vitamins and

supplements? Trying to get a sense for the success rate of vitamins in

various situations. Thank you!

~

[Guest guest]

I take a multivitamin, B complex, magnesium, taurine, CoQ10, flaxseed oil

and 5-HTP. They really have worked wonders for me. as far as I'm

concerned, a copy of Prescription for Nutritional Healing is a must (I

prefer the second edition over the third). Good luck with your doctor!

>From: " Vicki " <vfrank@...>

>Reply-

>< >

>Subject: Re: [ ] still searching

>Date: Thu, 6 Oct 2005 08:34:13 -0500

>

>I am in the process of trying to learn what vitimins herbs whatever you all

>have been talking about. And I have just changed back to dilatin which did

>work for me 27 years ago when I was on it for five years so I want to give

>it a chance.

>

>But I am very interested in the natural approach. and even though I am not

>ready to go that way because I need to read a lot and learn before I am

>ready. I am going to mention to my doctor the next time I see him that

>that is my plan and see how he reacts. I want to be able to still see him

>and hoping he will not say that if I go that route that he would not see

>me. I have enough problems without the side effects of medication.

>

>vicki

>

>

> When I stopped taking meds and switched to my current and successful

>vitamin

> and supplement routine, I did it against medical advice and was dropped

>by

> my neuro. It no longer bothers me since I have gained control over my

> seizures after more than 20 years of one drug or another with no control

>at

> all. Sometimes, we have to make a choice - do we want to be healthy or

>do

> we want to make our doctors happy?

>

>

> >From: " daniel " <color369@...>

> >Reply-

> >

> >Subject: [ ] still searching

> >Date: Tue, 04 Oct 2005 21:28:57 -0000

> >

> > I got quite a response from my last message. thank you

> > I am still searching for something to help control my seizures.

> > Since my seizures only occur in my sleep I dont get any auras that I

> >know of. My wife tells me I sit up and sometimes walk around like sleep

> >walking. The biofeedback sounds like one of the best type of overall

> >cures that I have found since it doesnt involve medication. When I can

> >afford one of those machines I'll probably by it and try it. The other

> >method that sounds better than meds is the vitamin and nutriant method

> >but as someone mentioned in a response that getting my neurologist to

> >get me off of meds is like pulling teeth. They are all in compliance

> >with the pharmaceutical companies. I personally get the feeling that

> >most of the doctors in this field are more concerned with pushing the

> >product rather than curing the patient.When I got started with

> >carbatrol I had medicaid and my copay was only a dollar. Now I am

> >paying $135 a month to have seizures once a month. I'm also afraid to

> >go too far out there with complaints because I dont want to be deemed

> >disable and lose my livelyhood liscense etc. I'm definitly searching

> >for the R+R book on epilepsy I'll probably find it at Borders.

> >

> >

> >

> >

> >

> >