Re: still searching

[Guest guest]

Sheila i know exactly how you feel... infact i am sure that we all do.. what

day is the wedding on?? i work every wed night i am a pale as a ghost and

have to take my morphine and vicodins ES before i can work then i am still

in pain it is very very hard isleep all day before i go. but i have to do it

to feed my kids i have no hubby or boyfriend. but i do put mind over matter

every wed you are the only one that knows how you yourself is feeling

much love and prayers

in Mich

oh and my kids know what disappoint ment is they been living with it for the

last 2 years.

Re: [ ] Re: Still searching

> Hello Vicki and Everyone

> Thank you for the words of support. I am finding this disease harder and

> harder to cope with on a daily basis, particularly being so far away from

> people who understand and deal with lyme on a daily basis. I can't tell

> you how wonderful it is to know that there are lovely people like you all

to

> help when things get tough - and tough it is. I'm a social worker by

> profession and was used to sorting out other peoples' problems, but now I

> have problems that I can't really sort out - this illness has a mind of

its

> own - it is devious and nasty. We have a big family wedding coming up in

a

> couple of weeks which is in London - 6 hours drive away - and will need to

> stay in a hotel for 3 nights. What with all preparations to make, then

the

> travel, I'm not sure I can make it, but if I don't go, I'll be letting my

> little girl down so badly. She never gets to go anywhere because I am

> always too ill. My husband won't even consider leaving me to take her

> alone, and I'm not sure I could handle the nights alone, they are the

worst

> time for symptoms. Do I sound like a whinger. Sorry. I used to be a

> fighter but lost my punch somewhere along the line.

> sheila

>

>

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

> Best friends, most artistic, class clown Find 'em here:

> 1/4054/8/_/484634/_/958820468/

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

>

> is dedicated to Marta McCoy, the foundation behind what

is today.

>

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[Guest guest]

Hello All

With regard to Lawrence and his friend with MS, I have just seen my 'specialist' who is still waiting for a test result for Toxoplasmosis following a negative western blot. I am not convinced that my symptoms match Toxo completely, feeling that they are much more close to Lyme. However, he says that the stabbing pains I get in my right eye and this awful feeling of 'being toxic' - really ill, are more in keeping with MS, which was ruled out 5 years ago by a neurologist. Does anyone else have these problems? He says I break all the diagnostic rules, because my symptoms are so strange. I know that the gastric symptoms which I have are sometimes connected to Lyme and the pattern of how my illness developed is text book Lyme ( Vanderhoof-Forschner's book) although without a bull's eye rash. The doc says he has only had one Lyme case in the past 12 months and that was cured with only one course of abx. He is now talking about doing a lumbar puncture but only to look for demyelinating disease. This last visit was like being at the zoo, but being on the receiving end. I now know how chimps feel. He had all and sundry in the room, 2 nurses, 2 trainee doctors and another unidentifed person - no one said anything except him, they just stared balefully at me, it was awful.

Down at Heart in England

sheila-e@...

[Guest guest]

Dear Sheila,

I think it's time you try everything before you become a lab test product.

One idea: find a lyme literate dr in your country. Another idea if no LLMD

is available: lie through your teeth and tell your doctor that your uncle or

cousin is a doctor in the states and that the Western Blot shows negative for

a number of people and that treatment is still important. There are many

people in this group who can fax or mail some articles for him to go on for

treatment. Try anything. Irene

[Guest guest]

Poor Sheila,

I sure do know that down in the heart feeling, especially when one is trying to deal with non-literate doctors. I have left many an office in tears. I know you are in the UK, can you see other doctors or are you stuck with this idiot??

I have had stabbing pains in one of my eyes, I know many others with LD who suffer with this too. As for the toxic feeling, maybe this is a cultural thing, a word you use in the UK that we don't here in the US. Do you mean you feel very ill, or fatigued? I call it a flu-like sensation. Many of the symptoms in Multiple Sclerosis are very similar to LD. I found this at Dr Koop's site:

http://www.drkoop.com/conditions/multiple_sclerosis/page_14_43.asp

There are four variants of multiple sclerosis. The varieties are: Benign, which occurs when the patient has one or two episodes early in the disease with complete resolution and no disability

Relapsing-remitting, which is characterized by repeated periods of symptoms and neurological defects that resolve (remit) completely

Relapsing-remitting with secondary progression, which is similar to the above with progression of disability over time resulting from incomplete remissions after each exacerbation

Primary progressive The relapsing-remitting variants are most common.Since many areas of the central nervous system can be affected by multiple sclerosis, symptoms can vary depending on the area involved. Common symptoms include weakness and impaired sensations in different parts of the body. Impaired sensations include numbness, tingling, burning and an inability to detect changes in temperature, changes in position, a light touch and pain. Feelings of imbalance, difficulty with coordination, and vertigo also may occur. Since the optic nerves are often affected, visual blurring and diminished vision that comes and goes are common symptoms. Other more generalized symptoms that may occur include bladder problems, constipation and depression. One of the more common and bothersome symptoms noted by MS patients is a feeling of chronic fatigue.

Should you agree to a spinal tap, it may possibly rule out MS, but nothing is ever for certain. The only suggestions I have for you is to find a doctor who will listen to you and read the abstracts about LD that you can share with him, ask for a trial of abx for a few months to see if they help you and if you develop the herxheimer reaction. Ask for PCR studies for LD, sometimes they can be more reliable, (not for me though). I feel so bad for you, I know how hard it is to find a doctor who will believe you, and take the time to listen. If none of these suggestions work, write me off line and we will see what we can come up with.

Hugs,

Marta

-----Original Message-----From: Sheila Darbyshire <sheila-e@...>Hello AllWith regard to Lawrence and his friend with MS, I have just seen my 'specialist' who is still waiting for a test result for Toxoplasmosis following a negative western blot. I am not convinced that my symptoms match Toxo completely, feeling that they are much more close to Lyme. However, he says that the stabbing pains I get in my right eye and this awful feeling of 'being toxic' - really ill, are more in keeping with MS, which was ruled out 5 years ago by a neurologist. Does anyone else have these problems? He says I break all the diagnostic rules, because my symptoms are so strange. I know that the gastric symptoms which I have are sometimes connected to Lyme and the pattern of how my illness developed is text book Lyme ( Vanderhoof-Forschner's book) although without a bull's eye rash. The doc says he has only had one Lyme case in the past 12 months and that was cured with only one course of abx. He is now talking about doing a lumbar puncture but only to look for demyelinating disease. This last visit was like being at the zoo, but being on the receiving end. I now know how chimps feel. He had all and sundry in the room, 2 nurses, 2 trainee doctors and another unidentifed person - no one said anything except him, they just stared balefully at me, it was awful.Down at Heart in Englandsheila-e@...

[Guest guest]

Hello All

Thank you - to Marta for all your support. When I talked about feeling 'toxic' I meant really ill and fluey, aching, dozy and tender. It comes and goes in cycles almost like it renews itself regularly. I wondered if this was a common experience for those with Lyme. The specialist is willing to read Dr Burrascano's work on Lyme and that at least is hopeful although some of my symptoms brought a glazed look to his eyes. I got the feeling though that he is kind and will do what he can to help.

sheila-e@...

[Guest guest]

Hi Sheila,

Good to know the doctor is kind, and yes that achey feeling of always

feeling ill would be defined as toxic I guess. And yes, I feel that way

too, even this very minute, yes it stops and starts, for years I used to get

all excited when I had one of those freedom from pain and energetic days, I

thought, finally it is done. I no longer kid myself and to be honest the

good days are lessening as time goes by. I hope your specialist takes the

time to read Burrascano's work, keep on him. Are you on any abx at all?

Hugs,

Marta

-----Original Message-----

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

Hello All

Thank you - to Marta for all your support. When I talked about feeling

'toxic' I meant really ill and fluey, aching, dozy and tender. It comes and

goes in cycles almost like it renews itself regularly. I wondered if this

was a common experience for those with Lyme. The specialist is willing to

read Dr Burrascano's work on Lyme and that at least is hopeful although some

of my symptoms brought a glazed look to his eyes. I got the feeling though

that he is kind and will do what he can to help.

sheila-e@...

[Guest guest]

Hello All

With regard to Lawrence and his friend with MS, I have just seen my 'specialist' who is still waiting for a test result for Toxoplasmosis following a negative western blot. I am not convinced that my symptoms match Toxo completely, feeling that they are much more close to Lyme. However, he says that the stabbing pains I get in my right eye and this awful feeling of 'being toxic' - really ill, are more in keeping with MS, which was ruled out 5 years ago by a neurologist. Does anyone else have these problems? He says I break all the diagnostic rules, because my symptoms are so strange. I know that the gastric symptoms which I have are sometimes connected to Lyme and the pattern of how my illness developed is text book Lyme ( Vanderhoof-Forschner's book) although without a bull's eye rash. The doc says he has only had one Lyme case in the past 12 months and that was cured with only one course of abx. He is now talking about doing a lumbar puncture but only to look for demyelinating disease. This last visit was like being at the zoo, but being on the receiving end. I now know how chimps feel. He had all and sundry in the room, 2 nurses, 2 trainee doctors and another unidentifed person - no one said anything except him, they just stared balefully at me, it was awful.

Down at Heart in England

sheila-e@...

[Guest guest]

Sheila, I agree with Irene 100%. As for some of those articles she

mentioned, I have tons saved. Let me know if you can receive attachments and

I'll send you a little at a time. There is some really good stuff. Just hope

you have luck with a doctor that is willing to learn. Good luck with

everything, let me know if I can help. Vicki, MD (land, not as in

doctor)

>From: renier1@...

>

>Dear Sheila,

>I think it's time you try everything before you become a lab test product.

>One idea: find a lyme literate dr in your country. Another idea if no

LLMD

>is available: lie through your teeth and tell your doctor that your uncle

or

>cousin is a doctor in the states and that the Western Blot shows negative

for

>a number of people and that treatment is still important. There are many

>people in this group who can fax or mail some articles for him to go on for

>treatment. Try anything. Irene

>

[Guest guest]

Dear Sheila,

I think it's time you try everything before you become a lab test product.

One idea: find a lyme literate dr in your country. Another idea if no LLMD

is available: lie through your teeth and tell your doctor that your uncle or

cousin is a doctor in the states and that the Western Blot shows negative for

a number of people and that treatment is still important. There are many

people in this group who can fax or mail some articles for him to go on for

treatment. Try anything. Irene

[Guest guest]

Marta,

I know what you mean. I've actually had a pretty good week. And keep

reminding myself not to get too excited. Its been a long time since I had an

entire week of doing well. Still have insomnia problem and some pains here

and there, but not the " all over body pain, all the time " . But I've let

myself get excited too many times, thinking this is it, I'm finally going to

be normal again. Always get a big let down. I actually got into my garden

this weekend, guess what happened? I was out pulling weeds for all of 10

minutes, and starting to get over my paranoia about it and getting excited,

feeling that old good feeling of working with my flowers - a storm out of no

where rolled in. If it weren't for the lightning, I would have stayed out in

the rain. Call me !

Vicki, Md

>From: " Marta McCoy " <mlmccoy@...>

>

yes it stops and starts, for years I used to get

>all excited when I had one of those freedom from pain and energetic days, I

>thought, finally it is done. I no longer kid myself and to be honest the

>good days are lessening as time goes by.

[Guest guest]

Sheila,

have you checked out the list of symptoms for Lyme at Lyme Alliance (I think Reid suggested)? All your symptoms are common to Lyme,and I'm sure you have more you haven't mentioned. I get the stabbing pains in both my eyes. Plus do you have cats? I thought that is how you get toxoplasmosis - the most common way anyway. I also read that a lot of people get it, but their immune system does a good job of keeping it from making you ill. So it's supposedly not a difficult bacteria to fight. I agree with you, your symptoms sound more like Lyme. My (first) doctor also told me my symptoms didn't make any sense, if he would have know more about Lyme he would have known its a multi-systematic disease that can cause sooooooo many symptoms. And as we often say - its weird how it affects everyone differently. Like some of us have real bad Lyme arthritis, while some of us have worse neurological symptoms, and some of us have it all. Good luck - keep trying to educate your doctor. As for the spinal tap, it often does not rule out Lyme Disease, but can rule out things like MS. But I think there are easier tests for that, like a MRI. I'd check into that first, the less invasive the test, the less stress on you. I'd always opt for less invasive if I had the choice. Keep us informed and write anytime, even if you just feel like venting.

Vicki, Md

-----Original Message-----From: Sheila Darbyshire <sheila-e@...>Hello AllWith regard to Lawrence and his friend with MS, I have just seen my 'specialist' who is still waiting for a test result for Toxoplasmosis following a negative western blot. I am not convinced that my symptoms match Toxo completely, feeling that they are much more close to Lyme. However, he says that the stabbing pains I get in my right eye and this awful feeling of 'being toxic' - really ill, are more in keeping with MS, which was ruled out 5 years ago by a neurologist. Does anyone else have these problems? He says I break all the diagnostic rules, because my symptoms are so strange. I know that the gastric symptoms which I have are sometimes connected to Lyme and the pattern of how my illness developed is text book Lyme ( Vanderhoof-Forschner's book) although without a bull's eye rash. The doc says he has only had one Lyme case in the past 12 months and that was cured with only one course of abx. He is now talking about doing a lumbar puncture but only to look for demyelinating disease. This last visit was like being at the zoo, but being on the receiving end. I now know how chimps feel. He had all and sundry in the room, 2 nurses, 2 trainee doctors and another unidentifed person - no one said anything except him, they just stared balefully at me, it was awful.Down at Heart in Englandsheila-e@...

[Guest guest]

Poor Sheila,

I sure do know that down in the heart feeling, especially when one is trying to deal with non-literate doctors. I have left many an office in tears. I know you are in the UK, can you see other doctors or are you stuck with this idiot??

I have had stabbing pains in one of my eyes, I know many others with LD who suffer with this too. As for the toxic feeling, maybe this is a cultural thing, a word you use in the UK that we don't here in the US. Do you mean you feel very ill, or fatigued? I call it a flu-like sensation. Many of the symptoms in Multiple Sclerosis are very similar to LD. I found this at Dr Koop's site:

http://www.drkoop.com/conditions/multiple_sclerosis/page_14_43.asp

There are four variants of multiple sclerosis. The varieties are: Benign, which occurs when the patient has one or two episodes early in the disease with complete resolution and no disability

Relapsing-remitting, which is characterized by repeated periods of symptoms and neurological defects that resolve (remit) completely

Relapsing-remitting with secondary progression, which is similar to the above with progression of disability over time resulting from incomplete remissions after each exacerbation

Primary progressive The relapsing-remitting variants are most common.Since many areas of the central nervous system can be affected by multiple sclerosis, symptoms can vary depending on the area involved. Common symptoms include weakness and impaired sensations in different parts of the body. Impaired sensations include numbness, tingling, burning and an inability to detect changes in temperature, changes in position, a light touch and pain. Feelings of imbalance, difficulty with coordination, and vertigo also may occur. Since the optic nerves are often affected, visual blurring and diminished vision that comes and goes are common symptoms. Other more generalized symptoms that may occur include bladder problems, constipation and depression. One of the more common and bothersome symptoms noted by MS patients is a feeling of chronic fatigue.

Should you agree to a spinal tap, it may possibly rule out MS, but nothing is ever for certain. The only suggestions I have for you is to find a doctor who will listen to you and read the abstracts about LD that you can share with him, ask for a trial of abx for a few months to see if they help you and if you develop the herxheimer reaction. Ask for PCR studies for LD, sometimes they can be more reliable, (not for me though). I feel so bad for you, I know how hard it is to find a doctor who will believe you, and take the time to listen. If none of these suggestions work, write me off line and we will see what we can come up with.

Hugs,

Marta

-----Original Message-----From: Sheila Darbyshire <sheila-e@...>Hello AllWith regard to Lawrence and his friend with MS, I have just seen my 'specialist' who is still waiting for a test result for Toxoplasmosis following a negative western blot. I am not convinced that my symptoms match Toxo completely, feeling that they are much more close to Lyme. However, he says that the stabbing pains I get in my right eye and this awful feeling of 'being toxic' - really ill, are more in keeping with MS, which was ruled out 5 years ago by a neurologist. Does anyone else have these problems? He says I break all the diagnostic rules, because my symptoms are so strange. I know that the gastric symptoms which I have are sometimes connected to Lyme and the pattern of how my illness developed is text book Lyme ( Vanderhoof-Forschner's book) although without a bull's eye rash. The doc says he has only had one Lyme case in the past 12 months and that was cured with only one course of abx. He is now talking about doing a lumbar puncture but only to look for demyelinating disease. This last visit was like being at the zoo, but being on the receiving end. I now know how chimps feel. He had all and sundry in the room, 2 nurses, 2 trainee doctors and another unidentifed person - no one said anything except him, they just stared balefully at me, it was awful.Down at Heart in Englandsheila-e@...

[Guest guest]

Hello All

Thank you - to Marta for all your support. When I talked about feeling 'toxic' I meant really ill and fluey, aching, dozy and tender. It comes and goes in cycles almost like it renews itself regularly. I wondered if this was a common experience for those with Lyme. The specialist is willing to read Dr Burrascano's work on Lyme and that at least is hopeful although some of my symptoms brought a glazed look to his eyes. I got the feeling though that he is kind and will do what he can to help.

sheila-e@...

[Guest guest]

Hi Sheila,

Good to know the doctor is kind, and yes that achey feeling of always

feeling ill would be defined as toxic I guess. And yes, I feel that way

too, even this very minute, yes it stops and starts, for years I used to get

all excited when I had one of those freedom from pain and energetic days, I

thought, finally it is done. I no longer kid myself and to be honest the

good days are lessening as time goes by. I hope your specialist takes the

time to read Burrascano's work, keep on him. Are you on any abx at all?

Hugs,

Marta

-----Original Message-----

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

Hello All

Thank you - to Marta for all your support. When I talked about feeling

'toxic' I meant really ill and fluey, aching, dozy and tender. It comes and

goes in cycles almost like it renews itself regularly. I wondered if this

was a common experience for those with Lyme. The specialist is willing to

read Dr Burrascano's work on Lyme and that at least is hopeful although some

of my symptoms brought a glazed look to his eyes. I got the feeling though

that he is kind and will do what he can to help.

sheila-e@...

[Guest guest]

Sheila, I agree with Irene 100%. As for some of those articles she

mentioned, I have tons saved. Let me know if you can receive attachments and

I'll send you a little at a time. There is some really good stuff. Just hope

you have luck with a doctor that is willing to learn. Good luck with

everything, let me know if I can help. Vicki, MD (land, not as in

doctor)

>From: renier1@...

>

>Dear Sheila,

>I think it's time you try everything before you become a lab test product.

>One idea: find a lyme literate dr in your country. Another idea if no

LLMD

>is available: lie through your teeth and tell your doctor that your uncle

or

>cousin is a doctor in the states and that the Western Blot shows negative

for

>a number of people and that treatment is still important. There are many

>people in this group who can fax or mail some articles for him to go on for

>treatment. Try anything. Irene

>

[Guest guest]

Marta,

I know what you mean. I've actually had a pretty good week. And keep

reminding myself not to get too excited. Its been a long time since I had an

entire week of doing well. Still have insomnia problem and some pains here

and there, but not the " all over body pain, all the time " . But I've let

myself get excited too many times, thinking this is it, I'm finally going to

be normal again. Always get a big let down. I actually got into my garden

this weekend, guess what happened? I was out pulling weeds for all of 10

minutes, and starting to get over my paranoia about it and getting excited,

feeling that old good feeling of working with my flowers - a storm out of no

where rolled in. If it weren't for the lightning, I would have stayed out in

the rain. Call me !

Vicki, Md

>From: " Marta McCoy " <mlmccoy@...>

>

yes it stops and starts, for years I used to get

>all excited when I had one of those freedom from pain and energetic days, I

>thought, finally it is done. I no longer kid myself and to be honest the

>good days are lessening as time goes by.

[Guest guest]

Sheila,

have you checked out the list of symptoms for Lyme at Lyme Alliance (I think Reid suggested)? All your symptoms are common to Lyme,and I'm sure you have more you haven't mentioned. I get the stabbing pains in both my eyes. Plus do you have cats? I thought that is how you get toxoplasmosis - the most common way anyway. I also read that a lot of people get it, but their immune system does a good job of keeping it from making you ill. So it's supposedly not a difficult bacteria to fight. I agree with you, your symptoms sound more like Lyme. My (first) doctor also told me my symptoms didn't make any sense, if he would have know more about Lyme he would have known its a multi-systematic disease that can cause sooooooo many symptoms. And as we often say - its weird how it affects everyone differently. Like some of us have real bad Lyme arthritis, while some of us have worse neurological symptoms, and some of us have it all. Good luck - keep trying to educate your doctor. As for the spinal tap, it often does not rule out Lyme Disease, but can rule out things like MS. But I think there are easier tests for that, like a MRI. I'd check into that first, the less invasive the test, the less stress on you. I'd always opt for less invasive if I had the choice. Keep us informed and write anytime, even if you just feel like venting.

Vicki, Md

-----Original Message-----From: Sheila Darbyshire <sheila-e@...>Hello AllWith regard to Lawrence and his friend with MS, I have just seen my 'specialist' who is still waiting for a test result for Toxoplasmosis following a negative western blot. I am not convinced that my symptoms match Toxo completely, feeling that they are much more close to Lyme. However, he says that the stabbing pains I get in my right eye and this awful feeling of 'being toxic' - really ill, are more in keeping with MS, which was ruled out 5 years ago by a neurologist. Does anyone else have these problems? He says I break all the diagnostic rules, because my symptoms are so strange. I know that the gastric symptoms which I have are sometimes connected to Lyme and the pattern of how my illness developed is text book Lyme ( Vanderhoof-Forschner's book) although without a bull's eye rash. The doc says he has only had one Lyme case in the past 12 months and that was cured with only one course of abx. He is now talking about doing a lumbar puncture but only to look for demyelinating disease. This last visit was like being at the zoo, but being on the receiving end. I now know how chimps feel. He had all and sundry in the room, 2 nurses, 2 trainee doctors and another unidentifed person - no one said anything except him, they just stared balefully at me, it was awful.Down at Heart in Englandsheila-e@...

[Guest guest]

girls....i totally agree......i like marta now take a good day for what it

is......a chance to do some long neglected stuff( and usually pay for it by

overdoing) .....i relish those days.....i am getting better at working thru

the what are now " normal days "

this charity thing i am doing has me so excited ...a sense of purpose

again.....i am overdoing and paying but loving it till i fall down......check

out our site

www.racing4kids.org

i am on the board ...and the NJ rep.....it is so much fun.....

plus i can do it from home when i have the energy ( and sometimes when i

don't) plus during those sleepless nites that we all know to much about

love ya all........getting ready to rumble

Reid

[Guest guest]

vicki....cleaning is good but not to fullfilling.....i have sent so many e

mails to teams for donations to my auction i am going cross eyed.....just

read some mail ....some major NHRA drag racing teams are sending me

stuff......soooo cool......i am so excited....even though i am having a

little problem with the paper work with the state....after 3 years of bordom

and self loathing i finally feel good about a few things now.....it has given

me purpose....which i sorely needed....while i know i shall never have a

" real job " again ....i appreciate this......now if i had a lap top i could

work from bed.....instead of jumping up and down all the time due to

pain......tiring but worth it

Reid

[Guest guest]

Reid,

Great site, I bookmarked it so I can read it thoroughly when I have time.

I'm so proud of you! You give me hope, that one day I can do something more

productive other than cleaning my house on one of my " good days " . I cleaned

it completely, this weekend for the first time in months. Ant could sit at

the computer and have a dump truck of dirt dumped all around him and he

still wouldn't care. Lucky for me he doesn't care, because that means he

doesn't get upset with me for not keeping a clean house. In fact,I think he

is glad, because I used to be a neat freak and he is a classic slob! I

digress, I know. But thanks for your inspiration. Vicki, Md

>From: rmcmur3194@...

>

>girls....i totally agree......i like marta now take a good day for what it

>is......a chance to do some long neglected stuff( and usually pay for it by

>overdoing) .....i relish those days.....i am getting better at working thru

>the what are now " normal days "

>this charity thing i am doing has me so excited ...a sense of purpose

>again.....i am overdoing and paying but loving it till i fall

down......check

>out our site

>www.racing4kids.org

>i am on the board ...and the NJ rep.....it is so much fun.....

>plus i can do it from home when i have the energy ( and sometimes when i

>don't) plus during those sleepless nites that we all know to much about

>love ya all........getting ready to rumble

>Reid

>

[Guest guest]

Hi Vicki,

Glad to hear that you had such a good week! When I have a day when I

feel " good " , I enjoy every minute of it!!! And when I'm feeling lousy, I

remember that good days will return again, and that keeps me going.

Take Care,

Joan LI NY

[Guest guest]

Hi Sheila,

Here is what I came up with regarding Meningitis:

http://dem0nmac.mgh.harvard.edu/neurowebforum/GeneralFeedbackArticles/Meningitisexplained.html

Meningitis explainedThis response submitted by Margolin, M.D. on 2/19/96.

Meningitis is any inflammation of the meninges, a membrane which surrounds the brain and spinal cord, enclosing the cerebrospinal fluid which bathes the central nervous system. Spinal meningitis is a common presentation of meningitis, where the spinal cord rather than the brain is mostly affected. The usual symptoms are severe headache, fever, rigidly stiff neck (can't touch chin to chest), and possibly alterations of the level of consciousness.The most serious meningitis is bacterial meningitis, which requires treatment with antibiotics. Untreated, it can cause seizures, coma, and lasting disability (blindness, deafness, brain damage) or even death. Bacterial meningitis can indeed be infectious, even epidemic, in schools. Someone infected, and perhaps their close contacts, may need quarantine until treated.

Other meningitis can be caused by viruses (which are mostly self-limited conditions, improving without antibiotics), fungal meningitis (commonly affecting AIDS patients), tuberculosis, and even Lyme disease and syphilis. Rarely, meningitis is non-infectious.

In general, everyone is susceptible. In the USA, all infants are receiving a vaccine (HIB vaccine) which prevents a common pediatric bacterial meningitis.

Lyme encephalopathy:

http://www.x-l.net/Lyme/lyenceph.htm

Lyme encephalopathy: long-term neuropsychological deficits years after acute neuroborreliosis.

Neurological Department, University of Innsbruck, Austria. Acta Neurol Scand 1995 May;91(5):353-7 Benke T, Gasse T, Hittmair-Delazer M, Schmutzhard E

ABSTRACT:

We studied long-term cognitive deficits in 20 patients with previously diagnosed Lyme borreliosis several years (average 51.6 months) after their acute phase of illness. Compared with an age- and education matched control group Lyme patients revealed deficits of verbal memory, mental flexibility, verbal associative functions and articulation, but performed adequately on tests of intellectual and problem solving skills, sustained attention, visuoconstructive abilities and mental speed. The late cognitive outcome was unrelated to disease variables from the acute stage of illness, but also to the interval elapsed since infection with B. burgdorferi. These and similar observations (Krupp et al. 1991) suggest that the so-called Lyme encephalopathy may be associated with a long-lasting neuropsychological deficit predominantly affecting mnestic functions.

I have also sent you private email with other links that may help you convince your doctor. I hope this helps.

Hugs,

Marta

-----From: Sheila Darbyshire <sheila-e@...>Hello EveryoneI have read in Burrascano's work that encephalopathy is suggestive of dual/co-infections. Can anyone tell me the symptoms of encephalopathy and also those of Lyme meningitis, as I thought I had both these, but doc says unlikely.Take Care - sheila

[Guest guest]

Sheila, I found the following on MEDLINE at

http://www.medscape.com/server-java/MedlineSearchForm

You can obtain a free account with just your email address.

Neuropsychological deficits in Lyme disease patients with and without other

evidence of central nervous system pathology.

Appl Neuropsychol 1999;6(1):3-11 (ISSN: 0908-4282)

Kaplan RF; -Woodward L; Workman K; Steere AC; Logigian EL; Meadows ME

[Find other articles with these Authors]

Department of Neurology, Tufts University School of Medicine, Boston,

Massachusetts, USA.

A small percentage of Lyme patients develop mild to moderate encephalopathic

symptoms months to years after diagnosis and treatment. Their symptoms

typically include fatigue, memory loss, sleep disturbance, and depression.

However, the etiology of this syndrome remains controversial. It is

generally thought that Lyme patients with abnormal cerebral spinal fluid

(CSF) have a neurological basis to their illness. To further examine this

question, we compared Lyme patients with evidence of abnormal CSF,

intrathecal antibody to Borrelia burgdorferi, elevated protein, or a

positive polymerase chain reaction for B. burgdorferi DNA (n = 14); Lyme

patients with normal CSF (n = 18); and healthy controls (n = 15) on a

battery of neuropsychological and personality tests. Although both Lyme

groups reported memory problems, only the Lyme group with abnormal CSF had

measurable memory deficits. Both Lyme groups had higher depression scores

than the normal control group, although depression was not correlated with

memory scores. It appears that Lyme patients with abnormal CSF may have a

neurological basis to their illness, whereas affective symptoms, common to

many chronic disorders, may predispose other Lyme patients to the perception

of cognitive dysfunction.

- - - AND - - -

Matrix metalloproteinases in the cerebrospinal fluid of patients with Lyme

neuroborreliosis.

J Infect Dis 1998 Feb;177(2):401-8 (ISSN: 0022-1899)

Perides G; Charness ME; Tanner LM; O; Satz N; Steere AC; Klempner MS

[Find other articles with these Authors]

Tupper Research Institute, Tufts University School of Medicine, New England

Medical Center, Boston, Massachusetts 02111, USA.

george.perides@....

Neurologic manifestations of Lyme disease include meningitis,

encephalopathy, and cranial and peripheral neuropathy. There are no

sensitive markers for neuroborreliosis, and diagnosis is often based on

clinical presentation and cerebrospinal fluid (CSF) abnormalities, including

intrathecal antibody production. Matrix metalloproteinase (MMP) activity in

CSF was compared in patients with neuroborreliosis, patients with diverse

neurologic disorders, and healthy controls. The CSF of 17 of 18 healthy

subjects and 33 of 37 patients with neurologic symptoms and normal CSF and

imaging studies contained only MMP2. The CSF of several patients with

neurologic disorders contained MMP2, MMP9, and gelatinolytic activity at 130

and 250 kDa. The 130-kDa MMP was found without the 92-kDa MMP9 in the CSF of

11 (79%) of 14 patients with neuroborreliosis and only 7 (6%) of 118 control

patients (P < .001). This pattern of CSF gelatinase activity may be a useful

marker for neuroborreliosis.

Bill Wagner

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

The role of nutritional saccharides in health

http://www.glycoscience.com/glycoscience/home.wm

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

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

>Reply-lyme-aidonelist

><lyme-aidonelist>

>Subject: [ ] Still searching

>Date: Sat, 1 Apr 2000 20:28:16 +0100

>

>Hello Everyone

>I have read in Burrascano's work that encephalopathy is suggestive of

>dual/co-infections. Can anyone tell me the symptoms of encephalopathy and

>also those of Lyme meningitis, as I thought I had both these, but doc says

>unlikely.

>Take Care - sheila

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Dear Sheila,

I'm sorry you've been having such a hard time. I did have the choking

problems for 1

week every month with a weird sore throat for a few years before I was diagnosed

and

began treatment. I have also seen someone else write of these choking problems.

However,

I'm fortunate that it didn't affect my esophagus, and I have no permanent damage

that I

know of other than intermittent hoarseness that has never recurred full blown. I

have

met a few people who have reflux problems that they attribute to LD. Hope this

helps you

know you're not alone.

Eileen, NJ

[Guest guest]

Hello All

I am unable to receive any emails because my 'pooter' (as my daughter calls

it) is not receiving them and is repeating 2 or 3 emails over and over. I

have used Telnet on Outlook Express to stop this but it has started again.

Any ideas anyone? I have had no messages since the 14th and am getting

withdrawal! I miss hearing from everyone. You keep me cheerful.

sheila-e@...