Re: still searching

[Guest guest]

What a fool I am!!! If I can't receive messages, how will anyone be able to

contact me regarding my email problem? You can tell I have brain problems!

My ICQ is 65792268 if anyone has some idea of what I can do.

sheila-e@...

[Guest guest]

Hi Sheila,

Your daughter sounds so precious. I have had problems like that before,

but it was my server's errors. Have you contacted your internet server

provider??? Ironic, I was just thinking about you, our new member Sky

mentions that her Lyme symptoms other than the norm include swallowing

problems, I am pretty sure you mentioned that was one of yours too. To

catch up on your mail and to check that you haven't missed any posts, go to

the archives and read them there, they come up real nice, and are easy to

read, one right after the other. They are filed by month, so it begins with

April 1, but you can look at the total number of posts, and guess which ones

to jump to. That takes a few minutes, but after that, it is a breeze.

Here is the site:

/group/lyme-aid

just scroll up the page to find the archives. I read ahead on my list and I

saw your note that you will probably not receive this mail, I hope you do.

If any list members have ICQ would you forward the info about reading the

archives to Sheila, I never re-loaded ICQ when I had my last crash.

Hugs,

Marta

----

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

>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@...

[Guest guest]

Hi Sheila,

Your daughter sounds so precious. I have had problems like that before,

but it was my server's errors. Have you contacted your internet server

provider??? Ironic, I was just thinking about you, our new member Sky

mentions that her Lyme symptoms other than the norm include swallowing

problems, I am pretty sure you mentioned that was one of yours too. To

catch up on your mail and to check that you haven't missed any posts, go to

the archives and read them there, they come up real nice, and are easy to

read, one right after the other. They are filed by month, so it begins with

April 1, but you can look at the total number of posts, and guess which ones

to jump to. That takes a few minutes, but after that, it is a breeze.

Here is the site:

/group/lyme-aid

just scroll up the page to find the archives. I read ahead on my list and I

saw your note that you will probably not receive this mail, I hope you do.

If any list members have ICQ would you forward the info about reading the

archives to Sheila, I never re-loaded ICQ when I had my last crash.

Hugs,

Marta

----

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

>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@...

[Guest guest]

Reading through beth's message reminded me of my memory problems. Is

this typical lyme or what? I could not find my cheque card anywhere,

immediately panicked. Visions of evil criminals rushing about in Harrods,

spending all my meagre resources set me sweating. I turned the house upside

down, looked under all the cushions. I was getting shakey - as you do. I

tried to cancel the card but the bank did not answer the phone. My husband

would be mad, my daughter would snigger (she's thirteen - they do that a

lot!). Even the dog looked nervous. I emptied my bag on the table and

hunted through the debris. How did I get all this rubbish in my purse?

Why do we have so many store cards? Why was I carrying around six

lipsticks, all without their covers? What is the meaning to the question of

life? What was I looking for anyway?

At that moment my husband arrived home, smiled sweetly, and said, 'are you

looking for your card dear, its on the mantle - anything happen while I was

out?' Trouble was I couldn't remember!

sheila

[Guest guest]

Dear Sheila:

Thanks for the reality check! You got a hearty laugh out of me, something I

have not done much lately. Hope you don't loose anything in the near future,

but if you do, let us know about it!

Sincerely,

Annie

[Guest guest]

Reading through beth's message reminded me of my memory problems. Is

this typical lyme or what? I could not find my cheque card anywhere,

immediately panicked. Visions of evil criminals rushing about in Harrods,

spending all my meagre resources set me sweating. I turned the house upside

down, looked under all the cushions. I was getting shakey - as you do. I

tried to cancel the card but the bank did not answer the phone. My husband

would be mad, my daughter would snigger (she's thirteen - they do that a

lot!). Even the dog looked nervous. I emptied my bag on the table and

hunted through the debris. How did I get all this rubbish in my purse?

Why do we have so many store cards? Why was I carrying around six

lipsticks, all without their covers? What is the meaning to the question of

life? What was I looking for anyway?

At that moment my husband arrived home, smiled sweetly, and said, 'are you

looking for your card dear, its on the mantle - anything happen while I was

out?' Trouble was I couldn't remember!

sheila

[Guest guest]

Sheila, you may have lost your short term memory (like a lot of us) but your

sense of humor is great you could write articles like Irma Bombeck. You made

me laugh, I have done the same thing! Carol F. In Michigan

[Guest guest]

Lyme in the UK

>Hi Sheila,

> I was looking something up for Annie on our group who has a friend in

>the UK who is searching for treatment and came across these sites.

>Apologies if you knew about them already.

>Hugs,

>Marta

>

> No, no names of Lyme doctors in the UK, but I do have this online group

>you can refer to, I have to tell Sheila on our list about it too.

>lymearduk/

>It appears to be a small list, but may be helpful to both of them.

THIS IS A VERY USEFUL SITE THANKS!

>I also found this site:

>http://www.wadhurst.demon.co.uk/lyme/

>For the British Lyme disease Foundation

>Mark Greenfield is the site owner:

>mark@...

>

MARK SENDS OUT VERY USEFUL SITES AND INFORMATION BUT SADLY IS UNABLE TO

CORRESPOND WITH PEOPLE, I THINK HE MAY BE TOO SICK.

THERE IS A DOCTOR WHO IS WILLING TO TRY TRIALS OF TREATMENT FOR LYME

PATIENTS WITHOUT POSITIVE TEST RESULTS, BUT IT IS TOO EARLY FOR ME TO SAY

HOW USEFUL THIS DOCTOR IS. MORE LATER .... THANKS FOR THE INFO MARTA.

SHEILA

[Guest guest]

Hello ,

I am sorry if I sounded rather negative about Ampligen, but there have been so many 'wonder drugs' and so many disappointments for us all, mostly costing a lot of money. It is awful to get ones hopes up only to have them shattered. I have been exactly where you are now and can identify with you very much. It is easy to begin to think negatively, and with justification, when you are ill and see no way forward. But you are only at the beginning of a journey and have many paths open to you now. In Stockport we have a very active ME support group with monthly activities if you are well enough to be able to get there, and have transport. We meet in the Alma Lodge Hotel on the A6 on the second Friday of each month. There is also a welfare worker and a well established ME nurse who is willing to give advice, if you feel you need it, irrespective of whether you have Lyme or ME I believe. If you want her number contact me direct. Have you got your benefit situation sorted out yet. That is another avenue you can explore. There is a good infectious disease specialist at North Manchester Hospital, where I go. I know you have been disappointed there before but try again. His name is Mr E Dunbar and he will sometimes consider trials of antibiotic treatments. You should have had a full range of tests for infectious diseases. A Rheumy will probably not have done this with any expertise! Dunbar is near where you live. I know that hospital is gloomy but, bite the bullet, and try to get another referral. If your GP won't deal, then change and keep changing till you find one that will. Make this a priority.

Please don't put all your eggs in one basket and rely on the hope of Ampligen. Do something now, if you can, to make sure everything has been checked for. Cover all your options.

Sheila

[Guest guest]

Lyme in the UK

>Hi Sheila,

> I was looking something up for Annie on our group who has a friend in

>the UK who is searching for treatment and came across these sites.

>Apologies if you knew about them already.

>Hugs,

>Marta

>

> No, no names of Lyme doctors in the UK, but I do have this online group

>you can refer to, I have to tell Sheila on our list about it too.

>lymearduk/

>It appears to be a small list, but may be helpful to both of them.

THIS IS A VERY USEFUL SITE THANKS!

>I also found this site:

>http://www.wadhurst.demon.co.uk/lyme/

>For the British Lyme disease Foundation

>Mark Greenfield is the site owner:

>mark@...

>

MARK SENDS OUT VERY USEFUL SITES AND INFORMATION BUT SADLY IS UNABLE TO

CORRESPOND WITH PEOPLE, I THINK HE MAY BE TOO SICK.

THERE IS A DOCTOR WHO IS WILLING TO TRY TRIALS OF TREATMENT FOR LYME

PATIENTS WITHOUT POSITIVE TEST RESULTS, BUT IT IS TOO EARLY FOR ME TO SAY

HOW USEFUL THIS DOCTOR IS. MORE LATER .... THANKS FOR THE INFO MARTA.

SHEILA

[Guest guest]

Hello ,

I am sorry if I sounded rather negative about Ampligen, but there have been so many 'wonder drugs' and so many disappointments for us all, mostly costing a lot of money. It is awful to get ones hopes up only to have them shattered. I have been exactly where you are now and can identify with you very much. It is easy to begin to think negatively, and with justification, when you are ill and see no way forward. But you are only at the beginning of a journey and have many paths open to you now. In Stockport we have a very active ME support group with monthly activities if you are well enough to be able to get there, and have transport. We meet in the Alma Lodge Hotel on the A6 on the second Friday of each month. There is also a welfare worker and a well established ME nurse who is willing to give advice, if you feel you need it, irrespective of whether you have Lyme or ME I believe. If you want her number contact me direct. Have you got your benefit situation sorted out yet. That is another avenue you can explore. There is a good infectious disease specialist at North Manchester Hospital, where I go. I know you have been disappointed there before but try again. His name is Mr E Dunbar and he will sometimes consider trials of antibiotic treatments. You should have had a full range of tests for infectious diseases. A Rheumy will probably not have done this with any expertise! Dunbar is near where you live. I know that hospital is gloomy but, bite the bullet, and try to get another referral. If your GP won't deal, then change and keep changing till you find one that will. Make this a priority.

Please don't put all your eggs in one basket and rely on the hope of Ampligen. Do something now, if you can, to make sure everything has been checked for. Cover all your options.

Sheila

[Guest guest]

[Lyme-aid] Re: Long Term Lymeis? Second Guessing Ourselves after

Doc Visit

>Hope,

>

>My replies will not likely help, but figured I'd offer them up as

>anecdotes, just in case;)

>

>>She said the Mattman and Bowen tests were worthless as Lyme could not be

>>cultured.

>

>Most docs probably believe this, and it was probably true back when

>they were learning about Lyme, in school;-)

>>

Hello

Can the Mattman and Bowen test be accessed by anyone in countries other than

USA?

Sheila

[Guest guest]

[ ] Re: Long Term Lymeis? Second Guessing Ourselves after

Doc Visit

>Hope,

>

>My replies will not likely help, but figured I'd offer them up as

>anecdotes, just in case;)

>

>>She said the Mattman and Bowen tests were worthless as Lyme could not be

>>cultured.

>

>Most docs probably believe this, and it was probably true back when

>they were learning about Lyme, in school;-)

>>

Hello

Can the Mattman and Bowen test be accessed by anyone in countries other than

USA?

Sheila

[Guest guest]

Hi Sheila,

I guess Hope's post and the ID doctor she saw did not scare you off from

the Mattman and Whittaker tests. I am pretty sure they would agree to test

your blood, here is the site that will allow you to contact them.

http://www.bowen.org/

Good luck,

Hugs,

Marta

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

>

>Hello

>Can the Mattman and Bowen test be accessed by anyone in countries other

than

>USA?

>Sheila

[Guest guest]

Hello

How wonderful you are feeling so much better. I am so very pleased for you

and wish you all the best. Remind us what treatment you had. I would like

to hear about it again.

sheila

[Guest guest]

Hello

How wonderful you are feeling so much better. I am so very pleased for you

and wish you all the best. Remind us what treatment you had. I would like

to hear about it again.

sheila

[Guest guest]

What treatment....just for pain...meds I am on...

Celexa 40 mg. for depression and to help with pain...d

Prevacid 30 mg 2x a day reflux

vioux

Ibeprophin 600 mg 3x a day Pain...

Levothyroxine .025mg hypothyroid...which seems to be straightening on its

own...we hope

Cyntha Landon Idaho

[ ] Re: Still Searching

> Hello

> How wonderful you are feeling so much better. I am so very pleased for

you

> and wish you all the best. Remind us what treatment you had. I would

like

> to hear about it again.

> sheila

>

>

>

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

> Get your money connected @ OnMoney.com - the first Web site that lets

> you see and manage all of your finances all in one place.

> 1/3012/8/_/484634/_/957905137/

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

>

> Send to -Offtopiconelist messages unrelated to Lyme, please.

> Archives can be found at:

> /group/lyme-aid.

> They are filed by month, pick a month and search those archives for

subjects you are interested.

> Lyme chat, go to this URL:

> /chat/lyme-aid

> Should you have trouble opening the page, go back to

/ and make sure you are registered with a password.

You can ask ONELIST to remember you, and will only have to do this one time.

> To unsubscribe, send email to -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or " normal " for

> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave

blank both the message and subject header.

>

[Guest guest]

What treatment....just for pain...meds I am on...

Celexa 40 mg. for depression and to help with pain...d

Prevacid 30 mg 2x a day reflux

vioux

Ibeprophin 600 mg 3x a day Pain...

Levothyroxine .025mg hypothyroid...which seems to be straightening on its

own...we hope

Cyntha Landon Idaho

[ ] Re: Still Searching

> Hello

> How wonderful you are feeling so much better. I am so very pleased for

you

> and wish you all the best. Remind us what treatment you had. I would

like

> to hear about it again.

> sheila

>

>

>

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

> Get your money connected @ OnMoney.com - the first Web site that lets

> you see and manage all of your finances all in one place.

> 1/3012/8/_/484634/_/957905137/

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

>

> Send to -Offtopiconelist messages unrelated to Lyme, please.

> Archives can be found at:

> /group/lyme-aid.

> They are filed by month, pick a month and search those archives for

subjects you are interested.

> Lyme chat, go to this URL:

> /chat/lyme-aid

> Should you have trouble opening the page, go back to

/ and make sure you are registered with a password.

You can ask ONELIST to remember you, and will only have to do this one time.

> To unsubscribe, send email to -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or " normal " for

> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave

blank both the message and subject header.

>

[Guest guest]

Marta

I am so sorry that you are unable to continue as our moderator. I have been

so grateful for the kind and balanced guidance you have given us since I

joined the list. You have given us all hope and encouragement when we

needed it badly and I for one will miss you in that role, very much. I hope

we will still hear from you often as you have become a good and valued

friend, and also that your health improves as the workload eases up.

Thanks for all your hard work.

sheila

[Guest guest]

H U R R A H ! ! !

After 22 years of terrible, lousy illness, my new specialist has agreed to

try a low dose of doxycycline for about a month and if successful, raise the

dose and continue for three months. Put the flags out, turn up the music,

I'm having a party !!!!!!

The tests for toxoplasmosis were negative, although I have had it at some

stage in my life because I have antibodies. He wants me to have a spinal

tap to exclude other demyelinating illnesses which he is concerned about. I

KNOW I was infected with a nasty lyme-type bug on holiday in NE America. He

says he is not concerned so much with giving it a label which may not be

possible because my W Blot was negative, but trying to find something to

alleviate or remove my symptoms.

One problem - my GP has just diagnosed me with severe gastritis and has put

me on omazaprole (spelling?) antacid which has made a big difference to the

gastric pain. Its also stopped that awful knawing hunger I use to have.

However, I know that this type of drug can bind with the doxycycline and

limit its effectiveness. Does anyone have any opinion on whether I should

stop taking it for the time being? Also, am I likely to develop Herxs on

doxy? Doctor says unlikely but he has little experience of lyme -

especially late lyme. What is the dose that I should be aiming for in the

next few weeks. I get the feeling that 100 mg is way too low. Any advice

please?

By the way Reid, how I admire you and the others like you, who are dealing

with their rotten illness in such a positive way, by doing something useful

in their communities despite all the pain and exhaustion of lyme. I lurk

each night when I can't sleep and read all your stories about your lives and

support for each other, and never cease to wonder at the courage and sheer

guts so many people on this list show in the face of suffering. Some of us

may not contribute very often but we are lifted by your spirit and humour.

sheila-e@...

[Guest guest]

Hello,

I just went through 4 months of doxy. At the start I had severs

reactions, seizures, pain, shaking, etc. I started the whole 300 mg

in one day. Dr. B says doxy is only effective in high enough doses,

300-600 mg a day. So while you have a start, I would not look at it

like a cure for long term lyme. I wish that I had slowly did a ramp

up instead of all in one day. I also got the worst cough while on

doxy.

I would think that if you have been infected that long, your CNS must

be infected. 100 mg of Doxy will not help that.

Be careful about the spinal tap. Make sure your doc is not doing it

to just cover himself. Spinal Taps to detect Lyme are not to useful.

good luck!

jim

[Guest guest]

Dear Sheila,

hi...wnated to share withg you that my 1st lyme western blot was

negative...yet showed 'significant' bands..i also did a lyme LUAT...lyme

urine antigen test ...thru IGENEX labs and was defineately positve for

borellia...i then was retested again with Elissa (neg) and another western

blot with BBI labs...this western blot was pos. with the bands 62,64, & 66.....

no doubt ...i got 'it'......i started with Biaxcin 500 mg to do the LUAT

while on menus. i continued Biaxcin, as i had a sinus infection, as well as

waiting for my 2 months to see a wonderful lyme-literate doctor...it kept me

on the holding field.

When i saw the lyme-lit doctor she up the doses of Biaxcin to 500mg QID

AND she 'added' on doxcycline 100mg QID and also added FLAGLY 500mg 3x's per

day.

i herxed...but it was welcomed to get to improvement status....

I want to mention that i live in 'sunny' california and thru the windshield

of my car the sun 'burnt' my hands from driving , FROM THE DOXYCYCLINE....do

not expose yourself to the sun....i got 2nd degree burns it hurt terribly and

i could'nt use my hands for a couple weeks...'

Thus the doctor took me off the doxy...got burn cream...and she swithced

the doxy

to Amoxicillian 875mg 2 pills each 3x'sper day.....the flagly was phased out,

only took it for 2 months...

i will be consulting with my doctor to phase in I.V. antibiotics....which

i have heard many success with ...BUT first since the blood work for the

Babesia and hlia is potentially not accurate .....i am going to do a bone

marrow sample from

my spine just to make SURE ...i don't have babsia/erhichliosis (sp?)

....because as we

lymies all know...you will never get rid of lyme if you have babesia...which

must be

taken into account....

i hope this helps you...this has been my experience so far....am still on

the warpath to kill the spirochete enemy....

best,

cheryl

In a message dated 5/15/00 11:37:46 AM, sheila-e@...

writes:

<<H U R R A H ! ! !

After 22 years of terrible, lousy illness, my new specialist has agreed to

try a low dose of doxycycline for about a month and if successful, raise the

dose and continue for three months. Put the flags out, turn up the music,

I'm having a party !!!!!!

The tests for toxoplasmosis were negative, although I have had it at some

stage in my life because I have antibodies. He wants me to have a spinal

tap to exclude other demyelinating illnesses which he is concerned about. I

KNOW I was infected with a nasty lyme-type bug on holiday in NE America. He

says he is not concerned so much with giving it a label which may not be

possible because my W Blot was negative, but trying to find something to

alleviate or remove my symptoms.

One problem - my GP has just diagnosed me with severe gastritis and has put

me on omazaprole (spelling?) antacid which has made a big difference to the

gastric pain. Its also stopped that awful knawing hunger I use to have.

However, I know that this type of drug can bind with the doxycycline and

limit its effectiveness. Does anyone have any opinion on whether I should

stop taking it for the time being? Also, am I likely to develop Herxs on

doxy? Doctor says unlikely but he has little experience of lyme -

especially late lyme. What is the dose that I should be aiming for in the

next few weeks. I get the feeling that 100 mg is way too low. Any advice

please?

By the way Reid, how I admire you and the others like you, who are dealing

with their rotten illness in such a positive way, by doing something useful

in their communities despite all the pain and exhaustion of lyme. I lurk

each night when I can't sleep and read all your stories about your lives and

support for each other, and never cease to wonder at the courage and sheer

guts so many people on this list show in the face of suffering. Some of us

may not contribute very often but we are lifted by your spirit and humour.

sheila-e@...

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

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

1/4054/8/_/484634/_/958415765/

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

Send to -Offtopiconelist messages unrelated to Lyme, please.

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/chat/lyme-aid

Should you have trouble opening the page, go back to /

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Subject: [ ] Re: Still Searching

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>>

[Guest guest]

H U R R A H ! ! !

After 22 years of terrible, lousy illness, my new specialist has agreed to

try a low dose of doxycycline for about a month and if successful, raise the

dose and continue for three months. Put the flags out, turn up the music,

I'm having a party !!!!!!

The tests for toxoplasmosis were negative, although I have had it at some

stage in my life because I have antibodies. He wants me to have a spinal

tap to exclude other demyelinating illnesses which he is concerned about. I

KNOW I was infected with a nasty lyme-type bug on holiday in NE America. He

says he is not concerned so much with giving it a label which may not be

possible because my W Blot was negative, but trying to find something to

alleviate or remove my symptoms.

One problem - my GP has just diagnosed me with severe gastritis and has put

me on omazaprole (spelling?) antacid which has made a big difference to the

gastric pain. Its also stopped that awful knawing hunger I use to have.

However, I know that this type of drug can bind with the doxycycline and

limit its effectiveness. Does anyone have any opinion on whether I should

stop taking it for the time being? Also, am I likely to develop Herxs on

doxy? Doctor says unlikely but he has little experience of lyme -

especially late lyme. What is the dose that I should be aiming for in the

next few weeks. I get the feeling that 100 mg is way too low. Any advice

please?

By the way Reid, how I admire you and the others like you, who are dealing

with their rotten illness in such a positive way, by doing something useful

in their communities despite all the pain and exhaustion of lyme. I lurk

each night when I can't sleep and read all your stories about your lives and

support for each other, and never cease to wonder at the courage and sheer

guts so many people on this list show in the face of suffering. Some of us

may not contribute very often but we are lifted by your spirit and humour.

sheila-e@...

[Guest guest]

Dear Jim:

You make a terrific point towards the end of your response. With a Spinal

Tap, there is only a 17% chance of finding Lyme. I hope that should the

result be negative, that this information will not be used as a way to

justify a non-Lyme diagnosis, termination of Antibiotics (i.e., oral or IV)

or a referral to a Psychiatrist. Personally, I would do a Spinal Tap but

only allow it to be tested for non-Lyme testing, especially if you already

have some positive objective results. Remember, the spinal fluid and other

bodily fluids belong to you, you get to make the final disposition. Don't

let anyone intimidate you. False-negatives/false-positives will be used

against you, coming or going. Be aware!

Sincerely,

Annie

[Guest guest]

Sheila,

Congratulations on at least getting on an abx, even if such a low dose.

Hopefully you will have a herx and that should prove to your doctor that you

have Lyme. Can you have a LUAT test done? You can give your doctor info on

it from their site: http://www.igenex.com/ . I don't know about the gastric

drug, but I do agree with you that 100 mgs of Doxy is too low. How many

times a day do you take it? I was on 200mgs twice a day, then raised to

400mgs twice a day, after a few months, I didn't feel like it was working

any longer. It is usually prescribed for early Lyme and there are so many

stronger abx's he could use. Good Luck, & if I can help in any other way,

please let me know. Vicki, Md

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

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

>After 22 years of terrible, lousy illness, my new specialist has agreed to

>try a low dose of doxycycline for about a month and if successful, raise

the

>dose and continue for three months. Put the flags out, turn up the music,

>I'm having a party !!!!!!

>

>

What is the dose that I should be aiming for in the

>next few weeks. I get the feeling that 100 mg is way too low. Any advice

>please?

>

>