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In a message dated 6/26/01 7:45:47 PM Eastern Daylight Time, kmcamp22@...

writes:

>

>

>

>

>

> a, if you haven't quite left yet, would you mind telling us

> what symptoms that you have/had that make you feel like you fit

> the Lyme diagnosis as opposed to CFS (other than the blood test).

> I think many people are confused about the similarity of Lyme

> symptoms with CFS symptoms, at least I am, and I am wondering why

> you think Lyme is your main problem as opposed to CFS with a positive

> Lyme test. Thanks in advance, and it was nice having you on the list.

>

>

HI Mike,

Well I feel like I don't fit the CFIDS diagnosis very well. I had a SPECT

scan done that Cheney is using to help PWC's get disability and it was

completely normal. Also, I don't have a bad reaction to exercise as most

PWC's do. I don't have a relapse after overdoing it. Also, I have alot of

cardiac abnormalities and most PWC's don't seem to suffer in this way. I have

found many more ppl on the Lyme list with similar cardiac problems .these ppl

are recovering on long term IV abx.. At one point I spent the last of my

savings to fly to Detroit to see Dr. Lerner who is leading the field in EBV's

effect on the heart. I thought that I had found the cause of my cardiac

problems. I stayed there for a week and at the end I was told that I do not

fit his criteria either. Now that I have a positive Lyme test (PCR Bone

Marrow) I feel that long term Lyme is responsible for my immune problems and

that is why I have other opportunistic infections like Myco,EBV, etc.... So,

all of these things put together..... Plus the fact that I have a positive

test for something!!!!! YAAYYYYYYY!!!! At last !!! All these things put

together lead me to believe that whatever energy I do have has to be

channeled towards getting rid of the LYme. I begin 6 weeks IV Rocephin in the

morning!

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair -

~~ The Exorcist ~~

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a, if you haven't quite left yet, would you mind telling us

what symptoms that you have/had that make you feel like you fit

the Lyme diagnosis as opposed to CFS (other than the blood test).

I think many people are confused about the similarity of Lyme

symptoms with CFS symptoms, at least I am, and I am wondering why

you think Lyme is your main problem as opposed to CFS with a positive

Lyme test. Thanks in advance, and it was nice having you on the list.

Mike

> Hi Group,

> Just a note to let you know that I have had a positive Lyme test

> (after 12 years of llness!) and I am going to be leaving the

group.

> I cannot keep up with all the emails and I am going to join a Lyme

> group since that seems to be where I need to focus my attentions. I

> want to thank you all for your help and encouragemen through the

past

> year and a half. And I want to wish you all Good Luck and Good

> Health! Keep persevering -there is an answer for all of us

somewhere

> out there. Please email me directly at Stardantzer@a... if you

> wish to reach me. a

>

> " Do me a favor, Doc, Tell me something good. " - Blair - The

> Exorcist

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You know, given there is no identifiable cause for CFS and the difficulty

there is in diagnosing Lyme disease - particularly after much time has gone

by - it might be a good idea to stay in touch with people with CFIDS. THe

same things they use to boost the immune system, etc. may be applicable to

Lymes disease. I believe Cheney says it is not so important to find out

exactly what the bug is as it used to be. THe key is to get the system

working again.

>From: kmcamp22@...

>Reply-

>

>Subject: Re: Goodbye

>Date: Tue, 26 Jun 2001 23:42:49 -0000

>

>a, if you haven't quite left yet, would you mind telling us

>what symptoms that you have/had that make you feel like you fit

>the Lyme diagnosis as opposed to CFS (other than the blood test).

>I think many people are confused about the similarity of Lyme

>symptoms with CFS symptoms, at least I am, and I am wondering why

>you think Lyme is your main problem as opposed to CFS with a positive

>Lyme test. Thanks in advance, and it was nice having you on the list.

>

>Mike

>

>

>

> > Hi Group,

> > Just a note to let you know that I have had a positive Lyme test

> > (after 12 years of llness!) and I am going to be leaving the

>group.

> > I cannot keep up with all the emails and I am going to join a Lyme

> > group since that seems to be where I need to focus my attentions. I

> > want to thank you all for your help and encouragemen through the

>past

> > year and a half. And I want to wish you all Good Luck and Good

> > Health! Keep persevering -there is an answer for all of us

>somewhere

> > out there. Please email me directly at Stardantzer@a... if you

> > wish to reach me. a

> >

> > " Do me a favor, Doc, Tell me something good. " - Blair - The

> > Exorcist

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

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> >

> >

>

> HI Mike,

> Well I feel like I don't fit the CFIDS diagnosis very well. I had

a SPECT

> scan done that Cheney is using to help PWC's get disability and it

was

> completely normal. Also, I don't have a bad reaction to exercise as

most

> PWC's do. I don't have a relapse after overdoing it. Also, I have

alot of

> cardiac abnormalities and most PWC's don't seem to suffer in this

way.

OK, I agree with you 100%. I have never heard of ANY PWC that didn't

have a bad reaction to exercise, and almost every PWC I know of has

some type of relapse after overdoing it. However, I do think it is

important to explain why you think you have Lyme in case there are

some other members of our list who are just like you.

Mike

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AT different stages it is possible to live w/in limits and exercise. I've

been ill since 1989, and could do some light weights w/o relapsing at

different stages. Then again, at other stages, I couldn't. I have had an

experimental treatment in the past, and that enabled me to exercise

aerobically again, as my Tcells and CD8s increased. Now I take provigil and

lamictal and I've been doing high impact aerobics, sweating like a pig, and

am a personal trainer. There are many other personal trainers who have CFS

and have done what I've done with this disease. They write articles all the

time. If I overdue it though, I get a surefire migraine and become brainless.

I think that long term illness has different stages, from my experience and

those of other certified Personal Trainers from my certification company.

(BTW, i used to be an allied health professional, so I see this illness from

that perspective). I train people at work who have this, and I know how to

keep them from relapsing while improving their quality of life, and

decreasing the physical deterioration that the inactivity from this disease

causes. There are unique things to deal with while exercising with CFS, but I

am enthusiastically in favor of a graded exercise program for all, guided by

a professional, on an on and off basis, as necessary. People's necks tend to

stiffen up immediately, and I massage them as they lift, and also do hold and

release on their trigger points the whole time. I've trained people on total

disability with CFS. I haven't encountered a CFS er who is a client that can

do anything aerobically other than myself. Hope none of you give up.

Stretching makes a huge difference, and forcing those muscles to contract and

not ........oh oh forgot the word.. a little brain dead today from

aerobics........deteriorate and shrink up.. you know what I mean. I can't

retrieve the word.. It helps build strength. Interestingly enough, sometimes

the muscles of CFS patients do not contract when lifting weights and are

difficult to isolate. Mine included. It's as if they cannot produce any

ATP's. I find that Lcarnitine creatine and NADH do help for this problem.

Creatine can raise liver enzymes, especially if they are already elevated, so

do not take it without your liver enzyme profile having been done first.

Viral infections can raise them, as do some prescription drugs. I do feel

that it is important to exercise at some level, under supervision, whenever

possible.

Carol in NY

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a,

Goodluck with the IV abx. Hope it works. I know there is a lot of

controversy whether it works for long-term lyme sufferers. Was the bone

marrow lyme test positive for lyme and the standard blood PCR negative? It

is kind of coincidental that the first modern outbreak of CFS began about

the time Lyme was identified. Steve B.

Goodbye

> Hi Group,

> Just a note to let you know that I have had a positive Lyme test

> (after 12 years of llness!) and I am going to be leaving the group.

> I cannot keep up with all the emails and I am going to join a Lyme

> group since that seems to be where I need to focus my attentions. I

> want to thank you all for your help and encouragemen through the past

> year and a half. And I want to wish you all Good Luck and Good

> Health! Keep persevering -there is an answer for all of us somewhere

> out there. Please email me directly at Stardantzer@... if you

> wish to reach me. a

>

> " Do me a favor, Doc, Tell me something good. " - Blair - The

> Exorcist

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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In a message dated 6/27/01 2:06:03 AM Eastern Daylight Time,

johnson_cort@... writes:

> You know, given there is no identifiable cause for CFS and the difficulty

> there is in diagnosing Lyme disease - particularly after much time has gone

> by - it might be a good idea to stay in touch with people with CFIDS. THe

> same things they use to boost the immune system, etc. may be applicable to

> Lymes disease. I believe Cheney says it is not so important to find out

> exactly what the bug is as it used to be. THe key is to get the system

>

I thought so too but I am being treated by Dr. ph Burrascano and he told

me to get off all immune modulators at this time. I have been on IP6, Beta

glucan,Immunepro, TF+, MGN3 and several others for months, actually more

tnhan a year w/ no improvemnet except for the MGN3 raising my NK function a

bit. After thinking about my decision to leave the CFS groups I have changed

my mind. I will go 'web only' for now andr post occasionally on my progress.

I am concerned that there might be several PWC's on the list with undiagnosed

Lyme that could benefit from my experiences.

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair -

~~ The Exorcist ~~

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In a message dated 6/27/01 5:00:54 AM Pacific Daylight Time,

StarDantzer@... writes:

> I thought so too but I am being treated by Dr. ph Burrascano and he told

> me to get off all immune modulators at this time. I have been on IP6, Beta

> glucan,Immunepro, TF+, MGN3 and several others for months, actually more

> tnhan a year w/ no improvemnet except for the MGN3 raising my NK function a

> bit. After thinking about my decision to leave the CFS groups I have

> changed

> my mind. I will go 'web only' for now andr post occasionally on my

> progress.

> I am concerned that there might be several PWC's on the list with

> undiagnosed

> Lyme that could benefit from my experiences.

>

> a

a, I am on those immune modulators as well and have Lyme...why did he

tell you to go off them? Thanks, karen

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a,

I don't know whether to say this is good news (that you have Lyme) but I

certainly think you are right in staying around to keep people informed of

your progress. You certainly are in good hands with Burrascano as your

doctor. Is he able to see patients at the moment?

I am in the same situation as yourself, as you already know, and i do check

this list from time to time (not very often these days) but I'd also like to

know that there aren't any undiagnosed Lyme sufferers among people on this

list

Nelly

Re: Re: Goodbye

> In a message dated 6/27/01 2:06:03 AM Eastern Daylight Time,

> johnson_cort@... writes:

>

>

> > You know, given there is no identifiable cause for CFS and the

difficulty

> > there is in diagnosing Lyme disease - particularly after much time has

gone

> > by - it might be a good idea to stay in touch with people with CFIDS.

THe

> > same things they use to boost the immune system, etc. may be applicable

to

> > Lymes disease. I believe Cheney says it is not so important to find out

> > exactly what the bug is as it used to be. THe key is to get the system

> >

>

> I thought so too but I am being treated by Dr. ph Burrascano and he

told

> me to get off all immune modulators at this time. I have been on IP6, Beta

> glucan,Immunepro, TF+, MGN3 and several others for months, actually more

> tnhan a year w/ no improvemnet except for the MGN3 raising my NK function

a

> bit. After thinking about my decision to leave the CFS groups I have

changed

> my mind. I will go 'web only' for now andr post occasionally on my

progress.

> I am concerned that there might be several PWC's on the list with

undiagnosed

> Lyme that could benefit from my experiences.

>

> a

> _________________________________________________________________

> " Do me a favor, doc, tell me something good. " - Blair -

> ~~ The Exorcist ~~

>

>

>

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In a message dated 6/27/01 7:15:02 PM Eastern Daylight Time,

lbinujrsy@... writes:

> a, I am on those immune modulators as well and have Lyme...why did he

> tell you to go off them? Thanks, karen

>

Honestly, , I don't really understand it. It is one of those things

where you are sitting in the doctors office, newly diagnosed after 12 years

of hell, and trying to comprehend how the news you just got changes your

life. I had about 50,000 questions racing through my mind at the time and

managed to articulate 3 or 4. I know he went over my supplement list and

specifically told me to stop several as they are 'contraindicated' for Lyme

in his opinion. I will make a point of asking him at my next visit and let

you know.

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair -

~~ The Exorcist ~~

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  • 3 months later...

Hi Star Dancer:

After 6 years of battling CFIDS and FM .... dead ends, dumb doctors,

and a deteriorating body. I've tested positive for Lymes Disease.

Yet just when I think I will no longer have to battle the unwinnable

policital Controversy around CFIDS/FM anymore ... I find I have just

jumped from the frying pan into the fire ...

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

Harborview used the less accurate Elise Test which resulted in a

Negative for Lymes

Dr. Marcus used the more Accurate Western Blot through IGeneX Labs.

The IgG Negative (though would be positive - if not for the CDC

stringent guidelines which misses over 51% of Lymes)

But did test positive on WB IgM. (Which is valid for chronic Lymes)

Marcus ... says no you don't have Lymes ... but he only looked at the

IgG, and not hte IgM.

So I called Dr. at IGeneX (Lab Director) --- he personnally

looked at my results ... and said Yes .. You are Positive for Lymes.

So I call my Harborview Doc to start treatment for Lymes ... and

guess what ... They will not accept the IGeneX Lab Results.

No ... they would rather set me up for an 8 hour Neuro/Psyc Test!!!

HELP ME BEFORE I KILL SOMEONE!!! (LAUGH)

So here we go again ....

Where is a Lymes Support Group in Seattle?

Any Lyme's Literate Doctors (LLMD) in Seattle?

I need to get on board with this ASAP ... so any insight and leads

you have uncovered is very appreciated!

> In a message dated 6/27/01 2:06:03 AM Eastern Daylight Time,

> johnson_cort@h... writes:

>

>

> > You know, given there is no identifiable cause for CFS and the

difficulty

> > there is in diagnosing Lyme disease - particularly after much

time has gone

> > by - it might be a good idea to stay in touch with people with

CFIDS. THe

> > same things they use to boost the immune system, etc. may be

applicable to

> > Lymes disease. I believe Cheney says it is not so important to

find out

> > exactly what the bug is as it used to be. THe key is to get the

system

> >

>

> I thought so too but I am being treated by Dr. ph Burrascano

and he told

> me to get off all immune modulators at this time. I have been on

IP6, Beta

> glucan,Immunepro, TF+, MGN3 and several others for months, actually

more

> tnhan a year w/ no improvemnet except for the MGN3 raising my NK

function a

> bit. After thinking about my decision to leave the CFS groups I

have changed

> my mind. I will go 'web only' for now andr post occasionally on my

progress.

> I am concerned that there might be several PWC's on the list with

undiagnosed

> Lyme that could benefit from my experiences.

>

> a

>

_________________________________________________________________

> " Do me a favor, doc, tell me something good. " - Blair -

> ~~ The Exorcist ~~

>

>

>

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  • 1 month later...

-I dindt get to know you well but will pray for you and your family.

carol

On Sun, 25 Nov 2001 05:39:47 -0000 Hinna98@... writes:

> I've got to go no mail, for now. Our family has so much to deal with

>

> right now and I have to get away from the computer. Everyone here

> means so much to me....I'll never forget the many acts of kindess

> you

> have shown during 's cancer. Please take care!

>

> Love,

> Hinna

>

>

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  • 1 year later...
  • 5 months later...

To elizabeth and everyone,

While I have gotten so much from this list before and after my revision

surgery this year, I feel it is time for me to leave - for at least a while.

Please unsubscribe me from the list.

Banner RN, CCM, RN-WCCM

Nurse Case Manager

First Rehabilitation Resources, Inc.

336-299-9995 Phone

336-299-3440

Visit to the ortho

>

>

> Just visited the ortho today. He confirmed that my SI joints were

> what was giving me problems. (No real surprise. I kind of thought

> they were the culprits.) Naprosyn (only one tablet taken so far)

> seems to help where Vioxx didn't do anything. He also said to

> continue Vicodin when needed. Another six weeks of PT and perhaps

> injections in the joints...

>

> As troubling as that was, the bulging disc in the neck is of more

> concern right now. At least the SI joints don't hurt when I'm

> sitting still. Can't say that about the neck. Next appointment for

> that is December 4.

>

>

>

> P.S. (Sigh)

>

>

>

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Aw.

Bye, . Hope you'll check in with us occasionally, and let us know how

you're doing!

Visit to the ortho

>

>

> Just visited the ortho today. He confirmed that my SI joints were

> what was giving me problems. (No real surprise. I kind of thought

> they were the culprits.) Naprosyn (only one tablet taken so far)

> seems to help where Vioxx didn't do anything. He also said to

> continue Vicodin when needed. Another six weeks of PT and perhaps

> injections in the joints...

>

> As troubling as that was, the bulging disc in the neck is of more

> concern right now. At least the SI joints don't hurt when I'm

> sitting still. Can't say that about the neck. Next appointment for

> that is December 4.

>

>

>

> P.S. (Sigh)

>

>

>

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I am confused. What is happening here?

Visit to the ortho

>

>

> Just visited the ortho today. He confirmed that my SI joints were

> what was giving me problems. (No real surprise. I kind of thought

> they were the culprits.) Naprosyn (only one tablet taken so far)

> seems to help where Vioxx didn't do anything. He also said to

> continue Vicodin when needed. Another six weeks of PT and perhaps

> injections in the joints...

>

> As troubling as that was, the bulging disc in the neck is of more

> concern right now. At least the SI joints don't hurt when I'm

> sitting still. Can't say that about the neck. Next appointment for

> that is December 4.

>

>

>

> P.S. (Sigh)

>

>

>

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, you need to unsubscribe yourself if that is really what you want to do.

How does this relate to 's S-I joints?

You have been a wonderful contributor to this group. I do not quite get your

sudden departure. I am sorry you feel this way for whatever reason you feel this

way.

Sigh.

Visit to the ortho

>

>

> Just visited the ortho today. He confirmed that my SI joints were

> what was giving me problems. (No real surprise. I kind of thought

> they were the culprits.) Naprosyn (only one tablet taken so far)

> seems to help where Vioxx didn't do anything. He also said to

> continue Vicodin when needed. Another six weeks of PT and perhaps

> injections in the joints...

>

> As troubling as that was, the bulging disc in the neck is of more

> concern right now. At least the SI joints don't hurt when I'm

> sitting still. Can't say that about the neck. Next appointment for

> that is December 4.

>

>

>

> P.S. (Sigh)

>

>

>

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,

I do need to figure out how to unsubscribe myself. Please do not feel that

it has anything to do with the group! The group had been an invaluable

resource to me all through this ordeal...before and after my surgery. I just

feel that for a while I need to " unfocus " as much as I can from my

disability and move forward. I will likely come back at some point when I

feel I've made the progress mentally that I want to make.

Again, thanks to everyone for all the support and information over the

months and I hope everyone gets to where they can be the best they can be.

Banner RN, CCM, RN-WCCM

Nurse Case Manager

First Rehabilitation Resources, Inc.

336-299-9995 Phone

336-299-3440

Visit to the ortho

> >

> >

> > Just visited the ortho today. He confirmed that my SI joints were

> > what was giving me problems. (No real surprise. I kind of thought

> > they were the culprits.) Naprosyn (only one tablet taken so far)

> > seems to help where Vioxx didn't do anything. He also said to

> > continue Vicodin when needed. Another six weeks of PT and perhaps

> > injections in the joints...

> >

> > As troubling as that was, the bulging disc in the neck is of more

> > concern right now. At least the SI joints don't hurt when I'm

> > sitting still. Can't say that about the neck. Next appointment for

> > that is December 4.

> >

> >

> >

> > P.S. (Sigh)

> >

> >

> >

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Goodbye . We will miss you. Come back soon as you can.

........Carol

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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just go to the home page

/ and

look to the right--you will see a link that says " edit my

membership " where you can choose not to receive emails but remain a

member of the group

or you can choose the option " leave group "

we will miss you

> ,

>

> I do need to figure out how to unsubscribe myself. Please do not

feel that

> it has anything to do with the group! The group had been an

invaluable

> resource to me all through this ordeal...before and after my

surgery. I just

> feel that for a while I need to " unfocus " as much as I can from my

> disability and move forward. I will likely come back at some point

when I

> feel I've made the progress mentally that I want to make.

> Again, thanks to everyone for all the support and information over

the

> months and I hope everyone gets to where they can be the best they

can be.

>

> Banner RN, CCM, RN-WCCM

> Nurse Case Manager

> First Rehabilitation Resources, Inc.

> 336-299-9995 Phone

> 336-299-3440

> Visit to the ortho

> > >

> > >

> > > Just visited the ortho today. He confirmed that my SI

joints were

> > > what was giving me problems. (No real surprise. I kind

of thought

> > > they were the culprits.) Naprosyn (only one tablet taken

so far)

> > > seems to help where Vioxx didn't do anything. He also

said to

> > > continue Vicodin when needed. Another six weeks of PT and

perhaps

> > > injections in the joints...

> > >

> > > As troubling as that was, the bulging disc in the neck is

of more

> > > concern right now. At least the SI joints don't hurt when

I'm

> > > sitting still. Can't say that about the neck. Next

appointment for

> > > that is December 4.

> > >

> > >

> > >

> > > P.S. (Sigh)

> > >

> > >

> > >

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  • 3 years later...

WOW...I have never heard of any of those side effects pertaining to

Lexapro. The only side effect I had to beginning Lexi is constant

YAWNING. Anyone else ever had anything like that?

>

> Well I started the Lex at the dose my doc recommended -- 2.5 mg in

the

> mid-a.m., and I had a horrible, horrible experience.

> I was so sick I couldn't sit or stand for more than 15 minutes.

>

> I had throbbing headache, nausea, dizziness, sweating, lethargy,

> constant hunger, diarrhea, jittery inside and emotional flatness &

> numbness. My husband said I was totally spacey and I couldn't

follow a

> train of thought. Nasty, nasty stuff.

>

> Anyway the doc took me off immediately and we're back to the

drawing

> board. Good luck to all of you.

> L

>

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It seems really strange with only 2.5 mg. She must be allergic.

Colleen

singlewyde <singlewyde@...> wrote:

WOW...I have never heard of any of those side effects pertaining to

Lexapro. The only side effect I had to beginning Lexi is constant

YAWNING. Anyone else ever had anything like that?

>

> Well I started the Lex at the dose my doc recommended -- 2.5 mg in

the

> mid-a.m., and I had a horrible, horrible experience.

> I was so sick I couldn't sit or stand for more than 15 minutes.

>

> I had throbbing headache, nausea, dizziness, sweating, lethargy,

> constant hunger, diarrhea, jittery inside and emotional flatness &

> numbness. My husband said I was totally spacey and I couldn't

follow a

> train of thought. Nasty, nasty stuff.

>

> Anyway the doc took me off immediately and we're back to the

drawing

> board. Good luck to all of you.

> L

>

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It seems really strange with only 2.5 mg. She must be allergic.

Colleen

I spoke to her and she's had some liver problems, immunity problems, and is VERY

sensitive to meds. Terry

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I know that IS strange as I am on 10 mg myself. I feel sorry for anyone that

has THAT kind of reaction from such a great med. Good luck and happy smiles to

all!

MsTigerHawk <tigerhawksoars@...> wrote:

It seems really strange with only 2.5 mg. She must be allergic.

Colleen

singlewyde <singlewyde@...> wrote:

WOW...I have never heard of any of those side effects pertaining to

Lexapro. The only side effect I had to beginning Lexi is constant

YAWNING. Anyone else ever had anything like that?

>

> Well I started the Lex at the dose my doc recommended -- 2.5 mg in

the

> mid-a.m., and I had a horrible, horrible experience.

> I was so sick I couldn't sit or stand for more than 15 minutes.

>

> I had throbbing headache, nausea, dizziness, sweating, lethargy,

> constant hunger, diarrhea, jittery inside and emotional flatness &

> numbness. My husband said I was totally spacey and I couldn't

follow a

> train of thought. Nasty, nasty stuff.

>

> Anyway the doc took me off immediately and we're back to the

drawing

> board. Good luck to all of you.

> L

>

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