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Dear anita,

Are you ok??Is the lyme now under control??I hope so...It's so hard

to get through,but keep your spirits up!!!!Take it

easy...Jeanne(Milsun@...)

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Sharon,

your story is a worse case scenario of what many of us with neurological and

cognitive symptoms of Lyme have had to experience from the medical

profession. Bless you for hanging in there. We are lucky to have a physician

like Dr. Fallon who understands what this disease can and does to us. Our

psychiatric manifestations are caused from a bacteria and not from and

organic nature. I wonder how many mental issues are caused from bacteria,

virus and other parasites and all blamed on an organic issue. Bless you for

hanging in there and getting your son to the best.

Regards Carol a Lyme support group leader in Michigan

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Oh Gawd....

Amen to that...lol...

I went through hell trying to get a diagnosis. It was just awful. You can get

my lovely story at http://www.angelfire.com/me2/StarShar/MyStory1.html

I was at the psychiatric ward not once...but twice!! Later I found out that they

wanted to give me shock treatments!! Then when I was " ordered " to go to an

outpatient group session thingy every day, I was so sick I could barely drive

there. When I look back, I can't believe that I didn't get myself in an

accident. And when I did go, I would have to request that I lie down because I

was so sick. Then they would yell at me saying I was faking it trying to get

out the therapy sessions..oh, it just goes on and on!! It was AWFUL. The

workers there told me that the big wig psychiatrist had strict orders on me,

etc.... I was also told not to spend so much time on my pysical

symptoms...etc..etc...I could go on all day about this. It was an abosolute

nightmare. They also pushed all the antidepressants on me. All they did was

make my sypmtoms worse. Even my entire family wrote me off thinking I was

crazy. I cringe just thinking about those days.

Good luck to you and your family.. You are not alone!!

Hugs,

Anita

[ ] Mental

Just joined yesterday and am already learning from you guys.

I want to relate as quickly as I can what we as a family have dealt with,

not to discourage but to warn you of things that may be new to you.

I have had Lyme for atleast 10 years, the rash was thought to be ringworm

back in the early 80's. Didn't get treatment until 92 when an innovative NJ dr.

who is now deceased finally tested me for Lyme with the ELIZA. After IV

treatment for 6 months I had a complete mental breakdown and was catatonic for

almost 3 months. Of course I needed more Lyme treatment but the drs. here

thought it was mental and gave me many happy drugs. After coming back to the

land of living and weaning myself off the stronger drugs I went back and got

tested and was still in need of Lyme therapy. But the drs. here thought it was

bunk. They would rather blame it on mental than deal with Lyme. Why is that?

That should have taught us a lesson but it didn't. My eldest who is almost

20 began showing symptoms his sophomore year. They treated him with sugarwater

(amoxycillin) for 3 weeks and said that was it. Here in Hunterdon County NJ

they should know better. We insisted on more drugs, they refused. He continued

to deteriorate mentally, his personality became different, his grades went down;

they blamed it on mental illness, rebellion, etc. Finally found a dr. who did

the LUAT (Lyme Urine Antigen Test) and his numbers were through the roof (close

to 500 on all three samples) She put him on IV rocephin for 5 months. After

getting negative readings twice he went off drugs. 6 months later he had a

phychotic episode at college and we brought him home and took him to a

pyschiatrist who said he was a acute paranoid schizophrenic and put him on

horrible anitpsychotic drugs. Mike became a zombie, gained close to 60 pounds

and we were told he would end up in a group home or psych ward. Well, we kept

saying, why not test him for Lyme again, the pychiatrist said no, there was no

need. Insurance was a problem so we were stuck. Finally we said the heck with

insurance and took Mike to see Dr. Brain Fallon, a neuro-psychiatrist in NYC.

He ordered a SPECT scan, spinal tap, etc. Well, guess what, he had so much

brain damage from an " organic bacteria " (Lyme) that his blood vessels had shut

down in his brain. It is called hypoprofusion. This was what was causing all

the trouble and behavior. He took Mike off of all the pyschosis meds and put

him on high doses of antibiotics, and a drug called lamitcal for his brain. It

has been 7 months and although Mike is still sick from Lyme, he just completed 2

courses at college and got A's, is working a job and has lost all his weight and

has an active social life. So much for a mental ward! But would you believe

the idiot dr. will not admit he is wrong, though oddly enough he has stopped

sending his bills for payment of thousands in fees. I told his nurse I was

going to get a lawyer for malpractice and it has seemed to stop the bills

atleast.

So, my story is to warn you to never ignore or accept mental illness. With

Lyme, any bizarre characteristic can happen. I feel bad Mike lost over a year

of his life to incompetent drs. But there is a purpose to all things.

I am just trying to be an advocate for my other 2 teens who also have severe

Lyme. It is scary with all 4 of us so sick, I get very tired of trying to make

the right decisions and to weed out what is really going on with us. My husband

is not sick and is wonderful but unless you have walked the Lyme walk, you have

no idea! Do I hear an amen from the crowd!

Has anyone had mental involvment?

Sharon

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yep..I'm ok now. I am much better since then, but I can't really say that it

is " under control " . I've been becomming sensitive to just about every

antibiotic that I try and am now pursuing the " alternative "

route...again....sigh....

take care,

Anita

Re: [ ] Mental

>From: Milsun@...

>

>Dear anita,

> Are you ok??Is the lyme now under control??I hope so...It's so

hard

>to get through,but keep your spirits up!!!!Take it

>easy...Jeanne(Milsun@...)

>

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

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Hi Sharon,

Glad to hear that you found Dr. Fallon and that Mike is doing better! It

is a crime what we all have to go through to finally be properly

diagnosed.

I belong to a local Lyme support group and I've heard the same stories

over and over. Drs. have said: " ...it's all in your head " , or " ...lose

weight and you'll feel better " , or " ...you can't have Lyme with a

negative " ...etc., etc., etc.

The best contribution we can make is to educate these Lyme-iliterate

MDs, so that one day others will not have to go through the torture that

we have had to endure.

Wishing you and your family strength and

peace...Joan LI, NY

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sharon,

welcome.

my daughter (just turned 10) is very sick neuropsychologically with lyme.

your letter came at a good time. i am going to print it out and add it to some

lyme literature to TRY to educate some people.

all my neighbors and some " friends " are giving me a grin and an " oh really " like

i am totally nuts and trying to make excuses for my daughter's behaviors.

if it was a f'ing tumor we would be BURIED in lasagnia and pie.

i am so depressed i can't respond more.

also for everyone else,

i have formatted my hard drive twice in the past 4 days, lost tons of mail, and

that is why i have not been responding or posting to lyme documents.

peace,

kay

[ ] Mental

Just joined yesterday and am already learning from you guys.

I want to relate as quickly as I can what we as a family have dealt with, not

to discourage but to warn you of things that may be new to you.

I have had Lyme for atleast 10 years, the rash was thought to be ringworm back

in the early 80's. Didn't get treatment until 92 when an innovative NJ dr. who

is now deceased finally tested me for Lyme with the ELIZA. After IV treatment

for 6 months I had a complete mental breakdown and was catatonic for almost 3

months. Of course I needed more Lyme treatment but the drs. here thought it was

mental and gave me many happy drugs. After coming back to the land of living

and weaning myself off the stronger drugs I went back and got tested and was

still in need of Lyme therapy. But the drs. here thought it was bunk. They

would rather blame it on mental than deal with Lyme. Why is that?

That should have taught us a lesson but it didn't. My eldest who is almost 20

began showing symptoms his sophomore year. They treated him with sugarwater

(amoxycillin) for 3 weeks and said that was it. Here in Hunterdon County NJ

they should know better. We insisted on more drugs, they refused. He continued

to deteriorate mentally, his personality became different, his grades went down;

they blamed it on mental illness, rebellion, etc. Finally found a dr. who did

the LUAT (Lyme Urine Antigen Test) and his numbers were through the roof (close

to 500 on all three samples) She put him on IV rocephin for 5 months. After

getting negative readings twice he went off drugs. 6 months later he had a

phychotic episode at college and we brought him home and took him to a

pyschiatrist who said he was a acute paranoid schizophrenic and put him on

horrible anitpsychotic drugs. Mike became a zombie, gained close to 60 pounds

and we were told he would end up in a group home or psych ward. Well, we kept

saying, why not test him for Lyme again, the pychiatrist said no, there was no

need. Insurance was a problem so we were stuck. Finally we said the heck with

insurance and took Mike to see Dr. Brain Fallon, a neuro-psychiatrist in NYC.

He ordered a SPECT scan, spinal tap, etc. Well, guess what, he had so much

brain damage from an " organic bacteria " (Lyme) that his blood vessels had shut

down in his brain. It is called hypoprofusion. This was what was causing all

the trouble and behavior. He took Mike off of all the pyschosis meds and put

him on high doses of antibiotics, and a drug called lamitcal for his brain. It

has been 7 months and although Mike is still sick from Lyme, he just completed 2

courses at college and got A's, is working a job and has lost all his weight and

has an active social life. So much for a mental ward! But would you believe

the idiot dr. will not admit he is wrong, though oddly enough he has stopped

sending his bills for payment of thousands in fees. I told his nurse I was

going to get a lawyer for malpractice and it has seemed to stop the bills

atleast.

So, my story is to warn you to never ignore or accept mental illness. With

Lyme, any bizarre characteristic can happen. I feel bad Mike lost over a year

of his life to incompetent drs. But there is a purpose to all things.

I am just trying to be an advocate for my other 2 teens who also have severe

Lyme. It is scary with all 4 of us so sick, I get very tired of trying to make

the right decisions and to weed out what is really going on with us. My husband

is not sick and is wonderful but unless you have walked the Lyme walk, you have

no idea! Do I hear an amen from the crowd!

Has anyone had mental involvment?

Sharon

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> Just joined yesterday and am already learning from you guys.

> Has anyone had mental involvment?Sharon

Hi Sharon,

Welcome to the list!

My husband, son and I all have mental involvement. My psychologist added a

diagnosis to list, Personality Change due to physical illness.

My husband is trying to get all of Dr. Bransfield's info to his therapist.

http://mentalhealthandillness.com/lymeframes.html

This will help his therapist see that his " mental problems " are a result of

Lyme Disease rather than childhood issues. I have encouraged my husband to

obtain as much info [ammunition] as possible to send/bring to his therapist.

My doctor says my Lyme is mostly brain involvement, neurological and

psychiatric.

Kiana Rossi

mailto:bornfree@...

Northern California

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Hi Sharon,

Just wanted to drop you a quick line and welcome you to the list, your story

is so sad, but again so common. Was the doctor you saw in 1992, Dr Bleiweiss

from NJ? Just curious, he is sorely missed, I never knew him as my tick bite

was in 1996 and he was already gone. Your son's story is heartwarming that he

was able to conquer his mental problems with the help of Dr Fallon is

encouraging for all who suffer from the neurological effects of this disease.

You mention in your letter that you are trying to advocate for two teens also

suffering now with Lyme disease. If they are online, you may want to recommend

out Lyme-teens list for them, to subscribe all they need do is send a blank

email to:

Lyme-teens-subscribeonelist They will receive confirmation email, once

they reply to the confirmation they will receive list messages the same as

Lyme-aid.

Hang in there, you are a welcome addition to this list,

Hugs,

Marta (NJ)

Just joined yesterday and am already learning from you guys.

I want to relate as quickly as I can what we as a family have dealt with,

not to discourage but to warn you of things that may be new to you.

I have had Lyme for atleast 10 years, the rash was thought to be ringworm

back in the early 80's. Didn't get treatment until 92 when an innovative NJ dr.

who is now deceased finally tested me for Lyme with the ELIZA. After IV

treatment for 6 months I had a complete mental breakdown and was catatonic for

almost 3 months. Of course I needed more Lyme treatment but the drs. here

thought it was mental and gave me many happy drugs. After coming back to the

land of living and weaning myself off the stronger drugs I went back and got

tested and was still in need of Lyme therapy. But the drs. here thought it was

bunk. They would rather blame it on mental than deal with Lyme. Why is that?

That should have taught us a lesson but it didn't. My eldest who is almost

20 began showing symptoms his sophomore year. They treated him with sugarwater

(amoxycillin) for 3 weeks and said that was it. Here in Hunterdon County NJ

they should know better. We insisted on more drugs, they refused. He continued

to deteriorate mentally, his personality became different, his grades went down;

they blamed it on mental illness, rebellion, etc. Finally found a dr. who did

the LUAT (Lyme Urine Antigen Test) and his numbers were through the roof (close

to 500 on all three samples) She put him on IV rocephin for 5 months. After

getting negative readings twice he went off drugs. 6 months later he had a

phychotic episode at college and we brought him home and took him to a

pyschiatrist who said he was a acute paranoid schizophrenic and put him on

horrible anitpsychotic drugs. Mike became a zombie, gained close to 60 pounds

and we were told he would end up in a group home or psych ward. Well, we kept

saying, why not test him for Lyme again, the pychiatrist said no, there was no

need. Insurance was a problem so we were stuck. Finally we said the heck with

insurance and took Mike to see Dr. Brain Fallon, a neuro-psychiatrist in NYC.

He ordered a SPECT scan, spinal tap, etc. Well, guess what, he had so much

brain damage from an " organic bacteria " (Lyme) that his blood vessels had shut

down in his brain. It is called hypoprofusion. This was what was causing all

the trouble and behavior. He took Mike off of all the pyschosis meds and put

him on high doses of antibiotics, and a drug called lamitcal for his brain. It

has been 7 months and although Mike is still sick from Lyme, he just completed 2

courses at college and got A's, is working a job and has lost all his weight and

has an active social life. So much for a mental ward! But would you believe

the idiot dr. will not admit he is wrong, though oddly enough he has stopped

sending his bills for payment of thousands in fees. I told his nurse I was

going to get a lawyer for malpractice and it has seemed to stop the bills

atleast.

So, my story is to warn you to never ignore or accept mental illness. With

Lyme, any bizarre characteristic can happen. I feel bad Mike lost over a year

of his life to incompetent drs. But there is a purpose to all things.

I am just trying to be an advocate for my other 2 teens who also have severe

Lyme. It is scary with all 4 of us so sick, I get very tired of trying to make

the right decisions and to weed out what is really going on with us. My husband

is not sick and is wonderful but unless you have walked the Lyme walk, you have

no idea! Do I hear an amen from the crowd!

Has anyone had mental involvment?

Sharon

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Hi Anita,

I read your website, just after reading Sharon's post about the mental

problems she and her son suffered....all I can say is you are all so courageous.

What a horrible thing to have to deal with, not only being sick through no fault

of your own and to be labeled a mental case as well and going to a psychiatric

ward twice. I also enjoyed the rest of your website, and your pictures too,

your entire family are gorgeous, I wish you all the best.

Hugs,

Marta (NJ)

--

Oh Gawd....

Amen to that...lol...

I went through hell trying to get a diagnosis. It was just awful. You can

get my lovely story at http://www.angelfire.com/me2/StarShar/MyStory1.html

I was at the psychiatric ward not once...but twice!! Later I found out that

they wanted to give me shock treatments!! Then when I was " ordered " to go to an

outpatient group session thingy every day, I was so sick I could barely drive

there. When I look back, I can't believe that I didn't get myself in an

accident. And when I did go, I would have to request that I lie down because I

was so sick. Then they would yell at me saying I was faking it trying to get

out the therapy sessions..oh, it just goes on and on!! It was AWFUL. The

workers there told me that the big wig psychiatrist had strict orders on me,

etc.... I was also told not to spend so much time on my pysical

symptoms...etc..etc...I could go on all day about this. It was an abosolute

nightmare. They also pushed all the antidepressants on me. All they did was

make my sypmtoms worse. Even my entire family wrote me off thinking I was

crazy. I cringe just thinking about those days.

Good luck to you and your family.. You are not alone!!

Hugs,

Anita

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Hi Kay,

Your story, with Meredith and Sharon's and Anita's have left me so

discouraged, it is so sad that mental problems have such stigma. I can imagine

your fury at the damn neighbors who cannot understand that your daughter is

physically sick, you are so right about the tumor analogy.....it is so unfair.

I have a hunch that we can preach till we are blue in the face about the hazards

of Lyme disease physically and mentally but it will fall on deaf ears, this is

something one has to experience or live with themselves to get the true

understanding. I know that all on this list who have suffered from this horrid

disease are now more tolerant of those who suffer any chronic disease, be it

schizophrenia or cancer.

Don't worry about keeping up Lyme-documents, your daughter comes first, and

this list and Lyme documents can wait.

Hugs to you both,

Marta

sharon,

welcome.

my daughter (just turned 10) is very sick neuropsychologically with lyme.

your letter came at a good time. i am going to print it out and add it to

some lyme literature to TRY to educate some people.

all my neighbors and some " friends " are giving me a grin and an " oh really "

like i am totally nuts and trying to make excuses for my daughter's behaviors.

if it was a f'ing tumor we would be BURIED in lasagnia and pie.

i am so depressed i can't respond more.

also for everyone else,

i have formatted my hard drive twice in the past 4 days, lost tons of mail,

and that is why i have not been responding or posting to lyme documents.

peace,

kay

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In a message dated 7/10/99 2:10:00 PM Eastern Daylight Time, EJFisch@...

writes:

<< Sharon,

your story is a worse case scenario of what many of us with neurological and

cognitive symptoms of Lyme have had to experience from the medical

profession. Bless you for hanging in there. We are lucky to have a physician

like Dr. Fallon who understands what this disease can and does to us. Our

psychiatric manifestations are caused from a bacteria and not from and

organic nature. I wonder how many mental issues are caused from bacteria,

virus and other parasites and all blamed on an organic issue. Bless you for

hanging in there and getting your son to the best.

Regards Carol a Lyme support group leader in Michigan

>>

HI Sharon and Carol.... I am so happy for you guys cuz you

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In a message dated 7/10/99 2:10:00 PM Eastern Daylight Time, EJFisch@...

writes:

<< Sharon,

your story is a worse case scenario of what many of us with neurological and

cognitive symptoms of Lyme have had to experience from the medical

profession. Bless you for hanging in there. We are lucky to have a physician

like Dr. Fallon who understands what this disease can and does to us. Our

psychiatric manifestations are caused from a bacteria and not from and

organic nature. I wonder how many mental issues are caused from bacteria,

virus and other parasites and all blamed on an organic issue. Bless you for

hanging in there and getting your son to the best.

Regards Carol a Lyme support group leader in Michigan

>>

Hi Sharon and Carol,

I am so happy for you guys bcuz you DO have the best doctor. I saw Dr. Fallon

for a consult a couple of years ago.. but he unfortunately was not seeing any

new patients. I have terrible neuro problems... sometimes even suicidal...

split personality ..very weird head feelings. I NEED to see him so badly, cuz

I know he is the ONLY one who understands. I have seen somany different docs

for my neuro problems.. but they say it is all in my head.. NO KIDDING !!! I

have tried to contact Fallon but just cannot reach him. God, If you ever hear

of him seeing new patients PLEASEEEE let me know. I will owe you for life : )

Be well and God Bless,

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In a message dated 7/13/99 2:31:52 PM Eastern Daylight Time,

Namkrats3@... writes:

<< Hi .

I just read your post and feel so sorry for what you are going through.

This might sound like a dumb idea, but maybe you should write a letter

to Dr. Fallon telling him about your problems with finding a LL

Psychiatrist. If he can't see you as a patient, maybe he can refer you

to a LLMD that will work with him on a consultation basis or at least

someone who understands the psychological manifestations of LD.

Good Luck, Joan LI, NY >>

Hi Joan,

Thank you for the advice and for understanding. I will write him another

letter , that is a good idea. I just hope he gets it this time. :) I just

read ur post also, and I am so sorry for all that u are going through also .

This disease is awful, but it helps me so much to know that there are people

like you here that I can come to and vent. People who have and know abt lyme.

Its a great relief. I love you guys.

Feel Better {{{{{Joan}}}}}}

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Joan and ,

I see Dr. Fallon and he put me on a supplement called SAM-E for depression.

It is similar to St. s Wart but it also helps joint pains. I think it is

helping me with my mental attitiude but it takes about two weeks to start

working? Hope this helps a little -Val

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Hi .

I just read your post and feel so sorry for what you are going through.

This might sound like a dumb idea, but maybe you should write a letter

to Dr. Fallon telling him about your problems with finding a LL

Psychiatrist. If he can't see you as a patient, maybe he can refer you

to a LLMD that will work with him on a consultation basis or at least

someone who understands the psychological manifestations of LD.

Good Luck, Joan LI, NY

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In a message dated 7/13/99 5:33:15 PM Eastern Daylight Time, ValP74@...

writes:

<< Joan and ,

I see Dr. Fallon and he put me on a supplement called SAM-E for depression.

It is similar to St. s Wart but it also helps joint pains. I think it is

helping me with my mental attitiude but it takes about two weeks to start

working? Hope this helps a little -Val >>

HI Val,

Thanks for writing, where do you get SAM-E? Do you need an Rx or can you get

it at the health food store ?

Wondering ,

: )

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In a message dated 7/13/99 6:24:39 PM Eastern Daylight Time,

Namkrats3@... writes:

<< Hi {{{{{}}}}},

Thanks for the support. We all need eachother. I hope that Dr. Fallon

reads your letter. Maybe sending it registered mail would bring more

attention to it. There has got to be a way to get his attention.....Hang

in there. Joan LI, NY >>

Thanks Joan,

Your the best. I will let you know if I ever DO get the appt.

BIG HUGS

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Hi {{{{{}}}}},

Thanks for the support. We all need eachother. I hope that Dr. Fallon

reads your letter. Maybe sending it registered mail would bring more

attention to it. There has got to be a way to get his attention.....Hang

in there. Joan LI, NY

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Beware folks...not all SAMe is the same...should come from Europe

Byron

Re: [Lyme-aid] Mental

>From: ValP74@...

>

>

>In a message dated 7/13/99 10:03:16 PM, BearyPrety@... writes:

>

><< HI Val,

>Thanks for writing, where do you get SAM-E? Do you need an Rx or can you

get

>it at the health food store ?

>Wondering ,

> : ) >>

>

>SAM-E has been used for over twenty years in Europe but is relatively new

>here in the US. Itis sold in a lot of health food stores. i found that the

>Vitamin Shoppe has it for the cheapest price so far anyway. Good Luck. Feel

>better-Val

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

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Documents

>Email: -subscribeonelist

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

>the word " subscribe " ( " normal " is the opposite of " digest " )

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In a message dated 7/13/99 10:03:16 PM, BearyPrety@... writes:

<< HI Val,

Thanks for writing, where do you get SAM-E? Do you need an Rx or can you get

it at the health food store ?

Wondering ,

: ) >>

SAM-E has been used for over twenty years in Europe but is relatively new

here in the US. Itis sold in a lot of health food stores. i found that the

Vitamin Shoppe has it for the cheapest price so far anyway. Good Luck. Feel

better-Val

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In a message dated 7/13/99 10:03:18 PM Eastern Daylight Time,

BearyPrety@... writes:

<< Thanks for writing, where do you get SAM-E? Do you need an Rx or can you

get

it at the health food store ?

Wondering , >>

Costco just started carrying it...expensive 50$ a bottle, but I am sure it is

a larger quantity than you would get for the same $ at a health food

store...no prescription needed B

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In a message dated 7/14/99 10:34:23 PM Eastern Daylight Time,

F.Byron@... writes:

<< Beware folks...not all SAMe is the same...should come from Europe

>>

thanks for that little bit of info Byron..I am on my way out to pick it up

tomorrow. Do you think this is something I can take without having to ask my

doc? I mean is it like a supplement or herb? And do you thin it is okay to

take with other supplements, like cOq10? I take 240mgs of that daily trying

to work my way up to 600 mgs daily. Just wondering what your thoughts are abt

that ?

Thanks

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In a message dated 99-07-14 11:58:03 EDT, you write:

<< : Namkrats3@... (Joan S.)

Hi Val,

Thanks for the info on SAM-E. I will ask my Doc about it. Glad to hear

that it seems to be helping you.

Take care, Joan LI, NY

>>

Where do you get SAM-E? I saw a letter requesting that information, but I

didn't see any answer yet.. Is it an otc drug or a prescription drug?

thanks,

elizabeth

md

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