Re: doctors.....what do they know

[Guest guest]

hi gang.....had to tell u about my doctors visit today....as most of u know i

am on ssd.....i no longer have medical bennys except for medicare and i do

almost all my medical at the vets hospital......due to no ins. i only see my

llmd rarely though we e mail and talk all the time( he lives outta

state......well.....my primary doc at the va decided i should see an

infetious disease doc.....she had me take a TITRE TEST??

i told her that NOBODY does titre's anymore but????? well today i saw the

infectious disease doc.....brought with me dr b's protocol......she asked me

why i was there....i said chronic lyme she Questioned why i thought i have

chronic lyme......i told her i am on ssd for lyme ,retired from my job due to

lyme have seeen millions of docs in connection with ssd,pension and my

workmans comp suit....even the infamous leeny sigal( all the docs at the va

quote him) and informed her that they all agree i have chronic lyme.....( yep

even the " weasel).....so that kinda shut her up.......then SHE ASKED ME IF I

HAD GOTTEN THE VACCING YET? in my straightest face i asked her if she was

crazy!!!! and explained to her that people with active lyme cannot take the

vaccine....??????? well let me put it this way i spent about an hour teaching

her about lyme( thinking of getting a job in med school....lyme 101) the god

send is that i can now get my abx thru them( for $2) like i do with all my

other meds......she told me just tell me what u want.....u know more than i

do( nice of her to admit it huh??????) about lyme.....so i will keep talking

to my llmd and when we decide i should do another course of abx .....i can

get trhem thru the va.....DO THE TEACH ANYTHING ABOUT LYME IN MED SCHOOL?????

THOUGHT u'd all get a chuckle from my day.....unfortunatly its really not

funny but is the norm as we all know.....to be so sick and yet so smart.......

well i have rambled long enuff ( i hate long posts normally) love and prayers

to all!!!!

Reid

[Guest guest]

Reid,

It's hard to believe that a doctor who specilizes in infectious disease

doesn't know anything about one of the fastest growing infectious diseases.

Isn't Lyme second right behind Aids? The doctors better get there acts

together!!!

[Guest guest]

Reid,

I saw the infectious disease doctor here in my hometown. She just

treats my pain, but does not think I have Lyme and a co-infection. She

knows I am being treated by my doctor in Colmar. Which I might add, I was

almost dead by the time I found him.

My last visit to her she asked me if I wanted to receive the vaccine. I

was at a loss for words (at first). Then I told her that I already had

lyme. My doctor in Pa. told me if she were to give me that vaccine, it

could kill me.

I told her that these doctor's are playing russian rullet with people's

lives with this vaccine. Anyway, I see her tomorrow and I am taking in all

the info I can hoping she will take the time to read some of it.

Dr. B is sending me to Long Island to an infectious disease doctor who

will over ride my ins. co. They cut off my I.V. Anyway, I hope it is not

the same one you saw. These doctors are dangerous...

Re: [Lyme-aid] doctors.....what do they know

>From: RMcmur3194@...

>

>hi gang.....had to tell u about my doctors visit today....as most of u know

i

>am on ssd.....i no longer have medical bennys except for medicare and i do

>almost all my medical at the vets hospital......due to no ins. i only see

my

>llmd rarely though we e mail and talk all the time( he lives outta

>state......well.....my primary doc at the va decided i should see an

>infetious disease doc.....she had me take a TITRE TEST??

>i told her that NOBODY does titre's anymore but????? well today i saw the

>infectious disease doc.....brought with me dr b's protocol......she asked

me

>why i was there....i said chronic lyme she Questioned why i thought i have

>chronic lyme......i told her i am on ssd for lyme ,retired from my job due

to

>lyme have seeen millions of docs in connection with ssd,pension and my

>workmans comp suit....even the infamous leeny sigal( all the docs at the va

>quote him) and informed her that they all agree i have chronic

yme.....( yep

>even the " weasel).....so that kinda shut her up.......then SHE ASKED ME IF

I

>HAD GOTTEN THE VACCING YET? in my straightest face i asked her if she

was

>crazy!!!! and explained to her that people with active lyme cannot take the

>vaccine....??????? well let me put it this way i spent about an hour

teaching

>her about lyme( thinking of getting a job in med school....lyme 101) the

god

>send is that i can now get my abx thru them( for $2) like i do with all my

>other meds......she told me just tell me what u want.....u know more than i

>do( nice of her to admit it huh??????) about lyme.....so i will keep

talking

>to my llmd and when we decide i should do another course of abx .....i can

>get trhem thru the va.....DO THE TEACH ANYTHING ABOUT LYME IN MED

SCHOOL?????

>THOUGHT u'd all get a chuckle from my day.....unfortunatly its really not

>funny but is the norm as we all know.....to be so sick and yet so

smart.......

>well i have rambled long enuff ( i hate long posts normally) love and

prayers

>to all!!!!

>Reid

>

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[Guest guest]

Hi Reid,

God Bless you for educating another doctor about Lyme, and an Infectious

Disease doc to boot.....good for you. Really glad to see that you can now

get your meds for $2. That's fantastic,

Hugs,

Marta

>From: RMcmur3194@...

>

>hi gang.....had to tell u about my doctors visit today....as most of u know

i

>am on ssd.....i no longer have medical bennys except for medicare and i do

>almost all my medical at the vets hospital......>

[Guest guest]

Hi Reid,

I couldn't believe what you were told either!!!!!!!!!!!!! Just last week I

had a yearly (last one--do not care for her) visit with an endocrinologist. I

have

a multi-nodular goiter (thyroid) and was slightly hyperthyroid 3 years ago and

now

am slightly hypo thyroid. I have a hickman in (almost a year now) my chest and

have all the tickborne diseases and viruses too. You know my story by now. I too

cannot work as a nurse or anything else. OK, this doctor comes in and says. " you

STILL have trouble with that Lyme? " I say, " yes I sure do "

She says, " WHY DON'T YOU GET THE VACCINE?????????!!!!!!!!!!!!! " I did the same

thing you did. Was absolutely shocked. Tried to educate her too and she

says, " that

is not what the DRUG salesman said!!!!!!!!!!!!!!!!!!!!' SHOOT ME! Finally she

also

said, " you probably know more than I do about Lyme " . I agreed. I left Dr. B's

protocal on the desk but noticed when I was leaving, she had just left it there.

Probably will never open it. So sad. I say these people are sending us out the

doors with a death sentance without even knowing it. Telling us to get the

vaccine

is like telling a polio victim to take the polio vaccine and get out of a

wheelchair and walk. My 2 cents. You are right, we are smart, very smart.

Your friend Helen in NJ

May 26th 7-9PM Wed,---- Long Valley Lyme Disease Support Group Meeting

ALWAYS the 4th Wed each month

Our Lady of the Mountain Church

Schooleys Mountain

Schooleys Mountain, NJ

RMcmur3194@... wrote:

> From: RMcmur3194@...

>

> hi gang.....had to tell u about my doctors visit today....as most of u know i

> am on ssd.....i no longer have medical bennys except for medicare and i do

> almost all my medical at the vets hospital......due to no ins. i only see my

> llmd rarely though we e mail and talk all the time( he lives outta

> state......well.....my primary doc at the va decided i should see an

> infetious disease doc.....she had me take a TITRE TEST??

> i told her that NOBODY does titre's anymore but????? well today i saw the

> infectious disease doc.....brought with me dr b's protocol......she asked me

> why i was there....i said chronic lyme she Questioned why i thought i have

> chronic lyme......i told her i am on ssd for lyme ,retired from my job due to

> lyme have seeen millions of docs in connection with ssd,pension and my

> workmans comp suit....even the infamous leeny sigal( all the docs at the va

> quote him) and informed her that they all agree i have chronic lyme.....( yep

> even the " weasel).....so that kinda shut her up.......then SHE ASKED ME IF I

> HAD GOTTEN THE VACCING YET? in my straightest face i asked her if she was

> crazy!!!! and explained to her that people with active lyme cannot take the

> vaccine....??????? well let me put it this way i spent about an hour teaching

> her about lyme( thinking of getting a job in med school....lyme 101) the god

> send is that i can now get my abx thru them( for $2) like i do with all my

> other meds......she told me just tell me what u want.....u know more than i

> do( nice of her to admit it huh??????) about lyme.....so i will keep talking

> to my llmd and when we decide i should do another course of abx .....i can

> get trhem thru the va.....DO THE TEACH ANYTHING ABOUT LYME IN MED SCHOOL?????

> THOUGHT u'd all get a chuckle from my day.....unfortunatly its really not

> funny but is the norm as we all know.....to be so sick and yet so smart.......

> well i have rambled long enuff ( i hate long posts normally) love and prayers

> to all!!!!

> Reid

>

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

> ONElist: bringing the world together.

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

[Guest guest]

Marta,

I would be scared to death to take the vaccine even if my blood studies

showed everything was clear. I mean, since the test are not always

accurate, who knows what could happen......I guess I have been so sick, I

have become parinoid....

Re: [Lyme-aid] doctors.....what do they know

>From: " J & M McCoy " <mlmccoy@...>

>

>Hi and Reid,

> I saw my LLMD this Saturday, he told me and my husband he will try the

>vaccine himself once his blood studies come back showing he is clear of

>Lyme. My husband and I were astounded. He explained his thought process

on

>taking it, but I just can't recall what he said...damn Lyme. I told him as

>I was leaving that he should remember poor Doctor Drulle, before he dabbles

>with the vaccine. He just shrugged his shoulders. Dr. Drulle is a doctor

in

>NJ who took part in the vaccine trials, I think it was Connaught though, he

>has been seriously ill ever since, I don't think he is able to practice

>anymore. Well, I will keep you posted as I hear more about his taking the

>vaccine, I wonder if a SKB salesman got to him??

>Perplexed,

>Marta

>

>

>

>

>

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[Guest guest]

,

I agree, this makes no sense to me whatsoever, I wonder if my Lyme

doctor is losing his mind? He is the only one locally who takes my

insurance, I just don't know what to do. I wish I had paid more attention

to what he was saying his reasoning was.

Marta

>From: " Girard " <ranlin@...>

>

>Marta,

> I would be scared to death to take the vaccine even if my blood studies

>showed everything was clear. I mean, since the test are not always

>accurate, who knows what could happen......I guess I have been so sick, I

>have become parinoid....

[Guest guest]

Hi Helen,

You know I can excuse a nonmedical person for suggesting someone with

Lyme disease to get the Lyme vaccine, thinking it will cure them. But a

doctor?????? This is just too, too dumb. I think you are probably right,

she is hopeless and will never read what you left for her. Make sure you

don't recommend her to any of your friends.....geesh!

Marta

>From: liveitup <liveitup@...>

>

>Hi Reid,

> I couldn't believe what you were told either!!!!!!!!!!!!! Just last

week I

>had a yearly (last one--do not care for her) visit with an endocrinologist.

I have

>a multi-nodular goiter (thyroid) and was slightly hyperthyroid 3 years ago

and now

>am slightly hypo thyroid. I have a hickman in (almost a year now) my chest

and

>have all the tickborne diseases and viruses too. You know my story by now.

I too

>cannot work as a nurse or anything else. OK, this doctor comes in and says.

" you

>STILL have trouble with that Lyme? " I say, " yes I sure do "

>She says, " WHY DON'T YOU GET THE VACCINE?????????!!!!!!!!!!!!! " I did the

same

>thing you did. Was absolutely shocked. Tried to educate her too and she

says, " that

>is not what the DRUG salesman said!!!!!!!!!!!!!!!!!!!!' SHOOT ME!

[Guest guest]

Hi Marta

Have you been on ceftin before and if so, did you find that it was anywhere

near as helpful as IV? How is it helping you now?

thank you in advance

lea

>

> HI ,

> I will have Lyme for three years, this coming August. I am on 1500mg of

> Ceftin and 250mg of Zithromax daily, I have had one 6 week round of IV

> therapy in January 98. No, my doctor did not offer me the vaccine, he said

> he was going to take it himself, he says he wants the protection from

> another bite. I was astounded, and reminded him of all the side effects of

> the disease when you have active Lyme, he says he will not get the vaccine

> until after his blood work comes back clear. Since Lyme tests stink, I

> think he is nuts.

> Anyway, not me, no vaccine for me.

> Marta

[Guest guest]

HI ,

I will have Lyme for three years, this coming August. I am on 1500mg of

Ceftin and 250mg of Zithromax daily, I have had one 6 week round of IV

therapy in January 98. No, my doctor did not offer me the vaccine, he said

he was going to take it himself, he says he wants the protection from

another bite. I was astounded, and reminded him of all the side effects of

the disease when you have active Lyme, he says he will not get the vaccine

until after his blood work comes back clear. Since Lyme tests stink, I

think he is nuts.

Anyway, not me, no vaccine for me.

Marta

>From: " Girard " <ranlin@...>

>

>Marta,

> How long have you had lyme? Are you on medication? Did you say that

>your lyme doctor wanted to give you the vaccine? Or did I misunderstand?

>If he does want to give you the vaccine....tell him absolutely not! Sorry

>so many questions all at once...

>-

[Guest guest]

Marta,

How long have you had lyme? Are you on medication? Did you say that

your lyme doctor wanted to give you the vaccine? Or did I misunderstand?

If he does want to give you the vaccine....tell him absolutely not! Sorry

so many questions all at once...

Re: [Lyme-aid] doctors.....what do they know

>From: " J & M McCoy " <mlmccoy@...>

>

>,

> I agree, this makes no sense to me whatsoever, I wonder if my Lyme

>doctor is losing his mind? He is the only one locally who takes my

>insurance, I just don't know what to do. I wish I had paid more attention

>to what he was saying his reasoning was.

>Marta

>

>

>>From: " Girard " <ranlin@...>

>>

>>Marta,

>> I would be scared to death to take the vaccine even if my blood

studies

>>showed everything was clear. I mean, since the test are not always

>>accurate, who knows what could happen......I guess I have been so sick, I

>>have become parinoid....

>

>

>

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>

[Guest guest]

I am with you , I will NEVER take that vaccine. There isn't enough

research to make me even think of it,

I know what they are doing, only tell the good responses from the trials.

they take out full page ads here. Go sponser tables at the Expo shows, Every

doctor, plant, place of work here has been contacted by SKB. I think in

5-10years we are going to have a whole bunch of really sick people and they

willnever figure it out.

Hugs,

Connie

[Guest guest]

In a message dated 5/12/1999 5:15:40 AM Eastern Daylight Time,

mlmccoy@... writes:

<< Most of my major aches and pains are

neuropathies, numbness in extremities, and burning pain, I think that is

from the nerve damage that this disease created, not sure if any abx would

help me at this point. >>

Marta: Have you every been on a combination of Biaxin/Plaquenil? The

symptoms you mention were some of the " last " that seemed to be having

problems with before tryping the above combination rx. I have been totally

" normal " now for one year this month after taking the Biaxin/Plaquenil for

nine months. Just a thought . Mona

[Guest guest]

Hi Lea,

The IV therapy (6 weeks) I had gave me two glorious weeks of feeling

normal. I have not felt as good since. The Ceftin must be helping

somewhat, as my mind is much clearer than it was before,

herxes are not as bad as they were when I first started the orals. Prior to

being on Ceftin, I was on Cefzil for a short time, that did nothing. Prior

to that I was on doxycycline and Zithromax for about 15 months. I wonder if

Ceftin is not doing the job anymore? Most of my major aches and pains are

neuropathies, numbness in extremities, and burning pain, I think that is

from the nerve damage that this disease created, not sure if any abx would

help me at this point.

Feel good,

Marta

>From: Memyo@...

>

>Hi Marta

>Have you been on ceftin before and if so, did you find that it was anywhere

>near as helpful as IV? How is it helping you now?

>thank you in advance

>lea

>>

[Guest guest]

In a message dated 5/12/1999 9:57:03 AM Eastern Daylight Time,

mlmccoy@... writes:

<< My husband promised me there would be no stress.....HA!!!

Hanging in there best I can, >>

Marta: I used (use) Kava for stress and anxiety. Works well for me; but not

for everyone. Mona

[Guest guest]

Hi ona, I have read about your story beforea nd am so happy to hear you are

still well!! I was just wondering if this combo gave you any severe herxs and

if so how long did they last. Continue to stay well. God Bless you! -Val

[Guest guest]

In a message dated 5/12/1999 1:52:00 PM Eastern Daylight Time, ValP74@...

writes:

<< any severe herxs >>

Hi, Val:

As a matter of fact I had the herx from hell from the day after Christmas

until a couple days past New Years............those are the times when I

just tell my husband to " leave me alone in my misery " ..........he knows the

program by now ) . That was the first new years eve in 25 years that we

didn't spend it with our two very best friends. On one hand I felt very

disappointed and on the other hand I felt so horrible it really didn't

matter........

Mona

[Guest guest]

Hi Mona,

Thanks for the suggestion, I will discuss with my doctor after we move, I

am just too afraid to start new meds in the midst of all this chaos. In the

meantime my doctor suggested I increase my Neurontin gradually to 600mg a

day. My husband promised me there would be no stress.....HA!!!

Hanging in there best I can,

Hugs,

Marta

>From: WISHXXX@...

>

>

>Marta: Have you every been on a combination of Biaxin/Plaquenil? The

>symptoms you mention were some of the " last " that seemed to be having

>problems with before tryping the above combination rx. I have been totally

> " normal " now for one year this month after taking the Biaxin/Plaquenil for

>nine months. Just a thought . Mona

[Guest guest]

Marta,

I saw my regular doctor today for my pain meds. She is actually a Lyme

Disease Doc. I may have told you that, but my memory is so bad, I have

forgotton what it was like to have one. I took in a ton of info. to her.

She had no way of escaping because I was paying for the office call. By the

time I got done, I actually think I got through to her. Before I left, she

said " Thank-you for the teaching " . I think she really meant it. So, I

guess we just have to be persistant with these doctors. Collect as much

info as one can and go ready to let them know that they are not dealing

with dummies.....Hugs to you

Re: [Lyme-aid] doctors.....what do they know

>From: " J & M McCoy " <mlmccoy@...>

>

>HI ,

> I will have Lyme for three years, this coming August. I am on 1500mg of

>Ceftin and 250mg of Zithromax daily, I have had one 6 week round of IV

>therapy in January 98. No, my doctor did not offer me the vaccine, he said

>he was going to take it himself, he says he wants the protection from

>another bite. I was astounded, and reminded him of all the side effects of

>the disease when you have active Lyme, he says he will not get the vaccine

>until after his blood work comes back clear. Since Lyme tests stink, I

>think he is nuts.

>Anyway, not me, no vaccine for me.

>Marta

>

>

>>From: " Girard " <ranlin@...>

>>

>>Marta,

>> How long have you had lyme? Are you on medication? Did you say that

>>your lyme doctor wanted to give you the vaccine? Or did I misunderstand?

>>If he does want to give you the vaccine....tell him absolutely not! Sorry

>>so many questions all at once...

>>-

>

>

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[Guest guest]

In a message dated 5/13/1999 5:21:35 AM Eastern Daylight Time,

mlmccoy@... writes:

<< I was on Xanax, but that made me too sleepy >>

Marta:

I was also prescribed Xanax but I tried to find something that would work

for me that was a rx. I was on so many prescriptions already that I tried to

find something more natural. I still use the Kava now when the world starts

spinning too fast and I just feel like I want to jump off.

Hope and praying for everyone,

Mona

[Guest guest]

Thanks Mona,

I am on ativan, for heart pounding I seem to get each and every morning,

I guess it helps some. I was on Xanax, but that made me too sleepy. I had

to get out of bed last night after tossing and turning with thousands of

thoughts going through my head, and had to take a Xanax to get some rest.

Hugs,

Marta

>From: WISHXXX@...

>

>Marta: I used (use) Kava for stress and anxiety. Works well for me; but

not

>for everyone. Mona

>

[Guest guest]

Hi ,

How terrific that your Lyme doc was receptive to the material you brought

in for your visit. Before I found my present doc, I tried to share

something from the internet with my ex-primary doctor. I handed it to him,

and he visibly recoiled, and would not even take it from my hand....then he

lectured me about giving too much credence to things I read on the internet.

Needless to say, I dropped that creep real fast.

After changing primaries, I was referred to an Inf. Disease doctor, I

tried to take him pictures of my bulls-eye and various other rashes, he

barely glimpsed at them, and later wrote to my primary that I was in need of

a psychiatrist as I was obsessed with Lyme disease.....I lost a lot of faith

in doctors after those two idiots.

Hugs,

Marta

>From: " Girard " <ranlin@...>

>

>Marta,

> I saw my regular doctor today for my pain meds. She is actually a Lyme

>Disease Doc. I may have told you that, but my memory is so bad, I have

>forgotton what it was like to have one. I took in a ton of info. to her.

>She had no way of escaping because I was paying for the office call. By

the

>time I got done, I actually think I got through to her. Before I left, she

>said " Thank-you for the teaching " . I think she really meant it. So, I

>guess we just have to be persistant with these doctors. Collect as much

>info as one can and go ready to let them know that they are not dealing

>with dummies.....Hugs to you

[Guest guest]

Hi Marta and all,

You mentioned in this post that you had been on Cefzil. My son had been on

that for ear infection, before being diagnosed with Lyme. The Inf.Disease

Specialist said that 3 of the 4 antibiotics he had been on for ear infection

would have somewhat treated lyme(except that they use much larger doses for

lyme). Cefzil is the one he said didn't treat lyme. He was on

Augmentin,Zithromax,Cefzil and Biaxin, in that order starting 11-27-98(for

ear infections). What seemed strange to me, (in regard to the info. on

herxes), is that early in Jan.99, he suddenly developed more symptoms(joint

pain,stiff neck,worse headache,etc.) this was after being on the Cefzil for

about 2 weeks. Also, he had been hot-tubbing frequently during this time. He

was then put on the Biaxin(again,for ear infection) a couple days later, and

the joint pain lessened after about 2-1/2 weeks.He had also developed some

other symptoms around this time: photobia,memory loss, confusion,etc. He also

had another 10 days of Augmentin, and then exactly 4 weeks after the 1st bout

in early Jan., the joint pain,stiff neck,worse headache,etc. started again.

At that time he was put on Doxycycline (200mg/day) for Lyme, and only had

slight symptoms during the following 4 week cycles. He's still on the Doxy.

I am wondering if this was a herx, or if the symptoms of lyme had progressed .

[Guest guest]

Hi,

You are right, Cefzil did nothing for my Lyme, no idea why my Lyme doctor

even suggested it. Sounds to me like your son is having regular 4 week

herxes, this is normal. The spirochetes reproduce in 4 week cycles, while

they are in the blood, the abx zaps them and the dying spirochetes cause the

herx.

Marta

>From: C13JK@...

>

What seemed strange to me, (in regard to the info. on

>herxes), is that early in Jan.99, he suddenly developed more symptoms(joint

>pain,stiff neck,worse headache,etc.) this was after being on the Cefzil for

>about 2 weeks. Also, he had been hot-tubbing frequently during this time.

He

>was then put on the Biaxin(again,for ear infection) a couple days later,

and

>the joint pain lessened after about 2-1/2 weeks.He had also developed some

>other symptoms around this time: photobia,memory loss, confusion,etc. He

also

>had another 10 days of Augmentin, and then exactly 4 weeks after the 1st

bout

>in early Jan., the joint pain,stiff neck,worse headache,etc. started again.

>At that time he was put on Doxycycline (200mg/day) for Lyme, and only had

>slight symptoms during the following 4 week cycles. He's still on the Doxy.

>I am wondering if this was a herx, or if the symptoms of lyme had

progressed .

[Guest guest]

Marta,

What are you taking for the heart pounding and why ? I told my Dr that I

was having this and he seemed mildly disinterested, told me it was caused by

increased stroke (?). I can sit still and feel my heart beating very

stongly, not rapid but pounding. What has your Dr told you about this ? My

Doc acted like nothing was out of the ordinary.

Jim