Re: No symptoms...seeking Lyme dx?????

[Guest guest]

Hi Pepi,

I just find that a bit far-fetched, no offense to your sister, the RN,

it sounds like something her doctor is spouting and she is repeating. I

just cannot imagine " alot " of people going to the doctors with no symptoms.

There must be something wrong with them, that leads them to suspect they

have LD. True, maybe they don't ALL have it, but they are asking to be

tested for it, I don't think that's a bad thing. But don't forget....the

tests are unreliable, if they come back negative, as they are likely to do,

does that mean they are fakers and they don't have it??? Lyme is and will

always be a clinical dx until a reliable test is found. Is your sister's

doctor finding no Lyme through tests, and then sending them on their merry

way??? Many of us here in the east where LD is rampant have met with the

same type unbelieving doctors scores of times before we were able to get

treatment. Some of us believed the doctors and did not get treatment until

years later when it was too late. Pepi, I hope you can question your sister

in more detail about these patients. I would really like to know what kind

of symptoms they are presenting with, before I can believe that there is

mass hysteria causing people to run to the doctors asking about LD. It just

seems to me that this is the stuff that Sigal and Steere write about and

doctors eat up because that means less work for them.

Hugs,

Marta

> From: " Rodney A .Metzler " <rod@...>

>

> Hi Ya'll, maybe here is a possible answer to our dillemna, ok maybe not

> answer but a reason. My Sis is an RN and works for a group of Drs that

> 'treat lyme' and are literate but are not LLMD's (make sense?) Anyway she

> said that they are seeing alot of people who " think " they have LD but show

no

> symptoms. It seems that up north LD is the Disease of the month, everyone

> thinks they have it, i am not saying that it isnt rampant, BUT, if there

are

> alot of people out there who are flooding Drs with LD and do not have it,

WE

> will get a bad rap. They will just drown out our concerns. Just my little

> .02 cents worth. Pepi

>

[Guest guest]

This just floors me! Wondering if I know the group of Doc's...sounds all too

familiar!

My insurance company referred me to this group of Infectious Disease Dr's who

" treat " Lyme.....Long story short....I saw the Dr. He asked me if " all the

Yuppies these days want Lyme disease or something because we are all coming

in claiming to have it. " He then asked if I thought it was a " prestigious

disease " . Let me also remind you at this time I had a POSITIVE elisa,

POSITIVE western blot by CDC criteria, hx of working in the veterinary field

for 12 years, live in CT, and symptoms consistent with late stage Lyme

Disease. He then said " Well, yeah, your tests are positive, but, they are so

unreliable we can't go by that. And your symptoms sound like MS or

Lupus....sorry, I don't think you have Lyme. "

Well, 8 months later I finally received treatment and am now on IV and my

life has been destroyed.

The kicker.....I am meeting more and more people this insurance company has

sent to him as thier " Lyme guy " - they all tell the same story.

Go figure.

So, I highly doubt that everyone comes in without symptoms and is just

convinced they have lyme.....after all, they probably even said that about me!

[Guest guest]

I thought I would pass that info on to Ya'll and get your reactions, yes

they are the same ones I had and this is all making my Sister really REALLY

wonder about it all. Pepi

> This just floors me! Wondering if I know the group of Doc's...sounds all

too

> familiar!

> My insurance company referred me to this group of Infectious Disease Dr's

who

> " treat " Lyme.....Long story short....I saw the Dr. He asked me if " all

the

> Yuppies these days want Lyme disease or something because we are all

coming

> in claiming to have it. " He then asked if I thought it was a " prestigious

> disease " . Let me also remind you at this time I had a POSITIVE elisa,

> POSITIVE western blot by CDC criteria, hx of working in the veterinary

field

> for 12 years, live in CT, and symptoms consistent with late stage Lyme

> Disease. He then said " Well, yeah, your tests are positive, but, they are

so

> unreliable we can't go by that. And your symptoms sound like MS or

> Lupus....sorry, I don't think you have Lyme. "

>

> Well, 8 months later I finally received treatment and am now on IV and my

> life has been destroyed.

>

> The kicker.....I am meeting more and more people this insurance company

has

> sent to him as thier " Lyme guy " - they all tell the same story.

>

> Go figure.

>

> So, I highly doubt that everyone comes in without symptoms and is just

> convinced they have lyme.....after all, they probably even said that about

me!

>

>

>

[Guest guest]

I wish we could read a note and actually read what it says and not read

between the lines or read something else into it! What if Drs were flooded

with people who had a mole/freckle and swore it was cancer but was just a

mole/freckle?! I KNOW LD is rampant, I know that alot more people everyday

are getting it, but there are alot of people out there who are crying wolf

when its just a little Chihuahua. So please read what is written and not

what you want to see, K? Thanks! :-) Pepi

[Guest guest]

Dear Pepi,

Where, if I may ask, is this happening " up north? "

We're in Chicago area & hardly anyone is aware of lyme - other than the folks

who have it.

Everyone we meet is sure getting an education! VBG!

[Guest guest]

Hi Bea-

Thank you for your response. Yes, I was in touch with the Attorney Generals

office regarding this matter. Seems there is a " trend " going on- and my

story is just one of many with this particular insurance company. In CT,

treatment cannot be denied once it is ordered by a Board Certified Doctor-

so, now, even with all the clinical symptoms and positive tests it is

difficult to get a diagnosis- this is how it is working now. I am not sure

if it is like this with all insurance companies. I can only speak for mine-

and again, I have met many others who tell the same story.

I am willing to do whatever I can by telling my story. I am hoping to pursue

this much further but my health has been so bad- I hope to get better, regain

my strength, and do what I can to make sure this nonsense stops.

A further note.....when I needed to find a Neurologist I called almost every

Dr in the insurance booklet. As soon as they found out I had Lyme- they told

me " we don't see Lyme patients anymore, sorry " . What a twist huh? I finally

found one who has been a godsend to me but it was quite an experience.

Thank you for your input and support.

[Guest guest]

Jules,

Yours is a remarkable story, to have ALL of the supporting diagnosis ducks in a

row . It would seem beneficial to

use this data somehow in encouraging those particular physicians and that

insurance company to reconsider its

position in this matter. Would treatment 8 months earlier have altered the

course? Hard to say. Would it have led to

less expense? Hard to say. But I suspect the answer to both questions is yes. I

hope you recover completely and can

take this distressing tale on the road. It seems to me that Attorney General

Blumenthal would find this particular

story interesting, as might Senator Dodd. I know I am an infrequent commentor,

but this was compelling. Best to you

and all on this group.

Bea

Jules06032@... wrote:

> From: Jules06032@...

>

> This just floors me! Wondering if I know the group of Doc's...sounds all too

> familiar!

> My insurance company referred me to this group of Infectious Disease Dr's who

> " treat " Lyme.....Long story short....I saw the Dr. He asked me if " all the

> Yuppies these days want Lyme disease or something because we are all coming

> in claiming to have it. " He then asked if I thought it was a " prestigious

> disease " . Let me also remind you at this time I had a POSITIVE elisa,

> POSITIVE western blot by CDC criteria, hx of working in the veterinary field

> for 12 years, live in CT, and symptoms consistent with late stage Lyme

> Disease. He then said " Well, yeah, your tests are positive, but, they are so

> unreliable we can't go by that. And your symptoms sound like MS or

> Lupus....sorry, I don't think you have Lyme. "

>

> Well, 8 months later I finally received treatment and am now on IV and my

> life has been destroyed.

>

> The kicker.....I am meeting more and more people this insurance company has

> sent to him as thier " Lyme guy " - they all tell the same story.

>

> Go figure.

>

> So, I highly doubt that everyone comes in without symptoms and is just

> convinced they have lyme.....after all, they probably even said that about me!

>

>

>

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