lyme disease vs. other explanation

[Guest guest]

Hello all,

It has been a long time for me to visit this group so i am not sure

if any of you remember me. I am compelled to tell my story to save

maybe one person from getting the wrong diagnosis. I was told I had

lyme disease by one doctor a couple of years ago. I didn't recall a

tick bite, nor a rash. Although we all know you don't have to recall

a rash or a bite. I was put on antibiotics. Rounds and rounds of

antibiotics. I never got better. I was treated by a couple of

different doctors including a lyme specialist. Still more time

elapsed, and never got better. Finally I was fed up and started

asking some really tough questions and got several other opinions.

Finally I have landed in the lap of a very good doctor, not of the

quack variety. I have been diagnosed with Vasulitis which is an

autoimmune disease. My body is making antibodies against my arteries

that provide blood to my liver and intestines. I have been deathly

ill but will be starting on the right treatment this week. I hope to

get into remission. My treatment will consist of chemotherapy drugs

and steroids. If it weren't for my current doctor and his efforts to

properly diagnose me with the proper diagnostic tests I would be dead.

Please if you are not comfortable with the diagnosis of lyme, keep

searching especially if you see only a little improvement. I had to

have specialized tests and blood work sent to Mayo in order to get

figured out. I also had to have an angiogram, colonoscopies, biopsies

and an ercp (dye injected into the liver). These tests are not

pleasant but are vital for a proper diagnosis. In addition, some

other diseases do cause false positive lyme tests. so please people

be careful, there are many doctors out there who will take advantage

to make money off the lyme diagnosis.

Terry in Georgia

[Guest guest]

Terry,

I am so glad you found the real problem and are now getting help! Lyme can

cause Vasulitis, so I can understand the confusion. I am glad that you took

control of your health, asked the tough questions and finally received the

help that you obviously needed! I wish you much happiness and health in

your future.

Robynn

-Owner

[ ] lyme disease vs. other explanation

> Hello all,

> It has been a long time for me to visit this group so i am not sure

> if any of you remember me. I am compelled to tell my story to save

> maybe one person from getting the wrong diagnosis. I was told I had

> lyme disease by one doctor a couple of years ago. I didn't recall a

> tick bite, nor a rash. Although we all know you don't have to recall

> a rash or a bite. I was put on antibiotics. Rounds and rounds of

> antibiotics. I never got better. I was treated by a couple of

> different doctors including a lyme specialist. Still more time

> elapsed, and never got better. Finally I was fed up and started

> asking some really tough questions and got several other opinions.

> Finally I have landed in the lap of a very good doctor, not of the

> quack variety. I have been diagnosed with Vasulitis which is an

> autoimmune disease. My body is making antibodies against my arteries

> that provide blood to my liver and intestines. I have been deathly

> ill but will be starting on the right treatment this week. I hope to

> get into remission. My treatment will consist of chemotherapy drugs

> and steroids. If it weren't for my current doctor and his efforts to

> properly diagnose me with the proper diagnostic tests I would be dead.

> Please if you are not comfortable with the diagnosis of lyme, keep

> searching especially if you see only a little improvement. I had to

> have specialized tests and blood work sent to Mayo in order to get

> figured out. I also had to have an angiogram, colonoscopies, biopsies

> and an ercp (dye injected into the liver). These tests are not

> pleasant but are vital for a proper diagnosis. In addition, some

> other diseases do cause false positive lyme tests. so please people

> be careful, there are many doctors out there who will take advantage

> to make money off the lyme diagnosis.

> Terry in Georgia

>

[Guest guest]

Terry,

Did they give you a blood test for Lyme when they diagnosed you?

Lyra

> Hello all,

> It has been a long time for me to visit this group so i am not sure

> if any of you remember me. I am compelled to tell my story to save

> maybe one person from getting the wrong diagnosis. I was told I

had

> lyme disease by one doctor a couple of years ago. I didn't recall a

> tick bite, nor a rash. Although we all know you don't have to

recall

> a rash or a bite. I was put on antibiotics. Rounds and rounds of

> antibiotics. I never got better. I was treated by a couple of

> different doctors including a lyme specialist. Still more time

> elapsed, and never got better. Finally I was fed up and started

> asking some really tough questions and got several other opinions.

> Finally I have landed in the lap of a very good doctor, not of the

> quack variety. I have been diagnosed with Vasulitis which is an

> autoimmune disease. My body is making antibodies against my

arteries

> that provide blood to my liver and intestines. I have been deathly

> ill but will be starting on the right treatment this week. I hope

to

> get into remission. My treatment will consist of chemotherapy

drugs

> and steroids. If it weren't for my current doctor and his efforts

to

> properly diagnose me with the proper diagnostic tests I would be

dead.

> Please if you are not comfortable with the diagnosis of lyme, keep

> searching especially if you see only a little improvement. I had

to

> have specialized tests and blood work sent to Mayo in order to get

> figured out. I also had to have an angiogram, colonoscopies,

biopsies

> and an ercp (dye injected into the liver). These tests are not

> pleasant but are vital for a proper diagnosis. In addition, some

> other diseases do cause false positive lyme tests. so please people

> be careful, there are many doctors out there who will take

advantage

> to make money off the lyme diagnosis.

> Terry in Georgia

[Guest guest]

In a message dated 7/22/01 11:33:07 PM, lms@... writes:

<< I was told I

had

> lyme disease by one doctor a couple of years ago. >>

Terry-

WAIT A MINUTE!!!!! What does the above statement mean?????

What test was done to determine that you had lyme??? Do you know? did you see

the results??

I hate to tell you but you have gone into the devil's pit itself, Mayo

clinic, whom are so anti-lyme they are responsible for destroying THOUSANDS

of lives due to NOT diagnosing lyme when it really is. You say you have

'vasculitis', in which many lymies have been misdiagnosed with this until

they find out the true cause....LYME!!!! What test was done to positively

identify this disease 100%??? You have been diagnosed with a rheumtoidal

disease now, how interesting. This is what the Mayo clinic passes off on

EVERY lymie that comes through their door.

The fact that you took antibiotics on and on.....were you ever tested for the

co-infections of babesia, ehrlichia, bartonella, HHV-6 and mycoplasma (ferme

ntan)?????

I will bet not. THAT IS WHY YOU NEVER GOT BETTER POSSIBLY. Also, what

protocol did you follow??

It (obviously) makes me mad when people whom are diagnosed with lyme, have a

partial treatment for lyme, are not cured (which we all know there is NO

cure), and then warn everybody else, " NO SUCH THING " . This is extremely

detrimental.

If you take your steroids, chemotherapy drugs and IF YOU DO have lyme, you

will end up a lot worse than you are now. It is your choice to do whatever

you feel comfortable with but I hope that you researched this THOROUGHLY so

that you can have a well-educated decision and not just go by what some drs.

told you. I am involved with an ALS/lyme group in which these 90 people were

told they had ALS, going to die, no doubt. ALL TESTED POSITIVE FOR LYME!!!

Also I am involved with MS/lyme people as well as lupus.

Like I said, it is your choice but if I were you, I would be very much

involved in the research and the final decision of what I had.

sue in nj

[Guest guest]

woof woof woof

my puppy does the same thing ;-)

[Guest guest]

Terry wrote:

>I have been diagnosed with Vasulitis which is an

> autoimmune disease. My body is making antibodies against my

arteries that provide blood to my liver and intestines. I have been

deathly ill but will be starting on the right treatment this week.

....

In addition, some other diseases do cause false positive lyme tests.

so please people be careful, there are many doctors out there who

will take advantage to make money off the lyme diagnosis. <

As many people are also suspecting, I would not be surprised

if there were connections between many of these diseases.

I had an " autoimmune disorder " and finally did get a positive

diagnosis, after the same doctor claimed it was a sort of false

positive ( " you had Lyme sometime in the past " was his statement).

I would think it's possible to have gotten a Lyme infection, then the

body persists with autoimmue disorders of various types.

I think the likelihood of false negatives for Lyme is a much greater

problem than the opposite, just from ancedotal experience of these

support groups. My doctor is treating me for Lyme, but explored other

possibilities and carefully tested for various other disorders.

I don't understand a statement about doctors making money off a Lyme

diagnosis! There's so little they can do for us. There's no magic

powder they can sell us. There's no profitable treatments.

I see a Lyme specialist. I've been three times, for a grand total of

$600. Not cheap for me, but not much compared to some specialties.

He's put me on a cheap oral antibiotic. He said to dispense as

written--no generic, but at $20/month, there can't be much a kick

back from the drug company there. I've had another $1,500 or so in

blood work done at labs of my choice. This doctor is not profiting

off me.

There are so few doctors treating Lyme, and often having to do so

outside the usual insurance company schemes. I can't imagine any of

them are profiting. Any other diagnosis might give them more dollars.

Many other specialties might lead to a new Jaguar--not Lyme.

--, up at 4:50 to walk the dog, grrr

[Guest guest]

terry what kind of doc helped you and how did you no

what test to ask for i go to my md and all they do is

blood work?

--- rivrfolk@... wrote:

> Hello all,

> It has been a long time for me to visit this group

> so i am not sure

> if any of you remember me. I am compelled to tell my

> story to save

> maybe one person from getting the wrong diagnosis.

> I was told I had

> lyme disease by one doctor a couple of years ago. I

> didn't recall a

> tick bite, nor a rash. Although we all know you

> don't have to recall

> a rash or a bite. I was put on antibiotics. Rounds

> and rounds of

> antibiotics. I never got better. I was treated by a

> couple of

> different doctors including a lyme specialist. Still

> more time

> elapsed, and never got better. Finally I was fed up

> and started

> asking some really tough questions and got several

> other opinions.

> Finally I have landed in the lap of a very good

> doctor, not of the

> quack variety. I have been diagnosed with Vasulitis

> which is an

> autoimmune disease. My body is making antibodies

> against my arteries

> that provide blood to my liver and intestines. I

> have been deathly

> ill but will be starting on the right treatment this

> week. I hope to

> get into remission. My treatment will consist of

> chemotherapy drugs

> and steroids. If it weren't for my current doctor

> and his efforts to

> properly diagnose me with the proper diagnostic

> tests I would be dead.

> Please if you are not comfortable with the diagnosis

> of lyme, keep

> searching especially if you see only a little

> improvement. I had to

> have specialized tests and blood work sent to Mayo

> in order to get

> figured out. I also had to have an angiogram,

> colonoscopies, biopsies

> and an ercp (dye injected into the liver). These

> tests are not

> pleasant but are vital for a proper diagnosis. In

> addition, some

> other diseases do cause false positive lyme tests.

> so please people

> be careful, there are many doctors out there who

> will take advantage

> to make money off the lyme diagnosis.

> Terry in Georgia

>

>

>

[Guest guest]

What were your Lyme symptoms?