Re: CONFUSED?????...........

January 13, 2006

Sadly, that is a common story So why, with all your symptoms, did he

assume the pos test was false and the neg test wasnt? Lyme is, first and

foremost, a clinical diagnosis. Go to lymenet.org and look up the symptom

list, then go from there.

being tired can cause a bunch of symptoms. But, it wont make your joints

ache, or give you mind fog, nor the headaches that we get. Stupid Dr.

Stupid STUPID Dr.

Took me some 3 dozen Drs and about 17 years to get diagnosed. My

symptoms were greatly varied however, but all it took was 1 Dr ( who is

known aound here as a quack) to actually listen to me.

Make up your own mind, then go from there! Best of luck,

[ ] CONFUSED?????...........

> OK, I went to an infectious disease Dr today. He said he doesnt believe

> that everyone who comes back with lyme as I did actually have it. He

> said my initial blood test was positive, but another blood test the

> same day was negative! So he says I do not have it, it was a false

> positive, even though I have all the symptoms, he said I just need more

> sleep, well I cant sleep cuz I am in so much pain! Is this normal for

> the test to come back like that? My friend also just came back with the

> exact same results, they want to put her on doxy then test agian in 4

> weeks, another test was never mentioned for me. I am confused, I dont

> want to seem like a hypochondriac...but SOMETHING is wrong with

> me...it's not just a lack of sleep. I am thinking I will try to find

> another Dr and get retested. I have read that this happens with Lyme,

> that is an imitator of other things....

>

> Support group for Oregon residents:

> Oregon_Lyme/

>

January 13, 2006

Of course you're confused!

You absolutely should find another doctor, one who is Lyme literate

(an LLMD). All LLMDs diagnose based on test results AND on clinical

assessment (meaning your physical symptoms). That's because even the

best Lyme tests aren't always reliable.

Jessie

>

> OK, I went to an infectious disease Dr today. He said he doesnt

believe

> that everyone who comes back with lyme as I did actually have it.

He

> said my initial blood test was positive, but another blood test

the

> same day was negative! So he says I do not have it, it was a false

> positive, even though I have all the symptoms, he said I just need

more

> sleep, well I cant sleep cuz I am in so much pain! Is this normal

for

> the test to come back like that? My friend also just came back

with the

> exact same results, they want to put her on doxy then test agian

in 4

> weeks, another test was never mentioned for me. I am confused, I

dont

> want to seem like a hypochondriac...but SOMETHING is wrong with

> me...it's not just a lack of sleep. I am thinking I will try to

find

> another Dr and get retested. I have read that this happens with

Lyme,

> that is an imitator of other things....

>

January 13, 2006

Hi Blue moon,

It is frustrating to think that you have just come from an ID doc

and that he has given you such a run around. The diagnosis of lyme

is a clinical diagnosis...the fact that you have a positive and a

negative should bring up red flags to him. But that is not the case,

I would hope that with all the controversy about lyme he would at

least err on the side of caution now that he should know how

devastating this disease is.

I am hopeful that you will seek out a LLMD that will do the

appropiate testing and diagnosis for you. And in the mean time do

not feel confused or frustrated. It will only serve to increase your

lyme load...Just run (don't walk) and find your self a more informed

doc.

Hang in there,

>

> OK, I went to an infectious disease Dr today. He said he doesnt

believe

> that everyone who comes back with lyme as I did actually have it.

He

> said my initial blood test was positive, but another blood test

the

> same day was negative! So he says I do not have it, it was a false

> positive, even though I have all the symptoms, he said I just need

more

> sleep, well I cant sleep cuz I am in so much pain! Is this normal

for

> the test to come back like that? My friend also just came back

with the

> exact same results, they want to put her on doxy then test agian

in 4

> weeks, another test was never mentioned for me. I am confused, I

dont

> want to seem like a hypochondriac...but SOMETHING is wrong with

> me...it's not just a lack of sleep. I am thinking I will try to

find

> another Dr and get retested. I have read that this happens with

Lyme,

> that is an imitator of other things....

>

January 13, 2006

Bluemoonharmony--

I have had negative test results also, but also have all the symptoms of Lyme,

plus I had a bite and rash.

What part of the country do you live in? Perhaps someone in the group can email

a doctor's name to you privately.

My appointment w/ the nurse practitioner of the LLMD is Thursday! Then I will

see the LLMD next month. I have been to two infectious disease docs. I think

they were both good doctors, but, as usual, they do not diagnose or treat Lyme

w/ the seriousness it needs. However, I do have to say that the second doctor

took it more seriously and wanted me on abx right away--but I am waiting for the

LLMD doc because she will test me for all the coinfections, etc. Am keeping my

fingers crossed that I will get there before worse happens.

Best of luck,

Margh

[ ] CONFUSED?????...........

OK, I went to an infectious disease Dr today. He said he doesnt believe

that everyone who comes back with lyme as I did actually have it. He

said my initial blood test was positive, but another blood test the

same day was negative! So he says I do not have it, it was a false

positive, even though I have all the symptoms, he said I just need more

sleep, well I cant sleep cuz I am in so much pain! Is this normal for

the test to come back like that? My friend also just came back with the

exact same results, they want to put her on doxy then test agian in 4

weeks, another test was never mentioned for me. I am confused, I dont

want to seem like a hypochondriac...but SOMETHING is wrong with

me...it's not just a lack of sleep. I am thinking I will try to find

another Dr and get retested. I have read that this happens with Lyme,

that is an imitator of other things....

January 13, 2006

I AM NOT AT ALL SURPRISED AT THE DRS RESPONSE. MY DR TOLD ME THE SAME

THING. I ENDED UP REAL SICK AND NOW FOUR YEARS LATER I AM BATTLING

LYME AND SEVERAL OF THE CO-INFECTIONS THAT CAN COME WITH IT.YOU DO

NEED TO FIND A GOOD LYME LITERATE DR RIGHT AWAY. IT SOUNDS TO ME LIKE

YOU DO HAVE IT AND YOU NEED TO GET ON ANTIBIOTICS RIGHT AWAY. CAN YOU

FIND A LOCAL LYME SUPPORT GROUP IN YOUR AREA AND GET A NAME OF A DR?

WHAT STATE AREA DO YOU LIVE IN, MAYBE WE CAN HELP YOU FIND ONE.