Re: Questioning my Lyme diagnosis... Doc says I have it BUT I only have 2 bands. ???

[Guest guest]

well...even my llmd says " not everything is lyme " . just a suggestion my

girlfriend was diagnoses with the enterovirus which i guess stemmed off of

her having epstein bar virus years ago. my suggestion would be to plug away

and find other doctors/specialists who will dig deeper. OR you could try a

couple of months of antibiotics and see if they help, wouldn't hurt, just

keep up on the probiotics. also, if you haven't changed your diet, do it. no

sugar, caffiene and start drinking AT LEAST one fresh organic veggie juice a

day. best wishes

On Fri, Apr 8, 2011 at 10:12 AM, <melrenem0r@...> wrote:

>

>

> 12 years ago, when I was 22, I came down with Mono. I have been plagued by

> debilitating fatigue ever since. For the first 5 years or so, I also

> suffered from constant body aches (on top of the fatigue) and was told I had

> chronic fatigue and fibromyalgia.

>

> The body aches slowly went away (thank God) BUT the fatigue has gotten

> WORSE. So much worse that I can't even work anymore (I used to be a school

> teacher). The fatigue is ruining my life!

>

> My EBV titers have always been off the charts high and my " chronic fatigue "

> doctor has always said I have chronic mono. Last fall, I had her test me for

> Lyme and only band 23 came back positive. She now says I have Lyme based on

> the single positive band. I questioned this diagnoses and had her run 2 or 3

> more tests and this one band, 23, keeps coming back positive, but nothing

> else. I also have a really low CD57, around 30.

>

> Last month, I sent my blood off to Igenix and had them test for Lyme again

> PLUS all of the co-infections.

>

> They ALL came back negative except for THE usual positive band 23 PLUS band

> 41 was indeterminate. Based on Igenix I am NEGATIVE for Lyme.

>

> SOOOOO..... I am confused! Is Lyme causing this debilitating fatigue or

> something else???? Could it just simple be chronic mono since my titers are

> always high?

>

> Is it even possible for Lyme to cause ONLY fatigue WITHOUT ANY others

> symptoms?

>

> I just want to know whats wrong with me so I can fight whatever it is and

> get my life back! I want SO tired of being too tired to participate in life

> and have SO much I want to do bit can't because I am too tired! Can't stand

> living like this much longer!

>

> Thanks for anyone's insight!

>

>

>

>

>

[Guest guest]

I agree, not everything is Lyme, and it is worth getting a second (or third)

opinion. The Columbia University Medical School's Lyme Disease Center has a

second opinion service where they put you through a battery of tests and

help figure out if what you have is Lyme. I believe their reputation is

very good, but it is pricey if insurance won't cover, I hear.

Good luck.

On Fri, Apr 8, 2011 at 10:13 PM, le Handy <kndplus2@...> wrote:

> well...even my llmd says " not everything is lyme " . just a suggestion my

> girlfriend was diagnoses with the enterovirus which i guess stemmed off of

> her having epstein bar virus years ago. my suggestion would be to plug away

> and find other doctors/specialists who will dig deeper. OR you could try a

> couple of months of antibiotics and see if they help, wouldn't hurt, just

> keep up on the probiotics. also, if you haven't changed your diet, do it.

> no

> sugar, caffiene and start drinking AT LEAST one fresh organic veggie juice

> a

> day. best wishes

>

> On Fri, Apr 8, 2011 at 10:12 AM, <melrenem0r@...> wrote:

>

> >

> >

> > 12 years ago, when I was 22, I came down with Mono. I have been plagued

> by

> > debilitating fatigue ever since. For the first 5 years or so, I also

> > suffered from constant body aches (on top of the fatigue) and was told I

> had

> > chronic fatigue and fibromyalgia.

> >

> > The body aches slowly went away (thank God) BUT the fatigue has gotten

> > WORSE. So much worse that I can't even work anymore (I used to be a

> school

> > teacher). The fatigue is ruining my life!

> >

> > My EBV titers have always been off the charts high and my " chronic

> fatigue "

> > doctor has always said I have chronic mono. Last fall, I had her test me

> for

> > Lyme and only band 23 came back positive. She now says I have Lyme based

> on

> > the single positive band. I questioned this diagnoses and had her run 2

> or 3

> > more tests and this one band, 23, keeps coming back positive, but nothing

> > else. I also have a really low CD57, around 30.

> >

> > Last month, I sent my blood off to Igenix and had them test for Lyme

> again

> > PLUS all of the co-infections.

> >

> > They ALL came back negative except for THE usual positive band 23 PLUS

> band

> > 41 was indeterminate. Based on Igenix I am NEGATIVE for Lyme.

> >

> > SOOOOO..... I am confused! Is Lyme causing this debilitating fatigue or

> > something else???? Could it just simple be chronic mono since my titers

> are

> > always high?

> >

> > Is it even possible for Lyme to cause ONLY fatigue WITHOUT ANY others

> > symptoms?

> >

> > I just want to know whats wrong with me so I can fight whatever it is and

> > get my life back! I want SO tired of being too tired to participate in

> life

> > and have SO much I want to do bit can't because I am too tired! Can't

> stand

> > living like this much longer!

> >

> > Thanks for anyone's insight!

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

To rule out lyme u need to get Rx for doxy and see if you get worse or better.

If you get either it answers your question of lyme or not.

SarAH

[ ] Questioning my Lyme diagnosis... Doc says I have it BUT I

only have 2 bands. ???

12 years ago, when I was 22, I came down with Mono. I have been plagued by

debilitating fatigue ever since. For the first 5 years or so, I also suffered

from constant body aches (on top of the fatigue) and was told I had chronic

fatigue and fibromyalgia.

The body aches slowly went away (thank God) BUT the fatigue has gotten WORSE.

So much worse that I can't even work anymore (I used to be a school teacher).

The fatigue is ruining my life!

My EBV titers have always been off the charts high and my " chronic fatigue "

doctor has always said I have chronic mono. Last fall, I had her test me for

Lyme and only band 23 came back positive. She now says I have Lyme based on the

single positive band. I questioned this diagnoses and had her run 2 or 3 more

tests and this one band, 23, keeps coming back positive, but nothing else. I

also have a really low CD57, around 30.

Last month, I sent my blood off to Igenix and had them test for Lyme again

PLUS all of the co-infections.

They ALL came back negative except for THE usual positive band 23 PLUS band 41

was indeterminate. Based on Igenix I am NEGATIVE for Lyme.

SOOOOO..... I am confused! Is Lyme causing this debilitating fatigue or

something else???? Could it just simple be chronic mono since my titers are

always high?

Is it even possible for Lyme to cause ONLY fatigue WITHOUT ANY others

symptoms?

I just want to know whats wrong with me so I can fight whatever it is and get

my life back! I want SO tired of being too tired to participate in life and have

SO much I want to do bit can't because I am too tired! Can't stand living like

this much longer!

Thanks for anyone's insight!