lyme tests

[Guest guest]

Just wanted to add that although I tested borderline

negative three times for Lyme disease - antibodies

were present but supposedly not in high enough

guantities to treat - a bulls eye rash showed up

recently, so my doctor decided to treat empirically.

I'm doing 300mg of Doxycycline per day for 8 weeks.

My symptoms have improved although I do still have

pain, just less in the joints.

Jennie

--- JR1398@... wrote:

>

> > A while ago, there were several posts to this list

> saying that high

> > percentages of people with CFS test positive on

> the LUAT test for

> > Lyme Disease.

> >

> > I just saw a post (on a Lyme list) in which the

> author says, re Lou

> > Gehrig's Disease, " Now I am finding that virtually

> all ALS patients

> > will test positive for Lyme. " (The author doesn't

> mention whether

> > this is on the LUAT test or other Lyme tests.)

> >

> > I was told by someone at Igenex (which does the

> LUAT) that a yeast

> > infection can cause a false positive on the LUAT.

> So can a bladder

> > infection, but automatic screening is done to rule

> out bladder

> > infections. I don't think automatic screening is

> done to rule out

> > yeast infections, however.

> >

> > Some believe CFS = Lyme Disease. Others think CFS

> may involve an

> > infectious agent or autoimmune problem that

> somehow cross-reacts with

> > the LUAT test, causing false positives for PWCs.

> Or maybe

> > undiagnosed yeast problems are causing

> false-positive LUATs?

> >

> > Can anyone give further info or speculations? Any

> updates? Is this

> > being looked into further? Seems like it might be

> an important clue.

> >

> > Thanks.

> >

> > Liz

>

> Liz,

> When I suffered severe tendinitis and a torn

> ligament while on doxy a very nice doctor took the

> time to email me directly a number of times. She

> treats Lyme disease specifically but CFIDS as well.

> She feels that CFIDS is ALWAYS Lyme disease. I had

> to disagree with her in my case at least. I don't

> think Lyme causes the dangerous respiratory and

> chronic sinus infections that I've had all of these

> years. But chlamydia pneumonia, which I have does

> cause all of these problems. Also, I've never had

> any rash as described with Lyme. I think the

> pathogen that causes Lyme should probably be

> included with the list of pathogens that can cause

> CFIDS. But I doubt that we all have it. And I do

> think its possible that one of the many weird things

> going on in our bodies could sometimes give a false

> positive on the test. Judy R.

>

>

__________________________________________________

[Guest guest]

Oh dear, I understand exactly how your daughter feels. I was 41 years old, a

junior in college studying to be an industrial engineer, with a great paying

job. When suddenly I couldn't do simple math! Lost my ability to work, my

scholarships and dignity before finally getting diagnosed.

Lyme is a clinical diagnosis!!! Sometimes tests come back negative for

various reasons! I've had 2 negative blood tests and one positive with 7

bands! But my MD doesn't rely on them. He knows they are not always

accurate.

Are you sure her MD is a LLMD?? Many claim to be experts about lyme, when

in fact they are NOT!

Please e-mail me off board. I'm dying to know who her LLMD is, if you don't

mind telling me. Getting the right MD is half the battle!!!

Best wishes,

Carol

[Guest guest]

Jane,

Darn, did it again!! I always forget to include my e-mail address when I ask

someone to contact me off board.. LOL LYME BRAIN!

carolkerr@...

Thanks bunches,

Carol

[Guest guest]

Jane,

Surely a true herx is a better " test " than any other available

diagnostic test. If she is truely having die-off from abx then she

has a bacterial infection. Of course there are other bacterial

infections besides lyme, but if I had the symptoms of lyme and herx

from abx then I would make sure I found a doctor that diagnosed me

and treated me for specifially for lyme first. The alternative is to

let a bacterial infection keep festering. Obviously that hasn't

worked for the past 5 years.

Kell

> My daugher called me yesterday in tears. She is such a great deal

of

> pain and misery. She has taken a leave of absence from work, is

> trying to go to law school and is a newly wed. I know you all

> understand. To add to her misery, she called her LLD in Pa. and

after

> six weeks of waiting, found out her test results came back

negative.

> We were so hopeful we would at last have a definite diagnosis but

now

> are once again discouraged. Should we accept the fact the doesn't

> have Lymes, despite the Herxing reaction, or should we insist on

more

> testing? She has been on oral abx for the last three weeks. She

goes

> back to her LLD next week. She has been ill with the majority of

> symptoms of Lymes for about the last 5 years.

>

> She has signed up for this list but has not gotten her confirmation

> yet. I feel it will be very beneficial for her to hear what you all

> have to say. You should be hearing from her soon.

>

> Thanks once again,

> Jane

[Guest guest]

Hi, I'm the daughter with Lyme, " Kerrie! "

It makes me feel better that Kell agrees that Herxing is certainly a

reliable test. My husband and I have been talking and I think my

negative test was most likely just my blood test. Since it took 6

weeks to get back, I doubt they have the urine test back yet that

was just sent 2 weeks ago. Is Igenex somewhat slow about results?

Anyone know? The urine tests were taken (by me, yuk) three, five and

seven days after I started antibiotics. I was Herxing pretty good by

then. It started just the next day after I started my antibiotics.

And it hasn't let up . . . .

If someone could just tell me I'm normal, it would help me so much.

I am on 500mg of Biaxin twice a day. From some reading I've done, I

guess that's a pretty serious load?? For an oral antibiotic that is?

I toy with the idea of cutting back since I have been so ungodly

sick, but then I figure it must be working, so might as well hit it

head on. I'm just getting really panicky because school starts back

up for me on Monday and I don't know how in the world I am going to

do it. Let alone the job I haven't been to in a month.

The first two weeks I was so ill. I have a page full of symptoms but

I'm sure everyone knows what they are through personal experience.

Monday and Tuesday of this week were getting better, I even

marked " fair " on my calendar. But, yesterday and today I took a

major plunge right back to where I was. And I just recently read

something that talked about the buggies (that's what I call them, it

helps me deal) having a four week cycle and that the fourth week is

often the worst??

I have law school in just a few days, a wedding to be in in Canada

in another few weeks and horse shows to go to! I am dreaming? Is

this going to take longer than I think??

I've been so depressed, I am about at the end of my rope. Everyone

keeps telling me to take it one day at a time, and that's

fine . . . But, I need to be prepared and know the " what ifs. " I've

just got so much life just out of my reach waiting for me and it's

just killing me. I want me life back!!

Am I normal? Can you all relate?

Kerrie

[Guest guest]

You may have to give up some of your activities. Have you thought about doing

hyperbarics or Rife? Rita

[ ] Re: Lyme Tests

Hi, I'm the daughter with Lyme, " Kerrie! "

It makes me feel better that Kell agrees that Herxing is certainly a

reliable test. My husband and I have been talking and I think my

negative test was most likely just my blood test. Since it took 6

weeks to get back, I doubt they have the urine test back yet that

was just sent 2 weeks ago. Is Igenex somewhat slow about results?

Anyone know? The urine tests were taken (by me, yuk) three, five and

seven days after I started antibiotics. I was Herxing pretty good by

then. It started just the next day after I started my antibiotics.

And it hasn't let up . . . .

If someone could just tell me I'm normal, it would help me so much.

I am on 500mg of Biaxin twice a day. From some reading I've done, I

guess that's a pretty serious load?? For an oral antibiotic that is?

I toy with the idea of cutting back since I have been so ungodly

sick, but then I figure it must be working, so might as well hit it

head on. I'm just getting really panicky because school starts back

up for me on Monday and I don't know how in the world I am going to

do it. Let alone the job I haven't been to in a month.

The first two weeks I was so ill. I have a page full of symptoms but

I'm sure everyone knows what they are through personal experience.

Monday and Tuesday of this week were getting better, I even

marked " fair " on my calendar. But, yesterday and today I took a

major plunge right back to where I was. And I just recently read

something that talked about the buggies (that's what I call them, it

helps me deal) having a four week cycle and that the fourth week is

often the worst??

I have law school in just a few days, a wedding to be in in Canada

in another few weeks and horse shows to go to! I am dreaming? Is

this going to take longer than I think??

I've been so depressed, I am about at the end of my rope. Everyone

keeps telling me to take it one day at a time, and that's

fine . . . But, I need to be prepared and know the " what ifs. " I've

just got so much life just out of my reach waiting for me and it's

just killing me. I want me life back!!

Am I normal? Can you all relate?

Kerrie

[Guest guest]

Carol Kerr

-- [ ] Re: Lyme Tests

Hi, I'm the daughter with Lyme, " Kerrie! "

Hi Kerrie!! Nice to know you!!

It makes me feel better that Kell agrees that Herxing is certainly a

reliable test. My husband and I have been talking and I think my

negative test was most likely just my blood test.

If your MD gave you a lyme titer test, it was worthless anyway!! The sheet

I faxed your mom about understanding western blots will help you to

understand all about the WB blood test adn why it may come back negative.

And like I said, some people never get a positive test for one reason or

another, but the RESPOND to treatment and that's all that matters in my

book!!

Since it took 6 weeks to get back, I doubt they have the urine test back yet

that was just sent 2 weeks ago. Is Igenex somewhat slow about results?

NOPE, lyme and tick born disease bacteria is very slow growing, thankfully

or we'd be dead by now!! That's one reason the medical field has overlooked

the disease for so long. It doesn't act like normal bacterial infections!

It's a virus technically, but dies from antibiotics like a bacteria.. get

what I mean?? Since it grows so slow, it takes time to get the results

back!

Anyone know? The urine tests were taken (by me, yuk) three, five and seven

days after I started antibiotics. I was Herxing pretty good by then. It

started just the next day after I started my antibiotics.

And it hasn't let up . . . .

Drink plenty of water!! Also, the sheet I sent your mom on herxing... My

LLMD feels there is no glory to be gained by trying to handle going through

herxes on abx. He suggests you stop the abx for a day or two and give your

body, esp. liver a chance to rest.

This has been most beneficial for me and many others. The one time I tried

to live through the herx, I got much worse and it set me way back! So beware

of the herxes. If they feel intense, you can stop the abx for a couple of

days and save yourself misery and not adversely affect your treatment.

If someone could just tell me I'm normal, it would help me so much.

Oh honey, you are so the normal lymie!! Don't fret. Hop on line to lymenet

and read the abundance of stories posted there!! Mine is there too. Search

for " My Story " posted by " pleezwakemeup " , that's my old handle, now I'm

dizz " .... much easier to log on!! LOL As you read them, you will feel like

you wrote them, they'll be so much like you!!! What's going on in this

country with regard to this disease is CRAZY!!!

I am on 500mg of Biaxin twice a day. From some reading I've done, I

guess that's a pretty serious load?? For an oral antibiotic that is? I toy

with the idea of cutting back since I have been so ungodly sick,

Your instinct to cut back, is correct... and you are right! You are on a

good heavy dose! Good for your doctor!! I've already told you, I'd stop

them for 2-3 days and give your body a rest. When you herx it's your bodies

reaction to being OVER TAXED with dead lyme ketes. Drink plenty of fluids to

flush and stop killing the boogers for a few days will make you feel MUCH

BETTER!!

but then I figure it must be working, so might as well hit it head on. I'm

just getting really panicky because school starts back up for me on Monday

and I don't know how in the world I am going to do it. Let alone the job I

haven't been to in a month.

Honey, I hate to say this to you, but from my experience, and I already

posted, I was a junior in college when I started treatment. That first bad

herx that I didn't stop the abx did my memory in. I've still not got enough

back to remember my trade or school studies. STRESS allows the lyme to TAKE

OVER!!!

If you wanna be able to work (which I'm seriously doubting you will be able

to for a while) don't even consider school. The fatigue that sets in from

the treatment/herxing keeps me in bed about 18 hrs. per day. I'm 42, and

feel 80.

I've been in treatment..a litte over 3 mos.My app for SSI disability is in

process. You may want to file if you find you can't work, so you can use

the Medicare Disability insurance down the road. I'm not sure how long you

been sick and all people are different... maybe you won't get as ill as me..

I was bitten in 1974, never diagnosed till this year.

If I hadn't of had a serious post surgical infection in 1997, I'd have never

entered college or got my job at Ford Mo Co. After 11 wks of IV abx and

about 10 wks oral, it was like somebody turned on the lights in my head!!!

HELLO! I enrolled in college got a job... Became a diemaker and was a

junior on my way to an industrial engineering degree!! Top 10% of my class..

then I just started losing it!! Falls, and illnesses... next thing I know,

I can't do simple math and I'm bouncing checks all over the place!! (by

accident!!!! of course! LOL) Most embarrassing.

Indiana MD's didn't diagnosed me with FIBRO, LUPUS and possible MS, and said

I COULD NOT HAVE AN ACTIVE LYME INFECTION AFTER ALL THESE YEARS!! LIES!!!

IGNORANCE!!! UGH!!! Tick me off!!! The folks on lymenet picked up my story

and cry for help on line, like I did yours and pulled me in... the gal was

from TX... great lady! They showed me the way, and I'm on my way to

getting better today! You'll get there too kid... just hang in there.

Just remember, most people, including myself, will tell you, you get MUCH

WORSE before you get better when treating lyme. I'd seriously consider

taking a break from college.. just because of the stress issue alone... not

to mention your GPA... I was nearly a 4.0, and was stubborn and tried TWO

more semesters before I gave up... My GPA was 2.8 when I left and I've

dropped 5 of 8 classes over the last 2 semesters. Despite an offer for a

$3000 scholarship again this fall, I had to put off college again this

semester...just can't do it! Too confused, and short term memory is shot.

Now, if you don't have the lyme in your brain like me, maybe it isn't so bad

and you could try, but I'm telling you, if you get stressed you WILL get

worse.

The first two weeks I was so ill. I have a page full of symptoms but I'm

sure everyone knows what they are through personal experience.

Monday and Tuesday of this week were getting better, I even

marked " fair " on my calendar. But, yesterday and today I took a

major plunge right back to where I was. And I just recently read

something that talked about the buggies (that's what I call them, it helps

me deal) having a four week cycle and that the fourth week is often the

worst??

Most people herx in cycles.. doesn't have to be 4 wks... I usually herx

every 10 days. How often is usually individual depending on various factors.

I have law school in just a few days, a wedding to be in in Canada

in another few weeks and horse shows to go to! I am dreaming? Is

this going to take longer than I think??

Oh yes, depending on how long you have had it. If you've had it a while, it

could seriously be years. And you wanna be sure you took care of it, as it

can be passed mother to child.

I've been so depressed, I am about at the end of my rope. Everyone

keeps telling me to take it one day at a time, and that's

fine . . . But, I need to be prepared and know the " what ifs. " I've just

got so much life just out of my reach waiting for me and it's just killing

me. I want me life back!!

Am I normal? Can you all relate?

My heart just breaks for you... as the reality of your situation sinks in

over the next couple of days, esp. after reading the documentation I sent

your mom... you are going to be so MAD and HURT and DEPRESSED!! I know how

you feel. I want my life back so bad I just cry and cry sometimes...

But we gotta, get up, wipe our eyes, and be strong advocates to help

ourselves and others!!! Just like I'm helping you, please reach out to

others. If we don't tell the world, they won't know and the needless

suffering will never end. We are our children's hope!!

Keep your chin up cookie, and know I'm here for you any time, night or day.

(219)345-5671.

Your new Lymie friend,

Carol Kerr a/k/a " dizz "

[Guest guest]

Carol-

I can't BELIEVE you've had the disease for almost 30 thirties years without

diagnosis. That's just frickin' unbelieveable. I just hope and pray that the

good days begin to far out-weigh the bad ones. You know, the good days- when you

actually get out of bed, shower, wash and comb your hair, brush your teeth, get

dressed, actually walk out to get the mail, maybe go through a drivethrough at

the bank....Folks you have not 'walked a mile in Lymie shoes' have NO clue -

unfortunately, so I feel that so DON'T 95% of the doc's.

I finally got the copy of my labs from the biospy on my gall bladder - Medical

Diagnoistic Labs in NJ (Dr. Z uses them exclusively - In the times I've dealt

when them over the past few months, they are VERY helpful in addition to being

VERY thorough). The performed:

DNA by Qualtitative PCR for Lyme disease (B. Burgdorferi). Abnormal result:

Positive

Blood taken 10 days later showed

SGOT, SGPT

AST - 56 H (acceptable range 2-35)

ALT 66 H (acceptable range 2-40)

Does anyone know what the heck that means? Does anyone have a link to a

good website that explains what all these acronyms and lab results (routine as

far as the detailed stuff) mean? I've tried WebMD and Discovery Health - they

don't get into the detail I need.

My doc and the PRN all always impatient with me when I want talk at length about

my lab results in terms I can understand, especially those that are 'out of

tolerance.; I used to have an IQ of 155, so I don't think I'm incapable of

understanding what these labs mean. Of course, the neurological processing

center is seriously impaired, but I think they're really brushing me ( &

pissing!) me off.

Any input is helpful.

Sheryl

[ ] Re: Lyme Tests

Hi, I'm the daughter with Lyme, " Kerrie! "

Hi Kerrie!! Nice to know you!!

It makes me feel better that Kell agrees that Herxing is certainly a

reliable test. My husband and I have been talking and I think my

negative test was most likely just my blood test.

If your MD gave you a lyme titer test, it was worthless anyway!! The sheet

I faxed your mom about understanding western blots will help you to

understand all about the WB blood test adn why it may come back negative.

And like I said, some people never get a positive test for one reason or

another, but the RESPOND to treatment and that's all that matters in my

book!!

Since it took 6 weeks to get back, I doubt they have the urine test back yet

that was just sent 2 weeks ago. Is Igenex somewhat slow about results?

NOPE, lyme and tick born disease bacteria is very slow growing, thankfully

or we'd be dead by now!! That's one reason the medical field has overlooked

the disease for so long. It doesn't act like normal bacterial infections!

It's a virus technically, but dies from antibiotics like a bacteria.. get

what I mean?? Since it grows so slow, it takes time to get the results

back!

Anyone know? The urine tests were taken (by me, yuk) three, five and seven

days after I started antibiotics. I was Herxing pretty good by then. It

started just the next day after I started my antibiotics.

And it hasn't let up . . . .

Drink plenty of water!! Also, the sheet I sent your mom on herxing... My

LLMD feels there is no glory to be gained by trying to handle going through

herxes on abx. He suggests you stop the abx for a day or two and give your

body, esp. liver a chance to rest.

This has been most beneficial for me and many others. The one time I tried

to live through the herx, I got much worse and it set me way back! So beware

of the herxes. If they feel intense, you can stop the abx for a couple of

days and save yourself misery and not adversely affect your treatment.

If someone could just tell me I'm normal, it would help me so much.

Oh honey, you are so the normal lymie!! Don't fret. Hop on line to lymenet

and read the abundance of stories posted there!! Mine is there too. Search

for " My Story " posted by " pleezwakemeup " , that's my old handle, now I'm

dizz " .... much easier to log on!! LOL As you read them, you will feel like

you wrote them, they'll be so much like you!!! What's going on in this

country with regard to this disease is CRAZY!!!

I am on 500mg of Biaxin twice a day. From some reading I've done, I

guess that's a pretty serious load?? For an oral antibiotic that is? I toy

with the idea of cutting back since I have been so ungodly sick,

Your instinct to cut back, is correct... and you are right! You are on a

good heavy dose! Good for your doctor!! I've already told you, I'd stop

them for 2-3 days and give your body a rest. When you herx it's your bodies

reaction to being OVER TAXED with dead lyme ketes. Drink plenty of fluids to

flush and stop killing the boogers for a few days will make you feel MUCH

BETTER!!

but then I figure it must be working, so might as well hit it head on. I'm

just getting really panicky because school starts back up for me on Monday

and I don't know how in the world I am going to do it. Let alone the job I

haven't been to in a month.

Honey, I hate to say this to you, but from my experience, and I already

posted, I was a junior in college when I started treatment. That first bad

herx that I didn't stop the abx did my memory in. I've still not got enough

back to remember my trade or school studies. STRESS allows the lyme to TAKE

OVER!!!

If you wanna be able to work (which I'm seriously doubting you will be able

to for a while) don't even consider school. The fatigue that sets in from

the treatment/herxing keeps me in bed about 18 hrs. per day. I'm 42, and

feel 80.

I've been in treatment..a litte over 3 mos.My app for SSI disability is in

process. You may want to file if you find you can't work, so you can use

the Medicare Disability insurance down the road. I'm not sure how long you

been sick and all people are different... maybe you won't get as ill as me..

I was bitten in 1974, never diagnosed till this year.

If I hadn't of had a serious post surgical infection in 1997, I'd have never

entered college or got my job at Ford Mo Co. After 11 wks of IV abx and

about 10 wks oral, it was like somebody turned on the lights in my head!!!

HELLO! I enrolled in college got a job... Became a diemaker and was a

junior on my way to an industrial engineering degree!! Top 10% of my class..

then I just started losing it!! Falls, and illnesses... next thing I know,

I can't do simple math and I'm bouncing checks all over the place!! (by

accident!!!! of course! LOL) Most embarrassing.

Indiana MD's didn't diagnosed me with FIBRO, LUPUS and possible MS, and said

I COULD NOT HAVE AN ACTIVE LYME INFECTION AFTER ALL THESE YEARS!! LIES!!!

IGNORANCE!!! UGH!!! Tick me off!!! The folks on lymenet picked up my story

and cry for help on line, like I did yours and pulled me in... the gal was

from TX... great lady! They showed me the way, and I'm on my way to

getting better today! You'll get there too kid... just hang in there.

Just remember, most people, including myself, will tell you, you get MUCH

WORSE before you get better when treating lyme. I'd seriously consider

taking a break from college.. just because of the stress issue alone... not

to mention your GPA... I was nearly a 4.0, and was stubborn and tried TWO

more semesters before I gave up... My GPA was 2.8 when I left and I've

dropped 5 of 8 classes over the last 2 semesters. Despite an offer for a

$3000 scholarship again this fall, I had to put off college again this

semester...just can't do it! Too confused, and short term memory is shot.

Now, if you don't have the lyme in your brain like me, maybe it isn't so bad

and you could try, but I'm telling you, if you get stressed you WILL get

worse.

The first two weeks I was so ill. I have a page full of symptoms but I'm

sure everyone knows what they are through personal experience.

Monday and Tuesday of this week were getting better, I even

marked " fair " on my calendar. But, yesterday and today I took a

major plunge right back to where I was. And I just recently read

something that talked about the buggies (that's what I call them, it helps

me deal) having a four week cycle and that the fourth week is often the

worst??

Most people herx in cycles.. doesn't have to be 4 wks... I usually herx

every 10 days. How often is usually individual depending on various factors.

I have law school in just a few days, a wedding to be in in Canada

in another few weeks and horse shows to go to! I am dreaming? Is

this going to take longer than I think??

Oh yes, depending on how long you have had it. If you've had it a while, it

could seriously be years. And you wanna be sure you took care of it, as it

can be passed mother to child.

I've been so depressed, I am about at the end of my rope. Everyone

keeps telling me to take it one day at a time, and that's

fine . . . But, I need to be prepared and know the " what ifs. " I've just

got so much life just out of my reach waiting for me and it's just killing

me. I want me life back!!

Am I normal? Can you all relate?

My heart just breaks for you... as the reality of your situation sinks in

over the next couple of days, esp. after reading the documentation I sent

your mom... you are going to be so MAD and HURT and DEPRESSED!! I know how

you feel. I want my life back so bad I just cry and cry sometimes...

But we gotta, get up, wipe our eyes, and be strong advocates to help

ourselves and others!!! Just like I'm helping you, please reach out to

others. If we don't tell the world, they won't know and the needless

suffering will never end. We are our children's hope!!

Keep your chin up cookie, and know I'm here for you any time, night or day.

(219)345-5671.

Your new Lymie friend,

Carol Kerr a/k/a " dizz "

[Guest guest]

I've answered my own question - I found the SGOT/AST AND SPGT/ALT are the liver

enzymes, which have been evalated on and off for 20 years, but never to his

extent, although it's still not alarmingly bad. I was a moderate drinker (3-4

drinks/week) - now 3-4 drink/month since the symptoms started). I've stopped

completely now.

Do lymies test out of tolerance i.e., is it part of the disease? Also, I know I

'm not reading the 'opinions' on different labs. Is MDL accepted as a 'good'

testing facility for lyme?

Sheryl

[ ] Re: Lyme Tests

Hi, I'm the daughter with Lyme, " Kerrie! "

Hi Kerrie!! Nice to know you!!

It makes me feel better that Kell agrees that Herxing is certainly a

reliable test. My husband and I have been talking and I think my

negative test was most likely just my blood test.

If your MD gave you a lyme titer test, it was worthless anyway!! The sheet

I faxed your mom about understanding western blots will help you to

understand all about the WB blood test adn why it may come back negative.

And like I said, some people never get a positive test for one reason or

another, but the RESPOND to treatment and that's all that matters in my

book!!

Since it took 6 weeks to get back, I doubt they have the urine test back yet

that was just sent 2 weeks ago. Is Igenex somewhat slow about results?

NOPE, lyme and tick born disease bacteria is very slow growing, thankfully

or we'd be dead by now!! That's one reason the medical field has overlooked

the disease for so long. It doesn't act like normal bacterial infections!

It's a virus technically, but dies from antibiotics like a bacteria.. get

what I mean?? Since it grows so slow, it takes time to get the results

back!

Anyone know? The urine tests were taken (by me, yuk) three, five and seven

days after I started antibiotics. I was Herxing pretty good by then. It

started just the next day after I started my antibiotics.

And it hasn't let up . . . .

Drink plenty of water!! Also, the sheet I sent your mom on herxing... My

LLMD feels there is no glory to be gained by trying to handle going through

herxes on abx. He suggests you stop the abx for a day or two and give your

body, esp. liver a chance to rest.

This has been most beneficial for me and many others. The one time I tried

to live through the herx, I got much worse and it set me way back! So beware

of the herxes. If they feel intense, you can stop the abx for a couple of

days and save yourself misery and not adversely affect your treatment.

If someone could just tell me I'm normal, it would help me so much.

Oh honey, you are so the normal lymie!! Don't fret. Hop on line to lymenet

and read the abundance of stories posted there!! Mine is there too. Search

for " My Story " posted by " pleezwakemeup " , that's my old handle, now I'm

dizz " .... much easier to log on!! LOL As you read them, you will feel like

you wrote them, they'll be so much like you!!! What's going on in this

country with regard to this disease is CRAZY!!!

I am on 500mg of Biaxin twice a day. From some reading I've done, I

guess that's a pretty serious load?? For an oral antibiotic that is? I toy

with the idea of cutting back since I have been so ungodly sick,

Your instinct to cut back, is correct... and you are right! You are on a

good heavy dose! Good for your doctor!! I've already told you, I'd stop

them for 2-3 days and give your body a rest. When you herx it's your bodies

reaction to being OVER TAXED with dead lyme ketes. Drink plenty of fluids to

flush and stop killing the boogers for a few days will make you feel MUCH

BETTER!!

but then I figure it must be working, so might as well hit it head on. I'm

just getting really panicky because school starts back up for me on Monday

and I don't know how in the world I am going to do it. Let alone the job I

haven't been to in a month.

Honey, I hate to say this to you, but from my experience, and I already

posted, I was a junior in college when I started treatment. That first bad

herx that I didn't stop the abx did my memory in. I've still not got enough

back to remember my trade or school studies. STRESS allows the lyme to TAKE

OVER!!!

If you wanna be able to work (which I'm seriously doubting you will be able

to for a while) don't even consider school. The fatigue that sets in from

the treatment/herxing keeps me in bed about 18 hrs. per day. I'm 42, and

feel 80.

I've been in treatment..a litte over 3 mos.My app for SSI disability is in

process. You may want to file if you find you can't work, so you can use

the Medicare Disability insurance down the road. I'm not sure how long you

been sick and all people are different... maybe you won't get as ill as me..

I was bitten in 1974, never diagnosed till this year.

If I hadn't of had a serious post surgical infection in 1997, I'd have never

entered college or got my job at Ford Mo Co. After 11 wks of IV abx and

about 10 wks oral, it was like somebody turned on the lights in my head!!!

HELLO! I enrolled in college got a job... Became a diemaker and was a

junior on my way to an industrial engineering degree!! Top 10% of my class..

then I just started losing it!! Falls, and illnesses... next thing I know,

I can't do simple math and I'm bouncing checks all over the place!! (by

accident!!!! of course! LOL) Most embarrassing.

Indiana MD's didn't diagnosed me with FIBRO, LUPUS and possible MS, and said

I COULD NOT HAVE AN ACTIVE LYME INFECTION AFTER ALL THESE YEARS!! LIES!!!

IGNORANCE!!! UGH!!! Tick me off!!! The folks on lymenet picked up my story

and cry for help on line, like I did yours and pulled me in... the gal was

from TX... great lady! They showed me the way, and I'm on my way to

getting better today! You'll get there too kid... just hang in there.

Just remember, most people, including myself, will tell you, you get MUCH

WORSE before you get better when treating lyme. I'd seriously consider

taking a break from college.. just because of the stress issue alone... not

to mention your GPA... I was nearly a 4.0, and was stubborn and tried TWO

more semesters before I gave up... My GPA was 2.8 when I left and I've

dropped 5 of 8 classes over the last 2 semesters. Despite an offer for a

$3000 scholarship again this fall, I had to put off college again this

semester...just can't do it! Too confused, and short term memory is shot.

Now, if you don't have the lyme in your brain like me, maybe it isn't so bad

and you could try, but I'm telling you, if you get stressed you WILL get

worse.

The first two weeks I was so ill. I have a page full of symptoms but I'm

sure everyone knows what they are through personal experience.

Monday and Tuesday of this week were getting better, I even

marked " fair " on my calendar. But, yesterday and today I took a

major plunge right back to where I was. And I just recently read

something that talked about the buggies (that's what I call them, it helps

me deal) having a four week cycle and that the fourth week is often the

worst??

Most people herx in cycles.. doesn't have to be 4 wks... I usually herx

every 10 days. How often is usually individual depending on various factors.

I have law school in just a few days, a wedding to be in in Canada

in another few weeks and horse shows to go to! I am dreaming? Is

this going to take longer than I think??

Oh yes, depending on how long you have had it. If you've had it a while, it

could seriously be years. And you wanna be sure you took care of it, as it

can be passed mother to child.

I've been so depressed, I am about at the end of my rope. Everyone

keeps telling me to take it one day at a time, and that's

fine . . . But, I need to be prepared and know the " what ifs. " I've just

got so much life just out of my reach waiting for me and it's just killing

me. I want me life back!!

Am I normal? Can you all relate?

My heart just breaks for you... as the reality of your situation sinks in

over the next couple of days, esp. after reading the documentation I sent

your mom... you are going to be so MAD and HURT and DEPRESSED!! I know how

you feel. I want my life back so bad I just cry and cry sometimes...

But we gotta, get up, wipe our eyes, and be strong advocates to help

ourselves and others!!! Just like I'm helping you, please reach out to

others. If we don't tell the world, they won't know and the needless

suffering will never end. We are our children's hope!!

Keep your chin up cookie, and know I'm here for you any time, night or day.

(219)345-5671.

Your new Lymie friend,

Carol Kerr a/k/a " dizz "

[Guest guest]

I can't believe it either!!! Really ticks me off to no end when I think of

all the unnecessary misery I've endured... guess it was just my lot in life.

.. thankfully I'm getting help now for what it's worth.

I'm on my third or fourth day of increased clarity... what a thrill. This is

a first in the three months I've been in treatment. Maybe it will stick

around... usually it fades so I'm not getting my hopes too high, but I'm

very encouraged!!

I've got that wonderful lab web site for you! The web address is very

self-explanatory, but I have to look it up every time! LOL

www.labtestsonline.org

I know what you mean about their impatience in explaining things. Sometimes

no matter how hard I try, I just don't get things too...

It will come back though. We will get better. Then we will show them all!!

Just hang in there!

Take care,

Carol Kerr

[Guest guest]

Carol-

Thanks so much for the web site.. I'll be dealving into it. The Quest

Diagnositcs website wasn't too bad either.

Hang in there!

Sheryl

Re: [ ] Re: Lyme Tests

I can't believe it either!!! Really ticks me off to no end when I think of

all the unnecessary misery I've endured... guess it was just my lot in life.

. thankfully I'm getting help now for what it's worth.

I'm on my third or fourth day of increased clarity... what a thrill. This is

a first in the three months I've been in treatment. Maybe it will stick

around... usually it fades so I'm not getting my hopes too high, but I'm

very encouraged!!

I've got that wonderful lab web site for you! The web address is very

self-explanatory, but I have to look it up every time! LOL

www.labtestsonline.org

I know what you mean about their impatience in explaining things. Sometimes

no matter how hard I try, I just don't get things too...

It will come back though. We will get better. Then we will show them all!!

Just hang in there!

Take care,

Carol Kerr

[Guest guest]

Hi Sue and All,

Just got my Lyme test results from IGeneX today and would like for anyone to

tell me if they are positive for Lyme. Am going to a LLMD Thursday but can't

wait to get some feed back. Here goes: On the IgG Western Blot, these are the

ones that have ++ before them - ++23-25 dDA, ++31, ++34, ++39, ++41 and ++93.

On the IgM Western Blot ++23-25 kDa, ++31,++34,++39 and ++41. I really

couldn't tell if they were plus signs or asterisk signs before these numbers.

On the Babesiosis: B. microti, IgM 1:40 TITER.

Your responses are appreciated.

H.

[Guest guest]

Your Lyme titers are definitely positive the acute and long term antibodies.

So that means that you have chronic, active Lyme infection. The babeosis

is also positive, but a low titer. Hopefully that one should get treated

with the antibiotics you're about to start. Yay for Igenex!!

_________________________________________________________________

Take advantage of our best MSN Dial-up offer of the year — six months

@$9.95/month. Sign up now! http://join.msn.com/?page=dept/dialup

[Guest guest]

Hi,

I didn't post all of my IgeneX Lyme report, here is the rest: IGG 31+, 41 &

66 +/-

IGM " 18 & 66 are+, 30, 31,41, and 58 are +/- Are these tests positive for

Lyme?

Thanks,

H.

[Guest guest]

this is my second post to you. You can go to google.com ant put in

(antibiotics without prescription) and there are places to order. I ordered

amoxil several months ago and got it in 3 or 4 weeks. Anything that I have

ordered

like this I have gotten. Didn't know where it was coming from until I got the

box and it was from Belgium.

Like Sue told me you should be off antibiotics 6 weeks to do the IGM & IGG,

which is almost impossible if a person is very ill. I was only off about a

week, I was in such a big hurry and still got readings that the LLMD said were

very suggestive of Lyme after I finally went to him. I was getting antibiotics

from my ENT who was very liberal with antibiotics. But the only way this LLMD

diagnosis Lyme is with the Lyme Dot Blot PRC. He gives two week of Flagyl and

Zitromax and than does a urine specimen for three days toward the end of the

two weeks and if you have Lyme so he says most of the time Lyme will spill into

the urine because of the antibiotics killing the Lyme. So I didn't have to

go through the IGG and IGM which are blood tests, which I did through my ENT

trying to made diagnosis shorter but only prolonged it.

Regards,

H.

1-What is the likehihood that I will be allowed to go on some form of

antibiotics without a positive test result? Chris

[Guest guest]

Helen, thanks for your reply. I have a dr. appt in a couple hours so we'll see

what happens. At this point, I'm not ready to order abx on my own but its good

to know I could get them if I ever needed to go that route. Good luck to you.

Chris

Re: [ ] Lyme Tests

this is my second post to you. You can go to google.com ant put in

(antibiotics without prescription) and there are places to order. I ordered

amoxil several months ago and got it in 3 or 4 weeks. Anything that I have

ordered

like this I have gotten. Didn't know where it was coming from until I got the

box and it was from Belgium.

Like Sue told me you should be off antibiotics 6 weeks to do the IGM & IGG,

which is almost impossible if a person is very ill. I was only off about a

week, I was in such a big hurry and still got readings that the LLMD said were

very suggestive of Lyme after I finally went to him. I was getting antibiotics

from my ENT who was very liberal with antibiotics. But the only way this LLMD

diagnosis Lyme is with the Lyme Dot Blot PRC. He gives two week of Flagyl and

Zitromax and than does a urine specimen for three days toward the end of the

two weeks and if you have Lyme so he says most of the time Lyme will spill into

the urine because of the antibiotics killing the Lyme. So I didn't have to

go through the IGG and IGM which are blood tests, which I did through my ENT

trying to made diagnosis shorter but only prolonged it.

Regards,

H.

1-What is the likehihood that I will be allowed to go on some form of

antibiotics without a positive test result? Chris

[Guest guest]

> YOU HAVE SOME SORT OF INFECTION HENCE THE BAND THAT

> ARE PRESENT. YOU ARE NOT SUPPOSED TO HAVE ANY BANDS..

That isnt entirely true. You can show bands and it be past infection and

it may not even be Lyme. There are Lyme specific bands, and ones that

crossreact with other bacterium.

[Guest guest]

>

> well here we go again, if you have bands you have been

> exposed to something!!

Yes, exposed, but to what? not all bands are Lyme specific. You can have a

past infection, be one of the few that gets over it and be fine, but still

show the past bands.

if you are bieng treated for

> the first time then how can you have a prior infection

> if you have not been exposed!it does not make sense to

> me.

If you show as past infection through Western Blot then you have had a past

infection. Not everyone recalls the first bite and sometimes we just get

through it and recover fine.

> what I mean is an infection that is not active to mean

> could not be a first infection.again there is no

> doctor in my name just common sense.

I dont follow this. I used to think that all bands were Lyme and

meant you had infection. Untill I learned more and did massive amounts of

research, in conjunction with talking with my Very LLMD. Not all bands are

Lyme. Not all bands mean you have current infection.

[Guest guest]

Can you tell me which bands are lyme specific? My 13 year old son just tested

positive for five bands a few weeks ago. He is going to the neurologist

tomorrow, so I would like to know what I'm dealing with a little before I go in.

His only symptom is severe headaches several times a week. My other son tested

positive for 3 bands 18 months ago, and definitely has a significant case of

CNS Lyme. He is the 16 year old that I have been asking the group about--5

months of various treatments--no improvement. This is so confusing.

Betsy

[Guest guest]

HI,

Yes, lyme is very confusing. And no one person is the same. There are 300

plus stains and we do not know which antibiotic or treatment works with what

strain. Sometimes you need to stay on an antibiotic 6 months before you will

see a change. Also, don't worry about the bands, they are for surveillance

only. LYME IS A CLINICAL DIAGNOSIS. There are hundreds of interpretations of

those bands. I printed them off once it was over 50 pages. Just use your head

with whatever you decide. What works for one may not work for you. Find a

good LLMD and together figure out what needs to be done.

I have had lyme really bad for 11 years and have talked to lots of people.

We are all different but the same in this disease

Best of luck,

Connie, MI

[Guest guest]

It is so hard to base everything on testing. The tests may be positive one

time and then negative another. Then once you have lyme and your symptoms

are gone, you can still show bands of lyme.

Best to go with the symptoms, etc. A neurologist is a good start for

headaches........even though they will only run a titer count for

lyme.........which for most it will come up negative....unless you have

found a LL neurologist.........which would be wonderful....I hope that is

the case.

How is your 16 year old functioning in school??

Check your state regulations........he may need specific educational

guidelines and considerations......THIS IS NOT a Special Education

Classification.........and is not handled by the Child Study Team.......It

is usually taken care of by the Parent and the Guidance Department.

In the State of NJ, it is actually in the State Education Codes....mandating

the education of students and teachers about lyme disease. It is also

mandated that a student suffering from lyme be granted any needs/provisions

that individuals may need to succeed in School.

Many students are given a longer time to complete assignments......some put

in half days......attendance restrictions are waved........etc......Please

check into that for both of your children.

Good luck with the neurologist.........a good MRI of the Brain with Contrast

is probably what the Neurologist will start with.

Just a guess on my part.

Conniek nwnj

[Guest guest]

<<<<<Yes, lyme is very confusing. And no one person is the same. There are

300 plus stains and we do not know which antibiotic or treatment works with

what

strain. Sometimes you need to stay on an antibiotic 6 months before you

will see a change. Also, don't worry about the bands, they are for

surveillance

only. LYME IS A CLINICAL DIAGNOSIS.>>>>>>>>>

DITTO

I have suffered from Lyme since 1995.......even though the lyme itself as I

and my Drs. believe, is gone......I suffer from the damage left behind. I

have a sleep disorder and nerve damage.

I am stuck with those for the rest of my life.

I also have degenerative disk disease..........inherited, but I'm sure

aggravated by the lyme. Those buggers love to go where you are the

weakest.

Now, degenerative disk disease, a sleep disorder, and nerve damage must seem

horrible and painful to some........I am one of the lucky ones.........I

feel pretty good on most days, I teach full time, and love to do pottery,

canoeing, and I live on a beautiful lake that I enjoy all year

round.......I remember those days, weeks, years, of feeling like I wanted my

life to be over, because I felt so horrible and could hardly

function.........and is one of the reasons I stay with this group.......to

let others know there is hope .

I feel for all of you that are suffering.........and I pray relief is in the

near future for all of you........a cure is coming......we all have to

believe that!

Conniek nwnj

[Guest guest]

I wonder if there is some cross reactivity to organisms like the spirochettes

that cause gingivitis ... are there other spirochettes that make up the

normal flora of the body elsewhere...in the lyme tests being used most

frequently?

Thanks for any input,

Donna

[Guest guest]

I read somewhere that bacteria which cause dental decay is a spirochette and

that it is almost identical to the lyme spirochette - with the only

difference being that the dental one does not have a tail to propel itself

like the lyme one does .... We obviosuly get a lot sicker from lyme than we

do from cavities so there's more too it but I recall that much from a dental

health and lyme article that I read years ago. It was posted on the list so

may be if there is an archive online somewhere the article might still be

available ... jaqui

Re: [ ] Lyme tests

>

> I wonder if there is some cross reactivity to organisms like the

spirochettes

> that cause gingivitis ... are there other spirochettes that make up the

> normal flora of the body elsewhere...in the lyme tests being used most

frequently?

>

> Thanks for any input,

>

> Donna

[Guest guest]

Dear Sally,

Unfortunately, as far as I know there is no reliable lab test for Lyme

infection and/or reactivation. That's a big part of the problem with

the " Lyme wars " that have been raging over diagnosis and treatment.

Another quirk is that, for some reason, blood tests for borellia often

don't turn up positive until *after* you've been treated with

antibiotics for awhile. And a person may have a Lyme-like illness that

is actually caused by bartonella or other tick-borne pathogen, which

may or may not show up on a blood test, depending on what they are

specifically looking for.

There was a very encouraging development in the last week. Here's an

excerpt from an article:

" A key Senate panel approved legislation proposed by Senator Chris

Dodd to

help identify and treat Lyme disease. The Dodd measure was included in

the

annual funding bill for the Department of Health and Human Services.

" This provision encourages the Centers for Disease Control (CDC) to

develop

sensitive and more accurate diagnostic tools and tests for Lyme

disease; to

improve surveillance and reporting of Lyme and other tick-borne

diseases;

and to expand prevention of Lyme disease through increased community-

based

public education and the creation of a physician education program. "

And I know the Lyme Institute at Columbia U. in NYC has been working

on the testing issue as well, however I don't know how much progress

they've made.

Perhaps other forum members have more information.

Best wishes,

Marcia on

in Salem, Massachusetts

On Aug 7, 2009, at 8:46 PM, sally_hajkowski wrote:

> {Moderator: The Files section is a user-updated section, therefore

> clearly out of date. Your best bet is to search the archives. There

> has been much discussion regarding the most accurate Lyme testing.}

>

> Hello, I checked the " files " and nothing had been updated since 05.

> If a person had Lyme disease (20 years ago) and now is suffering

> from CFS I think there could be an underlying active chronic or

> reactivated Lyme infection. What would be the best tests to

> determine if there was an active chronic or reactivated Lyme

> infection?

>

> Thanks for the help, sally

>

>

>