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Hi, I was jsut reading your posting about your daughter and was wondering

what Vantin is. I have never heard of this drug being used for Lyme. Do you

know what class of abx it is? I think that your daughter should be symptom

free (NO SYMPTOMS) for at least 3-6 months before stopping all abx. I have

been better before only to relapse months or a year later. I don't think I

was ever on abx long enough and never killed off the spirochete for good.

Hope your daughter continues to feel better. Please think about additional

treatment. She might have a chance to get cured if she is treated for a long

enough time. -Val

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I have been reading this digest for a while and really enjoy the

information.

I finally got my 13 year old daughters' February test results. She

started out getting ill in July(both my daughters had pneumonia and they

never really are ever sick with anything) and was put on Zithromax and

then Augmentin. In September she started getting headaches, quite

severe and over the counter medicine did not help. She received more

antibiotic in October for possible sinus problems. She then had a

continuous headaches from October through January. Some days not as bad

as others but always there in the morning and getting worse towards the

end of the day. She went from specialist to specialist and had CAT Scan.

The first lyme test was done when she was still on antibiotics and

taking daily dosages of tylenol or ibuprofen. This is from LabCorp:

Lyme Total AB., EIA Negative

Lyme AB, IGM, EIA 1.95H Index

Lyme AB IGM Interp Positive

Lyme AB IGG By WB: P39 AB and P23 Present

Lyme IGG WB Interp Negative

Lyme AB IGM BY WB: P399 AB. and p23 AB Present

Lyme IGM WB Interp Positive

Test at StonyBrook: Lyme Serology was borderline and Western Blot IgG

and IgM both Inderminate

As she had no history of circular rash and only headache in forehead

above eyes and was extremely fatigued and slept alot, all of the doctors

would not diagnose Lyme or give us any antibiotics. She did have body

rashes and ear lobe swollen and pulse rate skipping but even the Lyme

doctor said nothing to do with Lyme when ever we tried to give them a

symptom that we felt would help in the diagnosis.

She repeated above tests in January with the following results:

Labcorp.

Lyme AB Total Immunoglobulins 1.15 H Index

Lyme AB Interp. EIA Positive

Lyme Disease, Quant, IgM 1.46 H Index

Lyme AB IgM Interp. EIA Positive

P42 Present

Lyme IgG WB Interp. Negative

P23 AB Present

Lyme IgM WB Interp. Negative

Stonybrook Western Blot IgM and IgG both Inderminate

Finally in February I insisted on antibiotics and she was given 6 weeks

of Vantin. She has not had the headaches since 2 weeks after the last

course of antibiotics and is almost back to her old self. I am waiting

for the other shoe to drop so to speak.

My question is to all of you is what your opinions are as to whether

she had, has or will have problems in the future. Was she treated long

enough? etc. Should she again be tested in a few months to see if her

totals have changed?

Sorry this is so long and thank you all for any help you give.

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Hi....I read your posting but don't know what all of the results you posted

were for, even though I have been dealing with this disease for over a

decade. But sometimes when a definitive serology isn't present, a urine

antigen can be.

Usually the doctor puts the patient on a 5 day course of strong antiobiotics

and you take urine samples for day 3,4 5, (first am) and freeze and send out

to Igenex Labs in Palto Alto, California. In all the years I have had lyme,

I have only had 2 positive serology tests, but my urine tests have always

been high. Try to collect when herxing. I don't know of another lab that

does that particular test, and I don't think insurance will cover it...but

maybe they do now.

Good luck, and don't ever stop seeking answers. The fact that her headaches

subsided when on abx seems like it may be connected. Also, she did have some

positive tests as you wrote....usually you don't get false positive .....more

often you get false negatives..

Good luck, take care,

Gail

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Hi Barbara,

I sent you an explanation of the WB and what the results mean by private

email, as it is quite long and involved, I hope this will help answer some

of your questions,

Best to you and your daughter.

Marta

>From: Barbara <u1004720@...>

>

>I have been reading this digest for a while and really enjoy the

>information.

>I finally got my 13 year old daughters' February test results. She

>started out getting ill in July(both my daughters had pneumonia and they

>never really are ever sick with anything) and was put on Zithromax and

>then Augmentin.

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lab corp......hahahahahahahah..... i went undiagnosed for 2 years partially

thanks to them .....in my opinion and many other lymies they are the worst

testing lab for lyme....to have test done by them is more a waste of money

then anywhere else......igenex ....a lab that does mainly lyme only claims a

40 % accuracy rate......LYME IS DIAGNOSED BY SYMPTOMS blood test may be of

some help however even the social security agency now puts little weight in

lyme blood test.....with all the information available i can't believe that

so many are still hung up on testing positive ....the elisa tests and titre

test are by the labs own addmissions totally unreliable.....western blot is

not far behind ......the pcr welll the jury is still out on that

one......sorry to sound aggravated but having lived with this disease for 11

years and gone thru so much i get so* & & )()*^%$## ....PEOPLE GET THE LIST OF

SYMPTOMS .....COMPARE THEM TO HOW U FEEL.......THEN LET U AND UR DOCTOR

DECIDE IF HE SAYS NO.....GET ANOTHER DOCTOR..... in 1988 i was told by 4

doctors that even though i had 37 lyme symptoms that i cpould not have lyme

because i did not have a bullseye rash......well we now know that less than

50% of lymies have one......but that was the standard then ......no wonder so

many of us suffer from chronic lyme........

Reid

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  • 9 months later...
Guest guest

11 years ago my triglycerides and cholesterol were high even though I

exercised and ate a healthy diet. I was tested for hypothyroidism using only

a test of my free thyroxin, which was a low normal. 5 years later I was

tested again using the TSH test and found out that I have Hashimoto's

hypothyroidism. My mother was tested and diagnosed with it also, and it was

only then that we found out that my grandmother had been diagnosed with it

years before. Ever since I began taking Synthroid for the hypothyroidism my

triglycerides and cholesterol have been normal, even when I eat high

cholesterol foods and although I have been unable to exercise for the last

year.

I think that everyone should be tested for thyroid problems, especially if

they are female, over- or under-weight, and/or suffer from fatigue.

I would like to point out that my hypothyroidism symptoms were atypical. I

suffered from oily rather than dry skin, and I was intolerant of heat

(sweating very easily) rather than intolerant of cold. I did have a low

basal temperature, but that no longer applies as I now suffer from a chronic

low-grade fever.

I would also like to mention that while taking Synthroid has alleviated some

of my symptoms, I still suffer from increasing fatigue, I am still

overweight and I am still intolerant of heat. My skin has become more

normal, but I am now in my late 30's and I'm not surprised that it has

become drier. I mention these things because I think that its quite possible

to have hypothyroidsim AND CFS/FMS, in fact I've read that hypothyroidism is

common in Fibromyalgia patients. But I don't think that treating the

hypothyroidism is the whole answer and in fact I think that my doctors often

passed off my fatigue as being caused by hypothyroidism and depression and

thus failed to look further for the real cause. The latter is a source of

much frustration for me, as I have a history of depression but find that I

often become depressed because I am so tired, rather than becoming tired

because I am depressed. Who WOULDN'T find it depressing to have chronic

fatigue? I sometimes wish all my doctors would come down with it and then

try to explain to their psychiatrists that they really have a medical rather

than mental problem. I know this is an evil thought but they just make me so

angry sometimes!

Anyway, I recommend that everyone be tested for hypothyroidism with a TSH

test just because it is a simple, easy (and I think it must be inexpensive

or it wouldn't be covered for me!) test for a condition that has often been

overlooked.

Abra

>From: mcamp10139@...

>Reply-onelist

>onelist

>Subject: Re: tests results

>Date: Thu, 2 Mar 2000 18:59:54 EST

>

>In a message dated 3/1/00 10:42:33 PM Eastern Standard Time,

>onelist writes:

>

><< my choesterol before this DD was 130. It's now almost 300 and my eating

> habits are probably better. Lack of excercise?

>

> White blood cell: 3.6 normal range: 4-10 >>

>

>Christa, you have the same results that I had for 6 years. Now, after 7

>years

>with CFS, the cholesterol has gotten better but the WBC count is still low.

>Mine was 3.2 last time. My doc was concerned about this result. Low WBC

>count is usually indicative of a chronic viral infection, although it is

>seen

>in

>chronic bacterial infections such as brucellosis. What to do? Nothing to

>do

>re the WBC count. Your doc should be concerned about the cholesterol

>unless it is just a one time deal. Have you gained weight? If so, you

>should

>try to lose weight. I took niacin which is recommended in the Merck Manual

>as a first line treatment for high C. In addition to niacin (you can get

>niacinamide

>which doesn't cause flushing), I quit eating any ice cream, most cheese and

>other animal products except for the chicken and fish that I tried to eat

>to

>maintain protein intake. C went from 280 to 210. However, I also lost

>about

>15 pounds. What were your tryglicerides? Mine were high when the C was

>high.

>I guess the good news is that after 7 years some of my results are getting

>better so hopefully you can look forward to some improvement too.

>

>Mike

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

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In a message dated 3/1/00 10:42:33 PM Eastern Standard Time,

onelist writes:

<< my choesterol before this DD was 130. It's now almost 300 and my eating

habits are probably better. Lack of excercise?

White blood cell: 3.6 normal range: 4-10 >>

Christa, you have the same results that I had for 6 years. Now, after 7 years

with CFS, the cholesterol has gotten better but the WBC count is still low.

Mine was 3.2 last time. My doc was concerned about this result. Low WBC

count is usually indicative of a chronic viral infection, although it is seen

in

chronic bacterial infections such as brucellosis. What to do? Nothing to do

re the WBC count. Your doc should be concerned about the cholesterol

unless it is just a one time deal. Have you gained weight? If so, you should

try to lose weight. I took niacin which is recommended in the Merck Manual

as a first line treatment for high C. In addition to niacin (you can get

niacinamide

which doesn't cause flushing), I quit eating any ice cream, most cheese and

other animal products except for the chicken and fish that I tried to eat to

maintain protein intake. C went from 280 to 210. However, I also lost about

15 pounds. What were your tryglicerides? Mine were high when the C was high.

I guess the good news is that after 7 years some of my results are getting

better so hopefully you can look forward to some improvement too.

Mike

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  • 1 year later...
Guest guest

> band 41 positive

> band igm 23 positive

Is the 41 an IGM or an IGG? the 23 is a lyme specific band, its for

an outer surface protien of the lyme itself, shown only in lyme

disease, the 41 is for flagellan like bacteria and is the 1st to

appear for lyme,but is supposedly (from what I have read) not

specific for lyme itself--I have read in some few articles that it

is, but either way it counts.

If both were IGM's you are literally + no matter what kind of dr you

goto (still goto a LLMD) as the CDC criteria is 2 out of 3 igm bands.

If the 41 is an IGG, it shows that your body has been making an

antibody response for a bit, since IGG shows later on in infection.

To be + for the IGG part of the test you need to have 5 out of 10

specific CDC required bands.

SO even thou, if the IGM is only the 23, it's still significant, as

it should only show up if it's lyme disease, no other cause or reason.

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- it showed WB IGG at 41 positive

and 23 at IGM??

So does it mean I am positive????

-- In @y..., pttllc@a... wrote:

> > band 41 positive

> > band igm 23 positive

>

> Is the 41 an IGM or an IGG? the 23 is a lyme specific band, its for

> an outer surface protien of the lyme itself, shown only in lyme

> disease, the 41 is for flagellan like bacteria and is the 1st to

> appear for lyme,but is supposedly (from what I have read) not

> specific for lyme itself--I have read in some few articles that it

> is, but either way it counts.

> If both were IGM's you are literally + no matter what kind of dr

you

> goto (still goto a LLMD) as the CDC criteria is 2 out of 3 igm

bands.

> If the 41 is an IGG, it shows that your body has been making an

> antibody response for a bit, since IGG shows later on in infection.

> To be + for the IGG part of the test you need to have 5 out of 10

> specific CDC required bands.

> SO even thou, if the IGM is only the 23, it's still significant, as

> it should only show up if it's lyme disease, no other cause or

reason.

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, you are not + by CDC standards. However having bands 23 which is the

outer surface protein of the Lyme spirochete, and band 41 'usually the first

to appear after Bb infection. This would point to you having Lyme.

Metzler Chocolates

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> The only way to have band 23, which is totally specific for the

lyme bacteria, is to be exposed to it. Is this your 1st western blot

test?? Some doctors will treat a person for lyme, IF they have 1

specific band, other doctors DO NOT unless you meet the CDC criteria

of 2 out of 3 specific bands on IGM, and 5 out of 10 specific bands

on IGG.

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  • 6 months later...

stevku@... wrote:

Hi Everyone,

I went back to the doctor today. She told me that my thyroid tests

came

back fine.

Liz,

Did she give you the actual numbers? How about a copy

of the tests?

However she also told me that I have anemia,

but she doesn't

know why. She wants me to undergo a lot of tests trial and error

to find

out what's going on. She wants me to start out by going to a

gastroelogist (sp.) to rule out an ulcer, I have NO symptoms

of ulcers.

Huh? Anemia is related to ulcers?

To

me it seems to coincidental to be having neck pain,

Can you describe your neck pain? I had a lump in my neck a few months

ago, off and on, then pain came and I made it go away with Jell-O... but

unfortunately now the lump is back (pain came back a little too, but once

again I got rid of the pain with Jell-O). :( I'm getting freaked

out and will make an appt. with a chiro sometime this week.

--

Mindy

-----------------------

"...that they may be one..."

- Jesus, 17:22

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Hi Mindy,

No, she didn't give me the actual numbers, I'll have to get them from

her.

As for the neck pain: When I'm having actual pain it's usually more on

the right side, however it is a little on the left and in the middle, but

the right is just about always worse. When I'm not having " ouch pain " if

you know what I mean, there's a pretty constant uncomfortable feeling

across the front of my neck. Does this make any sense?

Thanks!!!

Liz

------

Liz,

Did she give you the actual numbers? How about a copy of the tests?

Can you describe your neck pain? I had a lump in my neck a few months

ago, off and on, then pain came and I made it go away with Jell-O... but

unfortunately now the lump is back (pain came back a little too, but

once again I got rid of the pain with Jell-O). :( I'm getting freaked

out and will make an appt. with a chiro sometime this week.

--

Mindy

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stevku@... wrote:

When I'm not having "ouch pain" if

you know what I mean, there's a pretty constant uncomfortable feeling

across the front of my neck. Does this make any sense?

Hmm, that is where your thyroid is located. Interesting...

in that case, I don't think jello would work for you! (my neck pain was

more of a joint-related pain)

--

Mindy

-----------------------

"...that they may be one..."

- Jesus, 17:22

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  • 1 month later...
  • 4 years later...

test reuslts

free testosterone 7.4 nmo/l range 6-27

lh 3 iu/l range 1-9

fsh 2 iu/l range 1-19

shbg and free testosteron have not come back as yet,i deidcded to phone the lab

at hospital

and theb guy really beleioves those are all normal!!

and says they did do my shbg in may and did tell my doctor and said it was

normal

there definition of normal is not mine

regardws paul

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