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susanasophia	Oct-30-09, 08:41 AM (CMT)
"Lyme"
I asked my primar care doctor this morning, about getting tested for Lyme. She had me go to the lab and get bloodwork. Do you think thats enough to diagnose it? Testing for the Lyme antibody? Or are there other more extensive tests that should be done. Will the bloodwork be a good indicator of the disease?
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Table of contents

RE: Lyme, Rachel328, Oct-30-09, (1)

RE: Lyme, susanasophia, Oct-30-09, (2)

RE: Lyme, dcook60, Oct-30-09, (3)

RE: Lyme, thetsarisa, Nov-01-09, (4)

RE: Lyme, mgb, Nov-01-09, (5)

RE: Lyme, susanasophia, Nov-01-09, (6)

RE: Lyme, thetsarisa, Nov-02-09, (7)

RE: Lyme, susanasophia, Nov-02-09, (8)

RE: Lyme, susanasophia, Nov-02-09, (9)

RE: Lyme, susanasophia, Dec-07-09, (10)

RE: Lyme, thetsarisa, Dec-08-09, (11)

Lyme testing, 30yrsofheadache, Dec-08-09, (12)

RE: Lyme testing, susanasophia, Dec-08-09, (13)

RE: Lyme testing, thetsarisa, Dec-09-09, (14)

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Messages in this topic

Rachel328 Oct-30-09, 09:59 AM (CMT)

1. "RE: Lyme"

Bloodwork is enough. I was tested for it, too. My results were negative.

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susanasophia Oct-30-09, 10:21 AM (CMT)

2. "RE: Lyme"

Thank you Rachel. I appreciate your note. I hope youre feeling well today. Love, Susan

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dcook60 Oct-30-09, 10:56 AM (CMT)

3. "RE: Lyme"

if you go to any lyme organization or patient-advocacy web group, you will find that blood tests for this are notoriously NOT accurate.
lyme is diagnosed with symptomology. very seldom are the antibody tests worth their salt. they can be useful, usually, only after a very recent exposure.
the lyme bacterium, borrelia burgdorferi, is very good at hiding in the tissues. before you get all convinced that you have this nasty disease, it helps a lot to read a lot about it.
i'm sorry that i no longer know the current sites, but you can easily find them online. lyme has been found in every state, but most doctors think it is an unlikely, and even controversial, diagnosis.
i had the diagnosis, and treatment, 12 years ago. i did not improve, and that's mostly because it was many years between exposure and treatment. i have no idea if the bacterium is still active in my body.
surely, if you've had a red, circular (bullseye, in some cases) rash, you should be tested asap. dianne

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thetsarisa Nov-01-09, 02:27 PM (CMT)

4. "RE: Lyme"

Bloodwork is NOT enough, especially when you got Elise test. Western Blot would be much better but even that is not sure test to detremine whether or not your test is accurate.
Lyme's is extremely difficult to test- diagnose, and it would be best if went to Lyme's dr and lab to get tested.
read here:
Important: False negative test results have been widely reported in both early and late disease.
http://www.canlyme.com/diagnosis.html
Risa
ps learn also about Lyme's on Amy Tan site:
http://www.amytan.net/
You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.

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mgb Nov-01-09, 03:56 PM (CMT)

5. "RE: Lyme"

one test is not enough. risa is absolutely correct.
it takes serial testing, western blot is better. even then, if you had it long ago it's done it's damage. inflammation levels may be up from, so docs can measure that.

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susanasophia Nov-01-09, 07:30 PM (CMT)

6. "RE: Lyme"

thank you guys.
should i go see an "infectious disease" doc?
would that be "specialty" enough?
how is it my PCP thinks a simple blood test is enough to diagnose me?
its like pulling teeth to get her to get more than a simple blood test done.

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thetsarisa Nov-02-09, 02:13 AM (CMT)

7. "RE: Lyme"

""how is it my PCP thinks a simple blood test is enough to diagnose me?""
Unfortunately, majority of MDs are seriously, outrageously underinformed and undereducated on the subject of Lyme's disease. Is as bad here in Canada:
http://www.cbc.ca/canada/british-columbia/story/2008/02/25/bc-lymedisease.html
My best bet would be to find a hospital or clinic that specialise in Lyme's, and take it from there.
From what I've heard, the best ever is somewhere in California. I think you can sent your blood there. Certainly you can call them for any info.
try here:
http://www.canlyme.com/links.html

Risa

You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.

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susanasophia Nov-02-09, 06:17 AM (CMT)

8. "RE: Lyme"

thanks everyone for your feedback. i got my blood test results:
Lyme Disease Antibody:
0.04
Standard Range:
0.90- IV
What does that mean??
Did I test positive??
help!

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susanasophia Nov-02-09, 08:00 AM (CMT)

9. "RE: Lyme"

Ok, I found out that thats negative for Lyme. I just requested the Western Blot.
is that like the rorshach blot test, where if you see a "tick" in the ink blot, you have been infected?

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susanasophia Dec-07-09, 04:59 PM (CMT)

10. "RE: Lyme"

Got the test for Western Blot today. Just a blood test. Though the infectious disease doctor didnt think I had Lyme, based on my symptoms. We shall see. Just one more thing to cross off the list.

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thetsarisa Dec-08-09, 02:47 AM (CMT)

11. "RE: Lyme"

nevermind what the dr thinks.
Amy Tan drs didn't think so either, and with all the money she'd paid them and all.
in the end that's exactly what she ended up with, undiagnosed for years.

Do the test. and do it again.
The best would be if you could find out where in CA is that best lab for Lyme's testing, and ask them what to do.
Risa
You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.

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30yrsofheadache Dec-08-09, 05:31 AM (CMT)

12. "Lyme testing"

I had 4 testa before my Western Blot was positive. The Lyme was so buried so deep in tissues theat my body stopped making antibodies for it. I had to do an anrtibiotic challenge to get a response.
I am still suffering the long term effects after 4 years of antibiotics. A good place to read is Lymenet.org. If you have had a tick bite with a rash-you have Lyme disease. I would seek out a Lyme literate Dr. in your area if you think its possible that you have it.
The longer it stays untreated, the more damage it does. I was almost bedridden and thought I was dying. I am now functioning at about 60-70% of normal. I hope you dont have it, but you need to make sure.
Hugs.
Cindy

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susanasophia Dec-08-09, 07:19 AM (CMT)

13. "RE: Lyme testing"

I told the doc all my symptoms and he didnt seem to think Lyme was an option.
but i made him do the western blot, even though he didnt think i needed it.
I never got a bullseye, to my knowledge.
My headache started one day in the woods in NH and the doc said the headache would take at least 48 hours to set it, IF i was infected.
I think my PCP thinks im crazy, pursuing docs for this.
And I dont think she'd refer me to another Lyme doc if the Western Blot comes back negative..

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thetsarisa Dec-09-09, 01:49 AM (CMT)

14. "RE: Lyme testing"

Not everyone gets the bullseye. Not everyone is bitten by a tick, one may get bitten by a nymph and thus not even know was bitten by one.

as for the drs read what Amy Tan has wrote here:
While her doctors quickly ruled out either those possibilities, they could not tell her what was wrong, even after two CAT scans, an MRI and a 48-hour hospitalized fast.
She broached the possibility of Lyme disease, but her doctor "told me three times he really didn't think I had Lyme, that we didn't have it in California, and that it was rare."
http://www.canlyme.com/amy.html

I found this interesting site - it has tons of info:
http://www.lymenet.org/SupportGroups/UnitedStates/
Risa
You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.

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Rachel328	Oct-30-09, 09:59 AM (CMT)
1. "RE: Lyme"
Bloodwork is enough. I was tested for it, too. My results were negative.
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	susanasophia	Oct-30-09, 10:21 AM (CMT)
	2. "RE: Lyme"
	Thank you Rachel. I appreciate your note. I hope youre feeling well today. Love, Susan
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	dcook60	Oct-30-09, 10:56 AM (CMT)
	3. "RE: Lyme"
	if you go to any lyme organization or patient-advocacy web group, you will find that blood tests for this are notoriously NOT accurate. lyme is diagnosed with symptomology. very seldom are the antibody tests worth their salt. they can be useful, usually, only after a very recent exposure. the lyme bacterium, borrelia burgdorferi, is very good at hiding in the tissues. before you get all convinced that you have this nasty disease, it helps a lot to read a lot about it. i'm sorry that i no longer know the current sites, but you can easily find them online. lyme has been found in every state, but most doctors think it is an unlikely, and even controversial, diagnosis. i had the diagnosis, and treatment, 12 years ago. i did not improve, and that's mostly because it was many years between exposure and treatment. i have no idea if the bacterium is still active in my body. surely, if you've had a red, circular (bullseye, in some cases) rash, you should be tested asap. dianne
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	thetsarisa	Nov-01-09, 02:27 PM (CMT)
	4. "RE: Lyme"
	Bloodwork is NOT enough, especially when you got Elise test. Western Blot would be much better but even that is not sure test to detremine whether or not your test is accurate. Lyme's is extremely difficult to test- diagnose, and it would be best if went to Lyme's dr and lab to get tested. read here: Important: False negative test results have been widely reported in both early and late disease. http://www.canlyme.com/diagnosis.html Risa ps learn also about Lyme's on Amy Tan site: http://www.amytan.net/ You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	mgb	Nov-01-09, 03:56 PM (CMT)
	5. "RE: Lyme"
	one test is not enough. risa is absolutely correct. it takes serial testing, western blot is better. even then, if you had it long ago it's done it's damage. inflammation levels may be up from, so docs can measure that.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	susanasophia	Nov-01-09, 07:30 PM (CMT)
	6. "RE: Lyme"
	thank you guys. should i go see an "infectious disease" doc? would that be "specialty" enough? how is it my PCP thinks a simple blood test is enough to diagnose me? its like pulling teeth to get her to get more than a simple blood test done.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	thetsarisa	Nov-02-09, 02:13 AM (CMT)
	7. "RE: Lyme"
	""how is it my PCP thinks a simple blood test is enough to diagnose me?"" Unfortunately, majority of MDs are seriously, outrageously underinformed and undereducated on the subject of Lyme's disease. Is as bad here in Canada: http://www.cbc.ca/canada/british-columbia/story/2008/02/25/bc-lymedisease.html My best bet would be to find a hospital or clinic that specialise in Lyme's, and take it from there. From what I've heard, the best ever is somewhere in California. I think you can sent your blood there. Certainly you can call them for any info. try here: http://www.canlyme.com/links.html Risa You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	susanasophia	Nov-02-09, 06:17 AM (CMT)
	8. "RE: Lyme"
	thanks everyone for your feedback. i got my blood test results: Lyme Disease Antibody: 0.04 Standard Range: 0.90- IV What does that mean?? Did I test positive?? help!
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	susanasophia	Nov-02-09, 08:00 AM (CMT)
	9. "RE: Lyme"
	Ok, I found out that thats negative for Lyme. I just requested the Western Blot. is that like the rorshach blot test, where if you see a "tick" in the ink blot, you have been infected?
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	susanasophia	Dec-07-09, 04:59 PM (CMT)
	10. "RE: Lyme"
	Got the test for Western Blot today. Just a blood test. Though the infectious disease doctor didnt think I had Lyme, based on my symptoms. We shall see. Just one more thing to cross off the list.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	thetsarisa	Dec-08-09, 02:47 AM (CMT)
	11. "RE: Lyme"
	nevermind what the dr thinks. Amy Tan drs didn't think so either, and with all the money she'd paid them and all. in the end that's exactly what she ended up with, undiagnosed for years. Do the test. and do it again. The best would be if you could find out where in CA is that best lab for Lyme's testing, and ask them what to do. Risa You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top

30yrsofheadache	Dec-08-09, 05:31 AM (CMT)
12. "Lyme testing"
I had 4 testa before my Western Blot was positive. The Lyme was so buried so deep in tissues theat my body stopped making antibodies for it. I had to do an anrtibiotic challenge to get a response. I am still suffering the long term effects after 4 years of antibiotics. A good place to read is Lymenet.org. If you have had a tick bite with a rash-you have Lyme disease. I would seek out a Lyme literate Dr. in your area if you think its possible that you have it. The longer it stays untreated, the more damage it does. I was almost bedridden and thought I was dying. I am now functioning at about 60-70% of normal. I hope you dont have it, but you need to make sure. Hugs. Cindy
Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	susanasophia	Dec-08-09, 07:19 AM (CMT)
	13. "RE: Lyme testing"
	I told the doc all my symptoms and he didnt seem to think Lyme was an option. but i made him do the western blot, even though he didnt think i needed it. I never got a bullseye, to my knowledge. My headache started one day in the woods in NH and the doc said the headache would take at least 48 hours to set it, IF i was infected. I think my PCP thinks im crazy, pursuing docs for this. And I dont think she'd refer me to another Lyme doc if the Western Blot comes back negative..
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top


	thetsarisa	Dec-09-09, 01:49 AM (CMT)
	14. "RE: Lyme testing"
	Not everyone gets the bullseye. Not everyone is bitten by a tick, one may get bitten by a nymph and thus not even know was bitten by one. as for the drs read what Amy Tan has wrote here: While her doctors quickly ruled out either those possibilities, they could not tell her what was wrong, even after two CAT scans, an MRI and a 48-hour hospitalized fast. She broached the possibility of Lyme disease, but her doctor "told me three times he really didn't think I had Lyme, that we didn't have it in California, and that it was rare." http://www.canlyme.com/amy.html I found this interesting site - it has tons of info: http://www.lymenet.org/SupportGroups/UnitedStates/ Risa You re getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
	Remove \| Alert	Edit \| Reply \| Reply With Quote \| Top

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