jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
My daughter, who was diagnosed with lyme last spring, was treated with Amoxy for 14 days, now has some knee pain (and forgetfulness).
Took her to doctor last week for bloodwork. I thought they were doing the Western Blot but apparently since the Elisa was negative they did not. She had a positive Elisa back in the spring.
While I actually think it's only a slight chance she has recurring lyme symptoms, I wanted to rule it out so I didn't worry about her. Doctor had said it's Osgood Shlatter's. Sorry, but for some reason I just don't believe that.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I empathize.
Posts: 743 | From New York | Registered: Apr 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i don't understand "While I actually think it's only a slight chance she has recurring lyme symptoms"
i see you are relatively new---if you read on here awhile you will learn 2 weeks of abx for lyme is not enough and i would expect the result you got
its still the first year-but i think your best bet is to get to a good llmd asap so she has the best chance at recovery she can
my son had osgood shlatters...he was about 10 and the only one of my 4 not dx wih lyme. but first the doc dx him then xrays followed to confirm and then he was in full leg cast for months...
if the doc is not following up with xrays and cast it sounds to me like s/he is really just guessing at the OS
i would not let this waste time to get her on appropriate tx
theres lots of info on this site and many to help you-its hard for me to type so i won't answer much...but i think you need to hear this asap and no one else had said it yet
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
The ELISA is a very unreliable way to find out if someone has Lyme. Even Johns Hopkins knows that.
Get her treated until the knee pain goes away!! (and read what kayak had to say about this supposed Osgood's)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
thanks. I spoke to the doctors office this morning. They are going to give me the lab slip for the western blot.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- She does not need another test.
Most labs do the wrong western blots tests, so that's not a guarantee, anyway. IGENEX is the best lab ( www.igenex.com ).
Elisa is unreliable but since she first got a positive, that is a positive. The Elisa negatives are what fail, not the positives.
Once she had a positive lyme test, she never needs another one. Lyme does not go away. It can go in to remission and can flare again (and need treatment) but there is no cure.
As kayak says, she did not receive proper treatment before, so it is no surprise that it's back. Treatment should be at least 6 months, according to many LLMDs.
And coinfections need to be assessed, too.
I hope you can find an ILADS-educated Lyme Literate MD (LLMD). The current doctor does not know enough to treat. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
It is best to see a LLMD in person first for a physical exam, history and symptom assessment. Then the LLMD can guide you to the best tests.
Again, I do not think your daughter needs another lyme test. She was positive, not adequately treated and has classic symptoms. I would put the money toward a LLMD consult and then whatever tests are recommended AFTER her clinical evaluation. Bartonella is a likely coinfection.
From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Excerpts:
* * To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . .
`` . . . Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation. . . .
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . . ------
- Be sure to read the full article as it discusses the sharp differences between CDC / IDSA and ILADS' understanding of borrelia.
- Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
ILADS - International Lyme and Associated Diseases Society -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
My 30 yr old daughter was diagnosed with Osgood-Schlatter's when she a child.
Years later I figured out she has lyme and co.
Not saying that lyme or bart caused it for sure, but I wonder.
I remembered reading about it in the link Keebler provided above for the essay "When to Suspect Lyme".
About 2/3 of the way down the page, just after the advertisement that says "Change starts with a girl", you can read what Dr Bleiweiss says.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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quote:Originally posted by apljack: [QB] thanks. I spoke to the doctors office this morning. They are going to give me the lab slip for the western blot.
Hope it's for Igenex.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Just to reiterate: get her to the best LLMD you can find and afford ASAP. The dr you are seeing doesn't know enough to diagnose and treat her. Don't let it get worse!
Posts: 3771 | From around | Registered: Mar 2008
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posted
hm yea.. just to reiterate about the ELISA:
everyone and their grandmother knows the ELISA is absolute garbage... not only for lyme, but for so many other diseases/conditions...
false negatives for infections, false positives for certain conditions because of a separate medical condition, etc etc etc....
and yes, they DO TEACH THAT IN MEDICAL SCHOOL!
...and so again I come to my question of where exactly things go wrong???
they teach: 1-the ELISA is garbage 2-if you even SUSPECT lyme, TREAT before even getting test results... 3-CHRONIC Lyme...
...this stuff is in the medical licensing board review books too..
... so again I say... Where exactly do things go wrong???
...iiiiii dunno... i suppose i'll keep you guys updated if i ever so find the answer....
apljack, go with your gut. if you're not satisfied, see someone with a mind that's not so closed.... I was seeing doctors since I was about 7 years old... it took until i was almsot 23 to find a doctor who had the right heart.
good luck
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
So now my daughter is sooo tired. Yikes, this I do not like.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
My family is proof of two things...
1. Lyme testing is NOT accurate!
I removed a tick from my back, had a bull's eye, and symptoms started 3 days later. I know what I have.
I've been tested 3 times for lyme (western blot) and coinfections and I've never tested positive for anything. Ever.
I have Lyme, Bartonella and Babesia, their symptoms and treatment results to prove it.
2. A short dose of antibiotics is not enough treatment and certainly won't treat coinfections.
My daughter had lyme in 2003, very ill, many bull's eyes, etc. She was given 2 weeks of amoxy and told she was cured.
Over the years she developed Bartonella streaks (google "Bartonella rash") and stretch marks and a severe case of stomach acid.
In 2008, at the age of 12, she was diagnosed with GERD and Barrett's esophagus (precancerous esophogeal cells).
Now she has major brain fog as well and my bright girl is struggling in school.
So that what my family has been thru will not be in vain, I am shouting from the rooftops to anyone who will listen,
PLEASE SEE AN ILADS TRAINED LLMD AND GET FURTHER TREATMENT!!! DO NOT WAIT!!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
17 hens--all I can say is "WOW". I will get her in ASAP. Thanks.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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