posted
Re Lyme testing - there might not be any spirochetes in the sample. I've read that spinal taps are positive only 13% of the time, when someone actually has Lyme. Better to do a good bloodtest for all of it.
Posts: 13171 | From San Francisco | Registered: May 2006
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bcb1200
Frequent Contributor (1K+ posts)
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posted
Dr. B's guidelines, page 8:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children."
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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scorpiogirl
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posted
Sounds about right... my Lyme didn't show up in my spinal tap either. My test was perfectly normal!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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sutherngrl
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posted
Testing negative can also be a reason for insurance companies to refuse to pay for treatment. Good reason not to have a spinal tap.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Jane2904
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Member # 15917
posted
Our daughter's was negative. Tested positive on WB for Lyme 2 months before.
Hospital said the fluid was perfect. Ha!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Spirochetes rarely hang out in fluids. They love tissues, like your muscles, etc.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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scorpiogirl
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by sutherngrl: Testing negative can also be a reason for insurance companies to refuse to pay for treatment. Good reason not to have a spinal tap.
This is not necessarily true! Even with a POSITIVE test insurance companies can (and do) deny coverage!! My denial was based on the fact that they determined long term antibiotics use as "unproven" method of treatment. So in this case a positive test means nothing.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Ever go fishing and not catch anything??? You know there's fish there! Same deal.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
I still cannot understand how the NEW culture lyme test enthused about bby Dr. B can be that accurate either? Also like going fishing? j
-------------------- jeremy Posts: 71 | From new york city | Registered: Sep 2011
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t9im
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posted
Somewhere I read on the spinal tap the best odds are culturing the cyst form as that is what if most prevalent in the spinal fluid, not the spirochetes.
Unfortunately I don't think they culture the solution long enough to find spirochetes emerging from cysts.
I did read from Dr. Sapi's work (one of her research students) it can take over 3 weeks for a cyst to culture.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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quote:Originally posted by sutherngrl: Testing negative can also be a reason for insurance companies to refuse to pay for treatment. Good reason not to have a spinal tap.
This is not necessarily true! Even with a POSITIVE test insurance companies can (and do) deny coverage!! My denial was based on the fact that they determined long term antibiotics use as "unproven" method of treatment. So in this case a positive test means nothing.
- I believe her point was that if you come back negative on the tap, then your insurance has every reason NOT to pay for treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Of course an insurance company can look for reasons not to pay for treatment; but if you get a negative test result, they don't have to look very far. And since spinal taps usually come back negative, its best to stay away from them.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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