A friend was just diagnosed with Neuro Lyme. She has headaches, vertigo but is not bad.... yet. She asked her doc (not an LLMD) for infusion ABX and the doc said she'd have to get a spinal tap for that. ?!?! Is that just the doc's way of scaring her out of it? Is it a necessary test for neuro Lyme?
I am trying to talk her into seeing an LLMD I know of but she's skeptical. AND no insurance which makes it harder. Any advice?
Posted by TF (Member # 14183) on :
I would urge her to refuse the spinal tap. It is not a necessary test, but I am not surprised that her doc is requiring it.
Let her know that lyme docs don't order this test. Neurologists and infectious disease docs order it so that they can declare that the patient does NOT have lyme disease.
Here is what Burrascano says about this test:
"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." (p. 8)
Since lyme rarely shows up in the spinal fluid, if she gets this test and it is negative, the doc can declare that she does NOT have lyme disease. They did that to me.
Notice when Burrascano says to do this test:
"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."
There are possible side effects of this test like a headache from hell (debilitating for days or longer) which you try to avoid by laying flat for the rest of the day after the test.
Others have had even worse complications. For example, spinal fluid can continue to leak out of the hole they made to draw out fluid. Then, you have terrible problems and have to go back in the hospital for a "blood patch" where they go in and seal up the leak with some of your blood.
The procedure itself is also rather frightening and has its share of pain. It consumes the entire day, and someone has to take you and bring you back from the test.
I will never allow them to do another one on me. And, by the way, it was negative for lyme--but of course I had lyme, babesiosis, and bartonella when my blood was tested by Igenex.
She may want to read up on the procedure on the internet to learn more about it.
Posted by bettyg (Member # 6147) on :
i completely agree with tf!! many have posted of their HORROR stories and those migraine headaches that last 1-2 WEEKS!! painful also.
Posted by groovy2 (Member # 6304) on :
Hi Cake--
I agree with the others--
I have seen about 20 people on LN get a ST and it did them Zero good and found nothing --Jay--
Posted by scupscake (Member # 18844) on :
Thank you!! I'm going to read all this to her. I'll give updates on my progress to get her treatment in progress!