Just wondering if anyone has had or anyone has information on the typical findings of CSF in people with definite Neuroborreliosis?
Not specifically testing if the bacteria it self but other markers such as protein levels, WBC, RBC, Glucose ect ect ??
Posts: 17 | From Canada | Registered: May 2015
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Tincup
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Keebler
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posted
- Still, lumbar puncture / spinal tap is not - not - a good method to test for lyme. And it can be very expensive and create a severe headache for up to a couple weeks afterward for some, not to mention, inserting a needle INTO the spinal column is not fun & games.
But, mostly, it's just not a good test for lyme, so many failures.
As for other things that might be measured that you list above, still certainly not necessary to test this way. So many other ways are much simpler, safer, less pain and cheaper than invading the inside of your spinal column with a large needle.
And, still remember that any test is only as good as the lab running the test and how well the sample has been gathered and attended on way to shipping to that lab. So many just are not able to properly do a good job. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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with several strongly positive bands & a post further down saying you had a positive ELISA and some white matter lesions show on a MRI, etc.
Two replies for you explained that you have "several Lyme-specific bands there. Band 39 is VERY important."
Other replies explained more. Some led to the Western Blot explanation link. Very important to read that.
And, yet others, explained that the "MS" diagnosis - with tests and symptoms such as yours - is very likely lyme.
As to your question for today: You do NOT need a spinal tap / lumbar puncture.
The CSF test is NOT necessary. Not at all. You already have several bright red flashing red flags that point directly to lyme.
Best to stay away from any doctor who is not thoroughly lyme literate. Best to find an ILADS educated LLMD or an ILADS educated LL ND (naturopathic doctor).
Have you consulted the Canadian Lyme Disease Foundation? Their link:
Hi Keebler. I already had a LP procedure performed back in December 2014 as the MS diagnostic process and ultimately was the final straw for the neurologist to make a diagnosis of MS.
Luckily for me, my neuro performed the LP and he has roughly about 1000 of them under his belt. My experience with the procedure wasnt all that bad. A little discomfort during the procedure it self and that was about it. The wife and I were out for brunch 2 hours it was completed and I was back at work the following day and took 3 days away from the gym.
Unfortunately until i get an appointment with a LLMD I am trying to make the most with resources that I have. I would presume with an infection in the CNS such as Lyme their would be typical findings in the CFS. Not necessarily the anti bodies associated with the bacteria but rather the inflammation and the bodies specific response to the inflammation.
In conclusion i am trying to piece together as much information as possible, not only for my own knowledge, but also so i can present it to an LLMD when that time comes.
Can Lyme has been a great resource, There are two LLND in my province that i am aware of. I spoke with one, based on my laboratory testing, in her opinion, she didnt think i had lyme. The other LLND is 6 hours away and wouldnt even glance over my chart until i made an appointment in person.
As always, thanks for your help!
Posts: 17 | From Canada | Registered: May 2015
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TF
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posted
After I got a positive lyme test from LabCorp I was sent to a neurologist who ordered a spinal tap for me. The tap was done in a hospital using an x-ray type machine for correct placement of the needle. This is a precautionary measure.
I saw the order for the tap. These are the tests he ordered on my spinal fluid: HIV, syphilis, and a few measurements like white blood cell count, protein, etc.
All of the tests came back normal.
I also was sent for a brain scan. That came back abnormal. I had 2 UBOs (unidentified bright objects) and the report said that lyme could not be ruled out.
So, please understand what happened there. I had lyme disease and had had it for at least 10 years. Yet, my spinal fluid was tested for various things and all was normal. At least, that is what I was told by the neurologist. I assume he did not lie.
My brain, however, was NOT normal. I went on from there to various lyme doctors and eventually was tested by Igenex for coinfections. I was positive for babesiosis and bartonella also.
My brain function was clearly affected by the disease, but my CFS was totally normal.
I believe that this is the typical result of a spinal tap on a lyme patient.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Was there an abnormalities on your MRI, if you ever had one?
I have several lesions. Therefore my CSF fluid has abnormalities. Such as; elevated levels of overall protein, elevated level of Albumin, elevates IGG and CSF IGG/ALB ratio was high sitting at 31%, increased WBC count, ologiclonal banding.
In ms patients moderate elevated levels of protein and WBC are found, amongst other things. However, my count is higher than what is typically found. Given i was having an "active relapse" at the time it could explain the elevated levels of these two, however, I can not find any literature for CSF analysis in MS patients who have had a LP during an active relapse.
Posts: 17 | From Canada | Registered: May 2015
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Keebler
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