About to get my CSF test — what should we look for?

Hoosierfans

Senior Member
Messages
263
Likes
647
Hey geniuses!

I currently am seeing an internist who is managing my case alongside my autonomic neurologist. After years of not getting anywhere, we took a step back this fall and did a lot of “40,000 foot view testing” — thyroid, repeat MRI, full blood counts, neuropathy antibody testing, an OAT and NutraEval.

What is left on the list is a lumbar puncture, which I get never had. Since they are “going in”, I want to make sure they run whatever tests might be helpful. The original purpose of the test was to look at my neurotransmitter levels, but if there are antibodies and certain infections they should be looking for, I would like to get a list together to discuss with them.

Suggestions? Many thanks!!!
 

Wishful

Senior Member
Messages
4,387
Likes
7,997
Location
Alberta
Unfortunately, ME's neurological markers are probably a lot more subtle than neurotransmitters, and possibly even short-ranged (limited to a relatively small volume of the brain). Furthermore, no one knows how to properly interpret CSF results in terms of ME. However, if they are taking a CSF sample, I suggest cytokine and kynurenine levels (particularly the neurotoxic ones).

Please let us know if the tests actually provide some useful data. I'm sure others are wondering whether CSF testing is worth trying.
 

Pyrrhus

Senior Member
Messages
3,847
Likes
11,527
Location
U.S., Earth
Two things they might look for:

1) opening pressure of CSF at puncture. When they insert the lumbar puncture, they might notice that there is some increased pressure in the CSF, which is a potential sign of inflammation or increased intracranial pressure.

2) Look for immune cells in the CSF. Normally, the CSF has few to no immune cells. If they find immune cells, it might be a potential sign of inflammation.

There are also lots of auto-antibodies and infections that could be tested for, but neurologists usually require a specific reason or symptom to justify such testing.
 
Messages
93
Likes
182
Location
The Netherlands
In overlap syndromes like Fibromyalgia they find elevated IL-8, nerve growth factor and substance P in the CSF. You could look at literature what they find in me/cfs. But I'm interested in those. If you have major depression you could test for CRH in the CSF. I believe Dr. J. Goldstein mentioned NGF and SP as well for ME/CFS in his latest book, not sure though I will have to look that up.
 

Hoosierfans

Senior Member
Messages
263
Likes
647
Two things they might look for:

1) opening pressure of CSF at puncture. When they insert the lumbar puncture, they might notice that there is some increased pressure in the CSF, which is a potential sign of inflammation or increased intracranial pressure.

2) Look for immune cells in the CSF. Normally, the CSF has few to no immune cells. If they find immune cells, it might be a potential sign of inflammation.

There are also lots of auto-antibodies and infections that could be tested for, but neurologists usually require a specific reason or symptom to justify such testing.
Thanks — so while I have CFS, fatigue is not my major driving factor. Instead, it’s intense nerve burning all over my body, significant cognitive issues, hypotension, fainting, extreme anxiety / akathesia, dizziness and feeling lightheaded with lots of head pressure.

That’s why, when we first started talking about doing this test, my neurologist wanted to look at my neurotransmitter levels.

Are there any specific infections we should be looking for? I’ve had the blood tests for EBV, HHV-6 and CMV and lyme and co, but no other tests. Would be good to rule out any bugs while they are in there!
 

Hoosierfans

Senior Member
Messages
263
Likes
647
In overlap syndromes like Fibromyalgia they find elevated IL-8, nerve growth factor and substance P in the CSF. You could look at literature what they find in me/cfs. But I'm interested in those. If you have major depression you could test for CRH in the CSF. I believe Dr. J. Goldstein mentioned NGF and SP as well for ME/CFS in his latest book, not sure though I will have to look that up.
Ok, so add a cytokines panel, nerve growth factor and substance P. What is CRH?

Thanks for the suggestions!
 
Messages
93
Likes
182
Location
The Netherlands
Ok, so add a cytokines panel, nerve growth factor and substance P. What is CRH?
https://en.m.wikipedia.org/wiki/Corticotropin-releasing_hormone

But I've only seen this in major depression disorder however it is able to trigger neuropeptides. The burning symptom could indicate neuropeptide involvement, I already gave you two NGF and SP. You could discuss the neuropeptide class of molecules with your doctor.

Edit: CRH is btw also elevated in anxiety. Not sure if it was in serum or in the CSF. I think Dr. Theoharides wrote a paper about this.
 

Hoosierfans

Senior Member
Messages
263
Likes
647
https://en.m.wikipedia.org/wiki/Corticotropin-releasing_hormone

But I've only seen this in major depression disorder however it is able to trigger neuropeptides. The burning symptom could indicate neuropeptide involvement, I already gave you two NGF and SP. You could discuss the neuropeptide class of molecules with your doctor.

Edit: CRH is btw also elevated in anxiety. Not sure if it was in serum or in the CSF. I think Dr. Theoharides wrote a paper about this.
Oooh thanks. Interesting read on CRH. Darn it if it doesn’t sound like me — constantly stuck in severe anxiety and fight or flight — that I can’t seem to break. I’ll see if my doc will test for it.

of course that begs the question, if CRH is too high what do you do about it? It looks like from the Wikipedia entry that there are two drugs out there that can block / act as antagonists, but neither has FDA approval. Still being studied. 😖. Wonder if there are other treatments for high CRH. 🤷🏻‍♀️