Utility of testing cerebrospinal fluid for pathogens, etc?

[maggie3]

Is there any use in getting a spinal tap to have spinal fluid tested to help determine root cause of illness. I have heard/read of different labs being able to test for things like Lyme, MS, glucose, protein, cell count, viruses, bacteria, fungus, parasites, all in spinal fluid.

I have still be struggling to determine the root cause of my illness (hence all treatments I have tried thus far are really just a shot in the dark), and it would be great to identify something more concrete to address. A friend of mine mentioned having spinal fluid tested but I wanted to see if anyone has do that and had any luck in getting closer to the cause of their illness or even just knows more than I do about doing something like this.

Getting a spinal tap is no walk in the park, so is only something I would want to explore further if there is great utility in doing so.

 

[Dakota15]

I have had a spinal tap to measure opening pressure & wanted to have my fluid analyzed as well, but where I live (Minnesota), the doctors I've seen have said that I would have to be admitted to the hospital / ER to have my CSF fluid analyzed, so we could only measure pressure from an outpatient standpoint.

More or less I'm saying from my vantage point and experience CSF testing seems to be only done on emergency basis only (i.e. meningitis). I am definitely open to having a spinal tap with fluid analysis / tested and have sought this out myself, but it seems outside of Dr. Dan Peterson (who sees CFS/ME patients), CSF testing is only really done on a research basis (Dr. Ben Natelson being one) and not really on the clinician side....just my two cents.

 

[maggie3]

@Dakota15 hmm okay. Good to hear your experience. My friend was able to get one on a non-emergency basis. So I assume it seems to depend on your doctors. It is definitely something I am interested in doing, but like you, just need to figure out how to go about getting it done, i.e. seeing the right docs.

 

[Judee]

I'm not sure but I think someone a few years back did a thread about her visit to Dr Chia and I think she said he did a spinal tap as part of the work up. I don't remember any other details about what she said he was testing for though. Sorry.

 

[Dakota15]

I would agree @maggie3 . Can I ask if testing the fluid helped your friend's treatment plan?

 

[Dakota15]

Thanks for sharing @Judee. I did not know that Dr. Chia utilizes spinal taps as part of his testing and treatment modalities with patients.

 

[Judee]

He may not still be doing that so if you try to schedule with him, I would make sure he still does that if that is important to you.

 

[maggie3]

I would agree @maggie3 . Can I ask if testing the fluid helped your friend's treatment plan?

It was inconclusive (no findings of anything of use) , so no it did not directly affect a treatment plan. But it was useful in terms of ruling things out. Although I have heard stories of people finding weird stuff in their spinal fluid that did lead to a diagnosis/help with a treatment plan though.

 

[junkcrap50]

I am very interested as well. I've been considering the same thing. One r two me/cfs patients have tested negative for viruses by blood but positive by CSF and had success once finally on antivirals.

 

[maggie3]

I am very interested as well. I've been considering the same thing. One r two me/cfs patients have tested negative for viruses by blood but positive by CSF and had success once finally on antivirals.

That is great to hear! Ya, I believe my issue is virally (although cannot be positive) caused but have no idea what viruses(s) is causing the issues and I know that different antivirals target different viruses. I have been taking acyclovir but have no idea if its doing anything/actually targeting the right virus. So it seems to make a lot of sense to get CFS tested. Challenging part is getting the test ordered it.

 

[Wishful]

If you can get your CSF sampled, try to arrange for as many tests as possible, such as cytokines and chemokines, maybe nutrients, hormones, etc. Maybe something will really stand out as abnormal, and lead to a treatment.

 

[Hip]

I have still be struggling to determine the root cause of my illness (hence all treatments I have tried thus far are really just a shot in the dark), and it would be great to identify something more concrete to address.

Are you seeing an ME/CFS specialist doctor, or are you trying to do it yourself?

ME/CFS doctors approach viral testing in a different way to regular doctors or ID specialists, so you may get a negative viral test result from a regular doctor but a positive result from an ME/CFS doctor.

I'm not sure but I think someone a few years back did a thread about her visit to Dr Chia and I think she said he did a spinal tap as part of the work up. I don't remember any other details about what she said he was testing for though. Sorry.

I have not previously come across Dr Chia using a spinal tap, but I believe Dr Peterson uses it to test for herpesviruses.

 

[maggie3]

@Hip I have some upcoming apts with regular docs (I am fairly new to being ill, 1.5 years, so trying to cover all of my bases) and also made one with an me/cfs specialist in September. Ill be seeing Nathan Holladay in Utah, as he is the closest to me and has the shortest wait list of all the me/cfs specialists as far as I am concerned. Although I am not entirely sure what his approach to testing and treatment is.

 

[Hip]

@Hip I have some upcoming apts with regular docs (I am fairly new to being ill, 1.5 years, so trying to cover all of my bases) and also made one with an me/cfs specialist in September.

From the viral testing perspective, regular docs when they see chronically high IgG antibody levels in viral tests, they will usually ignore those, and say it is just from past infection. Whereas ME/CFS doctors will interpret those as evidence for ongoing infection, and may then prescribe antivirals.

 

[GlassHouse]

I was found to be positive for an active viral infection in my spinal fluid and that same virus was cultured from my stomach, small intestine, and colon years later. I’ve had active viral encephalitis and systemic infection with the same virus for almost 10 years.

My progression into serious illness happened after a high fever of unknown origin and then I developed an altered state of consciousness and multiple organ failures (around one per year as the virus infected different tissue, like my liver). I had POTS/EDS/MCAS/ immune dysfunction since I was a child but I didn’t have ME/CFS until after the brain infection when I was 21.

The test that found the HHV-7 was a new technology that does PCR for all known bacteria and viruses. Instead of testing one by one they tested everything at once.

Dr. Ian Lipkin has a test like this, and he’s also running my CSF, but my initial test was through the DeRisi Lab at UCSF who ran it for Dr Peterson. I paid $5k for the Lipkin test, which was a huge chunk of savings, and then DeRisi was for research and I think used grant money. I begged Dr Peterson to help me get this test.
If I recall correctly, the other patients who had the test run were not positive for anything and it was very unusual that I was PCR positive for HHV-7.

This year I took oral Valcyte for about a year and didn’t feel any different. I’m now going to be trying IV Vistide. Both Dr Peterson and Dr Kaufman want me to also be on IVIG but my insurance has refused over and over. The best scenario is that I have IV Vistide and IVIG at the same time to fight the virus and support my dysfunctional immune system.

It’s also possible that my symptoms can’t be treated if they’re due to permanent brain damage from having an active viral brain infection for almost 10 years.

I don’t think I’ll ever be able to let go of the anger I have toward the hundreds of regular doctors who didn’t help me, yelled at me, sent me to psych, and berated me for being attention seeking by trying to claim that I had something infecting my brain. I even sent them the results showing the encephalitis later and none of them apologized.

I saw a doctor during the initial encephalitis with a fever of 104 that lasted 6 days before breaking for even 5 minutes, and around 14 days total before going away. He told me to take more Tylenol. When I said I couldn’t stay awake and had extreme muscle weakness he told me those were normal flu symptoms.

Anyway sorry for ranting! If you want to try getting a similar test to the one I had, I’d try contacting the DeRisi Lab at UCSF (and you can DM me if you’d like). I know they are interested in ME/CFS patients and testing their spinal fluid.

 

[Dakota15]

Thanks for your insight @GlassHouse

If I'm understanding correctly, are you saying that the DeRisi Lab identified the HHV-7 infection from analyzing your spinal fluid? Can I ask how you convinced Dr. Peterson to utilize the DeRisi Lab?

I'm a patient of Dr. Chheda's and am considering asking if a spinal fluid assessment would be advantageous to complete (I would have to steer in this direction I assume)

 

[Hip]

The test that found the HHV-7 was a new technology that does PCR for all known bacteria and viruses. Instead of testing one by one they tested everything at once.

Your test (which I think would have been high-throughput sequencing, the test that Lipkin uses) may be touted to test for all viruses at once, but I am doubtful it would detect enterovirus infections in the brain via a CSF test, as Dr Chia says enterovirus is often not found in the cerebrospinal fluid, even when there is an acute enterovirus brain infection, let alone a chronic enterovirus infection of the brain (which is much more subdued than acute). See this quote from Dr Chia:

The common wisdom is that if you have a brain infection, you should find it in the cerebrospinal fluid; that's clearly not true: even in acute infection of enterovirus 71 infections, only 5% of the CSF samples are positive. So it's not in 95%, in the acute setting; and this [ME/CFS] is chronic.

— State of Knowledge Workshop Day 1, Part 2, timecode 9:33

If you test brain tissue for enterovirus (not possible except in post-mortem), then you might get a positive result from high-throughput sequencing. This is what Prof Lipkin told me by email: he told me that his high-throughput sequencing would not detect chronic enterovirus infection via a blood sample, it can only detect it if you use a sample of the actual infected tissue.

Prof Lipkin does not believe enterovirus can cause ME/CFS, so he has no interest in this virus. It's Dr John Chia who is the enterovirus ME/CFS expert.

Where you tested by Dr Chia at ARUP Lab for high coxsackievirus B and echovirus antibodies?

This year I took oral Valcyte for about a year and didn’t feel any different. I’m now going to be trying IV Vistide.

If your issue was chronic active HHV-7, then Valcyte may be ineffective against this virus. See this thread.

I’ve had active viral encephalitis and systemic infection with the same virus for almost 10 years.

Was this 10 year encephalitis diagnosed by a doctor? Were you repeatedly tested for HHV-7 in the CSF over many years, and were always positive?

I developed an altered state of consciousness and multiple organ failures (around one per year as the virus infected different tissue, like my liver)

Were these organ failures also diagnosed by a doctor?

I saw a doctor during the initial encephalitis with a fever of 104 that lasted 6 days before breaking for even 5 minutes, and around 14 days total before going away.

During the acute infection phase, enterovirus can often cause fevers lasting two or even three weeks. See this enterovirus MEpedia article for the acute symptoms of enterovirus:

prolonged fevers (102 to 104ºF) lasting 3 weeks

 

[junkcrap50]

Where you tested by Dr Chia at ARUP Lab for high coxsackievirus B and echovirus antibodies?

Would ARUP's micro-neutralization lab tests on enterovirus be able to detect it in CSF samples? What about tissue biospy samples? It can detect it in blood samples.

 

[Hip]

Would ARUP's micro-neutralization lab tests on enterovirus be able to detect it in CSF samples? What about tissue biospy samples? It can detect it in blood samples.

The ARUP Lab tests used by Dr Chia are antibody tests, using the very sensitive neutralization method of antibody detection, so they do not detect the virus directly, but indirectly by the immune response to it.

In enterovirus ME/CFS, the infection is found in the muscles, intestines and brain, and so with this amount of infection throughout the body, you get a detectable antibody response if you test the blood. I believe ARUP will also accept CSF samples.


If you want to detect enterovirus directly in ME/CFS, then you need a tissue sample, either muscle or (much easier) stomach tissue. Then you can use PCR testing or enterovirus VP1 protein testing on the sample. If you send a stomach tissue sample to Dr Chia's lab, he uses VP1 protein testing to detect enterovirus (cost is $250).

 

[Dakota15]

@Hip just curious, hypothetically, for patients who test positive or would test positive for enterovirus on a stomach tissue biopsy, would the treatment (to your knowledge) most likely still be Oxymatrine / Equilibrant?