Early on in my medical maladies, I realized I needed to toughen up. Little did I know at the time, but I thought that my infertility treatments were going to be the worst I would ever see, apart from a myomectomy to remove a grapefruit-sized fibroid before trying to become pregnant. To put it mildly, I had to quickly get over my squeamishness around needles. Nothing like having to jam a 3-inch heavy-gauge needle filled with progesterone oil into your rump every night for nearly three months to get over that fear. It all seems so quaint now.

Speaking of needles…this past fall my number came up for a spinal tap, also called a lumbar puncture or “LP”. It is quite remarkable I have never had one done, given how many medical tests I have had over the past 20 years since my health started going awry. I didn’t exactly think it was going to be fun, but given that I am TOUGH AS NAILS I didn’t give it much more thought.

Apparently, I miscalculated on this one. Despite having a chatty technician who put me at ease, I quickly realized the error of my nonchalance when that big needle punctured my dura, the sheath that encases the brain and spinal cord. Apparently, it is fairly common to feel some tingling and shooting pains down the legs when the procedure begins. That part was unpleasant, but it was easy compared to the rest of it.

The hardest part of the procedure was the realization that they needed to pull at least 16 ccs of cerebral spinal fluid (CSF) from my central nervous system. With a spinal tap, it is drip…drip…drip until the vials are filled. The rate at which this happens depends on a few things, with spinal fluid pressure (which can vary hugely among people) being the most obvious. But there are apparently procedural aspects that can slow things down as well. They pulled 21 ccs in the end.

Spinal fluid collection during a spinal tap. Drip, drip, drip.

When the first of four vials took what seemed like an interminable amount of time (probably only 10 minutes), I suddenly became claustrophobic when I did the math – 30 more minutes like this?!? Being stuck in an uncomfortable position unable to move or fidget because you have a ginormous needle stuck into your spine is oddly anxiety-provoking. I’ll take a dark cave or MRI tube any day. Well, with a Xanax, that is.

Recovery after a spinal tap

The vast majority of people who get a spinal tap recover within 24 hours, or sooner. Patients are told to hydrate well to rebuild their cerebral spinal fluid, drink caffeine, lie flat, and not strain in any way. A little bit of a headache is to be expected but it can largely be avoided if you follow these precautions.

That is unless you spring a leak. When I asked about the spinal fluid leak rate at the imaging center where I had my spinal tap done they said, “What leaks? We never have leaks. It would be impossible for a leak to happen with the needles we use. They are tiny.”

You call these tiny?!?!

In the recovery room, it was very clear to me that I was in trouble. Already, I had a headache worse than any of my migraines. Still, I was told there was no way I had a leak because of the tiny needles they use and to go home, hydrate and lie flat.

Me looking entirely too confident before the procedure. The very first question the doctor should have asked me after seeing me sitting like a pretzel was, “Do you have EDS?” Notice the odd angle of my elbows, my wrists, and double-crossed legs (not shown) – very visual cues of Ehlers Danlos Syndrome, hypermobile type (hEDS). People with EDS have a higher risk for spinal fluid leaks.
Me, moments after the procedure, already feeling leveled by the pain. Little did I know what was in store for me in the days ahead.

Things turn south

Two days later I was puking my brains out from the immense head pain and was really dehydrated. Each time I got up my head pain became more belligerent, so I resorted to a bedpan to avoid sitting upright on the toilet. The pain was just as excruciating while lying flat. Nothing I took would touch it. Later that evening, my husband took me to the ER to get a blood patch, the accepted standard of care for a spinal fluid leak.

The ER is sadly the place one must go to get patched up, a job done by anesthesiologists because they have the most experience going into spines with needles. All I remember about that delirious night was promptly vomiting upon arriving. They quickly got me hooked up to some saline and morphine, which helped to stabilize me, but the pain was still unbearable.

By the time the anesthesiologist arrived, I was still a wreck and was experiencing massive head pain and a strange chest wall pain that developed about a day after the spinal tap. At times the chest wall pain, which is not a symptom of a spinal fluid leak, rivaled the head pain. This confused the picture and I was sent me home and told to come back in two days when I was more stable.

It took another four days before I was able to return. I kept waiting for improvement, and saw some false glimmers along the way, thanks to the Norco, benzos, acetaminophen, and ibuprofen that kept me in a twilight state. The matter was finally forced at 3:00 pm on the Tuesday before Thanksgiving. This was the appointed hour for my family to travel to Sonoma County for the holiday. I had been in denial, hoping I might be able to go. I finally sent my husband and son off, while my dear friend Dar came and took me to the ER.

This time I was far more stable but was told there would be no anesthesiologist (?) and that I needed to go home and come back the next day, the day before Thanksgiving when there certainly would be no anesthesiologist!

The Blood Patch

This is where things turned very strange, indeed. By some stroke of luck, our friend who we arranged to watch the dogs while we were away for Thanksgiving, and who is a hair stylist and knows just about everyone in town, called her anesthesiologist friend and told him about the absurd situation I was in. For once, I was in the ER for a very straightforward medical procedure. But no one would do it!

“Because your dura maters” (pun intended and borrowed from the Spinal Leak Foundation); the dura mater is shown in grey.

Just like that, within 20 minutes an anesthesiologist arrived to patch me up (thanks to the anesthesiologist friend making a call on my behalf?). When the anesthesiologist came in and heard that I had Ehlers Danlos Syndrome (hEDS type), he nearly didn’t do the procedure, rattling off a list of risks that were enough to give me pause. The dura is the outermost layer covering the brain and spinal cord and is comprised entirely of connective tissue. EDS is a connective tissue disease and rightly so he was worried about what a ‘wet tap’ might do to my dura should that occur and whether I would coagulate properly. I finally convinced him all would be well and within 20 minutes the procedure was done.

I earned back my tough-as-nails badge that night. Basically, a blood patch involves simultaneously placing an epidural spinal tap, which avoids the dura if done properly, while also rapidly drawing 20 ccs of blood from a big vein deep in the arm. Both procedures are done simultaneously in a sterile field, all while sitting up. Being upright is the hardest thing for a person with a spinal fluid leak because the CSF leaks out more and worsens the “raisin brain” and brainstem compression and all the fun that goes with that, like tachycardia and high blood pressure. Let alone the thought of someone going into my back again with another gigantic needle.

The blood patch procedure. 20 ccs of blood is A LOT (a full syringe)! But this procedure was a breeze compared to the lumbar puncture.

Somehow, all three of us – me, the nurse, and the anesthesiologist – managed to work together to get it done. Within an hour of injecting 20 ccs of blood into my epidural space, I felt enormous relief in my symptoms and was headed home for a quiet Thanksgiving with my dogs for frozen steak and ale pies from Trader Joes (they approved). It was exactly what I needed.

tough as nails

It took about a month to recover from that whole ordeal. Without hyperbole, I can say this is the sickest I have ever been, rivaling a six-week long bout of pneumonia I had in 2015.

Why put yourself through a spinal tap when you have ME/CFS?

There are a bunch of good reasons:

  • Ruling other conditions out (or in): As a neuroinflammatory disease, a spinal tap is a pretty important part of the differential diagnosis for ME/CFS, especially for ruling out conditions like multiple sclerosis. The types of proteins found in spinal fluid can also be helpful when ruling out overlapping conditions. Glucose, lactate levels, and white cell count are also measured and can help tease apart different conditions in the central nervous system.
  • Infections: A spinal tap is also important for determining if there are any infections in the central nervous system. I have an active Epstein Barr (EBV) infection in my peripheral blood (as determined by PCR testing), which made it necessary to see if my 20-yr EBV infection had crossed the blood-brain barrier and penetrated my central nervous system. This is a rare finding in ME/CFS. This alone justified the procedure in my mind.
  • Spinal fluid pressure: Spinal fluid pressure measured upon opening the tap (also called opening pressure), which if high or low, could indicate a pseudotumor (build-up of spinal fluid pressure in the brain) or a spinal leak (low pressure), respectively.
  • Research: Researchers need spinal fluid to better understand this disease.

In other words, it is one of those tests for which you hope NOTHING turns up because if it does, it is not good. Infections in the central nervous system often require a different treatment approach as many antimicrobials do not cross the blood-brain barrier. Spinal leaks or pseudotumors, while somewhat actionable, often have poor outcomes and take a long time to resolve with drugs and more procedures, like placing shunts to drain spinal fluid or getting blood patches to keep spinal fluid in. While having ME/CFS is no fun, I would not want to have MS.

What is in the cerebral spinal fluid of ME/CFS patients?

Cerebral spinal fluid (CSF) is a hot commodity in ME/CFS research because many of the leading physicians and researchers believe it holds important clues to this illness, yet samples are hard to come by because the test is so invasive (!). Thanks to Dr. Daniel Peterson of Incline Village fame, there is a bank of CSF samples dating back over 30 years. Dr. Peterson and his team at Simmaron Research joined up with researchers from Columbia University’s Center for Infection and Immunity (Ian Lipkin and Mady Hornig) and Konnie Knox at Coppe Labs to compare the spinal fluid found in ME/CFS patients with MS patients and healthy controls.

Strikingly, their paper showed that people with ME/CFS and MS – two inflammatory conditions – have reduced cytokines in the spinal fluid compared to controls, but with significant differences in the cytokine patterns found between MS and ME/CFS. Cytokines are messenger molecules that allow immune cells to communicate and control their responses.

The results from the Columbia study suggest that people with MS and ME/CFS are experiencing “immune exhaustion”, or depletion of cytokines. This finding is in agreement with other studies looking at cytokines in the peripheral blood, whereby at some point in the illness the immune system seems to poop out. In another earlier study by Natelson and colleagues, cytokine patterns depended on whether abnormal protein and glucose levels were also found in spinal fluid. However, protein and glucose levels were not consistently elevated in ME/CFS as a whole (only in a subset).

Some chemokines, on the other hand, were elevated in both ME/CFS and MS but not in the control group. Chemokines – short for chemoattractive cytokines – are small cytokines that also serve as go-betweens among immune cells. The name comes from their ability to use chemotaxis in nearby cells, essentially helping to “fetch” immune cells, such as natural killer (NK) and T cells, and draw them to parts of the body where they are needed. As such, chemokines control entry of immune cells into the brain by increasing its permeability. They are produced largely by activated microglial cells, a cell type getting a lot of press thanks to Jared Younger’s recent brain imaging studies.

Elevated chemokines suggest some kind of allergic reaction is occurring in the brains of people with ME/CFS and MS. Two chemokines were elevated ME/CFS and MS – CCL11 and CXCL10. CCL11, also called eotaxin, is a chemokine involved in the recruitment of eosinophils, a white blood cell type that is involved in mounting an allergic response, likely in response to infection in the brain. CXCL10 also mediates immune responses through activating and recruiting T cells, eosinophils, monocytes, and NK cells, often in response to a viral infection. This may seem like a good thing, but when these compounds are found in excess they can contribute to immune-related demyelination and make people feel pretty yucky from brain fog.

fig1 chemokines
The central role of microglia in neuroinflammation and chemotaxis. From Ramesh et al. 2013
figure 2
Altered Il-1 pathway

Using network analysis, a sophisticated type of statistical analysis, the study found more evidence for an impaired allergic response. The analysis found that interleukin-1 (IL-1) signaling is impaired, with the usual correlations among the various cytokines in the Il-1 pathway being off in ME/CFS. Normally, Il-1ra (ra = receptor agonist) – a compound that decreases Il-1 activity – plays a role in downregulating the allergic response. Il-1ra typically binds to Il-1 receptors and tamps down the release of Il-1 alpha and Il-1 beta, two pro-inflammatory compounds. In ME/CFS and MS, Il-1ra does not affect Il-1 alpha and Il-1 beta, indicating a disruption in Il-1 signaling. The authors suggest that neuroimmune responses may be shifted toward allergic or Th2 (autoimmune) patterns in the CNS of individuals with ME/CFS.

Jared Younger also believes that some of the patterns he is seeing in his brain imaging data are due to infiltration of immune cells into the brain due to a leaky barrier.

The brain imaging studies tell a slightly different story than the lumbar puncture samples. Lactate and cell counts tend to be largely unremarkable in spinal fluid samples from ME/CFS patients. Using far less invasive techniques such as PET scans and MRSt (magnetic resonance spectroscopic thermometry), studies have found evidence for increased lactic acid and other metabolites in the brain, indicating oxidative stress.

Analysis of proteins in the CSF of people with ME/CFS has shown alterations in the complement cascade of the innate immune system, but this requires far more sophisticated methods than the usual commercial labs where our CSF samples are sent.

Drum roll…my results

After waiting four long months, I finally got (some of) my test results back from my spinal tap. I wish I could say that everything came back normal, as I had hoped. The most significant finding is that I have elevated myelin basic protein, which indicates neuroinflammation. You might be thinking, well duh, that makes sense for a neuroinflammatory condition like ME/CFS. Except for the fact that this is not a common finding in this disease, according to my doctor. Luckily, I had no oligoclonal bands, which allowed my doctor to rule out MS.

One interesting tidbit from the Natelson paper is that people with abnormal protein in the CSF also had elevated IL-10 (an anti-inflammatory cytokine), which I also have. So, perhaps I am in that subset.

I also have some amino acid deficiencies in my CSF, but my doctor assures me that very little is known about this, but at least we have a baseline. Before too long research will reveal it’s relevance to this disease.

The most frustrating part is that my doctor has to send out more of my spinal fluid out for additional pathogen testing (good thing they got 22 ccs!). Apparently, he is not convinced that the negative test I had at LabCorp is reliable (they are always negative), so off goes another sample to Viracor, a private testing lab with highly-sensitive PCR tests for detecting herpes viruses, especially HHV6 and 7, which thankfully came back negative for me.

My samples also got sent out to Ian Lipkin at Columbia for metabolomic and proteomic studies, so maybe I will get a chance to see how I fit in with the rest of the ME/CFS population that has been studied. I don’t know if or when I will see my specific results from that study.

My next steps

Once the Viracor results come back I can FINALLY get started on some antiviral treatment to deal with this 20-yr old infection. At issue is whether we need to find a drug that crosses the blood-brain barrier in case I have an infection in my central nervous system. Apparently, this is questionable with the antiviral Valcyte (valgancyclovir, not valacyclovir), despite it being listed as a drug with this capability. Let’s just keep everything crossed and hope for no central nervous system infections, which would allow me to get started on Vistide (cidofovir) (Foscarnet being the other choice). Otherwise, I will need to get into the business of experimental drugs that are largely untested, like brincidofovir. According to my doctor, that would require me lobbying my senators.

You might be thinking – how can this be? EBV is a known trigger for this illness, hasn’t this bridge been crossed before? According to my doctor, it is exceedingly rare for ME/CFS patients to have a positive PCR test. This still boggles my mind, but at least it makes me a more interesting patient in the eyes of my ME practitioners. Apparently, they discussed my case at the ME/CFS clinician’s meeting in Salt Lake City last week. I was pleased to hear that two of my doctors who were there are on the same page about treatment.

In addition to figuring out which IV antiviral I will need, we are forging ahead with trying to get intravenous gammaglobulins (IVIG). Hopefully, I will join the Ampligen trial at some point, but I will need at least a half year of IV antivirals before we begin these other therapies.

We have not discussed how to address my brain inflammation. Stay tuned for updates.

Lessons learned – how to survive a spinal tap

I sure hope I never have to have another spinal tap, but I am glad I had one done. If I do need another spinal tap, I will be sure to follow my own advice:

  • Tell your anesthesiologist if you have hEDS. This is one branch of medicine that actually knows a little about EDS because of all of the weird ways it interacts with their profession. People with hEDS are far more likely to have spinal fluid leaks after a lumbar puncture because the dura is made up of connective tissue, which is weakened in people with hEDS. Knowing this would allow patients to not second guess a spinal leak headache and wait six days as I did before getting a blood patch. Those were the longest six days ever. While not related to spinal taps, people with EDS may metabolize sedating medications faster and may need more anesthesia than the typical person. That happened to me one time but that is another fun story.
  • Hydrate as much as instructions allow you before the procedure.
  • Drink a large coffee immediately after the procedure – even if you don’t drink coffee (I don’t). Coke is even more brilliant, due to the sugar.
  • Drink a massive amount of water after the procedure. Keep drinking. Use a bedpan if needed!
  • Don’t hesitate to go to the ER if you have a really bad headache after a spinal tap. Don’t do the dumb ME/CFS thing and refuse to go to the ER because you believe no one can help because ER doctors never do – they can in this instance! There is nothing controversial about a spinal fluid leak and all doctors know that. Just don’t expect them to solve your ME/CFS – the ER is NOT the place for that.
  • Bring along a strong advocate who understands a little bit of medicine and what your specific needs are.

In conclusion, there are a whole bunch of reasons for why getting a spinal tap done is a good idea, especially to rule out infections in the central nervous system and other neurological diseases. Research indicates that there are several immune abnormalities in the brains of people with ME/CFS. While most people don’t have access to the testing being done in research settings, hopefully before too long these tests will become more available and therapies will be developed to address the types of neuroinflammation that are being discovered in this disease. Hopefully, there will be less invasive ways than a spinal tap for getting at this information.

My intention here is NOT to scare anyone away from a spinal tap. If you need one, you need one. My hope is that in writing this blog people can approach it from a very pragmatic perspective and mitigate risks using the hindsight I gained.

this is spinal tap
Yes, Nigel, these spinal tap headaches really do go to 11.

10 thoughts on “Tapped

  1. Thanks for sharing! My headache doc asked if I had had my CSF checked. I haven’t. I was once asked if I’d give CSF for a study…and I’ve done poo and saliva & lots for studies (oh the survey hell lol…that’s the worst) but THAT (spinal tap) I’m not willing to do w/out results. I also don’t totally know how to go about it. Perhaps UCSF or Stanford infectious disease. Or CFCD. I know UCSF does Metagenomic testing (amazing tech) on CSF but last I checked, it’s only avail if you are hospitalized. And maybe $20k??…I think Dr. P threw out that #, but hopefully ins pays something. Either Lipkin people or UCSF cost. I believe Lipkin actually started at UCSF but they lost him for some reason. Anyway, when I do get it checked, I just want it to be worth it and check for ALL THE THINGS! Endocrinologist Mon, new local primary doc appt Tues (he has a ME patient so here’s hoping goes ok), travel wed, 1st Stanford Autonomic Clinic appt Thurs. I usually wouldn’t sched things so close but its just how it worked out and need primary ASAP bc ins paperwork. After all that, its on to finding a geneticist! Possibly the UCLA one. But watching the 2 most recent Chronically Jaquie YouTube vids made me more aware of the importance of who I see. One well versed on similar chronic illness situations…hopefully. Mayo FL geneticist missed some of her issues.


  2. You are very brave! I thought they were no big deal having had 4. Someone extremely special came along for the last one to advocate making all the difference in the world 😘Lizzie


      1. I think the smoothest part is having someone come along who actually understands what a serious and difficult procedure it is with the recovery protocol having to be exactly followed. I hope I can pay that forward eventually. 💗


    1. Hello! Thanks for reading my blog 🙂 I did indeed start an antiviral.

      Here is the update: It took a YEAR to get my spinal fluid tested for pathogens to my doctor’s satisfaction. Being PCR+ in peripheral blood made him obsess about a central nervous system infection. I was SO very relieved with this news because it would have been another year before I could have tried a non-FDA approved drug, which I was not keen on in the first place.

      As I type, I am dealing with the aftermath of today’s Vistide (cidofovir) infusion. I am on month 16 of fortnightly infusions, which involve three L of saline in addition to the drug, plus probenecid, which makes me feel nauseous. Not fun. After about six months, I went PCR- but my doctor wants to keep me on Vistide during COVID because if I get infected, I run the risk of letting EBV out of the bag again.

      I have seen some gains in the first half-year, but I made a big trip and seem to be back to square one. I saw this once before with Famvir and was warned by Jose Montoya to not go rushing back into my life when I started to feel better. Did I listen? Nope. I have made my peace because I am the World’s Worst Pacer, gold medalist material. Would I be better now had I heeded this advice? Who knows.

      I very much have an infectious disease mindset and believe that pathogens may play a bigger role in this disease than some researchers seem to think (more aligned with Ian Lipkin, Maureen Hansen, and Amy Proal). That said, I do not think antimicrobials are the answer … for me. There are many exciting ideas about infections and autoimmunity (well, as Proal and many others would say, is it really autoimmunity to react or cross-react to pathogen peptides?).

      Here is what I have settled on: I had an active EBV infection for 20 years. That cannot be good. My doctor has many patients who have or have had lymphoma. I now view my antiviral treatment as an anti-cancer treatment. I do it just because it is meant to be good, rather than how it makes me feel. It is getting old!

      I hope some of that helps and am always very happy to answer any question 🙂


  3. Hi Caroline – thank you for your answer! And your thoughts and research on your website 😉

    In my early teens, I already noticed that my metabolism around glucose and fats was off, and also energy consumption with exercise. Sleep disturbances were also in place. I recognize that, in 2020, as matching the energy production profile that is being found through the ME/CFS meat-a-bolomics research. Which means I had this problem already from childhood, maybe since I was born? How to know, my memory only goes back so far. Would one call it ME/CFS that early? I’m curious as to how the Australian team will select the children for its studies, how they will screen them for those with the metabolic component that don’t yet present with PEM (if they will) – which parameters will they look for?

    It was only at 37 that I got sick with EBV. To the untrained eye, it may seem that was when my health went downhill. Looking through my bloodwork (my records only go back as far as when I was 30), there was a sharp turn downhill at 32 – five years before EBV. I think that made me more susceptible to catching EBV in the first place – that same year, I had a different infectious disease every month and I don’t recall having any before. I had also managed to stay away from antibiotics up until then, and that same year, it was a boatload of them (one comes to appreciate their being when languishing from salmonella typhi… after the EBV).

    What it is about hEDS that shows up as ME/CFS… Everyone is my hEDS family has the glucose problem…


  4. Caroline – do you notice if you smell more ammonia exuding from your body with the ketogenic approach? It can present with intracranial hypertension and an intense headache like your eyes are going to pop out (not a CFS leak from a puncture). I drifted into a higher protein, less carb diet many years ago, and the smell of ammonia got worse. I upped carb intake and that took care of it more or less… until it no longer did, as I got thicker into the CFS. Those headaches I started experiencing already in my late teens, and frequency increased together with severity of other symptoms.


    1. I have not noticed ammonia, but there was a time when I explore the idea that I might have an issue with ammonia clearance and considered a lower protein diet. I never got to the bottom of those investigations because it is hard to capture ammonia. After all, it is so transient (at least that was my understanding then!).

      Do you tie your headaches to diet? Sorry, the carb fix is no longer working. So hard when you figure something out only to see the benefits slip away. I did not know that high ammonia can present like IC hypertension. Mine waxes and wanes. Perhaps it has something to do with ammonia? I wish there were more straightforward ways of sorting this stuff out :/


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