Major Event Log

Last edited: 1/15/22

Here, I’ll be aiming to highlight the major disease events I’m experiencing, the meds I’m trying, and the procedures I’m undergoing. There’s also a private log with higher granularity and more private events, so clinical notes and more details may be available upon request!

See also: Bloodwork (all through summer 2020).

In reverse chronological order:

• January 2022 — LAB RESULTS: TBRF Borrelia IgG positive. Ehrlichia IgG positive, high titer. Parvovirus IgM positive.
• December 2021 — SYMPTOMS: Leg allodynia spreads to the muscles and skin on the front of the leg from the lower thigh down after another, very mild, PT regimen by Kjetil Larsen.
• October 2021 — SYMPTOMS: Foot pain reemerges, this time very plantar. Arch, but podiatrists say looks neuropathic.
• October 2021 — PROCEDURE: Electrocardiogram with analysis to check for pulmonary hypertension and mitral valve prolapse performed at Stanford. Unremarkable.
• September 2021 — TREATMENT: Acetazolamide (Diamox) trial to test hypothesis of increased CSF syndrome. Month-long. No effect.
• September 2021 — DIAGNOSIS: Ehlers-Danlos Syndrome, hypermobile type (hEDS), by Dr. Fraser Henderson, neurosurgeon specializing in rare diseases. After in-person examination. Beighton score 5–6/9, soft, mildly hyperextensible skin, striae, piezogenic papules of the heel, dental crowding, widespread musculoskeletal pain, including all limbs. Ruled out tethered cord.
• August 2021 — PROCEDURE: Injections of anesthetic (a lot) via caudally inserted catheter to bathe the nerve roots and discs at L4/L5 and L5/S1 levels, with a focus on the left. Numbed substantially. None to mild improvement for a few minutes on my left side. Mild weakness in legs. Increased pain on left as of 4 days post-op.
• July 2021 — SYMPTOMS: A lot of hand pain for weeks after carrying moderately heavy stuff for a couple days up and down many flights of stairs, cooking and cleaning.
• July 2021 — MEDICINE: Reducing pregabalin back to 2 x 150mg. A flare in my feet that began in September 2020 with a dose of psilocybin seems finally over.
• June 2021 — SYMPTOMS: Progression of pain towards my hips. After playing some easy soccer (with kids), dancing, and traveling over the course of a month, right around 2 weeks after the lysis of adhesions procedure.
• June 2021 — PROCEDURE: Caudal and transforaminal lysis of epidural adhesions with hyaluronidase, Kenalog, and hypertonic saline. No improvement in pain.
• May 2021 — PROCEDURE: Local blocks with lidocaine in dorsal nerve of penis (20ml) and bilaterally in perineal branch of pudendal nerve. Numbness, but no improvement in pain.
• May 2021 — PROCEDURE: Ganglion impar block and bilateral superior hypogastric block (5cc of bipuvicaine at each of the 3 injection sites). No improvement in pain. Weakness in hip flexors, tenderness at hip attachments when engaging the muscles. Later developed more right sided pain seemingly at the spot where the long needle was CT guided across my right buttock for the ganglion of impar.
• April 2021 — PROCEDURE: Transforaminal epidural steroid injections at L4/5 and L5/S1, each on the right, lidocaine and dexamethasone. No effect the day of, not even numbness or weakness.
• April 2021 — PROCEDURE: Quantitative sensory testing of genitals, sacral foot and dermatome testing, bulbocavernosus reflex latency testing: All abnormal, by Dr. Goldstein at San Diego Sexual Medicine.
• March 2021 — SYMPTOMS: Prior neck pain returns, is now specifically triggered with even mild neck flexion, and radiates down the arms, especially the left, but also the teeth. Possibly related to trying to take LDN, resolved with the next spinal steroid injection.
• March 2021 — PROCEDURE: MRI Lumbar Spine and Pelvis. The L5-S1 annular tear has grown: It is now read as, “broad, right, eccentric, obvious.” A possible L4-L5 annular tear.
• February 2021 — SYMPTOMS: Allodynia and hyperglesia progress to knees. The triggers might have been: 1. deadlifts, squats, and mostly a DCT for Pelvic Pain exercise called “monkey pose” with a lot of stress on the knees. 2. neurotransmitter interactions after the routine removal of my two remaining wisdom teeth. And/or 3. daily infrared sauna sessions.
• September 2020 — SYMPTOMS: Allodynia in feet is back. Increase in pregabalin to 200mg 2x/day helps. This possibly inevitable progression appeared to be caused by bad sleep on a rare trip (terrible bed at Airbnb) or by psilocybin.
• August 2020-March 2021 (ongoing) — TREATMENT: Extensive physical therapy program with Dynamic Contraction Technique for Pelvic Pain. No pain improvement whatsoever.
• June 2020 — DIAGNOSIS: Joint hypermobility. Upon physical examination by a PT, am told I score 6/9 on the Beighton scale. The positive signs in the test: both pinkies and thumbs on both hands go too far back, and currently clarifying which 2 were the rest. Also stretchmarks at the hips joints, which are known via MRI to be excessively worn out, and also often hurt. Cervical traction tests seems to point to no CCI.
• May 2020 — LAB RESULTS: Low molybdenum. Supplementing.
• June 2020 — TREATMENT: Frequency-specific microcurrent about once a week. 2 months. No change.
• May 2020 — PROCEDURE: NeuroQuant brain MRI (plus MRI with contrast), Triage Brain Atrophy Report ordered. Conventional MRI read as normal, NeuroQuant chart has multiple oversized and undersized regions. I notice, as possibly relevant correlating with symptoms: the large white matter share (99th percentile), small cortical gray matter share (2nd), and the unbalanced parietal lobe (one section 99th percentile, the rest tiny).
• May 2020 — TREATMENT: Patricia Kane protocol: IV phosphatidylcholine 2–3x a week for 2 months. Strict keto diet and BodyBio supplements. No changes, but elevated my liver enzymes and caused me to sleep for hours after infusions. After removing the sodium phenylbutyrate component, the fatigue resolved.
• April 2020 — LAB RESULTS: IGeneX Lyme inconclusive. Positive on IgM, but not IgG. Combined with non-response to ceftriaxone, considered to be a false positive on IgM.
• March 2020 — TREATMENT: Ceftriaxone IV (Lyme challenge)
• March 2020 — LAB RESULTS: IGeneX Bartonella elizabethae positive.
• December 2019 — TREATMENT: Beginning DNRS.
• December 2019 — MEDICINE: Tried oral ketotifen, famotidine, and montelukast. No change.
• December 2019 — MEDICINE: Trying calcium bentonite clay, GI Detox by BioBotanical Research, cholestyramine. Various reactions, no results. On break since 3/2020.
• December 2019 — LAB RESULTS: Great Plains Lab Mycotoxins and Organic Acid Tests show “positive” results for Aspergillus, Penicillum, and Monascus metabolites, as well as a high mandelic acid in urine — a metabolite of styrene (plastic). My interpretation is this last part is fragments of my old, post-treatment, nighttime Invisalign retainer.
• December 2019 — LAB RESULTS: FM/a fibromyalgia test by EpicGenetics — negative.
• November 2019 — MEDICINE: Tried 500mg metformin for a month based on a recently published study. No results, discontinued.
• November 2019 — TREATMENT: Beginning a diet trial, prescribed by Dr. Daniel’s team: No dairy, gluten, corn, peanuts, soy, cane sugar, alcohol. Findings to be mentioned here upon conclusion.
• October 2019 — POTENTIAL DIAGNOSIS: Both Dr. Congdon and Dr. Daniel around this time independently mentioned mast cell activation syndrome. Dr. Daniel drew a few connections in my experience to histamines.
• October 2019 — DIAGNOSIS: Diagnosed with fibromyalgia by fibromyalgia specialist Dr. Melissa Congdon. She believes that Dr. Saint Amand’s “nodule mapping” test is the most sensitive and specific one available.
• September 2019 — SYMPTOMS: The allodynia spread to my feet and my arms and hands. Two weeks prior, this was preceded by about a week of poor sleep, including one night of only 2 hours of sleep. Then things got even worse when I made a second ill-advised attempt to use the LDN prescription.
• September 2019 — PROCEDURE: Injections of steroids into both of my ischial bursas. Dr. Poree UCSF Pain Management. This brought relief to my neck and shoulders, which lasted about 4–6 weeks. Did not help pelvic pain.
• September 2019 — PROCEDURE: MRI of cervical spine and MRI of thoracic spine. Nothing very notable. In thoracic spine, there’s an issue that doesn’t seem related to my symptoms. I think I remember this issue beginning with a mild basketball injury ca. 2013. Have only had minor localized pain there, very rare.
• September 2019—MEDICINE: Stopped finasteride 1mg/day.
• July 2019—SYMPTOMS: My neck and shoulders pain started creeping back up, despite me being on the same amitriptyline dose I’d been in for years. Less clear why exactly then, but probably brought on by a few weeks that has occasional nights of poor sleep.
• June 2019 — PROCEDURE: Injections of stem cell exosomes around tip of coccyx, pudendal nerve, and levator — all bilaterally. Dr. Jordan at Neurological Associates of West LA. As of October 2019, no discernible effect.
• June 2019 — PROCEDURE: Nerve block on posterior femoral cutaneous nerve and coccygeal nerve. Left side only. Dr. Jordan at Neurological Associates of West LA. There was proper numbing indicating a successful nerve block. Brief (4–6 hours), partial relief in pain, limited in area and magnitude.
• May 2019 — LAB RESULTS: IGeneX Lyme negative, but recommended retesting. Not yet redone (3/2020).
• March 2019 — SYMPTOMS: The allodynia spread to the back of my legs behind the knees. There was work anxiety followed up by a poorly managed attempt to get relief with low-dose naltrexone (LDN). Going up on it too quickly from 0 towards 4.5mg gives me, and many others, anxiety and terrible sleep, especially if taken at night like most practitioners prescribe.
• February 2019 — PROCEDURE: Pudendal nerve block. Bilaterally. Dr. Jordan at Neurological Associates of West LA. The doctor also injects at another spot in the levators from where he expects to get good coverage over more of the muscle. There was proper numbing in the distribution of the pudendal nerve: a successful nerve block. Brief (4–6 hours), partial relief in pain, limited in area and magnitude.
• November 2018 — PROCEDURE: MRI of lumbar spine. “Mild” degenerative changes throughout the discs and facet joints from L3 to S1, with the most notable findings at L5/S1, read as non-actionable at the time: Median extrusion of the nucleus pulposus of the disc in the L5-S1 segment, which causes mild central stenosis of the spinal canal. Bilateral mild compression of the median dural surfaces of the nerve roots at S1.
• 2018 — SYMPTOMS: Took diazepam regularly for a while and didn’t progress much since the fall of 2017 until the fall of 2018. The diazepam was prescribed as a muscle relaxant, even though we weren’t sure at the time whether muscle tone was a driving force at all compared to sensitization. Today, I believe that diazepam period stopped my progression at the time by suppressing any anxiety or ensuring consistently solid sleep. Dr. S. Daniel has suggested diazepam’s histamine inhibiting properties may have been what helped me during that time.
• Fall 2017 — MEDICINE: Started diazepam regularly 1–2x/day.
• Fall 2017–-MEDICINE: Started amitriptyline 30mg/night
• Fall 2017 — SYMPTOMS: Ear ringing began.
• Fall 2017 — DIAGNOSIS: Chronic pelvic pain syndrome by Dr. Jeannette Potts, urologist specializing in pelvic pain.
• March-August 2017 — TREATMENT: With rheumatologists, CPMC in San Francisco, Dr. David Curtis (now deceased), Dr. Molly Magnano, took prescription NSAID’s like indomethacin, which helped partially. Also tried Simponi, a biologic, based on suspected ankylosing spondylitis, or another auto-immune arthritis. Those diagnoses were thus ruled out.
• January-February 2017 — TREATMENT: Strictly followed an elimination diet by the schedule described in this book. No major discoveries. Minor discoveries: Chocolate and alcohol affect my IBS more than anything else.
• January 2017 — PROCEDURE: Colonoscopy with Dr. James Reed. 999 Hyde St. in San Francisco (office). Procedure I think at a St. Mary’s facility in SF. Saw the whole colon. Took biopsies in a couple spots. Nothing notable.
• March 2017 — SYMPTOMS: Developed neck and shoulder pain. Unclear why then. This pain is controlled well with prescription NSAID’s or steroid injections. Alternatively by taking 30mg amitriptyline nightly.
• December 2016 — SYMPTOMS: Developed IBS. Unclear why then. Since then, if not controlled, this leads to my rapidly losing weight.
• August 2016 — TREATMENT: Pelvic floor physical therapy at the Pelvic Health and Rehabilitation Center in San Francisco (Van Ness) with Rachel Gelman. 4 months. Later repeated another month in spring 2018. No effect after any one treatment session, or cumulative. Symptoms progressed posteriorly along the pudendal nerve following the first few sessions, all the way to the coccyx.
• July 2016 — SYMPTOMS: The pelvic pain got especially severe seemingly overnight in late July or early August. Spread throughout pelvis, including the levator ani, above my pubic bone, as well as to hip bursas in the months after. Allodynia in the original site in the perineal area. The apparent cause for this progression must have been mild work stress and possibly a night or two of problematic sleep — but certainly not a regular, endemic sleep quality problem. In the days just after the pain really got going, I was just working at a desk. It’s possible I spend a day the weekend before on a beach near Half Moon Bay. A few months earlier, in early spring, I’d been on a hike in New York and New Jersey. Don’t remember any infections, bites, or food issues.
• Around this time — APPOINTMENT: Saw PCP Dr. John Pierce. He was not too concerned about the pain.
• Ca. 2014–2015—SYMPTOMS: The pain increased in magnitude, became more permanent and triggered by small amounts of stress while sitting. Loud sounds began being perceived as painful. Also diffuse pain in the joints of the hands with typing at a computer. The causes were stress at work and in my family and personal affairs. Here, I’ll note that I’ve had a lifelong tic of kind of squeezing my fists when really focused or day dreaming. At the same times I probably subconsciously tighten my core and my pelvic muscles.
• Around this time—MEDICINE: started finasteride 1mg/day for hair.
• Ca. 2006, age 20—SYMPTOMS: Occasional pain that started in my penis and testicles. For many years would occur only while stressed and seated and thinking hard. This was probably muscle pressure or something I pulled while weight lifting in my freshman year of college. If it was muscle pressure, it might have been the levator ani itself or the inside of my adductors. Did not notice dominance of either side at the time.

Text update log:

• 10/17/21: Added events since visiting Dr. Henderson in DC, hEDS diagnosis and other.
• Ca. 09/21: Added events between May and August.
• 05/17/21: Added recent diagnostic nerve blocks and steroids.
• 03/20/21: Added recent lumbar MRI findings and new neck pain with flexion.
• 03/06/21: Added past 9 months’ worth of developments.
• 07/01/20: Edited hypermobility info.
• 06/19/20: Added molybdenum and hypermobility discoveries.
• 06/03/20: Added Lyme, Bartonella results, ceftriaxone, PK/PC protocol, NeuroQuant brain MRI, FSM.
• 04/15/20: Added recent Lyme and Bartonella exploration.
• 01/22/20: Added failed experimental treatments for auto-immune conditions in 2017.
• 01/04/20: Added developments. Cleaned up summary.
• 10/23/19: Simplified title.
• 12/19/20: Added bloodwork.