State of the Brock, June 2020

Also see: Brock’s Clock: What This Site Is About.

Last updated: 07/06/20

Executive summary of my severe chronic pain condition, my best understanding at this point in time. Note that as of the time of writing this, symptoms and meds are changing on a daily basis.

I have muscle pain and sensitivity throughout my pelvis. Related to that in onset and patterns, I also have pain on the back of my knees, in my feet, in front of my elbows on the inside of my arms, in my hands, and in my neck and shoulders.

In a different pattern, I have pain throughout the joints of my wrists and hands.

I have unusually advanced osteoporosis in my hips, SI joint, neck, and possibly other sites.

4 years in, I’m still trying to paint a better picture of the etiology of my pain, although just recently I’ve started suspecting a hypermobile Ehlers-Danlos syndrome (hEDS) or a hypermobility spectrum disorder (HSD) as being a major component.

I have a significant degree in hypermobility, 6/9 on the Beighton scale, and striae around my hips. Also known mold exposure. Cervical traction tests for craniocervical instability appear negative. I have a history of autoimmune disease on my mother’s side, and my mom is also potentially hypermobile (under investigation).

Other diagnoses I’ve had or have:

• chronic pelvic pain (initially),
• fibromyalgia,
• mast-cell activation syndrome,
• mold toxicity,

An unidentified infection, perhaps Lyme disease or a coinfection, remains a possibility. The term “central nervous system sensitization” describes most of my issues symptomatically, with severe pain front and center.

Current goals:

• Learn as much as I can about hEDS/HSD, identify some top specialists (near or far), and try the latest known treatments for my pain.
• Find an alternative to regular diazepam as a mast cell stabilizer, long-term use of which is undesirable for multiple reasons (though none in my case being thetypical primary concern with it: addiction).
• Prevent any further progression.
• Reverse central sensitization.
• Improve diagnosis and clear further potential root contributors.
• Be able to sit, stand, walk, and drive comfortably — any of that longer than a few minutes, with minimal pain.

Current major treatments:

• IV ozone therapy
• Physical therapy
• Mycotoxin binding (cholestyramine, bentonite clay, activated charcoal)
• LENS — neurofeedback (starting soon)
• Trial of ketotifen and famotidine as mast-cell stabilizers

Current medications:

• amitriptyline — 30mg nightly, sometimes another 10mg during the day — seems to neuromodulate, helps me sleep well
• pregabalin — 150mg 2x / day. This seemed to help me with sensitization, although I’m currently reevaluating that conclusion.
• diazepam 5mg / baclofen 5mg into a single suppository — 2x/day. Helps a ton with sitting. Helps with pain all over. I believe it prevents my issues from progressing in magnitude or to yet new areas.
• cholestyramine — 1/16th — 1/8th teaspoon/day
• bentonite clay — 1/3rd teaspoon/day
• GI Detox (activated charcoal + more) — 2 caps/day
• magnesium citrate — 300–900mg/day — to counteract binders-induced constipation
• Trio of Bartonella herb tinctures by Woodland Essence: Baikal Skullcap, Houttuynia, Japanese Knotweed (Polygonum cuspaditum) — working towards “3 droppers of each” 2x/day
• vitamin D — 10–15 UI/day
• vitamin B12 solution — 10mg/day — general nervous system health.
• Thorne B-Complex #12–1 cap/day
• molybdenum — 0.5mg/day
• BodyBio phosphatidylcholine — 5200mg/day (on non-IV days)
• SPM Active (fish oil) — 6 softgels/day
• BodyBio Balance Oil a plant-based omega-6/omega-3 supplement — 2600mg/day
• Mirica by Young Nutraceuticals — 3 caps 2x/day

Details:

The pain is generally in my muscles, ligaments, bursas, fascia, and skin.

In my pelvis, the most affected areas are my genitals, perineal region, my pelvic ani muscles, my ischial bursas, my suprapubic area.

Of these sites, I have allodynia in my perineum and genitals, along the left levator ani muscle, on the back and the insides of the knees (in the fascia), on my feet, in front of my elbows, much of my upper back, and in my hands.

The neck, shoulders, and elbows respond well to oral NSAID’s and corticosteroid injections.

The pain in all these areas can be 7–8 / 10 in intensity, with the biggest issues today being the sensitivity in my pelvic area, my feet, and my hands.

The pain is left-side dominant.

The locations and distribution speak more to issues at the central nervous system level.

Sitting is almost impossible. An orthopedic cushion used to give me some relief by minimizing pressure on some of the hypersensitive area, but lately has been less useful. Without pregabalin: Standing (in one place) also near impossible. Walking can be very tough, and especially seems so in the mornings. Using a computer for any amount of time longer than 15 minutes is becoming really difficult, as is holding a phone.

In addition to spontaneous pain at rest and severe sensitivity to touch, at the allodynia sites, I get an inability to tolerate moderately warm or moderately cold temperatures, so wearing most types of underwear, socks, pants, and shoes is usually intensely painful, particularly without pregabalin.

All of the above is significantly improved, maybe 50%, on 5mg or more of diazepam 2x / day.

I also have:

• IBS (mostly diarrhea)
• ear ringing
• sensitivity to sudden loud sounds
• a scalp rash, aggravated by animal fats, in particular red meat
• some kind of soy-related allergy: under investigation.

All these ares were sensitized in different progressive episodes at the timeline described further below.

I believe there has been some tissue destruction by an autoimmune reaction to mycotoxins or a virus or bacterium, like HHV 3 (Herpes zoster), HHV 5 (CMV), HHV 6, or chlamydophila pneumoniae, all of which I have IgG antibodies to, Lyme (IGeneX 3/2020, IgM positive, IgG negative), or Bartonella elizabethae (IGeneX 3/2020, IgG positive, IgM negative).

A connection to playing soccer ages 7 to 23 has been suggested.

The proximate triggers for a progressive episode, when the sensitivity enters a new area of my body, appear to the naked eye as anxiety or a spell of bad sleep. And I’ve scored only in the low-to-moderate range of anxiety in all behavioral test I’ve taken. So I cannot afford poor sleep until I understand the sensitization mechanism better and am confident I can control it with medication or otherwise. Some kind of histamine reaction has been suggested. We suspect that diazepam, which I took regularly in most of 2018 and am taking again since November 2019, prevents these progressions from occurring through mast cell stabilization.

Mycotoxin testing by The Great Plans Lab showed me as exposed to Aspergillus and Penicillium, and we also discovered large amounts of (dead) Stachybotrys in my home of 6 years from water damage through a window leak.

No tick bites or rashes in recent memory. A lot of hiking as a teenager in Bulgaria though.

Above the threshold for mandelic acid on GPL’s Organic Acids (12/2019), allegedly a metabolite of styrene. My guess is this was due to my nighttime Invisalign retainer slowly degrading in my mouth, aided by acid reflux.

Severe exercise intolerance. For about 24 hours after volleyball, low-intensity basketball exercises (not games), or rock climbing, I have severe flares.

Also flares after 15 minutes of sauna, with glutathione, low-dose naltrexone, or cholestyramine.

Low-dose naltrexone seemed to accelerate the progression of my symptoms through poor sleep quality, anxiety, or perhaps by provoking mast cell activation. Two attempts made with a likely botched dosing protocol.

Chlorella tablets, when taken as prescribed on the packaging, cause me considerable stomach pain.

Diet: I usually eat a ton of salads, and when things really got going, I did eat a lot of sugary snacks too. Chocolate, alcohol, and spicy food trigger worse symptoms.

Here’s an abbreviated progression of symptoms. You can also see a detailed list, including meds and procedures, at the Major Event post.

• Spring 2006 — Occasional pain that started in my penis and testicles at age 20. For many years would occur only while stressed and seated and thinking hard. I thought this was probably muscle pressure or something I pulled while weight lifting in my freshman year of college.
• Ca. 2014–2015 — 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.
• July 2016 — The pelvic pain got especially severe seemingly overnight. Spread throughout pelvis, including the levator ani, maybe one of my adductor group muscles, around the coccyx, above my pubic bone around my bladder, as well as to the ischial and hip bursas. 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. A few days prior, I’d been 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.
• December 2016 — Developed IBS. Since then, if not controlled, this leads to my rapidly losing weight. Developed a scalp rash.
• March 2016 — Developed neck and shoulder pain. I now believe this is a reflection in the CNS of pain in my ischial bursas. Unclear why then. This pain is controlled well with prescription NSAID’s or steroid injections. Alternatively, for about two years, it was alternatively kept at bay by taking 30mg amitriptyline nightly.
• Took diazepam regularly for a while and didn’t progress much in 2017. The diazepam was prescribed as a muscle relaxant. Later, I thought diazepam stopped my progression by suppressing any anxiety and ensuring extra good sleep.
• March 2019 — 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.
• July 2019 — 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 poor sleep while sharing my bed with a partner over a few weeks.
• September 2019 — 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.
• December 2019 — Started taking diazepam regularly again based on the mast cell stabilization theory. A mycotoxin test by Great Plain Labs showed multiple metabolites in my urine, and the provocation protocol for it, liposomal glutathione and sauna, caused a major flare. Dieting, taking toxin binders, and learning DNRS. Feeling stable.
• February 2020 — Realized I was in a flare reacting to, most likely, cholestyramine. Stopped all binders. Was prescribed fish oil, Parasym Plus, and Mirica, to beat back the flare, which worked at least partially.
• March 2020 — The diet showed nothing new. Had home evaluated for mold, found mold, began remediation of home and possessions, and moved out. A Neuroquant MRI later did not show a mold-exposure-like profile, but did show an unusually high gray to white matter ratio. The reading was, “a pattern that is consistent with traumatic injury, although it’s also seen in normal people”. Smells funny like all the “unusually advanced osteoporosis” that kept popping up on all my spinal MRI’s.

Text update log:

• 07/06/20: Noting lack of clarity on hEDS vs HSD.
• 07/03/20: Further highlights and observations concerning hypermobility.
• 07/01/20: Extensive edits throughout, hypermobility update.
• 06/03/20: Wrote the first version.
• 06/15/20: Minor updates on current treatment.