Ben’s Health

For much of his life, Ben was coping with the combined effects of childhood and adult trauma and PTSD, autism spectrum disorder, manic depression, and suspected chronic Lyme. He may also have had autoimmune issues for some time. Ben was resilient enough to manage these problems to an extent, but in 2018, he went on a thousand-mile hiking expedition across Europe, the Middle East, and India, and it was on this trip that his health collapsed. So many things went wrong on this trip, and he developed so many chronic symptoms in so many parts of his body afterwards, that getting any universally agreed-upon diagnosis has been challenging. Here are just some of the things that happened before and after Ben’s hiking trip.

🔪 Shoulder surgery right before trip (healing while hiking)

🦠 Infected tattoo during hike

💉 Treating tattoo with oral and topical antibiotics while hiking

🚰 Drank from open streams in Alps, Corsica, and Jordan while hiking, got diarrhea

💉 Vaccinated while weak after hiking hundreds of miles; resumed hiking without sufficient recovery (yellow fever, malaria, typhus, hepatitis A, Japanese encephalitis, and rabies vaccines)

🩸 Likely tick exposure in many places, including the Alps and Sweden

🫲 Developed finger joint stiffness while hiking

🤕 Multiple head injuries while hiking

🦟 Bitten by clouds of mosquitoes while hiking in Sweden

🥾 Hiked 40+ miles through the desert of Jordan in one go with no sleep

💧 Life-threatening dehydration in Jordan desert

🌞 Possible sunstroke in Jordan

💢 Chased by strangers through desert of Jordan at night

🐐 Ate balls of goat's cheese offered to him by a Jordan nomad

👂 After arriving in India, flu-like symptoms and two ear infections

⛰️ Altitude sickness in India

💉 Shot of dexamethasone in India for altitude sickness

After that, Ben was never the same. He developed an avalanche of symptoms, many of which never went away. Early chronic symptoms included:

⚡️ Sharp pinprick pain instead of sweating

🔥 Burning in head and spine

🧠 Pressure in head

🧠 Confusion

🧠 Memory impairment

🫩 Fatigue

💪 Weakness

👁️ Blurry vision

🛌 Insomnia

💤 Non-restorative sleep

💢 Episodic rage

👀 Aching and tiredness behind eyes

💡 Hypersensitivity to light

🔕 Hypersensitivity to sound

🏃 Post-exertional malaise

⏳ Slow healing

🥱 Constant sleepiness

👂 Tinnitus

Symptoms continued to develop. Additional chronic symptoms Ben developed before jail included:

💪 Muscle twitching

🥶 Thermodysregulation

📍 Pins and needles sensations all over

⚡️ Sudden jolts of pain in different areas

🧠 Terrible neurological reaction to azithromycin and rifampicin

🤯 Blinding head pain

👃 Dry red patches on left and right of nose

🔴 Red speckled streaks on various parts of the body

🤲 Postural orthostatic tachycardia syndrome

🤕 Concussion after minor impact

🍽️ Weakness and tiredness chewing (went away, came back later)

😥 Lower back pain

🦵 Sciatic pain

👁️ Burning in eyes

🫲 Worsening hand/wrist pain

❤️‍🩹 Worsening chest pain

🦵 Ankle pain

These symptoms are well-documented in Ben's journal entries, conversations with friends and family, medical correspondence, and of course his medical records. Obtaining all of these records is no mean feat, considering that Ben saw dozens of doctors after his health collapsed. Please note that he has never been and is not a hypochondriac. Before 2018, he went to the doctor only every so often and never let health concerns dominate his life. Even after shoulder surgery in 2015 and despite developing disabling bilateral hand/wrist pain in the same year, Ben refused to become a worry-wart and simply got back to his life. This is powerful evidence that Ben isn't the type of person who by nature haunts doctors' offices.

Rather, only after he himself became haunted by the specter of a mysterious multi-system disease that wouldn't go away was Ben forced to spend so much time seeing doctors. Many of those he saw initially couldn't make heads or tails of his illness. His testing was mostly normal, they said, so they were stumped. Thus, Ben did what any person would do under the circumstances: he saw other doctors. Eventually, he obtained three overlapping diagnoses.

🤒 Myalgic encephalomyelitis (ME/CFS)

🤒 Chronic Lyme disease with co-infections and neurological involvement

🤲 Postural orthostatic tachycardia syndrome (POTS)

Both the ME and Lyme diagnoses were rendered by multiple specialists, some at the top of their respective fields. POTS was confirmed by tilt-table test at UCLA.

Because of the lack of consensus on Lyme and ME and because his symptoms kept developing, Ben continued searching for answers at doctors' appointments. He drove, he flew, he did whatever he had to do. Soon he learned he wasn't so abnormal. Many people with complex illnesses struggle for years to get a diagnosis. For example, lupus patients take an average of seven years to diagnose, and patients are expected to get misdiagnosed along the way. But Ben had only been pursuing a diagnosis for five years prior to jail, and it wasn't enough time.

As indicated earlier, not long before jail, Ben began testing positive for antinuclear antibodies, suggesting a possible autoimmune disease, and anti-dsDNA antibodies, suggesting possible lupus. The negative labs Ben got before jail included:

🧪 HLA-B27 gene for ankylosing spondylitis, an autoimmune disease

🧪 IGeneX: Lyme indeterminate (likely positive) co-infections present

🧪 Positive anti-nuclear antibodies (twice - indicates possible autoimmune disease)

🧪 Positive anti-dsDNA antibodies (twice - indicates possible lupus)

🧪 High Epstein-Barr virus

🧪 High cytomegalovirus

🧪 High HSV-1

🧪 White blood cells at bottom of range (range also applies to the elderly)

🧪 Repeatedly elevated ALT levels (liver)

Ben spent at least five years before jail with untreated chronic disease, resulting in various forms of disability that predate his incarceration.

🪫 Had to ration energy. On bad days he had to make tough choices, like whether to shower or make the bed.

🪟 Sensitivity to light and sound. He had to nail blankets over windows to block out both, even at his parents' house, a quiet place in the country.

✋ Severe hand and wrist pain since injury in 2015, which worsened after 2018. Ben was well known among friends and family for dictating most of what he wrote. If he used his hands too much they could become so painful as well as stiff, swollen, and weak that he had to take long breaks from using them. He had special ice packs that could encircle the wrists and often wore them to sleep.

🔥 The burning and pressure in his head could get so bad that he had trouble performing many mental tasks, including reading.

👀 He sometimes got an aching and tiredness behind the eyes that made it difficult to read, watch TV, drive, and use his eyes for other things.

⚡️Got sudden jolts of pain that could startle and disorient, and sudden blinding pains in the head in particular, one of which caused a car crash.

🙆 Had trouble performing tasks that required lifting his arms over his head, especially repeatedly. He has arthrosis in his right shoulder after two surgeries, but both shoulders began getting weaker after 2018.

🛌 Insomnia and non-restorative sleep. Even when he slept, he could wake after 10+ hours of sleep feeling the way he once had after skipping sleep for multiple days.

🏃 Post-exertional malaise. A man who hiked almost 500 miles was afterwards reduced for years to a fragile state in which the slightest amount of exercise could cause a cascade of worsening symptoms. He had to warn friends about this, and it often embarrassed him that he came off like a weakling.

🫳 Had trouble bending down due to weakness, fatigue, back and joint pain, pressure and pain in the head, and sometimes chest pain, dizziness, and lightheadedness. His diagnosed postural orthostatic tachycardia syndrome didn't help. He used a grabber tool to get things off the ground.

Prior to jail, Ben had remained functional only because he was able to adapt to his illness in many ways that aren't possible in jail. After entering custody, Ben's pre-existing symptoms began worsening, and he developed new symptoms. Chronic symptoms that have developed since jail include:

💓 Worsening POTS and rapid heart rate

💔 Frequent chest pain

🥵 Worsening burning and pressure in head

🤕 Pressure and pain in left temple (after punch)

⛰️ Worsening pressure and pain in left temple unless elevated

📈 High blood pressure (getting worse)

⛰️ Worsening pressure and pain in right temple unless elevated

🚹 Flank and bladder pain

🦵 Elbow pain when arms left bent

🧎 Knee pain when legs left bent

👣 Bilateral ankle pain

🔀 Split stream and failure to void all urine

👔 Neck pain (center front, mid and lower)

🦵 Worsening knee pain

🫨 Active tremor (especially noticeable on face)

🏋🏻 Aching in thighs when sleeping on stomach

⚙️ Ratchet-like movement in legs, fingers, neck

🏋️ Weakness in legs

🫀 High cholesterol

🙋 Aching glands, especially neck and armpits

👤 Left shoulder pain (right already had arthrosis)

🦵Hip pain if sleeping on side

🫁 Pain inhaling

🤳🏼 Worse weakness and tiredness in arms and shoulders

🦵 Worsening weakness and tiredness in legs

👅 Weakness and tiredness in tongue, jaws, and throat muscles

🔙 Worsening pain and stiffness in lower back

His diagnoses since jail include:

Diagnosis Since Jail

🧈 Fatty liver

High cholesterol

enlarged prostrate (incorrect)

stage two kidney disease (incorrect)

Hyperthyroidism (resolved)

Hypothyroidism (resolved)

His negative labs since jail include:

🧪 Positive anti-nuclear antibodies (again - suggests autoimmune disease as possibility)

🧪 Positive anti-dsDNA antibodies (again - suggests possible lupus)

🧪 Hyperthyroidism (resolved)

🧪 Hypothyroidism (resolved)

🧪 Elevated ALT levels

🧪 High Cholesterol

His level of disability has increased substantially since jail. Disability issues that have arisen since jail include:

🧎‍➡️ Difficulty standing from seated position while handcuffed due to knee pain.

🧍 Cannot stand for long due to multiple factors: joint and back pain, weakness and fatigue, POTS, and burning in his spine. If he stands for too long, he gets a cascade of worsening symptoms affecting his brain and body and is often laid up in bed for days afterwards.

🚶 The same is true for walking, he was using a cane but he's got so much worse, so quickly, that he’s now using a walker.

✍️ Increasing difficulty using his hands for many purposes. He has to fill out so many medical forms and grievances, that his impaired hands and wrists are constantly painful, and he's often unable to use them for other things.

🧹 He cannot clean his own cell due to trouble bending down, hand pain, increasing and severe exhaustion, joint pain generally, worsening POTS, chest pain, lightheadedness and dizziness, pressure and pain in head when leaning over, weak shoulders and arms, weakness in legs.

🧠 He cannot lean over for long due to the above-mentioned pressure and pain in his head, which worsens if he does. The pressure builds first in his left temple, then affects the right, and both pressure and pain can make it hard to think.

😴 Needs close to 16 hours of sleep to function.

🛌 Even with a very short day, he must remain in bed for most of it or symptoms escalate rapidly.

☎️ Sometimes struggles to finish a full phone call due to weakness in his tongue, jaws, and throat muscles, and gets tired chewing and swallowing as well.

🧏 Sometimes can't hear well due to chronic ear infections.

🤯 Must sleep with head elevated or gets pressure and pain in temples.

Here's an abbreviated list of some of the reasons for Ben's worsening health in jail.

💊 Loss of most of his pre-jail meds

⚕️ End to thorough attempt at diagnosis

😷 Diagnosed COVID

🧤 While fighting COVID in Twin Towers, had only a single sheet and blanket during a very cold winter and while the jail's heating system was broken (other inmates died of hypothermia)

🤕 Concussion

🤢 Housed in unclean cells smeared with blood and feces

💤 Severe sleep deprivation

🤢 Slept in urine-soaked bed after cup-fulls were thrown into his cell

🫁 Likely pneumonia

🩺 Diagnosed UTI

😷 Multiple bouts of suspected COVID or flu, plus numerous other suspected infections from seasonal and communal diseases

🦠 Fungal skin infections

👂🏼 Multiple diagnosed ear infections

🚽 Broken toilet for eight days; had to defecate in tortilla bags and deal with stench

☠️ Black mold exposure

🦵 Multiple untreated joint injuries

🥶 Constant hypothermia during winter months (Title 15 allows only two threadbare blankets, and since 2018 Ben has had thermoregulation problems)

🐀 Rats in cell (Ben reports having to kick them away from the door)

👀 Ajax in eyes and throat/lungs while cleaning his cell

💨 Ongoing contact highs from nearby hard drug use

🧍 Forced to stand and walk despite injury, weakness, and pain

💧 Contaminated drinking water when his sink was broken and he relied on water from other inmates

🚰 Severe dehydration when sink was broken and he no longer trusted outside water

🫁 Diagnosed lung infection (untreated for a month and a half)

💊 Painkiller cancelled despite pleas (a very safe painkiller, not an opioid, and cancelled just two days after Ben casually told his doctor he could not live without it)

💤 No sleep study despite possible sleep apnea

🍽️ Poor diet for three years (the standard jail diet isn't remotely healthy, nor is the supposedly low-sodium diet Ben is on)

💨 Unclean air from vents choked with rats, mold, dirt, and debris

🚰 Drinking water tainted with corroded metal, mold, and occasional chemical infusions that make it undrinkable

⛅️ Due to sleep disorder, pain, and weakness, often cannot go to yard where he is kept in a cage without a chair and must stand or sit on asphalt ground that reeks of urine and sometimes shit. So he's only had prolonged direct sunlight a few times in the last two years

👩‍⚕️ Numerous appointment cancellations, and reschedulings

🛌 Inability to elevate head in bed with Title 15 provisions; no accommodation provided despite his documented complications

👮‍♂️ Outside medical housing: deputies who actively harassed and tortured Ben in various creative ways

👮‍♂️ In medical housing: (some) deputies and nurses do not understand his confusing illness; they insult him; refuse to take his medical forms; avoid taking him to the clinic and to appointments, and resist sending him to the urgent care and the ER (even with verified blood pressure over 200, shortness of breath, and chest pain)

🕦 Delayed appointments (after Ben began pushing for one, it took the jail 1.5 years to schedule a single rheumatology appointment, the only one he's had)

🧑‍⚕️ Refused appointments with key specialists like orthopedist, pulmonologist, and pain management specialist

🤷 Jail medical staff who do not remember what meds he's on, what conditions he has, and whether he's sick or not (COVID vaccine offered to him three days before he was in the ER with a lung infection he'd been reporting for a month and a half; vaccination under these circumstances is not safe)

💊 Missing pills at pill call

💊 Dirty pills at pill call (for example, one pill had brown goop on it)

🩺  Staff who redo vitals until they get ones they like, then fail to report the bad vitals

🤒 Three years of untreated illness in jail on top of years of illness before that

The result of all this is an inmate who can barely be said to be living. He spends often 16 hours hurting in bed, only to spend the mere eight he has left still mostly bedridden. If he attempts much outside bed, he is wiped out and must spend days or even weeks recovering, depending on the level of exertion. His chronic illness makes him more vulnerable to infection, and he spends every winter and often parts of the warmer months in a near-constant state of sickness, either because his weakened body can't win a decisive victory over infections or because he keeps getting re-infected, or both.

He wants vaccinations, but he must be relatively healthier to mount a strong immune response to vaccines. Since his health is only spiraling downwards, and since he's often dealing with new infections on top of his chronic issues, he's in a catch-22. The only way to stop the spiral is to diagnose him completely and then treat him thoroughly. Right now, diagnosis is at another grinding halt. Ben's blood tests and symptoms suggest the strong possibility of autoimmune disease, but his one rheumatology appointment in three years wasn't very helpful. The doctor said he couldn't find some of Ben's information in the system, and some valuable information was not known at the time of that appointment. Still, the jail has not scheduled a follow-up appointment. The original appointment was in July 2025.It's been five months since then.

Ben, who is still in his 30s, has had many heart-to-hearts with family, explaining his credible belief that he does not have many years left if the situation doesn't change. So it must change. It absolutely must change.