This is my Chronic Illness Story
(As of April 2019)
First, I should start with a disclaimer: nothing on here should be taken as medical advice (or legal advice for that matter). Although I am a licensed attorney (voluntarily inactive as of 2019), I’m not a medical doctor. Rather, I wanted to share my personal illness story because as I have found through online interactions, many other patients have had similar experiences or symptoms, and I thought it might help fellow patients to know they’re not alone and their symptoms are anything but “made up” or “in their heads.” There are many of us out there, a point Jen Brea made very eloquently with her documentary Unrest, which I would highly recommend to fellow patients but especially to carers and healthy individuals, be they friends, family members, physicians, or government officials.
I was born in 1981, and was 37-38 years old as of the writing of most of this. I had a happy, uneventful childhood and have always been blessed with unusually good health. Before Gulf War Illness (or ME/CFS and Fibromyalgia, depending on which doctor/disability claims administrator you ask) robbed me of the life I had known starting slowly in 2014 and intensifying beginning in 2015 until I was largely as disabled as I am now by 2016, I was an extremely active, fit, military officer, attorney, and father of four. I ran all the time and routinely came within 1-2 points of maxing out my military physical fitness tests. I enjoyed hikes and being outdoors. Now I get winded walking up a flight of stairs. If I go for a 15 minute jog or spend 30 minutes in the pool, I’m bedridden for days. I’m in constant pain and have been prescribed so many different medications I stopped counting. Opioids are the only thing that allow me to function but in the United States they’re considered an ‘epidemic’ and it’s getting harder to get a prescription for them. The worst symptom for me is not the physical fatigue or even the pain—it’s the mental fog and exhaustion. I sometimes can’t find everyday words to say what I mean, or forget what I’m doing in mid-task. The thought of my cognitive impairment worsening into full blown dementia terrifies me, and when my brain refuses to function as I think it should, I get very frustrated and irritable.
While in my mid-30s awaiting retirement orders from the military, a process which took way too long, I regularly worked with a woman in her 80s who displayed more energy than me. I lost my dreams, I lost my career because I was too sick and considered a burden, and my poor family had to put up with me because not being a parent was not an option. (Looking back a year later, I can see a lot of self-pity in my words that I’ve since transcended. My illness is what it is, but there is absolutely no sense in wallowing in it. The only thing I or anyone else can do is make the most of each day, within the physical and mental capacity I’m given that day). My “invisible illness” is just as debilitating as any other chronic, incurable disease that affects the nervous system and the entire body system wide, but because there’s no simple diagnostic test for it many people and even doctors don’t take it seriously. As one with an invisible illness, if you don’t know me you might think I look perfectly fine—but my brain and body are a total disaster. Outwardly, I’m not faking being sick–I’m faking being well! I’m incredibly thankful that a handful of doctors DID believe me, and did the right tests that showed my central nervous system was seriously unbalanced and that my brain had widespread hypo-perfusion, terrifyingly, a common prelude to dementia in the elderly. But for them, I might still be undiagnosed and wondering what is wrong with me.
I don’t ask for a miracle cure, although I’d love to have my life back, but I do ask you to take me seriously. Doctors should do no harm to their patients, and that includes dismissing them as hypochondriacs or worse, malingerers. The same goes for disability benefits administrators. Believe me, we’d much rather do meaningful work than wallow in our disease. Nobody asks to be afflicted like this.
I joined the United States Air Force in 2007, in excellent health with no medical issues. I had 20/15 vision, confirmed at MEPS (I was told “wow, you could be a pilot!” by the examining physician) although I commissioned into the Judge Advocate General’s (JAG) Corps as a licensed attorney. I first developed retinal/ocular migraines while stationed at Kadena Air Base, Okinawa, Japan, between 2009-2012. I would not get the prostrating headache normally associated with migraines, but blurred/diminished vision in my right eye accompanied by very bright lines and blobs that looked like lightning except for their shape. My vision would return to normal after about 20 minutes. I went to see an optometrist in 2011 because I was concerned about the strange visual cues, but she examined my eyes and pronounced them healthy. She noted that based on my description of the symptoms, it seemed I had “ocular migraines,” which were not normally something to worry about. My eyesight was still 20/15.
I deployed to Bagram Air Field, Afghanistan from September 2013 through March 2014. While deployed, I experienced a runny nose, headaches, stiff/painful joints, issues with still feeling tired after sleeping, diarrhea, and frequent indigestion. (I only “remember” these symptoms so specifically because I filled out a form the day I returned to American soil, a form that ended up in my military medical records and I have since reviewed. I was actually stunned when I read this form because it was as though the clues were right there in front of me all along and I never realized it). I worked nights while deployed, and spent very little time out in the sunlight. The air quality was poor, and those few occasions I dared run outside I was hacking and coughing for several days thereafter, and blowing out brown or black discharge from my nose. The pesticide truck spraying around the plywood structure I worked out of and our sleeping quarters (a plywood B-hut for the first month or so of my deployment, a metal RLB for the remainder) was a daily, or almost daily, occurrence.
My uniforms were all treated with Permethrin designed to maintain its effectiveness even after six months of laundering. Blowing sand/dust was a regular occurrence. We were required to ingest anti-malaria pills that have been the subject of some controversy. There was a burn pit at Bagram as well as burn barrels on our small Task Force camp, which at times gave off odd colored smoke and strange smells. I took several trips to Kabul (including several overnights at Camp Integrity as well as day trips to Kabul International Airport and Camp Phoenix), and could taste something metallic in the air. Kabul had even worse air quality than Bagram. I also visited Mazar-e-Sharif, Jalalabad, Kandahar Air Field, and Forward Operating Base Shank, all of which I slept at least one day/night at. I also took day trips to Shindand, Herat, and Forward Operating Base Bastion, but did not overnight at any of these locations. I took anti-malaria pills, which I was prescribed by an Air Force doctor and ordered to take for the entire duration of my deployment. I later looked at the FDA warnings for that medication and noted that the Air Force required me to take the medication well past the time limit the FDA determined to be “safe.” I received the Anthrax vaccine as well as the smallpox vaccine, the latter causing more side effects and discomfort than the former. My regular work schedule was 12 hour days, 7 days a week. I never had a day off or even a “half day.” As operations or work required extra time, I occasionally worked longer shifts, but I was pretty good about managing my time and had a reputation among the members of my office for having the most set “routine” as well as being the most emotionally stable—I didn’t get upset and I didn’t let things bother me. I just carried on with my duties, and managed to joke around a lot and try to boost the morale of those around me.
The deployment itself was an overwhelmingly positive experience for me, and I felt that I was doing meaningful work in support of military operations I agreed with. Because of who I worked for and what missions I supported, I am not at liberty to divulge many details of my deployment aside from what I’ve already noted above, but suffice it to say, I was given a unique opportunity to be a part of an amazing team, and even if exposures related to that deployment may be to blame for my present illness, I do not blame the organization I worked for and would happily support them again in the future. That’s part of the rub with all of this–I don’t think we intentionally hurt ourselves with friendly fire in the form of toxic exposures–but we need to change something about the way we deploy to ensure future Soldiers/Sailors/Marines/Airmen/Other Government Agency personnel do not suffer a similar fate.
One thing I should note about being in the military—it’s ingrained in our culture to “tough things out” and push through any aches or pains. We under report any injuries or illnesses and avoid going to sick call because we don’t want to appear weak or be accused of malingering.
I returned to the United States at the end of March 2014. Although I did not make much of it at the time, a few things stand out now that should have served as warnings to me: I experienced “jet lag” in spite of waking at exactly the same time on the East Coast of the United States as I had in Afghanistan, due to my odd work schedule while deployed. In spite of my alarm going off at precisely the same time as it had during my deployment once I was back home (not even one minute time difference Zulu/Greenwich Mean Time), I felt very fatigued and like my body’s clock had been thrown off. This was the same feeling I used to experience when traveling across the International Date Line during my station in the Pacific, which involved frequent travel to other countries/time zones.
I also experienced sun sensitivity. After seeing so little of that bright ball in the sky aside from the setting sun when I woke up for the day, or the rising sun on those “days” I worked later than usual, I felt like a vampire sapped of energy and life during the daylight hours. I craved the darkness and felt assaulted by the evil sunlight!
The other weird warning sign was my Physical Fitness Assessment that I took on 1 April 2014, a few days after returning home from my deployment. I had utilized slow hours during my deployment to work out more than usual, and had managed to get my mile-and-a-half run time down to less than 9 and a half minutes on a consistent basis. Therefore, I expected to breeze through my Fitness Assessment and score a 100% on all components (push-ups, sit-ups, and run) for the first time in my military career. Although I had never earned a perfect fitness score (because of the run), I always scored above a 90%, usually above 95%, with mile-and-a-half run times between 10 and 11 minutes. During the test, I found myself unusually fatigued, and was unable to max out my push-ups, try as I might. I normally maxed out my push-ups so this was extremely perplexing and frustrating to me. Even though I knew I could no longer earn a perfect score, I still decided to try to earn my best official run time of my career—that extra physical training in Afghanistan had to pay off! I was a mess on the track, and found myself breathless and unable to maintain the pace I had set for myself that was itself “easing back” from my runs in Afghanistan. I still scored over a 95% over all, but I should have earned a perfect score. My body wasn’t behaving as it should.
I took a month off work post-deployment to reintegrate with my family. Then, after a final month on the East Coast, we relocated to Southern California on military orders. Within 1 week of our arrival in California, the state where I attended undergrad/university and later earned my attorney’s license, I got a bad bout of conjunctivitis in both eyes, that the Air Force Clinic doctor declared was “pinkeye but not pinkeye” and prescribed me eye drops (Polyvinyl Alcohol Solution) for on 16 June 2014. The Air Force doctor also prescribed Pseudoephedrine Hydrochloride, Benzonatate, and Sodium Chloride Spray that same day. The conjunctivitis cleared up after about a week of treatment. Fairly shortly thereafter, I started getting occasional headaches. I would also wake up some mornings feeling like I had a mild hangover, although I had consumed no alcohol and was drinking plenty of water. Consuming a single alcoholic beverage (beer) would give me a bad headache regardless of the time of day. As a result of this discomfort, I stopped drinking alcohol except on very rare occasions. With the exception of my deployment when alcohol consumption was forbidden by general order, I normally had 1-4 drinks (usually beer) per week, 1 drink per day (normally with dinner). On rare occasions I’d have 2 drinks in one sitting. The headaches I began experiencing back in California sometimes included sinus pressure. I’ve now been a “teetotaler” since late summer 2015, avoiding any alcohol because I cannot tolerate it.
Again, with the benefit of hindsight, I am able to see that beginning in 2014, I lost the “runner’s high” that normally comes with exercise—at least for a healthy person. Instead, I became increasingly breathless with my runs, and my runs became less and less satisfying. I still managed to earn a good score on my April 2015 Physical Fitness Assessment for the Air Force, but I felt lousy after the run. I also recognize with the benefit of hindsight that as my June 2014 to July 2015 assignment in Los Angeles dragged on, I came home from work more exhausted and more irritable with each day. By the end of a full work day, I had difficulty concentrating, and trying to assist my children with even Elementary/Primary School level homework was an exercise in frustration and brain fog.
In March 2015, I went to see my military doctor on Los Angeles AFB because the increasingly frequent headaches and facial pain were irritating and frustrating. Occasionally during this time period, I would also experience dizzy spells. I had several retinal migraines. Previously I had only gotten these once or twice every 6 months, so they were quite infrequent and not accompanied by any nausea or earth shattering headaches. (I would sometimes get mild headaches after the visual cues, and would become sensitive to light while a retinal migraine was occurring). I was prescribed Fioricet by the Air Force Clinic doctor for “migraines.” Due to the frequent ordinary headaches and hangover feelings, I took Excedrin or Ibuprofen 3-4 times per week on average during Spring 2015. My military doctor at Los Angeles AFB said my headaches were probably caused by allergies, and prescribed me Allegra. It did not help at all. (And at any rate this was also not my first time living in Southern California—it was a homecoming). As an aside, I later had not one but two surgeries for chronic sinusitis—I will probably never know whether those sinus issues were related to my service in Afghanistan, but at least they were something treatable. Although my breathing has improved, I’ve seen zero improvement with my facial pain, which is constant.
In late spring 2015, I experienced stabbing pain in my right eye (the one that always experienced vision degradation during retinal migraines) that lasted for several days. I went in to the Los Angeles AFB Clinic but after an exam was told I was fine and it was probably just “muscle strain.” I was however advised to see the optometrist as it had been around 4 years since my last checkup.
I saw the Los Angeles AFB optometrist the first week of July 2015, right before relocating to Riverside County (east of Los Angeles) on another military move. The Air Force optometrist diagnosed me with myopia in my left eye, and a mild astigmatism in my right eye. My left eye (which happens to be my dominant eye) needed a stronger degree of correction. I had hoped that my vision changes were the cause of my headaches, but it turned out that wearing glasses did not improve the headaches. The degradation in my vision also came as a surprise, as in August 2013 during pre deployment shooting range training the range officer was impressed with my accuracy at 300 yards with an M-4 (basically, an AR-15) rifle. In fact, he instructed me that in spite of being right-handed, I should shoot left handed or “southpaw” because my accuracy with my left eye was such that he felt I would’ve earned “expert marksman” had I completed weapons qualification shooting left-handed (I qualified right-handed). In other words, my long range vision declined significantly between Autumn 2013 and Spring 2015, the span of a mere 1.5 years.
After moving about 70 miles east of Los Angeles in July 2015, my headaches and facial pain almost immediately became much worse. At first this reinforced the “allergy theory,” but I spent one week in Georgia, on the other side of the United States, in late July 2015, and didn’t feel any noticeable change in my symptoms. The jet lag from changing time zones by 3 hours was enormous, however. During this time I also started having frequent episodes of dry, scratchy eyes. (I currently take prescription eye drops for “keratoconjunctivitis sicca”). I would later have 3 blood tests plus a lip biopsy to test for Sjögren’s Disease–all of these came back normal/negative.
Additionally, I finally became self-aware of unnatural, very notable fatigue nearly every day since around the start of August 2015, and the tired, flu-like feeling would not go away with sleep or rest but lingered all day. Since September 2015, I began having trouble finishing a cup of hot coffee before work (it made me feel nauseous if I drank it too fast), but had to bring it with me to finish slowly (taking about an hour to drink one cup). I also stopped eating a full breakfast and began eating a single cup of yogurt, again due to the stomach sensitivity upon waking. I also started feeling bloated on occasion (which is now constant or near-constant). I should mention that the move in July 2015 was unexpected and very stressful. Although I firmly believe my illness is physical, and later had the studies that prove it, I also have enough self awareness to realize that stress exacerbates my symptoms. Any physical, mental, or emotional exertion causes my symptoms to “flare up” or worsen.
At the end of September 2015, I had the worst headache I’ve ever experienced in my life. It was a “migraine” (cluster headache?) that centered around my left eye, which felt like I had something boring through it into my face. I was dizzy, nauseous, crumpled over in pain, and light sensitive. It started around 3:30 p.m. and I was in bed by 6:00 p.m. I think I actually whimpered from the pain—it was that bad. I quite honestly just wanted to die at that time, the pain was so bad. The pain didn’t go away until I woke up the next morning. Even then, the following 2 days I felt like someone or something was gripping my left eye. A few days later, I felt a slight stabbing pain in the same eye, but this was tolerable and went away after a few hours.
From September 2015 through May 2016, my fatigue (both physical and mental) gradually progressed, slowly but steadily decreasing my productivity at work and ability to concentrate. Back and joint pain likewise progressed, and gastrointestinal distress, an unhappy memory from Afghanistan, again became noticeable sometime in Autumn 2015.
Running (and any form of physical exertion in general) became so painful and so counterproductive for me that by Spring 2016 I knew I could not run a mile-and-a-half in under 14 minutes, which would cause me to “fail” my Air Force Physical Fitness Assessment. This forced me to “come out” about having an illness, so I could get a doctor’s exemption from the run portion of the Fitness Assessment. I had not decreased my personal physical training, as excruciatingly painful as it had become, so I knew it was not deconditioning that was to blame for my poor exercise performance—it was exercise intolerance. I would later become familiar with the term “post exertional malaise (PEM),” which very accurately describes the effect of physical, intellectual, or emotional exertion on my body. As an aside, recommendations for Graded Exercise Therapy for ME/CFS patients make me laugh derisively, as I was highly physically conditioned yet continued to decline, and the PEM eventually forced me to greatly reduce my level of physical activity. “Deconditioning” has nothing to do with the disease, which is not a mental health disorder–something is very wrong with the patients’ brains and bodies, as proven by objective scientific studies.
Beginning in 2015, I began a long and frustrating journey toward diagnosing what was wrong with me. Ultimately this journey would undoubtedly have been significantly longer, more frustrating, or downright hopeless, had it not been for my extremely good fortune in finding a Primary Care Physician (General Practitioner for those of you across the pond) who cares deeply about all of his patients and keeps searching until he finds answers, rather than brushing off “medical mysteries” or dismissing symptoms that aren’t backed by common lab results, as unfortunately too many doctors are prone to do.
With his permission, I’m going to mention my doctor by name, although as of the writing of this he is not currently able to accept new patients: Dr. Paul Lizotte, D.O., F.A.C.P., Board Certified in Internal Medicine, Radiology, and Nuclear Medicine, formerly a Full Professor of Medicine at the University of California, Irvine, Associate Professor of Medicine at the University of California, San Francisco, and Associate Professor of Medicine at Ohio State University. He also spent 15 years as a physician in the United States Army Reserves, and served on over 40 Medical Evaluation Boards (to determine the retainability vs. disability of Soldiers suffering from various medical ailments). Of course, I didn’t know all of these qualifications when I first met Dr. Lizotte, but this is the caliber of PCP (GP) I was fortunate enough to be assigned. In addition to my wife, he really helped keep me grounded during my search for a diagnosis for my increasingly debilitating symptoms.
The first “solid” diagnosis I got was in February 2016, from the first of three Rheumatologists I saw: Fibromyalgia. To be honest, I was very unhappy with this diagnosis, as I had read enough about it to realize it was considered a “controversial” diagnosis that some doctors didn’t even believe was a “real” illness. I sought a second opinion by a University Rheumatologist in May 2016 and he confirmed the diagnosis of Fibromyalgia. That still wasn’t good enough for me, and since I was lucky enough to have a very good PCP (GP) who was willing to indulge my search for answers and unwilling to give up on me as a patient when many others probably would have, the search continued. Come to think of it, if not for Dr. Lizotte, I don’t know what would have become of me. I owe him so much for never stopping the search for what was wrong with me, and for believing me as a patient rather than dismissing my numerous and seemingly unrelated complaints.
I had dozens upon dozens of lab tests: CT scans, MRIs, urine tests, and oh so many blood tests, all of which came back “normal” and practically gave me panic attacks worrying about the results of each test and whether it would finally give me some answers, even if they were scary answers, or whether I was destined to forever remain in doubt about what was actually wrong with me. Again, I was very fortunate to have a physician who believed me, although I overheard some of the staff snickering behind my back that I was a “hypochondriac” and saw the disbelieving looks some of the nurses gave when they took my weight and blood pressure at each appointment. A few of the nurses were good, compassionate professionals who I was grateful for each time I saw them. I wish I could say the same for all of them.
Here are some of the blood and urine tests I had done:
- Complete Blood Count
- Immature Granulocytes
- MCH (very slightly elevated depending on which lab’s standards applied)
- MCHC (very slightly elevated depending on which lab’s standards applied)
- A/G Ratio
- Alkaline Phosphatase
- ALT (slightly elevated)
- BUN/Creatinine Ratio
- Calcium (normal in blood, slighly elevated in 24-hour urine in March 2016 but normal when retested in July 2016)
- Carbon Dioxide
- T-4, Free
- T-3, Free
- Nitrite, Urine
- Occult Blood
- Specific Gravity, Urine
- WBC Esterase
- Vitamin D, 25-Hydroxy
- Celiac (DGP IgA, DGP IgG, Gliadin (AGA) IgA, Gliadin (AGA) IgG), Gluten IgG, t-Transglutaminase (tTG) IgA, t-Transglutaminase (tTG) IgG, Endomysial Antibody IgA, Immunoglobulin A, Qn, Serum)
- C-Reactive Protein
- Sedimentation Rate-Westergren
- Lupus (SLE)
- Actin (Smooth Muscle) Antibody
- ANA Direct
- Anti-DNA (DS)
- Antiparietal Cell Antibody
- Antiscleroderma-70 Antibodies
- Anti-striation Absolute
- Mitochondrial (C2) Antibody
- RNP Antibodies
- Sjögren’s Anti-SS-A
- Sjögren’s Anti-SS-B
- Smith Antibodies
- Thyroid Peroxidase
- Prolactin (slightly elevated)
- Rheumatoid Arthritis Profile
- CCP Antibodies IgG/IgA
- RA Latex Turbid
- Coccidiodes ID Antibody
- Coccidiodes CF Antibody
- Cortisol Baseline
- Cortisol Stimulated
- Interleukin-5 Serum
- Alpha 1 Globulin
- Alpha 2 Globulin
- Beta 1 Globulin
- Beta 2 Globulin
- Gamma Globulin
- Hemoglobin A1c
- Hemoglobin A1C Glycosylated
- Folate, Serum
- Hepatitis B Surface Antigen
- Hepatitis B Core Antibody (IGM)
- Hepatitis B Core AB Total
- Hepatitis B Surface AB Immunity
- Hepatitis C Antibody
- Immunoglobulin A
- Immunoglobulin G
- Immunoglobulin M
- Iron, Total
- Iron Binding Capacity
- Iron % Saturation
- Parathyroid Hormone, Intact
- Testosterone, Total, LC/MS/MS
- Free Testosterone
- Thyroid Peroxidase Antibodies
- Uric Acid (slightly low in March 2016, but normal in January 2016)
- Vitamin B12
- N-Telopeptide, Urine
- Creatinine, Urine
- N-telopeptide/Creatinine Ratio, Urine
- Lyme IgG/IgM Ab
- Tyroglob Ab
- Total IgG
- IgG 1
- IgG 2
- IgG 3
- IgG 4
- IgE, S
- NRBC auto
- NRBC Abs
- Imm Platelet %
- RF Qnt
- HIV 1/O/2 Ab
- Heavy Metals (Lead, Arsenic, Mercury)
- Anticardiolipin Ab, IgG, Qn
- Anticardiolipin Ab, IgM, Qn
All of these labs came back “normal,” “non-reactive,” i.e. no issues with any of the “usual suspects” that could explain my symptoms.
I also had the following tests done:
- Full Body CT scan (done privately and paid for out of pocket–it showed osteopenia, a kidney stone I later passed, mild multilevel degenerative disc disease of the thoracic spine, and unilateral spondylolysis (defect or stress fracture) on the L5 vertebra on my lumbar spine–no clues as to my underlying diseases though)
- Transthoracic Echocardiogram
- Exercise Stress Test
- Cerebrovascular Evaluation
- 3 Sinus CT scans (the third and final utilizing Medtronic Protocol)
- Visual Field Examination
- Pupil Dilation and Exam
- Brain MRI
- Lower Spine MRI
- EMG/NCS Test for Large Fiber Neuropathy
And for really good measure, the following additional labs:
- Mayo Clinic Autoimmune Dysautonomia Evaluation, S
- ANNA-1, S
- Reflex Added
- Striational (Striated Muscle) Ab, S
- N-Type Calcium Channel Ab
- ACh Receptor (Muscle) Binding Ab
- AChR Ganglionic Neuronal Ab, S
- Neuronal (V-G) K+ Channel Ab, S
- GAD65 Ab Assay, S
- P/Q-Type Calcium Channel Ab
All of which were normal. I also had some genetics testing done:
- Invitae Sequence analysis and deletion/duplication testing of 70 genes, including:
Also all normal. Apparently I have phenomenal genes. I should be a sperm donor or something. On the bright side, the genetics testing made me feel less anxious that I might have passed on some “bad” genes to my children! Thankfully, they were all born before my deployment so any toxic exposures I received could not have mutated the DNA I passed on to them. I’m very thankful for that!
One thing that may be worth noting is that I had a sleep study done in May 2016. It was an overnight, “in lab” sleep study where I slept at the doctor’s facility, hooked up to a lot of EEG monitors and other equipment, including a device to check my breathing. I was also monitored via infrared camera. The sleep study (1) found I did not have any form of sleep apnea, (2) found that I did not have restless leg syndrome or excessive movement in my sleep, but (3) found that while my “sleep onset” was normal (17 minutes), my REM sleep onset was delayed, and my sleep was delayed with architectural disruption. At that time at least, my “sleep efficiency” was rated at 75.4%.
Importantly, I think, back then I didn’t have difficulty sleeping. If anything, I had hypersomnia–I slept too much if not woken by an alarm. In contrast, by mid 2017, my sleep was (and still is) much worse, and without medication I am wakeful throughout the night and hardly sleep at all. On “bad nights,” even with medication I wake many times and have difficulty getting back to sleep. Regardless of whether I sleep through the night, I wake up feeling unrefreshed, so I suspect my “sleep efficiency” has declined and I’m not getting enough deep, restorative sleep.
My physician, Dr. Lizotte, managed to get me enrolled into a study at Georgetown University with Dr. James Baraniuk, one of the nation’s leading researchers into both Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Gulf War Illness, yet another “controversial” diagnosis that some doctors believe in and others don’t. He did so because Dr. Lizotte suspected I could have Gulf War Illness or Chronic Fatigue Syndrome. However, finding a specialist who believes in either illness and has any idea how to diagnose, much less treat, either is a difficult prospect. I participated in Dr. Baraniuk’s “Exertional Exhaustion in Chronic Fatigue Syndrome (CFS)” study from 1-3 August 2016, because as an active duty US military member I could not participate in his virtually identical Gulf War Illness study because it was funded by the US Department of Defense and active duty military members cannot participate in DoD-funded research.
Finally, at Georgetown, I saw a specialist who knew all about my mysterious ailments, and was able to diagnose me with: Chronic Multisymptom Illness (the US Department of Veterans Affairs’ rebranding of Gulf War Illness because they don’t like the original name), Gulf War Illness (per the “Kansas” GWI Criteria), Systemic Exertional Intolerance Disease (SEID), per the US Institute of Medicine’s 2015 proposed criteria for their rebranding of ME/CFS to destigmatize the disease by changing its name, Chronic Fatigue Syndrome, per the 1994 US Center for Disease Control CFS Criteria, ME/CFS, per the Carruthers Canadian Criteria for Myalgic Encephalomyelitis (ME/CFS), Fibromyalgia, per both the 2010 American College of Rheumatology (ACR) Fibromyalgia criteria and the 2011 Modified ACR Fibromyalgia criteria, Migraines (which were previously confirmed by multiple ophthalmologists, my Primary Care Physician, and later by a neurologist), Midfacial Segment Pain, and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, confirmed with Autonomic Nervous System and Respiration (ANSAR) testing, which measures not only heart rate but the activity of the sympathetic and parasympathetic nervous systems.
Interestingly, in spite of being a 2013-2014 veteran of Operation Enduring Freedom in Afghanistan, and not a veteran of the 1990-1991 Persian Gulf War, Dr. Baraniuk observed that I perfectly matched one of two subsets of Gulf War Illness veterans he had previously conducted a study on: the Stress Test Activated Reversible Tachycardia (START) Group of GWI. Like those patients, my heart rate would climb appropriately during exercise, but fail to return to a resting rate following the conclusion of exercise. After completing moderate exercise on an exercise bike, even after lying on my back for an hour, my heart rate was still inappropriately high and erratic. Essentially, once my sympathetic nervous system kicks in, my parasympathetic nervous system fails to activate. It doesn’t tell my body’s myriad of components that the marathon is over, so to speak. All of this was confirmed with machine readouts. Dr. Baraniuk recently published a groundbreaking article on the results of the study I participated in on 10 November 2017, confirming a cerebrospinal fluid based method to differentiate between ME/CFS, sedentary controls, and the two types of Gulf War Illness patients he identified. In essence he proved these are real, physical ailments with physical markers in the body, in spite of the ongoing skepticism of the public and some doctors. (Who obviously aren’t very read up/up-to-date on the growing body of real research into ME/CFS by neurologists and rheumatologists, the only specialists who have any business publishing articles on this disease).
I should note that Dr. Baraniuk’s study involved the use of multiple fMRI scans of the brain. Unfortunately, as I was participating as part of a research study vice a patient receiving diagnosis/treatment, I did not receive my individual results of the fMRI scans I undertook–but I do know what the START Group of GWI patients’ scans looked like on average compared with the STOPP Group of GWI patients’ scans as well as healthy controls’ scans, so I have a pretty good idea of what my brain’s electrical activity looks like following my body undergoing physical exertion.
I returned from Georgetown less concerned that I might be a hypochondriac, a concern Dr. Lizotte had repeatedly reassured me was not the case, but every treatment option my physician attempted with me was an abject failure (sadly, the norm, rather than the exception, with my diagnoses). Opioids, unfortunately, are the only medication that have had any positive effect on my Fibromyalgia pain, allowing me some level of functionality. Clonazepam, an anti-anxiety medication, is the only medication that has allowed me to sleep through most of the night, most nights. My sleep is still very unrefreshing and I wake up feeling exhausted, and take a while to fully “wake up,” but at least on Clonazepam I don’t wake 3-4 times during the night or lie awake in bed for hours at a time in the middle of the night…most nights. If I’m particularly stressed or anxious about something, I still have my occasional “bad night.” I should note that as the disability evaluation process through the military (whether to keep me or force me out for medical reasons) dragged on, increasing anxiety led to the occasional anxiety attack (chest pain, knot and butterflies in the stomach, freezing in a flight-or-fight panic), which I also found Clonazepam effective at combating.
Concerned about my decreasing ability to concentrate, forgetfulness, and “mental fog,” my physician referred me for a neuropsychological assessment. That was conducted in March 2017. The university neuropsychologist found that my sustained attention was impaired, as was my confrontation naming and my dominant (right) hand motor dexterity and grip strength. Subjectively, I had felt myself “slipping” gradually since 2015, and finding it increasingly difficult to concentrate or filter out distractions. My pain and over all fatigue (by far the worst of my symptoms—the constant, unbearable fatigue) had also been getting gradually worse since I started noticing them in 2015. Looking back now, I can see that even in 2014, I was starting to become symptomatic, but if you’re familiar with “the spoon theory,” I had a lot more spoons to start each day with in 2014 than I do today. Back then, I could get through a full day’s work before finding it difficult to concentrate or filter out extraneous stimuli. Now, I am at best “productive” for a few hours out of each day.
Still not to be daunted in the search for objective evidence that explained my subjective symptoms/complaints, I had a Positron Emission Tomography – Computed Tomography (PET/CT) scan done of my brain in August 2017, using F-18 FDG as the radioactive tracer to measure brain metabolism. The “report” from the reviewing Nuclear Medicine physician stated that all areas of my brain were “normal. No significant hypometabolism.” Thankfully, I obtained a copy of the CD with the brain scan images and gave it to my physician, Dr. Lizotte (who happens to be Boarded in Nuclear Medicine), to review. Even I could see from several of the slides contained on the CD and flagged by the technician that my scan was not normal—my Cerebellum, Pontine Tegmentum, Hippocampus, and Amygdala all exhibited hypometabolism—the worst hypometabolism occurring in my Hippocampus (not surprising since this regulates the Autonomic Nervous System and I have a form of Dysautonomia, POTS). In my Amygdala and Hippocampus, my hypometabolism was more than 2 standard deviations from healthy controls—in other words, significant. Dr. Lizotte wrote up his own review of my Brain PET/CT scan noting these abnormalities. He wrote:
“Here to review his symptoms, complaints, and recent PET of brain.
“First, the PET of brain was read as normal. I disagree; by looking at [the] images I see various areas of hypoperfusion in the entorhinal cortex, white and gray matter consistent with his symptoms. There is also hypoperfusion in the region of the hypothalamus which is in part related to homeostasis and could cause his disabling POTS syndrome.
“The areas in the cortex including temporoparietal region could lead to memory difficulties.
“If one examines his brain compared with normals in some areas he is more than 2 standard deviations from normal.”
Once again, had I not been fortunate enough to find an excellent PCP (GP), who knows where I would be now. Probably still wondering why I feel so prematurely old and generally just awful, yet no closer to finding any answers. The vast majority of the millions of ME/CFS sufferers are undiagnosed. It may bear mentioning that Dr. Lizotte, the physician who did so much for me, ghostwrote a paper on Gulf War Illness back in the 1990s in which he reviewed numerous brain PET scans and noticed a pattern of hypoperfusion similar to mine. Again, what are the odds I would be so fortunate regarding my insurance-assigned PCP (GP) upon my move southeast from Los Angeles?
So, in summary, I underwent a plethora of tests, probably far more than most patients, but the only testing that showed anything “abnormal” about me or even remotely accounted for my disabling symptoms/illness was:
- Neuropsychological Evaluation/Testing
- Brain PET/CT Scan (once read by a physician trained in Nuclear Medicine who was looking for something other than Alzheimer’s or Parkinson’s disease patterns)
- Autonomic Nervous System and Respiration (ANSAR) testing, both for showing heart rate spikes in response to postural changes (a tilt table test, more old-fashioned, would likewise have gotten the job done for demonstrating objectively that I have POTS) and to show the failure of my parasympathetic nervous system to do its job following even mild exercise
- Brain fMRI Scan (inferred; I never received my individual results nor is this considered “diagnostic” for either ME/CFS or Gulf War Illness, but it does show objectively that the brain activity of these sufferers differs from that of healthy controls or those afflicted by other illnesses such as Major Depression)
- Dolorimetry Testing (the old, but more “objective,” method of testing for Fibromyalgia utilizing a trigger/tender points analysis, although it still relies on the patient’s subjective evaluation of pain; in my case, interestingly, dolorimetry before and after exercise showed that exercise increases my sensitivity to pain, whereas in healthy people exercise temporarily decreases their sensitivity to pain–another interesting clue to my nervous system not behaving as it should)
- Sleep Study, which showed reduced sleep efficiency, delayed onset of REM sleep, and sleep fragmentation and architectural disruption
Given the dearth of “objective” tests available to diagnose ME/CFS, Fibromyalgia, or Gulf War Illness, my advice to anyone in my shoes (their symptoms suggest one or all of these chronic diseases, but all labs keep coming back normal) is to “doctor shop” for an expert like Dr. Lizotte or Dr. Baraniuk if at all possible and get evaluated by someone who knows what s/he is looking for. The average physician or even rheumatologist will probably miss the diagnoses or worse, accuse you of faking your illness.
In addition to Dr. Baraniuk at Georgetown University, there is a research team led by Dr. Montoya at Stanford University that has been aggressively researching ME/CFS as a physical disease as well. They seem to have obtained some promising results using Diffusion Tensor Imaging, a special kind of MRI. (Again, a “standard” MRI will miss ME/CFS, but fMRI or DTI, or even a PET/CT read by someone who will note abnormalities and not just dismiss the results if the “pattern” of brain damage/hypometabolism/abnormal activity does not match one of the common diagnoses that particular radiologist or nuclear medicine specialist is trained to look for, will show something physically wrong with the brain). Additionally, Dr. Ron Davis, also of Stanford University, is doing some very promising research involving a nanoneedle invented by one of his students. Moreover, Dr. Nancy Klimas, of the Institute for Neuro Immune Medicine at Nova Southeastern University, has been another pioneer in both ME/CFS and Gulf War Illness research.
If you can’t find a doctor who knows a thing about ME/CFS, but suspect you might have it based on debilitating symptoms and “normal” blood tests for “the usual suspect” illnesses, try to find research-focused specialists who take ME/CFS seriously as a physical ailment and have an open study you can participate in. Before you can participate, they’ll screen you to confirm your diagnosis, which for many patients will be a very helpful thing in and of itself, aside from the good deed of helping to advance the poorly lagging science regarding our diseases. I for one plan to participate in as many studies as will have me, and donate my brain when I die assuming the mysteries of this disease haven’t been solved by that time. (Which I certainly hope they will be–I’ve presumably got many years left to live, and I’d rather not spend them bed or house bound and living in a confused daze of brain fog).
Since I was a child, it has always been my dream to write, and publish a fiction novel. My illness, coupled with my neuropsychological assessment and Brain PET/CT scan, freaked me out and pushed me to write two novels in a short amount of time. I was quite frankly afraid that I would soon lose the cognitive ability to write a coherent novel, and although the cost in spoons to write was high, it was very important to me to write while I could. My career as an attorney and military officer was collapsing before my eyes as I became increasingly unable to do my job, even after being placed on reduced (part time) working hours with telework one day a week. I also entered the Medical Evaluation Board process so the Air Force could determine whether I was “fit” for continued military service or whether I should be medically separated or retired for disability.
On 19 December 2017 I finally received the results of my Informal Physical Evaluation Board (IPEB–I had been undergoing some form of either monitoring or Medical Evaluation Board since April 2016 so this was by no means a “fast” process): the Air Force found my Chronic Fatigue Syndrome and Fibromyalgia service unfitting, and proposed to medically retire me with an 80% disability rating (75% is the maximum allowable multiplier for a US military pension). The VA, on the other hand, rated all of my service-connected disabilities, and proposed a 100% disability rating. Because the Air Force initially proposed to place me on the Temporary Disability Retired List (TDRL) for my lifelong, incurable illnesses, which would have resulted in 3 years of uncertainty and the threat of the Air Force “changing its mind,” I appealed the IPEB’s results and the Formal Physical Evaluation Board (FPEB) agreed with my appeal and an excellent letter written by Dr. Lizotte on my behalf that I should be Permanently Retired and my ratings on the Air Force side at least set in stone. I received my Permanent Retirement orders from the Air Force on 26 February 2018, with a retirement date of 28 May 2018. Since I had over 70 days of annual leave (holiday/vacation time) accumulated at that point, I requested a “final out” date of 16 March 2018 and to spend the time between 19 March 2018 and 28 May 2018 on “terminal leave,” functionally retired but still in a pre-retirement, active duty military pay status. I left work on Friday, 16 March 2018, went home, and took off my uniform for the last time–a strange feeling to be sure.
I should note that although my Air Force chain-of-command was very understanding about and sympathetic to my disability, and my experience with the Department of Veterans Affairs was far better than many horror stories posted on the Internet, in spite of the voluminous medical records (over 1,000 pages) I provided from specialists, the VA still insisted on doing its own exams (and labs) to confirm yet again my diagnoses. Part of the reason is that the VA is still using the 1990 ACR Fibromyalgia criteria—yes, you heard that right—the diagnostic criteria were modified in 2010 and again in 2011, and in 2017 the Department of Veterans Affairs was still using criteria that were 7 years out of date, and developed nearly 30 years ago. Surprise, surprise, for the fifth time I was diagnosed with Fibromyalgia (sixth if you count the opinion of the Ph.D. neuropsychologist who reviewed my neuropsychological assessment and wrote the report). No matter what criteria doctors use, I always come back positive for Fibromyalgia. The VA also has its own definition of “CFS” (see §4.88a Chronic fatigue syndrome or word search for it) that is more restrictive than any medically accepted/published diagnostic criteria for ME/CFS, and includes the requirement that “all other clinical conditions that may produce similar symptoms” be excluded as a possible cause for the VA’s listed symptoms. They seemingly really don’t want to diagnose anyone with ME/CFS, much less pay out disability benefits for it. Fortunately, I was yet again diagnosed with ME/CFS, even using the VA’s custom and more restrictive diagnostic criteria.
My career was imploding even before I received my Board results mandating my retirement, my self confidence was at an all-time low, and I wondered at what point I would descend into dementia or even if not, lose the ability to write. I also felt like a failure as a husband and father. Even as recently as 2016, I could still play video games with my children—now I cannot do that for more than a few minutes during a “good period” on a “good day.” It’s simply too stimulating/bewildering/overwhelming for me. I can still watch TV or movies (with closed captioning turned on), and I can still read fiction books, again during “good periods” on “good days,” but heady reading leaves me feeling lightheaded and exhausted. It costs too much brain bandwidth that I simply don’t have. I have also found myself increasingly impacted by a breakdown of the “cocktail party effect”: it’s difficult for me to follow an individual’s voice against a noisy background, or focus on a single conversation when a second conversation is going on in the background. I was told by a VA examiner that I might have Central Auditory Processing Disorder although I’ve yet to be tested for it.
I decided to indulge my childhood dream of writing, no matter how many spoons it cost me, so that’s exactly what I did. It was exhausting and I had to go back over what I had previously written numerous times because I kept forgetting my own plot points, but it brought me joy escaping to an imaginary, internal world of my own creation as the “real world” became an increasingly depressing place to exist. I sincerely hope others enjoy reading what I wrote. It was a sacrifice but one I do not regret.
A DAY IN THE LIFE
What is life like with this illness? Well, as of April 2018, as has been the case for over 2 years, sleep makes me feel worse. I wake up each morning exhausted, with a headache, eye ache, cheek/facial pain, and extremely “foggy” feeling. It’s somewhat like being hung over. I don’t know whether that is an ME/CFS symptom or due to blood pooling from my POTS. Suffice to say, I’m sluggish and it takes me a couple hours to fully wake up. In the evening, too, or earlier if I have a physically, mentally, or emotionally exerting day (a single hour-long meeting in which I am rendering advice or recommendations is enough to make a day “exerting”), I get so exhausted I can hardly hold a one-on-one conversation, and become involuntarily irritable, a probable byproduct of anxiety. Eventually my only choice is to lie down in the dark because keeping my eyes open takes too much effort and hurts too much. I cannot stand or walk for prolonged periods of time. Standing for more than a few minutes is extremely exhausting. The last time I went to DisneyLand, in December 2017, I had to use a cane in order to keep my balance. That didn’t stop me from feeling extremely exhausted or needing frequent sitting breaks, of course, but at least I didn’t stumble, fall, or otherwise make too big a fool of myself. Extra doses of pain medication were likewise a must, and for days following this “exertion” I was very low on spoons. Still, these are the things we do for our families to show we love them.
Sometimes a single day feels like an eternity compartmentalized. I will say or do something in the morning that by afternoon feels like it happened days, weeks, or months ago, or happened in a dream rather than real life. I wonder if others feel that way or if this is a normal part of the “mental fog” so commonly reported with ME/CFS and Fibromyalgia. I would not wish my conditions on my worst enemy. I also sometimes worry that I’ve said, or will say, something that a friend or family member will take offense to or judge that I have crossed the lines of propriety by speaking too freely. Again, sometimes the “brain fog,” “mental fog,” or whatever you want to call my cognitive deficits, confuses me and makes things around me feel unreal and dreamlike. I don’t intend to offend, if that’s any comfort, and half the time I can’t even remember what I said. I joke with my children that I’m like Dory from Finding Nemo–my short-term memory is no good. Thankfully my long-term memory seems to be pretty much intact.
It was my illness, actually, and not my Roman Catholic religion, that convinced me of the existence of souls. You see, my body, to include my brain, feels like a damaged shell providing distorted filters and a fog that obscures reality. It’s rather like driving around in a totaled car, cracked windshield and all. I feel very clearly that “I” am still inside and still me…it’s just that my outer shell is damaged. I’m trapped inside my sick body. I am not this sick body or shell of the person I used to be. I am me, and I am unbroken, undistorted, and unstained. In other words, I have a soul, and I am a soul. It’s the body I’m inhabiting that’s the problem. That belief gives me comfort, knowing that “I” am still in here somewhere. Recently I’ve begun doing a meditation that involves focusing on my soul and the spiritual energy around me, and that provides immense comfort and a temporary reprieve from my perception of being trapped inside a broken body.
My ME/CFS affects me worse than my Fibromyalgia. Both are debilitating, but I could put up with more pain to be free of this concentration-destroying, all-consuming fatigue. I’m not just “tired”—I feel like a person with a severe flu or other illness that leaves them unable to function normally. I’ve gotten reasonably good at “faking it,” smiling for people, pretending that I am normal (because my illnesses are all “invisible” after all), because it’s just too much trouble to try explaining that I’m not all right to the average person. To those I’ve let in, you’re welcome. It takes a lot of effort to try to explain how I feel, and I’m not convinced anyone who doesn’t have what I have can truly understand it. Cold makes my knees and shoulders really achy, and increases my joint and back pain in general. I do not handle cold well at all. Thankfully I live in Southern California, but even here the nights and early mornings are a bit much for me. My hands and feet are often quite cold to the touch as well, so it’s not just perception. I wonder how I would do in a sauna or hot bath, since I’ve heard heat can also be hard on Fibromyalgia patients. I will have to give both a try at some point, because I feel like the heat would do me some good!
It is in my nature not to say “I can’t” but to push through until I collapse. I have undoubtedly made myself worse by trying to push through rather than set reasonable limitations on myself in light of my condition. The new “me” is not an easy person to live with and I stubbornly resist accepting what is rather than wishing my life was still the same as it was like only a few years ago. I’ve not yet completed the “stages of grief,” or rather every time I think I’ve progressed to acceptance, I go back and start over again.
Another interesting aside (like most of my illness observations—not something that will lead to an effective treatment) is that my personality has changed as a result of my illness. On 6 October 2014, as part of a Professional Military Education course, I took a Myers-Briggs Assessment. My results were ESFP: Extrovert (1%) Sensing (1%) Feeling (25%) Perceiving (22%). As you can see, I was right on the fence between Introvert and Extrovert, and between Sensing and Intuitive. I retook the same Myers Briggs test on 9 September 2016. My results were INFP: Introvert (34%) Intuitive (34%) Feeling (59%) Perceiving (3%). In approximately 2 years’ time, which just so happened to be a period of illness progression, I went from slightly Extroverted to definitely Introverted, from slightly Sensing to definitely Intuitive, and from definitely Perceiving to slightly Perceiving but closer to Judging. A pop psychologist (OK, me) might interpret this as a retreat inward as my ability to deal with external stimuli decreased and I began needing more structure and predictability to get through my days (while at the same time living less in the “here and now” and focusing/worrying more about the future).
Here is some “recommended reading” that I’ve found relevant to my illness and perhaps helpful for others to understand why I act the way I do:
The Spoon Theory, by Christine Miserandino
I’m a Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew, by Amy Stenehjem, MD
Losing a Beloved Career to a Chronic Illness: Caroline’s ME/CFS Story, by Caroline Christian
And I’d be remiss if I didn’t recommend Jen Brea’s Unrest film for viewing! I was deeply moved when I saw it for myself, and had to try very hard not to cry too much watching it with my children. (Who were awesome and had a wonderful conversation with me about my illness after seeing the film). Actually, in a weird way I felt guilty and lucky at the same time after watching Unrest, because I’m not yet housebound, much less bedbound. I hope and pray I don’t worsen to that point. I may not be able to do much, but at least I can sit outside and bask in the beautiful nature around me. (Preferably out of the sun, since bright light bothers me). I can also go for a short drive if it’s the middle of the day, or let friends/family drive me places most of the time. Still, experiences such as going to Sunday Mass are stressful, as I find myself frequently lightheaded by all of the transitions between sitting, standing, and kneeling! When I’ve had enough I just sit, and if other parishioners think I’m being disrespectful, they can go ahead and judge me because I have physical limitations I must obey or else suffer the consequences (stumbling or falling).
For those who think Fibromyalgia and ME/CFS are “fake illnesses” or psychiatric conditions, I would simply point to my abnormal brain PET/CT scan, neuropsychological assessment, exercise stress and ANSAR testing from Georgetown, and other objective evidence that these diseases are very real, physical, and very disabling. I have heard the degree of disability caused by my conditions is comparable to Lupus or Multiple Sclerosis—I haven’t had either condition so I cannot say whether they are truly “comparable” or not—but it is clear that ME/CFS and Fibromyalgia are very disabling and need to start being taken seriously by both the medical community and disability claims administrators. And for those naysayers who don’t believe these are “real” physical diseases, but rather “in the patients’ heads,” I would point to this recent article that basically proves they are real, and they are physical diseases:
I should add as a footnote, though, that I truly believe mental illnesses are unfairly stigmatized, and that they should be treated no differently from physical illnesses. They’re obviously equally disabling and just because my primary illnesses are “physical” does not mean they should be placed on a pedestal above mental illnesses–all illnesses are important, and making jokes or even just making light of mental illnesses is not OK in my mind. Besides, as we learn more about the human brain, which we know precious little about, we’re finding organic causes for a lot of “mental illnesses”–further blurring the lines between “physical” and “mental” illnesses. My point being, it shouldn’t matter how one categorizes a disabling illness. It is a serious matter and the patient deserves help and compassion from doctors and carers, and understanding from peers.
I don’t know what the future holds. I know that my life has forever changed–my military career is over as I’ve been involuntarily retired for disability. It was not fun nor what I wanted, but realistically, doing my job, even part time, was slowly killing me, and being able to count on even a much-reduced pension check is a lot more than many unfortunate spoonies are left to face. I have the prospect of maintaining a home for my family, and either seeking part-time, from home work that is within my ability to do (I hope), or to apply for additional disability benefits based on my 100% Department of Veterans Affairs disability rating if I prove incapable of even part-time work.
I hope to do more writing. I will likely do some blogging and stay active on Twitter. I befriended some very courageous ME/CFS and Fibromyalgia warriors in the UK who were willing to not only “go public” with their illnesses, often to ridicule by Internet trolls, but who are trying to help their fellow sufferers and ensure fairer treatment by the DWP. My circle of Twitter friends then expanded beyond the British Isles and North America to Sweden and Germany as well! I’m delighted!! Inspired by my friends’ examples, I would like to get involved in advocacy/activism and promote understanding, empathy, and more research for my conditions (and all “invisible illnesses”), not to mention encourage the US and allied militaries to take preventive measures to protect future service members from being likewise afflicted. I don’t believe it’s an accident that among the civilian population, ME/CFS and Fibromyalgia predominantly afflict women, whereas within the combat zone deployed military population there are a number of men sharing these diagnoses.
An estimated ¼ to ⅓ of all Persian Gulf War veterans have similar physical ailments to mine. By some accounts, the numbers could be similar for Afghanistan and Iraq war veterans. I heard, through my Air Force provided disability attorney, that in spite of the medical literature and public statements by the VA and more importantly, researchers at prestigious university hospitals, linking illnesses such as mine to “toxic exposures” on the battlefield, “no one” gets an “instrumentality of war” designation on his/her medical retirement paperwork from the military. Likewise, they label my condition ME/CFS + Fibromyalgia rather than call it “Gulf War Illness” because to do so would be to admit that we’ve victimized our own with “friendly fire.”
In my view, there is an urgent need to acknowledge the “toxic exposures” issue and work to protect our armed forces members from suffering a similar fate due to future wars/deployments. We have it in our power to avoid making them sick—if we can figure out what precisely made us all sick in the first place. Pesticides and burn pits are the two leading hypotheses. I cannot fathom currently healthy and fit service members developing the same illness as me due to a failure to limit their exposure to toxic substances while deployed. It’s a preventable tragedy. I also can’t help but wonder whether similar exposures have caused similar illnesses among civilians back home–look at all of the pesticides used in agriculture and preservatives added to foods.
I am hoping to participate in studies, primarily in neurology, I think, aimed at getting to the root cause of my illness(es). I would like to repeat my PET/CT scan of the brain, only instead of using the standard F-18 FDG (essentially, glucose) radioactive tracer that measures brain metabolism, I’d like to use 1-[11C]methylpiperidin-4-yl propionate ([11C]PMP) as the radioactive tracer, as it allows estimates of acetylcholine (AChE) activity in regions of moderate to high AChE levels. I was told Diffusion Tensor Imaging might be out for me because I have chronic migraines, which cause “noise” on a DTI scan due to alteration of white matter tracts, but I had a Diffusion Tensor MRI performed in late 2018, that didn’t really find anything of clinical significance, but noted the following:
“39 structures were measured and compared to a normative population of healthy individuals with the same imaging parameters. Given the number of structures measured, just by statistical probability there are structures which are significantly above and below the mean. No specific pattern or region of abnormalities is identified.”
One of the leading hypotheses behind my illness is that a dysfunction of the cholinergic system is in play, and the brain is unable to clean up harmful, excess amounts of acetylcholine.
In 2018, I underwent genetic testing on my own dime to have my RNA sequenced to determine which variant of the rs17228616 RNA allele I have, the more common G:G variant that is hypothesized to protect against low-dose neurotoxin exposures, or the less common G:T variant that just so happens to occur in about the same percentage of the population as the percentage of veterans estimated to have Gulf War Illness. That variant supposedly offers less protection against neurotoxin exposures, so the brain cannot repair itself faster than the damage accumulates from long-term, low dose pesticide exposures. I had the G:G variant that theoretically should have protected me against low-dose neurotoxin exposures, so I would consider the genetic testing to be a “negative finding,” but perhaps ruling out a potential cause, at least in my case, is useful from a research perspective.
Both of the above tests, on my brain and RNA, would have either lent credence to, or refuted, the cholinergic theory of Gulf War Illness (and possibly ME/CFS as well), in my mind. Because first understanding the root cause of the disease is essential to developing an effective treatment, I am definitely willing to be a guinea pig if a doctor or biohacker is willing to try to solve this.
Another thing I’ve recently done is begun advocating for a legal change in the United States that would greatly benefit disabled military retirees. I started a Petition here urging The House and Senate Armed Services Committees to stop penalizing disabled retirees from the military like myself, who must choose between receiving VA disability compensation and receiving our military pensions. Being able to receive both, which are completely separate benefits based on completely separate rationales, would make a world of difference to many retired military members, especially those who cannot find and maintain meaningful employment due to our service-connected disabilities.
In closing, I want to maintain a sense of meaning in my life, and feeling of self-worth. I’ve had to reevaluate how I view myself and my role in the world. Hopefully faith, family, and friends will lead me down a brighter path than what was a pretty dark 2017 and 2018. I’m happy to report that so far, 2019 has been much brighter (from a spiritual and mental health perspective), even if physically I feel no significant improvement.
UPDATE (11 June 2018): As noted in a recent blog post, I got my RNA sequencing results back and it turns out I possess the common, “protective,” G;G rs17228616 allele. So I do not appear to have been genetically predisposed to get sick by deploying to Afghanistan. As far as I can tell, my illness stems 100% from some type of exposure, not bad genes making me more susceptible to neurological and immune dysfunction.
UPDATE (24 April 2019): My neurologist ordered auto-immune testing pertaining to my POTS and ME/CFS (or GWI), and I just got the results back. They are very interesting, and show significant auto-immunity at play. I tested positive for the following auto-antibodies:
– anti-AT1R Antibodies
– anti-ETAR Antibodies
– anti-α1-Adrenergic Antibodies
– anti-Muscarinic Cholinergic Receptor 2 Antibodies
Additionally, I tested “at risk” (in the equivocal range above the lab’s “negative” cutoff but below its “positive” cutoff) for:
– anti-β-2-Adrenergic Antibodies
– anti-Muscarinic Cholinergic Receptor 3 Antibodies
That’s a pretty significant-looking immune system attack on my Central Nervous System, and vindicates, in my mind, the fact that my illness is anything but “made up” or “psychosomatic.” In my case, it’s auto-immune, and my body is literally fighting a war with itself on the inside.
Interestingly, I also tested positive, through testing conducted by the Department of Veterans Affairs, for F-Actin (Smooth Muscle) Antibody (IgG), but a liver biopsy has yet to reveal a definitive diagnosis. (Although autoimmune hepatitis, primary biliary cholangitis, and primary sclerosing cholangitis are all suspects given my auto-immune test results for F-Actin, and elevated ALT and AST levels in testing conducted in January 2019). It would seem that I have significant auto-immunity in my body, and that most if not all of my symptoms can probably be accounted for based on this autoimmunity. I do not wish to get my hopes up, but perhaps with the right immunosuppressant medication(s), I may experience at least a partial recovery. That would be incredible.
Given that I’ve had not one, but two sinus surgeries, the second quite extensive at that, yet have ongoing chronic sinusitis (noted on an MRI last year), I would like to be tested for a possible auto-immune condition that can cause sinus issues as well.
Bottom line health-wise: my illnesses remain mysterious, but research is moving forward, and personally I’ve had recent blood test results that show a lot of autoimmunity in my body. My illnesses are clearly physical, not mental, and might even be treatable by suppressing parts of my immune system.