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Searching for answers to a complex case + debilitating illness
First, please let me apologise for such a long message. We are desperate to get to the bottom of what has been a horrific and long, debilitating illness, that has robbed my 34-year-old partner, Ben, of any life. I am aware this is a complex case that is still ongoing, and hope the following summary will at least help get you up to speed! If anyone makes it as far as reading to the end of this (or even part-way through) and it rings loads of bells, please let me know!
In October 2019, Ben, his brother and I came down with the nastiest flu-like illness we'd ever had, which lasted around three weeks. Ben had a fever and chesty cough, and was completely wiped out. Although his brother and I recovered, Ben instead went on to feel permanently extremely unwell and developed blurry unfocused vision, considerable photosensitivity and sinusitis. He had a permanent blocked nose, with it being particularly hard to breathe through the left side, and a new feeling of pressure and swelling – sometimes sharp pains/burning – in his head and the front of his face, including pain in his temples, behind the eyes and on the top of his head. He also suddenly had an extremely stiff neck, which nothing would relieve, as well as intermittent numbness and tingling down his left arm and hands, and at the back of his head and neck. He developed severe chronic fatigue, severe insomnia and disturbing nightmares. Added to this, he would get a sudden panic-inducing falling feeling, either when trying to sleep or waking him from sleep, as well as very bright lights behind his eyes (particularly the left eye) when he closed them, which would stop him falling asleep for hours.
Most scary of all were the new neurological symptoms he suddenly had, that were unlike anything he had experienced before. He felt permanently unstable and strange, and had a new, constant brain fog, with trouble remembering words and short-term memory loss. He would have periods of much greater intensity, sometimes lasting whole days. Since mid-October he had been basically house-bound, but many days he would be completely bed-ridden, and would find it so hard to balance that he had to hang on to furniture to walk around (as if he had been spiked with something), he would be on the brink of losing consciousness, and if he could walk then it would take minutes to walk the few metres from his bedroom to the bathroom. Throughout November, December and January, these episodes got more frequent and constant, to the point where he was having these debilitating symptoms round the clock and was unable to do anything but try and cope with the symptoms day and night. He frequently recorded his heart rate and blood pressure, and by the beginning of February these would vary hugely within fifteen minutes while doing nothing, sitting down.
Having had his usual olive skin with a holiday tan before the illness in October, afterwards he had a permanently pallid, sickly complexion, and intermittently went sheet white – this usually being accompanied by episodes of his neurological symptoms in greater intensity. He also lost a lot of weight and couldn't seem to put it back on, and got rashes spreading across his body and face. Having previously been a daily smoker of tobacco and hash, he suddenly found that he couldn't inhale any smoke without it bringing on a more intense bout of his neurological symptoms, and he immediately had to quit smoking altogether. Other strange symptoms that developed after the October illness included intermittent tremors, a sensation of fullness in his ears and difficulty equalising, a feeling and sound of pulsing in his left ear, occasional ringing in his ears and a crunching noise in his eyes (when moving his head but keeping his eyes forwards), as well as being constantly thirsty and very frequently needing to pee.
Prior to October, he was used to dealing with a lot of stress, but nothing prepared him for the new physical anxiety and panic that accompanied the onset of all these other new symptoms. For months he was trying to suppress multiple panic attacks a day/night, and was now finding it very hard to regulate his mood, which was swinging dramatically.
Although he has worked hard to regain some physical fitness and strength over the past three months, and his balance in particular has improved a lot, he is still permanently unwell and has a few worse days a week (where he feels awful, his head feels strange, his vision is blurred/unfocused and he feels unsteady). Intermittently he will have much more severe episodes, where he needs to lie down, and his head and vision are really bad – sometimes so bad that he can't see clearly and he's on the brink of losing consciousness. He also still has a blockage in his sinus and sinusitis symptoms, and severe problems with insomnia and problems with his mood.
Between November and late March he has had (in chronological order): autonomic nervous system testing; an MRI brain scan without contrast; CT head scan; blood tests; an EEG; MRI scan of abdomen and pelvis; CT chest scan; an upright MRI of craniocervical junction and cervical spine; more blood tests; an ECG; an overnight sleep apnea monitor; a DEXA isotope bone scan; an eye examination; a nuclear medicine isotope bone scan; more blood tests and a urine test; a flexible nasopharyngoscopy; RAST allergy tests and IgE level; skin biopsies on an abnormal skin mark and abnormal lump; an MRI brain scan with contrast and serology tests.
The only abnormalities found in his brain were a deep venous anomaly and his pituitary gland appearing slightly fall, with flattening of the superior margin – but these were deemed within normal limits.
He has been found to be hypermobile (EDS-HT) and have osteopenia, as well as 'possible active synovitis/inflammation' in several small joints of his hands, wrists and patellofemoral junctions. Blood tests found him to have slightly high homocysteine levels (14.1 – normal range being 0–12) and to test positive for anti-smooth muscle antibodies (1:80 – normal range being 1–1/40).
He has mucosal thickening of the maxillary sinus and some disease of the ethmoid sinus, as well as left-sided nasal septum deviation and bilateral turbinate hypertrophy. The serology tests were looking for rodent-spread illnesses amongst others (due to a rat infestation in the house he was staying in, in Oct 2019, following years of problems with mice), and found that he had an abnormally high Aspergillus Niger IgG level (28.3mg/l – normal range being 0–24).
Because of this last finding (in conjunction with the allergy tests being clear), fungal sinusitis is now suspected, and he has been taking 100mg Itraconazole twice a day for the last few weeks. He is also taking 10mg Escitalopram for anxiety, and Clonazepam and Circadin for insomnia, as well as a long list of supplements and vitamins.
He still has crippling insomnia, chronic fatigue and if anything he feels more unwell since starting taking the Itraconazole, and is still waiting for the Covid situation to allow him to have the sinus biopsy that will hopefully identify if the fungal infection is in his sinus (and whether he should continue taking anti-fungals and have the infected tissue removed).
Worst of all, a lot of his symptoms (e.g. his neurological and visual symptoms) are still not properly explained. His virologist and general doctor feels he may have had meningitis, but thought it would be a very severe bout to still be causing these problems. He is still due to have a lumbar puncture, a heavy metals toxicity test and gastrointestinal endoscopic biopsy (to rule out Whipple's disease) as soon as hospitals open up enough.
We just want to get to the bottom of the cause of his illness and symptoms, and make sure that he is getting the right treatment, so he and we can get past this. If anyone has any suggestions or thoughts, we would be hugely grateful to hear them.
Thanks and hope everyone's staying safe and coping OK out there!
Thanks and hope everyone's staying safe and coping OK out there!
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