By January of 2011, I was feeling very good and getting back to my 'old self'. We went on a family ski trip to Colorado in mid January. I was feeling great at the beginning of the trip but was beginning to experience digestive upset as we departed. I would learn a couple of months later that I had contracted three parasites - Blastocystis Hominus, Endolimax Nina, and Cryptosporidium.
I went through many, many symptoms in 2011, and my quest for a diagnosis began in earnest.
February 7-15, 2011
Towards very end of vacation, I am starting to feel slightly ill .. my digestion feels ‘off’, and I am getting fatigued and a little cranky .. my streak of ‘feeling great’ seems to be coming to end. I am wondering if the dye-free guaifenesin is causing the problem. I am also concerned about Lyrica. I call my rheumatologist’s office on 2/14 and ask to be lowered to Lyrica 50mg – I start taking lower dose that night. By Tuesday, the 15th, I’m definitely feeling ‘sick’.
February 16, 2011
I feel completely run down – very fatigued – I go to DwellSmart but have no energy at all and am exhausted just trying to complete a sentence.
February 17-20, 2011
A terrible headache sets in for four days. The headache is frontal area, both sides .. perhaps slightly stronger on right side. My headache seems to be causing nausea and all food and water tastes bad. I struggle to keep up my water intake and to eat bland foods (e.g. bananas, rice). I start to get dizzy and my vision increasingly gets blurry. I sleep a lot. I go to the doctor on Thursday (the 17th) and they do EKG, check my WBC, thyroid labs, etc. My doctor is taking this headache very seriously which comforts and scares me at the same time. I would later learn that a big headache can be a sign of an aneurism or another very serious matter. They do find my T3 is low, and my doctor prescribe a T3 supplement which I begin taking in March. My P.A. thinks I may be adjusting to a lower dose of Lyrica, and gives me anti-inflammatory shot (my Opthamologist thinks shots may have caused blurry vision).
On the 18th (Friday), I stop taking the guaifenesin. I sleep almost the entire day. My headache is still intense but not quite as bad as Thursday.
On Saturday, the 19th, the headache, nausea, and blurred vision are still bad so I go back to doctor. After discussion with doctor and rheumatologist office, I stop taking Lyrica. My doctor gives me another anti-inflammatory shot.
On Monday, the 21st, the headache seems to lift. I am still quite tired and run-down but mood is improved as well as appetite. My blurred vision is gone, and I am able to work some at computer.
Tuesday, Feb 22
I don’t sleep at all on Monday night. I seem to be somewhat manic. I lie in bed but don’t sleep. I may be having some hallucinations. My headache comes and goes with intensity. I get out of bed Tuesday and am uncharacteristically carefree. My friend and coworker Nanette calls and offers to take kids to school. She notices I’m acting a little strange. She comes and takes kids to school. I spend morning in unusual state and am tracking time but having trouble getting through any normal activities .. I don’t think I eat that day which is not like me at all. I buy coffee but do not consume – very unusual. I go to conferences at the school and am late. Nanette continues to note my strange behavior. I am supposed to go to DwellSmart, but I pick up my son’s playmate and we go back to my house to play. I begin to have what may be hallucinations and see visions in the concrete/driveway. I am beginning to act quite strange.
I play with the kids in the backyard and can still remember things .. I play with my son and his friend on the trampoline, and they say I was lying down while they were jumping. I begin to lose most memory of afternoon around 4pm or so.
Nanette sends her husband Mike to check on me, and he finds me rather manic and agitated and acting strange .. nice but strange. With Nanette on the way, he takes the kids to his house. Nanette comes over. I have very little memory after that until Thursday.
Nanette calls two neighbors/friends – Carol and Louise. They call an ambulance to take me to MUSC. My serum sodium is 117.
Wednesday, Feb 23
I don’t really remember this day. I have vivid and somewhat disturbing dreams / hallucinations.
I am in the hospital (for 5 days), and the doctors are running loads of lab tests and a head CT and brain MRI and spinal tap. I am having to be restrained, and fluids and food are withheld to get sodium back down.
Thursday, Feb 24
I ‘come to’ in the morning but am feeling quite foggy and disoriented, Doctors continue to run lots of tests including a chest/ab CT. My head/neck are in lots of pain when erect .. seems to be from Wednesday’s spinal tap. I resume eating and drinking on Thursday evening. Sodium reaches 130.
Friday, Feb 25
Doctors perform another spinal tap. Head/neck pain from spinal taps is very bad for 7 days, and I have to stay in reclined position most of the time.
Saturday, Feb 26
I am released from hospital about 6pm on a 1.5L fluid restriction.
I go to a followup appointment with Dr. Giglio, a neurologist oncologist, and he prescribes testing to rule out cancer – PET Scan, Paraneoplastic Antibody Panel, Mammogram, and Repeat MRI. My spinal tap issues start to let up later that day, and I spend a little time erect.
Mar 5 – 12
My spinal tap issues are improving, and I am able to walk, sit, etc. My buzzing, frontal headache is lessening over time but still present in very mild form. My balance seems off and energy levels down.
Mar 9 – 13
I am increasingly concerned about digestive challenges. Stomach/intestines seem irritated, and I am not as hungry as I should be. I am having troubles with constipation. Bleeding hemmorhoids and/or anal fissure present and losing some blood. Stools are dark. Body odor, breath, urine all smell off/bad. My energy level is quite low. I feel toxic (leaky gut?). I do stool tests and am positive for parasites.
I take anti-parasitic medication, and this helps.
Late Feb – Mar
My blood pressure us running much higher than usual. I tend to be 100 over 65 or so, but I’ve been running more like 135 over 75 or so.
Colonoscopy and Endoscopy – biopsies for celiac and other tests are negative.
Pet scan and Mammogram is ‘clean’.
Brain MRI looks same as one from hospital taken one month prior.
Dr. Kwon, endocrinologist, confirms that I now have Diabetes Insipidus; I start taking Desmopressin to manage/control.
My movement issues are returning – fibromyalgia? When I switch from sitting to standing or at other times, I feel like my body is a little inflexible, uncoordinated, and I need to stretch and hold on to things.
Brain MRI shows two lesions are better/gone, and there are two new lesions for 5 total.
Dr. Giglio is ready to rule out cancer due to the lack of 'advancement' in my brain MRI's. He sends me to an MS specialist who does not think I have MS. I am then sent to another neurologist on the suspicion of Neurosarcoidosis.
Headache begins to vary more in intensity, more pain on right/front side and as far as right temple.
August – December
I tried hard to forget about my mystery illness. It seemed to all start with the hyponatremia (low sodium) incident in February 2011. I would eventually determine that this was a crisis incident. It really started with the mold exposure starting in 2003. I was exposed to the toxic mold (contained in my mattress) until 2008. The mold started the problem and had it only been a year in the moldy rental house, I could have recovered, but with the ongoing exposure through the mattress, my body went into overload. The parasites contracted in January of 2011 set me up for the health crisis. And, the impacts began stacking up so I could no longer ignore the health situation.