Would my blood be the answer to all the problems I’m experiencing? Are blood clots connecting the dots to heal from Long Covid?

Let’s start with a sum up: (I might change it later because summarizing is one of the hardest things suffering Long Covid, because memorizing my thoughts and memory, has functioned differently ever since.)

  • I fell because the feeling in my right leg had disappeared. Now I realize why the two women who found me reacted hysterically and wanted to call an ambulance—the look on the doctor’s face in Prague…
  • I had thinners from the doctor in Prague because I have FVL. My GP and a doctor in the hospital told me to stop. Unfortunately, I got thrombosis for the third time.
  • Just after the diagnosis, I had massive and frightening menstrual bleeding using DOAC’s. A change of meds (Acenocoumarol) followed this.
  • Heavier menstrual bleedings and changed periods ever since. Sometimes with a lot, of big clots like after giving birth. 
  • Pain in my chest, headaches for no reason, and palpitations. My GP and Haematologist told me it was stress, without further examination.
  • An INR that the Thrombosis service couldn’t get stable.
  • Immense pain in my calf (September 2020), diagnosed as PTS (March 2021)
  • A strange feeling in my head (November 2020), like a balloon, snapped and fluid came out, followed by an enormous headache and hours of sleep. My GP gave me a prescription to see a Neurologist 2 months later. So I didn’t worry.
  • A few days before Christmas 2020. Backpain was so severe I was at an angle of 90 degrees, not able to move. Heavy painkillers and in bed for two weeks. The third week when I was phasing out on the meds, I was feeling sick. Headaches, fever, feeling like I got the flu. I couldn’t test, because I was positive in November 2020. And it also could have been the meds.
  • Brain fog got worse, see the symptoms in the list below.
  • Again more often, pain in my chest, headaches for no reason, and palpitations. (March-May 2021) The rehab doctor refused to take a look at my lungs.
  • The lung specialist found Asthma (July 2021), and I got a prescription for Foster. The pain in my chest disappeared, so did the stuffiness I experienced during the night. Stuffiness was so heavy that it made me wonder each evening if I would wake up in the morning. It felt like 15 months before, so I thought it was stress.
  • A cold (September 2021), coughing up and sneezing blood for 5 days. It stopped, and because of my former experiences, I didn’t call a doctor. I wanted to mention this in the visit with the lung specialist (October 2021). Sadly, the conversation mainly went about the rehabilitation doctor I met in April 2021.
  • Chest pain (lungs/heart) is coming back after a small walk. I have to make stops in my daily walk from 2 km.

Is it possible that Covid-19 influences my blood, which causes the same effect as the AIDS virus is affecting my immune system? And does Covid-19 interfere with my blood functions? Are blood clots or a changed blood balance causing the fluctuation of symptoms? Has the virus changed my DNA?

  • visual problems; blurry vision, sometimes followed by a headache. I use reading glasses and if I don’t experience vision problems I can read without them.
  • problems with my hearing (tinnitus, helicopter sound in my ear, sometimes trouble hearing or sensitivity to sounds)
  • taste; sometimes it is back for a while, mostly it’s gone or in very light
  • smell; mostly gone, sometimes I smell phantom smells or it is misformed
  • loss of muscle power, not able to train in a continuous mode or walk for a ‘normal’ period of time
  • loss of feeling in limbs, falling down, letting things fall out of my hands
  • muscle pain, cramps
  • breathing (lungs), stuffiness and pain in my shoulders, or the feeling of a tight band squeezing my chest together
  • palpitations (heart), not all the time, can be in rest and after activity
  • dizziness standing in line/ standing still
  • digestion problems
  • menstrual problems, bleedings
  • headaches (never had them before Covid-19)
  • strange sensation in my head
  • increased sleep, tiredness, feeling like sleeping with my eyes open (like someone switched me off)
  • brain fog, trouble concentrating, and thinking (is better with tons of rest)
  • wordfinding problems, from going blank to trying to scrabble the words together, or using the wrong or non-existing words. In English and in my mother tongue.
  • being disoriented; losing my way, going the wrong way, being too late or too early, overwhelm in crowded places
  • overwhelm; getting lost in the supermarket getting overwhelmed by colors, products, people, and noises
  • not able to remember what I’ve read or have seen on television
  • not able to summarize or react to a text because the information comes in differently
  • trouble with overview; trouble putting things in a timeline, trouble filling in a form
  • planning my days is impossible, I enjoy the things that I can do within my abilities
  • no access to information that I usually had access to in my brain. I can’t bring things up and sometimes information comes up without reason.
  • Loss of hair and canker sores in my mouth (same when I was recovering from EBV when I was a teenager)
  • fevers when I am exhausted (only when I cross my boundaries)
  • I add more symptoms when I remember them.

We now live in August 2022, I am on an inflammatory diet and using supplements after listening to interviews/podcasts with Anthony William and Dr. Daniel G. Amen.
The first two patients with inflamed brains have been seen in Dutch research and Dr. Daniel G. Amen has seen over a hundred patients with inflamed brains. Let’s see if this brings me results… 🤞🏼

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DAPHNE IN STOCKINGS is a writer with a blog telling her story about surviving blood clots, living with FVL, blood thinners, and stockings. And coping with Covid-19 twice in 2020. She's telling her story about building resilience in a physical and mental struggle to heal.