Although I do not suffer from POTS proper (since if I stand up I do not go into severe tachycardia nor does my blood pressure drop noticeably) I certainly have a very limiting form of dysautonomia since I cannot stand still even for ten minutes .
February 22, 2018. Lying down between lactulose breath test readings at the Hospital of Padua, as I could not even sit still for 5 hours and there were no suitable chairs to keep my legs extended. YES is a form of dysautonomia often found in ME/CFS.
Exposure to the sun (one hour a day without UV sunscreen during spring and summer) also helps, gives me more energy and I feel better but I live in the humid and polluted Po Valley in northern Italy and in winter it is days and days before I see the sun. I know I can’t ask more from my body than it can give me, but….I’m getting worse every year. That “nap after lunch” has turned into “nap before lunch,” even eating healthy food (i.e. organic salad).
The worst thing about being sick is that even though I love being with other people, going out, taking a bike ride, having a party time with my favorite DJs ( I am a social person), I feel depressed because I am alone and with my best friend, the bed. Also, I was left because living with a person who does not have enough energy to live life is really something terrible, but I am not sad I realized that even though I loved that person I did not have enough energy. Energy is needed for attention, thoughts, care, sharing experiences and life together! I am lucky, I know, because I am still able to go to work and still have (less and less) a smile on my face because I consider myself a jovial person, but it is a struggle every day and I do not know how much longer this can continue.
A recent study of the gut microbiota (the heart of the immune system is found in the gut) showed a classic case of ME/CFS dysfunction (see this article ) , with the total absence of some bacterial species (some that cannot be replenished orally) while others are over-present and still others in small numbers. Obviously, diet alone cannot solve these serious problems.
In November 2020 three days after finishing a 7-day therapy of ciproxin (a fluoroquinolone, ciprofloxacin) + metronidazole severe neurotoxic reactions began (extra-pyramidal syndrome, lockjaw, girdle parkinsonism, anxiety , tremors) that lasted over three months in addition to , one month later, loss of near vision (+1 to +2. 25 in one day – fluoroquinolones are derived from hydroxychloroquine which has a known ocular toxicity) and other symptoms that at the end of 2024 have not fully returned .
I am updating my situation, experiments, therapy on my blog and hope that a cure for our disease will be found soon. Even the immunoglobulin therapy I am doing in 2017 did not give any result.