So how can the lizard claim to be sick and yet hike 12 miles?
Ah, gentle reader, good question. I am delighted that you care.
I am having a fast twitch muscle problem.
I have been reading about muscles. There are slow twitch muscles and fast twitch muscles. The fast twitch muscles break down into fast twitch fatigable and fast twitch fatigue-resistant. The fast twitch fatigable are part of the fight or flight system and run partly on adrenalin.
Now, back to the PANDAS, my antibody disorder. The NIMH website says that the antibodies are thought to attack the basal ganglia, but either they are wrong, or mine is a variation. Anyhow, I think my antibodies to strep A attack my adrenalin system. The website says that a PANDAS attack can be triggered by other infections than strep A. The immune system ramps up to fight an infection and it must dump out lots of different antibodies.
So with the bad PANDAS attacks that I've had, my heart rate jumps from its normal 65-70 to a baseline of 100 and then jumps to 120-130 when I walk across a room. Normal heart rate is 60-100 and 120-130 is exhausting. It feels like I am running a marathon, like I am on super caffeine, like I am on amphetamines or meth. Well, if the antibodies attach and trigger my own adrenalin system, it is as if I have my own personal amphetamines. I do not like it at all.
There I am with a heart rate of 100 lying still AND wired. Because the adrenalin fight or flight system makes you speeded up, anxious, hypervigilent, speeds your thoughts, and then at the end of the day I would cry out of exhaustion. I have had four bad PANDAS attacks. Mononucleosis at age 19, influenza in 2003, strep A pneumonia and sepsis in 2012 and again strep A pneumonia and sepsis in 2014.
I had abnormal lung testing in September, after the infection starting in early June. Retesting last week, my lung function has improved so there is less of an obstructive componant. Obstructive lung disorders include emphysema, COPD, asthma, pulmonary fibrosis and then various weird arcane rare things. I am thankful that after three bad pneumonias I don't have much lung scarring. I was worried about that because that is one of the causes of pulmonary fibrosis and it does not get better.
My muscles are still whacked, though, and it's been five months. The other three times I dropped 8-10 pounds in the first week (amphetamines do that, right? So do continuous adrenalin-like antibodies.) This time I dropped 10 pounds in the first week and have only gained two back. If I use fast twitch muscles then they hurt, feel week and feel trembly or twitchy for at least two days. They also hurt. Talking triggers it, so my vocal cords and lungs have been worst. Oh, and when the antibodies were high, heart too. Ow. Chest pain*.
But the antibodies are down to normal so why aren't I better? Here I go into theoretical mode. An analogy: the U of WA Pain and Addiction clinic says that cells bathed in opiates continuously withdraw their opiate receptors. They also "trim their dendrites", that is, their connections to other cells in the brain. The UW is worried that the latter problem is permanent.... oh, dear. Opiates permanently changing the brain? Shee-it! Anyhow, the withdrawal of the opiate receptors is part of why patients tend to need more opiates as time goes on. Also why I say get off the opiates as soon as possible.
Anyhow, my theory is that my cells have also withdrawn their receptors, but it's the adrenalin receptors. So, if my fast twitch muscles have very few receptors, they would wear out really really quickly. I tried to return to work five weeks after June 3rd. We spaced the four patients a day one per hour and I still got hoarse and exhausted.
Non functioning fast twitch means I can't bike, swim, run or ski. Or talk for long. Breathing hurts much of the time, but I find that it is necessary.
Functioning slow twitch means I can hike, slowly. Short of breath on little hills. I can dance, slowly. I can sing, especially sustained things. I did Rutter's Pie Jesu solo in a concert in July and again in August. Cough, cough, cough..... sustained notes, no problem. Weird, weird, weird.
I described this to my favorite neurologist and he tried to send me to the muscular dystrophy clinic bypassing him. The muscular dystrophy clinic refused, so I have to be tested for myasthenia gravis and have an emg first, even though Dr. Neurologist says that the emg can't distinguish slow versus fast twitch. Ok, so whatever. Jump through the medical hoops. I have never wanted to be an "interesting case" but I guess that I am rather stuck with it.
I go to sleep on nights that I have talked too much at 8 pm or 7 pm or 6 pm. I am just exhausted and my chest aches to beat the band. Good that I am a singer and a flute player and a swimmer and did zen buddhist meditation for 4 years in and after college: lots of breath training. It is coming in very handy.
And that's the news from lizard land, where all of the lizards are devious, vicious and above average.
slow and fast twitch muscles
NIMH PANDAS website
The NIMH website says that pandas affects children only. However, that apparently is only in the United States medical "system". In Canada or Europe, adults have it too. How special, to have a disorder that I am not allowed to have in my home nation, only abroad.
*I am not taking pain meds. Except an occasional beer. I would rather use an addictive substance that tastes good if I am going to use one, with appropriate caution. Pot makes my lungs hurt, yuk, way back in college.