Well, I am listening to Mississippi Fred McDowell, Jesus is on the Mainline.
Memorial Day and my mother's birthday. My Danish exchange mother's birthday was yesterday, she is dead too. I reconnected with my Danish exchange brother. I have another brother too: my neighbor from Alexandria Virginia. He and my sister apparently became siblings while I was in Denmark so now I am a sibling too. I think it would be entertaining if my two brothers met.
I think I have navigated being cautious friends with the man I just broke up with. Everyone has Issues and Baggage at our age. Some people have unpacked their bags and others haven't. I'm not saying either of us has emptied all their baggage. I am not sure that ever gets finished....
A friend came to tea two days ago. Haven't seen her in ages. I finally have some frigging energy to see people and do things. Thank God for oxygen concentrators. Everyone should have one.
The Functional Medicine stuff finally makes a little sense. They are pushing hyperbaric oxygen big time. Yeah, I will bet that it does work for chronic fatigue and fibromyalgia. But 2 liters nasal cannula would be a fungkk lot cheaper and easier. They make more money with hyperbaric oxygen. So it is not entirely quackery. They don't seem to know why it works.
Working theory is that my personal tubulin antibodies are keys that fit the lock of my fast twitch fatiguable muscles. Why, says B, don't you have a heart attack? Why no thanks, not today. Because the heart is fast twitch non fatiguable. Heart lungs and brain are the last to go. The body fights to the death, so to speak, and will let the kidneys go before those three.
Really Bad Chronic Fatigue has tubulin antibodies that are keys that fit the lock to both fast twitch fatiguable and slow twitch muscles. At least, that's my theory. Fungk. I am fungking glad I don't have those fungkers. I suppose if you have antibodies to the fast twitch nonfatiguable you have a heart attack and die right away. Or maybe get broken heart syndrome....
I think the triad of antibodies is the same. BUT everyone makes different versions of the antibodies. In theory some of the tubulin antibodies could fit in the lock and turn it: super athletes and crazy endurance. Those marathon and Iron whatever crazies. The dopamine antibody could hit different receptors in different people. Thus the weird pattern of different "neuropsychiatric" responses. I happen to have a dopamine antibody that hits all of the receptors and turns them on. EEEeeeyyeeehjeeeekes&^%$fungkk%((*&)(!!!!!
The third antibody is the food and fibromyalgia one. I understand it the least. However, that's the one that responds to diet. I hurt like hell if I eat gluten or sucrose or fructose. Raising my blood sugar at all when the antibodies are high makes all my muscles hurt. This time it was specifically heart and lung muscles, which feels really fungking bad. That's why I went to the emergency room: it was my heart hurting. Labs normal, ECG mildly abnormal, echocardiogram normal, not a heart attack. Can't see the fungking antibodies sticking in the heart like pins. I was pretty sure I didn't have coronary artery disease because the gol dang dopamine antibodies wouldda done already have given me a heart attack, holy sheeeeit. Tachycardia is good at inciting a myocardial infarction if you have blocked arteries. See, I can talk medical if I absolutely have to. So the weird patterns of people having gluten intolerance and lactose intolerance and intolerance of black or gay people, well, it's totally explained, right? This is all theory. Don't get excited. It's extrapolation. Oh, you like straps? I knew that.
Now ALL I HAVE TO DO is get the word out. How? Well, I don't know. YOU NODERS FEEL FREE TO GIVE ME FUNGKING ADVICE, SEE? AS LONG AS YOU AIN'T BEING ASSHOLES AGAIN.
What I need is three or four human chronic fatigue guinea pigs. Preferably well off ones. I bring them here one by one, run my tarot deck**, get a medical history (now, I am not working as a physician, mind you, 'cuz I am disabled), discuss what they personally do and don't tolerate as to diet, put them on 2 liters nasal cannula and see what the hell happens. I betcha some will get better. I have tried luring in the five chronic fatigue people that I know in town. They are resisting. Ok, I will admit, I am a pain in the ass when the antibodies are high. But YOU try being a manic lizard. I try to make it look fun, dog namd it. Fungk. It is not always fun. And the next person that tells me I should be drugged with celexa or valium or please god SOMETHING, is going to get a facepunch. Yeah, I probably won't do that but I may well say: "Ok, fuck you and your horse. This conversation is over. Leave, fucker."
Hmmmm. I still have all the clinic records and actually can think of a potential guinea pig. Found out one that I'd love to try on oxygen is dead. She switched docs a while ago. I think she was reading both the blog and this. Might have gotten too weird. Anyhow, she described feeling like all of her tendons would tighten all night long. She was on a really low dose of opioids, I had presented her to the UW pain clinic, none of us could figure it out. I think all the muscles and tendons and whatever slowly tighten in the night when we are just hypoxic enough... poor muscles. "Fungk, I can't fungking breathe..." We had done every test I or UW could think of except for heavy metal testing. She balked at that. I don't think it was that, though. Tubulin antibodies to the tendons, sigh. I am not saying that this is the explanation for every gol dam case of chronic fatigue. However, think if it fixed 10%. Or 30%. Fungking huge.
I am thinking about strategies. You come up with some. The trouble is that not only am I a rural family medicine doc, now disabled, but the entire hospital medical community* thinks I am batshit bipolar crazy. They are only right when the antibodies are up and then I am borderline crazy. I am still able to think logically. "But boy do you talk fast," says B. "It makes you think so fast."
"Nope." I say.
"Whaddaya mean, no."
"This is how I think all the time. Though more emotional and more paranoid and I want to hide under the bed. It's not that I think faster. It's that I can't HIDE it. I have been hiding it since I got to school. I tell people what I am doing or thinking until they get that "She's crazy" look in their eyes, or until they think I am lying. Then I shut up. With the dam hospital docs I bloody well don't even have to talk. I can just walk in the room and they get that "She's crazy." fear look in their eyes. Asshats. Chickenshit, too."
Anyhow:
1. write the book about all of this. Yeah, but will take at least a year. The post covid people need the word NOW.
2. Present my own case to UW pain clinic. 60 year old alternative medical provider blah blah blah. See if they come up with PANDAS. Fess up. Ask for help.
3. Write up my case for the New England Journal of Medicine. I hate medical writing. Most boring stuff other than legalese and CMS. Ok, CMS aka medicare is worse. Bleagh.
4. Write a rural family doc letter to the New England Journal of Medicine. There is a chance they might publish it. Slim though.
5. Well? Got any ideas? YOUR IDEA HERE.
6. Do my own series of You Tube videos about chronic fatigue/fibromyalgia and put them up. More effective if I charge, though, because people are crazy. So I should charge. Like the Thyroid Secret and all those other ones. Ick. On to the bandwagon I climb.
7. Write a pop song about chronic fatigue and getting better. Heh. Would P!NK sing it?
8. Go for my PhD in immunology and plasmapherese the antibodies and study the little buggers. Buggerit. Maybe.
9. I now have ten years of CEO experience in admittedly a very small clinic. I should just take over the CEO job at the hospital and mandate that all chronic fatigue patients get a two week trial of oxygen. Heh. That might take a while too.
10. Find some gol dang angel investor to fund me a gol dang lab and some bench scientists. Odd that I already worked in immunotherapy for two years at NIH, from about 1987 to 1989, with Steve Rosenberg MD, head of the National Cancer Institute. There is a paper that my name is on, about using an apheresis machine to harvest LAK cells for cancer immunotherapy. I was a lab tech for a bit over two years using interleukin 2 to stimulate white blood cells from tumors, growing up massive cultures, concentrating them with the apheresis machines and then the docs would put the cells back in the patient. One in three would have a miraculous response, complete cure, of metastatic melanoma or metastatic renal cell carcinoma, which were both otherwise lethal. Funny that now I need to go back to the science bench....
I have decided I don't want to be a witch. I want to be a grandmother. A honey badger grandmother. I had a mom leave her child with me two days ago. I didn't know the child was in the front yard and scared it. It was a fawn, one or two days old. It got startled and ran and got its face caught in the fence. Then it screamed. Fawns can scream. I gently pushed it out of the fence from outside. Mom came bounding. It slipped under the fence and nursed. Mom then took it to another yard. If they want me to babysit, they might warn me before they drop the kid off. Kids get a little scared sometimes.
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*Well, ok, there is one general surgeon who has worked with me for 21 years now. He does not think I am crazy. It's kind of refreshing and nice. Bless him.
**Yeah. Someone gave me a Tarot deck when I was 12 or 13. It turns out to be rare now. It has 007 all over the back of the deck because it was the one put out for the James Bond movie. I forget which one. I started messing with the Tarot back then. I ran more than one lay out for my father's new job at General Electric. No matter how many times I did it, it came out really bad... yeah. He quit going to work after his boss left without telling him and he got mugged in the parking garage. The two guys threw him in the trunk of his own car because he didn't have any cash. They said they were going to kill him. He yanked the wiring for the taillights out, hoping a cop would stop them. Then he figured out how to open the trunk from inside and hopped out at a light. This happened while I was in Denmark but my mother wrote a letter twice a week and didn't tell me that this shit was going on. When I got home he had not been at work for 4-5 months, was drinking booze out of a tea mug and was nearly catatonic with depression. And my mom acted like it was all just fine. It was a pretty weird homecoming. I longed for my nice normal Danish family....
See I want to use finger puppets for the medical videos. I need a panda finger puppet. Also, let's see: strep A, influenza, mono finger puppets. One for Dr. Steve Rosenberg. Oh, it would be really fun to pick out finger puppets for some of the hospital docs who have treated me really badly. I need some really ugly stupid looking puppets.... or well, they could look smart and well groomed. Watch their actions, though...