Exercise mets

Mets could be metastases, a terrible word in cancer. But this is exercise mets. I am half way through my pulmonary rehabilitation for pneumonia and getting stronger. So what is a met? “One MET is approximately 3.5 milliliters of oxygen consumed per kilogram (kg) of body weight per minute.” (from https://www.healthline.com/health/what-are-mets#definition).

Ok, that doesn’t seem very useful. I find this way more useful, a chart of how many mets are used for certain activities:

https://www.healthline.com/health/what-are-mets#examples

The treadmill I am using at pulmonary rehab tells me how many mets I am using. However, last time I turned it on and didn’t enter my weight. It uses 155 pounds, which is more than I weigh. I think that then the mets are wrong. It isn’t exact anyhow. The important thing is that I am improving and off oxygen! I am now up to 5.3 mets, going at 3.3 mph, on a 4% grade, for 40 minutes. Pulmonary rehab is twelve weeks, twice a week, with a respiratory therapist and a physical therapist.

My respiratory therapist asks my goals. To bicycle distance, hike across the Olympics, and to ski again, off oxygen. That means altitude. Once we are above 5500 feet, the body really starts noticing the thinner air. I am not there yet but I am so pleased to be improving.

On the chart, I am in the moderate exercise range. To bicycle, I would have to be able to sustain 8 mets. Not yet, not yet.

Being off oxygen (except night, flute, sustained singing and heavy exercise) is GREAT! The intrinsic problem has not been fixed, thought. Fully twenty specialists since 2012 have not figured out why I get pneumonia easily and how to protect me, other than masking and not working in Family Medicine or anything people intensive. It’s annoying, my career has been blown up. I don’t have much hope of an overarching diagnosis at this point, but I’m willing to keep trying. We don’t know everything in medicine and really, I do not think we ever will. It’s endlessly complex and fascinating.

I think the mets chart should be shared with patients. I had one couple who insisted that the woman had PMS even though she was postmenopausal. I scratch my head and continue to watch her. After months something made me suspicious and I order an echocardiogram. She had congestive heart failure, seriously reduced heart output. I promptly called the cardiologist and said, “This is new, she is on NO MEDICINES.” He saw her within a week. Sometimes things do not present in a straight forward manner. She felt much better once we got her heart functioning better. If a person is losing their ability to perform moderate intensity mets, they should see their doctor. It could be spending too many hours in front of a screen (turn it off, get up, go outside, walk daily!) but it could also be something else. Heart is the number one killer still.

Stay healthy and keep those mets up!

Ha. I did use the word certain, didn’t I? And one of my favorite exercises is dancing. Listening to this right now:

Covid-19: Long Haul III

The CDC has guidelines for Long Covid and it can qualify for disability in the United States.

Here: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

And here: “As of July 2021, “long COVID,” also known as post-COVID conditions, can be considered a disability under the Americans with Disabilities Act (ADA). Learn more: Guidance on “Long COVID” as a Disability Under the ADA, Section

Here is the list of “most common” symptoms from the CDC:

General symptoms

  • Tiredness or fatigue that interferes with daily life
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Fever

Respiratory and heart symptoms

  • Difficulty breathing or shortness of breath
  • Cough
  • Chest pain
  • Fast-beating or pounding heart (also known as heart palpitations)

Neurological symptoms

  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
  • Headache
  • Sleep problems
  • Dizziness when you stand up (lightheadedness)
  • Pins-and-needles feelings
  • Change in smell or taste
  • Depression or anxiety

Digestive symptoms

  • Diarrhea
  • Stomach pain

Other symptoms

  • Joint or muscle pain
  • Rash
  • Changes in menstrual cycles

There are recommendations for a work up by physicians. Depending on symptoms, this may include labs, ECG, echocardiogram (heart ultrasound), CT scan and other tests.

A friend has just gone through those four tests . They are “normal” except for her heart rate. At rest her heart rate is 70 with a normal oxygen level. Walking, her heart rate jumps to 135. Over 100 is abnormal in this athlete who is NOT exerting heavily.

So WHAT is going on with NORMAL testing? I think this is “Covid-19 Viral Pneumonia”, a complication of Covid-19, just as “Influenza Viral Pneumonia” is a complication of influenza. Ralph Netter MD has an illustration of lungs from a person who died of influenza viral pneumonia: the lungs are swollen and inflamed and bruised. WHY is the testing “normal” then? The swelling is throughout the lungs, so a chest x-ray sees it as all the same density and a CT scan also sees it as all the same density. The lungs may have mildly decreased breath sounds, but the sounds are even throughout the lungs. The useful TEST is a walk test. I have tested patients with “walking pneumonia” in clinic for years: get a resting heart rate and oxygen level. Then have my patient walk up and down the hall three times and sit back down. Watch the heart rate and oxygen level. If the heart rate jumps 30 beats up or is over 100, the person needs to continue rest until the heart rate stays under 100 or jumps less than 30 beats. It is important to observe the heart rate until they recover. Sometimes the oxygen saturation will drop as the heart rate comes down, and some people qualify for oxygen. Steroids do not seem to work for this. The length of time to healing is not totally surprising, because a lobar pneumonia that is visible on chest xray takes 6-8 weeks to fully clear. It is not too amazing that a bad walking pneumonia could also take 6 weeks or more to clear. If the person returns to work too soon, they prolong the lung inflammation and they are at risk for exhaustion and for a secondary pneumonia. The treatment is REST REST REST and support.

Do they need oxygen? Currently oxygen is covered only if the person’s oxygen saturation drops down to 88%. However, I think that oxygen would help recovery and make them less exhausted. With my first walking pneumonia, which was influenza, my walking heart rate was 135 and my resting heart rate was 100. Both were abnormal for me. Neither I nor my physician could figure it out. This was in 2003. I did look in my Netter book: I took one look at the painting of the influenza lungs and shut the book. “Oh.” I thought. “That’s why I can’t breathe.” The image is here, though I wish it were bigger.

It took two months for my heart rate to come down, the lung swelling to improve, and me to return to work. I read the text of Dr. Netter’s image a year later and then I read an entire book about the 1918-1919 influenza. Since then I have walked people who come in complaining of exhaustion after a “cold” or “bad cough”. Viruses can cause this and so can bacteria: mycoplasma pneumonia, chlamydia pneumonia, pneumococcal pneumonia, legionella and strep A. If the fever is gone, the infection has probably resolved, but it still can take days or weeks for the lung tissue to recover.

For Covid-19, I would add a third test: walking with weights. We test cardiac patients by asking if they can carry two bags of groceries up a flight of stairs. That is 3 Mets, a measure of the heart load. We need to measure the lung load as well. If the lung tissue is swollen, the amount of airspace is cut down and can be half normal. The heart attempts to take up the slack. The person may tolerate a heart rate of 135 for a while, but it is like running a marathon. If they are older or have heart disease, this can trigger a heart attack. I would walk the person carrying hand weights, and see the recovery.

Also, brain fog is unsurprising. If your oxygen level is borderline, it is darn hard to think. I write really strange songs when I am hypoxic. I get goofy and feel weird. The fast heart rate also feels like anxiety: I think that the body is trying to tell me to rest.

The definition of Long Covid is symptoms after 30 days. Please see your physician if you are still ill and continue to have symptoms.

Blessings.

Here is a recent article about T-cells and inflammation in the lungs of Covid-19 patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8460308/

and this: https://www.frontiersin.org/articles/10.3389/fimmu.2020.589380/full

kooky klothes

I took this May 31, 2022. I was still pretty sick with pneumonia and needed oxygen to do practically anything. I had dropped ten pounds the first week of being sick, March 20th. In 2014 it was six months before I could return to work and then only part time and exhausted. So I knew I was likely to be in for a six month haul. I hadn’t figured on needing oxygen, but it made me feel so much better and be able to think again!

Anyhow, I was entertaining myself by going through my closet and putting on things that I did not wear to work. I like the sun lighting up my legs in this photograph. The dress is shorter than it looks and the jacket has tags in Japanese and is a soft woven silk. I thrift shop by feel, because silk and mohair and cashmere and wool and cotton feel so wonderful.

Later the same day, I took this photograph:

I would wear out very quickly during the day. Today it is pouring here and last summer by now it was much much warmer! The sun made my lungs hurt less.

For the Ragtag Daily Prompt: kooky.

Lung swelling and long covid

I wrote this in 2017, about influenza. However, I think covid-19 can do the same thing. Part of long covid is letting the lungs really heal, which means infuriating amounts of rest and learning to watch your own pulse. Watching the pulse is easier then messing around with a pulse oximeter. The very basics of pulse is that normal beats per minute is 60 to 100. If your pulse is 70 in bed and 120 after you do the dishes, you need to go back to bed or the couch and REST.

From 2017: Influenza is different from a cold virus and different from bacterial pneumonia, because it can cause lung tissue swelling.

Think of the lungs as having a certain amount of air space. Now, think of the walls between the air spaces getting swollen and inflamed: the air space can be cut in half. What is the result?

When the air space is cut down, in half or more, the heart has to work harder. The person may be ok when they are sitting at rest, but when they get up to walk, they cannot take a deeper breath. Their heart rate will rise to make up the difference, to try to get enough oxygen from the decreased lung space to give to the active muscles.

For example, I saw a person last week who had been sick for 5 days. No fever. Her heart rate at rest was 111. Normal is 60 to 100. Her oxygen level was fine at rest. Her oxygen level would start dropping as soon as she stood up. She had also dropped 9 pounds since I had seen her last and she couldn’t afford that. I sent her to the emergency room and she was admitted, with influenza A.

I have seen more people since and taken two off work. Why? Their heart rate, the number of beats in one minute, was under 100 and their oxygen level was fine. But when I had them walk up and down a short hall three times, their heart rates jumped: to 110, 120. Tachycardia. I put them off from work, to return in a week. If they rest, the lung swelling will have a chance to go down. If they return to work and activity, it’s like running a marathon all day, heart rate of 120. The lungs won’t heal and they are liable to get a bacterial infection or another viral infection and be hospitalized or die.

I had influenza in the early 2000s. My resting heart rate went from the 60s to 100. When I returned to clinic after a week, I felt like I was dying. I put the pulse ox on my finger. My heart rate standing was 130! I had seen my physician in the hospital that morning and he’d gotten a prescription pad and wrote: GO TO BED! He said I was too sick to work and he was right. I went home. It took two months for the swelling to go down and I worried for a while that it never would. I dropped 10 pounds the first week I was sick and it stayed down for six months.

Since the problem in influenza is tissue swelling, albuterol doesn’t work. Albuterol relaxes bronchospasm, lung muscle tightness. Cough medicine doesn’t work very well either: there is not fluid to cough up. The lungs are like road rash, bruised, swollen, air spaces smaller. Steroids and prednisone don’t work. Antiviral flu medicine helps if you get it within the first 72 hours!

You can check your pulse at home. Count the number of beats in one minute. That is your heart rate. Then get up and walk until you are a little short of breath (or a lot) or your heart is going fast. Then count the rate again. If your heart rate is jumping 20-30 beats faster per minute or if it’s over 100, you need to rest until it is better. Hopefully it will only be a week, and not two months like me!


Feel free to take this to your doctor. I was not taught this: I learned it on the job.

I took the photograph, a stealthie, in June 2021, when I was still on oxygen continuously.

organize

I am ready to organize my house.

I thought for years that I am NOT capable of organizing a house.

It turns out that I never had time to organize my house. I was a single mother family physician doing rural medicine including obstetrics and frequently on call, and then I opened my own business.

So organizing the house was way down the list of priorities.

I’ve been home now since March 20, 2020. I am starting to really recover from the pneumonia and muscle dysfunction. So now I am organizing once again.

I need a work room, other than the computer room. I set one up upstairs, but in this 1930s house, the upstairs room is too cold. It is great for sleeping but not for a prolonged time working on a project. So I am eyeing my spaces. I could use the front room which is currently the invasion from my clinic. However, I love having the front windows right there when I am on the computer. The cats have a chair there too and keep me company.

I am eyeing rooms in the basement. There is baseboard electric in three rooms. It means moving things around, but that is not difficult. It may take me a little while, but I will get it done.

I am ready to organize it.

____________________

For the Ragtag Daily Prompt: READY!

acoustic bicycle

Over KwanChunChrisSoliday, we discuss bicycles. We now have a plethora of electric bicycles, so we need a phrase that describes the “old” style bicycle. We came up with acoustic or analog. I like acoustic bicycle, because it sings.

My friend B-from-Arlington (BfA): “But they don’t make noise.” He didn’t approve of either idea.

“Well, we had spoke bells, and playing cards. My bikes make noise.” Sometimes it’s me making it.

We are riding on a rails to trails path in Northern Virginia. Seven of us and me on oxygen. It’s only my second bike ride since March 2021, when my lungs fell apart. We are all on acoustic bicycles.

I feel pretty strong for most of it, 14.5 miles. It seems flat, though it is a very gentle downgrade, until the last 0.5 mile, which is gently up hill. Oh, my lungs don’t like that bit at all and by now my muscles are saying Why are we doing this? I am relieved when we get to the coffee shop destination. Three of us will stay there, while the other four will ride back and get the cars. I hang out with K-f-A, BfA’s spouse, and their son. Their son examines my phone, asks why it has four camera eyes. I have no idea, so he proceeds to figure it out. We play with the slow motion camera for a while.

We know what a penny farthing is, and safety bicycles and tricycles. The early safety bicycles did not have brakes and had wooden rims and wooden spokes. My brother outlaw has one, from the 1880 or 90s. Another friend collects penny farthings and has one that is entirely of cast iron. It would be a little bumpy and the seat is pretty hard. It is also massively heavy. So now we add acoustic bicycles to the electric ones.

Go, google, spread the word.

________________________________

Dang, others have come up with it too. Traditional bicycle sounds too fogey.
https://www.reddit.com/r/ebikes/comments/hp2l30/can_we_please_stop_calling_traditional_bicycles/
https://www.bikebiz.com/what-shall-we-call-the-non-electrified-bicycle/

Covid-19: masks work, we figured that out YEARS ago

I was thinking about masks and the whole “masks don’t work” or “masks are unproven*” thing. That is complete and utter crap. We proved masks work YEARS ago.

If they don’t work, do you mind if your surgeon don’t wear one? What about your nurse with a cough when you are in the ICU? I think we have proved quite definitively in the operating room that masks work.

Also, your family doc and OBgyn ain’t gonna NOT wear a mask when delivering baby because it can be REALLY SPLASHY. And some patients who are delivering a baby have hepatitis B or HIV or hepatitis C or whatever. WE DO NOT WANT TO CATCH IT SO WE WEAR MASKS. MASKS WORK.

And take tuberculosis. Tuberculosis bacillus is tiny and can be air borne, if you have active tuberculosis and cough. We use reverse flow rooms in the hospital with an airlock: a door to a small entry room, that has to close before you enter the inner patient room. And the air is slightly lower pressure so that air comes in from the airlock but doesn’t flow out. All the air out of the room is filtered to catch and kill the tuberculosis bacillus. We go in the airlock and put on nearly full gear: gown, gloves, mask, hair covers, shoe covers. When we come out, we take it all off in the airlock. We also keep a stethoscope in the room so that we don’t carry infection from patient to patient.

So the whole anti mask thing seems categorically insane to me.

Like, didn’t we figure out masks work back before the civil war? Or thereabouts. No, maybe later than that. Without masks and gloves we had all the women with post baby fever, who died like flies and most people died of infection after surgery. Until that coke addict at Johns Hopkins made people wear clean clothes and wash their damn hands before each surgery and wear gloves. Suddenly people survived post surgery at a much higher rate. Everyone came to train with him to imitate him. By 1897 everyone was wearing gloves to prevent infection. And so a brilliant coke addict invented medical residency, which is why residents are not allowed to sleep. We’ve gotten over that a bit.

Anyhow: masks work. Think, people, think.

*Usually the unnews qualifies this as “masks are not PROVEN to work with Covid-19”. What, you want a ten year clinical trial first? Are you crazy? And the resounding answer is “YES! We are crazy!”

For the Ragtag Daily Prompt: December. Because everyone should have figured out masks by now.

Pediatric autoimmune neuropsychiatric syndrome

Yes, well, PANS rather than PANDAS. PANDAS is just a cooler acronym. Who wants a syndrome named after a kitchen implement? Not me. And probably tuberculosis (my mom’s) was the initial insult and then I was one of those kids who gets Strep A at least yearly. My daughter too, but my son only had Strep A once.

This is actually Pseudoautoimmune. That is, the antibodies that show up to Strep A attack parts of ourselves. It buggers up the acronym so they are not calling in PPANS. Yet. And eventually they will have to drop the Pediatric, so then it’s back to PANS. Oh, well, I can live with a stupid acronym.

My current theory is that the four antibodies that they’ve found so far are an interesting back up crisis system. Either stress or infection can set them off. Once the antibody levels are high, a person gets

1. Either brain fog or some variation of ADHD/OCD/Manic-depressive/TICS/Oppositional Defiance/etc. The brain fog can be labeled depression or memory loss, partly depending on the age of the person.

2. Muscle weirdness: either super strong/super endurance or slow twitch/fast twitch/both muscle dysfunction. With slow and fast twitch muscle dysfunction, theoretically that would be a source of at least some of the chronic fatigue. Chronic fatigue pretty much happens over night and is triggered by one in ten severe infections and/or stress. Though possibly more with Covid-19. The latest estimates are 30% of everyone infected has some form of Long Covid.

3. Anti lysoganglioside. I am still studying lysogangliosides. They lyse ganglions. In theory if this blocks the lysogangliosides, there could be a higher risk of cancer. If the ganglions are lysed more, well, more brain dysfunction and memory loss. I also noticed that I had tremendous muscle pain if I ate the wrong things. This could then be the mechanism for some of the fibromyalgia people.

How to fight this?

It’s not going to be popular in medicine, particularly allopathic, because the main treatments that I can think of are NOT DRUGS.

1. Look for infection and treat it. Penicillin is cheap. High dose if the person doesn’t respond. I don’t look septic when I am near septic: no elevated white blood cell count and no fever. It’s the urine output multiplied by 5, that is, 10 liters instead of 2 liters in 24 hours, that is the clue. This time I did not get to that point and it was milder. Though I need oxygen.

2. Quiet the immune system. Teach the slow breathing that we are using for chronic pain and our anxious people and PTSD veterans. Going from the ramped up hyper crazy sympathetic nervous system state to the quiet relaxed parasympathetic nervous system is a skill that I think anyone can learn. The immune system calms down in the parasympathetic state and antibody levels will drop. The naturopaths want to give tons of pills (that they sell from their clinic or get a kick back from the on line company) for “immune dysfunction” but most of it is crap. Yes, crap. So the naturopaths won’t like this idea either.

3. For the anti lysoganglioside, I’ve treated this by changing my diet. When my antibodies are high, I have to keep my blood sugar as low as possible which means I go keto. As the antibodies come down, I can add foods back in. I am eating everything now except gluten. The gluten is annoying but Things Could Be Worse. Lots worse. This time I figured out that gluten, fructose and sucrose were culprits but not lactose and as I get better rice, potatoes and corn are fine. I dislike soy and always have, except for soy sauce and tamari. Tofu tastes like squishy cardboard to me, yuk. The gluten thing may get better, but since it appears that the baseline of the antibodies rises with each infection/attack, it might not. I will ask for celiac testing in January if I haven’t improved by now. I am not a “bad” celiac who gets terrible symptoms if there is a whiff of gluten. A little doesn’t bother me. French toast two weeks ago brought back the diverticular symptoms and kept hurting for a week. This did motivate me to hold off on gluten. Especially in the holidays and traveling. Again, everyone makes different antibodies, so the food patterns could be highly variable in different people. How very very interesting.

4. Treat the psychiatric stuff. If antibiotics and slow breathing and other parasympathetic exercises don’t help the person, then add the psychiatric drugs. But I’d try the above three first, unless the person is suicidal or threatening others. I am a drug minimalist. Eat food, exercise, have friends, work some, play lots and avoid pills. Including vitamins and supplements.

And that’s the basic plan for treating PANS. The symptoms of Long Haul Covid-19 bear a strong resemblance to my four pneumonias: brain fog or psychiatric problems, shortness of breath, fatigue, muscle pain. Therefore I would try similar treatments which may help some people with Long Haul Covid-19, chronic fatigue and fibromyalgia.

We will see if I make any headway at all.

___________________________________________

For more about PANS/PANDAS: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

writhe

You are sick as shit.

You go to the ER.

You finally feel safe, on a bed, they will save me, you think.

The nurse is on autopilot. He does not seem concerned. You are shaking a little as he arranges you on the bed. He puts the heart monitor stickers on and hooks you up. Blood pressure cuff, pulse ox. Blood pressure is fine, pulse is a bit fast, at 110.

You notice he is not making eye contact.

“I’m cold.” you whisper.

He doesn’t reply. He keeps messing with the wires. He puts the call button next to your hand. He leaves and returns with a warm blanket. It feels wonderful. He doesn’t say a word.

You feel better under the warmth.

The respiratory therapist wheels in the ECG machine. You smile at her but again, no eye contact. She puts more stickers on you. “Hold a deep breath.” The ECG spits out. She takes it and leaves.

The radiology tech wheels the portable xray machine in. You watch his face but don’t bother to smile. He looks everywhere but at you. It’s a bit creepy. Are they all robots? It’s 3 pm, not 3 am. “Lean forward,” says the tech, putting the radiology cartridge behind you. “Take a deep breath and hold it.” He takes the cartridge and leaves.

The nurse is back. Puts in the iv and draws 5 tubes of blood. You are shivering a little. He doesn’t seem to notice. You think about another warm blanket. The iv fluid starts and you can feel it running cold into your arm.

There is a child crying in the ER, in some other room. You start noticing the noises. Machines beeping. People typing on computer keyboards. No one is talking. The kid gives a howl of protest, rising and then is abruptly quiet.

Your hands and feet are tingling and burning. You writhe a little under the blanket. Sensation is returning to your hands and feet. It hurts but it is also good. You were at the point where all your feeling had shrunk to a tiny spark in the center of your chest. As the iv fluid runs, feeling slowly spreads out from that.

The doctor comes in. Grumpy, clearly. “Lean forward.” Listens to your chest. “Sounds clear.”

“It’s been hurting for 5 days. It hurts to breathe. Burns.” You are anxious as hell. BELIEVE ME.

The ER doc gives a little shrug. “Oxygen sats are fine.” He does a half-assed exam. He leaves.

You look at your feet, taking your socks off. Because he didn’t. There are two black spots, a couple millimeters across, old blood. Those are new.

You press the call button.

Time goes by. The nurse floats back in.

“Look. Tell the doctor to look. These are petechiae.” You point to the black spots.

If the nurse had laser vision, your feet would be burned. The nurse glares at your feet. He goes out.

The doc comes in and looks at your feet.

“They are petichiae. I have an infection.”

He gives a tiny shrug. “Your chest xray looks clear. Your labs are normal. You are not running a fever.”

“I am on azithromycin for walking pneumonia. I suddenly felt like all the fluid was running out of my arms and legs. I am worried that I am septic.”

“Blood pressure is fine. You are really really anxious.”

You are furious. It probably shows on your face. You are terrified.

“Could it be an antibiotic reaction?”

Shrug. “No rash.”

“Except the petechiae.” A sign of sepsis.

“I will change the antibiotics. Clindamycin.” He leaves.

You lie back, terrified. He doesn’t believe you. He is sending you home, septic. You will probably die.

The nurse comes in. Removes the iv and unhooks the monitor and the blood pressure cuff. You get dressed, numb and frightened and cold. The nurse goes out and returns. He recites the patient instructions in a bored voice and gives you the first dose of clindamycin.

You walk shakily to the door of the emergency room. To go home. While you are septic and they don’t believe you. You know what happens with sepsis: your blood pressure will drop and then organ damage and then IF you survive you could have heart damage or lung damage or brain damage and you might not anyhow.

You go home.

No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

___________________________________

No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.