On meditation and breathing

In college at the University of Wisconsin, I dated a gentleman who was following the Zen Buddhist tradition.

He meditated daily, for forty minutes, facing a wall.

I was quite intrigued. I did not think I could do that. I am a fidgety person and can’t sit still. I promptly tried it.

Forty minutes is a long time facing a wall at age 19.

I would fall asleep. I would start tilting to one side or the other on my zafu and jerk back up. I knew I was not supposed to follow thoughts, but I couldn’t not think. It is more subtle than that: I slowly figured out that I can let the thoughts pop up from the toaster brain, but try not to follow them. Wave at the thought. Let it go.

One day there was a small hole in the wall when I faced it. A tiny spider came out and went back in. I was very happy about the spider.

The next day the spider came out and waved one leg at me. Then it went back in the hole. The end of the 40 minutes is signaled by a chime. I got suspicious afterwards and went back to the wall. Not only was there no spider, but there was no hole, either. I did not see any more holes or spiders.

I meditated regularly daily for two years. After that I would return to practice intermittently. Meditation trained my breathing: my breathing slows way down during meditation.

I use that breathing when I have pneumonia. In the worst episode, I was in the hospital and disbelieved. I slowed my breath way way down to calm myself and so that I could think. Eight counts in, eight counts out. Then ten, then twelve. I needed to focus and figure out what was causing sepsis symptoms. And I did figure it out. The provider sent me home that morning, septic and 6 liters behind on fluid, but I was able to survive.

Now the pain clinics are teaching slow breathing. Five seconds in and five seconds out. Start with a few minutes and work up to twenty minutes. “Almost everyone goes from high sympathetic nervous system fight or flight state to the parasympathetic relaxed nervous system state.” I think we need more of that, don’t you? This is being taught for anxiety, for chronic pain, for fear and depression. I asked a veteran to try it. His response: “I hate to admit it but it works.” Also, “I’m not used to being relaxed. It feels weird.” I laughed and said, “I think it might be good if you get used to it.” He reluctantly agreed and continued the practice.

Peace you, peace me.

Vape

First, the definition of vapor:

noun

  1. The gaseous state of a substance that is liquid or solid at room temperature.
  2. A faintly visible suspension of fine particles of matter in the air, as mist, fumes, or smoke.
  3. A mixture of fine droplets of a substance and air, as the fuel mixture of an internal-combustion engine.

So vaping is smoking. It can be called vaping, but that is to trick us into thinking that it is not smoking, that we are not sucking chemicals into our delicate lung tissue. We only have one set of lungs. Lungs are like a tree, either the roots or the leaf parts upside down. Air is drawn in by our muscles expanding the chest and diaphragm, down the trachea, the bronchi, the bronchioles and at last to the alveoli, where tiny veins wrap each alveoli, trading carbon dioxide for oxygen.

I think of smoking as every cigarrette distroying an alveolus.

Vaping too, vaping is smoking. The nicotine is suspended in a solution and the vaporizer heats up until it is in vapor form. I started reading about vaporizers at least a decade ago. There were over 500 different types, mostly made in China, and there are all sorts of solutions. I was horrified to read that ethylene glycol was one of the solutions that held nicotine. When a dog drinks antifreeze, ethylene glycol, it is poisonous to the brain. Does anyone think that we should inhale smoke with antifreeze and nicotine in it? Really?

There is no control of what is put in the solutions. We don’t know what they will do long term but we know that nicotine is addictive and damages the lungs. Some of the vaporizers get so hot that the metal is also vaporized. Heavy metals are clearly bad for the lungs and poisonous as well.

Here is an article from the U of Colorado Medical Center with further reasons NEVER to start vaping. Because vaping is smoking: don’t let the term fool YOU. 4 reasons why you should stop vaping.

For the RDP: vapor.

Surreal surroundings

It was so gorgeous up on Hurricane Ridge yesterday! I think the wildflowers are surreal: whole mountainsides of wildflowers and the more you look, the more different ones you see. I am just starting to learn their names.

https://www.nps.gov/olym/planyourvisit/visiting-hurricane-ridge.htm

For the Ragtag Daily Prompt: surreal.

I think the orange flower is a paintbrush, but it is not showing up here, on the wildflower identification site.

Another site: https://www.intangibility.com/inw/Wildflowers/Indian-Paintbrush.html

If anyone can identify it more closely, let me know!

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

peace me

peace me, loves
peace me, strangers
peace me, Beloved
free us from dangers

peace as a river
peace as a wave
peace as a verb
peace saves

peace my heart
peace all of ours
peace all the friends
peace the wars

peace a gift
peace a joy
peace fearless always
no war toys

peace apparent
peace dove
peace triumphant
peace love

peace me, loves
peace me, strangers
peace me, Beloved
free us from danger

I kept the paper cup in the picture, because the cup is animals and plants, but the cup also is a pair of lungs. Breathe peace. And breathe for all the people recovering from covid-19, short haul and long haul. And breathe love and shelter and support to all those grieving for our dead and let us grieve too.

For the Ragtag Daily Prompt: apparent. And for peace.

Covid-19 and walking pneumonia

I wrote this essay in July 2017. Before Covid-19. It is clear that Covid-19 is also causing a walking pneumonia. People are exhausted when they get out of bed. No fever, they may not cough much, but if they get up, they can feel exhausted. The key to this is the heart rate, the pulse. If the pulse jumps 30 points faster or more, this implies lung swelling and reduced lung capacity. Right now, the only treatment we have is rest and time to heal. I should know, I’ve had really bad walking pneumonia four times: the first two times I was out for two months. The third time 6 months with 6 more months half days and chronic fatigue. The fourth time put me on oxygen.

I want to offer hope to the people with Long Covid-19. Having been through four bad pneumonias, with increasingly long recovery times, and now disabled for doing Family Medicine, I have experience to share. I will write more about that in the next essay.

From 2017: Walking pneumonia is changing.

The classic bugs are four “atypical bacteria”:

mycoplasma pneumonia
chlamydia pneumonia (this is not the STD chlamydia. Different one.)
legionella
pertussis (whooping cough)

However, streptococcus pneumonia can also be a walking pneumonia OR a lobar pneumonia. In a lobar pneumonia the person usually is short of breath, running a fever of 102-104, and they point to where it is: hurts in the right upper chest. On chest x-ray there will be consolidation: whited out from fluid or swelling instead of nice ribs and dark air. They are often tachycardic and hypoxic.

In walking pneumonia the person often has no or minimal fever, they just feel tired or short of breath when they do things, and the chest xray can be “clear”. It isn’t really “normal”, it’s just that the bacteria or virus affects the entire lungs and causes some swelling throughout and doesn’t white it out.

“Double” pneumonia is when the chest film is whiting out on both sides. We also see the lungs whiting out with ARDS — acute respiratory distress syndrome. So after trauma in a car wreck and lots of broken ribs, the lungs can be bruised too and white out. Ow. Influenza virus can cause lung swelling and in the 1917-1918 flu infected military recruits lungs were swelling shut. They would turn blue and die.

“My” strep that I’ve had pneumonia with twice is streptococcus A, not strep pneumonia. It causes strep throat mostly though it can invade and cause sepsis or pneumonia or cellulitis. There are currently 4000+ known strains of strep A, and some are resistant to antibiotics or can cause kidney damage or do all sorts of nasty things. I think that “my” strep is resistant to azithromycin.

The current guidelines say to treat walking pneumonia with azithromycin. However, a paper came out this year saying that resistance to azithromycin is rising among streptococcus pneumonia and that nearly 50% of strains tested were resistant. Uh-oh. That means that azithomycin doesn’t work and the person can get sicker and may die. I talked to a pulmonologist in Seattle when I needed help with someone. He said that he would have said there weren’t any resistant strep pneumo strains here in Washington except that he had one intubated and in the ICU right then. “I’m convinced now, ” he said.

A lobar pneumonia is easier to diagnose. Abnormal chest x-ray, reasonably healthy people run a high white blood cell count (so my frail folks, immunosupressed folks and 90 year olds don’t raise their white blood cell count), and a fever (ditto) and look sick. The walking pneumonia people come in saying they have been coughing for 3 weeks or 4 weeks or two months. I am doing more lab testing because of the resistance.

This winter I have seen 6 different causes of walking pneumonia here: influenza A, respiratory syncytial virus (In more than one person over 60. That is NOT who the books say it should affect. It’s supposed to mostly cause bronchiolitis in babies and preemies), pertussis, strep pneumococcus, strep A and none of the above. All looking pretty much the same, but with different treatment.

https://wwwnc.cdc.gov/eid/article/15/8/08-1187_article
https://www.cdc.gov/pneumonia/atypical/mycoplasma/index.html
http://www.medscape.com/viewarticle/820736
https://www.cdc.gov/drugresistance/threat-report-2013/pdf/ar-threats-2013-508.pdf#page=79
RSV: http://kidshealth.org/en/parents/rsv.html
Mycoplasma resistance to azithromycin has been reported too: http://erj.ersjournals.com/content/36/4/969

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.

from blue to breathe

I attended a medical conference on line yesterday and today and it made me very blue. At first it just frustrated me, because it is about increasing behavioral health access. Isn’t that a good thing? Yes, but they completely missed the biggest barrier for primary care: TIME.

With the current US medical corporate money extracting insurance non-caring system, primary care is increasingly forced into 20 or 15 or 10 minute visits. I fought my hospital district when they said “See patients for one thing only.” I replied “That is unethical and dangerous: if it is a diabetic with an infected toe, I HAVE to check their kidney function, because antibiotic dose must be adjusted if their kidney function is reduced.” And there are at least two and maybe three problems there: infection, and if the diabetes is out of control that worsens the infection, and then kidney function. And actually I have to be sure anyone going on antibiotics has good kidney function or adjust my dose. I am very very good at this, but it takes time. I can work with complex patients, with veterans, with opiate overuse, with depression: but none of this is a simple template slam dunk. A study more than a decade ago says that the “average” primary care patient had 5 chronic illnesses. My patients don’t want to come in for each one separately and anyhow, if they have kidney problems I have to pay attention when I pick medicines for their high blood pressure. None of it can be separated out. That is why medicine is complicated.

Someone asked why can’t I just post the price of a “simple” visit for a sore throat. But a sore throat can be viral, can be strep A, can be a paralyzed vocal cord, can be a throat abscess, can be vocal cord cancer. I can’t tell ahead of time. I can’t. Early on during covid, a patient called and wanted a Zoom visit for abdominal pain that he said was constipation. I said “No, I can’t do abdominal pain over Zoom safely.” I can’t ASSUME it is constipation. It was appendicitis and he had his appendix out that evening. He called from his hospital bed the next day to thank me for making him come in.

The conference made me blue because they ignored my questions about why they were not advocating for primary care to have more time with patients. They claim to be all about change, but changing the US medical system? Nope. Do not want to talk about that. But I do want to talk about it. You can help by letting Congress know: single payer or medicare for all. That insurance company gets 20 cents of every dollar to profit and wastes tons of money forcing doctors’ offices to call for prior authorization. And if we have single payer, think of all the small businesses that will start because the terror about health insurance will disappear! I think it would reduce everyone’s stress, except the insurance CEOs. And they have earned more than enough, goodbye greed.

I am also tired of specialists telling me that primary care needs to do MORE. When I get told that I am not doing enough about hypertension, bladder leakage, depression and stopping smoking, and then 20 other specialists lecture me. Ok, so one minute per topic to fulfill what all of them think I should do? I want a primary care conference where primary care doctors are celebrated: cases are presented where the specialist says what a brilliant job the primary care doctor did.

I received a consult letter from a cancer doctor a few years ago. He wrote that I had diagnosed the earliest case of chronic leukemia that he had ever seen and that he was impressed and the patient would do fine. That’s the conference that I want to go to: where primary care and specialists talk about that and we inspire more doctors to do primary care.

You can learn more and how to talk to your congressperson here: HealthCare Now: https://www.healthcare-now.org/

or at Physicians for a National Healthcare Program: https://pnhp.org

And put your vote and your money towards healthcare, not health insurance.

speaking up

A friend says he does whatever he wants. He refuses to answer questions about how he makes his money. He doesn’t care if this annoys people. I suspect he may enjoy it.

I have one of those public jobs. Well, had. I have now been disabled from Family Medicine for a year. My lungs are much better than a year ago but they are not normal. And I have now seen 17 specialists and 3 primary care doctors since 2012. The consensus is “We don’t know.” Though many specialists are not willing to say that. What they say instead is, MY testing is NORMAL, go to someone else. My lungs are not normal, but I am on my fourth pulmonologist. I saw a cardiologist this year and the first thing he says is, “It’s your lungs, not your heart.” Well, yeah, I know that.

I miss my patients, but there is something freeing about not working. Ok, more money would be nice, but I am doing ok. Meanwhile, I am thinking about what to do now. I can write full time. Write, make music, travel (on a budget) and sing. And speak up.

Doctors have interesting portrayals on television. We went from Dr. Kildare to Dr. House, working our way through the shows with an emergency room and medical residents. ER drove me nuts. No one EVER dictated a chart so at the end of each show I hyperventilated at the hours of paperwork/computer/dictating they had left. House interests me because it’s always the thing that the patient is hiding or lying about that is the key. “Go search his apartment.” says House. I have figured out cases by getting permission to call family or a group home. More than once.

But a physician is a public figure. I had been here for less than a year when a woman comes up to me in the grocery store and says “What are my lab results?” I look at her blankly. I can’t remember if I really did the snappy comeback that comes to mind: “Take off your clothes and I will see if I remember.” I respond politely and she says, “Oh. I should call the office, right?” “Yes, I try to leave the work there,” I say. If a particularly difficult person was bearing down on me, I would whisper “cry” to my kids. That worked. They would act out on cue and I would be the harassed mother. The person would back off.

I am in a small town. We have three grocery stores. I see patients everywhere, now that it has been 22 years. If I remember every detail, that means they are or were really sick. And we have the layers of relationships: someone might have kids the same age or work with boats or be in chorus with me. Once I take my daughter to a party. The mom introduces me to two other mothers. “She’s my doctor,” says the introducing mom. “Well, me too.” says the second. “And me,” says the third. We all laugh.

Once I am visiting my brother outlaw’s bicycle shop. He has a customer. The customer starts talking to me too. Brother outlaw says, “Do you two know each other?” The customer eyes me. I have my neutral doc face on. “She’s seen me NAKED!” says the customer and I howl with laughter. What a great reply. And my brother outlaw gets it.

Docs have to pay attention to HIPAA. When three women say that I am their doctor, I reply, “Yeah and I left my brain at work, so I can’t remember a thing.” Those three were healthy, so I really do not remember labs or the results of a pap smear. Once I was in cut off shorts and waved at an older woman who was at the ophthalmologist’s. She sniffs and looks away. I get the giggles: I think she did not recognize me. My town is only 10,000 people, so after 22 years I have taken care of many of them. Though sometimes people thank me for taking care of their mother, and after it sounds unfamiliar I ask if they mean Dr. Parkman? Oh. Yes. People get me mixed up with two other small Caucasian woman doctors.

I started the “outfits inappropriate for work” category last year when I was still very sick and short of breath and on oxygen. I did not go out much, partly to avoid covid. My pneumonia was something other than covid and it was my fourth pneumonia and I should not need oxygen. Now I’ve had mild covid and the oxygen is only part time. I sang at my son’s wedding, off oxygen, so I can sing off oxygen for a short time. I danced off oxygen too and did get QUITE short of breath. Since I am no longer a public figure, I can speak out and speak up more. I am thinking about that, particularly with the recent Supreme Court news. I do not agree with what they seem to be planning.

Covid-19: Approach to Long Haul

Covid-19: Approach to Long Haul

This is written primarily for physicians, but is for anyone to read. This is a working theory.

I am very interested in Long Haul because I was diagnosed with PANS by an older psychiatrist who worked exclusively with physicians in 2012. That was during my third flare. The evidence is mounting that Long Haul is an autoimmune disorder like PANS. I am sharing my approach to Long Haul based on both my clinic and personal experience.

Step 1. Validate the patient. Patients are terrified, understandably, to have something “like” chronic fatigue, fibromyalgia, or are worrying that they are “crazy”. Evidence is appearing that Long Haul, chronic fatigue and fibromyalgia are all complex autoimmune disorders with multiple antibodies. We do not yet have vast antibody tests. So the first step is to say that we believe patients and also that we can help. This is a very new and evolving field. I tell patients that it will change fast over the next few years. What I tell them today may change within a year as we get new information. If this makes them anxious, remind them of the Women’s Health Initiative and how that changed hormone therapy, and that cancer treatments keep improving.

Step 2. Lower stress and antibody levels. When we are high stress, cortisol and adrenaline go up and impair the immune system. The immune system is fired up and looking for something to do. Bacteria like strep A have evolved with us and have surface proteins that “look like us”. Our bodies make antibodies to the Strep A or Covid-19 and sometimes those antibodies attack us too, because our own proteins look the same. One way of lowering the antibody level is sweating. Hot bath or shower, sauna, hot tub, exercise. Support these and explain. A second way to lower the antibody level is to quiet the sympathetic nervous system and activate the parasympathetic nervous system. The parasympathetic is the quiet, relaxed and laughing one. Where does the patient feel safe, relaxed, quiet? After my father died, leaving a complicated and messy estate with an out of date will, I did a Sudoku daily for a year. I realized that the Sudoku relaxed me because I could not solve the estate quickly, but I could nearly always solve the Sudoku. Stupid cat videos, rocking chairs, knitting, gentle walk in the neighborhood if it feels safe, a walk in a mall (without one’s purse if overspending is an issue) — how does this particular person relax? Teach the slow breathing: in for a slow count of five and out for a slow count of five. Or square breathing: in for five, hold five, out five, in five. Twenty minutes of slow breathing supposedly moves almost everyone from sympathetic to parasympathetic. It may take practice and feel unfamiliar: I have had a veteran say that it felt very very weird to relax and he was not used to it. He kept at it.

Step 3. Symptom picture. At present I am basing this on my own experience with PANS. This is my working theory. Antibodies can block receptors or “turn the key” and activate receptors. Buprenorphine does BOTH (though it is not an antibody): at lower levels it turns the key and at higher levels it blocks. I would ask specifically about five fields. You many well be able to come up with more.

a. Brain function. In my PANS, I have antibodies to dopamine that turn dopamine on very high. Other physicians assume that I am manic. I am not quite manic, but it certainly feels awful. I feel like I have been shot out of a cannon when I wake up, with the morning cortisol rise. For me, the caffeine in coffee calms me, and my assumption is that it displaces the anti-dopamine antibodies. Tea does not work. I quit coffee for seven years until the latest flare. Albuterol doesn’t work. Terbutaline does work. I don’t know about theophylline or adderall, I have not tried them. If someone has “brain fog”, I assume that they have blocker antibodies OR be sure to ask if they were different in the first 4-6 months of the illness. For me, the antibodies rise for about 2-3 months and then take 2-3 months to drop. I have a lot of fatigue when they finally leave and this time I could tell the day that the last antibodies “fell off” or dropped to my “normal” level.
For blocked people, does caffeine help? How about albuterol? Adderall, theophylline, SSRIs. Every person will have different antibodies. Treatment needs to be tailored.

b. Muscle function. My anti-tubulin antibody (I have PANS, remember?) shuts down my “fast twitch” but not my “slow twitch” muscles. Tubulin is what makes the lung cilia function, so presumably mine are paralyzed during a flare and that is why I get pneumonia. I am tachycardic, resting heart rate 100 and walking slowly or talking heart rate 135, so I get very short of breath. Both the lung dysfunction and antibodies that upregulate my dopamine receptors make me tachycardic. I think that the people who can barely get out of bed with chronic fatigue have both fast and slow twitch muscles blocked. They need validation and lower stress. With support, perhaps the antibody level can be lowered enough that they can function again. I also found that my muscles hurt when my blood sugar was up and that if I keep it low, I have minimal muscle pain. I do not know if this is true for other people.

c. Gut function. In PANS, there appears to be an antibody to lysoganglioside. I don’t understand it but when I am sick, I cut carbohydrates way back or I am horribly ill. I tolerate lactose but not fructose, sucrose or gluten. One year after getting my last flare, I can eat everything except gluten. With this round I figured out that rising blood sugar when I am sick makes me acidic. This in turn worsens lung function more, as my body automatically slows my breathing to balance the acidity. I found that taking bicarb before a meal helped tremendously. In the worst/highest antibody part of the flare, I eat fats, because anything else makes me ill. SO: what can the patient eat or not eat and support them. Food intolerances are on the rise. Ask if there are foods that they cannot eat and support them not eating them. They can go to a very restricted diet that works for them and wait three weeks. After three weeks, food antibody levels are supposed to drop. They can start adding foods back in, one every three days. I do not know if this will work in a bad flare, the antibodies may be too high.

d. Lungs: do a resting heart rate and oxygen saturation. Do a walking heart rate and sat. Then do a LOADED heart rate and sat, with the person carrying the equivalent of two bags of groceries or their toddler. If they are young, they may hold their sats, but if their heart rate jumps to 135, that is like running a continuous marathon. Try oxygen and see if the heart rate comes down. Sleep apnea testing is also highly recommended. If they are tachycardic with daily activities, of course they have fatigue! Rest. Patients can learn to check a pulse or have a pulse ox, but fingers and second hand are cheap.

d. Other. I am reading that the main complaints in Long Haul are fatigue, brain issues, tachycardia and shortness of breath. What else really bothers the person? Sound sensitivity, loss of the sense of smell. The first step in helping with this is to listen and validate.