Category Archives: health care costs

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adaptive theory of PANS/PANDAS

This is my working theory on PANS/PANDAS. Pediatric autoimmune neuropsychiatric syndrome/Pediatric autoimmune neuropsychiatric disorders associated with Strep A.

Four or more antibodies. The antibodies can take different patterns in different people.

  1. Antibodies to dopamine 1 and dopamine 2 receptors.

The antibodies are like keys fitting in a lock. The key may fit in the lock and BLOCK or fit in the lock and OPEN IT. So, there are a very large number of patterns that could arise from this, especially when we remember the rat neuron with 300 different receptors for serotonin in one neuron. Think of the possibilities here.

If this antibody BLOCKS, an ANTAGONIST, it will cause slowing/brain fog/depression/and I don’t know what all.

If this antibody is an AGONIST and the key turns, it apparently can cause mania, ADHD, OCD, oppositional defiance, clinginess, separation anxiety, anxiety, etc.

We do not know what causes psychiatric disorders. Now we have a category called neuropsychiatric, where it is caused by an antibody. Or antibodies. What percentage of psychiatric disorders are caused by this? I am betting high rather than low.

  1. Antibodies to tubulin.

If the antibody is an ANTAGONIST, blocking, then slow or fast twitch muscles won’t function correctly. It could block both. I think if it blocks both, that is the severe lie in bed chronic fatigue. I have trouble with my fast twitch muscles but my slow twitch ones work just fine.

If the antibody is an AGONIST, you get some super athletes. I know a number of people that I would suspect fall into this category. I can name five off the top of my head, friends.

  1. Antibodies to lysoganglioside.

This one worries me. Lysogangliosides lyse ganglions. These antibodies are used in soap making, among other things. They break down fatty cell walls.

When I have a high antibody level, I have trouble eating any carbohydrates. As I improve, I have trouble mostly with sucrose, fructose and gluten but not lactose. Also, when I eat gluten, I get acidic. When you get acidic, your body tries to compensate by slowing your breathing to hold on to CO2, because you need to balance the acid H+ with a base, OH-. So: triple whammy. Acidic I automatically breathe slower, which is not helpful when I am already hypoxic and tachycardic.

I have not figured out whether my antibody is an agonist or antagonist.

An agonist would lyse more ganglions. This could be bad for the brain and for peripheral nerves. Neuropathy and dementia.

An antagonist would stop ganglion lysing. Um, in theory, cancer. Lysogangliosides are supposed to clear out bad cells.My guess is that I have an antagonist because of the family history. At least, on my mother’s and sister’s side. My father smoked two packs of Camels for 55 years and did not get cancer: tough bugger, right? Or did he have an Agonist? This line of thinking makes me very highly motivated to eat in whatever way the antibodies want me to. I do not understand why gluten would trigger this and why the gluten effect in me lasts longer than the fructose and sucrose effect. Gluten intolerance and other gut problems are on the rise and this would certainly explain that. This is the cause of at least some fibromyalgia patterns. Not only does eating gluten screw up my breathing, but it makes any muscle that I have used recently hurt like hell. I ate some meatballs without reading the stupid package back in April. Two hours of chest wall muscle pain and honestly, heart pain. I dug the package out and duh: bread crumbs. Gol dang it, I hate it when I am stupid. However, it hurts like hell but at it’s worst I had normal cardiac enzymes and no heart attack. Weird.

Ok, but WAIT, you said ADAPTIVE. How can this nightmare be adaptive?

Sure, adaptive. Remember the back up system for when we are starving? We switch from metabolizing glucose to metabolizing protein and fats, our own if necessary. We go from glycogen metabolism to protein/fat metabolism which produces ketones.

This is the crisis shit hits the fan emotionally and in plagues system.

So, can be caused by stress or infection or a combination.

Why why why?

Because if the stress gets too high or the infection gets too bad, our body switches gears and runs a back up system. I’ve thought of chronic fatigue as some sort of switch the body throws for years, because it’s the hypercrazy work too hard workaholic Type A people who get it. Type B people do not get it or don’t notice or don’t care. Type B people just say, wow, I’m tired, I think I will rest. The Type A people flip out and say “Put me back like I was!!!!” and then they go to 47 doctors and refuse to do anything the doctors say and do internet research and see any kind of quack you can imagine and they are the most exhausting patients.

Why the psychiatric stuff? Ok, take mania. If there is plague or you are in a really dangerous abusive situation, mania suddenly makes sense. Overnight you are different and what’s more, it scares the hell out of everyone. You are shunned. You are alone. You may get thrown out of a job, family, friend group or all of the above. This would tend to protect you against both plague and the really dangerous abusive situation. Whether you like it or not.

And how clever of the brain/body. Here is a back up system. It changes at least four systems, so you are now a different person. You freak your employer, friends and family out. AND you are sick as shit and they won’t listen. You have to get out and go elsewhere for help or hide in your castle or house or whatever. You can’t move or you have super muscles. And every single person has a different pattern.

I look at the long haul covid. The most common symptoms are psychiatric, shortness of breath and fatigue. Sound familiar?

Now, will someone PLEASE fund my NIH west?

_________________________________________________________

Guidelines for treating PANS/PANDAS: https://www.pandasppn.org/jcap2017/

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Email quack spam: try CBD oil for free!

Lovely email QUACK spam. TRY CBD OIL FOR FREE!

“The Miracle Molecule! Everything You Need To Know About the Health Benefits of CBD Oil“. The link implies that the article was in Reuters. I ain’t pressing no spam link. Internet search on Reuters Everything You Need to Know About the Health Benefits of CBD Oil does not bring up a Reuters article.

“All natural formula. All CBD products use proven, organic all natural ingredients that are toxin-free.”

Ok, now WAIT a minute. Proven? By what the hell method? We dropped some and got high so it’s good? And don’t get me started on toxin-free. Sure, and they’ll sell you a bridge too.

Let’s discuss all natural.

Is CBD oil “all natural”? Um. Well, it could be organically grown, I will give them that. There have been pesticide poisonings from illegal pot and the laws for growers vary state by state. Check your state laws re whether they have specified what the growers can use on the marijuana plants. Paraquat is very strongly implicated in Parkinson’s (https://pubmed.ncbi.nlm.nih.gov/20094060/) and you don’t want that, do you?

How do you define “all natural”? Innocent virgin farmer girls and boys, skipping through the pot plans and milking the oil out gently? Oh, ye innocent and foolish peoples. Here is a nice article about fires in CBD processing plants: https://www.sandiego.gov/sites/default/files/dsdfire-38-1.pdf. They burn real good, it turns out.

The National Fire Protection Agency (NFPA) has guidelines: https://www.firefighternation.com/prevention/nfpa-approves-420-standard-on-fire-protection-of-cannabis-growing-and-processing-facilities/. You do keep up with the NFPA, don’t you?

An older article illustrating the problem: https://www.politico.com/story/2019/02/18/marijuana-factories-explosions-safety-issues-1155850.

And the title of this seems pretty self explanatory: https://extraxx.com/the-top-five-safety-concerns-in-a-cannabis-extraction-facility/. “Let’s begin with the obvious. When dealing with flammable gasses or liquids in extract production, there is a risk of fire or explosion during the handling process. The easiest way to understand the risk of fire or explosion is to consider the fire triangle. Essentially, a fire needs three things to start: a fuel source, oxygen, and an ignition source. The basic philosophy here is that by removing legs from the fire triangle, we can make the process safer; by removing two legs, an operator can make their extraction process significantly less incident-prone.” Later in the article: “there are two tools that should be kept on site to make known the presence of unnoticed flammable vapors: a permanent LEL, or Lower Explosive Limit, monitor should be installed in the extraction room; and a handheld two or four gas portable monitor should be on site as well.”

I don’t have much experience with LFL monitors. Now I want to buy some of the gummies and try lighting them on fire. Does the smoke make one high? Well, I think it depends what it is suspended in. I thought vaping was insane when I read that some of the nicotine vapes suspended the product in antifreeze. Um, your dog may die if they drink it. Absorption in the lungs just does not seem wise. Also, some of the vapes get so hot that heavy metals get in the lungs. You know, lead and stuff. When I researched it last, China was turning out 500 different kinds of vape machines. Uh, ick, don’t do that. Sugar burns so the gummies might. I have some “Annie’s organic fruit gummies” so I can check whether they burn. Though they shouldn’t contain CBD oil. Now you know what I am doing while disabled. Home chemistry and on line research.

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Cognitive behavioral therapy

Dr. Aaron Beck, father of cognitive behavioral therapy, died this week, November 2021, at age 100.

Oddly enough, the best explanations of cognitive behavioral therapy that I’ve read is on a writing website. It talks about writing down all of the horrible thoughts and then going back and writing counter thoughts. Psychologists have been talking at me at medical conferences for years about cognitive behavioral therapy, but they never explained it. They said we could do it in clinic. I thought cynically that maybe I could if I knew what the hell it was.

And the explanation by the author is oddly similar to what I think of as the angel and devil on my shoulders. It turns out that I do do it in clinic.

When I react to some event, I let the devil out first. It has a fit about whatever is happening, writes poems, is reactive, paranoid and full of anger and grief. It often imagines over the top terrible things happening to the person or people that did whatever it is. Then the angel wakes up and says, wait. What are you saying? What you are imagining and cursing that person with is WAY worse then what they did. The angel writes the poems of forgiveness.

So I have been doing a homemade form of cognitive behavioral therapy.

However, I would say that it can be overused. We need to listen to patients carefully. If they are in an abusive relationship, it should not be papered over with cognitive behavioral therapy. A friend and I have been comparing terrible childhoods. His involved being beaten without reason.

I said recently that what people hit with in my family is words. They make grief and fear into stories, funny stories, that make people laugh. Shame and humiliation and reliving the feelings. I said that I am reactive and pay close attention to words. But I have reason, back to age 2. I said that books are my refuge because the words are not about me, they don’t shame me, they do not humiliate me, and if I read a book twice, it has the same words. Home, love and safe.

In my maternal family, if I said that I was not comfortable with a comment, I was told that I took things too seriously, that I have no sense of humor, that I can’t take a joke. Gaslight and then dismiss any objection. That is how one side of my family loves. I do not like it. Unsurprisingly, they do not love me, or at least I do not feel loved.

And my friend said, your family, your childhood, was worse than mine.

One of my talents in clinic is that I can listen to insane family stories. I can listen because my family is insane. They are cruel. At least, it feels like cruelty and horror to me. I didn’t ever try to find out if a family story is true. I listen and then say, yes. I think it is appropriate for you to feel angry/sad/horrified/appalled/scared/hurt/whatever.

Somehow that listening and validation is huge. I have people come in and say, “I NEED AN ANTIDEPRESSANT.” They want to supress the feelings. So I had time in my clinic: why do you need an antidepressant? Tell me the story. Fill me in. What are you feeling and why?

And more than half the time after the story, after validation, I ask, “Do you need an antidepressant?”

The person thinks. “No. I don’t think so. Let me think about it. I feel better.”

“Ok. Do you want to schedule a follow up?”

Half do. Half say: “No, let me wait and see. I will if I need it.”

Mostly they don’t need it. They have emptied out the awful feelings in the exam room and they aren’t so awful after all. I say that it sounds like a pretty normal response and I would feel that way too. Because I would. Once the feelings, the monstrous feelings, are in the light of day, they relax and evaporate, dissipate like mist, fly home to the Beloved. Goodbye, dark feelings. You are appropriate and you are loved.

Blessings, Dr. Beck, and thank you.

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released like stars

I have had strep A sepsis and pneumonia twice. It was terrifying and I ended up having to take care of myself. I would be dead if I was not a physician.

Not to be named obscure website helped to sustain me, because it was a place I could go while I was alone, terrified and very very ill. The bout in 2014 took me out of clinic for six months and then I was barely able to work seeing half my usual number of patients. My local hospital refused to help me, but other people did. I am deeply deeply grateful to the people who did help me, including people on everything2.com that I have never met.

I wrote this in June 2014.

released like stars

________________

My sister used to tell me

β€œEverything2 is like a brain.

That’s what attracted me.

All the nodes, like neurons

Connected to each other more and more.”

Or something like that.


Isn’t it annoying?

Now that I’ve taken that memory out

Dusted it off

Embellished it

Who knows what she really said


Flashes of light now

And some where I blank out entirely

For just a moment

Only when I’ve eaten

I’m still avoiding carbs


Could be absence seizures

But she said seizures hurt

These do not hurt

And are accompanied by muscle twitches

Or muscles rolling gently across my frame


I am scared at first

Because I think they are neurons

Bursting into brain flame

And burning out

Brief candles


But I don’t think that’s right either

I think it is plaques

Deposits of antibody

Small pushpins in the wrong place

Being released like stars

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What I learned from my first doctor job

When I started my first job, I had a nurse and a receptionist within a bigger clinic, all primary care. Fresh out of residency. One month in I asked to meet with my nurse and the receptionist.

The receptionist brought the office manager. I was surprised, but ok.

I started the meeting. “I am having trouble keeping up with 18-20 patients with fat charts that I have never seen before, but I think I am getting a little better at it. What sort of complaints are you hearing and how can we make it smoother?”

The office manager and the receptionist exchanged a look. Then the office manager excused herself.

Weird, I thought.

The three of us talked about the patients and the flow and me trying to keep up. About one third were Spanish speaking only and I needed my nurse to translate. That tended to gum things up a bit, because she could not be rooming another patient or giving a child vaccinations.

I thanked them both and the meeting broke up.

Later I found that the office manager had been brought in because another doctor tended to manage by yelling and throwing things. And another doctor had tantrums. So the receptionist was afraid of me and had asked the office manager to stay. The moment they realized that it was collaborative and I was asking for feedback and help, the receptionist was fine without the office manager.

That was an interesting lesson on working with people. I had been very collaborative with the nurses and unit secretaries in residency. As a chief resident, I told my Family Practice residents to treat the nurses and unit secretaries and in fact everyone, like gold. “They know more than you do and if you take care of them, they will save your ass!” The unit secretaries would go out of their way to call me in residency. “Mr. Smith is not getting that ultrasound today.”

“Shit. Why not? What the hell?” I would go roaring off to radiology to see what the hold up was.

The unit secretaries did not help the arrogant residents who treated them like dirt.

I thought it takes a team. I can’t do my work without the nurse, the pharmacist, the unit secretary, the laundry, the cafeteria workers, the administration. It takes the whole team. I value all of them.

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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.

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Covid-19: working in healthcare

So, should healthcare workers be required to have Covid-19 vaccines?

Yes.

What is the precedent?

Take tuberculosis, for example. Airborne, very contagious. I was born in a Knoxville, Tennessee tuberculosis sanatorium, because my mother coughed blood a month before she was due and got quarantined for active tuberculosis. Yes, the state could quarantine my mother. I was removed immediately at birth because tuberculosis doesn’t cross the placenta. The antibodies do, but the infection doesn’t. However, newborns usually catch it and die very quickly. I was lucky. My father and grandparents took care of me for 5 months. Then my mother was allowed out (after 6 months total) but was not strong enough to take care of me. So I was taken to my maternal grandparents for the next four months, and did not touch my mother until I was 9 months old.

My mother was taking 36 pills a day at home, because you have to use multiple drugs to kill tuberculosis. It develops drug resistance very very quickly.

Well, so what, you say?

Healthcare workers in the United States are routinely checked with a ppd for tuberculosis. If it is positive, you cannot work until further testing. If you have latent tuberculosis, you are treated. If you have active tuberculosis, the treatment is longer and more complicated, here: https://www.cdc.gov/tb/topic/infectioncontrol/default.htm

My cousin then said, “Well, you don’t have to show the tuberculosis test to go in a restaurant!”

Well, not right NOW, because currently tuberculosis is under more or less reasonable control in the US. Remember that guy who came in to the US with active multi drug resistant tuberculosis and knowingly exposed everyone on that airplane? Great. I remember reading about that and thinking what a selfish jerk he was. And then the group of unimmunized people who went to India and all got measles. The US at that time did not bar anyone from returning, but asked them to finish a 3 week quarentine before returning to the US. One person did not do that. There was a measles outbreak in the midwest which cost the CDC (and therefore you and me because those is tax dollars) millions to trace, quarantine and clean up. So there was discussion at that time about whether the policy should be changed and we should not allow US citizens with known infectious diseases to come in on airplanes. We DON’T allow immigrants in with infectious diseases: they are tested for tuberculosis if coming from countries where it is endemic.

So, if we had a huge outbreak of tuberculosis, we WOULD have quarantines and shut downs.

I have tested a patient for tuberculosis, about two years ago. Her son had been diagnosed with active tuberculosis. We tested her with a blood test and then repeated it in three months. Negative, hooray. In residency I also saw a case of miliary tuberculosis. That is where the tuberculosis is growing so well in the lungs that it looks like little grains of rice in the lungs on imaging. Not a good thing.

My cousin: “You shouldn’t have to put something in your body to work.”

If you have tuberculosis, you do not get to work in healthcare, because you can kill your patients. I think that this is a good thing, to not kill our patients.

I am submitting this to the Ragtag Daily Prompt: starspangled. Keep America Healthy, how about that?

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Covid-19: in flew Enza

Survey shows 6 in 10 Americans will delay or skip flu shots this year.

Oh, dear. Not going to get your influenza shot? I am. Well, you say, YOU are on oxygen and have tricky lungs and keep yammering about imaginary Pandas.

Yes, and you should get your vaccine anyhow, even if you are healthy as a hoss.

If not for yourself, for everyone else. Because usually influenza kills 12,000 to 61,000 US citizens a year and gosh, guess what it will do to post-Covid long haulers. Um, kill, I would expect. And with a very low influenza winter last winter, because covid and masks and social distancing, immunity is down and the infectious disease folks are anticipating that it could be a worse than usual influenza year. How many people have long covid? This just in: More than half of covid survivors experience post acute sequelae to covid 19 (PASC) at 6 months after. “β€œThe most common PASC involved functional mobility impairments, pulmonary abnormalities, and mental health disorders,” wrote Destin Groff, Penn State College of Medicine and Milton S Hershey Medical Center, Hershey, Pennsylvania, and colleagues. ”These long-term PASC effects occur on a scale that could overwhelm existing health care capacity, particularly in low- and middle-income countries.”

AND not only that, even if you or your friend or mother or grandmother don’t die of influenza, far more people clog up emergency rooms and doctor’s offices. The “CDC estimates that influenza has resulted in between 9 million – 45 million illnesses, between 140,000 – 810,000 hospitalizations and between 12,000 – 61,000 deaths annually since 2010.”* And the doctors and nurses and emergency people and nursing home employees and first responders are already short staffed and tired. So if you won’t get your flu vaccine for the general public, get it for the first responders.

AND before you tell me that “the vaccine gave me flu”, hello, it takes up to two weeks for the flu vaccine to confer immunity, and so if you got influenza two days later, you didn’t get it from the vaccine, you got it because you got the vaccine too late. Vaccine complications, well, I have seen one complication in my 30 years of Family Medicine, and it was someone I knew, not a patient. And half the people who tell me that “the vaccine gave me flu”, stomach flu with diarrhea and barfing is not influenza. It’s more likely to be a hangover than anything else. I see a lot more post alcohol “stomach flus” than true food poisoning. Quit drinking so much alcohol, ok?

And while you are at it, you’d better get the Covid-19 vaccine while it is still available free. And before you get on an airplane for Thanksgiving or go Trick or Treating with all those little germ spreaders or fly off to see family at Christmas/Kwanza/Winter break/whatever. Two weeks before, at least. Like, NOW. Or don’t, whatever, just don’t whine to ME about more deaths.

This public service message has been brought to you by a beneficent alien lizard. Feel free to send money.

*https://www.cdc.gov/flu/about/burden/index.html

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Graced

Poem: Graced

I touched base with the psychologist

not one I know

just one who was around

asked if I could talk
for 15 minutes

indeed, he said
a difficult situation

you know that the person won’t change

echo
won’t change won’t change

I believed this
for two days

then I remembered
why I am a doctor
my secret weapon
my healing talent

I always have faith in change

everyone
has choices

“I can’t stop smoking.”
says the man

“My father quit three years ago.
55 years of two packs a day,
unfiltered Camels.”

“Camels!” says the man
“Those are bad!”

“You can quit too.
It might take more than one try.”

Why would I go to work
to talk about hypertension
exercise, birth control
obesity, heart attacks

unless at my core

I believe each person has choices?

Sometimes the choices
are between miserable
and horrible

life and death

still
whether a person is 9 or 90

they are graced
by choice

The photograph is from May 2012, at the memorial for my sister. My father is on the left, sitting, wearing oxygen.